Friday, 20 July 2012

A drink's too wet without one

I had my third Williams Syndrome Foundation meeting this week. And unlike the other two, nothing untoward happened! I didn't walk in on anyone in the loo, my skirt didn't blow up around my ears, and I even managed to conduct myself with a little decorum (not too much as I am an Essex girl after all!).

Putting the actual business of these meetings aside, I find them very interesting as whilst K & I are just starting out on our journey with E and what it means for him to have Williams Syndrome, a number of people around the table have been dealing with it for years. I learn a lot about what I can expect in the future and pick up handy hints and tips on how to manage any issues when they arise.

I wanted to share one of the stories I heard yesterday that left me chuckling and also admiring the lengths that parents will go to for their children.

As background, people with Williams Syndrome tend to take a long time to get to grips with certain food tastes and textures. Once they find something they like, they stick to it - sometimes to the detriment of all other food. One Dad was talking about how his son had  fixated on Rich Tea biscuits. The boy quite literally ate them by the dozen and they were practically all he ate. One day, to the boy's horror, McVitie's tweaked the recipe (you or I probably wouldn't have noticed, but WS people have very strong senses) and he decided he didn't like them anymore. He was still refusing other food though. So the Dad worked his way through a chain of people at McVities, until he reached the Chairman, to whom he told his predicament. The Chairman rallyed well and the next thing the Dad knew McVities had sent him a load of their old stock so his son could continue enjoying the taste!

This particular Dad is a great source of information to a number of us and yesterday he reminded me that as E is unable to fight for himself, K & I need to do it for him. Not just the big battles - the little ones as well so that E understands that he's entitled to everything that anyone else is entitled to.

Good words of wisdom. So back to that DLA form then...


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