Stories – Mothers On The Front Line

In this episode, we discuss the origin of Mothers on the Frontline.

Origin story of Mothers on the Frontline

In this episode, we will discuss the Third Principle of the Children’s Mental Health Justice Framework: The lived experiences of children, caregivers, families, and communities matter.

This episode is a deeper dive into the second principle of the Children's Mental Health Justice Framework: Children's Mental Health Justice and Caregiver Justice are mutually dependent.

In this episode, we discuss the first principle of the Children's Mental Health Justice Framework: Children's mental illness, injury, and harms are real and deserving of care.

In this episode, we discuss the Children’s Mental Health Justice (CHMJ) Framework, what it is, and why it is important. We provide an overview of the three CMHJ principles.

  Note: This interview was recorded in 2018. Transcription: [music] Welcome to the Mothers on the Frontline Podcast. Mothers on the Frontline is a nonprofit organization, founded and run by mothers of children with mental illness to promote caregiver healing and children’s mental health justice through storytelling. Our vision is a world in which mental health is destigmatized, respected, and prioritized as an integral part of the overall health of individuals, families, and communities. In this episode we hear from Dianne Thacker, a social worker by profession, a stay-at-home mom by choice, and someone who is dedicated to helping other families find the resources they need to help their children. Interviewer: So, hello. Thank you for being with us today. Can you tell us a little bit about yourself. Before or outside of mothering, who are you? What do you love to do? What are your passions? Diane Thacker: Okay. I’m Diane Thacker. I’m a social worker by profession. A stay-at-home mom by choice. I dubbed myself as a resource specialist. Later in the game I’m 50 years old and I am ageless. Interviewer: I love that. Diane: Yeah. I don’t get in to, “Oh my gosh. I’m gonna be old now.” I celebrate birthdays because you can. No matter the glow on the cake. Interviewer: That’s right. Diane: Okay. I love to read books. But I have a kind of a weird quirk about it. I start reading some of the end pages first. Interviewer: Oh, do you? You like to know what’s coming? Diane: Yeah. Or to kind of see what the outcome’s going to be. Because then if I get hooked in, then I could go back to and start reading it. Otherwise it’s boring and I’m not going to read it. And then it takes like maybe two or three days just to get it done. Interviewer: Right. Diane: Okay. I like to do genealogy. Although that wasn’t a bug issue when I begin with. For those genealogist who’d go, “I know. I know the bug.” It became a-  let’s see and if I call that, an assignment. When I was fourteen and I was in my great aunt’s house in a small town called Zearing, Iowa. She asked me one day, and I’m just like, well maybe I was like eleven years old, if I knew who my family was. And of course I knew my mom’s side because that was all we knew. And I didn’t understand the question as to why she was asking me that. So I’m like,”Why?” And she’s, “Well because, you know I’m working on my family tree here.” And I’m like, “Oh, wow.” She has got a big table with all of her books and the papers. And I’m looking at her bay- this big wave bay window and I’m like, “I wish I could be outside now.” But I couldn’t. So we were you know hanging out and she says, “Well, come here Diane. Come here.” So we started looking at her stuff and I was kind of like, “Wow.” And she started connecting the dots. And for me now, connecting the dots is very important. It doesn’t always happen but when you look back at your life and you see things happening, “Oh wow that’s why that happened” and will get to that later. So then just about that time, I was doing a homework assignment. So that kind of fell into place. There is your dot. One of your dots. And so I said well- both side of your family. So in this case, we didn’t know that much about my dad’s side. My dad had died when I was six and a half. Interviewer: You were young. Diane: Yes, I was. But I did know him and I have memories of him. He was very determined. He dealt with- he had some health issues of his own. But he was very determined, very passionate. He knew-he wrote poetry, which is what I do now. It was just me and my brother and my mom. I don’t know. And he liked putting things together with his hands- fences and stuff. And he also cared for small animals. Interviewer: Oh, nice. Diane: Yeah. I do remember one day he was around, but I remember sitting outside of my house and there was what appeared to be a woman who was homeless. And I really felt the need that I needed to go and give her something but my mom was like, “We don’t know that person.” But there was that social worker helping persona in myself that was coming out early. I lived in the neighborhood where it was deemed unsafe. But to me it was like, no there was nothing unsafe here. My friends are here. I still have- I have a friend who, I’ve known her for, is that fifty years old now? Seven. What is that? That say seven? Forty three years old? For forty three years, yeah. Interviewer: That’s great. Diane: Yeah. I don’t know. We did- we went everywhere together. Got lost together. Got in trouble together. [laughter] For a month together. Yeah. Interviewer: Beautiful. Diane: Yeah. So then, one day an event happens when you have to move out of your neighborhood. So you move from your one location to another. At the time, we’re like, I don’t understand why. But going back, you look at the little- okay. So that put me into a parochial school versus public school. And yes, there are differences there. And maybe if I’m not connecting the dots, it made me understand when I have my kiddos now the differences of that. So I went to [appeal] school up until high school. And then a Catholic school. And then into college at Grandview. And I really didn’t know, you know, “What do you want to be when you grow up?” And I’m like, I have no idea. But again I knew that I had that part of me that wanted to help. And so I took a BA in Human Services. I would love to say that my professors were all like black and white. And it’s what you’re going to do when you get out of here. No, it wasn’t like that. He would tell stories about his world and experiences. And I wouldn’t understand why that had to do with the material in the book. But as I got older and began to understand, social work is not like that. It’s not like wrote down on a book. You may learn it but you’ve got to go outside the box, to live it. Interviewer: A little messier. [laughter] Diane: A little bit oh yeah. Okay. And then when you’re first learning the ropes of how to do that, I got my first- well, I was a nanny. Right before my work at The Boys and Girls Club, but as a nanny too. So that gave me the ability- small, to work with somebody and their family. And to bring the experiences that I had there. So I did that for a couple of years. And then I worked at one of the facilities here in town, as a youth service worker. I worked with offenders. Interviewer: Wow. Diane: Yeah. Interviewer: So you’ve really- from working with young people. Diane: Yes. And main families for- Interviewer: And families. You’re whole life, really. Diane: Yeah. Right. And in the mix of that I worked at one of the nursing homes. I was a receptionist, but I still had to know what was happening on the floor. Making sure that they weren’t going to walk out the door. Beginning, you know, if one of the residents came into me and say, “Hey I really want to talk.” To be empathetic person to them. To feel them out to see if they needed anything at that time. Be able to be on call when the flood came, ’cause that was during the time when the flood of 1993 came through. Interviewer: Oh, wow. Diane: Yeah. And I couldn’t go home that night. And the bridge had shifted. So they asked me if I knew how- the staff there at the receptionist asked me if I knew how to do a six-phone- phone line. No, not at that time. But I had learned really quick how. And again the dots came together because I got a phone call from a- she used to be a telephone operator. And she was looking for a way to help. And she says I’m like you- just one second. Can she- yes, she can come. And so she was able to come and take care of that phone line. But if I didn’t answer that phone, at the time, we wouldn’t have that connection to the- yeah. Interviewer: So you really have been helping people all along from the whole spectrum. Geriatric, youth offenders, families. Really everybody. Diane: I did some volunteer stuff. I would do hospitals a little bit. I didn’t- I went for the training. And I didn’t really have to use it until, well, a friend of mine went. So I then, I was able to understand the world a little bit more. If I had gone in there cold, I wouldn’t have been able to feel what to do and how to respectfully walk in. Interviewer: Absolutely. So yeah. Diane: Let’s see, so my life was pretty much, yes, social work filled. Up until about 2003. We had been- I had gotten married. And he- he’s a jack of all trades. He was a fireman, ambulance driver. You name it and he’s done it, corrections and all that. He was somebody that your mom would go, “hmm.” But I was like, yes, I like him. And that’s all the way it go- this one’s going to be that way. And I just knew. But I had- we hadn’t gotten married right a way. It was we waited for 4 years. I wanted to finish college and I wanted him to figure out what he wanted to really do. And then go from there, yeah. So we got married and we were told that we wouldn’t be able to have babies. Interviewer: Oh my, that’s hard. Diane: Yeah. That is hard. And I know there’s a few of us out there who- when I say that, well yes. But been there done it. And it’s- it’s kind of hard to hear. Especially if you- Interviewer: It has to be. Diane: Yes. Especially if you wanted to have them. So we’re like well. And there’s that no. I’m like, well, no-no-no-no. Interviewer: You don’t like no. Diane: No. Well there’s no for a reason. You know is it going to hurt you, is it going to be something you can’t do yet. Okay. But if there’s like this, well- maybe. But I’m like researching. Because that’s what I do too, I’m a resource specialist. And I try to find those ways to do it. Now, in my particular world, it comes down to my faith. My spiritual direction. Well my- I’m...

This episode of the Conversations Between Friends series was recorded June 29, 2020.

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In this episode we discuss: what it means to be an allythe difference between performative and authentic allyshiphow allyship differs from friendship and being a coalition partnerstigma jumping vs intersectional activism and advocacyTerms: Allyship – An active, consistent, and arduous practice of unlearning and re-evaluating, in which a person in a position of privilege and power seeks to operate in solidarity with a marginalized group and works to ensure equality, opportunity and inclusion for everyone. (Thank you to Sonya, Sophie, Gigi and Lilah – students in Dionne Bensonsmith’s “Introduction to Feminism, Gender, and Sexuality” Class in the Fall 2019 at Scripps College – for this definition.) Intersectionality – A framework for understanding the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, creating overlapping and interdependent systems of discrimination or disadvantage. (This term was coined by Kimberlé Crenshaw in 1989.) Stigma-Jumping – Avoiding association with potential allies or coalition partners to avoid their stigma being attached to your cause, organization or person. Stigma jumping is a barrier to intersectional activism and advocacy and therefore neglects the most vulnerable. (This term was coined by Tammy Nyden in 2017.) Resources: Allyship (Definitions): Rochester Racial Justice Toolkit “What is Allyship?”” Michelle Kim “Allyship (& Accomplice): The What, the Why, and the How” Seventeen Magazine “What is Performative Allyship?” Teaching Tolerance “Ally or Accomplice: The Language of Activism” On Privilege and Power University of San Francisco, Gleeson Library “White Privilege Resource Guide” How to be an Ally (start here and by all means, do not stop): The Anti-Oppression Network “Allyship” Amélie Lamont “Guide to Allyship” Jamie Utt  “So You Call Yourself an Ally: 10 Things All ‘Allies’ Need to Know” Chris Scot Cole “3 Things Not To Do When Someone Discloses Their Invisible Disability”

In this episode we have a conversation about defunding the police: what it means, what it doesn’t mean, and how the phrase raises different emotions in people depending on their personal experiences with the police and racism.How decades of consistent and pervasive defunding of community programming, healthcare, and education has harmed communities. We focus on the effects for children with disabilities.School Resource officers and police brutality in the schools that specifically targets black and brown children and children with disabilities.How policy runs on narratives, not statistics. We discuss and challenge narratives about “bad neighborhoods” and “bad children” that are steeped in anti-black racism, anti-indigeneity, and ableism and have fueled bad policy for decades.For more information about this topic: Defunding the police: Democracy NOW!:  “Defund the Police: Linda Sarsour & Mychal Denzel Smith on What Meaningful Change Would Look Like” USA Today “What does ‘defund the police’ mean and why some say ‘reform’ is not enough” Black Lives Matter Los Angeles Times “Eliminate school police, L.A. teachers union leaders say” Reading Towward Abolition: A Reading List on Policing, Rebellion, and the Criminalization of Blackness by the Abusable Past. Resources for teaching and talking about racism: EdJustice: “Black Lives Matter at School – Resources” Watson, Dyan, Jesse Hagopian, and Wayne Au. Teaching for Black Lives. , 2018. Print. The Black Lives Matter Syllabus The School to Prison Pipeline: Bullies in Blue: The Problem with School Policing [infographic] by the ACLU Cops and No Counselors: How the Lack of School Mental Health is Harming Students by the ACLU ** The image above was drawn by Akim, a 10 year African American boy expressing his feelings in this current moment of police brutality, racism, and Covid-19.

In this episode, the founders of Mothers on the Frontline discuss grief, racial privilege, policing, and the performativity of emotion. Families and communities are grieving right now. We are grieving the deaths of over 100,000 Americans to Covid-19, which has disproportionately affected Black and Brown communities. We are grieving ongoing and countless losses of African-American Women, Men, and non-binary folk, children to elders, to institutional racism, particularly by the very structures that should be protecting them, including the police. Many parents are grieving the loss of the veneer of safety they once felt for themselves and their black and brown children in the community and in their very homes. Many white allies see the collective grief in the Black community and the pain in the eyes of their Black friends. They want to be helpful, but often fail to recognize their own emotional privilege. We examine how the centering and privileging of white emotion can result in dysfunctional empathy, as well as the weaponization of white lady tears.   Today’s conversation challenges us to think about how the expression of emotion is learned and responded to very differently between White and Black women and how white emotional privilege in turn affects social narratives, resulting in particular interactions between children, police, and schools which are detrimental to children’s mental health. If you are interested in learning more about some of the topics mentioned in this podcast we suggest the following: For information on addressing racism and racist thinking in your personal relationships: Seed the Way “Interrupting Bias: Calling In vs. Calling Out” A good guide on ACEs and Toxic Stress: Harvard University: Center on the Developing Child “ACEs and Toxic Stress: Frequently Asked Questions” Mentioned in the Podcast: DiAngelo, Robin J., White Fragility: Why It’s So Hard for White People to Talk about Racism. United States, Beacon Press, 2018. National Domestic Workers Alliance

Kate is a mother from Iowa whose children have autism, anxiety, ADHD, sensory processing disorder and prosopagnosia. In this episode, she discusses what it was like when her son was first diagnosed, adjusting each year to new teachers, and what it is like to go through the ups and downs of parenting children who are ‘differently wired’. Transcription [music] Welcome to the Mothers on the Frontline Podcast, episode 28. Mothers on the Frontline is a nonprofit organization, founded and run by mothers of children with mental illness to promote caregiver healing and children’s mental health justice through storytelling. Our vision is a world in which mental health is destigmatized, respected, and prioritized as an integral part of the overall health of individuals, families, and communities. In this episode, we hear from Kate, a mother from Iowa whose children have autism, anxiety, ADHD, sensory processing disorder and prosopagnosia. Tammy: So hello, tell us a little bit about yourself before or outside of mothering, who are you, what do you love, what do you love to do? Kate: I love yoga. I’m a very fanatic yogi and what has happened with my son has really put me in touch with yoga and with mindfulness so I really like to do that. I like to walk, I like to do gardening and I just, overall, I’m a very positive person, and I like to just have fun. Tammy: Well that’s wonderful, it’s wonderful. So I want you to pretend you’re talking to parents. What do you want them to know about your experiences? What can you share that may be helpful for them to know? Kate: So in 2014, my son was officially diagnosed with ADHD, oppositional defiant disorder ODD and anxiety, and we have been going through a struggle which started actually with him in preschool. Where we had seen some of the signs but we weren’t quite sure. He also has allergies, and because of that, he had to be on steroids sometimes. So it was very hard to figure out what is normal two to three-year-old behavior, what is induced by being on steroids and what is behavior that is cause for concern. And at that time too when I would be talking to my parents-in-law, often they would say like, well, you know your husband was just the same when he was little. But then after a while, we were really starting to struggle. It was hard for us sometimes to enjoy weekends. Where you’re looking forward to Monday because it’s so draining, emotionally draining to be around your little guy. And there comes a huge guilt complex with that because you feel like it’s your fault, you’re not doing something right. And after a while, my husband and I, we were just like, we need help. And at the time he was in daycare which also had a preschool tied to it. They were very open to working with us, so we, they said like, we’ll have somebody from Grant Wood AEA come in, evaluate, and then we’ll just see what happens. We did that. There was some cause for concern and then we also, on our own reached out to psychologist and start working with her. And then in 2014, by the year before he went to kindergarten, he got officially diagnosed. So which was for us, a lot of things sort of all the puzzle pieces start to come together. And we were just relieved in a way. But then, on the other hand, it’s like there’s a huge learning curve. Because now it’s like, I know what it is, but what do I need to know? So… Tammy: Right. So, for parents who are out there who are starting their journey, they haven’t had the diagnosis yet or ones that have just got it. Like what could you talk about in terms of barriers that you have faced that had been hard for you to get your child the help he needs? Kate: Personally for myself, I think I was the biggest barrier because sometimes you’re in denial and you think like oh it’s just the age. It will be okay. This will, well, will resolve itself down the line but it’s not. So it just, once you come to that realization and also give yourself a break. I think sometimes as parents, we all try to do a really good job but we’re only humans too but we’re really hard on ourselves. And a lot with mental illness diagnosis, there’s a lot of shame I think sometimes connected to it as well. Tammy: Absolutely. Kate: So people or parents it holds them back at that shame but it’s okay to ask for help. Tammy: Absolutely. Kate: And I think that sometimes that was a barrier for myself. Like I’m always being very independent. I’m a go-getter. I just get things done myself. But there was a point that I reached that I was like I don’t want to live like this. This is not normal. If I’m doing something wrong I need help and I need somebody to let me know, how I need to adjust my parenting style because I want to enjoy the time I spent together with my little guy. Tammy: You brought up several things that are really important. I mean one is it’s really confusing and you don’t get to have a control. You have a kid, you don’t get to have a scientific control and say okay what really is causing this. Let’s change some variables. No, and especially for those of us who, it’s our only or first child. It can even be, we don’t know what normal is and it’s such a wide range. So it’s hard to know if this is neurotypical development or it’s something we should pay attention to. Is it just quirky or is it something that’s problematic that they need help with. So that’s just hard to know. You also brought up another element which is the shame, right? And so asking for help and the third thing is if your child, there’s something going on, we often have to adapt. So it isn’t that our parenting is wrong, its our parenting is wrong for the child with this neurology. Katie: Exactly. Tammy: So there’s no one right way to parent. It depends on the child’s needs. I love that you brought up all that. I just wanted to go back. Oh, yes, I think that’s a really important for us trying to go through it. It gets all mingled up. So I love that.  Kate: And then there was what I had to like I was going by how I was raised by my mom and dad, and I think they did a superb job, but I was a very easy kid. I will always, I listened, I didn’t fuss a lot and I was also raised and I think a lot of people of our generation are raised like that. If mom and dad ask you something, you do it and that was the hardest for me. Like why is my kid not listening to me? And because of his ODD diagnosis, he’s not as much defiant towards the dad but it’s more towards me. Which is weird too because they always say like they will be less defiant to the authoritative person in the relationship but that’s actually me [laughs] who’s the one that [inaudible]. He’s like yeah if go to mommy and asked her that, I’m not going to get away with that. I’ll just go to dad. [laughs] Tammy: [laughs] You know but that’s another thing. Just like all kids and all human beings they are different with different people and it can be really, it can hurt our feelings. Like it can be really hard when we’re the ones seeing the symptoms, right? And so that can be really hard and often it could be because we’re the parent they feel safe with or the person they feel safe with in terms of they know they’re not going to not love me if I act up. As opposed to like a stranger, a teacher or something like that. They might hold it in more or something. Yeah. No. It’s really hard. So, same thing. Thinking about parents out there, what has worked really well in getting help for your child? What had been some successes or things you’re like, thank goodness that that happened or is available or–? Kate: The number one thing for me was first, I had to change myself before I was able to help my son. I had to let go of control. I had to let go of worrying and that goes often with control because you want to know, oh, what’s going to happen then? Well, how is this journey going to be? Is it always going to be like this? And after a while, I just let go of all of that. I’d lived day by day. I take one day at a time. If we sometimes have a bad day, I always say, tomorrow is another day and we start with a clean slate. And I tell my son that as well. For myself too, I let go of emotions because I had such an emotional kid, and he still is but we’ve really worked hard with him on helping gauge his emotions better or that he’s just more aware of them and then he will be able to stop himself. And I think sometimes maturity helps with it as well. But at the time when we were struggling, I would always get like asking put your shoes on. It was like World War III. And it’s the battle you engage and you get worked up and you get upset and you start yelling, which I hate to do or you hear yourself the whole time just saying no, no, you can’t do this because he’s like all over the place. That for me was just letting go of that control and just being aware of that. Like I’m not going to go invest my emotions in that. I’m going to be very patient. I’m just going to take a step back and stay calm. And that has really helped like it’s not always successful. Tammy: It’s not easy.  Kate: Sometimes I have to dig really, really, really deep or I’m thinking like, oh, I really want to do this or this and this right now but no, I don’t look good in orange so I’m not going to do that. But then again, that helps me just sometimes to get through it because the sense of humor. Just being aware of like this is a very tough situation and I’m just trying to do my best. And sometimes I can’t do that and I walk away. And I give myself that break then I’m just like I can’t handle this. I just walk away and it’s okay.  Tammy: It’s not only okay it’s great modeling for your son.  Kate: I try to. Yeah. Tammy: And it’s really important for you and me and all mothers and caregivers. It...

[music] Welcome to Mothers on the Frontline Podcast. Today, as part of our Just Ask Mom Series,we listen to a Mom of a 9 year old diagnosed with ADHD, Oppositional Defiant Disorder and Anxiety in 2014. [music] Tammy: Tell us a little bit about yourself before or outside of mothering, who are you, what do you love, what do you love to do? Mom: I love yoga. I’m a very fanatic yogi and what has happened with my son has really put me in touch with yoga and with mindfulness so I really like to do that. I like to walk, I like to do gardening and I just overall, am a very positive person, and I like to just have fun. Tammy: Well that’s wonderful, it’s wonderful. So I want you to pretend you’re talking to parents. What do you want them to know about your experiences? What can you share that may be helpful for them to know? Mom: So in 2014, my son was officially diagnosed with ADHD, oppositional defiant disorder ODD and anxiety, and we have been going through a struggle which started actually with him in preschool. Where we had seen some of the signs but we weren’t quite sure.He also has allergies, and because of that, he had to be on steroids sometimes.So it was very hard to figure out what is normal to 3-year-old behavior, what is induced by being on steroids and what is behavior that is cause for concern.And at that time too when I would be talking to my parents-in-law, often they would say like, well, you know your husband was just the same when he was little. But then after a while, we were really starting to struggle. It was hard for us sometimes to enjoy weekends. Where you’re looking forward to Monday because it’s so draining, emotionally draining to be around your little guy.And there comes a huge guilt complex with that because you feel like it’s your fault, you’re not doing something right. And after a while, my husband and I,we were just like, we need help. And at the time he was in daycare which also had a preschool tied to it. They were very open to working with us, so we, theysaid like, we’ll have somebody from the AEA [Area Education Agency] come in, evaluate, and then we’ll just see what happens. We did that. There was some cause for concern and then we also, on our own reached out to psychologist and start working with her. And then in 2014, by the year before he went to kindergarten, he got officially diagnosed. So which was for us, a lot of things sort of all the puzzle pieces start to come together. And we were just relieved in a way. But then, on the other hand, it’s like there’s a huge learning curve. Because now it’s like, I know what it is, but what do I need to know? So… Tammy: Right. So, for parents who are out there who are starting their journey, they haven’t had the diagnosis yet or ones that have just got it. Like what could you talk about in terms of barriers that you have faced that had been hard for you to get your child the help he needs? Mom: Personally for myself, I think I was the biggest barrier because sometimes you’re in denial and you think like oh it’s just the age. It will be okay. This will, well, will resolve itself down the line but it’s not. So it just, once you come to that realization and also give yourself a break. I think sometimes as parents,we all try to do a really good job but we’re only humans too but we’re really hard on ourselves. And a lot with mental illness diagnosis, there’s a lot of shame I think sometimes connected to it as well. Tammy: Absolutely. Mom:So people or parents it holds them back at that shame but it’s okay to ask for help. Tammy: Absolutely. Mom: And I think that sometimes that was a barrier for myself. Like I’m always being very independent. I’m a go-getter. I just get things done myself. But there was a point that I reach that I was like I don’t want to live like this. This is not normal. If I’m doing something wrong I need help and I need somebody to let me know, how I need to adjust my parenting style because I want to enjoy the time I spent together with my little guy. Tammy: You brought up several things that are really important. I mean one is it’s really confusing and you don’t get to have a control. You have a kid, you don’t get to have a scientific control and say okay what really is causing this. Let’s change some variables.No, and especially for those of us who, it’s our only or first child. It can even be, we don’t know what normal is and it’s such a wide range. So it’s hard to know if this is neurotypical development or it’s something we should pay attention to. Is it just quirky or is it something that’s problematic that they need help with. So that’s just hard to know. You also brought up another element which is the shame, right? And so asking for help and the third thing is if your child, there’s something going on, we often have to adapt. So it isn’t that our parenting is wrong, it’s our parenting is wrong for the child with this neurology. Mom: Exactly. Tammy: So there’s no one right way to parent. It depends on the child’s needs. I love that you brought up all that. I just wanted to go back over that because I think that’s a really important for us trying to go through it. It gets all mingled up. So I love that.  Mom: And that was what I had too. I was going by how I was raised by my mom and dad, and I think they did a superb job, but I was a very easy kid. I will always, I listened, I didn’t fuss a lot and I was also raised and I think a lot of people of our generation are raised like that. If mom and dad ask you something, you do it and that was the hardest for me. Like why is my kid not listening to me? And because of his ODD diagnosis, he’s not as much defiant towards the dad but it’s more towards me.Which is weird too because they always say like they will be less defiant to the authoritative person in the relationship but that’s actually me [laughs] who’s the one that [inaudible]. He’s like yeah if go to mommy and asked her that, I’m not going to get away with that. I’ll just go to dad. [laughs] Tammy: [laughs] You know but that’s another thing. Just like all kids and all human beings they are different with different people and it can be really, it can hurt our feelings.Like it can be really hard when we’re the ones seeing the symptoms, right? And so that can be really hard and often it could be because we’re the parent they feel safe with or the person they feel safe with in terms of they know they’re not going to not love me if I act up. As opposed to like a stranger, a teacher or something like that. They might hold it in more or something. Yeah. No. It’s really hard. So, same thing. Thinking about parents out there, what has worked really well in getting help for your child? What had been some successes or things you’re like, thank goodness that that happened or is available or–? Mom: The number one thing for me was first, I had to change myself before I was able to help my son. I had to let goof control. I had to let go of worrying and that goes often with control because you want to know, oh, what’s going to happen then? Well, how is this journey going to be? Is it always going to be like this? And after a while, I just let go of all of that. I’d lived day by day. I take one day at a time. If we sometimes have a bad day, I always say, tomorrow is another day and we start with a clean slate. And I tell my son that as well. For myself too, I let go of emotions because I had such an emotional kid, and he still is but we’ve really worked hard with him on helping gauge his emotions better or that he’s just more aware of them and then he will be able to stop himself. And I think sometimes maturity helps with it as well. But at the time when we were struggling, I would always get like asking put your shoes on. It was like World War III. And it’s the battle you engage and you get worked up and you get upset and you start yelling which I hate to do or you hear yourself the whole time just saying no, no, you can’t do this because he’s like all over the place.That for me was just letting go of that control and just being aware of that.Like I’m not going to go invest my emotions in that. I’m going to be very patient. I’m just going to take a step back and stay calm. And that has really helped like it’s not always successful. Tammy: It’s not easy.  Mom: Sometimes I have to dig really,really, really deep or I’m thinking like, oh, I really want to do this or this and this right now but no, I don’t look good in orange so I’m not going to do that. But then again, that helps me just sometimes to get through it because the sense of humor. Just being aware of like this is a very tough situation and I’m just trying to do my best. And sometimes I can’t do that and I walk away.And I give myself that break then I’m just like I can’t handle this. I just walk away and it’s okay.  Tammy: It’s not only okay it’s great modeling for your son.  Mom: I try to. Yeah. Tammy: And it’s really important for you and me and all mothers and caregivers. It’s wonderful that you’re doing that. But it’s hard.  Mom: It is hard. It is extremely hard and sometimes you feel like I am on top of the world, I got this down, I like my new parenting style, I become calmer, more patient, I don’t let my emotions get a hold of me that much anymore and other days you’re just like oh,I suck at this.  Tammy: Right now, it sounds like you’re talking about when it was really rough, but even when things are going well, we recognize, they change from moment to moment and so we like to ask right now, do you feel like you’re swimming, drowning, treading water, where are you at right now? Mom: I feel like I’m swimming but I also know due to his ADHD and his ODD, especially at the beginning of the school year can...

In this episode, a foster and adoptive parent shares her experience of caring for her biological, adoptive and foster children. Voiceover: Welcome to the Mothers on the Frontline Podcast. Today, as part of our Just Ask Mom series, we listen to a foster and adoptive parent speak about her experience caring for over 100 foster children. Tammy: Hi. So, just tell us a little bit about yourself. Before or outside of mothering, what are your passions, interests? What do you love to do? Interviewee: Well, I love kids and so, I’ve kind of embedded my entire life with lots of children that surround me and my other passion outside of my children would be gardening and being outside and taking in nature. Tammy: Very nice. Do you do that with the children sometimes or is that your escape? Interviewee: We do. It’s kind of a combination. I like to ride the lawnmower and then I pretend that I’m on some wild motorcycle and I’m on a long drive across the United States and feeling the wind in my hair and I can’t hear anybody yelling, “Mom! Mom!” Over this lawnmower. So, that’s my escape. Tammy: That’s a great one. They have to catch up. Interviewee: Yeah. That’s right. Tammy: That’s awesome. So, I want you to pretend that you’re talking to people who are considering fostering or adopting a child and so, they’re potentially thinking of doing this, what would you like them to know about your experiences and what you’ve learned along the way? Interviewee: So, I’ve been a foster parent for several years. My husband and I chose when we moved back to the Midwest, we chose that we would do this for an indigenous group of people to help out the community. We have had so far, in the 16 years that we’ve done this, we’ve had 105 placements in our home which requires you know, new furniture, new carpet at the times. There’s a lot of fear with fostering. People feel that they’re going to be attached. What happens when, if their foster parents and they become attached to that child and the child leaves them? Well, then you go through a grieving process of course, but in foster care, the most important piece that you are to do is you are to be the calm in the storm for that child and you’re focusing on reunification for that child and their parents. Sometimes, that does not occur and then you look outside the box and look at relative placements or other, potential perhaps if it goes to termination and adoptive home if you’re not considering that yourself. So, there’s the fear factor of you’re going to break your heart, what happens, and that’s natural. I’ve done this for a long time and every time a child leaves my home they take a piece of my heart with them but it doesn’t mean it’s the end. Tammy: Does it get easier or? Interviewee: I would never say that it gets easier. It’s still, you still go through that grieving process. The thing that we have done that works well for our family unit is we connect with the birth families and we try to mentor the parents whether it be a single mom, maybe a single dad, sometimes it is a partnership and so we try to mentor we’re not saying we’re perfect by no means but we try to mentor that couple to help them overcome the obstacles that allow them to have the child removed and so, we try to mentor them to become better parents and so if that happens we’re able to have that ongoing relationship with that child and with that family. Tammy: So, it’s almost like they’re adopting the family. Interviewee: Exactly, exactly. Tammy: Right. What about people who are thinking of adopting? Interviewee: So there’s when a child is placed, if you do through the foster care program and you are placed with a child and it does go to termination, generally, the services like to keep the child within so that they don’t develop attachment disorders or have post-traumatic stress disorders with another removal, another home, and another set of families. If things are going well in that foster family and they are a pre-adopt home they really would like for the child to stay within that home and so, your chances to adopt a child through the foster care system could, it’s potentially… Tammy: Does it increase your chances? Interviewee: I would say it does. I don’t wanna, It makes me feel like you’re in the market of a marketing babies of children you know. Tammy: Right. Interviewee: So, I’m not sure what words I’m searching for it to say but it — yeah, if you’re a foster parent you have the potential then to become that child’s adoptive parent. Tammy: Right. Interviewee: A pretty good chance anyways. Tammy: So, I mean that’s. So, many kids it’s first of all, just thank you. That’s amazing. What you’re doing for our whole community is amazing. What, in this experience and you’ve got a lot of experience, what has been a barrier and getting help for your children something that really hasn’t worked that has been a challenge that you wish it could be different for others in the future? Interviewee: Sometimes there’s resources that are available but they are harder to receive if you’re in a rural area. Transportation is a concern. I also see that not only for the child that maybe needs therapy and to receive a good therapist. There’s a big distance from a rural area to a larger city where the majority of really good therapists are. Tammy: Yeah. Interviewee: Should a child need that? Another barrier I see is the court orders parents to do many things to get, to ensure that they are going to be better parents and that you know, to ensure that they can handle their child if their child is reunified. But a lot of times, you’re working in a cycle and so you know, there’s addictions or whatever the case may be but usually they don’t have a driver’s license or there’s a low… Tammy: They can’t get to this. Interviewee: Exactly or they’re low income and so, they set these parameters in place and say, “Okay. You need to do A, B, C, and D but you can’t even get to step A because I don’t have a car. I don’t have a car to try to get a job.” or I don’t have the education perhaps to get the job that will pay pretty good wages to help me get a car or I have bad credit or I mean there’s all kinds of obstacles in the beginning to get to A you know, before you can ever get to D and so, I see that as problematic at times when I’ve set through some orders placed by the court that the parents have to do things which I understand why they are doing it but there needs to be reap perhaps other resources available to help these people that are typically in rural areas. Tammy: So you say all the problems you mentioned are just magnified by that distance to where the services are. Interviewee: Exactly, Correct. Tammy: If you can’t drive but you’re in a rural area, there’s no public transportation. Interviewee: Exactly. Tammy: There’s no other option. Interviewee: Exactly, yeah. Tammy: So, that’s a really good point, yeah. Are there are other things that you think of that just really made it tricky? Interviewee: You know, every program you’re involved in you know, they have their ways and their rules which I, you know, I respect that but sometimes they’re not open to other ideas and so, you feel like sometimes you come up with this really good idea of, “Hey, why are we doing it this way when we could possibly be doing something over here?” And but you feel like you’re hitting a brick wall. Tammy: Yeah. Interviewee: And as a foster parent and an adoptive parent and as with any parent we want what is best for our child and so, when a child is placed with us, that’s, I really take pride in being a good foster parent. One of the, you know, one of the first things I do for the kids that are placed with us is we have a Spa Day and so, we get all, I give them a bath and we do their hair and we get all lotioned up and you know, you’ll make sure there’s no allergies but for an example I have had one little boy that had Eczema, really bad and he felt like a little alligator. His skin and it was not his fault by no means and it was not the fault of his birth mother. I mean, she didn’t have the means for the medication. Tammy: Exactly. Interviewee: But, I had experienced with my, our son having Eczema and so, I had the lotion that we use on him and so, I started putting on this little boy and he started softening up and he noticed it himself and he would go up to people and he’d say, “Touch me. Feel me. I’m soft.” So, you know I just really gave, made me feel good to know that even he was noticing that I was, we were taking pride in taking care of him and again not to by any means condemn you know, his birth family. You know, they did what they needed to do with the funds that they had. Tammy: Exactly. Interviewee: So, you know, there’s limitations, financial limitations is a lot. It’s… Tammy: It has to be heartbreaking. Interviewee: Yeah. Tammy: I mean that story is heartbreaking. It’s such a simple thing. Interviewee: Yeah. Tammy: Yeah. Interviewee: So, I pride myself and I just, I want to build that self-esteem. It’s hard enough you know, when a child is removed it’s traumatizing and so, I want to make that transition into our home very, very easy and very peaceful and relaxing and so, you have to be very careful especially if a child has been molested. Tammy: Yeah. Interviewee: So, I take it very slow but I gain their trust and we work forward with you know, through things and make it enjoyable for them for that self-esteem. Tammy: Yeah. That’s wonderful. So, these are some things that are difficult. What has worked really well and getting help for some of the children you’ve worked with that, that just work really well?<...

In this episode, Diana shares her experience mothering a 17 year old daughter with anxiety and depression. Mentioned on this episode: NAMI: National Alliance on Mental Illness: https://www.nami.org/ Transcription [music in background] Voiceover: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a mother’s on the frontline production. Today we will listen to Diana, an Iowa parent with a 17-year-old daughter with anxiety and depression. Tammy: Tell us a little bit about yourself before or outside of mothering. What are your passions? Who are you? What do you love? Diana: Well, I enjoy biking and taking long bike rides, not competitively or anything but just kind of peddling along. I enjoy yoga and take some time for that when I can, and I enjoy writing. Tammy: Wonderful. Do you like creative writing, journaling, what kind of stuff do you do? Diana: All of that. I used to write for the newspaper when I’m just column and just kind of a life in the day of life and of mom, and that was fine. Tammy: That’s wonderful, it’s great. I want you to pretend that you’re talking to people who just haven’t had any direct experience with mental illness –   whether in their own life or anyone else in their direct family or friends- they just haven’t had to deal with it. What would you like them to know about your experience? Diana: What I would like them to know beyond just my experience and just in general but particularly with me if you see me, is that it isn’t always what you think it is and it doesn’t always look how you think it’s supposed to look. Please don’t make the assumption that we might be wrong or dramatic or overreacting, and I know it might seem like that at times, but please just put compassion first and really trust that somebody who is living a situation particularly with their own child, their own family member. They are the expert and if they say something that doesn’t really make sense to you based on what you observe of that child or that person, please just be compassionate and believe that there’s probably a lot going on under the surface or things that you don’t understand about it, and appreciate their honesty and being able to share. Tammy: Absolutely. Can you think of examples of where people have just not seen –  like they see it one way but something else is going on  – so that you just wish you could just sort of scream? Diana: Every day. [laughter] Diana: Every day. An example that comes to mind is a parent-teacher conference in which I was trying once again to gently and with a friendly face remind teachers that my daughter has a 504 plan, and that she has these accommodations and that they’re legally required to provide those to her. We were having a little difficulty and the teacher said, “Well, I just don’t think she’s anxious, I mean I don’t see it. I don’t think she has anxiety, frankly”, which is kind of a classic example. I actually appreciate the candor that that teacher showed because there are other people who are more passive about it but they certainly seem to be indicating that maybe my hyper-vigilance is causing anxiety. That’s tough to take, it’s a little insulting. There are people who sell my daughter short and kind of limit her based on, “Well if she’s really anxious then maybe she should just do this and not even try this other thing”. Tammy: I think it’s a really good point because mental illness is portrayed a certain way in the media and movies and all this kind of thing. The assumption is you could see and know what is going on with someone, but someone could be going through a whole lot and look fine on the outside sometimes, or at least be able to do that for a small amount of time whether at school, at work or what have it. Right? It would be easy for someone to not notice because they’re not living with it day to day. Diana: Right. I think that my daughter is very much like that. I think that girls, in general, are designed with being a people pleaser in mind more often, and so you might not see what you think you’re supposed to see if somebody has mental illness. I will see and hear all about it –  let me assure you  – when the wheels come off the bus later when they’re at home which is their safe space and you know which is that. Tammy: Talk about that because that’s what I think people don’t understand for so many of us our kids. As soon as they get home to where it’s safe or to the people they’re safe with all hell breaks loose as they say, it gets really rough because finally, they can let go of what they need to from the whole day. Is that something you experienced? Diana: Yeah, I have experienced that since she started school, honestly since she was five years old. The very first thing that she would report and it was a daily, and I never even put it together the those from school was, “I have a tummy ache”. Like I would say, “How’s school?” and look over and pickup, “How is school, it was good, I have a tummy ache”, every day. So, I went to the pediatrician. Anyway, so the point is that it’s very long-standing and it was a long road for even the medical professionals to realize that it wasn’t physical. Well, it was a physical ailment but what might be underneath it because a child of that age lacks the words or then even knowledge of what it is. But I think going back to what I said earlier about “Please don’t diagnose us or say that I might be part of the problem”, well, if she’s only doing this around you, what is only doing around me because she can. She knows that I will still love and accept her no matter what, and she is barely holding it together – and so are a ton of other people in school every day or at work even. They’re just waiting to be able to come undone because they perceive that to be successful and functional in our society that they have to assimilate. They have to be like the other people around them and so they’re exhausted by the time they get home because not only they had to face several stressors throughout the day, they’ve also had to pretend to feel like other people who aren’t experiencing it. Tammy:  They’re exerting a tremendous amount of energy. They’re not only in pain internally, they’re exerting so much amount of energy all day long. They get home, they’re exhausted. So what does mom get? Mom gets the exhausted –  so you get the full meltdown? So, us moms, we get all that, so we’re stressed and tired because we have that sometimes full time. Diana: Right, and then we are the crazy person because we then get on the email at 10 o’clock at night. “The following is what my daughter perceives happened today.” I realized because sometimes I would get emails where they were assuring me that wasn’t the case, I know that’s not the case. I’m relaying to you that that’s what she thinks happened and so please have some compassion tomorrow when you see her again, love up on her, and those kinds of things. You really do come across as the crazy parent because A, they don’t see that and B, as we exhibited, they get late-night seemingly insane emails from a parent. Tammy: Right, and they’re not seeing what you’re going with your child. I just think there are so many levels of what you just said that’s so important  – that it’s invisible, and we do sound hysterical a lot of the times. But ultimately this is the life of our kid on the line. So, of course, we feel that way, right? Diana: Yes, and I think that every– well, I want to say teacher but it probably goes beyond that and society, but people who are part of a system should be forced to watch like a documentary or receive some basic level of training on some of these things that they might not know. Because I think if you saw it you wouldn’t question me anymore. You’d be like, “Holy God, that was awful”. Tammy: It’s not like what it looks like on TV right. I always joke I wish my son had TV autism or TV bipolar, or TV something because it’s done in a half hour and wrapped up then nicely, everything’s solved, right? Diana: Yes. Tammy: In real life, it doesn’t feel that. Diana: Or it goes in one direction on TV. That’s another thing that I would say to people who don’t live this journey, something that I can share is, “Please don’t assume that there is a trajectory and we’re moving across like in one direction. How are things going is a minute-to-minute if not day by day conversation, and so please forgive me when I seem frustrated”. If you say to me, “Well, she seemed like she was so much better. She seemed like she was feeling better”. She did. That was two days ago. Tammy: I think that’s so important too because as a caregiver isn’t that disruptive and hard to plan and all that because you never know what the day’s going to bring. It’s not like you can say, “We passed this phase, now we’re here”. It’s constantly coming from different directions. Diana: I have said is like chasing a chicken around a barnyard. That is the movement, it is every single way. Her dad texted me because he was out of state and he had been gone a few days. He said, “How is she doing?”, and I said, “Lots of different ways. You missed four whole days, she has had 18 different plateaus” Tammy: “In the last two seconds or, yeah.” No, I think that’s really important because it does change constantly. So, as you think about the journey going on with your child, what has really been a barrier to getting the help your child needed or something you tried that just didn’t work in your case that might be helpful for people to know that this was a barrier? Diana: There have been a lot of barriers and since it did start when she was very young and progressed through these years, and became more discernibl...

Jill discusses caring for her son whose bipolar disorder surfaced during the teen years. She describes the lack of resources in rural Iowa, the criminalization of mental illness and how that affected her family. She explains how this journey as a mother makes you learn who you are as a person and how strong you can be. Transcription [music] Female Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today we will listen to Jill, a mother from Iowa, share her story about raising a son with bipolar disorder. Tammy: Thank you for doing this. We really appreciate you being here. Jill: Absolutely. Tammy: Before we get into a lot of the content could you tell us a little bit about yourself before or outside of mothering, who are you? What are your passions? What are you interested in? Jill: It’s a great question. Well, first of all, I think I’ve known since I was five years old, probably or even before that I wanted to be a teacher. My grandmother was a teacher, my aunt was a teacher. I would have to say that was my focus through high school. I went to college, I’m a teacher and I’m very passionate about it, very passionate about early childhood education. I currently decided to personally take a step back and decided to work on my Master’s degree. Tammy: Wonderful. Jill: Yeah, between doing that and teaching full-time and having two children, let’s say two teenagers at home. [laughs] Tammy: You’re busy. Jill: It’s busy. When I have a free second to breath and if I’m not writing the research paper or discussion thread I am spending time with my family and friends. That’s very important to me. I like to exercise, I love to be outside in the summer in my flower garden. That’s kind of me by myself. Tammy: So you knew early on what you wanted to do? Jill: I did and I think that doesn’t happen a lot. Tammy: No. Jill: I I think a lot of children these days are just full of pressure. “I don’t know what I want to do. I don’t know what I want to do”, and I just tell my boys I hope it’s just a lucky one. So, 20-some years I’ve been in it and I don’t ever see myself do anything else. Tammy: Oh, that’s wonderful. You love it, that’s great. Jill: I do, yes. Tammy: It’s a gift when your passion can become your work. Jill: Yes, absolutely. Tammy: Absolutely. I want you to pretend that you’re talking to other parents. What do you want them to know about your experience as raising a child with a mental health condition? What would you want them to know? Jill: I would say number one, trust your instincts. If you see something maybe that is out of character for your child, maybe something that differs from what they have “typically”, how they’ve been acting. I guess just picking up on those little cues. I look back over the journey with my son it’s been three years. Three years and three years now has gone by and I look back at some of the things and say. “Wow, I wish I would have been– went with my gut more than I did”. Does that make sense? Tammy: It does. Now with your son, was there a clear before-and-after of an onset of symptoms, did it sort of come on at a certain point in his life or did you always see it his whole life, or? Jill: No. We did not see it early on in life at all. There was no signs or symptoms at all. Probably started seeing it at the age of 15, his hormones were really coming on. When we first started seeing signs like I said looking back impulsive behaviors and things that typically hadn’t been characteristic of my son, but because some of it we kind of blamed on, “Oh, he’s a teenager. Oh, he’s sowing his oats, he’s doing this”, but then he would be fine for a while. Then well, we’d have another as well, I say now an episode of just uncharacteristically behaviors. I should have went with my gut more than I did but I did try to get some help right away, but that was difficult and that probably will come next. Tammy: Yeah, tell me about that because let me just go back to one thing. Jill: Yes, please do. Tammy: You’re bringing up a really important issue because when you’re dealing with children’s mental health, there’s a whole gamut. Some kids have things from very young like Tourette’s usually comes around to age seven, for instance, but a lot of kids have conditions that surface during the teenage years. That’s when the conditions start to have their first symptoms. As you said it’s hard to know is it just being a teenager or not. Jill: It completely was because from birth up to that point he had been a straight A student. He had been an austere athlete. He had been the kid that never broke a rule, if there was a line he was going to walk it. That’s why I say trust your instincts because as mothers we know our children better than anyone else in this world. When he was behaving some of these behaviors I’m like, “This is– Okay, I’m not sure. Are we this pushing? Or a teenager–“. Like I said we even went with were there drugs involved because drugs are so rampant in the high schools and things that I was not aware of. I guess maybe naive and I had to open myself up to that and wow, what started were these outbursts, I say outburst because it was the change of behavior. His grades started slipping a little. Socially he started secluding himself from his friends. There would be days maybe even weeks he would just stay at home on the couch and he’d want the curtains closed, and he just wants to watch movies with me. You know, “Okay, well, honey” and his friends would come over and say, “Come on, bud. Let’s go.” Typically before this kind of came on sure he would go. He’d love it, very social kid. Then there’d be times where we get over of laying on the couch. Then we would– he particularly, I remember, got in his car asked could he go to the mall to the nearest city and I said, “Sure, okay”. Called me, got a speeding ticket, was going almost a hundred miles an hour. Tammy: That’s so dangerous. Jill: Yes, and this was just a few days after we’d been laying on the couch for a while. Then I got him home and said, “Okay”, had the whole typical teenage speeches, had the whole, “We’re going to take your car”, and then two days later gets another speeding ticket. He was going 95. It was just so mind-blowing because my whole mommy gut, I call that, what’s going, “What is going on”, and so that’s when I’m like, “Okay”. Started in with therapist number one. Tammy: Talk about that. Why was it hard to get help at first? What was difficult at that time? Jill: I will be completely honest and people probably don’t want to hear this but I know as a mother I wish somebody would have told me, Iowa is horrible for mental health. I had been born and raised in the state and I will probably live in the state for the rest of my life, but I am highly disappointed with the services and help that we have. From just doing some readings I think we’re one of the worst states in the United States of America. Tammy: We are. I can feel what you’re saying  – because if I hear what you’re saying  –  this is where I’m at –  me– I don’t want read this in –  but I love Iowa. There’s so many wonderful things about our state but this is so disappointing. Jill: It is. It’s – it’s heartbreaking. Tammy: It’s heartbreaking, yeah. Jill: It’s sad and the first thing I did was say, “Okay, I need a professional” because I am a teacher. I am not a doctor. I just told my son, “Hey, I think we need to talk to somebody to figure out what’s going” because he was talking to me but not really. I think he was not sure, I think, what was even going on with himself. That’s where I was like, “Is this his hormones? Is this puberty has set in?”. He has a later birthday so he is a younger one for his class. I went and got a therapist number one, I say because it’s a long…. So went and he just– it was very difficult. He wouldn’t open up. That’s what we tried first. Then, unfortunately, he attempted suicide. Tammy: I’m sorry. Jill: Oh, yeah. It was hard. I can talk about it now because it’s been long enough but I think it was more of a cry for help like I’m stuck in my own body and I’m not sure what’s going on. I came home and he was wanting to sleep, he wasn’t sleeping at night. That was another mommy gut thing where the kid that always slept at night wasn’t sleeping at night. He decided– I saw this package of pills and I’m like– he’s like, “Mom, mom” because just he’s so smart and he’s such a wonderful kid.  And he’s just like, “Mom, I didn’t know what else to do but I took all those Benadryl and I went”. “Excuse me?”. He’s like, “I just can’t do it”. “You can’t do what?”. He’s like, “I can’t not sleep and I can’t, my head is racing. My thoughts are racing”. Tammy: He’s suffering. Jill: He’s like, “I just need some rest”. I’m like you know the mother, “Oh, my gosh”. He admitted doing it. We went to the hospital and then they once you go to the hospital with an attempted suicide then, you kind of get a little more help. Unfortunately, we had to go through an episode like that to get a little more help. We moved on to therapist number two which also involved medication. He hadn’t been on any medication until that kind of botched attempted suicide or just attention-getting. I’m not even sure what do we call it now. Tammy: Clearly he was in deep pain and needed help. Jill: He did. I think that’s– Tammy: We take it all so seriously. We need to. Absolutely. Jill: Yeah, we need to and there was no way, and I wasn’t going to take him to the hospital because his father had said to me, “Well, does he really need to go to a hospital?”. He took several Bendadryl and I t...

In this episode, we listen to Miss Diva from the USA. She speaks about raising a son with schizoaffective disorder, bipolar, ADHD, PTSD, and Seizures in the African-American Community. Please be advised that this interview contains content about domestic abuse and may be upsetting for some audience members. Transcription Women’s Voice: Welcome to the “Just Ask Mom” podcast. Where mothers share their experiences of raising children with mental illnesses. Just Ask Mom is a Mothers on the Frontline production. Today we will listen to Ms. Diva from the USA. Please be advised that this interview contains some content about domestic abuse and may be upsetting for some audience members. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health Conference in Orlando Florida. During this particular recording, you can hear noise in the background from another event in the hotel. Please don’t let these noises distract you from Ms. Diva’s story. Dionne: I’m sitting here with you and I wanna say thank you very very much… Miss Diva: You’re welcome. Dionne: …for agreeing to be a part of our podcast. Can you please introduce yourself? Diva: My name is Diva and I am called Diva because I have been through so much in my forty-four years on this earth until I feel like there is nothing anybody can do or say to break me anymore. And I feel like you can try but I’m always gonna  come out victorious because the Diva is always going to hustle – get it done for her and her children no matter what. If she has a man or she don’t have a man, she don’t need a man to make it happen. And that’s me. Dionne: Thank you. Well, tell me Ms. Diva, tell us a little bit about who you are and who you were, what are your passions? Who are you outside of and in addition to being a momma. Diva: Oh my gosh! First of all, I honestly didn’t wanna become a mom. I was scared that I wasn’t gonna be able to give my children the love that they needed like they were supposed to have. Because when I was a kid I felt like I wasn’t loved passionately enough as a child suppose have been loved by their parent and encouraged enough because my parents didn’t give me that encouragement. They gave my younger sisters that encouragement but as for me, they didn’t do that. But when I had my children I was like, “Wow!”. When I had my first child I was like. “Ohh,hhuuhh!”, you know, like “Oh, No!”. And then had my second child after I am married. And then my third and my fourth. And then I was like, “Oh no, I’m a mom!”. So I was like, “Okay, I gotta step my game up since I’m about ten thousand times more than what they did.”. So my goal was to always let my kids know that: “I love you and there is nothing that you cannot do. I will never stand on the way of your creativity. The word ‘can’t’ and ‘I won’t’ will no longer be in existence for you all.” My kids used to think I was mean because I used to give them books to read. So, they was like, “This is a punishment”. No, it’s not though my kids one of the–it wasn’t. I have been through domestic violence, my kids have seen that. Still legally married to the man. He tried to kill me and my kids. So we are still standing the risk. That’s why I say I’m that diva because I refuse to allow you to dominate my life because if I let you dominate my life, it’s like you still have your hand in my life. “Oh no!”, because I’m going to do what I need to do. I have four children: 24, 18, 16 and 14. I have an 18 year old. He has a bipolar schizoaffective disorder and the alphabet. And once–you know what I mean when I say the alphabet. Dionne: Yes. The alphabet soup of diagnosis, yes. Diva: And sometimes he has his good days, sometimes he has his bad days. And it’s like, “Whoa, wait! Hold up!”, and sometimes he wants to listen to me, sometimes he don’t. But he’s at the conference with me. He’s doing good. When we walk past to come here, he was sitting in a class listening paying attention. So it’s like, that was a first. Dionne: He stopped by our table several times ’cause he likes the candy. [laughter] Diva: Yes [laughter] Oh it’s like you’re trick or treating huh? [laughter] Dionne: [laughter] We talked a couple of times. Diva: Yes, So he’s a friendly young man… Dionne: Yes he is. Diva: …but the thing is, I found out he was–he had these diagnosis when he was six. So, being of African-American descent, in our culture we do not talk about mental illness. It’s like the big elephant in the room and if you do something about it, “Oh no, just whoop ’em!”. Whippings do not cure everything. Then it’s the next one–oh I’m going to pray it out, Oh no, pray that God gives me the strength to endure what I’m about to go through. Pray that God gives him a stable mind or me  – so I won’t go crazy and hurt this child. Because there’s a lot of times when they say things that they don’t mean and you feel like it’s directed at you and they’re just taking out their anger. Because when they do it you like, “Oh, did you just lose your mind!” and you be wanna ready to–you be ready to like, “Oh, you know what, it’s battling time. You ‘bout to go in the corner and the fight. Put your gloves on”. So, and I tell my parents all the time, “If God didn’t want them to have the doctors here to help us, he would never had put them in place.”. He will not put the psychiatrist, the therapists, made these people that have the medicines so we can help them. And all the other people, all the little people, like these conferences, to help give us the knowledge of what we can do with – outside of–when everybody else has gone home asleep, what coping skills you can use to help your child, son or daughter, go into–when they enter that poppin’ off mode. So my son–’cause I have two sons. One has ADHD-PTSD and he has suffered from seizures. Then my older son, he’s the one that has the main ones but my younger son, he’s introvert but he’s a smarty. And he just don’t wanna go yet and it’s like I tell my kids, I gave them with the analogy when they were young. I’m the head of the household so I’m the head. My oldest daughter is my right hand. And my son that’s 18, he’s my left hand and my 16-year-old, he’s my right leg and my 14-year-old is my left leg. I say, so if anything happens to one of you guys, my limbs are obsolete to me. So I said I need every last one of you guys to do what you gotta do because if you get hurt, get killed, something happens, my limbs would no longer work the same. Dionne: Alright, that’s a beautiful analogy. Diva: And they’d look at me like, “What?”. I said, “come here”. So my son just said, “What?”. I pinched him, he said, “Ouch!”. I said, “That’s how I feel” If something happens to you –  and your my left arm. So if you’re gone, my pain is there. And until you come back in one piece, whole, my pain goes away. And he was like, “Oh, got it!”. I was like, “Thank you.” Dionne: That’s a wonderful analogy of just how–I don’t think our kids realize how much they are literally, a part of us. Diva: Yes. yes. And I feel like–I used to tell my son when he was younger when he needed help when he was in school I said, “Baby, look at it this way. I need for you to get your slinky–look at the slinky in your mind. When you had the slinky here at both hand level, you’re fine. Once that slinky starts sliding down, you feel like you need help, you get that help.” I said, “Once that slinky fall all the way down, you’re out of control, you can’t get that help no more.” I said, “Once you get it started moving up and down, you can get the help.” I said, “But once it falls and go all the way across the room, there is no coming back from that. He was like, “Okay, ma.”. So a couple of days ago he said to me, ” Ma, I’m trying to be that slinky.’ And I have the strangest look on my face like, “Okay babe”. Dionne: He heard you. Diva: But this analogy was given to him when he was six, seven years old. Dionne: I know. He heard you. He heard it. That’s awesome. Diva: And it’s like it’s still there. Dionne: Yeah! Diva: And he was like, “Mom, I’m still that slinky.” And I’m like, “Okay love. When you need that help, you tell me.” Dionne: Yeah Diva: Because if he hear voices, he tells me. Dionne: That’s great. Diva: He’s like, “Ma, they’re talking.” And I’m like, “Okay babe,” because I’m one of those parents, I listen. Because when I was a kid, it was be seen and not heard. Dionne: I see. Diva: And I was raised up in the church and, people ask me, “Why don’t you go to church anymore?” Because the people that raised me, I feel like they’re the biggest hypocrites there is. Because you tell me to do as you do, do as you say but not as you do. Dionne: Right. Diva: But then the whole entire time, you’ve been lying to me. You’ve been hiding stuff. You’ve been sneaking around! What do you want me to do? How do you want me to take this and God said, “Do not do this,” and you did it! So you want me to feel this way? So, I tell my mom, we were talking about something and I said, “Ma,” and she was just, I had to you know, “Ma!” She was like, “What?” I was like, “Look. For everything that you come at me in the Bible with, we’re going to come back with you on this one right here!” She just said,” Lord.” Yes! So she said, “What?” I said, “The Bible tells you, children obey your parents and the Lord.” And then it comes again, children obey your parents and the Lord, for this is right that that days may be long upon the Earth.” I said, “This is what the scripture your parents hate!” Should parents, “Provoke not your children to wrath!” I said, “Woman, what are you doing to me?” And she said, “Uh, shut up and get off my phone.” I said, “No, you’re provoking me to wrath! I mean, you’re provoking me!” I said, “So, you are not listening t...

In this episode, we listen to Melissa, a mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and may be triggering for some of our audience. (See below for transcription.) Suicide Resources: The National Suicide Prevention Lifeline is 1-800-273-8255 The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. Trans Lifeline – Trans Lifeline is a national trans-led organization dedicated to improving the quality of trans lives by responding to the critical needs of our community with direct service, material support, advocacy, and education. Our vision is to fight the epidemic of trans suicide and improve overall life-outcomes of trans people by facilitating justice-oriented, collective community aid. The Trevor Project – The leading national organization providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer &amp; questioning (LGBTQ) young people under 25. You Matter -This is a safe space for youth to discuss and share stories about mental health and wellness, created and administered by the National Suicide Prevention Lifeline. You Matter blog posts are written by a rotating Blogger Council of individuals between the ages of 13-24 that are passionate about suicide prevention and mental health.   Transcription of Just Ask Mom, episode 17 (0:00) (music fades in) Woman Speaker: Welcome to the Just Ask Mom podcast where mother share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today, we will listen to Melissa. A mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and maybe triggering to some of our audience. (music fades out) Tammy: Hello. Can you tell us a little about yourself before or outside of parenting, what do you love? Who are you? Melissa: My name is Melissa and I’m a mom here in rural Iowa. I farm with my husband in a small community. I love the environment. I love watching our children grow. Just being outdoors, reading, that kind of thing. Tammy: You like watching lots of things grow, it sounds like. Melissa: Yeah. Tammy: That’s awesome. I want you to pretend that you’re talking to peers of kids that are going through mental health difficulties and their parents. What would you like them to know about your family’s experiences? Melissa: I would say that our experience as parents with a child with debilitating mental illness – would be to just maybe ask, be inquisitive. Try and find out, not in a nosy type of a way but just– so maybe you can learn a little bit more about the situation and not just shut the doors essentially because it’s very challenging on a daily basis. When you’re feeling the doors slammed by parents or peers that don’t necessarily know the story, it just makes life that much harder.  (2:00) My child has a lot to give to this world. He’s beautiful and he’s kind but he just struggles with certain things. But I think his life as a youth could have been much easier if some closed doors would have remained open. Tammy: You bring up a really good point because a lot of times, if our children are sick, let’s say if they have a physical illness or the measles or what have you, people would naturally say, “Oh, how is your son doing?” Right? Melissa: Right. Tammy: They would naturally ask. Maybe people are afraid to ask us or talk to us. They shut down or shut us out sometimes. Is that right? Melissa: Yeah. I would say that. I know it is not the exact same thing but I spend a lot of time thinking about it. I kind of wonder if on some level, it’s how people who are diagnosed with AIDS in the 80’s feel. Tammy: Yeah. Melissa: So instead of feeling that love and that warmth when they were diagnosed with something. They were judged and I feel that very much in the mental health space here. In a lot of ways, it’s how the kids and the patients are treated. How many cardiac patients or cancer patients do you know that need to go from one doctor to another? And they’re transported in the back of a sheriff’s car in handcuffs. Tammy: Exactly. Melissa: That’s how they’re transported. Tammy: When they’re most vulnerable and in the most pain. Melissa: Right. Tammy: Right. Melissa: They’re actually taking– yeah. They’re handcuffed. I know my son had a really hard time one time because he didn’t even have a seat belt on so that gave him anxiety. The person was driving and on his phone. I think you just feel very out of (4:00) control, anyway; when you have something like this. Tammy: That’s a really good point. Even when you think about all the years, all the trying to help your child, what has been a barrier to getting the help your child needed? Something that– it’s a barrier or just didn’t work. Melissa: His situation is very severe. I think some of the barriers that exist are constant therapists that are a good quality. When you’re living in a small space, people come and go. There’s a high burnout rate. Tammy: So consistency– Melissa : Consistency Tammy : — really no consistency. Melissa: There’s a very little consistency but I would say the same thing even with psychiatrists and getting meds. Because currently, the situation is now he’s an adult, and in the acute care setting you go into the hospital and– he has severe depression. We’ve been in and out of the hospital in an acute care setting maybe thirteen times in the last eight years and in the last six months probably five or six times. Tammy: Wow. Melissa: The problem is that continuity of care because you go into an acute care setting and his is suicide; just not wanting to live. You’ll see a whole new team of medical professionals and they’ll have an idea of what’s happening. He’ll go into another space and then they have their own idea and their own med recommendations. Unfortunately, for the patient you’re really not getting the (6:00) highest quality of care. I will say that our experience in the last six months has been even more challenging because he went to a hospital in Central Iowa. When I got there, they had actually prescribed him a medication that he had overdosed with. Tammy: Already before they prescribed it? Melissa: Right. Tammy: Oh. Melissa: But now that he’s an adult, I’m not given all of the information and so he was discharged with 90 pills that he had already OD’ed on as a youth. Two weeks later, he OD’ed on them and ended up in that same ICU. When I talked to the behavioral health staff, I said, “Did you look at his history?” She said, “We’re not required to do that. That’s not something that we automatically do.” Tammy: That’s shocking when you think about. Melissa: Well , And my reply to this person was, “Well, okay. So, if I came in here with a cardiac problem–” Tammy: Yes. Melissa: “–or you know some other chronic issue, would you not look at maybe some of my past history; even meds, anything? Just to make a better and more informed choice.” She said, “Well, on this floor, we just don’t do that. It’s not our policy.” Tammy : Oh– Melissa : In Iowa, we’re facing a really challenging time getting access to care maybe more so that other states. But — I just looked at the woman and I just said– no things have changed and we are seeing less and less help. I can see the acute care institutions are overwhelmed. Tammy: Absolutely. Melissa:  They are completely overwhelmed – but I looked at her and I just said– I think what I’m hearing is now these people don’t have access to chronic care –  which they don’t as an adult. (8:00) Currently the situation is that these people who are the most vulnerable are now going to you for an acute care setting, which is also very limited. We’re not even giving them that quality of care. Tammy: But then even afterwards there’s no sub-acute to keep them well. They just send them up right back into acute again. Melissa: Right. Right. Or discharge them and refer them again to outpatient services. Tammy: You mentioned something that’s really important and you’re at that key point, you could speak to it. You dealt with it when your child was a minor and now he’s no longer a minor and your role shift whether you want it to or not, right? Melissa: Right. Tammy: Can you speak a little bit to that? When your child, well this differs too because sometimes it’s even 12 when they say now the kid gets to have more input but — Melissa : Yeah. Yeah. Tammy : – at least when you’re the mother of a minor child, you can tell the doctor, “Make sure to remember this. Remember this.” But you don’t get to do that anymore, do you? How does that work? Melissa: You don’t get to do that. In fact, at this facility that I was just talking about, once this discharge happened. I wanted to talk to the psychiatrist. I said, “Okay. This is the second admittance. This is what’s happened and it doesn’t sound like you have all of the information.” And I’m like, “I would love to– just like a five-minute conversation to make sure that you have the entire picture to give you history.” He wouldn’t even talk to me. When you’re dealing with a young adult, I personally didn’t want to take away all of his choices and make all of those c...

In this episode, we  hear from John “Tank” Miller of Delaware. A Family Advocate and father of a 19 year old with mental health challenges, John discusses his mental health advocacy through social media and how he uses “Tank Mentality” to provide those with mental illness encouragement every day. Become part of the Tank Mentality Movement: Follow on Twitter @tankmentality  Follow on Facebook: tankmentality/ Transcription Female Voice: Welcome to Ask the Advocate. Where mental health advocates share their journey to advocacy, and what it has meant for their lives. Ask the Advocate is a Mothers On The Front Line production. Today, we will hear from John ‘Tank’ Miller of Delaware. A family advocate and father of a 19-year-old son with mental health challenges. John discusses his mental health advocacy through social media, and how he uses Tank mentality to provide those with mental illness encouragement every day. This interview was recorded at the 2017 National Federation of Families conference for children’s mental health. [background music] Tammy: Hello. So, we’re just going to begin by asking you to introduce yourself, and telling us a little bit about your advocacy organization, and what you do. John: My name is John Miller from Delaware. I am a father of a 19-year-old with mental health issues. I’m here today to talk about my movement, Tank Mentality. Tammy: Yeah, I love the name. Why don’t you tell us a bit about the name? John: Well, about the name, the name actually was the origin of me, and that came from playing football. 9th grade year, I had a football coach who lined me up, and I was excited. I was just putting on pads for the first time as a high-schooler, and we ran a drill called Oklahomas. The object of Oklahoma is to not get tackled. Tammy: Sounds like a good incentive. John: So, I grabbed the ball, and the rest was kind of history. I ran through my whole entire team, and it got to the point where he was like, “Nobody can tackle you. We’re gonna call you Tank.” And, that’s when Tank was born. Tammy: And how do you see Tank as transferring to mental health? John: Because as a tank, you’re in the front line. Tammy: That’s right. John: On the front line, you’re going to take some punishment. So, on the front line, you have to have that armor. So, I incorporated Tank as far as mental because everything in life is mental. Tammy: That’s right. John: So, you can’t do a thing without thinking of things. So, it’s just was one of those things where I’m like, “You know what? This thing is bigger than me. And, it started with me, but it’s not going to end with me.” Tammy: Awesome. So, tell us a bit how you got involved in advocacy, to begin with. John: Well, I got involved with advocacy, it was something that I was naturally doing. To give you a little background about me, I work as a restaurant manager. Because being a manager as you know, you’re managing a bunch of teenagers and younger people, so you’re always molding young leaders, and you’re supervising them, but at the same time, you’re kind of like, as I say, growing them. So, I actually listened to a lot of their challenges, their stories, and seeing some of their strengths and weaknesses, and I was using my advocacy to help them better. And, it was just something I was naturally doing, and I had the opportunity to do it as a professional. It was just like a smooth transition because I’m like I’m already doing this. Tammy: Right. I love it that though because you say that like that’s so natural. I’m not sure all restaurant managers are thinking of themselves and their role as developing young people. I think that’s pretty remarkable that you, even at that point, that’s how you were seeing it. I have to just point that out, I think that’s remarkable and wonderful that you took that on. John: Well, that goes down to my upbringing. My grandmother put that into me as a young kid. I’ve always had that in my life, and she’s been a blessing to me. So, just listening to her and some of the values that she instilled in me as a young leader. Like I said, it was almost natural for me to transfer that on to other people because that’s what she believed in. She believed in helping others, and she would give her last to help someone else. Tammy: That’s wonderful. And, I can see that it has definitely rubbed off on you, so that’s really great. John: Yes. She’s my biggest inspiration. God rest her soul. Tammy: That’s wonderful. Did you want to tell us a little bit about the kind of things that Tank mentality involves? Do you do programming or is it more an idea? How does it work? John: Like I said, I have a business mindset as well. So, I am an entrepreneur and, being left-handed, I think outside of the box, so I’m very creative in some of the things that I do. I always wanted a brand. Nothing really stood out. So I was like, I had to find something that I could make personal because, you know, if you’re not passionate about something whatever you’re doing is going to fizzle out. So, when the idea of Tank Mentality came on, I didn’t even know how powerful it would be, but it was just like, “This is it.” I had a vision for it, and I started hash tagging it, then I would just put quotes up because I always do that. I believe in waking up and putting something positive into the world, no matter who it reaches. And, I just started hash tagging it. It became a baby, and I started watching it grow. Certain people were coming to me, and they would be like, “This is powerful, this is awesome, what are you going to do with it?” At the time, I didn’t know. So I was like, it was new to me as well. I decided to put it on a t-shirt, and I started wearing it. First, like I said, it was about me, I had it in my favorite color, of course. Tammy: Can I just say this is an awesome orange? John: Thank you. Tammy: I love it. You just need like a little purple scarf, and then it’s like my ultimate ensemble because those together, I love. John: I have it in purple, too. Maybe I could get you a Tank Mentality shirt. Tammy: Absolutely love it. John: So, when I said, I’ll put it on a t-shirt, and I started wearing it, like I said, I am the brand. People would ask me, “Hey. What’s that shirt?” and I would tell them my story, and people will just be in awe of the things that I’ve overcome. Tammy: Can you tell us some of that story? John: Okay, I’ll keep it brief because it’s very long. Growing up overweight, I had faced problems in being bullied, you know, teased, low self-esteem. It kind of put me in a position where I had self-doubt, and you know you’re great, but, you know, when people tell you otherwise, you’re like, you kind of have that doubt, you’re like, your self-conscious about yourself and your abilities. So, football was my outlet. Because, like I said, I could put on a mask, I had a helmet. And, I could go out and take some of that frustration out on my opponents. So, believe it or not, football saved my life, and it actually brought some peace to me because, at the time, I was a depressed kid, going through some issues. And around that time, my grandmother had gotten sick. So, the person that I looked up to the most, I would watch her slowly perish in front of my eyes. So, at that time, I was going through a lot. Like I said, football was my outlet, and I excelled on the football field. It’s just crazy how the world works sometimes. Tammy: Right. When you needed something, somehow that came into your life, right? John: Yeah. So, after football, of course, I graduated high school, and Grandma was still sick, and they didn’t want me to go away to a faraway college because my grandmother was sick. So, I went to a local DelTech, which is a local two-year-old school, I went there, stayed home and worked. Football pretty much was over. So, I had to find something that will take the place of football because that was my outlet. It was cooking and managing, bringing up other kids, and that was actually keeping me afloat because, at the time, like I said, I was going through depression, doubt, whatever that those things, whatever I was dealing with. Grandmother passed at ’99, but I made a promise to her that I will graduate college. I was the first person in our family to graduate college. Tammy: Congratulations. That’s huge. John: So, that was huge for me because it was like, I don’t know, it was like when your why is bigger than you. Like, you can do things outside of your mind. So, that’s the part Tank Mentality has started building because like, the things I was doing were not about me anymore. So, I graduated college, became a manager, was working, managing. I’ve been in management now for, I don’t know, say, about 15 years now. A lot of people actually came across in developing different leaders, and they’re going off to do awesome things, then come back two years, say, “Hey. I remember you helped me.” It just feels good to know that you have impact on other people’s lives. Tammy: Absolutely. What I love about your story, and I love how you said that when your why is bigger than your you, right? Because, you know, even when you’re talking about the early days in managing at the restaurant for you, this is the same with a lot of children’s mental health advocacy. A lot of us get involved in it because we’ve had to navigate it, and when you turn from focusing on just navigating your own problems to helping others. It does give you so much strength, right? John: Yes. Tammy: I mean, it really feeds you, feeds your soul and it’s so powerful. I just really appreciate that you were so wise ...

In this episode, we listen to  Andre Minett, a father of two, husband, and social worker. He discusses his experience advocating for foster children and his own experience as a father with a child with health condition. Transcription [background music] Female Speaker: Welcome to “Ask The Advocate” where mental health advocates share their journey to advocacy and what it is meant for their lives. “Ask The Advocate” is a Mothers On The Front Line production. Today we will hear from Andre Mina, a father of two, husband, and social worker. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health conference in Orlando Florida. During this particular recording, you can hear music and noise in the background from another event in the hotel. Please don’t let this noises distract you from Andre’s story. Tammy Nyden: So, I’m just going to ask you to introduce yourself. Tell us a little bit of who you are and then the kind of advocacy work that you do. Andre: Okay. My name is Andre Minett. I’ve been a social worker since about 2002. Definitely, this is what I do because this is the only thing I’m good at. Tammy: I doubt that, but, okay.Andre: So, I’ve been working with children especially since 2002, right from Miami, D.C., now, here in Florida. I’ve been doing this work kind of a long time. It’s funny when I look at my resume, and then I’m like “man, I’m old.” Tammy: That happens quickly. Doesn’t it? Andre: Yes. My oldest son is about to turn four, my youngest son just turned two. I’ve been married for seven years. That’s kind of the highlight of my career, really. Tammy: Right, right. Those are fun ages, too. Andre: Yes. That’s where the real work begins, you know. Tammy: Yes. Andre: That’s where you understand everything you have already done, you know. Tammy: That’s right. Tammy: Tell us about your advocacy work. Andre: So, I’ve been advocating for children for a long time. You almost don’t even look at it as advocacy, it’s just something that you’ve been doing for a long time. I’ve been working in foster care. I began my career working in foster care and so to advocate for a lot of those kids who really didn’t have parents who were able to advocate for them. I became their parent. I’ve been training foster parents on how to raise kids, even though, I was about twenty-two years old and telling a fifty-year-old woman – and men –  how to raise their kids. It’s kind of raising their kids, raising my kids, that they have custody of. The way we kind of wanted and for them to be ready. It’s kind of hard too, because, you know, you have to set a standard of how you raise your own kids. You have the ideologies and all that stuff, but, you know, when you say that to a parent, who’ve been spanking their kids for a long time, like “don’t touch my kids”, you know? Yet I do it in the most professional way as possible. But, you know, you check on them, and you do things like that. So, I’ve been advocating for foster children. At one point I had my own mentoring agency, where I took kids in a city who were underprivileged, and kind of raising them that way because the Foster Care System, you kind of had the whole zone, what you can do and how you can do it. Tammy: Right. Can you talk a little bit about working with the foster kids? Where are the areas were they were really needed an advocate to help them out? I’m sure there’s many. Just pick a few. Andre: I mean, even in the court systems, where those custody battles of determining parental rights for adoptions. So, a lot of the foster parents and the parents, they have to kind of navigate through that and think, “look, what is the best thing for these kids?” Because that’s really all came down to. It’s kind of, having everyone see eye-to-eye. So the court system, you didn’t have to advocate within the system of the foster care system because I was privileged to be a part of a therapeutic foster care system with a private organization, but you also have to deal with the state. That was kind of our managing entity to work. Tammy: So, did you do therapeutic foster care yourself at any point?Andre: No. Tammy: I misunderstood. But you work with the agency that did it? Andre: I just worked with the agency. Right. A lot of the times, you would want to try to transition a kid from one home to the next home because that’s right for that kid. Sometimes the state would say, “okay, look, just put him in a home,” and you have to say, “look, here’s the plan, here’s the plan that we have,” because you have been attached to that kid and you kind of know what’s best for that kid, and you see that kid maybe five to six times a month, you know. Tammy: So talk about that of it, because I think, in the work we do, we talk a lot of times about how the parent’s the expert, but here, you have kids who their parent can’t advocate for them at that moment. So, the closest thing they have to that could be, this person who’s working on the system on their behalf who knows them as opposed to someone else who they might get passed off to as they only met them. How do you navigate that when you know, like, you know a particular child, you know them? Andre: Well, I think, the best thing to do, and somebody told me when I first started social work. I said, “what does making you–” as she was a parent, that’s one of my fellow social workers, I said, “what makes you a great parent?” I said, “does a social worker can make you a great parent?” She said, “no, being a parent makes me a great social worker.” You see some of these kids in these situations when their biological parents are, you know, I’ve had parents who were struggline on drugs but still wanted their kids. Tammy: Right. Well, of course. At that moment they needed to help themselves so they could help their kids, right? Andre: Right. A lot of times they don’t know that. That’s the hard part. Because you have this six, seven-year-old kid who wants to go back to their parents who probably even sexually abuse them. You have to say, “look, there’s help.” You have to really be non judgmental when it comes to advocating between the kids and their parents. I was twenty-two when I started and a lot of these parents who were about twenty-two, twenty-three when they had their first child. You know, I couldn’t imagine them, besides professional work, my personal life is a little bit different. So you could understand how some might have a personal life and think it is okay to have their kids in the home when they’re doing drugs but they’re downstairs. It was kind of difficult just kind of having the parents come to an agreement, like, “we know you understand, we know you love your child, every parents going to love your child, and there’s a way that we expect things to happen for your child.” So, navigating between that was sometimes difficult, but you know, when you kind of come with a non-judgmental spirit with some of those parents, and say “this could be anybody.” Even myself if given the wrong situation. So, you educate the parents, that takes a while. Yes, it’s a system, that could take a while, even longer, but, at the end of the day, when everyone’s their best interest is the child, and that’s it, when you can actually really say that the best interest is my child, this child, and all the kids I have – somebody asked me, “how many kids do I have,” I’d say that I have hundreds, because it’s just, it’s hard to look at somebody’s thirteen, it’s hard to look at someone who is six, even a baby. To say, “look, we’re going to do the best thing for this kid,” and I took them as my own. I honestly felt like the only way I could actually do this child justice is to actually think that this child is my own. And that’s hard, but I’m so glad that I did it when I was twenty-two years old because I could take it home to nobody. It was difficult, but, you know, it needed to be done. Tammy: In the work that you do, have you been doing any of this work since you’ve become a father? Andre: I… Yes. Tammy: Then had that change the dynamic at all of how you went to work, how you felt doing your job? Did it adjust anything for you? Andre: Being a father is a lot, it kind of put everything in perspective. Because I really thought that I really knew— Tammy: And first of all, you were twenty-two, what twenty-two-year-old doesn’t know everything? I mean, let’s just start off with that. Andre: Exactly, exactly. But at twenty-two, I realized that I had a lot to learn but I’ve also realized that I had a job to do. So, it was kind of navigating between that, it was like, okay, look, I would tell these fifty-year-old parents on how to raise their kids but I got to… But you know, being a father is a lot. So,my son was diagnosed with Sickle Cell. Tammy: Oh, so you have experienced also with a child who has health needs. So that’s helpful for you to relate. Not that you want that to be the case, but— Andre: No, but, it put in perspective some of the things you do. Then, honestly, how some of these parents really felt. When the Cancer Center calls you when your son is two-weeks-old, and you’re only thirty-three years old, and, I don’t know if my kid is going to live or die, because you don’t know anything about the disease, or anything. So, the advocacy that came from that, saying, “look, okay, I already love my kid, he’s two-weeks’ old, I’m not giving him back.” So, thinking of kind of where that comes from or what you had to do as a family. Then it kind of puts it in perspective, some of these parents and what they’re going through. When they’re hit with certain situations at such a young age or old age, or whatever it is, what I need to now do? So that kind of helped bring some of that stuff into perspective and kind of see their...

In this episode, we listen to Cheryl who overcame and found the new Cheryl.  This mother of three shares her powerful story of overcoming trauma and serious illness to advocate for her children with special needs. Please be advised that this episode contains discussion of sexual abuse and a suicide attempt. Transcription Voiceover: Welcome to the Just Ask Mom Podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will hear from Cheryl who overcame and found the new Cheryl. Please be advised that this interview contains some content that may be disturbing or upsetting to some of our listeners. Also, this recording was done at the 2017 National Federation of Families for Children’s Mental Health Conference and there is background noise from another event taking place at the hotel. Please do not let the background noise distract you from Cheryl’s story. Tammy: So hi, tell us a bit about yourself. Before outside of mothering, what are your passions your dreams? Cheryl: I’m a mother of three and my youngest had the unique passions I should say because everybody thinks that everybody have a disability. Some of them you can see it and some of them you don’t. Tammy: That’s right. Cheryl: My passions are education awareness and I’m learning that I have more passions as I’m going through my journey and each journey is different. My favorite thing to do, I picked up sewing crocheting and learning how to relax. Tammy: Yes. That is not so easy. Ironically it’s not so easy, right? Cheryl: No, but it is and you would know why it’s not easy. Tammy: That’s awesome. And so I want you to pretend that you’re just talking to just the general public is getting to hear what you have to say. What do you want them to know about your experience? What do you want them to understand? Cheryl: I am a 45-year-old African American and my two kids, my two oldest are 25 and 21. So the way I raised them was totally different than when I raised my 15, soon to be 16. Each of my children they saw experience of me, but my sons saw the worst. I was in an abusive relationship. I’m originally from Philadelphia but I went down south and I found out that all my life I was a caregiver and I didn’t know how I’m just it doesn’t mean nothing. I was taking care of me. I was taking care of my kids, I was taking care of my husband, taking care of my mom, my great aunt. You know, anybody, its just everybody would come and say, “You know how to be a caregiver”. So in my bottom, in my journey, when I was going through my abusive situation with my husband I just said, “When I hit the bottom, time to go” I just up and I left thinking that my son will need counseling for me just up and left. I said, “He’s going to need that because he was so young he don’t need nothing” I learned that he was– his unique gifts was coming out and I didn’t know what this is or anything and nobody wouldn’t tell me what it was. And I have all these questions and answers and nobody. So, my mom always taught me if you don’t know do your own research. Don’t believe what other people say, do your own research. Tammy: Right, good for her by the way. That is pretty awesome but go ahead. Cheryl: Yes, so I started doing my own research. I didn’t know what IEP is. I didn’t know why they did all these tests and everything else. The first thing I had to do is stop blaming me, I guess. As a mother that’s the first thing we do is blame. Tammy: Yes it is. Cheryl: I was in a relationship. He beat on me because of that. I didn’t take all my medicine, all my vitamins and everything. As that went on I found out that it wasn’t. So I find out that I went to therapy. Don’t think I’m crazy or nothing but I start seeing my mom and my dad. Now my mom and my dad died in 1994 and my dad died in 1981. This is now 2008 when I’m seeing and I’m actually– they are actually talking to me. People thought I was crazy and I’m like, “I’m not crazy. I’m actually seeing my mom and my dad” and I started seeing flashbacks of the things that I saw at the age of two, four at five. I find out that my mom was abusive too and I started getting headaches so bad, it was a migraine, and I had all the signs of that. The doctors told me that it’s a brain tumor. I’m like, “I’m not claiming that. I’m not. My mom and my dad say it’s not. They did” I’m like, “But my mom and my dad say not, its not”. And I was like, “Okay, you all don’t know nothing. I’ve got to go to another one” They said another thing. So one night I’m like, “God just give me, just give me the faith and the confidence that something is wrong”. My mom and my dad came and they was arguing. Like literally was arguing at each other. But one on this side one isn’t and my mom said, “It’s migraine” and dad say, “It’s constant headache. Migraine … constant …” Why? I’m like, “What the hell is going on?”. And then they both turned around and said, “Go back to where you was in Philadelphia before you left to South Carolina”. Tammy: When you were young? Cheryl: Yes, before I left to go to– when I left Philadelphia I went to Thomas Jefferson and I came back and I was going to different high schools and everything else. Tammy: Oh I see. Cheryl: And they say, “Go back to where you–” you know, the doctors that you was before. They think I’m going to be crazy. I did and then I found it was like they use constant headaches now more. I’m like, “I’m telling you, check for clusters and migraine” they were like, “Well how–” I said, “Just please just do it. I don’t want to tell you how but do it”. And then I start getting flashbacks of my rape. Tammy: Did you know, remember that or was it like the memory that resurfaced? Cheryl: It was resurfaced and I blame my mom for it because that was the time in July that she passed and it happens I got raped twice the same day, a year apart by the same guy. And I’m always just blaming and the image and everything else. So then I found out that I got PSTD and it’s like a certain man. I couldn’t go around and oh I smell and everything. Tammy: So your body remembers this? Cheryl: It was starting to remember and I was starting to read and I found out that some things are hereditary. I found out that the migraines and my dad had clusters, which I found out that men don’t have migraines, they have clusters. So I started doing my own research and stuff. For me it was I get all the side effects of a  migraine. So, the dizziness, the passing out, and everything else. But I still didn’t understand why my dad was abusive. The rape was coming up and everything else. Then it dawned on me, I was like, “Okay I did what I did. I did what I was supposed to, I called the cops. I did everything. Why he came back?” and I didn’t know and that was a burning question that I need. But in the process I let myself go and I have a child that don’t know nothing and I’m trying to figure out what it is. I let myself go and my self-care, my self-worth, and everything else. And when I looked at my sisters and my other friends and family I thought, “I need help”. They said, “You strong. You don’t need no help”. Tammy: It takes strength to ask for help. Cheryl: And I’m slipping, I’m telling you I’m slipping, I’m slipping, I’m slipping, and its not where it is and I’m seeing every time I go to the hospital for two weeks to a month my child is not speaking and you not and I find out that when he’s at my sister’s or at whoever they were. To tell you the truth I didn’t know who. They say one thing and then I find out later on in life it was somebody else. Tammy: I see. Cheryl: So now you’re telling that he– you didn’t even want him. I had a doctor say, “Get your affairs in order” I’m like, “I’m not going down this way. I’m too young”. You know what I’m saying?  Then more research and then I find out they were giving me at that time, in 2010, they gave me– I was on 20 medicines. Tammy: 20? Cheryl: 20. Tammy: Oh my gosh. Cheryl: And a patch. I was on Fentanyl, I took it three days and I said, “No. I’m sleeping. How can I take care of a child?” and then I find I start doing my own research and what medicine worked with this and I got so bad that my child don’t even want to take his medicine because of the journey that he saw me with. And I said, “I had to get better because of him” and if I can’t do it nothing else I had to do it for my three kids and it was a journey and nobody wouldn’t help. None of my family would not help. They used to say, “Oh you got it. You don’t need me. You’ve got this. You’re strong”. I’m telling you I’m screaming. I’m telling you I need help. No one. All they wanted was money because that’s I wasn’t given. When they called me and they like, “Do you have? Do you have? I need, I need. Can you watch? Can you do?” and I came with it, but now it’s my turn to lean with you. I’m not asking you to lean on for a minute. You know a minute, not a long time. I just need strength. He won’t do it and I lost everything in that process. I lost my house. We went into a shelter, I lost everything. My son saw me at my worst and he was mad at me. Tammy: How old was he then? Cheryl: At that time he was, I would say around about eight and nine when we went into a shelter. Tammy: How heartbreaking. Cheryl: He actually saw that my sister took it right under me and everything. Why would you do that? So me and my son went to– its called Ocean Avon Cherry. He is supposed to be going to school but state policy is from six thirty till five they come here and see if I can find a house, I mean find a place. For four days, four. I had my bags, my ID, and him. Th...

In this episode, we listen to Suzette Southfox, a Southern California parent of a 19 year-old son with depression, anxiety and Autism Spectrum Disorder. She tells us about her over ten-year journey with children’s mental health. She discusses the importance of honoring the strength of our children and others with depression who fight each day to get out of bed. Transcription Voice Over: Welcome to the Just Ask Mom podcast, where mother shared their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today, we will listen to Suzette Southfox, a Southern California parent who lives with her 19-year-old son who has depression, anxiety, and autism spectrum disorder. She has been on the Children’s Mental Health journey for over ten years now. This interview took place at the 2017 National Federation of Families for Children’s Mental Health conference. Tammy: Just tell us a bit about yourself. Suzette : Sure. My name is Suzette. I am a tired mom. I work in the Behavioral Health Field in Southern California. I’m an artist and I’m a writer and a performer. I love to communicate and chat with folks and and create art when I can. Don’t get a lot of chance to do that these days but that’s really what brings me joy. Tammy: Oh, that’s really great. That’s awesome. What kind of art you do? Suzette: I do a lot of reflective art. I do a lot of spoken word poetry. Tammy: Oh, wonderful. Yeah. Suzette: I do spoken word but I don’t have a whole lot of time to do that. I recently did something for a friend of mine who was just ordained as a Unitarian Universalist minister and I was, I was honored to be part of the ordination and I got to do this, it was fun. Tammy: That’s exciting. That’s awesome. I want you to pretend that you’re talking to parents who are just beginning the journey. They just received the diagnosis for their child of a mental  health condition or maybe they even haven’t discovered a name for what is going on yet, they’re just trying to figure out how to help their child. What would you say to people with that experience based on what you go through? Suzette: That’s a wonderful question and out of all the people that I would like to talk to  – and there are  many, many that I would like to speak with – the family that’s really finding themselves newly in the world of childhood mental health and behavioral health issues, I would love to talk to them and I would love to tell them that they’re not alone even though they feel like they’re alone. They’re in a very special club which is one that not a lot of people want to join, but they find themselves in. Tammy: Right. Suzette: One of the things that I did not get early on and my son was diagnosed around nine or ten years old with ruled out pediatric bipolar disorder and things were very difficult. It wasn’t until he was 16 when the psychiatrist said, “Was he ever tested for autism?” We said, “Are you kidding me?” So, people, weren’t asking the right questions, but once we found ourselves in the world of IEP’s and special ed programs and all of this, we never met another parent. None of the programs ever had, “Here’s information for your parent,” or you would think that the psychiatrist or the psychologist would say, “Here’s your brochure. Welcome to the world of pediatric mental illness. Here is your road map.” They don’t give you one. Tammy: Absolutely not. Suzette: No, they don’t and if you’re lucky enough to have someone with lived experience, you may get a road map but it’s so challenging. Finding those other parents and finding what is available is so difficult when you’re dealing with just the stress and the crisis. I was shocked to learn in my area that there was a whole guide for all of the programs and services but it was for other providers. It wasn’t for families and it took me to get into working in the field to actually discover this. Tammy: Is that what motivated to get into the field? Suzette: Well, that was one reason. I work with the Faith community for a really long time and what I discovered was the needs and the stress of navigating my son’s challenges. They were taking a toll on my working life. Before we got the diagnosis either I would call in sick, my wife would call in sick. We would be having to leave work. We knew that one of us would probably going to lose our job. She took an early retirement to stay at home because at that time, my son couldn’t get out of the car in the morning. He missed 125 days of school because of anxiety. As we’re going through all of this, we have support of the school but we just didn’t know other families. I think it’s so important to not only tell folks that they’re not alone but there are networks. You just have to be told where to find them. Tammy: Absolutely. Suzette: Yes, and that’s the biggest challenge, I think. Tammy: I think that’s so important because I know my own experience in talking to other people sometimes the most helpful information I’ve got are from other parents, you know, that have been through it. They all checked out this program or this and without that network, without some way to start, you do feel lost so I think that’s really good advice. Suzette: Yes. There’s a lot of despair also. At least there is and there has been with me and one of the things that I have learned is there’s a whole continuum of what you go through and it’s not linear. It’s not like, “Okay, I’ve gone through crisis and now I’m balancing and I’m moving into advocacy and when I get into advocacy, boom, I’m done.” No, it depends on the day really. Tammy: Absolutely. Suzette:  You can go through that continually. I think one of the things that I would want new parents and new families to know is the despair and the concern is visceral, it’s real. It’s probably not going to go away but if you learn to kind of make some space for that and make some space for dealing with it, it gets a little bit easier. Tammy: Right. Suzette: I think the biggest problem that I have, and this is really funny, we’re talking about self-care earlier, is when people say, “Take care of yourself.” I know that but it is so difficult to hear because it’s like, “What do you think I’m doing?” Tammy: Right. Suzette: I’m trying really hard. Tammy: Exactly. Suzette: Sometimes, just getting up in the morning is like, “Whoa, it’s a win.” Tammy: Exactly. Suzette: So that’s important and I know self-care is really, really the key, but I think that we need to be a little careful how we talk about that. Tammy: Absolutely. Suzette: Yes, it can turn people off. Tammy: And we don’t know of access to do the same things to care for ourselves. I think that’s another part of it is what does that mean and the context you’re in at the moment, what can that mean for you, right? I think that’s really important. Suzette: True. Tammy: Absolutely. As you’re thinking about people who are navigating this early on and it is hard and is lonely and I like the message you have. I do think we can get to a point where we feel like it’s a new normal. We’ve accepted it. We’re functioning. We don’t feel torn apart all the time but then something new will happen and you go through it again. I think it’s good to know that. It’s good to know you will actually function at this level. You might not feel like it when you first hit with it, but I don’t think you’re even done and I think that’s important to hear too. That’s not a bad thing. Suzette: Yes. Tammy: But knowing it’s important because if you don’t, the first time it happens again, it feels devastating. Suzette: Yes. Tammy: But if you don’t know, you’re going to keep going and having good days and bad days and it’s okay. Suzette: Right. It’s a learning and then when our loved ones are youngsters, you have the whole developmental issue going on so they’re constantly changing. One of the first, kind of, desperate requests that I made once we had a psychiatrist and medication and treatment plan and psychiatric nurse, God love her, I remember the first call that I made to her was, “I don’t know. I have one child. I was an older mom so I have one child. I don’t have experience. I can’t tell the different what’s developmentally appropriate and what is a mental health condition.” And she said, “Oh, if you could figure that out, you’d make a lot of money,” because I couldn’t. I just couldn’t figure that out. Now, knowing that there’s always that change. There’s always new things happening, suddenly and it’s not suddenly, but now I have a young adult and so we hear about transition, transitioning youth, how do you do that? I have a 19-year-old but I’m not prepared for what to do next because just getting through middle school, getting through high school took everything that I could do. I know they said it’s coming. You have to start when he’s 14. I didn’t get that until he was 17 and so it’s hard. It still gets hard but being able to back up a little bit and figure out, what are the new resources that I need? I have to find maybe a new set of parents. We’re the parents of really young kids. We had an affinity. Tammy: Right. Suzette: I would look at parents of teenagers, I was scared of that. Tammy: Oh sometimes it’s terrifying, right? When your kids are little. You just want to focus on that one thing at a time, absolutely. Suzette: Yes, and you look at parents of teenagers and young adults and it’s like, “Oh my God, how did you do that? I don’t want to go there ever,” and you’re going to get there. Tammy: Right. Absolutely. As you’re thinking about your journey in helping your child, can you think of one particular thing that’s been really challenging, was really difficul...

In this episode, we listen to Shanta, a mother of three, clinician, advocate and proponent of self-care. She discusses raising a daughter who struggles mood disorder and suicidal ideation. Transcription [Music plays] Voice over: Welcome to “Ask the Advocate” where mental health advocates share their journey to advocacy and what it is meant for their lives. “Ask the Advocate” is a Mothers On The Frontline production. Today, we will listen to Shanta, a mother of three, clinician and advocate. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health Conference in Orlando, Florida. During this particular recording, you can hear music and noise in the background from another event at the hotel. Please don’t let these noises distract you from Shanta’s story. Dionne: I want to say thank you very much– Shanta Hayes: Thank you for having me. Dionne: — for agreeing to the interview, especially, on the spot. Would you like to introduce yourself? Shanta: Hi. My name is Shanta Hayes. I’m a MSW, a mother of three, an advocate and proponent of self-care. Dionne: Oh, proponent of self-care. We have to talk about that. So, Shanta, tell us a little bit about your advocacy journey. Your mom-advocate journey. Shanta: My middle daughter is 14 years old and we started noticing some things that were just not quite right or on par with her developmental milestones. And so, we took her to the pediatrician. “Oh, everything is fine and it’s well within norms.” And it was well within norms for a while until it wasn’t. And then it started to manifest itself behaviorally. But what we found out eventually was that she has a diagnosis of ADHD and major depressive disorder. Her diagnosis have led to some challenges in school for her and that’s how we first noticed it. We noticed she was having trouble getting her homework done and she was having trouble sleeping. She was having trouble just understanding the material and we thought, “Whoa! What’s going on?” So, we’ve moved from a diagnosis of ADHD and major depressive disorder to now. We also know she has some processing issues. So, after we visit the psychologist and we’ve done all the testing, it’s like, okay, she has some working memory issues and those things aren’t necessarily solved with medication or behavior plans. So, we’re now going to the neurologist and checking with the endocrinologist to make sure it’s nothing hormonal. But the thing is my advocacy journey is always making sure my child is first in knowing, letting her know that we will put her needs first but that we’ll also take into consideration how she’s feeling. So, therapy– we go to therapy for the depression. But she’s not a fan of talk therapy. So, we’re looking at other therapies now. It’s like, okay, drama therapy, play therapy because those are modalities that she’s really interested in. Because I need her to know that even though I’m the one making– setting the appointments, she’s the one going to the appointments. And if she’s not engaging in one way, we need to find a way that works for her. So, we talk to her and we ask her, “What do you want to do? How can we make this work for you?” So, I’m letting even my 14-year old child know that her health is in her hands. Dionne: This is the self-care advocacy. Shanta: So, I need her to be an advocate for her health. I want her to know that she has a say I think a lot of people don’t take that into consideration. I think we try and force a lot of different therapies or medications on our children and we’re not really listening. We need to be very aware of how we allow them to engage in their own medical mental health. So, that they don’t develop a sense of “I have no choice in this process”. And that’s how we work with her. Dionne: So, you said you have a MSW. Did it precede or did this come along with your journey with your daughter? First of all, tell me a little bit about who you were before you became mom or what you do outside of being mom. Shanta: Let’s see, mom is my first job. That’s my first job. I was one of those young ladies who took the 50’s track and now is schooling MRS . So, for those of you that don’t understand, I’m in school and I got married, right after. I started a family. And I was fine with that. I love being a mom. I love baking. I love taking my kids to the park. I love being their first teacher. We divorced a few years ago and I said, “Well, I get one degree but can’t really do anything with it.” I like history. I don’t want to teach. What can I do? And I’m really good with people and I learned that I was really good with people because as a mom, I was a part of a group called Mocha Moms, which was a support group for stay at home mothers of color. I was a Girl Scout leader. I was on the PTA. So, I’m constantly engaging with people and connecting them to resources. That’s what social workers do. I just happen to like to solve problems as well. So, clinical social work, being a therapist was my interest. So, everything happens in time. I believe that and my going back to school and my daughter’s diagnosis escalating coincided. So, it really came to a head, as I was in my advanced year placement at a psychiatric facility and I worked on an adolescent girls’ unit and my daughter’s behaviors were spiraling and we had to hospitalize her. So, being a clinician, working with adolescent girls and going home to an adolescent girl with her own issues was very challenging. But it also gave me some tools that a lot of other parents might not have had and some insight that you definitely don’t get. Like these are things that should happen when you have to ten-thirteen your child. Dionne: Would you tell us about that? If you want to share, I’m just– Shanta: So, the behaviors had gotten to a point where she was a harm to herself. And a psych nurse deemed it necessary to hospitalize her. And even though I felt I was technically trained and capable of handling this responsibility, I had to consider, it’s not just what I can do. She has two siblings at home. This takes a toll on your whole family. That’s a great deal of emotional stress. So, I took her to the Children’s Hospital, had her evaluated. They deemed it necessary. They transferred her to a facility. So, at the facility, they do stabilization. They do an assessment. They evaluate. The things you don’t necessarily think about are the outside factors, like who is outside your immediate family and do they really need to know? And how will they react? Because that was what we came across. My daughter was hospitalized around her sister’s sweet 16 and we had planned her party and family members are coming but our daughter wasn’t going to be there. So, we had some backlash and that was the time where it came to be, I know you mean very well. However, my job is to look out for the best interest of my child. And she could not be here today because she needed to take care of herself or she needed to be taken care of. Dionne: And again the self-care. That’s a wonderful way to talk about this too. Self-care. Shanta: It is. They have to recognize that you cannot say what she would have done in the situation because it’s very challenging. Like I said I wanted to keep her home but that would not have been in the best interest of other parties because I don’t want them to be stressed. Now, yes, it’s hard to know your sister is in a hospital. But it would be harder thinking, did I put away all the knives or did I put away all the medications or jump ropes because these are the things that we had to consider. Like, okay, because her thing was hanging herself. And that was the scary part because we think, she had a plan. My child had a plan. And she had means and she had access. So, if we don’t think to ask those questions, we might brush it off as it– she didn’t feel well. She’s down. She’s depressed and we still don’t take depression very well in communities of color. So, we did have to remove all items that might be a means to her. But I’m very glad that her time in the hospital, she was like, I really don’t– she’s– I really don’t think they did anything for me. But that was because the modality they used is not one that works for her. Talk therapy does not work for her. So, in the hospital where I worked, I used to play therapy a good deal with my clients and I had clients as young as 6 years old. So, sometimes that might be the best thing you can do is to just sit and play and observe and question. But I’m also a big proponent of bibliotherapy. Using books and stories to engage a client. So, that’s why going back to earlier, we’re looking for other methods that will suit her because I need her to see like, if one thing doesn’t work, that’s fine. We can try something else. There are lots of different things we can do. But we can’t do is we can’t stop. Dionne: That’s important. Shanta: So, yeah, I’m all about being mindful and taking a break. Breathing, being in the moment. But you get– you take that breath and keep going. Dionne: So, in all of these different therapies in this journey with your daughter and then also– I mean having this background which is such a rich and important background, if you could pretend that you’re talking to and you can fill in this blank with “teacher”, “family members”, “church members”, if you go to church, “community members”, doctors” –  and if you could pretend that you’re talking to them, person or a group, what would you want them to know about your experience? You. Your experience parenting a child with a mental health challenge? Shanta: I don’t typically tell people what I do just on meeting them. But I would like for people to approach me with the compassion that they would any other person of a parent going through a trauma, because having your child committed produces trauma because the mom...

In this episode, we listen to an advocate with MomBiz Boss and a mother of children who experience developmental and mental health challenges. She speaks about being a mother of color and the experiences of raising children with both visible and invisible disabilities. Advocacy organizations discussed in the Podcast: National Federation of Families for Children’s Mental Health – A national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. It was conceived in Arlington, Virginia in February, 1989 by a group of 18 people determined to make a difference in the way the system works. https://www.ffcmh.org/ Younger Years and Beyond – A local chapter of National Federation of Families for Children’s Mental Health that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. https://www.facebook.com/theyoungeryearsandbeyond/ Zaria’s Song – We Provide Support &amp; Resources to Parents and Caregivers with Children Experiencing Physical, Cognitive, Behavioral and Mental Health Challenge https://ateducational.wixsite.com/zariassong   Transcription [music background] Women’s Voice: Welcome to “Ask the Advocate” where mental health advocates share their journeys to advocacy and what it has meant for their lives. “Ask the Advocate” is a Mothers on the Frontline production. Today, we will hear from Shanta, a mother of three, a clinician, and an advocate. This interview was recorded at the 2017 National Federation of Families for Children’s Mental Health Conference in Orlando, Florida. During this recording, you can hear noise in the background from another event in the hotel. Please don’t let these noises distract you from Shanta’s story. Dionne: Hello. Thank you very much for agreeing to do this. Would you like to introduce yourself? Teresa: Sure. Thank you very much for having me. I’m Teresa Wright Johnson, and I will say that I’m a mother first and then an advocate. I believe motherhood is very challenging as a business, so I’m kind of known as an advocate and a MOMBiz Boss, and we’ll talk about that later. But I’m a mom of children that were born with developmental challenges as well as physical challenges and children that have mental health challenges, learning disabilities, and more. And I advocate for them. Dionne: And you advocate for them. So Teresa, tell us a little bit about your advocacy journey. Teresa: So my journey began– I’m the mother of four children. I bore four children. Unfortunately– but still, fortunately, have one living child. So I had several children that died very early on when they were born. And then my other two children were also preemies. In coming– you know this is November. This is National Pre-maturity Birth Month– Awareness Month. A lot of people don’t know that. And with premature children, sometimes you have greater risk factors. And some of the risk factors that happened and that were indicated with my first child who was Zaria– and I have do so much for Zaria in her name. She was born with various disabilities, more physical and cognitive. She had cerebral palsy as well as metabolic disorders like mitochondrial syndrome. She also had seizures, low-birth weight, feeding issues, mobility issues, just so many different issues. But guess what? That did not sway me. I wanted to be a mother. And once I found out I was going to be a mother to Zaria, I started to getting training at the hospital– Dionne: Oh, wow, Teresa: — so that I could be the best advocate for her. So over the years with Zaria, I started my own support group for mothers of color called Special Treasures, because I feel that our children are not just special-needs children. They are special treasures. They are treasures that open us up, expand us, push us way beyond our comfort zones, and stuff. And so I did that with Zaria. Zaria, unfortunately, passed away. Dionne: I’m sorry. Teresa: She had a seizure at school and passed away some years ago. However, the journey of her from birth to seven years old has got me to help hundreds of thousands of women and families to different organizations: speaking, training, coaching, learning, and advocating. And I would have never done that without that journey of Zaria. So, Zaria had all those special needs. And she also opened me up to stuff that I never knew of. I knew about special needs a little bit because my Mom when I was little worked in group homes. And I didn’t even know that was a group home I was going to because back in the day, I ended up having a single-Mom that was divorced. You could go about with your Mom. But that compassion that was instilled to me as a child, it really helped me with my child with special needs. Then the special needs group and different organizations– I’ve worked with Mocha Moms, which is a national organization for women of color that put their children and their families first with children with special needs. That was my goal when I was doing things for there. But then, Zaria had a little sister named Jade that was born. And Jade was a few years younger. But when Jade was born, again, she was another premature birth. So, I have to be on bed rest, all these different things to have children. And when Jade was born, she was typical. She was just a low-weight, birth-weight baby. But then, as she started getting older, she wasn’t crawling. She took a long time to walk. I learned about a lot of different things with Zaria that helped me with Jade. And so Jade ended up being very physically functioning. But emotionally, she was the baby that never stopped crying that I took to the hospital, and she didn’t have colic. She was the baby when I would leave with people – her godmother or whatever – they would say, “Um, call me. She’s still crying.” “Ah, okay.” She was the baby banging her crib up against the wall. Not just crying to get out. She was banging it. So, this led me from the journey with Zaria ended up getting all these certifications for special needs– being a Special Needs Trainor for the Department of Development and Disabilities or Babies Can’t Wait, The Early Intervention for Georgia for Zaria. But then, transitioning to Jade was solely different, because she didn’t have developmental disabilities. I wasn’t working with IEPs anymore. That’s when I learned about the 504 Plans and all that stuff. So, me getting educated to help my children, starting off with Zaria, helped me to educate other people, but they helped me even more for Jade. And so now I have Jade, and she doesn’t mind. Jade says– you know what I can always say is that Jade experiences ADHD and some behavioral challenges but highly functioning. Has been placed in AP classes, a very smart girl. But if I wouldn’t never had the experience of Zaria and all these training and support that we get from other mothers and organizations we just don’t know, I would never know how to function or help Jade. And that’s why I’m here today at the National Federation of Families for Children’s Mental Health Yearly Conference is because of Jade. She’s my ‘why’ for this. And so I’ve been able to advocate now for parents that have children with dual-diagnosis whether it’s developmentally or mental health. I definitely don’t want to be a therapist or anything of that nature. But I have so much training that I know that God, and whomever you want to call it, gave it to me to help my children and other people. And I just can’t imagine not sharing that. And I can’t imagine parents not understanding, once they learned how to advocate for their children, they are their child’s number one advocate, because nobody’s going to advocate for your baby – that part of you, like you. Dionne: Yes. So as a Mom advocate, what would you say if you had to talk to– and you can fill in this blank with whoever you were addressing one group– and I know you’ve addressed a lot of groups. What would you want them to know about your experience as a mother of children with mental health challenges? Teresa: Wow, so many things you want them to know. The one is that Mom– that guilt you might have, the, “So why is my child like this?” Or, “How are people going to look at my child,” and all those things. I want them to know that find the treasure in your child, because those hard days when– maybe you have a child that experiences some behaviors or disabilities and is a little bit slower, if you can have that treasure kind of in your head, those days when they don’t seem like a treasure [laughter], when they don’t seem like a treasure, you have something to refer back to because even though it may be hard the way that you have to deal with them, how they deal with you, as society looks at them, they’re your gift. And you have to find the gift that they are for you and the treasure in them. Dionne: You talked about this because– and the days that they seem like that you are just questioning the universe. Can you tell us about one of those days? And then– Teresa: Oh, I definitely can. Dionne: — what and how you worked through? Teresa: I definitely can. One, I worked through it because I have a great support system. I engaged with other mothers that may experience some of the same things, so that I have someone to vent to one that understands me. Learned that very early on with Zaria. When my friends with typical two-year-olds would talk to me about their two-year old but my two-y...

Tiwanna Bailey, the founder and CEO of HYPED4U, a mentor and advocate for mental health and other disabilities speaks about her advocacy journey.

In this episode, we listen to Fidelia from Northern California. Fidelia has three children: two sons with behavioral challenges and a 11 year old daughter with anxiety. She shares her journey of mental illness, motherhood, incarceration, and advocacy. Transcription [music] Women’s voice: Mothers On The Front Line is a non-profit organization founded by mothers of children with mental illness. We are dedicated to storytelling as a method of both children’s mental health advocacy and caregiver healing. Our podcasts consist of interviews of caregivers by caregivers out in the community. This results in less polished production quality, but more intimate conversations rarely available to the public. Caregivers determine how they are introduced and the stories they share. We bring these personal experiences to you with the aim of reducing stigma, increasing understanding, and helping policymakers recognize and solve the real unmet needs of families dealing with America’s current children’s mental health crisis. [music] Tammy: Today, we start a new format for Mothers On The Front Line called Ask the Advocate. In this series, we hear from mental health advocates about their journeys to advocacy, and what it is meant for their lives. I am pleased to be speaking to Fidelia from Northern California today. Fidelia has 3 children, 2 sons with behavioral challenges and an 11-year-old daughter with anxiety. She also experiences mental health challenges herself. [music] Tammy: Hello. Tell us a bit about yourself and the kind of advocacy work that you do. Fidelia: Um, well, I’m a mother of 3 children, 2 grown sons, and 11-year-old daughter. I’m a mental health advocate for Alameda County in Northern California. Tammy: So, how did you become an advocate? What got you involved? Fidelia: I had to advocate for myself and before I could learn to advocate for my children, I’ve been undiagnosed for most of my adult life. I got diagnosed at the age of 35 that I was bipolar, I had PTSD, and I suffered from severe depression. Prior to that, I didn’t believe anything was wrong with me. But so many challenges that I had on the day-to-day basis, making good decisions, healthy decisions, became overwhelmingly just non-existent. I kept ending up with really bad results no matter what I chose to do, and I didn’t understand why, and it was continuous. And so, I started to self-medicate, pretty much just, you know, didn’t know what to do, I just knew that there was nothing wrong with me. My daughter was taken from me twice. Finally, I was just like, you know, there’s got to be something wrong here because it doesn’t matter what I do, nothing’s working out well. I keep ending up in these terrible, you know, situations with, you know, not very good results. And so, there’s got to be something, I need to talk somebody. And so, they came to me and told me, “You know, we’re going to adopt your daughter out, Tammy: Oh, gosh! Fidelia: We’re not going to give you services.” I was in jail as a result of poor choices again. I was like, “You know what? If foster care’s going to be the best thing for my daughter right now, I think that’s the best thing going because, right now, I need help. I can’t be a good parent if I’m falling apart, and I need somebody to help me learn how to help myself.” That’s where advocating came in because I had to advocate to get my mind right, to get my life right. And in order to be a good parent, I needed to be straight. So, I was given an evaluation, a psychiatric evaluation, because I requested that. And then, I requested a therapist. They gave me a therapist. And then, I started seeing a psychiatrist, then they prescribed me medication. And once I started taking medication and talking to my therapist on a regular basis, things completely changed. I caught up with myself. I caught up with my mind. I was able to process feelings without acting out impulsively, compulsively, and it was a game-changer because it was like, “Oh, wow. I’m mad right now, but I’m not putting my fist in a wall.” You know? I’m not slashing tires [chuckles] or being ridiculous. That’s where it began for me. And so, I could recognize behaviors in my children, and then I’m like, “Hey. That’s little mini-me right now, undiagnosed.” And then, I was able to start advocating for my sons. My daughter had a speech delay, so I got her assessed, and had I not known anything and got a little education on mental health, she wouldn’t have been assessed. And so, she had a 40% speech delay. I was able to put her in speech therapy. Now, she talks all the time. Tammy: That’s great though. Fidelia: But, I’m happy for that. You know what I mean? Without that extra help, you know. Who knows how that would’ve turned out. Also, she suffers from anxiety. She is diagnosed with anxiety at the age of 2 because she was taken from me twice. She stayed with her grandmother, and then when I got her back, it was separation anxiety. So, I couldn’t get her to sleep in her own room for about a year, and I had to use the tools that I had, which was parenting magazines. I had no advocate. I had no family partner. I had none of those things that are in place nowadays. I had to do it for myself, so I spent a lot of time just trying to ask questions and getting help. And, you know, how most people don’t appreciate having CPS and an attorney, and a child’s attorney, and the district attorney, and the judge. Well, I used all these people as my support. You know what I mean? I needed somebody to keep the fire lit underneath me, so I would never have to go through this again. And so, I began advocating for myself. I began completing case plans. When they wanted to close my case, I advocated, “I need you to keep it open another year. I need to make sure that I am solid in my sobriety, in my mental health, and everything else, so I don’t ever have to see any of you people ever again.” That’s where it began for me, I started advocating, and then I just stayed advocating, and I still advocate and now, I help other parents whose children come into the clinic, where they’re seeing for behavioral –  mental health challenges. I help the families, the mothers, the grandmothers, the fathers, the caregivers, the foster parents, and it’s like, “So, what challenges are you facing?” Because not only is the child challenged right now, you’re challenged. You’re the one sitting up at night. You’re the one having to call the police. You’re the one not sleeping because your child’s not sleeping. You know, you need self-care or, you need help with SSI, how can I support you? That’s what I do today, you know. I have had clients say, you know, how parents, who have mental health challenges as well, then we know they’re like, “I’m supposed to be taking anti-depressants.” And I’m like, “Well, why aren’t you taking them?” And they’re like, “I don’t need that. Do you take medication?” And I dig in my pocket, and pull out my pills and say,   Tammy:   Fidelia: “Yes. Every day. Chill pills at 5 o’clock. I need to act right ’till I can get through the day so I can model for my children how to act right. And then, so the next thing I know I have a client come back in with later saying, “I’ve been taking my pills for about a week and I feel good!” I’m like, “That’s what’s up!” Tammy: [laughs]   Fidelia: “I need you to feel good so you can get through this ’cause this whole process is challenging.” And so, that’s what I do every day and I love it but it’s from lived experience, my own lived experience, not just my child’s lived experience, but mine.   Tammy: That must make you just a great advocate. Can you talk a bit about how in your work, experiences that you’ve had? With you having lived experience, it was a game-changer at being able to help someone, so you give this great example. What about with working with parents helping their youth– Is that, can you give other examples? Because I think that’s so powerful.   Fidelia: The what? My lived experiences?   Tammy: To be able to share that with others.   Fidelia: Well, I share it with them all in time. I have no shame in what I’ve been through. I’ve been through exactly what I was meant to go through, so I could help other people get through it. So, whether it be, you know, going to IEPs, I’m there to support them. I tell them, “Well, what are your concerns? I need you to write that down, so you can voice that because your voice needs to be heard at these IEP meetings. They’re not experts on your child, you are. You need to tell them what it is that you believe your child needs to get through a productive school day, not being called to come pick up your child.” So, helping them was like changing in front of my 504-planet school, and making the school district accountable for the education and special resource teachers that are supposed to be in play when their child has an episode. You know, so they can say call up and say, “Hey. You know what? Where’s the resource teacher? You know, you can’t keep sending my child home. He’s not getting the education.” And I helped them through that process. I helped them through the process of personal relationships. I’m a survivor of domestic violence. “Are you in an abusive relationship? Well, what is it that you need to do so you can feel safe, so your child isn’t walking around on edge, who’s suffering from PTSD from witnessing this, and you have PTSD.” We talk about all kinds of personal things because I’ve been through all those personal things; substance abuse, incarceration, I’ve been there, you know. So, we can run the gauntlet of what you want to talk about, but I get them to open up because I’ve already done it. You know, not once, not twice, but probably six or seven times, and still, didn’t get the message that I was suppose...

Today we speak to Bree Jackson, a mother and autism advocate from middle Georgia who has a parent support chapter called Puzzle Pieces of Love. (music) Narrator: Welcome to the Just Ask Mom Podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mother’s on The Frontline Production. Today we will hear from Bree Jackson, a mother from middle Georgia. This interview took place at The National Conference of the Federation of Families for Children’s Mental Health in Orlando, Florida. There is some background noise from other events occurring at the hotel, please do not let these noises distract you from Bree’s story. (music) Dionne: Hello. Bree: Hi. Dionne: Why don’t you tell us a little bit about yourself, tell us how you like to be introduced? Bree: Well, my name is Bree Jackson. I am an advocate for Autism. I have a parent support chapter called Puzzle Pieces of Love out of Macon, Georgia. I support all the parents in middle Georgia with kids on the spectrum. Mainly because when my son was diagnosed, everything was in Atlanta, and I had no services in middle Georgia except for speech therapy. So, that’s where I am. Dionne: So, you’re in middle Georgia? Bree: Yes. Dionne: Do you like middle Georgia? Bree: Some days, sometimes I don’t, sometimes I do. Dionne: So, Bree tell us a little bit about your, not, tell us as much as you want about yourself before or outside motherhood? So who were you? What did you like to do? What were your passions or your interests, outside the capacity for caring for your child? Bree: Right, before my son was born I was a very active writer. I liked to write fiction, science fiction, fantasy. I like adventure, and that’s whether it’s creating adventure, or going on my own. So, I loved to travel, and that was something I was able to freely do, because I didn’t have a child-friendly budget before my son was born. But, I liked to travel and I liked to write, so. Dionne: You find any time to do that still? Bree: My husband is very gracious and I get an hour of Me time every day, so I can write, I can go for a walk, I can take care of myself because my husband is also on the spectrum, and he knows I need that break for myself sometimes, and so. Dionne: That is important. So, pretend you were talking to someone and tell us what you want them to know, you can fill in this blank with, anyone that you want you, to understand your experience and that can be doctor, teacher, lawyer, insurance broker agent, anyone or institution that you like, what would you like to tell them about your experience, as a mother of a child with Autism? Bree: I think I have two different answers to that question, I would talk to mothers first because I remember getting my son’s diagnosis and my first thought was I messed something up, and it was my fault. And every mother needs to know that they’re not a failure. As long as they go through life fighting for their child, even if you win or lose the battle, they didn’t fail their child. So, that’s one thing I think should be said, the other part would be, elected officials and insurance companies and they need to know that if they’re going to implement health care, and put their feet into health care, and spread it out, and make policy on it, they need to know that there are people out there, who suffer invisible diseases, and invisible illnesses that you can’t see on the outside. And they need to be treated with the same attention and respect that you would treat cancer or Crohn’s disease or ALS and it’s really important to know that even if it’s not something that they can put a bandaid on, it still deserves to be treated. Dionne: Right. Ok, So in your journey with your child, what has been difficult in the past, in trying to get help for your child? Tell me about, tell me a story, tell me something about? Bree: Mainly, insurance coverage, would be my biggest hurdle, with taking care of my son. When I was, when he was first diagnosed and we were at the speech therapy clinic and he’s getting his speech his and OT five times a week and about five weeks into it, they stopped me, and there like, “Ok, well you owe this much money today” I was floor boarded because at that point I had been paying these twenty dollar copays and we were fine and they said, “Well, the insurance no longer covers” he was only covered for twenty-six visits and you’ve run out of those and this was like, in July. So, I still had the rest of the year to get through, and I had no way to pay them for two, three hundred dollar visits, every day and I called my insurance company and it was, he has an official diagnosis, we were referred for therapy because he has Pervasive Developmental Disorder and he can’t speak. He needs to learn how to speak and to them it wasn’t important, they told me that autism did not qualify as a primary mental health diagnosis and that he had gotten what he was going to get and there was no way for me change it and I asked about getting new policy, a new policy with my healthcare when open enrollment happened and they said that there was no coverage that would allow me more than what I was already getting. So, that was, that’s been my journey and thankfully, my son has progressed and I fought that budget battle and the financial battle and that’s been a five and a half year journey and now he’s down to one therapy session every other week. So my insurance does cover it because I’m only using twenty-six visits. If he needs extra, his school is absolutely amazing and I’m very blessed that he got to where he is because it was through a lottery that he was chosen for this school. So, they provide a speech therapist, if he starts to struggle in school and they provide an occupational therapist, who actually got him to graduate from that occupational therapy. He went about two weeks ago, he graduated from occupational therapy because he could write his name without it going outside of the lines, on the notebook. So, that meant so much to me and he’s eight years old now, and he’s a doing great. Dionne: Oh, that’s awesome, that’s awesome, did you keep it? Bree: I did. It’s framed up, it’s on the wall, actually like a picture is. Dionne: That’s great, I would have framed it too. So, there’s a lot in there. What would you say worked well? I mean if you had to tell us, in all of that, because there’s a lot of good stuff. Bree: Yeah, what worked well was, I got into that school and it’s a charter school in Macon, Georgia and it’s, because Bibb County has a very bad school system and I know how blessed I am because if he hadn’t of gotten into that school, he would’ve been in that pool, and fighting for an IEP and a 504 would have been the battle of my life. But this school he got into it’s in kindergarten he had a RTI because he was too young for IEP. So, we got the RTI and when first grade happened, they were like, well we see he is on RTI, do you want a 504? I said, sure we’ll put him on a 504 and we’ll get all this written down and now he is in second grade and as soon as I walked in, the teacher was like, as soon as I saw his name on the roster I saw he matched up with a 504 and I already looked through it and I just want to know if there is anything you’d like to change? Dionne: Wow. Bree: And he’s been, this year has been the easiest school year ever, because he’s got it, and they’re prepared, and they prepared themselves over the summer, and I am very blessed to have a school system that focuses on that. Dionne: Wow, wow, that makes a huge difference. Bree: Yes, yes it does. Dionn: So right now, would you say are you swimming, drowning, or treading water? Bree: Now, I’m swimming. I know what it’s like to drown, and I know what it’s like to tread water, and just barely be able to breath, every few days. But now, I’m surrounded by natural supports and I have this organization now, where I’m raising money to pay the therapy debts, to the people in our community. Because we have, I have bikers who are paying to ride their motorcycles, so that they can give that money to people who need therapy and I have a Tupperware lady who set up a fundraiser for my fund, so that I get forty percent of all of her profits for the next month and I have Avon ladies who donate baskets, so that people will pay for raffles and I have all these people coming to me saying, “We’re going to help”. Dionne: Oh, that’s wonderful. Bree: And so, all these Autism families in the community, that know who I am now, they’re like, I need help, can you get me help and its yes I can because I have like, fifteen people who are ready to give me money, to help me pay your bill. So, I am swimming now, and I am so grateful for it. Hopefully, I can help other families start to swim too.  Dionne: That’s wonderful. That is wonderful. So, you talk a lot about, I mean, as moms we have to be fierce advocates, for our children. What’s your self-care routine? Or your survival technique? Bree: My survival technique. I had to have that because my husband was not actually diagnosed until about six months after my son, because our generation, kind of swept mental illness under the rug and his parents were the type of parents that were, it’s a discipline issue, we’ll take care of it, it’s a discipline issue. It never went away. So, now I deal with that on a daily basis of getting him to where he should have been fifteen years ago and I have to, I keep my son on track and I keep my husband on track and he supports me taking care of myself. So, I get to take my long walks, or I get to read a book, or I get to ride, or paint, or I get to take myself out to dinner, just by myself, so I don’t have to explain to the waiter that neither one of them can eat anyth...

In this episode we listen to Kaytra MacDonald, a mother from Delaware and Family Peer Supporter from Champions of Children with Mental Health. (music) Narrator: Mothers on the Frontline is a non-profit organization founded by mothers of children with mental illness. We are dedicated to storytelling as a method of both children’s mental health advocacy and caregiver healing. Our podcasts consist of interviews of caregivers by caregivers out in the community. This results in less polished production quality but more intimate conversations rarely available to the public. Caregivers determine how they are introduced and the stories they share. We bring these personal experiences to you with the aim of reducing stigma, increasing understanding and helping policymakers recognize and solve the real unmet needs of families dealing with America’s current children’s mental health crises.  (music) Welcome to the “Just Ask Mom” podcast where mothers share their experiences of raising children with mental illness. “Just Ask Mom” is a Mothers on the Frontline production. Today we will hear from Kaytra McDonald from Delaware. Dionne: I am speaking to Kaytra. Would you like to introduce yourself? Kaytra McDonald: I am Kaytra McDonald from Delaware. I am part of Champions for Children with Mental Health. I am a family peer supporter, I am a family advocator.  Dionne: So, Kaytra, could you tell us a little bit about yourself before and outside of mothering? What are your passions, what are your interests? What do you like to do? Kaytra: I am an extreme couponer. I am also on different boards throughout the county, of Sussex County. I also am the food coordinator of Code Purple which is a homeless shelter. I’m a friend, I’m a community advocator, I’m a mother. Dionne: You like the coupon? Kaytra: Yes. Dionne: You wanna talk about more about the coupon? Kaytra: Couponing. I basically coupon to help others. For Mother’s Day we coupon the most [?] women. It makes them feel good for mother’s day we make them basket for personal items and then I get the community kids to make them homemade cards. Father’s Day we get together, we make baskets and give the fathers a lunch pail with a card and a basket. Dionne: Wow, that’s nice. I like couponing too. So, pretend you are talking to whoever, just think about a person and place or maybe an institution. What do you want them to know about your experience parenting a child with mental health challenges? Kaytra: You have to be over-minded, you have to be loving, a caring person because you don’t know what their mind is going through. You don’t know what their emotions are. You gotta come out of your box, you gotta enter their world to see how they are thinking and working. Dionne: If you could tell us a little bit about what has been difficult in the past when trying to help your child? Kaytra: The most difficult I think was school. They wanted to put him in like a store shed school and say working with my son. And I ask for meetings and I firmly got my son a one-on-one so he could stay in a regular school setting. And bureaucrats in the city put him into another school where he didn’t need to be. So I fought for his rights to stay in school. Dionne: And how did that make you feel? Kaytra: It felt good because it was a fair choice for my son. Dionne: You were talking about the school and getting him in school. Are there any other things that work well in particular for you and your son? Kaytra: Different programs that he was in definitely help. I had a–what is it, op–therapist? Dionne: Occupational therapist. Kaytra: And then I also had a community service therapist come out where they work with him after school, weekends, three times a week and he worked with other peers. That was a big help, family was definitely a big help, friends, the community working together with me. Dionne: It sounds like you have a very good supportive environment for you and him. Kaytra: Yes. Dionne: So, in that, I mean in the environment, If you had to describe where you’re at right now with him and even personally, would you describe yourself as swimming, drowning or treading water? Kaytra: I’m swimming. Dionne: You’re swimming? Kaytra: I’m swimming. I can’t say I’m drowning because I am not emotionally wrecked like I was every day. So I’m swimming and he’s swimming too. Dionne: How was that? How’d you manage? Kaytra: A lot of praying. Crying on my fiance’s shoulder, cooking, couponing but it was hard work. Dionne: It’s a lot of work. I bet it was.  Kaytra: Yes. Dionne: So one of the things that as mothers, we’re often advocates we’re very good advocates for, and this one, and just ’cause you have a wonderful story, you’re advocating, you’re at the school. How do you advocate for yourself? Kaytra: [laughter] That is a hard question. It’s hard. Dionne: It’s hard. [laughter]. It is hard. Kaytra: It’s hard because we put ourselves on the backburner because it’s our child. We have to get them straight before we get ourselves straight sometimes. Dionne: Yeah. Well then, what’s your self-care routine? Aside from couponing, which is still kind of caring for others. Kaytra: Getting my nails done, getting my toes done, quiet walks, vacationing… Dionne: Vacations? Kaytra: Yes, vacations. When fiance takes me on–there’s a hotel getaway to Ocean City, walking on the beach or listening to the waves at night, yes. Dionne: So would you count that as your survival technique? Kaytra: Yes. Dionne: Walking on the beach? Kaytra: Hhmmhh… Dionne: I don’t walk on the beach too much. So in all of this, because it’s a long journey with our children inside, I know it’s a long journey with you and your son. What will you count as one of or two of your most laughable moments? Kaytra: Oh my goodness! That’s a lot. [laughter] Laughable or happiest moments–I have to think of a good one–my son would come home with good grades or a report card and our treat to him was buying him lobster. [laughter] And he would just be tickled when he comes home to see these lobsters moving around in the kitchen sink and he picks them up because they had the rubber band on the claw. He was happy, surprising him at school, to eat lunch or we sit around watching a movie together. Dionne: So those are your most enjoyable moments with him? Kaytra: Yes. Dionne: So at the end of this, it started it with pretend you’re talking to someone–what would you like for us to know, overall, as advocates, as members of the community about mothers? Kaytra: About mothers? It’s hard, it’s tough, you gonna cry sometimes. But you have to get back up and staying up on your own two feet and keep pushing and keep a smile on your face because you’re your own child’s advocator. Dionne: Thank you so much for doing this. Kaytra: Thank you. Dionne: Thank you.  (music) Narrator: You have been listening to Ask the Advocate. copyrighted in 2018 by Mothers on the Frontline. Today’s podcast host was Dionne Bensonsmith. The music is Old English written, performed and recorded by Flame Emoji. For more podcasts and this and other series relating to children’s mental health, go to mothersonthefrontline.com or subscribe on iTunes, Android, Google play or Stitcher. (music)  

In this episode, we listen to a mother of three children with mental health diagnoses who works as a Family Partner with North Carolina Families United. She discusses the barriers families face when trying to get their children services and her own experience of moving her family to another county in order to get mental health services for her child. Transcription [music] Female Speaker: Mothers On The Frontline is a non-profit organization, founded by mothers of children with mental illness. We are dedicated to storytelling as a method of both children’s mental health advocacy and caregiver healing. Our podcasts consist of interviews of caregivers by caregivers out in the community. This results in less polished production quality but more intimate conversations rarely available to the public. Caregivers determine how they are introduced, and the stories they share. We bring these personal experiences to you with the aim of reducing stigma, increasing understanding, and helping policymakers recognize and solve the real unmet needs of families dealing with America’s current children’s mental health crisis. [music] Welcome to the ‘Just Ask Mom’ Podcast, where mothers share their experiences of raising children with mental illness. ‘Just Ask Mom’ is a ‘Mothers On The Frontline’ production. Today, we will speak with a mother of three children with mental health diagnoses. She works as a family partner in North Carolina, with North Carolina Families United. Tammy Nyden:  Well, hello. I’m just going to ask you to tell us a little bit about yourself, either before or outside of mothering, what are your passions? What do you love to do? Mother:  Family time. I love family time. I like spending time with my immediate family, like my at home family and my extended family. So family values mean a lot. My husband race, so we do go to the race track a lot because he race motorcycles. And sports. Because my kids do basketball, and soccer, and volleyball. They compete each year, and I used to run, so sports activities is things that I like to do.  Tammy:  Well, that sounds like fun. Like a lot of fun in the house. Mother:  Yes. Staying busy.  Tammy:  Staying really busy. That’s really cool. Mother:  Stay very busy. Tammy:  The racing would scare me a little bit. Mother:  It does. I don’t like for him to race if I’m not there, but I’m used to the race track. My uncle used to own a race track. My cousins race cars, so that’s something that I grew up with. Tammy:  So you’re used to it. Mother:  So it’s kind of you know, the fact that we met, and that’s his thing, and I grew up with it, so it’s something that we had in common. But, yeah, it bothers me if I’m not there. Tammy:  It sounds exciting too, though. Mother:  Yeah. It is. It’s an adrenaline high, basically, yeah.  Tammy:  Absolutely. Yeah. Cool. So, I want you to pretend that you’re talking to elected officials. What do you want them to know about your experience? What do you want them to understand? Mother:  It would be the difficult things that families go through to get services. That when they choose to cut funding in certain areas, how it affect families, especially families in rural areas. How hard that families and children fight for services. How they can be overlooked and/or mistreated because the service that they need is not available to them. To probably take themselves out of the equation when they’re making these decisions because they may or may not have had to experience the things that we have had to experience. So how could you make a judgment or make a decision based off of data? Because data doesn’t tell it all. Stories can tell you some things but data can only give you numbers, and numbers is not a good way of determining whether or not it’s beneficial for one particular area. Tammy:  Can you think about certain things that you’ve seen that have been cut or not cut or just programming that you could have used that weren’t available? Mother:  I mean, no, ’cause so my son is now seventeen, and we started this journey back when he was five weeks, basically. And when his diagnosis came into play and I actually moved from county to county to get services. And so I’m from a smaller county in North Carolina but then I moved to an even smaller county in North Carolina to get better services. Tammy:  Really?  Mother:  But I feel like I should not have had to uproot my family to go somewhere else to get services. And I stayed there for a while, and I mean because of the problems he was having, I owned my business and couldn’t run my own business. I had to be a stay at home mom because there were not people that could take care of him. Or the doctors didn’t feel comfortable with him going to a daycare, not even to my own if I couldn’t be in the room the whole time. Tammy:  That’s a lot of pressure on you too. Mother:  Yes. It is. So I became a stay-at-home mom when I really wasn’t ready to be a stay-at-home mom. And then that fact that you have people, I mean like the agencies that I was working with in the smaller country, they told me, “When you go back home, you’re not going to get these services.” Now, not to say that the services are not available, but you’re not going to get these services. And it is because of the fact that these agencies/organizations or governmental agencies have to right to hold onto funds, and if those funds are not used within a certain time frame at the end of the book fiscal year, they can use it however they see fit. So if it’s something, they won’t really get money for something else, then they can say it’s not available and/or needed for our children, and hold onto it, but then they can spend it somewhere else. Tammy: So they’re motivated? There’s– Mother:  You’re right. Right. So now in North Carolina, they are trying to pass a Bill where it’s going to prevent them from doing that, but that’s a process, but that’s now. So what’s going to say that when it’s time for this Bill to go through that the elected officials are still in play? Tammy:  Right. Mother:  If they’re gone, then we got to start all over again. So I mean, even though it’s uncomfortable, I mean, my daughter was in school so I had to uproot her to go somewhere else just so her little brother can get services. And then you know, you have families that they may make a dollar too much and they can’t get Medicaid. I feel like that these private sector insurance companies need to understand the importance of services. And I feel like if the government can make the insurance companies do so much as far as you know, the Affordable Care Act and all of that, then you need to have them to implement or demand that they do mental health services or IDD Services. Something, because these kids should not be without as well. The only way you can get services for your child like that if you deem your child a risk to society and then they would give them residential Medicaid for the time frame that they need to be put away to get the services to make them successful in the community. And they should be able to be successful in the community, in the community.   Tammy: Well here is the question. And we’re in different states, so I know it varies state to state, but even if they have residential and they come home if there are no community services… Mother:  Then they go home. Tammy:  …they’re starting all over again. Mother:  They’re starting all over again. Tammy: They’re starting over again Mother: Uh-hmm. And I think that requires a lot of advocacy work. Like my job, I’m a family partner so I advocate for the families in North Carolina. So who I work for is the state chapter for North Carolina. The family-ran state chapter. So we take care of all of North Carolina. So I advocate for those services. I attend these school meetings and these DSS meetings, and everything to make sure that the families voice is heard and that the families get what they need. I sit on Care Review because I’m going to be that voice that’s going to keep that child out of residential. They try to implement those services in the community and we stress the importance of giving that family a wrap-around service. Give them a family partner, get that youth a youth partner. Somebody that has been there, done that. That could help guide them through the community to help them be successful because, in the end, the government’s going to say, “Money”. It’s just getting them there. Tammy:  Exactly. Exactly. Mother:  I mean, every time something goes wrong it falls back on mental health. Tammy:  Yes it does. Mother: But you take away our money.  Tammy: What’s so hard too is kids, they’re like anyone else with mental health conditions, physical health conditions and ebbs and flows, and when the kid’s doing better, say, “Oh, you don’t need them anymore” Mother:  And you know, I see that it’s not that you don’t need it. Maybe you need to be put on maintenance. Tammy:  Yes.  Mother:  Put on maintenance. So that means that if my child is doing good, then he or she should not have to go see somebody every week. Put them on maintenance, but don’t say that if he has a flare up thirty days later, that we have to go back through that assessment program all over again. Tammy:  And start from the beginning. Mother:  Yes. So to me, that’s not fair, because nobody wants to have to continue to have to tell their story to somebody strange, over and over again. And it’s pertinent if you get them young, put the money where your mouth is, that you don’t have to worry about these older people. So I really feel like … Sometimes when we’re voting or when we choose not to vote, there’s a consequen...

In this episode, Nate tells us about his journey adopting his young son from the foster system and how the trauma of his son’s early life has left a complicated matrix of diagnoses.   Transcription Voice: Welcome to the Just Ask Mom podcast where parents share their experiences of mothering children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with Nate, an adoptive single Father of 8-year old Ricky. Nate is a military and railroad veteran and lives in Iowa. Tammy: Tell us a bit about yourself before or after you had your son, just tell us a little bit about you? Nate: Back in 2014 I chose to– well I guess I should go back even further—when I was 30, I told myself that if I wasn’t married with 2.5 kids by the time I was 40, it was time to do something. So I did something and when I was 40 in 2014, I got license to adopt. The end of October in 2014. And that’s when the road started. A road that I had never been down and very few people in my family ever have either. Including my cousin in Arkansas who is a Special Ed teacher. Prior to that I’ve been a locomotive engineer for 20 years. Worked all over the country. Before that I was in the military. I’m a military veteran. I was a medic in the military. I had that experience but none of that prepared me for what was to come when I entered the adoption world and the various spectrums of which you would encounter. Tammy: Okay. So pretend you are talking to the public, or you’re just telling people who haven’t had these experiences that you’ve had, what do you want them to know? Nate: Well, foster kids, they’re in a whole different class and you often hear, these kids are damaged, or these kids have baggage or these kids are bad kids even. The stigma that follows them and none of it is their fault. The public, in general, seems to block out the fact that these kids come from very, very bad situations, and because of that their minds have been reprogrammed in all essence to survive. And that’s where a lot of these behaviors come from, and that’s what, us, as parents struggle to reprogram. If you can imagine a Rand McNally map of Missouri when a child is born. You have all of those highways going everywhere, well that’s a child’s brain when they’re born. Once you place trauma, physical abuse, sexual abuse and every other avenue on top of that, you might as well take all of those highways on that Missouri map and throw them away and you could just draw four lines that do not intersect each other, that end in nowhere and those four lines are survival, food, shelter, safety and getting their way – what they think is best for them. Those four little highways, that is it in the entire state that end nowhere, that don’t talk to each other, and it’s up to us as the public, not just the adoptive parents or foster parents, it’s up to us as the public to build all those little highways back together again. Tammy: That’s right. Nate: To attempt to rebuild that entire map. Now, it’s a little bit easier when you get them when they’re pretty young, not much, but a little. But it falls back, it just takes a lot, a lot, a lot, of resources to do so. Tammy: Right. Tell us about your situation. How did you come about meeting your son and having your son and what was it like in the beginning? Nate: It was actually very interesting. The end of 2014 and through most of 2015 I had set my home study out on various kids all over the country, literally, that I was interested in but I never really, never got considered for them.  Even once they had told me that they even had no other home studies being considered. But just as I was kind of losing hope thinking I had wasted my time getting licensed, I got a phone call. It was almost to the day – the anniversary of when my brother died in 1999. I think it was November 27th of 2015 my brother had taken his life, the end of ’99. Tammy: I’m so sorry. Nate: I want to say the 26th and his name was Rick, well I got a call about this six-year old that was named Ricky. Tammy: Oh wow. Nate: My initial intent was to adopt older like 11-12 what I tend to call the forgotten bunch -the older ones. To give them a chance number one. Number two, my work schedule is not the greatest and I kind of needed a child that was a little more self-sufficient. But they called me about Ricky, of course, the coincidence, that I could not ignore. He was a lot younger than what I had planned on but then the first things that start popping in my head is well he sure is young enough to still be able to create that bond. And whatever he has wrong should be able to turn that around or get it stabilized. So I went ahead and started visits December of 2015 and the visits I had with him, he seemed a little hyper, a lot of energy, but to me nothing out of the ordinary. Even when the visits progressed to him coming to my house to stay overnight, he wasn’t too bad. Manageable, he was manageable. Well, the end of January, they moved him in. Something had happened in the foster home and they needed to move him quickly so they went ahead and expedited the transition into my home. So I moved him in I think it was January 27th or 28th. And it was really neat because you could tell he was just happy as a lark to move in. He had never been in such a fancy house. He never had all these toys before. He was just the happiest kiddo West of the Mississippi. Then day two came. Tammy: That quick? Nate: That quick. Tammy: Wow. Nate: As soon as I went down to wake him up the morning of day two, I’m here to tell you, I just barely touched him on the shoulder and he just kind of cracked one eye open, he just slid down the bunk bed ladder down to the floor and he just took off running, I mean he’s running into walls and everything else. He’s still half asleep and he just zooms, right on up the stairs. Tammy: Wow. Nate: It was the craziest thing you’ve ever seen, you know what I mean? And he just– he was full board the rest of the day and I’m like, wow. I mean I’ve been around ADHD kids before but nothing to this degree. But at that time that’s all I was dealing with, I was dealing with hyper. An of course at the time he was on stimulants, he’d take his stimulant in the morning and he would kind of level out but then the rise to fame would start about one or two in the afternoon. Everyday. So he started school almost immediately and he did good at school for the first month. Then I started getting calls that they’re having problems. He would run out of the classroom and go running around the halls, or he would start throwing animals around the classroom or tearing up books or tearing up other kids’ papers. Not following directions, so on and so forth. There wasn’t any confinement at that time. But his outbursts — and at that time he was not in Special Ed either. So we dealt with it and over the– and right about then I started getting him into the local psychiatrist to figure things out. What’s going on with his meds or what are we missing or what do we need to do next. So they changed his meds to something different and well that was a mistake. Tammy: Really? Nate: They didn’t wean him off, they just switched from one stimulant to another. At that time, I was completely ignorant to that. Tammy: Right, so you’re just trusting really what they tell you– Nate: Yes. Tammy: –because they’re the experts, right? Nate: Yes. Tammy: I’ve been there. Nate: Oh. Tammy: Yeah. Nate: And so he– after that for the next couple of months, I mean it was just problem after problem after problem in school. They were making adjustments wherever they could and I have to hand it to that school. They tried, tried and tried again. They genuinely adored him and understood what he has to be going through. At the same time, there were no secrets between me and the school on day one, they got everything that I had. Child studies background, everything. So they knew absolutely everything and they couldn’t come back on me on top of it, you know what I mean? Tammy: Right, you were in it together, really. Nate: Yes, yes, we were working together. And I was raised that way with school districts because my mom is a retired teacher. So I have a compassion for the teaching industry. I understand how it works. I had a lot of problems over the next couple of months and he didn’t really have many confinements. There was a couple – two or three instances where they had to use confinement, but me or the nanny was home and one of us would go get him right away. He wouldn’t stay there. But that it was only two or three times I want to say total in that first year. Now. In May, I had got him up here to U of I and uh, they are a great facility, they do try very hard to work with the different families. They changed up his meds again and kind of went back to the original med schedule and then just hit some tweaks and added one I think– one med. And things seemed to level off the rest of May. Well enough to the point that I thought that they had gotten things figured out. Or got him on the right track. He was on a good enough track that when his worker, his social worker came to the house for her monthly check up, she asked if I would be interested in his older brother and she told me what he had and he had all the same things that my guy had. Tammy: How much older is he? Nate: One year. Tammy: So they’re close. Nate: Yes. except for the older one also had RAD. Tammy: Radical Attachment Disorder? Nate: Reactive. Tammy: Oh reactive, I’m sorry Reactive Attachment Disorder. Okay. Nate: Yes. I had done some reading about Reactive Attachment Disorder and my cousin who’s a Special Ed teacher did a paper in college on R...

In this episode, a mother shares her experience of the recent diagnosis of her son with Asperger’s Syndrome. She discusses the journey to the diagnosis and how well-meaning, but often misguided advice from family and friends can make this already difficult journey all the more painful. She discusses her son’s experiences being bullied in school and the pain of watching your child grow up without friends. Transcription Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother whose son was recently diagnosed with Aspergers. Tammy: Tell us something about yourself. Mother: That makes it really tough. Tammy: I know. Mother: Right? You think it’s all easy and then you are like…. I’m a middle age woman that is a mother of a single child. We’re on the path for a diagnosis of Asperger’s. This was a recent diagnosis, or process of a diagnosis, for us. It was a bit of a shocker. Prior to having my son, I nannied for 17 years, so I was around kids, help raise kids, manage kids. My son came along. Everything seemed fine, until now, when we really started to notice some differences and the fact that he is very routine-oriented. And just some of the changes that we’ve seen compared to the other kids. But this is tough. Tammy: It’s tough. Mother: Man. Tammy: It is. Mother: My favorite thing to do – technology. It is always something with a cell phone or the computer – a gadget of some sort. So, that is what I spend a lot of time doing, that and taking pictures. Tammy: So that’s what you enjoy doing. Mother: My son lives in front of the camera. Poor kid. I love him to death but.. he’s like, “Hey, you got that on my face again?”. Tammy: It’s nice to share a passion, right? Mother: It is. Tammy: So that part is really good. So, you are going through this with your son. I want to know what you would like other family members to know. Who you know, because we have a lot of people out there who are going through this and they probably feel the same way. What, you are the one in the middle of it, what do you want family members who they mean very well but don’t- aren’t in the middle of it. What do you want them to know? What would you want to say to them? Mother: So, let’s go back probably about seven months ago, when we hit a rough spot with our son, who had a day where he was so overwhelmed that he couldn’t function at all. And at that point I knew we needed to do something. We needed to figure out what was causing all the behavior and triggering this because he literally was just a body. His eyes were glassed over. He just would sit and cry. He couldn’t get dressed. The thought of going to school made him physically sick. This is a kid who up until this point loved school. Tammy: Really? Mother: That’s when I intervened and said, “Okay, you know, we got to do something”. After talking with family members– they were giving great suggestions, you know, trying to help —but we knew we weren’t on the right path. So we intervened with a therapist who has worked really hard with our son. With a suggestion of a friend I looked at what we felt potentially was Asperger’s and looking at our son knew that he had a lot of the same characteristics. A lot of the same things – looking back of course as a parent you feel really guilty. Because you didn’t see these things sooner but getting that groundwork work with that therapist helped me immensely sit down with my parents, with my in-laws, with my husband, with my siblings, and talk to them about what we’ve seen, what we see going forward, how we are going to try to approach things for him. Because it’s not easy. It’s very stressful. His stress is also my stress. And when he is worked up, then I can’t relax and it just throws the whole family dynamic off. Of course we got the “it’s because he is an only child? It’s because you are too hard on him. maybe if you did more with him. If you took him out and have him do more things he would be more social. That’s part of it. You are not exposing him to enough, you know? Are you sure that he’s on schedule that tight? Have you, you know, really sat back and watched?” Most definitely. The kid gets up in the morning. He has his specific clothes in mind before he gets out of bed. We lay there and talk for five minutes. He gets up. He gets dressed in a specific order. I have tried to change that up. It turns the world upside down. I’m just thinking, “Ok, so much as putting your socks on before your pants can’t be done”. But if in your mind that’s what you need, I’m fine with that. I’m okay. But until I tested that a couple of times, did I find out, right? I just thought, “Oh, it’s just him being particular about one thing”. But we have a certain routine with getting dressed. A certain way to put deodorant on. A certain way to put cologne on. We have to hit the bathroom at a certain time. We don’t do our hair, we make our hair. Tammy: Really? Mother: Yes, he makes his hair every morning. So, whatever style he has in his head, he makes it. Tammy: I see. Mother: I don’t understand where that comes from, but that’s ok. It’s not worth an argument over come at the end of the day. He eats the same food for breakfast every day until he is tired of it. He eats the same for lunch every day until he is tired of it. So, it’s very, very specific. We have to live this with him every day. Tammy: Does he get very anxious if anything goes off his schedule? Mother: Yes. It causes major issues. And he’ll start to fidget. Mostly he’ll either pick at his fingers or hands to try to calm himself. Compression shirts have made a huge difference for him. Tammy: Wonderful. Mother: Convincing him to wear them on the other hand was not easy. It took a lot of work but we’re there. It’s a safety blanket now so we don’t leave home without them. Tammy: Mother: I’ve invested in. I don’t know how many shirts we have in every color because for him his shirt has to match his pants. And his shirt and his socks have to match or we have an awful day. You cannot use black or blue as universal color. It is specific. It has too match. So it’s very, very tough. I never thought about this. We can do a whole series on shopping with an autistic child – it has to be a certain fabric, a certain color… Mother: They have to fit a certain way. Tammy: If you do it then that it’s going to help the child be well throughout the day. Mother: Yes. It makes a huge difference. And for someone who doesn’t see this, for someone that’s not behind those closed doors on a daily basis, they can throw all kinds of great ideas out there to help you, but until they are in your shoes, they are not going to get the full picture. I would like to have more family members there to see how our days go. To give them more insight because until your hands on, you don’t get it. You see him as this spoiled child who’s throwing that temper tantrum because something, you know, to us seems so small that didn’t go right. But to them it’s significant. It’s hard for them to process it. And the lengthy talks that we have incorporated into everything that doesn’t go right to turn it into a lesson, and explain why things are going the way they are and try to help, navigate through so that they get it. It’s not easy finding the correct language to use so that you don’t frustrate them that much more. It causes a lot of stress on mom. Tammy: Absolutely. Absolutely. Mother: Because it’s a lot of trial and error, and with family you get stuck in the middle of that because you’re trying to do what’s best for your child. But yet, you are trying to get them to understand and you don’t want to offend anyone by not doing what they have suggested. But if you go back at them with any sort of evidence then they are upset. Even though they’re meaning well and trying to help, they are mad because you didn’t try it. And it’s just- you feel like you’re stuck in the middle of a cyclone. Because everything around you it’s just spinning so fast. Tammy: But everyone else gets to conveniently leave the cyclone except for you and your son, right? Mother: For sure. You’re exactly right. And it’s so crazy because when it comes down to it the more schedule oriented we are, the most smoothly things go, and the better days that he has. But if we are off task, it’s hard to get back on. I didn’t realize how hard that could be until I started reading and understanding what we are dealing with. And now it’s like a light bulb moment and to me it’s becoming second nature. When we took a trip over the weekend, to not come home is significant for him. He has his bed, a certain routine. We don’t mess with that very often. But when we do, we know it’s going to be bad. And so we talk about it for days. I have family that would say, “You’re treating him like a two-year old”. “You are talking about this way too much”. And I’ll say, “But we need to talk about it so that our trip goes better”. If I don’t, his behavior is going to be horrible. And I get the push back. “He’s 11, he knows better”. Theoretically, yes. But with what we are working on, it doesn’t click. It’s ok. We talk about it, we’ve got it all figured out. Just don’t mess with his routine and it will be ok. Once we get there, it’s fine. And he’ll have fun. But we have to work through that on a daily basis. We talk about his school schedule on the way to school every day because he has a couple of classes that change. It’s ok. If we don’t, he gets confused. Tammy: So it’s very important for him to know what to expect. But if that’s expectation is disrupted, it’s very anxiety participating for him. Mother: Oh, for su...

In this episode, we speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD). She discusses how the condition affects the family dynamic and what a good day looks like. Transcription Voice: Welcome to the Just Ask Mom podcast where parents share their experiences of mothering children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD). Tammy: So why don’t you tell us a bit about yourself? Mother: I have 3 kids, 3 boys, ages 1 to 12. My oldest son has a mental health diagnosis. He’s right now diagnosed with the DMDD. Disruptive Mood Dysregulation Disorder. He was severely violent, had to be removed from the home for a total of about a year and 8 months, 2 different placements. Now he’s in the home, he’s non-violent for the most part but I have worked and then trained to restrain him, if need be. And I also went to school and have my Bachelor’s degree in Human Services. I switched to human services because of him. Tammy: Very good. So, before we start, I’m going to ask you to tell us a little bit about yourself before or beyond mothering? Mother: Well, before mothering, I was a teenager. So there wasn’t a whole lot going on. But it wasn’t until recently that I started to decide that other than mothering, I needed some hobbies. Most of my time was just spent mothering. So, I decided to help with just giving myself something to do other than the kids. I’m really into running. But I don’t like running in the cold. So then I had to figure out something to do outside of running to really get rid some of my stress so, then decide to start painting and like kind like those wine and canvasses people go to. But I don’t drink, so I find them on YouTube and I do them at home. And so, for about their hour worth of work it takes me about 3, but I do the paintings at home. Tammy: Oh fun. Mother: And so I really like [it]. I do painting and running. Tammy: Very nice. So, I want to ask you to pretend you’re talking to your coworkers, right? What would you want them to know about your experiences as a mom? Mother: Just how much time and effort it puts in, not with just my mental health son but all of my children and that trying to balance, making sure all the kids have the attention they need. I don’t think anyone realizes outside of our household really what it takes to raise a child with mental health needs. What a typical night looks like in our house, it’s not just having fun and getting through homework, it’s a very regimen routine. We have to stay very on top of our routine, we can’t just fly by the seat of our pants. Everything is very much — 3 out of 5 nights during the week we have appointments. The other nights are ball practices. Everything is laid out on calendars. We can’t go off of the routine otherwise we spend the whole night with a kid that’s having a meltdown because we went off of a routine and he didn’t expect that. It’s a very much different type of household and very much a different type of atmosphere having a household where there’s somebody that, you know, has a mentality of a 4-year-old and he’s 12. Tammy: How do you keep that schedule because a household is not an institution, things happen — like you have to cook dinner and so on. How do you try to maintain the schedule? Can you give examples of how it’s hard to do that at times? Mother: It is extremely hard to do. It means a lot of times where I’m one-on-one with my son and we both are left out of doing things as a family. On a lot of times, it’s just me and my oldest son. We’re together if he’s having a rough day– it’s me and him having a rough day together. It’s me and him that are together all of the time. Luckily, I am blessed with having an employer, and it’s taken me 12 years to find an employer that completely understands. I work for a school district where the principal came from a large school district and he understands mental health and he allows me to be home when my son needs me to be home because we don’t want my son not to make it through this. And so when my son can’t get out of bed and can’t make it to school, I’m allowed to stay home. But me and my son are very much left out of the rest of the family. My 16-month-old son, him and my husband and my other son go and do a lot without us if my oldest can’t go. And that’s terrible and that’s–it’s very sad, I don’t mind it so much and people, “Oh, poor you.” [but] I’ve lived my childhood, it’s not poor me, it’s too bad for my 12-year-old, it’s very heartbreaking for him. I don’t care what I miss out on, I care that my son can’t live a normal childhood. It’s heartbreaking for him. it doesn’t matter what I miss out on.  I just wish he could have a childhood and that’s where it hurts the most is to see him suffer and to see he can’t get out of bed because it’s Friday and I don’t even know most time why he can’t get out of bed and the voices in his head are mad at him that day and they’re telling him that he’s going to get hurt at school when he knows he’s not going to. That doesn’t make sense to most people. Tammy: I think it’s hard to see any of your kids suffer in any way and this is particularly difficult, right? Mother: Yeah. And I cut his chicken wrong, so now he has to go bed for the night, I mean, that’s…what? Tammy: Do feel like you’re walking on eggshells sometimes? Mother: All the time. All the time, and really you just can’t get mad at him for it because he can’t control it. You just have to let it go and be like, “Okay, well, that’s how our nights going to go.” Like, alright, cool. Tammy: So, right now where would you say you are? Do you feel like you’re swimming, drowning, or treading water at this moment? Because for many of us, it differs from moment to moment. Mother: It does, I feel like everything’s hour by hour. Monday, he didn’t make it to school but today’s Wednesday and so I feel he’s at school and I–so I’m treading water. Meds are doing okay, we’ve made it to everything today and I haven’t gotten a call, so I’m treading water pretty good. Tammy: That’s a good day. Mother: That’s a good day. Tammy: That’s a good day. Mother: He’s at school and I’m doing what I want to do so it’s a good day. Tammy: That’s awesome. So, what’s your self-care routine or if more appropriate, survival technique? Mother: Survival technique would be to know when to walk away. I’m not a single mother doing this–know when to tap out with my husband. If my son is getting– he doesn’t get physically aggressive anymore but verbally aggressive — it’s to know when I’m getting verbally aggressive back or when I feel like I’m getting upset. It’s to know when to tap out with my husband. Or even to listen to my husband when he’s like, “You need to stop and you need to walk away. You need a break.” So that’s my survival technique. Self-care is just to take time for myself. It was my 30th birthday recently and my best friend made me take the day off and we went to the mall not to shop but to do like get our nails done and to get the 5-minute massage. That sort of thing. I’s just taking time for yourself. Tammy: That’s so important. What do you think is your most laughable moment? Mother: I couldn’t think of a most laughable moment but it’s just finding something to laugh at. Because every day there’s something funny to laugh at and everybody gets so stressed out. It’s just always finding something funny for the day. Tammy: Wonderful, is there anything else you’d like people to know? Mother: I don’t think so. It’s just about reaching out to someone. Somebody’s going through something and just making sure — everybody’s having a hard time and there’s always someone having a bad day. So if someone treats you like crap, you know, just realize they’re going through something. Tammy: That’s a great advice. Thank you so much for sharing your story with us. Mother: Yes, thank you. Voice: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com. [End]

In this episode, Alissa shares her journey as a single mother raising 5 children, both biological and adopted through the foster system, and having a wide range of special needs, including physical, intellectual and emotional disabilities. She discusses how to stay centered in the tough times and how self-care is required before we are able to give to others, including our children.   Transcription Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we are speaking with Alissa, a mother of five children, including biological children and children adopted through the foster system. She works in Human Services helping other families with mental health needs as well as other special needs. Tammy: Well, why don’t you tell us a little bit about yourself, to get started. Alissa: My name is Alissa Tschetter-Siedschlaw. I am a mom of five. I’ve been a single mom for ten years, although I recently got engaged. Tammy:  Congratulations. Alissa: Thank you. Tammy: Oh, that’s exciting. Alissa: My children range in age from 24 down to 9. I have both children that are biologically born to me, and children adopted through the foster system, with a wide variety of mental health, developmental, behavioral, and medical special needs. I work full time, well, actually no, I’m part time now, in human services, helping other families. I also do professional theater, by contract. Tammy: I didn’t know that. That’s really cool. Alissa: You didn’t? I finished a contract recently and I have a Shakespeare contract coming up in the summer. Tammy: Oh, how fun. Alissa: Yup. That’s what my training was originally in, theater performance. Tammy: Well, my next question –  and you might have partially answered this –  what are you passionate about? Tell us a bit about you, outside of, or before mothering. Alissa:  I am passionate about arts. I’m passionate about advocating for those who can’t speak for themselves. I was before this. I’m passionate about taking care of the earth, taking care of other people, treating people the way you would want to be treated yourself, trying to make a difference, and fighting against – whether it’s discrimination, or fighting against systems that don’t understand where loopholes are for people, or whatever. I’ve always been passionate about those political things and those kinds of things. I love lots of forms of art and exercise. I like to exercise. That is my medication. So yeah, those are the things. Tammy: Great. Well, that’s awesome. So I want you to pretend that you’re talking to — In your case, you have five children, with multiple special needs, so I’d like you to pretend you’re talking to a parent with, maybe two or three kids that don’t have special needs. And try to give them some insight into what are the extra challenges. Alissa: I think, it would be almost impossible to explain to someone else in that circumstance. What I would probably welcome them to do is come see a day in my life, or experience another family like mine. Because there’s a lot of things you don’t know until you know. A lot of very compassionate, very loving people, can say very callous things, because truly, –  it’s never crossed their mind. They’ve never thought about the kinds of problems we might have before. So sometimes, I try to explain from a place of education – without being patronizing- sometimes, just even in gaining compassion, when I have one child that I adopted, who has a tremendously tragic story. There’s not many people you could explain such a rough beginning and not pull at their heartstrings, and then, say all the things that her life is like now, and how it is to go home to a child, who’s functioning much slower than her physical size, who might have a psychotic break, and bite you, and attack you. People have a hard time even wrapping their head around those things, so I kind of wish more people could peek into our lives, because it is such a hard thing to understand. I think it’s like a lot of things that might seem unpleasant to people. We all want to pretend that certain things aren’t out there. It makes you feel like you can survive.  I know myself –  there are times when you hear some horrendous child abuse story – we all want tp  say, “No, that’s not, it can’t be. That’s not real.” Sometimes I think, our lives can look like that. I think it’s very scary to those who don’t experience that. I think it’s also why we so easily bond with each other, because so rarely do moms like us truly feel understood. Tammy: Yeah. Alissa: Where maybe if I am in an IEP meeting and seem snappy and bitchy or something, other moms like me would get it and go, “You know what? You’re just cutting out the BS, because you’re tired, and you’ve probably been up all night and this is your third meeting of the day, and I get you.” Where, to an outside person, it’s like “Wow this mom is difficult to deal with”. I think so much of it would be welcoming somebody in, to see a picture of what it looks like. Because I don’t think it’s something most people can wrap their head around. Tammy: It’s interesting you say that, because even if you had a video of it, it’s still removed, because… Alissa: …because you’re not in it, yeah. Tammy: I don’t know the neurology of this, I just know when my child has anxiety and I’m in the same room with my child, it starts to affect my body. Alissa: Oh, absolutely. Tammy: So if you’re in a situation like this, day in and day out. Alissa: Well, it absolutely does. I actually think some of the best things, you know, you maybe ask what this in a little bit –  but some of the best things I’ve done for myself, have to do with energy worth, and learning how to stay centered and calm, in the midst of chaos, rather than allowing yourself to snowball in the chaos. And realizing that chaos isn’t me, and it isn’t my own. And so, to be able to stay calm and centered in the midst of that, does reduce behavior of those around you, just naturally. It’s like tossing a pebble into a pond, and watching the ripple. If my pebble is a calm and centered and neutral pebble, it doesn’t get pulled into that. Because anxiety’s contagious. Tammy: Absolutely. Alissa: And it’s very, very easy for that to happen. And I would say, over the last six years, doing a lot of work, with my own therapist, with my own energy person, with a lot of alternative things like that, finding ways to do what I can do, because I can only do me when it comes down to it you know. And so, hopefully, my ripple is different. That helps reduce the amount of severity of my own reaction to the children. Tammy: If it’s okay, I’d like to follow that up, because it’s one thing I notice, when I’m around the other moms, who go through this. I realize I’m drawn to them more than other people now. And part of it is like you say, they understand. But there’s something else, and it’s hard for me to sometimes put my finger on it. I think, in order to survive this, you have to do exactly what you said. To some extent, you have to center yourself. You have to understand that, if I’m going survive this, I have to not be carried away with it. And that’s a life skill that transfers everywhere else. Alissa: It absolutely does. I think, in general a lot of moms like us tend to be overtly authentic. Which I love. For some people, that’s extremely off putting. Because I’ll just tell you flat out. Tammy: [laughs] Yeah. Alissa: You have a question you want to ask me, or somebody wants to discuss some topic. I don’t care. I’ll tell –  because, I think, when you’ve gone through these kinds of things, it is just different. I do think there is an ability to be raw and authentic, in a way that I think is a tremendous life skill, that I have gained, from a very difficult experience. Yeah. Tammy: Right. Well, thank you for that. That is really helpful. So you have five kids. And I know just having two, how difficult it can be, making sure the sibling is getting attention, and so on. What do you wish you could tell your kids? Like, and you could pick a few, if you want, like one of the time… Alissa: Absolutely. Tammy: That’s five intersecting lives and so many various complicated ways… Alissa: Well, the one thing I do know that my kids know is that I would fiercely and vigilantly fight for what they need. Unfortunately, looking back, I feel like I have been more of an advocate than I have been a mom. That part hurts my heart. I didn’t have all of the sit down and play and do fun things together, or let’s go do some fun activity, especially when I had so many with so many special needs. Our activities were physical therapy, occupational therapy, speech therapy, behavioral therapy, treatment, med management. I grieve that – that I don’t think my children will look back and remember me as a fun mom. I don’t think they’ll have those memories. But I do think my kids would tell, “If you were in a pinch, who do you want in your corner? It was my mom.” So that part I’m proud of. What I’ve had to do –  this usually does make me emotional – is let myself off the hook a bit because under the given circumstances, especially being alone for so much of it, I did the best I could, with what I had at the time. I apologize when I need to. I make the kids aware that I am a human, with faults, and I am so sorry, but I’m doing my best, and how much I love and adore you. I believe in a higher power, and God brought us together for a reason. And no matter what, even when I’m confused, and I don’t know what the reason is, or any of those things, I’m confident in that. I try to stick with that. That part can be, can be hard- I don’t think any...

In this episode, a mother and grandmother from Iowa talk about the difficult journey of changing diagnoses, medications, and symptoms during the early childhood of their son and grandson who has Tourette’s Syndrome, OCD, and ODD. They discuss the importance of support groups, recognizing your own needs (especially when they might be different than the needs of your family members) and making sure to honor them. In their case, the need to be social and get out with other people.   Transcription Speaker: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother and Grandmother from Iowa. Today they will be speaking about their elementary school-aged son and grandson who has Tourette’s Syndrome.   Tammy: Today we’re doing something a little bit different. We have a mother-daughter pair. I’m going to ask you both to just tell us a little bit about yourselves? Mom: Okay, I’m an Iowa mom. I have a son who has Tourette’s, OCD and ODD –  major diagnosis there. Yes, some other ones too. He’s at grade school and we live in Iowa. Tammy: Great. Grandmother: And I’m the grandmother of a grandson with mental health issues and I’m here to support my daughter and my grandson. Tammy: Great. So before we get started, I’m going ask each of you just to tell us a little bit about yourself before mothering. What were your passions? Or outside of mothering, what do you enjoy or when you fantasized about the kid’s going off and you having a moment to yourself, what would you do? [Laughs] So just what’s interesting to you as a person? Mom: Oh boy. [Laughs] Let’s see. I used to like to sleep. [Laughs] Like I would sleep, stay up watching movies on TV and then go to bed late and stay up late and then sleep in late. Tammy: That sounds so nice. Mom: Yeah. [Laughing] Grandmother: And I as the grandmother, prefer reading. Used to enjoy dancing but as the kid’s say, “Oh, yuck! Not that.”[Laughing] and gardening. I like to garden and just be current. Go on little road trips. I do fantasize having a palm tree in my front yard and a big lounge chair on each side. Tammy: That does — especially during the winters. That’s a very attractive thought. Grandmother: Yes. Not, not a real palm tree –  artificial – so I don’t have to worry about it dying but –that would be happy. That’s looking at happy in my eyes. Joy. Mom: If going ‘happy’, I want the in ground pool at the backyard. [Laughs] Tammy: [Laughing]. That sounds good too. Grandmother: Just a fantasy. Tammy: Awesome. Well, I want to ask you to pretend you’re talking to families who are feeling lost. They don’t have a diagnosis yet for their child but they know something’s going on. I’m wondering if you could tell us what would you say to those mothers? What would you say to family members or relatives, grandparents? As families are going through this and trying to determine what’s going on with their child? Mom: I would just say something that helped me was to just research, research, research. Again, the internet, I googled everything. You know and then we kind of fell into a support group that helped us. There was a children’s therapy center. We didn’t actually go there for therapy because our insurance didn’t cover it. But we found out that they have a support group there on Saturday mornings. So we thought, you know, let’s just go and try this and see if we can meet other people that have kids that may have issues that can help us and stir us where to go. And so that really was our saving grace. Grandmother: That’s true. I find — getting into this in my estimation, doctors really don’t know a whole lot. And each doctor you talk to has a different field of expertise. And they want to lead you down the path that they think you should go. Even though it may not be the right path. And so you’ll go down that path and you realized nothing is changing. So then you go back and you try and find another doctor. You start all over again and hope for the best. And that may not be, it either, it, it just is — it’s been — with the support group and talking to other parents that have saved us in. It took, it took months before we were actually able to face the fact that well, my grandson had a mental illness. We did not have it at least recognized in the family before if it was there. No one knew about. No one was directed to any special person to take care of it. So it was new to us and we were, we were just lost. We were just– Basically, we were, we were out to sea and we have no life line until we found the children’s center and then we found out that there are other people who are in that similar situation that we’re in. Tammy: I think one of the things with children’s mental health, in particular, — what you’re saying so far is true of any kind of illness, right? Physical, mental. If you don’t, it — just finding out what it is, you’re at sea until you know what’s going on. What’s particularly difficult with children’s mental illness is their brains are developing and changing. So even if you get a diagnosis, that might change. So you can be lost, found for a little bit, lost again [laughs]. I’m just wondering if you’re can talk about?  Has that been some of your experiences as well? I mean it’s such a journey and how does having a support group help? Even once you find that support group — is that journey helped with the support group as well or…? Mom: Well, I mean the support group has definitely helped us because there were periods where we would go through really, really deep lows with what was going in the family. Then you kind of get to a point where you can celebrate one day [laughs] One horrible month might have a good day and you need to learn to celebrate that. It just helped us going to the support group and talking with other people because they would sometimes say the same thing and we could learn that the kids’ behaviors might be based on seasonal changes –  or just significant life changes. Grandmother: Yes. Children don’t like change in their lives. And it often happens. They can’t prevent it. And they don’t know how to deal with it when it does happen to them. We found through dealing with all of this that we have to try to change with them and help them through it. Medication was a big thing. What might work for two weeks will suddenly not work at all and then you get another medication. Pretty soon several medications and it just does not work for their little bodies. Tammy: Yeah. There’s so much changing at once, it’s hard to know what’s doing what. I think that’s right. What do you want people to know as their trying to navigate this? So reaching out is one thing. I’m hearing.  How do you manage to have hope during that time? To sort of push your way through and take care of yourself during that time? Because it’s rough. It gets pretty dark, when you’re not sure what’s wrong with your child because we want our kids okay. We want to keep them safe. Grandmother: And when you do find out, often times, you are, sad to say, shunned. Tammy: Yes. Grandmother: Because you have a child that’s different from most of the children in the neighborhood. And they look at you and say, “We know who you are but we prefer not to be with you because your child is different. Your child cannot relate to ours”. And, and in our case, we have a child who can relate better with adults than with children.  – He can start talking to any adult on their level and I have had many of them come back to me and say, “What a nice young man you have there. Very pleasurable, very knowledgeable. Very nice”. But on his pure level, he just cannot communicate with them. They don’t essentially get him. And that has been extremely difficult for him and difficult for me because I know he’s trying so hard. But they just don’t see it. And oh the pain just hurts so bad to see them making fun of him. But I don’t, I don’t know how to combat that, we just go on our merry way as best as we can. Tammy: Yeah. It’s so painful to see your child suffer, but when it’s out of the cruelness of someone else… Grandmother: …it’s even worse… Tammy: …it’s worse… Grandmother: Yes. Tammy: I think because that can be helped, right? Grandmother: It can. Mom: A lot of it is just the misunderstanding. Because they don’t understand what’s going on with that other kid because the kid looks “normal”. They’re thinking, “Why is the kid doing those weird things. Why is he saying those weird things? Why is he acting like that?” Sometimes you hope that if you would just explain it to them, they would get it and they would understand more. And sometimes they don’t. And sometimes it just takes more education and they do end up understanding more and coming along and then they get a better picture of what’s going. I would still say just reaching out to other people because even in the support group we found a couple people within the group that we were able to reach out in really difficult times and just call them or text them or email them and say, “I need you to meet me for a coffee out my backyard”. [Laughs]. Because I’m barely holding on by a string. So just making that point with somebody else. To know that they’re there. And then you talk and you laugh for like 20 minutes. And then you could go back to doing what you were doing. You can go back to fighting. Grandmother: Yes, it is important to have someone that you can maybe bond with over your problems that might have the same problem. Tammy: Yeah, I think that’s important. So, we’ve been asking everyone this – and from my own experience, it changes from moment to moment – most people I talk to say the sam...

In this episode, a Grandmother tells us about raising her grandson who experienced trauma and suffered from several conditions, including ADHD, anxiety, bipolar, and learning disabilities. Please note that this story discusses child abuse and may be triggering for some of our listeners.   Transcription Speaker: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a Grandmother who is raising a grandson with mental health and learning disorders. Tammy: Okay. Alright. So just to begin, just tell us a little bit about yourself before or outside of mothering, just about who you are. Grandmother: Okay. I’m a mother of two boys who are grown, and um, they seem to have a fairly happy life, one has moved back to go to school, and one of them is still living on his own. After my second marriage, my husband had a son, who was a substance abuser and he abused his young son when he was very small. And we took him, in fact we took him because his father asked us to take custody of him so he could get back at his wife for doing things he didn’t like. He didn’t really think we should take him, he just thought that this legal thing would make his wife afraid to talk to anybody. And we got the papers and our lawyer talked him into guardianship, which means you can make all decisions for the child, and when he was hit and really, and really only minorly, we said, “You don’t have to go back.” And he was very happy about that, and he recently told his psychiatrist that was the happiest day of his life. He was six at that time. We have had him now, and he just recently turned eighteen, and he’s moving into this town to live in supervised housing, because he has mental illness and he has intellectual disability. And so he needs to be supervised twenty-four seven, and they offer quite a bit of other programs, things for him to do like go to a parade, or go to the park, or—really not things that cost a lot of money, although occasionally they do, but they get passes to the fair and — what not. And so this is his first day, and he’s very happy about that. Tammy: Wonderful, wonderful. What would you like people to know about your experience? Grandmother: I would like them to know that often, children only show the surface of what’s going, we sensed abuse but it was only later when he told us– about a month later, he told us he had been sexually abused, about a year and a half later he told us that his baby brother who had died of SIDS was actually murdered. So he was keeping this all inside. We needed to get help for him, and I really would like mothers to know that, although it just breaks your heart to take a small child to be in residential treatment, that sometimes it’s the best thing and it’s definitely not a horrible bad thing. He was kind of like, “Bye, mom” (that’s what he called me already. They said he cried a little that night, but that’s all. And he learned so much in the various times he was in the residential treatment, and the last time he was in he got into a program that was for both mentally and intellectually problematic children. And I wish there was more because, to my knowledge, it’s one of the few places that has that, and he’s in a– was in place that only took care of eight children. Tammy: How did that help him? Like, what was positive about it? Grandmother: One of the best things he learned was coping skills, which as a peer support specialist, I know is one of the first things you teach people who have mental illness is how are you planning on coping with this? It might just be cuddling with a soft warm blanket, it might be setting boundaries with other people that says, “I will not pull up with that.” It might be a warm bath, it might be running or doing yoga. Everybody has their own, but you teach the children that we are all unique, and they have coping skills that they can use. And they teach parents the same thing, because when you put a child into residential care – or a lot of times they don’t get to stay as long as he did –  but when you put them in, they have a goal in that time which is often 9 months to a year of learning these coping skills, which they then come home and use, and you’ve been learning them also. Tammy: Right. So in trying to get help for your grandson, what kind of things were either barriers you ran into, or really great successes that helped you? So it sounds like one success was a residential home for him, were there any other things that either were really helpful or didn’t go so well? Grandmother: One of the barriers was — and many mothers and fathers and even grandparents like myself, don’t know that you cannot take a child to the emergency room and say, “You can’t believe how this kid has been behaving this last month.” That does not count. A child has to have an acute problem to be admitted to the hospital which is often the best place to go, especially if they have a children’s ward for mental illness, because that way they can have their meds adjusted, which is a difficult thing to do at home. The doctor we had took him off of everything, and then slowly added things back which could be dangerous actually. So we were told- and thank God we were told- “Don’t ever go in and say: “You won’t believe how it’s been for the last month.” You have to say, “Yesterday,” –  not even ‘yesterday’- “Today, my son woke up and he is been talking about suicide.” He was only seven actually when he first did this, and he wanted us to die too, because he wanted us to go along with him, he didn’t understand death. When we said, “No, we wouldn’t do that”, and tried to explain death to him, he said, “Well then, I’ll take my cat.” We woke up in the morning and he was quite angry and I went in the back room and he was trying to strangle his cat. Tammy: Oh, my goodness. Grandmother: He had been acting up in other ways too. I can’t remember right now what they were but that was a clue that he was saying, “Mom, I’m so suicidal.” So I lied, I called the doctor the next day, because we were completely snowbound and had been for several days, we live in a country and our roads weren’t cleared, there was no way I could get him to the hospital, so we just watched him all day, all night, and then I called the doctor in the morning. That night he was still agitated and he had bit into a light bulb, because he wanted a weapon to fight bad guys with. He though glass would be a good idea. That was another escalation of saying, “Mom, I am really hurting, and I’m really scared, and something has to be done.” So I called the doctor and I said, “He did this and he did that”, and I made it sound like it was simultaneous, and it just happened that moment where it has actually happened the day before. Fortunately, he was young enough not to even know the truth, and so when I’m rattling off to the interviewer at the hospital, they are like, “okay” So I think that’s important for the parents to know, if you want to get help for your child other than outpatient help and which I think it’s vital if your kid has any sort of difficulty: ADHD, Tourettes– any of those things–you need to be under their care of a psychiatrist who understands the medications they are on. But if they need to be hospitalized, you need to know how to do that. Tammy: You’re right. That’s actually a common story that I hear, and personally have been through as well. If you don’t use exact right words, right? At the exact right time. Grandmother: You need to know the words. Tammy:  Thank you. That’s really an important thing to hear. So we ask people as they’re dealing with this –  we understand it changes as you’re going through this, how you are doing changes throughout it –  but at this moment do you feel like you’re swimming, treading water, drowning – where do you feel like you’re at in your journey? Grandmother: I feel like I just got out and toweled off, because my kid is, today, in a group home, where he has twenty-four hour supervision. He is not healed, but he is able to cope with most situations. He knows what to do when he’s angry, what to do when he’s frustrated. He even tells me sometimes. Maybe my husband and I have words, he’ll say, “Mom and dad, stop that! Use your coping skills.” [laughter] and he’ll guide us. Like, one day I said to my husband, the next day, because sometimes it’s best not to fight in the midst of it, I said, “You know? What you did yesterday really bothered me and I would appreciate it if you would do such and such.” And later after we had this little talk my son (my grandson had been listening) and he said, “Good job, mom.” [laughter] He’s come a long way. We got him when he was six. He’s now eighteen. He first stint in residential care was about nine months. When he was seven. It was very hard to leave him. And maybe it’s even harder for parents as opposed to grandparents, but I knew we couldn’t handle it, I knew he couldn’t handle it. We were in a mix of financial changes in the government, so how we went about it was problematic, but we had it done. We got it done and we got him in there for nine months and he came out a somewhat better person. He went back exactly a year after he had been admitted before and we realized that that time that he was probably cyclical. Some children don’t even know what day of the week it is or what day of the year it is, but his bad time was October. When the leaves fall, when the nights get darker, he had sensory things that said, “This is when I had my bad time when I was little.” So every year –  and it’s gotten much better –  he has had a bad time, actually from October till spring. Tammy: Is that helpful at all on predicting? I mean, as you were taking care of him through all those years did that help you anti...

https://mothersonthefrontline.org/wp-content/uploads/2017/08/JAM004.mp3 In this episode we speak to Paula, the adoptive mother of two boys from foster care. One son has PTSD, Trauma, and Autism. The other son has ADHD, Tourette Syndrome, and Anxiety. Paula talks about the importance of not taking your child’s behavior personally, the gift of adoption,  and the importance of laughter. For a transcript of the podcast, go to https://mothersonthefrontline.org/podcast-transcripts/ Resources Mentioned in this Podcast 99 ways to To Drive Your Kids Sane by Brita St. Clair. – This little book is full of wild ideas and hysterical humor to bring the laughter back into a home with an emotionally disturbed child. Need a good laugh? This book will do it! It includes lots of “one liners” and silly, fun ways to help parents avoid anger around tough topics. Written by a very experienced and loving Therapeutic Mom with years of success helping tough kids heal. Transcription Female Speaker over music: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with Paula, a mother of two adopted boys. One who has PTSD, Trauma, and is on the Autism Spectrum. The other son has ADHD, Tourette Syndrome, and Anxiety Tammy: Well tell us a little bit about yourself. Paula: Well, I’m a mom here in Iowa. We live in a semi little town but it’s in a metropolitan area so we have lots of great things around us. I have been married twenty-eight years. Tammy: Congratulations. That’s wonderful. Paula: Which is a long time. [Laughs] Tammy: Yes it is. [Laughs] Paula: Especially  – I mean I am not quite fifty but still, we got married when we were twenty. I mean so we were late to the family thing. We wanted to wait, we didn’t want to jump in. And for a variety of reasons being foster parents and adoption was the way that we decided to go. So we have two boys, they are now fifteen and twelve. The first one we adopted when he was three and a half and the other one was seven. So we are no longer foster parents. I did foster care training and stuff but we are no longer foster parents. Because of the level of needs that they both have, they need our full attention. So I am now a stay at home mom, but professionally I am rehab counselor and mental health therapist. Tammy: Wonderful. So before we get started I always like to ask people about themselves before they were mothers or outside of mothering. So you told us a bit career-wise so just tell us a little bit about your passions and who you are before we get …. Paula: Well I love lots of things – my husband and I joke that we are renaissance people so we like lots of little things. Before we had kids we were married a long time, which I highly recommend. I mean we got married young, we were twenty. But we didn’t bring kids into our universe until year thirteen or something. Before we had kids though life was moving along beautifully, you know just the way it does, but it wasn’t easy, actually my husband is a stage four colon cancer survivor. Tammy: Oh wow. Paula: So when we were thirty three, he was diagnosed with stage four colon cancer and at that time in 2001,  less than five percent survived stage four colon cancer. So um we were one of that five percent and so that definitely informs the way that we view the universe. We’re in year what?  that’s 2001-  so somebody else do the math  –  fifteen years that he is still you know alive, healthy, we had no recurrence. We went through everything you know all the chemo, liver resection, all the worse things humanly possible. So for us every day is a gift even after fifteen years. We often joke that I should have been widowed  –  had I been widowed what would I have done? That is what we worked on. You know in therapy — how do you deal with your life and literally I would have had a farm house with a bunch of foster adopted kids. Tammy: That’s your passion. Paula: So that’s probably what I would have done. I grew up in foster care and my mom had serious mental illness. She was bipolar rapid cycling and so this was something that was always on our radars to be foster parents and given the biology of our bodies, adoption was the way we decide to have a family. Tammy: Wonderful. Thank you for that. So what would you like people to know?  You have so many rich, great experiences. What would you like people to know? Paula: When I do trainings on trauma development and the way our brains work, my favorite thing to remind parents –  and it is so hard as moms, oh my goodness,  it is so hard – is to not take it personal. One of the stories that I share in my trainings is about when my son was five. He was very big for his age, he wore size eight, nine or real close. He is a big boy. I mean he is tall now too. But he was a big boy. He would rage and when you have a child that has trauma you can’t allow them to rage alone because it’s not that they need to calm down. You need to be their container. Mentally you need to be a container – a safe place for them and so, one of my favorite ways to remind parents not to take it personal is, he was in the middle of a rage and he just, his caveman brain was just in charge he couldn’t handle what was going on and we were sitting on his bed and I had my arms around him. He was sitting, on my lap and you know he was just in that fully fledged bucking mode and he bucked back and he hit my nose so that it hit the bridge and I got a hairline fracture. Tammy: Oh. Paula: If you have ever had one of those, you would rather have your nose broken. The hairline fractures are unbelievably painful but where I teach people not to take things personal is in that moment when he raged and hit me, cause I wear glasses. He hit me and I felt the pain, I knew instantly – this was just the thing that was going into my head: “If I say something now this could undo all the work we have been doing to help him bond and heal. “So I just held him for a moment and I said,  “honey I love you, I need to step out” and I stepped out and went to our bedroom, put my face in the pillow and screamed [Laughs] Some very colorful words. Tammy: I bet [Laughs] Paula: Took off my glasses and I went back in and finished helping him calm down. And then we went and figured out what was wrong. That’s a prime example of not taking it personal. Yes, he physically assaulted me. He broke my nose. That hairline fracture  –  I wore a little lightweight plastic glasses –  I couldn’t even put those  on –  but it wasn’t personal. It had nothing to do with me. What was happening was not to me, it was to him. And so always remembering that, so that’s my extreme moment of even now as a teenager when he does things I have to remember, he is not saying this to hurt me, it’s his coping skill. And even when he does now he will say, he will, you know, use the “B” word and so he never uses it anymore because we turned it into a joke and I am like, “you know what buddy I really am and I am really good at it so thank you for noticing.” Tammy: [Laughs] Paula: And he stopped. [Laughs] Tammy: You took the fun out of it! [Laughs] Paula: Yes, I took the fun out of it. But also I deescalated it and didn’t take it personal. And so that’s one of my biggest wishes for moms is to not take it personal because it is so hard to not do that. Tammy: Right. And as is the case with so many of these interviews so far, you are telling us something that is especially true when you have a child with mental illness, but this is true for all parents. Paula: You know I’m glad you said that because our best friend, I love her – she says when she talks about us to other people or she even complains about her children, one of her children is the same age as mine, fifteen years old and they have been in school several times together and she will complain about her daughter doing something and then she just looks at me and smiles and she goes, yes I know Paula, it’s that, plus. So everything that happens in quote ‘regular lives’ is what happens to all of us. Tammy: Absolutely. Paula: Which is stressful. Tammy: Oh yeah. Paula: Being a mom of a teen is stressful. Tammy: Yeah. Paula: But I like the way that she articulated it. She is like, you know what, you guys have all the normal stress plus. And so it’s not that these techniques that we use with our family aren’t good techniques for everyone, it’s just that we have to be more cognizant of it and more mindful of doing it and the reason we are doing it. Its not accidental, that we use certain language or that we talk about topics more in depth than your average parent. Its purposeful and so I like that because she will do the same topic with her daughter and then she is like yeah, but you guys have to do the plus. So that’s kind of how I view our life work. Like everyone else, plus. Tammy: Plus, exactly, yeah. Well that’s, I think a really helpful lesson. Is there anything else that you would like people to know in general. I mean you have done, by the way thank you, I always think we need to say thank you when people adopt children from foster care because you are doing not only something wonderful for those children but you are doing something for our whole community. Paula: As a mom we feel guilt a lot and we feel the weight of the universe on us. And so again our friend that says the plus, I have stopped working for the past four years, almost five now. I got my Masters Degree and then I stopped working. So we were like, oh ...

https://mothersonthefrontline.org/wp-content/uploads/2017/07/episode-3.mp3 In this episode, Emily talks about her journey raising a young son with Tourette’s Syndrome. She talks about the importance of community building on many levels, including strengthening relationships within the family and marriage, her church, her son’s school, and the larger community. By educating those in their lives about Tourette’s Syndrome, her son can be himself and feel part of a supportive and understanding community. She also discusses the importance of intentional planning of self-care and ways to make it happen. Topics include: Tourette’s Syndrome, Self-Care, Family, Community, Advocating for your child at school. Resources mentioned in this podcast: Tourette Association of America  – (Formerly known as the Tourette Syndrome Association) focuses on awareness, research, and support. Home The book: The Fringe Hours by Jessica Turner Transcription Speaker: Welcome to the Just Ask Mom Podcast, where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline Production. Today we will speak to Emily, a mother of a son with Tourette’s Syndrome, living in Iowa. Tammy: Well, I was wondering if you could just start by telling us a little about yourself? Emily: Sure, my name is Emily and I’m a wife and a mom of two kids. I have a daughter who’s seven and I have a son who’s nine, and my nine-year-old son has Tourette’s syndrome. Tourette’s syndrome is a neurological condition that causes a variety of motor and vocal tics. So, in my son’s case he has a coughing tic, blinks his eyes, will have shoulder raises and that kind of thing. So, we have just had the diagnosis for a couple of years, so we’re sort of new to all of this but he is a joy in our family and we’re just really learning how to best care and best parent him. Tammy: Awesome. So, before we get started I’m just going to ask you to step back for a moment and tell us a little bit about you either before mothering or outside of mothering, a little bit about you. Emily: Yeah, I have a lot of different interests. My faith is a really important interest of mine, I just really enjoy being a part of a church and that’s just a really important piece of who I am. I also really just love creating things so I love to sew, I love to bake, I love to make cards. They do have to have a finite ending to them. Tammy: (laughs) Emily: I’m not the scrap booker that can keep on going forever but I do love those short creative projects. I also love the Olympics and I’m a big Disney fan, it truly is my happy place. So, those are some of my passions and interests. Tammy: Wonderful, thank you for that. I want you to pretend that you’re talking to other moms, what do you want them to know? Emily: I would say that the thing that I would want them to know is how community is so important when you’re the parent of a child with Tourette’s syndrome or any special need. That community is a place where you can get support and encouragement but it really just helps you be a super confident mom and to be the best mom that you can be to your child. So, I thought I’d share a few places that have helped me in building community. One of them is just within the family itself. I asked my son before I came here, “What’s the one thing that I do as your mom that helps you as a person living with Tourette’s Syndrome?” He said, “You just make it okay to have it.” A huge compliment from him, but just making sure that our family is a place that he feels safe and comfortable, that it’s a place he knows he can let all of his tics out when he gets home from school, or he can talk to us about how his tics are making him feel. Building community within our family means spending a lot of time together and it’s figuring out what that is. So, for us we love to play games together. We enjoy Disney together. (laughs). Traveling is a big bonding experience too. I’ve heard too that in parenting children with special needs, there’s a high divorce rate, and so, any time [spent] on our marriage is really important to us. Tammy: Absolutely. Emily: Our church offers a marriage conference once a year. It’s kind of like a tune up, like you think about taking in the car. We do that or we might read a book together just to have those times when we are really building our family together, so that we can be the best parents to our kids that we can. So, our family is one. Like I mentioned, my faith is really important to me and so our church community is important. Building relationships with our pastors, in particular building relationships with our children’s pastor and the Sunday school director, the Sunday school teacher has been really important just helping them understand what Tourette’s syndrome is and how they can best help him, because as important as our faith is to us and being a parent to a child with this diagnosis, it’s important to him. Tammy: Absolutely. Emily: So we’re building our community. We also have a small group that we get together with and ours happens to have other parents with children with special needs. And so, it’s just a great place for us to get to share about the challenges that we have but also to celebrate with each other when we do experience joys in our parenting journey. So, that’s been a really helpful place. Building community with other moms is really important to me. I have a mom’s group of girlfriends that we get together like once a month just to go out for dinner, and again they have children with special needs, some of them, and some of them don’t, but we’re all there to just encourage and support one another in our journey as moms and that’s just been a really important routine for me. I just try to really block that out on the calendar and make that time for it. Tammy: Can you say a little bit about that, because I think that is so important, right? I’m sure there are so many things vying for your time. Emily: Yes. Tammy: It would be easy for that time to be taken over. Emily: Yes. Tammy: So, this has been something very intentional you’re doing. Emily: Yes. I have to keep the “why” in mind. Knowing that taking the time to be with other moms to get that encouragement and support will help me be a better mom, a better wife, a better employee; all of those things if I spend time with them. And so if I know that “why”, then it really helps me to block that out on my calendar. Tammy: I think that’s important. Especially I think moms, we can have a tendency to be like well, “I don’t want to be selfish,” Right? So, it’s not selfish it’s for all these other people that we’re taking care of ourselves. Emily: Yes. So, that is a really big one. Another one that has been important to me is the online community. And I was part of a local Facebook group of moms for my area and there was a post one time that another mom had put on there that she had a child with Tourette’s syndrome and I was able to message her. We ended up getting together at a park, meeting in real life. Her son was just a couple years older than mine, so I was just able to just ask her about what the challenges were, that we might experience in the future. She was able to give me some resources in our local area, medical resources, community resources that would help my child. And so, it’s just so amazing to build that online community and turn it into real life community. We also have various support organizations that are online so we have an Iowa Tourette’s support group and even though we’ve only done one thing in person with them, I just know that that’s a place that I can go if I have a question. I’m sure I can message any one of them and they would help me out. They’ve been a really big support in terms of just being there, available. Also, the Tourette’s Association of America has been incredibly resourceful. They do these webinars every month and I’ve just found as a mom, like, I can sit in my pajamas, I can watch it, and I can feel like I’m connected to people across the country, able to ask questions on their chat, or hear what other parents are asking and that’s just been a really big encouragement from the online community for me. Tammy: That’s wonderful. Was you son able to meet other kids with Tourette’s and how was that for him? Emily: He was. He was able to meet the son of the mom that I had met online, and that was huge for him.  I think he felt really encouraged getting to meet him. “Hey, there is someone else out there who’s like me.” There’s a huge power in that for me too. Tammy: Yes, yes there is. Emily: As both a mom and as a child I think. For him to hear a kid say, “I have Tourette’s too.” It was just so empowering for him to know “Hey, I can do this, you know, look at him, he’s a couple years older and he’s making it through school, and he has difficulties just like I do and we’re working on it.” And so, I think that was just really encouraging for him to meet others too. Yeah. Tammy: Thank you. I didn’t mean to cut you off though. Did you have others? Emily: There were others. A couple of other areas of building community that have been important. One is just at his school. Building relationships with people at school and it’s where they’re at such a big part of their day and we have been so fortunate to have a very supportive school that has been wonderful to work with. He’s had numerous teachers that have made the accommodations that he’s needed, that have listened to him, that have worked with us, that have contacted me...

https://mothersonthefrontline.org/wp-content/uploads/2017/04/episode-2.mp3 In this episode, a mother reflects back on her experience raising children with schizophrenia decades ago. She discusses the difficulty of coming to terms with the diagnosis of schizophrenia, how the National Alliance on Mental Illness (NAMI) Family-to-Family program helped her and her children through this journey and the importance of self-care. Topics discussed include schizophrenia, agoraphobia, NAMI, self-care, Transcription: Female Speaker: Welcome to the “Just Ask Mom” Podcast, where mothers share their experiences of raising children with mental illness. “Just Ask Mom” is a Mother’s on the Frontline production. Today we will hear from a mother and active Mental Health Advocate. She has an adult son with early onset schizophrenia. Tammy: So tell us about yourself? Mother: Well I’m considered elderly now, not middle aged. [laughs] I have lived with severe mental illness in my family for close to 18 to 20 years now.  I originally grew up in a small town in Iowa and was involved in everything that you could be involved in in high school. I got a college degree. Went to work for the federal government and raised through the ranks even though I was a woman. Because when I first started they didn’t want women in supervisory positions and I eventually got into them anyway. Tammy: That’s awesome, thank you by the way from us women who come later, we appreciate all that you did to make the path. Mother: Mostly, it was like two dollars and 40 cents an hour, that’s what I’ve initially worked. And at that time I was unmarried and had a son. The choice actually was being on welfare or going to work and it was the same amount of money per month. So. It was interesting. Tammy: So pretend you’re talking to other parents who might not fully understand your experience. What would you want them to know? Mother: Well, first of all, to take it easy on kids – especially the ones that have some special needs because they’re scared out of their wits by what’s happening to them. And they are always fearful that somehow you’re going to turn them away or make fun of them or be ashamed of them. I just found that he needed me to always have a smile on my face – that you have to make a concerted effort, not ever to be mean to them because that ruins the trust. The focus of a lot of advocacy work that I do is to keep families together. And not to blame anybody, because this is an illness without blame. It’s simply a medical illness and it’s hard to adjust to it. So we have to kind of give ourselves a break there too because I can remember being in denial for a long time and not wanting to accept it, not wanting to let go of my dreams for my kids. Finally its almost like somebody goes ‘whack’ on your face. “Wake up! This is going on and you need to do something about it!” I can remember the first time I tried to tell someone that my kids had schizophrenia. I couldn’t say the word. It took at least half a dozen tries before I could get the actual word out of my mouth. And then I started getting angry. You’ll get angry because you’ll run into a lot of people who simply don’t get it and somehow think your kids have turned into ‘its’, they’ve lost their intelligence, they’ve lost their emotions, they’re some kind of an oddity and you always have to try to turn their attitude on that. So I’m just interested in making sure that kids don’t have any more trauma than absolutely necessary if they have those special needs. Tammy: So how are you doing right now? Do you think you feel like you’re swimming? Drowning? Treading water at this moment? Mother: Depends on which topic. I think I’m swimming as far as things are going in our family. With what’s  going on at the State Legislature and nationally and locally –  I think we’re drowning because we are under assault on so many things. So once again, depends on the topic. Tammy: Yeah. What is your sub-care routine or if more appropriate survival technique? What do you recommend for people to do when it gets really tough? Mother:, I steered away from anything that was really serious. Like, if you were watching TV. Tammy: Yeah? Mother: I would make it a point to watch Disney movies because I didn’t want anything more to really alarm me. Also because you’re so involved with your kids during the day. Once they’re asleep, you know, that’s when I felt I could kind of let my hair down and I could cry after they went to bed. Or if I really needed to get out of my life and into somebody else’s I would read a book. Thirty minutes or an hour of reading before I went to bed would help. I was divorced at the time that this all happened and so many people have turned away because they didn’t know what to say. I didn’t realize it at the time but I was really hungry for a tender touch so one of the first things that I decided to do was to go have my hair done. Because somebody else is washing my hair and it always feels good when somebody’s washing your hair and fiddling around with it. It really didn’t matter whether it turned out nice or not. It was just the fact that it felt good. I also went to full body massages. And I’m going to go back to that. That always made me feel really good too. Physically I had to have some touch that reassured me that I was — I was still here. Emotionally I had to get out of my life into something else. So that’s what I did. Tammy: So, a lot of times if you’re not laughing, you’re crying or screaming, right? With all that you’ve been through, what is your most laughable moment that comes to mind? Mother: Oh, the most laughable moment – I had just taken NAMI family to family and one of my kids almost agoraphobic where they didn’t want to go out because they had so many panic attacks. They were afraid that no matter where they went, people would remember them and make fun of them or all that kind of stuff. And I came home from work one day and my child was sitting in the chair and I said, “ I just do not feel like fixing anything for supper, Let’s just go out and eat.” I said “we can afford it, so let’s just go out.” My child looked at me and said, “Mom, you know that I can’t do that,” and I knew because of the Family-to-Family training that there was a certain way I should respond to that. So I said, “hold on just a minute.” I went out of the room and found my book. [Tammy laughs] Tammy: They say kids don’t come with manuals, they don’t know about NAMI, I love it! [laughs]. Mother: I looked it up [laughs] and I tried to be calm, As I walked back in I said, “I’m really sorry I didn’t acknowledge that you have a hard time doing that. Maybe we could just order something and have it here. And she looked, she dropped her book and she says, “Oh my God, you actually acknowledge my feelings.” And here all this time when I was going to these classes I knew she was looking at the book. She had been going to a lot of therapy and she knew just as much or more than I did about what I should be doing. I just laughed about that every time. [Tammy laughs] Tammy: That’s awesome, that’s so  great. Thank you so much for sharing your story. I really appreciate it. Mother: Mm-mm. Tammy: Thank you. Female Speaker: In today’s discussion, NAMI was mentioned. NAMI is the National Alliance on Mental Illness and NAMI Family-to-Family is a free education program for family, significant others, and friends of people living with mental illness. You can find out more about NAMI and its programs at nami.org Female Speaker: You have been listening to Just Ask Mom, recorded and copyrighted in March 2017 by Mothers on the Front Line. Today’s podcast host was Tammy Nyden. The music is Olde English, written performed, and recorded by Flame Emoji. For more podcasts in this another series relating to Children’s Mental Health go to mothersonthefrontline.com [End]  

Anna discusses raising a son with childhood-onset schizophrenia on a Midwestern farm, the journey to the right diagnosis &amp; medications, and what there is to celebrate.   Transcription: SPEAKER: Welcome to the ‘Just Ask Mom’ podcast where mothers share their experiences of raising children with mental illness. ‘Just ask Mom’ is a Mothers on the Frontline production. Today, we will speak with Anna, the mother of a son with early onset schizophrenia. Anna: My name is Anna and I’m from the Midwest and … oh, gosh. I went to college for computer information systems, got my degree, worked for the railroad for a number of years in information systems and married a farmer. So it’s quite a diverse life. Tammy: Yes. Anna:  Yeah, that’s a little bit about me. Tammy: Very cool. Anna: I always wanted to be a mom. Growing up, you know, I always imagined myself with five kids and when I got married to my husband, I mean, I just really imagined our life as a typical farm family, lots of kids and dogs and, you know, running around outside and life didn’t happen that way. [music] So we have one son, and he was actually adopted from Russia. He was 14 months old and at the time. We always expected when you adopt a child from an orphanage situation like that that there’s going be some catch up. There’s going to be some things that you need to do to play catch up. Matthew always stayed behind, though. He never was able to catch up and working through that as he got older, more and more issues came out and come to find out when he was 13 he was officially diagnosed with early onset schizophrenia. [He] had symptoms starting at the age of eight and that was a very hard thing to accept as a parent, especially when it’s your only– I mean, it’s always hard, but when it’s your only child and you’ve gone through so much to get this child and um– I went through a pretty major grieving process, you know– Tammy: Absolutely. Anna:  So the thing that I want other parents to know: when you’re dealing with a child with special needs and that has such a serious illness, — it’s okay. It’s okay to grieve, it’s okay to grieve for that child that you had in your heart, that you expected, that you always pictured that you would have raised. That is a loss and you shouldn’t feel guilty about grieving for that child, but then you have to move past that. You have to get to a place where you accept that child for who they are. It’s easy to say and hard to do but once you get to that place where you have truly accepted that child for who they are and for their abilities– although they may be different than what you expected, you– you’ll find that things are easier. You’ll find that it’s not as hard to accept where they’re at and enjoy them for who they are and every day becomes easier. Tammy: This is especially a lesson you have to learn in this particular situation but what you’re saying is true for any parent. Anna: Sure. Absolutely. For any parent, any child. You can have a child that is neuro-typical but they don’t have the same likes as you do and they don’t have the same interests as you do and you guys are polar opposites and you still have to accept that child for who they are. You may butt heads but you have to realize they are their own individual. Absolutely.  I think for my husband, I’ll kind of speak to that little bit– he’s a farmer. He’s a typical Midwestern farmer and grew up in a very sheltered environment, you know, didn’t ever really have any exposure to the big city and diversity and things like that, and it was, I mean, he had it in his mind his expectations of his child would be that they would help him farm. They would grow up learning that and doing that and that wasn’t something that Matthew could do. That was really hard for him to accept and as long as he wasn’t accepting that, as long as he was fighting that internally, he was miserable. Once he was able to accept that, he could move on with his life and he could be happy and enjoy his son again. And so it’s not just for the child, it’s for us. Tammy: Absolutely. Anna: You know, and I’m not saying that everything’s roses once you accept that -once you learn. Some people accept that easier than others and it’s not all peachy keen after that. You still have to fight for your child. I mean, I got involved with Mental Health Advocacy here in our State because there is so much lacking and there is so much that needs to be done yet. It’s not fair. We should not have to become mama bears at the school and fight so hard for what is rightfully deserving of them. And it is still an issue but it doesn’t become all consuming, I guess, once you can accept that I think it frees you up a little bit to stop obsessing about what they can’t do and focus on what they can and then that helps you when forming that IEP [Individualized Education Plan] and when talking to the doctors and trying to find a medication that works, then you’re not as miserable doing all of that I guess. Tammy: Absolutely. One thing you and I talked about and I was wondering if you’d share here is (and this fits into what you’re talking about with expectations) is how your parenting changes because what your child needs is not the traditional method of parenting. Anna: Right.  Absolutely. Again, my husband is a farmer and he grew up, and myself too, I grew up in the Midwest. I was raised when I was young on a farm and then we lived in a small town and we were both very much raised by ‘pull yourself up by your bootstraps’ –  I mean with very common sense parenting and spanking was not unheard of. That was just how we were raised and that’s the example we had as parents and so when he was young and things would happen, I mean, we didn’t spank. That wasn’t really what we wanted to do, but we would use sticker charts, we would use timeout, we would use all the things that you could think of, grounding and taking rewards and punishments. We tried everything and nothing ever seemed to work. It was so very frustrating and you would get so angry and frustrated and then you find yourself raising your voice and you’re yelling and it’s constant and nothing ever works and you’re just pulling your hair out.  Once we finally accepted his diagnosis and learned we simply can’t expect the same things. We cannot put as many demands on them. That’s part of that acceptance process that I was talking about as a parent – accepting your child for who they are and what they can do and once you realize that, then naturally your expectations change and so your parenting style does change. Tammy: Thank you for that. That’s right. So, we ask everyone this. We know it changes from moment to moment. At this exact moment, do you feel like you’re swimming, treading water, sinking? Where do you feel like you’re at? Anna: I feel like we’re swimming. Tammy: Wonderful. Anna: I feel like we are– it just makes me want to cry. I think [laugh] because we have come so far. I mean we came from a place where, I would say five years ago I was not sure I was ever going be able to have my son in my house again. He was violent and we had to place him in the PMIC [Pediatric Mental Institution for Children] and we just didn’t know where to go. We had no idea where to turn for help. We could not control him any longer. I just couldn’t imagine him ever coming back home, ever graduating from high school, ever having a life that was meaningful to him. Let alone something that we could call successful. Today he is getting ready to graduate from high school, he has been back home with us for almost five years and he’s getting ready to graduate high school, he’s going to prom. Tammy: This is so wonderful. Anna: He is just– he is excelling in so many ways and I could have never imagined that. So, I mean, we’re in love with life right now. Tammy: A lot of hard work went into that. Anna: A lot of hard work went into that. It was a combination of the doctors and finding the right medication, getting the right diagnosis first of all and then finding the right medications, and then finding the right school. We ended up finding this awesome therapeutic school that he went to for about three years and they were just phenomenal. So finding the right school environment and changing our parenting style and having the right support at home. We had a waiver from the State that allowed some in-home assistance, you know, with therapy and things like that and all of those things created this beautiful movement towards putting him on the path to success Tammy: And now he’s a contributing member of society. Anna: Absolutely. Tammy: He’s working. Anna: He has a job lined up for after he graduates. He’s planning on having his own apartment. I have every reason to believe that he will be successful. Five years ago I couldn’t have imagined that. Tammy: Right. So, all of those services made all that difference. Anna: Everything made all the difference. It was not just one thing that I could point to, without one thing, without the others would not have had made much of an impact. I don’t believe.We had to change every aspect of his life to help set him up for success and help him learn about his illness and help him accept his illness because that’s a whole process too. Anna: And he knows, I mean, I have probably the biggest reason that I feel like he will be successful is because he knows he has an illness. He accepts he has an illness. He knows the medication helps him and he is absolutely adamant about taking that medication because he knows that helps him. So many times with schizophrenia people start to believe that the medication is making them sick –I’m not saying that that might not happen in the future. This is just where we’re at today, but he knows [the medicatio...