Finding Resilience Through Reframing: Parents’ Perspectives
As a Dravet parent or caregiver, have you ever thought about the term “reframing?”
Community member Barbara Swoyer recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine. In this piece, Barbara incorporated the thoughts of others in the Dravet community about what reframing means to them, and how it might be helpful, or even not, when caring for a medically complex child.
Barbara and her husband live just outside of Boston, MA. They are the parents of two boys, and their younger son, Jake, has Dravet syndrome with Secondary Mitochondrial Dysfunction. Not diagnosed until age 10, Jake is now in his twenties and lives at home full time with his parents. Barbara has been involved with the epilepsy and special needs community for over two decades as a fundraiser, volunteer, written contributor and advocate. She is a member of the Caregivers of Adults Advisory Group for the Dravet Syndrome Foundation, and is a founding Parent Advisor for Courageous Parents Network.
You can read Barbara\’s perspective in this Decoding Dravet blog post.