Making bar, bat mitzvahs accessible to those with cognitive disabilities

From The Chicago Tribune:

Trevor Charney (pictured) was 2 when his parents were told he probably would never be able to speak, never learn the names of colors or body parts, never go to the bathroom without help. He was locked inside himself and screamed when people touched him. He could not be consoled.

"It was like someone left the body and took the soul," said his father Stuart Charney, of Buffalo Grove.

The diagnosis was autism. But Nov. 28, Trevor took his rightful place alongside generations of Jewish boys and was called up to the Torah as a bar mitzvah.

In a thin, reedy voice, sometimes clear, occasionally inaudible, 13-year-old Trevor stood before his family, his teachers and his classmates at Congregation Beth Judea in Long Grove. Beaming through the entire service, he recited his Torah portion and led the congregation in prayer.

"So proud," he said afterward. "Hurrah!"

Trevor is one of an increasing number of Jewish special needs children nationwide who are celebrating their bar or bat mitzvahs. For many of their parents, it is an incredibly joyful moment, in which a son or daughter -- whatever his or her ability -- is being recognized as a full member of the Jewish community.

"You are a man in front of God, that's who you are -- no matter what your abilities are or what kind of bar mitzvah you have," said Shari Coe of Riverwoods. Coe's son, Justin, now 18, who attends The Dr. Irving A. and Ruth Hokin Keshet High School for special needs kids in Chicago's West Rogers Park. Five years ago, her son, who is developmentally disabled, medically fragile and voiceless, celebrated his bar mitzvah.
"How do you not do it?" Coe said. "How do you deprive them of that right as a Jewish person to have a bar mitzvah?"

Just because a child has a disability doesn't mean he or she cannot participate in the mainstream of Jewish life, said Abbie Weisberg, executive director of Keshet, a nonprofit for Jewish children and adults with special needs. Keshet, which operates a Jewish day school, religious school, summer camp and adult programs, is one of the first organizations in the country to prepare developmentally disabled kids for a bar or bat mitzvah.

"We don't say 'no,' we say 'how,' " Weisberg said.

When a parent of a special needs child comes to Rana Wechsler, director of the Keshet Sunday School program, for an initial conversation about a bar or bat mitzvah, she said, she determines the parents' expectations and the child's abilities. Then she works with the parent and a tutor to create a program tailored to the child's capabilities. If a child can read, he or she is taught the blessings, prayers, the Torah portion and to read a speech. For a child at a lower functioning level, the task might be to hold a lever down on a talker or hold picture cards corresponding to prayers in a prayer book. One child's bat mitzvah was almost entirely in song.

"I think the parents want the most normal and typical bar mitzvah they can have for their child," she said. "It is a big day in a Jewish child's life. To not have anything, to not have a celebration would feel bad."

Trevor, who attends Keshet's Sunday school and day school, began preparing for his bar mitzvah well over two years ago with a tutor who helped his family figure out how he could participate in the service. Able to read, he studied the Hebrew prayers and Torah portion in transliterated English letters, listening over and over to a recording made by the tutor. He followed the order of the service through a book filled with pictures, each one corresponding to a different segment.

His parents said they tried to create a bar mitzvah that was joyful and meaningful for him. Balloons in rainbow colors, which he loves, festooned his bar mitzvah party. A klezmer band played his favorite music. His friends from Keshet were all invited along with their families.

His mother, Denise Charney, has no idea if her son truly understands what a bar mitzvah is. He can respond to questions about it -- that it takes place when a Jewish boy or girl is 13, that he will read from the Torah. "But he knows it's something," she said. "He's knows it's a celebration.

"To be at this stage that he could go up there," she added, her voice trailing off. "He had to work hard for this. It didn't come easily."

"I've never been so proud of him," his father said. "I've never seen him so happy."

For Beth Judea Rabbi Robert Gamer, presiding over Trevor's bar mitzvah was an incredibly moving experience.

"It's something I will never forget," Gamer said. "He's never going to be normal compared to other kids. But watching him do what every other kid in the congregation is doing -- just knowing what he's gone through and that he wanted to do this -- this is a tremendous accomplishment."

Gamer said there is no reason grounded in Jewish law that a disabled child cannot have a bar mitzvah ceremony. A bar or bat mitzvah is a change in status that marks the moment that a young person is recognized as an adult, not some sort of graduation ceremony that signifies the attainment of a certain level of knowledge, Gamer said.

In recent years, it has become more common for a bar or bat mitzvah to do as much as possible during the service and celebrate with a big event, but traditionally a bar mitzvah simply meant reaching a certain age and being called up to the Torah.

"It is about incorporating them into the full life of the congregation," Gamer said.

Every Friday night for the last five years, the entire Coe family has watched Justin's bar mitzvah video. It is his idea.

They all watch as Justin, who was born without a voice, signed part of the service. His sister and a friend, who he met in kindergarten, recorded Torah sections. To this day, whenever he sees it, he dances in his chair and silently cheers for himself, his mother said.

"My son had a rite of passage that day, and it means everything to him," Coe said. "He knows he was a bar mitzvah."