02 November, 2007

an old crosspost...

There are days, few and far between, but there nonetheless when I feel as though I can't handle all this on my own. It's hard enough being a single parent, but then you add in a special needs child and throw into the mix that there is no extended family close by to help out. And what comes out....frazzled frustrated me! Ugh!
For the most part we've gotten things down to a system and we manage to get through the day to day without too much difficulty. At this point I feel as though I've adjusted fairly well to his needs and emotions and there's almost a sense of intuition or predictability to it. I can judge a room before we enter and know what will set him off: whether it's the crowd, the lighting, the smell, the feel of the floor...
And then there are 'THOSE DAYS'....the ones where I have 1 in 100 odds of preventing imminent disaster. I still don't know what set him off today. But my jaw bears testament to his inner turmoil with a fresh bruise. Foot on jaw with force = very bad thing!
My own frustration really lies in the fact that there is sometimes very little I can do help him because the sensory integration disorder that is part of his autism won't allow him to accept comfort when he is in meltdown mode. Tactile defensiveness can manifest as a pain reaction to a hug or a gentle caress and something as a soft as a whisper can bombard his ears like a siren. It is those times when I feel adrift and helpless and useless even. It is those times when I wonder if there is any 'getting better'. And then there's the guilt in my heart that says 'if you can't accept that he is perfect as is, how can you possibly expect others to do so?". In the maelstrom of stymming or meltdowns it can be so easy to forget the sense of wonder and perfection that he brings to my life.
What interests me most on a daily basis is all the autism research that seeks a cure or a solution. So far, there isn't any one fix. There's therapies, essentially limitless....ABA, Occupational, Speech, Physical, Fine Motor, Gross Motor, Social Skills, etc... But what I wonder in my heart of hearts is why am I sometimes so desperate for a cure? Why do I feel my son needs to be 'fixed'? Is it simply because society has imprinted on me it's rules of what is acceptable and what is not and I am imposing them on my child? The thing is, I know that compared to your average mainstream child, my son is different. But what I don't know, what I don't necessarily believe, is that his autism is a bad thing.
He sees the world in ways I can't even imagine. His senses take in things I don't even notice. And his mind works around puzzles and mysteries until he finds a suitable answer, whereas I would just accept the standard opinion. The changes he has wrought in me and my use of my talents and God-given creativity would probably never have occurred were he not autistic.
So does he need to be fixed or programmed or therapied until he fits into society, or does society at large need to once and for all realize that true beauty lies in each person's difference....

1 comment:

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