Siblings of Children with Neuromuscular Diseases Need Attention, Too

The final story in the series covering the 2014 MDA Clinical Conference addresses helping the brothers and sisters of children with disabilities

Children with disabilities and their siblings can have relationships that outlast those between parents and children.
Article Highlights:
  • Few professionals or programs exist to provide for the needs of siblings of people with special needs, even though siblings typically have a longer-lasting relationship with someone with a disability than his or her parents do.
  • Don Meyer, director of the Seattle-based Sibling Support Project, is a leader in this field and presented at the MDA conference.
  • Meyer told the audience that siblings of people with special needs can feel guilty, resentful or isolated, but that it is possible to help them through supportive and honest communication.
by Margaret Wahl on April 11, 2014 - 1:57pm

"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:

  • isolated;
  • guilty about surpassing the disabled sibling in ability or moving away from home;
  • resentful of the disabled sibling; or
  • that they need to "make up" for the disabled sibling in terms of achievement.

On the other hand, he said, siblings of people with disabilities often express:

  • insight into the human condition;
  • tolerance for a wide range of people; or
  • an appreciation of good health.

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:

  • provide age-appropriate information, including material for young readers; and
  • introduce siblings of children with disabilities to other siblings of children with disabilities.

He recommended that parents of children with disabilities and typically developing children do the following:

  • carve out regular time to spend with the typically developing child, even if that means nothing more than a trip to a fast-food restaurant;
  • learn more about life as a sibling of a child with a disability;
  • make plans for the future of the child with special needs;
  • share those plans with the typically developing children in the family; and
  • keep in mind that their own interpretation of a child's disability has a great impact on siblings' interpretation of the disability.
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