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

How is The Lodger?

I’ll start by answering the most common question we’re asked at the moment (especially now that he’s in his new school): “How is The Lodger?” And I always answer the same way, He’s getting on great. Great, although a great word (and it does contain the word eat , which is a favourite in this house) is almost not great enough for just how well The Lodger is getting on. Terrific. Fantastic. Amazing. Excellent. Continue along those lines and you’ll begin to understand just how great The Lodger is. Historically, whenever I say things are great out loud, that’s usually when a curveball smashes into us and I’m left thinking I should never have said anything at all. But just for now, to remember how good things are, I’m going to say it out loud and put it into the universe. The Lodger is getting on great. Home life: great. School life: great. The in-between outside world life: great. A calm confidence has opened up in him. He is happy in who he is. While we’d love to take all the credi...

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...

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

Search This Blog