There was a circumstance that utterly altered the visions Steve and I have for Jason and Joshua’s adulthoods.
Maybe like you, I serve on some committees exploring issues relevant to the well being of people with intellectual disabilities. In this case, it was the “Evidence-Based Practices” committee led by Maine’s Office of Child and Family Services.
The University of Maine (UM) system was represented on that committee in part by Alan Kurtz, now Coordinator of Education and Autism at UM’s Center for Community Inclusion and Disabilities Studies (CCIDS).
(Warning: Lots of letter abbreviations, but this stuff is important to know.) The CCIDS is Maine’s University Center for Excellence in Developmental Disabilities (UCEDD.)
There are 67 UCEDDs, at least one in every US state and territory.[1] The UCEDD vision is “a nation in which all Americans with disabilities participate fully in their communities. Independence, productivity and community inclusion are key components of this vision . . . UCEDDs work with people with disabilities, members of their families, state and local government agencies, and community providers in projects that provide training, technical assistance, service, research, and information sharing, with a focus on building the capacity of communities to sustain all their citizens.” [2]
A focus on building the capacity of communities to sustain all their citizens. That’s right up our alley, isn’t it?
Alan and his teammates had a grant through the US Department of Health and Human Services. The purpose of the funded study was “to assess the effectiveness of a transition planning approach that empowers students with ASD[3] and their families, educates them about the transition process, and helps them connect with community resources on the transition readiness of youth with ASD.”[4]
Alan was looking for subjects who were at least 16 years old to participate in the study. I happened to have two. We applied, and our family was accepted as subjects.
A component of this research included group training of families based upon a curriculum called SPECS (Special Planning Encourages Creative Solutions.)[5] At 16, Jason and Joshua were the youngest participants eligible for the study; therefore, other parents in the training had older kids with autism—old enough to drive. A car. Drive a car. A kid with autism driving a car. I had never heard of such a thing!
Stunned, I thought about it. This was obviously not something Josh could do. But Jason . . . Jason used to skillfully pilot our 40 hp 13’ Boston Whaler with a discerning eye towards both the sea state and other boat traffic in places as busy as Boothbay Harbor. (Not alone, mind you—Steve or I were always with him.) I wondered . . . no. By definition people with autism have language impairments. Maybe Jason would get the mechanics of driving down, but I couldn’t begin to imagine how Jason would negotiate a car accident which, as we all know, is not uncommon among young male drivers under the best of conditions.
“People who are deaf drive,” someone pointed out to me. If a deaf person who communicates with sign gets into a car accident, I was told, they are prepared with documents and a written explanation of their hearing impairment and communication needs.
That makes sense.
But can Jason do it? Can Jason take Driver’s Education, earn a Learner’s permit, learn to drive, and pass the written and on-the-road tests? Do we want him to? We didn’t know.
No risk, no reward. How do we keep Jason safe? How do we keep everyone around Jay safe?
(Are these questions any different from those of parents who have neuro-typical adolescents of driving age?)
We decided to try. We figured we could always back out along the way if we had to, although we had no idea how disappointed Jay might be over that. No risk, no reward.
Advantage Driving School was right across the street from Hall’s Olympic Martial Arts, where Jason took Tae Kwon Do. Shaking, I gave them a call.
(Flashback: The kids are in the third grade. I call the local Webelo (scouting) Mom (WM).
Me: Hi, hey I have these twin boys, and I was wondering if they might join the den, or the pack, or whatever it is . . .
WM: Sure, why not?
Me (very apologetically): Well, they have autism, and I—
WM: Oh, you know what? The kids have been working on their Webelo studies for a while,[6] and, you know, they’re all kind of a group now . . .
(What I hear): Forget it. No abnormal, broken kids in our den messing things up.
(What WM probably meant): Holy cow I don’t know the first thing about autism, and I have enough on my hands herding 8 little boys who are normal, and the very thought of this scares the stuffing out of me.
Me: Oh sure, I understand. Ok, bye.[7]
And then I cried, because now I knew for sure the World would always be a difficult place for our special boys.)
Shaking, I called Advantage Driving School.
The conversation started very similarly to the Webelo one, but when I got to the part about Jason and autism—
Donna: No kidding! I used to work with kids who have autism! This is great!!!
Who knew??
See, and that’s the point. You have to have the courage to try.
The Individuals with Disabilities Education Act was passed in 1975, the year before I graduated from high school. If you’re in my age bracket, you probably didn’t go to school with a lot of kids with disabilities. But kids since 1975 have. And today a lot of them not only remember a classmate with disabilities, many of them have been inspired by one or more. Neuro-typical “kids” of yesterday are today’s bank tellers, police officers, physicians, piano teachers and grocery store managers who tend to have a level of comfort with people of diverse cognitive and physical abilities. (There are exceptions, of course. Or maybe WM was just wicked old. meow. Sorry.)
Some of those “kids” are even driving instructors. . .
[1] http://www.aucd.org/template/page.cfm?id=667
[2] http://www.aucd.org/template/page.cfm?id=667
[3] Autism Spectrum Disorder
[4] https://ccids.umaine.edu/files/2013/04/FOA_FCTP_Hagner_Kurtz_2012-2.pdf
[5] Cotton, P., & Boggis, L. (2007). Specific planning encourages creative solutions (SPECS) training curriculum. Durham: University of New Hampshire Institute on Disability.
[6] Seriously? There are Webelo studies?
[7] Rest assured the Me of 2015 would handle this differently 😉
I have to confess, knowing you and your boys personally has challenged a lot of my thinking about how we should “build the capacity of our communities to sustain all of their citizens.” I was amazed to realize that Jason drove, not because I doubted he would be capable, but because of the challenge to communicate if there was an accident. And yet he has managed beautifully in any number of challenging situations. With your help and coaching, our community has raised its level of expectation and made room for him. That is powerful. This post challenges me – not only for the special needs community but for myself. What ways am I holding back, not risking, not reaching for the reward? And how does my paradigm of community need to change to include all of its citizens – all of them? Thanks for the push.