As Ben got on the bus this morning, the bus monitor told me that they had a bit of a problem with Ben. Last week, he took off his chest harness and tried to get out of his chair. Not taken by surprise by Ben's antics, it took me about a minute to think of a possible cause and solution: Ben sits alone at the very back of the bus in his Convaid Chair which is strapped into a special system for wheelchairs. He probably wanted to be in a regular bus seat with his friends. Ben is quite the popular man. His friends call his name as soon as the bus rounds the corner of our street. There are many wheelchair positions on the bus, but Ben's spot has been closest to the ramp which is 20 feet away from the action. I recommended that the bus monitor strap Ben into one of the wheelchair spaces closest to his friends. As I said this, Ben gave me a smile. Ideally Ben would sit in a regular seat with a special 5 point safety harness, but that would mean a bus monitor helping him walk up
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.