Safe Haven: The ClubSTAR painting
For siblings of patients with a disability or a special health care need, it is not always easy to find outlets to vent their feelings and frustrations. A study published in the August 2013 issue of Pediatrics revealed that siblings of children with disabilities are more likely to suppress feelings of guilt, resentment and isolation than siblings of typically developing children. Thanks to the Sibshops program at MassGeneral Hospital for Children (MGHfC), brothers and sisters of special needs patients have a place that is just for them.
“The program lets kids know they’re not alone, that there are others experiencing the same feelings and emotions,” says Katie Weagle, MS, CCLS, program coordinator of the MGHfC Sibshops program.
For the Grant family, the Sibshops program is a place for 9-year-old Gaelyn to discuss the good, the bad and everything in between. Gaelyn’s 14-year-old brother has Asperger’s syndrome and attention deficit hyperactivity disorder. “We brought Gaelyn to Sibshops because she started to show signs of stress and unhappiness,” says her mother, Jennifer Grant. “We wanted to make sure that her emotional needs were not being neglected in the midst of taking care of her brother’s needs.”
In the two years since Gaelyn has been attending Sibshops, her mother says she has seen an improvement in her children’s relationship. “Gaelyn has learned to be less competitive with her brother and more patient in understanding his needs.”
It is a sentiment Weagle hopes the Sibshops program can provide to other parents. “Here at MGHfC, it’s important we commit to the well-being of the entire family.”
The MGHfC also offers Club STAR, another support group that highlights the hospital’s family-centered care model. “This group is special in that it provides a supportive community for children who have experienced the death of someone close to them,” says Hillary D’Amato, MS, CCLS, Club STAR program coordinator. “All of our activities focus on helping children express their emotions related to the death and keeping the memory of their loved one alive.”
One of the most memorable projects for the group is a painting created during the program’s first year that has become the symbol of Club STAR. “This painting shows a group of kids looking up at a sky full of stars. What is special about it is that when a child joins Club STAR they paint a wooden star in honor of their loved one and it is added to the painting. The stars in the sky keep on growing,” D’Amato says.
While it is sometimes hard to listen to what the kids have to say, D’Amato admits, she finds comfort in knowing the program offers an emotional safe haven. “They are so open and honest at every meeting. This may be the only place where they can talk to others who know what they are going though. We don’t usually leave in tears; we often leave laughing.”
For more information about support groups offered by MGHfC, call 617-724-5727.
Read more articles from the 10/11/13 Hotline issue.