After the Diagnosis…

The moment I learned I was pregnant, I bought a book, The Jewish Parenting Book — my first official purchase. At that time, I was a full-time cantor, living and working in Omaha, Nebraska: Everything in my life had a Jewish frame. I told myself that if I was going on a journey, I needed guidebooks. Months of pregnancy passed, and parenting books spilled from the nightstand — procreating, too, it seemed, while my husband and I slept.

Zeev — meaning radiance — was born on a blue moon late in the summer of 1993. Soon, my husband and I would learn that there weren’t books yet written to prepare us for this journey. Zeev’s course seemed unchartable, and books — the tools I’d always used to find my way — were inoperable here. Slowly, sometimes painfully, my husband and I stumbled forward, finding our own ways, not always in sync, negotiating, sidestepping boulders on the path. I put my half-read books on a distant shelf, and for the first time in my life set forth without them.

Zeev’s first few years were a blur of melodic dissonance: Nothing adhered to anticipated scripts. Zeev refused to play with toys, but studied loose yarns in the rug intensively. The ceiling fan held him rapt. If another mother on the playground laughed or sneezed, he’d scream so relentlessly that we’d have to go sit in the car. Strapped into his car seat, Mozart would abruptly soothe him. Fussy about everything, he cried all the time, until one day all crying suddenly stopped. He refused all solid food. Patently uncomfortable in his own skin, to us he was entirely a mystery.

In those days — they seem so long ago now — almost no one said “Autism,” and Zeev wasn’t formally tested until he was four. At age one, though, my husband and I were told that our son had a “condition” — Pervasive Developmental Disorder, Not Otherwise Specified. It meant little to us (as parents, Zeev, at some point, had simply become Zeev), but the label helped us, for the first time, find fellow travelers. It was at this point that our journey to meet Zeev halfway really began.

We moved to Seattle and I once again became pregnant, doctors having assured us that “it” wouldn’t happen again. Lightning doesn’t strike twice, right? Wrong. Ivy Noam was born in 1999, and she is also on the autism spectrum.

Today, bookstore shelves groan with guidebooks about autism; the disorder is now an epidemic. In relation to Jewish life, though, “autism families” often still feel the way I did during Zeev’s early years. Along with my heartbreak and numbness in relation to Zeev, came a separate sense of feeling “outside” the Jewish community, of feeling crushingly alone.

It felt so painful to have friends give birth to typical children, and then effortlessly find a home in the context of synagogue holidays and rites of passage. While they joyfully accompanied their children to “Tot Shabbat” programs, enrolled them in Jewish pre-schools, and delighted in thinking about their kids’ Jewish futures — a bar/bat mitzvah; a trip to Israel, perhaps; a Jewish summer camp; the year the child would be old enough to recite the Four Questions and later, maybe, to lead the whole Seder; that day when they’d stand beneath a chuppah — my husband and I felt so vulnerable and forgotten.

For me, it felt that just as i’d lost the guideposts to my child’s future, Judaism withdrew its guideposts, too. Would there be a place for us in Judaism if Zeev, and then later Ivy, couldn’t participate in any of Judaism’s developmental passages? Deeply Jewishly-identified, I would have done anything for an outstretched hand.

Though my family is too far along in its journey to participate in the kind of ceremony that I limn [see below], it is not too late for families who are now finding out — or who will find out in the future — that they have children with disabilities.

First, though, I want to encourage rabbis and cantors to reach out to these parents when they hear that something’s developmentally amiss — whether that be in relation to the child adopted from abroad, or to the biologically-related one born right here. Pick up the phone. Say, “I hear your child’s been diagnosed. Can I visit?” The parents will feel so embraced… so embraced by Judaism. Let them feel that Judaism is there for them; not just at a bar/bat mitzvah, but at the beginning — whatever that beginning is. At the visit, just sit with them. Have a cup of tea. Sing “Eli, Eli” or a wordless niggun Share a prayer, perhaps, or a Hebrew poem. Don’t worry about what to say; being speechless is also appropriate.

Let the family know that you’re there to accompany them — that every parent’s path through dealing with such news is different, and no one can predict how they, in particular, will find their way through so many emotions. Acknowledge that their path will be different, but affirm that there will be light. Hold in your mind a vision of family healing. Tell them that when they’re ready, Judaism has something to give them: a ceremony. Promise them this.

Maybe they won’t want it, but maybe they will. Maybe they will want it some day in the future when they feel ready to acknowledge their acceptance of their child’s diagnosis. Maybe they will want it at their home with just a few people present, or with other parents of children with disabilities farther along in their journeys. Maybe they will want to have a ceremony in the synagogue. Tell them that some day — if they want it — Judaism is there to sacralize their path.

If my husband and I had had such an experience, it could have changed our world.

Karen Webber Gilat