The Lodger and Us

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 ol...

The Lodger has started primary school. I'll repeat that. The Lodger has started primary school.  If I wasn't the person helping him put on his school uniform, getting his lunch ready, bringing him to school and answering his approximately 10,000 questions on the topic I wouldn't believe it. How can five years go by so fast? On the first day of school, we gathered in the PE hall to wait for the Teacher to call her class. He was subdued (this is rare!). The hall was busy, loud and filled with a lot of parental emotion!!  The Lodger looked up at me and told me he was a little bit sad.  THIS WAS A REVELATION!!! In my mind, I jumped into the air with delight and high fived the crowd.  We've been working with The Lodger for a very long time now to identify emotions.   In reality, I took him to the side of the room and we sat down and amongst all the chaos I got to the bottom of why he was a little bit sad. He needed to meet h...