Spotting a Need, Growing a Resource

Spotting a Need, Growing a Resource
Grace Chang '09

Grace Chang '09 is a political science major and psychology minor from Gaithersburg, Md. An Evans Scholar, she has worked on child welfare and youth advocacy issues and is the founder of Sibshop, a student-run organization that provides peer support workshops for siblings of children with disabilities. She has also worked as a policy intern at Support Center for Child Advocates in Philadelphia. Write to her at gchang1@swarthmore.edu.

In Spring 2008, Grace Chang '09 and Katie Altynova '08 founded Swarthmore Sibshop with the help of a Swarthmore Foundation grant. The student-run organization, recently profiled in The Phoenix, provides peer support workshops for siblings of children with special needs, ages four to 10. Swarthmore Sibshop is partnered with Swarthmore TOPSoccer, a community-based soccer program for young athletes with disabilities, as well as Chester County Sibshops, a sibling-based program in Chester County, PA.

drop cap letter As the sister of three siblings with autism spectrum disorders, I've experienced the struggles and joys of being in a family with children with special needs firsthand. I understand the distress a mother with a newly diagnosed child feels. I know how angry a little boy might be when his parents have to divert attention away from him to his special needs sister.

When I first got to Swarthmore, I actually wanted a break from having to deal with disability issues. But inevitably, I was drawn back; by my sophomore year, I was Swarthmore TOPSoccer's photographer, doubling as a substitute Buddy when TOPS was short.

One day, I was standing on the sidelines on the track of the field house, casually chatting with a parent. As we talked, a sibling of one of the TOPS athletes kept interrupting our conversation, making silly faces, jumping up and down, trying to get his father's attention — all the signs of a bored kid. A few minutes later, as I was snapping more photographs, I had this thought — why not create a student organization dedicated to siblings? Within moments, I knew I had to make this idea happen.

"I think Sibshop is a great way for the kids to interact with each other," says one parent. "With the guidance of the college students, all of the children get the opportunity to talk and play with many different children who each get to feel like it was all about them [as opposed to the attention being focused on their special sibling]. My kids look forward to it every week!"

Sibshop, as an organization, came together organically. Within the mental health community, siblings of children with special needs are often neglected, even though they have their own issues and concerns. There is rightfully a lot of work being done for children with special needs, and also some action around parents of those kids — yet almost nothing for siblings in those same families.

I knew that there was a national network of Sibshops, designed by Don Meyer, centered on this concept. Also, I had heard a lot about how to jump-start a student organization; the founders of Swarthmore TOPSoccer, Rhiannon Graybill '06 and Ryan Kuker ‘06, were both fellow Evans Scholars.

"I like running Sibshop because I get to see the development of children from the beginning to the end of the session," says coordinator Kristin Caldwell '09. "Being a coordinator allows me to have more involvement in broadening the children's horizons and making sure they have a good time and feel great about who they are. Among the best rewards are seeing the children's perspectives on situations with no 'right' answer, and the positive feedback we receive from their parents."

So with that knowledge, I started planning a student version of Sibshop in Fall 2008 while I was abroad. It was a little stressful because I was enrolled in an intensive comparative program that had me traveling across cities in developing countries every few weeks. I teamed up with Katie Altynova '08 and we adapted the national model to fit Swarthmore's needs. Our goal was to create a safe, fun space for siblings of children with special needs using games and activities that gave these siblings a chance to talk about their experiences while also having some fun. In Spring 2008, we received seed funding from the Swarthmore Foundation and a lot of start-up advice from Deb Kardon-Brown, the Lang Center's assistant director for student programs, and Assistant Dean and Gender Education Adviser Karen Henry '88.

Our first semester, we partnered with Swarthmore TOPSoccer and worked with the siblings of TOPSoccer athletes. We made our program the same time and in the same space as TOPS in order to maximize convenience for the families. We recently concluded our second semester and are about to start our next one. We've been very successful and have expanded to include several families from outside the TOPS community — although some of our new families have actually then gone on to join TOPSoccer!

"What a great idea — a program for siblings of children with special needs," another parent says. "A special thanks to everyone who made it possible for my child to feel important and that she is not alone in her struggles."

Growing Swarthmore Sibshop has been an amazing experience. On one level, it is very gratifying to watch our siblings gradually learn how to articulate their experiences as a member of a family with special needs. Many siblings have never learned how to talk about their special needs siblings. Few have the opportunity to talk with other kids who also have siblings with special needs, and almost none realize they are not alone in their experiences, difficult or otherwise.

Also, it's great just to play with our siblings and see them just be kids. Sometimes when you have a sibling with special needs, you take on a little more responsibility than most kids and don't get to kick back and just play as often as you should. Similarly, my fellow coordinators are incredibly energetic and amazingly resourceful and I'm always touched when a parent thanks me for keeping Sibshop going. I'm proud of how Swarthmore Sibshop has grown up and I am happy it has become a permanent fixture of the Swarthmore community.