When People Still Don’t Get It After The 10,000 Time

Don’t say it, don’t say it, don’t say it….

When you have repeatedly explained your disability, symptoms and needs to someone, in every way you can think of and they still aren’t getting it.

Breathe….

I know it’s tempting to want to strangle them or head butt the desk repeatedly or scream – actually screaming into a pillow is very therapeutic – but eventually you will have to accept it and let it go for the sake of your mental health.

Not everyone’s empathy works in the same way. Some people will instantly get it (whether they have experienced it or not) simply by listening and taking the info on board. Some people need to have experienced something similar for themselves so they literally know what you mean. Others, because it is different to their experiences will never, ever be fully onboard. Even if you have gone through something and they were witnessing it, they still won’t have learned from that past experience.

Now, that’s not to say they don’t care and don’t want to understand. It is entirely possible for a person to sympathise, yet manage to say or do something ignorant and tactless purely by mistake.

I guess what I’m saying is don’t take it personally and don’t beat your head against a brick wall (metaphorically I mean) by thinking you can change someone like that and enlighten them. Some people are all ready at their maximum capacity for understanding and empathising.

Essentially at that point, it is up to them to get their own head around what you need and how you function. I’ve arrived at the conclusions at the start of this post. Trying to make someone understand, isn’t always worth your mental health or your relationship with them deteriorating. If they obviously care about you, sometimes you just have to accept that no matter how much they try, maybe they never will really get it and you have to be cool with that.

Chrissie

Mental Health Awareness Month Has Helped Me Admit To Having Anxiety For 37 Years!

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I thought I always felt anxious just because of life. From being a kid to a teen I was dealing with everyday racism; a family member with mental health probs where I’d get blamed for ‘setting them off’ to point where it was actually enabling them; it not being acknowledged by teachers or Drs that I had learning differences and was Neurodiverse; my Dyspraxia and Hypermobilty Syndrome were undiagnosed and symptoms ignored even after multiple GP visits; I totally failed both A-levels, because of other people’s errors/and then a huge chunk of my hard work work getting lost.

As an adult, when I’d go clubbing I’d either get totally ignored by blokes (even shoved out of the way) or they’d bluntly pursue me for one thing only. Such a head-fuck! In my second job a group of people who I thought were my friends were secretly excluding me from nights out and taking the piss behind my back for a year. Then in my very next job it happened all over again with three other ‘friends’ who, after six months started trying to manipulate and lie to me, like it was a game. I didn’t trust my own judgment or perspective on anything for several years afterward.

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I’d managed to cope with the anxious feelings by talking to (actual) friends and doing lots of fun stuff (everything to the extreme) and pretending all of this was just average daily life. I was ignoring that many things were way more difficult for me to navigate than my friends, for so many reasons I couldn’t understand and that I really wasn’t ‘fine’. Not remotely. When I got overly emotional I blamed the beer I’d drank or that I was over tired. Then, when I finally got diagnosed with several chronic illnesses I was obviously relieved but understandably anxious too.

Basically, I thought it’s not the mental illness ‘Anxiety’ if I’ve always got a reason to feel anxious right? Wrong!

Now, for the past few months the fact I have and have always had anxiety has become so obvious to me, that I can’t ignore it anymore. I was so busy coping with other shit going on, oddly enough, the importance of my mental health got shuffled to the back of my mind. I’ve been having the same two upsetting dreams about being left behind or ignored; I’m stewing on negative thoughts that I can’t shake and over-thinking people’s actions; lately I’ve had a constant wobbly feeling in my tummy that either ruins my appetite or has me running to the loo because the food has flown right through me.

I realise this current anxiety is down to several situations that have all collided at once. It’s wildly skewing my perspective, making me needy and fearful and even effecting my decision making and actions. One of those things was being unable to bear going through five hours of being on my own with my wildly see-sawing thoughts, no matter how much I distracted my self with manicures, makeovers, films and ice cream, they’d creep back. It resulted in me (at least once a day) phoning and/or texting the one person I was meant to be giving a little space to, and yet somehow, never mentioning my anxiety to them. Not once.

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Hopefully now I’ve recognised all of this and having talked some of it through with that person, the anxiety will calm down a lot. They were patient and surprisingly empathetic. It turns out that they’ve had anxiety for years, over-thinking and worrying about me! Since the talk, I’ve already stopped having the dreams so that’s a lot less mentally exhausting. I also feel very relieved, although still a little uncertain. They’ve also said it’s a weight off their chest, just saying it out loud.

There are still some incredibly important things up in the air but only time – rather than numerous phone calls – will reveal how those will work out, so I’ll just have to wait. Gosh, I’m crap at waiting….

Chrissie

 

10 Ideas for a Cozy Autumn & Winter

  1. Treating yourself to a new scarf, hat or gloves
  2. Hot chocolate or spiced tea/coffee in a big mug, which you can wrap both hands around
  3. A stroll around a big indoor artisan food or craft fair
  4. Fairy lights decorating a room, before and after Christmas
  5. A candle or perfume with a comforting fragrance
  6. Extra blankets and big cushions on the settee/bed to make a nest from
  7. A thick novel or biography which really engages you
  8. Donating food/clothes to projects and charities for people who are especially vulnerable around this time of year
  9. Big, hearty homemade stews or pies
  10. Having the heating automatically turn on for a while, just before you get out of bed

Chrissie

Care Co – 4 Week Resistance Exercise Plan

Pretty much every Physio I’ve seen has taken into account my little noodle arms, my easily misplaced balance and chronic fatigue and suggested I exercise with a resistance band. So when Care Co – who sell discount mobility aids – asked me to try out an item, that’s what I chose.

What is it?

The Exercise Band (£10) helps you to improve your muscles, fitness, control and co-ordination. You use it’s resistance and your own existing strength to build up more strength. This one smells strongly of latex and is a lovely teal colour. It has numbered positions on it to show you where to place your hands so you can increase the difficulty as you get past the first month.

How and Why?

The booklet contains a four week plan of six different exercises per week. It describes them with easy to follow instructions and illustrations (I’m not great at following instructions thanks to be Dyspraxic but I found this really simple) and also information on diet, general exercise tips and mental health tips, which I all found useful.

I have Hypermobity Syndrome meaning my soft tissue, muscles and joints are too stretchy, flexible and weak so I’d have really preferred the band had a loop on each end to help me hold it better (the booklet does mention consulting your GP if you have joint problems, right at the start). It does have enough room to wrap it around your hands though, if you don’t mind them getting squished, which I didn’t. However, I did need to wear wrist supports when using this.

I really enjoyed working my way through this plan and, I’m not going to lie, the novelty of this weird rubber band. It felt more like I was having fun rather than exercising but I also loved how structured the plan was as I have zero attention span and sporadic motivation, at best.

The Shoulder Press totally defeated me however, as I just didn’t have the strength in weak two or three or four to stretch the band over my head. I actually lost my grip at one point and smacked myself in the jaw! Hardly the first time that I’ve done this over the years btw. My Dad tried it, who stays fairly fit for a bloke in his Seventies and he got it to his jaw, the same as me. My bloke tried it who’s 6’2″ and 16 stone and succeeded immediately. So it is possible!

Can a giant rubber band really make a difference?

I didn’t have the energy to use this everyday but it certainly encouraged me to use it when I did have some. I’ve gotten better at the exercises with practice and my balance and co-ordination have noticeably improved – a big deal for someone with Hypermobilty Syndrome and Dyspraxia (which also effects co-ordination). I also noticed that in just four weeks my muscles adapted to the new kinds of movements.

My lower back was not happy at first but I realised it was because it was already incredibly tense from holding up my slightly floppy spine all day. A massage relaxed the muscles and I’d say the exercises will continue to make my core stronger in the future.

The band immediately highlights your strengths and weaknesses so, if like me, you have chronic fatigue and have to pace your workouts, you could just focus more on the areas that need improvement and reduce the amount you do in just four weeks with the areas that don’t need it as much.

Conclusion

Overall I found the Care Co exercise band to be fun, incredibly versatile, confidence building, easily transportable and storable but more importantly, something that gives me a reason to exercise, rather than an excuse not to.

Rating 4/5

Chrissie

10 Positive Things Dyspraxia Has Given Me

I know posting a diagram showing the problems which dyspraxia can cause might seem counter intuitive to the tittle of this post but I think it’s the easiest way to show you what dyspraxia actually is. Personally, I have less problems with fine motor skills and more severe problems with attention, memory, sensory issues and general spacial awareness Neurologists tell me.

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Before I knew what was going on with me I felt like a big dumb freak but my school friends always said “We love you because of the that you are, not despite it.” My boyfriend says the exact same thing to me. I’ve got much more confidence now and because I’ve been diagnosed later in life it’s meant I’ve had to develop my own coping strategies and I’ve started to realise that dyspraxia has shaped me in positive ways.

Creativity and a random jukebox in my mind

As my brain is always whirring around with random thoughts – especially at night – I can get really creative ideas and little revelations about life. If you follow me on Twitter you will be able to attest to this! It has also meant that I’ve never run out blog post ideas once, in the 2 and a half years that I’ve been blogging. Everyday I have a line or the chorus of a song going around my head in a loop for frequent periods. I’m reminded of some great songs from passed decades I’d forgotten about or had no idea I even knew the words to!

 

Determination

‘If you fail try, try and try again’ or in my case ‘and again and again…..’ this can be seriously tedious but having to persevere has made me really tenacious. Even as a child I was a really determined little thing who wasn’t easily defeated… or stubborn at all ;o)

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Humour in the face of adversity

If I’m in a shitty situation I will some how manage to find humour in it. Failing at hundreds of little things everyday since childhood I’ve experienced a lot of flippant negativity. This could have made me an overly defensive, bitter bitch but I chose to have fun with a self-effacing sense of humour instead. I don’t mean I’m putting myself down constantly to get laughs, I just manage to find humour in dodgy situations. Rather than getting embarrassed after opening a packet of M&M’s in such a way they fly all over the place, I’ll make a joke like “I just thought I’d share them with EVERYONE!” Having an unrestrained imagination helps to turn the mundane into the ridiculous and therefor amusing very quickly. Anyone else made themselves laugh out loud at their own thoughts, when on a crowded bus?

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I can be surprisingly focussed

I’m used to coping with difficult situations. Having dyspraxia means that I need to pause before steaming into something and instead I need to figure out a way to do it, that works for me. I’m constantly accessing situations. I’ve realised this has made me a lot more ‘on the ball’ over the years. For instance travelling to London and finding my connecting train to Cornwall in an incredibly busy station didn’t phase me. Wandering around a maze like hospital didn’t phase me. I got utterly lost like, and went around in a circle – twice – but I didn’t get stressed. Being in situations where things aren’t instantly and entirely evident to me is pretty normal. Confusing yes, but somehow reassuringly normal and not as stressful as it might be to someone who isn’t used to feeling this way. Also if someone has an accident I can suddenly become detached enough to think practically rather than panic, which is always good.

Breath and relax…

I’ve learned a level of patience I never thought possible. Loosing my train of thought right near the end of a sentence or a sum, tripping up over nothing, spending ages making a simple but perfect meal only to drop the plate face down on the floor, all of these things have and continue to test my patience but my gosh, have I developed A LOT of it! When spoilt princesses (the grown up kind) are having a full on diva fit because they didn’t get served at warp speed, I just roll my eyes. When someone is running late and everything seems to be going wrong I can calm them down, offer them a cuppa or a cocktail and say something daft to make them laugh because I understand exactly how that feels. I’ll admit sometimes you might here me yell “For f#c% sake!” and launch an object across the room but then I’m usually calm immediately after my therapeutic mini meltdown.

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I’m always organised

I rule at being organised. Ok so I’ve missed many appointments because I’ve got the order of the numbers in the date mixed up or lost all track of time because I’m hyper-focussed on Grand Theft Auto. These experiences and many more have taught me that Post It notes, reminder alarms (on my laptop, phone, iPod and paper calendar), nagging reminders from my boyfriend and Mum, simple but detailed filing systems and adorable stationary are essential.

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Lateral thinking

I tend to think differently than others and sometimes I can easily solve a problem which others have been struggling with, because it just seems obvious to me. Kind of like when an adult is over complicating something and being governed by the rules of how something is meant to be done, then their child looks rather non-plussed and suggests “Why don’t you just do it like this?” I’m sorry I can’t think of any specific examples here, every time I try to think of any, they opaquely half form and then float out of my head! That’s the nature of dyspraxia and I don’t mind about my mind ;o)

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Weeding out the dickheads

When you are a bit of a weirdo as I am – and I mean that affectionately – it doesn’t take long to realise who your friends are. They are the ones who don’t judge, don’t constantly make ‘jokes’ at your expense, who try to help without being patronising. Who don’t try to finish your sentences because you are apparently taking too long or simply talk over you as if you are a toddler or hard of understanding.

I’m tidier than a maid

Everything I own has it’s own place where it lives and it always gets put back there almost as soon as I’ve used it. When you put something down and forget why it’s not in your hand 30 seconds later, things need to be ordered so you can find it again. When you can scan a room four or five times for something that’s in plain site and still not see it, things need to be kept tidy. Floor space needs to be free from clutter so that I don’t trip over the stuff I’ve left there. I do hate homes that are so sparse and neat they don’t feel homely and I don’t have a compulsion to tidy, I’ve just learned how to make my space work for me.

People know where they stand with me

I’m honest to a fault. In my twenties as a temp I was so terrified of offending candidates for the position of ‘new BFF’ I over thought everything before I spoke and I mean EVERYTHING. It was exhausting and when the words did finally come out they sounded awkward and rehearsed. Nowadays I trust I’m not a total idiot or a big ol’ bitch and I just go with my instincts and “blah blah blah” away freely to everyone. Sometimes I sound a bit dumb, sometimes I’m really quick and witty, sometimes I’m a little tactless but it’s better than being anxious and paranoid. Plus 70% of people I meet tend to really respect my honesty and the other….er…..30% just need to lighten up a little, hehe!

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I hope this gives people an insight into this hidden disability in general (recognised in the 1990’s) or that it helps anyone who recognises some of the symptoms, diagnosed or otherwise.

Your comments welcome as always :o)

Chrissie

You Don’t Have To Hide Your Disability Or Condition

I have what is referred to as an ‘invisible disability’ because Dyspraxia is part sensory, part co-ordination and part comprehension/attention/memory related, it’s not always an obvious physical thing. Invisible Disabilities have their own problems when it comes to mingling with the general pubic (yes, I know). I’m going to list them because I like lists!

Lazy But Frequent Assumptions People Make About You

  1. People loose patience with you because they think you are being lazy or just taking your own sweet time.
  2. People think you’re just a big weird goof and make tactless observations or find it easier to avoid what/who they don’t understand.
  3. People scowl at you for using things/spaces for disabled people because you aren’t in a wheel chair or you don’t have a big neon “DISABLED” sign hovering over your head.
  4. People think you are acting precious or being a bit of a diva because you’re asking for special attention or more frequent attention compared to everyone else, who’s just ‘getting on with it’.
  5. People think you are being an ignorant arsehole. Yes, I just love loosing the plot of our conversation about your baby who’s just started walking (and who’s name I can’t remember) or literally bumping into you on the street when we’re the only two people on the pavement or over compensating and giving you a ludicrously wide birth (hilarious to watch apparently!) or struggling to join in a group conversation and then blurting out what I want to say when it’s not even relevant anymore.
  6. That you are just plain stoopid.

Talk About Your Condition/Disability! Tell people!

Don’t stop strangers in the street and regale them with details of your latest Dr’s visit like, but do get a dialogue going with people you are going to be spending a lot of time with.

In hindsight I would have found it so much easier in every college, every job and every new circle of friends I’ve made, if I’d have just had ‘the talk’ with them. Alright, back then I had no understanding of why I struggled so much but I knew which things I struggled with.

 

Yeah, I know it shouldn’t be up to the disabled person to set the standard and to feel like they have to justify their actions but explaining them might possibly make it easier for said person in the long term. Your disability shouldn’t be something you are ashamed of either.

Why Covering For Your Disability Won’t Always Work

I did an Office Administrator apprenticeship in my 20’s where I wasn’t much older than most of my colleagues kids. They noticed straight away that I wasn’t coping very well but falleveryone was lovely and they all really helped me. After a year the apprenticeship was over and I had to find a new job.

I fell in with a group of people that had started a month earlier and had bonded with each other quickly. After 6 months I still felt a little like I was ‘the new girl settling in’ and had an uneasy feeling I hadn’t meshed quite right with them. I automatically assumed it was down to my wonky social skills. Other people in the office had previously dropped subtle hints to me about ‘knowing who your friends are’ etc. but subtlety isn’t my strong point and anyway, these people were doing just enough to con me into thinking they genuinely were my friends. I think that they knew I was (intentionally) hiding something from them and something i_m_fine__by_halliova-d5jex0lwasn’t quite right, so they all thought it gave them the right to treat me like shit. I ended up leaving because of it, with no other prospect of employment on the horizon but that’s not the point. They were a bunch of knobs, obviously, but that’s not the point either….

Accept It And Own It!

The point is, I was trying to hide my condition in plane sight and failing miserably. One minute I was chatting a mile a minute and the next I was being evasive and not making eye contact. Fine not fine. Basically I was really embarrassed by my ‘weirdness’ and was bright enough to quickly be able to come up with a vaguely plausible excuse for every symptom, while t the same time feeling really rather stupid. We need to remember we aren’t wrong or broken, we just function differently. We shouldn’t be making excuses for being who we are or acting the way that we do regarding being different.Every single person on the planet has things they are good at and things they are crap at. The only difference with us is that we are more determined to give the things we know we’ll struggle with, a try in the first place.

If people notice you are acting or doing something that’s a little different don’t try to hide it,uniqueness-quotes or make excuses for it. People will see through you and wonder what on earth is going on. If you continue to behave like that, it’s pretty obvious people are going to get tired or even annoyed. It’s not fair I know but there you go. Either find a quiet time to have a casual chat or wait until someone brings it up and then just be open and honest with them about it.

 

Even if you only make your lecturer/manager aware so that they can make ‘reasonable adjustments’ to help you cope. For instance, amassing angrier and angrier warnings from your boss for being late, when you struggle with time management and planning might actually be avoidable! Maybe you could start and finish slightly earlier/later to avoid rush hour?

What To Say About Your Disability or Condition

Maybe talk about specific things you struggle with, if you’ve been diagnosed with a certain thing or the reason why that condition effects you (if you are lucky enough to know) or how long you’ve had it. Go into as much or as little detail as you want but try to keep your sense of humour. At the very least it gives people a better understanding of you, and why shouldn’t they!

Admit If You Need Help WithA Task

I know with invisible disabilities it’s possible a person can keep on scraping by and covering up their mistakes or their needs but that knotted stomach feeling of dread can lead to anxiety and depression. It’s much better to ask for help or clearer guidance from your teacher/lecturer/manager/colleagues/friends from the start, even if that help is just a little more patience or understanding from them. Absolutely everyone needs help sometimes so if you are really really struggling with a task don’t feel embarrassed to ask for some!

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Being more open about it might make you feel vulnerable at first but as I’ve learned, hiding it can make you just as vulnerable. They are some awesome people out there with more empathy and understanding than you might first realise.

The more people talk about disabilities, the more people get to hear about them and gain a greater understanding of them :o)

Chrissie xx

10 Reasons Why I Love My Wonky Body

I’m going off when my body and energy levels are on good form because I’m trying to be nice to myself these days ^_^

  1. It’s got a lot of natural rhythm which makes it easier to dance without me really loving-yourselfover-thinking it.
  2. My legs are long and surprisingly strong, through them having to correct my balance constantly when I stand and walk. The Amazons have nothing on me lol
  3. I have a really fast metabolism which is great for never having to worry about getting overweight (just hangry) and it means I can totally justify ordering sides with my main meal.
  4. Being tall is pretty handy to not feel claustrophobic in a crowd and to see where I’m meant to going if it’s somewhere new.
  5. My immune system may attack me but cold and flu viruses beware, it’s effectively coming for you too!
  6. I tan quickly which is awesome after a grey winter – I mean my skin, not the weather.
  7. I have weirdly good balance if I really concentrate.
  8. Being hypermobile is actually really handy when trying to reach past a load of clutter or when the lid off something has rolled under furniture.
  9. I’ve gotten some interesting scars over the years but I also heal surprisingly quickly.
  10. I’m going to be inhabiting my body for the rest of my life so I might as well appreciate it!

Chrissie

Note: Incase you wondering, the conditions I have are Demyelination (similar to but not actually MS), Dyspraxia, Aspergers, Sensory Processing Disorder (relating to the latter three conditions), allergies, PCOS (suspected by GP), Hyperthyroidism, Hypermobilty Syndrome (including food intolerance), which can all have the symptoms of chronic fatigue/brain fog in common.

Selfcare To Do List (a fun one)

I thought I’d bump up this post as it is a Sunday – probably the best selfcare day of the week, if you don’t have the time or energy to do everything, every day.

It’s so easy to let small habits slide when we are busy, tired and/or ill but it’s those small things that, when added together make such a big difference to our emotional and physical wellbeing.

Here’s my handy list of things that I do, some of which are fun, some are simple but make such a big difference and some are selfless but not really because, let’s be honest, it feels nice to be nice. ^_^

Daily

Drink water, probably should drink a bit more

Take meds/vits

Coffee or Protein Smoothie (which still contains coffee)

Eat x3 (preferably not all at once toward the evening!)

Lip balm

Facial Serum/Oil

Fix hair (combing the beast totally counts)

Wear at least one thing I really like such as earrings, pointy boots, mascara or a sparkly pin.

Record one thing which made me happy/grateful that day, either on Instagram or happiness journal.

Take at least 30 minutes to myself with no interruptions if needed.

Drink some coconut water or aloe vera for the easily absorbed electrolytes.

Get off my ass and volunteer to make a brew/take empty plates into kitchen etc. x3

Gentle stretching/balance/co-ordination (whisper it) exercises

Weekly

Treat myself to any food I like

Have an evening totally to myself

Read part of novel (C,mon you have seven days to choose from, seven!)

Watch trashy TV shows that make me smile or laugh

Herd caterpillar (pluck eyebrow/s)

Pet or feed a cute animal (caterpillar does not count)

Some kind of grocery shopping OUTSIDE (yes, that place where there is sunlight and air)

Facemask/facepack/natural skin peel

Do a good deed

Blog/comment on other blogs

Do a load of washing

Iron (bahahaahaaaahaa!)

Hug or at least phone my Dad

Exercise on cross trainer

Get tipsy

(important to get the latter two in the right order)

Monthly

Go out for a fancy meal

Have a completely needless but totally indulgent bubble bath

Check bank statements (for possible beer induced purchases)

Trim hair-canopy back to recognisable fringe/bangs

Monthly round-up on my blog/Instagram

Drop that item off at the charity shop/food bank in supermarket

Watch a film I love

Have fresh flowers in the living room

Chrissie

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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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Motivational Monday – Just Be You

The first one in this series is from a disability/chronic illness/neurodiverse perspective but I reckon most people will be able to relate to this, in one way or another.

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I love the part in this which says ‘Be safe, if you can be.’ I cannot tell you how many times I’ve battled on when really it wasn’t safe for me to do so because I was that exhausted, I was having accidents and making terrible decisions. Having a rest is not giving up, it’s enabling you to come back stronger later.

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This idea sunk in when I was around 14 and I thought if people are going to stare at me no matter how hard I try to blend in, then I might as well give them something that I’ve CHOOSEN for them to stare at. Something so they actually see me for a change.

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Neurodiverse people are just a different kind of normal. Don’t forget your quirks are part of who you are and they have helped to shape your character.

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Too loud, too fast, too bright, too busy, too freakin much! This is when you know you need to take a moment to reset and de-stress, if only for five minutes.

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I cannot tell you how important it is to do this, for your own self esteem and sanity. I ended up having to cut a really good friend out of my life because his mates hated me and he ignored it – expecting me to put up with it. Nah! I’ve also tried my arse off to fit in with a group who had no intentions of even trying to understand me. If they are ‘your kind of crazy’ you shouldn’t have to try that much.

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Bit of a literal one for me this, haha! Seriously, though today is a new day and another chance at getting that difficult thing right. Which led me to creating this one myself…

You are enough.

Chrissie