Please enjoy this wonderful BEST OF from Halloween of 2008. Tell us your own Halloween stories. How do you modify, the ups and downs.
By Nancy Hokkanen
On Halloween my son's fifth grade class had a special math project, and I volunteered to help. Six pumpkins were handed out and groups of kids were to weigh and measure them, guess the number of seeds within, and carve them into jack o'lanterns.
Our table had two parent volunteers. The other mother also brought an adorable preschool sibling – whom I referred to as "him," until told "his" name was Karen. Maybe that was why I sensed a chill from the stone tiki face at the other end of the table.
The teacher explained the pumpkin activities and I expected that we parents might model some of the cooperative behaviors he'd laid out. But it seemed not to be. I could barely establish eye contact with the other parent, much less "Hi, my name is." Social Darwinism seemed to be the order of the day.
I decided that I could not bear to see the pumpkin lid cut improperly, so I seized control of the orange globe. Following the commandments in the Pumpkin Masters bible, I cut out an angled lid with a notch, eschewing the smoke vent. I pointed out to the children that the lid was the shape of a pentagon. Thus the territorial parental pissing match had begun.
Next the students scooped out the insides. Most of the kids enjoyed it, facilitated by my Martha Stewart rubber-handled ice cream scoop and Grandpa Rayno's fish scaler. I was feeling so au courant, so in my element. After all, I was the only parent wearing a jack o'lantern T-shirt.
Now, anyone exposed to autism knows about sensory issues. Big red flags pop up at the thought of handling wet, cold, stringy, clingy pumpkin guts… so carving pumpkins is something my son has avoided his entire life. When his turn came, he gingerly put his hand into the pumpkin and slowly got used to the sensation. He was.. he was… almost LIKING IT!
Unfortunately the other mother volunteer grew impatient, and eyed the clock. She started making terse comments to my son about his lack of technique. When her words failed to achieve her desired response, she started badgering him. "C'mon, reach in there and put some muscle into it! The other kids need their chance, too. If you don't speed up, we'll all be late for lunch!"
My mommy hackles raised immediately. When the other mother walked away to the sink, I followed her. "Excuse me – did you know that my son is autistic?" I said, quelling my rising anger.
"No, I didn't," the other mom said, looking a bit befuddled.
"He has sensory issues. He hasn't done this before."
Her eyes widened. "You mean he's never carved a pumpkin before?" she asked in astonishment.
Swiftly I tried to think of the words that would summarize what living with autism is like. How you don't hand your ASD kid a sharp knife and an oversized gourd and say "go to it." How you try one thing at a time, and don't force it. All I managed was, "When you're dealing with autism, you don't live like other families."
I don't recall her response, but I quickly made my main point. "Go easy on him. Doing this is big for him."
We returned to the table and she ratcheted down her intensity. Heck, she even gently showed him how to better grip the tool. I felt grateful for her shift in attitude. But there was so much more to explain….
By that time my son's mounting distress from sensory overload finally reached that pivotal point when escape is essential. Now I felt grateful that the other mother was there to direct the activity – I had to leave for a while. My son washed and dried his hands, and we walked the comparatively quiet halls for a break. We went to the autism room, but another student was having OT there.
Next we walked through the empty media center. I loudly greeted the lone adult there. She moved her mouth like a fish. I could not hear her. I said something else. Again, she moved her mouth like a fish.
My vocal volume decreased. "Oh, this is the library. I'm supposed to talk softly."
"But no one is in here," my son noted.
"Yeah," I agreed, wondering whether the librarian mouthed words at home to her family, too. "I feel like I'm in the Twilight Zone."
With nowhere to go we returned to the noisy, chaotic classroom. Each child had drawn a jack o'lantern face and as a group they voted on which features they liked best. Each one took a turn drawing an eye, eyebrow, nose or mouth, then carved it. My son put on his noise-reducing earphones and sat at his desk for a few minutes until he left for his pre-lunch break in the autism room.
When every group had finished, the principal stepped in (dressed in a navy policeman's uniform) and listened as each group gave a presentation describing their pumpkin. The other mother and her little costumed child had gone.
When "my group" stood in front of the class, the other mother's son was asked why one of the eyebrows had become part of the eye below it. "My mom screwed it up," he told the whole class. Immediately the teacher rebutted, saying that in this class students take personal responsibility for their actions. This time my mommy hackles were raised for the absent other mother, whom I had seen advising the children as they drew but allowed them to learn by doing it themselves. And I realized that under different circumstances it could easily have been my child up there, bad-mouthing me when I wasn't around.
Then in a whirl the room was picked up, supplies cleaned and put away, and the children lined up to march off to the lunch room. As I drove home, I thought about my former life in an advertising agency and how one might neatly sum up all the differences and challenges and rearranged sources of joy we autism families experience. I thought of the Halloween candy my son can't eat, the movies he won't watch, the haunted houses he can't handle.
I gave up. All I could think of was the generality I'd said before… we don't live like other families.
Nancy Hokkanen lives in Bloomington, Minnesota with her husband and 10-year-old son. She contributes to autism listservs and volunteers for Generation Rescue, A-CHAMP, and the Minnesota Natural Health Coalition.