Life With A Side Of Autism

LIFE WITH A SIDE OF AUTISM

Tuesday, October 4, 2011

Saying Goodbye

Nearly eight years ago, I said goodbye.

Goodbyes happen every day, and not all of them are bad, you know. There are the garden variety goodbyes you give to your neighbor, your children as they head off to school, your spouse as he climbs in the car. Then there are the harder goodbyes, those of death and separation and failed love that stamp your soul and leave it forever marked. Don't forget the good goodbyes - several past jobs and bosses come to mind, a few acquaintances, and some unwanted pounds around my middle.

Nothing prepared me to say goodbye to my child.



Oh, it's OK, he didn't die. Not the way you're thinking. What I said goodbye to was the child I thought I had. The one who was going to grow up to be football player, or a doctor, or a musician. The one who was going to have a heck of a time getting a word in edgewise around his sister, whenever he learned to speak properly. The one who was going to make one hell of an engineer, with the intricate block towers he made, the concentration he put into each project. The one who would throw his arms around me sometime around the age of two, just like his sister and say "I love you, Mommy!" You know, the child I planned for.

What I got instead was a child who spent most of his days calmly ignoring the world around him. A child who tantrumed often, and for no discernable cause. A child who fought me when the season changed from winter to summer and we had to put on his first short-sleeved shirt. He cried and shrieked for over an hour, trying frantically to pull the sleeves down to cover his wrists. Eventually, he adapted, but we went through it all again in the fall, when I put the long sleeved shirt on him and he screamed and pushed the sleeves up. He had a great sense of humor, but no words to convey it. A rare glimpse appeared here and there, and it was startling when it did. I got the child that was different from all his friends on the block. The child who didn't even have friends, though they tried to have him, sometimes.

I got the autistic child.

The "I love you" didn't come for a long time, either. I had to learn to listen to what he was doing, not what he was saying. A very wise seven year old girl once told me that you can understand him fine, as long as you don't pay attention to the words. She was right. So I said goodbye to everything I thought I knew about communication, and I learned to talk without speaking, to listen when the words aren't there or are unintelligible strings of movie dialogue, memorized in their entirety after only one viewing. I said goodbye to certain expectations, and he taught me to say goodbye to lots of preconceived notions and outdated norms. On many occasions, I say goodbye to my patience, but it always returns, a little tattered, but ready to do battle again.

There's a certain heartache when the kids at the bus stop are eagerly discussing SpongeBob and Transformers and David prefers to walk around the stop sign, over and over instead of taking part. The heartache turned to a piercing pain when one of the boys called him stupid once. "Don't let him play," he said. "He's stupid and he'll mess the game up." His mother was horrified, immediately taking her son to task, her apologies endless as she tried to explain to the mother of the special needs kid that her child was only momentarily insensitive and not a total lout. I know that. And he's got a point. David would probably only mess up their game.

In moments like that, I try not to feel outrage or sadness on David's behalf and try to focus instead on what he's teaching them, inadvertently. Patience. Compassion. Tolerance. He's taught me more about these things than I ever thought possible. I think back to the me I was before he came along. I had a beautiful little girl, chatty and bright and endlessly imaginative. We could go out to eat and she'd mostly behave. We could see movies as a family, walk through museums basking in her quiet wonder, laugh and exclaim as she dressed up and put on pretend shows for us, using the curtains on the french doors at her backdrop. I had it all, and I had it through my kid, who was practically perfect in every way. She was the center of the universe, my universe, where everything turned out even better than I'd hoped it would.

Then, with one big punch to the gut, I stood there in the office of the intermediate unit, clutching the paperwork, listening woodenly as the developmental psychologist outlined the educational plan, the bus schedule, the special ed teachers, the time and effort and work that we hope - we hope - will pay off in the long run. I remember thinking that I wished I know how long a run it would be. I needed to know he'd be normal. I needed to know that I wouldn't be the mom of a special-ed kid who rides the short bus forever. I needed to know that my kid would be like every other kid, a kid I could brag about, a kid who'd grow up to be something incredible, a kid I could point at and say "Yeah, he's mine!" with a world of pride in my voice.

I said goodbye to most of that, and surprisingly - it's one of the good goodbyes. What the heck is "normal" anyway? And why in hell would I want him to be just like every other kid? The thought is obscene - he's David, unique and utterly special to me and to all who know him. Best of all, I have a kid that I brag about - did you know he can rock the hell out of Wii bowling and Skee ball? And he sings beautifully. The other day, he wrote an entire story for the first time. It took him nearly 30 minutes, then I hung it on the fridge and we danced around the kitchen in celebration. I have a kid that will grow up to be something incredible. A teacher. A friend. Who knows what else? Just as before, though it took me a while to realize it - his possibilities are endless.

Yeah, that kid is mine. All mine.

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