When you are a sibling of a person with a disability, like autism, childhood can be a lonely time.
If, for example, your big sister is lying prone on the lobby floor at the Old Spaghetti Factory, thrashing and screaming because having to wait for a table has turned her world upside down, it can seem like no one else quite understands what you are going through.
But thanks to the Sibling Support Project (SSP), brothers and sisters of people with disabilities can connect and share the ups and downs that come with the territory.
The Seattle-based nonprofit has a number of helpful resources. It is perhaps best known for its series of workshops - called Sibshops - that are designed to help brothers and sisters of children with disabilities connect and share their experiences.
Don Meyer, SSP director, says the workshops do not attempt to sugar-coat the often difficult experience of brothers and sisters, but offer venues for kids to talk about what it is really like to grow up with a sibling with a disability.
For many brothers and sisters, that shared childhood includes things like guilt, anger, resentment, sadness. The story can also include a sense of gallows humor, an unaccountable ability to roll with the punches, and skill at finding joy in the most unlikely places.
To date, the 20-year-old organization has hosted more than 200 Sibshops in eight countries around the world.
In addition to the workshops, SSP also has a listserv - Sibkids - for children who want to connect with other kids, as well as one for parents - Sibparent - a forum for adults to talk about their "other" children.
I first heard of the SSP when I was doing researching for a book about my sister a couple of years ago. My first reaction, weirdly, was anger. I found myself thinking that if I'd only known about SSP as a kid, perhaps I'd have turned out to be a more well-adjusted adult. But as I've aged, I've come to see "normal" as overrated, as well as out of reach, and I soon realized that SSP has much to offer adults, too.
For one thing the organization has a listserv for adults of people with disabilities. The daily digest is a place for people to share success and failure, joy and grief in the ongoing challenge of being one in the family. (Note: The listserv is a carefully protected dialogue and not a place to advertise or seek study participants. Such inquiries should go through Meyer.)
Conversations between the list members are candid, funny, often painful and almost always met with warmth and empathy by the users - adults of all ages with rich and helpful life experience.
This past year, the SSP released an anthology called Thicker Than Water - Essays by Adult Siblings of People with Disabilities, edited by Meyer and published by Woodbine House. The voices of siblings range in age and experience, offering a variety of insight representative of the estimated 6.5 million brothers and sisters of Americans with disabilities.
The organization has also recently seen the development of Sibshops for adults in several states, a trend it is eager to support.
My sister doesn't throw herself on the floor in the lobbies of restaurants anymore, at least in my company, which makes it so much more fun for us both when we go out for dinner. And SSP remains, for adults like me, an increasingly important resource.
