What happens to a Jewish child who can't sit still for religious classes because of severe attention-deficit disorder? Or one who doesn't understand the meaning of the holidays because she has Down syndrome? What happens when your autistic son is nearing the age of 12 and hasn't received the kind of Jewish education that will allow him to celebrate his bar mitzvah along with his peers?
While a handful of new initiatives are carving out a place for special-needs children in L.A. Jewish educational settings, families of these children have long felt excluded when it comes to participating in such basic functions as Shabbat services and Hebrew school.
Although there are no formal studies conducted as yet, it is clear that the number of Jewish families with special-needs children is growing, just as the number of cases grow nationwide (for example, the Centers for Disease Control and Prevention estimates that one in every 167 children will be diagnosed with an autism spectrum disorder, up from one in 500 in 1998). That means the problem of special education for Jewish children is becoming more complex every year.
The Bureau of Jewish Education of Greater Los Angeles (BJE) has had a special-education unit since the 1970s, yet no formal network of support for special education exists in Los Angeles-area Jewish religious schools. Most non-Orthodox day schools in Los Angeles that have been approached about beginning a special-education track have declined, says one educator who has petitioned them for such a venue.
Even the associate director of the BJE expressed his dissatisfaction with the pace of progress in this area, saying it is time for the bureau to be more systematic in helping the special-needs community.
"We are the first ones to admit that special-needs programs coming through the bureau are very limited," Phil Liff-Grieff said. "There is always a tug of war between needs and resources."
The BJE recently created a new task force to examine what role it should have in fostering special education among religious schools. Liff-Grieff said the task force will perform a "careful survey of the client population," look at existing programs outside the L.A. area, and then decide from there how it should proceed.
"Special education is very costly work; to do it right and to do it well requires a lot of resources," he said.
Liff-Grieff added that in the Orthodox community, education programs are generally perceived as more inclusive of special-needs children, noting that "day school education in the Orthodox community is not a luxury, it's a necessity," he said.
A few Los Angeles-area synagogues are working to support inclusion, or to provide alternative programming. One of the newest programs is Koleinu at Pressman Academy, overseen by Temple Beth Am of Los Angeles and made possible by a BJE grant. The Koleinu program began in October with a minyan for special-needs children and meets several times a month (see sidebar).
Koleinu uses a "buddy program" whereby each disabled child is partnered with a more typical child who sings with them, helps them keep track of the service and makes the service more fun, according to Susan Leider, religious school principal and director of Shabbat programming for Beth Am. "The idea is typical kids entering into their environment, versus the special-needs kids having to come into a typical environment," Leider said.
Pressman is also ready to launch a religious school program for second grade through fourth grade if they can enroll enough pupils. The religious school program will mirror the curriculum of the regular school program for that age group, with units on the synagogue, Jewish holidays and the book of Genesis.
Elana Naftalin-Kelman is one of the Pressman Academy religious school instructors leading the Koleinu program.
"I love to see these children start to enjoy being Jewish, to have a positive prayer experience and a positive Shabbat experience," she said. "I don't think they are beyond understanding the concept of God with the right conversation and the right questions."
She said her ultimate goal is to persuade non-Orthodox day schools -- which she says have largely ignored children with special needs -- to begin a special education track.
"I've spoken to almost all the non-Orthodox principals in the Los Angeles area, and most of them think creating programs for children with special needs in their schools would [negatively] affect the school's reputation," she said. "Most schools have resources to provide extra help for typical kids who need it, but nothing more; others say they do not have the space."
Some parents, tired of waiting for the general community to respond, have started their own programs and support networks. Rabbi Shawn Fields-Meyer teaches at the University of Judaism and is the mother of three children. Her middle son was diagnosed with autism in 2000, when he was 4.
"Shortly after we received Ezra's diagnosis, I was talking to a friend who also had a child with issues," she recalled. "We were discussing the multitude of therapies and interventions we had for our children, and we realized something was missing. My friend suggested that that something was Torah and said to me, 'What are you going to do about that, rabbi?' So I pulled together a circle of friends, all of whom had children with special needs."
Ozreinu, a cross-denominational and multidiagnosis support group that meets in people's homes, has since evolved into three support groups -- one in the city and two in the San Fernando Valley. The groups meet once a month to study Torah and discuss what they learn from the text and how it can help them meet the spiritual challenges of raising a child with disabilities.
Fields-Meyer said that, like Naftalin-Kelman, she would like to see more schools embrace children with special needs. Her two other children attend Pressman, but Ezra goes to public school.
Community leaders agree that changing the scope of Jewish education to include children with special needs means putting various support structures in place, such as training programs to help teachers and principals learn to work with special-needs children and a fund to provide financial support.
"We are, as a Jewish education system, far from where we would like to be," Liff-Grieff said. "But the leadership of this agency is ready to roll up their sleeves and say to the community, 'Let's tackle this problem.'"
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