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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