Three is not a number usually associated with the Jewish traditions. It certainly doesn't appear in the Bible as often as seven or forty. But when my daughter Jenny was born, the number three loomed large in my mind's eye, foreseeing a trio of future life-cycle events: a naming, a Bat Mitzvah, and a wedding.
The naming went according to schedule. But other milestones, specifically those having to do with development, were markedly delayed. Jenny was four and yet unable to engage in the prattle typical of children newly able, however simply, to report their impressions of a freshly discovered world. There were other things as well, telltale neurological indicators that hinted at the undeniable fact that all was not well. Even after allowing for the fact that children do not always progress according to predetermined timelines, it was apparent to both my husband and me that Jenny was--different. In fact, we held on to that adjective for a long time after it ceased to be entirely accurate, because it was infinitely easier to accept than that other word that described our daughter, autistic.
Though still not high on the list of well-understood disorders, in the early 1980s, when Jenny was born, autism was an even more esoteric label than it is today. It commonly evoked the image of a spinning child totally out of touch with her or his surroundings. In fact, autism is a syndrome of neurological abnormalities affecting the use of language, ways of relating to others, and sensory perception. The level of impairment varies significantly among those afflicted with the disability.
When the doctors relayed Jenny's diagnosis, my husband and I were devastated. As parents, we grieved for the death of dreams we had nurtured for our daughter. But the more Jenny developed into her own person, the more we saw behaviors symptomatic of autism as simply characteristics of her own unique self.
When Jenny reached the age when a Jewish girl usually prepares to become a Bat Mitzvah, I began to think what would, and would not, be appropriate for her. I would necessarily be making most of the decisions regarding the liturgical and ceremonial aspects of the Bat Mitzvah, as my husband is not Jewish. I knew instinctively that the standard ceremony, a Torah service modified to accommodate Jenny's "deficits," would not do. I sought a service that would highlight her gifts and validate her unique essence.
It seemed to me that the Havdalah service, during which we bid farewell to the Sabbath and welcome the coming week, would be perfect for my daughter. In that ceremony, all five senses are involved: We are delighted by the pungency of fragrant spices, cheered by the taste of sweet wine, warmed by the heat of the flame, inspired by the sound of ancient melodies, and comforted by the sight of family and friends. This service would not only open a window of accessibility through which my daughter could embrace an aspect of Judaism already sanctioned by custom, but with its joyful celebration of the senses through which she lives so intensely, Havdalah would confirm Jenny as she is, a perfect creation of God.
But the rabbi of the synagogue to which I belonged did not share my conviction. Because the Bat Mitzvah ceremony I envisioned did not include a Torah service, I was told it could not be held in the synagogue. I still recall the interview I had with the rabbi, because it brought to the surface a truth I had been trying to hide from myself for years.
"What Jenny knows about Judaism, she knows through her senses, and not through law and intellect. And because a Torah service would have no real meaning for her, it could, perhaps, even be said to trivialize Torah."
After pausing, I continued with words that I had, until that moment, kept locked within the depths of my being:
"Rabbi, it is unlikely that my daughter will ever stand beneath the bridal canopy, or that I will ever attend the baby naming of a grandchild. Jenny is my only child. This will be the only major Jewish life-cycle event she will ever remember. Can it not be one that will be the most meaningful to her--and to those who love her?"
After uttering these words, I was momentarily overwhelmed by a vision of my family tree, the one our tradition enjoins us to nurture so that it will continue to flourish m'dor l'dor, from generation to generation. The branches on my tree were truncated and shriveled, cruelly amputated even before they had had a chance to bloom. I would not dance at my daughter's wedding. Nor would I ever hold a grandbaby in my arms.
But rules prevailed. I could not hold the Bat Mitzvah in the synagogue if I opted to forgo the Torah service.
When I got home, I cried. I wept out of anger, frustration, and self-pity. It was recognition of that last sentiment that dried my tears for good and all. I'd indulged in more than my share of self-pity when my daughter was first diagnosed with autism. Thus, I knew well that beneath the superficial solace it offers its subscribers, self-pity only encourages emotional and psychological paralysis.
And I could not afford immobilization of any sort. I had a job to do. I knew that the Bat Mitzvah service I had in mind was well within the boundaries of tradition. It did not contradict Halacha, Jewish law, but merely challenged the rules of a particular synagogue. A Torah service, though customary, is not mandatory. If I could not bring my daughter to a sanctuary, then I would create a sanctuary for my daughter.