Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

In 1978, Don Meyer was a graduate student of Special Education at the University of Washington (UW). Energetic and kind, Don was a natural teacher to whom kids were immediately drawn. At UW, he was challenged by a professor to consider the impact of a disability on family members who were not typically found in clinic waiting rooms: first fathers, then, eventually, grandparents and siblings.

Don quickly learned there were considerable needs among these family members, but few supports to address them. In 1981, Don became the Coordinator of the Supporting Extended Family Members (SEFAM) Project at the Experimental Education Unit at UW. In researching sibling supports, he read about therapy groups comprised of a circle of folding chairs filled by young siblings, a therapist, and a box of tissues. This support model did not speak to the 11-year-old in Don, nor seem like the right fit for many of the kids he knew. Children, after all, learn about and experience the world through play, and there was nothing fun about the sibling support models he studied. Don had a different idea. He called it a Sibshop, and launched the first one at UW in 1982.

Sibshops are pedal-to-the metal events where school-age siblings of kids with disabilities can receive information and support in a highly recreational setting. At Sibshops, we play lots of fun games, discuss the ups and downs of having a sibling with a disability, eat kid-friendly food, and learn something about disabilities and support services. Although Sibshops may be described as “therapeutic” by some, they are not therapy, group or otherwise. Sibshops celebrate the many contributions of siblings, and above all acknowledge that siblings are special, too.

Today’s Sibshops, numbering more than 500 worldwide, are part of the Sibling Support Project (SPP), which Don founded in 1990 as the first national program in the United States dedicated to supporting siblings of people with developmental, health, and mental health concerns. The SSP is a program of Kindering, the largest and most comprehensive neurodevelopmental center in Washington.

Sibshops exist in just about every state, and in a growing list of countries, including Argentina, Canada, Costa Rica, Iceland, Ireland, Italy, Japan, Malta, New Zealand, Singapore, and Trinidad and Tobago. They are hosted by early intervention agencies, children’s hospitals, disability service providers, schools, parks and recreation departments, religious institutions, and a variety of other community organizations. Sibshops support siblings of kids with a wide array of diagnoses: cognitive and physical disabilities, chronic and life-limiting illnesses, and mental health concerns.

Sibshops have thrived in many diverse settings as they bring young siblings together in two universal languages: shared experiences and play. At Sibshops, young siblings receive the priceless gift of validation from peers who understand and can relate to their experiences. In a well-run Sibshop, facilitators create space for the kids to comfort, advise, and problem-solve with one another, and then step aside and let the magic happen. The focus on play enables kids to come to Sibshops and do what they do best: Be kids and have fun! This is especially important for young siblings, who often grow up faster than their peers due to their early exposure to adversity, difference, and increased responsibility.

Today, we work to expand sibling supports around the globe by training and certifying others to run Sibshops in their local communities. Our goal is to make Sibshops accessible to as many siblings as possible. As a sibling, I agree with other adult sibs who often say, “I wish I had Sibshops when I was a kid.” I feel incredibly lucky to be able to experience Sibshops now by teaching others how to facilitate them. I am deeply moved when young siblings attend their first Sibshop, quiet and uncertain at the start, and are positively transformed by the end, asking when they can return for the next one. It is an astounding change that takes place in Sibshops everywhere.

“Every time we complete a Sibshop series, kids and their parents are asked to fill out the Sibshop Surveys,” recently shared a Sibshop Facilitator in Ottawa County, Ohio. “When asked, ‘How can we make these Sibshops better?’ one child wrote, ‘Can't. It’s already too good to be true.’ This has to be one of the most rewarding jobs I've ever done,” (Sibshop Facilitator Forum, 2019).

I am also moved by the warmth and strength of our online communities for older siblings. SibTeen (for adolescents), Sib20 (for sibs in their 20s), and SibNet (for adults) are closed Facebook groups moderated by the Sibling Support Project. In these groups, siblings share information, vent, celebrate, validate, and support one another.

“What I really want to write is a note of gratitude for SibNet,” wrote a sister from New York. “For the first time in my life I have found this ‘home.’ It is one I have needed for a very long time. My perspective has been broadened, challenged and opened in ways I could not have anticipated. I can tell I am calmer, less panicked, less alone. I kind of feel like we are this group of quiet warriors, separated by so much distance and the strangeness of the internet, but somehow together, holding each other up, pushing each other forward.” (SibNet, 2019).