Parenting ND Kids: The IEP Fight Nobody Prepares You For

Hello, hello, hello.

This is Danielle. And Vyda with ND Out Loud, and you're gonna notice that we're saying a different name now. We realized that with all of the changes and everything that's happened since October, we hadn't landed on a solid name. And we realized ADHD Out Loud was actually taken from a foreign app that actually hasn't ever Launched and doesn't exist, but we decided to change to ND Out Loud cuz we actually really don't focus on just ADHD. We focus on all of the spectrum of neurodivergence. So we are kind of switching up just our name just a little bit. And today we're going to talk about being a parent of an ND kid. We are both parents of ND kids. Mine is obviously married and gone now. He's 26. So I was in the thick of dealing with an ND kid when there was no internet to look everything up on.

Yeah, a lot of trial and error, a lot of crying in the bath. I mean, I'm just being honest. I worry about being a horrible mother all the time, all the time. And I had a therapist tell me one time that the sheer fact that I worried about whether or not I was a good mom meant that I was a good mom because I was constantly trying to do better, right? And so like in true neurodivergent fashion, I was just like, okay, yeah, whatever. Thanks. Like, that's not helping me. And I come back to that time and time, I show up consistently. Yes, I make mistakes, but I try to improve and I really try to be who my kids need or who I needed when I was that neurodivergent kid, you know? But it is hard. Having neurodivergent kids is so much harder than having neurotypical kids. There, I said it.

Yeah. It is being neurodivergent yourself, having a neurodivergent child opens up the world for so much, especially if you're an ND adult who maybe didn't get diagnosed until late and didn't know as you started parenthood why your brain, why you couldn't function, why you couldn't do the things, why your kid can't do the things. Like there were no answers. You were just in overwhelm and frustration mode all the time. I see so many parents that once, once that diagnosis comes in, mostly for their kids, cuz they take their kids to get diagnosed because the school's like, oh, you gotta do something. They take their kids to get diagnosed and then they're checking off the boxes going, I need to go get tested.

Ah, yeah. I mean, I have a sister that has been diagnosed since she was 2. My brother's dyslexic. There is a history of neurodivergence in our family. But I skated through without any kind of diagnosis or people. But guess what? I was in the gifted program, you know, and I didn't have problems at school and I had friends, so nobody looked harder at me.

Right.

And so then when I became a teacher, when I had my own kids and I could see my kids struggling. And really it was my daughter. She was struggling socially and I had to fight to get her on an IEP cuz they're like, well, it's not affecting her grades. And I'm like, yet, but it's affecting her so much that she's like biting her fingers and chewing on her knuckle. Like she had all these tics, right? That she had developed cuz she was struggling so bad. And when we went in and we filled out all the paperwork to get her diagnosed, I asked the doctor, I was like, can I have a couple copies of this? And she goes, what for? And I was like, cuz my husband and I need to fill this out.

And it was a huge— so I've known I was ADHD. I knew I was neurodivergent long, like in school. Of course, anybody that's heard my story knows that I was diagnosed as mentally retarded because early '80s rural school, that was their answer. Nobody bothered to try to teach me anything until I was almost 12. You know, all of the things, all of the things that can go wrong in the special ed education program in a really rural country, tiny school. And when I say tiny school, there were 25 people in my graduating class. Okay. That's when I say tiny school. I, I mean super tiny school. So all of those things brought me to my son and I was like, so I knew I was dyslexic. I knew I was ADHD as a kid. I mean, I've known that forever, but that the autism thing did not strike until my son was little.

We knew.

When he was like less than a year old. My kid was talking in full sentences at 6 months, like full, like a professor sentences at 6 months old. Like, this isn't normal. And he can't touch anything. If we put him on grass or anything textured, he freaking has a meltdown. And he doesn't sleep. Like, he did not sleep until he was 6 years old.

Wow.

And I'm not kidding. And that was when we finally medicated him. So there were so many questions. And of course, doctors Thought I was overreacting and I didn't know what I was talking about. You know, I went through all of that. So when I finally got him diagnosed, I was like filling out the paperwork going, oh, that explains a lot. Oh my gosh, that explains a lot. And then I got to see Carol Stock Kranowitz, who wrote The Out-of-Sync Child at a local college. I got to hear her speak. And I went, oh my gosh, this makes so much sense. I worked on a farm as a kid and there were things as a kid that never bothered me. And as I got to be an adult, I wasn't doing some of those physical heavy lifting type activities anymore.

Right.

And I'm reading this book going, I need to get my son to do these things. And it helped immensely with some of the meltdowns and things like that. I mean, it did not cure him, so let's not go there. Anybody who hears cure in any of this stuff, please stop. I've seen a lot of that crap on the internet.

But I do think you bring up a good point, like occupational therapy and doing physical things, hands-on things is great for our kids. So like parents will say, I, I, I don't know what to do. They're just energy nonstop, this, that, and the other. I'm like, give them a job, go outside. Like I am a firm believer, and this is leftover from my school teacher days. I even did it with high schoolers. If they came to class and we had way too much energy going on, we would go outside and be like, run and touch that fence and come back, you know, because they needed some physical input. They needed a stim. Like, and then I also think too that for all the adults out there that kind of went through life melting down internally and didn't get diagnosed until later in life or have a high suspicion that you are or have self-diagnosed. The reason that we were able to do that, the reason that all these adults missed that is because adults, teachers, parents and stuff, they look at the outcome. So if you're able to complete the task, unless you're being micromanaged, which does happen too, but like if you're making good grades, you are not falling into a problematic area.

Yeah.

If you are not getting into fights on the playground every day, you are not falling into a problematic area. But those are some extreme cases. So there's all these kids that are suffering silently in the middle.

And, and I firmly believe what the gifted and talented program that we all get put in, all the gifted and talented program I got put into in school was because I was problematic for the teacher. I asked questions and I was stopping her from teaching. I was operating at a different level than other kids. And I was keeping her from operating at the level she needed to for everybody else in the room. So I got shoved in the gifted and talented program and got— was given projects to do to keep me out of their hair.

Which is crazy because from an education standpoint, project-based learning is an enrichment activity that all children should have. It should not just be the ones that won't shut up because I was that kid too. Like, The only bad mark I ever got on a report card was in the first grade because I couldn't stop talking, you know, and it's like, oh, she's really smart. She just can't shut up. And so now, you know, like when you look at, I could lay all my stuff out and look back and now that we understand the brain more, I could be like, oh yes, there's all these signs and symptoms and stuff. But that's not how they handled things in the '80s and '70s and the '90s. And, and so. There are so many people like getting diagnosed, and even with a diagnosis of autism and ADHD and OCD, people are okay with my ADHD diagnosis. They can even accept my OCD diagnosis. The one that gets the most comments is my autism diagnosis. And—

That's offensive to people for some reason.

I have a theory, but that's a podcast for a different, a different day. So, but if I say that my kids are AuDHD, which they are, again, people will believe the ADHD diagnosis, but not so much the autism diagnosis. So it's—

Part of it is our society still has a vision or a perception that autism is Temple Grandin or a child that, the child that sits in the corner and rocks and smashes their head on the wall, or Cody Lee from America's Got Talent. He is autistic. So they have this extreme, like the extreme of the worst level of autism as the only view that autism can possibly be.

I think they're trying to change that some in pop culture. Like we have The Good Doctor, but he still is very apparent in his presentation of his autism, but still. So like when we're trying to parent our neurodivergent kids and we know Right. Even if you're a neurotypical parent parenting a neurodivergent kid, we know our kids. We know what their abilities are, what they're suffering with. Like, are they crying when they come home because they don't have any friends? Like, we know all these things and people don't listen to us. And that to me was the most frustrating thing about raising our kids. That and the fact that they ask questions about literally everything under the sun and occasionally I just have to look at them and be like, I don't fucking know. I don't know.

Like, let's look it up.

I don't know. Because they want to know everything. They wanna know how it works. I would love to know everything, but I don't know.

One of the best skills that I taught my son at a young age, as soon as we had internet in the house and he was about 4, I had to teach my son to go research something himself. I taught him to do that for my own self-preservation.

That is a skill. And it needs to be taught to all of them.

Because holy crud, stop asking me questions to go figure it out yourself. And some of the time it was the ADHD boy thing. He was totally asking me because he didn't want to go look it up, and I was hoping I would just know it for him so he could be lazy. The other part of it was he was constantly asking questions and wanting to know the thing. No, go look, go, go figure it out. But I mean, he never had no supervision on the internet, but man, that was the best skill I ever taught him. think is a big deal when we have an ND kid is learning how to navigate school system. And this is probably going to be another podcast. We actually are gonna bring Dr. Jessica Hickstead on with us that was part of the summit to really talk about this a bit. But learning that the school system and the process, especially if your child is high functioning and considered academically fine, and I'm putting all of those in quotation marks.

Totally.

Because if your child has anxiety about academics, they're not academically fine. Navigating that with a school system is really, really difficult.

100%. Like, it's horrible. As someone, I mean, I was a teacher for 15 years. I worked, I was a high school English teacher in a low socioeconomic school for 8 before I went, got my master's degree, my special ed certification, and went into behavior modification. And yeah, even a teacher working In a federally mandated department for behavior modification, teaching a large district how to implement positive behavior intervention, stuff like that. When I would go to my daughter's school and say, hey, there is an issue with my child. I suspect a disability and I need your help helping her. I still got pushback. Like, I was nice. I took all of the steps. I went up the chain of command. I did everything that you're supposed to do because I know that a lot of school systems are extremely defensive and want to argue. So I took all the steps and it took forever and it ended up leading me to homeschool my kids. I still was able to get them on an IEP before we did that, but it was a huge fight. And the school system started taking it out on my kid. Like, there was a definite kind of like frustration that like when they had to do an accommodation for her. So I have a problem with that. Like, and I'll say this to every educator and every parent, like, if you can't give my kid an accommodation without being an asshole, like, just don't talk to my kid. Like, we'll find another classroom for them.

Yeah.

And that's not, doesn't happen all the time, but I hear so many parents talk about the fight to get their kid on an IEP or to get their kid tested. Or just when I first went in, I was just asking for some support. Like, she's having these issues. Have you guys noticed anything in the classroom? Oh, you haven't. Could you maybe watch out for that so we can compare notes? Like, it was very much, I just wanted us to be on a team together for some success. And then the more pushback I got, I very quickly became labeled that mother.

Oh, I got labeled, I think, second week of kindergarten. So I get that.

I was labeled that mother to where when I showed up at the school, they would have a school resource officer show up. And I'm like, who are y'all like worried about? 'Cause I never acted crazy. I never raised my voice. I never did any of that. I was just, but they had to show this force.

Try to keep you in your place, right?

So what I did is when they pushed back, when they would not take care of my child the way that they're legally supposed to under that IDEA law—it's a federal mandate—I contacted the district office, and things happened very quickly after that. My kid got support, but again, they hated us. So when she Completed 5th grade and it was time for middle school. That's when we decided to homeschool. But there are a lot of parents that decide to homeschool their ND kid for many of those same reasons, or maybe they have an IEP and they're getting support in the classroom, but they're getting bullied socially. And there's even more parents that homeschool their kids, uh, neurotypical and neurodivergent, because there's just a lot of unsupervised time. Yeah.

Yeah. And I did choose, my husband and I did choose to homeschool my kid, my son, because he was bullied. He put him in speech, my kid that spoke in perfect sentences under a year old. They put him in speech to teach him how to say the letter S and because he needed speech. Why did he need speech? Well, he doesn't talk like everybody else. Okay. It was just an argument. Everything was an argument. Everything was an argument. I was that parent. I was that parent enough that they turned me into CPS to try to Teach me a lesson.

This is why parents that have questions about the process or any of that, like there are so many parent advocacy groups on social media. Not all of them are good, but a bunch of them are. There's a lot of great parent advocacy groups there on, on social media. There's some locally. When in doubt, look for a special education lawyer in your area. A lot of them will talk to you. At least initially for free.

Yes. And they will connect you with whatever your local advocacy group so that you can have an advocate every school teacher meeting, every IEP meeting, every everything. And they are fantastic and amazing resources for you. It's gonna be a fight. And if you are ND too, make sure that you as the ND parent of an ND child, whether you're having to fight with the school or not, if you have an amazing school that just gives you services, There are many that are getting much better at that, but I want something that people forget is you're not just little Mikey's mom who has issues. You need support to get the support that you need.

Absolutely. Because regardless if you're neurotypical or neurodivergent, being the parent of an ND child, you need support because these children are going to, like, Challenge you. They're going to ask questions. They're going to frustrate you. They're going to have problems that you literally cannot solve or know how to scaffold them. But, and you need people to vent to, right? There are lots of emotions that we have parents that are very unattractive that we do not want to vent on our child or even our spouse. But sometimes we just need to tell people like. I just can't stand my kid today. It's not because I don't love them. It's because I am a neurodivergent person and I am overwhelmed and I don't have the spoons. And there's all these things that, that we're really not prepared for, but we can help each other with.

And understanding a Facebook group is rarely the best place to go for this. And the reason why I say this is because Facebook groups are highly unmonitored more than anything. Really find something. There are so many Telegram rooms for parents like us. There are forums, there are spaces. I mean, we have an online community where we have space to have these discussions. We're not— definitely not the only one. And I encourage you to find the one that's the right match for you and find a tribe of people. And I do label it as tribe because we should be operating in small, tiny, supportive communities, and we just don't have that in our world, especially in the US. Other countries do have this, and, and I find that so cool. But we don't here in the US. We don't have the space that we need to find people who we can talk to. And I'm gonna tell you something. It's okay to hate your child today. It's okay to dislike them immensely. It's okay to sit in a closet and eat that Snickers bar and hide from your child. It's okay to do nothing. It's okay to make sure only basic necessities are taken care of and they're alive at the end of the day. If you don't get a bath today, with them. Oh well, it's fine. Life can happen without June Cleaver style parenting every single day of the week.

Yeah, because the people, the parents, the stories that people tell, like, oh well, she's just able to do everything, or he's able to do everything, they're such good parents. I'm gonna tell you, that is the ESPN highlight reel. That is a social media clip, and that shit does not— selective Does not exist. It is a performance piece, and those are things that are not able to be maintained long term. So I don't want any of you out there to feel bad if you have a bad day or a bad week or whatever. Not every day is a gold star day, and most people live in the bell curve. We live at the 70% mark of a bell curve. So you're just really trying to skate through life with the C average. On everything we do because that is maintainable.

So I often say my son is lucky to be 26. Let me tell you, there are days he's lucky he survived. There are days I'm lucky I survived. There are days that I'm surprised the house is still standing. He had a little neurodivergent buddy and they tried to set fire to my house multiple times as preteens and teenagers. Actually, the older they got, the more dangerous they got. It's okay. And I can tell you, as a parent of an older ND child, I can tell you a million success stories and how he is An amazing adult. I can also tell you why he's the biggest idiot I have ever met in my life today, if you would like me to. You tell me what version you need to hear of parenthood and ask for the bad version. Because I can tell you of the day that I sat in the middle of the living room and he was pulling— he was having a meltdown, and I don't even remember what this particular meltdown was. And I just sat in the middle of the living room and bawled because I hate my child. And I felt like such a terrible person because you're not supposed to hate your child. You're supposed to love your child. You're supposed to be able to get them to behave and be the per— no.

Can't successfully navigate the things that we expect children to navigate. Yeah. So it's just, life will be okay. Even if all you accomplished today was waking up and eating some Cheerios and then going back to bed, it's okay. But our goal is To provide you with a resource. So if you're struggling, I don't want you to struggle by yourself. Like, start with Google. It's generally the best place to start. It's not the place you're gonna end up, but start with Google. Send us an email. If we are not the right community to help you, we will help you find one.

I want you to find it. And if you need books to read, if you need YouTube channels to watch, the amount of resources that Vida and I have combined is kind of insane, but I will tell you, and I mentioned earlier in this episode, Carol Stock Kranowitz wrote a book, The Out-of-Sync Child. If you have an ND child, whether they're functional, nonfunctional, whatever, I will tell you that book saved my life as a parent. And we all will tell you that we have a book that saved our lives as a parent.

So many of them.

Oh, so many books. So many books. So many books. So many. And now there's so many YouTube channels and so many places to learn from. There are so many resources out there now that I didn't have in the early '90s or mid-'90s, early 2000s that didn't exist because the internet was still pretty blah and not that helpful. But there's so much out there. You can get the support you need. Even if we aren't, we will for free help you find the right resource that you need in your situation.

Okay. So one of the things, and sometimes our lives lead us to places To where we can help other people and where we can, can do other things. So when I was working in the behavior department for Oklahoma City Public Schools, I got a chance to do an extensive training with Dr. Laura Riffle. She is known as the behavior doctor, and she is someone that districts will bring in to teach tiered intervention, positive behavior intervention. Different things, and you can find her. I put this out to people all the time. It is pbisworld.com. So if your child has a behavior, and this is a website that's really for teachers, but as parents, you're a teacher for your child. So if your child is exhibiting a behavior and you do not know where to start to help them, go to this website. It has all these behaviors listed and you just click on the one. And then it takes you to like another question and it, and you answer a few and then it gives you a list of things of interventions and there's tier 1. And then if those don't work, you go on to tier 2 and then tier 3. These are also things that you can help your school district, your teachers, different things with, because not everybody knows about this. And if you ever have a chance to speak, she's amazing. She teaches you some things that we really overthink and analyze. Like we just spend so much time beating our heads against the wall about like, okay, if you tell your child to set the dinner table and they're just like, no, absolutely not. So then you have defiant behavior, you have all this stuff, and then it becomes a battle of wills. And she's like, instead of doing that, say, do you want to set the table with the blue plates or the red plates? They're still setting the table, but they get to choose the plates. So it is like kids have this need for autonomy. They have the need to be in charge of something. So her thing is like, we help them find autonomy in places by offering them choices. That's, that's really kind of the basis of her thing. But I am thankful every single day that I got to go to that training and do all that work. Because now as a neurodivergent coach that helps parents and kids and even adults, like this stuff works with adults too, because we get hung up on the thing and it becomes a battle of wills instead of looking at how to circumvent the whole situation and just fix the problem.

There are so many ways, so many ways, and you know your child the best. Be your child's advocate. Get support for that advocacy if you need and find support for yourself. Because if you are an ND parent, like you yourself are ND, definitely get support because your own executive dysfunction, RSD, all of those things are gonna be woven into everything and you're— I don't wanna see you struggle like I did in trying to figure it out because there was nobody for me when I was at that point. I want you to find what you need. So reach out to us today. You can DM us, you can email us. We're at info@theoriginaladhdcoach.com. We're really easy to find and we can help. We really can help you get the support you need. And I hope this podcast episode helped. If you got anything outta this, let us know. We wanna hear all about it. Leave us a review. I hope you have an amazing day and you find what you need for your kid today.