Rocking the Spectrum

Lyla Novakowski, owner, We Rock the Spectrum kid’s gym in Fenton


A mom carries a sweet-faced blond toddler into We Rock the Spectrum, hoping to celebrate.

“Happy birthday, my dude,” says the Fenton gym’s owner, Lyla Novakowski. He pulls back a little. “Oh, I’m sorry. That was too much. I get it. I have a son you can’t sing ‘Happy Birthday’ to.” She continues speaking, relaxed and gentle. “I know it’s weird when you go to a new place. Take your shoes off and get comfy. If you need me to bring some toys out here while you acclimate, I can.” She brings over a terrarium with a real, beautiful butterfly inside, and the little boy’s eyes shine. Two minutes later, he is in the gym playing—no coercion, therefore none of the upset I had braced for.

“Both my kids are on the spectrum,” Novakowski says. “I’m on the spectrum.”

There are 150 of these gyms around the country, each a little different. She learned about the place when she brought her boys to summer camp here: this was one of the few places that did not see her firstborn’s diagnoses on paper and say an immediate no. “On paper, he’s intimidating,” she admits cheerfully. “Cerebral palsy, autism level three, intellectual disabilities. But when you meet him, you’re like, Oh, he’s one of the most wonderful people on the planet!”

She found the gym just as the previous owners were about to sell. Since taking over, she has remade it in delightful ways, even festooning the metal girders with garland and softening the overhead lights with cloud-printed fabric. “Lights hurt,” she explains. “A lot of people don’t realize how much. And the fabric solves the noise problem, too—the humming—and reduces the heat.”

She brings me into the calming room, which is dim and filled with soft things and a sweetly gurgling, color-changing bubble tube. “The sound doesn’t bother kids?” I ask.

“The goal isn’t to have no sound at all,” she explains. What assaults the senses is too many sounds at once, or sounds too loud or at too high a frequency. Once Six Flags invited kids for a special Autism Awareness Day, she recalls, wincing, and the train whistle was so shrill, a little boy who adores trains had to spend most of his day in the sensory room. Awareness sometimes skims the surface.

Novakowski picks up a board of hexagon shapes that change color when you touch them. “When you’re having a sensory overload, it’s hard to talk,” she explains. “When someone is having big feelings, I’ll ask, ‘What’s your favorite color?’ Or—” she picks up a PEC (picture exchange communication) board—“they can point to what they need.” With her finger resting on the image of a weighted blanket, she asks, “You want to know what it’s like to have a sensory overload?”

I hesitate, not sure I do.

“It’s like chewing aluminum foil. Times ten.” My shudder is involuntary. “Now try to do some math while you are feeling that,” she challenges me. “And kids have zero idea what is causing the overload; it might be the tag on the back of their shirt. My theory is, that’s why there’s the disconnect with words.”

She would do away with tags altogether. Also thick bungly seams in the toes of socks. She hops onto the standing swing, then urges me to try. It helps with vestibular balance but mainly is really fun—as is the silken hammock swing, and the bolster swing, and the Superman swing that can be swung a hundred different ways….

I return, elated and dizzy. “I didn’t start talking until I was four,” she says. “They thought it was because I was around so many languages, because I grew up in Rome. I tiptoe walked, and they thought I wanted to be a ballerina. I had this immense pain, and I would smile through it—we call that ‘masking.’ So for thirty years, I had these awful panic attacks that lasted hours. You don’t want to upset people with your feelings, so you hold them in—and you can only hold so long.”

She was not diagnosed until she was forty. “First, they thought I was bipolar, and the meds just made it worse. Then they said OCD, and those meds made it worse.” So did cognitive behavioral therapy. So did talk therapy. Acceptance and commitment therapy, a form of mindfulness that embraces all thoughts and feelings, finally helped. “And now that I’ve come out of the autistic closet, everybody says, ‘Oh, yeah, that makes sense. We saw that.’”

A mom and dad come in with their young son, thrilled to find this place. Novakowski checks them in without a single medical question, just wants to know what kind of music he likes.

“We never ask, ever,” she tells me later. “To me, that would be disrespectful.” Her dream is to make this a third place for the entire community, with tons of volunteers helping. Neurotypical kids already join their friends here, and kids who have aged out still come because they still feel like it is their place. Next she wants a zipline that will hold 220 pounds, and maybe board games for the older kids and adults….

National funding is available to help parents pay if their child has cerebral palsy or a developmental disability. “But how do you know,” I ask, “if you’re not asking questions?”

She smiles. “Spicy, not spicy. People talk to me.”

She uses the phrase again later, describing how she fell in love with her brilliant, also-on-the-spectrum husband: “Spicy hangs out with spicy,” she reminds me. “You can’t have a taco without cumin, but cumin on cheesecake does not belong. And that’s okay. But who wants a world without tacos?”

Novakowski and her husband were told that their first son, Xander, would never walk. He walks just fine. But things take a little longer for him, while his younger brother, Joey, started talking when he was three months old and can read and do math at age four. Joey runs around the world at light speed, though, “so there are all these great places in the city but nowhere I can take the boys by myself,” she says. Except someplace like this.

A dad is ready to go, but his two-year-old refuses to relinquish one of the gym’s toys. Novakowski tries a lollipop trade, but he is onto her. “Your dad’s gonna bring you back soon?” she asks. “Just take it. I can’t let little ones cry.”

They leave, everybody smiling, and she shrugs. “Love. You don’t have to have a disability to need it.”

As she goes to tidy the train table, I read the motto on the back of her t-shirt: “Finally a place where you never have to say I’m sorry.” Later, I hear the mom who just discovered the place bubbling over: “In other places, I’m always saying, ‘Oh my God, I’m so sorry. I felt so comfortable here.”

Shyly, her son thanks Novakowski for his dye-free lollipop.

“Your words are so beautiful,” she tells him, warm and expressive, nothing like the stereotype of an adult on the spectrum. Make room for difference, and it softens.

“I’m finally in a place where I don’t have to pretend to be someone I’m not,” she says. “And when I need to take five, I can take five, and everybody understands that Miss Lyla needs to take five. I never have to push through.”

I think of little Lyla, whose hands were tied to stop her from flapping them at times of anxiety. What would she make of this place? “I don’t think that way,” Novakowski says simply—making no attempt to fake it and offering no apology. I rejigger the question: do any of the kids remind her of herself at that age? “Yes,” she says, “all the time. And I watch them swinging, and there is such joy.”


Read more by Jeannette Cooperman here.