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Raising Justin
For the parents of an autistic
child, coping is an ever-changing
challenge.
by Irene Sege, Boston
Globe, 5/1/2003
For
more articles like this visit
http://www.bridges4kids.org
The imaginary play that comes so
effortlessly to Faith is anything but
instinctive to Justin, who was
diagnosed with autism when he was 3
and had not yet begun to talk. The
stimulation he seeks helps him cope
with a chaotic world of sights,
sounds, tastes, and smells that his
brain cannot easily separate into
foreground and background information.
With anecdotal evidence suggesting
that there are growing numbers of
children like Justin in Massachusetts,
the state has launched a study to
document the incidence of autism.
California recently found a threefold
increase in the number of cases there
between 1987 and 1998. "I suspect
we'll find the same thing that's been
discovered in California," says Dr.
David Urion, a neurologist at
Children's Hospital.
Autism spectrum disorders are not
apparent at birth and not detectable
through simple blood tests, which
makes prevalence difficult to
pinpoint, Urion says. Recent estimates
of autism's occurrence range from once
in every 125 people to once in 5,000.
Despite the conviction of many parents
that the disability is linked to
vaccinations, most scientists believe
its origins are genetic. Autism costs
school systems about $50,000 a year
for each child sent to a private day
program and $100,000 for each child
placed in a residential one. This
year, Massachusetts began funding 26
autism specialists to help communities
educate as many of those children as
possible within public schools.
For Allison and Michael Daigle,
raising Justin is a painstaking
process. Every new experience entails
preparing him first with pictures and
a written schedule. Teaching him to
brush his teeth took two years of
gently touching his sensitive mouth
until he could tolerate 10 strokes of
a toothbrush. "You think, `Good job,'
" Allison says, "but you do get worn
down, and you do think, `My God, how
can this possibly be?' "
This winter the Daigles faced a more
harrowing challenge that left them
feeling they had been naive to think
that patience and persistence would be
enough to ensure steady improvement.
Suddenly, after 18 months of progress
in everything from Justin's speech to
his ability to be included -- with the
help of an aide -- in a regular
kindergarten to his capacity to
navigate life without tantrums, Justin
woke screaming most mornings and
remained agitated through the day. He
sometimes hit himself in the head. For
10 weeks the Daigles didn't know if
the change was permanent or only a
phase.
Justin slowly improved after
Presidents' Day, and by April he was
back to his regular schedule, but not
before his parents, teachers, and
therapists had tried a smorgasbord of
strategies. Justin's smile returned,
but not before his mother relived the
anguish of "losing" her son that she
experienced when he was diagnosed.
"Every day I grieve," she says during
the crisis. "When he was younger and
he had periods like this, he hadn't
proven he had any kind of functioning.
Now we've gone through 18 months of
consistent progress. Learning to read.
Learning to write. Inclusion. Is this
neurological activity? Or is it that
this is what autism looks like?"
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