I remember my first day of high school. Not like it was yesterday, because today was long enough that yesterday feels like several months ago, but I still remember it fairly clearly. I agonized over my outfit, finally settling on a denim not-quite-mini skirt, pale pink socks, white Keds, and a pale pink ten-button shirt (and if you know what that is, I know how old you are). I had a spanking new shoulderbag, big enough to carry my flute, my lunch, and several pounds of schoolbooks. The permanent damage to my upper back was considered a small price to pay for the hipshot coolness of that bag. My hair was freshly spiral-permed in a way that expressed my true inner self, just like several hundred other girls at my high school. My bangs were teased within an inch of their life, my discreet mascara and pink blush were painstakingly applied, and I was ready for whatever this Grand New Adventure would offer.
More than once, I have wished for a similar beginning to this phase of my parenting. I would have liked a countdown to The First Day of Autism. I could have gone shopping and picked out the clothes that would give me the optimum emotional back-up for whatever the first day offered, and still make me one cool mama for the rest of the year. A new bag would have been a wise investment, because there's a lot more paperwork than I expected. And a new haircut is always a good idea if you're heading into something new.
One of the biggest fears of high school involved friends. Would my old friends be there? If they were, would they be too cool to like me any more? And what about all those new kids, the ones from the middle school across town that I'd never seen before in my life? They could be anybody! They might be mean and stuck-up, or there might be somebody just like me. How would I know? How would we find each other if we were meant to be lifelong friends? And if it rains and my bangs go flat, will they think I'm weird?
I didn't have time to think about friends in this new educational venture. I didn't know I was starting school, to be honest. Instead, I found myself suddenly sitting in class without a textbook, astounded to discover that my next project was due to start as soon as I got home to my son. Who had time to think about friends? Isn't this independent study?
It turns out it's not. The diagnosis of any child with a neurological problem is an automatic induction into an accidental community of parents who are, at least initially, every bit as confused and emotionally staggered as all the other "new kids". Current statistics indicate that about 1 in 175 children are diagnosed with autism spectrum disorder. Go to the state fair this summer and see how long it takes you to count 175 kids, and you'll get some idea of what this means.
At first it irritated me. Whenever anyone heard that Peter is autistic, the knee-jerk response was to tell me about someone they knew who was autistic. Depending on the sensitivity of the person telling the story (and the severity of their acquaintance's autism), this information ranged from irrelevant to horrifying. Now that I've had time to breathe a little, though, there is a welcome rush of recognition when someone says, "OUR son's autistic too!"
A few days ago I took the kids to the food court at the mall to celebrate Mary's last day of school. This was a risky proposition, and I knew it. The stores are awash with brightly colored products and advertising gimmicks. The voices of the shoppers, the piped-in music, the clatter of the restaurants, and the mechanical hum of the escalators swirl together in a bewildering cacaphony of noise. The food court involves a constant bombardment of smells, sushi and grilled steak and marinara and chocolate ice cream mingling over the constant underlying presence of Miscellaneous McDonald's. It was a prime set-up for a meltdown, but I'm quickly realizing that always protecting him from these situations won't help him in the long run, and in the short run it will guarantee me a first-rate case of cabin fever.
So we went, and by the time we all sat down with our various deep-fried delicacies, Peter was so overstimulated that his vocabulary had dwindled to his ear-piercing repertoire of squeaks and squeals. He was still having fun, though, so I kept feeding him French fries and tried to keep things at a volume that wouldn't bother the family at the next table. The dad kept looking surreptitiously over his shoulder at us, and I eventually realized that it wasn't because of Peter -- it was because he was a former neighbor, and we realized at about the same time how we knew each other. Talking over Peter's excited shrieks, we reintroduced ourselves and met each other's children. It turned out that Shawn had married a woman I'd gone to college with, and we nodded and smiled in a "small world" sort of way. Just as the conversation seemed to be winding down, Peter ratcheted up a few notches and I felt some explanation was required. Heather's response was unexpected, but it certainly explained her ease in maintaining a conversation punctuated with noises that would scare bats out of their caves: "Oh! Dylan's autistic too!"
The polite, distanced tenor of the conversation evaporated instantly. With that exclamation, Heather and I saw in each other's eyes the thoughts of another mother who wondered if diapers were forever. We could see the faint lines on each other's faces, etched by hidden fears that our sons would never know the joy of holding their own sons in their arms. We saw the grey hairs that were the result of too many people looking at our little boys and thinking almost audibly, "Why doesn't she DO something about him? I would NEVER let my child do that in public!"
As our conversation continued with new enthusiasm, we discovered that our stories took a shorthand form. "He bangs things." "Yes! Everything's a stick!" "We thought he was deaf." "But his hearing was fine, he was just tuning us out!" "He squeaks!" "He doesn't talk at all." "Barf!", I offer. Laughing, she says, "It's poop at our house!" Our eyes meet again, and we see that along with the fears, here is another mother who has guiltily laughed herself silly at something weird her child has done. We both grab hungrily at humor wherever it comes, because some days have precious few funny moments.
We talk a little longer, our highly verbal daughters becoming fast friends by the instant-photo booth and our sons happily enmeshed in their own private worlds. Dylan entertains himself by rolling little balls of paper from a covertly obtained magazine. Peter has removed the metal swinging door from the front of a gum machine, and Shawn comes to my rescue and replaces it with a minimum of fuss. Heather and I exchange phone numbers and e-mail addresses, do our best to clean up the ketchup-smeared war zone of our tables, and make sure our children have everything they came with. We smile and say, "We should get together!" And I think we probably will.
I was not having a good hair day. I was wearing a plain T-shirt and a skirt that was coming unravelled on the hem. I didn't look especially cool, and my purse with its amazing Kleenex collection was probably flopped open on the table, barely missing the puddles of spaghetti sauce on the trays. If I had bothered to put make-up on that morning, it had certainly fallen off hours earlier.
Funny, how none of that seemed to matter. Maybe she isn't just like me, and maybe we don't have a lot of the same classes. But all of a sudden, my new school doesn't look quite so scary.