March 25, 2013
I recently got my autism forum on Facebook all riled up by this query:
“Don’t love the stares that come with being an autism mom, but used them. You?”
The following true story (true confession) is adapted from the first chapter of A REGULAR GUY: GROWING UP WITH AUTISM along with some of the things I have learned from being on the receiving end of giggles and stares:
When I was eight years old, Uncle Russell came to visit. He was my mother’s cousin, but everyone called him Uncle Russell. He was twenty years old and had a severe case of cerebral palsy.
Russell was pigeon-toed as I had never seen before, causing his knees to face each other. He walked in a spastic, bouncing stumble. His hands were gnarled and bent at the wrist, fingers curled, in a way that my brother and I found impossible to imitate. His long neck was thick with muscles pulsating from the strain of holding his large, constantly moving head.
Despite his challenges, Russell always had a huge, improbable smile on his face. My brother Scott and I tried in vain not to laugh at him. Even my compassionate mother sometimes had to excuse herself to giggle in the kitchen with us.
“Laura, we’d better not laugh,” she said before going back to face poor Russell again. “God may give you one like Russell someday.”
Mom wasn’t superstitious, and I knew her warning was only meant to sober us enough to get our giggles under control.
Russell wore pointy red Keds and a baggy old cardigan sweater. His dark hair was greasy, and he smelled bad. I remember thinking that it would sure help if his parents dressed him nicely and cleaned him up a little.
Looking back, I realize that his parents did the best they could-the shoes were probably the only ones that fit his feet; cardigans are easier to get on a spastic child than pullovers; and bathing a young man with cerebral palsy is a grueling job for aging parents exhausted by endless caretaking.
Through the years, there were others I couldn’t help but laugh at, like the twin brothers summer camp when I was fourteen. One was normal and the other weird. The odd boy flapped his hands when he was happy; he’d rock back and forth and sing songs. My friend Ginny and I didn’t want to laugh at him, so did our best to avoid crossing his path so we wouldn’t blow it. One time his brother caught my self-conscious giggle and glared at me, deeply hurt.
I’ll never forget it.
When I was in my twenties and living in San Francisco, I was introduced to a nice-looking guy at a Christmas party. As he stood up to shake my hand, I noticed there was something funny about his legs. He seemed like a great catch-educated, funny and well-dressed. We sat down again and talked for a while. Eventually, he got my phone number. My excitement turned to dread when he got up to get us a drink.
He walked like Uncle Russell.
I stifled a nervous, embarrassed laugh and pretended to be laughing at a funny joke I had just heard when he got back with our drinks. Somehow I held it together for the rest of the evening.
He did call me for a date and I accepted. Before he arrived, I told myself that here was a terrific guy with a great attitude who had accomplished much despite his disability, and I should rise above my silliness, be a good person, have a great time.
But when I opened the door to greet him and saw him limping up the stairs toward my apartment, a bouquet of flowers shaking, I knew this would be our last date.
I called my mother the next day to share my date story. She didn’t laugh.
“I hope you were kind to him,” she said quietly. “It must be so hard for him. I’ll bet his mother worries.”
There was an awkward silence between us, and I felt like a superficial, spoiled brat. What could I say to redeem myself?
“If I had a baby with a problem,” I said, ”it would be hard, but I’d do fine. But I have a feeling my kids are going to be healthy.”
“So do I,” said Mom. “So do I.”
Some thoughts on the stares and the giggles:
1) It’s hard not to look. My son’s behavior (and my attempts to control it) can be stare worthy and even comical. People are curious.
2) When people are watching (staring) you have an opportunity to model best ways to deal with a person with a disability.
3) When people frown are display other disapproving behavior, try your best not to engage with them unless absolutely necessary. It could cause the situation to escalate and make things worse for your child.
4) If you snap (and you will), like the time a woman wouldn’t sit next to Matthew on a plane flight, it’s OK. Just reassure your child as soon as is possible.
5) Remember that most people are watching you are compassionate. Sneak a peek from time to time. Their smile of admiration will make your day.
In my experience, the world has become a friendlier place for families dealing with disabilities, including parent Julie Wagner Leonard:
The zoo in a city nearby had a special invitation-only open night for just disabled children. (Invites issued through area pediatricians). My sister and I took her seriously autistic son and his younger sister. It was fabulous. Hundreds of people there and no ignorant stares, just a few nods and knowing smiles. We could relax and enjoy ourselves. He had a fabulous time and so did we.
I recommend the following parent perspectives:
30 things people don’t get about kids and adults with cerebral palsy (but should) Ellen Seidman, Love That Max
What are your thoughts on this topic? Share them here!
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