When I pick Ben up from school, usually one of the staff bring him to the office. Today, they were short-handed and asked if I would walk down to the classroom to get him. As I turned the corner, I saw his classmates lined up on the colored tile, and Ben on the opposite side turned around in his chair, not listening to directions. The teacher was congratulating the class on lining up well and sweetly admonishing Ben for trying to get the attention of one of his friends. Ben heard my voice and realized I was there, and he reluctantly tore himself from looking at his friend, a little girl he has been sweet on for a few years. He wore the biggest smile on his face. As we left, he tried to touch one friend who quickly told on him, in a big sisterly sort of way. Another long-time classmate reached for a hug to say goodbye. There was a chorus of, " Bye Ben " from the other children. All the while, Ben was smiling, very happy to be around his gang of friends. Made my day - we
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.