Sunday, October 12, 2014
Jonathan Isley joined hands with 14 school-aged, adolescent and adult siblings of people with Down syndrome at the Carolinas Down Syndrome Conference.
In a tight-knit circle, the siblings worked together to come undone. They weaved in and around, walking under arms and climbing over legs. Within a few minutes, bodies once in limbo are finally upright and standing in a larger circle, arms stretched out wide, still holding hands. Still connected.
The exercise was an icebreaker to help them become more comfortable with each other. However, there was already an air of comfort from their shared experience of living with a sibling with Down syndrome. The exercise exemplified the extraordinary challenges and rewards they shared.
The conference was hosted by the Down Syndrome Association of Greater Charlotte at Hilton Charlotte University Place on Sept. 27.
“It’s great being here with a group of people like me,” said Isley, who lives in Myers Park. “I wish I’d had this growing up. You can’t just go to high school and talk about the problems you’re facing because most people just don’t understand.”
Feelings, facts about Down syndrome and sibling roles were the topics addressed by Dr. Brian Skotko and Susan Levine during the Brothers and Sisters Workshop. The sibling track was one of four options at the conference, which also included tracks for educators, parents and teens and adults with Down syndrome.
Skotko is a geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital. He also has a sister, Kristin, who has Down syndrome.
“I am continually humbled by the profound questions from these young minds; questions asked out of love for their brothers and sisters, having shared the same experiences as them, it feels good to help them realize that they are not alone,” he said.
Susan Levine is a social worker from New Jersey who has conducted programs for parents and siblings of children with differing abilities for 30 years. Skotko and Levine have worked together leading workshops for siblings of people with Down syndrome for 10 years.
“These workshops help turn unresolved emotions into advocacy,” Levine said.
After playing a Down syndrome-themed version of Jeopardy, the siblings quickly opened up about their feelings. Emotions ranged from anger and frustration to embarrassment and guilt to joy, happiness, peace and love.
Heads shook in unison as each person shared stories: grocery store meltdowns, lack of privacy and lack of personal attention from their parents.
“Since I’ve moved out of my parents’ house, I have a different relationship with my brother Matty,” Isley said. “We’ve always been close, but we each have our own space now. I’d forgotten all the bad things until these stories brought back memories. I guess that’s a good thing – it gets better.”
While they face extraordinary challenges, they also have an extraordinary opportunity to learn.
“Everyone has something to teach, even a 3-year-old with Down syndrome,” Skotko said.
Thamara Lynch, 20, from Mooresville said, “I have a special relationship with my brother. He makes me a better person.”
Debbie Skinner, 52, said her brother Michael was the reason she decided to become a special needs teacher. She teaches at Iron Station Elementary School in Lincoln County.
“I feel lucky to have him in my life,” she said.
Isley, who works as Senior Coordinator of Operations for NASCAR Productions became a DSAGC board member last October. He’s the first sibling on the board. He said he will use ideas from the workshop to create a sibling group within DSAGC, along with Lynch and Skinner.
“I’m hungry to help and share my experiences, so others don’t have to feel alone,” he said.