Lamenting the Soup!

If you've spent any time in The Lodgers company, you'll know he is a fan of telling stories.

I've just spent the last thirty minutes listening to the story of the summer holiday retold by The Lodger. It's a popular subject of his and due to his superpower of incredible memory recall, no detail is spared.

The Lodger remembers the smallest details that would well be forgotten by most.

It's a family tradition at this stage, that we cut it fine with ferry departure times. We were actually well on target for being early for once except the cafe we chose for lunch moved at snail pace when it came to service.

Ultimately this led to The Lodgers soup being transferred to a takeaway coffee cup, with the promise he could have it onboard the ferry.

The convoy packed up, loaded the humans and set off to board the ferry with great excitement. Somehow The Lodger and cousins soup got mixed up amongst all the commotion and unbeknownst to us, we left the car deck on the ferry without the takeaway coffee cup of soup.

After checking out the cabin, we settled ourselves for the crossing.

"Where is my soup?" The Lodger inquired.

UH OH PANIC......

Initiate Emergency Forgetting of Food Procedure (EFFP for short, something we had never actually planned for but it's certainly in place now).

"Soup? O the Captain said it was too hot, so we had to put it in the bin but look, I have a delicious salad here with your favourite coloured tomatoes!"

There followed a moment that could've swung either way; meltdown or contentment.

Miraculously, the meltdown was averted and The Lodger happily munched on his salad of different coloured tomatoes.

I'm not sure The Lodger will ever forget the soup. Every single time he tells this story, we lament it.

"I miss that soup. It was yuk, too hot. The Captain put it in the bin." he frequently reminisces.

I just hope that should we ever come across a ferry captain, he'll be quick enough to answer the inevitable question of the location of the soup with a response that keeps The Lodger happy.

Prader-Willi Syndrome, throwing curveballs at us since 2012.

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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