April 28, 2015 – Autism Awareness Month, Autism Truths #28
I was face-timing with my daughter tonight, helping her complete an English assignment. She and the her siblings are at home with their Baba and grandparents, and I am out of town and spending time with my father, who had surgery today.
In the background, I heard the voices of D loud and clear. A was in the study working, and when it got too loud where she was, she picked up her phone and computer and took me into the family room. But, after a few minutes of working together there, D came in. He made loud, sing-songy noises. She tried shushing him, but he kept on singing. It was rather sweet, and I heard her singing his song under her breath.
Soon enough though, the happy sounds became sounds of distress, and so A moved again. D bhai is being loud, she complained to me. Let’s make du’a that he feels better, I told her. And lets finish your assignment.
Being away from all of them always reminds of me of one thing: For D, there is no walking away from autism. I may temporarily walk away from our autism life, but it’s always a part of me. Still, at times I walk away for a variety of reasons, whether work, crisis, family or a planned activity with the other kids that would be hard for him. For D though, that is his life, 24/7, permanently, never ending, day-in-and-day-out, all the time.And maybe that thought wouldn’t be so weighty and profound if D’s challenges weren’t so great and his autism wasn’t so, well, profound. But it is. I’ve said this before this past month, and it bears saying again — I know I can’t speak entirely for D, nor can I fully know his mind or how he feels or thinks about his challenges, his struggles, his triumphs, his joys, his autism. I’ll never know for sure. So there is a chance that he doesn’t want to walk away from his autism, that inside his head, he likes himself just as he is. There is a chance he wouldn’t change a thing. Sure, he could feel that way.
But I doubt it. I’ll risk being epic-ally wrong, but my money is on the fact that if things could be easier, if the challenges and medical issues mitigated by his autism could be lessened (more than what we continuously try and do), he would want that. He would want to walk away from it. Far, far away from that which brings on nighttime anxieties, that which makes him so upset and frustrated that self-injury is his only option, that which makes it so difficult for the words and thoughts tumbling around in his head to come out in ways the rest of us can understand, that which makes his skin crawl or head hurt, that which hurts inside.
I think he would walk away from that. I’d like to help him run away from all that. But the truth is, it doesn’t work that way. Sitting here tonight, far away from all my babies and hanging out with my dad, I know that I have distance away from it all, from the autism life. But D does not. Is that a good thing? Is that a bad thing? Did he fall asleep peacefully, or was he distressed until he fell asleep under protest?
If he had a choice, what would it be?