On these days of Hanukkah, as Jews light the menorah’s candles, they recite a blessing for miracles of the past, for enemies vanquished and for lamp oil sustained. What might constitute a Hanukkah miracle today depends, perhaps, on what one needs and what one asks. It could even happen on the Upper West Side of Manhattan.
Early in the summer six or seven years ago, Nancy J. Crown set about looking for a part-time job for her teenage daughter, Sadie. By now, as both a mother and a psychologist, Ms. Crown was all too familiar with the struggle of finding any person, any program, any place suitable for a child with autism.
Doctor, dentist, swimming lessons, vocational therapy, tutoring, ballet, even a pair of shoes without buckles or laces — every part of Sadie’s life, it sometimes seemed, plunged Ms. Crown into a lonely quest. At the lowest moments, she told herself, “I am not allowed to die,” because then who would take care of Sadie?
This particular summer, searching for a job doing clerical work that would help Sadie grow more independent, Ms. Crown decided to call Congregation Rodeph Sholom, the Reform Jewish temple where her family belonged. Her younger child, Joseph, was a student at its day school; for some years, the family had even lived in the same building as Rodeph Sholom’s rabbi, Robert N. Levine, forming one of those waiting-for-the-elevator friendships.
So Ms. Crown took it hard when Rodeph Sholom said it had no summer job for Sadie. “I didn’t feel like it was a community for my whole family,” she said in an interview this week. “I didn’t feel there was room for Sadie with her special challenges. There’s an expression that you’re only as happy as your least-happy child. Well, you’re only as accepted as your least-accepted child.”
That wound stayed inside Ms. Crown until the last day of June 2009. Rodeph Sholom was embarking on a community-organizing campaign, and congregational leaders were meeting individually with members to ask, essentially, what could the temple do better.
The rabbi’s wife, Gina Levine, happened to be assigned to talk with Ms. Crown, and Ms. Crown told her about the summer job, and more than the job, the way the whole episode made her feel that the temple, and maybe religious life altogether, had no room for Sadie.
Those words fell on especially attuned ears. By coincidence, Ms. Levine had heard similar concerns a few months earlier from a friend, a New York University professor with an autistic son. And her husband, Rabbi Levine, had been born with cerebral palsy, his mother warned by doctors that the boy might never walk.
Ultimately, he escaped that sentence, growing up with a limp, a left arm that didn’t straighten and a sensitivity to the set-apart “that’s core to my life.”
At Rodeph Sholom, Rabbi Levine had even created a special-education track within its Hebrew school.
But that program was not designed for children with more severe forms of autism, children like Sadie who would never read near grade level, who had trouble crossing a street alone, who could be overwhelmed by new sounds or unexpected events. And that program, even for its participants, was not a worship service, not the central ritual of Judaism.
“Some of these families are like hidden Jews,” Rabbi Levine put it recently. “And the point of being a community is not just to be there for people who present themselves at your door, but also people who are hidden.”
So Rodeph Sholom decided to put together a worship service for special-needs people and their families, whether members or not. For nearly an entire year, a team that included Ms. Levine, Ms. Crown and two staff rabbis, Benjamin Spratt and Leora Kaye, tried to figure out how.
They learned of a program called Music for Autism, which held concerts for affected children. Its founder, Robert Accordino, told them of the importance of preparing autistic participants for an unfamiliar event with an illustrated manual known as a “social story.”
As Rosh Hashanah approached this year, Ms. Crown and the others turned the holiday worship service into a social story. It had photographs and simple captions like “Rabbi Ben will lead the service, and Louie will play his guitar.” And: “We will sing a special prayer called the ‘Shema.’ Some people close their eyes for this prayer.”
Fliers about the service went out to temple members, and nobody really knew how many responses to expect. If just five families showed up, Ms. Levine told herself, it would be a success.
Ms. Crown wasn’t even sure how Sadie would respond. Now 25, she was living in a group home in New Jersey and holding a part-time job. She had been inside Rodeph Sholom only sporadically over the last decade, barely once a year. How could the subject even be broached?
“Tell Sadie we need her,” Ms. Levine advised. So Ms. Crown did. And so Sadie came home for the holiday, and she went to temple suitably modest in a midcalf dress and closed-toe shoes. Then, in her way, she looked at the feet of all the women in the lobby, seeing how many, like her mother, wore inappropriate sandals.
Nearly 90 people appeared for the service in the temple’s social hall. Sadie sat near the front, near the Torah. She talked with Rabbi Ben, right in the middle of the service, about the best kind of instrument for announcing the new year. And it was O.K., Nancy Crown realized, sitting rows away. It was O.K. — Sadie was asking a question in temple, and nobody was shushing her.
Now Hanukkah has arrived, with its evocation of ancient miracles. This Sabbath morning, Sadie and her mother plan to attend the second special-needs worship service at Rodeph Sholom.
There is a phrase often used to describe autistic people — “on the spectrum” — and it can almost sound like a physical place, somewhere isolated and remote, except maybe when you can feel God, too, on the spectrum.
Saturday, December 4, 2010
The NY Times:
Posted by BA Haller at 12:42 PM