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Dear Mother in DyslexiaLand:

Welcome to the powerful sisterhood of mothers of amazing children who have dyslexia.

It’s a big, strong network of wonderful and determined women with bright, creative, interesting, talented and inquisitive children who struggle in school because their differently wired dyslexic brain makes it difficult to read, write and spell.

These print-related skills have been deemed essential in the classroom, and students with dyslexia just don’t seem to fit in, even though they are very smart.

You may feel like you don’t either. And you’re tired of asking questions that never get a direct answer; fighting for appropriate approaches to your child’s education; and attending meetings where you just seem to get the run-around.

You want better for your child and for yourself. And you should get it. In fact, your child is entitled by law for a Free Appropriate Public Education. It’s the Appropriate part that always seems to be the sticking point. It often seems like there’s so much official confusion about dyslexia that there is no Appropriate education for students who have it.

Don’t be fooled. You’re smart enough to know better, but just don’t seem to know where to turn.

Here’s the honest truth: In fact, there is Appropriate education for a student with dyslexia; we just don’t see it much in most schools, public or private.

And the sad part is that researchers way back in the 1930s figured out that students with this distinctive learning style need a very specific approach to reading: It’s known as Orton-Gillingham. But you won’t often hear those words in any school, unless it’s a special school designed for students with dyslexia.

The teachers, special educators and even the administrators at your school—or even at your school district—may not even be familiar with this structured type of reading program that is direct, structured, sequential, evidence-based, multi-sensory, and most important, effective. Or they may deny that it’s effective, preferring a product sold to the school district that comes in a nice boxed set.

It’s OK. They don’t know and were never taught about this. But now that you know, you will learn more, you will spread the word, and your child—and others—will get that elusive Appropriate education.

But the truth is, you may not get it in school: You may have to find (and yes, pay for)  well-trained and very knowledgeable professionals to provide proper reading instruction and approaches to education for your child with dyslexia.

Up until now, you may have had a feeling of isolation, figuring you’re the only mother trying to figure this out. That isolation might be fostered by the culture of the schools, where administrators’ worries about confidentiality and privacy seem to extend beyond common sense. In the schools it’s every family for themselves.

There may be another motive: When parents get together and talk, they share information, and understanding about what works and what doesn’t. In that sharing, they may even develop strategies and realize there is strength in numbers, and in speaking out.

Truly you are not alone: You are one in a long line of women stretched over many decades, women who have lain awake at night, trying to understand their child’s unexpected school struggles, haunted by questions about their child’s past, present and future: What could you have done differently? What do you do now? How will your child be successful in the years to come?

You would do anything to protect your young one from the sadness, the unfairness, the humiliation and feeling of shame and incompetence that typically accompany dyslexia in school.

You may not have known which way to turn, where to get help, or how to find the support you need.

Sister, you have arrived. You will find your way. And you will find help along the way—just like so many other mothers who started out where you are, feeling lonely, exhausted and afraid.

Right now you just don’t know what you don’t know. But you will learn as long as you’re committed to the notion that your dyslexic child’s education depends on you. Not the school. It really is up to you. It’s a challenge and an amazing opportunity for to become the kind of mother you are meant to be: Strong. Informed. Unstoppable.

It’s tough being a stranger in a strange land, without a guide, not knowing the terrain, the rules, the language. You can learn to navigate this territory successfully, but you are going to have to work hard to acclimate yourself and learn the lessons you need to know.

Time to get started: Give yourself credit for figuring out that your child’s struggles are due to dyslexia. Say the “D” word—dyslexia—again and again until you say it with ease.

All those syllables and odd letters configured together that mean “Trouble with words.” Say “Diss Lexx EEE YAAA. Diss Lexx EEE YAAA.” Get comfortable saying it because you will be saying it a lot for years to come: “Diss Lexxx EEE YAAA.”

Dyslexia is the word that’s been used for more than a century, so I don’t think it’s going to change anytime soon. And it’s better than “word blindness,” which was the term used a century ago. Yes, it comes from a negative place that ignores the positive aspects of dyslexia.

I wish we called kids with dyslexia something like “superkids” or “amazing thinkers” or “the creative class.” For there are plenty of positives and obvious strengths that are also part of dyslexia: Characteristics like 3-D, big-picture thinking; creative problem-solving; and hands-on learning; along with well-developed senses of intuition, compassion, empathy.

That’s the good stuff that comes with dyslexia, and frankly, we ought to recognize, celebrate and support its strengths, instead of focus so intently on its weaknesses.

If anyone suggests to you that using the word dyslexia is “labeling” your child and will have a negative effect, simply smile and say “Thank you.” And don’t buy into it. Trust that knowledge is power. And relief. Knowing the cause of your child’s struggles is the first step to addressing them properly, providing a pathway to success where previously there was a downward spiral of confusion and despair.

And go ahead and acknowledge that you’ve already absorbed plenty of hurt by the time you have arrived here. You realize you’ve been misled by educators you trusted, They probably told you to wait, to relax, to calm down, not to worry.

“Not to worry!” You want to shriek at them. “That’s easy for you to say. It’s not your child who cries over breakfast; weeps doing homework; trudges to class; makes claims of stomachaches, headaches, earaches, anything, anything to get out of going to school.

Brava, mama, for knowing your child.Brava for listening to your inner voice that is speaking, crying, yelling at you day and night. You know when something is wrong, terribly wrong—not with your child, but with the school system that grinds your child up and wears your child down.

You are right.

It’s not supposed to be like this: School is supposed to be where all children are welcome and taught in the way they learn. And Childhood is supposed to be fun. Far too often, children with dyslexia experience none of that. Their teachers may not realize how smart they are; their classmates may ridicule and bully them.

School is supposed to be a safe place for children—all children, no matter how they learn. And when it’s not, your sense of betrayal is real. And appropriate. Unfortunately, it frequently leads to anger, if not outrage: The people telling you to relax and be patient are responsible for educating your child. And, no matter what they say, you know when they’re not doing what they’re supposed to be doing.

Go ahead and feel those feelings of betrayal, anger and outrage, but keep them at home. Use those strong emotions for motivation, but do not let them override your sense of reason when you seek help for your child. Your goal is to get your child in a place of strength and empowerment at school—expressions of overwhelming anger and negativity toward individuals and the bureaucracies they support will likely take you off path and away from getting the help you and your child need to move forward.

A word of advice: Please, stop blaming yourself. We mothers take the blame for everything that goes wrong in the life of our child, and rarely, if ever, take the credit for what goes right. Your child’s dyslexia has nothing to do with the amount of reading you did when your child was an infant; nothing to do with how soon you began singing the ABC song, nothing to do with how many rhyming games you played.

Your child’s dyslexia is hard-wired in the brain, and grounded in DNA—and it’s a characteristic that has likely been with humans since the dawn of creation. But in a pre-literate society, dyslexia was never noticed, except for its positive attributes: pathfinders, storytellers, stealth hunters and smart strategists, shamans and medicine men and women were all likely right-brained, outside-the-box thinkers.

In more modern times, scientists and inventors in a long line of brilliant innovators from Leonardo da Vinci to Steve Jobs.

Here’s the deal: YOU are the one who will make the difference in your child’s life. Just like Thomas Edison’s mother, Nancy Matthews Elliott. As the story goes, third-grader Thomas came home from school with a note from the teacher that read: Your son is addled. We won’t let him come to school any more.

But what she read aloud to Thomas was: Your son is a genius. This school is too small for him and doesn’t have enough good teachers for training him. Please teach him yourself.Historians debate the veracity of the story, but the inspiration remains. And late in life, Edison wrote in his diary, Thomas Alva Edison was an addled child that, by a hero mother, became the genius of the century. 

 And he famously said, “My mother was the making of me. She was so true, so sure of me, and I felt I had some one to live for, some one I must not disappoint.“

Other famous individuals with dyslexia who have credited their mothers with their success, include Shark Tank’s Daymond John and Barbara Corcoran; actors Channing Tatum and Keira Knightly; and athletes Mohammed Ali and Tim Tebow.

You can do this. You will do this. You have support for your work. It will take time, more than you ever imagined; a major commitment to stretch beyond your comfort level; and determination to keep going even when it all seems overwhelming to you.

I was where you are now, with my smart little boy who was so bewildered when school wasn’t turning out the way we all thought it would; When he was devastated by the neighbor kid who told him “Maybe you can hit a home run, but at least I can read.” When he balked at worksheets, and refused to submit to more special education testing that dug deep into his brain and made him feel like a failure for not measuring up to his high standards.

That little boy graduated from high school with honors; took a gap year filled with travel adventures, internships, well-paying jobs—and most importantly, a time of self-discovery and confidence rebuilt outside of the classroom. After that year of growing-up time away from school, he decided to take classes at the local community college—classes that interested him, instead of being told what he had to learn. Most importantly, he emerged from those 13 long years of school with his imagination, his creativity and his self-esteem intact.

Sometime along that long slog through public school, I realized—just as you will—that school officials were not the keepers of the knowledge—and that, in fact, when it came to the specifics about dyslexia, I often knew much more than they did. No disrespect intended here, just the acknowledgement of reality. This understanding helped empower me, helped me develop a couple of mantras to guide us along the pathway.

I share them here with you in hope that they will help you, too. If these don’t fit, create your own, and keep them top of mind.

The first was“Go where the love is.” No longer would I spend an inordinate amount of time with a teacher who just didn’t get it, and obviously had no intention of learning. It’s pretty easy to tell from the dismissive tone of an e-mail where the teacher sniffs, “I know you have been a tenacious advocate for your son, but this is a rigorous class.” This was not going to turn out well, and an immediate transfer to a class with a more understanding teacher was in order.

The other was “I don’t care what you teach him, just don’t hurt him.” Seriously. I figured his father and I could supplement any classroom lessons deemed important for his grade level. But emotional damage—the kind that lasts a lifetime–was something else again, and it could come from anywhere, any day when least expected.

So here’s my final piece of advice: Realize that you’re in this for the long haul, and that while teachers may like your child, you love your child. Be guided by that love and your own inner knowledge of what’s right and act accordingly. Develop positive relationships with whomever you can in the school, on the school board, in the school district. Network with others in real life and on social media. It will make your life easier, especially in those times when you might need an ally. Learn everything you can about dyslexia, and share your knowledge with others to help make their lives better. Above all, cherish the opportunity to step up, speak out and take care of your child—and the children of other mothers—who have dyslexia.

If it takes a village to raise a child, it takes a sisterhood of understanding mothers to raise a child with dyslexia. You are blessed to have this special opportunity to nurture and develop a person—in such amazing company—with so much promise to make a positive difference in the world. Go for it momma!

With love,

Cheri Rae

Mother of a 20-year-old son with dyslexia

Author, DyslexiaLand

Dear Dyslexia,

It’s been more than a decade since we first met. Oh, yes, I caught fleeting glimpses of you years before we were formally introduced, but I didn’t know how to recognize you.

Long before my little boy was expected to effortlessly decipher words on a page, there were ghostly, momentary clues that just seemed like parts of my son’s personality unfolding. I didn’t know that when strung together they added up to reveal it was you, Dyslexia, in his intriguing brain.

• When he snuggled in to hear storybooks, he never cared about the words on the pages;
• When concepts like yesterday, today and tomorrow just dragged him down;
• When remembering the days of the week, or the months of the year, how to spell his name or recite the alphabet never seemed to matter much to him;
• When tying his shoes and knowing left from right seemed impossible tasks. 

I delighted in all aspects of him, Dyslexia, but didn’t know that these positive attributes, too were related to you:

• His out-of-the-box creative thinking;
• His ability to take things apart and put them back together;
• The wonderful way he could put words together, speaking in a way that would touch the heart and show his spirit in ways that can never be learned from a book; *How his curiosity practically outlined his strong active body and vibrated like an energy field.

He always had an uncanny ability to navigate in the real world, remembering the way back on every hike, and in the complex world of human emotion, displaying kindness, empathy and insight far beyond his few years. After his first ride on a roller coaster he enthusiastically recreated the complex configuration, tracing every dip, curve loop with his fingers in the air. With his obvious intelligence and excitement about the world around him, we confidently sent him off to school with great expectations.

They were soon crushed.

I wish I had understood sooner it was you lurking about, stealing his confidence and undermining his joy in school.

“If only I’d known then what I know now.”

How often do parents say that about you, Dyslexia? Is it every single one of the parents of the 1 in 5 children with dyslexia? That would mean there are millions of parents now looking back and beating themselves up about then.

That coulda-woulda-shoulda nagging feeling that now every minute counts since we lost so very much time we can never make up. Looking back and wishing the timing was different does little good now; perhaps the gift is to pass along some little wisdom to other parents who may be making your acquaintance, but not even realizing it.

But I digress.

You, Dyslexia, began to show your power to separate my child from his friends in school. They continued their joyful exploration, while he experienced woeful frustration in the classroom, where he academic tasks repeatedly revealed his weaknesses in memory, processing, and most of all, reading. The light dimmed in our darling, accomplished and enthusiastic little guy.

In kindergarten.

“Oh, He’s just all boy,” teachers said about his struggles. “Don’t worry, he’s a late bloomer.”  

First grade, second grade, third grade:  “Just be patient,” teachers said as he fell behind his classmates, as his joy at school extended only to his time outside the classroom—playing on the playground, digging in the garden, hanging out with his friends. “I’m sure he will catch up.”

What if he doesn’t? I worried.

Homework was a struggle, reading a mystery. Still no one uttered your name.

Finally, the principal of the school told us we could address our longstanding concerns with a Written Testing Request for him to have his academic performance evaluated, his mental, social and emotional fitness determined. He would be examined to find out what was wrong with him because he didn’t fit into school.

After months of scheduling and testing and waiting, he was declared Disabled.

The Official Report indicated Specific Learning Disability with issues in Memory Processing, Auditory Processing, Sequencing and more. What it all meant remained a scary mystery. I’d never heard these words, never heard of these conditions. There was something terribly wrong with his brain that would limit him in his ability to learn to read, write, spell, do math or ever function efficiently in the world. Forget what we thought was his potential promise; it would not be fulfilled. It was agonizing to feel that this beautiful boy was so limited. But the experts had spoken and we believed them.

And Dyslexia, you were never mentioned—instead they called you Specific Learning Disability, the qualifier for Special Education.

Every day he dutifully left his classroom and his classmates and reported to the Learning Center where nothing much happened in the way of improving his skills in reading, writing or spelling, or his difficulties in processing. Twice a week he also worked with a private tutor—a former teacher—who finally admitted she was as baffled as we were about his difficulties in mastering academics. Every year, while his friends went off to camp, he stayed behind and attended summer school. It didn’t help either.

This went on for years while we agonized over his lack of progress in view of his obvious intelligence, and what we thought was adequate intervention. He was stuck in place in school, while soaring outside of it. We were baffled, fearful, confused, and no one in the school system seemed to be able to help him do any better.

His fifth-grade teacher had a bit of a clue, remarking during a parent-teacher conference “His written work in no way reflects his knowledge or his abilities. It’s like there’s a block between his brain and his fingers.”

That kind and caring teacher didn’t know enough about you, Dyslexia, or your cousins Dysgraphia and Dyscalculia, to make a proper introduction. No one in the school did. But as your presence grew stronger, so did our worry.

We spent many sleepless nights wondering what would happen to our charming and talented boy if he never learned to read, which seemed a distinct possibility. He grew older, taller, and brighter outside of school, accomplished as an athlete, a good friend, and a good thinker.

Despite those daily special education services at school, the private tutoring intervention and the extra help at home, reading wasn’t happening. And didn’t seem like it ever would. But it wasn’t limited to reading: Spelling was a nightmare, and learning the multiplication table seemed impossible.

This Specific Learning Disability was a tough one, we admitted. Despite everything we knew to try, it was stronger than Public Education. And in a time of No Child Left Behind, our boy was left in the dust of high expectations without institutional supports.

And then the unexpected happened. I attended a seminar to support a friend who needed as many people in the seats as possible. Walking in, I knew nothing about either one; walking out, I knew everything I needed to know to learn exactly what I needed to learn.

It was a talk about Dyslexia, featuring a high-energy young man, Jonathan Mooney. He was articulate, funny, smart—a graduate of Brown University, no less. He paced across the stage and described his early struggles in school—how reading out loud was so stressful; how he needed mental health days to cope with the pressure, how he looked for any excuse to avoid reading and get out of class. He said that students like him were judged to fit into three categories: “Stupid, crazy, lazy.” His description of his experiences in the classroom sounded so familiar that I imagined that my own son in 20, 30 years could be him. 

He used the word Dyslexia. Not Specific Learning Disability. Dyslexia. That one word made all the difference. Meeting you, Dyslexia, finally learning your name—that which shall not be spoken on school grounds—changed our lives forever.  

When we lifted the mysterious veil that surrounded you, we moved from a place of confusion and confounding to one of understanding and intrigue: So much to learn about; so many ways to help our boy.

Here’s the bottom line: It took lots of money, time and patience for him to learn to read. And it didn’t happen in public school. Instead, he learned to read when he was in seventh grade, achieving only a second-grade reading level after all those years in public school.

But in a private center, featuring one-on-one teaching of an expensive, scientifically proven, sequential, structured, multi-sensory, one-on-one, highly effective reading process, he learned to read. Immediately. With that intensive intervention, he made progress within weeks, and made up five years of reading deficits in a few months. It was neither a fluke nor a miracle; it was simply getting the right approach to reading after years of sitting in place with ineffective programs and with teachers who had no idea how to teach this boy.

Or anyone else like him. And it turns out, that numbers 1 in 5. Yes, Dyslexia, you’re pretty popular, just very misunderstood.

Learning to read was just the first step to this new sense of empowerment in school as we learned more about you, Dyslexia, and searched the Internet for everything we could find on the subject. And it was a lot. Too much, in fact to keep our heads from swirling with new information but our hearts were reassured with possibilities—and for the first time, hope.

Back at school we developed a new vocabulary: Remediation; accommodations; project-based learning; focus on strengths and co-teaching became our buzzwords. “I don’t care what you teach him, just don’t hurt him” became my mantra. “Go where they love is” was the slogan we used when encountering a teacher who would not bend. It was easier to make a change than fight all semester long.

This family now knows more you, Dyslexia, than teachers, administrators and policy-making politicians do. And with that knowledge, we have earned a seat at the table, a place in the community, to make that important introduction to you, Dyslexia, to provide awareness, resources—and an action plan.

You hide in mystery, Dyslexia, but in reality, you’re not that mysterious at all. In fact, you’re easy to spot when one knows the signs. You’re actually quite the Trickster, hiding in plain sight, almost taunting the unsuspecting to figure you out. And there are plenty of researchers across the nation working diligently to do just that. So much research, but so little of it is embraced by educators or applied in the typical classroom.

After years of focused work by our entire family, our beautiful, kind, creative, industrious boy, graduated from high school—with honors, a four-year college scholarship and a feeling of great relief. He now makes his way in the world, finally free of the sense of continuous failure in public school—let’s face it—a place where he never belonged.

And here’s what he can do: Hike the John Muir Trail; ride a mountain bike in the Canadian Rockies; build an Adirondack chair; wire a lamp, barbeque a tri-tip; work as a car mechanic; engineer a backyard fire pit; support a friend through an emergency room visit; hit a baseball out of the park; learn skills by watching any number of You Tube videos, Ted Talks and TV shows (“Treehouse Masters” or “Fast and Loud” anyone?); maintain friendships over time and distance; treat adults with respect and appreciation; videotape an award-winning presentation; master FileCut Pro; drive a stick shift; build a backyard fence; plan and landscape a drought-resistant succulent garden; apprentice himself to any number of successful entrepreneurs; make a case for just about anything he wants, using reason and charm; flip a car for ten times what he invested in it; plan any number of fun activities with his friends. Works harder than any other student in his college classes and on the baseball field. And in the work world, he is settled into a career where his people skills, excellent memory, persistence, teamwork, and determination make all the difference. This mama who once worried about her child ever getting a job now listens to him complain about the taxes he has to pay on his salary she only wished she ever earned…

He can do this, Dyslexia, because he now owns you. Understands you. Explains you. Embraces you. Works around you.

And more. So much more.

And this is what he doesn’t do: Spell. Write much. Read what doesn’t matter to him. As he puts it: “I don’t want to be bothered by words and sentences and paragraphs and books and essays. I just don’t do them.”

Dyslexia, we have welcomed you into our lives and our family, and share your attributes with everyone we know. No longer a stranger in our midst, you’re now a familiar presence we embrace with ease. Most importantly, we’ve introduced you in all your ways to our bright and wonderful young man who embodies your characteristic strengths and weaknesses. A young man now, he understands how to communicate your presence in his life with others who may not know about you. When my son says, “I have Dyslexia,” you should be proud. As we are.  He is who he is because of you, Dyslexia, and we wouldn’t have it any other way.

Respectfully,

Dyslexia Warrior Mom