Skip to main content

The Lodger on tour!


The Lodger recently had his first school tour. The week leading up to the much-anticpated school tour started with an unexplained bout of challenging behaviour. 

The Lodger went back to school after his midterm break on Monday. He didn’t have the best day, a bit tired, a little bit oppositional, but we put it down to back to school feelings (and I kept my fingers crossed that he wasn't getting sick!)

Tuesday continued in the same breath! I was perplexed as he was fine at home, his usual happy Lodger self! I had a chat with his teacher and SNA after school and no light was shared but we decided maybe it was school tour excitement?? 

That was until, Tuesday evening and myself and the lodger were  having a little chat about things using my “I’m not trying to find out anything but really I am” strategy.... and for some unknown reason, he had gotten it into his head that he wouldn’t be having snack or lunch on his school tour.

Alarm bells rang, Take a breath! You think you have all bases covered and them BOOM, you are walloped by a completely unexpected statement from your five-year-old with PWS. 

Imagine that as a person with PWS.. you’re excited about this thing called a school tour and it features a farm, your highlight, but you think you won’t get to eat anything after breakfast and until afternoon snack. Just imagine how The Lodger was feeling, completely overwhelmed... 'I love school and I love the sound of a school tour and everyone’s excited for it, so I should be too but no food!?'... It was no wonder he was punishing school! 

It further highlighted to me the point that for a person with PWS, food is stress! 
As much as he loves food, food is also the biggest cause of anxiety and stress for him. 
A normal day to day, all fine but a day of unexpected routine altering, anxiety overload. 

I reassured him. Dad reassured him.  The following morning his SNA reassured him. Everyone reassured him. The SNA went through the whole plan of the tour, what was happening and had the “now next later” plan in place. 

Sos and Lรณn (break and lunch) were to be combined but I just knew that would cause too much stress for the Lodger. He wouldn’t be able to enjoy himself, as he’d be waiting all day for lunch, it would be the only thing he’d be able to focus on and think about, so he had his sos on the bus! 

And then Friday arrived, the morning of the tour... and he woke up with his list of rules for me.... 
"Mum is sos on the bus packed?
Is my Lunch packed?
I need Tracksuit on.
I need Runners on
Mum, No school bag
Mum, No lunch bag
Is my lunch in a plastic bag"


How did he get on?? 

He LOVED it! The whole weekend we listened to the story of the tour, from the old house, to the farm, to the farm train and the bus..... and very unlike the Lodger, the food didn't take centre stage, so it really must've been a hit! 

Another milestone reached for our Legend in the making! 

Legend in the Making!




Comments

Popular posts from this blog

Ugh Pancake Tuesday!

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things. 
Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way. 
He then stopped and said “What is Pancake Tuesday?”
A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger. 
"Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is Pancake Tuesday?" "M…

This is Real

This is real.
This feeling. 
This comfort.
This feeling of being surrounded by like-minded people.
A warming safety feeling.
No stress.
No panic.
No fears.
The joys of the Prader Willi family weekend.

A time when you release your child to the elements, safe in the knowledge that if anything was to happen the Prader Willi Police (PWP) are everywhere. Watching. Like undercover agents hiding in the shadows. But not actually in the shadows. 

We are a fun crew. A happy crew. A proud crew. We look out for each other with a nod and a smile. A simple nod of 'I've got this, fear not'. It's lovely to embrace these moments. The Lodger loves these weekends. If excitement wasn't sometimes such a chore it may well be exciting. A time when he can meet all his like-minded friends and enjoy the freedom although he's being watched by so many knowledgeable eyes. 

Another dad once told me; "We, the parents are the experts of this syndrome". And those words have never left me. 

As I …