Wednesday, September 1, 2010
Annual Fragile X Picnic
I’ve been thinking a lot about the annual state fragile X picnic which was held on Saturday. With about 40 people who came I would consider it a success. One family (grandmother, daughter and her two sons, one of whom is affected) traveled three hours to associate with other fragile X families. I met families who have never come to anything but now feel a need to connect with others who understand what they are dealing with. Just as in the general population there is a wide range of disabilities (and abilities) with those who have fragile X. Yesterday we had verbal and nonverbal boys. Come to think of it there were only boys (and men) with fragile X at the picnic. I know families who have daughters with fragile X but they didn’t come. Many who came were anxious and showed their anxiety in different ways. One had his baseball hat pulled down low while he sat alone and silent in a chair, a nine-year old started crying as soon as he saw the resident big, black dog and cried for most of the two hours he and his family were there. Another hid behind his mother and ate at a distance from most of the attendees. Phil was his normal, noisy self, laughing a lot and thoroughly enjoying the picnic while eating more than his share. Clark was talkative and more than happy to go over the high points of the state softball tournament where their team took the silver.