Special-needs b'nai mitzvah require patience, planning

For most parents, preparing a child for a bar or bat mitzvah is just another of many coming-of-age stresses. But for parents whose children have special needs, the stress can be almost unbearable. Yet arranging b'nai mitzvah ceremonies for such children is not impossible, with a little love and support.

There was a time Julie Venetianer despaired of ever holding her grandson Andrew's bar mitzvah.

"It was a struggle for everyone connected with him," she says. "Everyone" included clergy, teachers and administrators, as well as family.

Andrew, adopted by his grandparents when he was a toddler, was born with Fetal Alcohol Syndrome and other problems, including mild mental retardation, obsessive compulsive disorder, hyperactivity and Asperger's Disorder, a form of autism.

"There are so many initials we can apply to him, it's distressing," says his grandmother.

As his bar mitzvah date approached, he dropped out of classes taught by Louisville, Ky.'s Rabbi Stanley Miles of Reform Temple Shalom.

About to give up, Venetianer recalls Rabbi Miles telling her, "Andrew will have a bar mitzvah at whatever level he is able to."

Andrew learned songs and prayers by rote. Finally, in October 1997, he stepped up to the bimah. Following services, the family held a kiddish.

"I'm not sure that wasn't the lure," says Venetianer, with that mix of straight talk and humor typical of people who have surmounted obstacles.

The ceremony was an important milestone for Andrew, now 21. According to Venetianer, he's had a rough time since then. He currently attends a day program and lives with foster parents. But he'll always be able to look back at that success.

Margie Kommer, whose son Max was diagnosed with dyslexia and Attention Deficit Hyperactivity Disorder, understands the loss of face some parents feel.

"It's very hard to go to a bar or bat mitzvah and see these shining stars, and see your own children struggling," she says.

And, naturally, kids compare themselves to their peers. They can become so disheartened that they give up.

"I had some friends whose children had different learning differences and they were all dropping out of Sunday school and Hebrew school," Kommer says. "I decided I was not going to let (Max) do that and not be bar mitzvahed."

Several years ago, she decided to take matters in her own hands and start a support group at her Reform congregation, The Temple. Soon the group spilled beyond congregational walls to encompass any parents who need support with learning differences and Jewish issues. Called Parents Support Group for Parents with Jewish Children, the group meets every six weeks and is facilitated by Judith Cumbler, a counselor with Louisville's Jewish Family and Vocational Services. There is no charge for attending.

The grass-roots support group soon discovered it was serving more than one generic "special needs" population.

"It turned out to be two different groups of people: kids with academic learning differences, related to learning Hebrew (i.e. mental retardation), and the people with (disorders such as) ADHD. Those people need more tips on how to keep their kids in Hebrew school," Kommer says.

A common problem among ADHD kids is that medication begins to wear off at the end of the school day, when Hebrew school is just beginning. This leads to behavioral and learning problems later in the day.

When asked why parents don't simply continue medication, Kommer, whose three children all have ADHD, explains patiently that adjusting medicines and dosages is hardly as simple as taking another aspirin when one wears off. For instance, "My (middle) son is exceptionally thin and he loses weight on any of the medications," she says.

Thanks to the support group, it's not just parents who have found a helping hand.

"We've been able to educate the rabbis, who have all been terrific, and administrators, to make sure the kids don't slip through the cracks." Kommer adds, "Unless the parents are not interested (in b'nai mitzvah); of course, that's their choice."

In addition, the group helps parents learn how to be advocates and how to navigate through the Jewish system and all the other systems that may not be prepared to deal with such children.

And when her son Max's turn to be a bar mitzvah finally came at The Temple two years ago, all the preparation and support paid off.

"It was wonderful. He was absolutely terrific. It shocked me," she admits candidly, "because I didn't know what he could do and couldn't do. He just studied really hard, which is what dyslexics have to do."

According to Rabbi Robert Slosberg, of Conservative congregation Adath Jeshurun, "The American Jewish community is just now turning its attention to what appears to be a more visible and growing segment in our communities." In Louisville, however, "There have been several such b'nai mitzvah the past 24 years at Adath Jeshurun. They are some of the most incredible and moving experiences I have had as a rabbi."

When The Temple's Rabbi Gaylia Rooks talks about accommodating special needs kids on the bimah, it's clear she's doesn't need much convincing.

"In my opinion, there is no child who can't celebrate becoming bar or bat mitzvah. If they have to be brought on a special ventilator bed that's brought onto the pulpit, then that's what you do."

Once, she helped a 15-year-old Down Syndrome child with severe mental retardation navigate her coming-of-age ceremony. Rooks simply had her read the Shema in English from a card.

"You have to meet each child where they're at," she says. "There's probably not a year goes by where we don't have some kind of special needs or other."

One clue to her strong advocacy may be her own situation. Her son Lev is autistic.

"My son is very, very bright, so academically he did everything everyone else does. The extra work for Lev was to role-play engaging with people and being part of the experience."

The social interaction was exhausting for Lev.

"At one point he turned to me and said, 'I've been really, really good, and looking people in the eye, and shaking hands, and doing all the things you said, and I need a break.' I gave him a break, and he said, 'Thank you, God.'

"That was the most religious moment in his bar mitzvah," Rooks says.

Rooks advises parents not to give up. "Talk with the rabbi or the cantor or whoever makes these decisions in the congregations and really stand up for your child's rights to participate in this beautiful, magnificent religious moment."

Many alternatives can be found when people put their heads together.

"We started having havdalah b'nai mitzvah at the Temple because we had a hearing-impaired child, and also a child who could only read on a third- or fourth-grade level. Instead of doing it on a Saturday morning when the whole congregation comes, their families held a more private ceremony on Saturday night."

In the end, after all, the ceremony is for the child. And if the parents don't stand up for their children, who will?

Says Rooks: "Thirteen is a tough time for all kids, and the kind of self-esteem that comes with this experience is just priceless."

Michael Jackman is a freelance writer in Louisville, Ky.

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