Siblings Need Support Too- Part II

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 part two of an interview I conducted with him about Sibshops and the need to support siblings of people with disabilities. Part one of the interview can be found here.
– Ephraim Gopin, Communications Director, Ruderman Family Foundation

Credit: Mike Houle

Credit: Mike Houle

Who attends Sibshops?

Most Sibshops are for sibs of kids with developmental concerns. While Sibshops were developed for sibs in the 8-13 year-old age range, Sibshops (depending on the community) are being offered for sibs as young as six and for teens as well.

Why are most Sibshops developed for kids aged 8-13?

That age is the easiest time to get kids together. Their sibling’s disabilities may be affecting them. The concerns of siblings include:
– embarrassment (for example, a sister who removes her top at the swimming pool or the brother who has a major meltdown)
– resentment
– jealousy (the world revolves around the sibling)
– concern about the future that young siblings may be feeling

What more is needed for siblings of people with disabilities?

There’s still a need to create opportunities for siblings to connect with their peers. It’s natural that when we meet a parent of a child with a disability, we introduce them to other parents in the same boat…but for siblings we don’t automatically do that. I have met siblings in their forties who are just joining SibNet and they post: “I’m so glad I found this…this is the first time I’ve ever talked with anybody about my sibling’s disability.”

Siblings need info and that info changes as they get older. When they are…
– Kids: They need to know they did not cause the disability and they can’t catch it.
– Teens: They need information about what will happen when everyone grows up. Many times, parents do not share their plans for when they’re gone and so teens devise their own plans. They need to be able to discuss those plans and make sure they are realistic.
– Siblings who reach child rearing age: If there’s a genetic component to their siblings disability, they need to know so they can make informed decisions.

As far as policies, agencies need to acknowledge that siblings require services too. Agencies need to tweak their policies and actively reach out to them. Over the last four years, I have seen the beginnings of national organizations reaching out to siblings and creating programming for them. To me it’s obvious that this should have happened years ago- but better late than never.

We live in a time where people with disabilities will outlive their parents. Who will become the point people when the parents die? SIBLINGS! We need to do more for them. Immediately.

Where can I find a Sibshop near me?

OLYMPUS DIGITAL CAMERAThere are over 400 Sibshops in almost every state and country ranging from Argentina to Iceland and Ireland to Japan.  We have an online directory of registered Sibshops.

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 Meyer 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: Including Everyone Together

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Filed under Disabilities rights, perceptions of disability

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