8/10/2014

Two decades in: What autism means in our house




This is Bobby, our oldest, wearing our cat Hammy, as you do, naturally. In December Bobby will turn 25. A quarter of a century old. 1/4 of his way to 100, although fractions are not his strong suit, so he probably, almost certainly, wouldn't be able to describe it in those terms to you.

Bobby is autistic and intellectually disabled. That's what the government, both local and national, focuses on. His impairments. His not-able to's. Every year I fill out guardianship papers and SSI paperwork to show how Rick and I have cared for Bobby, how we have managed his time, made sure he socializes and we account for how we spend his money. 

None of the paperwork asks the important questions: what does he enjoy doing, what is he good at, is he happy, does he have the life he wants. 

Two times a year I am asked to focus on only his inabilities. Truthfully, each day he and we have to face the realities of an impaired working memory, damages from a stroke affecting his left thalamus, and a very low 1st percentile verbal performance. The truth is, none of us ever forgets his challenges because constant accommodations are made each and every day to take advantage of his strengths and to minimize the effect his disabilities have in his life.

It is, in many ways, a carefully constructed environment, catering to making his life and the lives of his sisters, who are also autistic, good lives that focus on their well-being, their happiness, and on focusing on what it means to live a meaningful life. We don't shy away from the world in all its glory and horror. We work on how to live in the world while not being of the world, on how to honor our individuality while learning how to navigate the world, on how to create meaning when we can't find it, on how to be kind and giving despite the opportunities and expectations to engage in casual cruelty.


We work to find our own style and to embrace who we are.


Even if that means we are on our way to our very own clowder of cats since there are always animals in need of a loving home. 

Autism and autistic are not words of shame and regret in our house. They are nouns and adjectives--descriptors of uniquely wired minds that process the world in profoundly different ways. Finding another person who is autistic or who has some of the traits means finding instant friends, instant recognition of one's own tribe.

The world, at the end of the day, will still be there in all its majestic horror. We can always peek out at it and choose how we will react to what is happening, where we can give aid, where we can be kind, when we need to stand and be counted, but it will never define who we are.

I wish that I had known this at my kids' ages. I wish I had had their wisdom, their confidence, their exuberant delight in themselves and in each other when I was their ages.

The truth is that who I am, embracing and loving and honoring that truth, I learned from them.
And part of that is the importance of play and dress up and silliness. And pink boas, especially pink boas.


1 comment:

Julie Sparks said...

Well said, K. I also wish those government forms would ask if the child/adult is happy. Is it the best environment for him/her? But no, it is the government so they must focus on quantitative rather than qualitative life. Sigh.