March 2001
By Norman T. Berlinger
New York Times

Siblings of Disabled Children Have Own Special Needs

Twelve-year-old Nathan Weiner does not want to admit it, but he did not want to sit next to his brother, Daniel, in Sunday school one morning last September because it embarrassed him. Nathan was not embarrassed because Daniel is three years younger. It is because Daniel is autistic.

"There were some children in the class who hadn't met Daniel yet," Michelle Weiner, their mother, said. "This was Nathan's involuntary introduction of his brother to those children. Nathan didn't want to be Daniel's caretaker, and he didn't want to be associated with him."

Nathan said, "I love my brother the same no matter what he is." But Nathan's disabled brother can be unpredictable.

It is hard enough being a new adolescent, like Nathan. It is even harder when a new adolescent is different because of a developmentally disabled brother or sister at home.

"You want to be like everyone else, and you're not," said Mary Kay McGuire, director of the Sibling Support Program at the Advocate Illinois Masonic Medical Center. Ms. McGuire runs the only support program in Chicago for healthy children with developmentally disabled siblings, including adolescents like Nathan.

But only a tiny percentage of children with disabled siblings make their way to a support group, and few are of junior high school age.

For many of them, bringing a new friend home to meet the disabled child is the hardest part of it all, Ms. McGuire says.

"It becomes a sorting process," she said of making friends. The ones who are nice to the disabled child or who do not make fun are the ones who are kept. "The ones who don't hit the family's benchmark are discarded and not invited back."

"At about 4 years of age, the teasing starts and lasts until high school," she said. The normal child hears the sibling called "retarded" or "weird."

"Eight-year-olds get embarrassed easily," she said. "When these kids get to be 11 or 12, it gets rough and stays rough."

Young teenagers can also get embarrassed by the appearance of a brother or sister with cerebral palsy, or by the sometimes immature behavior of a sibling with Down syndrome.

And autistic siblings may have odd mannerisms, Ms. McGuire said. They might flick their fingers in front of their faces. Or they might shout "no, no, no, no" when someone touches something of theirs. Nathan's brother often recites long stretches of dialogue from television commercials.

"There's no question that teenagers love the disabled sibling deeply," said Dr. Carol Rolland, a developmental psychologist at Advocate Illinois Masonic. The teenager's love often manifests itself in providing care for the sibling, but in the extreme this may interfere with the teenager's own development and formation of an identity.