It’s all about “the coat.” This is one of those parenting moments that changed me as a person. Parenting neurodivergent kids takes next-level perspective, when all we want to do is get out of the damn house! The Extreme Kids community was worth the wait.
If you haven’t read Part 1: How My Neurodiverse Family Found a Space Where We Could Be Ourselves, please do that first. This is a continuation of the story.
My first attempt to visit Extreme Kids, it was winter
A Sunday. Just the two of us. I know it was winter because it was all about the coat. The one he had worn the year before without complaint. It was still a little big, new, and cozy warm. But it had snaps.
As soon as he learned to talk, Ocean became his own best advocate. “Stop singing!” “No buttons!” This request was tough. It included snaps and rivets. That ruled out half his wardrobe, especially the adorable jeans and overalls I loved to dress him in. I still scour online stores for drawstring jeans.
His new occupational therapist was working on these “sensory aversions” with him, and supposedly making progress. To me, though, things seemed to be getting worse, not better. He cried when he walked on grass or sand. He screamed when our plans changed. His epic meltdowns weren’t fading, and now he had learned to hit and kick me. I was digging deep to scrape the last remnants of patience from my gutted reserves.
He cried when we got ready to leave the house. At preschool, he cried when they got ready to go. Because of the coat. I didn’t yet understand sensory aversions or sensory processing challenges. I didn’t know what to think, and would shout (to no one in particular) things like, “He's not getting a new coat! It is perfectly fine! He wore it last year with no issues, it still fits, and it was expensive!”
I was confused and worried out of my mind.
I was desperate to find other parents who understood what I was feeling. I didn’t have another coat for him and it was cold out. So, I dug in my heels. We would not go to the fun “Open Play” unless he wore his coat.
At that point, I had no leverage. I was the one who wanted to go, not him. He had never been there, and didn’t like going anywhere new. He was fine with not going. It wasn’t our first or last power struggle, but it was memorable, because I really wanted to go, and he won. We didn’t end up going anywhere. Eventually, I just sat on the couch and cried.
He saw me crying and I couldn’t hide it or explain it.
A sweet habit Ocean had at that age was to laugh if he saw someone crying. I’ve always known that this wasn’t sinister, or “lacking empathy.” It was actually his way of trying to make the situation better. To cheer you up. But it hurt like hell, when I was sad and hopeless, to have my kid laugh in my face. Some things he does still hurt my feelings, no matter how rationally I understand that it is the differences in our neurology skewing our communication.
Not long after that, a parent from that online group gave us a nice, nearly new coat with just a zipper, no snaps or buttons. This mom didn’t need to ask why my kid couldn’t tolerate his perfectly good coat. She understood that my child didn’t just need firmer parenting. No one told me not to let him get away with it.
The new coat really did solve the problem!
We actually made it to Open Play at Extreme Kids the next time we tried: the day after he got his new coat. It was like coming home, if your home had a ball pit, swings, beanbags and other parents to talk to who ‘get it’.
We walked into the school, past a laid back security desk, followed the signs and found the door. I put on my brave, social smile, and kept calm so Ocean would be. We were welcomed like old friends, and a smiling volunteer showed us where to put our shoes and hang our coats. Two classrooms were converted into a big space with a sliding wall between them. One side for the snack table, arts and crafts, and other toys. The other side, a sensory gym, with all kinds of wonderful playground equipment on steroids.
Unconditional acceptance exuded from the staff and volunteers.
From the start, I didn’t have to worry about explaining behaviors like flapping, bouncing like Tigger, or ignoring adults’ polite questions. I don’t remember much hesitation, if any, on Ocean’s part. He was soon swinging, climbing, bouncing and playing.
It took me a bit longer to settle in. I played with him and observed the other parents. There didn’t seem to be a lot of hidden rules. Eventually I melted into a beanbag and let him explore. Casual chats among parents were short, since all of our kids were high maintenance in one way or another.
I remember bits of conversations. Caitlin, the angelic, tattooed Executive Director, had this easygoing way of introducing us parents. She helped us realize the benefit of being there for each other. “You should talk.” And we did. It wasn’t forced. I didn’t have to explain missed milestones to these parents, their kid wasn’t doing that either. We had things in common that our old friends didn’t know anything about.
We decoded the alphabet soup of special education for each other.
We swapped resources, lawyers, and horror stories. We offered advice only when it was requested. We laughed together. In time, they became our newest family.
Here’s Part 3…
In the next and last installment of this story, I’ll share Ocean’s thoughts about that time, buttons, and his sensory issues.
Why a "Perfectly Fine" Coat Can Be Torture if You Have Sensory Aversions
It’s all about “the coat.” This is one of those parenting moments that changed me as a person. Parenting neurodivergent kids takes next-level perspective, when all we want to do is get out of the damn house! The Extreme Kids community was worth the wait.
A version of this story was first published at MUTHA Magazine, but I’ve updated it lots.
Did you see/hear? On request, I’ve started recording audio versions of my posts!
Thank you so much for part two of how your neurodivergent family found a place where you could be yourselves! As the grandmother of a Nuro divergent child, I get only slivers of the pain and slivers of the joy his experiences have brought into the world. Thank you for giving me a fuller picture. So moving and so useful in developing my empathy.