Panel Discussion Led by the OU’s Yachad and SPIRIT, and BRS, Offers Insights into Parenting Children with Disabilities; Suggests Ways Grandparents and Extended Family Can Be Supportive
“I just need to have a happy, healthy child, and I have that, because the community has warmly embraced Jacob and our family,” said Sandra Seiden at a recent event aimed to educate and inspire families of individuals with disabilities. Sandra is the mother of 25-year old Jacob, who has disabilities.
This sentiment that including individuals with disabilities in family and community smachot and mainstream activities is invaluable both to the children and their parents was shared by three panelists at the program in Boca Raton, Florida. The panelists emphasized that grandparents, extended family, and community members play a critical role in ensuring that parents and children with disabilities do not feel isolated.
Over 160 North American and Israeli grandparents and extended family members of individuals with disabilities attended the program, to learn the best ways to support their loved ones. Hosted by the Orthodox Union’s Yachad and SPIRIT initiative in partnership with the Boca Raton Synagogue (BRS) Empty Nesters Club, “Grand-parenting Your Grandchildren with Special Needs: Strategies from Their Parents,” 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 through the Orthodox Union that’s dedicated to enriching the lives of Jewish individuals with disabilities and their families, via social, recreational, educational, and vocational programs in 10 regions across the United States, Israel, and Canada.
Dedicated to retirees over 60, 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, and diverse recreational activities and entertainment, SPIRIT draws participants from 45 states and 23 countries.
The hour-long program, held at BRS and broadcast on Zoom, was moderated by Yachad Hollywood Program Director Moshe Stuart, who posed thought-provoking questions to parents Debbie Hirsch, Leah Cohen, and Sandra Seiden – whose youngest children all have disabilities.
In an opening d’var Torah, BRS Senior Rabbi Rabbi Efrem Goldberg noted, “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 to make it available and accessible to all.”
Leah Cohen, mother of 21-year old Ari, spoke about her pride in her shul community, and in her father, Avraham Kahn, who brings Ari up to the bima with him every Shabbos in shul.
“My dad is a singer, and he goes up to the bima 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 bima, 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, and the effects on other siblings when 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, 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.”
Cohen also emphasized the tremendous value in supporting one’s children and grandchildren in whatever capacity a grandparent feels most 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 for your children. If they took the child to an appointment, for example, ask how it was, without questioning their judgement. 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 parents, because that’s when real bonding takes place.”
Yachad Director of Talent Development and Volunteer Engagement Rebecca Mayer observed that the partnership program engaged three impactful communities — Yachad, SPIRIT, and BRS — and enabled each to expand their missions’ reach through new channels.
“It was an honor to collaborate with SPIRIT and BRS, and we’re thrilled that their participants had the opportunity to hear from three of Yachad’s remarkable warrior mothers,” she said. “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.”
OU Department of Community Projects & Partnerships Senior Coordinator and SPIRIT Coordinator Rebbetzin Judi Steinig 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.”
Rabbi 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, Shabbos, and Jewish rituals. BRS was honored to have partnered with the OU’s SPIRIT and Yachad to host and share this critical communal conversation.”
To view the recording of the panel, please email Rebbetzin Judi Steinig at steinigj@ou.org.