What's the Product of 3 Times 21?

Rosemary Crossley, A.M., Ph.D.
Speechless: Facilitating Communication for People without Voices
Chapter 9, pp. 156-79
Copyright © Rosemary Crossley, 1997
   Reprinted with the permission of Rosemary Crossley, A.M., Ph.D
Director, DEAL Communication Centre Inc.
538 Dandenong Road
CAULFIELD 3162 Australia
61-3-9509 6324. Fax: 61-3-9386 0761

It's hard to read a poem to yourself—
You cannot hear the words.
You have to imagine the sound, the rhythm.
The sense is there, the feeling lost.

Imagine writing a poem without being able to read it aloud.
It's like playing a record in a soundproof room—
It's going round, but no-one on the outside can hear.
If I was deaf, would it be the same or different?

     Almost no one who knew Jan, the fourteen-year-old author of this poem, believed she had written it. She has Down syndrome. People with Down syndrome don't write poetry. People with Down syndrome can't learn to read. That's what everyone believed when Jan's parents were growing up. It's probably what the doctor who delivered her believed.
     Down syndrome is the name given to the cluster of physical and neurological impairments caused by certain chromosome abnormalities, most commonly a third copy of the twenty-first chromosome, trisomy 21. The physical effects of the chromosomal abnormality are variable—about forty percent of babies with trisomy 21 have heart defects, up to sixty percent have correctable visual impairments—and these effects may include almost every part of the body.
     The syndrome was first described in 1866 by Dr. Langdon Down. Down argued that many congenital "idiots" (a quasitechnical term in his day, not just a term of abuse) exhibited anatomical features absent in their parents but present as defining features of "lower" races. He found idiots of the "Ethiopian variety"—"white negroes, though of European descent." Others approached "the great Mongolian family." "A very large number of congenital idiots are typical Mongols." The term "Mongol" has gone out of use in most countries, but the prejudices inherent in the term remain.
     Jan is a pretty, shy, slightly built girl. When she first came to DEAL she was almost fourteen, but her short stature and her sweet little dress and pigtails made her look much younger. Her mother, Laura, must have been in her mid-forties when Jan was born and was now about sixty, and her father was probably nearer seventy. Jan lived on her parents' farm and traveled to and from a nearby small town to attend a special school for children diagnosed as intellectually impaired.
     Jan's shyness made it very hard to assess her speech. At first she wouldn't answer questions at all, and when she did her speech was so soft that it was almost inaudible. Her parents said she had some reading and spelling skills—she could write a few words and phrases by herself, she could copy written material, and she could read aloud. With some coaxing, I got her to read a few lines from a children's book, and her reading was slow and halting but reasonably accurate.
     Jan was very interested in deal's communication equipment. She went to the typewriter of her own accord and began typing quickly without assistance. Like most people with Down syndrome she had low muscle tone, but despite this she appeared to have few problems with her fine motor skills—she looked at what she was doing and she was able to use her hands and fingers well. All that came out, however, was a few words she'd practiced typing a lot previously: MUM, DAD, JAN.
     I wanted to see what she would do if she was slowed down, but for a timid girl Jan was surprisingly determined about her independence. I finally got her to accept some help—I held on to one end of a rod, she held the other with her left and best hand and typed with one finger. The resistance I provided slowed her down very substantially, and the quality of her output increased as her speed fell. I gave Jan a picture of a cow and asked her to write me a sentence about it. Instead she typed, THIS TYPING IS HARD. I HAVE TO THINK. that was, of course, the aim of the exercise. Previously Jan had simply been repeating some overlearned motor patterns, almost without conscious thought.
     Jan was one of those unlucky children in whom shyness and fear of failure combined to give the appearance of stubbornness and stupidity. She was so afraid of getting things wrong— afraid with good reason—that she preferred not to try them at all, so afraid of giving the wrong answer that she preferred not to speak at all. This got her in trouble constantly. Unfortunately, Jan had severe word-finding problems which limited her ability to get her meaning across and restricted her to very simple utterances.1 While she could read aloud—the written word on the page cued her, and she was able to retrieve the spoken word with an effort—her reading aloud was bedeviled by the same word-finding problems which affected her spontaneous speech, preventing her reading with any fluency.
     While I was talking to her mother Jan spontaneously and independently typed MUM DAD COW DAD IS COW. We both laughed, and I said, "No, dad is a bull", whereupon Jan spontaneously typed, MUM IS COW. She then typed DAD IS and went for the B, stopped short, and typed JAN, her most fluent word— the word that was most likely to come out in typing, though not in speech, any time her concentration lapsed or she hesitated. I held out the stick, she took it and typed, DAD IS BOOL. It was almost like aphasia of the fingers. Gradually Jan relaxed and became more willing to work with me, and more willing to allow me to hold on to the end of the rod and slow her down.
     Five months after her first visit Jan came in earning a copy of Peacock Pie, a collection of Walter de la Mare's poetry. A number of the poems are old favorites of mine, so I read them aloud to her:
'Is there anybody there?' said the Traveller,
Knocking on the moonlit door;
And his horse in the silence champed the grasses
Of the forest's ferny floor;
Tell them I came, and no one answered,
That I kept my word,' he said.
     Jan's parents were limited in their ability to read to her because they were not native English speakers. Laura said Peacock Pie was Jan's favorite book; she'd bought it herself. Jan wanted to type out a poem from it, and while she was doing this I got some other anthologies out.
     While Jan finished her copy-typing I again discussed the nature of Jan's speech problems with her parents, who were anxious to cure them with speech therapy. While speech therapy may have helped Jan's articulation, her best hope for overall improvement in speech and communication seemed to be via written language. When Jan was typing she sometimes typed the first couple of letters of a word and then said the whole word—that is, she was cueing herself from written language in the same way as Penny had when she was recovering her speech. This self-cueing was a very powerful way of helping Jan get out more words immediately and in the long term might also increase her spontaneous speech. Regular reading aloud might also help. In word-finding problems, as in many other things, nothing succeeds like success—the more times that a person succeeds in retrieving a word, even with a cue, the more likely it is that the word will be retrieved spontaneously next time it's needed.
     Her parents saw Jan's problems differently from me. They thought she was saying everything she wanted to say, that the only explanation for her not saying more or for giving inappropriate answers was ignorance and that her communication problems were solely due to poor articulation and lack of volume. Her slurred soft speech certainly didn't help Jan get her message across, but making her speech more intelligible wasn't going to fix all her communication problems. It was hard for her parents to accept that.
     By now Jan no longer needed to hold on to the rod to slow down, and could type short messages with just my hand on her shoulder. When she finished copy-typing her favorite poem she typed, I LIKE POETRY CAN I WRITE
     "A poem?" I hazarded.
     Yes. And she typed:
Better a mother who cannot love
Better a car that cannot move
Better a boy who cannot walk
Than to have a voice that cannot talk.
     Jan's parents were quite pleased with the poem, but I don't think they realized that Jan had written it.
     On the next visit Jan brought in another anthology. Again she'd bought it herself. I read and discussed a few poems. Very early in the session Jan indicated that she wanted to write another poem and quickly and confidently typed the poem quoted at the start of this chapter on the word processor. She was familiar with computers from school, and especially liked being able to see what she'd written on the screen and correct mistakes before they were printed. Her low muscle tone meant that she had little endurance, and after the first line I held her sleeve lightly, supporting her against gravity. By this time she'd lost her reluctance to accept assistance, recognizing how much more she could do with it than without it. She'd clearly composed the whole poem before coming. Apart from helping her with punctuation and layout I contributed nothing.
     Jan's next visit was her last for the year. Again she brought in an anthology, this time one of her brother's old English textbooks, and again I went through several poems at her request. She had some poems she particularly wanted me to read aloud—she showed them to me in the index—and some difficult poems that she wanted me to explicate. One was "The Ballad of Patrick Spens," which has a lot of dialect words in it:
0 laith, laith were our gude Scots lords
To wet their cork-heel'd shoon;
But lang or a' the pay was play'd
They wat their hats aboon.

And mony was the feather bed
The flatter'd on the faem;
And money was the gude lord's son
That never mair cam hame.

     I could understand her wanting help!
     By this time Jan could type original sentences without physical contact, but that was sitting next to me with my reminders to slow down exerting a brake and Jan using one finger. When she typed by herself she liked to use two hands in imitation of regular typists, and as she found it difficult to control one hand it was impossible for her at this stage to control two.
     She wanted to write another poem and again did so on the word processor, a machine which had plainly inspired her at her last visit.
Using a computer to write poetry is like using
Hand-made writing paper for the grocery list—
It is more sophisticated than the message.

Whatever happened to pens?
No-one will ever be sold a manuscript of my work.
Can I ever go back to my first ideas?

Quality presentation may hide poor content.
Does the software live up to the hardware
In poet as in computer?

     She tired quickly, and I held her sleeve for most of the poem.
     One of the more creative explanations offered by my critics for the unexpected output of people who type with facilitation is automatic writing. It is suggested that people like Jan type one or two letters at random and then their partners "automatically" make these letters into a word. Having got one or two words by this procedure, the partner then "automatically" completes a sentence. It's an interesting notion, and may even be correct in some cases, but among the questions it doesn't answer is the question of individuality. Jan regularly wrote poetry. Of the hundreds of communication-aid users I have partnered over the years, perhaps a dozen have written poems while I was their partner. These have all been of varying styles and standards. Anne, required to write a poem for an English assignment, found the task extremely difficult and struggled for days to produce some passable doggerel.2 Why do my automatic completions produce poetry when I sit next to Jan and not when I sit next to Anne?
     Because her parents thought that Jan did not fall into the category of someone who needed to work with a communication aid, this was the last time they brought her to DEAL. During the next year I visited Jan twice at her special school. In June she used a Communicator well, joining in a discussion involving her teachers. What the teachers said, however, wasn't encouraging. Being her own worst enemy, Jan was said to have rejected any slowing of her typing (as she had initially with me) and because of this her production at special school had been little more than her usual stereotyped utterances. She was doing some original typing, but not very much. Jan just hadn't had enough practice at independent keyboard use, and the self-monitoring techniques that I'd been teaching her hadn't been practiced enough to become ingrained. The only positive news was that Jan's teacher reported that her speech was more fluent in everyday situations.
     When I came back again in November I was shown into a meeting with Jan, her special-school teacher, and her parents. Her parents made it clear that they didn't think Jan should use any form of augmentation for her speech because "she can say everything that she needs to say." Her teacher went along with them. And Jan sat there mute throughout. She wouldn't or couldn't speak, and we were sitting in such a position that I couldn't just bring out a Communicator and give it to her.
     I argued as best I could. I told her parents truthfully that Jan was as talented with language as any child I'd ever taught. I told them that her poetry was exceptional for a student of her age, that she had real talent that she could use only if we gave her the equipment and the skills she needed. Nobody (Jan aside) believed a word I was saying. Her father, her mother, and her teacher saw the person that they had always seen, the person that the textbooks told them that they should see. They saw a girl who was doing well for someone with Down syndrome. I was saying that Jan was not just doing well for someone with Down syndrome but that her writing was exceptional for any child, and that was not believable. Her parents thought I was sincere, but they didn't think that our "great work" could possibly extend to their own daughter. Their daughter has an extra chromosome.
     I hope Jan's story has a "to be continued," but at the moment there's no sign of it. I haven't seen her for years. What has happened to her talent? Is her head full of poems that she can't tell anyone, that she can't type because the stereotyped words get in the way?
     Her parents were told to have realistic expectations; Jan's teacher was told what could reasonably be expected of someone with Down syndrome in her special-education course. Jan has been gagged by the limited expectations imposed on people with Down syndrome.
     Down syndrome is usually diagnosed at birth (if not before, through amniocentesis). Depending on the age, training, and experience of the diagnosing doctor, the parents may be told within a few days of the child's birth that their baby is severely, moderately, or mildly retarded. The other professionals with whom the parents come in contact are also likely to have a definite opinion on the intellectual attainments to be expected from a child with Down syndrome. Their views will vary depending on their experience or the reference sources they consult. Generalist reference sources may be quite out of touch with more recent developments. The Oxford Companion to the Mind (Gregory, 1987), for example, says that intelligence is "limited to an IQ of between 20 and 60" and "most die young."
     Views on the extent of the intellectual impairment have changed significantly since the syndrome was first delineated in 1866. A 1986 article said that
Up to the early 1900s people with Down syndrome were typically viewed as being profoundly mentally retarded. Surveys of children and adults during the first half of this century classified most people with Down syndrome in the severely mentally retarded category. Kirman's (1944) review suggested that the majority of Down syndrome children fell in the moderately to severely retarded range, with 2-3% achieving at the mildly retarded level. In the 1960s there were reports of up to 10% of cases being educable or mildly retarded. By the mid-70s it was suggested that perhaps as many as 20-50% of older children and adults with Down syndrome were in the mild range, with a small number even achieving within the normal range.... (Clunies-Ross, 1986)
This revision is the equivalent to a jump of something approaching 40 points in mean IQ scores over a sixty-year period. What will we be saying in 2006?
     What we're dealing with now, however, is the prejudices parents and professionals have acquired over the past thirty years. If you hear something long enough and often enough it becomes part of your worldview, built into the structures you've erected to order and control your experience. If something occurs that contradicts one of the beliefs that have formed your worldview it's not easy to handle it, especially if accepting it entails dismantling an entire structure. Rather than risk seeing the walls come tumbling down when you try and replace part of the foundations, you protect yourself by ignoring the discrepancy. You refuse to come and see the contradictory evidence. You see the evidence but find reasons to dismiss it. You reshape the evidence to fit your preconceptions.
     If the divergence between expectation and reality is large enough you see the evidence but don't process it into memory. People who observe a child showing some unexpected capacity sometimes come away with no memory of the event. If reminded of it they are genuinely surprised and say they must have nodded off. Shown a videotape in which both the child's performance and their reaction to it are evident, they become confused. Some observers are happy to be shown that their recollections were wrong; it may be that their amnesia was due to the incompatibility of the new information with their preexisting memories, rather than to intrinsic negativity about the child. Other observers have such strong negative expectations that it is virtually impossible to change them. They didn't see the child do anything unexpected. Shown the videotape of the child performing in front of them, they try to rationalize it away—it was a trick of the camera, or the light. Ask the child to repeat the performance and the observer needs the bathroom or has to make a phone call.
     One common misconception is that the parents and professionals associated with a disabled child will accept any improvement with open arms. If the parents have painfully "come to terms with limited hopes for their child," have in fact abandoned hope for their child's development, and have made plans and placement decisions accordingly, it may be as hard for them to accept later good news as it was initially to accept the bad. If the professionals had a role in developing the negative prognosis given to the parents or if they have provided services to the child based on that prognosis, they may also be threatened by any suggestion that the child has more potential than they thought.
     Communication at a previously unexpected level may be especially likely to cause distress because it not only challenges expectations but almost inevitably entails immediate changes. Your child, your patient, your student, is not the person you thought you knew. Requests, jokes, criticism, questions— coming from a teenager or adult for the first time, they're all threatening. Think of the difference between the average teenager and one who can't ask for money, can't use the phone, can't object to anything you do, and can't swear! Not every parent who's used to living with the latter welcomes a move toward the former. You have to interact with this individual in a way you didn't before, you have to consider his wishes, ask his opinion.
     The first person with Down syndrome for whom I tried to find a means of communication was Heather, a young woman in her twenties who was brought to DEAL early in 1986. At that stage I hadn't done any reading on Down syndrome since taking my teaching diploma in the mid-seventies, when the texts had said that people with Down syndrome typically had IQ scores below 50. This undoubtedly influenced my approach to Heather. At the time there were few portable communication aids for people who couldn't read or spell. I didn't even offer Heather any reading tasks because I didn't want to embarrass her. The lack of appropriate low-level communication equipment for people like Heather in fact prompted me to ask a local firm to develop a small, simple speech synthesizer, containing eight utterances, along the lines of "I'm hungry," which would be spoken when Heather pressed a picture of, say, food. Meanwhile there was nothing for Heather, who totally refused to use any communication aid without a voice.
     While Heather was waiting for her new eight-utterance voice, a literacy program was established for other people at her center. Seeing what the others were doing, one day she reached for an alphabet board and started to spell. Later her elderly mother told me that Heather, the youngest in a large family, had always been in the kitchen when the others did their homework, and they'd always spelled out messages to her using magnetic letters on the refrigerator. "I always knew Heather had plenty in that small head others but couldn't tap it."
     However, Heather had learned over her twenty-three years to manipulate the people around her pretty well, and one of the ways that she did it was by playing dumb. She'd found out that you had a much more peaceful life if people didn't think you could do very much. I'm sure that a lot of children would drop out in the same way if they could, but their parents won't accept their excuses and their teachers write "Can do better" on their report cards. Heather didn't have that problem—she had down syndrome, and people had been perfectly prepared to accept that she was dumb.
     Heather needed persuasion to give up her coping mechanisms. She had a job in the hostel laundry, but for quite a long time after she started to type she refused to type at work. The supervisor was in a very difficult situation. She didn't know whether she should berate Heather for not typing, because she didn't know how much Heather could do. Heather was certainly not about to show her; she knew very well that she was going to have a much easier existence if the supervisor never knew what she could do. I was brought in to troubleshoot—the traditional hired gun. When she saw me walk through the door Heather's face was a picture. After typing a few words to the supervisor under direct orders from me she then went on with a great grin on her face to type, LAY ME OUT—I'M DEAD. she'd been found out, and she knew it.
     If I'd been aware of what was happening elsewhere with children with Down syndrome I wouldn't have been so ready to write off Heather. Because most children with Down syndrome have significant problems with speech, some countries make early intervention with sign language as much a priority for infants with Down syndrome as it is for infants who are deaf. These programs, which start at the age of six months, not only produce the immediate benefit of being able to communicate in sign, but produce very significant improvements in speech among the children who participate. Research having shown that visual memory is a strength for many children with Down syndrome, reading programs have been developed to take advantage of this, and it is now not uncommon to find children with Down syndrome reading at or above the level of their school classmates. However, until this is common knowledge, many children with Down syndrome will not be challenged to perform. Fiona's experience is typical. Petite and pretty, Fiona always wore trendy clothing, and liked getting her ash blond hair permed. Her mother provided foster care to temporarily homeless infants, and Fiona often came to appointments accompanied by a new little baby. She loved looking after all the children, but always had a particularly soft spot for those with Down syndrome. Perhaps she saw herself in them.
     When Fiona started coming to DEAL she was twelve and a half and in fifth grade at her local elementary school, though most of the academic work she was given was around the second-grade level. She was old for her class because she'd started school late due to health problems. She'd had heart surgery and needed to wear glasses. Her hearing was normal, but she'd had ear infections as a youngster. If you asked Fiona a question sometimes she'd reply in perfectly clear speech, sometimes she'd reply in speech which was hard to understand, and sometimes she wouldn't say anything at all. (This variability in speech is common among people with Down syndrome, who often have variable muscle tone and variable hand skills as well.)
     During assessment Fiona's main problem was a tendency to burst into tears like Emma. If she felt unsure of an answer or unsure of the situation she would cry. If she was asked to do something that she hadn't done previously she would cry, and would be totally unwilling to attempt the task. Her usual response to being asked a question was "I don't know." Fiona could be asked a question such as "What animal gives milk?" and she'd say, "I don't know." She had Down syndrome, it is expected that there are lots of things that kids with Down syndrome won't know, and it had been assumed by everyone around her that when she said she didn't know this was correct. She was thought to have only very limited written-word and letter-recognition skills and minimal counting abilities.
     We looked first at Fiona's speech. When she was asked to name pictures of well-known items—and you could recognize what she was trying to say even if her speech wasn't totally clear—it became evident that she had a significant word-finding problem. Out of fifty pictures she named thirty-five correctly in speech. To a number of the pictures, including pictures of common things like an elbow, she gave her stock response of "I don't know." Fiona could point to her elbow, she knew what an elbow was, and her response was not due to ignorance but to an inability to say the word quickly enough. When-ever that happened she said, "I don't know." If she'd had more fluent spoken language, or had been older, she might have said, "I know what it is, but I just can't think of the word." That, however, required not only more maturity but more speech than Fiona had at her command. Her errors were typically associated words—that is, related words that were stimulated by the image—or words for things that were similar visually. The picture of a tent produced "camping," a cup "coffee," a flag "Australia," and a picture of a crutch produced the response "needle." In that picture the crutch appeared to have a large eye at the top. She obviously knew that the crutch wasn't really a needle, because she went on to say, "under shoulder." People who've had strokes often have similar difficulties with naming tasks.
     Some children with Down syndrome write well, but those whose speech is significantly impaired usually also have problems with handwriting. Fiona's writing was worse than her speech. She was left-handed, and left to her own devices would start on the right-hand side of the page and move back toward the left. The most common problems affecting the handwriting of children who can't write without a model to copy are motor planning and motor memory. Motor planning is required to start each letter in the correct place and start moving in the correct direction. It overlaps with motor memory, in that you obviously have to recall the movements necessary to produce a letter to know where to start it. Motor memory enables us to recreate a sequence of movements, such as riding a bicycle. It seems to be a particularly enduring form of memory, possibly because it is renewed each time the sequence is performed. Motor memory is involved in all actions we repeat regularly. Fiona didn't have the problems with everyday activities that were so incapacitating for Emma, but she did have major problems recalling and recreating sequences of fine movements, such as the sequences needed to speak or write a word.
     At Fiona's school the expectation was that she would produce written answers. Like all of her problems, her difficulties with writing were seen as the unavoidable corollary of Down syndrome. In one sense they were, of course, in the same way as my deteriorating eyesight is the unavoidable corollary of advancing age. Unavoidable doesn't mean irremediable: I got glasses. Fiona needed a remedy for her handwriting, and if it wasn't remediable then she needed a replacement for it.
     Typing might have produced an alternative to writing, but while Fiona could type out a small number of words that she had practiced often, and could laboriously hunt and peck to copy-type, she was unable to type a sentence spontaneously. If asked a question she would head to the first letter of the expected answer but would then go off the rails. When she was trying to type without a model she had problems with impulsivity (moving too quickly, leaving out letters and losing the thread like Jan typing with ten fingers) and perseveration (which in her case meant getting stuck on one letter and hitting it a number of times). Like Marco, Fiona also had a problem with automatic completions to words. Asked "What animal goes 'meow'?" she'd type, CA, but then put R to give CAR.
     Ironically, for children like Fiona the ability to write or type with a model often produces, rather than alleviates, problems. If a child can't write or type at all, people are prepared to believe there might be a physical problem. If a child can write or type with a model but not without, the obvious explanation is that the child has the necessary physical skills but can't spell. Like many obvious explanations it's an oversimplification.
     Typing evades many of the problems of handwriting. The motor-planning and motor-memory demands are minimal because there is no need to re-create the letter shapes. If you have the hand skills to push typewriter keys, even with one finger, all you need to do is recognize the letters you need and hit them in the right order. That's fine, if you're not impulsive and don't perseverate. Fiona was and did. Without a model, she was unable to stop herself speeding up and she found herself hitting keys before she'd had time to work out what came next and redirect her movement. Instead of erasing her mistake she would get stuck and hit the wrong key repeatedly. When she was copy-typing, she did so letter by letter, looking back to the original after every letter, thus both slowing herself down and breaking the pointing pattern, preventing perseveration.
     When I held Fiona's sleeve and pulled her back so she had to push against pressure to get to the keyboard, two things happened. Her accuracy improved (she didn't wobble, she didn't get typos), and her typing slowed down, enabling her to compose original sentences. While a lot of her words were phonetically spelled, it was clear that Fiona had a rational and consistent code for the representation of spoken language, and her output was probably not much different from that of other children in her class.
     Asked to type the names of another fifty pictures, Fiona identified forty-nine, though her spelling wasn't necessarily orthodox. Apart from whatever difference there is neurologically between recalling written and spoken language, producing written language is expected to be slower and so you get more time to think. You can look at the letters on the keyboard and perhaps cue yourself with the initial letter of the required word.
     Given a sentence to complete, "The baby pulled the cat's tail—what happened next?" Fiona said, "I don't know," and typed, MOW WAS MY TALE SED CAT—an attempt, we presumed, to get out something like " 'Meow! That was my tail!' said the cat."
     Tears really came in when we tried to assess Fiona's reading skills. I asked her to read an extract at the fourth-grade level. She declared that she couldn't do the task, burst into tears, and was reluctant to have anything to do with it. For Fiona, reading and the assessment of reading were associated with reading aloud. This meant that she really did have major problems with these tasks, and in fact failed at them consistently because of her speech problems. Reading aloud does not necessarily correlate with comprehension; it is a translation between modes. If the mode that you're translating into is severely impaired, as Fiona's speech was impaired, the process will obviously fail.
     Fiona had been failing even basic math at school. Again, that turned out to relate very much to her expressive problems. She had difficulty saying the correct answer, even if she knew it. Because Fiona's word-finding problem often caused her to say words associated with the word required it was thus extremely likely that if she was asked for a numerical answer any of the numbers would pop out, just as any letter would pop out if she was asked to name an indicated letter. It was then of course assumed that Fiona didn't know the answer. This is a perfectly sensible explanation, and the burden of proof is certainly on anybody suggesting that it isn't correct. In fact, however, it turned out that her errors didn't mean that she didn't know the correct answer, only that she couldn't say it. She would have been better off not saying anything at all. She had realized this herself, and so ended up saying "I don't know" and "I can't do it" all the time.
     It eventually became clear that Fiona could handle the concepts being taught in mathematics, but she did have a problem getting out the answers. In handwriting, her motor-memory problems created difficulties; there were frequent confusions between numbers, particularly 2 and 5. Such confusion is very common in children just learning to write, and is only a cause for concern when it persists to a point where it significantly affects academic performance. The sheer effort of getting numbers onto the page distracted Fiona from solving the math problem itself. Our eventual strategy was to get Fiona doing math on a number board. When she was asked a question she was able to point completely independently to the number or numbers that made up the answer. It acted as a good prompt for speech; she would often point to the correct number on her number board and then say it. After having used the number board for some time Fiona occasionally even said the correct answer immediately without touching the numbers on the board first.
     Three months after the start of the assessment we finally got Fiona to do a reading test. I enlarged a text on a photocopier so that she could see it from a distance, and I left it without comment on the table in front of her while I went to get some equipment, leaving her with nothing else to do but look at it. I'd memorized the associated questions so that I could ask them without referring to the test sheet. Under these circumstances and with me holding her sleeve she typed the answers to a fifth-grade reading comprehension test, and her performance was fine.
     Gradually we got through Fiona's tears. When I asked, "What about doing some reading?" or "What about doing a crossword puzzle?" Fiona wouldn't say "I can't" or "I don't want to" but "Okay." Indeed, after six months when I said, "Now, I've got something really hard for you today," she'd say, "Oh, I can do that." This may have been due to two things; she was experiencing success, able to show for the first time that she could do the tasks that she was set, and she had confidence that the task was going to be presented in a form in which she did have a reasonable chance of doing it.
     With other children we had some success using spoken cues to elicit speech, but Fiona's speech really wasn't cued either by being given the starting sounds of words, or by the use of word pairs such as "knife and . . ." or "cup and . . ."3 It was very difficult for her to get the words out, she knew that, and so she tended to freeze when asked to do it, which didn't improve the situation.
     To find out whether Fiona could produce an extended narrative I gave her a picture of a man giving something to a robot and asked her to make up a story about it. She typed,
It was the first time Len had met a robot. He didnt know how to behave. He was worried that hed get it angry and really it would go crazy. He put his hand out but the robot didnt shake it. He expected the robot to speak the robot said Hullo Len in a gastly voice. Len said hullo and made a cup of tea. He offered the robot a cup but the robot wouldnt have any because it would rust its insides. Len gave him a micro chip instead.
     Not great literature, but fine for a thirteen-year-old. Fiona's use of unexpected words is sometimes reminiscent of Jan, but she has never shown any inclination to write poetry. Six months after Fiona started coming to DEAL, when her pointing skills and her self-confidence had both improved, I gave Fiona a Peabody Picture Vocabulary Test.4 Before asking each question I put Fiona's index finger on each picture, to ensure that she had scanned all possibilities and to ensure that there was a pause between questions, reducing the chance of impulsive or perseverative responses; otherwise, she had no facilitation. She obtained a raw score of 143, and her standardized score was well above the average for her nondisabled peers. The last plates that she got correct were "edifice" and "rapture."
     Fiona's family gave her complete support. Her mother had always paid for Fiona to have extra tuition outside school hours. Her tutors visited DEAL along with staff from her school, and during her final year of elementary school everyone incorporated into their lessons the typing and multiple-choice strategies that we were using. The results were good, everyone's expectations rose, and Fiona blossomed.
     One of Fiona's strengths was that with multiple-choice work she could mark the boxes independently with a pencil, provided that, again, the administration of the test was slow and that she was aware that there was an expectation that she'd do well and not muck about. Using multiple choice she completed seventh-grade reading exercises without difficulty. She read for pleasure and was crazy about Babysitter Club books. Unfortunately, her typing had not yet become totally independent; while she could now type satisfactorily with just her partner's hand on her shoulder, if all physical contact was removed she was able to type only the first few letters of an answer before speeding up and losing it.
     Despite Fiona's success at elementary school, all the problems of negative expectations resurfaced when she moved to secondary school. The teachers were kind, but they really wanted Fiona to be able to do the work in exactly the same way as the other students. If she couldn't, that meant she was retarded and she shouldn't be doing it at all. If she couldn't write, then she shouldn't be doing subjects that required writing, and some teachers tried to exclude her from their classes. In mathematics more adaptations were allowed and Fiona continued to use her number board. She answered questions by pointing clearly and independently to numbers. These were then transcribed by an aide, and she coped well with the regular math syllabus. At the end of the year, however, she was not allowed to move on to the next year's syllabus, and at the end of the next year, despite a successful repetition of the previous year's work, it was said she had no potential to progress any further.
     Since then Fiona has participated in some research conducted by Stacey Baldac and Carl Parsons from the School of Communication Disorders at Melbourne's LaTrobe University, which aimed to explore the issues involved in testing people who use facilitated communication. I was Fiona's facilitator, and she did well, successfully describing pictures I had never seen. Her answers did, however, show the interference of the same word-finding problems which plague both her speech and her typing. For the first picture, for example, Fiona started by typing bed. I asked her, "Is that a picture of a bed?" "No," she said. She then typed bet, and beg, and beast, and negatived each of them when I said it aloud. She typed, a great big australian be . . . but couldn't finish it. Finally one of the researchers pointed to something in the picture (which was concealed from me by a screen) and asked Fiona to tell me what that was. She typed sand, and I was able to guess that she was looking at a picture of a beach. Once we'd broken through that impasse she was able to describe the details of the picture with no difficulty.
     Fiona's mother and her tutor were still frustrated by her school's attitude. Fiona was doing more advanced work outside the school than the school would even allow her to try'. She couldn't prove the school's expectations wrong because they wouldn't allow her to attempt any tasks beyond the level which they expected of students with Down syndrome. Fiona herself was angry. When we were talking about the problem and I asked her if she had anything to say she almost threw herself at the keyboard and typed, at speed, and without corrections or punctuation, the words which clearly she'd have spoken if she could:
Getting off the train I saw a man in a wheelchair. He wasn't able to talk and he used a computer. Why do they have ramps for wheelchairs if they don't let [in] people like me— [who are] told [we are] stupid. After all access isn't about walking [but] about being in everything. I want to be in class with all the other students. After I get better at following all the work I want to do exams so I can do a childcare course. I like children but I need to get a certificate to work with them. A trial would be good. What about work experience in a childcare center? Now I've finished but don't just laugh. I really want to do this. Really seriously I want a job with children. Better to work than get a pension. Now that's all [Punctuation and capital letters added].
     We linked Fiona's school up with a school where another DEAL client with Down syndrome and very little speech was a successful senior, and last time I heard from Fiona's mother she said things are now going better. Fiona's family is supportive, and her ambition to work with children seems both reasonable and realizable.
     Many people with Down syndrome are doing or have done things which challenge the accepted wisdom about the inevitable effects of trisomy 21—writing books, graduating from college, holding down regular jobs, driving cars, even winning gymnastic contests. Accounts of people with Down syndrome who didn't fit the pattern have appeared regularly over the years.
     Under the unlikely title "The Sage: An Unusual Mongoloid," John Buck, a psychologist, discussed the case of Benjamin Bolt, who had been "committed to a hospital for the mentally deficient in the early 1940's" after the death of his parents. Mr. Bolt, who was in his forties, was described as "about as defective a Mongoloid as one could expect to find locomoting without active assistance." Nonetheless his "courtly acknowledgment" of Buck's introduction "would have done justice to a seasoned diplomat." Mr. Bolt, who had been educated by his mother, did not have significant impairments of speech or hand use and had little difficulty convincing Buck that he did not belong in a state hospital. Buck describes in some detail the tests he administered.
His answer to the third Similarities question (In what way are a dog and a lion alike?) is noteworthy: "They are in two different classes; the lion is in the cat class, and the dog is in a class by himself." Then, after a brief pause, he added as if in afterthought, "But of course they are both carnivorous!" (Buck, 1955, p. 457)
     It still took several more years for Buck to convince the medical administration that Bolt should be allowed to leave the institution. Buck concluded his account by saying,
     For many years the term "Mongolian idiot" was freely used in the literature. Later it was conceded—grudgingly, to be sure—that Mongoloids under optimal circumstances might even function with the efficiency of morons. Then Pototzky and Grigg reported two Mongoloids whose intelligence might be termed "borderline."
     This changing trend and the case of the Sage [Benjamin Bolt's nickname in the institution] compel one to speculate that before too long it may well be demonstrated that Mongolism need not inevitably be accompanied by mental retardation. . . . (Buck, 1955, p. 481)
And this was forty years ago!
     Part of the difficulty in changing the stereotypical view of Down syndrome may be due to Down's original invention of the term Mongol, which carried with it overtones of inevitability and permanence. Inherited racial characteristics, after all, cannot be changed. A racist approach may still be operating in the community at large. Individual differences between children with Down syndrome are often overlooked because of their superficial similarities of appearance, and the similarities between children with Down syndrome and other children are often ignored. A ten-year-old with good speech and writing skills had been attending her local elementary school without any extra help, and was not by any means bottom of her class; her teacher recently asked DEAL for a book on how to teach children with Down syndrome. Her student isn't "children with Down syndrome," she's a child who on the face of it doesn't have any disability except other people's prejudice against her face.
     What academic achievements are possible for most children with Down syndrome cannot be known until the first group of students who have had their expressive impairments addressed since infancy and who have attempted the regular syllabus at regular schools has proceeded through the regular school system. They will be the first group for whom the playing field has been leveled. If they are not held back by the prejudices of their teachers, doctors, and peers, they may show us that trisomy 21 produces a variable range of physical and neuromotor problems, which, like cerebral palsy, may, but does not necessarily, include learning disabilities.
     A few years ago I spoke about the surprising competencies we were finding in people with Down syndrome to an academic whose speciality was Down syndrome. He said, "Yes, I know what you mean. Last year I gave a five-year-old Down girl a set of standard intelligence tests, and she scored an IQ of one hundred and fifteen." Wonderful, I thought, here was some supporting evidence, so I asked him where he'd published this. He looked at me somewhat oddly. "Oh, I couldn't publish it. People would think I was crazy." Just to round off the story, I was telling it to another researcher shortly afterward, and he said, "That's interesting. The highest I've ever had one of my Down subjects score is ninety-nine." That's how stereotypes persist. Anomalies that would test the system are simply discarded as inconvenient.
  1. It is commonly presumed that the vocabulary of children with Down syndrome is limited to what they can say, rather than that they know words but can't get them out. One way to tell whether expression accurately reflects vocabulary is to reverse ordinary procedures—instead of assessing the children's language through their speech, assess their understanding of your speech. Instead of holding up a picture of a kangaroo and asking a child to tell you what it is (an excellent way of revealing word-finding problems), you present a number of animal pictures and ask the child to show you the kangaroo (if the child has sufficient pointing skills to make reliable choices). If you do both kinds of tests with the same list of words you can see if there are any words the child knows but can't retrieve or articulate easily.
  2. On the other hand, some reviewers of Annie's Coming Out were unkind enough to point out that Anne's prose was better written than mine.
  3. Whether a particular cueing strategy works for a given person depends on the nature and location of the brain dysfunction which is affecting his speech. Two people whose speech seems very similar may not respond to the same cueing strategy, and the nature of their responses provides clues as to the type of impairment they have.
  4. The PPVT is a rather out-dated vocabulary test. Its only virtue, from my point of view, is that it requires no speech and can be answered by people who only have a crude pointing response. For each item the person undertaking the test is given a set of four line drawings and asked to indicate the drawing which shows the word the examiner says. While there are many possible explanations for low scores including poor eyesight, poor hearing, poor pointing, and experiential or linguistic differences, a good score always impresses school principals, and can help change attitudes to a student with communication impairments.
 
  Revised: December 20, 1999.