I knew the question was coming!

I knew the question was coming. I could see it forming on the lips of the parent sitting across from me. She's holding her little girl of about one. I can sense it. She's about to ask 'What age is your little boy?'

There's a split second here where I hesitate. I can lie and say he's one. He's about the size of a one year old. He's sitting like a one year old. Crawling like a one year old. This will avoid the follow up look of surprise, the look of pity, the comments 'o he's small for his age' and the potential questions of why!

I sit and make up my mind. I tell her he's 26 months. I can quickly see her analyse him. She's probably not even aware she does it. I immediately follow it up with 'and your little girl?'

I keep the conversation going with the usual topics of parenthood - sleeping, outgrowing clothes, tiredness etc etc.,

Luckily the class starts before I'm quizzed further.

I don't hold back on spreading awareness. I'll tell anybody who wants to listen all about Prader-Willi Syndrome but sometimes, I just would like for him to just be himself- no labels attached.

He's just that lovely little kid, who always shares, loves to dance and sing, loves music, has a beautiful smile, an infectious laugh. I'd love for The Lodger in his music class to just be himself- not PWS.

I feel guilty for having the thought. I just sometimes like to be PWS free.
A day where I don't have to explain PWS and complexities of symptoms associated with it.

Just before his second birthday, we were at the garden centre andThe Lodger was happily sitting in the trolley, waving at everyone. He's very engaging- everyone always stops to give him attention. He made friends with a woman as we waited in the cash register line. They started playing peek-a-boo and I knew the inevitable question was coming- 'What age is he?'

'He's one' I replied. (not a lie 23 months is still age one)
'Isn't he just lovely' she replied, 'He's the sweetest child'.

I smiled and thanked her and as we walked away- he was smiling and waving- with a queue of people waving back.

It was a lovely moment. No PWS, just The Lodger.

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 ...

Water, milk….

This week we were driving along and Younger bro started listing food. “Apple, raisins , rice cakes” “Ugh” said The Lodger “Mummm make him stop. He’s making me think of food and it’s not time for food!” So, I had to ask my four year old son to not mention food to his big brother who has PWS, even if it’s food that’s ok for his special tummy. I explained we didn’t want to make The Lodger sad. That sometimes food chat can making The Lodger emotional. Then The Lodger adds in ‘unless I talk to him about food first, then we can talk about it’. ‘Is this because of the Prader Willi?’ said Younger Bro “Yes!” said The Lodger. Being a sibling to someone with PWS is complex. There is always something new to navigate but at four years old he understands more than most people. “Water, Milk..” said Younger bro. “Mummmmm they’re things I drink with food. Tell him the rules again!” said an exasperated Lodger. Younger bro is sharp. I could see his cheeky knowing glanc...

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