One of the most difficult parts of being a Speech-Language Therapist is telling parents that their child has a disorder. Every time I score an assessment and the results are below the 25th percentile (in the below average...poor...very poor ranges), I feel a little heavy-hearted. "Now I have to tell the parents that their child has dyslexia," I think to myself. Never a fun conversation. But then I think, "Now the parents have to tell their child that he/she has dyslexia. Probably a harder conversation."
Admittedly, I am an SLP who diagnoses disorders of relatively mild life-impact compared to diagnoses of intellectual disability or terminal illness. However, while I acknowledge that there are worse diagnoses, let us not diminish what it means to have dyslexia. It means a life of difficulty when engaging with written language (be it reading or writing). The entirety of academics is more strenuous for the student with dyslexia. Here is what students express to us:
When a chemistry teacher gives a killer exam, I not only have to worry about understanding and remembering the challenging content on the test, but also reading/decoding the questions and then being able to write a response with proper spelling. Tracking across sounds is difficult, so I try to visually memorize what every word looks like...but there are too many words, so I eventually just stop reading because it hurts my brain to try. I claim I hate to read, but I've never actually been able to read with any amount of accuracy. I've never been able to experience reading as a pastime, because it is so incredibly effortful, that the time doesn't pass, it drags. Writing isn't a habitual skill, it's like trying to write in ancient Aramaic; everyone else is scribbling quickly and easily, and I'm holding my pencil like, "You guys...this is ancient Aramaic. It'll take me 45 minutes to try to write one sentence." So I hate writing too. I routinely wonder if I am stupid, because how could I not be, when interacting with text is such a nightmare for me, but appears so natural for everyone else?
Not every child with dyslexia experiences the level of severity described above. In fact, while dyslexia cannot be cured per se, language skills can certainly improve and become more automatic with consistent therapy and practice. But the fact remains that dyslexia is a difficult beast to battle. And many parents have expressed dread at the prospect of telling their child that he or she is atypical.
Both Rita and I have found that fully educating a child about their diagnosis leads to better outcomes. Progress significantly improves if the child understands that their brain is working in inefficient ways for processing language, and that they need to work hard to help their brain learn to be more efficient so reading and writing become easier. We have actually found that many children, upon learning that they have dyslexia, are relieved to have a name for what they've been experiencing. Their secret fear is that they are stupid, but now they have a reason for all the difficulty they've faced! I am always very intentional about explaining dyslexia as separate from intelligence. A person with dyslexia can have normal to extremely high intelligence, and still be dyslexic. Dyslexia affects the reading and writing brain; it is a difficulty with phonological processing and working memory for language. It is not a cognitive disorder. If a child really knows and understands this distinction, he or she may receive the news gratefully. One parent reported to me that their child took the news so well, she made up a song about her dyslexia! It can be extremely comforting to know that one no longer has to pretend—that family and teachers understand.
While not every child reacts with such positive acceptance, it is important to keep explaining their struggle in terms of language processing, while continuing to distinguish between dyslexia and intelligence—you might be surprised at how often your child needs to hear this. Praise them for their ideas, humor, and other talents. Do not let the term dyslexia become taboo, the big D-WORD. Use if often, casually, and without shame, because it is nothing to be ashamed of. After all, dyslexia shouldn't define children, but it has such a significant impact on their learning experience that it needs to be acknowledged.
~ Moira
