#TakeOffTheMask: Stimming

I’m a stimmer. I stim to calm and to self-regulate. It is (and always has been) necessary for my mental health well-being.

One of my favourite-ist ways to calm myself as a child was to twirl myself around until the ‘butterflies dance’. Why? Because it blocked out all the shit stuff. While I was spinning, I couldn’t think of anything else except the fluttering sensations in my body.

Those few minutes allowed my brain to reset itself.

I didn’t know that I was autistic.

I didn’t know that I was stimming.

My ‘stimbox’ includes rocking, spinning and stroking tactile materials. It also includes me picking at my skin until I bleed. Then, come the scabaroonies which I will pick off time and time again. Scabs are the gift that keeps on giving, right?

If you happen to see me manically ripping the skin off my lips, I’m probably mega-anxious.

If you see me rocking gently, I could be happy, excited or apprehensive.

If I’m rocking like a psycho, it’s best to assume that I’m experiencing brain-snap, so I’d back away s-l-o-w-l-y.

When I stim, my brain overrides some of the stimulus that makes me anxious.

When I suppress my stims, stimulus (and anxiety) becomes amplified.

Lets get one thing clear: EVERYBODY STIMS. If you’ve ever chewed your nails, hair, pen-top, or shoved your finger up your nose and left it there longer than is necessary – you’ve stimmed. The difference is that non-autistic people’s stimming is more socially acceptable. Nobody gives a toss if someone bites their nails, right? Hand-flapping? Tosses are very much given and people turn into judgemental @rse-holes!

I used to be semi-successful at suppressing my stims. Just as I was semi-succesful at camouflaging myself, but since I burned out, I’m not so good at it because I don’t have the energy to suppress anymore. That and I can’t take medication for my anxiety disorder because I have Fibromyalgia – a condition which can affect how your body reacts to medication.

Stimming keeps me sane – literally.

I stimmed recently at my son’s school presentation day. It was necessary because the stimulus levels were THROUGH THE ROOF! It was a sensory nightmare – which is ironic considering the event was for an ASD specialist school.

I rocked gently, back and forth or from side to side. It calmed me enough for me to be able to remain in my seat. Plus, I fixed a mini-fan to my phone, which went down quite well with the lady who was sat next to me. However, the room was full of autistic students and their parents – some of which will have been autistic too, so I doubt that I stood out at all, but even if I did, I doubt that any shits would have been given.

When you mask, you suppress or adapt your stims. On top of having to think about what to say and when to say it, you have to suppress the urge to stim naturally. Maybe that will give you some indication of how social interaction can be so exhausting for autistic people?

With the controversial ABA approach, stims are literally shouted ‘out’ of autistic children.

‘But it works! Little Jimmy no longer flaps his hands!’

It works for you, but little Jimmy has turned into a robot. He’s been trained to obey.

You don’t ‘cure autism’ – you suppress an autistic person’s need to be themselves which could potentially result in mental health disorders.

“We’re not trying to deny kids the right to be who they are,” Dr John McEachin, co-director of the Autism Partnership, an ABA service provider,

Denying autistic kids the right to be who they are is EXACTLY what you are doing, mush!

Often, autistic people are unable to communicate verbally how they are feeling and parents/carers are too focused on trying to eradicate their stims to understand that stimming gives a clue as to how a person is feeling/coping in a situation. A change in stimming frequency (or intensity) might indicate that a person’s anxiety levels are rising and it would be wise to remove them from the situation. Understanding the role of stimming could help to prevent a full-blown meltdowns and improve an autistic person’s overall well-being.

What would people rather see. A child flapping his/her hands or a child running out into the path of a car because their anxiety has hit the danger zone?

Your homework for this week is to go out into the community and observe people stimming. Foot-tapping. Finger drumming. Doodling. Stroking hair. All self-stimulatory behaviour, but it’s only autistic people who get called out on stimming. The problem is that our stims are generally more visible and it makes people feel uncomfortable and we can’t have that, can we?

Some stims are simply not acceptable in public and in those cases it’s necessary to encourage more appropriate ones. For instance, some people firk with their crotch area when anxious. Nobody wants to see people firking around in their crotch areas unless it’s by mutual agreement, you get me?

Other stims are harmful, as with head-banging and other self-harming behaviours. To understand this behaviour, you need to know that when a person self-harms, it’s because their anxiety is overwhelming them to the point of requiring pain to block things out. I’ve never self-harmed in this way, but I’ve seen it many times and I understand that it’s a total loss of control due to severe anxiety. If it makes you, the onlooker, uncomfortable to see this. Can you even imagine what the person who is in pain feels like?

“Stimming is rarely dangerous. It can, however, be embarrassing for parents and siblings, disconcerting for teachers, or off-putting for potential friends and co-workers.” (somewhere on the internet, but I’ve closed the tab on the page and cba to trawl through my history)

I’d argue that stimming can be dangerous. Banging one’s head against a brick wall isn’t exactly soft-play, is it?

As for the second sentence in this quote..

This is the problem.

We make ourselves mentally ill so we don’t embarrass our families or make our teachers, peers and co-workers feel uncomfortable.

The worst it’s going to get for these people is to feel uncomfortable?

The worst it’s going to get for autistic people who suppress their stims is to be mentally ill.

Actually, worse case is premature death.

Instead of trying to force autistic people to conform to the detriment of their health, how about society adopts a more tolerant attitude to stimming?

OOH LOOK! A FLYING PIG!

 

Reasons I Hate Summer: Flies

Flies are evil b@st@rds. They are evil enough when there isn’t a heat wave, but extreme heat brings on a whole new level of evilness, no?

Bins stink. It’s part of being a bin, but the heat is making the bins extra-stinky and it’s attracting flies by the trillions. This wouldn’t be as much of a problem if my bins were at the end of a very long garden, but I live in a terraced house with a very small back-yard so my bins are well within whiffing distance – as are everybody else’s.

At this time of year there is always the danger of maggot infestations. Makes your skin crawl doesn’t it? Take it from one who knows: when you’ve battled the maggot-massive, you NEVER want to do it again!

Plus, it puts you off eating boiled rice. For ever.

You get me?

The fly is Ninja fast. You’ve opened and closed your bin lid in record time, but there’s always one who’s the Usian Bolt of the fly world. It’s flown in before you know it and if it’s a female, she’ll dump around 75-100 eggs onto the bags of rotting food. The next day, you wander out in your slippers with a bag full of potato peelings and you see that some tit has thrown loose rice in your bin. This isn’t your doing. You don’t throw food in the bin like her up the road. You’re posherer. You’re just about to throw a strop when you notice that the rice is ALIVE.

You’re torn between wanting to scream in horror and not wanting to draw attention to your BIN OF SHAME because having maggots is like having nits, as in, it can happen to anybody, but nobody wants to admit to it, right? Luckily for me, I’ve got a massive manhole. NOT a euphemism! I’m referring to the manhole in my back-yard which is indeed large enough to fit a man in should I ever need to conceal a body!

I am joking, of course.

Or am I?

Moving on..

Got a lil maggot problem? Chillax! (are people still saying that?) I have tips!

The Maggot Slaying Kit

  • A pair of Marigolds
  • Hot water
  • A massive bottle of industrial strength bleach
  • A brush that you’ll never want to use again
  • A bag to retch into

Don’t make the rookie mistake I did during the Great Maggot Infestation of 2015. I just hosed them down the drain. I didn’t kill them, innit? So some of them crawled up through the gaps in the flagstones and by ‘some’ I mean close on a hundred – all wriggling across my patio..

Maggots, EVERYWHERE!

For the Great Maggot Infestation of 2016, I was better prepared. I par-boiled the effers in the bin with a few shots of Domestos, then I swilled em down the drain.

Want to learn more about flies?

You know you do!

Fly Facts

1. Flies regurgitate digestive juices onto food so they can eat it. So if a fly lands on your quiche, it’s probably best to bin it. *boaks*

2. Rumour has it that flies do a poo EVERY time they land. (I’ll leave THAT one with you)

3. Flies are disease ridden arse-holes. Salmonella, E.coli. You name it, they spread it. For this reason, you should never leave food out uncovered. Not unless you want to defecate yourself dry?

4. Flies can walk upside down – coz they freakeh!

5. Flies have 360 degree vision (much like my mother) so they can see behind them. This would explain why the arseholes fly off whenever I creep up on them with a can of Raid.

6. Flies live for about 30 days, though their lifespans are shortened dramatically if they fly into my house.

7. Flies can lay up to 500 eggs in their lifetime – most of them in my bin.

8. Flies are agile and fast. That’s why you can drive yourself demented trying to swat the motherfunglers with a tea-towel.

9. Flies lay their eggs on rotting food and poo. Flies round shit, right? This is so that their offspring have something yummy to munch on when they hatch.

10. BRB – Gone to vomit.

Yo. Humanz. Am gonna crap on your Quiche!

So you see, there is much to despise about flies. Those buztards are bad news. That said, I do try to give them a fighting chance. I will open a window or a door, but if they don’t take the hint they get taken down with a tea-towel or a blast (or three) of Raid.

Meanwhile, here’s the question you’ve always wanted to know the answer to.

Why do flies do circles under your lampshade?

The flies patrol well-defined airspaces underneath landmarks like lampshades. … Male flies approach a landmark from below and, in the absence of other flies, settle to patrol an airspace close to the landmark. A second male approaching the same landmark chases, or is chased away by, the patrolling fly when it comes too close and may eventually settle to patrol 10–30 cm below the airspace occupied by the first fly. … The position of male patrolling stations relative to the landmark suggests that females might arrive at landmarks from the side (and not from below, as males do), thus crossing the dorsal visual field of patrolling males.

Source: Jochen Zeil. The territorial flight of male houseflies (Fannia canicularis L.) Behavioral Ecology and Sociobiology. August 1986, Volume 19, Issue 3, pp 213-219

In simple terms, it’s blokes fighting over girls up town on a Saturday night, innit?

Fly Porn.

But enough of fly mating rituals. Back to fly annihilation, yes?

Prevention is key to keep maggots at bay, so here are some tips.

Fly Control Tips

The first step in fly control is exclusion and sanitation. If your house is a massive bin, and you like to have your windows open – YOU’RE GOING TO ATTRACT FLIES! However, even if you are shit-hot with sanitation and you’d rather drown in a pool of your own sweat than open a window, you will still get the odd fly who fancies its chances, so here’s what you can do.

  1. If you do find a fly in the house, try to entice it out of the window or door. Life is life, right?
  2. Failing the humane approach, confuse the shit out of it by using two rolled up newspapers instead of one.
  3. If that doesn’t work, give it a murderous blast of Raid.

Now, I am so fly-aware, those arsewipes don’t have time to shit, let alone reproduce!

I take no pleasure from being the fly-finder general. I think it’s sad to watch any living thing die, but we have to remember that flies are not cutsie kittens. Or fluffy wuffy gerbils. They are nefarious spreaders of disease. They will crap on your food and make the world fall out of your arse. Or they will drive you to the brink of insanity with their incessant BUZZZZZZZZZZZZZZZZZZZZZZZZZING. Plus they really know how to take the piss when it comes to picnics and BBQs. You get me?

Roll on Autumn, I say.

 

#Take The Mask Off: What It’s Like To Wear The Mask

I’m an actress – acting is what I do. It’s what I’ve always done, but it’s not a profession or even a hobby. It’s survival.

I can pin-point the day that I realised that I was different. It was my first day at school. I was five years old. Up to then, I’d lived in my own world with occasional visits to this one.

I remember that I didn’t like this world very much.

I remember strangers talking to me.

I remember strange voices saying, ‘Aren’t you speaking to me?’

I remember voices asking if I was shy.

I didn’t want to talk to them.

I didn’t want them to talk to me.

It wasn’t shyness. It was selective muteness. That’s what happens when the world gets too much. I shut down. I stop talking. I become mute. It’s my safety valve. Without this ability to shut off, I’d totally (and regularly) lose my shit.

I started school in 1975 and the other children treated me differently from the onset. My first day was shit and it set the tone for the next ten years. Teachers told me off or ignored me. Either way, they didn’t understand me. I was bullied, as so many autistic kids are. Only I didn’t know that I was autistic. I just knew that I wasn’t like everybody else. Eventually I understood that I had to interact with people in order to fit in. I had to be more like them and less like me.

That’s when I learned how to perform.

So my life has been one big performance.

I’ve taken inspiration from many people. Some female, some male. All researched via TV, books or people I’ve come into contact with. I copied their voices, their mannerisms, their style (where sensory issues allowed) – so much so, that I lost my own identity.

I forgot who I was.

Was I an alien? Was that why I found it so hard to fit in?

Had I actually been birthed by a human being?

Or had I somehow landed on the wrong planet?

Performing. Chamoflaging. Masking. Whatever you call it, it means the same thing – NOT BEING YOU!

As the years have gone by, I’ve tried my hardest to be like everybody else, except that masking came at a huge personal cost.

One example of how I mask is with eye-contact.

I struggle with eye-contact, though on a good day, you probably wouldn’t guess.

I don’t like looking into most people’s eyes and I don’t like most people looking into mine. It’s an incredibly sensory experience for me – one which overwhelms and makes me feel vulnerable. Like they can read my crazy thoughts? Or I’m standing in my bra and pants. Either way, it’s not good. Then, in my mid-twenties I taught myself to look just above someone’s eye. I’d read it in a book somewhere. It helped, but the effort comes in remembering where to look and when it’s appropriate to look away. It’s in trying to take in what someone is saying while your concentration is elsewhere. There is this inner monologue going on reminding me what to do and when. It’s not natural, therefore it’s not effortless and the more anxious I am, the worse my eye-contact gets. When I’m really anxious, my eye-tic kicks in so people think I’m winking at them. *sigh*

I’ve fought against the mental and physical exhaustion that comes with trying to be something I’m not. Diagnosis helped me to understand who I am and why I experience the world differently and it took some of the pressure off. However, the diagnosis coincided with a nervous breakdown and though I wouldn’t wish one on anybody, it couldn’t have been more timely because I was unable to mask during my assessment. What they got was the real me because I had no energy to pretend otherwise.

Burnout is something that many autistic people encounter at some point in their lives. I did well to get to 46 before I broke down, but when I did break, the fallout was catastrophic. I didn’t know what the hell had hit me. I thought I was shuffling off my mortal coil. Or going mad. Or both. What I didn’t know was that my years of pushing myself beyond my limits had set me up for a chronic condition called Fibromyalgia. Look it up, it’s shit! At the same time, my life-long anxiety turned feral and my entire body started malfunctioning.

I was really unwell.

Masking had been draining the life out of me.

The only way back from that mental crap-hole was to be myself, not that I had any energy to mask anyway.

The only way back was to stop forcing myself to interact because it’s what society expected me to do.

The only way back was to be me.

I live with the knowledge that my health has suffered because of having to mask and it’s hard not to grieve for what’s been taken from me over the years. I didn’t choose to be autistic. I didn’t choose to be different. I didn’t ask people to be arse-holes to me. For most of my life, I considered myself to be the problem to be me, but I am not the problem.

I never was.

I can’t discard the mask completely. It’s impossible. There will be situations where I need to perform in order to get through them because not everything is in my control. Nor can it ever be. But I know that I can slip my mask on occasionally and draw from all those years of acting. The difference is that I give myself permission to leave when I’ve had enough and to accept that I will need recovery time afterwards and to lose the guilt-trip. Self-care is better late than never, yes?

My problems stem from trying to force myself to fit into a world that isn’t mine. Or that’s how it feels. Shove your size 4 foot into a size 2 shoe and it’s going to hurt, right? Try and walk in those shoes, every single day, and you’ll cripple yourself. You get me? The consequence is the damage to my physical and mental health. I’m basically f**ked and I can’t change any of it. I can’t rewind the clock. Not that it would help if I could because autism had a different meaning in those days. All I can do is be here as I was meant to be. As I am wired to be.

To help me to remember, I keep these words where I can see them everyday.

My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage. Alice Hoffman ~Practical Magic

 

 

 

 

 

Autism: Highly Functioning?

There’s a label when talking about autism.

‘Highly-functioning’.

It’s a term intended for professionals, but one that is used generally. In this post I’m going to try and illustrate why hearing this term makes me scream inside.

You can dress yourself? You’re highly-functioning!

I can dress myself, but sometimes I wear those same clothes for days because the thought of having to put something ‘new’ on makes me anxious. I do change my undies daily though – in case you were wondering?

I have sensory processing issues and hate to feel constricted in any way – so neck-lines, waistbands and sleeves have to be just right or my brain snaps. Also, I can’t tolerate anything that isn’t almost exclusively cotton. How I survived the seventies with it’s obsession for nylon, I’ll never know. Maybe that would explain whay I was a little shit most of the time?

I can physically dress myself, yes, but it’s a sensory nightmare.

You can wash your own hair? You must be highly-functioning!

I can physically wash my hair (though it’s getting to be more challenging now with the fibromyalgia) but it will be 80% dry-shampoo by the time I do wash it – which will be when I can’t physically get a brush through it. Or my scalp itches -whichever comes first!

I have a mobile hairdresser who comes to sort my hair out a couple of times a year. Even though she’s lovely (and technically brilliant) and I always look forward to seeing her – I still get the inevitable migraine which comes with having to make conversation. Recovery usually involves painkillers and at least three hours sleep.

You can apply make-up? You’re highly functioning!

I’ve been wearing make-up since 1983, but it’s a mask. Without it, I feel vulnerable. Might as well be wandering around in my bra and pants, innit? However, my routine rarely varies. I use the same products every day. Even if I go completely nuts and buy something new, I invariably revert to my old stuff because it’s familiar.

I don’t like brushing my teeth as they are sensitive as hell, but my fear of having fillings and extractions overrides my sensitivity to brushing.

Just because I can do something doesn’t mean that it doesn’t cause me discomfort or distress.

I used to be the opposite way. I bathed every day. Sometimes twice a day. Occasionally, three. It’s a miracle I’ve any skin left! My hair got washed daily, sometimes twice. It wasn’t necessary. I was just a nutter. Then again, my personal care has always been more psychological than beauty or fashion.

You clean your house? You must be highly-functioning!

Again, it’s all about the realms of what’s considered ‘normal’.

I used to clean obsessively. I would clean the entire house (including hoovering) every single day. The living room carpet got hoovered at least three times a day. I mopped the kitchen floor just as frequently and disinfected everything that was wipeable. I mowed the lawns as many times as I thought I could get away with without coming across as lunatic, but I admit that I once mowed the same lawn twice in one day! That’s not gardening. That’s a bit nuts!

As soon as a dandelion reared it’s head, I was out there with my Flymo. Then I’d be on my hands and knees cutting round the edges of the lawn with a pair of scissors. Yes, I was that person!

The anomaly is that I love to see dandelions elsewhere..

I realise now that it was about control. The same way my eating disorders were about control. I just didn’t understand why life was so hard for me. So I’d scrub, disinfect and mow until the late hours. Then, I’d numb my brain with homebrew. As the Smiths song goes: “I was happy in a haze of a drunken hour but heaven knows I’m miserable now.” For a while, the world was tolerable. I could do this life thing, yeah? Then I’d overdo it. I’d vomit and the next morning I’d wake up to find the world was as confusing as it ever was.

Vomiting aside, my corner of the world HAD to be perfect to compensate for the chaos outside my front door and that inside my head. Nowadays, half an hour of light housework equals three hours resting on the sofa. I am completely the opposite way, but it’s not by choice.

You do your OWN shopping? Are you sure you’re autistic?

I’ve always found shopping difficult because of the social aspect, sensory overload and the range of choice. Choice, you see, overstimulates my brain and the more anxious I become, the more I am unable to make choices – even simple ones like between coffee or tea.

A super-functioner and I can’t make a simple decision between tea or coffee? What am I like?!

Nowadays, I have the added joy (not) of fibromyalgia which limits me even more. For the days when I can’t cope with the supermarket, I do online shopping.

You can drive? Super-Functioner!!

Fancy that, an autistic person with a driving licence!

I was determined to drive because I struggled so much with public transport. Lesser evil, right? With me, it’s always been a case of one fear overriding another. However, getting myself from A to B is a different matter entirely..

For example: Recently, a 20 minute trip to Hobbycraft involved me virtually ‘driving’ the route via Google street maps, even down to checking out the exit route in the car park. Who does that, right? It took me twenty minutes, but it was necessary in order to familiarise myself with the route.

Diversions bugger my brain up. I’m still dealing with a diversion from last week! I NEED to be able to get into my car and drive the same route as I always do, but life isn’t so simple, is it? It creates diversions and obstacles all of which have a knock-on effect with me.

I establish routines and end up going to the same shops and parking in the same places which makes my world safe, but small.

I’m also crap with directions and distance. My sat-nav’s most used commands are ‘When possible do a U turn’ and ‘Route recalculation’. Nuff said?

Some days I can’t drive at all due to brain fog. Better safe than sorry, right?

You can communicate verbally? That makes you highly-functioning!

I can talk. I had no speech delay that I am aware of. I love words, only I prefer to type them. I’m much better at communicating via the typed word. But even then, it’s not simple, as my need for perfection means that my posts are edited 35 plus times! I can’t just ‘knock’ a post out, like most bloggers can.

When it comes to actual speech, I sometimes become aware that my voice has become ‘monotone’ and I have to prompt myself to change pitch. When I’m excited, I talk too fast. When I’m exhausted, I talk too slowly and my brain ‘buffers’. As in, something gets lost between the thought process and communicating what’s in my head.

Then I have meltdowns where I have this kind of ‘verbal diarrhoea’ thing going on. Or I stop talking altogether. This is known as a ‘shut-down’.

Many of us have co-morbid conditions as well as being autistic. It’s life farting in your face, then following through. As if life isn’t hard enough, right?

I also have Fibromyalgia which means I am in some level of pain or discomfort all the time. I also have OCD going on, which is a pain in the arse.

Fibro what? Isn’t that something you take for constipation?

No. That’s Fybogel!

Having fibromyalgia means that I am less able to function than ever and I will have to learn to live within even more limits as this illness is chronic and life-long once it’s established. I also most likely have Dyscalculia (number dyslexia) which makes life difficult as maths is such a necessary part of it. I’ve probably been short-changed out of hundreds of pounds in my time. However, I stand by my argument that trying to learn algerbra was a waste of sodding time!

Ooh. You have a learning difficulty? That makes you low-functioning then?

I was in the top set for English. I scored 98% in my history mock exam because I was (and still am) obsessed with the past. I was also in the bottom set for maths. So, you tell me?

I give up. I don’t know what you are!

I’m an individual.

The term ‘highly-functioning’ belittles how hard it is to get through every day. Just because I don’t need help putting my knickers on, it’s presumed that I function ‘highly’? In reality, every day takes a great deal of effort simply to exist. I’m always in some level of pain or anxiety – even in my sleep. Some days I barely function as migraines wipe me out or I reach my capacity to cope with anything unfamiliar or taxing. If you’re wondering what fibromyalgia has to do with autism. The answer is – EVERYTHING! It’s relative because a life of anxiety makes autistic people prone to conditions like fibromyalgia.

Yes, I can physically do stuff, but it comes at a cost, both physically and mentally.

I get overwhelmed quickly. I need regular breaks from social media/internet due to information overload. What energy I do have is reserved for my role as a mother. It’s primeval, because despite my health, I ensure that my son’s needs are met. I know the days of obsessively cleaning are gone because I just don’t have the strength and that causes me considerable distress, but it means that my obsessions shift elsewhere – as I discovered when I developed heath anxiety last year.

The term ‘low functioning’ is equally as belittling because in labelling someone ‘low-functioning’, society lowers it’s expectations of this person. They are pitied, rather than respected. Or worse, ignored. Just because a person needs help with daily care, doesn’t mean they can’t contribute to the world in a meaningful way!

A highly-functioning person might barely be able to function physically (or mentally) on some days, but there are expectations of them because of a term which most people take at face value. This is why we burn out repeatedly until we become chronically ill.

Is this really functioning highly?

Some days I barely function at all.

I am spending more and more time in survival and recovery mode and if you don’t understand those terms, lucky you!

The term ‘highly functioning’ implies that I am successful at life. That I can do things with ease?

To those who take one look at me and say, ‘You’re autistic? You must be highly-functioning then!’

COME AND LIVE MY LIFE FOR A WEEK. THINK MY THOUGHTS. FEEL MY FEAR, PAIN AND EXHAUSTION. TOUCH MY F**KING PLUGS UMPTEEN TIMES BEFORE YOU CAN LEAVE THE HOUSE – THEN TELL ME I’M FUNCTIONING HIGHLY!

*hyperventilates into paper bag*

The point of this post is to show that being physically able to do something comes at a cost. I’ve reached the point where I’ve worn myself out and I now I’m constantly ill.

If you look close enough, you’ll see the exhaustion in my face. You might notice the way my body slumps with fatigue. You might even see a tear fall unchecked or hear a door slammed in frustration. These are hints to an inner chaos – a chaos I’ve known all my life. Only death will bring me any real peace, but I’m not suicidal. I’m in no hurry to leave this life because there are souls who that make this struggle worthwhile. Three of them call me ‘Mum’ and I’ll fight until my last breath to be with them.

And it is a fight. A daily battle to exist, but it would be a lot easier if people would only take the time to respect us for who we are.

High or low-functioning – the terms are misleading and unhelpful. What we are is individuals.

All images are in the public domain via Creative Commons

 

 

 

IBS: The Big Squeeze

If you are unlucky enough to have IBS, (irritable bowel syndrome), you have my sympathy. It’s shit. Literally

What’s IBS?

IBS is a condition that affects the digestive system causing stomach cramps, diaria diahorea diarr the shits, bloating and constipation.

It’s common.

It comes and goes.

It’s usually life-long.

There’s no cure for IBS but it can be managed with medication, relaxation therapies, changes to diet and carrying spare bog roll.

With IBS some people poo for Britain. Others can’t poo. Some unfortunate sods alternate between the two.

Me? I have constipation dominant IBS, but it hasn’t always been the case. Do you want to know more? Or have you hit the X tab yet?

My IBS started when I was under a considerable amount of stress. My, (then), husband was having a nervous breakdown and his timing was especially crap because I was about to give birth to our second child. My digestive system took a direct hit and subsequently threw in the towel. I was 21.

At the start of my IBS I wasn’t constipated. On the contrary. The slightest hint of adrenalin and I was releasing the ‘sewer snake’. Bizarrely I needed a poo every time I went up into the loft, I have no idea why, it’s not as if our loft was an exciting place, it was cramped and full of stuff we couldn’t be arsed to take to the tip. Even so, within minutes of climbing up there my colon would start doing the can-can and I’d be taking the loft-ladders two steps at a time trying to get down to the bathroom.

By then, the time-scale between ‘stirrings’ and potentially soiling myself had reduced alarmingly. You get my drift?

Twenty, (plus), years on things have changed. I’m invariably constipated. Bummer, right? Alongside this is right-sided pain and bloating. These days I only have to side-glance a pea and I look 6 months pregnant!

Oh, and I fart a lot.

Ladies do not fart!

One, I’m no lady.

Two, everybody farts.

Even kittens!

So first, let’s define constipation.

  • infrequent poos
  • difficulty or straining when you poo
  • feeling of being unable to completely empty during a bowel movement, or the sensation of wanting to go but not being able to.
  • you fart for Britain.

I don’t know about anybody else, but my pain goes away a bit when I finally do manage to ‘download some brownware’.

Living With Constipation and IBS

Diet

I find it helpful to keep a food diary to see which foods give me gyp. Dairy and wheat are the usual suspects, but a lot of other foods can aggravate IBS symptoms.

Eating your food as close as it is to its natural state will benefit you and your bottom. As a general rule, if something has an ingredient list a mile long – it’s best to avoid. Also, overdoing the fruit and veg could make things worse. Remember me and peas?

Big one this: Never skip meals!

Also, stop eating when you are full.

Look, if you can’t breathe, there’s no room for pudding. You’ve had to undo your stretch-fit jeans as it is!

Laxatives

Sometimes it’s necessary to take laxatives. Occasionally I have to give myself a rid-out with prescription laxatives. This is only when the other methods have failed. Or I’ve been on the codeine. Eight sachets of this stuff and my colon surrenders itself completely. It’s what the GP calls a ‘bowel reset.’ This is a last resort and it’s under the supervision of my GP.

*It’s NOT a good idea to rely on laxatives indefinitely!*

Water

Dehydration causes constipation, so fill up on the H20!

Exercise

Moving about helps to keep everything flowing within the digestive system. There is a reason that most bed-bound people become constipated. Walk. Swim. Breakdance. Whatever. Just move.

Relaxation

If you have IBS, chances are you are stressed-to-shit, (if only ha ha), so it makes sense to address your stress-levels and do as much relaxation as possible.

Straining

Just typing this sub-title brings tears to my eyes!

One must always try and resist the urge to strain out a bowel movement!

We’ve all been there. Stranded on the lav with Mr Turtle’s head and his front legs hanging out of our lower orifice. It’s like the colon REALLY wants to go for it, then half way through says, ‘ You know what? Sod it. I’m bored now. Laters, yeah?’

What to do? We can’t sit there indefinitely with poo hanging out of our arses, can we?

Do we reach round and help Mr Turtle out? *boaks* Or do we take a deep breath in – grab onto the sides of the toilet seat – and bloomin well go for it?

Then there’s the pain..

Once I had to peer into the pan to make sure I wasn’t passing glass shards because that’s what it f**king well felt like!

It felt like labour. I was having to do the hoo-hoo-hoo breathing and everything.

I was cold and sweaty.

This was hardcore defecating and it comes to no surprise to me to learn that a lot of people die on the toilet. Granted most of those are elderly or have heart conditions. It’s a spike in blood pressure that finishes them off, apparently.

In the end, I birthed what felt like an 30lb baby through my bum-hole. In reality, it was a turd the size of a raisin. I was both awed and horrified at how something SO small could cause me SO much pain. It was a lot like giving birth, actually – only minus the drugs.

A straining session for me ensures a visit from Emma Roids (piles) where it hurts to sit down. Standing up’s isn’t much better. Plus, they itch like buggery!

Let me tell you now. There is NO dignity, whatsoever, in having to ram a three-inch suppository into one’s quivering bum-hole. Or anybody elses. Or in buying tubes of Anusol in the local supermarket. It’s hardly discreet is it? The clue’s in the name. ANUSol.

At this point, you’re either horrified (bordering on projectile vomiting) or nodding with profuse empathy. If it’s the latter, I pity you.

My last remaining tips are as follows..

Toilet Roll

Don’t buy cheap 2 ply. Your botty deserves better, no? Plus, yer fingers go through the cheap crap – which can be icky. Pay extra and pamper the poop-shute!

NOTE: Definitely, no IZAL. Using Izal is akin to wiping one’s arse with a crisp packet!

Blood in Poo

If you have piles through straining you may or may not experience blood when you wipe. Or you might see it in the pan. If this happens to you and it’s your first time, postpone the heart-failure. It’s most likely due to piles. Get it checked out, just to make sure.

Purge, When You Get The Urge

For this, I penned a lil poem.

Every time you need a poo.

Go t’ bathroom and sit on t’loo.

Look at your phone or read a book.*

Don’t delay cus it’ll hurt like fuck hell.

Changes In What’s Normal For You

If your symptoms change see your GP. 99.9% of the time it’s nothing to worry about, but it’s always better to be safe than sorry.

Finally, talking about what’s going on with your bowels is only as embarrassing as you want to make it. It’s a normal (and essential) bodily function. Embarrassment costs lives. Opening up (shameless pun) can mean the difference between life and death. Nuff said?

  • Don’t sit on the loo for hours reading books or messing with youir phone. You’ll make yer piles worse!

Now That’s What I Call Autism!

People of a certain age (*coughs*) will remember when a compilation album called Now That’s What I Call Music! came out in 1983.

I was 13.

What are we up to now? Now That’s What I Call Music 7509?

I’m almost 50!

No doubt, the multi-gazillion franchise will go on long after I’ve stopped breathing..

*Note to self* Record funeral mix-tape and call it, ‘Now That’s What I Call Being Dead!

The difference is that I could probably name all the tracks on the original album, whereas I couldn’t name a single track on the latest one. This is probably because I’m geriatric (not really) and geriatric people tend to live in a musical time-warp when they were youthful and had their own teeth.

I’m no music snob, but the auto-tuned, sampled-to-the-hilt crap that’s trawled out to the masses these days makes me want to hack off my own ears. What happened to pure talent? You could shove me into a recording studio with all its sorcery and I could could bang out a s(hit) record in three hours flat!

Granted, I would have to pay a body-double to do the bumpin’ ‘n’ grindin’ on the video, as that particular ship has sailed thanks to arthritic hips. Actually, I do grind, but it’s more of a ‘bone on bone’ thing which isn’t as arousing, especially when it’s combined with the stench of Deep Heat.

Anyway, back to Now That’s What I Call Music or as my dad used to call it, ‘That’s What I Call a Load of Crap!’

So, some of us bought (or were bought) Now That’s I Call Music on vinyl (album, not flooring). The rest of us pestered our mates/siblings to borrow it, which they did, albeit reluctantly, and only after issuing a warning of certain death if said album was returned to them with any defects, such as scratches or tea-stains on Tracey Ullman’s face.

The beauty of cassettes was that you got to spend hours of your life jamming biros into cogs trying to wind the b@stard tape back in. Remember that? Happy Memorex, eh? See what I did there? I’ll get my coat!

In the spirit of those bygone times, I present to my fellow autists, a mix-tape.

Enjoy and feel free to add ‘requests’ via the comments section.

A Side

1. Don’t Stand So Close to Me ~ The Police (for the claustrophobics, obvs)

2. Move Closer ~ Phyllis Nelson (for the space-invaders)

3. Too Much Information ~ Duran Duran (social media overload)

4. Anxiety ~ Good Charlotte (‘I am anxiety free!’ said no autistic person. Ever)

5. Green Day ~ Minority “Stepped out of the line. Like a sheep runs from the herd. Marching out of time. To my own beat now”. (blog author adds: So, up yours, haters!)

6. Pushing The Senses ~ Feeder (I push mine round in an old Tesco trolley) Too literal?

B Side

1. 99 Problems ~ Jay Z (I got 99 problems but the Nintendo Switch aint one)

2. Heaven Knows I’m Miserable Now ~ The Smiths “I was happy in the haze of a drunken hour, but heaven knows I’m miserable now” (You get pissed, wake up and realise that everything is still shit)

3. 19th Nervous Breakdown ~ The Rolling Stones (currently on my 20th)

4. Spinning Around ~ Kylie (literally, though not necessarily in size zero hot-pants)

5. Communication Breakdown ~ Led Zeppelin -“Communication breakdown. It’s always the same. I’m having a nervous breakdown. Drive me insane! (self-explanatory, really)

6. Beloved Freak ~ Garbage ~ “People lie and people steal. They misinterpret how you feel. And so we doubt and we conceal” (adoring you from afar, Shirley Manson, but not in a criminal way)

Bonus track – Senses Working Overtime ~ XTC ~ “I got one, two, three, four, five senses working overtime”. (My senses literally never clock off!)

Fibromyalgia and the Heatwave

Just in case you hadn’t noticed, we are in the middle of a heatwave.

It’s not even 11 am and it’s 21 degrees! That’s, like, CRAZY! Well, it is for England, anyway.

People are walking around semi-naked (not always a good thing) and if I see one more f**king fly, I will scream!

‘Bastard’. Also Known as the Common House Fly.

Every year (around this time) we get a maggot infestation in the bins, because no matter how fast I am in putting our rotting food into the compost bin, those bastards are quicker. They are Ninja fast and reproduce just as quickly. Our bin becomes a maggot utopia. That is, until I theatrically snap on the rubber gloves and introduce the maggot-massive to my friend, Dom Estos!

Anyway, enough about flies.

Are you still there?

Have you gone to vomit, or check your bins?

Back to the weather..

Heatwaves make me feel shit. This is because my body can no longer regulate temperature. Have I mentioned that my body hates me?

For healthy people – hot weather equals sunbathing, fun, eating charcoaled sausages, collapsing chairs, sunbathing and copious amounts of alcohol.

For me, it’s migraines, sinusitis, brain fog, palpitations, fatigue and IBS.

Not exactly Club Tropicana, is it?

The magic temperature that suits me is ‘mild’. Whenever I hear the weatherperson say ‘mild’, I want to kiss the TV/radio/whatever. On hearing the words, ‘cold front’ or ‘heatwave’, I take myself off into my room and adopt the fetal position.

Please, don’t start me on rain!

There’s no scientific proof that weather affects fibromyalgia, but those who suffer with the condition will verify that their bodies are like barometers when it comes to the weather.

Slight diversion: We had a barometer when I was a little girl back in the 1970s – it was a reindeer with the barometer bit where it’s chest should have been.

I’ll let you into a little secret: I was worried that Father Christmas was missing a reindeer!

Or was this what happened to them when they got too old to fly?

Worse, I had to say goodnight to ‘Rudolph’ every night as I passed him on my way up to bed!

‘N’ night decapitated Rudolph with the glassy staring eyes. Please don’t kill me in my sleep!’.

Childhood trauma aside, I was fascinated how the dial swung from rain to fair etc. These days, I don’t need any atmospheric pressure measuring instrument (antlered or not) to let me know when the weather is going to change because my body tells me when the weather is going to be bad. Or good.

Mine has three weather terms: Good. Changeable. Shite.

Thanks to the heatwave my barometer is firmly in the shite zone. I feel ill. I’m miserable. Even the dog is giving me a wide-birth! Mind you, she’s fairly miserable herself. She just lies about on the floor looking pathetic, not that I blame her.

However, that cool kitchen floor sure looks inviting, no?

Anyway, here are some gratuitous tips of how not to die in the heatwave.

  • Stay indoors. (obvs)
  • Fill your home with fans. (log onto Argos and buy their entire stock)
  • Drink water. LOTS of water. (Dehydration will make you feel even crapper than you already do) (Fact)
  • Stand under a pleasantly cool (not cold) shower and refuse to move. (until someone needs a poo)
  • Do your outside activities in the morning or evening.
  • Live on salads.
  • Keep your clothing lightweight and floaty.
  • Go bra-less if you’re confident you won’t fall over your own nipples.
  • Go commando. (Women suffering from post-menopausal ‘drip’ might want to skip this one)
  • Find a nice north facing room and live in it until the weather breaks.
  • Borrow the washing-up bowl. Fill it with cool (not cold) water and stick your feet in it.
  • Lie down on the cool kitchen floor (with or without the dog) If you have an old one like mine (dog, not floor) leave plenty of space between you as geriatric dog breath could put you into a coma – leading to possible death and you’ll decompose a hell of a lot faster in this heat! (think of the smell!)
  • If all else fails, lie on the floor in your undies.

If you’re suffering in this heat, I wearily raise my fist to you in a show of sweaty solidarity.

If you saw a heat wave, would you wave back? ~ Steven Wright

Fibromyalgia and Guilt

It’s a few weeks since I got my fibromyalgia diagnosis and I’m struggling to adjust to being fibromyalgic. Is that’s even a thing? WordPress thinks not. It wants to correct it to ‘fibrillation’.

I’m struggling to adjust with the limitations. Of fibromyalgia, that is, not fibrillation.

I’m also struggling with guilt.

One problem is that people can’t see pain. They see the effects of my pain, which may come across as me being miserable. Or they might notice that I’m having a lot of sofa time. I don’t ‘look’ ill (not with make-up on, anyway) so I must be lazy?

Anyone who knows me in RL will no that this is not the case.

I know that having this condition isn’t my fault. I’ve always struggled with anxiety, therefore it was inevitable that one day there would be one trauma too many and the proverbial shit would hit the fan. I’m now wondering if the ‘nervous breakdown’ I had last year was in fact a severe fibromyagia flare up and the fear of what was wrong with me contributed to the severity of the symptoms? At the time, I told my GP that I felt something physical was driving the anxiety and not the other way around. It also explains why I couldn’t tolerate any medication because fibromyalgia can make you sensitive (or intolerant) to drugs, even simple painkillers.

The way I look at it is that I have three things to cope with: Pain, fatigue and guilt.

I get that it’s not my fault and yet, I feel guilty.

I feel guilty for having to rely on others.

I feel guilty about cancelling on people, not that I get out much.

I feel guilty about the stuff that gets postponed until I have a good day.

I feel guilty about being a miserable git because I’m in pain.

I feel guilty that I constantly complain about the pain from a condition that won’t kill me.

I worry that people won’t take my pain seriously.

This was one day last week.

Situation: Shopping.

I woke up after a good night’s insomnia. I scanned my body for pain levels. It was a 2. So I decided to go and grace the supermarket with my presence, instead of doing it online.

I sat in a well known coffee establishment and drank my decaf cappuccino (with coconut milk) feeling quite positive with life. Maybe, just maybe, today was going to be a good day?

At that point, the universe farted in my face.

My body protested the second I walked out into the humid car-park. It protested even further when I walked into the refrigerated section of the supermarket. This is because I can no longer handle sudden changes in temperature. My neck/ shoulder pain kicked in. However, the token was already in the trolley, so I pushed on – literally!

Pushing trollies these days feels like I am pushing a car, especially if I get one with a wonky wheel – which I inevitably do. Turning those corners with my dodgy neck and a set of four wheels that want to go the other way is an absolute joy. NOT.

Then, there’s the checkout experience..

On this occasion, I was in a supermarket where the checkout operators are trained to rapid-fire your goods at you at finger-breaking speed. You know the one where your fingers are in danger of being trapped between a can of sardines and a two-man tent? You see people limbering up as they queue, or power-lunging by the cat food. It’s more of a cardiovascular workout, than shopping. Also, there’s no help with packing here. If you’re slow (like me) you risk angering the fifty or so people behind you. However, it’s cheap, so you learn to ignore the glares and fists being slammed repeatedly into bags of frozen peas.

Heading back out of the chilly supermarket into the stifling heat of the car-park, I felt what little energy I had drain away from me. My battery went from 30% straight to PLUG ME THE HELL IN I’M ABOUT TO DIE!!!

I needed some energy, but I can’t ingest sugary things because my body is a bastard, so I had to make do with Linkin Park on full-volume.

What track did my my car ‘randomly’ chose to play?

I’ve Given Up.

The screamed lyrics, ‘Put me out of my fucking misery’ certainly raised a few eyebrows as I cruised past a well known bargain store (flogs 100 tea-lights for 99p) but I didn’t care because I needed the adrenaline blast to get myself home safely.

Anyhoo, by the time I got home and had taken my shopping bags inside the house – my muscles were basically on fire and it was all I could do NOT to slump onto the sofa there and then, but the ice-cream point-blank refused to put itself into the freezer – so I pushed on through the fatigue and pain.

Some days I wake up feeling crap. My pain levels are up or I have brain-fog and actual shopping is a no-no. Virtual shopping is a big enough ask on days like these. On other days I wake up feeling OK, but the pain kicks in when I’m out. Fibromyalgia’s be tricky that way. Hence, this particular situation.

Once I’d put my shopping away, I saw that my basket of washing needed pegging out and as soon as the ‘sod it’ thought entered my head, the ghost of my mother-in-law appeared (not really) saying, ‘It’s too good a day not to get that washing out, girl’ so I pushed on some more, promising myself faithfully that I would rest afterwards.

As soon as I stepped outside into my ‘sun-trap’ backyard, my head started to throb and my body ached as if I had the flu, but, still I refused to give in. Why? Because I’m an idiot!

I was only pegging some washing out. It wasn’t as if I was doing hardcore housework, but with each action of raising my arms, I felt as weak as a kitten – only less cute. I snapped a few pegs (that’ll teach me to buy cheap crap) and fought the urge to launch the peg-bag over the fence. Not that it would have gone very far. No strength, see?

My body was saying, ‘Oi. Oi. Oi. Moron. Step away from the classy rotary airier. YOU NEED TO REST!’, but my brain ignored it because it’s a stubborn tw@t and there was no way it was going to let a basket of washing defeat me! So, with a peg between my teeth, I soldiered on.

Having completed the task, I collapsed onto the sofa. I remained horizontal until I regained enough energy to prepare tea, which was three hours later. Alas, the migraine which had been threatening since the supermarket finally got the better of me and by 6pm I was in bed with ‘Coco’ and ‘Coolio’. That’s Co-codamol and Cool Strips, to you!

This was one day and by no means the worst. I just wanted to demonstrate how something menial, like shopping, can be such a pain in the arse – or whatever part of my anatomy my fibro happens to be manifesting itself in at the time.

The symptoms change, but pain and fatigue are constant.

The thing that bothers me the most is those hours when I am lying on the sofa. It bothers me that I can’t do what I want to do, when I want to do it. Or, sometimes, not at all. It drives the control freak in me up the wall! Then, because I feel guilty (and frustrated) I overdo things as soon as I regain some energy and find myself in this cycle of exhaustion, pain and guilt.

A little research shows me that the guilt trip isn’t uncommon with fibromyalgia sufferers, so I know that people will understand this post. I want them to tell me that the guilt doesn’t last forever. Or maybe that the guilt will push me when I need to be pushed because depression is getting the better of me? FWIW. I really don’t like crying. It makes me look like a psychotic panda. For this reason alone, I should have my tear-ducts removed.

I feel guilty for writing this post because there are people a lot worse off than myself. There is no termination point. I can walk. I can function, of sorts. This won’t kill me, but knowing I won’t die from this doesn’t lessen my pain. Or the exhaustion. Or even stop me whinging. It just makes me feel even more guilty than I already do.

To end this post, I will leave you with one of the oldest cliches in the book, but also one of the truest. Print it off. Stick it on your fridge, cupboard or forehead and absorb it’s message.

Appreciate your health: It’s a gift that’s not appreciated until it’s gone.

All images via Creative Commons

 

 

Autism: Fantasy Versus Reality

For the majority of my 9 year old autistic son’s life, he’s lived in a fantasy world made up of fictional characters. He becomes those characters. He believes in them. To him, they’re real.

It’s escapism. A way of coping with a confusing world and I understand it because I’ve lived in a fantasy world of my own, particularly as a child. One thing my mother picked up on was how I was never ‘here’. The reason for that was that ‘here’ was (and still is) overwhelming and causes me a great deal of anxiety.

As I grew older, I escaped into music and books. Music conjures up vivid imagery to me and my mood changes with tempo. It would seem that I am wired to physically and emotionally react to music.

Music provides me with the protection that my imaginary world once did with fictional characters. With music, I’m physically here, but mentally (spiritually) I’m elsewhere. Walking down the street becomes a tolerable experience with my ear buds in. I know that people can see me, but I am anesthetized to them and the environmental noises that make me anxious.

I need escapism. While it’s not the same world I inhabited as a child – my need for an alternate universe remains the same. The difference is that I understand what is acceptable (and what is not) of me as an adult. But make no mistake – when I listen to music or lose myself in a book, I am as far away as I ever was.

Being autistic, I don’t have interests, I have obsessions and one of mine is death and true to my autistic self, if I can find a way to weave my obsession with mortality into a conversation, I will, but don’t worry, I haven’t gone off on a tangent. It’s relative, so bear with me.

I don’t see my interest in death as being morbid. It’s something that is going to happen to me, so I need to familiarse myself with it because – the fear of the unknown, right? I’ve already planned my funeral and one of the songs I have chosen is David Bowie’s Life on Mars.

You see, Bowie knew a thing or two about misfits. He knew that they would identify with his style – visually and musically – thus making him a very rich man. Arguably, one of his best tracks is Life on Mars – a song which Bowie labelled, “a sensitive young girl’s reaction to the media” and added, “I think she finds herself disappointed with reality… that although she’s living in the doldrums of reality, she’s being told that there’s a far greater life somewhere, and she’s bitterly disappointed that she doesn’t have access to it.” For me, it’s reminiscent of own crushing disappointment with reality. I was the ‘girl with the mousey hair’ watching movies over and over (and over) again – wondering why reality could never live up to them. I know that my family will struggle to understand the song’s meaning, but if ever a song existed that was my song – it’s this one.

In fact, in my fantasy world – Bowie wrote it for me, innit?

A lot of autistics live (or have lived) in a fantasy world and if you understood how hard it is to live on a planet that’s not compatible with your needs, you would understand why this happens. The bottom line is this: Our imaginary worlds are where we have complete control over ever single thing that happens.

Control is something that we have little of in the ‘real’ world. It’s the reason we flounder through life – succumbing to mental illness. Some of us will take our own lives. Many of us will die prematurely from stress related conditions and diseases such as cancer and heart disease. The rest of us will struggle with chronic health conditions that won’t kill us, but which will impact our already limited lives. But inside our mind is a place where we can be ourselves. A place where we don’t have to fight to be heard or accepted. A place where we can be ourselves, without fear.

How sad that this is the stuff of fantasy, instead of reality?

This is our reality.

I know how crap this world can be. I know how unkind human beings can be, so I indulge my son’s need for fantasy because I understand his need for escapism. The real world disappoints. It hurts. It makes us anxious. I wish that I could spare him all of this, but I know that one day his imaginary world will no longer protect him. I dread that day, but I know that it will because this isn’t our world. It isn’t autism friendly. Not yet. Not by a long way. This is why so many of us describe feeling as if we are from a different planet. We’re aliens having to work exceptionally hard to try and fit in here.

In our fantasy worlds, we live, rather than exist.

In reality, we exist, rather than live.

Whether escapism is being a fictional character, or losing ourselves in the lyrics of a song or the pages of a book – it’s important that we do it and it’s important that people, especially parents, understand why.

“For a child with Asperger’s, especially a fantasy subtype, fantasy can become an obsession. If fantasy becomes an obsession, it may take therapy or perhaps medication to correct the situation. Do not hesitate to contact a psychologist for help if your efforts are unsuccessful. A child locked in fantasy is a child lost to reality.”

I came across this on a website specifically for parents of children who have Aspergers.  The last sentence in particular suggests ignorance of the importance of escapism and it’s function. Is intervention really in the child’s best interests? Or is it another example of autistic children being forced to adapt so that non-autistic people can feel more comfortable in their presence?

Our autistic lives revolve around escapism and obsessions. If a child’s obsession involves wearing a Jason mask AND nicking your kitchen knives, it’s probably best that professional help is sought – pronto. Otherwise, leave them be. Escapism is serving a purpose. It’s keeping them sane. The important stuff is going in. Nobody was more ‘locked in a fantasy world’ than I was as a child, but I do understand the difference between fantasy and reality. It’s just that reality overwhelms me, so I need to intersperse it with frequent visits to my fantasy world – medication not needed.

“Fantasy is escapist, and that is its glory. If a soldier is imprisoned by the enemy, don’t we consider it his duty to escape?. If we value the freedom of mind and soul, if we’re partisans of liberty, then it’s our plain duty to escape, and to take as many people with us as we can!” ~ J.R.R Tolkien

 

 

Supermarket Weep

I went shopping the other day – nothing unusual with that.

It’s half-term, so I took my son with me – nothing unusual with that either.

However, something happened at the supermarket check-out that ROCKED MY WORLD!

But first, some history..

The first time I realised I could be ‘getting on a bit’ was during my third pregnancy when I stole a look at my hospital maternity notes and saw the term “elderly primigravida”.

Elderly? I was only thirty-eight! Then again, the average age of mothers where we lived at the time was about 16 and I defy any thirty-something mother-to-be to sit in a waiting room full of girls fresh out of their school uniforms and not feel ancient.

Having The Boy took it’s toll on my health, so much so that my brain communicated the message to my ovaries that my breeding days were over and I entered, was catapulted into the menopause at 39 years of age.  Bummer, huh?

The problem is that my mind still thinks it’s 17 (the age I was when I had my first son) which would explain my HORROR when the young (male) cashier at the local supermarket rocked my world with this question.

‘Is your grandson helping you to pack?’

Grandson?

It would have been more tolerable if my son was a baby or a toddler, but he’s almost as tall as me with size 4 feet, not that the operator could see his feet from where he was sitting. But you get my drift?

I stared at the young man.

Stared? Are you sure you’re autistic?

Look, my eye-contact is questionable at best, but when sufficiently antagonised, I can out-stare a statue, mate.

After what seemed like hours, I blurted out: ‘HE’S MY SON!

‘Oh my God. Sorry! Er, anyways, you don’t look old old enough to be a grandma etc.’

Put the shovel down, mate. Stop digging. The damage is done. You mistook my 9 (looks more like 11) year old son for my GRANDSON! You PRESUMED it must be the case. Do not address me again. Scan my goods. Take my payment and allow me to exit the supermarket with what remains of my self-esteem.

He never uttered another word.

There was this awkward atmosphere with me aggressively shoving my fruit and veg into bags for life and him fast-tracking my goods through the scanner as fast as was humanely possible. That done, I practically chucked my clubcard at him. I may have been in a hurry to get the hell out of there, but I still wanted my points!

Five minutes later, I was sat in the car – sulking.

“Are you OK Mum?” The Boy asked me.

I don’t know what gave it away that I wasn’t OK. Maybe it was the way my knuckles gripped the steering wheel despite the fact we were stationary?

I said I was fine.

I wasn’t fine.

I really wasn’t.

I (who usually can see the funny side in most things) wasn’t fucking fine.

What I couldn’t work out was WHY it was bothering me so much? I didn’t even have the ‘time of the month’ as an excuse because I’ve not had a period since 2011!

This was the sort of thing my mother would have reacted badly to. She’d have given the young man (see, even that makes me sound like an old codger!) an earful then flounced home to slam some doors. Then again, this was the woman who in her late 60s decided to drop the ‘nan’ bit and sign her grandchildren’s cards with her name. A few years earlier, short-arse rock God, Prince, had ditched the ‘Prince’ bit for a squiggle and became ‘the artist formerly known as Prince’. So, this was how my mother came to be known as ‘the artist formerly known as Nan’.

Was I becoming Gerascophobic like my mother? *

After a day of sulking, I concluded that, yes, the comment had touched a nerve because I physically feel much older than my years due to illness and early menopause. It’s yet another reminder that my youthfulness has fucked off (taking my oestrogen and collagen with it) and will NEVER return.

I guess the problem is that I’ve been used to being the youngest in everything: The youngest child. The baby sister. The youngest in the class. The youngest wife. The youngest mum.

I wonder if it’s any coincidence that this ‘incident’ happened during my silver-hair transition? I have about six inches of silver hair now, but ffs, was it really the artificially coloured hair which made the difference? Not that I am going to slap the dye back on anytime soon  as the lure of cheaper hair-dos takes priority over being mistaken for my son’s grandmother.

Even so. *twitch*

At the end of the day, it’s not a big deal at all. Or it shouldn’t be. There are certainly bigger things in the world to worry about, right? I also understand how lucky I am to have a child full stop etc etc so no need to go there.

Bottom line? The first time somebody mistakes you for your child’s grandparent instead of mother? That’s a psychological kick in the flaps, whether you admit to it or not.

So, my flaps having been metaphorically and psychologically kicked, I uphold my right to sulk profusely.

I may be some time.

*(Gerascophobia is an abnormal or incessant fear of growing older or ageing)