One afternoon in April, I had to run some errands, so dragged my 13-year-old son, Rory, along to pry him away from screens for an hour.

He got into the car with a book. I said nothing.

He then proceeded to read this book for the duration of the journey, stopping occasionally to check how many pages he read and how many he had to go. By the time we returned home, he’d read about half of it, then finished the novel on the couch. Then I said something.

“Do you realise you did that?”

This time last year, Rory could barely struggle through a paragraph. This is  the result of 289 (and counting) hours of highly specialised 1:1 dyslexia interventions that cost £170 an hour and has chewed through my Old Age Money.

“Yeah,” he agreed, chuffed, then blanked me to play Sonic the Hedgehog.

After 200 hours of highly specialised 1:1 dyslexia interventions, Rory can now read entire middle grade chapter books (Photo: supplied)

I first realised Rory was dyslexic when he was six. He was trying to type a cheat code onto the PlayStation and inverted his Vs and Ns.

At this point he had already been diagnosed autistic. It took months for him to be assessed, but eventually, aged eight, he received a diagnosis and it was added to his EHCP – just in time for lockdown.

Rory has been seen by educational psychologists, occupational therapists, speech and language specialists, and hospital neurological teams since nursery. His results all show he’s above average in intelligence, his vocabulary is that of a 17-year-old, and the dyslexia-ADHD combination means he soaks up information and concepts well above his peers. But his dyslexia means he struggles with reading and writing. As a result, he fell behind dramatically at school – by the time he was 11, he had never read a book; they didn’t even bother assessing him for SATs in year six. He is convinced he is stupid.

The British Dyslexia Association (BDA) reports that one in 10 people in the UK are dyslexic. It is not intelligence-related, and people of all intellectual abilities can be affected by it.

Dyslexia is classed as a disability, and legally schools are required to make “reasonable adjustments” for students – which might include extra time, access to technology and offering alternatives to writing in work. But many parents find theirs falls short.

According to an All-Party Parliamentary Group for Dyslexia and Other Specific Learning Difficulties report from 2019, “47 per cent of parents or carers of a child with dyslexia spend over £1,000 per year more” than on children without learning difference; a figure that’s likely increased since then. It’s one thing to hire tutors for your children because you want them to have an edge. It is something else entirely to pay for tuition so your children can be average.

In my experience, there’s a postcode lottery. Rory’s primary school was located in a borough which had a dyslexia-specific outreach provision that provided training and resources. Unfortunately, his secondary school, which is in a different borough, has no such provision. He gets no in-school interventions beyond basic ‘reasonable adjustments’.

Rory left his primary school in year five due to his dysregulated outbursts to began an alternative learning placement. Since the start of secondary school, he has been educated at home, working one to one with a teacher remotely, as a means to curb his school refusal. He feels safe, isn’t getting bullied, and he prefers it – but he is extremely lonely as he has no school friends.

Two years ago, an American friend in primary education introduced me to Lindamood Bell, a system that uses a research-backed multisensory approach to help students attack and decode words. It sounded too good to be true, and the cost – £170 an hour – gave me pause.

But I needed to do something. I haven’t heard from a local authority caseworker in two years; they do not return calls nor emails, and Rory’s legally required educational psychology assessment, which should provide guidance and support not only for his dyslexia but also for autism, ADHD, and anxiety – is five years overdue.

Specialist secondary placements were rejecting him because his Education, Health and Care plan is out of date. The strain on Rory’s self-esteem and self worth resulted in him being anxious, depressed, struggling with disordered eating, physical outbursts, and suicidal ideation.

Rory accompanying his mother, who is also a poet, to the Sylvia Plath Literary Festival in Hebden Bridge in 2022 while she gave readings and led poetry workshops. He is surrounded by people who love reading. (Photo: supplied)

The Lindamood Bell centre in Notting Hill gave Rory a free one-hour assessment, and told us he needed 200 hours of instruction to catapult him out of year 3 reading level up to year 8.

Despite my PhD and teaching qualifications, I absolutely do not have the income to pay for help. I’m freelancing from home to manage Rory’s care, and my income barely scratches the £21K mark.

What I do have, in the most morbidly lucky way, is personal injury settlement money from a balcony collapse that occurred when I was 23, and left me in a wheelchair for months. I planned to lock away that money for medical care when I finally hit the point that I’m too old to continue working. But every day the attainment gap between Rory and his peers was widening. I was left with a choice: him or me. I chose him.

He started instruction in September. For two hours every day, he makes eye-hand-brain connections until the skills are so embedded he doesn’t notice he’s using them anymore. By the time he finishes year 8 this July, he will have made five years’ progress in one academic year.

His attitude about reading is slowly changing, too – he will do it for pleasure now. I get very excited by this and that puts him off a bit, because he is, after all, 13. There are still issues with his self-esteem (again, still 13) but that heaviness he carried seems to be lifting – some of his sparkle is returning.

Rory in a session, using a light sabre key chain as an ‘air writing’ tool that helps him visualise words (Photo: supplied)

I had hoped we could slide him back towards mainstream school for GCSE, but he is reluctant – he likes the independence and control he has with remote learning and the ‘safety’ it provides, and this may just be what the support for his ADHD-autistic profile looks like.

Understanding of dyslexia – and the talents it can bring – is improving. “Dyslexic young people often have strengths in creative thinking, problem-solving, and practical work,” says the BDA. “These talents are sought after in the workplace but may not be fully recognised through traditional exams.” Data last year showed employers in the UK are seeing the advantage of hiring neurodiverse workers – with a sixfold rise in job advertisements that mentioned conditions such as autism and ADHD.

While this shift is welcome, it will take a while to root, and dyslexic children need to get through secondary school and on to some kind of qualification so they can enter these talent pools.

Rory is currently at 289 hours, and potentially may stop at 300. He is doing another assessment this week, but it looks like I will be spending about £50,000 on this tuition.

He isn’t quite done, as he needs to apply his literacy skills to all his subjects, and that can be difficult for even normie kids. But learning how to learn, to work with how his brain works, not against it, is worth my future if it means he now has one.

Dr Cat Conway is a journalist and literature scholar who lives in London