Healthy children need support when sibling is sick
By Cheryl Powell
Knight Ridder Newspapers
Kristin Willson missed her mom. The 13-year-old understood that her mother often needed to be by her little sister’s hospital bedside as the youngest member of the family battled leukemia.
Still, that didn’t make her miss her mom any less.
When Kristin talked to friends about her feelings, though, no one could truly relate.
“Most of them don’t really understand what I’m really going through,” she said.
But that all changed when she attended a free support program at Akron, Ohio’s Children’s Hospital for the healthy children dealing with the challenges of having a sick family member.
“It made you feel like you weren’t the only one,” she said.
Just as the squeaky wheel gets the grease, the sick child in a family often gets the bulk of the attention from their parents.
When a child is faced with a life-threatening or life-altering health crisis, parents often must drop everything to make sure critical medical needs are met.
Unfortunately, the needs of other children in the family often are put on hold, said Don Meyer, director of the national Sibling Support Project of the Arc of the United States.
“Too often, brothers and sisters are in the literal as well as figurative waiting rooms,” he said.
The Sibling Support Project helps establish “Sibshop” support programs for children with sick and disabled siblings worldwide.
The program at Children’s uses some of the curriculum developed by the Sibling Support Project.
For about 10 years, Akron Children’s Hospital has been offering its support program, called “Supporting Super Kids,” for two consecutive Saturdays twice a year.
Social workers volunteer their time to run the classes.
Participants, ages 5 through 16, play games and do crafts and other interactive activities to help develop their own coping strategies, said Nancy Barst, a Children’s social worker who works with the program.
“We want these to be rewarding on a number of levels,” Meyers said. “We don’t want these kids to perceive this as being one more way that their siblings are screwing up their lives. We don’t want these to be the programmatic equivalent of spinach.”
At Children’s, participants also are shown IVs, CT scanners and other tests that many patients undergo to demystify the procedures, Barst said.
“We try to answer all their little questions,” she said.
Although the program at Children's originally focused on children with a brother or sister who had cancer, the course now is open to any child who has a family member with a serious health problem.
Change in routines
A major issue children with a sick family member face is adjusting to changes in their routines, said Kim Schafer-Alt, a Children’s social worker who is organizing the program.
“They may not eat as a family much anymore,” she said. “The siblings may have to spend more time at a family member’s home or a friend’s home because there is so much time involved with hospital appointments, doctor’s appointments.”
Kristin and her 11-year-old brother, Ryan Willson, attended the Supporting Super Kids classes twice since their younger sister, Alyssa Baynes, was diagnosed with cancer three years ago.
Alyssa, 6, has been in remission since earlier this year.
Their mother, Kim Baynes, said she and husband, Shawn, realized her older two children had to change their schedules and give up some of their activities so she could be with Alyssa as she fought cancer for three years.
“The older two were kind of juggled from here to there,” their mother said. “The sick child gets a lot of attention from everybody.”
Different children react differently to a health crisis in their family, said Laura Gerak, a pediatric psychologist at Children’s.
When a sibling is sick, the well child often will feel extra pressure to be the “good kid,” because the parents are under enough stress, Gerak said.
Some younger children worry they’re going to get sick, too, she said. Others feel guilty and think they caused the illness by the typical sibling rough-housing or name-calling.
Me, too
On the other hand, Gerak said, it’s also not unusual for children to say they want to be sick, too.
Jennifer Prunty saw this happen with her daughter, Brittany.
The 6-year-old often got annoyed when her younger brother, Zack, 3, came home laden with gifts after being hospitalized for complications caused by a severe form of hemophilia, a blood disorder.
She also repeatedly asked to have a medical bracelet like her brother’s, Prunty said.
“She’s led a life the last three years of being absolutely jealous of her brother,” Prunty said.
Prunty even enrolled Brittany in the support program at Children’s last year to help her cope.
When a doctor recently discovered that Brittany also has a mild form of the same disorder, her parents fretted about how to tell her.
When they broke the news, her reaction shocked them.
“When can I get a bracelet?” she asked.
The younger girl also reminded her parents that the hemophilia clinic at Children’s was now her clinic, too, not just “Zack’s clinic.”
“Her reaction when we told her was that she was so excited,” Prunty said. “She had no idea how that severely changed her life. All that she cared about was she was excited and she was going to get her bracelet.”
Children cope better if their regular routine is maintained as much as possible, Gerak said.
“The more they can stay with their usual routines, that keeps the siblings riding along,” she said.
Prunty’s advice to parents is this: “When people offer to help, let them.”
Parents also can help by being as honest and open about the situation as possible, she said.
“Don’t leave them out, whatever you do,” she said. “Kids are so bright. They know. If you’re saying one thing and things are getting serious, they know.”
