Skip to main content

The Sticker Book

The Lodger is literal. There is no in between, there is no might mean something else in his world. Everything is as it is and sometimes this makes for funny conversations...

Such as the day we were having a tight-squeezy-hard to believe this boy started life with such low muscle tone-hug and I said 'O mummy bear loves The Lodgers hugs'... 
This was met with a laugh and the factual statement of
'You're not a mummy bear, you're a mummy person!'. 
I couldn't argue with that.

Or the day he got his Easter Holidays (break!!) I collected him from playschool and I was met with a super excited boy asking
 'Have you packed the bags? Where are we going? I'm so excited.We're going on holidays'.... 
I immediately filled with gut wrenching dread as I looked at the happy boy and had to break the news that Easter holidays really means Easter break. 
A break from playschool, a break from routine. I held my breath as he took this in... it's a five minute walk to our house and I really didn't want to start the holidays (Sorry break!) on a bad note.... He was silent (this is very rare).... I repeated the explanation.... and after a couple of dozen questions  he accepted it.  We happily chatted about Easter break(!) all the way home. 

If you call lunch dinner or breakfast lunch, he'll very quickly correct you with a look on his face that you may have lost your mind. 

The Lodger is also very interested and keen to learn family relationships; aunts, uncles, grandparents, great grandparents, cousins... so any honouree Aunts/Uncles are very matter of factly being told that they are not infact his Aunt/Uncle. 

If you mention during a visit that it's time to go, he's gone. If you're visiting him, he'll say goodbye and expect you to leave there and then. No hanging around, no delaying. There's the door, goodbye! 

Having a son with PWS means we have to think of different ways to reward him. 
We can't use food EVER. 

So we use stickers, extra tv time, a new book, things we know The Lodger loves like going for a walk, family movie, music time. 

Recently the tables have turned and The Lodger now rates us, his parents. 
Randomly throughout the day, he'll tell us we've earned a sticker for his book or worse inform you that you're not getting one. 

I crunched the gears of my car the other day and a little voice from the back announced
'No sticker for you today!'

We both got awarded stickers for our recent family camping trip. This was the first true camping trip for The Lodger that he could remember- no luxuries, cooking on the stove, sleeping in the tent camping trip. We'd be glamping last summer, so it took a lot of explaining to The Lodger that it wouldn't quite be like that. He doesn't forget anything. He'd put an elephants memory to the test. 

If you make up the name of the girl in the shop, he'll remember and use the made up name EVERYTIME he sees her. 

But enough about his superpower skill of memory and back to the camping trip... he loved it. He loved every minute of it. It was a complete routine change and he just got on with it.  Meal times changed though the set up was the same (breakfast, snack, lunch, snack, dinner!). We did the Waterford greenway cycle route. We walked to the beach. We ate outside. The Lodger yet again proved to us, that PWS is not going to hold him back. He spent the days at our 'tent home' chasing a blackbird he called Jason around... The Lodger can't quite run but his fast-walking is heart warming, look at how far he's come, full of wonder watching. 
'Thanks for the great camping trip. I'm going to put a sticker in my book for you' #parentingwin

However, I failed recently on a weekend away to the Shannon House (our favourite place in the middle of nowhere, turn off technology, relax, enjoy the outdoors family holiday house being passed down through the generations). We are list makers. We have to be. The Lodger requires his kit (CPAP, Growth hormone, needle tips,  allergy medicine, plasters, medicine for this/that, distraction games/toys). We loaded up the jeep, got there and had a great time with family throughout the day. 


Bedtime came and the CPAP machine was set up and as I went to put the mask on I realised we were missing one part, the part that keeps the mask on his face. 
Disaster. Meltdown. Sobbing. 
And finally after I promised I'd take the blame with his nurses and doctors.... acceptance but no sticker for me! 

When we got home after our trip, The Lodger was getting ready for bed watching me as I searched the room for the missing part of the CPAP machine. I searched and he commented. Eventually I picked up his pillow and there was the missing piece
'Hahahahaha, I hid it there!' exclaimed The Lodger with a big grin on his face!
'Well done, mummy! Sticker for you!'

All I could do was laugh.....


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…