One Year Later: what our journey with dyslexia looks like today

It's October, which means it is Dyslexia Awareness Month!

Last year I shared our story with dyslexia - mine and my son's. No, I am not dyslexic, but my son is, and together we have been on both a rocky and rewarding journey. I tell our story to promote awareness, understanding, and acceptance. I tell it to promote change in our education system.

Over the years I have encountered the many misunderstandings and myths of dyslexia. So first, let's get clear on what dyslexia is and what it is not.

Dyslexia is a physiological characteristic relating to brain function that affects decoding, phonological and phonemic awareness, as well as reading fluency. It often impacts reading, comprehension, spelling, and writing. It is not a disease.

Statistics show that 15-20% of the global population falls on the dyslexia spectrum. Yes, it is global (encompassing all languages) and yes, there is a spectrum. No two cases are alike and characteristics of dyslexia range in severity from moderate to severe. It is also important to note that it is estimated that 1 in 5 Americans struggles with reading.

Not all struggling readers are dyslexic, and not all dyslexics struggle to read. Yes, you read that correctly. With early intervention and appropriate remediation, dyslexic readers are able to learn to read, they just do so with a different approach and technique than mainstream learners.

Dyslexia is not a result of:
1) poor diet
2) poor parenting
3) poor schooling
4) low IQ

Our journey is a long one. I suspected early on with my C that something was different when it came to reading, although at that time it was just his alphabet because that was how early on I picked up on this. My concerns were dismissed frequently when he was young. I was told that all children learn at different paces and that he would get there. But in my gut, I knew something was different. I had no empirical data or even a clear understanding of what it was, but deep inside my mom-tuition told me something was up.

Over the years I met great resistance from our school's administration, doctors, and insurance companies. Let me be very clear, C always had wonderful teachers, and they all did everything they could to help and support him. But he needed more than he was getting. His teachers had 60 children... there was only so much they could provide one-on-one for him.

The first time the word dyslexia was put out there for me, I thought it was a preposterous idea. But only because I had such a limited knowledge and understanding of what it was and what it looked like. I had simply thought that dyslexia was reading letters backward. Wrong.

These were some of the signs C exhibited:
- Trouble learning to recognize letters and remembering sounds they made
- Difficulty with the concept of rhyming
- Confused letters that looked similar (b/d, p/q) - although it is important to note that many children can mix these up as early readers/writers as late as 3rd grade.
- Confused letters with similar sounds (d/t, b/p, f/v)
- Struggled with decoding basic word structure such as CVC words (cat, dog, sat, car, bat, etc)
- Difficulty learning his Zeno words
- Trouble identifying individual sounds in words and blending sounds to formulate a word
- Trouble identifying reading patterns within words (CVC, CVCe, "two vowels go walking", er, ir, ur, ou, gh, wh combinations)
- Difficulty remembering how words are spelled and applying spelling rules
- Skipping over small words in a text (of, the, a, to, for, at, etc)
- Struggled to read a word he had just read in a previous sentence
- Throwing out completely random words than what is in the text, some beginning with the same letters or having the same ending, but weren't even in the ballpark with the actual word
- Poor spelling (and handwriting)
- Struggled to identify and process punctuation in a text (such as commas or periods and contractions)

Like I said, I met a lot of resistance from the school's administration. I had very naively believed that C's education would be a priority to them. Blindly trusting them bit me in the butt. Hard. I probably still have those bite marks. Once I realized I wasn't going to get what I needed from them to help him I had to get creative. I reached out to so many people who worked in the public education system, many of them out of state. I learned that while things like the Free and Appropriate Public Education act (FAPE) and the Individuals with Disabilities Education Act (IDEA) were regulated federally, the programs that were actually in our schools varied from school to school, district to district, and state to state. I had to learn what C's rights were when it came to his education. I studied our Board of Education Special Education Rights of Parents and Children Procedural Safeguards Notice (that was a mouthful!). I studied federal and local bills in regard to special education. I consulted doctors and psychologists. And I read everything I could get my hands on. I was able to find a loophole in the very broken system of special education in our public schools and in the end that is what qualified C for the IEP he so desperately needed - over two years after I really first pushed the issue, and over five years after I saw the first red flags.

For our full story, you can read last year's post here.

I'm not proclaiming to be some hero. And I certainly don't know everything! But I did go out there and fight with everything I had to advocate for my child. And it has made a world of a difference.

Today, C reads. Not flawlessly and not on grade-level, but he reads. He gets great grades in school. We've found books that he's both able to read independently and loves to read. Yes... loves to read. His IEP allows for support and accommodations in his daily education program and he attends Resource four times a week. He also attends a private special education center for his dyslexia after school. If someone would've told me two years ago that we would someday be where we are today, I would've told them to shut the front door! Sometimes it feels surreal that we are where we are. But then I pinch myself and realize I'm not dreaming.

C excels in math and science. He has a very engineer-oriented brain like his dad. Although a recent development is that he also has a love of writing. Be still my heart. He has turned in to quite the storyteller and fills a notebook with those stories. He's also a dual-language learner. He's considered an intermediate language speaker in Chinese (mandarin). And he is a piano player- he reads sheet music so well.

C is one of the hardest workers I know. And despite his hurdles, he still gets up each day, and he shows up each day. I'm always told that his eagerness to learn and positive attitude set him apart from so many. He doesn't let his dyslexia hold him back from anything and he doesn't take for granted the additional support he gets. I believe that my husband and I are instilling in him, and his sister, what education can do for us, where it can take us. I see the conviction in his eyes when he tells me what he wants to be when he grows up and that he can actually be it.

Our journey is far from over. C will always be dyslexic, but my goal, my intention, is to give him every tool I possibly can so that he can go out into this world and make a difference...so that he can go out into this world and be proud to be himself.