Friday, 29 April 2016

Off Piste

When people first discover I have a son with significant and complex needs, their instinctive reaction is often a slight but detectable head tilt, and a fleetingly brief expression of discomfort rapidly replaced by a somewhat sad, somewhat constipated (I can never quite figure it out) half-smile. Then to fill the thick, awkward silence I've just induced comes, 'I'm sorry. That must be hard.' 

I'm not in the business of tiptoeing around issues and my inner monologue regularly goes AWOL at the most inconvenient of times, which I'll admit, sometimes gets me into trouble. Bull in a china shop springs to mind, but anyway, in scenarios like I've just described, I think it's probably a positive thing. 

Truthfully, it is hard. Truthfully, as any loving parent would be, I'm frustrated by how difficult everything is for my child. I abhor above anything his medical issues- the brain damage; the unpredictable seizure whirlwind that sweeps through at random leaving a litter of broken skills in its wake. This stuff sucks arse. Yes, this stuff is hard.

But why are you sorry? And seriously, why, when you convey this to me, do I suddenly feel the urge to pass you the Dulcolax?! As I understand it, apologies are offered in one of two situations. One-when you've fucked up and need to make things right. Two- when someone's died. Unless I'm missing something, learning of a person's disability or learning they care for someone with a disability ticks neither of those boxes.

As much as I know it's probably not reflective of anyone's explicit intention, this knee jerk response speaks volumes about how, even in our enlightened, socially tolerant (!) 2016 state, we still view disability as an awkward, clumsy taboo. Apparently it's something that needs shrouding in sorries because we inherently see fuck-ups and grief. 

My son, and the countless others like him, are not fuck-ups. And trust me, honestly, there are times I need to remind myself that. The grief thing is tricky, and I can't help but think that perhaps if our culture wasn't so goal-orientated and competitive, the grief wouldn't be so much of an issue.

 As parents of disabled kids, we often find ourselves grieving the child that wasn't - the boy that met all his milestones and hit all the arbitrarily imposed tick boxes for a successful life. And by grieving the child that wasn't we so often miss out on the child who is. The boy that's right in front of us. I don't want to be that parent, so slowly (much more slowly than I like to admit) I'm stripping away those stupid restrictive boxes and pre-determined pathways that dictate what life satisfaction looks like. I'm going off-piste, and if disability is ever going to be viewed through a positive lens, I need you to join me.  

When I was visiting the States a couple of years back, a friend took me to Multnomah Falls in Oregon. Having lived in Wales for a few years and walked the Brecons most weekends, I was a little bit excited about seeing a giant American version. For all my States mates, I apologise profusely for what I'm about to say and please don't hate me forever, but.... well, it just wasn't all that great. The landscape was stunning, but the Falls themselves? They'd done that 'let's make is safe for tourists and put safety fences up and tarmac down' thing, and, as much as I tried to get past it, that kinda killed the whole experience for me. Was it safe? Yes, totally. Could you buy a nice latte from the cafe at the bottom? Absolutely. Could you pee in a sanitised environment? There were even loo seat covers. Was it genuine, and authentic, and raw, and real? No, not so much. 

Going off track is never the easiest or safest thing to do. There's the very real chance that you'll fall off a cliff, or step on a snake, or get bitten to death by huge red ants. You might even have to re-route a few times, or climb through a field of cows, or get bitten on the arse while you're pissing in some stinging nettles. And this is my life, most of the time. Negotiating shit I have no clue about, facing up to situations way beyond my skill level and, for the most part, blagging it. BUT. And here's the beautiful but. Going off track makes you feel alive. The itching, the lack of caffeine, the constant re-routing all pale in comparison to the incredible sunset you just saw from the best vantage point ever (a vantage point completely vetoed by the health and safety tarmac brigade). Or catching a glimpse of that rare bejewelled bird who steers well clear of the tourist areas and seeks solace in the wilderness. Or seeing those crazy colourful little flowers that struggle to push through the cement of the easy paths. These are the things we miss when we're constantly craving the easy way, the way most everyone else chooses to go. 

For me, craning my neck and straining my eyes in the direction of where everyone else's child is and where my kid 'should be' does nothing except blinker me to all the amazing stuff right where I am. This week B gave his carer a kiss. Completely out of the blue, when we were playing together in the lounge, B smooshed his face up against his carer's cheek. And smiled. I wish I could convey how mammoth that is for us, and for B. A kiddo with autism, who rarely seeks out contact or interaction- that kiddo kissed his carer. An unmistakeable and deliberate show of affection. That was my ultimate sunset view. This week he's also been persevering (something he's not great at) at trying to turn his little trains on. They have the most bastard fiddly switches, not great for kids with fine motor issues, and this week we've been working on helping B to turn them on himself instead of just doing it for him. Every time he hands us a train we say 'pointy finger.' Do you know what he does? He only bloody sticks out his index finger! He gets it and HE STICKS OUT HIS FINGER! That's my beautiful rare bird right there. 

Every day I realise more and more that he has as much to teach me as I do him. Patience, love, respect, and how actually, going off the beaten track is maybe, despite all the shit bits, the most liberating thing we can ever do. Thank you B, I love you. 

So next time someone mentions disability, please don't perpetuate the pity party. Instead, come join us. The crap stuff is crappier, but the stuff you experience going off piste is more life-inducing than you can even imagine. After all, the higher the mountain, the better the view right?

Tuesday, 19 April 2016

Sizz City

In the city of Sizz lived a mighty fine mix
Of Trumpers, Ba-Bators and frilly Farzicks
Each creature was different, it made things quite fun
Important with ten different jobs to be done

The Trumpers would toot on their Flug-a-Fone flutes,
While Ba-Bators created the most brilliant boots
Boot-shoes are fantastic for shoeing your feet
And Sizz-lers the best kind of shoe-ers you'll meet 

The Farzicks helped too in the most helpful way
Their legs were so stretchy they walked in one day
The distance that most in a year could not manage
Delivered shoes swiftly, all new and undamaged

Sizz-city was truly an excellent place,
Each which-way you looked was a friendly-ful face
Til one day a new mayor strolled right into town
He wandered straight in and he tore the place down

The Sizz-lers, (I hate to inform you but must)
Were a little too free in their giving of trust
They loved their new mayor by the generous heart-ful
Made dinners, picked flowers, brought boots by the cart-ful 

But this mayor (by the name of McGubbins Magoo)
Was super-smart clever, he knew just what to do
He hatched up a plan in his brainiest head
'I won't be the bad guy', he thought, 'No, instead

I will show them their differences, shed a new light
So a difference is no longer good in their sight, 
But a most awful thing that must quickly be banished'
Then that devious McGubbins took off and he vanished

He called for a meeting to make some new rules
The first thing to change, he insisted, were schools
Long-legged Farzicks were too tall for the buildings
Most Sizz-lers objected, but the mayor was unyielding

Ba-Bators, of course, thought themselves mighty grand
Without them there would be no more boots in the land
And all feet need shoes, it is factually true
And Ba-bators made many in rainbow-esque hues

The Trumpers had nothing to offer a school
It's true that the Flug-a-fone music was cool
Their brains though, a little small-minded at best
Not one single Trump-child passed alge-count test

The plan! It was working! Right down to the letter!
Each person was thinking their own type was better
Mayor Magoo, well he didn't have too long to wait
Those silly old Sizz-lers snapped right on the bait
Sly Magoo really knew how to rile up a crowd
Working up from a whisper to shouting mad loud
'Children of Sizz, you must listen to this.
This sparkly city has lost all it's fizz
To fix it, he said, there is work to be done
There is change to be had, and this change will be fun'

'From now on' he bellowed, his voice deep and boomy 
'Your schools will be better, less crowded, more roomy
Ba-bator kids' classrooms will be in the West
Where they'll learn tricky things and pass alge-count test

The East will be home to the tooting flute Trumpers
Whose classes will fail (well, we know they're all flunkers)
And as for the Farzicks, they're a little too high-
Their lessons up north, in the northern-most sky'

So the Sizz-lers (who now thought that difference was bad)
All stuck to their own in case others were mad
Old friends were abandoned and types stuck like glue
Knowing which one was what one and what one was who

Well then pretty soon things began to go wrong
Ba-bators discovered they needed a song
Precisely the song from the Flug-a-Fone flutes
To help them keep making their rainbow-hue boots. 

The Trumpers and Farzicks sat twiddling their thumbs
Left out in the cold, teachers labelled them dumb
The things they did best weren't allowed any more
And it hurt them a lot, made them sore to the core. 

The Sizz-lers (all types) got more sad by the day
'Til the smallest and wisest Farzick had her say.
She cleared out her throat with a sweet gentle cough
Spoke three simple words- 'ENOUGH IS ENOUGH.

Since when did we all go completely doo-lally?
For three weeks I have not seen my best Trump-friend, Sally
I am different and bad, so she's told by her mother,
But difference, perhaps, is why we NEED each other

Ba-bators need music to keep making shoes 
The best kind of boots with their rainbow-esque hues
The tunes come from Trumpers who make such sweet sound
The sweetest and soundest for ten miles around

Our super tall legs mean we walk for one day,
And reach places and lands super far-far away
It makes us quite handy for dropping off boots
Those boots made to toots of the Flug-a-Fone flutes

McGubbins Magoo is a bad sort of mayor
A mayor whose small heart is not able to care
For difference is definitely NOT a bad thing 
That difference is what makes our Sizz truly zing 

So Trumpers, Ba-Bators or Frilly Farzicks
Let's change this around, and let's change it round quick
Sameness is dreary, but difference is fun
Difference is teamwork to GET THE JOB DONE!'

So the Sizz-lers got really quite smart on that day
The day they sent Mayor Magoo on his way...

Thursday, 31 March 2016

The A word

This month is autism awareness month. I know it seems that every single day is taken up by some awareness raising cause, but this is something that really doesn't get the societal spotlight it deserves. Let me explain. 352,197 people in 2013 were diagnosed with cancer. That's about 1 incidence of cancer for every 182 people. And we've all heard of cancer. Money is spent on educating, awareness raising, researching, preventing. You name it, it's probably being done, and absolutely rightly so. Cancer is a cruel and indiscriminate disease which continues to destroy lives daily. 

Now before you get your knickers in a twist about the slightly controversial link I just made, let me be clear. I DO NOT think autism is a medical disease in the same way as cancer. It's not primarily physical and it can't be cured with conventional medicine. It's not something to be devastated about and it certainly isn't a killer. My point was merely this. Autism spectrum disorder currently affects approximately 1 in 68 people, over three times as many people as cancer. And yet autism is repeatedly treated like the dirty little secret no one wants to address; sidelined by society because it's still not absolutely clear what exactly we're talking about.  

If you'd have asked me nine years ago what autism was, I might have mumbled something about Rainman under my breath and moved the conversation swiftly on. I could have told you every little detail about bi-polar disorder from a painfully personal perspective; the intimate decor of the local psychiatric ward, the benefits and side effects of various antidepressant and antipsychotic meds, the ins and outs of when an overdose needed medical attention and how to change dressings on self-inflicted wounds. Why? That was my experience. That's what I knew about because that's what I lived with. But autism? No clue. That conversation would have been punctuated by a probably long and definitely awkward tumbleweed moment. I used to work as a teaching assistant in a high school supporting kids with emotional and behavioural difficulties, and I remember how much admiration I had for my colleagues working with the SEN kids. I distinctly remember thinking how I could never do that - I just didn't 'get it.'

Fast forward a few years and here I am, a fierce advocate for the autism community. More specifically, I've become a semi-professional squeaky wheel and local authority pain in the arse for my very own B, who has multiple diagnoses including 'severe autism spectrum disorder.' I don't really get the severe part, if you're on the spectrum then you're on the spectrum and every individual will have their own challenges to face as part of that journey. I think they mean 'low functioning' which is a label I have come to absolutely hate, but which paradoxically is a label that often gets B the support he needs. I can't speak for every one of those 1 in 68 people, but I can speak from my personal experience of autism. And, being honest, it's a whole mixed bag of crazy. 

I've been following the current BBC1 drama 'The A-word' with interest, and it's brought back into sharp focus some of those older memories that had started to soften around the edges.  One particular scene this week had me in tears- a heated and brutal exchange between the parents of Joe, a newly diagnosed 5 year old. Alison has just pulled Joe out of school in an attempt to exert some control over her new-found chaos and protect her baby from the outside world. Paul is desperately trying to do the right thing, with no real idea of what that is. 

Alison: "This is about Joe, it's not about me...."

Paul: "Is it? Is it really? Do you know why I think you took him out of school?"

Alison: "Because I love him...and I don't want him to be a condition."

Paul: "It's because you don't want anyone to know, because you are ashamed."

Alison: "You think I'm ashamed? Of my own son?"

Paul: "Of Joe. Of yourself, for not spotting it sooner. Of us, for having him. Of me. And finally, just to round things off, you're ashamed for being ashamed in the first place."

Suckerpunch, right there. That scene was absolutely on point, and captured in one dialogue the constant emotional conflict of having a child who is different. By the time B got an ASD diagnosis at 26 months (which is early for the UK), I had already figured it out myself and it came as no surprise. He ticked every single early warning flag listed on the National Autistic Society website, and I had been dealing with such extreme behaviours for such a long time that the diagnosis was actually quite a relief. But the emotions were the same. I felt like I'd lost a child. And then I felt bad for feeling that way because my child was right there in front of me. I was angry at myself for being so fucking pathetic, for apparently flouting my own unwritten rules about having no expectations for my kids. However much I thought I had this open heart and mindset of allowing them to be exactly who they were, without any limitations or conditions from me, here I was wallowing in the fact that my kid was never going to be any of those things I never expected.  

Now you have to understand, autism is one of many diagnoses B has, and it's pretty impossible to know where one thing starts and another finishes. B's autism is fairly classic, and he sits on the lower functioning (hate that term) end of the spectrum. Currently he has no words. He is a big sensory seeker, meaning if we are not on hand to constantly provide him with safe sensory input, he'll seek it out entirely inappropriately with no regard for his wellbeing. It can be pretty funny. He loves water, so I've often had to scoop him up and move him along when he's dropped to his knees and stuck his face in a puddle. He notices the weirdest things, like the buzzing of the little uplights in supermarket freezers (again, faceplants them, drools all over the fishfingers -my apologies world). He flaps his hands when he's excited, which is cute until he deals you an accidental backhander to the face. He used to stick his hand down his throat to make himself gag, which gave him great sensory feedback but wasn't all that convenient in Tesco with horrified fellow shoppers looking on. B also has huge issues touching certain things. For two years one of his IEP targets has been to tolerate holding a mark making tool. We still haven't ticked that one off the list. For whatever reason, touching things is hard - holding hands is not a favourite, and even just looking at sand or rice in nursery play used to make him physically sick. Because B is a big sensory seeker, anything extreme really floats his boat. He LOVES fairground and theme park rides, the bigger the better, and I think last summer we spent approximately half of our waking hours on the Pirate Ship over at Adventure Wonderland. Thankfully we have an awesome team of carers who love the fact they get paid to take B on crazy rides, so we personally only threw up a handful of times...! 

While we put a sweet little spin on most of his eccentricities, as parents and advocates this shit does get tiring. His lack of regular communication means we have to constantly be tuned in to Radio B. If we're slightly off and things get fuzzy, all hell called and they're waiting just around the corner. I've contemplated wearing a low cut top with 'SORRY" plastered across it for the times we go out somewhere public and I'm constantly apologising for B's complete lack of social functioning. He loves running into people, especially larger, softer people, presumably for the wibbly wobbly sensory feedback it gives him. He also obsesses over babies and isn't always that respectful of their personal space, often trying to climb into their prams. I figured if I wore the aforementioned 'sorry' top people might be distracted enough by my boobs (they're pretty good boobs) while reading the apology to avoid a nasty sweary confrontation. It's usually me being sweary. Under my breath. Whilst trying not to cry. Thankfully B attends an amazing school with speech and language therapy on site, a great medical team and teaching staff who are second to none. So that's one less battle we need to fight. Respite and family support is a whole other thing, and way too much to get into at the end of a blog. But all these things pale into insignificance when he finally learns how to step into his trousers, or brings us a PECS card to ask for something, or, like this morning, hands me the bread and then tries to put it in the toaster to show me he wants toast. That stuff is freakin' awesome. 

So what am I trying to get across? I don't know really. I guess, for my little bit of awareness raising, I'll finish with a plea. Please don't judge- autism is so far off everyone's radar that meltdowns can look like brattish behaviour, and weird little oddities do appear awkward. I get that. But hold off the judging and love our quirky kids. Include us. Teach your kids manners but educate them that a person's worth is not defined by how well they can function in a social setting. Bear your discomfort just long enough to let our amazing kids teach you something back. Gold panning takes time and patience, and I'm still there, out of my depth in cold water and painfully sifting through rocks. But those little flakes of gold are so worth it. 

There's a whole bunch of words that begin with an A,
Annoying alarm, actor, aunt and ashtray.
For me all those a-words have nothing on one,
It starts with an A and ends with my son.

Saturday, 5 March 2016


The best types of mum come in all shapes and sizes,
With one thing in common which shouldn’t surprise us
Mums love from their heads to the tips of their toes,
Despite the chaos and challenge that life sometimes throws.

‘Come on, hurry up, we’re going to be late.’
‘Have you done your homework?’ ‘Please clear up your plate!’
‘Why is the fish swimming round in the loo?’
‘And no, not right now, you can’t go for a poo.’

‘Stop fighting, but if you insist then bog off.’
‘You’re not dying, get dressed, it’s only a cough.’
‘Will you please put your clothes to be washed in the pile,
Your room smells like hellrot, it truly is vile.’

‘I love you a lot but right now it’s quite hard,
To like you so much when the window’s in shards.’
‘That willy joke’s funny, but 12 times today?!’
“Yes, I can see you had fun at school with messy play.’

‘This cake is delicious, you’re such a great cook!’
‘No, the iPad doesn’t count, you have to read a real book!’
‘You’ve thrown up? Oh dear, where exactly my love?
The car seat, the carpet, and inside your glove..?!’

This crazy-mad chaos can threaten to drown,
Until we peek in their room once it’s all quietened down
Their little cute faces all smooshed and asleep
Quiet and warm, and dreaming so deep.

We’re all super mummies, but then there are some,
Who need to shout loud to get mummy things done
Their babies are special, needing extra support
Loving comes easy, but resources are short.

And so, special mummies, this shout out’s for you.
I see all the million things extra you do.
I know you are tired, I know you are done
And I know that you’ll carry right on; you’re a mum.

I know you’re surprised by the things you achieve,
With zero sleep, coffee and a tear-sodden sleeve.
Some days it’s too hard, and you want to give up,
But there’s no other option, so onwards and up.

You’re still changing nappies a few years too late,
And the bleak isolation is something you hate
Your friends’ kids are all playing games at the park
While yours doesn’t get it; the difference is stark.

The thousands of meetings you have to sit through,
Just to make sure your baby can get on in school
Making sure the professionals are doing their jobs,
This huge toll often causing frustration-filled sobs.

Special mummies, I love you, your children do too.
And the higher the mountain the better the view.
I know it’s a rough path, the lesser trod way
Swapping lives just seems such a good option some days.

Keep on keeping on, you’re so brave and so kind
The heartbreak you feel when your child’s left behind
Is painful and sharp, it cuts right to the core,
Leaving wounds that are sensitive, open and raw.

Even if they can’t tell you themselves then know this,
The language of love isn’t something they miss.
Your patience in every small thing that you do,
Your hugs and your kisses, scream out ‘I LOVE YOU.’

And they love you right back, you’re truly their hero.
If the number of words they can speak is at zero-
Doesn’t matter at all, love is way more than talk
You grew them, and fed them, and helped them to walk.

The smile in their eyes when you sing them a song,
They trust you to carry them when the journey is long.
The brief little giggles when something is funny,
So much love comes your way.. why? Because you’re their mummy.  

And so beautiful mummies, this shout out’s for you.
I see all the million things extra you do.
I know you are tired, I know you are done
And I know that you’ll carry right on- you’re their mum.

Thursday, 28 January 2016

Myths and Legends

January is a tough month for most people. The financial wasteland that seems to stretch on forever before the long awaited January payday, the Monday-morning feeling which lasts for a whole friggin’ month, and the shitty weather - in the UK predictably alternating between crap-it’s-so-cold-I-just-accidentally-keyed-someone’s-car-with-my-nipples and oh-shit-it-looks-like-I’ll-have-to-swim-to-work-again. Not forgetting of course the in your face promotion of all things ‘healthy’ directly after a month of shameless media-driven hedonism involving alcohol, cheese, and a substantial increase in waistline. January is difficult again for me. It’s the month I lost my mum. Three years ago now she got unexpectedly sick with pneumonia, partly due to her poor general health but partly due to the one inadequate gas fire heating in her home, which she didn’t put on out of fear of not being able to pay the bill. All round, January is not my favourite or my best when it comes to happy months. If you happen to have a January birthday, my commiserations- everyone will likely forget or, if they do remember,  people will be too busy on their health kicks to come and help you celebrate. Oh, and you’ll probably get rubbish leftover Christmas pressies that no one wanted. Yep, my sincere condolences to you my short-changed friends.

This particular January, aside from all the regular stuff, has brought added challenges (just for shits and giggles eh, Universe). Back in the autumn, B’s one setting provision for overnight respite was shut down by OFSTED for failing in spectacular fashion on just about every criteria. While we obviously would never place our child in unsafe care, Wessex Lodge is realistically the only viable long-term option for B, and so shutting it down leaves us with no overnight respite. The old adage ‘you don’t know what you’ve got til it’s gone’ is pretty spot-on in this scenario. We had reached a level of decent functioning in terms of quality of life with B in respite two weekends a month. It was good for him, it was good for us, and it was good for our other three kiddos. There was enough downtime to make the rest of our chaos manageable, and we even got to do things for ourselves once in a while. And since the autumn, it’s been harder. January feels like a bit of a breaking point, if I’m entirely honest. Here’s why.

I’ve been thinking about this a lot lately, and I want to take a bit of time to shatter some of the elusive myths surrounding life with disability. There are a few common misconceptions about the way we live, and more often than not, about the inner workings of the disability community. And because I’m nice (!), and tolerant (!!), and I love you all (that’s genuine!), I actually want to make sure you get it. Please don’t be offended, but when you don’t, it impacts everyone. Moreover it especially impacts us, as families with disabled kids, in ways you probably wouldn’t even consider.

MYTH 1: I am exponentially capable, and exponentially resilient. Horseshit. Big fat piles of horseshit. Just last night I sat and cried overwhelmed tears, feeling so out of my depth, and floundering around feeling as though I don’t know any of the right things to say, and any of the right things to do. I am responsible for something I never asked for, but that something carries so much weight it’s difficult not to feel crushed. And the more you crack on, the less people think to shoulder a bit of that weight. It’s the same with uni. I’ve always gotten decent grades, ever since I was a kid. My family came to expect it of me, as though it was just part of who I was. I managed to get all A*s and As at GCSE, and three very decent A-levels in biology, chemistry and physics, all while working a paid job most days and caring for my mum who, at the time, was hugely struggling with her mental health. My family were fairly dismissive of my achievements - they expected nothing less, they said. But when other relatives got far lower grades than me it was a much bigger deal. Because apparently they ‘weren’t wired up like me’ and so it was seen as a higher achievement. Exponentially capable. Exponentially resilient. I want to tell you right now I am not. I am broken, and messy, and with life the way it is I often want to shout and throw things (and sometimes punch people, but don’t worry, I hide it well). The one person that would always without fail tell me she was proud of me and mean it isn’t here to tell me anymore. This degree is super tough. Like, really tough. I’ve almost jacked it in on a couple of occasions, and then I’ve done what I always do. Given myself a shake, got my shit together, calmly worked through the emotional chaos and by sheer grit and bloody stubborn determination, got on with it. And yet, people assume it’s easy and I take it in my stride. So not true my friends, so not true.  

MYTH 2: As a society we’ve evolved, and disability no longer has any of the stigma it used to have. We are all completely tolerant and the world is a happy melting pot of inclusion.
I so wish this was true, but the orange He-Who-Shall-Not-Be-Named over in the States is proving previously hidden prejudices are actually just a campaign away from being fully out there and apparently entirely socially acceptable. As part of the disability community, it really makes you wonder what’s really behind people’s polite try-not-to stares and the kind of things they might say in your absence. On a purely practical level of inclusion and access, there would be uproar if say, baby changing facilities weren’t prevalent in public places. It would be unfair to expect mums to be curtailed to their homes when everyone knows an active social life is key in the wellbeing of all concerned. And yet, in Poole, there is one disabled change facility. One. It also happens to be in the arse end of nowhere at the very top of the Dolphin Shopping Centre, making it tricky to access and fairly out of the way if you happen to be out anywhere else in Poole. Good one genius planners. On another note entirely we often find people’s tolerance levels for B’s (strange) behaviour are much higher if he’s wearing his helmet or in his wheelchair. Are we really that ignorant that it’s necessary for someone to have a physical marker of their disability before we cut them any social slack? Surely we should be aiming for a default of non-judgment on everyone we meet, regardless of outward appearances?

MYTH 3: The system is there to help, and we should be falling over ourselves in gratitude for any support bestowed upon us by the magical fairy godmothers over at social care. Oh. Dear. Lord. Where to start with this. OK, so the system is inherently flawed right now, mainly because of two things- funding and legislation. The simple bottom line is that funding is hugely lacking, and legislation is so over-complicated that even the services meant to be enforcing it have no idea of their legal statutory responsibilities. For example, I had a recent email through stating that the CHAD (child health and disabilty team) are only prepared to fund me £6.50 per hour for B’s careworkers. I have yet to point out that not only is that illegal (the current national minimum wage is £6.70ph) but no one I employ should or would work for that money, when it involves caring for a non-verbal, severely epileptic, autistic and behaviourally challenging (albeit gorgeous) little boy. I’m planning on asking them to send me an invoice proving that were they to buy in that same care, it would indeed cost them the meagre £6.50 they are prepared to give me. At every review and meeting we have I am constantly told we receive a comparatively large package of care which, if you’re interested, is eight hours per week and one overnight 24hr stay per month. I take issue with this since our care package is meant to be person-centred and focused on meeting the needs of B and our wider family. It shouldn’t involve any sort of comparison with what the next family receives, and I resent being emotionally manipulated and made to feel like I should be magnanimously grateful for every minute I am stealing away from some other poor disadvantaged soul. Not enough money in the pot? Go back and shout at Central Government, but don’t put additional emotional strain on families who are already just about cracking.

MYTH 4: I know what I’m doing. See response to myth 1. I have no fuckin’ clue what I am doing 99% of the time. Seriously. The epilepsy? Guesswork. The autism? I never know whether I’m accommodating his needs or enabling socially inappropriate and challenging behaviours. The meds and their side effects? Who knows. I could read the entire British Medical Journal and still not know whether I was doing the right thing. The list of questions is endless, and when you have a child with so many complicated and interacting conditions, trying to track down objective, effective courses of action is like trying to fill up a colander with water- nigh on impossible.  

MYTH 5: As parents of disabled children, we really shouldn’t expect special treatment. Why should we get to see the doctor as soon as we walk into the surgery? Why should we get served promptly in cafes? Why should we get priority parking? In an ideal world, I agree, it’s not fair for us to get special treatment. In an ideal world my eight year old child would be able to walk across the car park with me without the possibility of certain death. In an ideal world my non-verbal child would speak instead of making the only noises he knows how, which unfortunately can be slightly on the ear-piercing side sometimes. In an ideal world we could go to the doctor’s without it being a traumatic tear-inducing experience for all concerned. That shit isn’t so fair either. So trust me when I say, the special treatment (if we ever do get it) is highly beneficial for everyone in any given situation.

MYTH 6: We do this willingly. I know this may come as a shock to you, but honestly, I spend most of my days simultaneously sitting on It’s-Not-Fair while forcibly dragging Willingness out from her stubborn hiding place. It’s-Not-Fair is far louder and ten times more precocious, so I’m working hard on boosting Willingness’ stage presence in my life. I hate that on the rare occasion we gather with friends, I have literally nothing to offer the conversation. Their lives are tangled up in the mundane excitements of picking out a new kitchen, their latest skiing trip, or where they plan on holidaying this summer. Us? Currently fighting tooth and nail for provision that should be standard, so I can carry on in uni and S can carry on working. Managing a team of carers. Attending a billion different appointments. Managing the inevitable fallout of B’s impact on D, O and BH. All part of a typical month for us, but surprisingly, that doesn’t go down so well in polite dinner conversation. So yeah, I said it, I resent the fact that I can’t chip in with my preferred shade of Farrow and Ball, or moan about how useless the contractors were or how Christmas this year was absolutely superb darling. As much as I don’t want to be ‘that’ miserable dinner guest who envies everyone else, I fully realise I am sometimes that very person.

I hope you’re now thoroughly enlightened on some of those tricky myths that seem to persist around living with disability. And I’m sorry to sound negative. I really truly am trying to pursue relentless optimism. But pursuit involves energy, and energy is something both fleeting and sparing in a situation like ours. I am learning (slowly!) to enjoy the very littlest things in life to the max- the whiff of garlic when walking down the chines, the spine-tingling sound of the sea, the hysteria that erupts when we discuss D visiting family over in the States and accidentally ending up in Mexico, and best of all, my little boy enjoying his ball.

Life is good. But it’s also really hard. Please do be there and love us anyway -  mess, chaos, struggles and all.

Monday, 21 December 2015

Christmas News (cos we were crap at cards this year!)

As much as I’d like to think of myself as an all singing, all dancing, all crafting Pinteresting super mum, I’m honestly not. The reality is I high five my reflection when I make it through the day with all four children plus my sanity intact. Parenting is some seriously tough shit. As those of you with small people will know, Christmas time amplifies the toughness tenfold- overtired tears, tantrums over nativity costumes, three thousand Christmas discos….and that’s only the parents. The military precision needed to execute the last two weeks of term borders on some mad real-life version of Risk.

Day one: child one - school uniform, party clothes in bag, no snack. Child two - non-school uniform, party snack for sharing. Child three - School uniform, disco clothes in bag, pick up an hour later than usual. Child four - money for ice cream at the panto, school jumpers but any trousers (seriously, what sort of crap is the half school uniform thing?!)
Day two- you get the picture. Dropping a ball puts you at serious risk of meltdown, refusal to leave the house, and bookbag slips of doom reminding you how much of a crap parent you are since you forgot (again) to send in the oh-so-necessary black T-shirt for child three’s nativity.

Anyway, the point is, I epically failed at Christmas cards this year. Unapologetically. Like I said, there was just too much going on. Luckily (most of!) my kids are quick learners and sort their stuff out themselves, and this year I had the privilege of watching my littlest totally nail the main part in her half-hour long school production. The first time in a decade where I have willingly (rather than begrudgingly) spent an hour of my life wedged onto too-small benches watching the back of my child’s head through the fifteen smartphones in the next row. O also had a solo in a pretty packed out church carol service, which she managed with effortless grace and ease and not a shred of nerves. Yep, this year I was pretty proud of the Parr contribution to the Christmas festivities. Next step, surviving the full two week holiday….

So, not being the smug Pinteresting type (I do LOVE Pinterest by the way, I just never get time to execute the lovely crafty pinning in real life) I thought I’d news-blog for you. Like one of those delightfully cheesy Christmas newsletters some families send in their lovingly handcrafted cards. Except not a card. So you can keep up with our news, if you so desire.

The kids are all alive, that’s a win. I say that flippantly, but there is hidden meaning in that. At the start of this year B was having so many seizures daily that I put him to bed every night desperately hoping, but never really knowing, if he’d make it to the next day. Sadly, three of his dup15 buddies around the world have passed away this year. We live with the background knowledge that his condition could take him at any time, so it really is a win that all four have made it through the year! February saw B tech’d up - he had an op to put a PEG tube in his tummy so we were able to administer meds safely and effectively. Since being on the top dose of a few different meds his visible seizures have decreased, but his EEG (brain trace) tells us he is still experiencing similar dire levels of seizure activity, which kinda sucks. He continues to keep us on our toes, needing constant 1:1 care to keep him safe, and has a whole host of B’s angels to help with this. I wish they could know how absolutely vital they are and how hugely they are appreciated. So Wendy, Lois, Elizabeth, Gemma and Ashley, you rock our world. B loves his adventuring crew and has continued to impress us with his growing communication skills. He takes after Mum in his impatience, and can get frustrated when we’re not completely getting it, but has started to use his communication app on the iPad more and more. I never knew the child liked cheese so much until that app- he is particularly fond of searching through for the cheese picture and asking over and over for that tasty dairy goodness! Watching him perform in his school show was both incredible and brutal in equal measure. He was a superstar, and bounced on a trampette before balancing along a beam as one of the lost boys in a Peter Pan scene. Despite the ever present and guilt ridden grief that comes with an unexpectedly complicated child, I loved it and managed not to cry the whole way through! He really is an amazing boy.

BH. Well. Hmmm. How can I sum her up positively AND honestly?! Strong. Bold. Adrenaline-seeking. Fearless. She is an awesome but pretty challenging small person with big ideas. But apparently she is definitely not a little shit at school. We explicitly clarified that with my parent-of-the-year comment at parents evening earlier this term. In short, she’s a firecracker of a kid who more than knows how to make herself heard in every situation. As parents, we drew the short straw in terms of effort in vs visible results out, but she’ll be a worldchanger for sure. Hopefully in a good way! She started at the same theatre school as Ocean this year and totally LOVES it. She did her first exam recently, entirely unfazed by the whole affair, and continues to love being the star of the show.  

DP. Legend. Total legend. Gets stuck in with every sports club going at school, takes life in her stride and is thoughtful and helpful to boot. Teachers rave about her, she’s hitting way above her level academically, and is all round awesome. She’s currently really enjoying year 8 and we are loving watching her grow into her whole own independent woman. Not perfect, you understand, but who is? We still get teen angst and attitude but she definitely so far has her priorities right. She wrote an awesome slam poem this year about disability, while lots of her classmates chose themes like McDonalds. I guess there are some ups to tricky life experience! Long may it continue…

O is my sensitive soul. Christmas is a hard time of year since my mum passed on just after christmas almost three years ago. Her and O were birthday buddies (great planning on my part) and shared a special bond and a special love of all things Christmas. My mum was THE best person at thoughtful presents, and so we all feel her loss a little more around the festive season, especially O. O has been busy stage school training and getting stuck in to her part in the ensemble of Bugsy Malone (in February, at the Pavilion, please come!) since auditioning back in November. She is a talented performer, and, like BH, shows nothing but confidence in her singing, dancing and acting abilities. She’s in the last year of primary, and has loved it so far, getting lots of great opportunities to sing and dance in various shows and choirs. Taking her to our (incredible) local church carol concert was magical- she watched the choir with eyes aglow while asking me when exactly she could audition to be a part of it. She has a great sense of humour and we often invent impromptu nonsense songs around the piano, much to her and BH’s delight and resultant hysterical giggles. Lovely girl.

And us? Well, we survived. By the skin of our teeth. S had a bike accident a few months ago and went through the back window of a car, slicing himself up pretty impressively. Not one to cause a scene, he calmly phoned telling me they were taking him in an ambulance and he had 11% battery left, followed by a police visit to the house to drop off his mangled blood-covered bike. Thank you NHS for sewing him up nicely. He’s enjoyed getting fitter this year and has been running, swimming and biking in the spare bits of time he gets. I have gotten back on my bike after a different accident a couple of months after S. Seems bikes are lethal apparently. Not to be outdone by S, I came off, dislocating my knee joint, rupturing my ACL and fracturing some bone I can’t remember the name of. They also picked up I had old woman style osteoarthritis in both knees. Currently I am having regular physio and need quite a big reconstruction op, but planning that in is going to be tricky with the B issue. Being out of uni for a month when I was in cast (full on leg job, proper sexy) frustrated the hell out of me, and has meant this semester has been particularly challenging work-wise. What with not getting in for the teaching and all. I’ll be honest, at some points I have wanted to jack it in. The planning around me commuting to Winchester, Stu working, the kids being where they need to be and B’s epic ongoing admin just to do life is a lot. Throw in any added pressure and you have instant family implosion. Which is what we’ve felt a lot this year. Wading through mud, watching everyone else sail by in their speedboats.

I have realised that I have a choice though. Without consciously choosing to see the good bits in life, I could easily become a hardnosed, nasty-ass bitchy nightmare. I sometimes am. This year, my resolution is to grab hold of the teeniest tiniest best bits and pursue relentless optimism. That’s no mean feat, and doesn’t mean I’ll suddenly become some insane and unreal cheesy grinner unable to feel the shit bits. The shit bits are real. They hurt. This year was hard. Every year is probably going to be hard. BUT. I have some amazing friends. I’ll offend someone by missing their name off if I start naming names, but you know who you are. I have a family which hasn’t gone under yet, who, despite my worst fears and guilt of no one getting enough,  are thriving and turning into some quite impressive, compassionate, loving, mature people. This year, I’ve been to gigs, slept in a field at a festival, visited worldwide family, met some brilliant new friends, got drunk with some awesome old friends, got through HALF a degree (!), cried over beautiful friends taken too soon, laughed with my kids, watched Bond with S, and lived. This year I’ve lived. Next year, I want to do the same, but better. Loving deeply, hurting wholeheartedly, laughing brightly and living richly. I believe this life is all we have, and I intend to grab it with both hands in 2016.

Live richly, to the depths of human experience and the heights of human imagination. And always, be kind and be brave. Kindness and bravery can change the world.

Merry Christmas and a Happy New Year. I love you all.

Sunday, 18 October 2015

Sorry not sorry

When you have a significantly disabled child who isn't a wheelchair user, and who looks 'normal,' you step into a whole new realm of ignorance and intolerance. Basically, people can be judgmental arseholes. But we all knew that already right? Weight, parenting techniques, drinking habits, diet, haircuts, music taste, political preference.. you name it, people have probably judged it. The thing is, when it's aimed at a kid who is usually pretty vulnerable, and often can't speak out for themselves in the same way as an adult, it crosses a line.

I've heard countless friends from the disability community recount times where they were judged for the behaviour of their children, often loudly, in public and without boundary. These are some of those genuine gems:

'Did you know before he was born he was going to be like that? Why did you carry on with the pregnancy? It would have been fairer on everyone if he wasn't born, don't you think?'

*mid-meltdown, usually in public* '(tutting) Can't you control your child? Too many spoilt brats around these days!'

'Why is your child so retarded? I don't want his behaviour to influence my kids..'

'You have no control over your child, what poor parenting.'

'All they need is a good smack.'

*in reference to hat and sunglasses worn because of albinism* 'She won't be able to see a thing with all those accessories on...'


'You should keep him in a cage if he's going to behave like an animal.'

*prolonged staring and/or pointing*

I shit you not, these are all real things real human beings have said to other real human beings. Apparently considering yourself better than someone else is justification to speak poison. Whether the disability is obvious or hidden is pretty irrelevant- these are people, and the basic social rule of 'don't be a dick' very much applies.

In the moment of such an encounter there is such a level of shock that response is apologetic and accommodating, if it comes at all. Then a few minutes later comes the seething white hot rage; how could anyone be so ignorant? So callous? So fucking rude? You end up kicking yourself for not cracking out a witty put-down combining both education for the idiot concerned and smug self satisfaction at your own cutting satire.

So I thought I'd prepare a list. That way, you'll always be equipped with a witty comeback if the judging-Nazi come your way.

'You know what, I've been looking for an all-in-one therapist. Since you've proved so clearly to know my child better than me today, I'd love for you to send a CV my way and I'll be in touch to get you on the payroll ASAP.'

'My child has bonafide reasons for acting the way he does. What's your reason for acting like a fuckwit?'

'Didn't your mother ever tell you variety is the spice of life?'

'I'm sorry, do I have spinach in my teeth? Your staring is making me self-conscious.'

'If all my disabled child needs is a good smack, what exactly is the remedy for self-righteous arsehole-ism?'

'You're behaving like an anti-social intolerant Daily Mail reader; does that mean you should be kept in custody?'

'My child is not a product of poor parenting. Unfortunately you seem to be.'

'For the record, disability is not contagious. I'd far rather expose my child to a dose of reality than a dose of shitty attitude, which I've heard is pretty contagious.'

'Yep. Yep. I really should have thought about eugenics when opting to continue my pregnancy and have my beautiful child. My bad.'

'If you think you can do a better job of controlling my child, step right up and have a go.'

Or ultimately, if you can't beat them, join them. Not very classy, but 'Fuck you' is hella satisfying.

To those of you without special kids who may find this offensive, sorry not sorry. To the rest of you-happy retorting people! :D