On a Wednesday night, about a dozen parents of children with developmental disabilities gather at Sinai Temple, a Conservative synagogue on the Westside. They meet to knock down barriers and dispel myths, to offer a shoulder to cry on and good advice on working the system of state and local agencies. Most of all, they provide support in a community where every child is expected to grow up to graduate from Harvard or, at least, UCLA.
The stigma against Jewish children with developmental disabilities and their families is strong — so strong that more than one parent interviewed for this story requested anonymity. Parents find themselves “explaining away” their child’s differences, even to other family members.
“I feel it’s important to come out of the closet — but we just can’t,” explained one mother of a 6-year-old son who has multiple disabilities, including Tourette’s Syndrome. “Ninety percent of my friends have no idea he has these problems because it is so stigmatizing. We’re in an upscale community and people hold their children up like trophies. I have only one child and I had high expectations for his future. Now all I want is for my child to be happy and live independently.”
The only relief for her secret, the woman said, was sharing it with other parents in the Sinai Temple/University Synagogue group.
“My son was only diagnosed nine months ago. Here I walk into a group of parents whose children have been diagnosed for two or three years and they are the experts,” she said. “They know their way around the system.”
Marilyn Stern, founder of the group and a member of Sinai Temple, approached Rabbi Sherre Zwelling a year ago and asked to have a short series of classes for the parents of children with special needs.
“At the first meeting, two parents showed up — myself with my son who has a diagnosis of autism, and another woman whose son had a diagnosis of cerebral palsy,” Stern said. “The next morning, I got a call from the temple saying they were going to cancel the meetings. Well, I don’t accept ‘no’ very easily. So we agreed if I could guarantee five people coming, the temple would keep the program going. We ended up with eight at the next meeting and were able to convince the temple administrators that there really is a need for us to be there.”
The support group, officially known as Caring for Our Special Needs Children, is part of Sinai Temple’s Ami-A Caring Community program. The group, which began at Sinai, is now supported in part by University Synagogue in Brentwood.
Another popular support group is the UCLA Family Support Community Program, which has been running in the city for 10 years and in the Valley since 1992. Although not exclusively Jewish, the group has a high percentage of Jewish families, founder and facilitator Linda Andron said.
“There’s been a big increase in participation in general [over the past ten years] and a large percentage of Jewish families from the beginning,” Andron said. “Maybe it is because Jewish families tend to seek help when they need it, but I also think it’s because we have a restricted gene pool. There seems to be a genetic component [to some disabilities].”
Participants at a recent Thursday night meeting ran the gamut from long-time members dealing with teen-agers, to several couples new to the group. As with parents of typical children this time of year, the focus was on the beginning of school and helping their kids make the best transition. Following the meeting, a few Jewish parents stayed on to discuss their experiences.
Susan Hain lives in Glendale and attends Temple Sinai, a 300-family congregation, which she says, has been wonderful in including her autistic son. “My son was in Sunday School and they supplied him with an aide, a teen-ager from the congregation. It worked beautifully for both of them.”
However, other families had more disappointing stories to tell. One mother of three, all with disabilities ranging from attention deficit disorder to autism, said she had her two older children enrolled at a prestigious Orthodox day school but was asked to withdraw them after they received formal diagnoses.
“The schools do not seem to be equipped to handle these problems,” she said. “Once a child has a label, what was acceptable before the label, suddenly becomes unacceptable.”
Which explains why one couple, whose 5-year-old son was recently diagnosed with Asperger’s Syndrome (a developmental disability that primarily affects social skills) have decided to withhold their child’s diagnosis from his teachers at a Jewish day school in Valley Village.
“We’ve gone through a year and a half without telling them, and he doesn’t have a problem with the school, so why risk it?” his father said.
This type of fear is exactly why support groups are so crucial, Stern said.
“We want to let parents in the Jewish community know they’re not alone, that their child is not the only child with a disability,” she said. “It can happen to anyone, and you do feel shame, and you do feel guilt, but this is a place where you can share that.”
For more information on Caring for Our Special Needs Children, call Tracy Schatz, family education coordinator for Sinai Temple, at (310) 474-1518 ext. 3212. A schedule of meetings throughout the Southland for the UCLA Family Support Community Program can be obtained by calling Linda Andron at (310) 206-6150.
Additional resources for families of children with developmental disabilities include:
* The “Shaare Tikvah” (Gates of Hope) preschool program at Valley Beth Shalom in Encino, run by special education coordinator Susan North-Gilboa. VBS also offers parental support, including a group for parents of children with ADD/ADHD. (818) 788-3000.
* “Shalom Chaverim,” a socialization program for children 3-5, will begin its third year on Sunday, Oct. 17, and continues Sundays between 10 and 11:30 a.m. at Kol Tikvah in Woodland Hills. A parenting group is run simultaneously by a child development expert. (818) 992-1960.
* The Etta Israel Center offers several support groups, including one in Farsi for Persian parents of special needs children. The center is associated with Orthodox Counseling Program of the Jewish Family Service of Los Angeles. (310) 285-0909.
* The Julie Ann Singer Therapeutic School in Los Angeles encourages parental support and participation and makes various resources available to the community. (310) 202-0669.