from Chapter 5, "Guidance"

…Compared to that first year, the second was much easier–if not a breeze than a gale force wind, an improvement upon the daily hurricane. I worked on my dissertation, taught classes at UF, and looked after DJ; Emily continued to work at CARD and spent lots and lots of time at Liney. During this year, DJ made significant communicative leaps. His signing improved to the point that he could say, “I want to eat” or “I want to take a bath,” though it remained strictly utilitarian and very repetitive. Issues with finger dexterity suggested that sophisticated signing might not be in DJ’s future. While he recognized more and more signs, he couldn’t produce them himself, even after much practice. We continued to cover our house—all of the objects in it—with sign diagrams, picture symbols, and words, especially words, immersing DJ in what experts call a “print-rich environment.” We also pressed on with speech therapy and, of course, OT.

If the primary goal of kindergarten had been to acquaint DJ with the expectations, routines, and activities of a regular school, then the goal of first grade was to begin the long march to literacy. Though Emily didn’t know whether he was a gestalt learner, she’d suspected he had great trouble deciphering spoken language and thus believed it pointless to teach phonics. Instead, she focused on sight recognition, utilizing his cultivated familiarity with puzzles and his desire to close the system (as with toileting) to build alphabet, number, and word awareness. The reading program DJ worked on began by asking him simply to find a word printed on the left hand side of the page in a grouping of, first, two, then, three, then, four, then five words on the right side of the page. The words would be accompanied by picture symbols or diagrams. “Point to same,” we’d tell DJ in sign, and he’d take the word on the left, which had Velcro on its back, and attach it to the proper word on the right. Before he’d actually attach the word, we’d make sure it was correct by asking him to point to his answer. A proponent of “error-free learning,” Emily believed that it was important to keep him from memorizing the wrong answer and to relieve the pressure of being right (especially for a kid with fragile self esteem who hadn’t yet secured his place in a regular classroom). The physical act of velcroing the word to its partner closed the system in a definitive manner.

At the beginning, DJ was correct only about thirty percent of the time, and so we’d have to ask him to reconsider. “Find same,” we’d say over and over, and he’d point to something else. Endless (and I mean endless) repetition accustomed him to English letters and letter groupings. Seeing the corresponding picture and sign helped to connect these graphic symbols to the things they represented. When we began, we had no idea if this literacy strategy would work or how far it would take us; we just knew that what had been tried previously hadn’t worked. Early in the first grade, the Resource Room teacher at Liney saw that DJ was having success in matching words, and fairly soon she became one of DJ’s most ardent advocates. In fact, when Mrs. Bollinger left to take the administrative post in the district, she assumed the PBS and IEP leadership role, problem solving creatively and intelligently.

Getting DJ to focus continued to be a problem, but we were making progress there as well. Having read a number of autobiographical accounts of autism, Emily advanced the theory of sensory input difficulties as a major impediment, perhaps the major impediment, to learning. Lack of input, too much input, a system of sensory processing wildly out of whack—these were the issues confronting kids with autism, kids who couldn’t seem to focus. At times, the everyday world was like a siren blaring in their ears or a fireworks display before their eyes. At other times, a void: a blank, operating room white, with the Autist like a patient on a table who doesn’t feel a thing—a patient in search of his body. The challenge was to tame the distractions the rest of us knew how to tune out and/or to provide the missing sensation. Somehow we convinced the folks at Liney that DJ needed regular sensory-input breaks: moon-shoes, a mini-trampoline, brushing, swinging, walking. You can’t imagine the look on the new principal’s face when the Resource Room teacher suggested that the courtyard outside the first grade classroom might be a good place for DJ’s trampoline. Envisioning a fourteen-foot trampoline that only DJ could use, the principal seemed shocked. “No, a much smaller one–like they use for aerobics,” the Resource Room teacher said, appreciating the principal’s concern. That almost no one scoffed at these unconventional pedagogical methods spoke to how invested the school had become in DJ’s success.

Once DJ had mastered the task of matching words, we moved on to fill-in-the-blank sentences. Again, we employed pictures to help convey the meaning of a sentence, focusing on one part of speech, one part of the sentence, at a time. Here, “error-free learning” was even more important, as DJ, at least initially, couldn’t pick the proper word from the assembled word bank. For a good long while, we simply modeled the right choice, conceiving of the exercise as intensive spelling and vocabulary training. After we pointed out the correct answer, we’d have him attach it with Velcro to the blank in the sentence. Over and over, we repeated this process, hoping that meaning might stick and that eventually syntactical relationships might become evident. While we saw signs of improvement, the going was very slow indeed—slow and erratic, with tiny bursts of insight and knowledge consolidation, followed by inexplicable setbacks.

In the Resource Room, where he spent one period per day, DJ moved through a series of stations. One involved the hand-over-hand tracing of his name or the execution of alphabet pages where he had to cut out a letter and glue it on the page and then color all of the pictures of the objects that began with that letter. One was a puzzle of some sort. Another was a picture with the shape of the corresponding word carved out. DJ had to spell the word by putting the correct plastic letter in the correct cut out letter space. This he could do errorlessly on his own, and then a device called “Leapfrog” would say the word out loud. A fourth involved one-on-one reading with the Resource Room teacher. Though DJ didn’t experience any genuinely explosive eureka moments, we felt as if we were laying a foundation: tediously, meticulously. Yes, his concrete was taking longer to set, but we looked forward to helping him frame the sturdiest of structures. It seemed as if a house was coming, or at least we thought it was. By the end of the year, Kathy noticed that DJ was focusing on learning tasks more easily, beginning to recognize new vocabulary/spelling words by the third or fourth time they had practiced them, and moving around the school and Resource Room more independently.

In many respects, second grade was a continuation of first. We added more words to DJ’s word banks (thereby giving him more choices) and, eventually, more blanks to his sentences. We encouraged him to point as much as possible, making sure to correct him before he closed the system. Where second grade differed from first was in the introduction of hand-over-hand typing. He’d use a labeler to do his work, a portable machine that printed out full sentences that could then be stuck to a piece of paper. Emily figured that DJ would likely continue to have finger dexterity problems and thus she believed that typing—not writing—would constitute his primary means of communication. She also thought typing would serve as yet another way to expose him to print. The keyboard would stabilize the location of letters and standardize them as well. From a practical standpoint, the machine was very convenient—much, much better than the Velcro system, as the worksheets that comprised so much of elementary school life no longer required the same tedious preparation.

It’s important to underscore that at no time did we think we were practicing facilitated communication, that controversial communication technique from the 1990s in which someone supports the hand, wrist, or arm of a non-speaking person with autism as he or she types. We knew that we were doing the typing, just as we knew back when we commenced the fill-in-the-blank exercises that we were answering the questions. We sought simply to model every aspect of the exercise through repetition and full immersion. We’d seen progress with the fill-in-the-blanks and, so, hypothesized that we might one day see progress with the typing. When we eventually did see significant progress, we still didn’t call it FC—not because we were afraid to stir up controversy but because our path to success had been so atypical, involving years of practice and explicit literacy instruction before we even expected the kind of results normally associated with FC. If, as the religiously inclined might propose, the average FC triumph was like the resurrection of Jesus on the third day, then ours was like the resurrection of Lazarus on the fourth or, rather, four hundredth day. It wasn’t really a resurrection at all but a slow coming forth to communicative life, as if the cave in which Lazarus resided were several miles long and it had taken him years to limp out. And yet, in emphasizing the gradual achievement of literacy, I need to make room for some sort of notion of a sudden, inconceivable burst—both with respect to the pace of DJ’s subsequent communicative achievement and, even more important, to the concomitant psychological awakening. Only after DJ had been walking amongst us for months and months did we begin to speak of facilitated communication.

With the typing, we continued to follow the principle of error-free learning. We’d read the fill-in-the-blank sentences aloud to DJ along with the possible answers and ask him to choose. We wanted to work on his oral comprehension while we worked on literacy. If DJ was wrong, we’d point to the correct answer, type it with him and then have him place it on the page. We’d star those questions he got correct on his own. If DJ pointed at four incorrect answers in a row, we assumed the information was too difficult for him and reverted to the cuing protocol used in the first grade. When DJ’s classmates began writing simple sentences and very simple stories, we’d do a version of the same with fill-in-the-blank sentences and word banks comprised of equally acceptable answers. This gave DJ a chance not only to complete writing assignments on his own but also to make choices—even if the choices he made he didn’t always understand.

In the Resource Room, the Edmark reading program focused on nouns: find the yellow car, the green car, the small car, the large car. After stabilizing the noun, it then stabilized the adjective: find the red car, the red apple, the red house, etc. Instead of worrying about the names of different parts of speech, we emphasized practical application. We took advantage of DJ’s ability to “find same,” breaking the category of “same” into smaller units of similarity and difference. After lots of practice, he could identify the verb in a grouping of, say, apple, go, and purple. In the Resource Room we began to leave three and four blanks in sentences or, for shorter sentences, to require DJ to assemble the entire sentence himself. He had some success with these tasks. By the end of second grade, DJ was able to stay in class with few, if no, breaks, provided that he was actively engaged. He was able to do the various exercises described, with the exception of the sentence assembly, with a seventy-five percent accuracy rate. He was also able, with minimal cuing, to use his Cheaptalk device, which Emily would load with lots of answer banks, to participate in class.

What did DJ’s progress amount to? Where were we? We hadn’t the foggiest idea. Could DJ move from rigid drilling, as in a foreign language course, to something like fluency? Would the rigid drilling help us achieve literacy but paradoxically reinforce his autism? Anyone even remotely familiar with autism knows about the infamous tics and obsessions. Maybe DJ would perseverate on Edmark exercises, insisting on finding “the red car, the red apple, the red house,” over and over. How to get him to the point of meaningfully expressive communication? How to get him to talk about his life and the feelings we knew he had?

By April, Ms. Leathers, the Resource Room teacher, and Mrs. Lohman reported that DJ seemed to be moving their hands when typing. He’d point independently to a word in his word bank and then initiate the typing procedure. They felt him guiding their hands to the appropriate keys. Suddenly, he was able to read a story and complete six to eight worksheets on it. The questions asked DJ to pick out relevant information: the color of the car, for example, or location of the hot air balloon. For the first time, DJ was answering “wh” questions with complete accuracy. Because we saw DJ first pointing to the correct answer in his word bank, we didn’t doubt for a second that he was guiding Ms. Leathers’ or Mrs. Lohman’s hands when typing, but we didn’t make a big deal of it. We focused on the cognitive accomplishment, and, familiar with his finger dexterity and hand-eye coordination problems, simply assumed that DJ needed this kind of physical help.

Again, we didn’t call this help facilitated communication, neither privately with each other nor publicly at school or in the community, though that’s what it was. It didn’t occur to us to ask DJ questions unrelated to the worksheets—about what he wanted to eat, for instance, or what he was thinking. I can’t entirely explain why, especially since I’d made such a fuss at his first IEP about including the goal of asking questions about his life. We were locked into our routine of using sign and pictures to determine DJ’s needs and using the labeler to work on his literacy skills. Perhaps we’d grown too accustomed to the absence of more sophisticated expressive communication from DJ, underestimating what might have been possible right—or should I say, write—then. We were still relying on fill-in-the-blanks, however, and we honestly didn’t think he could compose an entire sentence on his own. Still, we could have set up a worksheet that said: I feel a) sad, b) happy, or c) mad, and the fact that we didn’t bothers me to this day. His most passionate advocates were probably holding him back.

About this time, we noticed that DJ was showing more interest in his regular ed math teacher’s instruction than in the basic addition/subtraction money worksheets we were having him do with his aide. He literally seemed to crane his neck to see what was being written on the blackboard instead of concentrating on what was immediately in front of him. Early on, we’d decided to focus exclusively on literacy and had only just begun to give him math materials. Here, too, he shot forward—like some sort of spaceship assuming warp speed. He’d clearly apprehended the concept of place value on his own, for he started solving more complicated problems, embarking, it seemed, on a daring space walk in the thin universe of numbers. At the I.E.P in May, Ms. Leathers and Mrs. Lohman reported DJ’s progress and asked sheepishly if we’d ever consider just trying him out in the regular math curriculum. For the first time, school personnel were setting the bar higher for DJ than we had. It was quite a moment. We found it ironic that the subject we’d entirely neglected might turn out to be DJ’s strongest. His teachers for the following year, Mr. Abarr and Ms. Louden, were present at the meeting. Though apprehensive about the experience that lay ahead, they were open to it, and they asked what they could do to help. “Have your lesson plans ready in advance and expect DJ to actively participate in your classes,” Emily told them.

We spent the summer in Hilton Head at Em’s parents, where Emily continued to work with DJ on his alternative reading program, which she’d borrowed from the school. DJ looked forward to his daily reading lessons, completing five to six worksheets a day and taking only two days to complete each story. On a short trip back to Florida, we had lunch with our friends the Rifkins, who have a son with autism. Just home from a weeklong intensive seminar on using technology to access literacy for kids with autism, Margo inspired us to do more with computers. We planned to apply for a state-funded Gemini: a high-powered Mac with touch-screen and voice capabilities that cost about seven thousand dollars. DJ needed to be able to “speak” more than the pre-recorded messages on his Cheaptalk would allow.

The week before school began, he experienced his first expressive breakthrough. Up until this point, all of his worksheets involved either fill-in-the-blank comprehension tasks or sequencing tasks, not open-ended questions. Emily and DJ had been reading the program’s version of “Jack and the Beanstalk,” and they had arrived at the conclusion of the story where Jack and his mother sit enjoying their triumph. The last question on the last page surprised—and worried—Emily. Instead of asking for factual information from the story, it asked the student to imagine what the Mom might be thinking. At this point, DJ was still conveying his answers by pointing to words in word banks and adhering them to the page in the appropriate place. How could he possibly answer this question? Emily thought. She considered either skipping it or offering three valid ideas of her own from which he might choose. Before she could decide, DJ picked up his labeler and turned it on (something she’d never seen him do before). He took Emily’s hand and purposefully guided it from letter to letter until he had typed out: “where a dad.” The incorrect grammar, the obvious way in which this statement reflected his own life experience, and the fact that Emily had no idea what he was going to type (in the past, they’d simply typed his already identified answer) stopped her dead in her tracks. With tears in her eyes, she called me into the room and narrated for me what had just happened. I was dumbfounded. “Where a Dad?”—an exceedingly relevant question from a boy whose family life had been so unstable. “Wow, DJ!” I exclaimed, “wow!”

A week later, after he’d correctly solved a math problem, the worksheet asked him to explain his answer. To which DJ replied, once again picking up his labeler and taking hold of Emily’s hand, “becuse just.” So, DJ understood colloquial English as well, except he’d transposed the two words, producing that brother-from-another-planet translation effect that seemed like poetry. The fall was one long whirr of accomplishment. “What is a subway?” “subway is underbus,” DJ answered, either coining his own clever definition or simply failing to hit the space bar on the labeler. “What is a pyramid?” “opyramid us [is] sand triwangle.” This answer floored Emily and me—once, of course, we’d accustomed ourselves to the characteristic errors in his typing: in particular, hitting the key next to the one he wanted. We’d encountered these errors before, but now we had no idea what he was going to say. “A sand triangle” seemed as good a short definition of a pyramid as I’d ever come across; you could tell it was the product of a visual thinker—almost painterly its minimalist, compositional emphasis. “What is a mummy?” “kijng tut,” DJ answered. “What is a capital?” “big ciuty.” “What is a festival? “uit iws sa pwarty.” “What are monuments?” “detad people live there.”

How did DJ know the answers to these questions? Had he been reading before we knew he was reading–not only reading but thinking, processing, refining? His answers suggested something far different from rote memorization or rigid regurgitation: the expected mastery of someone autistic. Hyperbole can’t do justice to our excitement, our awe, at DJ’s achievements. Our friend Judy Barber, the district’s speech/language person, said in disbelief, “This isn’t supposed to be happening. The kid isn’t falling farther and farther behind; he’s catching up!” As excited as we were, we consciously decided not to bombard DJ with questions about his life. Before, we’d failed to move quickly enough; now we wanted to focus on integrating the labeler into everyday routines, careful about overwhelming him emotionally. But what was he thinking? I had to resist handing over the stacks and stacks of pennies I’d saved for precisely this moment—a whole piggy bank’s worth to make up for lost time. We’d let him choose when he wanted to weigh in on his past or present. He seemed to need to get used to this new ability or, if not the ability itself, the experience of reciprocal exchange in a non-school or school-related setting. He needed to get used to having unscripted conversations. Though he appeared genuinely pleased by his accomplishments, he also appeared to be more nervous than usual, edgier, at times even frantic.

By mid-fall, DJ was doing regular fourth-grade math, marveling everyone. On his first test he received a “B-,” but after that, nothing but “A”s. Mr. Abarr had started DJ out on a calculator but very quickly realized that he was doing the problems in his head. With a 100s chart he could simply point to the answer and then with assistance write it and place it on the page. One day in language arts, at the beginning of a unit on the Titanic disaster, when Miss Louden was trying to determine the kids’ familiarity with the event, DJ typed out, “There were rich people on the boat. There were poor people down below. I was poor person once.” (It’s one of the few things DJ’s typed that I don’t have, so I can’t reproduce his characteristic typos, but I saw the page and memorized the remark.) Everyone was stunned by what DJ knew of the less romanticized version of the incident and how he’d identified with the ship’s least fortunate travelers. When Miss. Louden asked the class what it would have been like to be a passenger on the Titanic, DJ typed, “Scared to die.”

How to account for a neurologically disabled fourth-grader with both class and existential consciousness? How did DJ know these things? How, with almost no training in math, could he do complicated addition, subtraction, multiplication and division problems in his head? How? How? How? How? Later, when I’d start investigating this phenomenon, I’d discover that nobody really had an adequate theory beyond a notion of the child with autism somehow storing information (without exactly understanding it) and accessing it once he or she had come to communicative life.

The day after Christmas, as I was preparing to leave for the annual meeting of the Modern Language Association, Emily had a conversation with DJ on his laptop. DJ had awakened at three in the morning and hadn’t been able to fall back to sleep. Em’s folks, who had purchased the laptop for DJ when it became clear that the more powerful Mac would take months to get and that he really needed something more portable anyway, were sitting in the living room watching the conversation unfold. Throughout the fall, they’d heard about DJ’s amazing progress but now they were getting to see it for themselves.

“What woke you up this morning?” Emily asked.

“adr A dreammmmmm,” DJ typed.

“About what? Do you remember?”

“i dont know,” he replied.

“My dream was about __________.” Emily hoped that the fill-in-the-blank procedure might help him to answer.

“a saaaad nityes”

“Your dream was about a sad night?” she asked. “What made the night sad?”

“hdeerd heard hide deaddddddddddddddddd,” DJ typed. He had a habit of depressing keys and watching the computer reproduce the letters endlessly. But DJ was also becoming upset, and when he was upset his typing faltered more than usual.

“What was dead?”

“giiiiirl,” he said.

“Did you know her?”


“What was the girl’s name?”

“eklki,” he typed.

“Sister Ellie?”


“In real life sister Ellie is OK. She lives in the Northeast,” Emily explained. “Would you like to write talk see her?” she asked.

“se33e,” he answered, letting out a loud shriek and starting to cry.

“Do you remember skating and swinging with her?” Emily possessed unfailing judgment, and she’d clearly decided this was the moment to pursue the past.

“ues,” DJ replied.

“Ellie is very nice.”

“when you were giiomg giuither [going get her],” DJ typed, now sobbing. So, he knew I was traveling to the Northeast and thought somehow I might return with his sister.

“You miss Ellie. She loves you very much.”


“when you ftherrrrrrrrrrrrff,”

“When you find her?” Emily clarified.

“findhergoinggither,” DJ typed insistently. If the house were a mine shaft, we were all falling through it—Emily, DJ, Rachel, Phil, and I. As impressive as the demonstration of cognitive competence had been, it was DJ’s heart that moved us most, his commitment to his sister, confirming what we’d always known: he missed her terribly.

Just before Christmas, DJ had produced his first story—his first sustained piece—about Frosty the Snowman and his pal Jimmy. The story concluded with the following lines, and we thought of them again when DJ inquired about his sister. If the story seems more composed than his customary communication, it’s because he worked on it endlessly. Every element of it is his; Emily and I simply asked him if a given word or sentence was correct, and slowly but surely, he came up with this:

They were standing on the dock, standing and looking at the stars. They turned and ran away. They flew home. They hugged, then waved goodbye. They were sad.
Jimmy is dreaming about Frosty. He is sad because Frosty i melting. Jimmy is going to miss his friend Frosty.

The deep longing in these utterances and their obvious resonance with DJ’s life had stunned us. I was particularly impressed by the syntax of the first line (a construction I’d been trying to teach my creative writing students). It fixed the two characters on the dock in a posture of earnest contemplation, the way that an image in a poem might. “What’s the meaning of it all?” “Why is there loss?” the story inquired, half-expecting the stars to provide an answer.

Miss Louden conducted a creative writing workshop with her class, and one of the students responded to DJ’s story with a suggestion: in effect, that the problem of Frosty’s melting ought to be introduced earlier in the narrative. DJ went bananas, screaming, hitting his head. When Mrs. Lohman walked him out of the classroom and calmed him down, he typed on the computer, “dont want yelp [help] its my story.” Even Mrs. Lohman, who had been struck, delighted in the pride DJ was showing in his work. Emily joked that DJ took after his father. While getting an MFA in poetry writing, I’d found receiving criticism similarly unbearable.

It had taken DJ forever to write the story. The one-finger typing, the autistic fading in and out, the process of asking for clarifications and corrections, the multiple drafts—all of it made for very slow going. Miss Louden and Mr. Abarr were terrific about granting extensions. They were terrific in general, waiting for us at the door when we picked DJ up to tell us about his latest accomplishment. They always had their lesson plans ready well in advance so that Emily could do the modifications. Mr. Abarr worked with DJ sometimes one-on one, as did Miss Louden. Miss Louden learned lots of useful sign language, incorporating it into the daily routine. She had the class, for example, sign the “Pledge of Allegiance” each morning. She also used the finger alphabet in spelling exercises. Both frequently called on DJ in class. For the first time in Iowa, he seemed like a fully active participant in his regular ed classes.