Jig-saw puzzles: fascinating, absorbing, time-wasting, good for fine motor-skills, they follow a pattern or a picture which can often be seen on the box, but many people, including our own special lot, can solve a puzzle without looking at the picture. But where to begin? Pieces may be scattered all over the table, upside down, some in little piles according to their straight edges, colours, the hunt for the corners. It looks so confusing! I've watched some of our kids (of all ages) with PWS as they concentrate on the detail, looking intently at the cut of the piece, its colour and shape, and automatically find where it fits. It's amazing how they do it, and if you watch carefully there is a kind of rhythm - they pick up a piece, examine it, absorb the information it portrays and either put it exactly where it belongs, or put it carefully down to be used at another time.
Recently, I watched a trail of emails that had come into IPWSO starting with Dr Kate Woodcock from Birmingham who had gone to Bejing as a Marie Curie Postdoctoral Research Fellow, wanting to research PWS in China. We know the difficulty of establishing a PWS Association there (gatherings and groups of people are not encouraged), and we know that the practice of one-child families where children with disabilities are not welcomed. So the jigsaw pieces are scattered, most are still upside-down, and there don't seem to be all the corner pieces. Where to start?
One corner piece comes into view - a clinical geneticist, enthusiastic to try to do more to help the families of newborns. Another corner piece and pieces that fit: he is also a paediatrician so he gets to meet some of the children with PWS.
A stumbling block: he doesn't communicate in English, so some more searching among the pieces of the jigsaw and up comes Taiwan, but there are no joining pieces until a piece with IPWSO turns up. Kate makes the connection and Giorgio provides the next piece - the Taiwan PWS Association. More pieces reveal names of professional delegates in Taiwan who provide the language connection, and so the jig-saw starts to be solved. Piece by piece, name by name, country by country.
It's a massive jig-saw, and, thankfully, IPWSO has many of the pieces you might need!
The end of the year is nigh, and many of us will be celebrating our holidays and holy days. May your time with families and those whom you love, be happy and joyous and may the pieces of your jigsaw always fit!
Recently, I watched a trail of emails that had come into IPWSO starting with Dr Kate Woodcock from Birmingham who had gone to Bejing as a Marie Curie Postdoctoral Research Fellow, wanting to research PWS in China. We know the difficulty of establishing a PWS Association there (gatherings and groups of people are not encouraged), and we know that the practice of one-child families where children with disabilities are not welcomed. So the jigsaw pieces are scattered, most are still upside-down, and there don't seem to be all the corner pieces. Where to start?
One corner piece comes into view - a clinical geneticist, enthusiastic to try to do more to help the families of newborns. Another corner piece and pieces that fit: he is also a paediatrician so he gets to meet some of the children with PWS.
A stumbling block: he doesn't communicate in English, so some more searching among the pieces of the jigsaw and up comes Taiwan, but there are no joining pieces until a piece with IPWSO turns up. Kate makes the connection and Giorgio provides the next piece - the Taiwan PWS Association. More pieces reveal names of professional delegates in Taiwan who provide the language connection, and so the jig-saw starts to be solved. Piece by piece, name by name, country by country.
It's a massive jig-saw, and, thankfully, IPWSO has many of the pieces you might need!
The end of the year is nigh, and many of us will be celebrating our holidays and holy days. May your time with families and those whom you love, be happy and joyous and may the pieces of your jigsaw always fit!
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