When your kid is diagnosed with dyslexia

Learning that my daughter had dyslexia was devastating—all I could see were the challenges ahead. Now that we understand what it is and what she needs, we've discovered how special her brain really is.

Collage: Amedeo De Palma

“Mama, can we go for am ice?” That was the way our first-born, Beatrice, all fluffy ringlets and ruby lips, would ask for ice cream the summer before her third birthday. We found this turn of speech totally charming, if oddly persistent.

Us: “Say ice.”

Her: “Ice.”

Us: “Say cream.”

Her: “Cream.”

Us: “Now say ice cream.”

Her: “Am ice!”

Cute, right? Nothing serious. Certainly not an early sign of dyslexia. Or maybe it was. That’s one of the many tricky things about dyslexia. Beatrice was not late to talk. She was—is—chatty, articulate, expressive. She had my curls, my flair for the dramatic and my love of school, so I assumed she’d follow a similar path—dance, theatre, degrees in English and French literature. But in grade one French immersion, she shut down, her grades were troubling, and her teacher reported she was silent in the classroom. It must be the expected dip that comes with learning a second language, we thought. When she repeatedly blanked on the alphabet and had trouble counting to 20 in either language the summer before grade two, however, we began to worry something more was going on. The anxiety felt like a stone in my stomach.

Four months later, after an informal assessment with a tutor and psycho-educational testing, we had a diagnosis: Beatrice has dyslexia—a language-based learning disability that explains her difficulty with reading and writing.

Nina, age 11, describes the hardest part of having dyslexia.

I was—and still am, depending on the day—gutted. I know there will be no magical light bulb moment, as in, “One day it just clicked for my kid—now she’s reading Harry Potter!” I envy those parents and those kids. Reading will come, but it will take time, patience and a lot of work, for Beatrice and for us, as her parents and advocates. The challenges of dyslexia shift over the years; it’s a lifelong condition. My heart breaks that this shadow will follow her through her school years and into adulthood. That she feels and will continue to feel not good enough, fast enough, smart enough. I just don’t want her to have to struggle. Not for this. The open-endedness of the condition and the words used to describe it—learning disability—worry me.

“Some parents are fearful of labelling their child, but it’s really about getting to know how they learn and what their strengths are,” says Marie Foley, a literacy instructor in Toronto. She’s especially passionate about helping kids with dyslexia because she has it too, though she didn’t realize it until she was 40, when one of her daughters was being tutored. “In the absence of that information, that label, kids begin to think they’re stupid, that there’s something wrong with them.”

The key to understanding dyslexia, I have found so far, is to think of it this way: The brain simply works differently, so it needs alternative tools to take in and retain the information that is stored automatically by others. There is nothing deficient about kids with dyslexia. In fact, the way their brains work is actually quite magical.

Dyslexia is a neurobiological glitch—a functional variation in the brain that makes reading more difficult. People with dyslexia rely more on their right brain (the centre of holistic thought, creativity, intuition, music and art) and less on the left (where analytic thought, language, science, logic and math reside). Reading a word, let alone a line or paragraph, takes a much longer trip through the right brain.

I’d always imagined dyslexia as letters jumping and floating or disappearing from a page. This visual quirk—inversions, substitutions, additions or omissions of letters and words—is only part of the story, experts say. A key factor in the reading difficulties most people with dyslexia have is grasping the separate speech sounds within a word and learning how letters represent those sounds. They might have trouble understanding vowel sounds and how they change depending on the construction of a word, or distinguishing how “ch” sounds different in words like “chair” and “Christmas.” Dyslexia is rooted in phonological processing, which is the understanding of oral language, the ability to identify and blend sounds, to rhyme, to segment words—remember Beatrice’s “am ice?”—and sound out even nonsensical words. It doesn’t stop at reading difficulties; it also affects writing, spelling and even math (numbers are symbols, just like letters are).

In the aftermath of the diagnosis, I kept wondering what I had missed. What more could I have done? What had I done wrong? Turns out my chant of “sound it out” every time we read together was way off base: She could not simply sound it out. And she was not lazy or unmotivated, as I had assumed when my frustration peaked. She was just stuck.

As Marlene Stern, a Toronto psychologist who performs psycho-educational assessments told me, dyslexia, like all learning disabilities, is not a lack of intelligence or drive. “Kids with dyslexia have average or above-average intelligence. Some are gifted. But there’s a discrepancy between their potential and their achievement,” she says. “They’re bright enough and should be reading, but they’re not.”

Dyslexia covers a spectrum from mild to profound, and also runs in families—one member might be a terrible speller while another struggles to decode even single-syllable words. As if learning Beatrice had it wasn’t enough of a bombshell, it was a double shock to my husband, Scott: He’s a successful architectural technologist, but as a kid he struggled in school, was always a slow reader and writer, and grew up feeling “behind” compared with his peers. He remembers crying at his teacher’s desk when she wanted to review his work with him. Beatrice’s diagnosis gave him a measure of relief, that his struggles may not have been entirely his fault, but along with that, he felt guilt. A lot of guilt, actually, that he has given her this thing that will follow her forever.

And, yet, it’s surprisingly common. One or two kids in every class has dyslexic tendencies. Of the kids with learning disabilities, 85 percent experience difficulty in reading and language processing, and the International Dyslexia Association estimates that 20 percent of the general population have some symptoms, including slow or inaccurate reading, poor spelling or writing, or mixing up similar words. “In the school system there’s a great deal of pressure to ‘move along, move along,’” Foley says. “The trouble is that resources for assessments are limited. Kids with dyslexia are not often at the top of the list because they’re very academically bright and not obviously in need.”

By all accounts, we caught Bea’s difficulties at the right time—in grade two, when reading skills start to solidify. Though educators argue that kids with dyslexia and other learning disabilities can be successful in French immersion with the right help, our tutor told us that keeping her in French would have been like placing cinder blocks on her feet while pushing her to move forward. We switched her to the English stream as soon as we could, which immediately boosted her confidence: She was happy and participating again because at least she had the advantage of understanding what was happening around her.

The only way to know for sure if your kid has a learning disability is to request a psycho-educational assessment, which is done by an educational psychologist and offers a complete picture of a child’s learning style. There are two ways to do this: School boards administer the testing to kids of concern at no cost, but wait-lists are long, funding is limited and kids typically aren’t tested until well after there’s an obvious need—I’ve heard some frustrated parents call this the “wait to fail” approach. You can skip the line by going private. We’re lucky to have had this option and were quite surprised when most of the cost (assessments range from $2,000 to $4,000) was covered by our health benefits from our employers.

We had no idea how to find the right psychologist, but as with every step along this path, we drew on the experience of other parents. “It’s so important to find parent mentors,” Foley says. “Find a mentor who’s a few steps ahead to show you the way—dyslexia is a continuum.”

Every psychologist works differently, but ours met with Scott and me first to get the full picture: Beatrice’s health history and academic records, as well as our own health and educational backgrounds. Beatrice then went through two testing sessions, each about two and a half hours long. We didn’t make a big deal about the psychologist, and we certainly didn’t refer to it as “testing.” Bea was just excited about meeting people who would help her read. She excitedly went in with snacks in her backpack, while we waited and joined them for breaks. The fourth and last session was again with just Scott and me, to go over results and learn about the next steps. “I want to help parents better understand their child’s challenges and help them deal with it emotionally, too,” Stern says. “Then they’ll be better able to handle it for their child.”

I had cried in the initial interview, and I wiped away tears in the final meeting as well. Our psychologist offered plenty of tissues and told me she’s used to this emotional fallout, but that follow-up testing in the years to come—which is recommended to gauge a kid’s progress and create strategies to help them as they move through school—would take a very different tone. “She will read,” she assured me. “They always do.”

Psycho-educational report in hand, we went to the school to advocate for support. This support is encoded in a document, called an individualized education program (IEP) that the teacher writes. It lays out what your kid needs to be successful: accommodations or modifications that can be made in the classroom, one-on-one time with a special education teacher and other resources. For instance, some kids with reading and writing difficulties find it hard to focus, are unable to read out loud to the class, panic when it comes to pop quizzes or take longer to complete assignments. So a child’s IEP might stipulate that he sit at the front of the room, close to the teacher, and that they spend one-on-one time reading together, or that the teacher will prep him for a test and give him extra time to complete work.

One thing I learned when we were IEP-bound: While we were able to get our psycho-educational assessment fairly quickly, waiting on the school to initiate the plan was another matter, as it requires the participation of not only the teacher but also the school’s principal, psychologist and special education coordinator. I had to be very persistent to make this happen. We’ve been so lucky that Bea’s grade 2 teacher is John Mack, an intuitive, accommodating teacher. With 22 years of experience, Mack began making the adjustments he thought Bea needed without waiting for the report or for an IEP to be formalized. For kids struggling with reading, he says, this includes a systematic look at phonics and more one-on-one reading time. And because being asked to do written work can be paralyzing for kids with dyslexia, Mack will accept oral answers as an alternative to written ones. “My job is to assess her understanding of concepts. She totally knows the answers—she just can’t put them in writing yet,” he says.

Much has changed for us in the past six months. Bea sees a tutor three times a week and receives extra support at school, and her reading has progressed a whole grade level—from kindergarten pre-readers to grade one–level books! But while it feels like we’ve come a long way, I know this is just the beginning—or at least my mentors tell me so. The challenges morph. There will be a new teacher and a new IEP process each fall, and once she becomes more comfortable reading, the focus will shift to boosting skills in math and writing. Dyslexic kids typically have ongoing issues with memory and organization, plus they have to cope with the stress of being a slower worker and the impact of all of this on their self-esteem.

It’s possible to learn to be a great reader, but there is no cure for dyslexia. It’s not uncommon for university students to have accommodations that suit their learning style. Dyslexic adults often gravitate to fields that play to their strengths, but still have tricky areas—for the time and effort it takes to write an email, they may avoid it and favour phone conversations instead. Dyslexia will always be there, in one way or another.

Most days Beatrice is happy and engaged—except when she’s exhausted, withdrawn and seems sad. “School can be really hard for kids with dyslexia,” Foley says, her eyes tearing up with memories of her own struggles as a child—struggles her daughter still experiences in high school. “These kids are guessing as they read, looking for clues to the story in the pictures and context. Language is a mysterious code they can’t crack. They’re so vulnerable, just waiting to make their next mistake. It’s a terrible feeling.”

We rally around Beatrice: We applaud her progress and successes, we encourage her passions, we practise mindfulness when she has trouble sleeping and we make sure she has plenty of time to play, make art and rest. We remind her that every brain works differently, that everyone has things they’re great at—for her, it’s art—and things they have to work a little harder to learn.

And despite all the effort it takes, all the changes she’s been through, she still says her favourite thing to do at school is read. This reminds me of a line I came across from a teacher who is also dyslexic: Children who struggle to learn are often the ones who enjoy it the most. There is nothing passive or automatic about learning—kids with dyslexia work very hard, developing coping skills and then incredible resilience and intellectual curiosity along the way. “These kids are uniquely smart and creative. They are extremely thoughtful and insightful about how the world works. They see everything differently. It’s just their orientation—like breathing,” Foley says. “They are the instigators of innovation, the minds of the future. The kids who struggle to spell ‘cat’ will give us the solutions to make the world better.”

A beautiful (dyslexic) mind
When you’re handed a dyslexia diagnosis for your kid, there’s so much focus on all of the obstacles that lie ahead. The knee-jerk reaction is to cure it—fix it, smoke it out, bash it to pieces, eliminate all traces—so your child can return to her previously perfect state. But what about the flip side? What about the strengths and abilities that are particular to the dyslexic brain?

As a mom finding out her kid will likely always struggle, I found that The Dyslexic Advantage by Brock L. Eide and Fernette F. Eide kept me from viewing her diagnosis as a lifelong curse. This book argues for all the wonderful, unexpected gifts of a dyslexic brain:

* Strength in spatial reasoning: putting together 3D perspectives (perfect for artists, architects, engineers, designers, builders and inventors).

* Interconnected reasoning: the ability to see connections others might miss, to easily shift perspective or to get the big picture.

* Narrative reasoning: the ability to learn from experience and remember facts as experiences. These people tend to have strong, vivid memories; they are the storytellers and family historians.

* Adaptability and foresight: The capacity to work well in a changing environment and make predictions, which is essential in business and scientific fields.

 

Henry, age 9, lists the advantages of having dyslexia.

 

Don’t stop reading
Reading with your kid isn’t just pleasurable; for dyslexic kids, it builds up their knowledge bank. Don’t settle for basic books they’re able to read—they’re bright, and want and need to be challenged. When reading to them (or helping them choose an audiobook), always opt for books above their grade level, as that will build their vocabulary. When they start reading more complicated texts, their understanding is enriched as they’ve heard these words before. And read all kinds of books. Graphic novels are especially good, because when kids stumble with words they can use visual cues to decode meaning.

Nina talks about what it was like to learn how to read with dyslexia.

 

A version of this article appeared in our June 2016 issue with the headline “A different way of thinking,” pp. 74-8.

Read more:
Signs of dyslexia
Is this what reading is like for my dyslexic kid?
Coming to terms with my daughter’s learning disability

 

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