Siblings of medically complex children can rely on Sibshops for an environment that is safe and “uniquely theirs.”
Sibshops Offer Unique Spot for Siblings
Children with complex medical needs rely on the Coordinated Care Clinic at MassGeneral Hospital for Children to help facilitate and guide treatment among various specialists. What about siblings of medically complex children?
Studies show that as a result of their situation, well siblings may harbor feelings of isolation, guilt and resentment, as well as pride, loyalty and increased insight into the human condition.
Sibshops participants engage in a group activity.
This is where Sibshops come in. Led by Shellie Leger, LICSW, and Hillary D’Amato from Child Life, along with other specialists from Child Life and Coordinated Care, Sibshops provide an active, therapeutic environment for typically developing children between the ages of 8 and 13 who have a sibling with special needs.
“This is not psychotherapy; we play games, the underpinning of the games is to allow the children to think what it means to them (to be a brother or sister of a special needs child),” Leger says.
Underscoring the family-centered care model at MassGeneral Hospital for Children (MGHfC), Leger and her colleagues recognize that the needs of a child with a disability impact the whole family.
Sibshops offer children opportunities to give and receive peer support, communicate their feelings and engage in lively activities in an environment that is safe and “uniquely theirs,” Leger says. Parents are not allowed during the two-hour workshops and participants are encouraged to speak candidly about their experiences.
“During the groups you can look around the room and see heads nodding in agreement when one sibling is talking,” D’Amato says. “They get each other and understand better than anyone else what each other is going through.”
In one recent art project, the children created a collage of words they chose to describe themselves, their brother or sister with a disability, and words that described them both. Leger was surprised by the level of participation and success of what was a fairly complex project.
“I’m really excited about this group; I think it’s proved itself to be valuable,” Leger says.
Group participants seem to be equally enthusiastic, D’Amato says.
“It is especially rewarding to hear feedback from parents who describe how much their child enjoys Sibshops and how they had been searching a long time for this type of group for their child,” she says. “One parent mentioned that her daughter chose to go to Sibshops instead of going to a Halloween Party!”
Teddy Fleming, a recent social work intern at MGHfC, became involved in Sibshops shortly after starting work at the hospital. Fleming’s older sister, Abby, is intellectually disabled and functions at the developmental level of a 7- or 8-year-old.
It was with Abby in mind that Fleming co-facilitated one of the first Sibshops at MGHfC and later went on to run the 2010 Boston Marathon to raise money for the program.
“Individuals like Abby and their siblings are just as deserving as the next person to have the opportunity for the most meaningful life they can possibly have – but the truth is, the majority of the time there’s a lot, maybe too much, in the way for that to happen,” Fleming wrote on his fundraising website. “What so many don't realize is that, as their siblings, we are just as invested in that struggle.”
Siblings of those with special needs typically have the longest lasting relationship with that sibling, outliving their parents. These siblings often take responsibility for their brother or sister.
Sibshops include activities that allow the well siblings to recognize how special they are, Fleming says. “They have so much to say and so much to bring to the table, in terms of insight and how they see the world. The humility you see is even more staggering; it’s truly inspiring,” he adds.
Fleming raised $1,700 for Sibshops at MGHfC. Leger says, “Not only did he rise to the occasion as an emerging clinician, but he also went above and beyond to run for this group.”
Sibshop leader and Child Life specialist Sacha Field (standing) oversees a craft project.
Sibshops originated as part of the national Sibling Support Project directed by Don Meyer and based in Seattle, Wa. The idea to bring Sibshops to MGHfC came forth in spring 2009 as a suggestion by Patricia O’Malley, MD, Director of Pediatric Palliative Care.
As a result, Leger, from Social Work and Palliative Care, and Hillary D’Amato in Child Life, attended Sibshops training and put on their first program that fall.
Sibshops take place on a Saturday each month, with a hiatus during the summer. Each workshop costs $10 per child, but the fee can be waived for families who are unable to pay.
The core group of attendees comprises eight families, who travel from as far as New Hampshire and Cape Cod for the Boston Sibshops. Leger says the program is now open to the outside public, with space for four additional participants.
Those interested in learning more can contact Shellie Leger at 617-643-2166.