A Standard of Care for Children with FAS/E
Jocie DeVries

By the time children with FAS/E reach six years of age and begin
elementary school, hopefully they are included in and bonded with a
loving, healthy family.  Naturally what is best for these children is
for their birth families to start the recovery process and learn to
parent their own children.  However the sad fact is that over 80% of
children with FAS/E who have been seen at the FAS Diagnostic Clinic were
not living with their birth families. Therefore finding stable,
permanent families for children with FAS/E becomes a critical
intervention issue for foster care and adoption agencies. Dr. Ann
Streissguth reported in the 1996 FAS/E Secondary Disability Study at the
University of Washington, that the primary protective factors for the
child with FAS/E were: living in a stable and nurturing home for over
72% of life and being diagnosed with FAS/E before age 6.

Consequently at the FAS Intervention Retreat in November 1997, when we
started brainstorming with families about successful interventions we
began with the assumption that the critical intervention foundation had
been laid, i.e. that we were talking to healthy birth parents who were
able to advocate as caregivers for their children, and to foster,
adoptive, step and grandparents who had devoted their time, energy,
wisdom and intelligence to providing for these children.  We were not
disappointed.  As we finished sharing successful interventions for
toddlers and moved into the discussion of children, ages 6 through 11,
we facilitators were overwhelmed at the dramatic depth of love, patience
and nurture that these parents had given to the children in their care.
The toddler years of FAS/E are usually spent wondering at the
developmental delays and worrying whether or not the child will "catch
up," while the years of childhood begin to declare the depth of the
brain damage.  It is important for parents to understand that this issue
is not unique to FAS/E.  In Washington State, developmental disabilities
are defined as: mental retardation, developmental delays in ages birth
to 6, cerebral palsy, epilepsy, autism or other neurological conditions
similar to mental retardation.  It would seem logical that by the time
children with FAS/E are six years old and the developmental delays are
entrenched and permanent, (while their peers begin to blossom with
physical, mental, and emotional maturation) that they would be shown the
type of dignity and respect given to children with other  disabilities -
recognition and eligibility for services.

The mission of the Division of Developmental Disabilities* is to assist
individuals with disabilities and their families to obtain services and
supports based on individual preferences, capabilities and needs, and
which promote everyday activities and relationships common to most
citizens. Unfortunately, this is not the case for children with FAS/E.
Two things are needed.  First we must have a sound scientific
"definition"  that explains why FAS/E is as serious and catastrophic to
the affected individuals as mental retardation. (See article, p. 9.)

The dream we have for children with FAS/E is that those precious,
magical years before puberty can be as wonderful and carefree for them
as for other children.  The pursuit of happiness ... what a concept. The
place to start?  Again in Ann Streissguth's Secondary Disability Study,
researchers list "being found eligible for services through the Division
of Developmental Disabilities" as another universal protective factor.
If our goal is to provide safety for individuals with FAS/E and the
community, we need to provide appropriate intervention supports during
childhood so they will not present as lacking remorse or a conscience
during the adolescent years. The first interventions for the childhood
years will be official recognition of FAS/E as a developmental
disability and new funding appropriated into the Division of
Developmental Disabilities to care for these children.

Secondly, we need an accepted medical protocol for diagnosing the
organic brain damage which has been called fetal alcohol effects (FAE)
over the past few years.  Everyone understands the general concept of


FAE but it is not a medical diagnosis and consequently does not open the
door to any treatment or services.  The exciting news is that the
evolution of scientific research on this issue has brought us to the
point where doctors may have the tools to accurately diagnose FAS/E in
the foreseeable future without being dependent upon the facial features
as they have in the past. The current work of several researchers could
have the potential for developing new diagnostic protocols or tests. Two
of these researchers will be featured at the FAS*FRI conference in
Everett, Washington on Oct 8-9 1998, Dr. Sterling Clarren (University of
Washington) and Sarah Mattson (San Diego State University). (See p. 11.)
We believe their findings are indicative of  the type of current front
line research that has the potential to develop the necessary diagnostic
tests to validate the existence of organic brain damage in all affected
individuals. This information is essential to policy makers, who need
hard data to authenticate a medical condition and estimate the incidence
and costs, in order to make informed decisions about appropriations for
services.

Diagnosis is also vital to the children and their families. The

developmental delays of the toddler years must be understood and
diagnosable as the children get older in order to provide them with
appropriate care for a developmental disability instead of criticizing
and shunning them as persons who have no conscience and are without
remorse. If Dr. Ann Streissguth is correct in her Secondary Disability
Study and it is important to diagnose the affected individual before age
six, this new research information is a thrilling breakthrough for
FAS/E.

This issue of FAS Times presents the collective family experience from
the FAS Intervention Retreat for the childhood years. The good news is,
there was so much information shared by parents for this age group, it
will take two issues to present the interventions! So the interventions
for children will be continued in the winter issue.  We have had great
feedback on the Summer issue which focused on interventions for
toddlers. One mom called from California and said, "I'm desperate, can
you send me the interventions for the adolescent years now?!"  We
understand her feelings of urgency. We've been there, too. However, we
are compiling the data just as fast as we can.  There is so much we can
do to help individuals with FAS/E - isn't that a great place to be!

Reprinted from FAS Times, Fall 98

(Editor's note: The complete Standard of Care is available by itself or
in our book, The Best of FAS Times.  Please see publications page.)