Skip to main content

Thank you Walter!

"If you get in your buggy, you can have a bar!" said a Mum to her little girl.

I overheard this on our walk down to the village today. 

I can't remember who advised us or maybe we read it somewhere in the early days but since The Lodger has been born, we have never used food as blackmail.

It's something I would've been guilty of, as a way to pacify my lovely niece before The Lodger arrived. I wouldn't even have thought twice about it pre Lodger. It's natural. It's something people do everyday. Food is used as reward and punishment. 'No treats for you if you're bold', 'Be good and you can have something nice'!

Food is motivating. It's not just children, it's Adults too!  'If I eat healthy Monday to Friday, I can allow myself a treat at the weekend.', I've been so good lately, I can have a slice of cake.'

It's getting harder now. The Lodger is becoming a lot more food aware. It could just be his age or it could be Prader-Willi Syndrome. We will never know.

The Lodger plays in the sitting room before breakfast is ready. I used to carry him in but now we make him walk supported. We try to sneak as much physiotherapy into everyday life as we can. We can't say 'Walk in and you'll get your breakfast'. We have to think of the future. 

We have to use different motivation! 

First thing in the morning, due to low muscle tone, we always find The Lodger's energy levels at the lowest. He'll sit on the floor and say No. He's a typical two year old in that sense. No is fast becoming his favourite word. Then Walter will appear and The Lodger will pull himself to standing and he'll ask for Walter.

The Lodger holds Walter by the hands as I support him and we walk into the kitchen. This takes a lot of encouragement. 

Walter's great though! 

'Walter wants to see how strong you're getting.'
'Walter will clap hands when you get to the door.'

He's The Lodgers favourite and he's fast becoming mine (Sorry Gonzo!) due his amazing abilities to get The Lodger to do things!

We're still in the early days, food is still on the tip of your tongue as a motivational tool but overtime I know this will change. You have to keep policing yourself and the people closest to The Lodger to change habits to make life easier, healthier and safer for The Lodger.

Food is never a reward or punishment in our house. It's just fuel for the body. 

p.s. To Walter. When PWS and all it's complexities might make us feel a little low, thank you for making those mornings a little easier. 












Comments

Popular posts from this blog

Prader Willi Syndome - The Liam Neeson Effect

Firstly I can't say I am in any way qualified to discuss this subject. There are no letters before or in fact after my name. I went to college but didn't learn anything about stress, anxiety or Prader Willi Syndrome. And I don't get paid large quantities of money to discuss these topics.
But what I do have are a very particular set of skills, skills I have acquired over a 4 year period. Skills that make me a nightmare for people like you.  The last part is factually not correct but if it's good enough for Liam Neeson it's good enough for me.

My skills are a little different and totally self taught through nothing other that necessity. The necessity to deal with the wonderful symptom of anxiety in a 4 year old with Prader Willi Syndrome.  Again I'm only 4 years and 7 months into my journey of involvement with Prader Willi Syndrome so my experiences and thoughts are just mine and not the silver bullet of PWS. If it was, maybe more people would read this blog.
The Lodg…

The Shuffle Monster

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable.
But then there are those other times...
It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the 'Will they remember to give me breakfast?' A consistent worry in the world of PWS.

Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake Walter and pulling the covers back up on him. Important not to wake wake Walter. Th…

Prader Willi Syndrome, it's not always fun!

It's been quiet in the world of The Lodger of late and by quiet I mean so freaking busy there's no time to write about the trials and tribulations of Prader-Willi Syndrome. 
I guess it's also easier to write when times are good and when there's time for celebration but I guess if we're to be honest about Prader-Willi Syndrome recently there’s been a few more bad days. 
If it's not another disappointing hospital trip where your answers still can't be answered because let's face it they don't know all the answers, it's another hoop to jump through trying to get The Lodger better services in pre school and trying to plan for primary school next year. 
And then there's The Lodgers ongoing development and attempts to understand the world around him. 
The Lodger is four and the behavioural challenges of PWS are showing through. Possibly due to lack of understanding and still some difficulty  with communication the Lodger is testing his surroundings la…