It Is Our Time To Act On Behalf Of Adults With Special Needs
The room is filled with a combination of laughter and bickering as food is passed or occasionally thrown across the table. He just sits as his face gleams with a smile. After a long day, he can enjoy his siblings, who came home from their day at school. Although he does not have many other friends or people to talk to throughout the day, he is completely content. For him, there is nothing more meaningful than just being with his siblings, the people who know him and love him the most. He imagines that they will be there forever.
They grin and watch as their children interact with each other. While they know they will have a tough night ahead, filled with homework assistance and looking after a child with special needs, they also know they will be given support. Volunteers from a community organization come one evening a week and occasionally on a Shabbat afternoon to spend time with their child. The week ahead offers a school program for six–seven hours daily, structured with speech, occupational and physical therapy, learning and trips. Life is certainly not easy, but it is manageable and somewhat predictable because of the community infrastructure. Although life is stressful, the parents are grateful that there are resources and support for children with special needs in the community.
Fast-forward ten years.
The room is filled with a combination of silence and uncertainty as the bowl of soup is gently placed by his mother on his plate. After a long day, he gazes at the empty chairs his siblings used to occupy every night. Their absence is certainly justified — one is in college and about to get married, the other is spending a gap year in Israel and the third is at a basketball practice — but it is lonelier than before. For him, the most meaningful thing would be if the clock was turned back to the good old days — when his day was capped off by hugs and warmth from the people in the world that meant the most to him. He imagined they would be there forever.
They watch with a meager smile as their child eats his soup alone. While they no longer have nights filled with homework and bedtimes, they know they will not have any support for the rest of the night. The now adult child with special needs will spend the evening alone with his parents, with one often busy with meetings, professional obligations, weddings and other events. While many programs were helpful when he was younger, their child, now 21, has aged out of the district program and will have difficulty finding a similar one going forward.
Community support and infrastructure are suddenly part of the past, leaving the child with very few options. Many day programs exist, but some are better and offer more than others. The stronger programs have long waiting lists, some months or even years long. The families are forced to rely on individuals from agencies, some of whom are not consistently reliable and cancel sessions several times a week. While other kids go off to Israel and college, their son is left without any plan or program. They watch as their peers are liberated from the responsibilities of child-rearing, while they are still physically exhausted and worried about the future of their child.
Starting to plan several years in advance, it is still most difficult to line up both day programming and living arrangements for the young adult with special needs. While people recommend group homes in the county (some of which are attached to a day program), they cannot imagine their child not wearing tefillin every day. They cannot envision the empty seat in shul on Shabbat morning. Who knows what food their child will be served? Will it even be kosher?
Parents of adults with special needs are aging and exhausted from being not only fathers and mothers but teachers, therapists, medical caregivers and advocates as well. They need a break and want their son to grow but are afraid to lose control and upend everything the child has ever known — his Jewish family values, observance, customs and traditions.
The Jewish community needs observant group homes for adults with special needs. As a lifelong sibling of someone with special needs, I have an insider perspective of how this situation can affect a family. However, I think that the establishment of Jewish group homes for adults with special needs is the long-term solution. While there are some options, such as programs like Makor and HASC homes, these options aren’t suitable for everyone. While I witnessed, benefited from and appreciated the outside help when my sibling was younger, that support no longer exists.
Many of us volunteered in high school and now in college in Friendship Circle or Yachad volunteers, but most of us “outgrow” the opportunity as our lives progress. We should strive to seek out those in our communities who may be invisible and make sure they are not being overlooked.
We may just need to start small. For example, we can begin by discussing this important topic with friends or relatives that may be less aware. Another idea would be to simply offer to take out an adult with special needs for a few hours over the weekend. While one may view it is an insignificant part of the day, it would do wonders for the family. At this point, the raising of awareness can help facilitate something bigger. Ultimately, everyone taking small actions now can lead to bigger and better solutions later.
The room is filled with a combination of laughter and bickering as food is passed or occasionally thrown across the table. He just sits as his face gleams with a smile. After a long day, he is just able to enjoy the people he got to spend his day with. Although he no longer sees his parents or siblings every second, he still gets to see them often. For him, there is nothing more meaningful than the visits from his siblings and parents, the people who know him and love him the most. He thinks of them when he wraps his tefillin every morning. He smiles when he hears he will be sitting with his father in shul on shabbos. He knows they will love him forever. But he also forms new relationships within his community, with adults who take time to visit on Shabbat and who notice him in shul.
They watch with a grin as they get ready for their first Shabbat nap they have taken in over thirty years. While they know they have a visit to look forward to later in the week, they are reaping the benefits of being empty nesters after being given the support they needed. Life is certainly different, but it is more manageable because the community infrastructure is there. They worry just a bit less about what will happen when they are no longer there to take care of their child. Baruch Hashem, they realize that there is a lot of support for children and adults with special needs of all ages in the community.
