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.

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

Dream Bigger Than Yourself

Do you have an idea, a dream, that is bigger than you? I sincerely hope so. Having big dreams is a great motivation to get out of bed every day. It's a great motivation to get out into the world. But are you ever afraid of that dream? Afraid it's too big? Afraid you're not worthy of something that great? Afraid of what others would think of it?

Oh, girl, I am right there with you. But you know what, that dream, that little voice inside of you telling you what you really want, that's your voice. The voice was put there by the all greater universe. And only you have that voice. For so many things in our lives, we, women, play it small. We undermine and devalue what our hearts want. We're afraid to be judged. But here's the truth... you are important. You matter. You have a place. Dreaming big is hard, I get it. But personally, I think that not having big dreams is even harder. 

I often waiver between being terrified that my dreams are too crazy, and wild, and unattainable (what makes me special enough for that great BIG dream?) and wanting more, desperately ready to take off like a rocket after what I want. Do you waiver like that?

But I'm at a point in my life where my fears of not going after what I want are greater than my fears of staying small. I don't care how crazy people think I am. I don't care how many nos I get on my way. By damn, I am going to do this. I will, in one way or another, make this happen.

"It was about no longer being the kind of person who takes what she can get, and finally becoming the kind of person who creates exactly what she wants."

Jen Sincero

I took a four year hiatus from my writing. My last novel was released in late summer of 2014. And then I stopped. Okay, I didn't completely stop. I did occasionally write things that came to mind. But forty, fifty, sixty pages later I tanked those pages all together. Every time. Then I got to the point where I thought, maybe I'm not really a writer, because... HELLO! I'm not writing. Then the other night I had a realization about this. I went to the anticipated encore of Made For More by Rachel Hollis. I've already established my girl crush on her. But she said something that really resonated with me. We all have seasons that we go through. And sometimes those times in our lives demand all our attention and focus. It doesn't mean those things in our heart matter any less to us, but rather that there are other things that need us in those moments. When I look back at the whole picture of my life in the last four years I see two huge events that monopolized all of me, both physically and emotionally. First, I had a medical diagnosis in October of 2014. It rocked my world and created a major upheaval in my life. And I had to give it everything I had. I still have to. And then there is my son. It was shortly after that book release, that his problems with his (at that time, un-diagnosed) Dyslexia emerged, going strong. Getting the help he needed- both with psychologists and the school became a full-on war that I had to fight. It took everything in me. Every ounce of determination I had was poured into what I could do to help my son. I read, and studied, and picked apart EVERYTHING that I could. I learned about what Dyslexia was (I had a very narrow, naive understanding of it), I learned what kind of doctors he needed, the testing he needed, what his rights where, what resources we had... you name it... I learned it. And it took battle after battle, but I got that boy the IEP at school that he needed. I'm entirely certain there are people at his school that think I was an absolute pain in the ass, but you know what? I. Don't. Care. And you know what else? I got what I needed. 

Now it's a new season in my life. And I get to go back to pouring my heart and soul onto the pages I write. Whether it be this blog, professional freelance work I do, or my manuscript I'm working on, I am back to writing. Because I have been a writer all along.

Hello great BIG dream.... I'm coming for you!    

To be a Mother is to be a Warrior

*Disclaimer: this may be my longest post to-date... but it was a story I had to tell, at least for myself.

When we hear the word warrior, what do we think of? What comes to mind when I hear this word is the archetype: a man, decorated with heavy armor, and perhaps a sword or battle ax. It's possible that I've scene The Chronicles of Narnia too much. 

Merriam Webster's definition of a warrior is: a person engaged or experienced in warfare; broadly: a person engaged in some struggle or conflict

Google's definition of a warrior is: (especially in older times) a brave or experienced solider or fighter

Being a warrior isn't just an external roll, it's something that can be very internal. A person doesn't have to physically be a fighter to still be a fighter. In fact, I would imagine that we have more internal fights than we ever do physical ones. Unless you're a boxer or UFC fighter, maybe.

Traditionally speaking, a man is a warrior. But, let us not overlook the fights that women take on throughout their lives, and the lives of their children. We are warriors, too. Mothers are warriors.

Psalms 127:4 says, like arrows in the hands of a warrior are sons born in one's youth.

If our children are the arrows, who is the bow? Mothers.

Lisa Bevere profoundly says, "Women intimately partner with God as they bear and raise children. [Our children] are our seeds and His heritage and reward. They are the ones we launch into the future. They live far beyond us with eyes that see up close what we see only far off in the distance. Their ears will hear out loud things that were only sounded as a whisper in our lifetimes. They are to be carefully aimed and propelled, for they will not easily miss their marks. We are promised that, by raising them in the way they should go, they will be more inclined to hit the target of their destiny in God when they are grown."

Necessary battles await everyone, but who fights for our children before they can defend themselves?  "[Children] alone hold fast and carry into the future what we have already won on their behalf." Like arrows are launched ahead, "our children are sent into the future we may never see."

What are the biggest fights we've had to fight for our children? When, as mothers, have we taken up our warrior personas? As mothers we must lead by example... carefully aim those arrows. Our children will take up as warriors based on what kind of warrior we were for them.

When our children are young, we fight for them. We advocate for them. We are pillars of stone for them. This is what makes us a warrior.

My son is Dyslexic, and getting him the help he needs, that is specific to his learning profile, has been one of the biggest, most exhaustive battles I have ever fought. It has gone on for years. He is nine now and just finished 3rd grade. And it wasn't until half way through this year that we finally were successful with one battle. But the war rages on. And I will continue to be the warrior he needs until the day comes when he can carry the sword and wear the armor I have built for him. 

Ben Foss JD/MBA, author of The Dyslexia Empowerment Plan tells us to tell our story. It helps break down barriers of ignorance and uncertainty. So here is our story. 

The first flag that was ever raised suggesting letters and words didn't come easily to Co was six years ago. I remember having a conversation with his preschool teacher because I was concerned that he just wasn't learning them well. She assured me that he had plenty of time to continue learning his letters. She also told me that boys tend to learn the components of reading slower than girls of the same age. She told me the best way I could help him was to keep him reading. I walked away from that conversation and said, "Okay." I felt better. 

Then his second year of preschool came and at parents' day there were kids, both girls and boys who were reading passages. Now, I know these kids worked on those passages, but my son still didn't know half of the alphabet. I kind of sunk in my chair. That was my second flag.

In kindergarten he made improvement, and I thought to myself, "Oh good... he's starting to catch on." But by then end of the year, when I got his DIBELS score, I was disheartened. Little did I know we would go down so much more than that. So we rolled with it. When I asked his English teacher about it she told me not to worry. He just needed to read more. So that's what we did. We read a freaking lot.

When he was starting first grade I was preemptive and met with his English teacher (he also studies Chinese), and gave her a heads up. She said she would assess him first and then we would have a better idea of what was going on. So I waited... and waited... and didn't hear anything. Then we sat down with his teacher during conferences, and she showed us his score. Definitely below the grade level benchmark, but not something to be "alarmed about." Those were her words. By the end of 1st grade, with his reading scores dropping and dropping, the school's reading coach was brought in. She told us to have him read more. Again. I was mad. I was sick of hearing that. Like his struggle was somehow because we were failing him at home by not having him read enough. But we read...for 20 minutes EVERY night. Plus he was spending at least an hour on homework for a first grader. Was there really MORE to do?! 

Shortly before the end of the school year, the district sponsored an event at a local library that was for parents of struggling readers. So I signed up and went. I got a spot right up front, excited to take notes. I seriously thought I was going to go into that event and learn a few things and take those things home and Abracadbra, everything would be great. It was during this event that I first heard the word Dyslexia. Okay, not technically the first time, I was familiar with the word. But it was the first time this word was ever used in connection with my son. I thought to myself, "there is no way." But he met all the criteria. When the speaker, who's son is also Dyslexic, told us about their journey, how her son learned, the mistakes he made, how he struggled, I began to cry. Right up in front. When I walked out of there that night, I felt heartbroken. I didn't have any answers to take home. If anything, I only had more questions. 

We managed to finish off first grade. That summer Co participated in a 4 week reading program. They did all sorts of reading games and passages on a computer that was specific to them based on their lexical scores. Every day when I picked him up he was always happy and said he had fun. So... maybe this was going to be our turning point.

At the beginning of second grade I also tried to be preemptive, and addressed Co's reading difficulties with his teacher. She was very receptive to the situation and said she would assess him to get a better idea of where he was and then she would start working individually with him. She followed up with me via email after the first DIBELS test (those dang DIBELS, again), and had put together a plan to help him one-on-one outside of the classroom as well as putting him with a small group. Okay... there is a plan. That's good... right? During our first conferences his teacher kindly slid a business card across the table toward me. It was for a center for academics. "They might be able to help," she suggested, "but it won't be free." I looked into it... won't be free... won't be cheap! But surely that didn't matter if it meant he was getting the help he needed. 

He was assessed and the woman that runs the center was very straight-forward with me when she told me how far behind he was. Then, she told me, with a disclaimer that she is not a clinical psychologist and could, therefore, make no diagnosis, but that Co was bullet point for Dyslexia. There it was again... that word... the D word. It scared me a little. I knew very little about it, and come to find out that what I did think I knew about it was actually all wrong. It was time to start asking the hard questions. But looking back, I don't think I was ready for the hard answers at that time.

I prayed. I did a lot of praying. Then I went to the school. Surely they would help me. Oh boy was I naive and ignorant. I authorized an evaluation, to this day I don't even know what it was. Which sounds terrible on my part. But I have the consent form as well as their proposed action and the name of the assessment is on none of it. The school assessed him. How? I really don't know. But I got a letter: Notice of Refusal of Proposed Action. My heart fell. The letter even had statements in it that said: "needing strategic support and intervention in reading, but not intensive support." The school's solution was to have his teacher do more individualized work with him in the classroom. That sounds great and all, but how is a teacher supposed to hone in on my son while also teaching 25 other kids all in the span of half a school day because the other half is spent in their dual language? His teacher looked as frustrated as I was. So I asked the school... if I suspect Dyslexia, where would I go? They told me to go to his pediatrician because it was a disability. The pediatrician referred me to the school because this was an academic issue. WTH?! I prayed harder and harder but I was beginning to think that God and I were speaking a different language. Why would He allow us to hit all these barriers? All I wanted was help with reading for a seven year old.

This is the moment I realized I was going to have to suit up for battle. Mom walked out the door, and in came a warrior. 

I began my personal education program, all self-taught on Dyslexia, what it was, how it worked, and where to get help. I found a psychologist in downtown SLC and called for an intake and when I finally was able to speak with someone about the doctor I wanted to see, I was told that they wouldn't be able to get my son in for about three months. I started to cry. Trust me, warriors still cry. They put me on the cancellation list and then I had to sit and wait. Ironically, I was in my counseling appointment when I took this call so my therapist was extremely helpful in those moments that followed that call. Later that evening, I got a call. I actually had considered not answering it because I didn't know the caller. But I did. It was the doctor, herself, calling me. I was flabbergasted. Not only was it way after-hours, but we weren't even actual patients at this point. And she was calling me anyway to give me some advice! Co would need testing. It was about $150 an hour and he would test for about eight or nine hours. Then there would be the interp for another $150 an hour for about 12-18 hours of interp. And... 0% would be covered by insurance (gasp!). BUT, legally, the school had to do the same testing if I requested it in writing. The doctor told me I could then schedule with her and she would review the test results. She was going to have her assistant call me in the morning and make sure to squeeze me in. Was this really happening? Why was she calling me? Doctors never call, even when it's their actual patients! Maybe God and I were on the same page.

 I followed her instructions to a T and went to the school's administration, officially requesting testing for sped. They weren't super friendly about it but cooperated anyway. The admin we worked with put a document in front of us. And it was full of legal and academic jargon that I had no idea how to process. So we went down the list and she gave us an "overview" of each line in "laymen's terms"... so I accepted or declined testing based on her recommendations of what Co needed. It took almost the full 45 school days for them to get started, but it started nonetheless. And I was called in for a meeting. Tim came with me, and there was a whole team for the school. It was a little intimidating. They gave me another document refusing sped. I was devastated. How could they look at one document and think my son was performing in a 'normal' range yet on his DIBELS he was almost 40% BELOW the benchmark. And on his schoolwork he was getting 2,3,4 points on tests with 30 questions. 2/30... how does that fall in the 'normal' range? I was devastated. I was mad! Honestly, I started to lose hope. I tried hanging onto Hebrews 11:1 Now faith is confidence in what we hope for and assurance about what we do not see. But my faith bottomed-out. 

I took the results to the other psychologist in SLC and she looked at the exact same data the school did- it was their results- and the doctor found alarming red flags throughout all of it. Then she asked me about why certain things were missing. What did she mean? I wrote an actual letter to the school requesting exactly what the doctor had told me to. I pulled out the letter (I actually kept a binder where I had everything organized by grade level for him from: tests to work samples to follow up emails to progress reports to rejection letters), and I pulled out the form where I accepted/declined parts of the test. Remember, I did that based on the school's recommendations. Yeah... turns out I declined testing on some of the things that would have mattered most. They basically just gave him an IQ test, of which he actually scored above average on. Now I was pissed. The kicker... he was not eligible to be tested on any of it for 365 days. I wondered, and still do today, why they wanted to test his IQ when he should have been tested in reading and writing? Did they think because his scores were low that he was stupid and that was why they tested the IQ and not the reading? The problem for Co came with decoding and phonemic awareness, as well as letter recognition. He was anything but stupid. He loves art and music and has a strong aptitude for math and science.

I was discouraged, mad, emotional,defeated, frustrated, emotional some more. I would sit in his room at night after he'd fallen asleep and I would run my fingers through his hair and sob while I silently prayed to God to get him the help he needed. I would kiss his forehead and tell him, mostly to reaffirm to myself, that I. Was. Going. To. Get. Him. Help. We read every night (every year people told me that was what was going to make all the difference), he went to a literacy center twice a week, he had special group reading/instruction, he had one-on-one reading/instruction time... but come the end of the year, the DIBELS came back. He'd tanked it once again. I hate the DIBELS. I even took them to the woman who ran the literacy center that he went to. She told me that I had to find a way to get over the DIBELS. The point of that test was to test for speed and accuracy. His accuracy was never too far below benchmark, it was his speed that was killing him. It was taking him too long to decode and process what he was looking at. But why, why did he have to read fast? Isn't the tortoise the one who wins the race? Not because he is fast but because he constant. That made sense to me. Nowhere in life has it mattered on any scale how fast or slow I could read. The point was that he was able to read. Who cares if it was slow? I was actually encouraged to opt him out of the DIBELS moving forward. Which he will take three times a year until 7th grade. But I decided against that. Not because I liked stressing out every time those numbers came back terribly low and in bright, blazing red that meant he was in the high risk/intervention category, but because they were hard evidence of his low proficiency. We managed to survive second grade.

Welcome 3rd grade. This would be a pivotal year for reading. According to the American Educational Research Association, a student who was unable to read at grade level by the conclusion of 3rd grade was actually 4x more likely not to graduate and almost 70% chance of never catching up to his peers. Until this point, students are learning to read. After this point, students are reading to learn. Remediation becomes much more difficult. A below average reader in first grade is only 13% likely to be on reading level by the end of third grade, according to a research study. Co's beginning of year DIBELS for third grade was:

Words Correct: 34... the benchmark is 70

Accuracy: 85%... benchmark is 95%

Fortunately, his third grade teacher was amazing. They were all good and helpful up until this point, but this teacher went out of her way to accommodate Co in ways no one had before. And she became my biggest ally. She went to the administration requesting further testing for Co. They denied her. It wasn't past the 365 day window. Technically the school could choose to test before that, but I had no say in the decision, it was completely up to the school. But this didn't stop his teacher from accommodating him though. She did things like: not making him read aloud in front of the class for something he hadn't prepared in advance for, she read test questions to him, and gave him the option of a re-test (with another reader for support) for things he failed. The point was to test him to see if he knew the material. Not to see if he could read the questions about the material he was being tested on. She even accepted audio books he had read through the year because they were still books. In a culture with so much emphasis on eye reading, I was amazed at how open-minded she was. 

I went back to the drawing board. I met with the psychologist in SLC again and she helped me more and more. It was clear to me I was going to get no outside help. I'd felt abandoned by even God. I was on advocacy websites, I combed through the district's safeguards and procedures handbook: highlighting and underlining legal jargon that I turned to Google with to understand it all. I learned our state and federal rights based on legislation. I became very vocal and attracted help from other teachers in other states, a vice principal in Texas who was on her school's IEP team, a resource teacher for our district who taught at the high school level. Now I was beginning to understand Co's rights. And then I found GORT. Gray Oral Reading Test. And I confirmed that that was a test I never legally opted out of. So, I composed an email and sent it to the whole admin team at the school and requested this test. Then I spewed out some legal words and laws that were in place and I even quoted passages from their own safeguards and procedures manual... I totally made it look like I knew EVERYTHING. Proverbs 18:21 tells us that our tongues have the power of life and death. At that point, it felt like I was actually fighting to the death. The admin actually asked me where I learned about the GORT. I just simply told them that I'd done my homework. So, I signed the document requiring the school to test him. About 3 weeks later I got an email- Co was approved for an IEP. Finally, a freaking legal document that required help and intervention for him. I cried in relief so hard when I got that email. And I re-read it about 50 times to make sure I saw what I saw. I was exhausted. I had been fighting for this since school began for him. And I swear if one more person ever tells me that my son simply needs to read more, I will chuck my shoe at them. 

When I got the proposed IEP document, I looked over every word. I googled suggestions of things to have in it. And when my husband and I went to our first IEP meeting, I pulled out my copy of the document which was all loaded up with changes I wanted to make... they were not pleased, but agreed to most of what I proposed. 

So the battle was won. Unfortunately the war still rages on. And it will, at least until Cohen gets through school. I just have to be on top of his IEP and his academic performance so that I can advocate when and what changes will need to be made along the way. The IEP is a living, breathing thing that will need to change and mature as he does over the next several years. But like I said, this battle has been won. 

This fight has taught me so much. I have learned so much about myself. 1) Even after a million tears have been shed, I am not a quitter. 2) I would move mountains for my children. 3) I didn't realize the true capacity of my strength until being strong was my only option. 4) I am a warrior.

I am often applauded for my fight and subsequent success. And I've had other people come to me for support and information, and I am more than happy to share what I have learned. But I don't think I did anything special - nothing that should ever be outside the norm of the lengths a mother would go to for their child. I want to give my kids the world, and teach them to believe they can be anything they want. I want to raise children who make an impact, who make a difference. I'm just hoping I can be a good teacher, that I can take a proper aim so that when I send arrows off to the future they will hit their marks, that they will be equipped with the ability to not only be warriors for themselves, but for others as well. 

Wonder what reading is like for Cohen? You can play a little game where you are timed to see if you can decode a sentence the way a Dyslexic person would see it. Click the link to Understood, scroll down to "Simulations" and select "Reading Issues". You can skip the short video clip before you begin the game. Give it a try. Dyslexia isn't just about reading things backwards. It is a distinct physiological characteristic relating to brain function. Dyslexia is a part of 1 in 10 people in America. Unfortunately remediation will only take Cohen so far. At a point, he will not be able to go any higher. Which is where technology comes into play. Fortunately we live in an age where we have all the technical advances that we do. Dyslexia is a physiological characteristic, it is not a disease and does not have a cure.

To truly chase our dreams, we need to be strong and steadfast. Our bravery helps us rise and fight back against our fears.