Monday, February 14, 2011

The Symphony of Autism

This morning I'm reminded of a favorite line spoken by Richard Dreyfuss in Mr. Holland's Opus. As his wife massaged his back following a long day at work he said, "This is definitely not my gig, Iris." After only his first day on the job as a music teacher he was exhausted, discouraged, and beyond hope that he could ever teach a classroom of High School kids anything worthwhile. In short, it was not what he had signed up for.

I hear ya, Mr. Holland. Loud and clear. I hear you every morning that my 14-year old son wakes us up in the middle of the night because he can't sleep more than a few hours at a time. I hear you when my wife and I pass each other in the hallway with barely a mumble because we're too tired to communicate. I hear you when my son is stomping and screaming because he wants a car ride, it's 5 minutes before the school bus is going to arrive, and he has no other way to communicate his frustration. I hear you when I'm changing his pants because my teenager isn't potty trained, and may never be. In the movie, the Hollands raised a son with a hearing disability. And every time I watch the scene where Mrs. Holland screams, "I don't care what it costs, I don't care what some dumb doctor says, I want to talk to my son!" I cry in frustration. I get it.

Raising a child with autism isn't what I signed up for. An hour ago, I was sound asleep... but Zachary wanted breakfast. This just happened to be my day to get out of bed. As exhausted as I am from the weekend, my wife is just as tired. We had a good weekend; a healthy weekend both personally and professionally. But there's no time to celebrate; we have a job to do. We have a son that demands our attention 24/7.

It's funny the things that pop into your head this early in the morning (or late at night, take your pick). Call it God-inspired, or just my head working overtime, but I never made the connection before between Mr. Holland and the poem that has brought me through this incredible journey with autism so many times. It was written by Emily Perl Kingsley and it's called, interestingly enough, "Welcome to Holland." Emily, you nailed it.

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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. 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....and 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."

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

Happy Valentine's Day, Zachary. I love you, kiddo.

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