“Simon says, stand up. Simon says, put your hands on your head.”
David Neufeld was leading a friendly game of Simon Says as an icebreaker during a recent conference hosted by Jewish LearningWorks, with the adults in attendance gamely playing along. Then he started to speak louder and faster.
“Turn around. Turn around. Turn around!” he yelled at the confused participants, who were waiting to hear “Simon says.” “Why aren’t you doing it?!”
Bewildering instructions, fast-paced activities, unclear expectations — this is the experience for many children with special needs and learning disabilities in schools, religious programs and everyday life, said Neufeld, director of special-needs programs and services at the nonprofit educational institution. A tone of voice that sounds normal to typical students may come across as urgent or frustrated to those with special needs, Neufeld explained after the activity meant to illustrate that experience.
Jewish LearningWorks brought together educators, parents and Jewish professionals for a daylong conference in early May at Wornick Jewish Day School in Foster City to share strategies on creating inclusive space for children with learning disabilities, sensory processing issues and other diagnoses, from anxiety to autism.
“There have been some in-roads into beginning to address this, but we have a long way to go,” said Rabbi Nat Ezray of Congregation Beth Jacob in Redwood City, who led a text study about special needs and inclusion during the conference and whose synagogue has taken concrete steps to become more inclusive to those with special needs.
Jewish institutions all grapple with how best to accommodate children who learn differently or who have behavioral, physical or emotional challenges. Over the last decade, there has been a growing awareness in the community about the importance of creating inclusive spaces for special-needs children and their families as a Jewish value.
But while Jewish institutions in theory would like to include all Jewish children, in reality they often lack the expertise and the resources to fully support every student with special needs or learning disabilities. It’s a balancing act.
Shari Grande received the diagnosis that her son Elijah, then about to turn 3, was autistic just four days before she gave birth to his younger brother, Nathan.
Grande, 47, had worried there might be something wrong with Elijah for a couple of years. When she called his name, he didn’t respond; as he got older, he didn’t interact with the other kids at his day care. But every time Grande took him to the pediatrician, the doctor assured her that Elijah was a normal boy. She convinced herself her concerns were driven by the nerves of a first-time mom, only to grow worried again and make another doctor visit. Her husband asked her why she was looking to find something wrong.
“I just knew something was off,” said Grande, who is a clinical social worker and parent coach. “Finally I said to the doctor, ‘I know you’re going to tell me it’s nothing. I don’t think it’s nothing.’ I found my assertive mommy voice.”
The pediatrician referred Grande to specialists, including an audiologist and a developmental pediatrician, who diagnosed Elijah with autism. Now almost 13, Elijah also has ADHD and anxiety — “a lot of A’s,” observed Grande wryly.
With a new baby and a new diagnosis, it was a difficult time for Grande’s family of four. Therapies and visits to specialists were a huge financial drain. And they felt unsupported attending services at their South Bay synagogue, where Elijah would behave in ways that some congregants found inappropriate.
“We were shushed by other congregants, kind of shamed and shushed,” said Grande, who added that Elijah was once ejected from child care during High Holy Day services. That kind of treatment, along with financial pressures, eventually drove the family to leave the synagogue. “We were kind of feeling like we were being kicked when we needed support,” she said, noting that both boys thrived in Jewish preschool at South Peninsula Hebrew Day School.
“Parents of kids with serious special needs are under tremendous pressure,” explained Vicky Kelman, a longtime Jewish educator who was the director of the Jewish Family Education Project at the Bureau of Jewish Education (now Jewish LearningWorks) for 15 years. “When someone says, ‘Can’t you control your kid?’ or looks at you like your kid is a total brat, they get very gun shy.” Neufeld has a name for the social rejection that parents of special-needs children experience: the “look of death.” “It makes people feel like, ‘I’m such a bad parent, and I’m not comfortable here,’ ” he said.
Neufeld facilitates Jewish LearningWorks’ INCLUDE program, which helps Peninsula-area synagogues, preschools, JCCs and day schools better serve children of different abilities (the program soon will expand to the East Bay and Marin). He said simple steps, like creating a quiet room where children can retreat during services or community events if they feel overwhelmed, can make a huge difference in making families feel supported and welcomed. He also recommends that institutions raise awareness about disabilities, so if a child is being noisy, for example, others in the community will not interpret it as misbehavior.
Jewish LearningWorks just completed its 14th annual weekend family camp at Camp Newman in Santa Rosa. Camp Ramah in Ojai has a longstanding overnight camping program for children and teens with special needs and also holds an annual family camp. The director of Ramah’s special-needs Tikvah program, Elana Naftalin-Kelman, who is based in Berkeley, several years ago started Rosh Pina, which offers a yearlong evaluation and certification program for Jewish organizations that want to become more inclusive to special-needs populations (www.rpcornerstone.org).
One of the first Jewish programs to reach out to this population was Friendship Circle, a national organization founded more than two decades ago by Chabad that offers Jewish programming and support for families with special-needs children and teens. It has two Bay Area chapters, in the East Bay and the Peninsula/South Bay.
“We started this branch in 2003,” said Rabbi Ezzy Schusterman, executive director of the Peninsula/South Bay Friendship Circle. “At the time there were no services for children with special needs in the community.”
Grande and her family participate in Friendship Circle, which operates out of Kehillah Jewish High School in Palo Alto. When he was in grade school, Elijah had a high school buddy who would come over to their house every week and do Jewish-themed activities with him.
“A lot of therapies treat your child in a vacuum,” said Grande, noting that Friendship Circle also supports the parents and families. “There’s nothing that you could do to scare them off — you or your child can throw a tantrum. It’s a very warm and welcoming environment.”
The program not only provides friendship for the child, but also offers much-needed respite for the caregiver/parent, who can relax for the hour or two the volunteer is around. There is also a summer camp and a two-hour Sunday drop-off program for kids, with an optional support group for parents.
Schusterman has helped Friendship Circle participants prepare for modified bar and bat mitzvahs that are calibrated toward their abilities; it could mean building in breaks during the Torah reading, or learning one song in place of reciting the entire Haftorah.
Ezray also arranges custom bar and bat mitzvahs for kids with special needs — for instance, his own son, Ethan, who can become socially overwhelmed, had his bar mitzvah during a Saturday afternoon service so it would be a smaller and quieter environment. Beth Jacob also has a quiet room and therapeutic toys for special-needs children to use during religious services.
When a special-needs student enters the Beth Jacob preschool or religious school, a meeting is held with parents and educators to discuss how best to accommodate the child. “People are different, and we need to tolerate those differences when it comes to behavior,” Ezray said. “I would love there to be an ethic of synagogues to just say yes.”
While the Bay Area has a number of resources for Jewish families, many children, especially those with more serious or complex diagnoses, are still not being served.
One barrier to inclusion is that overburdened parents often opt out of joining temples or sending their special-needs kids to religious school.
“The parents self-select themselves out of the synagogue, self-select themselves out of the school; they just don’t come,” Schusterman said. “They feel like ‘I don’t want to be a burden on the rest of the community.’ ”
Jewish day schools try to accommodate children with learning disabilities, and most in the Bay Area have learning specialists who work directly with students needing extra attention, Neufeld said. Still, Jewish educators say it’s not realistic for day schools to meet the needs of every student at every level of ability.
“We believe in making a Jewish education available to every family that seeks it,” said Peg Sandel, head of Brandeis Hillel Day School in Marin. “We have students with cerebral palsy, ADHD and dyslexia … We welcome them and work with them. But we can’t necessarily always meet the needs of every student, just like we can’t meet the financial needs of every family.” And that upsets parents of children who aren’t accommodated, many of whom believe that the Jewish community has a special responsibility to help every Jewish child. The parents’ expectations, at times, do not line up with what the schools say they are able to provide.
BHDS in Marin has a full-time director of learning support services on staff, as well as an additional support teacher who focuses on Hebrew tutoring. Similarly, Kehillah Jewish High School has a full-time learning specialist on staff.
But for parents whose children are denied admission, a natural reaction can be frustration and anger. One father whose daughter was not admitted to BHDS in Marin earlier this school year said the school abandoned its Jewish responsibility in rejecting his daughter, who has executive-functioning issues and a learning disability that affects her math and writing skills.
“Are they a Jewish day school, or are they just another academically minded Marin school?” asked the father, who did not want to be identified to protect his daughter’s privacy. “Are you saying that we should amend the seder so we only have four wise sons?”
The father took exception to the fact that BHDS admits students who are not Jewish, yet denies entry to Jewish students like his daughter with learning differences. He believes Jewish day schools have a primary responsibility to serve Jewish students of all abilities, not least of which because they accept money from Jewish federations.
But another parent whose son has ADHD and attends BHDS in Marin said there are many factors in the admission process, including creating a balanced cohort of students whose needs can be accommodated by the available resources.
“There’s an art and a science to building a good class, especially at a small Jewish day school,” she said. “I think it’s in everybody’s interest, and especially the family who’s applying, that the school is honest about what they can support.”
Ezray said when his son, now 14, was in second grade, he transferred to a public school from Wornick because the Jewish school was not able to fully meet Ethan’s needs. Though Ezray was careful to note that Wornick has changed since then, he said he wished there were better ways to accommodate special-needs children within a Jewish learning environment.
“I do think there are some kids who can’t be accommodated, and it would be great if we could put together a school for them,” Ezray said. “I don’t think that’s asking too much.”
Rabbi Darren Kleinberg, Kehillah’s head of school, said the admissions process screens for students who can succeed in a college-preparatory environment, but doesn’t exclude students with special needs or learning disabilities. While Kehillah can’t accommodate every student, he said, teaching to a wide diversity of students is part of the school’s mission. He quoted Proverbs, which instructs: “Teach your child according to his way.”
Elijah just completed his first year of public middle school and made honor roll all four quarters, his proud mother said. He has made real friends, she added, and the family is thinking about planning a bar mitzvah through Friendship Circle.
“His religious learning is not the way I thought it would be,” Grande said. “It’s about parenting the child you have, not the child you expected.”
For information about Jewish special-needs resources, visit www.jewishlearningworks.org/for-families/special-needs.