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!


Popular posts from this blog

It's the most wonderful time of the year....

This is our sixth Christmas.
Our sixth Christmas since our son was born and diagnosed with Prader Willi Syndrome.

If you had asked me back then, how I thought Christmas would be now, I would have told you that we probably would have cancelled it. When we first got the diagnosis of PWS, all we could see was food..... food everywhere, at every turn, at every event, everywhere. How were we going to protect our son, keep him safe and enjoy an event that's filled with food?

And then we started to learn about some of the other complexities of PWS, the need for routine, the challenges of change, the importance of setting expectations and we were overwhelmed.

What we didn't know was how incredible our son would be.

Today The Lodger got his Christmas holidays (break!). His last week of school consisted of a topsy-turvy week of no homework, a change in the usual school day and a nativity play in which he played the role of an angel. 
How did he handle it all?

Without a hiccup.... well he wasn&…

Jingle bells... not until December!

The festive season is upon us once again.

The Lodger was banned from talking about Christmas until December 1st and it was purely selfish on our part in saving our sanity.  What we didn't expect was that The Lodger would take this new rule to the extreme.
If we were out and about in November, we would inevitably stumble across Christmas themed decorations. I don't think many children would stand there pointing at them and shaking their heads saying "O no, take it down. It's too early. Mum close your eyes. You'll be so cross if you see it!"
When Santa's grotto appeared in the local shopping centre, he was on his way to talk to the security man to tell him to remove it. If there were fines to be handed out for premature Christmas decorations, The Lodger would have made a fortune!! 
It was like walking around with a mini Grinch. Though, in all honesty, a mini Grinch who 100% loves Christmas. 

The 1st December could not come fast enough. 
"How many days are le…

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…