Sara Kruk of Shelburne is making sure her daughter Kayla has access to all the activities children without disabilities have.
Kayla, 11, has the MECP2 gene which is associated with Rett Disorder, a progressive neurologic condition. She is also on the autism spectrum.
“From our perspective, she’s doing great,” Kruk said. “She can walk, talk and dress herself. She goes to school and is involved in every possible sporting activity.”
Last year, Kruk, 47, was appointed to the Governor’s Advisory Council on Special Education. She credits her appointment to a combination of her work experience, the directory she created to help other parents of special need children and her own experience as a parent.
“I’m a pretty optimistic person,” Kruk said. “There are flaws in every system but rather than dwell on them, I want to think about how to fix them.”
In 2015, Kruk founded Kayla’s Directory. She had found that after the age of three, there was period of limbo for children with special needs before they started school.
“There were lots of resources,” she said, “but people didn’t know about them. For instance, there are a lot of adaptive sports programs but parents didn’t necessarily know they existed because there was no central source of information.”
Kayla’s Directory is Kruk’s attempt to create a website listing available resources, mostly those based in Chittenden County, but others that are state-wide or national in scope.
Kayla loves to ski, and Kruk wanted her to learn to skate, but initially she found that the existing programs weren’t designed for special needs children. Now, Kayla’s Directory hosts both skating and running programs, as well as skiing at Cochran’s.
The skating program partners with Full Stride at Cairns Arena and the running program partners with Run Vermont. Kayla’s Directory also collaborates with the Davis Studio in South Burlington for a monthly art program.
Kruk has a Masters in Counseling Psychology from Leslie University and works as an interventionist at Tuttle Middle School in South Burlington. A 10-year resident of Shelburne, she loves the town’s small school system and great sense of community.
Kruk appreciates getting input on her directory from others in the community.
“Families might report a particular restaurant that was great with their kids, so we might include that. We also wanted to include some national programs that people might not be aware of,” she said.
In addition to listing resources, the organization has purchased adaptive equipment. They work with the Flynn Center for the Performing Arts and ECHO, Leahy Center for Lake Champlain to make headphones, strollers and other equipment available for children. They receive money through grants and hold a fundraising event every few years with music and live and silent auctions.
“The biggest thing for me is creating a partnership with local places and getting families supported,” she said. “Their kids may need one-on-one help or just a flexible group.”
She said parents often feel as though they are being judged and the goal of Kayla’s Directory is to eliminate those feelings: “We live in a great community and you have to make connections,” she said. “So much is happening now with inclusion and accessibility. We are in a great place.”