Beth has a special brother named John. He's younger than she is, so he's often called the baby of the family. When Beth's mother was waiting for John to be born, she was excited. She looked forward to having a whole new person in the family. Beth didn't even care if the baby turned out to be a boy or a girl; she was just looking forward to being someone's older sister.
After John was born, the doctor told Beth's mother and father that the baby had a condition called Down's syndrome. While John would be able to grow and learn, he would not grow and learn in the same way Beth did. He would always be different from the rest of the family.
Beth's parents were sad to discover that their baby had Down's syndrome. But they loved John and welcomed him into the family. Beth loved John from the moment she saw him wrapped up in a yellow blanket when her mom brought him home from the hospital.
As John grew up, he learned to walk, just as other babies do. He learned to talk -- but not as clearly or as easily as Beth could talk. He started going to a special school. Today, John can be a wonderful companion. He's affectionate, and he loves to do things with his older sister. Beth loves him a lot -- but she sometimes feels sad about having a brother who is different from her friends' and classmates' brothers and sisters.
Some of the kids in the neighborhood tease John because he looks and acts different from other kids. "He acts like a baby," they say. "When is he ever going to grow up?" When other kids tease John or call him retarded, Beth gets really mad.
These are confusing feelings. And they're common feelings for the brothers or sisters of handicapped people to feel. Whether a brother or sister has Down's syndrome, is blind or deaf or has to stay in a wheelchair, the "normal" members of the family may sometimes feel bad about it. Beth worries about John. She wonders what will happen to him when they both grow up. She feels sad for him sometimes, and at other times she gets mad at him. Then she feels bad, because it's not John's fault that he has Down's syndrome. It's just one of those things that happens sometimes.
Beth gets mad at John when she starts feeling as if her parents spend more time caring for her special brother than they do noticing her. "I'm still here," she thinks. "I wish they'd pay more attention to me." Sometimes she feels resentful because her parents expect her to look after John. Most of the time she doesn't mind. After all, he's a lot of fun. But sometimes she wishes she could play outside and forget that she needs to keep an eye on her brother.
Doctors and psychologists are interested in studying families like Beth's. They hope to be able to find out about the good parts of having a special person in the family, as well as understanding the stress it can cause. These researchers have interviewed people who grew up with handicapped brothers and sisters to find out about their experiences.
One researcher talked to students at Syracuse University in New York state. She found that while there are difficult parts to growing up with a handicapped brother or sister, there are good parts, too. Her research showed that many people like Beth grow up to be tolerant people who find it easy to accept that each person is different. Many people who grow up in families like Beth's turn out to be kind and generous to other people, too. They may be especially patient with other people, because they learned how to be patient with the handicapped member of their family.
Beth is lucky. She has understanding parents who ask her about her feelings and pay special attention to her as well as to John. For Beth, life with John has rewards and drawbacks -- just like life with any other brother or sister.
*Tips for Parents
"Brothers & Sisters: A Special Part of Exceptional Families" by Thomas H. Powell and Peggy Ahrenhold Ogle (Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, Md. 21285-0624; $16.95) reviews current research on the brothers and sisters of the handicapped. Powell, of the educational psychology department at the University of Connecticut at Storrs, and Ogle, of the special education department at the University of Maryland's College Park campus, offer an extensive listing of support services for the handicapped as well as tips for parents. Their suggestions include: Value each child individually. Schedule special time with the sibling. Welcome other children and friends into the home. Require the disabled child to do as much for himself as possible. Don't expect the sibling to be a saint.