My Daughter Has Dyslexia and Everyone Missed It

Suzie Glassman

How I caught it and what to look for. by Josh Applegate on Unsplash

Dyslexia is called the hidden disability. This is because children (and adults) who have it are often exceptionally smart, and the signs are not always apparent to observers — even after they’ve begun school.

In fact, most kids diagnosed with dyslexia (which affects anywhere from 5–15% of the population) have an average to above-average IQ. Often parents and teachers look at a bright child who struggles to read and assume he or she is lazy, unfocused, or simply not trying.

This characterization is precisely what happened to my daughter. She’s now in third grade, and all of her previous teachers told me she was fine whenever I expressed concerns. She knew just enough to get by unnoticed (I later learned educators call children like her stealth dyslexics).

It’s also super easy to question yourself as a parent. Her older brother is gifted in reading, and I assumed my perception of her struggles had more to do with the fact that I was comparing her to her brother — expecting her also to be gifted. I tried to cut her slack, but time and again, I accused her of not trying hard enough.

The real punch in the gut is that kids with dyslexia are trying. They’re trying harder than anyone else.

According to Hope Academy for Dyslexics,

Students with dyslexia can appear lazy to the adults around them. Often, they have learned that it is better to not try at a task they know they will fail than to continue to attempt the impossible. Research on the brain using functional MRI shows that dyslexic people use a different part of their brain when reading than non-dyslexics. They are working as hard, or harder, than their peers with less results.

I wish I could go back to all the times I said she wasn’t working hard enough. It breaks my heart and fills me with guilt.

If I can help another parent recognize the signs earlier, I’ll gladly outline our story, what the school missed, how to advocate for your child, and how to find resources your child may need.

Our Story

The first knowledge we had that our daughter might be struggling to read came from the school literacy specialist in second grade. She emailed and let me know her scores were low enough for them to step in and offer literacy intervention.

For the remainder of the year, my daughter left class twice a week for special 45-minute instruction. I later found out she was learning the Orton-Gillingham (OG) approach — a method that teaches literacy when reading, writing, and spelling does not come easily to individuals, such as those with dyslexia.

Despite the intervention, no one told me she could have a learning disability or expressed concern about how slowly she reads.

When we met for parent-teacher conferences in the Spring, her regular teacher assured me my daughter was doing well, and we shouldn’t be concerned. She called her bright, focused, and a joy to have in class.

I left with a nagging feeling in my gut that her teacher was missing something. I scheduled a meeting with the principal and voiced my concerns that her teacher wasn’t grasping our daughter’s difficulties.

Right as the principal agreed to look into it, everything closed due to COVID-19. I decided to go with the assurance from her teacher and dismissed my concern as worrying too much.

Suddenly, she and I were forced to work together to get through her schoolwork day after day. We fought. We cried. I panicked. Then, I gave up. I decided to let the school year end, and, hopefully, in-person learning could resume in the Fall.

In-person learning hasn’t fully resumed. She’s part of a hybrid program and goes to school two days a week. The rest of the week, she’s online.

One day, she and I were going over her math together. She kept messing up the numbers. She put the value in the ones place in the hundreds place, and she copied numbers on to her page in messed up order.

All of a sudden, a thought popped into my head. Does she have dyslexia? I knew nothing about the learning disability. Zero.

Yet, I remembered she spent last year learning the OG approach to reading, and her scores drastically improved. So much so the school said she no longer needed the intervention (why you would take away an intervention that works is infuriating, btw).

Regardless, I quickly emailed her third-grade teacher and asked if she thought the diagnosis fit. She didn’t say yes, but she admitted to having concerns.

I broke down sobbing. Not because I was heart-broken (that would come later) but because, for the first time, someone else acknowledged there could be a problem. I wasn’t crazy or over-reacting.

The weight of questioning my daughter’s lack of motivation, what seemed like lack of effort, and pure stubbornness to complete her work started to lift.

I launched into a deep-dive over what dyslexia is and how it’s symptoms manifest in early learning.

What is Dyslexia?

The International Dyslexia Association (IDA) provides the following definition:

Dyslexia is a specific learning disability that is neurobiological in origin. It is characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities.
These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge.

Dyslexia has nothing to do with intelligence. Brain imaging studies show differences in the brains of people with dyslexia and those without. In particular, people with dyslexia have an enlarged right hemisphere. These differences are found in areas of the brain involved with key reading skills.

You’re more likely to have dyslexia if someone in your family also has it. However, my husband and I have no known relatives with the disability. It may just be that dyslexia often went undiagnosed until the early 1980s.

The impact on the child is different across the spectrum. However, all experts agree, if caught early, children can become skilled readers.

The need to discover dyslexia early is why it’s essential not to take your child’s teacher’s word for it. Although classroom teachers are trained educators, they generally have very little specific training about learning disabilities.

In my experience, if your child is on the edge, it’s up to you to force the school to act. If you think there’s something wrong, don’t wait. Dyslexia can be caught as early as preschool and Kindergarten, even though kids at that age aren’t reading yet.

The Inconvenient Truth

Heard first on NPR’s, All Things Considered,

Megan Lordos, a middle school teacher, says she was not allowed to use the word “dyslexia.”
She’s not alone. Parents and teachers across the country have raised concerns about some schools hesitating, or completely refusing, to say the word.

I experienced the same. When I asked if my child could have dyslexia, the response was, “I’m not allowed to say anything.”

I later learned teachers are allowed to utter the d-word, but common misperception remains they can’t (at least where I live). Why?

The Individuals with Disabilities Education Act (IDEA) requires schools to help kids with dyslexia. NPR says some kids may get a trained reading specialist, others could get one-on-one tutoring, and still, others might receive adaptive technology.

Hal Malchow, of the IDA, says,

There’s another factor at play: money. Those special services are all things the school district could have to fund.
And since there are so many American school children who have dyslexia, that price tag adds up — and school budgets are tight.
Schools engage in strategies to lower their special education expenses. And dyslexia is by far the largest group within the special education category.

A child’s ability to read should never be a budgetary issue, yet COVID is creating more challenges. School budgets are tighter than ever, and some are rolling back second-tier interventions like the one my daughter received in second grade.

It weighs on me how fortunate I am. I’m lucky enough to work part-time from home. If I hadn’t had this time with her, we’d still be in the dark. I can’t help but think about all the students who go unnoticed because their parents and their teachers don’t have the time. It’s not fair. Not by a long shot.

What to Look For

There are signs as early as preschool; however, I’m going to cover the signs for elementary-aged children, as that’s what I know the most about.

In Elementary School:

Dysgraphia (slow, non-automatic handwriting that is difficult to read)
Letter or number reversals continuing past first grade
Extreme difficulty learning cursive
Slow, choppy, inaccurate reading — guesses based on shape or context, skips or misreads prepositions (at, to, of) ignores suffixes, can’t sound out unknown words
Terrible spelling
Often can’t remember sight words (they, were, does) or homonyms (their, they’re, there)
Difficulty telling time on a clock with hands
Trouble with math: memorizing multiplication tables, memorizing a sequence of steps, directionality
Extremely messy bedroom, backpack, and desk
Dreads going to school, complains of stomach aches or headaches, nightmares about school
A close relative with dyslexia — the biggest warning sign of all

My daughter has all but the last two. Even so, her teachers missed it. That shows how much you have to pay attention to and rely on what you see and not what the school sees.

If any of the above checks a box in your head, keep digging and don’t stop. It’s easy to question yourself. Everyone else will try to tell you that you’re worried about nothing.

I promise it doesn’t hurt to approach the school. So what if you’re wrong? At least you’ll know.

How to Approach Your School

This brings me to the part about advocating for your child. Know your rights. It varies by state, but under the IDEA act, if you request special testing for your child, the school is required by law to follow through. Often, the school only has so many days to get it done (in Colorado, it’s 60).

Wrightslaw is a comprehensive and searchable website. I suggest checking it out.

Document every response and correspondence. Make it crystal clear you are asking for your child to be tested.

I emailed the principal and her teacher and then held a virtual meeting with the Multi-Tiered System of Support Coordinator (MTTS). While lovely, she emphasized my daughter’s higher test scores and that she didn’t show up on the radar of kids needing intervention. She was implying my daughter didn’t need special testing.

I’m sure it depends on the district, but in this case, she tested above the 40th percentile on the I-Ready assessment (the test our district gives to every student). For reading, she scored in the 67th percentile and, for math, the 47th. The fact she scored well is either a sign the assessment isn’t covering the right things (it doesn’t measure fluency, a key marker of poor reading) or that she’s bright enough to work around her disability.

The MTTS coordinator also cautioned that my daughter would miss valuable classroom instruction time if they pulled her for testing.

Tell them you want the testing anyway. Say it in writing.

Resources and Outside Testing

Your school can test your child for gaps in their learning, but they won’t give you an official diagnosis. This testing may be perfectly adequate, and it’s an excellent place to start.

Even without an official label like dyslexia, if the school finds your child sufficiently behind, it has to provide special services under the IDEA act.

According to the IDA,

Most people with dyslexia need help from a teacher, tutor, or therapist specially trained in using a multisensory, structured language approach. It is important for these individuals to be taught by a systematic and explicit method that involves several senses (hearing, seeing, touching) at the same time.
Many individuals with dyslexia need one-on-one help so that they can move forward at their own pace. In addition, students with dyslexia often need a great deal of structured practice and immediate, corrective feedback to develop automatic word recognition skills. For students with dyslexia, it is helpful if their outside academic therapists work closely with classroom teachers.

I wanted more information than the school could provide, so I chose to test at an outside learning center. This costs money — a lot. In my case, $1,300. I did my homework, talked to several advisors in this space, and found this amount is the going rate. Insurance does not cover it, as they consider it educational and not medical.

We are waiting for the entire eight-page report to come back, but her evaluator was able to say after four hours of testing, my daughter has dyslexia. I felt immediate relief — no more second-guessing myself. We can take the report to the school. Luckily, her school has already agreed to accept the results. But, as a word of caution, not all schools are so agreeable.

The IDA website has a list of providers by state.

Post Diagnosis and Letting Go of Guilt

We’re in the process of developing a plan that will give her the best chance to succeed. I am hopeful for her future.

My emotions go back and forth from anger to relief, from guilt to grief. I have a great therapist who helped me sort through my anger at the school. As parents, we want our children to be “seen.” It hurts that she wasn’t. Yet, anger won’t change anything. I can blame them, but the fact is she’s at a great school. Anyone could’ve missed it.

As far as guilt, my daughter isn’t upset with me. She forgave me for all the times I yelled at her in frustration. When this started, I told her we were trying to find out how her brain works and use that information to make school easier for her. She now has a tutor she sees twice a week after school who she loves.

If you find yourself in a similar situation, my therapist says its best to be open and honest with your child. Apologize for things you might have said and acknowledge you’re aware of how hard he or she is trying to do well.

Final Thoughts

October happens to be worldwide Dyslexia Awareness Month. It’s a great time to spread awareness on social media and through organized events. The IDA has it’s own #IDAGoRedforDyslexia Campaign.

Anecdotally, I’ve heard from professionals in the dyslexia space that many parents are now coming forward with concerns after spending time working with their children at home.

Two of the leading testing centers in Denver are on a 6–8-month waitlist.

If you find your child has dyslexia, there are many positives. Due to their enlarged right hemisphere, dyslexics are often highly creative and original thinkers.

According to Psychology Today,

A 2004 study, measured both the quantity and originality of ideas generated by dyslexic and non-learning disabled students; it showed that dyslexic students tended to perform better than non-learning disabled students in both regards.
In line with this, a more recent 2016 study found that dyslexic individuals were superior at connecting different mental fields through unusual combinations of ideas when compared with controls.

Some of the most creative minds in history were/are dyslexic, including Thomas Edison, Stephen Spielberg, F. Scott Fitzgerald, Richard Branson, and Charles Schwab.

I am excited about her future now that I know more. If there’s any way I can help you, please reach out!

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I write about health and fitness with the goal to help you live a healthier, happier life.

Denver, CO

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