Published on February 7th, 2019 | by Kate Lynch1
On Extreme Kids: Finding A Space to Be
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. Somehow we aren’t overwhelmed, overstimulated, or overtired. 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.
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.
Despite my desire to be open to whatever was offered by the universe, I did have an expectation of what parenting would be like. I teach parent/baby yoga 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. Nights felt impossible; I remember fantasizing about 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 services began at thirteen months. At that point we insisted that he was simply “low tone” and 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 actually “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 it.
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 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 find someone who my kid could play with, or at least next to.
Eventually I did find Ocean described in a parenting guide. 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!” The title was Quirky Kids, and 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, I found an online parenting 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, PS 15 in Red Hook, 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.
Our first attempt to visit, it was winter. A Sunday. Just the two of us. I know it was winter because it was all about the coat. The Land’s End 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.
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. 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 or explain it.
A sweet habit Ocean had at that age was to laugh if he saw someone crying. I knew then, and still know now, 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.
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. One side for the snack table, arts and crafts, and other toys. The other side is a sensory gym, with all kinds of wonderful playground equipment on steroids.
From the start, I didn’t have to worry about explaining behaviors like flapping, bouncing like Tigger, or ignoring adults’ polite questions. Unconditional acceptance exuded from the staff and volunteers. 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 Cassaro, 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, swapped resources, lawyers, and horror stories. Offered advice only when it was requested. We laughed together.
And in time, they became our newest family.
Were there kids there whose needs far surpassed Ocean’s, and likely always would? Yeah. There were some kids there who couldn’t talk, had little control of their bodies, had a team to help them play. They deserved a safe space to play as much as any kid. Did Ocean ask questions about those kids or embarrass me in some way? Not as often as you might think. Did I welcome those conversations when he initiated them? I really did. I was learning acceptance, too, and talking about it with him helped me confront my own implicit bias and look through the lens of my best self. I was learning about disability rights. I was slowly becoming an effective advocate.
Sometimes, another parent would look curiously at my son, as if to say, “Why’s he here?” When I shared his diagnosis, they would say things like, “Really? He’s so high functioning!” They knew nothing of the work he had done to get where he was. There were times that I felt like an imposter, until one of Ocean’s meltdowns justified our presence. There were times that I guiltily downplayed Ocean’s strengths and successes, like when he was accepted into a highly regarded specialized ASD program for kindergarten. At first I felt that I couldn’t tell my friends there. I also told stories about his challenges that would probably embarrass him now. They were a sort of currency. I was raw, and looking for validation. Eventually, I learned to say “We have our good days, and we have our challenges. Tell me about you.”
One day, a mom arrived with two boys. The younger, about five, seemed “typically developing” and was helpful and well-behaved beyond his years. I heard her say “he gets a chance to be a kid here.” Siblings and friends are welcome at Extreme Kids, and I can’t imagine how it would work otherwise.
I got the feeling that this mom was really struggling; she had to be on top of her older son constantly, unable to relax. It could have been an especially hard day, or it could be that this is her life. Some parents know that with their kid, taking a break isn’t an option. Staying vigilant is the easier choice when you know it will be harder to deal with the repercussions, whether that’s dysregulation, self-harm, or harm to others.
They didn’t stay long. She let her younger son play for as long as she could. He was having fun with the toy cars and the fire truck. A volunteer was playing with him. His mom was trying to calm her older son by holding him close. She was getting ready to go, and I could feel her hard shell, the one I know too well, that tough and unapproachable exterior we need sometimes (in order to avoid sobbing on our couch in front of our kids).
I asked her anyway, “How can I help?”
Her energy shifted. She softened. She accepted. I brought over the shoes. We introduced ourselves and chatted a little. It was short. It was nothing. It was everything. It was understanding.
PSA: If you want to support an overwhelmed parent, “How can I help?” is really the only phrase you need to know. It isn’t necessary to know what to do. Please don’t ask, “Do you need help?” All New Yorkers are inclined to decline. If you’re wondering whether a parent needs help, they probably do. However, they may have a good reason not to accept the offer. Maybe a stranger would only panic their child more. Don’t take it personally. If you try, and get back, “No thanks,” or “I’ve got this,” you can leave with a smile and go on with your day, knowing that your offer was far braver and kinder than a silent stare. Try this, and you can make any space inclusive.
Ocean is getting a little big for Extreme Kids, but the lessons we learned there, non-judgement, empathy, perspective, the power of play, have embedded deeply in our family. He still won’t wear buttons. Jeans without snaps or buttons are harder to come by as kids get older. He still remembers how, at his therapeutic Pre-K, they had a “desensitization protocol.” In other words, they worked with him gradually to get him used to buttons. He brought it up recently, and described the misery he felt. It gave me an opportunity to apologize. Apologizing is one of the few parenting strategies I’ve perfected. One thing all parents have in common is, we make mistakes. I hope as parents we can learn to support each other more and judge less.
Now, I focus on bigger things than buttons. Now, I know it’s a trusting relationship that matters. The kind of acceptance we learned at Extreme Kids. I can’t know who we would be as a family without this community, because we were lucky enough to grow up within it. I do know how lonely I felt before I found it. Who cares if my son wears elastic waist pants to his own wedding? I just want him to love and be loved. Now, I believe that it will happen.
Hear more from Kate Lynch on her new podcast, Healthy Happy Yoga.