Personally, co-ordination doesn’t impact me in a significant way; on a daily basis, I don’t notice it much as the verbal side of dyspraxia affects me more. It’s only when it comes to participating in co-ordinated and sequenced activities that I really notice it affects me in a major way!
Recently, I’ve taken up yoga mainly for the wellbeing and relaxation side of it but also for the flexibility and physical strength and exercise. I’m enjoying this and it’s meeting my expectations so I’ll definitely continue, but it’s sequences like this that I noticeably really struggle with! I’m the one that gets left and right muddled up, and I find it difficult to keep up with the instructions and process them quickly enough, as it’s quite fast. There are a number of movements I cannot do like everyone else, including balancing on one leg. I’m wobbling all over the place and getting my left and right confused! People trying to guide me with instructions doesn’t help, as I always do the opposite of what they say due to my slow processing. It was really embarrassing and awkward when I was singled out at the last session, clearly doing the movement completely wrong! Nevertheless, I hope I will improve the more I practice it.
My difficulties with co-ordination and taking part in sequences have affected me throughout my life. I can clearly remember a number of examples over the years in sports and exercise that I’ve tried where it has affected my ability – including zumba, physiotherapy and school sports – no wonder I was always picked last in PE and no one wanted me on their team. I was absolutely appalling!
Sensory Integration Therapy
When I was younger, I went to a number of sensory integration therapy sessions. This theory basically benefits children whose sensory integration hasn’t developed efficiently as it should have done by exposing them to sensory stimulation through structured, repetitive activities carried out by an occupational therapist. In my case, the play activities helped me to plan and carry out movements which improved balance, planning, following instructions and distinguishing left and right. I believe it really helped me with my development, and I had the advantage of finding it really fun! I never managed to comprehend why I was taken out of school one morning a week to do fun activities, when my brother and sister remained at school.
Nevertheless, there isn’t a cure for my difficulties with co-ordination and sequencing; this was only a treatment, which was beneficial and aided me a lot but I’ll always struggle to some extent. I may never be the best at yoga, or any other sequenced and co-ordinated sport, but as long as I enjoy it I don’t mind!
World Keratoconus Day (10th November) highlights the importance of fundamental awareness and pioneering research. Without it, improved treatment options and hopefully a cure in the near future wouldn’t be possible. Keratoconus has complicated my life in many ways, including:
Distorted vision
Put simply, my right eye is so distorted to the point I can’t see anything out of it; the world is just one massive blur. My left eye isn’t anywhere near as severe – I can get by with the vision in the one eye day to day, but even then it’s not perfect. I get double and blurry vision, particularly noticeable when I’m concentrating on something such as the TV or looking at directions/signposts. To be able to see the TV clearly, I have to really squint my eyes, shut my useless right eye and tilt my head. This is very frustrating!
Due to my right eye not seeing at all and my left eye having to compensate and do all the work, my rubbish eye tends to drift – it often isn’t aligned with the other eye (especially when I’m tired) which has caused me to feel very self conscious and anxious. It is the reason why I often don’t like photos being taken of me, and why I’ve given up taking selfies! I wish they would work together more, it would give me much more confidence!
My right eye ‘vision’ resembles advanced keratoconus and my left eye, early keratoconus
Dry eyes
This is a big factor of my keratoconus. Due to the bulged shape, the natural tears your eyes normally make can’t reach around the whole eyes. As well as this, my eyes have never shut fully – even while sleeping, which means my eyes regularly dry out at night and I inevitably frequently wake up with very sore eyes, despite applying a considerable amount of ointment every night!
Eye drops and ointment have become part of my life. Having to regularly apply them doesn’t bother me anymore, as it did prior when I was a teenager. I’ve got so used to them over the years, it’s just become a natural thing for me to do and I can’t imagine not having them now – an insane amount of eye drops during the day and ointment before I go to bed. It’s the cost of the prescriptions that bothers me; having dry eyes is really expensive and I didn’t choose it!
Very dry, sore eyes is the reason I can’t tolerate contact lenses. I’ve tried multiple ones and they have just aggravated them further, therefore I don’t bother with them. I wish I could get used to a lens for my right eye as I know I’m missing out on vision, but I never got on with them so I currently don’t wish to pursue lenses unless I have to, although this view may change!
Winter is worse for my eyes – heating really aggravates the dryness and soreness. Heating is a necessity and I love it, but it really doesn’t agree with them! Prolonged computer use also has the same effect.
Endless hospital appointments
Check ups, scans, endless lights being shone in my eyes, drops, vision tests in the Ophthalmology Department of Solihull Hospital – these appointments are the bane of my life. I understand it’s necessary and very important to regularly monitor the disease to ensure that it’s not progressing, but it’s tiresome. On the plus side, it is reassuring to hear that the keratoconus remains stable. Afterwards, I always get a grab bag of wotsits and a coffee to cheer me up. This incentive helps!
Anxiety
On 18th February 2015, I underwent the corneal collagen cross linking procedure to halt the progression of this condition. So far, it has successfully stabilised the keratoconus meaning it hopefully won’t deteriorate my vision further. Despite this, I still have the anxiety of it progressing further to the point where my left eye basically blinds me like my right one has. I fear that my driving licence could be revoked so my independence will be lost. This operation wasn’t pleasant but so far it has been worthwhile. I just hope that it stabilises it forever.
Corneal Collagen Cross Linking (CXL)
Why I consider myself to be lucky
Despite my struggles with this disease, I consider myself to be a very lucky sufferer; I can drive. That’s all I ever wanted.
I know the pain of not being able to drive; I started learning aged 17 like everyone else around me and loved it. I booked my test for January 2017, eager to pass and get my dream car so I could be more independent. It was the winter of 2016 when I got absolutely devastating and life shattering news – my vision wasn’t up to the required standard to drive, so I had to cancel the test. This wasn’t a shock; I’d feared this would happen all along, but it was something I found very difficult to accept regardless, especially since I’d already started to learn and knew how much I enjoyed it. It was horrific to watch my brother learn and pass, when I couldn’t get behind the wheel. I was in a very dark place in my life and was really struggling with the concept of not being able to drive. I couldn’t come to terms with it and move on, I was broken with the prospect.
Eventually, with a lens, I reached the required 20 metre standard and passed. Many months later, miraculously I discovered I could read a number plate from the required distance with glasses with my left eye, as it isn’t nearly as distorted as my right eye. The law states that you only need one eye up to the standard to drive, and I met this. Not having to wear a painful lens to drive makes my life so much easier and better in every way.
On the recent Fight for Sight Community Day I attended in London, there was a discussion about driving. Many other patients and their relatives with keratoconus said they couldn’t drive, and how life limiting it was having to rely on lifts and buses everywhere they went. Even if I found it easy to join in and express myself verbally, I wouldn’t have contributed to this topic as I felt so bad for them. I’d gone through all that and somehow it all turned out great for me. I felt guilty and bad that I was able to and they weren’t and almost certainly never will. It put my life with keratoconus into perspective and made me feel very grateful for what I had and could do. It doesn’t limit me as much as many other sufferers. Nevertheless, it isn’t easy to live with and I’m endlessly praying for a cure!
This week (12th-16th November) is Anti-bullying week.
Since we stand out as being different, dyspraxia can make us an easy target for bullying. When I was at both primary and secondary school, I was fortunate of the fact that I was never severely bullied over a long period of time, although that doesn’t mean I was completely immune from the issue.
Looking back, I remember being very unhappy at my second primary school that I went to due to not having friends, feeling like the odd one out and being bullied by someone in my class – to make things worse, the teacher never recognised it was happening and so failed to rectify the problem. This bullying presented as both physical and verbal – pushing/shoving me as well as nasty name calling and mocking my voice. I did also have the occasional comments from pupils in different year groups who I didn’t know very well; when I spoke they would say ‘why do you speak like that?’, and ‘speak properly’ as they laughed at me in a mocking way. I hope that they wouldn’t treat differences like that now that they have grown up and (hopefully) matured! Children often don’t understand the fundamental values of treating everyone with respect etc, which is why it is so important to educate them on the importance of equality and being nice, and the potential devastating consequences bullying has on individuals.
Secondary school was generally better as I made new friendships and gained a better understanding of my dyspraxia. I was diagnosed aged two but I personally didn’t have the understanding of it until I was around thirteen, when my mum explained it to me in the car one day and I did further research. Suddenly, everything clicked as to why I found things more difficult than everyone else. It made sense why I went through years of speech therapy when no one else did and why I originally went to a different school to my brother and sister to have this, why I learned differently and more slowly than my peers and had to put in extra effort into everything I did. This helped me with my self esteem in some ways, as I discovered it wasn’t my fault and I wasn’t weird, there was a reason for this level of difficulty.
However, I did still have instances of mean pupils physically and verbally bullying me throughout my five years there. In particular, in year 11 I had to deal with a bad case of bullying which coincided with my eye condition diagnosis and difficulties there, and the stress of GCSEs – it wasn’t a good ending to my time there, which was unfortunate as I had gone through good times there as well. Likewise with primary school, I felt that they didn’t really do anything to stop it. These cases of bullying that I experienced throughout my school years has affected me to this day; it has knocked my confidence and self esteem, increased my social anxiety and perhaps contributed to my feelings of worthlessness – it has a detrimental emotional impact on individuals.
It is also vital to understand that bullying isn’t just in schools: it can happen at work to adults too, as well as online and it can take many different forms. I wouldn’t necessarily say I was bullied in my last workplace, but I was discriminated against and treated unfairly by some members of staff due to my verbal difficulties.
Dyspraxia can also more likely make us feel victimised. Even if something is only mildly unkind, I can process it as severely bullying due to my sensitivity and longing to be accepted for who I am. We can be more prone to go through an emotional turmoil as we sometimes cannot process the world around us, making our perceptions exaggerated and distorted.
A few bullying statistics
83% of young people say bullying has a negative impact on their self esteem
45% of young people experience bullying before the age of 18
Children and young people with SEN are twice as likely to be bullied
Individuals who have been bullied are at the greatest risk for developing health problems in adulthood, over six times more likely to be diagnosed with a serious illness or a psychiatric disorder compared to those who have not been bullied
An estimated 5.43 million young people in the UK have experienced cyberbullying, with 1.26 million subjected to extreme cyberbullying on a daily basis
64% of young people across the UK have experienced and been affected by bullying whilst at school.
This year, anti-bullying week’s focus is on the theme of respect. This will highlight ways to challenge it/respond to it and prevent it. To find out more about how you can get involved and support this campaign, visit the Anti-bullying Alliance website for helpful resources and information. We should all stand up to bullying and raise awareness that it will not be tolerated anywhere, spreading the message to encourage everyone to think twice about their actions and the consequences that they will inevitably have on individuals. We may all be different, but we are all equal. Having dyspraxia or any other type of difference doesn’t make anyone less worthy of respect and equal treatment.
Passing your driving test is one of the best feelings ever for anyone, but when you’ve gone through a lot to get to that point it makes it even more meaningful.
Before my 17th birthday, I was worried I wasn’t going to be capable of driving. It was one of the things dyspraxic people are said to find too difficult, with most having to learn in an automatic. Too much coordination. I was surprised when I found it no harder than my twin brother and was so pleased when I discovered I could drive a manual car and started having regular lessons. I passed my theory test just after my eighteenth birthday and I was ready for my practical, the next and final step to getting my full licence, being a qualified driver and being on the road unsupervised.
In November 2016 I was in a particularly dark place when I found out I had to cancel my booked January driving test as I didn’t meet the required standard for vision, despite previously believing I was able to read the number plate without a lens. I was really struggling with the prospect of not being able to drive, it felt overwhelmingly tough with every visit to the eye hospital ending with bad/unclear news. I’m surprised I didn’t have a breakdown! Meanwhile my brother was learning and passed his practical test first time, and although I was pleased for him I was really broken inside.
In March 2017, I got an RGP lens. This is, at times, very uncomfortable – it took a while to get used to, and that still didn’t guarantee to get my sight up to the legal requirement. Shortly after my marathon success in April, the lens was a tiny bit more bearable and I got the prescription altered. Although I doubted it all along, I read a registration plate from 20 metres! I think that because I didn’t want the crushing devastation again of thinking I could drive, then not being able to, my mind was preventing me from believing it right up until my first practical driving test in July. I’d practiced a lot along the areas roads and although I felt sick with nerves, I was prepared.
On the whole the first test went really well; I did the manoeuvre perfectly and the general driving was good with only a few faults. Probably due to nerves, I got slightly too close to a car near a roundabout and had to brake quite suddenly. Although I remained calm I kind of knew I’d failed from that point and I was right. I also made the mistake of telling everyone I had the test beforehand, which I now know is never a good idea. It put unneeded added pressure on me to pass, and I had to let everyone know the result afterwards.
The second test was pretty much a nightmare from the start. The preferred parking position threw me, the waiting room was silent and horrible, then I ended up with a particularly unfriendly examiner who took a disliking to me from the start when I was a bit vague. Because I was so nervous and I have a bit of difficulty with processing what people have said sometimes anyway, when he asked me a question I wasn’t expecting I wasn’t sure what to say and said the wrong thing, which he didn’t take too well. I made quite a few silly little minors as I just felt sick throughout the drive, as uncomfortable as you could be on a driving test. On an unfamiliar road, I was going at the speed limit and I didn’t anticipate a sharp bend ahead until too late, so needless to say I failed again. I felt so deflated after my second failure, more so than my first, but I managed to get another test within a couple of weeks exactly.
This was it. I was determined this time would be different. Unless I had to do the reverse bay park, then I would have probably failed! My usual rescue pastilles were there, the same ones I’d used for my previous tests. There seemed to be a more relaxed atmosphere beforehand this time, people chatting and music playing from a radio. There was just a good vibe, the complete opposite of last time. I’m so relieved I ended up with the nicest examiner you could probably get. I had a bit of a nightmare at the beginning with the independent driving, basically not being independent at all as I kept indicating the wrong way and nearly going the wrong way. This never happened before; it was either a particularly dyspraxic moment, or nerves, or likely both. I was convinced I failed on that as she kept having to direct me. I met some idiot on the road who beeped at me for no reason, and she made a lighthearted joke about it which reassured me. Throughout the drive she really made an effort to calm me a bit as I told her I was nervous. She chatted to me about what I was doing, if this was my first test, and a few other things. Something inside me allowed me to blurt out about my other tests and I talked to her quite a lot. I honestly think this made a massive difference. You can’t choose the examiner you get, but it’s a huge help and I was able to drive better than I ever had done before because of it. When I pulled back into the test centre I seriously thought it could have gone either way. When she said not only had I passed but that I’d only made three minors I felt on top of the world; it’s indescribable. Over the moon is an understatement. I knew it, but I found it amazing to hear her say ‘you can drive unsupervised from now on, independently.’ She said she knew how much it meant to me, which I know was her being friendly, but she has no idea about my rollercoaster ride with driving!
Lots of messages poured in throughout the day and I can honestly say I hadn’t felt this happy and relieved for ages. I have my little red car that I’ve dreamed of having for years and it feels surreal. I love the independence of it so much, I now cannot imagine being without my car. I wish I could have known through that awful time that there would be light at the end of the tunnel, that it would all be ok, that I would be able to drive soon. That would have saved me a lot of suffering! I seriously never thought the day would come, what a rollercoaster of a journey it was!
Thank you for the optometrists at the hospital for their patience and not giving up on me.
‘Keratoconus is a condition that affects the cornea, the clear front surface of the eye. The cornea becomes thinner and more cone-shaped over time, instead of having a rounder curve. The change of shape causes blurred and distorted vision in the early stages, whilst in the late stages there can be an increase in blurred and distorted vision, poor night vision, halos and ghosting around lights.’ – (Fight for Sight’s definition.)
I was 15, on holiday in Belgium in the summer of 2013 when I first noticed something was wrong with my eyes. It was when I got lost in the Trench of Death and couldn’t find my family, despite them waving at me from the distance. I also have a vague recollection that my family noticed something was wrong when we went cycling on the Belgian countryside roads – dangerously, I couldn’t see cars on the roads until the last minute.
Reluctantly, I decided to go to my local opticians to have an eye test. I didn’t expect not to be able to read the first big letter of the first line on the eye chart with one eye – my vision was completely distorted. Further and seemingly endless tests at the hospital revealed that something was very wrong. Shocked, I received my diagnosis of Keratoconus.
Everything made sense then. I went through several pairs of glasses throughout my life and I always said they made no difference. My short sightedness and ‘lazy eye’ were constantly examined, but opticians failed to notice anything serious – presumably because the disease was in the very early stages and hadn’t developed properly to be able to tell. I had heard of keratoconus before, as my dad also has it but gets by with glasses. He isn’t technically blind in one eye like me; instead he has a milder version.
A long and agonising battle with RGP lenses awaited me, made more complicated by the fact I have severe dry and sore eyes (a symptom of keratoconus and due to the fact my eyes don’t properly close.) The uncertainty of whether or not I’d ever be able to drive worried me. Would I ever get my driving licence? Would my life opportunities and overall quality of life be affected negatively by this condition?
On Friday evening, I attended the Dyspraxia Foundation Youth’s drinks reception to mark Dyspraxia Awareness Week. It was a great chance to meet new youth members as well as to catch up with those I’d met at the previous conference in June, some of whom I talk to regularly on social media.
A few days prior, I received an email stating that I’d got the role within the charity that I’d applied for – a Youth Champion. Basically the role involves raising awareness through talks/speeches in organisations, social media, potential media coverage, contributing ideas and fundraising. I applied because I want to have a voice and I want to be heard; as someone who has always struggled to express myself verbally, I thought this would be a brilliant opportunity to find my voice and achieve this. I want more understanding, awareness and support amongst professionals in order to help young people and adults with the difficulties dyspraxia brings. Needless to say, I was delighted when I discovered I got the role along with two other members, Natalie and Tim, and we were to be formally inducted on the night!
Admittedly, I felt very anxious when I reached Norton Rose Fulbright (the venue of the youth drinks reception.) I felt a sense of trepidation and unease as I walked through the doors; I always worry about what others think of me when they meet me and how I am perceived because of my social anxiety and communication difficulties. Quickly, all of my doubts and anxieties disappeared as I met friends I previously recognised as well as some other very supportive and friendly members. It was also great to read the achievements in the booklet of youth members. It shows that we can achieve great things despite dyspraxia and that we are not stupid or inadequate, just very misunderstood and underestimated.
Going up to collect a trophy and a certificate, with the addition of a photograph being taken for the website, I felt pride. Pride that I would be representing a charity for the next year that has always meant so much to me and helped me in many ways.
Strangely I didn’t actually feel that nervous about going live on the Dyspraxia Foundation facebook page. Sure, I definitely was to an extent, but not as panicky as I would usually be as I felt comfortable with everyone. The beautiful London night skyline certainly added to the magic of the event as everyone appreciated it, having to take lots of photos!
Catching up with fellow facebook youth members was amazing, and I really appreciated their empathy and kindness. No one was left out – everyone ensured every individual was included in conversations, which says a lot of good things about the charity. I find everyone on the facebook group to be non judgmental, empathetic and supportive, with good advice and emotional support for every member. I have met so many inspirational people through it who I now consider to be friends, which means a lot. I hope it remains that way. The Dyspraxia Foundation has made me realise I’m not alone, I’m not weird, I’m not stupid. There’s a reason why I find some things more difficult and it takes me longer to do things – and it isn’t anything to do with intellectual ability.
I’m very much looking forward to getting stuck in with speeches, media coverage, fundraising etc and I hope that it will increase my confidence, self esteem and eliminate my social anxiety further. I’m excited to work with new people who actually understand my difficulties and don’t judge me, who just accept me for who I am. Watch this space!
I was so excited when I came home from school one day and it was announced we were getting a dog. I was eight years old and had always wanted a four-legged friend – although I could never have imagined that you would mean so much to me. It was love at first sight and I never thought that one day you wouldn’t be here anymore. Deep down I knew that one day you would have to leave me, but I always imagined you with me throughout my life.
Remember your first trip to the beach, in Barmouth 2007? You were such a naughty puppy, refusing to come back on the lead. Since then we have shared lots of holidays and fun times swimming in the sea together as well as some lovely, long countryside walks. Whatever I did, wherever I went, you were nearly always by my side.
You were by no means a perfect puppy to most people, or a perfect dog; you were over-excited (even in your old age), always jumping up at people and being over bearing, often being mistaken for a puppy when you were an eleven year old senior. Raiding picnics and stealing food, rolling in disgusting things, wallowing in muddy puddles and pulling down curtains also featured in your life a lot. But you were perfect to me; you were always much more than a pet. You were my best friend, my sister, a true family member.
As I was growing up and getting older, so were you. I could walk further whereas you could walk less. I became stronger and you became weaker and frailer. Arthritis eventually meant a short plod round the top of the park. I’m sorry for sometimes getting impatient and annoyed when you were slow and doing a significant amount of sniffing. I’m sorry for sometimes moaning when I had to take you out in the rain or early morning. I’m sorry for wishing I didn’t have to share my crisps with you, always trying to hide them from you to make you go away. I’d give anything now to have those moments back.
Out of all the teachers I’ve had over the years, you have always been the best. You reminded me about what was truly important as you convinced me to enjoy a sunny walk outside and just to live in the moment rather than fret about the future. You have taught me the meaning of faith and trust, patience and hope. It was your waggy tail and smiley face every time I came through the door or when you greeted someone that taught me the importance of enjoying every day and treating everyone with kindness. I have had many ups and downs in life, and through them all you were a constant source of comfort. A paw on my knee and a lick on my face, you were always there for me through it all. Even at my lowest, you never judged me and instead showed me companionship when I needed it most. I enjoyed the times where I slept by you, mattresses side by side – your snoring provided me with a strange sense of security and calmness. You also provided me with much amusement and laughs, whether it was because of your funny yawn or something else.
That horrible, dreadful day came round all too soon. It was the worst thing imaginable to see you in so much distress and discomfort all of a sudden. By the evening of that Saturday you were gone and I clearly remember our last moments, while the vet was preparing the injection. I hugged and kissed you, telling you how much I loved you and how much I’d miss you, despite the fact you were sedated so you didn’t recognise me anymore. I hope that you were still comforted by your family beside you in your last moments on earth, and you knew how much we loved you. I was unable to control my emotion as tears rolled down my face hysterically. We removed your collar and I watched in agony and disbelief as the vet administrated the final injection to take my best friend away, while my mum was hugging you close. Within seconds you had passed peacefully, and we left your lifeless body lying there. When you left us, I felt a part of me did too. I still sometimes find it hard to believe and come to terms with that you aren’t here anymore, and you’re not coming back either.
I like to think of you in Heaven, across the rainbow bridge, running in the grass chasing squirrels freely across the sky with your waggy tail, despite not believing in the after-life. I hope that one day we will meet again, in the sky, where we will suddenly see each other, reunited forever. Until then, I will try and remain strong and remember that you are always close to me in my heart. Months have passed and yet I’m still grieving. I still sometimes expect to see you at the window. I forget you’re not here and still come down at night when I can’t sleep to be comforted by you, only to see an empty space where your bed was. I still find tennis balls in the garden, which used to be part of your ever-growing collection. Whenever I see a huge stick I think of you prancing proudly with it, darting past with half a tree in your mouth.
Watching you bond with Frank was a dream come true for me, and your legacy lives on. You have taught him how to come and greet people at the door, lick the plates clean and comfort me when I need it, although no one could ever replace you.
I’m forever grateful to have had such a special friend in my life, a bond that I can definitely never have again. Thank you for everything, for showing me so much love and friendship and for being such a lovely companion. My love for you was so deep and strong, I hope you realised how much you were adored by everyone who knew you.
A lot of people won’t understand that I’m not just grieving for a dog, I’m grieving for a family member. Grief is a complicated thing and it doesn’t go away, even for a cherished ‘pet.’ I feel sorry for anyone who hasn’t had the privilege to have a special bond with an animal – you have enriched my life in more ways than I ever imagined possible.
Love you forever my sweet Lot Lot
From your best friend xxxxxx
‘Until one has loved an animal, a part of one’s soul remains unawakened’ -Anatole France
Imogen’s blog 