Jewish parents of special-needs kids rap, find support

Unlike most Jewish mothers, Jeanne Korn expects 9-year-old daughter Sara to fail at school, and that's what usually happens.

Susan Rancer's 11-year-old son David can't make his own bed, can't write because he has tremors and doesn't have much stamina.

Korn and Rancer are mothers of children with special needs.

"You have to be extraordinary to be the parent of a special-needs child and that's not easy on a daily basis. The rewards are few and far between," Korn explains. "I can get very depressed and isolated, feeling like I'm the only one facing these issues."

Psychologist Lynda Kravitz says these feelings are typical among parents of children with special needs. Recognizing that these parents need an outlet to express these feelings and that there are very few support groups around, the East Bay federation's Center for Jewish Living and Learning started one. With Kravitz as facilitator, it meets monthly at Jewish Community Services in Oakland and is made possible by a grant from the Jewish Community Foundation of the Jewish Federation of the Greater East Bay.

The group, which varies from six to 12 participants, is open to all parents of Jewish children with special needs.

"It's been a lifesaver," says Korn, who joined the group when it started in the fall of 1999. The group was originally led by Annie Volk, who died in April. Kravitz took over in September.

"I come to these groups and say, 'I'm not up to the job of parenting,'" Korn adds. "Sometimes [I have] even worse thoughts. Then I'll come away from the group thinking if these other moms can do it, I can do it, too."

Kravitz says that since everyone in the group is dealing with similar problems, participants can be open and honest.

"People can talk about things that seem very inappropriate in other settings. They can express feelings that to other people may feel extreme but to special-needs parents it's just part of life," says Kravitz. And like any Jewish group it has its own brand of humor. "We can laugh at things that feel very alien to other people."

And given the painful reality of dealing with a special-needs child on a day-to-day basis, a sense of humor is essential.

"Other parents take for granted that their kids can go to religious school and learn about holidays," says Korn. But for her daughter, who has a mild developmental disability as well as a learning disability, there is no taking anything for granted. "Everything my daughter does needs to be preceded by visits [to school] from me and discussions of how we can accommodate her special ways of learning, and sometimes talking to other parents about sensitivity on the part of their kids. She needs facilitation with every aspect of life."

Being part of a Jewish community where education and academic success are valued so highly, compounds these problems.

"Jewish parents tend to be in denial that their kids can't succeed in school and are not going to Stanford," said Korn. Keeping these issues in the closet magnifies the problems and adds to parents' feelings of isolation. Then there's the whole bar and bat mitzvah thing.

"There are special challenges around bar and bat mitzvahs," said Kravitz. There's the pure educational challenge of learning another language that is read from right to left, has a different alphabet and unfamiliar sounds. The anxiety over this can lead to behavioral problems in the classroom. "Some children might have speech and language problems so that getting up in front of a congregation and having a light on them might seem like an impossible task."

Bar and bat mitzvahs also bring up big social issues for special-needs children that range from the fear of being exposed before their peers to feeling that they don't have any friends to invite. But, Kravitz adds, that by working with a religious school staff a bar or bat mitzvah can be fashioned that is meaningful and can enhance the child's self-esteem.

Although her son is still two years away from his bar mitzvah, Rancer is thinking of doing something in Israel with him just to avoid many of these issues. David has familial dysautonomia, a genetic disorder that only affects Ashkenazi Jews. It is associated with learning disabilities and lack of motivation, and most significantly, it makes him medically fragile. Something minor such as a low-grade fever or stress can cause David's blood pressure to shoot up. He then expels salt in his urine, which causes his systems to start shutting down. According to his mother, without medical intervention, the next stage is seizures and then cardiac arrest. The disease has a very high mortality rate.

"There used to be two children in the Bay Area with this; now there's one," says Rancer, adding that health-wise, David is better off than 95 percent of the children with this genetic disorder. In the past six months David has been hospitalized five times, always in the intensive care unit.

"The intensity of dealing with [special-needs] children is so hard. It's always in your face. You're always dealing with school. Everything is an issue."

And that's only part of it, Kravitz says. There are the siblings who may feel resentful, embarrassed or overwhelmed by too much responsibility. It puts a lot of stress on marriages, both emotional and financial. Another very painful side effect for the whole family is abandonment.

"We're all hurting. When you have a special-needs child your friends are gone. They don't understand it. They don't know what to do. I think they just feel ill at ease. They can't relate to us anymore," says Rancer.

Their children also experience isolation. David has "hardly any friends," Rancer says. "Kids don't want to bother with him. He's never invited to a birthday party. None of these kids are. They're always alone."

But both Rancer and Korn say that being able to talk about these concerns and hear other parents' experiences helps tremendously.

"It puts things in perspective," says Korn, who says she always feels better after the group. "Maybe nothing has changed on the outside but it has on the inside. I feel that I'm not alone."

For information about the Special Needs Parent Support Group call Desmid Lyon at (510) 839-2900, ext. 233.