The surest way to corrupt a youth is to instruct him to hold in higher esteem those who think alike than those who think differently.
Loath as I am to admit it, before I had children of my own, I identified with the precociously perceptive child narrators that litter English literary fiction. You know the type; those ubiquitous, dewy-eyed prodigies who contemplate the nothingness of being by the age of six and critically unpack political rhetoric before they cut their back molars. Back in my Lamaze days I secretly coveted such a child, and I didn’t immediately appreciate the irony when fate blessed me with a son who couldn’t string four words together by the time he got to kindergarten, and whose first complete sentence consisted of asking me in the line up at the bank—in those high-pitched ringing tones that only a five year old can muster—“mom, do you have a hairy vagina?”
Subject, verb, indefinite article… I should have been thrilled.
My son, you see, has Autism Spectrum Disorder.
Back when I was Feng Shui-ing the nursery and gossiping over steam-fired decaffeinated ginger tea with my new-mother friends, I didn’t even realize that autism was a spectrum disorder. Back then, I just thought I was a bad mother.
“That’s it,” I said to my husband, the fifteenth time our toddler trashed his room. “We should skip the education savings plan and start a bail fund.”
Our son missed every milestone. We waited with baited breath for his first words, but they never came. When he finally started solid foods, he would eat only three things. He still eats only three things. He stripped off his clothes on a regular basis, and he couldn’t tolerate footwear of any kind. The day he woke to find our west coast yard covered in snow, he sobbed for the rest of the day.
Repeated trips to the doctor didn’t shed much light on things. Our kindly old GP would smile at me encouragingly and pat me on the back. “Don’t worry dear,” he would say, “boys develop slower than girls.”
Eventually I grew tired of meaningless platitudes and battered my own way into the local psychologist’s clinic.
“I’m sorry to have to tell you this, Ms. Baier, but your child has autism.”
With those words, I took my first tottering steps towards relinquishing my hold on the idea of “normal.” And then a few more, three months later, when my daughter lost her language and her eye contact, and started walking on her toes. Here we go again, I thought, do not pass go, do not collect $200, go directly back to square one…
On we soldiered, naïve to the fact that the things you push hardest against have a way of pushing back.
With intervention, my kids began to close the gap between reality and representation. Together, we made the connection between a physical apple, and the spoken word “apple” although we paused on every single stepping stone along the way, bridging the journey with half an apple stuck on a piece of cardboard, a photograph of an apple, a painting of an apple, a line drawing of an apple, and finally, the written word “apple.”
Eventually—it felt like decades, although it was in reality just a few years—we made enough “progress” for both kids to transition from their respective special needs programs into the regular school system.
That was our first foray into the abstract world of religion. If I remember correctly, it was my decision to enroll them in the Catholic school. We had to jump through a number of hoops to accomplish this, the first of which entailed having them baptized in the Catholic Church. My daughter actually let me dress her up in scratchy white lace, a miracle in itself, but once we got to the church, the set of her lips eclipsed her limited language. She didn’t need syntax; the steely glint in her eye said it all. First came the flapping. Then the rigid set of the shoulders. Next, the screams. Rough translation:
“…there is no way in hell the old fat guy in the black dress is going to stick my face in the water fountain, thank you very much…”
The baptism coincided with an invitation for my husband and I to re-enter the church. We had wed years earlier on the beaches of Maui in a private ceremony where a vagabond we found sleeping on the beach agreed to be our witness. But it had been a civil ceremony (ie, godless), and not recognized by the Catholic Church, and naturally the priest took advantage of the baptism to try and strong arm us back into the flock.
That’s sheep for “no thanks”.
I myself worship at the altar of red wine. It’s far more soothing on the psyche.
But I digress. Where was I?
It happens all the time since I had kids. I am like that dog in the Loony Tunes cartoons, endlessly chasing balls from a pitching machine,
(…awhere did it go, awhere did it go… there goes another one… awhere did it go…)
except that I am chasing my own thoughts, unable to pin any one of them down for more than a paragraph.
Back to the Catholic school.
What a disaster. Ever tried to explain Jesus on the cross to a kid with autism? Allegory is lost on autistic kids. Where Christians see the resurrection and promise of life everlasting, my kids just can’t grasp the metaphysical concept of a crucified God—they insist on seeing what’s right in front of them: the gruesome reality of a medieval torture scene.
Easter that first year was the start of the “why” questions at our house. We had skipped the whole pre-school “why” phase, because for years, both my kids lacked the neural connections required to understand the complex linguistic concept of causality.
There was, of course, a plus side to this: for years I had managed to avoid that banal perennial catch phrase, “because I said so, that’s why.” We worked on “what” from age three to age five, and only tackled “when” once we got to kindergarten. So I missed the requisite training in handling “why is the sky blue?” or “why do the birds sing?” Instead, I got “do you have a hairy vagina?” in the bank. And by the time my son finally reached the “why” phase in the second grade, the questions had taken on a philosophical depth that had no answer, and certainly not an answer that could be couched in language accessible to an autistic seven year old.
“Why did Jesus get nailed to the cross?”
“Because I said so, that’s why.”
But that is the nature of autism. What my kids see, by definition, is—must be—the way things are. I made the mistake, once, of buying my daughter a seven pack of panties with the days of the week printed on the front, each day corresponding to its own Disney Princess.
“Get dressed, kiddo.” I hand her yellow panties with a primping mermaid on the front.
Her eyes fill with tears. “But it’s not Wednesday.”
There is no other identifiable group in the world for whom getting dressed is a twelve-step program. But let’s face it, I have no one to blame but myself; I bought the panties. They were on sale.
But then something happened that I hadn’t anticipated: I started running interference in my children’s “therapy”. Psychologists, occupational therapists, speech pathologists and behavioral interventionists whirled through my house on a tornado of “shoulds,” leaving in their wake an acute feeling of inadequacy. Despite their well-meaning intentions, the message of all these professionals boiled down to one single idea:
“Hey, kid, you’re doing it wrong.”
I began to balk at the therapists’ repeated efforts to force my beautiful square pegs into proverbial round holes. I found myself actively countering their valiant efforts to turn my kids into paragons of the North American moral majority. I looked more closely at all the cool, quirky and creative things my kids could do, because of their “disability,” not in spite of it, and I began to value autism. I began to value diversity over conformity, uniqueness over homogeneity.
And I began to teach my children to do the same.
When, I asked myself, did the right to original thought become the exclusive property of those individuals deemed socially adept enough to “handle it?” In devising educational strategies for so-called difficult students, why did we divorce “how to think,” from “what to think,” along the fault lines of traditional intelligence?
Watching my children over the last sixteen years, I have come to realize that non-conformity is directly proportional to courage and conformity is inversely proportional to creativity. My kids simply don’t see the value in pretending to be someone else, and they refuse to admire the emperor’s new clothes. Not for a sticker. Not even for an “A”. For kids with autism, things don’t represent, they simply are. They incorporate Zen living into their lives without even knowing what it’s called, and it makes me wonder—who should be modeling who?
Yes, children with disabilities need to understand, to the best of their ability, the physical and social world that surrounds them, but when we insist they embrace that world as superior, we disenfranchise them all over again.
© copyright 2012 ingrid baier all rights reserved
Absolutely amazing :o) All the best Ingrid!
I agree completely! Why too does society expect us to always be calm and happy or resort to medication? We can’t even tolerate moodiness any more.