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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 Lodger is young but already struggling with anxiety and control of the world around him. He likes to know everything that will happen ever and then he wants to know what will happen after that and then he wants to know why all of the above happened/is happening/will happen. Keeping up?

Consistent repetitive questioning is common in this quest to ensure we never  EVER change our story on the existence of EVERYTHING.

Earlier today he spotted a dog in a car in the shopping centre and asked who owned the dog. Obviously we didn't know but this just wasn't good enough. He then spent the entire shop asking random people if they owned the dog and if they knew his name. Changing from these stuck subjects can be quite a chore and while this may seem hilarious which in fairness it kinda was, as we watched people struggle and squirm firstly to understand the Lodger who's still working on his speech and then realising that the question itself was also a tough one, since it turned out we never did find the dog owner. 

This is just one example of the Lodger finding an every day situation and stressing himself out trying to find a solution. 

And that's stress that's not even about this favourite subject, FOOD.

But then there's the parental stress, the stress we try to take so the Lodger doesn't have to or in most cases work ourselves up about that doesn't even happen. 

Today Fm Alison Curtis & The Lodger and Us 

Recently myself and my wife took part in a radio interview raising awareness for PWS (Listen here). Naturally the Lodger was there, not one to miss an opportunity to meet new people. As we waited the lovely receptionist got something from behind her desk and brought it over to the Lodger behind her back telling him she had a present for him.
We knew it was a lollipop. It's always a f@*king lollipop. 

We sat momentarily while the stress built. Then we switched into food police mode (a kinda halfway place between being rude to strangers and protecting our son from lollipops and their sort) while putting codeword operation lollipop into action, a plan we'd trained for many times at home but never had to use. It was here, it was now. Time for some serious Liam Neeson action.

As I dived from my chair across the table intent on taking out the attacker, my wife spun into action to block the impending lollipop. But we were too late. A small soft cuddly bear emerged from behind the, again, lovely lady's back. 

We had created a stress that didn't exist. As we picked ourselves up off the ground the lady looked at us oddly but sometimes it's best to just smile in those situations. 
Let's face it, it's going to happen again.


So moral of the story: Don't try to be Liam Neeson or you'll just end up looking stupid, lying on the floor while a nice lady gives your son a bear.




Comments

  1. Maybe it was Rusty in the car. He loves sleeping in the car.
    Excellent writing Tigersurgeon

    ReplyDelete
  2. Was so delighted when I checked this blog and there were updates! I found this through A Drake's Progress, and I loved your writing style and humour so much I read every post from the very beginning. Can't wait to see what you write next.

    ReplyDelete

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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 …