When my son was three, he saw a psychologist for a consultation. She told me about a family who had a 27 year old daughter with Down Syndrome, living at home. After a discussion with the family and some observation, she determined that the daughter could be doing about 30% more on her own. At the time, I took the story at face value – a therapist sharing a story about another family to try to break the ice, make me feel comfortable. After the session, the psychologist’s words kept coming back to me. Was the story a gentle way of saying that my son too, could be 30% more independent? My mom shared a story with me several years ago about how my aunt asked about her parenting philosophy. My mother had responded that from the moment a child is born, it is a parent’s responsibility to help that child to succeed on their own. This comment has stuck with me. More than a year ago, one of my son’s teachers asked me what I saw Ben doing in the future. I was dumbfounded - he was 4 ½ at the
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.