|From left, Moshe, Dov Hirth of Aleh, Moshe’s younger brother, Adir Schwartz-Settenbrino, and Adir’s father, Dr. Terry Davies.|
Why did Adir Schwartz-Settenbrino choose to celebrate his bar mitzvah in Jerusalem with a cognitively disabled Israeli “twin” he had never met, rather than party with his peers at home?
“The main reason I gave up my bar mitzvah with friends to twin it with a disabled child is because when you have it by yourself, getting all the attention and gifts, [you] feel too self-centered,” explains the Clifton youth, a student at Joseph Kushner Hebrew Academy. “I wanted to be able to take what I have the opportunity to do and share it with somebody who wouldn’t have had it otherwise.”
Adir’s “twin,” Moshe, lives in one of four group homes run by Aleh (www.aleh.org), Israel’s largest network of residential medical and rehabilitative facilities for children with severe physical and cognitive disabilities. He suffers from epilepsy along with balance, attention, concentration, and behavior deficits that made it difficult for his financially strapped parents to care for him at home.
Dov Hirth, Aleh’s bar/bat mitzvah projects coordinator, says twinning with overseas boys and girls has been offered for about the last 10 of Aleh’s 30 years. Since Aleh client families are not required to pay anything toward their children’s care, the suggested twinning donation of $2,500 affords Aleh the ability to provide equipment and therapies for the child above what the government covers – say, an upgraded breathing machine, three months of a certain therapy, or a computer program required for communication. It also allows many of these children to have a coming-of-age celebration they would not otherwise be able to enjoy, for both physical and financial reasons.
Alhough Adir’s family came to Israel for the life-cycle event, that is not a requirement. “We send a video or other material about Aleh to show at the party, and the family may choose to buy favors made by our children in their vocational workshops, available on our website,” says Hirth.
“Other families do come here, and in that case we offer services, as we did for Adir’s family, from booking the restaurant to booking a photographer, at no additional charge.”
Of the nine Aleh twinning projects over the past 12 months, three involved children from New Jersey, says Hirth. Adir’s 15-year-old brother, Ariel, also twinned with an Aleh teen for the marking of his becoming a bar mitzvah.
“The boys had a choice of a bar mitzvah party with their friends or to go to Israel and twin with a severely disabled child, and both of them chose to do this,” says their mother, Susan Settenbrino. “I was so proud of them.”
Neither of her sons’ “twins” was able to interact verbally, but they stood next to the Schwartz-Settenbrino boys as they chanted their Torah portions at the Western Wall. In a video of Adir’s bar mitzvah, held on Dec. 22, one can see him taking Moshe’s hand as he arrives with his family. “It’s awkward, but it teaches them how fortunate they are and how to give to others when becoming a man,” says their mother.
Moshe had not seen his parents and three siblings for a long time, adds Settenbrino, so providing the opportunity for their reunion “made my son feel very good.” She wants to encourage others to offer their sons and daughters this option. “I think everybody should do it; it was the most beautiful bar mitzvah I’d ever been to.”
Adds Adir: “Although I think Moshe didn’t know what was going on, I still think that his ‘growing to be a man’ part in life was fulfilled.”
The Clifton family’s contribution will go toward purchasing equipment for the Snoezelen room at Moshe’s facility. Snoezelen is a therapeutic multi-sensory room that heightens the senses while creating an atmosphere of relaxation and calm. “For a boy like Moshe, who suffers from epilepsy, the Snoezelen is an amazing place,” Hirth says.
This type of equipment is not easily affordable for an organization that must fund-raise a good chunk of its annual $20 million budget. He explains that the Israeli government covers 75 percent of operational costs and 50 percent of capital costs.
“Our sponsoring ‘twins’ walk away from the experience feeling like a million dollars, like they’ve changed the world,” says Hirth.