post by Caryn Mohr
By Robyn K. Schneider with Kate Hopper
Triumph Books, April 2015
I imagine that every Boston Marathon story is inspirational. Maybe it’s because I’ve seen how hard friends have worked to get there. Maybe it’s because Boston eludes me. I imagine that every person there overcomes obstacles to get to the starting line. A new book brings home that it can also be our obstacles that bring us there.
Perhaps this is true for many runners. We overcome challenges to run, but we also run to transcend our challenges.
Silent Running: Our Family’s Journey to the Finish Line with Autism, a new book by Robyn K. Schneider and Minneapolis-based author Kate Hopper, tells the true story of how the Schneider family found the healing power of running amidst adversity. The book takes readers from Alex and Jamie Schneider’s diagnosis of autism as toddlers to their first marathon finish at age 20. Along the way, with both parents facing their own health challenges, running became a passion for the entire family.
When Alex and Jamie run this April’s Boston Marathon, it will be their family’s drive to transcend adversity that brought them there.
Robyn and Allan learned of their twin sons’ diagnosis in the early 1990s, before autism was a household word, and were determined to find a cure. Both Alex and Jamie have the most significant symptoms of autism as well as obsessive-compulsive disorder (OCD), high anxiety, and intellectual disabilities. Even as adults, both men are unable to communicate verbally.
Holding onto the idea of the life they’d envisioned for their sons, Robyn amassed an extensive array of services for Alex and Jamie. Athletes will see themselves in her relentless determination and unfailing positive attitude. “…I kept pushing, kept searching for a cure. I filled each available moment of each day with whatever therapy or treatment might make a difference, might bring them back to us.”
Robyn and Allan already faced added challenges with managing Allan’s multiple sclerosis. As Allan said to her after the twins were diagnosed, “Rob, the way my MS symptoms are flaring up I could be headed for a nursing home, and you could be dealing with this on your own.”
Through an extensive home-based therapy program, and later a satellite school the Schneiders launched with other parents, the family learned how to support Alex and Jamie’s behaviors and help them learn. But over time, Robyn accepted that their conditions would always be a significant part of their lives. “There had already occurred in me a subtle shift, a slight turning away from focusing on their cure and recovery to focusing on their happiness. How, if they would never recover from autism, could I ensure that their lives would be full of joy?”
When the boys were 15 years old, a friend who’d worked with the boys suggested that Robyn and Allan bring them to a group run with the Rolling Thunder Special Needs Program, a Long Island-based running group for children and adolescents with special needs. Supported by coaches, participants have the opportunity to train alongside peers and participate in mainstream races. Robyn and Allan hoped running could help with the boys’ excess energy and anxiety, but there were risks. Both Alex and Jamie would require running guides to ensure they didn’t wander, and because the boys couldn’t communicate verbally, the guides would need to watch for signs of distress like arm flapping or vocalizing.
But even on their first run, it was clear that Alex and Jamie were natural runners. Even more, they loved it. In Robyn’s words, “When the boys came to a stop in front of us, they both looked euphoric, smiling like we’d never seen before.”
Running freed the boys from challenges they faced at other times. To both Alie, a natural fast runner, and Jamie, slower and steady at his “forever pace,” running gave an identity separate from their disabilities. To Robyn and Allan, running gave a community of special needs parents focused around something positive. “…Rolling Thunder and the boys’ running cracked something open in us. It made us consider once again our sons’ capabilities, their talents. We could sense their potential. Maybe they could sense it, too.”
Alex and Jamie began competing in mainstream races with their coaches, with Robyn and Allan cheering from the sidelines. The boys were more relaxed on days they ran, but meeting their needs around running was challenging. Alex developed extensive OCD rituals around prepping their running gear and cooler the night before a run, at one point putting away the family’s clean clothes before they’d been dried. Pacing Alex also proved difficult because he didn’t understand why a coach would want him to run slower than he could, and because few coaches could keep up with him.
When the family met Kevin McDermott, one of Rolling Thunder’s volunteer coaches, they found not only a runner fast enough to keep up with Alex, but a longtime family friend. Kevin saw Alex’s potential as a runner, and was determined to support him. At one point, Kevin paced Alex by running with a five-foot-long branch sticking out behind him, wiggling it to keep Alex’s attention and help him maintain a proper distance behind Kevin.
Kevin has now coached Alex through numerous races up to marathon distance, including a 3:14:36 at the 2013 New York City Marathon. “Sometimes people come into our lives and later we can’t imagine what we’d do without them. Kevin was — is — just such a person,” Robyn writes.
Although they’d never been runners, over time both Robyn and Allan also learned the gifts of running in their own lives. When Jamie started showing increasing signs of agitation on runs, pulling on coaches and vocalizing when they missed his behavior cues, Allan decided he would learn to run with his son. Jamie’s safety provided motivation, but there was also a deeper reason. As Robyn came to appreciate, Allan “…would never be able to talk to them about girlfriends, college, politics, or his own childhood. That kind of relationship would never be possible. What he could do was share something else with Jamie; he could run with him. So despite the setbacks he faced on the trails because of his MS, Allan kept at it.”
Robyn continued cheering her family from the sidelines until she faced her own health scare. Diagnosed with breast cancer, Robyn finally faced that she needed to make time to care for herself amidst her family’s needs. Allan had read about the potential for exercise to reduce the risks of dying from breast cancer, and made Robyn promise to try running. Undergoing chemotherapy, she went out for her first run.
“I listened to my footfalls on concrete, and with each step, I felt myself running away from that cold leather chair and the IV bags of bright orange fluid. Instead I was running toward strength, toward wellness.”
Power of running
The Schneiders’ story is a moving testament to the power of running — one that would touch the heart of any runner, parent, or person who has strived to remain positive in the face of adversity. As two-time Olympian and fastest U.S. marathoner in history Ryan Hall says on the book’s back cover, “Running can be the best medicine in the world. It can heal us, relieve us of our anxiety, and even, if only for a few brief moments, remove us from the trials we face.”
What challenges have you overcome to run?
Perhaps a better question is, what challenges have brought you there?