How the one family used running to create their version of “normal.”
Robyn Schneider’s identical twin toddlers, Alex and Jamie, were happy, energetic and playful little boys. Until one day they weren’t. In retrospect, Schneider realized the changes, seemingly subtle at first, happened over several months. Playfulness was replaced with inexplicable meltdowns and repetitive behaviors. The boys stopped responding when others tried to engage with them, and Alex and Jayme were largely silent.
The Schneider family’s life-changing diagnosis—“language delay with autistic characteristics”—came when the boys were 21 months old. It was 1992; before many were aware of autism and before the Internet, online chat groups and forums offered explanations and resources with a few keystrokes. Living just outside of Manhattan, in Great Neck, New York, meant the Schneiders had access to more services, knowledgeable caregivers and options than many. Yet their journey was still isolating and full of unknowns.
Genuine happiness for Alex and Jamie was replaced by periods of calm and enjoyment amidst their daily challenges, anxieties and compulsive behaviors.
Until they were 15 years old and discovered the joy of running.
During the boys’ early years, Schneider consulted with specialists across the country and even in England to find treatments and people nearby—or at least on the East Coast—who might be able to help. It was Robyn’s dad who first heard about applied behavior analysis (ABA), an emerging and promising treatment for autistic behaviors. ABA has since become a standard intervention for those on the autism spectrum, but in the early 90’s, Robyn and Allan were largely on their own in assembling a team of therapists and caregivers to help their sons.
They turned their home into a therapy center for the boys, and in 1995 opened Genesis School, a satellite to Eden II School on Staten Island, specifically for those with autism. School kept the boys engaged during the day, but the after-school and evening hours, when most children would do homework, play with friends or participate in sports, were an opportunity to explore other outlets.
As Robyn came to realize there was no cure for Alex and Jamie, her focus shifted to finding what made them happy. Since the boys were (and remain) non-verbal, they couldn’t express what they liked, but much could be discerned from their reactions to activities. Increased agitation or acting out were signs they didn’t enjoy something. Calmness, or even a smile, counted as positive indicators. They tried horseback riding, swimming, gymnastics, soccer, karate and basketball. While some activities were more successful than others, the boys’ love of exercise and its ability to help calm them became apparent.
Which is what led a family friend to suggest the Rolling Thunder Special Needs Program. Founded in 1998 to be an inclusive program for those with challenges, the Long Island-based running, walking and wheelchair organization now has over 200 members and is a member of USA Track & Field. The boys’ very first one-on-one runs with coaches resulted in a happiness and calmness that Robyn found hard to believe.
Alex and Jamie began running three times a week, and eventually began participating in races. Given the boys’ severe autism, finding coaches who could intuitively understand and work with them was difficult. And even though the boys are identical twins, they are unique in their approach to running, necessitating their own coaches.
“Alex is in another place when he runs, he looks absolutely euphoric,” Schneider says. “He also is fast, making pacing difficult. We call him ‘one speed only.’”
Jamie is more of a social runner.
“He likes to stop at aid stations and is especially intrigued by swishing, blond ponytails,” says Schneider, 58, now one of Jamie’s running guides. “Jamie has a ‘forever pace,’ and does not care about his time.”
Schneider and her husband both began running because of the boys. Allan, 62, was the first to lace up. Allan has MS, but discovered that running helped him feel better physically as well as giving he and Jamie their version of father and son time. Robyn began running at Allan’s insistence, as she was battling breast cancer. She had never taken the time to care for herself, but found a joy and freedom in running. As she progressed in both her recovery and her running abilities, she was able to share running and racing with her husband and sons, like a “normal” family.
At the age of 24, Alex and Jamie have accomplished more than many without disabilities. Between them, they’ve each run more than 150 races, including marathons (Alex ran a 3:14:36 PR at the 2013 New York City Marathon) and even a 50K for Alex. As much as running brings the boys, their parents and friends joy, it also brings challenges. Guides have to monitor their food and fluid intake, take off or add clothes as necessary, establish pacing and tailor training so the boys are prepared for races without becoming injured. The proof of success is their smiling finish line photos and walls full of medals.
This week, the Schneider family returns to run the Boston Marathon for the fourth time. Alex and Jamie run through the B.A.A.’s Athletes With Disabilities program.
“We are among those who have been so deeply affected by the bombing in 2013,” says Schneider who had just returned to the hotel room after watching Alex cross the finish line when the bombs detonated. Jamie and Allan were diverted at mile 22.
“The Boston Marathon achieved even greater reverence in the eyes of most runners, including us, because of that day, which is why we return with our sons.”
In addition to caring for her sons, running and advocating on behalf of those with autism, Schneider has written a memoir, “Silent Running: Our Family’s Journey to the Finish Line with Autism.”
“Even though my sons will never read the book, my inspiration was to leave a legacy for them,” Schneider says. “What I didn’t realize was how satisfying it would be to remember the past and see how far we’ve come as a family.”