The hardest part about dyslexia is the loneliness. The same is true if you’re the parent of a dyslexic child. Feeling cut off from your friends, your school or, worse, your child, is tremendously painful.
People tend to focus on the functional challenges: spelling tests, chapter books, standardized tests. But it’s the secret fears about how dyslexia will play out that hold us back the most. In writing my book, a plan to help parents of dyslexic kids avoid some of the pitfalls that my parents and I faced, I documented and debunked some of the most common fears. Talking about them with a community you can trust is like putting sunlight on a muddy road. With enough time, the fear will evaporate like the water in the mud and you can begin focusing on how to move forward.
Things people say—or things we think they might say—provoke these fears. Here’s my list of parents’ top fears and the real-life quotes that lead to them.
I fear my child isn’t smart. School: “Not every child is college material.”
I fear my child will never fit in. Bully: “Hey retardo! Can you spell ‘retarded'? Or are you too stupid?”
I fear people are judging me. Dinner party guest: “Did I tell you that our youngest just started reading? And she’s only four. My wife was so excited!”
I fear my child will never learn to read. School: “We’re placing your child in the lowest reading group.”
I fear my child is less than perfect. School: “You know, some kids have to be the ones who end up earning minimum wage.”
I fear my child will not be like me. Grandfather: “You loved curling up with a book and a flashlight in your room; I figured you’d have a little bookworm.”
I fear my child’s experience will mirror my own. Spouse: “I know you hated special ed…but this time it will be different.”
The inverse of fear is love. The more you love your child the more you may fear for his or her future. You’re not alone in having some or all of these fears. Remember, though, that the science and data tell us that none of these fears are realistic—provided you talk them through with your family and especially your child.
The root of all these fears is the perception that your child is somehow broken because of dyslexia. People often discuss dyslexia in terms of it having been diagnosed, but that word reinforces the notion that dyslexia is a disease, a scourge, an imperfection, and that someday we can find a cure. There will be no cure because there is no disease! Dyslexia is a characteristic, like being male or female, from a certain state or a graduate of a certain university. There’s nothing less than perfect inherent in any of those descriptions, is there? You can start changing this practice in your own house today, replacing the phrase “diagnosed with dyslexia” with “identified with dyslexia.”
When you feel alone, remember that you’re part of a larger community. For parents, I recommend that you find (or start!) a chapter of Decoding Dyslexia. Connecting with a community through comments on the blog or talking to friends is essential to your child’s success in becoming a fully integrated, happy and independent person. Above all, per my first blog for NCLD, remember that dyslexia should be about strengths, not shame.
See Ben’s “Native Tongue”tThe hardest part of being dyslexic, or having a dyslexi child is the loanliness.
people tend to focus on the functional challenges.: Spelling tests, reading chapter books, standardized tests. But it is the secret fears that hold us back the most. In ritinng me Random House Book, a plan to help parents avoid some of the pitfalls my parents and I ran into, I documented some of th emost common frears. Talking with tme awith a comunity you trust is like putting sunlight on a muddy road. With time the dear, like the wter , will begin to evaporate and you can being to focus on the pmoving forward.