Thursday, June 24, 2010

Our trip

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

I've been reading this poem a lot lately. It's in more than one of the books I bought on ASD and in a few I've borrowed from the library. I kind of feel these days that it is really accurate for us. I freely admit that I never expected to have a child that would be attending speech and occupational services so often let alone a child with Autism. But I really wouldn't change anything about him. He may have major meltdowns (what 2 year old doesn't?), he may kick, bite, hit and pinch me regularly but he's still my Lex. He sings "rolly poly" and "icky sticky" with me all the time (not the actual words but he shows me the hand movements he learned at daycare), he loves to snuggle with me and we run around like a couple of crazy people in the evenings to help wear him out. I'm sure if you ask me in a few years I will have very few recollections about the tantrums (with the exceptions of the scars he has left me with) and many memories of all the sweet, fun things we do.

I'm rather enjoying our trip to Holland. Italy has nothing on this.