Lately when pushing Ben in his wheelchair, people I know, say hello to me and not to Ben. And if you are thinking, they might be saying hello to both of us, think again. They are using the words, "Hi Vanessa." And yes, they know Ben's name. It is easy to depersonalize a situation when someone is in a device that is passive, like a stroller or wheelchair. I do believe that if Ben was in his walker, he'd be acknowledged. I have not figured out a diplomatic way to handle this yet, but I will. If you have a suggestion, feel free to send it my way.
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.