The Northern Utah Down Syndrome Foundation recently honored the CPD’s own Sherry Joy for her work in behalf of the families of children with Down syndrome. The award marked her record as an advocate over the past 20 years, starting when she co-founded an organization for parents. It began operating as a support group from the Up to 3 Early Intervention program.
“I had families with Down syndrome who were feeling alone out there,” Joy said. “Our goal was just to give them a chance to have support and get together and not feel like they were all alone.”
Families met while their children played. Eventually the families wanted organized activities every month, so they started planning three large ones a year, while Joy continued lining up the rest. The group looped in Common Ground in Logan in order to offer some outdoor adventures. When that started, Joy said, fathers became more involved. Families did more and more of the planning.
Maria Leishman, the Cache and Boxelder Community Leader, has known Joy for 10 years. “We were told there was a little play group,” she said. “It was in the old building that they used to do the [Up to 3] preschool in.” They would come, Joy brought treats, moms would chat.
The current Cache/Box Elder community group of the Utah Down Syndrome Foundation grew out of those efforts. What started as a play group for toddlers continued serving the children and their families as they grew; people from Box Elder and Rich counties joined the members from Cache; and leadership shifted away from the Center for Persons with Disabilities at Utah State University. (Up to 3 is part of the CPD.) The group began organizing their annual Buddy Walks. The foundation, as it stands now, has been operating in northern Utah for about 10 years.
Joy remained very involved, letting Up to 3 families know about the organization. She recruited volunteers from the Interdisciplinary Disability Awareness and Service Learning class, as well as workers from Up to 3 and people from local churches (all denominations). “I still send out flyers to the younger kids in our program and get volunteers to help with their activities,” she said. She also works to draw in Spanish-speaking parents.
The group remains a place where parents can relax and do the same things any parent would do. “Whether [parents of children with Down syndrome] think they do or they don’t, they still have their guard up when they’re out and about,” Leishman said. The foundation gives them a chance to relax among other parents who understand the issues they face. They’re also able to gather information from other parents who have been there: on heart conditions or hearing aids or glasses.
“I think it’s also great for the siblings,” Leishman said. For her, it’s important that both the children with Down syndrome and their families can have a good time.
Like a good mentor, Joy has watched the association grow up and become independent. When Leishman handed her a painting and recognized her for her work during the recent Buddy Walk, it was a happy surprise.
After two decades of work, it’s good to know the families of children with Down syndrome no longer feel so alone.
Tags: family support