Parenting ND Kids When You Are Neurodivergent Too

A new name, and an honest start on ND parenting

Danielle: Hello, hello, hello. This is Danielle and my co-host with ND OutLoud. You’re going to notice that we’re saying a different name now. With all of the changes since October, we hadn’t landed on a solid name, and we realized the old name was taken by an app that never launched. And we decided to change to ND OutLoud because we really don’t focus on just ADHD. We focus on the whole spectrum of neurodivergence. So we’re switching up 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 married and grown now, he’s 26, so I was in the thick of raising an ND kid when there was no internet to look everything up on.

Co-host: A lot of trial and error. A lot of crying in the bath. I’m just being honest. I worry about being a horrible mother 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. In true neurodivergent fashion, I was like, okay, yeah, whatever, thanks, that’s not helping me. But I come back to that time and time again. 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. But it is hard. Having neurodivergent kids is so much harder than having neurotypical kids. There, I said it.

Danielle: Being neurodivergent yourself and 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 couldn’t function, why you couldn’t do the things, why your kid can’t do the things. There were no answers. You were just in overwhelming frustration mode all the time. I see so many parents that, once that diagnosis comes in, mostly for their kids, because the school says “you’ve got to do something,” they take their kids to get diagnosed, and then they’re checking off the boxes going, “I need to go get tested.”

When your child’s diagnosis becomes your own

Co-host: Yeah. I have a sister that has been diagnosed since she was two. My brother’s dyslexic. There is a history of neurodivergence in our family, but I skated through without any kind of diagnosis, because guess what, I was in the gifted program. I didn’t have problems at school, and I had friends, so nobody looked harder at me. Then, when I became a teacher, when I had my own kids, I could see my kids struggling. Really it was my daughter. She was struggling socially, and I had to fight to get her on an IEP, because they said, “Well, it’s not affecting her grades.” And I said, “Yet. But it’s affecting her so much that she’s biting her fingers and chewing on her knuckles.” She had all these tics she had developed because she was struggling so badly. And when we went in and filled out all the paperwork to get her diagnosed, I asked the doctor, “Can I have a couple copies of this?” She said, “What for?” And I said, “Because my husband and I need to fill this out.”

Danielle: I knew I was neurodivergent way back in school. Anybody who’s heard my story knows I was misdiagnosed, because in an early-80s rural school, that was their answer. Nobody bothered to try to teach me anything until I was almost 12. All of the things that can go wrong in a special education program in a really rural, tiny school. And when I say tiny, there were 25 people in my graduating class. So all of that brought me to my son. I knew I was dyslexic, I knew I was ADHD as a kid, I’ve known that forever. But the autism thing did not strike until my son was little. We knew when he was less than a year old. My kid was talking in full sentences at six months, like a little professor. This isn’t typical. And he couldn’t touch anything. If we put him on grass or anything textured, he had a meltdown. And he did not sleep. He did not sleep until he was 6 years old, and I’m not kidding, until we finally medicated him. There were so many questions, and of course doctors thought I was overreacting and didn’t know what I was talking about. So when I finally got him diagnosed, I was filling out the paperwork going, “Oh. That explains a lot. Oh my gosh, that explains a lot.”

And then I got to hear Carol Stock Kranowitz, who wrote The Out-of-Sync Child, speak at a local college, and I went, oh my gosh, this makes so much sense. I worked on a farm as a kid, and there were things that never bothered me as a kid, and as I became an adult I wasn’t doing those physical, heavy lifting activities anymore. I’m reading this book going, I need to get my son doing these things. And it helped a lot with some of the meltdowns. It did not cure him, and let’s not go there. Anybody who hears “cure” in any of this, please stop. I’ve seen a lot of that garbage on the internet.

Co-host: But you bring up a good point. Occupational therapy and doing physical, hands-on things is great for our kids. Parents will say, “I don’t know what to do, they’re just energy, non-stop.” And I’m like, give them a job. Go outside. I’m a firm believer, and this is left over from my school teacher days, I even did it with high schoolers: if they came to class with way too much energy going on, we would go outside, and I’d say, “Run and touch that fence and come back.” They needed physical input. They needed to stim.

The gifted kid pipeline: suffering silently in the middle

Co-host: And for all the adults out there who went through life melting down internally and didn’t get diagnosed until later, or who highly suspect they are, or have self diagnosed: the reason all these adults got missed is because teachers and parents look at the outcome. If you’re able to complete the task, if you’re making good grades, you’re not flagged as a problem. If you’re not getting into fights on the playground every day, you’re not flagged. But those are the extreme cases. So there are all these kids suffering silently in the middle.

Danielle: And I firmly believe 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 the 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 into the gifted and talented program and given projects 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, not just the ones that won’t shut up.

Co-host: Because I was that kid too. The only bad mark I ever got on a report card was in first grade, because I couldn’t stop talking. It was, “Oh, she’s really smart, she just can’t shut up.” Now, when I lay all my stuff out and look back, now that we understand the brain, I can see all the signs and symptoms. But that’s not how they handled things in the 70s, 80s, and 90s.

Danielle: And even with a diagnosis, 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. That’s offensive to people for some reason. I have a theory, but that’s a podcast for a different day.

Co-host: If I say my kids are AuDHD, which they are, people will believe the ADHD diagnosis, but not so much the autism. Part of it is our society still has a perception that autism is Temple Grandin, or a child that sits in the corner and rocks, or Kodi Lee from America’s Got Talent. They hold the most visible, most extreme presentation as the only view of what autism can possibly be. Pop culture is trying to change that some, like The Good Doctor, but even he is very apparent in his presentation.

So when we’re trying to parent our neurodivergent kids, and we know our kids, even if you’re a neurotypical parent raising an ND kid, we know their abilities, we know what they’re struggling with, we know if they’re crying when they come home because they don’t have any friends. And people don’t listen to us. That, to me, was the most frustrating thing about raising our kids.

Danielle: That, and the fact that they ask questions about literally everything under the sun, and occasionally I just have to look at them and say, “I don’t know. Let’s look it up.” They want to know everything. They want to know how it works. One of the best skills I taught my son at a young age, as soon as we had internet in the house and he was about four, was to go research something himself. I taught him that for my own self-preservation. That is a skill, and it needs to be taught, because holy crud, stop asking me questions. Go figure it out yourself. Some of the time it was the ADHD boy thing, he was asking me because he didn’t want to go look it up. The other part was he was constantly asking questions and genuinely wanting to know. He never had unsupervised internet, but man, that was the best skill I ever taught him.

Fighting the school system for an IEP

Danielle: A big deal when we have an ND kid is learning how to navigate the school system, and this will probably be another podcast. We’re actually going to bring Dr. Jessica Hicksted on with us, who was part of the summit, to talk about this. But learning 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, because if your child has anxiety about academics, they are not academically fine, navigating that with a school system is really, really difficult.

Co-host: One hundred percent. It’s horrible. And I say that as someone who was a teacher for 15 years. I was a high school English teacher in a low socioeconomic school for eight years before I got my master’s degree and my special ed certification and went into behavior modification. Even as a teacher working in a federally mandated department for behavior modification, teaching a large district how to implement positive behavior intervention, 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. I was nice. I took all of the steps. I went up the chain of command. I did everything you’re supposed to do, because I know a lot of school systems are extremely defensive and want to argue. It took forever, and it ended up leading me to homeschool my kids. I was able to get them on an IEP before we did that, but it was a huge fight, and the school started taking it out on my kid. There was a definite frustration when they had to do an accommodation for her.

I have a problem with that. I’ll say this to every educator and every parent: if you can’t give my kid an accommodation without being nasty about it, just don’t talk to my kid. We’ll find another classroom. That doesn’t happen everywhere, but I hear so many parents talk about the fight to get their kid on an IEP, or to get their kid tested. When I first went in, I was just asking for support: “She’s having these issues. Have you noticed anything in the classroom? No? Could you maybe watch for it so we can compare notes?” I just wanted us to be on a team together. And the more pushback I got, I very quickly became labeled “that mother.”

Danielle: Oh, I got labeled “that mother” by, I think, his second week of kindergarten. To the point where when I showed up at the school, they would have the school resource officer show up. And I’m like, who are y’all worried about? I never acted out. I never raised my voice.

Co-host: They had to show force. Try to keep you in your place. So here’s what I did. When they pushed back, when they would not take care of my child the way they are legally required to under the IDEA law, which is a federal mandate, I contacted the district office. Things happened very quickly after that. My kid got support. But again, they resented us. So when she completed fifth grade and it was time for middle school, that’s when we decided to homeschool. And 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 support in the classroom, but they’re being bullied socially.

Danielle: My husband and I chose to homeschool my son because he was bullied. They put him in speech, my kid who spoke in perfect sentences under a year old, they put him in speech to teach him how to say the letter S. Why did he need speech? “Well, he doesn’t talk like everybody else.” Everything was an argument. I was that parent. I was that parent enough that they reported me to CPS to try to teach me a lesson.

Advocates, lawyers, and support for the parent too

Co-host: This is why, for parents that have questions about the process: there are so many parent advocacy groups on social media. Not all of them are good, but a bunch of them are. There are 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, and they will connect you with your local advocacy group, so that you can have an advocate at every teacher meeting, every IEP meeting, everything. They are fantastic, amazing resources. It’s going to be a fight.

Danielle: And if you are ND too, make sure that you, as the ND parent of an ND child, whether you’re fighting with the school or not, get support. Something people forget is that you’re not just little Mikey’s mom who has issues. You need support to get the support your kid needs.

Co-host: Absolutely. Regardless of whether you’re neurotypical or neurodivergent, being the parent of an ND child means you need support, because these children are going to challenge you. They’re going to ask questions, frustrate you, have problems that you literally cannot solve or don’t know how to scaffold. And you need people to vent to. There are lots of emotions we have as parents that are very unattractive, that we do not want to vent onto our child, or even our spouse. But sometimes we just need to tell people, “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. There are all these things we’re really not prepared for, but we can help each other with.

Danielle: And understand, a big unmoderated social media group is rarely the best place for this, because those groups are highly unmonitored. Really find something better. There are forums, there are chat spaces, there are communities for parents like us. We have an online community where we have space for these discussions, and we’re definitely not the only one. I encourage you to find the one that’s the right match for you and find a tribe of people. And I do use the word tribe, because we should be operating in small, tight, supportive communities, and we just don’t have that in our world, especially in the US. Other countries have this, and I find that so cool. We don’t have the space we need to find people we can talk to.

Permission to have terrible days

Danielle: And I’m going to 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 candy 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 everyone is alive at the end of the day. If you don’t get a bath in with them today, oh well. It’s fine. Life can happen without June Cleaver style parenting every single day of the week.

Co-host: Because the stories people tell, “oh, she’s just able to do everything, they’re such good parents,” I’m going to tell you, that is the ESPN highlight reel. That is a social media clip. It’s selective. It is a performance piece, and it cannot 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. Not every day is a gold star day. Most people live in the bell curve. We live at the 70 percent mark of the bell curve, skating through with a C average on everything we do, because that is maintainable.

Danielle: I often say my son is lucky to be 26. There are days he is lucky he survived. There are days I’m lucky I survived. There are days 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. And it’s okay. As a parent of an older ND child, I can tell you a million success stories about what an amazing adult he is. I can also tell you why he’s the biggest goofball I have ever met in my life, today. Tell me what version of parenthood you need to hear, and ask for the bad version if you need it. Because I can tell you about the day I sat in the middle of the living room while he was having a meltdown, I don’t even remember what this particular meltdown was about, and I just sat there and sobbed, because in that moment I hated 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, get them to behave, successfully navigate all the things we expect children to navigate.

Co-host: Life will be okay, even if all you accomplished today was waking up, eating Cheerios, and going back to bed.

Resources: books, behavior tools, and blue plates or red plates

Danielle: Our goal is to provide you with resources, so if you’re struggling, I don’t want you to struggle by yourself. Start with a search, it’s generally the best place to start, though not where you’ll end up. Send us a message. If we are not the right community to help you, we will help you find one. If you need books to read or channels to watch, the amount of resources we have between us is kind of insane. I mentioned it earlier in this episode: Carol Stock Kranowitz wrote The Out-of-Sync Child. If you have an ND child, whatever their support needs, that book saved my life as a parent.

Co-host: And we will all tell you we have a book that saved our lives as a parent. So many books. And now there are so many channels and so many places to learn from, resources that didn’t exist in the 90s and early 2000s, when the internet was still pretty unhelpful. You can get the support you need, and even if we aren’t it, we will, for free, help you find the right resource for your situation.

Sometimes our lives lead us to places where we can help other people. When I was working in a large district’s behavior department, I got the chance to do extensive training with Dr. Laura Riffel. She is known as the behavior doctor, and she’s someone districts bring in to teach tiered intervention and positive behavior intervention. And here’s a resource I put out to people all the time: pbisworld.com. It’s a website really built for teachers, but as a parent, you are a teacher for your child. If your child is exhibiting a behavior and you don’t know where to start, go to this website. It has behaviors listed, you click on one, answer a few questions, and it gives you a list of interventions. There’s tier one, and if those don’t work, tier two, then tier three. These are also things you can share with your school district and your teachers, because not everybody knows about this.

And if you ever have a chance to hear her speak, she’s amazing. She teaches you things we really overthink. Like, if you tell your child to set the dinner table and they say, “No, absolutely not,” now you have defiant behavior and it becomes a battle of wills. Instead, she says, ask, “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. Kids have a need for autonomy. They need to be in charge of something. So we help them find autonomy by offering choices. I am thankful every single day that I got to do that training, because now, as a neurodivergent coach that helps parents and kids and even adults, this stuff works with adults too. 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.

Danielle: There are so many ways. And you know your child the best. Be your child’s advocate. Get support for that advocacy if you need it. And find support for yourself, because if you are an ND parent, definitely get support, because your own executive dysfunction, RSD, all of those things are going to be woven into everything. I don’t want to see you struggle like I did, 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. You can DM us, you can email us, we’re really easy to find, and we can help you get the support you need. I hope this episode helped. If you got anything out of this, let us know. We want to hear all about it. Leave us a review. I hope you have an amazing day, and that you find what you need for your kid today.