I had an interesting experience yesterday. Two other board members (Fragile X Association of Washington State) and I went to the Center for Human Development and Disability (CHDD) at the University of Washington. We met with Dr. Sara Webb, Research Assistant Professor of Psychiatry and Behavioral Sciences and a Research Affiliate at CHDD. She, along with her research team, are conducting research on social processing in individuals with fragile X or autism which will allow them to examine differences in social skills and brain activity. Specifically they are looking at eye gaze or eye aversion. Phil definitely has it, even at home or in a comfortable situation. I’ve noticed that sometimes when Clark is introduced to a new person his eyes are looking down or to the side but most of the time he has good eye contact.
Sara and her team (seven total) were there to learn about what to expect from individuals with fragile X since they had mostly been working with individuals with autism. For over an hour they asked the three of us specific questions about our children, what do they like to talk about, will they be comfortable going into a room without you, do they know they have a disability, etc. Their questions were good and thought provoking and allowed me the opportunity to talk specifically about two of my kids. Cathy, Jackie and I laughed and shared stories while I got to know more about their sons. I felt such a camaraderie and appreciation for them. Our children may have differences even within the fragile X spectrum but there is much that is similar. And though our children may have a disability life is good and there is joy and contentment.
Now it is time for me to go check suitcases. We are going on a short vacation which requires me to inspect items going into Clark’s and Philip’s suitcases. They tend to over pack, taking 20 pairs of underwear, ten pairs of dirty socks and every tee shirt they own whether they wear them or not. Sometimes there are a number of books (because that’s what I take) even though they can’t read. When I get through their piles will be reduced substantially.