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.

Comments

To lock or not to lock, that is not the question anymore.

It’s approximately 4421days since we got The Lodgers diagnosis of Prader Willi Syndrome. To save you doing the maths: twelve years and almost 2 months ago. We’ve learned a lot in those twelve years- strategies to help distract him from food, tools to help transition from task to task, methods to help him calm down, strategies to keep us all going day to day…. We’ve met many experts in the field of PWS- from doctors, nurses, psychologists, researchers and a range of therapists from speech and language to occupational and physios. We talk with many PWS families- both with children older and younger than our boy, The Lodger. I’ve often been asked if we lock our kitchen. Up until yesterday the answer was ‘not yet.’ Today I sat with him as I was helping him put on his socks. It’s still a tricky thing for him to do- even with all the helpful tips from occupational therapists over the years. Somedays he’ll do it easily, other days he needs h...

Turn around and go home.

Prader-Willi Syndrome. It raises its head when you least expect it. Although in hindsight it was totally going to appear because we did everything we weren't supposed to. The Lodger and Little Bro walk in the woods (not today!) I'll set the scene. It's a lovely autumnal Sunday. The sun is shining, it's not raining and it's not cold. A walk would be just the ticket before The Lodger has his Sunday movie. As you know, routine is important. Movies can't be missed. We decided on our route- the route we call the castle route. You guessed incorrectly, it doesn't feature a castle but if you go off path and really crane your neck you might just glimpse one. However when we got to the woods, I switched the route up. I don't know why. I just did. A moment of spontaneity. Anyway Hindsight. Lesson learned. The new route meant a bit of climbing, so a lot of helping The Lodger and for The Lodger he wasn't able to continue his telling of the story he paused ...

The Calm Before the Big News: A Quiet Moment, A Bright Future

When things are quiet, we don't tend to write. There's the odd update on The Lodger and Us instagram but there hasn't been a blog post in a long while. I'm happy to report that things are quiet at the moment. Quiet means all is calm and well in the world of The Lodger. When we're in this moment, I'm always half on edge waiting for a curveball but in our almost 13 years of the PWS world, you in a way get used to the quiet times, while waiting for that inevitable PWS unexpected but expected twist. The Lodger is watching his Friday movie, had the best yoghurt he has ever tasted (Plain and Greek if you were wondering, and yes he has had it many times before) and is looking forward to the weekend of not a lot planned. When I say all is quiet, it's our quiet, our unique normality of quiet that unless you're in the PWS world you probably wouldn't describe as quiet. Our kitchen remains locked. Our routine is our routine. Food happens at food o'clock....

The Lodger and Us

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