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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 and Dublin City. 


The Lodger walking around The Zoo

After dinner that evening, we were talking about our fun day, recalling all the animals we'd seen, the people we met, the things we saw, the food we ate and where we ate it and who had what and lamented the tiny piece of carrot that fell on the ground....

In The Lodgers world this is catastrophic... there's no 5 second rule for our family, if it hits the floor, it's in the bin. Everything in The Lodger's world has to be consistent and so when a pea rolls off his spoon at home or a bit of carrot falls on the floor in a restaurant, its swiftly picked up, removed from sight and put in the bin. The piece of food remaining on the floor has to go, it has to be out of sight. Otherwise The Lodger will fixate on it and anxiety will take hold. As always, the lost bit of food will be replaced from backup supplies and he'll continue with his meal. 

After the analysis of the day, we also talked about how his body got tired and I asked was he tired now. The Lodger thought for a minute and then said 'My legs aren't tired, my eyes aren't tired'
'Me tired' he said with a smile on his face, 'Me tired!'.

From the moment The Lodger wakes up he talks. He talks about everything. He has an extraordinary memory, remembering the tiniest details of a day from a very long time ago. It's quite the skill but it can also be a hindrance. As already said, things in The Lodgers world needs to be consistent, so if we've made him a promise, we have to follow through. 

There's no grey lines with The Lodger. It's black or white, one way or the other. 
When crossing the road, we have to ask if there's any moving cars. A stationary car is a car.

This morning I marvelled at him. At how far he's come. 
Yes, he has his quirks but as a wise woman who's son also has PWS once told me, pick your battles.
If our plate mats have to be aligned with his on the table, it's a minor thing.
If we have to cross the road at a certain point on the way to playschool, it's a minor thing.
If we have to use direct phrases with no ambiguity, it's a minor-ish-we're getting used to it currently thing! 

The Lodger thinks it's hilarious to lose the "Let's be quiet and not move for one minute" game. He laughs and laughs and laughs..... and moves and moves and moves... and even though we might like one minute of peace, we love it! 

PWS 0 - The Lodger Winning! 


Keeping his Papa trapped behind the stair gate! 

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