My son was recently diagnosed with dyslexia. This came after I'd spent years homeschooling him and trying every reading method that I could get my hands on. At first I thought the problem was him, that he wasn't trying hard enough because he preferred to play with his toys than to do school with mommy. Then, I thought it was me, and that I was just not a good enough teacher. Finally, I became convinced that I just needed to find the right curriculum.
One day last year, we were doing school and it was like I was seeing him for the first time. Something was wrong and it wasn't me, it wasn't him, and it wasn't the curriculum. He could read on grade level, and he had excellent comprehension, but it was devastatingly difficult for him. To read an entire paragraph he had to hit himself, pinch himself, and would usually cry out, but only after first exhibiting reluctance and anger.
In my house, dyslexia looks like a bad little boy. It looks like ADD. It does not look like a bonafide disorder. When it was first recommended to me that I take him in to get tested for dyslexia, I was taken aback to discover that neither my insurance, or our local school district, recognized it as its own individual disorder. We would have to pay out of pocket to save our son from illiteracy.
Thankfully, we can. We're not rich, but we have investments and excellent credit. We could lose our house paying for his treatments, but we can still pay. For some families, the cost may as well be in the millions as opposed to the thousands. Some families would never, ever be able to come up with the hourly rate required to get their children the help that they need.
I tend to feel sorry for myself. When bad things happen, I often look to the sky and wonder what I've done to deserve the most recent calamity that's come into my life. The older I get, the more that I realize it's not all about me. Nevertheless, when my son received his diagnosis I fell into a sad and fear-filled silence. For days I wanted to ask why this had happened to my boy. Why was such a sweet, smart child afflicted with a disorder that makes most people believe that they're dumb.
As I was having these thoughts, I was also thinking about the best way to build the board for Booker's Place, the new non-profit that I'm planning to launch this year, with the help of Lynn Roer from Ogilvy and Mather.
There are two grown men in my family who cannot read. Booker was also illiterate, that makes three (one of them is a blood relative of Booker's). There are some who believe that dyslexia is genetic. I have to wonder if it runs in my family? I read here that African-American dyslexics are more likely to be misdiagnosed as being mildly mentally disabled than their white counterparts.
Are dyslexics whose skin is a little darker and whose families have little money, less likely to get a proper diagnosis? The doctor who diagnosed my son charged $190 an hour. They said there was a chance insurance may not cover it. The testing lasted four hours. How many families can afford that?
The timing of all of this - getting the diagnosis while starting Booker's Place, has made me wonder if I can incorporate dyslexia treatment into the free services we provide. School supplies are great and necessary, we will still do that. Learning to read, in this society however, is like learning to breathe. It's all but impossible to thrive without it.
I am finding myself having another wildest dream. What if I could hire a dyslexia specialist or a reading specialist to work in a city and travel between Booker's Place locations, providing specialized reading programs to underprivileged kids? Maybe they could even make house calls. It would be really expensive, but it would change the world, one struggling reader at a time. It may also be what Booker Wright would do.