How Dyslexia Affects My Daughter

My youngest daughter was diagnosed with severe dyslexia at the end of Year 1. 

Getting the diagnosis wasn’t a big shock, we had suspected she had an issue from the time she was at Kindy; Pre-Primary was a mess of a year, and by the start of Year 1 we had begun the long testing process. We also watched her daily struggle, so putting a name to it came as a relief in some ways.

Having a diagnosis has undeniably helped. It allows her to label some of her challenges, to put them in a box and say to herself – and others – ‘that’s my dyslexia, that’s not me’.

From the very start she has owned her dyslexia. We haven’t tried to hide it, and I have encouraged her to talk about it with her classmates and friends. She stands up and talks about it as a news topic, her teacher referenced it on her Merit Certificate - and I strongly believe this has helped stem any possible teasing and bullying.

My daughter is now only weeks away from the end of Year 2. Yet her ability to read, write, spell and understand certain maths concepts is probably that of a Pre-Primary student. She’s a smart kid though. Dyslexia is not related to intelligence, and most dyslexic kids test to be above average intelligence. 

All dyslexics experience different strengths and challenges, and like many things, it operates on a continuum. This is how dyslexia affects my daughter:

Poor sense of word recall – she often struggles to find the word she wants to use to describe or explain something. As a result she will use an incorrect word or simply make one up, which can be kind of cute.

Difficulty hearing sounds – she has difficultly hearing or distinguishing between certain sounds. This has a knock on effect for both speech and spelling.

Poor concept of time – she has difficulty understanding the abstract notion of time and cannot grasp the difference between waiting for an hour and waiting for a year. The language of time, is therefore lost on her and she will talk about things happening yesterday when in fact she means tomorrow.

Poor speech – as she unable to hear certain sounds, she cannot replicate them, leading to difficulties with her speech.

Poor spelling – if you cannot hear or say sounds, then it makes sense that you won’t be able to use them when you are writing. When writing she often leaves out vowels and misses adjacent consonants.

Poor letter recognition and formation – she struggles to distinguish between similar looking letters such as b and d, n and h or similar sounding letter such as g and j. She has difficulty visualising diagonals and so letters such as K, M, W and V are either written incorrectly or she prefers to read and write them when they are in a curly text.

Confusion with left and right – if left unguided, she will often start reading a word from the right-hand side, for example she will read ‘got’ as ‘tog’.

Poor short-term working memory – if she correctly sounds out a new word on one page, she won’t necessarily remember it when she reads it on the next page. It will look like a new word and she will need to sound it out again. She may read the same word, three different ways over the course of a few minutes, for example ‘got’ as tog, get and got.

Slow processing - related to the working memory is the fact she processes information more slowly. It takes her longer to work through instructions, so if you give her a four step process, by the time you have finished telling her the last step, she's only just processed the second, and probably forgotten the first. She can do everything you ask, but not if you dump all the information on her at once. This is usually when people accuse her of 'not listening', but she is listening... she's probably listening very carefully - but she's just trying to recall the information that is rapidly slipping away.

Poor number recognition – while she is able to visually understand numbers and put them in the correct order, she cannot name them. Often she cannot tell you what a number is (for example ‘twelve’) without counting from 1 (ie 1-2-3-4-5-6-7-8-9-10-11-twelve).

There are compensations though.

From early on, before we realised she was struggling to comprehend the world around her, she had already begun to discover methods of coping. She would use her body in a way to describe words she couldn’t find the language for, and as a result, she has always been physical and animated. When she couldn’t find the word for banana, she would curve her hands into the shape of the fruit, or pretend to peel and eat it. Automatically we would provide the word ‘banana’ which she would repeat, and all the while we had no clue that she was having difficulty recalling the word begin with.

She is able to spot differences and see patterns that ordinary brains cannot. She has walked into a room where one small thing has changed and notice it immediately. She completed a nine square sudoku style puzzle in seconds, where instead of numbers, images of different types of weather had been used.

She always kicks my butt at Memory, and I've never once needed to 'let' her win. I wish she'd let me win once in a while.

She has uncanny long term memory, often dredging up a comment I made once, five years ago, or tearing up at the memory of a random event that happened when she was three. She will remember the faces of people she met once, or the precise location of her great-grandmothers grave, but she has no idea what her uncles' names are.

She has an incredible eye for detail - once with her speech therapist, we were playing a game where we each had a different game board. Each board had 100 images. A card with six images was dealt – but only one of those six images was present on each of the boards, so you had to look at a board with 100 items, while searching for six different images, only one of which was actually there (a bit like Where’s Wally). It meant you could spend most of your time looking for an image that wasn’t even there. Almost every time she would win, and then find the correct image on the other boards as well just to prove a point.

I believe she also has a level of insight towards others that comes directly from her own personal anxiety and sadness. She recognises these feelings in others, because she has experienced it herself, and as a result she can be very empathetic.

She is also very visual and creative, she loves drawing with fine levels of detail as a result of her intense observation.

She also has plenty of big ideas and makes connections between topics and concepts that would normally be beyond a seven year old. Truth be told, sometimes her statements are wildly left field and beyond the mortal brain of her mother (me), but I love her enthusiasm regardless.

I have been telling her stories about the many inspiring and successful people who have dyslexia and have achieved incredible things in their lives. She loves finding out that an actor she loves on TV or an author who wrote a book she enjoys also has dyslexia. She knows that although she will be challenged by her learning disorder, she won’t be limited by it – and tells me constantly that she can’t wait to see what amazing things she will do in her life.

I freely admit that before my own daughter was diagnosed, I hardly knew a thing about dyslexia. But chances are there will be one, two or even three children in every classroom in the country with it, diagnosed or not, so I think it’s important for all parents and teachers to know what it is.

Without a diagnosis, you might just think they are slow to learn, perhaps they are seen as the ‘naughty kids’ because they don’t concentrate in class or they’re disruptive. My daughter certainly was. You might see them as masters of procrastination, as they will do almost anything to avoid certain situations.

As she gets older, some aspects of her dyslexia will get better as she learns how to manage it, and others will get harder. I have no doubt that this is a lifetime journey that she’s on, and for the next decade at least, I will be right there alongside her.

To be continued...

1 Easy Step to Mucking up the School Holidays

Even though it is currently summer school holidays here, my youngest daughter has been doing homework almost daily for the past month. It’s safe to say, it hasn’t been the ‘funnest’ holiday ever for her, but with her diagnosis of severe functional dyslexia being confirmed days after school ending last year, everyone (above the age of 40) agreed that she couldn’t afford to miss 7 weeks of schooling.

So I get to play teacher. Yay.

Some days start with tears and end with shouting. Sometimes we mix it up, and start with shouting and end with tears. ‘Why did I have to get the broken brain?’ she’d mumble after crawling into my lap for a hug. Every session ends with a collective sigh of relief – and I can’t tell whose are louder – hers or mine. But every day she amazes me with her persistence and tenacity.

Today I gave her an activity that she enjoys because she gets to use a packet of brightly coloured alphabet stamps. Hell, even I like brightly coloured alphabet stamps.

I gave her a page that had the following:

B E _

_ R I P

_ A M P

W _ G

_ E N T

She uses her stamps to make ‘real’ words (such as bed and red, drip and trip). It can be rather hit and miss, but it’s good for her to swap sounds and see how they affect words.

But little did I realise that the letter stamps were alive, all with unique personalities.

‘I want to go first’, she squeaked waving the letter M around. She hopped the letter over to the first word. ‘B-E-M’ she sounded out. ‘BEM.’ She sighed heavily. ‘Too bad M, back in the box.’

‘I’m scared,’ she whispered, waving the T around. She glanced sideways at me. ‘T is just a baby.’ She said by way of explanation. ‘Go T’ she cried in encouragement. ‘You got this!’

Having established that indeed BET was a real word, she turned to me – ‘I’m on fire!’ she said.

We made our way through the words. Very. Slowly. She’s very fair-minded and wanted to give all the letters a chance.

‘I want a turn’ the orange letter C cried.

‘Can I bring a friend?’ asked green S.

‘I’m X and I like being crazy!’ whooped the purple X.

‘Ladies first!’ huffed the pink J.

Soon, all the pink letters were lined up with a respective blue ‘boyfriend’ and were about to start a conga line. I was tempted to tell them all off, but the thing is – she was actually enjoying herself and she was making the words she needed.

‘Off you go D,’ she said encouragingly to a pink stamp as she bounced it towards _ AMP.

‘I have a good feeling about this,’ she whispered to me.

‘DAMP! Yes!’ she cried.

The next word was W_G and after a few false starts involving unpopular letters Z and Y, I told her she would need vowels to make it into a word.

‘Right then,’ she cried to the box of stamps. ‘I want all the vowels please. Line up! Come on O where are you? Don’t be shy,’ she pleaded.

Having made wig and wag, she moved onto the last word which was _ENT. She lined all the vowels up again to have another go.

‘You won’t need the vowels for this one,’ I explained. ‘It already has one.’

She cupped her hands around the stamps. ‘Shhhh Mum, you’re making them sad.’

Slowly she marched them all back to the box, whispering gently to them not to feel bad, and they’d get another chance.

And even though dyslexia will be a hard slog for both of us, I cannot but feel hearted by the fact that she has a love for letters and words. And maybe one day, with lots of work – the feeling will be mutual.

The Shocking Day I Realised How the World Appears to My Daughter

My youngest daughter is severely dyslexic. We noticed a difference between her and her peers a couple of years ago, and the older she gets, the more marked it is. Diagnosing her dyslexia was a costly and time-consuming process, and despite intensive intervention at school and at home, progress is painfully slow. 

Having a child with reading and writing difficulties is extra strange considering I spend my life reading and writing. It’s my chosen career, and for the most part find it blissfully easy. So it’s been hard for me to take a step back and comprehend how the world might be for her.

Until I was sitting on the toilet recently. 

I know that sounds strange, but we have an Auslan finger spelling poster in the toilet that I often find myself staring at.

I pride myself on being able to rattle through the hand signs for the alphabet pretty quickly, just like my daughter now is (almost) able to recite the alphabet. We are both pretty good when asked to go from start to finish.

But if you ask either of us to read (or sign) one of the ‘trickier’ letters – for her it might be H and F, for me it would be signing H or G, we will pause, no longer certain, without the context of the surrounding letters.

If someone proficient in Auslan sign language came up to me and started spelling ‘Hello, my name is Sam’ I would probably panic. I’d have to ask them to go very slowly, one letter at a time, translating the hand shapes to sounds, and trying to hold them in my head while I concentrate on ‘reading’ the next sign.

In an ideal world,  when reading H-E-L-L-O, you're still meant to remember the ‘H’ by the time you get to ‘O’. 

But if I was watching someone sign the letters to me, I would probably be concentrating so much on recognising the ‘O’, that the ‘H’ would be long gone. The word I had just 'spelled' would be an incomplete collection of sounds and make no sense. I then imagined how hard it would be to keep an entire sentence in my head.

My heart sank.

That’s when I realised that's what it must be like for my daughter every time we ask her to read. 

And while I don’t have to learn the Auslan finger signs, she HAS to learn how to read and write English. There is no avoiding it. For her, it is a mountain that must be scaled. Every day for the rest of her life.

For her, reading is excruciating and labour intense, and without any certainly that sounding the individual letters will actually makes any sense once she’s done.

Despite the difficulties she has, she is determined to persist. She blows the rest of us out of the water when it comes to working hard. We are developing little rules that help her remember each letter shape and sound. What is automatic and easy for most of us, involves a number of laboured steps for her.

Funnily enough, one thing she can write with no issue is the phrase ‘I love you’. She writes it a lot. On cards and pictures, on scraps of paper, on the shopping lists, on post-it notes that she leaves next to my bed. 

Yet the other week, when she had to read ‘YES’ it took about 10 steps.

First I wrote the phrase ‘I love you’ next to her word list. Then I circled the ‘Y’ in Yes and the ‘Y’ in You and joined them together, and then I waited. I watched her eyes dart from one phrase to the next, as she mouthed the sounds to herself. ‘I love you’ she whispered under her breath, ‘You’ and then she got to ‘Y’. Then she looked back at the word YES and started ‘Y-E-S’. She turned to be with a big grin ‘YES’ she shouted.

To which there was only one appropriate response: ‘I love YOU’ I replied.