Our Kids Belong Here: A Conversation for Families and the Systems That Serve Neurodivergent Kids | Part 2

Welcome Back And The Big Question

SPEAKER_00 0:22

Welcome to Real Talk with Tina and Anne. I am Anne, and today we have part two with Katie Pryal. What happens when we stop expecting neurodivergent children to fit into a world that wasn't designed for them? In part two of our conversation, we continue exploring her book, Our Kids Belong Here, and the importance of understanding, accommodating, and advocating for neurodivergent children. Katie and Ann both talk about their personal experiences as neurodivergent mothers, raising neurodivergent kids. We discuss misunderstood behaviors, the challenges within our education system, and why providing accommodations doesn't mean lowering expectations. At the heart of this conversation, we realize how we can help our kids stay in the realm. Here is part two. You just

Masking, Social Acting, And Its Cost

SPEAKER_00 1:12

touched on something though with masking. You know, I mean, that's what 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 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_04 1:39

Absolutely. And so we call it social acting at my house because I'm very conscious about masking. I was a heavy masker. 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 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 is so helpful. Okay. And and they each, I taught I said when they were younger before they had iPhones, they have journals. I taught them, we call them Da Vinci Notebooks. I love this because we watched a special on the notebooks of Leonardo da Vinci on Nova. And this is this is homeschool 101, right? Nova is the best. So like they each have, I get them these drawing notebooks, but they also write in them. So they have their sketches and their designs and that for their like 3D printing, all this stuff. It's amazing. They're amazing. And um, but also they will have a page with like running notes for to talk about with their counselor, something that was challenging or upsetting, or like, is this I don't know how to solve this thing, it keeps keeps coming up as a problem. What do I do? So they have this, you know, this great person who really, I mean, we have been with this person for over a decade now. It's amazing. And she has helped our family so much. I strongly recommend this. And even if it seems like nothing's going on, it is okay, so much. And so just having that person to talk to beyond you about things that are challenging. And then, because sometimes what's challenging is you. And so then they can, and this person can I, you know, I'm frequently asked to join in towards the end and say, you know, he didn't know how to talk to you about this. So, you know, now, now I'm here and we're gonna talk about it together. And I I didn't, I had no idea that I was causing this pain that I was causing. And now I I I'm so grateful that their counselor was able to, you know, mediate this for us. It's amazing.

SPEAKER_03 4:20

It's so helpful.

SPEAKER_04 4:22

And so, yes, I cannot, I cannot say enough about how important that is. And she takes our insurance, it's a $30 copay, it's worth every penny. And so it's I will say it is extremely extremely difficult to find people that take your insurance, though. And that is one of the my biggest grievances about our our society is the lack of mental health care generally, and the lack of mental health care that is covered by insurance, because the reimbursements by insurance is so crappy for mental health care providers. And it it that they can't afford it. They can't afford to do their jobs. And again, this is a systemic problem because our children would benefit so much from this. But I happen to live, I live in Chapel Hill, North Carolina, and I'm not sure how how well you know what this means. That means that I have Duke Medical Center and Chapel

Counseling, Journals, And Mental Health Access

SPEAKER_04 5:20

Hill Medical Center all within like 15 minutes of my house. Huge medical centers. And then, of course, when you have medical centers like that, you attract even more. Okay. So then we have all of the supporting clinics and everything like that, people who are around. So I have we have medical care out the wazoo here. We have an entire autism center that attached to UNC Chapel Hill, and that's where I was diagnosed with autism, is that they do adult diagnoses and it's covered by insurance.

SPEAKER_03 5:58

It's it's unreal.

SPEAKER_00 5:59

That's that's awesome.

SPEAKER_04 6:00

I know it, but it's most people that's just not a thing. So all I'm saying is that it is diagnoses are an official diagnosis, is nice to have as an adult. But if you are an adult and you suspect that you have autism, there are resources on the web. And I believe a self-diagnosis is a valid way because it is so hard to get a diagnosis as an adult.

unknown 6:25

Yeah.

SPEAKER_04 6:25

Because so many providers only only treat children and and they only test children because it's a developmental disorder. Developmental. Okay. And so uh that means that if you're an adult, then they don't really know how to do do a diagnosis of you as an adult, which is puts up so many barriers for us. Um, so I'm one of the lucky few who was able to get a diagnosis as an adult that was covered by insurance. That's just so rare.

Autism Looks Different On Everyone

SPEAKER_00 6:55

Yeah, I want to circle back around to something that you did talk about and like the splinter skills and how different kids are with and uh just people in general that are neurodivergent. And you can have the same diagnosis and completely look different. And you know, I think that even with TV, um, and you've talked about this in your book too, that with the way that they make autistic people look on TV or what you know, and then you say, Oh, well, I'm autistic, and they're like, Well, you don't look autistic. There is no picture next to the word autism in a in a DSM or anything. You know, we just are. And your neurodivergent wheel was really good. I mean, I love that you're it's it's not, we don't all look the same, and it's not linear and it's not a a line spectrum. I mean, you talked about a wheel.

SPEAKER_04 7:54

Yes. I know I did not invent the wheel, just want to make sure that's very clear. But the wheel as a visualization versus a spectrum as a visualization, because the spectrum visualization implies worse and less worse or something, higher support needs, which is how we uh how we talk about it, right? So, like who uh higher support needs versus lower support needs. But the other thing that's confusing about the support needs thing is that someone can appear like they are low support needs, autistic or whatever, and actually not be again on the surface. They can appear that way because of masking, because of reasons, whatever. Um I don't I would consider myself medium support needs, not low support needs. And I if I would if I told someone that, they would be surprised. They're like, well, you get so much done, you write books, you do these things, but I have to have so many things in place. I I just have built my world around myself. Like I said, I'm 50, so I've had some time to do this, to to create a life around myself where all of my needs are met.

SPEAKER_00 9:06

You and me are the same person.

SPEAKER_04 9:09

Well, that's great. We should hang out more.

SPEAKER_00 9:12

I I I understand everything that you're saying. I can't even get through my day unless I have I have so many helps. I have external brains, I have, you know, so I I people say the same thing about me.

SPEAKER_03 9:29

And oh, you're so fine.

SPEAKER_00 9:31

I could not get any of these things done if I didn't have anything, all all of these things in place. Right. It is it is so important. And also, if I do something, it could take me hours to do versus somebody taking, you know, 15 minutes to do. I mean, it it's just they don't see everything that goes on behind the scenes to get it done.

SPEAKER_04 9:54

Oh, it's a metaphorical duck gliding across the water with the feet going blah blah blah blah underneath. And and so uh and so so this goes back to masking, right? And

The Hidden Work Behind Coping

SPEAKER_04 10:07

so and so at my house we call it social acting. And I tell my kids how you are right now is perfect, change nothing. So here's how here's the deal. The outside world, not the whole thing, but a lot sometimes, can suck. Okay. So, son, younger son, you like to walk and talk and build your ideas. Great, don't stop. I literally d never try to stop him from doing this. I think it's great. I walk and talk and do my ideas. I actually dictate into my phone. So I have a headset on, I have my phone, and everybody just thinks I'm talking on the phone. And I dictate my ideas into my telephone. And and then it it I have a recording software, a dictation software that it dictates I dictate into and I get stuck, you know. Um, one of the bummers about not being able to walk because of my injury is I've been stymied with all of these writing assignments because the way I write a lot of first drafts is I go for just a 10-minute walk and I can come back with 2,000 words on that after that 10-minute walk. It is a it is how my brain works. But, you know, I'm healing. But again, that's a system that broke down. And so the system breaks down, the whole thing comes for each. Oh my gosh. In fact, the reason I got tested in first grade was because I would line up my crayons in a very particular way. And then like kids would come over and screw with like screw them up on purpose just to upset me. And the teacher thought that I was, you know, so basically it was bullying. And the teacher said that I would just get so upset about my crayons, and these are like crayons I brought from home because I needed my own crayons, because I kept my crayons so perfect, and I drew with them and I drew, you know, and I whatever. I got then the same psychiatrist tested me and I got and I was diagnosed with ADD, which was what it was called then, ADD hyperactive type in first grade. That would have been 1981, I think. Um so a girl, like me, was diagnosed with ADD hyperactive type in 1981. So I don't know if any girl was ever diagnosed with AD ADHD in 1980.

SPEAKER_03 12:30

Yeah.

SPEAKER_04 12:31

So I but then what the the so first of all, it's pretty incredible that I was that I was diagnosed at all with anything. But second of all, in the most Gen X thing I've ever heard in my life, my parents didn't tell me. I didn't find out about this diagnosis until I was interviewing my mom for this book. She's like, Oh yeah, yeah, you were diagnosed with ADD when you were in first grade. I was like, what? What? And so like that would have been nice to know, right? Yeah. How about how about in middle school? How about in high school or college or law school? Oh my gosh. Law school, my ability to focus in law school was non-existent. Okay. It was so hard. And I was like, you know, I have a a cousin who who got diagnosed recently. He's a he's a boy and he was diagnosed with with with it and I don't know, he's probably 38 when he was diagnosed. He said, I can't believe how hard my life was until now. My life has completely changed. And and because he has a little bit of medication that he takes every day, and he's like, I can sit down and work. Period, the end. And I'm like, because before that he couldn't. And I'm like, I know. And so, yes, you know, I can hyper focus, yes, all the things that are, but at the same time, my my like ability that that that get started itis, you can't get started. Oh God, it was horrible. It's been so horrible my whole life. And like my working memory stinks and processing speed and all the things, right? It's yeah, but like to not even tell me, like, why didn't they tell me? How about tell me when I'm 20? You know?

SPEAKER_02 14:15

Yeah.

SPEAKER_04 14:15

I mean, it's just so hilarious. It I find that the most hilarious thing in the world. It's like maybe they thought the hose water that we drank would have cured it or something. I have no idea. But okay, so so that's so I actually am Audi HD. This is the a lot of masking. It was just a whole lot of masking my entire life. And I did not want my kids to go through that. And so I but so for example, with with my son who's 15, I said, you do not have to stop your walking and talking. And I think that's just fine. I do it too. I want you to be safe. So I want you to wear this with this earbud, and here's why. And so we call it social acting because it's not about changing who they are. I like that. It's not about that. It's about tricking the world until we can get home. It's like playing a trick. We're we're we're tricking everybody else. So it's not it's not about too many times the masking is about this idea that you as you are aren't good enough. So you wear a mask to appear more neurotypical and because who you are as a person underneath that mask isn't good enough. Okay, that's not what social acting is. Social acting is I'm perfect just how I am. Y'all aren't, so I'm gonna wear an earbud. Okay. And that is a completely flipping it on its head.

SPEAKER_00 15:40

I like that. I I probably will use that with my kids. I like that

Testing, Grades, And Narrow Definitions

SPEAKER_00 15:44

a lot. Um, there's another measurement that we do, and you know, with intelligence by a person's ability to perform inside a system that specifically hits their area of difference. And, you know, it it really they don't take that into consideration when they do all the tests and different things in the schools, and it makes it really difficult for them to test well. And I have a very highly, I mean, my I would consider my one son that I homeschool gifted, but he doesn't test well because of these very things and the scores that he gets makes, you know, if and my one kid who is in a special school for kids with needs, we got rid of the the grading. And and that was my request because he would come home with him ripped up and in a ball, and he was so upset, and he would just say how dumb he was. And that was not okay with me. Um, because the way that we test a lot of times in these environments, it just simply isn't showing what they know, because the environment itself is the problem sometimes, too. And you kind of touch on that where they have all these noises and sounds and all these like distractions and things that are going on around them, and the environment actually is causing some other problems where you know, even if they do go in with possibly ready to take the test, and maybe they can't because it really just isn't how they show their intelligence. Um, but it makes it even harder sometimes in the education system because of just how it's set up.

SPEAKER_04 17:27

I I never tested well. I never made stellar SAT scores or Jerry's or LSATs. That wasn't ever a thing I ever did well. And I would say that there was a period of time, I think mostly in law school, where I felt like, you know, I'm so stupid. Uh, of all the things, of all the things that I do have, you know, my intelligence is not the thing that I should be, you know, worried about. It's not, it's that's just not it, right? Um and so, but it's just so easy to fall into that self-doubt when the standard of measurement is so regimented. And here we're right back at that, I'm holding my hands up again, that narrow road of what counts as as normal, you know, what counts as intelligent. It's very narrow. It basically means how well you score on whatever. Okay. And if you don't score well on whatever it is, the end-of-year grading tests, EOGs, what we call them here in North Carolina, or if you don't SATs or this and that, okay, if you don't, you know, max those out, if you don't go to Harvard, if you don't go to the if you if you do some non-traditional stuff. So here's the thing I have in my corner, and I will tell you this is that I was a college professor full-time for many years and and still an adjunct, I still teach. And I hate grading. I think grades are anathema to learning. I am absolutely against grades, and I really will only teach classes that are passfail, or while I ha or where I have complete control over the grades. You know, so in a law school, there is a forced curve. So, in other words, in every class, you're only allowed to give so many A's, so many Bs, so many C's, whatever. So if you're an excellent teacher, like I was, and your students all learn the material really well, like-minded, some of them are required to make poor grades. And I'm like, no more. I refuse to do this anymore. And so, you know, they know that if I come and teach there now, and so there is a this is not new, there is a large movement among college professors to just get rid of grades altogether. There's just fail, right? That's fine. There's nothing wrong with that. And and and there's other ways, alternative ways of grading. And uh, if you want to add this to the show notes, um one person who's leading the charge, whom I respect very much, is Joshua Eiler, E Y L E R, who recently wrote a grade book about why we should just get rid of grading. Just we don't need them. Grades don't grades do not reflect. Grades are not for the students. Grades are not for helping students learn. Grades are for weeding students out. So what grades do is so like in college, grades are to tell medical schools which which students to admit and to tell um, you know, like investment banks which students to hire. Grades are not for the students. So what who are we serving? My job as a professor is not to serve uh Goldman Sachs. My job as a professor is to serve my students, okay? Goldman Sachs can just conduct good interviews, they can do whatever they want. If they want to give a little test to the students and get and see how they do, if they want to do that on their own, that's fine. But that's not what I'm gonna do. And so grades are how are purely a service for like your class ranking, you know, who's validatory and all this. That's a service for outsiders who are looking in on the students to determine who they should accept higher and so forth.

SPEAKER_03 21:31

Right.

SPEAKER_04 21:31

And all they do, like and what I have in my research on this subject is is that which is in my like mental health and higher ed book, is even the students who are making the best grades in in law schools, for example, the ones where these grade, these forced curves, every class, every single class. So it's not like these are like the big science classes in undergrad, like the pre med classes where they have these curves if you remember this. I never took any of those classes because no. I'm not a science person, but every class in law school is like that. So not just like the first year classes or whatever, but every class. So the entire thing is this big curve, forced bell curve. So no matter how well you learn the material, it's not about how well you learned the material. It doesn't matter. It's about how poorly everyone else did. And it's that's how has that anything to do with learning? It's terrible. And so what we learned in researching the mental health of law students, which is, by the way, really bad, is that students who have who are at the top of the class have their mental health is the poorest. It's like the pe the kids who are like hovering around like a B plus or so average are actually sort of fine. But the kids stop because they're in a constant fear of falling. This is constant pressure. And I'm like, why are we doing this to these students? It's so unnecessary. So another reason I pulled my kids out of school was that they never make good grades ever.

Homeschooling And Executive Function Supports

SPEAKER_04 23:09

It never reflected what my kids were actually capable of doing. And then once so, what we we do have as part of their homeschool is I have a study skills tutor. She's wonderful. And so she helps with things like they have a planner, teaching them how to use a planner. This is this is literally executive functioning stuff. Helping my kids like they so that she is like their EF tutor. So how to read a syllabus, you know, print it out and use a highlighter and figure out and then put the deadlights in your planner and that sort of thing. And this is what we started doing as they started taking more classes, like we have this online accredited passfail high school high school that we take classes with, love them, and then also with like the local community college, and then a couple of other sort of we sort of patchwork some things together. And and so things got more serious, and it's like, okay, we need to learn how to just you know sort of tighten up these executive functioning skills and and plan our day and and like and and she's been great. Uh and I am lucky that I was able to get like because if your kid does have a diagnosis in North Carolina, you can get a minimal amount of some state funds for your kids who have an autism diagnosis that you can use. It's it's like a voucher, but but it's not a it's not like just a voucher, it's for a dis for disabled kids, okay? And I can use that money to pay for this because she's kind of like an occupational therapist slash tutor slash, it's all the sort of that, okay? So it's sort of like OT, but an academic occupational therapist, if that makes any sense. And so she's been a huge help with homeschooling. And my kids see her three times a week and they review all the stuff with her, and it's been great. She's been great. So homeschooling was one of the best things we ever decided to do, and we've only ever kept it as low-key as we possibly can, because my kids are gonna learn no matter what I do.

SPEAKER_00 25:23

Right, right, exactly. We all end up in the same place, really. And that you know, I mean, your son's story really hit me because uh he had severe reading struggles, but because he wasn't failing badly enough, the school essentially decided that he was doing okay, you know, and that really hurts our kids that really learn how to make these workarounds and they're really, really struggling. But you said that the report card was hiding his disability. And, you know, I mean, that's just so true. Are we looking at the wrong measures when determining whether a neurodivergent child needs support?

SPEAKER_04 26:04

Yeah.

IEP Power Moves And Bringing Advocates

SPEAKER_04 26:05

Yeah, so that's the older one. The older one has also dyslexia. So they both have ADHD, and the older one also has this dyslexia, and I had to go to an outside language, speech and language pathologist to teach him how this is how to read. Like literally could not read. I now in retrospect realize did not handle that legally. But I it was my first like IEP-ish meeting, so I didn't know anything. Um this is more advice I can give you is that learn about IEPs, learn about what they do, how to what the rules are, what the school's required to do. It's pretty uniform from state to state, but learn about it. And it'll be on your state's education website. You know, it'll the information's there at how to call a meeting, you know.

SPEAKER_00 26:54

And most parents don't realize that they do have a seat at the table and that they have a say, you know, and that their say matters and that they don't have to sign the form if they don't agree. Because if they just put it in front of you and say, we need you to sign this, and this is what needs to go on the category. No, we're not gonna put autism there or whatever it is, because this is what we see. Uh you don't have to sign, and also you have the right to an advocate. And I think that that's really important because people don't realize that they can bring somebody else in with them that does understand because I can remember my first IEP meeting and I went in there, and there's like at least five people from the system that are looking at you as the parent. And I'm also, you know, I'm neurodivergent and I don't do well in closed spaces. Uh actually, now we've gone to complete virtual, and that has helped me out tremendously that I can now think. But when they get you in a box and they're all surrounded around you and they're telling you what you need to do, I I took people in with me at my external brains for them to be able to say and do, and they're all in the education system, so it really helped me to have people in the room that understood the language because it's a different language.

SPEAKER_03 28:12

Yes.

SPEAKER_00 28:13

It it is so hard to be able to stand up against the education system. And like I said, I do love our school district, and they have worked with me all the way for all these years now that we've been with them. But I also worked at a school for kids with autism, and I dealt with a lot of school districts. We are fortunate there are so many schools out there that are not nice and are intimidating and bullying to get what they want or need. And it's normally based on money.

SPEAKER_04 28:44

Well, yeah, well, this is the thing is that you know, one of the when my husband and I we sat down and we said, we can afford to not send our kids to school. Other families can't afford that. So for each, you know, for for for our kids, it's a lot of resources to for them to spend to educate our art autistic kids. Instead, we can homeschool. Um, I d what's funny about this, of course, is that I did not learn about the state money uh until later. Uh I don't know how because they don't tell you about it. No, of course not. Uh yeah, no. I actually a friend tell me about this. She goes, You don't get the state funds? And I said, What are you even talking about? And and so now I'm just really frustrated that we went years without it. It was because it is, you know, it's not insignificant. Some families, it's would be life-changing. Um it's life-changing for us. Like I said, it's not insignificant. We just decided we were like, why don't we not put this burden on this already overburdened school? And like just homeschool. One of my kids was diagnosed with a horrible autoimmune disorder uh sometime in the last three, four years, too. And he's had to miss school because of that. He would have had to miss school because of that. He was hospitalized for one week twice. And and it's like, gosh, can you even imagine that him being in in school with this? That would have been terrible. But it also has allowed us to do other things. Um, the older one uh rides horses, uh, and sometimes that needs to happen in the mornings, especially when it's really hot, or it needs to happen midday when it's cold, and that he wouldn't be able to do that. A lot of a lot of the kids who are who ride with him actually also homeschool because it's like gymnastics, you know, things like that. Like if you are sort of up there with the horseback riding, you you homeschool because you can't do it otherwise, otherwise. Um and and but he's gotten to do things like follow the vet around and learn all about horse and out. And and and he'll go to the barn and he doesn't get paid. He just goes and just helps out, you know, he'll clean stalls. He's like literally not paid. He does not, he's not an employee. He'll clean stalls and help with help around the barn and and he just likes being there. And I have a a memoir coming out uh in a year with West Virginia University Press about autism and horses. It's a it's a memoir of growing up as a horse girl and refining finding horses again, um in my in my early 40s, which has been magical. And that this one's a true memoir, not uh it's not an advice guide like this. But it does talk a lot about a lot of the things that are we've talked about today, you know, how to, you know, what it's like to get diagnosed in your in your in your forties or or later in life, and and then have kids who are also diagnosed and is in my childhood is in there too, and what that's like reckon reckoning with your childhood once you get this adult diagnosis, which is what a lot of us go through. Were you diagnosed as an adult? I'm guessing, yes.

SPEAKER_00 32:11

I was diagnosed at five with everything but the word. I had all these disabilities, all all the stuff, the executive functioning, the working memory, the ADHD, the FASD, all these things fell under this umbrella of the things that fit. And then um, I was working in a school for kids with autism, and she came to me, the boss who was like a friend of mine, and she's like, You're autistic. And I'm like, Well, yeah, I mean, I've always thought that, but I never and I did get the diagnosis without the word. I that's how I say it, because back then, you know, they really didn't throw that around like they do now.

SPEAKER_04 33:02

Definitely not for girls.

SPEAKER_00 33:04

And and I mean, I had everything. I mean, I I lined things up, I couldn't make eye contact, I didn't talk until I was older, and they actually called it selective mutism then and things like that. And you know, it's just really interesting how I had all this stuff, yeah, but then we just made it official when I was an adult. But yeah.

SPEAKER_04 33:27

Right. Right. Okay, so you were also diagnosed with AD ADHD as a child, which is amazing. So, you know, fist bump. Yeah. Yes. Uh yeah, I mean, that's it's just was very unusual for girls to get diagnosed with anything as children because we were just bad instead of, you know.

SPEAKER_00 33:45

Well, I wasn't kidding when I said that we were like the same person. I mean, it was unbelievable, really, and how we have had to fight the system now for our kids and take everything that we know from in our feelings and pains that we went through growing up. And now we're helping our kids. And one of the things that I've, you know, I think I wanted to apologize all the time for being who I was as a kid, but now I want parents to realize that we don't need to apologize for advocating and asking for systems to provide what our for our for our kids, what they need. And so many times, you know, we go into the schools over and over again and we're just like, I, you know, I really know my kid. I know that this is what's going on, I know what, and they're just like, oh, but no, uh, this is what we see, and this is how we feel that we need to handle it. And we're just like, no, but I really think that they need this. I really do, you know, and then you just get to the point where you feel so bad because here you are again as a parent asking for something.

SPEAKER_04 34:44

Yeah. I actually one of the essays, the original essays I wrote, um, I don't think it's in the book at all. I mean, the essays are not in the book in their original form. I pulled pieces and stories of them. So you so the swim team story is in this book, right? That where he's hit kicked off the swim team. It's in here in like parts, right? And so, but one of them is, you know, asking for too much at school. And like, am I asking for too much? That I have to like save up my asks until I really need something, you know, like but that like here's the thing. I shouldn't be have have to ask for any of these things at all. Why do I have to ask for my kid to not be bullied? That that'd be nice if I didn't have to ask for that, you know? Like, let's not do that. Why don't we just not bully my job? Yeah. And the other thing I will say, because you brought this up earlier with your kid who loved going to school and then one day came home and said, I am not going to school, and was really upset about even just setting foot inside that building.

Bullying, Believing Kids, And Building Trust

SPEAKER_04 35:49

This is a very common occurrence. And one of the things, again, the same child psychiatrist, genius, she's just a genius, she was way ahead of her time and highly respected, she said that children should want to go to school. So that middle schoolers, middle schoolers don't want to do anything. Okay, we're talking about kids, elementary school. Okay, they should want to go to school. They should be like, boop-badoo, let's go to school, time to go to school, let's walk to school, let's ride the bus. They should want to go to school. And so if your kid does not want to go to school, if your kid is like crying about going to school, or like, I don't want to go to school, mom, and they're really upset about it, and something makes them really not want to go to school, and they're only in like first, second, third, fourth grade, then something is seriously wrong and you need to listen. You need to get to the bottom of it because there is something happening that is serious. Right. They're not is that is not normal behavior for kids. And again, middle schoolers, different story. Middle schoolers, it's a terrible time of life. If we could all just sort of whoarp speed past that, it's sort of a I was so glad we homeschooled through middle school. My goodness, okay, it was great. And we just asked, we just we just were like, why don't you lie there in puberty for a while? And and then when you're done with puberty, you can sort of like come back and it'd be great. I mean, it was just they just it was so hard. Um, but at least they didn't have to deal with all of the just social just ramifications of being in middle school, which are so hard. They have their friends, but they didn't have to be in, you know, the classroom all day with where suddenly all of this because I you know, I I describe starting middle school as being hit in the face with a two by four of of social rules that I didn't understand. So I was oblivious, you know, all the way through like fifth grade when I was a kid. And then suddenly I'm I'm in I'm in middle school and and then every all the rules changed. Someone changed all the rules. And I didn't I didn't know what they were anymore. And I didn't know how to how to follow them, and I didn't know what I was doing wrong, I was doing which was everything by the way, and and it was really hard for me. And so the fact that I was able to save that my kids from that just horrible experience of just these invisible social rules that I mean that seem to change at the drop of a hat. Like we're not wearing that color anymore. Like, what is even happening? And so, well, the main thing is that we just need to listen to our kids.

SPEAKER_00 38:27

They are telling us something, and bullying is so rampant in the schools and it makes it so difficult. And, you know, I belong to our district's neighborhood page, I guess you could call it, and it gets real brutal in there. And it's, you know, I never make a comment because if you make a comment, it's like rare. But and one of the biggest things is though, they constantly bring up bullying within the schools. And I know that neurodivergent kids are some of the most vulnerable, and also adults for some reason, and I know that this happens because I've seen it in the threads, um, in the comments and everything, but that the adults, the authorities end up blaming the person, the the one who's being bullied lots of times, and so it makes it worse. And then the authority person actually is kind of bullying the neurodivergent person, and and it just makes it so much harder for them to even want to go to school, it's actually scary. And you know, the other part of that is is us believing our kids, and you really touch on that. And I loved that, where you know, you have a place and you're and they can come to you and you want to believe your kid. It's so important for a child to know that regardless of everything that's going on at school with kids, adults, everything, that they can sit across from you and you give them a space without judgment.

SPEAKER_04 39:59

That's right. Actually, it's funny, I learned that from the school counselor. And she said, When your kid is telling you something, be quiet. Number one. And number two, keep your face sort of pleasantly bland. It was an interesting dis thing. She's like, don't immediately make any sort of reaction on your face. She said, just stay calm and pleasant and let whatever your kid is saying, you might want to like run and get a shotgun and a shovel, but don't let them talk and listen. And it's so hard sometimes, especially back then when they were getting bullied a whole lot. But you need the whole story. And if you have this sort of big reaction to something that they're sharing with you, which is hard for them to share because they're embarrassed, okay, then they'll shut down. It was don't say anything except for hmm or tell me more, or sort of these, you know, encouraging words, and then keep your voice like pleasant, like someone's talking about the weather. Keep your facial expression calm. It can be so hard. And inside, you are screaming, okay? Right. On the outside, you are, and and the weather is sunny, and the I mean it's really hard. Right. But it works. It's what you're trying to do is just build trust with your kids. You want them to come to you when they have problems, you want them to come to you with the slightest problem. Anytime there's a problem, you want them to say, my mom, dad, whatever, is the person I need to go to with this. You don't want them keeping secrets. You want them, you want them to come to you. And so I have done everything in my power to, I guess, put money in that trust bank.

When Adults Enable Bullying

SPEAKER_04 41:51

Whatever I can do with that. As far as the bullying goes, everything you just said, my research supported, it was unbelievable. I couldn't believe what I found about how not only, of course, we already know that neurodivergent students at schools and then, of course, neurodivergent kids in any sort of like public organized activity are absolutely the targets of bullies. We know that. This is not a secret. Everybody is like, it's so high. The numbers are so high. They're in the book. I'm not gonna pull them out of my head right now. But but when I discovered the complicity of teachers, it was shocking. And so it was shocking in a couple of different ways. One is that how forthcoming the teachers were in these surveys about how they were complicit. And I don't know why they were so forthcoming, but they were. I'm glad they were. And maybe it was because they were realizing it for the first time, right? And maybe they're gonna change. Sometimes you do these things, these studies, and you realize, wow, I am not doing a good job. So maybe that's the case, and that would be wonderful. Um, but basically there's two ways. One is that they themselves bully uh uh neurodivergent kids um because they find them just frankly annoying. But the other thing is that they allow other kids to bully neurodivergent kids as a way of of enforcing, or if enforcing is not the right term, as a way of trying to get that kid to straighten out, right? So neurodivergent kid is annoying, isn't, isn't complying well enough with the classroom that the teacher wants. And so if these kids bully the kid into acting what more normal or something, then the teacher doesn't have to do it. So the kid gets bullied and then act and then and then shuts up and sits still for the rest of the day. That's a win for the teacher. And they just let it happen. I have a whole chapter just on bullying in the book on all the aspects. And there's the research on how teachers and other adults in positions of power over. Children are complicit was the most eye-opening thing that I found. I really couldn't believe it when I was reading it. And again, this is what I want to reiterate that I believe teachers have an important job. They work hard. They most most of them love their jobs and want to do a good job. I do believe this. Okay. I also believe they are underpaid and under-supported and under-everythinged. And it is extraordinarily difficult to teach in a classroom. So when you have this, why allow bullies to bully this kid? It's because they're like, I can't deal with that. So I'm going to let these kids do that because I'm so overwhelmed. In my opinion, right? This is where it's coming from. I'm being this is perhaps a naive or overly sympathetic approach to it. Now it doesn't mean that I have to put up with it. But this is my I I have a general rule. I get this from Brene Brown that people mo I believe that most people are doing the best that they can. Okay. That's in Brene Brown's book, uh Daring Greatly. And sometimes the best that they can hurts our kids. And that's not great. Okay. And so that is where we as parents have to step in and take the lead. Okay. And that's true. But I think that because teachers do want to do, they wouldn't have gone into it if they didn't, right? This is they're there for and maybe that's I remember I said earlier, I why why were they so honest? And questions, right? Right. And the answer is because they want to do a good job. They want to do the best that they can. And I think that it's possible the survey itself served as an eye-opener. And and that's why we got these honest answers. And so the survey was is cited in the book. You can read it. I have a copy right here. Because I love the cover.

SPEAKER_00 45:58

It's really nice. I like it too.

SPEAKER_04 46:00

I was just, I I have rarely received a cover where I had zero responses about sort of because they send it to you and you can like

Temple Grandin And Rethinking Assumptions

SPEAKER_04 46:09

give feedback. I was like, I love it, change nothing. So when I got this wonderful uh Temple Grandin, I gave a talk at Colorado State. I did not realize that she taught there. And she came to my talk and we had the most delightfully autistic lunch together. So the the provost who brought me, and then Timple Grandin like invited herself to lunch with us. And then and and then like and then another person was there. And she and I just started talking as though we had knew each other for for for 30 years. It was hilarious. We never stopped talking. Because with the horses, and now she's two works with farm animals, and we just blah blah blah blah blah blah. And I was it, I realized this is like I said, the most autistic thing ever. The the jumping, leaping way over all small talk, and like, and where do you live and how long have you worked here? And who cares about all that? Doesn't matter. Tell me about your horses, okay. And then it was hysterical, and we never stopped talking.

SPEAKER_00 47:12

I I have had conversations with her, I've spoken with her on the phone.

SPEAKER_04 47:16

Amazing, yeah.

SPEAKER_00 47:17

And I got to um talk for about 15 minutes in person one time with her. So I mean, I just love her. Um, and her philosophies are just amazing.

SPEAKER_04 47:27

So yeah, it gets a bit of a a bad rap these days because you know she's from this elder generation, but she came to my talk where I say some pretty forward-thinking stuff, and she she said, I'm changing everything about how I teach based on what you just said.

SPEAKER_00 47:41

I mean, she Oh my gosh. See, autistic people can change how they think and feel.

SPEAKER_04 47:48

I can. We are open. Really, really, and so I'm like, I don't know where where this idea, you know, this this idea of like old school autistic, you know, people like I don't know. I don't know what this is about, but I mean, I'm old school, I'm 50. I keep saying this. I love being 50, by the way. I'm not complaining. I think it's great. This is the year of Katie turning 50. I get I get a whole year for this birthday. It's awesome. So yeah, so I have this lovely endorsement from her for the book because I said, Would you mind you want to just give it a try? If you hate it, just stop reading. And she read it in like two days, gave me this lovely endorsement, and I was over the moon. It was really um a delightful experience. So, yeah, so the best part of you can't you can't really see the best part of the cover, which is this little endorsement at the top from Temple Grandin. So, yeah, that was great. Yeah.

The Gladiator Pit Of Scarce Resources

SPEAKER_00 48:42

But but before we talked about Temple Grandon, you were talking about um the school systems, and you know, you touched on something that was actually it's it's it's a really big problem because we're kind of talking about something where we're throwing parents into a gladiator pit, you know, and they're fighting schools, and schools are fighting budgets, and parents are fighting also out in other systems like insurance companies and therapists are fighting for reimbursements, and sometimes parents even end up fighting other parents, you know. So everybody's competing for all of these resources, but the resources just aren't there. And sometimes in the middle of the uh neurodivergent child becomes they they become the expensive kid, they become the difficult kid. Yes. But maybe, I mean, we're all fighting, let's just face it. And but maybe we're all fighting the wrong people. Do you think that we've allowed families and education and all the other systems to become enemies when in reality they're often just being harmed by the same broken system?

SPEAKER_04 49:46

So this, yeah, so this metaphor of the gladiator pit, I picked that on purpose because we're fighting down below, but as a distraction. When the people who with the money, the wealthy people who roll the purse strings, are sitting up in the stands watching us down below. Yes, parents fighting each other, like my kid is taking too much individual attention. And so there's not enough time for the tennis coach at the clinic to pay attention to their kid who's following all the rules, right? So that that person gets mad at me because my kid is requires this idea of requiring too much individual attention. Whenever I hear that phrase, I'm like my my ears perk up. I'm like, why? Uh and that goes way back to that narrow norms, right? Are we requiring goggles? Because they don't require attention if you stop requiring goggles.

SPEAKER_00 50:40

And it doesn't mean because they do need something, it takes away from the other kids. That's right.

SPEAKER_04 50:46

And so, so right. So the idea that there's only this limited amount of resources in schools, which is why, like I said, we pulled our kids out. There was only a limited amount of resources, and my our kids were not being served. And so at home, we're able to serve them better. But like, yeah, why are we all fighting, like the you know, parents each fighting each other, fighting the schools, fighting coaches and this and that, and all these people struggling against one another down here when these policies that are being set by you know politicians? It's really just politicians holding the purse strings that are sitting up in the in the stands where the rich people sit, you know, deciding what the budgets should be. How much money, you know, do I get as an education grant for my kid? Is it enough to pay for we have a private school here that is for neurodivergent kids, but this grant would pay for one half of one year's tuition? That's it. Okay, it doesn't even come close to paying for the whole thing. So it wouldn't even begin to pay for it. Okay. So I mean, it's we wouldn't, they don't they don't want to go there anyway. And so who determines how much money schools get to support neurodivergent kids? Why is there only one AC teacher for an entire elementary school? There should be 20. That's you know, what is happening right now?

SPEAKER_00 52:15

And like if you if you're in my our school district, which is many, um, see the money, the the monies have been cut from the schools. So then they go to the taxpayers, which then say, Well, we're gonna fail this. So then they, our school district, as many, like I said, are like they're scaling down even more and more of the resources that they did have for which affect special needs kids.

SPEAKER_04 52:39

Right. Exactly. I mean, and that's the thing that I learned from my friend who was the EC teacher, is she says the people who are gonna get hurt most by these cuts that are happening in North Carolina, just we just keep cutting and cutting and cutting education. Right, right. Is our she's like, are your kids? I mean, she was not even mincing words at that point. She's like, Yeah, I mean, this is who's gonna get hurt. You know, I stayed in touch with her when COVID hit. She said, There is absolutely no plan in place for disabled children right now, just so you know. If you're thinking about coming back, don't. And so there's just not there was no nothing. They had nothing in place for that. And I said, She's like, they have we have no way. We don't have any, we don't have a plan in place or a plan to have a plan in place. Okay. Um, and so I was like, Thank you for your honesty. I appreciate it. And so it's us fighting each other, you know, is a distraction from fighting this, you know, this these larger institutional battles, which again, that's a that's a tougher one to do, right? It's like that's that's at the ballot box. That's at that's that's learning who in your state is is cutting funds from schools. You gotta sit down and look, you know, at your state legislature and and see who is cutting funds from schools and then vote them out. You have and then talk and tell your friends. And and you know, I I'm a member of a uh a homeschooling group, and you know, so many of it's just coincidental. So it's it's just a homeschooling group, but coincidentally, a lot of them, a lot of our kids are also neurodivergent, right? And and we talk about these things, and so I'm I encourage people to, you know, form these groups, and it's a great group. I think they're fantastic, and I love people and I've learned so much. I learned about, for example, the school that my the the high the accredited high school for twice exceptional kids that my kids have taken classes with, you know, that has that I I'm like I would I never thought that they would enjoy online classes before. And they love this, they love it because it's it's designed for brains like theirs. Um but I never would have figured it out or learned about it if I had not been in this group. And all we do is go get, you know, like basically go get beers once a month on a Friday night. I think that that sort of support, that sort of it's just it's like this club. And I only found out about it because I have an across the street neighbor who is a member. But so I would search for in-person meetups that you can join. I would search for all these things. I only wish, like every single thing I'm telling you, the funding, the the the this meetup, I only wish homeschooling. I only wish we had done it sooner. All the things.

Start Earlier And Stop Going Alone

SPEAKER_04 55:36

And so what I'm you know, when I come on a podcast like this, what I want people to learn is do it sooner. Start earlier.

SPEAKER_03 55:44

Yeah.

SPEAKER_04 55:45

Uh get your kids tested sooner.

SPEAKER_03 55:48

Yeah.

SPEAKER_04 55:48

Get the IEP sooner. Start earlier. Get your kids a therapist sooner. Just start earlier. Everything I did, I just wish I had done sooner. I didn't understand about food selectivity. I didn't understand that I could push back against the the belts and the the the pants and it with the uniforms. I did not, I just didn't, I allowed myself to be pushed around too much. I am a law professor, I'm an attorney, okay? And I struggled with this. I can only imagine how hard it is for so many parents who to struggle with this, right? It's like if I'm sitting there weeping during these meetings, okay, I wish I had known to bring an advocate. Just even you know it can people don't know this. It can be anybody. It doesn't have to be a lawyer or e or or a person who is an like a lot of people who are psychologists who do this work also come as advocates. It can be like you're a bestie. An advocate can be anybody. You're allowed to bring anyone, okay? And and all they need to do is just calm and sit there, and maybe they they just take notes. Maybe you share with them in advance, okay, here's what's gonna happen, and here's where I'm gonna fall apart, and I'm gonna need you to say these words and you hand them or ask ask these questions. They're allowed to do that. It can it does not have to be some official person who's registered with some database of of advocates. That's not a thing. Okay, it can be anybody. Um I recommend, you know, if you don't want to spend the money on like a person who's trained as an advocate, is somebody else who's been through it. You know, maybe their kid went through this whole thing and they're and they have a little older than yours, right? And and they've they're they got this nailed down, right? And so you say, come with me to this IP meeting. I've never done this before. Or or or I'm still new to it, you know, come with me to my IP meetings because I'm I always just fall to pieces because it's it's so hard. And and then, you know, and your friend says, Yeah, sure, of course.

SPEAKER_00 57:56

I have had so many friends of mine whose kids are, you know, in the same situation, and they because we've kind of paved this path, um, they'll they'll call me and ask me for all kinds of advice and how to go to the meetings. And you know, I am all about that. I I will give this advice for free.

unknown 58:16

Yeah.

SPEAKER_04 58:17

My my good friends, of course.

SPEAKER_00 58:20

Exactly. Yeah.

SPEAKER_04 58:21

It's that's what friends are for. We're we're we're for supporting each other.

What Belonging Looks Like In Real Life

SPEAKER_00 58:25

You know, your book is called Your Kid Belongs Here. What does belonging look like for a neurodivergent child?

SPEAKER_04 58:33

Tough one, yeah. I picked I picked the title because for so long it felt like my kids didn't belong anywhere. Like everywhere we tried to fit in, they didn't they got kicked out of this and kicked out of that. And I looked back at my own childhood and I got kicked out of this and kicked out of that myself. And sometimes we need a mantra, and you need to be able to say to yourself, My kid belongs here. My kid gets to be here. And so I meant it as a mantra, like that, as as a as a firm statement of something to believe in. Your kid belongs here, your kid deserves to be here. Your kid is not a burden, your kid is not something extra or something that that is a that is requires too much, your kid is not too much, okay? Your kid belongs here on this earth in the school, wherever you decide your kid belongs, your kid belongs there. I do think that if your kid says, I don't feel like however they can express it wherever they are in life, I don't feel safe in this place, like how your child was expressing to you with the to the best of their ability that they didn't feel safe going to school, right? You should not force them to go, absolutely not. And I also think that when my younger son, for example, was kicked off the swim team, that we should not force them, force adults who do not want our kids there to have the kids there because they won't keep them safe. I don't trust them to keep my kids safe. Right, right. If I'm shoving my kid down their throat Yeah, I don't trust them now at all, right?

SPEAKER_00 1:00:27

Yeah, 100%. I would not force my kid to stay with that adult. I would run.

SPEAKER_04 1:00:32

I would run. Exactly. And so, but the fact is, is that the ending of that story went like this. I went to the head of the pool and said, My son was just kicked off the swim team for this really stupid reason. I pay dues, he met all the requirements. I want private swim lessons for my kid for free, and I got them because my kid belongs to me. Okay.

SPEAKER_00 1:00:55

I love that. That's such a great ending to that part, that story, that's amazing. And see, you had to speak up, and that's what we have to do. We have to carve a path for our kids to belong. Katie, what I took from your book is that, you know, if we ask for support or whatever they need, you know, it's not shame. And we don't want to shame our kids. We don't want them to walk away from school or any of these systems feeling shame. And accommodations isn't lowering expectations, and difference isn't deficiency. I mean, these are all huge messages in your book. You know, I was gonna talk about some other things that we didn't get to, but maybe another time we'll have to talk. But a meltdown isn't automatically misbehavior, a forgotten instruction doesn't mean someone doesn't care. And asking a school team or institution to make room for a neurodivergent child isn't asking for special treatment, it's asking for access. You know, our kids spend so much of their lives bending around schools and schedules and noise rules and expectations. Maybe sometimes, just maybe, you know, they could bend a little bit. Because the goal isn't to raise kids who become really good at pretending that they don't need anything. It's to raise kids who can say, This is who I am, this is what I need, this is what I'm good at, this is where I struggle, and I still deserve to belong.

Final Takeaways And Where To Find Katie

SPEAKER_00 1:02:25

So Katie Rose Pryal is the author of Your Kid Belongs Here, an insider's guide to parenting neurodiverse children. Katie, thank you for writing this book and for having this conversation with us. Do you have a website that people can access?

SPEAKER_04 1:02:40

Yes, it's very easy. KatiePryal.com.

SPEAKER_00 1:02:43

And for parents listening who have spent years wondering whether their child is asking for too much, maybe the message is simply this your child isn't asking for too much by asking to belong. And neither are you. Thank you for listening to Real Talk with Tina and Anne. And we are all, and as we always say, there is purpose in the pain and there is hope in the journey. And we will see you next time.