To Read Or Not To Read

Charlie helping out at the grocery store  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.

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Comments
14 Responses to “To Read Or Not To Read”
  1. Jennifer says:

    Sometimes things just come when they come.
    One of my brother’s teachers in high school said he’d never subtract (despite learning how, using a chart, in middle school, but that’s another saga).
    And, yet, while he and I were at Disney World last week, he regularly figured out what time it was at home by — you guessed it — subtracting 3 hours from whatever time it was.

  2. silimom says:

    One thing I’ve done with our kids over the years is use the closed captioning on the television set. It works with their dvd’s too.
    They are exposed to the words yet the audio is there so they don’t need to feel like they have to do all the work themselves (like listening to books on tape, which I’ve done with my kids as well).

  3. Ecki says:

    How do you teach a nonverbal, noncompliant child to read?
    I think Kayla would be able to be taught to read (she also hates being read to, that whole lack of joint attention thing). But she is SO noncompliant when it comes to SHOWING what she knows, that we never know for sure if her lack of response to questions because she doesn’t understand or if she just doesn’t want to show us. VERY FRUSTRATING. Sometimes I’ll catch her with one of her electronic alphabet toys answering all the questions (show me the letter, what letter makes this sound, type questions) perfectly until she sees me watching her.

  4. Louise says:

    How often does Charlie have his vision tested? How can the optometrist tell what his visual acuity is?

  5. autismvox says:

    Charlie last had it tested in the past couple of years, must check—he can read the numbers and some letters on an eye chart. The optometrist specialized in special needs kids and he did well with her.
    Ecki, I think some of the same difficulties getting Charlie to _show_ what he knows are going on with us! He just shows no interest in reading, but then I wonder if he’s just bored bored bored with any of the books that “seem” to be at or even “beyond” his level—all are picture books.

  6. Matt has never had a vision or eye test, Nick had them last week, right eye is 20/30 and both have had audiology tests when younger in the booth – Matt on my lap.
    Matt has never been interested in listening to me reading a book, yet in K-1 there was a retired male special ed teacher that did sub often and feedback was that Matt loved the way he read books.

  7. Matt has never had a vision or eye test, Nick had them last week, right eye is 20/30 and both have had audiology tests when younger in the booth – Matt on my lap.
    Matt has never been interested in listening to me reading a book, yet in K-1 there was a retired male special ed teacher that did sub often and feedback was that Matt loved the way he read books.

  8. Jill says:

    Several of my students became interested in reading when they were given a selection of books about their favorite topic. In one case it was sharks and for another boy it was weather, notably tornadoes.
    The weather-obsessed kid could talk all day about tornadoes in a ritualized sort of way: had I ever been in a tornado? Did i know anyone who had been in a tornado? and so on.
    I found books added a new dimension to their favorite topics with pictures and “fun facts” and a host of statistics that they could quote at length.
    In Charlie’s case, since he’s so tactile, he might like the beautifully made pop-up books, some of which have materials in different textures and sound chips that reproduce the appropriate noises that go with the story line.
    I’ve given pop-up books about pirates and dinosaurs to my seven-year-old nephew and he really enjoys them.

  9. autismvox says:

    Charlie had a book-ripping phase and that was when we stopped getting him pop-up books—thank you, am going to try one again.
    Charlie definitely listened to us reading him books more when he was younger, though it was never a favored activity. He did like ‘Chicka Chicka Boom Boom,’ which a teacher (a wonderful preschool teacher he had for a year) introduced him too.

  10. autismvox says:

    Charlie had a book-ripping phase and that was when we stopped getting him pop-up books—thank you, am going to try one again.
    Charlie definitely listened to us reading him books more when he was younger, though it was never a favored activity. He did like ‘Chicka Chicka Boom Boom,’ which a teacher (a wonderful preschool teacher he had for a year) introduced him too.

  11. Justthisguy says:

    As an hopeless bookworm who (really) would rather read than eat, I do sympathize with you.
    Does Charlie know his letters, and associate them with the sounds of the English language? Does he know those things, and not care about them enough to spend his valuable time on them? (I’m serious!)
    I mean, I could see how swimming would be more fun. Though an autie, he’s also a boy.

  12. Justthisguy says:

    As an hopeless bookworm who (really) would rather read than eat, I do sympathize with you.
    Does Charlie know his letters, and associate them with the sounds of the English language? Does he know those things, and not care about them enough to spend his valuable time on them? (I’m serious!)
    I mean, I could see how swimming would be more fun. Though an autie, he’s also a boy.

  13. Regina says:

    When my daughter was really young, she loved books to the point of carrying them around everywhere and looking at the pictures lovingly and intensely. The trouble was that having noticed this, the adults, including me, glommed on to them either as something to be “taught” for listening/circle/reading skills or used as “reinforcers”. On reflection we were just being a little too greedy; the skill would have been more than difficult because she had not yet mastered certain prerequisites, and we did not have particularly good skills in trying to “teach reading” either. Commandeering the books and putting on these demands did not achieve early literacy – what we did was kill a golden goose – the association with books became aversive and the combo of book+adult = throw the book from yourself as far as you could and run away if an adult approached with a book. Fortunately we had one time of day where we had never made demands except to just read a story short and sweet, so that was able to continue. I’m not sure where we would be if that had also gone south. I still kick myself.
    It was several years before I was able to approach learning to read again and went at it much more intelligently and systematically with a good reading curriculum that also included concurrent writing and activities. It was still rough and slow, gentle going requiring much individualized tailoring at first because of that past history, but in a relatively short time things picked up. I would have backed off and reassessed if they had not. My daughter is still not a fluent reader, but she appears to enjoy the activity of reading, uses the textual cues to help her with other learning and does not seem to get especially anxious when new material is introduced.
    Now she is willing and requests reading stories of her choosing together, and gets kind of indignant when I read something to her that she feels capable of reading to me. Kind of understandable, really.
    No big statement, just reflecting on our own experience.

  14. Regina says:

    When my daughter was really young, she loved books to the point of carrying them around everywhere and looking at the pictures lovingly and intensely. The trouble was that having noticed this, the adults, including me, glommed on to them either as something to be “taught” for listening/circle/reading skills or used as “reinforcers”. On reflection we were just being a little too greedy; the skill would have been more than difficult because she had not yet mastered certain prerequisites, and we did not have particularly good skills in trying to “teach reading” either. Commandeering the books and putting on these demands did not achieve early literacy – what we did was kill a golden goose – the association with books became aversive and the combo of book+adult = throw the book from yourself as far as you could and run away if an adult approached with a book. Fortunately we had one time of day where we had never made demands except to just read a story short and sweet, so that was able to continue. I’m not sure where we would be if that had also gone south. I still kick myself.
    It was several years before I was able to approach learning to read again and went at it much more intelligently and systematically with a good reading curriculum that also included concurrent writing and activities. It was still rough and slow, gentle going requiring much individualized tailoring at first because of that past history, but in a relatively short time things picked up. I would have backed off and reassessed if they had not. My daughter is still not a fluent reader, but she appears to enjoy the activity of reading, uses the textual cues to help her with other learning and does not seem to get especially anxious when new material is introduced.
    Now she is willing and requests reading stories of her choosing together, and gets kind of indignant when I read something to her that she feels capable of reading to me. Kind of understandable, really.
    No big statement, just reflecting on our own experience.

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