Disclosing Dyspraxia

“She talks about her dyspraxia on the internet where anyone can see, she must find it so easy to explain dyspraxia to other people!” is what you may be thinking. However, that’s not completely true. Whilst blogging about dyspraxia has definitely given me more confidence when talking about it to other people, disclosing dyspraxia is something I still struggle with at times.

I think the main reason is due to the fact that dyspraxia is so widely unknown and misunderstood. If I knew that whenever I mentioned dyspraxia, the other person instantly knew what that meant, I’d be fine telling others about it. That’s not the case though, unfortunately! Instead, I’m thinking “It’s most likely this person has never heard of dyspraxia before, or they’ll think I said dyslexia. Here we go again…”.

In addition to this, it’s not like dyspraxia is something that’s simple to explain. It affects such a wide range of things that even if you live with it and know exactly what it is, it can be hard to explain that to others. If you mention dyspraxia in a conversation and someone asks what it is, you don’t exactly have the time to then go on to say: “Well, it affects the way the signals are transmitted from my brain to my body. This means it can affect my co-ordination, balance and gross and fine motor skills. Oh and it can also affect my concentration. And speech. And telling left and right apart. And sense of direction. And my thought processes. I ironically forgot, it can also affect memory. But for me that’s short term memory it affects, our long term memory is often good. It also has similarities to autism – I find changes in routine difficult, I find eye contact difficult, I have difficulties in social situations. It affects my spatial awareness too. And there’s probably a few other things I’ve forgotten, but that’s basically dyspraxia summed up…” It’s just not possible!

I personally haven’t found a short way of explaining dyspraxia that sums everything up. If I explain it just as being a difference in the way my brain sends signals to my body then I feel like people will think of it as just affecting me physically. If someone generally asks what dyspraxia is, then I’ll try to give a bit of an overview of a few of the things it affects. On the other hand, if it’s due to a particular situation I’ll tend to explain the aspect of my dyspraxia relevant to that situation. Quite often I’ll end up overthinking it afterwards though, thinking about how the explanation was not very representative of what dyspraxia is.

What I find quite hard is going into a new situation where no-one knows you have dyspraxia. Obviously whether you disclose it or not depends on the situation, but for me one of the most recent examples I can think of is starting university. I had actually already met someone on my course at an applicant day who I had mentioned my dyspraxia to, as it came up in conversation. So knowing that one person knew helped a little bit. But I was still really worried about how I would go about explaining it to others. And when would I disclose it? I kind of imagined it would be really noticeable that I was using a voice recorder in lectures, so I thought I would get asked about this. What I didn’t think of was that there would be quite a few others who use a voice recorder too. Although it was ironically this that led to me mentioning my dyspraxia. A friend also had a voice recorder and asked where I’d got mine from, which meant having to explain I’d got it as part of the Disabled Students’ Allowance. As I mentioned above though, blogging has helped when it comes to explaining dyspraxia to others, mostly by providing a way to bring it up in a conversation. For example, a few days after this a friend was asking me about my blogs and asked a bit about what dyspraxia is. As much as I hate answering the question “What is dyspraxia?”, at the same time it is useful when someone asks you about it in an open way where you’ve got lots of time as it gives you the chance to explain it in a bit more detail. Looking back, there wasn’t really any need to worry so much about explaining dyspraxia as my friends at university have all been really understanding!

So, friends at university are people who I would definitely make sure know I have dyspraxia…but who else? What about a comment made by someone who you’re not going to see again? (Alice has written a great blog post discussing this too: Who to tell…Does it really matter?) A lot of it is down to personal preference, some people don’t really talk about their dyspraxia at all. I personally would consider myself to be quite open about it (definitely in the world of blogging!) but there are some situations that I struggle with. For example, I once had a taxi driver tell me “It’s not far, it’s a nice day. You could have walked.” Looking back, I kind of wish I had mentioned my dyspraxia but at the time I just couldn’t think quickly enough on-the-spot of what to say in response. What really frustrated me about that comment is how that wouldn’t have been said if I had a visible disability… Anyway, there have been situations where I’ve looked back and regretted not mentioning my dyspraxia and have got frustrated over it. But, there have been times where I’ve been able to use this to think of what I’d say next time if a similar situation were to happen again (which has sometimes happened). I am getting a bit better at disclosing dyspraxia over time though and there have been a couple of situations recently where I’ve mentioned it.

Thinking of what to say in advance can also be useful if you know you have a particular situation coming up. This is helpful as you have the time to think about what aspects of your dyspraxia are relevant to that particular situation. I also recently bought a keyring card which gives an overview of dyspraxia. This can be purchased for £2 from the Dyspraxia Foundation website. I haven’t had to use it yet, but it’s helpful to know I have that in my bag if I’m ever in a situation where I need to explain my dyspraxia but I’m having trouble explaining it briefly.

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As well as the initial disclosure of dyspraxia, I also feel there is a second aspect to disclosure. There are often times where people point out something, but it’s related to your dyspraxia and you need to point that out. This is despite the fact that the person already knows you’re dyspraxic – perhaps there are some aspects of it they are unaware of. Even though I know I’m not, there are times where I feel like I’m making excuses in situations like this. I do sometimes have difficulty deciding whether to mention dyspraxia or not. However, this often depends on who I’m with. If I’m with someone who I’ve known for a long time, then I find I’m quite comfortable with talking about my dyspraxia. In fact, there’ll be times I bring it up myself in terms of talking about my blogs etc. Whereas if it’s someone I don’t know that well I can be a bit more unsure about it (technically it should be the other way round, I should be willing to make them more aware…)

The fact that explaining dyspraxia involves quite a lot of thought processing and that dyspraxia affects thought processing isn’t quite the best combination! But when I think back to the beginning of secondary school, I am definitely more confident now in talking about my dyspraxia than I was then (although in primary school I was probably even more confident about it than now, as I innocently thought that most people knew what dyspraxia was!) I know for certain I’m confident in talking about dyspraxia across social media! It seems strange now to think I never posted anything dyspraxia related… Now just a few bits to work on in explaining it in face-to-face situations…

Disclosure was chosen as the current theme for Dyspraxia Foundation Youth. If you would like to take a look at the factsheet on this, here is the link: https://www.dfyouth.org.uk/support/factsheets/

Natalie 🙂

 

World Vitiligo Day 2017

I know my usual blog posts are about dyspraxia, but I also have a skin condition called vitiligo which I wanted to blog about. I’ve actually been meaning to write this particular blog post for a couple of years now, but each year I’ve never got round to writing the blog post in time (except this year of course – only just, though!)

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So, vitiligo. What is it? Well, it is an autoimmune disorder (autoimmune disorders are where your immune system decides your healthy cells are foreign, therefore attacking these cells). In the case of vitiligo, the cells being attacked are the melanocyte skin cells that make melanin. Melanin is what gives your skin its colour, meaning that parts of your skin lose their pigment.

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For the less scientific explanation, it essentially means that you have white patches on your skin.

These white patches don’t hurt or itch, they’re just ‘there’. However, due to lacking melanin they don’t have any protection from the sun. This means having to be especially careful of the sun and ensuring that factor 50 suncream is worn! Whilst writing this blog I’ve found out through google that another name for vitiligo is ‘leucoderma’ – leuco meaning white and derma meaning skin; I never knew that!

I’d never heard of vitiligo myself until a few years ago. And here’s how I first heard about it…

It started almost 4 years ago in August 2013, when I began to notice very faint, small white patches on my hands. I did wonder what they were, but I wasn’t too bothered by it as I already had eczema on my hands and thought it might be related to that. I also had tiny little scars on my hand from when I had injections as a baby so I thought it could have been something to do with that.

Over the next few months, however, the white patches on my hands began to spread and started to become a bit more obvious. They were still quite faint, but were definitely becoming more noticeable. It wasn’t until March the following year when I decided to google it. Straight away, vitiligo came up (which I then thought was pronounced ‘vi-til-ih-go’ and later found out it’s ‘vi-til-eye-go’). I saw things saying that there is no cure and the patches can spread over time. Half of me was thinking “I hope it is just something else” but at the same time the pictures and description were exactly like my skin.

It sounds really weird, you’d think white patches on your hands wouldn’t be something you’d forget about, but I actually kept forgetting to make a doctor’s appointment about it. It was in April when I went to the doctor’s about it, essentially saying “I’ve got these white patches, are they vitiligo?” (by then I also had a white patch under my armpit and one developing around my mouth). The doctor said it may have been a fungal infection, as sometimes they look similar – so she asked another GP for a second opinion as he was a dermatologist. I remember him saying “I think it is vitiligo I’m afraid” (although I was already 99% sure it was that anyway, so it wasn’t really a surprise). I thought it was a little weird the way he said it, it sounded like the sort of thing they’d say about a serious illness. But I guess it’s just because there wasn’t anything they could do about it.

Due to vitiligo being an autoimmune disorder, it is often associated with other autoimmune disorders – so I had to have a blood test done just to rule out anything else (it all came back clear). The doctor I saw also asked if I wanted to be referred to a skin camouflage service who do specialist make-up. From what she was saying, I thought it would be really hard to get but I thought it would be worth a try anyway. I was also referred for another appointment to see a dermatologist, where they could ‘confirm’ it was vitiligo.

The appointment was in June, but during this time the white patches didn’t really change very much. I did get a couple of faint white patches on my stomach though, but even now they are still very small and very faint – I can actually barely see them! On the other hand, as the rest of my ‘normal’ skin tanned it meant that the vitiligo became more obvious as there was more of a contrast. I wasn’t majorly bothered about it at this point though, I remember me and a friend once making out the different ‘shapes’ we could see on my hands!

So I went along to the dermatology appointment. It was a bit strange the way they did it as it was actually with the second doctor who had come in during my first appointment. I didn’t really see what there was to say that was any different to what he said before, but I guessed they just had to do it to officially confirm it.

During this appointment the doctor confirmed that it was vitiligo (which I already knew) and explained that there wasn’t really anything they could do about it. He did prescribe me with some steroid creams, which he said there was a possibility they may have worked but he couldn’t guarantee it. I remember him being very clear that one was for my hands and one was for my face – I don’t like to think what would have happened if I’d have got them the wrong way around! The doctor also pointed out how important it was for me to wear Factor 50 suncream (I’m sure the first doctor pointed it out too – but I can’t remember!) He also said that if I didn’t use suncream it could make the white patches worse. It has also been recommended that I take vitamin D tablets, due to the fact that using the amount of suncream that I do means getting less vitamin D from the sun.

I tried the steroid cream over the next few months, but it didn’t make any difference. As it was now summer and the rest of my skin was tanned it meant that the white patches were quite obvious. And the amount of questions I got asked that summer! In some ways I can understand, if you suddenly notice someone you know has got white patches on their hands (this was where it was most obvious) you’re probably going to wonder what it is… On the other hand, it got so frustrating having to explain over and over again. I’d get asked “What happened to your hands?” and I even had a few people say they thought it was some sort of acid burn! In addition to this, I think the fact that people were asking questions about it made me realise it was obvious. And the more questions people asked, the more self-conscious I got about it…

When it came to going back to school in September, going into year 13, I was so worried I would get lots of people asking about my hands. I think this was probably the most self-conscious I’ve felt about it. Due to the fact that I use a laptop in lessons, I thought this would make it even more obvious – when I was typing. There were a couple of times where, as I was wearing a cardigan, I actually pulled my sleeves further down to cover my hands as I felt so self-conscious about it. I did have a few times where I was pretty sure a couple of teachers were staring at my hands, but then this could have just been me worrying. Despite what I thought, I didn’t actually get asked any questions about it at school at all!

It was during the September when I had a letter about my skin camouflage appointment, which was a few weeks later. A few weeks prior to this I received some information packs from the charity ‘Changing faces’ – the skin camouflage service comes under this. I was quite confused when receiving them, as they seemed to be aimed at people with more severe ‘disfigurements’. One of them was titled ‘Communicating with confidence’ whilst the other was titled ‘Living with confidence’. I kept them anyway just in case there was anything useful in there!

I also received a letter about another dermatology appointment, which was a few days before the skin camouflage appointment. I remember I really didn’t see the point to the dermatology appointment – I would just be going there to say the cream hadn’t worked. It was essentially just that really, along with showing the doctor the bits where my patches had spread. They were very surprised how long the skin camouflage appointment had taken though! I’m not sure if it was this appointment or the appointment before, but me and my Dad mentioned that we’d quite a few things online about treatments. We were told that there wasn’t really any effective treatment for vitiligo, but they did tell me I could come back if the patches got worse – particularly on my face. That kind of confused me, because they’d just told me that there wasn’t really anything that could be done about it…

A few days later I had my skin camouflage appointment. Which was conveniently close to the Waffle House in St. Albans – perfect timing for lunch after the appointment!

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I remember me and my Dad were quite confused at which way to go for my appointment and the woman in reception was just so rude! Thankfully though, the woman I saw for my appointment was lovely! We mentioned at the beginning about my dyspraxia, just to make it clear that applying make-up could be quite tricky for me! She told me about the different types – there was a base coat, a main coat and the finishing powder. What really surprised me was how long it took to apply – to apply it to just one hand it took around half an hour! It was amazing the difference it made though. The colour was slightly too orangey for my skin so she ordered a slightly different shade but this was the difference it made.

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It wasn’t until looking back on this photo that I realised how much my vitiligo has spread (on my left hand at least!) I no longer have the little ‘bubbles’…

When it came to my face, I tried applying the make-up but struggled with getting the pressure right, not putting too much on etc. It doesn’t help that I don’t wear make-up anyway so I’m not used to applying it at all. She also mentioned that the person who had an appointment before me was undergoing treatment (I think it was phototherapy), which seemed strange considering what I’d been told about there not being any effective treatment. She also mentioned suncream and said that I would need to wear it on days even when it wasn’t that sunny. I hadn’t realised this, I thought it was just on really sunny days that I had to be extra careful. In addition, she said that it would be possible to get suncream on prescription which I also wasn’t aware of. I later had a doctor’s appointment where I got the skin camoflauge cream and suncream on prescription (bearing in mind I go through a lot more suncream than others would!) The skin camoflauge appointment lasted about an hour altogether – I was really surprised it lasted this long, even more so with the fact that it’s done by volunteers!

For this reason, I feel so bad about the fact that the appointment was nearly 3 years ago and I still haven’t used the skin camouflage make-up. Firstly, this was due to the amount of time it takes to apply. Secondly, it’s due to the fact that I’m not as bothered by it really. There are times where I do feel a bit self-conscious about it, but not really to the extent where I’d want to start wearing skin camoflauge make-up. I don’t get asked nearly as many questions now about my skin in comparison to that first summer – in fact I can’t remember the last time when someone asked me about it! I have had a few times though where, for example, I’ve been in London sat on the tube and out of the corner of my eye have seen someone staring at my hands – which isn’t exactly nice! It is much more noticeable in the summer when the rest of my skin tans, whereas in the winter it’s sometimes not very noticeable at all. There’s quite often days where I kind of forget I have it!

Another reason I tend to be more aware of it in the summer though is due to having to wear lots of suncream. I once saw an advert for a suncream which you only have to apply once a day, but then I read the reviews where it said it stains very easily. That made me think “Maybe not the ideal suncream for a dyspraxic!” I’ll stick to the standard suncream for now (yes ‘stick’, literally!) The most annoying thing about suncream, though, is that I have a patch of vitiligo right near my eye, which means having to put suncream on right near my eye. Nine times out of ten I’ll end up getting suncream in my eye a few minutes later which isn’t fun!

You may have read this blog post wondering if this is the condition that Michael Jackson had. The answer to that is yes, it is. He had a very severe form though. In fact, World Vitiligo Day falls on 25th June as a memorial to Michael Jackson – marking the date of his death. Another celebrity with vitiligo who has been in the media in recent years is Winnie Harlow, a model. I saw something online last year about people ‘copying’ her vitiligo with make-up, which I didn’t agree with. Here’s what I wrote on Twitter about that:

Going back to treatments as I mentioned earlier, I’ve seen all sorts online about various ‘natural home remedies’ but they’re not exactly the most reliable sources! What I have seen, though, is that there has been research into a new treatment that could be use to cure vitiligo. It’s very interesting!

For those wondering, vitiligo now mainly affects my hands but also partly my face. I have other smaller patches in various places on my body – my back, ankles, armpit, elbow. I’m not quite someone who sees vitiligo as a wonderful, unique thing, but at the same time I’m not too bothered by it. It’s just ‘there’ and I’ve got used to it really. I don’t mind bringing it up in conversation, but please don’t mention ‘how much worse it’s got’ or that it ‘looks like acid burn’ (not the most helpful comments!)

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Considering this blog post hasn’t been about dyspraxia, it’s been quite a long post. But as I mentioned it’s something I’ve been wanting to blog about for a while. Hopefully it will have helped raise a little awareness! As I did for my first ever blog post, I’m going to include a poll. Will be interesting to see the results!

 

Random fact: animals can have vitiligo too!

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Natalie 🙂

The British 10k: my preparation so far…

It’s been a while…but now I’ve finished my second year of uni for summer, hopefully I’ll be updating my blog more regularly!

In exactly three weeks time I am completing the British 10k for Dyspraxia Foundation. Last year I walked the 10k, but shortly after I decided that I wanted to challenge myself further for this year’s event and jog parts of it too! I thought I’d write this blog post to talk about the preparation I’ve been doing.

So, I’d decided that I wanted to jog parts of it too. However, I had no idea really how to go about preparing for that. I used to take part in disability sport (running short distances though!) which I think has helped a bit with getting used to running in terms of the co-ordination side of things. In terms of the fitness side of things though, running for more than a few minutes would be a struggle. I was soon to realise that despite having been on long walks, running was very very different!

After looking online, I found out that the best way to start would be to do intervals of walking and jogging. So I did this a few times between July and September. I couldn’t believe how much more tiring jogging was compared to walking – I hadn’t realised the difference would be so big! My main focus, though, was the next 10k I would be taking part in in September, Parallel London. I would be walking this event, so it was mostly walks in preparation for this.

My Dad joined me taking part in the Parallel London event – this one we didn’t do for charity, but I did wear my Dyspraxia Foundation t-shirt for the possibility that it would raise a little awareness! We walked most of the 10k, but we did jog very small parts of it (30 seconds at the most). We completed the 10k in a time of 1 hour 37 minutes, which was great as it gave us a new time to beat in the 2017 British 10k (I completed the 2016 event in 1 hour 56 minutes).

Now that I’d done the Parallel London event, it meant I could focus more on the next event – the 2017 British 10k. Although it was a long way off, I knew I had quite a long way to go in terms of my fitness. I had never been someone to go out for jogs (part of the reason was because I thought it would be really awkward if I saw someone I knew – which just seems silly now!). So I continued with the intervals of walking and jogging (and found a great app on my phone for this too). I started off by simply walking for one minute, then jogging for one minute. I got into the routine of doing this a few times a week in the mornings before getting on with uni work for the day. I then increased this to walking for one minute and jogging for two minutes. I’m sure there was another stage next, but I can’t quite remember exactly what!

It got to the middle of October and I wanted to see how far I could jog without stopping. I continued with the same route (I had been going to a place 5 minutes walk from where I live, which is ideal) but rather than walking parts of it, jogged it. To my surprise I managed to jog the whole route (which was 2.7km)! Yes, it was a very slow jog but it showed my fitness has improved.

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Same place, obviously not taken in October though. Ideal location for a jog!

I continued to jog this route up until the middle of November. It then started to get very cold, which would leave me with the weird feeling of being cold but also hot from running. It took me a few times to work out what sort of clothing was best to wear, where I wouldn’t be too cold or too hot (as I mentioned earlier, this was very new to me!).

As it was coming towards the end of my first semester at uni the workload was increasing, with many deadlines, so it was better for me to start uni work earlier rather than going out for a jog first. Obviously with the evenings getting darker it meant I couldn’t really go out for a jog later after I had finished uni work either. So I didn’t really do much in terms of jogs for a couple of months.

During the time I had off in January I went for a few walks again. I remember one time I decided I’d go on a different route (not the best idea when you’re dyspraxic). Firstly, it was extremely muddy. I very nearly slipped over a few times, but thankfully didn’t! I also got a little bit lost and went slightly the wrong way, but luckily not for too long. Looking back on my fitbit, that walk was 8.94km!!

Over the next few months I occassionally went on the treadmill or went for a walk, but probably only about 3 times in total – it was hard to fit in with uni work again. During the easter holidays in April, though, I had a bit more time (plus it was getting lighter in the evenings). This meant I could go out for a jog after doing uni work/revision. It worked out quite well getting up early, getting revision done, and then late afternoon going for a jog. Or if the weather wasn’t so good, I could go on the treadmill. For the jogs I went on a couple of different routes, including the same place as before and a slightly longer route to another place (part of the Greenway walk for any of you reading this who live in Letchworth). Similarly to the end of last year, I decided to jog part of it and see how much of it I could jog before having to stop and I surprisingly managed further than I thought! I managed to jog 2.8km plus walking the 1.3km there and back. The hardest part is trying to keep up the pace when walking back! But I’ve been doing it in around the pace I am aiming to do the 10k in (although that will be double the distance…) so I’m pleased with how it’s going.

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Recently the challenge has been trying to go early enough so that it’s not absolutely boiling. I don’t mean to complain (I know I said before it was too cold!) but jogging in the heat is so difficult. I just hope it’s not too hot for the 10k in a few weeks!

I never really would have imagined me being someone to say “I’m just going out for a jog!” but I have actually really enjoyed it. The greenway walk is such a nice route too and quite a few times I’ve seen a rabbit run across the path in front of me – strangely enough in around the same place each time. Much nicer than having a dog trying to run after me at Norton Common – although that was quite funny at the same time! I’ve also discovered that trying to take a boomerang video whilst on the cross trainer isn’t a good idea…first my iPod dropped, then my phone. They both survived though (what would I do without a screen protector and tough case?!).

I’ve been posting regular updates to my JustGiving page on how my preparation has been over these past few weeks and will continue to post updates over the next few weeks too. My Dad is joining me for this year’s event and our aim is to beat our time of 1 hour 37 minutes. In terms of fundraising, we are aiming to raise £200 between us. Thanks to everyone who has donated so far, we’re just over halfway there at the moment. The Dyspraxia Foundation is an amazing charity who do so much to support people like me with dyspraxia. They don’t have any government funding either, so heavily rely on donations. I’ve gone into more detail about some of the brilliant work they do on my JustGiving page. If any of you are able to donate, please do. As little or as much as you can! It all makes a difference!

My JustGiving page: https://www.justgiving.com/fundraising/natalie-williams2017

My Dad’s JustGiving page: https://www.justgiving.com/fundraising/chris-williams125

And our team page: https://www.justgiving.com/companyteams/NatalieChris17

Natalie 🙂

Dyspraxia and Auditory Processing

Sorry it’s been a while since my last blog post! I’ve been so busy with uni, but anyway, I’ve finally had the chance to write a new post.

So, dyspraxia and auditory processing. This is something which I’ve only really found out about fairly recently. I knew I found particular things hard of course, but what I didn’t know was that it was all part of ‘auditory processing’ – which is, to put it simply, the way in which we process sound.

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Coincidentally, I did also have trouble with my hearing when I was younger. At about the age of seven I had to have an operation where grommets were inserted. There is one particular conversation I can remember, after the operation, which I now know is related to auditory processing (but at the time it just seemed funny!). Someone asked me “So did you find the operation helped?” to which I answered “Pardon?”. I honestly wasn’t joking, but at the same time I did actually hear what she said. I even remember thinking, “But I did hear what she said – it just took me longer”. What I now realise is that it was related to auditory processing.

So although I heard what she said, I just wasn’t able to process it straight away. I said “Pardon?” because I hadn’t processed it yet, but by the time she repeated it I had processed it. This is something that I’d quite often do, but I’d never really properly understood it. For that reason, I’d never put it down to dyspraxia before either – I thought it was just me! I would even say to some people “Pardon?” followed by “Oh no don’t worry I realised what you said” – which is quite amusing!

It wasn’t until I went for my Needs Assessment as part of my Disabled Students’ Allowance, a couple of years ago, that the needs assessor mentioned it. She said that it’s related to auditory processing and it is quite common amongst individuals with dyspraxia. All those years of saying “Pardon?”, when I actually had heard people, suddenly made sense!

Most of the time I don’t actually point out to people that I did hear what they say – I think that would seem a bit strange! So quite a few people probably think I have very bad hearing from the amount of times I say “Pardon?”! If it’s someone I know really well though, who knows I have that particular difficulty with processing, then I will sometimes point it out and kind of laugh about it.

Despite the fact that I’d been told it was related to dyspraxia, I hadn’t actually heard anyone else mention it. Until one day I was browsing through facebook and saw someone on a dyspraxia facebook group mention it – with lots of comments saying “Me too!” Some parents said that they felt their child said “Pardon?” deliberately in order to give themselves more time to process what is being said. Personally, I do that ocassionally – I find it much easier to just pretend you didn’t hear what someone said than to point out you need more processing time! But most of the time when I ask someone what they said it’s before actually realising that I did hear them, I just didn’t process it quickly.

There are other aspects to auditory processing too. There’s the fact that it can be difficult to block out background noise. This could affect a range of situations – from concentrating on work while there’s music in the background to concentrating on a conversation when there’s other noise/conversations in the room. Also it affects taking lecture notes. For me, this isn’t a major one, it’s more my concentration that affects this. I definitely have improved a lot in making lecture notes compared to the beginning of university. I do quite often write a word that’s similar to the one I intended to write though – for example I’ll write something like ‘controversial’ instead of ‘confidential’! It can even affect following a conversation, as I’ve mentioned in previous blogs this is something I find particularly more difficult in bigger groups of people. Another example is when there’s a lot of information at once – this is linked to short term memory too, but to get the information into our memory in the first place we have to be able to process it. So often we find things need to be broken down.

When googling dyspraxia and auditory processing, I did see something about a completely different condition called “Auditory Processing Disorder” and to be honest I’m still slightly confused about it and how much overlap there is with dyspraxia and what would be classed as sufficient for a separate diagnosis etc. But auditory processing definitely seems to be something that lots of dyspraxics struggle with anyway. I know this blog post has been very specific – there may even have been some dyspraxics who have read this and have found they can’t relate to it at all (again, everyone is different!). However, it’s something I didn’t know much about until recently so I thought I’d blog about it in case it helps anyone else to read about it (that and the fact that I love blogging anyway too!)

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Natalie 🙂

Dyspraxia and Social Skills

As those of you who read my blog will know, I’ve brought up how dyspraxia can affect you in social situations many times as it is one of the least understood aspects of dyspraxia (and as I have mentioned before, it is more commonly associated with autism). It has now been voted as the topic for members of the Dyspraxia Foundation’s Youth Focus Group to discuss, so this blog post will be specifically about dyspraxia and social skills.

Social skills is one of those aspects of dyspraxia, where unlike motor skills, is not a required difficulty for you to experience in order to be diagnosed with dyspraxia. If dyspraxia was a recipe, difficulties with motor skills would be the main essential ingredient that everyone immediately thinks of. Difficulties with social skills, however, would be the ingredient that isn’t necessary – it isn’t always there and can vary in it’s amounts, but when it is there it does make a difference.

For many of us with dyspraxia, social skills just don’t come as naturally and as easily to us as they do to others. There are quite a number of situations where I just don’t know how to naturally respond – it’s like I should know, but I just don’t. For this reason, I often find myself preparing in my head what to say beforehand if I know a particular situation is coming up. I’ve even asked my Dad before “If they say this, what should I say?”

Although sometimes in social situations I simply do not know what to say at all, there are also times when I just can’t think of what to say quickly enough. This is due to our slower thought processes. Personally I find large groups more difficult due to this. The conversation is going so quickly and between so many different people that it is hard to simply keep up with it at times. If I then think of something to say and how to word it etc., the group will quite often have gone past that point and onto another topic already! Even judging when it is the right time to interject can be difficult too.

Something that may help when you’re in a big group of people is to try just starting a conversation with the person next to you. It doesn’t matter that you’re not talking to the whole group straight away, it could end up turning into a discussion with the rest of the group anyway.

As I mentioned above, group conversations are a lot more difficult for me. On the other hand, when I’m in a smaller group/or just talking to one person, I quite often go on and on about one particular thing and don’t stop talking! That’s something I do sometimes worry about afterwards though, that I went on about something too much.

I think given the difficulties many of us with dyspraxia have in social situations we can often worry about them afterwards. We may be thinking things like “Did I get my words muddled up?” or “How embarrassing that I took that so literally!” But then most of the time they turn out to be things that the other person didn’t even notice or has forgotten about.

For many dyspraxics, we experience a certain amount of anxiety as part of our dyspraxia, and this includes anxiety around social situations. Personally I find that this affects me in new situations, particularly with people I don’t know. For me, it’s not so much during the social situation itself – it’s more the worrying before and after the social situation. For example, if I’ve got a new situation coming up with people I don’t know I tend to overthink the situation a bit more than other people might – this involves rehearsing in my head possible things I might say. Then there’s the overthinking after a situation too, as I mentioned above. There’s been times before where I’ve been worried after a situation that I’ve offended someone by something I’ve said, and I’ll keep on overthinking about it, when in fact it turns out I haven’t said anything wrong.

As I mentioned, many of us with dyspraxia experience a certain amount of anxiety, but for some people this anxiety is much more significant and will be a diagnosable mental health condition. I don’t have any mental health conditions myself, but I thought it was important to mention due to the link between dyspraxia and mental health – many dyspraxics also experience additional mental health issues, such as social anxiety.

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Eye contact is something that dyspraxics may struggle with for different reasons. For some people it is the anxiety associated with it. For me, well…to be honest I don’t know why it is difficult, it just feels awkward. I’ve noticed recently that I seem to find it slightly easier to give eye contact when the other person in the conversation is talking but more difficult when it’s me that’s talking. One tip I’ve heard for eye contact though, if you do find it very difficult, is to look at the bridge of someone’s nose. This gives the appearance that you are making eye contact. It sounds like something that would be particularly useful in situations such as an interview, where you may come across ‘better’ if you give good eye contact.

Talking about how eye contact can be difficult, you’d think phone calls would be ideal. But surprisingly they are not! I absolutely hate making phone calls and so do many other people with dyspraxia. Something I do though that helps a little bit is write down a few bullet points of what I want to say. It’s helpful for the parts you can plan, but not so helpful for the unexpected questions!

There are lots of things that make phone calls difficult. For example, dyspraxia can affect our speech and I have a slight lisp so I always find it awkward when I have to give my postcode over the phone! My postcode ends in ‘S’, so 9 times out of 10 they will have to ask me whether I said ‘S’ or ‘F’!

Something else we can find difficult in terms of our speech – this can affect us in any social situation, not just phone calls – is judging the volume of our voice. This can be either way: talking too loudly or too quietly. Usually for me it’s talking too loudly! We don’t realise we’re doing it either…well, not until someone gently reminds us we’re talking very loudly in a quiet place! Linking on from this the tone of voice can be hard to judge too – in both our own and other people’s voices. In our own we may sound really bored or annoyed without meaning to and for others we may incorrectly interpret the tone of their voice.

Something I only actually found out in the past couple of years about dyspraxia is that conversations can be affected by background noise. Blocking out the background noise is always something I’ve found a bit more difficult than others – it takes me more effort to focus on what the person is saying, but previously I hadn’t put this down to dyspraxia.

Talking online has it’s advantages – no background noise, no eye contact, more time to process the information and respond. However, in some ways it can be even harder to interpret what the other person is saying! I remember someone on a dyspraxia group online once requested for people to use emoji’s at the end of what they were saying – it really does make it a lot easier!

Some people believe that the difficulties us dypsraxics face in social situations are a consequence of struggling with confidence (which we may struggle with due to being left out etc. due to our dyspraxia). I agree that confidence does play a role for some parts – whilst I’m not the most confident of people, I’m definitely more confident than I used to be and I do feel this helps in social situations. However, I personally feel confidence only plays a small role and that dyspraxics do have genuine difficulties with social situations that are simply due to being dyspraxic. Again, this may differ from person to person. Maybe some dyspraxics struggle socially only as a result of confidence whilst others struggle anyway regardless of confidence.

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Although this specifically talks about children with dyspraxia, many parts of it can be applied to teenagers and adults with dyspraxia too.

Although we may sometimes struggle in social situations, being dyspraxic does have its advantages socially too. The fact that we know what it is like to have a hidden disability means we’re more likely to be considerate of others in social situations and understand that not everyone finds social situations easy.

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Don’t forget to take a look at the social skills information sheet on the Dyspraxia Foundation Youth website at the following link: https://www.dfyouth.org.uk/get-involved/dyspraxia-foundation-youth-poll/.

Natalie 🙂

Dyspraxia Awareness Week 2016 – A Computer Analogy of Dyspraxia

A few weeks ago my Dad came up with an interesting way of describing how my brain works. He said it’s a bit like my brain has to be programmed to do certain things and it has to be practiced again and again for it to sink in, but once it does sink in I can do it. However, if part of the situation changes my brain has to be reprogrammed again. I also seem to say certain things in the same way every time, it’s as though my brain is reducing the amount it has to think about at once by having certain areas which have certain ways of thinking.

Seeing as this week (9th-15th October) is dyspraxia awareness week (apologies for this blog post being so late – I’ve been so busy with uni work!), I thought I would expand on what my Dad was saying to try to come up with a computer analogy of dyspraxia to explain some of the areas dyspraxia can affect. Hopefully, if there’s anyone reading this who wasn’t previously aware of what dyspraxia was, it’ll help you to understand dyspraxia a bit better. I’m also aware that other people have come up with explanations of aspects of dyspraxia before in relation to a computer, such as:

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So if anyone has any other explanations that they would like to add then feel free to write them in the comments – the more ways we can think of explaining dyspraxia the better, as the more likely it is that people will understand it!

So most people’s brain is like a relatively new, fast computer – it does things quickly and uses the latest operating system. It also works well over wifi. My brain however, uses an entirely different operating system, let’s call it “DYSP”. There are many different versions of this operating system. For some reason, despite the fact that this operating system is fairly common, not many people seem to know about it. Many people get it muddled with the operating system: ‘DYSL’.

DYSP is an operating system that works in a very unique way in comparison to other operating systems. However, it tends to share quite a few similarities with the previously mentioned ‘DYSL’ and also “AUTI”. These operating systems are all a sub-type of operating systems that come under the name ‘ND’. It is important to note, however, that the computers themselves look like any other computer from the outside. That’s aside from the fact that computers that run DYSP are unable to work over wifi, they have to use an internet cable. We cannot simply perform tasks without that wired connection between our brain and body, unlike other people. For example, I cannot simply cook a meal like other people can. I need to be given the exact instructions step-by-step. Other people seem to have these algorithms already built into their computer system, whereas computers that run DYSP need this algorithm to be programmed in step by step, multiple times. It is very easy to make errors when programming in this algorithm, but once the algorithm has been programmed in it works, most of the time…

Sometimes one line of the algorithm will be deleted and the information will need inputting again, especially if the algorithm is a fairly long sequence of steps. Dyspraxics often have difficulty remembering a lot of instructions at once, so for example whilst cooking we may completely miss out a certain stage. To compensate for this we often have to have instructions written down.

There are also simply times when random errors occur in the algorithm. Continuing on from the cooking example, there are times when things will be dropped and spilt – things that are definitely not in the programming code!

If a line of the code is randomly changed without warning, this can often cause the operating system to crash and go into chaos – i.e. a complete panic when our routine suddenly changes! The DYSP operating system is simply unable to cope with this sudden change effectively, whilst other operating systems can. The taxi not turning up to take me to the train station for uni was an example of this. This happened a few times and made me completely panic! Rather than thinking “I need to phone the company to let them know”, I would end up messaging my Dad, stressing out that I was going to be late for uni and my Dad would end up taking me to the station (I would phone the company whilst in the car after stressing out even more over what I was going to say…) Other people may also find this situation stressful, but for me to more of an extent.

The wired connections I previously mentioned can often get tangled and muddled, meaning errors can occur when transmitting the messages. This results in difficulties with co-ordination – our brain is telling our body to do something but that message does not reach our body successfully!

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DYSP can be a bit slower than other operating systems, although it does achieve the same end result for many things. For example school/uni work can take so much longer for us dyspraxics due to difficulties such as slower thought processing, but we often achieve the same results as others in the end.

Whilst there are some things that other operating systems perform efficiently, DYSP is unable to perform some of these tasks and often needs extra pieces of hardware to assist with this. Going back to the example of cooking, there are some tasks I am simply unable to do as I don’t have the motor skills or co-ordination to be able to do them – peeling and chopping vegetables is an example. The extra ‘hardware’ that can be used to assist with things involves items such as non-slip mats, or in terms of handwriting particular pen grips.

Computers will always find shortcuts to do things, and DYSP is no exception to this. Rather than using up extra processing time to do things in different ways each time, DYSP will always do things in the same way each time. For me, this even includes some conversations. One example my Dad pointed out was that when I ask if he would like a cup of tea, I always ask it in the same way each time – it’ll always be: “Would you like any tea or coffee?” whereas other people tend to vary things like this.

DYSP uses entirely different software to other operating systems, always doing things in a unique way, but it does have it’s strengths! These include efficient long-term data storage, a determination to carry on even when it keeps on crashing and simply the ability to do and perceive things differently! Remember, the hardware looks the same as everyone else’s so you never know who might be dyspraxic!

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“Have I just brushed my teeth or not…?”: Dyspraxia and Memory

Memory, in particular short-term memory, is something that dyspraxia can affect. This is a particular area where dyspraxia and dyslexia are closely linked, along with organisation (which is also closely linked to memory).

Seeing as I’ve learnt a little bit about the processes of memory at university (I’m studying psychology), I thought I would use a little bit of what I’ve learnt (with the help of my textbooks) for this blog. It’ll probably be a useful refresher for me for my next year of university too!

So short term memory, as the name suggests, refers to being able to retain information over a short period of time – roughly 15 seconds. This video provides a really useful overview of what short term memory is and how it can affect dyslexics (the same applies to dyspraxics too):

I also recommend you have a read of this blog post too: https://stormclear.wordpress.com/2015/06/12/the-white-board-and-the-etch-a-sketch/. It gives a great anaology of how dyspraxia can affect short term memory.

Being given directions is a typical example of something that can be difficult when you struggle with short-term memory. I haven’t actually been in a situation on my own where I’ve had to ask for directions (yet!) but whenever I’ve been with someone else and we’ve asked someone I’ve never remembered them! I’m okay with the first couple, but then after that they all just seem to jump out of order and disappear…

At university one of the things we learnt about is the serial position effect, which states that it’s the items at the beginning of the list and at the end of the list that are most likely to be recalled – the items in the middle of the list are most likely to be forgotten. This is because the items at the beginning of the list have been rehearsed over and over, so they have had the time to be transferred into long term memory. Whereas the items at the end of the list are so recent that they are still in short term memory (although I’m not sure they’d still be in mine!) Although we didn’t learn specifically about dyspraxia and memory, I do wonder whether this effect is still found in people with dyspraxia due to our difficulties with short term memory. I think maybe we would be more likely to remember items at the beginning of the list due to the fact that they are in our long term memory which we can rely on a bit better than our short term memory (I’ll go into a bit more detail about that later on in this post)!

The same happened at school too with completely forgetting a list of instructions. In science lessons at GCSE we would do practicals and they would sometimes decide it was a good idea to give us the instructions verbally. I didn’t have a clue what I was doing and always had to ask the person I was working with – I’m so glad we worked in pairs and not on our own! Even though they often gave a demonstration so there was the visual information too, it was just attempting to remember it that was hard!

More every-day things that it can affect are asking people whether they would like a tea or coffee. In my house it’s only me and my dad that drink tea/coffee, as my brother doesn’t, but I think I’d find it difficult in a situation where there were more people to remember for! I do sometimes find myself having to ask my Dad, “Was it tea or coffee you wanted?” What does help, though, although it sounds quite random is the fact that my Dad uses different mugs for tea and coffee. This means I only need to remember what it is he wanted from the time I ask him until the time I get his mug out the cupboard – there, your method has it’s usefulness Dad! I have actually seen mugs that you can get that you can write on – that might be useful for someone who has lots of people who drink tea/coffee in their household!

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I quite often even forget whether I have just done something or not. I’ll go upstairs and come back down and wonder if I did actually just turn the hot water on or not, or I’ll brush my teeth and a few seconds later wonder if I’ve actually brushed them or not. And then there’s the typical walking into a room and forgetting what you’ve walked in there for, or being midway through a conversation and forgetting what you were talking about. I know those last two things happen to everyone anyway, but they happen much more often when you’re dyspraxic!

As I briefly mentioned earlier, memory is closely linked to organisation. So although organisation is something itself that dyspraxics/dyslexics can struggle with, short term memory difficulties can impact on this even further. For example, I need to set reminders on my phone to remember to do things – but I’ll often say I’ll set a reminder, and then if I don’t do it instantly that second I’ll often forget to set it! I also have a tendency to, when the reminder does come up (if I’ve actually remembered to set it), turn off the reminder while I quickly do something else. Even if it’s just a few seconds that have been taken up I will usually completely forget about the reminder! For this reason I usually just use checklists on my phone – as they’re the first thing that come up when I unlock my phone and I’ve got into the routine of making sure I keep checking them.

Ironically, I literally have just thought of something else to write, but decided to finish the sentence I was writing first without writing the idea down and I have now forgotten it! Anyway, hopefully I’ll remember it at some point or I’ll come up with the same ‘idea’ again…

I also find that due to my difficulties with short-term memory I often end up missing out stages of tasks, either because I can’t remember what I’ve just done in the previous stage or just because it takes that little bit longer to register in my memory that I haven’t done a particular thing. For example there’s been times before where I’ve walked out of the bathroom or got into bed and suddenly realised that I haven’t brushed my teeth! I’ve even managed to make a sandwich and have forgotten to put the butter in! Or I’ve forgotten to actually put the tea bag in the tea or the coffee in the coffee – that usually happens when I do it in a different order to normal (change in routine has a big impact on memory for me!)

It seems as though one of the main things for me that affects my memory is distraction – I do get quite easily distracted too being dyspraxic! I learnt about an interesting study where participants who had slept after learning something (most likely a list of words) remembered more than participants who stayed awake. This was explained as being due to the fact that the participants who stayed awake had their memories displaced by other items so they have more difficulty remembering what they had previously learnt.

Despite the difficulties I have with short term memory, I bizarrely did well when tested on it! I took part in a study at university which studied participants with dyslexia or dyspraxia. There were all sorts of tests involved – a few of them were on memory. One of them was auditory memory, where a list of numbers would be read out loud and I would have to repeat them back in order. At another stage I had to repeat them backwards. The list of numbers was getting longer and longer and the person said to me that the reason it was going on for so long was because I was really good at it! I was surprised at that seeing as I struggle with my short term memory in other situations. I think, though, it was because I was in a test environment and all I had to think about was remembering those numbers. There was nothing else to distract me, all my attention was focused on remembering those numbers so I was able to rehearse them in my head over and over again. That test definitely wasn’t representative of my short term memory in other situations…

Long term memory, on the other hand, is often a strength of many dyspraxics! Again, as the name suggests, it refers to being able to maintain information over a long period of time – this could be hours, days, weeks or even longer. There are three types of long term memory: procedural memory, semantic memory and episodic memory.

Procedural memory stores ‘how-to’ information – for example how to play the piano, or ride a bike. It’s the information we retrieve automatically without even thinking about it. Semantic memory stores facts and concepts, our general knowledge of the world. Whilst we don’t retrieve this information automatically, it doesn’t take a lot of effort to retrieve it. Lastly, episodic memory stores events and experiences, our personal experiences. This information isn’t retrieved automatically and it takes a higher amount of effort to retrieve it in comparison to semantic memory.

From my personal experience, and from what I’ve heard from others with dyspraxia, it is our episodic memory that is our strength. It’ll often be the really random information I’ll remember, unimportant parts of conversations from years ago, including details such as exactly where the conversation took place too. One example I remember is when I was in year 7 one of my friends was telling me about an argument she had with another friend – I even remember where we were walking at the time. The funny thing is my friend doesn’t actually remember it herself!

Now obviously there are certain things from ages ago that we still forget, we don’t have some sort of superhuman brain that makes us remember everything. But, being dyspraxic means that our long term memory, our episodic memory in particular, does seem to be better than average.

I would love to know why this actually is, what specific part of our brain makes it better than average. Why does our long term memory make up for our short term memory? And how?

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But as this is an area that doesn’t seem to have been researched (as far as I’m aware), the answer to these questions remains unknown. I do wonder though whether it is to do with the fact that episodic memory works on a subconscious level, it’s done automatically. Maybe because we’re often more sensitive to our surroundings (in terms of both sensory & emotional sensitivity) the information gets encoded in our brains in some sort of more detailed way than it does for neurotypical people. Although I mentioned earlier that it takes a higher amount of effort to retrieve episodic memories, maybe for dyspraxics this doesn’t make so much of a difference as our problems may lie less in the retrieval aspect and more in the encoding aspect (this is just me wondering by the way – no scientific evidence here!).

This could explain why our long term memory is strongest in the area of episodic memories. If we take an example of a procedural memory, such as riding a bike, this is a physical task so it takes us dyspraxics a lot more effort to be able to store this in our memories. Our brain may send the incorrect signals to our bodies more often, so it takes us a longer amount of time to get the right movements enough times for this to be encoded in our brains.

The other type of memory, semantic memory, contains facts and concepts – relating a lot to education. In order to remember this information we need to be able to store the information in our short term memory in the first place (models of memory suggest that we initially store information in our short term memory and it is transferred into our long term memory). If the particular challenge we have as dyspraxics is getting the information into our short term memory then this makes it harder to learn that information, hence the reason it takes us a lot longer to learn things as we have to spend a lot more time and effort to get it into our short term memories. However, I do believe that once we have that information stored in our long term memory, retrieving it isn’t so much of a problem (well, not until it comes to organising our ideas and getting it down on paper!) So just beause we may have a ‘good long term memory’ that doesn’t necessarily make exams easy, as we have to work a lot harder to get that information into our memory in the first place!

I would love it if there was research done in these areas into the future, it would be fascinating to find out more about how our dyspraxic brains actually work!

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Natalie 🙂

 

 

 

 

Dyspraxia doesn’t change, but the environment does

Something I’ve noticed over the years is that my dyspraxia affects me differently. It’s not the dyspraxia itself that changes – dyspraxia isn’t a condition that gets progressively worse or better – it’s the environment and the challenges that come with that environment.

For example, the school environment had a lot of structure to it. There would be a timetable which I could go through to plan exactly what books I would need to take in that day. At that age there wasn’t very much outside of school that I needed to be organised about. This meant that I came across as being quite organised – this was something teachers would even point out in parents’ evenings etc. I would always remember the books I needed to take in that day. I think there were only one or two occasions where I forgot my planner or pencil case! Yet now organisation is something I really struggle with!

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There’s so many more things to think about now that don’t have a structure to them, whether it’s making a phone call or replying to an email. I know I should make use of reminders on my phone more, but often I find I forget to set a reminder in the first place!

Whilst I was in primary school I would notice that I was the last one to finish the race on sports day, but I wouldn’t notice how I struggled socially. As you get older you tend to become more self-aware of how your dyspraxia affects you, I think that’s the same for any disability. It can seem as though you’re struggling with more – sometimes I think “I don’t remember finding this difficult when I was younger”, but in fact it’s that when I was younger I didn’t realise I did certain things differently to my peers. I didn’t really understand how dyspraxia affects me in social situations until I was in secondary school.

Perhaps this self-awareness could be part of the reason why many people aren’t diagnosed with dyspraxia until they are much older (although I still think one of the main reasons is due to lack of awareness). Another reason could be education. It’s been mentioned to me that lots of people don’t realise how their dyspraxia affects them until further up in education when it gets more challenging and they realise how it affects their working memory, thought processing etc. This could make sense as to why many people are diagnosed as being dyspraxic whilst studying at university. Personally, although I was diagnosed as dyspraxic at an early age I didn’t really fully understand how it affected me academically until I was doing my GCSE’s.

One example I remember was in school in year nine when I started using a laptop in lessons. Someone asked me why I used a laptop and I explained why and they were confused as I didn’t use one in year seven or eight. It wasn’t that my dyspraxia had suddenly got worse, it was because in the lower years we did less writing. So, yes, I still struggled with my hand-writing before, but as the volume of writing required got bigger it was something I struggled with even more, finding it harder to keep up.

Whilst the academic subjects get harder as the years go on, physical subjects like P.E. stop when you get to the end of year 11 (unless you take it as a further option). This means that you’re not compared to your peers so much in terms of your physical ability, so you’re not reminded of the fact that you find it difficult to catch a ball, for example. For this reason you may not notice the gross motor affects of dyspraxia so much anymore.

Dyspraxia is not something you ever grow out of – dyspraxic children grow up to become dyspraxic adults, but over time there may be certain coping strategies you develop to help with certain things. This might mean you don’t notice certain difficulties as much. An example is shoe laces. I used to struggle with my laces, but now I use laces with a magnetic closure. So although I know that I do find shoe laces difficult, I don’t necessarily experience that difficulty now.

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However, as you get older there are different challenges that arise as you start to become more independent – things like making phone calls. Something else that I’ve noticed as I’ve got older is how a lot of things that are involved with being independent seem to come so much more easily to others. I’ll often find myself asking others how to do things that other people seem to know how to do straight away.

In addition to the long-term differences, there are also differences from day to day. Although earlier I said that dyspraxia itself never changes, there are some days that can be ‘typical dyspraxic days’ where everything seems to happen 10x more than normal – constantly tripping over, dropping things, getting words muddled up. This can be made worse by being tired or stressed.

Dyspraxia is never something that can be grown out of, it will always be there, but it comes with different challenges over time.

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Oh and for those of you who might find it amusing, seeing as we’re talking about dyspraxia over time, here’s a video my dad made for my 18th birthday last year. Spot the dyspraxic moments! 😉

Natalie 🙂

 

 

Dyspraxia Foundation ‘Call to Action’ Appeal

The Dyspraxia Foundation need your help!

With funding being cut they are in urgent need of your donations to help continue the vital work they do. Today they have launched an appeal, “Call to Action” with a message from Jamie Lambert (from Collabro): 

Please donate and share to help spread the word!

https://campaign.justgiving.com/charity/dyspraxia/appeal

Natalie 🙂

 

 

A dyspraxic weekend in London

This last weekend was a very dyspraxic weekend! And no, I didn’t keep tripping over things or getting my words muddled up…that wasn’t quite what I meant! On Saturday I went to the Dyspraxia Foundation’s AGM/Conference in London and on Sunday I took part in the British Vitality 10k, again in London, to raise money for the Dyspraxia Foundation.

I had never really considered doing a 10k before, being dyspraxic means running a long distance isn’t really my sort of thing! However, a few months ago me and my Dad heard about an event in London in September called ‘Parallel London’. It’s a fully inclusive event, you can choose a variety of distances and you can either walk, run or push (for wheelchair users). Me and my Dad thought it sounded great and considering it would be around the Olympic Park too it would be a brilliant experience. So we decided we would walk 10k and do lots of walks over the summer in preparation. A few weeks later I then heard that Rosie was looking at entering the British Vitality 10k if anyone was willing to walk it with her. I looked on the website and saw that you get to go past some great sights in London and it would be a perfect opportunity to raise funds and awareness for the Dyspraxia Foundation, so I said I would do it with Rosie. I will also still be taking part in the Parallel London event, which I’m really looking forward to!

I then wasn’t sure what to do about the day before, when the Dyspraxia Foundation had their AGM/Conference. As it was being held in London, I really wanted to go to it (especially as I had never been able to make it to any of their events before) but I had the dilemma of making myself too tired for the 10k walk the next day. This year I became a member of the Dyspraxia Foundation’s Youth Focus Group, where young people with dyspraxia discuss ideas and plans for people aged 13-25 with dyspraxia. There would be a room booked at the event on Saturday for the Youth Focus Group along with other young dyspraxics who wanted to come along and discuss ideas. So I decided that I would stay for the morning on the Saturday so that I would be back during the afternoon, meaning that hopefully I wouldn’t be too tired for the next day.

My plan was to get the train tickets on the Friday before I went, so that it would be less to think about on Saturday morning. But guess what? Me being a typical dyspraxic meant I completely forgot! This was also my first time travelling to London on my own which when I first thought about seemed quite daunting. Me navigating the tube on my own…would I get lost? Would I have a clue what I was doing?! Me and my Dad went over the route on Google Maps beforehand and I knew what train line I needed to get etc. and luckily the route seemed quite straightforward with no changes. I definitely felt a bit more confident about it after having gone over the information I needed to know.

The weekend came around quite quickly actually! Saturday morning was an early start, although not ridiculously early, at 7:00. When I got to the train station I had to message my Dad to double check I was buying the right ticket. I thought it was but as the name of it was slightly different to what I thought, I wasn’t 100% sure.

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It felt strange travelling into London on my own, but it actually turned out to be a lot easier than I had thought. The various times I had been into London before with my Dad and brother it had all seemed so complicated. I think because I knew exactly what line I had to get beforehand that made it simpler too. So I managed to get there without getting lost! All I had to do now was walk out the exit to meet Rosie, her Mum, Matt and Alice and we would walk down to the AGM/Conference. Except I couldn’t see them! I walked around, back out to the other side of the tube station but had no idea where they were. Eventually after messaging Matt we realised that they had been quite near the whole time, it was just that I hadn’t realised you had to go up the set of escalators outside! It wasn’t until I got home later and was talking to my Dad that  we realised there were two exits out of the tube station, and the one I had come out of was actually the opposite side to the one I needed (which was why after going up the escalators we then had to walk around the corner and down some steps into a different bit!) It was a good job I did meet everyone there, otherwise I would have walked out of that exit, turned right down that road and wondered where on earth I was!

We still got there in good time though, we were there for about 10 minutes before the AGM started. It was typical that I couldn’t stop coughing during the AGM when it was quiet, and afterwards when it was a bit louder I was fine! We then went into a separate area booked for Dyspraxia Foundation Youth, where there were about 10 of us altogether. We were mainly discussing plans for creating an awareness video and arranging a meet up for young people with dyspraxia in October. When the glasses were brought in someone made the comment “I wonder which one of us will break them first!” Haha! I’ve only been to two meetings with the Youth Focus Group so far, one of them I couldn’t make due to travel, but it’s been great being part of it and being able to discuss ideas. It’s quite funny thinking back to when I was around 8 years old and my Dad was telling me about a really good website about dyspraxia he had just found (The Dyspraxia Foundation website), I wouldn’t have thought that 11 years later I’d be helping to think of ideas for it (well, the youth section of it)! If you haven’t already, take a look at the youth website and if you’re someone aged 13-25 with dyspraxia feel free to join the Facebook group. Also what’s great is being with people who “get it”. Although I was only there for the morning, so unfortunately didn’t get to chat people that much, it was lovely being surrounded by other dyspraxics and knowing you’re not the only one. I will definitely have to come to one of the Dyspraxia Foundation conferences for a full day at some point!

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The timing worked out quite well actually, as the youth part of the day only went on for the morning so after lunch I made my way back home. I managed to navigate my way home successfully, I didn’t go out of the wrong exit this time or miss any escalators either! The only annoying thing was that when I got to King’s Cross station I must have just missed the train home because the next train wasn’t until another 45 minutes! I was then meant to buy my train tickets for the next day on the way out of the station before I walked home but I forgot, again! So after getting home and having a cup of tea, I went back out again to the train station again to get the tickets.

I was surprised how tired I was that evening. I didn’t expect to be so tired considering I only stayed for the morning, but I probably would have been even more tired if I had stayed for the whole day. Although according to my fitbit I had done a total of 14,328 steps that day – so that could have something to do with me being tired!

Seeing as I was so tired I got to bed quite early at 9:45 and read for about 15 minutes, imagining I would get to sleep quite quickly. For some reason, though, I still took over half an hour to get to sleep!

The next morning was an even earlier start at 6:15, as we had to catch the 7:56 train. The weather wasn’t looking too good while me and my Dad were walking to the train station, as it felt really humid. I met Rosie and Matt at St James’ Park and we walked over to the timing pens. It was amazing how many people were there taking part. I knew there would be a lot but I didn’t expect it to be that many! There were so many different charities too. Apparently as someone walked past me they pointed my t-shirt which said “Dyspraxia Foundation” on the back and said “Awesome!” We then saw someone else who was running for the Dyspraxia Foundation, so we chatted to her for a bit before going into the timing pens. My Dad brought his 360 degree camera with him. Holding it up high in the air with a selfie stick resulted in lots of people looking up and waving at it – brilliant! I wish I could upload the 360 photos/videos on here but unfortunately I can’t as WordPress doesn’t support that format yet.

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We then heard the blue runners start (we had either blue or red numbers depending on speed) and after a while we started to make our way over to the start line. The crowd seemed to all merge into one at that point, so there didn’t seem to be much point in the timing pens! We were towards the back of the crowd which was good. Although I’ve never put it down to dyspraxia (not sure whether it actually could be due to the sensory aspects?) I feel really faint and dizzy when I’m in a hot and crowded place, and have to find somewhere to sit down (even if it is on the floor!) Luckily it wasn’t humid at all. It did rain during the 10k but that was actually quite nice and refreshing! As we were walking towards the start line someone came up to me and Rosie and asked what dyspraxia was, so at least we helped to make one more person aware!

095500.jpgWe then heard one of the commentators reading out the names of the charities on people’s t-shirts, so me and Rosie decided we would wave and get their attention to get them to read out The Dyspraxia Foundation, and they did!

Eventually we got to the start line – I had done about 7,000 steps before I even got there! It wasn’t advertised as being a fully inclusive event unfortunately, but we did see someone in front of us walking with a prosthetic blade who unfortunately fell over at the start, but she got up and completed the race. Someone else in front of us was walking the 10k for the National Autistic Society, and you could tell it was very overwhelming sensory-wise for them as they were putting their fingers in their ears. I thought it was amazing that they did it though considering how much sensory information there was.

Most of the crowd were very supportive, but we did have someone (who I think was working there) say to us “Stop talking and start running!” I know he said it in a half-jokey way, but I bet he wouldn’t have said it if we had a disability that wasn’t hidden! We were talking a lot to keep each other going! It worked because when we got to the 2k mark we were both surprised as we hadn’t even realised we had passed the 1k mark yet!

The crowds weren’t too busy (they were probably a lot busier towards the start of the race) but there were always people clapping and cheering us along. It was nice (but strange) to be walking in the middle of the roads in London too and it was brilliant getting to see the sights as we went along.

115338At one point we were offered a lift (in a car there for the event) the rest of the way! Maybe they thought we were running and struggled so were walking or something! But we carried on walking till the end!

orig-BRIO4960.jpegThere were times when people cut in front of us, at one point someone cut across directly in front of us with suitcases. Not ideal for dyspraxics who struggle with spatial awareness!

Some of the team from the Dyspraxia Foundation came to support all of those who were taking part to fundraise for them (there were 11 of us altogether). As Rosie said to me, it was nice knowing they were there towards the end of the route motivating us to finish! Before we came up to Big Ben (where the supporters were) Rosie’s mum came up to us and suggested sprinting past the Dyspraxia Foundation. We didn’t quite sprint but we did do a bit of a jog!

My Dad took photos of me and Rosie throughout the route, he walked parts of the route and waited for us at certain points. It was quite funny because I wasn’t keeping track of where he was, he just kept appearing at random points! It’s great to have so many photos from the event – thanks Dad! But then again, when would my Dad ever go to an event and not take photos? 😉

After going past the Dyspraxia Foundation supporters we didn’t have long to go. We were slightly confused when we came up to the 9k mark though about five minutes later, as we thought the supporters were at the 9k point!

We couldn’t quite see the finish until we were right near it. The last part seemed to go on for ages, we didn’t know when we were going to get there! The comment from the commentator made us laugh though, she said something like “Look at these girls having a proper gossip on the way round, they probably stopped off for a cup of tea” – the best part is it’s even on video!

orig-BRIM8291Once we’d crossed the finish line we were given a medal, a goodie bag and a t-shirt – and a much needed lucozade! We then walked over to the pub, where the Dyspraxia Foundation had a room booked upstairs. After walking 10k the 10 minute walk to the pub felt like the longest walk ever!

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We got to the pub, had some sandwiches and had a photo taken of all of those who took part for the Dyspraxia Foundation, after which the certificates were handed out. Whilst I was there I had a look online to see what my time was for the 10k, and it said “DNF”! I was quite worried about that, as I knew for a fact that I did finish! It must have just been like that before the time was processed though, as it soon updated and I finished in a time of 1 hour 56 minutes (and one second)!

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This time, unlike the day before, was perfect timing with getting the train home as we got to King’s Cross 5 minutes before the train departed! I didn’t have any tickets to remember to buy this time either. I sorted my stuff out as soon as I got home as I knew that as soon as I sat down I wouldn’t want to do anything!

After that I sat down, had a much-needed cup of tea and looked through photos! My legs were hurting/aching so much (I did a total of 27,124 steps yesterday) but it was a great day which I really enjoyed!

Me and Rosie even had a tweet from Mollie King from The Saturdays to congratulate us!

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Thank you to: Rosie (we kept each other going with our chats throughout the 10k!); the Dyspraxia Foundation and everyone else who came down and supported us; and my Dad who walked 75% of the route himself to get photos of us! And of course, a huge thank you to everyone who generously donated! Although if you would like to, there is still time to make a donation.

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Alice and Janet, who also had “a very dyspraxic weekend”, have also written some really interesting blogs about their weekend, which can be found at the following links: https://alittlemoreunderstanding.wordpress.com/2016/07/11/general-life-reflections/ and  http://dyspraxicadult.blogspot.co.uk/2016/07/dyspraxia-foundation-adult-advisor-im.html. Since writing this blog, Rosie has also blogged about the weekend, which can be found at the following link: http://thinkoutsideofthecardboardbox.blogspot.co.uk/2016/07/looking-deeper-to-understand-dyspraxia.html.

Here’s my personalised video from Sunday (featuring the amusing comment at the end!):

Natalie 🙂