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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…
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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…

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 …

A conversation with The Lodger

Lodger, where are your legs? I don’t know. Where did Mummy leave them? I don’t know. Da. Yes Lodger. Why do you need them? To put them on you. Why? So we can go out. Why? Where are we going? To the shop. What shop? The fish shop. Why? To buy fish. Why are we buying fish? For lunch. I love fish. I love lunch. Where are my legs?
Obviously not his actual legs. They are attached to him, luckily. Enough issues without removable legs. The Lodgers legs are his action boots, his plastic leg holders that help support his ankles while we wait for the muscles to grow.  I’m wondering if they ever will.

Where’s the fish shop? Near the hotel. What hotel? The swimming hotel. (Where we have gone swimming) Why? Because it is. Why? Look a bird. 
The art of ongoing distraction 101. Sometimes.
Where? You missed him. Where? Over there. I don’t see him, Da. Da. I don’t see him. What bird?
Distraction failure. Next attempt.
We’ve to go to the other shop first. What shop? The food shop. Why? To buy food. Why? Food for dinner. I love dinner. What’s fo…

Lamenting the Soup!

If you've spent any time in The Lodgers company, you'll know he is a fan of telling stories. I've just spent the last thirty minutes listening to the story of the summer holiday retold by The Lodger. It's a popular subject of his and due to his superpower of incredible memory recall, no detail is spared.
The Lodger remembers the smallest details that would well be forgotten by most.
It's a family tradition at this stage, that we cut it fine with ferry departure times. We were actually well on target for being early for once except the cafe we chose for lunch moved at snail pace when it came to service. 
Ultimately this led to The Lodgers soup being transferred to a takeaway coffee cup, with the promise he could have it onboard the ferry. 
The convoy packed up, loaded the humans and set off to board the ferry with great excitement. Somehow The Lodger and cousins soup got mixed up amongst all the commotion and unbeknownst to us, we left the car deck on the ferry without …