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The Oregonian
Claudia Hutchison: Understanding
prenatal alcohol exposure
06/09/03
In the Oregonian's recent news piece
announcing a tragic death, I was heartened to see a disability
named and explained. ("Homicide victim was childlike -
fetal alcohol syndrome left Jessica Kate Williams with a 12-year-old's
mind," May 26). I laud your publication, and the bereaved
parents, for this piece of education. It is time to bring this
condition "out of the closet," to move past blaming
and toward comprehensive public understanding and policy.
Successful education offers both
preventative and intervention components. Warnings on wine
bottles is a step in the right direction, yet the CDC reports
binge and frequent drinking among pregnant women have not declined
despite 20 years of such warnings. Education is also needed
to increase understanding of the brain damage prenatal alcohol
exposure causes, so that learning environments can be designed
to improve life quality for affected persons.
The Northwest is home to leaders
in FAS research and education. Here in Oregon, social work
pioneer Diane Malbin has founded FASCETS, Inc. (Fetal Alcohol
Syndrome Consultation, Education, and Training ) to assist
families affected by this disability and to educate professionals.
Malbin has coined the term, "Trying differently, rather
than harder," her mantra in guiding parents and teachers
to think of the child as one who cannot rather than will not
. As Dr. Sterling Clarren (Children's Hospital, Seattle) explains,
when we do not understand the syndrome we set expectations
that are the equivalent of demanding blind children to read
the blackboard.
We are rapidly developing the knowledge
to help children with FAS to reach their full potential. Those
who receive early interventions can lead responsible, productive
lives. A young woman I know with this diagnosis recently received
a college degree in psychology. The literature on FAS is replete
with other success stories. But too often the stories of these
youngsters do not end happily, as Jessica's family knows. Some
disabilities, such as Down Syndrome, are marked by clearly
identifiable physical characteristics, which offer a modicum
of protection - they announce that this person is different,
slower, and elicit patience and accommodation. But the facial
features of FAS often dissipate in later childhood. Persons
with the less physically distinguished, but equally neurologically
damaging, Fetal Alcohol Effects are at even greater risk, lacking
the signs that alert others to the disability. All prenatally
exposed children, especially those without telltale facial
dysmorphology, are at risk for developing the syndrome's secondary
characteristics - the depression, despair, and volatility that
result when one tries one's hardest but is repeatedly labeled "lazy" or "defiant." Without
early diagnosis and accommodations, these youth are extremely
prone to isolation, homelessness, incarceration, addictions,
and suicide.
Our human services and educational
systems must adapt to meet the needs of persons afflicted with
this condition. FAS does not appear in the DSM-IV, thus limiting
affordable counseling services. Nor does a Fetal Alcohol Effect
diagnosis qualify a child to receive an Individualized Education
Plan. Because IQ range for this population is 20 - 130, many
children with FAS score too high to qualify for the services
they so urgently need.
Parents, be they adoptive, foster,
or birth family, cannot successfully raise prenatally alcohol
exposed children alone. The Williams did everything possible
to surround their adopted daughter with a supportive safety
net. But it takes a full community of dedicated advocates to
protect these vulnerable citizens from pressures they are not
capable of understanding or resisting.
(Claudia Hutchison, program manager
of the Portland-based Oregon PostAdoption Resource Center,
may be reached by e-mail at chutchison@nwresource.org.)
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