Monday, May 30, 2011

Leavin' on a jet plane

Once a year, I let myself look long and hard at my son.  I try to imagine what life would be like if he didn't have autism.  

I picture him in his Little League uniform, or lounging on the sofa reading a book.  

I imagine all the friends he would have over to the house every weekend, and me complaining about the noise and the mess.  (But not really minding, no, not really.) 

I picture the trips we would take and the people we would meet.  I wonder if girls would be calling the house, and then giggling when I answer.  Maybe we'd fight about the length of his hair, or his inappropriate language or when he can get his first tattoo. 

He'd call his little brother a booger butt and Aidan would call him a jerk and I'd send both of them to their rooms. My husband and I would let him babysit Aidan, and then fret all dinner long about whether the house had burned down.

It's very painful, which is why I only allow myself to do it once a year. Otherwise, I just can't stand it. I accept my son and his autism.  There's really no choice, I guess, since it's not like he's gotten just a sprinkling of it.

It's my way of recognizing our loss, I think.  Oh, it's not the loss of some grand dream, like hoping he'd be President of the United States one day.  (Although I do have the doctored birth certificate to cover up the fact he was born in Canada of foreign parents.  Don't tell The Donald.)

I don't care if he doesn't get 1600 on the SAT or isn't the best athlete. Who cares if he's a doctor or a teacher or a cashier at Target? (Think of the employee discounts!) I never dreamed he would be a corporate raider or a famous actor or a politician.

I do care that he doesn't know how to make, or be, a friend.  I do care that he won't ever be able to live independently. He won't get married. We have a pill case for all the medications. I care that I have to write stories with pictures to communicate an upcoming trip or schedule change. He needs help bathing.  He’s twelve, remember. Twelve.

It bothers me that he doesn't know how to tie his shoes, that I still sometimes have to help him when he goes to the bathroom.  It hurts that I worry when I go out in public with him by myself; will he have a tantrum or lash out at someone else? Will I be able to handle him?  (I think I can.)

There's a sweet little essay someone wrote a long while back.  Having a child with autism is like expecting to go to Italy and winding up in Holland instead, she wrote.  And oh, she soooo wanted to go to Italy, but you know, Holland isn't so bad.  They have flowers, and sunshine.  (And probably a lot better services for individuals with autism, but I digress.)

And I expect that this was true for that woman.  (C'mon, it had to be a woman. Seriously.)

Then, a few years after that, I read someone else's blog about how having a child with autism is like expecting to go to Italy and winding up in Rwanda during the genocide and the war.  It was a fight, it was senseless, it was hard, painful, and it was horrible despite the beauty of the natural surroundings.

And this is the crux of autism.  It is all those things.  Each of us packs our own bags (and the baggage that goes with it, along with our toothbrush), and boards our own flight to an unknown destination. 

(It's horrible, this metaphor, a cliché, but stay with me.) 

Some of us land in Holland, some of us land in Rwanda, some of us touch down in Canada, and others in Serbia.

And it's not just all about your attitude or your perspective.  You can be as positive as you want and just have the worst situation.  Sometimes it's about the autism, and what course it takes, and how it truly, really, honestly impacts your life.

You don't get to go to Holland because you're a glass half full kind of gal.  Your family doesn't travel to Serbia because you're a pessimist at heart. 

Sometimes autism takes you on a hell of a detour and you can wind up in flowers and sunshine or you can land in the middle of a war zone.  Or you can freeze your ass off in Canada.  But you don't necessarily get to choose.

Sometimes, autism chooses for you.

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