Last year in Kindergarten, Ben was part of a pilot program for a literacy study at the University of North Carolina at Charlotte . His teacher was given specially adapted books to read with her children. The books were enhanced with raised lettering for the children to touch and objects for the children to hold. At points throughout the book, the teacher would ask a question about the page she had just read and the child would choose from pictures or objects inserted in the book to answer the question. One book Ben read talked about rain. The adapted book came with a small spray bottle and at that point in the book, the reader sprayed water into the air. Ben completed the program in just a few months, quicker than expected. Obviously, he was motivated by the methods they used. My sister, a creative and can-do person, decided to make a book like this for Ben, using one of his favorites from the Bob the Builder collection. Using the one from school as a model, she tore the book ap
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.