Skip to main content

Steak is my favourite animal.

Image
By

By Rory

The Lodger loves cows. They are his favourite animal. They are also his baby brothers favourite animal because the Lodger decided they are. 


Cow watching!


The Lodgers birthday was recently. A huge day in his and our life. 10 years into our journey of discovery and all the other things Prader-Willi Syndrome throws at you.


He wanted the perfect birthday. Don't we all on our birthday. Unfortunately the Lodgers idea of the perfect day for our birthdays doesn't always live up to his high standards. Or what you'd actually like to do on your birthday. And this can lead to unhappiness with the plan. 
Things have to happen certain ways. And sometimes for example if I had a glass of orange juice for my last birthday breakfast I obviously have to have one this year. And probably, every year. Routine is important. We created that monster ourselves.

This year my birthday was surrounded by much sobbing and stress as when the cake didn't work first time (and I was OK with it, it wasn't me sobbing) I decided that strawberries and cream would be a perfect birthday cake. But not in the Lodgers eyes. It just didn't meet his narrative of what a cake should be. Especially a birthday cake. 

We tried to go for a swim but apparently that isn't something you do on your birthday. In the Lodgers world. 

Anyway after much anxiety and stress the Lodger took himself off for a lie down. He'd very much wound himself up on trying to create the perfect day, for himself, for me, for my birthday, on his terms. 

I know it's complicated. So is PWS.




Anyway apart from generally dreading the arrival of our own birthdays and constantly wondering what narrative they will take there's the added stress of will the Lodger allow himself to enjoy his birthday. 

And again that's on us. So as we know the Lodger isn't a fan of surprises. After all they may not be the surprises he wants. So we dropped the birthday present hints and he was happy. We asked what he wanted for dinner and he said you decide. 

This was potentially dangerous. He definitely didn't mean that. 

I moved to choices. He was happy with a barbecue. After more choice we settled on steak. Everyone was happy.

The Lodger birthday went well. All his expectations were met. Everything was on his terms. He had breakfast in a hotel. He did his birthday treasure hunt. He has birthday specialised meals. He got to watch a movie. And he had his almost solo chosen birthday dinner. Oh and off course his special birthday cake (which is banana bread, in the shape of banana bread but with candles so it's called banana birthday cake) 
It's so different (exactly the same) to actually banana bread that he  said, "Mum this banana cake reminds me of banana bread. You must make that again sometime."

Eventually after an actually lovely day with almost zero anxiety or stress I put the Lodger to bed and as usual he thanked me for the best dinner ever (which he says every night) 

He cuddled up, closed his eyes and said "Dad, Steak is definitely my favourite animal."





Labels:

Comments

Post a Comment

Popular posts from this blog

Turn around and go home.

By
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 las
Post a Comment
Read more

Hunting Nuns

By
By Rory Today we went hunting nuns. It a past-time I hadn't expected to be partaking in when I woke up this morning but that's what was decided we would do so we did it. I should explain.  The Lodger loves witches. His favourite witch is the Grand High Witch.  While some years ago we worked through the logic that the Grand High Witch was not real we discussed actors.  Now obviously, his favourite actor is Angelica Huston.  She lives in America so we learnt everything about her.  We learnt she went to school in Ireland  In Kylemore Abbey.  We now visit Kylemore Abbey. Alot. The Lodger likes the house which was then the school.  He likes the bus to see the Connemara ponies and the Kune Kune pigs. I like the gardens.  We now go there to hunt nuns.  Unfortunately today we didn't catch any nuns but we did do some research. We investigated every picture of the nuns. We read all about the nuns. We looked in odd places in case a nun might be there. But there were none to catch. We
Post a Comment
Read more