While I was making pizza for dinner, Ben crawled to the dining room and sat in his chair. This is his way of communicating, "I am hungry." I enlisted Sean's help in giving Ben a snack so I could finish cooking. Before I knew it, Sean had the NOVA Chat and was asking Ben, "YES" or "NO" to the question, "Do you want more crackers?" Ben could not stop laughing as Sean took out the device and found the right pages. He was getting a kick out of his brother using the NOVA Chat. In the end, I helped a bit and Ben answered "YES". He finished the crackers and ate his dinner too. Later that night, I complimented Sean on the help and attention he has been giving Ben lately. His response, "I want Ben to think."
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.