Ilyse loves singing Hebrew songs that she learned at Camp Ramah in New England. She loves watching the camp video where she can relive her summer memories as an Amitzim (special needs) camper, laughing with all her friends. That sense of Jewish connection and belonging that Ilyse feels at camp is exactly what we, as her mother and older sister, dream of finding for her in her school year and year-round in her adult life. Yesterday, Ilyse turned twenty. She has Down Syndrome.
But we have learned the hard way that for Ilyse and her peers in the “college years,” there are very few places – either schools, or year-round programs – that provide a Jewish atmosphere.
Of course, all parents dream of seeing their children graduate and move on to college. We looked to enroll Ilyse in a full-time residential school when she turned 19 so that she would have access to education that would further support her emerging independence. Mostly, we imagined a rich social atmosphere where Ilyse would have fun with friends and build deeper bonds.
But when looking at these schools, administrators often told us that although there were other Jewish students on campus, there were minimal organized efforts to help them create Jewish life. Now, school administrators have a lot to manage in creating the right educational opportunities for these students and, at times, even campus life in general is not a priority, much less religious life.
Nonetheless, there is a notable exception to this rule: in New Haven, Connecticut the local Jewish Family Services has extended a Jewish program for young adults to ensure access for residents at Chapel Haven. Similarly, Gateways-Access to Jewish Education piloted a project last year that invited Ilyse and her peers into life at Tufts University Hillel.
The Chapel Haven initiative helps students of the school experience holiday observance, Torah study and fellowship. Synagogues and Jewish agencies could follow this model, reaching out to residential schools for young adults with special needs to enable Jewish participation. Synagogue members could offer to drive students to shul regularly, host Shabbat meals or invite them and drive them to cultural events and local Jewish programs at centers like the JCC. Rabbis and educators could arrange to lead discussions or holiday celebrations at a school.
Ilyse gets so much joy out of participating in a community and being a regular part of our synagogue at home. She is up at the bimah almost every Shabbat leading Aleinu or Ein Keloheinu, her two favorite prayers. When living away from home, it would be particularly meaningful for her to still feel part of regular Jewish ritual. Not to mention the benefit to a local community who would get to experience Ilyse's ruach (spirit), which would enhance any service.
At Tufts, Gateways ran a pilot that gave Ilyse and her peers the access to Hillel and other campus Jewish outlets that typical college students take for granted. The program provided a monthly campus Shabbat experience for young adults with disabilities. Ilyse enjoyed praying there, participating in a Torah discussion and having dinner at the Hillel dining hall with other, typical students. We would love to see this project continued and expanded or replicated at other Hillels.
On Ilyse’s most recent Individual Education Plan, the government document that defines her educational goals, there was no box to tick that would express how much we dream of a future for Ilyse that includes belonging to a Jewish community. Belonging is about finding opportunities for Ilyse to contribute her talents to the Jewish community and for her to be included in her Jewish "family.” As Ilyse's immediate family, we hope when we're not nearby that others in the Jewish community will reach out to her and make her feel at home.
Betty Ross is a wife and mother of two daughters. She has an MSW and advocates for disability and environmental issues. Her older daughter Becky Voorwinde is Co-Director of The Bronfman Fellowships.
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