"We are parents of children with dyslexia who have gone through some of these struggles and a system that’s difficult to navigate."
When Allison Quirion first noticed her son, Jack, struggling with reading, she alerted his school. The school’s response: that the kindergartner was just going through a normal phase and not to worry. Thankfully, Quirion didn’t heed that advice. She also didn’t listen to the reading teacher who said, “He’s never going to read like normal kids.” She recalls the moment after hearing those words, “I went to the car and I was crying. I just knew that was so untrue. Someone who has dyslexia can learn to read. Maybe his rate of reading won’t be the same, but you can’t tell me he won’t read like a normal kid.”
The tears soon changed to resolve, and Allison began educating herself. “I’m not an educator at all. My background is in law, as a paralegal. I guess maybe my research abilities and attention to detail and organization helped me navigate, but I just educated myself on it. Nobody helped me do it. It was a learn-as-you-go type of thing.” As the founding member of the Decoding Dyslexia Connecticut chapter, Allison Quirion is hoping that the grassroots dyslexia advocacy organization will help other parents to avoid some of the heartache and support one another.
While Jack was being tested for dyslexia and proper programs were established to support him, Allison had been watching what other states were doing for dyslexics. That’s when she learned about the founding chapter of Decoding Dyslexia. The New Jersey organization was formed by a group of parents who joined together to advocate for their children. “I thought that it was such a great movement by impassioned parents. So I contacted them, and they said, ‘We want other chapters. We don’t have anybody in Connecticut so we would love for you to set up a Connecticut chapter.’ So, with the help of the New Jersey group, we got things up and running.” That was in February 2013. With only just a few months in existence, the chapter has garnered support from professionals across the state, as well as from parents and school administrators.
Quirion stresses that the group is not a business, or a group of professionals, or experts in the field by any means. “But we are parents of children with dyslexia who have gone through some of these struggles and a system that’s difficult to navigate,” she says. “I would say, ‘Try these steps. Look at these things.’ There are so many great resources out there, but when you are navigating and in the thick of it sometimes it’s so hard to figure things out. I hope that what we do empowers people to become greater advocates for their children and to challenge school systems if they think that something is wrong.”
A very big part of the success of Allison and Jack’s story is that Allison went to work on remediating Jack’s dyslexia even before she knew for certain Jack was dyslexic, although she does give some credit to her son’s school system. “I do believe that it’s a mixture of their wanting the best thing for my child and my advocacy. I’m not sure if they would have done something right away if I hadn’t been so insistent and then following through when a program wasn’t working. I did tons of research and kept going to them. I worked with them because they were working with me. I’m lucky and fortunate.”
“I still work on his encoding (spelling), and his fluency (rate of reading), and these are things that he is going to be dealing with because he is dyslexic, but he can be a reader. He can be a writer. He can spell. He can do it.”
Advocating for Jack was so much a full-time job that when Allison’s old boss called to see if she’d come back to work, her son said, “You can’t go back to work. If you were working we would not know I have dyslexia.” Allison observes, “He knows how much time and energy that I’ve put into getting him to where he is.” Jack and his mom also know that the work is ongoing. “There are always things to follow and ways to keep him moving forward,” says Allison. “I still work on his encoding (spelling), and his fluency (rate of reading), and these are things that he is going to be dealing with because he is dyslexic, but he can be a reader. He can be a writer. He can spell. He can do it.”
Of course, not all parents are able to put this much time into educating themselves, working with the schools, doing remedial work with their children, and still have time to be, well, a parent. This is where Decoding Dyslexia comes in. Parents join forces to share experiences with one another, and share their stories with their legislators—to put a face on dyslexia so that legislation can be put in place to help the 20% of the school population so that no parent has to work as hard as Allison has to get the support needed for a child struggling with dyslexia, and to ensure that a school system has to listen and act.
Decoding Dyslexia empowers parents to help themselves, and to help one another. Furthermore, they are willing to share their stories with other parents, and with lawmakers and school administrators. Doing so will go a long way toward encouraging legislators to act, and that, in turn, should require schools to recognize dyslexia and provide that invaluable support for students with dyslexia. “Testimonies that let legislators know what’s happening with our kids, delivered by the parents, come across as genuine. We want families to let legislators know this is what’s happening to our kids in our schools, and we need help,” explains Allison. “It’s not that we are doing it right at this second for our kids, but we are doing it for the kids to come.”
“I hope that in the end of all this, we are able to get Connecticut to implement legislation to take care of our dyslexic students. I think that would be the greatest result. I could say if we had a definition of dyslexia in the education code, if we had teacher training, early screening, and then the implementation of evidence-based programs, we would be so much farther ahead with these children who have dyslexia. It would just be so great for them to get off on the right foot instead of struggling for years and then trying to remediate all those years. It’s hard. Jack had to make up three years of reading. That’s a lot.”
Parents who want to get involved with Decoding Dyslexia Connecticut, or another state’s chapter, can go to Decoding Dyslexia’s website and click on “About Us” to see which states already have chapters set up. What if there is no chapter set up for your state? You can start your state’s Decoding Dyslexia Chapter. The original chapter, Decoding Dyslexia-NJ, has created a PDF guide entitled, “How to Start a Grassroots Movement for Dyslexia” to help you in the process. Click here to see the PDF.
Footnote: The Yale Center for Dyslexia & Creativity Co-Directors, Drs. Bennett and Sally Shaywitz, in collaboration with Decoding Dyslexia NJ, addressed nearly 500 enthusiastic attendees at a special program on May 2, 2013 in Connecticut, that featured the Shaywitzes speaking on “Translating Research into Practice: It’s Time!” and included a presentation of the documentary The Big Picture: Rethinking Dyslexia and a panel discussion.
The program was exceptionally well received.