Twelve years ago, Deborah Lynam was faced with trying to get help for her oldest son who she suspected was struggling with dyslexia. Frustrated by the misinformation and inaction of her son’s school, Deborah determined her son was dyslexic through an independent evaluator and saw to it that he received private tutoring in reading.
Just a few years later, she was hopeful that strides in recognizing and providing appropriate interventions for dyslexia had been made in her school district. But when her youngest son also began to have problems with reading, she realized: very little had changed.
That’s when Deborah Lynam joined with other New Jersey parents who had experienced many of the same struggles in their school districts with their children. In October 2011, the group met to discuss their shared experiences and to map out a plan to fix the problem. That group became Decoding Dyslexia.
Today, with branches in all 50 states, Decoding Dyslexia is a powerful grassroots movement that has been very successful in bringing the discussion of dyslexia to the forefront in public education. Among its goals are: creating a universal definition of dyslexia and to ensure all states provide screening and appropriate remediation for all dyslexic students.
You can learn more about Decoding Dyslexia and its fifty state branches, here: http://www.decodingdyslexia.net/home.html
Can you briefly describe your family’s journey with dyslexia?
I have three boys. My oldest and youngest are dyslexic. When my oldest son started to struggle learning to read it caught me off guard and I relied heavily on our public school for answers. Unfortunately, those answers did not lead us to timely or effective interventions. He was receiving support services through our school’s basic skills program but it was not helping him close the gap with his peers. During this time, I was actively searching for answers myself in books and online. There was not a whole lot out there 12 years ago and definitely difficult to zone in on resources when I did not know we were dealing with dyslexia.
I remember asking his basic skills reading specialist at one point if it could be dyslexia. She replied that she couldn’t say and that she really didn’t know much about it. By third grade, he was significantly behind and a comprehensive special education evaluation finally revealed a “specific learning disability” in reading. Again I asked if it could be dyslexia and was told this time by the school psychologist, “No, we don’t recognize dyslexia.” Unfortunately, I was still learning about special education, reading disability and reading interventions myself, so I did not quite understand the subtleties of this statement.
It was months later after paying to have a private evaluator review my son’s reports that I came to understand that, in fact, we were dealing with dyslexia and very specific interventions were going to be needed. We were fortunate to have resources at our disposal and a combination of IEP services, private tutoring and assistive technology. With these, we were able to support our son and help him overcome many of the challenges he faced with reading, writing and spelling.
I became more and more knowledgeable over the years and I felt totally prepared when my youngest entered preschool four years later, already showing some of the now familiar signs of dyslexia. I expected that my strong knowledge base and advocacy skills would be just what was needed to get supports in place for him in a much more efficient timeframe than what happened for his older brother. I was very wrong.
I was truly shocked to see that he was going to first endure all of the same inappropriate interventions and ill-advised “wait and see” philosophies that his brother faced. I came to realize quickly that the problem was not my own knowledge base as a parent, but that it was a systemic problem in our school.
The information I was learning about the importance of early screening and intervention was not easily discussed within the school setting and my knowledge about dyslexia and the methodologies needed to teach reading and spelling were definitely not aligned with the knowledge base of my son’s educators. I realized that I was now caught between two worlds. On the one hand, I explicitly knew what my son needed but I was working with a school system that did not understand things the way I did. My youngest did not receive the supports and services he needed until 3rd grade just like his brother before him, even though I was advocating for the best practices this time from the very start.
How did you first get involved with what would ultimately become Decoding Dyslexia New Jersey?
I came to realize that the knowledge base I was building around the special education process, learning disabilities and reading development was something that I could share with other families. I started volunteering with a parent support group in my local school district and eventually began working part-time at my state’s federally funded Parent Training and Information Center called the Statewide Parent Advocacy Network (SPAN). I also took a position as a Parent Group Specialist on a grant project called the Statewide Technical Assistance & Resource Team (START). We assisted parents and school districts looking to establish state mandated Special Education Parent Advisory Groups as well as disability-specific parent support groups.
It was through this work that I met fellow parent, Andy Kavulich, who was interested in working specifically on issues relating to learning disabilities and dyslexia in his county. In the fall of 2011, Andy invited a group of parents to join him at a luncheon in New York City hosted by the National Center for Learning Disabilities. It was there that I met this most amazing group of parents all interested to see changes in the way dyslexia was identified and dealt with within our schools. We decided to start meeting as a group on a regular basis to discuss ways we could support families and bring about policy change in our state. We called ourselves Decoding Dyslexia – NJ and we started to work on a mission statement and policy goals.
What was the biggest issue facing parents in New Jersey when you first began to organize?
In 2011 work had already been underway in the NJ legislature on a NJ Reading Disabilities Task Force. This initiative was single-handedly sparked by the hard work and perseverance of NJ mom, Beth Ravelli and her daughter, Samantha. Beth recognized that children with dyslexia like her daughter were not being systematically identified and offered interventions within our public schools. She brought to light the fact that schools were not consistently screening students for signs of early reading struggles and they were not offering evidence-based interventions to students who needed specialized methodology for dyslexia.
Their story was one that many of us had been following and we instantly reached out to Beth to find out how we could support her endeavors. Beth introduced us to the legislators she had been working with and coached us through the early days of committee meetings and legislative testimony. It was decided that we would focus our early efforts on bringing attention to the work of this Taskforce and encourage families to share their personal stories with its members and their own local politicians. Beth notified us that a public hearing would be held at the NJ Department of Education so that the Taskforce members could hear public comments on the state of reading disabilities within our public schools.
We put out a call for action to our followers and overwhelmingly the testimony they submitted referenced dyslexia time and time again. Those parents, students and experts who spoke urged the members of the Taskforce to produce a report that would offer sound recommendations about what could be done to better identify and serve students with reading challenges in our public school system. Ultimately this Taskforce produced a report with recommendations that were then turned into the language for six dyslexia bills that were introduced to NJ legislature in 2012.
It is very empowering to become part of a peer support network whether you are looking to develop skills to help advocate for your own child or looking to affect systemic changes in your local school or community.
Were you surprised by the national response to the group’s Facebook page and the rapid growth of other branches of Decoding Dyslexia?
I would say that I was definitely surprised by the rapid attention and press our group received from various organizations, news entities and the quick growth via social media channels. I think I was less surprised by the growth of the grassroots parent movement itself. Somehow, I knew how big this issue was and that families—when given the opportunity to unite and work on systemic change together—would ultimately jump in with both feet and begin the hard work. You cannot underestimate the collective power of parents. I learned this through my years of work on parent engagement initiatives. When parents are empowered they can move mountains and Decoding Dyslexia offered a vehicle for parents to find their own collective voice. We knew what our children needed and we knew what was missing in terms of support and resources on every front. Once we started talking, I believe we just became a magnet for families across the country who were recognizing similar deficits in their schools and communities.
In educator Kyle Redford’s Huffington Post article on Decoding Dyslexia in 2013 (available here: http://www.huffingtonpost.com/kyle/decoding-dyslexia_b_2718729.html) she praises the group for its inclusive nature and active outreach to other like-minded groups. Can you expand on Decoding Dyslexia’s approach as an organization?
Decoding Dyslexia is a grassroots movement first and foremost. We are not an organization. There is no central leadership. It is about inspiring people to become active at the local, state and national level when it comes to dyslexia and literacy related issues. This means we need many diverse stakeholders – parents, educators, activists, policy-makers, non-profit and for-profit experts, researchers and students themselves. We are interested in uniting people who want to see real lasting change and in helping them find ways to personally contribute. All perspectives are needed to advance the mission and there is no room for egos, only common ground. Sometimes it can be challenging for other organizations to understand how to collaborate with a grassroots movement. We want them to understand that if they are working to improve the supports and services for dyslexia in our public schools then they are actually part of the movement!
Kyle and the folks at The Big Picture: Rethinking Dyslexia documentary reached out to us at Decoding Dyslexia – NJ very early on and we can’t thank them enough. I personally believe they are part of the reason this movement has expanded so quickly. They brought us a certain level of immediate credibility that may have taken us longer to build on our own. I am grateful to them.
To view clips from The Big Picture documentary and get info on how to view the complete film, check out: http://thebigpicturemovie.com/store/
In your opinion, what’s been the movement’s biggest accomplishment to date?
I think you would get a different answer depending on who you ask. We have definitely contributed to some great things – Annual Dyslexia Hill Days in Washington DC, representing dyslexia at the national celebrations of the ADA and IDEA anniversaries, collaboration on the International Dyslexia Association’s Annual Parent Conference, support for the initiatives of the BiPartisan Congressional Dyslexia Caucus, engaging on national policy endeavors such as the READ Act, and the USED guidance document on dyslexia.
Personally though, I would say it is the strength of our national network. For a long time, I felt alone on my journey. I was making headway for my own kids and in my local community but I was alone. Now I am empowered by the collective momentum of something very, very big. It amazes me that I can visit any state in the country (and even a few Canadian provinces) and touch base with fellow Decoding Dyslexia activists.
This not only sustains me personally, as there truly is a close-knit comradery among us, but also fosters an environment that has the potential to bring about real change. We believe in never reinventing the wheel. Members share knowledge, resources and ideas across states. We encourage each other when the work gets hard. We share insights when the work gets tricky. We are all in it for reasons beyond our own personal gain yet somehow we are all gaining something very valuable from it. I encourage people to get active in their state’s movement to learn what I am talking about.
Beyond every school in the nation offering testing and appropriate interventions for students, what else would the Decoding Dyslexia movement like to see happen on a national level?
Decoding Dyslexia works on five specific policy goals which are most often addressed at the state level. They are:
- A universal definition and understanding of “dyslexia” in the state education code
- Mandatory teacher training on dyslexia, its warning signs and appropriate intervention strategies
- Mandatory early screening tests for dyslexia
- Mandatory dyslexia remediation programs, which can be accessed by both general and special education populations
- Access to appropriate “assistive technologies” in the public school setting for students with dyslexia
At the national level, we would love to see more accountability measures built into current federal legislation such as IDEA and more funding for research that will help get the science of reading into the nation’s classrooms. We would also like to see our country’s institutions of higher education develop better teacher preparation programs. We hear from teachers everywhere that they do not feel prepared to teach all students to read. And those who do receive the professional development to build their knowledge on reading practices and the structure of the English language often ask why they never learned these things in their college programs.
Can you briefly describe your current work with the AIM Academy in Pennsylvania?
I am so happy to be with the AIM Institute for Learning & Research as their Director of Partnerships & Engagement. The Institute is affiliated with the AIM Academy, a private school for students with language-based learning disabilities in Conshohocken, PA. Our goal is to bring the science of literacy and learning into our region’s schools, classrooms, and communities. We partner and collaborate with leading literacy experts, scientists, and practitioners from across the country to help translate the latest research in the areas of reading, writing, and spelling to support both educators and parents in building their own individual knowledge base.
We recognize that parents and teachers will play prominent roles in building demand for high quality literacy programs moving forward and we are working to prepare them for these roles. We offer a selection of research based teacher training programs as well as an annual Research to Practice Symposium and Access to the Experts Speaker Series. We strive to play our part in closing the gap that exists between science and classroom practice. We recognize that this work has to move beyond the walls of outstanding private LD schools such as AIM Academy and begin to reach our nation’s public, private and charter school environments.
I think it’s interesting to note that the two women, Pat Roberts and Nancy Blair, who started this amazing school and training institute are both moms of daughters with learning differences. It couldn’t be a better fit for me!
We are interested in uniting people who want to see real lasting change and in helping them find ways to personally contribute. All perspectives are needed to advance the mission and there is no room for egos, only common ground.
What advice would you give parents who are just beginning their own family’s journey with dyslexia?
First I would say, you are definitely not alone. If you feel like you are, then please connect to your state’s Decoding Dyslexia movement or another local resource or parent organization. There is a lot to learn and the learning curve can be quite steep. Connecting to other parents along the way can shorten your own journey. It is amazing how much information you can glean from a parent just a few steps ahead of you on the path. It is very empowering to become part of a peer support network whether you are looking to develop skills to help advocate for your own child or looking to affect systemic changes in your local school or community. I attribute much of my own growth and knowledge to the many wonderful parents I have had the privilege of learning from over the years.