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Showing posts from 2018

Forest Animals

The Lodger loves walking. Which for a person with PWS is great. Accidental exercise as I like to call it. Walking in our house is often a treat. When the Lodger has a good day in school his treat is a walk to see the cows. If the day isn't so good we walk a different way punishing him with hedgerows and trees. That'll teach him.

We use incentives a lot with the Lodger to reward his good behaviour and keep him focused on little goals day by day. Luckily the excitement of a visit to see the cows keeps him on the straight and narrow most school days. The only problem now is there are plenty of cows in the fields around the house so he doesn't have to go far to watch his favourite animals.


The Lodger loves walking to school, walking to see the cows, and also walking in the forest opposite our house. The Galway forest as he calls. In his world literally the only forest in Galway. One of only two in Ireland. The other one is in Kildare if you're wondering. We often go on jaunt…

Surviving Halloween

The Lodger has learned the days of the week. 
Brilliant. 
Did you read that with an underlying sarcastic tone?  Honestly, it is fantastic that The Lodger has learned the days of the week, it's another milestone in the never-ending list of things society deems goals to achieve. However, because of this new skill, we can't be as direct with future plans. An answer with the day of the week before meant nothing but now it's a different story. 
I accidentally answered his question of when Halloween is on with the day of the week. I'll blame it on being slighted distracted. 
So, in the run-up to Wednesday, The Lodger did his new skill of saying what day it is and following it with the future days. This just sounds like an excited kid. Correct but also wrong because when you mix PWS in, you get excitement and anxiety. 
The plan was put in place. Incase you think we sit up at night, with paper and pens and whatever else you need to make a plan, we don't. It becomes a covert plan t…

The Last Last Day

Just the other day myself, The Lodger and his Auntie were having lunch when he threw out a question that had his Auntie nearly spraying her cup of tea around the room.

"Is Papa going to die tomorrow?" The Lodger innocently asked. 

"What, of course not, why do you think that?" I replied.

"Well, Papa said he'd be an old man tomorrow and it's his last day!"

FYI Papa is retiring.

It reminded me of the show Dinosaurs, were on Hurling Day the son-in-law hurled his mother in law off the cliff and the grandson really didn't like the idea of it! I've a feeling it's a show The Lodger would enjoy! 



I reassured The Lodger, explaining retirement and all was well... or so I thought. 

Later that day, we were travelling across the country homeward bound and I got the grilling, I should've known to expect. 

"Mum,  you said that Mother (his great-grandmother) died because she was old"

Me: "Yes I did say that but I should have said extremely ol…

If CPAP was Ironman, The Lodger would be the winner!

If CPAP was Ironman, The Lodger would be the winner!

That's the quote of the day. I think we better get it printed on a t-shirt.  The Lodger, Champion of CPAP 2018
For those without knowledge of Ironman, it's an endurance event that the better half took part in last weekend. This year was the Ironman 70.3, a 1.9km swim, 90km cycle and a half marathon, all to be completed within a time limit. The Lodger and I were the Ironman Support Crew. In the Lodgers words, our job was to 'Cheer on Dad and see his medal at the end!'. Two boxes ticked and to quote The Lodger "Well done Dad!"


We had many celebrations this summer. A New house, a family wedding, birthdays, triathlons, Ironman... but in the world of living with PWS, we have some PWS celebrations too.
Obviously, being a champion of CPAP (For those without knowledge of CPAP clickhere ) is now close to the top of the list, possibly even knocking down the Ironman medal from first place. The Lodger had his review with hi…

The Lodger, The Summer (so far) and Us

The summer break is going fast. It's not summer holidays, as in The Lodgers world a holiday is where you pack a suitcase and go somewhere, so it's summer break in this house.  Infact, it's summer break in the new house, our new home. 
So realistically, lots of suitcases were packed and boxes.... so many boxes. 

But we are here, having made the huge decision to move across the country, we are slowly unpacking boxes as we settle into our new home. We have been full-time residents in the west of Ireland for a little over a month now. It's been busy, hence the lack of updates on The Lodger and Us.

Usually, when we go quiet, we are facing a challenge and you might be expecting me to write about the challenges the Lodger has faced with the epic change that is moving house. I can, hand on heart, declare that The Lodger has settled into his new home without a hiccup. He spends his time walking around telling us how much he loves this house, our new house. He's happy. We'r…

Honey I've been poisoning the child!

The title is the phone call I got from my wife one evening recently and it turns out I was really happy. And so was she. 
I should explain.
The Lodger has not been the Lodger of late. His behaviours have changed, all for the worse. Lack of focus. Agitated. Oppositional. Aggressive. Anxious. Food-seeking. ..... Along with 50 million extra questions on top of the original 50 million questions, we can just about deal with.
Which in turn resulted in what we call "Normal Meltdowns" and "More than Average Meltdowns" and then there are the ABSOLUTE VOLCANIC ERUPTION EPIC PROPORTION MELTDOWNS. The meltdowns that make normal meltdowns almost funny. The meltdowns were people around stop smiling and feeling sorry for you and actually disappear. 
This all started just after the Lodgers midterm at the start of May. Firstly the school tour stress started as the Lodger didn't know/wasn't told that he would get his lunch on the tour. No amount of seeing animals would have made…

The PWS Moment-Causing-Crocodile

The Lodger has had one of those weeks were he just wasn’t himself.


He was fine at home, but in school.... as another parent calls it he was having a lot,  infact, far too many PWS moments! 
Some people call this the PWS monster but for us and our pirate obsessed, Captain Hook number one fan, I’m calling it the crocodile! It’s lurking there, waiting to snap! Tick tock tick tock... 
Anxiety = challenging behaviour.  It’s PWS 101. There is always a reason and most importantly, it is never done on purpose by a person with PWS. 
We had a meeting with his school team and we bounced some ideas around as to what could be causing the onset of challenging behaviour. It could have been a host of things or one thing or something that we haven’t even guessed... 
It could be the change in school principal, he loved his old one
It could be the leaving of a teacher on maternity leave who usually says Hello to him. 
It could be the heat, an awful stuffy dead heat that has everyone’s energy zapped. The Lodger…