The rules

“Are you left-handed?” She asks as a smile begins to form across her face.

“No, that’s just the way I use a knife and fork!’ I say, rolling my eyes to self-mock.

This is not the correct way to use cutlery. Somewhere it is written, and therefore it is so. I’m not going to tell her I’m dyspraxic. I’ll let her think I’m uncouth or common instead. After all, I am both of those things and she doesn’t care regardless.

What does it matter so long as you get to eat?

There are rules everywhere, and they often serve no real purpose other than to mark others out.

Every day I struggle with words for example. I can hear how they should sound, how they are meant to sound, but I cannot articulate them. Sometimes, instead, I’ll claim to change my mind about a word I had planned to say so that I can replace it with something easier. Why use an utterly unpronounceable word when a word you can say will do? I can sense others sensing the mediocrity in me.

I also mix words up entirely. They will have some letters or meaning in common, but they are not quite right. My brain is scrambled. Things don’t connect in the same way but somehow it works. Sometimes it works for the better.

However, I am thirty-five years old, and I cannot tie my laces. I am thirty-five years old, and I cannot ride a bicycle. I cannot catch a ball.

I tried to play pool once, but I smashed a girl in the head with the cue stick instead. She had it coming. She was sat in close proximity. The first round of jokes is on me.

When I was 19, I drunkenly fell down the stairs at my halls of residence. Determined to prove I wasn’t really that drunk I tried it again, and of course, I fell down the stairs again. I didn’t find out about the dyspraxia at university because I was mostly drunk or hungover. I had a ball.

I did discover that I  can focus intensely when surrounded by utter chaos. I listened to The Beta Band pretentiously on repeat and at full volume while I wrote my dissertation. I also saved a bibliography over a 5000-word essay about infanticide in 18th and 19th Century Britain. The relief of finishing an essay just in the nick of time, immediately crushed by losing it all a few seconds later. That is one of my favourite memories of university.

Reading for a significant length of time was, and remains, difficult for me. My concentration dipped the as it does now. Then, I thought I was lazy. Now I know I am lazy AND dyspraxic.

I have software that reads text back to me robotically. Given all the technology we have in 2018 you’d think this would be more high-tech but it feels oddly retro. It’s not like listening to a podcast. It grates.

Another tale-tale sign of dyspraxia (and rule-breaking) is hypermobility. I can turn my foot around 180 degrees.  My flexible arms are my party trick. If only I’d worked at it when I was young, I could have been a contender.

When you are a child with a hidden disability (also hidden to yourself) you tend to think you are the problem and that feeling remains with you post-assessment. As a child,  you are forced into a range of activities you struggle with but at least you are in an environment where you can fail. As an adult, you can avoid more of these challenges but failure feels like less of an option.

There is a pervasive mindset that you cannot improve at something unless you have a natural ability for it.  That’s seriously off-putting if you have a learning difficulty.  You can talk yourself out of half of your life.

Whether you are good at something or horrible at it, do it anyway. Do it for the sake of it. Do it because life isn’t about being the best at things.

Do you remember the princess who was able to prove she was a real princess because she felt a pea underneath a tower of mattresses? She was a ‘real’ princess but she had a hell of a time getting to sleep.

Some rules are important. They make things work. The rest just make people feel good about themselves and should be taken with a pinch of salt.

In other words, I’ll eat how I please.

38:83

Image of Teddy Boy Clothes in London

Excerpts from an ongoing project about my father. There is a lot left out in respect of family privacy.

I see my dad’s life in neat compartments. In the first one, he is a fun-loving boy, running wild through fields while his sisters stay indoors to scrub floors and prepare the dinner. In the next compartment, there is an old photograph of him aged fifteen and in full military garb. He is the Irish army because he lied about his age, and as such, his uniform is very much wearing him. A soldier’s life is not for him, and so next up, he is a man on a ferry, England-bound to turn heads and break hearts. Fast-forward to him aged thirty, he puts away childish things and settles down but continues to play up before Catholicism re-enters his life, not that it ever entirely left, and he mellows. My birth takes place in his 45 th year, and it signals the last chapter of his life. It’s the longest one yet, but it is holding steady.


I often think of my dad’s younger years as if he was in a film. It’s in black and white, and his charm is amplified. He’s a few inches taller in this version, and he has a full head of hair, although I imagine he also uses pomade to style it as does now, but to cover the bald patch instead. The film is set in 1960s London but before Beatlemania hit and Dad is gallivanting around town, changing jobs, digs and girlfriends every other week.

Of course, the reality wasn’t exactly like this; it was bleaker, and it was in colour.

I only hear about that time in snippets. When he’s had a few drinks and is in a sentimental mood. These conversations often take place in the kitchen. It’s far from the most comfortable room in the house, especially with the dinner table that belongs in a much bigger room, but without fail its where things in this family happen. Usually, he tells me about the scrapes he got himself into, like the landlord who didn’t let his tenants stay in their rooms during the day and used Alsatians to enforce the bizarre, rule. My dad managed to get out without injury to him or the dogs. Or, on another occasion, when he didn’t have a train ticket, he managed to get away by tip-toeing between
two rail inspectors who had their backs towards each other as they counted the stubs from their latest collection. Maybe they were having a bet.

On one evening though, when I was in my late twenties, Dad tells me a different story. He’s sipping cheap red wine from a tumbler and smoking rollies, Golden Virginia until they almost burn his fingertips. He often flicks the ash straight on to the kitchen floor, I’m not sure where he picked this habit up, but he’s unlikely to give it up now. He’s playing one of his compilation CDs, and the Big Bopper pipes up before stuttering until I wipe the disc clean with an old tea-towel. Dad says this song, Chantilly Lace, brings back memories and I ask him which ones expecting a funny story in return, but instead, he tells me something that’s stuck with me ever since.


 

It was an accident

Female students sitting and playing on a playground structure.

I can’t believe I kept this quiet but I guess I wasn’t old enough to know better. It had started innocently enough; as a silly game. I was four or five – old enough to be spending the mornings in Reception and afternoons back at Nursery across the road.

It must have been winter as the woolly hat I was wearing played an important role. It was one of those woolly hats with a bauble on the top and a scarf attached to it – like a bow. A group of us kids waited outside for our teacher, Mrs R, to walk us through the noisy ‘Junior’ playground, through the big metal gates and across the road to the comparative safety of the nursery, where we were the older ones.

I stood patiently on the edge of the infant’s playground and beside the two steps which acted as a boundary between both worlds, neither of which I was keen to inhabit. I suddenly felt a force pushing me down the stairs and whizzed around to see M, one of my group, smiling with all of his teeth.

“Stop it!”, I protested but he carried on and it became a game. My protestations became less convincing.

“Stop it!” I repeated through giggles and this time he did.

“Your turn,” he said and enthusiastically we swapped places. He stood with his back to me and gamely waited for my retribution. I pushed him with such force that he fell on his face, hard. I heard gasps. All eyes were on M. I can’t remember how he got up or if I helped him to. The next thing I recall is the blood. I tried to stop its flow with my red woolly hat.

“Please stop bleeding, please stop! ” I repeated, again and again.

Then suddenly all of the other kids fell back, Mrs R had come outside. And that’s when it
happened.

“Who did this?!” It wasn’t that they all pointed their finger at me like I was Peter Lorre, instead they just all moved away from me and M until it was just the two of us; the victim and the abuser.

“It was an accident…”

That old chesnut. Mrs R was having none of it. She grabbed me by my shoulders and hurled me against the nearby brick wall, bashing me back and forth against it and all the time shouting that she would tell my mother, the School Cleaner.

The memory feels like drowning. I feel submerged in water each time my back slaps the brickwork. Then I piss myself and in doing so, I pull myself to safety. Mrs R has caught hold of herself. She tends to M and another teacher takes us back to Nursery where I spend the afternoon pretending to play by myself in the fake shop (essentially a set of shelves with some kind of awning). I’m soaked through but either nobody notices or nobody wants to bother me. I think the latter is true as I have no idea how I’d manage to keep that sweet peice of real estate to myself.

When I got home I was silent. I suspected that Mum knew and I waited for her to give me a sign but she didn’t. Mrs R was incredibly nice to me the next day although M wasn’t in. In time he’d show off the scar it left with pride and ask if I remembered doing it. I wonder now if the scar bothered him as he got older. It wasn’t huge but it was on his face. I imagine he remembers that day too and maybe not at all how I remember it.

Body neutral

Vintage beauty poster
This is a repost from a previous blog/life.

I am not positive about my body. I am positive about other people’s bodies. Not mine. I do accept my body, though.

I was a 11lbs baby. Doctors and nurses popped by to have a look. I had a head of hair and a monobrow.

Telling that story as an adult often gets a knowing look. Then I explain I wasn’t always fat.

I was a slim child and a slim teenager. And then I started getting fat.

Slim or fat, I spent my childhood, teens and twenties loathing my body.

Now I spend a lot of time reading blogs and tweets by fat women I admire. I love their bodies. I don’t really care for my own. It’s a bit too close to home.

However, I don’t hate my body anymore. At some point, and I don’t know when it began, I started accepting myself. Being easier on myself. I’d love to say it is more than acceptance, that it is love but it isn’t. A lifetime of self-loathing doesn’t switch overnight, but I don’t look back and wish I was a younger, thinner version of myself. That version of myself was riddled with anxiety and self-doubt. That version of myself was so sensitive it often felt that several layers of skin had been stripped back. And I have a low pain-threshold.

So for me, acceptance is an excellent place to be. Acceptance is being naked in front of someone you love. It is going swimming. It is holding your large, wobbly legs up while someone waxes your undercarriage. It’s going out on a summer’s evening when you are sweaty, and your make-up has long faded. It’s posting a selfie you know doesn’t do anything for you. It’s making your Instagram profile public. It’s looking at yourself in the mirror without sighing.

This doesn’t mean I like what I see. I never have, apart from special occasions. I want to be healthy, but I don’t equate that with being thin. I equate that with not losing my breath after climbing a flight of stairs.

The reason I want to be thinner is that being a fat woman is really tough. People make assumptions about your character, about your lifestyle, your work ethic, even your romantic status.

There is only one story my dad ever tells me about me. It makes him proud. After two weeks holiday as a child, I must have been nine or ten, I came home with a tan (it was the only time, I almost always go tomato-red). He walked me to his old stomping ground in Camden Town and bought me diet cokes in the pubs he used to frequent. My brown hair had hints of blonde, and my green-blue eyes contrasted my tanned skin. And I was thin. And that is the proudest he has ever been.

When you are a woman, there is no doubting your worth is tied up with your appearance. If your dad was born before WW2 in a country that doesn’t allow a woman an abortion, you can bet your bottom dollar that he measures it out the same way.

There is a Tony Harrison poem called ‘Book Ends’. It was in the GCSE English Literature Anthology in the late 1990s. As a teenager who quarrelled with my dad about politics, religion and would you believe it, vegetarianism (had me for five years, came off the waggon in 2002 when I ate a chicken kebab in Fallowfield) the poem was very relatable. The first half ends:

Back in our silences and sullen looks,
for all the Scotch we drink, what’s still between ‘s
not the thirty or so years, but books, books, books.

And that’s what I thought it was. Books. I was really obnoxious back then. Now I know it was actually ‘looks, looks, looks’.

And those looks get between me and others still, but I notice less. I’m not asking the world to love me anymore. I know that I did before and it was hard facing the news that the world would rather shag someone else instead.

Back then, the smallest of remarks could send me into a spin. Now I laugh when a beautician assumes by my appearance that I’ve had children. Lots of them.

No, I’ve destroyed this body myself through gluttony and a reluctance to move. Decades of eating, and more recently, drinking my emotions gave me those stretch marks. No child is at fault. Don’t blame the kids.

So although I am inspired by those who are positive about their bodies, I don’t think I can ever take it that far. I can only be myself and I am regrettably self-aware. The biggest curse of all.

Why I got assessed for dyspraxia as an adult – update

Author on bench with back to camera

I was assessed for dyspraxia in 2016, aged 33. I wrote a version of this blog post several months later to reflect on why it mattered to me. I also wanted to share the perspective of an adult diagnosis because it was something I wrestled with – would it be worth finding out and what difference would it make anyway?  I’m sharing it again (with an updated perspective) to coincide with the 30th anniversary of the Dyspraxia Foundation –  they are a small charity doing excellent work in helping to raise the profile of dyspraxia/DCD and without them, I may not have pursued my adult diagnosis.

I support the Dyspraxia Foundation with a monthly donation and I will be giving them a little extra in support of their campaign to raise £1000 for every year of their existence. The money they raise helps them to deliver the following vital services:

  • A dedicated helpline service manned by trained volunteers every day of the week, answering approximately 10,000 enquiries each year
  • A range of guides to further enhance others’ understanding of what dyspraxia/DCD actually is, how it can affect daily life, and how it can be a strength rather than a weakness
  • Conferences and workshops which are often the first time that a person with dyspraxia/DCD has met someone else with the condition
  • A network of local groups throughout the UK – creating conversation, friendship, reducing isolation and offering a safe and supportive environment, online and offline.

You can give online to support their work or you can also text DYSP30 £5 or £10 to 70070 to donate £5 or £10 to their #Dyspraxia30 appeal.


It’s something children have, right?

 

If you are reading this as someone who was assessed as an adult, or as an adult who thinks they might have dyspraxia, then like me you have probably found a lot of the information available for the condition is targetted at children. This is something the Dyspraxia Foundation try to address although it does make sense when you think about it; parents and schools mostly clock when important milestones are missed or when a child struggles with some activities much more than they do others.

However, there is a noticeable imbalance of information available for adults with dyspraxia even though it doesn’t go away, you just learn to manage it. Learning to manage it means different things dependant on when you were diagnosed. For example, you may see difficulties as shortcomings or weaknesses. They may be the cause of unkind treatment for which you blame yourself. Having an assessments helps you understand your world and explain it to others. However, the volume of materials targetted at children made me reluctant to pursue a diagnosis at first. I didn’t see the point and I thought it was too late.

I didn’t know what dyspraxia was until my twenties. I certainly hadn’t heard of it when I was at University. I immediately knew this was something that made sense to me but I couldn’t easily see how the NHS would support a diagnosis at my age (they typically don’t) and taking it further almost felt like an indulgence, after all, I had got this far. However, I couldn’t put it to bed. I needed to know more as it was beginning to help me to make sense of my past.

Childhood

 

Since being assessed, I have spent a long time thinking about my childhood in the context of having dyspraxia, and there is no denying that being a child makes the condition especially tough. Mostly because as a child you do not have any agency, and with dyspraxia, you do not even have agency over your own body.

It is hard to explain how everyday things terrified me as a child. Someone throwing a pen for me to catch would lead to me panicking.  I was scared of sports to the point of obsession. For a short while, I tried. I wasn’t overweight then as I am now and couldn’t quite understand, perhaps unkindly, why I was the slowest runner in the class. You notice these things at school, these things matter. I was painfully shy and awkward then, and after time, the mickey-taking from other pupils and teachers alike made P.E. the root cause of twice-weekly dread.

I managed to convince a newly qualified teacher to not force me to attend the swimming classes each week at Clapham Pools. Instead, she let me sit beside the pool as she tested herself on Spanish vocabulary. I think that’s why I take Spanish lessons now.

My next teacher wouldn’t let me get away with this, and she was probably right in hindsight, but she lacked compassion. She was a stickler for neatness in everything and I was scruffy in every possible way.  I looked dirty and I often was. M sloppiness extended to my untidy handwriting and my unwillingness to take part in physical activities was an irritation. I was hypersensitive and none of the above was endearing.

Most other teachers had a different take because in spite of these shortcomings, I was clearly a very bright child, and for most of my teachers, that was enough. That was plenty. They had other children to worry about. Teachers frequently congratulated my mother, the school cleaner, for having raised a model student – quiet (withdrawn), polite (because I lived in constant fear of being forced to catch something) and curious (slightly obsessive).

My first obsession was history and The Tudors especially. When aged seven, our class was asked to write a few sentences about Henry VIII, I wrote the equivalent of an essay. At Assembly, I had to read some of my work aloud, I was confronted by a sea of crossed legs and bored faces, propped up by one hand. I quietly read my work, all the time looking at the page when I was interrupted by my teacher from the back of the hall. ‘No, this isn’t right. Mary – speak up. Mary knows lots about The Tudors. Mary, tell them the names of his wives, in order and what happened to them.’ I obliged and answered more questions, slowly growing in confidence and pride. I wasn’t exactly cool.

I suppose a lot of teachers put my timidity down to being a  bookworm (I actually wasn’t – there was an assumption I read all the time which simply wasn’t true – I am a competent reader but I struggle with reading at length and lose concentration). My handwriting was incoherent, but what does that matter – surely computers were the future. And so I was left to my own devices.

At home, things were different; I wasn’t an introvert at all. I talked incessantly. The youngest of four sisters I soaked up knowledge from those around me. Adults didn’t baby me. I watched old films and adult television. Home life wasn’t necessarily blissful, but school was harder.

I didn’t look forward to University and barely put any thought into where I would go, choosing the same university as my boyfriend at the time.

Hello, Manchester!

 

Everything aligned when I went to university on a social level. I embraced my independence, and I made friends instantly. I spent the next three years making friends and living.  I wasn’t shy at all (who knew?!) but I was in the habit of poisoning myself with too much booze, getting obsessed with boys and spending all my student loan on nights out, but I lived those years. And if I fell over a lot, well, I was often tipsy…

I do wonder what difference an assessment would have had during that period of hedonism. I wasn’t present enough for anyone to notice but had I started university with my dyspraxia diagnosis, I think I would have engaged with it a lot more. The concentration difficulties, the struggle for comprehension, reading slowly and short-term memory, were too much for me to confront alone when I was experiencing some form of arrested development.

I barely engaged in academic life. I found lectures hard. I made many notes but couldn’t make sense of them afterwards. My mind wandered, and I soon went in less and less. About half-way through I may as well have been studying my degree remotely. Somehow I scraped a 2:1, despite procrastination and entire spent nights awake doing everything that bit too late. I still have nightmares about having failed after all or having my degree taken away from me. In fact, these nightmares are now so detailed that I often forget I have a degree at all.

The gender myth

I recently read an article about the late diagnosis of women with autism, and in it, the National Autistic Society found that twice as many women as men were undiagnosed. The reason I mention this is that dyspraxia is often thought to be more common in men, but there is no reason to explain why this is. There is one theory, and I subscribe to it, that women are less likely to be diagnosed.

There were so many symptoms in my childhood. The physical ones were evident – my fine and gross motor skills remain very poor. I have no sense of spatial awareness – my inability to judge distances makes crossing the road very stressful, and I don’t understand the physical space I take up (which being a fat adult can be especially problematic). My problem with speech, my memory and my difficulty with sequential thinking should have been apparent as a child. When I was being assessed as an adult, I was told I was ‘textbook’.

Yes, awareness of dyspraxia is an issue, but I cannot help but feel that if a boy had exhibited the same problems with coordination and visible stress when asked to participate in sports, some concern would have been raised and they may have worked out what the problem was. There are gendered expectations and for that reason, girls can get overlooked.

Anxiety

I am not sure it is a ‘chicken or egg’ situation but I can see how dyspraxia exacerbates anxiety. It certainly knocked my self-esteem; being back to front and inside out nine times out of ten is exhausting.

I am 35 years old and I am unable to tie my laces, use cutlery or ride a bike. I mix words and sounds up. I struggle with speech. My short-term memory is poor. I am not always aware of the space I take up. I hear how a word should sound but I cannot say it. I have no spacial awareness and Google Maps doesn’t always help me. I’ve turned up to social occasions in tears because I got lost and then I got angry with myself for being useless. I struggle with personal grooming and so it takes me much longer to get ready than most. I’m that annoying pedestrian in the street who gets shouted at by an angry commuter – you know, the one that suddenly changes direction and causes the world to end as a result. I have a limited sense of distance and space, and will always wait to see my good friend, ‘Green Man’ before attempting to cross roads (that’s just good sense though surely?).

Low self-esteem and high anxiety have made some personal relationships tough and I wouldn’t do my twenties again if you paid me. It took a long time for me to realise there was something more to all of this than being a rubbish person.

Not finding the words

I found myself getting increasingly frustrated as I mixed up words or couldn’t remember them at all. I was worried about how I was being perceived by others – for being judged as inarticulate or possibly ‘thick’. I shied away from public speaking, and I had to work twice as hard to keep on top of things – often taking work home and never feeling able to entirely switch off.

I wanted the assessment to understand myself in the same way that knowing about my anxiety had been a huge relief.

Most importantly, it would give me words to explain all the differences I felt. The way simple tasks just took longer and tired me out. I wanted people to understand I wasn’t intentionally scruffy. My desk is messy for a reason. I fall up the stairs, I spill coffee everywhere and wear my clothes inside out because of something. It isn’t a quirk.

Getting assessed

I thought long and hard about this as it isn’t something you can afford to do with discretion unless you can pay for an assessment privately. I couldn’t. Instead, I looked into it with my HR department, and they referred for evaluation. Not all employers will do this.

I did deliberate about whether this was the right thing to. What if I wasn’t dyspraxic? Maybe I have the symptoms but not the condition. Maybe I have no excuses, and I am just crap after all. Or if I am, will people think less of me? Will they find out about my anxiety disorder? Who will I have to share all of this with?

I didn’t really find peace with all of these worries and concerns. I just knew that I needed to know and that I would work everything else out.

Happy now?

Well, yes. I’ve been very candid about it, and it feels a part of who I am now. I am proud of how I’ve coped with it and how I found strategies for dealing with dyspraxia before I even knew what it was. It has helped my self-esteem and it has given me the confidence to try new things and not care so much about failure.

People’s reactions are interesting. I think some of those close to me realised quickly that it made sense, it explained things. For others, I am not sure it matched the version of me they know, and so it has been more of an eye-opener. A lot of people tend to tell me they’ve suspected themselves or people they are close to as being dyspraxic. And there are others who I suspect don’t know why I even bothered to find out.

Raising awareness

I would like there to be a greater understanding of what dyspraxia means and how it can manifest itself in different ways. How the combination of the many ways it can express itself can drive you to distraction. How it can rob you of your confidence or willingness to move outside of what makes you comfortable. How it can lead someone to spend their life avoiding things that are, without explanation, so much harder than they should be.

I’ve joined the Dyspraxia Foundation, and I started this blog as a way of starting to do something useful with this new information. If you are interested in hearing about the ways in which dyspraxia can impact a person at work, please read their very useful guide, Working with Dyspraxia – a Hidden Asset.