• Category Archives Random Musings
  • World Autism Awareness Day 2018

     

    Today, for the first time in years, I wasn’t going to write anything. I have struggled to sympathise with the stories, people, organisations, and even myself, and found that during the build-up to today I had descended into negative thought patterns and self-pity, largely due to everything that’s going on in the land of social media. A day which has previously seen me shout from the rooftops about how autism affects my family and others I care about, has this year seen me confused, bitter, and disaffected by the whole damn circus.

    The day, it seems, has become a battle between two warring factions: autistic people, and everyone else. The war zone is made up of zeros and ones, and the weapons are razor-sharp words fired by frustration and hatred. If the pen is mightier than the sword, then words typed in comment threads are more explosive and destructive than an atomic bomb. As the fight continues about puzzle pieces, whose voice gets heard first, what colour we should ‘light it up’, and which came first, the person or the autism? people are missing the entire point of the day. There is still a horrific lack of services and understanding for autistic people; there is still a vast number of people who struggle to obtain an accurate diagnosis, particularly females and a-typically presenting children; people still truly believe that vaccinations cause autism; and the very real discrimination that autistic people face – in education, employment, mental health services, law enforcement etc – barely gets a mention.

    Don’t get me wrong, it’s not that I feel the people arguing against things like the puzzle piece don’t have a point, it’s that they (and I) have missed the bigger picture by focusing on that tiny element. It can make the campaign look like a bit of a joke, and often completely obliterates any positive messages we are trying to convey.

    We know that Autism Speaks is an evil corporation which is probably headed by a reincarnated Hitler, but not everyone does (yet). Yelling at a mum for using the AS Facebook profile frame when she’s asking the autistic community a valid question isn’t going to make her come back to us. It’s going to make her defensive, stick her middle finger up, and run into AS’s open arms before you can say ‘eugenics’. Perhaps it doesn’t matter if the information seeker has lit up blue, red, gold, or purple, as long as they are asking the right questions, and listening to our answers we will be moving towards our aim of autism acceptance. You can always tag on the end why lighting up blue isn’t helpful, and is certainly not what autistic people want.

    Yes the puzzle piece is a bit of a bullshit symbol, but telling people to actively avoid and decry any organisation or person who uses it, without looking to see what work they do and how they support autistic people and their families, is equally bullshit. Not everyone has the NAS budget to change all their branding overnight, ya know! People have different ideas of what the puzzle piece symbolises, and it seems to be quite different across the Atlantic divide. I know that it’s easy to assume the worst when you see it (and I do remind those around me why that is), but most people don’t have the same connotations with it as Autism Speaks. For some people and organisations it symbolises their desire to help autistics through the puzzle of the allistic world, and the idea that some use it to signify that autistic people have something missing is completely mind-blowing to them. This is where intent really does matter; perhaps establish that before embarking on your seek and destroy mission.

    Let’s be honest here, as much as I agree with, prefer, and use identity first language, as long as what’s being said before or after the ‘label’ is kind, helpful, and honest, does it really matter? Like *really really* matter? By all means reply to whatever is being asked/stated with “this is my constructive answer/response which adds something to the original point/question. Oh, by the way, autistic people prefer person first language because autism isn’t separate from us, and is part of our identity, just like someone is Welsh, not ‘with Welshness’.” Stop replying with “don’t help this person who’s trying to learn because they wrote words down the wrong way, and I don’t like it.” Of course people need to listen to autistic people more, including the way in which we like to be addressed. Perhaps they will start if we welcome them with the patience, kindness, and understanding we expect from them.

    Everyone please remember that parenting autistic children can be very hard. Vilifying desperate parents who just, for example, want to learn how to manage behaviour they find challenging is a dick move. Save that for the cure hunters, vaccine fear-mongers, and conversion therapy (read ABA) touts. Of course, if something that’s been said is hurtful you should point it out. But again, intent matters here and if someone doesn’t realise why what they’re saying is bad, don’t yell at them for it, explain (nicely) why, and they are more likely to remember it and not get defensive.

    The things I have highlighted are definitely important, but they are *not* more important than equal access to diagnosis, changing the education system so autistic children don’t end up refusing to go due to horrific anxiety, why functioning labels are unhelpful, and that autistic children become autistic adults. They’re not more important than pointing out the lack of services available to help autistic people (particularly in adulthood), that abuse of autistic children is excused in a way that would never happen with allistic ones, that there’s a huge number of autistic parents of autistic children (like me) who are doing the best they can in a system that’s not set up for them or their child(ren), and that there’s a fucking measles epidemic (again) because people wrongly think that vaccinations cause autism and autism is more scary than a child dying. Let’s focus on what’s really important here, and put in the other things as footnotes and addendums.

    Most of us have a limited amount of energy to devote to the cause. It’s exhausting, and we’re not even necessarily allocating that energy wisely. So maybe we can put down our weapons; use the rest of the week as an armistice. Lift up autistic voices, spread science not hate, and answer questions honestly and empathetically. Let’s educate, not berate. To those who say that people won’t learn or listen if we’re calm and nice about it think about this: that is what some people say about autistic children who are being failed by the education system. They say that the autistic children don’t listen, and the only way to teach them is to resort to extreme methods (again, read ABA). We all know that’s complete balogna, so why are we doing the same thing?  Yes there are loads of people yelling their anit-autism hate speeches and generally being douches, but they are mainly in their anti vaxx echo chambers, locked away where they belong. They may be publicising their locked-down chamber, but thankfully most people disagree with what they’re saying and are pretty vocal about it. Let’s not stoop to their level. We’re better than that; we’re autistic.


  • Housing Crisis, Me?

    On Monday of this week, I received news that nobody who rents wants, but everyone fears. My landlord is selling up, and I have to go.

    I’m on a training course when this phone call is taking place; luckily, it’s with my Autism Puzzles family. I start the conversation about what needs to happen quite stoically, by the end of the call, tears were running down my face, but I was determined not to let on to my landlord. Who knows if I was successful. My team showered me in hugs and words of support, and immediately I had people asking me how they could help.

    I posted news of my woes on Facebook – I’m a 30 something in the 21st Century, of course I posted it on Facebook! The outpouring of support, and offers of practical help have been completely overwhelming. I’ve spent a lot of my adult life in very isolated social circles, and when I separated (amicably) from my husband, I initially became more isolated still. My horrendous mental health issues (still working on them, but doing a pretty damn good job) and my innate introversion made connecting with people at that time (May 2014) almost impossible. I’d become a full-time carer to the boys (due to special needs), had a brilliant best friend, but not much else by way of friends, and an intense fear of going out to do things. I also wanted to die. A lot.

    Over the past few years my support network has grown exponentially, and this current crisis has demonstrated this by the gallon! I’ve had so many people offer a roof over my head if I don’t find somewhere to rent before I must move out, and I’ve had more than one offer to be a guarantor. Almost everyone I’ve spoken to has asked how they can help, and I’ve had countless people say they’re happy to shift boxes when the time comes.

    The problem is, regardless of my income, and the fact I’m a pretty decent and clean person (well, since reading the book “How to Unfuck Your Habitat”) landlords fear me. You see, I’m on housing benefit. *Cue sinister music*

    I have been looking for two days (not long I know, but ye gods, I don’t have much time), and in that time I’ve been interested in about 9 properties, had 5 rejections before I even stepped foot through the door, 1 viewing which I liked but the agent isn’t sure the landlord will accept me, and the rest haven’t come back to me. I have more than enough money to pay, I have almost three years of rental payments and six years of mortgage payments to prove that I can pay on time without defaulting, AND the ability to secure a guarantor. This, however, isn’t enough for the “elitist Tory bastards” (Jones, B, 2017). This is making the whole process unbelievably stressful.

    I have had mental health issues on and off for the majority of my life, and am very black in white in my thinking (even though not everybody sees this). Due to this, my brain hasn’t got appropriate disaster reaction transmitters.  I keep getting brain flashes of suicidal ideation, as this is how I’ve dealt with crises in the past (whilst this sounds flippant, if you read my blog posts from 2014/15, you’ll see this was no laughing matter). I can immediately have a word with myself now, and know that it’s just because I need to build new pathways. This will do that – eventually.

    If this crisis had landed a year ago, there is a strong possibility I wouldn’t be here. The reason I have come so far is not, contrary to what my close friends say, because I’m superwoman. It’s because of the people I have in my life right now.

    The mums on the school run who I’m now confident to speak to, all the people who I’ve met through my wonderful best friend, and in vast quantities my Autism Puzzles family. Thank you, each and every one of you. I may be facing homelessness due to the housing crisis, and landlord’s inability to open their minds to the possibility that people on benefits are capable of paying for and maintaining a property, but I’m definitely not facing it alone.


  • Why’s Matty doing that?

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    This is my son Matty, he has an Autism Spectrum Disorder (“ASD”). Looking at the photo, he looks like any typical nearly eight year old; this is because ASDs are invisible disabilities. As April is World Autism Awareness Month, I thought I’d share a snippet of  Matty’s life, along with some more general  information for those who wish to read it. A frequent question I’m asked by children is “Why is Matty doing that?” usually referring to flapping, talking to himself, or putting his hands over his ears, hopefully this post will help answer some of those questions.

     

    Nobody looks autistic, it’s a neurological disorder which affects all who have it in different ways. I’m lucky as my son is verbal (although his speech sounds immature, and his language development is behind for his age) and he’s relatively high functioning. Unfortunately, the media portray high functioning autistics as people who are just a bit quirky, geniuses in their own right who don’t seem to have many struggles. It is assumed that characters such as Sherlock Holmes, Dr Spencer Reid (Criminal Minds), Sheldon Cooper (Big Bang Theory), and Will Graham (Hannibal – TV series) have autism, although this has never been explicitly stated in any of the series. The combination of poor social skills, unawareness of how their actions affect others, and being utterly brilliant at what they do make every couch psychiatrist scream “Autism” or “Asperger’s”. These are, whether intentional or not, false portrayals of a very small group of people on the spectrum.

     

    My son has sensory processing disorder (“SPD”), a very common co-morbid condition with ASDs. He seeks proprioceptive input; he doesn’t have any awareness of where his body parts are in relation to the space around him. He also can’t feel his body parts unless he’s moving or touching them. He also has hypotonia and hypermobility which don’t help. This means he stims (self stimulates); his favourites being jumping and flapping; and he can’t stay still (at his most still he still constantly wiggles his toes). Stimming is a very common symptom of SPD and ASD alike, although not everyone with either of these conditions will have stims, and not all stims are the same. Some can be as subtle as gentle rocking, finger counting, and rubbing the thumb and forefinger together; others can be as noticeable as spinning in a circle, clapping hands together repetitively, and Matty’s jumping and flapping. It is important to remember that someone who stims cannot stop this behaviour, it happens for a reason. They either can’t help it, it’s a reflex in the same way breathing and blinking are, or it is behaviour to help them keep calm in an environment which is not comfortable for them. It can also be a way of demonstrating pleasure and excitement, in the same way a neuro-typical (“NT”) person would laugh, smile, or verbalise their happiness.

     

    Matty can be sensitive to noise (which is why he will almost certainly have his hood up, regardless of the weather, indoors and out), but not his own. He has no volume regulation, and constantly narrates what he’s doing (basically that inner monologue we all have, for Matty it’s not inner).  He also has echolalia and will repeat phrases he has heard in games, films and YouTube videos. This is, again, something which is common amongst verbal autistics, although will not  present in all cases. Some autistics who are classed as non-verbal will also speak using echolalia, but they have no functional language to engage in conversation or to verbalise their needs.

     

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    Matty struggles socially, he can’t read non-verbal communication (facial expressions, tone of voice, body language), he doesn’t know the “rules” of having a conversation and will interrupt, change the topic of conversation to what he’s interested in, walk away when you’re mid-sentence because as far as he was concerned, that was enough talking, he struggles with eye contact and will completely shut down if a social situation gets too much. Social impairment is a major diagnostic criteria for ASDs; if a person has any form of autism, they will definitely struggle socially. This can be masked very well by high functioning autistics, particularly females and in adulthood, but it doesn’t mean that they don’t struggle. Social interaction is hard work, autistics can appear aloof, uninterested in what is going on, overly intense in some situations, and sometimes rude. Please remember that it is not intentional. Where a NT person may easily be able to read someone’s facial expression and realise they’re either bored, annoyed, or want to have a turn to speak, a person with autism will either struggle, or be completely unable to do this. It is important to be patient when interacting with people on the spectrum, and to acknowledge that if they offend you, it will usually be unintentional (although I’m a firm believer in explaining to the autistic person in a way they would understand that they have upset someone, after all, it is only through education someone can learn).

     

    Matty, along with most people with an ASD, needs routines to be strict. He doesn’t cope well with change, and suffers from anxiety. It is important for all people who struggle with this to be made aware of any routine changes as soon as possible. A holiday must be planned well in advance, and the autistic person informed of where, when, how, and why they are going on a  regular basis. Matty’s first holiday (pre-diagnosis) was a complete disaster. We went to Bluestone in West Wales, which meant we didn’t even leave the country, yet he was a nightmare the whole time we were away, and had many “tantrums” during our stay. Matty’s first holiday post-diagnosis (which was also his first holiday abroad) was much more successful. We were able to talk through his anxieties, talk about aeroplanes, what sort of food he’d have, what he would do each day, who else was going, and other factors which may seem completely unimportant to your typical child. When Matty is preparing to change school year, he has more settling in sessions with his new teacher, and his SENCo helps him create a social story to read over in the summer holidays which has photos of his new classroom, teacher, teaching assistant, cloakroom peg, and details of what sort of things he’ll be learning that year. If Matty has a sensory overload: it’s too loud, too smelly, he’s had to sit still for too long; or if his routine is changed suddenly: roadworks causing a diversion from our usual route to places, plans have to be cancelled, or new plans have to be made; he has meltdowns which can last for a long time and leave him completely exhausted. While we have done a lot of work to prevent this from happening, and his meltdowns are reduced in number compared to pre-diagnosis, once he is in meltdown, it is very difficult to bring him out of it, and they can be both frightening, and (I’m ashamed to admit) when in public, embarrassing. When your tall, nearly eight year old is on the floor of a supermarket, screaming and crying because you said you were done, but suddenly realise you’ve run out of milk, I can say, with certainty, we as a family are judged. I feel an overwhelming urge to tell the rubberneckers that Matty is autistic, although it’s actually not any of  their business. Please keep in mind, that if you see a child behaving in such a way, the parent will be, in 99.9% of cases, doing what needs to be done to calm the situation down. I will start with deep pressure and talking to Matty, but often, the kindest and most useful thing I can do is just to be with him until it’s over, without, or with minimal, talking.

     

    While I discuss his diagnosis on a regular basis as I’m an advocate for autism awareness, Matty is far more than just his diagnosis. He is a child who is funny, loving, and extraordinarily  bright with a fantastic memory. He is kind, empathetic (where his condition enables him to be), and generous with his friends. He is my son, and I’m proud of who he is.


  • Home

    When I think about the mind, it reminds me of an old house, dark and decrepit. The paintwork on the façade is cracked, peeling, scorched by the sun, and battered by the winds of the past. It is uninviting, but somehow draws you in, like a moth to a flame.  You can’t help but walk up the splintered steps to explore the inside.

    The heavy wooden door is slightly ajar. You feel your heart quickening in your chest, the blood pounding in your ears like a beating drum. You struggle to catch your breath; you want to turn away and flee like so many others before you, but you know you must go on.

    The corridor is long, dark, and dusty; a path which hasn’t been walked for a long time. Your footsteps echo as you go forward, dust billows behind you, and cobwebs snatch at your face like ghostly fingers. You see movement ahead, you slow your pace in trepidation, yet you know you must continue.

    Two figures appear in the dark, shadowy and sinister. As you approach, you notice that one figure is cowering low to the floor, hands raised as a shield, to protect itself from the words spouting from the other. The figure doing the talking is tall, and menacing. It has no face, yet words keep coming from the place where its mouth should be. You hear it calling the quivering figure weak; telling it that it is worthless, stupid, and unloved. It spews out nothing but hatred, every vile insult sparks something inside you, and you break into a run determined to protect the whimpering figure on the floor.

    As you get closer, you hear more of the bile; you see clearly the figure on the floor. Realisation washes over you as you see that the frightened figure is yourself. You are naked, vulnerable, and uncomfortable. You hear what is being shouted by the taller figure, and realise it’s every worry, every self-doubting moment you have ever had. You stop, and realise the figure is the part of your brain which feeds all of your self-doubt, your fears, and your anxiety. You stare at the figure, and notice that as you do, it begins to become smaller. The realisation that it is a manifestation of your fears rather than an entity which can cause harm makes it seem less frightening.

    You stand and watch, listening to the figure and realising that although it may say things which are hurtful, you can choose how you react to them. You approach your trembling self, and hold out a hand. It places its hand into yours, and you stand united against the negative thoughts and feelings. Together you watch the figure twisted in its hatred, and choose to let the words wash over you and away. In the same way that no two drops of water are the same in a waterfall, no two thoughts are the same, and they will pass quickly. The figure continued to shrink, and as it did, the house began to fill with light. The corridor widened, and the cobwebs vanished. Warmth spreads throughout the house and you walk back towards the open front door. As you look back, you see yourself sat peacefully in the warm light, and you know you are free; you finally feel at home in your own mind.


  • You should love your hobbies.

    Why is it, people often won’t do things they love, instead using their spare time on things they’re good at?

    There seems to be a lot of pressure these days to be the best at everything. In the digital age where everything is shared, or sold on Etsy, life has become one big competition; it is almost like your best isn’t good enough if it isn’t “the best”.

    We teach our children that as long as they try their best, that’s all that matters. And for the most part, it’s true. We take into account their differing abilities; we cheer the losing primary school netball team on from the side lines, letting every child have a go in game and not just the top performers; we celebrate all achievements, no matter how big or small; and do everything we can to increase their confidence and enjoyment of an activity.

    This completely changes once you become an adult. It starts in the workplace, rather than “do your best and we will be happy” it’s “hit this target; if you don’t you will have a disciplinary, if you do you will just stay under the radar and be a forgotten statistic, if you exceed it by miles, only then will you be thanked and congratulated on doing a good job”. This attitude seeps out of the workplace into our team sports. No longer can you just join a football team if you enjoy a kick around on a Saturday morning, you have to try out and will only get a place if the coach thinks you’re good enough.

    People then start applying this logic to their hobbies, even if it prevents them from doing things they really love. Unless you can produce a cake which wouldn’t look out of place on the Great British Bake-off, you ignore the request for cakes for the school cake sale with the thought “oh, my cakes aren’t as good as Mrs Alpha Mum PTA; there’s no point in baking any to send in as mine won’t get sold”. It’s now not good enough to knit a blanket for your friend’s new baby, full of dropped stitches, wonky edges and tons of love. Unless you could sell the end product on Etsy, it stays as a well-intentioned thought rather than a reality. If you love playing computer games but don’t have the best hand eye coordination, you never join in on web based co-ops or play MMOs for fear of being called a “noob” and being repeatedly voted off the server (that totally didn’t happen to me last week…)

    People I know who love to draw, paint and write don’t, simply because they feel that they’re not good enough. I was one of those people. I love to draw, paint, colour in a colouring book, anything that’s related to art. I find it therapeutic and it’s technically something I could do almost anywhere. For most of my adult life, I simply haven’t done it because it’s not something I’m particularly good at. I didn’t think I could justify spending the money on art supplies as there is absolutely no way in hell I’d ever be able to sell any of the end products on Etsy. I can’t even draw from my imagination, everything I do is (badly) copied.

    Today, however, I changed my way of thinking and did some drawing. Okay, it wasn’t my idea, I was at a friend’s house and he got his supplies out and started drawing with my youngest son, I just jumped on the bandwagon. I did, however, really enjoy myself and definitely felt more relaxed in the process. I’m not even ashamed of the end products and am happily adding them to this post to show that it doesn’t matter if you’re not amazing at what you enjoy.

    Zombie

    I am going to continue to draw (badly) and will actually buy my own art supplies. I am also certainly going to continue to play computer games (not quite as badly), write my blog and may even start baking again. I’m never going to produce the best results, I’m not going to be the next big novelist, open a successful cupcake shop or have a job reviewing games for PC Gamer. But you know what? That’s okay. As long as I enjoy myself, it doesn’t matter if I’m not the best at something, it doesn’t even matter if I’m not particularly good at it. Isn’t it about time you started to do something you love? Most people get very little free time, use it wisely and remember, not everything in life is a competition. If it makes it easier, critique yourself as if you were eight years old again, give yourself some praise for turning up and taking part rather than berating yourself for not being the next Monet.

    Apple Banana


  • 2014 – The Summary

    How much can happen in a year?

    As it turns out, lots. Lots of things can happen in a year. 2014 has been… eventful and that’s putting it kindly. If I’m truly honest, it has been one of the hardest years of my life. It has also been a year of self-discovery, and I know I am exiting the year a stronger person than when I entered it, the journey however, has been a bitch of a ride.

    2014 marked the beginning of my life as a full time carer/stay at home mum. Since my eldest son was born, all I ever wanted was to be able to stay at home with him, to do all the school runs, to bake cakes, go to the park, play board games, have his friends over for dinner, become a member of the PTA, the list goes on. Unfortunately, reality doesn’t tend to match ideals. The sole reason I became a stay at home mum, was due to my eldest son requiring enough extra support, compared to other children his age, he qualified for DLA. My dreams of PTA meetings had turned into hospital appointments and SENCO meetings, trips to the park were few and far between, and during those trips I spent most of my time calling out to him to “stop licking the railings” or to “please come back, you’re too far ahead” and “put your bottom away, nobody wants to see that”. All pretty normal for a toddler, right? Except he isn’t a toddler, he was 6 in April of this year. He also has an Autism Spectrum Disorder diagnosis. This year I also got diagnosed with Coeliac Disease and my youngest son has issues with hypermobility, however he proved his physiotherapists wrong and started walking this year just before he turned two. Unfortunately his Geneticist found he has a heart murmur and has referred him to a cardiologist, we should know more about that in the New Year. Medically, this year has been an eye opener, at least we are better prepared for what the future may hold.

    The biggest shock to me was how much I missed working. I knew I liked my job and I also knew I was good at it, however I never thought that being employed was such an important part of my identity. I have recently started doing some freelance work as I needed to do something to protect my mental health as I had felt like a drain on society since I stopped working full time and felt like I had lost a big part of who I was. I don’t, however, make money from it.

    I also realised early in the year that throughout my adult life, I had changed myself to be the person I thought everyone else wanted me to be and I knew I had to make big changes in order to start bringing myself out of the depressive cycle I had been in since I was a teenager.

    The first step was being completely honest with my husband about how I felt, including informing him I didn’t think our relationship was going to work. I’m not going to dedicate much time in this post to the separation, however I am grateful that we have come out of the other side amicably, I would consider him a friend. There were very low points during the transitional period, particularly when I felt like an awful person for not wanting to be with him when he still wanted to be with me, however he has met someone new and I wish them all the happiness in the world. He deserves to be happy, as do I.

    At around the same time, I spoke to my mum about my childhood. I feel we now have a much more open relationship than we ever had in the past, although I still very much revert back to a child-like state around her. I also went back to my GP to talk about how low I was feeling, they increased my dose of antidepressants and referred me to Primary Mental Health, who did precisely nothing.

    During the separation and the period of talking about the past for the first time in many years, I started self-harming for the first time since in many years. I would cut or burn myself on my arms as a way to release some of the pent up emotions, and to also make sure I could still feel something other than sad and despondent. At this point, I lost many of my friends and family members who couldn’t handle me at that time. While I appreciate everyone has their breaking point, these were friends of over a decade, “best friends”, the godparents of my children, the bridesmaids from my wedding (okay, I know that the marriage didn’t work out, but you understand how close we were). There are a list of people who this time last year I would see nearly every day, who have completely disappeared from my life. I have been blocked on social media, texts are not answered. Tonight, at midnight (or there about) will potentially be the last time I attempt to contact them. I will wish them and their families a happy and healthy new year, and if I still don’t get a response, I will give up and stop allowing myself to ruminate about what went wrong and get on with my life. (Although I also know that’s easier said than done.)

    Having said that, I have also met many wonderful people this year all thanks to me meeting up with the most amazing person in the world. I knew him from school, life happened and we didn’t see each other again until 2013 at a mutual friend’s wedding. We reconnected on social media, although this year, in around March, we re-met for coffee and quickly became best friends. He has saved my life on more than one occasion and has been, and will continue to be, my most favourite person on the planet. Thanks to him I have seen live bands performing for the first time since I was in high school, I discovered Aeropress coffee and started to have private counselling for my depression.

    As he is so awesome, he also knows a lot of awesome people. Throughout the year, these people have transitioned from being acquaintances through my best friend, to being my friends. They have welcomed me into their lives with open arms, are funny, kind, honest and more supportive than people I have known for years. This year would have been unbearable if I didn’t know them. Unfortunately, two of the friends I met through my best friend I have also lost within the year, I obviously haven’t quite cracked this “people liking me for who I am” malarkey just yet, however I’m sure with practice I’ll get better at it. I’m not saying I expect people to never call me out on my wrongdoings, in fact, please do call me out on them so I can learn from my mistakes and grow as a person, however the two people in question did the same disappearing act my long-time friends did so nothing can be learned, nothing can be changed, I am in the dark with only my rumination to keep me company.

    Due to the separation, my ex and I sold our marital home and I moved to another area of Cardiff to live on my own (with the children) for the first time ever. While I still love having company, I have realised this year that I am more than capable of being on my own, I don’t need people I want people. They are two completely different things and I’m glad I can now make that distinction. I will admit, however, this is a very recent realisation. I struggled greatly with the transition to single life, missing the knowledge that there was someone else in the house. It was due to missing a presence that I got my cat. He is both lovely and evil, he has a Jekyll and Hyde personality and I wouldn’t trade him for the world.

    I started to fill my evenings with hobbies, mostly reclaimed from my youth. I started playing computer games again. I soon realised that gone were the days of DOS and Duke Nukem 3D, no longer was Doom (the original) an option and Tomb Raider had received a major facelift! With a lot of help from my best friend (and parts from my ex), I built my gaming rig and installed Steam, which is both one of the best and worst things I’ve done this year. I love that I’m playing games again, that I can get lost in another world (sometimes for too long, thank you Skyrim), however the Steam sales are dangerous! I now have more games than I know what to do with and need to stop buying until I have played them all.

    I have read more books this year than in the past 10 years combined (this is possibly an exaggeration, however I know I have read a lot). I do, however, find it strange that I did as for many periods of the year I simply didn’t have the concentration span to read more than four pages at a time. I didn’t give up though and have read some absolutely fantastic books as a result. It was thanks to two of these books that two big events happened; I started practicing Mindfulness meditation (although I will admit I’m not very good at keeping up the momentum) and, after going on a dedicated weekend retreat, I had my first fully lucid dream. For anyone who hasn’t tried to dream lucidly, I would recommend Charlie Morley’s book “Dreams of Awakening” and implore you to give it a go. It’s absolutely fantastic and a wonderful way of confronting the deepest darkest areas of your subconscious.

    This year, I also hit one of my lowest points and took an overdose of sleeping tablets. I’m still not entirely sure what my thought process was at the time, all I knew was I was really sad, and desperately wanted to go to sleep. I had intended on taking the correct dose and going to bed, I ended up taking two diazepam and eight over the counter sleeping tablets. I knew that it wasn’t a lethal dose, and that wasn’t my intention in the first place, but still I confessed what I had done to a friend. She called for an ambulance and I was taken for an overnight stay on the poisons unit. Ironically, I didn’t really sleep that night. I did feel drowsy, particularly in the ambulance, but the inability to fall asleep when I’m really sad still won. I knew I couldn’t do anything like this again and ensured I told my counsellor and my GP what had happened. Ironically, even though the psychiatrist I saw in the hospital said it was likely due to me being overtired, overwhelmed and in need of support, that support (from external agencies and/or people who could really help out with having the children more) never materialised. I am very lucky to have friends who help support me emotionally and, when they can, practically.

    2014 was also the year in which my faithful car finally died a death. Thankfully, as all the debt accumulated while I was with my ex had been paid using the house sale proceeds, I was in a position to buy a new one! I’ve wanted a new car for years but was always too scared to buy one. I thought I needed to justify why I wanted one, I felt I had to seek permission from other people, particularly my parents to do it. I have since learned that I don’t need other people’s permission to buy things, as long as I have the money, I can spend it how I choose.

    So, that was my year. It’s been very hard, stressful and eye-opening. The people I have in my life at the end of 2014 saved me this year, one way or another, I owe a lot to them. Thank you from the bottom of my heart for all your support, kindness and time this year, I love each and every one of you.


  • Conveyance of emotion through song

    I have a broad taste in music. I am mainly into “alternative” or “rock” music, however I also love classical music, songs from musicals and some pop/dance music. It all depends on how the music makes me feel.

     

    Samuel Barber’s Adagio for Strings is an example of a classical track which electrifies my senses. I get shivers down my spine and I feel like I’m transported to another dimension, where raw emotions are highlighted and time stands still. https://www.youtube.com/watch?v=1dPDO3Tfab0

    I also can’t help loving the William Orbit remix of the same track. Timed right, it would make the perfect New Year’s countdown song, so the track is at 1:34 at the stroke of midnight. As this is a trance mix it doesn’t stir up my emotions in the same way as the original but it still makes me want to stop what I’m doing and just appreciate the sound. https://www.youtube.com/watch?v=VIbIHxKh9bk

     

    In my opinion, more important than the music are the lyrics to songs. This is, I think, the reason my taste in music is so broad. It seems there is a track out there to fit every emotion, thought and feeling you may have. I’ve recently been having a pretty horrible time of depression, relationships breaking down, people talking shit about me and some dark thoughts of suicide and self-harm. Throughout this, music, songs really, have been a constant companion, truly understanding how I’m feeling at that present moment.

     

    Some people may say it’s not healthy to listen to “depressing” music when you’re depressed. Before I list the tracks which have stood out for me and the reasons they have, I just wanted to point out that whether I listened to the music or not, my thoughts and feelings would be the same. There would just be more silence.

     

    When I have been feeling at my most low and helpless, there are three songs which are my “go to” tracks as they sum up exactly how I’m feeling:

     

    A Drowning by How to Destroy Angels: https://www.youtube.com/watch?v=k_GqVFa5GBA

    The chorus, “Please, anyone, I don’t think I can save myself, I’m drowning here…” really speaks to me. It is the cry for help that I so desperately want to shout out. I can be driving, tears streaming down my face and I will put this track on, hoping, wishing someone would realise I am actually asking, “Please, anyone, I need help”. Obviously no-one does, nor do I really expect them to.

     

    How Long by How to Destroy Angels: https://www.youtube.com/watch?v=1sUTVT7HzSg

    Again, it’s the chorus which speaks to me, “How long can we keep holding on?” It’s a question I ask myself on an all too regular occasion. There are days I only “hold on” because I am a mother to two small boys who are my world. I’m currently not the best mother in the world and it’s something which both upsets and frustrates me on a daily basis. I get asked each time I see my GP if the boys are still enough to prevent myself from self-harming or having a timeline, the only thing missing from my suicide plan. The last time I went I had to be honest and say that I didn’t know. What I do know is that with my continued counselling sessions, the support from some amazing friends and the love from my sons, I want desperately to get well and to never have these thoughts again.

     

    The third song, keeping it Trent Reznor, is Hurt by Nine Inch Nails: https://www.youtube.com/watch?v=htmKZKR7oyc

     

    First the obvious, “I hurt myself today, to see if I still feel…” basically sums up why many people self-harm. One of the most surprising and horrible elements of depression is how often you just feel numb and you just want to feel something. When you know you need to cry but the tears just don’t come and you sit, staring blankly at the wall, brain full of fog and thoughts of dying. For me, the more poignant line is “Everyone I know goes away in the end…” This has certainly been true for a lot of people who used to be in my life. Not just acquaintances but family, friends with whom I had been very close for over a decade have left and removed every trace of my existence from their lives. It hurts because I can’t understand what I have done wrong other than separate from my husband and have depression, however, in their eyes, I must have done something. It must be me, I am very good at losing friends; I don’t do so well at making them.

     

    When I am not wallowing in my sadness and I think of the people who have, for want of a better phrase, deserted me at my most vulnerable, I occasionally feel another unwelcome emotion: anger. The songs I listen to then are at the complete opposite end of the musical spectrum, although they are still “alternative” tracks. The track which immediately springs to mind is Go to Hell for Heaven’s Sake by Bring Me the Horizon:  https://www.youtube.com/watch?v=G5BbCiWiNZY

    I would like to say there is a particular line which stands out to me, however, when I listen to this song I imagine the whole thing being broadcast directly from my brain to those who have deserted me. Whilst I realise it’s not healthy to get angry at them, it is a preferable state to the “why did they leave me, I feel so alone” thoughts and the sadness which accompanies them. I would love to have the courage to send a message containing the bridge lyrics as it sums up why so many people have done what they have: “You’re not a shepherd, you’re just a sheep, a combined effort of everyone you meet. You’re all flesh, with no bone, feed them to the sharks and throw them to the wolves…”

     

    There are, of course, the good days where I feel more positive, where I feel proud of the progress I’ve made and how independent I have become in a short space of time. My favourite song to sum this up is Make Yourself by Incubus: https://www.youtube.com/watch?v=BShyYZQEmBk

    The chorus lyrics sum up why this is “You should make amends with you, if only for better health, but if you really want to live, why not try and make yourself…” Basically, although it’s easier said than done, I know I need to make myself do things that make me happy. Stop trying to please everyone else and stop constantly worrying about what people think. When I listen to this track, I feel like I can do it, I CAN be that person who makes themselves live the life THEY want not what everyone else wants or expects them to do. Unfortunately, the feeling lasts for precisely 3:04.

     

    Whilst you may not agree or even like my choices, I am sure every person who reads this can agree that there are song lyrics which perfectly fit a situation or emotion they have found themselves in. It’s what speaks to you, what makes a song stand out from the rest, becomes embedded in your memory and moves your heart and mind in a way no other song can. I look forward to the day when I can write a follow up post, one which contains the tracks which highlight happiness and contentment in my life.


  • HUMANS

    “Modern humans (Homo sapiens or Homo sapiens sapiens) are the only extant members of the hominin clade, a branch of great apes characterized by erect posture and bipedal locomotion; manual dexterity and increased tool use; and a general trend toward larger, more complex brains and societies.” Quote from Wikipedia

    The above is a scientifically accurate answer to the question: what is a human? It isn’t, however, the answer to what we really want to know. The real question is, why do humans spend so much of their time trying to destroy other humans?

    Throughout history, there hasn’t been a period of time during which humans have not been at war with other humans. There are currently around 11 wars in progress in which there are over 1000 deaths per year together with a further 33 conflicts in which there has been a death toll of at least 25 with one of those deaths being within the past year (source)

    There seems to be four main causes of war: Religion; Territory; Oppression and Self Defence. Take any one of these reasons, add in some cleverly crafted propaganda and biased news reports and you have it, war.

    Even if you move away from the extremes of war, you find conflict almost everywhere you look. Someone is always annoyed about something; person X did something to person Y and now they’re not talking; people cannot learn to “agree to disagree”. There are even people who seem to thrive so wholly on conflict, if there isn’t any drama in their lives they will create it. It is this conflict we each have an ability to change.

    Children learn about many things in school, algebra, statistics, how to read a book in such minute detail it’s no longer enjoyable and other such skills which, unless you want to be in a particular job such as an astrophysicist, don’t really have any application in the “real world”. I think a better society would be created if children were taught the importance of communication; humility; tolerance; compassion. Instead of being taught how to debate, teach conflict resolution. Although children do work things out for themselves eventually, a vast proportion of adults still deal with conflict like children. They take the easy option, more often than not delivering bad news or unkind words via text message or via social media rather than talking with the person face to face. People bitch seemingly ALL THE TIME about someone or something but have no intention of actually doing anything about it. If the foundations of how to properly deal with this were taught at a young age, most conflicts could get resolved in a relatively peaceful manner.

    I am sure everyone can think of at least one example of a conflict in their lives which, instead of being resolved, has spiralled out of control and has reached the point of no return. Although lives are not lost in the same sense as they are during war, lives can be, albeit temporarily, destroyed. Unresolved conflict leads to thinking, which leads to rumination: an open door to depression. Rumination is something I am currently guilty of. I have lost a lot of friends and some family members recently due to people being unwilling to discuss or attempt to resolve conflict. It seems they would rather ignore what has happened, pretend I never existed and completely sever contact. Whist I appreciate that a face to face discussion may not “fix” the issues, at least I would know that we had tried. That everyone knew exactly why things are the way they are and everyone had an opportunity to explain their “side” of the story. Instead, I am ruminating, having these imaginary conversations in my head, trying to make sense of what has happened and never getting the answers. It becomes easy to wholly blame myself even though I know rationally that isn’t the case and the downward spiral resumes.

    I may just be dreaming up an ideal world, but I feel that if we as a species learned how to deal with our personal conflicts rationally rather than resorting to childish ways, this would branch out into other areas. If tolerance was taught from a young age, the differences in humanity would be accepted more readily and in turn there would, hopefully, be fewer wars.


  • Autism

    Autism Spectrum Disorders (“ASDs”) are something I have first hand experience of as my eldest son has an Aspergers Syndrome diagnosis. One thing I have learned while travelling the path of endless appointments, therapies and paediatrician appointments is that ASDs seem to have an inbuilt magnet for bullshit.

    Everyone has their own, often outdated and uneducated, view on what ASDs are; how people with them think and behave and what causes a person to have ASD in the first place. These range from the discredited “research” by Dr Andrew Wakefield in which he claimed that the MMR vaccination caused Autism to the equally uneducated “there is no such thing as Autism, it’s all bad parenting”.

    People are still avoiding vaccinating their children from diseases which kill thanks to Dr Wakefield and as such there has been a significant rise in the number of reported measles cases as heard immunity just doesn’t work if those who are able to be vaccinated aren’t (further information regarding the breakout). Although there have been numerous reports debunking the link between the MMR and Autism (see this one from Harvard Medical School as an example), parents are still so concerned due to the prevalence of Autism myths that they simply “won’t take the risk”.

    Even more ridiculous than the vaccination myth is the one created by PETA that consumption of dairy products causes Autism (link here). Between the two reports it is suggested that if you vaccinate your child while giving them formula (which is derived from cow’s milk), your child has no chance.

    The thing that people seem to be misunderstanding through reading the research (always done against very small groups of children) is that correlation definitely implies causation. If that were true, you could say for certainty that water kills people as 100% of people who drink water will die.

    mmr

    Image from http://condoroptions.com/

    In truth, there doesn’t seem to be a single direct cause of ASDs. Rather than the public looking for these reasons in order to avoid them (as realistically it’s likely to be a biological factor in the same way that chromosomal abnormalities can cause Downs Syndrome and DiGeorge Syndrome), they should be educating themselves as to what ASDs actually are.

    If you speak to anyone who has never met someone with an ASD, the first person they will picture is Dustin Hoffman as Rainman. They will say things like “your son must be amazing at maths” (actually he is, but that’s beside the point) and “oh, so he hates to be touched then?” (when in truth, his sensory issues mean he seeks proprioception so absolutely loves really tight hugs). Worse still are the people who once knew someone whose Auntie’s cat’s best friend’s hamster owner had Autism and they did <insert vague stereotype> and your son doesn’t so he can’t have Autism.

     

    It also seems that even the “experts” can’t agree on what makes someone fit into a particular category of ASD. There are numerous arguments as to whether Aspergers Syndrome is just “Mild Autism” (it’s not), whether newly diagnosed people should be given a subcategory at all or if everyone should be lumped together into one big ASD pile.

     

    What I believe is that people should realise that if they know one person with an ASD, they know ONE PERSON with an ASD. Just like with neuro-typical people, everyone on the spectrum is an individual. They have unique likes, thoughts, feelings and behaviours. All have difficulties with communication and social skills, however the severities and manifestations of those difficulties will be just as individual as the person. My son is fantastic with his select friends, if you saw him playing with them, other than a bit of stimming and the fact he can be difficult to understand when he talks if you don’t know him, you probably wouldn’t think he was any different to a typical six year old. Put him in an unfamiliar environment with people he doesn’t know, particularly other children, and he will react in one of two ways. He will have a meltdown (or as helpful people tell me, a temper tantrum that a good smack would sort out) or he will withdraw into himself, either by staying close to me and hiding his face or finding a corner to lie down in.

     

    I think it’s important to know that the ‘S’ in ASD is really the most important letter. It’s a spectrum. You will have people who have issues such as communication on the higher functioning end of the spectrum, yet may have sensory issues on the low end of the spectrum and just can’t tolerate wearing certain clothes or eating certain foods. Just because someone is classed as having Aspergers or High Functioning Autism it doesn’t mean they don’t have elements of that which are genuinely disabling (my son is six and still wets and soils himself on a regular basis and cannot wipe his own bottom properly) and conversely, someone who has Classical Autism and may not be able to speak should not be considered to be any less intelligent than someone who communicates in a typical manner.

     

    Regardless of what causes it, ASD is definitely real, it has nothing to do with bad parenting, it’s not something which can be taken away, it is a lifelong developmental disability. It is also an invisible disability, please don’t assume that the child you are seeing having a toddler style meltdown in the middle of Tesco when they clearly look about 8 or 9 is just naughty, no one “looks” Autistic. However, with the right therapies, early intervention and patience from everyone involved in an Autistic person’s life be that their parents, teachers or the person sat near them on the train while they recite repeatedly the names of the train stations on that particular line in the order of which the train will stop (a particular favourite of my son’s), improvements can be made to social skills, communication and sensory issues so that the person can function to the best of their ability.

     

    For further reading regarding ASDs please click this link: http://www.autism.org.uk/

     

     

     


  • Conflict

    Conflict is something I have always run away from in the past. It frightens me, my imagination runs wild and conjures up endless possible outcomes from the downright ridiculous (the world will actually explode) to the not totally irrational, but in most cases equally ridiculous, the person I have the conflict with will physically hit me or scream at me if I say what’s on my mind. As such, I have spent the majority of my life quietly agreeing with the people closest to me, trying to avoid arguments.

    This will come as a surprise to most people who know me. I am very vocal about a lot of important topics and will argue points regarding religion, feminism, equal rights and politics until I’m blue in the face. I remember offending many of my (possibly ex) friends as I told them they were absurd for not agreeing with the allowance of female fire-fighters. They posed the question: “Who would you rather rescue you, a man or a woman?” My response was reasonable, whoever had passed their training and was more qualified for the job. This is one of many examples of how confident and opinionated I make myself out to be, the mask I hide behind.

    Matters of relevance and importance to my personal life, those are the conflicts I hide hid from. Relationship conflicts, what money can be spent on, what to eat for dinner, who stays at home with the children and who goes to work, going out. Things which seem completely insignificant to most, I would be genuinely terrified of speaking up about. I would bury my feelings and oppositions to decisions made, all the while becoming resentful of the other party and destroying my sense of self worth and confidence.

    Change occurred when I substituted the word “conflict” for “communication”. Communication is key to relationships, good and bad. Unfortunately, if you do not have a relationship based on honest and open communication from the start, by the time you realise its importance it’s often too late to save. There are too many resentments, too many insecurities and a major imbalance in the dynamics of the relationship. In the case of my relationship with my husband (from whom I am currently separated), we lacked basic communication skills and as mentioned above, I became completely resentful of him. We are now in a position where he wants to reconcile and make things work and I am struggling to get past every thought, feeling and action which negatively impacted on my mental health during our marriage. He is aware of this and I frequently talk to him and explain I am not in the same place as him regarding our relationship, however this is not something which comes naturally to me. Inside I am screaming “run away! Tell him a comforting lie rather than the inconvenient truth!” I’m sure this wouldn’t be the case if we had based our relationship on communication and (to steal an idea from a very good friend) held weekly relationship meetings to discuss any issues, resolve them and move forward.

    I have made a promise to myself that I will never again act on my fear of speaking out and saying how I feel. I can’t promise myself I won’t be afraid in the first place, I am sure that will come with time. I am slowly learning that another person’s happiness is not more deserved or due than my own and that hiding from external conflict only creates inner turmoil, something which is much worse.