Autism Speaks Through Her Eyes

By: Emily Tomas

Submitted in Partial Fulfillment of the Requirements for a

Degree in Writing

Journalism - Freelance

May, 2008

Instructor WRT 465/ Thesis Advisor: Dr. Patrick Ryan

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Thesis Abstract

A dramatic glimpse into a mother’s struggle takes winding turns over the

years since her son’s birth in this human- interest journalistic piece. In a never-

ending battle with the state of Connecticut to give her autistic son the best

treatment available, Julia McGarry finds inner strength to overcome her greatest

weakness.

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Table of Contents

Part 1: SID…………………………………………………………………………4

Part 2: A place known as home……………………………………………………8

Part 3: Never a dull moment……………………………………………………..13

Part 4: A relentless battle………………………………………………………...16

Part 5: Not quite what the doctor ordered………………………………………..17

Part 6: What’s your sign?.………………………………………………………..19

Part 7: A Cause for Concern……………………………………………………..20

Part 8: The Medicine Cabinet……………………………………………………21

Part 9: When do the rights outweigh the wrongs?……………………………….24

Part 10: At (your name here) Service....................................................................27

Part 11: Fate is a matter of finance………………………………………………34

Part 12: The cup half […] ………………………………………………………37

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Autism Speaks Through Her Eyes

Story and Photograph By: Emily Tomas

Part 1: SID

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Her fingers firmly gripped her knees as bitter sweat suffocated her body.

Her heart was clenched, fingers numb, as she awaited her innocent child’s

imminent sufferings.

“I knew there was something wrong, but I was in denial,” she said. “When

I found out, I mourned for a few days, but then my adrenaline ran. I saw a

problem with my child and I needed to fix it from day one.”

Julia McGarry, a loving and devoted mother of two could never have

prepared herself for the despairing grief she was about to encounter. Her son

Steven was diagnosed with Sensory Integration Dysfunction in conjunction with

Autism at the age of two, and has had difficulty adapting to the world around him

ever since. Now, at age ten, he still cannot verbally communicate or otherwise

express himself, suffers constant pain from recurring infections, and cannot

distinguish what is gravely harmful to him.

Steven’s condition is rather complex once one slices through the many

generalized layers of autism. Essentially, autism is a developmental disability

(resulting from a neurological disorder) that severely affects the normal

functioning of the brain, pertaining specifically to areas of sensory interaction.

Most autistic individuals have a distorted interpretation of reality, as if viewing

the world through a cola bottle-- everything around them is visible, but

convoluted when mentally absorbed.

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The mid-brain and brainstem regions of the central nervous system are

primary centers in the processing channel for sensory integration. Basically, these

areas of the brain are involved in processes including coordination, attention, and

arousal, effecting motor skills as well as metal capabilities. After sensory

information travels through these centers, it is then routed to brain regions

regulating emotions, memory, and intricate cognitive functions. This type of

disorder leads to several abnormal behaviors which constantly impede on

everyday life, for both the individual and those around them. The following

images depict certain brain functions affected by autism:

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Steven has obvious tendencies attributed to this abnormality that he

displays on a regular basis. His family is no longer taken aback by such behavior

like waving his arms recklessly, excessively spinning beneath ceiling fans,

hanging himself upside down and belching screams of agony for what is often

misunderstood. He climbs on anything he can mount himself on, and doesn’t rest

until his chest is pounding from the lack of breath. The visiting of public areas has

become a matter of necessity with the incredible hassle of chasing Steven down

what seems like an infinite array of aisles until finally receiving stares and

muffled comments like, “there goes another rambunctious child that can’t be kept

under control.” There’s only so much of that one can take. Steven, it seems, has

become a prisoner in his own body.

According to the Centers for Disease Control Prevention, Autism affects a

daunting 1 in 150 births and is rapidly on the rise at 10-17 percent yearly. Though

autism confines individuals’ capabilities, it is not restricted to whom it touches for

it, “knows no racial, ethnic, or social boundaries, family income levels, lifestyle

choices, or educational levels, and can affect any family and any child”

(www.autism-society.org). With the risks of increasing diagnosis, and the

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obscurity of its predictability, autism has become the modern plague across the

world (now that the general public has been educated of its existence).

Part 2: A place known as home

A charming town wrapped in a polite ambiance struck Julia’s attention as

a suitable place to raise a family. Lots of children in the surrounding area with

schools and playgrounds nearby and a lovely town green with specialty shops, it

seemed untarnished from the cruelties in the world she was used to. She decided

this New England town would be the place she would finally call home.

Julia’s townhouse has consumed memories from over the years that could

only be understood by those who have endured the tribulations themselves. Her

husband Michael is a clinical nurse supervisor and is seldom home due to taxing

hours. Apart from Steven, Julia has a seven-year-old daughter, Olivia, with the

personality of a spunky Hollywood actress crammed into a petite three feet, seven

inch frame. Her vast chestnut eyes speak sincerity with every glance,

complimenting her dulcet voice that never reaches a decibel unbecoming of a

little lady. Olivia is never hesitant to lend a hand for those she cares for. She

assists with small duties, cleaning up scattered toys, preparing snacks, and things

of that nature. She is beyond her years in self-sufficiency, namely because she has

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to be—Steven’s condition has made it inevitable. Olivia is always keeping a

watchful eye on Steven and promptly reports when he is engaging in alert-worthy

behavior.

The ‘typically developing’ siblings of autistic children are, in fact, the

furthest thing from typical. Often, they are wiser and more mature than

their age would suggest. And they have to be, given the myriad

challenges they face: parental responsibility; a feeling of isolation from

the rest of their family; confusion, fear, anger and embarrassment about

their autistic sibling. And on top of all of it, guilt for having these feelings

(Goehner, Autistic Kids: The Sibling Problem).

Olivia has a way of capturing attention from everyone around her, but in a

way that will never grant her the same attention Steven receives daily. They have

different needs, and that is one element that will never change.

As with most children, Olivia is often asked the age-old question, “What

do you want to be when you grow up?” She replies, “I wanna be a doctor.”

“Why, Olivia?”

“I wanna help kids like Steven to get better. I want to find a cure.”

Although Olivia seems to struggle in forming a relationship with her

brother, she relentlessly speaks to him in attempts to communicate on some level,

while showering him with tender hugs and kisses.

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“It’s amazing how mature my little girl is,” Julia expressed while gazing at

her with a warm smile, “she’s such a great help to me.”

Julia’s daily routine consists of several obstacles, with some days far more

frenzied than others. Every morning she wakes up thinking, “What type of kid is

Steven going to be today? How hard is the day going to be?”

The slits of her eyes slightly part as the day begins to break. Seconds later

she hears Steven rounding the corner and stampeding down the steps. Julia swipes

her fingers across her alarm clock which reads, “5:00 a.m.” and deeply inhales

before throwing her legs over the edge of her bed. 3,600 lingering seconds later,

she prepares her children for that public domain where they’re supposed to learn

valuable standards and apply them in life, known to some as school. She tries to

hold on to her faith that the teachers will get through to him eventually, but each

day they’re unsuccessful, it puts more strain on her heart.

For the next few hours her mini van becomes her saving grace. She runs

limitless errands, takes her mother to see nearly every medical professional in

Fairfield County, and meets with Steven’s specialists to discuss any progress he’s

made in a transition toward normalcy (if any). More often than not she picks

Steven up early, around 1:30p.m. because he is either too ill or “uncontrollable” in

class, as the teachers label him.

Steven routinely has appointments to go to as well, such as with his

primary physician, psychologists, and other specialists. As the doctors begin to

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speak, Julia tucks in her bottom lip and bites down, making every attempt to hold

back her tears as the doctors throw more foreign terminology at her, that plainly

means they don’t have the slightest anticipation that he will recover, but they will

gladly take her money at the door.

As the night falls, Julia approaches her kitchen cabinet, pulls it open, and

shovels through an array of small orange cylinders until she has found the two

that both save and hex her every night. One is a prescription for Steven’s

insomnia, called Tresadone and the other for his ADHD called Tenex, which

improves his focus about 80 percent. He was diagnosed with these supplemental

disorders four years ago by his psychiatrist. Prior to taking medication, Steven

only slept between two and five hours a night, but now sleeps between six or

seven, depending on whether or not he’s ill with whatever viral infection is

spreading around. He’s susceptible to just about anything that will make him

wallow in a state of misery. At the same time, the medication takes hold of him.

They’re no longer small luxuries to guide him to a state of dreams or relaxation,

but rather a necessity to get rest the body requires. Afterwards it will be time for

his bath. Julia will have to be careful not to get water in his ears because of his

surgical plugs; she couldn’t bear to put Steven through the agony of having them

replaced yet another time.

Around 10:00 p.m. Julia lies in bed, thoughts racing though her mind at a

constant pace. Every night she interlocks her fingers together in a desolate grip,

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praying that Steven will rest and be better in the morning-- and every morning

thereafter. She turns on the TV. Maybe this will take her mind off of it. Maybe

not. She turns it off and rests her body on its side. She closes her eyes in hopes for

a fresh start when she awakens.

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Part 3: Never a dull moment

After this day, she would never be the same. With a tug and a sigh she

curled herself into her dream-laced blankets. She just needed one more second of

peace, of rest, of hope. At last she arose and gazed at the frosted daylight from her

chilled window of desperate prosperity. Snow veiled the ground with a crisp

inviting glow.

That day was February 9, 2003, far from an ordinary day. Julia awoke

unaware that what was to come, would burn into her memories forever.

“It was a day I’ll never forget,” she said.

Julia went to take out the garbage early that morning, which was no more

than 20 feet away from her townhouse. With every step she reviewed what she

would need to do for the day; doctor’s visits, grocery shopping, meeting with

therapists, cleaning, cooking, more and more appointments… the list was infinite.

When she returned, a feeling rose from the core of her gut into her throat- one that

constricted her breath and made her heart plunge from her chest. She hysterically

searched for Steven (only five-years old at the time), who was nowhere to be

found. She panicked. The police department was called instantaneously, and soon

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the entire neighborhood was frantically searching for him. Within the hour he was

found a few miles away at a deserted baseball field by a couple residing nearby. A

puddle followed him with every step, his socks drenched from snow and his lips

smiling with a quiver. But Steven wasn’t fazed by it.

It took some time for Julia to recover from the extreme anxiety she

endured that day, but it served as a vital reminder to always keep a vigilant eye

open.

Steven has managed to engage in other precarious behaviors (elsewhere),

but mostly in venues where several adults are specifically responsible to teach and

keep a watchful eye on children. He was recently enrolled in the Bethel Berry

Elementary School, where his teachers often requested that he be picked up early

due to what they considered, “unmanageable behavior,” or “chronic ailments.”

One particular incident involved an injury that occurred at school, where

Steven broke his ankle at the playground by jumping off the tallest slide, and

wasn’t offered emergency care by the school. Julia was informed an hour and a

half after the injury occurred, and in order to deny negligence, the school

insinuated that Steven had already come into school with that injury. Without a

moment’s delay, Julia rushed Steven to the emergency room at Danbury Hospital,

where he was placed in a cast for six weeks-- a visit for which she had to pay.

Thus far, Julia has brought Steven to the emergency room 52 times, due to

other injuries: the croup, asthma attacks, high-pitch fevers, and ear infections.

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Evidently, the public school system does not have sufficient aid for

someone in Steven’s condition, or a staff qualified enough to teach him the skills

he needs to excel, or even function in life; communication: speaking, writing,

reading, body language, facial expressions; motor skills: tying a shoe, playing a

sport, even going to the bathroom—Steven is supposed to interact with his

surroundings like the other kids, but the teachers can’t seem to understand why he

doesn’t. A mother can only do so much: offer love, guidance, and support while

enforcing what he learns from professionals in this field. But, the reality is, that

type of assistance is unbelievably costly, and for a family of five under one roof,

with one main source of income, it is nearly impossible to afford.

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Part 4: A relentless battle

Just a few years ago, Julia was fighting the state for funding of her child’s

education. She had a case assembled with her attorney, to petition for the tuition

and transportation for a private school, “The Foundation School” in Orange,

Connecticut, completely funded by the town of Bethel, as well as a five-week

summer program. This came to an outrageous figure of $63,000 each year along

with an additional $35,000 for bus services.

The Foundation School instructs students beginning in elementary school,

all the way to high school. They not only focus on education, but therapy as well,

working simultaneously to produce exceptional results. The verdict was disclosed

in October of 2006 in her favor, but it wasn’t an immediate cause for celebration.

Each year she and her attorney must meet with the town counsel to request

approval for educational payment, depending on his progress, which has

improved steadily thus far.

Yet another ruinous expense is the actual treatments Steven must undergo

to improve his current state of being. The question is not what Julia has done so

far, but what she hasn’t done.

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Part 5: Not quite what the doctor ordered

Upon the notion that something was wrong, Steven was sent to “Birth to

3,” at the age of two, which Julia described as, “A service for children with

developmental delays.”

He was also referred to a pediatric developmental specialist, Dr. Milanese,

who determined that Steven had “Sensory Integration Autism.” Dr. Powers

affirmed the diagnosis by conducting a series of IQ tests when Steven was three.

Steven was then enrolled in a program for children with special needs, “Circle of

Friends” at Johnson School in Bethel. They attempted to teach Steven sign

language, unfortunately, he was only able to learn a few gestures, such as the one

for “more.” From that point, he had ongoing occupational and physical therapy.

When Steven was six years old, Julia brought him to a facility in

Mahopac, New York, called “Valley Health.” There he received sensory

treatment for a 40- day duration which consisted of him lying on a bed which

elevated and declined while a series of lights flickered in a specific color

sequence in order to stimulate the portion of the brain which is not functioning at

the usual level. This treatment totaled to $2,800 and was followed by hyperbaric

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oxygen therapy six months later. He was placed in an oblong tube with a specified

flow of oxygen, for 40 days as well, a treatment adding up to $6,500. Both

treatments where intended to “snap him out of it,” so to speak, but were

unsuccessful.

At the age of seven, Steven was given phosphatidylcholine, or “pk

flushes,” which are injections of fluids once a day for 40 days intended to cleanse

the blood stream of mercury, which was thought to be one of the causes-- in

addition to genetic disposition. It costs $200 per injection, resulting in a total of

$8,000.

As the bills kept piling up, Julia became more and more desperate. Her

and her husband decided to refinance the house to settle their debt. She expressed

her feeling on the matter, declaring, “Was it worth it? Yes! Because Steven was

dead. He woke up and was able to use his senses more than ever before.”

Although he was not completely cured, he had made progress by being

more coordinated with his hands and feet, communicating with pictorial word

association, and maintaining eye contact and focus, which enhanced the families’

hope.

All the while, Steven was coping with severe chronic ear infections. At

ages: two, three, four and-a-half, and five, he had tubes placed in his ears (each

time they were inserted, he would grow out of them, thereby requiring

replacements). At the age of five his ears were flushed so that the fluid would

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flow better, decreasing the amount of ear infections he would get—or so they

predicted

Part 6: What’s your sign?

Although autism is vastly raging across the globe, there is no specified test

to diagnosis it. When it comes down to the sheer root of the matter, catching

autism in early stages relies on one’s own intuition and ability to select a

physician who earns their six-digit salary.

Some visible traits have been classified as

indications of the disorder, however, they can

often be confused with mental retardation;

accurate diagnosis then becomes a matter of

clinical and parental precision in observation.

Though such behaviors are not definite traces of

autism, they assist in narrowing down other

possible disorders.

“Autism is a complex and heterogeneous

disorder that should not be reduced to a single

underlying cognitive impairment” (Tager-

Flusberg, The Development of Autism).

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Due to autism’s prevalence, physicians now display posters illustrating warning signs.

Part 7: A Cause for Concern

“It’s a dull month that goes by without a new cause for autism” (Rutter,

Address to the Second Annual International Meeting for Autism Research, 2002).

The grim truth stares humanity in the face every waking moment, our eyes

digesting each new discovery to something that remains unknown. The cause of

the disorder has been attributed a number of possibilities, including: faulty social

environment, biological influences (genetic, neurology, prevalence in males), the

MMR vaccine, and mercury; yet, none have proven to be the underlying

contributors to the massive “epidemic.”

The empty conclusion has set a restless overlay on future generations, as

the numbers grow, and the etiology becomes less apparent. Even more

disconcerting is the following notion:

Knowing the cause of a disorder does not necessarily mean that such

knowledge will inform treatments. […] The reality is that we are still

awaiting the contribution of etiological information that will allow is to

detect prenatally, prevent, alter, or treat the course of autism. However,

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there is little reason to doubt these contributions will be forthcoming

(Schreibman, p. 107, 108).

Part 8: The Medicine Cabinet

Curtailed by narcotic-induced sessions, Steven’s days seem meshed into a

somewhat controlled emotional state. Aside from the sleep-aid and ADHD

medication, Steven must also take three anti-psychotic medications, seroquel,

lamictal, and lexapro, all of which are mood stabilizers for his violent behavior.

Lamictal is an anti-seizure medication to treat his absence seizures, otherwise

known as, “petit mal seizures,” for which he was just recently diagnosed in

February of 2008 on a visit to the sleep clinic at Yale New Haven Hospital. These

seizures occur primarily in children rather than adults and are triggered by an

anomalous electrical discharge in the brain.

Usually, a petit mal seizure involves only a brief, sudden lapse of

conscious activity. Each seizure lasts only seconds or minutes, but

hundreds may occur each day. During a petit mal seizure, small jerks

sometimes occur involving the facial muscles or hands. A person who

experiences a petit mal seizure can usually resume normal activities

immediately after the seizure ends (HEALTH/LIBRARY, cnn.com).

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The seizures tend to be the result of: metabolic disturbances, previous

brain trauma, birth defects or family history, and can elicit behaviors such as: lip

smacking, fluttering eyelids, gnawing and hand movements.

At the hospital, specialists were able to assess how often his seizures

occurred, which are approximately every half hour. Although the seizures are

mild, Steven becomes disoriented when returning to his usual disposition. This

transitive state causes him to rupture into hysterics, due to the overwhelming

sensations, and are uncontrollable by a single adult.

Julia took Steven back to his psychiatrist later in February, explaining the

behaviors after his seizures. She was informed that autistic children experience an

“aura” following these episodes, which his psychiatrist described as being a,

“white shadowy figure with a glow of light around it.” Since the child cannot

comprehend this reaction, he or she becomes panic-stricken and begins to cry

uncontrollably. Steven’s psychiatrist suggested trying an Alzheimer medication

that has been known to work well with autistic children, though it is not yet FDA

approved. This medication, donepezil, has shown success in behavior and

memory among autistic individuals who include it in their daily regimen. It was

originally discovered by neurologist Michael Chez, M.D. and coworkers, at the

Rush Medical School in Lake Buff, Ill., where it was used in a study that took

place in 1999. Autistic children were administered the drug and showed an

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improvement in speech, so they continued research in 2000 with a placebo-

controlled study on 51 autistic subjects who all had speech disabilities. Those who

received the donepezil improved significantly and child neurologist Steve Roach,

M.D, at the University of Texas Southwestern Medical Center in Dallas called the

study, “encouraging and intriguing.” According to Psychiatric News, he also

indicated,

Donepezil is a symptomatic treatment. That is, the drug does not reverse

the damage caused by the disease process or halt the patient’s

deterioration; instead, it improves the patient’s functioning for a time

(Treichel, Alzeimer’s Drug Shows Promise As Treatment for Autism).

As more research is conducted, Steven’s psychiatrist emphasizes the potential this

could offer him. Julia is keeping the option available, in addition to any other

discoveries that prove beneficial along the way. As she battles through halls of

obscure possibilities, she leaves no door unopened.

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Part 9: When do the rights outweigh the wrongs?

“Legal representative,” is a label often associated with characteristics of

being a merciless, insatiable leech, but at times the stigma proves to be just the

opposite, and those who we are taught to trust, become the enemy.

Julia’s attorney has aided her in previous legal matters, ultimately

revealing to her flaws in “the system” that is meant to safeguard citizens of all

medleys; instead, they (our so-called guardians of constitutional rights) ravage

the weak to a point beyond salvation.

The Individuals with Disabilities Act (IDEA) advocates for early

intervention or special education services for people compatible with the state

eligibility requirements that define “disability.” Autism has been classified as a

disability within the IDEA, deeming those with the condition worthy to receive

aid from the state—so long as their case is severe enough.

The federal government, the legislature, and Governor Rell, have become

particular adversaries who Julia has targeted with disdain. She claims Rell is not

donating money to the organizations that provide mentors and other assistance to

children with special needs. She persisted,

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“The town [Bethel] is not the real enemy; it’s all about the money in

special education. The ones suffering most are the kids, and as a result, parents

suffer too. It’s a chain reaction, and we have to fight back.”

Since the age of 5, Steven has cost Julia $72,000 for treatments and

services that have not been covered under medical insurance. However, certain

authority figures are not the only people she meets with abrasive discord. Society

as a whole is resistant to the acceptance of autism as serious issue. Although there

are organizations encouraging autism awareness and support, such as Autism

Speaks and the Autism Society of America, Julia still meets her fair share of …

One recent episode occurred at Planet Play, a children recreational center in New

Milford, where Steven releases his excess energy on a regular basis. A couple

observing on the outskirts of vast plastic tubes and cushioned pens noticed

Steven’s hyperactive nature around their two toddlers playing in the same area,

who happened to be under the age limit. As Steven nearly collided with them,

Julia stepped in, hindering his rapid movement. The toddlers’ father immediately

rushed toward her, scolding Julia in her child’s total lack of consideration of

others. She countered with an explanation of Steven’s condition, and was belted

the following perspective, “He shouldn’t be allowed in public places.”

Unfortunately, this wasn’t the first time Julia observed ignorant

commentary on her son’s behavior, and it won’t be the last.

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“No matter who I go up against, whether it be doctors, town officials

schools, anyone—it’s a never-ending battle. There’s no happy medium, and

unfortunately, it goes from one extreme to the other.”

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Part 10: At (your name here) service

The yellow bus comes to a halt, the engine still roaring as Steven’s belt is

released. He’s guided down the aisle, then the steps, toward a white-paneled

edifice in the distance. It’s approximately 8:30 a.m., and it’s time to work.

The Foundation School has been Steven’s retreat from reality six hours a

day, five days a week, since September of 2006. A total of 88 children are tutored

at this institution, and Steven’s case is the most severe.

This facility has helped Steven tremendously, in his interaction with

people as well as his surroundings. At sporadic moments, Stephen can slightly

communicate, but only in single words. The only element that the school has not

been able to help Steven improve is his intense behavior. There are times it takes

up to four teachers to get Steven onto the bus during his ramped fits, usually

brought about by emotional frustration or his seizures.

During the summer of 2007, instructors incessantly suggested that Julia

enroll him in a 24-hour camp to observe the effects of constant supervision

around the clock. Although she was hesitant at first, she eventually succumbed,

and Steven’s stay produced incredible results. Over the course of just one week,

Steven learned how to follow instructions, put his clothes on properly, and was

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able to saying more words than ever before. His camp counselor, Coleen was

senior at Yale, and told Julia that he was such a pleasure to work with.

The Foundation School sends quarterly reports of Steven’s progress

during the year. His latest report, completed on April 4, 2008, demonstrated

specific improvements as a result of the services being offered to him, such as his

comprehension of the Picture Exchange Communication System (PECS). This is

a book with cut-out images to indicate wants, needs, and other expressions, and is

utilized for individuals with various cognitive and speech impediments.

Essentially, the specialist will place the images on a Velcro strip within the book

to create a sentence, whereby the disabled individual should translate the images

to speech, as in the image below.

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Tim uses PECS often, in environments where Steven feels comfortable to elicit verbal communication with him.

An example of a PECS booklet

Currently, Steven is working with the constructions, “I want” and “I see,”

along with various nouns and adjectives also showing relation to actual

circumstances, making requests such as, “I want red marker” while coloring.

Steven’s vocabulary has thus increased. He is able to distinguish objects properly

unless they somehow relate to other icons (for example, confusing “bus” and

“truck”), and must be prompted to use three symbols when indicating a phrase

involving color. As indicated in the report,

“Steven’s speech and language sessions have continued to focus on

improving functional communication, increasing vocal intensity. Steven is

demonstrating steady progress in all areas.”

Steven is also working on phonetics in vowel-consonant (VC) and

consonant-vowel-consonant (CVC) combinations and matching “Dolch words” in

books, which are: “220 frequently used 'service words' (primarily pronouns,

adjectives, adverbs, prepositions, conjunctions and verbs), and a further 95

common nouns” (www.dolch-words.com). In addition, he is learning to answer

yes/no, who, what, where, when, and why questions through verbal prompting,

distinguishing coins of currency, and writing out words or drawing objects

indicated by his teachers. His learning expands outside the classroom with

occupational therapy services, which teach him basic skills like shoe-tying, and

physical activities like bowling, kickball and wiffle ball to influence team

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Olivia joins Steven while he paints.

interaction and corresponding motor skills. Through the series of activities Steven

has participated in a major talent has emerged, and people are beginning to take

notice; this gift—his ability to paint.

Steven’s version of a security blanket since

the age of four was a magna doodle. He carried it

everywhere, sketching repeated images of numbers,

letters, shapes, or familiar scenes (for an extended

period of time, Blue’s Clues was his source of

inspiration). His creations were miraculous, but with

each swipe of the horizontal knob, they were erased,

no longer to be admired and shared with family and

friends. In spite of some unfortunate incidents prior,

involving: Steven, crayons and white walls, Julia

decided her refrigerator was too bare, and it was time

for Steven’s art to adorn it. She let him choose his

own tools, and while he enjoyed scribbling with

crayons, his talent exhibited itself most in his

paintings. It had a way of soothing him from the

moment he touched a brush to paper, and has the

same effect on him still, while also being an activity

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Steven works primarily with watercolors.

that him and Olivia can enjoy together. Currently, his art is being assembled for

possible exhibition.

Though attending the Foundation School has produced promising results,

Julia soon came to realize Steven needed to expand his knowledge off the

school’s clock. Approximately eight months ago, Tim Riddle, a mentor with the

Department of Developmental Services (DDS), began working with Steven at

home, mimicking most of the same exercises conducted at the school. This

organization assists individuals on a broad spectrum, with the following objective:

“The Department of Developmental Services’ mission is to join with

others to create the conditions under which all the people we serve experience:

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Three samples of Steven’s latest work. Abstract in nature, his paintings possess intriguing color combinations with letters and numbers displayed in the midst.

Presence and participation in Connecticut town life

Opportunities to develop and exercise competence

Good relationships with family members and friends

Respect and dignity (www.ct.gov/dds/).

Tim carefully makes the distinction between his role as a mentor and that

of a specialist. He believes his responsibilities involve modeling appropriate

behaviors, introducing and engaging Steven in a variety of activities, and

exposing Steven to the world around him. Although he is not a certified special

education teacher, he serves as an assistant and is studying to become licensed. In

addition to the PECS system, Tim also utilizes flash cards to increase his

inventory of sight words. Coloring books and handwriting are implemented to

work on Steven’s precision of coloring within the lines to maintain control of

objects in his hands. Tim specifically gives him miniature pencils to have more

precision, slowly getting him accustomed to writing at a more advanced level.

Julia has taken notice of the extreme changes in Steven’s comprehension.

His eye contact and attention to instructions have increased, now at a mental

capacity of a three-and-a-half year-old. He vocalizes more, labeling objects and

people he sees without any prompts, and is more receptive to people he

recognizes.

32

However, Julia says there is a tremendous difference between what Steven

is learning and his behaviors. While his learning abilities have improved, his

behaviors have become more severe, and while she tries to tame it with

medication and therapy, his tendencies seem to take over. The major cause is his

frustration from not being able to thoroughly express himself. He mostly lashes

out on his parents while trying to communicate when something is bothering him,

sometimes even resorting to biting. Although they’ve learned to suppress this

behavior, it remains uneasy to swallow.

33

Aerial photo of the Glenholme School and surrounding treatment facilities.

Part 11: Fate is a matter of finance

During the week of April 21st, Julia underwent another hearing—without

an attorney. She met with the DDS psychiatrist, and the commissioner of special

education, and brought with her an updated analysis report and Steven. The

outcome was in her favor. The panel advised her that they would accept Steven

into the system in order to be eligible for services that the state can provide. After

meeting him face-to-face, they informed her that there was no need to proceed to

a second hearing. Steven was placed on a mild area of the spectrum for now,

however, by the time he’s 16, they will need to reevaluate the services he will

need.

Julia spoke with the panel regarding outplacement in a residential school,

The Glenholme School, in Washington, CT.

34

Part of the Devereux treatment centers, The Glenholme School is a boarding

school for children with special needs. The campus spans over 100 acres and

accommodates children ranging from ages 10 to 18. As indicated on the official

website:

It provides a value-based program to show students the way to academic

success. The student who is not doing well in the traditional public or

private school can find success in a boarding school like Glenholme. Self-

contained and departmentalized classes, small group and individualized

instruction, emphasis on living and social skills, and a value-based

community guide children on a path of personal accomplishment and

growth (http://www.theglenholmeschool.org/).

They provide academic and social assistance to individuals with learning

disorders such as: Asperger's Syndrome, Pervasive Developmental Disorders,

Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, Bipolar

Disorder, Depression, Obsessive Compulsive Disorder, Tourette’s Syndrome, and

others. Their services span from academics to: “sports, fine arts, an emphasis on

community service as well as a complete residential treatment program, day

treatment, extended day, and outpatient services”

(http://www.theglenholmeschool.org/).

35

The state will also assist Julia with more residential respite hours and

overnight stays until Steven is able to attend Glenholme. At this juncture, the only

thing Julia is waiting on is a signed document with Steven’s “approved” rights.

36

Part 12: The cup half …

Julia has undergone counseling for coping skills to deal with the mentally

draining stress, and questioned why parents complain about their children so

much. She stated,

“ I think about parents who complain about problems with normal children

and think ‘You don’t know what it’s like…’ they don’t know how good they have

it.”

Although things seem to be looking up, Julia can’t help but feel caught in

a web of desperation, wondering if her prayers will somehow become the crux of

her life.

Julia stared down into her warm mug of caffeinated sorrow, twirling the

steel utensil of possibility in her chaotic world, and uttered,

“Will it ever end?”

37

Work Cited

Autism Society of America. 2008 <http://www.autism-society.org/>.

Autism Speaks Inc. 2008 <http://www.autismspeaks.org/>.

Centers for Disease Control and Prevention. Autism Spectrum Disorders Fact

Sheet. May 15, 2007 <http://www.cdc.gov/ncbddd/autism/actearly/autism.html>

<http://www.cdc.gov/ncbddd/autism/actearly/autism.html.>

CNN. June 21, 2005 <http://www.cnn.com/HEALTH/library/DS/00216.html>.

Devereux. 2008 <http://www.devereux.org/site/PageServer?pagename=centers>.

McGarry, Julia. Personal interview. April 2008.

American Psychiatric Association. “Alzheimer’s Drug Shows Promise As

Treatment for Autism. Psychiatric News 36 (November 16, 2001): 16.

Riddle, Tim. Personal interview. April 2008.

Schreibman, Laura Ellen. The Science and Fiction of Autism.

Massachusetts:Harvard University Press, 2005.

The Department of Developmental Services. Mission Statement. 2007

<http://www.ct.gov/dds/.>

The Glenholme School. 2008. <http://www.theglenholmeschool.org/home.htm>.

Time. Autistic Kids: The Sibling Problem. December 24, 2007

<http://www.time.com/time/health/article/0,8599,1698128,00.html>.

What are Dolch Words? Ed. Nick Ramsay <http://www.dolch-words.com/>.

38

Photo Credits

Learning Discoveries Psychological Services. 2007

<http://www.learningdiscoveries.com.au/Autism.htm>.

Seattle P.I. Autism’s effects on the brain.1999.

<seattlepi.nwsource.com/autism/info15.shtml>

What is P.E.C.S.? 2006 <http://specialedandme.wordpress.com/>.

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