The wipers groan across the windscreen. We are stuck in heavy rain at the train tracks. One train goes by and then another. It’s Saturday morning in Melbourne’s eastern suburbs and we are all late for basketball, or soccer, or footy, or ballet. Frustration pierces the sanctity of our car.
“Mum,” says the muffled voice from the back, coming from beneath her burgundy puffer jacket cocoon. “This song is about an affair.” On the radio is the 1979 hit Escape by Rupert Holmes.
If you like piña coladas, getting caught in the rain
If you’re not into yoga, if you have half a brain.
My daughter Sunny has lost her soccer game and is now a human sleeping bag with stringy, mud-streaked shins and iridescent pink footy boots.
How does she know this? “I just know,” she says. Did she learn about it at school? “No.”
I’ve never paid attention to the lyrics of this song that pops up in romantic comedies starring Ben Stiller or Adam Sandler. I have no idea what it is about. I question her further, not asking the question I truly want answered: how the hell does she know about affairs?
“It’s not technically about an affair,” Sunny says, emerging from her warm nest and leaning forward. “This guy is bored with his wife and sees an ad in the paper from a lady who wants to have an affair. He writes to her and they arrange to meet, but when he gets there it’s his wife.”
Sunny’s analysis is spot on. This anecdote might not seem remarkable, but Sunny is 11. She is also dyslexic.
When tested, Sunny’s comprehension is equivalent to that of a 17-year-old. After almost 400 hours of private, one-on-one intervention, her reading ability matches her grade-five peers. On a good day her spelling is grade three standard.
Dyslexia is a lifelong, inherited condition that affects the skills involved in accurate and fluent reading and spelling. It can also result in significant difficulties in written expression. For people with dyslexia, there is often a great discrepancy between what they can comprehend and what they can communicate. It exists on a continuum from mild to severe but is not an intellectual disability. In fact, many people with dyslexia have high IQs or are gifted. It is estimated to affect 10% to 15% of the population. In Australia, it is often referred to as the invisible disability because, although it is recognised under the Commonwealth Disability Discrimination Act 1992, New South Wales is the only state that legally recognises it as a learning disability.
The most recognisable characteristic of dyslexia is poor phonological awareness, which is a difficulty identifying and manipulating the sounds in words, a foundation skill for early reading and spelling development. It is also associated with slower processing of verbal information such as letters and numbers.
Put simply, learning to read for a child with dyslexia is the equivalent of asking one without the condition to read an entire book of complex chemical names or medical terms.
‘Am I dying?’
“Am I dying?” Sunny asks the day we tell her she has dyslexia. She is seven and in grade two. She looks at me with her puzzled face. Her brow furrows into a horseshoe shape. Her sparse eyebrows curl up like two biscuit-coloured question marks. I want to cry, but I laugh.
“No you’re not dying. You just learn differently. Some kids find spelling easy, some find maths hard. You need more time to learn to read and write, but you have skills that other people don’t have.”
“It’s hard to explain, but you know the astronauts that work at the space station, half of them are dyslexic.”
“So I can go to the moon if I want?”
The biggest misconception about dyslexia, and there are many, is that it is a learning disability that exclusively affects the way people process printed information. In fact, it affects the processing of information universally because of differences in the way the dyslexic brain is wired.
The same connections and circuits that are established in the development of a dyslexic child’s brain, which make reading and spelling so challenging, are also the ones that create undeniable cognitive strengths; not compensatory strengths but strengths that enable people with dyslexia to excel. Think Albert Einstein, Walt Disney, Richard Branson, Jamie Oliver, Steven Spielberg. Problem solving, big-picture thinking, innovation, creativity. These are the cognitive skills they are wired for.
But both the strengths and the weaknesses are a mismatch with how education is delivered in the traditional school setting.
‘They’ll try to tell you she has ADHD. She doesn’t’
Looking back, the signs were there. When Sunny was in prep she brought home readers that she had selected in class. We would sit in my bed propped up by pillows and Sunny would make up stories based on the pictures accompanying the words she could not read. “That’s a great story, but it’s not what it says on the pages,” I would say. “Well,” she’d reply, “it would be good if it did.”
In grade one she had stomach aches every night. Meditation, hot water bottles, Panadol, stroking her brow, nothing helped. I’d take her to a child psychologist. We were moving to London; the psychologist said we shouldn’t go. It would be too disruptive. She didn’t suspect a learning disability. Nor did Sunny’s teacher. It’s odd, in hindsight, because her uncle had dyslexia.
We moved to London and the stomach aches ceased almost overnight. In the UK, they teach phonological awareness. It is a method of teaching reading that links letters to speech sounds and then blends these sounds together into words. At the parent-teacher conference we were told Sunny was bright but appeared to have had no formal education.
We were back in Australia for the start of grade two when Sunny was diagnosed by Jodi from the Australian Dyslexia Association. The testing took an hour and cost $ 1,200. I got five minutes with Jodi after the test and she spoke quickly, like someone who’s accustomed to explaining her life’s work in hushed tones at the end of corridors in arbitrary office buildings. “They’ll try to tell you she has ADHD. She doesn’t. She’s just dyslexic.”
Days later I received a report in the mail that I didn’t understand, but we started remediation. Sunny has a private tutor three times a week. It costs $ 95 an hour. When I think about the kids for whom $ 95 an hour is beyond comprehension, bile rises in my throat. Dyslexia doesn’t discriminate.
Sunny’s tutor, Cheryl, is an education specialist who uses a multidisciplinary approach to assisting children with dyslexia. She teaches Sunny English the way others learn a second language: explicitly. The teaching speaks to Sunny, or rather to those unique pathways in her brain. For the first time in a long time she is happy to go to school.
Sunny’s teacher introduces me to Katherine, a social worker whose son has dyslexia. She challenged the Victorian Curriculum and Assessment Authority to secure extra time for him in his VCE exams.
Katherine can’t meet me in person as she is furiously trying to complete her PhD on parental experiences of dyslexia in a social policy climate that doesn’t recognise dyslexia. The working title says it all. For Katherine, it has become a social justice issue. She is now preparing to fight so that all children with dyslexia have equal rights to special consideration, and not just the lucky few with lawyers.
I take Sunny to a paediatrician who specialises in developmental and learning issues. It feels like a responsible move. He concurs that Sunny does not have ADHD. Learning to read and write is hard. Of course her concentration is impeded.
“If you were sitting in a physics lecture you’d be fidgeting at about the five-minute mark,” the doctor says. I think about the pamphlets we get from school when a child turns up with tapeworm or lice or someone in the class has a peanut allergy. I want a pamphlet. There are no pamphlets. Who is in charge?
Sunny is lucky. Her Melbourne private school is dynamic and her teachers are responsive. They want to understand more about how to help her. None of them have been trained to teach children with dyslexia. The education courses in Australia don’t offer this as a significant part of their curriculum. There are no postgraduate specialist courses. Sunny’s teachers put her in small groups, take her out of class for one-on-one catch-ups and modify her work to make it achievable. They teach her to mind-map so she can get her undulating, fantastical thoughts down on paper. Our principal tells us they won’t call on Sunny to read aloud in class. All staff will be informed. Later she can use assistive technology. She will talk into a voice-activated computer or use a scribe.
“Yes, but how will you teach her?” I ask.
Sunny isn’t ashamed, if anything she’s relieved. She tells her friends, she laughs at her spelling mistakes, she never doubts her intelligence. It is not the case for many others. I speak to another mother who is uprooting her family to send her son to a specialist school in Canada. She feels she has no choice. For him the chasm between what he can comprehend and what he can communicate is so great he is suicidal. He is eight.
I don’t blame her. In Canada and the UK, teachers are taught to spot the warning signs and early screening is routine. There are dyslexia-friendly schools and specialist teaching courses designed to provide teacher training in evidence-based strategies.
Sunny scores above the national average for reading and writing in her grade five Naplan test. The next day I am at the supermarket and she sends me a text message: “Haw long will you be?” Haw. It’s inexplicable why some words just throw her. Dyslexia cannot be cured. Sunny will always be affected in some way.
“Mum, I’m in all the dumb groups.” Sunny throws this into the middle of a negotiation about drive-through McDonald’s, as though both topics share equal weight.
I think of the arcade game called Frogger that my parents rented when I was a child. The aim was to steer a frog across a three-lane highway without it being flattened by cars and semi-trailers. The more successful the frog, the faster the vehicles. At night, I am Frogger. The cars and trucks are the outcomes I read about online: more likely to drop out of school; serious risk of mental health issues; juvenile delinquency. It all starts with a child thinking he or she is dumb.
We are given homework and told to play maths and language games. Her teachers recommend apps and websites. Do this, try that. It goes on. But Sunny’s tired after school and non-compliant. I’m tired too; tired of worrying and researching and advocating for her. It’s only early days. We haven’t hit puberty and parties and social media. I can’t spend any more time fixing what is “wrong”. I decide to focus on what’s right. We make a list of 1980s comedies and watch them. We start an Instagram page called “random dance moves in random places to random songs”, we skip school and go horse riding.
We plan to write a young adult novel together. I record the plot as Sunny dictates it. I rein her in when she ventures off on a tangent. The story has legs and we get serious. Then I tell Sunny I am thinking of writing a story, this story, about dyslexia in the Australian context. Does she mind if we put our work on hold? She begs me to write it. Our novel can wait, this can’t. She’s inherently an activist. Every day she asks me, “Did you work on it today?” She begs me to read it to her and listens enraptured. She loves being the star of the tale but she believes in the cause. Keep going, Mum. Write every day. It’s so important.
It scares me and then I hear her and I’m not afraid
Someone beeps their horn a few cars back as though the noise will make the trains move faster.
“How did you know it was his wife?” I ask, struggling to hide my astonishment. In true Melbourne style the clouds suddenly part, the rain ceases and the morning sun sends down its blinding shards of light. “It said so in the song: It was my own lovely lady, and she said, ‘Oh it’s you.’ We laughed for a moment and I said, ‘I never knew’ – that you like piña coladas and getting caught in the rain.”
The windscreen wipers stop their dance, leaving a residue of smeared lines, rain mixed with dust.
Sunny doesn’t just read between the lines, she exists between the lines. It scares me and then I hear her and I’m not afraid. “Do you ever feel like you want to escape?” she asks quietly, tentatively even, as she ventures back into her cocoon.