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Seeking 'normality'

It must be such a comforting experience to be able to send a child to school and not have to worry about how they’re getting on. I feel guilty just writing that sentence. Parenting a kid with special needs does that.. guilt. 
It must be a comforting experience not having to keep your phone near you incase the school ring and hoping they won’t ring but when your phone does ring you’re relieved when it’s not the school but your heart skips a beat when it is. 
Then you answer the phone with your heart racing and you’re told what’s happened... and as you end the call your eyes are tear-filled, as even though you said you’d be strong, it rarely happens. And then you feel guilty because whatever you’re feeling, you know your child is feeling worse. 
It must be comforting to go to pick up and not have to be prepared that your kid had a hard day, that when you open the communication copy, you make a wish to read a positive account of the day and not a day with incidents. 
It must be comforting to…
Recent posts

2563 days on!

2563 days, give or take a leap year, is the amount of days since The Lodger was diagnosed with Prader Willi Syndrome. 

It's been quiet on our blog (apologies) but it has definitely not been quiet in our lives. Update the blog has been on the to do list since May but sometimes things get in the way and sitting down to write a blog post does happen but it just doesn't get finished but we're back now! 



The Lodger recently turned seven years old. I can't believe it either.
I always find during this time of year that I look back to those first couple of weeks of The Lodger and compare him to where he is now.

Just the other day, he told me he was bored playing, the joys of summer holidays, so I asked him did he want a job.
'Yes I do' he replied.

'Ok, how about hoovering the house?' I asked him, fully expecting to hear a negative response but much to my surprise he said yes. 

Did I ever think that tiny baby who couldn't cry would be hoovering the house seven year…

The Last Supper

'Mum, I'm so sad for Jesus having a Last Supper! It is the saddest thing ever. It's horrible. Nobody should have a last supper!'

'Don't worry about the Last Supper'

'How can I not worry. Will I have a Last Supper?'

'No'

'How do you know?'

'It's something you don't need to even think about.'

'I am thinking about it'

'Well why don't you go for a nice sleep and dream of pirates'

'Which pirate?'

'Hook?'

'Ok, Hook is the best pirate. Did Hook have a last supper?'

'No!'

'Are you sure?'

'Yes!'

'I'm so sad about the last supper!'

'Ok.'

'Mum, how can there be Christmas if Jesus is dead?'

'I really think you should sleep now!'

'Mum, I'm not one bit happy about this!'

'I know you're not but how about, you can go for your sleep and forget about it all while you're sleeping.'

'Ok, Mum but I won't be forgetting wh…

Baby freaking Shark

I have spent the last 3 years consciously avoiding anything or anyone or any shark that wanted to sing that song. And I was doing quite well. Not knowing the lyrics, not knowing there were actions, thus then not knowing the actions and not even knowing the tune. I had an inkling something existed that I definitely didn't want to know and I was fine with that. Even happy. Satisfied that I had avoided it all and now 3 years on it would be long gone and I'd be safe.

But then the Lodger went to a new school. And then the Lodger started learning things. And I'm not talking about the learning stuff he's meant to be learning but the other stuff. The little fist pumps he does when shouting "Yes!" Sometimes on special occasions, for example banana on top of his porridge we get a double fist pump.
The toppings on porridge are very important to the lodger and generally, it's quite samey, the way he likes it. Almonds and goji berries, consistent, single fist pump! Ban…

A breach of security

We recently had a breach of security.


Food security that is. 

The Lodgers little cousin offered him some food and he accepted.
How do I know this? He told me.

The Lodger was watching some television and I went in to check on him. 

'Mum, when is morning snack?'

'O, that's not for another hour or so Buddy.'

'Mum, Little Cousin gave me some food and I ate it.'

I paused and rapidly tried to remember what we've been advised to do in this situation. Remain calm, don't punish. Get the facts. Breathe! Count to ten. 

'Ok, and what was it that little cousin gave you?'

'O it was a bit of one of my crackers. ' 

In my mind.. PHEW!

'Ok, well next time Little Cousin offers you some food, will you ask me first if it's ok?'

'I knew it was ok for my tummy.'

'I know you did but next time will you check with me?'

'Ok. Am I in trouble?'

'No, not one bit. Just remember that with your special tummy, you need to check with a grownup …

Blueberries versus Mandarins

I knew it was coming. I was prepared for the ocean of calmness we were in to come crashing down with the giant wave of a PWS moment. 


Did I expect it that Monday? Not one bit. In all honesty, I’m not sure I ever expect it and my heart skips a beat when I get ‘the call’.
Flight or fight mode kicks in. For me, it’s flight mode. I’ll take The Lodger home, wait until the PWS moment has passed, and we’ll talk things through quietly and calmly. Just once. We don’t dwell on it. A consequence is put in place and we move on. 
We’re not used to meltdowns at home. So when they happen out in the world, I feel completely out of my depth. 
I’m unpractised at this. I feel like a rookie. I try to remember everything I’ve read on how to handle a meltdown. Keep a calm voice tone, use positive language, don’t use too many words, don’t interrogate at the moment and keep breathing. 
All easier said than done. 
I read a book a while ago and I’ve reread it several times since.  It’s called‘ Not what I expected by …

Christmas time, mistletoe and breakfast!

I'm about to write a sentence that I never thought I'd write without feeling a pang of sadness. The Lodger is extremely excited for Christmas (that's not the sentence, I'll let you know when I write it.) He, as usual, has it all planned out in his mind with the backup plan of "I know things can change.'

The plan has a lot of detail but it's this line that makes me, of all things, smile.
'Mum, after we see what Santa has left. Oooo lego for me, hopefully. I'll go to the kitchen with Dad and help him make Christmas breakfast'
There's the line. 
Help him make Christmas breakfast.
The Lodger is equally as excited for Santa as he is for Christmas breakfast. 
Now, don't get me wrong, all breakfasts and meals are exciting in this house but when I've been talking to the Lodger about Christmas, his excitement for helping Dad make Christmas breakfast is joyful.


I never thought I'd say that. This is The Lodgers seventh Christmas.   I often think b…