Just smile and say it's nice to meet you!!

99% of people greet The Lodger like he's just any other kid- smile, joke, play etc., but then there's that 1%. The 1% of people I dread to see.

The pity brigade!

"O isn't his life going to be tough!"

"O well that's your life over!"

"Challenging times ahead for both you of."

The list goes on....

The first time this happened, I smiled and tried to say something but no words came out!

I walked away fast! I then felt guilty and sad as I should've stood up for my son. Now I'm prepared.

I've my reply..

Yes I'm sure there'll be some challenges, like with any child but there'll also be lots of joyous celebrations! If anything he's thought me so much about life so far,. Yes it's heartbreaking. My heart will be forever broken as I know my son will face challenges the rest of us can't even imagine but in his short time already he has shown courage, bravery and determination far beyond what any adult could cope with.

I'd love to add-

We don't need to be reminded of PWS. We think of it every single day.

It's your job to smile, say hello and tell him Something good!

Pity him- never!

Celebrate him- always!

Don't feel sorry for us. He has shown us a compassionate world, an understanding world and he has opened our eyes to suffering far beyond his own.

As a parent of someone with special, or as I like to say additional needs the future is uncertain. If I'm walking around the village and not sitting in a hospital/therapy appointment- it's a good day!

So if you see us out and about, just smile and say it's nice to meet you.

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The Lodger on tour!

The Lodger recently had his first school tour. The week leading up to the much-anticpated school tour started with an unexplained bout of challenging behaviour.
The Lodger went back to school after his midterm break on Monday. He didn’t have the best day, a bit tired, a little bit oppositional, but we put it down to back to school feelings (and I kept my fingers crossed that he wasn't getting sick!)
Tuesday continued in the same breath! I was perplexed as he was fine at home, his usual happy Lodger self! I had a chat with his teacher and SNA after school and no light was shared but we decided maybe it was school tour excitement??
That was until, Tuesday evening and myself and the lodger were having a little chat about things using my “I’m not trying to find out anything but really I am” strategy.... and for some unknown reason, he had gotten it into his head that he wouldn’t be having snack or lunch on his school tour.
Alarm bells rang, Take a breath! You think you have all bases c…

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 …

Easter Eve

It’s the night before Easter and all through the house, not a creature is stirring....
Oops wrong event!
It’s Easter Eve and the Lodger has been busy over the last few days questioning all things Easter Bunny, most questions relating to whether the Easter Bunny knows about his special tummy.
'Mum have you told the Easter Bunny about my special tummy?' 'Mum, how did you tell him?' 'Mum, was it a letter? I didn't see you post it." 'Mum, what about you? You don't have a special tummy. Will you get a chocolate egg?' 'Mum, what is a chocolate egg?' 'Mum, I think the Easter Bunny DEFINITELY knows about my special tummy!' 'Mum, I think I really like Easter. Mum, the Easter Bunny will bring me special things." 'Mum, does he know I live here now and not in the old house.' 'Mum, what about our new house. Will he know where that is?' 'Mum, we don't live in the new house yet. Does the Easter bunny know?' 'Mum…

The Lodger and Us

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