Tuesday, August 25, 2009

Fragile X Picnic

It was a warm summer day when we gathered for our (Fragile X Association of Washington State) picnic last Saturday. This annual event gives families an opportunity to associate with other fragile X families. Some have never met another family affected by fragile X and appreciate the opportunity to talk freely about challenges they face and also about the accomplishments. One single mom with two fragile X kids, both teenagers, asked when bedwetting would come to an end and what about puberty, what could she expect. There is a wide range of abilities just as there is in the general population but there are similarities that help parents see that they are not alone; there are others who understand.

Yesterday I went to see a granddaughter take a swimming lesson. The outdoor pool and constant smell of chlorine reminded me of my college years when I taught swimming. My mind wandered back many years to that small outdoor pool in a small town. I thought working at the pool was a perfect summer job. The instructors yesterday seemed to be enjoying their work. I watched mothers sitting together chatting while watching their children in the pool and toddlers who would very quickly take their older sibling’s place. We like to get together with others who understand our situation, what we are going through.

After almost four hours at the picnic it was time to go home. As I drove down the long driveway to leave with Clark and Phil (Paul had another commitment) I saw a mother chasing her teenage son with fragile X down the street. He had thrown off socks and shoes and was moving with speed. Instead of turning right to head home I turned left to try and help. Just as I pulled up alongside of her she had caught up to her son and had good hold of him. I was amazed at how collected she looked. She must have done that before. I smiled as I thought about the times when Phil got angry, got out of the car and proceeded to walk home while he peeled off coat, shirt, belt, shoes, socks. His younger sister, more than once, has gotten out of the car and followed him while gathering clothing. A long walk for him is usually therapeutic and by the time he arrives at home he has settled down. It has been a few years since he has done that and since that younger sister now has her own home I hope he doesn’t try it again.

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