As parents of children with autism, one of our most beloved clichés advises us that our journey is a marathon, not a sprint. We need stamina more than fast starts. We need patience. We need to pace ourselves. We need to remember to enjoy the scenery along the way. The metaphor seems so fitting, I used it myself for years.
But I won’t use it again because I’ve realized that, as the Gershwin song warns, it ain’t necessarily so. In a marathon, the runner alone decides on her level of training and preparation. Her pacing, her decisions, her fortunes and misfortunes during the race impact no one but herself. But consider the long-distance relay runner, part of a team who not only runs toward a goal, but must be part of dozens of group decisions along the way, roll with the detours, weather vagaries, darkness and sleep deprivation. The number of miles covered by each runner may total less than a marathon and come in small increments, but the overall experience is much more grueling, physically and psychologically.
Sound metaphorically familiar?
All this came into focus for me when my nephew, an experienced marathon runner and long-distance cyclist, joined a team of twelve to run the Hood to Coast Relay here in Oregon in 2012. More than 1,000 teams participate in a run that starts 6,000 feet up Mt. Hood and culminates 200 miles west in the eponymous town of Seaside.
In a marathon, my nephew said, you fall into a comfortable rhythm and it’s over in a few hours. The night before and the night of the race, you sleep in a nice bed. Contrast that to a 200-mile relay during which runners grab an hour or two’s sleep in a van, on a gym floor, under a tree in a park. It’s hours of cramped travel, then hours of waiting to leapfrog your teammates to the next point where you take off running.
You must run much faster in a relay than in a marathon. You run in the dark over unfamiliar roads lit only by a headlamp. Various members of the team at various times argue about money and who’s responsible for bringing what resources to the table. Some teammates think only of themselves and define their contribution without regard to the effect it has on other members of the team. During the race, unforeseen detours force some members to run farther than they had planned in order to complete their leg of the journey.
Sound familiar? The job of raising a child with autism is more like running a relay than a marathon. We remain as team captain, but every year we hand off our child to a new teachers, and along the way we pass the figurative baton to new clinicians, new caregivers.
At the end of Bryce’s childhood we experienced another cliché, that every end is a beginning. The passing of the baton seemed to accelerate. He left high school and a familiar team of classmates and supportive teachers, and moved on to college and an ever-changing assortment of classmates and professors (some very good, some very not) and disability counselors at two colleges, all of whom displayed an attitude of whatever-it-takes. One by one our pediatric doctors said, congratulations, it’s time to move on. We met new doctors, embarked on new treatments. Bryce got a driver’s license and transported himself to the next hand-off. He ditched his high school clothes for unbranded, casual-classic. He traded his adolescent career aspirations for ones he deemed equally interesting but more realistic. He left the Bank of Mom behind and opened his own credit and checking accounts.
Little remained the same, except family. But the relay goes on, as it does now, leaving college and pursuing employment and independent living.
The Hood to Coast relay does of course end—at the edge of the planet’s largest ocean. Breathtakingly beautiful, boisterous, teeming with life and color and possibility, perpetually throwing itself toward us, ever-changing, extending beyond the limits of what we can see.
So my sister-in-law and I went to the edge of the ocean to pick up my nephew at the end of the relay. In spite of the discomforts to body, brain and pocketbook, he said would do it again. As autism parents, we too do it again and again, approaching the next milepost and the next and the next, with the ever-renewing opportunity to hone our hand-offs and ensure the best and smoothest possible transitions for our children, at every leg of the long-distance relay we call life.
© 2015 Ellen Notbohm. www.ellennotbohm.com Contact the author for permission to reproduce in any manner.