Today, the story of a Washington family’s journey through the special-needs world and the difficult navigation of the “aging out” years, will be published as the memoir “Next Stop,” (Amy Einhorn Books).
Here are excerpts from our Q&A:
How has your family reacted to the book?
Autism is never a story about one person; it is the story of an entire family. There was no road map to follow on raising David, and the truth is we’re still winging it everyday. So before I began the book I asked my husband and each of my three sons for their permission to write about us.
Skeptical at first, my oldest son shrugged and eventually said, “Cool.” My middle son said yes on the condition that I not embarrass David or “make his life any harder than it already is.” My husband agreed only if I promised to highlight David’s strong points along with his cognitive disabilities. Interestingly, his insightful directive opened up the whole story for me because David’s strength lies in his long distance running, which became the real-life metaphor for his moving forward into independent adulthood. As for David, his response was vintage David. He said, “I don’t care.” That left me with the daunting task of how to be an honest steward of my family’s story.
Where is your son at now, in terms of independent living?
David works with a supported service provider as a groundskeeper cleaning public parks with a mobile work crew. He’s outside — rain, snow, or sleet — but he likes that part of the job. With baseball season coming up, he’s heading into his fourth season in a part-time job as an usher at Nationals Park. He still lives at home, saving his money for the apartment he’s itching to find. He’s got a young man’s can-do spirit, but his innocence and vulnerability make him an easy prey for the unscrupulous among us.
Socially, he’s still a loner, but he’s turned into a serious distance runner. He’s completed three marathons now — the Marine Corps twice and New York City last November — training solo for each of them. He came home from D.C.’s St. Patrick’s Day race [this year] saying he’s happiest whenever he’s running a race. I think it’s because the playing field is level and out there he really is just a regular guy.
A new study shows a significant earnings gap for mothers of autistic children. The researchers say this reflects that parents, mothers especially, have a more demanding road than others. That’s certainly reflected in “Next Stop”. What do you think can be done public policy-wise to better support families of differently-abled children? And what about resources after those children “age-out”?
I think we have to direct our anger into positive action by letting our representatives at the state and federal levels hear our stories. We families get that instead of seeing autistic adults as targets for therapy, we must commit to a society in which they have equal access to jobs and the skills to succeed with the support and legal rights they deserve.
Right now, Autism Speaks is leading the fight for autism awareness. They offer free toolkits to help with everything from early intervention regarding autism diagnoses to teaching supporters how to lobby Congress to require insurance companies to cover autism treatments. Another dependable resource to check out is myautismteam.com. Both groups have impressive state-by-state resource guides to help people research information on the top issues facing autistic young adults: employment, housing and independent life skills management.
In the meantime, both mothers and fathers alike would be wise to develop a strong circle of support to turn to before the fatigue becomes too much to bear… And, somehow in there, I would urge every mother to attempt the unthinkable: salt away some time alone. We all need to carve out time for a good night’s sleep, attention to diet and an honest effort at regular exercise to replenish the body’s well. Once in a while, being a little self-centered might be the most big-hearted thing you could do for your family.
You use the term “differently-abled.” Can you tell me about its origin, and why/if it’s more accurate than “special needs”?
The first time I can remember hearing the term “differently-abled” was in a Sesame Street song about the time David was born (1987). The lyrics were simple, something along the lines of “Everybody’s differently-abled…” That approach strikes me as casting a wider, more tolerant net than the somehow more patronizing term “special.” David taught me that. He never wanted to be known as “special”; instead he always wanted to blend in and be just an average person.
Recently I’ve noticed there is a movement by some folks on the autism spectrum toward labeling non-autistic people as “neurotypicals.” I suppose it’s tit for tat because names and labels help us all feel more comfortable with the things we don’t fully understand. By the way, I suppose it’s no accident that I chose as the book’s epigraph this Will Rogers line: “You know, everybody’s ignorant, just on different subjects.”
Continue the conversation with Finland today at noon. Submit questions for her here.