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Saturday, 4 July 2015

Smiler and Open Up Music

So proud of Smiler, and wanted to share it with anyone out there who might read this.  

It feels a bit like that advert for Calpol (all hail calpol), you know, the one that says 'if you've got kids you'll understand' - well, if you live in that world of special needs / additional needs / disability / whatever we're calling it this week,  you'll understand.

Smiler has been working with the folk at Open Up Music at school for months, which cumulated in a performance at Bristol Colston Hall on Thursday, which kicked off the Fast Forward Music Festival.


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I'm struggling to find words, so here are some photos to show you how it went.


Smiler using the fine motor skills he struggles with on an ipad app developed by Open Up Music with him - long slow movements - a real challenge for Smiler, but he was fab!  Note the tshirt - a gift from the organisation that Smiler has asked to wear each day since.

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Here's Barry,  conducting this incredible school orchestra (including Doug playing the cello) - you can see how enthusiastic and utterly involved he is, and just look at the kids - they are completely focused on him.  His passion and perseverance when it comes to inspiring the students is amazing, and the vision and hard work of everyone at Open Up Music has created something really special.

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...and we didn't know this bit was coming.   Smiler had stopped playing the ipad and was shuffling on his seat - I wondered what he was up to, but it turns out it was time to him to move to a different section of the orchestra to play another instrument...


...which he did with aplomb, although also with his back to the audience.  Ah well, you can't have everything.

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Loads of staff from the school had come along to support the orchestra, and it was not only the families that got a bit misty eyed.  Although school is always really positive about Smiler, so much of what you do as a parent is unavoidably concentrated on what your child/teen can't do, or struggles with.  Those dreaded DLA forms, the hospital appointments, wheelchair clinics, housing adaptations (don't get me started!), prescriptions, physiotherapy, splints...  This opportunity focused entirely on recognising, supporting and celebrating the music that this far from ordinary school orchestra created, so thank you, Open Up Music, for sharing music with us all.


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Tuesday, 23 June 2015

A scarily long to do list...

Eek - look how long it was since that last post!  Well, a quick update with regards to the dream house - we bought it.  We completed on Monday, so now have a to do list half a mile long, including submitting plans for the extension for planning permission, stripping decades of wallpaper off of all the walls, taking down a stud wall, taking up lots and lots of carpet, and sanding down lots and lots of woodwork.  This may take some time...

Tuesday, 26 May 2015

school holiday shenanigans

So the kids are off school, and whether you're in the hurrah because I love having them home or the how long until they go back camp, or somewhere in the middle with a foot in each depending on the day (that's me), you're probably busy so I thought I'd share a few photos of the disgustingly Stepford-family type things we've been up to.  


...feeding the ducks...


 ...and admiring the pretty weeds at Keynsham Park.

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Four leaf clover hunting at Ashton Court...


...and munching on a picnic in between climbing trees and catching tadpoles...


...while Smiler took a liking to these railings...


...everything so so green and healthy looking!


Of course Eli came too.

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...and yep, there's Smiler enjoying the picnic.  

On second thoughts, probably not Stepford family material.
They wouldn't have nearly as much fun.

How has your half term been?
(I know it isn't actually meant to be called half term any more, but hey, I'm old.  
subtext : tough, I will call it whatever I want) 

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Tuesday, 19 May 2015

in case you missed me...

...well, Smiler's ordinary illness turned into another long and complicated thing, but (touch wood) we're getting back to normal now.  I'm not good at sitting doing nothing so during long nights watching over Smiler at home and in the hospital I kept my hands busy crocheting a blanket for friends expecting their first child this September.  Petal was so taken with it that I've begun one for her too, for her new room, though whether it will be finished in time - who knows!


More details another time, I just wanted to explain why abstract Lucas has been so quiet the last week or so, and as Smiler is now on the mend I can get back to my usual nonsense!

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Tuesday, 5 May 2015

ordinary illness


It's weeks like this that remind me all over again about the sheer relentlessness of having a child - correction - teenager with additional needs.

He's been ill.

Just a cold.  

Complete with headache and coughing and a runny nose.

No big deal.

Just a cold.

But he can't blow his nose - he doesn't get how.  
His temperature regularly in what's technically a 'danger zone', because his body isn't able to regulate it effectively.
Needing attention around the clock.
Like a tiny baby, or a needy toddler, or an elderly relative.
But he's none of these.  
He's thirteen.

Just a cold.

Not the dramatic spontaneous nosebleeds that mean we need to get him into a&e for artificial clotting factors and maybe a transfusion.  
Not any of the surgeries we've been researching for years, reading medical journals and questioning consultants about.
Not anything from the list of health challenges he's "likely" to face - leukemia, kidney failure, intracranial hypertension, testicular cancer... it's a long long list.

Just a cold.

Just a week without three solid hours of sleep.  
An entire week during which I have not crossed the threshold of the front door.  
Taking temperatures hourly, and basic neuro obs to check if he's hallucinating or slipped into status (basically an unending seizure) because he hasn't been able to keep his meds down.  
Standing in front of the fridge, realising that I've only eaten cereal and bagels for the last five days, and now there's no milk or bagels left.  Cannot comprehend chosing something else to eat - everything else is just too complicated.
Reordering meds because he finished the new bottle of calpol already.  Yes, I know we only got it on Tuesday.
Washing sheets and towels and pyjamas and blankets, all covered in sweat and sick and snot and spilled drinks.

Just a cold.

Just constant sniffing and sneezing and coughing and groaning.  
Throaty pleas for another familiar film, so he can zone out while being comforted by the know-it-off-by-heart dialogue.
Looking at me with pain in his eyes, asking without words why I'm not making him feel better.
Slow snores, catching in his throat, as he dozes on my lap.

Just a cold.

Just the all too familiar rhythm of Mr Manley and I, playing tag with times and temps and meds, each needing time out, away from the grumbling groaning moaning sticky sweaty snotty young man we both love dearly.

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