The Incredible Loneliness of the Dyslexia Mom: An Acknowledgement and Some Support

By Cheri Rae

The coffee house where I used to hang out with friends is nearly deserted during these days of coping with Covid-19. I usually make drip coffee at home now and drink it alone. But I had an early morning socially distanced meeting today and stopped in for a special treat. To go.

While I waited for my latte, Florence and the Machine’s “Dog Days are Over” blasted over the sound system. Hearing the catchy, upbeat tune, the first thing that popped into my mind was, “Oh, yes, Florence Welsh is dyslexic.” The next thing that popped into my mind, as I kept time and watched the staff bop along to the song was, “I bet I am the only one in here who knows that.”

And then I thought about all the other stuff I know about dyslexia that sticks in my head and comes out in the most unexpected times and ways. When my dad and I recently watched “Patton” I told him that the famed general was dyslexic. When my friend recently posted her admiration of Antonio Gaudi, I mentioned that the brilliant artist/architect was dyslexic. When I spoke yesterday with the executive director of an education nonprofit, I confirmed that a local philanthropist is dyslexic.

This arcane knowledge just sticks in my head and pops up when least expected. But this kind of depth awareness

about dyslexia, after more than a dozen years as a determined advocate, goes far beyond identifying famous dyslexics. It extends to approaches to reading, local and national literacy statistics, frustration over the lack of institutional change over time, the concept of literacy as a civil right and an issue of equity, the articles, charts, research, videos and books that best explain various aspects of what can be done to improve the lives of dyslexics.

Like so many parent-advocates, I’ve endured the eye-rolls from educators who make comments like “I’ve never had a student with dyslexia, so you’ll have to give me some information.” I’ve had administrators tell me, “Students with dyslexia just have to learn how to suck it up.” And I’ve had friends who have questioned accommodations, asking, “Don’t you think it’s unfair that your son gets more time, and my son doesn’t?”

I’ve learned all about special education and IEPs, and worked hard to get exactly the right wording, the right goals in place, only to have the document ignored by classroom teachers. And my son rebel against having anything to do with special education.

I’ve attended school board meetings where parents weep as they beg for help for their dyslexic children but after their three minutes are simply dismissed by stone-faced trustees who don’t bother to comment or follow-up.  Or learn what they could do to stop the educational struggles of kids in their care. I’ve read the campaign literature that touts the transparency and communication skills of those same trustees running for re-election. So they can continue their same ways for another term and never make any meaningful progress.

It makes me want to scream out the truth, but no one wants to listen to that.

We have to be careful, civil, mask our anger with reasonableness, for give our humiliations, ad go along and get along or they won’t listen. But when we are patient and collaborative, they don’t listen to that, either.

My inbox, phone records and daily journals reflect that I am not alone. Every week, I hear from parents who are stymied by the educational system, feeling so very alone in their journey to understand the numerous complex issues associated with dyslexia, and frankly, in fear for the futures of their children. I share my experiences, provide insights when I can, offer support and a sympathetic ear. I even wrote a book to help other parents.

We moms of children with dyslexia seek out support anywhere we can. Since the school districts know there is strength in numbers, they work hard to keep us apart, citing confidentiality concerns. But the kids all know who is struggling and who isn’t.

On social media, we connect with literal strangers far, far away who often understand our concerns better than our real-life friends and members of our own families. We don’t want to talk about dyslexia all the time, but quite honestly, it’s often the most important issue going on in our lives, and we need to unburden our hearts, express our concerns, vent our frustrations at the hands of the education establishment. But even social media has been taken over by groups with agendas not apparent to most who participate. And while social media may connect like-minded people in the virtual world, it’s not likely to have much effect on making much institutional change in our local schools.

Individually, we seek solace in learning everything we possibly can about supporting dyslexic strengths; all those inspirational success stories about dyslexics who have “made it,” and buy into the notion of dyslexic superpowers. In doing so, we worry if we’re putting too much pressure on our kids, who maybe don’t want to claim superpowers, they just want to be considered typical kids who can just enjoy their childhoods, their classroom experiences and their day-to-day lives.

My parenting mantra has always been “roots and wings.” Providing that supportive platform for all our kids, including those with dyslexia, so they can fly on their own. I admit to getting a bit research-obsessed about dyslexia, but now that my dyslexic son is 23, and flying strong and secure on his own ~ after the trials and tribulations of public school ~ I want to offer a little support to those parents on the journey: Go ahead and learn all you can and do all you can about dyslexia, protect your child’s well-being from bureaucratic excesses and know that they will be okay because you are there, a loving, supportive and knowledgeable parent.

Yes, it is lonely along the way. But reach out in your community where you find it ~ or create your own. And dance to the music when you hear it. Because, even when you least expect it,  it’s there.

Cheri Rae is the author of “DyslexiaLand: A Field Guide for Parents of Children with Dyslexia.” It is available at DyslexiaLand.com and on Amazon.