The final story in the series covering the 2014 MDA Clinical Conference addresses helping the brothers and sisters of children with disabilities
"Anything we can say about being a parent of a person with special needs we can pretty much say for being a sibling of a person with special needs," said Don Meyer, director of the Sibling Support Project based in Seattle.
Meyer talked about siblings of people with disabilities at the 2014 MDA Clinical Conference in Chicago during an afternoon session titled "Specialized Care," held March 18.
"In the United States, there are hundreds of people with full-time jobs worrying about the needs of parents of those with special needs," Meyer said. "But I believe I'm the only one with a full-time job worrying about the siblings of those with special needs."
He finds that perplexing, because, he notes, brothers and sisters are likely to have the longest-lasting relationship with the person with special needs. "It may last 65-80 years," he said, and outlast the parent-child relationship.
"The greatest impact on social development of people with disabilities is siblings," Meyer said. "We should think about brothers and sisters at every turn, but I've always had to remind people about the needs of siblings."
Help through Sibling Support Project, Sibshops
Meyer does that through his Sibling Support Project, whose mission is described as "training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, maintaining email lists and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong and ever-changing concerns through workshops, a website and written materials."
The core of Meyer's program is called Sibshops, described on his website as "pedal-to-the-metal celebrations of the many contributions made by brothers and sisters of kids with special needs."
Sibshops are gatherings where brothers and sisters of children with disabilities obtain peer support and education, as well as recreation. Sometimes described as "events" rather than "workshops," they intersperse information and discussion with games, cooking activities and special guests. Sibshops can be facilitated by teams, often comprising social workers, special education teachers, psychologists, nurses and adult siblings of people with special needs.
They're usually held monthly or bimonthly on Saturdays and can be offered in a series or as stand-alone events.
Lifelong needs, altered perspectives
Siblings of children or adults with disabilities have lifelong and constantly changing needs for information and support, Meyer said. He noted that siblings may feel:
On the other hand, he said, siblings of people with disabilities often express:
Many move into helping professions, become disability rights advocates or enter the Peace Corps, Meyer said.
Pointers for parents, professionals
Meyer provided the audience with a few pointers on helping siblings, inside or outside the context of a Sibshop. He said parents and professionals should:
He recommended that parents of children with disabilities and typically developing children do the following: