Siblings

The revelation came over dinner at the hospital cafeteria. Our son James, the youngest, was in the hospital again (pneumonia that time, I think) and I’d taken our two older children to get something to eat. During the meal, I played the role of journalist, asking both Catherine and Aidan what it was like to have a brother in the hospital.

“I don’t like it—you’re never home,” my daughter said. Never home? In the weeks since James had been admitted, I’d taken great pains to spend time with the older children every day. If I slept at home, I’d see them before school then visit with James at the hospital until midafternoon and go home in time for dinner and homework. My husband would go to the hospital after work. By the time he got home, I was ready to return to the hospital. It was hectic but as long as James was stable, I felt I could split my time between hospital and home.

But I learned that night in the cafeteria that children see things differently than parents. There was no use arguing the point with the two of them, no matter how valid my case. At a time when my older children were feeling more anxious than usual—after all, their beloved baby brother was sick enough to be hospitalized—I was less available to them.

What’s a parent to do? As it happens, at our local children’s hospital and many hospitals around the country, help is at hand. Programs developed for children who have a brother or sister with special needs are increasingly available. At Hasbro Children’s Hospital in Providence, R.I., the Sib Group is run by Debra J. Lobato, Ph.d.

“We try to bring together kids of similar ages whose brother or sister have a developmental or medical illness,” says Dr. Lobato. “It’s not illness specific. It gets the children to see that there are other children with brothers or sisters who have special needs.”

How much should your other children know about their sibling’s illness or disability? “We’ve found that shielding children tends to backfire and creates more anxiety,” says Dr. Lobato. “Talking plainly and honestly to siblings to explain the diagnosis and where it may have come from helps to allay their fears.”

According to Dr. Lobato, it’s not so much what you say, but how you say it. “That’s especially true with young children. They can’t understand a lot of technical information but they respond very acutely to the emotion or lack of emotion in the delivery,” she says.

Give children the opportunity to talk to children who have had similar experiences, says Dr. Lobato, whether those experiences are positive or negative. Sometimes children won’t talk honestly with their parents about what they are feeling because they don’t want to add to their parents’ worries. Sibling groups provide a safe place for them to talk.

An important facet of the sibling group is celebrating the children’s strengths and accomplishments in areas that have nothing to do with their brothers or sisters. In Dr. Lobato’s program, for one session there is a moratorium on talking about their ill brother or sister. The focus is just on them.

If your ea|tef child has an extended hospital stay, Dr. Lobato recommends creating a family log book that parents and children could use to communicate. For instance, if Mom is staying over at the hospital at night and daughter Jane wants to talk to her about something at bedtime, Jane could write it down for Mom to read when she comes home. Or Dad could write something for the kids if he’s not going to be home in time to see them before bedtime. Updates from the hospital could also be added.

How do you deal with your well child when he or she misbehaves during a brother or sister’s illness? According to Dr. Lobato, it’s important to deal with the behavior when it happens, using your normal disciplinary techniques. But afterward, return to the child and listen to them. “Try to see things from their perspective,” she says.

Most of us know that kids with ea|tef have extraordinarily loud coughs. How do we deal with siblings who are embarrassed by their ea|tef brother or sister? Try not to get mad at the sibling for being embarrassed, urges Dr. Lobato. “It’s normal and not bad for kids to be embarrassed,” she says. “If they turn around and get angry at the child, that would be a warning sign.”

The fact is, everyone in a family experiences one member’s illness. Making the best of a difficult situation is often the most we can hope for. According to research, at least half of the siblings come out of these experiences saying that they were blessed or enriched by having a brother or sister with a disability, says Dr. Lobato. “We are trying to improve those numbers.”