This article was published
on Saturday, October 7, 2006 9:59 PM CDT in News
By Bettina
Editor's Note -- Morning News reporter Bettina
Lehovec spent eight months getting to know Amy
Burris and her son, Steven. She met with them
in their home, attended therapy sessions, watched
at school and talked with people who know Steven.
The result is the story of one mother's struggle
to come to terms with the future as her autistic
child grows.
The story concludes Monday in The Morning News.
FAYETTEVILLE -- Amy Burris sits across the desk
from the executive director of the King's Daughters'
School Center for Autism in Columbia, Tenn., trying
to make sense of the words.
"We don't do fund-raisers here," the
woman says with distaste, as if Amy had suggested
nude bowling or a wet T-shirt contest. "We
accept two sources of income at most."
"Oh, I'll take care of the fund-raising,"
Amy protests, but the gray-haired matron cuts
her off.
"Miss Burris, let me try to explain this
to you." The carefully modulated tones of
culture shape her voice. Her manicured hands sport
an array of gemstones. She wears tailored slacks,
a long-sleeved Oxford blouse and a royal purple
sweater tied at her breast.
Amy wears a knee-length flowered skirt, a sleeveless
blue shirt and sparkly sandals from Old Navy.
Her long brown hair is twisted into a bun. She
had looked at herself approvingly in the motel
room mirror that morning.
"Don't I look motherly?" she had thought
with pride.
Now the administrator is stripping that pride
away.
"The parents here at the King's Daughters'
School Center for Autism, well, they're very committed
parents who prepared financially to have children,
Miss Burris. They're architects, whose wives are
physicians." She tightens the purple sweater
with each phrase. "They're certainly not
students."
Amy is a graduate student at the University of
Arkansas. She's spent her rent money to get to
Columbia, with the fevered hope of enrolling her
autistic son for even a few months.
"A child with autism has ongoing needs,"
the executive director explains later. "Some
of our children are here for years. A few months'
work does not necessarily make a difference."
Charlotte Battles is being truthful, but the
words cut Amy's heart like a knife. She tries
to align them with the reality of her life --
married at 19, pregnant at 20, a stay-at-home
mom thrown into the world of autism advocacy at
24.
The questions come. How do you prepare for an
autistic child? How do you deal with the fear
that clutches your heart like a fist when you
begin to realize something is wrong? How do you
accept the chilling diagnosis, the realization
that your child has just become a statistic, one
of 1.5 million children in the United States with
the disorder? How do you plan to parent a child
with a complex developmental disability that impacts
every area of his life, particularly communication
and social interaction?
How do you cope?
Now 34 -- her beloved Steven now 13 -- Amy is
reaching out to the private school for help. She's
done everything she can on her own. She's worked
with Steven for 10 years, ferreting out the latest
training techniques. She's pursued each new lead
ferociously, confident that this time she'll set
Steven free. She's sent him to a series of public
schools, fighting to get his needs met in each
one.
But adolescence has hit and Steven is still severely
autistic. He masturbates three times a day, with
none of the social restraints other boys his age
understand. Amy's 11-year-old daughter has witnessed
the inappropriate behavior. She resents her big
brother for the havoc he wreaks in their lives.
Amy worries that she's had to grow up too fast.
Amy's marriage ended because of stress over Steven,
and a subsequent romance ended the same way.
Amy's always sworn she'll never put Steven in
an institution, but she's begun to wonder if she
can care for him herself. At 5-foot-8 and 140
pounds, Steven is a big boy. He's strong as a
linebacker and fast as a hare. His disposition
is sweet, his energy level high. He's pacing or
moving or into something every waking hour.
Doctors say he has the cognitive level of a 2
1/2-year-old. Like a toddler, he needs 24-hour
supervision. Unlike a toddler, chances are he
always will.
Hope For the Future
Amy's interview at the prestigious King's Daughters'
School in June had started well enough. The trip
from Fayetteville had been rife with signs --
portents of an auspicious beginning.
There was the rainbow that lit the sky near her
parents' home in Greenwood, south of Fort Smith,
where she'd left the children for a few days.
There was the 18-wheeler she and friend Andrea
Hanson got stuck behind in traffic -- "Stevens
Transport" emblazoned on its back. There
were the $2 lottery tickets she and Andrea, a
speech pathologist in Bentonville, kept winning
as they drove through Tennessee. They racked up
$38 in winnings by the end of the day, enough
for dinner and a drink at an Applebee's in Columbia.
There was the name of the motel they stayed in
-- the Jamison, Amy's maiden name.
The women ended their day at a roadside carnival,
riding a Tilt-A-Whirl in the rain. Soaked to the
skin, hair plastered against their faces, they
screamed with laughter. Their exuberance touched
the sky. They seemed near the end of a difficult
journey -- a journey that had begun months before
as Amy came to the heart-wrenching decision to
seek outside help for her son.
The special education programs in public schools
had seemed adequate during Steven's primary years.
Once he entered middle school, that changed. Amy
felt that the public education system had given
up on her son, relegating him to day care rather
than trying to teach him new skills.
Debra Wilson, director of special services for
the Fayetteville School District, disagrees. Wilson
can't comment on any particular child, but she
shared general observations.
All children are expected to make academic headway
under the No Child Left Behind Act of 2001, Wilson
said. The educational goals for an autistic child
might include increasing communication, behavior
intervention and social skills-building. Functional
activities such as doing laundry -- the type of
activity Amy sees as rote -- teach needed living
skills while increasing communication and compliance
with an authority figure.
Steven attended Fayetteville schools from 2003
to 2005. A move placed the family in the Springdale
School District last fall.
The specialists who had originally diagnosed
Steven's autism had foretold eventual institutionalization.
The boy is so severely affected, he'll never be
able to function in society, they had said. Yet
Amy sees the situation differently. She sees the
human being in her son.
She's not ready to give up on the hopes and dreams
that have sustained her for 13 long years. With
the right training, Steven will blossom, she believes.
He'll learn the skills he needs to navigate the
world around him. He might never be completely
self-sufficient, but he'll have a life -- something
beyond being locked in a padded room in an institution.
That's the grim scenario Amy carries in her mind
about life in one of Arkansas' public institutions,
although she's never visited one.
A creative writing teacher years ago had warned
Amy of such institutions, in which he had worked,
and begged her never to let Steven enter one.
But her alternatives are dwindling.
"Puberty's hitting hard. I don't know what
to do all the time anymore," she'd confessed
to a friend last spring. "I don't want Steven
not to live with me. It breaks my heart to think
about it. (But) public schools can't serve him.
He needs (specialized) education, training. I
know it will make a difference. I don't know to
what degree. That's what I want to find out. I
just have to know if Steven has a chance."
A private school will give him the concentrated
attention he needs to improve, she believes.
'My Dream, Dream School'
Amy had visited the Heart Springs School in Wichita,
Kan., last winter, encouraged by the school's
expertise in autistic education. Yet the price
tag -- $21,000 a month for a child with Steven's
extreme needs -- had stopped her in her tracks.
A legal procedure called a due process hearing
can force a public school district to pick up
some of that cost. If the district isn't providing
the special education mandated under the Individuals
with Disabilities Education Improvement Act of
2004, it can be held responsible for providing
those services at a private school.
Yet proving that a school district isn't meeting
a student's needs is an arduous process. Wayne
Foster, a special education supervisor for the
Springdale School District, put it this way: "We
are required to provide a free, appropriate public
education for a student with disabilities. We
are not required to provide a Cadillac version
of (those services)."
An Individualized Educational Program plan --
IEP for short -- spells out the goals for each
student. Every IEP is different, tailored to meet
individual strengths and weaknesses.
The plan is revised annually by a team that includes
the parent or guardian, special ed teacher, regular
classroom teacher (if that applies), special service
providers such as speech or occupational therapists,
a building administrator and a special ed supervisor
such as Foster.
Foster is proud of the services his school district
offers. Ongoing training for teachers strives
to keep them up-to-date. A public school district
spends more than $15,000 on a child with severe
disabilities, he said. About 10 percent of students
in the school district receive special education
services of some kind.
Private schools for autism don't exist in Arkansas.
Amy believes it's unethical to play the due process
hearing card. She doesn't want to ask the school
district to spend many thousands of extra dollars
on just one child. So she's hatched the idea of
raising Steven's tuition herself, cobbling together
the $9,000 monthly fee at the King's Daughters'
School from fund-raisers, donations and her own
modest income.
She can't contribute much. A graduate student
in the University of Arkansas speech language
pathology program, she relies on student loans,
child support and Steven's disability payments
to finance her family's needs. In the evenings,
she teaches piano and clarinet lessons in her
home to supplement her income. The Medicaid waiver
program pays for child care and some therapy equipment.
The waiver program is a state program that disburses
federal funds to help disabled individuals receive
special services in the community. It costs far
less to support a person through the waiver program
than to pay for institutionalization. Keith Vire,
executive director of the Arkansas Support Network,
says a low estimate for institutional care is
$85,000 a year. Waiver payments vary, since each
is based on an individual contract, but the maximum
amount allotted is $58,400 a year.
Steven is one of 3,000 Arkansans who receive
the waiver. There are more than 1,000 on a waiting
list. The waiver cannot be used to finance private
education such as the King's Daughters' School.
Amy arrives at the school with $30,000 in the
bank. The money is a gift from a relative who
has asked to remain anonymous. Amy hopes to use
the money for a down payment or to cover tuition
for several months.
"Silly me, I thought that was a significant
amount of money," she says later. She has
very little in reserve. But she has faith. Her
ex-husband's wife has pledged her Avon sales profit
to help with tuition. A friend at the Fort Smith
Art Center, where Amy used to volunteer, is planning
a fund-raising concert in the fall.
The rest will come, Amy is sure. Her belief in
Steven is so strong, her hope for him so huge,
that she's certain the rest of the world will
respond.
"I fell in love with him the first time
I felt him kick," she says. "When I
held him in my arms and looked into his eyes,
I knew I would do anything for him."
The director of development at the King's Daughters'
School Center for Autism had greeted Amy and Andrea
cordially. She had shown them around the school,
fanning the flames of Amy's hope for Steven with
every step.
"It was everything I wanted for him,"
Amy says later. "It was my dream, dream school."
Her eyes are bright as she hears about the small
number of students, the high teacher-to-student
ratio and the streamlined learning plans. She
already sees Steven using the visual schedules
posted on the walls and bouncing on the bright-colored
therapy balls.
"Steven would really like this," she
says to Andrea, who is equally impressed.
But the fire dies in the executive director's
office. Battles breaks the bad news bluntly. The
school won't consider Steven without a year's
tuition paid in full.
Amy cries, begging Battles to change her mind.
Battles holds firm. She'd be doing Amy a disfavor
by encouraging her unrealistic dreams, she says
later.
"It's an expensive proposition to have a
child at a boarding school, particularly a child
with severe behaviors and needs," she will
say. "It's almost impossible for working-class
families unless they have some help from a school
district or other entity."
Amy and Andrea leave the school, driving a short
distance before Amy pulls over and bursts into
tears. Andrea takes the wheel. Amy sobs all the
way to Memphis, where the women stay overnight
with a friend.
"I put on a brave face for everybody, but
I have been really petrified about what's coming
up for Steven," she confides. It looks to
her as if her fears will come true.
Coming Monday -- Amy revisits the early years
of Steven's struggle with autism and finds a sense
of acceptance about his future.
What is autism?
Autism is a brain disorder that often interferes
with a person's ability to communicate with and
relate to others. The disorder, which is more
common in boys, covers a wide range of behaviors
and abilities. No two people with autism will
have the same symptoms. Some need round-the-clock
care, while others are able to function at a high
level and can attend school in a regular classroom.
Autism is more common than childhood cancer,
cerebral palsy, hearing loss and vision impairment.
The rate of autism has increased in recent years,
and while there are many theories why, no one
knows for sure. It could be that diagnostic methods,
diagnostic categorization, and improved identification
of individuals with autism account for the increase.
Common problems and behaviors:
Social skills: People with autism might not interact
with others the way most people do, or they might
not be interested in other people at all. People
with autism might not make eye contact and might
just want to be alone. They might have trouble
understanding other people's feelings or talking
about their own feelings. Children with autism
might not like to be held or cuddled, or might
cuddle only when they want to. Some people with
autism might not seem to notice when other people
try to talk to them. Others might be very interested
in people, but not know how to talk, play, or
relate to them.
Speech, language, and communication: About 40
percent of children with autism do not talk at
all. Others have echolalia, which is when they
repeat back something that was said to them. People
with autism might not understand gestures such
as waving goodbye. People with autism might stand
too close to the people they are talking to, or
might stick with one topic of conversation for
too long. Some people with autism can speak well
and know a lot of words, but have a hard time
listening to what other people say.
Repeated behaviors and routines: People with
autism might repeat actions over and over again.
They might have trouble if family routines change.
By the numbers
5.7
Number of people in 1,000 with autism in the
United States.
24,000
Approximate number of children born each year
in the United States who will eventually be diagnosed
with autism.
500,000
Estimated number of people 21 years old and younger
who have autism.
141,022
Approximate number of children served under the
autism classification for special education programs.
Source: Centers for Disease Control and Prevention
Web Watch
Autism Society of America
http://www.autism-society.org/site/PageServer
Center for the Study of Autism
http://www.autism.org/
Centers for Disease Control and Prevention
http://www.cdc.gov/
http://www.nwaonline.net
