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Showing posts from November, 2017

The Lodger and the pirate

I think the only way to get to know The Lodger and all of his idiosyncrasies is to get to know The Lodger. 

Prader Willi Syndrome (PWS) is complex, extremely complex. 
You think you have an idea of what it is and then WHAM BANG something comes at you unexpectedly. PWS is much more than food. Food is actually the easier thing to manage and inform people about, it's the quirks of behaviour that's the most challenging. 
The food rules are easy to follow; The Lodger can only eat what we give him. He eats five times a day. Nothing extra ever. He must be supervised in food environments. Food is never used as a reward or punishment.
Tick, Tick, Tick, Tick, Tick.
It's the challenges of behaviour associated with PWS that's the hard thing to teach.
Settling into big school was tough on The Lodger, tough on us and more than likely tough on his school team too. There were days were I frantically googled home schooling, I reached out to parents of older kids  with PWS for tips on how they hel…