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...

Lodger, where are your legs? I don’t know. Where did Mummy leave them? I don’t know. Da. Yes Lodger. Why do you need them? To put them on you. Why? So we can go out. Why? Where are we going? To the shop. What shop? The fish shop. Why? To buy fish. Why are we buying fish? For lunch. I love fish. I love lunch. Where are my legs? Obviously not his actual legs. They are attached to him, luckily. Enough issues without removable legs. The Lodgers legs are his action boots , his plastic leg holders that help support his ankles while we wait for the muscles to grow.  I’m wondering if they ever will. The Lodgers Action Boots Where’s the fish shop? Near the hotel. What hotel? The swimming hotel. (W here we have gone swimming ) Why? Because it is. Why? Look a bird.  The art of ongoing distraction 101. Sometimes. Where? You missed him. Where? Over there. I don’t see him, Da. Da. I don’t see him. What bird? ...

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...