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A Sense of Empowerment

Categories: Learning Disabilities, Parenting, Public Policy/Advocacy

If you really want to know what accessible audiobooks can do for a learning disabled child, just ask his mom. Duke University-based documentarian Liisa Ogburn believes in the power of media and storytelling to inspire people and effect change. As the mother of a child with dyslexia, she draws her own inspiration from family experiences that countless parents in Learning Ally's community can relate to. Q: It seems like every week, a parent writes in to say "Before joining your program, my child never wanted to pick up a book because reading was torture. You've helped my child start to enjoy reading and cherish books." And we’ve had that same experience. Yes, that echoes our experience, definitely. Liisa Ogburn sitting in family room in front of pianoHow has your family’s experience intersected with Learning Ally's mission?  What brought you to us? My son was diagnosed with dyslexia, which we have in the family, when he was six years old at the end of first grade. And already we saw at that point in his class that he was becoming frustrated and had low self-esteem because he could not keep up with his peers. And at that point, every night, because you are supposed to read with your child, we would do it, and we have been for years.  "I read a page, you read a page. I read a paragraph, you read a paragraph" For so long it was like pulling teeth, so painful for him to read, and painful for us to force him to read in this manner. So, like any parent, we just initially just felt helpless and did not know what to do to give him support. We did lots of research and found RFB&D for him in third grade, as well as special tutors using the Orton-Gillingham method of teaching. RFB&D/Learning Ally was tremendous for our son and continues to be. And then with RFB&D and now Learning Ally, being able to download the books that he wants rather than the limited selection at the library has been number one tremendous. And number two, the format of the books is really easy to follow. With typical audiobooks, you can so easily get lost; it’s hard to figure out what page you are on. With the format of these accessible books, being able to follow along by page has reinforced his reading in a way that nothing else has -- and it gets even much better because he himself has chosen the books. I am shocked that dyslexia was first diagnosed over 100 years ago and yet even today, there is so little knowledge and training for teachers on how to address such a predominant learning difference. So you are seeing a sense of empowerment right there, because he is in control — he is in charge of selecting his own material? Exactly. That is the number one on the list, and number two, that you make it so easy for him to absorb it following along in a book. What was going on with the self-esteem issue that you'd noticed in terms of the learning disability? You just flagged this a moment ago in our conversation. Of course. That was what motivated us in the very beginning to really push hard to figure out what to do for him, because his self-esteem had taken such a big nose-dive. It got to the point that we had to move him out of the public school system into private, more tailored education. And then last summer, at the end of fourth grade, with the help of Learning Ally, he started reading a whole series of books, and it just really fired him up! That gave him more confidence to be reading along with what his peers were reading, because he is at that intellectual level but he wasn’t at the reading level. And so then he decided he was ready to be put back in public school with his peers; he could do it!  And now he is eleven and entering sixth grade in the fall! That's a huge change you've seen in him. What format was he accessing his books in? Initially when we first started, we used Sony; they had just started enabling you to download onto a commercially available MP3 player. But we are a MAC family, so it’s been great that recently Learning Ally provides Apple supported downloads. I was speaking with Dr. Sally Shaywitz last week; she is on our National Board of Directors. I have read her book "Overcoming Dyslexia" over and over. She is just tremendous! I'm sure you know the statistic cited so often: one in five have dyslexia. When Sally was talking about it, it had the real ring of authority, and got me thinking how prevalent this particular so-called disability is in our society. And yet when we meet person after person with dyslexia who has been in our program, they turn out to be extremely bright and talented.  So this turns the whole notion of a disability on its head. In your view, is dyslexia really a disability or is it a different way of learning? And are people who have dyslexia endowed with extraordinary capacities to offset the so-called learning disability? Absolutely.  I think the latter, and Sally Shaywitz has done so much work along these lines through the Center for Creativity & Dyslexia at Yale. But in trying to help my son gain self-confidence, someone told me early on that what I needed to give him was the ability to advocate for his learning style. To be able to articulate it and to be able to advocate for what he needed. And so in seeking to do that, we built a website for kids to help them articulate what dyslexia is. And this year he wrote to a number of famous dyslexics who have been very successful, asking them what advice they would give and how dyslexia has served or did not served them in their lives. It was interesting; a number of scientists, including the recent Noble laureate Carol Greider, mentioned that the experience of dyslexia made them work harder or see things in a way that other people couldn’t. So I think you are right. What a gift to be able to reframe what it is, and not only in a negative way. So then part two of my question is if dyslexia is so prevalent, why did you have  to pull your son out of his public school to find some kind of help? And bear in mind, we've met others who have said the opposite, that they had to take their kid out of private school and put her in public school to get the resources to help her learn differently.  Apparently there is no rhyme or reason across the board. I am shocked that dyslexia was first diagnosed over 100 years ago and yet even today, there is so little knowledge and so little educational training for teachers on how to address such a predominant learning difference. North Carolina does not recognize dyslexia.  It just simply does not recognize that it exists and so it is incredibly hard to advocate through an IEP (Individual Education Plan) for your child’s need if the need is not even recognized by the system. You can see in England where they totally recognize it and publicly fund special schools for dyslexics. Ultimately, if you get them early on with services like Learning Ally and specific training, then they do fine.  They flourish. They just need that early intervention and special training as they are starting to learn. I wanted to hear a little more about the things you are doing at Duke in terms of your documentary work and teaching. I work at The Center for Documentary Studies at Duke University.  Prior to that I was in San Francisco during the whole internet boom and bust and by being in San Francisco at that time, I started to get really interested in how to use media to effect change and I did a lot of projects with not-for-profits like the Library of Congress. When I moved back to North Carolina to be closer to family with my children, the Center for Documentary Studies was a wonderful, local place using documentary -- whether it's audio, photography, video or writing -- to tell a story and inspire people or to change public policy or a number of other things. You just dropped a phrase that ignited my interest: “Using media to effect change.”  Knowing that changes are needed in public policy to acknowledge dyslexia as a disorder, or that we need to shift the conversation towards making learning differences fundable on an institutional level, how can we use media to effect change in this instance? Even in the process right now of me telling my story and my son’s story, I just feel charged and inspired to act in some way -- in a way that, if I were seeing a PowerPoint presentation on the stats around dyslexia, I might not be as engaged. In this instance, it is an interesting time to be alive because Sally Shaywitz has pointed out that for the first time we can use an MRI to glimpse into a dyslexic's brain and see how they are processing written language.  We can also see people’s response to stories versus information coming in other ways. Nicholas Kristof, a writer for the New York Times, was recently interviewed and he said, "Over the last 20 years, I have wanted to figure out how I can effect positive change and I have found that the story is what inspires people, motivates them to act, gets people off the couch, either to write a check or become involved in something." And I have had that experience too in the documentary projects that I have created or worked on with folks I am mentoring. Given the conditions in your state vis a vis its refusal to acknowledge your son's learning disability, does that make you want to reach out to other parents in similar situations? One of the challenges I've found is that I just feel like we are all individual parents working alone in our homes.  It is very hard to find groups of parents, at least here in North Carolina. I have not found one and am definitely open to exploring models that have worked in other places. I mean, because all of us are spending so much time supporting our own child, it would be good to pass that benefit on more widely.    - Doug Sprei

Visit Liisa and Aidan's website, Dyslexia for Kids.

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