I have so much to write, but I think I have been afraid that if I do put it down, it will be real and perhaps too overwhelming for me to deal with right now. It has been almost 2 months since Ben has started using the NOVA Chat 10 , a communication device on an Android platform. Like an iPad, but different. The results we are seeing from Ben using the device have been incredible. He is making choices about his meals, activities and location. Having these options and ability to choose must be liberating for him. When we decided to order it for him, this independence was all I had in mind. Then, a few weeks before Christmas, Ben did a curious thing: using his hands and feet, he put down his two foot plates on his wheelchair deliberately. From then on, I asked him to do the same thing and he would. This piece of communication resulting in an action started me thinking. We added reading comprehension questions to the device. We read a children's board book and then asked Ben a
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.