The Odyssey: Parenting. Caregiving. Disability.

When the clock strikes midnight as we ring in a new year, our problems don't magically resolve. Everything from the previous year carries over and more piles on as we get back up and running. But there's nothing wrong with setting our cynism aside to embrace a new year as a sort of clean slate. January is the perfect time to look at life from a different lens and maybe adopt a fresh perspective.  And perhaps that perspective is inside us, and 2026 is the year we start listening to ourselves and trusting our insticts.    The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.        TRANSCRIPT:  01;00;13;29 - 01;00;15;20 Welcome to the Odyssey.   Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host.   The Odyssey podcast explores   how our lives change. When a loved one has a disability.   I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010.   This podcast explores the triumphs and hardships we face.   We celebrate the joys of the odyssey of parenting, caregiving, and disability bring.   But we don't shy away from the tough stuff.   Since I'm all about keeping it real, I'm going to jump right in and say 2025 was probably the hardest year of my life to date.   And it's not like the clock strikes midnight on New Year's and poof, that all goes away.   Y'all, BLEEP is still hard as BLEEP. And that's not going to change any time soon.   But the one thing that I love about the New year is it can offer a fresh perspective if you allow it too.   And that's where I'll begin.   So about that fresh perspective.   I am a perfectionist. And it makes it really hard to be the creator, host, producer, editor, all the things of a podcast it's a lot of work. And, in addition to my work at the Center for Family Involvement; in 2025, I was lucky enough to join on, at ACT for Youth at Cornell University, working there as part of the communications unit.   And I absolutely love it. And it allows me to also work with families and professionals who are dealing with special health care needs and disabilities. It is a deep, deep passion of mine. I am a journalist by trade and so production volume, production value is really important to me. And so it's very hard to do a podcast and not edit the living daylights out of it for any little errors or mistakes that I make, especially right now when I'm just kind of spit-balling.   But like I mentioned in the intro, I've had a really hard year and that came with technical difficulties and life difficulties and just difficulties, y'all. And so that fresh perspective that I'm trying to welcome into my life is just to not try to be so perfect in all aspects of it. And so maybe this podcast will be a little messier and maybe they'll be a little more.   I don't know. More pauses. See, even there I am, I have I'm having a hard time because I didn't get the grammar right. But there'll be more pauses, more ums, more whatever. When I start bringing interviews back on, when I have the bandwidth to edit them, maybe I won't edit them so much. I have a few in the can that I need to do, but   I'm used to working with a team, and I'm a one man band here, and when you're juggling all of these things in life, you just can't do it all. And you certainly can't do it all perfectly. And I recognize and talk openly about disability and neurodiversity, and my own neurodiversity is got this perfectionism trap. And man, does it really, really, really, really get in the way of getting stuff done.   I don't know, I just had a notification and   in previous iterations I would have started over and I'm not going to start over. So if that got through on the audio, so be it. If my dog barks on the audio, so be it. I'm going to roll with it.   And I got to tell you, you know, speaking about that neurodiversity piece, man, I don't know.   I want to be honest, like the ADHD thing where, some tasks are hard and having three kids with neurodiversity and differing support needs, seeing the the avoidance of non-preferred tasks, as we like to call them. I have the technical difficulties on this podcast and trying to figure those out like it's it's this thing where, I don't know, you work around the clock, but your brain cannot focus on what you need to get done.   And I, I like to I think of it as like a chainsaw, like where, you know, or to push them out or whatever, where you have to pull the, not the lever, but the string thingamabob. Right. And it's been a long time since I've done it. But like, if you can't pull it hard enough, if your arms not long enough.   I mean, talk about not being tall or not being a man or whatever. Everything designed for someone other than who you are, right? It's really hard to start up. That's my brain. When I'm trying to do technical things. It just. It just it just gets so bored with, with the minutia of, of some aspects of understanding things. I just want to know how to do it so I can do it.     I don't want to go through the process of trying to figure it out. You know, it's similar with   many, many, many things like reading a book that you don't want to read. You just it's like pulling teeth to try to get it started and think about it.   But I spend a lot of time thinking about other things. And, part of me really wishes I could have went live with the podcast on Wednesday. So that whole caregiving piece, and a whole hard talking about heart and the things in life that are hard. So not only does my oldest have multiple disabilities, you know, he has down syndrome, he has ADHD as hearing loss.   I talk about these things openly. And Arlo, that's his name. He would too. So I want to be clear that, like, I try not to overshare too many things about his life, and I get I get consent from him   And I think it's important to share things because I'm able to advocate for him in a way that a lot of people can't.   And what's interesting about Arlo and my life and my work is that it's all interwoven. So I was a journalist living overseas when he was born, and I didn't know he was going to have Down's syndrome, and I've literally had to advocate for him since before he was born. He stopped moving when I was 39 weeks pregnant, and had we not gone to the hospital because of that,   even though I say this, because or at the time I remember saying, oh, you know, just drink cold water. I remember drinking cold water. And, the night before we went into the hospital and I was at a party with my friend Tommy. Hey, Uncle TomI, if you're listening,   I miss you,   I know, we were all there and talking and and I later took a sip of really cold water, or might have even been Coca-Cola, and I, like I felt a kick, but I had felt his movement slowing and something inside me was like,   But everyone said, oh no, that slows at that time, you know, oh, it's okay. You know, babies get bigger and so their movements slow. That morning we went to the the next morning and went to the E.R. and had we not Arlo would not be here today. Right. So that advocacy started by saying, okay, it wasn't moving enough.   So I'm going to listen to my own concerns and not everybody else telling me. And sure enough, an emergency C-section totally traumatic. And out he came. And he is an ICU for two weeks and I swear this week I was we were at the doctor and his his pulse ox rate has oxygen levels dropped while he was getting this treatment, and it's like PTSD.   It took me right back to his little head in the box, you know, with oxygen and just watching the machines and looking at the beeping, wondering if I'd ever be able to bring him home. And I know for a lot of caregivers, two weeks isn't that long. But man, it feels like forever when you just want to hold your kiddo, right?   And that that advocacy has continued. So when he was like two, you know, he started, he would get pneumonia and he'd be really, really sick. And I was just sharing with my colleague this week about this, like, no one said, like, hey, he shouldn't be getting pneumonia this often. It was my advocacy when I took him to the pulmonologist and or anyone that doesn't know a pulmonologist is a doctor that, studies respiratory and lungs.   Right. Took him to the pulmonologist and I said, hey, we're doing, like, two antibiotics and steroids at a time here. I don't want to keep treating this. How do we start preventing this? And it wasn't until I said that that someone said, oh, well, we can test his IgG levels, meaning they can test his immune system to see what his body is responding to and where things are at.   I had to ask for it. I didn't even know what I was asking for. I just had to present my son in a different way and ask a question that for some reason nobody was thinking. And sure enough, we found out. I can't even remember at this point. But you know, somewhere between the ages of two and four that he has immune system deficiencies, which are quite common when you have down syndrome, because having an extra copy of the 21st chromosome messes with your immune system.   There's a direct correlation we know from mapping the human genome about that. Right. And so that advocacy led to him getting these IVIg treatments and, you know, similar advocacy led to him getting hearing aids. And, you know, similar advocacy led him to playing sports and doing this and doing that. But the medical component has always been this different sort of thing, because as I found out this week, it's.   Much more rare. To have a kiddo with special healthcare needs at the level of some of us than we even realize. And I'm sharing this because I just some I spend so much time   driving to and from appointments with not just our but, you know, my other kids. I have three kids   and, you know, the whole soccer mom thing, you're in the car a lot.   And so my brain is always working, but I don't have a lot to show for it. I, I have written entire books in my head on these drives. I kid you not like, I have this fantasy one day of writing more but that's why I'm going to try to talk to y'all. But this spitballing kind of attitude and I hope that these ramblings make sense, as I think it's important to share this perspective, is this realization I had.   As I was driving to and from these appointments with with Arlo this week, is that I don't have an advanced degree. I don't have,   anything to show for my knowledge, but I'm surrounded by people who are doctors or have law degrees or have PhDs or have masters. I'm surrounded by brilliance and highly educated folks, and I also am educated in the school of hard knocks.   And I say that in a way that like, I'm not woe is me. I feel this level of privilege, part of the reason I went into journalism is one I had undiagnosed ADHD, and I think somewhere in my body I knew that I had an interest in everything. And so I loved the idea of being able to, pick a story and really doing a deep dive and then, the next day it's another another story and another story and just really getting to learn about the human experience.   I find it absolutely fascinating. also my background in communications has allowed me to take my passion for disability rights and advocacy and helping families and sharing knowledge and sharing information and taking my experiences and my collaborations and sharing that to help empower other people.   I think it's so important because I remember early on starting out really holding like my son's, medical team and this really high regard. And then it just I had a light bulb moment, not only with the pulmonologist at that point, but also, you know, later on with, or maybe earlier on with audiology. And it's honestly time and time again where you see that doctors only know what doctors know and honestly, even the professionals with other high advanced degrees, they only know what they know.   And I had a conversation with Arlo's doctor this week that just kind of really sent that home, because he's an amazingly what's the word I'm looking for?   He's just an honest straight shooter. When I asked him, listen, doctor. And I didn't ask for his permission to share his name, but man, would I love to give him a shout out.   But I was like, listen, explain to me my kiddos condition like, you know, about this, but how do you know about this? And we consulted with this other doctor. And how do you know her? Because I saw a team at Boston Children's that really shed some light on, This new blood condition he has is called chronic immune thrombocytopenia. It's apparently incredibly rare.   Right. And so his doctor that we saw on Wednesday where he's getting his new treatment, I was like, well, listen, here's the deal. I see. I work in hematology and oncology and pediatrics, and that's a pretty small specialty right then in and of itself. And then when you take the immune component, right, the immune system component that impacts hematology and oncology, it's even smaller.   And then when you take down syndrome. And immune system and hematology and oncology. Well really there's only a few places in the country and in the world where you know, you have doctors that see a concentration of pediatric patients with those combined things.   And so, the doctors who serve these pediatric patients, kids like my son, they know each other.   It's a small world. You know, you think about the small world and the six degrees of separation and all of that.   It is a small world. And so it was really cool that I get to not only know these doctors, but I like to think of Arlo and myself and the advocacy that we do on a medical front helps inform their work, too.   And he and I, this doctor and I shot the breeze to just about disability in general. And you know, the the notions of disability versus language versus person first, language versus identity first, and disability pride and all of the things It's a really unique experience that we have. Right?   I don't know, it's complicated because I think that the life that I live, and I think that the lives that many of us live when we have children. But then you also add the component of having children with disabilities, neurodiversity, complex medical needs. There's not a lot of time for much else in your life, right? Like I don't really do much other than work kids.   And then my advocacy work, like, I, I mean, maybe I could see friends once in a while, but in my free time, I like to, you know, I don't know, serve on my school board and, help other parents. And, if, if there's any time leftover after that, I sleep or I run. So. Yeah, but I don't mind it because then I get to have conversations with these amazing people, and I feel like we get to surround ourselves.   And if we can find joy and honesty and build relationships in those capacities, it enriches our lives and I guess I'm lucky enough to take that experience that I had with the doctor and share that here with others. And and again, because I'm trying this non perfection route, I'm not sure I'm making sense and I don't really plan to go back and overanalyze if it does. So apologies. Y'all can like shoot me DMs or whatever. And I can try to clear it up or do a follow up session, but that's, it is what it is.   And I think that a lot of us have that whether we're foster parents or we are talking to school teams or teachers, I think that we really need to recognize that, yes, we have professionals in our life, but our own expertise means something, and our life experiences.   It's not something that anybody else can inform on.   Your perspective is your perspective, and it's important. And your child is your child, and you usually know what's best for them.   it's it's interesting because I think about parenting and I think about the people in my life that are not affected by having a kid with higher needs.   And I think about these preconceived notions we have of all of it.   It's it's a fantasy world, being a kid, being a parent, being in a marriage, you know, even having a dog, like, it's all these preconceived pictures we have. And the truth is, we're dealt what we're dealt. And you have to learn to play with the cards that you're dealt. And, I don't know, I got a lot of curveballs thrown at me, and I'm just trying to figure out how to hit them out of the park.   But honestly, it's not really about winning, right? I don't know, hitting it out of the park. Maybe that goes back to that perfectionist piece, but. It's really about trusting your instincts and recognizing that even the professionals, even these people that we have in our circles, that are the experts. They're not the experts on your life.   I think about so often, early on in our life, one of the things I was so fixated on, because we have this medical complex of fixing our kids, you know, we want to fix the disability. We want them to conform to everything. I really wanted him to be able to communicate. And by communicate, I mean communicate.   Traditionally, words speak. there's amazing people in in the down syndrome community, like, my friend David Egan. Right. Amazing public speaker. And I just thought that I could give Arlo enough therapy where he would be able to communicate, like David or like, Frank Stevens   And I really worked hard. I had him enrolled in speech therapy and this therapy and that therapy. And so the point where I was just running myself ragged and Arlo's, little brother Emile was in the picture around that time, too, and he was like, I was interrupting a meal's naps to make sure Arlo got to therapy and just missing out on so much joy of parenting, because I thought that therapy was everything and it was important.   But I was lucky enough to have some professionals in my life then to remind me and help me see the forest for the trees. And one of them, was this amazing speech language pathologist. Her name is Molly Wallace. And she and I were talking about, this program coming up. I'm imagining it still exists.   There's a program called Talk Tools and a speech therapist named Sarah Rosenthal Johnson, who I like to call SR.J. I asked Molly about her. I'm like, so, should I do this? There was, the down syndrome Association was sending out emails, and it was like $800 to have a session with her. And if we can get enough families, we might be able to get a a price and knock it down to like 750 or something like that, like $800 to spend a few hours with someone who apparently is a guru of helping kids with Down's syndrome.   Talk by using these tools that can help, with muscle and motor and all of these things in the kid's mouth and things they can chew on, and all of this stuff. And it's like, Molly,   I don't think I was working at the time or I, you know, I've never because of the whole disability tax.   Right. It's not like it's easy for the primary caregiver to have a full time job and make a lot of money. So it's like it's always a struggle. And so $800 is a lot honestly for anybody. Right. And this was 15 years ago or something like that.   And Molly was like, listen, I use talk tools, but I also just use a little bit of everything because there's no magic formula for anybody.   And I've thought about that time and time again since, there's no one guru for any thing at all. Right. Nothing. So not for our kids with disabilities. there's no guru who can fix anything. You know, there's no one book. There's no one. This there's no one therapists. There's no one strategy. My gosh, if there were one strategy, I would have far fewer gray hairs from our elopement or, you know, my other kiddos refusal to do homework. It's just there's nothing. Yeah. You can you can use the whole toolbox of behavioral strategies. And sometimes it's just a matter of your kid getting old enough to be able to handle it, or finding the right medication mix for their brain to be able to do it.   Or it might not just be possible. And I'm not saying possible. Like I hate taking that out of the equation because I don't believe that things aren't possible. But you know what? Sometimes they look different from what, quote unquote able bodied people think is possible. Right? That's why we have accommodations and modifications. That's why we have the Ada, because sometimes what we or what non-disabled folks see is what we should do is really just ridiculous conformity that we need to rethink how we how we handle it.   But I mean, those gurus too, they don't just apply to the disability world. I think about even some of the stuff that I've fallen for. I think I even referenced Mel Robbins and and and her let them theory like, yeah let them maybe that's a cool idea for a couple things in your life, but an overall overarching theme for everything you do is just let them know sometimes them and do what you need to do.   I'm sorry, but no, there is no one anything for anybody. It's just not how it works. We we learn by listening. We learn by trial and error. We learn by trying. Let them seeing. Maybe it works with one thing and it doesn't with another, and trying something else.   So how do I land this plane on what feels like an ever winding path on my in perfect podcast?   Because maybe end with some sage advice from an anti-guru, which is, question everything.   Even yourself.   Ask questions. Reframe questions. Think about things differently. And and stay on top of stuff. I say this again from experience. I thought that had the right team of specialists. And then I realized, no, you need to explore more. You need to dig deeper. Another big medical component that I can't end this podcast without saying, and I probably should have said sooner, is really stay on top of appointments.   And even if. It seems like you're seeing a specialist every year or every other year,   There are so many times where I took Arlo to see specialists, and I left thinking, what was that for? What was that for? Because when you have complex medical needs, you have to stay on top of more blood tests and see different doctors. It's not just a well visit. It's a check in with the EMT, check in with pulmonology, a check in with geneticist or a developmental pediatrician.   And you know, if everything's going okay, it doesn't feel like a big deal. You get the bloodwork every year and you're done or whatever. Those, annual milestone, developmental whatever tests are and you're done. But that complacency can be very dangerous.   Every time in this journey where I have gotten comfortable or I thought, oh my gosh, maybe this is where things will get easier.   I got kneecapped and it got harder. Not me personally, but   something my poor kid actually got some other diagnosis or you know, when he was officially diagnosed with hearing loss,   I had to learn a whole new jargon and vernacular and then finally wrapped my head around that. And then there was a heart issue that came up.   And then, this, this blood disorder that is now entered the picture. But thankfully, because I kept going to those appointments, that felt pointless. We were never a new patient anywhere. We were always able to be referred quite quickly to get all of the help that he needed. And I think that it's important not to feel complacent and not to think, oh, come on, I can just let this go because you can't.   And that's my unsolicited advice. Just don't just stay on top of things, because one day you will likely need it. And if you don't, that's great. Then it's just an inconvenience every year or every other year. But I still remember, and one of the reasons I feel so strongly about this is not even my own kiddo. It was, a friend of ours back in the DC area who had an adult child with down syndrome, who was going through a mental health crisis and because he hadn't had many health issues, they didn't really have things in place.   And I just mentioned to, oh, well, Kennedy Krieger, which is an amazing institution in Baltimore, part of Johns Hopkins, really great facilities for all sorts of complex medical needs.   There was a patient there at the time and I mentioned this the the parent called and because he was a new patient and because he was an adult, I believe the waiting list was two years.   This person was in crisis and couldn't get the help he needed from the specialist he needed for two years. That's the thing with complex medical needs. Because they're complicated, because the the sort of perfect storm of, of uniqueness combines into disorders that it takes,   a very small team of specialists to are tapped into a very small national or even worldwide network.   You really never want to lapse on treatment. You always want to have connections just in case.   And so that minor inconvenience that is totally worth the trade off.   So I'll leave you with that unsolicited advice. And then just to like, leave with a little joy.   Since these thoughts came to me on one of my many, many road trips, which, again, like looking for the joy in life. Arlo is so much fun to travel with.   And since so much of this was going through my head, like I said on that road trip that we had, I'm curious what road trip songs you like to listen to.   Arlo and I love to jam to all sorts of things, and thankfully, his tastes have expanded from Gangnam Style, and   Or the Lego Movie soundtrack. Oh my god, that song really does get stuck inside your head if anyone knows what I'm talking about.   We listened to everything from Radiohead and of course, to Kendrick Lamar to oh, I don't even know. But one of the songs that popped on that I just randomly wanted to share was Just Breathe. And interestingly, the original is by Pearl jam, but Willie Nelson has a cover of it that is so, so, so good.   What are you listening to these days? So next time, next week when I'm on the road again with Arlo, I would love to know if there's something I should check out. Although I'll probably just listen to the same playlist because I like what I like   it is what it is.   Anyway.   Thanks for listening. Please be sure to share with review, subscribe, like, follow or whatever it is you need to get a ping when the next episode drops.   This is the Odyssey: parenting, caregiving, disability.   I'm Erin Croyle. We'll talk soon.    

Most of us are well aware of America's mental health crisis, but lack to tools to support each others and help ourselves.  As mental health specialist and CDC Children's Mental Health Champion Patrice Beard shares, learning to spot the pink flags - those early warning signs that show up before the big red flags - can make a big difference!   he Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  SHOW NOTES: 988 LIFELINE: 24/7 Support for suicide and crisis prevention. Using the 988 Lifeline is free. When you call, text, or chat the 988 lifeline, your conversation is confidential. The 988 Lifeline provides judgement-free care. Talking with someone can help save your life. Mental illness warning signs and symptoms. Understanding what depression looks like in teens. National Alliance on Mental Illness (NAMI) NAMI Virginia More about Kevin Hines, who attmepted to kill himself by jumping off the Golden Gate Bridge and is now a powerful advocate for suicde prevention.  Centers for Disease Control statistics on children's mental health REALISTIC Self Care Strategies for Caregivers How dangerous are phones and screens for teens?     TRANSCRIPT: 01:00:06:18 - 01:00:35:11 Erin Croyle Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. It's something I became intimately familiar with when my first child was born with Down syndrome in 2010. Now I work with the center for Family Involvement Advocates partnership for people with disabilities.   01:00:35:13 - 01:01:05:09 Erin Croyle This podcast explores the triumphs and hardships that we face. We celebrate the joys that the odyssey of parenting, caregiving, and disability bring. But there's no sugarcoating of the tough stuff. Sure, we can do hard things. There's a whole podcast dedicated to the idea, but this caregiving life that we're living, it is next level. It's all consuming in a way that no one can understand unless they're living it too.   01:01:05:11 - 01:01:39:07 Erin Croyle We're so busy doing the hard things, thinking this is just how it is, that we don't even realize how tapped out and burnt out we are. This is why I had to have the CFI's mental health specialist and one of the CDC's children's mental health champions, Patrice Beard, on the show to talk about how we can better support everyone from those close to us, to acquaintances, to strangers, to ourselves.   01:01:39:09 - 01:01:56:03 Erin Croyle Patrice, part of what makes what we do at the center for Family Involvement so unique is that all of us have lived experience that informs our work. Can you tell us how you got started down this path to mental health awareness and education?   01:01:56:05 - 01:02:17:02 Patrice Beard Sure. I started off. I had been off work for a few years. I had originally worked for a medical home, plus, and I got familiar with Danny Yarbrough, our Dana, and, I was looking for a job, and she said, hey, the Partnership's got some admin opportunity part time. Do you want to come work for us? I was like, sure.   01:02:17:02 - 01:02:43:05 Patrice Beard So I started working for Admin Center for Family Involvement and got familiar with the center for Family Involvement. What they do, and then reaching out and helping families and that whole lived experience. I realized that there was nobody on the team. What that mental health look experience that I had. And so then we talked and I said, you know, I can help families with this.   01:02:43:05 - 01:03:11:08 Patrice Beard And she said, okay, well, you'll have to go through the navigator program. So I started talking to families and helping families through that. And then at the partnership, I was struggling. One day I came into work and I was having my daughter, who has some mental health conditions. I was just struggling with her in school and somebody said, hey, have you heard of NAMI, which is the National Alliance on Mental Illness?   01:03:11:10 - 01:03:37:15 Patrice Beard And I realized I had all these amazing programs for families. So I started taking these programs. So I took like family, a family, I took children's challenging behavior. And this was so amazing. And I was sitting in a room with other families who knew my exact experience and who I could talk with, and I could learn. It was an amazing to me that there were all these people that had the same kind of experiences that I had.   01:03:37:17 - 01:03:59:03 Patrice Beard It was just awesome. So I just started soaking it up and taking all these classes. I'm like, okay, I like classes so much now I'm going to learn how to teach them. I would take the training, the trainer classes, and through all of these processes, I was able to get better and better at understanding how to handle and how to handle the situation with mental illness and my daughter and then my family.   01:03:59:05 - 01:04:27:03 Patrice Beard And then I was using those resources to help other family members that would call in to the set up for family involvement. From there, it just kind of snowballed. Anything I could get Ahold of and learn and take and get a certification in is what I would do. With that, Dana saw that, she just allowed me to grow, and then it just kind of developed, and then she kind of said, hey, I think we need a mental health specialist on staff, and here you are.   01:04:27:04 - 01:04:49:16 Patrice Beard So I was able to join the center for Family Involvement team as a mental health specialist. So that's what I do now. And I'm still always taking webinars, and I'm always trying to learn more things so I can help families ultimately, as always, to help families. And now I'm on boards like the Department of Behavioral Health Mental Health Advisory Board.   01:04:49:18 - 01:05:01:01 Patrice Beard I'm asked to do presentations. And so it's amazing. So it's really totally just from all of the experience and having the opportunity at the partnership to evolve.   01:05:01:03 - 01:05:34:19 Erin Croyle Amazing. I'm going to mute real quick and close my door. My mom is visiting, so it's normally really quiet in my house. And she's puttering around in the background. And it's a really beautiful thing I don't get to experience and I love it, but I had to close my door. I want to explain for our listeners, you know, we talk about family navigators, and that's part of what makes the center for Family Involvement so unique, so we have staff who specialize in many things, but we also have volunteer family navigators who are trained.   01:05:34:21 - 01:06:01:06 Erin Croyle And the beauty of family navigators is that they also bring in lived experience, and we're able to connect people who reach out to us. So I'll put that information in the show notes for y'all so people can reach out to us and we find other families with lived experience similar to yours to connect to. And it's such a beautiful thing that even us as colleagues will reach out to one another.   01:06:01:07 - 01:06:21:16 Erin Croyle Just yesterday, I was struggling with something and I reached out to Nikki Brandon Berger, who is my supervisor, and I said, hey, you know, if you know anyone going through this, like, I'm really struggling, can you help me? And it's a very unique thing because when you mix disability and mental health and caregiving and aging parents and.   01:06:21:18 - 01:06:24:16 Patrice Beard All of it.   01:06:24:18 - 01:06:48:19 Erin Croyle It's a lot. And there's not a lot of help for people out there. And I know, like a lot of professionals that we see in the field, they don't have that lived experience. And that's what's so beautiful to me about the work that we do. In fact, you know, Patrice, I'm always looking for reasons to talk to you because I adore you and you just cut through the B.S. and you always tell it like it is.   01:06:48:21 - 01:07:13:06 Erin Croyle And I wanted to talk to you today because there was a moment a few months back when we were all in a staff meeting together, and there was an icebreaker question asking folks to mention their proudest accomplishments of the years. And, you know, all of us have tough times. I'm telling my kids this all the time to look out for the people around you because we put on brave faces, but we don't know what's going on behind the facade.   01:07:13:08 - 01:07:30:08 Erin Croyle And I tried to casually say something in that meeting like, I made it, or I'm still here, and you call me right after that meeting to ask how I was doing. And we hadn't talked for a while. It's not like we call each other every day or every month. It's like a couple times a year that we really talk.   01:07:30:09 - 01:07:52:13 Erin Croyle And so that phone call meant so much to me. And you said that my answer to that question raised a pink flag for you. And that was just such an intriguing concept that I've been wanting to talk to you about it on the podcast. So here we are, and I want to know, what exactly is a pink flag?   01:07:52:15 - 01:08:21:19 Patrice Beard To me, a pink flag is when you know something's off, something's different. There's a concern. It's easy for me to have a pink fly with you because I know you and I know I'm in meetings with you. I know your personality. Sometimes having a pink flag is just being really intuitive and just watching. Just observe things. So when you commented the way you commented, that's not typically how you comment.   01:08:21:21 - 01:08:44:07 Patrice Beard That's not a standard answer for Erin. I'm here is not a standard answer for Erin. I could actually hear a break in your voice when you said it, but I don't know if anybody else noticed that. And so I was like, oh, something's up. Something's up with Erin. And that's how easy a pink flag can be. And it's taking that step after.   01:08:44:09 - 01:09:07:13 Patrice Beard And reaching out, whether it's a phone call, whether it's a text and just saying, are you okay? Sometimes that's all anybody needs to hear. Are you okay? Something's up. But you want to talk to me or not? I'm here. Are you okay? That means a lot to people. I was with my friend at the store. I forgot where we were.   01:09:07:15 - 01:09:28:12 Patrice Beard The cashier was. She was just very abrupt and she was just very cold and rude, but she was just very blunt. I try to make small talk with her and she just wasn't having it. And I guess some people could think, well, she's just, you know, having a bad day or is she just being a jerk or, you know, whatever you want to say.   01:09:28:12 - 01:09:54:10 Patrice Beard But, you know, when people react a certain kind of way to you and you don't even know who they are, it's probably not about you. It's just probably there's something going on. So don't take it personal. But I stopped and I looked at her and I said, are you okay today? How's your day so far? And immediately she like, almost like it was a jarring her whole personality change.   01:09:54:10 - 01:10:10:22 Patrice Beard Like she wasn't even aware the energy she was giving off. I think she was in her brain with what? Whatever was happening, you know, whatever she was going through at that time. But as soon as I said that to her, she just kind of smiled and she kind of came out of it and she goes, thank you. Okay.   01:10:10:24 - 01:10:30:04 Patrice Beard And then when I left, my friend was like, wow, that's impressive. Like she just kind of snapped out of it and she just that really quick. Whereas you see things on TikTok and you see things like videos where people kind of go at it. I just kind of, you, when somebody is kind of has a high energy, I just kind of kind of come in with a low energy.   01:10:30:06 - 01:10:58:01 Patrice Beard That's how I look at it mainly. But for you, Erin, I just know you. And just at work, when I know people at work and they look different and they look not that they're sad or but they're more serious if they don't respond in a way they normally respond. Those are pink flags for me. If they're not talking at all and they usually do that, they're sitting off to themselves and being quiet.   01:10:58:03 - 01:11:14:17 Patrice Beard That's a pink flag to me. So if I had to describe a pink flag, I would say if you know somebody and they're acting any kind of differently. Ask them. Ask them how they're doing. Ask them what they're going through and just go from there.   01:11:14:19 - 01:11:35:07 Erin Croyle I love that and I wonder you know thinking of those situations and thinking how different people are. I think you already said this, but I kind of want to dig a little deeper. You want to ask them how they are, but you want to. I mean, I imagine you want to give them space to not have to respond, right?   01:11:35:07 - 01:11:53:23 Erin Croyle So because they might like I know I cry so easily that sometimes I need to hide because I, I just don't want to have to break down in public all the time. So how do you how would you suggest the most gentle ways to do that, to allow someone the space they might need?   01:11:54:00 - 01:12:19:02 Patrice Beard Oh that's easy. I mean, it's not that hard, is what I want to say. When I help families, who are dealing with mental health conditions in their household, what I'll say is, did you ask, have you asked? And a lot of times they're like, well, no. And it's so it's so obvious. So. Let's take this back.   01:12:19:02 - 01:12:38:15 Patrice Beard Let's just say I called you asking, and I said, Erin, how are you doing? Or you okay, are you okay? And you're like, I'm fine not to talk about it. I'm good. Okay, then call then. Just. All right. That sounds well. Okay. I just was checking in and just know that I'm here, and then that's all it takes.   01:12:38:15 - 01:13:04:05 Patrice Beard That's all it takes. I recognize you, I see you, and I'm here for you. You want to call me, text me. Whatever. I'm here. I have some friends. Joan Bruner, she's one of our regional network coordinators at the center for Family Involvement. I know she is a very proud private person, and she is someone that when you reach out and say, hey, are you okay?   01:13:04:05 - 01:13:28:19 Patrice Beard I'm fine if I like. She just wants to stay busy and she's fine. And that is her personal. And I have to respect that. So we have a code. So when she is feeling, you know, really overwhelmed and she doesn't want to ask for help, but she needs help. The code word is butterfly. So I just told her, I know you don't like to ask for help.   01:13:28:19 - 01:13:52:01 Patrice Beard I know you're very private person, so if you need me to literally get in the car and come to you wherever you are, but you don't want to talk about it, then you text me butterfly and I will. I will be in the car and I will be to you. So that's an extreme version of it. But you can come up with those kind of things too, if you need to talk.   01:13:52:01 - 01:13:58:24 Patrice Beard If you need me to just listen, then here's our code word. If you know somebody.   01:13:59:01 - 01:14:22:03 Erin Croyle I love that. So I like to code word situations that pop in my head are, one, I'm literally on the third round of watching Ted Lasso, once by myself, once with my kiddo, and now with my mom who's in town, because it's just such a beautiful show that touches on mental health and their code word for just speaking the truth is Oklahoma.   01:14:22:04 - 01:14:40:23 Erin Croyle Just cut through the crap and give me the truth. And then another code word in my house for me and my children. When you reach that level of like when you have kids, and sometimes it's like you have to say, come on, let's go, let's go. When you feel it boiling over, instead of letting it boil over, we say Vegemite.   01:14:41:00 - 01:14:58:09 Erin Croyle And that's like, I mean, business. But they're allowed to say Vegemite to me, to say, mom, you got to get off my back. I heard you, you know, you're making me boil over and it's those safe words. I think code words are a tool that folks don't use enough. And I think it's a really powerful tool.   01:14:58:14 - 01:15:09:04 Patrice Beard Absolutely. For us is awesome. I love Ted Lasso. I really like Schitt's Creek. A lot of that has some mental health pieces in it. I just love it. It's just mixture, warm and solid. I really like it.   01:15:09:06 - 01:15:30:04 Erin Croyle Yeah, and Shrinking is another one. I don't know, folks. It's I mean, it's we might as well just let Apple TV sponsor a podcast for us because they got some great material there that I think when times are tough, you know, leaning on shows that make you feel good is a really great escape, which is a total tangent.   01:15:30:04 - 01:15:36:17 Erin Croyle But since we're saying and I mean, what are some other really great escapes for tough times that you might recommend for somebody?   01:15:36:23 - 01:16:00:11 Patrice Beard It's hard for me to recommend anything to anybody because everybody's different. Everybody's self-care is different. Everybody relaxes differently Decompresses differently. Sometimes my decompression is I'll just get on my iPad at the end of the day, if I've had a hard day and I just play silly games just like match three games or, you know, something like Candy crush or two.   01:16:00:17 - 01:16:24:07 Patrice Beard My kids used to make fun of me, but I'm like, I just need just to numb my brain out and not have a focus. I don't want to talk. I don't want to do anything. Just let me sit here and do this. I know some people. It's going for a walk. I know some people. It's weird. People it's for cleaning, right click cleaning or extra stuff, which is totally not my vibe at all.   01:16:24:09 - 01:16:49:00 Patrice Beard Whatever brings you joy, whatever decompresses you, whatever is your thing, do it. My brain really likes the water and the ocean, so after a while, a couple months goes by. I'm like, all right, I need to take a trip to get to the ocean. I need to get somewhere where I hear that that is my meditation. Nowhere else for some reason.   01:16:49:00 - 01:17:10:17 Patrice Beard Even the app on the phone. No, nothing else does for me what the beach does for me. That I can sit and close my eyes and just listen and just. It just takes me, just takes me and I love it. So that's the water is is my place. Some people probably like you like to exercise and run and do all these crazy things.   01:17:10:19 - 01:17:32:05 Patrice Beard So yeah, it's hard for me to recommend anything like that. I would recommend whatever you are doing to be mindful in that act, and try to just focus on it. Being mindful is really easy to do. That was a big hot word there a couple of years ago when everybody was making, you know, like talking, have seminars on it.   01:17:32:09 - 01:17:54:18 Patrice Beard It's very easy. It's just focusing on what you're doing. That's it. Try to get all the extra outside noise. That's why the beach helps me. I just focus on the noise. So if you're running, if you're going for a walk, then you're focusing on nature. You're focusing on what you're seeing, what you're hearing, what you're smelling. Just focus on that and try to get all the extra noise out.   01:17:54:20 - 01:17:57:18 Patrice Beard That's the noise, noise, noise, right?   01:17:57:20 - 01:18:23:18 Erin Croyle It's funny you say that because as someone who has been diagnosed with ADHD later in life, I struggled so much with trying to meditate and trying to do all the things that people recommend that they say are good for you. And what I have found is my meditation is you got me nailed, it is running and it's running, blasting whatever music makes me feel better.   01:18:23:18 - 01:18:47:11 Erin Croyle And a lot of times, man, it was Kendrick Lamar's Super Bowl halftime show blasting that with my kids in the car or on a run, or when the world just makes me angry, blasting some rage Against the machine. I come back and I am calm. And so I love that you said it's you can't say what works, it's what works for you.   01:18:47:12 - 01:19:16:05 Erin Croyle And and it depends on the mood. Because some days it's going for a hike in the woods without any noise. It just depends on on the day. And you know, our show is for caregivers. And so this is helping identify for our children. Like, for example, my son, my oldest has multiple disabilities, Down syndrome. It's hard for him to communicate his needs, but his happy place is by the water throwing rocks in the water.   01:19:16:05 - 01:19:35:17 Erin Croyle And so we try to get out whenever we can. Going by a waterfall, I think. Water. I talked to another one of our colleagues, Jill Rose. Let's just namedrop all of our people, right? She talks about how she's a very spiritual person and how water is just something that can really soothe us as humans and soothe our aura, if you will.   01:19:35:17 - 01:20:11:09 Patrice Beard So anything that you can use your senses, your other senses for is amazing. I always feel like sometimes the hardest place to be is in my own head. And I have to do things that force me to get out of my own headspace. It's kind of easier for me to sit in my headspace. I have to make an effort to get my shoes on and get dressed and go outside and go for that walk, or go get in the car and drive two hours to the water.   01:20:11:11 - 01:20:50:03 Patrice Beard It's much easier just to sit at home. But I have to make myself a priority because if I don't and so much time goes forward, I just sink lower and lower and lower. And I always tell people practice what you preach, but I'm the worst person. You have to take the time to fill your well. If you don't fill your well, for me, filling my well is, maybe watching Schitt's Creek or maybe going to the pool in the summertime, getting that sun, going to the beach.   01:20:50:03 - 01:21:09:06 Patrice Beard That's how I fill my well. And if I don't take the time to do that, then I just don't feel like I'm a good person. So much time goes forward and I'm like, handing out dirt, you know? I'm just like trying to help people with the bottom of my well, and that's why it's so important that I take the time to do what I do.   01:21:09:08 - 01:21:35:03 Patrice Beard It's a tricky thing. The brain is a tricky thing. You can as many bad things as we say to ourselves internally. For me, I know like I can be that person. It affects your brain, right? So if my in dialog is constantly negative, then I'm going to just feel that. Why can't my inner dialog be positive? Why can't I feel myself positive?   01:21:35:03 - 01:22:06:01 Patrice Beard But for some reason we we tend to do the negative. I don't know if it's easier for us. It's harder for us to look in the mirror and find something that we like because of the way we're feeling, but we really need to do better with that. I think I know when my daughter, when she was young and she used to look at herself in the mirror and she'd say, I hate this, I hate that, I hate this, and I'm like, okay, so now look in the mirror again and I want to hear you say like five positive things about what you like about yourself.   01:22:06:03 - 01:22:31:12 Patrice Beard I was listening to a podcast one time about how to retrain your brain to be positive, how you can literally do things, say things to yourself to bring your mood up right, and to get out of that crud. And it's weird. So one of the things was like, brush your teeth with the opposite hand. That kind of stimulates your brain because your brain rewires, restarts, regenerates your brain, right?   01:22:31:17 - 01:22:58:24 Patrice Beard Something with your opposite hand. It's awkward, right, to do things with your opposite hand. That's really good for your brain. Yeah. Another thing he said to do was, look, this was the hardest thing for me. Look in the mirror. Look at yourself. Stare at yourself in the mirror and tell yourself out loud that you love yourself. Just say I love you to yourself in the mirror at least five times.   01:22:59:01 - 01:23:23:09 Patrice Beard And I did it. I don't keep doing it because it's awkward, but like the third or fourth time I said it, I got chills and I started crying. Because I realized, I don't think I've ever said that to myself before, so I would recommend everybody do that. I just think all the negative things we said, our self and our inner dialog so negative.   01:23:23:09 - 01:23:39:21 Patrice Beard I would challenge you every time you catch yourself doing that to say something positive, to counteract the negative and just see what it does. But I recommend, Erin, that you today, at some point out loud, look at yourself in the mirror and tell yourself that you love you.   01:23:39:23 - 01:24:03:10 Erin Croyle I love that idea. I can see how challenging that would be. And I think as parents you recognize how important that is. But you don't do it for yourself because you see how hard your children are on themselves. We're so busy modeling what we I think what we should be modeling for our kids, but we're not truly believing it.   01:24:03:12 - 01:24:17:20 Erin Croyle So the idea that you would take time to actually practice what you're preaching and truly mean it, I will try that. The self-hate. I don't know where we learned that from, but man, we are our hardest critics, aren't we?   01:24:17:22 - 01:24:38:13 Patrice Beard Oh yeah. Absolutely. Talking about pink flags. I would agree, Erin, with what you just said because I think. Spotting a pink flag and others is probably a lot easier than spotting a pink flag in myself, even though.   01:24:38:15 - 01:25:07:10 Patrice Beard It's pretty apparent. So I don't know why. Why are we so likely to observe things and others that we're not willing to observe in ourselves? It's a good question, because I think I'm exhibiting some pink flags here lately. I'm stressed. I'm having a hard time focusing, not exercising like I should. Staying in the house too much.   01:25:07:10 - 01:25:23:04 Patrice Beard I get little reclusive, but I recognize that in myself. I feel like there are times I'm exhibiting pink flags all over the place, so I don't know enough, and I'm not attending to them like I would others. So I guess that's something we should all work on.   01:25:23:06 - 01:25:47:12 Erin Croyle Yeah, and I think especially as women, because as women we are conditioned from day one to be nurturers, to care for others. I and I think it gets tiresome to hear about the mental load we carry, but it needs to not be because we do carry more typically speaking, than a lot of our counterparts. And it's a lot.   01:25:47:12 - 01:25:58:09 Erin Croyle And I don't think we give ourselves enough credit for how much we take on that is just assumed that we can handle it.   01:25:58:11 - 01:26:34:10 Patrice Beard I would say the reason why pink flags are so important in recognizing that is because in the mental health world, we tend to be reactive and not proactive. So if we focused on the proactive, the proactive would be recognizing the pink flags and addressing the pink flags. Is this person securing themselves? Is this person is our hygiene going to, you know, and that you clearly see that they're not taking care of themselves anymore?   01:26:34:12 - 01:26:56:13 Patrice Beard Are they withdrawing? Those are like pink flags that in the mental health world they're warning signs, right? Are they crying all the time or have you not heard from them for a couple weeks? And have you ever had that experience where, like, I've not heard from so-and-so for like a while now? Well, I think that's a pink flag.   01:26:56:13 - 01:27:19:04 Patrice Beard I think that is your pink flag. That is your it's time to text. It's time to make a phone call and just reach out if you haven't answered your phone. Erin Other just texted you. That's all it would have been. Hey, I'm here. Just wanted to check in everything okay? Instead of reacting. Like I said, in the mental health world we are very reactive as opposed to proactive.   01:27:19:06 - 01:27:48:12 Patrice Beard And so when we hear things in the media or we hear things extreme, my question is what were the pink flags? Because I know there were some, you know, and usually when the story comes out and more information comes out and you start hearing experiences that the public have had with an individual or anything like that, there were pink flowers along the way.   01:27:48:14 - 01:28:15:10 Erin Croyle What would you say the difference is between a pink flag and a red flag? When we're talking about mental health, especially considering my understanding of how, suicidal ideation, a lot of times people don't see it coming. So, you know, when you're saying hygiene and staying in more, what's red? What's pink? And it sounds like it's a big old lots of different shades that we're dealing with on a spectrum here.   01:28:15:12 - 01:28:41:12 Patrice Beard Yeah. You're right, pink flags are different for everybody. The pink flag for me was you, Erin was that you responded all right. You didn't respond like you would normally. And I knew enough to know that. And I could hear the break in your voice. So that was a pink flag. If I'm living with somebody, their mood changes for a long period of time.   01:28:41:14 - 01:29:01:05 Patrice Beard If they don't want to go out and do anything and that normally they would, if they're not sleeping, if they're pacing well, you know, normally at night instead of sleeping, they're not they're tossing and turning. They're up. They're not getting their rest of their sleeping habits change. Things like that can be pink flags leading to a bigger issue not eating right.   01:29:01:07 - 01:29:23:03 Patrice Beard And what's important to know is there are circumstances in our lives that we all go through things right? Like if there's a death in the family, a job loss, we all go through things. I'm talking about things that change us for over two weeks. It is ongoing and we are just not getting better. Those are the things I'm referring to.   01:29:23:05 - 01:29:49:06 Patrice Beard Angry a lot of times. I'll tell you a lot of times for women, we cry sometimes, right? That's our pink flag. We're sad. We're depressed. We miss the pink flags with boys because they tend to be angry. They tend to all of a sudden, if you have a boy that's wanting to fight, they're starting to get into a lot of fights in school or being argumentative or just angry.   01:29:49:08 - 01:30:09:05 Patrice Beard And they don't know why they're angry. They're just angry. That's a form of depression. And it's just so different. A lot of times in boys and men. So things like that, like if you notice somebodies personality changing and things like that, those can be pink flags.   01:30:09:07 - 01:30:34:13 Erin Croyle And when you see those, I mean, it's thankfully the stigma around talking about mental health is lessened, but it's still there. You know, it still gets an eye roll or the brush off. So how can we talk about mental health in a productive and proactive way? How can we get that loved one or close friend? It's not as easy as saying, oh, that's a mole.   01:30:34:13 - 01:30:41:13 Erin Croyle You need checks, right? How can you get someone the help they need? Whether it's a pink flag or a red flag?   01:30:41:15 - 01:31:12:15 Patrice Beard I really think that's the million dollar question. I still think we have a long way to go with that. I think just letting somebody know that we're here for them, whether it's using a code word or, sometimes we want to fix things, and sometimes we just need to remember that if you just let somebody know, if you just want to talk, and I'll just be here to listen, sometimes you just want to talk and just have somebody listen to you.   01:31:12:17 - 01:31:32:07 Patrice Beard You know, when we're going through stress and I've got something in my head going over and over and over and over. Never. Right? Works both ways. I have to say to my spouse or to my friend, I'm going through something right now and I really want to talk about it. I really need to vent. I you open to hearing me right now.   01:31:32:07 - 01:32:17:08 Patrice Beard Are you in a good headspace to hear me right now? Can I vent with you? You don't have to say anything, but do you have the head for right now? And she's either yes or no. And then if it's yes, then I've been just trying to be there for one another and just being and just listening. You would be surprised how just giving somebody an ear and just sitting and listening, and also being a mental health specialist, I have to say, if ever you feel like after somebody is talking to you, if ever there's a question, if ever anybody says anything about hurting themselves or not wanting to be around or wondering if life would   01:32:17:08 - 01:32:46:02 Patrice Beard be better without them around or wanting to end their suffering or things like that. Always ask the question like, I hear you saying these things. Do you feel like, are you thinking about killing yourself or hurting yourself? Don't say committing suicide or don't make it fancy. Don't say don't use. Just be very blunt. I'm a little worried about what I'm hearing.   01:32:46:02 - 01:33:05:22 Patrice Beard Are you thinking about killing yourself or hurting yourself? Ask the question. Never be afraid to ask the question and I always say that to the parents I speak with when I'm here, and certain things about what's what they're saying their child is going through and these things that their child is saying. And I'll say, have you asked them if they thought about killing themselves?   01:33:05:24 - 01:33:27:04 Patrice Beard Well, no, I don't want that to happen. Or they'll start whispering to me. I'm like, well, why are you whispering? Like, you know, you don't want to be that parent. That's surprised, right? If you feel it, if your spidey senses are going off, or if you're seeing little pink flags and or hearing things that just ask, you must ask.   01:33:27:06 - 01:33:53:10 Erin Croyle That was the most interesting thing. I interviewed someone, many years ago at this point, who works with suicide prevention in Veterans Affairs, and I was surprised that, you know, you you don't try to shy away from that question. You're better off making it an open topic of discussion. That is the healthiest way to handle it is to bring it out into the open.   01:33:53:10 - 01:34:15:03 Erin Croyle Is there? I still don't I mean, I guess I understand why these are such difficult things to even speak of, because it's just so heartbreaking to to think that someone might think that that's the answer to ending the pain. Can you share anything about the research behind why it's so important to talk about it?   01:34:15:05 - 01:34:35:13 Patrice Beard There is no increase of somebody, somebody trying to kill themselves just because they've talked about it. It's not something that you ask them and they're like, oh, I wasn't thinking about it. But now that you said it, I mean, it's just it's just not. They've done studies on people who have tried to kill themselves, and they've asked them, would it have helped if somebody had asked?   01:34:35:13 - 01:34:50:14 Patrice Beard And the answer is yes. It doesn't harm you when somebody asks if you want to. And the answer was no, that's not it. I'm thinking about it or I'm not. Somebody is not putting that thought in my head. Are you familiar with a Kevin Hines?   01:34:50:16 - 01:34:52:00 Erin Croyle No.   01:34:52:02 - 01:35:23:01 Patrice Beard Okay. So he travels the world and talks about his suicide attempt. He jumped off the Golden Gate Bridge and survived. It's an amazing story. You may want to research it. He's got a short documentary ending now. Travels the world. He woke up in the morning knowing that he was going to go to the Golden Gate Bridge and jump off and kill himself, and he talks about how he runs into his father knew something was off, which was interesting to me.   01:35:23:01 - 01:35:43:00 Patrice Beard His father knew something was off. So his father saw a pink flag and didn't address it. His father said, hey, why don't you come to work with me today? Because he knew something wasn't quite right. And he goes, no, I'm good. I'm not going to go to work with you. But he didn't say, are you okay? What's going on?   01:35:43:02 - 01:36:03:22 Patrice Beard Where are you? Go. You know anything like that? He said on his travels to the Golden Gate Bridge that day. At any given time. And somebody stopped him and asked him if he was okay and if he was going to kill himself, he would have told them yes, he was full on ready. I mean, he was ready. He was going.   01:36:03:24 - 01:36:31:09 Patrice Beard It's a very interesting story. He did jump and he said immediately when he jumped, he was like, oh, I don't want to do this. So now his mission is not only going around and sharing his story, he also has interviewed and talked with a lot of, suicide survivors. And they have all said immediately after they're like, no, this is not what I want to do.   01:36:31:11 - 01:36:34:24 Patrice Beard So I think you're just feeling desperate in a situation.   01:36:35:01 - 01:36:43:05 Erin Croyle I imagine, to be in that place, to know that someone cares enough might make you feel as.   01:36:43:07 - 01:37:12:10 Erin Croyle It's worth living. It's such a tough subject. It's funny. I'm worried about saying the wrong thing in this interview and part of me is thinking I should edit this out, but not this all out. But my stuttering and rambling. But I think it just goes to show what a delicate subject it is and how I think talking about it and learning, and to talk about it openly without feeling as if it's taboo is important, especially with the rates on the rise.   01:37:12:10 - 01:37:16:21 Erin Croyle So much just knowing that we can and should talk about it.   01:37:16:23 - 01:37:36:23 Patrice Beard It's on a slight decline finally, but especially for children. So suicide is the second leading cause of death for teens and young adults ages ten through 34. And that's a study done from the CDC in 2023.   01:37:37:00 - 01:38:03:12 Erin Croyle That's shocking and honestly heartbreaking. Patrice, if you're a parent who maybe your young child's mentioned it or you have suspicions aside from talking about it, I mean, is there things that you should do at home to look out for them, like hiding knives and razors? I mean, how should you handle that if you're worried about a young child, right?   01:38:03:14 - 01:38:06:11 Erin Croyle Who might be having thoughts of suicide?   01:38:06:13 - 01:38:37:17 Patrice Beard Right. It's it's really scary. The first thing is, if you think of your child, if you ask your child, do you want to kill yourself or your child says, I want to kill myself, I'm going to kill myself. Then I would say, well, what is your plan like? So sometimes, you know, we know our child, right? Sometimes a child will be very dramatic, will say, oh, I want to kill myself all blah, blah, blah, you know, and and that's an opportunity to have a very stern, serious conversation with your child.   01:38:37:17 - 01:38:56:21 Patrice Beard Do you mean this because you have my full attention right now? Are you truly feeling this way? Because if so, I've got you. I will take care of you. We will get some help. I want you to not have to feel like this. So pay attention to it. They need to know that if they say this to you, you will take it very seriously.   01:38:56:21 - 01:39:15:06 Patrice Beard That is not something you just said. If of course, number one, if you feel like your child or your child tried to kill themselves, your child is looking at you saying, I'm going to kill myself. If they have a therapist already or a psychiatrist already, you want to reach out to them and let them know what's going on and get further instruction.   01:39:15:12 - 01:39:32:19 Patrice Beard If you don't have anything like that, then you want to take them to the pediatric e.R and drive them there and get evaluated, and let a pediatrician come in and speak to them and decide what's the best course of action to take.   01:39:32:21 - 01:39:54:16 Erin Croyle Man, Patrice, we've gone from, you know, pink flags to suicide. And it feels heavy. So I really want to just make sure we touch on what some of the most positive developments you've seen around mental health are, and, but also places we need to grow. Can you tell us a little bit about that?   01:39:54:18 - 01:40:23:12 Patrice Beard Well, that we talked about before stigma is better right. Especially in schools. Schools are talking about mental health now and acknowledging that mental health is a very serious thing. And it's just as important as our physical health, mental health. We've actually gone on to talk about mental health for our teachers. So when I do presentations now, it's not just about the children's mental health.   01:40:23:12 - 01:40:57:03 Patrice Beard It's also about the teachers mental health. So we are coming to a better understanding that mental health affects everything. It affects grades, right? It affects relationships and affects test scores. It affects everything. And I think having that acknowledged now and how important that is, I think we've come a long way with that. I don't remember when I was a child teachers talking to me about mental health.   01:40:57:05 - 01:41:04:05 Patrice Beard I mean, do you remember that at all? And now they have curriculums about it.   01:41:04:07 - 01:41:05:16 Erin Croyle Oh, absolutely.   01:41:05:22 - 01:41:30:10 Patrice Beard And that has come so far. It's come so far in a short amount of time. I'll say my child is 30, and I'll tell you when she was in elementary school and going through things and running out of the classroom and having panic attacks, my instruction was just to come get her and get her out of there because she was being disruptive.   01:41:30:12 - 01:42:02:11 Patrice Beard I had an experience where my brother had passed away. My kids were in elementary school, and she was having a hard time in class. I was having a hard time getting up in the morning and getting my kids to school. So they were there were laid a lot, five, ten, 15 minutes late a lot. And for anybody that has kids in school, you know, at least in the county that I was, living, if you're tardy so many days that it counts as an absent.   01:42:02:13 - 01:42:21:05 Patrice Beard So if you're tardy, like five days, then you get an absent. I remember I was called into the office that I dropped the kids off one day, and it was full knowledge that my brother had died recently and what was going on. So that should have been paying folks to the school, but to the teachers, to the school.   01:42:21:06 - 01:42:49:22 Patrice Beard They all know what was happening. They all knew what took place. And instead of acknowledging or reaching out and saying, how can you support you? We know that you're going through a lot. We see that your kids are late. What can we do? And things like that. They decided to bring me in to the office with the teachers there and the social worker, break me and shame me and want an explanation of why my kids were late for school.   01:42:49:24 - 01:43:12:06 Patrice Beard And so I completely went off and I left them all sitting there with their mouths open and basically saying, shame on you. Up and walking and getting up and taking them to school. You should be happy about that. You know what I mean? So from that to the way things are now, I don't think that would have ever happened to what happened now.   01:43:12:12 - 01:43:36:04 Patrice Beard So I do think schools have come a long way. The latest statistic that I saw that that the suicide and self-harm arch is going down with kids. So the study I just told you about from the CDC was 2023. Takes a while to get statistics back from studies, but I'll probably do another study in like 26, 27 and, you know, see that is starting to go down a little bit.   01:43:36:09 - 01:43:54:10 Patrice Beard So I think that's great. And I think just acknowledging it's great, I think by acknowledging it and having schools talk about it, kids feel more comfortable talking about it where we didn't talk about it when I was growing up or because it was a it was a stigma, was a shame, like mental health. What is that back up?   01:43:54:12 - 01:44:07:09 Patrice Beard I mean, we knew about bullies and we had bullies in our schools and how it affected us and how it made us feel. And but now it's a different thing. So I think we've come a long way. I think we can come even further.   01:44:07:11 - 01:44:17:07 Erin Croyle Yeah. And I mean, it also starts at higher ed where there's education about this for not just special ed teachers, not just social workers, but for all educators.   01:44:17:09 - 01:44:37:08 Patrice Beard Right. And how many social workers do you have in one school? Right. I mean, sometimes you have social workers that have multiple schools, and half the time all they're doing is the IEP stuff or the 504 stuff. So they can't really focus. And then you've got the counselors doing that as well. And then for my daughter, she had a counselor assigned to her in high school.   01:44:37:14 - 01:44:57:12 Patrice Beard And all that counselor did was paperwork. And if she was having a meltdown or feeling bullied or anything, she would say, oh, come on, sit in my classroom. But there was no interaction there. And I don't know, it's just I don't know. The answer is there's a lot going on there. I think obviously money is at the stem of it.   01:44:57:12 - 01:45:03:01 Patrice Beard All right. So we could do anything we want if we had all the money in the world.   01:45:03:03 - 01:45:40:14 Erin Croyle Yeah. When that I mean, that just kind of. And I don't want to end on something negative, but I do really want to, and maybe it's not so much a question, but just one last part of this conversation when we talk about taking those mental health days and taking those breaks that you need and self-care, it's something that I have explored in this podcast and in my writing and in my own life, where when you do attempt to take care of yourself, you have to put other things aside.   01:45:40:14 - 01:46:05:14 Erin Croyle And so when you then reenter, taking a break or taking a vacation or recovering from surgery or taking care of a sick family member, then you have to catch up and it's like you're trying to get the help you need to be better, but you're coming back to four times the amount of work that just piles on. So how do we support one another in fixing this?   01:46:05:16 - 01:46:15:13 Erin Croyle How do we spread the word about the way that we function as a society needs to change? I mean, how do we make this better?   01:46:15:15 - 01:46:32:01 Patrice Beard Well, like I said before, we all have to. What works for me when it not work for you might not work for another person. So one person going away to the beach while I have the money to do that, and I have the time to do that, not everybody has that. That's why I said one size doesn't fit all.   01:46:32:03 - 01:46:56:09 Patrice Beard So it could be your time is soaking in a tub for 30 minutes. It could be you're in your room doing something for an hour. I would say, be gentle with yourself and not make it so extreme. That's unattainable. You can get your self-care and you can feel your well. However your life circumstances allows you to do it.   01:46:56:09 - 01:47:13:11 Patrice Beard Take that time and do it like I don't want to say one size fits all. I don't want to put any more guilt on a parent that probably already has so much guilt. Oh my gosh, now what am I doing? Self-care. Right now I don't have I don't have the money to do that. I'm a single parent. I can't do this.   01:47:13:11 - 01:47:31:11 Patrice Beard I can't do that. So just do what works for you. If I can give any kind of advice at all, I would just be be gentle with yourself. Stop. Stop beating yourself down. You're doing the best you can. Do whatever you can with what you have. Maybe it's just talking to a friend on the phone. Just chill. You know what I mean?   01:47:31:11 - 01:47:58:18 Patrice Beard Just take that time. Sometimes I'm talking to a parent on the phone, and the whole time we're talking about their child, their child, their child, their child, I will always make time to say, okay, now let's talk about you. What are you doing to take care of you? And a lot of times if they've been talking nonstop for an hour, that's the only time they'll be silent because they're stopping and thinking what happened.   01:47:58:20 - 01:48:31:20 Patrice Beard Like I'm so focused on my child and understandably so that you've forgotten about yourself. So what are you doing to take care of you? There's always something you can do, whether it's sitting outside on your front steps or taking a quick walk or binge watching or I don't know what. There have been times my husband traveled a lot, and there were times where I've had to put up my boundaries and say, I don't have the energy for this right now.   01:48:31:22 - 01:48:51:17 Patrice Beard Give me an hour. And I don't think there's anything wrong with that because I think your modeling behavior, your modeling, your behavior to your child, like I'm taking care of myself right now. I'm giving myself I'm important to love you, but I need an hour and then I'm going to connect that with you. And then I'll listen to what you want to talk about.   01:48:51:19 - 01:48:56:24 Patrice Beard You know what I mean? So modeling that behavior is so important.   01:48:57:01 - 01:49:26:11 Erin Croyle I do, and when you're saying this, I'm thinking because a lot of times I like I ask questions because I'm trying to think for myself. And, and families like myself and parents like myself, we allow ourselves to get to such a level of burnout where we feel like we need to just lay in bed for a day, and that day, then everything stacks up where, as opposed to that, I think we need to think about it like chipping away at a statue slowly.   01:49:26:14 - 01:49:57:19 Erin Croyle What are the five little things I can do of self-care to just maintain, whether that be filling the water bottle and drinking it, making that doctor's appointment, going and answering emails on the deck instead of in a dark office. I think there are such, preconceived notions and honestly, the commercialization of self-care. But we really need to reframe what it is taking care of ourselves looks like.   01:49:57:21 - 01:50:22:05 Erin Croyle So we're talking a little bit about how to care for ourselves. But the pink flags are also about people around us who might not have the privilege to listen to a podcast like this. To understand Patrice, I keep thinking about the person you mentioned to at at the checkout counter and, and I wonder what are the things that we can do throughout our day for those around us?   01:50:22:05 - 01:50:48:16 Erin Croyle Like I tried to say, oh my gosh, I like your nails or something. When I'm somewhere for someone who doesn't have a job like yours and mine, where we can work from home. So for the people who might be having the worst day ever, but they've got to be public facing, what can we do to show kindness even if people aren't showing a pink flag but might be going through some stuff?   01:50:48:18 - 01:51:12:22 Patrice Beard I think you just hit the nail on the button by showing kindness, just being observant and just being kind, just being nice sometimes just smiling to somebody just once. So how how was your day? How are you doing today? Like, that's all I did with that person that was working the cash register. I could tell something was maybe not, but she seemed a little, like very serious and abrupt.   01:51:12:24 - 01:51:30:02 Patrice Beard Or she was kind of looking past me and not even know at me. And that's why I said, how's your day? How was your day? And she immediately is almost like you could see her shaking something off, you know, and she just kind of she was all, thank you for I'm like, okay, you know, just being kind to one another.   01:51:30:02 - 01:51:49:04 Patrice Beard I know that sounds silly, just being kind to one another. We are all going through things. That's what helps me remember it, because have you ever been in a situation where you in the car or you're somewhere and you snap at somebody or you or you're like somebody cut you off and and you're like over the like, I know me, I'm a road ranger.   01:51:49:08 - 01:52:16:15 Patrice Beard Like some funny type of like how I'm responding. I'm like, well, gosh darn, you know, like, that wasn't about me. That wasn't about that person. What? My goal. Like, I need to check myself. I'm. I'm stressed. I'm aggravated, I'm mad at somebody or whatever the situation and and how I react to others. I try to remember that. So when I'm on the receiving end of that, it helps me to remember that's not about me.   01:52:16:17 - 01:52:27:22 Patrice Beard That's that's not about me. So I'm not going to react to that. I'm just going to try to take it like you. Good. That's what I tried to remember and that's how I try to behave.   01:52:27:24 - 01:52:57:11 Erin Croyle Well, I love that you mentioned the car as well, because I think especially with how much time we all spend online and when we're our cars, we feel like when you're not face to face, whether it be comments on social media or in your car, there's a level of of animosity we give to one another where, man, it's really nice when someone just waves when they let you in on the highway or.   01:52:57:12 - 01:52:58:01 Patrice Beard Yeah.   01:52:58:03 - 01:53:19:10 Erin Croyle You just either don't comment on social media or give a heart on something, or just the kind of scenarios where no one even has to know who you are remembering. Like if you were talking that way to someone to their face, how would you actually say it? And probably the best example and and for people who are listening, they probably deal with this a lot.   01:53:19:11 - 01:53:42:20 Erin Croyle You know, the amount of phone calls we have to make to insurance companies to handle medical bills or whatever, and those phone trees. And by the time you've hit the button and gotten cut off and you actually talk to a human, I literally have to check myself because I get to a level of frustration, and then I kind of vent at them and I'm like, I am so sorry, you're just the messenger.   01:53:43:01 - 01:53:52:12 Erin Croyle I pull myself back and I'm like, oh my God, this is a human on the other line. So just remembering the human on the other side of whatever interaction we're at.   01:53:52:14 - 01:54:23:19 Patrice Beard Going through, going through the same stuff to right, right. We're all going through stuff. This is hard times right now. We are all going through things. But I think if we all will just allow grace, respect, and just like, you know, keep your mouth shut. I have to say it, social media is horrible. I love like scrolling through different things, but it's amazing to me like I'll have to tell like family members don't be on it.   01:54:23:21 - 01:54:47:21 Patrice Beard Like if it stresses you out, if it's causing you what I'm saying, cause you get out of it. That's the only thing. The only thing you can control is yourself. That's it. That's it. So thing you have control over is how you react to things. So if something is making you upset and causing you this kind of emotion, get off of it.   01:54:47:23 - 01:55:05:19 Patrice Beard You know, I mean, I think I'm like the polar opposite. I keep my head in the sand. I don't know what I think that's going on, because to watch the news, to watch these things, it just sends me to where I can't sleep. It robs me of my peace. Oh well. Anything to rob me of my peace. I think that's why sometimes I get secluded in my house.   01:55:05:19 - 01:55:21:10 Patrice Beard Because I'm like a peace here. Oh, look at my a little bubble, which is, like, not the best thing to do. But yeah. So anybody to rob me of my peace, if I can control that, if I know what's doing that to me, then I'm just not going to do that anymore. Yeah, I'm not going to be on social media.   01:55:21:10 - 01:55:42:06 Patrice Beard I'm not going to watch the news. And at the same time, I don't want to talk about it either. And I have that right to do that. So if somebody is venting about something that causes me, then that's that boundary. We talked about. I don't want to talk about that. And I think if anyway, I'm just get off on a tangent, Erin.   01:55:42:06 - 01:56:04:14 Patrice Beard But this social media is just killing me. My my daughter. I don't know why, but she posted her picture on this platform because she thought that it was a woman empowerment platform and that they would give her pointers, if you will, about her appearance. On what she could do to improve. And I'm thinking what in the world do you think?   01:56:04:16 - 01:56:21:19 Patrice Beard She said within minutes she was in tears because these women were coming after her heart, just, oh they have souls like, you know like about her hair and the glasses like this and this or this. I'm like, why would we do that to one another? Why would we go out of our way like you were talking about social media.   01:56:21:19 - 01:56:31:15 Patrice Beard Why would we go out of our way just to be nasty to one another when it was just as easily just said, go, girl, you rocket, you know, give full or just scroll through it, right? But I don't know.   01:56:31:18 - 01:57:04:20 Erin Croyle We're just you know, I think sometimes people think being on their phones is self-care, but there are studies that show that all that time is actually really not great on our brains. And we're just it's the tip of the iceberg, what we're learning about how hard it is for us. And when I think about how addicting that scrolling can be as an adult who wasn't introduced into that until like their 30s and our kids being integrated into it now, yeah, that is some scary stuff.   01:57:04:20 - 01:57:24:18 Erin Croyle And I think when we talk about mental health, we really need to learn boundaries and recognize that a fun show is one thing. But the rabbit hole that social media and even YouTube can take you on that can actually have some really negative impacts. And we have to really, really be careful for ourselves on there.   01:57:24:20 - 01:57:29:20 Patrice Beard I can fall into that sometimes. I'll just like kind of like badge and especially with my ADHD.   01:57:29:22 - 01:57:30:13 Erin Croyle Yeah.   01:57:30:15 - 01:57:52:23 Patrice Beard Just that whole squash golf ball scroll, scroll. And then I just like how and then I'm thinking afterwards, how am I feeling now? Like, where am I right now? What where is my head right now? Am I am I smiling like when I watch Schitt's Creek or Ted Lasso? Am I smiling or do I feel, like I'm not anxious?   01:57:52:23 - 01:57:58:15 Patrice Beard Right? Because being in tune with yourself and how you feel and when you're doing something. Yeah.   01:57:58:17 - 01:58:18:04 Erin Croyle Well, Patrice, we're way over time, and I adore you. And I want to thank you. And I also want to say that after we're done here, I'm going to go in the mirror and very uncomfortably tell myself that I love myself five times. Five times. You better do the same. You said it's been a while.   01:58:18:06 - 01:58:18:17 Patrice Beard Yeah.   01:58:18:17 - 01:58:24:19 Erin Croyle And now feeling your own pink flags. And I'm seeing some. So why don't we both go do that and be very uncomfortable?   01:58:24:21 - 01:58:26:11 Patrice Beard Yeah. Sounds like a plan.   01:58:26:13 - 01:58:27:22 Erin Croyle Thank you so much, Patrice.   01:58:28:02 - 01:58:31:15 Patrice Beard You're welcome. Thanks for having me. Always great talking to you, Erin.   01:58:31:17 - 01:58:39:03 Erin Croyle Right back at you.   01:58:39:05 - 01:59:07:20 Erin Croyle And thank you, listeners, for joining us. And please join Patrice and I in the I Love You practice. Go stand in front of a mirror and tell yourself with sincerity that you love yourself five times. Of course, you have to report back. I want to know how it made you feel. And while you're at it, be sure to share, review, subscribe, like, follow or whatever it is you need so you get a ping.   01:59:07:20 - 01:59:18:13 Erin Croyle When our next episode drops. This is the Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.                

For so many of us, the idea of self-care is a joke. And for good reason. There are literally not enough hours in the day to do what's "required" of us, let alone take a break to focus on ourselves. Rather than telling you why you need to make time, this episode offers validation. And some tangible takeaways that are actually doable!  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  SHOW NOTES: Carolyn Hax is the syndicated advice columnist with The Washington Post mentioned in this epsidoe.    SLIDES:             TRANSCRIPT: 01:00:06:24 - 01:00:34:24 Erin Croyle Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My seismic shift came when my first child was born with Down's Syndrome in 2010. I've been going virtually nonstop ever since I joined the center for Family Involvement at Lucas Partnership for people with disabilities. 01:00:34:24 - 01:01:03:14 Erin Croyle A few years after he was born. Utilizing my journalism and TV producer skills as a communications specialist, a topic that comes up time and time again in my work and my life is self-care. And for good reason. If you ask a parent who's also the primary caregiver in their family their thoughts on self-care, you'll probably get an eyeroll or a laugh or a stare down that feels like daggers shooting right through you. 01:01:03:16 - 01:01:30:08 Erin Croyle The reality is, for so many of us, the idea of self-care is a joke. So rather than me talking about how important it is and why you should prioritize it, I'm going to break down why self-care is practically impossible. Instead of the usual self-care gaslighting, it's time for some validation as to why we either can't seem to make it happen or suffer when we do. 01:01:30:10 - 01:01:41:09 Erin Croyle And maybe offer some practical, attainable ways to take care of you. 01:01:41:11 - 01:02:06:19 Erin Croyle Real talk as usual. I actually have an interview with our mental health specialist, Patrice Behar that's in the can that I can't wait to share with you. And I've got a few other interviews that I can't wait to line up and do, and, I mean, I say this over and over again because it's true. Things are just relentless in my life, and I know that I'm not alone in that. 01:02:06:21 - 01:02:34:23 Erin Croyle In the past month, I did a talk about self-care to, caregivers in Ohio, where I'm from. Shout out. Represent. Love that state. Even though it's the butt of so many jokes, especially with my, Gen Z Gen Alpha kiddos. Anyway, what kept resonating with me is I was like, struggling. Finding time to edit that interview with Patrice is to practice what I preach. 01:02:35:00 - 01:03:06:11 Erin Croyle So I recognize that I have been bombarded with life. And as parents and as humans, that's what happens. But what we don't really take into account is that as caregivers, that happens sometimes times a thousand, right? In this past month, my oldest kiddo, Arlo, who has multiple disabilities, including Down's syndrome, got really, really sick and when he gets sick, it's it's real, right? 01:03:06:12 - 01:03:34:08 Erin Croyle A cold can knock him out and put him in the hospital. And funny enough, while I was giving that, workshop on self-care was when he walked into my office and started coughing and literally interrupted and I heard the cough and I said, for example, I'm probably going to have to manage his stuff. And sure enough, the next day I was on the phone with pulmonology, and since then I've had to rearrange a sleep study, and he was out of school. 01:03:34:08 - 01:03:51:11 Erin Croyle And the steroids and other medicines he's on has has just kind of put him out of whack. And I've had to help with his anxiety getting him back to school. And the other two kiddos were really, really sick. But at different times. So then they were off school. And so of course I was sick. But that doesn't matter. 01:03:51:11 - 01:04:33:03 Erin Croyle You know, we power through as parents when we're sick. It doesn't matter. So I was coughing up a storm and managing and that's what we do. But when it came time again to edit this interview and I was like, how am I going to do it? Instead of staying up and pulling all nighters like, you know what? I'm going to give that the time it deserves, and I'm going to practice what I preach, and I'm just going to go ahead and try to riff through a podcast on my own and do this presentation one, to remind myself why things that seem to be doable are so impossible, and why deadlines that we set for ourselves. 01:04:33:05 - 01:05:05:12 Erin Croyle We have to give ourselves so much grace. And also why, even though I a lot for ample time to get all the things I need to get done, done. Rarely do I ever get anything done. And it's not for lack of trying and it's not for not constantly working. I don't rest, I don't practice self-care enough. But what I have preached and what I recognize is that my form of self-care this month was saying, you know what? 01:05:05:14 - 01:05:30:07 Erin Croyle My April podcast is going to come out in early May, and hopefully I will edit my Patrice interview for my May podcast and get it out in May. And let me talk about why, because that validation and the relation and understanding that we're not alone in this and pretending that everything's fine and it's not, it is hard and it seems like the hard never ends. 01:05:30:07 - 01:05:52:22 Erin Croyle And I don't know if that's middle age or parenting or caregiving or the world we live in, but hey. So without further ado, I'm going to go ahead and roll into my workshop on Self-care for caregivers, which I probably should have titled Self-care is a joke that We Need to Take Seriously. As I said in my intro, I'm Erin Croyle. 01:05:52:22 - 01:06:14:20 Erin Croyle I'm from Ohio. I am a journalist, a writer, a speaker, a podcaster. I'm a parent, I'm a caregiver, and I'm an advocate for disability rights and just human rights. In the show notes, I'll probably put the slide presentation in there, but you're listening to this, so I'm going to kind of present based on slides, just, just take a listen and sort of picture this, okay? 01:06:14:20 - 01:06:29:01 Erin Croyle And reflect on these words that I'll say very slowly. Be honest. What is your gut reaction to the term self-care? 01:06:29:03 - 01:06:58:01 Erin Croyle Now take a moment to really think about it. Because for me, I really do roll my eyes. We all know that it's important, but for many of us it feels or truly is unattainable. And in my opinion, the term itself is totally overused. And that's because the term self-care has been hijacked and commercialized by influencers, and the whole wellness industry. 01:06:58:03 - 01:07:26:23 Erin Croyle So take a minute to think what self-care truly is. According to the World Health Organization. Self-care is the ability of individuals, families, and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health worker. It has origins in the medical community. It has long been encouraged for professionals involved in trauma. 01:07:26:23 - 01:08:04:20 Erin Croyle So you think first responders, doctors, therapists, people really on the frontlines of the toughest stuff that we're dealing with. It has roots in the civil rights movement and the women's rights movement, and it is critical for people with disabilities and their caregivers. Poet, writer, mother, activist the late Audre Lorde said, overextending myself is not stretching myself. I had to accept how difficult it is to monitor the difference necessary for me as cutting down on sugar crucial. 01:08:04:22 - 01:08:33:01 Erin Croyle Physically, psychically caring for myself is not self-indulgence, it is self-preservation. For those of us living as both parents and caregivers, the old adage that life is a marathon and not a sprint doesn't apply. Our lives are both a marathon and a sprint with no built in water breaks. That's why we really have to look to taking those breaks. 01:08:33:03 - 01:09:02:01 Erin Croyle They say that comparison is the thief of joy. But for us, comparing our lives to parents of neurotypical, non-disabled kids is a form of truth that can set you free. Like it or not, our lives are vastly different. My brother has two children who are similar ages to my three children. His boys are 15 and 12. Throughout our entire existence as parents, it's been really eye opening. 01:09:02:03 - 01:09:25:15 Erin Croyle Like I have always kind of looked in compared. And in the early years it was kind of hard because it hurt, because I was still accepting and grieving that Arlo's life would never be the life that you envision as a parent. When you have a kid, because most parents don't envision becoming parents to a child with a disability that will need lifelong support. 01:09:25:17 - 01:09:45:11 Erin Croyle You just don't. It's not in it's not in most movies. It's not in the fairy tales. It's just not. It's not what you imagine. And so those early years, I was able to look and just kind of see those developmental differences. That kind of stung. I was able to observe how much work it took just to help my son walk, as opposed to his kids just doing it. 01:09:45:13 - 01:10:17:20 Erin Croyle And sometimes, I don't know, I felt a certain kind of way. Never jealous, but just melancholy sometimes. And then I had another kiddo who was a similar age to his second kiddo. And Amelia's is now 12. And so I saw like, oh, I recognize that if you have a neurotypical typically develop meaning, right? I use quotes with those because those terms aren't great, but what other way are you going to say it? 01:10:17:22 - 01:10:41:00 Erin Croyle Do you have a non-disabled kiddo? Those milestones come naturally. There's no early intervention. There's no physical therapist showing you how to help your child move a certain way. There's no speech therapist helping with feeding and building muscle strength. Your kids just do it. And I still remember a meal starting to walk at nine months. And I was just like, wow, that just happens. 01:10:41:02 - 01:11:03:19 Erin Croyle So it got easier. But then there's little moments all throughout where I see the differences. And so now, my brother's oldest is starting to drive, and that's something I don't think I will ever do. Even when we do go cart riding, Arlo likes to, have me drive and we get a little tandem seat. And I'm so lucky that we have that nearby where we live, because it's really cool. 01:11:03:19 - 01:11:32:02 Erin Croyle And the person that runs the place is amazing. I highly recommend finding amazing people who understand how huge little things like that are, but there's things that we just take on naturally as caregivers that are normal, that my brother or, you know, people who have non-disabled, neurotypical kids just cannot fathom. So the little things like, okay, they have the anxiety of teaching their oldest to drive. 01:11:32:04 - 01:11:54:22 Erin Croyle But then when he's able to drive, he's alleviating some of the stress from my brother and and his wife where my nephew's going to drive, places, he'll be able to pick up his his younger brother, my other nephew, and their lives will get easier. And just just seeing them when we hang out together, the things that his kids are able to do independently, that don't come naturally to mine. 01:11:54:22 - 01:12:28:15 Erin Croyle Because, you know, not only does Arlo have significant support needs, but there's no divergence throughout my family. And so things that really I'm still trying to understand that come along with ADHD and neurodiversity and the whole spectrum of that. Certain rules work for them. And so it's a really, really different experience. That's where I think, considering an average day of a quote unquote typical parent compared to the average day of a primary caregiver is really important. 01:12:28:17 - 01:12:53:22 Erin Croyle Think about the day of a typical parent, and you got to consider the differences of ages. You know, toddlers are very different than grade schoolers. And teenagers are going to need nudged out of bed no matter what. But you know, the typical day average, right? Wake up breakfast, head out to work or school or daycare, extracurriculars, dinner. Chill out. 01:12:53:22 - 01:13:19:02 Erin Croyle You know, maybe go to bed. So the add ons for families without that extra stuff might be an annual well visit, the dentist appointment, occasional sick visits, things like that. Right? Consider an average day of a parent who's also a primary caregiver. You know you're waking up, but you've probably also been woken up throughout the night. You have to help dress and feed your children. 01:13:19:05 - 01:13:43:10 Erin Croyle You're going to have to help with hygiene and brushing teeth. Sometimes there's toileting. You're helping with medications, and then there's work, school, daycare. Maybe there's early intervention or therapies that you're either taking them to or bringing people in the house. There's extracurriculars, but a lot of times that takes extra effort and extra paperwork and extra kind of collaboration with whoever the coach or teacher, whomever is. 01:13:43:12 - 01:14:15:13 Erin Croyle Then you've got dinner and feeding the children more hygiene assistance, medications, maybe nursing level of care, bedtime routine, and then you've got other add ons there. You've got appointments with specialists and IEP meetings and paperwork and Medicaid meetings and homework assistance and behavioral support and dietary needs. Emotional regulation, nursing level care. In some cases, the interruptions we face on a daily basis are real. 01:14:15:15 - 01:14:38:08 Erin Croyle We're so used to them, but they don't happen for a lot of other parents. We don't have the same amount of hours in our day yet. We try to function and in many cases are expected to function and keep up as if we do. And let's not forget the financial hit that so many of us take as caregivers. 01:14:38:10 - 01:14:58:21 Erin Croyle Sometimes we can't work because even if our kiddos in school, it's still kind of a full time job. I mean, I think about how many calls I get about my children needing assistance at school. I've got to be ready to be interrupted multiple times a day. It doesn't happen every day, but there are flare ups throughout the school year where it might. 01:14:58:23 - 01:15:27:14 Erin Croyle So having a flexible job or taking on part time or flexible work, a lot of times our earning potential takes a hit and that puts us on a lower earning trajectory for life. Even those of us who do work, and work full time. We're either doubling up when we get home, burning the midnight oil for house stuff and other stuff, or we're spending a whole lot of money on the other things, like cleaning services and lawn care and whatnot. 01:15:27:16 - 01:16:01:24 Erin Croyle Or take away because we don't have time to cook dinner. It all adds up and it all creates these really different life experiences. Others don't realize how different our lives are. One of the biggest obstacles to self-care for caregivers are the expectations put upon us by those around us, or just ourselves. Take an inventory of your life and recognize what is doable and what's truly unrealistic. 01:16:02:01 - 01:16:32:24 Erin Croyle A really good analogy. An equation I like to think of frequently. And I want to thank the Washington Post advice columnist Carolyn Hax. I think it might have been a reader I saw this years ago in one of her columns, when I had time to read it. Happiness equals reality minus expectations. Stop expecting so much of yourself and just live in the reality you're in and recognize it. 01:16:33:01 - 01:16:58:11 Erin Croyle Another thing that really has helped me, because I am so hard on myself, is really looking at why I can't get it done. What I like to use is, if you've seen the movie or read the book, and with my own neurodivergent, it's it's hard to read a book. So I'm going to net. I've only seen the movie about a boy with Hugh Grant, which, by the way, Hugh Grant told A resurgence in my House, heretic was such a good film. 01:16:58:11 - 01:17:30:24 Erin Croyle Me and my 12 year old loved it. So seeing the evolution of Hugh Grant as an actor is has really been kind of fun. And so that's just a fun side tangent, but the movie about a boy came out, I don't, I think in maybe in the early aughts. Right. The 2000 maybe. I'm not sure. And in the film version, Hugh Grant is a wealthy bachelor living off the royalties of his dad's famous song, and he waxes on in this pretty funny sequence about how he breaks his daunting day into units and his units. 01:17:30:24 - 01:17:59:20 Erin Croyle Each unit is 30 minutes in it, he said. Taking a bath, one unit watching a TV show, one unit web based research, two units exercising, three units carefully disheveled hair at a salon, four units. And that really resonates with me because I sometimes think about when my son will refuse to go into school or refuse to get out of the car. 01:17:59:22 - 01:18:20:13 Erin Croyle It doesn't seem like it takes a lot out of my day, but sometimes that's an entire unit, or between the amount of time it takes for me to reregulate myself. It's it's 30 minutes one unit or the other day, my my daughter Maya, who's ten, forgot their, trombone, even though we have calendar reminders and I forgot it to. 01:18:20:15 - 01:18:39:12 Erin Croyle And so I walked them to school and came home and was like, oops. I got to get that right back there. Well, there goes a unit, right? Another unit. Just by getting in the car, getting the trombone, taking the school, dropping it off, saying hi, explaining what happened. Getting back in the car, getting home and re re setting myself. 01:18:39:14 - 01:19:02:22 Erin Croyle There's a whole unit gone just because someone forgot a trombone. And maybe it doesn't seem like a lot like, no big deal. It happens all the time. You got to let it go. But when we break our day into units and think about it in that way, it really sheds light on why we can't get it done. And so this will be in the show notes. 01:19:02:22 - 01:19:30:15 Erin Croyle But to just try to visualize if a unit is 30 minutes and a day is 24 hours, that's 48 units. Let's go ahead and break this down okay. Let's be generous and say that you get seven hours of sleep or attempting to sleep, like attempting to sleep. I know that we all burn the midnight oil or have kiddos that might need care throughout the night, but let's just say seven hours, which is not enough, by the way. 01:19:30:18 - 01:20:00:23 Erin Croyle Let's be real. But it's it's realistic. That's 14 units. That leaves us with 34 units. Okay. If we are going to look at personal hygiene for just ourselves in toileting, say that's one unit throughout the day. If we have enough time to actually take a shower and get dressed and maybe like, comb our hair a little bit, let's say that's another unit, meal prep, let's go a little bit skimpy there and figure 30 minutes per meal, not including snacks. 01:20:00:23 - 01:20:21:22 Erin Croyle But if you kind of tack that in, that's three units total of meal prep, right. If we're lucky enough to sit down and eat three meals in a day, hopefully that's a, you know, another three units, maybe meal cleanup if you're cooking and getting stuff ready, that is two units easily. I my gosh, it never ends right. Basic chores. 01:20:22:03 - 01:20:49:02 Erin Croyle That is average of two units a day. I would say that's 30 minute units, chores, two units an hour a day, and again, think about the average laundry, cleaning up, picking up, yard work, just basics. It adds up basic correspondence. So texting, emails, phone calls. That's about an hour a day for most of us. And that's just for typical folks. 01:20:49:04 - 01:21:15:16 Erin Croyle Now when you tack on parenting and caregiving duties, you're helping with your child's hygiene, which can range from total care to more general support. Here's the thing, though even with quote unquote typical children, this takes reminders and prodding well into their teen years. If you, disability and or neurodiversity into the mix, you might be trying visual schedules or augmentative communication or whatever. 01:21:15:18 - 01:21:42:15 Erin Croyle So hygiene support, that's easily two units toileting. Let's say that's one unit. And we all know that can be so different depending on family and age of the children and all of that, which is why I have four units for behavioral supports. This is a generic category for caregivers that encompasses so much four units is the equivalent of two hours a day, and that's the average. 01:21:42:17 - 01:22:06:15 Erin Croyle Think about things that might be tougher in your family that others would probably be clueless about. In my household, transitions are really tough for my oldest, most days, even getting him to go to activities he enjoys requires a gentle full court press filled with humor and patience. Any time I think about leaving the house with him, I build an ample extra time. 01:22:06:21 - 01:22:30:23 Erin Croyle We're talking about 30 minutes at least, not counting loading the car and taking care of all of the things those 30 minutes just to ease him into it, to get him out the door, and includes building things like a support circle full of folks who really get it, like finding a stylist who's kind and understanding and willing to adjust their schedule if Arlo just isn't having it. 01:22:31:00 - 01:22:58:15 Erin Croyle This stuff is hard, y'all. It is. Pull your hair out. Frustrating when your kiddos refuse to do things. Surrounding yourself with people who can laugh and cry with you through it, who either get it because they're in it to in their own way, or just truly know how to practice empathy. It makes all of this more doable, but it also takes time to build that which is part of the four units of behavioral support. 01:22:58:17 - 01:23:24:15 Erin Croyle Now, with my youngest assistance with homework or really any on preferred activity takes a huge effort. The challenges that come with neurodiversity are for real, and they come with their own set of unique skills that you need to develop. And in many ways, it's harder for folks to see it and realize it. Because kiddos who are neurodiverse, they present as typical, but they don't. 01:23:24:19 - 01:23:46:17 Erin Croyle They don't function that way. They need a lot of understanding and patience and time and kindness and firmness. And honestly, it's a mix I just truly don't fully get yet. And I'm working on it and it's hard now. Another example is my middle guy, who's 12, and I'm lucky enough that he still enjoys hanging out with me for the most part. 01:23:46:19 - 01:24:18:11 Erin Croyle And we love shooting the breeze about Minecraft or baseball, or just watching movies together, making sure that each of my children get the attention and affection they need in their own specific way. As much as I love doing it, it's work. It's the greatest job I've ever had, don't get me wrong. But when children have complex needs, which can range from disabilities that require anything from, again, total care to high support needs to neurodiversity, to anxiety or mental health challenges. 01:24:18:13 - 01:24:57:07 Erin Croyle It requires parents to tap into skills that many of us are not equipped with, nor do we have a community that can show us. And that's why talking about this stuff is so important. We need to be honest and real about the challenges we face. When you're supporting a child or children who are living in a world that's not designed for them, or they're functioning in spaces that are filled with people unwilling to consider or accommodate their needs, it can be a lot, and it takes a lot of time to break down those barriers and give these kids what they need. 01:24:57:09 - 01:25:26:17 Erin Croyle And when we're spending that time with our children in meaningful ways, trying to fulfill their developmental and emotional needs, other things go on the backburner, like self-care, even little things like bringing a forgotten instrument to school that can end up taking an entire extra unit when all is said and done. And for me, and I'm sure others, those small but frequent interruptions wreak havoc on my day. 01:25:26:19 - 01:26:08:11 Erin Croyle And that's partly due to my own neurodiversity. If I get sidetracked, it's really hard to get back on task and I get sidetracked all the time. So yeah, behavioral supports it is a lot. Caregiver correspondence is another thing that averages for units. Think IEP meetings and the preparation that comes with it. That includes 5 or 4 meetings, doctors, specialists, messaging on my chart, chasing down lab reports, filling out the piles of paperwork required for everything from waiver services or just participating. 01:26:08:13 - 01:26:40:09 Erin Croyle It's all that regular stuff, plus so much more, because the world's just not accustomed to helping people who have additional needs. It's the caregiver stuff. I don't know about you, but I can easily spend a full workday each week managing medical bills, insurance, paperwork, emailing people from school care team, whatever, etc. etc. etc. and then I can do it again the next week and the next week. 01:26:40:11 - 01:27:12:17 Erin Croyle It is so much. There's no time for us to even line up the support we need to free up time. The decks are stacked against us here. It's like treading water to keep from drowning, and the metaphorical life preservers thrown at us are impossible to reach because we're too busy getting through everything else. Those life preservers are just a few inches away, and just when we think we can reach it and and line up the support we need, we have to swim in the opposite direction to handle something else. 01:27:12:19 - 01:27:46:20 Erin Croyle It is relentless, and we need to understand that and honor that and recognize that. Because it's not going away. Medical needs moving on. I put one unit, but for many of us, we all know it's way more than that. And finally, two units for transportation, extracurriculars and those, you know, basic transitions. This is that soccer mom territory that easily averages an hour a day. 01:27:46:22 - 01:28:00:15 Erin Croyle Now, if you total all of these units up, it's 42 units. That's 42 units out of 48. 01:28:00:17 - 01:28:38:08 Erin Croyle That means we have six units left in a 24 hour cycle. That's three hours out of 24. That's free. That's all. And this only accounts for family and caregiver duties. This isn't really taking into account our jobs or all the other things that we're managing. And so if we're trying to be the caregiver that our children need, we only have three hours left most days. 01:28:38:10 - 01:29:04:14 Erin Croyle That's the reason we can never get it done. It's impossible. It is literally impossible to get it all done. So what are we supposed to do? Legit? Let's scoff at the idea of self-care, because we can barely get through the day. And folks, instead of seeing this, they just say, take time for ourselves. You need to take time for ourselves. 01:29:04:20 - 01:29:36:15 Erin Croyle How are we supposed to take time for ourselves when there is no time? And this is what I'm learning. My son is going to be 15 this year, so it's taken a while and I'm still learning how to practice what I preach. First off, say no. We need to start saying no. We cannot do the impossible. So let's stop pretending that we can keep up and do all of the things that our parenting peers who also aren't caregivers can do. 01:29:36:17 - 01:30:05:17 Erin Croyle Skip the PTA meeting. Don't sell the Girl Scout cookies. Don't coach the team. Say no. If it's Teacher Appreciation Week. You know what? Shoot off an email saying how important these teachers are and call it a day. Let the teachers know how much you appreciate them in your own way. That honors yourself. And that's the next thing. Honor yourself, okay? 01:30:05:19 - 01:30:32:06 Erin Croyle Acknowledge the hardships. We don't have to explain ourselves, but once in a while I think that we should. If other people have no idea what it's like to live as an unpaid caregiver to a child with high support needs, how will they ever know that we're drowning? It's a really weird place because I hate doing this and I don't want to complain about my life. 01:30:32:08 - 01:31:04:14 Erin Croyle But if we don't make it clear that we need more help and empathy and understand, other people won't know if we pretend everything is hunky dory, everyone's going to think everything's hunky dory. Think of ways that let people in while honoring and respecting your child's autonomy. So the way I like to do this is I will frequently remind folks that my child is not, and never has been a burden and never will be a burden. 01:31:04:16 - 01:31:29:11 Erin Croyle The burden are the societal constructs that make it so hard to be in spaces when you have a disability, because of the lack of accessibility and understanding. And so in part of this whole practice, what I preach thing, I have started even trying to do this more. I have always stressed that disability isn't a bad thing. It's a natural part of the human condition. 01:31:29:13 - 01:31:50:17 Erin Croyle I talk about disability openly whenever is necessary, but lately I've been realizing that maybe I need to take it to the next level. Because if I miss a meeting, maybe folks need to know it's not just because I'm mom, right? Especially as women. People are like, oh, she's a mom. So, you know, I get that it's hard being a mom. 01:31:50:19 - 01:32:21:02 Erin Croyle No, it is hard being an unpaid caregiver in a world that doesn't really give, you know, what about people with disabilities? Let's be honest. It's true. And like I said, it, accessing the services that are available is a full time job in and of itself. Even though no one needs to know why I'm going to miss a meeting if it's something outside of the realm of my job. 01:32:21:04 - 01:32:52:06 Erin Croyle So for a good example, and I don't like to talk about this often, but I serve on my local school board and it's an honor. And I love the work. But my son has been through some stuff, and there's been some really heavy medical components to his disability that have that have been devastating. And that, force me to face his mortality and I've had to deal with some heavy stuff. 01:32:52:08 - 01:33:16:12 Erin Croyle And I think a lot of us do have to deal with heavy stuff personally. And because we know that it's no one's business, we don't say anything. But explaining that. Medically complex and medically fragile people. When you care for them. 01:33:16:14 - 01:33:49:03 Erin Croyle It's hard to think of how to explain to someone what it's like to walk through this world thinking that you're going to lose your child in a few months or a few years. And I think that people can relate to that idea. And if you don't tell them that, that's something that is a tightrope that you walk from time to time as you figure out what the next medical anomaly is. 01:33:49:05 - 01:34:04:24 Erin Croyle You're walking around and your soul is being crushed simultaneously, and you're expected to function in a way that is normal and you can't. 01:34:05:01 - 01:34:31:19 Erin Croyle It's tough because you don't want to have to talk about it because of how painful it is, and because you're putting yourself out there and you're incredibly vulnerable. And in some spaces, you're carrying this weight of the world on your shoulders while also having to maintain composure, trying to figure out ways to share that, I think is important. 01:34:31:21 - 01:35:08:10 Erin Croyle Being a little more real about how challenging certain aspects of our life are, while maintaining that fine line of. Privacy. It's really hard. And it's also something that is very necessary. And I'm still dealing with how to figure that out and respect my son, but also let people know that they need to respect the fact that if I'm not fully present, it's for a darn good reason. 01:35:08:10 - 01:35:31:03 Erin Croyle Right? And I think that I think that a lot of times people see a caregiver and they just equate it to a stay at home mom or a stay at home dad or whoever, and they don't realize that we are dealing with some stuff, that it's truly unimaginable what we're carrying with us every day. And it's it's our normal. 01:35:31:05 - 01:36:04:04 Erin Croyle We live in this completely different level of anxiety that other people, I don't think can fathom. And I think we need to start figuring out how to share that, because then maybe people will have a little more space and understanding and be allies in our advocacy. Guy that just got really heavy. I, I'm going to transition here and also say that we need to also honor our self by not listening to other people. 01:36:04:06 - 01:36:36:07 Erin Croyle This means you have to recognize what self-care is for you. A good example that I have really figured out through therapy and, and, and understanding my neurodiversity, is that folks like to say to me to let it go, oh, don't worry, it's just a messy house. Or let this go. That is not possible for me. It causes actual pain for me to live in chaos, and some order is necessary for my children because of their neurodiversity. 01:36:36:12 - 01:37:06:11 Erin Croyle So self-care for me is making sure my house is clean. It is putting away my kids laundry for them because they need some order in their own rooms. It's figuring out what works for you and what works for your family unit. So think about your needs to feel physically and mentally stable even. And I think it's important to recognize what true self-care is. 01:37:06:13 - 01:37:41:20 Erin Croyle Like I mentioned earlier, it is not going to get a manicure or going get a massage. In its purest form. It's taking care of yourself. We're so busy taking care of our loved ones that will miss a mammogram or skip a well visit, but those things are essential. That stuff is self-care. So is taking a shower. So is eating something, or drinking enough water, or getting exercise, or talking to a friend. 01:37:41:22 - 01:38:10:05 Erin Croyle Those pure forms of self-care are essential. Another thing we need to do for ourselves is to just take 5 or 10 when our days are jam packed, you got to think about ways that you can fit self-care into it naturally. So I find myself doing squats while I'm in a waiting room. Or if I'm waiting at pick up, I do push ups on a bench on a playground. 01:38:10:07 - 01:38:36:20 Erin Croyle I keep nail clippers and floss in my car, along with hand sanitizer and hand wipes. Because, yo, sometimes just flossing isn't possible, but it's necessary. Just walk around the block. If you can answer an email on your phone while you're in a waiting room or wherever you can fit it in, pay your bills online. If you're in a meeting where you don't need to pay 100% attention, just get those little things done. 01:38:36:22 - 01:39:06:05 Erin Croyle Take 5 or 10 minutes to just do them. I wear workout clothes almost everywhere I go. I wear tennis shoes everywhere I go. I have to do that partially because of my son's allotment of shoes. It became a habit. But then I realized that my comfort is more important. You have to do. You make your life functional in a way that you can figure out how to fit self-care in, instead of doing everything for others. 01:39:06:07 - 01:39:29:17 Erin Croyle Yes, we don't have enough hours in the day, but what little tweaks can you make where you can pick a few minutes to do things you need? Because our physical fitness, it's not about what we look like. We know we have to take care of our loved ones. We don't get to become frail. We have to maintain our strength because we have to care for someone, and we likely will into our old age. 01:39:29:19 - 01:39:53:20 Erin Croyle What can we do so we can live long enough to support our kiddos and feel good in our bodies doing so. It's also about embracing moments of joy. This stuff is hard. Joy and happiness. It's not a constant for anybody. Those fleeting moments of joy, man, just grab on to them. When my kiddos hug me, I soak it in. 01:39:53:22 - 01:40:11:01 Erin Croyle I can't tell you how many meetings I'm late for because my kiddos want one more hug, and there's no way I'm going to say no to that. They're 14, 12, and ten. Those aren't going to have a much longer if they ask for a hug. I'm going to be five minutes late. I'm going to go get that hug. 01:40:11:03 - 01:40:37:09 Erin Croyle If they're dancing, I dance with them sometimes, man, I got to put earplugs in and dance with them because it gets loud in my house. But the joy and smiles on their faces are everything and it lifts me up. If a friend wants to go on a walk and maybe gossip or whatever, I do whatever I can to push off other stuff because I don't get much adult interaction. 01:40:37:11 - 01:41:07:00 Erin Croyle I could use some catty banter or hear about whatever TV show other people are able to watch that maybe I can start watching. We need it. We need to think about other things other than these daily struggles we're living in and indulging in brain candy. I know friends that watch Real Housewives and, as much of a news junkie as I am, I turn off the news and I find watching shows like Ted Lasso to be its own form of therapy. 01:41:07:02 - 01:41:33:18 Erin Croyle Lately, we've been watching Parks and Rec, and it's just really joyful and sometimes funny and silly, but also almost always uplifting and and hopeful. And I need that because the rest of the world doesn't feel that way. I know I said that it was important to recognize what true self-care is, but also buy the darn latte. Just get the mammogram first, right? 01:41:33:20 - 01:42:01:03 Erin Croyle If you can swing it, get a massage, get a manicure, get a pedicure. Even better, hire a cleaning service. Do whatever you can to make your life easier. Most importantly, we have to give ourselves grace. We only get one chance at this life of ours, right? If you miss a deadline or have to cancel a meeting, let it go. 01:42:01:05 - 01:42:26:11 Erin Croyle I remember early in my career I was so focused on getting ahead and climbing the ladder. I struggle with whether I should take time off. I almost missed my brother's wedding because I didn't want to miss the launch of the National Geographic Channel. My dad would always say, when you look back on life, what do you think would matter more that you had perfect attendance, or that you got to spend a weekend with your family? 01:42:26:13 - 01:42:45:19 Erin Croyle And he's right. My dad was the guy who, when I was, I was such an overachiever my whole life. Right. So in high school, I didn't want to do senior skip day. And he was like, Erin, come on. And he took me and a friend to some Amish restaurant because I grew up in Northeast Ohio and it was still is Amish country, right? 01:42:45:19 - 01:43:07:07 Erin Croyle So I was Mary Yoder's or something, literally. That was the name of the place. And I still remember that and look on that so fondly, because not only did I get a chance to go to breakfast with my dad, I got taught one of the most important life lessons. I remember spending that time with my dad and he's not here anymore. 01:43:07:09 - 01:43:36:09 Erin Croyle I don't regret missing school. Have you have you ever regretted missing a meeting right now? I might regret missing a, meeting that I had a month ago. But when we shift and look at stuff through a five year lens or even a one year lens, it's typically not meetings or work events that we regret missing. It's that band concert that my son had that I missed. 01:43:36:11 - 01:44:07:13 Erin Croyle It's spending time with people that I love that aren't here anymore, when our days are nonstop and our lives are nonstop, and those moments of making a decision of what needs to come first and what we need to prioritize, try to take a step back and use that lens of what your future self would want to see you do, and use that to guide you. 01:44:07:15 - 01:44:39:03 Erin Croyle Cokie Roberts, journalist who I interned under actually back way back in the day. Right. I was at this week with Sam Donaldson and Cokie Roberts. She said to remember that your parents are only old ones, and your children are only young once. Think about all the little things that matter. Give yourself grace. And breathe. 01:44:39:05 - 01:44:58:17 Erin Croyle Thanks for listening. Be sure to share, review, subscribe, like, follow or whatever it is you need. So you get a ping when the next episode drops. This is the Odyssey Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.  

A glass of wine or tasty cocktail at the end of a hard day is alluring for sure. But when nearly every day is hard, it might be time to rethink that drink. The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: Parenting Special Needs Magazine Simplified self-care There is limited research on the connection between caregiving and problem drinking.  There is some recognition that caregiver burden can cause anxiety, depression, social isolation, and stress which are predictors of increased alcohol use.  The slope to addiction is a slippery one. "It's 5 o'clock somewhere" loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on the slide.  I speak from experience. I remember the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I chased over and over again at countless venues - dorms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually play dates.  Information on how ADHD impacts substance use. 2023 survey of 1600 mothers by Parents found that 48% had tried to curb their drinking, one in three admitted they might be drinking too much, and 12% were worried they might have a dependency problem.    Most folks pour way more than a standard serving when imbibing.      In early 2025, the current U.S. Surgeon General Dr. Vivek Murthy urged warning labels be updated to include a heightened risk of at least seven different types of cancers including breast, throat, and colon.      According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.      WHY ALCOHOL IS SO RISKY FOR CAREGIVERS For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need - respite, support, empathy, space, to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality.  The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgement, and a whole host of other things that can make caregiving more difficult. If you are unable to recognize that alcohol use is exacerbating what ails you; a cycle is established - drinking to ease what ails you, in turn causing more ailment which leads to more drinking which can lead to problem drinking and eventually, potentially dependence. There are many self-assessment tools available online, you just need to be brutally honest with yourself when taking them.  As difficult as cutting back can be, finding help is easier than ever.      TRANSCRIPT: 01:00:06:21 - 01:00:38:09 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's, Partnership for People with Disabilities.   01:00:38:11 - 01:01:19:00 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating the tough stuff. I'm all about keeping it real, so I'm just going to come out and say. I've been recovering from surgery. So while I have some amazing interviews coming your way, this episode, I'm going to share a somewhat personal article I wrote for Parenting Special Needs Magazine about one of the hardest yet best things I've ever done for myself.   01:01:19:02 - 01:01:53:10 Erin Croyle The allure of sipping on an adult beverage at the end of a hard day is real and for good reason. A glass of wine or a stiff drink are long romanticized ways to chill and unwind. A sort of easy pass into the fast lane of relaxation. But what happens when nearly every day is hard? Kind of like the unending mental and physical labor that comes with being both a parent and a primary caregiver for your child.   01:01:53:12 - 01:02:27:08 Erin Croyle Reaching for a bottle of booze may seem like simplified self-care when your days are often both incredibly demanding. Yet super mundane. While there's virtually no research on the connection between caregiving and problem drinking, there is recognition that caregiver burden can cause anxiety, depression, social isolation and stress, which are all predictors of increased alcohol use. The slope to addiction is a slippery one.   01:02:27:10 - 01:03:14:02 Erin Croyle It's 5 o'clock somewhere, loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on that slide. I speak from experience. I remember so well the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I've chased over and over again at countless venues, dorm rooms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually playdates.   01:03:14:04 - 01:03:42:10 Erin Croyle The way our culture normalizes alcohol use made it easy for me to enjoy a glass of wine or three while making dinner for my children. That is up until I quietly quit drinking when they were ages five, three and one. Mommy, happy hours at a playground are a thing. One that I partook in, enjoyed and instigated. I felt like I deserved it.   01:03:42:12 - 01:04:12:13 Erin Croyle My oldest son has Down syndrome and has eloped since he could walk. I now know that all three of my children have ADHD and so do I. What felt like the only attainable self-care I could find at the time was actually me self-medicating with some really heavy dosing. Caregivers operate at a whole other level of intensity than peers who are simply just parents.   01:04:12:15 - 01:04:42:13 Erin Croyle When there is literally no time in the day to just be taking the edge off with a drink can be dangerously appealing. In fact, a 2023 survey of 1600 mothers by Parents magazine found that 48% had tried to curb their drinking. One in three admitted they might be drinking too much and 12% were worried they might have a dependency problem.   01:04:42:15 - 01:05:19:07 Erin Croyle Everything in moderation is not always the way sober curious movements abound these days, from theme months like dry January and sober October to expensive mocktails popping up in beverage sections at the grocery store. It's easier than ever to be a teetotaler. Staying sober, however, is a whole other story. Drinking is ingrained in our lifestyles. Mimosas at brunch, celebratory toasts at wherever.   01:05:19:09 - 01:05:49:13 Erin Croyle Honorary toasts at wherever. When I first stopped drinking, the pressure to have just one came from virtually every adult around me. Nearly a decade later, and I still rehearsed responses as to why I'm abstaining. It's just assumed that everyone old enough to drink would drink. And if they're not drinking, they're expected to explain why. As if it's anyone's business.   01:05:49:15 - 01:06:19:11 Erin Croyle The thing is, if moderation requires thought or effort, it might be time to examine your habits more closely. This idea that a glass of red wine with dinner every night is healthy is a complete fallacy on many fronts. First off, how much is in that drink of yours? A serving size of wine is five ounces. That is way smaller than most people's pores.   01:06:19:13 - 01:07:02:12 Erin Croyle The same goes for most drinks, from beer to hard booze to malt liquor. And I'll have graphs and more info on that in the show notes. Another consideration is that many people who drink too much don't realize they're drinking in excess, and they certainly don't see themselves as dependent on alcohol. Furthermore, statistics on alcohol consumption are self-reported. If we were to factor in human error and perception, most people are probably both over serving themselves while simultaneously underreporting their consumption to medical professionals.   01:07:02:14 - 01:07:38:02 Erin Croyle In fact, the CDC reports that nine out of ten excessive drinkers are not alcohol dependent. But how would they know that? What's the measurement there? If you're an excessive drinker, what makes you think that you're not dependent on alcohol? It is a very blurred line. And even if you're truly one of those people who can have a few sips and walk away, the old adage that alcohol in moderation is good for us is patently false.   01:07:38:04 - 01:08:16:20 Erin Croyle For decades, we've been led to believe that a drink or two several days a week could help in preventing heart attacks and strokes. But in early 2025, the U.S. surgeon general at the time, Dr. Vivek Murthy, urged warning labels be updated to include a heightened risk of at least seven different cancers, including breast, throat and colon. According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.   01:08:16:22 - 01:09:01:05 Erin Croyle Let me repeat that and remember what I just said earlier. We are overconsuming and underreporting. So in his report, he said even consuming just one drink per week, one five ounce glass of wine per week increases cancer risk by 10% in men and 16% in women. Why is alcohol so risky for caregivers? For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need.   01:09:01:07 - 01:09:46:09 Erin Croyle Respite, support, empathy, space to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality. Unfortunately, the solace that booze brings is temporary and toxic, often creating more problems. In addition to the long term cancer risk. The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgment, and a whole host of other things that can make caregiving more difficult.   01:09:46:11 - 01:10:25:16 Erin Croyle And of course, if you're unable to recognize that alcohol use is exacerbating what ails you, a cycle is established drinking to ease what ails you in turn causing more ailment, which leads to more drinking, which can lead to problem drinking and eventually potentially dependence. So what's a caregiver to do? Given what we know about the dangers of alcohol use and the demands placed on lifelong caregivers, we owe it to ourselves and to our loved ones to take a closer look at our consumption.   01:10:25:18 - 01:11:01:18 Erin Croyle There are many self-assessment tools available online, and I'll put a few in the show notes. You just need to be brutally honest with yourself when you take them. Most importantly, know that there is absolutely no shame in needing help. Alcohol is an addictive drug. Building tolerance and dependence is more common than we know because it's pretty much the only drug out there that is not only socially acceptable to use, but encouraged to use virtually everywhere we go.   01:11:01:20 - 01:11:30:23 Erin Croyle That whole rock bottom, sloppy alcoholic image is just a caricature ized version of what problem drinking is. More realistic versions of problem drinkers are all around us. It could be you. It was me drinking alone. Drinking early in the day, thinking you should come back or moderate. These are all indications that it might be time to stop. As difficult as cutting back can be.   01:11:31:02 - 01:12:13:07 Erin Croyle Finding help is easier than ever. Almost every kind of support out there is available in multiple formats. In-person person online apps on your phone. Anything from Alcoholics Anonymous to mindfulness to sober blogs, to sober challenges to therapies, to groups, to coaching, to books. Something is bound to resonate and help you figure out what works for you. And what I can tell you from personal experience is once you pull yourself out and you stop when you wake up in the morning, it feels amazing.   01:12:13:09 - 01:12:34:18 Erin Croyle And every day that you wake up that you didn't drink the night before, it just feels more and more free and more and more awake and alive. And you just wonder why you didn't do it sooner.   01:12:34:20 - 01:12:58:22 Erin Croyle Thank you, listeners, for joining us. Check out the show notes for those self-assessment tools for statistics info, How to find help and feel free to reach out to me about any questions you might have. I'm an open book and be sure to share a review. Subscribe like follow. Or whatever it is you need so you get a ping when our next show drops.   01:12:58:24 - 01:13:06:21 Erin Croyle This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.      

When a child is sick or missing developmental milestones, we immediatly start searching for answers as to why. But what happens when test after test just leads to more questions?  Rare diseases are more common than we realize; research surrounding them is what's lacking.  We're shedding light on what so many people go through by sharing the story of one family's diagnostic odyssey.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: The Center for Family Involvement offers specialized one to one support specific to rare diseases through our Genetic Navigator program.  Learn more about rare diseases and Rare Disease Day. Smith-Kingsmore Syndrome Foundation       TRANSCRIPT:  Welcome to The Odyssey: Parenting. Caregiving. Disability.  I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. It's a seismic shift I experienced myself, when my first child was born with Down syndrome in 2010.  Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast explores the triumphs and the hardships we face.  One of the hardest things families go through is the diagnosis itself.  There are an estimated 300 million people with rare diseases worldwide. A disease is considered RARE when it affects fewer than 1 in 2,000 people.  Lack of scientific knowledge often leads to delayed diagnoses and inadequate treatment and care. All of this places a heavy social and financial burden on patients, and in turn their caregivers.    To highlight these issues and in honor of Rare Disease Day this February 28th, I dug deep into The Odyssey vault to revisit my   interview with Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the President of the Smith-Kingsmore Syndrome Foundation. Her now 13-year-old son Charlie is one of less than 300 people living with SKS. The story of their diagnostic odyssey is just one example of what so many families go through.   So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey? Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up. He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician. Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician? Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent. And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go? Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing. Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list. That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs. Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off. All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing is something that families should be consented to. Um, it shouldn't, you know, some people don't wanna go that route and that's, you know, totally their choice. You know, I, as a, um, a nurse at this point, I was, um, I was still a nurse. I was in grad school getting, um, my master's, um, and I, um, really wanted to find out all the reasons why like I needed, I needed to know the answers. So we did go the route of the geneticists and we had our first appointment about four months later. Charlie had a microarray done, a chromosomal microarray. And the first, um, test that result we got back from the chromosomal microarray showed that Charlie had a micro deletion of a gene called a U T S two or OTs two. Um, and that gene was, was recently, uh, discovered and there wasn't a lot written about it, but over the course of a couple of months, paper started popping up. And as I'm reading, um, about this, um, genetic syndrome, I'm finding that almost all of the cases RF kids with small heads or microcephaly and Charlie had macrocephaly or a large head knowing that that's kind of a major difference in development. I wanted to question, I questioned like, maybe this isn't the right diagnosis. So I did some research and I reached out to some of the, um, doctors and researchers that have written articles on OS two. I shared with them Charlie's genetic diagnosis, um, sheet from MyChart from, um, from our hospital. And, um, you know, waited. I emailed and waited to see if I'd get any responses. And sure enough I had two, um, experts and s to respond back to me. And they said that they would recommend Charlie getting whole exome sequencing, that they did not feel that, um, s two really fit Charlie, um, and that we should continue to seek out a different diagnosis. Um, meanwhile, I, um, with another, um, parent, I'd started a Facebook group frauds too, because there was nothing out there. And again, I wanted to connect with people. Um, I had a lot of friends, uh, a couple of friends, not a lot of, couple of friends that had kids with Down syndrome and I had attended some of their, um, community events and the, like, it was just amazing to me to see this community come together. Um, and, you know, we always, we wanted to participate because of that feeling, but like, I still, you know, that wasn't Charlie's diagnosis. So finding our people was really important to me. Um, and so we started this group, um, and, uh, that group has really grown and since, um, over the years I've kind of transferred the, um, leadership onto other families. Um, and we continued our, our, um, diagnostic odyssey to try to find, uh, the right diagnosis to fit Charlie. At the time, whole exm sequencing was not being offered. It was like in the beginning research stage, there were places across the country that were starting to do it. And you know, as I'm trying to figure out can we get this done, I'm hearing back from our team at UVA that they're not offering it yet, and then they're only offering it if insurance is covering it. And at that time, our insurance was not covering it. So again, I went out on to social media to try to see what I could do and just reaching out to other parents across the country on what their experience has been. And I found out that, um, the lab, gene Dx was running these tests for, um, not free, but they were, um, at least trying to bill your insurance and then they were rebilling, um, and kind of running, like doing the fight for you so you didn't have to do all of that. And when it came down to it, by the time we finally got it done, our insurance, um, and Gene DX ended up covering it. So we didn't have any out-of-pocket at the time. It was a $28,000 test. Um, it's, it's much more affordable now, but it's still, it's not, um, free, um, to everybody. And, uh, and so, you know, accessibility, um, was a big issue for us and it took over a year and a half to get the right testing done for Charlie. But then we got the whole XM sequencing and it came back normal. And so of course I was a little bit disappointed, you know, we went through all of this and we get this test that's normal. But when I say normal, what it had was a, uh, variant on the gene mTOR that was unknown, unknown significance. So what I was told is it's normal. You're gonna, there's always gonna be a gene of unknown significance with a variant that happens on everybody if normal. Okay. I ended up reaching out to, um, the same doctors that I had talked to, um, previously about OTs two syndrome, just to kind of pick their brain on everything. And at the exact same time that this was going on in the background, another Dr. Lori Smith, discovered a child who had a variant on mTOR, and she actually published a paper on it. Her and her colleague Dr. Kingsmore, they described in the literature a mutation of the gene mTOR that, um, caused some symptoms that were so similar to Charlie as this information is all kind of coming together. Our geneticists at the time reached out and said, Hey, we're gonna ask the lab to rerun it, rerun your test. Which when Gene DX reruns your, your whole exome sequencing, they don't actually need another blood sample. They can just rerun it against their database. And when they rerun it against their database, we again got back variant of unknown significance. All right? So we've now had it done twice. There's this variant of unknown significance. There's this paper that's been written about Smith Kingsmore syndrome, we yet to find anything out about this. And I thought, okay, I, I kind of had closed the book. I was like, all right, Charlie's just unique. He's rare. I, I'm not sure what we're gonna do, but I'm just gonna move forward with what he needs, which is the therapies to help him meet the milestones that he's, that he's able to achieve. And to just get past that point of grieving the like why and what, and move forward with, okay, we have to have action to make things better. Um, so we kind of threw ourselves into therapy. We were already doing a bunch of therapy and just rolled with what, what we needed to do to, to really help Charlie be the best that he could be. I'm gonna have you pause there because you mentioned the grieving, right? And you know so much here about all the things and, and so many families like ours, like, we have to go into this mode where it's research and advocacy and research and advocacy and fighting for this and insurance and paperwork, and it's a full-time job. So I wanna pause and I wanna know at this point, you know, you are going through all of these things and so how are you at this time and how is Charlie at this time? I mean, at this point where you are in the story, can you tell us how long the journey's been and how you're holding up? And I wanna know about motherhood in these conditions because I know for me, having my oldest have a disability and having two younger siblings, we are robbed of so many experiences being parents that it, it just sometimes feels unfair and there are a lot of emotions that I feel like we brush off. So I wanna know where you were at this time emotionally and where your family was and how you all got through this while you were doing all these things on top of being a mother, on top of being a professional. How were you? Um, well, you know, it was, it was a difficult time for me for sure, and I was in therapy. Um, I, that was one of the things that I did for myself to kind of work through that grieving process of, um, you know, grieving what, um, what I expected out of the pregnancy, what I expected out of my newborn, a period. And that, that really helped me. And I, I worked through, um, with my therapist, I worked through, um, that grieving process. Um, and, you know, I just started trying to take better care of myself and also taking, you know, really kind of putting myself, really putting everything I can into helping Charlie. And by doing that, I, that actually ended up kind of being like therapy for me because I, I was able to put aside the, we can't figure out the why, but I actually can do something to, to help. So this was about 2015 was when we had the second whole exm sequencing result come back as variant of unknown significance. Charlie was four, almost five years old, he was in school. We were seeking out, trying to find a diagnosis, a school diagnosis for him where he could get the services that he needed. So we went back to the developmental pediatrician with some of the concerns that his teacher and I had, I really was seeking, you know, is, is seeking out, is this autism, is Charlie, is he autistic? And, you know, our first, um, visit, our doctors weren't too sure, but after about a year, you know, his, his signs of autism really did start to show. And so he was diagnosed with autism and that really helped us be able to work with a specific i e p team at, at his school and get him the services that he needed to. Um, but you're right, Erin, it, it was like a full-time job and you know, they're doing that on top of working full-time. At this point I had graduated, I was a nurse working as a nurse practitioner, really managing my child's day-to-day life. And this therapy's on top of that. There was a time period, o o over about two and a half years was when Charlie was getting 20 hours of therapy on top of school. So outside of his school hours, 20 hours a week of therapy. You Serious? Yes. So we, How, how did you even fit that? Cuz I thought a few days of week were a lot like how did you fit that into your lives? So every day he had speech, P t O t music therapy. He did the hippo, uh, therapy, horseback riding. And then on top of that we had a b a. And so our a b a therapist was here, you know, for hours in the afternoon and evening. And it really, um, for us, ABA was the right choice then. It, it's not the right choice for every family. And you know, I totally respect that. But it worked. We had a really wonderful, um, ABA specialist and it, she connected us and with Charlie and really helped me as a parent manage some of his, his behavioral challenges in the home, um, so that I could be a better parent to him. Uh, I got just as much out of it as he did so did, so did my husband. It was really, um, a wonderful experience for us. So yeah, I mean that was kind of where we were at. We were like, all right, well we have to just really try to help Charlie be the best that he can be. Um, and Charlie was such a trooper and he, like, he really worked really hard in therapy. But, you know, my mama heart was still very sad because we, he, he mis he ended up trading out play dates for therapy dates and, you know, over time not having those play dates , I realize that now, like he, you know, he doesn't have the, the same play skills and is that because we ended up having to do all this therapy? You know, I try not to blame myself because I do think we've done the best that we can do given the circumstances, but you know, it's really hard as a parent to, to not second guess like, did we do too much? Did we not give him like the normal things that he could do? And so, you know, he, I I still feel like we did the best we can, but it was, it's been a journey that's for sure. And wouldn't you say, I mean, in my experience, because it wasn't 20 hours of therapy a week, but I did find myself with my son taking his sibling to go to Aqua therapy and to go to all these speech therapy and I, I just, I mean I found myself getting angry, but then I also think about societal constructs and the medical constructs where really these therapies, and that's the beauty of early intervention, should be coming to the playgrounds, to the cafes. Um, so the therapists can work with our children in these settings that are natural instead of a clinic or even in the home all the time. Um, and helping facilitate some of the conversations and playing I, which I mean, again, our societal constructs in our insurance system does not really allow for that. Cuz you have to fit so many people into a day in order to get paid. But I just feel like it's, it's not a failing on us as parents. It is a failing on the way that our system is set up and our poor kids. There's this complex that they have to be fixed and um, I, I don't know, I just find it really difficult that in, in this day and age we haven't found a way to make it easier for them to get what they need but also be a child. I totally agree with you on that. We had a physical therapist, um, Charlie's long-term physical therapist in through early intervention and we stayed with her private um, until he was eight and a half. She would take him to the park. She, we would go to the park and she would try to, you know, if a child would come over she would definitely try to do that. But that was far and few between like that just didn't happen very often. Sarah we're going all over the place here. So let's go back to the testing and where you were with Charlie. I think you said it was 2015? Yes. So you know, like I said, we had kind of moved on from the why and what, and we're just focusing on what we could do to help. Um, and we were sticking with our appointments, you know, our yearly genetic geneticist appointment, our yearly developmental pediatrician appointment. And we just happened to be super lucky that it's very interesting story. But one of the specialists that I had reached out to for OS too emailed me instead of the UVA a geneticist about her paper that she was writing on OS two. And so I forwarded it to our U V A geneticist at the time and she said, let's, um, you know what, it's been a while. Let's see if Gene DX will re-look at Charlie's whole exome sequencing. And this was 2018 and a couple months went by, I didn't hear anything and then I get a phone call, the uh, genetic counselor said, Charlie's whole exome sequencing test has been changed to, from a variant of unknown significance to a variant of causing pathological disease. He sent me the report and there was reference to Smith Kingsmore syndrome, which I had at that point. I had already read the article that had been published, um, which it was, you know, only published a couple years prior and it kind of matched Charlie, but still there were some differences. So, you know, I was hesitant to like fully accept the diagnosis and wanted to continue to reach out and see what we could do. So, um, like I had to do from the beginning, I continued to reach out to these specialists that I had met and I mean I was lucky cuz I know that families have emailed specialists before and that they don't respond because they're so busy. I get it. They have their own patient population or the emails just don't get through to them because in, you know, big hospital institutions, it's hard sometimes to reach them. And I think we just got really lucky. And again, this doctor that we were, um, that had been corresponding with in Seattle, she said, yes, this Charlie does fit that and there's a lot of new information coming out about uropathies, which S K S Smith Kingsmore syndrome is an M enteropathy. So, you know, I think you're in the right, What is an M … what is that? And then no, it's ok. And actually I you know, I think it would help if you told us some of, uh, the symptoms as well. Um, Sure. So, um, Charlie has a variant on the gene mTOR. So the gene mTOR is on a pathway that helps our cells and our body communicate if there's a variant, it can cause the cells to change and grow differently, sometimes rapidly. Um, and so because of that, it can cause different symptoms like large head size, large brain size seizures, um, global developmental delay, autism intellectual delay, and there's some other like hypotonia, focal cortical dysplasia. And it can cause some pretty significant changes in your M R I. And I haven't mentioned this to this point, but Charlie had had an M r I already, so we had some information about his, um, brain abnormalities that looking at it at that early prior to having the diagnosis of sks, we were told, well, there's no genetic picture that matches this yet. And that's the thing about genetics is we got told a lot of it hasn't caught up with you yet. Like there may be something later on, you know, and I think there's a lot of families that kind of sit in that window of waiting to, for the diagnosis to be discovered are like, people are hesitant to say it's this one person has this thing. Like they wanna see that there are multiple people having the same symptoms with this genetic variant. So we, we had our diagnosis, I had a doctor that confirmed it, and then I went back to social media trying to find people that I could connect to and I did. And um, I found a Facebook group. There was like 30 people on it and I started reading and I started sobbing. I mean that was like the, the pivotal point for us. It was like these were our people, these, these families are going through the exact same thing we're going through. Um, our, the pictures, I was like blown away. Like my son looks like these kids, like they could be siblings, um, even with different hair color, they had so many similarities and um, you know, it just like, I was happy and sad and had so many emotions. Um, but then the balls just kept rolling. Like people were motivated. We found that there were doctors that were motivated and we were able to connect with these specialists that, um, were outside of our state. And luckily we were able to travel and, and meet these doctors and other families who really wanted to start a, uh, foundation so that we can raise awareness of our small rare disease. Because living the life of, of trying to get a diagnosis for an ultra rare disease is such a long, painful journey. And if we can help others get that diagnosis earlier, then we're cutting years off of the, of that pain for them. And now we know there are babies that are getting diagnosed because there's more literature about s K s. I like to think that our foundation has had a part to do with that because we've been pushing to put information out there about Smith-Kingsmore syndrome. It, it feels like, had there been more early on with Charlie, like with the larger head size in and of itself and what you saw, had that been associated then, do you, I mean, little things like that could have cut that journey for you down so much? No, Absolutely. And I think, I think now in, in 2023, um, it is because we, we know like genetics has already advanced so much in just this short period of time that there are gene panels that have like seizure and large head and they're looking at, you know, specific diagnoses that match that. So if you present, if your child presents with a specific list of symptoms, then instead of having to get this whole exome sequencing approved, they can do just a specific panel which is cost efficient and helps really kind of hone in on the diagnosis. So I think we are getting to the point where it's getting faster, but there are so many of us that it took so long to get there. And there's still, I know there's still people out there that are living this journey where heir child's diagnosis has not been discovered yet. There are lots of families that are on this undiagnosed journey and hopefully as more time goes on, you know, they'll be less and less. But I think we're gonna be sitting in a, in a time period where genetics is gonna rapidly change. I mean, yeah, I wrote this article and we'll put a link in our, in our stuff for y'all that are listening, um, interviewing you and some doctors and, and I mean it is, it's changing rapidly and it's advancing rapidly, but it's still, you know, for families that are in it, it feels like a snail's pace. And I can't help but think, you know, there's so much more information now. But what about those families who don't have the privilege that you and I have who are working two jobs who English is not their first language, you know, who are single parents and just don't have the health insurance or the time or the resources to do the research. Is there anything for them? Like is there support for them and, and how do we do better getting this information out to those who, who don't even know where to start looking? You know, Erin, these are such great questions and I know that there's some work, um, that the, that your center's working on that V C U is working on that are hopefully gonna be helping lots of families in Virginia. I think, you know, social media, I mean, is is definitely a way to help families connect, but we're still kind of missing out on, on ways to really reach these families that wouldn't even go to the doctor to begin with, to, to kind of get the ball rolling and, you know, I think reaching out to or have like having our, our pediatricians be able to have a way to get these families to connect to other families. You know, whether like, especially like not even thinking of a specific diagnosis, but like if our, if our pediatricians are concerned that there may be abnormal or development of a, a child, like connecting them to another family so that they have support, um, because those of us that have been through it, like we wanna support other people, being able to do that in some way, shape or form, I think would be, uh, amazing. But right now, um, I'm not really sure of all the ways that that, I mean, I don't think there's a lot, that lot going on besides the work that you guys are, are getting ready to start, which I think is gonna be incredible for Virginia. Well, yeah, so the Center for Family Involvement, not only do we have a family navigator program that helps families, um, we match families with similar conditions. So if you have a family who has someone with Down syndrome, a child with Down syndrome, we find a parent through our volunteer program to match who you can talk to. But the beauty of it is we have so many different rare conditions, right? But also cultural differences. And we, we take great effort to find people to find their people, not just with whatever disorder they may be dealing with, but whatever cultural sensitivities that go along with it. And then yes, we have just launched, um, a genetic navigator program, um, which does something similar but with these specific questions about genetics. But, you know, it, it is, it is one of those things where we're there we have help and uh, it's, it's that not everyone knows where to look. And I think the beautiful thing, you know, we're talking about S K S and we're talking about the Center for Family Involvement, and we can talk about autism and Down syndrome, but I always stress to people that we don't silo ourselves because disability is, is still just such a small minority when you look at our country and our world, right? And developmental and intellectual disabilities are even smaller. And then when you look at rare diseases, according to the National Human Genome Research Institute, there are around 350 million people on earth with rare disorders. So this is a disorder or condition with fewer than 200,000 people diagnosed. And about 80% of these rare disorders are genetic in origin, and 95% of them don't even have a single treatment authorized and approved by the F D A, right? So when we're talking about these things that we're dealing with, it's great to find our people. And I do like, you know, like I'm sure with S K S, you, you have this, these niches to talk about. And whenever I meet a parent of someone with Down syndrome or a person with Down syndrome, there are certain things we just know about because it's so common within the condition. But when we talk about the bigger movement in helping families and, and helping understand rare disorders, uh, I mean it's, I I I cannot stress how important it's that we work together. That's why I love having this conversation with you and learning so much more. Yes, I think it's so important that we are supporting each other, um, regardless of what the, our child's diagnosis is because we're going to experience the same challenges, access to medical care, access to specialists, how to write that I E P for certain challenges that your child is going through, how to navigate the transition time period when your child, um, is becoming an adult. So there's so many challenges that we're going to experience that have really nothing to do with our specific diagnosis, but do have to do with those larger symptoms that our, our children's share. And so together, you know, we can really kind of make a bigger impact, not only with our own children, but with helping others. I really think it's important to give back to those that are starting off the journey, not just how to find the diagnosis, but how to access things in their community that can help their, their child, help their family to be able to, you know, have just a more quality, better quality of life. Absolutely. And you know, something you said earlier really struck me because it's so common with so many families, is that you have to have a diagnosis to, you know, for your I E P, which is just, it's such a ridiculous thing that schools put upon families. A developmental delay is a developmental delay. We don't need to categorize it into a certain diagnosis or ID or DED or whatever, ed. I mean, it's, it's categorizing and labeling is doing such a disservice if we could just treat the student and not worry about, uh, uh, it just, uh, it's baffling individualized education plan. Look at the individual, the diagnosis should have nothing to do with it. Well, Erin, I think we could have a whole other podcast about IEPs, , I think you're right. And the challenges that we face in, in, in Virginia and probably in every state, but yes, I I we have been fighting that battle and it's, it is very true. Like the labels do not really define our children. Putting the resources together to help each child meet their milestones and be able to access their curriculum and access their surroundings and be a child is what really the focus should be on. Hmm, Absolutely. And you're right. I, I could dive into this and that is a whole wormhole that I'm gonna keep closed because we need to, uh, we need to do an entire podcast on that. Sarah's the, the thing that I see in my family and, and some of the struggles I see have nothing to do with my son with a disability. It just has to do with everything that goes along with it. Like we've been talking and my son has, or so my son, I have three children and, and Arlo, my oldest has two younger siblings. And I see how all of the things that I have to do to support him, impact them, and they roll with it so easily because it's just part of their life. But sometimes they do feel it. And I think you kind of have the opposite, right? You have two older children. I mean, how has that journey been for them? Like, how has it been difficult? Are they understanding, are they supportive? What's that been like as a whole family? I mean it's, you know, when you have a, a child that is, that has struggles with either developmental delay or intellectual impairment, autism, any, any diagnosis like that, it's a family affair no matter what. Right? So I think having a younger child when therapy started, um, you know, he was an early intervention. So we, I did everything during the day while my kids were at school. But then as he aged out of early intervention and went into the public school system, everything became after school. And so it was very taxing on everybody. We had to divide and conquer often, um, where one parent is taking one child to do their extracurriculars and the other parent is doing the therapies. And I had three kids. So my middle son Brady often went with me and Charlie to do the therapies. So he has really kind of been living the life of, um, of that, um, right next to Charlie, like the longest where my oldest older son was, is five and a half years older. So he kind of already was, you know, on the path of what sports he was into. And, and so we, we, you know, divided and conquered. We luckily, um, had grandparents that live in the area, so they also were able to help. But there were times where we had no help and it was just us. And that becomes a true family affair. I definitely recommend looking to your therapy centers, to your pediatricians to find sibling classes. You know, we did those over the years. Both of my kids participated and they were always really helpful. Empathy is is something that comes from within, but also sometimes kids need to be taught a little bit about empathy and going to those classes, I found that my kids came back like refreshed and more, had more of an understanding and also making sure that they had time for themselves too. And even if that was, once I put Charlie to bed, I did movie night with just my older two, cuz that was all we could manage to, to pull off. I make sure that we have time for each child, but that's, it's an exhausting task as a parent to, to do that. You know, I definitely feel for, for all parents that are going through that, It's really hard. I find myself struggling and realizing that I need to like find someone to be with my oldest who's 12, who should be able to stay home alone so I can spend time with the other two. Sometimes he, my oldest just will not do something. And it, it really, like, you can be out like exploring a town and looking at shops and he'll just refuse and wanna go home and there is literally no stopping him. And so, as hard as it is to like, not have him included, sometimes it's the best thing to do for the other two to experience things that they wanna do. And it's just, it's such an inner conflict dealing with this all the time. And especially when, like, we don't have family nearest, we have no supports. Every support we have is hired or asking a friend to do a favor that I might not be able to return. So I don't wanna ask them. Yes, I to I totally understand that. And it's, it, you know, anything that we do in this house after seven o'clock is not with Charlie because that is the, that's the bedtime for him. And if we vary from that bedtime, then we do not have the best version of Charlie. And, and no, it's not fun for anybody. Um, so Erin, we, that happens to us a lot also, and there's a lot of inner conflict as a parent because you, you know, and I, I try not to, um, look at other families who are experiencing those things as a whole and rec and, and then, you know, you realize that you're not able to do that as a whole. Um, because I don't wanna put myself back in that cycle of grief, but it's very easy to, to be able to compare. It really is. And I love that you said that, Sarah. I love that. You know, you just don't compare because it, it can be hard, especially like hanging out with my brothers and their kids, and it's just seeing how different their life is just by some chromosomes, you know, it's, it's really interesting. But yes, the but there are things that they'll never get to experience. There's joys and struggles that are so unique that they'll never know. And I guess that's the beauty of finding your people, right? Because you can share with them. And I wanted to ask you too before we run out of time, because I think what is unique about a lot of groups that we find, and what I heard when I spoke with someone that works with your organization is how much the doctors learn from parents like us because we are so busy researching because we have to, because there is no research out there on some of the conditions that people face. So as parents, we are as much a part of the medical teams in many cases as, as the doctors. I mean, has that been your experience? 100%. First of all, my advice to other families are if you are not being treated at that level with the, the team that you're working with, seek another team. Especially when you're on the journey to a diagnosis, you need to be heard and you need to be respected. And you know, people are human. You're not always gonna have that path. So if you're not finding that path, I recommend trying to seek another team, seek another specialist if you can, because you definitely need to be heard and respected in order to help your child get to that diagnosis. I, I mean, I've l I've learned from so many of medical professionals over the years, not just about Charlie's diagnosis, but others. And many times the ones that are, that stick out to me are the ones that always say, I learned from the families. The families are teaching me along the way. Um, you want that partnership, that partnership is so important. You want to feel that they really do understand and and want to help you. Yeah. It's, it's amazing to me the relationships that you form with doctors and nurses and other professionals because of this. And I, I had to like, I was someone who never needed to see a doctor and then all of a sudden my first child stopped moving and emergency c-section and, and like my whole world flipped upside down. Right? And now I'm like talking to doctors all the time and I've learned so much. They're not like on this pedestal that we put them on. And one of the most important things I think, that I learned from one of my son's specialists is that it's a lot of guesswork and you don't realize that like they're just throwing things against the wall hoping it helps. My son has immunology stuff going on that's so complex and not understood that it's not even an official name for it. Right. And one of the doctors I worked with, I was like, can I read something? I wanna understand what these blood levels mean. He's like, there's no research to read on this. No one's been able to even see this before. This is first. So yeah, if you have a doctor that's dismissing something you're saying and doesn't wanna listen and, and doesn't take your concerns seriously, find a new one. Absolutely. But easier said than done, especially if you have insurance that dictates exactly who you're supposed to go to or, um, you have language barriers so you don't even understand how to get, get to the, the other, um, specialists that could possibly see your child or see you. It's definitely part of the journey and it's hard, but I think that's where family supports groups can come into play. Or you know, what the Genetic Navigator program where you have, you know, if somebody is let, if somebody tells me in the beginning their journey that they're struggling, even with like early intervention therapists, I always say, if it's not a good fit for you, then it's not gonna be a good fit for your child. Like, you gotta make sure that you feel good about it because you want to learn from them and you want them to help your child. So I always try to give that advice to families when I'm paired up with, with somebody who's starting a, a new journey like this. I think that's why it's so important to find a group to get your ideas and push them off on somebody else. So whether it's the Center for Family Involvement or like you said, you could, I mean, our communities, our individual communities are so accepting. If you have something going on and you don't know what it is, you will be welcomed. People will bend over backwards to help answer your questions. I've found that over and over again. They just wanna help because they know how hard it is. It's just reaching out. Yeah, absolutely. Together we're stronger. Right? Together we're stronger. That is so spot on and the perfect way to end this. But before we do, Sarah, is there anything that you'd like to add? No, I think, you know, this is, this is a really important topic, uh, to put out there so that people know, um, how to get started, um, what somebody else has gone through and, um, what to do when you're on this journey. So I really appreciate all that you're doing to kind of highlight and raise awareness to, um, you know, walking this diagnostic odyssey to getting a genetic diagnosis, especially of rare diseases. Well, thank you for your work in helping people find out, I mean, patient registries and working with specialists and having medical professionals be a part of your organization. I mean, this is just, this is just so important and, and it's so inspiring, um, your work. Thank you. Well, thank you very much. It's, you know, it's really important to me that, you know, we raise awareness not just for s k s but for, um, for rare disease in general and for anybody being going through this journey so that we can kind of help them and shed some light on what we've gone through. Excellent. Thank you Sarah. And thank you, listeners, for joining us. Check out our show notes for more information on SKS, rare diseases and the genetic navigator support we offer at the Center for Family Involvement.  And be sure to share, review, subscribe, like, follow, or whatever it is you need so you get a ping when it drops.  This is The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.     

How many times have you told yourself, "once I get through this week, it'll be smooth sailing;" only to end up in that same spot the following week, and the week after that, and after that? It's gotta stop! There will aways be work, family obligations, appointments, meetings, paperwork, laundry, and countless other pressing things to do. It's not going away.  If you want something to change, it's gotta come from within. Maybe this new year, it's time for a new attitude! The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: There are very few studies on how women tolerate pain. This 2022 study explains that women were excluded from studies because of assumptions that potential hormonal changes could impact reliability in pain ratings. Yet new research shows those assumptions are false.  While there is evidence that period pain is comprable to the pain of a heart attack; renowned gynecologist Dr. Jen Gunter warns that waiting for excrutiating chest pain to tell you you're having a heart attack is dangerous, especially for women who often report having no pain with their heart attacks.   Research continues to show the importance of limiting screen time for children.    TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring all while tackling the tough stuff, too. The thing is, parenting is tough. Caregiving is tough. Middle age. It's brutal. So many of us live in the. I just need to get through this week mentality and that is bunk. If we think that way, we're going to be white knuckling it through life until we die. There's always going to be something. So rather than waiting for the tide to turn or the pendulum to swing, it's time for an attitude adjustment. I'm going to get deeply personal here because I know the impact it can have. A good example of this is my first child's birth story. Arlo's movement was slowing in the final weeks, and folks around me dismissed my concerns, telling me that it was natural to happen because as the baby grows, there's less room for them to move. But at 39 weeks, Arlo's movements were barely noticeable, and when he did move, it felt weak. So I went to the hospital and was immediately prepped for an emergency C-section. My doctor later told me if I hadn't come in, Arlo would not be here. A few years later, I was catching up with a dear friend who thanked me for being so open about all those scary details. She told me that because of me sharing my story, she didn't second guess herself when her first child's movement slowed in utero. She and her son are alive and well because they got the help they needed. Now, fast forward to modern times, and I have a new story to share that hopefully will help. Just after Thanksgiving, I noticed a red swollen mark on my calf and it was a little bit sore. But it's common for ADHD errors to get random bumps and bruises and not remember how it happened. So I looked at it and I chalked it up to me overreacting and just powered through. I mean, after all, my son Arlo had a point with his hematologist, which is a four hour round trip away. And that was, I think, the following day. My middle guy, Emil, had a well visit and a band concert that week, and he had his own ADHD evaluations throughout the month of December. And my daughter had an appointment with their pediatrician that week, which resulted in a referral to a behavior as the following week to help with ADHD strategies. And I knew if I pushed any of these off, it would be problematic later because like most moms, kids come first and like those hard weeks that stack up on hard weeks, I wanted to just get through that week, so maybe the next week would be easier. Now, let's not forget, December is magic, making time for many parents. And not only am I the primary caregiver in my home, I'm the primary magic maker, too. It was a lot. And I'm even leaving out some of the hardest stuff because this is really not my space to share everything. So my body was buzzing with anxiety. I could feel it. I would have to really focus on breathing. I just just felt just a mess inside. So the month went by, and suddenly Friday, December 20th, arrived and I felt relief. I didn't have any work deadlines. It was the last day of school for my kiddos before their winter break. Finally, I could just take it easy, maybe do some last minute holiday stuff and get ready to just be festive. That morning when I was getting dressed, I looked down at my calf and instead of seeing that red bump, which I pretty much forgot about, I saw a faint reddish brownish line and that freaked me the food out. It freaked my partner out. It freaked the folks at Urgent Care out. And they sent me to the E.R. where I sat for hours, eventually crying because I needed to leave to pick up my kids from school. And long story short, I was walking around with a large blood clot in my leg for a month. I was shook. What's wild to me is that I didn't even notice the pain in my leg until I was asked about the pain level. I'm a 47 year old perimenopausal woman. I hurt everywhere and no one seems to care. So either I buried those feelings in my leg or I massed them. Whatever it was I didn't allow myself to feel pain until I was told that the pain in my leg was normal. I was pushing every feeling and instinct for my own well-being aside for a month to attend to everyone else's needs. And I think it's important to acknowledge that and recognize that we have the ability to do that to the point of unintentional self-harm. And it's not all that uncommon, especially for women. I mean, did you know that menstrual cramps can be as painful as a heart attack? I'll put the actual medical research in the show notes. This is not an exaggeration. A man clutching his chest and falling to the ground is what we often kind of envision when we think of a heart attack. And that's the kind of pain that many women work through every single month. And I mean work through. They go to work. They do their duties. Maybe they do a hot pad and take some pain meds, but they're functioning in a high level of pain. Think about that. There is very little scientific evidence about the differences between how males and females experience pain because women have been excluded from countless studies, including those surrounding pain. And there's more about that in the show Notes, too. All of this brings me to the attitude adjustment that this medical scare triggered as Peter Finch's character, Howard Beale, declared in the 1976 Film Network. I'm mad as hell and I'm not going to take this anymore. The shifts been brewing for a while. My day in the emergency department just set it in motion. When asked to describe the pain, I said what I said earlier in this episode, I heard all over. So it's hard to tell. And I repeated it whenever they asked. I would mention that if childbirth is a ten and this is a seven, what does that even mean when we're looking at your pain scale? All of this literal pain and on top of it is the mental load of being a parent and a caregiver. Being the captain of a ship that never stops is unnatural. And that's why I'm starting this year out focusing on removing every pain point possible. What's a pain point in this case? It's those everyday struggles that just drain you with all the stuff out of control. I'm looking for the things in my life that I can change both the immediate and the long term. These pain points can range from something as simple as buying glass bottles with lids. Right? Because I don't know about you, but no one in my family seems to understand how to properly cover food and put it in the fridge. And so I'm throwing away wilted lettuce and dried poultry cheese that's rock hard. So the results are spotty with those lids. So far. But it's early and I'm hopeful. Now, screens, on the other hand, are one of the biggest stressors in our house. Every one of my children is hungry for a screen of any kind. Virtually all of the time. It is a constant struggle that escalates into battles nearly every day. So removing this particular pain point is a work in progress. If the current time limits and passcodes and remote control hiding systems fail or become too much work, I have two more slightly restrictive backup plans that I'm going to implement. The first would be installing a new router because you can find some with robust parental controls that have separate networks. So I can just turn off whatever network I assign to my child or children if they're abusing their online time. And if all else fails, I'm going to remove the device you can request with your school that your child doesn't bring their Chromebook home in middle school, whatever school, and if it's not necessary to do schoolwork, I don't want to hear. And that's kind of where we're going to head if we have to, because I don't want the fight. And while I want my children to be able to self-regulate when it comes to screen use. Research shows that developmentally it's incredibly difficult for kids, tweens, teens and young adults to do it responsibly. Now, add neurodiversity into the mix with that easy dopamine rush that you get from all of that digital stimulation and you realize that perhaps you're asking too much of these young minds. If adults have a hard time managing their screen time, how can we expect kids to be able to do it? And if you have any secrets, they're by all means share and I'll pass it along in a future episode. Managing expectations of ourselves and others is another area where an attitude adjustment might be in order. After all, my favorite equation is happiness equals reality minus expectations. A great way to alleviate so much stress and frustration is to stop expecting others to fill in the blank. Think about it. Kids are not going to magically start doing their chores without reminders. Partners aren't going to be able to read our minds and do what we wish that they would do without talking about it. And we're not going to be able to break every single one of our perceived habits overnight or even by the end of the year. We need to stop expecting these things of those around us and of ourselves. My own home is a really good example. I have busted my butt over the years trying every visual schedule and first and strategy out there. Guess what? Even with the best tools, most parents and caregivers are still going to need to remind their children to use those tools. Human prodding is still necessary, and this is especially if disabilities. In the next hour. Santa delivered this beautiful fancy skylight calendar to our home and this bad boy. It will link to our Google calendars. It has a short list for as many people as you want to add and a reward chart to go with that. It has meal planning options. It's amazing, but it's not magic. An adult still needs to encourage the kids to use it. An adult still needs to hand out the rewards. We've got to stop expecting adult level compliance from children. It's just not going to happen. The biggest impact we can have, though, lies within us. Most of us are harder on ourselves than anyone around us. So I want to point out a really good starting point, especially for caregivers. Take a very close look at the hours in your days and what your day is filled with. Time and time again, I end most of my days disappointed at what I was not able to accomplish. And then I'm overwhelmed about what's on my plate in the coming days because of that. First off, it's important to point out that getting an ADHD diagnosis a couple of years ago has helped tremendously in understanding why this is so hard for me. My mind is almost always working in hyper drive mode. Now you tack on the caregiver component of our lives, and in my house again, all three of my children, they have ADHD, which means I'm helping them manage their time, their list, their clothes, their school work, you name it, and doing this in a calm, supportive way with so much emotional dysregulation. And each of us is not just challenging, it is draining. There's only so much patience that anyone can have on any given day, let alone when you pile all those other stressors on top. So I started looking at each hour of my day to understand why it feels like I can't get anything done. And after doing this time on it, the problem was obvious. I was trying to do the impossible. And this is a level of impossible you can't see just by looking at my calendar. But it's just based on everything else that happens in our lives that go unseen, whether by our partners or our supervisors or our colleagues or our friends or our family or our children. Try it. Track your daily activities for a week and test this out. Because my issue with time management is not due to scrolling through social media or watching TV or playing games on my phone or texting friends. My workday is interrupted nearly every day because of medical appointments or calls from the school nurse or because my son's hearing aids are missing and I need to bring them in, or because someone forgot an instrument, or there's an IEP meeting or a five or four meeting or I have to do paperwork for Arlo's waiver, or there's an appointment with my daughter's behaviorist, or there's a dog training session to get our pop up to service dog status. I mean, every day there are things outside of my control where people need me and it pulls me from all the other things that I'm supposed to be doing. And the caregivers, I know we don't get personal days. If we have a smidge of time that isn't booked with caring for somebody else, then we just use it for the backlog of stuff piling up when we're caring for somebody else. And I don't know about you, but my backlog is turning into a massive mountain that follows me wherever I go. It's like a Tetris game that I look at and see if I can take something out and get it done without triggering something else to collapse and pummel me like an avalanche full of menial tasks that never stop coming. And I can't stop this avalanche. I set up all the supports that I can afford around me, and so the only thing left to do is to adjust my attitude. And so the first thing I started doing is to embrace that I am just going to be late. I hate being late, but I can't help it in most cases. And I actually want to thank Mel Robbins for this one. Another podcaster, the author of the book Let Them, which I've been listening to, and it's freeing. I don't normally jump on a book bandwagon, but so far I'm more than halfway through. And a lot of it just just lets you feel free. It's the idea of let them is that you can't control what others think about you, nor should you. And it's true. So as much as I hate being late, it's out of my control. And when I try to push everyone else to be on time, the commotion and stress and frustration it causes, it's not worth it. One appointment bleeds into the next. A five minute task can take 30. And suddenly I'm leaving for my 430 meeting at 445. I still hate being late, but instead of dwelling on it and feeling terrible about it, I'm going to apologize, move on, and chalk it up to being a really difficult time in my life. Speaking of all those appointments and meetings, enough. One thing I've learned after 14 years of being a parent caregiver is that no one has all the answers. Not doctors, not therapists, Not teachers. Nobody, y'all. I wish I could have recorded my daughter's session with that behavioral therapist in December. This professional was trying to reason with Maya about a reward system to help with the basics of getting to school each morning on time. And it's something I've been working on since Maya was three. To no avail. And so when the therapist asked Maya about a reward that might be meaningful, Maya replies, $1,000,000. And Maya was dead serious. And as the therapist pushed for more reasonable options, Maya didn't hold back and kept throwing out really difficult rewards to fulfill, making it a really difficult system to set up. And in that moment, I just gave up. And I observed my gorgeous Pharrell baby make this poor person work so hard for every minute that she was putting into this session. That's the thing about parenting. Everyone has the answers. There are books. There are professionals. There are fellow parents. But you know what? All it takes is one kid that doesn't fit into a mold. And this is why giving zero FS is a shift that pretty much every caregiver needs to make. Caregiving is such a unique existence. Especially if you have a loved one with invisible disabilities. The judgment is everywhere. Family, friends, teachers. People observing in public. If I try to talk about any of this stuff with someone who isn't a caregiver, nine times out of ten, I'll get the whole well, my kids would behave that way if I let them. Or you just need to blah, blah, blah. Or you should just blah, blah, blah. Or why don't you try. Bla bla bla bla bla bla bla bla bla. If only it were that easy. And also for you for putting this on me because I am trying so hard and you saying that it's my fault or it's my parenting. Well, you don't know me then. And I'll tell you what perimenopause is helping me give far fewrer if you seek Amy's; Anyone remember that Britney Spears song? Anyway, when my blood clot was first discovered, I was ordered to stop hormone replacement therapy, and suddenly my hot flashes were full on sweats. I mean, last night, my sweats and chills hit so badly I had to lay on the ground. I could barely breathe. It was it was something. And I think as women, we laugh this stuff off and we have heard other women in our lives laugh about it, but it's no joke. And when you're living in it, it is absolutely miserable and distracting and at times unbearable. My brain and body are going haywire. And it last three years. So with all this, I've even given up worrying about my potty mouth. I've tried to cut back on swearing for years, but right now I'm embracing my inner Roy Kent and letting the F-bombs fly freely. Except I'll bleep them for the podcast. It's funny, my dad hated swearing, and if he were buried, he'd be rolling in his grave. I'm not sure what the equivalent of that expression is when it's a box of ashes that my mom keeps on the coffee table next to her. Maybe he's scattering in his box. I don't know. But I like to think that if I could talk to my dad, he'd give me a free pass for sure, on the swearing. Perhaps that's the biggest adjustment I'm making in my life. Finding joy and kindness wherever I can until I'm able to produce my own Roy Kent fresh in my mind. Because my 12 year old and I are watching Ted Lasso together. It's my second time and his first and we just finished season two of Shrinking by the same creators, by the way. These shows just ease my mind and they soothe my soul. You know those periods of life where you're pretty sure things will be okay, but it's just really hard and there's nothing tangible to look forward to. No getaways, no celebrations. You're just getting by. Simple things like a TV show to look forward to that you can talk about that makes you smile. It's a pretty beautiful thing. The arts are there for a reason, right? But these two shows in particular touch on mental health in a way that not many others do. They're fictional examples that remind you that even though folks around you seem like they have it all together, they're going through their own stuff, they're figuring it out just like we are. And it's messy and it's embarrassing. But we're all here getting through it together. Just look for that light at the end of this tunnel and keep on keeping on. Thanks for listening. Be sure to review, subscribe, like follow or whatever it is you need to get a ping when the next episode drops. And while you're at it, drop us a comment and let us know what you're watching these days. This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.  

We're trying something different this episode: our first ever anonymous "airing of grievances." Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them.  When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back.  What about you? What secrets do you wish you could share?   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    TRANSCRIPTION: 01:00:06:19 - 01:00:36:11 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to join the club, so to speak, when my first child was born with Down's syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:36:13 - 01:01:03:16 Erin Croyle One of the mantras often shared in the Down's Syndrome community is more alike than different. While that is absolutely true for humans across the board, disabled or not, we do ourselves a disservice by not acknowledging how different our life experiences are. I've felt this deeply over the years. The society we live in, not just in the United States but globally, fails at understanding and accepting disability.   01:01:03:18 - 01:01:35:14 Erin Croyle It's often viewed as something to fix or overcome, which is often impossible, usually unnecessary and frankly, ridiculous and insulting. Disability is one of the many things that makes us who we are. It is natural and normal. The daily struggle that people with disabilities and their families face is exhausting. It's not just about those shopping carts we see left in accessible spaces or having someone drop the R word and mixed company as if it's as innocuous as talking about the weather.   01:01:35:16 - 01:02:04:18 Erin Croyle It's that loneliness we feel because many of the hardships we face are so private and painful that we don't speak of them. Out of respect for a child's autonomy or because we don't want to rehash it, it's the blatant ableism embedded in our systems and mindsets. It's painful microaggressions that slide largely under the radar. But not today. In honor of Festivus, I've reached out to peers who are impacted by disability.   01:02:04:20 - 01:02:21:05 Erin Croyle For an anonymous airing of grievances, asking them what they wish others understood about their experiences, that is rarely mentioned in the public arena.   01:02:21:07 - 01:02:45:01 Erin Croyle My husband and I are the youngest in each of our families. We became an aunt and an uncle before we became parents. And as I mentioned, I'm pretty much every podcast. Arlo, our first child, has multiple disabilities and medical complexities. Down syndrome is just the most obvious. Observing the family and friend dynamics over the years has been interesting, to say the least.   01:02:45:03 - 01:03:13:14 Erin Croyle Arlo is more alike than different for sure, but yeesh, the way people react to him or treat him ranges from weird to downright unacceptable. The times I've tried to address the able ism we experience in our own inner circle has been met with hostility. Over the years, I've learned to just avoid certain situations and people, especially since my own neurodiversity and mama bear rage, makes it hard to simply bite my tongue.   01:03:13:16 - 01:03:45:13 Erin Croyle And that brings us to the heart of today's episode an airing of grievances just in time for Festivus. Festivus, for those who don't know, is a secular holiday celebrated on December 23rd. Festivus came into the mainstream thanks to the sitcom Seinfeld and an episode that aired in 1997, The character Frank Costanza, played by comedy legend Jerry Stiller, delivers the iconic motto, A Festivus for the rest of us.   01:03:45:15 - 01:04:14:11 Erin Croyle What I did not know until working on this episode is that Festivus is an actual holiday. It's based on a tradition that one of the Seinfeld show writers, fathers invented as early as 1966. For this episode of The Odyssey, There will be no flagpole and no feats of strength. Wrestling matches. Instead, it's an honest, real and raw airing of grievances, but also pain, joy and humor.   01:04:14:13 - 01:04:48:13 Erin Croyle Because sometimes the things that are better left unsaid are also things that others need to know if they want to be fully present in our lives. This isn't just a bit an a complaint session. It's a window into our lives that we're putting out there in hopes to cultivate empathy and understanding. So without further ado, I will be reading what my friends and colleagues shared when I asked them What is something you wish others understood about your experience that you don't talk about?   01:04:48:15 - 01:05:14:09 Erin Croyle One person shared, I wish my family and friends didn't get upset if we have to deviate from the plan. Even with the best of plans and forethought. Things come up. Being flexible is necessary. While they may be upset because they have to adjust one moment in time, I've had to adjust my whole life to accommodate my child. You're going to be okay if you just do it once in a while.   01:05:14:11 - 01:05:37:14 Erin Croyle Another person says, Even though I rarely say yes, it means a lot to be included. So please keep inviting me to gatherings and maybe one day I'll surprise you. But if I don't know that I'm there in spirit, we all say the wrong things from time to time. Please don't avoid my family because you don't know what to say.   01:05:37:16 - 01:06:05:05 Erin Croyle I'm working to overcome my own embolism every day. I'm ashamed about some of the thoughts that pop into my head. It's not our fault. We're conditioned to see people with disabilities as less than or other. Rather than tiptoe around it. Can we just talk about it? Stop being afraid to ask me uncomfortable questions. And if I correct you for saying something offensive, please treat it as a learning experience and react with curiosity and kindness.   01:06:05:07 - 01:06:30:14 Erin Croyle Even if I'm not being particularly kind myself, it's hard to always offer grace and understanding when our children are still subjected to eugenics and no one blinks an eye. Just because you can't understand how I feel doesn't mean how I feel is wrong or doesn't matter. Dismissing my requests or concerns, causes me to feel like I don't matter and I'm not being heard.   01:06:30:16 - 01:06:57:11 Erin Croyle Being different is not wrong. No one else will ever understand my struggles, but it would be nice if that was acknowledged. The following is from a person with an invisible disability who has worked with people with disabilities their entire life, both in volunteer work and actual employment. They also have a brother with multiple disabilities and they shared six different items.   01:06:57:12 - 01:07:28:02 Erin Croyle Number one. Not every disability is visible or even noticeable to even high functioning individuals can have disabilities, both physical and mental health oriented. Three siblings can be some of the greatest support for individuals with disabilities, but are so often overlooked. Number four siblings can also feel the pressure from parents because they are, quote unquote, the normal ones. At the same time, they can feel ignored.   01:07:28:03 - 01:07:50:20 Erin Croyle So parents need to make sure they're meeting the needs of all of their children. Five Even though it's hard to do, families need to treat adults with disabilities as adults no matter what their function level is. My brother hates when people treat him like a child. Six. You have to take care of yourself or you can't care for anyone else.   01:07:50:22 - 01:08:19:06 Erin Croyle My mother raised a child with disabilities and myself in an era where this was almost frowned upon. Now she preaches it to everyone from her own experience. The next person said, If you claim to love and care about us, then start showing it. This work is impossible to do alone. Get involved. If you're on the PTA, for example, intentionally go out of your way to think about accessibility, equity and inclusion.   01:08:19:08 - 01:08:42:14 Erin Croyle Caregivers are drowning in not just caregiving, but all the paperwork and red tape that still exists. We like to be involved, but we physically cannot take on anything else. We need help in breaking down barriers to inclusion. That starts with our parenting peers paying attention and figuring out what needs to be done without putting the mental load in actual work on us.   01:08:42:16 - 01:09:05:22 Erin Croyle The systems need changing, but we're up to our ears just trudging through the day. We need allies and coconspirators. As a parent of two adult children with disabilities, one thing that frustrates me is when people say Your kids look normal, why don't they act like it? Then I feel like I have to explain everything about what's going on with my children or another personal favorite.   01:09:05:24 - 01:09:30:04 Erin Croyle They don't look like they have a disability. One time I answered and said, Yeah, I know I had to pay extra for that. Ha ha. Caring for two adult children with disabilities can at times be very lonely outside of my family. I only have one close friend. Over the years I have lost many friends as they did not know what to do or how to interact with my children.   01:09:30:06 - 01:09:57:17 Erin Croyle I keep trying to let people know that you just have to talk to them as you would anyone else. They're wonderful human beings and have many things to share and give to our community. As a professional with a disability, I can feel overwhelmed and frustrated when reasonable accommodations are asked for and not given. Another parent says, Just because my teenage child doesn't communicate traditionally doesn't mean you should talk to him like he's a toddler.   01:09:57:23 - 01:10:24:04 Erin Croyle He's a teenager, for crying out loud. Another parent says, I wish my peers understood how complicated caregiving is. I don't talk about this openly because it's nobody's darn business. But total care means total toileting, shaving, teeth brushing, dressing, feeding. For girls, this means feminine hygiene. For boys, it's washing their privates. It's navigating through puberty. And later, sexual needs.   01:10:24:06 - 01:10:49:03 Erin Croyle That whole birds and bees talk that parents get all stressed about with their typically developing kids. Imagine having to search for and hand over a social story about erections and masturbation to your teen. Everything in our lives is just next level. It's wild. Another parent said, I love my child and will do anything for them. But I hope God never gives you more than you can handle.   01:10:49:08 - 01:11:11:21 Erin Croyle It is patently false. I'm hanging on by a thread most days. Screaming mercy on the inside. But I can't say that out loud because my child does not deserve to hear that. Sometimes I wish I could just be a parent. I'm tired. I'm getting old. My body needs a break. What you're not prepared for is that caregiving last so long.   01:11:11:23 - 01:11:35:03 Erin Croyle My adult child with a disability still needs so much care. That includes toileting. Health care. Transportation. Preparing meals, coordinating appointments, and more. When my other kids were young, it was just part of the drill because I was taking care of everyone. But the siblings are grown now and all of my friends have moved on. There are no more school programs or playdates, but I'm still providing the same level of care for my adult child.   01:11:35:05 - 01:11:56:14 Erin Croyle Most days I don't mind, but sometimes it can feel really overwhelming. A parent of an adult child with a disability shares. I fantasize about getting divorced, but the hardship it would create is far worse than remaining in a miserable marriage. When you have a child with significant support needs, there is so much more to consider than personal contentment.   01:11:56:16 - 01:12:24:22 Erin Croyle Everything is more complicated finances, employment, health care and being tied to your co-parent forever because there is no when they turn 18 for us. I mean, there is. But it actually gets harder when our kids become adults. Not easier. Another parent shares. I thought that when my child became an adult, things would get easier. I was wrong. Sometimes I feel like I can't trust hope and happiness when it comes to her living her life.   01:12:24:24 - 01:12:47:16 Erin Croyle I feel like I'm always waiting for the other foot to drop, which it usually does, And somehow I'm always shocked. And then I mourn what I wish her life could be. I remember her as a happy child, and it breaks my heart. So I try not to dwell on that too long. There are times I feel like a hypocrite when I help other families because I can't fix my own.   01:12:47:18 - 01:13:05:11 Erin Croyle Another person wrote, People ignore me. Now they leave me alone. I'm sorry if I have not taken the time to connect with you, but I am dealing with my adult children who are not like your adult children. We have the best time and I absolutely enjoy spending time with my kiddos. But it seems apparent that they will never leave home.   01:13:05:11 - 01:13:32:18 Erin Croyle And I'm absolutely overwhelmed. Exhausted. So freaking tired. And I just want to go hibernate somewhere. But I cannot. My children need me. I have a new disability diagnosis thanks to having had COVID and not recovering fully. I wish you could understand COVID is most certainly real and it has affected so many people with lingering issues. We have had to deal with, even after COVID has supposedly gone away.   01:13:32:20 - 01:13:56:10 Erin Croyle A family member of an adult with developmental disabilities who's also a professional at the Partnership for People with Disabilities, says it's always interesting to share what I do with others. When I do share my profession with other professionals or friends who have not had personal or professional experience with people with intellectual disabilities. There's always a visible change in their demeanor.   01:13:56:12 - 01:14:24:13 Erin Croyle Usually shock or confusion. I then have to explain what intellectual disabilities are and how my job works. I wish more people recognized that there's this whole population of people living and breathing in their world. People with ID live and work in their community and access the same level of community based amenities, services and supports. But it's as if most people never consider their existence.   01:14:24:15 - 01:14:59:12 Erin Croyle I think this reaction speaks to the lack of integration of people with intellectual and developmental disabilities in our lives. Beyond the school setting, another professional who has a family member with disabilities said I wish more health care providers understood the importance of and prioritize spending more time with patients with intellectual and developmental disabilities during appointments. People with I want to be involved in their own health care, but they need more time and direction to do so.   01:14:59:14 - 01:15:29:06 Erin Croyle I also wish more health care and community based providers like local health departments and public services on the city and county level understood that using plain language in their communications doesn't just benefit people with modifying materials, so they're universally easier to read and understand is beneficial for many other populations and could increase the uptake of programing or health care recommendations.   01:15:29:08 - 01:15:58:03 Erin Croyle And this last one is from someone who does not want to remain anonymous. My friend and colleague Jill Rose is just the epitome of positivity most times and had this beautiful sort of grand finale of a story to end on. Thank you, Joe. When my daughter was born 14 years ago with Down's Syndrome, one of my many initial fears was that I wouldn't be able to communicate with her.   01:15:58:05 - 01:16:22:05 Erin Croyle While her verbal skills are at the lower end. We do still communicate in our own ways. We sing and dance a lot. We've developed our own language and words. For example, we call each other Mushi, which is just a word she made up years ago. She's much more brave than I am. She rides all of the scary rollercoasters with hubby while I sit on a bench and watch the bags.   01:16:22:07 - 01:16:44:21 Erin Croyle When we go to the doctors and I have blood taken or need a shot, she knowing how nervous I get, grabs my hand and says, Be brave. She can sense when I'm sad or anxious. It is her unique gift when she senses it, she says It's my turn as she comes to me with open arms. Her healing energy always helps.   01:16:44:23 - 01:17:03:21 Erin Croyle I gave birth to Sophia, 14 years ago, and if I could go back in time and speak to my younger, fearful self, I would say, Don't be scared. Because in this scenario you're the lucky one.   01:17:03:23 - 01:17:30:02 Erin Croyle Thank you, Jill. Thank you to everyone who contributed. And thank you listeners. Be sure to rate me as you subscribe. Like follow or whatever it is you need so you get a pain when the next show drops. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon. Happy Festivus.    

Right now in the United States, more than 53 million family members are providing unpaid and mostly unseen care to the loved ones in our lives. According to the National Council on Aging, that's an economic value that totals more than $470 billion. Since November is National Family Caregivers Month, we wanted to highlight what it means to be a caregiver and why everyone should be looking out for the caregivers in their lives. The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: Read more about how different caregiving and parenting are on the Center for Family Involvement's blog: CAREGIVING AND PARENTING ARE NOT THE SAME CAREGIVING AND PARENTING ARE NOT THE SAME: BACK TO SCHOOL EDITION Learn more about disability services and how to become a paid caregiver.     TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work with the Center for Family Involvement and VCU's Partnership for People with Disabilities.   01:00:37:05 - 01:00:47:20 Erin Croyle I started this podcast because the media rarely highlights the issues that impact us so deeply. Caregiving is one of them.   01:00:47:22 - 01:01:10:03 Erin Croyle More and more, we're seeing the term caregiving lumped in with general parenting duties, diluting what it truly means to be a caregiver. In honor of November being National Family Caregivers Month. I'm going to break down how parenting and caregiving are fundamentally different.   01:01:10:05 - 01:01:38:17 Erin Croyle I'm going to keep it real with you. Listener. This episode is really late. It should have been out last month and that episode is still coming. It's in honor of October being National Disability Employment Awareness Month, and I've interviewed two wonderful guests already and that will be out soon. But like so many parents and caregivers, I know things are just relentless.   01:01:38:19 - 01:02:07:08 Erin Croyle And I am at the point in my life where I recognize that it is impossible to meet all of the demands placed on us as parents who are also caregivers. But it's almost as impossible to realize that what we as parents and caregivers come to know is our normal is not the norm and it is so important to point this out, not to wallow in how hard it can be because nobody has time to wallow.   01:02:07:14 - 01:02:33:23 Erin Croyle And who the heck wants to anyway, right? But it's important to validate the feelings of overwhelm and burnout and exhaustion and sadness and frustration that we feel this society we live in isn't designed for kids like ours, and it's not kind to caregivers either. Even politics. And we don't really get into politics, right? I leave that out of this.   01:02:34:00 - 01:03:03:20 Erin Croyle But for caregivers, there are things you need to know during voting cycles about the way that our government structures work that most people don't even know are there. You have to understand health care and Medicaid and waivers and supports that your children will need when you're gone. And you have to face the extreme difficulty of knowing that you could very well outlive your child.   01:03:03:22 - 01:03:33:20 Erin Croyle Do you have to set up things for when you're gone to make sure that your kid is going to be okay? It's something else. And I don't think that as caregivers, we really talk about that openly. That kind of melancholy that we live in. And this isn't just about those significant disabilities where someone will need care their whole life.   01:03:33:21 - 01:04:08:11 Erin Croyle I mean, that's certainly part of it. But I've got to be honest, my own able isn't blind in me to how difficult it can be to care for someone with ADHD or mental health struggles. Neurodiversity. Physical Disabilities. Even though someone will be able to live on their own one day with less supports does not mean that the caregiving to get them to that point is not substantial.   01:04:08:13 - 01:04:41:04 Erin Croyle It's a lot. And just getting a diagnosis for these invisible disabilities in rare conditions is really hard. And that alone takes time. Believe me, I'm there. I have three kids and neurodiversity is through and through in our household. And and we didn't really see that until later because my oldest child's needs were so great. The idea that there was neurodiversity in my youngest, I don't think that I picked that up soon enough.   01:04:41:04 - 01:05:12:15 Erin Croyle And I'm still struggling to recognize what they need and the differences. And that's coming from me. Who was diagnosed late in life with ADHD, who's understanding my own nerd adversity and how that's impacted me my whole life. There's such a stigma to so many disabilities. Neurodiversity is whatever you want to call them that we fail to recognize the accommodations and supports and understanding that is needed.   01:05:12:17 - 01:05:44:09 Erin Croyle And unless you experience that, you're not going to understand it. And in fact, I know in some ways those invisible disabilities can be harder because you have to constantly prove to people that it's not a spoiled kid, that it's not a bad child, that it's not bad parenting. It's not. I used to joke that no, doesn't really work in our house and I could feel the eye rolls from the family elders.   01:05:44:11 - 01:06:31:03 Erin Croyle And I'll tell you what. No does not work in our house. It just doesn't. And it's hard. My kids aren't spoiled. Just had to take a completely different route of how I view parenting than what I thought it would be. And I often wonder who I would be if my kids were non-disabled and neurotypical. And I'm actually really grateful that the differences in my kids have enlightened me to the differences that we need to accept in this world, in this society, in our schools, everywhere.   01:06:31:05 - 01:07:01:01 Erin Croyle And we're still not there. That's why we really need to highlight how complicated and different the caregiving component of being a parent caregiver can be. My first child, Arlo, as I mentioned in the intro, was diagnosed with Down syndrome soon after he was born. Later came other diagnoses hearing loss, sleep apnea, ADHD for him as well. Anxiety. He's immunocompromised.   01:07:01:03 - 01:07:28:14 Erin Croyle We've dealt with heart issues both early on and then later asthma, and then most recently something called ITP or chronic thrombocytopenia. This is low platelet counts that you discover in routine bloodwork, and that routine blood work is routine for my kid with Down's syndrome. But most kids don't have to have annual bloodwork to monitor thyroid and iron and all of these things, right?   01:07:28:14 - 01:07:56:06 Erin Croyle That's just another caregiving aspect that is necessary and important, but it's a lot. And thankfully, my son is very good with doctors, but early on he wasn't. And it was torture. Taking him to see an EMT and have to hold him down to get his ears cleaned or literally wrap my body around him for his blood draws. It rips your heart out.   01:07:56:08 - 01:08:21:19 Erin Croyle And in so many cases, we don't really have anyone to talk to because if you turn to family elders who haven't been impacted by disability, I mean, I remember one person saying to me how parenting is all about disappointment and letdowns and you got it all at once when your son was born with Down syndrome. As a new parent, I just kind of nodded and thought, okay.   01:08:21:21 - 01:09:00:17 Erin Croyle And that is the biggest bunch of baloney I've ever heard for children who are neurotypical non-disabled. The decks aren't stacked against them at birth right. But if you're in a wheelchair, if you have hearing loss, if you have any sort of thing that needs extra help or assistance, even though it's there, my gosh, it's hard to find. And it takes someone who can have the tenacity, the patience, the time and the energy to find all the supports that are there.   01:09:00:19 - 01:09:27:06 Erin Croyle And even the supports that are there are so tough to get. I mean, waivers, my son has elopement issues and we have a waiver for him. And we wanted a fence as an environmental modification to help keep him safe in our yard without having to be out there constantly just to give him space without someone hovering over him.   01:09:27:08 - 01:09:53:04 Erin Croyle And it took five years to get that approved. Much of that because of errors from the people working in the waiver system. I mean, that's the sort of thing that people are dealing with, the supports in place like respite care, personal care attendants, the hoops you have to jump through to get those supports are so tough to get.   01:09:53:06 - 01:10:21:22 Erin Croyle And the people in those roles, they don't get paid enough or they're not really invested or they're college students, so they're in and out and gone. And as parents you have to train them. So you have to train a caregiver every couple of months. It's exhausting. And when parents or family members are providing the care, it is really difficult for them to be paid as caregivers.   01:10:21:24 - 01:11:12:10 Erin Croyle Most states don't allow it, certainly not under 18. And the income loss that you face as a family who has to support children with disabilities, even if you have help around, it's substantial and it just creates this extra stress in your life that you really don't need. Even the term caregiving is being watered down. I get the grandparents and extended family that service parents gravitate towards the caregiver title because it is kind of a catchall, but a caregiver by definition and as a family member or paid helper who regularly looks after a child or a person who is sick, elderly or disabled, all parents serve it caregivers from time to time.   01:11:12:12 - 01:11:37:12 Erin Croyle But that's not the same as the primary caregiver role that so many of us took on the moment we became a mom or dad. Now this matters because we need to acknowledge how different and challenging that hybrid parent caregiver role is. It can consume us without realizing it because we love our children so deeply, will go to great lengths to ensure their comfort.   01:11:37:14 - 01:12:04:20 Erin Croyle And like I said before, that becomes our new normal. But again, it is not the norm. A really good example of this is part of why this episode is so late. So my family got hit with a stomach flu and it hit my daughter first and then I got hit because I had to steam clean the car with the mess that was even though my kid was nine, they couldn't really get it in the bucket.   01:12:04:20 - 01:12:31:23 Erin Croyle And that's okay. And even though I wore like a mask and gloves, I still got sick a couple of days later. And my gosh, it was miserable. Well, then my 14 year old, he gets the stomach flu, but he's not able to really say that to anyone in a in a conventional way that makes us understand. So he's at school and I had already warned folks at school, so they're right there as part of the caregiving aspect.   01:12:31:23 - 01:12:59:14 Erin Croyle I'm in constant touch with my children's school, both my son, my oldest, so three kids, so my oldest with Down Syndrome and ADHD and so many other medical complexities. And then my youngest with ADHD, who experiences anxiety, which can manifest in stomachaches and and emotional dysregulation. So I hear from their school a lot.   01:12:59:16 - 01:13:21:10 Erin Croyle But when my 14 year old gets the stomach flu, it's it's an event. If he has to throw up, he doesn't really tell us. He just kind of does it. And so I have to pay attention to the nonverbal cues because he'll do this thing with his lips. That's, you know, he only does really when he's about to throw up.   01:13:21:12 - 01:13:47:08 Erin Croyle And then I have to help him catch a bucket. And so as I'm on the mend from the stomach flu, I am then helping him get his vomit into a bucket. And I pulled an all nighter because every time I he would wake up and Russell, I would be ready to help him. And also because he was sleeping and laying down, I had to help him move forward so he wouldn't get sick or choke.   01:13:47:10 - 01:14:13:15 Erin Croyle I mean, it was tough. And most 14 year olds, you're going to bring him some ginger ale and give him some Tylenol and they're going to be okay and they're going to watch TV. But for me, this was round the clock care. And that's the case with a lot of illnesses. And that's just one example. Several years ago, I wrote a blog called Caregiving and Parenting are Not the Same.   01:14:13:15 - 01:14:39:03 Erin Croyle And to this day, that blog gets more traffic than probably anything I've written. And so I'm going to read some of those comparisons to give myself some grace in what has been a really tough year. I'll also put the article link in the show notes. You can read it in your own time, and I would love to hear what differences you recognize in your own circles and in some of the challenges that you face.   01:14:39:06 - 01:15:07:18 Erin Croyle Because like the title of this podcast, I think we need to acknowledge these differences and support each other and also let others know what we're going through. Because I don't know about you, but this experience of caregiving can be isolating. You are so entrenched in all of the work that you have to do both for your actual job and then for your parenting role and then for your caregiving role.   01:15:07:20 - 01:15:41:12 Erin Croyle And then if you have a partner in your life, there's that other children, there's that a pet, there's that there. There aren't enough hours in the day to do it all. And I really think it's important for us to start recognizing that and start really just asking those around us to acknowledge that, to recognize that, and then help fix the structures in place that make it so hard for us to just function.   01:15:41:14 - 01:16:16:07 Erin Croyle Because even advocacy efforts that we could be doing as caregivers, the people I know are so tired they can't get it together to just advocate for the most simple things. And so because I'm so spent, I'm going to read a bit from my blog and leave it at that. How is parenting different from caregiving? Parents need babysitters. Caregivers need respite.   01:16:16:09 - 01:16:44:09 Erin Croyle Parents take their kids to well visits and sick visits a couple of times a year. Caregivers administer treatments and carry binders full of medical records to quarterly, monthly, sometimes weekly appointments. Parents listen to doctors. Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions. Caregivers are often the most important part of the medical team. Parents make dinner.   01:16:44:11 - 01:17:11:15 Erin Croyle Caregivers feed their children by mouth, by tube, whatever is needed. Parents tell their kids to do their homework while they prep dinner. Caregivers spend an hour helping a child do what should be 10 minutes of homework, which they've also helped modify. Dinner is usually a crapshoot. Parents go to parent teacher conferences. Caregivers go to those conferences. And also IEP meetings.   01:17:11:15 - 01:17:41:20 Erin Croyle Behavior plan meetings, care plan meetings, person centered planning meetings, Medicaid eligibility meetings. So many meetings. Parents take their kids to soccer practice, drink coffee on the sideline and shoot the breeze with other parents. Caregivers search for a sport or program that is suitable. Fill out piles of paperwork, meet with the people running the program, go for accommodations needed and are on high alert, monitoring their loved one, often jumping in to help.   01:17:41:22 - 01:18:09:06 Erin Croyle Sometimes even coaching because no one else there will make the accommodations needed for their child to participate. Parents sign their kids up for afterschool clubs. Caregivers contact clubs to see if supports are available. They usually aren't. So they request assistance offered to help change the system or offer support themselves. Caregivers sometimes give up or don't bother asking because it's not worth the effort.   01:18:09:08 - 01:18:35:10 Erin Croyle Parenting is planning a family vacation to somewhere fun. Caregiving is wondering how you can make endless visits to specialists feel like a vacation because you have no money or leave for anything else. Caregiving is for getting that dream vacation and finding something that's doable because medical conditions make travel difficult. Parents park in the most convenient space available for their family's needs.   01:18:35:12 - 01:18:58:06 Erin Croyle Caregivers arrive to events early, hoping to secure a disabled parking spot. Those spots are often taken by parents who don't need them but thought 5 minutes don't matter. So caregivers navigate dangerous parking lots, pushing a wheelchair or monitoring a child who might collapse in the middle of the parking lot or run off with no safety awareness of cars.   01:18:58:08 - 01:19:27:16 Erin Croyle Parents are often sleep deprived for the first few months and years of a child's life. Caregivers are sleep deprived indefinitely. Parents carry a diaper bag. And later some extra clothes and eventually just their own stuff again. Caregivers bags only get bigger in every sense bigger diapers, bigger clothes, and the emotional baggage we carry. But keep buried down below gets heavier as we see our loved ones peers pass them by as the little kid cute fades.   01:19:27:20 - 01:19:58:03 Erin Croyle Stairs become less kind and more prominent and it stings. But we barely have time to process it because we have to keep on caregiving. Parents rules change when their children become adults. They'll always be a parent, but their work is done. Caregivers will always be caregivers, and their role becomes more complicated as time goes on. So if November National Caregivers Month, how do we care for our caregivers?   01:19:58:05 - 01:20:32:14 Erin Croyle We need to be kind to ourselves. We need to gently let others in our lives know how hard this can be. While also letting them know it's not our children that make it hard. I can never say this enough. My children are not a burden. It is the constructs of our society that create the burden. It's not possible to meet all the demands placed on us.   01:20:32:16 - 01:21:08:06 Erin Croyle And when you're a caregiver and you're literally taking care of someone else, keeping them alive, keeping them well, keeping them out of the hospital, keeping them in a safe space in their own mind and body, that is a lot of work that no one is going to understand unless they've had to do it themselves. And so we need to be more honest about our workloads, about what we're doing in our days.   01:21:08:08 - 01:21:18:09 Erin Croyle Sure, things are nobody's business, but my gosh, sometimes I think it really helps for people to know what other people are going through.   01:21:18:11 - 01:22:01:16 Erin Croyle Stop shoulding yourself. I should have taken a shower today. I should have eaten breakfast. I should have gotten this podcast out last month. Should, should, should y'all. There are so many shoulds out there that we could wake up tomorrow and everything could change. What we really should be doing is prioritizing what matters. And so if you have to miss a deadline or just know that some days the only thing we can do is meet the most basic and primal needs around us.   Erin Croyle So be kind to your family, to yourself. And when everything feels like too much, toss out all those arbitrary rules that you make for yourself and others make for you. Ask for some help. Step outside and breathe. And remember, you're not alone.   Erin Croyle So listen to all my fellow caregivers out there. Happy national caregivers Month. Take a load off. Do something for yourself. Chill out and be sure to share. Review. Subscribe. Like follow. Or whatever it is you need to do to get a ping When my next episode drops. This is The Odyssey. Parenting. Caregiving Disability. I'm Erin Croyle. We'll talk soon.    

Meaningful inclusion is possible, if we're being honest though, it's so rare that most folks don't even know what it looks like. In part two of this episode on inclusion in public schools (be sure to check out part one!), Erin Croyle has educator and advocate Trina Allen break down what co-teaching is, how it works, and what can be done to make truly inclusive education a reality.  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.      SHOW NOTES: Talia A. Lewis' Working Definiciton of Ableism. How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done. National Center for Education Statistics releases various annual reports and as well as topical studies.  More on the Ithaca City School District.  Inclusion benefits EVERYone. Learn more about the Individuals with Disabilities Education Act (IDEA).         TRANSCRIPT: 01:00:07:11 - 01:00:39:01 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I joined the caregiver club 14 years ago when my first child was born with Down syndrome. My journey weaved its way here, working for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:39:03 - 01:01:09:07 Erin Croyle This podcast highlights the joys and hardships we face. Celebrating how amazing the odyssey of parenting, caregiving and disability can be. While examining the spiderweb of complex issues, we're tangled in, The fight for meaningful inclusion in our schools is a struggle for so many of us. In our last episode, I spoke with special education teacher advocate, activist and parent Trina Allen.   01:01:09:09 - 01:01:31:21 Erin Croyle We left off talking about how gut wrenching advocating for an inclusive education can be, especially as our kids get older. And we're picking up right there with Trina telling us not only that it can be done, but how we can do it.   01:01:31:23 - 01:01:47:19 Erin Croyle I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track. The thing is, like a kid with Down syndrome is one kid with Down syndrome.   01:01:47:22 - 01:01:50:04 Trina Allen Thank you!   01:01:50:06 - 01:02:17:19 Erin Croyle Yes, Autism is one kid with autism. CP And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is. I think that our schools, once we get to a certain level, it's not parents failing, but it's their schools not offering enough options for kids with more significant needs.   01:02:17:19 - 01:02:34:24 Erin Croyle Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that. Trina Allen Fix it! Erin Croyle They reach a certain age and there's no choice anymore, right? No other option anymore.   Trina Allen So while we're on the fight for inclusion, it cannot be on the back of our individual child and listening to what he needs in the moment is the biggest fight of ableism. Listening to him is the biggest fight of Abel's that you will ever do with him. The issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things.   01:03:03:03 - 01:03:27:24 Trina Allen That math class needs to be structured on. These are the standards, and every single kid in it is at a different place and it needs to be supported in that way. And so do I think it can be done? my God. Math is like the easiest. You know, it becomes more complicated in like history and English, but it doesn't have to be if the design is universal.   01:03:28:01 - 01:03:47:17 Trina Allen Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son. That curriculum needs to be created with him and created with the kid at a different level and created with a kid at the different level and created with the kid in a different level.   01:03:47:19 - 01:04:27:00 Trina Allen And it needs to be individualized. And that is doable with time and space. And what I do like about the current district that, you know, that we both are dealing with is that's the goal. And when the systems have not created all of those levels of curriculum and are displayed by the slide show and are displayed in all those quiet ways that are as equal and that are that his production is as integrated and valued as what they expectation is that his production is the expectation.   01:04:27:00 - 01:04:54:03 Trina Allen Right. And that there are multiple other children in the class with interesting and independent and specialized production. That model is doable. You know, it's so doable and I can see it and I know how to do it. I just need some time and I know that other teachers want that. And with all liberatory struggles, we need to understand that we are not working.   01:04:54:03 - 01:05:25:24 Trina Allen For now, boys. We have to harm reduce in the now, right, Because it can't be on the back of our own children. But to know that we are creating a world in which that loves them better is important. All of those kids in the class that sees what a truly universal design lesson is are benefited right, whether they're disabled or neurotypical or not.   01:05:26:01 - 01:05:37:10 Trina Allen I think that that is happening. It's just not happening fast enough and it's not happening in every classroom. It depends on the teacher. The teacher. It depends on the there needs to be a good teacher herself.   01:05:37:12 - 01:05:40:05 Erin Croyle yeah, absolutely. And that doesn't exist everywhere.   01:05:40:09 - 01:05:48:10 Trina Allen No. And in most places it doesn't. And most places pull out of teaching is what they're just talking about. Reasons for it. They say, Coach Jane, you're talking about racism.   01:05:48:12 - 01:05:57:10 Erin Croyle And what in fact, I think I think briefly, I think it's important because I believe that there are going to be people listening who don't even know what a co teaching model is. Do you want to explain that?   01:05:57:15 - 01:06:47:11 Trina Allen Yes. Okay. You're right. Okay. So there are multiple ways in which co teaching can look well we talk about co teaching is just like term is meaningless unless we're talking about the individual place in which it's practice. When I say co teaching and I actually mean it as opposed to placement, I mean a classroom with two teachers who create the lessons together who are based off of whatever it is that you're trying to teach, whether it be art or history or math or whatever, so that you are creating it together in a universal design, meaning that every standard from pre-K to 12th grade So you're going to have some kids that go are reading at   01:06:47:11 - 01:07:32:01 Trina Allen the 12th grade level, you better hit them right? You are making the instruction to meet an understanding at each space. Right? And that I expected outcomes are somewhere on that distribution and you don't pick which one is right. You just portfolio out there where that kid is right and you teach them. The next thing we can talk about seventh grade standards and we can say, yes, this is where we're hoping that kids are at with the understanding that not everyone's going to be at that place and with the understanding that some kids might be in ninth grade and some kids might be a fifth grade.   01:07:32:04 - 01:07:51:01 Trina Allen And that is fine for the kids at fifth grade, we're looking at the sixth grade standards for the kids. At ninth grade, we're looking at the 10th grade standards. So we're moving them where they want to go. And also based on their personal needs, let's say they really hate math and they're just getting through it. But my God, they love English.   01:07:51:01 - 01:08:23:13 Trina Allen So, you know, let's let's push them a little harder on that. Let's show them all this wealth of information that they're very interested. It's individualized based both on where they're at in that particular subject and also personal understanding and ways in which they learn. And it also needs to be, if it's a student who is not speaking and needs to be completely accessible with their AC, and it needs to be provided in multiple output ways, everything needs to be using the technology assistance that they need and have, and it needs to be titrated to their individual.   01:08:23:13 - 01:08:57:07 Trina Allen And that is a big ask for Koti to write. That's just one lesson and I think I've said a lot. So is it doable in every time and every way? If you're teaching five different periods and you have 100 kids and no, it's really, really hard to do that, especially when you're often not giving a co teacher or when people misunderstand the model and think that the co teacher is to adapt the work, that there is an expected work.   01:08:57:09 - 01:09:24:02 Trina Allen And it's this narrow standard that you're teaching for the class and then everything else is an adaptation you make, you do with your kids that is not co teaching, that is placement in a generic classroom. It needs to be the curriculum needs to be created with guidelines at everyone's level. Otherwise kids fall through the cracks, right, right. Or disabled or not.   01:09:24:04 - 01:09:58:14 Trina Allen And that co teaching model is great. It also, in my opinion, needs to have it can't just be one student that is multiple disabled, has higher support needs in a class that needs to be civil cohorts, right? Because anybody that feels like radically different, unless they have the either care, but if they have a personality that is more sensitive or self-conscious, you know, like anxiety based, they need to feel like they are part of a collective as well, that there's matching in in peers as well.   01:09:58:18 - 01:10:11:23 Trina Allen Yeah. Need to feel a sense of belonging again. And honestly, the environment needs to change as well. You're talking about folks with sensory needs. The typical classroom is.   01:10:12:00 - 01:10:15:06 Erin Croyle fluorescent lights and the acoustics.   01:10:15:08 - 01:10:38:16 Trina Allen It needs to change. We can make modifications that I tried to in my classroom. I get a swing, I put up things and the lights and the fire marshal tells me to take them down, make up, not looking. No, I'm kidding. I get fire safe ones, right? I have the tag and the fire. Right. You can't change walls.   01:10:38:18 - 01:10:46:02 Erin Croyle Right? If you don't have windows, you can find ways to provide light. If you have windows, you can get shades that make the light not so bright.   01:10:46:04 - 01:10:46:21 Trina Allen Right?   01:10:46:23 - 01:11:00:03 Erin Croyle I still remember reading somewhere, you know, a teacher who really decorated the classroom and had all these glittery things. And there was a student in there with sensory issues and the blinking was really just triggering for them.   01:11:00:03 - 01:11:00:11 Trina Allen Yeah.   01:11:00:17 - 01:11:30:12 Erin Croyle Like you have to really see the whole classroom. And Trina, before I forget, I just have to say, the way that you talked about my son, I think is so important because students deserve their teachers to see them for who they are. The way that you see my son, that connection and that being able to understand, most people would just see a kid with Down's syndrome behavior issues that don't want to see in school.   01:11:30:14 - 01:11:38:12 Erin Croyle You get to know your students to know that actually Arlo wants to be successful and feel good. You know that about him.   01:11:38:14 - 01:11:39:02 Trina Allen my God.   01:11:39:04 - 01:11:40:03 Erin Croyle how your you're body.   01:11:40:03 - 01:12:12:06 Trina Allen That anybody that doesn't see that right away has been horribly trained by our society not to see it. It is a paradox. If I had to rely on what my students said to know who they were, I'd be in a world of hurt, you know, like that empathy that like who we are. It's so funny too, because teachers and we spend so much time, like often times graduate and myself to make connections with kids, you know, not congratulating myself, but like, yeah, hey, I made that in with that kid and good.   01:12:12:06 - 01:12:26:01 Trina Allen And I didn't know how, but realistically, they do it all the time. Do you want to talk about kids who are forced to know the adults around them? Disabled kids, especially non-speaking kids, are the ones to ask.   01:12:26:03 - 01:12:45:17 Erin Croyle It's interesting. I recently I had someone asked me and this is something that comes up periodically because students with disabilities have such vast needs that sometimes it doesn't feel appropriate. So I think a lot of times parents, especially in younger years or grade school years, sometimes our kids have to use a diaper way later than others.   01:12:45:18 - 01:13:06:01 Trina Allen my God. Yeah, right. Yeah, 100%. And some people will always need dollars. Some people will always need a bathroom assistance for the rest of their life. And that is okay that they should be in charge of who, when, why, how, and what. And if you want to get on a real rant, talk to me about the specifics of that.   01:13:06:01 - 01:13:38:14 Trina Allen In a multiple disabled classroom in which no agency is enough. And I when we talk about body fascism, when we talk about eugenics, when you relate to all of the things that people might need, all of the things that people might need in a daily care kind of way, it's important to me the lack of humanity we give folks.   01:13:38:16 - 01:13:46:24 Erin Croyle I completely agree. I mean, the lack of adult changing tables, rooms that are, you know, accessible, available, available there.   01:13:47:01 - 01:14:04:19 Trina Allen That there are stairs when people use a wheelchairs and that the primary consideration is to make a space safe for them, that they have to take a janky elevator with an adult who happens to have a key. Yeah Yo, now, like most.   01:14:04:19 - 01:14:10:09 Erin Croyle People imagine how claustrophobic and trapped that must make students feel.   01:14:10:11 - 01:14:29:19 Trina Allen I the first year that I taught in the district previous I had a classroom with 15 kids, five of whom used wheelchairs exclusively. And I had myself and one para told me with expectations for that.   01:14:29:21 - 01:14:35:03 Erin Croyle And then a lot of those situations, these are students. You should have 1 to 1 support.   01:14:35:04 - 01:14:36:02 Trina Allen Well, they were all supposed to.   01:14:36:06 - 01:14:57:23 Erin Croyle But they don't. Let me ask you a question then. I think sometimes people who are not involved in disability, who don't understand it, they think that there are some open and closed cases where general education is not appropriate. So is there any clear cut case where, you know.   01:14:57:24 - 01:15:20:17 Trina Allen And in fact, we're going to talk my favorite. Okay. So I've been a teacher who's taught in this field. I've lost many students. Right. And that is incredibly difficult. But it makes you think and makes you think about every single moment. Right. And honestly, it might make you a little paranoid about some things. It makes you think about every single moment, and that's the benefit of it.   01:15:20:17 - 01:15:42:12 Trina Allen It gives you perspectives. And I had a student the first year that I taught in this other segregated class, and there was a group of intellectually disabled students, 18 students, many who were multiple disabled, and that was before I had the reverse inclusion program. But there was one student who was incredibly medically fragile. He had he had a birth injury.   01:15:42:12 - 01:16:04:21 Trina Allen There was parts of his brain that no longer worked, and he had a heart situation in which his head could never go below his heart like, wow, multiple things. Right? And he did have a nurse. And I was worried because he had such a different understanding of the world. And 90% of what we were doing was sensory based.   01:16:04:23 - 01:16:35:15 Trina Allen Right. And care, support, care, like making sure all of his medical needs were attended, making sure all of the things that he needed done daily were being done. And then for the education piece, we're talking about cause and effect. And so would I be able to support him in such a busy classroom and his parents had to fight with lawyers, fight to get him placed in a segregated classroom at that level versus a care classroom at the county level.   01:16:35:16 - 01:16:36:14 Erin Croyle Wow.   01:16:36:16 - 01:16:58:13 Trina Allen They had a fight. I wish I'm not I'm not going to say who they are, but without asking permission first. But in any case, they did. And they're amazing advocates and I love them. He used a wheelchair that was specifically made for him, and he liked to spend in that wheelchair. And then he would smile very slowly. One side of his mouth would smile.   01:16:58:15 - 01:17:19:06 Trina Allen And then if he did that, he had a dolphin. He liked the sound of that made a squeak noise. Then he would stick out his tongue and he would smile. So in my classroom, in order to ingratiate him into every single activity, the kids get this idea that he has to spin, of course, to to join the court, and then we need to do the dolphin.   01:17:19:07 - 01:17:39:13 Trina Allen And so every single transition, it was like this thing of who gets to spin him for cooking, for making a cake. He was going to put the mixer in his hands. He can feel the vibration. Who gets to do it? It was like the joy of the entire classroom of who gets to participate with him. And he loved it because you got all this sensory input.   01:17:39:15 - 01:18:05:13 Trina Allen And by the end of the year, it wasn't like I was having to integrate him into anything the class already did him, and he did pass away that summer and it was he graduated though. yeah, right. Like and so he, he passed away that summer and I, I was like, how am I going to leave my class with options?   01:18:05:15 - 01:18:11:06 Trina Allen Like I went from not knowing how to integration to not knowing how to run a class without him.   01:18:11:08 - 01:18:11:22 Erin Croyle Right.   01:18:12:02 - 01:18:49:00 Trina Allen Because multiple levels of ability in a space make that space inclusive. Now, unless that person themselves either directly or indirectly tell you they don't want to be there. Right. Like personality type matters too. There might have been some kids like a don't touch me with that, you know? Right. I wasn't him, but I think it's really, really important that we take personality and perspective and desire involved in all of these things.   01:18:49:00 - 01:19:09:14 Trina Allen That's the primary. You know, listen, that deep listening, that understanding of allowing people to be themselves really means that. But also don't let it be because the environment sucks. Don't let it be. They don't want to be there because environment sucks, right? Like, don't let it be that. And if it is that, figure out a way your plan and your map for fixing it.   01:19:09:16 - 01:19:16:15 Trina Allen But no, there's no one. What person needs to be segregated from a family at school? So who needs to be institutionalized then?   01:19:16:17 - 01:19:45:04 Erin Croyle That is such a powerful story and it speaks directly to my next question, which is how do we shift mindsets on a more global level? Because one of the things we encountered time and time again are parents who do not want their non-disabled children to share classrooms with students who have intellectual developmental disabilities or behavioral challenges or anything like that.   01:19:45:06 - 01:20:04:09 Erin Croyle How do we shift that mindset and show the benefits of I mean, you and I know how important it is because we know in our lives how how much it's it's changed for the better by being around people with disabilities and how much a better society. So how do we help foster that mindset shift?   01:20:04:11 - 01:20:26:16 Trina Allen I like that you put it like that. I part of me, you know, The fighter in me is instinctively like what? To demonize and be like, Well, and that's why I don't tolerate hate speech. And that is why, you know, and of course, that doesn't help, right? They were raised in a society that is based on productivity. They were raised in an able society.   01:20:26:16 - 01:20:58:14 Trina Allen So of course, they had these viewpoints. The truth of the matter is, until we get to a place in which my liberation is bound up, in your liberation, truly intersectional, there's nothing to say to those people when those people are wanting to be bullies and to be mean. However, not every single one of them is. So many of them are misunderstood or just raised in a society in which they don't know anything about disability and they are just scared.   01:20:58:20 - 01:21:26:17 Trina Allen So the main shifts that they have to make is based on humanity and treating people like a valuable and not expendable or disposable going forward. From there, what I do think and what I work with parents and I do to expose those, I'm not going to demonize them. I'm going to work in my my heart, but in my mind and in my understanding of the world, I'm not going to demonize them.   01:21:26:17 - 01:21:53:23 Trina Allen I'm going to try to figure out ways in which I can help them move towards where what we need. And in that what that looks like is telling them two things or several things, really. But one of the things is that disability affects us all at any time any of us can become disabled. And the reality is the longer we live, the more likely that's to happen.   01:21:54:00 - 01:22:16:13 Trina Allen Your child may have a disabled child. Are you giving them the skills that they need in order to help them? Your child may work with disabled people. Do they know how to interact? What are they going to do in the future? And sort of demystifying the idea that disability affects this one person this one time and it's like your entire life.   01:22:16:15 - 01:22:50:07 Trina Allen The longer you live, the more likely you are to be disabled, first of all. And secondly, and most importantly, I think, is that children do not learn in a linear fashion. Well, we might want curriculum to be systemic and built upon the last lesson for sure. I very much believe that children learn in so many multiple ways and having more typical abilities demonstrated having multiple access.   01:22:50:07 - 01:23:14:23 Trina Allen And we're not just talking about, you know, an easier task. It might be a harder task, right? We're talking about all that universal design that allows every child to move to the next thing. How could that possibly harm your child? Do you think that because your child is in seventh grade or first grade or fourth grade, that that's all they are capable?   01:23:14:23 - 01:23:40:18 Trina Allen Or are you making your child that way? Right. Because they might be at third grade in art or we're just making these numbers up. The education bill hasn't been that low, you know, but around that level, for us to really have a deep understanding of it, you're limiting your child if they're just getting this one little narrow understanding of what lessons and what standards they're supposed to be working on, you're limiting your child.   01:23:40:20 - 01:24:10:08 Trina Allen Give them expands, expand that world, allow them to learn more and critically think right. It is more complicated to make a multi ability classroom. It provides so much nuanced instruction for your family. Your child gets to learn all these different things, all these different levels, and they also learn how to be a good human. They also learn how to love themselves.   01:24:10:10 - 01:24:37:03 Trina Allen Because I think that one of the saddest things is, especially for the non obvious disabilities, is that for those of us who are in fact there are divergent, we learn real quick that we are not what is expected. And you don't know. You think your child, you think your child is neurotypical. You don't know that they'll let you know later on.   01:24:37:05 - 01:25:01:09 Trina Allen And I think that having a welcoming, loving environment in which all aspects of children are welcomed and focused on is never going to hurt a kid. It's never going to hurt a kid. And quite frankly, as a teacher who's in it 24/7, there are so many kids who are not on my caseload that need me there that I'm spending a lot of time with.   01:25:01:09 - 01:25:27:03 Trina Allen You know, like it's not like it's just a couple. Right? And it might be the very parents that are like, I just wish you were focused on teaching and blah, blah, blah. And I'm like, I see your kid more than right. You don't know. You're not in the classroom, you don't know. But I do know that everything that I'm going to offer is going to be targeted to whatever those kids need.   01:25:27:05 - 01:25:29:11 Trina Allen And you should be grateful for that great relief.   01:25:29:13 - 01:26:01:15 Erin Croyle Yeah. I think that, you know, in my experience as an advocate, as a parent, as someone who tries to be as involved as possible, I just can't stress enough that one special education is a service, not a place. You know, we cannot get rid of it. Maybe the name is flawed, but all students benefit from it. You know, I think back to some of the accommodations I request for my son, like a beanbag chair or something like that because of low muscle tone or needing a break in a corner.   01:26:01:17 - 01:26:06:01 Erin Croyle I can't think of a student who does not need a break in a corner during the day.   01:26:06:01 - 01:26:30:05 Trina Allen Thank you. And God, we can talk about this like so. One of the one of the challenges of working in a district previously, not currently, but my previous district, It often felt like I was frustrated in a lot of ways, like I could get this if I didn't do this. That sort of working within segregated system makes makes you fight.   01:26:30:05 - 01:26:54:12 Trina Allen Certain battles are street battles, you know. Right. So you use what you have. So if you have lawyered up parents and this sounds manipulative that is all get out and I don't mean this but if you have lawyered up parents and they are my kids getting what my kids get and they have that behind them and you think I'm not going to benefit the kids in my class who don't have that privilege?   01:26:54:14 - 01:26:55:07 Erin Croyle No.   01:26:55:08 - 01:27:16:03 Trina Allen Are you kidding me? I'm going to exploit the heck out of it. And I cannot tell you the accommodations that I ended up getting for kids that didn't have that in their IEP because I had a kid that did right. I wanted music therapy for this one kid so bad I can taste it, needed it wanted it, couldn't get it.   01:27:16:05 - 01:27:27:10 Trina Allen The other parent would like. Some hardcore advocate gets it and says, you know, I'd like to have it for the whole class. Gets it for the whole class.   01:27:27:12 - 01:27:29:11 Erin Croyle How I want to know how.   01:27:29:13 - 01:27:53:16 Trina Allen Tell me that parent is super lawyered up in the district in this particular situation. The districts, did it provide faith and there was a settlement and you do what you will with that reason. Yeah, but for an entire year, actually longer than that, until he graduated, we did this thing where he got to lead because he needed leadership skills.   01:27:53:16 - 01:28:13:19 Trina Allen And so we wrote that in for the music therapy. So she did music therapy as a whole group that he helped lead it. It was so great. And then everybody got to do it right. And he had leadership skills, you know, And then like, it was so pretty. It was just what any to look like It was so it was so pretty.   01:28:13:21 - 01:28:33:12 Trina Allen And I could never, as a teacher have gotten music therapy for this particular kid that I wanted. I want to for everybody. But, you know, there are some kids are like, do what he does with those keyboards. I don't know. You know, So it's like an and again, it's like looking for that deep ways of communication, you know.   01:28:33:14 - 01:28:57:15 Erin Croyle Well, it's interesting because one of my questions was going to be what can we do as advocates to ensure that what we're doing for our own children are helping others whose caregivers aren't able to advocate at the same level, don't have the resources? You know, you see it every day. And I know that every time I go in there for anything I advocate for for my son, unless it's something super specific.   01:28:57:21 - 01:29:09:04 Erin Croyle Yeah, I make sure I say that. Listen, this is not just for him. I see this as a need for all students. How can we make access to extracurriculars easier? How can we do this? How can we do that?   01:29:09:06 - 01:29:35:17 Trina Allen So systemic change is where that ultimately lies. I think personality can do a lot, but then when that person is gone, then it's like falls apart, right? So systemic changes where it needs to happen. However, that being said, you letting teachers and letting service providers know that your intent isn't just for your child, your intent is to push for all kids.   01:29:35:17 - 01:29:58:14 Trina Allen Inclusion, I think, goes a long way in letting them know how safe they feel with you and what they can say to you and what you can ask for based on their recommendations. There was a lot of side conversations that I had with parents and in my boss and saying, Hey, these things, you know, these things. I think that that's the first thing you can do and also know your position ality and privilege.   01:29:58:20 - 01:30:32:07 Trina Allen Explore what it might look like being advocate. If you've got legal skills man, share that. I have one parent and I think is a great example who went through the conservatorship process. And again I know I don't love the conservatorship process and have all kinds of reservations about taking control of someone else's life. And in the idea of medical need for a child who is non speaking, it can be terrifying when it's 2020 and there's no vents available.   01:30:32:13 - 01:30:49:19 Trina Allen You know what I mean? Like, yeah, right. There's some real world things in which we've got to navigate harm reduction. And she always said, like, I went through this process and I did it myself. It would have been really, really expensive. But I did it and I have backup so I can give it to everybody. As a teacher, you got curriculum, Share it.   01:30:49:23 - 01:31:19:04 Trina Allen Yeah. Don't keep stuff. Intellectual property, I guess. And student need though, comes first. I think as a parent, if you've got skills and you can replicate it, do it. What you're doing right now. Podcast Letting other people tap in and giving them an open idea of cool teaching could look like inclusion, can look like being a futurist in that you don't allow the systemic criminal to stop you from dreaming of what you know it can be and keeping your eye on the prize.   01:31:19:04 - 01:31:41:08 Trina Allen What you reduced all the way through it is fine. Those are the things that we need to do. But I do really think it's literally telling, saying what you just said to the providers you work with and saying like, my intention here is first and foremost my child, of course. But first and foremost for my child for me means that every child.   01:31:41:10 - 01:31:41:23 Erin Croyle Right?   01:31:42:01 - 01:32:06:01 Trina Allen I do. What do you need to. Right. Question. Right. That's what I try to tell folks. I work with. And also just those things that benefit the whole class, to benefit the whole school that like you said, you taking on extracurriculars. My God, I cannot tell you until I had the reverse inclusion program how painful it was to all of the high school events.   01:32:06:03 - 01:32:34:02 Trina Allen I had to go or they cut it. And while I'm down to go, let me tell you, it's a lot. Yeah, right. What? I have my own. My own child can be every Friday. You want to go to a football game? I'm sorry. I can't take you every Friday. Right. And then also, like going to the dance when I was 25, it was one thing, but I'm rapidly approaching 50 in a couple of years.   01:32:34:02 - 01:32:42:20 Trina Allen It's not a thing anymore. I'm not relevant. Like you don't want to hang with me. I didn't have all the kids that knew them and so they would just go. But it wasn't fun.   01:32:42:22 - 01:32:44:17 Erin Croyle Right?   01:32:44:19 - 01:32:55:07 Trina Allen That's not inclusion. The fight for extra curriculars and all those things is equally as important as it is for academics.   01:32:55:09 - 01:33:22:12 Erin Croyle Absolutely. And I think having a strong IEP that can then be carried on to school sponsored activities is critical because of all of the components. And I think to you know, I want to go back to the mindset shift when we're thinking about parents. And I think that inclusion I so often and especially lately, there's just this push about how inclusion is expensive.   01:33:22:14 - 01:33:51:00 Erin Croyle You know, someone shared a blog with me where they cited the flaws of inclusion in and one of the examples they use was the first grader shooting the teacher in Virginia a couple of years ago. As if inclusions to blame for that, It's not you know, inclusion is critical for us to advance as a society. And so I.   01:33:51:06 - 01:33:52:20 Trina Allen Got out of that child's hands.   01:33:52:22 - 01:33:58:05 Erin Croyle Right. Right. It doesn't it's not because that child is in school.   01:33:58:05 - 01:34:00:09 Trina Allen It's it's because that child didn't get what they need.   01:34:00:10 - 01:34:02:01 Erin Croyle It is because.   01:34:02:03 - 01:34:17:02 Trina Allen The child didn't get what they needed. The child would have been in school. Unless you think that they should stay at home with their parents because we go back to that. We can go back to segregation by race. We can go back to segregation by ability. We can go back to segregation if you want to live in that world.   01:34:17:03 - 01:34:29:20 Trina Allen And I don't know, like the answer to that child is that child needed a lot. That child needed a lot. And it's not the inclusion teacher that.   01:34:29:22 - 01:34:33:10 Erin Croyle Just the school. Everything else is that child's right.   01:34:33:13 - 01:34:53:21 Trina Allen It's everything in that child's life. And let's talk about placement. When kids are getting what they need, that they're in a placement. That's not inclusion. That's not what we're advocating for. So you're just talking nonsense now, because if it wasn't actually inclusion in that child would have been getting the support that they needed both at school and at.   01:34:53:23 - 01:35:06:10 Trina Allen Yeah, that's just and I forgot the logical fallacy that that's the name of it is. But that's it's a logical fallacy. You're using it as an example, a fear mongering example that has nothing to do with anything real.   01:35:06:12 - 01:35:29:07 Erin Croyle Well, let's go broader. That's a very specific example of something kind of extreme. But in a similar vein, the students who throw desks and mice are not all these kids even have IEPs, right? They get it cited as an inclusion issue, but it's really just a kid. So you have kids that throw dust, that bite, that whatever. And so you have parents saying, I inclusion isn't working.   01:35:29:07 - 01:35:33:22 Erin Croyle Okay. So what is what is your counter to that? Who is someone deeply involved?   01:35:33:24 - 01:35:57:07 Trina Allen my counter to that is that I don't believe in the school to prison pipeline. So what happens to those children who throw desks? First off, those children who throw dust are deeply traumatized. There is no neuron type that throws dust. That's a thing. There is a child in trauma who is responding in a manner that fits their current situation right?   01:35:57:09 - 01:36:24:17 Trina Allen So there is no neural type that bites. That's not a thing that is a person in distress. So we can just institutionalize everybody who doesn't behave. We'll have lots of prisons. Now, that's not the world in which I want to live. That child goes somewhere. Where do they go? Do they go to a classroom with everybody who is in that same level of trauma?   01:36:24:19 - 01:36:45:03 Trina Allen Because that works. Ten kids with that same level of trauma in a classroom segregated by themselves with no outside intervention and no sense of inclusion or belonging. No, that doesn't work. That's not what that child needs. And we've already failed that child. Let's talk about it. By the time they're throwing does so, by the time they're fighting something that's already happened, there's already been a breakdown.   01:36:45:05 - 01:37:10:21 Trina Allen And so it's about one repairing that. But also, your child is still going to live in the world where there are people who throw desks, regardless of whether they see them or not. And they're still going to be responsible for them collectively as a culture. Right. We're not going to deal with a culture that is radically supremacist. That child wasn't supported in the moment.   01:37:11:01 - 01:37:45:15 Trina Allen Let's figure out how to do that safely. I do believe your child's safety. I do believe that every child safety, not just a job. And I think that safety looks like figuring out situations before because it didn't go from nothing to buy it. Right. Okay. It didn't go from nothing to fighting. So figuring that out first and making sure that those environments are appropriate and providing all the support that that child needs, first off, second off repair, what does that look like for a child with say, who?   01:37:45:17 - 01:38:11:12 Trina Allen Let's say something less inviting. Let's say screamed at the teacher and walked out of the room and slammed the door. So they get suspended. They go home next day in class. It's easy because they're not quote there. What did that do for anyone? They're literally nothing. What did it do, though, when there's repair between the child and the teacher and the child and the class, they learn how to communicate their needs.   01:38:11:12 - 01:38:34:21 Trina Allen They learn how to communicate their wants. They learn how to communicate their frustrations in more appropriately, others. The ways in which that we can have can set. They learn how to repair when they harm, right? They learn how to take accountability for that in the classroom. And the teacher learns how to take accountability for what went wrong in the moment beforehand to this is what your child needs.   01:38:34:23 - 01:38:49:06 Trina Allen This is what every single person needs. Think about your relationships as a husband or as a partner or as a mom. For all the ways in which we friend we relate with each other. How many times did you not know how to repair a relationship?   01:38:49:08 - 01:38:50:10 Erin Croyle Yeah.   01:38:50:12 - 01:39:25:09 Trina Allen How many times did you not know how to fix the harm that happened? This is where our real lives are found. And again, throwing death and biting. And that sucks. It sucks. It's scary. It's hard. I've certainly done it multiple lives, dealt with that. But the harm, the real harm happens after the fact. The real harm happens in the seclusion and exclusion of those people, because we learned that when we for we can't fix and we learned that when we are harmed, there is no repair, there is no comfort.   01:39:25:11 - 01:39:52:08 Trina Allen Right. Because what did those kids in that classroom need when the bad thing happened? We don't know. We don't care. When we talk about the costs of inclusion, we don't talk about the cost to our humanity. If we don't, every single time we exclude somebody, we are losing an opportunity to learn how to treat another human being as valuable and not disposable.   01:39:52:10 - 01:40:15:24 Trina Allen That doesn't mean that every kid is going to be happy in one particular placement. I am never going to advocate for that. There are people that are like, Yo, I need to be at home. I'm not going to tell you who you are, not going to tell you who you are. I don't want it to be though. I want to be at home because you never understood me.   01:40:16:05 - 01:40:28:02 Trina Allen Yeah, right. And that's a tricky balance of figuring that out and noodling through that and working through that. But I will say that every single kid deserves that.   01:40:28:04 - 01:41:01:19 Erin Croyle As an educator, though, tell me this. We keep hearing about more of these sort of disruptions happening more often. And I've heard from educators who've said, I don't know how to handle it or I'm not getting the support to handle it. And it's making it very hard to manage my classroom. So as an educator who's in it, who advocates for all of it, what can we do to fix that part of it?   01:41:01:21 - 01:41:26:05 Trina Allen gosh, those things are real. I mean, I jokingly said, if you're a teacher and you can't take a punch, I don't know what you can do. And that's not fair. Yeah, you shouldn't expect, right? This is not a society. But I do think that support one another. Being loving and kind is important. So when harm happens surrounding it, why do we have to have systems and processes for it?   01:41:26:05 - 01:41:48:23 Trina Allen So draconian measures like suspensions and in-house suspensions at lunch detention and all these, it would do nothing. We do nothing when it's trauma, if it's just naughtiness, I guess because they don't want the bad thing, they'll do the other thing because they have a choice. But when it's trauma, they don't have a choice. It just doesn't work. So then it ends up being the same five kids, right?   01:41:49:00 - 01:42:10:09 Trina Allen And usually that's based on race and ability. It always goes back to that. Right. So the draconian things don't work. What do we do? We have systems of repair. We have restorative circles that built into our day. We have ways in which we can work together. And we don't wait.   01:42:10:11 - 01:42:11:10 Erin Croyle Right?   01:42:11:12 - 01:42:34:08 Trina Allen We don't wait till that desk is through. Right? We listen to when a kid has an IEP, we actually follow it first off. And if it doesn't have IEP and I see that they're upset, I'm going to deal with that. I'm going to deal with that and not say it's not my job. And the dealing with it needs to be explicitly taught.   01:42:34:10 - 01:42:59:23 Trina Allen Listening to children, having time to listen to children, having enough counselors, right. Having repair circles, really addressing and digging in what that need looks like and having a culture of accountability and that like you don't just ignore meanness when a child is fearful. We're really to talk about this. It is not just going to be a contract between you, the kid, the parent and the kid that was bullied.   01:43:00:04 - 01:43:27:03 Trina Allen This is not what we're doing. We are doing it. We're opening it up and we are being honest about where we are. And I know that teachers are overwhelmed. I have been overwhelmed. But I also feel like the 99% tool belt that I could give any teacher is rapport. You will never teach content until you have rapport. You will never teach content until you have their trust.   01:43:27:05 - 01:43:41:21 Trina Allen You will never gain their trust until you have good rapport with them, until you have shown them time and time again. You are a safe person. And I think that that should be the focus of a lot of our education rather than some of the hoops that we go through.   01:43:41:23 - 01:44:05:12 Erin Croyle Yeah, and I really want to add thinking about the mindset shift and thinking about seeing students at any age and I mentioned this before I speak to college students about inclusion and inclusive practices and universal design for living and learning. And one of the things I mentioned is you know, look around you and think about what you need in your day to day.   01:44:05:12 - 01:44:18:15 Erin Croyle Think about conformity and think about what we try to shut out of our lives. Like you mentioned with Ada, you know, it's like something is wrong with stimming when stimming is something that actually brings comfort to people.   01:44:18:17 - 01:44:20:12 Trina Allen We talk about that like.   01:44:20:14 - 01:44:20:19 Erin Croyle You.   01:44:20:19 - 01:44:57:13 Trina Allen Talk about the fact that I had a student many, many years ago who did this particular stem, and she did a lot. And I do it now usually when I'm alone. But like it is so stress reducing. And I never I was never a teacher that said that stemming all of the things that I was dealing with, especially in that placement like that was not one of them, but the pure joy I would have been stealing from him one And then also like, thank you, I want to give him some like that's 20 years later because thank God I had that at my worst moments.   01:44:57:15 - 01:44:58:02 Erin Croyle Right?   01:44:58:03 - 01:45:00:16 Trina Allen Yeah. No, it's just like, not.   01:45:00:16 - 01:45:28:06 Erin Croyle Always exist in the same ethos, you know? I know when I was in school, like I needed to click something or. Yeah. And so for students taking a test, if the clicking a noise, you bring in earplugs. We need to know that the world is not going to be our perfect little conformed bubble. So instead of making someone who has to make noise, be quiet, let's all adapt to help us all be who we are in our own.   01:45:28:08 - 01:45:40:00 Trina Allen Let's teach kids to know that about themselves. So like, I really do need it quiet. So let me be the here. I'm going to advocate that I have a I, I don't I even I'm going to advocate that I have a quiet testing space.   01:45:40:05 - 01:45:41:12 Erin Croyle 5044.   01:45:41:14 - 01:46:18:02 Trina Allen 504 Thank you. And I'm so mad. That even has to be about why can't I say hi? I really struggle with it when it's loud in here. I go in the hallway. Okay. Yeah. So whatever. Like, it's not a problem. We need to think about trusting children, first off. Yeah, Trusting children. And also when you can say yes, do when you can say yes, do When you have to say no, mean it When it's something that is really not okay.   01:46:18:04 - 01:46:41:15 Trina Allen Let that be truly not okay and address it. Don't just walk over it when real harm happens, when real bullying happens, when real abuse happens, really acknowledge it. Not just in the moment. Jump in three weeks later. Yeah, Have time for that deep repair. Transformative. Let's change the culture in which this is created is really what we're talking about.   01:46:41:15 - 01:47:05:18 Trina Allen And then being allowed for those accommodations, trusting kids to know what they are and teaching them all the options for that. Right? Letting it be like a menu, like I really do better with this, this, this. We all learn that, especially if we make it past high school and go to college. All you hear from college students is like, I need the music on or I can only study in black ness.   01:47:05:24 - 01:47:18:24 Trina Allen I need to be dark with my just my computer, you know, whatever it may be. You learn all that and it's only the privileged folks that end up there right. Which are all going to use that in their brain.   01:47:19:01 - 01:47:44:06 Erin Croyle Yeah, it's interesting. I remind myself and I remind my family and whomever to write, especially with neurodiversity and realizing the the quirks that come with it that sometimes you have to look at intentions, don't look at what has happened, look at the intentions, at the intentions are well-meaning, then give people grace. And that applies to students too.   01:47:44:12 - 01:48:10:17 Trina Allen I totally agree. I will always talk about impact, right? I will always talk about impact. Because even if you didn't mean to hurt somebody, you did it. It matters. And intention matters to absolutely. Intention matters to when someone is just their stem is to clap the table. Really loudly and I can't talk over it. Yeah, I'm probably going to have to.   01:48:10:20 - 01:48:13:10 Trina Allen We're going to have to negotiate the system in a.   01:48:13:10 - 01:48:14:24 Erin Croyle Pillow forum debate. Yes.   01:48:15:03 - 01:48:49:01 Trina Allen Nothing. Right. Exactly. We're going to figure out a way to, you know, exist together yet exist together. And if the intention is to be irritating, I'm going to want to know what both of those situations, the why matters and the why informs the how. And it should always be that. And neither of those kids, the kid that's banging on the desk to disrupt and the kids are banging on the desk because it does really go to the base of their hand are both valuable members of society and need to know how to get those things out.   01:48:49:02 - 01:49:10:04 Trina Allen And when. The intention on your end is to just control the situation rather than meet whatever the underlying needs are, You lost the loss and you're going to be a bad teacher. You know that. You know, bad teachers always talk about that. You just approach it. You know.   01:49:10:10 - 01:49:17:02 Erin Croyle I think we all go through phases of that in our lives regardless that teachers or whoever. That's hard.   01:49:17:04 - 01:49:18:16 Trina Allen But yeah.   01:49:18:18 - 01:49:37:11 Erin Croyle Yeah, I mean, we've been talking forever and I could honestly talk to you for hours more and maybe we will one day, but I want to ask one more question. Hopefully just one more. Trina If you could create inclusive public schools with a magic wand, what would you do to make that happen?   01:49:37:13 - 01:50:16:03 Trina Allen Well, on the macro level, I would end imperialism, white supremacy on the macro level, I would end genocide. On the macro level, I would teach people that humans are not disposable in any way. On the macro level, all those things are true and that is where I need to stay. If I want to stay in this field and I do.   01:50:16:05 - 01:50:56:21 Trina Allen So I got to keep my mind on the future. I got to keep my mind on that. The next thing, the more immediate is that we need we need to fund schools. We need to have less obsession with a standard and more support provided. Because when kids are dealing with a housing crisis, when kids are dealing with systemic racism, when kids are dealing with the fact that their parents don't have money or time to even do basic things.   01:50:56:21 - 01:51:28:02 Trina Allen So this school is going to be the place where all of those things happen. The school is now more of a mental health triage than it is just a place of academic understanding. When those things are true, we need to keep our eyes on the macro level of like, we're not going to fix this in this moment, but if we are looking forward to those things, we're looking forward to people actually mattering for inclusion to be real and by extension, people of all abilities, disabilities.   01:51:28:04 - 01:51:59:07 Trina Allen I really believe that focusing on meeting each support need regardless of disability, is super important, that that rapport and humanity comes before content and. Once that is established, content becomes interesting and fun because you learn who they are and they learn who you are and they want to learn from you. They want they want this information that 10 minutes ago they were like, That's stupid.   01:51:59:09 - 01:52:17:14 Trina Allen I hate math, or, you know, whatever it is, I just very much feel that that needs to happen. And teaching needs to happen. There cannot be the co teaching model of special ed teachers being the support. It can't be that curriculum is to be created. There needs to be time for that. There needs to be time for repair.   01:52:17:16 - 01:52:38:07 Trina Allen There needs to be time to assess what you're doing. And is it working for the kids that don't have IEPs that they require a lot of support, understanding that they're your children to write them for the kids with IEPs that need a lot of support, that they're not getting understanding. It's hard that I don't know what to do about that.   01:52:38:09 - 01:52:51:13 Trina Allen That's really hard. That is the piece that kills me when I have a kid that has one that has the support that they need, that they're not getting at, that is still out about it, I guess.   01:52:51:15 - 01:52:54:00 Erin Croyle Because there's poorly trained staff and.   01:52:54:02 - 01:52:57:05 Trina Allen Or there's no staff, they're relegated and they don't have it.   01:52:57:07 - 01:52:59:17 Erin Croyle Yeah, yeah.   01:52:59:19 - 01:53:25:24 Trina Allen Pay teachers better. Sorry. I mean, that's true. That's true. Here is my work staff, my God, if you want to talk about able ism, the people who were closest with the kids experience it as a bystander because they they get ignored, thrown around as if they don't matter and they directly impact our students.   01:53:26:01 - 01:53:43:17 Erin Croyle What you mentioned is a philosophy focal level I think on on on an actual like policy level and in action level, what I hear is and what I get personally experience based, you know, to to achieve what you're saying. We need to pay the Paris support.   01:53:43:19 - 01:53:44:08 Trina Allen Yes.   01:53:44:08 - 01:53:45:16 Erin Croyle Living wage.   01:53:45:18 - 01:54:08:21 Trina Allen Paris need to be the living wage. Yes. We need to value that. So it's access. It's always about access, right? In my last job, they couldn't come to any of the meetings. And as a that was teaching a segregated class because transportation wouldn't change. I couldn't go to the staff meetings of my school and they could never they can never go.   01:54:09:00 - 01:54:33:00 Trina Allen In fact, in the 14 years that I worked and the same school, same classroom, I the same para Mindi and I know she does not care. She 100% wants me to say her. India's fabulous Mindy been there longer than any admin. Multiple admins who had been there for several years didn't know her name. You see her, but you don't because you don't come to my classroom.   01:54:33:00 - 01:54:47:20 Trina Allen Second But also she has dedicated her life for a pittance. She has dedicated her life. I could not 300 not do my job. Right? Right. She is my co teacher.   01:54:47:22 - 01:54:48:16 Erin Croyle Right?   01:54:48:18 - 01:55:12:19 Trina Allen She is my co teacher and she is treated like that. But if you want to ask anybody on campus about someone's IEP, you're going to ask her, right? Because she. No, she implements it when I am not there. She teaches my because, you know, that's I don't know any I mean, no shade. It's hard. But God blesses us, you know, like that's not an easy job.   01:55:12:21 - 01:55:15:13 Trina Allen But like, they don't know. They don't know. They don't know.   01:55:15:13 - 01:55:17:11 Erin Croyle Possibly for a sub to know. Yeah, right.   01:55:17:12 - 01:55:46:17 Trina Allen It's impossible. What is your mole having a seizure or Sally. Shouldn't it have apples. Because that you know, all the fate of of things. That's what parents know and the ways in which they have no support and no agency directly shows you how close they are to the student. It's like it's able is and by extension, the farther away from disability you are, the more power you get.   01:55:46:22 - 01:56:02:20 Erin Croyle I've never thought about it that way, but what I do see is that a really good pair of one on one to ESP whatever you call. Yeah. Makes all the difference.   01:56:02:22 - 01:56:05:01 Trina Allen     01:56:05:03 - 01:56:06:18 Erin Croyle All the difference.   01:56:06:20 - 01:56:07:04 Trina Allen Yes.   01:56:07:08 - 01:56:26:16 Erin Croyle And so I can't help but think if we were to be able to train and hire and pay folks what they're worth and how we value that, it would have the biggest impact.   01:56:26:18 - 01:56:49:11 Trina Allen my God, Yes. You have no idea that that would be every thing. When I worked at that first job, I had a supervisor who talked about wanting to change the whole dynamic of the environment and he had this great idea. He was like, We'll teach modules, we'll teach these big modules on trainings and people, whatever module they are on.   01:56:49:11 - 01:57:14:24 Trina Allen So they'll get paid at 42. There's some like interactive learning, right? Like some textbook type setting. But then in order to pass module, you would have to teach it to somebody else in your department. That's part of it. You would have to co train somebody and then you pass that module and now they are able to start the module that you just pat me.   01:57:15:01 - 01:57:36:22 Trina Allen So it's like this rapidly expanding, you're benefited by someone else. Next to you doing better, of course. And then multiple people learn, right? So even the people that don't want to move up the modules, they still learn because they're helping their buddy out. It was so smart. I was like, Why can't we do that? And also, no shame that my master's program was trash.   01:57:36:24 - 01:57:54:15 Trina Allen I didn't learn to be a teacher in a classroom, right? But I listened in. I learned to be a teacher in a classroom. I taught it by seeing other really good teachers. A lot of them were peer educators or whatever that lingo is. There were support staff and they were amazing. And I learned to be a teacher through them.   01:57:54:17 - 01:58:11:14 Trina Allen And my students guide my biggest teachers of students. Always, always that that apprenticeship. Why could that be a thing? Why are teachers who are doing good or making a huge difference? Why is it so isolated? Let's capitalize on that sense of people over what job.   01:58:11:16 - 01:58:12:00 Erin Croyle Right?   01:58:12:02 - 01:58:17:14 Trina Allen Apprenticeship. Well, if you have amazing career educator having trained some folks.   01:58:17:16 - 01:58:37:23 Erin Croyle I think it's funny. I love that you said this because I feel like this interview is never going to end and I'm okay with that. But I love that you said that because as someone who studied journalism and communications, I learned everything as an intern in a newsroom.   01:58:38:00 - 01:58:38:07 Trina Allen Know, you.   01:58:38:07 - 01:59:08:19 Erin Croyle Go And so here we are talking about public schools and how important education is. But also, I think it's really important to acknowledge that you can have a doctorate in whatever. That's great, but that's a level of privilege and you're not actually learning truly what is happening unless you're out there doing the work. The best to the best people that I've seen my son work with are the ones that are out there doing the work every day.   01:59:08:19 - 01:59:15:22 Erin Croyle It's not about a master's or a doctorate. It's about your passion and the work you're doing and what you're learning in the field.   01:59:15:24 - 01:59:18:19 Trina Allen 100% is about that is educational, elitist.   01:59:18:21 - 01:59:19:24 Erin Croyle Academic, ivory.   01:59:19:24 - 01:59:44:13 Trina Allen Tower. It's just it's nonsense. And while I love debate theory, I can do that all day long. I love talking about six essential things and big macro ideas and whatever. I love school the way for that. For the discussion aspect alone, I can have all of that. I can understand all the different theories of how education developed and ways in which to talk to kids and what ideologies come out of what theories and what they're based on.   01:59:44:13 - 01:59:58:24 Trina Allen And I can have all of that and it does nothing to help me when Sally has an accident in class and how to navigate that with her dignity, my own and everyone around us.   01:59:59:01 - 02:00:11:23 Erin Croyle Right. It does nothing to help you figure out how to talk to someone who has cerebral palsy, who has a very distinct dialect. You really have to get to learn to be able to understand them. But once you do, you can have a really great conversation.   02:00:12:00 - 02:00:25:09 Trina Allen Thank you. Those things are all valid. Those are valid, but that doesn't make them primary. What is primary is relationship and rapport. How to make yourself a safe space so that learning can happen.   02:00:25:11 - 02:00:26:12 Erin Croyle Connection.   02:00:26:14 - 02:00:51:10 Trina Allen Yeah. my God. And not on your own terms. There's so many adults who think that connection has to be on their terms. It's like if you aren't going out of your way to meet where someone is at, when you are in a position of power. And I don't care what any adult says, but little children, we live in a very aged society.   02:00:51:12 - 02:01:10:17 Trina Allen Children are infantilized in ways in which they don't need to be. In some ways they do, but in ways they don't need to be to be in a position of power, specially a teacher and not attempt to meet a person where they're at. And that connection is my opinion. Abuse of power.   02:01:10:19 - 02:01:33:22 Erin Croyle Every student. I'm sure you have a different way to connect with them. And so again, I'll go go to go to my son who really connects through silliness again. So the people who are able to try to understand him and laugh when he calls you Uncle, whatever. Yeah, they get to know him on a level that nobody else will and then actually see that he's very smart and funny and caring and kind.   02:01:33:24 - 02:01:36:04 Erin Croyle Yes, they go out of their way to put.   02:01:36:04 - 02:01:38:00 Trina Allen The I.   02:01:38:00 - 02:01:57:01 Erin Croyle That whole like adult authoritative and they learn to interact with him person to person. So the whole respect me by calling me mister Mr. John Doe is is ridiculous. The people who say, Hey, call me Walt. Hey, call me Trina.   02:01:57:03 - 02:02:18:10 Trina Allen Come on. Yeah. It's like you don't need to abdicate your empowerment. It's like people are like, Well, you can give children all the power. And I'm like, my God. Is that there's a lack of power. We can all be empowered. Hey, people think the power needs to be hierarchical and the reality is that that's dangerous. Once power becomes hierarchical, it becomes problematic.   02:02:18:12 - 02:02:44:17 Trina Allen There are times in which I will use that power. When a child is running across the street and there is a car coming, you better believe I'll use my voice. You better believe I'll use my power to prevent that from dying outside of that hierarchical power doesn't really matter. Doesn't need it. We can both be empowered. And if my job isn't to squash you down and to show you how to, you have to become like me or like this ideology of who I think a person should be.   02:02:44:19 - 02:02:48:09 Trina Allen My my joy is in being empowered with you.   02:02:48:11 - 02:03:13:20 Erin Croyle Your example just then, is a perfect example of why for behavior. So you think about elopement, which can be very confusing. I was able to really understand it better when I stopped yelling Stop and I quietly followed and gently put a hand on his shoulder and said, What's going on? Yeah. When you stop to listen in, interact instead of barking orders.   02:03:13:22 - 02:03:39:01 Erin Croyle And I think it's really important, especially with kids with disabilities, that require more attention and more care. They don't have much authority over their body or themselves. how putting on a shoe. And you can't say that it hurt you, the food that you're fed if you cannot feed yourself, what if you don't like it and you're not able to tell someone because no one's figured out how to listen to you?   02:03:39:03 - 02:03:55:06 Trina Allen The body fascism that we can talk about that for a long time. And I think that around bathroom issues it's so it's it's so needed. It's one of the biggest abuses that I feel like happened in public education. That is just unfair.   02:03:55:08 - 02:04:07:09 Erin Croyle Let me ask you this, Chino. We've been talking for almost 2 hours now, and I didn't even get to the question that I should have asked Mid-interview, which is where do life skills fall into inclusion?   02:04:07:11 - 02:04:29:05 Trina Allen yes. If you are teaching something that is straight up serious, that's it. You are doing your child a disservice regardless of what you're teaching. Life skills should be brought into the classroom, period. It doesn't just help students with disabilities. It helps every single kid. If you are teaching something about ratios and measurement and you don't bring in the cake mix, I don't know what is wrong with you because you just wasted something.   02:04:29:07 - 02:04:58:12 Trina Allen Yeah. Life skills. Who taught you how to figure out a mortgage? Nobody is so stressful, right? And you're like, even that. Why is there a tennis? You know, like, that's the level, right? That's the level I understood about life skills. Feel like that's a huge disservice. I feel like that's a huge disservice to all us when you can teach theoretical things and have a life skill aspect to it.   02:04:58:14 - 02:05:04:19 Trina Allen By not doing that, you're only not doing it for, in my opinion, those reasons.   02:05:04:21 - 02:05:25:24 Erin Croyle I Wow, thank you. Because it's funny, I didn't put the two together until this point, but I've often thought, why don't high schools have you know, back in the day they called it home economics, but you know, a basic class of cooking cleaning, scrubbing a toilet, sewing a button, bills, personal finance.   02:05:26:01 - 02:05:38:24 Trina Allen How to get Social Security disability. I mean, just a real world stuff. Yes. What to do when your medical thing denies you. You know, there are some things I needed help with.   02:05:39:01 - 02:05:49:16 Erin Croyle Yeah. I wish I could turn back the clock and have someone teach my 18 year old self or freshman year self of high school things that I didn't learn until I was 45.   02:05:49:17 - 02:05:53:01 Trina Allen What a capitalizing loan is right here.   02:05:53:01 - 02:05:55:15 Erin Croyle Very traditional versus Roth.   02:05:55:17 - 02:06:19:10 Trina Allen You don't even know that. And it's so boring to me because I don't understand the premise because I never learned it. And I think that, yeah, so all of those things, life skills needs to happen, all of those things at every level, whether that's basic bodily care all the way to, you know, budgeting with IRA, you know. Yeah, those are things that everyone should have absolute access to.   02:06:19:10 - 02:06:26:07 Trina Allen And I question the reason why we don't, you know, I again, I'm a systemic thinker and I think that those are very clear reasons why we don't.   02:06:26:09 - 02:06:38:05 Erin Croyle That's true because it is. I mean, even if you take disability out of it, it's also a systemic problem and with less privilege are the ones that could really use that information the most. So why aren't we finding ways to get it to them?   02:06:38:07 - 02:06:40:05 Trina Allen Because we don't want to because we don't want them to have that.   02:06:40:05 - 02:06:41:04 Erin Croyle We want to keep them there.   02:06:41:10 - 02:07:02:13 Trina Allen The system is it's wrong. No. 100%. I very much feel like life skills and also, quite frankly, their desires by the kids. In fact, that was the first thing I asked for this year. I was like, I don't care what what class or care what you y'all do, I'll take extra, you know, whatever I want a classroom with a sink.   02:07:02:15 - 02:07:09:12 Trina Allen We cook a lot, We cook a lot. What they like to eat. They're hungry. They like to do. They need to.   02:07:09:12 - 02:07:11:01 Erin Croyle Move hands on.   02:07:11:03 - 02:07:36:10 Trina Allen Yeah, You can do multiple levels of ability during cooking and physical activities like art projects and things like that. Universal design becomes easier when things become both applied and content theory like it. It's so much easier. Like it's time to learn about geometry. And I have everyone from a child who is identifying a one versus a two to a child that can do pen to us.   02:07:36:15 - 02:07:43:17 Trina Allen If I have that, then I'm going to build me some IKEA shelves. So we're going to talk about geometry.   02:07:43:19 - 02:08:01:12 Erin Croyle Thank you. I really personally needed that. It just made a connection in my brain. I have a hard time learning, sitting in it, sitting there, listening. I have to either doodle or whatever for my own neurodiversity. And so I don't think most people are designed to sit in a desk and listen to a lecture. So I don't.   02:08:01:13 - 02:08:03:04 Trina Allen Know, you know.   02:08:03:06 - 02:08:19:04 Erin Croyle Hence universal thinking. So full circle here. Life skills, Universal design for living and learning, inclusion. It's all interconnected and it really comes down to completely rethinking how we view our classrooms.   02:08:19:06 - 02:08:38:11 Trina Allen And what's the production, what we want. Like if we're going to have capitalist terms, what is the production, what are we trying to create? Are we really trying to create robots who can sit back and test scores? Is that really going to benefit society? Will that benefit them in the society in which they live?   02:08:38:13 - 02:08:48:19 Erin Croyle And also having children of many, many levels of ability allows them to learn the value of other people who.   02:08:48:21 - 02:08:50:19 Trina Allen Maybe they undervalue, because.   02:08:50:21 - 02:09:20:21 Erin Croyle Of the wisdom they've experienced. I see the empathy in my my, my middle child who is two years younger than Arlo. So, Emil, the empathy, he just exudes and understands. I and I think one, he was just born that way, but two, he and his brother have a bond because they've always been together. Amiel has no issue with kids, with, you know, he just he just is around them.   02:09:20:21 - 02:09:24:23 Erin Croyle And does he say the wrong thing On occasion, sure. But the intentions are always good.   02:09:25:02 - 02:09:51:11 Trina Allen Yeah, that is like the least. The idea that he is able to be sibling, like with anybody that walks into his space because he knows he doesn't have a preconceived expectation what an interaction should look like. He just sort of meets the person with her and does his thing and they do theirs and they do it together. Like that is something are locates like, you know, like he was open to it.   02:09:51:11 - 02:10:21:14 Trina Allen He received that he's a person that temperament wise and personality wise, that was like that's worth that. But that's also like something that are a little bit less labor that he didn't have to do it in so pretty when it happens. And there's no way to really articulate just how beautiful it is when something works really well and you're like, This isn't hierarchical, this is just humans being sweet and kind to one another and gentle and learning and growing.   02:10:21:14 - 02:10:36:07 Trina Allen And it feels really good. And when those moments happen, you're like, It should be like this all. It could be like this could.   02:10:36:09 - 02:11:06:21 Erin Croyle It could be like this all the time. Educator, advocate, activist Trina Allan concludes this two parter with something we all need a little bit more of. In our next episode, we're talking employment with self advocate Dorothy Clark. She opens up about her experiences as a person with a disability, navigating the workforce from her start in sheltered workshops to serving as a mentor and board member.   02:11:06:23 - 02:11:23:07 Erin Croyle Be sure to share, subscribe, like follow or whatever it is you need so you get a ping when it drops. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.    

Imagine being treated as a guest in your own school.  For many students, not only is that their reality - it's by design.  In part 1 of this 2 part episode, Erin Croyle and special education teacher Trina Allen break down what needs to be done to create meaningful inclusion in academics, throughout our school communities, and beyond.  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.      SHOW NOTES: Talia A. Lewis' Working Definiciton of Ableism. How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done. What is the Affordable Care Act? National Center for Education Statistics releases various annual reports and as well as topical studies.  More on the Ithaca City School District.  Inclusion benefits EVERYone. Learn more about the Individuals with Disabilities Education Act (IDEA).     TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's partnership for People with Disabilities.   01:00:39:04 - 01:01:08:18 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability can be. But we tackle the tough stuff too. Inclusion could be one of the most complex. As guest Trina Allen points out, students with disabilities are often treated as guests in their own schools. Trina should know.   01:01:08:20 - 01:01:28:22 Erin Croyle She's a special education teacher who moved all the way across the country with her family to work at one of the few school districts she could find that is striving toward meaningful inclusion. Trina, thank you so much for joining me.   01:01:28:24 - 01:01:38:13 Erin Croyle Champions for inclusion are real life superheroes, and superheroes typically have some great origin stories. So let's start with yours. How did you get to this place?   01:01:38:16 - 01:01:59:07 Trina Allen Well, first off, it's an honor to be here. So thank you. And I've always worked with kids. I worked in group homes and transitional living programs, and I did hotline services and things like that. And it was it was what I intended to do. I tended to be a therapist and I went to school and got my bachelor's in psychology and was going to move on.   01:01:59:07 - 01:02:22:07 Trina Allen And then the art therapy, I wanted to be an art therapist and the art therapy program I was assisting in was shut down. And it was for a group of students that had really intensive trauma and really needed that. Therapy is a heartbreaking thing, but they offered me at the school to work and the program for autistic students.   01:02:22:09 - 01:02:48:19 Trina Allen And so I, I said, Yeah, sure. And within a month they offered me a teaching position and I was in no way prepared or qualified any fashion for that. And I jumped in right away and eventually got my master's in special education. And, and it was at the most secluded, the most restricted, most segregated placement for students who had been forcibly exited from the general public education.   01:02:48:19 - 01:03:20:16 Trina Allen And I didn't know that I didn't know anything at the time. I didn't know anything about histories of disability and resistance and pressure for inclusion. And so I left there when I realized I couldn't. I was there for years. It was very painful to see students who could not get what they need and who needed so much. Their support needs were being routinely denied and I did my very best in making this space as loving as it possibly could within the context of extreme deprivation.   01:03:20:18 - 01:03:38:24 Trina Allen It was terrible. And so I went to the district thinking that it would be better and I loved it, and it was still segregated and I did a lot of things to force that to change. As I understood more and more what my students needed and also listened to people listen to it. Disabled adults who were like, This is what needs to happen.   01:03:39:03 - 01:04:16:08 Trina Allen And the best that I could do was harm reduction. I had a reverse inclusion program and I thought that by proving it could work and it did, that it would make the systemic inclusion of my students easier. Like, Look, the kids are already in, I already did it. We got it. Let me let's now make it institutionalized as opposed to like just this thing that we tagged ragtag together and there was literally no fat, no willingness, nothing, not even an ideological concern, no disabled people making any of the decisions.   01:04:16:10 - 01:04:40:06 Trina Allen And I realized, okay, like I'm getting paid to segregate kids and I got to go. And so I we looked across the country and had like five states. We were thinking about an ethical city school district said, hey, inclusion. And then it's actually done for students with high support needs. And I was like, okay, this might be just the website.   01:04:40:08 - 01:05:06:15 Trina Allen What happens if we move there? It isn't like that. And I have been glad to say that. Well, there's so, so, so much work to be done. It's a possibility. It's a possibility. Whereas everywhere I worked in the past I haven't been and that's where I am now. And I would say that my continued journey is really understanding my own neurodivergent and moving in the ways in which I want the world to look and listening to disabled voices.   01:05:06:15 - 01:05:08:20 Trina Allen That's sort of where I'm.   01:05:08:22 - 01:05:20:06 Erin Croyle Trying to tell me more about the search for inclusive school districts. When you were searching, how many were out there that even talked about having inclusive practices?   01:05:20:08 - 01:06:06:22 Trina Allen Well, like all things that get co-opted sort of by general rhetoric and they become meaningless. And so the word inclusion, the word diversity equity starts out as a rallying cry for changing systemic oppression, and it gets whitewashed into something that's just up towards a system that looks a little bit nicer, if that makes sense. And so it was very hard to be honest when District said inclusion, and what they could have meant was they have a nice bench for kids to sit out together and not think their their curriculum and their program instruction and their general ethos and the way in which they provide space for folks with disabilities to lead to be their own   01:06:06:22 - 01:06:31:07 Trina Allen heroes. Right. And I think that is almost nothing you can find on the website. So it was really difficult. I did look up several writers that I liked. I looked up several districts that were talking about doing cohort inclusion, and we just hoped, you know, we just really felt there was a lot of this looks like the best.   01:06:31:09 - 01:06:39:20 Trina Allen And I don't know that it is. I mean, honestly, the district we chose looks like the best that I could find from that sort of research.   01:06:39:22 - 01:07:06:23 Erin Croyle Meaningful inclusion is rare and doing it well is an investment in both time and resources. It's not something that our flawed system of public education is set up to handle. According to the National Center for Education Statistics, elementary and Secondary, public school revenues across the country total more than $950 billion during the 2020 and 2021 school year, which is the most recent data available.   01:07:07:00 - 01:07:51:18 Erin Croyle The Federal government contributed 11%, 46% came from state funds and 44% of that 950 billion plus dollars came from local sources, most often property taxes. This set up often pits school districts who are dealing with teacher shortages, aging buildings and students with diverse needs against the communities they serve. And it's frustrating, especially because the Individuals with Disabilities Education Act, also known as ID a OR idea, which was enacted nearly 50 years ago, was supposed to provide funds for students with disabilities to have access to a free and appropriate public education, also known as faith.   01:07:51:20 - 01:08:10:04 Erin Croyle But it has yet to be fully funded. I can't remember the exact number off the top of my head. It's it's obscenely low. So. Trina Well, I find that figure, which I'll also put in the show notes. Tell me, how is it even possible to do meaningful inclusion when you don't have the funds to support it?   01:08:10:06 - 01:08:52:00 Trina Allen The idea comes out of honestly, radical liberatory work of disabled activist who pushed and pushed their who risked their lives and risked their their freedom to be able to create a space in which the children that they knew would come after them would benefit from it. And that is the history of resistance in this country. And I think the funding of that and the ways in which we as a culture gate keep those things is it's we don't want to sound like we're anti that, so we just don't fund it, right?   01:08:52:02 - 01:09:24:09 Trina Allen It is by design. It's not an accidental not funding and I would say that goes for all education. I do not as a teacher and I love being a teacher and I will continue to work under these conditions regardless. But public education is bleeding. It is not it is not just inclusion. It is everything. It is the level of deep need of our students for connectivity, for learning, for presence, and for emotional stability in a world that's provide that.   01:09:24:09 - 01:10:01:01 Trina Allen And I think when it comes to civically, then you already have an open wound and now you're trying to treat it with 25 different. There needs to be I mean, every kid needs an IEP, right? Every kid needs an IEP, right? There should be no special in education. That should absolutely be that. And and because it's not and because the system is set, the false ideas of what human ability and production should look like, we need to find specifically inclusion, what we should be funding universal design.   01:10:01:03 - 01:10:11:01 Trina Allen We should be funding universal design for everybody. And folks with higher support needs, whatever that looks like in whatever area they might have, that should be centered.   01:10:11:03 - 01:10:31:15 Erin Croyle Right on screen. A universal design for living and learning needs to be embedded in everything we do, not just our schools. Circling back to idea funding. When it was enacted in 1975, it was supposed to cover 40% of costs for students with IEPs. Currently it's 14.7%.   01:10:31:20 - 01:10:32:05 Trina Allen That right?   01:10:32:08 - 01:10:56:03 Erin Croyle Schools can and do build Medicaid for the services their higher needs students receive. For folks who might not know children with disabilities that are significant enough to require lifelong support and care can apply for and receive what are known as Medicaid waivers that support home and community based living rather than institutionalization. Now, on the surface, this sounds like the perfect workaround, but it too is problematic.   01:10:56:05 - 01:11:21:01 Erin Croyle So much so that the details deserve a podcast of their own. The short of it as we know, health care in this country is not particularly stable. The Affordable Care Act removed lifetime caps on Medicaid, but there's no guarantee those caps won't be introduced. Based on our election cycles, some might think that these concerns are alarmist or unlikely, but unfortunately they are not.   01:11:21:03 - 01:11:43:00 Erin Croyle A good example. My son was born in 2010, just not that long ago. It's the same year that the Affordable Care Act was enacted, and had it not been, my son would have likely been denied medical coverage because he was born with Down syndrome, which is considered to be a preexisting condition. In addition to that, my son's medical complexities are many.   01:11:43:05 - 01:12:07:20 Erin Croyle He gets medications that are thousands of dollars a month, and thankfully, our insurance and his Medicaid pay for that. But thinking about lifetime caps and what he's going to need over a lifetime, I don't want to ever think about what would happen if there was a cap on his medical coverage. As far as Medicaid payback laws, I very much get the why behind them.   01:12:07:22 - 01:12:27:17 Erin Croyle But Medicaid doesn't take into account the money lost by families hiring lawyers to assist with the copious amounts of paperwork it can take to set up accounts in trust for your child. Because it really is that complicated. And then there's the lost income that comes with caregiving, and that's not a small amount. Trust me, I know this from experience.   01:12:27:19 - 01:12:57:14 Erin Croyle There is nothing simple about any of this. It's complex. And as you mentioned, it's systemic. It's not just our schools. It's across all parts of society. It's intermingled. So much so that we have to look at the bigger picture to truly understand it. And a lot of our school administrators don't really see that. And all of this is harming children and it's causing undue hardship for their families, and it's further marginalizing people with disabilities.   01:12:57:19 - 01:12:59:21 Erin Croyle From day one.   01:12:59:23 - 01:13:32:24 Trina Allen 100%, 100%, there should be for the things that you need for survival. And I would say belonging is certainly part of that. But just for the material of life, shelter, food, medical, that should be provided because we exist and it should be provided to the level of need. Right. So it is absurd to think about worrying about how much your child will cost and whether you can afford to save them.   01:13:33:01 - 01:14:00:19 Trina Allen That is not a position in an ethical country. That is not a position in an ethical society. It's not. And yet it is something that we think about all the time, or whether with their life will look like when we're gone. I ruminate on that, and part of that is because there aren't the safety nets and it's it's a hard place to be, but it's also a place to move from because in my opinion, this never there's never an end to a laboratory struggle.   01:14:00:19 - 01:14:01:22 Trina Allen Right. So.   01:14:01:24 - 01:14:31:13 Erin Croyle Right. And I think that especially with folks, aging disability is something that impacts everyone's life. One in four Americans have a disability that impacts their daily life. And when you think about that, that means either you or someone you love or someone close to you will have a disability in your lifetime. And so for me, that didn't happen until my son came into my life, not in a meaningful way.   01:14:31:13 - 01:14:52:16 Erin Croyle And so I think that's part of why I find origin stories so interesting, because I don't even know who I was before that happened. I would probably be embarrassed if I talked to 30 year old me about what people with disabilities need because I probably knew nothing. And that's why I think it's important to have these conversations.   01:14:52:18 - 01:15:20:02 Trina Allen But so I think there are several things with that. One, we live in a society that intentionally teaches us not that by segregating children right? If you notice, if you watch the segregation progression, disabled people are sort of sheltered and loved in this very paternal, rustic, patronizing way when they are small children. Everyone loves the headstart that has, again, pro headstart.   01:15:20:04 - 01:15:39:16 Trina Allen But, you know, that shows the video of the little boy with his new gait trainer. And it's just this thing and makes people feel good and great. And and he's included in the classroom in kindergarten and then he gets to be in third grade and the curriculum starts to change. And we'll he has a really great teacher of fourth grade, so it works.   01:15:39:18 - 01:16:01:03 Trina Allen And then sixth grade happens. And that switch that you just see, maybe it's that teacher that just doesn't understand. And then pretty soon in seventh grade, in eighth grade, and then by the beginning of high school, he's alone in a room. It's just like segregation. But by the time he's 25, where in society is this man with this intellectual disability?   01:16:01:05 - 01:16:32:05 Trina Allen And how is he included? And the answer is, you don't even know him. He has been so significantly excluded. The kids will remember back to him in preschool, but would have no consideration of how they would work with him at a job. Right. Right. They're gone. And then at 50. At 60, it's institutionalization. And that is a boy.   01:16:32:07 - 01:16:59:14 Trina Allen It's a boy. It is a society based on eugenics. The idea that there is only one way to look. That there is only one way to be. And there's only one way to produce for a society that's all about production, exploitation and consumerism. Right. I suggest that if you don't produce, then you are not productive. That means if you don't produce for that system, because we all know, folks, we all produce, right?   01:16:59:14 - 01:17:19:24 Trina Allen We are. We are the production of ourselves. Right? But if you don't produce in a very particular capitalistic kind of way, you're excised from society and I don't think I knew that at 25. I don't think I knew that at 15. And why? Why didn't you? And I know that when we were young, it's because they were stolen from us.   01:17:20:04 - 01:17:38:23 Trina Allen And that's why inclusion is the primary most important thing that we should be fighting for, even when public education is a wound that we're like, my gosh, we're there to get. It's not the thing that we can let go of. It's the thing we have to fight for, especially in these cases.   01:17:39:00 - 01:17:59:20 Erin Croyle I mean, everything you just said, I, I hope that I can maintain with my own neurodiversity my focus on this question, because I want to say, you know, what you said about the example of the child and how everyone loves him when he's young. I see it in my own son. He was little kid, cute and everyone loved him.   01:17:59:22 - 01:18:24:05 Erin Croyle And I slowly, as he got older, saw that change from stares with smiles to stares with, not smiles, not welcoming, stares at stores in places. And you know, the tics and the quirks and the stimming that he does not as welcomed and I think about that. I think about our generation and how we were never exposed to anyone different.   01:18:24:07 - 01:18:52:12 Erin Croyle And even currently, I think that we like to think that inclusion is happening. But when you look at the statistics, right, in 2022, more than two thirds of students served under IDF with the following disabilities. They spent 80% or more of their time during the school day in gen ed classes. So speech and language impairments was 89% specific and learning disabilities 76% other health impairments 71%.   01:18:52:14 - 01:19:26:00 Erin Croyle Development mental delays 70% visual impairments 69%. But when you look at more significant disabilities, deaf blindness, that percentage drops to 31%. Intellectual disabilities 21% and multiple disabilities 16%. So inclusion is happening in a positive way. But when we look at students who are more different than typical and I say in quotes, typical because what is typical? What is normal?   01:19:26:06 - 01:19:37:21 Erin Croyle What is it? We don't even what those words are so ridiculous. And I want to acknowledge that. But people who are different from the conforming are less included.   01:19:37:23 - 01:20:08:18 Trina Allen So is 100% related to support need and it's 100% related to an ideology as the education has an expected outcome. And both of those are problematic. And based on a white supremacist standard, when you specifically talk about that, it is so hard because in my previous classroom, the majority of my students were mostly disabled. And I think there is this really big misunderstanding.   01:20:08:19 - 01:20:58:14 Trina Allen You know, the presume competence campaign is super important. And that is because when people have communication challenges, whether that be from a motor issue or whether that be from an intellectual disability issue or a multitude of those factors push together. It changes everything. And the ways in which my students with higher support needs and multiple modes of multiple disabilities really the way in which they have been treated, the way in which they have been infantilized, the way in which they have been segregated, the way in which they have been treated as a guest in their own school is honestly feel the 3000 mile move.   01:20:58:15 - 01:21:27:18 Trina Allen I couldn't do it anymore. And it sounds terrible because it's like second area trauma is a real thing. And I acknowledge that I'm a human being and I love them. But it's not about me. Right? But at some point I'm getting paid for it to be about me and the look on a face of a child who a particular instance and this is one of those horror stories where it's not or to anybody who doesn't understand is a misunderstanding to most people, but a horror story to the person living it.   01:21:27:19 - 01:21:46:11 Trina Allen And I had a student who used a AC and we were on campus high school, and he took his AC with them. They were going out to walk the track for just like a quick break before we had between reading and math. And he saw a ball because they were doing soccer or something that the class wasn't interrupting.   01:21:46:11 - 01:22:06:03 Trina Allen You just grab the extra ball when he was playing with it. And the PE teacher on campus who should have known him, right. Should have known him, but didn't try to take the ball back and says that's not yours. And of course, he had set his AC down because he had run to go grab the ball, which he wanted to throw up and play with.   01:22:06:04 - 01:22:29:24 Trina Allen Right. So he has AC on the ground and he grabbed it back. It was like not, you know, like I'm playing with it. You have your turn for sharing that, like with his sister. And she said some things to him. And luckily one of the students that it was in my reverse inclusion program, she ran over there and explained, his AC is right there.   01:22:30:00 - 01:23:00:04 Trina Allen Hold on. And she said in front of him, What? He can't even talk. so this is like a now a very difficult situation for multiple reasons. My student, I have seen him cry once before. His knee came out of socket and he exploded in tears. That's the only time I've heard him cry. But all of a sudden and my door comes open and it's about 2 minutes before they're supposed to be back anyway.   01:23:00:06 - 01:23:25:20 Trina Allen And the student is in tears hysterically. And I'm like, my God, his knee is okay. I'm in the cosmos. And luckily the reverse inclusion student had been there to tell me what had really happened because while these are amazing, he probably wouldn't have been able to locate like this teacher dehumanized me. And she said to him, according to my my student, you have your own balls in your own classroom.   01:23:25:20 - 01:23:28:18 Trina Allen You can play with us. You don't need to play with arms.   01:23:28:20 - 01:23:30:15 Erin Croyle Are you serious?   01:23:30:17 - 01:24:05:19 Trina Allen Yo, I'm a lover most of the time. But you know, she needed to get some help. I was so mad. I was so livid. And of course, you know, my focus is on the students and also my other student who tried to navigate this. She herself has a disability, which is more on the like flash reactive aggression. And she kept it together instead of popping the teacher what she easily could have done and wanted to make that very clear, which I quite frankly understood.   01:24:05:19 - 01:24:25:07 Trina Allen Yeah, but then it got him back to me because he was the primary concern. And of course I called his mom. I called everybody in the book, I called my supervisor, I called her directly. It was like, don't you ever, you know, that whole thing. And can I tell you all that happened? Nothing.   01:24:25:09 - 01:24:26:16 Erin Croyle Of course.   01:24:26:18 - 01:24:46:02 Trina Allen Nothing. Just misunderstanding. She didn't. She didn't know. And again, like, how do we live in a society where it's a I didn't know to treat you like a human being.   01:24:46:04 - 01:25:08:09 Erin Croyle And this this is the problem I have when we talk about I work. Yeah, because the inclusion and that work, it doesn't include disabilities. Because if that was a student of color, it would be a completely different reaction. I mean, if the student had a disability and was a student of color, it wouldn't matter. It would still have happened.   01:25:08:09 - 01:25:18:22 Erin Croyle What I'm saying is it was a non-disabled student of color. Let me be clear. Yes, I am. I don't feel like that was necessarily happen, especially the comment about you have your own balls.   01:25:18:24 - 01:25:52:17 Trina Allen Right? Yes. The segregation piece. I think that when we look back on histories of resistance, right. We can look back on segregation and go, when was it ever good? Right? When was segregation ever for beneficial for the segregated party? And that is never there's something to be said about safe space. All right. That's real. That's different. That is led by and for people in an oppressed group making space for themselves.   01:25:52:17 - 01:26:29:15 Trina Allen Right. That's different than a segregation and force by a societal hierarchy. You can see exactly what you're talking about is racial segregation was abhorrent. Disability embolism, segregation is abhorrent. And there is no place that we just allow it. Like in school, we don't allow direct segregation besides ability. We do it 100%. We do it 100%. In our intention and our focus, we segregate children all the time based on race and the ways in which it plays out in school.   01:26:29:21 - 01:26:57:11 Trina Allen And I wish I could be more articulate about that. But it's the backdrop of everything. But it's not legally written down, right? It's not legally written down. It's legally written down for intellectually disabled students. We can give you percentages on when they are segregated and then it is absolutely, absolutely black disabled students are provided the absolute least inclusion.   01:26:57:13 - 01:27:20:17 Trina Allen And that is based on the idea. The anti-Blackness and Abel ism is really the same thing is really the same thing. I really follow the working definition of Abel ism by T.L. Lewis, and if you ever look that up, it's quite beautiful and terrifying and terrible, but it's a good explanation of the linkages there, and we just accept it.   01:27:20:17 - 01:27:24:01 Trina Allen And then they reframe the situation by saying it's in their best interest.   01:27:24:02 - 01:27:24:20 Erin Croyle Exactly.   01:27:25:01 - 01:27:28:00 Trina Allen And you're like, It is, but it's not.   01:27:28:02 - 01:28:11:23 Erin Croyle Well, it's not. And also, I find that because of the generation of parents being raised in even more segregated areas, we question whether our instincts are right to fight, to have our child included, because our minds are still stuck in other areas. The working definition by Talia Lewis is that it wasn't. This was last updated and I'll put it in the show notes in 2020 to have January a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence and fitness.   01:28:12:00 - 01:28:44:08 Erin Croyle These construct ideas are deeply rooted in eugenics, anti-blackness, misogyny, colonialism, imperialism and capitalism. This systemic oppression leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, health, wellness, and or their ability to satisfactorily, literally reproduce, excel and behave. You do not have to be disabled to experience ableism. Yes.   01:28:44:10 - 01:29:13:08 Trina Allen It's about behavior. Do you behave and can you produce and being a teacher? Of course. Of like, do I want my students to behave? my God, yes. Can we be nice? Yes. That's different. Between being nice and producing an expected behavior. A lot of what we talk about to students we tell them to do and when we redirect them Head doesn't have a lot with being nice, right?   01:29:13:08 - 01:29:39:03 Trina Allen Being kind. It has a lot to do with being in control. And we need to be focused more on what actual kindness and inclusion and reaching the kid, rooting out that hand right When we start focusing on some more of those values and making sure that all students have with it the support level that they need in different areas, that's universal as I move, Right?   01:29:39:06 - 01:29:47:20 Trina Allen That's that's making it safe and welcoming, loving space for everyone involved. And we don't have that right now. We don't have that society.   01:29:47:22 - 01:30:08:22 Erin Croyle We don't. And I hope we have time to get to this discussion about universal design for living and learning. And it might be a separate one. We'll see about time. What I do want to want to kind of focus on is what can we do now? What does inclusion look like? And I want to start with early, so and I'll share my own story.   01:30:08:22 - 01:30:39:05 Erin Croyle You know, my son, again is just 1014 when we lived in the D.C. area, the school, our community school, I really wanted him to go to. So I advocated for that for kindergarten. And he was going in. For anyone who doesn't know, reverse inclusion is when you have a classroom pretty much designed for students with disabilities, but you bring in typical non-disabled peers and it's a great model because it should be inclusive, but it's just not.   01:30:39:05 - 01:30:41:19 Erin Croyle Would you say that's right in your experience?   01:30:41:21 - 01:31:04:12 Trina Allen Yes. So it is harm reduction. So for my last several years, they made up a class that was sort of no credit, no credit. And those students were either funneled in because they had a free period and they needed a place to get somewhere, or the students genuinely wanted to take my class. And there was 8 to 10 students per period and they would change every quarter.   01:31:04:18 - 01:31:24:04 Trina Allen And at first it's very like school like, but then it becomes like family, like. And then I'm like, Dude, you haven't been in my class for two years. What are you doing? You didn't go, did you go to math class? Because like what? So it becomes very familial in a way that I wish school was their birthday get celebrated.   01:31:24:04 - 01:31:52:07 Trina Allen They get to go on field trips with us. It becomes a benefit for them and a benefit for my students. While that family loving aspect was, I would say, the best part of my teaching career so far, it is cultivated by personality, right? And this particular set up in this particular moment, and it does not allow for any systemic change.   01:31:52:09 - 01:32:18:23 Trina Allen In some ways it is limiting even more than not doing it at all. Its benefit, I would say absolutely to do it, but it sort of makes everyone around feel good about the scenario without actually changing it, right? So that when we went to dances and we went to the Disneyland trip, we did all this, my, my students had peers and knew them that we were cool.   01:32:18:24 - 01:32:36:13 Trina Allen It was a fun classroom to be. And then it becomes that and it becomes like a sibling relationship and it's beautiful and it's gorgeous and it's not sustainable. And doesn't go anywhere because it only happens because I chose to do it. I'm not there at that school anymore and there's not a single to any of the segregated classrooms anymore.   01:32:36:15 - 01:32:48:04 Trina Allen So it's not replicated, but it is harm reduction that you do temporarily while you work for systemic change. It's more segregated now than it was before I started.   01:32:48:06 - 01:33:13:18 Erin Croyle Yeah, I think I think that's exactly what the problem is. We're kind of waiting for systemic change. And in my experience, those of us who are working towards that change are also parents or caregivers of kids with disabilities. And so we cannot fully dedicate ourselves because of the systems working against us as caregivers.   01:33:13:20 - 01:33:37:23 Trina Allen And the fact that they don't know. Do you know how many times how many papers I have been in? I'm like, You're plainly lying. And as I got tenure, that's right. As I got tenured in my position became solid, I started getting I would say my classroom was lovely, right for us and lovely as a segregated table as design could be, right?   01:33:37:23 - 01:34:11:01 Trina Allen Yeah. And I started getting the parents that were, quote, challenging, which means lawyered up because my high school, the high school, they realize nothing I say matters, but my lawyer says how it does. And that's that's real talk. That's real talk. And so that's what ended up happening. And as I started realizing, I learned I learned more about educational law through the lawyers of my parents than I ever did in school.   01:34:11:03 - 01:34:32:13 Trina Allen And also from our own district lawyer who was also lied to. I mean, it's just why you have no idea. There's so much to talk about that that sidestepped it. But because of the fact that you have to fight and you have to have money and power behind you, like it's not just a matter of, we're tired.   01:34:32:13 - 01:35:09:24 Trina Allen It's a matter of actual resources and knowledge. They're told that's not available, that's not true. You just did it for another parent who had a lawyer. It's like a literal literal. It could be IEP back to back and in one that one is unavailable. And in the next, if you did a cross section of race and class regarding support services and dis services like speech therapy and things like that, who get speech services within a multiply disabled classroom.   01:35:10:01 - 01:35:34:15 Trina Allen And of course there's a separate problem of then over pathologizing black children for sure. I'm not talking about that. That's a separate issue that we can absolutely talk about. But the issue of black children who absolutely need speech language services, who have an actual speech language, disability and need an AC, and do they have that and what are their services like?   01:35:34:17 - 01:36:12:03 Trina Allen Is it 30 minutes in a group group therapy once a week, twice a month? Because that's appropriate. It's not you know, it's not it's not appropriate at all. And yet, if you did that longitudinal study of the rates of support services based upon race and class, we would tell ourselves it is unbelievable. Parents who don't have power, money behind their name and social capital for whatever reason, cannot affect change in the same way the people who do can't.   01:36:12:05 - 01:36:16:12 Trina Allen It doesn't matter if you fight day in, day out does matter.   01:36:16:14 - 01:36:24:20 Erin Croyle And that actually circles back to what I've seen in my own experience and exactly where I want to go to next, which is.   01:36:24:22 - 01:36:25:11 Trina Allen Given.   01:36:25:11 - 01:37:08:01 Erin Croyle The flaws in the system. Right. What can we do right now? So I'm, for example, and not loaded yet, but I am a strong advocate who has a level of privilege and so I can take the time to read and understand how to advocate for my son and for other children with disabilities. So when he was leaving his reverse Inclusion preschool, which was the model that they used in the district that we lived in in Northern Virginia, flawed as it may be, until we can have universal pre-K in our public schools, it was pretty great considering, especially since the private preschools in the area were expensive and the ones that would actually help my son   01:37:08:01 - 01:37:18:01 Erin Croyle and let him attend, their school ended up just putting him in a special classroom. They're like, Why am I paying for this? Yes, I'm not going to pay for this.   01:37:18:03 - 01:37:20:09 Trina Allen Okay? You're not going to have I'm.   01:37:20:09 - 01:37:25:02 Erin Croyle Not going to pay for what he's going to get regardless. I thought I would do better. So by.   01:37:25:07 - 01:37:25:20 Trina Allen Right.   01:37:25:22 - 01:37:54:15 Erin Croyle It's infuriating. So when we had our transition meeting to get him into kindergarten and I've written about this, but it's it's heartbreaking. I had to fight for my son to be included in a general education classroom in kindergarten. And he got in and he was the first kid with Down syndrome with that significant of a disability, if you will, to be in a general ed classroom at that school.   01:37:54:15 - 01:37:58:09 Erin Croyle Yes. Is that the 2010?   01:37:58:11 - 01:38:26:22 Trina Allen I know, I know. I know. It's so painful. You know, I remember and this is not exactly comparable, but it's similar. I had a student to one of the to my class that reversed include a kid who really wanted to take one of my students is mostly disabled with a cognitive disability and quadriplegia. She uses an eye gaze, a C right high tech and her math is obsolete.   01:38:27:00 - 01:38:58:12 Trina Allen We can talk a lot about the misplacing of her in my class and also my decision to not focus on that because she wanted to stay. So I will focus on her decision. That kid wanted to take her to the math class as an inclusion day. Just just math one math class. And the math teacher was like, okay, okay, you know, like it.   01:38:58:14 - 01:39:16:08 Trina Allen And they did. And of course, it went totally well and she had a blast and it was great. And, you know, everything was fine. And she showed off and she does very, very much that personality type. And it wasn't a fight to get her there. It wasn't like we were going to fight for her to be in the math class or anything.   01:39:16:10 - 01:39:39:02 Trina Allen But it was one day and when I had broached the subject of it being more, it's about it already worked. But no. And so and pre-K, you can fight right in K you can fight, but by high school you need like five layers. It's not even a platform. You can quit. It's not even a platform to quit.   01:39:39:04 - 01:39:57:12 Erin Croyle Well, in some cases too, though, Trina I share my personal experiences because I think it's important. I do talk to my son about sharing this and he's okay with it. And the question of that being okay is another question for a whole other podcast. You know, consent and what that means.   01:39:57:14 - 01:39:59:08 Trina Allen Yeah, but I totally hear you.   01:39:59:10 - 01:40:21:04 Erin Croyle But here's the problem that I am running into. It was a fight in elementary school to keep him in a speech therapist I still like. Yes, I only talk about PTSD. I still remember the calls I would get and I could feel at that school. The evidence, the way they were trying to stack up, how he didn't belong.   01:40:21:06 - 01:40:26:19 Trina Allen They were making their case. They're making the case They're making their case that they're their service was to make the case that he doesn't.   01:40:26:19 - 01:41:01:16 Erin Croyle Right. And then I have friends and also other parents and caregivers that I have helped and other people I know through our networks. Because when you have a kid with a disability, you just know other people and you get what you say time and time again. Ah, you know, the psychological testing of people using IQ to place kids in classrooms or multiple disabilities classrooms when we know that IQ testing and the stuff that they say is not IQ testing but really is is antiquated and is not a measure of our children's intellect, it.   01:41:01:16 - 01:41:22:23 Trina Allen Is based on a system that is able at its base for them to fail. The whole point is the standard deviation of norm. Yeah, I know. It's literally I always say, I know you have to legally do this for my daughter's IEP, right? I know you have to legally do this, but I had no interest in talking.   01:41:23:00 - 01:41:49:03 Erin Croyle I refused to allow the schools. I had my son tested by a doctor at Johns Hopkins, which is one of the best medical places in the country. And the number that was presented to me after that and the analysis that she gave me, this doctor, highly regarded, I just wanted to burn it because I knew that it was not a measure or a reflection of who my son was.   01:41:49:05 - 01:41:55:15 Erin Croyle And in my conversation with her, I was I just thought, how are you a professional in this field?   01:41:55:17 - 01:42:16:20 Trina Allen Thank you. And they really believe it. They believe being as I know your son, right? Yeah, I can. 300,000 times tell you that what he is and how he is and the ways in which he is and the ways in which he's going to become and the ways in which he is becoming. We'll never look on that test.   01:42:17:00 - 01:42:47:10 Trina Allen And the reason why is because that test was not decided for him to become that test was excited for him to go away. Right. Was to backtrack. It was to push him out. He is amazing. And whatever that test said was not trying to capture that. Luckily, again, it's nice to work in the same school that your child will be assessed at.   01:42:47:12 - 01:43:03:23 Trina Allen Right to say that. So I know the tester of my child who also has Down syndrome. I was like, girl, play with her, have a good time. But please understand that when you come back with not testable, I'm going to be like saying, Yeah, you did your job right?   01:43:04:00 - 01:43:30:05 Erin Croyle And I anyone listening to this who is in a similar situation, I want you to hear Chinas words because to me, what you said about my son. Because to me, that's every every kid who was subjected to three, 3%. Right. And I want you to hold close to yourself and remember that students without disabilities are never subjected to the testing and the scrutiny and the microscope that our children are put under.   01:43:30:07 - 01:43:45:19 Erin Croyle And it breaks my heart that we have to put them through this. And I refuse every single test possible because of that. He does not deserve to be analyzed like some experiment, and none of our kids do.   01:43:45:21 - 01:44:14:07 Trina Allen No, they really don't. And there is nothing wrong with saying this is where he is when it comes to literacy. This is what he is doing. When it comes to social skills. It's fine to talk about what a kid is doing right. There's nothing wrong with that. I want to know those things. I want to know if when you asked him last time if he wanted peanut butter and jelly and he said yes, whether that actually reflected what he wanted, I want to meet his needs.   01:44:14:09 - 01:44:37:15 Trina Allen Right. Right. That's different than assessing where he is on a scale that's meant to make him an outlier. It's just a very different thing. The purpose is different, right? Is the purpose to meet his need? No, this assessment shows us that this would work. And what? No, You know that that's not what you're doing. Not looking for something?   01:44:37:17 - 01:44:49:16 Erin Croyle No. Some of the testing is to try to get a picture of who they are and what their needs are. For one thing that I've experienced in the district we're both in now, I don't think happens many other places.   01:44:49:18 - 01:44:50:00 Trina Allen Yeah.   01:44:50:06 - 01:45:00:14 Erin Croyle Is in honesty from educators that the stuff that they have to do and they have to show us is not a reflection of who he really is. And they recognize that.   01:45:00:19 - 01:45:01:01 Trina Allen Yeah.   01:45:01:07 - 01:45:09:07 Erin Croyle The other thing that I have experienced is I have had occupational therapist and speech language pathologists for those listening.   01:45:09:07 - 01:45:10:04 Trina Allen So that's a.   01:45:10:06 - 01:45:39:04 Erin Croyle Right. We all know the acronyms, but not everyone does. I have had my son's educators take the time to do the assessment as needed with the rules and the time constraints, but then take the time to give my child the adaptations, the time that he needs for those standardized tests and the information they come back even surprised me when they gave him what he needed to show what he knows.   01:45:39:06 - 01:45:47:01 Erin Croyle He knows way more than even I as his biggest champion, realize. Yes, but that rarely happens.   01:45:47:03 - 01:46:18:09 Trina Allen So that's why we're really lucky. And I'm going to say this like I've worked now in the field since 2005, so that makes me really old. So within that time, the discrepancies services provided it and the district that we're working in or working with or whatever is far, far better. So I will tell you, I had to for my daughter and I'm a teacher within the district in my previous district, the teacher within the district power, a lot of power to be honest.   01:46:18:12 - 01:46:47:05 Trina Allen And within that framework I had to fight to get her a half an hour of speech and language a week, and then two additional sessions of groups I had to fight. It's not like I just got that. I went through the channels. Love you. I respect your report. I appreciate the time you put into it. I'm just going to go ahead and let you know that I looked at the recommendations and I'm going to request independent evaluation.   01:46:47:05 - 01:47:10:02 Trina Allen And you had to fight and had to do that. You know, And she got it and she still didn't get it out. And I will say that's why I do believe it's possible. And so when we talk about systemic problems, I think it's really important to understand how bad it really is, because I don't think people understand how bad our culture really is in regards to able I and how deeply ableist and eugenic everything just based on eugenics.   01:47:10:04 - 01:47:26:22 Trina Allen And that's really a dark landscape to go from. But where do we go moving forward? And I think this is one of those ways in which you disrupt. I have to follow the teaching, right? I mean, I got to do my test. I know how to do it. I can do it. You know, I'm going to make it fun, though.   01:47:26:22 - 01:47:48:06 Trina Allen You know, any kid that I'm forced to subject to a standardized test is going to have a real good time with me. And I think that you can disrupt those ways by making the actual lived experience better. You can disrupt by what you're doing, saying no until you absolutely have to for this particular thing. Right. You can talk about how they're invalid measures.   01:47:48:06 - 01:48:06:03 Trina Allen I think that's important. But I think more than anything it's about the ways in which you treat the people in front of you. Yeah, you're not going to work within the system and change it without having to follow the things you don't like. That's why I love being outside of the system, quite frankly, and I love being a disruptor in the community.   01:48:06:03 - 01:48:29:07 Trina Allen I love being a protester or an activist. That's great. But I also need jobs. So and I think that those ways, like what you just talked about, the speech pathology, doing what they need to do, but then say, let me show you a list of everything he said. He knows this, this and this. Let me tell you a story about what he did.   01:48:29:09 - 01:48:59:20 Trina Allen Let me show you a video, a picture about something he is proud of. Let me teach him how he can show you. I think the more that we can find in ways in which we interact with the individuals in front of us in a humanistic and loving and equal nonhierarchical way is one important and then two, as advocates, there is that superhero aspect of it's my job to fight, and that's my job to fight.   01:48:59:20 - 01:49:33:04 Trina Allen Absolutely. As an ally, Yes. As a person with power. As a person of privilege. Yes. Yes. Yes. 100%. As a teacher, I am in power over you by design. I will absolutely fight for you. And the ways in which we can shift that focus because children don't always need to hear hero. They need to be the hero ways in which they can do that and the disruption of that, that teaching them that these systems are wrong as opposed to you are wrong.   01:49:33:06 - 01:49:42:11 Trina Allen Telling them outright took us all the time. I don't believe in this. Yeah I think that that matters.   01:49:42:13 - 01:50:01:21 Erin Croyle One, I think too I mean, there's so much here, Trina, even as parents, because we've been raised in such a segregated, ablest world, even as parents, even as someone who loves someone and thinks of our children with disabilities as the best thing in the world and thinks that they think.   01:50:01:23 - 01:50:02:20 Trina Allen Yes.   01:50:02:22 - 01:50:23:08 Erin Croyle The best of them, I sometimes underestimate my son. And I have to remind myself, right, so to speak, to him like a 14 year old, because his expressive language is not there. But my gosh, his receptive language is is there. Yes. And he gets it and they get it and they want to know.   01:50:23:10 - 01:50:24:22 Trina Allen brilliant. Yeah. Yes.   01:50:24:24 - 01:50:46:02 Erin Croyle You're working for them and you're on their side and they want to be taught things. I mean, I see people. Yeah. Because my son doesn't speak. And by the way, I talk about my son as an example, but I'm speaking for all kids. I do this podcast for every one. I want to change for everyone, but I'm not going to give examples of other kids because it's not okay.   01:50:46:02 - 01:50:58:23 Erin Croyle Yeah. So I think that's so important to point out to folks, This is not about me making the world better, so my son gets what he needs. This is about using the examples so we can all work together to make the world a better period.   01:50:59:00 - 01:51:03:19 Trina Allen And that's the only way it's going to be better for your son. Our liberation. We're tied together. Yeah. Yeah.   01:51:03:21 - 01:51:24:08 Erin Croyle Exactly. We talk around our kids like they're not there because they don't speak as much or they communicate differently. And I think that that is one of the main many, many, many reasons inclusion is so important because they just need to know that they're part of it. They're part of the conversation representation being at the table. Yeah, they get that.   01:51:24:10 - 01:51:50:00 Trina Allen I totally agree. It's so hard too, because I think once we start letting go of this idea of what a person should look like should be like, I get upset on this age appropriateness sometimes when people say, I'm going to talk to him like he's 14. And then when you're talking about someone who has really high support needs right, everyone is like, well, that doesn't work.   01:51:50:04 - 01:52:11:08 Trina Allen And it's like, No, wait, I'm going to talk to him, who he is, where he is. I'm going to have joint attention with him. I'm going to figure out the ways in which he communicates and I'm going to mirror that back to him and I'm going to take his lead on that. And I'm going to presume competence. And if I don't know if he understands a concept or not, I'm an error on the side.   01:52:11:08 - 01:52:39:09 Trina Allen He does. That's the presumption of competence. And if my conversation doesn't benefit in any way, I'm going to continue to figure out what his responses are or his initiations of conversation are so that wherever he's at and whatever he wants to talk about, that's centered because the initial assumption by most people is it doesn't pertain to him because we've segregated.   01:52:39:11 - 01:53:11:11 Trina Allen So he's not even part of the conversation. And then the first part is placement. Like, we'll let you sit at our table, we'll let you yeah, we'll let you. And then it's going to be like, Well, yeah, and I guess you'll need a few books to sit on so you can reach the, you know, whatever until we understand that that table has been built to deny him access, that he has to be the one to build his seat at that table that fits him, build his seat at that table, that helps support everyone else around him.   01:53:11:13 - 01:53:36:23 Trina Allen That's where it's at. It's not just placement. And it's not just presumption of competence. It's all of those things together with and understanding that he is belonging. That's so hard to produce when like your hands are tied and the tools or whatever, but the least that's the least we can do is the least we can do is listen.   01:53:37:00 - 01:53:38:24 Trina Allen Right. Listen to him.   01:53:39:01 - 01:53:43:00 Erin Croyle Yeah. And take the time to listen. Because you.   01:53:43:00 - 01:53:44:23 Trina Allen Have forgotten. God.   01:53:45:00 - 01:53:58:21 Erin Croyle You have to listen differently and just use a different set of skills because it's it's a different conversation. You have to connect with a lot of people before you can learn how to listen to them.   01:53:58:23 - 01:54:22:20 Trina Allen Yes, I totally agree. Everything is so based on speaking like the verbal ability. Right. That's what we think. That's what we believe. But realistically, we do so much other language and communication. So much of the ways in which we interact are not anything about that. But we forget that we're we're talking to disabled folks who are not speaking, right.   01:54:22:22 - 01:54:45:17 Trina Allen It's like we all of a sudden assume that the words aren't there, that the expressively isn't there. It's like we can't have this interaction. And you're like, what? Like 90% of what we do isn't even that big, so why would it matter so much? But it does. And so that deep listening and that deep understanding and trial and error try five different language systems.   01:54:45:17 - 01:54:50:06 Trina Allen And if they don't work you trying. But it's not giving up.   01:54:50:08 - 01:55:10:05 Erin Croyle It's not. And I think too, you know, so often we say behavior as communication and yeah it is except that what is behind the communication and what else is going on. Right. When we think about what our kids are up against and the able is that they experience I think in a good example is in the medical community.   01:55:10:11 - 01:55:10:20 Trina Allen Yeah.   01:55:10:20 - 01:55:17:20 Erin Croyle You know just finding an eye doctor. Right. That will actually take the time.   01:55:17:22 - 01:55:18:06 Trina Allen yeah.   01:55:18:07 - 01:55:40:19 Erin Croyle They could be related to the fact that even though they have glasses, maybe their eye doctor really wasn't doing due diligence to treat them right. Or the fact that like again, my son has had hearing loss, but it went undetected because the first audiologist was ablest and said it's okay if you could hear out of one ear and was willing to just let you.   01:55:40:21 - 01:55:41:03 Trina Allen Right.   01:55:41:05 - 01:55:53:10 Erin Croyle And then the school before he even had a hearing aids, the school back in Northern Virginia claimed that they didn't use FM systems, which I don't know, a school that would not use those extra things.   01:55:53:10 - 01:56:16:13 Trina Allen They didn't have them, they hadn't done it yet. Means they can't they Right. I just I every single one of those I can say Yes. My daughter, I wasn't there. Thank God. But my partner took my daughter to an audiologist who refused to speak to her. But totally talked to my partner. And Erin was like, you know, you could ask her.   01:56:16:17 - 01:56:35:10 Trina Allen At first it was like, I'm going to gently lead you to this. Clearly you've been raised in the segregated society. And then it was like, I don't know, ask her, you know, like, I don't know. Ask her. I don't know. Ask her. I don't know. Ask her. And the fact that you couldn't take that, you know, like is just painful in itself.   01:56:35:12 - 01:56:59:07 Trina Allen And then when to get real, like when are they doing it? Okay, well, this is more than just this is more than just ignoring her. He's being made at this point. He doesn't want to he doesn't want to start knowing when those things happen and then knowing if that audiology report was any good. And now medical decisions are being made off of whether she has surgery or not.   01:56:59:09 - 01:57:07:21 Trina Allen Right. Then we could talk about what all the ablest things in regards to that, because she has to be in a hospital and have surgery, you know, all the all the things. Right.   01:57:07:23 - 01:57:09:24 Erin Croyle But it is all related.   01:57:10:01 - 01:57:33:21 Trina Allen It's all related. It's all related and every single one of those things that you just mentioned is same. And it cannot be recapitulated over and over and over and over and over again unless that's the way it's meant to be. Right? We couldn't live in a racist society where all these things keep happening, keep happening, keep happening unless that was by design, Able is and doesn't accidentally happen because of bad players.   01:57:33:23 - 01:57:50:11 Trina Allen There are bad players, there are bad apples. There are many people we can talk about that. That's a very small percentage of what is actually happening, right? It's by design. That audiology report is really expensive if he gets what he needs. Yeah.   01:57:50:13 - 01:58:02:05 Erin Croyle It is. It is. But getting back getting back to inclusion in schools, I think it's important to note that, yeah, you know, behaviors, communication, but we really have to push.   01:58:02:07 - 01:58:02:21 Trina Allen Out to.   01:58:02:21 - 01:58:08:15 Erin Croyle Understand the root of the behavior before we just assume that it is something. Yes.   01:58:08:15 - 01:58:39:22 Trina Allen Thank you, behaviorists. And again, my early career I believed in ABA because I thought that was the standard. That's what I was told. I got out and then after about a few dozen, I better try harder. I learned very quickly that wanting that wanting someone's behavior to tell me what was in their soul, to tell me what support they needed is so wrong.   01:58:39:24 - 01:59:06:17 Trina Allen And it would be so wrong to suggest that what I do is a direct relation of who I am right with all these constraints around me. And I think that finding out the why and finding out the need, if you look at a kid that has a behavior that you might not want to see, like fighting or something that is challenging to deal with, and you're only looking at it as a way to get them to stop biting.   01:59:06:17 - 01:59:28:07 Trina Allen You are truly, truly, truly misguided. So the first step is trying to figure out what they're trying to tell you or whatever the communication piece that more than anything is why? Like what you're talking about, why is there that need in the first place? Is this environment super overstimulated or is it they're lonely or is it like that real human need?   01:59:28:07 - 01:59:41:21 Trina Allen And the assumption, though, is that both, especially folks with intellectual disabilities, folks, don't give them access to human emotion. It's not just presumption of competence, it's presumption of humanity.   01:59:41:23 - 02:00:07:20 Erin Croyle Yeah, I want to take this part of the conversation and go back to grade levels and inclusion because COVID aside, the pandemic and how that was for students with disabilities, I feel like inclusion is far easier in grade school. What I notice in my own experience and what I've heard from some of their peers is that when you enter middle school, it changes.   02:00:07:20 - 02:00:37:16 Erin Croyle And that's what I saw with my own son in that you don't have one teacher. The classrooms are different. It's harder. And between that, my son experienced anxiety so extreme this past school year that he refused to go to classrooms and we were having him do General Ed. And what's interesting in the school district that Trina and I are both in is you can have your child participate in Gen Z if you advocate with the IEP to do that.   02:00:37:18 - 02:01:01:21 Erin Croyle But there is one school that has something that's called a community based classroom, and it is it is more of like a cohort model that, you know, you have students with more significant needs who have to basically say, we're going to go off the standard diploma track to go into this classroom, which is a whole other can of worms that is just ablest and gut wrenching.   02:01:01:21 - 02:01:02:16 Erin Croyle But anyway.   02:01:02:17 - 02:01:06:14 Trina Allen Yeah, it's illegal. It's a legal play. That sucks.   02:01:06:16 - 02:01:12:17 Erin Croyle It sucks, right? Because it's basically saying that I'm going to lower my expectations because I see my child's needs now.   02:01:12:18 - 02:01:30:01 Trina Allen Yeah. It basically suggests that folks who with an intellectual disability don't deserve a diploma, Right? Which means it means that a diploma is based on a very specific ideology of understanding and cognition, and that is inherently able.   02:01:30:03 - 02:01:31:02 Erin Croyle Yes.   02:01:31:04 - 02:01:33:22 Trina Allen And to sign that document, I.   02:01:33:24 - 02:02:06:12 Erin Croyle Know it's hard and it's I get it makes me cry every time, because the systems force us as parents to take opportunities away from our children, to give them what they need in the moment. Yes, I think so many people go through this. I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track.   02:02:06:12 - 02:02:11:22 Erin Croyle Yeah, I tried to help my son since he was two.   02:02:11:22 - 02:02:12:24 Trina Allen With yeah, reading.   02:02:12:24 - 02:02:20:04 Erin Croyle Programs, all sorts of things. The thing is, there's no cookie cutter like a kid with Down's syndrome is one kid with Down's syndrome.   02:02:20:06 - 02:02:21:06 Trina Allen Thank you. Right.   02:02:21:12 - 02:02:45:23 Erin Croyle Who is one kid with autism? Is CP. Like, he's. He's brilliant and he wants to learn. So what I experience this year is not only did he have extreme anxiety, not only do I know that probably a lot of his non-disabled peers in Gen Ed stared at him, and I know that some kids are nice, but I do know that other kids are not.   02:02:45:23 - 02:03:22:05 Erin Croyle And Arlo has a 1 to 1, so at least I know that he was protected. But Arlo also is a human being who wants to feel successful and proud of himself. And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is, I find myself blaming myself when I think that our schools, once we get to a certain level, it's not parents failing, but it's our schools not offering enough options for kids with more significant needs.   02:03:22:05 - 02:03:38:13 Erin Croyle Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that they reach a certain age and there's no choice anymore. There's no other option anymore.   02:03:38:15 - 02:04:06:00 Trina Allen Right. Okay. So first off, I specifically in this situation, I want to commend you for doing the deep listening that your child with. It is so important that we do that. So while we're on the fight for inclusion, it cannot be on the back of our individual child. And listening to what he needs in the moment, listening to him is the biggest fight of Abel's that you will ever do with him.   02:04:06:04 - 02:04:35:02 Trina Allen He told you what he needed. You listened so good. Good for you. That is what a mom does. And the issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things, that math class needs to be structured. These are the standards and every single kid in it is at a different place and it needs to be supported in that way.   02:04:35:04 - 02:04:56:24 Trina Allen Do I think it can be done? my God, Math is like the easiest. You know, it becomes a more complicated in like history and English, but it doesn't have to be if the design is universal. Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son.   02:04:57:01 - 02:05:20:22 Trina Allen That curriculum needs to be created within and created with the kid at a different level and created with a kid at the different level. And it created with a kid in a different level. And it needs to be individualized. And that is doable with time and space.   02:05:20:24 - 02:05:50:05 Erin Croyle I want to stop right there so you listener can let those words resonate. Listening to your child is the most important thing you can do to combat ableism. I learned so much from this interview about inclusion, about ableism, about what we can do to effect change, and about myself. That's why this episo de needed a sequel. I didn't want to leave anything on the cutting room floor.   02:05:50:07 - 02:06:16:10 Erin Croyle In part two, Trina breaks down how schools can create inclusive curriculum. The able As I am, we experience from other parents and how we can help shift mindsets and the equally important fight of inclusion outside of academics. You don't want to miss it, so be sure to share subscribed, like follow or whatever it is you need so you get a ping when this show drops.   02:06:16:12 - 02:06:23:13 Erin Croyle This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.    

Looking to feel better? Want to help your children feel better?  It might be time for a detox. And the one we're talking about actually works.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: Details on the United States Surgeon General's Advisory About Effects of Social Media on Youth Mental Health.    Surgeon General Dr. Vivek Murthy's Op Ed Essay on why he's calling for a warning label for social media.    Here is a full review of the book The Anxious Generation by Jonathan Haidt.    Looking for ways to protect your family when they are online? Check out Erin's article on how to make that happen: Time for Some Screen Cleaning. Want to share your own experiences attempting a digital detox? Send Erin an email!   TRANSCRIPT: Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement and Lisa's Partnership for People with Disabilities.   01:00:34:17 - 01:01:06:12 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating of the tough stuff for so many of us. Everything feels harder than it should lately. Most everyone I know is just sort of getting by. That whole living your best life vibe that we had going around several years ago is mocked in a lot of circles.   01:01:06:14 - 01:01:22:15 Erin Croyle So what's going on and what can we do to change it? Dare I say, a detox is in order and the one I'm recommending is something virtually everyone needs.   01:01:22:17 - 01:01:46:01 Erin Croyle Is anyone okay right now? I'm living in this fog that's just clinging to every part of my being. My brain, my body, my soul. It lightens now and then and even lifts for a bit once in a while. But most of the time, it's so dense. I feel it pulling me down. When I talk to people close to me, most of them are in this metaphorical fog too.   01:01:46:03 - 01:02:10:05 Erin Croyle I'm sure that some of what my age said is feeling is partly part of middle age, but I see it in my children and other kids their ages. I see it in. I see it across the board. This is an unprecedented mental health crisis that we're in. Our whole country is living under a heaviness like never before. So how do we feel?   01:02:10:05 - 01:02:39:01 Erin Croyle Better. Look, I'm a journalist, not a doctor. Over the years, I've read, listened to, watched and or tried practically every bit of healthy living advice out there clean eating, running, tracking macros, fitness watches, apps, sleep hygiene, skipping breakfast, and sometimes lunch, also known as intermittent fasting. And even though I know that they're ridiculous, I love the idea of a detox.   01:02:39:03 - 01:03:12:01 Erin Croyle The problem is none of them work. Even if I feel better for a little bit once, whatever I've cut out comes back into my life. All that work is for naught except for one. As my daughter would say. Drum roll, please. The Digital Detox. My first true digital detox happened by accident nearly a decade ago. We were on a family vacation in Michigan's Upper Peninsula and we had absolutely no service.   01:03:12:03 - 01:03:41:09 Erin Croyle So imagine a week without a ping, a ring or a vibration interrupting a darn thing. There were no new notifications on social media. I didn't have the ability to post anything and therefore there was no need to see if there were any reactions. I didn't have any breaking news, no texts. It was amazing. That week was transforming. We live in an era of information overload that is beyond comprehension.   01:03:41:11 - 01:04:15:03 Erin Croyle The only way to realize this is to pull yourself out of it. Pretty much everything you pull up on your phone is designed to get you to use your phone or that app or that website even more. This podcast, same thing. Every entity has their own reasons to get you to go down the rabbit hole. Now, for the work I do, it's so that people with disabilities and their families, whether it's ADHD or cerebral palsy or mental health or Down's syndrome or whatever, it's to have meaningful content with relatable stories that we can all listen to.   01:04:15:05 - 01:04:44:08 Erin Croyle It's to connect people through digital media or in person, because this experience can be so isolating. It's providing information and resources for people with disabilities and their caregivers. It's collaborating with professionals and community members to make the world a better place for everyone. Ours is a well meaning rabbit hole, as are many others. But there are plenty of other holes that we fall down, and they range from harmless fun to vapid to downright dangerous.   01:04:44:10 - 01:05:16:17 Erin Croyle Now, as an adult, I'm aware of the social media suck. My children, however, are in defiant denial of the pull it has on them. I finally have some research to back up my concerns. Our surgeon General, Dr. Vivek Murthy, is calling for a warning label for social media platforms. He points out that it's clear that it's a contributor to our mental health crisis and that we have to act now, even though the information we might have is imperfect.   01:05:16:19 - 01:05:46:04 Erin Croyle In his latest book, The Anxious Generation How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness. Social psychologist Jonathan Haidt demonstrates the direct correlation between the introduction turned widespread use of smartphones. Social media, video games and other online platforms to the increasingly worrisome rise of the mental health crisis that we've witnessed over the last decade plus.   01:05:46:06 - 01:06:17:23 Erin Croyle He does this using copious amounts of research. I'll put the links to the Surgeon General's initiative and more about the book and its author in the show notes. Reading his book confirms so many things that I've heard anecdotally from other parents and educators, particularly the term forever elsewhere. It's how they describe children today, especially in school, where they should be engaging and interacting, but they always seem sort of absent.   01:06:18:00 - 01:06:45:12 Erin Croyle If you talk to educators who've been in the field for a while, they'll tell you they see a dramatic change in students today and they'll describe something that sounds just like that forever elsewhere phenomenon. It's really interesting to me how our society puts Steve Jobs on this pedestal because he created the iPhone and the iPad and so many people just hand their children these iPads and kids have their own tablets.   01:06:45:14 - 01:07:14:00 Erin Croyle But Steve Jobs wouldn't let his kids use either of these devices in their home. Bill Gates talked about how he limited screen time for his own children. So our tech leaders know about the dangers. And we now have plenty of evidence that our social media companies are in the business of creating addictive platforms to draw us and especially children in to be heavy users.   01:07:14:02 - 01:07:45:13 Erin Croyle I mean, if you think about it, we are creating content and making them money, most of us, for free. Now, I know it's hard because it can be so much fun and it connects us with people that we know. But I don't know when you think about it, do you really need all that connection? And when I look at all my friends on Facebook and Instagram, these hundreds of people, I mean, no offense to many of you, but do we need to know what's going on in each other's lives?   01:07:45:15 - 01:08:26:12 Erin Croyle Do I really want to be connected to my entire graduating high school class anymore? I'm 46, and the way that our online interactions impact our in-person interactions is palpable. It's desensitized us to being humane and empathetic. It's so easy to write a flippant comment on someone's post that we would never dream of saying to that person to their face.   01:08:26:14 - 01:09:22:03 Erin Croyle It's impacting humanity. It's impacting our caring, our kindness, our tolerance. We really need to look at that. Beyond that, though, just that constant stimulation, we aren't even aware of what it's doing to our brains. But what I can tell you from my own experience when I do quote unquote detox or make intentional efforts to not have my phone or not be online or not check anything, I feel better when we're in the throes of the busiest times of the year and you get the vibration or the text or the ping.   01:09:22:05 - 01:09:52:00 Erin Croyle It can just set you off. It's impossible to relax because we are constantly interrupted and there's a sense of urgency that we never had to deal with before. Someone texts you and they expect to have the response right away. What is that doing to our nervous system? Could part of this be why we are all so tapped out?   01:09:52:02 - 01:10:28:21 Erin Croyle A lot of people like to blame the mental health crisis on the pandemic and the isolation we experienced while we were figuring out just how contagious and awful COVID is. In what in that time, I know that I saw my own children grade school age children, online hours every day. And what I can tell you is even my youngest, who was a kindergartner at the time, was able to circumvent so many safeguards to just go on to YouTube.   01:10:28:23 - 01:10:54:16 Erin Croyle These were school devices and they could figure out how to skip school at home. It advanced the ways that they knew how to work the systems. I hate Chromebooks, but the schools are relying on them now. How are we going to figure out how to undo some of this to move forward? I'm not sure, but we have to.   01:10:54:18 - 01:11:28:02 Erin Croyle Now, I know it's not so simple, and especially when it comes to having children with intellectual and developmental disabilities. Listen, I'm not perfect. I get it. I view screens. I will still use screens. My son is home sick today and is watching TV right now. Because what am I supposed to do? Caregiving is so hard and so isolating at times that letting our children use a screen is the only way to get through the day.   01:11:28:04 - 01:12:04:05 Erin Croyle But we don't know the consequences yet. And there's so little research and understanding about what's going on in the brains of everybody, let alone people who are neurodivergent and or intellectually and or developmentally disabled. Think about it. There's just so little research period for anyone other than, you know, certain demographics. And so now we have this technology that we know, but now we have research and confirmation about how dangerous it is, But we don't have any clue yet how dangerous it is.   01:12:04:05 - 01:12:38:20 Erin Croyle And we might never. For children with intellectual and developmental disabilities. I see this with my own children and their peers. My oldest has down syndrome and ADHD, and there's virtually no research on that particular co-morbidity. Yet anecdotally in my own circles, it's an incredibly common thing to have both Down Syndrome and ADHD right now. Combine that with the fact that we're just at the tip of the iceberg of understanding how incredibly detrimental the recreational use of screens are for children.   01:12:38:22 - 01:13:08:03 Erin Croyle And if we're being honest with ourselves, is the screen use we consider necessary or educational? Truly, that I've heard some educators mention that the popular math learning game prodigy, the online one, is pretty much garbage. And I know personally that it sucks kids in and that there are upgrades that children beg parents to buy. The line is purposely blurred between what is actually educational and useful and what is recreational.   01:13:08:05 - 01:13:45:16 Erin Croyle And that line is intentionally blurred to keep children and adults locked. In the last decade, we've been indoctrinated into having our lives completely online, and it's going to take a while to undo that. I see it with myself. I'll just read news on my New York Times app and go down there Rabbit hole, and suddenly I find myself going from the latest in politics to what's happening in the Middle East to a food article, to an advice column to their gains.   01:13:45:16 - 01:14:12:19 Erin Croyle And all of a sudden an hour's gone, an hour of my day is gone and there are not enough hours in the day. And that's me, an adult who understands this and can say, gosh, I need to do better. But then I see what happens to my children, all three of them. All they want is to watch something or YouTube or a phone or a tablet.   01:14:12:21 - 01:14:48:19 Erin Croyle Just screen. Screen. Screen, screen. Screen screen. My oldest son has experienced so much anxiety and will talk about how he doesn't feel good and whine and even cry asking for YouTube. And because he has Down syndrome and because it's so hard to make friends and because this world is just so hard and ablest and tough. If that brings in joy, I want to give that to him because so much of his life is so hard.   01:14:48:21 - 01:15:12:05 Erin Croyle But then I see what that spiral does to him and I don't know what to do. And what's even more perplexing is when I expressed concern that part of this might be related to him just kind of really wanting to be on a screen all the time. Even his doctors say, well, if that makes him happy, then maybe that's okay.   01:15:12:07 - 01:15:37:20 Erin Croyle But every part of my being tells me I'm wrong. Yet getting him out of that cycle, even in my own home, is virtually impossible. I mean, just going to try to take YouTube off of the TV is really, really hard. I have an article on that that I'll put in the show notes because I did do some research on that.   01:15:38:01 - 01:16:08:19 Erin Croyle While we were quarantined during the pandemic, just to help not have to monitor my children all the time and make sure they weren't watching things. But that's the thing. Even with restrictions in place, even with parental safeguards, it's a toxic rabbit hole that unless you're constantly monitoring your kids, you're not going to know what they're doing. And these computers that the school gives them, that they're supposed to do their homework on.   01:16:08:21 - 01:16:34:18 Erin Croyle It's mind boggling to me that that's the expectation because I know I'm going to have to stand behind my kids to keep them off of YouTube, to keep them on task. Why are our structures set up like this? We need to undo them to help our kids. It's time for us to take control and turn this around for ourselves.   01:16:34:20 - 01:17:04:06 Erin Croyle We cannot change the fact that we live in a digital world. And why should we? There are a lot of benefits, and now that we know the dangers. It's time for us to establish boundaries for ourselves and our children. Now, like I said, I'm not a doctor. I'm not a digital expert. I'm a journalist. And what I've gathered from the legitimate sources that I use, which again, I'll put in the show notes, there are some things we can do first.   01:17:04:07 - 01:17:35:21 Erin Croyle The actual detox. This isn't easy, and in some cases it's not possible to do it purely right. We have work, our kids have school, whatever, but if it's possible, turn off your router for a weekend and just exist existing quiet or just play some music, but just chill it out. If you can extend that time for a longer, go for it.   01:17:35:23 - 01:18:05:05 Erin Croyle If it's not necessarily feasible for your lifestyle because you have to work constantly like I do. Shut it all down when you don't have to do those things. Take out the recreational, take out anything that is not a necessity. Even if a detox isn't possible, we can implement things in our day to day lives that can shift the way that we use smartphones and screens and eventually transform it.   01:18:05:07 - 01:18:32:04 Erin Croyle We're not really made for that. Think about it Having a device that can give you access to anything 24 seven that you can keep in your pocket is not natural, and it takes us away from interacting with people. And I don't mean to sound ableist because I know in some cases those phones or that kind of access is the only way we do interact.   01:18:32:04 - 01:19:01:12 Erin Croyle So there are differences. And that's what I mean by the benefits of this, right? Nothing is black and white. Everything is gray. But for our own well-being, we need to start limiting our use as much as possible. Really look at the notifications you get and think about if you need them in. Turn off what you don't need. Because every time you get that ping, every time your kid gets a notification that they got a like, it just sets off something.   01:19:01:12 - 01:19:29:13 Erin Croyle Their brain. It's a distraction. It takes us out of the moment that we're in. We're forever elsewhere. We need to start challenging the expectations that we should always be available. We're not doctors on call. We're not firefighters that need to come in for an emergency unless we are right. But seriously, challenge those expectations, because the more that we do, the more that that will become a norm.   01:19:29:15 - 01:19:57:12 Erin Croyle Set boundaries and expectations. If you're anything like me, I can't necessarily turn my text and ringer off because I need to be prepared if someone in my life needs me, like my mom or my son or something like that. So I can ask others to please not call or text in these hours. And when I'm awake and I can see my phone, I can turn the volume off, focus on what I'm doing and check my phone when I want to.   01:19:57:16 - 01:20:23:06 Erin Croyle Instead of having my phone check me and buzz me or vibrate me or whatever and examine your own recreational screen use and cut it down. A lot of us get reports on our phones that tell us how much time we're spending. Really look at those and say, Do I need to do that? I was shocked that I was spending 5 hours a day on my phone and then I saw that most of it was music from playing music in the car or wherever.   01:20:23:08 - 01:20:47:02 Erin Croyle So I didn't feel so bad. But really think about how much time you're giving to this endless void of social media that is completely pointless. Do you need to be on there or can you actually spend time with the people in your life and reconnect or make a phone call and call a friend? We need to start setting firm boundaries for our children.   01:20:47:04 - 01:21:26:20 Erin Croyle Their brains are not developed enough to understand what these devices are doing to them. Their phone based life is taking them out of people based living. Think about it. Do our children really need their own tablets? Do they really need their own smartphone? I remember when again, my kids have three kids in diapers. It was so hard and I would occasionally go to a restaurant after like my son's doctor's appointments and take them and just to get through it, I would give one of them a phone and they would share it.   01:21:26:20 - 01:21:47:13 Erin Croyle And then somehow you get a new phone and you have a phone that is just kind of there. And so I was like, All right, well, I'll try this and let one kid have one phone and two kids share a phone and they started fighting and crying about it at the restaurant. And I realized this is ridiculous. It's not sustainable.   01:21:47:15 - 01:22:16:03 Erin Croyle It's not okay. They're not learning how to interact at a restaurant. They're not learning how to behave properly. And I took it all the way and they turned it around because they can, because you set expectations. And again, I don't mean to be able to say about that. I do recognize that for some children that environment is difficult and for some parents, they need to get out.   01:22:16:05 - 01:22:53:12 Erin Croyle And that's the only way. And there's nothing wrong with that. But I'm talking about more generally, if it is possible, I get it. We're in this together. It's hard, but we also need to talk to other parents when we're helping our children. The wait until eight, meaning wait until eighth grade before you give your child a phone is a beautiful movement, but it's going to be really hard for parents to do it unless more parents get on board, because that whole What about or I'm the only one or everyone that me has won and it's really a struggle.   01:22:53:14 - 01:23:15:00 Erin Croyle So if we could get behind the weight until eight movement and more of us could do that, we will help each other to help our children heal. I would go even a step further. We know how dangerous social media is. Why do we have more flip phones and basic phones for our kids for the 40 and over set?   01:23:15:01 - 01:23:39:01 Erin Croyle I think most of us remember using pay phones to tell our parents we need them to pick us up. I think it's important that we really rethink this whole everyone needs a phone mentality. What if we started working towards having phones available for students to use so they can call home so they don't have to have a cell phone in school?   01:23:39:03 - 01:24:09:00 Erin Croyle Why does that need to be a necessity? Why can't there be more communal phones so we can cut out all that excess noise that we know is harming our children? Another important thing that we need to remember is that we are in charge. Adults need to lead. We need to let children know that this might feel like a punishment.   01:24:09:00 - 01:24:33:05 Erin Croyle This might stink. But guess what? I'm your parent. It's my job to take care of you. It's my job to keep you safe. And even though a phone or watching YouTube feels harmless to you, I know that it's not. And so this is in your best interest. And one day you will understand. For now, you can be mad at me and not like me.   01:24:33:05 - 01:25:02:08 Erin Croyle And that's fine. We have to do that. We're going to have to accept that our houses are going to be messier. We're going to have to start letting kids go play outside by themselves a little more instead of worrying about sexual predators. Because guess what? Most of the sexual predators aren't at playgrounds. They're online signs. And they know how to reach our kids and manipulate them and groom them online.   01:25:02:10 - 01:25:42:24 Erin Croyle You're better off sending your kid to the playground than handing them a smartphone and leaving them to their own devices. As consumers, we need to demand better choices. Parental safeguards are so confusing and so complicated that a lot of really smart parents I know have no idea how to set them up. We need to have better options. I cannot tell you how hard it is to find a simple watch that has no games that just allows my children to call or text.   01:25:42:24 - 01:26:23:24 Erin Croyle And that's it. Maybe music. Why can't there be really simplified basic choices, especially now that we have so much evidence about how dangerous smartphones can be and how hard it is to set up systems that children can't work around. Why don't we take that work out of it and just give them less because they don't need it? Children and teens need to interact and play and talk and be outside and be together and learn how to be human.   01:26:24:01 - 01:26:35:03 Erin Croyle Consumer voices are powerful, and when we start to demand what we want and need, it will start to be available.   01:26:35:05 - 01:27:19:14 Erin Croyle We have to demand better of companies to protect our children and stop placing all of the work on us because it is not sustainable. And frankly, it's not possible. We also need to start leading by example. Put your own phone away. Listen to the people around you. It was funny. I was talking to my mom the other day, who's very old school and very wonderful, and she used to always complain several years ago about how my brother's on his phone or so-and-so's on their phone, and people are always on their phone.   01:27:19:16 - 01:27:52:06 Erin Croyle And now I visit her, which is I get to only do a couple of times a year and guess who's on their phone? My mom. I'll literally be tr ying to talk to her in the morning and she's on games or on Facebook or whatever. Totally engaged and forever elsewhere. We have to lead by example. We have to be honest with ourselves about how addicting this is, even for grownups.   01:27:52:08 - 01:28:21:19 Erin Croyle And think about that. Think about how addicting it is for our minds that are fully mature. And then look at our children who are being raised on these devices. They don't know any better. We need to go to the dinner table and not have our phone there. We need to watch a movie and put our phone away. We need to be present whenever possible.   01:28:21:21 - 01:28:47:07 Erin Croyle You can't demand for your children to do it when you yourself aren't doing it. And look, I get it. It's hard. And taking screens away from our kids is going to make our parenting and our caregiving harder.   We have to work to change societal structures that have adapted shockingly quickly to the 24 seven information overload.   Even gas stations now have screens that start playing when you pump gas. I can't tell you how agitating it is to constantly have noise everywhere. I just think about how intolerant folks are these days to just kids being kids. I can't tell you how often I've gotten looks because my children are happily giddily goofing around in a very controlled way at maybe a waiting room at a doctor's office or at a restaurant.   And they get stares. And it's shocking to me because I want my children to learn how to interact and move. And I think we're just so accustomed to kids just staring at a screen quietly that we forget that people are supposed to be noisy. I think we need to learn how to be bored again. We all talk about mindfulness and meditation.   Well, guess what? Do you remember when we didn't have a phone in our hands all the time? And you can naturally have that just by waiting for the bus. You could take deep breaths. Now we're just on our phones. We're never spending any time, just naturally throughout our day, just being with ourselves. It is constant stimulation and we don't know how to just be.   Instead, we're taking courses and downloading apps to meditate. How about we just put our phones away and go sit somewhere or put some music on and take some breaths and get off the darn phone? I mean, I get it. I love guided meditation every now and then, but I also love not having my phone on. And I find that that is much more calming than a guided meditation will ever be.   But also, I just see the nervous system of my children, the constant need for something, and we need to just turn it off. We need to let people be bored. We need to let people learn how to twiddle their thumbs again, that calming sensation in our brain. It's really hard to find in a world that is constantly, constantly, constantly sending us notifications.   Finally, I think perspective is important. Are we in a mental health crisis? Yes. Is this an emergency? Yeah, absolutely. But we don't have to panic. We can start implementing small steps and supporting each other and working toward making this better. But we have to just start that movement. We can't sit and wait for the perfect plan or the perfect idea.   We can advocate in our own lives. We can advocate for our schools to stop allowing phones. It doesn't have to be black and white. It doesn't have to be all or nothing. We can start moving in the right direction with what we know now and figure it out as we go so we can start helping our children as parents.   We can send our kids outside as communities. We can support that and encourage that. Instead of judging or calling authorities, if you see a kid walking down the street, ask a question and make sure they're okay. Think about the things that are attainable in your inner circle and how you can help others as your circle expands. So if you have children like I do, who have neurodiversity and really need dopamine, and if they're not watching TV, they're going to be getting into some stuff.   Set up a corner that is where they can find all the crafts or all the things they need. Set up towels when they're going to make a water mess and just be prepared. We need to remember what childhood actually looks like. It's not quiet and clean. It's chaotic and loud and messy, and we need to allow for that because that's how children learn.   Siblings do argue. There is yelling. There is crying. There's laughing. There's noise. Let it be messy. Send them outside. Set up what works in your house. Take away devices if possible. If not, explore upgrading your router so you can monitor through there. So if your child has to do homework on a Chromebook and you don't want them up at midnight on YouTube, there are workarounds that can help you think about getting a landline back in your house and letting your kids use that to call each other and arrange to meet up.   Set a list of phone numbers on your refrigerator so they can actually call and get in touch. We really don't know where they're going online. I would rather know that they're at the playground or even at the corner store. Getting a bunch of candy would be better for them than spending hours in the endless void of garbage that they can find online.   Open up the dialog about how social media impacts them. Talk about the research that's out there and why you're concerned. It's not going to be easy to make these changes, but in the long run it will be worth it. We really have a chance to turn this around for the next generations and for ourselves. It's amazing how much better you feel in a matter of time.   The less time we spend online, the more time we have to actually be with each other, the more time we have to move and get fresh air and experience life. The better you feel. In general, it improves our entire quality of life. To just be present in our minds and be available to those around us in a way that's not constantly interrupted, forcing us to be forever elsewhere.   Thank you for listening. Please rate review, share and subscribe and tell me your detox goes. I'd love to follow up on this episode and hear from others who are bucking this new norm and trying to cut back on the screen use in their lives. I've also got plenty of other stuff coming up in the coming months. This is The Odyssey.   Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

In this epiosde we get an insider's perspective of the world of special education from someone who sees it from both sides.  Eleanor Janek is a dedicated special education teacher and a mother two two children with disabilties.  Her insight is both eye opening and incredibly useful for virtually anyone who is a teacher or a parent. The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: Here's a link to the Virginia Department of Education's Critical Decision Points resource that Eleanor talked about.            01:00:07:14 - 01:00:37:23 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the unique journey where sent on when a loved one has a disability. I started down this path in 2010 when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities.   01:00:38:00 - 01:01:05:17 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is, but we don't shy away from the tough stuff. For many of us, advocating for and navigating special education services is one of those hard things. But we often don't realize that it's no walk in the park for educators either.   01:01:05:19 - 01:01:21:16 Erin Croyle That's why I made it my mission to talk to a special education teacher who is also a parent whose children also have disabilities. Which brings me to today's guest, Eleanor Janek.   01:01:21:18 - 01:01:25:04 Erin Croyle Eleanor, thank you so much for joining me.   01:01:25:06 - 01:01:26:20 Eleanor Janek Thank you.   01:01:26:22 - 01:01:33:12 Erin Croyle Eleanor, can we start by you giving us a little bit of a background about who you are and what you do?   01:01:33:14 - 01:02:07:17 Eleanor Janek So I am a special education teacher in Virginia. This is my 16th year as a teacher, but my 25th year in education and I am 44 and I've been married for almost 19 years with two children. One is 16. She is deaf with cochlear implants and she has autism. And then I also have a seven year old who has ADHD and currently undergoing evaluations for autism as well.   01:02:07:19 - 01:02:15:19 Erin Croyle so you have quite the perspective. I'm curious what drew you to education and special education.   01:02:15:21 - 01:02:46:04 Eleanor Janek As a middle school student? I worked with students who had disabilities because mainly they were isolated from the general education students. So then I started working as an instructional assistant. When I was fresh out of high school. I was 19 when I started. So I was still, you know, pretty much a kid myself as an instructional assistant. But I had a career or established, you know, working with the school system, they say, is pretty much the best thing that you can do.   01:02:46:06 - 01:03:10:14 Eleanor Janek You get paid. You have your summers off. It's great, right? But then I quickly realized that without a college education, you did not get much respect from the educational community. So I pursued my degree in Psychology first and then my master's in education. So I've been doing I've been teaching special education for the last six years at a middle school.   01:03:10:16 - 01:03:38:05 Erin Croyle Eleanor, I'm really curious. You know, you mentioned to me before we were recording, you and I are very similar ages, and I think we have very similar experiences growing up in schools where even though special education existed, we never saw our peers who were disabled. We never really saw special education teachers. What was your experience growing up? Can you tell me what a typical classroom look like and then tell me what classes look like today?   01:03:38:10 - 01:04:09:20 Eleanor Janek Exactly like you just said. You know, our students with disabilities, the ones who had the more physical disabilities where you could kind of tell that they were different. One room all day long. Probably a special education teacher or an instructional assistant within that room with them. In my experience, as far as high school or middle school, you never saw students with disabilities or visible disabilities as they're now known in the mainstream setting.   01:04:09:22 - 01:04:35:11 Eleanor Janek I had a teacher who was my homeroom teacher who was a special education teacher. But other than seeing him in my home base, I never saw him out in the school anywhere. Whereas today, you know, when we introduce ourselves at the beginning of the year, we always introduce ourselves as teachers, myself and my general education partner. And we always tell the kids, you know, you're lucky.   01:04:35:11 - 01:05:00:11 Eleanor Janek You get two teachers in here, you're the bonus teacher represented in that way. But at the same time, now you see two teachers in a lot of classrooms where 20 years ago or almost 30 years ago when I was in school, you didn't see that it was just one teacher in the classroom. And our students with disabilities were pulled out into what they call a resource classroom.   01:05:00:13 - 01:05:16:14 Erin Croyle I mean, we still see a lot of students pulled out into self-contained and resource classroom today, but it's very different. So are you in a room then with co teaching and are you you're working together with the general ed teacher to adapt and modify curriculum then?   01:05:16:16 - 01:05:59:19 Eleanor Janek I am so I am primarily science. I do sixth, seventh and eighth grade science collaborative. More pull out happens at the elementary level and I'm at the middle school level, so I do work collaboratively with my teaching partners. For the past couple of years, I've been doing a schedule that's been kind of crazy and hectic as far as my teaching goes because I've been split into 45 minute chunks during the block and may only have one two at most three classes where I'm actually in the classroom for a full 90 minutes so I can have as many as ten classes in a two day period.   01:05:59:21 - 01:06:31:05 Eleanor Janek That's mainly because of the teacher shortage in Virginia and all states that are going on right now. I would love to have my full 90 minute classes back so I can work with my teachers for a full 90 minutes and my students for a full 90 minutes instead of doing 45 minute chunks or even 20 minute chunks, because that's what I ended up doing in two of my classes this year was working in one class for 20 minutes, going to another class for 20 minutes, going back to another class for 20 minutes.   01:06:31:07 - 01:06:34:03 Eleanor Janek It can get really crazy sometimes.   01:06:34:05 - 01:06:36:14 Erin Croyle That sounds like a lot.   01:06:36:16 - 01:06:38:07 Eleanor Janek And yes.   01:06:38:09 - 01:07:08:02 Erin Croyle Yeah. My understanding is to one of the one of the hurdles that special education teachers experience is a lack of planning time to really meaningfully do the work they need to accommodate these students. I'm curious what you see in the classroom and also how that shifted as we're in this teacher shortage. Was it easier before and now you're just hoping it will get easier again.   01:07:08:04 - 01:07:10:09 Erin Croyle Tell me a little bit about that experience.   01:07:10:11 - 01:07:40:18 Eleanor Janek So pre-COVID, all of my classes were 90 minute blocks. I had six classes and they were all 90 minutes. Since I am in the middle school setting, I do have the luxury of having a 90 minute planning block each day. Now, that being said, I also have six different teachers. Let me count. One, two, three, four, seven different teachers that I work with.   01:07:40:20 - 01:08:13:08 Eleanor Janek And it's only by luck of the draw that I might have a planning period in common with one of those teachers, maybe two. So a common planning period with them is not the norm for special education teacher, especially in science or middle school science, because sixth and seventh grade science do not have vessels. Eighth grade science has the flow that encompasses seventh and eighth grade science.   01:08:13:10 - 01:08:45:07 Eleanor Janek So the priority is not with science, unfortunately. It's kind of thing of the in my opinion and some of my general education teachers share this opinion that we're kind of the catch all sciences, the content that students with more significant disabilities can be placed in because it's supposed to be hands on learning and labs all the time in a place where they can socialize.   01:08:45:07 - 01:09:16:04 Eleanor Janek And that's a misconception with science. Like I said, pre-COVID, I got those 90 minute blocks during COVID. The county that I'm in was the only county in Virginia to be open full time. We didn't have any remote learning going on. We had an online school, but we were open full time. Kids were in the classroom. But our middle school students were in one classroom all day long, and they were rotated together.   01:09:16:06 - 01:09:42:06 Eleanor Janek They had the same electives together. They had the same lunch in the classroom with me. I was with them wherever every subject, all day long. I felt like I was the room mama of that calculus. After things got back to normal. Our middle school students weren't in the same classroom all day long, but they traveled with the same co-op of students.   01:09:42:08 - 01:10:21:14 Eleanor Janek Unless they had, like, a higher level math or language arts or they had a different elective. But for their core content classes, for the most part, they traveled with the same group to keep them kind of all together and when contact tracing was a big thing. But as COVID came in, I think teachers, especially during that shutdown, were seen as angels saving grace put on a pedestal because parents really got to see right what teachers put up with on a daily basis because they had their students at home.   01:10:21:16 - 01:10:47:02 Eleanor Janek During that shutdown from March till the end of the year. But then when different counties started talking about reopen and then it was kind of like the movement of teachers, let's make sure that teachers are safe before we reopen and then teachers were condemned for having an opinion. And that's when a lot of teachers started leaving the profession.   01:10:47:04 - 01:11:01:05 Eleanor Janek And it was harder before then or it was as hard before then. But it's gotten harder since COVID as far as there are so many teachers that have left the profession, even the ones that have 20 plus years.   01:11:01:07 - 01:11:27:07 Erin Croyle Yeah, I don't remember when that started happening, and I'm glad you brought that up because I think we've forgotten how our teachers, our medical community was lifted up and celebrated and then yeah, just dropped when they said, Wait, wait, wait. We want to be safe. Take it slow. But the rest of the world was ready to move on and we just kind of.   01:11:27:09 - 01:11:29:20 Eleanor Janek We dumped the kids back in the school.   01:11:29:22 - 01:11:30:13 Erin Croyle Right.   01:11:30:15 - 01:11:56:24 Eleanor Janek Right. And because teachers started sharing their opinions, and especially on social media platforms, Facebook, TikTok, everywhere, where we were trying to say, let's make sure that we're safe before we bring our kids back to school again. Because teachers started sending an opinion, parents started berating and condemning us.   01:11:57:01 - 01:12:07:11 Erin Croyle And if you're already burnt out and you already needed more planning time and more support before and here you are in this trial situation. Yeah.   01:12:07:13 - 01:12:50:01 Eleanor Janek And a fourth of the teaching population is special ed teachers. And when your special ed teacher population leave a student having an IEP is a federally mandated thing, whatever that IEP says the school system has to deliver that. There's no getting around it. And because you have your students with IEPs and you're trying to figure out how are you going to provide the appropriate service for them, I don't know if it was a state directive, a federal directive, or if it was just a local directive where we really had to deliver services based off the number of minutes in a student's right up.   01:12:50:03 - 01:13:04:12 Eleanor Janek And it was if this student only gets 20 minutes, I'm in a class for only 20 minutes. If this group of students has a 30 minute service, I'm only in that class for 30 minutes.   01:13:04:14 - 01:13:24:18 Erin Croyle Wow. Yeah. Yeah. You know, being on the other side of that IEP, you forget as a parent, as a caregiver, that you want all the minutes your kid can get, especially if there's issues with speech, reading, whatever. But the teachers only have so many minutes that they can give.   01:13:24:24 - 01:13:54:19 Eleanor Janek Right. And, you know, there's it's not just your individual student in that class. Especially students with IEPs. There could be anywhere from 5 to 10 to possibly 15 in a classroom at the middle school level. And you're expecting two teachers, the special education teacher, to deliver that amount of support and to also deliver those accommodations that are written into that IEP.   01:13:54:21 - 01:14:03:08 Erin Croyle Yeah, and a lot and that's a lot that falls on you as a special education teacher. I imagine.   01:14:03:10 - 01:14:44:14 Eleanor Janek Yes, especially with the amount of accommodations that students are coming up with from the elementary level that are more, I would say, elementary driven accommodations that parents want to continue to keep in place because they don't know what they what the expectation is at the middle school level. You know, when we get a new IEP for student that's come from fifth or sixth grade and we see some of the accommodations they come up with, we're like, holy moly, you know, this is something that was done in an elementary classroom because they were in an elementary classroom all day long.   01:14:44:16 - 01:15:00:18 Eleanor Janek But in the middle school class, we switch and some of those accommodations, like a desk check to make sure that they have appropriate supplies is not something that's feasible at the middle school level because they're moving classrooms and they're going to have a different desk in each classroom.   01:15:00:20 - 01:15:14:08 Erin Croyle Interesting. And that sounds like it's not just parents. It's the IEP team doing the middle school transition should be recognizing some of those things to pull them off now.   01:15:14:10 - 01:16:00:12 Eleanor Janek Well, usually we have someone, a senior teacher or a department head from the middle school that goes to the elementary school, but they may not always see that IEP ahead of time. They might see that IEP the day of it may not always be shared with them ahead of time. And when they go into the IEP meeting and there is the parent there, when they see how determined a parent is to keep a service or to keep specific accommodation, and then they hear the teacher side of it or the parent side of it, then that senior teacher or department head might be agreeable to that accommodation at that particular time.   01:16:00:12 - 01:16:30:16 Eleanor Janek At that particular IEP meeting, especially if it's early on in the fifth grade year ten IEP meeting happens in October or November, and it's not going to be revisited until October or November of the sixth grade year, then it may not be something that's on their radar or they might say, well, you know, we could see how that goes within the first quarter and then we can talk about it at the middle school as to whether or not that accommodation is appropriate for that student anymore.   01:16:30:18 - 01:16:52:05 Eleanor Janek But when we as case managers get an IEP and we see those level of accommodations that are more for an elementary school day versus a middle school day, we're trying to wrap our heads around how are we supposed to accommodate that student, if that makes sense?   01:16:52:07 - 01:17:14:09 Erin Croyle it makes total sense. And you have so many students and you also have students with five offers. And we're also seeing a mental health crisis in our students where even students without Final Fours and IEPs need more behavioral and emotional support. What is it like teaching right now for you and your colleagues?   01:17:14:11 - 01:17:43:18 Eleanor Janek Whac-A-Mole. Or putting out fires? There's more stopping and starting instruction because you're trying to answer questions from the student or answer you. Can they go to the bathroom or can they get water? Or can they go to the clinic? Or the student needs to get up and throw a piece of paper away or the student needs to get up and stand in the back of the room because they can't sit for so long.   01:17:43:20 - 01:18:17:05 Eleanor Janek You have your quote unquote, normal students that are in the mix in a collaborative classroom that could have, you know, so many students that have IEPs, so many students, like you said, that had survivors. But then as a special education teacher, I don't always know who has a father for I don't always know who might have a specific emotional need because my schedule is so different.   01:18:17:09 - 01:18:51:18 Eleanor Janek I may not be able to go to a team meeting of my sixth grade counterpart or my seventh grade counterpart where we get information on a specific need that a student might have. So I may not be privy to that information until my teaching partner tells me when they remember two weeks later. It can be extremely difficult to try to meet the needs of all of the different students in that classroom because the idea is that, there are two teachers in that classroom, so there's two sets of eyes.   01:18:51:20 - 01:19:17:14 Eleanor Janek Well, I've got one set of eyes trying to keep track of my students with disabilities while my other teacher has another set of eyes who is trying to direct instruction and trying to keep her eyes on the other half of the students who may not have disabilities or might have that five or four or might have those emotional difficulties that we have to deal with in the classroom.   01:19:17:16 - 01:19:40:03 Erin Croyle Or are just middle schoolers. I mean, middle school is the hardest three years of I think our public schools that age, you're going through so much. Your brains and bodies of these students are just in rapid development and the teachers are just I mean, even before the mental health crisis, it was triage. I remember middle school being miserable.   01:19:40:03 - 01:19:41:22 Erin Croyle I don't know about you, but.   01:19:41:24 - 01:20:07:15 Eleanor Janek There was a little difficulty. The timid little sixth graders who were, you know, still more like fifth graders. And they're coming up and they're still kind of afraid to show themselves because they don't want to get teased. They're also coming from an elementary school, one elementary school, and they're being pushed into a middle school that might serve three or four elementary schools.   01:20:07:17 - 01:20:29:17 Eleanor Janek You know, those feeder schools. They're shy, timid little sixth graders. And then towards their sixth grade year, they start telling those lines and then they get into seventh grade and things really start to blossom. And then when they get into eighth grade, they feel like, well, I'm almost in high school. I can do whatever I want.   01:20:29:19 - 01:20:49:02 Erin Croyle Yeah, it's it's so exciting to have you here because we have the perspective of you as a teacher and the perspective of you as a parent, and we get to hear about both. So I'm curious if your work as an educator prepared you at all for being a parent.   01:20:49:04 - 01:21:17:08 Eleanor Janek I really don't think that there's anything that ever prepares you for being a parent. You can read all the books you want to the what to expect when you're expecting all of the different publications that are out there on parenting. I really don't even think that being a middle school teacher prepared me for parenting, especially when we found out that my daughter had disabilities.   01:21:17:10 - 01:21:20:14 Eleanor Janek Nothing really ever prepares you for that either.   01:21:20:16 - 01:21:43:15 Erin Croyle Tell me a little more about that, because I know for me, you know, my son was born. I didn't know he had Down's syndrome until after he was born. And like you and I talks about going to school in an era where students with any sort of visible disability were segregated. Let's be honest. And they still are in many cases.   01:21:43:17 - 01:22:02:23 Erin Croyle And so I've said this many times, the first person I ever met with Down syndrome was my newborn son, and it was a lot. It floored me. So how about you? What was that like when you started seeing some of the complexities that your daughter had?   01:22:03:00 - 01:22:28:00 Eleanor Janek My daughter and my nephew are three and a half months apart. My daughter is the older of the three and a half months. So, you know, as a mother, especially as a mother who has the sister who had a child at the same time, you know, you're constantly comparing your development or their development to each other and you're told, don't compare, don't compare, don't compare, but you can't help it.   01:22:28:02 - 01:23:04:09 Eleanor Janek So my nephew, like I said, being three and a half months younger than my daughter, was talking at a young age. He was walking at a younger age. And I was fortunate enough that in the school that I work in, my sister, who is also deaf and has cochlear implants, had hearing aids when she was in school. So she had a teacher of the deaf then and it ended up being my daughter's teacher of the deaf was my sister's teacher of the day who was based at my school.   01:23:04:11 - 01:23:29:06 Eleanor Janek So I would be talking to her before we even found out that my daughter was deaf because she wasn't born deaf. She was a late onset death. So I would be talking with that teacher about things that my daughter was not doing, that my nephew was doing, and her constant reinforcement to me was don't compare. Every child is different.   01:23:29:06 - 01:23:54:12 Eleanor Janek Don't compare. But you can't help but do that specifically. As a parent who is a special ed teacher, I don't want to sound shallow here, but that's a special ed teachers nightmare. Maybe not for everybody out there, but that's what's my fear. I'm a special ed teacher and I'm going to have a child with special needs. Yeah, that was that was hard.   01:23:54:12 - 01:24:28:00 Eleanor Janek She was 27 months old when she got her first diagnosis as having a mild to moderate hearing loss. And I was told that hearing aids weren't practical for two year old. And I think I was just being told what I might have wanted to hear because language acquisition happened so much between the ages of two and five. And to be told hearing aids are not practical to put on a two year old, I will not repeat that audiologist name, but from that point on I did not trust her anymore.   01:24:28:02 - 01:24:33:18 Erin Croyle And that's interesting. Something similar happened to me where my son hearing loss is common with Down syndrome.   01:24:33:18 - 01:24:34:05 Eleanor Janek Right?   01:24:34:07 - 01:24:55:04 Erin Croyle And he was born in Malaysia. So I don't even know. I assume he passed his newborn hearing screening, but it was just such a traumatic time. I think that was the least of my worries. You know, we were apart. He was in the queue and the audiologist said, well, his hearing's okay in one ear.   01:24:55:06 - 01:24:55:23 Eleanor Janek Yeah.   01:24:56:00 - 01:25:03:16 Erin Croyle And you're a new parent and you don't know. And anyone listening who ever gets that advice, run and get a second opinion.   01:25:03:18 - 01:25:04:16 Eleanor Janek Exactly.   01:25:04:18 - 01:25:07:12 Erin Croyle Yeah. Because it's it's blatantly false.   01:25:07:14 - 01:25:30:02 Eleanor Janek They told me that she passed her newborn hearing screening, but they had to do it three times. And at the time I didn't question it. You know, I was a new mom. Yes. We have a family history for hearing loss. And, you know, my husband and I used to joke when she was in utero that we were going to have a deaf baby with ADHD and look what happened.   01:25:30:04 - 01:25:57:19 Eleanor Janek But you're just not prepared for anything like that, especially when the pediatrician comes in and says, know, she passed your newborn hearing screening. We did it three times and she passed away. We didn't think about it and never questioned it because of our family history. She had to be tested every six months until she was three, and she passed each time until she was 27 months.   01:25:57:21 - 01:26:20:24 Eleanor Janek And that's when they found out her hearing loss was mild to moderate. It's kind of going back to my nephew because she wasn't progressing like he was. The recommendation was that she'd go into early intervention and she had not been diagnosed with the hearing loss for the recommendation for early intervention. That was afterwards. So it was a little surprising.   01:26:21:01 - 01:26:40:19 Eleanor Janek And as they progressed, early intervention wanted different evaluations done on her because she aged out at three the day she aged out of early intervention and I signed the paperwork that, as was the day I found out that she was completely deaf and she was a candidate for bilateral cochlear implants.   01:26:40:21 - 01:26:42:00 Erin Croyle Wow.   01:26:42:02 - 01:26:54:10 Eleanor Janek So I literally went from the hospital where she had had her ABR and CT scan to the elementary school to sign her out of early intervention services.   01:26:54:12 - 01:27:00:19 Erin Croyle And for anyone listening ABR, I know what this is, but can you tell folks what ABR is?   01:27:00:21 - 01:27:26:00 Eleanor Janek I'm not exactly sure what ABR means. I'd have to look that up, but essentially they do brain scans. They hook those little electrodes up to the baby's head and then they put ear buds in the baby's ears and they send sounds and tones to see if there's any reaction on a brain scan. And if there is a reaction, then they know that the child is hearing.   01:27:26:02 - 01:27:41:24 Eleanor Janek If there isn't a reaction, then they know that something is wrong and they did the CT scan on top of that to make sure that there was nothing blocking her ear canal that would prevent any sounds from going to her brain.   01:27:42:01 - 01:28:10:18 Erin Croyle Wow. Okay. And ABR stands for I had to look this up because I can never remember either. By the way, auditory brainstem response because behavioral testing on a two year old is not necessarily accurate. What is a condition, if you don't mind sharing that can cause hearing loss that that significant that quickly is in this condition that a genetic condition of some sort because again our listeners might experience something similar and not know what it is.   01:28:10:23 - 01:28:40:02 Eleanor Janek Honestly I don't know. My sister had genetic counseling done before her and her husband were considering having a baby. There is a chromosome and I think it's connects us 26. I don't know if that's a current event or genome, but that is typically the abnormality that would cause deafness that is known. There are several other genes that could cause deafness.   01:28:40:04 - 01:28:46:14 Eleanor Janek It's just with mapping of the human genome. They haven't found all of the causes for everything yet.   01:28:46:20 - 01:29:03:18 Erin Croyle Okay, Thank you. That helps. That helps so many others out there. So, Eleanor, on the flip side of all this, you've been through so much with your children. Tell me how being a parent has informed your work as an educator.   01:29:03:20 - 01:29:45:13 Eleanor Janek I think there's pros and cons about that. And I have one colleague that often reminds me when I'm thinking about stuff as an educator. She often reminds me, Hey, would you want that done to Georgia? And then I have to pull myself back and think, No, I wouldn't want Georgia to have to go through that. So I have to change my way of thinking because, you know, typically as a teacher, someone a kid comes up to you with a question and, you know, if it's something that a kid can honestly do on their own, you're just like, go back and reread the directions.   01:29:45:15 - 01:30:07:15 Eleanor Janek Something as simple as that. But as a parent, I have to put myself in that situation and say what? I want my daughter's teacher to tell her to go back and read the question when she honestly may not know what she's reading, if that makes sense. I don't know if that completely answers that question.   01:30:07:17 - 01:30:12:00 Erin Croyle I think that's an example of what I'm asking. Yeah.   01:30:12:02 - 01:30:49:20 Eleanor Janek As far as knowing the IEP process, you know, being a special ed teacher, I have that inside look at both sides of the table when I'm writing a draft for students IEP or when I'm trying to come up with an alternative assessment for student who may have a disability. I kind of think my daughter first, like, is this something that I think my daughter could do before I present it to one of my students or in an IEP?   01:30:49:22 - 01:31:07:17 Eleanor Janek And I know that no two students are alike, but I think of it in terms of is this something that I would want my daughter to do as she gets older or something that I want my son to do as he gets older? And that's kind of how I kind of filter my way through it.   01:31:07:19 - 01:31:30:17 Erin Croyle Interesting. So let's talk more about the relationships between parents of children and disabilities and their school teams. I mean, you get to see both sides of this. So how has your perspective changed since becoming a parent in those meetings where you're working with families to develop IEPs or change accommodations?   01:31:30:23 - 01:32:19:18 Eleanor Janek I think that I often maybe sometimes more often than I should bring my personal not feelings, but personal experiences into it. When we're sitting around the table working through the IEP draft and talking about goals and accommodations, and as a parent start to maybe question why this goal or why this accommodation, I think I find it kind of humbling when I can bring a personal experience, I can say, Well, my daughter also has an IEP or my son also has an IEP, and I feel like this is to benefit your child because this is how it works for mine.   01:32:19:20 - 01:32:45:23 Eleanor Janek Bringing that those personal experiences in has helped me to be a better teacher because I feel like I'm going through some similar things that a parent on the other side of the table might be going through, or I feel like I can explain things a little bit better to that parent on the other side of the table, having gone through it myself.   01:32:46:00 - 01:32:54:21 Erin Croyle That makes complete sense. I mean, even if we try to leave our personal experiences on the other side of the door, you can't help but bring them in.   01:32:54:23 - 01:33:19:05 Eleanor Janek Right? You know, I used to think about the parents who would always do or the colleagues who would always brag about their kids or talk about their kids so much and was, I have to hear another story about this child. But then would you become a parent yourself? You understand that it's not that they're trying to brag or it's second nature, you know, example.   01:33:19:05 - 01:33:26:23 Eleanor Janek That's the way that their brain is wired right now. Because you say something and it triggers a memory and they just have to get it out.   01:33:27:00 - 01:33:49:00 Erin Croyle Yeah, Yeah. And I think that, you know, when we're thinking about IEP meetings, it's such a strange place to be. The dynamics there as a caregiver, if you're not familiar with it. I mean, by the time you're seeing people in middle school, a lot of them are probably have been doing it a while. But there are trust issues because so often a lot of parents are aware of that.   01:33:49:02 - 01:34:29:23 Erin Croyle Schools, it costs money to educate students with priorities. And so as parents, you're going in there making sure you're fighting. There's this dynamic of talking about how competent and great your kid is, but also you have to focus on some of the deficits, which are heartbreaking. It's this constant balance. And I think unfortunately, as parents, we're sometimes sort of pushed to not trust and to feel as this school, the school side of the IEP team is is maybe in it for the schools and for the teachers and not for the students.   01:34:30:00 - 01:34:51:00 Erin Croyle What what is your take on all that and how do you feel that as a teacher going into those meetings, making sure that you have enough time and resources to give the students what you need? But then on the other side of it, how do you feel as a parent when you're going into those meetings to advocate for your own children?   01:34:51:02 - 01:35:18:11 Eleanor Janek So we kind of do two things for that, because with my daughter when she was and like I said, the day she aged out of early intervention was the day we found out that she was aging out of early intervention, put her in to quote unquote, regular school. She no longer had individual family support plan with early intervention.   01:35:18:13 - 01:36:08:01 Eleanor Janek She had IEP with the public school system. So I didn't have to fight when she was younger to get that IEP. For me, even as a teacher, I didn't see the hostile side that it could be or as a parent because I didn't have to fight the school system at that point to get her an IEP, move that down a couple of years later, where as a special ed teacher during that teacher week, we are supposed to contact our parents, our caseload kids that they would be called and just kind of introduce ourselves to who we are, what we do, what we're going to be doing through the school year.   01:36:08:03 - 01:36:43:18 Eleanor Janek And I used to tell parents that my goal as a special educator was to give kids the tools that they needed to without special education services, because that is ultimately the goal. And I did that during teacher Week. And on the other end of the phone, the parents started arguing with me and cussing me out because their child had just gotten the IEP and I was not under any circumstances taking that away from their child.   01:36:43:20 - 01:37:14:11 Eleanor Janek That was not my intention. My intention was simply to call, introduce myself and tell what my philosophy was. In that short phone call after we hung up, the parent was up at the school wanting to meet with me, wanted to have it out with the principal, all because I said that my goal was to give her child the tools that he needed to be successful so that he no longer required special education services.   01:37:14:13 - 01:37:51:15 Eleanor Janek I did not know the back history of what that parent had gone through until the parent told me. So I think that that shaped my way of I'm no longer calling a parent and saying that, right, toothpaste, I want that to ever happen again. But being on the other side of that, because like I said early on, I had absolutely no problems with my daughter or her getting an IEP or services.   01:37:51:17 - 01:38:17:09 Eleanor Janek But fast forward five years later when she was in fifth grade and I thought that my daughter was the perfect candidate for a functional curriculum. We did have some issues when she was in first grade where they wanted to do a reevaluation on her and they wanted to give her a whole battery of testing and they were testing for an intellectual disability.   01:38:17:11 - 01:38:41:06 Eleanor Janek No way. My my daughter's deaf and she's in first grade. There's no way you can test and diagnosed her with an intellectual disability. Sometimes a student being deaf can mimic those types of behaviors because they don't know any better, especially early on. And I was very adamant that she was not a child who had an intellectual disability, and that was in first grade.   01:38:41:08 - 01:39:14:14 Eleanor Janek But then in fifth grade, her teacher came to me and said, you know, we got to talk. What are you thinking for next year? And I said, She needs a functional curriculum. She needs to learn life skills. She needs to learn basic skills on how to care for herself and the teacher. Absolutely. She absolutely agreed with me. So that whole year of her fifth grade year, I was thinking that she was going to be going into a functional curriculum when she got to my school.   01:39:14:16 - 01:39:41:09 Eleanor Janek And then we had her IEP in March and BAM, they didn't want her in a functional curriculum. They said she didn't have the label to be in a functional curriculum. But I think as a parent, we know our kids the best. We know what they're capable of, at least in the home setting. We may not see them in the school setting, but we know what they're capable of in the home setting.   01:39:41:13 - 01:40:12:06 Eleanor Janek And in my opinion, she needed a functional curriculum. And at that point I had already hired an advocate and I was a special education teacher in my school system. And here my school system was fighting their own special education teacher for services for her child. So there are definitely pros and cons to being the parent and then being the teacher.   01:40:12:08 - 01:40:51:03 Eleanor Janek And then I have to be reminded by my own mother that you are a parent first and you are a teacher second. And sometimes you have to bring the hurt out because you need to make sure that the school system sees you as a parent in that situation and not as a teacher. And that's really what an advocate has done for me, too, has allowed me to separate myself to be a parent at her IEP meetings instead of being a teacher and to remind the school system that I'm there as a parent.   01:40:51:05 - 01:40:53:14 Eleanor Janek Right? Not as teacher.   01:40:53:16 - 01:41:04:18 Erin Croyle For anyone listening when we say functional skills, you know, in some places they say life skills or assistance with activities with daily living. That's what you're referring to, right?   01:41:04:20 - 01:41:32:01 Eleanor Janek Yes. And learning job skills, because, I mean, yes, we can do laundry. We can learn to cook here. But I'm sure, as many people know, middle schoolers are like toddlers sometimes and they don't listen to their parents and they're certainly not going to listen to their parents when they're trying to teach them things. But they have a different reaction to teachers.   01:41:32:03 - 01:42:06:04 Eleanor Janek So my hope was that if she got into a more functional curriculum, that she would get those skills from the teachers, that she wasn't learning from me and they wanted to put her in a general education classes, collaborative classes, but general education classes with no aid, with no assistance and completely felt track.   01:42:06:06 - 01:42:08:17 Eleanor Janek And I didn't agree with that.   01:42:08:19 - 01:42:22:00 Erin Croyle Right. And so, well, again, for anyone listening and you mentioned this earlier, it's standards of learning. So that's, you know, achievement based diploma high school sort of effort. Correct?   01:42:22:02 - 01:42:40:24 Eleanor Janek Yes. Right. They learn a set of information or set of standards over the course of the year. And then at the end of the year, they're given this big test that basically sees what they've learned. And then schools get accreditation based on those. The percentage of passing for that test.   01:42:41:01 - 01:43:28:04 Erin Croyle You bring up such a tough conversation that so many parents, I think, struggle with and you have the unique perspective as a teacher. And it's interesting to hear you say they wanted to test for intellectual disabilities and look to that label and then flip side with middle school. You're looking more to functional skills, life skills. And I know what happens in a lot of cases is that oftentimes schools do pursue that intellectual disability label, that ID label, and then will use that to put students into self-contained disability ID classrooms, multiple disabilities, classrooms, things like that as early as elementary school.   01:43:28:05 - 01:44:03:06 Erin Croyle Right. What's interesting to me hearing you say this is that my son having Down's syndrome and ADHD and hearing loss and a whole bunch of stuff, but everyone sees Down's syndrome when they see my oldest child, when we were entering out of early intervention, he automatically qualified for this reverse inclusion model of public school pre-K. And then when it was time to transition to kindergarten, it was different for me, whereas I had to fight it.   01:44:03:08 - 01:44:15:13 Erin Croyle He was the first student in his elementary school in Northern Virginia to be in a general education classroom in kindergarten.   01:44:15:15 - 01:44:16:08 Eleanor Janek wow.   01:44:16:10 - 01:44:51:06 Erin Croyle Right. And so when we think about the labels that our children have to endure and the implicit bias and the ableism and all of the things that dance where we're going into these meetings, depending on the school's mindset and philosophy toward inclusion and disability and intellectual disability, you just don't know. And so you're going in there with like metaphoric body armor on IEP meetings with my son were painful.   01:44:51:10 - 01:45:00:13 Erin Croyle There's no reason for students to be separated in kindergarten. I mean, that is kindergarten. There's some learning, but a lot of it's life skills.   01:45:00:15 - 01:45:27:03 Eleanor Janek My eligibility meeting with her, she had already had the label, the D D label that they'd come out of with in preschool. They age out of that D d label around seven or eight, and they have to be given a regular label, a specific learning disability ASL D label or an h r label for attention, other health impairments or an H.R. label for hearing impairment.   01:45:27:04 - 01:45:58:19 Eleanor Janek They have to be labeled into a category to receive funding from the federal government. And when they were trying to label her as D, I took her to Maryland, to the Kennedy Krieger Institute for the Dream Clinic to have assessments done. And I was not impressed with the doctor who completed the assessment on her at all. According to a medical diagnosis, she was medically diagnosed with an intellectual disability.   01:45:58:21 - 01:46:20:06 Eleanor Janek Yeah, I had my daughter's audio verbal therapist look over the testing. She concurred with me. She was like, Yeah, this testing does not agree with Georgia, and I wasn't sure whether or not I wanted to turn that testing over to the schools because they weren't sure what they were going to do with it. Were they going to use it for me or use it against me?   01:46:20:08 - 01:46:56:16 Eleanor Janek And I had her look at that. I had my advocate look at that. And he also looked at the criteria sheet in my county for an intellectual disability. And he goes, go ahead, turn it over to them according to their own criteria. They can't label her with an intellectual disability right. But I will tell you that eligibility meeting lasted 2 hours and the first hour was incredibly hostile because we were going over the different testing that they were using to assist her with the intellectual disability and her achievement and performance match up.   01:46:56:16 - 01:47:22:07 Eleanor Janek That was her saving grace. She had a very high score on, I believe, visual spatial reasoning, but then she had a very low score on everything else. But because she had such a discrepancy in her scores based on their own criteria sheet, they could not label her with an intellectual disability. But that was the first thing that they went through and that took an hour to go over all of the testing.   01:47:22:09 - 01:47:47:04 Eleanor Janek And my mom was with me and she had to leave after that first hour after they said, okay, she's not eligible for intellectual disability, I said, okay, let's get the paperwork for it. So they going, Come on, let's go outside, wherever you need. I mean, that first hour was such a nerve wracking first process because I knew she wasn't.   01:47:47:04 - 01:48:17:19 Eleanor Janek I'd be I told everybody who did assessments or did evaluations on her. She wasn't ID And I told them at that point, if you find her eligible for I.D., I will refuse to sign the paperwork. So they already knew ahead of time. But there was that hostility back and forth between them and between me because what I had been told was it was her second year in kindergarten and she really wasn't making any progress.   01:48:17:21 - 01:48:41:05 Eleanor Janek So that was why they came to the conclusion that she could have an intellectual disability instead of stopping and thinking and listening to the teacher of the day. Right. That she is having typical behaviors of a student who is death, which mimic the behaviors of a student who might be intellectually disabled.   01:48:41:07 - 01:48:44:03 Erin Croyle Right. What age did she get the cochlear implants?   01:48:44:07 - 01:49:07:24 Eleanor Janek She got her first cochlear implant when she was three. She got her second when she was four and even her audiologist and the surgeon said that she was old for cochlear implant. She was a late implant because there was no indication over hearing this when she was a baby or when she was born or when she was too bright.   01:49:07:24 - 01:49:13:15 Erin Croyle And a lot of times because of that late diagnosis, there's delays in speech.   01:49:13:17 - 01:49:41:03 Eleanor Janek And she really bad articulation issues. She has mostly unintelligible speech. If you're not familiar or you don't understand her, I can't send her out in public to order at McDonald's without being with her because, you know, we have such a younger population now working in our restaurants who may not take the time to listen to her and try to understand her.   01:49:41:05 - 01:49:47:02 Eleanor Janek And she's going to be written off because she can't pronounce things correctly.   01:49:47:04 - 01:50:27:12 Erin Croyle Yeah, I similar with my son is down. It's very hard to understand him. And that is no reflection on his intellect. It's it's it's those those bias that are not yet that we cannot stop. I'm curious. Your son is younger and you said he has ADHD and you're in the process of having him evaluated for autism. I'm curious where you're at with this, because in my own experience, I missed a lot of signs with my daughter that they have ADHD because my older son's needs were so significant, I kind of didn't pick up on it.   01:50:27:12 - 01:50:46:13 Erin Croyle I blamed it on my parenting or how chaotic our lives are because of our lifestyle, if you will. So can you tell me a little bit about the process you've gone through with your son and how that's different and what you say as a teacher and as a parent?   01:50:46:15 - 01:51:11:16 Eleanor Janek Well, there is a significant age gap between my daughter and my son because, again, my daughter is 16, my son is seven. So it was debatable as to whether or not we wanted to have another child because we weren't sure if we wanted to go through that process all over again if something should happen that he was born death or became death at a later age.   01:51:11:18 - 01:51:35:13 Eleanor Janek But then we just kind of chalked it up to if he is a year and we've already gone through it, so maybe we can deal with it again. He was born with absolutely no problems with his hearing. The child hears everything under the sun, sometimes too much, but where he hears everything, he's also got a sensitivity and he can literally hear everything.   01:51:35:15 - 01:52:10:20 Eleanor Janek We did seek out early intervention services because in his daycare where he daycare preschool, he had a really difficult time transitioning to new things. He was more of a stands on the outside and watches. Then he was trying to go in and play even at three years old, he was still a little bit more immature than his same age peers and tended to gravitate towards younger kids to play.   01:52:10:22 - 01:52:36:11 Eleanor Janek I feel like he thought maybe if he went and played with the younger kids, then he wouldn't act so different. I don't think as a parent I'm any more aware with him and I was with her, but I don't think I'm also unaware if that makes sense. I think my experience with her kind of helped hone that, but I still don't know what the heck I'm doing.   01:52:36:11 - 01:53:01:00 Erin Croyle So I can relate to that very much. You know, a lot of parents have to shift their careers to be able to take care of their kids. Special DAY If you have a child that has a disability or medical complexities, do you think being a teacher allows for you to have the flexibility you also need to be a caregiver?   01:53:01:02 - 01:53:36:05 Eleanor Janek I think my particular situation allows me to be a little bit more flexible and I only say my particular situation because my daughter was a student in my school and I was actually one of my daughter's special education teachers, so I was able to be around her more. And when she was in the school setting, if something happened and she got sick or something, I was notified about it almost instantly.   01:53:36:07 - 01:54:09:12 Eleanor Janek But also, again, in my particular situation, and I have a husband who is a custodian at another middle school who has a different schedule than I do, and then I have a father who is retired as a custodian from my middle school and my mother, who is a bus driver. So in my particular situation, yes, being a teacher has allowed me to be a little bit more flexible because I have a good support system.   01:54:09:14 - 01:54:37:04 Eleanor Janek I don't think that being a typical teacher without a job that would allow you to be flexible, because I don't know if you've ever heard, but it's harder for a teacher to be out a day than it is for them to just come in. because a teacher who is out means that unless they have a reliable substitute, the kids may not get instruction.   01:54:37:06 - 01:54:59:19 Eleanor Janek It might be a free for all. They have to come up with some plans. They have to make all the copies that they need for those plans, or if there is a digital based platform, they have to make sure that everything in that folder we use a platform called biology. They have to make sure that everything in that folder is open and readily available for them.   01:54:59:19 - 01:55:10:00 Eleanor Janek Because if it's a substitute that we're not familiar with this, they can't just send us a text message and say, Hey, you forgot to open this assignment. Can you open it now?   01:55:10:05 - 01:55:11:20 Erin Croyle So right.   01:55:11:22 - 01:55:37:05 Eleanor Janek Yes. Being a teacher can be flexible, but not always to be a caregiver. And when a teacher misses time, that sets her students back. And then that teacher feels guilty about having to take off because now their students haven't gotten the instruction that they need. But yet you're trying to take off because you need to do things for your family.   01:55:37:07 - 01:55:55:11 Eleanor Janek So it's a catch 22 with the flexibility. Either you you take off and do what you need for your children or your family, or you don't take off because you have your kids at school who need you and you want to be there for them to.   01:55:55:13 - 01:56:13:04 Erin Croyle Well, that that gives me a follow up question. You know, a lot of times we'll hear people say, well, teachers, it's such an ideal profession. You get your summers off. Is there any sort of myth to that summer break? I mean, as a teacher, is it is it worth it being a a parent and having that summer off?   01:56:13:04 - 01:56:16:01 Erin Croyle Is it is it a good trade off?   01:56:16:03 - 01:56:47:03 Eleanor Janek Summers are wonderful, but a lot of parents are under the misconception that teachers get paid for their summers. If teachers get paid a specific salary for teaching, so say a teacher gets $50,000 a year, just a number that's being made up that $50,000 a year is being paid over 24 installments. So our contract might be for 207 days.   01:56:47:05 - 01:57:19:15 Eleanor Janek That salary is based off of 207 days. We get paid in the summer, but not paid for for the summer. And then teachers are contracted where we have to do professional development over the summer. We have to do contract our professional development and non-contract our professional development. So we have to give up anywhere between three and five days in our summer to do professional development depending on the county that you work for.   01:57:19:17 - 01:57:24:11 Eleanor Janek So, yes, Happy Summers. All right. Is wonderful.   01:57:24:17 - 01:57:37:00 Erin Croyle Right? Right. So, I mean, you get your summers off, but there's a trade off because your salary, even though you're paid throughout the entire year, is a salary based on that ten month.   01:57:37:02 - 01:57:38:04 Eleanor Janek Right? Yep.   01:57:38:06 - 01:57:43:00 Erin Croyle Right. So it's a misconception to think like you are taking a cut in your salary.   01:57:43:02 - 01:57:54:16 Eleanor Janek Right? If I worked an actual 12 months in any profession and got paid for that 12 months, it would probably be significantly more than I make as a teacher.   01:57:54:18 - 01:58:00:19 Erin Croyle Right. Which is why a lot of administrators make more because they are working a 12 month year.   01:58:00:21 - 01:58:24:02 Eleanor Janek Right? My is a 12 month employee because he is a custodian. He gets paid his salary all year around. But a trade off for that is it's frowned upon. If we take a vacation during the school year, because after all, we're there for the students, right? In my county, teachers don't get vacation days. You're expected to take your vacation in the summers.   01:58:24:04 - 01:58:46:12 Eleanor Janek 12 month employees do get vacation days so they can take their vacation whenever they want. Now, would it be better for them to take it in the summer? Yeah, if they could. But they are allowed to take their vacation during the school year where teachers have to have special permission in order to take off time during the school year if they're going on some sort of extended vacation.   01:58:46:14 - 01:59:01:18 Erin Croyle I had a dad who only could take his vacation in chunks once a year. And it it changes the dynamic of how you function in the world and see other people outside of the education field. I'm sure.   01:59:01:20 - 01:59:06:01 Eleanor Janek Yes. Rates get hiked up in the summer, too.   01:59:06:03 - 01:59:16:15 Erin Croyle Yeah, exactly. And it's crowded. Yeah, it's yeah. You know, if you could do it all again. What what career path would you pursue?   01:59:16:17 - 01:59:39:21 Eleanor Janek Honestly, I don't know, because I've been in education over half my life. Like I said before, I'm 44 and I already have 25 years in education because I started at 19. I told my principal just a couple of weeks ago when we were having our end of year award assembly, you know, I whispered to her, I'm like, I only have five years, and then I've got my 30 and.   01:59:39:24 - 01:59:57:14 Eleanor Janek Then I might decide what I want to do with the rest of my life. And she just looked at me and she goes, You're not going anywhere. And actually, I don't know what I would do because like I said, for half my life, over half my life, it's been education, teaching. It's hard, but you really have to love teaching.   01:59:57:14 - 02:00:05:07 Eleanor Janek I'm not saying you always like what you're doing, but you do have to love teaching to stay in it.   02:00:05:09 - 02:00:32:02 Erin Croyle I do have one more question about when you pursue a special education degree, because my understanding is as a parent, as an advocate, as someone who is around, there's really a huge lack of information about special education and special education law for our teachers. Pursuing those degrees was that your experience?   02:00:32:04 - 02:01:00:09 Eleanor Janek Yes, I did have one class early on for my minor, and it was an intro to special education, and we did have to look at 88, 97, and we did have to look at fate, but we didn't discuss it in depth. You know, it was basically an individual education plan is federal law and whatever is written into it is something that you have to you have to do just because it's law.   02:01:00:11 - 02:01:17:05 Eleanor Janek But there's really no instruction or there wasn't when I was in college, really wasn't any instruction behind it. Yes, it's a law and yes, we have to honor it. But they didn't take you through all of the parts of the different laws.   02:01:17:07 - 02:01:35:15 Erin Croyle I mean, it explains so much because a lot of times if you have a strong parent advocate, they're going to know more than a graduating room. Yeah, I find that even in some cases, the directors of special education don't really fully understand the laws.   02:01:35:17 - 02:02:15:09 Eleanor Janek definitely. You know, they they give you a scenario and it could be a couple of paragraphs about a kid and they're like, okay, now write an IEP for this kid with nothing to go on. Just, you know, a couple of paragraphs of what may have prompted the kid to go through child study. And then you're supposed to write an IEP based off of that paragraph or two, and maybe there's some psychological testing or there's a social history or there's an educational record, but that's really all you're given.   02:02:15:11 - 02:02:38:16 Eleanor Janek At least that was my experience. I don't know how it is now. I don't know if they go a little bit more in-depth, But you're right, there are some directors who who don't know what they're talking about either. And I think we Virginia Department of Education, actually had a training for parents and educators earlier this school year outside of the school system.   02:02:38:18 - 02:03:05:19 Eleanor Janek And I went as both a parent and an educator, it was called critical decision Making Next Steps in Transition. And I think I learned a little bit more from that. I use it as a professional development, but I think I learned more from that about special ed Law and directions that my daughter could go in that, and I learned from anyone during the school year.   02:03:05:21 - 02:03:21:03 Erin Croyle Eleanor, if there is one thing you could tell parents out there listening who have to go to IEP meetings, you have to develop and maintain relationships with their teachers and their child's team at school. What would you tell them?   02:03:21:05 - 02:04:06:17 Eleanor Janek I would say as much as teachers may not want a parent hassling them throughout the school year, communication is the best thing if you communicate with your teacher or your child's team of teachers, that's fun. You know, teachers appreciate communication, but be nice. You know, we had so many unkind parents that communicate or email with us because, you know, your child is your child and you may think that your child is the only child.   02:04:06:19 - 02:04:30:17 Eleanor Janek I guess I would just want parents to understand that when we want to help your child, we're not there to hurt your child. We're not there to hurt their education. We're there to help their education. Just be kind. Teachers are people, too, and we have families that we want to help. And we want help. Your family, too.   02:04:30:19 - 02:04:44:20 Erin Croyle Yeah, we're all human, right? We all make mistakes. We all have bad days. We're all caring and that argument we had in the morning or a sick parent or whatever, and I think you're right, kindness is the way to go.   02:04:44:22 - 02:05:21:21 Eleanor Janek You know, if you want to establish an open line of communication with your child's teachers, that's fine. I, I can remember one of my IEP meetings I had, Eminem was in a magazine for the teachers. They also had a baby to pass around. So that was nice to. But, you know, anything anything being kind is going to get you a whole lot more respect from your team of teachers than coming in with a hostile attitude.   02:05:21:23 - 02:05:51:19 Eleanor Janek Whatever happened before this school year isn't the school year. I had a parent meeting last year with a student of an eighth grader. And what really stuck with me was what the teacher said. You keep saying what the teachers did last year or what the teachers didn't do last year, where a new team of teachers and we're just getting to know your child.   02:05:51:21 - 02:06:18:10 Eleanor Janek You can't keep saying what those teachers did or didn't do last year and not give us the chance this year. The next school year is a new school year and it's a new chance for you to redefine yourself if you need to or for your child to redefine themselves if they need to, and just open an honest communication with your teachers or your team of teachers would be my best piece of advice.   02:06:18:12 - 02:06:30:23 Eleanor Janek Things are going to make people angry. But if you're honest and open and kind to your team of teachers, you're going to get to be more respected from them than you are. If you're not right on.   02:06:31:00 - 02:06:47:03 Erin Croyle I love that. Even if you disagree with your teachers, I would say nine times out of ten thing is you all have the best interests of your child. That student in mind.   02:06:47:05 - 02:06:47:20 Eleanor Janek Yes.   02:06:47:22 - 02:06:56:05 Erin Croyle There might be a disagreement on what is best, but It is still their best interests. I mean, I do believe that most teachers feel that way.   02:06:56:07 - 02:07:04:12 Eleanor Janek I don't think we would be in this profession if we weren't trying to look at the best possible opportunities for our students.   02:07:04:14 - 02:07:22:01 Erin Croyle Yeah, well, I appreciate you and I appreciate all the teachers out there who are helping our kids and who in many cases see our children more than we see them as parents throughout the year. Thank you, Eleanor.   02:07:22:03 - 02:07:29:10 Eleanor Janek No problem. Thank you.   02:07:29:12 - 02:07:53:01 Erin Croyle And thank you, listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate review and shaåre and tell us what you want to hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

In this episode, host Erin Croyle and guest Dr. Kathryn Rooth talk about just how much, or how little, medical professionals know about treating patients with disabilities.  Is there a topic you want to learn more about? Something you want to ask Dr. Rooth? Feel free to contact Erin via email.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.        TRANSCRIPT: 01:00:07:20 - 01:00:37:15 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. The creator and host of The Odyssey podcast explores the unique journey were sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities.   01:00:37:17 - 01:01:10:09 Erin Croyle This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is. While tackling the tough stuff to an unfortunate truth, many of us learn early on is how antiquated and ablest our health care systems can be when it comes to treating people with disabilities. Joining me today is Dr. Kathryn Rooth, board certified internist and pediatrician.   01:01:10:11 - 01:01:19:17 Erin Croyle She's also a strong advocate for people with disabilities and a mother of three.   01:01:19:19 - 01:01:25:06 Erin Croyle Kathryn, thank you so much for coming on. Can I call you Kathryn or should I call you Dr. Rooth?   01:01:25:08 - 01:01:29:20 Dr. Kathryn Rooth ERIN Of course you can call me Kathryn. We're friends. Thank you for having me.   01:01:29:21 - 01:01:43:04 Erin Croyle Thanks. Yes. Full disclosure, we're friends. But Kathryn is also just an authority on this, so I'm very excited to finally have you here. I want to start with your own journey. What made you want to become a doctor?   01:01:43:06 - 01:02:06:24 Dr. Kathryn Rooth It's kind of cliche, but I wanted to help people. As I got older and was in college, I took an interest in children with developmental disabilities and really wanted to advocate for them. I had this job where I worked for an organization that tried to integrate kids into the Boys and Girls Club who had developmental disabilities. That was my job.   01:02:06:24 - 01:02:23:02 Dr. Kathryn Rooth I really had no training, didn't know what I was doing as a college student, but I really recognized the need then and I took an interest then it kind of took off from there, like wanting to pursue something in the health care field and always kind of leaning towards becoming a doctor.   01:02:23:04 - 01:02:37:12 Erin Croyle I'm curious because with my own personal experience, I feel like my whole life I was so segregated from people with disabilities. What do you think drew you to helping people with it?   01:02:37:14 - 01:03:05:01 Dr. Kathryn Rooth I honestly, Erin, I don't know. I, I took psychology classes and so I kind of started learning about a lot of the developmental disabilities. And I thought it was very interesting and how underserved and vulnerable they were and really took an interest in that patient population that they kind of drove me in that direction. I wasn't sure if I was going to be a special ed teacher or something, but I wanted to do something with this population.   01:03:05:01 - 01:03:19:00 Erin Croyle And for so many of us, our understanding of med school, residency and beyond comes from television like Gray's Anatomy. Or if you're as old as I am, E.R. and Scrubs. So what is the process actually like?   01:03:19:02 - 01:03:46:04 Dr. Kathryn Rooth I mean, it's a long process. And first you have to get into medical school, which is incredibly hard. It took me on more than one occasion to apply to get in. And then once you're in, you do two years of lecture where you're in the classroom or you're doing a lot of basic sciences and chemistry pathology, and then your last two years, you're doing mostly rotations in different hospitals and clinics settings to kind of figure out what type of doctor you want to be, right?   01:03:46:04 - 01:04:07:16 Dr. Kathryn Rooth Because in medical school you're just becoming a doctor. And then once you figure out what type of doctor, then you apply to a specific residency. So I wanted to be an internist and a pediatrician, which was a combined residency. So then you apply to residency programs and depending on what type of specialty determines how long that training is.   01:04:07:16 - 01:04:30:03 Dr. Kathryn Rooth So mine was four years. So four years of medical school. Then you go through this very stressful match where you rank, where you want to go, and all the residency programs rank who they want, and then you kind of have this cluster and you hopefully get, you know, where you want it to go in your in your list, which I was fortunate to go to Baystate Medical Center and Springfield, Massachusetts.   01:04:30:03 - 01:04:52:03 Dr. Kathryn Rooth And I had a wonderful experience. So and I was there for four years. But essentially back then it was 80 hour workweeks, often 30 hour shifts every fourth day on a lot of the inpatient rotations. So it was exhausting. You know, they talk about like a firehose coming at you of information and knowledge and learning. That's what it was.   01:04:52:03 - 01:04:59:13 Dr. Kathryn Rooth It was just it was a great experience. I would do it again. I could not do it again. At this age, though.   01:04:59:15 - 01:05:04:06 Erin Croyle I mean, you're in school for so long and there's so much to learn about the human body.   01:05:04:08 - 01:05:05:05 Dr. Kathryn Rooth Yeah.   01:05:05:07 - 01:05:11:19 Erin Croyle Where does disability fall into all of that? And more specifically, intellectual and developmental disabilities.   01:05:11:21 - 01:05:30:10 Dr. Kathryn Rooth Right. So in medical school, I'm trying to think back it was a long time ago when I went to med school between 2004 and 2008. I don't recall very much at all, if any. No desk to my medical school, but I just think there was a lot of other priorities. I don't even want to say priorities, but just wasn't on the radar.   01:05:30:11 - 01:05:56:19 Dr. Kathryn Rooth I'm not sure exactly in residency because I was a pediatrician, I did get a good exposure to developmental disabilities, and I also picked electives in genetics and developmental disability rotation. So I chose to have more exposure to that because I was interested in that in my internal medicine side, not not that much.   01:05:56:21 - 01:06:24:18 Erin Croyle So I find it really interesting that you say that because, for example, growing up I was like a really healthy kid. I didn't even do annual well visits. I just did like vaccines and physicals. And as a young adult, the only medication I took was birth control. So my knowledge of anything and navigating medical systems was minimal. And then all of a sudden, as a first time mom, I have a child with Down syndrome.   01:06:24:19 - 01:07:00:01 Erin Croyle And he also had medical complexities. And I was thrown into navigating our health care systems on hyperdrive. I remember reading early on trying to find the right pediatrician for my son. It could be difficult. And I did find that because if a doctor didn't really care to understand and the differences in anatomy that come with Trisomy 21 or I think of all my friends whose children have even more rare genetic conditions, if there was no special interest there, the medical care really did lack.   01:07:00:03 - 01:07:12:07 Erin Croyle So, you know, as someone who works in this field, what would you recommend for parents who are just starting out navigating this, trying to find the right pediatrician?   01:07:12:09 - 01:07:37:19 Dr. Kathryn Rooth My heart breaks for people who can't navigate the health care system, who are not in the medical world and don't know how to navigate it, because it is a huge, daunting undertaking. You have to be comfortable with your doctor, right? I mean, when I relocated to a different city, I wasn't completely comfortable with the pediatrician. Like, I have to be comfortable with them, you know, I have to make sure they're hearing me so I change.   01:07:37:19 - 01:08:01:15 Dr. Kathryn Rooth It is okay to change doctors if you feel like they're not hearing me. My comfort level is not what it should be. Then it's okay to find a different fit. Pediatricians understand this. They're not going to connect with every single patient. They want you to find a good fed. Some pediatricians are better at certain diagnoses and others and sometimes even on their website.   01:08:01:17 - 01:08:17:13 Dr. Kathryn Rooth I'll look even now as a health care professional trying to find a specialist. What is their specific interest and is it ADHD? Is it autism? You know, is it this? And they're like, okay, this is what they are more passionate about. I'm going to try to see if I can get in with that one.   01:08:17:15 - 01:08:41:07 Erin Croyle Yeah, and I love that you brought up specialist, because I know this might sound ridiculous, but I just want to be honest about this because I'm sure I can't be the only one. I went to school. I am an educated person. I was worked internationally as a journalist, and then I was thrown into the medical system and trying to seek out specialists.   01:08:41:09 - 01:09:07:06 Erin Croyle You know, I didn't quite even understand their titles. They were so new to me. So, you know, I think pulmonology and endocrinologist and hematologist and I got endocrinology and oncology mixed up because it's just this entire new world of jargon. And as people who are not affiliated with, you know, the medical profession, a lot of times we're intimidated and we look to doctors knowing how much schooling they had.   01:09:07:08 - 01:09:29:01 Erin Croyle I've said this in the past where you look to doctors as if they're gods, and I find that you really, as a parent who has a kid with a disability, you really have to do the advocacy. You really have to speak up. You really have to know about your child's condition and you have to find specialists that will collaborate with you.   01:09:29:06 - 01:09:52:15 Erin Croyle Even now, my son is 14 and when I relocated, it took me four tries to find an EMT that would take my son's issues seriously and that I learned that the hard way early on when an audiologist said it's okay that he can't hear out of one ear, which is such an ablest thing to say because you would never say that to a non-disabled child.   01:09:52:17 - 01:10:10:11 Erin Croyle But there's still this bias that exists. What's been your experience in the field? And I know you can't throw colleagues under the bus or anything, but you know, what do you see in your practices? People's understanding of disability and potential dismissal of of issues just.   01:10:10:11 - 01:10:37:14 Dr. Kathryn Rooth Because of disability? So I'll just preface to say that we are not gods and we went to school for 8 to 12 years to learn this language. It's a whole different language, right? All of these allergies that most people don't know what a nephrologist is. And it is our job to translate the language right. We have to understand what is going on and then translate it.   01:10:37:16 - 01:11:01:12 Dr. Kathryn Rooth And I think, you know, our training often it's so heavy on learning the language that we failed somewhat and helping translate the language to the layperson, the non-medical person, a lot of the times to maybe they get defensive because they don't have the answers for you. Maybe this is out of their comfort zone and they don't know what to do.   01:11:01:18 - 01:11:20:05 Dr. Kathryn Rooth But I encourage parents to keep advocating if you know there's something wrong or you're not getting what you need to hear the answers and keep advocating. Like I always say, the parent knows the child best. If the parent comes in and says something's off, then I have to listen. I have to figure this out because they know them better than anybody else.   01:11:20:07 - 01:11:29:11 Dr. Kathryn Rooth Going to your other point of people with disabilities entering the health care system, I mean, we could have a thousand podcasts about this, Erin. You know, this.   01:11:29:13 - 01:11:32:17 Erin Croyle And we will.   01:11:32:19 - 01:11:58:17 Dr. Kathryn Rooth It's so hard. You know, this is something that I'm very passionate about because as a pediatrician, I became very comfortable with this subset of patients. But then they get older and they enter the adult world. And the adult world doesn't have a lot of experience with this subset of patients and their comfort level is very minimal. They just they don't have a lot of experience with this patient population.   01:11:58:17 - 01:12:30:01 Dr. Kathryn Rooth They don't really know what to do. The patient often can't communicate, they can't advocate, they can't tell them what is going on. They have to rely on the parents, which is not the norm in the adult world. And it's these complex congenital diseases that kids are surviving. They're surviving the same life expectancy as the general population. And it did not used to be like that.   01:12:30:03 - 01:13:00:24 Dr. Kathryn Rooth Genetic syndromes such as cystic fibrosis, they used to not live into adulthood. Right. And now they're living a much more longer, fulfilling life. And so a lot of the internal medicine docs never really trained having cystic fibrosis patients. And so now that they're in their patient panel or in their office, they don't have that training or that comfort level of knowing how to take care of them.   01:13:01:01 - 01:13:25:05 Erin Croyle It's interesting because I see that a lot with my friends who have older children where they speak about that transition out of the pediatric specialists to the adult specialists. And you're right, I mean, Down syndrome in the eighties, the life expectancy was, you know, 20 something. Now it's fifties and sixties and we're learning more and more.   01:13:25:07 - 01:13:50:17 Dr. Kathryn Rooth Absolutely. It's funny, I a lot of the pediatricians will say I'm just holding on to them and taking care of them for longer than I should because I know them best and they don't want to transition them into the adult world. Specialists do the same thing. I had a pediatric cardiologist, so who's taking care of adults because he's like, I'm I don't want to pass them off because I know how to take care of this congenital heart disease better than adult cardiology.   01:13:50:19 - 01:14:21:12 Erin Croyle Yeah. Kathryn, you know, you mentioned before being careful about what said and understanding things. There is so much outdated terminology that is still tossed around like m.r. I hear people say mental retardation or ma regularly, but also in defense of doctors. Actually, I think it's confusing if you're not in the inner circle of disability, the you know, person first versus disability pride language.   01:14:21:14 - 01:14:32:23 Erin Croyle Is there any professional development offered to doctors to keep up with what is current acceptable standards of our jargon in the disability world?   01:14:33:00 - 01:15:04:02 Dr. Kathryn Rooth I'm sure there is. I have not seen it or been a part of it. I mean, I know, Erin, I told you before we came on this, I said, you know, I right now predominantly work with the geriatric population. I don't really see any people with developmental disabilities anymore, unfortunately. So I haven't been out of it, of being aware of the correct terminology, because I feel like it does evolve and it has changed and EMDR is now ready.   01:15:04:03 - 01:15:28:06 Dr. Kathryn Rooth But is there something else that's more appropriate to say that I have not heard? So I said, Erin, please, I don't want to say anything that is insensitive or inappropriate because, you know, I just I'm afraid to use the incorrect terminology and be offensive. And so sometimes I don't say anything at all because I don't know what the right thing is to say.   01:15:28:08 - 01:15:55:02 Erin Croyle I love that we're bringing this up, though, because I've been with doctors who have said, Down syndrome kid, and I cringe because in the Down's syndrome community it is person first. But in the autism community, it's autistic children. And there's also, like I mentioned, disability pride. So it's like this dance where parents and advocates don't want to say anything and doctors are afraid of saying the wrong thing.   01:15:55:04 - 01:16:17:13 Erin Croyle So I how do we bridge that gap? Is there a way to have that conversation as a parent who's advocating for their child? Like, if I went in to see you and you said Down's syndrome patients are my favorite and I cringe, I mean, what would you want me to say? How can we have this be a better relationship to change together?   01:16:17:15 - 01:16:44:14 Dr. Kathryn Rooth Yeah, I mean, in my mind, that sounds okay to say that, but you're saying you cringe. So I want to know why is that making you cringe, saying Down's syndrome patients are my favorite and you can tell me. But I will also say you're probably exhausted, you're overwhelmed, right? You have a kid with special needs who needs a lot of specialty appointments, a lot of academic interventions.   01:16:44:20 - 01:17:02:23 Dr. Kathryn Rooth And you're at your wit's end. And this is probably the thousandth time that you've heard this comment and you snap and you are kind of like, are you kidding me? Like, really? You know, and I think that a lot of times the parents are at their wit's end when they get to our point. And it's frustration which we get.   01:17:03:00 - 01:17:18:04 Dr. Kathryn Rooth But maybe, you know, saying, I love that you love taking care of children with Down's syndrome and then explain why that makes you cringe, because I honestly have no idea why that would make you cringe. I love.   01:17:18:04 - 01:17:43:08 Erin Croyle This. This is so interesting. So I've mellowed out a little bit because I understand why go out and. No, no, no. So I've mellowed out because I've had to because there is so much in the world that is just so painful that I see happen to people with disabilities or set about. And I think I think that I pick my battles.   01:17:43:10 - 01:18:07:00 Erin Croyle That's kind of what it is. So if a doctor were to use MMR, like, for example, one time a therapist was talking about how hard it was years ago, loved this therapist and used the term m r a couple of times and I was just like, I wanted to correct them. But I also like, I just I'm so tired.   01:18:07:02 - 01:18:29:15 Erin Croyle Right, right. But now, at this point in the journey, I think that I kind of let Down's syndrome kid go or Down's syndrome patient. But if it's the R word I want and I focus on advocating for my child's health rather than all of the semantics, because I feel like sometimes we get so caught up in semantics that we can't see the forest for the trees.   01:18:29:21 - 01:18:54:07 Erin Croyle True. I mean, but I also feel like to say Down syndrome patients. So I think with that in why a lot of parents are touchy is because when we say person first, so many people see Down's syndrome and don't see the person. And so when you say Down's syndrome patients, it feels like you're saying, you know, they're all the same, which I know you're not.   01:18:54:08 - 01:19:05:15 Erin Croyle Right, but it's just the constant barrage of ableism that we see where it just feels like people just see the disability and not the person.   01:19:05:17 - 01:19:16:01 Dr. Kathryn Rooth So in the medical world, though, if I said I take care of it, so is it I take care of patients with Down's syndrome is better than I take care of Down's syndrome patients.   01:19:16:02 - 01:19:18:04 Erin Croyle Yeah, it's something that simple.   01:19:18:06 - 01:19:28:00 Dr. Kathryn Rooth Yeah. I mean, to me that that's that's very similar and pretty much the same as saying I take care of cancer patients. I take care of patients with cancer.   01:19:28:02 - 01:19:46:21 Erin Croyle This is the thing. I feel like we need to have more conversations like this so we don't get stuck in being pissed off about something that is not intended to be demeaning in any way, shape or form. But it's hard because we are constantly dealing with.   01:19:46:23 - 01:19:48:06 Dr. Kathryn Rooth A lot of ignorant people.   01:19:48:09 - 01:19:49:06 Erin Croyle Yes.   01:19:49:08 - 01:20:12:16 Dr. Kathryn Rooth Yeah. And I mean, I'm always correcting people in the health field always and will continue to when they use AMA. And I think every health care professional that knows the correct terminology should do the same thing. It's our responsibility to teach our fellow health care professionals the correct terminology in terms of patients with Down's syndrome and Down's syndrome patients.   01:20:12:16 - 01:20:35:05 Dr. Kathryn Rooth I see now how you word it, how it does affect you. In my medical brain, when I hear Down's syndrome, I start to think of all the medical issues that go along with somebody that has Down syndrome. I'm not thinking I'm not thinking that this is not a person. You know what I mean? It's just I'm automatically starting to go down.   01:20:35:07 - 01:20:38:17 Dr. Kathryn Rooth Down's syndrome, medical issues.   01:20:38:19 - 01:20:44:05 Erin Croyle Right? Trisomy 21, three copies of that chromosome and how that affects the body, the anatomy.   01:20:44:07 - 01:21:04:04 Dr. Kathryn Rooth So I also they're creating a story for me when they're calling me. I have a Down's syndrome patient with this. You know, I'm already thinking, okay, that their immune system is not the typical immune system, their anatomy, if they ever need to get intubated. It is also not the same as an average person. I don't even the typical person a non down syndrome person.   01:21:04:04 - 01:21:08:00 Dr. Kathryn Rooth And messing this up right now, I'm getting nervous and.   01:21:08:02 - 01:21:31:01 Erin Croyle What this is but this so I don't you know I don't and I want to leave this in so let's keep going because anyone listening I do edit these podcasts. Yeah it's important to cut out some of the stuff, but these are the conversations that people are afraid to have, and I think we forget to think of intentions.   01:21:31:03 - 01:21:40:22 Erin Croyle Intentions are good, and sometimes we get so caught up in the semantics. Yeah. That you're thinking clinically.   01:21:40:24 - 01:21:42:02 Dr. Kathryn Rooth Right?   01:21:42:04 - 01:21:59:20 Erin Croyle And so adding a preposition doesn't really matter, does it? When you're thinking clinically, whereas parents are coming in. And in the regular world we don't describe Bob is a diabetic man like we don't use that.   01:21:59:22 - 01:22:21:19 Dr. Kathryn Rooth Right? So if somebody called me and said, I'm seeing a colon cancer patient, you know, with this, it usually doesn't start off as I'm seeing a patient with colon cancer. That is how they usually say it. So you're right that we are saying it wrong when we say I'm seeing a Down's syndrome patient, I'm seeing a patient with Down's syndrome with this.   01:22:21:21 - 01:22:23:07 Dr. Kathryn Rooth Right.   01:22:23:09 - 01:22:39:10 Erin Croyle I don't know. I have to kind of wonder and if we were really going on a tangent here, but again, I love this. You have to kind of wonder because colon cancer ideally will be cured, whereas Down's Syndrome is part of that person forever. Cerebral palsy is part of that person forever.   01:22:39:12 - 01:22:58:11 Dr. Kathryn Rooth So yeah, but in the medical world you're saying what is relevant to the situation in the moment, right? And the answer is relevant in the situation in that moment with that person. Down's syndrome will always be relevant to that person in the medical world.   01:22:58:13 - 01:23:10:03 Erin Croyle Yeah. It sounds like there's not really an answer except for maybe just trying to offer each other a little more grace when we have conversations.   01:23:10:05 - 01:23:33:18 Dr. Kathryn Rooth Yeah, and I. I also want to recognize, too, like, we're in this post-pandemic make health care world where everyone is burned out and short staffed and overwhelmed. And I think people who work in the health care field want to say it correctly and do the right thing. That's why they are in the health care world. And a lot of it is just because we don't know any better or no one has told us, though, what you're not saying.   01:23:33:18 - 01:23:50:02 Dr. Kathryn Rooth It correctly. And so we need parents to kindly educate us because we are learning from you, Erin, You know, I text you all the time I had this situation. How should I have handled this? Because I want to do it correctly.   01:23:50:04 - 01:24:01:06 Erin Croyle Right. It's interesting, though, I think as parents and probably as doctors, am I right in that the way that our insurance systems work, you're really only supposed to see a patient for about 15 minutes.   01:24:01:08 - 01:24:02:00 Dr. Kathryn Rooth Correct.   01:24:02:02 - 01:24:26:15 Erin Croyle Okay. So in that 15 minutes, do I want to spend that time talking about my child's medical issues or do we want to get caught into explaining things that matter but really aren't pertinent to what's going on? I mean, especially as parents in that short amount of time. I mean, we need to discuss medical issues. I don't really want to get into a debate about person for disability pride.   01:24:26:17 - 01:24:33:22 Dr. Kathryn Rooth You're absolutely right. And honestly, this is the first time I've heard of Disability Pride and I love it. I've never heard that terminology.   01:24:33:24 - 01:25:01:02 Erin Croyle Well, it's the beauty of being part of this work and being so heavily involved is you get to learn about this and and what I love sometimes is I really try to push the boundaries and my son is disabled and my peers with disabilities have really taught me like disability pride. There's nothing wrong with saying I'm disabled. It is part of the human condition, is part of who we are.   01:25:01:04 - 01:25:03:07 Erin Croyle Why are we trying to hide it?   01:25:03:09 - 01:25:24:21 Dr. Kathryn Rooth Yeah, no, I absolutely agree. I'm kind of backtracking. But going back to the medical appointments, I will say doctors have their agenda of what they want to address. Right. They want to make sure your blood pressure is under control. They want to make sure the weight they have certain metrics that they want to address. And you're coming in with your own agenda of what things that you want to have answers to.   01:25:24:23 - 01:25:47:20 Dr. Kathryn Rooth So I would recommend especially, you know, parents with kids with disabilities because it is overwhelming. You get sidetracked, you get distracted, you're sleep deprived is right down. You know, at least three things that you have questions, your top three things that you have questions about so that you don't forget because our doctor, like you said, as 15 minutes, they're probably already behind.   01:25:47:22 - 01:26:09:04 Dr. Kathryn Rooth You've been probably waiting forever, so you're already annoyed and they're rushing around. So they want to make sure, okay, everything is good. Okay, good. Check, vaccines check. And you're like, wait, I have these questions that I need to have addressed. So coming in with your questions written down, I do that. And I'm a medical professional because I don't want to forget because they have their own agenda that they want to talk to you about.   01:26:09:06 - 01:26:25:09 Erin Croyle Yeah, I have to write it down, too. And I utilize my chart a lot because I have to, because there's just things that pop up in between appointments or I know that I'll forget. So I message ahead of time, things like that, to make sure that we cover all the bases.   01:26:25:11 - 01:26:45:05 Dr. Kathryn Rooth And it's good. I mean, the portals are very overwhelming, right? If you have more than one kid and you have three different portals with three different passwords for just one doctor, and then you add specialists for multiple specialists, and then that's like eight portals for one kid, you know, and that's just the medical side. You're not even talking the academic side.   01:26:45:05 - 01:26:47:22 Dr. Kathryn Rooth I mean, it's it's a lot.   01:26:47:24 - 01:27:10:03 Erin Croyle It is a lot. You're right. My son has I don't even know how many specialists right now. It's almost a dozen, I think. Thankfully, the my charts are kind of related and interlinked aside from the Nutrition's office. But it's really hard. And then you're dealing with as they get older, you have to get a proxy to access their my chart.   01:27:10:03 - 01:27:20:08 Erin Croyle Once they're a teenager. It's so much work. I mean, do you have any recommendations for families to streamline any of this?   01:27:20:18 - 01:27:43:07 Dr. Kathryn Rooth gosh, Erin, I wish I did. You know, keeping track in your phone as some sort of notebook, having all your passwords someplace. You know, really, you got to find a main hub, a pediatrician that's on it. Right. And that's going to help you navigate the health care system and kind of be your main hub of where you're going out.   01:27:43:08 - 01:28:11:23 Dr. Kathryn Rooth But really, it's a daunting task. I'm not a very organized person. And so putting it in your phone, putting it in a notebook, setting, it's cyber. You know, you're always going to have access to it, bringing it to every single appointment. So you have a list, a running list of what's been going on. You have your questions in advance, having separate notebooks for different specialists, you know, or bringing all the notebooks at this pulmonologist said to me about this because the cardiologist says it's the lungs and the pulmonologist says it's the heart.   01:28:11:23 - 01:28:16:00 Dr. Kathryn Rooth But this, you know, so you have all the information with you so you're prepared.   01:28:16:02 - 01:28:37:03 Erin Croyle Another parent, I know whose son has had a lifetime of just so much keeps kind of a one pager and updates it that has every medical condition and current medications that can be in a document that can be easily emailed or printed or whatever, because everyone seems to need that information, right?   01:28:37:03 - 01:28:37:13 Dr. Kathryn Rooth Yeah.   01:28:37:18 - 01:28:38:08 Erin Croyle List of.   01:28:38:10 - 01:28:57:13 Dr. Kathryn Rooth Patients. List of medical problems, List of surgeries. Lists of specialists. When the surgeries were a list of allergies, having that in a document and having it saved, presenting it and just giving them the copy because they're always going to ask the same questions what medications you're on, you know, any new allergies, you know, so you have it already.   01:28:57:15 - 01:29:32:07 Erin Croyle And then to I mean, this is morbid, but I, I handle most of my son's disability related stuff, which is practically a full time job between community based living, school medical stuff and so on. But what happens if something happens to me? That stuff that's in my brain is is just there. And so I think those documents are important to keep on a shared drive and and make sure the passwords are somewhere where whoever your co caregiver would be has it.   01:29:32:08 - 01:29:34:13 Erin Croyle It's so important.   01:29:34:15 - 01:29:40:11 Dr. Kathryn Rooth Yeah I agree. Yeah. And it puts a lot of responsibility on the siblings too.   01:29:40:13 - 01:29:42:12 Erin Croyle It is. I feel like that.   01:29:42:14 - 01:29:48:09 Dr. Kathryn Rooth That is a whole other podcast for sure. Yeah, I agree.   01:29:48:11 - 01:30:22:19 Erin Croyle You know, Kathryn, it's funny, I consider myself to be a pretty tenacious person. As I mentioned before, I had a hard time kind of navigating, figuring out what advice to take and when to find a new doctor or what specialists to find. And I remember when my son was way younger, he would get pneumonia and it was so bad he would be hospitalized and it would happen like he would be sick all year and he would have like two weeks right before his birthday, where he would finally have his lungs clear and be okay.   01:30:22:19 - 01:30:45:07 Erin Croyle And then I swear, every year, right on or right before his birthday, he'd get really sick again and we'd call it pneumonia Watch. And I got to a point where I really likes my son's pulmonologist, but I went in there. I mean, he'd be on albuterol and duodenum and round the clock breathing treatments and two antibiotics at a time and steroids.   01:30:45:09 - 01:31:10:08 Erin Croyle And he said, listen, I am done treating this. What can we do to prevent this? And it really it still shocks me that I had to ask that question. And by asking that question though, the doctor then said, you know what, we can check his IgG levels. And it turned out that he had deficiencies in his immune system.   01:31:10:14 - 01:31:43:03 Erin Croyle And by getting the infusions right, we've been managing that for many years now. And in that time we're learning more about how the extra copy of the 21st chromosome impacts the immune system and can make you go a little haywire. And we're still kind of on the cutting edge of learning that. But at any rate, I think it's really important for people to know that you really have to fight and you it doesn't have to be a fight, but you have to collaborate.   01:31:43:05 - 01:31:58:16 Erin Croyle And if your medical team isn't willing to collaborate, you need to find new people. And your experience, is that what you see as well?   01:31:58:18 - 01:32:17:19 Dr. Kathryn Rooth So yeah, he's coming in and he's sick, right? So our job is we want to make him feel better, more in the moment of a can. Acute illness, tunnel vision. Let's make him better. And maybe this is the first time I'm seeing this patient and there's a lot of providers that rotate in, so they're not doing this chart review to look back.   01:32:17:19 - 01:32:36:12 Dr. Kathryn Rooth Wow. Every three months this kid gets pneumonia, you know, and he only comes in when he's sick because we only have a 1050 minute time slot. We don't have a lot of time to do a chart review. So you're seeing a new person, same thing, antibiotics every three months, every three months. And you're tired, you're exhausted. You're not thinking, I'm going to go there when he's.   01:32:36:12 - 01:33:00:22 Dr. Kathryn Rooth Well, because I'm there all the time when he's sick. So amazing that you did that and you ask that question because you kind of took them out of their tunnel vision and allowed them to take a step back and say, yeah, like, let's let's figure this out. But that takes more time, right? And most of the doctors don't have that time because you're in a very constricted timeslot to address the acute illness.   01:33:00:24 - 01:33:24:07 Dr. Kathryn Rooth They're not really looking to be proactive when they have to be reactive in that visit. So going back to the go see your specialists when you're not sick to talk about these things, you know, to get on the same page of what can I do to prevent this from happening again, What do I need to do to keep them from continually getting sick?   01:33:24:09 - 01:33:28:11 Erin Croyle Yeah. And do you find that most doctors are willing to have those conversations?   01:33:28:13 - 01:33:41:11 Dr. Kathryn Rooth Yeah, I think so. I think they may not have the answers. They may not know, right? I mean, why? How do I stop getting strep throat all the time? A basic illness? I don't think there's really anything other than basic hygiene.   01:33:41:13 - 01:34:05:04 Erin Croyle Yeah. I think it's important to note for families and parents and caregivers that might be listening, you know, there are resources out there to help you navigate this. So the Center for Family Involvement, we have family navigators that we're not going to tell you what doctor to go to, but will reassure you that finding a second opinion is important.   01:34:05:04 - 01:34:24:15 Erin Croyle And we have 1 to 1 support where you can go over these things. And I think, Kathryn, you mentioned really collaborating with your pediatrician and finding one that really knows about developmental intellectual disabilities, but also maybe doesn't but cares enough to do the work with.   01:34:24:15 - 01:34:49:15 Dr. Kathryn Rooth You agree? Yeah. Even if it's related to a specialty that they may not have, you know, they sent you to you can still send them a message to collaborate. This is what the specialist told me. Do you agree with this? Does this make sense or I'm questioning it because of this? I mean, that is what your pediatrician is there for, to to support you and helping you make these decisions that the specialist is suggesting.   01:34:49:16 - 01:35:05:02 Erin Croyle Yeah. And they need to be aware of things that are happening with those specialists. And I think that's where my chart kind of comes in handy to just send updates when you get updates so they can update the chart even between your visits, right?   01:35:05:03 - 01:35:06:19 Dr. Kathryn Rooth Right. Yeah.   01:35:06:21 - 01:35:21:02 Erin Croyle I guess I guess my last question for you would be, I know your career is kind of evolving and changing along with our medical systems, which are, as everyone knows, super flawed here in the United States. But what would your dream job be?   01:35:21:10 - 01:35:50:00 Dr. Kathryn Rooth gosh. And so I love taking care of the most vulnerable. So if there was a way to take care of adults and children with developmental disabilities, the geriatric population and the dying population, in my mind, those are the most vulnerable people that need the most advocacy. And if I could create a clinic or a program that supported those people, that would be my thing.   01:35:50:02 - 01:35:51:13 Dr. Kathryn Rooth I would love that.   01:35:51:15 - 01:35:52:06 Erin Croyle I can tell.   01:35:52:06 - 01:35:53:17 Dr. Kathryn Rooth You that. I would love that.   01:35:53:17 - 01:36:27:01 Erin Croyle And I don't know anyone within my disability parenting group, if you will, that would not love that. My gosh, I maybe maybe someone's listening here and can help make that a reality because I feel like every state, every region needs one of those. We really need more effort of really caring and really being curious about our chromosomes are neurodiversity.   01:36:27:03 - 01:36:53:02 Erin Croyle Our genetic makeup impacts our overall health because I think that that's been left behind. And we're just starting to figure out that just because someone has an intellectual disability doesn't mean that that is what is causing a behavior or an illness or for them to shut down. It's it's it's so much deeper than what our eyes see, if you will.   01:36:53:03 - 01:37:11:20 Dr. Kathryn Rooth Yeah. Agree. And I would say to the parents that are listening to keep advocating keep correcting us and keep educating us because we need to learn and we need to hear your stories and we need to understand how to treat your children the way they should be treated.   01:37:11:22 - 01:37:31:14 Erin Croyle Thank you. And I'll add anyone listening. Kathryn, you're going to be on again. I know we're going to address some of these things that we didn't get to go into more today. And I can't wait. So anyone who maybe has a topic they want us to cover in our future conversations, please do contact me and the information do that is in my show notes.   01:37:31:14 - 01:37:33:06 Erin Croyle So thank you.   01:37:33:08 - 01:37:40:13 Dr. Kathryn Rooth Thanks, Erin.   01:37:40:15 - 01:38:04:11 Erin Croyle And thank you listeners for joining us. Please rate review, share and subscribe to this podcast of ours and let me know what you want to learn more about whether it's an issue for me and my friend Dr. Kathryn Rooth to explore or something else entirely different. Send it my way. There's no shortage of topics to cover, so feel free to add on to my long list.   01:38:04:13 - 01:38:11:01 Erin Croyle This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.    

Modern day parenting can be so isolating.  It's an unfortunate reality many of us are struggling with.  If you have a child or children with neurodiversity, medically complexities, or disabilities, it can feel downright lonely.  But you are NEVER alone in this journey.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:  Need to talk to someone? The Center for Family Involvement has family navigators ready to listen! They provide 1:1 emotional and informational support as well as community service and systems navigational support. These are volunteers with lived experience who are trained to meet families where they are.  Call or email our help line and someone will be in touch within 48 hours. If you live outside of Virginia, we can connect you with a sister network in your area. Helpline: 877.567.1122 Email: [email protected]   David Egan is an advocate, speaker, author, and extraordinary person who you can learn more about here.   John Franklin "Frank" Stephens is a disability advocate, actor, and athlete who penned this brilliant rebuttlle to Ann Coulter following her referring to President Barack Obama as "the retard" in 2012.   TRANSCRIPT: 01:00:07:17 - 01:00:37:00 Speaker 1 Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down  Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:37:02 - 01:01:05:13 Speaker 1 This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we've tackled the tough stuff, too. There's been a whole lot of hard in my life lately, so I'm changing it up. Rather than an interview, it's just going to be me. So without further ado, here I go.   01:01:05:15 - 01:01:32:23 Speaker 1 Parenting can be so isolating if you add disability, neurodiversity, medical complexities into the mix, it's often even more so. And it starts from the very beginning. When I was pregnant with my son. I remember so distinctly how excited my husband and I were when the doctor did the ultrasound and said, Everything's good. You have a perfectly healthy baby.   01:01:33:00 - 01:01:58:05 Speaker 1 And now I find the term perfectly healthy to be kind of triggering because what is healthy? My son is perfect. This was in 2010. So this was before we had all the blood tests that come now. The ultrasound didn't show anything of concern, and we went ahead and decided not to do the amniocentesis because there was a risk of miscarriage.   01:01:58:05 - 01:02:26:22 Speaker 1 And we just thought, okay, well, everything looks okay. There's nothing to worry about. We'll continue on. And I had this really lovely pregnancy and we were living in Malaysia at the time. So we traveled. We went to a friend's wedding in India and a babymoon in Bali and all of these wonderful, fun things. I just have the best memories and honestly, I'm really thankful for that because it was just this really great worry.   01:02:26:22 - 01:02:59:03 Speaker 1 Free pregnancy and all of a sudden at 39 weeks, his movement slowed and virtually stopped. It's interesting to me, though, I have this beautiful, beautiful pregnancy. I was reading all the baby books and all of the things and then poof, everything changed. My son stopped moving. We went into the doctor. We were told to have an emergency C-section.   01:02:59:05 - 01:03:27:01 Speaker 1 And because of all the things I read, it made me question all those things. And so I was thinking that I shouldn't have an emergency C-section. What if the doctor's wrong? What if the doctor just wants to have the weekend off? Because I think it was a Friday. It just set me up for so much more hurt than was necessary.   01:03:27:03 - 01:03:53:02 Speaker 1 This doctor was brilliant. She was able to calmly convince me to have this C-section and not to wait. She calmly stressed that waiting would be bad so that doctors saved my son's life. Had we waited, had I not gone in when he stopped moving and had we waited to try to push, Arlo probably would not be here today.   01:03:53:04 - 01:04:17:03 Speaker 1 When he was born, he was my first child, so I didn't realize until I had my other two children that the silence that we experienced after they got him out was actually eerie and scary. I was allowed to give Arlo a kiss on the head and they took him away and he went to the Nikko and I went to the recovery room.   01:04:17:05 - 01:04:42:21 Speaker 1 When I came to and was up in our room, room. The pediatrician came in and told my husband and I that he suspected that Arlo had Down syndrome. And this came as a total shock to us, just absolutely floored and honestly devastated.   01:04:42:23 - 01:05:10:16 Speaker 2 Which is a terrible feeling to have when you just had your first child. Arlo Having Down syndrome is one of the best things that ever happened to me. He has taught me more about life and myself and this world than I could ever imagine. But the fact is he is the first person I met in this entire world with Down syndrome.   01:05:10:18 - 01:05:49:02 Speaker 2 I was 33 at the time. I mean, that alone just felt lonely to have no understanding of what my child's life would be. And then sitting there while he was basically in a bubble with oxygen, reading about Down syndrome and learning about life expectancy and all of these things that our world considers wrong because we are so scared to say the word disability or celebrate the word disability or understand or accept or embrace it.   01:05:49:04 - 01:05:52:21 Speaker 2 And it's really frustrating to me in retrospect because.   01:05:52:23 - 01:06:39:03 Speaker 1 One in four Americans have a disability that impact their everyday life. Down syndrome is fairly common. We know more about it than a lot of other conditions, but yet we know so little about it. I know now because I've been in this for 14 years and I've been able to really think about things. Part of the reason it felt so devastating and so shocking is because we still segregate our world between people who are disabled and not disabled, especially when it comes to intellectual and developmental disabilities.   01:06:39:03 - 01:06:55:24 Speaker 1 Because anyone who speaks in an untraditional way and communicate differently and looks or behaves in a way that doesn't conform to what we think are societal norms is looked at differently.   01:06:56:01 - 01:07:24:16 Speaker 1 My son has Down syndrome. It's common, but he still gets stared at in stores and it stinks. I think about how this world is and how people look at my son and friends of his and friends of mine who have other disability sees and how my peers, adults my age, older and younger as well. They're in similar positions that I was in when Arlo was born.   01:07:24:18 - 01:07:56:19 Speaker 1 They've probably not had an actual meaningful interaction with anyone who's disabled. I'm certainly not anyone with an intellectual or developmental disability, and I think that's a challenge that we as parents of kids who have disabilities don't talk about enough. Not only are we learning to navigate the world with our child and for our child because we are our child's voice for the foreseeable future.   01:07:56:21 - 01:08:06:12 Speaker 1 And as much as I help my son advocate for himself, even at the age of 13, he doesn't communicate in a traditional way. He doesn't.   01:08:06:15 - 01:08:08:02 Speaker 2 Really.   01:08:08:04 - 01:08:44:16 Speaker 1 Care about a lot of the things that I'm fighting for for him. I don't know if he understands them or not. I am trying to help him find his voice. Until then, I am his voice and there is a lot of learning that we have to do as parents to be able to do that. Disability is such a separate condition that if you're someone who has never been a part of the disability community and you have a child with a disability, you have a tremendous learning curve.   01:08:44:18 - 01:09:02:18 Speaker 1 In addition to being that person's parent and learning how to be a parent. You also have to learn about the medical components that go into caring for your child, the community based living components that go with taking care of your child, which.   01:09:02:20 - 01:09:04:11 Speaker 2 My gosh.   01:09:04:13 - 01:09:58:13 Speaker 1 Are so hard to figure out. And they vary from state to state. There's early intervention, which is fabulous, but it varies from state to state, and you've got to figure that out. And then the schools. I still remember being at the farmer's market with Arlo when he was a wee one and a mother of an adult child with a disability, just coming to me and almost tearfully telling me how hard it was helping her child navigate the schools and said to me how she still feels the bruises from that time in her life because the schools just don't understand or don't have the funds or don't have the want to support students with disabilities.   01:09:58:15 - 01:10:53:24 Speaker 1 It's hard. So we have to learn all this new jargon and learn all of this medical staff and understand the finances of supporting someone for their entire life. And my gosh, the mounds of paperwork that you have to do. I have three kids. The paperwork for Arlo, because of his disability is three times as much as my other two children and then while we're doing all of this work to help our child and advocate for our child and help our child learn to advocate for themselves, we're also having to overcome and understand our own herbalism these things that are ingrained in us that we don't even realize are there because it's this societal weight.   01:10:54:01 - 01:11:16:23 Speaker 1 There's a societal weight that is put on the shoulders of people with disabilities, and it's ridiculous. And we don't call it out enough. And as parents, I'm not even sure we understand how significant this is until our children get older or unless we speak to adults with disabilities.   01:11:17:00 - 01:11:17:20 Speaker 2 Who.   01:11:17:22 - 01:11:51:00 Speaker 1 Can truly speak about their own experiences. If we really stop and think about it, our systems are set up to fix disability, not to accept it. Our mindset as a society, I mean not just in the United States but around the world, is that disability is something that we should overcome instead of accept and live with. We constantly see in the media how overcoming disability is celebrated.   01:11:51:02 - 01:12:18:16 Speaker 1 Oftentimes it's a physical disability that you see someone who maybe is an amputee and then they get prosthetics and they start running and they win races and they're back again. And that's great. But you know what? There are a lot of disabilities that are just here, and it's part of our existence. There are people who use wheelchairs who they don't care that they use a wheelchair.   01:12:18:18 - 01:12:38:22 Speaker 1 It's part of their life. They wouldn't change it. It's just who they are. And the thing that they would rather have change is the accessibility so they can go wherever they want, when they need to. And this mindset, I mean, it starts from the beginning. And as parents, it takes a while to come out of it. And some parents, I'm not sure ever do.   01:12:38:22 - 01:13:08:18 Speaker 1 But even in early intervention, a lot of what is taught is trying to fix a child or get the child to conform to societal norms. I remember how important it was to me that Arlo could communicate clearly, and I remember seeing these amazing people with Down syndrome early on. A friend of mine, David Egan, amazing speaker, right? He wrote a book.   01:13:08:20 - 01:13:39:04 Speaker 1 Brilliant guy. Frank Stevens, also a man with Down syndrome who is brilliant and my gosh, I'll put in the show notes his rebuttal to Ann Colter about the R word just absolutely perfect. And as a parent, you have these hopes and dreams and wishes for your child based on your experience. And so when your child's born, you still have those.   01:13:39:06 - 01:14:07:02 Speaker 1 And early intervention comes in and you look and you see potential and you want your child to reach their full potential. But not all of our kids are going to be Frank Stevens or David Egan or whomever, and not all of them want to be. And I spent so much time and energy and money in addition to early intervention, we did extra speech therapy and it was great.   01:14:07:02 - 01:14:46:10 Speaker 1 And the speech therapist, my gosh, I still love this woman and I need to reach out to her and tell her this because I miss her. But Arlo's 13 now, and you know what? I don't think he'll ever speak clearly. But there's only so much those therapies and interventions can do. There's so much emphasis put on that full potential component that as parents, I feel like it takes a while and you're so busy doing that and you're just thrown into this cycle of helping, helping, helping, fixing, fixing, fixing.   01:14:46:12 - 01:15:10:17 Speaker 1 And you're so busy being a parent and an advocate and a caregiver that you can't see the forest for the trees. And if I could turn back time, I would just do early intervention and I'd cut all the other stuff out and I'd take him to the playground and I let his brother have his naps and not have those be interrupted.   01:15:10:19 - 01:15:39:17 Speaker 1 And I would save all the money we spent on co-pays and take them on a vacation. But I can't do that, and I know that now, so I don't kick myself, but I feel like I should share it so other parents don't feel that need to do, do, do all the time. It's okay to stop and just enjoy your child.   01:15:39:19 - 01:16:18:19 Speaker 1 But no one's there to tell us that because we're trying to do the best for them in our mindset in this country about achievement and progress and growth. And for potential is so great that we're pushing, pushing, pushing. And you have to wonder what for, because life is short and there are some curveballs that come our way and we need to stop and experience some joy to.   01:16:18:21 - 01:16:54:20 Speaker 1 So if there's something we can cut out, we should. And if we as parents are so stressed and so lonely, then we should find our own network of support because a happy parent equals a happy child. I find myself since Arlo was born, always gravitating toward other parents who have children with disabilities because they just get it. We naturally understand how difficult it is.   01:16:54:22 - 01:17:02:16 Speaker 1 I can look at some of my friends and I see their face and I see their eyes and I see how tired they are.   01:17:02:18 - 01:17:21:16 Speaker 2 And I understand it because with significant disabilities, literally every day you're going up against something. It could be something as seemingly innocuous as there are no accessible spaces.   01:17:21:18 - 01:17:30:09 Speaker 1 So how am I going to get my child with a wheelchair to such and such place? Or there's bikes in the sidewalk.   01:17:30:11 - 01:17:54:19 Speaker 2 Or there's a school dance and my child doesn't even want to go because he doesn't feel a part of the school. It causes more anxiety to try to go to fun social things that you're supposed to really look forward to because people don't understand or accept or celebrate disability.   01:17:54:20 - 01:18:33:14 Speaker 1 I remember early on when Arlo was 81, family elders had all sorts of advice and one of them said something that if I could turn back time I have so many rebuttals for. But back then I just was so shellshocked. I just kind of took everything in and thought they actually maybe knew what they were talking about. They told me how hard parenting is and how there's always disappointment and expectations that are sort of shattered.   01:18:33:16 - 01:18:44:05 Speaker 1 And I just got that up front all at once at the beginning instead of throughout. And what a.   01:18:44:05 - 01:18:47:01 Speaker 2 Load of.   01:18:47:03 - 01:18:56:11 Speaker 1 So many expletives. Okay. Like that is the most ridiculous thing I've ever heard because.   01:18:56:13 - 01:18:58:14 Speaker 2 One.   01:18:58:16 - 01:19:45:00 Speaker 1 There's no disappointment. I like the disappointment I feel has everything to do with the world that is inaccessible and nothing to do with my son, who is absolutely amazing. And I still have wishes and hopes and dreams for him. They're different, but they're there. Yeah, there are letdowns, and it's not for my son's lack of trying. It's often because of the obstacles set up from an in accessible world, from a world that doesn't accept people with disabilities.   01:19:45:02 - 01:20:18:06 Speaker 1 And as parents, we see this every day. And I think sometimes I see my peers with disabilities handle this so much better because they're just used to it. Whereas I get angry and upset because that's my child. It's just it's interesting. And those are conversations I feel like we need to have. But you know that mama bear feeling you have when you have a child who is just marginalized because of their chromosome.   01:20:18:06 - 01:20:19:08 Speaker 2 Ends or.   01:20:19:08 - 01:20:57:13 Speaker 1 Marginalized because of something that happened during birth or marginalized because of being neurodiverse or whatever. It's hard and it's relentless and it's exhausting. And the supports that we have are so hard to access between lack of funding and lack of staff and shortages and all of the things. So when I say you're not alone and I'm just talking into a microphone here, I.   01:20:57:13 - 01:20:58:14 Speaker 2 Just hope.   01:20:58:14 - 01:21:11:23 Speaker 1 That other parents, other caregivers out there hear this and know that we're here doing this together, doing this hard work, but we're not.   01:21:11:23 - 01:21:14:01 Speaker 2 Alone.   01:21:14:03 - 01:21:19:06 Speaker 1 We're all in our little bubbles, I guess.   01:21:19:08 - 01:21:23:08 Speaker 2 But we're not alone.   01:21:23:10 - 01:21:52:17 Speaker 1 Whenever I drive in my car to and from my son's appointments, because we have to go so far to see so many of these specialists. And it's always been a lot. Because even if you're not far from a specialist and you live in a bigger city, you're dealing with rush hour traffic. I mean, it's a lot of time taken to go to see doctors and therapists and whomever.   01:21:52:19 - 01:21:58:23 Speaker 1 And when I'm driving to and from these places, I think how many other parents are doing.   01:21:58:23 - 01:22:00:01 Speaker 2 This.   01:22:00:03 - 01:22:10:15 Speaker 1 With their children and probably just so tired and so tapped out.   01:22:10:17 - 01:22:51:04 Speaker 2 And feeling so alone. And I'm crying because that loneliness is more than just being in the car alone. I mean, you have your child there, so it's not really alone. I love my son. It's like I love hanging out with him. I wish that we weren't driving to a doctor. I wish that we were driving somewhere fun or all that time and money and energy was spent on a fun vacation or going to the movies.   01:22:51:06 - 01:23:09:09 Speaker 2 But that's the thing. We're not alone. We're not the only parents out there giving all we got just to, like, keep that ball moving right? And there are other parents who can't find a night nurse. It's unfortunate, but we're not alone. We're in this together.   01:23:09:11 - 01:23:13:06 Speaker 1 And I hope that through talking about this.   01:23:13:06 - 01:23:24:00 Speaker 2 On a podcast and if I'm ever not driving all the time writing about it, that we can connect people. I mean, that's part of what my work is, is connecting.   01:23:24:00 - 01:23:52:00 Speaker 1 Families so they don't feel alone. This isolation and this loneliness, we feel it's so complex and there's so many nuance as to it. There are things that are hard to even talk about, like the fact that a lot of us face potentially outliving our child and that weird thing where.   01:23:52:02 - 01:23:55:10 Speaker 2 You don't want this child to be.   01:23:55:10 - 01:23:56:20 Speaker 1 Alone in the world without.   01:23:56:20 - 01:23:57:24 Speaker 2 You because.   01:23:57:24 - 01:24:03:04 Speaker 1 You know how brutal it is when you have a disability.   01:24:03:06 - 01:24:06:08 Speaker 2 And so you're willing to sacrifice.   01:24:06:10 - 01:24:07:11 Speaker 1 Enduring.   01:24:07:11 - 01:24:17:14 Speaker 2 The pain of having to say goodbye to your child. So they're never alone. And if we have other children.   01:24:17:16 - 01:24:19:00 Speaker 1 We're making sure that we.   01:24:19:00 - 01:24:23:03 Speaker 2 Set them up so.   01:24:23:05 - 01:24:34:02 Speaker 1 They are not the person who's responsible for their sibling if something happens to you. But at the same time.   01:24:34:04 - 01:24:34:19 Speaker 2 You hope.   01:24:34:19 - 01:24:43:10 Speaker 1 That they'll want to be there, but then you hope that they don't have to be there. It's these weird mixes of emotion.   01:24:43:10 - 01:24:44:06 Speaker 2 That.   01:24:44:08 - 01:24:57:06 Speaker 1 You can't explain. And so when I see my friends who are in similar situations, I swear there's just this look in our eyes.   01:24:57:08 - 01:25:05:13 Speaker 2 I can see into their soul and understand.   01:25:05:15 - 01:25:24:15 Speaker 1 When I see other parents who have kids with disabilities, I just feel connected to them because there is this heaviness that we carry that you cannot understand unless you're in it as well. It's this extreme.   01:25:24:15 - 01:25:28:17 Speaker 2 Joy and pride that we have.   01:25:28:19 - 01:25:41:11 Speaker 1 For our children, but it's also this burden not of our children.   01:25:41:13 - 01:25:41:22 Speaker 2 But of.   01:25:42:01 - 01:25:47:11 Speaker 1 All the other stuff that is just not.   01:25:47:13 - 01:25:48:09 Speaker 2 Inclusive.   01:25:48:09 - 01:25:48:15 Speaker 1 Or.   01:25:48:15 - 01:25:50:14 Speaker 2 Equitable.   01:25:50:16 - 01:25:58:00 Speaker 1 Or any of the things it needs to be or that it intends to be.   01:25:58:02 - 01:26:59:14 Speaker 1 There are all these systems set up to support our kids, but the implementation of them isn't there yet, not in community based living, not in our schools. And when you try to just do something like everybody else, sometimes it feels impossible and it shouldn't. And these hurdles exist practically everywhere we turn. And so not only are we tired and exhausted from the day to day caregiving aspect of this, which is completely different from parenting, but we're exhausted from just the lack of accessibility, even when things are quote unquote accessible.   01:26:59:16 - 01:27:17:07 Speaker 1 Because unless there's a change in our thinking as a society or our behaviors or our mindsets, it it's going to remain inaccessible. I mean, I know parents.   01:27:17:07 - 01:27:19:14 Speaker 2 That have not had a proper night's.   01:27:19:14 - 01:27:25:18 Speaker 1 Sleep in years.   01:27:25:20 - 01:28:01:24 Speaker 1 This is some heavy stuff that I'm laying out here, and I get that. But I'm doing this for a reason. It's not that there is not joy. I love my son. I love my children. I love my life. But sometimes sugarcoating it does a disservice to what is really happening. And I cannot say enough that it is never about him.   01:28:02:01 - 01:28:20:23 Speaker 1 My sadness, my frustration and my anger. It's never about my son. It's never about anything but what we're up against because.   01:28:20:23 - 01:28:21:12 Speaker 2 People.   01:28:21:12 - 01:28:58:24 Speaker 1 Don't understand. And that's why I want to be real right now, especially in this age of social media and smiling pictures and reels that are all laughing and funny and hilarious. There is a heaviness there in a lot of our lives, and I want people to know that they're not alone in that heaviness that despite the pictures they see, I would bet that so many other people are feeling it, too.   01:28:59:01 - 01:29:40:12 Speaker 1 And I hope that we can start talking about it more and being open about it. There's always this effort to switch and make things positive and share the good as well, and that's really important. And that's why I cannot stress enough how amazing and beautiful parenting is. But as caregivers for people who truly do have to do caregiving in addition to parenting or grandparenting or whatever aspect of this you're in, caregiving is hard.   01:29:40:14 - 01:30:01:21 Speaker 1 We're taught to sandwich things with sort of good, tough stuff. Good and I don't want to do that today. I don't want to twist this and make some funny story or tell anyone it's all going to be okay because you know what?   01:30:01:23 - 01:30:18:12 Speaker 2 Sometimes it's not okay. Sometimes things don't work out. But that's why hope and perseverance are so important, because that combination can.   01:30:18:12 - 01:30:38:08 Speaker 1 Get us through the day, the week, the years. And I hope that by being open about how hard things are and letting people know that despite how things might seem on the exterior, a lot of us are.   01:30:38:08 - 01:30:40:11 Speaker 2 Struggling and that.   01:30:40:11 - 01:31:32:08 Speaker 1 This journey is hard and that even people who seem to understand it and know it and navigate it well, that doesn't mean that they have all the answers or that they're okay just means they're getting through the day. So if that's where you're at right now, know that there are other people struggling right along with you. And for all of us, just kindness, patience, understanding, offering a smile or help instead of passing judgment can make these hard days a little easier.   01:31:32:10 - 01:31:53:21 Speaker 1 Thanks for listening. Please rate review, share and subscribe and let me know what you want to learn more about. There's no shortage of issues to cover, but I'll gladly move a hot topic to the top of the list. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

You are what you eat. That adage has been around forever for a reason.  The foods we consume have changed drastically over the last few decades. Packaged, highly processed foods have flooded groceries, gas stations, schools, sporting events, and gatherings. It's practically impossible for a child or adult to go a day without having ultra-processed fare offered or simply sitting out to grab.  We're still learning the full impact this has on our minds and bodies. So far the data and anecdotal evidence show it's not good. And to be clear, this has nothing to do with weight or appearance. We're talking overall health, growth, behavior, and how we feel.  Shunta Summers sees this every day. She is the owner and president of Foundations Learning Academy. She's dedicated her life's work to childhood education and nutrition because she understands how it impacts the lives and futures of young people. The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    TRANSCRIPT: 01:00:07:20 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I join the club, so to speak, in 2010, when my first child was born with Down's Syndrome. I left my career as a television journalist to immerse myself in parenting and understanding all things disability.   01:00:36:09 - 01:01:03:01 Erin Croyle This eventually led to my work at the Center for Family Involvement at VCU's Partnership for People with Disabilities as a communications specialist. The impact our diets have on our brains and bodies has always interested me. Becoming a parent of three very different children and learning what families and schools are dealing with when it comes to nutrition made me realize how complicated feeding children can be.   01:01:03:03 - 01:01:21:01 Erin Croyle Shunta Summers is going to break this down with me today. She's the owner and president of Foundations Learning Academy in Richmond, Virginia. Her child care center has a focus on early childhood education and nutrition.   01:01:21:03 - 01:01:44:22 Erin Croyle Shunta, thank you so much for joining me. You have such an interesting background. Born in Queens, graduate from high school in Chesterfield, majored in food science at North Carolina State University. You own and run a successful business. You do volunteer and advocacy work. You're a mother of four. I don't know how you do it all. Maybe we should start with a what I eat in a day quiz.   01:01:44:22 - 01:01:49:00 Erin Croyle Right to figure it out. Seriously, though, how do you do it all?   01:01:49:02 - 01:02:16:08 Shunta Summers Well, thank you so much, Erin, for having me today. I like all of you. We're in this together. We're growing and learning as we live. One of the things that I do is I try to plan as much as possible, but life happens, throws us curveballs. We can't always do what we planned to do in the day. So that's one of the reasons why one of the key things is prepping.   01:02:16:10 - 01:02:37:16 Shunta Summers I'm a big advocate for prepping at the center as well as at my home, because a lot of times I have to spend more time at the center. There are times that I don't get to provide the home cooked meals that I want to at home. So my alternative is to have meals prepped for my children so that they can grab and go.   01:02:37:17 - 01:03:00:15 Shunta Summers It makes a lot easier that they're getting older, but I still want to make sure that they're given the best choices as possible, knowing that there's so many alternatives at their fingertips that they could just order food to come to their homes whenever. So I do understand the importance of having food too readily available at home as well as at the center.   01:03:00:15 - 01:03:05:05 Shunta Summers And that's one of the things we try to educate our families about as well.   01:03:05:07 - 01:03:23:03 Erin Croyle And we're going to get into what you suggested prep later on. I'm writing it down on my notes to make sure we follow up with that question. But I want to give you a little bit more background to who you are. I'm really interested in what got you interested in food science and the connection to early childhood.   01:03:23:05 - 01:03:47:15 Shunta Summers One of the things was I was actually pre-med in school and then I did well, biochemistry, organic chemistry, loved it. But then once I had to start getting into working with humans and blood, I just didn't enjoy it. But then I also was fascinated me was how much food really does affect our bodies on a daily basis. So that's one of the reasons why I went into food science.   01:03:47:17 - 01:04:25:15 Shunta Summers And I absolutely loved it because what I learned at school, a lot of times people say, what you learn school you don't really use in the real world. But those basic concepts that I learned early on still provides the framework for what I do now, even with early childhood development, because I take it our holistic approach. We don't just look at the educational needs, we look at social, emotional, plus the nutritional needs of these children, because we're actually helping families too, because a lot of our families, they don't know how to properly feed their children.   01:04:25:15 - 01:04:53:17 Shunta Summers There's a lot of processed food, so introducing the child as early as possible to healthy, nutritious meals, you can really help their tastebuds very early on so that they don't want and need and crave the highly processed, salty, sugary, sweet foods that don't have high nutritional value that's going to last and help them grow and develop either.   01:04:53:19 - 01:05:25:05 Erin Croyle I am so glad that you brought that up because something that so many parents struggle with is how hard it is to feed our kiddos. Right? And by right I don't mean right versus wrong or good food versus bad food. This conversation is not going to be about more diet culture nonsense. It's about nourishment. And in my experience as a parent, as someone who is involved in schools and someone who's at sporting events, when I say it's hard to feed our children, right, I mean that they are inundated with heavily in ultra processed foods.   01:05:25:11 - 01:05:45:10 Erin Croyle Everywhere they go. There is these things called Scooby Snacks that are like on the label. They say they're good for kids and multigrain. But if you look at the actual packaging, I mean, it's all refined ingredients. Yes. Sugar. So much of the convenient stuff for toddlers and children and adults, for that matter. It's engineered for all of us to want more, right?   01:05:45:11 - 01:05:55:15 Erin Croyle Yes. And then you couple that with food aversions and all these other things, it's really hard to establish and maintain a palate for foods. So tell me more about your experience with this.   01:05:55:17 - 01:06:25:23 Shunta Summers So it is very challenging just from even the childcare perspective is because you want to do especially post-COVID, you want to have as many individually wrapped items as possible, but then that also means highly processed foods that are the lower nutritional value. So just last week I was at a food show. They know that we're vegetarian, So one of the things that they had was Kellogg's.   01:06:26:00 - 01:07:01:00 Shunta Summers They came in, we went to to them and I saw the stuff. But then I also know there's another smaller company that has a whole grain that uses oats versus the refined and the enriched flour. Those type of things where you have to be aware of. Yes, the packaging is not as pretty, but at the end of the day, when I can serve crisp rice over wheat cracker, that goes a lot longer, especially when I have so many children with allergies.   01:07:01:02 - 01:07:25:09 Shunta Summers So that's one of the things is just looking at it like with meal prepping, just like as far as our yogurt, we would just get the tubs of the nonfat yogurt and we would make our own parfaits. But that's a part of prepping. And then at home, that's what I would do too. So we would have the oats or a granola and then we'd have the yogurt and then we'd have the fresh fruit.   01:07:25:11 - 01:07:52:18 Shunta Summers So that's one of the things that we do with the children. We give them the exercise of putting their parfaits together. But on the go, you would have that ready to go. It is very challenging because it takes more time to cut up fruits and vegetables. It takes more time to look at all of the ingredients that goes into a product versus just looking at the big names that's on the front of the product.   01:07:52:21 - 01:07:55:11 Shunta Summers It is very, very challenging.   01:07:55:13 - 01:08:16:09 Erin Croyle Let's talk more about those challenges. Like you mentioned with yogurt. I know I ran into this when my kids were younger, where I would try to give them all that plain yogurt and then just put some fruit in it and maybe a little honey. And then they went out and were introduced to all the other stuff, and they don't like that anymore.   01:08:16:11 - 01:08:28:01 Erin Croyle So what are some ways that we can prep and help keep our our children's palates kind of geared towards less processed stuff?   01:08:28:03 - 01:08:54:01 Shunta Summers It's either be honest with you, it's so much easier birth to five and then once they get into school, you can't help. They're introduced with so many different things, like you said, with the yogurt, because the schools are going to do the prepackaged yogurts. And even when you pack your child's lunch, after a while, they're going to want some of the things that they see other kids have and they'll, Why do you have this?   01:08:54:01 - 01:09:26:01 Shunta Summers Why do you have that? So it's more so of just honestly educating them early on with the nutritional value of the the foods that they're putting in their body, what it what it does like with my pre-teens, I have a daughter she goes she likes going to altar. But one of the things I say is instead of having to do all the acne and all of those things, if you put good things in, you don't have to worry about all of these bad things coming out.   01:09:26:03 - 01:09:50:18 Shunta Summers So one of the things that I like, if you do drink a juice, make sure you followed up with that same amount of water. Little things you just instill in them. Yes. They may not always get it initially, but in the back of their mind they'll they'll go back to it. I had a parent tell me that she did all the right things and then their teenager exposed to very various different things.   01:09:50:18 - 01:10:13:08 Shunta Summers And then, you know, they followed what everyone else did. And then later on, 1819, that's when they realized, hey, what mom was was doing actually made me feel better. And it was a lot easier to do. So all we can do is we can educate, train them, show them the good, the bad and the ugly. But be realistic about it.   01:10:13:08 - 01:10:33:21 Shunta Summers Not just saying that, don't do this. We explain what what goes into them depending on their age so that they really do understand and so they can make that decision for themselves. I think that that makes it a lot better for them. And if they have more buy in, like I have a teenage son in high school.   01:10:34:01 - 01:10:58:21 Shunta Summers So he was like, Well, I want to make sure my chicken breasts. So I said, Well, here is the non salt seasoning. So he was like, okay. And then I can add something else. Yes. So you're not adding salted seasoning plus any condiments or anything that has that. So you compromise. And so as long as they can understand that, of course you can explain that to our five or seven year old.   01:10:58:23 - 01:11:08:17 Shunta Summers But the older the child is, you you try to prepare them for life. And so you you do it in phases and stages as they're developmentally ready.   01:11:08:19 - 01:11:28:12 Erin Croyle I really love that you mentioned that. And I'm going to share my own story because I have three kids and my oldest, as I mentioned, has Down syndrome. Early on, he needed to gain weight. We're like working with the doctors to make sure he got all the food he needed. It was my first kid, so I had time.   01:11:28:12 - 01:11:49:23 Erin Croyle It was extra egg yolks in the scrambled eggs, heavy whipping cream in the scrambled eggs. I would always add baby spinach to those eggs because you can't taste it. You may see green flecks. It's nothing. A little turmeric in there, extra olive oil here and there, avocados. But it was so interesting to me because my mother in law, for instance, was like, well, he has to gain weight.   01:11:49:23 - 01:12:19:22 Erin Croyle Why aren't you giving him ice cream? And I'm like, because he's like, not even one yet. And I don't want him to want cake and cookie and ice cream. I want him to want the things that are good for his body, that are good for his brain. And I so often see that with kids. So especially when you're thinking intellectual disabilities, developmental disabilities, if you can help them, just give them all the good stuff early and I really kept the processed stuff out of his food.   01:12:19:22 - 01:12:42:16 Erin Croyle Aversions came his favorite foods. Because of everything, I pushed our hummus and the only produce he'll eat is clementines. But I'll take it and I can make smoothies and mix in a bunch of vegetables. Right? I was able to build a really good foundation, and now I'm trying to introduce more foods back in, and I can get into that later with ideas for others who are struggling with that.   01:12:42:18 - 01:13:01:06 Erin Croyle But I just feel like it's so important. But yet we see everyone around us trying to push the and again, I don't want to do diet culture, but some of it is just junk food in it and he didn't like lollipops and candies. He only liked chocolate. And so I was riding that wave as long as I could.   01:13:01:06 - 01:13:07:21 Erin Croyle And it was interesting to me to see how many people tried to push like, you know, the gummy fruits.   01:13:07:23 - 01:13:09:21 Shunta Summers gosh, yes. But why do.   01:13:09:21 - 01:13:11:20 Erin Croyle People give kids gummy fruits?   01:13:11:22 - 01:13:40:22 Shunta Summers I have no idea. No idea. I see. And that's one of the things like something like the gummies. My daughter has severe food allergies, so I had to dig into what makes those gummies. Even the gummy vitamins that they push, it has carnauba wax in it and that is a derivative of a tree nut. So that's one of the reasons why I don't do the gummies.   01:13:40:24 - 01:14:02:13 Shunta Summers When she was younger and I had more control, that was easier for me. But now that she's older, I want her to understand what that does to her. So when she starts breaking out, when she does not feel so good, it's because of that. So she's making that choice. Even though I see everyone eating those, I don't want to because of the way it makes me feel.   01:14:02:15 - 01:14:27:06 Shunta Summers So even with children that as they get older, they start having the food aversions, the core and the foundation that you laid. It is inherently in them and eventually it'll come out. But the one thing is to give them that time and space to try new things. But yes, Clementine's I'm all for it, you know, let's go with that.   01:14:27:06 - 01:14:56:10 Shunta Summers And like you said, the smoothies, you're doing that. But it is very, very hard nowadays when even I mean, love it grandparents or other family members that don't share your same philosophy when they come in and they're like, I want to give them a treat. Okay, let's bake together, not let's take them out for ice cream and all these other things that just is not good for them.   01:14:56:12 - 01:15:21:22 Shunta Summers That's one of the things that I tried to do, even in my own family, is just educate them on the importance of eating more wholesome foods because you you actually feel better and it stays on you a lot longer than those highly processed food where you had those sugar spikes and then you had those crashes and you just do not feel well at all.   01:15:21:24 - 01:15:46:09 Erin Croyle You see so many different kids and you have been doing this for over 20 years with your foundations Learning Academy, seeing different generations. I find it interesting how little we know about nutrition. I see it with my husband who thinks certain things are healthy and I'm like, no, no, no. They need some protein for breakfast or else they're going to be hungry in an hour sort of thing, right?   01:15:46:11 - 01:16:00:10 Erin Croyle How do we help with the mindset of parents and family members to understand and children? What we put in our bodies really impacts how we feel throughout the day.   01:16:00:12 - 01:16:26:14 Shunta Summers That is that the challenge that I have right now. Just last week we had a child just he comes in at 630 in the morning and he is very amped up, not even in kindergarten. And mom brings him in bags of chips. But I was like, Hey, what did you drink this morning? I had some soda and he had candy on the way there just to get him in there.   01:16:26:14 - 01:16:48:17 Shunta Summers But mind you, the child had been coming here for years, and I could tell that he just could not sit still. He couldn't do this at any other. And I had to call mom. I said, Mom, I know I maybe crossed a line, but can you help us out? We give him wholesome breakfast. Just please, if you can refrain from doing that.   01:16:48:17 - 01:17:17:20 Shunta Summers So that be the first thing that's on his stomach in the morning that can help us and also help him once he goes to school throughout the day because he has numerous behavior issues. But it's because he is like amped up on sugar constantly. That's where it's very challenging. I try to do workshops. Not as many parents participate, but I want to get back into doing our little daily tidbit of information that we send to parents.   01:17:17:22 - 01:17:41:11 Shunta Summers Some small thing that they can read not throw in statistics and everything at home. Just say, Hey, let's start the morning out with this. Let's try this, let's try that. Parents are a lot of times they're in a lot. There's rushing and it's just a lot, especially with the social emotional aspect that families are dealing with post COVID that goes hand in hand with nutrition.   01:17:41:13 - 01:18:14:13 Shunta Summers So many people have had to move. Family life has changed on a permanent basis. Sometimes you have families that have had to move in with grandparents and everything. So that dynamic changes to when you tell a parent, hey, meal prep, they may not have the space or the capacity to do it. So you try to take baby steps now when you're trying to food, one of the things we try to do is we'll take pictures of the child so we can share that with the parent so that they have more buy in because they see it's their child that's eating that food.   01:18:14:19 - 01:18:29:19 Shunta Summers And then we'll send home a recipe so that they could possibly try it as well. It is just very challenging. I will say as soon as you think you have it figured out, that's when the child goes and changes and you're like, my gosh.   01:18:29:21 - 01:18:31:08 Erin Croyle Every time, right?   01:18:31:08 - 01:18:33:11 Shunta Summers Yes, yes, yes.   01:18:33:13 - 01:19:03:07 Erin Croyle Yeah. I feel like we're at a really tough point in so many ways. This intersection of post COVID or living with COVID after being isolated, but then also the economy is booming, but people are hurting. We've got inflation. Grocery prices are more expensive than ever. Families are working so hard, kids are exposed to so much lousy food. And on top of that, I love the anti diet movement.   01:19:03:07 - 01:19:19:23 Erin Croyle I love that we're finally fighting against diet culture. But at the same time, I was working with a nutritionist for a while for my own sort of disordered eating, growing up in coming of age in the nineties that focus on being rail thin really does a number on you, right?   01:19:19:24 - 01:19:20:17 Shunta Summers Right.   01:19:20:19 - 01:19:48:00 Erin Croyle So there's a generation of parents trying to undo what was done to them as kids and a lot of that and the nutritionist advice to me was to give my kids access to whatever. And I don't think those nutritionists have kids. When you think about the recommended level of sugar and then what they get just in a school day or anywhere, I am terrified to even do the math of sugar amounts that our kids are exposed to.   01:19:48:02 - 01:20:19:22 Shunta Summers That's right. That's right. That's one of the challenges. I know my daughter, she is very in tune with watching nutrition and she was just like, yeah, things change when Michelle Obama had that initiative in the push for healthier lunches because all of our good juices and all our good stuff is gone now. But it was very good so that they do have better choices in the schools for the children, but it's still not where it could be.   01:20:19:22 - 01:20:52:21 Shunta Summers But I understand that it's high is really tough because of the cost of the foods. I know that the cost of food, it is really, really high. Right. It is very challenging for the prepared foods that the children have available to them in the school system as well as in a lot of childcare centers here. And then just imagine where a parent where you have to grab something and go just because you're constantly doing, doing, doing.   01:20:52:21 - 01:21:20:13 Shunta Summers Like you said, I live it, you know, with the children, they have access to DoorDash, Uber eats all of that. So no matter what I prepare, sometimes they'll order stuff before I get home and I'm like, Guys, I had it already prepared for you. With all the food allergies. That's one of the problems that I have, is that you don't know all the byproducts, everything that goes into making of your food.   01:21:20:13 - 01:21:43:12 Shunta Summers So you have to be very, very careful sometimes when they're there just feeling sluggish. And I said, You didn't put anything good in so you were eating nothing. But fillers is going to come out later on. So that's why you're not feeling so good. So from time to time we'd have to do like almost like a detox. I wouldn't call it that to them with my children.   01:21:43:14 - 01:22:10:03 Shunta Summers That's where it really is challenging. I haven't seen so many children with so many issues with bowel movements and everything, and that's because of the food that they're getting in. They're not getting enough fiber, they're not getting enough of their nutrients and everything in on a daily basis. And parents like old, they don't eat vegetables. Okay. What what what can we do to try that to start that?   01:22:10:03 - 01:22:19:21 Shunta Summers Don't just give them the option of only having the fruit. You have to find something or creative way of preparing it so that it's it's fun for them.   01:22:19:23 - 01:22:23:04 Erin Croyle And how do you do that at your academy? You have ages.   01:22:23:04 - 01:22:46:24 Shunta Summers What Actually, my passion is always with infants. This is the first year that we don't have an And so I start like at 14 months and we technically go up to 12 years old, but we stop at second grade. Those are the ages that we primarily serve. And my focus is really preschool, toddlers and preschool. So one and a half to five years old, those are a majority of our children.   01:22:47:01 - 01:23:00:04 Erin Croyle And you have this amazing program or you're feeding them healthy vegetarian foods. What ways is that food prepared to get them excited about it and trying new things and all of the above.   01:23:00:06 - 01:23:26:16 Shunta Summers We have our food activities that the children participate in. So when we would show them almost like the gummy candies, we would dry it fruit. I had the child friendly knives and all the little things like that. So that was an activity. They would cut up their strawberries, they would cut out the bananas and then we would dry it because they did it.   01:23:26:18 - 01:23:46:11 Shunta Summers They were more apt to try it. And then when they took it home, that was the thing that they talked to their. I made this and try this mommy. And so that had more buy in. One of the things that we're working with, too is Virginia State, their ag department. So we're going to do almost like a smaller urban garden.   01:23:46:16 - 01:24:08:23 Shunta Summers So the children are growing it because that's what we've seen, is they have buy in, they're doing it. They're touching, feeling and smelling it. They're more likely to taste it. That's one of the things that we we're very excited to do. So we have the raised bed gardens and all of that that's going to be popping up for this spring at my mother's center.   01:24:08:23 - 01:24:32:24 Shunta Summers They do that too. So getting children to try tomatoes, gosh, that was like unheard of. But because they saw the evolution of the tomato growing, how they dug the seed in there and they saw it, the vines growing, and then they finally saw this little tomato that grew, allowing them to pick it, that had more body. And so they can at least try to say, hey, I like it, or I don't like it.   01:24:32:24 - 01:24:47:00 Shunta Summers Not just because sometimes the parents would say, Well, either I didn't like it, so I'm not I didn't serve it to my children. That was a way of introducing new foods to the children so that they would be excited about it.   01:24:47:02 - 01:25:05:23 Erin Croyle I love that. I am actually lucky. My 11 year old has always have a picture of me at the farmer's market when he's like nine months old and eating tomatoes with this big smile and his cheeks full. Yes, right. The growing him is so fun. You could grow a tomato plant on your dad. You don't have to have a garden right?   01:25:06:00 - 01:25:24:17 Shunta Summers One of the projects we would do is, okay, you have a balcony because you live in apartment. Okay, put that out there. Or let's say you don't even have a balcony. We can put it on the windowsill and let's see it grow. The children really love that. And so that take home was that it got them talking about it, got the parents involved with it.   01:25:24:17 - 01:25:45:01 Shunta Summers That made it exciting that some of the extra vegetables and a couple of tomatoes we would put out for the parents and they were like, I don't either. I said, Well, your child tried it. And then of course, when the child is ready to go, Mom, can we get one? It's still small steps to help the children and the fence as well.   01:25:45:03 - 01:25:53:05 Erin Croyle Yeah. The thing is, it's you have to walk the walk. You can't just talk the talk. And I think as parents, you set the example.   01:25:53:07 - 01:26:13:15 Shunta Summers That's right. And that's one of the things I tell my staff. I said, we're actually teacher parents to the children. That's one of the ways that we would get through to them was that we would introduce new things and then the children could go and explain this to the parent. And then that would encourage at least hopefully it would encourage some talk.   01:26:13:17 - 01:26:30:22 Shunta Summers Even the vegetarian meals. There's a lot of ways to do it, that child friendly, but it's just depending on the ingredients that you do use that makes it more nutritious. And also so they don't feel like they're eating vegetarian food.   01:26:30:24 - 01:26:57:03 Erin Croyle Yeah. So both as a journalist, I've studied nutrition and big food industries and then having a son with Down's Syndrome and ADHD and now a daughter that has ADHD, I've had to really teach myself, and I'm lucky enough to have a nutritionist at the Down Syndrome clinic in Boston who really gets it, because I think some of the families listening might like to see a nutritionist.   01:26:57:03 - 01:27:20:06 Erin Croyle I know people who have, and some of the ideas are like, make a train out of vegetables, great. But that does not work for my kiddo, for kids who really have a hard time like my son. The other day, someone had a birthday party at school. They serve this Black Forest cake and my son loves chocolate, but it had two raspberries on it so he wouldn't touch it because there were raspberries on it.   01:27:20:06 - 01:27:49:00 Erin Croyle Some aversions are really that big. Know what the nutritionist has pushed is that you have a plate of the things that the child will eat that are healthy and the favorites. But then you have just a tiny, tiny bit of that new food. And that tiny bit of new food is something that is also familiar to them. So I've actually tried since my son will only eat clementines, I put a little piece of an actual big orange, a regular orange.   01:27:49:02 - 01:28:10:03 Erin Croyle I haven't really gotten anywhere with him yet, but he won't push the plate away. He just won't eat that piece. It really is a lot of patience and understanding and consistency. Yeah, I think to try to get our kiddos to really expand their palate and their mindset for food. Right? And it is work for parents.   01:28:10:05 - 01:28:38:00 Shunta Summers It's very challenging because when we have younger children that come in that that are undiagnosed, but we can tell there's a lot of times I'm asking, what does your child normally eat? Especially when they don't eat very well at the center and we can't let them go hungry. So we encourage that parents, tell us what your child normally eats and then you see, okay, a lot of French fries, tater tots, those type of things.   01:28:38:00 - 01:29:03:24 Shunta Summers I said, okay, those are highly precious, but it's also textures. So how can we introduce that and how can we incorporate understanding that we may set that plate in front of the child? We may have to have some alternative to back up because he still needs to have some type of nutritional value so that they can go throughout the day, but at least introduce them to something that they can at least see.   01:29:04:01 - 01:29:36:06 Shunta Summers They may not touch it the first few times, but the repetition of it, you're right, it takes a lot of patience because that takes time for us to to be able to do that. And when you're talking about on a larger scale of having those children that have those foods and not only that they haven't been exposed to or introduced to those children that just don't like those textures, some children only want the softer foods or semi hard foods.   01:29:36:09 - 01:29:55:08 Shunta Summers They won't touch anything that's too hard. So how do you compromise? You have to have some type of backup. So that's one of the reasons why it is a passion. But you have to work with the parents as well as you can say, Hey, your child tried this today. Can you try that with us or even give them a small amount?   01:29:55:08 - 01:30:15:14 Shunta Summers This is what we did, because I've had parents ask us before, how do you prepare it? Because I can't get my child to eat this, that or the other. That's one of the things. And then having very thoughtful staff that we're going to have old school journaling so we can see if there's a pattern. So let's say they're not going to a feeding clinic yet.   01:30:15:19 - 01:30:44:17 Shunta Summers We kind of need to see that pattern of what that child likes and what that child doesn't like so we can slowly start to introduce some new foods. So let's say it's a whole wheat roll. If it's hard, the child won't eat it. We have to soften it. You got to maybe sometimes cut it, cut into force. You have to try various different things just so that they could try to eat that new food that you're trying to introduce to them.   01:30:44:17 - 01:31:08:01 Shunta Summers It is very, very challenging. Like with the cauliflower we had a whole what was the week of the cauliflower. So we did various different ways. I didn't let them shredded because I can find the child friendly shredders, but I showed them the shredding process and then some of them said, it looks like rice. I said, Yes, You get them thinking it's a learning experience.   01:31:08:01 - 01:31:31:05 Shunta Summers It really, really is. It's a learning experience. So it does make it a lot harder because when you have a child with disabilities, you tend to want to stay in that safe space because you were like, I got to get this amount of nutrition in them and I know the foods that they'll eat. I've had parents that I had a child that had significant developmental delays and he was at a feeding clinic.   01:31:31:05 - 01:31:54:20 Shunta Summers And then once he got off of the feeding tube and he was starting to telephone, it was a lot of processed foods. My time. He was in elementary school. That's all he asked for. I want my lunchbox. I said, listen, let's try this eventually, if we had him over the summer, that's when we saw the biggest change where he was able to eat our foods.   01:31:54:21 - 01:32:20:14 Shunta Summers It wasn't that he couldn't. He was just so used to having the pizza Lunchables because the mom knew that's one thing I could get in them. He was going to be fed because weight gain was always an issue. I said, Let's try some of the potatoes and we'll add a little root vegetable mixed in there. And a mom's like, I never even thought about that.   01:32:20:14 - 01:32:46:05 Shunta Summers And I said, That will help instead of the lunchable, you know, So trying to educate her as well. I will never, never forget that because a child now, he graduated high school and I see his father and his mom from time to time and so he does remember that we kind of said, we're going to try this because his parents never want him to try anything because that was their only child.   01:32:46:06 - 01:33:06:24 Shunta Summers So they just let him kind of be in the driver's seat. So now that he's in college, he's starting to venture out on some different foods. You know, he's not there yet because he stays at home, but he he just remembers how much we pushed him. We'll try this. I know you like the banana, but he wanted it cut up.   01:33:07:01 - 01:33:29:20 Shunta Summers I said, listen, what about if you hold it, maybe put it on a fork? So it was like, gosh, no, I'm not going to bite it. I said, Just try it. So I do understand even that action of biting it off of the actual whole banana, that was something just mentally he he did not want that. If it was cut up in bite sized pieces where he can grab with his fingers, he was fine.   01:33:29:22 - 01:33:35:08 Shunta Summers So eventually we got him to start to eat the larger pieces. So it's it's very challenging.   01:33:35:14 - 01:33:41:23 Erin Croyle It's complicated. And I think because we all bring our own food issues to the table, so to speak.   01:33:42:00 - 01:33:42:22 Shunta Summers Yes.   01:33:42:24 - 01:34:07:04 Erin Croyle That, you know, we're like either trying to not pass them off or accidentally passing them off. Yeah, yeah. We're talking about it too much and just there's so much pressure on food and there's research that shows that children, because they don't have control of much in their lives, will then create a fight with food because they can say yes or no to what they're putting in their mouth.   01:34:07:06 - 01:34:09:14 Shunta Summers Yes. Yes.   01:34:09:16 - 01:34:16:18 Erin Croyle So how do we take the fight out of food then, to make it just less of a challenge? Do you have any suggestions for that.   01:34:16:20 - 01:34:40:11 Shunta Summers As a parent, knowing your child? And so you're just going to have to do a little bit of research knowing that, okay, just for like that, that child with the bananas, we're not trying to get him to try Kiwi or the sea thing. no, no, no. That was definitely out the water. But let's start small. Let's try a larger piece of the banana.   01:34:40:11 - 01:35:08:02 Shunta Summers Let's try some things that has the same texture as the banana. Don't try to give them like a mango that textures to smooth to watery. They wouldn't want that. Just trying to do different things so your child can still be within their comfort zone. But try it. Try new things. I would never say mix the foods up, especially with food aversions.   01:35:08:04 - 01:35:38:19 Shunta Summers That's not respecting the child's desire to have control. I just I'm a person too. I don't like my food touching, so I try to respect that with the children. So we'll keep everything separate. Now, if they want to dump it in the plate, fine. But at least you're having that control too. So even something as small as how it's presented, it makes a difference sometimes when you're trying to introduce the food, we have the whole food and we're letting them touch it.   01:35:38:21 - 01:36:25:06 Shunta Summers Like, Well, we tried the Kiwi. They were like, my gosh, it feels so weird. But I said, Look at the inside. It is very different. So it's taking into consideration the small things to do to make a difference. Like the lunchable with the, the child that only eight that texture food. What can I mimic that is like that but it's a little bit more nutritious for that child so that they don't have to get a majority of their nutritional value from like a pediasure or and ensure as they get older, which I understand there's there is that need there but like you said, doing the the whole food trying to do have you whipping   01:36:25:06 - 01:36:30:22 Shunta Summers cream into your eggs and things like that, that does go a long way.   01:36:30:24 - 01:36:54:12 Erin Croyle It's important to to remember with texture, you know, even my neurotypical child, he loves blueberries, he loves tomatoes. But if you taste the blueberries, sometimes they're mushy and I don't want to eat them. And sometimes they're perfectly firm but sour. And I'm like, it took me a while to realize I would get frustrated because I would be excited.   01:36:54:12 - 01:37:19:05 Erin Croyle I'm like, All right, I got your tomatoes and your blueberries. And then he wouldn't touch them. It finally has clicked that it's, these are kind of gross. And so what I do as a parent is if we sometimes get a batch of blueberries that he's just not into, I put them in the freezer and those are saved for either making muffins or smoothies or protein pancake, which we're big on in this house and things like that.   01:37:19:05 - 01:37:20:14 Erin Croyle So I'm not wasting food.   01:37:20:20 - 01:37:21:19 Shunta Summers Easier.   01:37:21:21 - 01:37:34:15 Erin Croyle Because it's expensive or tomatoes. You can roast them and, you know, make something out of them. If you invest in a food and you're frustrated, your kid's not going to eat it. Think about how you can freeze it and do something else with it.   01:37:34:17 - 01:37:56:03 Shunta Summers Absolutely. That goes a long way. Like you and like you said, with with the fresh fruits, you can't always tell when they're like you said, they're mushy or they're firm, but they're they're just sour. And you don't want to say, okay, I'm a throw it away. You definitely you can freeze it. There is no one way of doing this, honestly.   01:37:56:03 - 01:38:17:14 Shunta Summers It's just trial and error. But you keep plugging along. If they can verbalize to you what they don't like about it, it is. Sometimes it's hard because they're just like, it's just yucky. Unfortunately, sometimes if they're at a certain age or a development that one time that you try it, that can have that setback that we don't want.   01:38:17:20 - 01:38:39:23 Shunta Summers That's one of the things we just have to take them to consideration. Just say, okay, maybe we'll try that at a later time down the road, a couple of months down the road, but just know that it's not a permanent thing. But you have to know that you can't keep pushing, pushing, pushing because all it's going to do, like you said, that the child has that control when they feel like they have the power to say, no, I don't want it.   01:38:40:00 - 01:38:52:18 Shunta Summers You do have to make sure that they have buy in too, so that they feel empowered. That's the main thing, is letting them feel empowered. But you don't want to cater to the wrong habits, if that makes sense.   01:38:52:20 - 01:39:13:08 Erin Croyle it makes total sense. And it can be very hard, especially when you have outside influences and grandparents and family members who are pitching in and just allowing a free for all with certain things. It's really hard to undo the damage and it really is damage because it really can change your palette and the way that you taste things.   01:39:13:08 - 01:39:29:08 Erin Croyle And yes, I notice myself, if I have been eating ice cream and my God, I love a good brownie, right? And then I go to have blueberries. They don't taste as good. But if I say, okay, guys, you know what? We've been eating so much stuff, let's just kind of do some unprocessed for a week or two.   01:39:29:08 - 01:39:42:12 Erin Croyle And really, those blueberries taste like heaven, like the sweetest I've ever had. You kind of have to give your body and mind a break to have those. Yeah, it's really good.   01:39:42:12 - 01:40:04:19 Shunta Summers Again, that's what I was saying when I when I had to kind of detox when we're just doing all the bad things and I'm starting to see that, that, that they are wanting all of those foods. That's what I said. Okay, let's take that break and just do the process for all just a little while. I say it has to be permanent, but it's important to get back to our basics and what we know.   01:40:04:21 - 01:40:08:12 Shunta Summers Yeah. So yeah, I totally agree with that. And I've done that myself.   01:40:08:12 - 01:40:48:01 Erin Croyle So yeah, one, it's important to remember too that there are foods literally designed and tested to make us want to eat more, to have a specific mouthfeel specific. In fact, I think it's Doritos and like certain chips, right? These food science tests are looking at the mouthfeel. They literally are making sure it's not too spicy, just kind of bland enough to make you want to eat a lot of it as opposed to when you eat a really good rich dessert and you're like, gosh, I'm done, because that's just a really good dessert and you're done.   01:40:48:01 - 01:41:15:22 Erin Croyle But these foods are meant to make you want more and more and more. Yeah, and that's what we're contending with everywhere our kids go. And not only that, but like, our schools don't have a lot of money for food. And these companies literally design food to give to students. So we're talking Kellogg's, General Mills, whoever, very specific cereal bars to get kids to be brand loyal.   01:41:15:24 - 01:41:18:20 Shunta Summers Yes. Want that. That's right.   01:41:18:22 - 01:41:30:14 Erin Croyle How do we contend with that, if that's what they're getting fed? They're literally trying to be programed to want foods. What what are we to do.   01:41:30:16 - 01:42:01:23 Shunta Summers That That's probably the biggest challenge because like even the preschoolers, they know logos, They know brand recognition, even before they can recognize true alphabets and words and everything. They know brand recognition. You ask them McDonald's, Taco Bell, you know, all of these places, they know what those images are, even if they don't know what the words are. And like you said, especially in the schools like you had, there are prepackaged foods that are all wonderful and colorful.   01:42:01:23 - 01:42:23:19 Shunta Summers Like just last week I was at the food show and again, it's nothing wrong with it but to to see all the bright colors, the Kellogg's things that they were trying to push as healthier alternatives. All of this like Trix yogurt and all that stuff like that, when I know that there's other alternatives. And yes, the packaging is not as good.   01:42:23:19 - 01:42:43:16 Shunta Summers And that's one of the reasons why I go to that type of food, because I don't want the children to I don't I don't want to buy into that brand loyalty. And then also that mindset that if it's not that, then it's not as good. That's one of the problems that we have with the younger generation, not just with food.   01:42:43:18 - 01:43:13:11 Shunta Summers It has to be a certain brand name for it to be good. Not saying that the actual quality is there, but because the marketing was so well done that this is why this is so much better for you than anything else that makes a difference. My family and I, we go to Canada every year and one of the things that I had introduced them a couple of years ago was let's go into a Walmart.   01:43:13:13 - 01:43:52:01 Shunta Summers It is so different. We bought home like Froot Loops, same company. I said, Tell me if you can tell me the biggest difference. the the packaging doesn't look as nice as the American. They don't have blue like we do. And I said, okay, so now that they're old, I said, Turn and look at the ingredients. They use beet juice as their food coloring, whereas we use red dye number five yellow and all that carcinogenic.   01:43:52:03 - 01:44:26:22 Shunta Summers Why are we and it's the same company, same American company, why are we allowing that to happen for us Americans? But we send overseas the better quality So they literally their aisle for cereals is nowhere near the size as our cereal aisle is. And so that's one of the things that we notice when we say there everyone feels better, I say it because I know I'm going off on a tangent, but the government regulates sugar and salt amounts in all the foods that are sold in Canada.   01:44:26:24 - 01:45:10:15 Shunta Summers So what happens is you can't get high fructose corn sirup, you can't get some of the things that we have. So at least if you did have the processed food, it was a little bit better for you. That's not available to us. For example, because I follow the Child Adele food program. I'll serve cereal once every two weeks, and it has to have under a certain gram of sugar and the children like, I don't know this and the other, but they are the brand name cereals that they make with less sugar that I can purchase, but we can't purchase in the grocery stores.   01:45:10:17 - 01:45:49:05 Shunta Summers Why is that? So if something as bad as like, like Cocoa Puffs, something like that, I have the ability to buy it at 40% less sugar than at the grocery store. Why do we even offer that other alternative? So it would help our families that if they had to do processed, at least it was a healthier alternative. At a food show last week, Lady was like she was so happy that the waffle all we do the the food is all natural vegetable food coloring with same thing that they use over in Canada.   01:45:49:07 - 01:46:21:03 Shunta Summers So that's available food service wise, but not to the general public. So I'm just like, my gosh, where are we missing the ball? I mean, food science, it can be done. We're choosing not to do it. So you have to be very careful of what you put in front of your children to eat. And so that's one reason why I do choose not to have the well-known brands of foods.   01:46:21:03 - 01:46:32:23 Shunta Summers Even if we have a snack that is prepackaged, it's going to say a cinnamon granola bite, of course, is going to be less sugar than the post or Kellogg's version of it.   01:46:33:00 - 01:46:57:21 Erin Croyle I very much am right there with you with my frustration on this, because you're right, Canada and Europe have much more stringent controls in Europe. Things like Mountain Dew, which has terrible food dye, terrible amounts of sugar, like certain things, just they are not legal, but yet we sell them here. Yes. I feel like as parents, caregivers were up against it.   01:46:58:01 - 01:47:07:08 Erin Croyle And you mentioned the sugar content in cereal. So Cheerios like one gram of sugar, whereas Honey Nut Cheerios.   01:47:07:10 - 01:47:35:14 Shunta Summers wow. And that's not even we can't serve Honey Nut Cheerios because of the amount of sugar. But I can get it because it's available with the lower sugar content. And I'm like, So if you guys make it, why not just do away with the really bad stuff? That's the thing I don't get. Like I literally can buy not the honey, not too many food allergies, but there's apple cinnamon.   01:47:35:16 - 01:47:53:15 Shunta Summers But if you buy it in the grocery store, it is not credible. But when I buy it from the vendor, it is credible because they make it worth less sugar. I go figure, I don't I don't understand that. That's one of the reasons why we don't do very much of the the cereals. They're up for a little bit.   01:47:53:15 - 01:47:59:22 Shunta Summers And then by 930, 10:00, they're crashing again because they're hungry, because the cereal didn't fill them. Yeah.   01:48:00:03 - 01:48:27:15 Erin Croyle And what's scary to me is that for our children, it's anyone over the age of two is recommended less than six teaspoons a day. That's 25 grams. Okay, So if you think a bowl of Honey Nut Cheerios has 12, you're already halfway there. A 12 ounce can of Coca-Cola has 39 grams of sugar. And let's not forget juice, because if you're drinking juice, you're taking all the fiber out.   01:48:27:18 - 01:48:33:02 Erin Croyle And so it just turns into sugar anyway. I mean, what do you recommend with the whole Juice conundrum?   01:48:33:04 - 01:48:58:22 Shunta Summers Well, one of the things that we do well help to cut up the fruit that they can put into their water. Yes, you can do a 100% juice that doesn't have the added sugar, but it still has sugar in it. But as a parent, you can buy and you're thinking, I go to the store, I get Tropicana, because you're thinking, okay, this is wonderful, but there's very little of the real fruit juice.   01:48:58:22 - 01:49:20:22 Shunta Summers And there is certain things that I really do try to avoid and parents like, well, I don't understand. And once I start explaining that to them how that can have an effect on a child's behavior, sometimes parents are like, my child is hyper. And this. And yet I said, Well, especially at one, two years old, when they're really, really young.   01:49:20:22 - 01:49:47:17 Shunta Summers I said, Well, let us try to look at what their food intake is, because sometimes I'm not saying this all the time, but sometimes we can adjust their behavior with the food that they're eating and drinking because like I said, if they're coming in there with a big cup of juice, it's nothing but sugar. And then you also have the dyes, all the other chemicals in there too, that is just not needed.   01:49:47:19 - 01:50:10:15 Shunta Summers That really does have an effect on them. So a lot of times I tell the parents, let's start with that, because parents like, well, they don't drink milk. So I just gave them juice and I'm just like, my gosh, you know, that's not the same equivalent to say juice is equivalent to any type of milk that's just not.   01:50:10:17 - 01:50:27:00 Erin Croyle Drinks or such a hard one. Shunta What should we be giving our kids to drink? And I think there's a fallacy thinking that cow's milk is the best source of calcium. So when we're thinking about drinks, what's the best thing to drink? And also what's the best source of calcium?   01:50:27:02 - 01:51:03:10 Shunta Summers Honestly, water and I know they get tired of it, but that's one of the reasons why we try different ways to drink it. They'll try, like in the summertime when we cut up, the pineapples put it in there so they could taste it, just have a little infusion of the fruit in there. That's what I encourage is the water and then with the milk, I'm it's kind of hard for me because I have to follow the child and L food program, but I'm not really a big proponent on dairy getting your calcium from even other sources of dairy.   01:51:03:12 - 01:51:21:16 Shunta Summers Like you said, as long as is good quality yogurt, some cheeses, almond milk, you have your soy, your oat milk. I find that those are wonderful sources of the calcium. I really am not a big proponent. One cow's milk, although I have to.   01:51:21:18 - 01:51:47:18 Erin Croyle You mentioned before you see kids with food aversions and kids who aren't yet diagnosed. One thing I don't think we even realize are that some of our children's eating habits can actually be an indicator of potential neurodiversity or developmental disabilities. A good example is my own child. I could just see a lot of gravitating to sugar and just craving that kind of food.   01:51:47:18 - 01:52:11:16 Erin Croyle And as I learned more about my own ADHD diagnosis, I saw that they were looking for dopamine. And sugar is a really great, fast, cheap, easy way to get dopamine. It's not actually great, though, because not good for you, right? What do you see in your experiences of some of those food things and how they relate to potential disabilities?   01:52:11:18 - 01:52:50:09 Shunta Summers So probably one of the easiest things that we can tell is that the child really does not want to eat certain foods a lot of times is the the foods that are too soft for like a toddler or an older child. They don't like the like the applesauce or the really smooth foods that they can't bite into. On the other hand, we've also seen where children don't like the textured foods they like, spongy type soft foods that they can like mash in their mouth without having to chew.   01:52:50:11 - 01:53:23:23 Shunta Summers That's of the indicators to a food that is soft but not too soft. That's an indicator where there really is a true distinction, where the child's like and I don't want that because it's it's a little too crunchy or sometimes it's a little too soft. We definitely would see children that the cracker type foods that were harder to bite into where you had to bite and chew, that was another big indicator because that's a skill to learn how to bite and chew.   01:53:24:00 - 01:53:42:18 Shunta Summers So when they would just mash it up or they would almost stuff food into their mouth, so it would be in pockets in their mouth where they would let their saliva break down the food. So they're actually not chewing, so they're actually holding it in their mouth. You know, sometimes parents would like, they're just holding their food.   01:53:42:20 - 01:54:07:08 Shunta Summers They don't want to chew or they're stubborn. No, sometimes that's an indicator there's something going on. Yes. That they can't chew. Something is not connecting where they need to bite and chew and then swallow. That's one of the big things is textures. One of the things that I would see with the children that had the disabilities was the compacting of the food in their mouth.   01:54:07:10 - 01:54:14:23 Erin Croyle Yeah. When you see like sensory seeking or sensory avoidant behavior, it usually means you should talk to your pediatrician.   01:54:15:00 - 01:54:15:13 Shunta Summers Right?   01:54:15:13 - 01:54:34:13 Erin Croyle And it's something more might be going on. So I think it's important to monitor. You know, another thing that's really common with a lot of kiddos is overeating. And so that might be dopamine seeking behavior. I mean, how do you deal with overeating without giving kiddos complexes about?   01:54:34:15 - 01:54:58:09 Shunta Summers That's also an indicator with us where there's a signal that the child is not getting to say that I'm full now, that that definitely is another indicator. When their child is like especially a younger child, they're just eating, eating, eating. That would be a concern. And it may not always be that the child is overweight because a child and maybe burning calories fast because they're growing.   01:54:58:11 - 01:55:25:18 Shunta Summers So a parent may not always see it as, they're overeating, but when they cannot stop and it's obvious that for this portion size, it should be enough, That could be another indicator to being careful, knowing that the child's age and there's going to be times where they will need extra calories because they're just going through a growth spurt, but just being aware that it may be fine for like a week or two.   01:55:25:18 - 01:55:50:12 Shunta Summers But then once it goes on and on and on, that's when you need to start looking at maybe it's more to it than just the growth spurt. A parent was like, Well, they just can't eating. Then you have to look at what types of foods are you giving them, Because if you're giving them foods that are like empty calories, yes, they're going to be hungry in a short amount of time.   01:55:50:12 - 01:55:59:21 Shunta Summers So are they really over eating or are they trying to compensate for the lack of quality food that they have gotten in?   01:55:59:23 - 01:56:18:20 Erin Croyle Yeah, we both alluded to before some of those foods that they're made for us, even though they're heavy in calories or high in calories, they're made for us to digest and move through quickly to want more. Yeah, it's a matter of keeping in the house. I think what is best for everyone in the House. I think two more things I want to touch on.   01:56:18:20 - 01:56:40:13 Erin Croyle They complement each other. So it's it's one what do you see through your work but also through your studies? How does diet impact how children behave and interact with adults and people around them? What differences do you see when you see a child's diet change significantly for the better or worse?   01:56:40:15 - 01:57:08:17 Shunta Summers So when I see the child's diet change, let's say from a positive, there's times where the child is happier, less agitated, they can focus more so they're not just up jumping around like they can actually enjoy the moment that they're in less sick days. That's a big thing. There's less sick days because their immune system is stronger. They actually sleep better.   01:57:08:19 - 01:57:42:08 Shunta Summers So when I see the diet change for the positive, those are the big things that are just telltale signs. They can interact with people, whether it's other children and other adults to a better extent. When you see the the diet change in a negative way, the first thing there's more agitation. And unfortunately, I think sometimes there's more diagnose or misdiagnosis of a child's adverse behavior when it can be controlled.   01:57:42:08 - 01:58:32:01 Shunta Summers A lot of times with their diet, you have to do as best as you can. You can't help that there are certain things no person is perfect. But like you said, a child, they cannot express to you, to the adult. I feel awful. You know, I don't feel well. So when you asked me how diet does affect is not 100%, but it has a very, very high percentage on the outcomes of if a child does have a disability, how we can better help the child in the positive on that positive path to being a successful adult, to having a happy life, not saying that's the end all, be all the cure, but to eliminate as   01:58:32:01 - 01:59:09:21 Shunta Summers many obstacles and barriers as we can so the child can really learn and thrive, and even the family learn how to engage and support that child along that journey. Because, like you said, is a journey we're all going through is no book on every single child we're learning. So this journey, we try to give the best step forward and the easiest thing we can do is through our diet is not everything, but it definitely does have a route in that child's outcome.   01:59:09:23 - 01:59:37:12 Shunta Summers Is several children that I've seen like that that because they have such a poor diet, they have in their file, they are aggressive, they're hyper. Are they really? Or if we could make them a little more comfortable, like the child has problems with his problems. So then all of a sudden he goes to the bathroom and he can't control it because he has medication that has to go.   01:59:37:16 - 02:00:07:19 Shunta Summers So that's a whole nother bear. Now, what are we doing to his social emotional being, that aspect of his development? So his diet now has poured into not only his behavior, his social, emotional, he can't interact with other children because he he doesn't feel good. He has an accident on himself. He can't recognize that, you know, So it's so many different levels to this that if we just do diet, it can help in so many different ways.   02:00:07:19 - 02:00:28:10 Shunta Summers And I know that that that's not the end all be all because if you have a child that has various degrees on the spectrum, like you said, a child with Down's syndrome, one of my close friends, she has a child with Down's syndrome and my hackles all to her as well as you. It's so many different factors there.   02:00:28:12 - 02:00:52:16 Shunta Summers But the one thing that we can help as much as possible is with the diet. That's a start for anyone to look at, like you said, is an indicator for any type of issue that they may have. But also, if we can see it for the better, it can really change a lot of things. I've seen that I've seen that happen so many times.   02:00:52:18 - 02:01:17:22 Erin Croyle But it's also part of our medical systems where they don't stress to parents diet first, they medicate first. We are missing that connection to helping. And you think about sad when we think about sad, which is what we refer to as the standard American diet. Yes, right. I am anti fast food and it makes me feel awful if I eat fast food.   02:01:17:22 - 02:01:36:18 Erin Croyle So it just doesn't happen. And I don't really let my kids eat it. I think this summer was the first time they ever had Wendy's and it really hurt inside to let them eat that. But at the same time, it's going to be everywhere and it's this tough balance of what do you hold back? And you make them want more because you restrict it and doing the best for them.   02:01:36:18 - 02:01:49:12 Erin Croyle But we think about how food makes us feel. Think about that little growing body if we're not feeding it right and what it can do to their bodies and brains, it must be really hard.   02:01:49:14 - 02:02:28:08 Shunta Summers Where I live, I live in Chesterfield, where my center is in Richmond. I look at it, it's so obvious a kindergartner in my children's school versus a kindergarten in many of the other schools, their average weight and height is significantly different. Diet. The families out here, they had parents like you and me. They knew the effect that proper nutrition can have early on.   02:02:28:10 - 02:03:02:14 Shunta Summers So the children were much healthier, taller. They weighed more. They were just stronger. I see it all the time because I'm just like, wow, the children that are in kindergarten here, they're in Richmond. And I hate to say it for the most part, they're much smaller because they were raised on processed foods from birth up. I don't have statistics on it, but I know if I really pulled it, I just know I've gone through this one elementary school.   02:03:02:16 - 02:03:26:11 Shunta Summers All four of my children, we were there for 11 years. We celebrated the first year. We didn't have to go to that school bus stop for that elementary school. All of the children in general were much, much bigger. I'm not saying smarter, not anything, just in the height and weight themselves from the average child from the city of Richmond that I, I dealt with.   02:03:26:13 - 02:04:00:22 Shunta Summers And I know a lot of it has to do with the diet because the exposure to home cooked meals, preparing foods and just having the the education to know that there is a correlation between diet and brain development. That's one of the things that the people that are listening to your podcast right now, they are so much further ahead than the target that needs to hear this message because they're even listening to it.   02:04:00:24 - 02:04:33:21 Shunta Summers The people that really need to hear this, they're not it. And unfortunately sometimes they're getting it after the fact because we know birth to five and those critical times, those synapses are being built, we're not getting that message to the population that it's really it really does need to get out too early on. And that's something I I'm trying, but I don't know how to bridge that because those are the children that really do need to hear what you're saying about.   02:04:33:21 - 02:04:59:20 Shunta Summers The correlation about not having processed foods all the time. It goes into like not just the food deserts and everything, like in the convenience stores, the juices and I'm sure the juices, all the juices, the has no fruit juice whatsoever. And that's all that the children know. If you try to give them water, they're like, no, that's one of the things that I know.   02:04:59:22 - 02:05:40:14 Shunta Summers For all the things that we try to do as parents, parents that are listening to your podcast, parents that know we're doing the best that we can, so we're trying to educate ourselves so we can then better help our children. But those children that really do need it, that's the only problem that I have right now is because that correlation where they can really change a child's outcome and it's not a true disability and it's because of their diet that they're being labeled and they're having to go through all these aggressive behaviors and all the stuff like that when it really is their diet.   02:05:40:16 - 02:06:24:04 Shunta Summers So the children that have the true disabilities, the parents are educated enough to know that we we can improve certain things with the diet to avoid those things. But in an urban environment, unfortunately, those families just aren't as aware as they need to to be aware of. So what I think what I'm going to do is be able to start introducing my parents to these podcasts that you do create out there because they need to hear it, not just reading an article or a statistic, but to understand the correlation of diet and how it does affect the brain development for child.   02:06:24:06 - 02:06:48:15 Erin Croyle What I'm hearing now, it makes me feel like we can do another podcast, but for today I have one last two part question. Everything you just said to me, I am right there with it. And growing up in rural Ohio, it's similar. In rural areas. There's a lack of food diversity. I didn't know what hummus was until I moved to D.C. I didn't know what pesto was.   02:06:48:15 - 02:07:16:12 Erin Croyle And these are amazing, delicious things that are really tasty and also good for you. There are things that we can and should be doing to diversify our food for our children and for all children. So my two part question would be, one, I kind of jokes about what I eat in a day, but I really would love to hear what are some ways that we can help our kids start the day with easy food and some ideas of prep?   02:07:16:14 - 02:07:35:18 Erin Croyle But also the other part I really want to touch on because like you said, for this particular podcast, it's probably going to be a lot of people like you and me listening and we're talking about parents. But let's be real. This falls on communities, right? And you and I are the people showing up and who have the time to advocate.   02:07:35:19 - 02:08:00:12 Erin Croyle So I think of advocating at schools. I think about what's being sold at these stores. I think about what we're putting in food pantries, what should people be eating during the day, but also as community members who are bringing the things to sports events, who are talking to school boards, who are putting things in food pantries. What can we do on that end as well to improve the lives and minds and bodies of everyone?   02:08:00:14 - 02:08:24:08 Shunta Summers Simple things like the children. Surprisingly, because I don't like giving a lot of carbs early in the morning will do the hard boiled eggs and the children. They actually really like that and it keeps on full for a long time. We'll do the scrambled eggs so that the children have that protein early in the morning so it gets their day going.   02:08:24:08 - 02:08:51:15 Shunta Summers So that's one of the things we give them a whole apple. So at first, some of the teacher, like a two year old, get an apple, let them see it, touch it, and they actually enjoy it. And I was surprised at how many almost down to the core. So that was an experience in itself. So just exposing your children to is as much as you possibly can, knowing that first thing in the morning, focus on the protein, not the carb, that's the key thing.   02:08:51:15 - 02:09:26:04 Shunta Summers So anyway, you can get a whole protein that hasn't been processed is probably the better route than like your cereals, bars or anything like that. That's quick. The whole proteins, I say that has helped us a lot. When I was with the food bank, I will say I loved their dynamic shift that they had gone away from. People traditionally think food banks, they give you all this sugary stuff, highly processed, boxed shelf stable.   02:09:26:06 - 02:10:01:19 Shunta Summers The one I do know that I really can say that I liked what Central Food Bank has done is they have gone away from those canned shelf stable type items to they're working with local farms so they can give the fresh produce to families. All their produce, and then the whole proteins, not just the canned items. I have seen an improvement and even across the board, a lot of food banks nationally, they know that that's one of the things that people have this misnomer that they give a lot of the stuff that no one wants.   02:10:01:21 - 02:10:25:07 Shunta Summers So they really do limit their amount of shelf, stable canned goods. And also they also knew that it was more expensive because they had to pay for shipping and the cost with the weight of canned goods. That's why they started partnering with local farms for their fresh produce and they start to see cost savings for their food transportation throughout the state.   02:10:25:14 - 02:10:40:09 Shunta Summers That's one of the things I can say that I really do like that Central Indiana Foodbank has done with their shift from that traditional food pantry type foods to the higher quality foods that they're giving out to families.   02:10:40:10 - 02:11:05:12 Erin Croyle I love that. And I just want to add some of the things that I notice you. Know, you mentioned the protein in the morning. You don't have to give your kiddos breakfast food. They can have leftover whatever. A lot of countries have soup for breakfast with a nice heavy bone broth. I would love to hear some more vegetarian options as well that are high protein because that's a struggle.   02:11:05:14 - 02:11:35:01 Shunta Summers And it is a struggle for us because our proteins have to come from beans and cheeses. What I try to do is if in the wintertime when we have our soups, it has to be kid friendly. And that's one of the things that we definitely wanted to do. There's the dried chickpeas, and those are something that's a great snack when it has a light seasoning on it and the kids actually like them because they'll just pop them in there, like kick cereal.   02:11:35:01 - 02:11:58:07 Shunta Summers But they're getting the protein, some of the beans and the lentils. They're high quality. Again, how is it made? How is it being prepared and everything, even if you have to start with the canned beans, that's much better than a fast food burger. We all have to start somewhere just knowing that protein lasts. So much longer. That stuff fuel that our bodies needs, whether you're big or small.   02:11:58:09 - 02:12:15:02 Shunta Summers So giving them their protein, like you said, even with your protein pancakes, that's wonderful make it fun for your child. The eggs. Some children don't like the egg yolk. Okay. We'll give them the egg whites. They're still getting that protein. And I think that that's wonderful. Them.   02:12:15:04 - 02:12:34:02 Erin Croyle One thing my child's doctor said to me recently, and I think as parents, we need to remember this. There's this big shift into being kind and gentle, but we still the parents, we still know better. Our kids brains are not developed and are not mature enough to make the right decisions. And you have to do that for them, even if they're it.   02:12:34:02 - 02:12:45:07 Erin Croyle So saying no to food that we know is going to make them feel bad. We have to hold firm candy and soda pop in the morning or in general, like.   02:12:45:08 - 02:13:07:05 Shunta Summers No, it's not needed. No, it is not needed. You are charged as being their parent and not their friend. Yes. You can explain as they get older why you do the things. I think that that that helps to empower them. But at the younger age, you do have to be able to say, no, just don't even have that around.   02:13:07:05 - 02:13:32:10 Shunta Summers Like why is a five year old assigning soda and having a bag of chips and having candy first thing in the morning is acceptable because you want to get him to go out the door. Be okay. How about you? You have that conversation with the child. Why is he not feeling okay? You know, you can't use food as as an alternative, as a trigger.   02:13:32:13 - 02:13:59:05 Shunta Summers I just I yeah, I definitely I do agree that we we do have to be parents. We're learning too. Because what I know for my younger two, I wish I had known for my older two. And the thing is I was really adamant with my firstborn No candy, no sugar. He to this day, he doesn't want the sugary stuff, He doesn't want sodas.   02:13:59:07 - 02:14:41:00 Shunta Summers He eats a generally a healthy. And then my fourth child was just like, okay, so it was I just wish I had that same stamina. But we we're human. So we we do better when we know better. But we also have to know that along this journey, we have to make sure that if we are blessed enough to be parents, take that title and that job seriously enough to know that they are looking to you for guidance not to be their friend because they don't know, they're actually looking to you to say, Hey, this is good and bad luck.   02:14:41:00 - 02:15:00:12 Shunta Summers They don't know there's a cliff down the way. But you as a parent, you can look further and say, okay, let's not help you avoid that clip. That's the same thing with the food. Let's them avoid the cliff and saying no may be the best thing, but also telling them why this just isn't going to make feel good.   02:15:00:18 - 02:15:18:16 Shunta Summers You're going to have to break it down age appropriately. But explaining it, I think, makes a difference. Not saying that you always have to have a conversation all the time. Sometimes just firm what they need, but you cannot always be their friend because then who is leading? Who is?   02:15:18:18 - 02:15:42:11 Erin Croyle And before we wrap, because we're going way along, I want to add one more thing to the conversation about community. I just want to plead to other parents you know, when we have events, let's think about what we bring, because not all of our kids have impulse control and know how to make the right choices. I find myself in a constant struggle because there's Gatorade and bulk bags of those mini chips.   02:15:42:11 - 02:16:01:12 Erin Croyle And my kids, I want to have that. I know that we don't want to have bottled water, but If we're going to bring bottled Gatorade, we're better off bringing bottled water to share. Yeah. So let's start rethinking that. Let's start thinking orange slices or I know a lot of people are allergic to nuts, but nut packs or dried fruit, I don't care.   02:16:01:14 - 02:16:13:18 Erin Croyle But can we help each other, help our children and make better choices in, those big group settings? Because your kid might be fine, but the other kids there, they might actually need. Yeah. Nutrition. Actual nutrition.   02:16:13:20 - 02:16:44:08 Shunta Summers Yes. Yes. And I agree with that. I totally agree with that. And just to juxtapose, we had events that were in the city and those snacks were very different from the snacks of where I lived. We were traditionally we had it was a flavored water they had the the cuties they'd have like the raisin packets, they'd have sun chips, all of that stuff versus out there.   02:16:44:08 - 02:17:11:17 Shunta Summers They had Capri Suns, the Gatorade, they bought the big Frito-Lay packs. And you know, everyone's like, my gosh, this is so wonderful, but which one is actually better? After a sporting event? You need the better choice. So I agree. I totally agree. And we are in this together. And yes, you're not putting blame on anyone. And You're not saying that my way is better or because I know I'm better than you.   02:17:11:18 - 02:17:38:18 Shunta Summers We are a community that takes that village so if I know something, I'm going to try to share it positively with someone else so that maybe they can take that nugget. They may not take it all, but take that one nugget and pass it on. And maybe that will be that positive change that that pivot that they need to even have the awareness to know that diet does affect so much in their child's development and in their lives.   02:17:38:20 - 02:17:39:23 Shunta Summers I appreciate this.   02:17:39:24 - 02:18:04:02 Erin Croyle You, too. I appreciate you. And I cannot wait for our next conversation. And thank you listeners for joining us. Please, like, review and share this podcast of ours and tell us what you want to hear about. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.          

People with intellectual disabilities are sexually assaulted at a rate SEVEN TIMES HIGHER than people without disabilities. And that figure is likely a substantial underestimate, as it doesn't take into account repeated abuse or people living in institutions and group homes.  There are steps we can take to prevent abuse and empower our loved ones to protect themselves and understand the difference between healthy and unhealthy relationships.  We spoke with Molly Dellinger-Wray who leads LEAP - Leadership for Empowerment and Abuse Prevention - at VCU's Partnership for People with Disabilities and LEAP trainer Rose Sutton.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:  As Rose mentioned, caregivers need to take care of themselves, too!!  To register for the upcoming LEAP webinar on March 18th, click here! For more about Healthy Relationships and Abuse Prevention, check out LEAP's website. LEAP is currently funded by the Individual and Family Support Program at Virginia's Department of Behavioral Health and Human Services.  Partners in Policymaking is a leadership development and advocacy education program for people with disabilities and family members. This free program is offered across the country and online in some areas. PIP started in Minnesota in the late 1980s.  The NPR report on abuse can be found here. The latest statistics on abuse are here.  The Adult Down Syndrome Center/Advocate Health Care webpage has many adaptive visual aids to help people with IDD with various things. Including:  Bathing and Showering Sexual Health and Relationships Self Care and Hygiene Social Skills   01:00:07:20 - 01:00:34:11 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. My new path started in 2010, when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities a few years after he was born.   01:00:34:12 - 01:00:47:05 Erin Croyle Using my journalism and television producer background as a communication specialist, I have the privilege of bringing much needed attention to issues facing our community.   01:00:47:07 - 01:01:20:02 Erin Croyle Unfortunately, rampant abuse is one of them. NPR's 2018 report The Sexual Assault Epidemic No one talks About brought this to light. Correspondent Joseph Shapiro's yearlong investigation found that people with intellectual disabilities are sexually assaulted at a rate seven times higher than people without disabilities. And that's likely an underestimate, as the report notes, because government surveys used to compile this data don't include people living in institutions or group homes.   01:01:20:04 - 01:01:51:19 Erin Croyle These statistics are integrating heartbreaking and terrifying, but there are steps we can take to prevent abuse. That's why I asked Molly Dellinger-Wray and Rose Sutton to join me. Molly leads a program at VCU called LEAP, which stands for Leadership for Empowerment and Abuse Prevention. LEAP provides training on healthy relationships and information for preventing abuse to adults and teens with intellectual and developmental disabilities.   01:01:51:21 - 01:02:18:10 Erin Croyle LEAP was founded in 2014 and is currently funded through the Individual and Family Support PrOgram at Virginia's Department of Behavioral Health and Developmental Services. Rose Sutton is a disability advocate, autism specialist, mother and a sleep trainer. Molly and Rose. Thank you for joining me. Molly, let's start with you telling us more about LEAP and your involvement with it.   01:02:18:11 - 01:02:48:20 Molly Dellinger-Wray The Partnership for People with Disabilities has been addressing the problem of abuse and neglect of children with disabilities since, I think, 2015. They used to have a grant, a multi-disciplinary grant about teaching multidisciplinary teams about child abuse. And I got involved with that project and felt like we were providing training for law enforcement for school social workers, for court personnel, and for lots of adults.   01:02:48:20 - 01:03:06:10 Molly Dellinger-Wray But we weren't. No one was actually providing training to the people who really needed it, and that's people with disabilities. And so LEAP is taught by a person with a disability and a coach trainer to teach people with disabilities about healthy relationships in Molly.   01:03:06:12 - 01:03:14:05 Erin Croyle What is your role? So what brought you to the partnership and what got you interested in this sort of work?   01:03:14:07 - 01:03:51:10 Molly Dellinger-Wray My role started in positive behavior support and one of the things that we know on positive behavior support is we're always looking. We're like trying to solve a puzzle of why people may be struggling and exhibiting behaviors that make people around them frustrated and angry. And one of the big reasons for that is past trauma. And when you look at the statistics and the data surrounding the numbers of people who have experienced trauma and abuse, that can often lead to some challenging behaviors.   01:03:51:10 - 01:04:14:14 Molly Dellinger-Wray And so that sort of pulled me down the rabbit hole of thinking, you know, we really want to help people with the quality of life. We need to think about their past trauma. And because my background is in special education, I always think, you know, I would much rather prevent abuse than have to help someone work through it on the other side.   01:04:14:16 - 01:04:38:05 Erin Croyle Rose You and I actually know each other from Partners in Policy making the Virginia Class of 2013, which is a long time ago now for folks not familiar Partners in Policy Making is a leadership development and advocacy education program for people with disabilities and family members. The three programs offered in most states and I can put more information about that and leap in the show notes.   01:04:38:07 - 01:04:44:03 Erin Croyle ROSE Can you tell us a little more about yourself and what led you to become a lead trainer?   01:04:44:05 - 01:05:02:19 Rose Sutton So thank you for having me. For myself, what brought me to leap was after we had good partners in policymaking, I had learned how to advocate since where military family. I wanted to know what the rules and regulations were for the state of Virginia. So I went through that class and that opened doors for me. On being able to speak freely about different things.   01:05:02:21 - 01:05:25:15 Rose Sutton So when I found the AR that they were looking for late trainers, I was really interested in that because of my four children, two of them have autism. And at one point they were moderate to severe. And so I wanted to know for myself as a mother how I can help teach them how to be safe with relationships of all different types.   01:05:25:17 - 01:05:45:04 Rose Sutton And when we think about relationships, a lot of times you hear them think about only like boyfriend or girlfriend, those type of things. But we don't talk about paid staff members or are those type of things. And people with disabilities sometimes do not know that they have the right to say no to something or may not even know how.   01:05:45:06 - 01:06:02:05 Rose Sutton So I think that leap was able to give them practice on what it looks like, as well as being able to practice it while we're doing trainings, And I think that that's been very powerful, not only in my own home with my own children when we first started doing it, but I was able to practice on them to see how it was working.   01:06:02:07 - 01:06:22:22 Rose Sutton But I think that it's just very empowering to be able to catch them before end, to end, to help them really some of that energy and to be able to have a safe space, to be able to practice what it means that to have a relationship is not just if you have a boyfriend or girlfriend. It's all relationships, whether you're friends, whether you're strangers, anybody within your in your space or in your world.   01:06:22:24 - 01:06:43:15 Molly Dellinger-Wray And I just want to ask Rose, when we first got started with the leap and we had like a three day training program to train the trainers where we taught people about the problem of abuse happening and about relationship maps and setting boundaries. What was that like for you as a mom?   01:06:43:17 - 01:07:07:24 Rose Sutton For myself, coming from a family of abuse, also, but from the mother's perspective, having children with disabilities, my children can sometimes be very affectionate and very trusting. We see a lot of different specialists, a lot of different types of people daily, and they needed to know what it look like for when someone's trying to help you or when someone's trying to hurt you.   01:07:08:01 - 01:07:37:10 Rose Sutton And so it was important for me, especially when we started, because VCU and and, and Virginia board with people with disabilities, you guys had a program already set up. So we were learning it, but we also were able to give feedback on what that was like and if there was any types of things that maybe we needed to add or not or take out, which is really beneficial for me as a mom, as we were learning it back then, I was able to practice that on my children and see how it affected them and what they were learning.   01:07:37:10 - 01:07:58:05 Rose Sutton And with them being on different ends of the spectrum, it was really empowering. And so for me it's more of a passion of teaching this course, and that's why I'm still here, to give other people a chance with disabilities of all levels of disabilities permission and what does it look like? And to practice it because we can hear a lot of things, but we don't always know what that means or some of those things.   01:07:58:05 - 01:08:21:13 Rose Sutton We don't know what they mean. So being able to practice what this looks like and what does it feel like inside of our bodies and what that that little niche in your stomach, that's like something's just not right. It gives a name to those things. And I think that people with disabilities really need to understand that. And this training is so great because it's a series of before and each day built on the day prior and then adds on to more.   01:08:21:15 - 01:08:51:23 Rose Sutton And so I really like this program and as a special ed teacher as well, I feel that it uses a lot of our senses. And so the more senses we use when we're learning something, the more that we're going to retain it. And this thing is so repetitive within the training that I think that. But at the time it's so neat to see them a session for which is the final session and to really know what they've learned and what they took from it, and to be able to give that feedback to you all who provide, you know, the training opportunities.   01:08:52:00 - 01:09:08:02 Rose Sutton I think it's great because we're able to still provide feedback on what they're learning or what no longer works. And over the years I think it's just been really great as a parent and as an advocate to be able to share that with with the community. That affects my family directly.   01:09:08:04 - 01:09:35:02 Molly Dellinger-Wray Right. So LEAP is four sessions. Each session is 90 minutes, and each session because it's designed for adults with intellectual disabilities. We know you can't just say something once and people are just going to remember it. And so each session builds upon the previous sessions, so they hear all of the information from session one, they hear in Session two, and then we bring out a little bit of new information and then session three.   01:09:35:06 - 01:09:57:24 Molly Dellinger-Wray We hear about session one, session two, and then a little bit of new information until session for the last session, which just each session brings in a little bit of new information, but reiterates the previous information. And also what Rose alluded to was we we developed this project with funding from the Virginia board for people with disability to whom I'll be forever grateful.   01:09:58:01 - 01:10:16:16 Molly Dellinger-Wray And then we had an opportunity to really do research. And so we really needed to firm up figure out how we're going to measure that. This little leap was actually helping people. We knew people liked it a lot, seemed to have fun. And it is fun. It's really fun to train it and it's fun to participate in, I think.   01:10:16:18 - 01:10:44:01 Molly Dellinger-Wray But what we learned through our research is that people actually learned a lot better able to distinguish what a healthy relationship is versus an unhealthy relationship. And as Rose said, they developed a vocabulary to help them explain why a relationship was unhealthy. People might have known prior to the training that, you know, this doesn't feel right, but they couldn't really put it into words.   01:10:44:03 - 01:11:06:13 Molly Dellinger-Wray And so we discovered a big increase in that. And we also discovered that in a lot of opportunities, it's very easy to blame the victim and that people really kind of were better able to say, you know, this is not their fault that this happened to them. It wasn't because they were bad or they deserved it. Somehow. So that was nice to see that increase in that kind of knowledge.   01:11:06:17 - 01:11:08:05 Molly Dellinger-Wray Also.   01:11:08:07 - 01:11:34:14 Erin Croyle Let's take it back to that point before the training, because a lot of the people listening might not be able to attend to training or might not live in Virginia. I remember distinctly as a parent of a kid that has Down syndrome and very limited, traditional expressive language. It was at the arc and it was a law enforcement official who said Abuse it.   01:11:34:17 - 01:11:58:16 Erin Croyle Think of it as it's not if it's going to happen, it's when it's going to happen. And I found that to be very scary. But also very real. And to me, what makes that such a reality is that we teach kids, especially kids with intellectual and developmental disabilities. It's such compliance to listen and they always have people in their lives showing them what to do.   01:11:58:18 - 01:12:24:13 Erin Croyle They're having people help them change themselves at a later ages. And so there's this level of privacy and intimacy that they have with people that most non-disabled kiddos don't experience, like they're potty trained and they're dressing themselves at a certain point and it's done and the boundaries are there. Whereas people with intellectual and developmental disabilities don't get to experience or learn those boundaries.   01:12:24:15 - 01:12:33:00 Erin Croyle So what are some things parents should know about early stages? What sort of boundaries we should be setting up?   01:12:33:02 - 01:12:56:00 Rose Sutton So for myself, I think that one thing that's very important is two of my kids are neurotypical and then I have two that have autism and different things. And for me it was a big gap. It's very different because when I raised the first two, it was all about culturally, your is here, go give them a hug or so-and-so's here and we bring them in your house.   01:12:56:00 - 01:13:15:12 Rose Sutton We'll give them a hug and say hi. And it was fine. They did it and and on command. And the younger, too, one of my my older autistic son. So he's kid number three. He wasn't feeling that. And at first, as a parent, I think it starts with us to understand that sometimes they don't like the touch. Some kids don't like to be touched.   01:13:15:12 - 01:13:37:12 Rose Sutton Some people, you know, they see someone coming in, especially if you don't see the person very often and you're making them go and hug the person because they're a family member. And a lot of times those are the abusers, right? So the thing is that as a parent, I feel that one thing that we could do is to for the parent to become educated so that we can educate our children.   01:13:37:14 - 01:13:57:06 Rose Sutton And what I mean by that is give them some space, learn about what your child is doing. Learn about that. We need to teach our children how to ask permission and how do we do that? We need to practice it, right? So like Molly mentioned earlier, the repetition of things. This training gives it repetition. And so me as a parent, I change my mindset also with the repetition.   01:13:57:08 - 01:14:15:20 Rose Sutton Okay, let me let me tell them. Let me talk to them what they're doing. Let me ask them if they're ready to put their shoes on. At first that that backfired because my kids have sensory issues and so they were taking all these clothes off. And so I'm trying to put them on and trying to get them to get these things and the stuff comes right off.   01:14:15:22 - 01:14:39:06 Rose Sutton And so I have to learn how to understand what was happening before I could help my children. And I think that now, knowing the information that I have now has helped to be able to understand that kids need to know boundaries, you know, they need to be able to make choices if your child is nonverbal. I think that, you know, with our neurotypical children, we said, okay, what outfit do you want to wear?   01:14:39:06 - 01:14:54:09 Rose Sutton What color do you want to wear? What kind of shoes do you want? You know, are you into something? And I think that taking that interest into our children and giving them permission to say no. Now, of course, as a mom of four, you know, we don't want our kids talking back and we want that respect, you know.   01:14:54:09 - 01:15:18:20 Rose Sutton So I get that. But when it comes to keeping our children safe, I think that they really need to know that there are some things that we have to do, even though we don't like to do them. And there are things that they still will have to do even though they don't want to do it. And then there are some times where you have a boundary that you can have your own safe space, that if the child wants to have some quiet time, that they're able to do that.   01:15:18:22 - 01:15:37:15 Rose Sutton And my son, now that he's he's about to be 21 next month, he still uses, you know, when he comes home on the weekends or something. He always says that this is his safe space, like kids from a safe space. And so as parents, we need to understand that, that we all need somewhere to go to feel safe.   01:15:37:17 - 01:16:03:14 Rose Sutton And within our home, there are spaces that are safe. And so as parents, we need to practice as kids are very young. I mean, from from the moment that they're born is to practice these things over and over again daily. Make it a part of your habit so that children know that they have the right to say no, or that something makes them feel comfortable or that what they may have told you is going to be taken seriously and at least be looked into.   01:16:03:16 - 01:16:26:15 Erin Croyle Rosen I really love that you said that because our kids are just kind of forced to do so much from a young age with early intervention and all of these other things and letting them have that space is so important and letting them know that they can say no and the hugging and saying no to hugs. I just want to reinforce that.   01:16:26:17 - 01:16:30:03 Erin Croyle So thank you, Molly. Please go ahead.   01:16:30:05 - 01:16:54:10 Molly Dellinger-Wray So when we can model, as Rose said, like it's important that our kids, what we teach in LEAP is that you get to decide who touches you. You get to decide who touches you. And we can model that as family members by saying, you know, hey, is it okay if I give you a hug now? And if they say no, as Rose said, like, you got to respect that.   01:16:54:12 - 01:17:15:00 Molly Dellinger-Wray And and and making it fun. You know, if you're bathing a child and saying, like, is it okay if I wash your face? Now, if you ask them to wash their hair, my kids would have always said no. They were super tactile, defensive on their faces and heads, but just honoring that permission and asking and making it fun.   01:17:15:00 - 01:17:31:06 Molly Dellinger-Wray And you can make it fun by showing your child from an early age or from any age that their body is their body and they get to decide who touches them. And as Rose said, you know, go give your grandma a hug and go give your uncle a hug. Or also, when you receive a gift, your child receives a gift.   01:17:31:06 - 01:17:49:13 Molly Dellinger-Wray It doesn't mean that the person who gave them the gift deserves a physical touch. That's not part of giving a gift. That's that's different. Giving a gift certainly requires a thank you, but doesn't require a physical touch or a hug or a kiss. It doesn't.   01:17:49:15 - 01:18:12:18 Rose Sutton Also, what we see in this class, and even with one of my two, is that they just go and they want to hug everybody. They want to touch everybody. They want to give everyone a hug. So whether it's someone in your home or whether it's someone in the community, they just want to give hugs. And when the kids are little, people that are receiving it are like, your kid came up and said hi and whatever.   01:18:12:18 - 01:18:29:00 Rose Sutton Like, okay, But when they get older, especially males, unfortunately, you know, you're getting the hug from somebody out of the blue. And I remember my one of my first sessions with Leap the six foot two or really tall gentleman came and just gave me a hug. And it was like a bulldozer, right? He's like, come in. And he was hugging me.   01:18:29:03 - 01:18:53:08 Rose Sutton He was so excited. And it was like really hit home because we're thinking, okay, you don't know who's receiving that hug or if that person is a caretaker and feels that that might be in an affectionate touch or an inappropriate touch and they maybe take advantage of that, then that's where abuse comes in, is that you have these trusting students or these individuals with disabilities.   01:18:53:10 - 01:19:07:21 Rose Sutton And the problem is that sometimes they don't even know their own boundaries. And and so it's up to the person to be able to to guide them through that and the person being able to say no. And so we have to really watch that. Like we had a training. And what happened was, is that we were talking about permission.   01:19:07:23 - 01:19:27:03 Rose Sutton And what end up happening is, is that we do use words like consent or permission. Some of these words they may not understand. So what we do as trainers is we actually show them what that means. We we talk about what does even deserve even mean? What is that? What are these words that you hear people using? And we teach those things.   01:19:27:03 - 01:19:47:20 Rose Sutton And so last night we ended up having a whole hug session because all the participants wanted to have a hug. So myself, as the person with a disability and my coach trainer, we were able to oblige with that. But we also made them practice this as we were doing it to ask permission and different ways to ask permission.   01:19:47:20 - 01:20:11:02 Rose Sutton We actually had to improv and add that in because everyone wanted to touch and we had to be able to incorporate that into the session and we got a chance to practice it and practice different ways and it became such a fun experience for everyone and it was very important and they're very excited when they know we're coming back and they expect to know when we're coming back.   01:20:11:04 - 01:20:19:21 Rose Sutton And I think that is very important. To practice these things at any age is touch and inappropriate Touch and who can touch Molly?   01:20:19:21 - 01:20:21:13 Erin Croyle Did you want to add more to that?   01:20:21:15 - 01:20:44:08 Molly Dellinger-Wray You know, I love what we teach in Leap as how to say no. Everybody has a different way to say no. I think oftentimes what you read about is people saying that you should shout no and stamp your foot and be really forceful. But the truth is, we all have different ways to say no. And what's important and what we teach in Leap is you got to get out of the situation that makes you uncomfortable.   01:20:44:10 - 01:21:17:02 Molly Dellinger-Wray And you need to find a way that works for you. That's what's most important is stopping the opportunities from happening of things that might make you feel uncomfortable. But I think also when we talk about unhealthy relationships and that's that's what we're talking about, it's not not only sexual assault. There's lots of platonic, unhealthy relationships. And any parent knows that one kid that their kid is friends with, that they wish they weren't friends with because they see a lot of unfortunate power dynamics.   01:21:17:02 - 01:21:42:09 Molly Dellinger-Wray And so one of the things that we talk a lot about is what is a friend? Friend is sort of a term that we use fast and loose right now. Are your Facebook friends, your friends who are your friend and what is being a friend mean? And so we talk about a friend is someone who would never hurt you on purpose and who's going to work to help keep you safe.   01:21:42:11 - 01:22:07:16 Molly Dellinger-Wray That's what a friend is. And if someone hurts you on purpose, even though you might really like them or love them, that's not a healthy relationship that makes you feel uncomfortable. If that person you don't feel safe with that person, even though you might love them, that's an unhealthy relationship. And the way we categorize it is to put things into sort of three buckets and rows.   01:22:07:16 - 01:22:09:10 Molly Dellinger-Wray Do you want to talk about that?   01:22:09:12 - 01:22:17:12 Rose Sutton So we talk about unhealthy, unhealthy and confusing relationships and what that is, and we delve deeply into those and what they look like.   01:22:17:14 - 01:22:43:13 Molly Dellinger-Wray So we give people an opportunity to really look at a relationship and we spend a lot of time saying, we know relationships are not just romantic relationships, but you have a relationship with everyone. How do you feel when you're in this relationship and do you think you feel confused by it? We spend a lot of time talking about that, and I think talking about friends, I've spent a lot of time in special ed classrooms and hear teachers say like, Go sit with your friends over there.   01:22:43:15 - 01:23:07:18 Molly Dellinger-Wray Well, are they your friends because you happened to go to the same school together? Are they is everybody your friend? More people say, you know, a stranger is a friend I haven't met yet. You know, kind of not a stranger is a stranger. They might become a friend. We don't want to close that opportunity off to anyone. But the term friend is something that I think we need to be a little bit careful about.   01:23:07:21 - 01:23:27:13 Molly Dellinger-Wray And it's very difficult for people to separate friends from paid support staff because paid support staff help us with a lot of things and they do a lot of the same things that friends do. You know, they listen to you, they help advocate for you, they help you problem solve. But oftentimes they're not there when it's their day off.   01:23:27:15 - 01:23:53:14 Molly Dellinger-Wray Another thing is that as ran, this really goes back to the sort of the foundation of person centered practices is thinking about the language that we use to describe the people with disabilities in our life, who we love. And that is to start by describing them by things that we like and admire as opposed to their diagnosis or their deficits.   01:23:53:16 - 01:24:15:03 Molly Dellinger-Wray You know, he's non-verbal. He uses a wheelchair, a really saying he has a great sense of humor and he always makes me laugh. And he's really smart and he uses a wheelchair. It just creates a different frame surrounding a person that really presents them in a much more positive light.   01:24:15:05 - 01:24:47:22 Erin Croyle Minus all really interesting because it is so complicated because we're talking about individuals and every individual is so different. So something that resonates with me is that, yes, a lot of times you can look at the data out there and it shows that a lot of adults with disabilities, when they do activities like going to the movies or going to the store, going to a restaurant, it's often with family or paid support staff because friendships are so hard for a lot of kiddos.   01:24:47:22 - 01:25:19:03 Erin Croyle I mean, my son is one of them. It's really difficult. The middle school is really hard. On the flip side, there are other kids with intellectual disabilities I see who are have lots of friends and are very social. It just depends on the individual right. And so where do you find that divide? It's such a fine line trying to help children, adults make friends, but then making sure that those friends are safe friends and then making sure they understand that the paid support staff is not a friend.   01:25:19:05 - 01:25:49:19 Erin Croyle How are you going to navigate that? But also make sure that they are protected? Because when you look at the abuse statistics, it's almost always somebody that the person knows. And unfortunately there are predators that work in group homes and institution INS and even in schools who know, you know, there's grooming that's happening. So how do you help children, adults with disabilities understand that and navigate that effectively?   01:25:49:21 - 01:26:11:07 Rose Sutton So we have what's called a map of your world, and it looks like like a snail shell. So it's like a spiral thing. And we have a star in the middle of it. And in the star we talk about that is the person themselves and that they're the most important person out of all these people. As as we come out of that Star Space, we talk about some friends and families can be close to you.   01:26:11:07 - 01:26:34:20 Rose Sutton We talk about the different people in their world to include people that we no longer want in our world. And if they have a romantic partner. And so what we distinguish a lot of is your right is that because we, our kiddos, don't have a lot of friends sometimes now they turn to social media and they you friended them or you have a lot of gamers that have disabilities and they're able to speak freely or their language really comes out.   01:26:34:20 - 01:26:52:20 Rose Sutton You see a lot of that thing. And so they're like, those are my friends. And so we teach them how to set boundaries with those things and not to use your name with each group of people, we talk about what you tell these people in these different spaces. So if we come out of that little circle, we talk about what do you tell this person?   01:26:52:22 - 01:27:13:16 Rose Sutton How do you trust them? We really break down what trust even means and what that looks like to include that. The length of time that you've known the person, what do you tell this person? We show that by modeling that in the class, because a lot of times what happens? We go to these trainings and they see us come in and they immediately want to touch and hug and, you know my name.   01:27:13:16 - 01:27:35:13 Rose Sutton So now I'm going to go and I'm going to hug you. And we have to show them by modeling that that they need to ask permission. So we always stop them at the beginning. And so when we're talking about leave, we do extensively go into who is the friend. Your parents may be the closest person to you, you may tell them everything, but then it is not mean that you allow them to touch you inappropriately.   01:27:35:13 - 01:28:00:21 Rose Sutton So we really delve into close friends, friends that are just kind of friends that you see every day. Maybe you're at the same group home, maybe at the same day support. Maybe you don't even know their name. So we really, really dive in on what that feels like inside. We give it a name and we actually even use a Pulpex board communication board within the program for those that may need additional assistance.   01:28:00:21 - 01:28:17:15 Rose Sutton But it's so hands on and interactive that we're trying to use as many centers as we can to really differentiate who is just a friend, who is not a friend, who is a stranger, what is a romantic partner. If you were to have one. We see that a lot where it's like, well, I see her every day and we're in the same group.   01:28:17:19 - 01:28:37:17 Rose Sutton So that's my girlfriend. Do you actually know that? You both people know that and they feel sometimes that if they are boyfriend and girlfriend, that that gives them permission to touch the other person even when they don't want to be touched? We really delve into, okay, well, my friend gave me a hug in the morning and in the afternoon.   01:28:37:20 - 01:29:00:18 Rose Sutton I'm just going to hug them again and maybe the person is a wanted. So all of a sudden they don't want to be touched. And so we talk about someone who might change their mind, even talk about if you're in a romantic relationship, even if you are a boyfriend or a girlfriend and you're interacting with this person and maybe you're out on the outing, you can tell your partner, No, I don't want to be touched.   01:29:00:20 - 01:29:18:20 Rose Sutton And that person is going to respect that. So we talk about not only giving permission, but receiving that information, receiving those questions, and that sometimes people don't say anything. Sometimes you may ask the person, Hey, can I have a hug? And sometimes there's no response. So they figured, okay, well, they didn't say no, so let me go in there.   01:29:18:22 - 01:29:46:20 Rose Sutton We practice. What does no mean by going around the room individually and saying we throw out different silly ones like, Hey, can I have your hat? Hey, can I have your glasses? And we specifically practice saying that we practice practicing. Yes, we practice different things and we demonstrate different ways of doing that to include sign language. Here we include nonverbal communication and what it looks like in each individual type of relationship.   01:29:46:22 - 01:30:10:21 Molly Dellinger-Wray I want to add to that too. And when we talk about unhealthy relationships as family members, first of all, what I always say to people is there's no shame. And being in an unhealthy relationship, I talk about this a lot and I've talked to a lot of people and I have never met anyone who has not been in an unhealthy relationship at some point in their life.   01:30:10:23 - 01:30:32:01 Molly Dellinger-Wray That's important to remember. We are not all traumatized by those unhealthy relationships for the rest of our lives, but we all know what an unhealthy relationship feels like. And we've all been in an unhealthy relationship. And I think that's important to remember. And I always say to people, everybody's been in an unhealthy relationship. Your parents have been in one, the president has been in one.   01:30:32:01 - 01:31:01:21 Molly Dellinger-Wray Everybody has had an unhealthy relationship at some point in their life. There's no shame in that. And then also what we know about trauma and what we know about abuse is that if you experience something that seems unhealthy or even illegal, which is hard to discriminate, if you tell one person it doesn't have to be law enforcement, it doesn't have to be the YWCA, a domestic violence shelter.   01:31:01:23 - 01:31:35:23 Molly Dellinger-Wray If you tell one person that is the first step in getting to the other side of that trauma. So just one person and oftentimes it's a parent, although we can't assume that every child has a healthy relationship with their own parents, we want a trusted adult from school, a neighbor, a family friend, someone who is that person's go to person, that if they're in a relationship that makes them uncomfortable for any reason, that they can talk to this person.   01:31:36:00 - 01:31:58:13 Molly Dellinger-Wray And as adults, we do this all the time. We might have an interaction with somebody and say to a friend or or a partner, you know, wow, the weirdest thing just happened. I said this to the mail carrier and he said this to me, You think that's weird? I think that's really weird. And so we kind of process those things in our own way, and we want our kids to be able to do that, too.   01:31:58:13 - 01:32:20:13 Molly Dellinger-Wray To have one person who they can trust, who's not going to judge them, who's not going to blame them and say, well, maybe if you weren't wearing that, this wouldn't have happened. So we want to skip the blaming the victim and just be able to have that one person that they can trust and talk to if they're in a relationship that makes them uncomfortable in any way.   01:32:20:15 - 01:32:39:21 Molly Dellinger-Wray And the other thing, and I think most families know this now, is that you want to establish a code word that your kids can say or a phrase that's just a way for them to say, you know, I want to get out of this situation and I, I don't know how to do it. And I need help from an adult with my kids.   01:32:39:21 - 01:33:02:06 Molly Dellinger-Wray And I'm a parent of a child who is diagnosed with autism. Also, we had a code word for when he was with a friend that he wanted the friend to leave or he was at someone's house. So they extended an invitation and he didn't know how to get out of it. And with my daughter, too, we had a phrase that they would say and I'd say like, okay, you know, I'll step in and say, they've got to come home now.   01:33:02:06 - 01:33:09:07 Molly Dellinger-Wray We have stuff to do, but they can't be with you anymore. It's good to have that code word that a skateboard.   01:33:09:09 - 01:33:31:16 Erin Croyle It's interesting you say that because it was literally writing down as we're talking to. Remember, the question's not even a question for y'all, but so many of our kiddos. I say kiddos because our demographic here for the podcast are parents and caregivers, right? I'm not trying to contribute to the infant realization of people with intellectual disabilities. I think that's part of the abuse problem.   01:33:31:16 - 01:33:56:17 Erin Croyle Frankly, I think it's important that we look to our communication devices that our children use so they have a place on their device where they can have that safe word, but also have ways to report abuse. And I would encourage people to, even if your child is working with a speech therapist at school who uses devices to make sure that that's included in some of the work that they do, because this is such a ramp IT issue.   01:33:56:19 - 01:34:21:17 Erin Croyle In fact, the US Department of Justice, its most recent report, found that the rate of violent victimization against people with disabilities is almost four times the rate of people without. So that's 46.2 people per 1000 and that's age 12 or older. And then when you break it down by disability, those with cognitive disabilities have the highest rate, so it's 83.3 per 1000.   01:34:21:19 - 01:34:45:21 Erin Croyle And those numbers don't even account for the repeat victimization that we see. That's really common. You know, Molly, you and I have talked about this a lot. Some of the ways that we can prevent this because it just continues to happen. In my personal circumstance, we make sure that all of our kids know to say penis, vulva, vagina, breast, like we we have silly words, Sure.   01:34:45:21 - 01:35:03:15 Erin Croyle But we use the real words. So what are what are some ways that we can prevent abuse but also help our children be able to talk about whatever is happening to them so people can understand them? And when I say talk, I mean communicate in whatever way that we communicate.   01:35:03:17 - 01:35:31:02 Molly Dellinger-Wray Well, I think you you mentioned a really important one, which is making sure that kids know the correct name for body parts, but also that saying the word penis or vagina or vulva or anus is not dirty or secret or bad, that it's okay to say those words. It's not a word that you want to be shouting out at the mall or or whatever, but that it is it's okay to say those words that nothing bad is going to happen to you if you say those words.   01:35:31:02 - 01:35:55:19 Molly Dellinger-Wray So it's important that that they're just aware of those correct terms if they need it so that everybody understands what they're talking about. And if someone asks them a question, they know what that means. Like, did someone touch your vagina? So that's certainly a big step. What Rose had talked about is asking permission to touch and respecting your child's boundaries is another super, super important thing to do.   01:35:55:23 - 01:36:20:10 Molly Dellinger-Wray Just honoring what is a friend and having that trusted person is also really important and making sure that your child knows the rules for healthy touch. And the rules are you get to decide who touches you and the second rule is you can change your mind because someone touched you yesterday doesn't mean they have permission to touch you today.   01:36:20:12 - 01:36:55:10 Molly Dellinger-Wray You can change your mind and actually you can change your mind in the middle of them touching you if you want. When you say I want this to stop now, it has to stop now. And the other thing that we need to explain to people is that private touch is okay and sexual touches okay, as long as it happens between two people who consent and then it's an place, you know, we hear a lot about people with disabilities who want to touch each other sexually in a closet or in a and someplace where they can be alone, which is not an appropriate place.   01:36:55:12 - 01:37:18:15 Molly Dellinger-Wray I talked to a parents once whose daughter went out on a date, and when she came home, she said to her mom, He kissed me and the first thing her mom said was, Did you like it? Which I thought was such a great way to to honor and respect that child, was that this has to be something that you like and enjoy, you know, didn't make you feel uncomfortable.   01:37:18:19 - 01:37:43:06 Molly Dellinger-Wray And that's the other question. It is really kind of just checking in with people about is there anything that happened that made you uncomfortable? Is there anything we could do differently next time when you're with this person? You know, my child with a disability, he spent a lot of time in rooms with the doors closed, with speech therapists, an occupational therapists and tutors.   01:37:43:08 - 01:37:57:01 Molly Dellinger-Wray That's part of what is a necessity in life. But I think it's also something that we need to say. You know, is there anything that made you feel uncomfortable or you want to change for next time? Because if there is, let's talk about that.   01:37:57:03 - 01:38:25:04 Rose Sutton I'd like to add to that. So in our second day that we're there. We do talk about the body part and we talk about the names of them. And it was such an eye opener that one time we did go in and teaching them the appropriate names for body parts. Some of the kids, the students have never heard of those body part names because it's so much slang that's used that they were offended because we were use the proper names for these body parts.   01:38:25:06 - 01:38:45:12 Rose Sutton So we do explain that the reason why we have to learn the proper names for these body parts is because if you're in an accident or if you need to call 911 for any reason that you have to know what body part hurts. So we break it down per men. And then we do a female version. We're not taught to be able to talk about these things.   01:38:45:12 - 01:39:17:12 Rose Sutton We're not taught to understand that we're even allowed to even say these words. I mean, we you know, our kids go through sex education, but with this class, we actually go into it a little bit more. We actually talk on this difficult subject that we have like this little popcorn game. And what we do is to get the students laughing and giggling and to make a little bit more light of a very serious topic is we create a list by the students and they can speak it freely.   01:39:17:12 - 01:39:33:14 Rose Sutton And what we do is we start with men first and we start with them and then we do women separately. And the goal is to talk about all this language. So we say, you know, what are the slang words for men? Body parts? And you hear all different types of jargon that people use for slang words for people's body parts.   01:39:33:14 - 01:39:56:05 Rose Sutton And we talk about, you know, your ass or your tits or your boobs or your penis. I'm not your penis. I'm sorry, but your dick. And sometimes we hear people saying, My Wilson or Big Dog or you hear these things and someone on the receiving end, what that means. And so we really try to talk about it by practicing what's the words they probably hear.   01:39:56:07 - 01:40:20:04 Rose Sutton But what are we talking about? So we're giving them permission to be able to say these things. And sometimes when we go and this is the first time they've actually heard the proper term for these things. So that's really an eye opening and we give them permission to talk about it. And last night was such a cute group because we were talking about it and some of the students that were my deaf students really weren't feeling it.   01:40:20:04 - 01:40:42:03 Rose Sutton They must have been having a bad day. And we started talking about the body parts and giving them permission to actually say these words, which normally you don't hear them saying or you hear them just saying them loosely, really caught the attention of the students and really brought it to life by us. Just taking this difficult topic and making light of it and that it's okay to talk about it here with staff.   01:40:42:03 - 01:41:00:11 Rose Sutton But we also tell them, But you only can talk about these things here. We don't want you to go out and start saying these words randomly. we do want you to know where these things are appropriate to talk about. How do you appropriately say these things? And by giving them the opportunity to practice shouting out different slang terms.   01:41:00:11 - 01:41:17:18 Rose Sutton And some of them, we don't even know what they are. We write them down. They get to see that all we wrote their thing down. They matter. Their voice matters because we wrote it down on the board. You know, we wrote it down so that even if it was a duplicate, even if someone says another word, someone else had said, we still write it down.   01:41:17:18 - 01:41:26:18 Rose Sutton Why? Because that gives them power that what they said mattered. And it shows by it's on the board, something as simple as that. So it's a great tool.   01:41:26:20 - 01:41:50:18 Molly Dellinger-Wray And Rose, you do a really good job at teaching people the correct names for body parts and teaching that it's okay to say them. There are some trainers that are really uncomfortable talking about this. Rosa and I have worked with a lot of younger trainers who are really just out of school themselves and they're they feel a little weird talking about penises and vaginas.   01:41:50:20 - 01:42:07:16 Molly Dellinger-Wray And I I'm not faulting them, although we do say this is part of being a lead trainers. You have to be able to say these words without flinching. And Rose, you just do such a great job with it and just has fun with it, you know, just have fun with people while you're going over it. You just do a great job.   01:42:07:18 - 01:42:22:24 Rose Sutton And thank you. I think part of that is I take it to heart when these students come to me that I feel like I'm training one of teaching one of my kids. And in sex education, I don't think that we get the opportunity. We're just shown films, We talk about these different things and we want our students with disabilities to remember these things.   01:42:22:24 - 01:42:37:21 Rose Sutton And so we make fun of it, and then we talk about what is appropriate, and we even give them permission that if they feel a little uncomfortable, put your hand over your heart or raise your hand or step out for a moment if you're allowed to and understand this is a little bit uncomfortable and we're trying to help you through it as best as we can.   01:42:37:21 - 01:42:59:03 Rose Sutton And in the sessions, we usually don't have their caretakers or their aides or their in the room so that we can get them by themselves to just talk to them. But yesterday was so great. So we had a lot of interaction and it makes it a lot more fun because the kids are able to just say words they normally can't say.   01:42:59:05 - 01:43:13:04 Rose Sutton And we did it in the safe space and talk about, you know, that it was a safe space and we were giving them permission to to talk about it. And they're not used to getting permission to say those bad words. And so we gave them permission to do that. It's a really great program.   01:43:13:06 - 01:43:39:11 Erin Croyle Because you bring up such a good point. And you mentioned sex education and LEAP is way more than that. But when we think about what our children are taught in schools, we talk about modifying curriculum, but we don't do a good job modifying sex education. And then I think about when you have self-contained classrooms, you have a completely different experience from what a lot of other non-disabled students have.   01:43:39:13 - 01:44:04:20 Erin Croyle And my house is different because we're very, very open. My mom was a nurse. I've always talked openly about body parts and all those things, but I think about some families who there are words that are just not okay and people who are not comfortable saying penis or breasts or whatever. And so it's really code words. But I also see my 13 year old son with Down syndrome who loves to say penis and finds it hilarious.   01:44:04:20 - 01:44:24:07 Erin Croyle And so to give people space to be who they are and be the adults in the silly sexual, ridiculous humans that we all are, that sounds like a really great way to be able to relate and get them to open up and learn because we learn through having fun, don't we?   01:44:24:09 - 01:44:49:00 Molly Dellinger-Wray And what is what you said to Erin about, you know, oftentimes kids with disabilities are excluded from family life education, or they have to participate with permission from a family member who's uncomfortable with it. So oftentimes they miss out on that. And what I always say about Leap, which I don't think we mentioned earlier, LEAP stands for Leadership for Empowerment and Abuse Prevention.   01:44:49:05 - 01:45:26:04 Molly Dellinger-Wray And I'm pretty clear that a lot of what they talk about is family life, education, our sex education, our topics that we talk about and leap as far as consent, but leap just to kind of stay in our lane. Leap is not about dating. It's not about social skills. It's not about sex ed in terms of what goes where it's healthy relationships and healthy relationships affect all of us, whether there are relationships with our family members or with our peers at school, or with adults who are in our lives or our neighbors or people that, you know, on the Internet.   01:45:26:04 - 01:45:46:06 Molly Dellinger-Wray They're all relationships. And those relationships are in those three buckets healthy, unhealthy or confusing, even if you've never met the person, if it's an Internet relationship, if you've never had a relationship face to face with that person, those kinds of rules about healthy relationships apply to all relationships.   01:45:46:08 - 01:46:12:19 Erin Croyle I want to take a minute here. When we're talking about relationships, we're all parents and we are the ones that are modeling for our children. What a relationship should look like. And I want to be very, very real and transparent here. For anyone listening as parents, and especially when you have a child who has significant needs, it can be really hard.   01:46:12:21 - 01:46:37:24 Erin Croyle And we are imperfect people. And I will admit that there are times where I have yelled at my son or got frustrated with my son and even lately just helping him make sure he's bathing properly and, you know, maybe him being frustrated with me washing hair or whatever. And I find myself thinking, okay, I'm his mom, so okay, there's a boundary, but less of a boundary.   01:46:37:24 - 01:46:58:14 Erin Croyle But he's 13, so there should be a boundary. And so when I cross the boundary myself, because we do and I do things I regret all the time, I find myself saying, Arlo, I'm so sorry. You're right. I shouldn't have blah, blah, blah. You have every right to be mad and to say no, and I'm going to respect that next time and please keep sticking up.   01:46:58:16 - 01:47:19:18 Erin Croyle So what's the line for parents between what is just normal every day? This is hard frustration and parents. Okay, This is borderline abusive. And how can we take what we're doing and make sure our kids are learning what's right from wrong, even though we are imperfect and making mistakes all the time with them?   01:47:19:20 - 01:47:46:14 Molly Dellinger-Wray I absolutely agree with you. There were times with my own kids that I would say like, I'm so mad, I'm putting myself in timeout. I'm going screw and closing the door and no one even opened it. So I think we all have these moments of, my gosh, have I have I been a terrible parent? And I think one thing to notice is that abusive relationships are different from anger management.   01:47:46:20 - 01:48:08:23 Molly Dellinger-Wray Okay. So when you hear about anger management or people that have a problem with anger, that's like someone who's going to punch somebody out in front of a policeman or for basketball fans. I also think about the technical foul. The person who deliberately does something in front of a referee that is going to get them in trouble. That is an anger management issue.   01:48:08:23 - 01:48:40:10 Molly Dellinger-Wray And when you snap at your child or you've had enough and it's one of those days and it's a one and done, that's not abuse, okay? Abuse is very calculated and perpetrators of abuse are very, very it's not losing control. They are extremely controlled. They control when they're have opportunities to be alone with that person. They take a long time to really create those opportunities that they can weasel their way in.   01:48:40:14 - 01:48:53:17 Molly Dellinger-Wray So it's very different from, as I said, a one and done parent who's angry with their child and blows up. That's not abuse, that's being angry. And oftentimes it's very justified. Anger.   01:48:53:19 - 01:49:14:16 Rose Sutton I think that touches on a good point because we do talk about feelings in this class a lot and that it is okay to have certain failings, even if someone else does not have those feelings. And in this training, we have a power statement and we do it at the beginning and at the end of every session and it says I am strong, my feelings are important, I deserve to feel safe and I deserve respect.   01:49:14:16 - 01:49:34:17 Rose Sutton And we talk about what those things are. So as a parent and, you know, for myself, there are those power struggles and that is why early intervention is really key. Because if you can model these things and practice these things, eventually you can build on an each time. So like for my kids who are on different ends of the spectrum for the younger two kids, they have boundary issues.   01:49:34:19 - 01:49:56:08 Rose Sutton And so we really had to practice that. And in order to keep myself calm was to kind of learn about it myself to either get help if I did not know and to give myself permission to to know that I am an imperfect person and then I am going to make mistakes. But being woman enough to demonstrate that, I can say to my child, you know, I'm sorry, I was wrong.   01:49:56:08 - 01:50:20:05 Rose Sutton So like you said, Erin, for us as parents or even caretakers to demonstrate that sometimes we even make mistakes and there are times, yes, we do have to wash their hair. We do have to touch them. And you're right, as my son was getting older and my husband being deployed, a lot of times I wanted to set an appropriate boundary on making sure that he cleaned properly.   01:50:20:07 - 01:50:44:24 Rose Sutton And so I learned techniques by asking, you know, their providers and other parents, how can I give him space as a young male to be able to properly do hygiene? And so what we ended up coming up with was a picture schedule that we laminated and put in the shower. That way I was able to give him space and my son, he wanted like all this hair and he did not like to have this haircut.   01:50:44:24 - 01:50:58:17 Rose Sutton So we had all this hair and so he did not like us touching it because we were going to mess it up. And so I had to explain why I needed to wash his hair and that we would do it at a different time, that it didn't have to be when he was taking a shower. We would do it separately.   01:50:58:17 - 01:51:15:22 Rose Sutton So that way he was dressed and I was respecting his boundaries that he was that I acknowledge that he was developing into a young male. So like you said, Arlo's 2013 and my Christian, he he was incontinent for a long time. I mean, till he was like ten, you know, he didn't want me to go in there and clean his bottom.   01:51:15:22 - 01:51:41:03 Rose Sutton If I did try to go in there, he would get very upset. So I had to honor that. And it's very a different type of parenting, especially when my older two were neurotypical to to catch my own self on what I'm doing inappropriately. And once again, to find something that worked for that time. And when you finally think that you have the right solution and it's working and you're like, Great, this is working, can wash his own hair.   01:51:41:05 - 01:52:01:05 Rose Sutton You can take his own bath. We do a smell check afterwards, and we still we figured out that he missed some place. We send him back in. You think you have it and you're on a routine and then something happens and then it changes. So as a parent, you know, we want to be flexible, you know, and how can we adapt these things to make it that you're empowering them on making decisions.   01:52:01:05 - 01:52:19:02 Rose Sutton And if you have to do something that that may be inappropriate or you're washing your child, you don't want to go and then have to wipe the child's, you know, But so as a parent, you have to teach them, are we going to do this that is appropriate for them to do it on their own? And there's different techniques and.   01:52:19:02 - 01:52:35:22 Rose Sutton It's really hard to find the right one. So as more to the parent, you try to figure out what is the best source, but like you said, is by educating ourselves or learning or talking about or just trying something randomly, just trying and seeing how you can get your child to you want to empower them on how to be able to do it themselves.   01:52:35:22 - 01:52:53:11 Rose Sutton And it takes a lot of work and it can be very stressful. And I always tell parents, you know, you need to practice self-care and what does that look like? And for me, I didn't even know what self-care is because you're constantly on the goal. You're constantly having to make sure they. Both of my kids were loopers, so I'm having to chase them down and I'm constantly tired.   01:52:53:11 - 01:53:14:06 Rose Sutton They don't sleep, they don't like touch, they don't like certain things. So as a parent, you're constantly going, but if you think about it this way is that if you can empower your child to do these things for themselves, yes, it's a lot of hard work, but then you don't take a lot of load off of you and you're empowering them to be able to set their own boundaries so that way a lot of us parents, we worry about what happens when when we pass away.   01:53:14:12 - 01:53:30:04 Rose Sutton Well, if you can teach them every little step as you continue to grow, that that repetition will eventually build to where you won't have to even think about it anymore, where they'll have some understanding of what is appropriate, what is not appropriate, and how to handle some self care on their own.   01:53:30:06 - 01:53:46:08 Erin Croyle Rose I'm like internally clapping because everything you said is so spot on. And I love the idea of the picture schedule for the shower. I'm going to try that because I think for all my kids, honestly, hygiene and at a certain point they.   01:53:46:08 - 01:53:47:19 Molly Dellinger-Wray Don't quite get that you.   01:53:47:19 - 01:54:12:21 Erin Croyle Need to wash certain spots or you're going to be the stinky kid. And I love that. You also said you have to just keep trying different things because I know for privacy, whatnot, there's all sorts of social stories out there and I'll put some links in there for social stories and other strategies that people can use for some of these really touchy things that have to do with privacy and showering and toileting because it is hard.   01:54:12:24 - 01:54:30:19 Erin Croyle And in my own experience too, sometimes you try and try and try and sometimes you just have to give them the time to get to that point. So you may be pulling your hair out, but it it'll be something else. Once they master the thing you're trying, they'll be something else to do. But anyway, Molly, you have a heart out.   01:54:30:19 - 01:54:56:06 Erin Croyle So I want to get to just at least two more questions. And one of them I really want to know because you two will probably know what are signs of abuse. I mean, especially when communication is nontraditional or limited. What should parents, caregivers, teacher, whoever is listening, what should we be looking for if our person is not able to communicate it?   01:54:56:08 - 01:55:29:17 Molly Dellinger-Wray Well, that's a really good question. And what I say is every parent knows their child and if their child doesn't communicate with words, they have another way to communicate. And so parents know their child. If there's a change that you don't understand, if there's a behavioral change, sleep problems, problems with not wanting to bathe or keeping a lot of clothes on, or just a behavioral change, that's something like we we just need to investigate that.   01:55:29:17 - 01:55:59:18 Molly Dellinger-Wray And it could be a number of things. It could be an illness, it could be any number of different things. But any kind of change, just as something to kind of have your antenna out for. As I said, also, I left my kid in rooms with adults and the door closed hundreds of times and thankfully had the most wonderful adults in my child's life and a lot of early intervention that really created such a difference for him.   01:55:59:18 - 01:56:24:23 Molly Dellinger-Wray And I am eternally grateful for every single one of those people that helped him. But not everyone is that person, and a lot of people who seek power seek out opportunities to work with a very vulnerable population, and that is AIDS and special education classrooms and people who work in nursing homes. And, you know, a lot of of those opportunities.   01:56:25:00 - 01:57:00:11 Molly Dellinger-Wray And so just honestly, just being aware and acknowledging the hard fact that a lot of kids with disabilities do experience abuse. And then the other thing to remember is if a child does experience abuse, an unhealthy relationship, a sexual, there are lots of ways now to come out on the other side of that. So they will not be scarred for life and they can grow up to lead rich, healthy adult lives with healthy sexual relationships.   01:57:00:13 - 01:57:23:15 Molly Dellinger-Wray On the other side of that, the the main thing is that it is not compounded by shame and guilt. And one of the biggest things that we do as family members and our parents and adults said to us are the don't rules. Okay. One of the don't rules to keep yourself safe. Don't get into a car with someone.   01:57:23:17 - 01:57:59:21 Molly Dellinger-Wray Don't talk to strangers. One woman with a disability told me, don't sit next to a man. And so we teach. A lot of these don't rules, but what we know is that perpetrators are really clever and we don't like to think of this. But perpetrators are super smart about creating opportunities with potential victims. And so what we want to do is not have our kids be a soft target for those people, but also to not create a lot of shame surrounding, my gosh, I got into a car with someone.   01:57:59:21 - 01:58:22:03 Molly Dellinger-Wray This is all my fault. I wore a sexy dress. This is all my fault. I went out at night. I left my drink on the bar while I went to the bathroom. None of those are reasons that people should experience abuse. And so we need to just to level the playing field. And with starting out with not your fault.   01:58:22:05 - 01:58:48:00 Molly Dellinger-Wray Okay? And if something happens, it's okay to tell me. Sure. We don't want to say like go off and get into a car with a stranger. We don't want to give people. We want to teach them safety rules. But what we know is that perpetrators are really, really smart and they know about code words and they know about bombs, you know, and they know about lost puppies and all kinds of ways to coerce people into doing things that are not good for them.   01:58:48:05 - 01:59:10:17 Molly Dellinger-Wray And so what we need to do is say, you know, did anything make you uncomfortable? Is there anything you want to change for next time? It's okay to tell me that because I'm not going to be mad at you. I just feel like that's super important because if you are someone who's been told, don't get into a car with someone and a really smart perpetrator pulls the I lost my puppy.   01:59:10:17 - 01:59:39:24 Molly Dellinger-Wray Can you give me directions? One of the many ruses that they have to have an opportunity with the child and the child complies with them because of trained compliance, because of all the rules that we've taught kids about being respectful to adults and they experience abuse, we don't want them to think it's their fault because that is going to compound shame and a lot of trauma surrounding assault where they will never tell anyone.   01:59:40:01 - 02:00:06:18 Molly Dellinger-Wray That's just very important. I always tell a story of I had a very dear friend who was an adult who had a brain injury and dementia, and she was not financially secure. She lived in a low income apartment building near me and she wrote a check for two thirds of all the money she had in the world to a man that she met in the hallway of her building.   02:00:06:20 - 02:00:33:10 Molly Dellinger-Wray And we were able to get the money back. But what she kept saying was, I'm so stupid. I'm so stupid that I did that, that I gave away my money and what I had to keep saying was you weren't stupid. People are really tricky and people will try to trick you. And that's okay. The important thing is to let someone know because people will try to trick you and it's not your fault.   02:00:33:12 - 02:00:38:13 Molly Dellinger-Wray So I think that empowers people a lot.   02:00:38:15 - 02:00:59:07 Rose Sutton I think also I'd like to add to that is, you know, I have a friend who whose child is on social media and of course, they're trying to attract friends. And when we talk about abuse, we also have to think about like this man's daughter. What was happening was that she was taking pictures of herself undressed, inappropriate pictures of herself and sending it to this person.   02:00:59:08 - 02:01:17:07 Rose Sutton So he had noticed like there was some behavior change and he was saying, well, what's going on? And he didn't felt that she was being abused because she was always homeless. He says, well, she can't be abused. We're always here, you know, And this was when COVID and we were all isolated. But yet this child was taking pictures of herself.   02:01:17:07 - 02:01:46:00 Rose Sutton You know, that's also abuse. They don't have to physically touch you. They could take a picture. You could take pictures of yourself, and they can cause you to to share these things, you know, on social media. And so we have to be really careful with that. Also, you know, a lot of our kiddos have phones now and they want to be friends with someone, so they send the pictures all we had a young girl who had met someone on Facebook and had become real close friends and eventually told this person where she lived and that this guy was like, Well, I want to marry you.   02:01:46:02 - 02:02:07:11 Rose Sutton And she was about 17 and he wanted to marry this young girl and invited him over to her house. And she was right in her room. And the brother the brother was downstairs in the basement and she was on the third floor and they didn't know what really what was going until the abuser was walking out the door.   02:02:07:11 - 02:02:27:19 Rose Sutton And he was like, well, who's that person? When did you come in the house? So we really have to think about how we're you know, watching that and really pay attention to behavior. You know, we always focus on negative behavior, but sometimes a child continues to come and tell you someone will touch me inappropriately. Okay, Well, well, they made me feel weird or they made me do that.   02:02:27:19 - 02:02:50:04 Rose Sutton And sometimes it may be nothing. But you also want to take them seriously and give them permission to tell you these things and not to say, they wouldn't, you know, Grandpa would not do that or Uncle Johnny would not do that. You know, you were just playing. But yet I have seen and had heard stories from from students who have told us that sometimes they created as a game, like Molly said, they're very smart and display touch game, but this is what it looks like.   02:02:50:09 - 02:03:07:05 Rose Sutton Well, you know what? I do love you. You know, let's let's go ahead and let's do some inappropriate touch or you go ahead, masturbate, and I'll just watch you. So I'm not touching you. I'm just watching you. You show me what it looks like. And that's also a form of abuse. And we need to teach our children that that's not okay.   02:03:07:07 - 02:03:37:04 Molly Dellinger-Wray Two other things that I want to squeeze in here. Okay. So one is that oftentimes I hear parents saying, don't let anyone touch you on your penis, on your breast, on your whatever. That puts a lot of pressure on the child who has to be the boss of someone who may be trying to touch them in an inappropriate way by saying you let them touch you, don't let anyone touch you there.   02:03:37:06 - 02:04:03:06 Molly Dellinger-Wray That's a really hard thing to do. So, you know, might be better to say, you know, if someone touches you on your penis, if someone touches you in your vagina, I want to know about that because that's a private place. That's a place where you get to decide who someone touches you there. So the don't let someone touch you is really a very hard thing for a child to do and can often really compound the trauma.   02:04:03:08 - 02:04:11:05 Molly Dellinger-Wray Another thing is the bathing suit rule. Can we talk about the bathing suit rule? Does everyone know what the bathing suit rule is?   02:04:11:07 - 02:04:27:18 Rose Sutton Yeah. So we talk about areas that are touched that are, you know, where our bathing suits are. So, you know, for women, we usually have the top we have the the top part is and we have the bottom part or sometimes we have the full suit. So we teach them. Those aren't considered private body parts, anything that's under those parts.   02:04:27:18 - 02:04:37:10 Rose Sutton And for men, you know, they have the shorts on. So anything under there, you don't want to touch them. And sometimes they wear shirts also that's covered. Those are private anything that your bathing suit covers.   02:04:37:12 - 02:04:58:22 Molly Dellinger-Wray So the bathing suit rule is a good rule, but it's important to remember the bathing suit rule does not cover everything. And there are lots of ways that people can touch people sexually with their mouths that are not covered by your bathing suit. And so oftentimes people are taught the bathing suit rule and was like, well, it wasn't in the part that my bathing suit covers.   02:04:58:22 - 02:05:11:06 Molly Dellinger-Wray It wasn't my breasts or my penis or vagina or my penis. And so this doesn't really apply to the bathing suit rule. So the bathing suit rule is a good rule, but it's not the it's not comprehensive.   02:05:11:08 - 02:05:30:24 Erin Croyle And that's good to know. I hadn't heard that rule, and I guess I won't be sharing that with my kiddos. We have listeners who are overseas who are in other states. You know, Leap isn't everywhere, but if someone wants to find information and learn more and do something like LEAP, what do you recommend?   02:05:31:01 - 02:05:58:19 Molly Dellinger-Wray There are lots of healthy relationship curriculums out there. You know, a simple Google search would reach it, but also as part of the LEAP Project, we do webinars probably three or four times a year. The next one we're doing is March 18th, and those are webinars for family members and other adults who help support people with disabilities about fostering healthy relationships and abuse prevention.   02:05:58:21 - 02:06:13:03 Erin Croyle my gosh, that's perfect. Molly, You'll have to give me that information. I'll put it in the show notes so people can register. I cannot thank you enough. I feel like we might have to touch on this again one day and continue the conversation because there's so much here.   02:06:13:05 - 02:06:20:07 Molly Dellinger-Wray Thank you so much.   02:06:20:09 - 02:06:41:16 Erin Croyle And thank you listeners for joining us. Please rate review and share this podcast of ours. We'll be covering nutrition, employment and so much more this season and be sure to check out our lineup for our first season as well. This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

Self-care is something we all need to do. But for many of us, it's an elusive practice. Caregivers are working harder than ever. Which makes self-care more important than ever. Knowing how real this struggle is, I reached out to my friend and chiropractor Dr. Sarah Gardner. She gets it, and has so many practical, doable ideas for how we can make self-care happen!   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:   Dr. Sarah Gardner is co-founder and co-owner of FLX Athlete Retreat.    All of the suggestions for movement, hydration, nutrition, apps, and much more are here.      TRANSCRIPT: 01:00:07:23 - 01:00:35:00 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. My beautiful tangent came in 2010 when my first child was born with Down's Syndrome. I joined the Center for Family Involvement at VCU's Partnership for People with Disabilities. A few years after he was born.   01:00:35:02 - 01:00:58:14 Erin Croyle Utilizing my journalism and television producer background as a communications specialist, it's amazing to be in a position where I can share stories unique to families like ours. One thing we talk about in our circles, but certainly don't do enough of is self-care. In fact, many caregivers I know scoff at the idea, myself included. It's not that we don't see its value.   01:00:58:18 - 01:01:21:22 Erin Croyle We just can't seem to make it happen. The lives of folks like us who are caring for a loved one for life are just different. The physical, mental and emotional demands are constant. Even if you manage to get some time away, there's no time off when someone you love needs constant support. This is why basic self-care is so critical for us.   01:01:21:24 - 01:01:46:11 Erin Croyle So how do we make it happen? To talk about this, I've invited my friend and my chiropractor, Dr. Sarah Gardner, on. She and I have been shooting the breeze for nearly two years. I found this amazing woman while recovering from hip surgery. Dr. Sarah gets it. She provides care with compassion and understanding in our many hours together, we've laughed at how ridiculous fad diets are.   01:01:46:13 - 01:02:00:22 Erin Croyle We commiserate on how impossible it is to juggle it all as parents. We praise the Almighty Oatmilk latte and we swear way too much.   01:02:00:24 - 01:02:25:02 Erin Croyle Sarah, thank you for spending some of your precious free time with me. For our listeners, I just want to paint a picture here. You're a mother of two, a business owner and ultra marathoner who's married to a CrossFit instructor. You're all about body positivity and health at any size. You stressed the importance of rest and having fun. The times when I've come in and admitted to you that I haven't done any of the things I should have.   01:02:25:03 - 01:02:49:07 Erin Croyle You validated how hard it is and encouraged me to just try to do one or two things. I always leave our appointments feeling heard, understood, and more hopeful. The business, by the way, is Flex Athlete Retreat, located in the Finger Lakes, Ithaca, New York, to be precise. It's this little haven where you have chiropractic services. Your colleagues do massage therapy and acupuncture.   01:02:49:09 - 01:02:56:01 Erin Croyle The space is this oasis with an amazing green velvet couch. Did I sum it up correctly?   01:02:56:03 - 01:03:16:16 Dr. Sarah Gardner Yeah, I think you summed it up. Thank you for the introduction. I think the first time I met Arlo was on the green couch, so some good memories there. And yeah, absolutely. The almighty book Milk Latte is what powers me through my day most of the time. Yeah, I'm pretty in it in terms of trying to figure out that work life balance.   01:03:16:17 - 01:03:26:11 Dr. Sarah Gardner My kids are two and seven and this business basically eats up my entire life. So I think I think you got it all correct there.   01:03:26:13 - 01:03:38:05 Erin Croyle I always love hearing people's origin stories. So what drew you to this kind of work? And then also, I'm really curious how your perspective has changed over the years, seeing so many different people.   01:03:38:07 - 01:03:59:06 Dr. Sarah Gardner Yeah, so I was a collegiate track and field athlete. I read Cross Country as well, and then I had an injury my freshman year and I was just really kind of underwhelmed with the way my Western med practitioners handled it. They weren't making contact with the problem area, vaguely listening, but kind of just throwing and NZ at it.   01:03:59:06 - 01:04:36:15 Dr. Sarah Gardner And I just felt like we could have managed that a lot better as a team. So I became kind of disenchanted with Western medicine. My undergraduate studies were an exercise physiology, which is just pretty broad spectrum. Learning a lot about human movement and biomechanics and just general health and biology. And we actually had a chiropractor come and speak to one of my survey classes and described what he did, and it was one of those moments for me where it was like, I can take everything I learned and have loved about biomechanics from being an athlete and really combine it with health care and caring for people and sort of contribute to the world   01:04:36:15 - 01:05:05:23 Dr. Sarah Gardner of sport for years after when I'm able to be a competitive athlete myself, I think my my goal when I started out was to just kind of create a space where people felt safe and listened to just because that hadn't been my experience, the whole other podcast. But yeah, and I think breaking down that doctor patient boundary and fostering trust and open communication with my patients with the goal of creating better outcomes and I do think that that's worked over the years.   01:05:06:03 - 01:05:36:08 Dr. Sarah Gardner And then as far as my perspectives changing, it really has I started off marketing specifically to athletes just because that's the world I came from. But I get to talk to, let's say 6 to 14 people a day, one on one for 30 to 60 minutes. And so my understanding of how we define athlete has definitely evolved over the past ten years, just because I've learned and appreciate so much differently the physical, emotional and mental demands of everybody's day to day.   01:05:36:09 - 01:05:55:23 Dr. Sarah Gardner So when my business is called athlete retreat, but really we  treat everybody. I mean, we have people in the perimenopausal stage, we have people giving birth, we have teenagers, we have older adults, we have people recovering from surgery like yourself. So, yeah, it's we get to see a pretty diverse patient population. So yeah.   01:05:55:24 - 01:06:18:02 Erin Croyle Yeah, you must see caregivers that some of us have a lot of strain on our body just because we care for another person so intensely. It's really a lot of effort. In some ways, I know that some of my friends, some of the lifting that they do and some of the work that they do is is on par with heavy lifting and athletics.   01:06:18:02 - 01:06:19:03 Erin Croyle Yeah.   01:06:19:05 - 01:06:41:08 Dr. Sarah Gardner my God. I think that I mean, really what it boils down to it, everybody I see is a caregiver in some way. I have a ton of parents with children with or without disability. I have people caring for their parents, which I think is very challenging and a new chapter in a lot of their lives. So a lot of emotional stress which can manifest physically.   01:06:41:10 - 01:07:03:19 Dr. Sarah Gardner Everybody has these different things that they're caring for that are occupying a lot of space in their mind and body. Obviously, the most obvious definition of caregiver comes with caring for children, caring for an elderly relative, or caring for a child with disability. And those are where I see the most physical challenges versus the emotional strain that can also be very pervasive.   01:07:03:21 - 01:07:22:19 Erin Croyle One of the other things that I just love about you and why I just have to talk about this is that you keep it so real. You know, when I share with you in our sessions how hard it is to fit in strength training and you share your own struggles, like how you're doing this ten minute a day movement challenge.   01:07:22:21 - 01:07:44:22 Erin Croyle And then even though you're this accomplished athlete, it was hard at times. yeah. So when you're thinking about caregivers who are just up to their ears in it all the time, what can they do to build and maintain strength? Think about the beginners out there who might just be getting started. You have people who they get started and then things hit the fan.   01:07:44:22 - 01:07:46:18 Erin Croyle Kind of like me.   01:07:46:20 - 01:08:05:13 Dr. Sarah Gardner Sir. Well, I think the first thing we can do is take it just to define strength training. I think the form of exercise that everyone is the most familiar with is cardio. And that's where you're you're running, you're on the bike, you're getting your heart rate up, you're sweating, and you're really working your cardiovascular system and your circulatory system.   01:08:05:19 - 01:08:26:19 Dr. Sarah Gardner And that's incredibly important as well. And I don't think people struggle as much to identify ways that they can get cardio and. Right. You know, we all know we can take a walk. We all know we can we can bike whatever strength training is a little harder to pin down in strength. Training is any form of exercise where you use resistance to strengthen your muscles.   01:08:26:21 - 01:08:49:06 Dr. Sarah Gardner So I think that the go to for most people's minds is to picture like the big, neat, heavy type at across the gym, like my husband throwing around these huge weights. But that's really doesn't need to be our definition of strength training. I mean, we can look at ladies power, yoga, bodyweight exercise, resistance bands, all of these are different types of strengthening exercises.   01:08:49:08 - 01:09:17:01 Dr. Sarah Gardner And there's really no one size fits all for everyone that's going to be determined by your interests, your experience level, if you have any preexisting conditions or injuries, space, that it requires accessibility to a gym and no one is better than the others. So I think now that we have defined strength training, this is the tough one. We need to sort of reframe the paradigm in our mind when we're strength training for life instead of straight training for a sport, right?   01:09:17:03 - 01:09:42:01 Dr. Sarah Gardner So the trajectory when you're doing that looks a little bit different. And so you had mentioned the people who sort of get into it and then they fall out of it and they have to start from square one. And I think we have to start talking to ourselves that way and making it seem like the work we've done in the past doesn't count because it does count, you know, and just because you stepped away from an exercise for a while doesn't mean that you're starting from scratch.   01:09:42:01 - 01:10:04:07 Dr. Sarah Gardner You are still stronger than when you had done no exercise before. When we think about it like restarting and starting from scratch, that's a really real mental barrier for people. So if you're thinking about it like a continuation of something you already started, I don't think it seems so daunting. Do you know what I mean? So I like to think about it as a slow burn versus an explosion.   01:10:04:07 - 01:10:30:13 Dr. Sarah Gardner I would so much rather somebody choose a type of exercise that's maybe lower intensity, but they're able to do it consistently, maybe three times a week versus somebody going really hard with CrossFit. And I don't mean to speak ill of CrossFit, I love CrossFit, but something more high intensity like that where you exhaust yourself and you burn out and you can't recover and then you're taking weeks off at a time and then you are upset because you didn't meet your own expectations.   01:10:30:15 - 01:11:04:14 Dr. Sarah Gardner So I think having realistic expectations is almost as important as finding the type of exercise that works best for you. So that kind of leads me to my next point, which is I'll use myself as an example. I run ultramarathons and I ran one back in September with Koven, which was we're going to we're going to leave out the adjectives that I might use to describe that, but I think I'm dealing with a little bit of long-covid, and I just continued to try to push through it with the types of exercises I was asking myself to do.   01:11:04:14 - 01:11:20:19 Dr. Sarah Gardner I was still trying to run. I was still trying to weight train and it just wasn't working and I was exhausted. I couldn't recover and then I would take like a week off. I'd be upset with myself. And finally, I think during that little reset between the Christmas and New Year, I was like, You need to stop working against yourself.   01:11:20:19 - 01:11:38:13 Dr. Sarah Gardner Let's try something lower impact to work with my body instead of against it. So I've been doing a lot more Pilates, I'm doing a lot more yoga. And I think when you're coming from that place where you were an athlete or, you know, you used to be more active, it's really hard to be okay with lowering the intensity.   01:11:38:15 - 01:11:58:02 Dr. Sarah Gardner At the same time, I'm really appreciating the benefits of those exercises without exhausting myself. It wasn't realistic to keep asking myself to push through what I was experiencing. I am feeling a lot better now, but I definitely was able to get back into a better rhythm by pulling back a little bit and being realistic about my expectations. That's kind of my point.   01:11:58:02 - 01:12:21:21 Dr. Sarah Gardner There is obviously have goals, but don't set unrealistic expectations for the frequency or intensity of the type of exercise you're choosing. And also feel free to try new things. You're not committing to one form of exercise for the rest of your life. You're not getting less benefit because you're not doing the same thing all the time. In fact, I think you're probably benefiting more from switching it up and you're not going to stick with something you don't like.   01:12:22:01 - 01:12:29:17 Dr. Sarah Gardner If you're finding something isn't the right fit for you. Just know that having fun is the biggest key to consistency with exercise.   01:12:29:19 - 01:12:50:10 Erin Croyle Absolutely. I know it's funny. For me personally, running is this huge stress relief. Like, I just feel better, right? It's not the same when I walk. And so when I was injured so long, I felt it. But also at the same time, there are days you do that mantra where it's like, just go out for 10 minutes. Yeah, I don't.   01:12:50:10 - 01:13:04:06 Erin Croyle I went for a run yesterday and I was miserable. I hated every minute of it. How do we find that divide between something we find joyful and movement and also just making sure we move?   01:13:04:08 - 01:13:17:03 Dr. Sarah Gardner Yeah, I totally get that. And that's one thing that I always kind of tell myself that I also love running and I don't ever want to get to the point where I resent it and don't want to do it. And I think the biggest thing that I've learned is that sometimes I need to step away and I need to take a break.   01:13:17:03 - 01:13:33:04 Dr. Sarah Gardner And when I start to get that itch, like, I really want to go for a run, it's like, where, you know, we're back to a healthier place with it. Now I'm going to start running. If you start to force it, you're going to start to hate it. You don't want to get to that place. And I think that's where you want to explore different types of movement.   01:13:33:07 - 01:13:50:03 Dr. Sarah Gardner Yoga is one of those things that I can do even on those days where I'm like, I don't want to, I don't want to move. I'm tired. I can get down in cash cow and move my body, stretch my legs out in a downward facing dog. Other things you can incorporate or dance, just turn some music on and like be silly for 10 minutes with your kids.   01:13:50:03 - 01:14:13:14 Dr. Sarah Gardner Whatever. Just get your heart rate up, move your body, just make it enjoyable and again, you can switch it up as much as you need to. And then when you start to feel like you want to go back to the forms of exercise that you're most familiar with, that's a good time to transition back in. I also think that there, you know, whether it's spoken or not, coming from a running background, when you're not running, I feel shame and guilt when I'm not running.   01:14:13:14 - 01:14:29:13 Dr. Sarah Gardner And I also feel shame and guilt when I don't want to run. So trying to be aware that those feelings probably come up for some of us and then just, you know, talking ourselves through it like you've nothing to be guilty about. You have a crazy week right now. You will go back to it. You're just taking a day.   01:14:29:13 - 01:14:33:06 Dr. Sarah Gardner You're not quitting the sport. You're taking a day. You know.   01:14:33:08 - 01:14:58:15 Erin Croyle I do. And I'm so glad you said that because I know in my personal experience and then I know a lot of the caregivers in my life where you feel like you're in a rhythm and then your child has to have surgery or someone's sick, or if you're seeing specialist, it's 4 hours in a car one day. Not only are you not doing the exercise, you need to you don't want to drink the water because you're going to have to pee in the car.   01:14:58:17 - 01:15:17:20 Erin Croyle So it just falls apart. And then, you know, we all have our own stuff. For me personally, I have ADHD, which comes with this all or nothing mindset. And so I know some of the things that I do, like if my son's in the hospital or we have to travel for a thing, doctors, I'll take a kettlebell and make sure I keep doing workouts or a yoga mat.   01:15:17:24 - 01:15:33:10 Erin Croyle What are some ways for people who life just gets in the way so often and so often breaks up a routine? What are some simple recommendations you can give to just make sure you stick with some sort of movement?   01:15:33:12 - 01:15:57:13 Dr. Sarah Gardner I think the big thing is, well, it's actually people who end up traveling maybe just keep a set of weights in the car, keep a yoga mat in the car with you obviously don't want to keep plastic water bottles in a hot car, but have some sort of hydration ready to go so that when you do find yourself a pair of running shoes would be another good example, just so that when you do find yourself having a spare hour, which like how nice does that sound?   01:15:57:15 - 01:16:20:06 Dr. Sarah Gardner You're not kicking yourself for not having if you're always leaving. I have like a yoga mat at my office. So if I have a patient that cancels and I can squeeze in some yoga during the day and I don't have to disrupt my kids schedule later, awesome. I'll just try to squeeze it in when I can. But I think being prepared that you might have the opportunity, then when the opportunity arises, you're ready and you can you can actually use that time.   01:16:20:08 - 01:16:35:06 Erin Croyle Yeah. And it's funny because you mentioned shame and guilt and I learned a long time ago to let go of any shame or embarrassment. I feel for like doing a kettlebell workout or doing pushups in a waiting room. Like, I just Yeah, do your squats wherever you do them.   01:16:35:08 - 01:16:36:09 Dr. Sarah Gardner Right? Exactly.   01:16:36:15 - 01:17:02:22 Erin Croyle Yeah. So there are a lot of physical demands that come with caregiving and lifting someone who weighs as much or more than you changing clothes on someone who can't do it themselves. The bathing, I mean the putting on shoes when your back is tweaking, there's gear, there can be wheelchairs. Are there specific movements or routines that caregivers who have these additional physical demands on their bodies should be focusing on?   01:17:02:22 - 01:17:19:00 Erin Croyle And also, you know, for parent caregivers, where our children start to get bigger and stronger as we get older, I mean, I can pick my son up now at 46, but what's that going to look like in my sixties and seventies? What should we specifically be thinking about?   01:17:19:02 - 01:17:42:20 Dr. Sarah Gardner Again, no one system or one exercise is going to be right for everybody. But I do think that the one thing everybody needs to be incorporating, especially people in these roles, are core stability and flexibility. And these are going to be the two biggest players in longevity and injury prevention core. A lot of times people think about ABS, but we're also talking about the transverse abdominals, which helps stabilize their pelvic floor.   01:17:43:01 - 01:18:06:00 Dr. Sarah Gardner We're also talking about our lower back muscles and our pelvis and our glutes, everything that's going to give you a nice, strong foundation so that when you do have to lift someone or something heavy, you have preparedness there and then flexibility. This it's kind of on the same idea. If you have a lot of rigidity in your muscles and you find yourself having to bend in two funky positions, you're far more likely to tweak something or injure yourself.   01:18:06:05 - 01:18:24:04 Dr. Sarah Gardner So I think those are the two main things. And again, there's a lot of different ways to strengthen those areas and to stretch those areas. But as long as you're incorporating some core and some flexibility into the workout of your choice, I think that's going to be really helpful. The other thing I would recommend is working with your child or your elderly relatives.   01:18:24:06 - 01:18:46:03 Dr. Sarah Gardner Occupational therapist, whether it's the in-school occupational therapist or it's somebody that they could point you in the direction of, You can have an occupational therapist sort of coach you on lifting technique and, you know, ergonomically advantageous ways to accomplish the things that you need to accomplish without putting yourself in positions that are going to compromise your health and safety.   01:18:46:07 - 01:19:13:18 Dr. Sarah Gardner And that's true for any profession. I know that when I was in chiropractic school they would really harp on us for the way we needed over the table and the way we used our hands. Because if you enter yourself, you're out of a job right? So your ergonomics can be incredibly important. And then the other thing I would say is, and I think occupational therapists do this as well, some will do at home visits and kind of look at your space and they can help you make recommendations to minimize fall risk for people with mobility issues.   01:19:13:18 - 01:19:31:19 Dr. Sarah Gardner But also look at the arrangement of furniture so that you're minimizing the amount of like bending and twisting you're doing or having the scooch behind equipment when you could have it set up in a way that's maybe not as esthetically pleasing, but a little bit more sustainable in terms of you having to work around a larger child or a larger patient.   01:19:31:21 - 01:19:51:22 Erin Croyle I never thought about that. That's brilliant. It's interesting because I don't think parents think about this, but when you're in early intervention, so children up until age three, a lot of times you do have occupational therapists and physical therapists coming into the home. Yeah, So what a great idea to already consider that when they're younger, when you already have someone.   01:19:51:22 - 01:19:54:23 Erin Croyle I love that you suggested that.   01:19:55:00 - 01:20:15:06 Dr. Sarah Gardner Yeah. And I also think like, you know, the more you practice, if they can look at your lifting technique, the way that you lift somebody has probably changed already. The way you lift. Our love has probably changed already. And so just checking in and making sure that your technique is safe, the more you practice that safe technique, the more second nature it's going to become as you age and as he ages and gets larger.   01:20:15:08 - 01:20:25:23 Dr. Sarah Gardner So it's good to just check in with somebody every once in a while and just like make sure there's nowhere that you could improve or tweak or use a tool or a bolster, just things like that as as things change.   01:20:26:00 - 01:20:42:01 Erin Croyle Yeah, I love that. Let's talk about nutrition. Yeah, We always see headlines about ultra processed foods and preserved foods and all of this. How much of a difference does it really make in what you eat versus how you feel?   01:20:42:03 - 01:21:04:16 Dr. Sarah Gardner my gosh. I think it might be the biggest the biggest tool we have in terms of controlling the way that we feel. That's something that my husband, as you mentioned, was a CrossFit coach, and he and I would talk about some of his client outcomes and even the people who were extremely diligent about their exercises and showed up and did the work, it's when they didn't have their nutrition nailed down that they would fall short of their goals.   01:21:04:21 - 01:21:25:06 Dr. Sarah Gardner And I think it's another paradigm shift. The way that we look at food has to evolve. If we stop viewing it as a way to control and manipulate weight or to punish ourselves and we start considering it as fuel and a way to recover our muscles and to build strength, I think that's when we start to fall into healthier patterns with it.   01:21:25:10 - 01:21:41:14 Dr. Sarah Gardner It takes practice, though, and you know, I come from a disordered eating background. I'm in a way better place with food now, but I think a lot of us do fall into those patterns of like, God, I ate McDonald's on the road. Now I need to punish myself by not eating or by eating a salad or just not getting enough calories the next day.   01:21:41:17 - 01:22:08:02 Dr. Sarah Gardner I think that another thing that people fall into is just not eating when they get busy, which is the worst thing you can do as a care provider because you can't. Or from an ending up. The way that I look at it is focusing on clean, nutrient dense foods that gives you real energy to burn it. When I say real, what I mean is like, okay, so I more often than not, I'm relying on an iced oat milk latte to get me through my morning.   01:22:08:04 - 01:22:32:15 Dr. Sarah Gardner And a lot of times I'm grabbing a scone one of their and don't get me wrong, it's delicious and I will continue to do this. But I do notice that on those mornings my energy steeply drops off by ten. I mean, like it's just not. It's high glycemic index. It's high processed carbs and sugar and it sustains me for 14 seconds and then it's done where if I made a piece of toast, put some peanut butter on it and a banana, is it ideal?   01:22:32:15 - 01:22:50:12 Dr. Sarah Gardner No, but we've got some nice unrefined grains. We've got some peanut butter which has the fat and the protein, and you can use almond butter whatever you want. And then we have the banana, which has fiber. It's got a little bit of natural sugar and it's going to give me energy that might actually last through the morning. And again, it's not we're not looking for perfection.   01:22:50:12 - 01:22:58:13 Dr. Sarah Gardner We're looking for something consistently and we're looking for progress for lunch, for example. I'm not a meal. Are you a meal, Prepper?   01:22:58:17 - 01:23:00:11 Erin Croyle No, I wish I was. I can't do it.   01:23:00:12 - 01:23:12:14 Dr. Sarah Gardner No, I know. Same. That's how I feel too. You know, you see these people on Instagram with these beautiful, like, great little dishes all in a row with their chicken meals for the whole week. I can't do it. I kind of. I like it. I get.   01:23:12:14 - 01:23:12:23 Erin Croyle Sick of.   01:23:12:23 - 01:23:33:19 Dr. Sarah Gardner It. Well, not only do I get sick of it, I'm not going to spend my Sunday doing it. You know, It's like that's it. Downtime is incredibly precious, especially when you have kids or you're caring for somebody. And so I well, I'll tell you what I brought for lunch today. I brought lettuce, meat, turkey, cheese slices and some almond flour crackers.   01:23:33:21 - 01:23:51:18 Dr. Sarah Gardner I didn't put them in like a cute bento box or anything. I put them in a target bag and then I made myself like a poor man charcuterie board for lunch. And it's not pretty, but I didn't have to spend the 10 minutes to make a sandwich, which I'm sorry. I just don't have it in the morning. And maybe you don't either, but I still got my protein.   01:23:51:18 - 01:24:09:12 Dr. Sarah Gardner I still got some dairy and calcium, which has the fat in it as well. I still got a little bit of eggs with the greens and then I got some greens and protein with the almond flour crackers. So I was hitting all my basses. It's better than just like being overly starving when I get home and eating a bag of chips, which I absolutely do.   01:24:09:12 - 01:24:23:13 Dr. Sarah Gardner When I skip the meal. Now I think another really good supplement here would be like a premade protein shake. I'm definitely guilty of buying the powder and then having it sit there because I'm not going to take the 5 seconds to put it in the shaker bottle.   01:24:23:17 - 01:24:32:23 Erin Croyle I'm literally holding on to my protein shake, which I was going to ask because I feel it's part of the Ph.D., it's part of being a mom and a caregiver.   01:24:33:00 - 01:24:33:15 Dr. Sarah Gardner Yes.   01:24:33:15 - 01:24:35:02 Erin Croyle So this is okay.   01:24:35:04 - 01:24:58:17 Dr. Sarah Gardner I think those are your. my God. Yes, absolutely. I do. The pre premade ones. I wish I could say that I was going to sit at my blender every morning and put like fruit and everything in there and make it this beautiful smoothie. I'm not. And while they're a little bit more expensive to buy them ready made, it's more value than if you're just going to have that powder that's going to sit in your closet and go bad and you're not going to use it.   01:24:58:19 - 01:25:24:01 Dr. Sarah Gardner So I think, yeah, supplementing with a protein shake is genius. Have them places, have some in your car, have some at work, just have them in your fridge ready to go. And even when you don't feel like eating, just have one of those. It's better than nothing. Right? It's the same thing as with the exercise. Be realistic about the time that you have to commit to meals and don't go to the grocery store with this fantasy of these beautiful, like three course lunches that you're going to have.   01:25:24:01 - 01:25:30:05 Dr. Sarah Gardner It's not going to happen. Pick things that you can do and stick with it. I think that's the key with nutrition.   01:25:30:07 - 01:25:48:22 Erin Croyle It's refreshing to hear, too, because as a journalist, I'm always reading, you know, we shouldn't eat processed foods, we shouldn't eat lunchmeat. Well, you know, I'd love to grill a bunch of chicken every week to throw on a salad, but I don't have time. So. Right. We're not going to die. Yes. We have lunch meat sometimes, right? We're better off eating now.   01:25:49:00 - 01:26:08:11 Dr. Sarah Gardner You're not going to die. I feel like that's exactly, exactly where another really good one is. Like canned tuna for protein. You can even get little if you're not a person that consumes me. A little nut butter packets, just things like that. There are tofu. There's a lot of options that you have to make. Quick, easy. I can literally put all of this in a bag for the bag in the fridge.   01:26:08:11 - 01:26:11:03 Dr. Sarah Gardner It will work. It doesn't have to be a whole ordeal.   01:26:11:05 - 01:26:36:22 Erin Croyle Yeah, that's refreshing to hear. What about the comfort food factor? Yeah, like you said, a lot of times, if you don't eat, you get home and you just have chips and we all do that. But yeah, how detrimental is that comfort food if you're eating a cookie every day or, you know, we keep hearing about how bad sugar is for us, what is the balance, how do we know what's too much and what's.   01:26:36:24 - 01:26:56:05 Dr. Sarah Gardner You know, like if if every meal that you're eating is like that, if every meal is a cookie or you're skipping meals, that now we have a problem. But I'm a big fan of like little treat culture. I love that. That's career preference right now. It's okay to reward yourself with it. And also, you know, like thinking about food as a reward disordered plot right off the bat.   01:26:56:07 - 01:27:23:14 Dr. Sarah Gardner Like, I recognize it, but it's okay. It's fine. And sometimes you do need a little bit of sugar to give you a bit of a boost because you don't have time to sit down and have a turkey sandwich. You know, I don't think there's anything wrong with that. I think the line is crossed when everything you're eating is processed or everything you're having is high in sugar, or when you get that coffee, it's like a whipped cream, high sugar, like lots of syrupy kind of stuff like that candy bar.   01:27:23:14 - 01:27:23:19 Erin Croyle In a.   01:27:23:19 - 01:27:43:21 Dr. Sarah Gardner Cup. Yeah, exactly. That's the perfect description. But if you're having, like, a latte and have a cookie, it's great. Enjoy. You know, like, I do that every day, it's. But then the rest of my meals, I try to make them at least calorie dense enough that it's going to carry me through. I think portion control is huge, but also having the expectation that you're not you're going to cut out sugar completely.   01:27:43:21 - 01:27:53:08 Dr. Sarah Gardner It's unrealistic when you feel like you're depriving yourself. That's when you're going to crave those things more than if you were to just have a cookie a day. Be like, yeah, I had my sweet thing, I'm good.   01:27:53:10 - 01:28:12:07 Erin Croyle Well, that brings us to hydration. And I think you and I are both guilty of drinking so much coffee that we shake. Okay, I'm not great at water. You are much better at water. Where does water fit into this? How important is it? Do you get enough through food? Should we be chugging a certain amount? Does it really make you feel that much better?   01:28:12:07 - 01:28:12:23 Erin Croyle Tell me about.   01:28:12:23 - 01:28:39:06 Dr. Sarah Gardner Water. Yeah, we definitely need to be drinking water. And like you said, I used to make this joke in graduate school where I was drinking so much coffee, I was no longer peeing. I was considering it excreting at that point because it was just just me, straight myself, past the point of recognition. But yeah, on average I would say you want to shoot for about three liters a day, which are three of those like pulling spring size bottles, which is attainable.   01:28:39:06 - 01:29:02:06 Dr. Sarah Gardner But that's also going to vary depending on, you know, with body size a little bit are you pregnant? Are you nursing? Are you on a medication that's a diuretic and causing you to go to the bathroom more? Everybody is slightly different, but I would say in general, we need to be drinking at least three liters a day. And the reason is because almost every single metabolic process you have in your body requires water to happen.   01:29:02:08 - 01:29:31:10 Dr. Sarah Gardner We're talking digestion, we're talking cell regeneration, muscle building, muscle recovery function. All of it requires water. So when you start to step the water back, you might not notice big symptoms at first, but you're going to experience things like brain fog and maybe your stomach is feeling a little crafty. Or maybe you notice that you are having trouble thermo regulating and all these weird different doctor's office settings that you're having to sit in because you're not sweating appropriately.   01:29:31:10 - 01:29:51:07 Dr. Sarah Gardner Every system has a place where water fits a very important role. So it's it's really not something you can skip on. As much as I would love to drink coffee all day long if I was going to get different food. There are sources of food that contain some water, but unless you're eating like four watermelons a day and even that I don't think is going to cut the mustard.   01:29:51:12 - 01:30:17:08 Dr. Sarah Gardner You definitely need to be drinking it on its own. Then one thing I would add to that is I think considering adding an electrolyte supplement to at least one of your water bottles a day, adding nutrients like magnesium, potassium, sodium is also going to really aid in muscle function and muscle recovery, which when we're talking about the sustainability of our muscles over the years, I think that's really going to help you kind of keep up with the demands that you have on your body.   01:30:17:12 - 01:30:38:00 Dr. Sarah Gardner I really like element. It's LMNT. It's a little higher in the sodium. I love it because I tend towards low, low blood pressure or prostatic hypertension, so I get dizzy when I don't have enough salt. And so for me, that's perfect. I feel like it really gives me a little bit of a boost in it. I have less of that lightheaded, dizzy sensation.   01:30:38:02 - 01:30:46:06 Dr. Sarah Gardner Some people can't tolerate the salt taste for them. I would recommend something like a liquid I.V. It's got all the important stuff in it. It's just a little easier to get down.   01:30:46:08 - 01:30:54:16 Erin Croyle Some people don't like the taste of just plain water, so finding an electrolyte supplement is helpful. What about Bubbly water? Seltzers   01:30:54:21 - 01:31:18:18 Dr. Sarah Gardner Yeah, absolutely. I think there's probably a point of diminishing return that I remember. I am. I can tell that anecdote. My husband will kill me. But I think that I think there's some, if I remember correctly, sometimes carbonation can be a little rough for your decision or your teeth. I think that obviously, like, you know, consuming too much carbonated stuff is going to make you a little bloated and maybe you don't feel super great.   01:31:18:18 - 01:31:37:22 Dr. Sarah Gardner But yeah, add in a little bit of bubbly water just to switch it up a little bit. Try to steer clear of the ones that have added sugar. But other than that, yeah, no, I think seltzer is a great alternative. The big one you want to steer clear of is soda. Unfortunately, also juice, if it's not fresh pressed or if there's added sugar, really not great for you.   01:31:37:24 - 01:31:58:03 Dr. Sarah Gardner Even the juices that you're making yourself are very high in sugar. If you're using that as part of a balanced diet or just a way to get additional nutrients, that's okay. But even sugar from fruit is processed in your body the way sugar is. So try to stay away from beverages that have a lot of added sugars, but you can definitely switch it up with things like seltzer.   01:31:58:03 - 01:32:00:04 Dr. Sarah Gardner I think that's a really good option.   01:32:00:06 - 01:32:20:23 Erin Croyle What about that other stuff that we hear about so often, like those easy fixes? A friend of mine was just swearing by a castor oil wrap that got rid of pain. And I'm like, Ooh, I almost bought it. And then of course, there's all these supplements out there which can be scary if you don't have low levels of some like vitamin B, Should you really be taking it?   01:32:21:00 - 01:32:29:01 Erin Croyle Are there simple things we can do or buy that might make some sort of tangible difference?   01:32:29:03 - 01:32:49:12 Dr. Sarah Gardner Yeah, no, it's so one thing we did talk about in school is that if somebody says they have a system or a product that's going to take away all your issues, they're probably lying. And to really be wary of that sort of thing in terms of the things I take, I take a probiotic, I take collagen and I take an anti depressants.   01:32:49:12 - 01:33:11:14 Dr. Sarah Gardner I'm pretty minimalist with supplementation and medication. And as far as supplements that you can buy at the store, a lot of that like, yes, it is scary that people might be taking things that they don't need, but a lot of them are so poor in quality that you're just peeing without any. So honestly, and I hate to say it as a person who's the this industry, a lot of it's a total waste of money.   01:33:11:15 - 01:33:35:21 Dr. Sarah Gardner You know, I think that if you are able to get stuff from a reputable source and it's been recommended to you because you are deficient, that's one thing that's going to be different for everybody. And I don't think that having a friend who did well with something doesn't necessarily mean that you'll do well with it, too. There are good products out there, but I think it's it's far easier to rely on your nutrition to get a lot of those nutrients.   01:33:35:23 - 01:34:00:14 Dr. Sarah Gardner And that's another good place that protein shakes will fall to because a lot of them do have some micronutrients there that maybe you're missing with your your day to day food, you know, things that I would generally recommend to everybody are heating pad for when you inevitably tweak a sore muscle Epsom salt you can do an Epsom salt soak in emotional support coffee you know I think sometimes that can be a very, very powerful tool.   01:34:00:14 - 01:34:20:15 Dr. Sarah Gardner I love little treat culture, but I don't think that it's worth spending money on these crazy supplements that promise to do these cool things or like castor oil wraps can be really good for an acute knee injury. It's not necessarily something you need to have in your medicine cabinet all the time. I would say save your money and just kind of like revel in that financial security.   01:34:20:19 - 01:34:42:15 Dr. Sarah Gardner Yeah, right. In 2024 or save up. And when the stars align, get yourself a massage. Obviously not realistic all the time, but stick to the things that you know will work for you and don't be looking outside of yourself for the thing that's going to work. You have all the tools. It's just a matter of using them appropriately and actually spending the time in caring for yourself.   01:34:42:17 - 01:35:07:22 Erin Croyle Yeah, And actually, speaking of that, we haven't even talked about chiropractic care. Sure. Achy back, a lot of pains are I'm sure are stress related because the world is on your shoulders. You carry it. Great. How much do you recommend someone go like you're your back doesn't have to go out to see a chiropractor. What sort of things can a chiropractor or you know, not Western medicine do for people?   01:35:07:24 - 01:35:29:04 Dr. Sarah Gardner my gosh, they all sorts of things. At my practice. As you mentioned before, we have chiropractic, we have acupuncture and massage and a lot of what we do is proactive care. So sort of keeping the body in healthy alignment and in pretty good homeostasis so that you're less likely to have a major blowout. And certainly we have people who come in after they've had a big problem too.   01:35:29:04 - 01:35:53:13 Dr. Sarah Gardner But probably the biggest area that I work on are people's pelvic bones or their their pelvic area. And so in chiropractic, we consider the pelvis sort of the foundation for healthy movement, because it's these huge bones that attach to the bottom of your spine, to your hips, right? So when you have a problem with one of those bones, you're going to have big issues and we're going to have a lot of pain and we're going to have limited mobility, etc., etc..   01:35:53:19 - 01:36:11:07 Dr. Sarah Gardner So one of the things I do with every single patient who walks in is I look and make sure that their hips are in alignment so their that one isn't higher than the other and that you have equal movement from side to side and finding little imbalances before they become a problem. And correcting them can really help prevent injury.   01:36:11:07 - 01:36:32:17 Dr. Sarah Gardner When you're doing something like yes, moving somebody, but let's say your child slips and falls, you're not expecting it and you go to catch them. And if you had a little imbalance, that suddenly becomes a huge imbalance and now you're symptomatic. So keeping people's bodies prepared for what they can't be prepared for is a big focus that I have at my office.   01:36:32:19 - 01:36:50:11 Dr. Sarah Gardner But like you said, outside of the demands of caregiving, we all have body demands driving, sitting at a desk, reading, writing, all of these things can cause stress throughout the spine and through the shoulders, through the arms and legs. So basically, when I have a person come in and you can speak to this is, all right, what's going on?   01:36:50:13 - 01:37:06:03 Dr. Sarah Gardner Like, what are we working out today? Is there a particular area of or do we just kind of want to to you up and make sure we're good to go? And that's different for everybody every time. So, yeah, it really depends on the patient's needs. But I would absolutely say you don't have to be injured to come to an office like this.   01:37:06:03 - 01:37:21:04 Dr. Sarah Gardner You can use it as wellness care. It can be a little treat, it can be just a feel good thing, but also use tools like this to make sure that you're able to healthily show up for your loved ones and for yourself rather than waiting until you have a big problem.   01:37:21:06 - 01:37:44:10 Erin Croyle That is exactly what I found is that I see like my stuff is involved, I guess, but not. It's weird. Like I feel healthy, but basically I'm achy all the time, right? I'm 46 here for three kids. I'm caring for a dog that's dying. You know, it's just constant. she can hear you and well, she's losing her hearing.   01:37:44:12 - 01:37:46:09 Dr. Sarah Gardner Okay. Right.   01:37:46:11 - 01:37:46:24 Erin Croyle She's just like.   01:37:47:04 - 01:37:47:10 Dr. Sarah Gardner A.   01:37:47:12 - 01:38:14:08 Erin Croyle The to me, seeing you, seeing a chiropractor is self-care. And those well visits like making sure I get my mammogram and my dental appointments and all those things. You know, when we talk about self-care, it's not about a manicure. It's not about getting Botox. This is about feeling good and living a life where you can actually move and feel good for as long as possible.   01:38:14:10 - 01:38:41:21 Dr. Sarah Gardner Yeah. And yes, absolutely. And I so there was a quote I just remember that kind of pertains to this. And it's pain is not a lifestyle. And I do think that in caregiving positions and I mean just not even just with caregiving like the hustle culture we live in, right? Sometimes we like wear this pain as a badge of honor, like I'm so tough and I'm so resilient and I'm pushing through it and I'm not taking time to take care of myself as if that equates to like toughness and success.   01:38:41:23 - 01:39:16:13 Dr. Sarah Gardner That's a very limiting it's a very limiting way to live your life. It's okay to need help. It's okay to spend money on yourself to get the care that you need. I think again, just the way we're raised, there's guilt with taking time and space for yourself. Yeah, you know what I mean? Yeah. So I think again, just trying to find areas where maybe we have these self-limiting beliefs about what's appropriate to do for ourselves and what's okay and just making more space for you to exist.   01:39:16:15 - 01:39:47:10 Dr. Sarah Gardner You know, you make space for everybody else to exist, the people you're caring for, and then we're the people that get the short end of the stick. Yeah. And it's okay to want to do those things for yourself. And that said, the Botox, the mayonnaise, the whatever, do it. If it makes you feel good, right? What you do, even if it's like silly things, if that brings you joy and it just gives you a little bit of like, okay, I feel like me again, That's totally okay to just make sure you're also doing the foundational things like eating, drinking, moving, sleeping that are going to really debut.   01:39:47:12 - 01:40:05:21 Erin Croyle Yeah. And I find that myself and the caregivers, I know you have to really remind yourself to do those things. It is, yeah, added effort. And unfortunately, sometimes what I have to tell myself to do them is that I am actually doing this for other people because if I don't maintain my health, I can't take care of them.   01:40:05:21 - 01:40:09:04 Erin Croyle And sometimes that's the only logic that works for me.   01:40:09:06 - 01:40:15:00 Dr. Sarah Gardner Sure. Yeah. You know, you can't poor from an empty cup. And if you have to trick yourself into that.   01:40:15:02 - 01:40:15:24 Erin Croyle I think it's.   01:40:15:24 - 01:40:44:11 Dr. Sarah Gardner Okay. I just, you know, with the recognition that I matter to you and yeah it's I do think that we sometimes get really pulled down into our identity as a caregiver. And it's not always voluntary, you know, it just volunteers are the right word. It's not always a conscious decision. It's just your life becomes so wrapped up and involved in these appointments and these meetings and everything that you truly do tend to lose yourself a little bit.   01:40:44:13 - 01:41:04:07 Dr. Sarah Gardner I know that I turn to ultrarunning after I had my son because I wanted to feel like myself again, and it's almost like I had something to prove. I'm not sure to, I guess me that, you know, I still had value. I still had some of those things I had before I had kids because society's really ready to tell you who you are once you become a caregiver.   01:41:04:09 - 01:41:07:18 Dr. Sarah Gardner So it's nice to remind yourself, you know.   01:41:07:20 - 01:41:10:05 Erin Croyle Yeah. And especially as a female, right?   01:41:10:10 - 01:41:12:18 Dr. Sarah Gardner my God, yes. I like that.   01:41:12:18 - 01:41:37:08 Erin Croyle Kind of gender inclusive. But, you know, the primary caregiver, you just fall into this role and sometimes it's like falling on a sword. But it's societal, too. It's really it's interesting And it's interesting. You said I didn't realize you got into the ultra after your son because part of the reason I know that I used to want to train for races is to have that time to myself.   01:41:37:08 - 01:41:38:03 Erin Croyle Like I have.   01:41:38:03 - 01:41:38:18 Dr. Sarah Gardner To. Yeah.   01:41:38:18 - 01:41:46:17 Erin Croyle And to force me to leave. Right. Which to force me to leave because otherwise I would fail at this race. So I had to go and run for 3 hours, right.   01:41:46:19 - 01:42:10:22 Dr. Sarah Gardner Yeah, yeah, yeah. I think a big thing too is just kind of recognizing what your why is and is your why coming from a good place or is it coming from a place of self punishment or some expectation that you had of yourself in the past that maybe is no longer serving you? And I think we kind of touched on that a little bit when I was talking about how, you know, I was trying to force myself to run.   01:42:10:24 - 01:42:27:09 Dr. Sarah Gardner And I had this realization during the race where I was like, I was really struggling. I was having some stomach issues during the race and I was like, why am I doing that? Yes, Yes, I enjoy running. Yes, I enjoy training. But I had COVID. I knew I had COVID when I started the race. I couldn't let go of the fact that I had trained for nine months.   01:42:27:15 - 01:42:43:03 Dr. Sarah Gardner I was like, I'm not not doing this. I have to do it. And then I realized that was it coming from a place of self-love, that was coming from a place of, well, I have to prove that I can still do it. I have to prove that I'm still good enough. Again, I don't know who I was trying to prove it to because everybody was like, You're being stupid.   01:42:43:05 - 01:43:03:15 Dr. Sarah Gardner But that really did make me take pause and think like, why am I doing right? What is my motivation for this? Is it something like undying need to be skinny still? Is it some undying need to like, Well, if I'm if I'm not doing the most, I'm nothing. What is it? Right. So it's like that made me pause and reexamine.   01:43:03:15 - 01:43:24:21 Dr. Sarah Gardner Like, why are you exercising? And if it's to punish yourself, we need to reframe that quickly, because that can very quickly become this, like, toxic relationship with exercise, which is like probably more than we needed to get into with this podcast. But I do think that that's an issue that women struggle with is like, Ah, am I exercising because I want to stay healthy or do I have these voices in the back of my head saying I'm not good enough?   01:43:24:23 - 01:43:33:04 Dr. Sarah Gardner And it just becomes more and more complicated when you have people that you're caring for in the max. It's like hard enough as a single person to mitigate those issues.   01:43:33:04 - 01:43:47:24 Erin Croyle But I'm actually glad you said all that because all the ready, I'm like, All right, we need to do a follow up podcast and just talk about people's expectations. I mean, so much of what I think women do and men are falling into this trap as well is just for appearance. yeah, instead of just for their health.   01:43:48:04 - 01:44:07:05 Erin Croyle But that is another podcast. Yeah, I do have one more question. I think, you know, easy to talk about all this and feel excited and it doesn't sound like it's that hard right to do a couple of minutes here and to just eat clean. Right? But I know when I go home and I actually try to do it it's never is easy as I think it's going to be.   01:44:07:05 - 01:44:26:00 Erin Croyle So what should people do, you know what do you say to people who haven't had a solid night's sleep in literally years because there's a shortages and they can't find a night nurse or people who are always on the go and there's an IEP meeting or a doctor's appointment and then they have to work at night to catch up on their day job.   01:44:26:02 - 01:44:33:00 Erin Croyle What are some basic things to do to stay functional if you can't even find 10 minutes? Like is it standing at your desk? What can we.   01:44:33:00 - 01:44:52:03 Dr. Sarah Gardner Do? I mean, I think the biggest thing is practicing grace with yourself. And it is a practice because it's not easy. I think that we immediately go into that guilt cycle right? But you need to practice as much grace with yourself as you do with the person that you're caring for, not only because you deserve it, but also because it's unrealistic to have any other expectation for yourself.   01:44:52:05 - 01:45:14:04 Dr. Sarah Gardner And one thing I do find really helpful is to Sunday spend 20 minutes looking at all of the appointments I have throughout the week, different meetings, different things at the school, and look for spaces where we can schedule some exercise. Flying by the seat of your pants might seem like a good idea, but realistically, if you don't plan it, especially with kids, something you're caring with, it's going to happen.   01:45:14:06 - 01:45:41:17 Dr. Sarah Gardner So look and set aside that time for yourself so that it's written out on your calendar as one of those things you have to do. That said, if something comes up and you can't do it, it's not the end of the world. Don't punish yourself. See if you can maybe shift it, like move it to a different day, pivot and you don't need to plan meals, but you know, make a plan about what types of foods you're going to bring with you to have ready for you realistic plans, of course, and just kind of commit to that, at least for yourself.   01:45:41:22 - 01:45:58:03 Dr. Sarah Gardner I think the biggest things are going to be rest food and a little bit of movement. And that comes in all shapes and sizes. And one day is better than zero days. Every little bit helps. So even if you have a week where you're not able to do a lot, just have enough respect for yourself to not punish yourself.   01:45:58:05 - 01:46:02:02 Erin Croyle I love it. And then I like I do have one last question.   01:46:02:04 - 01:46:03:01 Dr. Sarah Gardner Sure.   01:46:03:03 - 01:46:24:07 Erin Croyle I'll be putting some stuff in the show notes for folks recommendation like the hydration and whatnot. Yeah, you know, you say movement and you talked about some of the yoga poses. Do you have any recommendations for places where people can find certain poses? So They don't know yoga or they don't know certain moves? yeah, Yeah.   01:46:24:09 - 01:46:45:03 Dr. Sarah Gardner So I love I meant to mention this earlier. There's a lot of apps that you can use so that you can exercise in your bed. You know, you don't actually physically have to get to a gym. I know that's a very limiting factor for me because I just. I cannot find the time. Yeah, I like to do lot of my exercises at home because a limiting factor for me is actually physically getting to a gym.   01:46:45:03 - 01:47:16:07 Dr. Sarah Gardner It's just not going to happen. The app that I love the absolute most is a slow moves and I can send you that link, Erin so you can put it in the show notes. I want to say that the price is about $200 for the year, which if you think about a monthly membership, like it kind of hurts upfront, but you'd be paying ten times that much for some gyms and they have Pilates bar, yoga, hip classes, interval classes like cycling suggestions and running suggestions.   01:47:16:12 - 01:47:36:08 Dr. Sarah Gardner They have everything. And I know there's a lot of apps out there like that, like the Peloton app has some great classes, look online and see if you can't find some studio style classes that you can do from anywhere. I think that's a hugely helpful tool and it's one of those things from COVID that I'm so glad it came about.   01:47:36:08 - 01:47:42:12 Dr. Sarah Gardner Right. It's just everything is a lot more accessible from anywhere. Yeah. Yes. Is, is just super important.   01:47:42:14 - 01:47:48:13 Erin Croyle Yeah. And I do know to for folks on a budget where 200 bucks is like too much.   01:47:48:15 - 01:48:12:01 Dr. Sarah Gardner YouTube YouTube that YouTube. yeah. Big time. So much There's so much out there that said there's some crap there. Yeah, so be it. Be a intelligent consumer but yeah I think there's a I've done 50 videos off of YouTube and been totally satisfied with all of them. So yeah, you can very much find cost effective ways to get those classes.   01:48:12:03 - 01:48:17:03 Erin Croyle Yeah. And like you said before, if you hate it, then stop it and find you like it.   01:48:17:04 - 01:48:27:04 Dr. Sarah Gardner Like totally, you know, and there's probably stuff we haven't even mentioned out there, you know, like there's literally something for everybody by, you know, cosmic kids, yoga.   01:48:27:06 - 01:48:28:07 Erin Croyle I've heard of it.   01:48:28:09 - 01:49:01:04 Dr. Sarah Gardner It's it's I'm not going to call her insufferable on air. If this woman who does themed yoga classes for children where you're like, going through these yoga poses and she's she's narrating get to the story of Frozen so she'll rename a pose to hold the interest of the child. And there's classes like that for adults, too, where if you're super into, you know, this is a weird example, but like the people who do like live action roleplaying like their yoga class incorporate things like that to keep it interesting for you.   01:49:01:06 - 01:49:07:13 Dr. Sarah Gardner So just because you haven't found a thing that you love yet doesn't mean it's not out there. Just keep looking. Because there is. There's a lot of good fits.   01:49:07:15 - 01:49:13:06 Erin Croyle That's hilarious. I'm like thinking like, my kids would marvel. I bet there's some marvel weird cosmic you dress.   01:49:13:08 - 01:49:22:08 Dr. Sarah Gardner So there's like, yeah, yeah. There's like, I know the Cosmic kids Lady has like a Lego movie. Yoga. Like to have everything. Deb Everything.   01:49:22:14 - 01:49:23:04 Erin Croyle my gosh.   01:49:23:04 - 01:49:24:21 Dr. Sarah Gardner That's yeah, good to know.   01:49:24:21 - 01:49:30:12 Erin Croyle I guess they got a lot of parents listening and yeah, annoying for grown ups, but great for kids.   01:49:30:15 - 01:49:34:19 Dr. Sarah Gardner Yes, but it occupies them for 20 minutes at a time, which is beautiful.   01:49:34:21 - 01:49:36:20 Erin Croyle And hopefully they're moving and not just what.   01:49:36:20 - 01:49:39:13 Dr. Sarah Gardner Exactly, Exactly.   01:49:39:15 - 01:49:44:09 Erin Croyle my gosh, I cannot thank you enough. Is there anything else that we didn't touch on that you want to talk about?   01:49:44:11 - 01:49:48:16 Dr. Sarah Gardner No, I don't think so. This is really fun. Thanks for having me on the chat.   01:49:48:18 - 01:49:50:12 Erin Croyle Are you kidding? We'll have to do it again.   01:49:50:14 - 01:49:57:20 Dr. Sarah Gardner Yeah, definitely.   01:49:57:22 - 01:50:20:23 Erin Croyle And thank you listeners for joining us. We're so excited for what's ahead for season two. Some topics we're going to cover in the coming months. The complexity of proper nutrition for children with disabilities, searching for meaningful employment and so much more. Please rate review and share this podcast of ours and tell us what you want to hear about.   01:50:21:00 - 01:50:27:12 Erin Croyle This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.        

This odyssey of parenting, caregiving, and disability can be so many things: isolating, overwhelming, joyous, lonely, full, exhausting, exhilerating. The extreme ups and downs; the highs and lows. You can't fully understand it unless you live it.  This episode explores why professional family to family support is so critical - so peers with lived experience can give us the information and empathy we so desperately need. We also celebrate the many accomplishments of our Center for Family Involvement staff, and share how their work is changing lives.  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES:  Nickie Brandenburger is the Director of the CFI's Family to Family Network.  More about I'm Determined. Interview with I'm Determined founding member Dr. John McNaught.  More about the sibling perspective.  Lisa Richard is the CFI's Regional Network Coordinator for Southwest Virginia. She is also the Rural Outreach Specialist.  Lisa is also a part of the Genetic Navigator Program.  More about Carilion which Lisa mentioned.   River's Way is the community organization that Lisa's children find benificial. Lisa was a guest on the podcast back in May, sharing her experiences as a parent, advocate, and person.   Jen Reese is the Regional Network Coordinator for Northern Virginia and part of the Genetic Navigator Program.  The STXBP1 Disorders website features the lattest on the condition as well as the FDA recording that Jen participated in. A podcast on the diagnostic odyssey one mother faced for her child's rare genetic condition.   Parenting Special Needs feature on transitioning to the empty nest.  Mauretta, Edgar, Lisa, and Patrice are all part of the CFI's Cultural Broker Initiative Elderhood and Aging Families.      TRANSCRIPT:   01:00:07:21 - 01:00:37:14 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. I joined the club, so to speak, when my first child was born with Down's Syndrome in 2010. Arlo didn't just make me a parent. He transformed me into an advocate for all people with disabilities.   01:00:37:20 - 01:01:05:11 Erin Croyle He was also the catalyst for a major career shift. I joined the Center for Family Involvement at VCU's, Partnership for People with Disabilities, a few years after he was born. Utilizing my journalism and television producer background as a communications specialist, it's some of the most meaningful work I've ever done because we provide emotional and informational support to people with disabilities and their families.   01:01:05:13 - 01:01:36:22 Erin Croyle People like me, my husband Arlo, and his amazing, gorgeous, younger siblings. I know how important this kind of support is because even though I provide it, I need it too, because I'll never forget how devastated and lost I was sitting next to my son while he was in the Negro. Because I'll forever be on this roller coaster of medical mysteries, decoding behaviors, waves of grief, caregiving, fighting, embolism, advocacy and all of the things.   01:01:36:24 - 01:02:03:05 Erin Croyle The beauty of the Center for Family Involvement is that every staff member and volunteer gets this because they live it too. Everyone at the CFI has a loved one with a disability. At the same time, we're rich in diversity, culturally, socioeconomically, generationally, education really and so much more, including the many disabilities, were not eligible for our final podcast of 2023.   01:02:03:07 - 01:02:29:08 Erin Croyle We're celebrating the Center for Family involvement by sharing what exactly it is we do all day, why we do what we do, and why this work is so important. We start with the director of the CFI Family two Family Network, Nickie Brandenburger. Nickie, I'm so glad you're here. You came to CFI in 2015 after working as a service coordinator for nearly two decades.   01:02:29:10 - 01:02:38:19 Erin Croyle Can you tell us how you ended up with the Center for Family Involvement and how your professional and lived experiences have informed your work?   01:02:38:21 - 01:03:02:11 Nickie Brandenburger So I am a special education teacher by trade. I went to college with the intent to be a special ed teacher end of my college career. I was having a difficult time thinking about being within the four walls of a classroom. I was really fascinated and couldn't stop thinking about what was happening when that child got off the school bus.   01:03:02:11 - 01:03:33:22 Nickie Brandenburger At the end of the day and went home. What was their family life situation like? Who were those other people that were involved in their life? What happened after graduation? During the summer, when school sessions not end, I could not stop thinking about life outside of the school system for families that are raising children with disabilities. So I sort of shifted gears and got a job right out of school at 22, working with a community services board in Lynchburg, Virginia, providing what's called support coordination.   01:03:33:23 - 01:04:04:14 Nickie Brandenburger Back then, the phrase was case management, basically providing support to families of children and adults with developmental disabilities. So I did that for about 21 years. Was exposed to so many different types of families, different dynamics. And it was I love the work. About 11 years into the work, I became a mother and I had my son Thomas, in 2005 and perfectly normal pregnancy and delivery.   01:04:04:14 - 01:04:31:02 Nickie Brandenburger But around three months we started to notice, you know, something was a little off and he was having difficulty feeding and eating. He started to he stopped gaining weight. And I can remember taking him to the pediatrician because he was refusing to nurse and wasn't sleeping well. And something was off. And I remember looking over the physician shoulder to the notes that he was writing, and I saw the term failure to thrive.   01:04:31:02 - 01:04:51:17 Nickie Brandenburger And I thought, my gosh, what does this mean? So that kind of began us trying to find diagnosis and what exactly was happening with him and with Thomas. It was hard. You can't really label it with one thing. There were a lot of little things that kind of combined made things more difficult for him. Around 18 months, he really didn't have language.   01:04:51:19 - 01:05:16:15 Nickie Brandenburger He would go from 0 to 10 really quickly, biting, difficulty sleeping. So we were assessed by our local community Services Board in Henrico County, and he qualified for early intervention. They determined that he had some sensory processing issues and just a global greater than 25% delay. And that's sort of kind of how you begin to access early intervention services.   01:05:16:15 - 01:05:38:11 Nickie Brandenburger And at the time, you know, I was very overwhelmed and I can definitely remember being confused about what my next steps were. But I was pretty tough on myself in that I was suddenly accessing services from a service delivery system that I'd been a part of for 11 years. And suddenly I was wearing this parent hat and it was very uncomfortable for me.   01:05:38:12 - 01:06:00:20 Nickie Brandenburger You know, there were professionals that were trying to support us in our early intervention journey with our son that knew me, you know, as a professional. And suddenly I was a parent, too. And I didn't know how to handle that and process it at the time. So, you know, now that my son is 18, I can look back and acknowledge and say that there was definitely a little bit of shame and maybe some embarrassment.   01:06:00:20 - 01:06:23:11 Nickie Brandenburger And I didn't know how to articulate that. So that probably resulted in making it harder for myself than it really had to be, because I was trying to process exactly what was happening. And I think there's something to be said about parents if you're blissfully clueless about disabilities. But I knew enough to make it a little scary, so that was pretty tough for us.   01:06:23:11 - 01:06:48:16 Nickie Brandenburger So I had great support from friends and family. My husband and I benefit from having family members that are in the field. My husband is a public school educator. His sister is a special education teacher. My mother in law's occupational therapist, father in law is a physical therapist. My brother's wife is a special ed teacher and has a brother with Down's syndrome, you know.   01:06:48:18 - 01:07:05:10 Nickie Brandenburger So we had all of these family members and professionals kind of around us that knew. So there was a lot of support, but I was definitely hard on myself. So fast forward to, you know, 2015 and I was actually when I found out about the job at the Center for Family Involvement, I wasn't looking for a job change.   01:07:05:11 - 01:07:25:06 Nickie Brandenburger I was happy where I was, but I was trying to find resources for a family that I was supporting and I was trying to find some resources for them, Other parents that had children with disabilities that were also Latino. And so I kind of came across the website. I knew about the Partnership for People with Disabilities. I didn't know specifically about the Center for Family involvement.   01:07:25:08 - 01:07:58:12 Nickie Brandenburger So I kind of fell upon the website and saw I notice about a job position and I read the job description and the director for family, the Family Services, and I thought, my gosh, I could do this. This is a perfect way to sort of marry my two very specific experiences. Being a professional in the field and supporting so many families over the years that had children with disabilities and then suddenly being a parent, accessing supports and advocating for my son and I could marry those two together into one.   01:07:58:12 - 01:08:00:14 Nickie Brandenburger And so I applied and I got the job.   01:08:00:16 - 01:08:27:06 Jen Reese I find it so strange that we've worked together for so long, and I didn't know the many details of what I like to call origin story. I can't help but think because of all the families we help and we talked to after you had your son. How did that change your perspective of the work you did in your CSB?   01:08:27:07 - 01:08:51:16 Jen Reese Because I know that for me and so many other parents, it seems these are great. Everyone in early intervention was was great, but they also didn't have all the information that you need because it's just not part of their scope of work. And so here you are on the tightrope of both. So how did your perspective change?   01:08:51:18 - 01:09:22:20 Nickie Brandenburger That's a really good question. So the first couple of years, because I can admit now that there was some embarrassment and shame and I was still processing all of it. I don't know if it affected me that much, but eventually I do think it helped me to be so much more empathetic to what families were going through. I could stand in their shoes for a bit right, if you will, when I would attend IEP meetings for families to help support them, and the mothers would get emotional talking about the needs their children have.   01:09:22:22 - 01:09:42:16 Nickie Brandenburger I would get emotional with them because I could relate so much, but I have this story, so I think my son was probably about six or seven. It was just before I came to CFI and I was working with a family, a mother who had a son with Down syndrome. And at the time her son was probably three or four and we had become really close.   01:09:42:16 - 01:10:04:03 Nickie Brandenburger This mom and I and I would visit them every three months and, you know, and get to know her son and advocate for them. And one day we were having this conversation and I had felt comfortable enough telling this mother that I had a child that was accessing early intervention services and struggling in school. And at that point, I believe he was having a lot of medical issues and we had just begun his five of four.   01:10:04:08 - 01:10:24:19 Nickie Brandenburger And so I was sort of I felt comfortable in telling this mom kind of what was going on with me personally. And so she was sitting and listening. You know, this is a mom again, I had been giving professional support to for many years. So she's listening and she's nodding as I'm telling the story of, you know, trying to wrap supports around him and managing all of these appointments and this and that.   01:10:24:21 - 01:10:45:24 Nickie Brandenburger And she kind of got a little smirk on her face and she paused for a second. She said, Nickie can I give you a little bit of advice? And I said, Sure, why I'm telling you. And she said, Stay in your lane. And I at first I thought, What in the world does she mean? Stay my lane? And she kind of laughed and she said, You know, you have been a fantastic support coordinator for our family.   01:10:46:01 - 01:11:06:00 Nickie Brandenburger We have really benefited from your knowledge and your resources. And I think, you know, I'm so appreciative of it. But you are also Thomas mom. And I think sometimes it's easy to get into being a case manager or support coordinator for your son. And it's important because you do have a lot to manage, she said. But stay in your lane, stay in your mom.   01:11:06:00 - 01:11:43:11 Nickie Brandenburger LANE And that's what she meant by that. And I was actually speech less, but in a good way because she was right. I really needed to learn to balance it better. The universe sort of gives you what you need at the time you need it. And that incident was probably about a year before I came to CFI. But that really that moment was really pivotal for me in terms of being able to marry those two things together, being a parent and advocating and understanding the challenges, but also supporting other parents and working with professionals so that that's really when it pivoted.   01:11:43:13 - 01:12:13:21 Jen Reese That is a really good example of what we deal with at the Center for Family Involvement all the time. And I think about how sometimes it's not possible to stay in your lane because when we have to deal with the IEP process or getting second opinions and really going up against what a doctor tells you, because in your bones, you know that it's wrong and these things are hard and.   01:12:13:23 - 01:12:14:10 Nickie Brandenburger Sometimes you.   01:12:14:10 - 01:12:34:12 Jen Reese Want to stay in your lane, but you can't. With the CVI, as we know how to help people kind of do that. And that's why we're so passionate about the work that we do. So can you give some examples of some of the work we've done where we have helped families in this way to kind of figure out how to navigate this road?   01:12:34:12 - 01:12:43:03 Jen Reese Because it's hard and there aren't that many of us who have children with disabilities. It's just such a different world.   01:12:43:08 - 01:13:14:06 Nickie Brandenburger And I think that's one of the things that's unique about the Center for Family involvement. And, you know, our staff that are spread throughout the state of Virginia and our network of what we call family navigators, which are parents and family members and caregivers that have loved ones with disabilities. And they're spread throughout the state of Virginia. So our network has, you know, 40 plus volunteers and then 20 odd staff who all have very different experiences, you know, very different cultural backgrounds.   01:13:14:08 - 01:13:33:04 Nickie Brandenburger Some of us were born in a country outside of the U.S. Some of us were in military families, and we had that transient sort of lifestyle and childhood. Some of us live in rural communities with very few resources or limited resources, and some of us live in cities where we're almost overwhelmed with resources. And there's everything in between.   01:13:33:06 - 01:14:03:19 Nickie Brandenburger We have children of all ages with all different types of disabilities, but the one common denominator that we all have at the Center for Family Involvement is we have someone we love very dearly that has a disability or some sort of special health care need the magic in the work that we do, the family to family, parent to parent support is that when you can connect with that person, that has reached out looking for help, when you can connect with that parent and say, me too.   01:14:03:21 - 01:14:32:24 Nickie Brandenburger There's a magic that happens and sometimes you'll feel a little goose bumps on your skin. You feel that connection when you can share a story and it helps another parent feel validated in how they're feeling, what they're experiencing. Because you say, Yeah, me too. Been there, done that. And it helps even more when the person you're talking to looks like you maybe is from the same cultural background is you lives in the same community.   01:14:33:01 - 01:14:53:03 Nickie Brandenburger And that is also unique, I think, to the Center for Family involvement because we tried to ensure that when a family calls us and asks to be matched with another parent that we have taken into account a lot of different things, we want that match to be, you know, for there to be some perceived sameness among those two parents.   01:14:53:03 - 01:15:15:06 Nickie Brandenburger And sometimes that perceived sameness is the diagnosis that the child, if you've got a child with a really unique, rare genetic disorder and you find another parent that has that exact same rare genetic disorder, that's the perceived sameness and the connection, sometimes it's cultural background. You know, your children may have a very different diagnosis, but if you both are from South America, that's that connection.   01:15:15:06 - 01:15:34:02 Nickie Brandenburger You know, you speak the same language. And I think that that is one of the driving forces behind the work that we do. And I think because we also at the Virginia Center for Family Involvement have connections with partners outside of Virginia. And so we also have a unique opportunity to be able to match and support parents outside of the state.   01:15:34:04 - 01:15:55:02 Nickie Brandenburger You know, we have these other network sister organizations that also do parent to parent, family to family support throughout the United States. And we can reach out to each other and say, hey, I've got this family. This is what they're dealing with. This is the dynamic. And you can send that out to all of the other state organizations and match.   01:15:55:02 - 01:16:17:14 Nickie Brandenburger And I've supported parents in Texas and South Carolina. We've supported parents in Alaska. That model of support, which really kind of started a long time ago, the parent to parent model started, I think, in the seventies with parents sitting around a kitchen table saying, hey, you know, we we have lived experience that should count for something, lived experience should equate to some sort of professional experience.   01:16:17:14 - 01:16:46:05 Nickie Brandenburger And I think that that is also at the the basis of what we do at the Center for Family involvement, because, yes, we're parents, but we've been accessing those services and resources for our family members. So we have knowledge which equates to professional experience. And so it's all about where in those two hats. And I think another thing that we do is we're able to coach parents that haven't had an opportunity to learn how to be a collaborative advocate.   01:16:46:08 - 01:17:03:01 Nickie Brandenburger It's it doesn't come naturally to parents. This child is born to you. You're you love them. You want what's best for them. But there's a period of grief. I think, that every parent goes through like I did with my own son, a period of denial and grief of what is in front of you with raising this child with a disability.   01:17:03:01 - 01:17:31:11 Nickie Brandenburger And that takes a while sometimes for parents to get through that. And they may not have the resources around them to help them cope with that. I have lots of resources around me and I still struggle, right? And so I love the opportunity to be able to work with a parent that needs that kind of coaching and mentor and they need someone to one, validate what they've experienced and not shame them or immediately start pointing them in the direction, say, call this person, do this.   01:17:31:11 - 01:17:52:15 Nickie Brandenburger And you know, some families aren't able to take in information from you about resources they can tap into because they're still processing their emotions. So you got to sometimes have to step back and slow down. And the first line of support is just shut up and listen. Just listen to their story. You can take notes, but hear them out first.   01:17:52:15 - 01:18:12:24 Nickie Brandenburger Don't immediately start diving in to provide support and resources. I think there's a lot of organizations out there that do that. That's what I did as a support coordinator. My job was to immediately lengthen to services, right? But I didn't have that emotional connection with them before I became a parent. I might have been a really good support coordinator and I could say, have you tried this resource?   01:18:12:24 - 01:18:37:21 Nickie Brandenburger And, you know, I'd been in the field long enough. I knew a lot, but I certainly didn't know what it was like to be a parent. But I think that's definitely something at the Center for Family Involvement that makes us really unique from some of the other parent organizations that we really do try to focus on that emotional support using active listening skills and motivational interviewing techniques to try to get at what's behind the emotion.   01:18:38:01 - 01:19:02:15 Nickie Brandenburger Something like anger. When you're working with a parent that's angry or frustrated, there's something behind that, that emotion of anger and frustration. Usually it's fear or sadness. And so when you can get to that, sometimes it can break down those walls so that that parent can process those emotions, acknowledge it, realize it's validated emotion, and then move on to a place where they're willing to accept help and resources.   01:19:02:17 - 01:19:09:06 Nickie Brandenburger That doesn't come to everybody naturally. Sometimes they need to be taught that or somebody needs to mentor them.   01:19:09:08 - 01:19:32:13 Jen Reese I think something that is also important before we have to wrap is we talk about family to family support and we match families with people with similar needs. But it's not just it's so much more than what you think of just sitting and chatting in a coffee shop because the people with Center for Family Involvement, the staff and the volunteers, they have training.   01:19:32:16 - 01:20:06:05 Jen Reese This is family engagement, but this is intentional and informed engagement. And so it's a little bit different than just joining a group on Facebook and chatting there. So often I see a group of well-meaning people get together and it is just a lot of letting things out. But there's no movement forward, there's no solutions based ideas, and I feel like the work that we do, you can let it all out, but then you can also offer solutions and ways to deal with what you're going through.   01:20:06:07 - 01:20:09:01 Erin Croyle You're doing the training. Nickie  What do you see?   01:20:09:03 - 01:20:27:06 Nickie Brandenburger It is so important when you're providing support to a parent and they're asking for resources. It needs to be unbiased information. I do think that there are some organizations and support networks out there that are great about when a parent wants to have a place to vent their frustration. You know, that may be the intent of a certain group, and that's okay.   01:20:27:11 - 01:20:44:18 Nickie Brandenburger But, you know, to move past that to make progress, you need to kind of know what resources are available. And I can get a little frustrated sometimes with some of the like, for example, social media groups where, you know, you can go out there and put a comment or ask a question about your child and you're going to get an opinion whether you like it or not.   01:20:44:18 - 01:21:07:22 Nickie Brandenburger But there's a lot of like if you put the information out there, someone is going to say something. And just because one parent may have had a bad experience with an organization doesn't mean that you will. And so I think one thing we really emphasize in our training with staff and volunteers is the information and resources that we share and needs to be unbiased, because what works for one family may not work for another, but they need to at least know what's available.   01:21:07:22 - 01:21:25:00 Nickie Brandenburger And I think there is a little too much bias sometimes, and that's very confusing for a family and it can really lead them down. You know, the wrong path. If somebody is saying, don't do that, that's a terrible option for you, how do you know it might have not worked out for your family, but it can for somebody else's.   01:21:25:00 - 01:21:47:15 Nickie Brandenburger And we really are very careful about that because I think, like I said, it can be very overwhelming for a family if they are led down a path that doesn't get them anywhere or even led down or encouraged to be volatile and collaborative. If you're supporting a parent and you're encouraging them, let's go into that IEP and and we're going to really let them have it in the end.   01:21:47:15 - 01:22:11:19 Nickie Brandenburger I just don't think that is very effective for everybody. Especially educators are stressed and overwhelmed these days. They have a lot going on. And so to kind of come in at that, the whole system is against my child. That can be really a tough situation that doesn't really get you in the end what you're looking for. And so really trying to encourage collaboration and sitting back and taking all the information in and making an informed choice.   01:22:11:19 - 01:22:25:10 Nickie Brandenburger So when you offer that information in an unbiased way, it does allow that parent to take a step back and process it and then make an informed choice. And I think that that is a really important part of our work for sure.   01:22:25:12 - 01:22:29:13 Erin Croyle Absolutely. And I think something that it even helps me.   01:22:29:15 - 01:22:31:04 Nickie Brandenburger Is.   01:22:31:06 - 01:22:55:01 Erin Croyle The honesty that we share when we talk about this is I look at our colleagues, I look at Dana Yarborough, I look at everyone when we talk about IEP meetings. We know how to help families do it. But we will go ahead and tell you, like I can say, I cry at almost every IEP meeting. I just get emotionally because it's your child, it's your heart sitting there on the table.   01:22:55:01 - 01:23:22:07 Erin Croyle So we know that it's easy to say how to do things and and whatnot, but we also know how hard it all is and will help validate that. So you don't feel I mean, you know how sometimes you feel crazy? I mean, literally and I but she's our mental health specialist. I'm sorry. I know we're not supposed to use that word, but I mean that literally it's the hardest job in the world, parenting.   01:23:22:09 - 01:23:45:22 Erin Croyle And so to have parents in a similar experience who also have training, too, to guide you is such a rare thing to be able to offer. And, Nickie, I know you have to go. I have one last two part question. Okay. I'm looking at the work that we've done in 2023. I'd love to know a couple of things that you're most proud of, and I want to know what you're excited about.   01:23:45:24 - 01:23:47:13 Erin Croyle For 2024.   01:23:47:15 - 01:24:07:22 Nickie Brandenburger I love so much about my job, but one of my most favorite projects is working on the I'm Determined State team, which is sponsored by the Virginia Department of Education. But it really is a wonderful program that really encourages self determination among students with disabilities. And there is an element of, you know, how can youth learn how to become more self-determined?   01:24:08:00 - 01:24:38:21 Nickie Brandenburger How can the parents support their youth to be more self-determined? And how can educators support the students and parents self-determined? So it's a beautiful, like triangular relationship. And I've had such a wonderful experience over this past year working on that project, because not only at my supporting parents, but I'm actually able to to work directly with youth and these wonderful youth leaders, youth that have disabilities that are learning how to be leaders around the state, to support other youth with disabilities to become more self-determined.   01:24:38:21 - 01:25:05:00 Nickie Brandenburger And we've had great opportunities to work with special educators. I just came off of a conference last week, the Undetermined Aspire Symposium. We had just over 100 specialized teachers from all over Virginia attend. I was able to lead a session with. I had to Co-presenters one is a former youth leader, a young woman who has a disability and received special education services, and now she's actually a paraprofessional working in the school system.   01:25:05:00 - 01:25:27:22 Nickie Brandenburger So she was sharing her perspective as a former youth leader and a current paraprofessional and using, I'm determined, tools to support children to be more self determined. My other colleague is with James Madison University, the training and technical assistance there and she's got just argued for her dissertation in August and now has her doctorate in education. And she was there giving her perspective as a special educator.   01:25:27:24 - 01:25:44:14 Nickie Brandenburger And I had a chance to give my perspective as a parent on how we supported our son with Self-determine the Nation and identifying what his strengths and needs were. And it was just such a great opportunity to be able to be with teachers and youth leaders and parents all together so that I'd just really enjoyed that project this year.   01:25:44:14 - 01:25:49:02 Nickie Brandenburger And we've done some really wonderful things. And again, next year I think we've got some even better things planned.   01:25:49:02 - 01:25:55:12 Erin Croyle So I love that you brought up youth and the future, and I just.   01:25:55:14 - 01:25:56:01 Erin Croyle Have to.   01:25:56:01 - 01:26:13:04 Erin Croyle Add the self-determination is so important. We actually also do work with siblings and talk a lot about supporting siblings. And some of the wisdom I hear from, you know, the siblings and the self advocates. I mean, I it gives me so much hope for our future.   01:26:13:06 - 01:26:32:11 Nickie Brandenburger Yeah. You know, and I think, you know, the reason why I've probably been so excited this year about that work because I have an opportunity to work so much closer with the youth leaders on that project is that my son just transitioned from high school and he is now a freshman in college. You know, 18 years ago, if you'd told me that we'd be here, I don't know if I would have believed it.   01:26:32:13 - 01:26:53:11 Nickie Brandenburger And so because we went through that transition with him and he's doing really well, you know, all of that work the last eight years to support him has paid off. And I see all these fantastic youth leaders doing the work now and connecting with other kids around the state of Virginia and encouraging them to be self-determined and speak up for themselves and has their own motivation.   01:26:53:11 - 01:26:57:20 Nickie Brandenburger So it benefits everybody, really. But yeah, it's one of my favorite projects.   01:26:57:22 - 01:27:07:24 Erin Croyle Yeah. And I'll put a link to Undetermined in the show notes. And we also interviewed one of undetermined founders, John McNaught, earlier this year. I'll put the link to that in the show notes as well.   01:27:08:01 - 01:27:15:19 Nickie Brandenburger Thank you so much for having me. I absolutely love talking and bragging a little bit about our work, so I've really enjoyed our conversation. I could talk to you forever, I think.   01:27:15:19 - 01:27:19:00 Erin Croyle Erin, Same. And we'll do this again.   01:27:19:02 - 01:27:44:04 Erin Croyle As Nickie mentioned, we have family navigators all across Virginia and connections across the country. We know how different our lives are based on where we live. For families in rural areas, getting the care and services you need can be complicated. That's why we have a rural outreach specialist. Her name is Lisa Richard and she dropped in for the best of 2023 podcast as well.   01:27:44:06 - 01:27:59:19 Erin Croyle Lisa, I spoke to you earlier in 2023 about Mother's Day for that special kind of talking about how different the experience is for us having children with disabilities. Lisa, Can we start, though, for a refresher? Can you tell folks a little bit about yourself?   01:27:59:21 - 01:28:21:15 Lisa Richard Yeah, sure. Erin. My name is Lisa Richard, and I work at the Center for Family Involvement. I currently cover Southwest Virginia, but first and foremost, I'm always a parent. My oldest daughter, Zoe, has Down syndrome, and we have a rather large family. If you remember from the podcast in May, I have seven kids and my fourth child is adopted.   01:28:21:15 - 01:28:31:06 Lisa Richard His name's Camden. He also has Down's syndrome and I just really enjoy working at the partnership and supporting families and caregivers.   01:28:31:08 - 01:28:55:07 Erin Croyle Yeah, same. I never expected to like a job so much because it just relates so much to our life. Can you tell me and those listening a little bit more about the specific work that you do for the partnership? We have people across the Center for Family Involvement that just work with demographics that don't have enough attention, and that rural component is huge.   01:28:55:07 - 01:28:59:11 Erin Croyle So fill us in on on your your work.   01:28:59:13 - 01:29:29:03 Lisa Richard Yeah, sure, Erin You know, it's been a really fulfilling part of what I do because when I was asked by Nickie and Dana a while back now a few years ago if I would be interested in the rural outreach position, I never realized like how much of it actually means to me or how much the difference between trying to receive support and help and raise a child or family or live with a family member that has a disability.   01:29:29:03 - 01:30:04:08 Lisa Richard The difference in being in a rural community and just the cultural part of that, the transportation part of that, the information and lack of information or misinformation part of that. And it's become a really rewarding part of what I do because I also live in a rural community and I've lived in many rural communities and just recognizing I just had a conversation with someone this morning and I my daughter needed some medical attention and I'm going to have to drive one hour away to get that for her.   01:30:04:08 - 01:30:40:13 Lisa Richard And just like how you have to reorganize your day, your work, your time, your efforts and in trying to do those things that I'm not saying it's not difficult in areas that are more suburban or urban. It's just a different type of support that's needed in rural communities. And so I have really sort of grown this outreach program and one of the great things that happened is that I was able to partner with Carilion, and Carilion now sends me and refers lots of families that live and we are really rural and remote parts of southwest Virginia that I'm able to support and help.   01:30:40:13 - 01:30:46:00 Lisa Richard And that's been an amazing part of what I've been able to do these last couple of years.   01:30:46:02 - 01:30:47:23 Erin Croyle And what is Carilion?   01:30:48:00 - 01:31:09:16 Lisa Richard So Carilion is a medical center in Roanoke, Virginia, and I was able to connect with an education consultant. I had done a presentation with Nickie and Rebecca a few years back, and she eventually just reached back out to me and said, you know, I have a family that I'm worried about. Would you possibly be able to support them?   01:31:09:16 - 01:31:27:17 Lisa Richard If you can tell me a little bit more about what you do? And I'm like, This is exactly what I do. I'd be happy. And that has since grown. Now I work with the educational consultant, I work with the social worker, I work with the primary care physician, I work with the nurse practitioner, and they send referrals to me consistently every week.   01:31:27:21 - 01:31:36:08 Lisa Richard Different families that they've worked with that they thought would benefit from help to see if I just navigating systems or providing emotional support to them.   01:31:36:10 - 01:31:38:24 Erin Croyle Thanks, Lisa, and I'll be sure to put some more.   01:31:38:24 - 01:31:39:21 Erin Croyle Information about.   01:31:39:21 - 01:31:41:09 Erin Croyle Carelon in the show notes.   01:31:41:09 - 01:31:43:03 Erin Croyle For anyone interested.   01:31:43:05 - 01:32:06:12 Erin Croyle I grew up in a rural area as you know, in northeast Ohio. Yeah. And now I live it's not quite rural, but I live somewhere where you have to drive a really long way to get to doctor's and especially doctors that understand some of the really complex issues that children and adults with disabilities face. Yeah. So I'm just curious, Lisa, I'd like to hear a couple of highlights.   01:32:06:12 - 01:32:19:11 Erin Croyle Of course, without sharing private information, which we would never do from year to year, because I don't think that all of our listeners really understand some of the specific things that families in rural areas face.   01:32:19:13 - 01:32:51:04 Lisa Richard As you know, Erin there's like incredibly long wait lists for all kinds of things, whether you live close to them or you don't, because people oftentimes in rural communities don't have those resources nearby. The one just not aware of them or transportation is a huge issue for some of them because it requires so much time. It's not even necessarily the vehicle, but, you know, can you take a whole day off of work and and what that costs to get there and then you possibly have to stay overnight.   01:32:51:06 - 01:33:20:04 Lisa Richard So oftentimes those big medical appointments are put off or they're not scheduled at all. And just the supports that are available possibly in the community, very little rest that support is available. We talk a lot about telehealth, but there's a digital divide and digital literacy is often an issue. I have families that I speak with that still have landlines and are not even able to access some of those resources.   01:33:20:04 - 01:33:46:11 Lisa Richard Even if they knew about the Boston Times, what I do is I feel like a form of triage, you know, where we'll speak and we'll kind of look at what's the most important thing right now? What are you really struggling with? You need information about waivers. You need information about school IEP or just additional resources like ABA. I think families that don't know that their insurance would possibly cover special therapies.   01:33:46:13 - 01:34:12:21 Lisa Richard And so disability, I have found, can be very isolating. And it's even more isolating in these tiny communities. And I have found that communities do tend to be very supportive, these rural communities, but they also just don't necessarily always have information that can be helpful. So, you know, the benefits are that you're often in a tight knit community that can be supportive.   01:34:12:23 - 01:34:40:04 Lisa Richard But, you know, the downside is what are the resources that are out there? And really just looking at those kind of remote areas, understanding culture of them, there's trust issues sometimes, you know, getting resources outside of your community. So there's lots of different layers, but, you know, as I've done it over the years, I know better like the questions to ask and better able to listen.   01:34:40:04 - 01:35:06:21 Lisa Richard I mean, we get great training on active listening. And I mean, that's a lot of what I do is just listening to families and then better understanding what supports they're in need of and then trying to find those supports. I mean, the great thing about CFI is we have so many wonderful, talented, educated people to reach out to that if I don't know the answer, I'm always like, Hey, I'll I'll be happy to say I don't know if I don't know and reach out to somebody that does.   01:35:07:02 - 01:35:18:14 Lisa Richard And I do that quite often. The rural communities have my heart. I know what it's like. I love helping them and assisting them, and it's been a real gift to be able to do so.   01:35:18:16 - 01:35:39:17 Erin Croyle Yeah, even us within the Center for Family Involvement, we're always helping each other because even if we're well-versed in something, something happens with our kiddos or a different kiddo has something that happens and we lean on each other. And just like you said, if we don't know the answers, we know who to look to to find the answers.   01:35:39:18 - 01:35:41:23 Erin Croyle It's a really great network.   01:35:42:00 - 01:36:05:12 Lisa Richard 100%. I mean, Dawn Snow, which works with blind and hard of hearing, she was the one that taught me about waivers. And then Jen Reese is the one that consistently keeps me informed about them. And I can't even tell you how many people I've helped with waiver resources in rural communities because of those two women and CFI and how learning from them has helped me to help so many other people.   01:36:05:12 - 01:36:24:04 Lisa Richard And the CSB is now are reaching out to me because that waiver waitlist is so long and they'll say, could you possibly work with some of these families and see if they're eligible for the Medicaid waiver? The key plus and I'm able to help them now because I learned from Dawn and Jen. So we do we learn from each other.   01:36:24:04 - 01:36:25:24 Lisa Richard And it's a great support system.   01:36:26:01 - 01:36:43:13 Erin Croyle Exactly. We actually just did a special with the folks that handle IFSP funds, and I'll put a link to that in the show notes. Lisa, you do so much. Can you just talk quickly about some of your other roles within CFI and as a community member?   01:36:43:15 - 01:37:09:15 Lisa Richard I serve on multiple boards. I'm real excited about a board. Well, it's not necessarily a board. It's a regional council that Dana actually referred me to, which is Ballard Health Regional Advisory Council, and those are all the hospital systems in southwest Virginia, northeast Tennessee. And I've been able to participate in that as I've been well trained to do, bring the family perspective and the importance of that to the roles.   01:37:09:15 - 01:37:35:03 Lisa Richard And then I recently was appointed a board member for Southwest Virginia for the community service boards, for all of them in Southwest Virginia, and was just recently at a conference and asked to sit on another regional advisory council. So just sharing information about that family perspective and how important it is and necessary it is when making any sort of decisions, policy decisions or otherwise.   01:37:35:03 - 01:38:07:08 Lisa Richard And we always need to look to families and I would always say families first, because if you don't talk to the families, then it's not going to work out. It's policies don't support the families, then there's just really no need to proceed because it's never going to happen. You just can't push forward whatever your initiative is. And then personally, I sit on a community board that my son and daughter participate called River's Way, and that's just this incredible program is very inclusive and it has this remarkable walking program.   01:38:07:08 - 01:38:36:01 Lisa Richard And Zoe in Camden, my son and daughter, every day walk in different high schools, middle schools and elementary schools, as they're called, game changers, where they walk with typical students and students that are also served by special education services. And they talk to the classrooms, they walk through the classrooms, they new community theater. They do all types of different things in the community.   01:38:36:03 - 01:39:06:09 Lisa Richard It's been a real honor to sit on that board and just see how people intellectual disabilities aren't just living in the community, but they're thriving and they're providing real change and direction. I mean, they're called game changers because their people look to them for inspiration. I mean, my son sometimes walks five, six miles a and Zoe usually walks 1 to 2 miles a day, and they have a social media account.   01:39:06:09 - 01:39:23:16 Lisa Richard And so it's it's really fun to see everybody say, you know what I saw Zoe walk two miles today. So I got up off my chair and got outside. And it's been great to see them really contributing to their community and not just receiving services but being part of it.   01:39:23:18 - 01:39:39:05 Erin Croyle Yeah, and just hearing that, I think about, you know, I have a younger son with Down syndrome and the representation for students with disabilities to see they're not peers, but older people who look like them must really mean something.   01:39:39:07 - 01:40:01:07 Lisa Richard It's been so great. Erin And also this just happened the other day. I took Zoe on Saturday to McDonald's and a young woman stopped in and she grabbed Zoe and they hugged each other and she said, I remember walking with Zoe in middle school and it was such a great experience. And this happens to me time and again in the community that people recognize them.   01:40:01:07 - 01:40:34:08 Lisa Richard And then it makes me so happy because, you know, Zoe and Camden are older now and those opportunities weren't available and everybody was still really looking at segregated classrooms and specialized instruction. And and I've just seen the benefit of Zoe and Kim now being in the classrooms with kids that will hopefully not look at segregation as the option, but say, I remember having them walking with us and being with us and talking to them and why would we put them in a place far away?   01:40:34:08 - 01:40:47:23 Lisa Richard So I feel like it's doing so many things for the community and it's also helping people recognize the disabilities natural. And it's just a part of life and they're just like us. They just need additional supports.   01:40:48:00 - 01:41:01:14 Erin Croyle Yeah, absolutely. That's refreshing. So on top of all the things you're doing with work and your family, you also are a genetics navigator and you got a degree this year. Can you tell us a little.   01:41:01:14 - 01:41:02:24 Erin Croyle Bit about how you.   01:41:02:24 - 01:41:05:12 Erin Croyle Did all that and what you did?   01:41:05:14 - 01:41:35:08 Lisa Richard Wow. So I will speak briefly about the Genetics Navigator program. Really excited about that because we collaborated with Nine Mack, which is in New York Mid Atlantic Caribbean Regional Network Center, and they're seven across the country. And That collaboration has been really eye opening because we recognize a lot of people have a genetic diagnosis or don't have a diagnosis, and that genetics might be the answer for them, or at least an answer that they're looking for or to work things out.   01:41:35:10 - 01:42:13:04 Lisa Richard We're of course not in any way genetics counselors, and I know very little about genetics, but I am able, along with there's ten of us trained across Virginia to help families better access genetic services. And we've been trained to really help people better understand genetics and why it's important to understanding your child's diagnosis. And then it's not necessarily visiting a geneticist one time and getting a diagnosis that you can kind of see how whatever it is, your diagnosis is kind of works across the lifespan because different things will happen at different times.   01:42:13:04 - 01:42:35:16 Lisa Richard And it's really great to have access to a genetics counselor or to a geneticist and then really having that literacy and being able to have those discussions. So this has been a really exciting program and we continue to do outreach and presentations about it across the state. We're also partnered with the Virginia Department of Health in this program, So that's been really a great program.   01:42:35:18 - 01:43:04:03 Erin Croyle We ran into some technical difficulties, just as Lisa shared that she earned her master's in science from Virginia Commonwealth University this year. She's a remarkable woman with so much insight, as is our regional network coordinator for Northern Virginia, Jen Reese I like to refer to Jen as our waiver guru. She's always on top of the latest in that complex web of services that is so critical for so many individuals and families.   01:43:04:05 - 01:43:18:22 Erin Croyle When Jen isn't working or with her family, she's a powerful advocate for people with disabilities, especially those who are medically and diagnostically complex. I invited her to share more about her work with CFI and the FDA.   01:43:18:24 - 01:43:35:07 Erin Croyle Jen, thank you so much for joining us. I want to start by you giving us an introduction about who you are, but also who we were before I Children informs what we do so you can kind of include who you were before kids and then how your your girls changed you.   01:43:35:09 - 01:44:06:07 Jen Reese You are so before I had kids, I had a communications web content career that was at least 20 years. And then once my daughter was in 2008, I took on a real advocate role for her in her health care. And then whatever I learned, I always made sure to share with other families that progressed more, and we started sharing our story with some elected officials and decision makers to try to make sure people got resources they needed.   01:44:06:09 - 01:44:20:18 Lisa Richard So two daughters, both with disabilities, my older ones are much more prevalent and you can see it on her. And my other daughter has they call invisible disabilities, which is more mental health, atypical kind of stuff.   01:44:20:20 - 01:44:40:13 Erin Croyle Well, Jen, talking about that advocacy, you did it from the get go, which a rare thing. And I think that comes with having a rare diagnosis. I'd like to hear a little bit more about you paving the way with that and the work that you've done.   01:44:40:15 - 01:45:08:16 Jen Reese When my daughter was born, she had a really bad seizure disorder and they always assumed it was something genetic. But then they did a lot of genetic testing and everything would come back negative. And so I took the stance of we have to wait for science to catch up to her. And so finally, when she was four, she got a genetic diagnosis of a non inherited, which is considered called a noble genetic anomaly called step one.   01:45:08:19 - 01:45:31:19 Jen Reese And it is an issue with the processing of proteins in the brain. And so for a lot of the kids, it causes retractable seizures, intellectual developmental disabilities, and then everything that comes with that, you know, once we got that diagnosis, I got involved. When I Googled it first, there was nothing online except the like chemistry drawing of the proteins in the brain.   01:45:31:21 - 01:45:58:20 Jen Reese And so I created the first Facebook group for the diagnosis and was able to connect. And now we have connections worldwide with that group. Very interesting. There are some kids who get diagnosed now like three weeks old because they'll start having seizures and then genetic testing is way more prevalent now and much easier to get with insurance. And so they just send off for the whole exome genome and find, you know, anomalies.   01:45:58:20 - 01:46:38:24 Jen Reese And so kids are getting diagnosed at three weeks old. And then the oldest that we know of is in her forties. I think there's lots more people who have this diagnosis. It's it's a big spectrum and a lot of people just present with like a severe form of autism, not necessarily having seizures. So, you know, some of my advocacy also has included working with the little lobbyists, which is a group of parents that came together when the Medicaid was being threatened and, you know, has just turned into a very powerful resource organization for folks with or, you know, especially kids with any sort of high medical needs.   01:46:39:01 - 01:46:39:18 Erin Croyle Yeah, that's.   01:46:39:18 - 01:47:03:20 Erin Croyle A great group. And I'll put links to all of that in the show notes, both for your daughter's specific disability, but also little lobbyists, which it is tremendous. And we need to unite together to make any changes, as we've found out in our own work. You spoke in front of the FDA or submitted. Can you tell me more about that?   01:47:03:20 - 01:47:05:14 Erin Croyle Because that's a pretty big deal. Jen.   01:47:05:16 - 01:47:31:08 Jen Reese You are. So this is actually the second time I've done it. I back in 2019. What happens is the FDA wants to learn more about specific diagnoses, especially rare genetic diagnoses and rare diagnoses in general, and how it affects the people who have that diagnosis, their families and everything in everyday life. And so in 2019, I was invited to one before COVID in person in Baltimore.   01:47:31:08 - 01:48:13:15 Jen Reese It was connected with Johns Hopkins Hospital, and it talked about the kind of seizure disorder she has, which is called Lennox Gusto. It was great. We met in person. There were lots of other families. There were people from the FDA, people who work in the fields to really get a feeling and understanding of what that diagnosis means. So this year, the foundation for my daughter's genetic diagnosis, XP One Foundation, was working with the FDA to do a similar meeting to explain the needs of the kids, with the people, with the diagnosis, the families, and really give the FDA researchers, neuroscientists an understanding of what's going on in our lives.   01:48:13:15 - 01:48:34:12 Jen Reese And so it was an all day meeting this time it was on Zoom. They switched to Zoom after COVID and don't do anything in-person anymore. So there was an all day meeting and what they had done is identify a bunch of speakers beforehand who recorded their stories, and mine was on the topic of current and future treatments and how that would affect our family and my daughter in particular.   01:48:34:12 - 01:48:54:02 Jen Reese And so I recorded a video and they over laid some photos of my family, and I think there were ten videos that were played that day. And in addition to that, there was panel discussions and, you know, other speakers. And they also left it open for question and answer. She could call in. So we talked about all the different things.   01:48:54:04 - 01:49:15:20 Jen Reese You know, again, my daughter's diagnosis, a big spectrum. You know, there are some kids who are verbal and can walk and just have real severe behavior, you know, similar to a severe autism diagnosis. And then there are some kids like my daughter who are on the way more involved spectrum where the seizures have just cause irreparable damage to her brain.   01:49:15:20 - 01:49:36:24 Jen Reese And so she's really much more medically fragile. She needs total care. I explained, you know, her situation to people just so they get an understanding. Don't really like saying it this way, but that she's a infant in a 15 year old's body. And so, you know, like everything she needs, everything done for her. She even has a feeding tube.   01:49:37:01 - 01:50:00:10 Jen Reese And, you know, she she takes being sick a lot harder than some people and oftentimes ends up with pneumonia. So I talked about that and really the the in-depth care that she needs and what it really means for our family. And at one point, a lot of the parents on the session talking about how they wish their child could talk and and tell them when they were hurting.   01:50:00:10 - 01:50:22:24 Jen Reese And I started getting frustrated because, yes, being able to communicate would be great. But I want them to stop dying because just in the past month we've lost three more kids with this diagnosis. And it's either from SUDEP, which is sudden unexplained death from epilepsy. So it's a seizure you just can't recover from, or a lot of kids passed from severe respiratory issues.   01:50:23:01 - 01:50:43:05 Jen Reese So COVID was just a nightmare for us. People were talking about it would be great if they could communicate. And I'm like, Yes, that would be great. And I've always told Kailyn that if her first word is a four letter word, I am fine with that. But, you know, the fact that we were focusing on communication, I wanted the research to understand, yes, that's a good area to focus on.   01:50:43:05 - 01:50:54:00 Jen Reese But the overall, you know, too many of these babies are dying. So I really brought it back to that. It was it was an interesting day and it was a good discussion. And I think it'll make a difference.   01:50:54:02 - 01:50:59:10 Erin Croyle Well, Jen, thank you so much. It's always a pleasure talking to you.   01:50:59:12 - 01:51:07:24 Jen Reese Thank you.   01:51:08:01 - 01:51:37:13 Erin Croyle What Nickie, Lisa and Jen shared barely scratches the surface of what we do, Some other huge accomplishments for this year. Our mental health specialist, Patrice Beard, served as a AUCD's, children's mental health champion from Virginia. AUCD is the Association of University Centers on Disabilities. It's a member organization that supports and promotes national network of university based interdisciplinary programs focused on disability.   01:51:37:15 - 01:52:03:00 Erin Croyle Its mental health champions work in partnership with the Centers for Disease Control to develop state specific strategic plans for mental health promotion, prevention supports and the creation of networks. Think schools, medical professionals, communities. This is to promote better connections within these systems. We're so thrilled that Patrice is being recognized as the champion we've always known her to be.    Cultural brokers   01:52:03:00 - 01:52:27:01 Erin Croyle Mauretta Copeland and Edgar Gamba are both family support specialist with Project Peace. In this case, peace stands for Promoting Employment After High School through Community Expertise. This project focuses on giving a voice to youth with disabilities so they can be part of the decision making process as they transition out of high school and into the community. Finding meaningful employment.   01:52:27:03 - 01:53:01:15 Erin Croyle As cultural broker to the LatinX community, Edgar runs the El Camino Support Group. The English translation for El Camino is "the way" which beautifully summarizes what families do for one another. We show each other the way,; something we all need as we journey through the twists and turns that come with caregiving.    Mauretta has had a jam packed year. In addition to her work as CFI's cultural broker to the African-American community, she earned her bachelor's degree and became an empty nester, which can be a very different milestone when you have a child with a disability.   01:53:01:17 - 01:53:30:16 Erin Croyle Mauretta shared her experience with parenting Special Needs Magazine. I'll provide a link to that article in the show notes. It's got a lot of useful information for families whose kids are considering moving out.    Amel Ibrahim, our cultural broker to the Arabic and refugee communities, managed to publish a book in her free time. It's a 280 page book of poetry about love, homesickness, being a mother, being a human being, and having an autistic child.   01:53:30:18 - 01:53:48:03 Erin Croyle Amal has been writing since she was a child but put it on hold while raising her children. She returned to writing as a way to deal with pain and challenges. We'll be sure to let you know when the book is more widely available. This is just some of the work that we do outside of our everyday work of supporting families.   01:53:48:08 - 01:54:12:14 Erin Croyle That includes conferences in Virginia and nationally, collaborating with our funders and community partners, attending events where we can meet families and so much more. And of course, this podcast, which I launched in January in collaboration with my communications partner and friend Jill Rose, we've long recognized that there's a huge lack of information and content out there for families like ours.   01:54:12:16 - 01:54:31:01 Erin Croyle Our goal is to fill that void with entertaining, engaging, fact and resource filled programs that are relatable. We do this because we love podcasts and we recognize that there aren't really any parenting podcasts that touch on the things that we face every single day. So keep listening; rate, review, and   01:54:31:01 - 01:54:32:11 Jen Reese share this almost one year   01:54:32:11 - 01:54:40:08 Erin Croyle Old podcast of ours. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

It's natural for parents to want their children to reach their full potential. But who decides what that is? And at what cost? In part two of my interview with Heather Trammell, we explore how dangerous societal expectations can be; and how inaccurate and harmful it is to label people as high-functioning and low-functioning. (You can listen to Part 1 here!)   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    SHOW NOTES: Heather Trammell is the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago.  Freebird - the award winning short film Heather mentioning in the episode. It is a MUST watch. More about IDEA - the Individuals with Disabilities Education Act. More about the ADA - the Americans with Disabilities Act.     TRANSCRIPT 01:00:07:18 - 01:00:36:21 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:37:11 - 01:01:01:24 Erin Croyle This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down syndrome. And how the medical team broke that news to her is both shocking and heartbreaking.   01:01:02:14 - 01:01:30:20 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastic different families handle diagnoses. Heather's also a powerful advocate for acceptance of all abilities so often the disability community showcases exceptional individuals.   01:01:31:05 - 01:02:01:21 Erin Croyle These people certainly should be celebrated. In doing so, though, are we perpetuating the offensive and inaccurate idea that some people are high functioning and others low functioning? We're going to get into all of this and so much more. So let's get started. Heather, I am so excited you're here. I should add that this is part two of my conversation with Heather, a link to part one, What to Expect when the unexpected Happens is in the show notes.   01:02:02:08 - 01:02:15:19 Erin Croyle Heather, this is something you've opened my eyes to and alluded to in part one. You're very outspoken about the harm that propping up and celebrating the best of the best of people with disabilities can do. Can you tell us more about that?   01:02:16:00 - 01:02:43:20 Heather Trammell Yeah, I'm definitely seeing it. And I've seen it change a little bit over the years, too. So I think in the early years when success stories were shared through via newspaper Internet websites, whatever, it did some good and it still does some good to see representation in media, positive representation in media of people with disabilities. It really does.   01:02:44:04 - 01:03:20:19 Heather Trammell I'm not saying it does nothing, but it's not a very complete picture either. I think sometimes, especially back in the day, we would see those stories and it would not naturally occurring to us to question whether that was the experience of every person with Down syndrome. We automatically assume that it could or should be. Every experience a person with Down syndrome, they all should get to be homecoming kings.   01:03:21:03 - 01:03:47:19 Heather Trammell They all should do this or do that, graduate from high school, etc. They all should do this. I don't think we question it as much. But then I think now we question those more. I think we we ask ourselves, is inspiration pouring okay, now and back then we can ask ourselves whether it was okay, we just did it.   01:03:48:05 - 01:04:16:14 Heather Trammell Now, mind you, my child was born. There was the early 2000s. We were coming out of the 1990s 1980s where positive thinking, let alone positive representation of people with Down syndrome and disabilities wasn't out there hardly at all. Remember, idea was a long till 1970, I think five, right? At the ADA, it was never. Was it always on the books?   01:04:16:19 - 01:04:41:18 Heather Trammell I mean, positive thinking about people with guns and girls wasn't a norm. And so I think people were glad to put that kind of stuff out there. But I think we can't get over or rely on it. And we we forgot that human nature doesn't naturally get curious about stuff. Human nature would normally bend towards us not being curious.   01:04:42:00 - 01:05:07:07 Heather Trammell We wouldn't ask ourselves because every person with Down syndrome experienced this. Maybe, maybe not. What did those parents do that made their child so amazing? I don't think we were as curious back then. I don't think human nature is yet still as curious as we could be. Maybe it served a purpose for our time. I don't know that it serves every purpose.   01:05:09:09 - 01:05:36:00 Erin Croyle Yeah. I mean, I feel one could argue that it's dangerous, that it implies that someone who isn't as advanced, if you will, isn't as worthy you alluded to in the first episode. And these terms are outdated now and we shouldn't use them. But in this context, we're going to use them high functioning and low functioning. Can you go into that a little bit more?   01:05:36:12 - 01:06:01:21 Heather Trammell I wish they were more outdated than they are those terms, but yet I hear them quite often. I hear it in both the communities that I set my fucking through, both autism and in Down Syndrome. I think one of the things that makes those really harmful is I think when we categorize people with that like that, first of all, we detract from their humanity.   01:06:02:07 - 01:06:26:00 Heather Trammell That you can have a good day and a bad day. I have good days and bad days. I do taekwondo and CrossFit, and I'll tell you, some days I'm on the white board. I'm doing great. Some days I land the head shut and some days I don't. You know, am I a high functioning person or a low functioning person?   01:06:26:17 - 01:06:50:10 Heather Trammell Well, some days I'm great. Some days are not. So I think it does a disservice that way because we're not letting people be human. We're not letting people have good days and bad days. We're categorizing them by how much we get from them if they meet our needs, if they line up on our dotted line and make it easier for us.   01:06:50:16 - 01:07:18:07 Heather Trammell They must be high functioning. Mhm. And, and if they're not then they're low. So my daughter with Down syndrome can do X and Y and Z. And her friend with Down syndrome cannot. We don't ask ourselves who's more worthy of a human being. We're asking ourselves, who is making my life easier? How does it affect me? It can be kind of self-centered.   01:07:18:19 - 01:07:46:11 Heather Trammell It also doesn't actually tell us everything we really need to know. Really. So if I drop my child off at camp and they're asking me, is she high functioning or low functioning? Answering that question will not give them the information that they need. What they really need to know is she does need help in the bathroom. But if you guys go on a two mile hike, she'll be fine.   01:07:47:10 - 01:08:06:10 Heather Trammell She does not speak very well or very clearly, but believe me, she has everything you say. She'll she'll let you know when things are not going right. So it doesn't really tell us what we need to know. It also doesn't. I mean, you tell me if you agree or not, does it? It kind of put people in a box.   01:08:06:11 - 01:08:34:13 Heather Trammell Oh, yeah. Like they never change. Yeah. Like this is this. You are high functioning. Therefore you will always be high functioning. You will be high functioning. Every situation. You'll be as high functioning at ten as you are at 21. It's not giving people room for growth. Right. I know that my daughter with Down syndrome is much more communicative in certain situations than she is in other situations.   01:08:35:04 - 01:08:59:07 Heather Trammell Does that mean she's high functioning or low function? What area are we talking about? High functioning, low voice. And you can just tell me what area we're talking about. My daughter with Down Syndrome can read, but she does not do math. High functioning or low functioning is kind of a broad term that doesn't really tell us what we need to know.   01:09:00:10 - 01:09:33:18 Heather Trammell And it divides parents in every possible crushing way. I just could not go into how disappointing it is to me to hear parents talk to each other about high functioning and low functioning, or to have to insinuate that Parent A has better because their child is quote unquote high functioning and then Parent B has a much harder time because their child is low functioning.   01:09:34:19 - 01:09:58:02 Heather Trammell We're not saying that quote unquote, high functioning kids don't have needs. If we go ahead and categorize somebody as high functioning, we could go down the path of thinking they need no help at all. Well, sometimes they actually do. Or I think, conversely, that if we categorize someone as low functioning, they have nothing to say, but they don't have nothing to say.   01:09:58:02 - 01:10:27:20 Heather Trammell They have everything you say, they have lots to contribute. But we're not going to hear that because we put them in the school box. That's called both function as very, very arduous. I just hearing parents insinuate or actually say, if you would only X, Y, z, then your child would be doing better as if we were parenting little vending machines.   01:10:28:14 - 01:11:03:01 Heather Trammell Quarter in, candy out right. If I, X, y, z, then ABC will happen. But there's no guarantee of that at all. I know a parent in my local area whose has all the money all the time, all the resources, all the therapy, a huge house time, enough to invest in anything. And yet her child struggles a lot, has needs a lot of support.   01:11:04:18 - 01:11:36:09 Heather Trammell We are not parenting vending machines and we're also not trying to be you know, my child is a project parent either. So I think sometimes when we divide between high functioning, low functioning, the next question is, well, what did you do? What did you do to make their skills so great? What did you do that they were so high functioning and that we insinuate that, of course, it's all on us is we're the ones that that made that happen.   01:11:37:12 - 01:11:57:21 Heather Trammell But even the parents I know whose children are doing very well, they don't always appreciate being quizzed like that. They don't appreciate that question at all. You might think they'd be flattered by it because their children are doing so well, but they're actually not flattered by the question at all. They're like, I just let them be themselves. I'm just working with raw material here.   01:11:58:09 - 01:12:36:00 Heather Trammell They didn't do something. It was like the magic therapy, the magic supplement, the perfect educational situation, and that's how they did it. Boom, poof. There I got like, I hope I'm shrinking now. Not necessarily. Some parents are doing everything they possibly can and their children skills struggle. And I think when we divide in high functioning emotion categories, we are putting a lot of pressure on our kids to not be themselves, not letting our children be themselves.   01:12:36:08 - 01:12:47:21 Heather Trammell And we're putting pressure on ourselves to be the deciding factor of how well our children are doing as that depending solely on us. And I'm not I don't believe it does.   01:12:49:22 - 01:13:09:04 Erin Croyle I think more parents need to hear that. I shout it from the rooftops because it really is something that exists. And I have had parents of older children with Down syndrome make very sweet suggestions, mind you, but.   01:13:09:10 - 01:13:10:23 Heather Trammell Comes from a good place. I'm sure.   01:13:11:05 - 01:13:41:21 Erin Croyle It does. Yeah, it was. You know, here here's like this accomplished adult and I hear from the parent, Oh, well, I read this with him and I did this with them and I did this. And here I am. I've invested all this time and money in the learning program. I can't even get my son to engage. I can't I take the materials out and he won't sit with the same, same and but when you attend the courses, they're like, Oh, well, then you're doing it wrong.   01:13:42:00 - 01:13:43:03 Heather Trammell Yeah, maybe it.   01:13:43:03 - 01:13:58:02 Erin Croyle It is so frustrating because especially as mothers, I think we put it on ourselves as if it's our failure and then it does our child a disservice because we're we're like trying to push them to do something that they just aren't there for.   01:13:58:07 - 01:14:29:24 Heather Trammell And begging ourselves up on the way. As parents, you know, think about our friends whose children have Down syndrome and autism together. That cajoling nurses, this very challenging situation. They are doing everything they possibly can to help their children. They love their children. They would want their children to be as successful as they possibly can, but their children might have challenges that other kids don't who don't have a diagnosis like that.   01:14:31:08 - 01:14:58:08 Heather Trammell Let's not beat the parents up. Let's not encourage other parents picking them up and let's not encourage them to beat themselves up either. They are doing the best they can. Sometimes in my parents support experience, I will be perfectly honest with you. And there are some parents I find very frustrating to talk to. Go figure. Sometimes I do everything I can to make the best suggestions possible and I don't see them pick up on it.   01:14:58:19 - 01:15:23:13 Heather Trammell They don't move forward with any of the suggestions that I took a lot of time to pull together for them. And I do find that very, very frustrating. But they really still are doing the very best that they can. I think of some families where they don't have a lot of margin. You've heard you've heard the phrase about margins.   01:15:23:13 - 01:15:47:22 Heather Trammell Maybe you've read the book. I have a certain amount of margin in my life. We are a stable family with stable finances. I am not in danger of the lights being cut off. I'm not in danger of food not being on the table. I have margins that way. There are some families that don't have those margins. They have their finances are extreme and we take they are food scarce at the end of the month.   01:15:48:04 - 01:16:07:11 Heather Trammell Maybe their children experience more difficulties than my children do. Their margins are a little bit smaller. And so even when I have frustrating conversations with parents or frustrating situations and I'm like, I don't know what else I can do to help this parent, I have to realize that they are doing the best that they can with the margins that they have.   01:16:08:01 - 01:16:22:11 Heather Trammell And sometimes when children struggle more, when they have more high support needs, our margins might be a little bit smaller. And I think we need to recognize that and still celebrate that person and support that parent.   01:16:23:24 - 01:16:26:22 Erin Croyle Yeah, and support that parent maybe even more so.   01:16:26:22 - 01:16:27:12 Heather Trammell Yeah, even.   01:16:27:12 - 01:16:33:00 Erin Croyle More. And it's that analogy is interesting because I think about how our margins shift over time. You know.   01:16:33:03 - 01:16:33:17 Heather Trammell They do.   01:16:33:17 - 01:16:35:15 Erin Croyle You have aging parents, and you have to help them.   01:16:35:16 - 01:16:36:18 Heather Trammell True.   01:16:36:20 - 01:16:39:18 Erin Croyle Right. Or loses a job or.   01:16:39:24 - 01:17:01:17 Heather Trammell Yeah my margins were a lot smaller last school year than they are going to be this school year. My children had educational needs last year. That just took a lot of time for me, lost a lot of sleep over it. What about peace? Enjoyed stress free living. So last year was not my best year and I had to drop out of my gym classes.   01:17:01:22 - 01:17:32:09 Heather Trammell I love my gym classes very much, but because my family needed me, I had to cut loose some stuff. So my margins were a little bit smaller last year. I'm looking forward to them being a little bit bigger this year. That'll be great. But when my family needs change, I change with them. If I did have a health care condition last year or any time, if the main breadwinning parent dies or something, your margins change and they would naturally change.   01:17:32:09 - 01:17:56:05 Heather Trammell If your child's struggles were different one year than they were to another year too. So again, that's what, you know, the whole high functioning, low functioning discussion is so boxy that it doesn't allow for any changes. We've just categorized them. Poof, you are high functioning, you know, And then they they never can change. They can never, never get out of the box.   01:17:56:22 - 01:17:57:20 Heather Trammell I find that difficult.   01:17:58:11 - 01:18:15:12 Erin Croyle Yeah. And I think it's rooted in able ism. I think about right through. Yeah. When my son was young and I was seeing the geneticist and specialist and driving him in there. Yeah, I remember before knowing how terrible the term is, asking what you think he'll be high functioning and like.   01:18:15:12 - 01:18:15:22 Heather Trammell Really.   01:18:16:07 - 01:18:23:06 Erin Croyle Clinging on to that. And then in the Down syndrome community, we have these amazing figures like David Egan in.   01:18:23:06 - 01:18:23:19 Heather Trammell Yeah, true.   01:18:23:22 - 01:18:27:05 Erin Croyle Frank Stevens and all these other amazing people.   01:18:27:14 - 01:18:28:00 Heather Trammell They are.   01:18:28:01 - 01:18:40:03 Erin Croyle And that is a true inspiration. You know, I had my son and I got to meet these people and, you know, David's of friends and yeah, but in my mind I was like, Well, that could be my son.   01:18:40:17 - 01:18:41:01 Heather Trammell Right?   01:18:41:06 - 01:19:06:15 Erin Croyle But those are my dreams. And it's become clear that one, those are my dreams, right, too. Not every kid can get a standard diploma if they have Down syndrome. And fighting for that, it puts pressure on you as a parent, but also pressure on your child that maybe we need to rethink our dreams as a parent and look at who are kid is, right.   01:19:07:10 - 01:19:37:05 Heather Trammell Oh, you think? Yeah, maybe we do, you know, And I think that I think that's part of a real challenge when you're when your child is very young enough, is to be chasing those things down, chasing down your dreams rather than their dreams. And to have have a vision in your mind about what you want. And you will not settle for anything less than that.   01:19:37:23 - 01:19:56:06 Heather Trammell Nothing will change that. I'm not saying that some of us don't have deeply held values and convictions, that we like it that way, and we are going to keep it. You know, people who have faith convictions, they are not going to think they love God the way they love God and they plan on changing that. And and I'm one of them.   01:19:56:23 - 01:20:29:08 Heather Trammell But I think people change. And so I want to appreciate the fact that my daughter daughter's plural, will change throughout their lives. And they're not a little box. And I could have had a dream that my older daughter would get a scan their diploma, but she did not get a scan or diploma. Well, what happens to me then, if your child doesn't reach X, Y, Z level of high functioning, what will happen to you?   01:20:30:04 - 01:20:58:08 Heather Trammell Will you fall apart? Will you blow up into a thousand pieces? What will happen to you? I appreciate parents going for the gusto, especially when their children are young. You don't know what your child is going to accomplish. Go for it. Live it up and go for it. And if it changes, change with it. Ask yourself what's going to happen if you don't get X, Y, z?   01:20:58:21 - 01:21:10:12 Erin Croyle What kind of person will you be? It's a good question to ask as we pursue the high functioning path. If that's the path that matters, keep my dog. I love my dog.   01:21:11:04 - 01:21:31:22 Erin Croyle I love my dog. I love that you just said that. You've put it in such a perfect way to go for it when they're kids. But I also want to touch on the predatory businesses I think about. I don't know if this speech pathologist is still marketing certain tools, but I think.   01:21:31:22 - 01:21:32:11 Heather Trammell About.   01:21:33:12 - 01:21:43:11 Erin Croyle This program where there were tools to use, and this would help with the low muscle tone, and your child will speak clearly and come to our seminar and buy the tools. It's $900 a person.   01:21:43:17 - 01:21:47:21 Heather Trammell Exactly. And then the tools are $500, right?   01:21:47:21 - 01:21:56:13 Erin Croyle Yes. And then you go and you spend this money and then your kid's still not doing it and you blame yourself. And there you are as a family, stressing out.   01:21:56:16 - 01:21:57:06 Heather Trammell Right.   01:21:57:12 - 01:21:59:02 Heather Trammell And you have money left for vacation.   01:21:59:02 - 01:22:29:22 Heather Trammell Right, right, right. I share your concern here. And predatory is not and is not a bad word. Use that. That's pretty well said. Predatory. If it is so good, if it's just the bomb dot com therapy and really every child should do this, then what about my parents who have financial needs? What about low income families? Families who don't speak English as a first language?   01:22:30:12 - 01:23:00:12 Heather Trammell Can this program be implemented? If I have two children or 12, can I implement this program as a single parent? Can I implement this program with a not so cooperating co-parent? Will this program be effective if school doesn't do it? If I'm the only one doing it predatory? If you don't buy my product, do my thing. Your child is not going to do well.   01:23:01:18 - 01:23:27:09 Heather Trammell Oh, I can't tell you how disappointing I hear that that is just really, really crushing. And you make such a good point. It's like, well, now you have no money left over for vacation. Now you are sick. It's mortgaging your house on the thought that your child might respond well to this thing, whatever it is maybe your child does.   01:23:27:19 - 01:23:38:24 Heather Trammell But then again, maybe they go right. What happens if they don't? Now you second mortgaged your house. You have quit the job you love. Well, blood work that matters to you so much.   01:23:39:18 - 01:23:57:15 Erin Croyle Yeah, it's really harmful. And you see it a lot. And I think it's a societal thing where we see disability and we either want to overcome it. Yeah, we want to fix it, but we have yet to just accept it and let people be who they are.   01:23:58:02 - 01:24:08:11 Heather Trammell Correct. Correct. I'm sure you saw this YouTube video years ago. The name of it is called Freberg. Ring a Bell for You?   01:24:08:11 - 01:24:09:13 Heather Trammell Sounds familiar.   01:24:09:13 - 01:24:35:07 Heather Trammell Okay. If you if you see it, it's an animated saying follows the life of a baby with Down syndrome all the way until they're an adult. At the very end of the video, they have these little snippets of people with Down syndrome. Again, it's animated, but they are real people. They have a caring Gaffney in there and they have the phrase says free to be got got it.   01:24:36:03 - 01:25:06:20 Heather Trammell And then underneath they'll say, Mary, for 25 years, free to be a guy, which is caring. Gaffney has a free to be and the guy and there's there's a couple of different scenarios The very last person that they showcase in that little video is it says Free to be. And then parentheses never learn to speak lived in his his small community all his life.   01:25:08:05 - 01:25:37:05 Heather Trammell So basically he can grow up to be like, amazing. Like whatever we think the high functioning amazing is. And then the video takes that phrase where it says free could be dot, dot, dot, and it takes out the dots until there's one period. Free to be, just free to be. Hmm. Wouldn't that solve the high functioning, malfunctioning question if we were all just free to be, period?   01:25:37:14 - 01:26:05:17 Heather Trammell Not free to be and then fill in the blank? Yeah, You. I mean, Americans are like this. We think anything can happen, right? Western thinking is just like this. But I think just to be just be without being amazing, without being what the world thinks is amazing. What America thinks is amazing, what Indonesia thinks is amazing. Just be I love that video.   01:26:05:17 - 01:26:10:03 Heather Trammell I highly recommend it to Everybody is called Free Bird.   01:26:10:05 - 01:26:37:05 Erin Croyle I'll make sure I put the link in the description. And I love that idea too, because I think about different people, whether disabled or not. And high functioning, low functioning. Let's think about just who you are as a person. We're all good at some things and not so good at others. And for and so some people are exceptional and there we see them in politics or on a national global scale.   01:26:37:17 - 01:26:47:08 Erin Croyle And then some people are just really, really good at being a good community member or really good at playing pickleball or, you know, whatever.   01:26:48:09 - 01:27:16:02 Heather Trammell What if Beth Trammell, if nobody ever knows Beth Trammell beyond Central Springfield, Virginia. Mm hmm. That's it. Let's say she always lives in central Springfield. She never writes a book. She does not go to university. She doesn't get married. She's not on anybody's blog or podcast. What if what if she just lives a quiet life in her community?   01:27:17:07 - 01:27:37:11 Heather Trammell Is that a bad thing? Well, if I ask you American, that I mean, we all want to be like so accomplished. Accomplishments are very big in America. That's why we want our kids to go to top colleges and stuff like that. That's why we push them so hard in high school so that they'll have great college entrance recipes and stuff like that.   01:27:38:13 - 01:27:43:24 Heather Trammell We do it to our typical kids as much as we do to our kids with disability. The outcome is not better.   01:27:45:09 - 01:28:05:14 Erin Croyle No, and I think about programs like Think College, where you can send a child with an intellectual developmental disability to school, to live on campus, to do the things. Yep, it's incredibly expensive. And when they get out, there's no guarantee for a job or rec.   01:28:06:12 - 01:28:39:17 Heather Trammell Correct? That is true. If even if we spend all the money on the therapy and the therapy tools and we a we die on the hill of inclusion all the way through their high school graduation, they're still going to have Down syndrome. They're not going to stop having Down syndrome. And society will not evolve that fast, that our individuals with Down syndrome really will be afforded all the same opportunities as somebody without.   01:28:40:05 - 01:29:10:11 Heather Trammell Now, mind you, our society is light years ahead of some non-Western countries. Let me tell you. That's just that's my personal professional experience. Our society does not move quick. We still have a long way to go. Sometimes some of the foreign-born parents that I know who immigrate here, who actually immigrate here purposefully legally to give their children a better life here, are coming from countries where there's like zero.   01:29:10:16 - 01:29:37:11 Heather Trammell There's just nothing, you know, and so something is better than nothing. Sometimes disappointing for them when things aren't magically better or they're magically easier. There's nothing easy about special education. It's a very arduous system. They're disappointed when things don't just magically get better. I think the same thing for all the therapy and stuff that we invest in, we we get disappointed when things aren't magically better.   01:29:37:22 - 01:29:51:03 Erin Croyle They might get better. And I'm glad when they do believe me, but sometimes they might not. What then? Can we just be? Period? Can my daughter just be? I hope so.   01:29:52:21 - 01:30:23:07 Erin Croyle You know, there's still these just embedded ablest ideas in our society. And I think some of that starts even in earlier intervention. I think don't get me wrong, early intervention is one of the best things ever and it should exist and continue and we should support it and do more of it. But I just know in my personal experience how you start early intervention and then you're thinking I need more and you add more therapies on.   01:30:23:07 - 01:30:44:07 Erin Croyle And I found myself just so stressed out. We would do early intervention and then we would tack on some speech therapy to help in the future. And I would be lugging my son and then his little brother would never get a proper nap because I thought I was doing what I had to do for him.   01:30:44:10 - 01:30:57:18 Heather Trammell Through hyperventilation and parenting. All that hyperventilation, Parenting or My child is my project parenting. Yeah, the very, very difficult. Difficult on the family.   01:30:57:18 - 01:31:01:20 Erin Croyle It is. But the medical models really push that still.   01:31:02:01 - 01:31:02:12 Heather Trammell Right?   01:31:02:18 - 01:31:18:18 Erin Croyle And you see a geneticist or whomever and they refer you to a behaviorist and you know, the behaviorist will give you these things to do that are. Yeah, possible unless you're like superwoman.   01:31:19:08 - 01:32:02:13 Heather Trammell Right. Or there's somehow the average day extending 8 hours. Right. Or you didn't have to parent your one, two, three other children or whatever. I hear that often from newly diagnosed parents in my autism circles where the professionals will will recommend ABA therapy every single time. That's the way to go. And then when they contact ABA therapists, if they find anybody that has an opening, and if those people accept their insurance, which is not always true, they're recommending 20 to 30 hours a week of therapy on top of preschool or, you know, enhanced autism classes that they're already going to.   01:32:03:05 - 01:32:23:14 Heather Trammell But when does this little guy get a breach already? I feel really badly about that. And that's, again, I think, to what you said before, looking at disability as a medical model, it has to be fixed. Therefore, we're going to fix it. Some people have benefited from ABA therapy, some people have, but some people have been greatly harmed by it too.   01:32:24:15 - 01:32:43:01 Erin Croyle Yeah, and therapies in general. I just I guess I want to say this because I wish I could go back and give myself a hug in those early years and I still beat myself up now. But, you know, you're supposed to bring Pax cards with you all everywhere you go to help your kiddo speak or.   01:32:43:04 - 01:32:43:11 Heather Trammell To the.   01:32:43:11 - 01:32:54:21 Erin Croyle Beach. Well, I mean, that's the thing. They instead of teaching American Sign language and having that be the standard by having teachers learn it. Yes. Parents want to do all of these things.   01:32:55:02 - 01:32:56:00 Heather Trammell Yes.   01:32:56:00 - 01:33:08:09 Erin Croyle Yeah, I work and then I plans which. Okay, great pro quo is great, but guess what? ASL is better. I don't have to worry about my kid jumping on YouTube. I don't have to charge batteries. It's everywhere.   01:33:08:09 - 01:33:27:01 Heather Trammell It's not going to break. Your kid won't throw it or throw it out the window while you're driving or whatever, right? I mean, yeah, I I've always felt that way about sign language as well, is that I wish more people would use it with my daughter with Down syndrome or at least fake it.   01:33:27:04 - 01:33:27:13 Heather Trammell Right.   01:33:27:21 - 01:33:49:14 Heather Trammell You know, I mean, with all due respect to the deaf and hard of hearing community, I would rather at least see my somebody try by using gestures or something with my daughter takes first of all, it keeps her attention better. And she will certainly be following your directions much better than if you give her a paragraph long essay about what you want her to do, you know.   01:33:49:14 - 01:33:59:24 Heather Trammell And she didn't take it to the beach. She can take it on a plane. It doesn't need to be charged, it won't wear out, etc.. Right. I totally agree. Love it.   01:34:01:17 - 01:34:15:06 Erin Croyle It's really difficult. And I think that it's really damaging for parents to keep having these models of just the best that we see everywhere.   01:34:15:06 - 01:34:15:19 Heather Trammell Yeah.   01:34:16:05 - 01:34:27:09 Erin Croyle Not being able to love your child for who they are. I mean, I know that people love their child, but worse. Why are we trying to fix them? Why aren't we trying to fix society?   01:34:28:11 - 01:34:55:16 Heather Trammell Yep, yep. My younger daughter actually told me that once she was in fifth grade, I think fifth grade. And I said, Well, do you want to go to the IEP meeting with me? No, I want to go. Okay, that's fine. Well, what would you like me to tell them? I'm here to speak for you. And she said, Tell them I'm not broken and I don't need to be fixed like that From a fifth grade autistic.   01:34:56:00 - 01:35:19:08 Heather Trammell I'm like, Bravo, girl. You are my people. I love you. I do feel really heartbroken for my parents who beat themselves up thinking they need to do everything to enhance their child's high functioning. This, so to speak. Have you ever gone to the national conferences, National Down Syndrome, Congress convention?   01:35:19:13 - 01:35:22:11 Heather Trammell I did years ago when it was in D.C..   01:35:22:17 - 01:35:58:21 Heather Trammell Okay. I went when Beth was very little, just a newborn. And I remember meeting other parents and actually being that parent who would walk around the national conference thinking, I need to do this. I think we're not doing this. Oh, my gosh, we're not doing this. You know, And I remember feeling that real anxiety. And I, I caught myself because, first of all, know, my husband and I had already discussed that, you know, we were we're not going to do every single therapy known to the free world.   01:35:58:21 - 01:36:12:07 Heather Trammell We already had that normalize. But I could see the anxiety that it raised in other parents. And it really hurts my heart to see other parents with that kind of anxiety is hyperventilation parenting, so to speak?   01:36:12:15 - 01:36:35:13 Erin Croyle It is. I don't think it's something that the parents can help. I think it's something that we need to change. And I wonder, Heather, with your experience all this time, I'm 13 years into it. You're 20 some years into it. What could we do that's different? We showcase these amazing individuals, but is it a matter of showcasing everybody?   01:36:35:13 - 01:36:41:09 Erin Croyle How can we change? There's perception that everybody has value.   01:36:42:00 - 01:37:21:11 Heather Trammell I'd like to see everybody get involved. So not just the parents. I want to see teachers treat their students like that, like case managers. You service people, employers, everybody would have to get involved. You can't have one segment of society like stepping up their game and the rest of us not. I'd like to see everybody get involved. I think it would take a fundamental change in the hearts and minds of Western American thinking that we just really a disability or no disability.   01:37:21:11 - 01:37:47:19 Heather Trammell We value people with skills. We're all about it. Remember that community college is not second rate college. If your child doesn't go to university, the same for trade school. You know your child has settled just because they went to trade school. This is a fundamental change in American thinking and every segment of American society, we have to be involved in that.   01:37:48:08 - 01:37:51:21 Heather Trammell We have to be we have to rally the troops, so to speak.   01:37:52:02 - 01:37:54:15 Heather Trammell Yeah, just a minute of mind shift.   01:37:55:05 - 01:38:19:14 Heather Trammell A mind shift of everybody. Everybody we have in bulk. So really, we we parents have been on this train for years. I mean, that's why we started the idea, because we were like, well, children, we have a right to go to school. So, yeah, I mean, we've wanted our children to have the best all along, wanted people to accept them all along.   01:38:19:20 - 01:38:41:18 Heather Trammell And we keep having to drag different segments of society along with us. The medical establishment, the educational establishment, the service people. We keep on having to drag people along. It's been very hard. If everybody would get on the train, I think we could make that actually, that would help.   01:38:42:21 - 01:39:12:18 Erin Croyle You mentioned IDEA, which some people say I-D-E-A. So for anyone listening, it's the individuals with disabilities education, which was passed in 1975. But here now, it's still not fully funded. The Americans with Disabilities Act was passed in 1990. We're still not really fully compliant. That mindset shifts. I think part of that happens with representation. So how do we change our representation to represent the full scope of what disability is?   01:39:14:22 - 01:39:38:02 Heather Trammell One of the things that I am going to do this year is that I had invited a grand marshal and a CO grand marshal for our buddy walk. I'm not involved in the Buddy Walk planning except for grand marshal. That's my that's my job for our buddy walk this year, buddy. Walk our big outdoor fund raising awareness festival for our organizations.   01:39:38:04 - 01:40:07:17 Heather Trammell It's really a great, fun time. And I invited a grand marshal who is well known in our area, whose skill development is stratospheric, fabulous individual. Everybody wants their child to be like her. And then I invited a co- grand marshal who has a co diagnosis of autism and Down syndrome, and her remarks will probably be read or will be used for an and augmentative communication device.   01:40:08:02 - 01:40:38:13 Heather Trammell Whatever remarks she shares with our organization on that gate, I've invited her to be on the platform that day because we're not just the high functioning group. We're not just the group that champions the stars. We champion all people with Down syndrome. That's one thing that I am doing. I think we could be giving more airspace to people who just be.   01:40:39:10 - 01:41:31:11 Heather Trammell What if Beth Trimble had a blog and you can see her going to the post-secondary amazing university program in my area? But you saw her going to her favorite youth group activity on Wednesday night or go to church with us on Sunday morning or go to school every day where she receives quite a bit of assistance and school just be well, if there is a blog out there just for that, what if we encouraged and and highlighted those things to our newer families so that they would see the entire spectrum of life with Down syndrome, not just the very highly skilled, capable individuals.   01:41:32:18 - 01:41:33:09 Heather Trammell I love that.   01:41:33:09 - 01:41:37:18 Heather Trammell Heather It would be a great, great way to go. Media goes a lot of things.   01:41:38:03 - 01:41:49:03 Erin Croyle Right? It does. At the grassroots efforts really help the social media. Social media helps because, you know, the networks don't cover this stuff necessarily.   01:41:49:16 - 01:42:12:15 Heather Trammell Yes, correct. Networks like the Homecoming king, I guess, you know, they love that kind of stuff. And I'm not saying that that person deserved to be homecoming king or whoever they were, whatever school it was. And I'm sure they enjoyed that moment. But so did the the kid in the band who's playing the cowbell, did we not We didn't give him any airtime.   01:42:13:07 - 01:42:34:10 Heather Trammell Right. Or my daughter, who will never be in anybody's band anywhere if she's in the stands and her favorite, you play all the music and she will be dancing back and forth for the entire night, I assure you. Right? That's how she rolls with music. She's not going to get a video spot on the NBC that night.   01:42:36:10 - 01:42:41:14 Heather Trammell Why don't we ask ourselves why that is? Do we ever ask ourselves why is that? No right?   01:42:41:23 - 01:42:43:22 Heather Trammell I have a theory of why that is.   01:42:44:12 - 01:42:45:03 Heather Trammell What's your theory?   01:42:45:03 - 01:43:00:17 Erin Croyle Tell me when we post the homecoming king or we post the kid that makes the basket at the end of the game. We're celebrating the kid with a disability. Sure, But it's more celebrating ourselves because we helped him do that. And so we feel good about ourselves as a non-disabled.   01:43:00:24 - 01:43:23:18 Heather Trammell Right? It's all about us. Isn't that sad? Isn't that sad? It's one of the things that I emphasize to the volunteers I work with in our parents support program, wonderful volunteers. They really want to, you know, be there to be a mentor, support to new parents and stuff. And have to go through a long training to do that with our organization.   01:43:24:02 - 01:43:44:22 Heather Trammell One of the things that I emphasize a lot throughout the day is it's not about you. This is not about how you feel about Down syndrome. It's not about getting others to feel the way you do about Down syndrome. It's not telling others what you think they need to know about Down syndrome. It's actually listening and being there for them.   01:43:45:19 - 01:44:08:01 Heather Trammell Whatever our new parents are thinking or feeling at that moment, however, whatever non people first language they use, if they have the R word Lacey in their entire conversation, if they're so upset, they can hardly get through a sentence with you. If they just think that the world is coming to an end. That's where they're at right now.   01:44:08:22 - 01:44:24:24 Heather Trammell So listen to them right now. I'm sorry. That doesn't have to do with high functioning, low functioning subject of the day. But those just came up to me that we need to listen to people, listen to all people, regardless of whether they have spotlight activities or not.   01:44:25:19 - 01:44:47:03 Erin Croyle And I think, too, we have to remember that the people that we're seeing who are doing the public speaking and out in front, they communicate in a traditional way. If we made an effort to communicate with other people who don't communicate traditionally, we would hear some amazing things from those people as well.   01:44:47:20 - 01:44:59:13 Heather Trammell You would. You would. And we need to hear those people much more often than we do or have whatever they're trying to tell us translated so that the rest of us can understand. Yeah, agree, agree.   01:45:00:02 - 01:45:16:00 Erin Croyle And keep in mind, too, that a lot of the people who are speaking and are able to communicate traditionally they're getting assistance in in writing those and in practicing. So there's no shame in anyone getting assistance, in communicating in the way that they do.   01:45:16:05 - 01:45:43:19 Heather Trammell I mean, I think we forget that. I think that some of the local self advocates that I know who have done a lot of speaking from the platform keynote presentation, etc., they get a tremendous amount of help from their families to create those presentations. They're reading those presentations. They didn't memorize those presentations. They're reading them because they wrote them already and they had help writing them, right?   01:45:43:19 - 01:45:49:05 Heather Trammell Yeah, absolutely. We all still need support. We all do. Good grief.   01:45:50:07 - 01:46:03:18 Erin Croyle Everybody. The president of the United States has good writers, so let's do that. Some things. Heather, I have kept you for so long. Is there anything you want to add? I could talk about this forever, so.   01:46:03:20 - 01:46:14:04 Heather Trammell Oh, I could talk with you about anything for hours. Same thing now. We covered a lot of really good stuff, Erin. Thank you.   01:46:20:24 - 01:46:35:07 Erin Croyle And thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline.   01:46:35:10 - 01:46:44:07 Erin Croyle And are always welcome to ideas. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

When you have a child with a disability, you become more than just a parent. You become a caregiver. And many of us "parent-caregiver hybrids" have a lot to learn about supporting a child with a lifelong disability.    Medicaid waivers can be one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based (HCBS) waivers to support people who want to live at home or in their community; "waiving" the option of living in an institution. These HCBS waivers are offered by nearly all states and Washington DC. The shift to community based living and person-centered care is an ongoing process. As is phasing out state-run institutions that are still operating in more than 30 states.     Waiver programs vary greatly when you cross state lines. You can find more information about each state on the federal medicaid website.    While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the Developmental Disability Waiver or the "DD Waiver" and the Commonwealth Coordinated Care Plus Waiver or the "CCC Plus Waiver."    Like institutions, waivers deserve a podcast of their own. The Virginia waiver system is complicated and subject to change. The My Life, My Community website has more information and helpful links. The Arc of Virginia has an in-depth and easy to understand breakdown of Virginia Medicaid waiver programs that is updated regularly. And the Center for Family Involvement has 1:1 informational and emotional support with staff that focuses on the nuances of Virginia waivers and can walk folks through what can feel like an endless maze. If you're not in Virginia, Parent to Parent USA can connect you with supports in your own state to help you understand the systems there.    Bottom line: waivers are a crucial component in accessing the supports needed to live independently. It's critical for parents to understand them; and if a waiver is needed, prioritize applying for one. That's because the waitlist is long. More than 14 thousand Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode: help and hope for people who are on that waitlist, and for their families.    The Individual and Family Support Program or IFSP provides funds for those on the Virginia waiver wait list. But you have to apply. That's why we brought on IFSP Support Coordination Supervisor Rhonda Gaines and Program Manager Heather Hines to explain more.    SHOW NOTES:   IFSP Call Center Monday-Friday 9:00am - 4:00pm: (844) 603-9248 My Life, My Community   IFSP Resources   For more IFSP Council Information email and to apply: [email protected]   Facebook Pages for IFSP Councils: https://mylifemycommunityvirginia.org/taxonomy/mlmc-menu-zone/connect-ifsps-regional-councils             TRANSCRIPT: 01:00:07:17 - 01:00:34:18 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's syndrome in 2010. Not only did I have to learn how to be a mom, I had to educate myself about how to support a child with a lifelong disability.   01:00:34:20 - 01:01:04:16 Erin Croyle Medicaid waivers were and still are, one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based waivers to support people who want to live at home or in their community, waiving the option of living in an institution. State run institutions are still operating in more than 30 states. These HCBS waivers are offered in nearly all states and Washington, DC.   01:01:04:18 - 01:01:29:14 Erin Croyle The shift to community based living and person centered care is an ongoing process, and waiver programs can vary greatly when you cross state lines. I'll provide more information on waivers in the show notes. While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the developmental disability waiver or the DDD waiver and the Commonwealth Coordinated Care plus waiver or the CCC plus waiver. The Virginia waiver system is complicated and subject to change. I'll put more information about Virginia waivers in the show notes as well. What is important to know is that for many people with disabilities, waivers can be crucial for accessing the supports they need to live independently.   01:01:54:09 - 01:02:19:13 Erin Croyle It's critical for parents to understand them, and if a waiver is needed, prioritize applying for one. That's because the wait list is long. More than 14,000 Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode. Help and hope for people who are on that wait list and for their families.   01:02:19:15 - 01:02:39:14 Erin Croyle It's called IFSP, which is short for individual and family support program. And joining me today to break it all down are IFSP Support coordination supervisor Rhonda Gaines and program manager Heather Hines.   01:02:39:16 - 01:02:50:08 Erin Croyle Hello and welcome. Although our focus today is on funding and counsels. Heather, can you take a moment to tell us a little bit about all four service components of IFSP?   01:02:50:10 - 01:03:24:16 Heather Hines Yes. Thanks, Erin. It's great to be here. We really appreciate you giving this program some attention. We are part of the individual and family support program, as you said, IFSP, and that is part of the developmental services Division within the Department of Behavioral Health and Developmental Services. So IFSP will try to stay away from the acronyms. But yes, we'll be talking a lot about the funding program today and our state and regional councils.   01:03:24:18 - 01:03:56:02 Heather Hines But we do have multiple components of our program. I want to tell you a little bit about this. Our primary goal is to provide supports and resources to individuals regardless of their age and their families who are waiting for a waiver slot. You did a nice job of describing what that is a little earlier. We recognize, first of all, that if you were on an 80 waivers waitlist just by the fact that you're on that waitlist, you have significant needs.   01:03:56:04 - 01:04:24:20 Heather Hines So the level of urgency may vary from person to person and family to family, but we know that there is not a single person on that waitlist sitting around filling their fingers and saying, oh, life is easy. We also understand that navigating the system, the DD system, and knowing where to go for resources can be overwhelming. We also know that many families feel isolated and might not know anyone else going through what they're going through.   01:04:25:01 - 01:04:45:13 Heather Hines Feeling alone, not knowing where to go, not knowing what to do next is a lot. And so it's exciting to be part of a team that can hopefully, as you said, bring some help, bring some help to those families and to the individuals while they wait for that funding. A little bit more about the different parts of our program.   01:04:45:15 - 01:05:11:15 Heather Hines So, as you know, Erin, we have a partnership with your team, the Center for Family Involvement, and we fund some of the work that you all do to support families. And we truly believe that family mentoring is extremely valuable and that families deserve to be able to talk to someone who has been where they are and can provide that emotional support while also helping them figure out what to do, where to go next.   01:05:11:17 - 01:05:50:17 Heather Hines And that is wherever they are on their journey. Our partnership with VCU is very important. It also includes LEAP training, which stands for Leadership for Empowerment and Abuse Prevention training. We're excited to partner with you on that. Another partnership we have is with The Arc of Virginia, and that is to provide peer mentoring opportunities. Peer mentors are people with developmental disabilities who are hired, trained and paid to provide guidance and support and resources to other people with developmental disabilities to help those people achieve the life that they want.   01:05:50:19 - 01:06:11:17 Heather Hines Peer mentors are dedicated to helping others reach new levels of independence and inclusion in their communities. Then we have our community coordination program that supports community action and engages individuals and families through our regional and state councils. And you will hear when Rhonda gets to talk a little bit more, she'll tell you a little bit more about those.   01:06:11:18 - 01:06:40:05 Heather Hines We also have a partnership with Senior Navigator, which provides education information and general referrals through the My Life My Community website. I'm sure you're going to have links to that website in your show notes. Some families may have used this website for reference to my life, my community website, the IFSP resource for Family page, A specifically for families, individuals who are looking for resources, waiver, non waiver, anything goes here.   01:06:40:05 - 01:07:04:07 Heather Hines But we just want to make sure people have information that is important to them in one place and folks need help navigating the system or finding services support. There's actually a call center that we have with my life, my community. There's a toll free number that maybe we can add in your notes as well. Anyone can call and speak to a live person between nine and four on Monday through Friday.   01:07:04:09 - 01:07:31:05 Heather Hines So that's a great partnership as well. We encourage families to check out that website and we hope it's helpful for folks. And then we have a communication component. We have a monthly digest that we put out to individuals and families targeting, again, primarily people that are on the DD waiver waitlist. But it's really for anyone that's interested and trainings, events, resources, usually low cost or free.   01:07:31:05 - 01:07:43:03 Heather Hines That's one of our roles. And we have annual messaging that goes out to everyone on the waitlist, social media presence and a lot more. So there's more to IFSP than funding.   01:07:43:05 - 01:08:08:22 Erin Croyle There is a lot more. And those partnerships you mentioned, I know all of us at the Center for Family Involvement and the Partnership for People with Disabilities, which CFI falls under. We care deeply about helping individuals and families and many of us are those families. We have lived experience and we know how hard this can be. We want to make it easier and we collaborate with our community partners, such as The Arc of Virginia to do that.   01:08:08:24 - 01:08:17:15 Erin Croyle Of course, we realize how important the funding is to families. So let's turn to that now. Tell us more about the IFSP funding piece.   01:08:17:17 - 01:08:48:03 Heather Hines So the IFSP team administers this funding annually. It is one time for fiscal year, not calendar year. So that's one time between July and June every year. The funding portal opens for application for 30 days, so it opens Monday the 16th and is open for 30 days, closing on November 14th at 5 p.m.. The funds are allocated by the General Assembly and are intended to enhance or improve an applicant's quality of life.   01:08:48:05 - 01:09:16:10 Heather Hines Promote their independence and of course their continued residence in their own home or in their family's home. To be eligible, the applicants must be on the DD waivers waiting list, and they also must be living at home or in their family's home. Those are the two main criteria. Now, who can apply is the individual who's on the waitlist themselves or what's called their custodial family member.   01:09:16:11 - 01:09:38:15 Heather Hines I'm not a fan of that term. That's not the most person-centered term, but that's what's in the regulations. So that's why we use it, because I don't want to confuse anyone. And what that means is it can't just be any family member. So it's a family member who has primary authority to make all major decisions affecting the individual and with whom the individual primarily resides.   01:09:38:17 - 01:09:50:18 Heather Hines That's just to be clear, those are the only two people that can apply is the person or their custodial  family member. I can tell you a lot more about it, but that's the gist of what the program is.   01:09:50:20 - 01:10:13:20 Erin Croyle So I want to talk about the application process for the IFSP and for funding. In the past it was a first come, first serve basis, which, if memory serves, could be a really chaotic 24 hours for applicants and plus the lead up time to that deadline. You know, it was really stressful just getting online and having poor Internet or Internet lag.   01:10:14:00 - 01:10:25:20 Erin Croyle It could be messy, but that's over now, right. And now it's a combination of priority and lottery. I know this can be complicated to explain, but can you give us the basics about these changes?   01:10:25:20 - 01:10:49:10 Heather Hines SURE. So now what we're doing is basing how we distribute the funds on urgency of need or what's called risk of institutionalization. So you mentioned earlier when you were describing what a waiver is. Again, it's waiving someone's rights to an institution. That's where that language comes in, is we want to make sure that it's going to the people with the highest level of need.   01:10:49:12 - 01:11:10:07 Heather Hines And again, yes, we wanted to make sure that everyone had access to it so that it is fairly distributed. And when it was first come, first serve and may have unfairly benefited people who were already more connected to resources and easy access to a computer, for example. And so we wanted to make sure that everyone had the same access.   01:11:10:07 - 01:11:32:00 Heather Hines And so that's why it runs for 30 days. So everybody has time to get the information, to find out about it and to get to a computer and be able to apply and get the support they need to be able to apply amounts that applicants can request now is based on a funding category. The funding categories are based on each individual's priority status on the waitlist.   01:11:32:00 - 01:11:57:23 Heather Hines So go to the CSB, get on the waitlist. When you meet with the case manager or the intake staff, they do some assessments based on a bunch of questions that they ask. They find that you need a certain priority criteria. So there's probably one, two and three are you. One is the highest level of needs. That's the folks that have the most complex needs and what we would consider the most at risk.   01:11:58:00 - 01:12:19:16 Heather Hines Those individuals are the top priority for the funding as well. So they're the top priority in order to get a waiver. So they're top there on the waiting list and they're also top priority for getting the IFSP funding. That is the annual funding. If they apply, 50% of the funding goes to those on priority one. The way we determine who gets it is based on their critical needs summary Score. Again, that's something that's common with your CSB staff case manager and they ask questions on the form and there's a score attached to each person that tells how urgent their needs are within that priority one category. Funding approval is given to individuals and priority one who are most at risk of institutional elevation. As I said, highest level of need indicated by that critical needs summary score.   01:12:49:23 - 01:13:18:07 Heather Hines So funds will be awarded to those with the highest critical need. Summary score. Until there's no funding left for that category. Families don't need to know what their score is before they apply. We have access to all of that information. They do need to be staying in touch with the CSB, with their case manager, if they have one, to make sure that their information is current and accurate in the system, because that's where we get the information when we're making our determinations for funding.   01:13:18:09 - 01:13:43:18 Heather Hines We'll stay in touch with that case manager. So something changes in your life. They know what it is and they can update your priority. So maybe you should be priority one, but you forgot to tell them that a primary caregiver had a new situation. And maybe something really critical has changed for that person. So then for priority two and three, it's done a little differently for people that are on the waitlist and have a priority two or three status.   01:13:43:20 - 01:14:06:02 Heather Hines Funding is given randomly to those applicants. So it's like a lottery system; this many people for priority two and three have applied for funding and then it's basically randomized because not even Rhonda or I that do it, someone gives us numbers and names attached to those and it's totally random. So we give funds to those people until we run out for that.   01:14:06:04 - 01:14:30:11 Heather Hines One thing to note, though, is that if you have a priority two or three status and did receive funding during the last funding cycle, you can still apply this time. But we're awarding funding first to those in priority two or three who did not receive funding during the last cycle. If there is funding left, then those who received funding last cycle will be considered again.   01:14:30:12 - 01:14:50:12 Heather Hines That's to make sure everybody has a chance. Over the three years I didn't get the randomization last time. Maybe I'll be more likely to get it this time. We want as many families as possible to have access to the funding. We want those with the highest level of needs to have access. So this is our way of trying to do all of that with a limited amount of funds.   01:14:50:14 - 01:15:19:18 Erin Croyle That's really helpful. And I just want to also say when you're reaching out to your community services boards, if it's something you haven't done before, just know that they're regional, county, city based and sometimes you really have to go through a phone tree to get to someone who knows about waivers and programs. So be patient. And again, if you need help, you know, see if I can help you navigate getting through to your CSB, because depending on where you live, it can be a complex process until you get to someone who knows what you're talking about.   01:15:19:20 - 01:15:34:20 Erin Croyle I want to know how many families are able to get some financial relief from this program if we're talking 14,000 on a waiting list. How many do you see apply typically? And then how many do actually get funds and how much money are you talking here?   01:15:34:22 - 01:16:12:15 Heather Hines The total amount available, this funding period, as well as back in January, February, each time it's been $2.5 million. So that's the total. During the winter of 2023, applications were submitted for every $3 million. We could only award 2.5 million, but that meant that we were able to approve 3770 applications. So that's 3770 individuals or families that received funds, almost 4000 people, which is great, but obviously not close to 14,000, as you said.   01:16:12:17 - 01:16:39:06 Heather Hines But with limited funds, it's good to see that many people getting something. We expect that number to be about the same this fall since we again have 2.5 million and the amounts for priority have not changed. So we are thinking, let's see, last time the total number of people that applied was 4914, as I said. And then the number that were approved was 3770.   01:16:39:06 - 01:16:59:23 Heather Hines So that 77% of people who applied were able to receive funds. If we get more applications this year, which it's looking like it might, the percentage will be lower. But we would think that the total number would be about the same. Getting close to 4000 individuals or families would get funding.   01:17:00:00 - 01:17:04:06 Erin Croyle How much money do families typically get when they apply?   01:17:04:07 - 01:17:21:22 Heather Hines If they're on priority two and three? They couldn't get more than 500. So you can ask for less than 500, but you can't get more than 500. Then for priority one is 1000. You can't get more than 1000, but you could get less if you ask for less than we had people that have asked for half of that.   01:17:21:22 - 01:17:33:22 Heather Hines But typically most people, when you look at the types of things that you can apply for, usually there are several items that people add together to make up to get up to that 1000 or to that 500.   01:17:33:24 - 01:17:46:15 Erin Croyle Well, let's talk about what they apply for. These funds are meant to help individuals and their families dealing with complex needs and that are at risk for long term care. So what do people tend to use the money for?   01:17:46:17 - 01:18:09:13 Heather Hines Like we were just talking about $500, 1000. It is not life-changing. We recognize that in terms of addressing complex needs, it's not a lot, but it does provide a certain level of financial relief for families to obtain items or services that at least help in the short term or some life stability or to get the basic need met.   01:18:09:14 - 01:18:37:14 Heather Hines The categories that the funding is allowed to cover are improved health outcomes so that something like therapies, medication and co-pays that are not covered by insurance. This funding cannot be used for anything if there is another funding source that covers it. So if you have a CCC plus waiver and it covers the service, you can't then use that IFSP funding for that.   01:18:37:14 - 01:19:04:08 Heather Hines That's one of the rules and regulations. So again, improved health outcomes on that covers therapies, medications and co-pays that aren't covered by insurance, communication devices, even something like dental care. There's a whole list of items and services that are allowable under that category, and that's going to be something you can get really detailed information about in our guidelines, which you're going to link to that in the notes.   01:19:04:10 - 01:19:44:09 Heather Hines They're safe living categories, so that's anything to help the person stay safe in their home, such as furniture, handrails, appliances, ramps, stairlifts. There's again, a long list of items under that. Those are just a few examples. Community integration, that's the third category. So something to help someone be part of their community covers a lot of different things like companion services, transportation services, recreational opportunities, even modifications to a vehicle so that someone can go into their community and participate in the world.   01:19:44:11 - 01:20:18:16 Heather Hines There's a lot of different options under there. Another thing about funding, we have multiple tools to help people with the application process. We want to make sure that when you go on to apply, you have everything you need to make it go smoothly and make it go quickly. On our My Life, My Community Resources Funding Page, we have a two page quick reference guide a video tutorial, a full user guide, a list of frequently asked questions and answers, all to help families to get the help that they need.   01:20:18:16 - 01:20:22:06 Heather Hines And several of those documents are also available in Spanish.   01:20:22:08 - 01:20:46:14 Erin Croyle Before we move forward, I do want to clarify, because I'm not sure if I said or you said; and it's so confusing for everyone. You can have the CCC plus waiver while you're on the DD waiver waitlist. And it's actually a good thing to apply for because that would then give you Medicaid, which can help with the co-pays. And it sounds like most of the funds that people apply for are those things that they would get if they had the DD waiver.   01:20:46:14 - 01:20:58:00 Erin Croyle So environmental modifications, adaptive tools and support with with respite and all sorts of things that are why people are looking for the DD waiver.   01:20:58:02 - 01:21:01:09 Heather Hines Right. Exactly. Really good point.   01:21:01:11 - 01:21:27:21 Erin Croyle The other thing I want to point out is that the job that you do, I may be projecting here, but I feel like you care deeply. Anyone who thinks like this isn't enough money or why can't we serve more people? Nobody here on this podcast can do much about that. But if you connect with The Arc of Virginia, they actually do advocacy work and have a day where they go and see the General Assembly in the early parts of it's usually January, February.   01:21:27:23 - 01:21:49:03 Erin Croyle So that's where you advocate to try to change this. You know, the people here are just doing the work, but if you want to help change things and move them along, I highly recommend connecting with The Arc of Virginia and they always want more voices to speak to our legislators to help them understand how important funding these initiatives are.   01:21:49:05 - 01:22:04:10 Erin Croyle Let's talk about the data breach in 2019 and then again in 2021. There was a data breach on the IFSP portals where parents were applying and individuals were applying. What's being done to ensure that that doesn't happen again?   01:22:04:12 - 01:22:33:07 Heather Hines A data breach did occur. Those two years. Rhonda and I joined the team last summer and we've been part of the course correction and that has been to use a trusted and reliable application portal. Some people may have heard of WAM. It's also called the waiver management System. That is a system that has already been used by the Department of Behavioral Health and Developmental Services.   01:22:33:09 - 01:23:04:18 Heather Hines It's the same place that people on the DDwaivers waitlist go for their annual forms that they need to fill out. If someone is on the DD waivers waiting list, then they may already know about this spot of the waitlist portal or the IFSP portal. The funding portal is what was developed in preparation for the January and February funding programs. A lot of work was done to prevent future issues.   01:23:04:20 - 01:23:34:06 Heather Hines That were experienced in previous years. There was lots of testing and that was internal testing within the department is also testing with the vendor who we worked with on the WAM system. Over 4000 people applied using that system in January, in February, and there was zero breaches of protected information. So we've had a successful year and our team is available throughout the application process, along with the My life, my community call center staff to troubleshoot and resolve errors. Any time people were applying and had questions that way, everyone had a successful opportunity to get the application submitted. Again, with this launch, the cycle has had no breaches and we're hearing from applicants that they can submit their applications in under 5 minutes. We're hearing from our partners at my life, my community.   01:24:00:19 - 01:24:28:17 Heather Hines Yes, people are calling with some questions here or there, but overall, it's going really smoothly for folks. And we're looking, always looking, to learn more about what's working and not working. So each year that we can continue to enhance the process for everyone and make it easier for people to apply because we want everyone to have an opportunity and we don't want glitches or anything like that to get in the way for this important funding, even though, as you said, people would love for it to be more.   01:24:28:17 - 01:24:46:06 Heather Hines And that's not something that we have control over on this podcast, the three of us. But what we do have control over is trying to make it, make it work and make it work for people to be able to apply easily. So we've been working really, really hard on that and we hope that is felt by people when they complete the application we've mentioned.   01:24:46:06 - 01:24:59:04 Erin Croyle We're going to put all sorts of links in the shownotes, including your FAQ page, but while you're here, what's a couple of frequently asked questions that are the most important things folks should know about?   01:24:59:06 - 01:25:31:18 Rhonda Gaines Well, Erin, outcome in and answer to that question, again, thank you for having Heather and I here today to share information. Some of the most frequently answered questions a comprehensive guide can be found at the My Life My Community website, under Resources for Family, under funding. So I'll just mention a few just for quick reference. A lot of people want to know how long it takes before a funding decision is reached after they submit their application.   01:25:31:20 - 01:26:01:21 Rhonda Gaines In general, once funding closes, we reach out and notify applicants of an award decision within 1 to 2 months. That's after screening and making decisions for those who apply. When you receive an approval for funding or you receive a denial of funding, those decisions will come to the email address that is listed on the application. So you will know one way or the other.   01:26:01:23 - 01:26:41:02 Rhonda Gaines Another question is asked, I need the IFSP application translated into another language. Currently, the IFSP funding portal in WAM has a Spanish translation function. You can see our user guide, again, on the My Life My Community IFC Funding page for instructions on how to translate the application. Another question: Who can help me complete my application? So if you need assistance, you can reach out to your Community Services Board, the assigned support coordinator or intake specialist.   01:26:41:04 - 01:27:07:05 Rhonda Gaines You can get assistance from IFSP utilizing the funding FAQs. You can also access a trusted family or friend to help you apply for funding. We also have a quick reference guide on the My Life My Community web page, under funding. It's a quick seven, eight step guide to get you through the funding process in the most efficient way.   01:27:07:07 - 01:27:35:19 Rhonda Gaines Another question: Can I be reimbursed for things I have already paid for before my award notification was received? Unfortunately, you cannot be reimbursed for items that were previously purchased before you received the funding award. All purchases must take place after the card or the funding is received. I live in a rural area and my wife Fi is unreliable.   01:27:35:21 - 01:28:08:11 Rhonda Gaines I do not have a computer. How can I apply? Is there someone who can help me? All applications currently must be submitted online. In addition to using a computer, now you can complete the application using a smartphone, phone, or a tablet. If you do not have access to any of these devices. Please consider accessing using a computer at a local public library. So that information is general to everyone in the city or county that you live.   01:28:08:13 - 01:28:36:22 Rhonda Gaines And you can access those devices for free. What do I do with my receipt after purchase? Recipients should hold on to receipts for three years. Keep them in your personal records. Don't send them to IFSP. However, be prepared to provide them upon request as part of our ongoing quality improvement process, IFSP may contact recipients to learn more about how they utilize the funds.   01:28:36:24 - 01:29:00:15 Heather Hines And I will jump in real quick to add. Rhonda, you mentioned using the different browsers and mobile. Our vendors made some improvements to the use of the application on a mobile device, but we got to admit it is a little tricky. It's not as user friendly as we'd like it to be. And so you can physically do it on a mobile phone.   01:29:00:15 - 01:29:21:04 Heather Hines But we really recommend using a laptop or tablet just because of the quirkiness of it on the mobile devices. And we have had people that have used their phone to do it, but it's a lot of pinching and resizing things. And so it's not as simple as just saying, Hey, make it available on mobile phone. It costs funds to do that.   01:29:21:06 - 01:29:26:08 Heather Hines We're just wanted to be clear that it's better on the laptop.   01:29:26:10 - 01:29:32:20 Erin Croyle Yeah. And I love Rhonda that you reminded us to use our libraries. It's a resource I think we forget about sometimes.   01:29:32:22 - 01:29:33:24 Rhonda Gaines Absolutely.   01:29:34:01 - 01:29:44:03 Erin Croyle I think it's really exciting that you've started regional and state IFSP Councils. Rhonda, can you explain what these are and how people can get involved?     01:29:45:01 - 01:30:17:00 Rhonda Gaines Sure. This is near and dear to my heart because of course this is the coordination that I provide. Our state and regional councils are a coalition of members and they work collaboratively to build on existing community connections and resources in Virginia. They help to identify service gaps and we make resources, services and support available to individuals and families who are on the waitlist and the community at large.   01:30:17:01 - 01:30:52:14 Rhonda Gaines So that information is shared during our council meetings and on our social media platform. IFSP administers the council component and we also facilitate the work of the Council. We all come together to educate, inform, and encourage our community. I'll make the distinction between what State Council does and what regional council activities are. For State Council, again, they are representative of the five service regions across Virginia.   01:30:52:18 - 01:31:30:22 Rhonda Gaines They all volunteer their time. There is at least one member for each region and those regions are region one is considered Western, region two Northern, Region three south Western, region four Central Virginia, and Region five is Eastern Virginia. Some of the things I do is that they serve as an advisory board to IFSP. They provide feedback on the state goals in an effort to focus on the immediate needs of resources for those who are on the waitlist.   01:31:30:24 - 01:32:00:17 Rhonda Gaines They provide oversight towards progress planning goals. We have some very talented people on our council, so they utilize their gifts, their professional gifts, their personal gifts, their lived experience gifts, and they help us when we're developing questions for survey data. They give us feedback on how certain information is presented in terms of how is it presented in the best language for the community at large.   01:32:00:23 - 01:32:47:07 Rhonda Gaines Their insight to some of the work we do is very critical and some things we just need a different eye before we put the information out to the community at large. They suggest operational enhancements for the current funding component. A lot of our members are also parents. They're individuals with lived experience and they may also apply for funding and they give us their feedback in terms of what that experience was like for them.  And we've actually used their feedback and the public in general, their feedback through our surveys to make some of the enhancements that we have in place this year for this current funding cycle.   01:32:47:09 - 01:33:20:08 Rhonda Gaines DBHDS Staff, along with Virginia Commonwealth University, RNCS ( regional network coordinators) and the Council. Together we recruit, screen and select new council members and we're in the process of starting that now with beginning the application process. And through the end of November, we will screen interview and make our selections for the beginning of 2024. The State Council has four annual meetings.   01:33:20:10 - 01:34:02:07 Rhonda Gaines AppointeeS serve a one year voluntary term reappointment is allowed for a maximum of three terms. So that's all for State Council. Our IFSP Regional Council Leadership Board, they are representatives of five regions across Virginia and they volunteer their time as well. There are at least four members for each of the regions, which I have stated previously. Western, northern, southwestern, central and eastern. The Regional Council operate a little bit different in that they work at a grassroots level to improve the supports in their community.   01:34:02:07 - 01:34:50:09 Rhonda Gaines They come together to identify, develop and coordinate important educational presentations to the community.  And some that we've had this year has been on health care advocacy, disparities and in equities that individuals may face and their families when they go in for health care and emergency care and when they're hospitalized. We have presentations and they give us really good tools, information for family to access so that they can become better advocates for themselves and so that families can also advocate in a better way for the individual. Members, they live in, the localities that they're serving. As part of the makeup and for full representation of our council's,    01:34:50:10 - 01:35:19:05 Rhonda Gaines we have a person who must be a self advocate so that we can always have their perspective, family members, so that we can have their perspectives. Caregivers, community professionals and even providers can be part of our council. The council serves a one year term and reappointment is allowed.  So there are currently no restrictions on the number of terms.  I FSP Council, they work closely in partnership with Virginia Commonwealth University, Center for Family Involvement. Their respective regional network coordinators from CFI are available to help facilitate the activities of council and support in planning and implementation of meetings and events. So our ences work closely with Council to identify and make available resources to their communities via social media. So each region has a Facebook social media page and that's where we primarily share resources.   01:35:54:17 - 01:36:28:08 Rhonda Gaines We share current resources, we share new resources, we share unique resources to that particular region, trying to close a service gap need. They make contact with organizations in trying to develop partnerships and sharing resources and coming together where some of the presentations that we do also direct marketing to other agencies. The RNCS also help council work together to comprise monthly reports and quarterly reports on the progress of council activities.   01:36:28:08 - 01:36:58:07 Rhonda Gaines So we get an opportunity from their perspective to see where they are currently and how they're performing as a council towards meeting our state planning goals and then make recommendations in terms of where they'd like to go next. What is the future planning for state and regional councils? So currently IFSP is recruiting and if anyone is interested, please email us and Erin   01:36:58:07 - 01:37:19:21 Rhonda Gaines you can also include this in your links, but I will state in case someone is listening and want to write it down immediately. It is I-F-S-P community spelled out so it is c-o-m-m-u-n-i-t-y  at D-B-H-D-S dot Virginia spelled out dot G-O-V.   01:37:19:23 - 01:37:35:21 Erin Croyle Rhonda I love hearing about this. It's so important. You know, we always hear representation matters and you have this rich, diverse mix of people on these councils. I am so curious, a couple of the specific bits of feedback that you're getting from these councils.   01:37:35:23 - 01:38:08:02 Rhonda Gaines The most beautiful thing about our council members is their passion and dedication as a whole. They're genuinely interested in being part of something that can make a difference, even if it's just to one person or a family's life. They offer and share their perspective, their lived experience, triumphs and challenges of everyday living for someone with a disability diagnosis, and that helps them help other people.   01:38:08:04 - 01:38:54:10 Rhonda Gaines As self advocates, families who support these are the people that are comprised of our council. They could be a caregiver or professional advising on how to navigate services system. All of these people are critical sources of information and they can help someone who may be feeling like they're on an island and they're not sure what to do. So their feedback and the work that we do is incredibly important for us moving forward and coming up with new ways as much as we can to provide the best services to people who are currently on the waitlist.   01:38:54:12 - 01:39:26:15 Rhonda Gaines Sometimes we get focused on major issues of government, which can take a lot of time to improve our community services systems. But individual schools and their families, they're just concerned about getting through daily challenges. They want to be included. They want good medical treatment, access to employment, education.  And our council, They are resources to help some of those people kind of find their way.   01:39:26:17 - 01:39:53:21 Rhonda Gaines Their mere presence in our service component speaks volumes and adds to the legitimacy of what we're doing. Some of those in the community who participate in our meetings, be educational presentations, they join in on conversations. They seem to feel inspired and reassured that they can find a way to make things better for themselves and for their loved ones.   01:39:54:01 - 01:40:15:07 Rhonda Gaines So the feedback that we receive from councils, the information that they can extend to the community, seems to be the major point of this whole component of what we're working with and what we're offering to the community.   01:40:15:09 - 01:40:45:06 Erin Croyle Yeah, you know, time and time again, one person's experience, it may seem selfish to share it, but so many other people are going through it that if you can help fix it for one person, we know how to fix it for multiple people. I bet it's so beneficial in so many ways. Absolutely. Right. And the fact that you're connected both to CFI and other things, I'm sure some of the issues that might not have to do with IFSP get put up to whoever might be able to help with it.   01:40:45:06 - 01:40:46:21 Erin Croyle Do you experience that at all?   01:40:46:23 - 01:41:20:12 Rhonda Gaines Oh, absolutely. Our council is made up of professionals with a lot of the organizations that we collaborate with, and so we have just this large pool of resources. We can pose a question to our council and someone will say, Hey, I know a person at LEAP or PEATC or the Department of Education, and we can connect with them, or someone sends a question to our support box or to our community box.   01:41:20:14 - 01:41:36:20 Rhonda Gaines We can send that out a particular council member, because on their application we have information in terms of their background, the work that they've done and organizations that they're connected with and it's so easy for us to all of information to help someone.   01:41:36:22 - 01:41:39:19 Erin Croyle I love it. It's just changemakers, right?   01:41:39:21 - 01:41:41:03 Rhonda Gaines Absolutely.   01:41:41:05 - 01:41:52:01 Erin Croyle So anyone interested in this, can you tell us a little bit more about the application process for the councils and also if there's any stipends or reimbursements for travel and child care?   01:41:52:03 - 01:42:27:03 Rhonda Gaines Currently, anyone who's interested in serving on the council and they have the time to commit and a volunteering capacity on state or regional councils may obtain application by emailing us and that email address you can also include in your links. But it's I-F-S-P community spelled out C-O-M-M-U-N-I-T-Y at D-B-H-D-S dot Virginia spelled out dot G-O-V . A member from our IFSP team will respond to your inquiry and tell you more about the application process.   01:42:27:03 - 01:43:11:23 Rhonda Gaines But we're starting now, so we're getting applications ready and we will actively begin recruitment and this will go through November and we expect to have appointments identified the 1st of December so that we can start 2024. Currently, there are no stipends or reimbursements. We're meeting virtually. So it does not require our council at this time to be away from home or find transportation in or have any out-of-pocket expenses currently other than just attending our meetings and communicating through our platforms.   01:43:12:00 - 01:43:21:14 Erin Croyle All the horrors of the pandemic, the one bright light is learning to meet differently. It really, really helps. Participation is so much wider now.   01:43:21:15 - 01:43:22:18 Rhonda Gaines Absolutely.   01:43:22:20 - 01:43:28:04 Erin Croyle Looking to the future. When's the next IFSP funding application period?   01:43:28:06 - 01:44:04:15 Heather Hines Well, we're actually in the middle of it or just began it on Monday, October the 16th. We will be accepting applications for 30 days and that ends on November 14th, 2023 at 5 p.m.. Our goal is to annually have the application portal open in the fall.  So we're thinking around October ish each year. Again, we want to get some feedback from our council on the timing and see what others have to say about if that timing is good for families and individuals.   01:44:04:17 - 01:44:20:17 Heather Hines But right now and in the past it has been in the fall. It just this past year it ended up being early January and February for a variety of reasons. But like I said, our goal is to have it in the fall every year. If that works for people.   01:44:20:19 - 01:44:46:19 Erin Croyle We've got to wrap up here. But before we go, I've got to ask and it's a little strange, but in a dream world, our jobs wouldn't exist. People with disabilities would have the supports they need. There'd be no wait lists. But that's not happening. And we learned today that your job is so much more than just funding. You're looking to support families and hear from families to get them what they need throughout their lives.   01:44:46:21 - 01:44:54:05 Erin Croyle I'm really curious what's your favorite part of the work that you do?   01:44:54:07 - 01:45:22:10 Heather Hines I have a brother with an intellectual disability, so my world has been advocacy for my brother, for people with developmental disabilities since I was born because he's my older brother. So when I found this role last summer, I just thought, Oh my gosh, this is exactly the population that I care so much about. It's not just the individual, but it's their family.   01:45:22:15 - 01:45:42:17 Heather Hines There's all different kinds of families. Some families are really involved. Some families you might not hear from, but like once a year, some people's families have a lot of drama. Some people's families get along great. But no matter what, their family. Professionals are going to come in and out of your life. But your family is always your family.   01:45:42:21 - 01:46:08:08 Heather Hines So we can't provide quality services to an individual without thinking about their family. When we think about person centered services and how important is; family centered services does not mean that we're not focusing on the person. It means we're focusing on the person in the context of their family, in the context of their community, which all of these things are important.   01:46:08:10 - 01:46:33:13 Heather Hines The state government is not going to be able to solve all the problems. And so I'm really passionate about working with individuals and families to help them understand what the government does offer and what is available to them, how to find it so that it doesn't need to be overwhelming so we can do things to make that better for people.   01:46:33:15 - 01:47:14:08 Heather Hines But then also like Rhonda was saying, through the councils, even if we figure out how to get those resources, we still need to not feel alone. We still need to be around other people that we can talk to. We need emotional support, we need community. It's not only about getting that IFSP funding. That's one little thing really, in the grand scheme of things, if the councils continue to grow and strengthen in their coalitions and achieve their goals, that to me means that the quality of life for individuals across Commonwealth will improve because they will know where to go to get information.   01:47:14:10 - 01:47:34:08 Heather Hines They will feel like they have other people that they connect to. They will have access to training, to information. And I just really truly believe in the mission of what our vision is all about, what our team is all about. And so it's really nice to be part of a team where, as you can see, Rhonda cares greatly as well.   01:47:34:10 - 01:47:55:09 Heather Hines We have a communications and program coordinator who is also very passionate and knowledgeable. Between the three of us. It's just been a wonderful experience. I'm just excited to see Virginia come together. Different agencies across the state, different organizations who are all focused on not only this, the individual, but their family making life just a little bit better.   01:47:55:11 - 01:48:17:13 Rhonda Gaines My passion, it must just be a part of my makeup because my desire to care for other people. It started at a very young age and I used to get in trouble because I would take my things and give it to other people that needed things. You know, my my parents would like, you know, why are you giving your stuff away?   01:48:17:13 - 01:48:40:11 Rhonda Gaines My answer was like, Well, because I know I can get more, I can get other things, and I don't know if that person can get another coat or a scarf or whatever. That was kind of I think the foundation in elementary school, you know, and to care about other people, it's just very personal to me. I'm very sensitive about that.   01:48:40:11 - 01:49:31:07 Rhonda Gaines And I am very affected when a certain group or class of people are marginalized and treated, I just want to do something about it. And this field Community Services has been a great vehicle for me to be able to express that in many ways, whether it was direct care or quality assurance or data review. And now in the role of community coordination and working with the councils on the other side of those who are waiting for slots, which can be a very frustrating period of time.  You kind of identify what is it that you can do within your capacity, within your team, within your division, within your agency to try to make a difference for other   01:49:31:07 - 01:50:12:07 Rhonda Gaines people. That's what me, the council and the RNCs - we're working to try to figure out the best way within our power and our capacity to help those who are on the waitlist, who may be incredibly frustrated and at times giving up. And usually if you can provide one thing to give relief there and there's hope that they can keep moving through the process, you know, not just stopping.   01:50:12:09 - 01:50:40:13 Rhonda Gaines Yes, it's work and it's employment, but it's also a passion for me. I don't have children, but I do have two nieces who are on the autism spectrum, and I have a nephew who is on the autism spectrum. And I am quite the advocate at when it comes to services that they need within their educational systems. And I help my brother and my sister.   01:50:40:15 - 01:51:06:05 Rhonda Gaines I guide them with trying to navigate their systems in Kentucky and in Michigan. Unfortunately, all services are not created equal, you know, state to state. But the information I do provide them gives them a certain level of empowerment to advocate at a very high level for their children. And that I feel good about. IFSP in all any of the work I've done in the past.   01:51:06:05 - 01:51:20:09 Rhonda Gaines And what I'm doing currently is generated on a passion to do so.  And want things to do better. Kind of within my little my little power circle, you know?   01:51:20:11 - 01:51:40:05 Erin Croyle Oh my gosh. I mean, both of you, I just I kind of have chills because a lot of times families get in this process and a lot of people that we come across, they don't really have lived experience. They can clock out at the end of the day. And it just doesn't feel like they truly understand. And hearing both of your stories, you do get it.   01:51:40:05 - 01:51:58:24 Erin Croyle You know what we're going through and you understand the hardships and how 500 hundred bucks isn't much at all, but it helps. But also, if we do not have a waitlist anymore and we don't need the application for these funds, you all still have a lot of work to do and I am so glad you're doing it.   01:51:59:01 - 01:51:59:21 Rhonda Gaines Thank you.   01:51:59:23 - 01:52:01:11 Heather Hines Thank you.   01:52:01:13 - 01:52:29:02 Erin Croyle Thank you. And thank you listeners for joining us. Waivers can be a complicated process. Let us know what questions you have and what you might want to learn more about in future episodes. And while you're at it, please rate review and share. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.    

The wishes, hopes, and dreams of expectant parents are many.  Their baby having a lifelong disability usually is not one of them.  When that happens, it can be devastating for families.  The staff and volunteers at the  Center for Family Involvement have family members with a disability. Some of us have disabilities. That lived experience makes a huge difference when providing emotional and informational support to people with disabilities and their families. We understand how complicated the mix of grief, joy, disappointment, and gratitude can be. So does Heather Trammell. She's the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago.  She helps parents through the wide range of emotions that flood them after they learn of their child's diagnosis. Heather also sees time and time again, families coming out of the dense fog of grief bursting with pride and happiness.  In this two-part interview, Heather shares how her job has evolved with the rapidly changing media landscape and talks about how toxic the high-functioning/low-functioning mindset can be.    The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.    TRANSCRIPT: 01:00:07:18 - 01:00:36:07 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle the creator and host.  The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:36:09 - 01:00:59:17 Erin Croyle This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff, too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down's syndrome. And how the medical team broke the news to her is both shocking and heartbreaking.   01:00:59:19 - 01:01:26:21 Erin Croyle After the dust settled, Heather became the director of Family Support at the Down's Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastically different families handle diagnoses. She also witnesses countless transformations from scared, sad and confused to happy, fulfilled and proud.   01:01:26:23 - 01:01:47:15 Erin Croyle Heather's love for her work is palpable. She's the first one to tell you that she's a sucker for a changed life. Heather, I want to jump right in and have you tell us a bit about yourself. But I like to do this a little bit differently because I think a lot of us are one person before children and then another after.   01:01:47:19 - 01:02:04:06 Erin Croyle And for us parents who have a child with a disability, that change is a lot more drastic in advocates like you. To me, it's like a superhero origin story, frankly. So can you tell me who you were before children and who you are now and how your daughter's transformed you?   01:02:04:08 - 01:02:32:15 Heather Trammell Well, I wouldn't call myself a superstar or anything. Thank you so much for having me on the podcast. Erin, it's a pleasure to be with you. It's great to chat with you about any subject at all. So I had my first child when I was 35, so there was a lot of Heather before that. And I actually do believe that everything that came before that diagnosis informs that moment.   01:02:32:17 - 01:02:55:09 Heather Trammell So the moment you hear your child has Down syndrome, that's that's a moment in time. But how you feel about that moment had everything to do with all the years before that. I grew up in a small town in Michigan, and two of the things that are significant about my younger years was that I was born with a cleft lip and cleft palate that was continually under construction.   01:02:55:09 - 01:03:25:00 Heather Trammell Now these days, children with cleft lip and cleft palate have this space age remarkable surgery, and it's all done by the time they're in kindergarten. But mine went all the way through college, and so I was just kind of a work in progress, so to speak, as far as my face goes. And so I had to, you know, go to school with surgical scars, lips not applying the right way, nose not allowing the right way speech difficulties.   01:03:25:06 - 01:04:00:10 Heather Trammell And that was really hard. That was hard. Kids are not always very forgiving about that kind of thing. Also, at the same time, I grew up with a bipolar parent who also struggled with her mental health, was sometimes compliant with medication therapy, sometimes not. And the times that were not were very difficult for us. So those two things, I think, are what came crashing to my mind when I heard that my unborn child was going to have Down's Syndrome.   01:04:00:12 - 01:04:26:20 Heather Trammell Then we got that chip off, the ultrasound chip off the day before 911. And I thought September 10th, 2011 couldn't be the worst day of anybody's life. It certainly was the worst day of mine. And then September 11th happened, really, and the whole world was falling apart. I thought, you know, that is that one of the hardest things that's ever happened for me?   01:04:26:22 - 01:04:54:00 Heather Trammell And now I am sure that the second half of my life is probably going to be as difficult as the first. I really had it in my mind that I was happily married. We were expecting our first child. It was all going to be great from now on because I had already checked the box on the hard stuff and I got through it and I grew from it.   01:04:54:02 - 01:05:20:07 Heather Trammell Good. Let's just move on. But that was the first thing that came to my mind when we got that diagnosis. That was a prenatal diagnosis. It was pretty early. It was early enough to have amnio. So the noninvasive prenatal screenings were not terribly were either weren't available or they weren't terribly good back then. So if you're really wanting to know, then get an amnio.   01:05:20:09 - 01:05:53:07 Heather Trammell And we felt like that was worth getting. So we got it. And I had in my recollection, I could be wrong here, but my recollection was I had asked my doctor not to share that news with me during the work day. He had called me with the ultrasound information on September 10th, during the work day, I had a very hard time keeping my brain together in the very busy Georgetown law firm where I worked.   01:05:53:09 - 01:06:18:10 Heather Trammell And so I thought, Let's not do that again. Don't call me at the office. But either I did not tell him that or he forgot because he did call me with the amnio results at the office and I was speechless. Of course, breath taken away and he said, I'd like you to come to my office right away. I stumbled and said, Well, what about Thursday?   01:06:18:12 - 01:06:44:21 Heather Trammell He said, Well, no, I mean, now I'll clear my calendar. Come right now. And I'm like, okay. So I took leave of my colleagues. I stomped my way back up the sidewalk the way I had just come down a half an hour earlier. And it was one of those beautiful October days where the sun is shining. It's not hot anymore.   01:06:44:23 - 01:07:11:17 Heather Trammell You fall is starting to show. It was just gorgeous. And I thought to myself, How dare the sun be shining today? This is really this is not good. And then I got on the train, the subway, which in Washington, D.C., from the north part of Washington, D.C., down to Virginia, you have to pass by the Pentagon station, which at that time was completely closed.   01:07:11:17 - 01:07:37:10 Heather Trammell Then you could still smell the smoke from the Pentagon attack as you passed by. So my mood did not get better all the way at the office. So my my husband and I met at the train station. We went to his office. He sat across his big oak desk with a very serious expression on his face. He didn't say anything like nothing at all.   01:07:37:12 - 01:08:02:03 Heather Trammell We weren't sure what to say either, so we. We just picked things out of the air where we weren't even sure what to ask. We said so is the baby okay? He said, Well, we're going to get a level two ultrasound. Here's your prescription, and that'll tell us more. Great. Am I okay? He said, Oh, you know, your health is good.   01:08:02:03 - 01:08:32:05 Heather Trammell This will not affect your health. Good. And then we're still fishing for things to say. We said, Well, so is it a girl or a boy? And he shuffled some papers and he said, it's female. And in my mind now, my husband is much more generous and thoughtful than I am. But in my mind he had just reduced my unborn child to a tadpole experiment.   01:08:32:07 - 01:09:01:20 Heather Trammell And I thought that was just it was really unreasonable of him medically. Yes, he's right. Female ex-wife. Got your exit? Sorry. Got it. But we were having a girl or a boy. I'm not giving birth to a thing. Giving birth to a real person so we could leave of his office. He didn't give us any other information. No books to read, websites to consult people to talk to.   01:09:01:22 - 01:09:29:23 Heather Trammell That was either because he forgot he didn't know or I'm not sure why he didn't, but or he maybe he expected the maternal fetal medicine people to do that. Whatever his reason was. We spent the rest of the day deciding on a name for our little girl because she was no longer going to be known as the baby or the problem when she was our little girl and she had to have a name.   01:09:30:00 - 01:09:55:03 Heather Trammell So we we named her Elizabeth. And that very moment, she was going to be Beth forever. So we went on with the rest of our pregnancy many days. I woke up in the morning after a nice night's sleep. You know, when you wake up in the morning and you've had a good night's sleep and you feel, ah, you just have that feeling like you have you have done well.   01:09:55:05 - 01:10:22:23 Heather Trammell And then I remembered my situation and then the bottom fell out of my stomach, like kind of every morning. So that was really, really difficult. One of the things I did during that time and in retrospect I would say it was somewhat self preservation. Self preservation being I didn't want to tell other people about our news. I really didn't want to hear what sweet children they were, how God.   01:10:22:23 - 01:10:53:01 Heather Trammell When we give special children to special parents or whatever, I might have thought I was going to hear and threatened my husband with certain death if he told anybody. But we did have lunch with a college buddy of mine and his wife. For some reason I just felt really comfortable with them and I told them our news over dinner and the next day she introduced me via email to somebody she worked with at the middle school where she was a teacher.   01:10:53:03 - 01:11:19:02 Heather Trammell This woman was a special educator at the middle school, and I thought to myself, Well, if we're having a baby with Down's syndrome, I am going to be the best prepared parent known to the free world. And so, yes, I think I had better learn about this special ed thing now. I prepared a whole list of notes, you know, and I went to a sit down with this lady at her home.   01:11:19:04 - 01:11:50:02 Heather Trammell Her family was out of town for a family event. I sat in her living room with my cookies and my orange juice, and I opened up my notebook of my voluminous notes. I was ready. I was not going to waste this woman's time. The first thing out of her mouth was, So tell me your story. And you know what, Erin, we can talk about, especially for the next 4 hours, we can talk about special ed at all.   01:11:50:04 - 01:12:12:19 Heather Trammell We talked about how I was feeling, what I was thinking, what I was excited about, what I was scared about, questions I could ask and get answered for hours. The sun went down and I never ask a single special ed question the entire afternoon because what I really needed was to be heard and to be heard in my heart and soul.   01:12:12:21 - 01:12:34:24 Heather Trammell Eventually, I found out everything I need to know about special ed and more that I didn't want to know about special. You get me, right, Erin? Oh, yeah. So we ended our conversation, and on my way back to the car, I thought to myself, You know, if the world of disability is filled with cool people like her, I think I'm going to like it here.   01:12:35:01 - 01:13:02:11 Heather Trammell And I was right. There's lots of cool people out there like her. And I met them. You are one of them and many others. So I've met some wonderful people in the land of disability. And I think that really started me also on the path of yet another career turn in the road. I swear my resume looks like a meandering silver thread.   01:13:02:13 - 01:13:26:15 Heather Trammell Mm. So I was a music major in college. I was a concert promoter and a booking agent. After I was in college. Then I was a paralegal, and then I was a non-lawyer support professional. And then I was a parent support professional because that's what I just really made a difference to me. How that woman helped me. I wanted to be that kind of help to other people, too.   01:13:26:17 - 01:13:44:15 Heather Trammell And I had already had a little bit of training in that kind of thing, so I was glad to pick up the mantle of leadership in that way. That was 20 years ago, if you can believe it. Like 20 years. This very year I have been serving parents and I've loved every minute of it.   01:13:44:17 - 01:13:46:05 Erin Croyle And you are so good at it.   01:13:46:06 - 01:13:52:03 Heather Trammell Oh, thank you. You're welcome. I even got myself a little 20 European from Amazon.   01:13:52:05 - 01:13:54:12 Erin Croyle As you should. Someone should have done that.   01:13:54:14 - 01:13:55:02 Heather Trammell Oh.   01:13:55:04 - 01:14:08:23 Erin Croyle My goodness. So when you moved on to that role, did that role exist? Did you create it? Tell me a little bit about what you do, but also how you started doing that.   01:14:09:00 - 01:14:37:22 Heather Trammell Sure. Yes. The role did exist before I got there, and the role had been held by several people before me. People who were at that time legends in their own time. When I took over that mantle of leadership, I had a small group of volunteers that were open to be ing, volunteer, mentor parents. And so I thought, Well, I will call all these people and introduce myself that I'm the new director of Family Support and just wanting to introduce myself.   01:14:37:24 - 01:15:00:08 Heather Trammell And every time I probably could, 80% of them said, Oh, wow, that's really nice. Warm welcome. It's nice to meet you. Oh, you know, Amy, I love Amy. She's just the best. She was there when my little boy was born. And I thought to myself, Oh, my. What kind of shoes are my stepping into? I was a little bit.   01:15:00:08 - 01:15:27:02 Heather Trammell And I was excited, but a little bit intimidating. Right. One of the things that was really instructive to me at that time was that I was noticing so many parents at that time. Now we're talking this is 2003. We're not getting in touch with our organization until their babies were six months old. And I thought, Oh, well, that's just really shouldn't they have gotten in touch with us earlier?   01:15:27:03 - 01:15:55:00 Heather Trammell I mean, not everybody had great Internet access at that time. Our website at that time was really not that good. It wasn't verifiable. So, of course, I mean, maybe people just didn't know about it. So I went to the director of the organization at that time and I said, Hey, what is up with this? Why do people not call us until like six, nine months after their babies are born?   01:15:55:02 - 01:16:21:02 Heather Trammell She said, you know, I think I wouldn't worry about that so much as what I would focus on is you go make this the best it it can be. You be the best you can be so that when they call and they will, that you are there for them being the best and giving the best that you have for them.   01:16:21:04 - 01:16:44:20 Heather Trammell And I took that as my marching orders. I did a little bit of revamp to that program. I was glad to get tremendous advice from other parent support directors around the country and learned a lot from them to implement into that program. So, yes, it did exist before I got there. And yeah, I did tweak it a little bit as time went by.   01:16:44:22 - 01:17:08:11 Erin Croyle When we think about parents that are just getting a diagnosis, whether it be Down's syndrome or cerebral palsy or any of the other things that go on, you know, the rare diagnoses too, as some of my friends have told me, we don't have a club. Right. What I do love is that we help anyone who needs help because so many of our experiences are similar.   01:17:08:13 - 01:17:20:05 Erin Croyle You're able to reach so many parents at such a vulnerable time. Can you talk about some of the different reactions you've seen throughout the years?   01:17:20:07 - 01:17:46:23 Heather Trammell I think it's a good idea to remember that you never stand in the same river twice. So even though I can sit here and tell you that some of the stories I've heard are are very common or even repetitious, I mean, some things are just so common. I could almost write other people's birth story, but I never stand in the same river twice.   01:17:46:24 - 01:18:14:23 Heather Trammell I'm not the same person now as I was 20 years ago. Being the brand new parent support director and the parents that I meet now are certainly not the same people that they were then. First of all, the child rearing years of the people I meet now, I mean, these people grew up on the Internet. They grew up with cell phones and social media accounts.   01:18:15:00 - 01:18:39:14 Heather Trammell They are very, very well connected. So a lot of times when I meet a new or expectant parent for the first time, they have already done quite a bit of Internet reading. They have maybe gotten in touch with some other parents via social media. I'm just another step on the train. So a little bit of a difference now from back then.   01:18:39:15 - 01:19:06:00 Heather Trammell So 20 years ago, maybe there wasn't really anything for them to go look at, really. And it certainly wasn't very cheerful. I think in the twins or anything before the twins, you could find some websites about Down's syndrome and you're sorry you looked it, which is really not very cheerful. They were very medical based, not telling you anything about what life was like with Down's syndrome.   01:19:06:04 - 01:19:45:08 Heather Trammell And if they did, it was gloom and doom. Nobody wanted to hear that. So some of the parents I've met now have definitely got a lot more homework before they get to me. And if they have a prenatal diagnosis, they're going to have that information through noninvasive prenatal testing. So much more now than ever before. So back in 2000, the noninvasive testing you could get was an AFP test, which was accuracy was always never very good.   01:19:45:10 - 01:20:07:16 Heather Trammell So you actually really hardly could take that seriously. Back then, the noninvasive prenatal testing is now is quite accurate. So we just take it as, yeah, you're having a baby with Down's syndrome even though you didn't have a normal or serious test. So people know a lot beforehand. Sometimes I used to still go talk to parents who are surprised at birth.   01:20:07:17 - 01:20:35:12 Heather Trammell Some parents just refuse prenatal testing on moral grounds. They are not interested in getting that information. They are scared of any risk to their child's health at all. They just want to have a happy pregnancy. She or they are just convinced that there's just no way in the world they could ever have a baby with Down's syndrome because A, B, C, D, you know, go on with whatever reason they thought.   01:20:35:14 - 01:21:05:24 Heather Trammell So I do find parents to be a little bit more prepared by the time they talk to me. They have tested the waters in social media about who there are. People are, so to speak. So back in 2000, you could call Heather Trimble and you were. You just really hoped that she was a really nice person and that she was going to answer your call because you really have any idea what kind of moron I was?   01:21:06:00 - 01:21:25:02 Heather Trammell I mean, you had really good. No. But now they have all already been a part of social media circles and they have already met people virtually. And they kind of know, well, I like these kind of people. Are my people. These kind of people are my people. And then by the time they get to me, I guess it matter like whether I'm a jerk or not.   01:21:25:02 - 01:21:48:21 Heather Trammell I mean, they're just like, well, let's just get the local people on board. I am as much of a social media freak as anybody you will ever meet. I can spend hours on Facebook just whiling the afternoon away. I'd learn good luck. I've met people. I have become a better parent, a better person. I learned so much through social media.   01:21:49:02 - 01:22:20:10 Heather Trammell There's still something lost by not having in real life people to talk to. Even during FaceTime or Zoom. When we say it out loud. She's somebody else. My child has a disability. I think that helps us move down the road in a way that social media doesn't have. Social media, we can be anybody we want to be. We can feel any way we want to feel.   01:22:20:10 - 01:22:37:23 Heather Trammell We can curate any way we want to. But when you're actually with somebody, you have to look them in the eye and tell them, My child has a disability. You say it out loud. I think that helps us move forward in our parenting a lot.   01:22:38:00 - 01:22:57:03 Erin Croyle I love that you said that. I think about social media sometimes in the work that I do with my colleagues. You know, we make sure that we're meeting people on social media. I find myself having a difficult time wanting to interact with someone in real time because we do it so much less now.   01:22:57:05 - 01:22:58:06 Heather Trammell No.   01:22:58:08 - 01:23:12:18 Erin Croyle But at the same time, I still remember at Down's Syndrome Association of Northern Virginia, DSM-V, I think it was a Christmas party or a spring party or whatever. I met my people.   01:23:12:23 - 01:23:13:23 Heather Trammell I met a whole.   01:23:13:23 - 01:23:35:00 Erin Croyle Group of people and all of our kids were babies and they just laid on the thing together and we became friends. And what was beautiful about that is that in social media you find your people and you find your bubble. But in this group of people, we had all these different ideas and opinions that we could share and they weren't bubbled, right?   01:23:35:01 - 01:23:42:08 Erin Croyle We knew we could we could share different opinions. And when you meet someone in person, like you're saying, it is a different dynamic because.   01:23:42:10 - 01:24:06:17 Heather Trammell You know, am I saying it's better or worse? I just think it's a it's a nuance we really miss if we don't get together in real life. Now, that being said, thank God for social media because there are people who live way out in the very far western part of Virginia. I don't even know what road they go to to get to the store because they are just so far out there and they're not going to be.   01:24:06:18 - 01:24:32:02 Heather Trammell There's not like the monstrous Girls and Girl Association of Northern Virginia or the gown, you know, Virginia Gown Singer Association, which is really big, too. If you live within two miles of the Virginia border out west, there's not a lot of girls and girl existence out there. So thank God that there is social media connections for people who aren't able to be a part of anything in real life.   01:24:32:04 - 01:24:55:19 Heather Trammell And there are I mean, certainly there are some parents who are immigrants, recent immigrants in the United States. They're not very confident about their English. They spending the entire afternoon with people speaking English without them is going to be very, very difficult. And they are able to Google translate things that they're on the Internet, so they feel a little bit more comfortable.   01:24:55:21 - 01:25:06:02 Erin Croyle I think the beauty of that, too, is because we have really strong organizations across Virginia. For instance, you could send someone to the Center for Family Involvement. We have a.   01:25:06:02 - 01:25:07:03 Heather Trammell Rural.   01:25:07:05 - 01:25:37:04 Erin Croyle Right. We have a rural specialist who lives in southern Virginia who can speak to those issues we have. One of my colleagues is specializes in refugee support and she has multilingual staff members. We really make an effort between all of the organizations across Virginia to really support any family that comes our way. I think military families, really it's a hard time for them because they have to learn systems in whatever state they transfer into.   01:25:37:06 - 01:26:03:06 Heather Trammell Certainly. And and conversely, I have a hard time understanding their system, too. I think whenever I hear the word TRICARE, my eyes glaze over because I don't really understand that system very well. And I have no I've I've hardly moved ever in my entire life, but my military friends move all the time. So I do feel for them to every every demographic is going to have their challenges, I think.   01:26:03:06 - 01:26:11:19 Heather Trammell And we are definitely glad to I and we are glad I could definitely support anybody from anywhere. Yeah.   01:26:11:21 - 01:26:42:09 Erin Croyle Yeah, yeah. And I think the the beauty of the parent to parent support that a lot of groups like ours and yours offer is that we've been there that lived experience we understand the urgency we understand these feelings. I think it's very important that we have that support because I know that in the professional circles when you have to go to say, a community services board or even early intervention to some extent, you know, the people are wonderful, but they don't really understand what you're living.   01:26:42:11 - 01:27:06:20 Heather Trammell At all right. Right. You know, what's really funny is that sometimes, even to this day, and I'm not sure why it is, but sometimes I will talk to newer, expectant parents and they'll say, oh, well, do you have a child with Down's syndrome? And to me, in the one part of my brain, I'm thinking, Well, yes, of course I have a child with Down's syndrome.   01:27:06:20 - 01:27:26:21 Heather Trammell Why do you think I do this? You know, of course I have a child with Down's syndrome, but somehow, somehow they think I'm a social worker or something. I don't know if that's my lovely voice or they hadn't thought about it or I don't know. But I'm like, Yes, I, too have been on this path where you are.   01:27:26:22 - 01:27:51:23 Heather Trammell Now, one of the things that I, I try to remind myself not to say is I know how you feel now. I know how I felt when I was at your point, but I don't know how you feel because I don't know you and all the 30 some years that came before you found out your baby had Down syndrome, that informs how you feel at that moment.   01:27:51:23 - 01:28:15:22 Heather Trammell As I was saying with my own story, I know how you feel is totally not totally, but largely dependent on who you were before that moment. And I don't know that. So I want people to know that I have been in this spot before. That doesn't mean I know you, but I know I know how this spot looks because I've been there.   01:28:15:24 - 01:28:49:00 Erin Croyle And let's talk about that spot because I think that grief is something that probably most parents experience. And I know that a lot of us experience it through different parts of our life. But I think that the people you're seeing and the people that you're helping, the new parents, it's that grieving of the parenting experience you thought you were going to have and realizing the milestones that are going to look different than non-disabled siblings and cousins and friends.   01:28:49:02 - 01:29:16:16 Erin Croyle You know, one of the hardest things we have to face is that you could potentially outlive your child. There are these things I know in my own experience before my son, my first child, I didn't have to deal with the medical community. I didn't understand doctors, you know, doctors. I took them for their word. So it was this massive amount of grief compiled with this mass amount of information I had to take in.   01:29:16:18 - 01:29:20:19 Erin Croyle And so those first months.   01:29:20:21 - 01:29:21:10 Heather Trammell Yeah.   01:29:21:12 - 01:29:43:17 Erin Croyle When you were talking about like not wanting to talk to anybody, I remember telling people when my son was first diagnosed, he was diagnosed after birth and it was very confusing time. There was a test that came back and first he had it and then he didn't. And I don't I mean, that's a whole podcast in itself, but.   01:29:43:19 - 01:30:01:06 Erin Croyle Right. Yeah. I remember telling people, Please don't blow sunshine up my ass. Right. Like, just don't I know it's going to be okay one day. I get that. But right now I just need to feel what I'm feeling. And I remember. Right.   01:30:01:07 - 01:30:28:06 Heather Trammell And I know you could not be more right. I have heard it many, many times throughout my years in serving parents that they have had it with the unicorns and rainbows stories that they hear on the Internet and they're like, just give it to me straight already. Now, some people want unicorns and rainbows. I'm like, okay, that's fine.   01:30:28:08 - 01:31:02:00 Heather Trammell They don't want to hear about the medical concerns that they might have to deal with. They don't want to know how arduous special education is. They just want to have them enjoy their pregnancies, enjoy their new babies. They want to hear how life is beautiful and life is beautiful. Nothing. It's not. That's what they want to hear. But other parents feel like that is, as you so eloquently put it, blowing sunshine up my ass and they are like not having any of it.   01:31:02:02 - 01:31:08:21 Heather Trammell And they want to hear. They want to hear the whole story, not just one part of it. They want to hear the whole thing.   01:31:08:23 - 01:31:24:11 Erin Croyle So what would you say with 20 years, Heather? You mentioned before some of the commonalities and something you see a lot of the time or most of the time. But can you run through sort of the gamut of different reactions when you welcome new parents?   01:31:24:13 - 01:31:52:00 Heather Trammell Sure. I mean, when I whenever I pick up the phone or see a new email come by, I'm always a little I have a little bit of trepidation because I'm like, I don't know who's going to be on the other end. How are they doing? Fortunately, having grown up with a bipolar parent, I have become pretty good at reading between the lines with people when they tell me they're doing great.   01:31:52:02 - 01:32:19:02 Heather Trammell I'm like, okay, I'm accepting that at face value. I don't know that I necessarily believe it, but I don't believe it because of all the other things you said. But we'll just take it at face value. You think you're doing great. That's good. Some parents are doing just fine. They really do not have that excessive grief that can really happen with other parents.   01:32:19:04 - 01:32:44:15 Heather Trammell That is because I think in my experience, I've seen the parents who do not experience that kind of grief or loss. Feelings are parents who are just so excited to have a baby at all. Egal care whether their baby has Down syndrome or Up syndrome or Sideways Syndrome, they don't care. They're just so excited to be parents. They are great.   01:32:44:16 - 01:33:20:10 Heather Trammell They will just take any baby at all. Parents who adopt have already low times done their homework on Down's syndrome. Not always, but most all of them have. And they're prepared for the idea that their child has a disability. They've already got that. There are parents I have met who want all the information right now. They open the fire hydrant for them and they want everything they want to know about Medicaid and Social Security, and they want to know about early intervention, every single medical thing that happened.   01:33:20:10 - 01:33:48:01 Heather Trammell And they want to know right now, other parents do not want to know hardly. They don't want to talk about Down's syndrome at all. They may not believe the baby has Down's syndrome until the blood test comes back, which is they're like, they're not going to call me until the blood test comes back. Other parents call me from their hospital beds and they're not even out of the hospital yet because they want to get connected.   01:33:48:03 - 01:34:20:05 Heather Trammell Some parents want to hear stories. They want to know what life, daily life is with Down's syndrome. Others do not just want the facts, like the medical practical facts, like what tests we need to do. What tests do we need to do? Who I need to call. They really don't want to hear about other people's stories. So every parent is just really, really different.   01:34:20:07 - 01:34:39:08 Heather Trammell Some are, well, almost all not seriously. All of us are shocked, right? I mean, we're all surprised that we can actually sit out and plan to have a baby with Down's syndrome. Hey, honey, let's have sex. Can I maybe we'll have a baby with Down's syndrome if we get down our heads by the Atlantic Ocean at midnight, you know, kind of thing.   01:34:39:12 - 01:35:10:11 Heather Trammell Like they want to have a baby with Down's syndrome, and they're trying. So most of us are very surprised whether you get it prenatally or positively. Sometimes the the feelings are of surprise are very much the same between a prenatally diagnosed parent or a postnatal diagnosed parent. But with the slight nuance that the prenatal diagnosed parent hasn't met the baby yet, they can't see that they have my eyes and his nose.   01:35:10:15 - 01:35:36:01 Heather Trammell All they know is a diagnosis. That was all we knew when we were pregnant. She has diagnosis, but then she was born and we're like, Oh my goodness, you're just like him. She's got my hair. And she then looks she looks just like him. And everybody thinks they look just like him to this day. And and and we don't know what their personality is like.   01:35:36:03 - 01:36:13:23 Heather Trammell I think that's that's a little that colors that colors the surprise when it's prenatal versus postnatal. The challenging things about postnatal hours that you're getting all the information right when you are postpartum which is such an physically hard August. Physically, emotionally, mentally, every other way. Postpartum is hard for a woman and in general, and then you have all this information to absorb, whereas the prenatal prenatal diagnosed parents may have almost always got that information.   01:36:14:04 - 01:36:52:06 Heather Trammell They already know to ask the doctor about a heart defect. They already know what phone number to call for early intervention. They've they've got that. So that's a little bit of difference there. Most everybody is surprised. Not everybody is shocked and disappointed. How we feel about it would be some kind color by culture because some of my foreign born parents, their their home country culture affecting how they feel about their baby with Down's syndrome because this this this, their experience.   01:36:52:06 - 01:37:06:00 Heather Trammell And they knew about people with Down's syndrome in their home country, but they don't know what it's like here. So sometimes that will color their how their grief experience or their surprise at having a baby with Down's syndrome.   01:37:06:02 - 01:37:13:22 Erin Croyle How do you help families who are stuck in that grief cycle pull themselves out?   01:37:13:24 - 01:37:39:04 Heather Trammell I think parents for calling, as that is the first step of of moving forward in the universe is just picking up the phone. It weighs £9,000. So you should you should be congratulated for calling. You should be congratulated that you have a baby with Down's syndrome. So congratulations on your new baby. I've met very few parents in my life.   01:37:39:06 - 01:38:08:15 Heather Trammell 20 years of service. I can count on maybe one hand the number of parents I think have not ever moved forward in their life with Down's syndrome. I just believe in parents. I believe in parenting. I believe that parents will pull themselves together. I just have faith that way. Now, how I help them do that, I hope by listening to their stories.   01:38:08:17 - 01:38:30:13 Heather Trammell Tell me about your story. That's what made the difference for me. And I want to hold that space for them. Let them tell me about their story, how they're feeling, what they're thinking. They may or may not share all of what they're feeling or thinking because they are so disgusted with what they feel or think, or they think it's awful.   01:38:30:15 - 01:38:54:05 Heather Trammell Why would I say it out loud? I don't want Heather to think I'm a moron. Whatever. They don't want me to think badly of them because of what they may be thinking or feeling. The news is, though, that I have probably thought or felt it myself already, so it's not going to be a real shock to me. And in 20 years of service, I'm pretty unshakable, too.   01:38:54:05 - 01:39:19:08 Heather Trammell I've heard. I've heard it all. You can't mess me up, you know. So I hope that they will that when they share their stories, when they say it out loud that their child has a disability. I think that is a great first step. Just say it out loud. Other great steps are to and this will be increasing in bravery to meet other parents.   01:39:19:10 - 01:39:49:10 Heather Trammell So I will meet. I will have them join our email group. I'll suggest a Facebook page. I will invite them to new parent breakfast so that they can meet other parents. And I think that so so makes the journey better. You mentioned get yourself when you all you and all your baby, you got all your babies. They're all the quote at the picnic and you realize that you are not alone.   01:39:49:12 - 01:40:16:14 Heather Trammell You had you had similar experiences. And you can look at each other in the eye and you you just know you're going to be okay because you're not by yourself. And I think I think isolation would make parenting harder, I think not moving forward in this journey. Isolation would keep a parent from moving forward. So I want to invite a parent to get out of isolation, to poke their head up above the rabbit hole, so to speak.   01:40:16:16 - 01:40:50:17 Heather Trammell Now, I'm going to talk, right, because I'm the one who threatened my husband with certain death. If you told anybody that we had we're having a baby with Down's syndrome. So I recognized that that may take time. You know, it may not be the first indication I give you. It may not be the fifth invitation that I extend but eventually, when they when they do, I see so much positive forward motion in meeting other people online, if you must in real life would be great, too.   01:40:50:19 - 01:41:16:18 Heather Trammell So I think that really does help a lot. I think it helps parents move forward when they can see either through a blog or through what I share or through meeting other parents that they're so much joy to be had in raising our kids, too. Of course, there's difficult things. I am not going to gloss them over for a second, let me tell you.   01:41:16:18 - 01:41:40:12 Heather Trammell No, I'm not. But there's a lot of joy in raising our kids, too. We see their personalities develop. We see how what a positive impact they have on other people. We see us change to engaging. I am not the same person now as I was then. My husband would tell you that I am and I love him for saying this.   01:41:40:14 - 01:42:17:00 Heather Trammell He would say I am. How do you say you're the best version of you you've ever been? Hmm. Well, so I'm evolving. That's great. And so I love to see parents evolve. That's one of the most thrilling things about my work, is seeing parents go from A to B. I there is if I die, someone just put that on my tombstone somehow, You know, she was a sucker for a change of life, you know, And that's what that's what I love seeing is change life.   01:42:17:01 - 01:42:41:22 Heather Trammell Evil people who go from this is the worst thing that's ever happened to me. We will never smile again to. I love it here. Parenting is great. You know, I've seen that happen. I have met parents who, in the beginning were you couldn't get a positive word out of them. If you got any word out of them at all.   01:42:41:22 - 01:43:08:04 Heather Trammell Like they didn't come to Christmas party. Right. They they just didn't. And who gave them time? They eventually came to see the special things they loved about their child. They came to want to have other people see the special things that are true about their child. And they want to share it with the world. It's been fabulous seeing how that I have stories.   01:43:08:07 - 01:43:20:20 Heather Trammell Oh, my goodness, Erin, I have stories when I am very, very old and rocking in my rocking chair. I'll write down all the stories of all the parents I've loved over the years. It's going to be a great book.   01:43:20:22 - 01:43:26:05 Erin Croyle So tell me one of them. Tell me one of your.   01:43:26:07 - 01:43:56:00 Heather Trammell This lady, I knew she had a preschooler at home. She had a new baby with Down's and girl. And I invited her to a very small home gathering. We were going to just view this new video that it came out really small. There was going to be, you know, eight people there, tops. But she brought her family and the hostess of the event had a teenager with girls and girl.   01:43:56:02 - 01:44:17:07 Heather Trammell The teenager was just go. Just a really neat, interactive guy. Oh, he really wanted to meet you, you know, kind of thing. Just really a neat guy. His his speech articulation was very difficult to understand, though. I had to have his mom translate for me because I didn't know him, you know, So I couldn't understand what he was saying.   01:44:17:09 - 01:44:36:12 Heather Trammell We we went to go sit down to view the video and I walked around and this new family was there and I asked the hostess, I say, Wasn't Mary her family just here? I swear I just saw them 2 seconds ago. It's not a big house. She said, Well, I think it was just too much for them, huh?   01:44:36:14 - 01:44:57:19 Heather Trammell I thought to myself, What? Eight people was too much. Wow. Wow. Okay. All right. She's having a difficult time. That's like, all right. Well, over the next year, year and a half, her husband would come and bring the baby to events, but she never came. And I thought, Oh, let me show you, sir. Give my wife your best.   01:44:57:21 - 01:45:19:14 Heather Trammell You know, I just tell her, as it has about a year and a half later, she and I got together for coffee and Engie. She confirmed what was true for me and true for so many other parents. I Just need time to get my head around it. And she good. And not only is she get her head around it, but she held it up.   01:45:19:16 - 01:45:53:05 Heather Trammell A big photo shoot we were having for our association. She was the kingpin for this photo shoot. At the photo shoot, she was hugging all the babies, handshaking, all the parents smiles, just aglow all over because she just needed time to get her head around it. So I I'm always remembering that. True for me, true for so many other parents, whether it takes you 5 minutes, can get your head around it or a few years to get your head around it.   01:45:53:07 - 01:46:02:00 Heather Trammell If that time matters to you, then that time matters to you. And I want to hold that space for them. It helps.   01:46:02:02 - 01:46:41:09 Erin Croyle I'm glad that you said that because I think we're all so different and we all need time to figure it out on our own. I wonder when you were saying this, it made me think of myself and how I had kind of the reverse thing. And I still do in some ways where if I'm with friends or family who have non-disabled children, I remember specifically one time when my son was was young toddler preschool age and I had to leave this like moms night because people were complaining about you know, their kid and playing hockey or this or that.   01:46:41:09 - 01:47:15:16 Erin Croyle And it was just it just felt almost cruel to me because my experience was so vastly different. And so a lot of times I find myself gravitating to parents who have kids with disabilities because there's this unspoken understanding there where if my son does something strange or I have to leave suddenly or you know, all of the things that we have to endure, they just get it.   01:47:15:18 - 01:47:40:12 Heather Trammell Yeah. Again, people who get it really do make a difference. And that that lady I told you about that I met when I was pregnant. She had an illustration that I have kept in my heart all these years too. She said, You know, Heather, there are muggles and there are wizards in the land of disability. The Wizards are the people who get it.   01:47:40:14 - 01:48:08:07 Heather Trammell You know, we understand each other. We know there's platform nine in three quarters. We know how to get there. You know, we know each other. And then there are muggles. They don't get it. They just don't get it. Now there are kind hearted muggles and there are stupid muggles. There are kindhearted wizards and there are evil wizards. Believe me, there's plenty of people in the way of disability who I don't care to have storybooks with.   01:48:08:09 - 01:48:19:16 Heather Trammell They're just not my people. But there are muggles and there are wizards. Some people get it, some people don't. And there's a real camaraderie when we have people who get it. I totally agree.   01:48:19:18 - 01:48:49:03 Erin Croyle That is the most interesting analogy I've ever heard. And it just it also highlights the beauty of disability and the uniqueness and the way that it expands who you are as a person. You touched on this earlier, but I think a lot of us feel like if it weren't for my son, I don't think I would be as worldly and as tolerant and as patient as I am now.   01:48:49:03 - 01:48:57:21 Erin Croyle I just there are things that I get and there's an empathy that I have that I'm not sure would have existed or matured in me. Right.   01:48:58:00 - 01:49:16:09 Heather Trammell Our kids change us all the way. Well, parenting will change anybody. You know on any day of the week. But I think parenting changes us when disability is in the mix in a much different way. It's so much more of a primal way, I think.   01:49:16:11 - 01:49:34:21 Erin Croyle Yeah, and it informs the way. So I have two younger kids is, you know, and it informs the way we parent them. And I've put less emphasis on certain things that I realize now aren't important, but I'm not sure if I would have if it weren't for my oldest.   01:49:34:23 - 01:49:52:17 Heather Trammell My oldest held Down's syndrome, but my younger daughter is on the autism spectrum and understanding my older daughter's needs. And having rearranged my mind about, you know, developmental milestones.   01:49:52:19 - 01:49:53:14 Erin Croyle And.   01:49:53:16 - 01:50:22:04 Heather Trammell What what she should and shouldn't be doing it any age appropriate thing has helped me a lot. When my younger daughter was diagnosed on the autism spectrum because I was not did not experience that grief response with her that I did with her sister, because with her I was like, Well, okay, she has a disability is autism. I don't know much about autism, but I'm going to find out and I know exactly where to look.   01:50:22:10 - 01:50:50:05 Heather Trammell I know who you ask. And so I think in one way, parenting our younger daughter has been enhanced or helped because we're like, okay, so this is you. This is you where you're at right now. I am here too. I'm here for you to move you to whatever your next level is of understanding or development or whatever you need.   01:50:50:07 - 01:51:09:21 Heather Trammell Here I am. Whereas with, you know, when we first felt that our daughter had girls and girl and we were like, Well, there's absolutely nothing we can do about that kind of thing, we felt like the world had crashed and burned right there, but we didn't feel that way with our younger daughter. We were we were. What's the what's the word?   01:51:09:21 - 01:51:35:20 Heather Trammell I want to use? Curious, inquisitive. We were like, Well, so tell me, what can I do for you? You know? And I think that my world has come crashing down, but more like so this is interesting. So let's do this. Let's do this thing. So I think it was definitely different the second time around.   01:51:35:22 - 01:51:47:17 Erin Croyle Interesting. And this is I just have to ask out of my own journalistic curiosity, what differences do you see in the Down's syndrome community and the autism community as a parent?   01:51:47:19 - 01:52:23:13 Heather Trammell MM Different. Yeah. Well, I am one of those really weird autistic mom people who embraces neurodiversity like I'm going to wave my neuron diversity flag, you know, like somebody to have the puzzle pieces. But I like neurodiversity. I think I see one of the differences is the language we use people first language reflective, reflected we in the girls and girl community, but they use identity first language in the autism community.   01:52:23:18 - 01:52:43:20 Heather Trammell So I am more likely to you're more likely to hear me say in conversation, Yes, I have a daughter with Down's syndrome and I also have an autistic child as well. Well, I would never say I have a Down's syndrome child. Right. And I would not so I would not stand in my autism circles and say, oh, my child has autism.   01:52:43:20 - 01:53:20:07 Heather Trammell I would say she's autistic. I what I see, sadly sometimes even in both communities, but for different reasons, is when parents divide parents can really divide in both communities, and it just breaks my heart to see it every time Are in the autism community. There can be a very sharp divide between children, autistic children who need an incredible amount of support and those who don't need as much support, i.e., high functioning, low functioning.   01:53:20:09 - 01:53:44:22 Heather Trammell My gosh, we could go into this forever. But I see that divide a lot in the autism community and believing that autism can be cured by X, Y, and Z. I mean, this could really give my parents a lot how we treat what we do for autism, how we help people who are autistic in the gaps in your own community.   01:53:44:22 - 01:54:18:04 Heather Trammell I think we definitely can divide yet again on the high functioning, role functioning people. That can be really difficult. I think in the towns in your own community, we know it's genetic, we know it's a genetic condition. We already know this medical science has spoken. It is a genetic condition. There's no gray area about that. But then sometimes we'll divide again on educational choices.   01:54:18:06 - 01:54:46:00 Heather Trammell What disappoints me and hurts me so bad is to hear parents in either community beat each other up for their choices. Like if you went only X, Y, z, then your child would be doing better. You should ABC, you should do. You should do this, you should do that. You should do that because are not your child is not going as well.   01:54:46:02 - 01:55:17:17 Heather Trammell Because you're not you are not as good a parent. This is the unspoken kind of thing that happens in both communities. And I find it so disheartening and so disappointing. Inclusion, school inclusion choices, health care. Whether you use this therapy, that therapy, this supplement or that supplement, I just it just disappoints me so much to hear parents beat each other up about that and divide about that crushing, absolutely crushing.   01:55:17:19 - 01:55:43:01 Erin Croyle Well, Heather, you just provided the perfect tease for our part to pull. That's what we're going to talk in the next episode. Yeah, because I can't wait to talk about that. Yeah, I have one more question. I think just one more related to kind of the parenting thing and I am curious about how extended family and close friends affect your work.   01:55:43:01 - 01:56:01:18 Erin Croyle What you see, because I know that in my own circles it can range from like supportive family who understands and makes an effort and then others that try to understand but really don't. And then you have, you know, family and friends who think that they get it, but they don't. And they talk to your kid as if they're a child.   01:56:01:18 - 01:56:24:18 Erin Croyle And it's like, oh, yeah, of course you have people who are downright offensive and might use the R word or might say something terrible and then get mad when you call them out. Right. So, you know, do you deal with those dynamics and, you know, how do you how do you help families navigate that? Like, really difficult sort of.   01:56:24:20 - 01:57:01:07 Heather Trammell Yeah. Yeah. I think in Down's Syndrome circles, I am not called upon to assist with new parents having problems with their new the new grandparents. Like their parents, sometimes they will have difficulty, like the grandparents will not believe the diagnosis. They just don't have Down syndrome. They all look like they have Down's syndrome. Therefore they don't have Down syndrome or grandparents.   01:57:01:09 - 01:57:25:18 Heather Trammell Well, again, we're talking about a different generation. I mean, my parents in their eighties did not see adults with Down's syndrome walking around because they didn't have that life expectancy then. But now I'm going to go visit my dad next week in his eighties. And if he doesn't know it already, my daughter will outlive me. Well, what's that going to be about?   01:57:25:18 - 01:57:52:00 Heather Trammell That never happened in this day and age. So sometimes grandparents perceptions can be very colored that way. And then other grandparents, like my own parents, they're like Johnny on the spot. You tell us what we need to know, what we need to think when we need to show up, and we are all about it. You just tell us, you know, I'll tell you a story that really, really mattered a lot to me when I was new parent.   01:57:52:00 - 01:58:12:16 Heather Trammell My daughter with Down's syndrome was in neonatal intensive care for about a month, and they gave us, of course, no indication of exactly when she was going to go home. You know, we'll see that kind of thing. So my dad and his fiancee wanted to come out and visit us. And I said, Well, Dad, I don't know if the baby's going to be out of the hospital by then.   01:58:12:18 - 01:58:31:23 Heather Trammell And your fiancee is not family yet. So I don't know if she's going to be actually allowed to come into the nick. You. I didn't even know her then. I didn't even know, like, if I wanted her to meet the baby. He said, well, we're just going to come anyway, okay? And I'm like, okay, your wife come on out, you know?   01:58:31:23 - 01:58:56:23 Heather Trammell So they got a hotel room and they met us at the hospital one day. And my that his fiancee, now my mother said, Hey, why don't Scott and I go get a coffee in the cafeteria? You take your girl upstairs to go visit the baby. Great. You know, So I went upstairs and they're all a flutter upstairs. So, Heather, today's the day you're ready.   01:58:56:23 - 01:59:19:23 Heather Trammell And I'm like, Ready for what they said to be going all day. And I'm like, No, seriously, it's going home. I didn't even have the car seat, you know, kind of thing. So we went back downstairs. We said, Hey, guess what is going home? Gay? Surprise, surprise. My now stepmother, then father's fiancee, said, Wow, that's so exciting. That's great.   01:59:19:23 - 01:59:41:22 Heather Trammell Hey, here's what your dad and I can do. You can. I can go back to the hotel you guys give all situated and squared away here at the hospital. Go home, chill out, get some rest. Call us when you want to come over. Will bring dinner. I was like, Awesome. That's great. So I, I, we got all situated, got back home.   01:59:41:22 - 02:00:03:19 Heather Trammell It all went exactly that way. Later on, I thought to myself, you know, if it had been my dad's second wife who had already who had passed away by this time, but if my dad's second wife had been a part of this scenario, it would not have gone down like that. She would have badgered the McHugh staff to come inside to the McHugh.   02:00:03:21 - 02:00:32:18 Heather Trammell She would have hovered over us on way out the McHugh because there's just no way we could have done this by ourselves because we weren't capable. She didn't see us as adults. We couldn't possibly handle this without her expertise, you know, And she would have probably just barged ragged right there at home. And I thought to myself, you know, this is absolutely I couldn't give I couldn't have planned this better myself.   02:00:32:20 - 02:01:04:09 Heather Trammell I love this way, Dad, Marry her now. You know, she's great today, but I always remember that about her, that she gave us space and she believed that we had it in us to be the perfect parents for the job. And if I ever hear difficult stories from new parents about their parents, about their the new grandparents, it's usually the kind of story that starts with they don't think we can do it.   02:01:04:11 - 02:01:27:14 Heather Trammell They don't think we have it in us. They've seen us screw up this, that and the other thing, and they're sure we can't handle this. So I find that very disappointing. That doesn't happen very often. I'm glad to say that there are grandparents out there, like my parents who are all over it. They are glad to read and understand whatever you tell them to read and understand.   02:01:27:16 - 02:02:03:15 Heather Trammell They are all they're loving on the new baby and loving on their adult children. And they are absolutely awesome. I think in autism parent circles I hear much more challenging situations with extended family, brothers and sisters who won't let their children around because because yours is just too wild or, you know, whatever too much grandparents who are most certain this child doesn't have autism at all.   02:02:03:19 - 02:02:34:23 Heather Trammell They just need a good spanking. You don't disappoint them enough. They can't possibly be autistic friends. Some friends have stepped up beautifully. And yet I do hear heartbreaking stories about other friends who are so they're so afraid of saying the wrong thing that they say nothing. And then they go years of saying nothing, and then the relationship moves on, which is very, very sad.   02:02:35:00 - 02:02:39:16 Heather Trammell Those are some of the things that I've heard. Difficult.   02:02:39:18 - 02:02:40:12 Erin Croyle Yeah.   02:02:40:14 - 02:03:15:06 Heather Trammell Not always. Some families are fabulous. You know, they all come to Buddy, walk with their team t shirts on and everything, and they've got it. They've got it in the bag. But then others not so much difficult generations can be make that difficult culture can make that difficult. Lack of understanding about the disability can make that difficult. I know some of my foreign born parents have not told their parents back in their home country that their child has Down syndrome because then their parents back in their home country would worry about them a lot.   02:03:15:08 - 02:03:25:17 Heather Trammell They wouldn't get it. They wouldn't understand it all. Yeah, that would be very difficult. Has that been your experience of of your colleagues?   02:03:25:20 - 02:03:53:09 Erin Croyle I mean, it's similar. Yeah, there's very different. I mean, it just runs all over and yeah, the cultural differences are significant where, I mean, you know, my son was born in Malaysia and when he was born and we saw doctors there like, well, no one here. If someone has a disability here, you don't see them, right? They just they're just kind of kept in their homes and I don't know about you, but after my son was born, I hadn't.   02:03:53:11 - 02:04:06:00 Erin Croyle My son was the first person I met with Down syndrome. And so after he was born, then I saw every thing and I started noticing where people are at all.   02:04:06:00 - 02:04:06:13 Heather Trammell Right.   02:04:06:15 - 02:04:22:00 Erin Croyle Right. And well, and then the whole. But you're part of the club thing, like, it gets really embarrassing when my it's really embarrassing when my son isn't with me because I'll see like a parent with somebody or an adult and I'll just want to who has Down syndrome and I just want to go up and talk to them.   02:04:22:02 - 02:04:41:07 Heather Trammell Right? Right. Yeah, I know, I know. Yeah, yeah. If you had your son with you, you have more of an end to have that conversation. I remember being in a cardiologist office with my younger daughter one day. Now my younger daughter is autistic, but you know, that doesn't have a look about it. So we were just there waiting for our appointment.   02:04:41:09 - 02:05:02:21 Heather Trammell And there was a young mom there with her little boy who had a genetic condition, some kind of genetic condition. She was entertaining her little boy with toys and engaging him. And they were very cute together. And I was just sitting there with my daughter. You know, I was reading a magazine. She was reading a book. We were waiting for our appointment.   02:05:02:23 - 02:05:23:08 Heather Trammell And I'm willing to, like, get the t shirt or the mug that said, I get it right. You know, I don't don't sit here and think I'm the person that doesn't get it just because this one looks typical. You know, I'm one of you. Me? See, I got the t shirt, you know, I just wanted to, like, pop out there.   02:05:23:10 - 02:05:44:20 Heather Trammell But I also realized that, you know, not everybody funny enough, not everybody wants to meet me. You were right. You know, sometimes people are just going to the grocery store. Sometimes they're just playing with their kids. Sometimes they are just pumping gas. Just leave me alone. But they really don't want to talk about this one.   02:05:44:22 - 02:05:54:16 Erin Croyle I know. I think I talked about this with somebody else. I just wish there was like a sign or something. We could give each other a support. Those moments because I know, right. Some sort of.   02:05:54:18 - 02:05:56:01 Heather Trammell You know, signal.   02:05:56:03 - 02:06:10:17 Erin Croyle Because I've had a moment where I've been in a store with my son and I've gotten the worst looks. Yeah. And I don't really want to talk to anybody with that about that. But I would love a comforting something from someone who gets it.   02:06:10:19 - 02:06:42:21 Heather Trammell Yeah. That there could be the like, look of disdain or disgust, that kind of thing. Or that could be the pity book. I feel so sorry for you. Look. Or or a to that would be the. Oh, isn't she sweet? Look kind of thing. I'm like, Well, yes, I will tell you, she is actually very sweet, but she's also 21 and you can say hi.   02:06:42:23 - 02:06:58:00 Heather Trammell She may say hi back. She may not, you know, I mean, she she's not just a cute stuffed animal, you know? I mean, she's not just a cute little thing. She's a person, right? Like a real person. And so those can be very difficult times. I agree. Yeah.   02:06:58:02 - 02:07:04:03 Erin Croyle And I sometimes wonder, I don't know about you and this is really bleak, so I'm going to ask a happy question after this.   02:07:04:05 - 02:07:05:10 Heather Trammell Okay.   02:07:05:12 - 02:07:31:14 Erin Croyle People make choices when they find out their child has a disability and it's prenatal and that's their choice. I wonder, though, how they feel when they see our kids. I wonder how I would feel had I made that choice and I wonder sometimes if if there's an inquisitive look or a long stare, What what's beyond that? It must be really painful or strange just to have that happen.   02:07:31:20 - 02:08:04:10 Heather Trammell When the world be a better place. If we were more curious about things than we were actually just mental about them. Or we have an eye, we have a fixed idea about them. So I can see if I'm hopping through the grocery store with my daughter and I get what appears to be the look of, Oh, well, you poor girl, you know, kind of thing or whatever, whatever kind of look I might get.   02:08:04:12 - 02:08:47:19 Heather Trammell That's not positive. On the one hand, I be very disgruntled about that. Look, I say, stop staring at me, jerk. You know, or I could be curious. Mm hmm. I wonder why they feel that way. Like you. I'm curious to know if sometimes if I am in situations that if maybe the person passing by knew somebody with Down's syndrome once, maybe prenatally, I wonder, you know, so that kind of of curiosity might make the world a better place if we ask ourselves questions rather than have fixed ideas.   02:08:47:21 - 02:08:52:03 Heather Trammell Yeah, absolutely. Yeah.   02:08:52:05 - 02:08:59:02 Erin Croyle I want to know what the most rewarding part of your job is. Supporting families.   02:08:59:04 - 02:09:31:11 Heather Trammell Oh, heavens, that would be difficult to say. I think I had mentioned it earlier. I think the most rewarding part of what I do is seeing families move from point A to point B, a changed life. I'm just all over that. Like the plague. I've met many new and expectant parents who were just devastated by hearing that their child had Down's syndrome.   02:09:31:13 - 02:09:55:06 Heather Trammell And yet three, even 3 minutes to three weeks after their child's born, they're practically going into the room At New Parent Breakfast. I could cut the plates and they could keep the, you know, keep the lights on in the room by themselves because they're just so happy to welcome their new baby and see that their their new baby is just like them.   02:09:55:08 - 02:10:24:24 Heather Trammell He's got his nose, her eyes. It's very much a part of their their families, not some three alien. It's just their little girl or their little boy. I love seeing that change. I love seeing light bulbs go on for my foreign born parents. When they realized that not only can their child go to school, their child must go to school, they they're required to go to school.   02:10:25:03 - 02:10:52:18 Heather Trammell There's a law that protects them as they go to school or provide for them, or at least as good as that law can provide for them, and that a nice revelatory information for them. I knew a lady once from a foreign country or home in her country questioning medical, especially if you're a woman, is unheard of. It's just unheard of.   02:10:52:20 - 02:11:15:16 Heather Trammell She called me, concerned that she could not get a genetics appointment for her child for several months. It takes forever to get into the genetics department anywhere at any hospital, and I wasn't surprised that they told her that they didn't have an opening until, what, was it, six months later or something like that. And I said, Well, that's not very surprising.   02:11:15:18 - 02:11:38:22 Heather Trammell I have an idea for you, though. Take whatever appointment they give you, even if it's eight months from now, then in three weeks call them back. Say Hi, I'm Mrs. ABC. I have my son has an appointment in August. I'm wondering if there have been any cancellations or any openings since then? No. Oh, okay. Thank you very much.   02:11:38:22 - 02:11:57:16 Heather Trammell And then you call three weeks later and then call three weeks like, Well, she took my advice and she actually got the baby in just genetics, like within a couple of months. It was great. She called back and I said, Oh, hi, this is ABC, how are you? Nice to talk to you again. Hey, how is your son doing?   02:11:57:18 - 02:12:19:15 Heather Trammell Well, I just called to tell you that my son got his genetics appointment like his for next month. I think that's wonderful. Congratulations. That's great. Yay! Do you have any other questions? I can help with you. She said. Oh, no, I just wanted to say thank. Think. I just wanted to say thank you for for your advice. And I'm like, Oh, that's so nice.   02:12:19:21 - 02:12:37:00 Heather Trammell Not everybody says thank you, you know, or at least that goes out of their way to say thank you that nicely. So I love seeing a changed life. There's one you're going to know me for a long time, Erin. When I make sure this is on my tombstone. She was a sucker for a change of life.   02:12:37:02 - 02:12:40:06 Erin Croyle I love that you put sucker in there.   02:12:40:08 - 02:12:41:00 Heather Trammell I want to make.   02:12:41:00 - 02:12:43:01 Erin Croyle Sure I'll talk to your husband and make sure that.   02:12:43:01 - 02:12:47:19 Heather Trammell You make sure. Okay? Make sure I'm counting on you.   02:12:47:21 - 02:13:10:07 Erin Croyle Oh, my gosh. And I just want to add to when we're talking about the joyfulness and new parents that that I didn't my son was my first child. I didn't realize this, but babies with Down syndrome because of the low muscle tone, when you hold them, they just melt into you, just screaming because you know, non disabled baby.   02:13:10:07 - 02:13:13:19 Erin Croyle You know that rigid ness of the way arms. It's not the same.   02:13:13:22 - 02:13:25:16 Heather Trammell Yeah. Yep, yep, yep. Same. Same. No, my daughter was folding to me like a little ball. It was absolutely adorable. Is great. Yeah. She still can fold into a little ball, believe me.   02:13:25:18 - 02:13:30:02 Erin Croyle Yeah. Yeah. Oh, well, I want to thank you. This has been.   02:13:30:02 - 02:13:41:01 Heather Trammell Wonderful this year. Great talking to you about anything, Erin. Wonderful. Thank you for having me.   02:13:41:03 - 02:14:03:07 Erin Croyle And thank you listeners for joining us. The second part of my interview with Heather Trammell will be out before the end of the year. She and I will be talking more about how toxic the high functioning, low functioning mindset can be. I'll have a podcast out soon about how difficult it can be for people with disabilities to find meaningful employment.   02:14:03:09 - 02:14:16:13 Erin Croyle In the meantime, please rate review and share this podcast and tell me what topics you want to know more about. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.    

The back to school grind is tough for everyone, but it's over in a flash and parents get a breather during school hours. Except when they don't.  The parents and caregivers of students with disabilities live in back to school mode all year long. It's almost like Santa preparing for Christmas. The first day of school is the main event, but elves are busy all year long. Come to think of it, Santa might have it easier.  This episode is here to make things easier for families. The Center for Family Involvement's Blind and Vision Impaired Specialist Dawn Pfeifer-Snow supports countless people with questions about school. She's also a mother with lived experience navigating school.  Meg Druga taught in an inclusive preschool classroom for 11 years. She is an Early Child Coordinator with the Training and Technical Assistance Center (TTAC) at James Madison University. She's also a Determinator with I'm Determined. To learn more about that program and its origins, check out our episode, "Why We Need More than Inclusion."  Between the host and guests, there are tips, insights, and validations that everyone can use, from the Pre-K set all the way to high school and beyond.   Take a listen and please, share your experiences with us!   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.      TRANSCRIPT   01:00:07:17 - 01:00:32:11 Speaker 1 Welcome to The Odyssey. Parenting Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I've been on this less traveled road since 2010, when my first child was born with Down's Syndrome. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:32:13 - 01:00:58:09 Speaker 1 This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we don't shy away from the tough stuff either. Among the hardest of the hard for many families is school. The back to school vibe is completely different when students have ideas and five offers. I see this with my own three children.   01:00:58:11 - 01:01:19:15 Speaker 1 For my younger nondisabled kiddos, it's a breeze. We just get the stuff they need from their school supply list. Let them know their teacher and room number and poof, off they go. For my oldest, who's now a teenager. The fall back to school prep starts in January. His monthly IEP meetings shift their focus to the next academic year.   01:01:19:17 - 01:01:40:19 Speaker 1 School supply shopping consists of my staring at a long list, wondering what he'll actually need and use in the weeks and days leading up to the first day. I'm in touch with his school team so we can make the transition as seamless as possible. He needs help getting to all the new classrooms, not just on the first day, but until he gets the new routine down.   01:01:40:21 - 01:02:03:04 Speaker 1 And it doesn't stop after the first day. There is constant communication as my son and his new team figure each other out. And of course, in middle school and high school, these transitions come each quarter with new classes and teachers. Unfortunately, the challenges I face with my son are just a drop in the bucket compared to what many caregivers juggle during the school year.   01:02:03:06 - 01:02:27:08 Speaker 1 That's why I've asked Dawn Pfiefer-Snow and Meg Druga to join me today. Dawn is the Center for Family Involvement, Blind and Vision Impaired Specialist and the Family Engagement specialist with the Virginia Deaf-Blind Project. She's supported countless families with back to school questions and other issues. She's also a mother with lived experience, navigating schools and so much more.   01:02:27:10 - 01:02:53:06 Speaker 1 Meg taught in an inclusive preschool classroom for 11 years. She's now an early childhood coordinator with TTAC the Training and Technical Assistance Center at James Madison University. She's also a determined eater with I'm determined. And if you want to know more about that program and its origins, check out our episode Why We Need More than Inclusion. Now, both of you, you're here.   01:02:53:07 - 01:03:08:05 Speaker 1 I'm so excited. I think this is a very important conversation for parents and caregivers to hear because it is such a tough time. I would love to hear from you both to just give a little context of who you are and why they should listen to you. Meg, can we start with you?   01:03:08:07 - 01:03:37:09 Speaker 2 Sure. Thank you, Erin, for having me today. I am very excited to be here, as Erin mentioned. My name's Meg Druga. I'm an early childhood coordinator at the Training and Technical Assistance Center. I've been in my role for almost three years. I'm getting ready to come in to my three year anniversary. Prior to that, I was an inclusive preschool teacher in the school division in which we had 100% inclusion in our preschool program.   01:03:37:11 - 01:04:07:17 Speaker 2 I am duly endorsed in early childhood and early childhood special education, and I came into my career a little late. I actually started down this path in my path. I was going to school in agriculture and applied economics about halfway through my college experience. I realized that's not what I wanted to do. So I literally came back home, showed up on my parents doorstep, and started trying to figure out what I wanted to do with life.   01:04:07:17 - 01:04:33:03 Speaker 2 And through that journey, I happened to bump into an amazing early childhood special education teacher who told me that she needed a new educator in her classroom and so brought me into it. And after the first day of school and her newly inclusive preschool classroom, because it was a new program that Virginia was running, I fell in love and decided that that's what I wanted to do.   01:04:33:04 - 01:05:03:07 Speaker 2 So for three years, I worked as a peer educator and went back to finish my degree in early childhood special education. So I fell in love with early childhood special education and realized that that's where I want to be. I'm also a mom of a very spunky eight year old, and people often hear me talk about Lizzie. We live in a beautiful rural community with my husband and our dog, Bo.   01:05:03:09 - 01:05:25:13 Speaker 1 I love it, Meg, and I love a good origin story because, Dawn, I don't know about you, but I was a journalist before this and I didn't know much about disability or any of it. And then I have my son and that's why I'm here. I'm always curious when someone's not really affected by disability, what brings them into the field, what brings them into the profession, whether it be special education or policy?   01:05:25:15 - 01:05:35:23 Speaker 1 So hearing that and hearing that you fell in love in a classroom, just kind of it makes my heart sing because those are the people who we want teaching our kids anyway, don't we?   01:05:36:00 - 01:05:52:23 Speaker 2 Yeah. Yeah, it was I always say it was a life changing moment for me. That class I still carry with me and they have graduated now. But in my mind they're still these three four year olds that forever shaped my career path in my life. And I'm always very grateful.   01:05:53:00 - 01:05:55:13 Speaker 1 Dawn, can you tell us a little more about yourself?   01:05:55:19 - 01:06:18:12 Speaker 3 Yeah. Like you, Erin, I love to hear the why and the how of people getting into, you know, the disability world, for lack of a better, better word, much like you, because I've heard you share your story as well. Erin, I had really never been around anyone with disabilities before. I remember one young man in high school, and that's it, right until I had my daughter.   01:06:18:17 - 01:06:38:13 Speaker 3 And that's really when people ask me, you know, what do I do? That's usually my first thing. I'm a mom first, right? I'm a mom. And then I also provide support to families who are have loved ones who are blind, visually impaired or deaf blind. But yeah, my daughter brought me into this work and, you know, I'm forever grateful She likewise changed my life for the better.   01:06:38:15 - 01:07:06:07 Speaker 3 So, yeah, So I'm a mom first. I always identify as having three children with visual impairments. So my oldest biological daughter is 21, freshman in college. She's blind. She's identifies on the autism spectrum, has hydrocephalus and a seizure disorder. My youngest biological child is getting ready to go off to her freshman year of college, and she is blind in one eye and also has ADHD.   01:07:06:12 - 01:07:32:01 Speaker 3 Totally different eye conditions. And then I was blessed to have a bonus daughter stepdaughter, I call her bonus daughter, who is forever 18 and seven, and she had a genetic degenerative neurological condition that caused her to lose her vision first. And then it affected all of her other abilities over time. But when she was young, she had already lost all of her vision, which also led me to my wonderful husband.   01:07:32:03 - 01:08:11:04 Speaker 3 So I've been doing this work now for probably 19, 20 years, is when I first started really reaching out and trying to connect with families and found myself providing support to other families because I was doing was attending and taking so many trainings and workshops to educate myself and as I was establishing a network of support for myself, I was very quickly finding that even parents of older children had not taken a lot of these trainings and had not were not aware of their rights, were not aware of all the various options that they had.   01:08:11:06 - 01:08:28:24 Speaker 3 And so I found myself naturally helping other parents really early on. So I would say 19, 20 years of doing this work informally and going on 12 years with the Partnership for People with Disabilities, doing this work in a more formal way of helping families navigate the services and systems.   01:08:29:01 - 01:08:52:16 Speaker 1 Yeah, it's interesting. So many people I meet like you and I don, I think we know how hard it's been for ourselves and we just want to make that easier for others and just so we can enjoy our kids. And I think that's why I really wanted to do this special. You know, I think so many people equate back to school for parents, especially mothers, frankly, is like, oh, your kids are back in school.   01:08:52:16 - 01:09:10:24 Speaker 1 You can take a break and take a load off. But when you have a kid with a disability, it's a whole couple notches up. And so I really would like to start with what do you recommend to ease that transition back into school? Dawn, I want to start with you because you have older children, but also you've been through the whole spectrum of it.   01:09:11:01 - 01:09:13:06 Speaker 1 So what what tips do you have there?   01:09:13:08 - 01:09:42:09 Speaker 3 So easing back into school, if I was to look at it from just the summertime and preparing for that first day of school, my answer is going to look very different versus preparing for that upcoming year, because I start that in the winter of the previous year. But looking at it from the perspective of from the summertime, what we have always done and what I found was very helpful was, you know, orienting to the space.   01:09:42:09 - 01:10:13:09 Speaker 3 Now, granted, I'm thinking of this from the perspective of having a blind child, but really, I think that applies to all, all children, you know, having a chance to go in, not necessarily on back to school night because that's busy is crazy and you have very limited time. But, you know, carving out that time when the school is more empty, quiet, just the teachers are in there working on their classrooms and having a chance to orient to where your classes are going to be, even in elementary school, if that's just one class, it might be a different class.   01:10:13:14 - 01:10:32:05 Speaker 3 And another thing that was always very helpful was arranging a team meeting with all of the teachers that were going to be involved for the year. That way you gave everybody an opportunity to meet each other, talk about supports that might be needed, help my child feel comfortable and ask questions that needed to be asked.   01:10:32:07 - 01:10:56:10 Speaker 1 I completely agree. For context, my son is going to be 13 and going into seventh grade. And yeah, those team meetings. Not only do I ask for one ahead of school, but in my son's IEP. I have so many meetings per year and I typically try to frontload those meetings because that transition time is difficult. So like maybe two meetings in the first month and another meeting in October.   01:10:56:10 - 01:11:22:13 Speaker 1 And just because any kid transitioning is difficult, you add a disability into the mix and those transitions are so much harder. You add intellectual disability into the mix and just finding a classroom can be hard. And so I totally agree. If you can work with that school team in a range of time to get your child in before the chaos, is there, it is so useful.   01:11:22:15 - 01:11:42:23 Speaker 1 Another thing I've tried to do too, sometimes that first day is so busy. The overwhelm component is there either request that he comes before the crowd or after the crowd. And with middle school, because you have this 20 minute window before school starts, they allow me to go ahead and take him to his homeroom so he can like avoid that chaos and yelling.   01:11:42:23 - 01:12:16:15 Speaker 1 I mean, middle school is loud and chaotic. And then one other thing before I go to IMAG, something that I've always done, I do sort of a resume for my son. So his team, since he has limited expressive language, I want his team to be able to know who he is. So certain things that might set him off, certain things that might help him if he's having a tough time, you know, his favorite songs that can help in transitions, helping him get water, reminders for the bathroom, who his siblings are, because the teachers, if they don't know you, they're not going to know who your child relates to.   01:12:16:15 - 01:12:38:08 Speaker 1 And if he's not able to say it, our children can miss out on a lot of those first day conversations. If the team isn't aware of the bigger picture of who this child is. So I think especially if your child has communication difficulties, really helping to prevent any sort of missed items so they can be involved is really important.   01:12:38:10 - 01:12:40:03 Speaker 1 Meg, how about you?   01:12:40:05 - 01:13:04:15 Speaker 2 I feel like everything that both of you guys were saying, I'm just nodding in agreement. First of all, my perspective is a little different because I have preschoolers. And so I recognized that parents, whether your student had a disability or not, because we were an inclusive classroom for many parents, they were handing their child off to me for the first time of handing them over to somebody else.   01:13:04:17 - 01:13:36:21 Speaker 2 And that's scary in general when you have a student with a disability. I think that that anxiety that the parents feel and that it's just it's so it's ten times more and so we worked really hard on setting to bring down that anxiety a little bit. I always open my classroom before the school year. I think it's important to request that they come in and see the classroom, see the space, get acclimated to the space.   01:13:37:01 - 01:14:00:21 Speaker 2 For example, I had a student one year who had various mobility needs, and so the way I thought I had arranged my classroom and the centers, I thought it would work well. And then the student came in and I realized, oh my goodness, they can't access the block center easily or the easel that I placed here is really preventing them from getting to their cubbies.   01:14:00:21 - 01:14:29:18 Speaker 2 And so we needed to make some arrangements. So it helped me figure out ways that we can even just adjust being so that so that the burden or not the burden, the fear of that access of not having access is gone so that we make our environment completely accessible. It gave the parents and I am I always invited the school team that be working with the with the students as well, including my peer educator.   01:14:29:20 - 01:14:49:20 Speaker 2 It gave us time to chat, to get to know each other and to start building that relationship. As an educator, I think one of most important things is to build relationships not with just our students, but with our families as well. And so it gave them a chance to get to know me a little bit better and gave me a chance to get to know them.   01:14:50:00 - 01:15:10:07 Speaker 2 I think, Erin, you were talking about giving the resumé. I used to have them fill out this form of what's the favorite food where you know, what shows to be like with their toys, like who lives in the house. Siblings names are one pager on the undetermined website can also be a great tool for that and you can fill it out as a family.   01:15:10:07 - 01:15:35:18 Speaker 2 So you can talk about here's the family strengths, here's our family's preferences, here's our family's interest. Then here are our needs. Like this is our need of how we need communication right now going into this, how we need to know that services are being met. I know that as a parent myself, like when I drop my child off to daycare for the first time, I needed a picture of my child smiling within the first hour.   01:15:35:18 - 01:15:54:03 Speaker 2 If I could get it. And so even just stating that, like I need at least one picture during the day so I can see my child is safe and is doing okay, and so you can fill that out on your student, but fill it out as a family as well, I think is really important.   01:15:54:08 - 01:16:17:04 Speaker 1 That is a really great idea. I think, especially with the younger kids, because you do need that context. And I also want to say you mentioned the word burden, Meg, and that is something that I talk about a bit because I think people outside that don't live our lives see our children as a burden. But I think in the context you used it in the context that we feel it our children are never a burden.   01:16:17:04 - 01:16:28:03 Speaker 1 It's the it's the lack of universal design, It's the lack of access, it's the lack of ramps, it's the lack of understanding society's the burden, not our children.   01:16:28:05 - 01:16:50:01 Speaker 2 Yes. Yes, it is. It's and it's more of the burden of how you guys are feeling of all this is one more thing that I have to worry about, that my child's not going to have the access that every other child in that classroom has. And so to take that burden of worry off of the parents, I think is important.   01:16:50:01 - 01:17:12:22 Speaker 2 I was recently in a training in which our presenter made and I wrote it down because I have been carrying it with me now, made a wonderful point of our children can be ready for anything that we put them in. It's the environment that we have to make sure that is ready for for our children, and that falls on us as the educator.   01:17:12:24 - 01:17:34:21 Speaker 2 And I love that. So that's making sure again that we are able to access the blocks and the cubbies that we have, everything that we need for all of our students to be able to participate and the support that they need and that we're making our families feel welcome and comfortable in the environment as well.   01:17:34:23 - 01:17:58:00 Speaker 1 Absolutely. I have one more question that has to do with early childhood that I was just having this conversation with my family last night because we were talking about I'm determined, we were talking about self-determination and I was talking about regrets. And one of my biggest regrets with my son is his amazing preschool teacher. She was amazing in the most understated way.   01:17:58:01 - 01:18:22:18 Speaker 1 And she confidently told me, because if you have a disability, you can start in Virginia preschool at the age of two. And so he did. And he wasn't quite potty trained yet. And it was a huge source of anxiety for me. And she confidently said, I got this, just send him in his underwear. But I was so worried about him having an accident on the bus that was like, no, he needs to, you know, No, I want to.   01:18:22:20 - 01:18:43:12 Speaker 1 And it's a huge mistake because an accident on the bus in preschool is much less of an issue than an accident on the bus in grade school or fourth grade developmental delays just mean that that stuff comes later. What do you wish you could tell parents to ease their minds and have a little trust in that school team?   01:18:43:14 - 01:19:16:17 Speaker 2 I always ask them to let me know their concerns. If your child having a bathroom accident is really causing angst and anxiety, be honest with the school team because then I can say we got this because not to get into a potty training discussion, but early childhood teachers. Bye bye trade. Potty training is what we do. And one of the most meaningful IEP meetings I think I sat in is when you get to the the part and you say, okay, where are the parental concerns?   01:19:16:19 - 01:19:42:05 Speaker 2 And the parents pulled out a list multiple pages long. It was so important for them to list all their concerns, whether it related to the IEP or just a concern for their child in general. And I think especially as an early childhood educator, we we have that time to sit there and listen to them and say, all right, what can I take off of you?   01:19:42:05 - 01:20:02:01 Speaker 2 Because that's really that's a lot to say. Okay. Let let let us absorb a little bit of that because we got this. So I just would say be open and honest. And I know that's easier said than done. Has that. That can also be really anxiety provoking if you feel like you can't be open and honest again with your words.   01:20:02:01 - 01:20:13:22 Speaker 2 Then again, kind of all, I keep going back to the one pager, but that's where maybe those needs may be a really good place to write down some of the concerns that you may have.   01:20:13:24 - 01:20:37:21 Speaker 1 I totally agree. And I think both one pagers and IEPs are where you need to have things and the important thing is there's a difference. The IEP is legally binding. The one pager is not. So anything that you want to ensure absolute happens at school has to be any IEP. The one pager is a really good resource to just get to know a student.   01:20:37:21 - 01:21:08:21 Speaker 1 One thing that I do for my son is, you know, you talk about writers and rock stars or movie stars, how they have the requests of ridiculous only Green Eminem's or only green and blue because they want to make sure that whoever is handling it read it. So I actually put a couple nuggets as like my son's writer to see if someone reads it, because there's a couple of really cool things that would be absolutely brought up in conversation if it were read and there's been quite a few times it hasn't.   01:21:09:00 - 01:21:19:11 Speaker 1 And so I find that that's important, I think as well. And I want to move to talking about the IEP. How do you prepare the team? How do you prepare the IEP for that new school year.   01:21:19:13 - 01:21:43:12 Speaker 3 As I mentioned earlier, is that I start preparing the winter ahead of the school year. So if my daughter's starting into first grade next year, I start preparing the winter of her kindergarten year. For me, what I always found to be very helpful is and this is kind of both, it's it's helping prepare for the IEP team, but it's also preparing the special education teachers that are involved in her plan.   01:21:43:12 - 01:22:04:10 Speaker 3 And then ultimately, it'll help the teachers, you know, as we get closer to the upcoming school year. But what I would do is I would go on to the Department of Ed's website and look up the curriculum and the standards of learning for the upcoming year. Some people might think that I'm a little over the top with that, but it was so helpful.   01:22:04:12 - 01:22:25:23 Speaker 3 I would print it out for each subject and then I would go through it and make notes. I would think about, okay, how is my child going to access this? How is she going to learn X, Y, Z in the course? You can't address every single thing, right? So ultimately, I would try to narrow it down to the heavy hitters of what I thought was important and it would make the biggest impact.   01:22:26:04 - 01:22:52:22 Speaker 3 A lot of times it covered many things. Then I would start researching what would a goal look like, right? And I would make notes on ideas for goals and I may not write it out word for word, but I would have a bullet list of what some of the goals might look like. I would research what kind of devices or technology low tech 3D items might be helpful in supporting her, learning the various things.   01:22:53:00 - 01:23:18:01 Speaker 3 And again, I would make a list. And that list, when we had our IEP meeting, it started out with when we had our IEP meeting, I would take that list with me. I would ask our teacher for the visually impaired because usually that with a student who is blind or visually impaired or a deaf blind, the teacher for the visually impaired is often in charge of ordering a lot of the materials, educational materials for the student.   01:23:18:01 - 01:23:40:20 Speaker 3 So I would hand a list of items to her to order and we would discuss all of it during the IEP meeting. But it got to the point with our team where we just became so comfortable with the routine that the teacher for the visually impaired and I would have a pre-meeting. There were a couple pre meetings where we would discuss all of that and even craft out some ideas for goals.   01:23:40:20 - 01:24:07:21 Speaker 3 And then that way when we met as a full team, it just went a lot smoother and was a lot, a lot shorter. But that was really, really, really made a huge impact in many ways. One helping to prepare for the IEP too. I knew what my daughter was going to be expected to learn. Three The team knew I was an involved parent, right?   01:24:07:23 - 01:24:12:15 Speaker 3 So that's the way I handled it.   01:24:12:17 - 01:24:45:03 Speaker 1 Dawn, this is such a great strategy. I'm always taken aback by how, even though I've done all these trainings and I've been doing this for a long time and conferences and books, I learn something new and sometimes it's from someone I've known for years and we've just never talked about this. I wonder, though, what about those students who aren't at grade level who aren't going for the standard diploma, who are in middle school but doing kindergarten level work because they're just not there yet?   01:24:45:09 - 01:24:50:03 Speaker 1 How can they utilize the things that you're talking about?   01:24:50:05 - 01:25:07:20 Speaker 3 I would still say looking at the standards of learning overview, right? So I just want to be clear that we're not talking about looking at like a nasal test. You know, you're looking at the standards of learning overview, you're looking at the breakdown of the curriculum because I can't remember the details, but I could pull different things from each document.   01:25:07:24 - 01:25:28:09 Speaker 3 But taking a look at that and then and then thinking about what makes sense for my child. And so maybe it's not everything that's on there. Maybe it's only one thing from each section. How would that be modified for your child so that it made sense and was meaningful? That's the way that I think you could approach it that way.   01:25:28:09 - 01:25:41:20 Speaker 3 You're still looking at what is everyone else in the classroom or what does everyone else at that grade level being exposed to and you finding a way to make that meaningful and inclusive?   01:25:41:22 - 01:26:01:17 Speaker 1 Meaningful is the key word there, Dawn. I think a lot of times and I've written about this and I've talked about it, we do inclusion for the sake of inclusion without providing the supports and materials needed for it to truly be inclusive. And I think meaningful is key. Meg, what do you see in your work where you see meaningful inclusion.   01:26:01:19 - 01:26:39:19 Speaker 2 Meaningful inclusion? I mean, it is more just than to have a spot in the classroom. It's that and meaningful intentional modifications and supports and opportunities for interactions. When Dawn was talking, I was thinking about a student that we had one year that when it was time for her to start transitioning out preschool into kindergarten, there was a large discussion around Lori and moving either from my fully inclusive preschool classroom at her home school to a different classroom, a more self-contained classroom in a different school, the parent said, Absolutely not.   01:26:39:20 - 01:27:05:12 Speaker 2 We want her to continue to be in her home school. I said, Absolutely not. She needs to continue to be in her home school. And there were questions of, well, then how are we going to write an IEP to address the needs with the swells? So then what I did is I got with her new case manager for kindergarten, and we looked at the soils and we looked at the one that sticking out my mind is the literacy of the well.   01:27:05:12 - 01:27:34:20 Speaker 2 And we were talking about learning about characters and plots and settings and we're like, okay, we can do this. It's just we're going to modify it and we're going to adapt it. We are not changing the content that she is learning. We are modifying how it's being delivered. We are modifying how she's going to demonstrate that she has learned it, but she is still learning the same information and that her peers are learning.   01:27:34:20 - 01:27:58:01 Speaker 2 And I think that we talk about IEPs and we talk about inclusion. We are providing the same opportunities. It's just the way that it's being presented. We all learn differently. I mean, I take that information much different than my husband. My husband is a walking calculator in his head. I'm the one that still pulls out my phone when we have to tip somebody and typed in the calculator.   01:27:58:01 - 01:28:19:20 Speaker 2 And so I think we often forget that we all have very different learning modes in the ways we learn. And so I think for parents to ask and maybe to look at the Sols and do what I love, Hamilton said that she went through them and looked at them. I had a guardian one year, two years in preschool.   01:28:19:20 - 01:28:43:03 Speaker 2 I get I love most of the time I had the children two or three years, but she had a binder and when I had her grandson, the binder was really, really small. I just went to his fifth grade graduation and in May, and she said, The binder is now this big. But she kept everything. She kept notes, she kept her own notes and documented what was said in the IEP meetings past IEP.   01:28:43:03 - 01:29:06:04 Speaker 2 She came with questions. She did her research. When Dawn was talking earlier, a tip I thought was every single meeting. We said, okay, well here, would you like a copy of your rights? She said, Absolutely. I know parents are, and family members may get tired of having that. I don't know if it's a purple booklet or not, but a copy of the rights.   01:29:06:06 - 01:29:11:08 Speaker 2 But I think saying, Yep, I want it because I know that I have rights.   01:29:11:10 - 01:29:12:01 Speaker 1 It sends an.   01:29:12:01 - 01:29:42:08 Speaker 2 Important reminder sometimes to the IEP team that as family members you are an equal part of that IEP team. Your voice matters, your questions matter, and and it's not educators versus families. It is truly a equal partnership and a team. And I think sometimes the same. You know what I have I guess I have rights too, and I have questions about that or I I've looked at these souls and I want to figure out how was this goal that we are creating?   01:29:42:08 - 01:29:46:17 Speaker 2 How's that going to support my student and meeting that?   01:29:46:20 - 01:30:16:11 Speaker 3 So I was just going to add one little thing to that as it just bubbled up in my mind. It's one of my big passions, but something you said triggered it. When we think about looking at those standards, we're thinking usually math, science, history, all of that. But almost every division or every system across the United States, somewhere on their website, or at least if they don't have a piece of the website, they've got it somewhere.   01:30:16:13 - 01:30:37:15 Speaker 3 Is also there standards for technology instruction. And that is in this day and age, just as important. So I just wanted to add and I'll talk about that I'm sure some time during our conversation, but I just wanted to add that other little tidbit is when we're thinking about looking at those standards is don't forget about the technology standards.   01:30:37:15 - 01:30:38:13 Speaker 3 Right.   01:30:38:15 - 01:30:57:18 Speaker 1 What struck me, Meg, as well is you pointing out how important the family is on the team. I like to say that the most important member is the student. The second most important member are the parents or caregivers that are involved because they're the ones that live it and experience it and see it.   01:30:57:20 - 01:31:25:10 Speaker 2 I think that, yes, that the student is the most important member. I, I had somebody asked me recently, how many times did you have a student show up at your IEP meeting? So I said every single time, because I think even in preschool, having the student be present, I was that teacher that be walking down the hallway with like all these boxes of manipulatives and toys and coloring things because we were going to play if we had to.   01:31:25:12 - 01:31:48:03 Speaker 2 Having the student present brings back the human aspect and brings back why we're here and that that's important. You know, I don't take my child to the pediatrician's office without my child present there. They're there. They're having a conversation at the pediatrician with me. And I think that the child should be present in the IEP process as well.   01:31:48:03 - 01:32:12:06 Speaker 2 And even in preschool. This is a plug for a different time. They can start being involved. You know, again, they can say during their present level, their strengths. They can say, Hey, I'm really good at running, or they can point to things that they like, or they can show pictures or they can draw, they can have a voice in that IEP process.   01:32:12:06 - 01:32:19:03 Speaker 2 And I don't think it's too young to have them start having a little bit of a voice in their IEP meeting.   01:32:19:05 - 01:32:55:15 Speaker 1 I totally agree. I think having your child, your loved one students attend from the get go is really important and I want to remind people that they might not be able to participate. But being there is important because I know sometimes I'll hear stories about a parent helping a child do a whole PowerPoint or, you know, presenting at their IEP meeting, and that stuff kind of hurts some people to hear, If I were to do that for my son, that would be just more work on me and he would probably fight it because of overwhelm or whatever.   01:32:55:17 - 01:33:13:15 Speaker 1 But being there is enough. I hope that whoever's listening when you hear this, you take what you need from it and you don't feel like you're not doing enough. Because I know that parents are doing enough and we carry the world on our shoulders and that's stress. And I wish someone could go back and tell me to enjoy my kid.   01:33:13:17 - 01:33:23:11 Speaker 1 So I think everything you're hearing now, okay, yes, try to do it, but also do what you can and just be a parent and live your life, too.   01:33:23:13 - 01:33:45:16 Speaker 3 I'm glad you said that. I wanted to add how important that is to recognize as well. There were years I've always been a really involved and pretty intense parent, but there were years speckled throughout where I didn't do quite as much for whatever reason, what whatever was going on with our family, you know, there would be a couple of months period where I just had backed off.   01:33:45:20 - 01:34:05:16 Speaker 3 I needed to I needed time to kind of recenter myself. I was noticing maybe something not going well at home or whatever, the kids, whatever the reasons. So I just wanted to validate that statement and how important it is to also recognize your own mental health and your children's mental health through the process.   01:34:05:18 - 01:34:23:17 Speaker 1 Yeah, I think we forget that sometimes we push and I have to remind myself how stressed I feel and I'm able to say that and verbalize it, but my kids can't. And so when they're like, I don't want to do it or, you know, behaviors, communication. We have to remember this is hard for them, too.   01:34:23:19 - 01:34:56:24 Speaker 2 And I'm glad you guys brought that point to because I wanted to make a point. And again, my perspectives, early childhood, perhaps sitting at a long IEP meeting for children for any early childhood age student is really tough. And so as a parent, if you're feeling uncomfortable that your child may start to struggle and may start having communicating that they don't want to be there anymore and then maybe work out with the team, hey, can can we figure out a way to do this where I can have somebody come pick up my child or can we take a break?   01:34:57:03 - 01:35:19:02 Speaker 2 There were times that I would ask the family or, Hey, are you comfortable if I get my educator to come and we'll take the child back down to the classroom OR do we just need to go to a different space so that when some discussions need to be had, that the parents then also feel like they can fully focus on the discussions that are being had.   01:35:19:02 - 01:35:27:22 Speaker 2 So I think it's it's also finding the comfort level that's best for you and for your family and communicate that with the IEP team.   01:35:27:24 - 01:35:54:01 Speaker 1 Yeah, and I think it's very important for the students to be in the meetings. But sometimes parents caregivers need to discuss something with the team that the student probably shouldn't hear. Unfortunately, we do have to have those conversations, but having the student there, at least initially it does, humanizes it, especially if it's a contentious relationship. Which actually brings me to my next question, which is what are some of the biggest challenges you face?   01:35:54:01 - 01:36:15:18 Speaker 1 And I know that I had a really tough time when my son was in kindergarten and first grade. We have since moved, but we lived in Northern Virginia at the time and he was the first kid in his elementary school with Down's syndrome to be in the general ed classroom. Everyone else was put in an ID classroom, an intellectual disability classroom that was literally the name for it.   01:36:15:20 - 01:36:40:00 Speaker 1 And so in kindergarten, it was a little bit of a fight to get him in general. ED But it happened. And I remember having conversations with the speech therapist who was not so gently pushing and saying, Oh, what about the classroom and the first grade team? I would get calls almost every day to the point where I still get a call from the school, and I think it's going to be negative.   01:36:40:03 - 01:37:01:23 Speaker 1 It really felt like they were building a case to move him to a self-contained classroom. Thankfully, I have done, like you were saying, we have the training and the education and the time to advocate strongly and fiercely. But I know so many parents who want their kid in a general ed classroom who are denied it. They don't even have a chance.   01:37:01:23 - 01:37:24:18 Speaker 1 The school, their interpretation of the law is that this student is self-contained and maybe they push in for this and this and this and that in the schools mind inclusion that's a personal challenge and I handled it by being tough. But that was years ago and I still feel that it still hurts. And part of the reason I do this work is because I know families are still dealing with that.   01:37:24:18 - 01:37:38:18 Speaker 1 And it's devastating to me that we can't include kids in a meaningful way or just at all. So, Dawn, what are some of the challenges that you faced and how did you handle them?   01:37:38:20 - 01:38:00:03 Speaker 3 So I have to laugh because we had the same experience, ironically, with a speech therapist when we were trying to decide on or when we were having our transition meeting from early childhood to kindergarten, you know, and I was pushing for the regular education classroom and the speech therapist was the one who was the most vocal. So I just think that's kind of funny.   01:38:00:06 - 01:38:37:24 Speaker 3 In fact, when my daughter graduated, I actually tried to look her up because I would just send her a letter. But anyway, that was a big challenge. When I think back about it, trying to advocate for her home school and, you know, the mainstream classrooms versus self-contained. But I think the biggest challenge that we had was technology, the accessible technology, accessible digital materials and access to a qualified instructor, someone who understood the software that she needed to use as well as what was going on in the classrooms, like understanding it from an educational standpoint.   01:38:38:01 - 01:39:02:19 Speaker 3 There were a lot of instructors that teach the assistive technology that she uses that are not involved in education and that just we did try that, but that didn't work out very well. You know, I started advocating for instruction in the technology I'm speaking about is screen reading technology for people who are blind. And there's also magnification software that's very similar for people with low vision.   01:39:02:23 - 01:39:41:10 Speaker 3 So I started advocating when she was in elementary school. Really, if I think back about it, I wish I would have pushed harder for more intense instruction. She would get like a couple of weeks in the summer. You know, we would generally get that in elementary school during my extended school year services. And of course, if she didn't use it and nobody could support her throughout the school year, she lost the skills and so we'd have to revisit it when she entered sixth grade, that is when there were several school divisions in Virginia who had started the pilot program of going into the I think it was the 21st century learning skills or learning platform   01:39:41:10 - 01:40:03:21 Speaker 3 at that time is what it was called, basically where students were given laptops and they started to move to using all digital materials, digital assignments versus paper assignments, and nothing was accessible with her screen reader. That was the one time it really got intense and I had to start, okay, let me buckle down and make sure everything's in writing and advocating keeping my documentation.   01:40:03:23 - 01:40:25:14 Speaker 3 And it was a year and a half before it was resolved, which really when I think about what some other parents have to deal with, that wasn't very long. But I swear that year and a half it almost broke me. That was the toughest year. Those were the toughest years. I really thought I was going to have the breakdown.   01:40:25:16 - 01:40:43:13 Speaker 3 I don't think there was a day that went by that I didn't cry. A yanked my daughter out of school, moved on to homebound, eventually ended up having to get attorneys to get it resolved. And we did. They settled with us and we ended up getting everything we needed. And they put things in place to correct the actions within the division.   01:40:43:15 - 01:41:06:24 Speaker 3 But I wasn't going to back down. You know, my daughter was sitting in a classroom not understanding what was going on and not having instruction and even how to access the things that she needed. So. Right. I don't know. That was I kind of lost sight of your question, Erin, but that that was kind of that was the toughest period of time for us in how we handled it.   01:41:07:01 - 01:41:31:17 Speaker 1 It's wild to me, Dawn, because your story is one of many. These are matters of access and families and students aren't even able to access education. I know. I mean, we think about our personal examples, right, because of what we live in, our lived experience. I mean, you think about students who need nursing support during the day, but you have a nursing shortage.   01:41:31:17 - 01:42:08:18 Speaker 1 So if there's no nurse, that student can't go to school. And that happens when we're talking about communication devices and the lack of understanding how to get those to students and finding something that actually works for a student, it's shocking. I constantly think about why we're not teaching American sign language in schools as a secondary language. We're turning to packs in all of these forms of communication, and when we have one, there are students who could use ASL, but instead we're doing cumbersome card things that they tell families, Oh, just take this home.   01:42:08:20 - 01:42:32:06 Speaker 1 Who who can live their life carrying around a deck of cards while you're trying to do something? I've tried it. It's ridiculous. Even the iPad sometimes to help. It's these ideas that are thrown without any thought or consideration for what our life is about and the things that started school that go beyond or the fact that schools just aren't accessible.   01:42:32:08 - 01:42:54:01 Speaker 1 Hearing loss and the fact that we don't have microphones readily available in schools at one point when my son was dealing with hearing loss and I was trying to get hearing aids, but it wasn't there yet, and the audiologist said you should have the school get an FM system, which for anyone who doesn't know, it's the system that helps amplify for a student with hearing hearing loss.   01:42:54:03 - 01:43:28:11 Speaker 1 And the school claimed that they don't use FM systems anymore when in fact they very much do and they're everywhere. And he uses one now, just these roadblocks that are there because of misinformation and this breakdown in higher education where our educators are not educated in special education and universal designs for living and learning. And here we are as parents and individuals, spending so much time fixing things that shouldn't be a problem.   01:43:28:13 - 01:43:43:01 Speaker 1 Okay, so now I'm just venting. But I mean, it's there. And I guess I just want to validate anyone who's listening, like everyone deals with it. And there are people trying to fix it. Meg, turning to you for some of the biggest challenges, I guess maybe you haven't faced, but you've seen.   01:43:43:03 - 01:44:06:09 Speaker 2 I wanted to touch base real fast on what you were saying about higher ed because I demonstrated this in the beginning, but I also adjuncts some here at James Madison University, especially for James Madison University, he has an inclusive early childhood educator program. So they are educating future teachers to be duly endorsed in early childhood and early childhood special education.   01:44:06:11 - 01:44:31:00 Speaker 2 And one of the things that I have been working with, with a group of students is understanding and making that universal design for learning nature and to set up your classroom so that if you have a student who is using a communication device or an alternative form of communication, it is not just that one student that is using it, but it's everybody.   01:44:31:00 - 01:44:55:11 Speaker 2 So we're not singling out anybody that we are really making a classroom that has a total communication system, whether we have corps boards, if we have pictures, if we have signs, if we have English language learners, we have multiple languages posted in our classrooms so that we're really working on making this space as accessible to everything single learner.   01:44:55:11 - 01:45:22:19 Speaker 2 And I think that's where when we talk about higher ed, that's where we really need to start, because one of the challenges I think that I experienced the most was transitioning students out of my classroom into kindergarten, into those general ed settings, because the teachers had not had the training and they didn't feel like they have the knowledge to support that.   01:45:22:19 - 01:45:50:01 Speaker 2 The students that were coming and that was causing them angst and anxiety. So we started having transition conferences in February and we would start breaking down what they need. And then I would even support the student a little bit into the beginning of the year to check in with the kindergarten teacher, to check in with the kindergarten case manager to make sure that things were put in place.   01:45:50:02 - 01:46:13:07 Speaker 2 If I had things that I used that if I could pass them along, I would pass them along so that things were consistent. But I think it's sometimes the lack of the lack of learning. We have professional development that lots and lots and lots of things in education. We haven't really touched base a lot on that universal design for learning and that support it.   01:46:13:07 - 01:46:20:07 Speaker 2 And I think that's something that as an education system as a whole, we need to work on and address.   01:46:20:09 - 01:46:51:13 Speaker 3 It benefits everyone. It makes me think of the handful of teachers that we've had experience with over the years and they always stand out that have had some of that training in a variety of ways. But you can tell and it it impacts and impacts everyone in that classroom. Everyone, when I think back, I could actually see it with the elementary school students as well with this one teacher that is popping into my mind, but they are naturally supporting each other as well.   01:46:51:15 - 01:47:17:03 Speaker 1 It's funny you say that, Dawn, because I remember when I moved. So I live in upstate New York now. We relocated from Virginia and when I moved and left that very much not inclusive environment and my son started elementary school up here. He got invited to a birthday party for the first time, and I truly believe it was because they could feel that inclusiveness from the teachers.   01:47:17:03 - 01:47:33:16 Speaker 1 The students did and they belonged. Whereas before he was in other. And it just is there. It's not just the practices, it's the mindset. And if we can shift those mindsets, that's what is that really huge shift?   01:47:33:18 - 01:47:34:19 Speaker 3 Absolutely.   01:47:34:21 - 01:47:36:12 Speaker 1 Yeah.   01:47:36:14 - 01:47:59:23 Speaker 2 And I think for me that's been one of the biggest challenges too. I am a self-proclaimed inclusion ist. I often don't know. I'm learning in my in my new position. I had no other kind of professional experience other than full on inclusion. My view, my my way of thinking of like, well, why can't we include them? Why can't we modify things?   01:48:00:01 - 01:48:25:21 Speaker 2 Why not? But I recognize that that's not always the mindset. And so I think one of the biggest challenges is overcoming that. I was thinking earlier about how we overcame one of the challenges. We were transitioning that student from preschool to kindergarten. In the kindergarten team said, Well, you have you have a peer educator with you all day long.   01:48:25:23 - 01:48:44:12 Speaker 2 And so they get that one on one support. And so what we did is that we took the preschool schedule, we took the kindergarten schedule, and we highlighted all the places that that student was really getting. One one support, which was very little. And then we looked.   01:48:44:12 - 01:48:45:18 Speaker 1 At.   01:48:45:20 - 01:49:10:08 Speaker 2 The kindergarten schedule and said, okay, well here, here that areas that the student would need support and oh, well, you know, one of them is just getting from the bus to the classroom and we have lots of adults in the hallway. So how can we solve that? Oh, and then look upon this. This will be solved by the speech language pathologist coming into the classroom and providing services.   01:49:10:08 - 01:49:32:05 Speaker 2 And oh, look, this is the time that the special educator coming into the classroom can support this. So it's really not this intense need. And then look at all the peer support. Let's let's look at the peers and the friendships that they have made and let's put a couple of those peers that can support the student into the classroom.   01:49:32:05 - 01:49:58:09 Speaker 2 And I think once you start looking at it from a different lens, that helped, but that shifted, it come causation of, well, there's no way we can support the student too. Okay, I think we can do that. I think sometimes it's just taking a step back, taking a moment and breathing and saying, okay, let's change the lens, to change, to focus on how we're looking at it.   01:49:58:11 - 01:50:22:08 Speaker 1 Something I will say to my son's school team over and over again is my son is going to learn more from his peers than he will from his teachers. So he needs to be included in a general, a classroom, a self-contained classroom is not what the real world looks like. So why are we doing this now? If school is to prepare them for life, then why are we putting them in this little bubble?   01:50:22:10 - 01:50:42:10 Speaker 1 I don't want that. So my son may never be at grade level. A student may never be at grade level. You can still modify the work and you can still have them with their peers, and that's critical for their life after school, which is much longer than your life in school. But it's hard for people to understand that this they don't live it.   01:50:42:12 - 01:51:07:04 Speaker 2 Well and their peers are the ones that are going to continue to follow them, not their teachers. Again, I think all these stories I'm telling, I'm thinking those of my students and in my mind, they're still preschool age where they're not anymore. They have outgrown the need for Mr. Ruga, and that is wonderful. But their peers at that same network of peers that follow them.   01:51:07:06 - 01:51:38:00 Speaker 2 And so I think it is important that we work on having that support from the get go. Research shows that inclusion and having inclusive environments builds more empathetic learning communities, builds an understanding for peers with and without differing abilities. It just benefits everyone. And I think that's the mindset that we have to start shifting towards.   01:51:38:02 - 01:52:04:07 Speaker 1 Yes, and their peers are going to be the ones hiring them when the time to come to employment happens. Inclusion in school is what will lead to inclusion in life. And it's interesting to Meg, you mentioned quite a while ago now, but you you reminded me of the handling of the baton from one year to the next. And Dawn, I'm curious if you had to do this every single school year, you have to do it all over again.   01:52:04:09 - 01:52:22:23 Speaker 1 And this is one of those other frustrations when we talk about universal design, simple things that you request. One, you're like, Hey, there's sensory issues. Can we put tennis balls on the bottom of the chairs so you don't have to hear that? Or, hey, can we get better lights than the fluorescent ones? Because that's really disruptive sensory wise.   01:52:23:00 - 01:52:39:00 Speaker 1 Not only does that benefit everyone, including the teachers, and if it was just a best practice within the school, you wouldn't have to redo the whole thing every year. I mean, it's like a broken don. Have have you felt that in your years.   01:52:39:02 - 01:53:06:15 Speaker 3 Now, which part? Yes. So I think that where I saw that broken record piece the most was in middle. I'm not sure why that was. I mean, yes, we had to revisit things every year, but and I saw this with elementary school and then again with high school is that those first couple of years in that school, it was definitely intense.   01:53:06:17 - 01:53:29:03 Speaker 3 But after a couple of years after like the first two years, the teachers, the up and coming teachers, most of them were already familiar with my daughter, you know, seeing her in the hallway and as she's changing classes or whatever and talking to other teachers and seeing her at events and things like that. And she was a very it still is a very social child.   01:53:29:03 - 01:53:46:14 Speaker 3 So everybody's her friend. And so a lot of times she knew these teachers that she was getting. And so there was a little bit of BPD in preparing, but not as much. And the other thing is same thing with the students. They had gotten to know her. Now we we moved to a different county when she entered high school.   01:53:46:14 - 01:54:09:03 Speaker 3 And so that was kind of like starting over in a new division. But as we got settled in the students, she was in their classrooms. They got to know where they were, the ones who could step in when there was a substitute teacher. Right. Especially as we faded out, the poorer support students would step in and be like, Oh my gosh, you're having a computer problem here.   01:54:09:04 - 01:54:27:09 Speaker 3 Let me let me help you with this. Or oh my gosh, did did so-and-so teacher might have forgotten to share the accessible document. And this happened one time that I remember. And my daughter is using her smartphone to text me from school. She's panicking, right? And then I get another Texas. Oh, no worries. So-and-so fixed it for me.   01:54:27:09 - 01:54:36:21 Speaker 3 One of the other students just, bam, got it done. Senate emailed it to her. It was taken care of. I don't know. Again, I've forgotten your question.   01:54:36:23 - 01:54:48:04 Speaker 1 No, you answered it. You did? It's. Yeah. How do we make sure the IEP is being followed? Dawn, I'm going to turn to you first. Again.   01:54:48:06 - 01:55:12:10 Speaker 3 This is actually become like a little bit of a concern for me in regards to the topic of homework. That was the best gauge for me in knowing whether her goals were being addressed. Maybe that was because so many of her goals were around literacy, because she was learning Braille and learning the Nemeth code, which is the Braille math code.   01:55:12:12 - 01:55:36:24 Speaker 3 And I'm thinking again, mainly elementary years is what I'm referencing to now. But having her work and doing that with her is how I was able to know a lot at the time if things were being addressed. Her communication skills also kind of gauging how that was improving. And I could tell based on the way she was responding to things if that was being worked on.   01:55:37:04 - 01:56:01:07 Speaker 3 Yeah, I mean, her work for me was the biggest part. And again, like kind of like I referenced earlier, I was a little bit over the top. People might have thought of me as a helicopter parent, but I felt like I needed to be to be able to know again if those goals were being addressed or not. Then as she got older, it was asking questions like always trying to know throughout all of the years what was being worked on.   01:56:01:07 - 01:56:19:05 Speaker 3 And I might have asked the teacher like, Hey, what are you guys doing this week at school? You know, I might ask on a monday or something like that. And then I'd ask my child questions about it. So having that conversation and then when things moved to digital as she got older, I kept things logged in as her.   01:56:19:05 - 01:56:40:22 Speaker 3 So I had access. I didn't do her work or anything like that, but it was my way of being able to see one. How things being presented to her too. Was she able to submit them? Was she able to complete them? How did she complete them? Where again, I didn't look at every single thing every single day, but at least every couple of days.   01:56:40:22 - 01:56:49:06 Speaker 3 I was as she got older, I would kind of check in on things to see how she was doing. Right. Yeah. Well.   01:56:49:08 - 01:57:14:02 Speaker 1 It's interesting you say that because I keep thinking about how different everyone's situation is. I have to look at my son's IEP, but I think I have that no homework is part of his IEP because it is really difficult to get him to engage at home and for my family, which I know is in many families, I'm not able to ask him about the school day when I say Hello, how was your day?   01:57:14:04 - 01:57:41:00 Speaker 1 He's like, Thanks. And the cutest way. Like, really happy to see me. Arlo, How is school today? Thanks. That's his answer. And it's amazing because in his way, saying it was good and so for me to have a conversation with him will show me nothing about what's going on. So in my case, it is monitoring. And unfortunately I've had situations where there have been services that he has not gotten because of, again, there's been a lot of shortages.   01:57:41:00 - 01:58:04:09 Speaker 1 We're living still through unprecedented times with the pandemic and it's really changed things. When you have a child who cannot tell you what's happening at school, it's it's another layer of vigilance. And I have to be completely honest. I'm a strong advocate and I care deeply. But that is something I really cannot keep up with. I just can't.   01:58:04:11 - 01:58:20:15 Speaker 1 He's my oldest of three, two other kids, even though I have access digitally to what he's doing at school with those, what, seven different courses, I can barely get my job done. So how am I going to do that? So, Meg, maybe you have the magic answer.   01:58:20:17 - 01:58:48:23 Speaker 2 No, I don't think I have the magic answer. I'm trying to just think I have found each family was different. Each student need was different, and my preferences changed over the years. I often tell people all the time when I became a mom, I became a much different teacher. I understood that need for communication and really clear communication more once I became a mom.   01:58:49:00 - 01:59:25:17 Speaker 2 I also I never like to keep a journal back and forth because as tone can be really perceived really differently. So I always encouraged families. If you have a question, let's talk about it on the phone. I had a family that wanted to know because their child was not able to communicate what they did during the day. And so we worked out a form that either myself or my para and then whatever related service provider came in to the classroom just really quickly, a circle.   01:59:25:17 - 01:59:54:10 Speaker 2 So if speech came, speech came and circled. Hey, I came today. This is the amount of time that I worked on. And then we would just say, just put go two or three. Like, what did you address today in the IEP? And so that that way the family could see that we were still addressing the IEP goals. We had a student one year that it was really important for us to keep track medically the number of changes, how much fluid the student was consuming.   01:59:54:10 - 02:00:20:15 Speaker 2 And so we had a separate form for that. And then scheduling weekly or biweekly, even five minute check ins on the phone with the family. I'm a communicator, so I always like to really have clear communication. We also did progress reports, not just your IEP, but because they were an inclusive setting. I said, Nope, we're going to take the same.   02:00:20:15 - 02:00:51:00 Speaker 2 We did this authentic data collection for all the students. So they're also going to be observed through this data collection site that we have, and we're going to track learning and development the same way we're going to track all students because development, child development is a continuum. So it just may be a little different where your child is on the continuum, but you're going to get the snapshots of, Hey, today we worked on this and here's a picture of your child doing this activity.   02:00:51:00 - 02:01:12:19 Speaker 2 And this is what developmental milestones that we worked on. But that's early childhood. And I understand that that's not that's not upper elementary or middle school or high school. So I think I think goes to communication and figuring out what works best for you and for your teen, I think, is that that's the best way to go about it.   02:01:12:21 - 02:01:42:09 Speaker 3 Yeah, I think that's important. I mean, that is going to look different for everyone. And just to kind of circle back around to what I was sharing about the way I approached it was that always checking every single day or every couple of days know if there was a comfort level there, and I felt like things were progressing then I wasn't having to look every time, especially she got older, I would pay more attention when I was concerned about something and thinking that maybe something wasn't being addressed.   02:01:42:09 - 02:01:54:22 Speaker 3 And I did pay more in the elementary years as well. But again, as she got older, it was only if I was really concerned about a certain area.   02:01:54:24 - 02:02:19:00 Speaker 1 Yeah, I've got to agree to the communication piece is so critical. I think we hear this a lot, but there might be people listening who maybe not has heard it is document everything, paper trail, everything. You don't want to have that kind of relationship. But if it's if you're checking on something that's supposed to be in the IEP, you email it to the teacher, you copy whoever's necessary.   02:02:19:02 - 02:02:39:00 Speaker 1 And unfortunately sometimes they'll want to call you back with that information. And and okay, fine. But then say, okay, I'm going to take notes from this conversation and then I'm going to send them back to you. Can you make sure I got it right? Because you have to make sure that it's documented. And I think that's the best way to say you're on it.   02:02:39:02 - 02:02:57:23 Speaker 1 Another thing that unfortunately not everyone can do, but dropping your kid off at school or picking them up, depending on the age range, you might run into a teacher there, you might run into other people there. That level of familiarity as they see you, when occasionally or you know, for me it's frequent because my son walks to school, so I walk him to school.   02:02:58:00 - 02:03:18:15 Speaker 1 People are able to ask me a question that they're not comfortable doing via text or email. We're able to have those conversations just being present when possible, which I know isn't possible for everyone. We all work. You're not having a flexible schedule. It's not doable, but just trying to do that when you can.   02:03:18:17 - 02:03:44:08 Speaker 3 I used to do a drop off of donuts periodically and you know, it was funny. I used to drop them off sometimes to the teachers, but the office staff because the office staff, you know, they became really familiar because of that. This is back when I was having to go into an office and I couldn't do the driving in the morning and pick it up in the afternoon, but I could slide by periodically if I had an appointment that day and drop off donuts or fruit or something.   02:03:44:10 - 02:03:52:02 Speaker 3 The office staff told me more things than anyone I know.   02:03:52:04 - 02:04:14:02 Speaker 2 And I was going to and I don't know how you guys feel about this. And again, I would often tell my family's asked me, you know, if you want to see a datasheet, ask me it. It is my job. It is my responsibility to keep the documentation to show that we are working. So ask me for it if you have a question about it, let's tap.   02:04:14:03 - 02:04:40:05 Speaker 2 We always approach it again. Early childhood is a little different that IEPs are legal binding documents, but they're also fluid documents. And so if we're looking at a student and let's say they meet their goal, well then, then then have the right to say, Hey, guess what? I've noticed that my child's doing this. What have you noticed? Well, yeah, guess what?   02:04:40:05 - 02:05:09:06 Speaker 2 I want to meet because I want to change that goal and it doesn't have to be within that time period of the annual review like you had there. Right. As A parent to call that teen back to gather. And I think that from the education side is not always clearly communicated. But again, it goes back to that purple book of rights that you have the right to call the team together.   02:05:09:06 - 02:05:18:02 Speaker 2 And when you call the team together, guess what? They have to come together. And so exercising that right, I think is really important.   02:05:18:04 - 02:05:43:08 Speaker 1 I'm so glad you said that, Meg. I'm also glad you mentioned the data because it is a requirement. So I believe that that is probably the best measure If you're concerned about services and what your child's accessing, you can make it clear up front. I want a data sheet at whatever intervals. So how can caregivers help their child prepare for that new school year and of course, the new school.   02:05:43:12 - 02:05:45:10 Speaker 1 Meg, let's start with you this time.   02:05:45:12 - 02:06:08:07 Speaker 2 I think it's communicating with, if you can if you know the teacher, communicate with the teacher well in advance or asking the program coordinator or somebody for an example of the schedule, because if you look at the daily schedule and there's only one snack time and your child is used to snacking all day long, then figure out how can we work this in lunchtime?   02:06:08:10 - 02:06:34:24 Speaker 2 See if you can adjust the schedule so that lunch time matches. I do that as a parent Anyway, when Lizzie went into kindergarten, her lunch was the second to last lunch in the school, and so it's a very late lunch. So we started working that summer towards moving her time back. And we're doing it again this summer because now she has the very last lunch coming up.   02:06:34:24 - 02:07:09:09 Speaker 2 And so it's those little things of helping to adjust. I also told parents, I said, I know this is a silly, silly thing, but it's a school rule and it's a school policy. And so we're going to follow it to the best of our abilities. But we got to keep our shoes on. And so explaining maybe practicing with your child to keep their shoes on longer and then nap time, if you were transitioning to our preschool into kindergarten, I don't know how other school systems are, but our school system took away that rest time, so we started pulling back on rest time.   02:07:09:15 - 02:07:34:02 Speaker 2 And if your child really needs that three hour or two hour rest period, then then communicate that with the teacher. So that you guys can start figuring that out. If your child is a non rester, which is okay to start thinking about like what type of rest time bag or things that work well for your child that you can talk to the teacher about maybe providing.   02:07:34:02 - 02:08:01:02 Speaker 2 And so that helps them just have that quiet time when maybe other students in the class are resting. So those are little things. What is my favorite things that we used to suggest was? If the school has a playground, take your kid up to the playground and go play on the playground during the school year. Get used to being in the school, go walk around the school in preschool.   02:08:01:02 - 02:08:23:23 Speaker 2 We did family style dining, so we ate in the classroom and kindergarten. They had to start eating in the cafeteria and so looking in what the cafeteria looks like. So I think those are the little things. Reach out to your child's teacher. I know some people are like, Oh, I don't know if I like this, but I was a huge fan of home visits.   02:08:24:00 - 02:08:40:24 Speaker 2 So maybe see if there's a home visit or even if you can do a meet the teacher, maybe you want to go meet at McDonald's or Chick-Fil-A or on the playground somewhere so that you're starting to build that relationship with the teacher a little bit more as well.   02:08:41:01 - 02:08:42:21 Speaker 1 Dawn, what about you?   02:08:42:23 - 02:09:11:04 Speaker 3 Yeah, I would ditto everything that Meg shared. I think that preparing at the very least two weeks in advance, longer if you can, but with adjusting schedules, thinking about bedtimes, how much sleep is the child going to need to be able to wake up and function that next? So making sure they get adequate sleep and adjusting that bedtime and wake schedule I think is huge.   02:09:11:10 - 02:09:36:15 Speaker 3 Practicing some of the routines as well is very important maybe doing some dialog, some role playing. On if there's something that is very anxiety producing that you're aware of, you know, maybe doing some role playing ahead of time with the child as well. And again, like I said, everything Meg said, visiting the school, visiting the playground, all of that, as I mentioned before, and mapping out, you know, where their seat might be.   02:09:36:17 - 02:09:58:20 Speaker 3 What hall are they going to go down? Are they changing classes? And then the other thing that that is popping into my mind is preparing. One of the things that it actually took me a while to realize as a as a mom is that my kids feed off of my anxiety, right? I've done everything to prepare my kids.   02:09:58:20 - 02:10:28:18 Speaker 3 But if I prepare myself, if I'm rushing in the morning, if I'm stressed, if I raised my voice, that set them up for a horrible day. But if I was up and ready and calm and helped them get off to a good start, then nine times out of ten, they had a pretty good day. So I think that is something that is often overlooked as thinking about preparing ourselves as parents and thinking about how our energy affects our children.   02:10:28:20 - 02:10:54:24 Speaker 1 Oh, Dawn, spot on with that. You can feel it. You and it's the same in my house. I set the tone. I think the bedtimes are so important and starting to rotate those earlier. A big thing that we do is during the school year, no screens on on school days. So when it's getting close to school starting, we start to cut back that again.   02:10:55:01 - 02:11:22:20 Speaker 1 And especially no screens in the morning, no TV in the morning. And so leading up to the start of school, we cut that out again because it just just sets the tone. Even if you're kids older, I think the shows are important and getting them comfortable in whatever shoes they're going to wear, making sure their school clothes are comfortable because they've been in summer shorts with sensory issues and difficult with transitioning, making sure that the things they're going to take to school are familiar.   02:11:22:20 - 02:11:48:04 Speaker 1 So if you pack a lunch, it's that familiar, comforting lunch and snacks and making sure you intentionally show what's going to be in the backpack and what's where. A lot of people rely on social stories and they can be really useful, especially if they have your own pictures in them. I know that I send, even though this is sent to the school team, I'll send pictures family that they can put in the iPad or share in the classroom.   02:11:48:06 - 02:12:07:23 Speaker 1 So my son has something to talk about and feel engaged about. Anything to just add that comfort and take that anxiety away is so important. I know we're supposed to give our kids self-determination, all that, but for that first week, if I have to pack their bag for them to help that transition out the door be better, so be it.   02:12:07:23 - 02:12:31:15 Speaker 1 And wait for those special schools stringent rules. The next week. And then finally, because I think I forget this every year and I'm remembering it now after school, give them time to decompress because those first of weeks are exhausting and they're not able to tell us that they're exhausted. But I can feel it because my kids are typically cranky when they get home.   02:12:31:17 - 02:12:51:17 Speaker 1 They take it all out on me. And so it's just take a breath and I let myself be that punching bag, let them let it out on me. And then I give them a hug and go to bed early again and just remind myself that they're not able to express where they're at. So I just need to be that comfort station for.   02:12:51:19 - 02:12:52:19 Speaker 3 Yeah.   02:12:52:21 - 02:13:19:09 Speaker 2 I think Erin setting up opportunities for self care for everybody. I forget about it as an educator. My husband always the story of his first school year with me. I would come home and lay on the kitchen floor exhausted. There are so many emotions running. There's excitement there, anxiety. And as parents were also feeling that too, we always really just bring our house down a little bit.   02:13:19:11 - 02:13:45:20 Speaker 2 My husband loves to watch sports. I say, okay, sports are going off at a certain time. So we're not, you know, engaging in this real high energy level. We're going to calm things down and then give yourself some grace as a family to practice self-care and to feel all the feels that back to school has. As I often forget, even Lizzie will get real emotional changes.   02:13:45:21 - 02:14:06:22 Speaker 2 Difficult for her, change is difficult for lots of people. And so I have to recognize that at bedtime we're going to be we're going to be doing a little bit more comforting at bedtime and listen to all the woes of the world. Maybe, and giving our self just time as a family and grace to kind of just move through that transition.   02:14:06:24 - 02:14:07:18 Speaker 3 Yeah.   02:14:07:20 - 02:14:22:20 Speaker 1 My daughter, who's eight, really likes to listen to this meditation for sleep. It's like a ten minute. It really helps them to just center before bed. Dawn your kids are out of high school now, right? All of them.   02:14:22:22 - 02:14:24:22 Speaker 3 Oh, my God. I know.   02:14:24:24 - 02:14:39:08 Speaker 1 Oh, wow. If you could turn back time and give your younger self advice at various stages, who would you go talk to and what would you tell them? What? I mean, what version of yourself would you talk to? I don't mean who I mean. What version of.   02:14:39:09 - 02:15:17:08 Speaker 3 You? If I could go back, I think the first thing that I would tell myself through all the different years, all the different versions, parenting through this IEP process is to hang in there. It's worth it. Hang in there at various times. I would advise myself to practice more self-care. The earlier years. As I mentioned earlier, it took me a while to catch on about how my energy affects my children, and so those early years I would advise myself again to self self-care.   02:15:17:10 - 02:15:49:15 Speaker 3 Be prepared, stay calm. A lot of is pertaining to personal life. The one thing that is school related though, is that I would advise myself to have been more intense on technology assistive technology instruction earlier in the elementary years, right. Like kindergarten starting in kindergarten for screen readers for my daughter. But I think the biggest thing is, is the hang in there because it's worth it and you're going to get through this.   02:15:49:17 - 02:15:50:19 Speaker 3 You know.   02:15:50:21 - 02:16:14:16 Speaker 1 That's sage advice. If I could go back and talk to myself about school stuff in particular, I would talk to myself about ensuring more independence for my son. I was so afraid of him accessing education. I was so afraid of him doing something that someone would then, oh, he belongs in a self-contained classroom that I really push for one on one support.   02:16:14:18 - 02:16:35:13 Speaker 1 There's also the allotment and he runs off or he ran off a lot in a very dangerous way. And so there was there was actually a need for one on one. Support for safety is fast he bolts he needed someone that would always dedicate his time. And I did not trust the school staff to make sure someone was doing that.   02:16:35:19 - 02:16:57:22 Speaker 1 So I had one on one support listed in his IEP. However, like I mentioned earlier, not trusting a teacher to help him with the bathroom in preschool and knowing even though I told every single aide that he had please be a fly on the wall and just swoop in when you help. Their training is not that their training is to be helping that kid at all times.   02:16:57:24 - 02:17:09:01 Speaker 1 And I think it a disservice to have someone on top of your kid at all times. We're phasing that out now, but sometimes I really worry that it's too late or that I should have phased it out sooner.   02:17:09:03 - 02:17:38:03 Speaker 3 I would Ditto that. Erin. That is one other thing that I would, if I could tell my younger self is to really work on scaffolding out the para support or tapering out the Paris support scaffolding in her independent skills earlier much earlier. We eventually did it in the later high school years. And the other thing about that is that having that para there, I would have advocated for more training for the para as wonderful.   02:17:38:05 - 02:17:58:21 Speaker 3 She was the various ones we've had through the years about making sure that materials were adopted if they hadn't been adopted and providing access they also hindered friendships and hindered building independent skills. So yeah, it's a double edged sword. But yeah, that would have been something that I would have been more conscious of.   02:17:58:23 - 02:18:28:20 Speaker 1 Yeah, and I think we should both grant ourselves grace. Meg, maybe you have some input on this, but I think that that is also though a lack of proper higher education and training because that should be part of the support is teaching independence. There should be independence plans along with IEPs okay, so the teachers have the IEP goals, but whatever support staff is, there should have independence goals, but shouldn't all fall on the parents because some cases we're keeping our child alive.   02:18:28:20 - 02:18:52:22 Speaker 1 We're sending them with people we don't know. We see stories about abuse and this and that. It's terrifying when you have children who cannot speak, who cannot tell you what happened during the day. You want to know that there's someone there protecting them at all times. And I know one of my big fears of middle school was what if there are bullies What if my son's walking alone in the hallway and some someone just decides to hurt him?   02:18:52:24 - 02:19:06:19 Speaker 1 And so I think we do need to give our self grace. And I think this is to where we need to look to our schools doing better by this because parents, we put it all on our shoulders like it's our fault and it's not all our fault.   02:19:06:21 - 02:19:37:10 Speaker 3 No, I will I will add this and I don't know if Meg, if you have any ideas or anything to add to this. But again, one of those things that it took me a long time to to think about and figure out obviously a long time because it was high school before I really started thinking about it, figuring out how to craft goals, because we had been trying for several years to figure out how to train and help the parish understand how to fade out with various things.   02:19:37:10 - 02:19:46:08 Speaker 3 And so finally we had to craft specific goals and really spell it out for how to have the para fade out. I think that.   02:19:46:08 - 02:20:17:17 Speaker 2 Goes back to a lot of our parents don't get a lot of training. I know just speaking from some of the projects that we're doing in our office, we're doing lots of parent educator trainings. I always took it as the responsibility fell on me. My name was on the door. I was the responsible one. But when you're trying to facilitate a classroom of students and families, sometimes some of that parent educator time gets put to the side.   02:20:17:19 - 02:20:38:23 Speaker 2 But I also think as an education system, we can do better about carving out professional development and professional learning for our parents. This is just for it. I observe a lot of times, and I don't know how it is as you get older, but in the early childhood world we come in and we're going to interact with these children like they're our own children.   02:20:39:00 - 02:21:21:24 Speaker 2 We're educators, and so we're going to set some high expectations because our responsible bility to these children is to help them learn and to gain some of these independent skills. And so maybe, you know, setting up a plan, I always kind of go to the bathroom to toileting because I think that is an area that same. Okay, well, we're going to change the student, but we're going to really work hard on the student just learning if they're able to just start pulling up the pants by themselves or if I'm changing them, going to have them hold their shirt or they're going to hand me a white so that they are starting to gain some independence   02:21:21:24 - 02:21:46:06 Speaker 2 and then teaching that para to do the same. Maybe instead of walking down the hallway, holding the student's hand, maybe walk beside or in front of the student or behind the student, actually behind the student and see if you can pair it with a peer, but that adults support that. I think sometimes we want to jump in and provide how to work with our parents and adults in general to lead them out.   02:21:46:08 - 02:22:30:22 Speaker 2 And I'll get off my soapbox in just one moment. But I also would say, and I tell this to teachers, the time I hear we need more adults, we need more adults. And one thing I've learned, more adults does not equal better support. Sometimes adding more adults to the mix really muddies the water a little bit. And so looking at the supports that are needed and how they can be equally distributed between the adults there in the room and again, look at those peer support and how we can really use those peer support and what modifications can we set up in the environment.   02:22:30:24 - 02:22:49:01 Speaker 2 Erin, you were talking about your son eloping. There was a year I work in issues every single day and we had bells on the door and I carried a walkie talkie around. But Again, it's about modifying the environment so that the environment is prepared for the child.   02:22:49:03 - 02:23:07:10 Speaker 1 We're out of time, but I want to end on one sort of tongue in cheek now and I'll just start back to school. A lot of people, the whole society is always like, Oh, what have parents do to celebrate? The kids are back in school after summer and I always roll my eyes because like we said earlier, it's not a break for us.   02:23:07:10 - 02:23:23:17 Speaker 1 It's really busy and really work. But I have this dream of building time to maybe go have a cup of coffee in a cafe. Dawn and Meg, if you could tell a parent to do something, what would you say to do as a parent to celebrate having a child in school all day?   02:23:23:19 - 02:23:52:00 Speaker 3 Just relax. I mean, really, there's so much work that goes into preparing. And then summers are always intense no matter what. If you're doing s y or you're trying to navigate various camps or you're just trying to provide activities throughout the summer, right? You're exhausted come the beginning of the year, outside of that first day of adjusting while they're in school, you maybe take a couple of days for yourself.   02:23:52:00 - 02:24:02:03 Speaker 3 If you work, take a couple of days off and just do whatever it is that helps feed your soul.   02:24:02:05 - 02:24:28:22 Speaker 2 I think that's wonderful. I was also going to add take pride in what you have accomplished, just getting them to the start of school because it's race, it's a marathon run. And so celebrate that. My advice for new teachers and I would even say this is advice for everybody on this first few days of school, you are successfully able to get your students from point A to point B back and forth a few times safely.   02:24:28:24 - 02:24:29:14 Speaker 2 You did it?   02:24:29:14 - 02:24:30:01 Speaker 3 Yes.   02:24:30:04 - 02:25:01:19 Speaker 2 Yes So celebrate the fact that you got them in the building. Take pride in those. They may seem like small steps, but they're really big steps. So take pride in that accomplishment and celebrate that and celebrate you because you did a lot to get your child there. I think that's important to feel very prideful, to say, look, this, I got them into the building and I got them set and they're going to come home to me this afternoon high five, and be prideful in that.   02:25:01:21 - 02:25:03:09 Speaker 3 Absolutely.   02:25:03:11 - 02:25:16:12 Speaker 1 Yeah. Well, I'm already thinking about when I'm going to have you on to talk more about IEPs and Independence and all sorts of things. So with that note, I want to say thank you and I guess goodbye.   02:25:16:14 - 02:25:18:09 Speaker 3 Thank you for having us, Erin.   02:25:18:11 - 02:25:25:15 Speaker 2 Thank you very much.   02:25:25:17 - 02:25:48:24 Speaker 1 And thank you listeners for joining us. We're just getting started with this podcast and can't wait to bring you more. Please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.      

An estimated 1 in 4 Americans has a disability significant enough that it impacts their daily life.  When the Americans with Disabilities Act was signed into law on July 26th, 1990 it was celebrated as groundbreaking legislation that would grant access to jobs, schools, transportation, and public spaces.  More than 30 years later, the ADA is showing its age.  Advocates argue that while the ADA banned disability-based discrimination, people with disabilities still have to fight to be included. Long-standing policies make it difficult for many people to find meaningful employment, obtain sufficient housing, relocate, and, in some cases, get married.  Rapid advances in technology can be hugely benificial for disabled people. But the lack of best practices and understanding of what accessible means for different disabilities often places the burden of access on individuals.  It's time for a change. This is why we reached out to Matthew Shapiro and Lilith Holmes. Matthew is a public speaker, consultant, and founder of 6 Wheels Consulting. Lilith is a high school student and fierce advocate who plans on going to medical school.  Listen and learn about the challenges they see in their lives and their advocacy work and how we can make meaningful improvements.  The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.          TRANSCRIPT: 01:00:07:19 - 01:00:39:16 Erin Croyle Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, The creator and host of The Odyssey podcast explores the turn our lives take When a loved one has a disability. Even though an estimated one in four Americans has a disability, so many obstacles that interfere with simply existing remain. I learned this immediately after my first child was born with Down's Syndrome in 2010. 01:00:39:18 - 01:01:07:17 Erin Croyle Instead of celebrating this beautiful baby, everyone around us, from doctors to friends to family, was saying sorry. Instead of joy, I felt devastation. I dug out of that pit of despair by first educating myself and later advocating for the human rights that we all deserve. That journey brought me here, working for the Center for Family Involvement at VCU's, Partnership for People with Disabilities. 01:01:07:19 - 01:01:22:09 Erin Croyle This podcast explores the triumphs and the hardships, will revel in how amazing the odyssey of parenting, caregiving and disability is. But we won't shy away from the tough stuff either. 01:01:22:11 - 01:01:53:14 Erin Croyle The Americans with Disabilities Act is indeed both marvelous and deeply flawed. When President George H.W. Bush signed it into law on July 26, 1990, it was groundbreaking. The ADA banned disability based discrimination granting access to jobs, school transportation and public spaces. 30 plus years later, the ADA is showing its age. In fact, some advocates point out that the legislation failed to shift mindsets. 01:01:53:16 - 01:02:19:03 Erin Croyle So while there are laws in place, institutions and individuals have to be reminded to abide by them. And sometimes that can be a fight that folks don't have the time, energy or resources to take on. This is why I had to talk to Matthew Shapiro and Lilith Holmes. Matthew is a consultant and public speaker. Lilith is a high school student who is the epitome of self-determination. 01:02:19:05 - 01:02:27:07 Erin Croyle Both of them were born after the ADA came to be. 01:02:27:09 - 01:02:46:04 Erin Croyle Matthew and Lilith, I'd like to start with you telling us a little bit about yourselves. Given what we're talking about, I think it would help the listeners if you could also explain a bit about your disability for context. At the same time, reminding folks that somebody's disability is nobody's business. Matthew, let's start with you. 01:02:46:06 - 01:03:10:19 Matthew Sure. So I'm very excited to be here for a wonderful conversation on such an important topic. For me, I am in my early thirties and have known the ADA all my life. I was born in 1991, so I have grown up with the ADA. I am a person who is in a wheelchair due to being diagnosed with cerebral palsy. 01:03:10:21 - 01:03:35:07 Matthew Basically that means that the messages don't get from my brain to the rest of my body effectively. And that requires me to use a wheelchair to navigate this world that we all get to inhabit on a day to day basis. And yeah, I think your intro really hit it on the head, right? I think there is a lot of improvement that needs to be done around the area. 01:03:35:07 - 01:04:01:24 Matthew And I, I've often said that we one needed to have another disability rights movement, but to really needed to be intentional about updating it because we are currently in a world where the issues and challenges that were faced in 1990 are still issues and challenges today and 2023. We are not focusing on the next generation of challenges that are affecting the disability community. 01:04:01:24 - 01:04:20:05 Matthew You know, digital access, work from home, shortages in care, attendance like those were issues back then, but they're even more so issues now because we haven't addressed transportation, we haven't addressed employment that were issues when the bill first passed. So there's a lot of ground that I think we still need to cover. 01:04:20:07 - 01:04:54:07 Erin Croyle Absolutely. Before Lilith, we go to you, I want to just point out, Judy Heumann, amazing woman, amazing advocate who passed away recently when she was advocating for the ADA. She was citing Section 504, part of the 1973 Rehabilitation Act. And so her advocacy was actually updating legislation and guidelines that already existed. And so it's interesting to be having this conversation now and you mentioning having another movement because it makes total sense were overdue. 01:04:54:09 - 01:05:01:03 Erin Croyle But we can dive into that more later. Lilith, can you go ahead and tell us a little bit about yourself? 01:05:01:05 - 01:05:19:23 Lilith Hi, I'm Lilith Homes. I was born in 2008 and I have albinism, which causes a loss of pigment in my entire body. That affects my vision because I have nystagmus and I have no pigment in my retinas black light. So I have to use a white cane for accessibility. 01:05:20:00 - 01:05:20:05 Erin Croyle And. 01:05:20:05 - 01:05:43:22 Lilith I read Braille. My school is a public school, but I go to a magnet school for profoundly gifted students. And while that has definitely been an amazing experience, the shortcomings of the ADA are highlighted by some of my teachers' actions. I'm not going to go too deeply into that, but I definitely feel as the world develops, the ADA should develop with it. 01:05:43:24 - 01:06:07:12 Erin Croyle A moment ago I mentioned that disabilities are no one's business, but in order to get those accommodate and we do have to disclose our disabilities. So this is of course, a complicated question. Some disabilities are obvious, others are invisible. But a lot of times we apply for things without ever meeting somebody. You know, you you need to know what to disclose and what not to. 01:06:07:14 - 01:06:13:24 Erin Croyle And it's like walking a tightrope. Matthew, we'll start again with you. How do you manage that? 01:06:14:01 - 01:06:33:20 Matthew I get asked this question a lot, right? And it's always been a situation where I pretty much immediately disclose that I am a person with a disability for a number of reasons. Right. One. Like, let's say I'm doing a job interview, right? That job interview needs to be in a location that is wheelchair accessible. I'm a power wheelchair user. 01:06:33:22 - 01:07:05:20 Matthew I have to be able to access where the interview is taking place. And so it's always in my view that if I'm not telling someone that that is a need, then then I could be walking into a situation where, you know, like the interview is on the second floor and they don't have an elevator. I've also always found that if you disclose, you're sort of getting out in front of it and you're, for lack of a better way of saying it right, you're not making things awkward when you are all doing things. 01:07:05:22 - 01:07:44:20 Matthew I understand how people with invisible disabilities may not feel the need to disclose, but I always tell people as soon as I roll into a room, you see my wheelchair and you know that clearly I have something going on. You might not know what the specifics of it are and you might not know how it affects me, but I think it's really important to help put people at ease in having that conversation right away, you know, where they're not having to guess, they're not having to assume what my accommodations are. 01:07:44:22 - 01:08:07:19 Matthew And you are developing a rapport with either your direct report, if you're working at a job or someone else that is in a position of power to help navigate. All right, Matthew, we've had this conversation. What can we do to help? You know, you have made us aware that, like, these are what your struggles are in the workplace or in any environment. 01:08:07:24 - 01:08:24:09 Matthew What can we do to make that more easy for you? And I think without disclosing that, you know, that conversation can be more tricky. So I've always been very open minded and very direct in my disclosure of my disability. 01:08:24:11 - 01:08:50:16 Erin Croyle Matthew, I want to follow up with that, though, because you have a consulting company and the work you do is very much disability related. And so in your circle of friends, in the people that you consult with, do you see something different though? Do you see people denied interviews if they disclose? Because there are stories of that and reports of that happening? 01:08:50:18 - 01:09:14:05 Matthew Yes, I haven't seen that directly. But you're right that there are stories of that happening. A lot of what I get is how do we handle it Right? And it's a situation of, I would argue, being prepared to handle it both ways. Right. Be prepared for someone to disclose, but don't expect that they would write again. If you're using me as the example, I would disclose. 01:09:14:05 - 01:09:36:21 Matthew I don't know how Lewis feels. I don't know how the next person with disabilities feel, but I think as a as an employer, be prepared for both and be good at handling both so that if someone discloses, you know, how to deal with that and if they don't, you have the system in place to help guarantee that they are successful in that role as well. 01:09:37:01 - 01:09:58:00 Matthew Because I think the opposite of that is true as well. Like if they don't disclose and then they're struggling because they didn't disclose it, you know, does that is that a detriment to them and their ability to be able to do their jobs? Probably there's not a right or wrong answer to that question. And right like it varies person to person. 01:09:58:00 - 01:10:10:15 Matthew And that's that's an argument I would make for disability wide on any number of topics. It really does come down to communication and what the person's personal beliefs are. 01:10:10:17 - 01:10:30:23 Erin Croyle Well, as your situation is different, I mean, you're in high school, but I'm sure you face a whole sort of different dynamic. You're also looking ahead to the future. I mean, you're I assume college applications and all sorts of things. I would love to hear how different your experience is. 01:10:31:00 - 01:11:00:16 Lilith Well, my parents haven't yet kicked me out of the house and said, get a job. So I haven't yet had the job interview, but I have had to do interviews. When I applied for specialty centers and I had to tell them that I had a disability not because they needed to do anything special for me just for the interview, but because if I were to go to that school, they would need to have a system in place to help manage my accommodations. 01:11:00:18 - 01:11:24:16 Lilith But it seems just like everywhere in public, people want you to disclose your disability. They ask you more questions than a doctor would most of the time. So I think it is up to the individual. But disclosure of your disability is important to those who need to know. But if the random strangers walks up in public and goes, what's wrong with you? 01:11:24:17 - 01:11:35:00 Lilith Because they see me with my cane, Matthew with his wheelchair and they would just march up and go, What's wrong with you? Do you need help? I think that's not appropriate. 01:11:35:02 - 01:11:45:01 Erin Croyle Yeah. And that level of discrimination just exists in this weird vacuum where people are completely clueless. 01:11:45:03 - 01:12:07:21 Matthew Can I. Can I piggyback on that? To work with what Little said. I agree with what she said. Right. In terms of when people randomly come up to you and say, hey, what's wrong with you? What's your disability? I can make an argument for the opposite of that too, though, because I've always viewed that. And again, there's no right or wrong answer in this situation. 01:12:07:23 - 01:12:31:19 Matthew I've always viewed that as an opportunity to educate and to expose people to disability, particularly younger youngsters. And I've frame that. I've always framed that as like my grocery store story, right? Where a little kid will see me in the grocery store and you get to look all the time, right? They'll see me with my wheelchair and their eyes will get as big as saucers, right? 01:12:31:19 - 01:12:56:09 Matthew Because they're so surprised by this device that I'm using to navigate the world. Oftentimes, if I'm in a space where I notice that they're doing that and I'm in a space where they can be safe with it, I will let them engage with my wheelchair, right? I'll let them drive my chair a little bit. I'll let them push the buttons on the chair that are the lights and the horn and stuff. 01:12:56:11 - 01:13:22:11 Matthew But nine times out of ten, the parents will come up and snatch the child away before that interaction can really take hold. And I think that does a couple of things, right? It it reestablishes like stranger danger, which I understand. I'm not I'm not advocating for people to speak to strangers, but I'm open. I'm open, I'm honest, I'm very approachable. 01:13:22:13 - 01:13:41:11 Matthew And then it also reignites the stigma around disability. I'm like, Oh, that kid. The next time they see some disability, they're gonna be like, Well, I went and tried to talk to Matthew, right? And when I did, my parents got mad at me. So I'm not going to try and engage with that next person that I see. And I don't think that's the right strategy either. 01:13:41:11 - 01:13:54:13 Matthew Right? Because we need to be teaching inclusion. We need to be teaching that all people are valued. If we're doing that, we're setting up young people for misinformation, I guess is the right way to describe it. 01:13:54:15 - 01:14:22:23 Erin Croyle That is such an important point and it's nice to hear that you still have the patience and tolerance for that. I think it is easier with children and I think too, it's different with intellectual disabilities and disabilities where communication is difficult, it scares people. I find it really strange with my son having Down's syndrome, you know, when he was little it was cute and people looked at him with adoring eyes. 01:14:22:23 - 01:14:36:08 Erin Croyle But he's, you know, almost 13. And as he gets older, it's it's a lot of stares, which actually to me because it's quite a common disability and people stare and they're not kind stares. 01:14:36:10 - 01:14:57:09 Matthew Yeah and honestly that will get worse before it gets better right? I ran into that same situation when I got like when I was younger, I was the cute kid in the wheelchair and everyone wanted to push me around and and all those things. But then when I got into like middle school and older, like, I wasn't frankly, I wasn't necessarily invited to parties. 01:14:57:09 - 01:15:27:09 Matthew And so I had to create my own social circles and my house became the hangout spot. But now as an adult or I try to act like an adult on a regular basis, I still feel like I'm a kid at heart as an adult, right? Like, I have the tools and the skills and the, you know, my parents let my friends drive my van on a regular basis, so I go out with them whenever I want and I have ramps to get into people's houses so I can, you know, go hang out at different places. 01:15:27:11 - 01:15:31:16 Matthew But it changes. I think people need to be aware of that. 01:15:31:18 - 01:15:59:01 Erin Croyle I love that you said this because I want to talk about, like what perceptions of disability and accessibility are because it's one of those factors of an inclusive community that people don't really understand. I think unless you are part of the disability community, when you hear accessible, you think maybe wheelchair accessible and maybe Braille, but it's so much more than that. 01:15:59:03 - 01:16:16:05 Erin Croyle It's screen readers, it's using camel case. When you do hashtags for those that don't know, it's capitalizing the first letter of a word. So a screen reader will read it as a separate word and the hashtags are not legible. The screen reader without that. 01:16:16:07 - 01:16:19:08 Matthew See, I didn't know that. See, like I just learned something. 01:16:19:10 - 01:16:45:11 Erin Croyle Right? And well, so there are best practices and standards that we are not practicing best practices as a society. I often think, how can we change that, you know, as we wait? I don't I don't feel like there's a movement to update the ADA. What would you want to tell the world about accessibility and what it means to different people? 01:16:45:11 - 01:16:51:01 Erin Croyle And Lilith, since Matthew and I have been dominating, I would really love to hear from you first. 01:16:51:03 - 01:17:19:21 Lilith Oh, of course, I. I feel like a lot of people think accessibility detracts from something like putting your Facebook post in legible font importing image description somewhere in. It makes your posts meaningless. But I want people to understand that accessibility doesn't just benefit the person who needs it. It can also sometimes benefit people who don't necessarily need it, like some people I've heard of. 01:17:19:21 - 01:17:42:12 Lilith They use closed captions when watching TV, even though they are not deaf. It just helps them focus more. And I'm not saying that people without disability should go gung ho and taking up all the resources, like just standing in the wheelchair ramp like some people at my school do. But I just want people to understand that accessibility is important for everyone. 01:17:42:18 - 01:17:52:12 Lilith It is not just something we have to do to make the disabled person be quiet because that's just not very nice. And yet a lot of people say that. 01:17:52:14 - 01:17:54:04 Matthew Well said. 01:17:54:06 - 01:18:06:14 Erin Croyle Exactly what else do you experience at school, Ellis? I mean, what sort of things are you asking for that come across as as like a burden, if you will? 01:18:06:16 - 01:18:26:05 Lilith I wouldn't like to throw my school under the bus too much, but a lot of some of my teachers have been treating my IEP as optional or complaining about it or acting like it takes away from the whole class. If they write in a legible font and make their mouth bigger than an end on the screen. I mean, when they're presenting it. 01:18:26:07 - 01:18:40:10 Erin Croyle You know, it's funny, as is aware, as I like to consider myself, I didn't even think of font size. That is such a simple thing to adjust. And you find folks not wanting to do that. 01:18:40:12 - 01:18:46:06 Lilith Yes, many folks think that it's just too much effort. 01:18:46:08 - 01:19:11:11 Erin Croyle It's interesting, when I was researching ahead of this interview, you know, just thinking outside the box about accessibility, modifying door handles for someone whose arms, you know, maybe you don't have hands. I know in my own personal experience with a child who eloped, having access to fenced in playgrounds that had gates that were childproof was a lifesaver. And it's hard to come by those. 01:19:11:13 - 01:19:37:08 Erin Croyle I find that I run into roadblocks because people find fencing to be almost related to jail, but that's keeping kids alive. How can we find a middle ground on what is aesthetically pleasing and what is a safety issue? It's actually hurtful to see how little people want to change. Matthew. I mean, being someone using a wheelchair, you must see it all. 01:19:37:10 - 01:20:09:19 Matthew It is quite an adventure to navigate the world from a seated and six wheeled situation. People think that the bare minimum of accessibility, meaning ADA, compliance and different things like that is all that we need to be doing when in truth and in reality. In my work, I always challenge people to say, Let's go above and beyond what's required by the ACA to make the space as most accessible and inclusive as possible. 01:20:09:21 - 01:20:40:16 Matthew What does that look like? Well, that could be open floor planning, right? Where there's not. You're not in a space that is cluttered by desks or extra staff around the place, like extra boxes and extra cabinets and extra, you know, whatevers that take up additional space for from an accessibility standpoint, whether you're a wheelchair user, whether you're like Luis and how it cane, whether you're somebody who uses a walker, all of those things matter. 01:20:40:18 - 01:21:03:18 Matthew And one thing that often blows people's minds and I was talking about this on a panel I was on recently, carpeting is super important. If we have a carpet that has like a design in it, if you're navigating that space as a wheelchair user, that design is going to pull you in a certain direction because of how the thread on the carpet is. 01:21:03:20 - 01:21:27:04 Matthew And so when I'm working with my architect clients and my builder clients, I'm saying like get rug that doesn't have design in it because it's going to make it easier thinking about layouts of of office spaces, right? Thinking about instead of having, you know, if you have a bunch of desks, make them all standing desks so that that is immediately accessible to everyone, right? 01:21:27:04 - 01:21:45:04 Matthew I can go up to my desk and I can push a button and that raises my desk up. You know, I'm coming to you from my office right now. And over Christmas, my my parents bought me a standing desk for accessibility purposes so that I could in programing I could raise my desk up in trying to navigate under my desk. 01:21:45:04 - 01:22:01:24 Matthew I can raise my desk up. I now love this desk, and it makes me so much more productive. You know, we've got to think about sidewalks and spaces to get to and from spaces, you know, are that are the stones coming up through the sidewalk? Are they compliant? Are there curb cuts compliant? You know, all of those things. 01:22:02:01 - 01:22:23:04 Matthew So my brain is constantly evaluating and looking for the right path and looking for the right way to go about things. I would love a day when, you know, I could go somewhere and not have to worry about that. I think we're a long way from that, but that is definitely a goal that I would like to see achieved. 01:22:23:06 - 01:22:51:13 Erin Croyle As someone who's 45, I remember in 1990 the buzz around ADA, but I was quite young then. Still to not fully understand how amazing it was. And you know, people with disabilities were segregated quite a bit still. So I didn't know anyone who could share with me the impact of it. But I remember very well the conversations around businesses not wanting to comply and being angry and complaining about costs. 01:22:51:15 - 01:23:19:17 Erin Croyle And to some extent I get that because small businesses can't afford to change everything. But at the same time, here we are, 33 years later and I see new constructions, I see remodeling and a complete failure to try to use universal design for living. I don't understand why we can't do ramps. I don't understand why any public bathroom does not have an adult changing table. 01:23:19:17 - 01:23:27:09 Erin Croyle You know, I don't understand why showers cannot be fully accessible. It it is heartbreaking. 01:23:27:11 - 01:23:51:02 Matthew There's an element to where I think the most exhausting thing for me and I'd be curious to know your thoughts with your son and know if I would like to know this from YouTube. But the amount of planning that is required to make sure that like, okay, we're going to go to this restaurant or there's very little that can be done spontaneously as a person with a disability because we want to go to this restaurant. 01:23:51:02 - 01:24:13:23 Matthew Well, Darren, there's a step to get in there. Well, how do we do that? Do they have a ramp? Oh, we'll carry you in. No, you won't. Right. Like there's all these things that occur or, you know, we want to go stay at this resort. Well, you only have one room with a rolling shower and somebody is using it and they don't have beds that are for limited beds for somebody like myself who uses a royal lift. 01:24:13:23 - 01:24:29:01 Matthew And for those that don't know what a horror lift is, it's a piece of equipment that can be rolled under the bed that will help you transfer from your wheelchair to the bed. And in order to do that, you have to be able to roll it underneath the bed. But nine times out of ten now we have platform beds. 01:24:29:03 - 01:24:51:21 Matthew Those are just a couple examples. There is a laundry list of things that you have to concern yourself with before you even try to do something on a day to day basis. So yes, it's part of life. But again, I would love a scenario where that would not be required. But as of right now, because of the way the world is set up, it is still required. 01:24:51:21 - 01:25:00:02 Matthew And that's what motivates me to try to change the way we have these conversations in the work that I do. 01:25:00:04 - 01:25:04:12 Erin Croyle Before I say anything little, if I'm curious what you have to say. 01:25:04:14 - 01:25:28:23 Lilith Sorry. Yeah, I agree with that. I feel like it's difficult not being able to just get up and go somewhere and enjoy it without wondering, okay, who is going to fall and break their nose on the steps and on the bathroom signs actually properly labeled because I think I mentioned this on a panel. The bathroom sign at Barnes and Noble and Braille. 01:25:28:23 - 01:25:52:12 Lilith It was upside down. And so pointing that if you put your finger on it, you'd stop yourself. So, yes, I feel like it's difficult with the lack of universal design to be able to do anything without a lot of careful planning and agonizing over Is it worth the risk? Should we complain to them? Stuff like that. 01:25:52:14 - 01:26:12:00 Erin Croyle But I want to ask you to to tell us a little more, because I think, you know, we know a lot of things that happen with wheelchairs, but I don't think there's a great understanding of folks who are visually impaired because I think there's a perception that you have a cane or a guide and that's it. You're fine. 01:26:12:02 - 01:26:16:18 Erin Croyle So can you tell us a little more about some of the daily obstacles you face? 01:26:16:20 - 01:26:46:21 Lilith It's hard when the crosswalk is not very visible crossing the road, but when I go outside, I cannot see anything at all because I have no pigment in my eyes to block the sun. So I just can't see anything at home. So it's very hard crossing the road when you have this guy in the car waving and waving and waving and waving and waiting for you to go because you think he thinks you can see his hand or when the sidewalk is bent up and cracked, because that's hard for me to navigate with my cane. 01:26:46:23 - 01:26:54:14 Lilith I think it's hard for most people to those with disabilities and without to manage that anyway. But it's very hard to see. 01:26:54:16 - 01:27:15:20 Erin Croyle It's interesting to me too. I find a lot of the hurdles are our fellow humans; people leaving bikes in the curb-cut outs or things on sidewalks, or just standing there and not being aware of those around them, just in their own little bubble of reality. And it's not a universal reality. 01:27:15:22 - 01:27:37:06 Matthew Well, and I think that's so interesting, right? I have a couple of thoughts on what Lewis said. First of all, the fact that Barnes and Noble has the Braille sign upside down, like that's a problem. Like somebody didn't install that properly. So like, what are we doing to fix that? I can't tell you how many times I'm on the sidewalk, right. 01:27:37:08 - 01:27:55:22 Matthew And somebody is walking towards me and they're doing the universal. I'm on a sidewalk from my head down and I'm going to be looking at my phone situation. I stay on my path. I do not move because it is not my job to move for you. You need to look up and you need to realize, Oh, I'm about to run into somebody in a wheelchair. 01:27:55:24 - 01:28:16:23 Matthew And a lot of times when that happens, to your point, hearing like people not being aware of what's going on around them, they'll hit me and look at me like it was my fault. When you got your head down in your phone and you're not paying attention to where you're walking. That happens to me more than I would like to admit. 01:28:16:23 - 01:28:23:20 Matthew It is a frequent occurrence when I'm in big cities like New York, DC, places like that. 01:28:23:22 - 01:28:50:11 Erin Croyle Yeah, you see that everywhere. It's a lack of empathy and a lack of knowledge. And quite frankly, ignorance. I think as a society we still look at disability as this thing that will never happen to me. But one in four Americans. That means pretty much either you or someone you love will have a disability that impacts your daily life before you die. 01:28:50:13 - 01:29:14:11 Erin Croyle And I talk about this when I speak to university students about inclusion. I feel like my dad is a really good example and I'm a good example of that. I didn't know anyone really with a disability until my son was born. He was the first person I met with Down syndrome. Because of that. I think part of the devastation I felt when he was born was just not knowing anyone because we just pretend it doesn't happen. 01:29:14:13 - 01:29:40:15 Erin Croyle And then my father had a stroke and he had to use a wheelchair and it was devastating for him. And my mother, who's a nurse, but old school used the word invalid, you know, to describe him, which to me is one of the most hurtful, awful words you can use to describe a human being to to say invalid, which is essentially invalid. 01:29:40:17 - 01:30:03:13 Lilith What I mean about a lot of people, they they don't know they're doing it well, or maybe they do, but they say a rude word like retarded, invalid, stuff like that. And I'm not sure how many of them know that they're saying something. They really should not say someone with a disability. But that's just it's very hurtful even when they don't mean it. 01:30:03:15 - 01:30:13:18 Matthew So and it's interesting that you say that. Well, is right when I run into a lot of times, as I'm glad you're out today. Right. I'm glad you're here. 01:30:13:20 - 01:30:15:05 Erin Croyle Oh, my God. 01:30:15:07 - 01:30:18:22 Matthew Oh, I get it. I get it regularly and my such. 01:30:18:22 - 01:30:20:22 Lilith Oh, I'm sorry. I didn't mean to interrupt you. 01:30:20:23 - 01:30:23:13 Matthew No, no, go ahead. Well, the such an inspiration. 01:30:23:13 - 01:30:26:09 Lilith You're so brave. You got up this morning and came to work. 01:30:26:13 - 01:30:45:13 Matthew Yep. Yeah, It's that or it's. I'm glad you're out today, right? And my friends have gotten to the point where they'll make jokes with me, like, Oh, I'm glad you're out to do that, but they'll, like, Come pick me up. Right, and do all the things like the language we use is so important. I am not to love your point. 01:30:45:13 - 01:31:13:03 Matthew I'm not an inspiration because I wake up every day and I put my pants on my messages might be inspirational. My way of doing my work might be inspirational, but just because I live my life doesn't make me a godlike figure because I'm quote unquote, overcoming my disability. I'm not overcoming my disability. Right. I'm living with it. I am living to love it. 01:31:13:03 - 01:31:44:08 Matthew I am living to navigate life with it. I have the same wants, desires and needs as everyone. At 32, I'm actively in the dating scene and let me tell you, it's an adventure and it's it's hard to deal with all of that as a person who uses a wheelchair, frankly, because society doesn't look at you in a romantic sense, which is hard. 01:31:44:10 - 01:32:14:09 Matthew So I'm dealing with the same things people my own age are navigating as nondisabled folks. But there are elements that make it harder because you're having to break through societal misunderstandings more than anyone else. Sorry, I went on a soapbox for a second, but it's it's very, very hard and is very, very frustrating that you have to jump over five hurdles before you get what you want. 01:32:14:11 - 01:32:32:14 Erin Croyle I have to ask you a question which is totally off topic, and then we'll jump back. And maybe this is a topic for another episode, but someone recently asked me, you know, they have dating apps for almost every niche anywhere. I mean, do they have specific dating dating apps? 01:32:32:16 - 01:33:03:04 Matthew They do. However, and this is not a not a lot of those people are older. A lot of those people are into weird fetish things. And so for I'm a younger person, I am 32, right? I'm not trying to date again, like not a knock. I'm not trying to date someone 52. And so, yes, there are, but the pool is not as vast, if that makes any sense. 01:33:03:06 - 01:33:17:16 Erin Croyle It makes total sense. And I don't see any reason why you wouldn't want to date someone without a disability. It doesn't make sense to have a separate app, but yeah, but that's to me, that's cutting down on the dating pool for you. 01:33:17:18 - 01:33:21:18 Matthew I honestly would go ahead with this and then I'll. I'll add again. 01:33:21:24 - 01:33:58:00 Lilith I'm sorry, it's very hard because I am not look any way looking for a life right now but when I get to that phase, if I am going into an area where people are more likely to fall in love with each other, I would not like if someone were to walk up with me, I would. To me, I would prefer them to say, If you want to go on a date rather than, Oh, you're so inspirational because it's ability, as sad as it is, that people don't see people with disabilities in a romantic way, they see them as inspirations or less nice things. 01:33:58:02 - 01:34:22:21 Matthew As somebody that is navigating that now, you're right. And Erin, I'm I'm on traditional dating apps like I'm on the bumble's of the world. I was on eHarmony for a while. I was on match for a while. And there are hurdles not to be completely got off topic of the conversation, but there are hurdles that are really, really hard to get through. 01:34:22:23 - 01:34:51:20 Matthew And here's the other thing. And I've said this to my therapist. I've said this to my parents. I've said this to a lot of people. I feel like my like I'm doing things now in the dating world that you would typically probably do in your early twenties. And so I have felt stunted by all of that because people when I was growing up again, I was like the best friend. 01:34:51:20 - 01:35:14:07 Matthew And you know, for a lot of people it's still the case because I am a genuinely gay. People don't often view me in a romantic sense. But what people don't know, it's like I'm going to treat you how you're supposed to be treated, right? And I'm going to be the best partner out there. But then the other element to that is there's more that comes with the relationship with me than than a traditional relationship. 01:35:14:07 - 01:35:31:05 Matthew So I don't want to get us too far down the rabbit hole. But yeah, it's a fun it's a fun thing to explore. And by fun, I mean, that's fun, but not fun. I mean, argh! But we're, we're doing what we can. 01:35:31:07 - 01:36:14:16 Erin Croyle Well, I love a good Segway, and actually, I think is the perfect Segway because you mention hurdles and I'm thinking about how we view disability in this society and how it impacts people in lack of understanding impacts everything from dating to universal design to how we build structures. A lot of times when I have to work with my son and help my son get access to the things he wants to do, his level of accessibility is more about changing mindsets because when you have an intellectual disability, everything's hard from communication to acceptance to just doing things. 01:36:14:16 - 01:36:41:16 Erin Croyle And we've had situations where, for example, I wanted my son to be on the local swim team. He loves swimming. He is not going to swim like the other kids. And I had to jump through hoops even in this city that considers itself inclusive, but not really jumping through hoops with people who consider themselves inclusive and who are amazing people. 01:36:41:18 - 01:36:54:13 Erin Croyle It was hard and it was a lot of work on my part and he's on the team and it's great. But the process of getting them there was not it was not accessible. 01:36:54:15 - 01:37:02:08 Matthew How is it now that he's on the team like what's that like? But granted, there were challenges getting him on the team. But what's it like now that he's on the team? 01:37:02:10 - 01:37:21:23 Erin Croyle Well, the irony, Matthew, is it's a noncompetitive swim team. So the fact that it was hard to get him on the team is ridiculous. We found a great person to help him. That was part of allowing him on the team, was having a support person in the pool with him and he's doing okay. He's a good swimmer. Maybe he doesn't get the exact stroke he should be doing at that time. 01:37:21:23 - 01:37:29:23 Erin Croyle Right. But he's an athlete. It's just he doesn't, the competition part isn't something he cares about, but I think that will come. 01:37:30:00 - 01:37:33:04 Matthew Yeah, well, and it sounds like he just likes being in the water. 01:37:33:06 - 01:38:06:23 Erin Croyle Water? Yeah. Waters is his happy place. Yeah. So when I think about that story and I share that story, I share it because everywhere I see roadblocks, it's due to ignorance from the schools to our buildings to our mindsets. And I say this again when I talk about inclusive schooling, I do not understand how we are not teaching about disability more in schools, both in our public schools, where we go every day, but also higher education. 01:38:07:04 - 01:38:34:23 Erin Croyle Because when we're talking about accessibility in school, when we're talking about universal design, maybe if our architects and engineers understood things like ramps and how showers should be designed and platforms that are needed for beds, maybe then that could be best standard practices. And the other thing that I find is because our mindset mindsets have not shifted. People don't think they'll ever become disabled. 01:38:34:23 - 01:38:54:13 Erin Croyle And so they're putting in steps and multiple floors and spiral staircases. And there's just this lack of understanding about how we could create things that are accessible and beautiful and everyone can enjoy them. And it means that you can enjoy it for a lifetime no matter what happens to you. 01:38:54:15 - 01:38:56:17 Matthew Well, do you want to go first? 01:38:56:19 - 01:38:58:04 Lilith I'm sorry, I didn't hear. 01:38:58:07 - 01:39:39:09 Erin Croyle There's not really a question there I love. I'm curious, in your experience, if I could turn this into a question, if you think things would change, if we would introduce disability history, but also the needs for accessibility and modifications both in our public schools, grade schools, secondary, but especially in higher education. So for example, if every teacher, even if you're not planning to be a special ed teacher, but every teacher took special ed classes to understand idea, to understand how powerful and important teaching is, to understand different disabilities, and how adapting a classroom can help all students. 01:39:39:12 - 01:39:50:18 Erin Croyle If architects could do these things, what impact do you think that could have? Lilith And what would you want to see change to help impact that universal change? 01:39:50:20 - 01:40:22:19 Lilith I think that educating people on disability access would be very important because there are several ramps that I've seen so far that make Mt. Everest look accessible. Educating people because it isn't just wheelchair ramps, it's everything educating people about disability and how to make things accessible, which is very important. People should understand these things because most people have never even heard or had never even met someone with a disability. 01:40:23:00 - 01:40:43:06 Lilith And they are very confident, I'm never going to be disabled, I'm fine. And then they wake up one morning and they're disabled and then they're just they don't know what to do with themselves. So I feel like teaching people about disabilities and accessibility wouldn't just benefit people in the disability community, it would benefit everyone. 01:40:43:08 - 01:41:04:00 Erin Croyle And Lilith, how do you think if we had already started that, if this had been something that had been a part of the ADA that we would introduce learning about disability in our education systems to change mindsets, how different do you think your life could be if that had been something that had happened? 01:41:04:02 - 01:41:19:15 Lilith I think it would be different. I think that it would be easier for me because people would understand my needs and other people's needs. It wouldn't be a big deal. It would just be a natural part of life. 01:41:19:17 - 01:41:30:08 Erin Croyle What kind of things have you had to teach people just so you could access school or extracurriculars? How much educating do you do in your circles? 01:41:30:10 - 01:41:42:16 Lilith I have to educate a lot of my teachers on exactly how to accommodate me, and I probably shouldn't have to do this. But why they should accommodate me. 01:41:42:18 - 01:42:16:10 Matthew And Erin, I have I have so many thoughts on the last five or ten minute conversation we've been having about should we be teaching accessibility, Should we should it be part of our education system, all that stuff? The short answer is yes, I have never understood why in any conversation, disability is not in the same mold as people of color. 01:42:16:12 - 01:42:54:13 Matthew People on the LGBTQ spectrum. Why it is not more forefront in our education. And yes, I think everyone, every teacher to be should be learning about idea, should be learning about the ADA. You should be having this knowledge base because to not understand disability as a teacher is frankly I think, unacceptable. Right? Because at any point you could be teaching somebody with a disability and you don't know it. 01:42:54:15 - 01:43:14:20 Matthew What I have loved is that it would have been a primary thing that came out of the 88. Yes, But also what we're talking about right here is the crux of my work. I am trying to do that education. I am trying to make architects more aware of accessibility, so much so that I'm on to architect projects right now. 01:43:14:22 - 01:43:37:11 Matthew I'm trying to have conversations with builders to say, hey, build more universally design things that, yes, it could be used as an ADR apartment, but it could also be used as a traditional apartment. Build it in the structure of what you already have. Yeah, I think there's a lot of work and a lot of conversation that could be had about Lilith and I. 01:43:37:11 - 01:43:58:16 Matthew To be part of those conversations. Bring us in. Like, I would love to know more of Louis perspective as somebody who's blind and visually impaired, I can only imagine now, like I know what navigating the world is like for me. And I have all my senses. I can imagine being blind and visually impaired. Now granted, you would figure it out just like anything else. 01:43:58:16 - 01:44:09:01 Matthew But we all have different ways of going things. But I think the more people knew about those things, the better off we would be. 01:44:09:03 - 01:44:37:11 Erin Croyle You know, we're talking about education and a lot of what folks do talk about right now is DTI, diversity, equity and inclusion. But in my experience, unless an organization is disability focused, DTI is for everyone but disabled people. We're still outliers. The White House issued an executive order in 2021, changing it to diversity equity, inclusion and accessibility. But that really hasn't gone mainstream. 01:44:37:11 - 01:44:50:13 Erin Croyle It's only federal guidelines and I never hear anyone talking about it. So I'm curious for both of you what your experience has been with DTI practices. 01:44:50:15 - 01:45:18:11 Matthew DTI is another one of my hot topics and things that I work on regularly. I do a ton of programing about DTI and bringing people with disabilities into the workplace. And one of the things I always say about the is we need to make sure disability is part of that conversation. Oftentimes I am in the back of the space and disability is not brought up and I'm like, How much more diverse of a population do you want? 01:45:18:17 - 01:45:40:23 Matthew Our population crosses all other populations. You can be a person of color. You can be a person of color who is also gay. You can be a person of color who is also gay, who is also atheist, right? I'm just making stuff up. It all came across. DEI is so important and disability needs to be a regular part of that conversation. 01:45:41:03 - 01:46:00:21 Matthew I do that on a lot of panels. I do that with a lot of groups I work with. You know, how are we developing the strategies and when we're developing the strategies, if we have a DEA statement, does that include disability in the language? If we're coming up with a guide plan, like what are we doing for disability programing to make sure that's part of it? 01:46:00:23 - 01:46:05:09 Matthew I have a lot of thoughts on the idea, but I'm curious to see what Luis has to say. 01:46:05:11 - 01:46:30:15 Lilith I feel like it's hard to talk about inclusion without talking about disability, and yet everyone acts like disability is a bad word. I feel like the fact that the White House added accessibility to that is good, but people still aren't taking it seriously yet. Disability should have been a part of it from the beginning because disability is not like this really rare thing. 01:46:30:17 - 01:46:42:16 Lilith It is very common and it's important that people with disabilities are treated the same way as everyone else or in the correct way that they need. 01:46:42:18 - 01:47:08:05 Erin Croyle One of my favorite things to talk about when we talk about the ADA is the pandemic. And let me say, I don't really like talking about the pandemic. It was traumatic. It still is. It's still hurting people. But I guess one of the few things positive that came out of it is that we were able to see accommodations for people with disabilities that they've been asking for for years, happened virtually overnight. 01:47:08:07 - 01:47:39:21 Erin Croyle Virtual meetings, telehealth, virtual IEP meetings, the ability to participate in local government remotely. It was just amazing. And at the time the realist in me was like, Oh, this is fleeting. But there was hope that maybe it wouldn't be. But we're seeing now telehealth with the end of the public health emergency is going to slowly be phased out and we're going back to this ill informed idea of normal. 01:47:39:23 - 01:47:53:07 Erin Croyle And so I'm curious for you to what changes would you like to see be made permanent and what other changes in general would you like to see that you think that we can do after seeing what we were able to do so quickly? 01:47:53:09 - 01:48:13:24 Lilith I felt like telehealth was a really good step because prior to the pandemic, any time that US three needed to go to the doctor, we had to drive sometimes an hour to the office, then sit in the waiting room, and then basically be sat on by our parents and stop us from looking them off the chair in the sick section. 01:48:14:01 - 01:48:33:21 Lilith After telehealth, we could just get in front of our computer and be a few minutes later we would be talking to our doctor and then we would not have to worry about who was going to climb on top of the table. So I really think telehealth should be made permanent because while some appointments do require you to be face to face for testing, a lot of appointments don't. 01:48:33:21 - 01:49:05:18 Lilith So it's very good that you can do a doctor's appointment in the comfort your own home without getting every germ from the hospital and bringing it with you. I also feel like masking was a good thing because while it's really difficult to wear a mask for 8 hours straight at school, the amount of sickness, COVID and just any other illness in general that decreased our family, you didn't really get sick at all in 2020 when prior to masking one person a week was bringing home some really nasty germs. 01:49:05:23 - 01:49:10:18 Lilith So I think more people should embrace masking and telehealth should be made permanent. 01:49:10:20 - 01:49:12:12 Erin Croyle Matthew, what about you? 01:49:12:14 - 01:49:37:00 Matthew I will say that the time during the pandemic was the most productive I think I've ever been, because I would attend 3 to 4 meetings on a regular basis and I wouldn't have to travel. I could get so much more done because I was not having to go from point A to point B to point C to attend meetings or to do something in person. 01:49:37:02 - 01:50:06:16 Matthew We can't go backwards. We can't go back to what we were before the pandemic because it has made life so much more easy for people with disabilities, so much so that in the coming weeks I'm attending the National AIDS Symposium virtually to re-up my credits for being a coordinator. I could have gone in-person, yes, but it is actually so much more productive, so much more accessible to be able to do it from my home office, all my computer. 01:50:06:18 - 01:50:39:22 Matthew I can do the session and then go to my kitchen and grab a glass of water or eat some lunch or work on else while I'm waiting in between sessions. I think that every event, everything that we're doing in business, in school, there should always be a virtual component. I know that people dislike getting on Zoom meetings, but there are times when I can't get to a physical space, be it because I don't have a ride it because I'm not feeling well and it's just easier for me to jump on the zoom. 01:50:39:24 - 01:51:01:06 Matthew That has to remain and I will be very disappointed if we go back to the norm. And frankly, I don't think we are. I think in some spaces we are, but I think people have seen the value in people working from home. There happier right there, there being better productive work done, more quality work done. Yeah, I hope it's not. 01:51:01:08 - 01:51:08:11 Matthew You must come in from 9 to 5 and you must do X, Y, z because that's not a productive way of thinking about things. 01:51:08:13 - 01:51:28:06 Erin Croyle You know, it's funny when you discuss productivity about working from home. I find working from home, if no one's home, there are less distractions than an office. No one's dropping by to chat. No one's interrupting. No one saying, Let's go to lunch. You can get a lot more done in a short amount of time because there's no chatter. 01:51:28:08 - 01:51:51:06 Erin Croyle No, I feel like I need to add as a parent and caregiver when we're talking about some of the adaptive tions with the pandemic that have changed for the positive, for me to have a child who has a lot of needs at school. I have IEP meetings every month with his team. He sees, I think, eight different specialists. 01:51:51:06 - 01:52:14:19 Erin Croyle Some of them are 6 hours away. So to be able to have telehealth and virtual IEP meetings was a complete game changer. I got hours back from my day because no one wants to stay in chat on a Zoom call. They're like Sia and they hang up. And so even if a school is 10 minutes away, you cut out that that extra. 01:52:14:19 - 01:52:39:10 Erin Croyle And then you think about families who don't have transportation, who it's hard to make it to IEP meetings. This gives them a chance to actually participate. This opens up participation for people who have not been able to, because of their socioeconomic status, their employment status, their transportation status. It is a game changer and we need to keep looking at how we can evolve those practices, I think. 01:52:39:12 - 01:52:40:14 Matthew No, I agree. 01:52:40:16 - 01:52:52:20 Erin Croyle I have to ask you, Matthew, we're talking about the ADA and you just mentioned being an 88 coordinator. So can you tell us more about that? And it sounds like you got the inside scoop there. So why haven't you made changes? 01:52:52:22 - 01:53:12:21 Matthew Well, I wish I had that. I wish I had that power and authority because I would. There is a certification you can get that says you are an 88 coordinator. So I took a bunch of courses and learned as much as I could about the ADA. Am I an expert? No. But I have my notes everywhere from from the courses that I took. 01:53:12:21 - 01:53:38:09 Matthew So I have resources available to go back and look. And I really did that for my work. When I'm doing assessments or any of my other work, I'm thinking about things above and beyond the ACA compliance, right? What can we do to make this space more fully inclusive and accessible? So, you know, I have that mindset going in, but now I also have the knowledge of what the ADA requires so I can look at it from both perspectives and I can give the best product to my clients. 01:53:38:09 - 01:53:55:21 Matthew That is possible because I have that common sense approach. And then I also have what the ADA says. It was really a knowledge learning thing for me. I've had it for about two or three years now. I need to kind of go back and again, that's why I'm taking the courses next week, kind of re up my credits. 01:53:55:21 - 01:54:01:15 Matthew Yeah, it just gives me a wider breadth of knowledge that I can provide to my clients. 01:54:01:17 - 01:54:08:09 Erin Croyle So give us something then. Lois and I are here. What's something about the ADA? Do you think, that maybe we don't know. 01:54:08:11 - 01:54:36:00 Matthew Everything turned out not to be. I know if I have, like, a specific thing. Let me. Let me. Let me give you an example of what I would like to see. Mm hmm. So two things. One, airplanes aren't necessarily covered by the ADA, so the airline industry has their own legislation for that which they're working on that I know I've seen stuff lately on LinkedIn and stuff where they're trying to figure out ways to get wheelchairs on planes so people don't have to leave their chairs. 01:54:36:05 - 01:55:01:06 Matthew But one of the things I would love to see within the ADA, rather than strict doors, have to be 32 inches or, you know, light switches have to be X, Y inches, make it ranges to say that if a light switch is between here and here, you're compliant because like, let's say I wanted a light switch at a lower register because I'm a seated person and I like light switches at a lower spot. 01:55:01:06 - 01:55:22:04 Matthew So I don't have to strain to turn them on and off. Or let's say I wanted wider doorways in my house to allow for me to freely navigate as a wheelchair user. So if we developed ranges rather than mandating like it has to be 32 inches, I think that that would help with universal design, that would help with more inclusive accessibility. 01:55:22:09 - 01:55:30:00 Matthew That's something I brought up to a lot of different folks. There's not been any kind of movement on it, but that's definitely something I would be open to seeing for sure. 01:55:30:02 - 01:55:35:05 Erin Croyle Is there something in the ADA that's interesting for non wheelchair users? 01:55:35:07 - 01:55:59:20 Lilith The fact that Braille is required to be on all bathrooms is great, but either there is no regulation about how the quality of the Braille should be or people just don't listen to it. Because like I said, the upside down sign, the fact Braille is pointing to the fact there is typos all in it. I do not know if that is covered by the ADA, but if it isn't, it definitely should be. 01:55:59:20 - 01:56:13:18 Lilith And if it is, people should pay better attention to it. And again, that shouldn't be strictly the Braille is to look exactly like this and me exactly with texture. But they should at least make it so that Braille is legible. 01:56:13:24 - 01:56:16:24 Erin Croyle So the good quality control component there. 01:56:17:01 - 01:56:24:10 Lilith So that if you put your finger on the door, it does not slice your finger right through when you try and read if you're going to the right restroom. 01:56:24:12 - 01:56:25:18 Matthew Right. 01:56:25:20 - 01:56:53:19 Erin Croyle Lilith, I like to describe you when I tell people about you because I really admire you. I describe you as a firecracker and it's, ah, my my grandma used to say, and I find it to be a great term. I say this because earlier you mentioned reluctance to bring it up, and I'm curious what that reluctance is given what a strong advocate you are. 01:56:53:21 - 01:57:14:21 Lilith Mostly, I'm just pretty sure no one's ever brought it to their attention and it's left the reluctance to bring it up. Then me wondering if they're actually going to do anything about it, if they're going to go, yeah, okay. And then turn around and say how annoying I am without ever fixing the Braille. It's more of I want to make sure that if I say something, it will mean something to someone, not just me. 01:57:14:23 - 01:57:38:11 Lilith Spelling hot air from my mouth to no avail. And I would like to advocate for important things like I am doing right now rather than talking to the wall. I'm not saying you shouldn't advocate. I'm saying that I would. Most of the time I would, but I don't like that It never goes anywhere. 01:57:38:13 - 01:57:56:14 Erin Croyle Yeah, it's exhausting, isn't it? Yes. You know, the ADA was written before the Internet even existed and before smartphones were here. So if you had a chance to modernize the ADA, what would you do? What would you add? What would you change? 01:57:56:16 - 01:58:28:24 Matthew Make sure all websites are mandated that they become and be made accessible. There's a lot of websites that are still not accessible. I would think about AI and how that could potentially benefit people with disabilities. I would think about the use all smart devices like I just recently in my bathroom, put in smart light bulbs and I can now say, Hey, Google turn on my bathroom lights and it'll do it. 01:58:29:01 - 01:58:51:18 Matthew It's important that we get with the times and what the modern world is. And I don't know if the ADA does that. So those are things I would like to see. And unfortunately to Erin, I need to get ready to run. I have to get to the gym and try to get my summer beach body going. 01:58:51:20 - 01:58:53:22 Erin Croyle Matthew, can I ask you one last question? 01:58:53:24 - 01:58:54:21 Matthew Sure. 01:58:54:23 - 01:59:02:17 Erin Croyle We've talked a lot about what you would change. I want to know how we can change. 01:59:02:19 - 01:59:23:10 Matthew By working together. Let's say Wilson. I worked on a project together, right? She's coming at it from being a person who's visually impaired. I'm coming at it from being Mobility Challenge. Why can't the whole community, why can't the whole 36 million Americans in this country work together to challenge lawmakers to say, I'm tired of you threatening to cut Social Security? 01:59:23:10 - 01:59:48:01 Matthew I'm tired of you not passing legislation that actually would benefit people with disabilities. Right. There was a huge chunk of the Build back better act that the president put forward that was going to help people with in-home care and other elements of things that impact people with disabilities. But that got taken out. Why did that get taken out? 01:59:48:06 - 02:00:11:13 Matthew And we need legislation that is working with the new generation of the ADA in the new world that we live in. And because the ADA is so old, can we really see that and can that really be the case? So yeah, I think it's a matter of all of us working together to make the world as best as it can be. 02:00:11:15 - 02:00:14:08 Erin Croyle I love it. Go get that beach body. 02:00:14:10 - 02:00:21:14 Matthew I will. I will work on that. But it was very nice to see you guys. And thank you for having me on the podcast. And if I can do anything else, let me know. 02:00:21:16 - 02:00:31:06 Erin Croyle Oh, we're going to talk dating soon. I got to. I got to think that one over for. So what ideas do you have to modernize the ADA? 02:00:31:08 - 02:00:54:14 Lilith I agree with what Matthew said. I think that more technology should be incorporated into it because accessibility on computers is very different. Like, I am not endorsing any specific company here, but I turned on my Mac for the first time and said, Set up your accessibility. I turned on my Windows computer. It was the tiniest font ever. The mouse was invisible. 02:00:54:16 - 02:01:25:16 Lilith I had to install like 16 drivers to get my accessibility onto it. So again, I am not dissing Windows. They are great, but I think they really should incorporate a regulation for how computers should be accessible without people having to turn their pockets out just to be able to work from their computer. That said, also they I, I think that that should also be improved to optimize accessibility for anyone who would need it, like close captions are often very inaccurate. 02:01:25:17 - 02:01:39:22 Lilith Most days I cannot get Siri to turn on voice over even if I wanted her to. She's like, What? What? What? So technology should be a bigger part of the ADA as it becomes a bigger part of our lives. 02:01:40:02 - 02:02:00:17 Erin Croyle And I imagine because technology's hard if you're not really savvy anyway. And so if you add that component in with disability and then you also think about how useful it would be to just be able to go to the Mac store, but then how much work it is to plan trips to get out to wherever because of your disability. 02:02:00:17 - 02:02:06:23 Erin Croyle I mean, it must just add so many extra unnecessary layers to your life. 02:02:07:00 - 02:02:07:22 Lilith It definitely. 02:02:07:22 - 02:02:29:13 Erin Croyle Does. What do you think could help peel the onion, if you will, of those layers, making technology accessible? What else do you think our society could do to just take some of those steps away that you have to take to make sure things are accessible for you? 02:02:29:15 - 02:02:59:01 Lilith It's different for me since my disability is different from Matthew's. I do not require a wheelchair, but it is still very difficult for us to plan an outing because we cannot see. No one can control the sun, but we have to make sure it's very dark outside. It's just a lot of planning for us. And if there are more universal design, it may be easier, like better sidewalks, better regulations for people on the road, stuff like that. 02:02:59:01 - 02:03:06:22 Lilith That will make it much easier for us to travel more freely without it being like four days of planning for a one hour outing. 02:03:06:24 - 02:03:15:18 Erin Croyle We talked a lot about vision impairment, but I mean, your albinism must also affect your daily living greatly. 02:03:15:21 - 02:03:21:17 Lilith About a bottle of sunscreen. Every time we step foot out the front door for playtime for that. 02:03:21:17 - 02:03:31:20 Erin Croyle Is there anything you think as a community we could do better or do you just have to adapt to the places that are indoors? 02:03:31:22 - 02:03:44:20 Lilith We adapt to that, yes, but a possibility will be a shade. Your area is for people who don't like bright light or who cannot cope with bright light like me and my siblings. 02:03:44:22 - 02:04:09:16 Erin Croyle It's interesting you say that because something I wanted to touch on before we go is when we talk about accessibility. Sometimes it does mean taking away like crowds can be very overwhelming and light and sound can be very overwhelm. And a lot of the things that they create that are meant to be accessible are taken up by people with kids who don't need it. 02:04:09:16 - 02:04:20:02 Erin Croyle And the offerings are so few and far between. I think people forget to consider all those outliers that impact people so greatly. 02:04:20:04 - 02:04:53:24 Lilith Yes, that was what I was saying about accessibility, benefiting everyone without people actually just using stuff they don't need to and blocking people who need it because like I said, people will just stand in wheelchair ramps. Even when they see a wheelchair coming. They will just stand and stand and stand until I get run over. So it's very hard to balance out using accessibility, how it benefits everyone and having people hog resources and make it hard for people who need the resources to get them. 02:04:54:01 - 02:05:21:15 Erin Croyle Louis I'm curious of your perspective as a teenager. I mean, you must have had to grow up far sooner than necessary because of your disability and the lack of accessibility around you. Can you tell me a little bit about that? I know it's your life and that's just what it is, but you must see the difference between what you have to do every day and what your non-disabled peers have to do. 02:05:21:17 - 02:05:46:02 Lilith Again, with my school. Most of them don't have to argue with the teachers in quite the same way I do. Like yes, math teacher. I do need double time on this quiz. Unless you want me to fail or. Yes, Mr. Biology Teacher, can you please blow up my assignment for me and these are examples I have. And I'm not saying I have had these exact experiences, but it's just like that. 02:05:46:04 - 02:06:07:00 Lilith Mostly I notice the doctor's office. I have to be very aware of everything that's wrong with me. Well, not wrong of me or everything. I have all my diagnoses, everything in my medical records, because they don't get it. And while life hasn't quite an accessibility issue, it is definitely something I've noticed that is different from my peers. 02:06:07:02 - 02:06:26:07 Erin Croyle And you nailed that on the head. It's it's interesting. That was something I had to learn, too, with my son. I know more about his condition than a lot of his doctors because once again, going back to schooling, disability is not taught to doctors. It's like a just a just a drop and then they move on. 02:06:26:09 - 02:06:41:17 Lilith I've had them multiple ophthalmologists who don't understand albinism and will chase my eyes around. And so I'm like, Stop it, you are an ophthalmologist. You should know this by now. Wow, You do not chase someone's eyes around when they cannot stop their eyes from moving. 02:06:41:23 - 02:06:43:24 Erin Croyle Is that painful for you? 02:06:44:01 - 02:06:48:18 Lilith My eyes moving. It's more painful when I try and make them stop. 02:06:48:20 - 02:06:52:12 Erin Croyle Do you feel like you had to grow up sooner because of all of this? 02:06:52:14 - 02:06:57:23 Lilith I feel like I had to grow up a little sooner in certain ways, but not overall. 02:06:58:00 - 02:07:00:19 Erin Croyle And did you think your parents buffered you? 02:07:00:21 - 02:07:19:14 Lilith Yes, I think they did a lot with the planning stuff. It was harder for me to do some of the kid activities without it becoming a really long conversation about how I will cope with it. But mostly that was from my parents. And so yes, they helped me a lot. I think somewhat they have to grow up a lot faster. 02:07:19:14 - 02:07:25:11 Lilith They had to be thrown right into the challenges of parenting immediately. 02:07:25:13 - 02:07:45:07 Erin Croyle I can very much relate to that as a parent. It's it's it's upsetting because you care so deeply about your child. And to see a world that doesn't accept them, it stabs you through the heart. Well, what are your wishes, hopes and dreams for the future? 02:07:45:09 - 02:07:47:11 Lilith My future in general? 02:07:47:13 - 02:07:50:15 Erin Croyle That's a good question. I'd like to hear both, actually. 02:07:50:19 - 02:08:15:08 Lilith Well, I would like to be a doctor, so I will need to go to medical school, make sure my professors understand my accessibility. Managed campus for the future. I want accessibility and disability to be more accepted by the general community instead of it being some thing where if someone says the word disabled or disability, it's a big bad word. 02:08:15:10 - 02:08:30:22 Lilith I just want it to be more of a I'm not sure what the word is, just more of a common thing so that if you don't go out, you're not just an inspiration or a waste of something, that you're just another person with some additional leads. 02:08:30:24 - 02:08:41:03 Erin Croyle Yeah, I like to think of it as, you know, disability is a natural part of the human condition. It's just who we are. It'd be boring. We weren't different. 02:08:41:05 - 02:08:42:22 Lilith Exactly. 02:08:42:24 - 02:08:50:23 Erin Croyle Lilith, it has been great talking to you. I always love talking to you. And I'm going to think about something else so I can talk to you again soon. 02:08:51:00 - 02:08:53:02 Lilith Yes, that would be wonderful. 02:08:53:04 - 02:09:21:24 Erin Croyle Thank you. And thank you listeners for joining us. We're just getting started with this podcast and can't wait. Bring you more please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

Reaching full potential. Becoming independent. We want these things for our children. For kids with disabilities, providing the assistance they need while trying to achieve these goals is like walking a tightrope. Help from even the most well-intentioned people, often is not helpful. It's not just educators, parents unintentionally hold their children back as well.  Dr. John McNaught has made it his life's work to reshape how we teach students with disabilities. Early on, he realized parents need to be educated too. The lesson plan: SELF-DETERMINATION.  He has witnessed first hand the transformation that happens when you give children the tools to make decisions for themselves. He has watched students move from self-contained classrooms, to general education classrooms, and onto college campuses.  Take a listen and learn how powerful self-determination and meaningful inclusion can be when done right.   The Odyssey: Parenting. Caregiving. Disability.    The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  You can learn more about I'm Determined here.  You can read the research article Dr. McNaught's mentioned about struggles students face because they don't understand their disability here.      TRANSCRIPT Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's Syndrome in 2010. His diagnosis hit me like a freight train. It's the most common chromosomal condition diagnosed in the United States. Yet so little is known. I was a new parent with a newborn son who was the first person I ever met with Down syndrome. I had so much to learn. So I started right there next to him in the neonatal ICU. Now I'm here working with the Center for Family Involvement at VCU's Partnership for People with Disabilities. This podcast digs deep into the joys and hardships we face. We're going to celebrate how amazing the odyssey of parenting, caregiving and disability is. But we won't shy away from the tough stuff either. Something a lot of families struggle with are the many roadblocks our children face throughout their lives. These roadblocks are in our communities, our workforce, our schools, even in ourselves. Thankfully, more and more bridges to independence are being built for our children. One of those bridges is a program called I'm Determined. This state directed project funded by the Virginia Department of Education. Works with youth, especially those with disabilities, to help them steer the course of their lives rather than being the passenger. It's all about self-determination. The program isn't just for youth, though. There's a family component that helps parents learn how to better listen to and support their children. And there are resources for educators as well. Joining me today is Dr. John McNaught. he was one of the first people in Virginia to implement student directed IEP meetings. His focus has always been bringing the student voice to the forefront. He's also the founding member and principal investigator of the I'm Determined Project. so. John, I'm so excited to talk to you. I've known about I'm determined for years, but last year was the first time I was able to attend the summit working with its communications team. I have to be honest, while I've known about I'm determined for ages, it's hard to fully grasp what it's about without being there. I would love to start with you as a founding member. Summarizing, I'm determined in a nutshell, So in a nutshell, I'm determined is all about opportunities to practice self-determined behaviors in an environment that supports those behaviors. And so it's that simple. I think a lot of times we where we fail with self determination is we do a little bit of an instruction and we toss a kid into an potentially unsupportive or scary environment. And what if we approached life that way? What if the first time you drive a car, you know there's no instruction or there you read the manual and then you just get in the car and drive by yourself with nobody there. And so it's all about scaffolding supports providing that environment, right? You become competent in your ability to do things like advocate or problem solve, and you do it around people who are, you know, supportive. And that gives you the ability and the confidence then to go try that somewhere else like school. So that's how you know, in a nutshell, that's how I would describe it. There's a lot of probably 10,000 intertwining pieces that make that happen. But that's the best case. John, before we dive in deeper, there's something that kind of always intrigues me reading your full bio, right? I wonder what brought you to this place professionally. And I ask this because until I had my son, I was totally ignorant, to the struggles and marginalization that people with disabilities face. And by the time my son was one, I was then immersed in advocacy. my son, he's just opened up my life in this spectacular, fair way. So I now see all the room for growth in our educational systems, our workforce, our community that I wasn't aware of. So I'm really, really curious if there was an event or a person or something that put you on this path. Yeah. So there are multiple things. So I'll start with, know, I grew up in a small town. It was a kindergarten through eighth grade school and everybody knew everybody and it was an inclusive model. our football coach, his son, was an individual with Down's syndrome. He's the same age as us. Chris was his name was in all of our classes he was the manager of the football team. And, you know, he was just one of one of the guys. Right. and then we graduated eighth grade and we went to regional high school. And my mom was actually a teacher at that high school. And I can remember, like after about two weeks, you know, I probably wasn't even in two weeks realizing, Hey, where the heck is Chris? I haven't seen him, you know, in two weeks. And I remember asking my mom and I'm like, Hey, where's Chris? And she's like, What are you talking about? I'm like, I haven't seen Chris, you know, since school started. And she's like, Oh, well, you know, he's in the special ed program. And I'm like, All right, well, where is that? And, you know, I mean, you know the story, right down the hall, down the stairs, around the corner, next to the boiler. And that just kind of stuck with me as just not being right, not feeling right. He was such a part of our everyday life. And then it's like you don't even see the kid. that's how it was for four years, you know? I mean, we you know, we tried to, you know, break him out, but inclusive education was certainly not a thing. And social inclusion was definitely not a thing. And so that that kind of stuck with me. And then honestly, I did some volunteer work in college at a place called the Virginia Home for Boys you know, it was just a lot of kids would with different stories, but some of it was behavior related. Almost all of it was disability intersectionality of disability and and some other issues. 01:06:31:12 - 01:06:40:21 Unknown And, you know, just kind of watching them at such a young age like, you know, teenagers just in this home, residential, no choice, no voice. And it just kind of brought me back to this idea of Chris and then I graduated college and I didn't know what I wanted to do. And so I decided to hike the Appalachian Trail from Maine down to Georgia. And in the middle of that hike in Virginia, I ran into this group of kids from this wilderness school, and they fed me an and remarkably, one of the kids from the Virginia home for boys that I had volunteered with was a student in this wilderness school who recognized me. And so we started having this conversation and it turned out this was a school for, you know, kids with ADHD, emotional disability, learning disability. And they were there because they also had some behavioral issues. So they were either there because they had a problem in school, their parents sent them or the court sent them. And I was like, this is this is interesting. And we just kind of hung out all night. And so I got off, finished the trail and I was telling my dad how I didn't want to my major, what my undergrad major was business. And I was like, There's no way I'm going to work in business. And he happened to see an ad for a wilderness school. I go on the interview and it's that school and those kids are still there. so I started a week later. did that for three years, living out in the woods and eventually decided that, you know what I want to learn more about special education, went back, got a master's degree, and then went into teaching. And my first kind of foray into teaching was I was given a room. So I was working was I got hired as a teacher of students with emotional disabilities, and they gave me my first classroom and it was like, you know, I don't know, an eight by eight closet with no windows. And an A caseload of 25, but I had seven who were seniors who were 100% self-contained I was just like, wait a second, we're supposed to hang out in this room for 6 hours together by ourselves. So I was like, This is crazy. I don't think we're going to do this. I will never forget this. I thought this was such a great idea. I on the first day of school, I handed them all their IEPs and they said, What's this? I was like, Get your IEP. And they're like, What's an IEP? Whoa. Now I can start getting a little bit nervous. And then, you know, back in the day it was called emotional disturbance. So they see their name, they see the word emotional disturbance, and they're starting to get, you know, what the heck's emotional disturbance? Well, then they start reading the present level. And in hindsight, I probably should have read those a little more closely through a different lens. So they were super negative, right? It was basically summary of every bad thing that kid ever did and every, you know, And so they're starting to get upset. And I'm like, Who wrote this? And I said, This is my first day teaching. I mean, look at the back page, see who signed it. Like, I didn't write it. So, you know, we sat we started having a conversation and these kids didn't know they were in special ed and they had been in special ed since third grade. They're now 18 or 17. It's fall semester of senior year. And so I talked to the principal. I'm like, Yeah, we're not going to do this self-contained thing. We're going to these kids, This is crazy. And, you know, we moved to an inclusive model with the idea that if there's behavior problems that I'm going to have to deal with it and we're going to, go back to the old model. If we have to. And, you know, I just watched trying to give these kids some choice, and they were just so unwilling to take the leap because they'd been told what to do forever. And now they're 17 and some new young kids in their talent on that. They're in charge and they're like, I don't think so, man. Like, I don't you know, I don't trust you. I don't know you. I don't even know what to do and how to be in charge. it was a hard year. We made a lot of strides. But you cannot in one year make up for six years of, you know, self-contained education or lack of education. And so I was a little, you know, like, all right, we got to change this whole model. And then that that same year at the time we had what was called IEP Day. And so it's April and I had like 27 on my caseload, including and those kids were all graduating. So they didn't they didn't need I didn't need to rewrite their IEP, but 27 kids every IEP do on the same day. And you know, for anyone my age or older, you'll remember pre computers, we had the NCR paper. So each sheet of the IEP was like seven pages thick and you had to write really hard. That's right. Right. So, you know, I wrote 27 IEPs, I'll do the same day. And so then the kids would come to school until noon and then leave because it was a half day. And then we were supposed to schedule 27 IEP meetings from 1 p.m. to 9 p.m. like in every special. The teacher in the school is doing this. And so I was like, This is crazy, but okay, this is what we do. So we're going to do it. And I told the kids, I said, Look, if you come to your IEP meetings, I know I knew from asking them they hadn't done it before. You come to your IEP, meet me, I'll buy you pizza the next day. And they're like, Yeah, yeah, yeah, we'll see you there. So I thought they were going to show up. And so the day comes, they leave the meeting start. I've got administrators just walking in and out of classrooms, just signing their name and leaving. I've got, you know, parents who, you know, some want to sit down and have a meeting, but some just want to sign it and walk out the door. And out of 27 possible kids, I had zero show up. this is like a bad origin story. I was so annoyed at those kids for not showing up. Right? And so I go to school the next day. I'm like, I can't believe you didn't show up. What is the deal? I was going to buy you pizza. And they're like, they're like, Look, dude, school ended at 12? So let me just get this straight. You want me to come back to school? That which I hate? You want me to sit in a meeting with a bunch of people? I don't like so I can hear about all the things I can't do? They're like, No, thanks. And I'm like, WhatIf you had looked at the IEP, I wrote, but they had no say in it, right? They didn't. You hadn't even seen it. And so in hindsight, not a big shock. They didn't show up. So I said to them, out of out of frustration, you know what? Anyone who's not a senior, you're going to write your own IEP next year. I'm just not going to do it. And I just happened to go to a conference a month later and met one guy out of Northern Virginia, and he had this grainy VHS tape of this kid participating in his meeting. And I was like, Oh, this is a thing like, we're doing it like this is a thing. And so the next year I started what I called back then, student led IEPs. we went for it and we did it it was awesome. It was a lot of work, but it was a lot of relationship building and it totally changed. It changed the kids, it changed the parents, it changed the administrator perspective of the kids. It changed the general education perception of the students. it was really just this magic thing that they just kind of took off. And my wife was also a special education teacher at the time in the same district at a neighboring high school. And she started doing it and it started taking off. this is all kind of pre undetermined. Right. I'm a term wasn't a thing yet. so that's a long way of around how I got to coming up with this thing called undetermined John I just have to say what really strikes me in my heart as a mother of a kid with Down syndrome and as a person who helps other families, you know, do this, it is just like, wow, that was one student. This all started because of inclusion with one student back in elementary school. And I just think, so often, parents still have to fight to have their kids included. You know, they you have a certain code and automatically you are put in a self-contained classroom, you're segregated. And that argument that we still have to make constantly as advocates, which is, inclusion is better for everyone. students with disabilities do as well, if not better, and students without do as well, if not better. And your story is like this beautiful example of what a difference it can make. Just seeing someone with a disability in the same room as you. I mean, that changed your entire trajectory. It did. I'm floored. I just to me, it speaks volumes to inclusion and then to hear the stories, about the IEPs, that does not shock me. I mean, we're still at a place where a lot of schools,  you have to fight to have a student lead their IEPs. I mean, you know, I've been doing this now for 25 years you know, I'm finally I'm finally the old guy in the room who's like, we've been talking about this for 25 years. People like, come on, You know, I mean, I can remember thinking, oh, I'm never going to be able to say that, yet here I am. Like, we're still talking about getting kids involved in their IEP meeting, what's happening now we're trying to fight against, right, is that students participating in their IEP. It's it's awesome. It's a feel good moment, but it is not going to move the needle for the kid. Okay. It's a it's a once a year thing. What moves the needle for the kid is opportunities to practice being self-determined at home, in school and in the community on a daily basis. Right. And so that's where, you know, and you can still do still what? IEPs because it's fun and it's cool. Just can't be the only thing you do. And so it's all about those opportunities to practice. You know, I look at it now, you know, my lens now, 25 years later is, you know, I'm a researcher, I'm a teacher, but I'm also a parent of two high school girls, one of which has a disability, has ADHD, anxiety and OCD. And so I come at this through those three lenses. Right. And if you're only working on this stuff at school, it's not going to cut it, right? You've got to have families and teachers speaking in common language, working together, providing those opportunities. And I watched it with my own kid because, look, my my daughter is at the high school that my wife and I taught at. Okay. I know almost every teacher. I know all of the administrators. All right. She has a wonderful plan. I have all the privilege in the world. I mean, I am a white male with a terminal degree, and I have all the connections at the school. Right. You know how my kid gets accommodations? She advocates because when she wasn't advocating, it wasn't happening. And if it's not happening for me, right, then it's not happening for anybody, I can promise you. Right. Because if there's anybody's kid that should be getting it, they would be like, Oh, look, watch out for this guy, right? Make sure his kids are getting what they need, not the case. And so I'm like, all right, you know what? Then you're going to go do it. And luckily, you know, we've been raising her as a self-determining, self-determined child for so long. She was like, okay. and what a change. Like, what a change. Like, I haven't had to have one conversation in a year and a half with anybody because she's taking care of it. And that was my like, light bulb moment. Like, Wow, you got to put it in the hands of the kids. You do. And that's this is perfect is I want to talk about that more. I want to talk about I'm determined. And I think also the beauty of I'm determined, right, is one, it's an ongoing project. It's not just the summit, but also, you know, you work with kids who have disabilities, but those disabilities vary greatly. And I think a lot of times we talk about student LED IEP, but what about those students who don't have, traditional expressive language abilities, who have a very hard time communicating in a way that, non-disabled people understand? You know, my son is a perfect example. I have had him attend his IEP meetings since preschool I'm still working to have that participation be meaningful because that communication piece is just not there yet. So I would love to hear more about I'm determined and how you help kids of all levels and ages and all of it.   so.  Communication is like that's the heart of everything, right? And it's so hard being a parent. And I'm a parent with a degree in special ed and I still feel like I don't know, I don't know everything, but to I had to get out of this mindset of like, automatically looking at the teacher as the expert. Well, I'm not going to question right. Even myself and also understand you as a teacher. They don't necessarily get exposed to all of the resources that are out there, especially around communication. Right. Technology's changing every minute. And so a lot of the work we do is exposing teachers, kids and families to assistive technology because there is so much out there. Right. And not everything has to cost $10,000. Right? There are all sorts of apps or functional communication devices, speech generating devices. And what is so one of the things we did that I really love is is through I'm determined and a t tac in the College of Education at James Madison University is we opened up what we call the Accessibility and Inclusion lab where we've invested, you know, a quarter of $1,000,000 in technology and accessibility and we open it to free service teachers, in-service teachers, parents and kids. Let's say you have a kid who's strong, who's who's got some communication needs and you can't necessarily figure it out. You come to the lab and you can try everything, right? Because if the kid isn't motivated to use a device, it's not going to be a good fit. I've had kids weighing iPads across the room because they don't want the iPad. Right. And so it's a heck of a lot easier to come to us and throw our iPad across the room than it is for a parent to drop two grand on an iPad and then it's broken or a school division, whatever. every kid is different. Every need is different. And again, it's that opportunity to practice, right? So exposure and understanding that, not everyone's got the budget or the ability to bring all these pieces together for somebody to try. And, you know, that's one of the goals of the lab. So like, come in, explore it. And we've seen you know, we worked with a student, Chloe, who's an amateur one youth leader. She's actually about to graduate from VCU as a journalism major. She has cerebral palsy. She absolutely hates to use a speech generating device. Now, I work with Chloe all the time. I've known Chloe for almost a decade. I don't have an issue understanding her. But if you just met her, you're potentially going to have an issue. for Chloe, it was like it was all about speed, right? If I asked you if someone asked the question. Right. The fast processors can always answer first. If she's got to always type it into a device. Right. Especially if it's a kind of a antiquated device. They're already on six questions down. She's still trying to get her device geared for question one. There are question six, And so, hey, understanding that we got to find the right piece for her, but her also understanding that there's going to be times where, although it's not her preferred mode of communication, she's going to have to use something to get her point across. And that for her, that was a process that she really had to kind of come to. And then having her the ability to try all this new technology and be like, Oh, so I can have something preprogramed and boom, click and I'm right in it. it's sad sometimes. You see kids are still walking around with like, like a picture exchange communication system book, right? The thing weighs like 600 pounds. You know, you got to flip 80 pages to get to hamburger. I mean, I don't know how functional that is, right? I mean, are you going to be walking around with that thing in the community? I just think this idea of embracing technology and understanding that everyone has a desire to communicate, right. And if they can't do it verbally, they'll do it through behavior. we've got to find out where they are. I've had students lead IEP meetings with every disability you can imagine. one of my first years, I had a kindergartner with Down's syndrome, run his own meeting, show his PowerPoint. You know, I ran into the kid like two months ago. It's got a full time job at Costco. And I was like, Oh my gosh, oh, my gosh. She's I'm like, oh, he's got like a full beard. You know? I'm like, I remember you from kindergarten. it's accessibility in the ability to understand that these resources are available. We got know how to source them. And that's hard That's hard for families. That is I mean, you say JMU for those listening, that's in Harrisonburg, which is kind of central Virginia, beautiful town. And you mentioned TTAC. So I want to stop for clarity that one, if you can explain TTAC. But also the question is, do you know of other places that do a lab like this where where can people find something like this locally? So Virginia has a model where as far as technical assistance to schools for special education, we have offices at seven different state universities and we cover the entire state. We're free resource the schools. And so for Virginia, you know, that's great, right? There are some other universities in Virginia, George Mason, Virginia Tech, that all have access to these kind of resources. But the reality is, no matter where you are in the country, universities is where you need to look. if you're in New York, I'm looking at, you know, maybe Cornell, if that's the area of the state you're in, what is their special ed? You know, who's our special ed department head? What do they have to offer? Because, you know, in my experience, you're going to have a better chance finding it at a university than you are at a local school system. Right? I mean, local school systems are just not equipped for funding wise to create this kind of they can do it for individual kids potentially, but they're not going to have a room where you can try all these different devices out. as a teacher prior to coming to the university, that was not on my radar. Mike. I had no idea that that's where I should look. And so that's where I would start as a parent. That's good to know. So I want to move towards we've kind of gone everywhere, so let's go backward so we can go forward. So you start the student letter IEP process and then how does that kind of evolve into I'm determined, there was an opportunity for a job at James Madison at TTAC. I decided to interview for and I got it. about a year later I was 25. And then in 2006, we were tasked the Department of Ed, through the Tea Tax, were tasked with coming up with a solution to or post-school outcomes for individuals with disabilities. we did a bunch of research and some things we found out were that at the time in Virginia, kids were not attending IEP meetings. Kids did not know what their disability was. They couldn't tell you any of their strengths. They couldn't tell you any of their accommodations. They couldn't tell you any of their rights under idea. you know, we had poor for post-school employment outcomes, for post-school secondary education outcomes. based on that and in our research, we said, well, self-determination sounds like an area we need to dig deeper into. And at the time, Mike Meyer out of Kansas was doing a lot of research that we would kind of grasp on to. And then the second piece was we knew it had to be in the very beginning teacher friendly, and so it had to be something we had to create something that teachers could use quickly that didn't feel like a curriculum because they weren't going to do it. And so we brought in some teachers from across Virginia, we came up with what we call the three core tools of I'm Determined. So you got the one pager, which honestly is just a simple way to come up with strengths, preference, interests, needs. We created the goal plan because another piece of that data was that kids had they didn't have short term goals. They didn't have long term goals. There was no real goal setting going on. So the goal plan and then the Good Day plan, which was just simply like, what's going on now? You know, or what happens on it? What on your perfect day, what happens? Is it happening now? What needs to happen to fix it and who can help you? And those were three easy tools and everyone loved them  and they jumped on board. And then I got to focus on, okay, as a result of these three tools, let's keep this student let IEP train. And I started moving, right? And so we brought in some professional film crew and just started making movies of kids leading IEP meetings, kids talking about their disability, understanding what their strengths were general education, teacher, special education, teachers, administrators, parents. Right. And honestly took I'm determined from from the nine pilot schools we started with in 2006 to, all the school divisions in Virginia, plus over 40 states that I've worked with over the past. You know, however many years has been the video storytelling. Right. Because people can see themselves in the stories. And that's powerful. And they want it. They want to see it, to believe it kind of thing. focused a lot in the beginning on driving around the schools in Virginia and shooting video, that was probably, you know, I don't know, maybe the first ten years of work. And then with that, this idea started in the year two. Okay, Well, that's the teachers now. We got to hit the kids directly. And so we came up with this idea of a summit. And so the very first summit, it was just a youth summit. And we had 15 kids with disabilities from across the state. And had kids with L.D., kids with autism, kids with Ida. And, you know, we had one kid who was the leader she ran this this two and one half day summit. And the whole time I couldn't get rid of the parents. So the parents are sitting outside our doors trying to, like, poke their head in, see their kids, okay. And they're driving me crazy. And and I wasn't a parent at the time. Okay? My wife was pregnant with our first kid, I couldn't really know why these parents are killing me and my colleagues. Like, we need to do an event at the same time for the parents, I was like, Man, I don't want to do that. That's going to be a pain in the butt. And she's like, It's going to be easier than this. And I'm like, All right, let's do it. And so the next year, five of those kids from the original summit came back as the leaders, we we said, All right, parents, we got something for you, too. And we went from like, you know, a summit of 15 to 20 to 50. and we found that and the parents had so many questions, right? So many questions around disability, around opportunity, around just navigating school and life and these these parents formed this like, support group outside of us back in the times everyone's using Facebook. The youth formed their own support group on Facebook and left us out of it. you know, we did another year of 50 and then next year we're at 100 and 150 you know what I found with parents? And this kind of speaks to why we really try to get a wide array of individuals with disabilities as if my kid has ADHD. I want to hear from another parent whose kid has ADHD. And if my kid has Down syndrome, I want to hear from another parent whose kid has Down syndrome. And at first I didn't totally understand it, but I kind of get it more now because it's just that like they can totally relate, And so we made sure that we had a wide range so that everyone had. if I'm if my kid is, 13 and just kind of going through it and I can run into a parent whose kid is now 19 or 20 and they can kind of tell me all the hoops they jump through and all the barriers they broke. For the parents, they can see the light and they learn some tricks for the kids, This is the crazy part. Every time a kid came to the summit and I wrote a whole article on this, they they'd say, I thought I was the only kid with L.D.. I thought I was the only kid with dyslexia in the world. I thought I was the only kid with intellectual disability in the world or autism. And then I come and I meet all of these other and this kid's got the same disability as me, and they're in college. Like, I can do that. That's a thing. And it just started right. The ceiling, just their own ceiling started raising. And so then we knew at that point, okay, we got the kids, we got the parents, we've got the special ed teachers. Now we got to raise the general led ceiling. you know, if I could do the whole thing over again, I would have never build this as a special ed initiatives. honestly, after about year five with my work with schools, I build it as an all kid initiative. And if you want to make inclusion happen, that's how you do it, right? All kids need these skills. All kids need to tell you what their strengths are, what their needs are, and by doing that right, I've got schools that every single kid's got a one pager, every single kid's got a good day plan, and it just changes. It's just more of an inclusive mindset. So I wish that I had that kind of foresight way back when we first started it, because the places where I started as a special ed initiative, it was really hard to kind of remarket it as something for all kids. And that's still kind of drives me crazy. Yeah, I can see that. Although I think, it may not belong to you because it's your baby and you've been doing it a while, but it is still young and there's so much room for growth. And I love that you've brought this up because I'm quite curious, you know, when you were talking earlier about special education in that first room you started in and that mantra that we learn as advocates, special education is a service, not a place is so important. And hearing what you're saying now, when I speak to university students and I talk about inclusion with them, and one of the things they mention is, is the failure of higher education to teach special education to all teachers, including general ed teachers, because these practices, these practices benefit every single student and co teaching models are beneficial, all students. And we just see in our structures that lack of funding of public schools, the lack of education in higher education to make this happen. John, if you could change something what do you think the the thing is that could have the most impact? Yeah, honestly, you hit the nail on the head and I'm I'm involved in a project and that's what we're doing right now in it is re-envisioning educator prep programs because we can't keep churning out teachers who are not prepared. And so like you said, especially with the teacher shortage right there, kids, students with disabilities are going to be in general education. And that's just a fact. End of story. A lot of our educator prep programs, right. You can you can say I want to be a high school math teacher. And outside of your intro to Ed class, never hear the word disability. Ever. And then you come out and you're teaching algebra one in 15 to 20% in the kids in the room have an IEP and you even know what it stands for. Now, what kind of that model makes no sense right, Right. And so we're working on both at, you know, with the Department of Education and a select number of universities in Virginia is just, hey, that model makes no sense. We need to do better than that. The other side of that coin is this. You're going to want you're going to college because you want to be a special ed teacher, okay? At some colleges, you can go through four years and never interact with a general education undergrad, and then then they get a job and it's like, Oh, cool, I want you to go co teach math. And they're like, Whoa, what? I that's not what I do. I'm not. I'm not that. And so we're failing and on both sides, And so we're teaching this model that is like honestly, like a pre 1975 model. Yeah. And we're still doing it. I came to that realization like maybe two years ago in this, this grant opportunity showed up a year ago. So I was all over it because I'm like, I'm tired of constantly going into in-service classrooms and trying to fix things that need that could be addressed in re service universities. And so to me, like that's what we need to do and that's what I'm excited about kind of moving forward. And I'm a little I'm a little worried about with the teacher shortage, with all these people going coming in my kind of alternate route who aren't necessarily having those classes like that scares me a little bit. But I'm putting my eggs in that basket. We need to we need to fix those educator prep programs. We need to get them aligned. They got to work together they got to understand, like all kids means all kids both and need to understand that. you know, I have hope for the future because I think we're getting there. I think we're we're looking at that model. And I know some universities already have like what I'm talking about, like, I know Radford University in Southwest Virginia has been doing a model like that for years. And guess what? Those teachers come out better prepared because I've seen them. So we can do it. Yeah. And Radford has a great reputation. It's unfortunate. I mean, we have the teacher shortage and then we also are seeing some colleges and universities are losing money and they're having to get rid of programs that were actually hugely beneficial. And I guess we can just I mean, hope is great. So let's hope that it starts to see the pendulum start swinging back. But I think advocacy is also necessary speaking about these things and spreading it. I know so many teachers who care deeply about teaching, but it's a struggle because they have to relearn so much. After going through school and getting a master's here, they are relearning through professional development. And you know that same question like from a parent lens. Yeah, I think what I've learned is that you've got to put 100% of your effort into creating the most self-determined son or daughter that you can because even though I know better, I wanted to solve my kids problems. I wanted to call those teachers out and be like, what are you doing right? And I did that sometimes like, I would. I did it sometimes. And it didn't have a it didn't have any effect. Right? And so watching my own kid learn to navigate the system and just be fearless about it because they they've been practicing it for so long that, you know, as a parent lens, that's what I'm going for. And I'm going to make, you know, my kid has more significant support needs. I'm going to make sure 100% they have some kind of communication device. So when I'm not there, they can communicate those needs and we're going to practice that all the time. that's just as a parent, that's where I am. And, you know, I'm going to feel like, okay, my kids prepared. Well, let's touch on that more, because I think and I bet you've run into this a lot and I bet the parent summit helps. But, as parents, you know, that parental instinct to protect your child is so ingrained in us. Yeah. And then when you combine that and having a child with an intellectual or developmental disability, that protection radar is just up a notch. And I think as parents, we can sometimes do a huge disservice to our children in just thinking that we're protecting them and thinking that we're helping them and thinking that they need these things. We kind of hold them back a little bit. So I'm curious, you know, how often you see that and also how you help parents kind of understand how detrimental it can be, though. I see it all the time and I've been guilty of it myself. But so I think with self determination right at home you start small. I'll give you this example. So my kids who are now about to be 16 and 17 when they are around five, one night a week, they pick, they pick a meal, they make the grocery list, we go shopping and they help cook the meal cook. And so, you know, here we are at 17 and 16. They're both extremely competent and confident in the kitchen. I've got one who's like a master dessert maker and one who can cook any kind of pasta and loves to grill cook. And so taking the time to give that opportunity to think about when they're in an argument, right, they're only a year apart. Like there were times as a parent where I'm like, You be quiet and sit over here. You be quiet and sit over here. But then 5 seconds later, they're in that same problem, right? So and not every moment, a teachable moment. Right. But your default all needs to be teachable moments. Okay? And that's how you're going to start building that up. Think of choices. Our kids can go through school, Think of elementary school. There's like zero choice built in, Right? I think my kids couldn't even pick where they ate lunch by until fifth grade. You imagine that? And so how can we build some choices and build in some autonomy, as they get older? And this is the hard part. Okay. They've got a decision to make. And I say, look, if you choose this path, these are the consequences, meaning this is what's going to happen potentially you choose this path. These are the consequences. Hard part is stepping that stepping back as the parent and letting them choose the path, especially when it's not the one you would choose. I've watched my kids make mistakes and, you know, cringe. And the key pieces, which we don't do well in school. Okay. Failure Is the middle, not the end. We chose the wrong path. We have some consequences. Let's reassess what went wrong. What should I maybe done, what didn't I think about? And then let's try something again. Think about how they go through school. They fail a test. The next day you're on to New material, right? In their mind, failures. In the end, you can't go through life that way, You've got to learn to look at failure as the middle. And so the more that we can kind of instill that in our kids, you know, my my teaching, my oldest attire, shoes, she's a lefty. You know, at one point I was like, you know what? We're just going to buy Velcro because I can I am not a fine motor skill visual. Like, I just can't do it. And so, you know, also knowing when we're just going to need Velcro and we'll figure this out later, giving yourself some grace, but really looking at how you your family system, how much choice is built in, how much opportunity to try things are built in, how much are you connecting, what they're interested in. You know, when my kids were in high school, they always had a chore list. But this is more recent. The rule was chores had to be done at 3 p.m. on Sunday. Right? And they were just blowing it off. They just weren't doing and it was annoying. And my wife was annoyed and I was annoyed and were nagging them nonstop and it was just unenjoyable and I was like, What do we do? I talk about this stuff all the time and I'm doing everything I said not to do, right? And so I was like, okay, new plan, Here's your chore list, Here's your chore list. This is the this is the plan. I don't care when you do them, but they need to be done by 3 p.m. on Sunday. If they're not, then you turn in your cell phone until they're done. Well, my youngest looks at me and she's like, Yeah, right. You always say this kind of stuff. You're not going to follow through. I don't really care. Mike Okay, let's see, right? First Sunday rolls around, my oldest Saturday, all the chores are done. She's not feeling any pressure. My youngest, Sunday, real five. Still not done. Mike, give me the phone. She's like, now to get the phone back. Do I have to do them or is this just like a time thing? I'm like, No, you got to do it. You get the phone back, right? So she learns. So now, you know, three years later, my oldest still does a on Saturday in my youngest, although she's never missed another deadline, is still sprinting through the house at 259 on Sunday. The difference is I'm not annoyed. My wife's not annoyed. And it's her conscious choice to do it that way. And little things like that. build up our kids. You know, I set this up thinking we're just going to talk. I'm determined. And here I think you might have problem solved. One of my biggest frustrations, I'm going to give this I mean, they don't have phones, but I can think of something. I'm going to give this a shot. So thank you. I think so often, looking at this as a parent, we put people like you, John, and  my colleague Dana Yarbrough, who I just think is the best thing since sliced bread. we put professionals on a pedestal because we see what you say. But to hear you talk about implementing it at home being difficult, it just makes it easier for us to not feel so bad about our failures because you can try so many different things and it depends on the kid, you know? Absolutely. I've done so many things wrong. Yeah, yeah. I mean, and yeah. And then you have a self determined kid who doesn't want to listen to you because they're self determined. And so it's like that. That's what I have now. I've got two teenagers are like, I got this, I got this like, hey, I just scheduled myself for junior and senior year, and oh, my youngest says, and I signed your name. So I'm like, Whoa, dude, there's a line between self-determined and forgery. Like, I need to at least see what you're planning. But they're just taking control. And so, I mean, it's cool, but there's definitely, like, as a parent, there's like, Oh, remember the good old days when I could just control you? Yeah, that's, you know, it's a whole it's a thing. Well, and I, you know, I have an eight year old who? My daughter, they were born self-determined  I just got to hold on to the seat tightly until they're mature enough to make decisions that are not harmful. But I think that's the beauty of I'm determined. Right? So you have this perennial project that is year round where you're constantly working with schools and then this summit and I have to tell you, after finally being able to go to the summit last year and watching these young people just grow so much in three days, it is inspiring. And frankly, it's just electric. So can you kind of walk us through the thought process? Because not every person is born like my daughter who comes out just ready to take on the world. So how do you work on like building confidence and teaching these young people self-determined Nation? what makes the summit special is that it's kids leading kids, kids to disabilities, leading kids to disabilities and the adults really take a back seat and we are there, but we're there if there's a problem, if there's a question, you know, if a student's got a, you know, significant support need and whatever, we can do that. And look, that can be it's two things. It's very scary for parents because I purposely put parents on the other side of campus and I set up, face time stations in case there's, an issue. But it's almost always the parent wanting to talk to the kid and not the kid wanting to talk to the parent. Kids just inherently take care of kids. Right? And so I had a mom who's like, well, who's going to who's going to cut my daughter's food at the dining hall if I'm not there? I'm like, it's not going to be an issue. in a what? And I didn't even set it up right a kid, they all walk together. It's like, Oh, what do you need help with? And I just took a little video and texted it to her of like, Here, here's your kid with another kid and everything's cool, that's not something you teach or train. That's just kids accepting kids and feeling like they're not getting judged. There's no hierarchy. And that's what the kids of the kids talk about all the time. I don't think it's anything we do other than consciously we're not in charge. Right? And so in the leaders, we do a lot of training with our leaders who are anywhere age 13 through 21, and they're trained to, you know, make sure everybody's involved. They're trained to certainly when to ask for help from an adult. But it's just like this, natural kind of we're just going to take care of each other. And for parents, where I get a lot of heat is this is the first time mom or dad has ever like given this level of independence to their kid. I have a better appreciation now for how scary that can be. My younger self found it mildly annoying but I get it because they are away and they're not. they say goodbye in the morning and they're not going to see them again to like 6 p.m.. And there's there's some unstructured time built in there. I still remember this mom. She came back and she couldn't find her son. I said, all right, well, what's what's his name? Because I take pictures of everybody and I look and she's frantic. I mean, tears. And I walked downstairs and her son made a friend and they're in the room shooting pool. And so I just take a picture of them and walk back upstairs. she was just like, there was relief. But there was also just like, shock, right? Like, my kid doesn't have friends. I'm like, well, he does now. I mean, like, I can go get him if, you know. No, no, no. So, you know, it's just it's a big step for parents. And a lot of the Parents Summit focuses on how to take that step. And it's the first steps, the hardest. And then it gets easier and easier and easier. and I think once the parents start hearing from other parents who have been through exactly what they're going through currently, that's really powerful for them. I know for myself and my kid was first diagnosed we got done with the initial eligibility and the special ed teacher was like, you know, it was like, hey, you know, I have a daughter a little bit older who who is literally a carbon copy of your kid. and just was like, if you ever want to talk secure in And so that's huge, right parents I mean if you think back to like initial eligibility especially if your kid got identified at a young age. Right. You're sitting in this meeting, you hear the word disability and you hear all these other words and you've got 10,000 things going through your head, And you're not even half listening to what everybody's saying. When's the next opportunity as a parent that you have to get all those people together again in the same room? For a lot of our families, that could be years and years are never that feeling of aloneness is a real thing. That's real, right? And so the summit for them just kind of like makes them feel less alone. that's huge. And then immediately when they reconvene that first night, we have a dinner together and the kids don't want to eat with their parents because they've made friends. And for some it's like, oh, it's it's hard, you know, they let it happen. And I am like, Look, Jimmy's not going to eat dinner with you. I know you think Jimmy's going to eat dinner with you, but I promise you, it's not going to happen right? And they're like, Yeah, whatever. That's not. and purposely I do. I stagger it. So the kids go to dinner or 15 minutes early so I can kind of get them through the food line and get them all settled so that the parents can walk in and be like, Well, how'd you get a cheeseburger? You're eating a cheeseburger. I'm just like, you know, so don't hover parents. it can be an intense experience for parents, seriously, because it's a lot of independence. you know, I think they leave and they're just like they kind of see the light like, okay, I get it. I know. there's light potentially at the end of the tunnel. I've met some people who have gone through what I'm going through. My kid has made some friends. I mean, we do a a social the last night for the kids. And we get a DJ, we get karaoke for years parents would beg me to come to it. I'm like, No, you can't. This is a kid social. finally one year I was like, All right, this is the deal. You can go up on the balcony for 5 minutes at a time. You cannot call your kid's name, but you can watch for 5 minutes. And I mean, their kids are dancing. Their kids are singing karaoke and they're the parents are just bawling. They're like, we don't ever have this opportunity. And I can't believe our kids on the dance floor, you know, or singing karaoke. And, It's cool to let them see that, sometimes, you know, you're just not going to believe it without seeing it. it's quite an experience for sure. It's interesting to everything you're saying. I'm soaking in and I'm just thinking about the constructs we set up for our young people with disabilities. You know, you need the support in school. So a lot of times you have a teaching assistant or a 1 to 1 support, makes them dependent on someone else. Instead of building independence. And I think parents do that accidentally. And I think that parents forget from basically from 11 on, if your kid wants to hang out with you, you're lucky and a group. And it doesn't matter if you have a disability or not. It's beautiful that they are finally having an opportunity to make friends without an adult hovering over them. And I hope I mean, do you see when you see that experience there, do you see those parents taking that as a learning experience and hopefully trying to foster that when they get back home? Yeah, I think so. First learned helplessness is a real thing for everybody, right? So like, if someone's going to do something for me, especially if I don't really want to do it, I'm not going to change my behavior, right? I don't like making myself a sandwich. If my wife was going to make me a sandwich every day, I'd be like, Heck yeah, do it now. That's not a disability thing. That's just a human nature thing, Yeah, I think for parents, I think what I've learned is so I had a mom call me one time and they came to their first summit and the mom called me and she's like, you know, I just want to I just wanted to say we had a great time at the summit. But, Emily just not being self-determined. and I kind of in my head laughs. I'm like, Look, this isn't a magic pill. You don't come here for three days and boom, you're going to start being self-determined, right? You're you're getting exposed it. And I think for most kids and parents, like three years in a row is like the sweet spot. I think it's the first year it's so overwhelming, especially for parents that you've got so much in your head. And I try to tell them, leave here and try one thing, Don't go home and give your kid a chore list and make them cook dinner and you know, and like. Right, because their heads are going to spin, Try one thing and then come back. think that after at least two years, especially if they stay involved with the parent group, the idea of learned helplessness. They grasp it. But I will tell you this, if your kid is 15 understands learned helplessness and has not done a certain task for 15 years that's non-preferred, and all of a sudden you're trying to make them do it, or her do, it's going to take a while and it's not going to be fun, right? I mean, that's a real saying that, but doesn't mean you shouldn't try it. And I think sometimes we get like the whole, paraprofessional one on one support thing. I think we just need to be really careful. And I talk to parents a lot about and teachers. What does scaffolded support look like, how do we promote independence and failures? Not a bad word. I would rather give a kid too much independence, fail at something, reassess, try again with a little more support than give too much support in the beginning to where we never take it away because we're getting the expected outcome I mean, I struggle with that today with my own kids. You know, one just got our license and one is currently I'm teaching her how to drive. And so it's a constant battle. You're not just I've been talking self-determination for 25 years. I still have to think about it sometimes in the context of my own children and what this is going to look like today. It's just a journey. And it doesn't end when school's out, I've been around long enough that some of my original youth leaders are married. They're almost 40. They have jobs. they say, like self-determination is a thing I practice every day. And disability doesn't disappear just because you graduate high school or college it's still there. You might have learned how to use accommodations, focus on your strengths, but it's still a struggle. And I've got tools to overcome barriers. But, at the end of the day, I still have autism and I've got to work on certain things and for whatever reason, a lot of our kids came to us with This idea of disability is only a school thing, and when I get done with school, I'm not going to have it anymore. And it was kind of like, Huh, where does that come from? We got to figure that out a little bit. That's how. Have you ever tapped into figuring out why they feel that way? I think that because it's often associated with where they're experiencing the most failure. if you constantly go to the place and fail, you're going to think that when I get out of that place, I'm not going to experience all that failure. I've had a difficult time really pinpointing outside of they all experience a lot of fear of failure at an early age in school really think that's it. but yeah, it's interesting. It's been an interesting phenomenon. The other interesting thing, I just I just want to touch back on that you talked about briefly is those supports in the scaffolding of support. I think that when doing the IEPs have to be very intentional to say that it's okay if something happens. I want this independence, especially the 1 to 1 support, they don't make a lot of money. They're not trained properly. They feel like their job is just to keep the students safe. And so they they hover. And this poor kid is is stripped of any chance of not just independence, but of making friends because. No, you know, middle schooler or high schooler wants to hang out with the grown up. But the kid who's hanging out with the grown up all the time. I mean, how do you help students and parents with an IEP to make that sort of thing clear? Honestly, with parents, I haven't talked to other parents that are I mean, the whole idea of a one on one support outside of a kid with some significant medical needs. I mean, there's just a lot of research in this does more harm than good. And so I direct them to and they can hear me say it, but I don't have a kid who had one on one supports right now. I have, you know, parents who have gone through that and and kind of talk them through it. And, you know, for the most part, they get their and then we also train paraprofessionals we just trained 300 paraprofessionals for our school division. Right. Because you're exactly right. They think their job is to protect the kid or prevent failure. Right. And when you do that, what are we actually doing that that's not that's not really your job. special ed teachers sometimes. And I as a former or current special ed teacher, former high school special education teacher, sometimes we're worst. Sometimes we're trying to prevent failure so much. My first couple of years teaching, all I was trying to do was prevent any failure because. They've experienced so much already. problem is I'm putting this bubble around them and then they leave and then the bubbles gone right and they fail and they don't know what to do. sometimes special ed teachers are the worst. And honestly, sometimes that starts in pre-K in elementary school. Oh, this kid's really cute. I'm going to do all this stuff for them because. And they think they're being helpful, but they're not. And then you got learned helplessness, right? And that that creeps in so early. So a lot of what I like to do is talk to parents of young children because it is so much easier, you know, so much easier. You know, when I started this project, my personal focus was high school and you can get there, but it is a lot of work. But if you can start this young and get parents on board young and teachers on board young man, it is just so much easier. So, John, with that, I'm curious, what's your vision? take, all the roadblocks out of it? Like, what would your vision be for? I'm determined. Would it start in pre-K? would it expand nationally? Like, what is your lottery winning vision for what I'm determined could be? Yeah. So the two things, one, we just we just expanded into early childhood a year ago because it just it just makes sense. you can build choices into early childhood, just like you can build it into third grade, eighth grade and grade. The second side of that is I'm determined is great and it's cool. And we got a cool logo. But the core of our work, Honestly, we were we're not a curriculum for a reason. And the core of our work is changing teacher practices, changing parent practices. And if I could get people to understand that it is the every day opportunities it is if you're a teacher, it is how you engage your class. So if you if you asked a question to the class and you're only your your procedure is whoever raises their hand, that's who you call on the fastest processors raise their hands. They always get called on. You're not going to build confidence or competence in a kid who never gets asked a question and gets a chance to answer it correctly. Right. So change your everyday practices. Give kids a piece of paper, say write down your answer. Nobody talk, give wait time. When you say go, everyone holds their whiteboard or piece of paper. You see what everyone answered. You can give specific feedback to every many kids you want, It doesn't have to be this epic thing of of leading an IEP meeting of bringing 500 kids to campus for three days and running a summit. Those are all awesome. They work. But what really works are those everyday opportunities that we're not always doing in the classroom. And so if I could get people to just understand that and have an inclusive school, I don't I don't care if it's co teaching Pinocchio teaching, right. But if we look at post-school outcomes, if you grew up in a small town and you went to high school and you never saw kid with a disability and you went to college and you come back home and you open a business, When I walk in trying to get my friend with Down syndrome a job, what's chances you're going to hire them? The chance is zero, right? Because you have no exposure, you have no history. Now go back to you have an inclusive high school. You've got kids with autism walking around in classes with you, kids with Down's syndrome, whatever. Right. You've experienced that. You've grown up with it. They're a part of the community. Then you come back home, you open a business. What are the chances that you're going to hire that kid? I've done it. It goes up exponentially. Okay. But we can't you can't keep doing this isolated model and expecting that the data is going to change, Because it's not. I mean, we've got 30 years of that data, right? And so one community, one school at a time, understanding that that's what moves the needle for kids. And, you know, I've seen I've seen it happen and I've seen it happen. you know, that's how we do it. There'll be companies out there who are going to try to sell you a self-determination curriculum, and you're going to go to this workbook and there might be a good activity in there, but it's not what it's about, sometimes we overcomplicate it, and it doesn't have to cost any money. I mean, it's really just opportunities and opportunities and inclusive mindset cohesion between families and schools and community. if you do enough digging and you look for positive post-school outcomes, that's the equation right there. Think I have to stop myself from like standing up and giving you a standing ovation because that is just a it's so spot on and it's just baffling how we don't realize that yet in our society and that we're still kind of stuck in this cycle of what we're doing. We're almost out of time. I want to hear before we go, just one success story, or two or, whatever, sum up something that just makes you happy when you look back at all the work you've done. Yeah. So I'll tell you story of Daniela. She was at an elementary age. She was diagnosed with a learning disability. They stuck her in self-contained classes. She got to high school. She was still in that self-contained model and got exposed and determined and said, Well, want to go to college? Like I've seen kids with a learning disability who are in college. And she was significantly behind academically because been in self-contained K-8. She fights the counselor, she fights the school, she gets into the classes, she graduates, she gets accepted into a college, she makes it through college, she gets her master's degree, and she's now a lead teacher teaching in an elementary school in an inclusive model, working with students with autism. I mean, that's that's it, right? The sad part is that she's got to fight counselors and fight educators, To get access to it. Look, I can tell you ten of those exact same stories. We've got another student, Ben, on the autism spectrum. His parents tell the story of he woke up one day and he's 16 and going to be out of the house in two years. And they're like, this kid can't cook, this kid can't do laundry. We've been so focused on the every day survival that we have on any future planning. And Ben starts participating in on determined, learns how to advocate, learns how to kind of take charge, learns how to set goals, decides he wants to his special interests. His military history, gets into college majors in history currently in grad school about to graduate. opportunities support along the way a group to pick them up when when he I you know for Ben in particular he had some significant social deficits like a roommate in college like there is a lot of work put into that and it still didn't go well. But we figured it out. And so this idea that you know, exposure, support setting the bar high, in life comes at you quick, You blink and your kids are 18. I mean, people told me that and I didn't believe them. And here I am with a 16 year old and a 17 year old. so life comes at you fast. Ain't that the truth? Yeah, my my baby is eight. Just baffles me. My baby where I can. I'll put all the stuff in the description so people can go to links. But just before we go, where can people find you in? But then also say someone's listening in Oregon and they want to know more. Where can they find out more about implementing this in their state? Yeah. So the easiest is just go to the on the Sherman website and then we have a contact page on there. You can find me directly or you can, email the project directly the Gmail is on the website. But again, you know, I've worked with close to 40 states. What we kind of do is we look at where whether your school, a school district or a State Department, where are you currently, where do you want to be? And then we kind of craft an individualized plan to make that happen, right? Because there's a lot of different routes to go for self-determination. And so what what specifically what does your data look like? What are you trying to do? And so we have those conversations and we go from there. you know, besides just the website alone, everything's free, everything's downloadable.  look at it and you're good to go, just take our stuff and go and we just ask that, hey, tell us your story so we can highlight you. Amazing. John, thank you so much. I already have ideas for having you on again and talking about more things. I it's been just fantastic having you. I appreciate the opportunity. Thank you. and thank you listeners for joining us. We're just getting started with this podcast and can't wait to bring you more. Please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.  

There is no crystal ball to give us insight into what parenting a child with a disability is like. But conversations with Lisa Richard sure come close.    Lisa is a mother to seven children ranging from ages 18 to 30. Two of her kids have Down syndrome.    Lisa's honesty and insight is refreshing. She is the first to affirm how hard the early years are and will NEVER tell you that you'll miss those days. She's seen first hand that while early intervention and therapy are important for our children, it only does so much. It's OK to do less, to slow down, to just take a moment to take the caregiver hat off and be a mom.    Almost every parent I've talked to who has a child with a disability says that they are a better person because of their child. Lisa is no exception. She also sees how that experience has shaped the lives of her other children in amazing ways. And she shares how her children's disabilities are making her better at her newest role as a grandmother!   This interview with Lisa is our Mothers Day gift to you.    The Odyssey: Parenting. Caregiving. Disability.    The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  https://centerforfamilyinvolvementblog.org/family-to-family-network/   TRANSCRIPT:  Speaker 1 (00:00:07): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. Speaker 1 (00:00:19): The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis was a shock. I had some idea of what motherhood would be like, but parenting a child with a disability, not a clue. It put my life on a completely different trajectory. Working with the Center for Family Involvement at VCUs, partnership for people with disabilities, we provide children and adults with disabilities and their families with emotional and informational support. Instead of returning to a newsroom, I now utilize my journalism skills to share stories about what it's like living with a disability in a society that has yet to accept, understand, and celebrate it. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, but we don't sugarcoat it for our Mother's Day special. I just had to talk to Lisa Richard. She is a mother to seven children. Two of them have Down Syndrome. Not only is she my colleague at the Center for Family Involvement, she is someone I have long looked up to. Most of her kids are adults now, and not once has she done the whole, you'll miss it someday bit. That is such a slap in the face for those of us struggling to just get through the day. Speaker 1 (00:01:45): Lisa, you are the absolute perfect person to have on for this Mother's Day special. Your perspectives really grounded me through some frantic times, and given that, I wanna start with you telling me and our listeners, if you could go back in time and sit with your younger self ahead of having your first child, what would you say? Speaker 2 (00:02:05): Well, first of all, Erin, thanks so much for having me. I'd really appreciate you inviting me on the podcast today. You know, it's such a significant question. I mean, the first thing I mean, is I would tell myself this journey is gonna turn out just to be more amazing than you ever imagined in ways that you never imagined. You're gonna have to learn a lot. You're gonna have to change your worldview on pretty much everything. But, uh, it's, it's gonna be okay. And it, it has been, it's been better than okay. I mean, my, my life now, um, despite it not turning out in any way that I thought it would is, is just really remarkable. And, and I owe a lot of that to the work that I get to do every day. And the children that I get to parent, Speaker 1 (00:02:54): I feel the same way. I, I can remember vividly when my son was born and we didn't know, and all of a sudden, you know, the Down Syndrome diagnosis was there and I was so worried, you know, I just was like combing through everything I could read, and I was devastated. But deep down, I knew it was gonna be okay. I just had to ask people around me to give me space to mourn and grieve and, and wrap my head around the fact that this is completely different and this child is gonna need me their entire life. I mean, you are kind of in that point. Um, can you tell us a little bit about your kids and how old they are and where you are in your life? Speaker 2 (00:03:39): Y you know, it was a very similar experience for me, Erin. I, I did not know. Um, Zoe is 30 years old now, and in a couple weeks she'll be 31. And so when she was born, she was our first child and she was the first gen child, uh, grandchild on both sides 30 years ago. This was considered to be a very traumatic event, and I'm not saying that might not still be for some people today, but back in the day, this was when the life expectancy was still 25 years old and children were not getting life saving surgeries that they needed when she was born. Um, my worldview and, and the one that I was brought up in was that, you know, your intellect is everything. Whatever you don't have in this world can be made up with trying hard and, and having smarts and, and really pursuing and achieving. Speaker 2 (00:04:33): And so to have a child that sort of instantly deflated that worldview was so overwhelming to me, I completely shut down and was pretty much shut down for about six months. And I mean, that's a whole story in and of itself. They sent a nurse home with me. They were very nervous for me, but I was asked if they wanted, if I wanted to put Zoe in an institution, um, wow. At that point. And, uh, we had decided no, but things got increasingly better as I just started to fall more and more in love with her. I mean, admittedly, I would go out in public and try and hide her because people would say things to me and had some very cool things said to me when she was just a small baby. Um, but as I realized that I was being put in a different situation, I just kept thinking about how can I look at this differently and how can I look at her differently? Speaker 2 (00:05:33): Anyway, I mean, that's a whole story in and of itself. And we've talked about, I ended up pursuing, uh, toys or us had just decided to start using children with disabilities. And I went to a place that said that they did modeling head shots like this, you know, cheesy place. We lived in Connecticut at the time, and you know, she was 18 months, and I just thought she was the cutest thing in the world, and I felt like the needed to recognize that our children were more alike than they were different. And they refused to take her headshot. They wouldn't do it. And we got into this big argument about it, and I just said, well, what would the process look like if we did do it? And they said, well, you know, they explained it. And I said, well, let's pretend she doesn't have a disability and do it anyway. Speaker 2 (00:06:17): And I said, it's their grandparents' money. Just spend her grandparents' money. What's, what are you hurting? Of course, literally within two days we had gotten a call from toys and she was in the first ever catalog that they did. And it was at the time. It was specifically for children with disabilities, but it was really groundbreaking at the time. And so that really started my advocacy in recognizing that if I spoke up and, and I was able to really possibly change a worldview that I felt like had been correct for a while. And I ended up, oddly enough, Erin, because I'm pretty much of an introvert, but I ended up with this group of women that I don't even know how it happened, but it was when I first recognized that if you were with people that were in similar situations, it could just quite possibly save you. Speaker 2 (00:07:09): And I, I don't say that, you know, lightly. I felt like it did. And there were three other women in this group that had just had babies with Down Syndrome. And so just to, we all had different experiences. Some were having heart surgery or looking for it because their hospital didn't offer it to babies with Down Syndrome. They were possibly just being monitored. But having and knowing people that were like me made all the difference after a lot of, um, for us thought and prayer, we ended up deciding to have another baby, and then we had a, a third child after Delaney. We thought possibly our family was complete at that point. And then we made the decision to adopt a baby with Down Syndrome. We heard about a baby in Connecticut that had been left at the hospital after his parents found out he had Down Syndrome. Speaker 2 (00:07:59): And, um, we had the good fortune to adopt Camden. But, you know, at this point, I don't want listeners to like think it was so rosy and exciting and like, I just loved being a mom to a kid with Down Syndrome so much. It, it was more about, um, just for me and for other people recognizing, gosh, their value and they're fun and their, but I was really nervous about it. I was terrified. In fact, in fact, every day I was like, why am why am I doing this? This was probably the most insane thing I've ever done because Zoe was relatively healthy and Tim had multiple health issues. And, um, he had a family that was very devastated. It was an open adoption. So I knew I was inviting like another family into our lives. Berkeley at the time was only eight months old, and so just even the thought of it, Zoe was only six and Delany was two and a half. Speaker 2 (00:08:58): And, and so bringing this other baby, and there's a picture of me with all four of them on my lap, , and I just look about as terrified and nervous as any human, um, ever. And so Cam seamlessly just like moved into our family. And then about, uh, three and a half years later, we found out we were expecting twins. So that was a real surprise. And, and then three years after that we had my daughter Sarah. So right now there's 12 years total between all seven. Zoe is 30, and then my youngest Sarah is 18, and she's just about to graduate high school. Speaker 1 (00:09:39): Wow. When you were speaking, I automatically had two questions, but I wanted to wait. One what? I can't imagine, what would someone say about a baby? I mean, my son has gotten looks and it just makes my blood boil. But what, you've mentioned someone saying something about Zoe as a baby. Speaker 2 (00:10:01): Oh, yeah. Well, again, because of the time 30 years ago, I had a woman approach me in a bathroom, uh, once at a restaurant. We had her, she said to me, um, that, uh, she hoped that if this were to happen to us again, we would make a different decision and not to have the baby. I just was like so shocked. I remember I didn't even say anything to her. I've never forgotten it and have gone through my head all the things that I would say to her now. But, you know, more or less, she just basically told me Zoe had zero value and no worth, and, and that I should, if possible, prevent it from happening the second time. That's Speaker 1 (00:10:44): Shocking though, because 30 years ago is still, I'm not great at math, Lisa, so, but tell me, nineteen ninety, ninety two, Speaker 2 (00:10:53): She was born Speaker 1 (00:10:54): 1992. I mean, for you and I, okay, it's 30 years, but that still feels pretty modern to me. Yeah, Speaker 2 (00:11:01): Right. No, I mean, yeah, we're not talking 1950s or sixties. Um, yeah, no, it was, and it even surprised me and people would just make comments under their breath, different things that they would say about her. I noticed it mostly in the first three months, but partially because I was listening. I mean, you know, after she was six months old, I didn't care, didn't listen, took her out, and was really proud of her and excited to kind of, you know, what, I almost treat as this new learning experience with her, like this opportunity. But I mean, I have grieved for her at all different stages of life. Mm-hmm. when her older siblings learned to drive, and I knew she never would, and they started to leave the house. And, um, I knew she wouldn't be leaving anytime soon when they started college. Um, just so many experiences that possibly some young adults get to experience with Down Syndrome, but Zoe did not and Kim did not. Speaker 2 (00:12:06): And so it's, it's an interesting thing how you feel like you're in a good place and then all of a sudden a life event will happen that makes you realize how different your situation is from everybody else. And sometimes it's a life event in your own family, and you're excited for that child to go and do and learn and drive and get their first job at 16 that, you know, all my kids did. And those weren't, you know, the similar experiences for Zoe and Kim. And so that sadness, you know, in the back of your mind, there's always that little bit of sadness that I don't know that I wish things would've been different, but I wish the world was different for them, that people were more accommodating and wanting to hire them. And all the things that, you know, the difficulties that we face with them since they've become teenagers, I mean, we're, we're in a really pretty good place now. Um, but that doesn't mean tomorrow I might be sad all over again. Speaker 1 (00:13:12): You and I have talked about this before and I think that most people listening who can relate to these situations, we do. We know those waves of grief. It, it's at the first diagnosis or another comorbidity, those dual diagnoses that we so often see with one disability or, I know I personally have a really hard time with my brother's son who's almost the same age as my son. And just seeing milestones and things that just will never be, it was harder earlier. Now it's easier, I guess. But it's interesting because when you mentioned finding space like a safe space with those friends who also had kids with Down syndrome, that's why I find myself gravitating towards friends that also have kids with disabilities because it's just such a different experience. It's a safe space for me where I know if we're hanging out with our kids and they do something that isn't, as you were saying, accepted by society, we can just not, we look at each other and we understand. Speaker 2 (00:14:20): So true, so, so true. I was recently at a wedding with Camden. He was standing in the back with his headphones on just rocking out, which I, you know, would typically let him do. But because we were at this function, I knew there were people videotaping. And I just got that sense of like, my gosh, instead of letting him be, I was like, how do I make this better? How do I fix this? Like this worry that I'm putting other people out, which I usually don't feel, but this event, you know, it was a wedding and um, I walked up to him and, and he just was, you know, singing and . I just was like, well, do I say something? Do I not say something? You know, I ended up kind of tapping him on the shoulder and told him he needed to be a little quieter. Speaker 2 (00:15:11): And you know, again, it's just like, because I could see everybody staring at him and I don't know, there's just so many different experiences. I have a million of 'em. Some have been really interesting ones and some I would laugh off now, but it's been a real journey with the both of them. It's not easy, but I'm a better person. I'm grateful every day for what I've learned for the people I've met. I've just met all kinds of people I would've never known, just been involved in things I would've never been involved in. I mean, it's, it's truly been life changing, but, but it's been hard. Speaker 1 (00:15:45): Yeah. And I wanna, I wanna dive into that a little bit because like I mentioned in our intro, you so often remind me and where we work, everyone has a loved one with a disability. You remind the parents who have younger kids, it gets easier. These years are hard. Don't feel like you need to look back on them as if they were great because they're so hard. So let's talk about those hards. I want to hear about the hards and also the loss of joy of parenting we get, because those societal expectations put on us as soon as our child's born, they enter early intervention, which is amazing, don't get me wrong, but in a lot of ways there's still this fix your kid mentality instead of Yeah. Instead of just letting them be. And you've often used the example of being able to see your oldest Zoe and then Cam, and how all the therapy in the world, it doesn't always matter. So I'd like to hear more about the hard and the societal expectations, but also how society makes us lose out on, on those joys. Speaker 2 (00:16:55): So you're absolutely right, Erin, because I, I mean, I feel like even now we're, we're very deficit focused on how to fix and you know, we benefited from early intervention. I, I think one of the greatest benefits for me was not necessarily any therapies that I received, but just that they came in and talked to me and gave me great parenting skills, like skills that I was able to use with all the rest of my children. This conversation that you're talking about. So like, if you take somebody that's super achievement oriented and is always really focused on doing the best and working hard, and, and so I, when I had Zoe and when I sort of overcame the trauma and the shock of that, I was like, wow, this is just gonna be the most adorable, smartest child with Down syndrome ever. You know, which of course I look back on that now and just sort of see the ridiculousness of that. Speaker 2 (00:17:53): But I mean, we did put Zoe into all types of therapies and she rode horses and I mean, we were just really, really busy and involved with her. And so you fast forward to when we adopt Camden, uh, I now have four children under the age of five poor cam, like, as far as like therapies, like they were so minimal what he, he did get early intervention, but no equine therapy, you know, you know, like all the different things we did with Zoe and there, I mean, it's just so many, anything that was available to her, like we signed her up, you know, I'm not saying I'm not glad I did that, but you're right, like this sort of loss of time of just enjoying my baby, like everything I did was focused on, I remember being a McDonald's and there was a baby drinking out of a straw. Speaker 2 (00:18:46): I don't know what it was drinking, cuz I don't know why baby should be drinking out of a straw McDonald's. But I walked over to this parrot and was like, so excuse me, how did you teach your baby how to drink out of a straw? And I remember her looking at me and she's like, I just stuck it in her mouth and she like drank. It wasn't until I had my second daughter Delaney and was able to put a straw in her mouth and she just drank that. I'm guessing for you too, like if it's your first baby, you don't really know how behind they actually are until you have a typical child and you're like, oh my gosh, they're walking their, they just kind of do things magically it looks like because all the effort that I put in. But so back to my original, you know, story where Kim received hardly any of the therapies, he, for lack of a better term, just is, is much more capable of doing things for himself. Speaker 2 (00:19:43): He's moving about the world. Like I'm thinking of all the therapies that we provided for her and the, and the minimal therapies that Camden got and yet his ability to navigate understand money, like all the things that we tried to get Zoe to do through these different therapies is just like far superior to her. It's, it's just so interesting to me and I feel like sometimes I lost time, you know, and I'm not anti therapy or anything, but I don't know that I would've been so focused as I was like using every minute to try and make sure that she was better or could do things differently or just always like trying to catch her up. I felt like when I was, I was trying to be parent this recognition now at 30 that she's one obviously not gonna catch up and why was I winning her to catch up? Speaker 2 (00:20:42): I mean, gosh, Zoe, everywhere we go, everybody knows her. Everybody loves her. She is most times in public selectively mute. And so we use a thumbs up, thumbs down kind of paddle. We use low tech for her to kind of say yes or no, talks up a storm at home, but we thought it was due to social anxiety and so, you know, we looked into that but it, she just won't speak in public. She is just loved for all that she contributes in whatever way she contributes. And this need for me to make her something different than what she was, that makes me sad. Like I wished many, many years ago I would've just stopped really pushing her to be something other than she was. It's, it's a really tough conversation Erin, because like I said, I'm not anti therapy and I'm not against making sure they have every opportunity cuz I've done that for all seven of my children. Speaker 2 (00:21:40): But certainly Cam had way less opportunity than Zoe and you know, they're just, they're gonna come with their talents and their strengths. I mean, if you would've told me who would've done better as just far as like as the way society judges, I would've told you Zoe, she was the first and she had every opportunity and we were able to throw everything at her and, and Cam was just like, did, was he fed today? Uh, did you know like, uh, what time's his bedtime is he dressed? Um, when was the last time we bathed him? You know, those types of questions when you have that many little kids, I mean, you know, you had a whole group under a certain age as well, Erin, and so like the questions, it's about keeping him alive and he just does so remarkably well. I mean even we are amazed what he's able to do. Speaker 2 (00:22:30): So it was a real sort of interesting experiment if you wanna call it that, that I never planned to have or never thought about. But just as the years went by, he just continued to surpass her and what he was able to do. It was just so interesting to me that, you know, would be the lesser amount of time and energy than we were able to give him. He still did so well. And then, and, and I've seen this in, in some of the other families where there have been parents that have said, you know what, we're just gonna provide the basic supports of the family because the child was the birth order of like the third or the fourth, like Camden and they just didn't have the time and the child did really well or the child did poorly. And the parents like, oh, if I'd only done, and I'm like, you know, I don't know, it might not have made as much of a difference as you thought. Speaker 2 (00:23:23): I feel like we have all this guilt around am I providing enough, like every day am I providing enough to make them the best that they can be? And it's not that we don't have those conversations around our typical children, but it's not like this burning question like, if I don't provide enough, they're not gonna be able to live on their own or do all these things that, you know, we would hope that maybe they would be able to access at some point. And, and how as a society we value independence so much. Like so important to go off somewhere live on your own and be this or that and, and why that's so important to us. Because in other cultures it isn't, family members never moved more than a house or two away. And so I even just like as a culture, I think in the states, we just tend to really value independence so highly and, and so Cam is very independent and Zoe is not. And so in our culture she's looked at not being able to do as much, but everywhere we go, she's the one that everybody talks to that everybody needs to. And it's not that they don't love Cam, but it's just remarkable what she's been able to do with what society would say is very limited abilities. It's just completely shifted the wagon with everything, especially in the disability. Speaker 1 (00:24:42): You really hit the nail on the head when you talk about culture. Lisa, I feel like Americans were so achievement focused, like what can you contribute? What can you do? And time and time again, I find myself overcoming my own ableism with my expectations. And I want things for Arlo that I'm not even sure that he cares about him reaching his full potential isn't the same as my hopes or expectations of him. And I think part of this is because of the whole inspiration porn that we're constantly fed where we're fawning over these stories of people with disabilities overcoming their disability. That happens I think within our own little disability bubbles, probably more so for parents than people with disabilities. So for example, when Arlo was born, you know, I kept looking, trying to learn about Down syndrome and then I saw these leaders in the Down Syndrome community and one of them is a really good friend of mine, David Egan, just an amazing speaker and he's spoken at the UN and done all of these things early on in my son's life. Speaker 1 (00:25:44): It was just like, okay, well if I do the speech therapy and I do the learning program and I do this, he's gonna be able to do all those things too. And I just hit a wall, I put the pressure on myself thinking Arlo's not speaking clearly at 12 because I didn't do enough or he's not reading yet because I didn't do these things enough, but I'm now seeing that it's not about me, it's about him. Like he just does not want to work on these things and some of these things are harder. And you know, I asked you about turning back time, but I look back at like all the therapies that I took him to, but then I also dragged his younger siblings to where I was stressed trying to like beat, you know, we lived in Northern Virginia at the time, so trying to beat the DC traffic to get to aquatics and speech therapy and then my two year old's naps were all messed up and I was killing myself trying to live up to expectations. Speaker 1 (00:26:50): And I think we as parents do each other this disservice by not just being honest and saying, you know, you meet one kid with Down syndrome, you meet one kid with Down syndrome, you meet one kid with autism, that's one kid with autism. And we're constantly putting the valedictorians of that community on these pedestals and it's, it, it sets unrealistic expectations, which we should celebrate these people. Sure. But that it's doing a disservice I think, to our children because we're putting pressure on them to do something that, that I don't not sure they care about. I don't know. I mean I think that's why your perspective is so valuable because you have this living example in your home of doing all the quote unquote right things and then just letting it be, I, I don't know, I, I wish that we could have more honest conversations and I think especially as mothers, any inadequacy of our children is automatically put on mothers either from ourselves or from society. Do you feel that sort of pressure as a mother or are you able to let it go at this point? Speaker 2 (00:28:07): There's sometimes that I do still feel it. My, my children all follow on Instagram, multiple families that have children with Down syndrome or they follow adults with Down syndrome. And, and usually these stories are remarkable. These either as children or young adults, they're modeling or doing really significant things as young adults or teenagers and my daughters, you know, bring to me in like, look at this and, and there'll always be this moment of like, oh my gosh, maybe I didn't put enough time into it or effort or maybe I wasn't just aware or just the many kind of rabbit holes that all fall into when I see those things, which I didn't have. Like you guys are kind of in a different situation because I, you know, I didn't have social media that I only had me and the few people that I knew. And then of course the really antiquated books that I read. Speaker 2 (00:29:04): So there was no real push. I mean I think mine was an internal just because of who I am. It's really unfortunate because I feel like part of why we do that is because it makes society more accepting of them. Like, wow, down Syndrome is cool because they really can do so much, you know, and is it as cool when they're not doing as much or they're doing something that's considered embarrassing or whatever. And there's this one young woman that my daughter follows and she's just such a beautiful girl and she's really trim and she's learned to drive a car and just like all these things. And I'm like, oh my goodness. But I mean, at the same time I I, I understand it and I realize that parents are possibly doing this because it does help. It's like your typical children, if you have a really bright child, schools really wanna help that child and wanna, you know, the smarter the whatever they are that people really kind of rally around that. Speaker 2 (00:30:09): And so I, I mean, I can understand why it happens, it's just unfortunate to some extent because in finally letting go of my expectations and Zoe and like you said, focusing on things that matter to her. Like what is really important to her because that's what she's good at. What she, what she, what's important to her is what she ends up being good at. Cuz that's what she'll focus on. She is a master crochet. We've tried to have her teach people how to crochet, but she's so fast you can't learn from her because she's just so fast and she makes all these really interesting patterns and colors and, but she loves creating. And so focusing on those things as opposed to like, do people understand her speech all the time? Is she learning to do the things that everybody else says she should be learning to do? Speaker 2 (00:30:56): And really focusing on her creative side and the cool things that she's able to do when she crochets. And the more interesting part is sometimes Erin she'll make these just like crocheted squares, right? So they, I mean it's a square, the interesting colors and she'll give them to people and I'm always like, oh my gosh, okay, she's given one of her squares away. The responses are so interesting to me. So first of all, everybody tries to make it into something. Oh, I'll use this as a pot holder or I'll use this surf or whatever. And then they're always so grateful. Like, I'm just amazed at how grateful and how fun those interactions are with Zoe because people are appreciative of her efforts. People don't normally just give things to people and, and they're always like, wow, that's so cool. Thank you for thinking of me. Speaker 2 (00:31:49): You know, it's just true. Like try and force 'em to do things that they don't wanna do and yet, gosh, their talents would be so much better used elsewhere in the ways that they wanna direct them. But as a parent it's just really hard to let go and it's really hard to let go, especially if you're in a school that's saying, we need 'em to do X, Y, Z or you're in a doctor's office, it says we'd really like 'em to be able to achieve this. I mean, it wasn't really until Zoe and Cam got outta school, which is its own sort of traumatic thing of transitioning into adulthood that I was able to let go and say, well what, what do, what do they want? Not like, what does everybody else want? What does a school want? What of all the therapists that they had at school want? And what is it that's really important to Zoe and Cam in looking at those things? And it, it's made a big difference for us. Well, Lisa, tell me a Speaker 1 (00:32:38): Little about that. As any parent knows, you blink and oh my God, they're 12. Yeah. And I, you know, now I know I'm gonna blink and my son's gonna be graduating from high school. Yeah. And we hear a lot about the transition cliff and I think we like to think it won't happen to us. So tell me a little B bit about that and kind of how you navigated it and how it's going because it's still going even though Zoe's 30 and Cam's 25, I assume. Speaker 2 (00:33:10): Yeah, it is. Um, it was, uh, it was really hard. And again, that was one of those periods of grieving again, because recognizing that the state we're in doesn't offer a lot of supports. Neither of them. They've been on the waiver wait list for years and still hadn't been able to access it. And I don't know that that would've even been that helpful at that point in time. What I missed was, and what they really missed was the structure of their everyday life because structure's important to them and it's important to a lot of people and they no longer had it. And Zoe didn't quite understand why she couldn't go back to school. I mean, she grasped that she had graduated, but it's kind of an abstract concept. And so, you know, she wanted to go back. She missed her friend, she missed the people, she missed the interaction. Speaker 2 (00:33:59): And um, and so grieving around that and what was I going to do for her now and how would I provide some sort of everyday stimulation for her? Like where would she go? Wasn't like she had really close friends, unfortunately that hadn't left to go on to school. I mean, there's lovely people in her life, but they live their lives and eventually they end up moving or marrying or, you know, over the course of many years since she's graduated, even those that are most well-intentioned move on to something else at some point. And so this has probably been the greatest challenge I feel is, is how to kind of help them create a meaningful life after they graduate high school because they're, there's nowhere to go. And that's been real tricky in saying all of that, focusing on the things that are important to them. Speaker 2 (00:34:55): I mean, I've really discovered some interesting talents that they have that I probably never would have. Kim is a master at editing videos and he is like the keeper of all of our get together a lot. I have kids all over the country now that have left to go to school and they're doing multiple things. And two of my children are married and anytime we're all together, which is as much as possible, Kim's taking videos and he's editing videos and photos and he puts them in our group chat and we have just all these like great memories because Cam has done these remarkable videos of all of us and used a really sophisticated sort of editing software to do it. My kids have all incorporated things that Zoe's made for them into their lives. They're on their refrigerators or hanging up in their rooms, or she's making like a small lap blanket for them. Speaker 2 (00:35:51): And they have that. And this crocheting that she does has really kind of been such a bright spot in all of our lives because she'll give them as gifts and at Christmas and different things. And we have been fortunate enough in our community that we have a nonprofit that now does multiple things for young adults with disabilities. And so they're kept very busy in something that they are engaged in and love every day. And that has made a big difference. But I recognize so many families don't have that. We just were really fortunate where we live. Speaker 1 (00:36:27): Yeah, and I wanna touch on that too because, you know, you mentioned the waivers and I think something that no one realizes unless they're in it. I know that none of my extended family can even fathom what waivers mean and understanding like you're waiving your right to live in an institution, but there's so many funds out there. So the funds are for community-based living, but Virginia's wait list is, is it tens of thousands long? I mean it's, Speaker 2 (00:36:55): It's about almost 15,000 now. Speaker 1 (00:36:57): 15,000. And so, you know, I relocated from Virginia to a state where there is no waiting list and you can get a waiver, but it's interesting in any way, like us as parents and you as a person, Lisa, like the way that our children's disability will impact our lives forever. I know for my husband and I, I'm not sure we'll ever leave the state that we're in because of what my son gets to that waiver that he absolutely needs because, you know, he is not gonna be able to function in our society the way that everybody else can. So he needs those supports in place that provides for personal care, attendance and support staff and medical care. And so how has this impacted you and your life and how you're handling your future and the dreams that you had for yourself as you grow older? I, I think that it transforms from the time that they're born. And so it feels like it's a given, you know, by the time you're where we are, I know I will probably never live in Europe or wherever, like I'm here , whereas before I might have like retired to Costa Rica or wherever. Yeah. You know what I mean? Right. Speaker 2 (00:38:17): Yeah. No, Speaker 1 (00:38:19): We talk so much about our kids because there are everything and we're mothers. Yeah. But what about you? What about your dreams and how those have changed and how you're finding joy in your dreams, the way Speaker 2 (00:38:34): That they've been modified? Oh, it's such a great question Erin, because I'm really adventurous person and I love to travel. And so there have been many times where I've just thought about, this is a horrible word to use, but I feel trapped somehow in the state of Virginia. So Camden has gotten the waiver now and Zoe's on a medical waiver. And the thought of leaving the resources that we do have now is just really scary. And I'm not saying we couldn't move to another state and access a different waiver set, um, but these are the resources. I know we waited a really, really long time to get them. I have friends that are empty nesters now that have sold their homes and moved to other places that were sunnier or near a beach or on a lake and, and I am just like, you know, again, that was, I don't wanna say I grieved, but just that realization that, uh, that would probably not be mean. Speaker 2 (00:39:36): That we are gonna stay where we're at. I mean, certainly we could move where we wanted in Virginia, but even that gets interesting because different parts of the state access resources in different ways and you know, is that a good place to go? Is that actually gonna work? Like you get nervous about leaving because you know what you have here and is it gonna be better or worse? And especially as they get older, and Zoe and Kim have learned to love where they're at and they have people that they love here. So it's, it's an interesting question. I look at it differently now, you know, as I've gotten older, I'm in my mid fifties now, and you start to appreciate things in a different way. Mm-hmm. those things that were super important to me about leaving or doing or going have sort of transformed into, do I have peace in my life? Speaker 2 (00:40:31): You know, are there good people in my life? Um, I able to see my children as much as possible. Those things have become almost more important to me now. You know, I always say I wanna, and of course I can say this to you because you'd understand, I always like, I would love to live one day longer than Zoe, you know? Yeah. Um, one day longer than Cam, just to make sure that they're okay. And that's probably not gonna happen. I, I value different things that I valued maybe 20 years ago or even 10 years ago. I am more content, I think with less the adventure side of me will always wanna go and do. And, and that maybe will be a loss for me. But again, I feel like I've gained so much more. I've learned so much and just been so privileged. I feel in different ways. Speaker 2 (00:41:24): In some ways it's been really, really hard. But, you know, cam, when he was little, he ran away all the time. He had a little issues. I thought I would never live through it. We had the police called on us, he, he hit in a hot van. A neighbor called the police on us and we were threatened to be taken to jail. And, uh, we live on a creek and I thought maybe he was in the creek. I mean, I just can't even tell you the times where I was hysterically upset, traumatized by our lives just because of their disability and how it manifested itself. Zoe was not a runner, but Cameron ran all the time and we didn't even know where he was going. I don't even Cam knew where he, he had away from school once and was two miles up the road on, on an, an interstate. Speaker 2 (00:42:12): And the police department found him down running down the road. I mean, there's just been so many times that this has been so, so hard. I mean, it's still really, really hard. I mean, there are days that are really, really hard, but that's kind of what I'm saying. Like having some peace and knowing they're happy and good and my other children are happy and good. Those are one of the things that are most important to me now. Not that I still don't hope to travel and do all those fun things, but it's just changed a little for me. I think Speaker 1 (00:42:42): Lisa, everything you've said is just so powerful and spot on and I just find myself clinging too when you said you wanna live one day longer than Zoe and one day longer than Cam. And I'm having a hard time keeping my composure. I don't think I've ever heard you put it that way before. Um, and that's a lot for us to live with as parents because I don't think you're alone in that. I know that you're not alone. It's something we hear repeated over and over by our peers, uh, by fellow parents that are in similar circumstances. Speaker 2 (00:43:23): That's right. I mean, am I right? Like that's it one day longer. That's all I wanna do. So I do, I do think about it a lot. You know, how long I'll live, but I'm like, well if I could live to 84, you know, then Zoe would be six. Maybe she'd be okay and may maybe I'd know that she was already, but you know, I don't know that any age will be enough for me, Erin, that I'll be comfortable leaving Zoe and Cam because in some ways it's like leaving children behind. Um, you know, and I don't mean to insult them in any way by calling them children, but because they're always gonna have to have people look after them. It's, it's hard and it's sad and Speaker 1 (00:44:05): It's this interesting thing where, um, it comes up constantly with us. This is part of why I gravitate to friends who are in it because this is something that most people, you don't have to think about every day. Yeah, of course. It's a fear as a parent, we have to outlive our kids. We want to, because we know that the supports aren't necessarily there. I mean, it's just something that, that was one of the first things I read about life expectancy and Down syndrome. And I know a lot of parents with children with different disabilities, the life expectancy is lower, but you know, there's still that cusp of like, will I outlive my kid? And the devastation of that, will they understand losing a parent? I mean, this is just this unspoken horror that we have in the back of our minds all the time. Speaker 2 (00:45:07): Yeah. Speaker 1 (00:45:08): Um, and I think we need to talk about it more. And I hope that by building community and being open with these things, maybe we can help each other in that or help fix some of the errors or flaws in our systems. So this doesn't have to weigh so heavily on parents like us. It is such a struggle. You know, our children require a lot of care and a lot of assistance in activities of daily living as we call ADLs. Right. But we have friends, we have colleagues who it is total care Yeah. Whose backs are going out because their children are becoming older and like they need lifting. And it, I mean, where do we find help for this? Because community-based living should not heal the parents. Like I, like I I I wonder how we change this. Speaker 2 (00:46:12): Uh, I don't know, Erin. I mean I, I feel like we're so fortunate cuz we're in such a strong community of colleagues and friends and people that know some of our struggles. But at the same time, you know, I was talking to my a adult daughter the other day and she's in the past said that she is really, really comfortable with taking either Zoe or Kim or both if we're unable to get them into a situation where they're able to live even semi independently. And this past weekend, she doesn't even know this, this past weekend she came in and she was talking about how she was saying about living in Tennessee cuz they wanted to buy land. And I, unbeknownst to her, instantly panicked because I'm like, well that means the loss of their waivers and then that means you're no longer a viable option to me. Speaker 2 (00:47:10): Like it became this really weird conversation in my head that I would never have otherwise. And I didn't say anything to her nor would I because I would don't wanna change her life trajectory. But it, it really scared me and all of a sudden pulled out a support that I was just like sort of banking on and thinking about. And I don't know what the answer is, Erin. I don't know that there is, it's just a lot of trust and hope and systems maybe will get better. And you know, you've asked me many times about, and I'll try and say this without getting emotional, you know, when I look back when the kids were little, I was completely overwhelmed. Cam was running away, the twins were running everywhere. Um, I was trying to figure out how to help Zoe with different things and, and, and then trying to fulfill the needs of all my typical children and all that they wanted to do. Speaker 2 (00:48:14): And I have adamantly, as you know, said, I will never look back on this time and say, oh, I wish I could go back to this because I would've so many people come up to me and say, these are the best times. I'm like, really? I haven't showered in three days. I haven't slept in probably years. Um, I mean literally went through years where I probably never got more than three hours of sleep at night. And so now that I'm on the other side of that, that's super intense caregiving. I don't miss it. It was, it was a lot. And I was lucky to live through it. Quite honestly, what I miss her is thinking that I had time and I realized my, my time is getting shorter. That's what I miss. I miss more time to figure this out. Like how do I figure all this out? Speaker 2 (00:49:05): How do I, how do I make it work for them so that they're happy and loved and my typical children are able to enjoy them as siblings and not as possibly people that I need them to take because I don't know where else for them to go or how to set this up. I mean, there's just so many questions that I still have and there's, you know, there's lots of great programs and there's circles and all those things that we're supposed to look at and like in the inner circle, in the outer circle and who are the people you trust and, and all that stuff. And yet one day your child can say, oh, you know what I'm thinking about living in a different state. And then it completely changes what you thought was gonna happen. And so I don't miss every day like being so overwhelmed and traumatized by like my many caregiving tasks, but I do miss feeling like I had more time to manage what would be coming in the future. And now, I mean, my youngest isn't even for college this year, and so it's just gonna be myself and Zoe and Cam. So I'm hoping that now I can really put some efforts into figuring this all out. Speaker 1 (00:50:21): It's funny when you say that, Lisa, like I'm going from being emotional to being mad as hell because there are easy answers for, for this, which are changing our policies on a state and federal level. Why can't these waivers cross borders? There are so many roadblocks that are systematically in place when you have a disability. I just think about the advocacy that I wish I could do. But then I realized that just last week, our friends in the Down syndrome community, they had an advocacy day on Capitol Hill in DC and one of the things that they're fighting for is to stop organ transplant discrimination. Yeah. Because some states still don't allow someone with Down syndrome to get a life-saving organ transplant because they don't believe their quality of life is worthy enough of having their life saved. And so when I think about something as simple as let's fix our waiver system so our adult children can live as independently as possible, and if someone wants to move to a different state for whatever reason, they can still have the supports in place. We still have to fight for surgeries that save your life. I can't even imagine like, how are we gonna convince Congress to do that? There are only so many hours in the day and I just get so mad that, that the ableism in our, our world is just so blatant, but yet no one cares to change it. It's infuriating. Speaker 2 (00:52:04): You know, Erin , I mean you think about Zoe being born 30 years ago and, and like I said, the life expectancy was 25 and it was because they weren't performing any surgeries and that 30 years later we're still fighting just for them to be recipients of organ transplants. It's, it is remarkable and it shows the little amount of progress that we have made. I, I'm amazed all the time in doing and taking camp places because I do try and, you know, Zoe and I are flying this coming week actually we leave on Wednesday, cam refuses to fly and I'm taking Zoe with me and worried about getting on the plane and how that's gonna work and I'm worried about going to another state and how that's gonna look when I, you know, get off the plane. And there's still, even though I'm not looking at, you know, accessing those physical needs as far as like wheelchairs and things like that, it's even, we went to a play the other day to see cats, you know, where we were sitting. Speaker 2 (00:53:12): It wasn't accessible to her to see the stage because she's so short. But we weren't really eligible for the accessible seating because she wasn't in a wheelchair. And so just like trying to navigate all these like little things that every day that I have to think about with her is just really a struggle. I definitely hear you. I mean, why, why can't I move to another state if I want to? Because I'm so afraid of leaving with the little resources that I have here and why can't my children go wherever and still be able to maybe have their siblings live with them because they have a waiver, but they can't, it just doesn't work that way. I mean it's just like you said, we're so far back that we're still fighting for organ transplant. How do we even get to policy to keep waivers so that they're, you know, um, working across state lines. Speaker 2 (00:54:02): So, and Tennessee is so different from Virginia. I mean it's completely different waiver system. It's not even similar. It's completely different. You do everything differently in Tennessee. This is the other thing about it too, Erin. It's not only that the waiver is different, it took me years to understand the waivers and how they work. Like now I would have to go to another state and not only do I lose the waiver now I've gotta learn an entire system and the mental energy to try and figure all of it out and who I need to know and where I need to go. And because there is no single entry point for anything in any of the states and like all the different places that I would have to try and figure things out. It's just, it's, it's so overwhelming sometimes that, you know, you're like, I'll just stay put. I'm just staying here, just gonna . I might have moved but I'm not gonna move. I'm just gonna sit right here in Virginia and uh, know what I know and I'm happy to know it. Speaker 1 (00:54:55): I can very much relate because I was in Virginia, my son actually did because of pregnancy complications, got the creme de la creme of waivers in Virginia. And the only way I would leave Virginia is to go to a state where I knew there wasn't a waiting list because unfortunately getting a waiver, which is necessary, it's like winning the lottery in some states. Yeah, Speaker 2 (00:55:21): It is here, but I Speaker 1 (00:55:22): It is in Virginia. Um, thankfully it's not here, but I mean I am still not up to understanding everything here. And I've been here five years now. Even the school's jargon is different and I'm still wrapping my head around it. And not only that, but establishing medical care in another state. Yeah. For a kiddo with complex medical needs. And then knowing that when you have down syndrome, if you live long enough, you will get Alzheimer's. That is literally does happen medical proof that that is what we're looking at. So, you know, you need to have established medical care wherever you're going and finding specialists that care. I mean, I went through five ENTs before I found a good one for my son. Took me like two to three years to find an E N T that cared about understanding down syndrome. It's exhausting. Speaker 2 (00:56:21): It is exhausting and is exhausting and I wish it were different thinking about Zoe and Kim and their medical care and then transitioning to adult medical care and all that comes with that because pediatricians don't necessarily even know enough about Down syndrome. And then having to move out of pediatric care into adult care, especially when there's complex needs involved and things that people don't understand and physicians don't understand. And then you're trying to educate the physician on what they need to be looking for. And especially, I live in a rural community, so when just the numbers are small, there's not a lot of people that are interested in educating themselves in all of Southwest Virginia. Neurology's an issue finding a neurologist. There's only a geneticist on the Tennessee line and at Carilion and Roanoke. And so we have no access to that. And really looking at those social determinants of health, had I known better, I would've made sure I'd planted myself in a place that I had access to a lot of things. Speaker 2 (00:57:27): Um, it's worked out because Zoe and Kim right now are medically stable and we can, we can take care of their care, but I I, I have a lot of friends that are in really tough situations in rural areas and they just don't have the means to get out and they're having to cross state lines and insurances aren't paying for this or that and they're on phones for hours fighting for different types of care just to keep their children alive. It's a story that a lot of people don't know about. And then friends that have children with really significant behaviors, there's not enough residential facilities. It's just, it's a lot. It's really a lot. And it's, and it just, and it keeps changing, you know, as you get older like, and they get older, what can you still handle mentally and physically as an adult because you tend to get more tired and sicker too as we age and come up with different things. And yet we're still managing the care for our adult children with disabilities and trying to figure out what's best for them. I talk to, as somebody that supports parents and families and caregivers, some of them are just in really, really tough situations, and it's heartbreaking for them and for their children and for siblings too that sometimes end up taking a really significant level of stress on because the parents no longer able to do it. Speaker 1 (00:58:47): Oh my gosh. Yeah. To the point of communities not being supportive, I live in an area that likes to think of itself as very inclusive and, and very aware of events. And when they talk about diversity, equity, inclusion, there's so much excitement there. But if you say, well, but we need to make sure that disability is included in that equity and inclusion. Speaker 2 (00:59:09): Yeah. Yeah. They're Speaker 1 (00:59:11): Like, oh, but we can't get to that yet. Literally, we'll basically say that, right? It's d e i, but not when it comes to disability. And I hear this conversation time and time again, and it again, it's infuriating, you know, recognizing the intersectionality if you include racism and then ableism. Holy cow. That is awful. Yeah. So we need to do something. This is so serious, and I'm feeling like angst inside me. I wanna, I wanna transition to siblings and maybe talk about some of the joy in what you see. Yeah. Because I, I could use a little joy right now. , um, uh, agreed. Very dark, which is important. But I mean, Lisa, I see with my kids this level of love with the siblings, with their brother. This level of, of not taking any crap just because he has Down syndrome. It's just this really unique, beautiful situation that I just love watching. Speaker 1 (01:00:08): Uh, it's also really hard too though, so I wanna hear about some of the joys that you see and maybe also give a little advice for us that have younger kids, because I know that for me, with that sibling dynamic, I know so often you, we say, oh, I don't give my kid the Down syndrome card. They have to do all the things, but I can't get my oldest to do chores. And so if Arlo won't do chores, then his younger brother and sister are gonna be like, well, Arlo didn't do it. So I'm not doing that today. So I wanna hear about some of the joys, but also maybe some ideas for helping with some of that equity within our own household. Speaker 2 (01:00:46): Yeah. So if we had a five hour podcast, I couldn't talk about all the joys, you know, like there's my gosh, you know, they love Zoe and Cam so much, Zoe and Cam love them so much. It's uh, it's just such a fun dynamic to watch them all get together and do things together. And there is like, kind of what you mentioned with Arlo, like zero excuse. Zoe's not helping, Zoe's not doing this. Cam's bothering me. Like nobody's sitting around in my house like, oh, cam Zo down syndrome, so I won't say this or that to them, you know, it's complete equal treatment for the most part as far as ribbing and having fun and teasing and being annoyed and, you know, seeing them grow up. They would ask me questions and, and this whole recognition of, you know, them being different and what that means, and we've had that conversation many times, but it has transformed into this fierce advocacy on their behalf and on other people's behalf. Speaker 2 (01:01:53): They just grew up with this sort of, um, entrenched sense of social justice because they would see Z cam maybe, you know, cam once got in school suspension for something that was really ridiculous and he had no reason to be forgetting is ss for that. And, and my kids, you know, going to the office and my youngest, we, we have this really unfortunate situation here in my town where the town track is not allowed to have wheels on it. Oh. Which includes wheelchairs. Okay. . So they won't allow it because, so they said no bikes, no strollers, no wheelchairs. Well if that's your, how you access your environment, like how do you go on the track with your family? Mm-hmm. and my daughter has stood up to her superintendent has stood up in meetings, and Zoe or Cam don't use a wheelchair, but it's just so infuriating to her. Speaker 2 (01:02:55): My daughter Berkeley, who's an artist, has started an accessible art camp that she does once a year. She gets a grant for and is able to teach all different types of art to all ability levels of children, typical and otherwise. And, and how she's really built this into something that she wants to continue to pursue. And my other daughter, and she has her master's degree now, and she has turned all her advocacy into like, how do we help people that are unable to help themselves, whatever that looks like, you know, and, um, works in domestic violence shelters and does all kinds of stuff. And so this social justice component that I could have maybe talked to them about it endlessly, they grew up like seeing how there were injustices against their siblings. And they learned to just recognize now instantly, no matter what that social injustice is, you know, whether it is racism or ableism or whatever, they're always like, that's wrong. Speaker 2 (01:04:04): How can we fix it? What do we need to do? How can I change it as a parent, my gosh. Like, I couldn't hope for anything better than them to be these amazing people that are trying to do amazing things in the world and help those that are unable to, for whatever reason, help themselves or are not in a situation to do so. And, and they're just so fun, you know, like they're so adult. Children are so fun and they're so great with Zoe and Cam, and we go to the beach and we just do all these like, fun things. And even when we're just at home, which is a lot of the time, because as you know, it's very hard to travel. And there's been many things we've been unable to do because of Zoe and Cam, for whatever reason, I went to Disney World once, it was, it was the place of torture for me. Speaker 2 (01:04:46): Zoe wouldn't walk, cam wouldn't get on a ride. And I'm like, this is supposed to be the most magical place on earth. It's turned into the worst place for me. And I would, I was thinking like, they're gonna love it. And like, you spent all this money and it was just like, and in the end, we, the three of us, I was left with Cam and Zoe because my typical kids were like running off the different rides and stuff. And the three of us all like silently agreed we would never return because it was just too hard. But it's been really amazing. Like the the sibling thing, the sibling dynamic has been something I never would've anticipated, never realized like what a gift that would've been. And you know, I always thought, well, maybe they're gonna be embarrassed, but my son is picking me up at the airport with Zoe next week and can't wait to show Zoe to all of his friends and out at college and is like planning on taking her to the pool and like all these great things. Speaker 2 (01:05:39): So I think that's gonna be something really fun that you see, Erin, I mean there's, the equity piece is interesting because they'll do the same thing to me. Like, well, if you're not gonna make Zoe do it, then why do I, they'll do that. They'll pull that stone on me as a adult, not the older adults, not the late 20 adults like that. 18, 21 year old adults will try and pull that stuff on me. And I'm like, well, you know what? Why don't you assist though? The two of you can do it together, that piece you're, you're gonna love. It's great. And it's, uh, it's been, yeah, it's too much for me. Hardly even, like, I just can't even believe how wonderful that has turned out. And I would've never guessed it. Speaker 1 (01:06:18): I love that you say that. I, it's interesting I have to share. My 10 year old said something, uh, he is so wise and he said, mom, you know, I wish that they would teach more about disability history in school because we're learning so much about race and things are getting better the more we learn about it. So maybe if we learn more about disabilities, people will be better to people with disabilities. It's like, yeah, thank you. Speaker 2 (01:06:45): Yeah. , I instead out of the mouth of babes, right? It's, uh, it is amazing and he'll just, I mean that, that beautiful spirit will just keep growing and doing amazing things because he's already learned this at 10. Most adults don't know this, Erin. He's learned it at 10 years old. And that'll just continue to just like grow in his sense of justice and, and helping. It's just, you'll just be so proud. I'm just so proud of all seven of my kids for all different kinds of reasons and, and the different paths they've chosen and, and all of them have been heavily influenced by Zoe and Camden and the families we've known and things that they've seen and learned just growing up with, with siblings that are considered different. It's been amazing and it's been really beneficial to Zoe and Kim as well. And, and I know that there are families and they're not siblings and so that's a different dynamic, but sometimes there's cousins or other family members. Speaker 2 (01:07:46): It's definitely been a gift for Zoe and Kim and it's been a, a gift for my other children. I mean, if you were to ask any of my children, even the 18 year old, they would've not chosen our family to be any other way despite all the things we couldn't do. And there were many, I have lots of friends that take really significant family hikes. I would've loved to have been a hiking family or a biking family and Zoe couldn't ride a bike and she wouldn't walk for long periods of time. She can actually walk for longer periods of time, she just won't walk for long. Mm-hmm. . And so those like fun outdoorsy things that I always thought we would do as a family we weren't able to do. I don't know, I just think we have so much joy in other ways that I just really try and focus on those things and, and they've never let me down. Like there's just so much other things that I've been grateful for that I've not really missed that stuff too much. Not anymore for sure. Speaker 1 (01:08:44): That's good to know. And that, that it just keeps getting better because yeah, there are some things you have to give up and some families more than others, but Speaker 2 (01:08:53): Yes, yes. Speaker 1 (01:08:54): You know, you talked about just how you're a better person and I know God, I don't even wanna know what kind of mother I would've been had it not been for Arlo. Does that make sense to you? Speaker 2 (01:09:06): Makes a lot of sense. Probably would've been, I don't know, , it's a sick for me, Erin. I mean I still, it's hard to fight your nature. I'm still achievement oriented. Mm-hmm. , I still have pushed my typical children, probably harder than they would've liked, but it's softened my edges for sure. And it made for allowances and things that I probably never would've thought of. I really was a, a much better parent in. And then also, you know, when I started recognizing that Zoe and Cam did better when I would allow them to focus in areas or strengths that they appreciated or loved, I was able to do the same for my other children as well. Why push 'em in one area when their strength is in this area when they love this? And so it, it's just really helped me be a much better parent. Speaker 1 (01:09:56): How did having Kim and Zoe impact your parenting in both positive ways, but in ways where you wish you could go back and do something differently? Speaker 2 (01:10:06): Well, I mean, Zoe and ha Kim, especially when they were younger, needed a lot of physical help in, you know, in different areas. You know, oftentimes, primarily in the bathroom. And there was just, one of the things I think I would've done differently is I just expected my children to help. I was just sort of like, this is our family dynamic and you have to help because you're a sibling. I think I maybe would've had more conversations around that and what that looks like and, and why it's important to help but also honor them. Maybe in times when they were uncomfortable helping in ways that maybe I asked. I don't know that they would've done things differently. You know, my youngest daughter, she, you know, recently had been on a trip with Zoe and had to assist her in the bathroom. We had a conversation around that because I was just like, well just go in and help her. I wasn't there. She was with my husband and I'm like, you have to go in and help her. And she's like, but mom. And I'm like, you know, you have zero options here and this is kinda what I'm saying. Or you have zero options so you gotta go in and help her. And I mean, I was thinking a lot about that afterwards Speaker 2 (01:11:13): Because I know sometimes as a parent, like I'll panic. I get so worried about Zoe that I sometimes, well almost like, I don't wanna say I throw the other kids under the bus, but I'm like, listen, your needs are secondary at this point. We have a child stuck in the bathroom, so you gotta get in there. And so she did. But we've had conversations around that and, and how maybe I could have handled that better. I've learned to be really good to be an apologetic mother and acknowledging there are many times I'm gonna do this wrong. And there are many times I've done it wrong and I'm very easy to say sorry to them sometimes we're both learning and I apologize, I shouldn't forced you, I should have talked to you about it. I should have prepared you since you were on a trip with daddy that this may come up to me. Speaker 2 (01:11:55): Things that sort of look, black and white aren't always black and white to siblings. And I feel like having better conversations around those types of things, some experiences that have been embarrassing to them, having better conversations. I mean, as they got older and became a little more short of themselves, but as teenagers, like Zoe had to say about wearing masks, she would go to school and put on a surgical mask. I don't even know where she got it. And then once she took one of Michael's masks from the farm and was wearing it and the kids were like, oh, Zoe's like doing this and that. And I'm like, so what? It's fine. And they're like, well what is she doing? And, and just like not acknowledging that maybe in high school it would be uncomfortable to have a sibling doing really sort of extreme different things and having more conversations around that. Speaker 2 (01:12:41): I think I would've done, my position has always been, this is your brother and sister and this is just the way it is. And it's, I've kind of always presented it that way and they've always accepted it that way. Like I said, I think I would've done things better in having better discussion about what might happen, how to handle it when it does happen, how to not feel bad or feel bad that you're embarrassed if things happen in high school. Cause they were all in high school together. Once Camden jumped over my son Wyatt, and ate the sandwich out of his , he did this crazy thing and Wyatt was like, what is happening right now? He was sitting at a table with all of his senior football friends and I mean, we're a big family so everybody knows us and not anybody cared, but it was still like, why was like, mom, you're not gonna believe what Camden did today. And, and I was like, oh, that's so funny. And he is like, yeah, it's funny, but like, so sometimes things that I thought were really funny and I thought it was really fun that Cam was like being inclusive and jumping in with all the football players and blah, blah, blah. Why? It was a little like, yeah, no, I get all that. But it was a little different experience for me. So Speaker 1 (01:13:50): I love this. I do find, yeah, there are some situations where it's an emergency and you have to put a lot on children because you have no, no other choice. Arlo runs off and I've had to like have them help for him, you know, and Speaker 2 (01:14:04): Yeah, we've had the police here and I've been, you guys go this way and you guys go this way only because, I mean, what am I gonna do? We have to try and find him. I mean, he was gone and I was terrified and I watched him all the time. I mean, he had his own one-on-one aid and he got away from the aid and ran down the interstate at the, at the school. So it gives you an idea of how tricky he actually was. I mean, how quickly he could disappear on you just like in a nanosecond. He just had really scary experiences where I've had to unfortunately project some of that fear onto my kids. Like, you go this way, you go this way, you go in the backyard, you walk down the creek and, and you know, and kids looking around at all of us being afraid, and I felt feel bad for that. You know, like that's an experience that they, they've had and they, and was their life, you know, it just was what it was. And, but that's what I'm saying. I think that I would definitely have better conversations around those types of experiences or I just expected them to do certain things. I would've talked to 'em about it. Speaker 1 (01:15:07): Yeah. Speaker 2 (01:15:08): Like , I'm really good apologizing mom. I do it a lot. Like, I'm sorry, I'm sorry if I said that, that that probably didn't come out the way I'm meant it. Speaker 1 (01:15:15): I find myself doing the same thing. I apologize a lot and I find my kids are younger, so I say, listen guys, grownups make plenty of mistakes too. Okay. I am so sorry I am human. You don't stop making mistakes just because you turn a certain age. So I hope that it helps teach them humanity. Lisa, before we go, you're a grandparent now, so how, how does your experience with all of your children impact being a grandparent? Speaker 2 (01:15:48): You know, it was really interesting when my daughter told me she was expecting a baby and they were real cute about it and surprised us with it. Her and her husband and I went through a really interesting experience when she was close to delivering that. I, and again, this is one of those things I didn't anticipate, so excited for my grandson. And, um, as she got closer and closer to delivering, I found myself physically like, oh my gosh, I've just never been sicker in that last month. And recognizing that I was kind of going back to my own first birth and all the trauma that was around it and you know, an emergency c-section. I mean, there were just so many things around that birth and I was so worried for her. It wasn't like I was reliving my trauma. I was just so worried for her. Speaker 2 (01:16:40): Would it go well? Would it like that? Just that whole experience was such a difficult one for me. And in every way hers was the opposite. I mean, it was just like this incredibly beautiful birthing experience with lovely people around. And her husband was super supportive, as was Michael. But you know, it was just a, a different outcome. And, but at the same time it was very liberating. You know, one of the things that we didn't talk about, I've had a couple of children that have ended up with some significant mental health challenges. And I think if I had not had Zoe and Cam, and these are my typical children, if I had not had Zoe and Cam, I just would've been like, oh my gosh, like, what is happening right now? How did this even happen to us? Or whatever. And I hope I wouldn't have been that way, but I, I don't know, you know, without the education that I have now with Zoe and Kim, I might have been that way. Speaker 2 (01:17:36): And just recognizing the beauty in, in differences in all of us and like how we think and look and act and those that are able-bodied and those that have disabilities and, and just like everybody is a contributor in some way, even just by living and being in the world. And, and so this level of expectation that I would've had possibly even for my grandchildren is gone. It's just like, yay. You know, we welcomed another beautiful person into the world and I'm just so happy about that. Whatever he's able to do or not able to do, what a gift that he's here. Just this whole life experience has changed me and just made me just so grateful for the recognition that we are all just contributors in our own way, whatever we're able to do. And, and taking that pressure off of him and just waiting to see how he grows up and what he does. And it's, it's just been wonderful. Speaker 1 (01:18:38): I mean, what else is there to say? This is the perfect way to end our rollercoaster of a conversation, isn't it? Speaker 2 (01:18:46): For sure. Erin, Speaker 1 (01:18:48): Lisa, thank you so much and I hope to have you on again. I feel like there's so much more we could touch on. Speaker 2 (01:18:53): You're welcome. Anytime, Erin, it's great to be here. Speaker 1 (01:19:01): And thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate, review and share and tell us what you want to hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.  

Every April 10th our social media feeds are flooded with throwback photos in honor of Siblings Day. It may seem like a stunt to keep us scrolling, but it's much more than that. In fact, there is an ongoing effort to get the United Nations to officially declare it "International Siblings Day."    Siblings Day hits differently when a brother or sister has a disability, especially one that comes with medical complexities. The dynamic looks nothing like the stereotypes we've come to know. In some houses, the big brother/sister role might be blurred. In others, a sibling might have to pitch in with caregiving.    Try as they may, although there is always more than enough love to go around, it's nearly impossible for parents to distribute their time and attention evenly.   That's why we're dedicating this episode to the siblings that we see go above and beyond every day. The young people joining us understand empathy and patience better than most adults.    Take a listen, you might learn something.    The Odyssey: Parenting. Caregiving. Disability.    The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  https://centerforfamilyinvolvementblog.org/family-to-family-network/         TRANSCRIPT Speaker 1 (00:07): Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis has taken my life on some unexpected and spectacular turns. (00:36): This wild ride has brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is. But we don't sugarcoat it. The challenges are many, most of them because our society has yet to fully accept or understand disability. You know who does seem to get it though? The siblings. That's what I've seen in my years of being a mother and a disability rights advocate. And I see it in my own house with my son's younger brother and sister. In fact, my 10 year old a Emil is the catalyst for the Siblings Day special. A Emil's understanding and empathy of the human condition is greater than most adults. I know (01:31): You may be aware of Siblings Day. It's observed in the United States on April 10th. And while a lot of us see it as sort of a social media stunt to post pictures, it's much more than that. Three US presidents have recognized the day, most recently, president Barack Obama in 2016. There is an ongoing effort to get the United Nations to officially declare an international siblings day. Now, when I think of Siblings Day, I think of the guests I have here today, Dean Rigdon, Neela Chatterjee, and a Emil Croyle-Sheire. All of these young people have a sibling, not just with a disability, but also with significant medical needs. I am so excited you're here. Welcome. Uh, I wanna say that I am sharing a mic, and so my son a Emil is a little fidgety, so if you hear a little background noise, that's it. I wanna start with each of you telling us a little bit about yourself, your age, your life, you know, maybe what grade you're in, what you love to do, share kind of your family dynamic for us. Dean, why don't we start with you since you're the oldest. Speaker 2 (02:38): Oh boy, I thought you'd say that. Well, I'm Dean. I'm a senior in high school right now. I enjoy, I guess Dungeons and Dragons. I enjoy, um, swimming. I enjoy writing too. I'm a writer, family dynamic. Oh boy. I mean, Penny's awesome. That's my sister. I also have a brother, so they're 14 and 12, both younger than me. I am the oldest. Um, we didn't have Penny until I was about four, so I do actually remember that. Um, Speaker 1 (03:10): Dean, can you just tell us, uh, I know Penny, I'm lucky. I wanted to have people here that I knew so I could kind of help with questions, so I know all of these kids well. So Penny is your sister and she has Down Syndrome and some other medical needs. Are you comfortable describing those? I mean, they're no one's business, but if you feel like you wanna give a little background, you can or you don't have to give any Speaker 2 (03:32): Yeah, I can. Uh, even just recently there's also been a lot of developments. So she has Down Syndrome, which she's had for, you know, her entire life. That's how that works. And then, uh, she's also had, was diagnosed with Type one diabetes three or four years back, so type one diabetes. Uh, and more recently also diagnosed with, uh, celiac and Alors Danlos, like connective tissue disorder. So a lot of stuff recently that we've been dealing with, so. Speaker 1 (03:59): Okay. And I wanna, we're gonna dive a little deeper into that in a bit, but I wanna go next to Neela. So just a refresher. So I wanna know a little bit about you, maybe what grade you're in, what age you are. Uh, if you could tell us about your new pup and your brother. And if you want your mom and dad, it'd be great. Speaker 3 (04:17): I'm Neela. I turned 11 about a week ago. I'm in fifth grade. And um, my brother is Oliver. He's 15 and he was born with cerebral palsy. So he uses a wheelchair. He can't walk. He uses an iPad to, um, communicate and talk. And he is chin fed. In, um, August we got a new dog named Rocket. He's a Bernadoodle and he's six months old. And some things I enjoy. I like climbing, I like, um, I like drawing and writing and I like swimming and stuff. Speaker 1 (05:03): Uh, next up I'm moving the microphone over to my son, a Emil, a Emil. Do you Speaker 4 (05:08): Remember the questions or do you want me to repeat them? Can you repeat them? So Emil, I want you to tell Speaker 1 (05:12): Folks how old you are, what grade you're in, the things that you like to do, and then describe, uh, maybe the family dynamic, your Speaker 4 (05:20): Brother, your sister, your dog. Uh, my name's am Emil. I'm 10 years old in fourth grade. Uh, my hobbies are swimming, reading, a lot of reading. Uh, my brother Arlo, he was, he was born with Down Syndrome. I, I was born at least two years after him. Arlo is usually dis kind of disgusting. He lick my face unannounced. Uh, it's a lot of random stuff and he repeats movies over and over again. I'm not sure what else to say about Arlo, but Speaker 1 (06:05): Can I push back on disgusting? Yeah, because I observe it. So I, I do see Arlo lick your face, but um, I also see you kind of like, have fun with them and laugh about it. So can you tell me more, a little bit about how close you and your brother are? Speaker 4 (06:20): Uh, Arlo I, uh, are basically probably the most close siblings. My sister hates me and Arlo, she hates her guts. But, uh, me and Arlo have a lot more fun. We agree on more stuff and because I, I don't know what to say, either he actually has guts or it's because he doesn't really understand movies that well. I get to watch a lot of horror movies and he laughs at me when I get scared. So it's, it's fun with him around with him. Speaker 1 (07:04): I'll just add to that. So Arlo has Down syndrome, but he also has, um, he's immunocompromised, so he has to have infusions at home to boost his, uh, antibodies. He has hearing aids, he has glasses. We see lots of specialists. It requires a lot of travel in a lot of patience from a meal. And in defense of the younger sister Maya, who's not here, Maya is eight and they are, yeah, they don't really take any prisoners, um, and do not put up with much. And uh, it's an interesting dynamic here. I wanna move forward Now, you know, Dean, you touched on something a moment ago and I'm really curious, you know, with you being the oldest in your family and you being four when Penny was born, can you remember how things changed? Can you remember the feeling in the house when, when that was all happening? Speaker 2 (07:55): Yeah, actually I can, she was born like four days before my birthday, so she's the 23rd and I'm the 27th. And so we're right. So I remember walking into the kitchen on like the 23rd and it was our friend from across the street that was there. And I, I remembered that feeling of like, why are you here in the morning? Like, my dad's always here making like pancakes or something. And so he was there and he was like, I get a glass of water. And I was like, wait, what are you doing? And so she was back in the hospital with like jaundice for my birthday. So, uh, yeah, she's been in the hospital a couple times on my birthday actually, which she's been back with jaundice. Um, and what's the lung thing? Um, Speaker 1 (08:37): Pneumonia. Speaker 2 (08:38): Pneumonia, yeah, pneumonia. So that was uh, kind of scary, but yeah, I do remember that. Yeah. Speaker 1 (08:45): And Dean, what's it been like being the oldest brother? Because your brother Toby, you said it so it's like you're each two years apart. What's it like in that dynamic? Do you feel like you're more responsible? Do you feel like you've lost any of your childhood because of the dynamics? I mean, I want you to be really honest here. Speaker 2 (09:05): I think definitely I'm the more responsible one for sure. I don't mind. Um, I kinda like it. It's uh, we still have fun. I still get to enjoy being, you know, a kid. I'm never gonna lose that for sure. But like, I guess me and Toby have always kind of had a, you know, we're the brothers kind of dynamic duo thing and Penny's always had different interests than us, so we certainly made her more. We, we've, she's been, she's done a lot of things that have been modeled after us, I guess. Speaker 1 (09:38): That's really cool. Nea, I'm gonna move on to you and I'm gonna ask this question. I, I wanna say like, I have the perspective of a parent I see in my own house with a meal and Maya like sometimes the expectations that I have to put on them, like the responsibilities because of their older brother's needs are a lot for a younger sibling. And so Mila, do you feel like you have to be put on the back burner when, when your brother's needs are many? Can you talk about that and how that feels and, and what you experience? Speaker 3 (10:09): Yeah. Um, I don't know. My brother needs like, so much like, um, he like, um, he's like a lot to take care of. He's so much work and my parents have to be like with him all the time. So that's kind of hard. Like I don't get a lot of time with them and like, I don't know. Yeah, like I feel like a lot of this stuff is about oie. Speaker 1 (10:39): Mm. Thank you Mila. I know that's a hard question. Um, and I can say as a parent that it's hard for us because we know that it's often not really fair. The amount of attention we have to give to one sibling as opposed to the other. And we wish it could be different. We really do. Mila, tell me if there's one thing in this world that you could change, if you could wave a magic wand, what would you change to make your life easier, your brother's life easier, your family's life? Easier. Speaker 3 (11:10): I would wish it was like, um, easier for him to actually do stuff with other kids cause um, and like get more like help with nurses and stuff cuz we don't have a lot of those and that's kind of hard cuz my parents have to do so much. Speaker 1 (11:28): Yeah, the nursing shortage and the medical staff shortage and that is a constant struggle and it's been made worse from the pandemic Dean, I know, you know, your sister's needs are many and I know because I've been with you that you've had to help monitor her blood sugar and do things. How does that feel for you? Is that a level of stress for you or do you just kind of go with the flow? What's that been like? Speaker 2 (11:51): I always go with the flow. That's kind of my personality. So I mean I, I definitely help Penny a lot. Like it's, it used to be like when she first got diabetes it would be hard for them to leave the house at all like ever. And so I definitely had to learn how to take care of her diabetes and how to, you know, take care of a lot of the issues that she has so that they could, you know, leave and go get groceries while my dad works or something like that. So now my mom feels a lot more free to go to meetings. Uh, there's a lot of stuff that, you know, she'll be able to leave me alone with Penny for sure now, but every time there's kind of a new diagnosis, there's a little bit of a period of learning. Speaker 1 (12:30): Absolutely. You know, Emil, I'm not even sure you remember a lot of the stuff with your brother. I'm gonna bring the mic back down since we're sharing, but I remember a, uh, a Christmas where Arlo had pneumonia and he was hospitalized because of his asthma and issues. Right. How do you feel Arlo's health issues impact your life? Speaker 4 (12:52): Honestly, it's hard. I feel like I've lost a lot of time because of Arlo. I've been, honestly, almost every month I have to go on this. I have to drive with my mom and Arlo and Maya and dad. My dad, uh, two hospitals in Boston, Syracuse we're basically all over the place. I mean, I enjoy being with Arlo and his personality because he has all his disabilities. His personality is different from a lot of people. Speaker 1 (13:39): Emil, you bring up something that I wanna ask actually. You know, you're talking about other people and being different. How different does your life feel Amil than those of your friends? Do you feel like your friends have a very different life because their siblings don't have a disability? Can you talk about what it feels like when you go to other kids' houses? Speaker 4 (14:02): It feels kind of weird to go to my friend's houses, uh, and hang out. But the reason is I go in there, they each, I mean everyone's unique. Every family is unique because of Arlo having a disability and world down syndrome day is so close. My teacher starts talking about it. And one of my friends when I didn't raise my hand and we were talking about down down syndrome, he told me to raise my hand and I don't, I don't blame him. I would've said that to him If his brother or sister, if he had a sister at a disability, I'd tell him to raise his hand too. But here's the thing, I feel, I feel kind of weird when people look at me in my school and think he probably knows everything about Down syndrome. I don't know everything and people kind of expect me to. Speaker 1 (15:00): That's interesting. Like you don't wanna be the expert on your brother's disability. Yeah. Is that what I'm hearing? I'm not a doctor. You're not a doctor. I mean, Mila, do you get that from people sometimes? Can you talk a little bit about how that feels? Speaker 3 (15:14): I don't get that a lot. Um, but sometimes I do. Just like Emil said, when people are like talking about my brother, they're like, oh, hey look, she has a brother with a big disability. Let's ask her about that. She probably knows all about that. Speaker 1 (15:31): That's interesting because there's uh, a very powerful expression in the disability community for people with disabilities, which is nothing about us without us because a lot of times people with disabilities are left out of the conversation. And I think what's interesting hearing from you and Dean, I can't wait to hear what you have to say as well, is that maybe as parents and then also teachers, the adults in your life, rather than asking your sibling or finding a way to communicate with your sibling who has difficulty communicating in a traditional way, they turn to you. I mean, what is, is that what you kind of get Neela? Speaker 3 (16:09): Yeah, sometimes. Speaker 1 (16:11): And is that frustrating? Speaker 3 (16:13): Yeah, , it's Speaker 1 (16:16): Dean, what's been your experience with all these things? Speaker 2 (16:18): Uh, well I know for you guys it's a little bit your, your siblings are older than you. So I, there's no like, I'm the first one in the grade to meet all the teachers. So they don't really, they don't have a previous experience even with, um, even with Toby. Like teachers will call him my name instead of, instead of Toby, they'll be like, oh, it's Dean. And then they'll realize that I'm in the high school already and Toby was in middle school. And so I think a lot of that is just like, it's your older sibling and they've been through that already. Like they've been through the grade, they know the teacher or they know or the grade, the teachers in the grade know them and then you kind of get a little bit of, oh, they must know a lot about this or they have some kind of, you're not a blank slate essentially. Speaker 1 (17:03): I feel like there's a little bit of pain with Mila and a Emil and I get that and I'm really glad you two are opening up and I wanna hear, I don't wanna jump away from that and jump away from things that are uncomfortable. So I wanna, I wanna just see if there's anything you wanna add about your experience that maybe I'm not touching on. Uh, and am Emil, I'm your mom so this might be uncomfortable, but what do you think your biggest frustrations are? Either in general or with your parents Speaker 4 (17:31): In general? Arlo actually only has, I'd say two best friends. And it feels kind of sad to me how he has to deal with some people when they exit the middle school. They look at him funny. Like I, I don't think my mom notices it, but uh, I definitely see people looking at Arlo. It, it makes me feel bad for him and I wish I could just change that. Like people would look at him with smiles and ask to be his friend. But I mean that's how our world is. But anyways, Speaker 1 (18:16): Emil, I'm glad you pointed that out because I see that every day and it breaks my heart and I've seen it for years because you know, all of the siblings we're talking about today have visible disabilities. And so I'm sure every single one of us has experienced those stares. Not of love, but of like curiosity but sometimes of like not coming from a nice place. You know. Dean, you're nodding. Can you share some of what you've experienced? Speaker 2 (18:44): Eighth grade girls are mean dude, eighth grade girls are mean. Um, I know it's really hard for Penny to kind of, she's very friendly and very open so I know she has a couple of very good friends. Um, and you know, they're wonderful people and I know they have a lot of fun together. But, um, I think sometimes parents don't hear everything that's kind of said or like, you know, cuz I'm closer to the age of all the people that Penny hangs out with and I know sometimes it's hard for a parent to kind of understand or to to have the kid be doing what they would normally do next to that. My siblings parent, right. Um, I see more, I feel like I see more than maybe my mom or my dad will. Speaker 1 (19:34): Dean, what do you mean by that? Like, have someone see like what, what are you seeing? Speaker 2 (19:39): Sometimes people think it's funny when Penny gets mad or something and they'll just do like little antagonistic things. Uh, Toby likes antagonizing her so he ends up doing a lot of, you know, he's the, he's a middle child and so , but you know, she, she's used to responding with a ah, don't do that. Um, or something like that. Just, you know, come on Toby. People think it's funny when she gets mad or something and so they'll do antagonistic things that get her in trouble and then it's not really her fault and I just, I don't know. I don't think that's fair. Speaker 1 (20:12): No, it's not. And I wonder, I mean do you share things with your parents or do you filter them to like save them from heartache? Speaker 2 (20:21): I don't think there's much they can do besides do what they're already doing. Like I think if I was gonna change something in the world as maybe to the previous question, it would just have everybody be educated on how stuff like this works and how disabilities, um, are just, you know, they should be accepted and be normal and you know, be part of your life. And so yeah, I wish everybody would just have a better empathy and understanding of people with disabilities. Speaker 1 (20:52): Absolutely. Mila, I mean what sort of things do you see in, in the circles that you're in in fifth grade? Speaker 3 (20:59): Sometimes when I'm out with my brother and my parents people or like when my brother's in school, sometimes people treat him, he's like doesn't know anything and stuff and sometimes like they just think he's not smart and he doesn't really have any friends. Cause people just, yeah, I just feel like everyone thinks he's really weird and they don't get it. Speaker 1 (21:31): Yeah, it's strange isn't it? And it's hard and I think I'm similar ages to all of your parents, right? So when we went to school, inclusion wasn't a thing. So, um, I say this a lot but I think it really drives home the point. Arla was the first person I ever met with Down Syndrome. And so in some ways I expect the looks from adults and, but I'm always surprised when the kids do it because I hope that their peers have been with them their whole lives. But from what you're saying, even though that's happening and they have known Penny and Oliver and Arlo their whole lives, they're still different. Is that in the eyes of their peers, they're still very different. Is that what you're seeing? Speaker 3 (22:21): Yeah, yeah, Speaker 1 (22:23): Yeah. You know, when we talk about name calling and we talk about diversity and equity and inclusion, I was just speaking to someone else yesterday who is a Chinese American and a woman who talks about all of the discrimination that she has faced in her life and said that none of it has stacked up to the ableism. She sees her daughter who also has Down syndrome face and I, I know in my work I see that as well when we talk about diversity and equity and inclusion, disabilities often not included in that. And so I'm curious and Dean, I'm gonna start with you on this one. When we talk about that work that you see that everyone talks about in school, there's a dis there's a free for all in discrimination still when it comes to disability. Do you see that at school? Speaker 2 (23:16): Um, yeah. I mean people really try not to say slurs generally. I mean obviously they should not say slurs. Um, it's derogatory and awful but when it comes to like the R word, people just casually throw it out there. It's a lot more casually used and I feel like it's just because there isn't as much publicity or you know, as much education on the subject. Like when I was in high school, when I was like a freshman, I would hear, especially the seniors, I think a lot of people in my grade, um, are very good about not using the R word. I don't hear it very often. Um, I know my school's smaller and so I know everybody in my grade it's a lot easier to kind of know them all personally. And they all know me pretty well so, you know, I've had conversations with a lot of them about it actually. And I've definitely put a stop to it in my grade. But like when I was a freshman it was hard to, I would not talk to the seniors about them saying it, of course in like the locker room and they're like throwing around horrible slurs and I didn't wanna say anything cuz they're going to, I don't know, gimme a swirly . Speaker 1 (24:24): Wait a minute. So I'm, I'm, I'm 45 now. Dean, I don't know if swirly exist. What's a swirly? Speaker 2 (24:30): Oh gosh. Oh I wasn't gonna really get a swirly but just like facing the toilet, Speaker 1 (24:36): Crush it. Okay, okay. I didn't know that was called a swirly. I mean that happened then, you know, but I don't know if it had a name. Okay, good to know. Thank you for the humor. We need a break for humor. Um, Mila, so I know this is a complex and it was certainly a long-winded question, but you know, as a fifth grader do you see that as well? Do you see like people easily making fun of kids with disabilities but not so much others? Speaker 3 (25:02): Yeah. Um, I only went to school with my brother for one year when he was in fifth grade and I was in kindergarten so I never really saw anything during that time. But when I'm like out with him, um, once when we were at the swim club, some kid walked up and asked him why does he look so weird? What's wrong with him? And so like that type of stuff. So that, that happens a lot cause like people never say really bad things but they can say like mean things. Speaker 1 (25:37): Do you think people even realize how mean it is? Speaker 3 (25:40): Some people do some, I think some are just like asking and others are trying to be me. Speaker 1 (25:48): Yeah. Which is unfortunate because we're all on this together, right? Neela, I wanna have a follow up question for you as a fifth grader, what about what you're learning in school about diversity, equity, inclusion? Do you, when you have those lessons, is disability included in that or not much? Speaker 3 (26:08): No, not really. It's just like black lives but they've never said anything about disabilities and Speaker 1 (26:15): Like And how does that make you feel? Speaker 3 (26:18): Like they have things like diversity but like in the pictures they just show different like black and white people and not people and like wheelchairs or with disabilities. Speaker 1 (26:30): That's interesting because we talk so much about representation mattering and I feel like if we really wanna make a change, we need to see right, everybody. A Emil you know, I know that you learn about diversity, equity, and inclusion in school. Do you feel like you talk about disability much? Speaker 4 (26:50): Uh, basically only one day. One day each year? Uh, it was only starting in third grade and honestly it wa I think it the only reason it happened and the only reason we actually did that was because my mom sent an email. So honestly I'm gonna swear here that it really pisses me off. Basically, if you really want to learn about this, I feel like you're gonna have to learn it out of school. You're gonna have to learn all everything you want to know that you don't learn in school outta school. And I feel like leading up to third grade, we never really talked about disabilities or anything. Speaker 1 (27:42): You know, I wanna move on to something. This has been really dark and I wanna move on to some joy. And so we're gonna kind of slowly transition, but I wonder. Um, and again, like I mentioned before, like I know because I was never around anyone with a disability until I was 33 and that is absolutely sad. And then my life changed because of my son in this beautiful way. It was hard because there was such a learning curve, but Arlo brought this love in my life. Arlo made me wanna have more kids and now I have three Arlo expanded my world. I would literally not be talking to you guys today if it weren't for my son. We wouldn't know each other. But we're connected through this thing that no one ever really hopes to have a disability. But it's not a bad thing, it's just part of the human condition. So I wanna ask this question in a positive way that because of your exposure, because your entire life you have been close to someone with a disability and you always will be and because of understanding it more, how do you feel it impacts your daily life? How do you feel like your sibling and your life experience impacts how you move through this world? Dean, let's start with you. Speaker 2 (29:00): I feel like I'm a lot kinder, um, just to everyone. It's given me a lot of empathy I think. And I see through, through things that we're learning at school maybe. And when you know the teachers like analyze this, what's going on here? And a lot of kids struggle maybe with, I don't know, what's the dynamic between, you know, these two groups of people. And I think you just get a different perspective and it's a lot easier to see uh, and understand people's differences in communication. Especially like penny communicates in non-verbal ways a lot of the time. Um, sometimes it's, you know, just flopping or doing something to get a response and you kind of have to think about why people are doing what they're doing to, you know, figure out you know, what they want. Speaker 1 (29:50): Mila, how's your experience with Oliver kind of shape your worldview? Speaker 3 (29:55): I feel like a lot of things that a lot of people take for granted, like being able to scratch your own itch or pull up your blanket. We like really appreciate those things cuz all he can't do any of that. Like, he can't like control anything he does. So I think we really appreciate those little things and having friends, like we can communicate to them and we can like make friends. He can't do that. So I think that's one of those that's positive. Speaker 1 (30:32): Emil, how is having Arlo shaped your worldview Speaker 4 (30:36): In good ways or bad Speaker 1 (30:37): Ways? In good ways? Speaker 4 (30:39): I'd say this kind of both, but we have to walk to pick Arlo out from school because he can't really, I mean he knows the pathway to to home, but we don't know if he's just gonna run a different direction. The good thing about that is every time I go to see Arlo, every time I go to pick up Arlo, he runs up to me and gives me the biggest hug and smile before my mom Speaker 1 (31:09): Am Emil can I ask a follow up question? Yeah, sure. Don't apologize and I'm sorry for cutting you off. Um, no worries. I, because I get to see you every day. There's this really beautiful dynamic between you and your brother where you are able to anticipate his needs and there's also, even though he's the big brother, I mean Arlo calls you big brother. Does that feel good the way that Arlo looks up to you? Can you, can you describe how it feels to have someone adore you so much? Speaker 4 (31:39): Baby? I'm not, I'm not really sure. I feel it feels kind of weird for my 12 year old brother to tell hi, to call me his little brother, big brother. It feels kind of weird, but it gives me this sense of pride, how Arlo trusts me and how he follows me. It makes me happy. Speaker 1 (32:05): I wanna touch on something because I've heard you all say it Dean, you mentioned Penny has friends, but all of you have mentioned, you know, difficulty with friendships and so I wanna ask, you could recommend to your peers how to cultivate a friendship and how important that is because I, as a parent, I say it with my home own son and it breaks my heart and I, I don't know how to make that happen. I keep trying but you all have this different perspective and you have perspective not just as a sibling but as someone who has people your own age who have, you know, different life experiences and disabilities and whatever. What advice would you give for cultivating friendships both to parents trying to do it, but also to your peers who should be having a friendship with whoever? Speaker 2 (32:54): I think just in order to cultivate a friendship you have to kind of let some stuff go. Uh, you don't have to hold everything they say against them. Nobody's gonna be perfect. Nobody's gonna be the ideal friend as long as they lift you up and you know, don't drag you down, then that's a good friend. Um, that's all you really need in a friendship. I think. Speaker 1 (33:16): Ah, god, a lot of adults need to hear that. Mila. Um, what perspective do you have there? Speaker 3 (33:23): Well, like for being friends with Ali, I think they should have, they should learn like, like how he communicates and be patient with him because it takes a long time for him to communicate with his iPad and like when he blinks yes with his eyes and shakes his head now when he says no and they should just like, I feel like one of the most important things is patience cause he can take a long time to um, communicate with other people. So I think that's probably the most important thing. Speaker 1 (33:59): Yeah, that's interesting you say that ne I do the same thing with my son for his I e P where I'm like, you gotta give him extra time to answer. You just have to allow for that space. Everyone in your life has to amil. What do you, what do you see from both yourself and your peers? How, how can we cultivate friendships? Speaker 4 (34:18): Uh, I agree with both Mila and Dean, but there are some things I would add. I realize that Arlo has this way of communicating. Sometimes she'll just, uh, sometimes he uses sign language, he uses all these different things to communicate and you just have to deal with them. He usually uses this, your middle finger and pointer finger, no ring finger, middle finger and point, uh, ring finger dam, pinky up, uh, index, uh, Speaker 1 (34:57): It's, it's a lot of people know this. Sign a Emil. I'm gonna interrupt and interject to make it easier. It's the American sign language sign for I love you. Speaker 4 (35:04): So it's basically you're doing loser, which is just this, and then you just add your pinky up. Speaker 1 (35:12): Yeah, Speaker 4 (35:14): He usually does that. And then he doesn't really use sign language that much, but it really depends on which, who, who you're talking about. That's how I, that's how I create a friendship with Arlo Mila. That's probably how you create a friendship with uh, Ali and Dean. That's probably how you create a friendship with Penny. You always have different ways because no one's exactly the same. Speaker 1 (35:42): Oh, well there's that spot on too, right? No one is the same. Everyone's different. I'm curious too, since you all are in school, and this is something that parents struggle with and a lot of parents are gonna be listening to this. Okay. Is that our, your siblings? My kids, our kids, they need assistance in school and um, a lot of times that comes with an adult person with them. I think in Oliver's case it's a nurse, it's a teaching assistant. It can be one-to-one. I'm curious how you all feel, not so much as siblings, but as kids that are in school, do you think that creates a barrier to cultivating those friendships? Because there's always an adult around this kid. So I'm, I'm gonna make this a two-parter because the one that adult I think creates a barrier for friendships. But also do you think that adult helps stop bullying? Is it a double edge sword where it's necessary or not necessary? I think this is something that adults struggle with and I would really love the opinion of you all as students. Dean, we're gonna start with you again. Speaker 2 (36:48): I am not in school with Penny in the same, the same building, but I know if the adult that is with her is like good at what they do and knows Penny really well, it's a lot easier to, um, you have to find the right person. I think it's not, it's not a clear answer, but like I'm sure the adult can be a barrier for her. I know Penny really likes a lot of her, you know, aids or teacher assistance or something like that. She, she really likes all those people. But sometimes she'll be like, yeah, I'm gonna invite my friend Ms. Emerson over and you know, it's hard cuz she kind of equates that with, you know, Ms. Emerson is my friend, but she is, but it's hard to explain that the person who's with you all day isn't exactly like, it's more of a professional relationship, uh, kind of side of relationships. So I think there's a little bit of confusion in there too, as well as with uh, you know, maybe a block to talking with other kids. Speaker 1 (37:48): That makes sense. And I know there's a lot of disability rights advocates. They really stress your staff is not your friend. That's not, and that's, it's important to get those friendships happening elsewhere, but it's, it's a really tough thing to do. Mila, I know you and Oliver are very far apart in school, so I, I mean, but you also have other students in your school who need support. I'm curious what you see with Oliver, but what do you also see in your own school with students who need that extra support? Speaker 3 (38:17): In my own school, there's not that many people in my grade with a disability or like in the school that I see a lot. Okay. There's um, one or two, I think they have like autism so it's not as bad, but it's still a big disability and they don't need an adult with them all the time. Like during, like when we have like PE or art or stuff, they can be on their own but sometimes like for class they need an adult with them and they need like special classes. So I think that sometimes can get in the way of us trying to like talk to him or make friends with him and with my brother, um, as like you said, I'm not in school with him, he's in 10th grade , so I don't know that much about him, but having a nurse at home with us, I think like having her around, it's sometimes hard to be close to him cuz she's just always there. I'm like, yeah, Speaker 1 (39:26): Yeah, it's, I I know that's weird. We've had that sort of presence all the time and they kind of become part of the family, but they're kind of not and it can be really uncomfortable, can't it? Speaker 3 (39:36): Yeah. Speaker 1 (39:37): Yeah. Speaker 3 (39:39): So Speaker 1 (39:40): A Emil talked about earlier needing to travel a lot and needing to do things because of siblings. And I know that our lives are different because of that, but also I know that there are things that are better because of it. So even though the long drives and the car stink because Arlo has to go to Boston, uh, our family gets to go to Boston and so even though it's for doctor's appointments, we make a vacation out of it and we find a hotel with a swimming pool and we went to Salem and saw the witch stuff and we see the ocean and we make the best of these things because of him. And I know in our family, because Arlo's the oldest, but he has so many developmental delays, it lends to him wanting to watch movies with his eight year old sister that they both like and being able to do things that are younger that most 12 year olds would be like, no, Arlo's cool with. So there's some silver linings there in our family and when I get toil he might disagree, but I'm curious what silver linings you have from the tough stuff. Speaker 2 (40:44): I think Silver linings for sure. Like we went to uh, New Zealand with the, our whole family three ish years ago, right before the pandemic and Penny doesn't like to walk a lot. Um, so she would just flop and when she flops we would always kind of take a second to look around and I think we got a much better picture of where we were. And I dunno, it's interesting what you see when you don't just walk right through quickly and you kind of stay there a while and wait for the flop to be over. So just a lot of stuff she does, I think gives me a different perspective on what we're doing at the time. Speaker 1 (41:24): That's interesting Dean. And it's probably a little different from you being older because it's the reverse of what we've experienced with Arlo. You've probably had to compromise a lot in your activities. Have you felt that? Speaker 2 (41:38): I am, uh, Troy in high school musical? Uh, so when we, when we sing, I am always, I'm always Troy in high school musical. I'm, I play a lot of the Disney princesses too. Uh, I'm an actor, so yeah, I compromise. Um, but it's fun and I make it fun and I have fun anyway, so Speaker 1 (41:58): That's nice. Mila, what about you? Are there some silver linings with, uh, Ollie? Speaker 3 (42:03): Um, we can't really travel because we can't like get on a plane or go on a really long car ride. That's all hard. But when my parents have to take all the way down to Rochester, Syracuse for an appointment, I usually get to end up, um, spending more time like at a friend's house or with my aunt or cousins that's like one silver lining. I get to spend more time with like other family or friends when my brother's away. Speaker 1 (42:37): Oh, that's nice. That's probably a bond you wouldn't normally have. That's awesome. Emil. What silver linings do you see with your brother? Speaker 4 (42:46): Silver Linings with Arlo? Is that basically the reverse from a Neela is we get to travel, we get to travel a lot and sure we have a lot of arguments, but usually when we get there we have a lot of fun. We get to visit new places and I can't remember if it was a business trip with my dad or it was a doctor's appointment for my brother, but we went to New York one time and it was so fun. Uh, we got to go into the Harry Potter shop. There were, it was, it's fun with Arlo around, but another silver lining is, and I think I've already mentioned this, but Arlo probably less of a fear than most 12 year olds, honestly. I mean, because of Arlo getting into more scary stuff, we, we've started watching Ray Dar war movies, uh, well actually only one I believe, but Arlo doesn't really care, but he loves, there are some certain songs, I don't know if you can hear it right now, but he is listening to Thriller Michael Jackson thriller and those are one of the songs he basically repeats and he plays super loud. (44:12): It's very annoying, but Arlo usually listens if he wants to, and I agree with him. He usually, uh, turns it down a little. Me and Arlo have this arrangement and here's another silver lining where he gets listen to music. I get to play video games, games and I have a, probably a longer curfew than most, most kids my age, uh, especially on weekends. I've pulled in all nighter at least three times in my life, which is honestly a lot for me. But, uh, Arlo agrees with a lot of stuff. Arlo has a lot of silver linings and it would take me at least an hour to name them. Speaker 1 (44:54): The three of you just keep expressing so much love to your sibling and it just, it brings joy to my heart and it's making me wanna ask a question that a lot of parents have, but they're afraid to ask. And honestly, it was a question I had after my son was born, which is, should I have another child? I know that this beautiful baby I have has a lot of needs. And someone told my husband and I early on like how wonderful it was to see big families surrounding this child that had a disability. And that brought me a lot of comfort. And I can say hands down, the best thing I ever did was have a meal here and my daughter and Arlo, I wouldn't change anything. But parents have this question and I mean, what would you as a sibling say for parents who are wondering what is your life like? What would you like to share about that? If they were to ask you your opinion on it, what would you say? At the same time, you do not have to answer this question. Absolutely not. It is a really tough question, but you all are wise and mature beyond your years and that's the only reason I feel like it's okay to ask you. So Dean, being that you're the oldest, it would be wonderful if we could start with you. Speaker 2 (46:22): I think my life is better because of Penny really. I mean, I don't know, I feel like I'd be much worse, just not a, as educated and kind as I, as I am. I know it's changed my parents too and the way that they've raised me and that's, that's a huge influence when you're growing up. Yeah, I think, I think I'm a better person cuz of Penny. So if you were going to, if you didn't want to have another kid or you don't think it's gonna be fair to your kid, I think you're gonna raise them better. You wanna make the world better for people with disabilities. Siblings are, I think, the best suited to do that. Even if they're not gonna go into something directly related, they'll do something that's like, they'll keep that in mind when they're doing whatever job they come across. And I think that'll help everything be inclusive and everyone be inclusive. Speaker 1 (47:18): Mila, is this something you even wanna answer? Um, if you do, go for it. If not, you can say no, Speaker 4 (47:25): I don know. Speaker 1 (47:28): It's okay. You can about it. Okay. Uh, Neil, do you remember the question? Speaker 4 (47:33): Not exactly. Can you repeat it? Speaker 1 (47:35): So if, if there's a parent who has a child with a disability already and is on the fence about whether to have another kid cause they're not sure if it's gonna be fair or, you know, what's their life gonna be like? Here you are, you have two siblings, what, what would you tell that parent looking for advice? Speaker 4 (47:55): Uh, I'd tell that parent, honestly, it's up to you, but I feel like I honestly have more privileges than Arlo. I, I get to do a lot because of Arlo and because he's well different from most people. I wanna say, uh, Arlow gets to do a lot. Maya gets to do a lot. I mean, I'd say you should get another kid and you should see, you should see what that child is going to do and how that child is what's gonna happen because it's all up to you. Speaker 1 (48:38): So Neil, if I may, I, it sounds like what you're saying is if you don't wanna have another kid, don't if you do, do because it's not that big of a deal. Is that kind of Speaker 4 (48:48): Yeah, that's a quick summary. Speaker 1 (48:50): Okay. I wanna make sure I don't mince your words. Neela, we're gonna move on to the last question. And you've been so patient, I'm gonna see though first, do you wanna answer that question or no, still? No, that's cool. Uh, the last question, I want it to be happy. Okay. I wanna know what your wishes, hopes, and dreams are for not only your future but for your siblings future. Speaker 2 (49:14): Uh, I mean right now I'm, you know, embroiled and finding colleges and stuff, so, uh, I'm looking at kind of what I wanna do, but for Penny, I think the biggest goal is just to have her be independent and have her be able to like, function on her own and not need as much support. Um, being able to just do things for herself and be self-sufficient. I think she would really like that. She always talks about, I dunno, she wants to be a fashion designer, so we'll see how that goes. You know, we always encourage the things that she wants to do. Like, I think, um, my girlfriend's gonna give her sewing lessons and see how that goes. There's just a lot of fun stuff that, you know, we just encourage whatever she thinks is fun and, and hopefully one day she'll be able to do something with that and do it on her own. Speaker 1 (50:06): I love it. Neela, are you ready for this one? Speaker 3 (50:09): Um, mostly for like Ali's future, um, I hope that he gets more respect and more like help to live a happier life and that like, if he goes to a college, he can do like math and algebra. He really likes doing that stuff. He's really smart and I don't have to like dedicate my whole life to just helping him. Speaker 1 (50:36): Mila, do you feel like that might be something that you might have to do? Speaker 3 (50:41): I mean, I know I'm gonna have to like help him a lot, but I don't want to do that like my whole life Speaker 1 (50:51): Yeah, I understand that and I think that, I think that a lot of kids feel that. Um, and I can't speak for other parents, but I can tell you that I know personally for myself and for so many others, that's not what we want for our, for our children. And I know that in our, in our situation, we are setting up everything we can. So Arlo has his own life and his siblings that's, he is not his sibling's responsibility? Speaker 3 (51:21): Yeah, like I was never asked to, but I feel like I'm going to like, I I should, but I don't wanna do that like all the time. Speaker 1 (51:31): Yeah, I think that's a real concern for a lot of, a lot of siblings and it's legitimate because when your parents are gone, you know? Yeah, I'm sure that weighs on you. Um, thankfully that's a long way from now. Emil, what about you kiddo wishes, hopes and dreams for your future and your brothers? Speaker 4 (51:55): Honestly, for Arlo, I hope that he becomes an, a musician. I'm not sure if he loves, uh, to play the saxophone or not, but I've never really heard, heard him practice, but I feel like that's a wish and hope for him. I believe I googled this one time, but I it's, I think it's one outta five, uh, people with a disability get married, I think, I'm not sure. I don't remember it, but I believe I saw that on Google somewhere. I hope Arlo becomes a famous saxophonist and I don't really have any wishes, hopes and dreams for myself. Speaker 1 (52:46): Will I have plenty for you? Dean am Emil Neela, thank you so much and thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate, review and share and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon. Speaker 4 (53:20): Listen to the next episode, please bye. This time for real.  

Summer camp sign ups are well underway across the country. Parents and caregivers are scrambling to secure spots so they can work while their children make new friends, learn new skills, and have fun.    It's not so simple for the estimated 17% of children ages 3 through 17 who have one or more developmental disabilities. If a child needs extra support or even the smallest modifications for activities and access, the options become extremely limited and, in some cases, obsolete.    Jessye Cohen-Filipic and Cindy Lui are mothers, advocates, and professionals who have ran into road blocks both getting into and keeping their children in summer camps. They shared details of their struggles with The Odyssey.    Even better - they shared strategies for navigating systems, how advocates can support one another, what needs to be done to create meaningful change, and their hopes for the future.    Listen in and share your summer camp struggles and solutions with us. Perhaps there's a follow up episode in our future ...    The Odyssey: Parenting. Caregiving. Disability.    Need emotional or informational support from a parent who's been through situations similar to your own? The Center for Family Involvement can help. https://centerforfamilyinvolvementblog.org/family-to-family-network/   Check out Cindy Lui's TedX talk!  https://www.youtube.com/watch?v=mr_Fff6ZiXI   Inclusive Camp mentioned in episode: Melwood's Camp Accomplish https://melwood.org/recreation-programs/camp/camp-accomplish/         TRANSCRIPT: Speaker 1 (00:00:07): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. (00:00:19): The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down Syndrome. Even though everyone knows what Down Syndrome is, we still don't know that much about it. And as a new parent, I knew absolutely nothing. My journey weaved its way here, working with the Center for Family Involvement at vcu U'S Partnership for people with disabilities. We provide families with emotional and informational support. This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, while calling out the inequities that our children face, living in a world that still fails to understand and embrace disability. Today we're talking summer camp, that rite of passage, so many kids remember fondly that chance to get away from home and be with your peers, either for the day or overnight. (00:01:22): For many adults, though, summer camp is a necessity. School is out, and we need childcare for many, many weeks because we have to work and pay the bills. Even if families are lucky enough to have someone at home. Summer is this seemingly endless stretch of unconstructed time you have to fill. And even the most patient and seasoned child whisperer needs a break from time to time. The offerings for summer programming in most areas are many, for many children with disabilities, though it's Slim Pickens with sometimes no options, it's a heartbreaking reality that many parents and caregivers face and something both of today's guests understand because they live it too. And so do I. So we're going to get into this. Joining me is mother advocate and psychologist, Jessye Cohen, philippic and mother advocate and social entrepreneur, Cindy Lui. Cindy and Jessye, I'm so happy you're both here. We've talked about this over the years, and now we're able to really kind of tear it apart. I'd like for each of you to share some of the biggest challenges that you face. Uh, Cindy, can we start with you? Speaker 2 (00:02:36): Yeah. Hi everyone. Thanks for having me on. Um, I have to apologize in advance. I'm getting over a little cold zone if I sound a little stuffy. That's what it is. I am also part of the Down Syndrome community, and I have, uh, two children. You know, I think I begin the advocacy advocating for my, my daughter who has Down Syndrome, but recognizing that if she doesn't have equal access and equitable opportunities, it also affects my other child, my son. So specifically to summer camps. Your intro is so, it's so touching and moving, and it's also so painful to recognize that these, the summertime joys are not inclusive or not by design inclusive of, of kids with disabilities. And when it comes to education, for example, we talk about multi-tiered systems of support. It's really not that hard to implement that for summer camp, but I think many camp organizers assume that just allowing a parent to bring an aid is inclusion. And that really doesn't, doesn't really shift the culture or the mindset of the campers of the community integration approach, the holistic child approach. I've honestly decided not to do summer camps anymore. Um, because between the private ones and what's offered at Parks and rec inclusion is still the burden of the parent, and that's really hard. Speaker 1 (00:04:10): Yeah. And you know, we talk about burden here often, and I always wanna clarify, and you said it perfectly, but the burden is never the child. The burden is the societal structures that we're up against. Jessye, how about you? Speaker 3 (00:04:25): Yeah, thanks for having me. And you know, I know we're here to talk about camps and, and I will work hard to focus on that. But as I've said to you many times, right, this blurs, the lines are blurred between all forms of childcare and all forms of recreation. My daughter is nine and a half, and we had our first foray into summer camp when she was five. Again, out of necessity, she was in summer school. And summer school ended at, I think, noon at that point. And we needed something for the afternoons and literally fell apart on day one at the only option we had available to us. And, um, yeah, so, so echoing what Cindy said. So I don't find that there's even sometimes an opportunity for inclusion that, that I bear the burden of, right? So I find some places aren't even open to my bringing an aid, and that's if I can find an aid and pay an aid and re you know, retain someone to work. (00:05:20): But, um, I also have been really struck recently by what I I see as performative inclusion. So camps that specifically talk about being inclusive, and then I listen to their spiel and it says, we're really designed for the kids with a mild classification, or we're a camp for kids with autism who don't have any difficulty regulating their emotions. That speaks volumes to me about what they're looking for and about the ableism inherent in their criteria. And the other piece, I know we'll get into this, um, you know, my, my kid really wants friends. She, she near needs socialization. She needs socialization outside of the academic environment, which is challenging for her. Um, she's desperate to do it, but what I'm finding is as she gets a little bit older, there are camps that are inclusive if I'm willing to travel and pay a lot of money. But they're overnight camps. And I don't know that my child will ever go to an overnight camp, but she certainly can't go to overnight camp before she's had an opportunity to do a day camp. So I'm grateful that those places exist, , but I can't possibly make the leap from zero summer recreation to sending my child to another state overnight. It has been a, a perpetually frustrating experience. Speaker 1 (00:06:43): And Jessye, you you point something out that I, I always think is interesting because there are in some places, camps specifically designed for kids with disabilities and sometimes more significant disabilities. I know that I'm personally, like I have a really hard time with that because that is still segregation. And whenever you design special programming, you're setting everyone up to continue that on, not just the expectations for our own children with disabilities who think like they only belong with kids, quote unquote like them, right? But their non-disabled peers are not then exposed to what people are like outside of the vacuum they're put in too. And if we keep perpetuating that, and if we keep doing this, then what is gonna happen to our workforce? How will we fully include people with disabilities if we start segregating them in summer camp and like we do in our schools with, you know, self-contained classrooms? (00:07:42): But it's more than that part. I, I'm, I imagine you, but I'm not sure if our listeners have ever listened to or read N p r Reporter Joe Shapiro's report back from 2018 about people with disabilities and abuse. It touched on the sexual assault epidemic that no one talks about. I'll put the link in the description for this podcast, but everyone has to read this. And one thing that it pointed out is that people with intellectual disabilities are the victims of sexual assault at a rate seven times higher than those without disabilities. And I remember early on in my son's life, he's 12 now, my oldest has down syndrome. I have two younger children who are both non-disabled. So early on in my son's life, I was going to all these trainings and conferences, and I remember one of the speakers talking about, um, sexual abuse in our kids. (00:08:30): And he said, I want you to think about, not if this happens to my child, but when, and so when I think about summer camps or, you know, special programs designed for children with intellectual and developmental disabilities, I just, you know, I know that this might not be fair, but I think of them as sort of magnets for predators because people are aware that children with limited traditional expressive language are often an easy target With all of that, I'm curious how both of you feel about camps designed specifically for kids, um, with disabilities. Cindy, what are your thoughts? Speaker 2 (00:09:08): Um, first I wanna go crawl into a ball and, and, uh, have a cocktail because it is, uh, it is something that keeps me up at night. And then my advocacy work related to public safety and even education through K-12 on sex ed. It's an area that I, that that article that you pointed to specifically sits with me every day. So it, it's interesting too, because I can't help but mark the time in our, in our history where Judy Human died on March 4th and her whole revolution, the civil rights movement started with a camp on all of those individuals started going to a camp that was primarily for disabled individuals. But I think the difference is that it was also run and supported by individuals with disabilities cut to modern day. It certainly is a challenge because, you know, I always think of our kids having, having a long ramp of education and learning, and that involves socialization as well, understanding peers, understanding the sophisticated dance of peer relations, understanding their own emotions, and they are human beings and have natural sexual desires as well. (00:10:30): But understanding what informed consent means, which could be a challenge for the non-disabled individual. Mm-hmm. , I don't have any solutions, but I, I, I guess I, it is, it is a concern. And in that case, it sort of boils to access and privilege. If you have the privilege to be able to afford a trusted support person, caregiver behavioralist aid to be with your child, that is a financial privilege. But it also, the other side of it is access. Would there be a camp that is accessible even with all those systems of support? And again, the financial burden is on the parent. Um, you know, and Jessye mentioned something about performative inclusion, , which kind of got me on this, this summer camp thing. Um, and if I can just share a quick story of my experience of pre Covid summer camp, please. It was, it was a private camp that I went to, and within the hour they called me and said, you need to come pick her up. (00:11:36): And I said, why? Well, she's not going with other campers. Okay, well, what have you tried? Is it a physical inability because could we put her in a, in a trolley that other kids like this is the part of inclusion that's really not that hard. I she physically not able to keep up because she's not running yet, but could she be in a, a scooter that other kids would love to push and take turns sitting in? That would be inclusive solution. So I give that camp at least credit for trying. The second camp that I went to or was looking into to Jessye's point about performative inclusion, made all these statements on their website about social justice and the kind of training and d e I and, and I'm sure everyone in the room listing, like noticing when it's d e I work that doesn't include individuals with disability. (00:12:30): It's not d e I work mm-hmm. . And so I actually called and I said, I'm slow to share that my daughter has Down Syndrome, because that instantly closes doors to conversations. I said, you know, she does have a disability, but I wanna talk about how we can support blah blah. Three phone calls. The last one was returned and the, the camp owner said, we can't support her needs. And so he didn't even have the courage to talk to me directly. He went through his admin and I said, how does he know what her needs are? He's never met her, he's never met me. We've never been on campus. And when they said that, I said, great, can you put that in writing and send that to me? And when people don't wanna put it in writing, they know that they've done something wrong. Mm-hmm. (00:13:21): , and I'm not a litigious person, but thank God. And you know, the ADA A was passed, and we're talking about Judy Human a little bit. I filed a complaint with the Department of Justice. The Department of Justice felt that I had a viable complaint and offered to mediate, but it depended on the camp if they wanted to engage in that mediation. And they refused. And here in the states, the, the American Camping Association has put out guidance that there is no such thing as grandfathered in from the a away from the a d a, there's no grandfather clauses. So you do have to be compliant and work and discuss reasonable accommodations. But that clearly didn't happen because of ableism and bias. It's not a kind of camp that I would wanna send my child to when it truly is performative. And they're talking about how well they train, but they're not including disability in that conversation, or they're not even willing to engage in a parent who's willing to be collaborative. Speaker 1 (00:14:25): Jeff. I think that's more common than we realize. And I know that Jessye and I have talked about that, in fact. So Jessye, I'm not like I have a question posed, but we have this conversation, so I want you to go whatever direction you're feeling now and what you say next. Speaker 3 (00:14:41): So I, I realize there's one important piece of my personal history that I think I should share. And it leads to my next comment, which is that I'm ambivalent about, about specialized, specific camps. Um, I agree with everything that has been said, but I dream of the day when my kid could go to a camp where she'd meet other kids like her in some ways, , and they have a specially trained staff to kind of get her, um, if I think about it from a, a neuro divergent lens, like I would love that. But, but the important piece of my history that I'll share, um, so I was someone for whom summer camp was not a great personal experience. Day camp was fine. Overnight camp was a long history in my family, and I wasn't great for me. But I spent the very first summer of my life, uh, living in a closet of a cabin in, um, upstate New York. (00:15:33): My parents as, um, I guess during my, my parents' graduate schooling. And after they started a camp specifically for kids in this, uh, metropolitan area, who essentially kids who were classified, this was the early mid seventies classified as emotionally disturbed. We, of course, have luckily moved on from a lot of that, but kids with significant behavioral challenges who also were at risk of removal from their families and had involvement with various service agencies. So my parents, along with their friends who were these eager graduate students in psychology, started this program so kids, those kids could get a camp experience that was nurturing and positive and loving. So I grew up along with a couple of peers, like literally sleeping on a shelf in a closet so our parents could run this camp. The fascinating thing that they did at the time was that they then provided wraparound services through the course of the year. (00:16:30): It was really a very early model in sort of community psychology, which wasn't happening. And so they, they said, that's great. We can get these kids out to camp, but what's gonna happen when they go back to their schools and their families without support? And so they started providing some wraparound case management and support services and, and again, really sort of informed the future of, of good community psychology work. And my parents moved away from the area, but there are people, my parents' peers who are, you know, in their seventies who are still in touch with campers from that program 40 something years later. So that, for me was a very early model of a specialized camp that really was there to meet the individualized needs. And for those kids at the time, all of their other experiences were, were integrated. There weren't any other options. (00:17:20): And so it felt like a, a haven. So I guess in some ways I have this vision that someday my, my kid could have that haven could have a place. Um, but you're absolutely right that segregation is not inclusion. And you know, Cindy, when you were telling that story, very different experience for different reasons, but the same thing an hour into camp, you know, you gotta take your kid. It was so very clear to me that they just understood nothing about my child. But I've been told similar things like all, you know, and, and unfortunately, sometimes I don't play my cards close to my chest. And I'll say, you know, okay, my daughter has an autism diagnosis, and I'll hear immediately, oh, we can't meet her needs. Well, you, again, you don't know what her needs are. First of all, you have literally just heard a diagnostic category. (00:18:06): But even that diagnostic category is a spectrum. There's a reason we talk about it as a spectrum, but you know nothing about my kid. Don't tell me that she needs to be accompanied by an adult at all times in the pool. She taught herself to swim when she was three. You know, or tell me that, oh, well, if the aide that I'm ready to send with her isn't there, she can't come on that day, that is not inclusion. Or, oh, we won't have room on the bus for an additional person for the field trip. So she might not be able to go on the field trips unless she's transported separately. These are inexcusable conversations, particularly in this day and age. And the financial burden is real. Erin, you and I have talked about this. My current frustration is with extreme privilege that comes with my professional background, my education, my advocacy, and the resources available. I actually have access to a lot of money to pay for these services. And I can't find anyone to take my money because I can't find a staff person, or I can't find a program. And again, I say that I am extremely fortunate that I have this privilege, but it's a privilege that I can't access because I cannot find ways to give people, Speaker 2 (00:19:25): If I can interject. It often helps non-disabled people to really understand the level of bigotry and discrimination ableism when we just take out, my daughter has autism, down syndrome, cerebral palsy, you name the disability and you replace it with, my daughter is black, my daughter is, um, Chinese. And the example that, and the experiences that we both all have lived, the three of us. And I'm sure to the listeners who can relate that if you replace any disability with any ethnicity, the bigotry becomes so clear because what the quest, the question they should respond with when we share is, how can we support your child? Or let's discuss how and if we can support your child, you know, let's meet, let's look at the space. Let's see, let's look at the calendar of what we have planned. You know, these things are not difficult. Um, I think it's, it's really a closed mindset. And I know that a lot of summer camps are run by small businesses, and I like to support small businesses. But if you're out there parading yourself as a social justice, restorative justice, d e i , and the response is side unseen, we can't support your child, well, then you're also a bigot. There's no way around it. Speaker 1 (00:21:08): I, um, Cindy, I've always loved that you just don't hold back. And you're right, it is so hard. And disability is not included in most d e I work. When we say inclusion as a society, we don't often mean disability. I think sometimes those of us who do have children with disabilities or who are in the disability world, we, we feel like we are included in inclusion because we talk about it so much. But when you go outside the bubble that we live in, it's not really there. And I think it's funny too, that the three of us are here, and all three of us have experienced sending our child to camp and getting a call within hours. I remember getting my son set up for a science camp, contacting them, doing all the things, them assuring me everything was fine. And two hours later, he basically got kicked out of camp. (00:22:06): There's just so much here because when we're talking about, you know, the financial burdens, you know, even if you have the money, like you said, Jessye, to pay for help, you often cannot find people. And that's why I wish that camps would do due diligence to look to support people, especially when you have young people who want to work and want to learn and are probably more open-minded. You know, Cindy, you brought up, uh, Judy Human earlier, who is just an icon. And I wanna bring up, um, the late great David Berger, and I'm not, I don't think as many people have heard of him, but he was an amazing advocate. He spoke to individuals with disabilities about sexual autonomy, and he would speak to, you know, their parents about how your child is a sexual being. You need to accept that and learn that. But he was also just a fierce advocate in, in general. And he said something, um, once, and I'm paraphrasing this, but he said, never ask permission, because asking permission implies that no is an acceptable answer. And he's so right. But at the same time, like everything that we've experienced, it's not safe for us not to mm-hmm. , it's not safe for our child, for us to just put them in something and go ahead. I've Speaker 3 (00:23:27): Experiment. No, I've experimented with that. I tried that. It failed miserably. You know, there was a time in my life where I thought, screw them. I'm not gonna tell them, you know, why should no other kid comes in, right? No other parent of a kid who's identified without a disability, who's not identified with a disability. Oh, you know, Joey has a tantrum if you ask him to take a nap or he eats, you know, only brown foods because whatever. Like, and so I tried, I tried it several times and it hurt my kid. Like you said, it's not safe. Speaker 2 (00:24:02): And I, I, I try it as a conversation is honestly a litmus test to me mm-hmm. to see where they really are on their knowledge base of inclusion. And, and listen, I'm still learning about what that looks like and what supports look like, and I'm still learning about my children, both of them. But for me, the, if the conversation goes, whoa, and you feel the walls come up, then for me, I know, okay, that it's not a safe place for my kid. And this person doesn't even have the mindset and, and mindset for me is at least 70% of the challenge. If the mindset is there, the openness is there, the willingness is there, the seeing the child is there, we might be able to work it out. And it's a lot of work, on the parent's part, but it's willing, I'm willing to do that for the benefit of not just my children, but to, I can't remember who said it, or to the all of society, the community that my kids are gonna be in. (00:25:10): And I have so much faith in this next generation, the youth generation, the leaders, I think there's so much more awareness and understanding and appreciation. I think for right or wrong, even though the inclusion levels aren't where I want them to be, I think that they have been more exposed to disabled individuals in their daily life, their school than I ever was growing up. And so I have a lot of faith that we can work and train, and they are so good at just seeing the kid and trying to have fun. And that's really what summertime and summer camp can be. I also like that approach of, you know, it kind of depends on what it is, but the risk of not taking no for an answer is a pretty high risk when it comes to children who, um, have trouble or challenges communicating, need more time to process to understand. I love that quote though, Erin. It's really inspiring because , there's so many different ways, right? Like Speaker 1 (00:26:18): It's spot on. And I think that because we're in this situation talking about our children, I think that quote more applies to us, um mm-hmm. and how we do it. But I mean, Cindy just mentioned this, and Jessye, I mean, we talked about this, here we are, we're three women who are smart. And before kids probably had a total different life, right? Mm-hmm. . And I sometimes wonder, and again, I like all three of my kids are the best thing that ever happened to me. And my son having Down syndrome has made me worlds better of a better person. So I'm not saying I wanna take that away, but I do wonder if it weren't for all the work that came along with busting through the barriers that society has put up, what my life would be like now, I, I would like to touch on like, how can we change it and what can we do to make it better Now for people like us who are really just getting by, Jessye, what do you think? Speaker 3 (00:27:20): Of course, you're gonna start with me on that one, the tough one. . Um, thank you Eric . So it all comes back to, to advocacy for me at this point, we've talked about the, not, you know, the not-for-profits and the, but for me it's starting with places like Parks and Rec and city organizations, because I think they are the most compliance is required, right? From those places. I have one option locally, and they have very limited resources, and I really value the person who oversees the program. And so two years we registered, and two years those both years, that person contacted me and said, here's why I don't think it's a great fit this summer for your kid. It wasn't ableism, it really was, I'm looking out for your kid. Here are the structural issues, like an acknowledgement that there were structural and staffing issues that were gonna make it not a good place. (00:28:13): And so we're, we're crossing our fingers to try it again. But this year there's so many people interested and their resources haven't expanded that they're talking about having to prioritize people who sign up for a whole summer. Well, guess what, if I sign up for a whole summer and it bombs on day one, what am I supposed to do for my whole summer? Two, they're talking about maybe only being able to send people for half days. Same thing. I can't do my job or live my life with half day camp options so that, you know, those, those are larger systemic and structural issues. But I do think the same way that we demand, and I don't wanna pit this as disability versus some other dimension of diversity and inclusion, right? I think all of it needs to be, and, and what we're not even talking about so far is the additional burdens that, that you talk about if you're talking about kids of color with disabilities, right? (00:29:05): And that, that, that's even more, but that we say, okay, this is a community with X number of kids with disabilities in the school system. The only option cannot be summer school. What are you gonna do? And either the district needs to pony something up, or the town or the city, or whatever it is. And again, maybe it's me doing that on behalf of people who don't have the time and energy to do that. It's different from saying, you have to take my kid to this particular program right now. And more, it's unacceptable to have communities with significant numbers of people with disabilities not being served any recreation setting and asking people to do better. Speaker 1 (00:29:46): Cindy, go ahead. Speaker 2 (00:29:48): I like what you said, Jessye. Um, I will say from a personal point of view, my sister said this to me. She's like, I feel like every developmental stage your daughter is in, and I, I won't, obviously she said her name, but I won't say her name. Um, it's part of a system that you have to change. It's one more thing you have to change. It's like, yeah, you're not wrong. every grade she's in, we've got, there's something we had, she hits, you know, third, fourth grade, fifth grade, sixth grade, whatever, sex ed, you gotta change that access to the gen ed, blah, blah, blah, blah, blah. And then you go to the community and it's exhausting. And covid, I, I think we, we have to talk about the impact, the ongoing long tail impact of covid on us as advocates on us as parents, on our kids, and their access, not only necessarily regression, but loss of skills, be it academic and or social. (00:30:48): So there's a lot of things that can be really overwhelming, but I think we can all take a bite of this giant elephant in this way. I really love, Jessye, that you talked about Parks and Rec, because as tax paying constituents, that seems like a very, very, very reasonable, relatively easy way to initiate conversation and demand for change. So get your two or three minute public speaking comment. Write letters to at least where we live. There's a board that is elected that oversees Parks and Rec. There's also usually a foundational fundraising that supports the things that tax doesn't support. So understand you're a parks and rec municipality because as you, as you said, Jessye, there are, there are compliance things that they have to participate in. And where we are, there's a whole 30 pages of summer activities and then 10 pages for therapeutic rec. (00:31:58): I will say the therapeutic rec is accessible and supportive, and Manny families love it. And I would love the conversation to move to how can we, this is where our community is. How can we integrate as a step towards inclusion, right? So why not the summer training for, for summer camp counselors, you get funding to hire two, three more adults, two, three more kids, college kids, get someone to train them on top 10 ways to be inclusive, top 10 ways to see ability, not disability, top 10 ways to make summer camp engaging. So I think starting with your municipality is a good way. And then coalition building, it really doesn't take more than one plus one as a team, right? . So if you get plus two, you got three people that can speak in, right? Unfortunately, I think it is going to be, uh, an initiative locally. (00:33:00): And then of course there's, there's guidance, there's associations, at least in the state's, camp associations that have put out guidance, legal guidance. And if you have a camp that's privately run that at least show some mindset towards that, I think maybe reach out and talk about ways that can be collaborative, easy ways that are not expensive for them, but that really make it more open and inclusive. And hey, you get a larger community and consumer group because let's remember, as Jessye said, we've got money to spend, we need a place to spend it. So those two things maybe, but honestly, I'm tired. I'm tired of educating the experts that are supposed to be good at this. And some days you just wanna take care of your kid. Speaker 1 (00:33:51): I think that's a tough one for all of us. You're like thrust into this when your child's born and right away you go into early intervention and you go into the therapies and all the things, and there's this big learning curve. If you're a parent who, who doesn't have a disability or doesn't have a relative, like said this before, but my son was the first person I ever met with Down Syndrome. And so yeah, he's 12 and I'm tired, and Cindy, I'm right there with you, with, you know, doing the systems level change and going to speak. And I took it to the next level and I started getting on boards and, you know, running for things because I realized that speaking there wasn't enough to really be a part of the change. You have to be a voice on the board, but it's exhausting. And it's even more exhausting when you have a kid at home with a disability who has more needs, who has more medical appointments. I don't know about you, but I, it's become clear to me that the only time I get out of my house is when I'm gonna go to a board, a board meeting. I like, don't go on a date night, I leave my kids at home to go to work for free. Speaker 2 (00:35:05): Right? Speaker 1 (00:35:06): So how do we rectify that? Like how do we better mobilize the efforts we're doing? Do you have any ideas? Speaker 2 (00:35:14): Nope. , um, well first of all, thank you for putting yourself out there to run for elected office. It's so, so, so important. I think speaking from a parent point of view, you gotta take care of yourself so that you can take care of others. And that's really hard, I think as women, particularly women who also have professional system change goals, a aspirations, et cetera. For me personally, I think everyone in this room is similar. You need something that stimulates your mind too. But it is hard. And I, I think if you need to take a pause, then do, because hopefully it's a choir out there that someone else will be inspired. And sometimes if you're not in the room, someone else like, oh, okay, it's on me now. Right? All I can sort of recommend is take a break if you need to, but always come back and I think when you are at the table, be willing to mentor and train. Sometimes, and based on my experience, it can be a competitive viewpoint of disability as though it's a scarcity model. Like, no, there's a lot of disabled people. We all can have a moment at the mic. We all have a moment at the, but how do you build that bench strike? So it's not you. You're right. I don't know what a date night is. I'm just, I know I say it to my husband, I love you more than sleep. So you go ahead, you sleep . (00:36:49): I'll take the morning shift. . Speaker 1 (00:36:51): Jessie, how about you? I mean, how exhausted are you? What are you doing to like create change but also survive? Speaker 3 (00:36:59): Oh, good question. Well, as you know, I also took on a local leadership position, not elected as the president of the special ed p t a. And, and it's selfish. It's not, it's not all in service, right? To meet other adults who can relate in some way. I met someone at one of those meetings and they're new to town and I'm not, and we forced our kids to get together and hang out a little bit. And it was kind of a disaster, but it was great. I'm on sabbatical this semester, so I'm actually doing pretty remarkable self-care and have the luxury of having some time when my kids are in school. We have given up on trying to even find sitters because again, how many times can my kid experience rejection or incompetence or somebody who's not able to handle her? I dream of knowing other parents who have enough capacity and we know each other's kids enough that we could at least do some sort of, you know, co-op exchange of, of childcare, of anything that's clearly not in the, in the works here. (00:38:03): I've had to reach out and connect with parents of kids with disabilities online and social media and joined groups. And even summer camp, I reached out to this na, you know, a national group of parents and said, where do your kids go and what works? And, and not even spec, you know, specialized camps, but like, hey, you live in a different part of the northeast than I do and it seems like you've got more options. What are the just general camps there that don't kick your kids out? And so trying to mobilize those resources and recognizing, again, the privilege that I would consider driving, you know, six hours to stay in a hotel so that my kid could get a camp experience. This is, this is not on that question specifically, but just if I can, I feel like, and I have to be careful how much I talk about the other kiddo in my house right now, but I, I feel like I have this little built in control group because I have one kid in my house who is identified with labels and, and one kid who's not. (00:39:00): And, um, I think it's gendered in some ways, and it's also about age, but I am finding that I have lots of options available to me for the younger boy who hasn't been identified, even though he doesn't look that different at home or in daily life, right? There's lots of similarities in terms of behaviors and processing and energy, but he hasn't gotten that label. And he is a young, charming boy and it just speaks to me again, and I know this is the broken record, right to the ableism that I can send him. I probably have five choices, six choices of places I can send him this summer, but it also has a built-in comparison. And so we have to have conversations and I'm curious if you do this in your households, but like, he'll say, why can't she come to my afterschool? And we'll say, because I mean, he explains it now as they were mean to her, but I was like, because, and she says because they don't think kids with autism can have fun and they're dumb and I wanna read them a book about autism so they can know that's not true. (00:40:04): But basically, yeah, no, she's, she's awesome in that way, but basically she can't come because adults are, are dumb, are mean, right? I don't know what other words to use, but because they wouldn't bother to get to know her, uh, well enough to, to have her in that setting. But then she has to ask that about not only about him, but about other kids she knows who are there. Speaker 2 (00:40:28): Mm-hmm. that happened to me too, our family. You realize you're at the moment where like, ooh, I am going to, this could be pivotal, right? Yeah. So disability is a family affair for our family and we're cautious about everything is associated with Down syndrome X so-and-so can't do X because of we're like, hmm, might not be Down syndrome. It could also be, you know, because she's 10 and she has her own personality, right? But back to that camp where we got a call within the hour because my daughter quote wouldn't leave the area, you know, after about a week my son went and I said, whatever you wanna decide, we'll honor, I know you're having fun and you've had a week there, but I'll tell you, I'll tell you why we decided to, to not take your sister anymore. Speaker 3 (00:41:22): Mm-hmm. , Speaker 2 (00:41:23): She doesn't feel welcome. They don't know how to welcome her. They may want to in their heart, but they don't know how to do it. And that could really her, that could hurt her heart. Talk about mom guilt, right? But you decide son, whatever you Speaker 3 (00:41:39): Want. Right? Right. , you still wanna go even though they betrayed her. Right? Speaker 2 (00:41:44): Yeah. Um, and I was really proud of him because, you know, he's a little narcissist. That's what they're supposed to be at that age. Yeah. And he's like, well, I don't wanna, he, he actually said, one of the camp kids said, you're, she's so weird. And he didn't know that that camp kid didn't know that he was talking about my son's sister. And so my son in that moment, beautiful advocacy, just looked at him and said, yeah, but weird's cool and walked on. Speaker 1 (00:42:14): Perfect. Speaker 2 (00:42:15): So that was a proud parent moment. And then ultimately he did say, you know, it's fun, but if they're not gonna welcome my sister, then I don't really wanna go. I think that's a teaching moment. I think secretly I want him to be a civil rights advocate, , but he was able to recognize that. And I think the beauty of siblings is not only are they are, is their narcissism beneficial because it is a sense of equality and they balance me as parents, but there also is a tenderheartedness that goes with it that mm-hmm. , I really try to treasure, Speaker 1 (00:42:51): I, I gotta say with three kids, I very much see it this beautiful relationship where yeah, it's self-focused and there's a lot of like questions of fairness, but there's also this, I mean, I know I have built in bias and I just see like the lack of it with disability when it comes to my kids because they've just been, it's their life, right? But at the same time, like the empathy that's there, they also don't take any crap from each other. And especially their brother. There's no like, there's no like down syndrome card for them. Like he gets a pass and I'm like, sometimes I've gotta be like, no guys, he needs a pass on this. And no way. Speaker 2 (00:43:33): Nope. Speaker 3 (00:43:33): Can't change the rose midstream mom. Speaker 2 (00:43:35): No . Speaker 1 (00:43:37): Jessie, can you give us some context as to, you know, you and your wife, you have two children, but you're careful about talking to them. Can you just explain to our listeners why? Speaker 3 (00:43:46): Sure. So, um, my wife and I have been foster parents for about 10 years. And, um, so the other child in my house right now is, has lived with us for about a year, but as in foster care, my daughter has had a lot of kids come through our house since she's been around, but typically it's been teenagers. So this has been a new experience to have a younger kid who's with us long term. I would say, you know, I hear a lot how good it's been for her from people who are well intentioned, but it's really good for both of these kids to have each other. And we're navigating all of what comes with that, right? When, when kids live together as siblings, even if it's short term, but also what happens when someone moves in who you didn't know when they were a baby for the kid and for the adults, right? (00:44:32): It's a, it's all new. And I think balancing that, her sense of herself and just being nine and a half and in that 20 age where she's trying to figure out what is her and what is, you know, who is she? And, and sometimes wanting to explain things away or sort of get the pressure off of her by saying, well, it's because I have autism. And sometimes we have to say like, Nope, it's because you are between, or, Nope, it's because you are you. So yeah, thanks for, for asking that as absolutely shaped our experience as parents and has shaped my kids' experience of kind of us as a family. And again, my parents were foster parents before I was on the scene. So one of those other things that I've kind of come by naturally ish. Speaker 1 (00:45:22): No, it's the generational stuff is beautiful. It really shapes who we are. And that's why like Cindy, when you were saying earlier that hope for our future, I really feel like it's moving too slow for us and it's moving too slow for our kids. But when I think about how we are making steps towards inclusion, this generation coming up can really move the marker, right? Speaker 3 (00:45:43): I I, yeah, and I mean, this is a school thing, not a, not a camp thing, but just back to this issue, some, my daughter will sometimes say in her classroom, well, it's because I'm the only one with autism. And her teacher, her current teacher, I really appreciate this. She was like, you have no idea what's going on with other kids' brains in the classroom. You're certainly not the only person whose brain might work differently. And so that teacher above and beyond whatever required social emotional learning they're doing is bringing in the concept of neurodiversity and neuro divergence and like explicitly introducing stories about people whose brains and bodies are different. And yeah, some of that is to help my kid, but some of it is just because she knows it's good practice and that she is training this next generation of empathic, compassionate, you know, inclusive people. Speaker 2 (00:46:36): I think that's amazing. And I think what I'm, what I'm seeing with our youth leaders and youth in general and the impact of Covid is they really had to be introspective and reflective and try to identify emotions and feelings and, and, and learn coping mechanisms beyond their age. That, let's be honest, some adults still don't have . Like most people are in arrested development at a certain age, and it's not their chronological age. But I think this next generation, hopefully we can get to a tipping point where there is, you know, coupled with legislation and coupled with, with compliance and coupled with mandates, I think we can get there, but it involves speaking up. And I, that's the one thing to your question, Erin, what we can all do is, what you're doing is, it's not hard, it's to share your story. It's to share. (00:47:29): Everyone has a phrase that they remember that some jerk said to them out of ignorance, ignorant malice. And we can remember those phrases and harken back to that moment, even if it was 10 years ago, sharing those moments and sharing those stories as part of the education process, trying not to shame, but if one feels shame, hopefully that opens the door to understanding themselves. And I'm still on that process. I wasn't a social justice warrior, I wasn't like a disability advocate until it hit my life. But I, I always say, boy, as a, as a Asian woman, I have experienced sexism. I have experienced racism, and as I'm getting up in age, I'm gonna start experiencing ageism. But there's nothing like ableism. It is so deeply rooted in, in justified that there's a lot to dismantle and the, the disability rights movement is still fairly young and we've accomplished so much. So I think it, the one thing we can continue doing that's not too hard is collectively sharing the stories and helping people listen and understand and finding that way. Well, we've all felt outcast, unaccepted, not belonging and using that as an entryway to really understanding and making change Speaker 1 (00:48:57): That is really beautiful. And Cindy, you've put it so perfectly because as a white woman from rural Ohio was where I grew up. And then you just didn't, you know, you didn't see much of anything. And so my perspective on ableism, you know, I considered myself worldly since, but ableism feels really brutal compared to the other things I've witnessed. But aside from sexism, I've witnessed those from the outside. So to hear your perspective as someone who has felt that and, and sees ableism as something a little darker and deeper, that kind of validates my perception of it. Cause it, it just feels awful. Speaker 2 (00:49:36): Yeah. There's, and the education of it is so behind, right? So disability wasn't included in the Civil Rights Act of 1964. So there's a lot of history and educational opportunities that were missed that I grew up understanding, well, racism, because I'm Chinese and heard the ching ch China and, and you know, when Coronavirus go back to your country, I was like, I was born here in, in the States race is based on how you look. Yep. Right? Not so we can have first generation Europeans, but they're not considered immigrants because of they don't reflect a look that's different from what's considered quote, non hyphenated America. But I wanna sort of frame this as a positive. The, the discussion, even looking regardless of your politics, but seeing disability in the national, global ether is really promising. And just to continue those conversations, I think is where we need to go to get a tipping point. (00:50:43): It's never gonna be fast enough, but I think it, it will gain momentum continually if we, if we don't stay silent. And sometimes that's the hardest part for parents. Like someone asks me, he is like, oh, you must love public speaking. I hate it. I hate public speaking. I hate it. The TED talk, the TEDx talk, I hated it. Every second of it. I think I blacked out like halfway through I was like, Ooh. But you get out of that comfort zone, out of necessity and then you go home and you do what you need to unwind or you, you do what you need to. Even if your voice cracks, tell your story. I don't care because it makes an impact. Speaker 1 (00:51:20): I'm literally gonna make sure I add to the description. You're a TEDx talk by the way, because it is spectacular. Speaker 2 (00:51:27): Oh God. you're brilliant. Black out. Sorry, I wasn't trying to name drive, but that was like, someone's like, can you do it again? I was like, nuh, no, that's, no I don't wanna do it again cuz I blacked out and I don't know why I wore that outfit. But here we are. . Speaker 1 (00:51:44): Oh, Speaker 3 (00:51:45): Well Speaker 1 (00:51:46): Before we move on to the next question, because I am gonna get back to summer camp. Um, before we wrap up, I'm curious if you have anything to add to this part of the conversation? Speaker 3 (00:51:55): I was just gonna jump in. You know, my evolution has been fascinating. So I, I grew up again with parents who were pretty, um, ahead of the game around inclusion of various sorts, including disability and a and ableism as a, as a kid. It was just, it was something that we talked about, um, although I can remember some, not my, in my family, but some pretty like things that make me s shutter in school. And then I got involved in mental health advocacy and activism as a very young person and continued to do that sort of on the side. And then did a master's in rehab counseling where I was trained for two years on helping people with disabilities get jobs and, uh, you know, access resources. And all the while was living as a person with a not visible disability and, and really not able to advocate for myself, but could advocate in these sort of other ways and now have become a passionate advocate for my kid and other kids. (00:52:59): And so I've been doing some reflecting around why didn't I think I was worth that, right? Why, why, why could I do this? And obviously as a parent it taps into something very different, but I could do it sort of tangentially, right? I could do it on behalf of a community or on behalf of an issue and, and it was part of my profession and my education. Um, and certainly as a psychologist, I worked to help people with lots of different struggles. But it has been a, you know, I wonder, was it my own internalized ableism? Was it, uh, self-confidence? What, you know, what is it? And I'm not gonna find the answer on this podcast, but it is something that I've been thinking a lot about. There's Speaker 2 (00:53:33): Actually, there's actually a, sorry, just to interject, it would be really interesting and I'll tie it to summer camp, if we could, uh, encourage camp owners and camp counselors to take a disability bias test. Yeah. I took one recently not as , not as good as I thought I would be. , it's so deeply ingrained, especially, you know, coming from an immigrant family and the harder you work, the more you achieve, the more get this degree, get that degree you all to be competitive. And then to really reframe that in a way where as it relates to disability takes a lot of learning and unlearning and, and self-awareness. But that would be a fascinating experiment, is to have camp organizers start with a, a disability bias quiz that takes 20 minutes and then use that as a conversation starter. Speaker 1 (00:54:34): I wonder if there's a way we could advocate to require that. It's a, it's an interesting question and it's interesting too because I think I kind of went on a tirade earlier about camps specially designed for kids with disabilities, right? But I recognize my own bias there because I, um, my son really enjoys Special Olympics and he's a special Olympian skier and he's on the swim team now. And I see the benefit of that, but I still have a hard time fully accepting it. And I don't know if that's about me or about him mm-hmm. and even though I have concerns about camp, you know, how do I know he wouldn't really enjoy a camp that had more kids like him? I don't, I don't know, uh, where that's coming from. I do know that inclusion is important. I do know that segregation is not great, but Speaker 3 (00:55:25): Sorry to interrupt you, but for me it's about choice. I wanna be able to choose whether I send my kid to a specialty camp where she can meet a bunch of kids that maybe are like her or whether I choose that she loves Minecraft and she just gets to go to Minecraft camp. And I don't have to think beyond that, right? I want it, I want it to be about access. I want everyone to have that choice. You know, I, I'm talking about a community where there's tons of camp choice, like, I don't know, there's so many specialized camps based on interest or mm-hmm. or, you know, sport, but, but not in these other ways. So, Speaker 2 (00:56:00): And I, I think it also boils down to belonging, right? Yeah. Erin, I really appreciate you sharing that because, and being vulnerable about that, because I think that's part of, and you and I both have children who have visible disabilities, so you have an invisible disability and, and I always empathize with parents who went on that journey because at birth they're like, Ooh, it's, she's a genetic overachiever and this is what you can expect, right? Or he's at whatever with Down syndrome, any other genetic anomaly. But when you have a child who doesn't have a visible disability, I think there's so much more growth and awareness in, how do I say, self-doubt, parenting doubt, maybe. But I think to your point about Special Olympics, I'm such a radical inclusionist and, and I realize that that's what I want. And sometimes I have to hit pause and my daughter's really good about, bye mom. . Like, she says it like, bye Felicia. And I'm like, okay, . It's finding a place where she belongs. And I can relate to that in terms of growing up in the US being Chinese and going to Chinese school and having a quote, a subculture so that I felt a sense of belonging and other people who had a hyphenated, hyphenated definition of American. It, it's a tough one. So I appreciate you sharing that vulnerability. Speaker 1 (00:57:20): Hmm. Thank you. I, I wanna talk about this one camp that my son did go to. We lived in the DC area and there's a camp called Camp, uh, accomplish. It's through a, a organization called Melwood, and it's fantastic. Okay. They offer day camps, they offer overnight camps. It is a camp for everyone, disabled or non-disabled. Everyone is welcome. A lot of the kids that did not have disabilities were siblings. It's like on this sprawling acreage kind of in Maryland where you'd have to like get on a bus to go down. Um, my son was younger at the time. It took a lot of, you know, letting go for me to let him go there. But when I went there for orientation for him, they were able to accommodate virtually everyone. They had nurses on staff when I talked about my son's elopement. Um, and we, I say elopement like everyone knows, my son's prone to runoff and he was very fast. (00:58:19): He's still very fast. He still does it. But then it was like a lot. And so I would always be on high alert and if there were roads and all that. And when I was running that through the camp folks at orientation, I was like, so how do you handle that? Will you stop him? They're like, we don't touch the kids. We do not restrain them in any way. And I was happy about that, but I was still concerned. But what if they're like, we know what we're doing. We will never restrain your son. That has never been a problem. It will not happen. And that's a lot of faith to put in someone. But when I saw it in the works, it was just amazing. I mean, there was proper training to the point where I wish that this place would put on a seminar of seminar for school systems. And I wish there were more camps like that mm-hmm. . And so to me, this is the closest thing I've ever seen to like a dream camp. You know? I'm sure it's not perfect. I know a friend whose daughter goes there, uses a G-tube, needs assistance walking and has a ball every year. Right. Wow. Like they are able to do this. What's So I'm curious, oh, sorry, Cindy, Speaker 2 (00:59:26): Sorry. I'm like, I'm taking notes. What's this camp called? Speaker 1 (00:59:28): . Bellwood. Bellwood. And I can put a link in the, in the description and I, Speaker 3 (00:59:32): Yeah, I just pulled up the webpage. Speaker 1 (00:59:34): . Yeah. If this could be something that would happen across the country, to me this is like the framework. This would be the framework for something. If, if we were to do this. Now, Jessye, I know you've put a lot of thought into this and Cindy, I'm guessing you have, but I'll start with Jessye to give Cindy a break. Jessye, what would your dream camp be? Speaker 3 (00:59:52): So it's so much about the framework and not about the actual, right. So it would be, instead of telling me what they can't do, it would be starting with we know what we're doing and we're, you know, we're gonna keep your kid safe. But it would start with a question of what would make this a successful experience for your kid? And I'm not a Pollyanna, I know not everything can be individualized, but I want someone to start with, how can we make sure your kid has fun and feels welcome rather than, here are all the things we can't do. We can't give meds, we can't do this, we can't do that. We can't promise this. It would be two pieces. One, communication that we've got this and we're professionals and we have experience and more than experience, we have interest. We don't want you to force us to make an exception. We're a big tent camp and so we welcome you in. And then the second piece would be, how can we make sure your kid has a blast? Not how can we manage her behavior? Speaker 1 (01:00:51): I love that. Cindy, how about you? Speaker 2 (01:00:54): Uh, pretty much what Jessye said, , um, seeing the, seeing the kid first and um, giving me, as a parent a sense of faith that they know what they're doing and that it's, we talk about universal design all the time in education K-12, that there are universally designed options for what camp can look like and that there's a respect for what my daughter and my son may or may not want to do. And ways to support that in those moments. Cuz it, summer camp should be about fun. Speaker 1 (01:01:31): I love that. And I think it's important too because a lot of times our only option for our kids is summer school. And I mean, summer school's made to be a little more fun, but it's still at school. And it's still school. Mm-hmm. . And that's not fair. Ending on a happy note, what are your favorite memories of summer with your children? Speaker 3 (01:01:55): Oh, this is hard. Yesterday I came across pictures. My phone, you know, happily suggests memories. And so interestingly we were traveling to New York City to, to participate in a study, but we decided to stop outside of the city at amusement park. I had gone to, actually, my wife and I had both gone to when we were kids. My daughter, who consistently has gone to bed very early her whole life, stayed up late enough and got to see fireworks. And they're just these incredible pictures of her, first of all with a ca a cotton candy that's like, she was five I think at cotton candy as big as her body. Um, and then these pictures that I captured of her seeing fireworks for the first time and she had ear protectors and like, we made sure the sound wasn't overwhelming to her and it was quiet cuz it was, you know, a weeknight, I think and just a magical look on her face of like, I can't believe this is real. Every other time that we had been around or available for firework, she was asleep or it was too, it was sensory overload. It was too loud, it was too crowded. And we found a way to do it a couple times since then. But that is just this, like, her cheeks are tan and pink and, and she's sweaty and she's just ridden, uh, carousel in the, you know, dark. Um, so that's one that, that there's lots, but that's one that just came to mind this week cuz I was reminded of the picture. Speaker 1 (01:03:18): Beautiful. Cindy, what about you? Speaker 2 (01:03:20): We're lucky to live in southern California or in California. There's stretches of coast and beach so we can drive 20 minutes and really enjoy the beach and the sand. And, uh, both kids love it. It's a great family place because they're too scared to get in the water. So I can actually sit and give them a little, a little length to be away. And both kids love it. They, we dig for sand crabs, make sand castles, go up and get fish tacos and it's a great way to spend the day and enjoy outside and it's free and it's a family thing. So those are some of the happy memories of summer and then getting together with family, um, over 4th of July as well. Speaker 1 (01:04:06): Oh, that sounds dreamy. Yeah. On that note, I wanna say goodbye and thank you both so much for joining me. Speaker 3 (01:04:14): Thank you for, for giving voice to this topic. Speaker 2 (01:04:17): Yeah, Erin, thank you very much. This was fun on Speaker 1 (01:04:25): And thank you listeners for joining us. We're just getting started with this podcast and can't wait to bring you more. Please rate, review and share and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle and we'll talk soon.  

The moment you become a parent, your life is transformed forever.    For parents of children with disabilities this transformation is on a whole other level. For some of us, it's a defining moment where our life is split in two: before and after. Because we're not just parents anymore. We're caregivers.   The end to that caregiving role isn't after high school or college or when our child moves out. It's for life. And the heartbreaking reality is that we're caregivers until we die or, the unthinkable, our child dies before us. That part is rarely talked about because it's so painful, but also because the joy and honor of being our child's caregiver overshadows it.    Jamie Bruen bravely opened up to The Odyssey about all of it. Who she was before she was a mother. The trauma of her son Liam's birth. The amazingness of who Liam is. The beauty of the family and community that surrounds her. And the evolution of her existence from a war veteran to an adaptive physical education teacher, to a mother and caregiver, and now a professional baker.    Her journey is a powerful one, her story is worth every second of this nearly 90 minute listen. Join us.   The Odyssey: Parenting. Caregiving. Disability.   Need emotional or informational support from a parent who's been through situations similar to your own? The Center for Family Involvement can help. https://centerforfamilyinvolvementblog.org/family-to-family-network/     You MUST take a look at Jamie's cookie and cake creations!!   Facebook:  https://www.facebook.com/sweetgratitude   Instagram: https://www.instagram.com/sweet_gratitude_bakery/   Email: [email protected]     If you want to learn more about Jamie's nutrition coach, you can check her out here. BONUS: Anyone who mentions the podcast gets a discount! https://www.rdnutritionandwellness.com/    Tobaccology, the cigar shop Jamie raves about: https://tobaccology.com   Maggie Austin's sugar flower immersion class: https://maggieaustincake.com/products/sugar-flower-immersion   The Make-A-Wish Foundation:  https://wish.org     TRANSCRIPT: Speaker 1 (00:00:06): Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down that path 12 years ago when my first child was born with Down Syndrome. Arlo was the first person I met with what is the most common chromosomal condition in the United States. I was ready to be a parent, but I wasn't ready for this. No parenting book. No wisdom from the elders in my life had any insight on what it would be like to have a child who needed support for the rest of our lives. My search for answers and support brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. We provide families with emotional and informational support that is so desperately needed. Our podcast digs deep into the joys and hardships we face. We're gonna celebrate how amazing this odyssey of parenting, caregiving, and disability is, but we're not gonna shy away from the tough stuff either. And today we're doing all of it with our guest who happens to be a family navigator with the Center for Family Involvement. And someone I'm lucky enough to call my friend Jamie Bruen. (00:01:22): Jamie, rather than formally introduce you, I want you to tell us who you are. Your life story is so compelling, and I've always been in awe of you. And like many of us, you're almost two completely different people. The one you were before your child and the one you became because of your son. Liam, why don't you start us off with who you were and what you did before you became a mother. Speaker 2 (00:01:46): Sure. Um, I honestly think my whole life I've kind of been trying to figure out who I am or where I kind of fit into the world. It took me nine years to get my undergrad, and in between that time I joined the Army Reserve. I did one deployment, went to Iraq when we, um, invaded the country. Um, but after that, I decided after my six years, um, and being overseas, that wasn't, not that it wasn't for me, but that I eventually would love to have a family. And it's hard on any parent, but especially a mother. Um, not that I had any near future plans of being a parent, um, single no way. But, you know, just thinking down the line and, you know, war's, war's, not fun. So I stopped and finished up and I, I eventually, I had my, um, undergraduate in health and physical education teacher and I decided to go get my master's in adapted physical education. (00:02:40): Um, the program was amazing, fully paid for, and a stipend. I wasn't sure if this is what I was going to actually be doing, but I figured, hey, if you can teach a child with different disabilities, everybody's on different skill levels cuz you could even have a child that does not have a disability whose skill levels are so poor that whatever you learn from working with people with disabilities that are stereotyped to having these horrible skills, it's gonna help because a good teacher should be able to target any child at their skill level, healthy, non-disabled. So it couldn't hurt and I wanted to go to UVA my whole life. So it was like a dream come true. So I did go get my master's in what a wonderful experience. The program was great. I loved working with the kids. Um, it was just amazing. But after I left, after I graduated, I should say I'd always wanted to live in Boston. (00:03:37): So I figured, hey, let's go up and teach in the city because I don't know what I'm gonna be teaching adapted pe but I'm guessing stereotyping that city schools are not fully funded. Kids are probably lacking in certain skills, so let's go for it. And I wanna live in Boston. So I did. I went up and taught elementary and middle school, pe um, and yes, skill levels all over the place. Equipment underfunding a lot of the stereotypes about the inner city schools, but also some of the most amazing kids. It was, you know, I can't say it was a great experience, but it was an experience and still have communication with some of the kids and parents from 14 years ago. And it's been fun to see a lot of them succeed. Um, but while my last year of teaching, I became pregnant, um, single mom and I was like, okay, I'm gonna do this. (00:04:34): I have a very supportive family. My first pregnancy, I was working full-time plus extra hours coaching and it was an extended school. So all the tests, everything came back fine. Looking back at it afterwards, I was like, oh, you know, there was no movement but I felt with a water moving around. So I was like, oh, that must be it. But I never had any of those kicks or anything like that. Um, and actually at one time I think they did a test in his marker came up that he could be positive for. He had a risk, he was at higher risk for down syndrome. And I was like, so you know, that's my kid. That's gonna be my kid. We're going forward no matter what because I'm connected to this child and he's gonna be loved. Little did I know that was not it. (00:05:18): Um, so his birth, I don't, I don't, this this population that I'm talking to you guys right now, listeners, you'll, you'll understand this. I don't really talk about this much with other people cuz it is a very, very hard topic. Um, his birth was very traumatic. Um, you know, my water broke a month early. Um, my brother-in-law and sister came over, rushed me to the hospital, took a while. His heart rate was going up and down. They tried to induce me. Um, he didn't come out. So we went in for the emergency C-section. Um, and when that came, when that came, I remember sitting there and just at that point before he's come out, the reality of everything hit me. And I was talking to the anesthesiologist saying, please let everything be okay. My sister's there with me and I'm holding her hand and I'm saying, please let everything be okay. They get Liam out. I hear what a beautiful head of hair. And then silence and he's just rushed out of the room. Um, it was Memorial Day weekend, so there wasn't much staff there. It was horrible, horrible, horrible, horrible. Um, I was, since the C-section, they brought him up to the nicu, you know, they had him intubated, they brought him to the NICU and I had the C-section and I couldn't, um, do anything. And I'm still drugged up. And the questions coming in were, what drugs have you taken? What have you done? And I'm sitting there like nothing. What's going on with my son? (00:06:53): What's going on with my son? Um, I didn't get to see him for a while. I forget exactly how long cuz everything was such a blur. Such a blur when I got up there. Most beautiful little boy ever. His head full of dark hair. Oh so much hair and not moving one bit. All these wires and tubes through him. And I just see this little kid sleeping peacefully and a Red Sox fan. Big Red Sox fan. And I remember sitting in there over his little, I forget what they're called, his little egg shell thing, whatever it is, plastic thing banging on it. Same please Liam, we'll take you to a Yankees game. Please, Liam, just move. Be okay. All you can, you can, you can, you can like any sports team you like, just be okay. Just be okay. I'm okay. So then we just had to wait. Um, the nursing staff were there was amazing. I think it took 48 hours for me able to be able to hold him where a nurse who had been like, I have a child with a disability. Have you held your son? And I'm sitting there saying no. She put him on my chest and I just held him and hugged him. (00:08:17): Uh, um, and it was most beautiful thing ever. And so there began our journey, um, not knowing what was going on. (00:08:32): No one could have known. There's no test for what he has. He was actually misdiagnosed. They did some a biopsy. They said he had a lot of glycogen storage, a glycogen buildup in his muscles. And um, they misdiagnosed him with glycogen storage Type four. I think there's no treatment. Um, there's no treatment for anything he was diagnosed with really. So not it would've mattered. But what I did was I, um, saw all his symptoms, how he presented what you needed to support with everything. I got online and I found congenital myopathies. Um, and the one that he seen the most, like was called mild tubular myopathy. N t ntm affects mostly boys. It can't be X-linked. So I reached out to them and they put me in touch with other people. Um, because now I had to go through the process where my son can't breathe, he can't move and he can't feed. (00:09:31): What am I gonna do? Am I gonna bring 'em home? Or was uh, they put it, was I gonna let him expire? Um, is just a horrible way of saying it. Horrible. Who the hell says that? That's awful. Mind you, this is not the nurses. Nurses are amazing. Um, so I mean in truth is, and saying Am I gonna let him. Are you? Because it would be nature taking its course. It's not letting you know, it's not, I hate that because this is the worst. This is an extraordinary situation with pressures on parents. Um, and just the way to say, to say it just puts different pressures on people and people have no clue. Um, but the m t m people got in touch with me. Um, and I started talking to people online, to people that had let their sons peacefully leave this earth. (00:10:30): And uh, one person in particular who had let one son leave instead of it was the worst thing she's ever done. Um, and then her next son she had who had the same condition and it's a hard life. It's a very hard life, but it was a harder life watching her son leave. It was the worst thing she ever did. And other people who had with their sons and felt that that was the correct thing for their children. Um, I even had one mom, her name is Erin. She's the most amazing woman in the world whose son was 12, I think about the same age as mine, who was at Boston Children's Hospital. He's so, like, he was so like Liam, come and visit me while I was in the NICU. And I remember I was so tired. I was like, I can't handle this. (00:11:15): I didn't answer her calls and she came with her son anyways. I wouldn't recommend that to most people for, unless you live our lives. Don't, don't go be busting on people's doors or doing anything , especially at that time. But I'm forever grateful. she will who passed away a year ago in February from his, my tubular, my apathy came and visit me in the hospital where she talked to me. I got to talk to him and see what life would be like real hand. Um, and the impact that has made on me was amazing. But I also did, um, have all the tests done to see what Liam's, well not tests, but just whatever they could do to see is Liam in any pain? Um, is Liam in any pain? Is he suffering? Cause he is. And he was. And he still is my number one. (00:12:10): Everything is for him. Um, and there was nothing, there was one time where I came in and his stomach was distended and they weren't sure if he was gonna tolerate his needs. Um, so they decided to give him a G tube, or do the do feeding through the g tube. And he was fine. And I, I don't know, it could have just been a bad day cuz he has been fed through his G-tube by mistake from nurses and he is been fine. But that time I was like, I don't know if my kid's gonna even be able to have nourishment. Um, but he was fine. Um, so after that we, he was in no pain. He was just the most peaceful sweet little guy. Um, and I talked to my family, being a single mom and uh, just the support. I was so blessed. My dad was like, we can do this. (00:12:58): We can do this. Not, not pressuring me, but we can do this. What do you want to do? And there I am thinking, okay, cause they're giving me all these timelines. What life's gonna be like. The doctors are telling me, I'm like, okay, it's gonna be a couple years. I can do this. Couple years. They're gonna tell me he's gonna die. And what they told me he had, no one had lived past seven months at that point, or very rare. There was only a couple people that had lived past seven months. And I'm like, you know what, if I've got seven months, I'm gonna make this the best. Um, oh boy that came into that seven month who was just like around there. It was just wow. Terrifying. Um, so I decided since as my mother's instinct, Liam was peaceful, happy. (00:13:44): I was gonna give him a chance of life and whatever. People who don't live our life say quality of life here. I had this mom whose son came in to see me talking to me about the beauty and these moms, they never soft coated it. I would, they would've never told me this was gonna be easy, never once to try to influence me. I was so grateful for that. I mean, I went into this knowing it was gonna be hard, not fully understanding cause I hadn't lived how hard it's gonna be. But I also had this amazing support from my family, online people. Um, I said, okay, I'm gonna do this little did I know what I was getting myself into. Holy smokes, what the okay, . Um, no regrets, trust me. No regrets. Um, so he was at the Boston for two months and we were actually able to have insurance pay for our flight down cuz my family lived in DC area, Virginia. And where he transferred Children's Hospital. And then we went to a hospital, they changed the name now, but it was called Hospital for Sick Children. Last time I looked, they, no, last time I looked they changed it to HSC, formerly known as Hospital for Sick Children. (00:15:03): I felt, I'm like, oh yeah, that makes it a lot better. And cuz he came early. I hadn't been, I'd been teaching, obviously I had my time off. I was able to go see him every day. Every day. And I had two…  one sister and another friend who lived up there, who were there, who came with me when I was in Boston. Mm-hmm. every day to the hospital pretty much every day. My mom drove up every day we were going in there, which was also crazy cause I was holding him. And I ended up having a blood clot a week later after he was born and having to call an ambulance cause I'm on the floor rubbing it, which is the worst thing in the world. Um, in my leg. A  DVT, um Right. I'm jumping around cause I already got to DC but now I'm back to Virginia. (00:15:41): I'm, I mean, as I already got to Virginia now I'm back to DC . Um, so that was also in there too with the emotional postpartum, everything. But we did get to HSC where he was there between Children's and HSC for another two months. He came home at four months. We had to, we had to have a nurse come home with us. She worked one night I think and said good luck and left . Oh wow. I know. Oh. So, uh, talking about nursing, as many of you all know in this home healthcare, the stories, whew. I, unfortunately, I have a very good network of three nurses. I could use a little more help. Two night nurses right now, and the one's been with us since that October. He came home in September and she started working that October. And she's been with us ever since. Speaker 1 (00:16:26): Are you serious? Speaker 2 (00:16:27): I am, but I also knew. Because she, she came in with a notebook, taking notes, walking around it, just her attention to detail. And I was like, Hmm. Then she … she talked to me later. She was like, I don't think I'm gonna be able to work because I need to be able to get home at this time to get my kids on the bus. But I said, okay, that's an hour earlier. We will be down. We will be down. You can leave earlier. Can you please work? And guess what, she's still here. Which, oh, sorry. Did you have a Speaker 1 (00:16:57): Well, no, I was gonna say, let's stop for a second because Liam is how old now? Speaker 2 (00:17:01): He's 13 now. He's 13 and a half. He'll be 14. She's been with us for over 13 years. And that is almost unheard of. Speaker 1 (00:17:09): Oh. Uh, that as anyone with any, most of our listeners would have knowledge, I would think, given the topic. Right, Speaker 2 (00:17:17): Right. Speaker 1 (00:17:18): That is unheard of. That is a dream come true. I bet she must be like part of the family at this point. Speaker 2 (00:17:24): She is all my nurses. Well I, like I said, I only have three, are part of the family, you know. But it has taken…  I am blessed that my parents are able, they open their home to me, their finances, to Liam and myself. So I'm also, I, I know how fortunate I am where I've been able to adjust to adapt to her schedule where she'd have to leave a lot of times in the summer to go to Puerto Rico to visit her family. So I had that extra benefit of being like, okay, I need you here. She was working nights. She now brings Liam to school. I don't know if I could ever find another nurse that I trust like her. So there's been a lot like of give and take on both of our ends. That I'm in a situation that I know a lot of people aren't in.  That situation to be able to adapt your own schedule when you have a good nurse. If I hadn't been able to adapt continuously, she wouldn't have been able to stay and then, and go through all this craziness with people. Speaker 1 (00:18:14): I think that that in and of itself, Jamie, is something that we should have a whole separate podcast about. Because I think perhaps, uh, think about like, like how to work with someone who's amazing to keep them for as long as possible. That in and of itself is just, we can dive in. I wanna go back and I wanna first off, thank you because you were crying. I was crying and anyone listening, I, I can't imagine they have dry eyes because anyone who has been through something similar can very much relate to what you've been through. I mean, I know what it's like to not be able to hold your kid in the NICU. Speaker 2 (00:18:55): Right, right. And I, I don't, I don't talk about it with people. And this is the first time I've gone over it in probably years. You know, every now and then I'll talk about it with other moms one-on-one that might be in a situation. And I might not go into all that detail, but they talk about PTSD. I mean the first six months, if anybody was having a baby about to have a baby where I'd be crawled up in a ball on the floor, on the floor crying and still sometimes it just, it hits you. Yeah. It hits you so hard. And it's like you can't, you can't control it. That the continual trauma also that is involved but that birth trauma. And I can't imagine the parents that go through this and then have to leave permanently without their child. I mean, how that like, my heart, my heart to these parents that's suffering. I mean, we don't talk about it enough in this society. I've … the quote, the parent, the quote that there's always a husband that loses his wife is a widow or a wife that loses her husband is a widow. A child that loses their parent is an orphan. But what is a parent that loses their child? We don't talk about that. And then having a traumatic birth and then someone leaving without their child. Oh my heart. Speaker 1 (00:20:16): It's, it's unnatural. I mean, I think about losing a kid at this point. You know, at any point, you know, my children are 12 and 10 and almost eight. And as I tell them, they, you know how kids ask strange questions and like, what would you do? I'm like, I don't know. I would have to live for the rest of them, but I would be dead inside. Speaker 2 (00:20:39): And that, that's honestly one is my, my biggest, I try, I, and I'll talk here about it. I try not to, I might say that to people, but I have to because my son, I have to outlive my son. (00:20:50): Yeah. And when I, and I can say that, but when I actually stop to think about it, seeing other friends that are outliving their children, or especially if they don't have any other children and seeing how they can function, the other children might help you cuz you have to for them to survive for them. But at some point, like, I need to outlive my son. He cannot go into an institution, he cannot be hospitalized. It would destroy him. It would kill him. Um, so that, yeah, that's a hard reality. Like a smack in the face. It's just, i I don't have words for that because it's just a reminder right now, living in the moment. I mean, we have everything prepared. We have his graveyard, I have my graveyard prepared. My parents help out with this again too I'm  so blessed. You know, I have my son's graveyard, his plot ,mine. And that when you stop and think about that, it's just, it's morbid. It's horrible, horrible. This is something that has to, nothing can happen to me. Speaker 1 (00:21:54): That level of pressure and stress that we live under, that is something I don't think parents of non-disabled children can even begin to understand what that does. That constant, it is always in the back of our heads. Um, Speaker 2 (00:22:12): Always, Speaker 1 (00:22:13): Always, Speaker 2 (00:22:15): Always, Speaker 1 (00:22:15): Always. Speaker 2 (00:22:16): People that will know that they will outlive their kids. They have to have the money, they have to have, who's gonna care for them. Kids can't live on their own as they become adults. And that pressure is just, it's unreal. Speaker 1 (00:22:29): It is unreal. I, I once had someone say to me, and I'm sure you've heard the gambit of the most ridiculous, insensitive, ableist commentary, but someone once said to me is, you know, my son has down syndrome. And they said, oh, you know, parenting always comes with letdowns and disappointments. You just got yours at the very beginning. And I was a new parent at the time. Uh, if I could turn back time right now, like I would've said some expletives because that's really all it deserves. But instead I just sat there thinking, you know, this is someone in their seventies and I should listen to them because they're wise and it still makes me angry. I mean, what kind of things have you had to deal with? Speaker 2 (00:23:13): Oh boy. Well, the first thing is why would I ever make my son live like this? Speaker 1 (00:23:20): Oh. Speaker 2 (00:23:21): Why would I do this? Because he's got tubes, he's got wires. He relies on everybody else for everything. Why would I do this? And I, and when people say that now then I, I used to get defensive. Um, now when people say it, I just, I feel so sorry for them. Mm. Because my son has known more love in his 13 years. Probably more love in his first year than most people will ever know. He can communicate with his eyes, with sounds and through a communication device. Yeah. He has his moments. He's a 13 year old boy, but he is pretty much the happiest person I have ever met. And it just blows my mind cuz he doesn't give me time when I'm with him to feel sorry for myself. Like, I hate that if he has a hard time, like there have been times over the years where I've almost lost him and he'll bounce back and two minutes later he's ready to go. (00:24:23): And I'm like, Liam, you need to stop being so happy right now. I need to curl up in my corner and feel sorry for myself. Mm-hmm. Um, and he does not, he does not do that. I ask him all the time, Liam, do you like your life? He's, he'll tell me. He loves it. He loves his life and he doesn't wanna be anyone else. And it just, it's that constant reminder that when people say, oh, quality of life, I'm like, how dare you look at someone's life and tell them what their quality of life is. Just because in this society where everything is, especially in the States, what do you earn? What do you do? What do you buy? How big and flashy are things? And I do believe in God. And that to me, when I when I hear that, I'm like, that's not the purpose of this life. (00:25:17): My purpose is not to be out there trying to go buy things. Sure I have my moments. I like it. We're human. But when I see that smile and that happiness from this kid, I mean this is what, this is what it should be about. Not that pressure. Their shoes. And like I said, again, give me some fancy baking stuff or some workout clothes. And I am like, heck yeah, take my money right now. I want it. Mm-hmm. , um, instant gratification with that too. But deep down, I, I mean there's more of a purpose in this life than that. And if people can't see that, no matter their beliefs, if this is where you think you're actually getting your happiness from external things, you're crazy. I shouldn't say you're crazy. It's probably not appropriate to say but . But you know, you know what I mean? (00:26:10): I know what you mean. Your priorities wrong. You have your priorities wrong. People should be your priority and we can't save the world. That's one thing I've had to learn. Cause I try to save the world. I can't save the world. It could just be the saying hi to a cashier type of thing or smiley and not bickering at people. You know, he's that constant reminder to me of this. Actually when he was little in the hospital, the first week we had the talk with the doctors and I had never seen him open his eyes. So I asked the doctors, okay doc, is he gonna open his eyes? And the doctor told me he might never open his eyes. So, you know, I am distraught as can be. And I go back to the nurses and the nurses are like, they didn't read the charts. (00:26:52): He opened them last night. Okay. And so, you know, our, from that motto, because Liam can move his eyes, um, he can move his little fingers and he can move his eyes, his tongue. And our, our motto has been eyes wide open, kind of living life the Liam way. And yes, I am not perfect at it. There are many times I want to strangle someone, throw a book, punch a wall, um, just get so frustrated with people. And his, his purpose in life is not to open anyone else's eyes. I hate that when people say, oh, but he's done this for you or changed your life. Yes, I'm very appreciative of that. But that is not his purpose. He does do it. He does make me a better person. He makes, I think most people around him, if they are willing to let him into their lives and actually see him as a person, a better person. I mean, I wanna, I wanna go out, I wanna have fun. Sometimes still, I like to think I'm still young at 45. I mean, I do occasionally here and there, but it's, it's not, it's not my number one thing. Speaker 1 (00:27:54): Yeah. Isn't it funny how the things that you think are gonna be great, even even experiences we try to create with our children, whether it be going somewhere or getting them something special, you know, I find the kids just don't care as much as something as simple as listening to a favorite song or Yeah. Or like watching a favorite movie or just hanging out. Like the joy does not come from spending money. The joy comes from just being together. It's sounds cheesy and, and and whatever you wanna call it. But it's absolutely true. Speaker 2 (00:28:34): A hundred percent true. I mean, people are always like, what can we get him or what can we do? And I'm like, yes. He gets excited at a present, he does. But then literally five minutes after he gets his present, he could really care less about it. And if there's a present, I'm like, tell people come over and watch, actually watch a show with him for 30 minutes. Interact with him in the show cuz he likes to interact with the show. And that is the most exciting thing for him. But going back to what you said about like going out, and that's been hard on me because, and I should say it was hard on me. The pressure's okay, I want him to go out, I want him to do this much stuff. Um, I want him to experience this where I realize now as he gets older, he's very adamant he doesn't wanna do certain things, which is also very typical. (00:29:18): Right. And I need to respect that. And when I've started to do that, realizing I don't need to, not that I was ever keeping up with the Joneses, but even trying to do things that I thought he might like or that he can do with friends. Trying to push that where he's like, I don't  wanna do it. And, and when I've started to learn to respect that, I'd be like, it's okay. It's okay that we don't do this. It's made my life a lot more peaceful. It's okay that I don't have to meet other people's expectations. What their 13 year old might be doing in a way that Liam could do it. Obviously we're not gonna be doing things that most 13 year olds can do. Not not even close. Right. Um, but even from like his birthday or he doesn't even like to go to the movies anymore. (00:30:02): He used to love to go to the movies and now he's like, it's just too loud. It's not as comfortable in his chair, his wheelchair. And he'd rather be at home and watch a movie at home. And you know, that took me, I tried to make him go a couple times and he's just like, I don't want to. And he was not upset about it. He's okay with that. Where I had to be like, okay, he is okay with this. This is what he prefers. He's telling you be thankful that he is telling you this is what he wants to do and he's happy about it. He's not happy when you're making him try to do something. Speaker 1 (00:30:30): I wanna touch on this a little more because this is actually in the list of questions I had for you Jamie. I think it's interesting. I have a similar issue where it's not the logistics you have to deal with, right? Like wheelchair and equipment and whatnot that Liam needs. But, uh, behavioral stuff. And I think the families and the people listening can relate. Like doing simple things like going on a vacation or going to watch the sunset or going to a movie or a baseball game or a school dance. I don't know, you name it. Right? It feels like lifting a mountain, just getting my son to go to school in the morning because of behavioral stuff is like every day as this like task that brings such stress. And so I think often we feel like we need to keep pushing because we want some sort of normalcy. We want to make sure that they have friends because that's the expectation and normalcy. Speaker 2 (00:31:30): So that word normalcy because it seems it's normal to do these things, right? And we've seen that be my, my life is not quote unquote normal and being able to actually get over that. But see here's the thing too. A lot of people and you included have more than one kid. I only have one. So that adds the extra pressure. Cause I know siblings, a lot of times of kids that disabled kids, they have got, they make sacrifices, they make big time sacrifices where the pressure on a parent like you is different because you want your other kid to enjoy something. The pressure on me is different cuz this is what society or this is what's normal and he should be doing. And then when I say to him, okay, we're gonna do it. If we're gonna go outside, we're gonna go outside for as long as you want. And if he's only out there for 10 minutes, guess what? He's happy about it. And then we're back inside and yeah, I'm exhausted. But he's happy. He's completely happy about it. I think since I've been able to let go of that, it's been great. But you have a different burden. I, I hate burden. But you, you have a different pressure. Speaker 1 (00:32:40): I'm okay using the other kids. It's true. The other kids, and I always wanna distinguish the burden is never our children. Correct. The burden is that the world is not accessible. The burden is the ableism society puts on us. I, I just, I I hope that whenever we talk about that it, I wanna make that clear. Speaker 2 (00:33:01): And you know, a lot of times when I have people ask me what's wrong with him, I will now look at them. I was just talking about this with another friend who's people or adults were asking her, what's wrong with your kid? Um, and when adults ask that it, when kids ask it, do I say it a little differently? A lot differently, right? Because kids are kids. They're supposed to. I'll be with adults, ask it. I look at them, I said, there's nothing wrong with him. There's something wrong with the world that can't accept him. be more like, oh okay , Speaker 1 (00:33:29): It's perfect though, Speaker 2 (00:33:30): But I wanna make clear there. It's absolutely zero wrong with my child. And when kids ask it, I'll be like, Hey, there's nothing wrong with him. He might just need a little extra help with his breathing. Where I've had kids be like, oh, so it's like air conditioning .And as most of us probably know, kids are like so accepting and they're like, oh okay. Oh that's pretty cool. Or before it would be like, oh wow, he's got wheels or he doesn't have to go to school certain days cause he only goes part-time, you know? Mm-hmm. Kids, kids are lovely. Why do people have to grow up? But adults, I don't have the patience. Not the patience, but I don't have the bandwidth I should say really for questions like that now because this is my son and the person I love. What's wrong? What is wrong with society? (00:34:12): And I know that times have changed and a lot of us, including myself, you know, I look up when I grew up what's, when I grew up, there'd always be the MDA  Marathon Jerry's kids. Mm-hmm . And that was such a thing to make fun of other kids for, to being a Jerry's kid. Right. Guess what? My son's a Jerry's kid.  That's muscular dystrophy. I look now and I'm like, oh thank God certain things have changied or now we're understanding or that the fact that disabled people are out in society more, it's not like, oh you see someone, you're like, oh wow, you see someone, it's like oh wow, look at that person cuz they're never out and about where now it's nice to see you go to, I go to church. When there're power wheelchairs. There are wheelchairs. Yes. I don't go out too much. But even every now and then, you know, I'll go out and say at a restaurant and you'll see more disabled people or kids And that's the way it not the, I mean yeah it is the way it should be cuz they are members of our society and there's nothing wrong with a disabled person. Speaker 1 (00:35:17): No. Um, and I often think that part of the reason, I'm not sure if you feel this way, part of the reason it was so hard for me when my son was diagnosed with Down syndrome is because I'm also 45 and we did not have people with disabilities in the same classrooms as us. We didn't even have them on the same buses as us. It just didn't happen. We are of the age where our peers with disabilities were left to die, were institutionalized. You know, if we have a peer with a disability who lives in society, our, that is our age. Like I, I wanna go and thank that parent for bucking the trend and being the amazing person they were to say, Uh-uh - this person's coming home with me. This child is my child. Like things have changed dramatically. And I feel like kids now, if we don't mess them up with our silly adult ableist ideas are going to be much more accepting. They already are so much more accepting. It's very, very different. Speaker 2 (00:36:23): Thank goodness. I mean just, I mean that was my big fear too with him going to school. And I know he's sheltered even at school cause he does have a nurse and he does have a one-to-one aide, but he'll be in the hallways and he will have kids coming in. He is in middle school too. As we all know, I taught middle school, we all know if we have kids being middle schoolers, that is the one of the toughest ages. And the kids will come up and say hi to him, make a point. And I'm sure there are kids that make fun of him, but I mean there's kids that do that about everybody. But he is sheltered from that because he does have adults with him all the time. Um, but that was one of my biggest fears going out and people staring and or just completely rejecting him and how hardened it is. Hard. It still is hard. I do also have to remember sometimes when I go out without him, if I see like a power wheelchair and it's all decked out, I'm like, Ooh, let me check it out. And I'm like, Jamie, you don't have Liam with them. They probably think you're staring. Just, you know, kind of do it incognito where I'm like, what's that equipment? What's that new thing? And then cuz you know, it gets old when people are always staring or pointing. It gets really, really old. Speaker 1 (00:37:26): But I think we all do that. Like don't I, I, I wonder and I would love to hear from some listeners to commenting or whatever, whenever my son is not with me or whenever I see someone using a wheelchair because like when you're part of the disability community, I feel like you're just part of it. Right? It's, I do not like, I do not discriminate my love of people with disabilities. Like I, I just, I just have this extra connection because of my son. So whenever I see someone with Down syndrome, I do the same thing. I'm like staring. And so it's almost nice to have Arlo with me so I can be like, hey, and, and so I think you must not be alone, but I feel like we probably give off a different vibe. I hope so. They can feel that like, oh yeah, they're part of the club. Speaker 2 (00:38:13): , I sure hope so because they're at times when I've literally done like a 180 at a wheelchair and I'm like, oh man. Or, but there have been times when I've been out and about if I haven't been with Liam, I actually go up and say hi and be like, I'm checking that out because of my son. Speaker 1 (00:38:27): Right. Speaker 2 (00:38:27): Um, where we are, it's like there's, where's the secret handshake? We need like the secret handshake or sign to be like, Hey, what's up? You know, we're family. We are. Speaker 1 (00:38:35): So Yeah. Speaker 2 (00:38:36): Yeah. A hundred percent. Speaker 1 (00:38:38): I know. And in fact, that reminds me of something you said to me ages ago because um, I actually got to know you when, uh, my husband and I are filmmakers. We did some early intervention stuff and I, I think it was, we were at the Air and Space Museum out in Chantilly and Liam was there. Speaker 2 (00:38:59): That was the second, that was the second time. Cause was at the ice cream shop the first time to watch trucks. Speaker 1 (00:39:02): Yes. And well you said to me there like, I think that Arlo might have been using um, a walker then. I don't remember. And I said something about how hard it is, but then I corrected myself because I was like, well Jamie has it so much harder. And I don't remember exactly what you said, but it was something like, we're all in this together. Don't even do that. Do you remember? Speaker 2 (00:39:23): You know, I get that a lot from people just because of how Liam presents. I mean you see him and you know that he's got some extreme medical issues and I'll get people, even typical people that will tell…  typical people, , um, people with typical kids, no disabilities. Typical even that word sometimes drives me crazy. Um, yeah, that'll say that. Oh but you do this, you know, and you do that. And I'm like, that is your child. If you are not constantly bitching and complaining to me, sure, come to me please. That is your child. That is your child. That's your heart right there. And you have different hardships that I might have that I might don't have. Like in school for instance, Liam does great in school and the schools are so great with him because he is on track to take us SOLs. You know, he uses communication device, gets good grades, behavior. (00:40:13): I don't have to deal with that with IEPs difficulties. Mm-hmm. , um, where a lot of parents that kids might not give the same feedback that Liam does, don't get the attention that Liam does. So I don't have that stress in my life. And you might have that stress. It's not, this is not, yes. This is not a competition. I hate that when people try, even in this world as parents, we try to one up uh, each other on who has it harder or just not complaining because someone else might be going through that. But we need to talk about these things. And if someone whose child might have a different type of disability does not understand if you're not constantly, and we all know, we all know the people that are always constantly woes me. Mm-hmm. , poor me, blah blah blah, constantly. I mean, we all go through that. (00:41:03): We all do. And there's nothing wrong with that. We are human and we all need people to pick each other up. But if someone's child or an adult's disability is different and they don't understand that you might need to vent about something, don't feel bad telling 'em that person's not, I shouldn't say they're not worth your time, but they need a little readjustment because we all we're, yes we are in this together. This is so hard. These are our kids, this is our heart. I mean, even people that have kids that are healthy all the time and then they might end up in the hospital for something at that moment. You know what, that is your heart. That is your child. And if you didn't feel bad or you didn't feel miserable, something's wrong. And as your friend, we should be able to talk. Now if your kid's get in a sore throat and you're going to the doctor's every week and saying, oh whoa is me. I feel so sad or I, I I can't deal, I cannot deal with that. And especially in our world, when our kids are going to the doctors so much, oh and we need to talk to each other when we need to vent. It's still hard. And there's certain things that are so easy for me with Liam, I'm trying to think of what they are. , (00:42:09): I mean he doesn't give me any attitude he has. Well okay, he does give me attitude. He thinks it's funny, but he, he can't act out obviously cuz he can't move the same way other people can. He's not running off. He gives me attitude about shows or if I don't change his shows fast enough. Or sometimes he knows I'm so tired and he just likes to poke at me for little things. And he has a noise he makes that's like nails on a chalkboard. I, but that's like the worst of my behavior with him. I don't have to deal with him running off. I don't have to deal with a child who might be violent. Um, I have, I have things obviously and everybody in this community has different things that we have to deal with. And Liam's never been hospitalized, knock on wood, since he's come home. Yes. My home can be like a hospital sometimes. Yes. I don't sleep, but many of us don't. And it's not if I can't take some of your burden off of you by you talking to me. Whereas sometime you might, I may need to talk to you. I mean, or then we're not all the don't, that should not be the case. That's not, I guess I'm, I'm telling you right now, as you already know, after so many years that person's not your friend. Speaker 1 (00:43:22): . , Speaker 2 (00:43:24): Sorry. But yes, we are all in this together. We should be at least we should be. And I find most people are, most of us are. Speaker 1 (00:43:32): No, you're right. And you helped me early on and you helped me see too, like when we talk about accessibility, you know, someone like Liam needs accessibility for his wheelchair. He needs accessibility for his learning and his I gaze equipment. And then we have people like my son who accessibility means a playground with fences because he does run off. You know, accessibility means locking ourselves into the house because he'll escape. You know, it's, it's different and every family is different and yeah, some, sometimes those could be those violent behaviors like yeah that that it's a different kind of struggle that that each of us face. And I think that the stress of it though is very similar. And I think that PTSD that we have and that ongoing grief, right for like every milestone that is joyous for most families with non-disabled kids brings with it a, a pretty significant level of grief for families like ours. Speaker 2 (00:44:40): It's funny cuz I was just texting with a friend yesterday about a cake for one of her son's birthdays. But she was telling me how she doesn't typically celebrate her kids' birthdays. Her oldest daughter has a lot of health issues and she's got two younger ones. One's just turning one and she's like, don't, don't judge me. I might be a bad mom. I don't typically celebrate 'em but I'm trying to be better. And I just let, I just stopped and said wait, hold up birthdays, milestones. Even when we celebrate them, for most of us it's like a knife through the heart. Mm-hmm and our milestones are different. But at the grief that can still come because everything that is different about our lives, his life is like, comes to the surface at that time. And I told her, I think this is pretty common. This is really common in our world And don't, and I've told her it's only gotten better for me as Leo's been like more laid backer. (00:45:32): I don't feel like I have to keep up with other people. Or he's like, eh, like his birthday is like let's go do smores with some friends outside and and I'm like this is beautiful. This is perfect. Mm, this is perfect. So relaxed with friends that are like family. So nice. So yeah, all the milestones or the times for me … it'll be at times I'm driving home cuz the PE teacher played sports love sports and I'll randomly drive by a soccer baseball field. Mm-hmm and it is like I got sucker punched, it comes, I could be having a great day and then I see it just for some reason at that time was, it doesn't happen often, but it just happens. Whereas just like I lost, I can't breathe and I'm not having a panic attack, but you just get sucker punched and adjust these little reminders that we deal with. That's just how different things are. I mean, I mean no one's owed health, no one has owed anything in this world. But when it's the person that you love the most and that you would do anything for, it hits so hard. Uh, such a reminder just how different things are. Speaker 1 (00:46:39): It is, it is one of the biggest struggles I've had and, and it's less so now, but is watching my nephews uh, and nieces. Right. Like those, those things that my brothers are going through with their kids and my husband's brothers. Yeah. It's like, oh yeah, that's different. And then the lack of understanding from family, you know, those people that have been such a close part of your life, your whole life understand it the least. And I think that's why I lean on the friends that have made like you and and some others that we mutually know. There's people really close to you who are your family of circumstance. Right. I lean so heavily and even though we don't always have time to talk to each other, as much as I hate social media, you know, that that's often our connection because our lives are so busy we can kind of follow each other and feel connected just by looking at pictures. Speaker 2 (00:47:35): Oh a hundred percent. So I have a nephew who is six months younger than Liam. Mm-hmm . It's pretty much he's doing everything that I had dreamed. The sports just being the active and it was, his birth was really, really hard cause that was one of the first kids after… Also and being a boy and then just watching him grow up just has been hard cuz it's that reminder. And he is just a sweet kid. Just a sweet boy, sweet boy. And some reason we've always, even as a baby, like we got along. Like I would hold him and he'd sometimes get annoyed with my mom and want me where I'd be like, what is going on? You know, I'm like this is so, so hard. Um, yeah. And my brother and sister-in-law are great. They're wonderful. My family obviously certain people can't know the depths and they're our friends that I can just pour my heart out about everything cuz they walk my shoes. (00:48:33): But my family is so lovely. Um, and they just, they've taken me at my own pace with things. I started recently started ADHD meds where I was able to talk to my brother and tell him for the first time just how hard it can be sometimes. And I feel, I do feel bad about that because his family is so beautiful. Like the oldest brother who um, I'm gonna brag a little, is a rower and gonna go to um, university of Penn to row. Yeah. And it is just Liam's favorite person in the world and is always so sweet to Liam. Um, my niece, the niece just so sweet. They came up last Christmas and it was just the best time. But also that's the first time I have thrown a ball with my nephew at 13 years old. Mm. Cause I was gonna be the high school coach and I was gonna take my son to all these sporting events and I was gonna do all these things with him. (00:49:29): I was gonna get off. Right. Um, and then seeing my nephew who is 13 doing ex, not exactly, but pretty much what I planned out was sports and doing things. And my mom going down there and watching sports. Liam hates sports. He hates it. He hates it. And he won't watch 'em with me. And it drives me crazy. Drives me crazy. So this past Christmas when they came up, I threw the ball with them and you know what, it was really nice. It was, it's hard. It's really hard. But being able to tell them …  my brother, how I felt before, not how I felt or just how hard it's been. And then to be like, okay Jamie, you can do this because you've let them know. And again, I am so blessed that when I told my brother, he's just like, I love you Jamie. (00:50:22): Um, we're here for you. I love you. Um, but I think of the times I've lost out with them and that also is, that's something I regret and where I want to now. I threw the ball and I wanna go see him play baseball. I, I, it's gonna be hard. And I told my brother that it's gonna be really hard and I'll probably cry the hell out the night before or the night after. But you know what, in that moment it's about my nephew and my relationship with him and being like, okay. Cause I think in the long run it's gonna be better for me instead of hiding in my little hole. And there are times I'm gonna hide in my hole. There are times I'm gonna hide in my hole cause we all need to put up boundaries. But I'm gonna do this. I'm determined to do this and to sit there and enjoy that and be thankful for what I have with Liam and to be super thankful. (00:51:13): Sometimes I hate being thankful be thankful for being able to have family that took me … I mean I've gone down there, I've visited, I've done things, I've thrown a football with my other nephew. But it was always easier cuz he was older. He came first and Liam adored him with the nephew. That was Liam's exact age. It was always so much harder. Yeah. But I'm, I'm gonna do it. I'm gonna do it before it's too late because I don't wanna regret that. And I need to, I I'm ready to. And I'm not saying for everybody that's not ready, especially in the first couple years … Yeah. Where everything is hard. It's, it's like you said grief. Grief is there throughout our whole life. Cause we did lose something. We lost our hopes and we lost our dreams and we're human. That's what I keep always saying, we're human It … there's nothing wrong with how we have felt. (00:52:04): It's just how we continuously to act on that. I might be mad at the world for this, but that's not my nephew's fault. That is not his fault. And of course if they were not so loving with Liam, it would be a lot harder. Yeah. I would be like, why would I waste my time? But that's not the case. I've got this amazing family. So, um, yeah, it's time and, and I think people will know when it's time. I, I'm sad it is 13 years later because while I can't do this with Liam, it felt so good to throw the baseball where I'm like, this is part of me that's been missing. And Liam loves basketball outside. Like we go around and we have to help him shoot and that's fun. But my sport growing up, playing with softball but getting out there and throwing that baseball, cause I haven't really thrown but actually going out there and playing with someone Liam's age thinking about what we could have been doing or what we quote unquote should have been doing. Cuz no, no we shouldn't be doing that. Like I said, it's not guaranteed. Nothing is guaranteed. Speaker 1 (00:53:01): I think it's amazing that you can talk to your brother and probably one day your nephew too, when he is old enough to understand, to explain why you needed time, Speaker 2 (00:53:11): You know, reality, me coming to my harsh reality with myself. Yeah. That he does take a lot of time, but you could make the time for one, one night down. You know, I don't really go away for many days, but you could, you have to make that time. And my, when we said I wanted to come. My nephew was just so sweet and excited about it. Or I'm like, yep, Jamie. It, it was the right thing. Speaker 1 (00:53:33): The feelings that we have are so complicated. You know, I, again, three children and Arlo's the oldest, so a 10 year old and an eight year old. There are things that they feel aren't fair and they don't understand. And, and I have to say, like we have conversations. I'm like, one day you'll understand. One day you'll understand why sometimes rules are different for him than they are for you. One day you'll, you know, one day. Right. And I think, I think that goes the same for cousins as well. Like they, they kind of get it and they kind of don't. And it's, it's just, you know, they probably get it more than we do or did. Speaker 2 (00:54:10): Yes, I have to say, because I do live with my parents and my parents give me so much support with Liam, but that has also taken away from so much time that my parents give to their other grandchildren. And they've got a bunch of 'em. I've got six siblings. I'm sure it's been hard on my siblings to not have that extra support. Just how understanding they have been of this situation and knowing that my mom and dad give so much to me and Liam and not taking that out on me or Liam. And that when my mom can help them where they're so grateful about that too, that right there from them blows my mind. Cause there was the longest time I felt guilty about that too. And I would tell them that and they'd be like, don't worry Jean. They'd blow my mind. And I'm just again, a blessed and I know how blessed I am from hearing about other people, about families that get upset or mad because grandparents are helping more with the child with say like someone like Liam than their kids. Overall, my family's been nothing but supportive. Speaker 1 (00:55:17): I think it's amazing and I think it's good that you're, you know, you're kind of pointing out the differences because you also have situations where family members don't even know how to deal with having, uh, grandchild, nephew, niece with a disability. So I think it all runs the gambit and our experiences are all different. I think it's beautiful that you're sharing how lucky your situation is in that regard. I also wanna make sure that we have time to transition Earlier. You're saying you, you know, you don't have any time for yourself. I think for a lot of us parents, primary caregivers, to a child with a disability who has a lot of needs, a lot of times we laugh at self-care because it's not really possible. Right? And if you do do it, you're sacrificing something else. And then you're dealing with that guilt and the guilt just eats away at you. (00:56:08): But Jamie, I have watched you over the years evolve from like milling wheat to all of these things. And so, you know, you gave us the background of, of where you were and adaptive PE which is amazing by the way, the, the, the way that life works out. That you have that background, but then you found something, didn't you, that that brought you joy. And I, I would like to hear about the evolution from how that started a little bit. And then I, you gotta, I mean the, the creations you're making, we are gonna plug what you're doing because you … people have to see the pictures. I am beside myself, so why don't, why don't I shut up and let you? Speaker 2 (00:56:52): So being home with Liam 24/7 not having constant help, it was petrifying to even shower sometimes. And I did not know hell the hell I was gonna keep doing this. I was like, how does anyone do this? How are they so calm? Is this just my child? Cause he hadn't been doing that at the hospital. So I needed to find something that I thought would be fun to do in the house, that would be mine. And I said, Hey, I'm, I got a book on bread and I'm gonna start baking bread. And I would just bake. And it turned into a way that, oh, I can thank people for their help. I mean, well and on everybody else for everything. I can't do much but I can bake, which I never did before. Liam. And I am not someone like with Liam, I pay attention to details. (00:57:34): But all my life it's been like, oh yeah, schoolwork, whatever. Mm-hmm. , okay, I'll get to this when I have to. But baking that fixation. Um, but it's like, okay, this is kind of fun because I would hold Liam at nighttime and we watched like all the Food Network cake decorating shows. I'm like, well why don't I try this? Yeah. That at that point, cake decorating didn't really come out too well. Um, I stuck with bread and I grew wheat one year and the growing the wheats real easy. It's just that you have to actually like take care of it. And I never got to it. And mice got into the garage and ate it. So I never actually ate the wheat. I grew surprised. I saw that I found milling flour cause it's supposed to be healthier and I wanted to do whole wheat and I needed something else. (00:58:15): So I start milling flour and making sourdough different types of breads. And then it just evolved into like cookies. So I stuck mostly with like cookies and little things or cupcakes. People seem to love my stuff. Teachers, friends, nurses, just everybody. Neighbor. My … my street, my neighbors are amazing too. Mm-hmm , um, always helping whenever they can. I have one neighbor that comes out every morning when Liam goes to school to say hi. And when he gets off the bus almost every day he'll come out and get Liam off and on the bus with us and other neighbors that used to. But Liam went to middle school so he gets home too early now where the three boys and their dad will come out every day to say hi, hi to Liam. Even if it's only two minutes and Liam doesn't wanna stay out every day. (00:58:58): Just little things like that where I'm like, oh, you know, I'm gonna bake for people. This is a great way. And everybody seemed to love it. There we go. And then I decided I was going to do a hike for Make-A-Wish as a fundraiser where I had to raise $10,000. How am I gonna get people to donate? You know? And I probably didn't have to bake, but I hate asking people for money. Same. Hate it. And even for such a great cause where people were thanking me for doing this. But I was like, okay, I'm gonna bake for people. If they donate, I'm gonna bake them something. Occasionally I'll smoke a cigar. So there was a cigar shop that would have a big um, crawfish boil. And I talked to the owner, if you're in Virginia and you like cigars up in Northern Virginia to Tobacology, go to there, they're wonderful. (00:59:41): I was like, can I put up a table and raise money for my hike for Make-A-Wish? And the owner was like, of course. So I just did a whole bunch of cookies and things and overall I raised more than my 10,000. I had to do that day. But just with donations of course people were drinking, having a great time, but I'm just baking for everybody. And then, you know, people asking to buy. One time I sold Thanksgiving pies and I was like, oh, so covid hit and I felt like, I'm sure you did. We were prepared for this. I mean people whining about being isolated. I'm like training all my life. But I was like, okay. So you know, I just was like, maybe I should start a home base bakery and guess what I did? I'm, and my first thought was, okay, I'm gonna sell. (01:00:21): I love to make macarons and like drop cookies. I want that to be my focus. And so that's what I started off with is pies. 2022 came around and it was March. One of my friends that I had known from CrossFit was like, I want you to make my kids birthday cakes. I mean I liked making cakes but I did not like decorating them. I like to bake. And I was like, okay, you know the business with the cookies, it's all doing fine. I'll give this a go. So I made her cakes and I like to think that my stuff tastes really good. I like to use quality ingredients, attention to detail. Okay. I don't like to think it does. If you don't like it then I'm just not for you. No, I'm and I made her cakes and I was like, okay, I think I might be able to do this. So I started taking cake orders that were just kind of basic. She let me do whatever designs and one of 'em was covered in fondant. I'm not as big of a fan of fondant and it was a hot mess fondant. But she was okay with it. Um, and it was wonderful cause she was actually a registered dietician and we bartered at that point for her to help me with my eating with cakes. Yeah, I know, right? That's Speaker 1 (01:01:19): Amazing. Speaker 2 (01:01:20): I know. Sweet, sweet person lover. And then I just kind of started doing more cakes. People were like, oh cakes. And that's just taken off where I'm like, this is kind of fun. I mean I love my macarons, I love my cookies. There's not really the money in the cookies, there's not really money in any of this really. I mean there's some, but with cakes you can add on decorations or trying to start to make like fondant figures. I'm still torn about covering cakes and fondant because fondant, because I do see it as a beautiful canvas. I just don't like the way it tastes as much. There is a very expensive brand from Europe that I might try cuz I am big on taste. Um, I do love like my buttercream cakes where everything is smooth, crisp, clean. Oh, Speaker 1 (01:02:05): And I have to pause you because just recently you posted a picture of a buttercream beer pouring cake, uh, that looked like it could be from "Is It Cake"? And it was buttercream and not fondant. I, oh my God. Speaker 2 (01:02:20): Eat buttercream. Yeah. I love that challenge of trying to work with buttercream and making it something that people might typically do in fondant because honestly most people don't like to eat fondant. Um, Speaker 1 (01:02:30): Can you explain, not everyone knows like okay, what they eat when they eat a cake. So quickly explain the difference between fondant and buttercream. Speaker 2 (01:02:37): So there's different types of buttercream first, but I'll, I'll use one that's more of a egg-based Swiss meringue. So it's not overly sweet like you might get at the um, grocery store. Softer, lighter and done, right, just delicious. And then fondant, usually you'll have buttercream under fondant or a ganache, but fondant is that really sweet. It can be hard after it sits out a while. Layer of just like sugar. If that's on top, that is great for making fancy fun cakes. Mm-hmm. it is good for that, but for eating it's not as good. And like say for weddings when you can get this white cake that's all fondant or do different things, it can be beautiful. But if you want something that's really tastes good, it isn't beautiful, you can, it can be done in buttercream, it can be. So that's what I enjoy. And I actually, I decided I would, my business has been doing well. (01:03:26): I decided I'd treat myself in December to a class. There's a, there's a sugar artist who I've been following for years and I never could justify spending the money on it cause I don't like to spend money on myself first. Mm-hmm. and I do rely on others for a lot. But now that I've been selling cakes, class is not cheap. And for me to be gone for it's, it was local also. But me to be gone for most of the day for a week, that's a big, big thing with my time. But I got to the point where I'm doing fine business-wise. Scheduled it with nurses and my parents and got to go take a class with a sugar artist. Um, her name's Maggie Austin. Her cakes are gorgeous. So working on making like sugar flowers. So flowers that look realistic out of pretty much powdered sugar and water and maybe some egg whites that they call it gum paste. (01:04:16): So it's similar to like fondant. It's just harder and stiffer and just love that. So I've started to introduce the sugar flowers now in the past couple months. Starting to get some sales on that and trying to expand what I do with the sugar flowers for this elegant look. I can get lost if I can put, if my parents will sit with Liam or if I have a couple hours when he's in school. Um, or if I get up early or stay up late, I can put on some headphones and I can get lost in the details of the sugar flowers and focusing on that. See that's what I love about that. Where there's not a care in the world other than I gotta get this cake out the door to spend hours, immerse some sugar and make this beautiful object. It's just so stress relieving. (01:05:01): And if you know anything about me, I'm like the biggest tomboy. I don't think we use that word anymore, but that's it. I'm proud of it. I'm a tomboy . Hundred percent all my life girly things. Never until I started making these sugar flowers and someone gave me flowers, they'd be like, they're just gonna die. You know? I love going on hikes and seeing the flowers. Mm-hmm. out in nature, but like to have flowers in the house, I'm like, oh, I gotta keep 'em up. But now it's like I stop and I look at when I, for my birthday, I had friends gimme flowers and it's like I stop and I admire the beauty and the layouts of all them. And I'm just like, what is happening? It makes me slow down. That's what I love about that. So yeah, I'm trying to do more buttercream cakes that might have designs like my beer cakes probably not a shocker, but my um, bakery is called Sweet Gratitude Bakery because I did start this as a way to say thank you to people and that's still my mission. (01:05:53): And so I donate cakes now to a hospice group that will take them, they, they do work with children and also still saying gratitude where I'm baking for teachers or I'm baking for friends. And my friends have been amazing supporting me too. But I like to add on little extra things when they buy from me. But it's just a way I've just kind of got lost in my world. And then meeting a network of other bakers in this area that's allowed me to do something where I'm not caregiving. Even though I really only found this because of Liam. Mm-hmm. . Um, and I'm gonna check my texts cuz the nurse just text me from school. Sorry. Sorry. Thank you. As all understand. I know Speaker 1 (01:06:29): I might even leave that part in because everyone understands like that we are always on call. Speaker 2 (01:06:35): I was shocked that I've gotten this long actually with no real call or anything. But, um, oh, where do we go back to it? Oh yeah. So the, the bakery still like the neighbors that helped me. I love to be able to, I have samples or when I like tore a cake and I have little things which also brings me back to bread. I, I started following this wonderful person on Instagram. Um, and she helped me a lot with bread. But her motto with bread was rethinking Perfect. And this is how I really got into baking. Even though I obsess over my cakes and want them perfect. Especially with bread and sourdough. People try to plan out sourdough and they think they have this rigid, strict schedule and sure that does work great and maybe some of the most bread snob people can tell the difference. (01:07:21): But her motto was like, okay, we're gonna rethink perfect with this. We're gonna make bread fit into our lives and we're not gonna be bound to the schedule or what's expected of us when we're baking bread. If you make sourdough, you're supposed to like turn it, fold it, stretch it for so many hours, it's just feeding it. You're supposed to keep it on this schedule. And I was like, I can go with this motto with sourdough, but I also can go with this motto with life. Rethinking perfect talking to her about bread and baking and just making things fit to my life. This baking, this business is sure it's not perfect but why do we expect perfect or what the world thinks is perfect and baking's a lot like that. And being able to incorporate that into my life with baking with Liam, I said, this all just goes together and now if you order a cake for me, I'm not gonna be rethinking perfect . (01:08:20): I mean I want them to be beautiful, but when I'm baking like bread or I'm baking for myself or friends and things might not come out. But if you have like a design in mind, this is where I get can get hyper fixated on things. Mm-hmm. and just be like, okay, I gotta do this. But that's a different, that's a different ballgame. But everything in my everyday life, baking things for myself, for friends or to say thank you for people I need to step back and be like, wait, let's rethink this. And I just love how it's all come together. Also, Liam's room is right next to my kitchen. Can't really when he's home if I'm with him. But trust me, he does not like it if I'm baking or that's when he likes to give me attitude. No I sneak it in. So it just kind of works and it's, it's so fun to see the joy it brings to people even when they're paying for it. (01:09:05): The joy for their parties. Or say for instance like the surprise when you give the bus driver the cookies and they're not expecting that. And I'm like, it's just a cookie. But sometimes it's more than just a cookie. It's just that thought that you were thinking of that person. And that's what baking has been about for me. Also, again, my eyes wide open. What really is food about? What should food be about? Yes, we all use food for different things. A lot of times for me it's been stress eating, but it's also about relationships with people. We should be able to sit down and break bread with people no matter our beliefs. Yes. Especially nowadays it can get hard but I think that we can all find some common ground through food. Speaker 1 (01:09:46): You think about food like you have to eat to survive or at least have sustenance. Whether it be using a feeding tube like we have to eat like right. It's part of our lives multiple times a day. And when you can do it together or share a creation you've made, like it makes it that much more special and important. Like why not make those moments beautiful. Speaker 2 (01:10:11): And which is also interesting cause like you said, if you have a feeding tube you need that. Liam, he loves to taste and so he'll taste my stuff. He has like, uh, he, he loves salty pretzels. He has a certain brand of pretzels that he likes and that is it. He wants that pretzel and he wants to taste that you can't fill in with anything else. It's pretty funny. But he loves helping me pick out cakes, designs, picking the flavor, surprising his nurses with goodies. He loves that and he could care less most of the time. Oh so annoying. My godsons baked for me the other day and he wanted their cookie. It was good. And he did not want any of mine ever, but he ate their cookie. He tasted their cookie and I was like his little stinger, which was, it was actually really great. It was so cute. It was so cute. I was like cute little stinker. But he still finds that fun in like his design. We always do a fun design for his birthday and people will come have it and he wants to give people loves to give people Valentine's day, I gotta make cookies for all his teachers cause he wants to it to him. Aww. (01:11:14): He's not gonna taste it cuz he wants a salty pretzel. And so it's, it's just that it bring so fun. It doesn't take much to me happy as you probably tell. Speaker 1 (01:11:26): I, but this is the thing that I wish that more of us would realize is that we don't have to have an all-inclusive vacation to the, to The Bahamas. Like we can find joy in the every day in the imperfect Speaker 2 (01:11:41): Erin. We don't have to, but it sure would be nice right now , okay, Speaker 1 (01:11:44): I'm not gonna lie, that is such a fantasy of mine. Speaker 2 (01:11:51): Like, oh Erin Speaker 1 (01:11:52): Thank you for being honest because you know as, as joyful as cooking could be, I would love for not having to cook for a week or do laundry or Speaker 2 (01:12:01): Right. Oh vacation. Speaker 1 (01:12:04): Oh, Speaker 2 (01:12:05): Oh I know. But yes, yes. We have to choose to find the happiness and we can't always find it. And it's not gonna be like that. Cause I want that damn vacation. I would love that vacation all inclusive on the beach. Oh yeah. I'd take time off from baking easily Speaker 1 (01:12:22): . But the reality for so many of us, right, and this is something I mean you struck on is as caregivers you're working as a caregiver but then you know, you're either sacrificing an income or sacrificing time with your child or sacrificing, you know, having other things like our child is not a burden, but there's a financial burden to having a child with a disability. And a lot of times it comes in sacrificing income and making money because you cannot, you have to have a flexible job. You and I both have to be able to look at our phones right now and if the school calls we gotta be able to say goodbye. Yeah. And you can't have a nine to five job that does that. And so you know what you've created for yourself. Jamie, it sounds like not only is it an outlet, but it's also income. It's also kind of a form of self-care. And it sounds like joy, I mean is that Speaker 2 (01:13:23): It is overall. I'm trying to find that balance, like you said also sacrificing time. Cause I, I am a people pleaser and when I get requests for orders I wanna take everything on. I took two last minute, ones last week and just, it wiped me out. I do give my time, I give my quality time and I find sometimes if I'm like, okay, you know I might get snippy with Liam if he wants something or I'm like, you gotta give me two seconds Liam. Um, but this again, it's very typical but also, you know, I'm on my feet doing it the whole time. It might take away from, cause I loved to work out where I was on my feet or I had to give up some of my workout time. Oh it sounds so tough. I have to give up my workout time. But I love that. (01:14:04): I love that for me. Mm-hmm , it's get, cause I don't get out much but I go to the gym, I'm around other people but that's also very therapeutic for me. Or even say just watching a show, you know, curling up and watching Netflix when the nurse gets here at 9.15, 9.30. But if I gotta stay downstairs and I gotta bake cause I took on those orders and you know, it takes away from that or for myself care for myself or I'm tired and that's not like, again not a complaint, it's all now finding the balance of being like okay, I need to only take this order or I can't take last minute ones because I need to be able to plan everything out. So if things go wrong, I at least have time to make up but I'm not rushing cuz I'm not gonna put something out that I'm not proud of. I mean I do with things, if I mess up and it's still edible for neighbors or family, I'll be like, hey, this is not selling quality. And they're like, oh we have no problems even you're non-selling quality, you know, I'll give that out. No problems whatsoever. So that takes also though from my time from Liam, my time from sleep, you know, with my mind starts racing about that or this order which went Jamie, it's an order, it's a cake but I'm making someone's event special. So I do, I take that very seriously. Speaker 1 (01:15:22): I mean you're telling me all of this, you mentioned early on how important it is that you outlive your son. Yeah. And so I'm hearing a lot of, you know, watching your macros, you know, working out. Yes. Jamie, what do you do to take care of yourself to make sure you know you're in the right mental and physical space for yourself and for Liam? Speaker 2 (01:15:45): First thing I do is not beat myself up. if I don't do what I think I should be doing to take care of myself. Cuz I used to do that, oh no, a bad day and I just sat down and ate a thing of ice cream or all my chocolate chip cookies. First thing is not being hard on myself. And that's probably only in the past two years where take a deep breath and let it go. It's done. Cuz guess what? I needed it in that moment. When I start beating up on myself for everything I should, I think I should have done. It gets worse first thing, be nice to yourself. Second thing is I love to lift weights. Love it. I've always been into sports. I don't really like cardio. I probably need to do some just for, you know, general health. But trying to build more muscle for my bones, my strength. (01:16:36): And so that when I'm in resting state, cuz the muscle is going to burn more calories, more muscle. You have, you can burn more calories. So when you're not doing anything, you're gonna burn more calories with muscle. I still have like from caring from Liam, I have hip issues right from lifting them for so many years where I knew I was doing it improper. But it keep, he can't support his own head. You know, his neck would snap. So it's not like someone who has low tone, he has nose tone. I knew it was wrong, but guess what, what am I gonna do? Um, we do have a lift now, but I still have a buildup so it makes that harder. So I go, I lift, we'll do a little cardio. I used to go five to six times a week, but as I keep getting older, I'm now four times a week. (01:17:14): Cuz guess what rest is important. And I do work with my friends, still my friend, the dietician. Mm-hmm . So I went into a calorie deficit last January for three months where I lost some weight. But then with females we're so often we're in calorie deficits, we're always trying to lose weight and that's not healthy for your body. So since like last March, I've just been maintaining my weight. Uh, not where I wanna be, but you know what, that's gonna build me up and my body needs that a break from trying to always be in calorie deficit. And sleep will be better, rest will be better. Muscle will build. So February, I had my birthday in January, which I celebrated que um, happy birthday. Thank you. It's been a week. I've been in a calorie deficit and when I say calorie deficit, when working with this woman as a female, she had me eating up to about 2300 calories a day. So my calorie deficit right now is starting at like 2150. Speaker 1 (01:18:06): I'm so glad you said that because I think so many women still think like 1200 calories. Yes. Speaker 2 (01:18:12): No, you Speaker 1 (01:18:13): Can't live on that. Speaker 2 (01:18:14): I am hoping not to get below 1800. And it's not really about losing weight. I don't care about the number. I wanna feel good. I love being athletic. Sure. I wanna tighten up, get a little bit more muscle, be more athletic looking. But it's also about, this is when I feel my best with Liam and stress. If I need to stop this sooner, we will. And there's also times when, guess what, if I'm doing this for three months in a calorie deficit, if I wanna go out and have a piece of cake or do something here and there, I'm gonna do it. If this is not all or nothing, but I wanna be healthy and I wanna be strong and I wanna be well fed, I do not wanna be hungry. I mean, I have my background in health and physical education, but I'm like, no, please love yourself first. (01:18:57): Love yourself first. And that's hard. And it's hard to eat well, okay, for some of us it's not hard to eat. , , stress eating what I'm sure as many of you all can relate to, right? Oh man. But I also find for me, when I do pay attention to what I eat, I can keep my stress eating, um, better under control. And then when I do have my time, especially right before my period when I need that chocolate or I need that, guess what? I did it, my body needed it. And the next day I'm back on track. Which has been a big change because when I would be mad at myself, I'd mess up one day and it's not even messing up, I'd just have a day where I eat more and then I'd feel bad and the next day I'd get so mad at myself. (01:19:38): I'd keep eating. Yeah. And when I say keep eating, I mean overindulging because we need to eat. I'd keep with the chocolates, I'd keep with this, you know, I'd keep eating the ice cream or the cookies. It was counterintuitive. So just be easy. Especially, especially if you're caring for someone else. I mean, we are so tired. We are so burnt out from everything. And being in a calorie deficit and working is extra stress on your body when you need that rest day. Even if it wasn't planned today, I was not, I was gonna get up early, go to the gym, which I love to do. But my over with the baking, my sleeping had been horrible. I woke up this morning and I was like, I, I can't do this. I want to, I really want to for my mental health because I need to get out. But in the long run for my mental health, this is going to be worse. Your bo our bodies are not recovering and rest is more beneficial right now than a one day. As long as I can keep my eating on track, it's gonna be okay. And in the long run, this is gonna pay off because my workout tomorrow, which I'm itching to get to, it's gonna be better. It's gonna be better. Right. Speaker 1 (01:20:50): It'll be better. And I think too, it's important to remember that the situation that we're in, a lot of times there's not time for ourselves. And so sometimes we do turn to food or what we consider laziness because we are just tapped out. And that's an easy fix that gives instant gratification. Speaker 2 (01:21:11): Oh and it taste so good in that moment when you get, you eat that delicious food. Just the hormones, the rush. I love that. Sorry, . Yes, Speaker 1 (01:21:20): I get it. Speaker 2 (01:21:21): Oh, I'm down and give me some good sweets and I just get a boost. Speaker 1 (01:21:26): Oh, you're making me hungry. I have one last question. Okay. No, no. Cause we're we like, we've gone and I, I've, you've got me, I've got other ideas based on what we're talking about. Jamie, I think we should do a self-care episode, an A D H D episode, a nutrition episode. But before we go, I want you to plug your business because you mentioned the name, but tell us where we can find you. Okay. Tell us, tell us all the things. Speaker 2 (01:21:53): I'm super bad about that too. About plugging. I'm trying to get better with marketing because I'm like, if people want something they'll come to me. Which obviously you gotta know. Um, so I do have a website, but you can't order on the website. It's not very good. I probably should up do that website, but the easiest way to get in touch with me is on instant gra uh, instant Gratitude in um, instant uh, Instagram. Can you tell I'm tired. I Speaker 1 (01:22:17): Can. Um, Speaker 2 (01:22:18): It, my name is just sweet underscore gratitude underscore Bakery. It's pretty easy. Sweet Gratitude Bakery. And then Facebook, I'm Sweet Gratitude Bakery. Also, I also have email, sweet dot gratitude dot bakery gmail.com And those are the best ways and you'll see my progress there. And I, I just keep, I think this year's gonna be really good with what I'm able to create. I think it's gonna be a lot of fun seeing my growth cuz even in the past couple of months, just even like the quality of my pictures, the quality of, not the quality but just the designs. I'm willing now to be like confident in my skills to do Speaker 1 (01:22:57): Well. And I mean, like I, I used to live in Virginia, I had relocated and I can't buy anything from you until I visit. But I love following your pictures. Thank you. The pictures are amazing. Speaker 2 (01:23:12): Thank you. I just made a bourbon cake that I tell you if you look bourbon, this cake, it was old fashioned cake. I do need to up the levels of the bourbon in it. It was, ugh, like I just, I could get lost in that cake. I don't drink much. I mean I enjoy a drink here and there, but just the depth of the cake and the elements of it where it's just like, oh Erin. Speaker 1 (01:23:35): I bet like a sweet smokiness almost. Speaker 2 (01:23:38): Yeah, I did not put any liquid smoke in this one. There was that option, but you know, it's like the cake has like an orangeish flavored profile to it. And then there was a um, cherry bitter preserve, which I'm gonna put in a middle, which I'm gonna put more bourbon in next time. And then it was a brown buttered, a brown butter buttercream, which has a caramel. But I'm also gonna make that a stronger bourbon cuz if you're drinking an old fashioned, which I cannot drink cause it's too strong for me. You want your bourbon taste. So it just needs a little bit more. Okay. Maybe a lot more bourbon in it. But the flavor profiles are all there. And Erin, if you come down there girl, we can sit around, have a drink and I'll make that cake or cupcakes and we can hang out. And you don't have to pay for that because that's what I like to do. The gratitude, I mean, Speaker 1 (01:24:24): Yeah. Speaker 2 (01:24:25): You know, you can buy something else, but let me make something for you. That would be fun. Speaker 1 (01:24:28): I'll buy your Macrons cuz I have a Macron addiction, so you know. Oh, perfect. Yeah. Perfect. . And now my mouth is watering and oh, Speaker 2 (01:24:37): I'm like, oh, I wanna go eat sugar. No . Speaker 1 (01:24:41): Well on that note, we can go do that. Thank you listeners for joining us. We're just getting started with this podcast and cannot wait to bring you more. Please rate, review and share us and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.    

One of the hardest things families go through is when something seems wrong with their baby or child. When we envision becoming parents, the hopes and dreams we have usually do not include a disability. Socital norms focus so much on "healthy" babies that getting a diagnosis of intellectual or deveopmental disabilities shatters our preconceived notions of what being a parent is.  Then there are rare diagnoses. The ones that have no name. The ones that might require extensive testing. The ones that don't have networks of support like autism and Down syndrome do. So on top of the parenting curveball you've been thrown, you're left with even more questions and almost no peer support.  That's why we had to talk to Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the Vice President of the Smith-Kingsmore Syndrome Foundation. And of course, she is a parent and a caregiver. She's going to tell us about how her own odyssey with her youngest son Charlie brought her to us.  The Odyssey: Parenting. Caregiving. Disability. Click here for more about the Center for Family Involvement's Genetic Navigator program.  For more about the Center for Family Involvement: https://centerforfamilyinvolvementblog.org For more about the diagnostic odyssey:  https://centerforfamilyinvolvementblog.org/2023/01/03/finding-your-way-in-a-diagnostic-odyssey/         TRANSCRIPT:  Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, creator and host. The Odyssey Podcast will explore the unique journey we're sent on when a loved one has a disability. I started down that path 12 years ago when my first child was born with Down syndrome. Even though it's the most common chromosomal condition diagnosed in the United States, we still know so little. And at the time, as a new parent, I knew nothing. And so my journey has brought me here. Working with the Center for Family Involvement at VCUs, Partnership for People with Disabilities. We provide families with emotional and informational support. Our podcast digs deep into the joys and hardships we face. We're going to celebrate how amazing the odyssey of parenting, caregiving and disability is. But we're not gonna shy away from the tough stuff either. One of the hardest things families go through is the diagnosis itself. Parenting is portrayed a certain way in our world. So much focuses on the healthy baby. So if anything with a baby or child strays away from our society's notions of normal or healthy alarm bells go off. It shatters our preconceived notions of what being a parent is. Then there are rare diagnoses, the ones that have no name, the ones that might require extensive testing, the ones that don't have networks of support like autism and Down syndrome do. So, on top of the parenting curveball you've been thrown, you're left with even more questions and almost no peer support. There's help though. A new statewide effort is helping Virginians navigate and access genetic services. The Virginia Department of Health and the CFI have launched a genetic navigator program to provide support at no charge to families in collaboration with our regional genetics network. If you need support with genetics or anything else relating to this odyssey we're on, you can call or email our helpline. All of that information is in the show notes. You should also keep listening because today we're joined by Sarah Lepore. Sarah has a Master of Science in Nursing, and is a board certified neonatal nurse practitioner. She is also one of the founders and the vice president of the Smith-Kingsmore Syndrome Foundation. And of course, she is a parent and a caregiver. She's going to tell us about how her own Odyssey brought her here today. So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey? Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up. He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician. Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician? Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent. And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go? Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing. Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list. That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs. Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off. All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing is something that families should be consented to. Um, it shouldn't, you know, some people don't wanna go that route and that's, you know, totally their choice. You know, I, as a, um, a nurse at this point, I was, um, I was still a nurse. I was in grad school getting, um, my master's, um, and I, um, really wanted to find out all the reasons why like I needed, I needed to know the answers. So we did go the route of the geneticists and we had our first appointment about four months later. Charlie had a microarray done, a chromosomal microarray. And the first, um, test that result we got back from the chromosomal microarray showed that Charlie had a micro deletion of a gene called a U T S two or OTs two. Um, and that gene was, was recently, uh, discovered and there wasn't a lot written about it, but over the course of a couple of months, paper started popping up. And as I'm reading, um, about this, um, genetic syndrome, I'm finding that almost all of the cases RF kids with small heads or microcephaly and Charlie had macrocephaly or a large head knowing that that's kind of a major difference in development. I wanted to question, I questioned like, maybe this isn't the right diagnosis. So I did some research and I reached out to some of the, um, doctors and researchers that have written articles on OS two. I shared with them Charlie's genetic diagnosis, um, sheet from MyChart from, um, from our hospital. And, um, you know, waited. I emailed and waited to see if I'd get any responses. And sure enough I had two, um, experts and s to respond back to me. And they said that they would recommend Charlie getting whole exome sequencing, that they did not feel that, um, s two really fit Charlie, um, and that we should continue to seek out a different diagnosis. Um, meanwhile, I, um, with another, um, parent, I'd started a Facebook group frauds too, because there was nothing out there. And again, I wanted to connect with people. Um, I had a lot of friends, uh, a couple of friends, not a lot of, couple of friends that had kids with Down syndrome and I had attended some of their, um, community events and the, like, it was just amazing to me to see this community come together. Um, and, you know, we always, we wanted to participate because of that feeling, but like, I still, you know, that wasn't Charlie's diagnosis. So finding our people was really important to me. Um, and so we started this group, um, and, uh, that group has really grown and since, um, over the years I've kind of transferred the, um, leadership onto other families. Um, and we continued our, our, um, diagnostic odyssey to try to find, uh, the right diagnosis to fit Charlie. At the time, whole exm sequencing was not being offered. It was like in the beginning research stage, there were places across the country that were starting to do it. And you know, as I'm trying to figure out can we get this done, I'm hearing back from our team at UVA that they're not offering it yet, and then they're only offering it if insurance is covering it. And at that time, our insurance was not covering it. So again, I went out on to social media to try to see what I could do and just reaching out to other parents across the country on what their experience has been. And I found out that, um, the lab, gene Dx was running these tests for, um, not free, but they were, um, at least trying to bill your insurance and then they were rebilling, um, and kind of running, like doing the fight for you so you didn't have to do all of that. And when it came down to it, by the time we finally got it done, our insurance, um, and Gene DX ended up covering it. So we didn't have any out-of-pocket at the time. It was a $28,000 test. Um, it's, it's much more affordable now, but it's still, it's not, um, free, um, to everybody. And, uh, and so, you know, accessibility, um, was a big issue for us and it took over a year and a half to get the right testing done for Charlie. But then we got the whole XM sequencing and it came back normal. And so of course I was a little bit disappointed, you know, we went through all of this and we get this test that's normal. But when I say normal, what it had was a, uh, variant on the gene mTOR that was unknown, unknown significance. So what I was told is it's normal. You're gonna, there's always gonna be a gene of unknown significance with a variant that happens on everybody if normal. Okay. I ended up reaching out to, um, the same doctors that I had talked to, um, previously about OTs two syndrome, just to kind of pick their brain on everything. And at the exact same time that this was going on in the background, another Dr. Lori Smith, discovered a child who had a variant on mTOR, and she actually published a paper on it. Her and her colleague Dr. Kingsmore, they described in the literature a mutation of the gene mTOR that, um, caused some symptoms that were so similar to Charlie as this information is all kind of coming together. Our geneticists at the time reached out and said, Hey, we're gonna ask the lab to rerun it, rerun your test. Which when Gene DX reruns your, your whole exome sequencing, they don't actually need another blood sample. They can just rerun it against their database. And when they rerun it against their database, we again got back variant of unknown significance. All right? So we've now had it done twice. There's this variant of unknown significance. There's this paper that's been written about Smith Kingsmore syndrome, we yet to find anything out about this. And I thought, okay, I, I kind of had closed the book. I was like, all right, Charlie's just unique. He's rare. I, I'm not sure what we're gonna do, but I'm just gonna move forward with what he needs, which is the therapies to help him meet the milestones that he's, that he's able to achieve. And to just get past that point of grieving the like why and what, and move forward with, okay, we have to have action to make things better. Um, so we kind of threw ourselves into therapy. We were already doing a bunch of therapy and just rolled with what, what we needed to do to, to really help Charlie be the best that he could be. I'm gonna have you pause there because you mentioned the grieving, right? And you know so much here about all the things and, and so many families like ours, like, we have to go into this mode where it's research and advocacy and research and advocacy and fighting for this and insurance and paperwork, and it's a full-time job. So I wanna pause and I wanna know at this point, you know, you are going through all of these things and so how are you at this time and how is Charlie at this time? I mean, at this point where you are in the story, can you tell us how long the journey's been and how you're holding up? And I wanna know about motherhood in these conditions because I know for me, having my oldest have a disability and having two younger siblings, we are robbed of so many experiences being parents that it, it just sometimes feels unfair and there are a lot of emotions that I feel like we brush off. So I wanna know where you were at this time emotionally and where your family was and how you all got through this while you were doing all these things on top of being a mother, on top of being a professional. How were you? Um, well, you know, it was, it was a difficult time for me for sure, and I was in therapy. Um, I, that was one of the things that I did for myself to kind of work through that grieving process of, um, you know, grieving what, um, what I expected out of the pregnancy, what I expected out of my newborn, a period. And that, that really helped me. And I, I worked through, um, with my therapist, I worked through, um, that grieving process. Um, and, you know, I just started trying to take better care of myself and also taking, you know, really kind of putting myself, really putting everything I can into helping Charlie. And by doing that, I, that actually ended up kind of being like therapy for me because I, I was able to put aside the, we can't figure out the why, but I actually can do something to, to help. So this was about 2015 was when we had the second whole exm sequencing result come back as variant of unknown significance. Charlie was four, almost five years old, he was in school. We were seeking out, trying to find a diagnosis, a school diagnosis for him where he could get the services that he needed. So we went back to the developmental pediatrician with some of the concerns that his teacher and I had, I really was seeking, you know, is, is seeking out, is this autism, is Charlie, is he autistic? And, you know, our first, um, visit, our doctors weren't too sure, but after about a year, you know, his, his signs of autism really did start to show. And so he was diagnosed with autism and that really helped us be able to work with a specific i e p team at, at his school and get him the services that he needed to. Um, but you're right, Erin, it, it was like a full-time job and you know, they're doing that on top of working full-time. At this point I had graduated, I was a nurse working as a nurse practitioner, really managing my child's day-to-day life. And this therapy's on top of that. There was a time period, o o over about two and a half years was when Charlie was getting 20 hours of therapy on top of school. So outside of his school hours, 20 hours a week of therapy. You Serious? Yes. So we, How, how did you even fit that? Cuz I thought a few days of week were a lot like how did you fit that into your lives? So every day he had speech, P t O t music therapy. He did the hippo, uh, therapy, horseback riding. And then on top of that we had a b a. And so our a b a therapist was here, you know, for hours in the afternoon and evening. And it really, um, for us, ABA was the right choice then. It, it's not the right choice for every family. And you know, I totally respect that. But it worked. We had a really wonderful, um, ABA specialist and it, she connected us and with Charlie and really helped me as a parent manage some of his, his behavioral challenges in the home, um, so that I could be a better parent to him. Uh, I got just as much out of it as he did so did, so did my husband. It was really, um, a wonderful experience for us. So yeah, I mean that was kind of where we were at. We were like, all right, well we have to just really try to help Charlie be the best that he can be. Um, and Charlie was such a trooper and he, like, he really worked really hard in therapy. But, you know, my mama heart was still very sad because we, he, he mis he ended up trading out play dates for therapy dates and, you know, over time not having those play dates , I realize that now, like he, you know, he doesn't have the, the same play skills and is that because we ended up having to do all this therapy? You know, I try not to blame myself because I do think we've done the best that we can do given the circumstances, but you know, it's really hard as a parent to, to not second guess like, did we do too much? Did we not give him like the normal things that he could do? And so, you know, he, I I still feel like we did the best we can, but it was, it's been a journey that's for sure. And wouldn't you say, I mean, in my experience, because it wasn't 20 hours of therapy a week, but I did find myself with my son taking his sibling to go to Aqua therapy and to go to all these speech therapy and I, I just, I mean I found myself getting angry, but then I also think about societal constructs and the medical constructs where really these therapies, and that's the beauty of early intervention, should be coming to the playgrounds, to the cafes. Um, so the therapists can work with our children in these settings that are natural instead of a clinic or even in the home all the time. Um, and helping facilitate some of the conversations and playing I, which I mean, again, our societal constructs in our insurance system does not really allow for that. Cuz you have to fit so many people into a day in order to get paid. But I just feel like it's, it's not a failing on us as parents. It is a failing on the way that our system is set up and our poor kids. There's this complex that they have to be fixed and um, I, I don't know, I just find it really difficult that in, in this day and age we haven't found a way to make it easier for them to get what they need but also be a child. I totally agree with you on that. We had a physical therapist, um, Charlie's long-term physical therapist in through early intervention and we stayed with her private um, until he was eight and a half. She would take him to the park. She, we would go to the park and she would try to, you know, if a child would come over she would definitely try to do that. But that was far and few between like that just didn't happen very often. Sarah we're going all over the place here. So let's go back to the testing and where you were with Charlie. I think you said it was 2015? Yes. So you know, like I said, we had kind of moved on from the why and what, and we're just focusing on what we could do to help. Um, and we were sticking with our appointments, you know, our yearly genetic geneticist appointment, our yearly developmental pediatrician appointment. And we just happened to be super lucky that it's very interesting story. But one of the specialists that I had reached out to for OS too emailed me instead of the UVA a geneticist about her paper that she was writing on OS two. And so I forwarded it to our U V A geneticist at the time and she said, let's, um, you know what, it's been a while. Let's see if Gene DX will re-look at Charlie's whole exome sequencing. And this was 2018 and a couple months went by, I didn't hear anything and then I get a phone call, the uh, genetic counselor said, Charlie's whole exome sequencing test has been changed to, from a variant of unknown significance to a variant of causing pathological disease. He sent me the report and there was reference to Smith Kingsmore syndrome, which I had at that point. I had already read the article that had been published, um, which it was, you know, only published a couple years prior and it kind of matched Charlie, but still there were some differences. So, you know, I was hesitant to like fully accept the diagnosis and wanted to continue to reach out and see what we could do. So, um, like I had to do from the beginning, I continued to reach out to these specialists that I had met and I mean I was lucky cuz I know that families have emailed specialists before and that they don't respond because they're so busy. I get it. They have their own patient population or the emails just don't get through to them because in, you know, big hospital institutions, it's hard sometimes to reach them. And I think we just got really lucky. And again, this doctor that we were, um, that had been corresponding with in Seattle, she said, yes, this Charlie does fit that and there's a lot of new information coming out about uropathies, which S K S Smith Kingsmore syndrome is an M enteropathy. So, you know, I think you're in the right, What is an M … what is that? And then no, it's ok. And actually I you know, I think it would help if you told us some of, uh, the symptoms as well. Um, Sure. So, um, Charlie has a variant on the gene mTOR. So the gene mTOR is on a pathway that helps our cells and our body communicate if there's a variant, it can cause the cells to change and grow differently, sometimes rapidly. Um, and so because of that, it can cause different symptoms like large head size, large brain size seizures, um, global developmental delay, autism intellectual delay, and there's some other like hypotonia, focal cortical dysplasia. And it can cause some pretty significant changes in your M R I. And I haven't mentioned this to this point, but Charlie had had an M r I already, so we had some information about his, um, brain abnormalities that looking at it at that early prior to having the diagnosis of sks, we were told, well, there's no genetic picture that matches this yet. And that's the thing about genetics is we got told a lot of it hasn't caught up with you yet. Like there may be something later on, you know, and I think there's a lot of families that kind of sit in that window of waiting to, for the diagnosis to be discovered are like, people are hesitant to say it's this one person has this thing. Like they wanna see that there are multiple people having the same symptoms with this genetic variant. So we, we had our diagnosis, I had a doctor that confirmed it, and then I went back to social media trying to find people that I could connect to and I did. And um, I found a Facebook group. There was like 30 people on it and I started reading and I started sobbing. I mean that was like the, the pivotal point for us. It was like these were our people, these, these families are going through the exact same thing we're going through. Um, our, the pictures, I was like blown away. Like my son looks like these kids, like they could be siblings, um, even with different hair color, they had so many similarities and um, you know, it just like, I was happy and sad and had so many emotions. Um, but then the balls just kept rolling. Like people were motivated. We found that there were doctors that were motivated and we were able to connect with these specialists that, um, were outside of our state. And luckily we were able to travel and, and meet these doctors and other families who really wanted to start a, uh, foundation so that we can raise awareness of our small rare disease. Because living the life of, of trying to get a diagnosis for an ultra rare disease is such a long, painful journey. And if we can help others get that diagnosis earlier, then we're cutting years off of the, of that pain for them. And now we know there are babies that are getting diagnosed because there's more literature about s K s. I like to think that our foundation has had a part to do with that because we've been pushing to put information out there about Smith-Kingsmore syndrome. It, it feels like, had there been more early on with Charlie, like with the larger head size in and of itself and what you saw, had that been associated then, do you, I mean, little things like that could have cut that journey for you down so much? No, Absolutely. And I think, I think now in, in 2023, um, it is because we, we know like genetics has already advanced so much in just this short period of time that there are gene panels that have like seizure and large head and they're looking at, you know, specific diagnoses that match that. So if you present, if your child presents with a specific list of symptoms, then instead of having to get this whole exome sequencing approved, they can do just a specific panel which is cost efficient and helps really kind of hone in on the diagnosis. So I think we are getting to the point where it's getting faster, but there are so many of us that it took so long to get there. And there's still, I know there's still people out there that are living this journey where heir child's diagnosis has not been discovered yet. There are lots of families that are on this undiagnosed journey and hopefully as more time goes on, you know, they'll be less and less. But I think we're gonna be sitting in a, in a time period where genetics is gonna rapidly change. I mean, yeah, I wrote this article and we'll put a link in our, in our stuff for y'all that are listening, um, interviewing you and some doctors and, and I mean it is, it's changing rapidly and it's advancing rapidly, but it's still, you know, for families that are in it, it feels like a snail's pace. And I can't help but think, you know, there's so much more information now. But what about those families who don't have the privilege that you and I have who are working two jobs who English is not their first language, you know, who are single parents and just don't have the health insurance or the time or the resources to do the research. Is there anything for them? Like is there support for them and, and how do we do better getting this information out to those who, who don't even know where to start looking? You know, Erin, these are such great questions and I know that there's some work, um, that the, that your center's working on that V C U is working on that are hopefully gonna be helping lots of families in Virginia. I think, you know, social media, I mean, is is definitely a way to help families connect, but we're still kind of missing out on, on ways to really reach these families that wouldn't even go to the doctor to begin with, to, to kind of get the ball rolling and, you know, I think reaching out to or have like having our, our pediatricians be able to have a way to get these families to connect to other families. You know, whether like, especially like not even thinking of a specific diagnosis, but like if our, if our pediatricians are concerned that there may be abnormal or development of a, a child, like connecting them to another family so that they have support, um, because those of us that have been through it, like we wanna support other people, being able to do that in some way, shape or form, I think would be, uh, amazing. But right now, um, I'm not really sure of all the ways that that, I mean, I don't think there's a lot, that lot going on besides the work that you guys are, are getting ready to start, which I think is gonna be incredible for Virginia. Well, yeah, so the Center for Family Involvement, not only do we have a family navigator program that helps families, um, we match families with similar conditions. So if you have a family who has someone with Down syndrome, a child with Down syndrome, we find a parent through our volunteer program to match who you can talk to. But the beauty of it is we have so many different rare conditions, right? But also cultural differences. And we, we take great effort to find people to find their people, not just with whatever disorder they may be dealing with, but whatever cultural sensitivities that go along with it. And then yes, we have just launched, um, a genetic navigator program, um, which does something similar but with these specific questions about genetics. But, you know, it, it is, it is one of those things where we're there we have help and uh, it's, it's that not everyone knows where to look. And I think the beautiful thing, you know, we're talking about S K S and we're talking about the Center for Family Involvement, and we can talk about autism and Down syndrome, but I always stress to people that we don't silo ourselves because disability is, is still just such a small minority when you look at our country and our world, right? And developmental and intellectual disabilities are even smaller. And then when you look at rare diseases, according to the National Human Genome Research Institute, there are around 350 million people on earth with rare disorders. So this is a disorder or condition with fewer than 200,000 people diagnosed. And about 80% of these rare disorders are genetic in origin, and 95% of them don't even have a single treatment authorized and approved by the F D A, right? So when we're talking about these things that we're dealing with, it's great to find our people. And I do like, you know, like I'm sure with S K S, you, you have this, these niches to talk about. And whenever I meet a parent of someone with Down syndrome or a person with Down syndrome, there are certain things we just know about because it's so common within the condition. But when we talk about the bigger movement in helping families and, and helping understand rare disorders, uh, I mean it's, I I I cannot stress how important it's that we work together. That's why I love having this conversation with you and learning so much more. Yes, I think it's so important that we are supporting each other, um, regardless of what the, our child's diagnosis is because we're going to experience the same challenges, access to medical care, access to specialists, how to write that I E P for certain challenges that your child is going through, how to navigate the transition time period when your child, um, is becoming an adult. So there's so many challenges that we're going to experience that have really nothing to do with our specific diagnosis, but do have to do with those larger symptoms that our, our children's share. And so together, you know, we can really kind of make a bigger impact, not only with our own children, but with helping others. I really think it's important to give back to those that are starting off the journey, not just how to find the diagnosis, but how to access things in their community that can help their, their child, help their family to be able to, you know, have just a more quality, better quality of life. Absolutely. And you know, something you said earlier really struck me because it's so common with so many families, is that you have to have a diagnosis to, you know, for your I E P, which is just, it's such a ridiculous thing that schools put upon families. A developmental delay is a developmental delay. We don't need to categorize it into a certain diagnosis or ID or DED or whatever, ed. I mean, it's, it's categorizing and labeling is doing such a disservice if we could just treat the student and not worry about, uh, uh, it just, uh, it's baffling individualized education plan. Look at the individual, the diagnosis should have nothing to do with it. Well, Erin, I think we could have a whole other podcast about IEPs, , I think you're right. And the challenges that we face in, in, in Virginia and probably in every state, but yes, I I we have been fighting that battle and it's, it is very true. Like the labels do not really define our children. Putting the resources together to help each child meet their milestones and be able to access their curriculum and access their surroundings and be a child is what really the focus should be on. Hmm, Absolutely. And you're right. I, I could dive into this and that is a whole wormhole that I'm gonna keep closed because we need to, uh, we need to do an entire podcast on that. Sarah's the, the thing that I see in my family and, and some of the struggles I see have nothing to do with my son with a disability. It just has to do with everything that goes along with it. Like we've been talking and my son has, or so my son, I have three children and, and Arlo, my oldest has two younger siblings. And I see how all of the things that I have to do to support him, impact them, and they roll with it so easily because it's just part of their life. But sometimes they do feel it. And I think you kind of have the opposite, right? You have two older children. I mean, how has that journey been for them? Like, how has it been difficult? Are they understanding, are they supportive? What's that been like as a whole family? I mean it's, you know, when you have a, a child that is, that has struggles with either developmental delay or intellectual impairment, autism, any, any diagnosis like that, it's a family affair no matter what. Right? So I think having a younger child when therapy started, um, you know, he was an early intervention. So we, I did everything during the day while my kids were at school. But then as he aged out of early intervention and went into the public school system, everything became after school. And so it was very taxing on everybody. We had to divide and conquer often, um, where one parent is taking one child to do their extracurriculars and the other parent is doing the therapies. And I had three kids. So my middle son Brady often went with me and Charlie to do the therapies. So he has really kind of been living the life of, um, of that, um, right next to Charlie, like the longest where my oldest older son was, is five and a half years older. So he kind of already was, you know, on the path of what sports he was into. And, and so we, we, you know, divided and conquered. We luckily, um, had grandparents that live in the area, so they also were able to help. But there were times where we had no help and it was just us. And that becomes a true family affair. I definitely recommend looking to your therapy centers, to your pediatricians to find sibling classes. You know, we did those over the years. Both of my kids participated and they were always really helpful. Empathy is is something that comes from within, but also sometimes kids need to be taught a little bit about empathy and going to those classes, I found that my kids came back like refreshed and more, had more of an understanding and also making sure that they had time for themselves too. And even if that was, once I put Charlie to bed, I did movie night with just my older two, cuz that was all we could manage to, to pull off. I make sure that we have time for each child, but that's, it's an exhausting task as a parent to, to do that. You know, I definitely feel for, for all parents that are going through that, It's really hard. I find myself struggling and realizing that I need to like find someone to be with my oldest who's 12, who should be able to stay home alone so I can spend time with the other two. Sometimes he, my oldest just will not do something. And it, it really, like, you can be out like exploring a town and looking at shops and he'll just refuse and wanna go home and there is literally no stopping him. And so, as hard as it is to like, not have him included, sometimes it's the best thing to do for the other two to experience things that they wanna do. And it's just, it's such an inner conflict dealing with this all the time. And especially when, like, we don't have family nearest, we have no supports. Every support we have is hired or asking a friend to do a favor that I might not be able to return. So I don't wanna ask them. Yes, I to I totally understand that. And it's, it, you know, anything that we do in this house after seven o'clock is not with Charlie because that is the, that's the bedtime for him. And if we vary from that bedtime, then we do not have the best version of Charlie. And, and no, it's not fun for anybody. Um, so Erin, we, that happens to us a lot also, and there's a lot of inner conflict as a parent because you, you know, and I, I try not to, um, look at other families who are experiencing those things as a whole and rec and, and then, you know, you realize that you're not able to do that as a whole. Um, because I don't wanna put myself back in that cycle of grief, but it's very easy to, to be able to compare. It really is. And I love that you said that, Sarah. I love that. You know, you just don't compare because it, it can be hard, especially like hanging out with my brothers and their kids, and it's just seeing how different their life is just by some chromosomes, you know, it's, it's really interesting. But yes, the but there are things that they'll never get to experience. There's joys and struggles that are so unique that they'll never know. And I guess that's the beauty of finding your people, right? Because you can share with them. And I wanted to ask you too before we run out of time, because I think what is unique about a lot of groups that we find, and what I heard when I spoke with someone that works with your organization is how much the doctors learn from parents like us because we are so busy researching because we have to, because there is no research out there on some of the conditions that people face. So as parents, we are as much a part of the medical teams in many cases as, as the doctors. I mean, has that been your experience? 100%. First of all, my advice to other families are if you are not being treated at that level with the, the team that you're working with, seek another team. Especially when you're on the journey to a diagnosis, you need to be heard and you need to be respected. And you know, people are human. You're not always gonna have that path. So if you're not finding that path, I recommend trying to seek another team, seek another specialist if you can, because you definitely need to be heard and respected in order to help your child get to that diagnosis. I, I mean, I've l I've learned from so many of medical professionals over the years, not just about Charlie's diagnosis, but others. And many times the ones that are, that stick out to me are the ones that always say, I learned from the families. The families are teaching me along the way. Um, you want that partnership, that partnership is so important. You want to feel that they really do understand and and want to help you. Yeah. It's, it's amazing to me the relationships that you form with doctors and nurses and other professionals because of this. And I, I had to like, I was someone who never needed to see a doctor and then all of a sudden my first child stopped moving and emergency c-section and, and like my whole world flipped upside down. Right? And now I'm like talking to doctors all the time and I've learned so much. They're not like on this pedestal that we put them on. And one of the most important things I think, that I learned from one of my son's specialists is that it's a lot of guesswork and you don't realize that like they're just throwing things against the wall hoping it helps. My son has immunology stuff going on that's so complex and not understood that it's not even an official name for it. Right. And one of the doctors I worked with, I was like, can I read something? I wanna understand what these blood levels mean. He's like, there's no research to read on this. No one's been able to even see this before. This is first. So yeah, if you have a doctor that's dismissing something you're saying and doesn't wanna listen and, and doesn't take your concerns seriously, find a new one. Absolutely. But easier said than done, especially if you have insurance that dictates exactly who you're supposed to go to or, um, you have language barriers so you don't even understand how to get, get to the, the other, um, specialists that could possibly see your child or see you. It's definitely part of the journey and it's hard, but I think that's where family supports groups can come into play. Or you know, what the Genetic Navigator program where you have, you know, if somebody is let, if somebody tells me in the beginning their journey that they're struggling, even with like early intervention therapists, I always say, if it's not a good fit for you, then it's not gonna be a good fit for your child. Like, you gotta make sure that you feel good about it because you want to learn from them and you want them to help your child. So I always try to give that advice to families when I'm paired up with, with somebody who's starting a, a new journey like this. I think that's why it's so important to find a group to get your ideas and push them off on somebody else. So whether it's the Center for Family Involvement or like you said, you could, I mean, our communities, our individual communities are so accepting. If you have something going on and you don't know what it is, you will be welcomed. People will bend over backwards to help answer your questions. I've found that over and over again. They just wanna help because they know how hard it is. It's just reaching out. Yeah, absolutely. Together we're stronger. Right? Together we're stronger. That is so spot on and the perfect way to end this. But before we do, Sarah, is there anything that you'd like to add? No, I think, you know, this is, this is a really important topic, uh, to put out there so that people know, um, how to get started, um, what somebody else has gone through and, um, what to do when you're on this journey. So I really appreciate all that you're doing to kind of highlight and raise awareness to, um, you know, walking this diagnostic odyssey to getting a genetic diagnosis, especially of rare diseases. Well, thank you for your work in helping people find out, I mean, patient registries and working with specialists and having medical professionals be a part of your organization. I mean, this is just, this is just so important and, and it's so inspiring, um, your work. Thank you. Well, thank you very much. It's, you know, it's really important to me that, you know, we raise awareness not just for s k s but for, um, for rare disease in general and for anybody being going through this journey so that we can kind of help them and shed some light on what we've gone through. Excellent. Thank you Sarah. And thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate, review and share and tell us what you wanna hear about. We've got tons of topics in the pipeline and are always welcome to ideas. You are listening to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.