|
 Out
of Darkness: A Family's Desperate Effort to Save Their Boys From
a Life of Isolation
Primetime Thursday @ ABCNews.com, April 22, 2004
For more articles like this
visit
https://www.bridges4kids.org.
Marc and Sophia
Augier were overjoyed when their dream of a big family quickly
became a reality five years ago with the birth of son Marcel and
little more than a year later, twin boys Christophe and Henri.
Their lives, in the suburbs of Cleveland, seemed to be a normal
and happy blur, as they went about the business of raising three
young boys.
So, Marc and Sophia didn't know what to think when, at age 2,
Marcel suddenly started behaving strangely. The boy who seemed
to be developing normally, who was starting to talk, suddenly
stopped talking, stopped responding to his parents.
At times, he would shake his hands in front of his face. Awake
in the middle of the night, he wouldn't sleep. Sophia says he
was "humming, talking to himself, bouncing off the walls."
Soon Marcel stopped making eye contact. He stopped pointing. He
even seemed oblivious to Christmas presents. On a trip to
Seaworld, "He wasn't even overwhelmed," she said. "He just
floated through the day."
Concerned, they took him to the pediatrician, and then to a
neurologist, where Marcel underwent a battery of intensive
tests. The result was devastating. Marcel was diagnosed with
autism, a complex developmental brain disorder that can leave a
child isolated, completely unable to connect to the outside
world.
The Augiers were stunned and heartsick. Soon, it got even worse.
The odds were astronomical, but the doctor said Christophe and
Henri were autistic too. And Sophia was pregnant with her fourth
child.
It would not be easy to take care of three disabled sons. The
boys couldn't tell their parents when they were hungry, tired or
scared. They would be frustrated by their inability to
communicate, and threw tantrums constantly.
Their children threatened with lives of dependence and
isolation, the Augiers didn't know what to do. But they didn't
give up. They decided to start a desperate journey against
incredible emotional, financial and personal odds to save their
sons.
On the Cutting Edge
It turned out that the Augiers were living near one of world's
leading hospitals, Ohio's Cleveland Clinic — which was starting
an autism center for children.
But the center had no program for toddlers. So the Augiers
cleaned out their basement, and with the center's help, hired
and trained a team of 12 tutors to implement a round-the-clock
intensive therapy called applied behavior analysis, or ABA.
ABA is a form of behavior modification: Children are given one
simple command at a time. For Marcel, it began with "come sit."
The command is repeated to them hour after hour, day after day,
until they do it. Then they are rewarded with praise, or a snack
or a toy, until they can eventually do it on their own.
"It's a constant effort on our part to open their world. Every
day, every hour, every minute," Sophia said.
The hope is to break though to autistic children, training them
to learn and, in theory, rewiring their young brains, said
Leslie Sinclair, who runs the Cleveland Clinic Center for
Autism.
ABA is a widely accepted treatment for young children with
autism, and is used at centers and schools around the country.
But some say ABA is too rigid. It is never easy: a child can
bite, slap and scratch. The therapists can seem unsympathetic.
But Sinclair says the program is effective. "It's really firm
and neutral," she said. "We don't really allow our children not
to respond. And there are certain things we don't want our
children to engage in because it's not productive."
ABA, especially when introduced early, can show results, and is
accepted among many researchers as the most effective treatment
for autism. But ABA doesn't rescue every child.
About 30 percent show real progress, but the Augiers believe the
odds are with them. After a year of home therapy, their boys
were enrolled in the Cleveland Clinic's new toddler center.
‘Sheer Delight’
In June 2001, the Augiers' fourth child was born. To their
relief, she did not show any signs of autism.
And more good news: After several months, the ABA gamble seemed
to be paying off. The Augiers could see real progress for their
sons — not just basic skills, but real connections.
Marcel — who could not speak — could now form full sentences.
Christophe was learning to read. Henri, the most severely
impaired, could finally make eye contact.
The developments were "sheer delight," Sophia said. "When you
see them coming back to you, it fuels the fire to keep going."
The Augiers still use ABA at home, and every moment with the
boys is an opportunity to reinforce what they have learned.
But ABA is expensive. Tuition at the Cleveland Clinic's autism
center is $56,000 per child, about $170,000 a year for all three
Augier boys. Neither insurance nor the government paid for it.
Marc lost his job in the recession, so the Augiers have been
forced to spend their life savings — $500,000 so far. They had
borrowed from friends and family, but say they can't keep going
back.
So, with Marcel nearing kindergarten age, the Augiers faced a
new challenge: They would have to ask their local school
district for help, or face the fear of losing this lifeline to
their children.
A National Debate
By law, public schools have to provide a free and appropriate
education for developmentally disabled kids, and the local
public school does have a program for autistic children.
But it doesn't have to be the intensive year-round ABA that the
Augiers receive for their children. The Augiers are currently
negotiating with the district to try to come up with a suitable
plan for their boys. They met with district officials this week,
and are scheduled to meet again next month.
Attorney Sue Hastings, who represents the Augiers' school
district in Chagrin Falls, Ohio, says she understands how
parents who have seen their children flourish with a certain
program might feel when they are not able to continue with it.
"But school districts are not charged with providing the 'best'
that money can buy," she said. "They don't have the resources to
fix the problem."
The Augiers have become part of a heated national debate. With
autism dramatically on the rise — one in every 166 children is
now diagnosed with autism — the issue of who pays for treatment
and education is increasingly important. There are no national
standards, and funding varies from state to state, district to
district.
An autism diagnosis is already devastating for families,
Sinclair said. "Now they have to go from one place to another
trying to find where can I get the services and how can I get
them funded. And time is ticking away."
Fingers Crossed
ABA experts say that when children start therapy young and get
40 hours a week without interruption, they have the greatest
chance of living normal lives.
Even over a two-week Christmas break, Sophia said, she could see
a regression in her boys.
There is a long waiting list for the Cleveland Clinic's autism
center — and for places like it around the country — so for now,
the Augiers feel lucky to be there. For now, they continue with
ABA therapy at home and at school, and cherish each small
victory. Their best hope for their boys: "full recovery," said
Marc.
There was one piece of good news for the the Augiers recently:
Marc got a job in finance.
back to the top ~
back to Breaking News
~ back to
What's New
|
