Saturday night, while sitting on the back deck at the shore having dinner with my parents, my sister, and my 10-year-old son, the topic of dyslexia came up. Here’s how: Jess was having trouble understanding the plans we were making for later in the week. He calmly and even with humor, expressed his confusion and I, in laughable exasperation exclaimed,
“Your dyslexia is driving me crazy!” Not my finest moment as a mother, but one that met with laughter from Jess and confusion from his grandparents and aunt.
My mother asked, “What does that have to do with dyslexia?”
My sister said, “Dyslexia is basically when you see and write letters backwards, right?” My father (a psychologist himself) replies, “Yeah, and the words look like they are jumping around on the page.”
This is a misunderstanding of dyslexia that I often hear non-clinicians and people unfamiliar with the condition purport. Based on outdated information, it fails to appreciate that dyslexia is a language-based learning disability that affects far more than the association of letters and sounds, though that very deficit is at its center.
Here is the remarkable part of the story, as I prepared to set them all straight as to the nature of dyslexia as we now understand it, Jess (the 10-year-old), chimed in. “That’s not right. I have dyslexia and I don’t do that [write letters backward].” Well, as you can imagine, that got everyone’s attention. Jess went on to explain that he has trouble with reading, but not just reading. He can’t always find the words he needs to express himself, he has trouble remembering things people say to him, it is hard for him to understand a concept or sequence described in a purely verbal way without benefit of a context or visual reference. The words he did this with were more basic and perhaps, quite frankly, more eloquent for they reflected his actual experience. He then went on to explain that the parts of his brain that process the language he encounters when reading are different than the parts the rest of us non-dyslexics use. He pointed to his head, “my brain uses this part and this part and your brain uses this part on the other side.” He used a visual aid and everything!
The conversation, as you might imagine as a parent, then shifted away from the dyslexia itself to Jess’ ability to explain it. We call this self-advocacy: one’s ability to articulate how they function so as to get what they need to function well.
As the parent of a child with a learning disability you have probably learned how to advocate for your son or daughter. You have worked to educate teachers about your child’s learning style and concomitant needs. You have explained his or her strengths and weaknesses to your friends and family, articulated the functional impact of his learning disability to your school district, intermediate unit, or insurance company in order to secure the services he or she needs to thrive. Perhaps you have even hired a professional advocate to fight on your child’s behalf. You have seen, first hand, the benefits advocacy by an adult on behalf of a child can reap.
So imagine how profound your child’s ability to advocate for him or herself can be. Within the classroom, it allows her to tell the teacher when she does not understand something so that the teacher has the opportunity to explain it in a way your child does understand. She can ask for more time to finish a test or reading assignment when she needs it without feeling embarrassed about that need. It enables her to negotiate use of technology in the classroom so that she can write more clearly (or legibly), or in a more-timely manner, or go back and add to her work once her initial draft is complete.
How does the ability to self-advocate develop?
Not by chance, I assure you. Jess’ explanation of dyslexia was the result of years of conversation about dyslexia in general and its specific impact on him, both the positive and the challenging. Learning about other people with the disorder, particularly famous ones like actors and athletes helped normalize his impression of dyslexics so that he sees himself as being in very good company. Each time we encounter another famous person who identifies as dyslexic, Jess’ community grows.
Herein lies the force of an accurate diagnosis. Vocabulary is a very powerful thing. From identification of a learning disability, comes understanding and a sense of being able to manage and even master the challenges it brings.
The first step toward raising a child who can advocate for himself comes from letting him know the nature of his reading difficulty. The second is giving it a name. Time and time again I see students who are relieved to learn that there is a name to explain why reading is hard for them. Giving a child the facts about dyslexia gives her power to understand it and to regard it as a part of who she is rather than something that is wrong with her. It is this latter belief that children come to possess when they are in the absence of accurate and factual information about why learning is hard. The third ingredient is being positive while working and speaking with your child about dyslexia. Though reading is hard for him as may be verbal expression or tasks that rely on working memory, he may possess remarkable creativity, outside the box thinking, or originality. The fourth is recognizing that this is not one but many, many conversations over many years. What a first grader can understand and articulate about how she learns is enhanced by what a fourth grader can understand and that even more so in seventh, ninth, and eleventh grade.
So, as I always say, keep on talking with your child. And remember, make sure you are always listening too!
Jennifer Jackson Holden, Psy.D. is managing director of the Paoli, Pennsylvania office of the Center for Psychological Services.