Our Journey

October is one of my favorite months. The pumpkins on my porch, the golden yellow, crisp leaves falling from the trees. The mountains are so fiercely red that they appear to be on fire, especially in the evening sun. The days are still warm, but carry a hint of coolness on the breeze and the nights become chilly as it gets darker earlier and earlier. But October has become a different kind of special to me. It's also Dyslexia Awareness Month. And this is our story.

My son, my beautiful and wonderful son, and I have been on a journey I never could have imagined. The terrain is rough, some days impossible. There are steep cliffs that have to be traversed. But even the smallest victories are sweet, and they sustain us, keeping us going and giving us the strength to scale the next mountain. It has all been uncharted for us, and it is my heart and my determination that fuels my fire and lets me push on, even in the darkest of times.

Other mothers out there will understand when I say that I knew, from so early on, that something was different. It was in my gut. And I have no way to describe it other than that. C exhibited the first signs of his dyslexia very early on when he began to learn his alphabet. It was a struggle- letter identification and the sounds each one made. I asked his teacher about it way back in preschool. But she dismissed my concerns and told me that every child learns at their own pace. And yes, that's very true. But I knew something was different. In kindergarten he showed some improvement, but not nearly at the same pace as his classmates. But I was encouraged to keep reading to him. To keep having him read to me.

First grade brought a whole new kind of struggle into our lives with his academics. And his reading scores continued to drop- lower and lower, despite all of our efforts at home: zeno word flashcards, CVC repetition, and my favorite... "he just needs to read more." That spring, as we approached the end of the year, I attended a workshop for parents of struggling readers. And that was the first time the word dyslexia was used to explain my son's struggles. I was certain that wasn't the case. The school kept telling me that it would click for him. My understanding of dyslexia was very limited, and very inaccurate. I thought it was reading letters backwards. I was so wrong.

Second grade I decided to be preemptive. I approached his teacher at the very beginning of the year, trying to establish a plan to give him extra support. She was wonderfully helpful, so eager to accommodate and give him any extra support she could. But there was very minimal progress. His class moved forward and he fell further behind. By the middle of second term it was recommended to me to find outside support. He needed an intervention that his teacher could not provide. So that's what we did. And after a few evaluations, and some time spent with his new learning center, the word dyslexia came up again. It had been lingering in the back of my mind since that workshop but I had continued to wrestle with it, trying to disprove the possibility. The director at the learning center said C met all the criteria for dyslexia.

I went to the school in search of support but received a "refusal of proposed action." I was told that he was "below benchmark range, but not well below benchmark range... [he] will likely benefit from strategic support and intervention from the classroom." But we had tried that. And it wasn't working. I was beginning to watch his rapid decline, feeling powerless to stop it, and I felt abandoned by his school's administration. I was told to take him to his pediatrician for the suspected dyslexia because it was a medical condition. The doctor told me it was a learning condition and sent me back to the school. My head was spinning in confusion. Why was I the only one who wanted to help him?

I ended up finding a psychologist who gave me some direction. Finally. She wouldn't be able to test C for months because of her patient load. But, the school was legally obligated to conduct the testing if I requested it in writing. So I went back to the school with my request. I sat down with the vice principal who put a document in front of me. It was so technical in nature and I had no idea what I was actually looking for, so I relied on her recommendations and trusted her when she told us what to accept and what to decline. He was denied a second time. I was devastated. And I felt stuck. Unsure where to turn next. I was adamant with the school about how low his test scores were, but they just told me, over and over again that they weren't low enough. They needed him to completely fail before they would intervene. Why couldn't they see that I was trying to prevent that? 74% of students not reading on grade level by the end of third grade will not be on grade level by tenth grade. And students who cannot read on grade level by 3rd grade are 4x more likely to not graduate high school by age 19. We were approaching the end of second grade, and statistics showed I was up against the clock; I was running out of time.

The independent psychologist grossly disagreed with the school's interpretation of C's test results. But the school stood firmly in their rejection. Another hit that we took at the time was the denial of our health insurance to cover any of our sessions with and testing by the psychologist. The ADA (American Disabilities Act) includes dyslexia as a disability because it meets the criteria of limiting major life activities (reading and writing). But health insurance defines it as a learning disability rather than a mental or physical disability. However, dyslexia is widely regarded as a neurobiological genetic disorder.

After so many hits- from the school, from the insurance- I was getting mad. And anger is a very driving force for me. And when C started third grade, I was determined to get him the help that he needed. His teacher was amazing. And supportive. And she appealed to the school but they once again rejected our request for testing. Although they had the capability of testing early, they were not required by law to test again within a 365 day window. And that's when I learned that the very tests I declined, based on our school's recommendation, were the ones that would have been most crucial in identifying his deficiency. So I set out on a mission- I learned everything I could about dyslexia, how it works, what kinds of remediation are effective, and what his legal rights were. I studied the fine print of the school's procedural safeguards manual, I learned about the IDEA act, and FAPE. I studied, federal senate bills for the department of education on the national level, I studied house bills for our state board of education, and I studied the testing options out there... and I found one that we neither accepted, nor rejected, and I went to the school demanding that he be tested with the GORT (Gray Oral Reading Test). They were legally obligated to test him. They were very curious about how I knew of the test, and of the laws that required them to follow through with it. I just smiled at them. I was going to hold them accountable. And my ignorance wasn't going to be their advantage anymore. They tested him. And he failed miserably. And that qualified him for an IEP. It was a true victory.

Although C still doesn't have a clinical diagnosis (which requires extensive independent testing with a very heavy price tag), he was able to qualify under the SLD (specific learning disability) category of the IDEA act (Individuals with Disabilities Education Act) because his academic performance was adversely affected in reading and writing. A student who qualifies for assistance under IDEA is entitled to a free and appropriate public education (FAPE).

Our state has little in place to support dyslexia in our schools. There is both a lack of awareness and education to be effective with remediation. In fact, most states have little, if nothing in place. Yale University research shows that approximately 1 in 5 people struggle with reading. And it is estimated that nearly 15- 20% of the global population falls somewhere on the dyslexia spectrum. Yes, there are varying degrees. It is not a disease. And there is no cure. But proper remediation can help give those with dyslexia tools to be successful. Most children are not diagnosed before age 7, but research shows that intervention as early as 3 years old can make a difference. Dyslexia is not simply reading letters backwards. It is a struggle with word decoding, phonological and phonemic awareness, and reading fluency. It affects reading and writing, and often impacts comprehension. It is not a result of a low IQ; it is a physiological characteristic. In fact, many people with dyslexia exhibit an above-average IQ.

As we approach our annual IEP meeting, I am prepared to come in hard. I'm no longer afraid to ask the hard questions, and demand answers to them. I have learned the hard way what it takes to be an advocate. And I fight fearlessly for my son. My mission is to make sure he has the opportunity to access the same level of content that his classmates are learning to master rather than having the standards of performance or content altered to cater to his level of deficiency. Our journey is definitely on-going, and some day he will take charge of it for himself. I want him to grow up with the same opportunities as other children. And one day I hope he can look back and say, "my mom was my warrior."


*Sources for statistics used in this post:
Understood
International Dyslexia Association (IDA)
Edweek
US Dept. of Education