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How My Neurodiverse Family Found a Space Where We Could Be Ourselves
What I love most about Extreme Kids is the emotional space we are given to be ourselves.
We hear the glee and upset in dozens of voices, the trampoline squeaking and the ball pit rustling. We see primary colors, swinging swings, and bouncing children. A random soft ball glances off us as we play. We spin on a tire hanging from the ceiling. We land on giant beanbags. Crawl through tunnels. Spin in, pop out of, or hide inside multi-colored foam barrels.
Somehow we aren’t overwhelmed, overstimulated, or overtired.
Climbing up the ladder, there’s a loft for hiding, reading, or playing your ukulele. There’s a slide with padded rollers, providing fun sensory massage. Hidden in the corner, a cozy reading nook.
For us it’s an indoor paradise. But the physical space is not what I love most. It’s the emotional space we are given to be ourselves.
It is also what is absent: dirty looks, unwanted advice, and misunderstanding.
Extreme Kids’ mission is clear from the first welcome at the front door. Take off your shoes. Relax. We’ve been through this before. This is a judgement-free zone. You belong here. It’s okay to be yourself. Especially if simply being yourself usually draws stares or rude comments in typical play spaces.
How it started:
Despite my desire to be open to whatever child was offered to us by the universe, I did have an expectation of what parenting would be like. I taught parent/baby yoga for years, and have watched a lot of babies grow up. They all go at their own pace. I thought I knew enough about child development to trust my son to follow his own timeline. We were overjoyed with him and, while overwhelmed, we had resources. During the day he was all energy and smiles and wiggles and even animal sounds.
We were, are, and always will be, head over heels in love with our boy.
But, at some point I realized that he wasn’t following any trajectory. He needed help to figure out how to sit up, crawl on all fours, pull up to stand, and hopefully, eventually to walk. But that wasn’t all. He cried a lot, and didn’t sleep much. Nights felt impossible; I remember fantasizing about getting 3 consecutive hours of sleep.
When Ocean was about a year old, we would go to our neighborhood playground. He would drag himself around on his belly with his arms. Until he started boycotting buttons, rugged overalls were my choice. He destroyed anything else. Other parents would laugh out loud as he “commando” crawled around the playground, completely ignoring other humans and making a beeline for the nearest stroller wheel to spin. I would glare at those parents, even though I knew they were both innocent and ignorant of the hurt I felt. Bitterly, I wondered what was so cute about it.
He couldn’t get onto all fours to crawl, much less walk.
But he was really fast! I had to run in front to clear the ground of lethal objects in his path. Forget helicopter, I was a snowplow parent. I consoled my mama ego that their children may be running and fighting with each other, but probably not able to sing the alphabet backwards or build intricate geometric shapes. It takes all kinds, right?
I self-referred Ocean to Early Intervention, and his services began at thirteen months. At that point we insisted that his challenge was simply “low muscle tone” and he only needed some physical therapy to catch up. Looking back, I remember the special education evaluator who came to our house halfheartedly pointing out characteristics that were “red flags,” like spinning the wheels on his cars rather than pushing them along or making beeping sounds, but we weren’t ready to hear that.
I still thought, “if I just do all the research, if I just drag him to all the therapy appointments…” What? What did I think? That my life, my family, would return to “normal”?”
None of us in my family had ever been normal, nor aspired to it.
We’re a quirky family, and proud of it. Art, rebelliousness, and nerdiness run rampant through both our family trees. My divorced mom was at the cutting edge of feminist art. I grew up wearing weirdness as a badge of honor. However, as a new parent unsure why none of the books mentioned certain exhausting behaviors, I was no longer into being a loner. I wanted to talk with other parents who understood how it felt to read or hear about milestones that never happened.
Maybe I could find someone who my kid could play with, or at least next to.
Eventually I did find Ocean described in a parenting book. Entitled Quirky Kids, the book had been recommended by a neurologist, one of a string of doctors who gave us no answers aside from “Your kid is complicated!” My epiphany came in the form of a single paragraph overview of Asperger’s Syndrome: “Reasonably normal language development… impaired social interactions, repetitive behaviors, preoccupations or interests, motor delays or clumsiness… their behavior is just strange enough to make other kids uncomfortable… Many Asperger’s children are infinitely more comfortable with adults than with other kids.”
A tough, confusing, and isolating year and a half later, after neuropsychological testing and an autism diagnosis, I found a local online parent support group with hundreds of members. It felt like a lifeline. Ocean was now almost three years old; and I knew he needed more help. We all did.
We had our diagnosis. Now we needed more support.
We finally landed at Extreme Kids. Housed within a public school in Red Hook, Brooklyn, this nonprofit with a commendable mission offers after school and weekend programming to special needs families regardless of their ability to pay. The vision of its founder, Eliza Factor, is “a ball pit in every borough!”
At first, I was suspicious. I was defensive about Ocean’s behavior. Joining a group of parents of children with “special needs” was still kind of gut wrenching. I have rarely become a member of anything.
So, what did I think? Certainly not that I had “found my tribe.” But I realized that I needed this place, which they call “a space to be,” more than my son did…
In the next installment of this story, I’ll tell you about “the coat.” Make sure you’re subscribed so you get it right in your inbox as soon as it comes out.
Stay tuned for Part 2 of 3…
A version of this story was first published at MUTHA Magazine, but I’ve updated it.
Did you see/hear? On request, I’ve started recording audio versions of my posts!