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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 doesn’t regulate temperature the way a typical person does, so if we’re zapped, he is even more so. 

It could  be the delayed backlash of something that happened a while back... his long term memory is incredible, but it’s not always a benefit! 

It could be the fact he’s moving house and school... but we drip fed the news of the above to him to allow for processing and chat and continually remind me that he can call in to see everyone in his old school.

It could be ice cream day in school playing on his mind.... it was a last minute thing and he got bubbles, but bubbles aren’t food. It’s a learning curve. 

It could be the boy telling him to eat something out of his bag..... definitely no blame on the boy, he’s five too but food equals  stress for The Lodger. 

It could be the end of year buzz in school

It could be nothing on this list.

It could be 100 things or 1 thing but he’s five years old and confused and doesn’t know why he feels the way he does. 

So we chatted last night about behaviour, a walk with Dad in the field, a cuddle with mum in bed and always approached positively, relaxed and with a calm voice tone. 

We explained that everyone in school likes him and wants him to be happy, that they understand he’s having a tough time and want to help him. 

As always, we start each day fresh! 

Luckily, he does have a dream of one day being a farmer. 

So his reluctance to do school work of letter and number writing was encouraged by the fact that farmers need to write the names of animals, the number of animals, what the animal ate, where the animal slept, when the animal had a bath, etc etc etc 

We sent him off to school today, a Friday, happy and armed with his knowledge that farmers need to learn to do lots of things and the best place to do this is school! 

It may just click in and work, or it may take a few days of reassurance, reminders and positive reinforcement. 

As I got to the yard for home time,  I was running behind time due to being stuck behind a tractor (the irony!), so my anxiety was high incase I was late and also just due to the “I’m getting used to” feelings of parenting a kid who was facing a challenging week in school, not to mention the melting warm day, that was making everyone feel uncomfortable. My heart was racing, I was internally panicking, thinking to myself how awful anxiety is. I was trying to appear chilled and relaxed as I waited to hear how The Lodgers day went. Everything was crossed, I was hoping and wishing that the day just went even a tiny little minuscule bit better for him.....

He appeared. He gave me the little wave he always does, as he waits to be released. I watched him as he walked towards me hand in hand with his SNA. And as upbeat as I can possible muster, I asked how the day went!

“Much better! He was tired and hot but he did some maths work!!!”

Phew, relax and enjoy the long weekend ahead of us... 
A new school week starts Tuesday and we will continue the reassuring, positive  reinforcing plan to keep the PWS moment causing crocodile at bay! 

Tick tock tick tock 

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This is Real

This is real.
This feeling. 
This comfort.
This feeling of being surrounded by like-minded people.
A warming safety feeling.
No stress.
No panic.
No fears.
The joys of the Prader Willi family weekend.

A time when you release your child to the elements, safe in the knowledge that if anything was to happen the Prader Willi Police (PWP) are everywhere. Watching. Like undercover agents hiding in the shadows. But not actually in the shadows. 

We are a fun crew. A happy crew. A proud crew. We look out for each other with a nod and a smile. A simple nod of 'I've got this, fear not'. It's lovely to embrace these moments. The Lodger loves these weekends. If excitement wasn't sometimes such a chore it may well be exciting. A time when he can meet all his like-minded friends and enjoy the freedom although he's being watched by so many knowledgeable eyes. 

Another dad once told me; "We, the parents are the experts of this syndrome". And those words have never left me. 

As I …