The Dyslexia Initiative
The Cost of Refusing to Diagnose Dyslexia
by Lauren Taylor
Where does a mother start when asked to speak on the emotional roller-coaster known as raising a child diagnosed with Dyslexia. We could begin with when our story started. Our story started with our son was only three years old. There was and is a federal program responsible for identifying children at a young age that I’d hoped I wouldn’t have to look into. I was familiar with this program for all the reasons that parents hope they don’t find themselves becoming familiar with. The words Special Education are polarizing to almost every parent. I’ll go ahead and admit that I too was afraid of this label being attached to our son. However, that was a fleeting moment in time as I was already very familiar with it prior to even having a child.
Dyslexia is hereditary. In my family we’ve been able to trace that back to family members in their 80’s. That is a part of our story that I wasn’t even made aware of until two years ago. I have an aunt whom always hovered over my baby sister. It did not matter what I did or didn’t do, the attention always went towards my baby sister. Even as adults, the same was afforded to her over me. I always assumed that was due to my inability to not call a spade a spade. My aunt didn’t care to have a dose of her own medicine, and I was always the child that made it known you weren’t going to talk to me or anyone close to me a certain way. So, when my aunt started hovering over our son, I was even more intrigued. What was the connection? This would later turn out to be a red flag I should have picked up on due to my involvement advocating for my child and so many other children diagnosed with Dyslexia. My aunt’s success in life did not come without torture and negligence at every single level.
My mother begged her sister to move to Atlanta in order to make her life easier. We’d only just moved here ourselves. My mother saw a chance at a new life for her sister outside of the small town they’d grown up in. She (my aunt) arrived here with nothing. During this time, she taught herself how to read, write and spell out of pure tenacity and stubbornness. Why is this important when it comes to emotions? Well there has always been some myth around children learning to do all of the above by simply listening or being read to by their parents at an early age. While I believe that’s true as it pertains to their vocabulary, I know it NOT to be true when it comes to my son and everyone else in my family that’s Dyslexic. Reading has been embedded and encouraged in our family for far longer than I’ve been around. My grandfather demanded his children read. This wasn’t up for negotiation in my mother’s household. At a time when women were still expected to become housewives, my grandfather demanded more out of his 12 children. He didn’t care if you were a boy or a girl. You were going to continue learning outside of school. Imagine not being able to do the things your father was expecting from you as he expected it from his other children. This would set the stage for my aunts fractured relationship with nearly all of her siblings, and her nonexistent relationship with her parents. It took 39 years for me to understand where the anger and hostility derived from when it came to my aunt’s everything. I now understood why she hovered over my sister as well as my son.
My son was diagnosed with a speech/language disorder at the age of three years old. I was hyper aware of this due to watching the very same events take place with my sister. I was always bombarding a family member with questions because she’s an SLP. I would always ask her questions that she probably found highly annoying, luckily, she humored me and gave me information no one else would.
My son’s random pediatrician at the time along with his pediatric ENT (who my son saw once a month) were never able to answer the onslaught of questions I hurled in their direction. Our ENT was actually offended when an SLP suggested that my son have his tonsils and adenoids removed. His exact words to me were “I’m the doctor so I’ll do the diagnosing when it comes to what surgeries your child needs, please let your sons SLP know I said that” My sons SLP suggested this course of action because she said our son was what they referred to as a “mouth breather” Imagine how well that went over with me. She further explained to me that because my sons’ tongue did not fit inside of his mouth, he’d never be able to articulate his words properly. His adenoids were extremely large, but we’d been assured they wouldn’t be an issue. It would later turn out that our son suffered needlessly for years due to this misinformation. My son also had a significant tongue tie in which I’d attempted to have taken care of by a dentist at an early age. They dismissed my concerns due to his ability to eat from a bottle. So, by three years old we’d already had our son sedated twice for surgeries in hopes of correcting his never-ending battle with ear infections. While he was under the second time, I made sure to remind his ENT to clip his tongue tie. Upon returning our son to us the ENT that had known our son since the age of 18 months old made the comment “good job on the tongue tie mom, he had a significant one that we would have never caught had you not reminded me to clip it” Not only had this inattention to ongoing medical issues significantly harmed our sons ability to hear and speak properly, but he’d later earn the diagnosis of Auditory Processing Disorder. In the most important years of a child’s life our son heard everything as if his head were inside a fishbowl.
I want to make myself clear here. I’m giving you, the reader, a road map of what to watch for in the event you run into the very same conversations with your own children.
This brings us to somewhere around PreK. We had to make the decision to hold our son back in PreK due to him being a “summer baby”. Our son had always thrived off of being around older children. He was never in the same class with children his own age or younger. He was always placed with children who were the same age he was about to be. When we held him back you could see his behavior begin to spiral. This solidified the heartbreak with the decision we’d made. We were told again and again that our child had ADHD. The reason behind his behavior was always the same thing. I had owners of extremely expensive childcare centers pull me into their offices and discuss my son’s behavior before he’d even stepped foot into a formal classroom setting. The articles I’d read about the over medicating of little boys was literally taking place in these conversations. I could not understand why this was the ONLY conversation afforded to myself and my husband. Even with an IEP on file for my son’s language disorder, they still insisted that we have him checked out. While yes, my child has ADHD, we’d later find out this was not the reason for his behavior. My son had been placed on a behavior chart at the age of four years old. Meaning, he’d started to base his self-worth off of what color apple he landed on for the day. Our son was also displaying triggers for his now diagnosed crippling anxiety and panic attacks at the age of four years old.
During the battle known as PreK, in steps the most amazing woman who we’d only met one time before. See, she had evaluated my son at three years old. She was an SLP by profession, but she was also the head of Special Education in the district where my child attended PreK. When my child received his IEP she had informed me the only reason she was even granting him this gift (let’s be honest it is a gift if you’ve ever had to fight for services) was due to what she knew would take place once he started school. This took me off guard but yet again intrigued me. She informed me that our son had the vocabulary of a seven to eight-year-old, which would typically be an automatic hard pass for an IEP. She informed me after his evaluation that her son was not afforded the same at my sons age. Had her son been afforded an IEP at my sons age maybe she wouldn’t have had to take the extreme measures she did. She informed me that my son reminded her of what her son presented with before they made the decision to place him in private school. She never gave me a diagnosis. She never told me why her son was placed in private. She just warned me that I was going to have a brutal fight on my hands. She became our only ally in PreK. This was a year that was meant to be spent placing cotton balls on construction paper to make a snowman, so I thought. This lets you know just how naïve I was regarding public education. During a parent teacher conference, she showed up out of nowhere. We had only informed her of the push back we’d been receiving. She’d already told me her schedule was full otherwise she’d be there in person. Imagine our shock when she was inside the room upon our arrival. She was not having anything to do with the sidebar conversations regarding our child’s “behaviors” that she’d physically witnessed herself. We didn’t know that she’d been observing our son. As previously mentioned, our son by the age of four had already started focusing all of his energy on what color Apple he landed on for the day. We found out in this meeting that he’d asked her one day “does it mean I’m always going to be a bad boy since I cannot get a green apple?” This SLP went to war for our son. My husband got so infuriated by his teacher’s behavior he finally spoke up. When my husband speaks up, something has gone sideways. He made a simple statement that was long lasting for the rest of that year. “Let’s focus on the good behavior and point out the positive instead of spending all your time punishing him for mistakes. He’s a five year old child.”
This all could have been avoided. See, I was the neurotypical child in our family. I was afforded every luxury that public school could offer. I was never made fun of or teased for things I had no control over. I had never been told that my sister had NOT been afforded the same. I knew teachers weren’t nice to her. I knew my mother constantly waged wars with our schools and the principals. I knew my sister spent a lot of time being evaluated by doctors at Scottish Rite. I was never told the why to any of this until much later in life. I remember that my sister was dealt with blow after blow from children that didn’t understand her. Literally, they didn’t understand her due to her speech/language disorder. So, while I was afforded normalcy, I was also very familiar with the pain and anguish my parents and baby sister dealt with. This is where almost all the emotions come from in regard to my son.
I did NOT want history repeating itself with my own child. I’d almost lost my baby sister at the age of 12. As I’ve said before, that is her story to tell, I was just a bystander. I was however the one that found her and made the panicked phone call to our mother. I couldn’t grasp what had just happened or why at that time. I just knew I had to keep her awake until they could get her to the hospital. She didn’t arrive home until I had to go to school the next day. Wrap your brain around that for a second. I WENT TO SCHOOL the day after I’d watched my baby sister attempt to take her life. Nothing about that is normal. Whenever I bring this up, I always have to let others know that my parents were not trying to further harm my mental health. They were trying to protect my sisters everything. She did not know any other version of life except the one where she’d spent all her energy attempting to hide her pain. By the age of 12 an entire system had finally managed to break her. Her peers had no idea what she’d been through. I didn’t even know all she’d been through and I was with her every single day.
Our son has always been identical to my sister. From their speech/language disorder to their academic profile. My sister could look at a math problem and figure it out without having to put any work into it. She’d get irritated if she was forced to work the problem out. To paraphrase my sister’s defiance towards this remedial task “I shouldn’t have to explain how I was able to answer this. That’s their job. They are the teacher” Such was the life of public school for my sister her entire life. This was also the same behavior that almost led her to being placed in a self-contained classroom. Teachers were convinced my sister was being defiant on purpose and that she couldn’t be taught due to her refusal to do it the way they wanted. It would turn out that my sisters IQ was and still is in the genius realm and she was extremely annoyed and bored. She found it entertaining to make some of her teachers miserable. I mean they called her some pretty atrocious things and hurled insults her way on a daily basis. This was just her way of leveling the playing field. My son is the exact same way. My son will sit there and grill his teachers over current events and question their everything. He wants to know the WHY to everything and he expects those older than him and in charge of his education to deliver. If they don’t know how to reply or won’t reply, he then takes it a step further where he’ll educate the entire class on the WHY. He already knows the answer to every question he throws at adults and children. He just wants to see how they react. This was playing out as early as Kindergarten.
Kindergarten started with an IEP where my son was identified with “phonological processing deficits” and “written expression” weaknesses out the gate. Talk about mama gut. I informed his teacher in August of that year that I truly believed our son had Dyslexia. I informed her Dyslexia was hereditary and my sister was Dyslexic. She looked at me as if I were insane because I then informed her that I had no less than eight cousins whom were also Dyslexic. My family was and always had been a road-map of how hereditary Dyslexia truly is. Our son wasn’t trying to misbehave. He was trying to let her know he didn’t understand what she was trying to teach him. During this triennial/eligibility meeting in September the powers that be decided they’d keep my child on IEP, but only afford him 30 minutes of speech therapy once a week. Never mind that he was throwing off the red flags for Dyslexia and Dysgraphia, they wanted to throw him into RTI purgatory.
The school year went on, meetings and parent teacher conferences were held. There was no progress being made. I remember telling them in October of that year if my son had not made any progress inside RTI, I wanted them to evaluate him in April for Dyslexia. They obliged and even placed that inside the meeting notes. I’d already gone past the point of being the naïve mom that just accepted what I was told. I knew where this was headed. I’d been warned years prior. I had a road-map to what I was walking into thanks to my mother doing the same for my sister. Once April rolled around and no progress had been made, I decided to take matters into my own hands. I demanded the parental consent to evaluate. I wanted my child identified properly and afforded the education he needed to succeed. I knew these were federal laws they were tinkering with. I knew the severity of what they were attempting to brush off. My son wasn’t afforded this evaluation until September of the following school year. He started first grade reading at a level you’d normally see in PreK. He couldn’t write his name, he couldn’t read his name, and he couldn’t tell you his ABC’s if they weren’t in order. Yet, his first-grade teacher expected ALL of this and then some. I had his diagnosis from school by late September of that year. As did his teacher. As did the school. Yet, we didn’t have this formal meeting afforded to us until November of first grade.
By the time we got to the table the damage had been done. My son had been beaten down so badly he was no longer my little boy. I didn’t recognize this child. He wasn’t curious about school anymore. He’d stopped asking why to the ways the world worked. He was now asking why his teacher hated him. Why did his teacher not understand that he didn’t understand what she was asking him to do? I spent first grade dealing with complete defiance and negligent behavior hurled towards my baby. My child was arriving home catatonic, with bloody lips and fingernails. I wasn’t able to protect him while he was at school. All she cared about was his behavior in class. Unfortunately, they don’t educate incoming teachers about behaviors attached to learning disabilities. Nor do they educate them on gaslighting children which lead to these behaviors.
All of this was playing out on my Facebook by the way. Everything our child and I were dealing with was on display. By early May a dear friend of mine had finally had enough. Once he realized my son was in a co-taught setting and had a teacher actively refusing to implement my sons IEP, he called in back up for me. My childhood friend turned out to be high up in the world of Special Education. He’d also helped draft laws for IDEA one summer. We didn’t realize what he was doing. We didn’t know what IDEA was. Regardless, him being a dyslexic himself, he knew it was time to step in. From there I was afforded the most amazing mentor and advocate. She laid the groundwork to learn everything I now know. She demanded that I watch and learn then pay it forward when the time came. That time did come.
That time has afforded me access to far too much pain. Pain in the form of watching an entire system attempt to break my child. A system that repeatedly retaliated against my son because they didn’t like how vocal I was. A system I was determined to burn to the ground in order to fix. There is no way to fix a system that’s grown complacent in their ways. They prefer to push parents to the brink of literal insanity in lieu of doing what they are legally instructed to do. They would rather us spend our money in private school vs our own communities. They do not want our children. They do not want the parents attached to Dyslexic children. We tend to be the most vocal parents they are met with these days. We may as well become lawyers with the amount of time we spend educating ourselves on federal laws, state laws, and civil rights laws that our children and even us as parents aren’t afforded.
The mental health statistics that come along with our children cost school districts more than they are willing to spend. However, the mental health statistics would be more affordable if public schools were willing to acknowledge their defiance and complicit behavior towards failing our children. Imagine a supportive environment where our children were afforded FAPE. Imagine clinical psychologists on staff to work with our children on their lack of self-esteem. Imagine counselors being afforded to our children whenever they needed them. These are all very attainable and tangible. They are not things out of fairy tales. However, you’ll be hard pressed to find a public-school system that willingly hands them over to your child without a fight.
I was asked to write about the emotions that come along with raising a Dyslexic child. There is no short way to describe those emotions. They range from being diagnosed with PTSD by proxy of your own son due to the amount of fighting that takes place for basic rights. To being medicated for high blood pressure stemming from the constant fight or flight mode one finds themselves in when you begin pushing back and refusing to take NO for an answer. My family lost five years we’ll never get back. Five years where my son didn’t have his “fun” mama. Five years where my husband didn’t have access to his wife. At least not the wife he married. He had access to a wife that was constantly fighting for their child. There have been times where I didn’t even recognize who I’d become. During my fight I lost a piece of my soul that I’m trying to get back. I lost the ability to trust anything I was ever told at face value. It will take me years before I’m able to trust teachers again. My son doesn’t trust them. My son cannot look teachers in the eyes. He even drills down to the gender of teachers he cannot look in the face. That came out in a CBT session with his therapist. My toddler didn’t have her mother fully present in her infant years due to having to fight this broken system for her brother. I wish I could tell families who are just beginning this journey not to expect these things I’ve just typed out. I wish I didn’t have enough for a novel. I wish I still saw hope for our children inside public school. I wish the world knew how amazing Dyslexic children are. I wish they knew how intelligent and empathetic our children are. I wish they’d give them a chance and challenge them to become the best versions of themselves. I wish we as their parents didn’t have to spend so much time explaining WHY we have to fight so hard. I wish for so much more. I will continue to fight this fight for children. Regardless of where my child attends school, I will not stop fighting until our children are accepted for who they are. My son like his aunt and so many other beautiful Dyslexics will forever look back at school as something less than stellar. They will carry the mental and sometimes physical scars with them for the rest of their lives. Their mothers, fathers, and siblings will always be on alert for the unexpected because that’s the only normal we know. We celebrate our son on a daily basis because we know that’s the only acceptance he truly needs and wants anymore. Dyslexia has made our son into who he is now. We wouldn’t change that. If you ask our son if he’d change anything, he will proudly tell you he wouldn’t want to be any other way. He truly believes being normal is boring.
Lauren Taylor is a mother and passionate advocate for dyslexic children. She has made it a personal mission to educate the educators and administrators on the red flags for Dyslexia and Anxiety. When a child is diagnosed with Dyslexia it is not the reading and writing that keeps her up at night; it’s the mental health statistics that come along with that diagnosis that she loses sleep over.