Last week, families who participated in Shriver Center health promotion studies noted good health, making friends and advising research as some of the benefits. This week, we’ll focus on the Foundations of Learning study, a series of five studies that develop or improve educational procedures for children and teens with autism spectrum disorders, intellectual disabilities or Down Syndrome.
I recently spoke with Steve Trudeau, the father of five including Jacob, now age 16, and Ethan, age 13, who reflected on getting involved in Shriver Center research. Jacob has Down Syndrome and Ethan is typically developing; both participated in the Foundations study.
Paying it forward
When it comes to understanding the needs of people with Down Syndrome (DS), Steve had always wanted to give back noting the “long line of families” who had gone before his. He hadn’t been aware of any DS studies prior to Foundations.
“It seemed like a great way for researchers to learn more about it. It was a scientific way to help kids like Jacob in the future, and that’s what we’re all about.” He mentioned that forty years ago people knew very little about the disability, but recent studies have helped to improve misperceptions to the benefit of children with DS and their families.
It’s easy to do
Steve described a typical study session. “It was a two-year study and we came about every other month. The session only took one hour – not six, as you might think.” By working with their Shriver Center research assistant (also named Steve), the Trudeaus were able to fit the time into their schedule.
“Steve bent over backwards for us – he was fantastic. We didn’t have to scramble. It was an easy ‘in and out’.”
Moreover, the kids looked forward to it. “It was fun for them to match faces and shapes on the computer; it was a game for them.”
Seeing the Shriver Center from the inside
While the boys played computer games, Steve would walk around the Shriver Center looking at the research posters and other information hanging on the walls. “I didn’t know about all the work being done at the Shriver Center before…it warmed my heart.”
Anticipating the findings
Lastly, Steve commented on looking forward to the study findings knowing his family contributed to the outcomes. “I can’t wait to see the results. If we have helped children in the future by participating now, it was well worth it.”
We’ll complete our four-part series on the benefits of getting involved in Shriver Center research next week when we’ll look at our studies dedicated to attention, expression and autism. Hope you’ll join me then!
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.
