We spent some impromptu time with one of my friend's boys a few weeks ago at the USNWC . Our boys did not know each other, but they made friends quickly and were running around and having fun before we knew it. My friend's oldest son who is 11 years old came over to Ben several times. His approach was caring and open. I showed him Ben's NOVA Chat . He quickly understood how it worked and asked if he could make a button. With little help and certainly no input from me on what it needed to say, he added a button that said, "You are a good frend." I was shocked and warmed by this child's thoughtful and loving way. Not wanting to shed tears at the whitewater center in front of this boy (and scare him off), I explained that this was so helpful because we wanted Ben to have conversations with his friends and family. This was a great start to that, and of course, a lot more too.
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.