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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…
Recent posts

Speaking as gaeilge!

"Gabh mo leithscéal...
Gabh mo leithscéal.... Gabh mo leithscéal....."
I drove along perplexed.  99.9% of the time I understand The Lodger but there's always that 0.1% that will leave me completely at a loss. I'll ask him questions to see if I can figure it out and most of the time it works but not this time. 
Due to PWS, The Lodger's speech is delayed. He can say all the words in the world now but he misses the last syllable of most words and some sounds are still difficult for him but he's working on it. This means that to the untrained and unfocused ear, some words sound alike.
Just the other day he announced at breakfast "Mum, I'll help you" and I said, "Fantastic, superstar!". His father and Auntie looked on aghast until they realised he said help, not hate!
And just like everything in the world of The Lodger, practise and patience will get him there.
However this particular time, on the drive in to town, I was at a loss!
"Sorry l…

Beeping Rules

It's 3am.
It's beeping again.
It might stop.
It doesn't.
How many times is this?
Only 4.
A good night so far.


I head stumbling for the Lodgers room. He's asleep, oblivious to the constant monotonous beeping. I fix the strap back on his face and the beeping stops. For now. Time for a quick snooze before the next one. So far a below average night from the average 7/8 trips across the landing and the World Record of eleven but that was in the midst of a head cold so I'll allow him that. Him and his bloody beeping mask.


But yet I am no more tired than I was before the Lodger, before his mask, before PWS. I'm trained. Self-trained, and for the most part self-taught, in the adventures of Prader Willi Syndrome.

The beeping rules are simple. Beeping mask when we're awake not my problem. Beeping mask when we're asleep, very much my area. I don't know how we got to this agreement but it works. Possibly wifey enjoys the sound of consistent beeping through the night or …

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 e…

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…

The Lodger and the pirate

I think the only way to get to know The Lodger and all of his idiosyncrasies is to get to know The Lodger. 

Prader Willi Syndrome (PWS) is complex, extremely complex. 
You think you have an idea of what it is and then WHAM BANG something comes at you unexpectedly. PWS is much more than food. Food is actually the easier thing to manage and inform people about, it's the quirks of behaviour that's the most challenging. 
The food rules are easy to follow; The Lodger can only eat what we give him. He eats five times a day. Nothing extra ever. He must be supervised in food environments. Food is never used as a reward or punishment.
Tick, Tick, Tick, Tick, Tick.
It's the challenges of behaviour associated with PWS that's the hard thing to teach.
Settling into big school was tough on The Lodger, tough on us and more than likely tough on his school team too. There were days were I frantically googled home schooling, I reached out to parents of older kids  with PWS for tips on how they hel…