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Showing posts from 2017

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 …

Into the land of 'big school' education we go!

The Lodger has started primary school.

I'll repeat that.
The Lodger has started primary school. 
If I wasn't the person helping him put on his school uniform, getting his lunch ready, bringing him to school and answering his approximately 10,000 questions on the topic I wouldn't believe it. How can five years go by so fast?

On the first day of school, we gathered in the PE hall to wait for the Teacher to call her class. He was subdued (this is rare!). The hall was busy, loud and filled with a lot of parental emotion!! The Lodger looked up at me and told me he was a little bit sad. 
THIS WAS A REVELATION!!! In my mind, I jumped into the air with delight and high fived the crowd. We've been working with The Lodger for a very long time now to identify emotions.
In reality, I took him to the side of the room and we sat down and amongst all the chaos I got to the bottom of why he was a little bit sad. He needed to meet his helper and be reassured that she would, in fact, help him…

The incident of the strawberry and the horrible beans!

We have always loved eating out! We also happen to live in a town that loves food. How do I know this? Well it's a town that has so many recommended restaurants that it is often difficult to get a table at popular times!  

Last night we went out as a trio (The Lodger and Us!). When we first received the diagnosis of PWS, eating out was one of the things we thought we'd never get to do as a family. We couldn't have been more wrong. The Lodger not only loves eating out, he's brilliantly behaved at eating out and due to his super power of always finishing every meal, he gets great praise from all the waiting staff.
To quote him "Ah thank you! The dinner was delicious. Yum Yum Yum!"
Granted it does take some pre planning to ensure there is something that The Lodger can eat. The kids menu generally doesn't suit his diet.  We bring his own plate from home. His small portion of food would look minuscule on a big restaurant plate and as the eye can deceive the brain …

The Sticker Book

The Lodger is literal. There is no in between, there is no might mean something else in his world. Everything is as it is and sometimes this makes for funny conversations...

Such as the day we were having a tight-squeezy-hard to believe this boy started life with such low muscle tone-hug and I said 'O mummy bear loves The Lodgers hugs'... 
This was met with a laugh and the factual statement of
'You're not a mummy bear, you're a mummy person!'. 
I couldn't argue with that.
Or the day he got his Easter Holidays (break!!) I collected him from playschool and I was met with a super excited boy asking
 'Have you packed the bags? Where are we going? I'm so excited.We're going on holidays'.... 
I immediately filled with gut wrenching dread as I looked at the happy boy and had to break the news that Easter holidays really means Easter break. 
A break from playschool, a break from routine. I held my breath as he took this in... it's a five minute walk to …

The Chocolate Holiday

The Lodger is now very aware that people eat different things to him. At meal times he'll point out if we are having the same meal and mention any differences between them. He'll show off his counting skills too... 'one piece of bread', 'two tomatoes', 'three different foods on my plate'. 

He's also very aware that there are food types he can't eat. 

We've chosen to keep The Lodger on a healthy, balanced, nutritionally dense diet. After too many hours.. months, probably years stressing about different types of diets - low carb, high fat, high protein, ketogenic, the list goes on... We've settled on a nutritionally dense healthy diet for The Lodger.  Every few months we'll fill in a food diary to get it analysed by his dietitian to make sure he's getting everything he needs. There's probably not many people who use My Fitness Pal for their 4 year old but it's a very useful tool to plug in his meals and get immediate feedback…