Giving a Voice to Siblings of the Disabled
(link to the article on the NY Times web site)

By JEANNE MUCHNICK
Published: March 19, 2000

WHAT is it like to have a brother who is autistic? Or a sister in a wheelchair? How do you explain a sibling's condition to a child who comes over for a play date? Or how do you deal with stares at the mall?

Questions like these weigh on the minds of children with disabled brothers and sisters. ''Siblings of disabled children are often the forgotten story,'' said Joan Chess, a school psychologist in Mamaroneck.

And she ought to know. She herself is the mother of four children, including a daughter with Rett's Syndrome, a neurological disorder that renders her mute and causes her to use a wheelchair. ''Parents are often so busy with their handicapped child that they don't have the time for the 'normal' ones,'' she said.

Ms. Chess and Meryl Schaffer, a social worker, collaborated on a research project called the Siblings' Voice, which focuses on the needs of Larchmont and Mamaroneck grade-school children with disabled brothers and sisters. It was started five years ago with a grant from the Teacher's Institute of Mamaroneck.

Ms. Chess said that siblings of disabled children often worry more than ''regular'' youngsters: they think about death, about what the future holds for them and their brother or sister. They may feel guilt. And they often feel alone and isolated, especially when there is no other nondisabled sibling to share frustrations and feelings with.

Through their research, Ms. Chess and Ms. Schaffer have given children an outlet. The initial study grew out of Ms. Chess's own dealings with her daughter, Zoe, who was diagnosed as autistic before doctors determined that she actually had Rett's.

''Despite the fact that I'm a therapist, I found I didn't have the tools to deal with everything my family was experiencing,'' Ms. Chess said. Then one day she had what she describes as an epiphany: she saw her three other children, then 6, 11 and 14, playing and interacting with Zoe in normal brother-and-sister ways. ''I felt I had something to learn from them,'' she said. ''So I took a camera and started filming them separately, talking about Zoe.''

At the same time, Ms. Schaffer, who works with prekindergarten children with a range of disabilities, had been approached by parents to start a support group. And so, their research proposal was born: for a project involving on-camera interviews featuring 10 children, ages 6 to 15.

As they worked, the researchers discovered that the children considered their disabled sibling a brother or sister first. Their disability comes second.

They also discovered that, in general, the siblings tend to be extremely sensitive, with a maturity beyond their years. They are also emotionally flexible, patient and tolerant.

But what surprised Ms. Chess and Ms. Schaffer the most was how willing -- and excited -- the children were to share their private thoughts. ''They want to be teachers,'' Ms. Chess said. ''They want to educate the outside world about their siblings. It's a freeing thing for them to be able to say, 'I'm Monica and I have twin sisters, one who has never walked or talked.' ''

Ms. Schaffer said: ''We also found that kids talking to kids is powerful. It soon became loud and clear to us that their voice is more important than anything we could say.''

After they finished the film and used it in workshops with teachers, the project moved into its second phase: bringing the siblings together for support groups. Before 15-year-old Max Abelson of Larchmont started in the group five years ago, he said he did not feel so free to talk about his older brother, Tommy, 16, who has a chromosomal anomaly, which causes multiple deficiencies including cognitive impairments and developmental delays. Now, ''I'm upset when people don't ask me questions,'' he said.

His sister, 10-year-old Anna, agreed, saying: ''Being part of the group made me feel more normal. I felt I could say anything.''

Ms. Chess said that when the children finally met, they ''knew'' each other: ''It was as if they walked in the room and cut through everything else. They could laugh and say, 'You too? I thought I was the only one that was annoyed by that.' It made them feel good to know they weren't alone.''

That is when Phase 3 of their project kicked in. The siblings wrote about their experiences, and the researchers collected their stories to share at teacher-parent workshops.

This is what Laura Bottari wrote about her brother Paul when she was 11: ''It's very frustrating having a little brother with a disability. I definitely have to help him out more than other kids do. I try to help him with his math, and he gets frustrated, and it's hard for us both. There are other things, too. There is a new kid who moved to our block, and he keeps pushing Paul and asking why he has to wear braces and why he runs so slowly. He doesn't ask Paul, he asks me. Maybe it's hard for other kids to understand disabilities. I'm so used to him and being around him that I just see him like any other kid.'' (Paul and the ''new kid'' are now best friends, Laura said.)

Simone Chess, Zoe's older sister, wrote this in 1997 when she was 16: ''I still feel the sinking feeling in my gut, remembering how people would look at her as we walked down the street, how I would hold my head up so high that my neck would start to hurt, and how I would wish she would hold her head, too, so that the people could see the clarity of her shining eyes and the warmth of her smile. . . . I remember the day my parents cried, the day she sat still on the floor and sobbed as they banged on pots and pans to try to make her see them, or hear them, or know them. . . . I remember when she first bit her own hand, holding it in her mouth and grinding her teeth as I stood helpless beside her. I can still see her from before the diagnosis, before they gave her a title, when she was still round and soft against me, and I can remember her only months later, thin and stiff and bent.''

Another phase of their grant was to take the children into the community. Many of them spoke to fifth-grade classes and took part in panel discussions with parents.

The project continues to evolve. ''What concerns a child at 6 is different than at 10 or 15,'' Ms. Chess said.

More information on support groups and programs of the Siblings' Voice is available by e-mail from Ms. Chess (joanchess4@gmail.com) or Ms. Schaffer (merylschaffer@gmail.com).