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May 10, 2007

Nes Gadol calls its first autistic students to the Torah

B'nai mitzvah -- and a big miracle -- at West L.A.'s Vista Del Mar

http://www.jewishjournal.com/bar_and_bat_mitzvahs/article/nes_gadol_calls_its_first_autistic_students_to_the_torah_20070511


Neal Katz runs up to the ark and opens the door. Blond-haired and bubbly, he points to the scroll, unable to articulate his desire.

"Do you want to touch the Torah?" Cantor Steve Puzarne asks.

The 13-year-old is autistic and nonverbal. Instead of using words, he mumbles enthusiastically.

It's a typical Wednesday afternoon on the bimah at West Los Angeles' Vista Del Mar, a onetime Jewish orphanage that evolved into one of the nation's largest, most comprehensive child services centers. Puzarne and Neal are in the campus' aging sanctuary as part of Nes Gadol, an effort launched by Vista Del Mar last February in conjunction with The Miracle Project to help children with varying degrees of learning challenges become sons and daughters of the commandment.

The cantor lifts the Torah out of the ark and into his own arms, resting its weight against one shoulder. He tells his student to kiss rather than handle it. Neal is carefully reverential as he leans in to make contact with the Torah's cover.

"Do you want to try carrying it?" Puzarne asks.

But the teenager isn't listening anymore. He takes off up the aisle, and Puzarne follows him outside, still carrying the Torah, hoping to reconnect with the boy in the foyer when he's ready.

Neal's mother, Elaine Hall, 50, is a children's acting coach and founder of The Miracle Project, a theater and film arts program designed to help children with autism and other special needs. Hall said a bar mitzvah for her son seemed unrealistic until she received a phone call from Vista Del Mar CEO Elias Lefferman last October with the idea for Nes Gadol.
"I never conceived he'd ever have a bar mitzvah," she said. "You never think about that."

On May 28, Neal and 15-year-old William Lambert will become the first students from the group to be called to the Torah. For special-needs teens, the specifically tailored program represents a way to connect with a Jewish rite on their terms. And the parents say it's particularly gratifying to find a way for their children to be included in the tradition.

Nes Gadol, Hebrew for "a great miracle," is one of many outreach efforts in Los Angeles aimed at boys and girls with special needs, including synagogue programs like Temple Beth Am's Koleinu, Valley Beth Shalom's Shearim and Temple Aliyah's Otzar. But Vista Del Mar's program is the first nondenominational one, which organizers hope will allow them to reach special-needs families who might not have considered joining a synagogue for their child's bar or bat mitzvah.

While Hall runs the program, she credits Vista Del Mar's Lefferman with developing the concept. "He's a visionary," she said. "He's really quite extraordinary."

Nes Gadol is funded through a grant from the Rosalinde and Arthur Gilbert Foundation.
In addition to Hall, the program's staff includes Puzarne, founder of Breeyah, which develops creative worship services throughout the country; Rabbi Shawn Fields-Meyer, who leads Ozreinu, a spiritual support group for families with special-needs children, and Jackie Redner, rabbi of Vista Del Mar Child and Family Services; Karen Howard, a music therapist; and Rachelle Freedman, a Jewish theater instructor. Volunteers and typical b'nai mitzvah students with mitzvah project assignments also participate in the program, and Rabbi Bradley Shavit Artson, dean of the Ziegler School of Rabbinic Studies at American Jewish University (formerly the University of Judaism), serves as its adviser.

Currently seven students are enrolled in the program's first year, all of them boys who live at home. More than 80 percent of Americans diagnosed with autism are male.

Children diagnosed with autism typically exhibit impaired social interaction, impaired communication as well as restricted and repetitive interests and activities. Social interactions can be awkward and conversations can elicit unusual, incongruous responses. Many autistic children have repetitive body movements, attachment to objects and an aversion to changes in routines. The disorder is usually diagnosed between the ages of 2 and 3 and can range from mild or high-functioning to severe in degrees of affliction.

In California it's the leading disability among children, ahead of cancer, diabetes and Down's syndrome, the state Department of Developmental Services reports. One in every 166 children today is born with the disorder, according to the Centers for Disease Control and Prevention, and some studies are now putting that number closer to one in every 150 children.
While there are a number of theories regarding the rise of autism, no definitive cause has been identified.

Hall adopted Neal from Russia through Vista Del Mar when he was 2 years old, and she said his small size made him look to be about 9 months old at the time. He was diagnosed with severe autism shortly before his bris, at 3 years old.

At 7, Neal's body movements were so out of control that Hall couldn't keep pictures or mementos on the walls of her home because he would knock them down, and she didn't have time to cook while he was awake, because she spent her time trying to engage him and keep him safe.

After traditional therapy failed her, she implemented a "floor-time approach" with Neal and joined him in his world. "If he wanted to spin, we'd spin," she said. "When he wanted to stack toy cars, we would stack cars with him until he one day gave us one of his cars and made eye contact."

Despite his linguistic challenges, Neal can verbalize some words, like "momma," and communicates with a portable TypeSmart keyboard that vocalizes his thoughts for him.

Now in Santa Monica's Lincoln Middle School, he is enrolled in five regular classes with the assistance of an aide and two classes for learning-disabled students. He even has two friends who are typically developing teens.

"Everything with autism just takes more time," Hall said. "But he wants people to know what he thinks." With the help of his TypeSmart and a speech therapist, Neal recently talked about his bar mitzvah.

"It will be a great celebration, a happening," Neal wrote. "It is when I will make a commitment to the Torah."

And despite his inability to speak, his thoughts about his Torah portion, Beha'alotecha, come through loud and clear.

"To pick a humble act is how I show patience to my life each day. I have to be humble to God when I am challenged with autism. My humility comes in my love and humor," he wrote.

The other student due to read from the Torah this month with Nes Gadol is William Lambert.
His speech is matter-of-fact and monotone. There's no inflection or subtext to the 15-year-old's words, nothing added, but also nothing held back. He will tell you his bar mitzvah wasn't his idea, but the process has helped him build self-confidence in an area where he is struggling academically.

"To tell the truth, originally my parents sort of forced me.... Well, I'm also now doing it for myself, because now I can actually learn a language very well," he said, referring to his Hebrew study.

Since he has been struggling in Spanish at Village Glen in Culver City, one of several day schools serving special-needs children administrated by The Help Group, William was worried that his difficulties with language acquisition would follow him in the Hebrew portion of his bar mitzvah program. But so far that hasn't been the case.

"My parents put me there because they thought I'd have a hard time learning Hebrew. But I'm really used to it now," he said.




Nes Gadol uses a prayer book and materials inspired by a special-needs program used by the Masorti movement, Israel's version of Conservative Judaism. Puzarne said there wasn't much time to schedule programming once he and Hall took on the assignment. "We had to pull together a program in months," he said. "We had to illustrate almost every Hebrew word, and I'm now taking that back to my typical kids."

Some autistic children learn visually, while others learn through auditory cues or movement.

Visual icons are placed over every Hebrew word in the prayer book, and CDs of prayers are also distributed to students to help them study. Prayers are also taught through movement and storytelling for those who are kinesthetic learners.

Since joining the program in February, William said he's become used to the language study, but he feels he doesn't connect well with his special-needs peers.

"There's a lot of people that sort of have these disabilities, and there's nothing wrong with it, but I don't get along with them," he said.

After his bar mitzvah this month, William said he isn't expecting to join a synagogue or continue with his Jewish learning. However, he may continue to study Hebrew, "except at a different place," he said.

Before William turned 13, his father, Lambert, and mother, Anna Esther, investigated synagogue-based bar mitzvah programs. Lambert said finding a program that wouldn't require membership or cost the family thousands of dollars was difficult. Another option, one-to-one private tutoring, would have been prohibitively expensive, he added.

"Not being a member really limits your options," said Lambert, a 56-year-old high school chemistry teacher.

Lambert and Esther found the b'nai mitzvah program through word of mouth at Vista Del Mar, where the family's younger son, who is more severely autistic, attends school at the outpatient Julie Ann Singer Center.

The Vista Del Mar b'nai mitzvah program is costing the families hundreds, rather than thousands of dollars.

Diane Isaacs, 45, said that her family never expected to have a bar mitzvah for her 12-year-old son, Wyatt, since they aren't religious.

"It was really Wyatt's choice," she said.

His bar mitzvah date is set for Feb. 11, 2008, but his mother thinks that might be a bit too soon.

"When you think of a bar mitzvah, it's kind of like this whole intensive training," she said, adding that she wished her son could experience the same years-long Hebrew school background that his other Jewish friends will have. "But he surprises me. He might drop in and get it on a very profound level."

Isaacs says that the program's more relaxed approach to the bar mitzvah training is probably better for her son, whose autism was diagnosed when his academic performance slipped in first grade. "It's going to be a good way for him to experience it, instead of stressing him out and giving him anxiety," she said.

Wyatt, who appears with fellow student Neal Katz in the Miracle Project documentary "Autism: The Musical," says what is intimidating him the most right now is the thought of facing an audience as he stands on the bimah.

"Standing in front of all those people is going to be hard, because you have all those eyes on you," Wyatt said.

For all these boys, Nes Gadol has provided a spiritual community in which to develop friendships with teens who share a similar diagnosis. While Wyatt's own bar mitzvah is still nearly a year away, he plans to attend Neal and William's bar mitzvah on May 28.

"That's the way friends work," he said.

And while he's nervous about the possibility of making a mistake in front of friends and family during his own simcha, he's just as excited about the very things typical boys like about their bar mitzvah: presents and being called a man.

"Because then I can be a little more mature, like I'm a man," he said.

For more information about Nes Gadol, call (310) 836-1223, ext. 615, e-mail elainehall@vistadelmar.org

See also:

Vista Del Mar
http://www.vistadelmar.org/

The Miracle Project
http://themiracleproject.com/

Autism: The Musical
http://www.autismthemusical.com/

Nes Gadol Flyer

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