Working through the five stages of dyslexia

Dealing with my son’s diagnosis of dyslexia was like going through the five stages of grief. It took four years of sleepless nights and buckets of tears for both of us. There were so many days when I thought I’d never stop feeling broken-hearted for him, worrying that he would never learn to read or fail out of school by grade five and that it was all my fault.

Like most moms, I’d been in awe of how clever my baby was: His first little sounds, words and steps were astounding. My son was a bright, funny and sweet kid. He’d make up elaborate fart songs, dance constantly and was always willing to eat any strange kale recipe I put in front of him. Within weeks of starting French immersion in kindergarten, he was wowing relatives by throwing in the odd “merci,” “bonjour” and “ooh la la.”

But then the part-time science teacher took me aside. “I don’t know exactly what it is, but something is up with him,” she said. “I just wanted to let you know.” In hindsight, this kick-started the first stage of grief: denial. I thought I was the most clear-eyed person in the world. My parents were devout word worshippers, and books were my happy place. Education was a core family value. As a result, admitting that my son wasn’t reading felt as bad as using the word “feminist” in the wrong crowd.

It didn’t make any sense: How could my bright little angel have a learning disorder when he asked insightful questions like “Are zombies mammals?” “Does Iron Man pay taxes?” and, my all-time favourite, “How did the very first person die?”

Everywhere I looked, there was evidence to confirm my denial. I clung to factoids about kids posted on Facebook that reinforced the importance of outdoor time, guided play and engaged learning rather than literacy in kindergarten. I peppered my conversations with tidbits from groundbreaking studies in Iceland about not teaching kids to read until they are practically of dating age. I held onto teachers’ assurances like “Don’t worry, boys develop slower” and “Relax, he’ll pop—you’re pressuring him too much.”

Then came stage two—that’s when my temples began to pulse. My patience evaporated and I wanted to punch everyone in the throat. A principal from another school told me, off the record, “French immersion is ideally suited to little white girls who like to conjugate.” He went on to explain that kids who struggle usually flee to the English stream or their affluent parents pay for tutors. As a result, there isn’t any real demand for the system to provide extra help. Shockingly, the new undersupported special-ed teacher called me at home to ask my advice about learning disabilities. On my way to a weekly meeting with my son’s teacher, I bumped into the head of special ed. I excitedly told her that I was getting a scribe to help my kid express his thoughts on paper. She looked at me as if we hadn’t sat across the table in countless meetings and robotically responded, “You’ll need to get a hall pass if you’re going to be walking through the school.”

Yes, I was that mom that even the janitor fearfully avoided. When my child didn’t “pop,” I started to resent all the people who told me I was being hysterical or putting all my own baggage on his sweet little head. But my son would come home from his école sad, complaining of headaches and stomach aches and saying that he was the second dumbest kid in his class. He could converse in French on all manner of things, including lice treatment, but reading and writing were like Sanskrit to him. All of the educational tools I’d ordered online just exhausted him, sparking fights that usually ended with me telling him (cringe), “You’re not trying!” But he was. We both were. Even his teacher was trying. Still, no pop.

Fed up and desperate, I began to negotiate in my head. Enter stage three: bargaining. I went on all the field trips, volunteered and fundraised for the school. If I did more for the school and eased the teacher’s stress, surely they would help him read. I noticed my son could recognize letters but not the sounds they made. By the middle of grade one, all of his friends were reading in both languages. My anxiety was mounting. My husband would exclaim, “He’s smart! Listen to him talk!” So I did. He was fine, right? But that same insightful science teacher continued to discreetly inform me that my son wasn’t keeping up.

I hedged my bets and decided to have him assessed just to prove that there really wasn’t a problem. The school refused my request because he wasn’t on the “two-years-falling-behind list” and other kids had it worse. My frustration grew with each fruitless communication. At the start of grade two, his tutor broke the news to us: “This boy can’t read. He can’t write his last name. He is very far behind. You have to do something for him.” As she said this, she handed me a very large box of tissues and said “This is my job: I make mothers cry.”

Cut to stage four: depression. I cried for two weeks. I was crushed and felt like I was carrying around 150 pounds of darkness. I had failed my son. Suddenly, it felt like everyone else’s kids were reading. On Instagram, three-year-olds were finishing Charlotte’s Web. On Facebook, toddlers were reading Leo Tolstoy and Pema Chödrön while potty training. It seemed like the whole world could read, except my broken kid. If he was broken, I was broken.

Crying didn’t seem to help him learn to read any faster. There was nothing left to do but come to terms with the reality and finally enter stage five: acceptance. I got out of bed and started to learn about the three parts of reading: sight words, comprehension and decoding. My kid had memorized words—big words—that he could recognize by sight alone. Damn, my boy could read, right? Wrong, because he hadn’t mastered decoding: the ability to sound out words. When we were finally able to get a proper psycho-educational assessment, my son was unable to read a list of words that he had never seen before: He didn’t know the sounds that letters made.

Armed with his diagnosis of dyslexia, I went back to his teachers with newfound hope. Sadly, I discovered that they weren’t able to teach kids with dyslexia, refused to admit it as a reality and carefully made sure that they weren’t violating his human rights to access educational resources. I couldn’t find the word “dyslexia” in the Toronto District School Board’s Special Education Plan. It was a catch-22 of sorts, and I found that, because they weren’t equipped with the ability to diagnose dyslexia or alter their teaching methods to accommodate dyslexia, they weren’t able to support my son.

At the beginning of April, my son was even more unhappy. During social studies, he had been relegated to the corner of the classroom with some picture books. Tears streamed down my face as I stormed into the classroom, demanding an explanation. His teacher was very apologetic but responded by saying “The assignment is to read the question and write the answer. He can’t do either. I have to teach the other 26 kids. I’m sorry.” I was devastated, for my son, for her, for all the teachers whose hands were tied, for all the other kids that I knew were in the same boat and for all the kids before and after him.

Thankfully, a saviour arrived during my son’s grade three year: A tutor who specialized in dyslexia helped my kid finally attach sounds to letters, allowed him to taste success and advocated for him at dreaded acronym-filled school meetings. This tutor/tear wiper advised us that grade three was a write-off, that he was being babysat and that we should start at a fresh school in September. She reminded me that she helped kids in grade 12 who couldn’t decode. Things could be worse.

After much research online and off, my husband and I met with yet another professional: an educational consultant who reviewed our son’s assessments and report cards, inquired about our finances and recommended schools that would work for him. She strongly suggested that our child would have the most success at a school that was solely and squarely focused on kids with dyslexia. We begged and borrowed, mortgaged the house and enrolled our son in a school that used the Orton-Gillingham (OG) system.

OG is a language-based, multisensory method that is cumulative and flexible. Kids learn the sounds by seeing, drawing, tapping and repeating, and they don’t move on until they’ve matched the correct sounds with the letters. Origins of language are studied to understand the complex linkages that the rest of us just blindly memorize. (Why is “theory” spelled like that anyway? Or “conscientious” or “phlegm”?) A bouncing ball aids in perceiving syllables, wooden blocks re-represent the number of letters in a word, and a “bumpy board” allows students to trace and feel the shapes of letters.

Within a month, my son could read—actually read. The best part was that he loved school, wanted to go, felt smart and was keeping up with the rest of the bunch. He wanted to attempt things he’d never done before, and he wasn’t afraid to try because he knew that success was a possibility.

All of a sudden, I had my life back, too. No more meetings, advocacy or crying over homework. But here’s where it got interesting: The day my kid started to feel great, I started to feel great. Then the phone started ringing and emails and Facebook messages started popping up. Turns out, my four-year struggle to help my kid read wasn’t unique. The news had gotten out that my kid was dyslexic and (wait for it!) was beginning to read.

Our family had beaten the odds, and people had noticed. As it turns out, I wasn’t alone on my little island of despair over dyslexia. Other families were embarrassed and shy, just like I’d been. I became the accidental poster child for advocating for kids with dyslexia. Soon, parents were coming up to me on the street with tears in their eyes, asking me not to tell anyone, meeting me late at night in parks to exchange tutor details and seeking the rare and valuable information of how to get affordable psycho-ed assessments.

Mostly, I found myself yelling at people who wanted me to yell at them, and my lecture was always the same: “Step the f*&k up. You are not being rude when you ask for help from the principal or when you complain about cutbacks to special education. Your child can’t speak for himself. Hopefully, the public system will eventually teach him to read, but at what cost? His self-esteem? That will affect him in every single thing he does—every relationship, job and interaction for the rest of his life. Stop denying that your child has dyslexia. Stop hiding from the labels. Sometimes labels can be the very thing that gets him the help he needs. And stop trying to teach him to read! Just love him! Get someone else to teach him to read.” And that was it.

I even yelled at a stranger who found me on Facebook and asked to meet for coffee. With tears in his eyes, he tried to squeeze the secrets of literacy out of me over my almond latte. I hugged him after I yelled at him. I hugged all of them—I felt all of their pain. I’d become the therapist for parents of kids with dyslexia. It helped me get over my embarrassment of sending my child to a private school, but I never got over my guilt for all the other kids left behind—I will never accept that.

I’m hoping that the final stage of having a child with dyslexia is love. I love having a child with dyslexia. Now that I’ve done my research and spent time with an entire school full of kids who have dyslexia, I understand how amazing these kids really are. They see the world in unique ways. They possess vocabulary and concepts beyond their grade levels. My son is very good at reading a room, constantly asks me how I’m feeling and can tell when I’m having a hard time. He tells me, “When I was a child [he], I was always thinking about five things at once” and “When you give gifts to people you don’t like, it’s called a moral sacrifice, mama.” Recently, he asked me, “What is the difference between destiny and fate?” I’ve looked it up many times and I still don’t know for sure. His thoughts are as big as his worries, and his words are as big as his dreams. Nothing about him is “normal,” and I wouldn’t have it any other way.

This article was originally published online in February 2018.

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