By Sally Absher
Three years ago, eight New Jersey parents took a train to NYC to attend a National Center for Learning Disabilities luncheon. All from different towns, they found they had similar stories, struggles, heart breaks, and frustrations and anger about trying to help their dyslexic children. By the end of the day, they declared that collectively, they could do something to help other parents and to fix the system. Decoding Dyslexia New Jersey (DD-NJ) was born.
Now there are Decoding Dyslexia groups in 47 states (including Tennessee) and British Columbia. It only takes a handful of concerned parents to start a movement!
Local parent Jules Johnson is one of the five founders of the Decoding Dyslexia-Tennessee (DD-TN) chapter.
Johnson told the Focus that her son was diagnosed with dyslexia in August 2013. “Like any parent, at first I was in shock (this wasn’t just a reading delay), then I was in research mode, then I started looking for support. I found very little local groups for parents, and actually, the only one in Knoxville had a mere 9 Facebook members, only one of whom was active.”
She said what surprised her most was how dyslexia support paled in comparison to autism support. Autism affects 1 in 68, and dyslexia affects 1 in 5. “Why were there not more support groups for dyslexia? The only thing I can think is that dyslexia has such a stigma – who wants to admit their kid can’t read?”
But she adds, “I’ve learned that the gifts of dyslexia are creativity, science and engineering skills. STEM (Science, Technology, Engineering, and Math) is the big ‘hot topic’ in education, and these are the areas where kids with dyslexia generally excel. So, we need to change the stigma.”
While doing research to answer questions about her son’s dyslexia, Johnson kept running across “Decoding Dyslexia” in her internet searches, but found no chapter in Tennessee. The New Jersey DD website said “Email us for a guide to start a chapter in your state!” So, she emailed.
It turns out that four others, all from Nashville, also emailed the NJ organization, who put them in contact. Decoding Dyslexia TN was born on October 28, 2013. The five founding members don’t meet in person, but through social media they are able to plan events and get things accomplished!
Founding members include parents Jules Johnson (Knoxville), Rachel Doherty (Nashville), Melissa Tackett (Brentwood); parent, tutor, and professional advocate Eileen Miller (Nashville), and educational psychologist Dr. Michael Hart (Nashville).
There are now over 700 members in DD-TN (50 members in Knoxville). Both Johnson and Jennifer Nagel from Knoxville serve on the DD-TN leadership team.
Johnson says “DD-TN is a grassroots movement. We have NO money and we do not try to raise money. We are all volunteers, even the leadership. We advocate for positive changes in our public schools, and we also work to raise awareness. We are mostly parents, but also include professionals in the dyslexia community as well as adults who have dyslexia.”
Since their founding one year ago, DD-TN has accomplished much:
1. Gathered with other DD National members in Washington, DC in June 2014 to rally support for US House Resolution 456 on dyslexia awareness. So far, only one US Rep from TN has co-signed the resolution, Rep Dr. Phil Roe. We are pushing for all of our US Reps from Tennessee to co-sign.
2. Instrumental in getting the Tennessee Dyslexia is Real Law passed this past June. It passed unanimously. All of our founding members also serve on the Dyslexia Legislative Alliance, along with members from the Tennessee International Dyslexia Association (IDA) This bill defines dyslexia, requires teacher professional development and requires teacher colleges to come up with a plan to educate future teachers on dyslexia.
3. Participated in two national social media awareness campaigns (#showme1in5, and #RedeemingRed);
4. Participated in a national DD social media conference sponsored by Learning Ally in New Jersey;
5. Held a booth at the TN IDA 2014 RISE (Reading Instruction Successfully Enhanced) conference in Memphis;
6. Held book signings this summer in Nashville and Knoxville with former Tennessee Titan, Jovan Haye, dyslexic and author of “Bigger Than Me;”
7. Held a state-wide art show in September 2014 titled SHINE: An Art Show celebrating the unique dyslexic talents. This show had artist as young as 6 years old lined up side by side with professional artist Angelina Mazzanti of “All Jumbled Up.” The show was part of the Franklin Art Scene, and O’More College of Design was the host;
8. Secured Dyslexia Awareness Proclamations in both Knoxville and Franklin;
9. Lit the Henley Street Bridge Red as part of World Dyslexia Day, October 15th, to raise awareness for the 1 in 5 and redeem red; and
10. Working with Young Williams Animal Center to be a central supplier of volunteers for the “Paws for Reading” program.
In addition, the group is making a difference in public education. Several Tennessee districts, including Knoxville, are making small changes.
DD-TN and TN IDA members met with KCS administration last spring to request an Orton-Gillingham based reading program be offered as part of the new RTI2 state initiative. The district looked into it, agreed, and is using SPIRE, an OG based program, for RTI2 Tier 3.
More recently, Knoxville leadership met with Dr. McIntyre and Melissa Massie (Student Support Services) to discuss bringing professional development to KCS, and they said they hope to put something in place.
Johnson said, “Things are not perfect in the educational world for dyslexic students, but we are happy for small strides. This is a marathon, not a sprint, and we are thankful for these steps.”
For more information, check out DD-TN on Facebook (https://www.facebook.com/decodingdyslexiatn)