My Journey with Dyslexia

I’ve been meaning to write this for some time, and it isn’t going to be quick for me. This is my personal story. It is a much different story than others with dyslexia but perhaps it may help someone else in some way.

The more I learn about dyslexia and how the brain works, and looking back to my early years, I suppose there were signs.  My Grandma may have been the first to notice anything.  She was a librarian in a middle school and sometimes I would get to go with her to work and help out in the library.  One time, I don’t remember how old I was, she gave me the task of helping to retrieve books off the shelves. She wrote the call numbers on a slip of paper and sent me to find them. More than once I came back saying the book wasn’t there. After a couple times of going through the shelves with me, she realized I was transposing the numbers and looking in the wrong place.  She spent time with me trying different strategies, covering the numbers with my finger and uncovering them one at a time to locate the exact location of the intended book. It was slow, but I eventually found them all.

At school, I was in the middle reading group, not really struggling, but not at a fast rate either, until around 3rd grade. That is when I noticed how much the other students seemed to get through their reading faster than me.  I understood most of what I read, including small details that others seemed to miss, but it took so long.  Around this time, my mom suggested that we read together at night before bed some nights.  She would read a page or two, then I would read.  I remember liking it better when she read because my brain could just focus on the story while my eyes skimmed along (but I lost my place a lot). When I read, it took more time and energy. I would make a mistake and mom would say “look at that again.” I would go back, reread, figure out and go on.  When I got older, my mom confessed she tried not to do it too often to keep me from getting discouraged.  She would stop me when my mistakes changed the meaning of the sentence or just didn’t make sense at all.  She noticed that if I misread the tense of a word, I would change the rest of the paragraph or page to match automatically.  If I read the wrong pronouns (he/she) I would usually catch it in the next couple lines. She also noticed that I might skip over words and then stick in a word that would make the sentence make sense. Ultimately, I was unaware that I was making these mistakes.

And spelling! Spelling was so hard. My dad tried to teach me tricks to help me memorize words, but I still seemed to switch letters around or leave them out. I couldn’t remember when to use e or i and then there were so many extra letters that were thrown in unnecessarily in some words!

Even with most of this, I loved school. I loved math, and science. Art, music, and PE were also fun. I didn’t mind taking tests early on; that is until they started giving time limits.  I started getting frustrated as the reading on the tests increased and they expected me to complete them in less time.  My head would start to hurt and my eyes would get blurry.  On the timed math tests, I would mix up the numbers and 18 became 81.  I tried to use the tricks my grandma taught me to keep the numbers right, but I just couldn’t do it fast enough. I would complain so I got Tylenol from the office and my mom took me to get my eyes checked. My vision was fine.  

My mom went to the school and asked that I be tested.  There was hesitation as they saw me as a bright happy little girl, but my mom knew enough to press on.  Honestly, I thought these tests were fun. Matching blocks to shapes, putting things in order, predicting what this would look like from a different angle.  They found that I struggled the most when I knew I was being timed, so they concluded that I had test anxiety and I was no longer scoring on timed tests.  I could take as long of the science tests as I liked, even if it meant not going out to recess to finish.  My grades jumped up and I was happy again. Well, happier than I was.

Spelling continued to be an issue for me and I still occasionally transposed numbers, especially when I had to copy them from the board or from a book.  I started finding strategies to help, at least some of the time.  Computers were becoming a little more common and my family had one at home. When allowed, I would type my reports on the computer and use spell check. My mom would help check my papers, but admittedly I didn’t like corrections so these were times of great tension.  My mom would also help me by copying my math problems onto a piece of paper to “save me time on my homework” so the problems had fewer transposed numbers and I was more accurate in solving them. In class, I would go over things number by number, word by word to make sure I didn’t miss things - I still did, but it was less often than it could have been. I still read really slowly. That never seemed to change.

I thought all of this was normal. Surely everyone did all of this. Surely everyone was mentally exhausted at the end of the school day.

My reprieve was my busy schedule after school.  I took ballet three days a week. I loved it though it was physically exhausting. My teacher repeatedly has to tell me “your other left foot” but otherwise it seemed like a blissful vacation from the mental workout of school. Soccer was another escape; run and kick hard and get all the pent up energy out. Mid-week bible study was a bit more intellectual, but I excelled in memorizing and reading wasn’t a huge component.  I lived for after school busyness. Especially the one year I was convinced my teacher was an evil witch out to ruin me.

This continued through middle school and high school. I had managed to be an A/B student with an occasional C. All through school, try as I might, if I worked hard to raise one grade, another one would slip. In the back of my head I thought I must be lazy, I just need to try harder; or worse, maybe I’m just not smart enough.  

My last semester before high school graduation, I had Advanced Literature. I didn’t hate reading, and I had the same teacher the previous semester for Advanced Grammar and had done well.  In this class, every two weeks we had to read a novel and then take a test on it. We chose the novels from a list and read on our own outside of class.  Determined, I read every chance I had. I read in the mornings before school; I read between classes; I read at lunch; I read as soon as I got home taking a break for dinner and other homework, then I read some more.  I didn’t complete a single book. The day before the test, I would jump to the last chapter and read it; if I had time, I would then read the chapter before it. When I sat down to take the test, I had read enough to fill in any blanks and make any connections that I aced each test.  My friends (and boyfriend at the time) marveled that I could not finish a book and still get a perfect score, but I felt like I cheated. My mom seemed to be the only one to recognise how truly frustrated I was. When I go off to college, how was I going to manage the increased reading load?

It was my mom who suggested that I go to student services as soon as I got to the university. The first week of classes, I found student services and made an appointment with the head of the department. After a brief interview and filling out a questionnaire, he helped make an appointment with the state department of disabilities on the other side of town (it was a very small town) to be evaluated.  A few months into the semester, I had a diagnosis and qualified for accommodations for dyslexia.  Primarily, I was allowed up to time-and half for all examinations/tests.  I was also given access to a technology room in the library. Text-to-speech was still very new at the time, but this university had one scanner and computer that could scan and read my textbooks to me. Unfortunately, it was cumbersome and time consuming. I didn’t use it as much as I should have. I was just glad to have affirmation that I wasn’t lazy, I wasn’t stupid, and I wasn’t broken. There was just something that made me different.

After a couple years, I transferred to another University (the reason is a whole different story). Student services at this new school didn’t have the computer with text to speech, instead they employed several students who recorded themselves reading textbooks and assigned reading on to audio tape.  This was a little more convenient as I could take the tapes home to listen, but finding the right tape, right side, and right section of the tape was sometimes too confusing and frustrating in itself.  I was still allotted extra time for tests and most professors didn’t mind providing me with the accommodations. The one exception was the professor who taught an Education course on teaching reading skills.  Before the first class, I walked up to him with the University letter stating my accommodations and the materials (the syllabus including exam dates and book list) and handed it to him. He pursed his lips and said, “I will ofc ourse give these to you as I’m required to; but may I ask what your disability is?” I had never been asked that before and I didn’t have any shame in sharing it with him. I mean, he was a professor of education. Surely he would understand. “You know,” he responded, “dyslexia isn’t a real thing. And if it were, the only true way to tell if you have it would be to dissect your brain and I don’t think you are ready for that, are you? Any student with a decent teacher can learn to read.”  I was so taken back that I didn’t know how to respond! I completed that class with an A, but I can honestly say I don’t remember anything else he ever said or what we did in class.

I graduated with a respectable GPA with a degree in Elementary Education and started teaching the next year in a small 4th grade classroom. I may not have been the best teacher, but I was enthusiastic, eager to learn, and I loved my students.  

The next year, however, I found myself at home starting a family. Fast forward a few years, four kids, and multiple cross-country moves, an international move and I was now homeschooling my own kiddos.  We had chosen a literature rich curriculum and my oldest three children had learned to read rather easily. I would read multiple books to them throughout the day, and by the end of the day my head would hurt and I was mentally exhausted.  Still, I loved it for the most part.  That’s when I learned about Audible on my Kindle.  I started purchasing the chapter books I was reading to my kids and letting them listen to them. I still read science and history, but I could relax and enjoy novels with them instead of wearing my brain out.  My oldest loved to read and read along with the audio as well as devour just about any other book.

My second had a hyper-fixation and couldn’t pass any printed word without stopping to read it but hated audios and found them too slow and distracting. They opted to read books to themselves instead and read dictionaries for fun. My third could read just about anything but would much rather climb a tree or hang upside down than to stop and read a book. She only read what was required for school. Then there was my fourth. He learned his letters; he learned their sounds; he could string cvc words together, but that is where he stopped. Sight words came and went, he just couldn’t hold on to them in his head. He would get headaches when we worked on reading.  Instead he wanted to play with numbers and blocks.  When he was 4 years old, he found my base ten blocks and I showed him how place values could build big numbers up to 4 digits. He spent several minutes adding and subtracting blocks to make and read new numbers. He was amazing. When we were done I smiled and said, “I think that can count for your math for today.” He looked at me sternly and said, “No, that wasn’t school. That was playing.”  A couple years later (the beginning of first grade), he was wiggling during a reading lesson and he paused to tell me, “Twelve is made of four threes. I know this because six and six is twelve and each six has two threes.” Great! Math isn’t an issue, but reading is going nowhere.  This is when I really started to suspect something was up, and I started researching dyslexia more.  

The more I found, the more I understood signs in him, but also signs that were there in my past.  I learned about the Orton-Gillingham method of teaching reading and I wanted to get trained - but it was more expensive than we could afford at the time.  At the end of his first grade year, it was time for our annual standardized testing. As in years before, my mom, a certified teacher, agreed to test him and his siblings.  After finishing, she came to me with her concerns. He had done well on the test except reading and spelling. For those two subtests, he sadly put his head down and said, “I can’t do it” and refused to even attempt any answers.  At this point, I knew I had to do something. I emailed the school district and asked what the procedure was to have him tested.  Within 24 hours of sending that email, I had a meeting scheduled at the school.  I prepared the test scores, I wrote up notes about my observations, work samples, all the information on him that I could find. I wasn’t sure what to expect at the meeting, but after going over all the information, it was the school psychologist who first leaned back and said, “Well, I think it is obvious that this is a very bright boy with definite strengths and weaknesses, and he seems to have a qualified and dedicated teacher, so my vote is to move ahead with testing.”  Though the school couldn’t diagnose anything, they could and did find him eligible for services based on patterns demonstrated in his testing.  

Two years after this, I was working on my Masters in Special Education and started as a Special Education Resource Teacher. I read many more books on dyslexia and learning disabilities beyond the required reading with a particular interest in accommodations and focused instruction. I jumped at the opportunity to attend training for Orton-Gillingham (OG) when it came up.  I sat in that conference hall just aghast.  Suddenly spelling made sense! Syllabication, or what my teachers called chunking, made sense!  There were rules that I could follow; there were patterns I hadn’t been taught! Why hadn’t I been taught this?

Basic Reading Skills and Vocabulary became my favorite things to teach. I still enjoyed math and other subjects, but it was like I had discovered a key that opened a dirty frosted door that, until now, I was only vaguely aware of what lies beyond it. 

I still enjoy learning more about neurodiversity and how we all learn differently. I still use text to speech and audio books to read lengthy items. I still have mini panic attacks at the store when I have to read the credit card reader for directions. I still use spell check on the computer, though not quite as often.  My brain may not work just like everyone else’s brain. Isn’t that what makes us each great?  It’s our struggles that help us learn who we are, and the way we adapt is how we find our place in this beautiful world. I am still learning, but I want to celebrate who I am, how I see the world and how I can use that to help others along the way.  That is my purpose.

My story is not over; this is just where I am right now.