Early one morning, I found Ben sitting on top of the tray to his Rifton Hi-Lo Activity chair. Everyone was sleeping so there were no witnesses to this triumphant climb. Most of us were dumbfounded by this accomplishment. Often, I wish we had a "Benny Cam" to catch Ben's crazy antics and ninja-like moves on video. A person close to Ben was sure Ryan was playing a practical joke, and put Ben up there for me to find. I assured this person that my snoring husband was just as surprised as me. If not for my own ninja like reflexes with the camera, no one would have believed this story. My being believed superseded my worry for Ben falling. After some investigation, it became obvious that Ben had searched the fridge for food, left unwanted zucchini bread on the floor and when he did not find what he wanted, decided to wait in the dining room for someone to bring food. Ben has waited in the dining room numerous times, but always in a regular chair. He has been able to get
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.