A Safe Space for Every Kid to Play Freely Without Judgment or Stares
Part 3 of How My Neurodiverse Family Found a Space Where We Could Be Ourselves.
In which I learn about advocacy, apology, and accepting help. If you want to support an overwhelmed parent, “How can I help?” is really the only phrase you need to know.
This is the final installment of my Extreme Kids story. If you haven’t read:
Part 1: How My Neurodiverse Family Found a Space Where We Could Be Ourselves, or
Part 2: Why a "Perfectly Fine" Coat Can Be Torture if You Have Sensory Aversions, please go do that before reading on.
I was just starting to learn about neurodiversity and disability rights.
Were there children at Extreme Kids whose needs far surpassed Ocean’s, and likely always would? Yeah. There were some kids there who didn’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, and Extreme Kids provided that. Did Ocean ask questions about those kids? Not as often as you might think.
Did I welcome those conversations when he initiated them?
I really did. And I didn’t wait for his lead. I was learning acceptance, and talking about disability pride with him helped me confront my own implicit bias and look through the lens of my best self. I was slowly becoming an effective advocate.
Sometimes, another parent would look curiously at Ocean, 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 NYC specialized ASD program for kindergarten. At first, I felt that I couldn’t celebrate with my friends at Extreme Kids whose children were not a good fit for the program.
I told stories about Ocean’s 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 Saturday afternoon durning Open Play, a mom arrived with two boys.
The younger, about five, seemed neurotypical. He 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. 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 disregulation, 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. The 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?” Most parents, are inclined to decline. We’re socialized to believe we should be able to handle it all by ourselves.
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.
How it’s going:
Ocean is getting a little big for Extreme Kids, but the lessons we learned there, advocacy, 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 Ocean wears elastic waist pants to his own wedding? I just want him to love and be loved. Now, I believe that it will happen.
A version of this story was first published at MUTHA Magazine. Thank you for reading.
Did you see/hear? On request, I’ve started recording audio versions of my posts!
Has this story sparked any ideas in you? How can you create inclusive spaces in your community? Who can you reach out to for help, and who needs your support? Tell me your thoughts in the Comments below, in a Chat, or a Note. ;)
A quick note to let you know that if you have a child who struggles with getting off screens or with tech-related mental health issues, I highly recommend the upcoming Screen Time & Mental Health Summit! I’ll be attending!
It’s completely free to attend the summit and it starts Monday, May 15th.
“In my work with thousands of families, I've observed that… screen-related challenges are becoming increasingly prevalent. These challenges include difficulty getting off screens, loss of interest in non-screen activities, lack of exercise, anxiety, depression, irritability, social atrophy, using screens as a coping mechanism for stress and boredom, hours of unproductive time, and family conflict…
“To help families address these issues and use technology in healthy ways that support mental health, relationships, and well-being, I've assembled a team of experts at the intersection of tech, mental health, and child development.”
-Debbie Steinberg Kuntz, LMFT, Founder of Bright & Quirky
During the summit, the speakers will delve into both the positive and negative impacts of screen use and discuss evidence-based strategies to maximize the benefits and minimize the risks. Woohoo! Those are strategies I need.
To save a seat for the summit, simply click HERE, and I’ll see you there!