MOTFL 028 JAM 022: Kate, A Mother From Iowa

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...