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Coping with an Autistic Brother: A Teenager’s Take

Siblings of People with Special Needs: Next Steps in Disability Awareness Outreach

Or Ami spends significant time and energy embracing and supporting families with children with special needs. We are proactively welcoming, because our tradition teaches us that we all were created b’tzelem Elohim, in God’s image.

Taking our lead from the Union for Reform Judaism’s Disability Awareness initiatives, we have come to understand that “with special needs children, there are two values being played out, simultaneously. Working with one child, Brandon Kaplan, for instance, we saw that Brandon is a kid like any other kid created in the image of God, worthy of love. But Brandon is also a special kid and there is an honor and joy to the congregation that he participates to the fullness of his abilities. So he’s normal and special, but here’s the secret: so is every other kid.”

Often though we focus on the needs of the person with special needs, or on the struggles of being his/her parent. We welcome special needs children into our education programs and kvell as they become B’nai Mitzvah. Our Or Ami Center for Jewish Parenting sponsors a support group for people with special needs.

Now comes the New York Times reporting on NPR’s poignant account of the experiences of the sister of a boy with autism. The article, and story, Coping with an Autistic Brother: A Teenager’s Take, is powerful listening. It reminds us that the constellation of those touched by disabilities is far wider than we often consider. It goads us to explore more deeply how we reach out – really reach out – to all those affected.

The New York Times Well blog reviews the story:

The piece focuses on 15-year-old Marissa Skillings, whose 11-year-old brother Andrew has Asperger’s syndrome, a form of autism. Marissa talks about the challenges of living with a brother on the autism spectrum.

He talks nonstop; talking and talking and talking. He’ll tell anybody information about any animal whether they want to hear it or not. People can tell Andrew has a disability….When he gets nervous he moves his hands back and forth.

Having a brother with autism takes a toll on Marissa’s relationship with her parents. Her brother often interrupts and makes it difficult for her to receive attention. Sometimes she stays out as late as her curfew allows so she can avoid time at home.

I come home and deal with it when I have to, and when I don’t have to deal with it, I make sure I don’t.

She and her brother tell the story of the time a neighborhood boy picked on Andrew. She chased the bully down the street, cornered the boy and slapped him. I don’t hate my brother. I’d kill for him. But I could kill him too.

Read/hear the NPR story (and see pictures of Marissa and Andrew) here.

I was astounded after listening to this story. With all the good work we do, here is another important area in our outreach to families of people with special needs that we haven’t really focused on yet. Although our Jewish tradition teaches “lo alecha ham’lacha ligmor – it is not up to us to complete the task,” we do need to explore each challenge as we become aware of it. So this story has led me to ponder three questions (perhaps you can help me learn and respond):

  1. What would congregational support of the siblings of people with special needs look like?
  2. Do any siblings have any suggestions for us?
  3. Are any synagogues doing this already?

One comment

  1. rickismom says:

    First, you might find my blog interesting. I am the mother of a 14 year old daughter, who has Down syndrome, currently mainstreamed in Israel.
    Sibling support could be basically two things, as I see it.
    1. To include the special-needs person as part of the congregation, to not get upset here and there, if things are a bit “not normal”. Several years ago my daughter, then 9ish, saw all the empty chairs in the synagogue when everyone stood up for shofer-blowing, and promptly ran down the whole row. I was in shock, but one mother there waved at Ricki, and pointed her back to me. No one seemed upset.
    People in our congregation accept Ricki as a regular in the synagogue. They speak to her in normal, not patronizing tones.

    2. If a congregation would REALLY like to support a sibling, they could have a few people volunteer to spend some time with the special-needs congregation member. They should include that person in activities, and to see that there are people who care about and know the special needs person. When the parents some day die, that young adult will need some community members to take an interest in his wellfare. For me this is not so problamatic, Ricki has more than enough siblings to keep an eye out for her. But if there is only one sibling, I am sure that the community taking a REAL interest in the special needs person would be a big help to the sibling, who probably won’t even be living in the immediate area. Someone who cares enough to visit, ask questions, etc.

    3. Special support groups for siblings would be nice, but you probably won’t have enough willing teens to make a group.

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