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by Nancy Crown
When I was called to meet with a member of my synagogue’s Congregation-Based Community Organizing Committee, I almost declined. I was asked to think about what the temple could do that it was not already doing. My main reaction was to reflect on the many opportunities for learning, worship, and community that I wasn’t partaking of, due to limited time and a longstanding “outsider” feeling when it comes to religion. Like many others, my upbringing did not include much meaningful participation in the spiritual aspects of Judaism.
My daughter, now 28 years old, has developmental disabilities. She was keenly interested in Judaism as a young child, but as a teen, she began to talk about converting to another religion. By that time, our son was enrolled in school at Congregation Rodeph Sholom, where we were members. We chose a Jewish day school for a number of reasons, including our desire for our son to feel more secure in his Jewish identity than my husband, my daughter, or I had felt. We began lighting candles on Friday nights. I took Hebrew classes. We attended services, where, at moments, I would feel an achy kind of longing, alongside a feeling of being an outsider. Try as I might, I couldn’t quite find a way in.
One summer, I called the synagogue, looking for ways to engage my daughter. I was desperate to create a supportive structure for my daughter while she was on break from school. We live around the corner from the synagogue, so proximity was a huge plus for someone who wasn’t yet able to travel unaccompanied. It can be extraordinarily daunting to develop a safe and meaningful agenda for an energetic but highly dependent teenager.
At that time, there was absolutely nothing in our neighborhood for a teen with disabilities – not a class at the JCC, not an hour a week of supervised volunteer work at our temple. How could I feel part of a Jewish community where there was something for all of us except my daughter?
So when I was called to meet with the Congregation-Based Community Organizing Committee, I was ambivalent. Little did I know that this would turn out to be the way in. Gina Levine, a gifted lay leader who happens to be married to our senior rabbi, asked me what was missing for me from Congregation Rodeph Sholom. I shared my feeling that the offerings were rich and my own failure to avail myself, but she persisted: “There must be something.” My thoughts turned to my daughter. I told Gina about her (she wasn’t aware I had an older child) and how there wasn’t a place for her at the synagogue and therefore, ultimately, for our family. You only feel as accepted as your least accepted child.
The rest, as they say, is history. Now, Gina and I co-chair a committee made up of talented clergy and congregants, many of them parents of children with disabilities or professionals in disability-related fields. Our group is dedicated to making Congregation Rodeph Sholom as accessible as possible to all families.
Our first task was to develop a worship service specifically designed for families with special needs. A consultant advised us to first do a “needs assessment,” but with his customary vision and courage, Rabbi Robert Levine announced, “There is a need!” Not only is there a need, but we were surprised and dismayed to learn that synagogues all over the country were utterly failing to meet it.
In designing our service, Shireinu, we thought carefully about every element that might be relevant to providing a comfortable, meaningful experience for the families we hoped to embrace – from music to the length of the service to the sequence of events. The services are interactive, musical, divided into short segments, and interpreted into American Sign Language. We’ve built in plenty of repetition and preparation, both before (through a social story) and during the service. We’ve chosen all of the pieces to create consistency and predictability, and so as not to overwhelm sensitive sensory processing systems. Using the resources we’ve created, any synagogue can run these services.
It is well-established that in order to thrive, human beings need community and a sense of belonging. This need is pushed to a new level for families of people with disabilities. A sense of disconnectedness from others, the world, and to a force greater than the self is a theme in the lives of people with disabilities. Because one family member’s pain seeps into the lives of others, the entire family is affected. Synagogues can make a huge difference.
Says one mother who attends our services with her son:
Saturday was the very first time I’d taken my son to a synagogue since he was about 2 years old. It felt wonderful to have him be a part of it….Sitting in your shul on Friday gave me renewed hope that there is a place for my son in Judaism, and there is a way to get from here to there, even if I can’t see it yet. So I thank you, not only for the services but for the hope you gave me for my son’s Jewish identity.
Dr. Nancy Crown is a clinical psychologist in private practice New York City. She works with adults and children, has presented widely, and publishes on the topic of developmental disabilities. Along with Gina Levine, Dr. Crown co-founded and co-chairs Shireinu, the Special Needs Committee at Congregation Rodeph Sholom in New York City.
Visit shireinu.rodephsholom.org to learn more about Shireinu (Our Songs), Special Needs Worship Services, which provides families and children the opportunity to worship together in an accessible, interactive, and sensitive environment for four holidays: Rosh HaShanah, Chanukah, Passover, and Purim.