Chapter 1:
“And the Bad News Is”
In this chapter I recount the experience of my
daughter’s first developmental evaluation when she was a week shy of two years
old and the reasons for it. The assessment team concludes that Meaghan’s
delays are pervasive rather than specific (having only to do with her lack of
speech). While she displays many of the atypical and stereotypical
characteristics of autism in her play and behavior, the consensus is to hold off
on a definitive diagnosis and leave it as a case of “funny wiring.”
Chapter 2: “One Test After Another”
This chapter deals with my follow through on
the Developmental Evaluation Team’s recommendations. Meaghan undergoes a CAT scan, EEG, blood work,
a hearing test and vision screening. As test after test finds nothing amiss with
the observable structure or measurable activity of her brain, with her genetic
make-up, vision or hearing, my confusion mounts. How could so many factors be
normal, and yet my daughter not be?
Chapter 3: “You Can’t Make Me”
The bulk of this chapter deals with my
struggle--and that of her early intervention teachers--to get Meaghan to attend
to what we are trying to teach her. Examples are given of her low frustration
threshold, of the inconsistency of her day to day performance, of her early
perseverative tendencies and of her utter lack of interest in learning anything
new. Her teachers advocate sensory integrative therapy, with lots of physical (vestibular)
stimulation, as the way to help Meaghan’s brain properly process the
sensations passing into it, which would, in turn, help her learn to play and
speak. Who would have guessed?
Chapter 4: Did She Say “That”?
Armed with the suggestions of her early
intervention teachers, I redouble my efforts to “make Meggie better.”
Examples are given of vestibular activities at home, at the beach and at therapy
sessions. At her speech sessions Meaghan is taught to sign. She begins to
imitate hand gestures; then one day adds sound to her gestural imitation, so we
know she is capable of speech. A week before Christmas Meaghan utters her first
self-initiated word, “that,” while pointing to a bag of cashews in her
father’s hand. We think the worst of our problems are over.
Chapter 5: From Bad to Worse
Another EEG reveals that Meaghan has been
having seizures or spike activity in the parietal and temporal regions of her
brain. She is put on Phenobarbital, a medication that transforms her overnight
from a docile child into a hyperactive holy terror. Follow up blood work reveals
there is way too much Phenobarb in her system. We lower the dosage and she calms
down to the point of lethargy. New Year’s eve she spikes a fever of 106
degrees, which lasts for four days and nights. We are beginning to fear for her
life when the debilitating fever finally breaks. That night I hear a soft voiced
“Mama” coming from her room. I get up dozens of times in response to her
calling my name, but consider exhaustion a small price to pay for this wondrous
gift of love, trust and recognition she has finally given me.
Chapter 6: With a Grain of Salt
We switch neurologists and seizure controlling
medications from Phenobarb to Tegretol, but the deleterious side effects of the
former are still evident as Meaghan undergoes a second round of evaluations in
preparation for starting preschool. The lowest point: in the space of one hour I
am told by the mental health examiner that my daughter is autistic, and by the
developmental examiner that I might well hear the word “retarded” down the
line. A twelve-month program in a highly structured, behavior-oriented, language
and cognitive-based preschool classroom is recommended.
Chapter 7: Knowing Right from Wrong
In this chapter I describe the various
classrooms I visit in my school search. The only one that comes close to
fulfilling the recommended criteria is the May Center, a behaviorally-oriented
preschool for children with autism. Our school system is not thrilled about
having to fund an expensive private placement but, as they have been unable to
come up with an acceptable alternative, there is little room for debate. Meaghan
and I are scheduled to begin the May Center home program; a pre-requisite for
school attendance, on her third birthday, the day after Easter Sunday.
What's Going On?
Early Learning and Education
This
What's Going On
section answers the following
questions:
1. What neurological factors influence early
learning in both typical and autistic children?
2. Is the core neural connection forming
problem in autism a prenatal or postnatal occurrence, and what might cause it?
3. As far as education and autism, is earlier
necessarily better?
4. How do the special needs of autistic
children differ from the norm in regard to early intervention?
5. What type of early education is most
effective for young autistic children?
6. What type of educational program is best for
older autistic children?
7. Why does learning sometimes become easier as
an autistic child gets older?
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Chapter 8: Coming on Cue
The home program gets underway. Ruth Kaplan,
the May Center home therapist, will come every weekday morning from nine until noon. I
learn that the essence of behavior modification is to attend to or reward the
positive and ignore the negative. Consistency in doing this is essential. We
begin by teaching Meaghan compliance. She must do what we ask, the first time we
ask it, without fuss or hesitation, if she is to earn our praise and attention.
Chapter 9: Learning My ABCs
In the beginning of this chapter I briefly
discuss the ABC context of behaviors, and how it is important to identify and
alter either their A (antecedents) or C (consequences) to prevent problem
behaviors from recurring. A key component of behavior modification is the
replacing of negative behaviors with alternative positive play or functional
skills, which is where Ruth’s expertise comes in. Ruth teaches me how to teach
my child. Every skill or task to be learned has to be broken down into small
steps -- to set the stage for success. I give examples of how this training works
and explain why it works; how it takes into consideration the unique mind set
and learning style of the autistic child.
Chapter 10: Step by Step
This chapter describes a typical day of home
teaching. I tell how we implement programs and run trials to teach Meaghan motor
imitation, body parts, vocabulary, object ID, shapes and colors. I am reassured
about my daughter’s ability to learn, she just can’t learn like other
children. Her “funny wiring” makes it difficult for her to discriminate,
interpret and categorize information in a flexible, contextual manner. So, in
order not to frustrate, confuse or overwhelm her, we set modest goals and build
upon them gradually and sequentially.
Chapter 11: Beginnings and Endings
Meaghan begins to attend class at the May
Center in the afternoons. The focus of our morning home program shifts from
pre-academic work to toilet training. I describe the program we use and the
discipline it takes to adhere to the exhausting regimen. By the end of August
Ruth’s work is done. A re-evaluation of Meaghan’s developmental status is
encouraging. In the pre-academic area, she has progressed one year in four
months. Her language skills have advanced nine months, and her self-care skills
are at age level. I am aware, however, that we still have a ways to go and that
there is a time constraint. I’ve been told that the wiring in a child’s
brain is only malleable up until the age of six. After this, all bets are off.
Chapter 12: Too Good
To Last
In this chapter I discuss Meaghan’s need to
“keep on the move” whether walking or riding and her penchant for bolting.
Meaghan has begun to “tune in” more to words and to combine words into “I
want” phrases, but a speech evaluation concludes that her hearing remains
largely selective and that she has yet to develop an understanding of the
communicative function of language. An occupational therapy evaluation conducted
at her school determines that Meaghan exhibits sensori-motor integration and
processing delays that are interfering with her ability to organize and
interpret information through touch and movement. This problem is at the heart
of her problems with language and looking, although I don’t realize it at the
time.
Chapter 13: Doubts Creep In
A vacation to Sanibel Island concludes with a
celebration of Meaghan’s forth birthday and confirmation of my second
pregnancy. As I have based my decision to have another child in large part on
Meaghan’s successful adjustment to full day schooling, I am concerned when her
progress at the May Center begins to taper off. Although she continues to make
adequate headway in the pre-academic, physical and self-care areas, socially we
are at a stalemate. The contrast between her mystifying fixations and the
intentional play and interaction of her typical peers in the integrated
classroom where she spends her afternoons is pronounced. Behaviorally, Meg has
regressed to testing and aggressing, problems compounded by the frequent
turnover of teaching staff.
Chapter 14: Coming to Terms
Our second baby is born, a boy we name Michael.
As boys are four times more likely to develop autism than girls, we are
concerned about him following in his sister’s atypical footsteps, but this
concern is overshadowed by the deterioration of Meaghan’s classroom
performance. She has begun having inexplicable mood swings, alternating between
extremes of feistiness, silliness, crankiness and tearful sadness. Her behavior
is as erratic as her moods. One day she is calm and compliant; the next, willful
and impulsive. I am beginning to come to terms with Meaghan’s autism. I
understand that she lacks the ability to self-regulate her emotions and
behavior, just as she lacks the ability to play and talk like other children.
All her play and speech is rote, rehearsed and repetitious. I give examples. She
cannot learn to use or understand words in a flexible manner because she
processes the words in the sentences she hears as one big clump or “gestalt.”
Chapter 15: What’s in a Name?
Fortunately, Michael shows few signs of being
negatively influenced by his sister’s erratic behavior. At one year, his
development appears to be on track, but we can’t rule out the chance of a
regression into autism until he reaches thirty months. We can, however, clear up
our remaining uncertainty over Meaghan’s diagnosis and prognosis. To this end
we bring her into the National Birth Defects Center in Boston. After a thorough
examination the doctor there concludes that, while Meg does fit into the autism
spectrum clinically, a more accurate diagnosis would be Pervasive Developmental
Disorder. Follow up blood and urine tests confirm the doctor’s negative
genetic and metabolic hunches, and an MRI procedure shows nothing wrong with the
“observable architecture” of Meaghan’s brain. So, while we still have no
clue as to a cause and little hope of a cure, we do at last have a definitive
label to attach to our daughter’s condition.
What's Going On? Atypical Development and Thought
Process
This What's Going On section answers the following
questions:
1. Why are toddlers with autism able to walk
but not talk?
2. How might the early or late onset of autism
influence whether or not a child speaks?
3. Why is autism often so belatedly diagnosed, and how can you tell if a child is at risk for developing autism?
4. How does the autistic thought process differ
from the norm?
5. What is a theory of mind and how might the
lack of it affect the autistic thought process?
6. How might a lack of or limited theory of
mind cause or compound problems with interaction and communication?
7. How does the fragmented processing of sensory impulses factor into the restrictive and repetitive behavior and thought patterns characteristic of autism?
8. What is the nature of the autistic spectrum
and how does knowing where a child falls on the continuum help to determine
prognosis?
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Chapter 16: She Has a Way About Her
More staff reshuffling at the May Center along
with the levelling off of Meaghan’s learning prompts me to seek out another
placement. One option proposed by my school system is a local collaboration with
the Boston-based Language and Cognitive Development Center (LCDC). Although I
have reservations about this yet to be launched pilot program, I agree to bring
Meaghan into Boston for an evaluation, which proves a real eye-opener. Unlike
all the other evaluations Meg has undergone, in this one (which I describe in
some detail) there are no right or wrong solutions; no ultimate score that would
reflect how well or poorly my daughter measured up to the norm. The intent is
rather to figure out how Meg “ticks,” how she processes and interprets
information and how readily is she able to learn from experience and repetition.
The Millers, cofounders and developers of LCDC, conclude that, while Meaghan has
some good skills, few of her actions show intention. Like her language, they are
not solidly grounded in experience. They assure me that they can remedy this in
their program.
Chapter 17: The Theory Behind the Practice
The bulk of this chapter discusses the unique
theories and insights that underlie the Language and Cognitive Developmental
approach to teaching children the Millers characterize as “disordered.” It
tells how their sphere and system-based intervention strategies work to
transform reflex responses into intentional, functional actions and behavior.
How the language of disordered children often becomes stuck at the transition
between sign and symbol stage functioning, and how words must be “freed up”
from their physical referents and understood as symbols before they can be used
flexibly and intentionally.
Chapter 18: Do as I Do, Not as I Say
This chapter focuses on Meaghan’s and Michael’s
sibling relationship. At eighteen months, Michael is able to lead the way to
interaction. He’s her role model for instigating “games,” but she’s his
role model for how they play them. At this point they are almost on a par
language-wise, although Michael’s vocabulary is more varied and flexible.
Meaghan’s words remain context-specific; inextricably linked to her
involvement with specific objects. I give examples of this and other unusual
aspects of her developing language. Realizing that I can no longer safely and
simultaneously monitor both my children in public parks and playgrounds, I
request respite help and Jeanette Hyde comes into our lives.
Chapter 19: It’s in the Hair
At Jeanette’s suggestion I bring Meaghan to a
woman, Virginia Lucia, reputed to work wonders for allergy sufferers. A sample
of Meg’s hair is sent to a laboratory in Dallas, Texas, Trace Elements Inc.,
and a comprehensive metabolic profile is sent back. The most significant
finding: Meaghan’s calcium and magnesium levels are critically low,
exacerbating her anxiety and hyperacitivity. We are told to eliminate all wheat
and grain products as well as salt and sugar from her diet (no mean feat), and
to give her unlimited amounts of dairy products along with an assortment of
supplements. While we note some improvement in Meg’s temperament initially, by
September her attention has deteriorated and some troubling behaviors have
resurfaced. Another hair/tissue mineral analysis confirms Virginia’s
explanation that Meaghan is merely detoxing.
Chapter 20: Promise vs. Practice
In this chapter I write of my mounting
dissatisfaction with Meaghan’s classroom situation. Much of what the Millers
have promised is not being delivered. Her classroom experience bears little
relation to the insightful, practical work I’d observed during her evaluation.
There is entirely too much “down time” and entirely too little structure,
stimulation and education. As a result, Meaghan’s behaviors continue to
deteriorate. She has developed a fetish for getting out of things: her clothes
at school and her seat belt on the rides to and from school. Frustrated with Meaghan’s school situation, I
begin doing more work with her at home, focusing primarily on her visual-motor
skills, pretend play and reading. I recount strategies I use to work with her.
Chapter 21: Merry
Mayhem
Still in the throes
of detoxing for the holidays, Meaghan’s behavior is more unpredictable than
ever. What is predictable is that she won’t be at her best when we are out
socially. I recount the dual disasters of Michael's first birthday party and the
family Christmas Party. Much as she wanted to be around others, being around others catapulted
Meg's nervous system into a state of overdrive; a state that made it virtually impossible for her to have any control over her behavior. During this phase I had to be extra vigilant because Meg had developed a penchant for grabbing hold of any untended soda cans or glasses, upending them and spilling out their contents.
The nadir of the holidays comes Christmas Eve, when she disappears
from the an aunt's house on impulse.
Chapter 22: A Parting
of Ways
Winter passes into spring and the gulf between
the promise and practice of Meaghan’s LCDC education remains unbridged. I feel
that, rather than treating my daughter’s disorder, the Millers are catering to
it, allowing her tantruming and provocative behaviors to go on month after month
with no redress. Meaghan’s neurologist agrees that she has “outgrown” her
LCDC placement and gives us the go-ahead to begin weaning her off Tegretol, as
she has been seizure free for over two years. Virginia is delighted with this
news, but I no longer credit her nutritional wizardry. After nine months of
sticking to a difficult wheat-less, sugar-less diet and forcing hundreds of
dollars of supplements down my daughter’s throat without achieving a “perfect”
metabolic profile or any behavioral improvement, I am ready to call it quits. I
am growing wiser.
Chapter 23: About Behavior
As the title suggests, this chapter focuses on
behavior. One thing can be said with certainty about autism; it manifests itself
in different ways in different children at different stages of development. Most
autistic behaviors are internally driven. I describe in some detail Meaghan’s
various sensory compulsions and sensitivities--the earliest manifestation of her
autism. The good news is that most of these early sensory driven behaviors
diminish with time as the senses mature. The bad news is that they are often
replaced by far more challenging testing behaviors, as children emerge from the
self-absorption of toddlerhood and become more aware of, confused by and
frustrated with their processing limitations. Testing behaviors have a sensory
basis in that they are often due to excess anxiety or arousal level, but they
are also meant to be attention-getters, particularly in situations where a child
is being understimulated (e.g. Meg’s classroom shenanigans).
What's Going On? Social Behavior, Empathy and Emotion
This insight section answers the following
questions:
1. Why is the social aspect of behavior so
difficult for people with autism to master?
2. Is there a difference in the social behavior
of a child with autism and a child with PDD?
3. How does a lack of empathy compound the
problem of learning to behave acceptably?
4. Why do people with autism often have such
difficulty expressing and understanding emotions?
5. What strategies are most effective in
helping individuals with autism with social adaptation?
6. What changes must society make in order to
better accommodate its autistic population?
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Chapter 24: A New Beginning
This time my school search narrows down to the
Boston Higashi School in Lexington. I have read up on Daily Life Therapy, the
philosophy on which the school operates, based on its founder’s belief that at
the core of self-control is self care. DLT’s focus is on stabilizing emotions
and instilling self-confidence and independence, and I reason no child is more
in need of this type of bolstering than my daughter. I describe our visit to the
school for the Spring Open House. I am impressed by the normalcy of the
classrooms and the energy and enthusiasm of the teachers, as well as by the
emphasis placed on high expectations. Our application is approved by the
admissions committee, and Meaghan begins her third school experience as a
Higashi day student in June of 1992.
Chapter 25: Against the Odds
This chapter tells of all that Meaghan has
learned over the years she has spent at Higashi, and how she has learned it. I
write of how her auditory learning style has been taken into consideration in
all that she has been taught, with physical prompts faded to verbal cues, which
are reduced and eliminated over time. Years of exposure to the physical and
visual demands of her Higashi education have virtually eliminated Meg’s
problems with looking as well as her physical timidity. As her vestibular system
has matured, so have her motor planning skills and her ability to learn. An
important difference between her Higashi experience and her experience in
previous programs is that more has been expected of her. Without one-on-one
supervision, she has been forced to become more independent, to rely more on her
own instincts and abilities, and this self-reliance has enhanced her
self-confidence.
Chapter 26: Physical Feats
This chapter charts Meg's physical progress. Since beginning at Higashi,
her physical coordination and confidence have increased ten-fold. She is able to roller skate, peddle a bike, jump on a pogo stick, walk on stilts, ride a unicycle and perform gynmastics -- no small feats for a child who was once wary of any gross motor exercise. Because the exercises are based on principles of sensory integration and stimulation, Meaghan’s mastery of them has benefited her mentally as well as physically, by kicking the sluggish nuclei in her vestibular system into gear. Because these nuclei are now operating more efficiently to integrate the information from all her senses, her brain is functioning better, her thoughts are more organized, and she has developed a better sense of herself and her abilities overall.
Chapter 27: All Work and No Play
In this chapter I update Meaghan and Michael’s
sibling relationship. Although he cares deeply for his sister, as he has grown
older Michael has grown more impatient with her immaturity, with her hanging
around with him. I marvel at the lengths to which his imagination takes him in
his play. Sometimes I think he got a surfeit of all the things his sister lacks.
He is always envisioning and daydreaming about life beyond the here and now,
while she struggles daily just to cope with the here and now. I write of the
ways Meaghan is able to occupy herself outside, while inside her ability to
amuse herself is limited. Although she willingly joins me in activities, she has
virtually no constructive independent play skills. Her favorite “toys” are
little objects that she keeps precisely arranged on her bedside table. Because
these “toys” mean so much to her, I use them as incentive to insure her
cooperation. She earns or loses them according to how well she behaves; a
tangible reward strategy that works remarkably well.
Chapter 28: “Now it is Now”
In this chapter I relate how I set about
remedying Meaghan’s considerable problems with articulation and with shaping
words into sentences of her own making by teaching her to read. I discover that
she has an unusual affinity for spelling and letter sounds, so I have a leg up
in teaching her to sound out words phonetically. The rote pairing and
association problems that plague her speech are evident in her reading as well.
She tends to associate the first letter of a word with other words beginning
with that letter, so a sentence like “Now it is night” comes out “Now it
is Now.” In fact, Meaghan is unaccustomed to thinking about many phrases or
word combinations as having meaning, so she is not looking to come up with
meaningful words, she is merely trying to come up with the right combination of
sounds that will “get her off the hook.” But, little by little, her
attention to the words on the page begins to prevail over her reliance on the
words in her mind. She begins to incorporate more words into her speech and to
speak more clearly.
Chapter 29: The Rote and the Repetitious
This chapter focuses on the unique
characteristics of my daughter’s language development. Meaghan was, for the
most part, a passive communicator. She answered questions; she rarely asked
them. She never commented or expanded upon any answers she gave, and most of her
replies were rote and rehearsed. When I wasn’t actively soliciting her speech,
she tended either not to use it or to use it very poorly. Her spontaneous
utterances consisted primarily of a verbal shorthand of requests and
idiosyncratic sayings, bizarre phrases based on her unique associations. The
extent to which I was instrumental to her ability to communicate, to access all
the language stored in her brain, seriously concerned me. As long as she could
count on me to cue her, she didn’t have to think too hard about how to use her
words. She could rely on my mind rather than her own. The only way I could
conceive of weaning her off this crippling dependency was to start using written
cues.
Chapter 30: See and Say
In this chapter I write of specific strategies
that have proved useful to me in helping Meaghan use her language more flexibly
and conventionally. My foremost recommendation is to expose a child to as much
written language as possible early on. As most autistic children are visual
learners, this reinforcement of verbal input with visual backup, either with ‘scripts’
or simple phrase cues, helps them to focus attention as well as to recognize and
extract meaning from individual words and to generalize word usage. Also,
because of their restricted interest, children with autism often don’t know
enough about enough to be able to converse in a typical manner, so it is
important to keep broadening their store of general knowledge. I suggest ways to
go about doing this.
What's Going On? Communication and Conversation
This insight section answers the following
questions:
1. What obstacles do autistic children need to
overcome in learning to use language conventionally?
2. What factors contribute to early word
deafness?
3. How do autistic children overcome word
deafness?
4. How does the lack of concern for meaning or
sense-making impact autistic speech?
5. What might account for the lack of
originality and spontaneity in autistic speech?
6. Why do some people with autism never develop
speech?
7. Why is carrying on a conversation the
ultimate challenge for individuals with autism?
