Sunday, August 3, 2008

My Sons Greatest Handicap

Someone in our support group had mentioned that the greatest disability our children had was: they didn’t “look handicapped”. With some disabilities it is visible and with others once a child moves or behaves a certain way it becomes visible. In a lot of cases, with my child, it’s not always apparent that he has a disability until you talk to him or if you watch him for an extended period of time. The other person will get this “funny feeling” that something is just not right.
I either leave to avoid embarrassment or try to explain why they are experiencing this strange sensation. A lot of times there is no quick explanation. I suppose this happens with other disabilities but sometimes there is a handy quick label to supply for an explanation. That just isn’t so with this type of disability.
It actually doesn’t matter what the disability is. Because whether or not it is visible or there is an explanation I am brought back full circle to the idea of who really is the disabled person here.
My child is usually not aware that he is receiving this type of reaction and quite often he doesn’t really care. So who is the disabled person? Why, me, of course! I am the one who feels compelled to explain why my child is acting the way he is. I am the one who feel compelled to leave because either I have to give the long version of his disability or give the short one and most definitely risk misunderstanding. That’s a whole other story.
In the first case I am disabled by my ability to succinctly explain what is different. I am disabled by the fact I feel compelled to explain my child’s behavior. My mind races for a simple way. I try to gauge how understanding this person is and how much I can tell them so they understand but don’t jump to conclusions.
If I run away I am disabled by my compulsion to hide my child, to protect him. I am afraid of their judgment and opinions, which really won’t make a hoot of difference to my child.
In truth, I am under no obligation to do either of these things but because I am disabled I feel driven to do this. But I have a lot of experience with both of these situations. I have a lot of experience with people who stare, glare at my inability to “control” my child so he meets their standards of how a child his age should act and talk. I have a lot of experience using different speeches to explain why he does what he does. Not many of them have been successful.
But that was awhile ago. I’m not cured of this disability but I’ve learned a new way to handle these situations and I learned from the best. I choose not to be too concerned by what my child is saying or doing. I choose to focus on the moment and deal with what I find inappropriate behavior, actions or verbal outbursts. If nothing too bad is happening I often will look at people’s reactions but quietly I say to myself, “It’s not me or my son who has the disability here. They do. And the sad thing is they don’t even know it.”

The Michael Jackson of Socks

I was washing my son’s clothes the other day when I came across what he had done to his socks. He’s in his 20’s now but sensory integration – how things feel when they touch his body in any way – has always been a part of his disability. He had neatly cut off all the corners of the toes.
“Honestly!” I sometimes wondered, “Does he not think I would notice this!?”
As I was chiding myself for not consulting him when I bought them, a smile crept onto my face.
An amusing memory, or a Magic Chuckle (see story about what a Magic Chuckle is) that showcased this very issue, popped into my head. At the time I did not know this was even called a “sensory integration issue”. I was just annoyed at how often I had to redress my child every single day.
Remember how Michael Jackson used to go around just wearing one glove? That is how my son got nominated for “The Michael Jackson of Socks”.
Moms of the world can attest to the energy and time that goes into dressing a child. In my case multiply this by five. Sometimes I hated to even bother. In fact if we weren’t going anywhere I wouldn’t and if we were….well you can bet I did it 15 minutes before we left and I could pin him down in his car seat. This still didn’t deter him from removing socks and shoes so sometimes I wouldn’t even put those on unless it was cold out.
My routine was solid. I would plan what I was going to do and dress myself first and then buttoned, zipped, pinned, pulled and tied my son into his. My hand was poised with the door half-opened when the phone rang. Before I could grab my son he was off, out the door. As I answered hello he was tottering down the steps. I wasn’t too worried. We lived on a farm with miles and miles of flat land. If he took off I would be able to see his head bobbling through a field.
I hung up the phone after five LONG minutes and flung the screen door open as I walked through it. I wouldn’t have to look far for my first clue: a pair of tiny Velcro sneakers on the steps. As I bent over to pick them up, for future redressing, I noticed his socks piled up 20 feet away. And so it began. I began to understand how Hansel and Gretel felt following a trail of bread crumbs.
I followed the trail to the corner of the garage and sighed. Yesterday my other two children had loosed several gallons of water from the garden hose into the pile of dirt behind the garage. It had turned the place into a massive area of quicksand. At least that is what they had excitedly called it. After playing in it yesterday they were quite leery of ever going back to it. I had had to drag my sucked down feet through it yesterday to retrieve two sobbing children. They’d gotten mired up to their knees. I could still hear the sucking sounds as I pulled little bare legs and feet from the unrelenting mud.
As I turned the corner I expected more of the same. What I encountered was a cooing young child in his glory. He was stark naked, up to his thighs in mud. He was just starting to wobble as his bottom smacked into the surface of this lovely, warmed by the sun, smooth, slippery mud that would caress his rosy body. It took an hour to clean him off.
I decided that it was time to “cure” him of this. It was too embarrassing having him do this in public. It took a month but my diligence paid off. The only “habit” I couldn’t crack was the removal of one sock. Yes he only took off one.
It was at this time Michael Jackson started a mini fad of wearing only one glove. My eldest son insisted his brother was just copying Michael and dubbed him: “The Michael Jackson of Socks”.
I personally believe it was his compromise at having to give up the joy of removing all his clothes.