Dear Friends and Family,
You may have noticed that I stopped sending out holiday cards several years back. Truthfully, I just couldn’t take the competition any longer. Even if my kids could sit still long enough for a family photograph, we would never look like the smiling, gleaming, Ken-and-Barbie-perfect families whose Polaroids come in the mail every year. (“Just look at those teeth!” I point out to my friend and confidante, Sue. “Orthodontics and bleaching,” she explains. “Normal kids don’t object to the tastes and smells of a dentist’s office.”)
With envy I pore over the pictures of slim, elegant teens in their prom gowns and tuxes, arm in arm, off to celebrate their adulthood in a socially recognized rite of passage. (“You mean they voluntarily wear those scratchy, stiff clothes?!!” “Yes,” says Sue, “and they attend a crowded and noisy party for fun, too.”) My son–I’ll call him Bob–spent prom night working at his part time job. “Time and a half on Sundays,” he informs me, ever the pragmatist.
Worse yet are the chirpy newsletters. Honor roll, star athlete, class president, model citizen–don’t these children ever rest? And the fulfilling family vacations: such precious times together. (“Don’t you believe it,” says Sue. “Family vacation is an oxymoron.”) And underneath all this cheerful news is the self-satisfied tone of perfect parents who revel in their ability to raise perfect children.
Well, I have my pride, too. And if my family’s accomplishments are not as conventional as most, they are hard won and honest. So here is my holiday newsletter:
It has been a quiet year, one of the quietest since Bob–and Asperger’s Syndrome–changed our lives twenty-one years ago. Gone are the temper tantrums of childhood, the moody isolation of adolescence. Bob finally seems to be growing into his six foot, hairy, man’s body, and his deep voice seems more self-assured. He has completed three of the anticipated five years he will need to get his bachelor’s degree, taking a course load he can manage. He attends a small local college, commuting each day on the T and coming home each night to his own familiar room. The campus is small, so he doesn’t get lost, and the department chairman knows and looks out for him. He successfully registered by himself and on time this year (surely there is, or should be, an academic award for this), and while he still misses assignments occasionally, he no longer needs me to arrange time extensions with his teachers.
Bob wishes he had one or two more friends. His best friend of thirteen years is away at college, and he hasn’t reached out to college classmates. A girlfriend remains a vague possibility for the future. “I have to be able to take charge of my own life before I can take responsibility for someone else’s,” Bob explains. When did he become so wise? Bob worries about his ability to live on his own. “There’s no hurry,” I say, trying for a tone of nonchalance. “You’ll know when you are ready. Just look at all the things you already know how to do for yourself: cooking, laundry, money management.” I try not to think of everything he still needs to master.
Bob’s sister “Lily” figures she must have been adopted. Her social radar is on 24 hour alert, and she travels in a pack of pals. Having attended both the prom and her high school graduation, she is heading out west for college, as far away from home as she can get without crossing an ocean. How does she feel about her brother? “I don’t try to hide him,” she says. “He’s just weird.” This from someone whose wardrobe is as monochromatic (black) as her hair is colorful (pink, at last sighting). Stubborn, determined, individualistic, she worries about fitting in and being accepted. She has a strong sense of justice and champions social causes, from abandoned cats to gay rights. Her emotional highs and lows leave me dizzy. Is this what having a neurotypical kid is like? Or has she, too, been shaped by her brother’s Asperger’s?
As for my husband and me: we are still married which, given the odds, is an accomplishment by itself. Faced with the challenges of raising Bob and Lily, we have learned to talk–and talk, and talk–and even sometimes to communicate. We squabble over the kids, we argue heatedly about how to handle situations, we worry endlessly. But, confronted by a threat to our kids, we stand shoulder to shoulder, a united front. I have become more forceful than I could have imagined, and he has become more patient. We are bruised, perhaps, but more fully human than we were twenty years ago. Now that the kids are older, we are finally able to go on mini-vacations together. We are confident that we won’t return to the remnants of a drunken party; Bob is too rule-bound to tolerate one. So Asperger’s in the family has its advantages. Perhaps someday we can be just a couple for longer than a few hours at a time.
I wish you all a happy and peaceful year. May you feel as proud and appreciative of your children as I do of mine. May you look beyond their appearance and accomplishments to their generous hearts and unique personalities. May their dreams loom larger than your expectations. May you be surprised, delighted and enriched by their gifts. From my family to yours: happy holidays.