Column for Tuesday, Sept. 7
Schedules fascinate him. Routines are sacred, to the point where any disruption strips him of all ability to concentrate.
Asperger’s crusade’ and first day of school
The first day of school at our house was so normal that we almost forgot we’re different.
It was a 30-minute whirlwind of where’s my Spiderman backpack and is his Tony Stewart racing T-shirt dry and did we pack lunch money and can you help him lace up those sneakers that just came out of the box?
Next came the three-mile ride to school, hugs and kisses and the zigzagging, broken-field run through a hallway overstuffed with spirited kids and greatly relieved parents.
Then he found his room and tiptoed shyly around a corner. And our only child was off, nudged by parents who adore him into a world that considers him smart and cute but doesn’t always understand him.
Our son has Asperger’s Syndrome, a form of autism.
He won’t mind my telling you that, because he knows we’re crusaders. We’re crusaders because, well, why do most people become crusaders? They’re touched by cancer, muscular dystrophy or a disorder with a long, winding name and hope to live long enough to eradicate it.
Parents’ bag of tricks
There’s no known cause. There also is no cure, only an intricate network of nooks and crannies, trial and error. Every time we leave the house and go to church, the supermarket or another haunt with a high degree of social stimulation, we enter with our invisible “bag of tricks” and whispered prayers.
Like any other kid, you surmise. Nope, much cooler, if I may say so.
We’re blessed. Of the estimated 1,200 autistic schoolchildren in Maine, ours is labeled “high-functioning.” It’s a gentle way of saying he is communicative, expressive and likely to enjoy a fruitful grown-up life. It also tells less than half the story.
Eighteen months into his life, he began sounding out words phonetically. At 3 years, he was reading us bedtime stories. At 4, creating and saving his own files on a word processor and surfing the kiddie version of America Online (under close supervision, of course). By 5, learning colors and numbers in Spanish, and replicating intricately detailed “You are here” maps from public buildings.
Yes, I’m bragging. Sue me.
Challenges are many. The same brain power that makes an Asperger’s child so gifted can break his heart and yours.
Loves those details
Schedules fascinate him. Routines are sacred, to the point where any disruption strips him of all ability to concentrate. I used to hate bureaucratic words like “refocus.” Now, refocusing comes naturally as breathing for us.
The hallmark symptom is trouble adapting socially. Children his own age, while polite and engaging at his school, can’t quite relate to him. And we’re teaching lessons about respecting people’s personal space and knowing when to use our “quiet voice” almost every day.
Then he flashes that pumpkin smile and those killer blue eyes and lets out that exaggerated laugh and we have no choice but to laugh with him.
And then we cry a little. They’re tears of joy and tears of uncertainty.
We feel other families’ pain when they struggle to gain help and understanding from their community. Two recently made the news.
In Cornish, a family filed a civil suit because their child was denied special education services. Last week, a Superior Court ruled that the rights of a home-schooled boy from Falmouth with Asperger’s Syndrome were not violated when he was banned from a public school playground for disruptive behavior.
Our battle to lead a “normal” life is slightly less contentious, but no less heart-wrenching.
At the end of Day One, he’s asked how school went.
“Good.”
We accept one-word answers. It means the question made sense. It also means, leave me alone, old man.
Later, he lets on that recess was fun, that he chased a girl on the playground. High-five for that, I say. He slaps my hand with authority.
Week Two begins today. He’ll try to concentrate hard enough, long enough to get his work done.
So will Dad.
Kalle Oakes is staff columnist. He may be reached by e-mail at koakes@sunjournal.com.
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