Serving the siblings of special-needs kids

A place to play - and talk

April 01, 2007|By Laura Shovan | Laura Shovan,special to the sun

On a rainy Saturday, William Engle is happy to be indoors, playing parachute with other children. His peers lift the silk parachute into the air and William, 5, races underneath, swapping spots with another boy.

But William and his playmates have gathered for more than rainy-day fun. They are participants in Sibshops, a nationwide program for siblings of special-needs children. The workshops combine games with opportunities to talk about the joys and frustrations of having a disabled brother or sister.

William's mother, Debbie Engle of Columbia, said, "It's a good way for my son to meet other children who have siblings that have a disability." William's 3-year-old brother, Robby, has Down syndrome.

Sibshops provides William with "a place to go and talk about it with people who won't make judgments," Engle said.

A three-session Sibshops series at the Arc of Howard County concluded last month. The program, which rotates at locations throughout Maryland, will return to Howard County in the fall.

According to Sibshops founder Don Meyer, there are an estimated 4.5 million to 6 million disabled Americans, many of whom have at least one sibling. "There are literally millions of sibs out there," said Meyer, a native of the Washington area. He directs the Sibling Support Project out of the University of Washington and has been running Sibshops for 25 years.

"These brothers and sisters are going to be in the lives of their sibs longer than anyone will ... even moms and dads," he said, but support services tend to focus on parents, leaving siblings out.

"A lot of these kids get lost in the shuffle of daily life," said Addison Beck, Sibshops coordinator for Mount Washington Pediatric Hospital in Baltimore. "Their parents have to attend to the needs" of the disabled sibling, she said.

Sibshops is designed "for [siblings] to come and have a good time and to build a support group with kids who know exactly what it's like and what they're going through," Beck said.

At the recent Saturday workshop, William and seven other children, ages 5 to 7, gathered on the floor around a tower of blocks. Facilitator Tiffany Kaminsky called the blocks a "feelings tower."

"Does anybody know what a feeling is?" asked Kaminsky, a recreation therapist at Mount Washington Pediatric Hospital. "We're going to take one [block] off and we're going to tell about a time we felt mad."

Jovan Brooks, 6, from Upper Marlboro, pulled out a block and said that he felt angry when his 10-year-old brother, who has cerebral palsy, "was getting all the attention."

Jovan's mother, Yolanda Brooks, said Sibshops "opens a door for discussion in a nonthreatening way. ... I wanted to make sure that he had a forum where he could voice [concerns] without feeling that he was being judged."

Beck explained that activities like the feelings tower are "not therapy, but it's therapeutic in that we offer activities that allow them to open up and share their feelings with each other about having a sibling with special needs. ... It lets them know that they're not alone. They're not the only sibling out there who has a special-needs brother or sister."

Meyer pointed out that staying connected with other siblings is important for these children as they become adults.

"If we support sibs as they grow up, everybody's going to benefit," he said. "We increase the chances that they will remain lovingly involved in the lives of their [disabled] sibs when their parents are no longer around."

Mount Washington Pediatric Hospital, the Abilities Network and local organizations fund Sibshops sessions. The fee varies by location. At the Arc of Howard County, families paid $20 for supplies. Classes last about two hours for 4- to 7-year-olds, and four hours for 8- to 13-year-olds.

Sessions typically include a meeting during which parents get an overview of the program. "Some of these kids feel that they're afraid to talk. They're afraid of creating an extra burden in their [parents'] lives," Beck said. "We talk to the parents about that -- how to encourage communication."

Engle said that the program has helped William open up to her. "He talks to me now about his brother's disability. He asks me things lately, like `What does it mean to have Down syndrome?' and `When he grows up, will it go away?'"

Engle said talking with children in a similar situation "allows him to come back and feel like he can ask me questions."

William said, "I don't really talk about my feelings," at home. "We do it when I'm here" at Sibshops.

Information: 800-999-9442, Ext. 5169, or

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