Our family worked with an organization that provides a fabulous service for children with special needs and their families. Once we were involved directly with them, I noticed that they describe each child served, by their disease or disorder. The public profile was 90% about the child's affliction. When I saw Ben's profile, I was really sad. He was listed as Epileptic with an Unknown Genetic Disorder. An Internet generated description of Epilepsy was included. A photo of Ben, his age and hometown were also listed. The many people who looked at the website would not see Ben as a person who likes to swim, play with his brothers, be outdoors and watch Bob the Builder. They would see a poor child who is handicapped and needs help. I emailed our agency contact and suggested they add some other facts about each child - what is their favorite food, activity, movie, book, etc. The questions and answers would depend on the child's development, but it would give a more rounded vie
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.