The Diary of a Family with Dyslexia
"I was a mother with learning disabilities trying to advocate for my son who also had learning disabilities."
When my son, Ben, entered school I noticed that he was having difficulty learning to read. I tried to get help from the school system, but they just put him in special education classes. I knew that there were other options that might help Ben that the school system wasn't trying. I went to my husband to try to explain. I knew what I wanted to say, but I couldn't relay my feelings in a way that he could understand. I went to the school system to try to explain, but because I couldn't speak education jargon, I couldn't get my point across to them either.
By the time Ben was in the fourth grade, the stigma of being in special education classes, and the lack of progress and success for all of his efforts, left him feeling degraded and hopeless. We tried various methods to help my son -- vision training, Irlen lenses, tutors, and art therapy -- none of which helped him. My husband, a lawyer and member of the school board, had faith in the school system. He assumed that they knew what was best for Ben. I knew that Ben was not getting the help that he needed. I grew more and more frustrated.
I knew first-hand what my son was going through. At the time, I had undiagnosed learning disabilities that compounded my frustrations. I was an above-average student through high school, earning good grades that helped me get accepted into Vassar College but I ran into serious difficulties in college. My handwriting was terrible. I couldn't write or type well, and I couldn't spell. It was really difficult to decide on a major because of my writing problems. I decided to major in art history, but I couldn't pursue a career in the field because I couldn't master foreign languages. I graduated from college feeling like a total failure. Fortunately, I found a job where I learned film editing. This lead me to a career in film making.
I found my niche in the film industry. As a filmmaker, I could express myself through sight, sound, and motion. I didn't run into the problems that I did in an academic setting where I had to produce written text. Ironically, I made an award winning film about a businessman who learned to read with the help of an adult basic education tutor, but it did not occur to me to relate this information to my own situation.
My learning disabilities really affected my relationship with my family. I could not communicate with my husband, causing my marriage to fall apart. I could not get Ben the help he needed for his dyslexia. I couldn't even help him with his homework. Life was very hectic. I felt helpless and humiliated.
I was at my wits end when my family was referred to Louisa Moats, a learning specialist and dyslexia expert. She tested Ben and recommended the Greenwood School, a residential middle school for boys. Greenwood exemplified everything my own research and intuition told me was necessary for Ben's progress. All aspects of the curriculum use the Orton Gillingham phonetic, multisensory approach to language. The strong arts program integrates language, social studies, and math skills in a meaningful way, and the school fosters a strong sense of self-worth, community, and respect for the environment. After much initial resistance, Ben began to thrive at Greenwood.
When the staff at Greenwood discovered I was a filmmaker, they asked me to produce a film about some of their students. As I was shooting footage of the students, I was amazed at how I could relate to some of the issues the students had. These students not only reminded me of what I had been through with Ben, they also reminded me of myself! Now that Ben had the help that he needed, I knew I needed to get help for myself.
I had a battery of tests done, including a Weschler Adult Intelligence Scale (WAIS), that revealed that I had dyslexia, dysgraphia, and an attention deficit disorder. Now I knew why it had taken me so long to finish my assignments in college. I began to see why I had not been able to help Ben with his homework. I understood why it was difficult for me to participate in Ben's Individualized Education Program (IEP) meetings. I was a mother with learning disabilities trying to advocate for my son who also had learning disabilities.
I learned that learning disabilities often occur from one generation to the next. Now that I knew about my learning disabilities and my son's learning disabilities, I began to think about my father. My father always relied on my mother to take care of family business, like paying bills or writing checks. He always relied on his secretaries to help him with the writing requirements of his job. I remember my father having problems explaining things to me. As a child, I thought my father didn't care about the family, because he was very withdrawn and short with words. Could it be that my father, like me and like Ben was struggling with learning disabilities?
When learning disabilities occur across generations, it puts a unique twist on family literacy. My mother read to me when I was a child and I, in turn, read to Ben when he was a child. Reading to a child exposes the child to information, increases the child's vocabulary, and provides time for family interaction. However, reading to a child does not guarantee that the child will be able to read, especially if the child has learning disabilities. As an adult with learning disabilities, reading to Ben allowed me to work on my own literacy skills.
As a person with learning disabilities, I have learned to advocate for myself. I have grown beyond the frustration and tears. I am taking language classes and working with tutors to develop strategies for my learning disabilities. I am currently working on a documentary that explores the difficulties, as well as the gifts, that come with dyslexia. I will explore how dyslexia plays out in educational, legal, and health systems, work, marriage and daily life, across gender and generations.
Ben graduated from high school as a member of the National Honor Society. After graduating, he got a job to earn money so that he could study and earn college credit in Kenya with the National Outdoor Leadership School. When he returns, he will be attending Evergreen College in Washington state. Our journey has been a long, difficult one, but I wouldn't trade it for anything.
About the author:
Dorothy Tod is an award winning documentary filmmaker and mother with dyslexia. She has produced and directed over 100 short animal films for Sesame Street, What If You Couldn't Read? and Warrior's Women for Public Television. She is currently working on and fundraising for a documentary on dyslexia in the family.
This story first appeared in the Spring 1996 issue of "Linkages," the newsletter of the National Adult Literacy and Learning Disabilities Center.