Friday, February 26, 2010

When Violence Feel Like a Good Thing

My wife had one of those days yesterday as the parent of a special needs child. One of those days when she couldn’t take one more helpful comment, one more piece of unsolicited advice, one more pooh-poohing of her anxiety and concern about our son. She was ready to rip the throat out of the next person who said, “It will be fine!”

Because we’re still in the adjustment period with his diagnosis of Tourette’s syndrome.

Even the most ardent fan of denial can’t meet our son these days and pronounce him “normal”. And as much as one would like, as a loving parent, to question a diagnosis (in this case neurological disorder number three, on top of anxiety and autism) the boy’s tic’ing like a time bomb, is the exact age of onset, and has virtually every symptom that describes the disorder. And not the mild version.

And as well-meaning as people are, we don’t want to hear: “he’s fine”, “you should be grateful to have him—he’s a gift”, “God wouldn’t send anything you couldn’t handle”, “there’s a lesson to be learned from this”, “he’ll grow out of it” (while potentially true, these years between don’t magically disappear, even if the tics do), and “don’t worry, it will all be okay”.

There is really nothing right to say. And the wrong things have been said so many times, it would almost be a relief to launch across the table at someone who made an insensitive remark and throttle him or her. Go ahead, make my day.

Then there are the suggestions of articles, books, websites, DVDs, music therapy, hippotherapy (which uses horses, not hippos), occupational therapy, diets, yoga, and lots of hugs. The sad part is the last of these is totally appropriate, except that he’s autistic, so he’s not especially fond of hugs.

It is safe to say that I’m not totally sane around this subject and my sensitivity about our son is off the charts. My wife had one of those days yesterday. No one was injured in the course of her or my pity-party, and while nothing will have changed by tomorrow, we might wake up in another stage of acceptance of this add-on challenge in our boy’s life.

Because ultimately, it’s all about his happiness. He could be tic’ing like a mad thing, develop pantaphobia (which as Charlie Brown fans know, is the fear of everything) and misunderstand social cues from here to kingdom come and it would “be fine” if he was basically happy. But he’s not happy a lot of the time. And that is the most important piece to put energy into, every day.

When he’s happy most of the time, that’s when it can all be okay.

1 comment:

Katie Donohue Bevins said...

You echo my sentiments exactly. There is nothing to say and yet people always think they need to fill the silence. Lately, the silence has been comforting -- much more than the comments you listed (been there, heard that!!) Best, Katie