Fragile X. Fragile what? A genetic counselor called us with our son’s test results and told us the he had Fragile X Syndrome. That comment was followed by a long list of things that he would never accomplish nor understand. He was only 3½ years old, our daughter was just born, and we were devastated. A mutation of the Fragile X gene is the most common inherited cause of cognitive impairment and autism. His life is impacted by a broad spectrum of emotional and behavioral involvements including autistic challenges, high anxiety, hyperactivity, avoidance of eye contact, attention deficits, speech problems, sensory issues, seizures and more.
He was always a very happy child and prior to his diagnosis we tried to ignore some of his idiosyncrasies – there is something very powerful about denial. Yet, denial did not serve us well. We felt completely alone. We eventually accepted our situation and began working together as a team. We devoted a lot of time to learning more about Fragile X. We made new friends and other relationships went by the wayside. We knew we needed to connect with others to help us navigate our new world.
We started looking locally for support and found Vermont Family Network (VFN). Jan Hancock was our first contact at VFN and she was very supportive and reassuring; she helped us see the many ways that VFN could help guide us and support us as we settled into our new life with a family member who requires constant support. Through our early connections with VFN we learned how to become better advocates and share our story and our needs with others in the community, at the state level, and at the federal level. In addition to working with others who have Fragile X, we to advocate for others who are also in need of support. VFN encouraged us to reach out and share our story with students involved in the University of Vermont Family Faculty program (including medical, nursing, special education, health science, and counseling students). We participated in the Vermont Leadership Series and gained more ideas, made more connections, and grew to become better advocates for those with uncommon needs. One of us (Lanie) now serves on VFN Board of Directors. We both coordinate the Vermont Fragile X Community Support Network with another family within Vermont with Fragile X in their lives. Our involvement with the National Fragile X Foundation allows us to feel more hopeful with our lives and comfortable engaging with others. Our neurotypical daughter is involved with Sibshops through VFN and has become an advocate for others who have challenges. Her compassionate nature continues to grow as she watches us work with others and devote our time to requests and offers that come to us through VFN.
It was the early and ongoing connections with VFN that allowed us to develop more clarity about our role, aspirations, and future. One of the many unintentional, yet fantastic opportunities, that was presented because of Fragile X, was the opportunity to meet wonderful people through VFN. We are comforted knowing that our future challenges will be helped with the continued support of this community of friends.
– Marin, Ryan, Lanie and Leslie Kanat
Vermont Family Network Annual Report 2016