Signs of Dyspraxia/Aspergers in Females and My Own Quirky Examples

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I’m approaching this post from my point of view of being female with Dyspraxia and Asperger’s – a high functioning (sometimes) version of Autism. It’s really difficult to tell where Dyspraxia ends and Aspergers begins as symptoms overlap regularly and quite often people have both. Here are some behaviours which are related to Dyspraxia and/or Aspergers that are only obvious in children/teens/young adults if you know what to look for. Clearly no one in my life new about these and were just totally perplexed as to why I was so different, including myself. Hopefully this post will make things easier for parents who are confused or anyone who can relate personally.

Skipping the crawling stage

Lots of babies with Dyspraxia/Autism/Developmental Disorders go straight from sitting and reaching out to walking. It’s like we just don’t have that crawling instinct in us so we just copy what we see: Lots of people walking around! I used to pull myself up and wobble my way around the room going from couch to couch at a really early age. My parents and Paediatrician thought this was astonishing progress but it’s actually more of a red flag of a hidden condition.

Sensory issues (SPD) with food, clothing, noise, light, touch or movement 

This can just be Sensory Processing Disorder in-and-of it’s self but I find it’s often related to Dyspraxia and/or Aspergers. Sometimes it’s the texture of the food that the child might struggle with or too many flavours in their mouth at once. I used to eat everything on separate fork-fulls as it never occurred to me to mix them but I didn’t mind if different foods touched on my plate.

I was highly sensitive to the texture of fabric (and still am). Anything vaguely rough i.e. not soft, used to make me itch and squirm like crazy! Also sitting on cheapo carpet for story time, I’d have to sit on my coat. I also need weight on me to feel snuggly and calm. So even in the middle of Summer I can’t sleep without a duvet on me. I remember my Mum telling me every time I’d be upset I’d wrap myself in this really soft and (more importantly I realise now) rather heavy blanket, and I’d instantly calm down. That way I could ‘feel the outside of my body better.’ Google ‘proprioception’ for more on that.

As a kid high pitched noises or unexpected alarms were totally debilitating for me. Even slightly high pitched sounds cause me physical pain so I have to wear noise cancelling ear plugs to concerts.

My eyes have always be light sensitive so these days I have transitions lenses in my glasses and a great pair of sunglasses that are polarised and anti-glare.

I’m mostly under sensitive to touch and movement, meaning as a kid I loved my hair platted, brushed and cut but I know some kids find this painful and stressful even when it’s done gently. This also worked both ways so my version of tag usually involved clumsily and accidentally rugby tackling people to the floor – oops!

I loved swinging, bouncing, jumping, rocking motions, anything with speed and movement. I found it really exciting and calming in equal measure. I’ve gotten more sensitive to movement as I’ve gotten older though.

Questioning and Analytical Personality

From a young age, maybe seven or eight, I started wondering about EVERYTHING. What is the meaning of life? Why can’t we feel the earth spinning and why don’t we get dizzy? If we evolved from Apes will we evolve into something better than human or is this as good as it gets? If fate existed then who would decide it? Why do different people around the world all think that their god is the real one? Are there aliens out there and would they think that we were the aliens if they saw us? I’d contemplate these things with my best friend for at least half of playtime each day and then we’d go home and ask our parents these baffling and sometimes amusing questions.

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Issues with Co-ordination, Balance and Spacial Awareness

Our bodies internal compas and steering tends to be badly calibrated, making it hard for us to do things like throw and catch a ball, ride a bike and swim. I only learned to ride a bike when I was 7 and my mate lent me hers (mine still had stabilisers on) and pushed me down a gentle grassy hill. For once, momentum worked in my favour. When I’d try to throw a ball my hand would open to late and I chuck it at the ground in front of me. Same for catching, I’d react too late because my brain couldn’t process the fast movement and it would just hit me.

I tend to use the word ‘proprioception’ instead of ‘spacial awareness’ as your body’s proprioception helps you judge the objects around you, your own limbs and how much space both things occupy and the space between them. A person who cannot automatically judge this will end up bouncing off things, walking into things, falling over things, tripping up over their own feet or throwing drinks at their face when drinking from an over-sized (and therefor unfamiliar) cup etc. I get bruised daily from having poor proprioception. I also do not possess the natural reflex to put my hands up when I fall or if someone suddenly throws something at me, so I’ve amassed a rather wonderful collection of scars.

Difficulty with Spontaneous and Unstructured Play

At the age of around three Mum dropped me off at a play group to learn social skills and how to exist separately from her. The assistant suggested I might like to go on the slide after me pointing at it while jumping up and down enthusiastically the moment we got there. When my Mum came to pick me up it turned out that’s ALL I had done. For an hour. My Mum was a little annoyed that the assistants hadn’t suggested to me that I do something else because she knew that it wouldn’t naturally occur to me, even though I was surrounded with other things to play with. I hadn’t talked to any other kids either, again because it hadn’t naturally occurred to me that this is what I was meant to be doing, simply because no one had explained this was an option.

No Idea of Boundaries or What is Unsafe

Oddly enough, considering my lack of communication with little kids my own age, I would enthusiastically say a loud “Hiya!” to any adult within 12ft. As I was getting older I started acting fearlessly when it came to jumping off stuff that was too high or climbing giant trees or standing up on swings and wondering if it might be fun to let go of the chains (it really wasn’t). Oddly enough, I was stupidly scared of going on fairground rides with the theory that if I couldn’t cope with it, I’d essentially be stuck on the bloody thing until it finished. Having tested this logic a couple of times as an adult – with literally sickening consequences – I now stick rigidly to it!

At the age of 10 I got chatting to one of the keepers at the zoo we were visiting who was around 18 I reckon. When I say chatting, it was more strolling and chatting to the point where my parents where tagging along behind. My ability to make this guy laugh and to ask questions that he actually found interesting, both pleased and worried them equally and I think they were very glad that he was a zoo keeper and not some random man! I think this behaviour also ties in with being able to communicate/feeling more comfortable with people who are much younger or older than ones self.

Not Getting the Natural Rhythm and Impulse Control in Conversations.

I would butt in constantly because a) I would mistake someone taking a breath or pausing to think, as them finishing their sentence. b) It would take me so long to process what someone was saying and think of a response, that they would have moved onto another topic. I’d suddenly blurt out (but actually I’d been waiting for a gap in conversation and missed many of them) what my thought on their previous topic was and they’d look at me like I was nuts. c) I’d be constantly saying “Oh I did that as well.” or “Well, when I did that…” not because I was self absorbed but because I was delighted to have something in common with some one (proving I was normal) and I really empathised with them. Not the best idea though when someone is trying to tell you something important that’s bothering them or what they did well etc.

Sometimes I blurt out something which is meant as a compliment and certainly sounded like it in my head but seems to get lost in translation between my brain and my gob. As a teen I enthusiastically said to a lad I fancied “Your hair gel makes you look like Sonic The Hedgehog!” I thought Sonic was The.Best.Thing.Ever at the time but everyone laughed and the poor kid just looked mortified. Oops!

Something that amuses me is when I’m deep in thought with an imaginary scenario going through my head I might end up saying a bit of it aloud or doing the corresponding facial expressions. I swear my imagination has a life of it’s own and not just in my really vivid hyper-real dreams. Something that drives my bloke mad is when I don’t answer him because I’ve thought the answer in my head so strongly that I’m sure I have said it aloud already.

I tend to take people with dry humour very literally, even though I’m quite dry humoured myself. With expressions that I might not have heard before, it never occurs to me that it’s a tern of phrase and I take those literally as well.

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Memory and Concentration and ‘learning difficulties’

I’ve put ‘learning difficulties’ in quotes because I think a lot of people with Dyspraxia and/or Aspergers are usually fairly bright but struggle to learn things because of short term-memory, recall, sequencing and concentration probs. As a kid in class I would have this whole amazing adventure in my head and I mean an epically long adventure. What completely escaped me was the fact I only had just under an hour to get it down on paper so a) It should be a manageable length and b) I should start writing as I went along, not think it all up first and then start writing five minutes before the end of the lesson. When these two things were explained to me I attempted some vague time management but again and again I disappeared into my own thoughts where it was like time stood still.

My recall is useless, it’s like I know I know something but I can’t figure out where my brain has stored that piece of knowledge. In Junior school my hand would fly up and I’d look chuffed that I knew the answer but when the teacher picked me I’d just sit silently with a very confused look on my face as the answer slid away the more I tried to think of it. I confidently told the teacher once “Give me a minute, It’ll come back to me.” and everyone laughed, apart from the teacher who frowned and told me “Question and answer time doesn’t work like that as you well know!” I didn’t know or should I say I hadn’t remembered how structured it was. After that, I didn’t put my hand up again until I was well into high-school many years later.

When you notice absolutely everything it’s hard to filter out what’s not relevant to be able to concentrate. The sound of the clock ticking, the smell of someone’s deodorant (or lack of it), what the weather is doing outside, how tight the neck of your top is, what you’d like for dinner, that joke about the llama you heard last night, why is there a stupid silent ‘gh’ in words like ‘night’. Ah, right, what was I doing again? Why is this in my hand? Ooh, I can use it as a clue!

Sequencing (thinking straight) and Logic

My thought processes seem to go from A-B-D-A-E-D and then No! Now it’s ALL slipped away! Those logic questions like ‘If Suzanne had 12 apples and she shared 3 with Bobby and…” Bloody Suzanne and her frickin apples! Why’d she have to share them unevenly anyway! Even as a teenager I would physically have to arrange my pens and pencils into groups as if they were the apples (using them as counters essentially) to be able to answer these questions. My logic does not work in a straight line. I’d think myself into a loop with the same two bits of the equation going round and round yet I’d manage to miss out the third part entirely and I’d go straight to the last bit, then be utterly confounded as to why my answer was wrong.

In high school I started making notes for maths. Notes which looked nonsensical to anyone else. I was utterly delighted when the teacher said we had to show our ‘working out’ to show her our logic. I made my copious notes in a circle all around the sum and crossed out each one as I used it and proudly handed it in. Her face was an absolute picture! It turned out I had to show my working out in a way that everyone else worked things out or even that part was considered wrong as well. I learned how to write my notes to keep track of all foggy, sum related thoughts on a separate piece of paper, then I’d neatly write down my fake ‘working out’ in the style that they wanted to see in my text book. This meant I took three times as long to do every sum/problem and never finished the page, making the teacher think I didn’t understand the questions in the first place. *face palm*

Not the case at all. I found a lot of questions in high school – not Science or Maths related – to be mind numbingly boring. Not the actual subjects just the textbook questions so I liked to ask my own, which drove teachers crazy, partly because they didn’t always have the answer and partly because they had a lesson plan to follow. I’d also just go onto the next page of questions which I didn’t realise were supposed to be for the next lesson. Seriously though, four painfully simple questions (where the obvious answers were in the first four paragraphs of the text) were supposed to keep us busy for an entire hour. Oh my gosh the boredom!

A lot of the time I loose the point of my sentence and then just try to wing it but end up coming to an increasingly quieter waffle that just trails off. It helps to quickly loosely plan the structure of my sentence before I open my mouth when I’m around new people. Sometimes when I’m listening to someone, by the time they’ve come to the end of their sentence, I’ve already forgotten what they said at the beginning. Sometimes when I’m telling someone something I don’t start at the beginning of the sentence so there’s no context to what I’m saying. I tend to recognise that specific confused look on people’s faces these days and quickly (almost as if it’s part of the original sentence) add on what should have been said at the beginning. This makes me backwards like Yoda talk.

Sequencing issues also apply to the order of letters in a word and the order of the words in a sentence, which is why it’s taking me forever to write this post! If I left this utterly unedited, some words would be unrecognisable and some words would be left out and some words would be repeated twice etc. As well as everything mentioned in the paragraph above. It would read as jumbled up as I think basically.

Just not getting stuff

It used to be really difficult for me to weigh up new situations. I don’t naturally have the ability to asses what I’m supposed to be doing or how I’m meant to be doing it straight away. I can’t tell you how many times I’ve just blundered straight into a situation and someone has said “Excuse me! Can I see your ticket?” and I’ve looked at them blankly, having walked right passed a very obvious illuminated ticket office. I remember being totally sensory-overloaded one summer after being stuck in a huge, noisy, meltingly hot cue at the post office, only to find out it was the wrong cue! I was told I’d have to cue up all over again in the right one. I tried to reason with the lady that it wasn’t fair but ended up bursting into tears. It was a really good lesson though as it taught me to just pause for a moment and assess situations first before throwing myself into them. I’m actually really quick at assessing stuff these days because of that.

After saying all of this I need to state that Dyspraxia/Asperger’s does not effect intelligence unless there are other developmental problems.

Honesty, Naivety, Tactlessness and Manipulation

My honesty meant that I was blunt to the point of being tactless. Often if someone was avoiding saying a certain thing or they’d messed up in some way and were trying to wriggle out of it I’d assume that I mustn’t have understood the situation properly (pretty average occurance for me tbh) and so I’d say “Yes, you did! You told her that blah blah…” or “I thought you knew you were supposed to do blah blah because I was there when they told you to.” That made me really popular in the first years of high school!

My natural in-built honesty meant that up until I was around 11-12 it never occurred to me that people lie. They lie to make themselves look good, feel better, to get ahead, to stir things up or simply to see if you are daft enough (or naive enough) to believe them. I was. Even aged 12-13 I believed that if someone was your friend then they wouldn’t play a joke on you or manipulate you because that’s a mean thing to do and friends are never mean. Wrong! It would take someone else to notice what was going on and point it out (practically bang me over the head with it) before I’d realise. Luckily this stopped when I got friends who were more mature and kind and realised that I had ‘difficulties’ in certain areas that they shouldn’t take advantage of.

Oddly enough I became a really quick study in reading people as I got into my mid-late teens in order to fit in and appear ‘normal’. I think this is why Dyspraxia/Aspergers is so overlooked in females as we can be great chameleons at blending in enough to pass for being Neurotypical. I’d never just go along with stuff to be popular but I was good at staying quiet and observing peoples tone of voice, or little gestures or how they would back track and subtly change their meaning if what they were saying wasn’t going down well with others. I started to notice people’s pride and the need to be popular and the fact that they were more prone to agreeing to do something if they thought it was their idea in the first place. I also learned that people like people who listen and give just enough advice that’s helpful but doesn’t entirely go against what they ultimately have already decided to do anyway.

I was becoming, without realising it, a little manipulative. All those years of studying human nature to be able to understand it was meaning I was now able to predict it and use it. I’d say 80% of the time it was just to talk my way out of forgetting something yet again or to hide something quirky thing about myself or to pretend I’d listened to or understood what was being said but the other 20% was to get my own way. I found it easier than people respecting me enough to take my opinion seriously, especially when I was struggling to explain it properly. Plus, when I couldn’t mentally keep up with group conversations to be able to give my input at the time, manipulation was a handy short cut to steer things the way I chose later on. I was only strongly presenting the pro’s of what I wanted to do and none of the cons but still kinda manipulative.

Turns out I was so emotionally guarded (to make sure I didn’t get my very fragile emotions hurt), sarcastic (sometimes I was being serious), ironic (again thanks to my many observations of situations), totally calm in stressful situations (naturally detached) that my group of friends thought I was actually kinda cool. Bahaahaa! No. Apparently I was also cool because they (mistakenly) thought I didn’t care that much about social norms and had a strong sense of self. It was more that I just didn’t get them. Like when someone dies and you say “I’m sorry” to the relatives. My reply was “I’m not saying sorry. It’s not like I killed them!” Dark humour right? Nope. I did know exactly who I was but that was someone who was clearly from another planet. I had been getting the distinct message from teachers and society in general that I was wrong in some way, which was upsetting and so confusing. It was due to my amazing friends and in-part to my parents unconditional love and patience that I managed to cling onto my sense of self. Although I have to say, some days I was genuinely praying for the spaceship that must have dumped me here, to come back for me!

My naivety still effected me into my mid 20’s as a travelling temporary Admin Assistant where I wouldn’t be able to tell if groups of people were just humouring me and letting me hang out with them, as they felt too mean to ignore me. I would think I was genuinely friends with these people until others strongly hinted otherwise.

Empathy and Highly Sensitive Emotions

A lot of females with Dyspraxia and/or Aspergers feel emotions really deeply so things like a situation being unfair, involving us or another person can really bother us. When we empathise with some we really empathise with them to the point of feeling upset because they are and crying and we might end up crying with them! It took me all of my teens and 20’s to realise that even nice people don’t always behave in a fair way though, and just because you may have massively gone out of your way for someone many times does not always mean that will do the same for you.

Me: You didn’t do that really important thing for me that you said you would.

Friend: I was a bit busy with, er, something.

Me: But I did that thing for you that time, even though it was really inconvenient for me, which you knew.

Friend: I didn’t make you do it, that was your choice.

Me: Whaaa?????!

I realised that however that a) It’s not fair to expect everyone to be as emotionally involved and intense with everything as you are, including your friendship b) There is such a thing as being too nice to the point where people take you for granted or even take advantage. c) Self respect comes from setting boundaries with yourself and others. d) EVERYONE makes mistakes or forgets things, or stops paying attention, it’s human nature and it doesn’t mean they don’t care. However, it’s good to keep in mind just how regularly this occurs as they might be trying to tell you something!

Coping with Change and Unexpected Situations

I’m still getting there, day by day. However, I no longer have a melt down over takeaway orders being wrong – even if I’ve looked forward all week to the one thing they’ve forgotten to include. Recently my bloke suddenly suggested we go to a Thai restaurant in town which we’d literally just read about and which closed at 11.00. It was 9.30 so we had to go right away. I was in my PJ’s and in relaxed slob mode but I calmly said “Yeah let’s go”. I acted (notice I say ‘acted’) like a serene in control person the whole time I was putting together my outfit and tidying my hair and applying concealer all within a 20 minute time slot before the cab arrived.

That would have been completely out of the questions 6 months ago. The mere idea would have been ridiculous to me because I would have immediately felt anxious. Anxious because I hadn’t expected and therefore gotten my head around what was happening. I’d have been in the totally different mind set of “Of course I can’t.” It also helps that I have a little black dress which looks great with leggings and black boots. Simple.

It’s also about things not happening. Looking forward to going clubbing all week and then people saying they’re not in the mood. I’d be gutted. I’d planned it. I’d gone through scenarios in my head about it on a loop. ALL WEEK. I’d skip straight over distraught onto determined – determined that the person would go! Now I realise that’s selfish and slightly insane. I deal with unexpected situations a hell of a lot better these days. It’s all just part of life and no big deal most of the time. The unexpected can even be a good thing. That Thai place was great!

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I hope this has helped people to feel a little less weird or to be proud of how weird they are. Remember that your neuro-diversity means you are just different (to Neuro-typical people) and not inherently wrong. And as comedian Francesca Martinez says “What the F**k is normal anyway!?”

Chrissie

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My Weird & Apparently Perplexing Disabilities & Conditions

Theres a lot of information to convey here so to stop you getting bored and to stop me getting totally lost in what I’m saying, I’m just going to list them, tell you when I first noticed them, when and who I tried to get help from and whats being done about them as they all kinda weirdly link up.

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Hyper-Thyroidism

In my early 20’s walking home from work ever night, I’d tell myself ‘I just need to make it to the next lamp post’ over and over until I got to my front door, I’d be that exhausted. It wasn’t until one day in work when I was slurring my speech, couldn’t walk or think straight that I (and my lovely colleges) got worried. I booked an appointment with my GP and was running late, he phoned my landline and when my Mum answered he began to question her about me possibly ‘burning the candle at both ends and partying, like these young one’s do.’ My Mum was gobsmacked and told him a) I was an adult and therefore he was breaking patient/Dr confidentiality b) I was a sensible young woman and if that if partying was the reason for the exhaustion I could have figured that out for myself and c) he was being very assuming, patronising and arrogant and the least you expect of your Dr is for them to believe you when you are clearly ill! He did a simple blood test and confirmed I had an under active Thyroid. Sadly, that was the simplest and quickest diagnosis from then on.

Massively Swollen Puffy Ankles and Feet

Aged 12 I went to my GP one summer and showed him my giant elephant ankles and feet. He immediately told me that I was obviously having way too much salt. I told him my parents brought me up to eat moderately healthily and I didn’t add extra salt to my meals and never ate ready meals. He told me to reduce my salt intake ‘drastically’. Years later in my early 30’s I mentioned to my mate that “My body just doesn’t sweat” so when I’ve been walking in the sun for around 40 minutes I feel nauseous, have a headache and feel really quite feel faint. He immediately looked concerned and asked if I was getting enough salt as you need a certain amount for your body to start sweating and to cool down so you don’t get heat stroke, which I’d been getting! Also the body needs a balance of salt, sugar and water (those electrolytes in those isotonic drinks everyone buys these days) in order for the body to function properly. As soon as I increased my salt intake I stopped getting the terrible swollen ankles and feet which had dictated my miserable fashion choices every summer for the past 20 years and I had lots more energy as I wasn’t dragging around pounds in water weight!

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Food Intolerance 

By the time I was in my mid 20’s I figured something must be wrong as was I tall and slim, yet I had a very distended round belly, like two thirds of a football. I looked four months preggers! I went to see a nurse and was told “Be glad your tall and slim in most other places, we can’t all look like a model.” and sharply asked “Is there anything else or is that ALL you came to see me for?”

A few years later I figured out it must be a food intolerance from several articles I’d been noticing in various magazines and went to see a GP. She agreed and told me to do a food elimination diet. When I asked for more information she looked at me like I was daft and said “You cut out most foods and then reintroduce them slowly. Anything else you need to see me about or is that it?”

It turns out after paying privately for a blood test along with a thick info booklet and food planner, that I’m intolerant to wheat and gluten and dairy and eggs and that symptoms aren’t always evident for up to four days. There is no way I’d have been able to figure out all of my intolerance’s and kept up a healthy diet on my own! Symptoms include bloating, facial redness, water retention especially in the face and stomach, skin itching, temperature fluctuations, constant thirst, headaches and stomach pains, sneezing, blocked sinuses/excess snot (sorry!) and fatigue. I’d had all of these all of my life (when I was a kid it was like I had the flu constantly. If I made it to school for four days in a row, it was miracle!) but the symptoms were never connected to food intolerance or even to each other.

Dyspraxia

Had this all of my life, first noticed by my parents and primary school teachers but not by my Dr who I’d been under since I was born! Teachers asked my parents, my parents asked my teachers, both were utterly baffled at my way of thinking and doing things. When I was 28 I read an interview with the singer Florence Welch who talked about Dyspraxia and it was an utter revelation!

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I asked a GP to get help with this aged 30. He was sympathetic to the amount of stuff I’ve always struggled with and amazed I hadn’t been diagnosed with disability as a teenager or at college. He astonishingly referred my to a Neurologist. These referrals are like gold dust! I then got passed between three of them because non of them dealt with Dyspraxia and didn’t really care or know who did. Five years later, yes FIVE, I’ve gotten a referral to a mental health team with maybe a years wait list to then get referred to some kind of Physiologist, hopefully the right kind.

Sensory Processing Disorder (SPD when your brain over or under processes stimuli)

A large amount of people with Dyspraxia also have SPD. I along with everyone else just thought that I have very particular quirks and like things just so, however as a kid I’d get really upset easily if I was too cold, too hot, the food ‘felt funny’ in my mouth, clothes were too scratchy or it was too windy etc. I have more quirks these days but get less annoyed/upset because I realise it’s just my sensory shit and I can find ways around it or ways to cope with it. Unless things I’ve been expecting and looking forward to something and then it suddenly changes, which really really upsets me as I feel sort of lost and bewildered. Lack of ability to adapt to new things is very common for people with autistic spectrum disorders. SPD and Dyspraxia kind of run parallel and overlap a lot with spectrum disorders you see so some people who have Autism/Asperger’s also have Dyspraxia.

I’m so glad I found blogs written by Dyspraxic people mentioning SPD because I then found an amazing Facebook group for SPD. We aren’t as unique and weird as we were made to feel at all and actually have masses of sensory quirks in common.

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I asked my Neuro (who denied this condition even existed and said ‘It’s just one of those things, your just being too sensitive’) to refer me to an Occupational Therapist (OT) for help with my SPD and Dyspraxia. She turned out to be clueless as to the term SPD, didn’t seem to understand what proprioception was (the feeling of where the outside of your body is compared to the air around it) or interpception (your bodies navigation system and steering and the way it interprets your senses. The ability to sense the position and location and orientation and movement of the body and its parts. Responsiveness to external stimuli; the faculty of sensation) because she kept just describing me as ‘clumsy’ which is ridiculously simplifying the problem and ignoring so many things which can be done to help with all of that, I later learned. Her advice with my severe memory problems (to the point I feel like I’ve got early onset Alzheimers a lot of the time) and wonky concentration was to print off a child’s work sheet from the internet suggesting I group things together that I’m trying to remember. Gee thanks, I could not have done myself – oh wait….

Demyelination (when the Myelin sheath which protects your nerves from damage is attacked by your immune system)

This was discovered by mistake when I had an MRI looking for reasons other than Dyspraxia why I might have had Dyspraxia all of my life as my Nuero thought there must be something else causing it. He happened to discover Demyelination which I can’t have had all of my life because it usually develops over time and from the age of around 20. It could be MS it could be something else. Whatever it is, my immune system is basically attacking healthy cells thinking they are invaders, causing them to wear and then to get damaged and then scar so the nerve signals get weaker or disrupted/distorted.

Hypermobilty – when joints are too flexible, which can lead to joint and muscle pain, joint stiffness and accidents and Arthritis, the auto-immune kind oddly enough!

A large majority of Dyspraxic’s are hypermobile. I’ve been having problems with my joints since I was 14 when one of my knees sublaxed, meaning the joint almost comes out of place but manages to just hang in there and in my case, rock back into place again. I was sent for an X-ray and told I was fine.

This happened three more times by the time I was 20 and it had gotten to the point were I was no longer able to run without my knees suddenly collapsing and I was in mild pain all winter. I complained to my rather perplexed GP and I got sent for another X-ray and again told I was fine and ‘it’s just one of those things’.

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So at the age of 33 I asked for a referral from my Neurologist (utterly incompetent as a Neurologist but he’d do any referral, just to get rid of me I think because I had ‘so many unusual difficulties’) to a Physiotherapist. She was a good laugh and patient with me but couldn’t understand why certain exercises hurt my joints, she suggested I wasn’t doing it correctly, then when she realised I was she just looked confused. Again I got the usual ‘just one of those things’ shrugs.

I asked for another referral to a different Physio “Someone who understands a lot about hypermobilty because my last Physio seemed to be utterly unaware of the condition/disabilty somehow.” A few days before my appointment I learned from the Physio’s secretary that my Neurologist had referred me for weaknesses in my forearms and wrists, not mentioning hypermobilty at all. Utterly irresponsible! If the secretary hadn’t have checked (after remembering my previous request) I’d have possibly seen a second oblivious Physio who, again, could have done more harm to me than good.

So this new Physio Dave was amazing, he not only understood Hypermobilty completely he was also familiar with Dyspraxia and two other related disabilities, one of which we both agreed I most likely have. He gave me brilliant (and realistic) daily exercises to improve my balance, co-ordination, control, strength and stamina. He’s referred me to a Rheumatologist who should be able to tell if I have Ehlers Danlos Syndrome and what type.

My GP (who was surprisingly familiar with EDS) asked me why I wanted the referral “because there’s no cure anyway.” I actually had to explain that if I’d have had a diagnosis years earlier I could have gotten help with so many health problems (which weren’t taken seriously) over my life, which have needlessly gotten worse and done damage so surely it’s better late than never?! Plus, EDS effects the heart so surely that should be monitored at least!

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Ehlers Danlos Syndrome

A certain amount of people who are hypermobile have EDS. It’s simplest definition is faulty collagen, meaning it can be dense in some areas and sparse in others like Swiss cheese, so totally uneven and far too stretchy – Jim Carey’s face has nothing on me! This can effect connective tissue (hence the hypermobilty), your heart valves (mine were faulty when I was born), your digestive system (it’s common to have intolerance’s to wheat and dairy and for it be slow in general, which I have), to have an underactive Thyroid, teeth and bone weakness (my teeth are terribly weak and wear down easily), visible small blood vessels like thread veins and bulging blood vessels (both of which I have on my legs – sexy), uneven collagen (my cheeks are like a relief map of a tiny hilly area, my gums are so fibrous that general anaesthetic is useless, my boobs are way too heavy for their size and I had terrible stretch marks by the time I was 14, I have some scars which are sooo soft as are the palms of my hands and feet incidentally but other scars which are way over the top compared to the initial damage), difficulty absorbing and using certain vitamins (I can’t absorb Vit B12 and need injections instead). There are literally no other symptoms left, I have them all. If these were Pokemon I’d be well chuffed.

Four things to add context….

Each referral to a new ‘specialist’ (I use this term loosely these days) takes between 3 and 12 months of waiting on a wait list. So nothing happens quickly.

Fatigue is increadibly common with people who have Dyspraxia and Hypermobilty because we have to work so hard just to do the simplest of things and my Demyelination also causes terrible fatigue especially in the heat. Oddly this has never been acknowledged by any of my GP’s a) because my Nuerologist hasn’t bothered informing them and b) they all consider it to be just a side effect that’s not serious, even though extreme fatigue (to the point where I sometimes have to be helped out of bed in the pm and with getting dressed) is the most debilitating thing I struggle with, at some point every single day and the reason I can’t work.

After asking a wide range of people in various forums and reading a lot on this subject, it would seem that a lot of people with hypermobilty, dyspraxia, EDS, Asperger’s and Autism seem to be genetically prone to food intolerance. Food intolerance is now thought to be auto-immune related (as our immune system reacts largely to the health of our gut). It’s fascinating (but rather logical) that what we digest can effect the auto-imune system, which in turn can effect the brain, which in turn goes full circle and has physical effects again!

I’ve changed Neurologists. My new one did lots of tests, said he was going to send me for more and actually seemed to understand the terms and disabilities I was referring to – hurrah! Shit, I forgot to ask him to inform my GP’s that my extreme fatigue is very real and why. Looks like I’ve got a phone call to make.

It’s utterly exhausting researching my conditions and deciding on which referrals I need and caring for myself while I wait.

Zzzzzz

Chrissie

Don’t Judge A Book By It’s Cover Even if It’s A Loud One

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A close family member said to me recently “Oh god, you will never believe what Samuel L. Jackson wore the other day.” Intrigued I asked what. “A white suit! I mean talk about ‘Ooh everyone look at me!'” “Maybe he just likes white.” “Oh come on! Of course he just wanted the attention!” “I think he probably gets enough of that just from being Samuel L. Jackson.” “No! No! It’s the same with that silly Bonham Carter women who dresses like an 80’s bag lady.”

This made me think for a moment before I carefully replied “I wear some fairly alternative stuff sometimes and have my hair bright colours, do you think I’m some attention seeking missile?” “Obviously you want people looking at you.” “Ha! Whaaat!? You think that’s why I wear stuff that I just happen to love? To get attention – seriously?” Slightly more uncertain this time she replied “Well…I’m not saying you crave the attention but you are obviously really confident to wear things like that.”

This made me really sad because I realised she had no clue about how I feel around 70% of the time and had somehow missed that I’ve battled with confidence issues my whole life. There are some days where I would gladly steal the invisibility cloak from Harry Potter so I could get around unnoticed…But I’d still be wearing teal dip dye jeans and patent 18 hole Dr Martens underneath though.

I also got to wondering wether other people judge me as quickly as she judged the Screen Shot 2016-01-03 at 16.57.58celebrities. Over the years I’ve known several people with alternative styles including my boyfriend who used to wear a mixture of punk and hippie clothes. It certainly wasn’t for attention, in fact if they had tried to change their style e that would have felt fake to them.

I have to point out that I don’t have anything against people who like attention and want to make a statement and I don’t think my relative does either. She’d just prefer they did it in a ‘suitable way’ whatever ever that is. Personally, if someone wanted to walk along the street singing and balancing a pineapple on their head (I have witnessed this) it wouldn’t bother me in the slightest.

Actually I should say it wouldn’t rile me because she seemed genuinely annoyed that these celebrities were dressed like this. Full of scorn and judgment yes, but also pretty miffed. I think I know where it stems from but I’m not going to go phsycho-analysing my relative right now.

Basically it made me think two things….

Wouldn’t it be great in 2016 if we could put aside our own emotional baggage and hasty assumptions and judge someone on their actions as a person, rather than some animated mannequin?

Wouldn’t it be great in 2016 if we try our best not to worry about other peoples shallow assumptions and just dress how ever the hell we want – even if that means accessorising with a pineapple.

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You aren’t alone if the words ‘animated mannequin’ are now playing on your mind and giving you chills lol

Chrissie xx

Learning To Recognise & Truly Feel ALL Of My Emotions

I’m typing this tipsy – not because alcohol is my essential coping mechanism or because it’s fun to obliterate a bad memory or feeling but because I simply enjoy getting rather tipsy. Four years ago and for the first time in my life I learned to drink for fun. We all naturally lean toward some kind of copying mechanisms whether it be demolishing a big block of chocolate, shopping for yet more things we don’t need or fishing that packet of fags out of the bin that we said we’d quit. It could even be by being overly bossy and controlling of people or situations.

From age 13 I made it my aim to drink a litre of strong white cider every Friday. That was my day which kept me going through a week of repressing my feelings. That was when I stupidly thought that I could really feel my emotions and let loose. I was doing that but I wasn’t processing them or understand them unfortunately. It was more “Let’s have a laugh and forget about all of the crap – woo whoo!”

Forward a year age 14 and now I’m on to drinking quart bottles of vodka because the cider just isn’t doing it for me anymore. I have to drink it quickly because it has to take effect but then I have to sober up somewhat because I need to get the bus home at at 10.00pm.

I realise now I was always blocking out negative comments from others, negative feelings about myself and generally not allowing myself to feel. Maybe I naturally felt too much as a kid and decided it was sort of scary. Maybe I was made to feel by a relative that someone else was in greater emotional distress so I was to play down any anxieties as if they were of less importance. Maybe I felt I always had to be in control so that I didn’t cause a scene.

Basically the reason doesn’t really matter. It was the fact that by my teens I would do anything before I would actually feel anything. By my early 20’s it was cigarettes for when I was stressed. Sex for when I wasn’t feeling in control (“well I’ll soon change that!”), beer to let my ‘real’ personality out (witty but pretty wild) and dancing while loosing time in alcoholic oblivion so that all I was thinking about was the beat and the base.

What happens when the club shuts, you’re on your own, you’ve run out of booze and fags and you’re starting to feel again? I mean you are sobering up and that uneasy, lost, bewildered feeling is starting to creep back in.

Luckily by my late 20’s I had The Bloke. He ‘left me’ to go to the 24/7 supermarket, he hadn’t dumped me in the way that I misunderstood. Afterward he scrapped me off the floor and basically rescued the sweet, kind, closed off, bitchy block of stone that he’d been going out with for 3 months.

That’s when I learned to actually feel my emotions again.

I say feel – not deal with. Two very different things those.

I was raw and adorably childlike yet frustratingly childish in my neediness.

It was a long difficult road but fast forward 5 years and I like embracing my emotions now. Emotions fill us with joy or sadness. It doesn’t matter – what matters is that we have them and we should embrace them as that’s how we can learn to cope with them – even appreciate them.

Now I’m in my mid 30’s I don’t automatically decline a hug when I’m sad because “I’ll loose it and start crying” because that’s ok. I don’t have this awkward pretend empathy because I don’t know how it feels to go through a particular emotion. I don’t have a silent rage inside of me anymore or a feeling of unjustness that I need to burry.

I feel everything and it’s freaking fantastic – even the really crappy bits.

Guess what? I’ve lost control quite a bit and done some ugly crying (you’re crying for god sake, who cares whether you look pretty) and I’ve had mini emotional meltdowns where it’s all felt too intense. Embracing your emotions really takes some getting used to! However, I’ve not completely fell apart. I’ve not been disowned by everyone (one person yes, but that says more about them than me).

Even if I was left with no one and had to start all over again it would have been the right choice. NEVER EVER FEEL LIKE YOU SHOULD BURRY YOUR FEELINGS DEEP INSIDE. We are humans. We need to feel. This is what separates us from robots. It’s what makes us truly unique. It’s okay to cry and let it out. You don’t need to be ashamed of this either. If you learn to feel then you learn to accept those feelings and you learn to cope with them over time. They are part of you. The joy and the despair – it’s all you. It’s what makes you you.

Love and giant bear hugs.

Chrissie xx

P.S. A few days later – I learned some rather alarming news about my health in a series of letters from my Neurologist to my Dr that I’d requested (for ATOS) and I looked up the three (yes three) conditions online on very specific professional sites . What I found out really worried me but I was busy reading the specifics of each one and the fact that one is very rare and I couldn’t find a reason for the other erm..Then I found that two conditions can at least be slowed down by drugs – phew! Then I was late and had to rush. I didn’t process it properly and spent the next few hours calmly explaining it my loved ones and looking on the bright side. Then A couple of days later I burst out sobbing for around three hours because what the bloody hell this is some seriously scary shit! It was classic – I did exactly what I warned everyone against. I guess it’s hard to see the wood for the trees sometimes. So yeah, I need to head the advice I’ve written above a lot more basically. 

 

December Monthly Round Up

My family and friends have opted out of appearing on my blog, so that they won’t be affected by the subsequent fame that would of course ensue, so there are no pictures of christmas gatherings to entertain you with. I’m sure you are just, oh, so saddened to here this :0)

This month I’ve been…

Watching…

Scrubs and falling for Dr Cox all over again.

Myself and The Bloke watched a wonderful film called The Machine about a man who’s daughter is physically ill. He intends on building an artificially intelligent android and uploading his daughter into her. The AI develops advanced emotions and a subconscious. The mans government boss has other ideas and wants to use her as a weapon along with the war veterans he’s modified. Luckily the modified Vets also have other ideas. This film is really quite beautiful with subtle heartfelt dialogue and room for the characters to develop. There are the obvious parallels to be made with Blade Runner in it’s themes, characters and score but this is a much smaller independent film and I thought it was better for it.

Wearing…

My Fraggle Rock tee that I treated myself to for xmas. I also bought a white faded Count Duckula tee (I’m all for being retro) only to find it’s not faded or retro looking at all which makes it look rather childish. I’m going to die it light grey like the other one and hope it subdues the colourful print – eek! I’ve also got reviews of some gorgeous jewellery coming up in January so keep a look out for those.

Feeling…
Absolutely chuffed to bits with my new laptop! It has a very similar operating system to The Blokes computer so I’ve customised it and figured it out pretty quickly. Gutted that I got the wrong game for The Bloke for christmas! I swear I picked up Grand Theft Auto and asked the assistant if it was a follow on pack or a full game just to check, then I took it to the till and paid for it. I opened the bag a day before christmas to wrap it and realise I’d actually bought Far Cry – WTF!!! It’s going to be fun taking that back now the 28 day return time has past. I’m trying to get help from an occupational therapist by going through my local councils services instead, as I’m not keen on the Neurologists almost blasé suggestion of taking a sample of my spinal fluid like it’s no big deal. I’ve been waiting for around two years now to just get some suggestions and excersises from an occupational therapist to make my memory and coordination problems (that I’ve had all of my life and that haven’t deteriorated) easier to cope with – that’s really was all I was asking for in the first place.

Eating…

Boxing day dinner with roast and mashed potatoes cooked perfectly by The Bloke. A giant Thorntons reindeer in milk chocolate that should last me around 2 months of cheat days! I’ve taught myself how to cook (yes, using paste from a jar counts) a fantastic Massaman stir fry. It tastes so creamy thanks to full fat coconut milk and crushed cashews and is dairy free.

Using these beauty products…

My Proactiv+ starter kit worked really well and cleared up my skin completely but it was a bit of a shock to receive an email from them detailing three large payments I would be making that month to them for full sized products because I’d supposedly signed up to an ongoing and very expensive plan with them. I don’t think so!

Soak Yourself patchouli and vetiver soap, combined with Good Things daily exfoliator and a light moisturiser – maybe from Lush? – should do just as well.

Discovering…

That you have to read the small print carefully and make sense of cleverly worded jargon and beware of any type of plan. I’ve learned how to write good blogger pitch emails which means I’m able to collaborate with some wonderful brands and designers. I’ve also discovered that Jack Daniels, Dr Pepper and fresh lime juice tastes wonderful.

I hope you had a guddon’ and even if you didn’t, I’m wishing you a really wonderful new year full of surprises of the most awesome kind.

Chrissie xx

Are you being too nice?

Most of us are taught from an early age that we should be nice to people and not deliberately exclude anyone. When we grow up however, we have to WANT to be generous, helpful and sympathetic to a person, otherwise trying to be ‘nice’ can come across as patronising or obviously fake.

On the other hand…

Being overly nice isn’t going to get everyone to like you and it can easily come across as desperate or even stalker-ish to new people!

With friends and family if we are always overly generous and forgiving with everyone, eventually, even the most well meaning of people will start to take advantage of our nice nature.

How many of us have been long time friends or partners with a seemingly outgoing person who’s always in the middle of some drama? It’s easy to become the person who just provides them with constant attention and an ego boost, which gets thrown back in our face the minute we stop.

Being too nice can mean we are accidentally flirting! If someone fancies us or is having a bad day and feeling unloved and then we are suddenly really nice to them, they might easily take it the wrong way. Then what happens? We don’t correct them because we feel bad about being mean because we are too nice! Awkward.

There are times when our nice nature can breed our own resentment. I know we shouldn’t just do a favour to get one in return but when we knock ourselves out to be considerate and helpful but don’t get that same level in return, it can be rather depressing. Which leads to one of these conversations “You are so ungrateful! All the things I do for you…”

We need to understand sometimes other people are too busy to have the time to reciprocate or too stressed maybe to notice. It’s never a good trait to deliberately be a martyr and hold it over everyone anyway.

Still, constantly being, doing and thinking things for others – even with the best of intentions – can be exhausting and frustrating. We need to put ourselves first sometimes without feeling guilty.

Anyone else do some of these?

So the question is: Exactly how nice are we meant to be?

Food Intolerance Symptoms and Information

What Is A Food Intolerance?
The bodies immune system reacts to the ingredient/s as if it is an invader and puts all of it’s energy and resources into fighting off. An intolerance can also mean your body is naturally lacking a particular enzyme which is essential for digesting the ingredient. A perfect example of this is cows milk or lactose in all dairy. Food intolerance symptoms are much milder than an allergic reaction but if you suffer from many of them, it can still have a detrimental impact on your day-to-day life.

Food Intolerance Symptoms

Mild swelling, possibly around the nose and/or forehead

A red flushed appearance

Fluid retention often around the chin, stomach, fingers and ankles

Nasal congestion or runny nose.

Constipation (stomach/digestive system still feels and appears swollen after stomach muscles are clenched).

Stomach cramps caused by trapped wind.

Excess wind

Dihorrea

Lethargy

Mild wheezing/tight chest

Raised temperature

Constant thirst

Headaches

Spotty/oily skin breakouts

Joint pain/Back ache/Muscle pain

Mild itchiness and irritation

The most common food intolerance’s

Lactose

Cows milk (especially common in people of Oriental Asian decent)

Gluten

Wheat

Nuts

Sea food

Yeast

MSG

Sulphates (in tomatoes, mushrooms, red wine)

It might not be as simple as one of the obvious ingredients, it could be the lactose (milk sugar) in dairy. Which which is often used as a flavour coating for foods such as crisps and nuts. It could be the gluten used as a bulking agent and to bond together ingredients and to thicken most brands of soup. It could be sulphates in red wine or tomatoes, yeast in beer or MonoSodium Glutamate used as a flavour and texture enhancer in asian dishes, processed meats and some soups.Make sure you read the ingredients labels on EVERYTHING you buy.

Information and Resources

Symptoms can last up to 5 days and may not be immediately apparent.

Symptoms relating to each food intolerance can vary greatly.

It’s important to keep a food diary and a list of symptoms for the process of elimination. It will also help you later to recognise which unsuitable ingredient your food included if you eat it by mistake.

Make your pharmacist aware if you have a food intolerance as they will know more about medication ingredients than a Dr.

A good Dr should refer you to a nutritionist but unfortunately some Dr’s still consider food intolerance to be a minor problem, not worth their time. If this is the case there are now several companies which carry out blood tests against a wide range of foods and will give you a clear diagnosis. York Test offer two phone consultations with a nutritionist, they test your blood against 113 foods for a reaction, provide a food diary and lots of info. Plus, if your test shows up negative to everything they offer a full refund. I personally found them to be fantastic.

Dietary/digestive aids can help greatly if your food intolerance is mild. I find Acidophilus Complex by Viridian really relieves and even prevents some of my symptoms. I take one capsule with a problem meal and then one the next morning with a light breakfast. Obviously do read the ingredients and instructions before taking any supplements. If you can’t digest dairy you may need a complex containing a probiotic (naturally found in milk, yoghurt, cheese) to introduce good bacteria into your gut.

Important!

If you discover that you react to wheat and gluten and get regular stomach cramps and the runs, you may be coeliac. This is more severe than food intolerance and if overlooked, can cause long term stomach and digestive problems. Consult your Dr and/or ask to be referred to a specialist or nutritionist.

Bloating, frequent dihorrea, severe stomach cramps and constant fatigue can be symptoms of Irritable Bowel Syndrome or the more serious Ulcerative Colitis. Consult a Dr immediately and ask to be referred to specialist.

My Story

I realise now that I must have had a food intolerances to wheat (however I’m not celiac – a gluten intolerance – which is more severe) and dairy from being a child.

I felt very tired with small peaks of energy in between my breakfast of cereals or toast, my packed lunch of sandwiches and my tea with a dairy filled desert.

At the age of 15 my ankles and feet started to swell massively because of the undiagnosed intolerance’s. My Dr looking rather alarmed told me to stay hydrated but cut my salt intake way down. This confused me as I had more of sweet tooth. I cut down on salt even more. Nothing changed. At age 33 I’ve just learned if you don’t have enough salt you can’t sweat (which I didn’t) and you can’t cool down (which explains why I’d quickly feel sick and faint all summer) and your body has no choice but store an excessive amount of water ie water retention. Ta for that Dr.

At age 15 I had fairly bad acne and rosacea (a deep red flushing of the skin). I was prescribed pills twice to no avail. The second time my Dr (the same one I went to with my ankles) told me “If this doesn’t work, something is wrong. I’ll do tests and send you to a nutritionist.” Oh, how I wish I would have followed it up. I was a lazy teen, armed with concealer who was scared she’d be told to cut out the ready meals and McDonalds.

Age 20 (an adult bear in mind) I asked to see a Dr but only got to see a nurse. She felt my incredibly swollen stomach and intestines, then confirmed I wasn’t I wasn’t pregnant. Well I knew that! She then looked at my skinny frame and said “We can’t all look as skinny as models. Is that it? Are we done?” I was so astonished by her ignorant dismissive attitude that I actually apologised for wasting her time!

Age 30 I had read enough food intolerance articles in women’s magazines to be certain I had one. Determined this time, I deliberately made an appointment with a female Dr. I told her about my symptoms and said I was sure I’d been struggling with food intollerance for years and that I’d cut out wheat & then dairy for a month each but to no avail. Her advice “Go on a food elimination diet.” “It’s where you cut out most foods from your diet then re-introduce them one at a time.” That was literally her only information and advice on the subject. I find that really irresponsible as it could have taken 6 months maybe and I’d be going without important nutrients that support and stabilise the body. Plus she never mentioned symptoms can take days to appear, what they are or that I might have multiple intolerances. Why not just refer me to a nutritionist if she couldn’t be bothered?

Luckily, a week later York Test kits were recommended in a magazine I was reading which proved invaluable. Then a lovely woman at Neal’s Yard Remedies matched me with the perfect digestive aid by Viridian an eco friendly company selling natural products which are vegan friendly. It has made such a difference!

Don’t give up, persevere!

But Which Developmental Disorder Do I Have?

At last! Hurray! I’ve been wondering why it’s been harder for me to do simple everyday tasks, when other people just seem to be able to get on with it, without thinking, all of my life. Now I know!

Ok, so that came a bit out of left field didn’t it – although if you follow me on Twitter maybe not – so where to start…

Two years ago I read an interview with Florence Welch (of Florence and the Machine) in which she explained that she had Dyspraxia, a developmental disorder. She explained the symptoms and it was like she was describing what it’s like to be me, better than I’ve ever been able to. It was a revelation – some kind of resolution. Sorry, couldn’t resist.

After researching Dyspraxia online for a while I managed to find a comprehensive list of Dyspraxia symptoms in adults or what I prefer to call quirks, as they really do shape your character and not always in a negative way as people naturally assume. I also read that ADD (Attention Deficit Disorder) can often go hand in hand with it. After reading through the symptoms of both disorders I was in tears. Not because I was upset but because finally, after 32 years, I completed understood myself. I released that I’d never hbeen stupid, or lazy, or careless, or ‘off with the fairies’ I simply had an impairment. I was driven, a lateral thinker, creative and I’d been coping with something that should have been diagnosed in childhood by my Pediatrician.

How the quirks of a developmental disorder (which I’ve been officially confirmed as having) effect me personally:
I’ll put ways of coping into

Gross motor co-ordination skills

As a kid I never figured out the whole crawling thing. I’d reach out to be picked up. I got bored and as soon as my legs where strong enough I’d stand up, cling onto the sofa and lock my knees. When we went out my parents put rains on me as a toddler so that when I frequently tripped up, frequently, I’d just dangle from them and not hurt myself.

Throwing as a kid involved the ball going straight up in the air, sometimes landing back down on my head or even behind me! The other day I tried to throw a ball back over a fence to someone but it hit a tree branch above me and landed neatly in between my feet. Catching involves me reacting way to slowly and grabbing at the air as the object hits me in the face. I’m actually laughing out loud as I type this.

Ridding a bike without stabilizers seemed really scary until, one day at the age of seven, I was too embarrassed to use them any more and asked my friend if she’d let me borrow her bike and if she’d shove me down a small hill. It worked!

I trip over thin air.

If I’m walking slowly I can’t walk in a straight line, unless I pick up speed and momentum then it’s almost like a fun game trying to steer my body around obstacles successfully.

I have very little spacial awareness. I can’t tell you the amount of times I have genuinely walked into a door… A shelf…A fence…A tree.

[I naturally tidy up and remove any obstacles in my living or working space as I go along, which really helps.]

Fine motor co-ordination skills

I hold my pen like my life depends on it when writing. If I try to loosen my grip I drop the pen.

My left hand is good for dextrous tasks and my right is good for more forceful tasks. I write left handed, use my phone write handed, play squash with both which ever will get the best shot. I’m not ambidextrous though, that would be using both hands equally for every task. I prefer squash to tennis as the ball bouncing off the wall gives me those few more seconds I need to judge where the ball is going.

I randomly drop things. My brain forgets it’s still holding something if I’m per-occupied.

[When I’m holding something delicate I don’t chat or let my mind drift. I concentrate solely on that object.]

I didn’t have to cope with tying shoe laces until I was about eight. Thank god for velcro. By then I’d already picked it up from watching others.

I like strong tea and wring out tea bags by squishing them between two teaspoons. Sometimes I accidentally flirt it right across the kitchen. This makes me laugh – every time.

All of this spilling means I’m often sticky. Wet wipes are my friends.

It’s impossible to apply mascara without getting all over my eyelids.

Speech and language

If I’m very tired, or have low blood sugar or I’m just really chilled out and relaxed my speech gets a little slurry. I’m sure people who have only met me during these times must assume I’m constantly drunk!

I have trouble with sequencing and when I’m enthusiastically make a point I’ll be incredibly articulate but get stuck in a loop with my point or loose my place. Sometimes I’ll start my sentence with a prefix and then put it into context at the end. Yoda like I sometimes speak. I write like that when blogging, then have to edit it ;0)

Every now and then I CAN END UP TALKING LOUDLY WHEN I’M FEELING A BIT HYPER OR REALLY HAPPY! or almost in a whisper for no apparent reason.

When I’m a little tired or distracted words I want to use are always just on the tip of my tongue such as grapefruit, wardrobe or duvet. As are peoples names, even my friends. I actually get really articulate when I’m angry. What’s with that? Haha!

Perception

I find it hard to track things moving really quickly so if someone tosses me a set of keys say, my initial reaction is to duck and cover.

I’m rubbish at gauging the speed and distance of cars. If I was in a hurry to cross the road, I’d almost walk into the back of the car before it had fully passed. Sure way to get your foot run over, which I did. Now I’m overly cautious, really overly cautious. When drivers pause for me or flash their lights for me to cross or don’t indicate or drive right out of side roads at speed it really throws me off.

I dislike loose clothing and feel ‘a bit lost’ inside it. Unless it’s really warm I like tighter fitting clothing on my back and upper arms. Hey, everyone likes being hugged, why not by your clothes? I hate high neck lines and jewellery that’s close around my neck as it makes me feel a little claustrophobic. Hey, not many people like being strangled right?

I can hear a high-pitched noise from really far away but have to ask the person next to me to repeat themselves as there is too much background noise ‘crowding’ my senses. This one really confuses my bloke.

I can be fairly light sensitive and would constantly wear shades if I lived in a country that wasn’t overcast for 75% of the year.

My sense of smell is pretty bad unless I take a moment to close my eyes and block out any distractions.

I find it hard to judge, the weight and amount and taste of ingredients especially in relation to other ingredients, so cooking is always an experiment. The amount of times someone has had to wrestle a bottle of salt or oil from my hands. Which leads me to pouring and not massively over pouring purely by mistake.

I used to have an appalling sense of direction until I became a temp age 21 and got used to following my trusty A-Z.

I didn’t learn my left from my right until I went to high-school – even now sometimes I have to pause for a moment.

I often have in mind what date and time I’m meant to be doing something important but not see the significance of it in relation to today’s date, then suddenly randomly realise ‘OMG that’s tomorrow!’ [writing everything down on a paper wall calendar and crossing off each day is invaluable.]

Learning, thought and memory

I virtually have no short term memory. I can glance three or four times at the date or time in the space of a minute because I’m distracted and it’s not sunk in. I can forget what day it is and suddenly remember a couple of times during the day. I can put something down and immediately forget that it’s there. I can start a sentence and forget what I said at the start a sentence and forget what I said at…

[Keeping everything tidy by giving each thing a permanent place to live and then returning it there straight after using it, makes finding things so much eaiser. I even got a special mention by my boss once for being so efficient and having the most organised work space!]

Poor sequencing causing problems with maths and spelling. My maths improved slightly when I moved out of home and had to do my budgeting on the go in the supermarket. [I’d by my usual items so that I had a fair idea of the price anyway. My spelling has improved immensely because I blog frequently.]

[It has a lot to do with practicing how to access the relevant knowledge and trying not to loose your place while processing it, rather than simply learning correct spellings and timestables. Although, basic learning does require your short term memories to sink into your longer term memory, which I seem to struggle with.]

[People just don’t understand: It’s not always about taking more time to learn a skill, it concerns whether I have the capacity to implement that skill effectively when I have learned it? With certain things I have to admit that I simply don’t have that capacity.]

Understanding commands and following instructions. Two at a time please, any more and not only will I not remember the others, I’ll also get flustered about the first two as well.

Teaching by telling, showing, doing. I’ve written them down in the most effective order. I once came home from brownies with the resolute idea that I had to ‘decide which badge I wanted and make it by next week.’ In reality the brownie leader had simply mentioned that next week we would be working toward earning our brownie badge of choice. As a kid and a teen it was like my brain absorbed instructions/information and then flipped them around, shook them about like a snowglobe, added some sprinkles and spit them out, only vaguely resembling what they once were.

I either struggle really badly with concentration that it’s almost mentally painful for me or I’ll get so completely absorbed in a task I’m enjoying that I’ll loose all track of time. [Thank goodness for To Do lists and scheduled reminders] I remember in junior school I could easily think up an entire story in my head with an opening, journey, character development, plot twist and epic conclusion. Then the teacher would say “Five minutes writing time left everyone.” Yet I’d only managed to write the first sentence. I’d get so lost in my own thoughts, you see. I suggested once “Look, why don’t I just tell you the story, it’s awesome, you’ll love it!” which didn’t go down too well, I remember. [I’m so much better now because I’m aware of it and I’m strict with myself and plan my time.]

Often when I write/type things quickly either miss words or repeat the same word twice twice. If I’m overloaded or nervous I easily up jumble the sentence in my words ;0)

Emotion and behavior

You know when you’re a kid or a teen and you’re hanging out with your mates and discussing what possible trouble you could get up to next, well that used to be fun but slightly stressful for me. “Right, we have decided – finally – that we are doing this.” Then I’d pipe up “But I don’t want to do that.” “Christine! We have spent half an hour trying to figure out what to do and you’ve hardly said anything. Now, you speak up!? Where have you been!?” The truth was I had spent the time trying to get a word in and then miss-timing it so when I did manage to get my point out it was irrelevant or seemed almost random. That intermingled with wondering things like if penguins had the choice, would they choose to wear jumpers?

As far as my teenage judgement skills went, I’d often hear people say “You always have to take it that step too far don’t you.” Oops!

I’m not great at entering new situations, unless they are heavily sign posted, and being able to just know what the hell I’m meant to be doing. If there’s some – anyway – I can end up making an arse of myself, I’ll manage it. I’ve learned just roll my eyes and shake my head a little and accept it with grace and humor. As a teen, not so much. [These days I do pause upon entering a new situation, just to take stock of it and compose myself, which really helps.]

I’m a little like this in social situations as you will probably know having met me or read previous posts on here. I’m very blunt which some people find refreshing, others bitchy and some find it plain hilarious. You know the US saying “That sounded better in my head”? Honestly it did! Haha!

I’ve always been a little impulsive with my decisions my moods and my likes and diss-likes. They are ever changing in little ways that most people wouldn’t notice unless I bother to vocalise them. So quite often I don’t bother until I’m sure I’m sure. Or I’ve changed my mind at the last minute. I never do this with friends who I’ve made plans with though, ever.

As I’m writing this I’m working through the list of symptoms for dyspraxia and developmental disorders as a guide to jog my memory. At the bottom it says ‘tendency to get easily frustrated’. Well hit me with a shitty stick. Obviously battling with my concentration etc. ALL OF THE TIME to do certain (supposedly) simple tasks, does make me a tad ‘frustrated’? I don’t throw things across the room anymore though. I do slam down what I’m holding every now and then while going “Aaaaaagh! for f**K sake!” Mostly, I just take a deep breath, roll and drop my shoulders back then put on my determined face and try again.

[All of these traits can be managed to a certain extent by me having some calm down time to process everything and to relax so I don’t get overwhelmed. Best example: After working for three days I often won’t be able to sleep until around 4:00am because my mind is still buzzing even though I’m exhausted. Imagine having to concentrate extra hard with everything you do, which uses up all of your mental & emotional energy. But with a lot of sleep and a calm day in between I’m recharged and good to go again!]

I hope this long list of my very specific weirdness has been of some help to people or at least of interest, please let me know. Everyone with developmental disorders, even one’s similar to what ever the heck mine is, will experience things a little differently from each other. Have some quirks but not others or with varying degrees.

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Slipping through the net

My parents did bring this up with my pediatrician throughout the 80’s and 90’s: My total lack of spacial awareness and lack of co-ordination and concentration. My difficulties with absorbing information and maths and English. His response was “Children develop at different rates. She’s fine.” Although, this is true in a wider sense, I and therefore my parents were really struggling. My teachers just kept on asking my parents what was going on, like they were qualified to know! However, the Dr did send me to a speech therapist, who had a strong posh London accent! My very Northern parents nearly had a fit when we were walking down the road and I pointed out “a big larry” rumbling passed. *repeated face palm*

To be fair ‘Dyspraxia’ was only recognized in the early 90’s but ‘developmental disorders’ (and various other terms for them) definitely had. At the very least the school should have picked up on symptoms similar to well known disorders such as dyslexia and/or Attention Deficit Disorder. Right, moan over.

Thankfully after asking parents of children and people in their twenties with certain conditions, it would appear that schools and colleges nowadays are more alert at noticing students difficulties and getting them support.

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What now?

A year ago I spoke to a GP who failed to tell me he was a locum and went off my misinformed guess of who I might possibly need referring to. After a six month wait I got to see a Neurologist who after a full work up and extensive questioning about my history, confirmed that yes, I definitely did have a developmental disorder which seemed similar to Dyspraxia and/or ADD. He couldn’t confirm the specifics for sure but he could confirm without a doubt that I had been miss-referred by the GP. Another six months, another Neurologist saying exactly the same thing. It’s now a total of fifteen months later and I’m still waiting to be referred to ‘the right person’. It doesn’t help that the two Neurologists share the same secretary who hasn’t managed to get a single thing right when arranging communications or appointments. Total fail, is an understatement.

After spending ages in forums I’ve learned the people who usually diagnose and offer help if needed are Psychiatrists, Psychologists and Occupational Therapists but I’m reluctant to make another suggestion in case, some one runs with it and it’s wrong again. Luckily I’ve found a GP who is fantastic! She’s charting my progress with great enthusiasm and interest. She put my mind at rest and told me that she would write a letter to the benefits agency so they can’t be totally dismissive now I’m back on regular signing.

While I was at the job centre I heard an employee referring to me when I walked by “Why does she need to see ***** (the person who deals with people who need more support). There’s nothing wrong with her!” Maybe to assuage their annoyance I should have limped in a circle while making random howling noises.

If anyone knows for an absolute fact which person is qualified to diagnose specific developmental disorders in adults, please let me know. It’s important because a) I’d like to know what’s going on once and for all so I can get some support b) I need to let the benefits agency know all of the specifics.