They're the childhood memories we cherish: A beach vacation with family, a ball game enjoyed from seats along the first-base line, a day spent riding a theme park roller coaster again and again and again. So easy for most of us. So incredibly challenging for children with autism and their families.
Many of these families fall into self-imposed isolation. Bryn Mawr's Carrie Stockmal - whose 12-year-old son, Jack, is autistic - told me it was sometimes easier just to stay home rather than risk a disastrous outing. "You're so on edge when you take your child out because, even if he's having a wonderful day, there's no sense of what he's going to do," she said. "It's very hard to suspend all worry. You can't have fun." There's also a fear of being judged. "They think it's a discipline issue," she said. "It makes things worse when they don't understand and give you the evil eye."
For the last five years, developmental pediatrician Wendy Ross has worked to change that. That's why CNN has named her one of its 2014 heroes, one of the "everyday people changing the world." The network will run a tribute to Ross and the other heroes at 8 p.m. Sunday. Donations made during the show will be matched by Subaru, one of the show's sponsors.
Here's how Ross describes autism for the uneducated: All snow is wet, cold, and white, but no two snowflakes are alike. Those on the autism spectrum have difficulties with socialization, communication, and behavior, but the disorder manifests differently in different people.
Ross' nonprofit, Autism Inclusion Resources, teaches autistic children and their families skills that make the world seem less scary. In the short term, she wants families to have fun and build memories. Long term, she wants to see children like Jack build on their coping skills, perhaps transferring them from the ballpark to the workplace, from a single plane ride to a lifetime of travel. She wants to build independent adults.
Ross also works with people who may encounter autistic individuals and their families. She educates stadium personnel, airline employees, and museum docents, making them aware of the challenges these families face.
"If we start early and lay down paths for kids in their minds and our minds and in the minds of the community, there's no telling where the pathways can lead," Ross said during a recent interview in her Bryn Mawr office. "Everyone should be included because inclusion benefits everyone. Even if you don't know someone with autism or care about someone with autism, it benefits you to help them find independence."
There's no shortage of tributes to Ross' work.
Jennifer Binder Le Pape of Wynnewood told me about her 13-year-old son, Alex, and his first football game. "In my wildest dreams, I never thought we'd make it to halftime," she said. "We were the last people to leave."
Philadelphian Derek Green said Ross prepared 13-year-old Julian for his first airplane flight, a dream trip to Disney World.
Stockmal described how Phillies personnel trained by Ross were happy to accommodate her family during a game when her son became agitated by the crowd: "They moved us to a different section with no one around, and it felt normal for five minutes, which is a miracle."
Miracles or not, Ross faces some challenges that could shut down her nonprofit.
With no staff, Ross devotes 40 to 50 hours a week to the organization - sometimes more, she said, because "I lose track of time."
Funding is limited. Ross estimates she's put about $20,000 of her own cash into it thus far, but that's not counting the fewer paying patients she takes so she can keep the nonprofit operating. Last year, one of her two sons made woven bracelets and sold them at his school to raise money for her. He pulled in about $150. When CNN ran a short piece about her a few months ago, viewers donated $3,000 to her program. "One of them was my mom," she said.
Though fund-raising is a standard nonprofit struggle, this isn't: Three months ago, Ross' 43-year-old husband, Michael, was diagnosed with Stage IV colon cancer. He has since undergone surgery and is receiving systemic chemotherapy. A more detailed course of treatment will be decided on in the next month or so. "That's probably going to change a lot of things in our lives," Ross said. "He'll need more. The kids will need more. We'll need more money, so I'll have to work more."
During our hour-long conversation about her work, Ross was serious, earnest, emphatic. Talking about her family made her smile. She described how 11-year-old Benjamin and 9-year-old Jacob enjoyed going to sports events with her and her patients, serving as "peer models" of correct behavior. They like her work less when she's mired in paperwork or planning, she said, because "that's time they're not getting with me. . . . But I think they're proud of me, which is nice."
She met Michael in medical school at Mount Sinai. She was drawn to him because he was a less conventional med student, who performed as a magician on weekends and who taught her biochemistry while juggling. Despite his illness, he recently completed an 8K race with friends. She had shirts printed for the runners with a semicolon on them, a reference to her husband's surgery. She said friends confided that they were worried they'd finish behind Michael even though he ran with a chemo pump on his body.
The couple have been best friends for 20 years, cohabitators for 19, and married for 17. "I feel very lucky," Ross said, "and when I say that now, people think I'm crazy." She strongly disagrees.