This month we are pleased to welcome our guest blogger, Elaine Gabovitch, who will share her personal experience as a parent participating in research at the Shriver Center.
The First Time
I remember the first time I signed up my then-10-year-old son for a research study. Combing through local disability listservs to find tips and resources to help him, I came upon a study posting from the Shriver Center about eating and obesity in children with Autism Spectrum Disorders (ASDs). Something about it caught my eye and caused me to call and find out more. What was it about this particular posting that made me act?
Maybe it was because my son was 10 and the timing seemed right. At this age, we had gotten through the earliest, most urgent days of learning about and responding to his disability. We had some things in place that were starting to work. It seemed that we may finally have the time.
Maybe it was because the study was eating habits, something that resonated for us. We had struggled through my son eating little more than chicken nuggets and pizza for many years, suffering through gag reflexes from the smells of certain foods. I worried about how to help him eat better. Answering questions might give me a way to make sense of it all, or at least help research learn enough to help kids like mine in the future.
Maybe it was because I wanted to give back to “the village” of people who had helped us. The researchers at the Shriver Center were not the same professionals who assisted our family in the early days, but there was something about helping them understand this thorny problem that felt right.
Whatever the reason was, something tipped my decision scale and we signed up. And it was interesting, fun, and most importantly, easy to do. But the timing had to be right, and we all had to be ready. Once we were, it was a wonderful experience that I encourage families to try.
Years later, I now work at the Shriver Center and think about research a lot. I see many families getting involved in research as I once did. It is gratifying to see them helping to expand Shriver’s knowledge base through taking part in our studies.
There are many reasons to get involved in Shriver Center research that answer the question, “What’s in it for me?” We’ll start to answer that question next week by looking at the Shriver Center’s health promotion studies, such as the one we participated in all those years ago.
About the author
Elaine is the Director of Family & Community Partnerships at the E.K. Shriver Center and an instructor in the Department of Family Medicine & Community Health of UMass Medical School and Family Faculty for the Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the Shriver Center.