Unable to walk, talk or express their feelings, four seriously disabled children come of age at the Western Wall.
By MAAYAN JAFFEAMOS BUCHNIK, 23, carries Chaim at the Western Wall. As a volunteer, Buchnik has been with Chaim for the last five years.(photo credit: Courtesy)
A bar or bat mitzva is an important rite of passage for every Jewish boy and girl. But what if a child cannot walk, talk or express his or her feelings? “They too deserve to experience something special and meaningful, they too deserve to mark this rite of passage,” says Zahava Altshul, a teacher at ALEH Jerusalem. “ALEH makes it happen.”ALEH, Israel’s largest network of residential facilities for children with severe physical and cognitive disabilities, serves 80 residential and 30 outpatient children at its Jerusalem branch, located in the Romema neighborhood. The organization, according to Jerusalem area director Shlomit Grayevsky, focuses on offering “normal” experiences to children with special needs.“We make special accommodations, but the experiences will be the same,” explains Grayevsky. “Staff cannot say, ‘It is not possible.’ Everything can be achieved. Staff is required to think differently, outside the box, bigger… It is their [the children’s] limitations, but it is our challenge.”The bar and bat mitzva curriculum and celebration is no different.This year, four children – two boys and two girls – came of age. Throughout the year, they were taught about the mitzvot most applicable to their lives. There was a visit to the Western Wall, a trip to pray at Rachel’s Tomb, and on June 9 a final party will take place at the school.Teachers went above and beyond to help the children recognize the significance of the day and feel a part of it. For example, the children made a sensory prayer book with limited prayers but unbridled interactivity.Bright colors draw their eyes. Textures allow them to connect, for example, the feel of the towel they use for drying their hands after netilat yadayim [ritual hand washing] with the blessing.The children were charged with making a havdala set, too. The final product was what one would normally expect – a candle, a kiddush cup and a mesh bag of spices.But ALEH staff had to create a special piece of equipment to allow children who have only slight movement to take part. A funnel was used to make it easier for the children to move spices from their original container into the tiny spice bags.“It takes a lot of technology,” said ALEH Jerusalem principal Rachel Fishheimer, “but also a lot of love.”The bar mitzva highlight is the visit to the Western Wall. There, the children touch the stones of the ancient wall, receive a certificate from the Kotel rabbi, and are joined by volunteers from an area yeshiva, who help them dance with the Torah.“They get it,” says Altshul, of the way the bar-mitzva boys take in the Western Wall experience. “They soak it up.”This year’s event was more emotional than usual, she explained, because for one boy it was not only a celebration of his coming of age, but a celebration of his life. Just months before Chaim was to turn 13, he was diagnosed with a particularly virulent form of leukemia.He initially responded poorly to medical treatment and doctors said his chances of recovery were slim. But ALEH’s devoted staff and a robust team of volunteers rallied in support.“Chaim was not left alone for a minute,” says Grayevsky, who notes the constant presence of love, support and cheery faces helped Chaim through the most difficult days. She is convinced it pushed him to recover, even more than the medical intervention.Less than two months to his bar mitzva trip to the Western Wall, Chaim returned to class.“When we were planning the bar mitzva celebration, we were planning like he was going to be there… We stayed positive and included him, though in the back of our minds, we really didn’t know,” says Altshul, who has known Chaim for the last six years. “He was so sweet at the Kotel, just smiling as the volunteers danced around him. It really added a whole other layer of appreciation and thankfulness and just celebrating each child this year. It was a miracle that he was healthy enough to be there.”Amos Buchnik, a 23-year-old volunteer who has been paired with Chaim for the last five years, stood by the boy’s side through the worst of times. In an amazing gesture of empathy, Buchnik even shaved his own head to show solidarity with Chaim, whose hair was lost through chemotherapy treatments.Buchnik purchased a kippa for Chaim for his big day.“He never puts a kippa on his head,” says Chaim’s mother, Sara , with a smile. “But he kept it on for at least five minutes. He didn’t touch it.”She continues: “When they [the staff at ALEH] told me about what was going to be at the Kotel, I thought to myself, ‘Why are they going to all this trouble?’ But after I was there and I saw how the volunteers came out and cared for Chaim, I saw Chaim smile. It was so unique, so special; it was amazing.”Notes Buchnik: “Over the last few months, and especially that day at the Kotel, I started to truly understand what it means to have ‘chaim’ [life].”
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