Living with autism
School is back in session, and once again I’m grateful. As the parent of an autistic son, I’ve become comfortable with the notion of school as not just a learning opportunity for Harrison, but also as respite care as well.
When Harrison is back in school, I have a block of time to work. It’s quiet. I can even take some time to relax.
Because I’m around more than my wife during the work week, I’ve been told I should write more about my experiences as the parent of an autistic child. My stories could make for a great book, friends say. They tell me the subject is timely and that it would be therapeutic. But I have difficulty sharing these experiences. It’s a little bit painful.
Practically anything you can write about the autism experience would focus on the challenges. Anything else would be like putting a “My Child is an Honor Student” sticker on your car. Sure, I could brag about how well Harrison does in school or about his uncanny ability to quickly figure out just about any electronic device handed to him. He has musical and artistic talent. Of course, that’s about as riveting as one of those holiday form letters. I am also not a whiner by nature, and I don’t want to complain.
I prefer capturing Harrison in pictures rather than words. In photos he runs free outdoors, hikes, skis and explores; he learns to shoot a slingshot. Nobody knows about the hour it took to get him outside. The tantrum over a pebble in his shoe or sticker in his sock. Or about the two miles of shrieking after a tumble on the trail. A picture is always purely of him.
Some parents will read this and respond with the usual “Oh, my kids did that.” Right. But not every day. Not every hour. Not forever. Parenting is a full-time job. Parenting an autistic child is a full-time job with overtime and little hope for retirement.
In the summer, we go to the local farmers market. Most people at the market generally welcome Harrison despite the occasional disruption. One such Thursday, Harrison’s second-grade teacher from the previous year was there.
Harrison sometimes has problems processing when he sees people in places where they are out of context. When his teacher said "Hi,” he flung himself down, pulled his hat over his eyes and started screaming loudly and crying. “She’s a stranger,” he shrieked. "I don't want to see her."
I didn't know how to react. The teacher — without question the best of his entire school experience — was totally cool, though she must have been embarrassed by the outburst.
After swimming lessons at the pool this summer, Harrison was running around outside while I spoke with his instructor. Suddenly, he tripped and fell right on his face on the cement, cutting his nose, lips and mouth. The screaming was almost unbearable as we took him back inside to clean up the wound. He continued to scream all the way home, a 25-minute drive in an already noisy Subaru Forester.
Screaming is actually just part of life around here. Often, upon awakening, Harrison screams. Anything he feels like protesting — eating breakfast, the battery running low on his iPad, being told not to scream, whatever — he protests with noise. Over time this noise has a tendency to scramble a person’s brain. If you don't believe me, trust our dog, who has officially moved in with our neighbor.
The day before school started this fall, we went shopping for school supplies. What could have been a fun shopping excursion quickly became an epic nightmare with loud outbursts over everything from a game of Angry Birds to USB drives and choosing only one pencil box, to tantrums about candy, swiping the debit card and signing the electronic pad at the checkout. He also disappeared for a few moments while we were in the store, which was frightening until I was able to locate him.
Back at the car, I sat down in the front seat with the door open and my feet still parked on the pavement. I sat that way for quite some time before gathering the energy, strength, courage, or whatever combination of all those things I needed to finally pull my legs into the car and drive on. I felt exhausted.
The next morning, Harrison would get on the school bus. I would get back to the job of managing a ranch and mining my brain for words. Some of them would be what you just read.
Note: the opinions expressed in this column are those of the writer and do not necessarily reflect those of High Country News, its board or staff. If you'd like to share an opinion piece of your own, please write Betsy Marston at firstname.lastname@example.org.