By Barb Gelb
Five years ago I married a man with an 18 year old daughter, Mallory, with Fragile X Syndrome, a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. In the 13 years that I have been involved with this (now my) family, I have learned a lot about the Jewish community as it relates to the Special Needs community. I want to share some steps we have taken over the past several years that have given me hope that we can provide a great deal more than we are already doing.
This summer Mal, age 23, experienced Birthright. When we think about birthright, it’s synonymous with the “free trip to Israel for young Jewish adults.” But I would like to suggest that in addition to the trip, Mal experienced her birthright – her right by birth to be a member and have a safe and loving place in the Jewish community. And I am hopeful that every person with special needs can seize their birthright as well.
Our story starts about a decade ago, when Mal had a bat mitzvah. The Cantor at Congregation Beth El in Norfolk understood her limitations and was amazing in creating a meaningful experience that challenged her but also helped her shine. After that, however, because of her special needs, Hebrew school was really not a good fit for her, and youth group events were challenging and anxiety producing. It was difficult to find a place for Mal in Jewish life. I was not part of Mal’s life on a daily basis at that time. I was dating her father, but I lived two plane rides away. (Pretty much everything is two plane rides away from Virginia Beach.) My husband Kenny, whose family had been members of the Congregation for 150 years, was heart-broken that she did not have a Jewish community, and since I happened to be an Educator who worked with several children with special needs at a Reform synagogue in Memphis, I suggested he try out Ohev Sholom, thinking there might be more flexibility in the Reform curricula. When Kenny talked to Rabbi Roz, Educator Gail Bachman, and their staff, the answer was simple, “We’ll make it work.” Mal started as a volunteer helper at the OST religious school, and she was blessed with loving supervisors who gave her schedules, kept her on track and made her feel valuable. Most of all, she gained a Jewish home where she felt respected and welcome. (The Sunday morning bagels helped a lot too!) After a couple of years they started to pay her a small stipend for her work, and recognizing her photography skills, utilized her in that capacity too, increasing her feelings of self-worth. This was not simple for them, there have been tears and drama, but they hung in there. Mal remains the Sunday morning photographer there, and she still grows from the guidance and coaching she receives on Sunday mornings.
Around the same time, now that she was in high school, Mal was outgrowing some of her summer options and beginning to experience profound loneliness. Many typical kids her age were going to sleepaway camp or working in summer jobs. I suggested Camp Ramah Palmer, which is famous for their special needs “Tikvah” program. (Full disclosure, my brother is the Director, Rabbi Ed Gelb.) There Mal could experience a new Jewish community, make new friends, grow from being away from home, etc. The summer was a success. Mal enjoyed some independence and had fun, but it was not a perfect match for her personality and interests. The next two summers she spent at URJ Camp Kutz, which she enjoyed because typically developing teens her age were her mentors. They really filled a void in her life since making friends was really hard. After two summers, Mal wanted to try something else, and by then she was about 17 years old. What she wanted was to be included in the camp, not in a separate program. My own children have grown up at Camp JCA Shalom in Malibu, CA. At that time, one of them was a Counselor-In-Training and another was in the teen program. We contacted Joel Charnick, the Camp Director and explained that Mal would like to be a camper, but she would need a lot of shadowing and coaching. Joel’s answer was “We’ll make it work.” And they did. She was a camper for two years, and then became the staff photographer. I cannot say it has been simple. She has job coaches who work with her to keep her on track and help her navigate her emotions as she grows more responsible and more capable in handling relationships. Mal is amazing. She is fun, kind and friendly. But she has Fragile X syndrome and it’s complicated. She misreads signals and causes drama. She gets upset and angry. But her coaches are patient while holding her responsible. At Camp, Mal has found yet another Jewish home away from home, where she is beloved, safe and part of the community.
Between Ohef and Camp, Mal has found a safe and secure place in the community, and when we thank them, Rabbi Roz and Joel have both said to us over the years, “She makes us better.” As we say in Hebrew “Dayenu,” this would have been enough. But there is more!
After high school, parents of typically developing kids talk about “launching” their teens into adulthood. For special needs families, we refer to that launching pad as a “cliff.” Because of special education laws, schools have responsibilities, including transportation, therapy, and job training. Life in the wider community, on the other hand, is different. People with special needs have rights, but they don’t always have services. Even when they have services, there are waiting lists, overworked employees and red tape. Where could Mal go on a daily basis to be fulfilled, busy and safe? Mal was adamant that she did not want to go into food service, a common route for people with her skills. Given her physical strength and friendliness, we thought of the Beth Sholom Village, our Jewish home for the elderly. Surely they could use some help with setting up and bringing the residences to activities. When we contacted David Abraham, CEO of Beth Sholom, he answered similarly to Rabbi Roz and Joel, “We’ll make it work.” And he did. Mal volunteers weekly there, and at two other senior centers as well, keeping her busy 4 days each week, 4 hours each day. Are there bumps in the road? Of course, but everyone is committed to making it work, for Mal, and Beth Sholom Village is another piece of Mal’s Jewish world.
When I came to work at the Sandler Family Campus which houses our Federation, JCC and JFS, we had one more idea that would expand Mal’s world a little more. Why not have her come to the JCC after her volunteer work? She could work out, interact with people, and have another community of friends. She began doing that four days a week for the last 18 months and it has been such blessing. Mal comes in and she gives everyone a big smile and talks to whoever she can. She enjoys her workout, but mostly has a blast bantering with Ray the trainer, Darrel at the front desk, or Patty in the Federation office. She has learned that she cannot disturb people who are working, so she has a short conversation and moves on. If there is food leftover from a meeting, she helps herself to it because she believes she’s part of our team. The campus has become her place, it’s her community, and she feels a sense of belonging.
Her daily visits to the JCC are what finally led to her Birthright trip to Israel this summer. My colleague Carly, the Outreach Manager for the Federation, was one of the people Mal said a daily hello to. One day she told me that they have Birthright trips for people with special needs, and not only that, she put us in touch with people she personally knew who made us feel comfortable helping Mal apply for the trip. She then did everything she could to help Mal feel excited and comfortable about going. The night before the trip we invited people from all over the community who have embraced her to come together for a Bon Voyage cake. In that moment I felt that Mal was not just included in the community, she was embraced. She was loved and appreciated, and every person who has helped her on her journey contributed to getting her to this moment where she would bravely travel to a new country, knowing no one. The trip was a success in every way.
I believe this story, while very unique to Mal, is also one of hope for every Jewish family navigating this path. Nothing about this was or is easy – for every successful step there is at least one misstep. Every person with special needs is different and there is no “one size fits all” solution to helping them lead a life of joy and meaning. In the organized Jewish community, we must accept that. It is a challenge for the Jewish community to provide services that will work for each individual but using Mal as an example, I think we can find ways to embrace each one individually.
Barb Gelb is Director of Development at United Jewish Federation of Tidewater, Simon Family JCC.