…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?”
“yes”
“What was
the girl’s name?”
“eklki,” he
typed.
“Sister
Ellie?”
“yes”
“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.”
“yesw.”
“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.
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