Friday, 12 August 2016
Today I am suffering with acute bureaucracy fatigue. It's a condition characterised by eternal phonecalls to people who hold imperative keys for life support, reading up on legal rights and the SEN code of practice, trying to hold your shit together while facing the millionth diversion in the road of accessing aforementioned life support, and walking the fine line between megabitch and softly softly catchy monkey.
I think i'm fairly on point when I say that most parents find the summer holidays somewhat crazy. For working parents, there's the matrix of childcare to sort. For those at home, there's the frightening prospect of keeping all your children (and yourself) alive AND entertained for six weeks. SIX WEEKS. For us, this six weeks resembles something of a desert road, stretching on into a horizon we can't quite see. It takes us a ridiculous amount of hours to arrange appropriate support for our family to survive the heat of summer. It kills me to need outside support to function, but B requires constant 1:1 line-of-sight supervision for safety reasons, and last time I checked, they hadn't cloned another one of me to look after the girls. Cue the Schedule of Destiny. Weeks in the making, this is not something to be sniffed at. In fact, I think most parents of special needs children probably have better research and organisation skills than MI5. Now there's a career plan. Anyway, back to the S of D. On Tuesday, B attended a holiday club, based at his school but run by some new care providers in town. The company running last year's club folded, for mysterious reasons unknown. This happens a lot with care providers. It sucks. And unfortunately, beggar boroughs looking for contractors of provision for disabled children are not often afforded the opportunity to be choosers. And because of the distinct lack of competition, the losers end up being our kids. The very people whose needs are supposed to be being met.
Back to Tuesday. On picking B up, I was offered no immediate conversation with regard to his day. When I inquired, his 1:1 told me 'he's been absolutely fine.' That was it. B had at this point reached his limit and needed to leave, so I ran out of fishing time. I was given no indication of seizure activity. I didn't know how much he'd eaten and whether they'd needed to tube feed. I had no clue about the activities he had taken part in, what he'd particularly enjoyed or disliked. And then, on arrival at the car, I discovered he was wet and dirty. The kind of dirty which was fairly bedded in and had obviously been knocking about a while. Bearing in mind the massive prep work that had gone into these guys being offered the privilege of taking care of my child, this was not OK. I'd sat in meetings with management. I'd answered a million questions and filled in a million forms. I'd emailed seizure care plans, feeding plans, behavioural plans, medical emergency plans, and general information on my beautifully complicated boy. A vague one sentence feedback for a child who is entirely non-verbal, has a plethora of complex medical and learning needs and had spent a whole six hours in their care was NOT FUCKING OK.
The ranty, sweary, life's-not-fair parent came to the fore at that moment, and later I sat with B, apologising for the shitty world he happened to be born into. As though it was my fault. But as his parent, it really does feel that way sometimes. I promised him I was trying my best. That I was fighting his corner. I really, really hope he knows that. And at that point I had two choices.
Option 1: Suck it up and accept less-than-preferable care provision. Assume B doesn't really get it and be grateful that someone else has him for a few hours. Fly under the radar. Accept it's never going to be different. Me versus the system. I mean, he's still alive at the end of it, right? And even if he has had a shitty time, he can't tell me, so I can realistically crack on in blissful ignorance. Right?
Option 2: Step up. Again. Be the voice B doesn't have. Speak out. Call them on their crap. Firmly set the boundaries of the expectations I have when I hand the care of my child over to someone else. Repeat the same things I've said a thousand times. Suck up that B might not have any provision if I do that. Fight, even in apparent futility. Fight even when I know the provision is massively outweighed by need and so there's no real accountability for the care providers to get their shit together.
There will always be kids whose parents choose option 1. Honestly, I understand that. This chaos demands every ounce of energy every minute of the day. The admin, the emotional rollercoaster, the physical meeting of care needs- it's all costly. And for some parents, there's nothing left to give at the end of that.
But I'm a feisty bitch. My personality is naturally a little confrontational I guess. I can't settle knowing I haven't tried my absolute best at something. I find it hard to sit still, or relax, in case I happen to be wasting a moment of my life in which something awesome could have otherwise been accomplished. I know it's not an altogether healthy place to be, and I'm working on it, but in this scenario it's pretty good.
So I took a deep breath and emailed. It was fair, calm and constructive. I've learnt along the way that an insulting email minus any actual outcome targets is entirely useless, serving only to get everyone's backs up while earning you the label 'nightmare-bitch-parent-avoid-at-all-costs.' Not so helpful. Their response was less constructive, centering around the feelings of workers rather than addressing the very real concerns I'd raised and being B-focused. Next step. Option 1 or option 2. Always the choice. Every time shit hits the fan, or it gets harder, or I hit another barrier, I remind myself again why I am chasing option 2.
In a wider context, taking the harder option and often shooting myself in the foot in the process feels right. If we start settling for less-than-best in the context of those who can't fight back for themselves, we surely start down a very slippery slope leading to all sorts of abuses of the most vulnerable among us. We also begin to dehumanise people. When the effort I put in to someone is dependent on what I can get back, their worth is reduced to some kind of fucked up economical exchange. B operates on a different level. Sure, he might not be able to communicate well. He is affected by complicated epilepsy which means he needs constant line-of-sight supervision. The people looking after him need to be shit hot on a million subtle complexities regarding his care. He is, as I mentioned before, costly. Emotionally, financially, time-wise and resourcefully my baby boy is expensive. It would be easy to settle for the least draining option. Palm him off to whoever will have him. Shrink back and decide any option is better than no option care-wise, and that I'm never going to be able to change the monstrosity that is the system anyway. But I refuse to dehumanise B to that. He is a person. Yes, he has difficulties and yes, he poses a challenge to a world so manically driven by productivity and accomplishment. But here's the thing. We as regular people so often exacerbate that same mentality. In the subtle society-approved dinner party questions we throw out on meeting up with friends. In the self-evaluation of our lives. And in the hopes and dreams we so often don't even realise we have for our kids until they're totally blown out of the water. We idolise the high flyers and forget about those on their literal knees, wiping shitty arses and caring for the unfortunate pitiful inconveniences among us.
'What do you do for a living?'
'Have I reached my goals? Am I settled financially? Am I in a good job? Have I managed to get on the property ladder? Do I have a decent standard of living?'
'I really hope she gets into a good university.'
'He needs to find a nice woman and settle down.'
Honestly, on a societal level, I don't even know where to start with valuing people for people. It's so inherent in our psyche that all the other peripheral shit is tangled up with our perception of worth. How do you start unravelling that? For me, I'm pulling the small thread that is B. Making sure that the care he receives matches his inherent worth as a human. Individually, not as part of a mass of 'people with disabilities.' And I'm going to make much more of an effort to hear people's stories. Care about the road they've travelled. Listen to their hopes and dreams and make those human on human connections. The connections where circumstance fades away in the strength of shared humanity. Imagine the richness of experience we could share in a world free from social class lines, and easy neat boxes we use to categorise and group. I choose to keep pulling that thread, even though the mass of knotty chaos seems overwhelming, and even when it feels like I'm the only one pulling.
To end this slightly off tangent heavy post on a more accessible note, here's a couple of extracts from my favourite author ever. A super wise guy with incredible talent for rhyming, I give you Dr Seuss.
Horton Hears a Who is one of the most insightful books on people I think I've ever read. An elephant finds a speck of dust on a clover, and on that speck is a whole planet of small people. His friends think he's crazy and want to boil the clover to end the ridiculousness, but Horton stays faithful to protecting the little speck planet. And this is why. A person's a person no matter how small.
'From sun in the summer to rain when it's fall-ish,
I'm going to protect them no matter how smallish,
For even though you can't see or hear them all,
A person's a person, no matter how small.'
Oh the Places You'll Go chokes me up every time I read it. My littlest is a huge Dr Seuss fan, and every night we read an epic rhyming tale together. Whenever I read this one, she always asks why my voice is wobbly and I have watery eyes. Dr Seuss talks about life, about how it doesn't always go to plan, and about how we can choose our responses in that. Kids book? Yes. Philosophical gem? Absolutely.
'And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.
But on you will go though the weather be foul.
On you will go though your enemies prowl.
On you will go though the Hakken-Kraks howl.
Onward up many a frightening creek,
though your arms may get sore and your sneakers may leak.
On and on you will hike, and I know you'll hike far
and face up to your problems whatever they are.'
So, Dr Seuss, thanks for the life wisdom. Here's my little response.
Yes, I am tired, and the weather be foul,
And I'm constantly hearing the social-care howl.
But I choose to get up and stand tall and crack on.
Though the road that I'm walking seems way way too long
If I look really hard on this dark lonely street,
I'll always find someone amazing to meet
Their arms may be sore and their sneakers all wet,
But their stories are some of the best I've heard yet.
Monday, 13 June 2016
Sometimes, there are too many things that hurt. Too much to contend with that’s tough. It seems to me that if you care even remotely about making the world a better place, the longer life goes on, the bigger the task and the smaller you shrink.
I’m overwhelmed right now on a few levels. Personally, I’m tired. So. Damn. Exhausted. Lifewise nothing is mammothly different at the moment. There’s the constant kids. The constant B-admin. The constant two-steps ahead to ensure life happens for everyone, even if it is to a less-than-optimal degree. But relatively speaking, we’re in a slightly smoother patch. B’s seizures have lessened and as a result he’s been storming school. The girls are getting more independent and it feels a little easier to breathe. Although, disclaimer, I am still that mum who forgets every fucking form and sneaks into events frazzled and late. The ones I remember at all, that is. So it got me thinking; why, even in a good patch, are things so tricky?
This weekend simultaneously slapped me in the face and bit me in the arse with an answer. From fairly calm waters, a sudden storm. B, for reasons mostly unknown, was not a happy boy. We had meltdowns. Kicking, pinching, biting, scratching meltdowns, complete with the launching of anything that happened to be within his reach. He was flitty, unfocused and obviously bothered by something. But even the most educated and knowledgeable guessing did sweet FA to remedy the mystery problem. We had to keep the kids apart to make sure the girls didn’t get hurt. The stress of the whole situation seeped out like some obnoxious gas, turning the others into grumpy arses, which then, in turn, hiked up the stress levels a few notches more. Vicious circle springs to mind.
The trickiness isn’t in the day to day grind, although that’s relentless and exhausting enough. It’s in the soul-crushing unpredictability. One day I’m winning, the next I do everything exactly the same and I’m on my knees. I succeeded. I failed. I succeeded. I failed. I hate rollercoasters at the best of times, and right now is a vomit-all-over-the-person-in-front moment. Yesterday I realised I’d been standing in the same aisle in Asda for ten minutes. Ten whole minutes. I’m not sure where those ten minutes of my life went, or indeed what people must have thought about the decision making capabilities involved in buying tampons. I’d spent the day up to that point with B and BH, which is enough to scare any responsible grown up, but after maximum chaos in soft play (hawk-eyeing B to save any poor T-shirt clad small people from getting pinched, and then an epic WTF in the tube feeding department-B scratching and flailing and feed flying everywhere) today was particularly harsh. I think I brain-blanked, and when I did come to I just wanted to cry. Right there in the sanitary aisle, which would obviously have done wonders for all those patriarchal hormonal-PMT-crazy lady stereotypes. Sorry feminism. As it was, I didn’t cry- floodgates and all that. But I would have happily wandered off into another life in that particular moment. Not because I don’t love my kids. Not because I’m a horrible human. But because life. And the absolute chaos that rules day in, day out.
Then the Brexit stuff. I mean, I’m sure many of you know my views on this. I’m pretty vocal. But that stuff directly adds to the daily chaos in a very real way. Other than the uncomfortably obvious are-we-really-going-to-stamp-our-feet-and-fuck-off-because-we-don’t-get-our-way-and-are-seemingly-as-a-nation-a-little-bit-racist, the connotations are way more real life for me, and for other families like mine. The looming threat of Brexit fills me with actual, tangible dread for the future of all my kids, but especially for B. Shedloads of funding for services that would be considered basic for disabled children and adults comes from the EU. Without those basic services a whole sub section of our community are denied the right to humanity; to be fully and absolutely integrated as valuable members of that community. I speak selfishly and from my own standpoint, but I also know there is uncertainty over our economy, over our NHS and over our government if Brexit goes ahead. If the worst case scenario becomes reality, everything goes tits up, and in a few years we are expected to meet all B’s needs, financially and otherwise, alone and without outside help, I literally don’t know how I’ll do it. (Although maybe the boobs could come in handy-see previous post!) He’s costly, in every sense of the word. But he’s also a person and his worth, along with others like him, cannot, and must never be, reduced down to efficiency. The main arguments for Brexit are all economical. B doesn’t feature in that sort of decision. It’s true he’s not productive in an economic calculation. But that kind of thinking dehumanises him. I thought I belonged to a society that was better than arrogant pride. A nation willing to promote unity and diversity rather than make decisions based on fear of different ‘others’. Such scaremongering, arrogance and dehumanisation is not the heartbeat of a healthy Britain.
Living and giving a shit is seemingly pretty rough. It seems like the world is at an all time low, and apparently humans are idiots- who knew?! I’ll be honest, that zealous fire of optimism I used to have back before life happened has kinda dimmed to a barely glowing flicker. But what can I actually do to make the world, or at least my corner of it, a little bit better? I’m not altogether sure but I have some ideas. Grabbing the moments. Spending time making memories and reminding myself of the good stuff out there. Listening to music. Loving. Loving again. Loving some more. Especially when it’s costly and especially when it would be easier not to. Sharing my shit. Helping others with theirs. Believing it can be better. We can still change our communities at a grass roots level. We’re not entirely dependent on the machine, at least not yet. Please, please can we be better than this? Better than the individualistic, self-serving, system-feeding drones we are programmed to be. I need you. And you need me. The reigning noughties high school movie has a lesson for us all- we really are all in this together. (High School Musical, in case you’re interested. Definitely worth a watch.)
No human is an island. And no country is either, regardless of geography.
Friday, 29 April 2016
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
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
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
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 doneAnd I know that you’ll carry right on- you’re their mum.
Thursday, 28 January 2016
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.