PITTSBURGH — Kelly Cain remembers the joy of having someone else serve her a cup of coffee at the brand new IHOP in Robinson about 14 years ago.

Since her son, Clayton, showed signs of autism spectrum disorder, and was subsequently diagnosed, she’d heard rude comments, endured stares and felt judged, effectively dividing her family of five into two groups — one that stayed with Clayton and one that ran errands and ushered the family’s two older daughters to events.

But when the area’s new IHOP opened, the Cain girls wanted to go. And something shifted.

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Despite 7-year-old Clayton’s tendency to eat while sitting under the table — an attempt to avoid the sensory stimulation of eye contact while eating — Cain and her husband vowed to go as a family of five.

Shortly after their meals arrived, however, one of the daughters vomited all over the table. While tending to her, Cain instinctively glanced at Clayton, who sat contentedly beneath the table.

After checking her daughter’s temperature, looking at her throat and hurling question after question, making sure she was physically well, the middle school-aged girl finally gave in: “Fine. I was eating too fast because I was worried Clayton was going to have a meltdown, and I just wanted to finish my food.”

Cain was stunned. Then, she cried.

“In that situation, Clayton was fine, but my other kids weren’t. I knew the stress on my other kids was great, but I didn’t know it was that great,” she said. “I just thought, ‘Wow, we’re never doing that again because who was that really for?'”

She realized that, had they been in a sensory-friendly environment, or one where the staff was trained to understand neurodivergent people, she could have mentioned to her girls, “They’re trained in autism. You can relax. If he screams, they get it.”

That’s why she created those environments.

In 2017, Cain founded the Autism Caring Center, where the mission is to support the person with autism (or “autistic person,” depending on their preferred use of language) and their families.

“A lot of the programming out there is for individuals with autism. It’s not for the whole family, and the whole family needs support,” Cain said. “This diagnosis is so unique and diverse that the families need to connect, because sometimes the individual is getting services and making improvements, but the family feels isolated or split up.”

As a result, the Center, located in Canonsburg, holds whole-family events, such as sensory-friendly movie nights.

“Going to a movie was almost impossible,” Cain said. “But having a movie with the lights up and the sound down, the whole family can come to that.”

Memorial Day picnics are a yearly offering, as Cain’s own experience taught that food and games need to be ready from the first minute so families can get the most out of them before fatigue or overwhelm takes over.

The Center’s Summer Fade Away Festival is held each August with live music, food trucks, activity areas and other vendors — all free, and all with special needs in mind.

But the Center’s newest program, Siblings Social Club, speaks to exactly what led Cain’s daughter to eat so quickly.

Held once per month, the offering welcomes kids ages 10 and older whose sibling has special needs. There are games, snacks and other activities, but those are just the vehicles to more important work.

“It’s validation,” said Meagan Brown, board-certified behavior analyst and applied behavior analysis professional development coordinator for The Children’s Institute of Pittsburgh. “Having been part of sibling workshops before, I’ve heard these conversations. You can see the validation they feel when they talk about experiences with their siblings, and someone else in the group says, ‘Yeah. Me too.'”

Swapping those stories might also help to address important birth order dynamics among families with children on the spectrum.

“If the older child has ASD, the younger kids don’t necessarily understand what’s going on,” said Gary Swanson, an Allegheny Health Network psychiatrist who treats children, adolescents and young adults diagnosed with ASD and other disorders. “They don’t necessarily understand why their older brother has meltdowns or why the family has to do things differently. It can be much more difficult for those younger kids.”

While the Autism Caring Center might have the most robust catalog of family-inclusive events, a new kid on the support organization block, Sophie’s Potluck, is finding its own niche.

Created by Amy Hart, whose 14-year-old daughter Sophie has autism, along with John Novogurski, whose 7-year-old son has ongoing challenges originating from a global developmental delay, they too sought ways to unite families whose day-to-day experiences also exist on a spectrum.

“It’s hard for us to go somewhere as a family. I don’t enjoy those events. I don’t relax,” Hart said. “I just watch Sophie to make sure she’s having fun, and if she’s not, I’m thinking about how to get her out of there. But Sophie’s Potluck events are completely judgment-free.”

Hart, an educator from Bethel Park, and Novogurski, a software developer from Canonsburg, plan monthly meetups for families of people with special needs and neurotypical friends, in conjunction with local businesses.

With events such as bath bomb-making at Bombash Botanical Skincare Co. in McMurray, a private class at the Pittsburgh Zoo, build-your-own pizzas at Party Line Catering Deli in Baldwin, tie-dye projects with Splat: A Make & Take Art Studio in Bethel Park and ultimate frisbee with the Pittsburgh Thunderbirds, these families add to their catalog of experiences together without the threat of side-eyed glances or exasperated sighs.

“At the zoo, we had someone on the floor. Sophie was jumping up and down, like earthquake jumps. Somebody was crying. And nobody batted an eye,” Hart said. “I just thought, ‘This is it!'”

© 2024 Pittsburgh Post-Gazette
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