Yesterday I went to a support group hosted at the boys’ school for parents of kids on the autistic spectrum. And afterwards I came home, and reached out to friends, in need of post-support-group support.
I’ve avoided support groups in the past. I’m not in any online autism-based communities…and often I fear talking to parents of autistic kids about autism. I’m convinced that I am too introverted, too analytical and WAY too sensitive for support groups. What one parent finds supportive, I find offensive. One parent’s therapy choices can make me feel like I am not doing enough. One’s parents decisions on diet can make me feel terrible for my cookies-that-do-have-gluten.
The thing about support groups, is that everyone is walking in raw. We feel a LOT of things about our kids’ diagnoses and as we each elbow in, seeking the kinds of support we need, we can end up stepping on each other’s toes. Often without even knowing it. I feel baffled by the support-group model. I know that they can be tremendous sources of support, but I don’t get it. How can a group with diverse backgrounds, and diverse perspectives and diverse support needs end up successfully supporting each other? I don’t think: it’s not possible. I’m honestly curious about how it CAN work.
Yesterday at the meeting we were all given a pamphlet to read. And at the end of the pamphlet was the line “who knows? your child may be the next Einstein or Mozart or Van Gogh! They were all autistic!” And I am SO tired of that line. I don’t find that rationale supportive AT ALL. I find it downright offensive. Three years ago when I was mailed paperwork with Isaac’s IQ score and ranking of “borderline mentally retarded” my world view completely changed. I had NO idea how much I valued intelligence before. I had NO idea how narrow my range of “successful life” outcomes actually was. I had no idea that I secretly harbored a prejudice against people that weren’t “smart”. But seeing that paperwork made me face down those things and do the slow and painful process of reworking my world view and make steps closer to what really is true. And what is true? It’s simple. What’s true is: Everyone matters. Everyone is important. A successful life isn’t about income or career achievements or intelligence or power. A successful life is about giving and receiving love. A successful life is about authenticity. And so when people tell me that maybe one of my boys will be the next Einstein, I feel like that is the autistic-kid version of the same false message our culture screams at piercing volumes. You are important IF. You are valuable WHEN. Your autistic kid can too achieve our culture’s narrow view of success! Don’t give up hope!
And it’s all just a load of hogwash.
MOST autistic kids don’t grow up to be Einstein. And I just want that to be okay. I want it to be okay if my kids don’t get shipped off to MIT and become record-breaking-nobel-laurete-winning scientists. I want a broader range of outcomes to be acceptable. I want it to be okay that my kids be exactly who they are. Even if it doesn’t meet our culture’s standard of success. When I hear the Einstein-line, I feel a sense of panic. I feel like “that’s your standard? we have to achieve THAT?” And it feels like an unfair-pigeon-holing.
But…at the same time, I get it. I know why people say the line. I know it’s attempt at encouragement and no one is trying to hurt me. AND I know that weird people CAN achieve amazing things. But, ultimately, it’s a source of support I am against.
But…not everyone is. Which brings me back to the support group.
In our bumbling attempts at sharing and supporting yesterday there were a lot of those tired lines getting thrown around. And I’m sure they were genuine sources of support for some of the parents. But I’m also sure that they were NOT sources of support for everyone. So then…how does this work? How can we support each other? I’m not sure…but I’m definitely interested in finding out. And so, I’ll be returning next month…maybe with my guard up a little higher…and I plan to watch and see what happens. And maybe, at some point, I’ll find a new, unlikely source of support.
Yesterday we had a lovely snowstorm that called for chocolate chip cookies. And I had no choice but to answer the call. The cookies were still warm when the boys got home from school, which made for chocolate smeared smiles while they shared stories of their day. And it made me think that my two cookie munchers might not be the next Einstein or Mozart or Van Gogh, but I can’t help but love exactly who they are. :)