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April 14, 2011

For the Child Who Knows Not How to Ask

http://www.jewishjournal.com/blog/item/for_the_child_who_knows_not_how_to_ask_20110414/

Over the Purim weekend, a Shabbaton for Jewish adults with disabilities sponsored by JFS/Chaverim was held at AJU/Brandeis Bardin camp, and there was a late Saturday afternoon session called “Ask the Rabbi”. Questions zinged in from every corner of the room: Why can’t we eat meat with milk? Why do the Jewish holidays move around the calendar so much? Why do we sit shiva after someone dies?

Rabbi Deborah Graetz Goldman patiently answered each question quickly and to the point, but the session ended before everyone could get in his or her questions.

These Jewish adults with special needs had clearly been encouraged to ask questions, even if not afforded much formal Jewish education. In asking their questions, they were connecting themselves to traditional Jewish learning. As Barry W. Holtz, author of Back to the Sources: Reading the Class Jewish Texts writes : “In the world of the yeshiva, Jewish learning is carried on in a loud, hectic hall called the bet midrash where students sit in pairs or threesomes, reading and discussing out loud, back and forth. The atmosphere is nothing like the silent library we are accustomed to. Reading in the yeshiva is conducted in a room with a constant, incessant din; it is as much talk as it is reading. In fact, the two activities of reading and discussion are virtually indistinguishable.”

The older teenagers and adults attending this amazing Shabbaton were by and large, a very verbal group. But how can we include our children and teens in our upcoming seders when they are literally the “Fourth Son” mentioned in the Haggadah “who does not even know who to ask a question”?

During the first Passover after our son Danny was diagnosed at 13 months with cerebral palsy and development delays, hearing that description of the fourth son was very painful. Would Danny ever understand the meaning of the Exodus from Egypt? And even more importantly, would he ever be able to ask us any questions?

When Danny was young, we used a picture system to help him his express his needs and ideas, and so at mealtime, he would for example, point to the picture of the juice or the Oreo cookie. As Passover approached, we would pull out a photo of matzah and try to convince Danny that this would be a tasty alternative to those Oreo cookies (not!).

Although he wasn’t able to attend Jewish nursery school, he did go to the Shaare Tikvah once a week Sunday morning program at Valley Beth Shalom, and they always held a lively and tuneful-filled model seder, complete with a creative new story told by Rabbi Eddie Feinstein and music with Cantor Hershel Fox.

In addition, we have a number of Israeli children’s videos at home featuring the late Israeli singer Uzi Chitman, and one of those videos features all the key songs from the seder. If Danny finds a movie he likes, he will watch it over and over, and over again, and gradually absorb every syllable, every nuance.

At the actual seder, he would sit for awhile with the nursery school Haggadah that his big sister had made, and play with the various plastic toys and items that came with the “Ten Plagues” bag ( a great addition for any seder with children), and wait to hear his favorite songs. When he got bored, he would leave the table and play with toys.

Over the years, we began to invite other families raising children with special needs over to our home on the second night, and the evenings were half-seder, half-support group with the siblings having an extra good time together. The kids with special needs wandered in and out of the dining room, and everyone contributed based on their own abilities, such as the kids who are non-verbal autistics using their letter boards to make comments.

Two years ago, under the auspices of Hamercaz , the one-stop resource for Jewish families with special needs children funded by The Jewish Federation and staffed by JFS, we held a sensory-sensitive catered dinner at Beth Am for special needs families on the 2nd night, using a picture board to depict the various steps of the seder, and a soft, matted area with quiet toys off to the side for kids who needed a break. One of Danny’s friends, Ido Kedar, had pre-written a beautiful and thoughtful piece on what freedom meant to him in relationship with autism (see his blog at http://idoinautismland.blogspot.com/). Our song leader was teenager Quinn Lohmann, a friend from the Vista Inspire Program.

The kids were remarkably engaged in the service portion of the evening, but more than one melt-down took place as soon as the chopped liver was served.

Last year we celebrated just one night of Passover in Israel in a rented apartment in the Givat Mordecai neighborhood of Jerusalem.  I had schlepped along a Passover cookbook, a “Mr Matzo” craft project from the Zimmer Museum years gone by, the nursery school Haggadah and the plastic toy plagues. We ended our seder a little earlier than many of our neighbors, because we could hear their songs and prayers wafting in through the windows, mostly in Hebrew, but in other languages too. The next night, Danny went over to the pile of Passover paraphernalia and said one word with a questioning tone: “Again?”.

 

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