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