August 28, 2013

The Great Divide

Posted in AMT's Faves, My Take on Autism tagged , , , , , at 1:24 pm by autismmommytherapist

Summer 2013 056I can never die.

I realize how patently absurd this statement is, although I have multiple family members who have lived obscenely long lives, and I’m hoping to take after them. Truth be told it’s a fantasy wish, one I ponder often as I contemplate having that extra roll at dinner, or that second glass of wine. I’m at least shooting for triple digits, exercising (fairly) frequently, taking my vitamin C (when I remember), and mostly eating a healthy diet. It’s something I feel very strongly about, because the stakes are so high.

You see, I can never die, because my eldest son Justin, who has severe autism, will always need me.

If I’m being completely honest with myself, he may want to dispute that fact forty years from now. Since nobody can completely predict the trajectory of his progress, it’s entirely possible he may one day live in a residential setting where he has gainful employment, good relationships with his caregivers, frequent and enjoyable outings, and no desire for constant maternal care. When I envision his future life without me, those are the images I conjure up mostly to save my sanity- a life where he is happy, productive, and safe.

I create those pictures in my mind because frankly, the alternatives are unbearable.

And this is my sticking point with autism, when I contemplate its gifts and its burdens, one that seems permanently impassable for me. I’ve read beautifully constructed essays extolling the virtues of the non-mainstream life, one which does not include college, independent living or an adult relationship. I’ve reached a point in my own consideration of autism’s path where I can see that Justin, despite (or maybe because of) his severe autism, may absolutely revel in his non-typical path, may even be happier than the rest of us (and some days he is).

I’ve permitted myself to entertain the possibility that he will be just fine for those forty years he’ll grace this earth while I’m in my grave, most likely still attempting to control things from afar. I know, intellectually, that everything could be alright.

And then I read articles like the one that came out in the Seattle Times a few months ago, and my heart just takes a slow, treacherous dive through my body and shatters at my feet.

The piece outlines how in Washington state, the watchdog group DRW (Disability Rights Washington) discovered that in over 3,000 abuse, neglect, and safety-violation charges in residential placements, over 1,000 were closed by the Department of Social and Health Services without investigation. In addition to cases of physical abuse, the DRW also reported on cases where individuals’ lives were put in danger by sheer negligence.

One example of this was in the case of adult autistic twins, where one brother was mistakenly given a double dose of insulin, which could have resulted in his death. Sadly, he was the lucky one of the two- his brother was overmedicated as well, resulting in a comatose state, and permanent brain damage.

I’d like to tell you that articles like this are few and far between, but they aren’t. Every year children and adults with autism are abused and sometimes even killed through sheer neglect, or even premeditation. Quite honestly, for years, no matter how wonderful my days with Justin are, these are often the last thoughts I have before I drift off into slumber.

And that’s the crux of the issue for me, the one I feel separates me from my friends and family with typically developing children, and even separates me from those within my community at times as well. I can’t fathom that when I die, I won’t know the people who will be caring for my boy when he’s old- in fact, they won’t even have been born yet. I can’t quite grasp the fact that he’ll always need intensive care, and his father and I won’t be around forever to deliver it.

I can’t accept that even if things go as well as possible, he just might be lonely for half of his life.

It’s my personal great divide, and after nine years embroiled in autism, I still don’t know how to cross it.

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8 Comments »

  1. How brave of you to put into writing what so many of us, as Autism Moms and Dads, have to worry about. Many people don’t even think about this stuff, but as parents of kids with ASD, it is a thought every day.

    Beautifully written….

  2. Amy Rangel said,

    Great article Kim. I admire your honesty.

  3. chad said,

    Berlee–

    So powerful and brave as always…

  4. Tears roll down my face as I read your post. You are so brave ~ I admire your courage, your integrity and your inspiration. I pray we find a bridge to cross that divide for you ~ it’s the least that you and your family deserve. The very least…xoxoxo


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