Thursday, August 02, 2007

Which disability is worse?

That is one of those nonsensical questions that seems to get asked a lot. Well last night I didn't decide which was worse, but I sure got a dose of what my (unacquired) tolerance is for certain behaviors. My son had a birthday party last night and had 5 friends over. 2 had Down syndrome like he does. 3 had other unknown to me disabilities. But the disability itself really doesn't matter, it is some of that behaviors that drove me nuts.

Eating with your mouth full and talking. I never really understood why this was such a problem. Now I know. Or maybe my level of tolerance has lessened. I watched the two young men sitting across me at the table as the food bits spewed out of their mouth in various directions. Not a lot- just a few tiny bits. But it drove me crazy. I wanted to tell them to close their mouth when they chewed and stop talking. I also felt like I wanted to run over to the other side of the table with the vaccuum.

I sat next to a young man on the couch who decided to go through a pile of items neatly stacked on the lower level of the coffee table. He also opened up cabinets in the kitchen and looked at them. And open up the refrigerator. He also went to the bathroom and I found myself wondering if he opened up the cabinets. This all made me feel uneasy. I was sure it was just curiosity and harmless, but I felt protective of the privacy I am accustomed to.

Another young man had one conversation he wanted to engage in all night. It would get interrupted and he would engage in other conversations, but as soon as there was a lag it was back to that same conversation topic. I wanted to say - enough already - but of course I didn't.

Another young man paced the floor back and forth, back and forth. I commented that he sure did like to walk. He said I like to walk OK, am I hurting anyone? I said no, of course not. But it exhausted me to watch him pace back and forth. I wondered did I need to do something to stop his desire to pace?

And another young man reminded me of my mom. He talks very quietly. My mom is sure she doesn't talk any different than before, but I am sure that her hearing aids have her thinking she is talking louder than she is. This young man didn't wear hearing aids, but I knew it was futile to ask him to speak up and I had to guess what he said from the one syllable I could hear in most words. I know I really have to give in and get hearing aids.

And lastly the young woman who perceived herself to be my son's date. She is that hypersexual person with a disability who misses the cues to slow down, back off, and take it easy. It is sort of amazing to watch my son be the object of affection of another - and I wanted to say - go downstairs and do it in private. But she really is just a tease. And my son really was in the party with everyone mood.

I found myself wondering - am I getting old that these really insignificant behaviors drove me to distraction? Am I so accustomed to my son's quirky behaviors that I've lost the ability to accept other quirky behaviors as well? I wonder what other parents say about Teddy that they wouldn't say to my face?

Maybe the things that drive me crazy about Teddy drive them crazy too? Or maybe they see those as endearing and behaviors I don't even think twice about are the ones that they find annoying?

Teddy is constantly asking about what happens next. Sometimes I want to scream (and do), forget about what happens next, enjoy now. But I know this is a monster I created. Early on I would tell Teddy what was going to happen for the day. Warn him about transitions. 5 minute reminders before we change gears. 1 minute reminders. Patience when he is still not ready. Most of the time I give him a running itinerary of the day, the next few days, the week without even thinking about it. But some days it seems like such a chore to answer - what are we going to do tomorrow?

The other thing he does that really makes me crazy is that he asks people questions he knows the answers to. Or questions he asked 10 minutes ago. I find myself saying, if you ask me a question, listen to the answer so you don't have to ask me again. Is this such a big deal? Does it really matter it takes 2 seconds to repeat myself? But sometimes I prefer to rant for 3 minutes about my having to repeat myself.

I 'm not sure this is a disability thing after all. We all have quirks. But then I am sure one of the quirks people think I have is that I interrupt and sometimes answer questions in what seems to be nonsensical ways- and it IS a function of my disability. I can't hear very well. Actually I am deaf. Not deaf in the way that people think where you can't hear sound at all - but in the way that I just can't make sense of what I hear too well. SO the other quirk is that I have to ask people to repeat a lot. I am sure I drive many crazy. And I wonder how many people say to themselves - when is she going to get those damn hearing aids!

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