Eunice Kennedy Shriver Center

Last week I mentioned that the timing, topic, and desire to “give back” all contributed to our reasons for enrolling in Shriver Center research. This week we learn why families are excited about participating in the health promotion studies at the Shriver Center with their children. As a parent, I was personally thrilled to see exercise and healthy eating becoming a priority for our children and youth through these creative studies.

Learning about healthy nutrition and physical activity

Studies like Health U. have offered youth with intellectual disabilities a curriculum, materials and regular meetings at the Shriver Center to learn about healthy lifestyles through proper nutrition and physical activity. Participants and parents try out positive food choices, portion control, meal preparation and exercise delivered in an accessible, club-like setting. Parents of participants praised Health U. for creating positive changes in their children.

“My daughter Sara looks at physical activity and eating in a whole new way. She has a foundation to build on now, everything from portion sizes and understanding healthy foods better to taking part in track and field,” said one parent named Robin.

Making friends

Physical activity intervention studies like TUFF have been offered to teens at neighborhood YMCA’s. Kids get to work out and make friends locally, while researchers learn what it takes to keep them active and engaged in a community setting.

Helping researchers learn something new

From the TRAC study, teens and their parents describe how they spend their time and wear accelerometers to track their movement for a week. This helps researchers develop a baseline for physical activity so they can set and measure physical activity gains in future studies.

Acting as community advisors

The SPARC study invited parents and physical education professionals to work as advisors to our research team to name, study, and support the design of a physical activity study for teens with ASD. The result was a social YMCA-based walking club using a curriculum, social stories, pedometers, accelerometers and other tools to engage teens and measure their activity in a fun intervention in the community.

Parent advisor Susan Sutherland explains why she became involved. “I definitely used my son as motivation,” she said. “I wanted to make sure he saw that opportunities would be open to him similar to others.” (SPARC will be profiled in the next Shriver Center Spotlight newsletter coming in March).

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.

This week I introduce Mary Blauvelt as a guest blogger

My name is Mary Blauvelt and I have a developmental disability. But because I have a disability, it doesn’t mean I can’t do the things I want to do.

I go to the Minute Man Arc Day Hab and live at Carter house in West Concord. In my spare time I go to ceramics and chorus. In the last musical I was Tiger Lilly, the Indian princess in Peter Pan. I am also a member of a book club and President of the Minuteman Self Advocacy group. I was also in a walking club until it got too cold.

Becoming a Board Advisor

About a year and a half ago I joined the Eunice Kennedy Shriver Advisory Committee. I have a supporter who brings me to the meetings and helps me when I need help. I like the meetings; I like them a lot. I learn about the things they are doing at Shriver.

At one of the meetings I met John, who came to Minute Man to meet my friends and talk about using computers. It was called a focus group and he wanted to know how easy or hard it was for us to use computers and get on websites. I learned a lot. Now I go into the computer lab at Day Hab and am saving to buy my own in the future.

And a Board Director

I am also very proud to be a member of the Minute Man Arc Board of Directors because everyone can’t be on it. I have a mentor, Liz who talks to me about the agenda before the meeting and helps me at the meetings if I need her. It is an honor. We learn about the programs, and talk about how to make things better

Contributing to the community

I think the other board members like hearing what I have to say. I also get to vote which feels good because everyone doesn’t get a chance to vote on certain things. It is a good way to let your voice be heard.

Even if you are a person with a disability, you can still be on a board. No one can turn you down because you have a disability, but you should be prepared. You can go to a training like I did or maybe just try it out and go to a meeting first to see if you like it. Whatever you do, you should know about the different issues facing people with disabilities today.

Tag: Eunice Kennedy Shriver Center

Shriver Center Research Promotes Healthy Children and Youth