Growing up with a sibling with special needs has its challenges. A special needs child can take up a lot of the family's available time, resources, and attention. And in many cases, a child may be the only person in their class, or even in their school, with a sister or brother who is "different."
It can all add up to some difficult and complicated feelings for a typical developing sibling, feelings they may not know how to express or that they are even allowed to express. That's where
SibShops come in.
SibShops are workshops devoted to assisting the siblings of special needs children. Developed and based in Seattle, the SibShop curriculums is used in all 50 states in the U.S., as well as Canada, England, Ireland, Iceland, Japan, New Zealand, Guatemala, Turkey, and Argentina.
During a SibShop, kids (generally elementary-school age) talk about their family and their relationship with their sibling in a safe, caring and fun environment.
The Center for Exceptional Families, a program at Oakwood Hospital, runs SibShops every other month for the diverse group of families they serve. Events typically include an activity like a craft or skit, that is designed to get the kids talking about their relationship with their sibling. It's not therapy, says Michelle O'Connor Teklinski, a social worker who facilitates the groups for Oakwood, but it does offer the kids some much-needed support.
"We talk about the good and not-so-good things about being a sib of a special needs child," says O'Conner-Teklinski. "We talk about the common joys and concerns that these kids have and problem-solve situations."
Everything that happens at a SibShop, from kids decorating their own name-tags to customizing their own snack, is meant to reinforce their individuality and creativity. It's about showing they are not defined by their sibling.
And while the focus is on the child's individual identity separate from their sibling, it's also about connecting them with children who have had similar experiences. This way the child understands that there are kids that share their concerns about having a special needs brother or sister - everything from fear of the unknown to a emotions that are akin to survivor's guilt.
"They understand they aren't alone and that there are other kids having very similar experiences," says O'Connor-Teklinski.
With these families, the normal tumultuous nature of the sibling bond can be cranked up to 11; for example, favorite toys get broken by the special needs sibling, or parents need to concentrate a great deal of their attention on their sibling's needs. SibShops allow the typical siblings to talk about these things in a safe place.
That was very much the case for Sarah Peterson, who participated in SibShops at the
Macomb-Oakland Regional Center (MORC) from its very inception and continued to help out as a teen. Now, as an adult, Peterson is pursuing a graduate certificate at Oakland University in autism spectrum disorders. Her brother has autism, and the Sib Shops offered her a place to be understood.
"It helped to be somewhere where all the focus wasn't on the sibling constantly," Peterson says. "You have time to express your thoughts and who you are."
There are other ways that families of special-needs children can enjoy family time. The Center for Exceptional Families hosts a family fun day every year with live entertainment, bounce houses and all kinds of other fun, and also have a large-scale toy donation drive for families who are struggling financially. There are other special events throughout the year like tickets to sporting events, and there's also a volunteer tutoring program for siblings.
"We know that parents taking care of children with special needs simply have less time to help with homework," says Tammy Morris, clinical program manager at the Center for Exceptional Families.
They program will also let typically developing children sit in on their sibling's occupational, speech or physical therapy and participate in games. The staff makes it a point to get to know the siblings and keep up with their accomplishments, Morris says.
Of course, having a family member with a disability doesn't just affect the immediate family. At MORC, facilitators allow cousins or friends to come to the SibShop along with the typically developing sibling. It would not only makes the child feel more comfortable, but their companion ends up learning about the challenges and triumphs associated with having a family member with disabilities.
"It opened up the world and helped with acceptance," says Julie Frei, a social worker and co-facilitator of MORC's SibShops program, which is currently on hiatus.
What seems to have touched both facilitators noted is how loving and loyal the typical children tend to be toward their sibling with special needs. They all feel a strong need to protect their siblings from teasing or rude behavior.
"They would often stick up for their brothers and sisters – it's quite inspiring," says Frei.
At The Center for Exceptional Families, facilitators will ask the children if they could go back in time and change their sister or brother to someone who was typically developing. And every single time, O'Connor-Teklinksi says, every single kid would say no.
"They'd say ‘our siblings are unique, and we love them just they way they are.' It's so powerful to hear those things from the kids," she says.