Adventure is out there!

2018 is the year of adventure for our family. That’s how we’re selling it to The Lodger. Pirates have adventures. Pirates can do no wrong in the world of the Lodger. Adventures are a good thing.

Over the last few months, he’s watched as the estate agent visited to have a look around the house.

Why Mum?

He’s watched as the man in the van put up a big sign in the garden.

Why Mum?

He’s watched as we manically cleaned the house before viewings.

Why Mum?

He’s watched as we started packing things into boxes.

Why Mum?

He’s watched as the boxes started to fill up the rooms and his toys started to disappear.

Why Mum?

Today, the Lodger entered the house for the last time today to see all our belongings gone.

He walked into the sitting room.

“The couch is gone. The Christmas tree is gone. “

He walked into the dining room.. “Everything is gone.”

He walked into the kitchen...

“Mum, o no. The kitchen is still here. The men didn’t bring it to the warehouse. We need the kitchen in the new house. Mum!!!”

Quick explanation that the new house will have a better kitchen.

All is good.

He inspected the rest of the house.

He cleaned the radiators.

He drew his picture for the new residents.

He reminded me of his terms of moving: a cat, a dog and a bunk bed for his new bedroom.

He didn’t say goodbye to the house, he doesn’t like goodbyes.

He’s been a little overwhelmed this week.

“I can’t talk I’m too excited.”

But he’s ready for the adventure that 2018 will bring.

All in all, The Lodger took it in his stride.

A smooth transition to moving in to our short term home with family (thank you family!) before we find the new house.... the new house with the better kitchen.

And as a side note... amongst all the chaos, he’s mastered the art of wearing underpants, which in itself is a massive cause for celebration!!

Comments

To lock or not to lock, that is not the question anymore.

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...

Turn around and go home.

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 ...

Water, milk….

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...

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