To Read Or Not To Read
A December 30th New York Times magazine article, "Listening to Braille," about how the electronic age and its new media forms—such as software programs that read newspaper articles and books aloud via synthesized voices—among the visually impaired has changed the learning and use of braille got me to thinking about reading and literacy more generally. This is a topic constantly on Jim' and my minds as Charlie, at the age of 12 1/2 and with instruction in numerous reading curricula, does not read; and, as reading is something that Jim and I are both overly adept in, having both taught ourselves to read at the age of 4. Charlie is surrounded by books in our home and has always had many of his own.
Reading remains a goal on Charlie's IEP, with the emphasis on the "functional" side of reading: Labels, signs, and the like. As I'm writing this, it's occurred to me that it's been some time since we read regularly to Charlie. He was never one to sit still while reading storybooks though we did a fair amount of this when he was younger. As Charlie got older, much more effort was required to get Charlie to sit and listen, to the point that "read a book" had become an activity with not very pleasant associations. Reading is simply one of my favorite things to do (I often think I learned a number of other languages to expand my reading horizons) and turning it into a big chore seemed not only unwise, but just not the best way to proceed to stoke Charlie's interest in the written word.
Because, despite numerous setbacks and a constant report of "minimal progress" in reading for Charlie, we're never going to give up thinking that he might learn or that he might well be able to read much more than he seems able to. Though, that said, it's also fine if Charlie is ever unable to read more than a few words. We'd be the last people to say that reading is not essential and important, but our experience with Charlie has made me aware of how one can manage to get by in the world without reading. Charlie can certainly navigate his way through a grocery, convenience or other store, and most things (in this age of marketing and packaging) are clearly packaged, with pictures, to reveal their contents. Charlie still doesn't seem to recognize the words "men" vs. "women" or the signs for each gender on public restrooms, but I'm thinking that's the kind of learning that he'll come to in time. Due to the extent of Charlie's needs, it's very unlikely that he'll go anywhere in public without staff of some sort: If he's able to keep track one day of, for instance, his finances (with a calculator), I'm again quite that he'll have, and will need to have, assistance.
And just as Charlie in effect dealt with the blister on his lip on his own—crawling into his bed and smooshing his face on it till the thing burst, huge relief—so he's figured out ways to get by without being able to read, and without our being fully aware of the extent that he's figuring such out. I always try to point out the numbers and signs in the supermarket but I'm not sure if Charlie can figure out which words I'm pointing out, supermarkets are overglutted with visual stimuli! (Not to mention other stimuli.)
Jim and I spend a fair amount of our time reading and Charlie's lack of interest in such, and in anything having to do with extended streams of words (like books on CD), and in anything involving the extended use of his eyes, means that we're all often hunting around for leisure activities. One reason I think Charlie has been liking to watch YouTube videos is that these are usually only a few, and not more than ten, minutes long, and it generally seems taxing for him to look at visual stimuli for long periods of time. His vision is 20/20 (as far as the eye doctor can tell); since he was a baby, Charlie has tilted his head and looked out of the corners of his eyes when he's trying to look more closely at something.
From watching, and living with, Charlie, it's seemed more and more to us that it's the case that words and language are not the medium he's most comfortable with and drawn to. It's rather shapes and colors and sounds and, perhaps, textures, that Charlie seems inclined towards and that, we're inclined to think, he thinks in.
The New York Times magazine article notes:
Learning to read is so entwined in the normal course of child development that it is easy to assume that our brains are naturally wired for print literacy. But humans have been reading for fewer than 6,000 years (and literacy has been widespread for no more than a century and a half). The activity of reading itself alters the anatomy of the brain. In a report released in 2009 in the journal Nature, the neuroscientist Manuel Carreiras studies illiterate former guerrillas in Colombia who, after years of combat, had abandoned their weapons, left the jungle and rejoined civilization. Carreiras compares 20 adults who had recently completed a literacy program with 22 people who had not yet begun it. In M.R.I. scans of their brains, the newly literate subjects showed more gray matter in their angular gyri, an area crucial for language processing, and more white matter in part of the corpus callosum, which links the two hemispheres. Deficiencies in these regions were previously observed in dyslexics, and the study suggests that those brain patterns weren’t the cause of their illiteracy, as had been hypothesized, but a result.
It's possible to be literate—to be able to use language to write and to be knowledgeable about literature and much more—without being able to use a writing system.
Again, in writing about accepting Charlie's challenges in learning to read, I'm not trying to downplay the importance, the essentialness, of reading. It's a constant theme of mine—and so one worthwhile to reiterate at the start of a new year and the start of school for Charlie in this new year—that life with Charlie has been about learning to communicate, to understand, to be in ways that are different, and often profoundly so.
Sure it's quite a challenge for two hyper-verbal adults to raise a minimally-verbal son and yet this very scenario—the fact of our daily lives—gives the straightest story about what you let go of in parenting a child like Charlie, and what you have to gain.