On a day when there was no school, I took the kids to the YMCA to play basketball while I worked out. Cameron, our newest community worker and also a gift from God, was with us. It was her first time experiencing the YMCA with Ben and his celebrity status. It was also her first time seeing him throw a tantrum. When it came time to leave, Ben decided he did not want to leave. He successfully threw himself on the floor and refused to be lifted into his walker. At almost 65 lbs, he can decline to move his body, and we have to oblige. I was frustrated with him. The other kids were waiting outside, and we needed to be somewhere else soon. I told Ben we were leaving and I watched hidden, behind a column as he pulled himself into a chair and sat very nicely. He did not care one iota that his family had left. At this point my frustration subsided and I realized he wanted something and was determined to get it. I took out the NOVA Chat and quickly plugged in a few feelings buttons. When 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.