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. House rules are followed. Exercise is a daily priority. On average, there's a daily negotiation/misunderstanding/expectation not met by The Lodger eyes for us to work through/solve/leave as a mystery forever. We continue to help him reach his maximum potential that the social worker we met when he was six months old guided us towards.
We're working on his independent skills, hence the yoghurt excitement and joy, as he chose them himself in the shop. We won't mention how he darted across the zebra crossing without a care in the world. He knows the crossing the road theory but the excitement of visiting the new supermarket for the first time activated his tunnel vision, and I was reminded once again that the one to one support he will need his whole life is real, justified and vital.
The Lodger being The Lodger portrays in the outside world a hidden disability. It's not often obvious. Recently, he and we have been sharing where he'll be going to school next year. Primary school is almost over (breath, enjoy the last few months) and he's on to his next big adventure. He's one of the lucky few, who has gotten a place in a special school.
For me as a parent, knowing that a special school will be my son’s future means reassurance—structure, understanding, safety, care, and joy. It is a place where he will be truly supported, not just included. It offers the stability he needs, the expertise to navigate his challenges and the compassion to help him thrive. We all agree, we think he will shine.
But to an outsider, this choice often brings a realisation: Prader-Willi Syndrome is so much more than they thought. It is not just a diagnosis; it is a complex reality that requires constant vigilance, specialised support and an environment built around his needs.
A special school is not just the best option for him—it is the right one.
Where you see special, we see essential.
Where you see special, we see opportunity.
Where you see special, we see belonging.
Where you see special, we see the maximum potential.
Where you see special, we see our son The Lodger thriving.
I think what resounded with us most was, when we told The Lodger about his next school and that every student there has an additional need, his response made our decision the absolutely right one for him
"Everyone. Everyone has an additional need. I know not PWS but other needs. This makes me so happy!"
Here’s to the next school. We’ll cherish these last few months at his wonderful, supportive primary school, grateful for all it has given him. But now, we look ahead—planning for the next step, where he will continue to be understood, supported and thrive in the environment he needs.
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