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Special Kids, Special Seders

March 14, 2013 By:
Melissa Jacobs, Special Sections Feature
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Passover is Max Newman’s favorite holiday. His father isn’t quite sure why, and that’s OK with him — there are many things that Eric Newman doesn’t understand about his son. Diagnosed at age 2 with autism, Max is now 19. “Although he has a lot of life skills, Max is not high-functioning,” his father explains, “but he is not low-functioning, either. Raising Max has meant figuring out what he can and can’t do, what he excels at and what he doesn’t.” 

One thing Max excels at is Judaism. He was Bar Mitzvahed and reads Hebrew. He not only knows the seder’s four questions; he wrote his family’s Haggadah. Despite those accomplishments, Max definitely has his limitations. He is part of a community within a community of special needs Jews. 

For the past six years, the Newmans — Max, his brother and their parents — have attended a special needs seder organized by Achieving Community Hopes and Dreams (ACHaD) at the Katz JCC in Cherry Hill. Approximately 125 people attend the event each year, and the seder is open to everyone in the Delaware Valley for a $12 per person fee. Supported by the Jack and Florence Volk Passover Project Endowment Fund and The Jewish Community Foundation, Inc. of the Jewish Federation of Southern New Jersey, the ACHaD seder was created 13 years ago by its director, Eileen Elias. 

“ACHaD has programs for special needs people, from kids to the elderly, who have a variety of physical, developmental, neurological and learning challenges,” Elias explains. “Some people live independently, but many live in residential programs or group homes in South Jersey. Their families may live elsewhere, like Central or North Jersey or at the shore, but they come — parents and siblings, some travelling long distances — to the ACHaD seder to share the holiday with their loved ones.”

While some also go to their families’ home seders, doing so can be difficult for the special needs person. Haggadot may not present the Passover story, prayers and songs in ways that special needs people can process. And, Elias explains, their disabilities may include behavior that is disruptive during the seder. Some people can have sudden outbursts, speech difficulties, an inability to sit still and other challenges. At the ACHaD seder, all of that behavior is not just accepted, but accommodated. “People on the autism spectrum often need extra stimulation, so they may get up during the seder and walk around the room,” Elias explains. “Other people need more physical movement, so there is an area that they can go to and just spin in circles. If they have outbursts or there is shouting, it is OK. Parents don’t have to apologize for or try to control a child who is noisy or may shout every once in a while. That takes a lot of pressure off of the parent and the child. No one is expecting them to be ‘normal’ or looking at them strangely because they are not. No one will get mad because they are ruining the seder, because they aren’t. This is their seder.” 

Behavior is not the only thing that differentiates ACHaD’s seder from others. Presenting the story of Passover is also done differently. “It is a full seder, not a kid’s seder,” Elias explains. “However, we do abbreviate some of the sections or reword them to make them easier to understand. We use a lot of music, because that keeps people engaged. We also made the songs different and put them to tunes like ‘My Darling Clementine,’ ‘This Old Man’ and ‘Show Business’ that everyone is familiar with from everyday life.”

Participants get their own seder plates so that the items are directly in front of them. Everyone reads a part, in English or Hebrew depending on their ability. And then there is the Haggadah, which Elias and her staff created in 2008. In it, the story is told in storyboard format using both pictures and text.

“Many kids with autism and other learning disabilities are visual learners and have trouble with auditory processing,” explains Gabrielle Kaplan-Mayer, program director of special needs and family engagement for Jewish Learning Venture. “They understand language, but the time from which words are spoken to when they understand them is longer. Pictures are a way to compensate for that and help them comprehend language.”

Kaplan-Mayer is the mother of a 10-year old boy with autism; her family attends a special needs seder held at Mishkan Shalom in Manayunk. “We make it as multisensory as possible and give everyone plenty of opportunities to get up and move around,” she says. “We have puzzles on the table to engage the kids. Everyone has a role, in English or in Hebrew, and is expected to participate and is congratulated for their contribution.” 

That seder is part of the synagogue’s Celebrations, a monthly program that has special needs-oriented activities for other Jewish holidays, including Shabbat. Celebrations is open to all families in the Philadelphia area — another example of a community within the community. 

As is ALUT, the Israeli Society for Autistic Children. Founded in 1974, ALUT publishes its own special needs Haggadah. Available in Hebrew but not English, the Haggadah can be ordered online. (See resources sidebar.) Gateways, Boston’s central agency for Jewish special education, created a special needs Haggadah that can be downloaded for free from its website. That is what Mishkan Shalom uses, and Kaplan-Mayer uses it at the seder she has in her home. 

Another important part of the seder: food. Here, too, special needs families face challenges. Many people on the autism spectrum have gluten intolerances that manifest in what can be severe digestive problems. There is gluten-free matzah, but it is not kosher for Passover (many grains used in gluten-free foods — rye, spelt, oats — are not Pesadichah). The Orthodox Union has made a medical exception for people with gluten intolerances and ruled that oat matzah is halachic. But finding it isn’t easy; families have to special order it. “The kind we get is $25 per box,” Kaplan-Meyer says. “So that is the ‘special’ matzah that only my son can eat. Special matzah for a special kid for a special Passover.”

Eric Newman groans when thinking about finding gluten-free Pesadichah products. But he has had fun with other aspects of his family’s seder. Newman added interactive elements, like using Ping-Pong balls for hail. “But we don’t do that for Max because he is a Passover expert and doesn’t need help with the seder,” he says. “We do that for the little kids who attend and our guests who are not Jewish. We want them to understand the story and the meaning of Passover. They do — because Max explains it to them.”

Resources: Special Needs Seders

ACHaD

www.katzjcc.org/special-needs.php

Mishkan Shalom’s Celebrations

mishkan.org/celebrations

Gateways

www.jgateways.org/Resources/Passover

ALUT, the Israeli Society for Autistic Children

alutfriends.org/haggadah.html

Melissa Jacobs is the senior editor of Inside magazine. This article originally appeared in "Passover Palate," a jewish Exponent supplement.

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