When I first read about Adam Race, the thirteen-year-old autistic boy who was banned from Mass at his parish, I was irate. Then I got broody as I sat in my own church the following day, without my own son. Then, as usual, life overwhelmed and I did not write the post I'd spent the church service mentally composing. Then TinaMc sent me a different version of Adam's story, and the irate and broody redescended.
We haven't taken Leelo to church for two years. I didn't see the point: he didn't enjoy sitting for services, Sunday School with his peers was not feasible, and even though the church offered a volunteer to mind him, Leelo has grown so strong and unpredictable that I only trust his supervision to friends and professionals.
Instead of staying home, Seymour and I decided to alternate church weeks: one of us goes to services with the girls, the other takes Leelo to haul ass ride his tricycle on bayside trails. Our family has broken into parts every Sunday for two years. I hate it. If I didn't require so much reminding about How to Be Good, or adore our church's religious education program, I would stop going.
So, part of me understands Adam's family's desire to attend services with their son. They are a family, damn it, and families do things together. I also applaud their activist perspective: Our autistic children are part of the community, we are proud of them, and we're not leaving them at home if we can find a way to make an outing work. We're here, we're quirky, get used to it. [I am so making that my new tagline.]
But then another part of me wonders if Adam wanted to be at services. I don't know him or his parents. But I am constantly fighting with myself about whether to expose Leelo to activities that he will find unpleasant for the sake of increasing his tolerance. Does it benefit him, or us? Which is fair?
I can't ask Leelo; I can only observe his behavior. Behavior that Seymour and I can interpret, but which, like Adam's, is alien to many people. And perhaps Adam is like Leelo, who wants to go out with his family, but who also needs accommodations so that his sensory triggers and stressors don't overwhelm him. Leelo loves to hum and bounce in his seat and chew on straws. Adam finds it comforting to have his wrists bound with soft fleece strips, or have his parents sit on him. What person outside the special needs world wouldn't find such behaviors odd?
But odd behaviors are not necessarily disruptive or dangerous, so this is where participating outsiders in special needs scenarios need to put on their very best thinking and empathy hats. Is the behavior truly untenable? Or does it just make you uncomfortable because you don't understand it?
Adam's behavior certainly doesn't conform to the church's expectations. And even though the church says it has attempted to make accommodations, those accommodations were not described, and I have to wonder if the family was consulted as to their scope.
For all the behavioral problems the article cited, I wonder about what no one outside the family probably saw: The herculean efforts by Adam and his family, everyone doing whatever it took to stay in that pew, week after week and month after month. They get my applause.
I feel for the Race family, and Adam. I look at Adam's picture, past the cuts on his face, and see a beautiful boy. A very big, unpredictable boy, like mine but fast-forwarded six years. A boy who sometimes does crazy things that no one could have predicted. A boy whose family is doing their very best. If they do not always succeed, that just means they need more support. They certainly shouldn't be further isolated by punitive legal actions.
We have come up with a number of techniques to help Leelo deal with scenarios he would not otherwise tolerate. And maybe it is time to see if we can use those techniques to help him sit through services. It might be slightly distracting to the other congregants; he'll be stimming with a straw, and I will be occasionally prompting him on mastered activities such as lacing cards, puzzles, and drawing on a magnadoodle. But Unitarians would rather die than openly discriminate. And it would feel wonderful to attend services with my husband and entire family.