While this organization has been forming in my heart and my mind for quite some time, I never dreamed I would leave the cozy, safe comfort of inaction and propel myself headlong into such an endeavor. Had I dreamed? Absolutely. A romantic fantasy of a former social worker seeking a meaningful way to make a difference. Yet I was a prisoner of fear for many, many years.
Let me tell you my story. The condensed version. I promise. I am a reformed grammar nazi. A self-titled spelling snob. After all, how could one sit through at least 13 years of schooling and not know the difference between 'they're', 'there', and 'their'? It's really not. that. hard. Then life blessed me with children. My first child was a girl. Both loquacious and precocious, she defied normal child development with 5-10 word sentences before she was 2. Her pediatrician didn't believe me, having then given me an admonishment for exaggerating my child's abilities as "parents always think their children are more advanced than they are", when my daughter blurted out some long-forgotten sentence that left her doctor with her mouth agape. She was reading words like "prosecuted" by the time she was 4. Once again, I behaved with an air of superiority as my child was flourishing academically and excelling in school.
When she was 4 years old, I gave birth to my second child and my first son, Aidan. In stark contrast to his sister, Aidan did not develop rapidly, meeting developmental milestones at the latter edge of normal, or even outside what was considered 'normal'. Aidan barely spoke 2 words by the time he was 2. Again, his pediatrician offered sage advice "He's a boy. You cannot compare him to his sister, as she was not a typical child." Yet I knew there was something wrong. Despite their discouragement, I sought an evaluation through early intervention. Two actually. Both evaluators told me that Aidan had nothing wrong and he did not qualify for services. As Aidan grew, we speculated the root causes of a multitude of behaviors that concerned us. Why didn't Aidan respond until we yelled at the top of our voices? Could he hear? Why didn't he recite his alphabet? Why did Aidan tantrum every time we tried to engage him in an educational activity? If his speech is normal, why can most people not understand him? Why do we have such a hard time understanding him? This type of questioning continued for many years. We enrolled him in preschool and after 3 years, Aidan could not recite the alphabet, count higher than 10, skip count, or even write his name without help.
Flash forward 3 more years and several rounds of evaluations, several IEP's, and low and behold we learn that we have a child with dyslexia. Now mind you, the school didn't tell me this. At the time I worked at the school as a TSS and the school psychologist would feed me the results of the evaluation as she completed them. Being a studious person, adept at research, I quickly learned my child was dyslexic, dysgraphic, and dyscalculic. The school psychologist asked "Where did you hear those terms? Those terms are only ever used in textbooks." I will never forget those words or what I said next. I asked if the interventions for dyslexia differed from the interventions given to a child with a specific learning disability and she said NO! Now many of you know that is not necessarily true. Interventions schools offer for kids with a specific learning disability in reading are not necessarily the best practice interventions for a student with dyslexia. After this school evaluation, we won the right to an Independent Educational Evaluation (IEE). The neuropsychologist who evaluated him told us what I had known and desperately wanted confirmation of Aidan is dyslexic.
From that moment, sordid tales I could recount of embattled IEP meetings, woefully ignorant teachers, well-intentioned ones as well, that have left a path of failure, frustration, and heartbreak in its wake. I will not tell those stories here. Not today. Perhaps not ever. For see, each one of you that have come to read this has your own version of my story. Of my frustrations. My angst. My despair. And I hope that each of you has an equal, if not a greater amount, of stories of hope, anecdotes of pride and of success.
What I cannot omit is my transformation. When I realized how hard it was for my child to understand the difference between homonyms, I began to look back at the judgments I had passed on a variety of people in my life. I began to stand against those seeking to shame others for their lack of mastery of one of the world's most complex languages. I was more forgiving of my children when they struggled with the concepts that had come naturally to me. And I found my voice in advocacy for children like Aidan, who were continually being failed by school systems around the country. Today, I work to use that voice to make a difference and transform the lives of children with reading disabilities, like dyslexia.