The Road to Recovery

I got to thinking about recovery the other day.

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I went out for a walk down to the river. I was having a good day, physically and mentally; I could step across the rocky shore with surety, I knew the exact amount of ‘flick’ to put on the slate shards to send them skipping merrily across the water, I leap onto the small rock in the path and know, not just in my head but in my muscles and bones too, that I would land and balance on it. For once I was unconcerned about the other people, and even if they were concerned about me, I knew how I would reply to whatever they asked me. Things came easily.

Not every day is like this.

One gets use to watching one’s step when it’s the norm to trip over a totally flat surface and then walk into a table you were deliberately trying to avoid. One gets used to watching one’s mouth when around strangers in case the words come out in a garbled mess. Some days are better than others. That day was a good day. Today, not so much. My fingers feel heavy and stiff and my words are sticking somewhat on the way out.

I redefine my normal every single day.

It’s exactly the same with depression.

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The recent sad news of the death of Chester Bennington got me thinking about a conversation I had with a friend of mine about four years ago about the cyclical nature of our depression; some days we’re up and good, some days we can feel ourselves falling and sometimes we sink so low we wonder if we’ll ever see the light of day again. I was a few months out of therapy at that point but still having a lot of very Bad days, while he was still very much in its grip (a grip he wouldn’t break for a good few more years). I remember him saying that he didn’t think we ever really recovered from something like this – we either dealt with it or we didn’t, but it would keep coming back.

I poo-pooed it somewhat at the time, because I wanted to be depression free, but when you think about stories like Chester’s or Robin Williams’, even the nature of my own ‘sticky patches,’ when I feel like I’m moving through treacle and which can last for weeks, made me think he may have had a point.

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The rate of relapse after completing CBT for depression can be up to 50%, which is a frighteningly high number. This doesn’t mean it’s an ineffective therapy, but I think there’s a view out there that therapy is a cure. It’s not; I see it as more of a toolkit.

Thing is, I think the people who develop these therapies may hold the same view.  For example, the end goal of CBT is to teach a person new ways of thinking so they no longer perceive themselves as useless or ‘bad’ or whatever else. The way each individual therapy does this changes according to whatever root philosophy it adheres to, but the ultimate goal, in the end, doesn’t differ significantly; change cognitions, avoid relapse. However, a toolkit isn’t a cure; it’s more of a functioning aid, like using transferable skills in several different jobs.

It applies across the spectrum of mental illnesses as well; ex-drug and alcohol addicts are always ‘recovering’ addicts; medically, they are never ‘recovered,’ which can be severely problematic in getting on with their lives. Having that label means there will be a lack of trust that follows them forever. It also implies that addiction never fades, that such personality traits are set in stone.

There’s no recovering from dyspraxia and autism, and anyone who says otherwise is deluding themselves (seriously, every time I hear about ‘finding a cure’ for these things I want to punch somebody). But I wasn’t born with depression the same way I was born autistic-dyspraxic. Personality is always mutable; I’m not the same person I was five years ago, the same way she wasn’t the person I was five years before that. So doesn’t that mean that people can recover in the same way?

Anecdotally, it would seem not. Something I recall reading about Robin Williams went something along the lines of, “Well, he was in therapy for years, he was in his sixties, why did he kill himself?” The response was, “Being in therapy for years is how you get into your sixties with something like this.” My own low moments, they cyclical nature and the way the Bad days just keep coming back…

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It depends on how stable you see personality traits. I think it also rolls back to how society sees mental illnesses and addictions, and whatever else as well. After all, we as humans take our cues from the world around us, and if the world around us thinks there’s always going to be something wrong with us because we have a mental illness, how how are we supposed to recover fully?

Chew on that.

Stay awesome, everyone.

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Both photographs were taken by me, please ask before reusing.

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Fidgeting with Widgets (and Other Distractions)

Hey all!

Well, look at that, I have a couple of free Fridays. And I bought a fidget spinner.

There’s been this whole Thing about fidget spinners ever since the craze started a couple of months ago; I don’t pay all that much attention to fads, so the first I heard of it was when my friend posted something vilifying the authorities for banning them in schools. Then suddenly it’s like BAM: they’re everywhere. Schools are getting them banned because they’re a distraction for the kids, I see people cracking them out on the street, on the train, they’re in shops for anything from a fiver to twenty quid…marketed as a stimming and a focal aid all in one.

It’s a genius idea, but I was sceptical at first, I’ll freely admit. I stim a lot. I run my nails over my hands in regular, prescribed patterns that I’ve been using since I was about five. If I’m not doing that, I’m picking at my nails or picking at my acne. Always listening to music; I need background noise when I’m working or cleaning up. I require a lot of sensory stimulation, which is something I’ve come to accept. I am a consummate fidget, and my initial thought was, ‘Just spinning something around in my fingers is not going to be enough.’

So, I bought one. No harm, no foul, right?

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I was half right; in many ways, it’s not enough. I think the acne-picking is a stress-relieving compulsion rather than a habit – one I’ll have to deal with some day when I have the time and inclination. I still scratch my fingers, my arms. But, my nails look better than they have in a very long time, and I’m having a go at retraining myself. If I feel the need to scratch, or pick at my nails or whatever else, I spin for a bit. And as a focus aid…well, I forgot I was spinning it during a lab meeting today, and as someone who constantly suffers from wandering thoughts, I can say with some certainty that it definitely helps there.

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So I got curious and did a bit of digging around. According to experts, there is no scientific evidence that they aid focus for children with ADHD and autism. There was a nice article on LiveScience about attention spans in kids, both neurotypical and neuroatypical; so, there have been plenty of studies on attention, but almost none focusing on fidget spinners and their ilk, which have been around for a while. In my opinion, the spinners haven’t been out for long enough to really gauge how honestly useful they are in improving attention in children. So, I think saying ‘there’s no scientific evidence and there never will be’ is jumping the gun a bit. There’s some evidence out there that fidget toys can be useful in reducing anxious habits like skin picking as part of a wider therapy; they are, however, woefully understudied in clinical, domestic and educational contexts as a specific aid.

Then there’s the matter of design. I have a metal one; my boyfriend took one look at it, found a stray bit of metal (not sharp) hanging off it, and wrote them off as not worth the money. Bit premature, I though, but considering the thing was half price (down from £10), it may be a fair point. Customs at Frankfurt Airport in Germany are having to destroy 35 tonnes of ‘unsafe’ spinners imported from China, as the LEDs embedded were embedded so poorly that they were a choking hazard. I imagine when they fall apart, they do so spectacularly and at high speeds.

They have their downsides, there’s no doubt about that.

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Anecdotally, and in practice, though, they seem to be working out. Fidget toys and other sensory aids are used extensively with children, in clinical and domestic situations respectively. There’s some concern about how schools banning fidget spinners might negatively impacts the learning – and indeed, the social – experience of neuroatypical children, one person’s focus aid/stim is another person’s distraction. This blog post from AustismAwareness.com sums it up very nicely. There’s also evidence to suggest the stimming IS the focus tactic for people with autism (which unfortunately I haven’t got the link for); does it then matter what the stim is? And it begs the question; if they are so widespread, why do they seem so understudied?

I like my spinner, and I like that it lets me fidget without looking overly weird (not that that’s ever mattered much to me). I think the major problem is that people have is the anti-social nature of fidgeting. I fidget to focus and someone else finds it distracting. Where did we get this idea that fidgeting was something to be avoided? I can’t imagine what it would be like not the be a fidget, and I’ve never quite comprehended how people sit still. I think then expecting me to sit still to ease the experience for everyone else is asking a bit much.

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What I would say to schools and other institutions looking to ban them is; think about who you’re impacting. Yes, some kids in class would benefit from having them remove, but also think about your friendly neighbourhood neuroatypical who may be relying on the hum or the vibrations of the spinner in their hand to pay attention to what their teacher saying. This is why special needs measures are supposed to exist; don’t screw over a child’s education for the sake of the majority. And to the experts; run some proper, scientific experiments on specifically fidget spinners, or just fidget aids in general; don’t assume something won’t work simply because there’s no basis for it.

Stay awesome, everyone. And happy stimming!

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Pink Metallic Fidget Spinner picture is mine, ask before you reuse please.

Leave My Diagnosis Alone

I mean here’s the thing about the proposed reduction of autism diagnoses; it’s bullshit. Here’s the other thing; they’ve already done it.

Okay, allow me to explain; the UK NHS rolled out an idea the other week to reduce the number of autism diagnoses to only the most severe cases, which I only didn’t mention last week because I’m also grappling with one of my not-as-infrequent-as-I-would-like low mood episodes, brought on mostly by stuff outside my control. They’re citing stuff like ‘waiting times for diagnosis’ and ‘allocation of resources’ but the point is, it’s quite severely damaging for people like me and my peers who barely make the cut as it is, and have to fight for every additional resource we need because we have all the effects, but on paper we don’t qualify.

The problem I have, in all the outcry over this, is, in a lot of ways, it’s already happened.

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Allow me to explain further; clinically speaking (and drawing heavily on my lectures here), autistic spectrum disorders are split into four syndromes:

These are diagnosed by the DSM, or Diagnostic and Statistics Manual, published by the APA and is used worldwide for the diagnosis of psychiatric and developmental disorders. It’s also the research criteria used by academics and researchers, but that’s beside the point.

The most recent DSM – DSM-5, the fifth edition released in 2013 – made several revisions to autism and autism diagnoses; namely, the removal of Aspergers and PDD NOS to be replaced by the umbrella term of ‘Autism Spectrum Disorder.’ They’ve also tightened the criteria, in the name of making diagnostics fairer and more valid. What they don’t realise, as the ARI article points out, and that the NAS point out in the BBC article, is that this runs the risk of us ‘high functioning’ lot getting left out in the cold. Just because we have higher IQ’s and are better able to learn how to socially function, doesn’t mean we don’t need resources; extra tuition, more time in exams, specialist equipment. It’s tough enough getting that help, and without that all important piece of paper telling the Powers That Be that we are entitled to them, we’re not getting squat.

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Under the rules, I have never qualified for an official diagnosis of Asperger’s, despite showing all the classic traits, and it was like a kick in the gut when my lecturer, quite calmly, explained that a part of my identity no longer existed, consumed by an umbrella term that doesn’t necessarily describe me the same way as ‘dyspraxic Aspie’ does. What might happen within the NHS is far, far more drastic a shift and if that happens, hundreds of thousands of people like me face the same kick, but from the system that’s supposed to care for them, not throw them away. I love the NHS, but sometimes it can be a bit bloody stupid.

I’ve lived with this ‘borderline’ thing for 23 years, and I’m used to it. There are people out there who have never been diagnosed, and now, under these DSM-5 revisions, might never be. And under the new NHS plans, still more people could lose out. That cannot and should not happen.

Hopefully it doesn’t happen – the NHS plans are only plans right now – but the things rolling around in the news these days, like dementia taxes and the US President pulling out of the Paris Agreement (aka. the biggest and most comprehensive climate change deal ever), I’ve rather lost faith in the abilities of the people leading us to make sound choices. Hopefully all that changes in the next couple of weeks, but we’ll see.

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Anyway, I should put that out of my mind for a while. It’s my birthday this weekend, and I’m attempting to organise a party. This could either go splendidly or down like a lead balloon. Low mood brought on by consistent, niggling pokes the universe seems intent on giving me right now is not doing wonders for my state of mind.

Oh well, I’ll crank it out. I usually do.

Stay awesome, everyone.

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Taking Care

Evening all,

This week is Dementia Awareness Week over here in the UK, so I want to talk a bit about my grandma.

I read once, in a book discussing witchcraft practices, that it often skips a generation, like a grandmother teaching a granddaughter how to make crafts. When I think of my grandma growing up, that’s how I think of her. Not as a witch (I think she would have had an aneurysm if anyone had called her a witch, although she happily helped me with making broomsticks and witches’ hats during my ‘Worst Witch’ phase), but teaching me how to knit and sew and plait, and make cards and bookmarks with stickers and fine-liners. She was active in the WI as well, doing much the same thing in her community. But when my grandpa died, it was like a switch flipped. I remember her saying ‘Losing your life partner is a very different kind of loss.’

She wasn’t wrong. The initial depression passed, sort of, but the agoraphobia and anxiety didn’t. Then she started forgetting where things were, and when things were, and having conversations twice. She was diagnosed with dementia – Alzheimer’s – about two years ago now. The last time we met, she didn’t recognise me until I took my hat off. That was last Christmas. I doubt she’d recognise me at all now.

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It’s sad, in some ways. She, who was once so independent, who used to bodily turf Grandpa out of the kitchen so she could bake or cook, who had no issues teaching me some respect for my elders, is now almost totally dependent on carers and nurses. She, who could talk for hours about her family, and what it was like when she and grandpa were first courting, now has trouble remembering what was said five minutes ago. But in other ways, she’s very lucky. Dementia itself is insidious by nature – cognitive changes which occur suddenly and devastatingly tend to be result of stroke or traumatic brain injury.  Grandma never noticed the decline, or never cared enough to point it out. A report released earlier this week by the Alzheimer’s Society stated that 48% of people with dementia said they feared becoming a burden, and I think that being aware of the loss of memory and identity that comes with most forms of dementia is possibly worse than simply having the disease itself. But she’s happy where she is, and that’s the important bit. As long as she’s happy, I can’t feel sad for her. I feel worse for my dad and my auntie Helen, who are shouldering the majority of the administrative burden and who, unlike grandma, are more than aware of the decline.

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It’s not an isolated story, either. I used to do a lot of phone work for a charity for the elderly, and the number of people phoning looking for advice regarding their parent who had just been diagnosed with dementia, or a person with the early stage of dementia themselves, was astounding. And this is without the Tories’ latest social care policy announcement, which could see many people robbed of their assets to pay for their social care after they die; their new means test places people with assets of over £100,000 on the ‘rich’ end of the spectrum – well, okay, but included in this means test is the value of their home, which, unless they’re living in a council flat, is highly likely to be over £100,000. Considering it was much easier for a lot of people to buy their own homes back in the 50s, this means that, simply for having social care needs, a pensioner with dementia and their families could lose everything. They’re terming this ‘the Dementia Tax,’ and it’s clear why; those living with chronic and debilitating conditions which severely impact their ability to live day-to-day, like dementia, are those likely to be hit hardest by this. Rightly so, there are many calling this both ‘grossly unfair’ and ‘electoral suicide’, among some less savoury words – it strikes some of, if not the most, vulnerable people in society. Yes, in a lot of ways, my grandma is very fortunate; she has savings put aside for this scenario, and she has family to help her out. With any luck, she’s set to be happy where she is until the end of her days.

On a more positive note, I’m running 10km next Sunday in Manchester, in aid of the Alzheimer’s Society, who commissioned the report cited above (the whole thing is well worth a read) and who aim to support those living with dementia and their families, both at home and in the community. My JustGiving page is linked below, but don’t feel obliged to donate. Just, maybe have a think about what you’re voting for, before you cast your ballot – in the UK or elsewhere.

Stay awesome, everyone.

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Open Book

Hey there everyone!

Oh no, she’s back, what will we do? Well, exams are done with, I can stop panicking and begin thinking clearly again *rousing chorus of Hallelujah.* It also means I can get back to this with a bit more regularity – terrible as it feels skipping weeks, it’s either that or post something that makes no sense AND distract myself from my revision AND possibly have an all out meltdown. I hate the anxiety I get around my exams; I also genuinely need to give the rational thinking portion of my brain a pay rise – by this point it’s earned it.

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So this week, the plan was to talk about Guardians of the Galaxy 2 (which most of you ought to have seen, and I’d highly recommend it if you haven’t) and their autistic representation; however, World Mental Health Awareness Week was this week. Plenty of my friends have been doing cool things for it like webchats and articles and a favourite artist of mine released a music video based on recovery and relapse (here, if anyone’s interested –  I’m not taking any money for publicity, I just think it’s amazing), and to throw in my ten cents, I wanted to talk about books.

*Trigger warnings ahead for mention and discussion of self harm*

Trust me, it makes sense. I’ve been re-reading one of my favourite series this week to take my mind off the hideousness that is my research methods exam; Vampire Academy, by Richelle Mead (Goodreads Link). Before you all roll your eyes at yet another vampire romance fan and completely switch off – it’s not Twilight, it will never be Twilight, it is not even in the same league as Twilight. Fun fact – one main character has depression. Another fun fact – another has bipolar disorder. The way it’s handled here is that their mental disorders are intrinsically tied to the kind of magic they wield – psychic powers. Firstly, I love this because it lends the idea that awesome telepathic and healing powers should have consequences, which isn’t something I see a lot in young adult fiction. Secondly, it brings up a couple of things about mental health which I feel should be pointed out.

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Like many illnesses, mental illnesses and psychological disorders are not asked for. We can argue genetics and environmental stressors all we like, this fact remains immutable. There was a very cool article a few years ago which argued that depression was an allergic reaction to the world; whether there’s any true scientific background to this apart from this one study, I’m not sure, but it’s a very interesting concept. Regardless, neither Lissa nor Adrian can control or change the consequences their magic has, expect by cutting themselves off from it altogether, and this is mirrored in the real world. Regrettably, pills are not the quick fix for us mere mortals that they are for these Moroi, but there are very, very few people that can get out of mental illnesses without help. If you are one of those people, I salute you. But neither of them asked for this, and neither does anyone else struggling with mental health.

The second is the way it’s handled in popular media. The first book of the series (and there are six in total) was made into a film a couple of years ago – Vampire Academy, starring Zoey Deutch and Lucy Fry (can be found on Netflix) and like so many of these things, was really rushed and badly cut and would have been so much better as a TV series – hey, I criticise because I love. I think the biggest bone I had to pick was to do with Lissa’s self-harming, an issue close to my heart as some of you will know. In the book, her harming was a conscious decision, borne of depression brought on by a rare form of magic. For the film it was the same – except they cut out the conscious decision part, and had the cuts simply appear on her arm after magic use. Do not ask me why, to me it makes far more sense the book’s way, but maybe they’re trying to water it down for the poor little kids. Which gets to me.

I’m sure there are disorders where it does happen, but I, personally, have never known anyone with depression who just woke up one day having done awful things to themselves. As a rule, self harm is a conscious decision – maybe not a healthy decision, but a conscious one nonetheless. And I think dumbing it down for the sake of a target audience of young teenagers (13-16), at exactly the age that this could be becoming a concern for them, is a terrible idea. Numbers of under-18s presenting at A&E with self-inflicted injuries are rising (as of NHS figures October 2016), and as with many things, the more we talk and encourage talking about such things, the less this is likely to happen. Painting it as an unexpected consequence isn’t the most helpful thing on the planet; neither is Lissa’s best friend terming her a ‘freak’ when this happens.

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Yeah, I know, the whole ‘talk about it’ thing again. I’ve said before, talking about it is not the easiest thing in the world to do for someone with a mental illness. And why do you think that is? Nobody else will. There’s been a lot of talk in the last few years about teaching mental health in schools as part of PSHE (or whatever they’re calling it these days), and I think the more that mentally healthy people talk about it, and the more educated they get, the more comfortable people will become talking about their own issues. All we’re asking sometimes is a listening ear; a recent review quoted in the BPS Research Digest stated that the biggest factor in stopping self harming is family support. So dumbing it down or changing it’s emphasis in books and TV shows and films is maybe not the most helpful thing in the world.

Saying that, I have no idea how Vampire Academy got a 12 rating; mental illnesses aside, torture of minors and dead animals all over the place, anyone? My mum barely let me watch Titanic at that age, never mind Lord of the Rings or similarly violent things. And that was a PG.

Anyway, /rant.

I hope everyone’s had a good couple of weeks, and continues to have a good couple of weeks. One chapter ends, another begins…exams finish, project kicks in for real. Wish me luck.

Stay awesome everybody 😉

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Good Evening one and all!

My flipping beast of a laptop has decided to pick up the charming new habit of disconnecting from its battery if I pick it up wrong, so this might have to go up a couple of times…no matter.

Anyway, I’ve been stupidly busy over Easter, with both family and schoolwork, but it’s finally coming together and it’s all looking good.

So, in this installment of ‘What’s going on in Hannah’s head’ this week, I was thinking a bit about boxes. Mental boxes, not physical boxes. I just about finished my abstract philosophy essay this morning, and I’m pretty proud of myself for it. Maybe it is just a question of familiarity. But the thing about mental boxes, or labels, or whatever you want to call them, is that they’re quite a contentious thing these days. I spend a lot of time on Tumblr, when I get the chance, and when I’m not browsing my fandom tags (don’t judge me, okay) I’m skimming through the social activist posts that inevitably crop up on my dashboard. And most of them are on the same wavelength – “Let People Be Who They Are.”

Which is fantastic, but then you get into the argument of just where the boundaries lie, and that’s where you get problems. It’s like a sociological border skirmish.

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Here’s the thing about human beings – we like to put things in boxes. We like to label stuff – there’s evidence to suggest that we form impressions seven seconds after meeting a person, and stereotypes become formed by age 7. It’s probably a defence mechanism – we like to know what we’re dealing with. Ingroup/outgroup, and all that jazz.

Something that came up during my last ‘Philosophy of Psychology’ essay (let’s call it that for now) was that I can’t deal with abstract concepts, like theories with no scientific basis. Which is the whole basis of philosophy, as I see it – it’s all speculation based on either observation or one too many snifters (for further information, please see Monty Python’s ‘The Philosopher’s Song.’). Hence I finally grasped what the hell I was meant to be doing and promptly went, “Ah, f*ck this.” (The same is happening now, except I have more of an idea of how these people think, so it’s no so much of a holy mystery). But, anyway, something that came up between me and my mum was that I don’t do abstract. Like, at all. Stuff that I can’t put away under a label, or in a box, blows my mind.

Realising this was a good thing. I was able to tell him, “Be precise!” when I was doing some DIY on the farm over Easter with my Dad, rather than getting yelled at for getting confused (and then yelling back at him for being confusing) . Usually, I’m quite good at DIY, and at working with Dad cause we’ve had a lot of practice; but sometimes he trails off in the middle of an instruction, and then I can’t read his mind and get confused. Maybe a neurotypical could, depending on level of experience, but I can’t. Please, be precise, I don’t know what you’re thinking. I can’t extrapolate what you want.

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I think, as an Aspie, that’s why I like mental boxes so much. I like to have a category, I like to have a prescribed set of drills, I like to know what I’m supposed to be doing. I think maybe that’s why there’s such a lot of overlap between autism and OCD – it’s not just about the sensory stimulation, the tic-ing, the love of routine et al., et al…it’s about knowing what, or who I’m dealing with, which social scripts to access. The need to have everything where it should be so I can sort through it both mentally and physically.

It’s made more complex by the fact that my dyspraxia means I can’t always make my body or my words do what I want them to. Knowing who or what to expect makes it easier because I have time to activate the right script and practice it. You hear me talking to myself? That’s probably me doing just that.

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So, I see all these people on the internet, arguing about what constitutes a particular label, or what’s the best way of talking to people who identify with a particular group. And different names for the same thing, or different ways of referring to the same thing. Its like wading through a bramble patch. Hence I don’t really engage because I know I’ll slip up, so I stick to what I know.

Yeah, I’m aware of how closed minded I sound. But bear in mind this is the girl who didn’t engage in class discussion from the age of about 12 to 18, who had her first curry at 17 and thought she was brave for trying a korma (I still hate overly spicy food), who found it easier to lie about the fact she was in a same-sex relationship because it was preferable than facing the questions. Who had a complete sexuality crisis when she was in that relationship because she was changing boxes – from a girl who thought her bisexuality was a phase to embracing it fully (and loving every second, might I add).

I want to step outside the box, but it isn’t easy for me. I’m trying, but outside the boxes, I don’t know what I’m doing. I don’t know where the paths are, and I don’t want to get lost.

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As a species, we love boxes, and putting labels on them. For the people that don’t fit in a specific box, it’s tough. Hell, I don’t even fully fit into the Aspie box, but here I am. But labels can be empowering as well as stigmatising, so we shouldn’t throw them out altogether.

I suppose the end message is this: Box things up, but make sure you put them in the right place.

Stay awesome, everyone!

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Review: A Boy Made of Blocks

*Will contain spoilers for the novel*

Evening everyone!

You know, there’s very little that’s more British than wishing for rain while the sun is shining in a clear blue sky. We are never happy with the weather.

Okay, there’s a good reason for it; we need to roll out the lumps in the horse’s fields and we can’t do it while the ground is like iron, which means I get to ride the quadbike, which is AWESOME. And I just realised how incredibly middle-class that sentence makes me sound. I am so sorry.

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It’s one of the many things you don’t have to worry about in Minecraft. The earth always breaks when you want it to, and it regularly rains like a bitch. If you don’t mind the odd zombie hanging around (or a skeleton, God I hate skeletons), it’s pretty idyllic. The very ground beneath your feet bends to your will, which is at least part of the appeal of it for Sam in Keith Stuart’s novel ‘A Boy Made of Blocks.’

Some scene setting; Sam is eight, and on the autistic spectrum. He’s fairly high-functioning, but he had his moments – a lot. Alex is his father, and is, to put it bluntly, a complete mess. Jody is his mother, and perpetually stuck in the middle. Sam likes to play Minecraft, and Alex eventually realises that it may be the only way he and his son can reliably communicate. There are some other characters which move in and out of the story as necessary, but I would say they are more central to Alex’s story arc than Sam’s.

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The book is based on the author’s experiences with his own son, and I think that real-world edge really shows through; it manages to be both very true-to-life and heartwarming novel. It’s told from Alex’s perspective, so we don’t get a lot of Sam’s psyche; nevertheless, despite the insider view, I spent the first half of it wanting to punch Alex in the face (sorry mate), and the second half of him yelling at him to sort his life out. I can’t really blame him, in some respects. We’ve all been there, on occasion – life falling to pieces, no idea what to do about it, and burying our heads rather than try. It isn’t an excuse for not trying, though. There comes a point, even when depressed, one has to say ‘enough,’ and I think Alex was long past that stage – to the point I felt sometimes it was being milked for dramatic effect, but mental health issues aren’t overcome in a day, so Mr Stuart is forgiven. For now.

But I got so furious every time Alex got angry with Sam, whenever he shouted rather than tried to understand, whenever he gave up and snapped rather than tried to get down to Sam’s level, or Jody’s for that matter. Like he’d rather cause an argument because that’s what he’s expecting. There was a lot in the family dynamic that reminded me of growing up in my own household; not so much in terms of character personality, but in their interactions. It’s even true today, though these days my parents won’t even mention one another unless made to. It hit me quite hard in that area.

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No wonder Sam wants to run away and hide in a sandbox world. I did the same thing with storybooks. The same ones, over and over and over again, because they were predictable and therefore safe. I could deal with them. And Minecraft itself isn’t just a ‘run wild and free’ kind of game, even though you can build basically anything you want to. There are rules for it; all your recipes have to be exact or they won’t work, you can only pick up certain blocks if you break them with certain kinds of tools, certain things only spawn in certain places or biomes, it’s actually quite formulaic. You know what to expect. But there’s just enough freedom to make your own mark on the game. And okay, I can only really understand things once I’ve experienced them, that’s just the way I work, but I think the way it brought Sam out of his shell is actually quite accurate. In the same way I related (hah, still do) a lot of the world to what I read and saw in stories and films, Sam relates the real world to the virtual blocks of Minecraft, and in that way he starts to understand it. And so he starts to understand his dad, who starts to understand him, and it’s that understanding which starts to draw the family back together, in the end.

It was really beautifully done. And I guess that’s the point – if we don’t understand,or even try to understand, nothing will ever get better.

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Yeah, I guess it was one of those books which hit me in all the right places, even if the protagonist spent a lot of it annoying the hell out of me. And it portrays autism in a realistic light, rather than the overly positive or negative skews you can find depending on which media you access. Yes, I think it made a bit of a meal of Alex’s issues to try and create some drama and sympathy, but in terms of its portrayal of Sam and the spectrum, I thought it did a wonderful job of showing both the beauty and the strain. 9/10 would recommend to someone who was lowkey interested in the subject, or to someone looking for a starting point to learn about autsim.

Thanks for reading, and stay awesome!

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A Boy Made of Blocks (link to Amazon)

Minecraft (Mojang)

Diamond Pickaxe

Alex Skin

Broadcasting the Word

*raps* Guess who’s back, back again…

Yes, she’s back, she’s still alive (just about), and she’s having some pony therapy with her extended family down south. Just got back from a brief but lovely hack around the local farm; for those wondering, Josh is fine, but currently sporting the World’s Worst Haircut. Picture will not be forthcoming (yet, muahahaha…)

I’m still busy as hell, but I have got some good stuff stewing for when I have some more spare brain-space. So, what can we expect from the next few weeks? Well, I recently finished a book called “A Boy Made of Blocks,” about a boy with autism who learns to communicate with his family through playing Minecraft. As a borderline Aspie and a fellow player of Minecraft, I would highly recommend it, full review to come, probably later in the week. Still chipping away at that ‘Theory of Knowledge’ essay – I should not be complaining, I chose the title, I have nobody to blame but myself. Like I said in my last post, I’m not so good at abstract concepts, so there’ll be a bit on that, and why it’s so important for me to be able to fit things into boxes.

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But first things first – my stepmother listens to Radio 2 a lot, and I happened to catch the lunchtime’ Jeremy Vine’ show today while I was doing some work in the kitchen. It’s a show which covers relevant issues in the headlines, and invites both professional and viewer discussion, and it caught my ear this week because Paddy O’Connell (covering for Mr Vine) announced a special medical section on ‘dyspraxia.’

BBC iPlayer link (begins at 1:08:05)

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Paddy was talking to a medical professional, Dr Sarah Jarvis, and a woman called Charlotte who has dyspraxia herself (for the first section). On the whole, it was really lovely and quite respectful (aside from some unfortunate language use…’This dreadful condition of dyspraxia.’ Honestly, Paddy). I did also think Dr Jarvis took a bit of a patronising tone at times, but I’m looking at this from an informed insider’s perspective rather than a layperson who might know absolutely nothing, and she’s actually doing a very good job of explaining it in terms of someone who might never have heard of such a diagnosis. Let’s be fair here.

They focus a lot on the motor aspects of the condition, but I was very pleased that they included a section on how tough exams can be for us, because we have so much trouble organising our thoughts as well as ourselves. Charlotte told quite a humorous story about not being allowed to climb ladders because she couldn’t get down them again; I hate climbing on stepladders, I simply do not feel I can balance. Eating soup as well; Good Lord, it can be a struggle. Bread is such a saving grace when it comes to mopping up spills. She also spoke at length about always being picked last for sports teams. I never really cared all that much about sports, but I always thought that was because everyone thought I was weird, and it was quite distressing, on a personal level.

It’s so nice, so so nice, to know that these experiences are basically universal. We are a small but interesting community.

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We’re still focusing on the negative though; plenty of the people calling in were talking about losing jobs, being considered weird, never learning to drive a car or ride a bike. What happened to the rest of it? The differences in how we see people, and the world, the creativity and diversity of our voices? The doctor, the presenter, even some of the guest callers took a very negative view of the condition, focusing on its limitations and the negative impact it can have on children and adults, how hard it can be for us.

This isn’t to do down the people who do find it very difficult – there are people out there who are more profoundly affected than I am. I was lucky in that I was a very physical child and did a lot of physical activities including bike-riding and horse-riding, which let me practice co-ordination. Horse-riding is used as a therapy technique for children with conditions such as cerebral palsy, it’s amazing for co-ordination skills. But I recall saying to someone, long before I even knew dyspraxia was a word, that while I could balance perfectly on a horse (I have a very good seat and I’m very hard to dislodge, even when the horse is corkscrew-bucking), I could not do the same on the ground. Slow, careful, and fumbling on the ground, absolutely unstoppable in the saddle. Funny, that.

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 I suppose the point Dr Jarvis is trying to make is, it’s a lot easier with a diagnosis. Dyspraxia is one of the most underdiagnosed developmental conditions there is, and being teased for just being ‘clumsy,’ or ‘weird’ or ‘disorganised’ or ‘stupid’ (I heard that one a lot) can make it a very negative experience. As a young and confused child, it is very distressing and can very much colour your view of your condition. I was diagnosed at 21, some people aren’t diagnosed until 35, some get lucky and are diagnosed at 5. With a diagnosis, one has a new awareness of why this is happening, and we can start developing coping strategies for dealing with these difficulties, no matter what age we are. And this is true of any condition; dyslexia, autism, dyscalculia, even things like depression and anxiety as well.

Of course, if we don’t have an awareness, we can’t give the diagnosis.

“Aren’t I lucky that I don’t [have dyspraxia]?” is also a really unhelpful phrase, doctor. Let’s try and promote understanding, rather than creating an ‘us and them’ mentality, yeah?

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So, we’ll finish with a word from Mr O’Connell himself:

“Dyspraxia; learn what it is, and stop taking the mickey!”

Stay awesome, Internet!

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Microphone

Horse and rider

 

The Abstract and the Concrete

Evening, Internet!

So what’s up this week? Well, I’m wrapping my head around prism therapy, getting my Irish on for Varsity, and trying to stop my dissertation from crumbling around my ears. I am also highly aware that the structure for this whole blog has gone a little out of the window. Bear with, I’m doing my best.

I’m also trying to get my head around philosophy, which is no mean feat. Fun fact about me – I don’t do abstract. Like, at all. And translating the abstract into the concrete is even worse. I remember having a huge row with my mum over the right approach to the theoretical foundations to clinical case formulation because I simply could not comprehend what she was on about.  And now I’ve decided to write an essay about epistemology (also known as the theory of knowledge) in qualitative research, and I’m wondering if I’ve officially lost it for good.

Though occasionally I manage to surprise even myself, ’cause I wound up with a merit for the formulation essay. Who’da thunk it?

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It’s a bit like a lot of academic stuff, I think – a little bit harder for me, because my brain simply doesn’t urn that way. Most of the time, though, trying to grasp philosophy is more like  putting diesel in a petrol engine – *cough cough* and it’s dead. And I genuinely not sure why. Way back in undergrad, I just kind of accepted it (and took Dutch instead of a philosophy module because f*ck you). Can’t get away from it now, though. I deal in the concrete, the stuff I can measure, and analyse and then apply to previous knowledge, never mind the theory.

It might be a global picture thing. It’s a fairly well known facet of autism that we focus on the details first and the big picture second. Or maybe it’s just the fact I think along ‘tramlines’ according to my mum, which I think is a bit unfair, but not untrue. Anyway the long and short of it is, I might have screwed myself over with this one. Oh well. Just make it sound good, mm?

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On the other side, my organisational, people/social and general ‘cool’ are in the process of being pushed to the limits by my dissertation project. It’s just me – big contrast to last time. Which is simultaneously better and worse, I think. Yes, it’s more stressful, but ultimately, my really independent and narcissistic side would far rather be solely in charge. And here’s where I think the dyspraxia kicks in again – or rather, my coping mechanisms do. I have my own way of organising and my own ways of doing things (also known as three calendars, a spreadsheet and a decent mobile data connection). I don’t know why, but letting someone else into that tightly-run ship just puts my back up. It was a big problem back in undergrad – my partner had all the ideas and I felt like I was being swept along for the ride, and I had no idea at all what I was doing. It’s all so different now. I don’t know what happened in the two years between undergrad and postgrad, but I grew a backbone, that’s for damn sure.

Not helped by the tech that record the data screwing me around royally the other day and not actually recording anything, so I now have virtually nothing to work with. Joy of all joys.  And I have to deal with people. Wow. It’s so awkward. But I do have a script. A literal script.

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Anyway, as I said, dear audience, please bear with me while I sort out the whirlwind that is currently my life. I want to expend a bit more on small details vs big picture vision, and I’ll keep you updated on the dissertation research (without going into too much detail, obviously). It’s just all a bit much to juggle.

Have a good week, and stay awesome

Moments in Time

Happy Friday, everyone! And Happy St Patrick’s Day, to those of you so inclined!

I’ve always enjoyed St Patrick’s Day for one reason or another. One, it’s one of the biggest drinking holidays in the calendar, excluding Christmas and New Year, and I do like a pint with (or without) my friends every now and again. The other is, being an Irish dancer means plenty of opportunities for showing off your footwork (expended on more in a previous post). I think this year is going to be the first in about four years that I’ve not been doing some performance or another for St Patrick’s Day. Unless I get reeeeally drunk tonight, at which point all bets are off.

But, I’m still spending it in Sheffield, which kinda makes it all worth it.

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I spent five years in Sheffield; my undergrad years, and then two years after that. I got off the train this morning and felt like I’d never left. I’ve always felt very at home in Sheffield, and I never realised until I went for a walk around it this afternoon just how much I’d missed it. (And the bus prices. Oh hell yeah, the bus prices). It’s not just the big things, like the poem above Sheaf Square or the Winter Gardens, or the Clock Tower on the City Hall. I went from Crookes around the Student Union, down through town and out towards Kelham Island and Hillsborough, and it’s funny how many tiny memories get activated just by revisiting some of these places after a long time. So many long minutes spent waiting at the lights at the Millsands roundabout on my bicycle – and avoiding all the tramlines on Infirmary Road (occasionally unsuccessfully). Wondering if I had the courage to go into the sex shop on Division Street (I never did haha). Salads from New Leaf. The office where I used to work. The best spot to cross the road on Crookes Road (which is a bitch, by the way). My old run route. The little spots on the pavement which mean nothing to anyone else and everything to you. All the tiny moments that make a life, not just an experience.

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It’s funny, sometimes, how you don’t appreciate something until you’ve been away from it for a while. There were times, living in Sheffield, I felt like I was living in a straightjacket. It’s such a small city, and so centralised as well, which means that I spent so much time in certain times in certain areas they got too familiar. I don’t know. It was fun going around most of my old stomping grounds again though. Some things have changed – a coat of paint here, a resurfaced road there – but most things are still the same. Including the rain. But hey, it’s the north of England, if it isn’t raining something’s wrong. If you’re ever seen that British meme about Northerners ‘needing your big coat,’ they’re not wrong.

I wish I’d been able to take some pictures, but my phone died and I didn’t take my camera with me, so sorry; pictorial evidence will have to wait for some other time – not to mention it was pissing with rain.

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I suppose the point is, you can be born somewhere, but it’s what you do with your everyday that makes your life. I was born in East Essex, and did nothing but schoolwork and horses. I was made in Sheffield, and did so much more than that. I call myself a Girl of Steel, not because I’m from Sheffield by birth, but I feel like I began there – that’s where the person who is me was born. It took a long time for me to start allowing myself to love myself, and it all started in Sheffield.

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Two big decisions need to be made – every single day. What to do with your days, and who to come home to at night. Life is what happens in between those times. Tonight, for me, it’s ceilidh-time and then my best friend, who’s putting up with me – sorry, putting me up – for the weekend. Tomorrow, I have no idea. I’m planning for violins and oaty shit to be involved. More life moments.

Stay awesome, everyone.

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Shamrock

Winter Gardens