We had a package arrive in the post this week. I collected it from the man who knocked at the door and, as I turned to come back into the hallway, took the small box out from the large plastic envelope. To protect it, the box had been placed in a sleeve or bag of … Read more
The public face of Williams Syndrome is of hyper-sociable, cocktail-party people. Now if you are a parent or carer for a very youung Williams child, this might seem a little strange to you. Many parents often wonder whether their young children will ever learn to speak at all! The research – and there’s a lot … Read more
If you know anything at all about Williams Syndrome you’ll probably have heard how Williams people are musically gifted. It’s probably more accurate to say that they are obssessed with music though it’s true that many are particularly gifted. Linda, a typical Williams Syndrome adult loves to sing. Her singing voice is as good as … Read more
Since getting her recent genetic diagnosis, a positive FISH test for Williams Syndrome, it’s been a busy few months for myself and Linda. We’ve been to so many hospital appointments, catching up on all the tests and scans that a child would have had over the years but which Linda never received during her youth. … Read more
It’s been a tough weekend. I can’t say quite why but emotions have been high and tempers fraying. Linda, a Williams Syndrome adult, has been pushing at boundaries all round and collecting leaflets with a vengeance. I know this sounds trivial but believe me, pausing at every doorway to collect more paper gets to be … Read more
Linda was visiting a local park with a care worker today. Together they strolled through the gardens and around the lake watching the wildlife as they went. Linda’s bookshelves are groaning under then weight of nature books, particularly many different bird identification books, certainly numbering in double figures. This might be an interesting fact and … Read more
Very few Williams Syndrome adults live independently. Research and longer term studies show a majority spend most or all of their adult lives being supported to various degrees by their families. Linda is no exception. But, as I need to go out and earn some money, during the week we are really fortunate to have … Read more
Linda shows the typical paradox of many Williams Syndrome adults: she knows everyone and has friends on every corner and yet she has no one who really calls her friend. I’ve struggled with this and would love to see her develop a friendship, to want to visit or go visit with someone, to have a … Read more
Linda, like many adults with Williams Syndrome struggled and still struggles with numbers. Yes she can count but does she understand what those numbers mean. Any reading of a list of symptoms for Williams Syndome include poor numeracy skills but what does this mean for real people? If she works really hard Linda can tell … Read more
When Linda lived at home with Mum & Dad, she lived with them all day, every day. She was loved to pieces and given every opportunity they knew how. Since Mom & Dad died, I’ve cared for Linda and three major things have changed. 1) We now have a positive FISH test diagnosis that confirms … Read more