Sean is five years old and his awareness about Ben's condition is growing. His curious questions, frustration with other people's questions and then his answers to others' questions show that he is experiencing emotional and intellectual turmoil. Sean had expressed to me that his friends at school asked a lot of questions about Ben, and he was annoyed with the questions. Not in answer to Sean's concern (I did not have the wherewith all to plan this), I took Ben to Sean's classroom for lunch. The children stared at Ben, and Ben did not help the situation because he was overly excited to be there and was making so much noise. It is a Montessori school so meals are eaten in silence so Ben's sounds were even more pronounced in the very quiet atmosphere. After I realized the kids did not know what to make of Ben and were perhaps a little scared, I asked the teacher if I could formally introduce him to the class and answer their questions. I was not ready for so
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.