Over the past few weeks, Ben has had testing, evaluations, IEP (Individual Education Plan) and progress meetings to either determine his developmental level or discuss improvements he has made in a specified time period. I have been thrilled with the progress he has made and the new goals set for him. The psychological tests I have completed feel strange to answer because so many items do not relate to Ben because he does not talk or have typical physical abilities. The questions do not seem to apply to him. But he needs these tests in order to receive aide, so I complete them and hope for the best. Testing and evaluating are all part of life - and in truth, I like to have specific documentation outlining goals and progress. But there are other times when Ben has blown me away with things he has done that are not measured on a Lickert scale or answered in a question on a test. Those are the times when I give Ben extra credit. At 1:30am, Ben woke up for a drink. As I was sitting
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.