We had two situations occur within a week of of each other that encapsulated five years of experience. They were something like the Cliffs Notes on Ben's story of isolation.
The first happened at a local summer festival. We were just arriving and I caught sigh of a family that we met at the Therapeutic Riding barn. Mom, dad and two boys right about Ben and Kiera's age. Their oldest has CP and uses a wheelchair. It was one of those things that judging from the direction they were moving it was pretty likely that we were in their sight line. Figuring that they just didn't recognise us, I ventured over with Ben to say "hi". While I was reintroducing us, three other families joined the group, each family had a child in a wheelchair. The four other families said hello to each other and just as if an invisible wall fell from the sky, we were shut out. I could actually feel the push. So we stepped back toward the group we were with and there we were, caught in the middle with no where to go. Pushed out of a group Ben often feels more comfortable with yet not able to join in with our group of kids who were tearing in and out of the crowd. He was alone.
The second happened when we were camping. We had just arrived and put up the new camper. Ben and Kiera were so excited and ready to play. They couldn't wait to get on their new scooters. We found a scooter that Ben can balance and take little scooting steps. Very cool, whole other post. So there we were ready to give it a try, we made it past the camper toward the road and Ben stopped dead in his tracks. What he saw were four families of kids racing back and forth on bikes and scooters. Kids as young as Kiera on two wheelers and Razors. He wouldn't budge while he watched them tearing up and down the road. He actually stood stock still for about two minutes (a really long time when you're the mama and the seconds are ticking by as loud as thunder) then stepped off of his scooter. He turned to me and said "Can I go into the camper now please." Unable to make his body work the way he knows that it should and not yet willing to let go and play with us, the ones that don't care. Alone. Again.