The Lodger and Us

I’ll start by answering the most common question we’re asked at the moment (especially now that he’s in his new school): “How is The Lodger?” And I always answer the same way, He’s getting on great. Great, although a great word (and it does contain the word eat , which is a favourite in this house) is almost not great enough for just how well The Lodger is getting on. Terrific. Fantastic. Amazing. Excellent. Continue along those lines and you’ll begin to understand just how great The Lodger is. Historically, whenever I say things are great out loud, that’s usually when a curveball smashes into us and I’m left thinking I should never have said anything at all. But just for now, to remember how good things are, I’m going to say it out loud and put it into the universe. The Lodger is getting on great. Home life: great. School life: great. The in-between outside world life: great. A calm confidence has opened up in him. He is happy in who he is. While we’d love to take all the credi...

When things are quiet, we don't tend to write. There's the odd update on The Lodger and Us instagram but there hasn't been a blog post in a long while. I'm happy to report that things are quiet at the moment. Quiet means all is calm and well in the world of The Lodger. When we're in this moment, I'm always half on edge waiting for a curveball but in our almost 13 years of the PWS world, you in a way get used to the quiet times, while waiting for that  inevitable PWS unexpected but expected twist.  The Lodger is watching his Friday movie, had the best yoghurt he has ever tasted (Plain and Greek if you were wondering, and yes he has had it many times before) and is looking forward to the weekend of not a lot planned.  When I say all is quiet, it's our quiet, our unique normality of quiet that unless you're in the PWS world you probably wouldn't describe as quiet.  Our kitchen remains locked. Our routine is our routine. Food happens at food o'clock....

It’s approximately 4421days since we got The Lodgers diagnosis of Prader Willi Syndrome.   To save you doing the maths: twelve years and almost 2 months ago.  We’ve learned a lot in those twelve years- strategies to help distract him from food, tools to help transition from task to task, methods to help him calm down, strategies to keep us all going day to day….  We’ve met many experts in the field of PWS- from doctors, nurses, psychologists, researchers and a range of therapists from speech and language to occupational and physios.  We talk with many  PWS families- both with children older and younger than our boy, The Lodger.  I’ve often been asked if we lock our kitchen. Up until yesterday the answer was ‘not yet.’  Today I sat with him as I was helping him put on his socks. It’s still a tricky thing for him to do- even with all the helpful tips from occupational therapists over the years. Somedays he’ll do it easily, other days he needs h...

This week we were driving along and Younger bro started listing food. “Apple, raisins , rice cakes” “Ugh” said The Lodger “Mummm make him stop. He’s making me think of food and it’s not time for food!” So, I had to ask my four year old son to not mention food to his big brother who has PWS, even if it’s food that’s ok for his special tummy. I explained we didn’t want to make The Lodger sad. That sometimes food chat can making The Lodger  emotional. Then The Lodger adds in ‘unless I talk to him about food first, then we can talk about it’.   ‘Is this because of the Prader Willi?’  said Younger Bro “Yes!” said The Lodger.  Being a sibling to someone with PWS is complex. There is always something new to navigate but at four years old he understands more than most people. “Water, Milk..” said Younger bro. “Mummmmm they’re things I drink with food. Tell him the rules again!” said an exasperated Lodger.  Younger bro is sharp.  I could see his cheeky knowing glanc...

Prader-Willi Syndrome. It raises its head when you least expect it. Although in hindsight it was totally going to appear because we did everything we weren't supposed to.  The Lodger and Little Bro walk in the woods (not today!) I'll set the scene. It's a lovely autumnal Sunday. The sun is shining, it's not raining and it's not cold. A walk would be just the ticket before The Lodger has his Sunday movie. As you know, routine is important. Movies can't be missed.  We decided on our route- the route we call the castle route. You guessed incorrectly, it doesn't feature a castle but if you go off path and really crane your neck you might just glimpse one.  However when we got to the woods, I switched the route up. I don't know why. I just did. A moment of spontaneity. Anyway Hindsight. Lesson learned.  The new route meant a bit of climbing, so a lot of helping The Lodger and for The Lodger he wasn't able to continue his telling of the story he paused ...

By Rory The Lodger loves cows. They are his favourite animal. They are also his baby brothers favourite animal because the Lodger decided they are.  Cow watching! The Lodgers birthday was recently. A huge day in his and our life. 10 years into our journey of discovery and all the other things Prader-Willi Syndrome throws at you. He wanted the perfect birthday. Don't we all on our birthday. Unfortunately the Lodgers idea of the perfect day for our birthdays doesn't always live up to his high standards. Or what you'd actually like to do on your birthday. And this can lead to unhappiness with the plan.  Things have to happen certain ways. And sometimes for example if I had a glass of orange juice for my last birthday breakfast I obviously have to have one this year. And probably, every year. Routine is important. We created that monster ourselves. This year my birthday was surrounded by much sobbing and stress as when the cake didn't work first time (and I was OK with it, ...