March 2001
By Norman T. Berlinger
New York Times

Siblings of Disabled Children Have Own Special Needs ~ cont'd

Ariceliz Perez is almost 13 and attends the support group on Wednesdays with Nathan. Her brother, Harry, was born with a rare metabolic disorder called nonketotic glycinemia. Harry is developmentally delayed and hyperactive.

Ariceliz recites a litany of things she does for Harry. "I help him write and in speaking," she said. "He can't pronounce words very well. He can't say his name right. Sometimes he says his name like `Hoppy.' I help him tie his shoes and put on his coat. I help him every day after I finish my homework. He plays with me most of the time. I watch him on weekends when my mom helps my dad outside cleaning the garage or fixing the car."

"She jumps in there," said Maria Cruz, the children's mother. "She attends his needs. Actually, Ariceliz is a mother to Harry."

The normal children are called "shadow siblings" because the disabled child occupies the center of the family. Growing up at the periphery does not help identity formation either.

"The achievements of the disabled child get well applauded but are expectations for the normal child," Ms. McGuire said.

Ms. Weiner, recalling one way she had shortchanged her family's normal child, said: "I caught myself assuming Nathan could do his homework on his own. I should have said, `I want to see your work sheet on long division.' "

No one sees them as people in need because the problems of the disabled child have been attended to, Dr. Rolland said.

Ms. McGuire knows personally how all this can feel and what might help. When she was 8, her 5-year-old sister was mentally disabled by encephalitis.

"Just sitting around a table isn't going to do it," said Ms. McGuire, who plans to use recreational activities to break down the isolation these children feel and to help them form networks with other children. "We will be highlighting the normal kids because they are important. This isn't often done in the family."

Conveying medical and genetic information about the disability is also crucial. Some parents find it painful to talk about it, and so the healthy child stays poorly informed. Some parents will even deny the disability to their other children.

The medical information can offer a good way to introduce a new friend to the disabled sibling. "They can prepare their friend ahead of time," Ms. McGuire said. "We'll give these kids a script if we can."

And the information will serve to answer questions often unspoken: "Is there something wrong with my body that I'm not aware of?" Or, "If I get married and have a child, would my child be disabled too?" Parents want and need to believe that 12- year-olds are not thinking about sexuality and reproduction, Dr. Rolland said. "But they've been thinking about it for two or three years already."