Twice a year the Ramah Camping Network offers Tikvah Family Shabbaton for families with children with disabilities, cosponsored by Camp Ramah in New England and Reshet Ramah: Alumni and Community Engagement Network.
Last weekend, my family and I drove up from our home in Rockland County, New York to Palmer, Massachusetts to participate in Ramah New England’s Fall 2014 Tikvah Family Shabbaton (Sabbath weekend). As parents, we are constantly thinking about what we can do to help R, our 7 year old, who has a diagnosis on the autism spectrum, and B, our 4 year old, a neurotypical preschooler. Although we know that parental self-care is important, our daily routines interfere and what we can do to help ourselves is often an afterthought.
The Shabbaton was completely different. The way in which our family generally functioned on a day to day basis was turned upside down for a precious 48 hours.
With every activity, service and meal, the amazing and capable tzevet (staff) who interacted with our family was warm, caring and supportive of all our needs – children and parents alike. I found that I was not worrying about R – and more importantly, not waiting for the proverbial “other shoe” to drop. I attended services, I had an aliyah (called to the Torah), I participated in interesting lectures. I had time and space to socialize with other parents of children with disabilities. We shared our experiences, empathized with one another and also did a lot of laughing. We came from several different states, but we spoke the same language.
As a parent, particularly a parent of a child with disabilities, there is immeasurable value in having a weekend free of judgment. And that is exactly what we got at the Shabbaton. The parents and tzevet at the Shabbaton understood our family in a way that most people at home cannot comprehend. When R had a meltdown, I did not worry that parents, children and staff were staring. I did not panic. I did not apologize to everyone who had witnessed it. But more than that – I did not feel I had to.
At the end of the Shabbaton, I was struggling to put into words the way the weekend made me feel. I started to tear up saying goodbye to Amanda, the counselor assigned to our family for the weekend. I tried to explain the difference she and her friends had made for our family that weekend, and how much it meant to find a community of young people who are eager to include children with disabilities in the Ramah community in a meaningful way.
Still, it was not until we were driving away from camp, with R crying in the backseat, that the value of the weekend fully came through. As a child in an inclusion setting both in his Jewish day school and his summers at Camp Ramah Nyack, R is just beginning to understand that he has some difficulties that his peers do not. As R cried, he explained that being at camp was “safe”, “comfortable” and “easier” than what he was going back to.
This made me cry again, too. I really “got” what he meant. This was how I was feeling, too. When we decided to come to the Shabbaton, it was something we were doing for R. Little did I know that the Shabbaton would be just as valuable for me as it was for him.
Originally posted on Zeh Lezeh, the blog of the Ruderman Family Foundation, this article was written by Benay Josselson, a regular contributor to the Matan blog for our monthly series called “A Parent’s Perspective”. Benay is an attorney who lives in New City, New York with her husband and two children.