Autism and Black Beauty

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.

Autism

April is Autism Awareness Month. I think I have mentioned it on the blog before, but I haven’t talked about it much because it’s my son’s story not mine. But I think other people could use the encouragement to perseverance of knowing Matt’s story. Our son Matthew is autistic. He was diagnosed when he was two years old. The doctor told my husband and I that our son might eventually learn to talk. Then, he handed us the card of a support group and told us to come back in six months.

The next years were hard. Our son didn’t sleep. Okay, he did sleep some—3 hours out of every 24. He sent the rest of the nights screaming. Cal and I took turns sleeping and rocking a child who tried to throw himself out of our arms. I discovered that if you miss enough sleep over enough days, you will have visual hallucinations.

The other kids learned to sleep through the screaming. They learned that Matt would be walking and fall over asleep. And where he fell, there he slept. And no one, on threat of death, would walk through the room where Matt was sleeping.

But as Matt’s occupational therapist once said, “Everything went right for Matthew.” He got an early diagnosis back when most autistic kids didn’t get a final diagnosis until they were five—and the brain was set. We started Matt on the Autism Diet, which had a huge impact on his communication abilities. Matt had an amazing occupational therapist who believed there was a way to “save” these kids, back when one no believed they could be helped. She explained why he banged his head against the wall, why he did rhythmic screaming, and why he’d flap his hands and spin and spin and spin. She taught him to put his hands out when he fell so he wouldn’t land on his face. He helped him strengthen the muscles in his mouth and tongue so he could talk clearly. And she taught us how to touch and comfort him without causing him pain.

And then, she gave all of us work to do. Cal, the kids, and I all worked with Matt—every waking hour. Jake’s job was to keep Matt from slipping into his own world, to force Matt to participate in the real world and interact with people. (If you know Jacob, you know that this is the perfect job for him—he’s, uh, tenacious.) The occupational therapist told us that Jacob was God’s gift to Matthew.

And God blessed everything we did, all the years of Matthew’s hard work and ours. Matt’s almost sixteen now. And he’s as “normal” as the rest of us. In fact, in what seems to me to be the ultimate irony, Matthew loves acting and last year played Puck in our local Shakespeare troupe's production of A Midsummer Night's Dream. Our goal was that Matt would be eccentric. And there aren’t many eccentricities he has left. Does he still have some things he struggles with? Yes. But so do I.

Yesterday, I read an article in USA Today about the latest autism research, particularly the work of Dr. Geraldine Dawson, whose research into the genetic links of autism we have been a part of. A new day is dawning for autistic people. They are amazing individuals with tremendous gifts. And I am so thankful that they now have a future that’s looking brighter.