I'm a mum of four, but I'm so much more than that. This blog is a glimpse into my mad world-the frustrations, joys and heartache of raising four kiddies, one of whom is particularly special, and trying not to lose myself along the way. Join me on my journey, I promise it'll be a hell of a ride!
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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.
Today was the dreaded budget review. For those of you not familiar with acronyms, let me throw out a few that will confuse the fuck out of you as much as they did me the first time I heard them.
NHS: National Health Service (gentle start, bear with me)
CHC- Continuing Health Care: a package of care allocated to those deemed worthy. Usually decided with the help of a (rapidly changing) 'standardised' assessment tool by Panel Gods*
CCG- Clinical Commissioning Group: The local NHS group responsible for the CHC pot of funding. Other responsibilities include recruiting 'appropriate' Panel Gods*
EBD- Emotional and Behavioural Difficulties: NOT my kid being a shit. Genuine issues.
SLD and complex needs- Severe Learning Disabilities and complex needs: I think if you look this one up there's a photo of B right there.
ASD-Autism Spectrum Disorder: a neuro-developmental disorder comprising primarily social and sensory difficulties.
SLT- Senior Leadership Team: School Gods…
On Tuesday, B's carer (who is an all round legend at all things B) brought him back early from after-school respite because his peg had split. A peg (stands for percutaneous endoscopic gastrostomy, if you're interested) is a tube that goes directly into a child's tummy, to allow parents and carers to administer meds and feed.
We initially had one fitted a couple of years back when B's seizures were crazy and we couldn't
medicate him orally- at which point he was having upwards of 70 seizures daily. Poor kid was totally non-functional and lost a lot of previously gained skills. The epilepsy B is affected by as a result of his chromosome condition is life threatening; he has many different types of seizure and because of this it's often very difficult to find a mix of meds that fully controls it. The peg has literally been a lifesaver for him- we're now able to medicate and instead of 70+ seizures daily we now typically see a handful of small ones, which have…
Half term sucks. It is not a yay-we-get-to-lie-in-and-laze-about scenario. Not when you have a B, who, from the moment he wakes up to the moment he goes to sleep, needs line of sight supervision. His favourite activity at the moment is posting. All the shit, in all the places. I am done with fishing tiny random lego pieces out from behind the radiator, un-wedging books from the miniscule gap between the DVD player and the unit, and risking my actual life by blindly groping around for toy cars amidst the wires behind the TV. The most annoying thing? The posting of random items IN the bedside lamps. Why? Sweet Lord, why? I have no idea what runs through that boy's head. All I know is such obsessive chaos does not a chilled half term make.
One thing that often escapes the radar of typical families is the complete lack of childcare for kids with additional needs. As in, regular childcare that we can ring up and book onto does not exist. I'll just let that sink in for a minute, in …