Susan's Blog

Wednesday, September 2, 2009

Raising the Bar (Mitzvah) For Autistic Kids


A long time ago, we gave Nat a bar mitzvah. This was before special organizations like Gateways, or other special needs religious school curricula were as common as they are now. I got together with a few other parents back when we belonged to a synagogue and we formed a Special Needs Task Force, to get the temple community to understand that they were inadvertently leaving out an important minority of the congregation. They needed to make aides available. One of Nat’s teachers became an aide in the Sunday School class, and Nat was fully included that year.

It is difficult to put your finger on what our kids get out of Sunday School or religion in general; that is true of most kids. These days I don’t get much out of mine. I identify with Judaism as a faith and I definitely believe in God and good; but I don’t want to be part of a congregation. I really don’t like the way I feel in religious services. Now and then I’ll go with my mom, and every once in a while I’ll feel something special and moving, especially when speaking or singing in Hebrew. The ancient Hebrew prayers feel real to me.

I think Nat feels the same way, with one big difference: he loves being in temple, much the way he loves being in any kind of group. I often don’t feel good in groups. It’s funny, that stereotype of autistic people disliking crowds, noise, others’ company: you just can’t lump together “autistics” any more than you can lump together “Jews” or “Republicans,” for example. Nat loves groups, he loves noise, he loves parties.

At temple, however, he also tries to sing along and he definitely knows many of the shorter Hebrew prayers. I never did try to teach him Hebrew; that seemed too arduous. But he picks up on things, especially music, so he really enjoyed Sunday School.

The problem was, the year he was to be bar mitzvah’ed, he was left out of the choosing of the dates. The choosing of the dates of bar mitzvahs is important; your date dictates what your Torah portion will be, and what the theme of your Haftorah will be. But every Saturday was chosen already. They forgot Nat. All that was left for Nat was a mid-week bar mitzvah.

It broke my heart. But, like most things that piss me off, it spurred me to action. I planned a bar mitzvah without a temple, without a congregation, and it turned out beautiful. Nat was just perfect — give or take some giggles.

Soon after the bar mitzvah, my book came out, and I gave a talk somewhere, and met Cathy Boyle. Cathy had just developed a Catholic Sunday School curriculum for autistic people. She and I were on the same page (different Bible). Today I got word that she has a second part of her curriculum, and that it is available here.

No child should have to be without a religious background if they have that side to them, and if it is important to the family. People like Cathy (and the folks at Gateways) make it that much easier for families to go about their business being just families. L’hitrot.

7 comments

Susan, I read your linked article about Nat's bar mitzvah; it brought tears to my eyes.

Cathy Boyle

— added by ccampboyle on Wednesday, September 2, 2009 at 10:56 pm

Susan,

I read your linked article about Nat's bar mitzvah and it brought tears to my eyes.

Cathy

— added by ccampboyle on Wednesday, September 2, 2009 at 10:57 pm

My views on religion = yours. Mine have been baptised b/c Dh wanted it done and I (agnostic) had no strong feelings either way. They are Anglican (all 3 of them), I am Mennonite…. Maybe if we went to a larger church, not one that should close…. would it make a difference??

— added by farmwifetwo on Thursday, September 3, 2009 at 8:11 am

Oh I find our church so very hard for my daughter. I was raised Lutheran and attended church every Sunday of my life. It gave me a strong faith in God, in life, in being. I so wanted that for my daughter.

Our church is 'by the rules,' so when she attended confirmation classes and could not/would not drink the grape juice nor eat the confirmation wafer, well, they had a hard time with that.

I think, however, they had a harder time with me, who told them straight up that I am not sure Jesus or God cared if she actually ate the wafer or drank the grape juice, that God loved her just the same as He/She loves everyone else.

At least all my church-going gave me the backbone to stand up for my daughter, who at times is more Godly and loving than I find my own church.

— added by Penny on Thursday, September 3, 2009 at 7:28 pm

Susan- There is a wonderful B'nai Mitzvah program for kids with Autism in Los Angeles called "Nes Gadol." It was created by Elaine Hall from the Miracle Project (Autism the Musical chronicles one group creating a show during on of her workshops.)The program serves kids on throughout the Spectrum and uses theatre, music, art as well as Tefillot(prayer.) Each child has a B'nai Mitzvah that resonates for them, and is really about them. As it should be! Religious identity can be a powerful and sustaining part of any kids life, but it is especially true for kids with Special Needs.

— added by Anonymous on Saturday, September 5, 2009 at 9:58 am

I linked up to Cathy's page.(Born and raised, now a cultural catholic.)

It reminded me of when Ben was small, and we taught him the "Our Father", which wasn't hard to do because he was echolalic…he used to say, "Deliver us from eagles" instead of "Deliver us from evil"…sorry, just a walk down memory lane.

He's agnostic now. Little poop!

— added by r.b. on Saturday, September 5, 2009 at 10:31 am

Thank you for a great story. Your thought process about your son's bar mitzvah and how you overcame the related obstacles in a practical, well-thought out way was really refreshing.

— added by Cindy at TransitionMap on Tuesday, September 8, 2009 at 8:20 pm