Sunday, 4 October 2015

Queue jump guilt

I'm officially uncomfortable about our Disabled Facilities Grant application.

After grumbling about it here and chasing up local MPs, councillors and the like, this happened.  I checked back with the Accessible Homes team, the folk that run the process basically - to be told we would be allocated a surveyor within days.  Which we were.  We now have official permission to apply as soon as our agent gets his shit together all the relevant documentation including quotes, measurements and specifications has been gathered together. (Love you really Dame)

It is unfair to circumvent the system, especially when that very system is in place to ensure a fair deal for those who are vulnerable or in need in some way, so I've been feeling massively guilty about queue jumping.

While I've been assured over and over that there is no waiting list, I've spoken to others who have waited over a year to be allocated a surveyor.  And I'm not talking about people who would feel a bit more secure if they had a few grab rails put in place (although arguably this would be done outside of the DFG system anyway because the cost implication was small), I'm talking about parents who were carrying their disabled ten year old, weighing six stone, up the stairs to bed; a gentleman who had been discharged from hospital after a stroke who could no longer reach the bathroom upstairs and was expected to use a commode in the corner of the family living room; a mother whose MS meant her two sons (aged 11 and 14) had to physically help her into and out of the bath, and on and off of the toilet.  But the official line is that no one is waiting, so there was no list for me to jump.

I didn't want to jump that waiting list, but at the same time I need to put my son and my family first - they need to be my highest priority.  

I guess there is no official guilt to feel, if there is official no list, but when I hear the opposite from so many other people it's difficult to retain the moral high ground.  Think maybe I have officially plausible deniability of having officially done anything officially immoral, but still actual guilt of having actually jumped the actual queue.

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Wednesday, 23 September 2015

Happy birthday Smiler

Hey there Mr Pants ... or should I stop calling you silly names now?  Are you getting too big, too grown up, too sensible?

Of course not.  You sat next to me on the sofa this evening and laid your head on my shoulder.  Your fabulous mop of fluffy hair tickled my cheek as I turned to you and smiled, and you grinned back at me.  "Luff oo." You told me, eyes sparkling, and even as I told you that I loved you too you started the ungainly and uncoordinated process of getting up so you could check your brother and sister hadn't forgotten it's your birthday tomorrow ... since you'd reminded them three minutes ago.

Fourteen - a proper teenager, even though your body hasn't realised that yet.  Your little brother towering over you with the slightly darkening hair on his upper lip self consciously proclaiming that the hormones are now well and truly in control in his life.  But you - you still have those rounded cheeks of youth, that soft blemish free skin, and feet that somehow don't stink out the room every time we take off your boots.

Fourteen years ago you were taking your own sweet time, already more than three weeks late.  But hey, when you started moving you barely let me stop for breath, arriving aided by just a single push, emerging into this world to a midwife with wide eyes and no gloves, unable to believe that you had ben crowning as I waddled into the hospital three minutes earlier, completely incapable of sitting down.  The tv in the room was on, and I remember hearing the fake-tanned white-haired plastic-grinned presenter instructing the contestant to "spin the wheel, see what you get!" in a startlingly accurate description of conception as that midwife frowned at your face, calling through the open door to the hallway that she needed help now.


Fourteen years of living and breathing and growing and changing; learning and struggling and watching and waiting; hugging and handholding and smiling and laughing.

You've learned so much over these past twelve months.  You've begun to understand the finality of death, in your own way.  You've made new friends and missed old friends, reminiscing over times you shared.  You've worked hard trying to do the things that are asked of you, even when we can see that you don't understand why.  

You played music to an audience at the Colston Hall, and begun to sing along to bits of words of songs you like on the radio.  That radio was your birthday present from your dad and I for your last birthday, and you've taken such good care of it, because it brings the music you love right into your hands, under your control.

You have had to deal with so many difficult days, so much pain and fear and confusion and contradiction, but you still smile.  You still smile at me every single day.  You love the dog and your friends and your books and your music, and you love us - your family - with a simplicity that slides between the cracks of my worries and straight into my heart.

I love you, my gorgeous young man.

Monday, 21 September 2015

My two homes

Life is strange at the moment - we're in the slightly odd (but I suppose in some* ways enviable) position of having two homes.  No, we're not secret millionaires or anything, we just can't move out of the bungalow we've been renting for the past (almost) twelve years into the house we've just bought until the adaptations have been done that give Smiler a safe bedroom, and access to a sink, toilet and shower.  We now have planning permission for the extension on the back of the house that will be our living room, as Smiler's need for a downstairs bedroom means we can't use the obvious choice, but we're still waiting for the council go-ahead to put his bathroom in.  

(*as long as you ignore paying council tax on two houses, as well as gas, electric, and phone lines for both!)
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Although Smiler, Noah and Petal have been attending schools on the same physical site since the beginning of the school year for the first time ever, they need to be in half an hour before him.  Thirty minutes might not seem like much, but to get from the bungalow across town - in the morning traffic of course - takes fifty minutes at the time you have to leave to get them in on time, but only twenty five to get Smiler in.  This means if Mr drives everyone in, we need to leave the house at 7:40.  If he only has Smiler, he can leave at 8:30.  This, together with the opposite mismatch at the other end of the school day, means we're living separately for most of the week.

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On Sunday evening Mr drives us over to The New House, dropping off Noah, Petal and myself then driving back to the side of town with Smiler to spend the night at The New House.  Monday morning, Petal and Noah walk in to school, while Mr drives Smiler over for the start of his day.  Mr and I get on with whatever needs doing during the day - painting walls, grouting tiles, sanding floors - until Mr heads off to collect Smiler from school, drives back here (The New House), and we all have a cuppa and chat about what everyone has been up to.  Then Mr drives Smiler to The Old House, where they have tea, sort washing (washing machine still over there) and spend the night.  Noah and Petal do all their usual evening stuff - keyboard practice, homework, have tea - with me here at The New House, before we watch an episode of Warehouse 13 and then they brush their teeth and settle in the rooms.  They don't go straight to sleep, which is fine, but at least they're able to relax by themselves, read, listen to music quietly, play cards, til they are ready to snuggle up and snooze.  It's lovely to be able to be so much more relaxed about bedtimes - since they each have their own door and light switch and curtains here I know they aren't disturbing one the way they do when we're back at The Old House.  Because Noah and Petal have Scouts back on the other side of town on Thursdays, we head back over together after school, tea together in The Old House, they go to Scouts.  Then we all leave early on Friday morning, so they get in on time, and Mr and I spend the next thirty minutes trying to keep Smiler occupied in the car, then head back to The New House.  After school we all have tea together in the new house then, once Friday traffic has subsided a little, we all drive back to the other side of town to The Old House, where we spend the weekend.

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I'm exhausted just writing it all out!  Of course it makes me feel shitty because I'm still not cleared to drive, so Mr has to do all of it, and I feel guilty for having anything on during the day as it means he needs to chauffeur me there and back, and hang around if I don't seem 100%.  There's  been too many occasions that he's left me at a meeting somewhere then got a call an hour or two later letting him know I've a fit and being taken to hospital.  At least if he's with me he can take me home and let me sleep it off.  That's another reason I can't be in sole charge of Smiler of course - the potential consequences of him being unsupervised because I've lost consciousness are too scary to contemplate.

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Have you ever had to split your time as a family?  Any tips?  Do you look back on it fondly as a time you didn't have to share the remote control, or were you lonely? 

Thursday, 27 August 2015

Smiler plays with (toy) fire

I wrote here about how it can be difficult to find toys for Smiler - the mix of his learning difficulties and his sensory needs and his strength and his size make it complicated.  At the age of 14 he gets the most enjoyment from toys aimed at toddlers, but having been at that stage for maybe four or five years now, it is becoming tricky to find anything new!  Hopefully that might go some way towards explaining my excitement in finding a whole group of toys he hadn't shown the slightest interest in before.  

These wooden toys, manufactured under the brand name of Grimm, are available from a range of places, including where I got these - a family focused UK based website called Little Acorns to Mighty Oaks.  Great range, speedy delivery, and (importantly to me) not charging daft amounts.  Their range of Grimm toys is extensive, and I found myself wanting pretty much all of it - not just for Smiler, to myself.  Take a look, and let me knew if you do too - Mr absolutely does not get it!  {Not a sponsored post or anything like that by the way, the toys are just that great, and the online store just that impressive!}

Anyway, I wanted to share these photos of Smiler playing with one of his new toys from Little Acorns.  This was the one that he had chosen from the website (on a particularly taxing day when he (and I) desperately needed distracting) and as soon as I handed it to him, a piece at a time, I knew he'd remembered - "fames! Fames ummy, fames!" [Flames! Flames mummy, flames!]
But did he want to fit the pieces together to make a single multi-coloured flicker of fire?  Of course not, that would be boring.  Instead he made himself a beard, and then a beak ...
"Ud ... ud me" [bird ... bird me]

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Have a quick sniff, maybe a crafty lick when no one's watching - actually not a problem, as the dyes used are non toxic - then instantly transform them into the snapping mouths of crocodiles, playing together.

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 And ears.  The face there, that's because he was he was vocalising - loudly - I can only imagine he was checking whether the new ears were working...

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Feeding the orange crocodile, and sliding the littlest flames in underneath the tower . . . As you can see, these beautiful wooden shapes have already brought Smiler a lot of joy, and they're so lovely to touch, so deliciously more-ish-ly tactile, that we've all been joining in - I've had to remind Petal and Noah several times to let Smiler have them back!  There are not many things - be they games or toys or even conversations - that all three will sit together and enjoy, but these seem to have hit the spot!

I actually got a few others at the same time (because I couldn't bear not to) from the same series, and there are a few more I'm trying to work out how to slip into the house unnoticed, but if you're struggling to find something different for a young person like Smiler, then I would seriously recommend you go and check them out!  Even as an adult I'm a bit tempted to get one for myself - rearranging it on my windowsill every so often as a piece of abstract art I guess!  They are just that beautiful.

Have you struggled to find toys that suit your child?  Have you come across any gems that you think I should check out?  Any and all suggestions gratefully received!

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