Into the land of 'big school' education we go!

The Lodger has started primary school.

I'll repeat that.

The Lodger has started primary school.

If I wasn't the person helping him put on his school uniform, getting his lunch ready, bringing him to school and answering his approximately 10,000 questions on the topic I wouldn't believe it. How can five years go by so fast?

On the first day of school, we gathered in the PE hall to wait for the Teacher to call her class. He was subdued (this is rare!). The hall was busy, loud and filled with a lot of parental emotion!! The Lodger looked up at me and told me he was a little bit sad.

THIS WAS A REVELATION!!! In my mind, I jumped into the air with delight and high fived the crowd. We've been working with The Lodger for a very long time now to identify emotions.

In reality, I took him to the side of the room and we sat down and amongst all the chaos I got to the bottom of why he was a little bit sad. He needed to meet his helper and be reassured that she would, in fact, help him. Easily solved.

As The Lodgers Teacher came to collect her class, The Helper stepped forward, The Lodger asked a few questions, smiled at me and hand-in-hand they left, following the rest of the class out of the hall and into the classroom.

Another milestone reached.

We have just had day three of school and The Lodger is loving it all.

'What will I learn tomorrow?' is his latest pre falling asleep question. It's replaced his usual breakfast related question, so school really is a hit!

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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