All Our Children
It began like any other d’var Torah.
“Good afternoon. My portion today is Vaera from the Book of Exodus,” said Joel Friedman, as he looked out at family members and friends who had gathered for his bar mitzvah at Beth Israel Congregation in Owings Mills.
But Joel’s d’var Torah and his bar mitzvah were rather special.
“The portion is about Moses and a conversation he has with God,” he continued. “Moses argues with God that he is not the best leader for the Jewish people. Moses feels embarrassed because he has a speech impediment and is nervous about getting people to listen to him and take him seriously. … Just like Moses, I have a special need, and mine is called autism. If I had to lead people, like Moses, it would be hard. My autism sometimes makes talking to other people and communicating difficult.”
As Joel prepared for his bar mitzvah, his parents, Jane Rossheim and Frank Friedman of Owings Mills weren’t always sure it was worth the effort. They credit the staff and clergy of Beth Israel Congregation for helping Joel through the process.
“Joel had been going to [religious school at] Beth Israel since the second grade, and they were great,” Rossheim says. “They always provided him with an aide, either a teacher or an older student, and he loved going there. He especially liked learning the [Bible] stories and even carried his siddur around with him. But there were a lot of behavioral issues. It didn’t always go well, and there were times when we had to pick him up. I didn’t know if he was committed to it.”
As Joel’s bar mitzvah approached, he began weekly meetings with Beth Israel’s Cantor Roger Eisenberg, who is also a music therapist.
“Joel loved his meetings with the cantor. He ended up doing all three parts of the Saturday Mincha service, and he gave a great little speech,” Rossheim says. “He was so proud of himself. People saw him in a new light. Afterward, my sister said to me, ‘Out of all the kids who go through this, I think Joel got the most out of it.’ He felt like a rock star. We knew we had made the right decision.”
A Bat Mitzvah For Two
This May, the Tanenholz twins, Lily and Heidi of Pikesville, will share their bat mitzvah on the bimah at Baltimore Hebrew Congregation. As in most families, months of preparation will go into the event, as well as into the post-bat mitzvah party. Yet, in planning their simcha, the Tanenholz girls and their parents, Susan and Paul, have had to contend with challenges unimaginable to other families.
While Heidi is typically developing, Lily was born with a rare genetic disease called mucolipidosis type 4 (ML4) most commonly diagnosed in children of Ashkenazi Jewish descent. Children such as Lily usually develop only to the level of a 18-month-old in terms of language and motor functioning. The disease also causes retinal deg-eneration and corneal clouding, often leading to blindness, digestive problems and anemia.
Despite her multiple disabilities, Lily attends the Maryland School for the Blind; she also is inv-olved with Gesher La Torah, a Jewish education program for children with significant disabilities, through the Macks Center for Jewish Education, an agency of The Associated: Jewish Community Federation of Baltimore. Rachel Turniansky, the program’s special needs coordinator, says students at the Gesher La Torah learn Torah stories, Hebrew language and reading and are taught about Jewish holidays and life-cycle events. The staff at Gesher La Torah, which includes special needs and Jewish educators, frequently works with families and synagogues to provide students the support they need to create meaningful b’nai mitzvah ceremonies.
Although Lily is unable to speak, her parents want her to be on the bimah with Heidi and to take part in the bat mitzvah service to the best of her ability. So they came up with a plan. Heidi will recite her Torah reading and when the time comes for Lily to read her own parsha, she will press a button on her assistive technology device that will play a recording of Heidi reading it.
“We consulted with a rabbi,” says Paul Tanenholz, who is president of the ML4 Foundation. “We wanted this to be authentic, not a parody of a bat mitzvah.”
The Tanenholzes also received a waiver so that Lily would be able to use the device despite Shabbat prohibitions.
While some youngsters might balk at having to share their simchah with a sibling, the Tanenholzes say Heidi has been willing and enthusiastic about sharing her bat mitzvah with Lily.
“Heidi shares everything with her sister,” says Susan Tanenholz. “She is always concerned about whether Lily will enjoy the bat mitzvah. She’ll ask, ‘Do you think Lily will like this theme or this music, this color?”
Lily and Heidi’s bat mitzvah party at Baltimore Hebrew Congregation will be decorated like a discotheque.
“We’ve hired entertainers, and we’ll have light-up tables,” says Paul Tanenholz. “Heidi thought that Lily might be able to see the lights.”
Since Lily and many of her friends aren’t able to eat solid food, there will be a Lily-friendly buffet with hot pureed foods such as potatoes and applesauce. For their mitzvah project, the twins will collect money for the ML4 Foundation.
It’s been almost a decade since Joey Minch’s bar mitzvah, but his father, Dr. Robert Minch, still remembers it as a “special and amazing accomplishment.” Joey Minch, now 22, had his bar mitzvah when he was 15. Although it’s not clear exactly what has caused his disabilities, he was born with low muscle tone and has experienced significant cognitive and developmental delays. In some ways, however, Joey is precocious. He was nonverbal until age 6 but learned to read before he could speak. He also has a great sense of humor, a good vocabulary and a fantastic memory.
Since Joey has no diagnosis, his prognosis is also unknown. Therefore, his parents have never been sure of their son’s capabilities.
“We didn’t know what he would be able to do, so we’ve always tried to raise the bar to see how far he could go. He has risen to the occasion,” his father says.
Joey attended a mainstream Hebrew school for several years and had a year of private tutoring to prepare for his bar mitzvah. He didn’t sing, recalls his father, but he was able to read from the Torah, give a speech and say the bracha.
“He studied for months,” says Dr. Minch.
“We had marshmallows and ice cream, and everyone came,” Joey says. “I felt great that day. I was entering manhood. It was exhilarating.”
“There wasn’t a dry eye in the house,” says Dr. Minch. “He did it because we pushed him, and Har Sinai [where the bar mitzvah was held] was really committed to making it right.”
Joey continues to rise to the occasion. Last year, he graduated from Kennedy Krieger High School with a Baltimore City diploma. He now works for the Gribben Center, a program through Catholic Charities, putting together first-aid kits and delivering meals.
When The Time Is Right
As the parent of a 10-year-old son on the autism spectrum, as well as director of congregational learning at Har Sinai, Jo-Ellen Unger has given a great deal of thought to how and when her son, Micah, will become a bar mitzvah.
Since relocating to Baltimore from Jacksonville, Fla., a year ago, Unger and her family have become thoroughly immersed in the Har Sinai community. Micah, 10, loves being at the synagogue and attends services most Friday nights. When he was younger, Micah was placed in religious school classes with younger children, but this year, Unger is piloting a new program for children with learning differences at Har Sinai. She is pleased that
programs such as Gesher La Torah exist in the community. However, she and her husband, Adam, feel strongly that they want Micah to be educated at their family synagogue.
“Chronologically, Micah should be in the fifth-grade religious school class. When I walk in that classroom, where kids are working on their prayers and blessings, I feel like he should be there,” says Unger. He’ll be 13 in three years, but my husband and I are really struggling with this issue. Do we put him up there on the bimah when he may not be ready to accept the responsibilities of being a bar mitzvah?
“We just started conversations about this with Rabbi [Benjamin] Sharff. I don’t know what will be meaningful for Micah yet. My congregation has been so embracing. Micah doesn’t get [strange] looks from other congregants; we’ll take him out if he is being disruptive during the service. He understands that being Jewish is tied to relationships [within the community.] There is no Judaism without this. I know the congregation will be supportive whatever we decide.”
Simone Ellin is JT senior features reporter — firstname.lastname@example.org