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 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?