Words Worth Repeating
Keynote Speech for Jewish Family Service of Central NJ
Delivered by Marcia Wiener on June 7, 2015
I’m sure you’ve all heard the expression that “it takes a village to raise a child.” And no doubt many of us agree. But as the parent of a child with special needs, sometimes it feels like you need a town, a small city, and all the reinforcements you can get to keep it together. Families that find themselves in a situation where they don’t feel they have the right resources, or they don’t feel comfortable in their community, can frequently feel judged and end up being isolated. So where can you go to find that place where you belong?
My name is Marcia Wiener, and I am the mother in a Scotch Plains-based Jewish family. My husband Steve and I are very active in the Jewish community and in our synagogue, and have two sons ages 15 and 12, Joshua and Jonathan. Our younger son Jonathan was diagnosed with autism at 20 months, and one of our big concerns in regards to his diagnosis was how we could provide a strong Jewish foundation for him in a way he could understand.
We are members of the conservative synagogue Congregation Beth Israel in Scotch Plains. When it was time to send Jon to Hebrew school in 2009, it was apparent that although our temple had wonderful intentions to provide a Jewish education for him, the traditional religious school model was not going to meet his needs.
For many of us, we plan (and agonize) over pulling together a Bar or Bat mitzvah – from the prayers to the party. We complain about Hebrew school if our kids are on travel teams and the coach gives us a hard time about conflicts with practice. We get excited and plan ahead on how our children can take advantage of Birthright, of study in Israel, of going on USY on Wheels, or attending Jewish sleepaway camp.
With Jonathan, we struggled with being able to have him sit for any length of time in shul for a service, much less Hebrew school. Camp wasn’t an option because there seemed to be very limited programs available for special needs placement – at least where we felt comfortable that he would enjoy it. Being able to take a trip to Israel, even if he was older? Who knew if these types of programs even existed? And what about becoming a Bar Mitzvah? If we couldn’t even get him to sit in services, how could this ever happen? I always felt I was on an island… that I had no choice but to find my own answers because there was no place I could go – or no one to ask that could guide us.
This is really at the heart of what a lot of Jewish parents who have children with special needs experience; we don’t have the tools to help our child build a strong Jewish foundation and be part of the Jewish community when they don’t really have the skills to identify with what that means. Concepts like tikkun olam, Zionism, tzedakah, the meanings behind Jewish holiday traditions – Purim, Pesach, Rosh Hashanah – these are all very abstract and finding the best way to make these real – and relevant for our kids – is a huge challenge. And if a child’s social skills are limited, they may not know how to relate well to other kids in order to develop those friendships that help make them feel like they are part of the community. As wonderful, special, and unique as each one of our kids may be, they’re still different from others and they just don’t quite fit.
Then we heard about the Ma’ayan program at Temple Emanu-El in Westfield and this seemed liked a perfect opportunity for Jonathan to have a religious school experience with an integrated learning approach. Jon studies Hebrew with mainstream peers, participates in various programs with the Ma’ayan class, and participates in music, tefilah, art, and other specials in an integrated setting. This type of structure is ideal – our children learn from typical peers, and typical peers learn the importance of empathy and kindness to everyone. What could be more Judaically foundational than that?
What I didn’t know at the time was that the Ma’ayan program was funded in part through Jewish Federation of Greater MetroWest NJ, and that this was only one program in a much larger network of resources. I had the opportunity to meet Rebecca Wanatick, Community Coordinator for Greater MetroWest ABLE, who has been a tremendous source of information and insight, and is always ready to help.
ABLE stands for Access, Belonging, and Life Enrichment for People and Families with Special Needs, and represents the network of community leaders and professionals that work together to advocate and support families just like mine. Their vision is to support a community that is “made whole through the active and meaningful participation of all of its members, with opportunities for access to every aspect of Jewish life.” This whole concept of inclusiveness really resonated with what I wanted for my family. And I didn’t realize the number of different links – other programs, that were available to us, and not just as a special needs family, but as a Jewish family in the community.
In addition to the Ma’ayan program Jonathan enjoys, he also has participated in a special needs youth group, Kids Connect. I have started attending a mom’s support group at the JCC in Scotch Plains, which is just getting up and running. Thanks to the great resources on special needs camp programs through the Federation-supported One Happy Camper program, which provides camp scholarships to families who want to send their children to Jewish summer camp, Jon’s going to attend NJY Camp this summer for the first time, with equal parts of excitement and trepidation. And my older son Josh is a veteran counselor at the JCC’s Camp Yachad, and in partnership with JNF, will be attending the Alexander Muss High School program in Israel to finish out his junior year. But despite all these wonderful programs, the thing that means the most to us is seeing our synagogues and our communities truly start to embrace the power of being inclusive, Jewishly.
Update – Fast Forward to March 2016
We’ve had some amazing experiences since I originally penned these thoughts, but I wanted to share one last thing with you. This past November, Jonathan turned 13. Certainly we had planned for him to have a Bar Mitzvah, and when he was younger, we thought it would be just family and a few close friends to celebrate the day. Perhaps he’d be able to lead a few prayers and have an aliyah. But nothing could have prepared us for what happened.
Jonathan led the bulk of the service, including every prayer traditionally led by the Bar Mitzvah. He recited his aliyah, read a portion from the Torah, and proceeded to chant a 12-minute haftarah that was absolutely flawless and had the entire congregation of almost 250 people buzzing. Jonathan even did his favorite rendition of “Ein Keloheinu” with his own special dance, and his high kicks on the bima during “Siman Tov, Mazal Tov” while the entire congregation clapped and cheered is something I will never forget. There were more ear-to-ear grins than you could count and a significant number of happy tears. The overwhelming comments my husband and I heard from virtually everyone was how special and meaningful Jonathan’s Bar Mitzvah was. But what truly stood out to me was that palpable feeling of pride from friends, family, caregivers, therapists, congregants, clergy – because everyone there knew they were an integral part of Jonathan’s personal “village” – that inclusive environment where anyone can feel that they belong – with Judaism as the foundation.
The most important thing for us to know is that it doesn’t end here. Just several weeks ago, Jonathan read Torah again during Shabbat, is due to read again in May, and is planning to read from the Megillah during the Purim service. He loves attending Hebrew school at both the Ma’ayan program and Congregation Beth Israel and is very interested in attending post-B’nai Mitzvah programs if they are available. This is something we could only have imagined just a handful of years ago, and would not have been possible without the support of Jewish Federation and everyone in the community who makes it a priority to build a community of inclusiveness.