Being a dyslexic adult…….
I wish I had a wand… I would use my wand to turn non-dyslexics into dyslexics just for a day. I want the non dyslexics to know how exhausted I am trying to keep up with ‘life’ I don’t even necessarily want them to know what dyslexia is. what I want them to know, understand and feel is the impact that dyslexia has on my life good and bad. I want them to understand me. I don’t want them to look at me differently, I want them to help me by understanding what I’m going through so that they can provide the support I need… Often this is simply a listening ear or a smile of reassurance. simple but would be enough to see me through, to make me loose my self doubt and to spur me on when I feel I am hopeless at managing life.
Lots of my posts have been about teaching, being a specialist teacher of dyslexia or being the parent of a dyslexic, but this one is about me… This ones tells the story of what it’s like to be a dyslexic adult… Except it’s not a story, it’s my reality… It’s reality for lots of people, more people than you realise. I don’t want you to feel sorry for me, for us, I don’t want your pity, I just want you to understand, because when we understand we have knowledge and knowledge is power and knowledge can make a positive difference if we let it.
I am 36, nearly 37, I am a mummy to 3 children, a wife to an amazing husband and an intervention teacher for 3.5 days a week. For the other 1.5 days I do supply teaching or tutoring or independent work with schools supporting and improving provisions for dyslexic pupils, raising awareness and understanding. Weekend Life is crazy, it’s crazy for everyone, but sometimes I need it to stop because my head just cannot keep up. I’m a personal secretary for 3 children, myself and my husband, appointments, party invites, dance classes, social events, rugby practise, music practise, homework, school trips …. The list goes on! With working memory on 5th percentile I’m bound to forget something. I remind myself daily I’m only human but this little nagging voice in the back of my head whispers ‘ if only you’d written it down, or thought a bit harder you wouldn’t have forgotten it.’ The little whisper is strong enough to trigger the domino rally of engrained negative thoughts that have collected over the years owing to undiagnosed dyslexia… The more I try to keep the dominoes up the louder the whisper becomes and the harder it pushes until eventually the tidal wave of hopelessness smothers the remaining dominoes drowning any hopes of remaining positive…
Everyone forgets stuff I know, but I genuinely feel on a daily and probably hourly basis that I’m out of my depth, swimming against the tide hoping upon hope that no one will catch me out. It’s the simple things which are hard… Remembering the days for school trips, kids needing packed lunch, remembering mufty, remembering I’m supposed to pay for school dinners… I am aware how ridiculous this sounds to a non dyslexic but let me explain what happens in a dyslexics head… We register things and we have things ingrained in our heads but we can’t connect the information. I can give you a lovely example. My friend who lives on my road… takes my children to school. On Friday she popped in for a cuppa after school. We had a lovely time chatting about the weekend and how lovely it was that our girls had been invited to a party on Saturday, the following day. It had been arranged that my daughter would walk to my friends house at 1 on Saturday and I would collect her from there later on. (Should also point out, neither of us had actually replied to the invite until the day before because we had forgotten about it owing to the sheer amount of paper work that appears to come home from school every night!) we then continued to chat a little more, drink more tea, yes tea no alcohol! As she left I said, ‘well have a great weekend and I’ll see your Monday.’ ‘Yep you too see you Monday,’ she said, it wasn’t until she reached the end of the path that we both laughed and said… Actually I’ll see you tomorrow for the party… See my brain just can’t connect and can’t register events even if we have just discussed them!
I have been updating my dyslexia knowledge, completing courses and cpd as I wish to reapply for my assessment practising certificate… This should be easy… It has taken me nearly 2 weeks, 4 phone calls to dyslexia action, various discussion with my husband to talk it through and a failed attempt at an application form, a disaster with IT (my error) and three sleepless nights because my head was whirring , before I could finally tick it off the list… I am not sure if it is good or bad but dyslexia action know my name now! Well the people in the assessment practising certificate office do… Lets hope they don’t think I am completely incompetent because of the tirade of simple questions I was asking which time and time again I was told were available on the website… I had read the website but I needed to talk things through! Luckily the DA are incredibly understanding and I hope to have my practising certificate very soon.
See these simple things require organisation and require thinking and it’s the thinking which is exhausting. I actually have to focus really really hard on being organised. Many of my close friends know this, (because I let them see the real me) many people who know me professionally may well be shocked by this as I appear so together and on top of it! I am a fantastic actress and behind the radiant smile and sparkly organised folders is a hell of a lot of thinking and hours and hours of hard work.
I can’t do more than a few days at a time, I know this drives people mad, I know it makes me look disorganised, it is in fact the opposite. It is my way of controlling the million things which career out of my control everyday… To look ahead when I am managing all of the above is impossible. I can roughly block events in but on Tuesday please don’t ask me what time I am arriving on Saturday because I simply won’t have thought that far ahead. I function on a day by day, and occasionally hour by hour mindfulness type basis. I learnt the hard way that if I wanted any chance of living a ‘normal life’ I would need to only focus on a few things because my working memory cannot cope. Living in this day by day way I am far more successful and able to keep on top of life without it crushing me!
You may wonder why I am not using my wand to not be dyslexic for a day… I would never wish this… Being dyslexic is part of me and I wouldn’t wanna be anyone else? Living and being dyslexic makes me work hard it makes me a perfectionist. It has made me develop empathy because I don’t want people to feel as I do. Being dyslexic has engraved a resilience within my soul that cannot be broken. It makes me creative and artistic and forward thinking, gifted at talking and presenting. It makes me passionate about what I think is right, it makes me unique… It has enabled all these wonderful things but I loose sight of them so often because life overwhelms me, living in a world where no one understand how my head works isolates me, makes me look like I have ocd or like I am unorganised, it makes me an underdog it makes everything a battle… Here are some reasons why.
I have amazing ideas, like now at 2 in the morning my head is swimming with ideas but I can’t switch it of, it doesn’t have an off switch. I have recently got into the hunger games… I love watching films and I am actually enjoying reading the books but my head is in a constant whir trying to make sense of it all! I am such a deep thinker that I need to be able to make sense of it but it takes me so long to work it out. I need to read it several times, watch the films and reread the books in order to comprehend the messages and meaning of what is going on. It’s exhausting and frankly I don’t really have time. Reading should be pleasurable and it is but I can’t just read, I can’t just scratch the surface, I have to go underneath…
This leads me on nicely to my job… I am really really good at my job, anyone who employs me is really lucky because I am a grafter, and I will always do my best because I live in fear of not being good enough or not having worked hard enough. Fear I should say of not letting others down but letting myself down. Any children who cross my path are extremely lucky because I pull out all the stops… They will achieve, they will make progress and at the very least they will feel good about themselves in my lessons… This comes at a cost, not for them but for me… I will do what ever it takes to make this happen… I set my expectations too high, the only person who can and will actually fail is me! When a child does not reach a level I set (which is probably unrealistic!) I beat myself up, I hear the whisper of self doubt…. Clicking through the dominoes… If only you had presented the work in that way, or tried that approach, or given that activity… It might have made the difference…’ Even the things I am good at I turn into weapons…
This is what dyslexics do, they turn the magical things they thrive at, their special gifts into weapons, into apologies and into feelings of never quite being top of their game… This is the battle we face everyday… This is the battle I face everyday. The battle of weighing up what is realistically possible to achieve, what I want to achieve and what I actually manage to achieve… Hopefully keeping some of the dominoes up and hopefully keeping my head above water in a professional and calm way… So please forgive me if on occasion I am short with you, or if on occasions I don’t mange to hold my emotions in… Or if on occasion I forget to reply to a party invite, or if I appear non committed because I can’t commit to an event thats a few days away! I am expelling all my energy and working memory on keeping on top of life, on managing my constantly whirring and connecting brain and on surviving the day to day stuff. I’m not meaning for it to sound dramatic but it’s true, living with dyslexia is amazing and brilliant but it is also exhausting and needs to be kept in check and within the real world.
It’s crazy, because I know I’m dyslexic, I can read, I can spell (sort of with help from spell check!) but dyslexia impacts and oozes into every hour of everyday, there is no escaping it, apart from maybe the hour before bed where I totally zone out in front of the TV and disappear within my self while my head pings all the thoughts from the day around my brain attempting to file in some kind of useful order… I know I am an intelligent, brilliant and amazing person deep down, but sometimes its hard to truly believe it and sometimes the dyslexia is so overpowering it’s all you can think, feel and see…
I just wish non-dyslexic people understood the effort and that I put into hiding and covering up my difficulties … That’s what I would use my wand for and that is what I would wish for. I’d wish that the non dyslexic people would see how hard we have to work to keep afloat, keep organised and keep ‘on top of life’ that’s the exhausting bit and that’s the bit that no one ever really notices because we hide it, and we hide it well!
Today I don’t want to hide it, today I want you to know… I’m dyslexic and I am clever, but only because I work super hard and I never give up. I may appear strong, and I am strong but inside I am fighting a battle you can only imagine. I probably will win the internal struggle and I will be the only one with casualties as more dominoes fall but my resciliience is second nature for me…
Tomorrow is another day and tomorrow might be better, but I can guarentee tomorrow will have battles and tomorrow more dominoes will fall but my determination will get me through and my determination will eventually shout louder than the whisper. I will hide my exhaustion and battle wounds behind my smile and tell everyone everything is fine. Tomorrow my dyslexia will still be there but my wall will be stronger and , will be reenforced and I will be on top of dyslexia again… It won’t beat me, it never has but every now and again we have to let it out and a every now again we have to stop pretending it doesnt impact and it doesn’t hurt, because it does and that’s what I want non-dyslexics to understand.
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