Challenges, solutions for special needs b’nai mitzvah

Ben Cohen during his bar mitzcah at Congregation Kol Am two years ago.

by Ellen Futterman

Beth Knight recounts the bar mitzvah of her son, Martin Cohen, which took place four years ago, with pride and astonishment. Similar emotions take hold when she tells of her son Benjamin Cohen’s bar mitzvah two years ago.

“We never thought Martin would be able to have a complete bar mitzvah,” says Knight, who is married to Dr. Ruben Cohen and lives in Chesterfield. “We figured it would be some watered-down version.”

When it came to Ben’s big day, she adds, “He has so many anxiety issues that I thought he would have more difficulty (than Martin). I didn’t know if he would be able to tolerate being up in front of people. I didn’t know if he would look at his Torah portion or be able to say his prayers or make eye contact. The rabbi couldn’t touch him to prompt him because he doesn’t like to be touched.”

To Knight’s delight, and to the delight of those in attendance at Kol Am Congregation on both occasions, Martin and Ben shined as each stood on the bimah at their respective bar mitzvahs and gave new meaning to “doing your best.” The brothers, both adopted at birth, have special needs: Martin, now 17, is autistic and has significant development delays; Ben, nearly 15, has Asperger syndrome, which in his case makes having a conversation extremely difficult.

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The Cohen boys are among a growing number of Jewish special needs children nationwide who have recently celebrated, or will soon celebrate, their bar or bat mitzvah. With the help of parents and Jewish educators, including rabbis and cantors, more Jewish children with physical and/or developmental disabilities are being included in this milestone passage, with the ceremony often tailored to accommodate their skill level.

There is no definitive data to show an increase in bar and bat mitzvahs among special needs children, but anecdotally Becca Hornstein and other Jewish community leaders who work directly with these youngsters are convinced the number has mushroomed over the past decade. “As people hear success stories of others, they begin to think maybe my child can do this as well,” says Hornstein, who is executive director of the Council for Jews with Special Needs, Inc., based in Scottsdale, Ariz.

While all mitzvah celebrations take planning and commitment, Hornstein advises to begin this process early when it involves a special needs child. “I suggest writing a Jewish I.E.P. (Individ-ualized Education Program) several years ahead of time,” she explains. “In addition to specific strategies, goals and curriculum that need to be worked out, I encourage parents to dream and imagine what they would like to see on the bimah that day.”

Of course, that vision needs to be balanced by realistically acknowledging the child’s strengths and limitations, she adds.

“What is the child’s capabilities and how is learning best accomplished? Are audio or videotapes helpful? Can material be color-coded or written in large print? Does there need to be a prompter or music or a parent nearby to calm the child?” Hornstein says.

Then she adds: “If you can’t bring the child to the bimah then bring the bimah to the child. If he or she can’t stand still, then for this particular service declare the whole sanctuary the bimah and let the child move around.”

Hornstein also cautions parents to have what she calls a “Plan B” just in case. “I recommend that for all new experiences for these children. It’s a good idea to have a dry run prior to the event,” she says.

“My son is autistic and before his bar mitzvah (in 1987), we invited several classes from his school to fill up the sanctuary and had some of our friends come to a ‘dress rehearsal.’ An empty sanctuary is a whole lot different than one that is filled.”

Hornstein says if a b’nai mitzvah is going to cause too much stress and anxiety for a child, parents might consider forgoing it altogether or having something very small at their home. “No celebration is worth making any child miserable,” she says.

What works best is a team approach, she says, with the parents, rabbis, cantors, Jewish educators and, when possible, the child, working together with one goal in mind: “Developing a meaningful ceremony that recognizes the special needs person as a member of the Jewish community and is an affirmation of Jewish life that transcends all the usual boundaries.”

The making of a rock star

That kind of team approach, which included a lot of planning, commitment and cooperation, went a long way to ensure that Hank Mann’s bar mitzvah at Temple Israel over Memorial Day weekend would be one that would be remembered long after the day was over.

“It was truly an amazing bar mitzvah,” said TI Rabbi Mark Shook. “Hank proved that having a disability didn’t define who he is. He worked hard and he was listened to, just like you would do with any other child. He did absolutely everything that any other child would do at his bar mitzvah and then some.”

From the get-go Hank’s parents, Drs. Eric and Caroline Mann, had few doubts that their son would celebrate his bar mitzvah despite the fact that he has cerebral palsy. Hank, 13, now an eighth grader at Ladue Horton Watkins High School, has limited physical ability and uses a wheelchair to get around. His mother explained that he has poor motor control -managing utensils is hard – and it’s sometimes hard to understand him when he speaks.

But on Saturday, May 29, 150 people seated inside the chapel at TI not only heard Hank, they were deeply moved when he delivered his Torah portion and bar mitzvah speech. “His speech was about not giving up, even when the deck is stacked against you,” says his mother, who adds that her son doesn’t do anything halfway and is very compassionate about the Jewish faith. “He spoke about how rising above challenges is what makes ordinary people extraordinary.

“I was really worried that he wouldn’t have enough energy to speak for an hour and a half,” she continues. “But he spoke so clearly and with such confidence. He was a rock star.”

Caroline Mann says that in addition to 18 months of tutoring and preparation, what helped to build Hank’s confidence was that the chapel recently had been made wheelchair accessible. That allowed Hank to motor his chair up the ramp and read from the Torah using a lectern and microphone on the extended bimah.

“Redesigning sanctuaries to make them accessible to those with physical limitations is something we, and many other congregations (built before American Disabilities Act compliance) are looking to do,” said Rabbi Carnie Rose of Congregation B’nai Amoona.

Rose and other Jewish educators say there is a big push now to “minimize the sense of otherness” and create more inclusion among all congregants, regardless of their unique situation.”

That sense of inclusion is key, says Debbie Morosohk, and extends past physical and mental disabilities. “Special needs can range from learning and developmental issues to physical issues to behavior issues to distance issues,” says Morosohk, director of education at Temple Israel. “We have children who come to us from Illinois and Cuba, Mo. We have one family who drives 11/2 hours to get here.

“We work with every family individually and tailor their experience to what their child can do. Kids who can do more, do more; kids who need to do less, do less. Some kids memorize the Torah blessings in Hebrew while others do everything in English. Some become bar or bat mitzvah later in life when they are ready.

“There really is no ‘right’ way to have a bar or bat mitzvah. ”

Thinking outside of the box

Rabbi Susan Talve of Central Reform Congregation maintains that some of the “coolest” celebrations are the bar and bat mitzvahs of special needs children. “They are the ones we still talk about,” she said. “It’s amazing what’s possible with a little ingenuity and a lot of will.”

Case in point: The bar mitzvah of Aaron Vogel Sorkin five years ago at CRC. Aaron has a rare condition called Charge syndrome, which has left him profoundly deaf, legally blind and with many developmental and learning delays. But that didn’t stop him from becoming a bar mitzvah.

Aaron’s younger sister, Hannah, who was 9 at the time, read the Haftarah in his honor. His middle school and CRC classmates agreed to attend special practice sessions to help lead the prayers and blessings. They also led the congregation in sign language for the closing song.

And Aaron, flanked by Rabbi Talve and CRC’s Rabbi Randy Fleisher, made the sign for tzitzit when he was presented with the talit made by his artist-mother, Jeane Vogel. Fleisher taught the congregation the Sh’ma in sign language so they could sign the prayer with Aaron. And Aaron’s drum teacher, Jake Talve-Goodman, joined the bar mitzvah boy so that they could drum together, accompanied by Fleisher on guitar.

“CRC has always been a special place for Aaron,” said his father, Steve Sorkin. “You can just see it from his composure.”

Rabbi Ze’ev Smason of Nusach Hari B’nai Zion fully expects the youngest of his nine children, 10-year-old Yelli, who has Down syndrome, to become a bat mitzvah when the time comes. He feels that every child, regardless of special needs and abilities, deserves a Jewish education and the help so that he or she can succeed.

“Our job as parents and educators is to help our children reach their potential,” said Smason. “Given that we don’t know the potential of any Jewish child, special needs or mainstream, our job is to give them the support system and love and guidance to reach that potential.

“With all children there are some things they can do and some things they can’t. We need to focus on their strengths and give them enough so they are challenged but not overwhelmed.”

Smason adds that “patience and creativity” can go a long way in helping children accomplish their goals. He and others say no bar or bat mitzvah curriculum should be “cookie cutter,” but rather designed to fit a child’s needs and skills so that with whatever he or she does, there is a sense of accomplishment.

For Martin Cohen, that meant standing tall on the bimah and reading seven lines of his Torah portion. “It was incredibly moving,” recalled his mother. “Here was this kid who had overcome tremendous obstacles, with developmental delays on top of autism and an IQ of 65. Reading is a real challenge for him and somehow he managed seven lines.”

She was equally effusive about her son Ben and the job he did at his bar mitzvah. “He stood up there and looked right at the audience. He said his Torah portion – it was shorter – but he managed. He read his speech. He worked with the rabbi to pick the readings and transform them into the essence of Ben. “Afterwards, we had a picnic and a petting zoo because Ben loves animals. He was thrilled. He interacted with people. Having the animals there enabled him to relax and just enjoy the day. It was amazing.”

Beth Knight credits Kol Am Rabbi Séverine Haziza-Sokol for personally attending to her sons and making sure they were as prepared as possible for their bar mitzvahs.

“It was an honor to teach Martin and Ben,” says Haziza-Sokol. “They possess great strength and were keen to learn more about our tradition. Over the course of their studies they excelled with the added responsibilities.”

That comment makes the Jews with Special Needs Hornstein smile as she adds: “The success of these kinds of ceremonies is a triumph not only for the families, but for the entire Jewish community. The bar or bat mitzvah of a special needs child demonstrates what Judaism is, or should be, about.”