If you’ve been reading my blog for a while, you know that I try to post about autism every year on World Autism Day. Part of me really doesn’t want to write about autism. But part of me has to.
I have a sixteen year old son who’s autistic. In God’s wonderful mercy, our son has responded very well to various therapies and diet and has progressed from the pediatric neurologist’s encouragement, “Maybe he’ll learn to talk” to what our family calls, “eccentric.” But it’s been a long, long road. And I don’t always like to look back because it’s sometimes painful. But it’s marvelous too. And funny—if you don’t laugh in midst of suffering, you lose perspective.
One of the most difficult things during the first few years of Matt’s life was the lack of sleep. Matt only slept a few hours out of every 24. Sadly, many of the leftover hours were spent doing rhythmic crying.
Much of our life revolved around Matt’s sleeping. He’d be walking in the kitchen, fall asleep standing up and literally crash to the floor. Sometimes his face would smack the ground. But he was asleep. You’d think the crash would wake him, but it never did. Anything else, on the other hand, would. No one could touch him or even go in the room because if he woke up, he wouldn’t sleep again. Often not until the next day. My older kids remember me saying, “I don’t care if it’s lunchtime. No one is going into the kitchen until Matt wakes up.”
And, of course, my husband Calvin and I needed to sleep. So we’d put Matt in our bed between us (autistic kids can get into so much trouble without supervision) and turn on the VCR so Matt could watch Black Beauty—I’ve seen it 1000 times or more. He was completely fixated on the movie. And every time the fire started in the barn, Matt would wake us up. I remember Cal saying, “Matt, you know that Black Beauty is going to be okay. This is the second (or third) time you’ve watched this movie tonight. In fact, you’ve seen this movie multiple times every night for the past couple of years. I promise you, Black Beauty is not going to die in the fire.” When Matt was asleep, Cal and I would sometimes giggle and devise ways for Black Beauty to die.
But having Matt awake and watching BB was better for Cal and me than when Matt actually slept because Matt slept sideways. So the three of us would be in bed, forming the letter H. Cal and I would be huddled on the edges of the bed, trying not to fall out. We couldn’t go sleep on the couch because if we moved even a little bit, Matt would wake up. And during the winter when Matt would shove the blankets to the bottom of the bed, I’d tell myself I wasn’t cold because if I pulled the blankets up, Matt would wake up.
Thankfully, ten years later, we sleep better. Though I’ll still wake up cold and wonder why I didn’t pull up the blankets. I guess old habits are hard to break. And as for Black Beauty. Cal and I are never, ever watching that movie again.