Jamie’s trip to Syracuse, part two
So here’s what happened when Jamie and I sat down with Rosemary and her computer keyboard. First we etched a pentangle into the ground, then we set it on fire. . . .
No, not really! I am only kidding about the pentangle. And the fire. But Jamie and I did sit down.
After we’d done introductions and talked a bit about sharks and Australia and other things that Jamie’s familiar with, Rosemary showed Jamie how the word-recognition software works. Once he typed a letter, the screen offered him six likely choices; if his word was among them, he would press the number for the word, and if it wasn’t, he would go on and type the next letter until his word appeared. And so on. It took him a few minutes to get the hang of this. The software was the magic kind that can talk, so each time Jamie completed a word, he was able to hear it spoken by the computer.
And then things got interesting.
Rosemary showed Jamie a picture and asked him to tell a story about it. “Oboy,” I thought to myself. “This is precisely what Jamie can’t do.” Now, as exceptionally dedicated readers of this blog may know, I have misunderestimated Jamie before, so I try to be cautious before I think thoughts like “this is something he can’t do.” But I do know that narrative is something about which he has often expressed disappointment and frustration. He lives with people who tell stories fluently, one of whom often tells stories about him, and he knows he doesn’t have that kind of fluency. Accordingly, when you ask him to tell about X or Y, he will turn to Nick or to Janet or to me and say, “you tell.” Obviously, this strategy doesn’t work when he’s being asked about experiences only he knows about, and I’ve spoken to him about the Other Minds Problem, just to see if he understands that other people don’t know the things he knows and don’t have the memories he has. (More specifically: I’ve asked him the classic Other Minds Problem question of what would happen if you showed someone a rabbit under a hat, then asked them to leave the room, then switched the rabbit for a mouse, then asked them to come back in. Would they believe that a rabbit was under the hat, or a mouse? At first Jamie said “mouse,” so I repeated the question more carefully and explained that the person who left the room knows nothing about the switch, whereupon he said “rabbit.” Results: inconclusive!) “And that’s why we’d love to hear your stories,” I always say. “Because we’d love to hear what you think about everything.”
The picture showed a kangaroo, a joey, and a man on a horse. Jamie began to type. Rosemary guided his right elbow; this is one of the things that makes FC controversial, because it introduces the ouija-board question. But from what I could see, she wasn’t leading him to pick one letter or another. She did alert him to when selections of words became available on the screen, and she made sure that his elbow was level with his forearm and that his index finger was straight. In other words, she was facilitating. But she wasn’t pushing his arm all over the keyboard.
Jamie, with Rosemary’s help, wrote:
The horse is driving a Joey away from its mother.
“Hmmmm,” I hmmmed. The sentence was plausible enough, but I questioned the word “driving.” I’d never heard Jamie use the word before, and yet I knew it wasn’t out of his reach.
“Very good, Jamie,” Rosemary said, and I thought they’d move on to another picture. Instead, Rosemary proceeded to ask Jamie why the horse was driving the joey away from its mother. Back to the keyboard:
The horse is driving a Joey away from its mother the man wanted the Joey for a pet.
Well, surely you recall that passage from E. M. Forster’s Aspects of the Novel: “‘The king died and then the queen died’ is a story,” Forster writes. “‘The king died and then the queen died of grief’ is a plot.” So Jamie had already progressed to plot, leaving out the “because” between “mother” and “the man.” (And “Joey” was capitalized twice because the word-recognition program simply repeated the word once Jamie hit “j,” on the theory that a user would be likely to use the same j-word twice.)
Once again, Rosemary praised Jamie—but then she said, “ah, but now I have a question, Jamie.” Jamie turned his full attention to her. “Is it right for the man to do this?”
“He understands the concept of ‘fair,’” I interjected. Thanks once again to Harry Potter and the many miscarriages of justice depicted therein, from Sirius Black’s conviction to Dolores Umbridge’s brutal punishments of Harry, Jamie also knows the concept of “innocence.” I’ve also glossed the line, “he’s crying out that he was framed,” from Dylan’s “I Shall Be Released,” by reference to Sirius Black. OK, so it’s not Rawls’ Theory of Justice. Give me a break. Harry Potter has the distinct advantage of being narrative.
“Is it fair for the man to drive the joey away from its mother?” asked Rosemary.
Jamie, with her guidance, went back to the keyboard:
I think we should leave wild animals in the wild.
“Oh, very good, very good. Now that raises a very good question, Jamie,” Rosemary said. “What do you think about zoos? Is it all right to capture animals and put them in the zoo?”
I sat on my hands for this one. As you know, Jamie has been to zoos all over the Western world. He always pays attention during the nature shows, and he understands that some animals are endangered by human predators and by environmental change. He is so down with the argument that sharks have more to fear from us than we do from them, and he knows which species are not harmful to humans. And he knows how zoos get their animals and care for them. So I kept as quiet as a rabbit or a mouse. And here’s what he produced:
Guess you are right. The think ing thing to do is to keep just the minimum number of animals in zoos so we find out about them without having to chase them.
Well, now. The think ing thing to do? The phrase made me wonder whether, in fact, Jamie had such a sentence fully-formed in mentalese before he began typing, or whether he’d made it up (again, with Rosemary at his elbow) on the fly, as he chose among his options afforded him by the computer. It certainly didn’t sound like the Jamie I knew, but then, why would it? And then just the minimum number of animals. My spider sense went off at that one, too. It sounded as if Jamie had an entire position paper on animal rights and species preservation at his fingertips, just waiting for FC to come along and dig it out.
I asked him about this sentence later, after the session was over. “What were you saying about animals in zoos?”
“They would be safe,” Jamie replied. “They would survive.”
OK, so he was certainly think ing something along those lines! These two sentences alone were more than I’d ever heard him say on the subject (and that was his first conversational use of “survive,” so far as I know), so Rosemary had obviously gotten him going, and he obviously had something to say. I pressed on. “But you said we should just keep the ‘minimum number’ in zoos. Do you know what ‘minimum’ means?”
“Tell me,” Jamie said—though he says this even when he knows the answer.
“It means ‘the least amount.’ Do you want to keep just the least amount of animals in zoos?”
“We could have lots of animals in zoos,” Jamie replied. “And take care of them.”
Very well, so it’s possible that he meant we should keep just the maximum number in zoos. So maybe Rosemary led him on a bit—or maybe he simply chose one of the available words from the program, without being quite sure what it meant.
I think the same thing happened with the next picture, which showed a small girl, a big ape, and the Empire State Building. Jamie’s response to this picture was:
The little girl really got scared when doing her school excursion they went to see king kong.
Again, the thing that jumps out is “excursion.” Jamie knows the phrases “school trip” and “field trip,” but “excursion” didn’t sound like it was in Jamie’s repertoire. But then again, maybe he was just choosing “excursion” once it popped up on the screen along with words like “exercise” and “experiment.” “Doing her school excursion” ain’t exactly kosher in terms of usage, after all, and Jamie’s punctuation and capitalization were a bit off too. So it wasn’t as if he’d produced the Gettysburg Address. But Jamie is, in fact, fascinated with King Kong (especially the scene involving what we now call “the islanders,” Scott Eric Kaufmann, white courtesy phone!), and the bulk of the sentence is altogether plausible.
Jamie and Rosemary produced three more sentences. Two were addressed directly to Rosemary:
You get people with down syndrome typing how can I type better than I do.
I think you know the right way to type.
Possibly a bit suspicious, sure, insofar as they serve as advertisements for the process under way, but once again, I believe they’re within Jamie’s range. When he was in sixth grade, he had to type sentences about his spelling words, and though he liked it, the amount of time required for his hunting-and-pecking always discouraged him. With this program, by contrast, he was typing one or two letters, a number, and shazam! Words appeared on the screen and were magically spoken aloud. And the more Jamie typed, the faster and more fluent he got. I was sure of this much: he was really enjoying himself.
And then, just as the hour was ending, Rosemary asked him if there was anything he’d like to say about current affairs. The answer:
Israel is not very happy with Lebanon and they have been shelling Beirut.
I didn’t believe that one for a moment.
Now, I might have been underestimating Jamie again, but still, this one looked fishy to me. He’d never uttered a word like this in his life. I mentioned it to Janet when I called her that night, and she said that maybe, just maybe he and his teachers had said something about Israel and Lebanon in summer school. But I’d just grilled him about that sentence after the session was over—lightly, mind you, with a splash of olive oil and butter. In response, Jamie said something about war in Iraq, and asked me to tell about Israel. Jamie knows about war in Iraq, and he knows that US soldiers are there, even if, like most of the American public, he isn’t entirely sure why. Jamie also knows where Israel and Lebanon are; he’s remarkably good at geography (way better than most of his fellow citizens) and knows most of the Middle East. But “shelling”? “shelling Beirut”? Rosemary, I thought, had done a bit of overreaching there. Any FC skeptics watching that sentence appear would surely remain FC skeptics.
But then another thought occurred to me: what if that sentence had been wholly Rosemary’s, and she was simply showing Jamie how to produce such sentences with the help of the word-recognition program? Then it wouldn’t be a question of whether Jamie had had such a mental sentence fully formed in his head, waiting to be unlocked by FC; it would be a question of whether Jamie could be induced to see himself as a producer of such a sentence. In other words, even in the worst-case scenario, maybe Rosemary wasn’t ventriloquizing Jamie so much as showing him what the program—and what he—could do.
It was a thought. I juggled it with a bunch of other thoughts as Jamie and I drove around the campus area, looking for Indian food and movies and our hotel. Among those other thoughts was the reflection that whatever the merits of FC, Rosemary had worked with Jamie generously and solicitously, and had asked him some great questions.
Once we checked in at the Anton Pannekoek Hotel and Council Communist Center, I asked Jamie again about Israel, Lebanon, and animals in zoos. He said, good-naturedly, “Michael, you asked me that already.” True enough, so I simply asked him if he’d had a good time and if he’d liked Rosemary. To this I received two very enthusiastic yeses.
And then the first of two curious things happened. We tried to open the door to our room, but the keycard wouldn’t work. Frustrated (we were tired, and we’d waited forever for an elevator), I informed Jamie that we would have to return to the lobby for another key. He started to fuss and complain, which was normal enough, and then, surprisingly, he asked, “what if they don’t let us back in?”
Quoi? I’d expected him to be a bit fussy, since he was weary, but I hadn’t expected this.
“You mean you’re worried that they won’t give another key?”
“Yes,” Jamie said. “What if they don’t give us any key?”
I assured him that that wouldn’t happen, but I noted that he’d been a bit more articulate about his worries than he usually is.
Still, it wasn’t a major breakthrough or anything. He just seemed a bit more confident in expressing himself, that’s all. So I put that thought next to all the others.
And then a few hours later, at dinner, he started playing his “animal hangman” game with me. In this game, he draws X number of blank spaces (lately, he’s gotten to the point at which he can spell the words to himself mentally, visualize them, and draw the appropriate number of spaces—this is all quite new and exciting), and I have to guess letters, and so forth. Mind you, he doesn’t go for things like “cat” and “pig”; he prefers animals like “Port Jackson shark” and “bull elephant seal.” Real challenges, both for him and for me. Suddenly, he interrupted the game to ask me a question.
“Michael,” he said, “how do you spell ‘composition’?”
Did I hear that right? “Uh,” I stammered. “Here, let me write it out.” As I did, Jamie stopped me. “No, not composition,” he said. ”Competition.”
“Oh! Sorry.” I wrote out “competition.”
“Thank you,” Jamie said. “How do you spell ‘delusion’?”
At this I practically spat up my saag paneer. He knows the word “delusional,” as it happens, because of Ferdinand the Duck’s misguided and futile effort to persuade Babe the Pig not to pursue the animals captured in the raid in Babe 2: Pig in the City (a brilliant and vastly underrated film):
Pig, you are unraveling! A, they are long gone; B, they were not nice people; C is for kamikaze, and D is for delusional, which is what you are in the head. You’re just a little pig in the big city. What can you do? What can anybody do? Why even try?
It’s a great speech. Jamie and I rehearse it all the time. But he’d never, never asked me how to spell “delusion” before. Clearly, he was thinking hard about his session with Rosemary that afternoon, and clearly, in thinking of words like “competition” and “delusion,” he was thinking about words he’d feel more confident about writing if only he knew how to spell them.
Well, that decided things for me. I asked him if he’d like to get “the computer game” that Rosemary used, the Intellitalk 3, and he gave me a big thumbs up. And then we finished dinner, and off we went to see Monster House.
Now, I know this isn’t a definitive endorsement of Facilitated Communication. But it is a report that when Jamie worked with a word-recognition program and some friendly help from Rosemary, he was able to try out some unfamiliar words and then to think about how to write some complicated familiar ones. That, in turn, helped him to form more complex sentences on the screen than he can manage in daily speech. I’m sure that if Jamie didn’t have to spend so much time and energy worrying about how to spell the words he knows, he’d type and communicate more fluently than he does now. And why would I be so concerned about his typing, when his speech is reasonably intelligible and coherent? Because Jamie, unfortunately, not only has a little trouble vocalizing his words; he’s also burdened with laryngomalacia and oral-motor deficits and a father who speaks too quickly. The end result is that he’s often quite hard to understand. Thank goodness he has so much patience with us.
My tentative conclusion is this. For kids with expressive speech delays, there’s really nothing to be lost by checking out FC and seeing what kind of assistive technology might actually be of some assistance. The major controversies over FC are, I’m both sorry and relieved to say, largely irrelevant to Jamie: he can speak on his own; he says plenty of smart and insightful and surprising things even if he telescopes them into a few condensed words; he’s let us know, in various ways, that he thinks seriously about life and death (particularly the deaths of loved ones) and, lately, the Middle East: he wants to know what’s going on over there, and whether there could be bombs and rockets in Pennsylvania as well. Finally, of course, there will be no question of whether Janet or I will be guiding his fingers to the keys, so the ouija-board question—of whether the facilitator or the facilitatee is really doing the communicating—is moot.
I still don’t know what to say about FC with regard to people with severe and profound disabilities, or people seemingly incapable of communicating at all. But I still believe that too many people with disabilities are misdiagnosed as nonfunctioning and noncommunicative, and that, given our lousy track record of such misdiagnoses, we should place the burden of proof on anyone who declares that person X is incapable of communicating, and we should offer the benefit of the doubt (though not a free pass, mind you) to people who are willing to think otherwise.
And I’m definitely getting Jamie an Intellitalk 3.
I’m completely blown away by this post. I don’t have anything useful to say except, thank you for your generosity in sharing this.Posted by Ann Bartow on 08/24 at 10:31 AM
And thanks in return, Ann.Posted by Michael on 08/24 at 11:21 AM
Thank you for the reminder… I subscribe to the cultural “delusion” that day to day “competition” (career, sports) matters, and your posts repeatedly undercut that egoism.Posted by on 08/24 at 11:27 AM
Because Jamie, unfortunately, not only has a little trouble vocalizing his words; he’s also burdened with laryngomalacia and oral-motor deficits and a father who speaks too quickly. The end result is that he’s often quite hard to understand. Thank goodness he has so much patience with us.
Ever consider sign language? My children learned basic signs well before they could ever vocalize, thanks to their mother. Said mother works with children thought to be unable to communicate and swears that they learn to sign. The only problem, she says, is that people never consider teaching sign language to people who can hear.
It definitely sounds like the computer program was inspirational to Jamie, which is magnificent. When I spoke to the above-mentioned mother, who works with children who are constantly misunderestimated about their ability to communicate, about FC, her main concern was that it seemed like a system which could very easily be used to exploit hope. While I am not the least bit skeptical of yours and Jaime’s experience, I think that the hope-exploitation worry is valid.Posted by on 08/24 at 11:32 AM
Fascinating, thank you. My skepticism about FC is much diminished. Do you think that the potential for expanded vocabulary and growing confidence with words on the micro-scale might alleviate some of Jamie’s difficulty with narrative on the macro?
And I hope there’s Intellitalk-compatible blogging software out there…Posted by on 08/24 at 11:45 AM
Do you think that the potential for...
Asked and answered. Sorry. I had Forster in my eye.Posted by on 08/24 at 11:53 AM
Michael, I’m going to point several mothers to your blog. They need to read this.Posted by on 08/24 at 12:12 PM
I think (if I recall correctly from reading Michael’s book) that Jamie does know some sign language. I think what Michael is trying to accomplish is about helping Jamie learn to translate his thoughts into a coherent narrative, which is more about stimulating certain mental processes than it is strictly the mechanics of language.Posted by Bryan on 08/24 at 12:17 PM
This gadget is fascinating. Please do a follow-up once Jamie has been using the system without Ouiji-assist. I’m also interested in knowing what happens when Jamie wants to communicate something that isn’t available in the options presented and if that situation changes what he decides to communicate.Posted by Roxanne on 08/24 at 12:22 PM
Substitute a semantic interface for the Intellitalk 3’s spelling / number juju and you’ve got the next killer app, the next VisiCalc. Okay, that does sound a lot like Google™, especially the queries where Google™ offers to correct my spelling.
As usual Jamie’s curiousity facilitates my day.Posted by black dog barking on 08/24 at 12:33 PM
Hi Michael, this is an amazing post. There is a lot of work in cognitive science on what is called distributed cognition. The basic idea is that cognition is not in the head (so communicating is not the expression of fully formed sentences in mentalese), but occurs in loops among brain, body, and environment. The leading guy here is Andy Clark, whose latest book is Natural Born Cyborgs (Oxford UP, 2003). For Clark, humans have always thought in situations with cultural “scaffolding” as part of the loop, writing systems being only the most famous. Jamie’s experience with the “computer game,” seems to me to fit right into the situated cognition idea.Posted by John Protevi on 08/24 at 12:35 PM
Oops, I should have said “situated cognition” in the second sentence of number 11. “Distributed cognition” is close enough, but is mostly associated with Edwin Hutchins, Cognition in the Wild (MIT, 1995). Another name for the Clark school is the “embodied-embedded mind.”Posted by John Protevi on 08/24 at 12:38 PM
Yes, indeed, thank you.
The principle you end with is so important in any kind of care or teaching—never assume a deficiency, always provide opportunities to use new tools, do new things, grow.
John, is situated cognition compatible with Jerome Bruner’s work? I think he writes about our intelligence including all the tools, resources, and social networks that we have on hand to help us solve problems.
Professor, I now forgive you for liking Babe II.Posted by on 08/24 at 12:48 PM
Michael; what Ann said at the very top. Now I’ll read the rest of the comments.Posted by on 08/24 at 01:21 PM
I may be misremembering this (and I’m at work and can’t check), but weren’t you discussing the situation in Lebanon with Nick in the car on the way home from the airport, and wasn’t Jamie there?Posted by julia on 08/24 at 01:34 PM
MB wrote: “Maybe Rosemary wasn’t ventriloquizing Jamie so much as showing him what the program—and what he—could do.”
Did you ask her about this?Posted by on 08/24 at 01:39 PM
It sounds like FC is being confused with the computer program. FC usually refers to the method and this is the part scientists doubt (a good way to test it is to have the facilitator put on sound canceling headphones and a blinder so that they can only see the keyboard, while someone else asks the questions and to see whether the person’s responses are still logical. an even stricter test is one in which the participant and the facilitator each wear headphones but different questions are asked of each. in the typical study, using people without language--unlikely in jamie’s case--the resulting sentence has answered the facilitator’s question not the participant’s.) anyway, it’s great that you found the software, i’m just not sure if that should make you an FC advocate or an advocate of technological advancement. clearly the computer program is a good one for jamie and others like him. congrats on finding something that is so helpful for him.Posted by on 08/24 at 02:25 PM
The phrase made me wonder whether, in fact, Jamie had such a sentence fully-formed in mentalese before he began typing, or whether he’d made it up...as he chose among his options afforded him by the computer. It certainly didn’t sound like the Jamie I knew, but then, why would it?
I wonder to what extent FC can be discredited for producing sentences that weren’t likely to exist in mentalese in the first place. I know personally when using a word processor to write papers, comments, etc there’s a kind of collaboration between the interface and my “mind.” Obviously there are other ways for FC to be bogus, but if, say, James Merrill can compose Changing Light at Sandover using something like FC, and if, as John Protevi says, ordinary communication is “facilitated” with cultural scaffolding, how important is it whether the sentences were Jamie’s before the computer comes up with them, so long as he understands what’s been produced? It seems like you’re allowing the program plenty of latitude; it also seems right (at least for Jamie) to try the program without a facilitator. Thanks for a very interesting post. I hope it works out well.Posted by on 08/24 at 02:28 PM
"Anton Pannekoek Hotel?” You de Man!Posted by on 08/24 at 02:42 PM
Re #13: rm, sorry, but I don’t know Bruner’s work. But what you say is his principle is pretty much exactly what Clark and his buddies say.Posted by John Protevi on 08/24 at 02:47 PM
Ditto, ditto, etc., etc., if I may discuss a minor, irrelevant point, as is my wont, Babe, Pig in the City is a masterpiece, and the percecptive and mysterious mind of M. Berube has made my day!Posted by Pinko Punko on 08/24 at 02:48 PM
If Jaimie understands fairness, and he doesn’t feel that Rosemary is misrepresenting him; then that says alot. He knows that what’s being said is supposed to be coming from him?
A long time ago, I had a friend I scolded severely for ouija-board activity. She laughed, and said “of course it’s bullshit. But it’s fun to see what the group thinks.” I soon found myself sitting around a ouija-board. And it was a good time. Who’s to say that two brains talking out of one mouth is a bad thing? Even if Rosemary was influencing what Jaime was saying (which seems likely), that doesn’t neccissarily negate his influence.
Side note: I diagnose most people as noncommunicative - including myself.Posted by Central Content Publisher on 08/24 at 03:03 PM
I think Jan is right - the software could be very useful and the facilitating technique, not so much. The software does sound very cool - first in pulling up the right word without the child having to spell the whole thing (I like that in my Quicken program) and second for pulling up a different word that starts an interesting train of thought.Posted by on 08/24 at 04:13 PM
I may be misremembering this (and I’m at work and can’t check), but weren’t you discussing the situation in Lebanon with Nick in the car on the way home from the airport, and wasn’t Jamie there?
Pretty good memory, Julia. I’m on the road today and have only a minute or two to check in on the ol’ blog, but yes, Jamie was in the car for that discussion. He had his CD player and headphones on, though, so I’m not sure how much he caught, if anything. And I don’t think Nick’s brief recap of the news included anything about shelling Beirut . . . but who knows? It’s possible he might have heard the phrase somewhere.
Pat, Jan, John—I really can’t say how much of Jamie’s work was the result of facilitation, or how much he “knew” about what he was going to write before he started typing. But I do know that I learned enough to doubt people who say “FC is nonsense, Rosemary Crossley does FC, therefore Crossley’s work is nonsense.” There’s no question in my mind that she helped to jump-start something interesting in Jamie’s mind.
And I’ll ask Rosemary about that Israel/Lebanon sentence, too.
Bryan, you’re right about Jamie and sign language. But honestly, we should have followed up on that long ago. We merely taught him a few words to tide him over, and got him a few books. He proceeded to teach himself the sign alphabet and the signs for certain animals (bear, mouse, raccoon, pig, etc.—not bull elephant seal).Posted by Michael on 08/24 at 05:26 PM
I think Jan has a point, but I think that’s less relevant for Jamie than for extrapolating to the case of someone with no record of communication.
Has Jamie ever tried to e-mail Nick when at college?Posted by Sherman Dorn on 08/24 at 06:56 PM
I found this really interesting, Michael--both about the specific issues involved and as a model of how to be a sensible skeptic in the world.Posted by Timothy Burke on 08/24 at 07:43 PM
It’s kinda typical that a debate has to ensue as to whether this technique is fraudulant or not. Are the people who criticised your choice to try this convinced you are dumb and gullible, and are not approaching it with a positive attitude but an intellectual scepticism?
Anyway, Jamie’s experiences look very much like what happens when I have worked with people who are categorised non-disabled who are learning to read and express themselves (either people who missed out on learning to read and write or those learning a second language). Using words that they didn’t use before is often just a confidence issue. We all do it. I know what loads of words mean but have only encountered them on the page, and have never actually spoken them out loud. Ratiocination is an example. I know exactly what it means but even when I was taking a uni course on detective novels did not utter it because I was unsure of how to say it (is it ratio, like the math word or rat-eh-oh?)
It looks to me like ‘shelling’ and ‘excursion’ are the kind of words that lots of kids know anyway but might rarely use. Perhaps the software gave them as an option and they were chosen because Jamie understood what they meant.
Your observation that J was thinking about words like composition and delusion is correct, I think. I know poor spelling kids whose verbal work is stunning in terms of vocabulary and construction whose written expressions are simplistic and ill constructed because when challenged they are embarrassed that they can’t spell the words, or don’t know the grammatical and punctuation protocols to use. Sometimes they are just impatient and put simple crap down to get the writing job finished quickly.
The key is confidence in trying stuff and making errors. Perhaps Rosemary’s ouija board is really all about letting Jamie know that what he is writing is worth something. As you say, she is showing him what he is capable of.Posted by Sir saltydog of Englishland on 08/24 at 08:12 PM
If anyone wants to follow up the use of FC with people with some speech, there’s a canadian example discussed by Crossley in the EJDC here.
The capture is ‘can’. Rubbertree plants beware.Posted by Chris B on 08/24 at 08:43 PM
Thanks for the detailed parent’s view of the first sit-down with the app and the FC sales rep. I’ll look into it for Jonah when we get to Berkeley.
The word is “needed”, as in not.Posted by on 08/24 at 09:25 PM
I admire your informed skepticism coupled with your willingness to hope. As ever, Jamie is lucky to have you as a father.
Whether or not the Beirut sentence is his, it is amazing and exciting that Jamie is pushing forward in response to the stimulus of the device. This: “Clearly, he was thinking hard about his session with Rosemary that afternoon, and clearly, in thinking of words like “competition” and “delusion,” he was thinking about words he’d feel more confident about writing if only he knew how to spell them.” is splendid news. That’s the sort of thing computers are *for*.Posted by on 08/24 at 09:40 PM
I do know that I learned enough to doubt people who say “FC is nonsense, Rosemary Crossley does FC, therefore Crossley’s work is nonsense.”
Well, of course, you doubted us before.
A couple of points:
1--I don’t believe anyone argued against assistive technology before; I certainly argued in its favor. The software does sound great.
2--The beef with Crossley is that she (or very compliant parents) puts words in children’s mouths, and calls it improvement. You saw some of that yourself.
3--You said before you don’t doubt Crossley’s accounts of cases where she’s helped. Why? It has never been validated by researchers outside her circle. Now, the treatment options for Down’s are limited. But there are treatments for communication problems that are well-validated.
3--That Jamie would be react enthusiasticly about this is not really a surprise. He sat down to type and wonderful sentences came out. It’s been a long time since I’ve had the experience of becoming good at something all at once, but I remember when i finally figured out how to hit a good serve--it was fucking glorious. Jamie should be thrilled by that, and I wish you and he many more such happy days. The question will be: what happens when he goes home and has to work with an honest facilitator? When the sentences don’t get better and may get worse?
4--You didn’t mention whether Crossley did an assessment before she started working with Jamie, or if she reviewed with you the results of prior assessments. If she didn’t, shouldn’t this be the biggest red flag (not that the others aren’t gigantic)? How would I (were I the treating professional) know whether Jamie was creating sentences above his usual level? By the happy response from the parents? Not every (OK, probably no)parent coming to see her is as analytical as you are. No credible professional would start treatment without that information. Because everyone is different.Posted by on 08/24 at 10:42 PM
Thanks for a great, informative post, Michael. You’ve certainly got me curious about the software and I’ll look into it. Please do post about how Jamie gets on with it.Posted by on 08/24 at 10:56 PM
I’m a big fan of harnessing technology to help people and it sounds as if this computer program, combined with Jamie’s in-person introduction to its possibilities, have really opened a door for him.
Youngest uses some similar software at her school (for instance, they have the Kurzweil software so she can respond to all sorts of classroom material on the keyboard—it’s software we also use at the U for some of our students). From her experience, I know that anything that makes communication easier (contextual word prompts, for instance) speeds up her work, encourages her to write more and increases her fluency. But that only happens if someone shows her how to use the tools. Then, stand back and let her rip!Posted by Ancarett on 08/25 at 07:23 AM
Even if the FC communication itself is “suggested”, or whatever, if Jamie’s communication away from FC improves noticably after he works with FC, that’s just a single data point but it’s a very powerful one. Michael seems to have noticed improved communication almost at once.
The automatic rejection of “anecdotal data” is often used in a suppressive way by the defenders of the weaker scientifica orthodoxies. If you don’t undertstand a phenomenon very well, following up on anecdotes is a part of the empirical method. I’d ignore anecdotal data in physics, but not in clinical psychology. (Sorry, clinical psychology! Your just not good enough to justify your claims.)Posted by John Emerson on 08/25 at 11:06 AM
Posted by on 08/25 at 01:20 PM
Rock on, Daddy-o!
(translation: thanks, as ever, for the beautiful and generous telling of your family’s stories.)Posted by john on 08/25 at 02:36 PM
I’m beginning to think there’s some sense in trying to distinguish between two kinds of fraud: “gentle fraud” and “hard fraud”. Things like homeopathic medicine and aromatherapy are - by and large - gentle frauds, frauds which utilize people’s willingness to believe that something is doing them good to do them some actual good (by relieving their stress, making them feel cared for, activating the placebo effect and so on). They’re kind of hyperstitional: they produce effects that are conditional on a willingness to believe in their effectiveness. Gentle frauds make canny use of your credulity to make the world seem a nicer place, and can serve the therapeutic purpose of making being in the world a more bearable experience. Gentle frauds leave you with something, even if it’s only the lingering afterglow of vanishing fairy-gold.
Hard frauds use your credulity as a lever to take something away from you; they make a fool of you, undermine your epistemological confidence, and often empty your wallet into the bargain. People who have been the victim of hard frauds, or who are very much afraid of being made the victim of hard frauds, are often uncompromisingly negative about the value of gentle frauds; for some of us (and I include myself in this) the willingness to succumb to a gentle fraud indicates a slackening, a lowering of the defences we need to stave off the hard frauds. If you let just one fly settle on you, soon you’ll be crawling with the blighters; better to scour the epistemological landscape with the most corrosive skeptical agent you can lay hands on, and who cares if a few harmless placebos are reduced to evanescent froth in the process?
Now I do think that FC, as described here, has a strong whiff of gentle fraud about it. Perhaps in some cases it really does turn out to be hard fraud in disguise - really you’d have to find the people who’ve been most cruelly disappointed, most robbed of dignity (and/or hard cash) by it and ask them. But I imagine there are more or less satisfied customers as well, people who gave it a try and found it helped and left it at that, and it may be that the way to keep a gentle fraud gentle is not to be drawn in too much - to be half-agnostic, half-skeptical, believe in it just enough to suck the juice out of it but not bite too deep into the bitter pith. I don’t think I could do even that; I just hate being lied to, even if the person telling the lies believes them and even if it’s for my own good. But I have to respect it as a strategy, since there are more than a few arguably worthwhile things in the world that actually do work the way gentle frauds work, and an inability to be even tentatively suckered by them is at the very least socially hampering.
I hope Jamie has fun with his software - it sounds intriguing.
Captcha: *became*, aptly enough for a comment about hyperstition…Posted by Dominic Fox on 08/25 at 06:03 PM
What I learned from my father is that your children are the love of your life. You’ve proved that point again and with great intelligence and wit to boot. Jamie is very lucky to have you as his Dad and you are very lucky to have Jamie as your son.Posted by gmoke on 08/25 at 06:54 PM
You’re right that most of the FC controversy is irrelevant, as Jamie has language skills, but has trouble expressing them. The software sounds like a useful aid, and if it improves his confidence, then that’s likely to make a change in his decision to use other methods more regularly. Just wondering if a trackball system might be easier than using a keyboard. I expect you’ve consulted with an SLP or rehabilitative technology specialist regarding communication strategies, but the new software might be aided by other tools.
As for FC itself, the most gentle review I can find is here.
To follow on an earlier comment, FC seems to be a soft fraud. The proponents are sincere and believe very strongly. Unfortunately, as the evidence went against them, they have chosen to validate their work in ways that do not require evidence. In rare cases, some individuals who had not demonstrated language skills appear to have graduated to independent use of tools. Most haven’t, and the facilitators are always shocked by their own role.
A good (and damning) review of the research is in the chapter on autism in the book ‘Science and Pseudoscience in Clinical Psychology’, - should be in the Penn State Library. I note that most of the organizations involved in diagnosing or treating individuals with mental disabilities have position papers on (or rather, against) the use of FC (see the links on the Wikipedia entry).
Jamie is fortunate to have a dogged, inquisitive and assertive family to back him up. I always worry about those kids whose families don’t have the confidence, time, finances, connections, and who find just getting by is a full-time struggle.Posted by on 08/26 at 10:20 AM
There’s a worrying tendency in these comments to sanctify Michael, with constant invocations of how lucky Jamie is to have him as a father. well, yes; but everybody working in the disability field has learned to hear “I think what you do is wonderful” as “I’m not a wonderful person, so I’m not under any obligation to do it”.
Which is of course very far from what Michael is saying, here and in the book. He doesn’t claim to be special, and he puts his handling of the Down thing forward more as an example of what anybody can and therefore everybody should, mutatis mutandis, do. We’re not grading on a curve here, people.Posted by on 08/27 at 01:12 AM
Riveting post--on disability, writing, and self-representation, and, of course Jamie, who exceeds all those categories. Thanks, Michael.Posted by on 08/27 at 01:14 AM
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Many kids do get misdiagnosed and it is very sad.FC software like IntelliTalk 3 are great tools to teach and help disabled kids learn faster. I bet you will be happy to introduce this new gem to Jamie. I have a friend and her daughter seems to have the same disability but she is very small to be diagnosed properly and we did not wanted any misdiagnisis this early. Good luck!Posted by Dentist in Fayetteville on 03/28 at 06:00 PM
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