Supporting the Dyslexia Sisterhood

By Cheri Rae

Making connections; supporting each other. We need to take care of our Dyslexia Sisterhood.

When I began my dyslexia journey more than a decade ago, I was confused about where to turn, feeling tentative about moving forward and dismayed that I had misplaced so much trust in the school system to help my struggling son.

Back in those days there was no social media network to consult, so I sought help from the one dyslexic advocate in town. Joan guided me, supported me and provided the information and encouragement, wisdom and leadership I needed to understand dyslexia and begin to advocate for my son. She volunteered her help and, although I tried to pay her, would never take a dime for her work. She felt compelled to pass along her knowledge out of her sense of goodness and paying it forward whenever possible.

Out of respect and deep gratitude, I vowed to do the same.

Over the years, I learned a lot, and have shared my knowledge as Joan did. Because I am a journalist by profession, I also wrote many articles and editorials about dyslexia to increase awareness and action.
Eventually wrote a book, DyslexiaLand: A Field Guide for Parents of Children with Dyslexia, in the effort to empower other parents and provide the insights needed from Day One.

My publisher grumpily indulged my request to send out more than 100 complimentary copies to dyslexia moms across the country to thank them for their inspiration and support.

Like Joan, who eventually retired, I also founded a non-profit, The Dyslexia Project, and became a strong advocate in my community and beyond, working hard to earn grants and funding. The goal and intention of all this work is to support and provide resources for other parents, and to encourage them on their unexpected need to become knowledgeable about dyslexia in order to help their children. I’ve answered emails and private messages with women all over the world; spoken on the phone and met with dyslexia moms over coffee—with tissues close at hand—more times than I can count. These connections make all the difference—for them and for me.

And I like to think they have an effect on making much-needed changes to create more dyslexia-friendly communities.

In my book, I even dedicated a section to “Dyslexia Warrior Moms,” …Moms have mastered media to form a powerful social network for support and the sharing of resources. The moms may not see each other often, know one another in any other context except dyslexia circles, and may have wildly dissimilar political beliefs, but when they do meet, it’s a warm and deep connection. They speak the same language, share the same frustrations, and celebrated the same successes. There is strength in numbers, and in a unified message: The educational needs of children with dyslexia must be properly addressed and mothers will not go away….

I thought we were all in this together. But lately, I’ve noticed that something has changed: Beyond Dyslexia Warrior Moms, Dyslexia Mama Bears and The Dyslexia Sisterhood, something else has crept into DyslexiaLand, and evidence of mean girls in our midst has unexpectedly surfaced.

In the middle of a movement, that beautiful tapestry of dyslexia understanding and awareness I thought we were weaving is beginning to fray and rip apart. Plenty of mothers—suddenly faced with myriad issues that are part of dyslexia—aren’t experts in special education or assessments; linguistics or advocacy; reading approaches or reading programs; dyslexia strengths or dyslexic challenges, behavioral or socio-emotional consequences. Many don’t even know what they don’t know, and are just researching in all directions at once.

They are well-meaning moms trying to figure out where they are and where they are going—and what their precious children may face at different stages of life. They’re anxious, scared, and driven to solve the puzzle of dyslexia.

And sometimes they make a mistake in their urgency to collect all the information they possibly can so they can make sense of it all and help their struggling kids.

Not everyone has the benefit, like I did, of having a nearby expert advocate who offers to help. So these days, those dyslexia moms who can’t get any straight information from the education establishment, venture online seeking relief and support. Shockingly, too many dyslexia moms have been in tears lately over how they were treated—not by the bureaucratic school system—but by each other. Some have been ridiculed and embarrassed, shamed and shunned, blocked and bullied—and left wondering why.

So much unexpected anger in what was supposed to be a place of refuge and understanding: True believers in one form of reading and language instruction express anger at the other approach; there’s anger about whether or not we can use the word “dyslexia.” Some individuals with dyslexia are angry about non-dyslexics speaking for them; some professionals are angry that too many mothers expect expertise for free.

This unexpected infighting is quite troubling for all its implications. It undermines the empowerment process of those who need information, and it also short-circuits the possibility of making lasting institutional change in the schools. Ultimately, it hurts dyslexic kids. We can’t move forward if we don’t feel safe.

I intend to keep encouraging dyslexia moms to learn everything they can to become well-versed in all things dyslexia so they can advocate successfully for their dyslexic children—which helps all dyslexic children. I encourage them to do their research, read the books and articles, watch the videos and learn how to make a difference–first in their own child’s life, and when possible, to stay involved to influence change in your community and beyond.

And I hope to remind those who are now-exasperated experts to remember the difficulties of the journey: Please exercise patience and kindness to those just starting out—like we all did. If you expect to be paid for your expertise, make that clear upfront so you don’t feel that anyone has taken advantage of you. If you are a True Believer, recognize that others have the right to hold true to their beliefs as well; no one is trying to lie, cheat or steal anything.

Expect that everyone’s motives are generous and good. Those who are seeking information, please be thoughtful and recognize that dyslexia-related professionals require payment so they can continue their important work. And let’s all remember that those who have paid their dues have gained wisdom along with way; treat them with the respect they have earned.

It’s just the right thing to do. And if anyone deserves a little extra forbearance, it’s mothers on a mission to change the world—whether they’ve just entered DyslexiaLand or have lived there a long time. We’re all in it together, in this Dyslexia Sisterhood of support, empathy and kindness—and despite some missteps, still strong and united when we come from a place of positivity, love and forgiveness. As Gandhi said, “Be the change you want to see in the world.”

Cheri Rae is the mother of a 22-year-old son with dyslexia, the director of The Dyslexia Project and the author of DyslexiaLand: A Field Guide for Parents of Children with Dyslexia.