|No, that is not really me. I was bigger.|
When I was 7 ½ months pregnant with Conor, I put my hand on my huge belly (I had gained 40lbs, I guess that explains the stretch marks) and proclaimed to my mom that I thought I could handle anything, even the death of my child, except autism.
My mom frowned at me, pursing her lips in a disapproving way. She shook her head. “Plenty of people love to work with that population, Alisa,” she declared.
(She worked for a nonprofit that provides day habilitation, vocational and support services for adults with cognitive disabilities. Many have autism as well. My husband travelled a lot so I had lunch with her often at her office.)
“I think that’s great, Mom, that people take on that work, “ I replied. “But I don’t think I could handle it, my own child.”
I had seen a TV report about autism just the day before. It may have been on 60 Minutes, I’m not sure. I do remember the beautiful towheaded boy and his mom. He screamed every waking moment of his life. (Was he five years old?)
From the time he woke up until the time he went to bed, he screamed. He was nonverbal but vocalized constantly. It was awful.
And his mom, she worked so hard. You could tell from the tiny segment of the 60 Minutes report, she had the patience of a saint. Me, I have the patience of a two year old. Yeah, it’s not one of my virtues. (My family and friends will happily confirm that.)
So I’ve often pondered what this all means, being handed the very thing I knew I couldn’t handle. The one thing I just did not want. And it’s turned out to be just as hard as I feared. Different than that boy, but just as hard.
If I believed in a god, I would say s/he was testing me, trying to prove to me I could handle it. But I’m agnostic (leaning toward atheism), and I can’t. At least not very well, most of the time.
I pretend to be a Buddhist sometimes and I guess they would say it was some bad kharma. But basically, they would leave it up to me to figure it out through meditation. And burning incense. (To cover up the smell of the pot. I kid, I kid, totally not serious, don’t call my mom. Or the cops.)
I’m not sure why I was handed the exact thing that I feared. With 1 in 94 boys now diagnosed with autism spectrum disorder, I guess the appropriate question is, why not me?
every time you write a post, I pull something out of it that is spot on relevant to my life with my autistic son. your blog is cathartic, thank you.
Thanks, Mike. It's nice to know we're not alone, isn't it?
it certainly helps get through the rough days
I've had no experience with autism, but it has been my experience that life will hold for you the very things you fear the most. I think everyone deals with something that terrifies them at some point in the life. If there is something you cannot tolerate, you will find it standing in front of you. Alisa, I know you are floundering right now, but if you can just focus on one moment at a time, one positive at a time. A smile, a step forward, a breath of fresh air, the sound of a bird singing outside the window. Even the smallest of things can make such a difference if we allow ourselves to notice them. Your son is more than autistic, he is who he is. I don't know if that makes sense or not. I realize it has been necessary to focus on that one part of him, but he's under that layer of autism somewhere. Is he good at anything in particular, shows joy in anything? Hope is hard to find sometimes, I do know about that. But it's worth looking for, espcially in the small things. Take one step at a time, don't think about tomorrow, think about how well you took that one step just now. No one knows what causes autism, you certainly didn't cause it. It's easy to blame ourselves for everything that happens around us, but blame is a negative. Let it go, it doesn't matter what happened in the past, it only matters what you can do with what you have right now, this very minute. Please take care.
I totally identify with your post about "I can handle anything but autism." And then your son ends up with autism. So many times I have said something about what I couldn't handle or would never, ever do and then, blam, there it was. (If we were having drinks somewhere, I'd share these events with you but we're blogging, so...) Still can't decide if I "caused" something to happen by my hubris or whether I backed into a sort of clairvoyance - the future was luking out there just pointing the way to its inevitable conclusion. I kind of think it was the latter. In any case, I don't make these kinds of pronouncements anymore, just in case. Anyway, it feels like the damage has already been done. But I don't want to jinx myself any more, just in case.
By the way, Conor is adorable. Hope things resolve positively and soon.
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