Eleanor Howes, CEO and Sophie Kayani, Chair of Trustees would like to thank our members and supporters for making Dyspraxia Awareness Week 2018 such a great success. Our focus during the week was specifically on the teenage years and their mental health. We saw some very moving case studies shared and were contacted by many people thanking us for sharing. Thanks goes to the parents and teenagers who were willing to highlight their stories, it’s not always easy to be so honest and open. We were extremely lucky that media coverage increased dramatically this year due to the co-incidence of the new Doctor Who series featuring a character, Ryan who has dyspraxia/DCD. This has given us the platform to increase awareness amongst the general public and improve understanding of the condition, which can only be a good thing.

Our thanks also goes to our dedicated Youth Group who have been extremely supportive, willing and open to discuss all things dyspraxia. We’ve now appointed three Youth Champions Imogen Rowe, Tim Trivizas and Natalie Williams who will work with us over the coming year to continue to raise awareness.

Finally, our focus for 2019 will be Adults. Please keep an eye out for a request from our Trustee and Adult Representative Mark Robinson with how you can get involved and help us shape the specific topics Adults would like to see covered during next year’s awareness week.

Thank you
Sophie Kayani and Eleanor Howes

To extend Dyspraxia Awareness, this morning trustee Sally Payne and youth member Ben, appeared on BBC Breakfast to discuss Dyspraxia and Doctor Who! Thank you to the BBC for providing us with the clip which you can watch below:

Remember, Ryan and the rest of the Doctor Who cast, continue their time travels this evening on BBC One at 6.55pm!

Alfie Aged 14 –  A letter To The Teachers

Dear Teachers,

I thought it would be helpful to let you know a bit about me and my experience of dyspraxia because dyspraxia can be hard to understand unless you have read a lot about it, or know someone with it.  And because everyone is different.

Although I tend to do quite well in most of my subjects, my school reports always comment on my organisation, concentration and prep.  These things are genuinely difficult for me and sometimes, because I can look pretty laid-back, it can look as if I’m not trying as hard as I should.  I’m not always aware when I’m stressed and last year only realised how hard I was finding things because I kept getting a lot of headaches.  I’ve also been told by quite a few people that they find it hard to ‘see’ my dyspraxia.  I think that’s because I often turn things into a joke, and until now I have found it hard to understand it myself or talk about it properly.  Although I like it when my difficulties aren’t obvious, other times it’s hard because it can look as if I’m not working hard enough or being lazy.  I am a teenager so I am sure there are times when I could work harder, or am just being a bit lazy, but more often than not I really am trying my best.

I was diagnosed with dyspraxia when I was 10 years old, and I have found it helpful to learn more about the diagnosis because it helped me to understand why I struggle with some of the things I do.  I used to think that I wasn’t good at things, but now realise that I can be as good as anyone else, although with some things I have to work and practice a bit harder before it becomes as natural to me as it does for others.   I sometimes don’t mind having dyspraxia, because it’s just me and the way I am, but other times I can get very frustrated with myself because I can’t always do things in the way I want to.

So, I will try and explain a bit about what it is like to be me because I really do want to do my best this year.  I will start off with explaining some of the difficulties I have and I have attached something me and my mum wrote for teachers last year, with some of the me of the strategies I find helpful if I’m struggling.

One of the biggest things that I find difficult is my coordination; I am not always as coordinated as I would like to be because my brain doesn’t always send straightforward signals to my body.   This means that I can easily fall over, to the extent that I can almost even fall over a pattern on a carpet!  I have been to A&E quite a few times with a number of injuries from doing simple, every day activities e.g. falling downstairs, falling upstairs, tripping over and basically bumping into pretty much anything and anyone; in my world, it’s as if walls and door frames move without warning.  I almost fell off my chair in orchestra once!  I like sport but when I play football my kicks aren’t always very accurate, so when aiming to pass the ball to someone, I can often miss. So, I don’t often play football now.  I’m better at throwing things than kicking, so enjoy basketball and things like crazy golf because my aim can be quite good.

My fine motor skills are also tricky with certain things, so I can end up easily knocking things over and spilling things. I can obviously use cutlery, but I struggle to use a knife and fork in a typical way and can sometimes end up elbowing the person next me without meaning to; I find it hard to tuck my elbows in when I eat and often prefer to eat with my fingers.  Eating peas with a fork is almost as tricky for me as it would be for you to tie your shoelaces with one hand.  I am quite good at laughing at myself, but sometimes when I do things like spill my food down myself, or hurt myself, it can be pretty embarrassing; so I might laugh on the outside but I don’t always feel that way on the inside.

During lessons, other things I can find quite tricky are: copying stuff off the board in the time allocated (which can mean that I don’t always manage to get the right information written down for my homework or revision) because I often lose my place when I’m trying to get the words down from the boards into my book, concentrating (especially if there is a lot of noise or activity going on), and following multiple instructions if they are given to me verbally, rather than written down.

My writing is sometimes a bit (or even a lot) scruffy if we have to write a lot, or write fast.  When I have to write a lot in a short space of time, my hand starts aching and hurting because I can’t always figure out how much pressure to use with my pen or pencil.  Most people write using their fine motor skills, but I often make bigger movements when doing similar things – this is not because I want to, but just because this is how my body works.  In order to keep up at times, I often slouch in my chair, or lean over my work, which might look like I’m not working as hard as I actually am.  In maths, I often know how to get to the answer of a sum, but can find it difficult to write down my workings out – it can look like I have been lazy by not doing the workings out, but sometimes I find this bit the hardest, I think this is something to do with how my brain organises information.  I can do it, but it can take me a little bit longer than other people sometimes.

Also, when I am writing longer pieces of work, I can find it hard to know where to start unless there is a structure to the essay, and can regularly forget my punctuation because I’m trying to focus on other things like: what I am wanting to say, spelling and how to organise my thoughts on paper.  Once I get started though, I’m mostly ok.  I feel pretty stupid when I realise that I have forgotten to put in even the simplest punctuation. Teachers can sometimes get frustrated with me for not writing enough, and when I don’t finish my work at the same time as everyone else, but I really am trying my best (most of the time).  It can help me if I can use my laptop for written work, not just because of the neatness, but also to help me with the organisation of my work because I can then cut and paste things as I go along.   Just in case you are wondering, my Mum has helped me with how to structure this, but the thoughts and ideas are all mine.  So, although I might look as if I haven’t done as much work as everyone else, it may have taken me three times the effort and energy to complete what I have.  With the help of my teachers, and practice over time, I will be able to do it, so please don’t expect less of me, just be a bit more patient with me and I will get there. It’s the same with playing the violin – I’m left handed and dyspraxic, but because I have done a lot of practice over the years, I am now as good as my peers.

My concentration is also a big challenge for me, and I know it’s annoying for other people too.  I’ve been told that it can look as if ‘I am not interested’, ‘don’t care’ or ‘am not listening or paying attention’.  I really don’t mean to be rude.  My mind goes blank sometimes, or wanders off to other things that might distract me – either things going on around me, or just thoughts in my head.  The best way to help me at these times is to maybe distract me from my distractions by asking where I’m up to with my work, or to get me to work with someone else who I trust, who can subtly draw my attention back to the work.  If someone calls my name, or comments on me not concentrating, I find this really embarrassing because I feel as if I’ve been doing something wrong and then my focus is on the fact that I’ve not been concentrating, rather than the work.  If I have been sitting still for too long, that can also make me find it harder to concentrate, so having the opportunity to get up and have a walk around the class, like giving me a job to do (my OT calls it a ‘movement break’), can help my brain wake up.

Homework can sometimes be a problem.  Sometimes I forget to do things because I haven’t managed to write everything down and remember what was said, sometimes I write it down and then lose the piece of paper and sometimes I don’t lose the piece of paper but can’t read what I’ve written because I rushed to try and get it all down.  And sometimes I have no problem doing the homework but then forget to hand it in!  Handouts and reminders (verbally or by email) can really help.

I can also find it difficult to organise myself e.g. forgetting to bring the right things to class, especially if they are not the usual things I need for every lesson. I’m not meaning to be sloppy, careless or lazy, and to be honest, I probably find it more frustrating than you when I don’t have what I need.

The teachers who know me, will know that I can fidget a lot and find it hard to sit still, especially when I’m tired, or am having to concentrate a lot.  My fidgeting can look like I’m not paying attention, but it can actually be the thing that is helping me to concentrate – although I can get distracted by my fidgeting if I’m not careful; I am trying to work on this by giving myself short times when I’m allowed to fidget and then stopping myself when I’ve got it out of my system.  Fidgeting is like a mini movement break for me, and can help to wake my brain up, unless the thing I’m fidgeting with becomes too interesting! Feel free to tell me to stop if it’s getting in the way of my work.

There are a number of strategies that I can use, though sometimes I need reminding to use them.  I really don’t mind being reminded, and as with anything else in life, the more I am reminded, the more I will then learn to remind myself.

Thanks for reading this and I hope this helps a bit to understand me and how my brain works.

Alfie (year 9)

Marian talks about her experience of supporting her 11 year old son

My Son has always been difficult in nursery and school situations. He is always getting into trouble with teachers. I believe that is because he ‘looks normal’ and has always been very tall. They say that he talks when he shouldn’t, doesn’t pay attention, lacks concentration, fidgets, doesn’t sit up straight, makes noises, etc.

I believe that because he’s quite smart academically. His behaviour and how he interacts, they think is deliberate.

The last letter received from the school describes him as ‘low level disruptive’.

I have tried to work with the school as much as possible but they do not acknowledge this condition. At home he needs more attention and consideration than my other three children. It can be very exhausting. I don’t have the same issues with him that the school report. However, I do need to organise him and check that he completes his daily activities.

He seems not to engage well socially because he is slow to respond to questions etc., but then, he says something that shows he’s more aware than he seems. We have followed OT advice and have always kept him active which has helped with his motor skills. He also plays two musical instruments which he has been quite successful with. He has a small group of good friends at primary school none of whom are going to secondary school with him (Sept. 18) so I am worried about how he will settle in. I also worry about his future.

Despite this, he is happy and has got great support from his brothers and sister.

This awareness week is really important as most people I meet are not aware of this condition.