Ten Years to Dyslexia: The Diagnosis We Shouldn’t Have Had to Wait For

Sometimes parents recognize red flags in their child’s development. Sometimes they do not.

When our oldest was in first grade and struggling to decode words, I could tell something wasn’t quite lining up. I reached out to her school and asked whether an evaluation might be helpful. She landed right on the borderline of qualifying for services, and the guidance we received was reassuring: “Keep doing what you’re doing at home. It’s working.”

So we did.

Even as she continued to score just below average on state tests and the same concerns lingered, the message stayed consistent. Keep doing what you’re doing. Over the years, we practiced flashcards. We sat beside her through homework that took far longer than expected. We leaned into audiobooks, visual supports, and strategies to help her connect spoken and written language. For nearly a decade, that became our rhythm.

Each year, I shared my concerns with her teachers. To be clear, they saw a student who was diligent, respectful, motivated, and making progress. From their perspective, she was doing fine. She worked hard. She followed directions. She met expectations. Because of that, my worries did not always rise to the level of urgency, and I understand why.

As a special educator, part of me sensed that her struggles were not typical. But I also trusted the system. I trusted the professionals who cared deeply about her. Because she was coping, and because we were compensating at home, I did not push for further testing.

Then came high school. And with it, the headaches. Not normal headaches, but debilitating pain that took her out of activities and left her curled up in dark rooms. They were first misdiagnosed as migraines and later identified as cluster headaches. We saw eye doctors and neurologists, tried medications, scheduled MRIs, and even added acupuncture and cupping. We were doing everything we could to figure out what was happening. Yet we still had no answers and very little relief.

At the start of her junior year, when New York State implemented rules banning personal devices in the classroom, everything changed. She had relied heavily on her phone for audio support, and without it, the truth became impossible to ignore. With the increased demands of eleventh grade, she realized she could not make sense of the words on the page. They were not staying still. They were not connecting. Something was deeply wrong, and it had been wrong for a very long time.

That was when clarity finally hit. It was ten years too late and only after countless tests, appointments, tears, and frustration. Dyslexia. Suddenly everything made sense.

This time, I did not ask politely. I formally petitioned the district’s special education department for a full evaluation, citing educational law and our legal right to testing. At first, they questioned it. They wondered how a student could slip through for ten years without teachers raising concerns. They questioned the possibility before they even tested her. But as her parent, I could not step away from the concern. And once the evaluation was finally completed, she tested positive for visual dyslexia.

Visual dyslexia is a form of dyslexia in which the brain has difficulty interpreting what the eyes see. It is not an eyesight issue. It is a neurological processing issue. For her, letters appear to move or blur. Lines of text can shift, collapse, or drift on the page. Tracking from one word or line to the next is exhausting. The strain leads to headaches, fatigue, and an understandable avoidance of reading because it takes so much effort to force meaning out of something that keeps visually falling apart in front of your eyes.

It explains why my kiddo is bright, motivated, and high achieving, and yet has struggled silently for years. It explains the headaches. It explains the tears. It explains the constant effort she put in just to keep up.

And it breaks my heart that it took ten years for anyone to take this seriously.

I will share more soon about what this means for her schooling, how to navigate the CSE process, and the differences between 504 plans and IEPs. But today, I want to say this:

Parents, trust your gut. Listen to your children. If something does not feel normal, investigate. Ask questions. Push back. Hold others accountable. Do not wait ten years. Your child deserves help the moment they need it. 

And you are their advocate. You are their protector. 

That is the most important job of all.

“If any of you lacks wisdom, let him ask of God, who gives generously to all without finding fault, and it will be given to you.” — James 1:5