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Showing posts from 2018

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…

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 c…

Look how far YOU have come!

Sometimes we are all a little bit too Irish.
We just can't take a compliment. We look at our feet, shuffle uncomfortably hoping that the nice person would just go away and leave us to our lives. It's so Irish.
Recently the Lodger visited a neighbour with his grandmother (the Dodo - old extinct bird, her joke, not mine) and he had a great time. 

Later that evening my wife received a text from that neighbour saying how she had the pleasure of entertaining the Lodger and that he was a breath of fresh air. So far nothing new to me, the Lodger is pretty amazing. The next bit is the bit that caught my attention:
'While I appreciate there are many difficult times he really is a credit to his Mum and Dad.'
Firstly I read it and thought that's nice but I'm Irish so I don't really know how to take compliments but when I thought about it I realised that the Lodger is great because of us. 
And sometimes it's nice to just sit and reflect on that. We're not doing a bad …

Planting the Thought Seed!

A few years ago we went to a Living Better with PWS workshop. I still take out my covered in scribbled notes guide from the workshop as it is full of hints, advice and information from other parents of kids with PWS. Our mentors!

There is nobody who understands PWS better than other parents. Granted, their child might have different symptoms or the same symptoms with varying degrees of severity, different strategies for dealing with the array of challenges but from each parent I have met, I have gained knowledge. (Thank you!)

As the Lodger has gotten older and new challenges arrive, the guide has proven invaluable.

My old reliable car has proven not so reliable and has reached the end of it's days. Not bad for '98 vehicle. This, for The Lodger, could have been traumatic, except for the fact I had planted the seed a few months ago.

We were driving home one day and we got on to the subject of old things and how sometimes we need to replace them. I happened to use my car as an exampl…

Easter Eve

It’s the night before Easter and all through the house, not a creature is stirring....
Oops wrong event! 
It’s Easter Eve and the Lodger has been busy over the last few days questioning all things Easter Bunny, most questions relating to whether the Easter Bunny knows about his special tummy.
'Mum have you told the Easter Bunny about my special tummy?' 'Mum, how did you tell him?' 'Mum, was it a letter? I didn't see you post it." 'Mum, what about you? You don't have a special tummy. Will you get a chocolate egg?' 'Mum, what is a chocolate egg?' 'Mum, I think the Easter Bunny DEFINITELY knows about my special tummy!' 'Mum, I think I really like Easter. Mum, the Easter Bunny will bring me special things." 'Mum, does he know I live here now and not in the old house.' 'Mum, what about our new house. Will he know where that is?' 'Mum, we don't live in the new house yet. Does the Easter bunny know?' 'Mum…