The Lodger and Us

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things.  Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way.  He then stopped and said “What is Pancake Tuesday?” A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger.  "Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is P...

It's been quiet in the world of The Lodger of late and by quiet I mean so freaking busy there's no time to write about the trials and tribulations of Prader-Willi Syndrome.  I guess it's also easier to write when times are good and when there's time for celebration but I guess if we're to be honest about Prader-Willi Syndrome recently there’s been a few more bad days.  If it's not another disappointing hospital trip where your answers still can't be answered because let's face it they don't know all the answers, it's another hoop to jump through trying to get The Lodger better services in pre school and trying to plan for primary school next year.  And then there's The Lodgers ongoing development and attempts to understand the world around him.  The Lodger is four and the behavioural challenges of PWS are showing through. Possibly due to lack of understanding and still some difficulty  with communication the Lodger is testing...

It's so much more than eating. It's impossible to imagine the feeling towards food that a person with Prader-Willi Syndrome experiences.  But it's a very real thing. It's more than just hunger. It's a feeling that takes over the whole mind. Add the extra complications of stress, anxiety and uncertainty around the next meal and that's when you're getting close to imagining that feeling. The food obsession with PWS is so much more than eating. But as with all symptoms in Prader-Willi Syndrome this can be mild, severe or somewhere is the middle of the spectrum.  It's a relationship with food. It seems to be a consistently spinning wheel in the minds of someone with PWS where food is a consistent thought. The Lodger is becoming more and more obsessed with food everyday. But not in the way you'd think or we expected. His obsessions are far beyond his daily eating schedule.  A lot of his play now resolves around food. He makes te...