Matt Lockwood - AUTHOR
Special attention given to KS siblings
Children with Kleefstra Syndrome often require special attention, but at the 2022 North American Family Conference brothers and sisters of kids with KS had a program just for them called Sib Shop. Sib Shops give kids whose siblings have special needs the opportunity to meet and talk about the good and the challenging parts of their situations.
Jamie Hazlett of Nebraska, whose 10-year-old daughter Evie has KS, became certified to run Sib Shops six years ago, but this was her first. She took the Sib Shop course for her now 15-year-old son, Miles.
“Miles is a great big brother and he’s super, super supportive, but I’ve always worried about him feeling left out or feeling like he can’t share how he really feels with us,” said Hazlett. “And so, I knew that I wanted to facilitate ways for him and other siblings to be connect on stuff like that.”
Thirteen children ages six to 15 years-old attended the Sib Shop. While their parents attended conference sessions, they created name tags with self-drawn pictures of their faces, played musical chairs and did an activity called Dear Aunt Blabby.
“I have letters to a fake advice columnist from kids that have siblings with special needs with different scenarios where they are asked advice on what they should do. For example, my brother makes funny noises in public and sometimes that embarrasses me. I don’t know what to do.”
Hazlett was pleasantly surprised at how positive all the KS siblings were.
“I think we live in a great generation now where these kids have grown up to learn how to accept kids that are different from them and to cohabitate with them. I found that incredibly inspiring and incredibly interesting. I was prepared for negativity, ‘like my sibling embarrasses me, I get picked on and my parents pay a lot more attention to them,’ but it was not like that at all. In fact, they wished other people could see how special their lives are with their siblings. It really touched my heart.”
Feedback from the Shop’s attendees and their parents was unanimously positive.
IDefine Board Chairman Darrick Reed said his six-year-old son, Brady, was excited to share what he learned.
“It really did help him understand why his sister (Brianna) has challenges to work through on a daily basis and how he can be the best brother he can be,” said Reed. “Once back home he told us he was even teaching his camp counselors about KS the following week, so that goes to show the content definitely resonated with him!”
The Sib Shop would not have been possible without Hazlett and the other volunteers who staffed it. Hazlett’s brother and his wife flew in from Nebraska; Justin Kraemer, whose brother Evan with KS passed away; and conference organizer Julie Drake’s nephew, Tim Drake, all helped.
“Now that I have one under my belt, I would love to do a bigger one with a little bit more activity and game playing,” said Hazlett. “But I think we should always include the siblings in some sort of activity to get them involved.”