Sunday, December 13, 2009

A Letter to the Editor

A local friend sent me a link to a recent article in the Jewish Week about the invisibility of being a certain kind of kid with special needs. It was hard not to want to react, both as a parent of a child with special needs and as a professional and exec at Shutaf. Even though my child's issues are more apparent, I understood immediately the frustration and sadness of the parents writing in to the paper. We want acceptance - for our kids and for ourselves. It's time that the great community really consider what that means. I don't know if my letter will make it so here it is for you to read and opine. 

Dear Jewish Week,
November's article 'Invisible Disability' Kids are being Left Out' struck a chord with me. My 12 year old son, Akiva, has a more visible disability - Down Syndrome and PDD - and yet, he is often just as invisible in community life. While he has many adult friends at Kehilat Mayanot in Jerusalem(where we regularly attend), and is welcomed when he arrives, he tends to remain by our side during Shabbat services. He's outgrown the children's service - he's too big to sit with the little ones - and we no longer have the patience to accompany him. Most kids don't know how to relate to him and he lacks the social skills to make appropriate overtures even though he loves contact with other children. 

When we lived in Brooklyn and attended the Kane Street Synagogue, we often wondered how we'd ever find a way to connect him with the other kids of the community. Once a child passes through the cute toddler stage (when all the teenage girls lavish attention), if they can't run with the pack they get left behind. If a kid has more moderate or 'invisible' issues, they suffer even more - they look like the others but can't cope with the typical kids social pace and demands. When we left Brooklyn and moved to Jerusalem, community life became even harder. At least in Brooklyn, everyone knew us and knew Akiva. Here, we were brand new and people weren't used to Akiva's noisy shul presence, consequently, we didn't feel welcome in every shul. 

Inclusion and acceptance are critical areas that need to be developed in every area of Jewish life - as an ethical, social and necessary Jewish value. Parents need to be educated and children taught to watch, care and include - with love and acceptance. 

Looking to answer my own child's needs, I co-founded a new camp and after school program in Jerusalem that teaches these important skills - Shutaf. At Shutaf, we've developed a unique new inclusion model that that teaches these important values in real time. We 'include' the typical kids, who are outnumbered by kids with special needs - all types, all disabilities, visible and invisible. Differences are not such a big deal when everyone is having fun together - when the program is carefully planned and the staff well-trained. By leveling the playing field in such a dramatic fashion at Shutaf, we teach with a gentle hand and make a difference in the lives of all the kids that participate. And our teen program offers opportunities for the older set to feel less marginalized by their differences. They train and work and earn, alongside their typical peers and life looks just a bit more brighter. 

It's not so impossible to create more programs like Shutaf in every community. Youth movement programs could be easily adapted to an inclusion model like Shutaf's. With proper parent support and education, barriers to such programs; fear, lack of awareness and experience, can be reduced and over time even eliminated. 

Parents of kids with special needs have special needs. We need extra attention and effort paid - we tend to feel isolated and alone in our lives, even if we have good friends and seem involved in community life. The toll of caring for our kids takes a huge amount out of us. Making such efforts will go along way to bringing us back from the margins, from the 'invisible' corners of the community. And remember this - the typical kid and teen who has a positive experience now with a child with special needs may be the one who will hire him/her in the future, who will have less fear and more awareness that we're really all created in the image of G-d. Tikkun Olam - something we all need. 
Thank you,
Beth Steinberg
Executive Director and Founder, Shutaf.
Shutaf. Community. Inclusion. Fun.

No comments: