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Tuesday, 15 December 2015

In which Smiler doesn't have an injection. Again.

Sometimes I wish I could drag individual members of staff around with me for a day or two, and subject them to my continual internal monologue revolving around appointments and medicines and letters and all the other boring repetitive minutiae involved with parenting a young person like Smiler.  Maybe then they wouldn't be quite so cavalier about leaving Mr and I hanging for an entire morning.  Maybe then they would realise when we say "we need to have this done by 12:30", we actually mean that this needs to be done by 12:30.  We aren't being awkward, or picky, or dictatorial in any way, it's because we have reasons.

It's the ordinary, newly minted, year nine meningitis vaccine.  To be done in school.  We got the consent form, signed it, sent it back.  The first school nurse asked me if Mr and I could come in when it was to be done, knowing that as cooperative as Smiler generally is, that this (along with nose bleeds, which she's seen) is likely to give her front row seats to the show of a whole nother side.  She told us that without having us to 'help' (=hold him down) she didn't feel she could safely give him the vaccine.  We were fine with this, we agreed that when he's anxious he can behave very unpredictably, and he could hurt someone (or himself), and that wasn't something anyone wanted to risk.  No point in giving him any advance warning, as it would only stress him out and mean he was even more agitated when the time came, so we plotted exactly how it would go, who was holding which limb, and we were all set.

The appointed day dawned.  Smiler's special school shares a site with a mainstream secondary school (attended by Noah and Petal), and in their infinite wisdom the individual organising the clinic (not the school nurse we'd been coordinating with) decided they'd do the mainstream year nines first.  The two hundred plus mainstream kids.  Before the single one that had already involved military style planning, and two carers were needed for.  So, the vaccines arrived at ten, and at 12:30, we still hadn't had that phone call telling us operation Inject The Teen was on.

It didn't happen.

'It's okay, we'll do him in the catch up clinic in two months'

Never mind that Mr and I had spent the morning avoiding starting any jobs that couldn't be walked away from when they phoned us.

Never mind that I'd barely slept the night before, feeling guilty knowing that he was going to hate this, maybe hate me, maybe I'm a terrible parent, maybe he'll hate me forever ... over and over and around and around (welcome to low self esteem and borderline personality disorder with PTSD thrown in just for kicks).

Today was the catch up clinic.

And guess what.

It didn't happen.

And I ended up in a ... let's call it a 'heated debate' ... with the other school nurse who, when I pointed out that this was the second time Mr and I had both completely wasted a morning because of this, thought it appropriate to tell me that she'd vaccinated all the 'ASD kids' (her wording, not mine) with no problems, so she didn't see why we felt it necessary to be involved.  I pointed out that she had never dealt with Smiler when he was in Everyone Get Away From Me mode, so she didn't know what his needs were at that time. 

I was loud, she was loud.

I felt she was brushing off my knowledge of my son.

Maybe she felt I was questioning her knowledge, her experience.

I - irritatingly - ended up almost in tears, while still red hot angry with this woman.

So it hadn't been done at the main clinic.  Then it wasn't done at the catch up clinic.   They won't do it at the GPs  ("your young man is just too complex for us here"), so now Mr and I will have to take him to the hospital to get the damn thing done.  And he's not stupid - when I don't make my usual en route 'no baby, no injections today' promises, he'll know what's happening.  So that's at least an hour of his stress levels through the roof, us spending the morning wrangling him, him missing a morning of school, his teachers dealing with the fallout the rest of the day, and us trying to contain his anxiety for the following week and month and year.

Never mind the lessons to be learned, never mind the email currently being composed by an angry sprite on my shoulder to the person who decided to vaccinate two hundred plus mainstream kids before one problematic one TWICE and waste several child-free two-person parenting hours (a precious commodity in the last week of the school term).  

How does respecting parent carers and their wealth of in-depth knowledge of their children and their needs translate into 'why you feel you need to be involved is beyond me'?  

How about putting Smiler first?  In front of the egos, in front of the (on paper) most time efficient way to run a clinic, in front of the inconvenience of having to have parents hanging around?  How on earth does this reconcile with the oft referenced 'person centred planning'?  

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Tuesday, 17 November 2015

In which I ponder disability Olympics - when parents compete over whose child is the most disabled

I do not get the disability Olympics.   

I don't mean actual Olympics, special or para or bog standard ordinary, I mean the weird competitive mindset some parents seem to get into when talking about their kid with additional needs, special needs, disabilities, or whatever the PC term is this month.  You know about Overly Proud Parenting of Genius Children, right?  The parents with the kids who walked at ten months, were out of nappies at eighteen months, spoke in perfect complete sentences when they were two and could read and write by the time they turned three.  These are the parents who always have freshly washed hair and no dried weetabix handprints on their jeans.  Also an active sex life, tidy home and shoes that match.

Disability Olympics is a kind of distorted reversed version (of the kids end at least) - it's not about how well your child is doing, but completely the opposite.  It's all my child is the most disabled child that there is.  There's that classic oh yes, mine has that too, and also this one upmanship based strategy, often linked to besting anothers achievement in the fields of services or equipment so he's going to get physio/splints/gaiters/wheelchair/bionic legs/personal valet; there's the his doctor said she'd never seen a nose/kidney/white cell count/hair folicle quite that high/low/big/small before tactic.  This shouldn't be confused with the humble brag approach though - usually distinguished by comments such as so I just can't leave him alone for a minute because he hacks my bank account/rearranges the dvds into alphabetical order further broken down by genre/reprogrammes the autocorrect on my phone so it looks like I'm using the wrong their/there/they're.

The calm reasonable big picture part of me wonders if this is (at least partly) about the validation of the carers identity - see how much help/support/bacon my child needs, and I'm the one who says it/sorts it/cooks it for them, therefore the greater their need, the better carer that makes me.  The selfish grumpy bitchy part of me (much more in charge on days like today, in case you hadn't already guessed) grumbles (mostly internally, you'll be relieved to hear) that attendence at a special school is not the holy grail that will automatically mean your child gets all the physio/ot/SALT support that is needed; you as a parent don't gain another halo for every consultant that sees your child; and actually, if your child is in mainstream school with no additional support, and you're able to work, and go out for the odd evening leaving them at home with the teenage daughter from next door as a babysitter then you have no fucking clue what you're talking about.

It's the extremes that people don't see, so maybe when comparing their child to the completely wonderfully ordinary Cousin Fred they think well hang on a minute, he doesn't need any of the faffing that my child does, so obviously my child is a long way away from the average.  Maybe they don't have the opportunity to put it in context.  How about lining up with Cousin Fred on one side and on the other a child with no speech, tube fed, oxygen dependant and a third volume of hospital notes measuring over four inches thick, and then have them pick a side?  

Those parents - the ones who run through a fifteen minute long med routine four times a day; the ones who don't get upset by general anaesthetic anymore because they've seen their child through it so many times now; the ones who know in a glance what kind of day today will be for their child because their body language and facial expression is the only way they communicate - it's those parents that tend to talk it down and then go and get on with it because they're too bloody exhausted to do anything else.

It's those parents - and kids - that remind me it could all be so much harder, and that whatever challenges Smiler faces in the future, they're nothing compared to what others are living with now.  Maybe spotting someone worse off (and I'm trusting you'll know how I mean that) makes me feel my son is closer to the level of that gorgeously ordinary Cousin Fred, and I'm certain Smiler is someone else's worse off too.  It just seems sometimes that the more complex your child is (or life around your child is, by the time you've taken into account the huge amount of admin these kids lives need), the stronger that yearning is to be ordinary.  
So, disability Olympics. Don't get it.

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Rant over. Normal service will resume shortly.

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And then the fun began...

Monday, 9 November 2015

Growing up. Or not.

I'd  had my suspicions for a while, but it was when Smiler turned fourteen that I decided to get a professional opinion.  Sometimes I worry that I'm overreacting, that maybe my insecurities have morphed into some kind of Smiler focused hypochondria - or at least that that is what people will think.  But there are only so many red flags that you can ignore, even when they're small and pale and wave ever so softly in the breeze, and his birthday was the date I'd set in my mind way way back.  

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With Noah in the house the indicators that he's growing up are impossible to ignore.  He's now taller than me - which is not saying much - but he's also the tallest of all his friends by a good few inches, he wears clothes two sizes bigger than his big brother; his (stinky) feet are growing at a rate of knots - in fact an increase of a size and a half in six short weeks meant new school shoe shopping was required this holiday.  He showers every morning, uses deodorant, and has more dark hair on his top lip than I do.  His face has stretched out the past year or so, losing every hint of those squidgable chubby cheeks, and he has the occasional spot or four.  He eats shockingly huge amounts of food, and I now understand that 'I don't know where he puts it all' thing - although not skinny he's certainly slim, but doesn't ever seem to reach capacity as far as dinner is concerned!

Smiler, on the other hand, is not advancing at all.  He wears mostly the same size clothes he was in a year or eighteen months ago; his skin is baby soft as ever, no spots or greasiness; he could go a week without a bath and there would not be even a faint wiff of that musty 'teenage boy' scent; and he hasn't grown a single hair in any of those place you might have expected him to by now.

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When you're waiting for something happen that marks a milestone in your child's life, it's easy to get kind of impatient, to look forward to it, to watch out for any little sign, because you want to be moving on.  It's not like that with Smiler and puberty.  Since he was a toddler, we've been dreading it.  The mood swings and frustration added to his complex communication; the appetite combined with the logistics of a wheelchair user with SLD getting enough exercise; the increase in size and weight of a young person we continue to lift and carry; the complexities of sexual atraction and appropriate behaviour.  So while I want Smiler to grow up, there has always been kind of a reluctance, because of the changes it will bring.  

Every time his hips get checked in Southampton Prof asks if he has hit that growth spurt yet, and we shake our heads.  Because of the orthopaedic surgery he had when he was eight, he only has a limited amount of 'growing room' for his femurs - his thigh bones.  What happens if he runs out of room, I have no idea, and to be honest, I'm too scared to google.  Smiler's spine is curved, and though his scoliosis is mild, when those growth spurts hit there can be major issues with the angles of curvature increasing, sometimes necessitating frightening surgeries involving fusing vertebra and inserting metal rods.  The anti convulsant medication that Smiler has been taking for a long long time has kept his seizures manageable, but epilepsy is yet another thing that doesn't react well to the hormone surges of adolescence, often throwing the hard-fought delicate balance of medication levels out of whack.

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Smiler's birthday cane and went, and I decided to follow my instincts so we were off to the gp for a referral to endocrinology.  Last week we attended the appointment and the doctor we saw examined him and agreed my concerns were absolutely appropriate - even leaning towards caution for having waited as long as I had.  Smiler is showing no signs at all of even the very earliest visible changes associated with puberty.  Next up came blood tests and an xray of his hand to work out his 'bone age', and I can't help thinking it's a bad sign when someone takes measurements of the bones in his hand and then asks me "how old is he meant to be?" 

So now, we're waiting for a letter from the hospital to recall him to an even more specialist specialist, to get the results of those blood tests and find out where we go from here, and that will involve.  So far there's been mention of an MRI and hormone injections and tablets and thyroid checks and then I stopped listening - or at least I stopped hearing what was being said.

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My inclination is to ask "So?  Does it matter if he doesn't go through puberty?", but so far I've been answered with lots of hmm noises and brief comments about the stress that purpetual childhood would place on his wonky heart.

Everything is so bloody complicated sometimes.

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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.

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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Monday, 24 August 2015

School holidays!

Yes, I know, I've been absent without explanation.  So here it is.

School holidays.  Children children everywhere.  Needing meals and clean clothes and new pencil cases and time and attention and thought.

New house.  Needing electricians and plumbers and builders and lining paper and floor sanders and mugs and radiators.

We've been to seven separate appointments at three different hospitals.

Visited Legoland and Bristol Hippodrome and Wales.

Planted seeds and blown bubbles, chosen new socks and painted walls, made muffins and had haircuts.

All in all, too busy doing to be writing about doing.

Usual service will be resumed shortly!

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Sunday, 2 August 2015

But only girls like pink!


Don't know about you, but I often find myself questioning my parenting.  I want the kids to be polite, but not a walkover; friendly, but not dependant; confident, but not arrogant.  And then every so often one of them says or does something that gives me a warm glow inside and I beam with pride.  

Yesterday we were in a big diy store, choosing paint tester pots (exciting!).  Smiler had made a considered choice, but they didn't have any tester pots out in the shade he wanted, so Noah and I went to the customer services desk to ask if they might have any elsewhere in the store, or whether it was worth traveling to another outlet.  The guy at the desk saw the colour we were asking about, and commented jokingly to Noah "this isn't for your room is it?"
No, it isn't. (Solemnly shaking his head)
For your sister is it? (Big smile, raised eyebrow)
No, my brother. (Deadpan)
Little brother? (Quizzically, seeking some kind of acceptable explanation)
No, big brother.  Well ... kind of bigger and kind of littler.  I'm taller than him, but he's older than me. (Important point)
Oh. Bit girly, don't you think? (With a smirk)
Why? (Oh so innocent face)
Well ... because it's pink.  Only girls like pink, don't they. (More than just slightly confused)
But if only girls like pink, and my brother wants pink walls in his room, wouldn't that mean girls would want to spend time with him in his room? 


Smart arse. 

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Friday, 31 July 2015

When a new toy isn't just a new toy

Smiler had a tough week - you know those times everything seems to go a bit sideways and your well thought out back up plans are frustrated too?  That.  Anyway, because he really needed the distraction I suggested to him that we choose a new toy for the school holidays, something that we could keep at the new house and he could play with when he was there.

You see, a new toy to Smiler isn't just a new toy.  It's the looking, the thinking, the finding; the comparing, the concentrating, the choosing; the waiting, the planning, the anticipating.  From my perspective, his excitement at deciding which toy he wants was an activity in itself - he's occupied, he's engaged, he's focused.  Once the order was put in, he told his brother and his sister and his dad about the toy he'd chosen, which required a complex level of communication as they started off with no idea what he was talking about.  Smiler thought about what he was going to do with it when it arrived, and even picked out where (in his new bedroom) it was going to go. Course, it's not difficult when your bedroom currently has nothing - and I mean nothing - in!  The lovely wide windowsill in his gorgeous bay window is the perfect place,  according to Smiler.  So, he has thought things through, communicated with others, and experienced the anticipation involved with delayed gratification!

Our parcel arrived today, and when he heard the doorbell Smiler scooched along the hall to answer the door with me, rewarding the somewhat surprised courier with an unexpected round of applause when I confirmed the parcel had his new toy inside.  Squealing with glee and shaking with excitement as I opened the box, he grabbed at the paper on the top but - surprisingly - listened when I asked him to wait.   What he didn't know was that as well as the toy he'd chosen, I'd ordered three others too, knowing I can use these to occupy him all over again another three times, and each new toy will add more and more play opportunities as they can all be enjoyed together.  But I didn't want him to see them all at once, as that would have ruined the surprise! 

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Finding toys that are safe for Smiler isn't easy - trying to match up the understanding and attention span of a two year old with the strength and size of a thirteen year old is complicated.  He struggles to play creatively, needing to be led by those around him, and if encouraged to play independantly tends to revert to - let's call them 'classic' methods of interaction such as mouthing a toy, banging it on any surface in reach, and turning it over and over and over in his hands.

I've been tempted before to choose toys that will challenge him, be educational, offer opportunities for him to learn new skills; but while I might wish he'd use them in that way, over the years I've learnt that those choices are about me, not him.  He much prefers very basic toys, simply because he understands how they work and what they do, so I've moved on too, and through watching how he plays I've begun to understand what draws him to pick up a toy car over a toy boat (he likes to spin the wheels with his fingers); a drum over a whistle (he struggles with breath control but can make a sound with his hands on a drum); and a plastic figure over a soft toy (the solid shape doesn't trigger his tactile defensiveness the way a soft floppy toy would).

While some of his choices relate to his sensory needs, others are based on his seeking a sense of achievement, or maybe more accurately avoiding a sense of failure.  Because of this, open ended toys that don't have a specific function necessarily are appealing to him - with no expectations of what to do he is free to explore as he wishes.  The new toys he (and I) choose will provide him with enjoyment, which is, after all, exactly what he needs from them.  Non toxic, visually appealing, tactile, safe, strong enough to survive being dropped (or thrown), opportunities for cooperative play, for imaginative interpretation - they tick all the boxes.  Now all I need to do is sort some photos of Smiler playing with his new toy to share with you ... watch this space!

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Wednesday, 29 July 2015

Choosing colours for my glassy nook

This is very exciting - my glassy nook has been ordered!  But now I need to decide what colour to paint it.  I've nosed around and decided I like the Cuprinol garden shades range - I like that you can see the grain of the wood as it's kind of more like a coloured stain than a paint.  But, colours.


I love the dusky grey green willow, so I'm going to go for that on most of the outside,  but I want something lighter on the trim - currently undecided between natural stone and muted clay.  Whaddaya think? 

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Deep jaw pressure and the need to chew

I talked here about Smiler's Sensory Integration Disorder (SID), and some of the difficulties it has caused over the years.  One of the most obvious sensory inputs that he sought was deep jaw pressure.  This helped Smiler relax and cope better with what was going on around him - hurrah - but the way he was getting this was by sinking his teeth into his forearm/hand/fingers - boo hoo.  With his level of understanding and his genuine need to use his teeth, the sensible answer seemed to be to find something else to bite.  He went through periods of chomping on his clothes too, which seemed safer than his body, but was bloody expensive!  You could put a new tshirt on him in the morning and by lunchtime the neck was soggy and littered with little holes, by teatime he'd have made serious headway all around the hem at the front, and if it had long sleeves the cuffs would both be completely trashed by bedtime.  One tshirt, one day.

My thinking was that he needed something easy to grip and lightweight; non toxic; solid enough to provide that deep pressure he was looking for; sturdy so he wouldn't bite pieces off; big enough that he wouldn't swallow (or try to swallow) it; washable or disposable; and not stupidly expensive!  In case anyone else is facing a similar quandary, I wanted to get you started with a few ideas, so here goes...

Teething aids designed for very young children

Depending on the age of your child, these might be worth a try, and have the advantage of being a mainstream item you can pick up in a supermarket so not too demanding budget wise.  


Because they're designed to be chewed (duh!) they tick most of the boxes - non toxic and so on.  It's not tricky to find veco straps to use to attach them to car seat belts to keep them within reach, some have gimmicks which might completely float your child's boat like being freezable, or warmable, or extra nobbly.  Smiler loved them when he first started trying them, but his strong sharp teeth always won, and he'd bite through them. Once he really started chomping on them with his back teeth we knew it was the beginning of the end, and time to look for something that he couldn't destroy with such ease.

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Chewy tubes

These were designed for increase oral motor skills, so to help learn how to coordinate the muscles of the mouth and jaw, and are a brand name, not simply a description!  These look like plastic hammers, available in different sizes, with various textures.  The shape means they're easy to hold (even for children whose motor skills are not great), they're lightweight, easy to wash along with the dishes (an important consideration if they're going to be chomped on and dribbled over for hours at a time) and some children love them - Smiler was not a fan however. 


They're easy to source on this amazing world wide web of ours, just do a search for "chewy tubes".  Expect to pay about £8 each, or £12 if you go to a specialist retailer (you know how it works, tag it as suitable for children with special needs and increase the price).  Frustratingly expensive if your child looks at it once then throws it out of the window!

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Chewigem


A range of things you can chew that don't look like things you can chew,  chewigems look fab for kids or maybe teens who don't want to look 'different'.  Pendants, dog tags (military style, not the canine kind), zipper pulls, bangles - these weren't available back when I was looking for Smiler, but I can definitely see the advantage to having something chewy to hand at all times.  Prices vary depending on which item you choose and whether you source it direct from Chewigem or via another retailer, but to give you an idea the berry necklace is £15.95 and the zipper pull is £11.50.

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Thera tubing


Now this one is a bit out of left field, but in my defence it was suggested by an occupational therapist (OT) specifically for Smiler.  Thera tubing is not designed to be chewed - it is a component of a resistance based exercise program and undoubtedly says in the small print somewhere that you shouldn't chew it, so don't chew it, okay? 

Having said that, you can source it at all the usual online retailers, but expect to find it tagged as 'exercise equipment'.  It's available from some places by the metre (costing anything between £3 and £10, depending on the resistance level and how much you're prepared to shop around), other places you have to buy a box which has about seven metres in as a tube with a hole through the middle (think drainpipe, but much much smaller and squidgy) or a flat band - for chewing purposes (not that anyone should chew it) you want the tube, and check for the brand name, Thera Band, which will be printed on the tubing itself.  The different colours are different resistances, so in that picture up there the softest/floppiest is tan, and the toughest/most firm is gold.


I found a seller on ebay who sold all the different colours by the metre, and had listed some off cuts and end of roll pieces (between 30cm and 70cm) for £1 each.  Those sizes might be no good for resistance training, but perfect for my purposes.  I knotted together several pieces of different colours so there was a choice, and handed them over.  He has two separate bunches which I circulate every couple of days so they get washed and have time to dry properly, and he can choose whether he just wants a nibble or a proper all out chew.

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One last suggestion, and please don't dismiss it out of hand.  It's an idea that was - literally - whispered to me by another mum who told me it worked for her very chompy son when she had tried everything else she could think of.  He was the young man who lost two fingers to infections from chewing on them, and she was really embarrassed to tell me how and where she had found this heavy duty chewy that was obviously perfect for him.


Non toxic, washable, inexpensive, textured, hard wearing... turns out it had originally been purchased for their German Shepherd.  So, my final suggestion,

dog chew toys from a pet shop


So, maybe that's given you some ideas of things to encourage your sensory seeking child to chew.  Individuals can quickly develop preferences, and (if it's manageable moneywise) it's worth buying an identical one of any clear favourites in case of an emergency.  It might sound melodramatic but to some these chew toys can become a security blanket of sorts, and if you know they will feel the need for that security and you can't find that particular toy for whatever reason, you will wish you'd bought a spare!  Different families run to different rhythms, and it can be tricky sometimes to see outside of the box of our own experience, so even if you think it sounds like an odd idea, give it a go.   It might be exactly what your child has been trying to find. 

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Monday, 27 July 2015

What is Sensory Integration Disorder?

Like a lot of young people with complex developmental conditions, Smiler has a diagnosis of Sensory Integration Disorder, also commonly referred to as Sensory Processing Disorder (SPD), Sensory Integration Dysfunction (SID), and a bunch of other variations on the theme.

Very very basically (because I'm not sure I understand the neuroscience angle all that well) this relates to the difficulty some people have in organising and interpreting the messages their brain is receiving from their senses, and determining an appropriate response.  It's not a conscious process but more of an instinctive reaction, and affects everyone differently.  This American website explains it as being like a traffic jam, where sensations are prevented from getting to the right bit of the brain at the right time, so leading to an uncoordinated reaction which can result in all kinds of difficulties such as clumsiness, terrible handwriting, over sensitivity to texture, or difficulty chewing and swallowing.

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A parents perspective

Smiler's SID manifests in lots of different ways - he becomes really distressed at sudden noises for example.  They don't even have to be loud - an unexpected sound, or even a familiar sound out of context - it's as though it causes him physical pain, and his reaction can be pretty extreme, often lashing out at those around him or self harming.

Smiler can often be overwhelmed in busy environments - high levels of multi sensory input (audiatory/sound, olfactory/smells, visual/sight, and tactile/touch) prevent him from being able to tune out what is going on around him and concentrate on his own thoughts.  Known by many within the special needs arena as over stimulation, this state of heightened anxiety and inability to focus often leads to a meltdown - a loss of control, usually ending with a hot and angry and confused young person.  To 'outsiders' it can look like a typical toddler type temper tantrum, and as Smiler is almost 14 this garners a fair few raised eyebrows and even the odd 'helpful' suggestion from members of the public.


Smiler used to self harm every day - he'd bang his head against the floor, pull his hair out in handfuls, and bite his hands and forearms so hard that he often drew blood.  He'd twiddle his fingers around and around in his hair, cutting off his circulation and then be unable to untangle himself, his fingers all swollen and purple. Because of his development we couldn't be sure if he was not connecting his actions to the pain he was experiencing as a result, or if he wasn't actually feeling the sensation of pain.  As time went by we realised that while some of his behaviour was a result of his frustration (often at being unable to communicate with us), sometimes it was a reaction to the sensory input he was experiencing, or he was fulfilling a need for intense stimulation.

As a young child Smiler experienced extreme tactile sensitivity - he could hold a solid hard toy such as a block in his hand, but hated even touching anything soft like a cuddly toy.  Clothes were a nightmare - we had to cut out tags as they would irritate him and he couldn't stop crying, and for a while we put all his clothes on inside out because the sensation of the seams against his skin was intolerable to him.  Messy play and activities such as finger painting were impossible as he would scream as soon as his hands were wet with paint, but loved water - the inconsistency was hugely frustrating.

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Mouthing and biting 

As soon as he had the coordination to bring his hands to his face, Smiler mouthed everything, using his lips and tongue to explore anything he could hold, or bring his mouth to.  Unfortunately this wasn't restricted to checking out if something was edible or not - if he could physically fit it in his mouth and swallow it then then it was fair game (cat poo snack anyone?).  If he was laid on the floor then he'd lick it, unless it was soft, like grass, or bitty, like sand.  It didn't make any difference to him if the surface was the clean(ish) lino in the kitchen or the floor of the bus that was the only place I could put him as I folded up his wheelchair.  If he was sat in front of a giraffe enclosure and could reach the railings then he'd lick them.  If one of the cats sat within reach of him on the floor then it too was checked out with his tongue.  (I know.  Ugh.)


I'm not sure when we recognised that this constant mouthing had developed into what seemed to be a need for him to bite down hard on things.  He usually targeted his hands and forearms, and developed hard calluses on the top and bottoms of his fingers where he bit them repeatedly.  He didn't just bite and release, he was like a hamster on a cartoon who'd sink his teeth into your finger with absolutely no intention of letting go, even as you shook your hand in panic, flicking this little furry creature from side to side, slamming it against the wall or a table...

Google being handy for this type of research, I found that this was a really common feature of SID, the need for deep jaw pressure - somehow it provides comfort - a way of self soothing.  Smiler had discovered this coping mechanism instinctively, but his methods weren't healthy - biting into his flesh was destined to end in disaster, and I had personal knowledge of a teenager who had lost two fingers to infections because of his biting habit, combined with the (very common) related issue of those around him being unable to treat the wounds effectively as dressings or creams would not be tolerated, and because it was a self soothing mechanism for him, their continued attempts to clean the wounds simply resulted in increased biting and exposure to all the bacteria of the mouth.

Oops...

Having already gone on a lot longer than I meant to I'll explain some of the strategies that helped another time, but I want to change tack slightly now to talk about diagnosis.

From an academic perspective I resisted Smiler being officially diagnosed with SID for several years, believing that there is a tendency to over pathologise such activities by diagnosing a disorder when actually the behaviour might be temporary or simply a normal reaction to a situation we're unaware of.  After all, we think nothing of adults who grind their teeth when they're stressed, and others who have developed habits such as gnawing on their nails, or chewing the inside of their cheek, or biting their bottom lip when they're nervous.  I hate walking on sand - it makes me feel physically sick, but I've always considered it to be just one of those things, not a red warning flag of an issue with my sensory processing system! How to balance professionals who seemed to want to add yet another disorder to Smilers (already considerable) list with wanting to access help for him was something I struggled with - still struggle with in fact.  SID is now on that list of his, purely because it is helpful, on occasion, to be able to point to a definitive medical diagnosis as to why (for example) we need to be able to wait in a quiet corridor rather than a bustling waiting room for a clinic appointment.

Although we try not to completely avoid anything purely because of Smiler's SID we don't see the point of stressing him out just for the sake of it, so we tend to pick our battles.  Trying to protect him from anything and everything that might cause him distress would mean we were missing the opportunity to support him to manage that reaction, as well as potentially preventing him from having really enjoyable experiences.  Rollercoasters, for example, were something that we felt he might absolutely detest, but we opted to try one, just once, and he loved it, begging to go around again before he'd even got off.  Over time we've gradually found ways of helping him manage his responses to certain things, and learnt to anticipate activities and situations that he will struggle to handle, but that is a post for another day.  

Does any of this ring bells for you, or do you know it all backwards?  I'd love to hear about the kinds of things your kids (or you, or your partner!) do, and anything you've learnt about ways to manage.

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Friday, 17 July 2015

Disabled Facilities Grant - an update

So, I wrote this, spent hours emailing and phoning and tweeting everyone I could think of, and then got a call from the surveyors supervisor (who knew that was a real job!).

We're the only private high priority case he currently has that isn't already allocated.  Our details will be passed to a surveyor next week, they'll be in touch the week after at the latest. 

As far as I can see, there are two possibilities here.

  • There was no waiting list - everyone who told us there was (including four separate professionals familiar with the process) must have been mistaken.

  • One of those emails or phone calls or conversations or tweets landed in front of someone with the power and authority to do something about it, and they did. 


I got what I wanted, right?  So I should be thrilled, right?  I can move forward, get the things done that Smiler needs done, and never look back, right

But my feelings are mixed.

Yes, I'm glad it looks like things are moving.

Yes, I'm immeasurably relieved that the situation did not get as dire as it could have before our need was recognised.  I did not, I should add, ever leave Smiler sat at the foot of the stairs in jeans saturated with urine.

Yes, my son will get access to the facilities that he needs, which is what I wanted after all.


But what about the parents out there who don't have the time to make those calls?  Whichever of the options above are in fact the case and I know what I think happened another parent might have let the matter lie and their child's needs would not be met.  

We should not have to scream and shout and do research and make demands before people listen to us. 

Smiler is getting what he needs, but is that fair?  I've spoken to parents who waited for two years in similar situations, and that is not good enough.  I'm still up for creating a fuss - it is not okay that parents are given misleading advice.  It is not fair that professionals are resigned to months of waiting for things that should take days.  It is not okay that individuals who don't have the energy or opportunity to challenge get pushed to the bottom of the list. 

It's been suggested to me that these delays are because Bristol doesn't have enough money to meet the needs of the populace.  I understand that that may be the case, in which case clearly the best solution is to :
            (a) ensure people are constantly put off from applying by being told it will take months and months and months.  This means they will find other ways to get their needs meet, whether that will be borrowing money to get necessary works done, or moving when they don't really want to, or coming up with unsafe solutions to manage on a temporary basis.
or
          (b) find out how to make sure it is recognised within central government the number of potential applicants for DFGs in Bristol, together with a reasoned forecast of how this figure is expected to change over time.

If more money is needed from central government,  then BCC clearly has to be able to back this up with evidence.   Evidence of unmet need, reports of complaints, pages of figures demonstrating that cities such as Bristol with major hospitals,  special schools, (relatively) good transport systems attract those individuals whose families need them.  

I get that there are complex issues here.  I know very little of the in depth information required, but I can make some gross generalisation that I imagine are relevant. 

Nationwide, children are surviving birth and infancy with conditions that would have been fatal fifteen years ago, some of whom will have significant additional health, education and social care needs, as well as the implications this has for their parents and siblings.  People of all ages are surviving major health crises such as cancers and strokes, some of whom will require various levels of support for varying lengths of time.  Adults in the UK are living longer, decades past retirement, which combined with a trend towards older people wanting staying in their own homes rather than moving into residential care means a greater proportion of Bristolians are likely to be seeking help to do so, through schemes such as DFGs. 

Proper analysis of these national trends, together with an evidenced explanation of why Bristol in particular is experiencing increased applicants, would surely be a starting point.  But what it comes down to is this.
  • The council should not be putting potentially genuine applicants off of applying by exaggerating the length of the wait.
  • Council departments and staff should not be either tacitly or explicitly encouraging assessors to limit the number of cases they classify as high priority.
  • The process should encourage, not ignore, elements of the legislation which would make the wait more manageable for families.

I'd love to hear what you think, and what you think could be done.  Have you applied for a Disabled Facilities Grant (in Bristol or elsewhere)?  I'd be really interested to hear how it went, and what you thought the weak areas of the process were.  Maybe you're a professional who is equally frustrated by the way it works - please do leave a comment or email me.  In the meantime, I'll let you know how it goes with the surveyor - cross your fingers for me that I haven't pissed them off so much they will now be hugely unhelpful ... but actually, how sad is it that that is a genuine concern of mine moving forwards?

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Wednesday, 15 July 2015

Dream house meets reality

So, we have the house, happy happy happy, now we move in, right?

Vacate our three bedroom housing association bungalow, making it available for another family who need it as desperately as we did eleven and a half years ago, right?

Wrong.

Smiler needs access to a bathroom. He can't do stairs. We've given him the living room for a bedroom, but naively assumed we could apply for a Disabled Facilities Grant to get him bathroom facilities.  

We were wrong.  

You can't just apply, of course not, whoever told you that? *incredulous tone of voice*  Oh no, here in Bristol we put you on a waiting list to be invited to apply.  Standard priority means you'll be on this list for aroundabout twelve months.  Then we invite you to apply, you apply, then we can take six months to make a decision, then if we're feeling a bit broke we can delay paying for a further six months.  You'll be fine without those facilities for two years, right?

Oh, high priority - well that's completely different.  It'll only be about five months before we invite you to apply.  

He's a child young person (gotta switch that in my head somehow!), therefore there is no means test, not that we have any means left over to test.  There is no debate as to his need, nor to what it will take to meet that need.  As a temporary measure, we've been provided with a commode and advised to strip wash him at the kitchen sink.  Trust me when I say this is not working.  

So he's still at the bungalow.  We're paying two sets of council tax, two sets of electricity/gas/water bills, two phone lines, insurance, everything.  And of course still paying a hundred and twenty odd pounds of rent every week for a bungalow that we only want for the downstairs bathroom.

I've read the legislation, put in plenty of FOI requests to try and work out what's going on.  I know I can make an 'uninvited application', but I also know that if I do they will make the decision sooner but release the funds at the same time as if I'd waited patiently on their list 'in the interests of fairness'.  

The legislation sets out a strict timetable for local authorities regarding DFGs, but these only come into force once you've made an official full application.  But what are you meant to do when you're effectively blocked from doing that?  Should I throw caution to the winds, cross all my fingers and toes, avoid ladders and black cats, hold my breath and hope to meet the partly whispered 'if you do the work before you get approved we won't give you any of the money (unless there are exceptionally exceptional circumstances)' criteria?  But surely everyone they label as high priority has these exceptionally exceptional circumstances?  Do they just assume you won't have the balls to risk it?  Do you think you could get some kind of agreement in principle that they would consider your circumstances exceptional and then start the work before you get proper actual official approval?  Surely the reason these statutory timescales exist is to ensure people with a genuine (and agreed) need for adaptations to their homes get them in a reasonable amount of time?

It's been suggested that I 'encourage' Smiler back into pads, as this would be easier to deal with without needing to get him upstairs.  He's been out of them for less that twelve months - how am I supposed to explain this to him?  How is the official advice to simply strip wash a teenager in the open plan kitchen of a family house?  How does that mesh in any way with respecting his dignity and encouraging his independence?  

I've phoned the Accessible Homes people - the council gatekeepers for the DFG.  They tell me they need to talk to their supervisor, the surveyor, the surveyors supervisor.   They tell me they'll be back in touch. 

I've written to my local MP - though technically with two homes I guess I have two MPs - maybe I should get the other one in on it too? - her office tells me they've contacted the council on my behalf and will get back to me as soon as they hear anything.

I speak to some of the big cheeses I come into contact with at the council through Bristol Parent Carers - they exclaim in shock - they can't be right,  surely?  There must have been some kind of misunderstanding...

But no.  It seems this is the case.  If you are assessed as being high priority, you still face a wait of five months before you can apply for the mandatory grant to adapt your home to meet your needs.  

How long without a bath or shower before my child teenager is officially being neglected by me?  How about with no access to appropriate toileting facilities?  Am I supposed to leave him sat in a puddle of urine at the bottom of the stairs, assuring him he is high priority you know, and it's only five months before we can apply, and he'll just have to manage?  That has to be unacceptable behaviour on my part, of course, but how am I supposed to avoid it?  I can't get him upstairs, and I can't magic him accessible facilities downstairs.  That isn't good enough - that isn't acceptable.  But then surely, the system and processes that result in that situation (despite my best efforts) are also unacceptable?  And what can I do about that?

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Please read on with this post to see what happened the day after I posted this one ...

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Super Busy Mum

Wednesday, 8 July 2015

Ramblings


I feel like I'm living some kind of half and half life at the moment - there's the ordinary me doing the ordinary stuff, watching crap on the tv, going to appointments, watching more crap on the tv, then there's the covered in an appealing mixture of plaster dust and sweat, random ripped pieces of soggy wallpaper stuck to my feet bit of me, doing all manner of very grown up things like dealing with energy performance certificates and gas meters and lintels lyntals lintels window related stuff (although clearly spelling is still beyond me).  Logically I'm not sure why owning a place should feel so different to renting one, but it does.  Maybe because the bungalow was a new build, so this hundred and thirty something year old house is the first time Mr and I have found ourselves stripping away layers of someone else's life together, while sipping numerous cups of tea and sharing chips wrapped in paper and commenting knowledgeably about the condition of the plaster under all the wallpaper.


Okay, that's my random thought of the day. Back to the walls.

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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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