The Pain and Tears to Get to a Dyslexia Diagnosis

This blog was founded to be a family travel blog. But my motivation for creating the blog actually came in part out of our daughter’s struggles with dyslexia and ADHD. I put this blog up one spring thinking that it might be a fun project for us to work on together. Perhaps it would give me a platform to write and her a platform to create video. This was two and a half years ago.

And now I am finally prepared diverge and to talk about our dyslexia journey. Schools start testing in Kindergarten. Imagine our surprise when after that first round of testing we were informed that she was behind in reading. Well, she did go to play based preschools so perhaps that was why.

The Early Pain & Signs of Dyslexia

But in first grade came spelling homework. Homework that was supposed to take ten minutes took hours. I tried bribery — doing homework at Wendy’s where a Frosty awaited once she was finished.  I made her stay at the dining room table with her homework from the moment we got home and she couldn’t get up until it was finished. Even though her friend was there with us. Through all the tears. Her friend was picked up before homework was finished.

I told the teacher something isn’t right. Could we test her? I lamented to my mother who is a retired speech language pathologist in the state of Texas. She said it is possible it could be dyslexia or dysgraphia. I had no idea what either were. But she said to tell the school to test for it. That they were required to do so. I tried. I was told “we don’t test for dyslexia”.

Tutoring was suggested. While a good idea, I felt that we really needed to understand what the problem was before blindly making her work even harder and shedding even more tears. Finally, I made a good decision.

The Effects of Not Diagnosing Dyslexia

Our daughter’s confidence disintegrated. She thought she was stupid. We couldn’t understand. We knew she was such a smart girl and just couldn’t understand why she couldn’t pick this up. It wasn’t like we hadn’t read a million books to her. She even had many of those books memorized, and would pretend read them to us. We were at a loss of what to do.

Our Path to Identifying Dyslexia

A month or so before second grade began I reached out to a friend who had changed careers and recently went to work for the school district as a speech language pathologist. We had coffee. She explained that in the State of Colorado a diagnosis of dyslexia is considered a medical diagnosis. The schools may be required to respond to your request for additional testing but they won’t diagnose dyslexia. But she said, reach out directly to the school’s special education director and reading specialist and ask for testing.

I did. The school’s reading specialist responded immediately. She said she’d be happy to test our daughter to see if she qualified for a special program she was running. It was actually designed for teaching reading to dyslexics. Come to find out that she was working on her masters degree in dyslexia and her son is dyslexic. She suggested private testing and provided a list of potential resources in Denver. Her feeling was that knowledge is power.

Reading to auntie at age 3.

Knowledge is Power

Wow, how right she was! We had our daughter tested. The psychologist recommended that I attend the International Dyslexia Association conference (Reading in the Rockies) that was happening the following weekend. Even though she wouldn’t have her full report or diagnosis back to me until after it.

I attended. It was a real eye opener. I attended one breakout session that simulated us having dyslexia. We were given basic tasks but as they would be seen by someone with dyslexia. We had to read a page but the letters were all jumbled and backwards. The feeling of impossibility was overwhelming. And the desire to cheat to not look stupid was tremendous. I bawled the whole time. Now understanding how I had made my daughter feel not letting her up from the dining room table until she completed the impossible. For thinking she wasn’t trying hard enough. I am crying again now just thinking about it.

Want to understand dyslexia or other learning differences? Check out this online simulation from Understood!

The Understanding that Comes with a Dyslexia Diagnosis

We got the complete report back a few weeks later. She was only mildly dyslexic but also moderately ADHD (inattentive type). I had a hard time believing this part of the diagnosis but it didn’t come as a surprise to her teachers. The report included a list of recommendations. The first that I did was read the book Overcoming Dyslexia by Sally Shawitz. It became my bible. It explained the science behind dyslexia.

Dyslexic brains are just wired differently. They have a hard time learning to read and write (encode and decode) but also have many strengths. Because of their visual spacial abilities many become architects. And probably just having had to work harder and more creatively many become entrepreneurs. I checked out books for my daughter on famous dyslexics. Albert Einsten, Walt Disney, Richard Branson, Leonardo da Vinci, Steven Spielberg, Steve Jobs and so many more.

With famous dyslexic Einstein and first niece.

What a Dyslexic Student Needs

So now we understood. But how to help her? Other than in her understanding that she’s just different and not at all stupid, actually smarter in so many ways. She qualified for the special reading program at her school. It was multi-sensory and intensive in a small group format. Special accommodations for both dyslexia and ADHD were implemented in the general classroom. Seating in a less distracting area. More time. Keyboarding.

We were lucky to be at a school that already taught reading and writing in the Orton Gillingham method, a multi-sensory method developed for dyslexics. It is likely that was why she was only mildly dyslexic at the time of testing. So many schools don’t even teach in this method that is better for all students.

It has been quite the mountain to climb and I am sure it will continue to be. But we also feel so lucky that we are stubborn people and had educator resources (my mother) who had a clue as to what the problem was. Then a friend to explain how the system works. We were able to identify it early enough for her to have gotten the help she needed to successfully learn to read. Special reading programs are much more effective prior to grade three. And, then to have been in one of two schools in the entire district that offer a special reading program for dyslexics. We feel lucky and grateful. Writing continues to be a struggle but she is a fluent reader. She’s now reading the fifth book in the Harry Potter series!

The Gift of Empathy Through Dyslexia

And, I think we are all more empathetic because of this experience. Now when I see a kid fidgeting, not paying attention or misbehaving, instead of thinking that’s a “bad kid”, I wonder what is going on in that kid’s life. I wonder what kind of learning difference they may have to be acting out that way.

My Wishes for Our Schools

One in five students, or 20% of the population has dyslexia. Reading programs designed for dyslexics are proven to also be beneficial for mainstream students.

  1. I wish that every school would screen for dyslexia in first and/ or second grade. Understanding can make all the difference in a student’s confidence.
  2. I wish that every school would teach reading in the Orton Gillingham method, or other scientifically proven multi-sensory reading program.
  3. I wish every school would have an intensive small group program available to all students identified as dyslexic.
Getting a dyslexia diagnosis in Colorado can be confusing and frustrating. Yet it is needed to get 1 in 5 children the help they need to learn. What is dyslexia, what dyslexia strategies can help? Here's our story! #reading #dyslexia

Getting a dyslexia diagnosis in Colorado can be confusing and frustrating. 20% of children are dyslexic and many don't get the help they need even though we know what they need. What is dyslexia, what dyslexia strategies can help? Here's our story! #reading #dyslexia

Was this post helpful? Do you have a similar story on getting a dyslexia diagnosis? Tell us below!

We haven’t yet seen this documentary but the trailer articulates our feelings so well.

The Pain and Tears to Get to a Dyslexia Diagnosis

2 thoughts on “The Pain and Tears to Get to a Dyslexia Diagnosis

  • February 16, 2019 at 4:21 pm
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    I really enjoyed reading this article. My son was diagnosed last month. It has been a struggle. I’m so many ways, my story related to this article.

    Reply
    • February 16, 2019 at 11:59 pm
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      So glad that it was helpful, Lori! There are so many famous people who were dyslexic. I think the understanding that they they are actually smart kids, just in different ways, makes all the difference. We read lots of stories about Steve Jobs, Albert Einstein, Walt Disney, etc. Hang in there and fight to get him the help he needs!

      Reply

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