WWW.VIVAT EC.CO.UK 0870 2430 999 Avoiding the Crisis
14/11/2006
Case Study
Prader-Willi Syndrome
Telecare Alliance reprinted with permission from Prader Willi Syndrome association;
www.pwsa.co.uk
Assistive Technology System
by Kate Haggarty
I am the mother of Oliver (PWS) 13, Ella (10) and Bronte (7). I am writing to tell you
about the Assistive Technology System that has recently been installed in our home
and the difference that it has made to our lives.
To start at the beginning - 13 years ago, when Ollie was born and we received the
shattering news that he had PWS. I remember quite clearly amongst the myriad of
emotions that we experienced at the time, a determination that, with the benefit of an
early diagnosis (3 weeks), it would surely be possible to teach Ollie not to take food .
We could train him - we could educate him as he became older about the importance
of not over-eating and if we were disciplined and consistent, then perhaps we might
succeed. Looking back, this seems extremely naive, and no doubt was part of a denial
about Ollie’s condition, but at the time it felt good to have something positive to aim
for - to feel that there was a way forward when we felt so overwhelmed.
It was with a real sense of failure initially then, when about seven years ago I fitted
the first cupboard lock. As Ollie became taller and more physically able it was
becoming increasingly difficult to rely on my vigilance and to trust him not to take
food that he wasn’t allowed. Ollie knew then, as he knows now, why his food intake
must be controlled - he can and does talk knowledgeably about a healthy diet and is
far more informed than many adults! However, the reality is that the obsession is so
innate that all the theorising in the world counts for nought if the opportunity for Ollie
to take food (without being caught!) presents itself. Although there are times when he
will proudly bring me some food that has been left lying around inadvertentl