Today is Worldwide Autism Awareness Day. I know it sounds trite, but EVERY DAY is Autism Awareness Day in my house. Oh, I try to ignore it, beat down the beast, but it’s always there. I’m reminded of it when I call Ryan’s name 4 or 5 times before I get any acknowledgement (if I’m lucky, and then I have to applaud), when I’m mixing dozens of vitamins and supplements into his ketchup, or when I have to stop him from climbing out second story windows…and about a dozen other things that happen so routinely I almost accept them as “normal”.
There are the things that are unpleasant, like toileting, but that’s nothing compared with his frequent and hazardous antics. Ryan has no sense of danger whatsoever. This makes caring for him very stressful—blood pressure elevating, hair raising stressful. I never knew there were so many dangers in a house for a 4 year old, and this doesn’t come from a place of ignorance, considering that he’s my fourth child. If my attention is diverted from him for even a few seconds, he quietly makes his escape and looks for something to climb, or tries to calculate how he might escape the environs of our yard.
Like many individuals with autism, Ryan’s sensory processing systems are either on overdrive or under-drive. His vestibular sense—what tells you where you are and where things are in your environment--is severely under-regulated. This makes him crave bouncing, spinning, swinging, and the big one—falling down. He likes to climb on progressively taller objects (furniture, the deck—we call it the “lanai” in Hawaii) and try to jump down. He’s hurt himself a number of times jumping off ladders or tall pieces of furniture. He scales our bookshelves like they’re a climbing wall. I’m waiting for the day he succeeds in climbing onto our lower roof and tries to jump to the ground.
I’ve said, “NO! Dangerous!!” so many times it sounds like a mantra around here, but I’m not sure it’s sinking in. And if I am successful in teaching him this behavior in our home is unsafe, can hurt him, will he know it is hazardous everywhere? Many children with autism cannot generalize information across people and environments. Just as a child may not know a cat is a cat is a cat, no matter what color or where it is, s/he may not generalize danger to a variety of places. Conversely, I shudder to think how I will teach “Stranger Danger” to a child I am trying with all my energy to teach to come when his name is called—that he should only do this with people he knows.
But what’s most daunting, is realizing we’ve only begun this journey. Ryan is only 4. He’s still small—I can pick him up and carry him if necessary, catch him when he’s about to take a tumble. I sometimes wonder how I will handle an older and bigger Ryan—one who lacks a sense of what can hurt him.