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Friday January 25, 2008

When your kid is autistic, is a ‘normal’ bar mitzvah too much to ask?

by irena smith

I’m pretty sure that regular people do regular things on the morning of their eldest child’s bar mitzvah — have coffee, get dressed, maybe crack a few nervous jokes. But I wouldn’t know.

The morning of our eldest child’s bar mitzvah began with his adamant refusal to get out of bed or to take a shower. Seven in the morning was too early to get up, Jordan shouted. It was a health issue; we were depriving him of urgently needed rest; he was not — not — going to get out of bed before 8:30. Period.

We were due at Lucie Stern Community Center in Palo Alto at 9 a.m. sharp for the final run-through, so things escalated quickly and catastrophically. My husband, David, stormed through the house with a towel around his waist shouting, ”This is not going to be a special ed bar mitzvah! I am having a regular bar mitzvah with a regular kid or I’m calling and canceling the whole thing!” He snatched the phone from its base while Jordan hung from his arm howling “No! No!” and I stood in the kitchen doorway, one shoe in my hand, my eyes squeezed shut, thinking “Good luck with that.”

Jordan was diagnosed with high-functioning autism when he was 2 1⁄2, which was just one of the many reasons he should not have been having a bar mitzvah. True,

he had made tremendous progress. He was now in (mostly) regular ed, he swam competitively, he rode his bike to school. But he was still disorganized, spacy, a loose cannon. He struggled in school, he threw tantrums — it was hard enough to get him to do his homework, let alone learn a foreign language with a different alphabet.

Other reasons abounded. We don’t belong to a temple. Aside from celebrating Passover and Chanukah and occasionally lighting Shabbat candles, we’re not particularly observant. A bar mitzvah was an empty formality; no one would care if we had one or not. Above all, Jordan had no discernible interest in Jewish history or culture, and once threw a tantrum because we weren’t Christian and couldn’t have Christmas like everyone else.

But for some deeper, truer, completely illogical reason we decided to forge ahead. We found George Rubin, a Hebrew teacher who lived four blocks away, spoke in calm, measured cadences and had the patience of Job.

Predictably, Jordan yelled about learning Hebrew and having a bar mitzvah. He lost his index cards with the Hebrew characters. He had too much work and no free time, he said. It was a health issue. We were mean and demanding. No one else had to have one.

In situations like this morning’s, David and I usually muttered “mah nishtanah?” under our breath. Why should this night (or morning, or afternoon, or evening) be any different from any other one? Or this tantrum from any other tantrum? Or one excruciatingly annoying (or oppositional, or silly) behavior from another?

Except today was different. In three hours, 45 people would gather to watch Jordan become a bar mitzvah, and somehow we would have to get dressed and get out of the house and behave like regular people.

And somehow, the way things usually do, it all came together, and there was Jordan, freshly showered and dressed in a shirt and tie, at the front of the room with George, reading — beautifully — in Hebrew and occasionally darting a shy smile at the roomful of people beaming back at him.

There was David, pointing out in his speech that at least one of the reasons for having a bar mitzvah was to give your parents the opportunity to be proud of you in public. There was my mom, whispering, “I never in a million years thought I’d see this day.” There was my grandmother, whose entire family had been exterminated by the Nazis, kvelling like crazy in the front row.

The bar mitzvah didn’t change who Jordan was. He was still spacy, disorganized, a loose cannon, which is why it was that much more extraordinary. It made me think, in fact, of a line from another holiday, one that came on the heels of Jordan’s early December bar mitzvah, a holiday that celebrates light in a place where there should have been darkness.

The line is “nes gadol haya po” — a great miracle happened here.

Irena Smith lives in Palo Alto and is a lecturer in literature at Notre Dame de Namur University.

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