March 10, 2005
Support Opens Way for Special Needs
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 are not impossible, with a little love and support.
Margie Kommer, whose son, Max, was diagnosed with dyslexia and attention deficit hyperactivity disorder (ADHD), 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 said.
And, naturally, children 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 said. "I decided I was not going to let him 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. Soon the group spilled beyond congregational walls to encompass any parents who needed support with learning differences and Jewish issues. The 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," Kommer said. "Those people need more tips on how to keep their kids in Hebrew school."
A common problem among ADHD children 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, said that adjusting medicines and dosages is hardly as simple as taking another aspirin when one wears off. She said, for instance, "my [middle] son is exceptionally thin, and he loses weight on any of the medications."
It's not just parents who have found a helping hand through the support group.
"We've been able to educate the rabbis, who have all been terrific, and administrators to make sure the children don't slip through the cracks," Kommer said, "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 other systems that might not be prepared to deal with such children.
When Max's turn to be a bar mitzvah came two years ago, all the preparation and support paid off.
"It was wonderful," Kommer said. "He was absolutely terrific. It shocked me, 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 Conservative Rabbi Robert Slosberg of Adath Jeshurun in Louisville, Ky., "The American Jewish community is just now turning its attention to what appears to be a more visible and growing segment in our communities."
When Rabbi Gaylia Rooks talks about accommodating special-needs children on the bima, it's clear she's doesn't need much convincing.
"There is no child who can't celebrate becoming bar or bat mitzvah," she said. "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's 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," Rooks said. "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," Rooks said. "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 said.
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," she said.
Many alternatives can be found when people put their heads together.
"We started having Havdalah b'nai mitzvah ... because we had a hearing-impaired child, and also a child who could only read on a third- or fourth-grade level," Rooks said. "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?
"Thirteen is a tough time for all children," Rooks said, "and the kind of self-esteem that comes with this experience is just priceless."
Michael Jackman is a writer, radio commentator, writing instructor and consultant who lives in Louisville, Ky. His Web site is www.mjfreelancer.com