Our lives are made of a billion events. Experiences all mashed up, stuck on, mixed in and piled up, each having had a tiny role to play in shaping the people that we have become (however much we try and forget some of them).
One of the most important lessons I learnt as my twenties faded into my thirties and motherhood inflicted a constant, unavoidable cloud of guilt over me, was that you can't outrun ghosts. I have spent a lot of time finding ways to avoid or hide from experiences only to find they were inescapable. Always there, carried around with me and mostly unnoticed, wrapped around me like an unseen second skin.
I have learnt to accept my experiences' inextricable influence on the person I have become in the same way I've learnt to care less about the law of gravity demonstrating its rather unnecessarily harsh judgement on my formerly pert cleavage. In the same way that somewhere along the line I decided that it was best all round to simply remain quietly thankful for robust under-wiring rather than visit a surgeon, I have also learnt (thanks to a history of bruised egos, love, anguish, loneliness and a rather wobbly sense of my own worth at times) that trying to pretend that I am anything other than what I am (someone who laughs until they cry over fart jokes, and derives disproportionate pleasure from imitating a chicken voice well enough that a baby chick will attempt to have a conversation with me) achieves nothing more than a lowered sense of my own worth. Whilst I can't claim to have achieved the if-you-don't-like-me-that's-fine-as-you're-probably-an-annoying-arsehole-anyway self acceptance that most post-50 year olds uphold, I have, at the tender age of 38 found enough confidence to work with my personality rather than continuing the exhausting habit of trying to be like everyone else. To be honest I think Dominic rather forced my hand on that one, but it's no bad thing.
While, of course, some life events barely even dent our emotional makeup others leave craters and jagged edges that we may never be able to smooth away. Accepting that we are forever changed by something that has happened to us can be unbelievably hard, but is perhaps the key to being able to let go of some of the bitterness and accepting that you are different and there is no way back, no way to undo the events that have passed, and perhaps even that it is time to take a step forwards.
But I am not suggesting that we are powerless, or at the mercy of a predestined fate, quite the opposite in fact. I believe that our experiences are one small part of the bigger picture. Because surely what really matters is not the events that have happened, but how we choose to react to them. That is where we take control and we can begin moulding and sculpting and choosing to be the person we decide to be, not the one our life has battered us into being. Ultimately the choice is ours, choose to be happy, or choose to live a life where we let a past that cannot be altered continue to control our future.
As I sit in the garden enjoying the sun and mentally scarring any neighbours unfortunate enough to glance out of their windows, I feel comfortable with the slightly lumpy, bumpy journey my life has taken me on. The fact that, in pressing the 'publish' button, I accept that my thoughts, that otherwise would be left unheard and uncommented on, are broadcast for whomever decides to come and read them is my way of celebrating the journey that my life is taking me on. Whilst still smacking of the self indulgent, it doesn't seem quite so egocentric as spending my time bemoaning everything that I think my life isn't. Which isn't to say that I like to pretend things are Stepford-perfect. I may still be insecure at times, still burst into tears at inopportune moments when I get frustrated (which is, hands down, the fastest way to lose an argument with a local authority middle manager, I don't recommend it) and still find myself being unreasonable defensive about sharing a packet of Minstrels, but all in all I'm pretty secure in embracing my insecurities. I'm also pretty sure that if I chose to believe that everyone was an insensitive cretin out to make my life miserable and if I was convinced that my life was in some way infinitely more miserable than 99% of the rest of the population, that I would, indeed, be miserable. Needless to say, for the most part, I chose not to be.
But understanding the person my experiences has made me is an on going, evolving process. I've learnt that however much I may attempt to scrabble and grasp at some understanding of myself as I've grown up, life will always continue to be a fluid and unpredictable experiment and you never can get too comfortable in the knowledge that you understand the rules. Sometimes life's experiences are significant enough to make you notice a change in your emotional landscape as it is happening, and other times a new tweak or dent will appear without ceremony. And there are, of course, times where you can see a change hurtling towards you and you brace yourself knowing that, good or bad, you're about to see the world in a different light.
One such event happened recently. A 'something' happened, an innocent word that will, perhaps, change the way I view one of my children forever. Perhaps just a little, perhaps a big, fat lot.
The diagnosis we weren't looking for
Sometimes I find myself wondering what it must be like to have gone down the more traditional route of parenting a disabled child. To have sat in a doctor's office and have someone pluck a small word from their mouth and push it towards me whilst I wring my hands and then sit on them because I suddenly become self-conscious of the fact that I look anxious. I would sit, I presume, obediently as I watched the word glide towards me, like a helium balloon, deflated just enough to have personality of its own, pausing to bob cautiously between us as we try to get the measure of the diagnosis that has just been shared.
The room would, no doubt, be the standard issue NHS consulting room design, overly hot but lacking warmth in any other capacity and have scuff marks on the walls in the place of pictures. I'm not sure when in my journey I have imagined myself having this conversation with the doctor, but I certainly, for a long time, expected a special needs pram to be awkwardly wedged in between me and the large yellow clinical waste bin that is always placed in the only space a pram or wheelchair could feasibly fit. I only ever imagined my youngest child next to me, tired and impatient. The appointment would of course seem agonisingly long for any child but not for the parent who has waited for an eternity to see this day come. To hear the diagnosis. The death sentence? The life sentence? The why and the what.
It came as a little bit of a surprise, therefore, to find myself in a spacious room, with a pleasant breeze blowing through the window and not a child in sight (let alone a wheelchair) when I got given the diagnosis.
When I registered the words I was in fact paused in thought, trying to dredge through slippery memories of Elliot's childhood in an effort to capture the elusive details that were so hard to remember, but the doctors in the Tourettes clinic seemed so sure I should be able to recall in an instant. My mind was caught off guard as a result, not only because I was busy with my internal monologue, but also because, being sat in the Tourette's clinic, I'd had the crazy notion that if any diagnosis was going to be dangled, it might be just be Tourette's Syndrome.
'Have you heard of something called Aspergers?' the very nice, ridiculously young psychologist gently asked.
This was a brain fart moment. You know where your mind is caught with it's pants around it's ankles and in the nanosecond it takes the neurones to about turn and figure out what the fuck just happened you completely miss the chance to utter the intelligent response that you know you are capable of. I think I managed to just about avoid drooling as my brain cells, when asked to suddenly asked to turn their focus to processing important information, only managed to muster an insignificant guff of stagnant gormlessness. And so there I sat, in front of a doctor handing me a life changer of a moment, and I greeted it with the mental agility of road kill. I think my exact response was,
Without warning, my experiences had just reshaped a bit of me and I felt it in a very visceral way, like the doctor snatched my brain, shook it and left me watching everything I thought I knew about my oldest child swirl around like the glitter in a snow globe.
Despite the fact that eventually I managed to re-engage the faculties and start responding in a rather more eloquent way, inside my head I'd been sucker punched. The motors whirled and whined as countless moments in Elliot's history got sifted through and re-filed under the heading 'oh shit, I think I just dropped the parenting ball so spectacularly it not only bruised my foot it also dented the floor and took the paint off the skirting board'. A sneaky left hook of a diagnosis for the wrong child. Hadn't been looking, so how could I have seen that one coming? Right?
Although, in all honesty, I think that, even if I (possibly) hadn't been paying attention to oldest child for the last ten (nearly eleven) years, my subconscious had been tapping me on the shoulder trying to make me acknowledge the signs.
Over the years I've had the privilege of meeting many parents with children who are somewhere on the spectrum. And in that time, I have had a fair few conversations with them where I had agreed that, indeed, Elliot appeared to have many traits in common with their child but that was more down to his rather quirky personality rather than the fact that his brain was wired differently. You would have thought, being relatively more informed than the average human being about a vast array of conditions and syndromes that my brain would have been screaming at me to suspect that perhaps it was more than a coincidence. Apparently my conscious brain was out for a long lunch though.
The not understanding why I had dealt with the information in front of me in such a dismissive way has puzzled me ever since I left the psychologist's office. Was it because searching for answers takes an energy that I didn't have? Or perhaps I felt that Elliot's behaviour was explainable, for the most part, by the crappy circumstances surrounding his childhood? It's true that I have a certain distaste for the propensity of some parents to to look for a label to explain every less than ideal behaviour, but would that be enough for me to actively avoid seeing an issue in my own child?
I think it's far more likely to be that I was simply too tired and too busy to want to notice. And yes I realise that admitting that this possibility has crossed my mind might tarnish your impression that I am some kind of impossibly perfect super-mum, but hey, even super heroes have off days… ummm…. years, you know.
Ok, I'm guessing that we are all pretty much agreed that the lead up to this pivotal appointment doesn't exactly represent my finest parenting moment. But, don't be misled, it's not that I see an Aspergers' label as a negative at all. After all if you've got to the stage where you are even considering it then I'd be willing to bet that life is probably less than rosy and one of the hardest things I have found with Elliot is not knowing how to help, (with a close second been fighting the desire to reach for the duct tape to give myself 5 minutes peace when he has a meltdown, which is multiple times a day at the moment). I wonder if it's the thought of all the hard work that goes into getting a diagnosis, then fighting to get any help that makes me immediately want to stick my head in the sand. Is it ok to be so tired from fighting one child's battle that you don't want to even consider the possibility of fighting another? Probably not. But is it understandable? I hope so.
But being forced into action is no bad thing. Any child approaching puberty is something to be eyed with suspicion with all the caution and apprehension you would a flatulent dog who has just stolen the garlic bread, but a prepubescent child that no parenting technique is able to influence is a ticking time bomb that makes me want to scream like a girl and dive behind the sofa. So the fact that the suggested diagnosis had landed like a cannonball in my lap one afternoon meant that, despite my initial shock, I actually left the office almost jubilant, which must have really confused the psychologist who had been building up to give me her best 'try to see this as a positive' speech. But I wouldn't have heard anyway, my head was buzzing with the possibility of available information that might just help.
You see I had been struggling to explain Elliot's behaviour for a long while, and I was exhausted trying to manage him and despite my best efforts he seemed to be getting more and more unhappy. When the doctor mentioned Aspergers it made me wonder if his behaviour was a simple case of life being lost in translation. That explained why he looked so blank when you tried to explain why his sister was so upset with him, that's why he got so upset, that's why he was incapable of reading the situation even when someone was screaming at him. Oh thank god, was all I could think. After ten years of failed parenting techniques I had finally, possibly been handed the potential to finally understand the way he works.
And so as a parent, I went into the appointment as one person and came out slightly remodeled, and I was ok with that. I spent time trying this possible diagnosis on for size, because even though the Tourette's team were pretty sure Elliot was on the spectrum, out of professional courtesy, they had already referred him to the Social communication (Autism) team in the same department (by way of a conversation in the corridor before they came in to see me), telling me that they really are the gold standard of Autism Spectrum Disorder diagnosis and there really is no doubt if they agree. But it did mean that before it was official that Elliot had Aspergers, I had to wait. He had to be tested, then I had to wait again for the results.
And so for the past few months I have been looking at my oldest child in a different way. Trying to understand him rather than just be exasperated by him and trying out the diagnosis secretly in my head. It's a bit like hanging a cut out dress on a paper fashion doll. I found it all a bit fiddly when I was a child. You pick up an outfit and hold it up to your paper person and, tilting your head to one side (because that somehow helps you see better) you make a judgement as to whether that outfit is a good fit or not. Even if you decide it is, the little flaps rarely hold the outfit choice on for long and no matter how often you try and make-believe, it's not the same as a real outfit and invariable flutters off, leaving your paper person bashfully standing in their underwear the second they try to do anything. Similarly I couldn't make-believe with Elliot, the moments were fleeting and pointless and I resolved to just wait and see.
I always envied people with a diagnosis, a club that you could belong to, books you could turn to, people who understand, advice that could be sought, a sense of belonging. And here I was finally flirting with the idea of becoming a member of a huge diagnostic community. One night, after the house had gone quiet, I typed the word Aspergers into my google search and watched as thousands of webpages were instantly offered. I immediately closed the page, too much information, and it felt wrong not having the officially official diagnosis. I was a bit the same when I was pregnant with Elliot. I couldn't bring myself to buy anything as I felt like a fraud when I stood in Mothercare fingering my way through the tiny baby grows despite my enormous stomach.
Instead, in a last-ditch effort to make what was happening seem real, I told my Facebook page, and, if nothing else, it reminded me how lucky I am to know so many parents with children on the spectrum who immediately rallied. As the news very slowly trickles amongst my good friends and people who work with Elliot I have noticed an interesting trend- the weird thing about a recognised diagnosis is that everyone has an opinion about it. You see equal to the amount of people who had expressed no surprise at all, were the people who's “Reeeaaaallllllllllyyyyy?” was so drawn out that I was shuffling my feet and biting my lip feeling like a school child accused of fibbing. Everyone, it seems has their own opinion as to whether or not this diagnosis is right or not and shares that with me. It put me in the strange position of arguing the opposite position depending on which opinion I was finding myself defending. So, apart from with my close friends, I just stopped talking about it, and decided to wait until it either became officially official, or we got told that it wasn't Aspergers and they weren't sure what it was (which, to be honest wouldn't surprise me in the slightest considering our history with trying to get a diagnosis).
And of course, since I have decided to ignore it, I can't get away from it. It's a bit overwhelming that there is so much written about Aspergers, so many support groups, charities, campaigns, awareness. I mean I don't even have to explain what it is, I could walk into a book shop and know I would find books on it. It's probably the polar opposite from the undiagnosed world that my other foot is very firmly lodged in, so I decided to just stay on the edge of this very populated pool for a while and perhaps dip my toe in eventually, when I knew if Elliot definitely belonged. If I belonged. I knew that whatever the outcome this would not only change Elliot's life forever, but it would fundamentally change the way I'd see my son. Most people say that getting a label doesn't change the child that they love, and ok, I accept that in part, but it does change the way I understand him, the way I'll interpret what he says and the way in which I parent him. These are at the heart of what it means to be his parent, so to say that the label that was dangling in front of us would not change anything is like telling me that a steam train hurtling towards me would leave my body unmarked.
And I got my answer in August, but it wasn't what I was expecting. The answers, because there were more than one, have led to more questions and more nights flipping through my memories searching for answers that allude me. This post has taken me months to write, not because the words weren't there, but because in the past few months my life decided to about turn and has heaved and buckled and warped. I have missed being here, missed writing, missed most of all being able to actually find the peace in my mind to start understanding how I feel about this new dent in my experiences. I'm hoping that the same life will let me find the space to tell you what happened next, and then also let me tell you about the enormous, rusty spanner that got thrown right into the mix straight after it all. Life, and the experiences it brings, is anything but boring.
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