decodingdyslexia

Decoding Dyslexia — A Grassroots Parent Movement on a Mission

Written by Lyn Pollard, NCLD Parent Advocacy Manager | March 14, 2013

Have you heard the buzz about the Decoding Dyslexia (DD) grassroots parent movement? No doubt about it, it’s spreading like wildfire. Started by a passionate group of New Jersey parent advocates to raise awareness and improve dyslexia services in local schools, there are now more than 47 states and one Canadian province with Decoding Dyslexia organizations.

What’s the buzz about? How fast and furious the movement is not only growing but attracting parents ready and able to quickly come on board, buy in and effectively deploy DD best practices in their own states. The result? Decoding Dyslexia entities popping up from Texas to California to Oregon to Florida.

On a Mission

Each DD state group agrees to a central mission, which sounds something like this. (This one’s from my home state!)

Decoding Dyslexia – Texas is a grassroots movement driven by Texas families concerned with the limited access to educational interventions for dyslexia and other language-based learning disabilities. Our mission is to raise dyslexia awareness, empower families to support their children, and inform policy-makers on best practices to identify, remediate and support students with dyslexia in Texas schools.

Educating and empowering parents, providing resources and support and rallying parents to approach state lawmakers about much-needed changes when it comes to dyslexia identification and remediation are what the DD movement is all about.

Big Deal

And, important folks are talking about it, too. Kyle Redford, education editor for the Yale Center for Dyslexia and Creativity and mother to son Dylan in The Big Picture: Rethinking Dyslexia, puts it this way in her recent Huffington Post article:

Decoding Dyslexia has proven to be an inspiring study in commitment, strategy and persistence… They have convinced eight New Jersey Representatives to join the U.S. Bi-Partisan Congressional Dyslexia Caucus, have helped publicize the work and recommendations of their state’s Reading Disabilities Task Force and are currently working to get six dyslexia-related bills passed in the New Jersey State Assembly and Senate.

Most importantly, they have spurred an extraordinary parent movement.

Back to the Start

But while the mission is clear, and the effect is already undeniably visible, have you heard how Decoding Dyslexia got its start? It’s a great story, and one that’s near and dear to the NCLD. It all began with a train ride…

In Oct. 2011, eight parents went on a train to NYC to attend a National Center for Learning Disabilities (NCLD) luncheon. On that train ride, we shared our stories, our struggles, our heart breaks and our frustrations and anger about trying to help our dyslexic children and getting nowhere within our public schools.

No one was from the same NJ town, but we all had similar stories. We were virtually strangers to each other. By the end of the day, we declared that someone should do something to help other parents like us and to fix the system. We decided that collectively, maybe we could be that someone. (Via www.DecodingDyslexiaNJ.org)

Now that’s how a grassroots organization ought to start. Completely organically, based purely on necessity and the strong desire to feel connected to like-minded people, knowing that change just can’t take place any other way.

That raw need and razor-sharp focus is clearly reflected in the Decoding Dyslexia mission and efforts today.

And, it’s worth mentioning that the NCLD played a key part in helping equip these original DD leaders by providing parent advocacy training and support. After all, central to the NCLD key mission is helping parents help their kids with LD.

On the Horizon

So, what’s next for this passionate and motivated group of dyslexia advocates? Well, New York City, of course! Going back to where it all began, Decoding Dyslexia parent advocates from more than 20 states have been invited by Drs. Bennett and Sally Shaywitz to attend a national gathering in Manhattan this May. The small group of DD state leaders will spend the time connecting, becoming better educated and sharing knowledge between states related to dyslexia legislation and strategies for school-based improvements.

Take a Turn

Concerned about dyslexia identification and services in your local schools? Ready to do something about it? Start a Decoding Dyslexia organization in your state!

Start by downloading the DD-NJ “How To” guide to learn about how to start a grassroots movement in your state:How-to Guide to Start Grassroots Movement for Dyslexia. Check out NCLD’s LD Advocates Guide for more on advocating for your child and all people with LD.


Lyn Pollard is a writer, advocate and mom to two kids with learning and attention issues. As parent advocacy manager for the National Center for Learning Disabilities, Lyn helps connect parents to resources and empower them and their kids to become effective advocates. As a founding member of Decoding Dyslexia Texas, she works to raise awareness and improve school-based special education services in her home state and beyond.

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