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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 …
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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…

Words I thought I'd never say to my child with Prader-Willi Syndrome

Today I asked The Lodger to be quiet and to stop moving for one minute. 
These are words I thought I'd never say to my child with Prader-Willi Syndrome. 

He lasted about two seconds before he was off on a tangent while simultaneously moving every limb. He thought it was hilarious and I couldn't help but join him in laughing. 



I had flashbacks to the tiny baby who could only moves his eyes when he was born, to the the little boy who worked so hard to reach every milestone and who now can talk and talk and talk..... and move!

On a recent family day out, it was obvious to us his body was getting tired. Due to Prader-Willi Syndrome, The Lodger tires easily as he has low muscle tone. We'd brought the buggy along to give his legs a rest but any mention of sleep was out of the question. The Lodger has FOMO (fear of missing out!). He eventually agreed his legs were tired but he emphasised many times that he was not, so he sat in his buggy for short stints as we strolled around The Zoo…

Do you want to hear about my day?

The Lodger loves telling stories and his favourite story to tell is about his day. It's a joy to watch his face light up as he starts each new day telling us about his day yesterday. 


It's also a stark reminder of the hard work he's put in over the last four and half years. We've gone from speaking with our hands using Lamh (Simple Irish Signs), using cards to prompt words(PECS), to using a handful of words and cued articulation (to show him where the sounds come from), to finally to talking in full sentences. 

My job as an interpreter is fading fast and I'm delighted for him. The fact he can now communicate with mostly everyone has made his day to day life easier.  Recently more and more strangers are clearly understanding what he's talking about and he'll happily chat away with them FOREVER!

It does mean we are steadily entering a new phase of PWS.... Perseveration!

The Lodger gets 'stuck' on a topic, he will repeatedly ask the same question over and …