Camp a breath of fresh air for special-needs families

For Randi Goldman, the moment came last year in the middle of Friday night services: Her then-6-year-old autistic son, Ryan, was starting to jump up and down, blurting out as he had done at Shabbat services elsewhere. Randi and her husband, Todd, simultaneously turned to quiet him down. That's when the leader at the front of the room reminded everyone that this was a "no-shush zone."

"And we sat back," Goldman says, "and let Ryan be Ryan."

Letting Ryan and other special-needs kids be themselves was exactly what this year's "Shabbat Weekend for Children with Disabilities and Their Families," held in March, was again all about.

For the second year in a row, more than two dozen Bay Area families headed to the S.F. Bureau of Jewish Education-sponsored retreat at Santa Rosa's Camp Newman to participate in what was, in many respects, a Jewish camp weekend like any other — with arts and crafts, hiking, sports, Shabbat services, singing, folk dancing, a talent show and even a Purim play.

But it's exactly this experience — one revered by so many Jewish kids –that has been unavailable to so many special-needs kids.

"Any kind of teen Jewish experience had been closed to her," says Laurie Bellet, the camp's art specialist, of daughter Ariel, an 18-year-old with a host of developmental and medical disorders who participated in this year's event.

"Unfortunately, a lot of these people have had the experience of having doors slammed in their faces," says event organizer Flora Kupferman, special-education consultant for the BJE. The weekend was a response to a clear need to connect these families with each other and the Jewish community at large, a goal that gained the support of the Jewish Community Endowment Kohn Fund, which subsidized all of the families attending.

Lorna, whose younger daughter, 9-year-old Naomi, uses a wheelchair and is unable to eat, talk or walk, agrees with this assessment.

"I think it is so important to have a connection with other people who know what it's like to walk in our shoes," she says.

Her husband, Bruce Robinson, also welcomed the bonding fostered by the camp experience. "You can relax in an atmosphere where you know that whatever they do, everyone's just going to take it in stride," Robinson says.

Taking it in stride is not something these families are used to, even in well-meaning synagogues.

"It's hard when you go to temple and you're sort of the poster family with a child with special needs," says Susan Kalb, whose son Paul, an 18-year-old with undiagnosed developmental problems, attended the camp along with his 10-year-old sister, Teddi, and their father. Yet, that spiritual connection is what many of these Jewish families crave.

"We dropped out of any regular synagogue attendance because we just couldn't handle it with all that we were doing and our exhaustion level," says Catford, who helped organize some of her Sonoma State psychology students as interns for the weekend. She calls the spiritual connection that the weekend encouraged "significant and nourishing."

One highlight of that spiritual connection came Saturday during the Purim play put together by the counselors and kids.

"So many of the kids had limited abilities if you were to compare them with 'regular' kids, but here everybody was cheered for doing what they could do," says Catford.

That sense of acceptance was deepened by several opportunities the camp provided — both facilitated and freeform — for participants to connect with other parents or siblings of kids with disabilities.

"When you get right down to it, I think the thing that we are most hungry for is the opportunity to go, 'What is your life like? How do you cope with this? What's been your experience with that?' Robinson says. "Sometimes it's about medications and the mechanics of life; sometimes, it's just about unburdening your heart."

This unburdening can be even more pressing for the siblings of special needs kids. "Other people don't really necessarily understand what's it's like, but they did at this camp so we could talk about it," says 12-year-old Amber Catford-Robinson, Naomi's sister.

Goldman says one thing Ryan's 9-year-old brother, Mitchell — who attended the camp along with 5-year-old sister, Danielle — got out of the weekend was the sense of not being the only one whose sibling was "different." Last year, Goldman recalls, "he said to me after one of the meals, 'You know, Mom, maybe it's not so bad. Did you see that boy that looked around my age helping his sister in the wheelchair drinking and eating and wiping her face?'"

Still, the camp was about much more than acknowledging the seriousness of their lives.

Bellet created an art room that she says allowed 100 percent of the special-needs kids to participate, regardless of their limitations. This art room — with supplies Bellet had adapted for people of all abilities — generated more than 360 art projects by weekend's closing, including seder plates for each family.

"They have a great variety of things to do and they're developing them from year to year," acknowledges Kalb. "What's really great is that they're really listening to us and finding our needs."

In the case of her son, Paul, this meant letting him take a role as a "pseudo" counselor when he suddenly decided that's what he wanted to do. Kupferman says this responsiveness was key to the camp's success.

"When Paul said, 'I want to be a counselor,' I said, 'OK, tell me what you want to do.' I wanted him to feel invested in it and feel like this was his program, his camp, and he did."

In the end, she says, the camp is about inclusion, something often denied these families, even in the Jewish community. "This is a camp for these kids and their families. It's not a camp where they have to fit into our structure, but we need to accommodate their needs in all ways."