Including individuals with disabilities in communal activities was a topic pressed by three panelists as part of a recent program hosted by the Orthodox Union’s Yachad and SPIRIT initiative, in partnership with the Boca Raton Synagogue Empty-Nesters Club, titled “Grandparenting Your Grandchildren With Special Needs: Strategies From Their Parents.” More than 160 North American and Israeli grandparents, as well as family members of individuals with disabilities, explored the pride and challenges of raising children with disabilities from the perspectives of three mothers of adult sons with developmental disabilities.
Yachad is an international organization run by the Orthodox Union geared to enriching the lives of Jewish individuals with disabilities and their families through social, recreational, educational and vocational programs in 10 regions across the United States, Canada and Israel.
Dedicated to retirees ages 60 and over, SPIRIT (Stimulating Program Initiative for Retirees That Inspires Thought) is a division of OU’s Department of Community Projects & Partnerships. Offering renowned speakers on Torah-based and secular topics, along with diverse recreational activities and entertainment, SPIRIT draws participants from 45 states and 23 countries.
The hour-long program, held at the synagogue in Southeast Florida and broadcast via Zoom, was moderated by Moshe Stuart, Yachad program director in Hollywood, Fla., who posed questions to parents Debbie Hirsch, Leah Cohen and Sandra Seiden, whose youngest children have disabilities.
In an opening d’var Torah, Efrem Goldberg, senior rabbi at Boca Raton Synagogue, explained that “this work is critically important because fundamentally, Jewish people are committed and believe that we have to make room for everyone. Our heritage, our people, who we are and our sacred Torah are not available only to people who meet certain criteria. By definition, Hakadosh Baruch Hu gave us the sacred Torah for us to share and make it available and accessible to all.”
Leah Cohen, the mother of 21-year-old Ari, spoke about her father, Avraham Kahn, and how he has helped engage her son in Jewish life.
“My dad is a singer, and he goes up to the bimah every week to sing Aleinu,” said Cohen. “One week, he decided, ‘I’m going to take my non-verbal grandson to sing in the choir.’ When Ari is on the bimah, he waves his hands to lead everyone. He also goes up to recite Birkat Kohanim with my father and husband, and everyone thanks Ari after shul for blessing them. It’s such a proud moment—not just for Ari and my father, but for our whole community. They truly embrace him. They give him the Torah to carry through the aisle, as well as other jobs. It’s really a beautiful thing to see your child being included.”
The panel also touched upon the emotional and physical demands of being “on” 24/7 in terms of caregiving, and the effects on other siblings when their parents’ attention is focused on the child with disabilities.
“I think the best way a grandparent can be supportive is by giving the family a little respite,” said Debbie Hirsch, the mother of 35-year-old Michael. “Take the child with disabilities out for a little while, so that his or her parents can spend quality time with the other children. If parents are helping their mainstream children with homework, the grandparent could engage with the child with disabilities in a separate activity. Giving our family some time to breathe without having additional pressures was very helpful.”
“I just need to have a happy, healthy child, and I have that because the community has warmly embraced Jacob and our family,” said Seiden, the mother of 25-year-old Jacob, who has disabilities.
Cohen emphasized the value of supporting children and grandchildren in whatever capacity a grandparent feels comfortable.
“There’s no single way to support your grandchild,” she said. “While you may be physically unable to help care for him or her, you can still serve as a listening ear. If they took the child to an appointment, for example, ask how it was, without questioning their judgment. Acknowledge what they are going through, and let them know that you are there for them.”
Seiden added, “It’s really important to focus on what the child with disabilities can do, rather than his or her limitations. I also think it’s critical to build a relationship with your grandchild alone in the absence of his or her parents because that’s when real bonding takes place.”
Rebecca Mayer, Yachad’s director of talent development and volunteer engagement, noted that the partnership program engaged three entities—Yachad, SPIRIT and the synagogue—and enabled each to expand their missions’ reach through new channels.
“Through their candid and heartfelt stories, attendees were able to gain a deeper understanding and enhance their skills in supporting individuals with disabilities and their families,” she said.
Rebbetzin Judi Steinig, senior coordinator of OU’s Department of Community Projects & Partnerships and coordinator of SPIRIT, agreed.
“It was a wonderful joint program,” she said. “The reactions of those who participated in person and on Zoom highlighted the importance of appropriate support for grandchildren with disabilities. SPIRIT is truly grateful for the hospitality of BRS and the work of Yachad in coordinating such a powerful panel of Yachad parents.”
Goldberg underscored the event’s importance in helping to promote the inclusion of all people with disabilities within the Jewish community.
“As a community, we can always grow, and learn new ways we can further include Jewish individuals with disabilities and their families in shul, Shabbat and Jewish rituals. The synagogue was honored to have partnered to host and share this critical communal conversation.”
To view the recording of the panel, email Rebbetzin Judi Steinig at: steinigj@ou.org.