The DNA of Decoding Dyslexia

by Doug Sprei, National Director of Communications Flashback: October 2011. . . On a warm fall day, I headed down Route 1 to meet up with a small gathering of parents in Laurenceville, New Jersey. I didn’t know much about the group, but had been told that they all had children with dyslexia, were meeting formally for the first time, and wanted to explore ways to connect with other parents like themselves around the state. As I walked into their borrowed conference room in the Laurence Branch Library, just a few miles down the road from Learning Ally headquarters, I saw seven moms and one dad assembled around a table, launching into conversation. The atmosphere was alive and energetic. They had invited me in to share some tips and best practices around PR and social media to help strengthen their networking reach.  I spoke to them for a while about making media lists, writing news advisories, taught them about setting up Facebook community pages and Twitter handles. . . then sat back to take in their discussion. At some point I sensed that this was not an ordinary meeting and found myself sitting riveted on the edge of my chair. Each parent shared stories about trying to work out situations with their child’s teachers. . . skirting conflict with school administrators. . . anxiously negotiating IEP plans. . . wrestling over accommodations . . . trying to decipher state disability policies.  Phrases like self-advocacy and free appropriate public education reverberated around the room. Most of all, I could feel their collective striving to encourage each other and maintain positive direction within an overwhelming maze of challenges.   A fierce bond within this nucleus group of parents was unspoken but palpable: We are all on the same page here. Fast forward:  Within a span of three years, this tiny nucleus of parents in New Jersey has exploded into a national network with active satellite groups in all 50 states and four Canadian provinces. Decoding Dyslexia is a full blown parent-driven movement now -- a grass roots force to be reckoned with that is steadily influencing education and disability rights policy at the state and federal levels. The dynamics behind its lightening-paced growth and sustained cohesion would be great fodder for a major sociological study.  Our good friend, the educator and blogger Kyle Redford took on the subject in a Huffington Post piece a while back. Since that initial historic meeting in late 2011, I feel that DD's essential atmosphere, its "DNA" if you will, continues to replicate and guide the actions of the movement's leaders across different states. Their constant virtual interaction through social media, complemented by on-the-ground collaboration in state and national events, has played a huge role in fueling its growth. This is truly a "Rising Tide Raises All Boats" movement. It's been a pleasure to get to know scores of parent members and collaborate with them in settings ranging from local community events to Capitol Hill. For all of these years, the Learning Ally team has been energized by the atmosphere of this surging parent community for the benefit of hundreds of thousands of children and families. A few months ago I reached out to some DD state leaders and members to get their sentiments about reaching 50-state critical mass.  Here's what they sent in:

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“DD means to me that there are many others on which I can depend, that are working for the greater good of not just their own child, but all children.”  –Lisa Nelson   “I always wanted to make a difference in the world, but I never really thought it would actually happen. Decoding Dyslexia has made that a reality. Words can barely describe how amazed and awestruck I am as to how all this has unfolded by a handful of parents with a little idea. We weren’t even sure this would take off in our own state (NJ), let alone the whole country. I still can’t believe it has actually all happened and in such a short period of time. I’m very honored to be a part of this amazing group of people and it’s just remarkable the impact we’ve had on the world, literally the world.” –Liz Barnes, New Jersey   “DD means that my family and I are not alone. A group of strong, educated and passionate people are pushing for change. . . a change that can significantly and positively impact so many." –Debra McDade Rafferty “DD has helped me locate the tools and information I needed to be a proper and effective advocate for my son. I am stronger emotionally, and more importantly, my voice is stronger because I now have the confidence to hold the school system accountable and I now know what a free and appropriate education actually means for my child. DD has also helped me get through the layers of emotional turmoil that I felt while trying to help my child. I no longer have the anger that I first felt – anger towards myself, the school system and the many failures that helped contribute to my son's difficulties not only academically but socially. I now have a passion to help create change politically, in my state, district and town school system. I keep asking myself ‘what are the biggest problems’ that I encountered with in the special education school system and how can I help create a solution to those problems.” –Jamie Crenshaw, Vermont “I had to figure it out alone for my child and don't wish that on anyone. DD to me is the opportunity to connect and share information with the people who need it, so that students with dyslexia are recognized for the intelligence and potential that they have rather than the challenge that unaddressed, holds them back.” –Nancy Duggan, Massachusetts   “Decoding Dyslexia is a voice, and a voice in support of my son, a voice in support of families and a voice in support of educators. The impact of dyslexia is much greater than has ever been previously addressed and now Decoding Dyslexia has given me and this community a voice that is being heard in every single one of our 50 states!” –Kristin Matz Kane, Virginia   “I got an email today from a DD member in another state who is moving to my state and needed to know what school district was best for dyslexia and generally what the landscape is here for learning disabilities. The fact that all she had to do was go to the national DD website and click to find a resource to help navigate a big, stressful move -- that's just awesome!” –Jenifer Kasten, Arizona   “Hitting all 50 states is powerful - and really helps bolster my ability to engage key stakeholders in conversation about the power of the parent voice via Decoding Dyslexia and other parent-led advocacy initiatives. It's great to be able to say ‘DD is in all 50 states, and now Canada’ -- this grabs attention like nothing else I've seen. The power of the parent is prevalent!!” –Lyn Massey Pollard, Texas “It means to me we have a nationwide cohesive voice to draw attention to a group of children with the potential of solving the world’s problems.” –Michael Kaczor “DD in all 50 states means that we are Better Together -- our voices will move the US and Canada to change the way reading is taught. We hope to give a voice to the voiceless and ultimately ensure that all students are literate no matter their race, income level or trade.” –Laura S. Schultz, Maryland “Parents understanding their power to affect change and acting on it. I've never been prouder than I am to be associated with this movement!” –Deborah Lynam, New Jersey "DD means being that support for the parents and students that walk the road I've already traveled... as well as a community of knowledge and support on the path for educational equality that we continue to travel on together.....but more importantly, being that voice and advocate for the countless children who walk this journey alone... With no parental voice or advocate, to call their own!" –Jody Perrin-Walters, West Virginia   [caption id="attachment_34164" align="aligncenter" width="670"] A Decoding Dyslexia community event in Arlington, Virginia, 2013.[/caption] If you're a parent seeking connection with other parents on the LD journey and are looking for resources to help your child, you can find your Decoding Dyslexia state branch here.  Also, Learning Ally offers free support for parents and can help you get connected. Call us at 800.635.1403 to set up a one-on-one phone consultation with our team of parent support specialists.