Monday, September 9, 2013

Places of worship for kids with special needs: And then, a mini miracle


Finding places of worship that include kids with special needs isn't easy, at least in our area. Some of you might recall my rant on the topic a year ago. After that, I got a bunch of amazing emails from people around the country—rabbis, priests and people who run organizations and programs specializing in religious inclusion such as Matan and Gateways (in Boston) for Jewish programs and Interfaith Initiative of the American Association of People with Disabilities (AAPD) and Congregational Accessibility Network for all faiths.

One particularly encouraging message came from the Reverend Bill Gaventa, director of Community and Congregational Supports at the Elizabeth M. Boggs Center on Developmental Disabilities at UMDNG/Robert Wood Johnson Medical School in New Jersey. He said, "There are still far too many conregations unsure of what to do or not willing but also, gratefully, a growing explosion of places and resources who are getting really serious about inclusive ministries and faith supports."

Half of our battle isn't just finding a congregation that has programs for kids with special needs—it's getting Max comfortable there. I needed divine intervention but I got the next best thing: a conversation with Ginny Thornburgh, Director of the AAPD's Interfaith Initiative. She's mom to a young man with disability, and all sorts of inspiring.

Ginny had a bunch of good suggestions when we spoke on the phone: Visit the temple when it's empty so Max can experience it on his terms. Take photographs and compile them into a book, both so we could discuss it with Max at home and bring it to the temple to help calm him. See if we could get a buddy assigned to him. She also pointed out, "All kids are antsy at services, whether there's a disability or not."

I thought of her words this weekend, as I watched Sabrina and her friends trotting around the synagogue we were in for Rosh Hashanah, the Jewish New Year. They'd bailed on the children's service, and didn't seem particularly flooded with piety. Max, meanwhile, had fled the premises; he took a couple of steps in the door, then dashed out with Dave close behind him. I hadn't seen them for an hour. I was bummed. 

This was a new temple we found at the end of last fall. It's more religious than the usual conservative ones we've attended, but Dave and I were game to try it for Max. Sabrina had friends who belonged there, so she was content. I had high hopes: It's in an actual house the congregation bought, part of which is a dedicated center for services, celebrations and activities. The rabbi and his wife could not have been more friendly and welcoming. I hoped Max would feel more at ease in this literal house of worship then in the sprawling buildings we'd tried before. 

Not so much. On our first visit, Max wailed. We got him down to the basement playroom for a bit, but then he wanted to leave. Throughout the year, we couldn't convince him to go for services or events. I took some photos of rooms there. We'd talk about it. He kept telling me "Nooooo." I figured I'd leave the subject alone for a few months, then try again. I never was able to come up with a buddy for him. I had this ongoing fantasy about getting the rabbi to do a Cars 2 themed service.

I heard a door open, and looked up from the prayer book. It was Dave and Max, who had this huge grin on his face. He walked into the sanctuary (i.e., someone's former living room) wearing his Cars 2 backpack. Then he wanted to go to check out the kitchen.

This is when I discovered that a way to a kid's (spiritual) heart is through his stomach. Max made himself at home at the counter. He asked for a piece of honey cake, and the attendant gave it to him. He downed some orange juice. He ate another piece of honey cake as we sat and talked about how you eat honey on the holiday so you can have a sweet New Year.

We wandered around the rooms for a while. Next, we headed to the basement playroom, where Max prepared some lunch for me and Dave at the play sink/stove (a head of purple lettuce). He and another boy played with some trains on the tracks. We went back up and walked around some more.

For once, Max left a temple content. For once, I didn't walk out thinking it was an end—it felt like a start. 

24 comments:

  1. Glad you finally found a place of worship suitable for Max I'm very fortunate most churches here in South Africa are accessible.

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  2. so glad to hear this, ellen.

    i assume the shul is orthodox -- other jewish denominations could really learn something from the way they do inclusiveness.

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    1. Not all Orthodox shuls are super inclusive. Like anything else, it depends on the actual people involved. I'm guessing I know which congregation is being described, and I've only heard good things about it.

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    2. Yes, orthodox! And in my experience, too, it's depended on the congregation itself although Chabad in general is absolutely amazing with inclusion.

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  3. It is so important for a family to have a place of worship. So glad you found one that felt like a start. Keep at it! Routine is important, for sure. And great ideas for all of us to make our kiddos feel more comfortable!

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  4. Shana tova uMetuka to all of you!

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  5. So glad to read that Max was content at synagogue. I hope your family has a sweet new year - Shana Tova from Boston.

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  6. Shana tova! I've been going to Reconstructionist services at an incredibly open and welcoming synagogue for a few years (I was brought up Conservative, so it's been different - but not bad different). This year I am planning on taking my daughter (who is 6 and has CP) (oh and my husband, who is not Jewish, will be there too ;) )to Kol Nidre - Kol Nidre of all things! But the temple is billing it as inclusive and family-friendly, neighbors of ours (my kid adores them) are doing some part of the service, and, well, I think it's time to try. Wish us luck! And there's also a Tot Shabbat service in a few weeks that I think we'll try as well (does your new temple do kid services? mine's a weensy bit older than the suggested age range for the service, but I think with kids around and a more laid-back atmosphere, she might actually...sit for a second? not cry?).

    Bonus: When I went to my first service at this particular temple, I mentioned my kid to the rabbi. He smiled and told me how he worked with children with disabilities when he did Teach for America. Excellent!

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    1. Kol Nidre: that's BOLD! Good luck, please come back and tell how it went! Yes, this congregation has a children's service.

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  7. Rodeph Sholom in NYC has a wonderful service on holidays for kids with special needs. We couldn't make it to the Rosh Hashana service last week but hope to go to the next one.
    http://rodephsholom.org/pray/special-needs/

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    1. I've heard about it! Not so ideal for Max—anyplace largish freaks him out. Unless it's Disney World.

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    2. i am imagining services done by disney characters. not very orthodox, but if you need a laugh try imagining different characters doing kol nidrei.
      may i wish you a yr of continued growth, health and laughs

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  8. We (religious communities) have a long way to go, but fortunately there are some entites making helpful and positive strides. Great way for Max, you, hubby & sis to start the new year.

    My 13 yo will become Bat Mitzvah in 4 weeks. Pretty sure we'll be calling her back in to the sanctuary much of the time. She's prepped 8 prayers for Friday, and 10 or so for Saturday + 3 lines of Parsha (Noah).

    When the time comes, pretty sure I'm going to want to run out of the room, too. Eek. Terrified.

    Shana Tova. May the year ahead be filled with more milestone moments.

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    1. Mazel tov! And a sweet new year to you, too.

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  9. Everyone should worship regardless of their needs.

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  10. Shana Tova! My son has Autism and we go to Chabad for the same reason. They have been awesome. We started with sunday school and I would stay with the class, then they included a high school volunteer and I can sit in the lobby. After a couple years I can now even leave the building during the sunday school :-). They always have high school kids volunteer and Ben loves the attention and love that he receives. He knows Hebrew letters and holidays. We are two years away from Bar Mitzvah and I know he (with a buddy) will be able to do it. I really started to appreciate Chabad sometime ago, when a local Jewish camp would not accomodate my desire to send Ben to day camp. Chabad accepted us with open arms and arranged for an aid!!

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  11. That's really great Ellen! Hope it does turn out to be a new beginning to a very long happy and content spiritual experience!

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Thanks for sharing!



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