Tuesday, March 1, 2011

Our Annual Fragile X Conference

Why is it that sometimes it is so hard to organize your thoughts to put on paper and so you keep procrastinating? Such has been the case for me for the past few days. We (Fragile X Association of Washington State) had a very successful annual fragile X conference on Saturday and there is much I want to share concerning two amazing sons. Phil’s excitement for the conference was evident many weeks ago. Clark wasn’t sure he wanted to go because he remembered the seizures he had at last year’s conference. He had had a few seizures recently so I was pretty sure he would be okay and he was. I had boxes of things to take—books, pamphlets, pictures, videos, items for the continental breakfast, banner, large poster, and more. Clark and Phil carried everything downstairs in our house, put it all in the back of the van, hauled it in at Children’s where the conference was held, helped set up, and then at the end of the day took everything down, put it in the back of the van, took it into our house and upstairs. Now it is up to me to get it all put away. They passed out papers to attendees and showed families with young children what adults with fragile X look like and how they behave. I sat in the front row since I was introducing our keynote speaker, Marcia Braden*, so Phil sat there also, at least for part of the time. He was typical Phil—up, down, up down. Clark preferred sitting in back with his father. At the end of the day I asked Phil what he liked best. “Lunch!” he answered with a smile.

*"Dr. Braden is the most experienced psychologist in the field of Fragile X that I know. She has seen patients for over 20 years and her behavioral and academic programs have made a wonderful difference for the children she treats.” Dr. Randi Hagerman, M.D. – Medical Director of the M.I.N.D. Institute (She was our keynote speaker last year.)

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