A Different Kind Of Bar Mitzvah: Walking For Autism
Hidden away, they have been waiting for this day. To be used for the purpose for which they had been created. Beautifully, lovingly.
Two yads, the ritual object used to point to the text during Torah reading, given to Ben on his Consecration -- the ceremony marking the start of his formal Jewish education. Each one from a great-aunt who wanted to link that sacred moment to a future sacred moment. The day that our firstborn would be called to the Torah for the first time as a Bar Mitzvah.
Ben was five years old at his Consecration. We already suspected that something was different about him, but never thought that his life would take a trajectory so very removed from the one we’d dreamed for him. And it certainly never occurred to us then that he wouldn’t have a conventional Bar Mitzvah ceremony.
On June 26, 2000, when Ben was not even a full day old, I looked at the calendar and imprinted June 29, 2013 on my brain. Shabbat Pinchas, we believed, was to be the day that Ben would be called to Torah for the very first time.
But it became increasingly clear in the last few years that while Ben is certainly capable of learning prayers and his Torah portion, his deep-seated anxieties, sensory issues that make wearing certain fabrics (such as the kind used in nice suits) impossible and emotional immaturity would be insurmountable stumbling blocks to a traditional rite of passage.
But knowing this and respecting this are two different things, as the heart and mind do not always come to decisions simultaneously. So it took much reflection, for us to realize that we needed to celebrate who Ben is, rather than who we wish he is capable of being. Then we crafted a Bar Mitzvah experience that will better reflect his strengths and interests.
This weekend, Shabbat Kedoshim, family and friends from across the country will gather for a festive Shabbos meal on Friday evening. The following morning, we will participate in our local Walk Now for Autism Speaks, walking as Ben's Bar Mitzvah Brigade. Thanks to the generosity of friends, family, and strangers across the globe, our team has surpassed Ben’s goal of raising $5,400 for the research he prays will find a cure. And we will end Shabbat with Havdallah, the ceremony of separation between sacred time and ordinary time.
I am a strong believer in beshert and that there is meaning in most everything. It is, therefore, neither an accident nor a coincidence that the Torah portion of Ben's Bar Mitzvah is now Kedoshim. This week’s portion, with its mandate of and promise for holiness, is not merely central to our religion but is literally smack-dab in the middle of the actual Torah scroll. We did not pick this portion; it picked us. It chose us by being on the very Shabbat of our local Walk for Autism, and it serves as a reminder to seek the holiness in each experience and in each person. Our happiness, our simcha, will honor all that is sacred about Ben as he moves towards leading an independent Jewish life.
But when I open my drawer and longingly finger these two yadaiim, I do so with a heavy heart. Confronted with questions I don’t want to ask: When will he live an independent Jewish life? Or an independent life of any kind?
Parents of kids on the spectrum are not supposed to ask these questions. At least not publically. Advocating for my child requires positive language. “When” rather than “if.” “Not yet” rather than “never.” But what if “not yet” never comes?
And so those yads will remain in my drawer. One an intricate design of filigree. The other ceramic, in blue hues. Only now they will stay in the drawer, tucked into the folds of his tallis, the stunning ritual prayer shawl woven by our family’s weavers in Jerusalem with the fringes, as is our tradition, finished by my mother, Ben’s bubbe. Like me, they will wait.
To support Ben's Bar Mitzvah Brigade, click here.
Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow whose work appears regularly on the Rabbis Without Borders blog and Kveller.com as well as a variety of other online sites. Writing at This Messy Life (www.rebeccaeinsteinschorr.com), Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Follow her on Twitter @rebeccaschorr.
Originally posted at The Jewish Week's blog The New Normal, which focuses on disabilities and the Jewish community