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 last weekend for Dad. Telling stories is important for The Lodger and no detail is missed. Dad missed the PWS Family weekend, so he needed to hear all about it. Long work hours means Dad is getting the story in chapters. 

Anyway, a new route, a paused story, challenging terrain... these things add up to a meltdown. It was obvious. I didn't need to search for triggers- they were there. And so were brambles, lots of brambles. The Lodger wasn't prepared for an adventure route. He was prepared for the castle route. He wanted to tell his story- he had to pause it.  

The route was tough - it was steep, you had to climb and find branches to hold. Little brother was speeding along, loving it. 

"I'll help you Mum" said Little bro, as he scaled a really steep slope to help me come down the other side. 

"I'll you help Dad" said Little bro, as Dad tried to manoeuvre The Lodger through the trail.

And my heart broke a little, because I knew Little bro was loving it. I was loving it too. Something different. A new route in the depth of the forest.  It was exciting. It was unpredictable and therein lies the problem.

We knew we had to turn around and go home. I should've predicted that when I chose the new route. If I'd just stuck to the plan, we would've had our walk and gotten home without a meltdown. 

Little bro happily accepted that it was home time. He knew his big brother was sad. So off we trekked, homeward bound. 

My heart aches for The Lodger today. Most of the time we just get on with the day. PWS is there lurking in the background but usually The Lodger shines through. There's lots of things we do daily to make sure it stays in the background but sometimes, like today, PWS crashes into you like a giant unexpected wave. 

And on days like today, the gap is highlighted between who The Lodger would be without PWS. A boy, aged ten, running through the trail, shouting back to Mum and Dad to tell them 'this way!'. Helping his Little Bro, finding the tree swing and jumping for joy. Not wanting to turn around. Loving the adventure of it all. 

It breaks my heart that Little bro will be that boy one day but he will need to take into account The Lodger, his brother who has a disability. He will need to turn around and go home more often than not. 

So therein lies the problem. A need for Respite. To do the spontaneous unexpected things and not have to be always be controlled by PWS and what it brings. Yes we love our child who just happens to have PWS but sometimes a challenging Sunday stroll is just what the body needs and not the emotional drain of a poorly planned trip and ultimate meltdown. Roll on tomorrow a new day. And roll on the search for Respite. To support us all.

The Lodger & Little bro chill in the sensory tent