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...'

'Spastic.'

'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

Sunday, 11 October 2015

Spider Webs and Sunshine

Yesterday was World Mental Health Awareness Day. I know there seems to be an awareness day for something pretty much every day of the year these days- my favourite being National Dogs in Politics Day, September 23rd if anyone's interested- but mental health is a topic that has influenced the very core of my being.... and so I couldn't let the day pass without adding my voice to the growing song of wellbeing, a song whose music is sometimes uncomfortable, often chaotic, but always achingly raw and honestly real.

My first thought was to write about my Mum; she was plagued with various mental health issues for most of her fleeting existence. St Ann's, the local psychiatric hospital, featured regularly in my every day as a child and even now, as an adult, just thinking about it sends a cold jolt of adrenaline through me. Everything about it was scary as hell; it seemed alive, the looming stone walls hiding the secret of a swallowed section of society.

But a story is always most resonant when it's told firsthand. My second hand experience can't tell you anything about what it was like to be in mum's head. So I'm going to take a really brave step and tell you my personal story of living with mental health problems. I'll be completely honest, it still bothers me that I followed in mum's footsteps to some degree. Growing up I mopped blood, paper-stitched self-inflicted injuries, lied to my sister while hoping to hell Mum would return from her midnight wanders to the local river, counted out pills, bore the brunt of aggressive outbursts, rang CPNs when too many pills were missing, comforted nightmares, quashed hallucinations, watched ambulances rush Mum to hospital in a last ditch attempt to save the life she so desperately wanted to end. I saw all this, and I vowed to myself it would never be me. Each crisis strengthened my resolve to NEVER be that person; to never be vulnerable, to never need help, to never be so selfish.

Even with my vast experience of mental health I had it so wrong- as though thinking positive thoughts and sprinkling magical fairy dust was enough to get through; as though people had complete control over their mental health; as though those who suffered so much could turn their lives around by stepping up, getting over it and making better choices. Until the day it happened to me.

The seeds were probably sown long before the day, but for me, there was a definitive rabbit hole moment. Mum died suddenly and unexpectedly in the winter of 2013, and I spent the next six months on a mission to sort everything out. No one helped me, I'm not sure I would have let them if they'd offered, and I had to learn a whole new facet of adulthood while trying to process my atypical grief for the mum I'd so often been a mum to myself. There was a storm brewing, and I sat in the calm before it, blissfully unaware of what was to come. Mum's birthday was my rabbit hole moment, further confused by the fact it was my daughter's birthday. I remember heading to a friend's gig and in the midst of the music being absolutely crushed for the very first time that Mum had gone. It was as though the last six months hadn't happened- to me the dawning of the ugly truth occurred then and there. Mum was dead.

For a small moment, I felt like I was falling off the planet, and as I came to the video tape started to play. An ugly, distorted video tape of all the memories I never should have had playing over and over in my mind's eye. Every replay twisted me up from the inside; the pain was intolerable, and all that mattered was stopping the tape. I wasn't being deliberately selfish, but I couldn't function at any sort of human level with this internal monologue constantly playing. I became withdrawn, and started doing literally anything I could do to 'get out of my head' for a while. Drinking muted the noise for a while and even if it was short term, it was better than no let up at all. Bridges became temptations of sweet release, fleeting thoughts of jumping bubbling up through the head noise. I went to places I would never normally go and pretended to be someone else entirely. The sea, which for so much of my life had been my solace, threatened to overwhelm me with its dark and menacing depths. My eyes rested on the blades in my kitchen as I fleetingly wondered if mum had been onto something all those years before. I methodically went through Mum's private pharmacy, trying a different mind altering psych med each night.  My sick self made choices my well self would never have made, although, thinking about it, were they ever really choices at all? I'm a natural fighter, and as the head tape shouted loudly, my whole being fought for survival in the form of escape.

I still managed to function on some sort of level, although the simplest tasks became the most epic of missions. Supermarkets were particularly challenging; alongside the constant memory-monologue, the noises and lights felt sharp, almost painful, and ordered thought was nigh on impossible. If people brushed past me the touch sent jolts of panic through my body, on a physical level, and I trembled uncontrollably as adrenaline washed over me. I remember wanting to scream at people, wanting them to know what was going on inside my head, hoping they'd understand I wasn't completely mental. The thing is, I actually was. Despite my judgemental notions of autonomy and the ideal that I, and only I, was in control of how my life panned out, the noise was choking any chance of rational thought and I knew I needed help.

There came a point on the beach, having consumed an almost-full bottle of oral morphine and having narrowly resisted the urge to go swimming fully clothed never to return I had to do the one thing that to me, was synonymous with failure. I had to depend on other people. Those people were literally lifelines at a time where my mental health was at it's lowest ebb, and I will be forever grateful to them. S, E, S, J and L I hope you know I love you.

The doctor I saw diagnosed PTSD (post traumatic stress disorder) and depression, I was started on meds and offered urgent intensive counselling therapy. The mention of therapy was deeply uncomfortable; throughout my childhood I had watched mum go through countless different therapies, both residential and in the community. Swathes of professionals breezed through our house leaving nothing but prescriptions and empty promises in their wake; Mum struggled with her issues until the day she died. I didn't want to repeat the pattern, to go through a whole bunch of medication and therapy if nothing was going to work. And here was the thing, there was no guarantee. The only thing I had was a faint hope, and at a point in my life where I literally had nothing else I had to step up and give it my best shot.

The next few months were hard. Really hard. I spent a huge amount of time processing things I never even knew I needed to sort out. My therapist was amazing, and helped me to realise some key truths.

-Asking for help did not in any way make me weak. (She added that she thought I was probably one of the strongest clients she had come across- maybe she was hoping for a tip?!)

- Being kind to myself did not equate to selfishness. In fact, taking care of my needs was essential to stay healthy for my kiddos, and especially for B.

- I wasn't superwoman. (Truth be told I didn't let on in sessions about my true identity. That shit is classified info. She's right, I'm not Superwoman.... I'm actually Wondergirl! ;)

- I was sick and needed time and medicine to get better.


So simple, and yet so mind-blowingly difficult to get my head around. Like I said, those few months were more than tricky. Slowly and surely though, I started waking up. The video tape eased from a deafening chaos to a bearable white noise hum; shards of sunlight pierced the thick canopy of gloom that had formed over my life; and my smile became my own again, replacing the eerily familiar fakeness displayed to the world as proof I was OK.

Please know this. It's OK not to be OK. The airbrushed society we live in demands nothing less than perfection on every level, but you're never accountable to them. The only person you have to explain yourself to is you. Wherever you are at today, remember there is huge beauty to be found in fragility. You are loved. You are important. Since my wander into the underbelly of societal norms I swore I'd always be genuine. Always be me. Some days I'll be a healthier, or kinder, or braver version of me than others. That's life. That's humanity. The human experience necessitates community. Community comes from compassion and honesty.

So have courage and be kind. Especially to yourself.


Friday, 11 September 2015

End of the Road

Useful things I learned while camping.

1- Kneeling on a tent peg shits all over stepping on a lego brick in terms of ouch value.

2- Putting your tent up in the garden pre-festival is ALWAYS a good idea, unless you want to provide the tent neighbours with two straight hours of comedy gold.

3- The poles on the back of portaloos are ingeniously engineered for those desperate moments where hovering is the only option. Trust me and try it next time- that little gem is a keeper!

4-Wearing the same clothes continuously for the whole weekend really doesn't make you smell as bad as you'd think. Or everyone else smells just as bad. Either way, win.

I spent the last few days camping at End of the Road music festival. It was incredible; the music was amazing, the company even better (big shout out Ben, Dave and Stew) and I lost count of how many pints I polished off. (Thanks again Ben, Dave and Stew, I think I owe you all at least seventeen drinks...)

But the name is apt- I arrived feeling a little at the end of the road myself. My days are punctuated by moments where I feel like I've hit my limit; losing my shit with a child in true fishwife style just within earshot of the general public; watching, recording and evaluating yet ANOTHER seizure, realising B has gone a little too far with the sensory-seeking gagging thrills and is covered in vomit, or considering exactly how much freedom of speech I give my six year old when she regularly rolls out embarrassingly acute observations in utterly inappropriate settings. These are the details of my cul-de-sac life. While this is a pretty personal perspective, there's also this lingering feeling on a wider scale; stuff that makes me question where exactly we are headed as a human race.

The images of a dead baby boy which hit our social media feeds and instead of gut-wrenching grief evoke crude, detached us-and-them debate. Standing in the safety of our homeland feeling content to pour judgment on those audacious enough to be born in the conflict zones we helped create. Opting out and buying in so easily to the media shitstorm surrounding refugees because it costs our conscience less when they are someone else's problem. Viewing crisis after crisis as some sort of sick entertainment, our voyeuristic curiosity de-sensitising us and dehumanising the people involved.

Have we reached the end of the road?

The path we've walked so far has been potholed with atrocities; horrors recent enough to remember in our history books but seemingly removed enough to forget in our hearts.  And while the refugee crisis currently takes prime position on the world tragedy stage, our smaller scale attitudes add fuel to the raging fire. Parasitic subtleties; initially harmless but eventually lethal, feeding from a potent mix of sensationalism, apathy, and scapegoating.

The pitied look thrown in the direction of the wheelchair user; our inner monologue breathing a silent sigh of relief. Relief that we are not them. The almost-mute judgement heaped upon the mum in the supermarket whose fourth kid is pitching a shit-fit over a packet of smarties. Almost-mute, but the incessant screaming forces a tiny tut from our lips; small to us, but heavy enough to break that mum today. The torrent of words we can't stop bubbling up when we pass that girl; the one who's all arse cheeks and boobs. She could really use a lesson in self respect. Our crushing cynicism when we cross the street to avoid the Big Issue guy, he probably just spends all the money on drugs anyway. 

These are the seeds of segregation-the promotion of an us-and-them mentality even on the lowest level- so small and yet so laden with potential. With careful watering from an agenda-driven media they flourish into full on racism, sexism, homophobia, xenophobia and whatever-the-fuck-else-you-want-to-place-blame-on-o-phobia. 

Have we reached the end of the road? 

Despite my incessant optimism and hope for a brighter future, this feels heavy; an ever desperate unfolding of events onto an ever-darkening horizon. Coming to the festival made me think again. On the first night we sat around a giant campfire- people together being people in the warmth of the flames. Sitting round that fire, chatting and connecting on a baseline human level triumphed over differences, those differences scattered by in-the-moment, shared human experience. There is no us-and-them. Just us. The human race. We all count. 

One of the most powerful experiences I had was watching Sufjan Stevens play. His lyrics are raw, his performance slick but incredibly intimate, and he emanates the kind of fragile beauty which only comes from the willingness to get vulnerable and be real. The thing that takes Sufjan to another level isn't his gorgeous voice, or his stunningly beautiful stage set, but his pointed refusal to be anything other than painfully honest. In a field surrounded by thousands of other people, the atmosphere was charged with an unshakeable sense of stripped back humanity. I found myself holding my breath while tears streamed down my cheeks, as though breathing would somehow scatter the ethereal vibe that had settled. The two guys we'd met the day before offered me an encouraging hug (thanks guys, really), and in that moment nothing else mattered. I allowed myself to feel; something I'm usually very guarded against because of my need to function well for my kids (especially B), and the whole process was sharply cathartic. 

We all have shit to deal with, and we're all in this together, delicately human in a world where common ground is so much vaster than difference. 

So the End of the Road thank you. I will be forever grateful for the renewed focus of us, together, as humans in a world where the us-and-them mentality is dangerously prevalent, and I will try my best to step up. As a wise man once said, a few dirty drops in an ocean don't make the whole ocean dirty. Ghandi, you're so on the money. Until next time...

'My humanity is bound up in yours, for we can only be human together.' Desmond Tutu













Tuesday, 4 August 2015

Across the world in seven days

It’s hard to describe the feeling. The feeling when you walk into a room full of strangers who you instantly recognise as family. People from all corners of the globe who are linked intimately with you through random happenstance (I only just learnt that was an actual word- I LOVE IT). People who get it, who face the same struggles daily and who understand, really understand, how crazy life is without you ever having to utter a syllable. Last week I had the incredible opportunity to attend my second conference for families affected by dup15q syndrome, the rare chromosome disorder my son B has. The dup15q expresses itself differently in different individuals, but the overarching symptoms are the same throughout- low muscle tone, autistic features, communication difficulties, sensory processing disorders, cognitive disabilities and seizures. Living with this cocktail of issues is hard, and a big part of that difficulty is the isolation factor. Families with kids of the same age are now able to do things that are just impossible for us with B, and while we have a handful of friends who love us whirlwind chaos and all, our life is on a whole different trajectory. Sometimes that path sucks balls, I’ll be honest, and other times I wouldn’t wish for anything else.

The conference was amazing for a few reasons, and ironically challenging for those very same reasons. Learning more about the condition from people who are constantly researching was inspiring to say the least, but navigating the extreme cultural differences took a lot of effort. Our NHS in Britain is undoubtedly a broken system, but a system I am eternally grateful for none-the-less, and something I utterly believe in to the core of my being. Over in the States insurance is everything, and your level of healthcare depends on the premium you are able to afford. I still don’t fully comprehend it, but there is a chasm of difference in the way the two systems operate. As a result (and I’m speaking from my limited perspective only) more drugs are available over there, and  patients can ask for procedures which would be considered unnecessary over here. Here I battle to get an EEG done regardless of the fact B has not had a single seizure-free day since his epilepsy started, and he falls too far outside the box for anyone to really understand what’s going on with him. BUT all our care is free, for which I am hugely grateful, and I still stand by the socialist ideal of every person, regardless of social status, being equally able to access good healthcare. That being said, our government are pulling money from all the wrong places right now, health and social care bearing the brunt of those so called ‘austerity’ cuts. Before I go off on my political high horse, I’ll steer it back to the conference! This cultural difference was tricky to helm, especially because I was one of only a few non-Americans, and of those, the only Brit. The whole time I spent there involved sifting through and taking away the info that I thought was most useful to communicate to B’s team over here. I’m hoping they want to listen, because I honestly don’t want to shout.

I’m not an easy crier- anyone who knows me will know that. Bit of a heartless bitch if truth be told; a product of background, circumstance and temperament. I have no issue being me, but from what I could gather at the conference I was again in the minority on this one. From day one the raw emotion in the sessions was tangible; healthily so- being there is like coming home, the kind of special camaraderie that only comes from shared experience. The shared experience of a life you never imagined or planned for. But I will admit, there was one moment that had me sobbing. On the third afternoon a documentary following four families living with dup15q syndrome premiered (to watch, please head here). It was beautifully done; honest but hopeful, raw but real, and gave a gritty glimpse into the issues our families face daily. One of the children on the video had intractable (difficult to treat) seizures, similar to B, and happened to have a seizure on camera. Watching B have seizures is part and parcel of my everyday; I’m almost immune to the emotional impact, mainly because I have to function. If I lost it every time I saw B seize, I’d be a dysfunctional mess- something I simply can’t afford to be. Watching someone else’s kid go through what we see daily was another thing entirely though; it hit me like a brick. As I dissolved into tears, so did my friends around me, and the genuine shared sorrow was something that I will never forget. In that moment, the isolation evaporated. These people got it, and they were hurting because I was hurting- pissed off at the shit deal our kids get. There were no clich├ęs in sight-just extreme empathy- no words necessary.

Being a self-confessed geek the science meetings were right up my street. Learning about the mouse models they have created which over-express the same region duplicated in the affected kids was fascinating. One step closer to creating pharmaceutical intervention (meds) to combat the specific gene over-expression. Amazing stuff. There is constant research going on, research which may, in a few years, offer us a real solution to the varying issues our children face. Awareness raising in the meantime is key- something I do through blogging and through conversations with those of you I see face to face. Something I hope you all don't get utterly fed up with.... but hey, welcome to our life! 

We constantly walk the line between wanting B to be the best he can possibly be, to reach his potential (something we want for ALL our children), and acceptance of where he is right now. I wouldn’t change him for the world; if I took away his genetic condition he wouldn’t be him. Do I hate seizures? Fuck, yes. I’d take them away in a heartbeat if I could. And the other medical bits that are unfair and make life tricky? Yeah, they suck. But the essence of who he is, the genetic hardwiring written into every cell in his body? Honestly, I wouldn’t swap that for the world. The kids I met at conference reminded me again what it is to be human, stripped back and laid bare. They are all incredible, awe-inspiring individuals, precious just as they are. What’s messed up is society’s idea that worth is based on contribution, or looks, or academic ability. Bollocks to all that. As Einstein once said “What can be counted doesn’t always count, and what counts cannot always be counted.” Never have truer words been spoken. Our kids count. Not as an afterthought, or a pity-thought, but as people who can teach us a hell of a lot about the real deal with life.

Big thanks to all of you who share this journey with us- we need you. Especially when we appear to be coping, we need you. We’re experts at looking like we’re managing when actually it’s constantly ninety miles an hour just to stand still. But just remember too- you need B. You’re all lucky, as are we, to have a kiddo like him in your life. He has a heck of a lot to teach us all. Get involved! You’re always welcome…. :D





Monday, 29 June 2015

Monday

Today is Monday. And today I am exhausted. After a couple of weeks of feeling like we were winning the battle against epilepsy, we had an epic fail over the last few days. I can’t describe exactly how draining this journey is; every single day is an unknown and the Lennox-Gastaut syndrome demands every ounce of our energy in caring for B.  Up until now the most prevalent seizures B has had have been obvious. Big head or body drops, being flung backwards across the room, being unresponsive and vacant. Distressing to watch, and time-consuming to record, alongside the constant background decision making on what necessitates extra meds intervention versus what B can cope with. The seizures are so sneaky though. Once you think you have a handle on what’s going on, it all changes.



On Thursday B needed to be woken up- for a child who regularly wakes between 4.30 and 5.30 am bouncing off the walls and ready for the day this was highly unusual. More alarm bells started ringing when he couldn’t physically climb out of bed without support. He was shaking all over, clumsy, minimally responsive, uncoordinated, unable to feed himself breakfast, and most notable of all, unable to walk properly without someone helping him. I wrote in his home-school communication book* so school were aware of his presentation, and sent him on the bus. At around 11am I had a call from school, who were concerned that B hadn’t picked up, in fact he was progressively getting worse. It’s worth noting at this point that every time my phone flashes up with a call from school, my heart is in my mouth. It’s almost always a bad thing. In the early years it was usually due to a fall or bump (hyperactivity plus clumsiness does not a bruise-free child make), nowadays it tends to be around the seizure shit. Although I’ve never admitted this out loud, a tiny part of me always wonders if they’re ringing to tell me the unspeakable- whether that phone call is THE phonecall- the one where they tell me it’s all over. That we’ve lost him.

They phoned again a while later to tell me he had fallen asleep. I advised leaving him an hour and waking him then if he hadn’t woken independently. Cue another call an hour later to let me know they couldn’t wake him up. At this point we decided together to intervene with seizure meds to try and break up whatever the hell it was that was going on, which apparently didn’t really do much. B slept the rest of the school day, briefly woke up and ate something, and then promptly climbed on me and fell asleep again. This whole pattern continued until Saturday evening. On Sunday morning B was brighter, and continued to progress until by the afternoon he was back to his typical self. We did however begin to see some new odd movements which may be different seizures emerging. Watch this space.

Due to a combination of poor communication, logistics, inexperience (on both ours and the local hospital’s part), and the fact it was a weekend (I shit you not) we couldn’t get the required EEG that would have confirmed our concerns around B being in non-convulsive status epilepticus. So if any of you out there are thinking about going into status, make sure you don’t do it on a Friday in Dorset. Poole EEG department ain’t got time for that shit. (In fairness, a certain member of Poole EEG department didn’t have time for that shit; the other experiences we’ve had with those guys have been great.) Non-convulsive status epilepticus is effectively a constant seizure state- in literal terms, an actual headfuck. In NCES all of a person’s electrical signals to co-ordinate their movement, thought processes, and general function are completely scrambled; hence they appear dazed, confused, lethargic, vacant, unable to perform usual skills and just ‘not there.’ Although not imminently life threatening, leaving a person untreated in this state for prolonged periods of time will cause neuronal damage; in other words, permanent brain damage will start to happen. In a child like B we simply cannot afford for him to lose communication, skills and function that has taken years to consolidate.

So, after two incredible weeks of fairly good seizure control, the beast returned with a vengeance. It was hideous to watch, so I can only imagine what B was going through. Lessons have been learned. Next time we won’t wait to see how it pans out, we’ll act ASAP with the urgency that should be applied to any child showing unresponsiveness and complete polar opposite behaviour to their normal. Especially since this is a child with a multitude of diagnoses and difficulties. Today I have spent time debriefing with school and speaking to medical staff about protocol should this happen again. We’re all on the same journey aboard the Unknown Express to Who-The-Hell-Knows-Where. The ride is turbulent at best, soul-destroying at worst, we are all shattered, and we seem to be off road in a place where few have been before.

Today I want to get off.


*The home-school communication book is a vital piece of kit for children like B. Imagine sending your child to school with no ability to communicate how their morning had been, how they were feeling or what was happening to them at any given moment. Then imagine picking your child up from school, asking about their day, and them being incapable of answering you. This is where the home-school diary wins out. Every morning we write the things B can’t say, and every evening we check out the communication from school so we know how his day has been. A little extra piece of admin every day. Because the universe thought we didn’t already have enough.