In the last nine years post diagnosis, our family has made three significant moves to new school districts or cities. Each move was driven primarily by Jeremy’s schooling needs. In this regard, perhaps we’re no different from many modern families.
After an extraordinary run of six years at our last school district, I thought we’d never experience such marvelous inclusion again. Moving to Cupertino, notorious in the Silicon Valley for being a highly academic-oriented (read: high-performing, high-pressure) environment, I ratcheted my expectations lower. I didn’t expect a repeat of the warm and fuzzies of grade school inclusion.
Things are just different here
Our house is a straight, five-minute drive from Apple Inc. headquarters. A commute several of our neighbors make, daily.
This is the city that produced a 2009 national spelling bee finalist. As I understand it, one of the local middle schools consistently places at an annual regional competition.
This is the city where a brilliant high schooler won the Intel Young Scientist award for her research on cell phone battery charging. She went on to Harvard.
I’m not disparaging any of it. Kudos to these extraordinary students and their parents for their drive, discipline and excellence. Me, I struggle with keeping track of my kids’ homework. There’s good reason why my kid will not be participating in spelling bees. It takes two to uber-tango, and this mom is relieved if she can even get the yellow folder returned to school on Fridays. With all required papers in it. Completed. And signed (for goodness sake, I keep forgetting to sign!)
Helicopter parent, spelling bee coach, testing partner, drill sergeant, locally-grown-organic-lunch-packer, orchestra and academic decathlon chauffeur?
I intrinsically understand and appreciate all this. I come from a culture that idolizes academic and financial success. Growing up, the options were quite simple, binary even: “You study. You become doctor or lawyer.” My generation jokes how our parents gather with friends for morning coffee at McDonald’s, to mock lament about their grown children,
“Oh, my poor son study at Harvard. Too busy to even call home!”
“My lawyer-daughter she make partner, she buy me this Gucci bag. Too big, too heavy to carry!”
“My son-in-law. So disobedient. He insists take whole family to vacation. No rice in Europe! What I can eat whole time?”
Being a “good daughter” or son meant earning bragging rights for our immigrant parents. However, according to this worldview, I have failed my parents. Autism therapy expenses being as exorbitant as they are, we can’t afford luxury items or Europe for ourselves, much less for Jeremy’s grandparents.
My performance as a “good parent” has also been dismal. My son struggles with basic speech, comprehension and interacting with people. As a child significantly affected by a lifelong disability, he will likely not attend Harvard. He’ll never gift me with a designer handbag, nor drag me against my will to an all-expense paid vacation.
And as a good son, my child has already “failed” me, too. Just as I have resoundingly “failed” my parents.
Perhaps we should redefine Good. Or at least make peace with Good Enough.
Slackers… by choice
On my typical son’s first day of after school pickup, I noticed a fleet of vans flanking the curb. Not family minivans, but large passenger
vans waiting to whisk students away to afterschool tutoring programs. No hanging out, video games or loitering at the Gas N’ Sip for these kids. As children of employees at the world’s elite tech companies, they are the high achiever progeny responsible for driving up API scores into the quadruple digits.
Me and my kid? We just went home. We grazed on cheap, non-organic snacks and putzed around the house. “Kid, you’re seven years old. Go outside and play in the dirt until dinner.”
From time to time, my genetic makeup struggles with the compulsion to enroll him in Kumon, speech and debate, academic enrichment, karate, piano, soccer, Boy Scouts, baseball, and chess. Simultaneously. Just like everybody else seems to be doing in this area of the country.
Hey, I want my kids to succeed, too.
At some point, we may adjust our counter-cultural stance of emphasizing playtime, making friends and creative pursuits. It did take nine years of intensive autism parent training to reprogram our cultural DNA, away from rote memorization and drill-based learning. For the ASD parent, social skills, executive functioning and dynamic thinking are intensely coveted, not to be taken for granted. We pay dearly for our kids to gain any measure of these skills.
And what is all this Common Core stuff anyway? I didn’t even know about Uncommon Core or Common Peripheral. I’ve only been a Special Ed parent all these years. My world has been exclusively IEP’s. I’d be thrilled to bits if my kid becomes functional in the basic Three R’s: (W)riting, Reading and (A)rithmetic.
But thanks to our younger son coming up through General Ed, I now have to play in the typical parent sandbox, too. Now, I’ve got to learn “normal” parenting, too. Evidently, this involves learning typing in Kindergarten. And they’re phasing out fiction from the curriculum?? “After all, they’ll only be writing non-fiction once they get to college and enter the marketplace….”
I really don’t know about all that.
Preparing my kid for the world, preparing the world for my kid
It’s only been four months since we’ve lived here (and realistically, inclusion does get harder as kids get older). But there have been glimmers of encouragement. Precious, glorious moments that hint: Maybe we’re on to something here. Perhaps the almighty, full-tilt pursuit for hyper-ability has something to learn from the humble(d) world of disAbility… or different-ability.
Stay tuned for Part Two of “Why I Don’t Mind Being a Dis-Abled Family in a Hyper-Abled World.”
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