The Lodger and Us

2563 days, give or take a leap year, is the amount of days since The Lodger was diagnosed with Prader Willi Syndrome.  It's been quiet on our blog (apologies) but it has definitely not been quiet in our lives. Update the blog has been on the to do list since May but sometimes things get in the way and sitting down to write a blog post does happen but it just doesn't get finished but we're back now!  The Lodger at his 7th Birthday party The Lodger recently turned seven years old. I can't believe it either. I always find during this time of year that I look back to those first couple of weeks of The Lodger and compare him to where he is now. Just the other day, he told me he was bored playing, the joys of summer holidays, so I asked him did he want a job. 'Yes I do' he replied. 'Ok, how about hoovering the house?' I asked him, fully expecting to hear a negative response but much to my surprise he said yes.  Did I ever think that tiny baby...

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 is literal. There is no in between, there is no might mean something else in his world. Everything is as it is and sometimes this makes for funny conversations... Such as the day we were having a tight-squeezy-hard to believe this boy started life with such low muscle tone-hug and I said ' O mummy bear loves The Lodgers hugs '...  This was met with a laugh and the factual statement of 'You're not a mummy bear, you're a mummy person!'.  I couldn't argue with that. Or the day he got his Easter Holidays (break!!) I collected him from play school and I was met with a super excited boy asking  'Have you packed the bags? Where are we going? I'm so excited.We're going  on holidays' ....  I immediately filled with gut wrenching dread as I looked at the happy boy and had to break the news that Easter holidays really means Easter break.  A break from playschool, a break from routine. I held my breath as he took th...

Today started like most other Saturdays, we had our breakfast and we discussed the plan for the day. The Lodger likes to know what is happening but in the same breath he doesn't like when plans change. Through lessons learned over the past few months, we only tell The Lodger plans for the day that are definitely happening.  But today, today was a Saturday. The to-do list for the morning had been made. We put on our jackets, T he Lodger carried the shopping bags and I picked up the car seat. I went to open the front door and realised my keys were missing!  After a little bit of panic that The Lodger was oblivious to, I found the spare car key and we used the back door to leave the house. This was met with many questions about the status of the front door but we moved past it and The Lodger helped carry the bags, as we made our way to the car. To my horror, the key I thought was the spare key was not for this car. I assessed the situation....