Your Kid Belongs Here: Neurodivergence, Parenting, and the Right to Belong with Katie Rose Pryal

Welcome And Why This Matters

SPEAKER_05 0:22

Welcome to Real Talk with Tina and Anne. I am Anne, and today we have Katie Rose Pryal, a writer, speaker, disability scholar, neurodiversity advocate, and researcher. Katie has two kids with neurodivergence, and she also is neurodivergent herself. I want to tell you that I appreciate this book because I also have three neurodiverse kids, and I am also one myself. So you have so many great examples in this book of things that happen to neurodiverse people, and mostly kids, but we talk on this podcast how systems need to change. And I saw this again and again in your book. You just don't talk about your kids, but also how you were raised as a neurodivergent individual yourself. Times have changed, some for the good, some for not, but I would like to talk about how often we as neurodivergent individuals, especially kids, have to change to fit. I mean, still, which is crazy because we've been here a long time and we're here to stay. You know, we have to fit into environments that were not made for us. And what really surprises me at times is how individuals still allow the diagnosis to go into the room before our kids do. I would love to help discuss here all of this today in Katie's book, Your Kid Belongs Here, an insider's guide to parenting neurodiverse children. So welcome, Katie, to Real Talk with Tina and Ann.

SPEAKER_02 2:03

Thank you so much for having me.

When School Makes Differences Visible

SPEAKER_05 2:05

Before we get into the systems, schools, and everything else that you have in your book, I want to start with you, because you're not writing about it simply as a researcher or anything. You've lived it. Sometimes our kids struggle with something and we don't just understand it intellectually. We can almost feel what they're experiencing because we have been there. And I think that gives us a unique connection with our kids. We're not always trying to figure out how they feel. Sometimes we already know. And I think becoming a parent can make us look back at our childhood a little differently. When you watch your kids experience some of the same misunderstandings, rejections, struggles that you experienced growing up, did it change you and how you see what you went through? Has it helped you have more empathy for yourself?

SPEAKER_02 2:55

So the first question did it change how I saw my own childhood when my kids were younger. Oh my gosh, yes. Um, when they were younger and they were toddlers or whatever, and we just, you know, they they did go to daycare down the street, so because I worked as a professor full-time. Uh, you know, that they were just toddlers like any other toddlers. But umce they hit the school, sort of more rigid school environment and um bumped up against these systems that you're talking about that have these very rigid expectations of children, they'll say differences right now, uh, became more apparent to me. Um, and you know, perhaps to them at home. Before we encountered the outside world, I just thought everything was normal, like this seemed fine. You know, we we just were how we were. And in other words, they were like me. And so I didn't see them as anything different than how I am and was. Uh, and so then, though, they started coming up against these external barriers and uh rigid expectations for behavior and all sorts of things like that. Suddenly it was apparent that things were a little different at my house than I thought they were, and and and that maybe we were gonna have some struggles. And and then I started to worry. And that's also when I started to look back at my own childhood, and I started to have conversations with my parents, my own parents about my own childhood. So I don't know if you know this, but this book started as a series of essays, a column that I wrote for a literary magazine called Catapult. It has closed, but back in the um, gosh, before COVID, uh long time ago, uh now, I wrote a series of 10 or 12 essays for them. And I just needed a way to explore. I'm a writer, so I explore in writing, explore what it was I was experiencing and feeling. And so I was already writing in my notebook. I always have a journal about, you know, what I tell a story, always record. I have this way I do this. I record what happened because all I can do is just get the words down, especially when it's something so traumatic. When I see my kid being bullied by other kids or even a teacher, something like that, or a really traumatic parent teacher conference. I don't think I ever came out of a parent teacher conference when I wasn't in tears. Okay. It was just a I'm like, I was, you know, I it was horrible. They were always just so tough.

Kicked Off The Swim Team

SPEAKER_02 6:05

And so I just would write all these notes down. And eventually I sat down and said, What's going on here? And I started spotting patterns. And this is this this story is in an early chapter in the book, maybe the first chapter, when my youngest son was kicked off the neighborhood swim team because he wasn't following directions. But of course, the directions he wasn't following were so irrelevant to one's success on the neighborhood swim team as a six-year-old. Okay. They were so narrow-minded and rigid in these expectations, if that makes sense. Um, and and I just this is like so silly. And so, you know, I pay to be a member of this club, I pay for the swim team, and I'm like, well, why can't his older brother? This is my younger son, but his older brother is a little more, we will say compliant, but that's not necessarily a good thing, okay? And we can talk about that later. So the younger one, um, who is six, his brother was eight at the time. So his eight-year-old, he just wants to be on the swim team with his big brother. And I'm not sure if you've ever seen a bunch of six-year-olds in a pool, but they look like you know, you throw a bunch of puppies in a pool. Okay, they just are all it's just chaos everywhere, right? And that's I don't know, kind of part of the fun. Like, okay, we had to we here's this is the chaotic lane. Okay, this is the six like it's like four or five and six-year-olds, whatever. And and here I am. Okay, and so after his like second day, second full day on the swim team, they tell me he can't come back.

unknown 7:50

Oh my gosh.

SPEAKER_02 7:51

And they say, you know, no, he can't come back. He he requires too much individual attention. And this was the thing, my biggest discovery when I sat down and laid all these stories that I wrote side by side to write this book, which is the systematic exclusion of a neurodivergent kids from everyday life. And it is systematic, it is it is on an institutional and societal level, and it happens every day, and we don't even think twice about it. We think, of course, the six-year-old that this this one should not be allowed on the swim team and must take private lessons. He can't do tennis clinics, he must take private lessons. But I want, you know, we need to think about what that means, right? Who can afford all that? I can't afford all these private swim lessons. You know, I can't afford all these private tennis lessons. I mean, I couldn't then, I can now, somewhat, but it's like at the time, no, okay, that's what the swim team's for. You put it on the swim team, and it wasn't like he couldn't swim. He could swim, he met all the minimal criteria to be on a swim team. He had to be able to swim a lap unaided. You know what I said. I'm like, what did he do wrong? Well, he won't keep his goggles on. And I'm going, who gives a crap? You know, I don't care. I mean, what difference does it make? And this is where it comes down to why are we enforcing these irrelevant rules? And it's not just neurodivergent kids who suffer. It's any kid who thinks goggles are uncomfortable.

SPEAKER_05 9:38

Right.

SPEAKER_02 9:39

Whatever, right? And so so so who suffers when we enforce these uh irrelevant rules? The goggles, it doesn't matter. We didn't even have goggles when I was learning how to swim. Like they didn't even try to keep goggles on us when we were. I was on a swim team for 18 years. I was a very good swimmer.

SPEAKER_03 9:59

Oh, okay.

SPEAKER_02 10:00

I swam all I swim in high school, I was a swimmer, okay? And and like like goggles, like that wasn't even introduced to us until we were 10. Okay, that was not like they're like just don't even mess with goggles with these kids. Okay, it's a battle you don't want to fight. You know, we're like, there's water in my goggles, and so why, why? But yeah, no, the the reason I'm I'm asking, I'm thinking, gosh, he must have done something so horrible. He must be dunking the other kids or something, although that's very out of character for him. No, no, the goggles, he wouldn't keep his goggles on. And that was the problem. And so I was like, Oh, we're out. That's when I realized I was like, this is not a place where I want my child, right?

SPEAKER_01 10:47

Right.

SPEAKER_02 10:48

And and I had you, I had to make this tough call of do I fight for his right to be on the team where he is not wanted, or do I find a better place where he is? And this is a very tough decision, and and not a lot of people have the ability to choose. I'm I'm I'm lucky. I'm you know, I'm a two-income household. I have resources that most people don't have. We're able to pay for private swim lessons, and that's what we did.

SPEAKER_05 11:27

I was a swim coach. Oh, yeah, and I also was a swimmer. So, you know, this really broke my heart because really what was happening with him was I mean, he was just asking questions that honestly at six years old, a lot of kids would have been asking, you know, what lane am I in? Yeah, you know, what and and every single question that he had, like what stroke, and so what if he swam a different stroke than when he would, you know, was told to swim or whatever. I mean, it really didn't even matter. They just thought that his needs were just too great and he couldn't be on the team because he did those things. I mean, as a coach that coached all the way down to, you know, about six years old, I don't think I would have ever even considered having a kid be kicked off the team for something so small. My coach, actually, I remember this, would call me he would call me peanut head because every single time I hit the wall, he would say, What was your time? And I'd say, I don't know, because I couldn't read the clock. And so he would just say, You're a peanut head, you're a peanut head. So when I ended up winning in states, this one, you know, it was an age group team, but we our our team won. And um I went up and I put a bunch of peanuts in front of him. But you know, it's really funny because we hold on to those things, we remember those things, and and that's not okay that that happens. And you talk about choice, you know. I had to choose Special Olympics for my kids. My one son uh wanted to play flag football for a typical team forever, you know, and so we did, but he has very special needs, so he has a lot of differences. So, you know, the coach just actually grabbed him and picked him up and said, you know, be strong, be tough, quit crying, and that kind of stuff. Yeah, but that wasn't teaching him football or even how to fit in, it was just making him feel bad about himself. You know, his differences became the focus instead of helping him participate. Now, he plays special Olympics flag football and some other baseball and things like that, and he's happy, he's included, he's having fun, and really, you know, that's what it's all about. So

What Real Inclusion Looks Like

SPEAKER_05 13:50

when we use the word inclusion, what should inclusion actually look like?

SPEAKER_02 13:55

Yeah. Well, what it incredibly, you know, it's so easy because I've had models, his second, the same student uh kid, the second younger one, second grade teacher. I will never forget this. They had a you know, school assembly sort of little show they put on, and everybody had to wear uh this little metallic bow tie. But it was this scratchy material, and he didn't want to wear it. And she said, No problem, don't wear it. Okay, who cares? And so she was it was literally the only time I have ever walked out of a parent teacher conference without crying. She says, I love it and I I I love I love him. He's great, he's he's wonderful, and I'm like, nobody ever says this to me because everybody always has some complaint because he thinks the bow tie is scratchy, because the the line for the cafeteria is too loud because reasons, right? And what's hard is that both of my children are so they're so intelligent. We we did all the testing, all the testing, all the testing, and um which is a whole other story, like access to testing is so hard, so hard, right? And but that one teacher who stood out as someone very special, we never had anyone like her ever again for either kid. And so after that, when he entered third grade and the other one entered fifth grade, and both of those teachers were a disaster, we just said, you know, they don't need to be here. And it's not fair, and and listen, I I was a teacher, and uh and I my entire professor career was at public universities, okay? I taught at UNC Greensboro, which was a first generation college, and so as that was the student body that we serve, and then I taught at UNC Chapel Hill, which is of course our flagship, so much more high-level students, but it's it's still you know our state school. And so I I really believe in supporting our public education, and I know based on my research, how little support they actually receive. I I know teachers do not get paid enough. I know that exceptional children, what we call EC, exceptional children education, what your listeners might know as special education, but we say here. So what that EC educators really do not get enough support, they are super overburdened and super under-supported. It's it's wild, actually. Um, but I had a very close relationship with the EC teacher at their elementary school, and she was wonderful, and she really was wonderful, and so but in I said to her, I said, I feel like we're getting nowhere, and you're the only one who really cares. And she said, I understand why you're saying that, you know, she couldn't confirm or deny, but she says, I understand, you know, and so we pulled them out, and every year, you know, at any time, of course, they could go back to what we call we call it outside school, you know. But other people say normal school. And I'm like, oh no, that's not it. Now don't you don't you pull this normal crap on me, okay? Outside school. At any time I offer, I'm like, look, do you want to try uh outside school again? And they are like, no, why would we do that? And so uh that would be it's a terrible idea. And so, and what's so incredible is that they're taking my my the same kid who got kicked off the swim team is taking a college English 101 class this semester as a freshman. Um, and I can't express enough how much they're thriving outside of these institutional barriers that basically just got in their way. And there's no other way to put it than that. But there's so much focus on your kid is not standing in line properly, your kid is not using the right color pencil, your kid is not just it's like all these, you know. And so the way I describe this when I talk about it, when I give talks to groups like like schools, I say, you know, that what we have, and we don't even realize we're doing this. We have this. I'm holding up my hands for people who can't who aren't watching the video. I'm holding up my hands very close together, like to indicate like a path. Okay. We have this narrow path of acceptable behavior. And if we could just widen that path, I'm now widening my hands to expand what is acceptable. It is acceptable for a kid who finds that bow tie scratchy not to wear it. It's okay. What harm does it cause? And it is acceptable for my for a kid to use a pencil color that is pleasing. I don't know. I mean, I'm just I'm thinking of things that might, you know, why does every pencil color have to be the same color? What is it? What's the harm? You know, like what is what difference does it make? Unless there's a reason. Now sometimes there's a reason, and I understand that. But if there is no reason except it's just different, then maybe it doesn't matter. Maybe we can let them write with purple because they because the purple is pleasing to them. When they attended a school that had a uniform, everybody had to wear a belt. But see, my kids struggled because they had, I don't know if your readers understand your readers, your listeners understand how there can be um motor skill challenges when they're young with belts. Uh so thing, so so like buttoning shirts, uh things like that, tying shoes. So kids with autism sometimes develop later with that sort of thing. So my kids have slip-on shoes. I would put like lock laces on, like the kinds that you just uh I would take their the regular laces out, put the stretchy laces in. If I if I couldn't find shoes that were that came with stretchy laces, so you know, I'm not about to spend $200 on a pair of on clouds or whatever they're called for my you know middle school or whatever, but like you had to have black sneakers, black shoes. All black sneakers were allowed. But my kids need to be able to pull their shoes on. And so if I couldn't find all black sneakers, then I had to find late, I had to put in the special stretchy laces because they, you know, just tying shoes was extremely difficult. Now now they can tie their shoes. Eventually they would be able to tie their shoes, but we don't they don't have to tie their shoes now. See, this is the thing, you just have to have faith that they'll get there. And you know what? If they don't get there, there's gonna be a workaround. I'm wearing slip-on sketchers right now because you know what? They're awesome. Okay, it's great. So it it's a shift in mindset. What really matters and what norms are we going to enforce that really matter versus the ones that we're enforcing because we always have and we haven't

Advocacy When Professionals Dismiss You

SPEAKER_02 21:40

really thought about why?

SPEAKER_05 21:43

Yeah. You know, you're talking about systems that are so much bigger than us, so it's kind of hard. And you know, I recently had a meeting advocating for one of my kids because that's what I do all the time.

SPEAKER_00 21:56

All the time.

SPEAKER_05 21:57

All the time.

SPEAKER_00 21:58

All the time.

SPEAKER_05 21:59

But it It was with someone whose entire job, that's her job, is helping kids with differences. And she knew that I was neurodivergent. She was not new at the table. So we were having a discussion, and no matter what, she was talking over me, she was talking at me, she was talking too fast. And I said, Um, you're you're you're talking too fast. It's it's really hard for me to process everything. And she said, Um, you're not, I'm not talking too fast. You're processing too slow.

SPEAKER_02 22:34

Oh dear.

SPEAKER_05 22:36

And I went, okay, that's it. I want your supervisor involved. So I talked to her supervisor, and she actually came to my house in the next meeting because it was very needed. We needed to switch gears here, but what surprised me was how much it affected me. Suddenly, I wasn't just a mom advocating for her kid, I was advocating for myself. And fortunately, I'm not the kid that kid anymore that struggles to communicate anymore. I'm a big kid now. So, yeah, you know, so what I appreciated about your book is that we're not creating victims here. That's not the point. And we're creating advocates and self-advocates and people that can learn to stand up from themselves in these systems because they don't work for us. And I love that you're a voice for your own kids and so many others in your book. And when I talk about my own kids, like you said, I want them to be the heroes in the story. Because the problem isn't that our kids are hard. Parenting becomes hard when our kids continually enter environments that weren't built for them in mind, like you're saying. My life with three neurodivergent kids is appointments, evaluations, therapies, meetings, paperwork, advocacy, IEP meetings, just to get them what they need. And eventually I realize that no matter how much time we spend doing this, they still are trying to fit into these same systems that aren't made for them. So, how do we begin changing the system? Because systems, like I said, are just so much bigger than us. What have you learned about creating real change for neurodivergent kids and the families advocating for them?

SPEAKER_02 24:24

Well,

Small Scripts That Change Minds

SPEAKER_02 24:25

everybody has different skills. Okay, my skills are writing. So I'm constantly writing uh, well, the books. I have a I have a new book coming out in the spring called Neurodivergent and Expecting. I have a uh it with also with Hopkins. So it's like a partner book to this one. It's for neurodivergent people, adults, who are considering getting pregnant, who are pregnant, who are postpartum. It's for that journey, okay? And then a third book that's in its nascent stages that would you know round out this trilogy on neurodivergent parenthood itself, as a neurodivergent parent of whether your kids are neurotypical or neurodivergent themselves, okay. What it's like to be a neurodivergent parent and these struggles that you just mentioned, literally what you just talked about. And so what as like I'm a grown-up now, I can, I can, you know, yeah, I I got an accident flamethrower in the back of the car at all times. Okay. Because, for example, when we go to the doctor, okay, so we you and I talked beforehand that I'm I recently suffered a broken bone, right? And so I've had just so many doctor appointments that are it's like endless. And every time it seems like it's a new one, a new doctor, not someone who knows me. And the first thing I say is, I am autistic. And what that means is that when I that I I might not be displaying pain on my expression the way you would expect. Someone with this injury might be displaying pain. When I say I'm in pain and my affect is not, you know, it's a flat affect. That does not mean that I am not hurting. It just means that that is my affect. Okay. Um, you just I'm gonna need you to believe me. My words, listen to my words, don't try to just compare my body language to a neurotypical person's body language. I and I and so um I saw one doctor who started asking me about my psych psych psychiatric medication, like which was completely irrelevant to this appointment that I was having. And and I said, I, and it of course these appointments are now recorded with some AI recording software. And I said, Why are you asking me these questions? He said, Oh, I'm just doing a med check to make, you know, just making sure you're still on all these medications. I said, Oh, okay, but he stopped after the three psychiatric medications. I said, Well, why aren't you asking about my, you know, hormone replacement therapy on 50 this year, right? So why didn't you ask about the estradiol? And he goes, Oh, uh, I said, okay. I would like to, so this is so this is what I do. I would like to note that I am now concerned that I will receive below standard care because of my mental health issues, because you have just focused on my psychiatric medication. I am now concerned that I will be treated poorly because of that. And I I said, I want that to be recorded and noted. And he would his eyes got big. I was very calm. I did not sound angry, but I but I said, now look, if this doctor learned something from me saying that, great, that means that he'll treat people better in the future. If he didn't learn anything from set from me saying that, there's nothing I can do. But I go around all the time. Okay, and frequently what I have learned when I do, you know, have to straighten someone out. If it's a young person, I'm like, you know, and they're making some stupid joke, like, do you have the TISM? Something somebody has the TISM, and that's why they're like organizing that this okay, right.

SPEAKER_05 28:45

Okay, yeah.

SPEAKER_02 28:46

And and so I'm this happened. Uh and and the only good thing about the situation was that my child was not there uh to hear it. Uh and I said, So I have autism. Of course, they have no idea that actual people have autism around them, you know. And and they and they sort of had this panic, these are teenagers, they have this panicked look in their eye. And and uh I might have, because I did not yell at them, get angry, I just said, Hey, just so you know, I have autism. And I would rather you didn't say that. Just food for thought. And then, you know, I went, I left. Before I made it home, I had an apology, a text message apology that was so genuine and heartfelt. Um, and um and I showed it because I did tell my kid what happened once we were in the car, the older one. And I showed him the apology and I said, This is why I didn't get angry, and also this is why I said something in the first place. And I showed him the apology, and I said, Look at this. This is how you change the world in tiny increments because those tiny increments add up every interaction is an opportunity to make the world better. And so, look, you don't have to deal with the jackasses, okay? It's not that's not your job, but these kids were just just nobody had ever told them anything else any any how to be better, and so I could do that because, like you said, I'm a big girl now, okay. I can do that, it is not my teenager's job. He would just have felt really uncomfortable and and and like he was not wanted there, and that is not what I want for my kid, and so but I can do that, and you know, and so so there's these small moments like this doctors, you know, people I see socially, things like that, where maybe I need to write another, I have a column on psychology today. Write write a post about this, actually. I'm thinking just as we're chatting, I'm thinking about it like here's a here's a script you can use when you encounter somebody who says something offensive about neurodiversity, what you can say to help them do better instead of just shutting them down, which only just makes it worse. Because and and you can tell the difference. There are some people who are you're like, oh wow, this person uh you you just gotta write them off. They're not you're not gonna save this person, but this person, right? The the people I could sense these are these are like some 16-year-olds who just don't know any better. And so I and I and now they do because they know me, and they I would like to think respect me, you know, and and I see them all the time, and so you know, they're you know neighbors, okay, and so now they know they just I'm sure they just heard it, like maybe at summer camp and were just repeating some silly thing they heard at summer camp, but they didn't understand the damage that it caused. Now they do because I said so. I write, I write because I have a platform and I can do that.

unknown 32:10

Right.

SPEAKER_02 32:10

I give keynote talks where when when you know organizations bring me in either to talk about the your kid belongs here, like the parenting side of things, or higher ed, which is my other special area, how to make higher ed and education more inclusive, like truly more inclusive. But the you know, I have those platforms because that's my job, right? But what but not everybody has that. So if you're you're a nurse or if you're in the medical field at all in any fashion, you can educate yourself about how to make someone who's neurodivergent feel more comfortable in in your in your office. You can say something like, I see here that you are neurodivergent. Can I dim the lights for you? Like, is or is there any other way I can make this room more comfortable for you?

SPEAKER_05 33:05

Absolutely.

SPEAKER_02 33:06

Like be proactive instead of expecting someone to ask for it, because it can be really hard if you're a patient in a in a in a room to ask for something that feels extra because you're already so vulnerable as a patient. So instead, you can take that step and make make it a place, make it a space that is inclusive by you taking that step as the you know, the nurse or the tech or whoever it is that first brings the patient in, make the room uh a space, welcome them, truly welcome them into that space, just as they are. Because what does it what how hard is it to dim the lights? That that's a tiny thing, but it means the world to know that someone gives a crap about you. And so this is these small things add up because if you do that, then the person you work with, like the next at the next next uh you know, desk over, will see you do it. And they're like, What did you what was that about? And then you tell them, Well, oh yeah, I read this thing about how to help neurodivergent patients when they come in, and here you should read it, and then it spreads. All of these things, in my opinion, grassroots is how it

Rejection Hurts And The Three Questions

SPEAKER_02 34:35

goes. It is the best changes have always come from the bottom up.

SPEAKER_05 34:41

Well, you're talking about something that goes very deep because from the top, actually, when kids see parents acting like this, and you know, they're just taking on their belief system. So that's really sad. And that happened to you when you were four years old, and you were kicked out of preschool carpool. I mean, I am I cannot even really, I mean, I can't even believe that they wanted to kick you out of preschool carpool because you were a little loud, you talked too much, you didn't, you know, you didn't stand quietly or whatever it was. I mean, it wasn't really even anything that major, but I mean, when adults take on those beliefs, then it does get passed down, and it was devastating to your mom, by the way, who then took you to a psychiatrist because she wanted to know what's wrong, you know. And but what I loved was that the psychiatrist asked three questions. Were you hurting anyone? Were you hurting yourself? Were you damaging anything? And the answer to all three, of course, was no. So, you know, why are we treating you and kids like this? Like they're terrible. And maybe you did do these things, but it was no reason to get kicked out of carpool or that they wanted you to. But there's something deeper here because kids do notice when they're being rejected for simply being who they are, and they start hearing, you're too loud, you're too emotional, you're too difficult, you're too much. What does repeated rejection like that do to a child, especially when they begin to believe that who they naturally are is a problem?

SPEAKER_02 36:30

Right. I've been told, and I'm sure you have too, that I mean, too much. I should just get a t-shirt that says too much on it and warn everybody in advance, okay? Because I apparent, I mean, you don't know this about me, but I'm also 5'11. So I am really tall and too. I mean, talk about I'm just already too much. I was born too much. I was 10 pounds, okay. I came out, I came out at like nine pounds, nine and a half, whatever, 10 pounds, 5'11 now, just too much all around, right? And uh, you know, so we're already starting at the too much, just basically. And then you add to that, you know, neuro neurodiversity, the the I have Audi HD. So it turns out I was actually when during that I was interviewing my mom, you know, for the book at one point, and she said, Oh, yeah, so you were actually diagnosed with ADHD in first grade. So the same psychiatrist. So to go back to what you said before, yes, I was I was kicked out of preschool carpool, and that's the first time she discovered this child psychiatrist who I mean, I have loved this woman forever, you know. Just I think that she probably saved my life. She probably saved my parents' lives. And those three touchstone questions, I still use them now. Like when when my son was kicked out of like when my so when my son was kicked out of the swim team, I called my mom on the phone and I said, tell me the carpool story again. That is the first thing I did. Because I also wanted to know, did you tell me? And she goes, Not till you were a teenager. And you thought it was funny, but she it was never funny to her. It still isn't, even though she's 78 years old, it's not funny. There is still a place inside of her where that hurts so deeply because having your child rejected is excruciating. There's nothing funny about it, right?

SPEAKER_03 38:34

Right.

SPEAKER_02 38:34

Um, but I thought it was hilarious. I was like, you mean because I knew who they were. I said, Oh God, those people, you know, why did you want to be around them anyway? They're the worst. And so, of course, what the what the psychiatrist said was, you know, I did some research. I'm like, what are these three questions? And what the questions are is is actually at the time and kind of still is, is a is this it's a it's a behavioral diagnosis, but it's sort of sort of based on this. I can't remember the name of it because it's doesn't exist anymore. But basically, did she put herself in danger? So, like, was I running around the parking lot, which I wasn't? Okay. And it was I harming the other kids. So, like, was my son dunking the other children? I remember I thought that. Oh gosh, was he dunking the other kids?

SPEAKER_03 39:22

No.

SPEAKER_02 39:23

Okay. Was he did he run out of the pool area? No, you know, um, and then did he damage property? Was he like, I don't know, I don't know how you damage property at the pool, but somehow, was he somehow like damaging property at the pool? And no, okay, and now that's pretty broad, okay. We talk about the narrow, but I'm holding my hands up again for listeners, that narrow, narrow rules of of behavior, and then we widen it, okay. Um, now we could widen it all the way to those three things because if you just look at those three things, harming others, putting putting yourself in danger, putting others in danger, and damaging property, and then just sort of work backwards from there to like, okay, what really needs to happen here? What's really necessary? You know, um, but we definitely can't have those things, right? I we're I think we're pretty much all agreed. The kid can't put you know himself in danger. That's I agree. I think that's true. Okay, so let's we're gonna narrow it from there. It better be really important because as the more you narrow that band of acceptable behavior, that path, the more kids are going to be excluded. So that you have to have some super good reasons for doing that. And if the if the and so I was I mentioned the belt thing, having the that a belt was required as part of this uniform, and also that the pants could not have an elastic waist. So that this so they had to wear navy blue pants with a belt, no elastic. Well, let me tell you, kids were paying their pants, not just mine, because they couldn't get the belt undone and then the button undone and the zipper. I mean, it's like hard. We're talking about kindergartners, kindergartners who are barely out of diapers and pull-ups, right? Are are are unable to get to the bathroom in time, get all this hoopla undone, and so kids are wetting their pants. But the people who are wetting their pants

Uniform Rules And The Myth Your Kid Is The Problem

SPEAKER_02 41:25

more are the ones who have later developmental, what am I trying to say, the skills with their fingers? Uh find motor. Fine motor skills, exactly. And so, which tend to be neurodivergent kids. I mean, I could go in and argue my face to my face was blue. I'm like, my kids need to have to be able to be allowed to wear elastic waist pants, nice dress pants, but with an elastic waist, they make them for children and no belt because otherwise I'm gonna have to be bringing clean pants every day. This is gonna keep happening. And they said no. And I said, Okay, goodbye. And we're gonna change schools because this is crazy. I mean, it just why? Why? See, this is the narrow, it's so narrow and with no good reason. And I will tell you, they have a new principle, and that is no longer the rule. They changed.

SPEAKER_05 42:16

Okay. I mean, all right.

SPEAKER_02 42:18

I mean, I don't know if I had anything to do with it, but it was silly. It was a such a silly thing to enforce on the on these little kids. If they're not, they're not fifth graders, but like sure, have a have middle schoolers wear belts, but like like elementary school kids, who cares? Oh my gosh, who cares? And so it just doesn't matter. Does the belt matter that much? No, and this is where you have to sit down and think. Because I will tell you, as a parent, if you are listening to this and you are early in your parenting journey of your neurodivergent children, they can really make you think that all of this is your fault. They really can. And you'll your kid is the one who can't wear a belt, while every other kid at the school can. And I can tell you right now, that is not true. Okay. And it is just, it just is not. And they'll make you feel like your kid is the problem, and your kid is not the problem. That is not true. Okay, it is not true. You have to you have to work on that. You might, I okay, it's not this is not a mic. I would highly recommend that you yourself go to counseling and and work on that for yourself, so to get your perspective straight so that you can help your kids best. Because it is so hard to help your children when you have all this pressure on you to make them conform to these ridiculous expectations, because so many of them, I would argue most, they are ridiculous. Okay, they just are. And the advice, of course. That my the psych the psychiatrist gave my mom after I was kicked out of carpool was find better people to carpool with. It wasn't try to change me to make me acceptable to these carpool moms. No, not that at all. She said they're wrong. Your kid is fine. But she couldn't get there on her own. She needed this doctor to tell her that I was not the problem. You have to have someone else. You're gonna need that outside voice, an expert, someone who knows what they're talking about to tell you it's not your kid. And you know what? The person she found to carpool with has was one of her best remains, one of her best friends for 40 years. It's amazing. So they they became really good friends. It's it's it's remarkable because she also felt like an outsider. She was a single mom, you know, her husband left her, all these things. She had nobody to she had she had no carpool. Single mom with no carpool, it was kismet. And and and it turned out to this to be this wonderful thing. And they and they had a glorious friendship because I was kicked out of carpool, and my mom found they found and they found each other. But it can seem like the end of the world, even the smallest things can feel like my child is

A School Moment Kids Never Forget

SPEAKER_02 45:25

defective and I don't know what to do, and it's a horrible feeling.

SPEAKER_05 45:29

You feel like you're on an island. I mean, I had my son who I homeschool, yes, um, he is 10 and he's in fourth grade. And in when he was in first grade, and he loved school. I mean, the principal called him the mayor of the school because he was so jolly. He just said hi to everybody, and he made sure that he made connections with people, and he is autistic, and but he was the cutest thing, and he couldn't wait to get to school every day until they had a lockdown drill, and he was hiding under the desk, like they were all supposed to be like, and there was one kid on one side of the desk, and another, and he was on the other, and there was a little hole they could see each other. So the one started laughing, and my son started laughing, and it became this thing. And the teacher said, Shh, you have to be quiet, right? And then my son, you know, it happened again. Well, they had this thing where they earned bucks in the class, they earned dollars for being good, and he was saving his, ironically, because he had really quite a bit of money that he had saved up to go to lunch with his teacher. That's what you could do. One of the things if you earn if you save this much money, he had a lot. She was done telling him to get you know, to quit laughing during the line, and they were snickering softly. She even admitted it it wasn't that loud. Well, so she said um to him, get over here, and he did, and he she said, empty your wallet. No, give me everything that you have earned, no, and he had to give it to her. Oh it was heartbreaking. We went to the system, the school, because she refused, he would not go back, and he was humiliated, it was in front of his class too, and so you know, we we went to the school because the one person, one of the student services people came and said, I don't know why your son feels like school is an option, and I went, Really? Really? And I and I do have to say, this is a moment in time I love our school district, and overall, I love it, and I want to say that. But this did happen, and so my son, we went and we said, All we wanted, he she doesn't even have to apologize, all she we would like is for her to acknowledge and say, I am sorry that I made you feel this way. She wouldn't do it. Oh so then, okay, he won't go back to that school, so then we go to another elementary school within our district.

SPEAKER_02 48:28

Didn't feel comfortable safer going back to that school, no, not at all.

SPEAKER_05 48:33

And the principal stood up for the teacher, so we were done. We were done. So then we go to another elementary school within our district, and he happened to see me when I was dropping something off, and he had separation anxiety very big. And I he saw me, he clung to me. The teacher, the principal said, Hey, come on in here. You know how you like to play with this thing in my office? Well, it's in there and you can play with it. And so he ran in there so I could leave. And she like waved me to leave, and I did, only to find out that that thing wasn't in her office.

SPEAKER_02 49:07

Was it legal lie?

SPEAKER_05 49:09

It was a lie. Oh, it was a lie.

SPEAKER_02 49:14

You don't lie, you cannot lie to an autistic child, man. You can't do that.

SPEAKER_05 49:18

You shouldn't lie to any child, but but the by that time he said, Mama, I'm not going back. And I said, Okay, we are not going back, we're going to school you at home. And there was a time where I even said to him, like a couple years later, because he's, you know, it's three years now, and I said to him, Would you even consider going back? And he got teary. I mean, he actually started to cry. So they remember and they it goes to the very core, and he still tells a story like it happened yesterday. And I guarantee that he will tell it till the day he dies,

Uneven Development And The Cost Of Masking

SPEAKER_05 50:00

how much it hurt him.

SPEAKER_02 50:02

Well, I mean, you we, I think, as a society, underestimate children, period. We underestimate how deeply they feel things. We underestimate how how long they remember things. We underestimate how it's not about maturity. It's about because they're not mature. They are children, but it's about I they we do underestimate how I don't have a better word, how mature their reasoning is and their feelings are. We see them as it's like they go from they're either uh uh like a baby until they're an adult. Okay, there and there's no in between. Uh and I do think that our children deserve a lot more. I I don't know why this is, I can't tell you why I did this, but I always have always have spoken to my children like they were like I'm talking to you right now. And I I'm certain that if anybody came in my house and my kids were two and three or three and four, they are extraordinarily close together in age. Um, they would have thought it was weird that I was like I would be on the phone with somebody and say, Oh, hold on, and then say, Hey, can you um grab those Legos and just move them from there to over there so I don't step on them with my bare feet and start crying? And then I'm talking to my two-year-old. Okay, that is how I would talk to them. But it never occurred to me to talk to them any other way because I don't that's how that's the vibe they gave me. So even though they couldn't talk to me that way because they were two, okay, that is how I spoke to them and they responded in kind, like in their way. It was how I always spoke to them. And so as they gained the ability to talk more, you know, lucidly, they they were speaking as though they were like adults, especially. It was a little yeah, so like so like in very complete sentences and very because that's what they heard. They never heard baby talk. That wasn't how I ever spoke to my children. And and so now that is my own strange thing, because of course, one of the things that comes rides along with autism is failure to follow social norms. And so that was a failure on my part to follow a social norm. But what it ended up doing was being great for my children. They so they when they went to school and they would try to explain things to their teachers, their teachers would would have these super high expectations of them that they would be able to do all these things, like tie their shoes or under their belts and time to pee, but they couldn't. And and one way that uh a person I interviewed explained this to me was that kids mature in different ways and different speeds. So we have our social right. So you have your your physical maturity, your social maturity, and your intellectual maturity. So so a kid could be physically. My my 15-year-old is six foot two. Okay. He is so tall. And so, but he is in his intellectual maturity, like where he is as far as like he's like I said, he's taking college classes, he's just beyond, okay, with his intellectual maturity. But his social maturity, you know, I don't know, he's probably chilling at like seventh grade, you know. Um like of my nieces and nephews, um, my 12-year-old niece is the one he probably is closest to.

SPEAKER_03 53:46

Okay.

SPEAKER_02 53:46

Um, which you know makes sense. Um and he, you know, he likes hanging out with younger kids. And and that is fine. He, however, does have very interesting conversations with adults, but that's a different thing. It's a different thing. Like when when he talks to but when we're talking about peers, he definitely peers his peers are go downward in age, okay. Because his social maturity is a little bit behind. Now it will catch up, but just I just need to know that. So he looks like the six foot two man, okay. And then unless you sort of look at his face and notice that he's got braces and he's you know, he's like not a man, and and so I worry about him. So, like he likes to take walks. He has so many ideas in his head, and he's gotta, and so he works through them by talking and I am waiting for our bananas, neighborhood lists sir, someone to post. There's a strange man walking around the neighborhood talking to himself. I called 911. I'm waiting for that to get posted. I worry that someone will see him, will think he's like having a uh uh psychotic break or something, talking to himself. And so I bought him a headset that he wears, like because he doesn't want to wear his big noise-canceling headphones on a walk. It's like a hundred degrees outside. I get that. Like so I got him like a little headset, like you're not like like AirPods, but not AirPods, basically, um, that he finds comfortable. I said, don't even turn them on. But people take walks and talk on the phone. So then this way people think you're talking on the phone.

SPEAKER_01 55:29

Right.

SPEAKER_02 55:30

Okay, so that's me having to like trick the world so that they don't call the cops on my autistic kid while he's trying to figure out how to get us to Mars. Because believe me, if we're gonna get to Mars, my kid's gonna get us there. All right, because his intellectual maturity is sky high. But his social maturity, I had to sit down and explain this to him, and he still doesn't quite he doesn't, he's like, Why? Why does anybody care? And I'm like, dude, it's stupid, okay? Just just recognize that it's stupid and there I know that it's stupid, and please do this for me because I love you. And and he's so he does, and he just I'm like, they don't even have to work. I'm like, give me your broken headphones, neighbors, I'll take them all. Okay, and he'll just put a little earbud in his ear, and then he has an excuse to be talking, but that's how much I worry.

SPEAKER_05 56:23

You you just touched on something though with masking, you know. I mean, that's what we we we mask, we've been taught to mask and to mask and to fit in and all of that. But you know, what kind of damage does that uh do for kids to be taught, you know, you have to appear different than who you are. So this is how I want you to look and act. I mean, after a while, I mean, I think that that does have it has some psychological damage.

SPEAKER_02 56:51

Absolutely. And so at my house, which we call it social acting, um, because I'm very conscious about masking. I was a heavy masker. I mean, I could I was socially incompetent. No one ever taught me or helped me. I was only yelled at for being bad at it. That's all I was ever taught about how to how to do better socially, was just lots of yelling. Okay. And the thing is, is that I do believe that my parents did the very, very best that they could with the tools that they had. And so I'm sure now if they were in at this in this day and age, when we know the things we know now, they that they would be getting me the help that I get my children. And so every week we have a counselor that they talk to. They have been talking to this person since they were diagnosed when they were six years old. Okay. Okay, okay. I highly recommend that if you find someone your insurance covers and they just need an adult to talk to who isn't you. It

Sponsor Spotlight And Quills Up

SPEAKER_02 57:58

is so helpful.

SPEAKER_05 57:59

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