Siblings Need Support Too

Don Meyer is the director of the Sibling Support Project, a national effort dedicated to the interests of millions of brothers and sisters of people with special health, developmental and mental health concerns.  As the project’s director, Don has conducted more than 300 workshops in all 50 states as well as Canada, Guatemala, Ireland, Italy, Iceland, Turkey, England, New Zealand, and Japan.  His workshops and trainings have reached thousands of parents and providers have helped establish more than 390 Sibshops worldwide.

Below is an interview I conducted with Don about Sibshops and the need to support siblings of people with disabilities. Part II will be posted soon.
– Ephraim Gopin, Communications Director, Ruderman Family Foundation

Credit: Mike Houle

Credit: Mike Houle

What are Sibshops?

For the kids who attend them, Sibshops are pedal-to-the-metal events where they will meet other sibs (usually for the first time), have fun, laugh, talk about the good and not-so-good parts of having a sib with a disability, play some great games, learn something about the services their brothers and sister receive, and have some more fun. Sibshops are evidence of their loving concern for the family member who will have the longest-lasting relationship with a person who has a disability. Often, local agencies work with other like-minded agencies to cosponsor one Sibshop for all the brothers and sisters in a given community.

How did you get involved in the issue of siblings of people with disabilities?

Sibshops is an outgrowth of work I did with dads of kids with disabilities at the University of Washington (Seattle) in the late seventies. The university had many groups for parents of children with Down syndrome that were functionally called “mom groups.” My advisor advised me to get fathers involved, which I did along with a father of a child with Down syndrome.

As I began to run these groups, I began to realize more was needed for extended family members and not just parents. That’s how Sibshops got its start back in 1982.

Who facilitates Sibshops?

We like to have both family members and service providers as a part of the Sibshop leadership. We very much like having adult sibs as Sibshop facilitators. The facilitator who is a service provider will know about the needs represented in the group and about services available in the community.  Regardless of whether the facilitator is a family member or service provider, we seek certain qualities in a good Sibshop facilitator.  We want them to truly enjoy the company of kids and have had experience working with kids; to be especially good listeners; and to have the ability to convey a sense of joy, wonder, and fun.

Are Sibshops a form of therapy?

Sibshops may be “therapeutic” for kids to attend, but they’re not therapy.  Sibshops takes a wellness perspective.  They’re a celebration of the many lifelong contributions made by brothers and sisters of people with disabilities.

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What’s so special about the sibling relationship?

The sibling relationship is life’s longest relationship.

1)     Anything you can say about being the parent of a child with a disability, you can pretty much put ditto marks around it for brothers & sisters. Studies have shown that sibling experiences parallel their parent’s experiences.

2)     Brothers and sisters will have the longest lasting relationship with the sibling with a disability, even longer than the parents. When parents aren’t there to look after the child, siblings will have to make sure the person with a disability lives a dignified life.

3)     Over the long haul, no one logs more minutes/hours with kids with a disability than siblings.

4)     No classmate in an inclusive classroom has a greater impact on the social development of a kid with a disability than their siblings.

This helps explain why I think supporting siblings is so important. Remember: parents receive more services and considerations than siblings do. That needs to be changed because the siblings will still be around long after the parents have passed on.

Don lives in Seattle with his wife, Terry DeLeonardis, a special education teacher and consultant and their  four children. Don is the senior author or editor of numerous articles and six books and received the 2007 Duncan Award from Children’s Hospital in Seattle for his work with families.  Don recently created a group for grandparents to connect with their peers. Enjoy this video about the importance of creating services for siblings.

Read our last post: It’s Jenny’s Decision

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3 Comments

Filed under Disabilities rights, Disabilities Trends, Initiatives, perceptions of disability

3 responses to “Siblings Need Support Too

  1. Emily Rubin

    Thanks for the terrific interview. Don has done amazing work on behalf of siblings!
    Emily Rubin

  2. We feel so fortunate to have a Sibshops program in our area specifically devoted to kids with siblings on the autism spectrum. It has been a safe and wonderful place for our daughter to be with kids who “totally get it.”

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