North Coast Journal - August 21, 2003: A LITTLE GOOD NEWS by Tracey Barnes Priestley

Siblings of special-needs kids

by TRACEY BARNES PRIESTLEY

GROW UP WITH BROTHERS AND SISTERS and you learn a lot. Through all of the battles, successes and negotiations, you figure out how to be in the world.

Grow up with a sibling who has special needs and you learn all of these lessons and a whole lot more.

Having a sibling with a disability is something most of us don't ever think much about. Our attention may be caught by the young child in the wheelchair, the kid trying to keep up with others at the playground, the little boy being guided through the mall. Empathy for the child and his parent courses through our veins. But how often do we look around to see how that child's sibling is faring? Are they helping their brother? Trying to avoid being seen with him? Or, quite often, taking pride in his accomplishments?

Life for children growing up with a special-needs sibling can be a real emotional roller coaster -- isolation, loneliness, loss, embarrassment. Think about it. Something as simple as a family outing can mean rude stares from strangers. Instead of a fun day at the zoo, the sibling is left confused and angry by blatant insensitivity. Or, on the positive side (and there are plenty of positives), who is going to understand the happiness a child experiences when her special-needs sibling masters a new task?

Children who live with special-needs siblings face other issues. Mom and Dad can only stretch themselves so far. Their ability to give their children equal attention can be compromised. On top of all of the "normal" parental tasks, there are the unique demands that come with their special-needs child. So who learns to pick up the slack? The children capable of helping. Caretaking responsibilities can also begin early for these kids and may even last a lifetime. (As adults, these siblings often assume roles as advocates, companions, or even guardians.)

Wouldn't it be great if there were a place for these kids to go to laugh, learn and get support as they wind their way through childhood with their special-needs sibling?

I'm happy to tell you that there is. "Sibshops," sponsored by the Special Needs Connection, Humboldt Child Care Council and the Humboldt County Children and Families Connection, is a program for children who have siblings with special health and/or developmental needs.

Kathryn L. Johnson, parent support specialist at the Special Needs Connection, gets a nod for bringing Sibshops, a national program, to our area. A dedicated and energetic child advocate, Johnson described a Sibshop as "an opportunity for brothers and sisters of children with special health and developmental needs to get peer support and education within a recreational context." The program is founded on the belief that the siblings of special-needs kids have much to offer one another -- if they are given a chance.

I wondered exactly how that "chance" was created in a group full of children of very different ages and experiences. Johnson, who facilitates the Sibshops, described a typical event. "We begin by having the kids make "face tags" to wear, drawings of how they see themselves. Next we may offer some non-competitive games that everyone can enjoy. Eventually, we have activities designed to be fun and informative and to get kids sharing their experiences, such as `Dear Blabby' (a variation of Dear Abby)." In this activity, actual letters from children who live with special-needs siblings are pulled from a hat and read out loud. The issues they raise are familiar to many of the children, so it's not hard to get a discussion going. Johnson pointed out that this is a productive exercise, as the "kids typically relate to the situations and offer up ideas on how to handle the problem."

As the day progresses, other activities may be included. Johnson showed me a "Sound Off" form. It begins: "If I could tell the world just one thing that is good, bad, so-so about having a sib with special needs, it would be..." (The children complete the sentence.) Johnson noted how often the kids relate pride and accomplishment in their sibling, wanting the world to "really see their brother and sister for who they are, not just their disability."

Sibshops are not therapy, although their effect may be therapeutic for some children. Most brothers and sisters of children with special needs, like their parents, cope well, despite the challenges of an illness or disability. Sibshop workers and volunteers always keep an eye open for participants who may benefit from additional services, but the primary focus of Sibshops is on a positive atmosphere and real problem-solving. "Of course," Johnson added, "there's always food, too!"

The only bad news in this story is that this program will run out of funding by the end of the year. Then what happens?

Johnson is optimistic and determined: "So far, we have been able to offer Sibshops to families for free. We have some great volunteers who help us, but we have to rent the space and provide food. We're pretty good at keeping our costs down. I hope we can connect with a service group or private donors to help us continue."

Sounds like a good idea to me, giving time and/or money to a program that is doing something productive and positive for a bunch of deserving kids. How about it? If you or your organization would like to help, you can reach Johnson at 445-1195.

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