Jewish Adulthood for People with Special Needs

by Iris Weiss

Everyone knows that there are children born with disabilities, but it is nevertheless a shock when it happens to you. Parenting is difficult even under the best of circumstances; and when you have a child with special needs it is a great deal more difficult.

Daniel was diagnosed with a very rare chromosomal abnormality when he was two years old. At the time, there were only 20 known cases in the world, and they varied enormously. As a parent, you want to encourage your child to make the most of his or her abilities, but having unreasonable expectations is not good either for you or for your child. The problem for us, of course, was that we had no idea what was reasonable in Daniel’s case, and we spent a great deal of time and energy trying to figure it out so we could help him. Add to that the many, many doctor visits (if we got out of an appointment without a referral to another specialist, it was a good visit); several surgeries; PT and OT and speech therapy; and at the same time trying to give our older son as normal a life as possible, and it got pretty overwhelming, taking all of our emotional resources, and then some.

Now we are at a different stage, as Daniel lives in a group home and staff there does a great deal of the day to day work with him. When we were planning this panel discussion, we chose the order based on our children’s ages. As the parent of the oldest child in this group — Daniel is 32 — and more importantly, as the oldest parent on the panel, I want to talk about something that is a huge concern for parents of children with special needs: what will happen to our kids when we are no longer around to watch out for them. We are very fortunate in that we have found a group home that provides excellent care, but Daniel is the only Jewish resident of the six in his group home, and one of only a handful of Jewish residents in the RSI system. Right now, my husband and I can make sure Daniel maintains his Jewish identity; he celebrates the holidays with us and we take him to Family Services when we can. But we are not going to be around forever.

When Daniel went up on the Bimah to open the ark for the first time as part of the Inclusion Committee’s efforts, people were very nice to him, congratulating him on how well he did, and chatting with him during the Oneg. That is the kind of interaction that we are seeking for Daniel, whether or not he has a role in a service. Daniel is warm and friendly, and loves being around people. If you see him, please say hi and introduce yourself and others who are with you. (You can offer to shake hands with him, but that is still a work in progress, so you might get a high five instead.) If just 10 people each spent a minute chatting with Daniel at an Oneg, he would have a great time. And knowing that Daniel is engaged makes it possible for me and my husband to visit with other adults, rather than feeling like we need to be with Daniel every minute. Seeing Daniel fully included in Judea now would give us confidence that he will continue to feel part of our congregation in the future.

I want to end by expressing my appreciation to Judea Reform – the Rabbis, staff, lay leaders, and the congregation more generally — for being so receptive to our Committee’s efforts in the last couple of years to make sure children and young adults with special needs are included in temple activities. It has meant a great deal to our families.

Thank you.