Updated: Oct 29
We at PA Parent and Family Alliance are strong believers in the idea that one mother, father, grandparent, or parental figure can move mountains in order to get their children the resources, and attention they need in order to flourish. The only thing stronger than a parent fighting for the rights of their children is a group of parents teaming together to get things done for the benefit of all. While this is a very powerful force, setting it up and organizing parents together can feel like a daunting task. We sat down with two women, Anne Edwards and Liz Barnes, of Decoding Dyslexia who have valuable insight on how DD has grown to reach every state in the country and how they have kept their members invested in the cause.
Decoding Dyslexia is a parent-run grassroots movement that has grown from a group of parents who met on the New Jersey Transit. These parents bonded over the fact that they all had children who were struggling with dyslexia, and schools that weren't helping. Now they are a group that has caused legislative changes and has started the long process of growing recognition for what children with dyslexia need to effectively learn in the classroom. We wanted to get some tips on how they have been successful, and how they continue to grow and overcome obstacles along the way.
Click here to learn more about the social, emotional and behavioral difficulties that accompany dyslexia.
1. Do Your Homework
"First thing you have to do is do your homework, know and learn what is being done by whom, and how they are doing it." said Edwards. According to Edwards if you are looking to take the first couple of steps to organize a group of people you must try and know as much as you can about the topic you're trying to change. Barnes was in complete agreement with Edwards; Barnes started her research on dyslexia when she was trying to help her school-aged daughter who was not getting the tools and attention that she needed from her public school. "I work in and have my degree in the field of marketing but I simply started googling everything I could to try and get a better grasp on dyslexia and what my child was going through when trying to read and learn in school. I quickly found out that my simple googling gave me more knowledge on the topic than a lot of special education teachers in our school district even had, which fueled my fire even more.".
Edwards and Barnes were in consensus that doing your research has got to be step one for anyone looking to start a grassroots movement. From their experiences it allowed them to hone in on where they wanted to see change and what the biggest and most pressing issues facing children with dyslexia were. Through this initial step of research, they were able to develop a 3-point-mission to Empower Parents, Raise Awareness, and Talk to Policy Makers. Barnes and Edwards both expressed that researching the disparities of education that children with dyslexia were facing and seeing that many school districts had zero to minimal steps in place to help children made them eager and well equipped to join in on a long battle.
2. Play to People's Strengths
When talking to both of the women about the success of DD this was one point that was stressed throughout each of the interviews. Edwards, who works with PA's chapter of DD went on to say that once she got a list of parents that had expressed interest in joining she called each and every one of them and started talking. She asked them how much time they had to invest, how much they have on their plate, and what they would be interested in doing. She used these initial conversations and the following interactions to get a sense on how they could use their personality style, and skills to best serve DD. "There are people who want to do behind-the-scenes work, and then there are people who are comfortable approaching lawmakers or speaking in large groups. Both of these kinds of help are so vital to achieving our goals and parents are more likely to continue helping if they enjoy the work they are doing.", explained Edwards.
Barnes explained that they like to give parents independence to express their own ideas that they would like to work on rather than assigning jobs randomly to everybody. Barnes herself utilizes her own strengths in marketing and PR to run Facebook competitions and contests that get their followers educated and involved. She went on to say that she has a new mother that joined that has a passion for getting impactful messages out on Instagram and Barnes gave her the go-ahead to get an account started. By playing to people's strengths everyone stays more invested and comfortable with the work they are doing. Also, you get to have the best possible product being produced and distributed to your readers because people who love to and are good at writing are working on the newsletter, and people who are great and persuasive conversationalists are talking to lawmakers.
3. Be Creative and Utilize Social Media
One of the main obstacles facing any grassroots movement is a lack of funding. Barnes, who is one of those original founders from the NJ Transit, says that while their reach and impact has grown, funding really has not. They combat this obstacle by using creative ways to get their messages and resources out. Social media has played a huge role in allowing Decoding Dyslexia to gain traction and spread their message. "Social media represents our reach without funds. Between all of our social media pages from each state, we reach about 200,000-300,000 people all over the country and in Bermuda and Canada, and it is all 100% free."
Facebook is where Edwards first got that list of parents who were interested in helping out. This social media platform allowed DD to send out a post asking interested parents to message them. This freeway of gathering people lead to Anne finding Pennsylvania's Chapter core 16 parents that have made massive strides in changing the mindsets of educators and legislators. Social media can grow your reach to more people than you ever expected and at a much faster pace than if you were using the traditional "word of mouth" strategy that many historic grassroots movements have used.
4. Get Your Wishlist in Order
Edwards stressed the importance of understanding the most immediate problems associated with your cause. By sitting down and talking to everybody about what, in their opinion, was the biggest problem facing their children they were able to get together a preliminary list of what must be done first. In the case of Decoding Dyslexia what Edwards and Barnes found most important was educating people, but most importantly educating school districts and educators about what dyslexia actually is. Like the behavioral, mental health, emotional, and social difficulties that the parents of PA Parent and Family Alliance are used to handling; dyslexia is often misunderstood. Barnes expressed that so many people think dyslexia is an intellectual or visual issue, and few know that it is actually neurological.
After they were able to start the process of educating people and letting the school districts know what was needed they were able to transition into discussing legislation with lawmakers. They then got to start doing what Barnes thinks is an essential next step; getting universities to work on how to teach children with dyslexia into their curriculum. Barnes was so disheartened by the lack of teachers who knew anything about dyslexia and has been working with teaching universities to add it to their student's learning. Decoding Dyslexia was able to optimize their impact by prioritizing what must be done first, and then what can be a secondary goal. According to both Barnes and Edwards, this allowed them to gain the necessary momentum to continue making an impact.
5. Remind Yourself and Others Why You Started
What makes their advice and stories so applicable to the PA Parent and Family Alliance mission and readers is the fact that Edwards and Barnes are mother and daughter. Both of these inspiring women were drawn to the cause because they got a first-hand view of how dyslexia can make a student's experience so much more difficult by seeing how much Barnes's daughter and Edward's granddaughter struggled in school. This is the driving force to keep going. When asked what keeps Barnes motivated she said "all I have to do is look into the eyes of my child, and I know every second of the work is worth it".
While reminding yourself of the origins of your interest is essential in remaining invested, sharing your story with others can help grow the cause even further. Barnes cited seeing other mothers and parents on Facebook with similar stories to hers and they always made her feel so much more understood. She went on to say that not many people realize how much value your story could bring to a cause or to somebody else's life. She told us about a time where a young boy was brought to a conference to speak to educators and lawmakers about how dyslexia can impact a student. He went on to share with the room that when he was struggling with trying to keep up with and understand what was going on in his classroom he felt so isolated that he began having suicidal thoughts. This very personal and brave story not only sent shivers down the backs of every parent in the room but also was an eye-opening moment for people to see that it is so much more than reading and writing, it is the world that reading and writing unlocks. This young man's story caused a massive impact on the conference and everyone in attendance perspective on dyslexia.
Grassroots movements are amazing ways to gain traction on important issues to you and your families. If you are thinking about joining or leading one to better the life of a member of your family, remember that you're able to do remarkable things and make massive strides. Find people who face similar problems to you and get organized using the tips listed above. What started with a group of parents sitting in a train has flourished into a nationwide movement that has spurred legislation in 47 states, and has changed the minds of 100,000's. This all started because of how strong a parent's love is for their child; a love that can move mountains, span from coast to coast and make a change for the better.
For more information on Decoding Dyslexia click here to be linked to their website.
Click here to be linked to PA's Decoding Dyslexia Facebook page.
Special Thanks to Liz Barnes, Anne Edwards, and Rosette Roth from Decoding Dyslexia.