We all do it. That anti-explosion dance. Prompt. Role-play. Remind. Make schedules. Warn. Make more schedules. Remind. Plan. Prevent. Plan some more. Anything to avoid that dreaded explosion. For we all know what happens when they pop. There's no going back.
Willie hates to be shaved. He can't shave himself as his hands just don't work well enough. He says he likes the unshaven look. But really Willie hates the feeling of water on his face, that slimy soap. There's no such thing as shaving cream. That is not allowed in his sensory budget. He hates the feeling of the razor on his face. What if you cut him. Make him bleed. He just plain despises it.
So I plan for the shave. It is a meticulous and intricate process. You have to do it when he's in a good mood. You have to do it when he has something to look forward to. After a very good night of sleep for sure! You have to do it when he has been fed. You have to do it when he is distracted enough with something on the computer. "The Shave" requires quite a battle plan.
I failed recently. My hand is not working as I had surgery. My husband was to shave Willie. I didn't plan well enough. I asked my husband to shave Willie at the worst possible time, right before he had to go back to school. It was a desperate and terrible decision. I blatantly ignored all the regular rules about avoiding this explosion. He popped. He exploded. It was horrible.
And the worst part of these explosions, as Willie becomes an adult, is his self-recriminations. For always after he calms down, he hates himself for the tantrum. He punishes himself. He gets stuck in obsessive thoughts of self loathing. Each explosion scars his psyche, his self-confidence, his chance of happiness and peace.
That anti-explosion dance: the stakes are so high!
I took Willie to renew his photo ID yesterday at the friendly department of motor vehicles. Actually the lady who helped really was friendlier than I had could have ever expected. As I observed Willie struggling to sign his name 4 different times on all of the electronic forms, it dawned on me how hard it must be to live with a permanent disability.
Of course, it didn't just dawn on me yesterday. Willie's hands just don't work. They never have. I try to describe his limitations to other people by imagining wearing thick mittens all the time. He has just recently been able to write his name in small letters, small enough to fit on those little computerized screens.
Two weeks ago, I had surgery on my thumb to help with debilitating and painful arthritis. Of course it is my right hand and that is my dominant hand. Living with a temporary disability, only being able to use one arm and hand, has shed enormous light on all those who suffer from permanent disabilities. My respect for those individuals has grown tremendously in the past two weeks.
While I watched my son Willie, struggle to write his name
on a small screen, I was really taken aback about what it must be like to live that way every day. As I struggle with my left hand to write words, my frustration and helplessness mounts and mounts. As I struggle to brush my teeth every day and to even put my hair in a clip, I wonder what it must be like to be like that all the time. And then I look at my son's teeth that are never quite clean, whose hair is never brushed, and I have a complete new understanding and appreciation of what it must be like to be him. To have a permanent disability.
Thanks to the talk writing feature on my iPhone, I am able to get this blog posted. For Willie to be able to use such technological advances, requires complex executive functioning skills that he too is lacking. But I'm getting ahead of myself. For that is a post for another time.
