Introducing. . .  A Standard of Care
for Toddlers, Children, Adolescents and Adults with FAS/E
Jocie DeVries

A Crisis in America
The epidemic of kids killing kids in the school yards and classrooms of
America may be more understandable than most people think. According to
Michael Dorris, a featured author on ABC's 20/20 program a few years
ago, fetal alcohol syndrome (FAS) leaves many individuals without
remorse, without a conscience and unable to distinguish right from
wrong. For thousands of years, many of these babies died soon after
birth because they often have "failure to thrive" and/or they are
premature. However, with the discovery of penicillin and the invention
of incubators and various other dramatic lifesaving techniques, babies
now born with FAS/E usually survive.

According to the National Association for Families and Addiction
Research and Education, over 750,000 alcohol or other drug exposed
babies are now born every year in the USA. While this is not to say that
all of these children have FAS/E, it is obvious that the addictions of
their mothers were so out of control that when they went to deliver
their babies, they tested positive for alcohol and/or other drugs. It is
quite possible that for many of these children, remorse, conscience and
the ability to distinguish right from wrong has been diminished. Of
course many complex factors converge when a child turns violent and many
of these factors may have nothing to do with fetal alcohol exposure. But
research has shown that individuals with FAS/E are very naive,
vulnerable, volatile and easily drawn into anti-social behavior. Truly,
we have a crisis in America.

Protecting People with Disabilities from an Overload of Stress
One of the most basic and fundamental issues of human rights should be
caring for people in our culture that cannot take care of themselves:
babies, people who are physically or developmentally disabled and those
with serious mental disorders. In some situations we, as a society, have
developed interventions that really are effective but in other areas
serious work is still needed.
The good news is that interventions for individuals with FAS/E have been
known for many years by parents struggling to care for these children.
The problem was that there had been no systematic effort to gather up
this "collective family experience" until November 19-21, 1997 at
Rainbow Lodge in Washington State. Dr. Tim Brown and Mr. Kenneth Stark
(Directors of the Divisions of Developmental Disabilities and Alcohol
and Substance Abuse in the Department of Social and Health Services)
funded an FAS Intervention Retreat for families. It is important to
realize that this event was initiated by families in crisis and these
men responded to those needs.
Most professionals still testify to the fact that no one knows which
strategies will develop into interventions that will work for
individuals with FAS/E. But a strategy is a theory. Interventions are
actions which alter the course of otherwise inevitable events. According
to Dr. Ann Streissguth's Secondary Disability Study at the University of
Washington (1996), the natural course of the disability of FAS/E is
catastrophic to the individual, family and society.

Consequently, as a community we are forced to provide interventions -
either out of compassion for a developmental disability or out of fear
through the criminal justice system. Unless we make a conscious,
compassionate choice, and learn how to protect individuals with FAS/E
from stress that they do not understand and are unable to cope with, we
will end up serving them out of fear as is currently being experienced
across America.

The Difference Between Strategy and Intervention
Accepting the necessity for serving these individuals and understanding
the unique wisdom and experience of the families we've had the privilege
to meet over the past nine years, we decided to hold a family FAS
Intervention Retreat. We sent out invitations to all the parents in
Washington State on our mailing list. The one requirement for attendance
was that they have a medical diagnosis of FAS/E on a child they are
raising or have raised.

We brought as many families together as we could (28 total) from all
over the state who represented children in all four of the developmental
stages. We spent three days brainstorming about all the positive,
successful interventions we've devised for our children. This was not a
strategy session nor was it a time to whine. It was a work session to
share and collect interventions that have already altered the negative
course of FAS/E. We families were focused and determined.

Our emotions were real, so we were able to acknowledge the grief that
will always be a part of our lives. The grief is strong not only because
FAS/E is a life-long disability but also because it is totally
preventable. Our children could have been saved from this birth defect
if society had been educated and committed to the best intervention -
prevention. (See related article, p. 11.)
Because of the intervention data generated at this event and others over
the years, we have the necessary information to develop an FAS/E
"Standard of Care" from the collective family experience. We now
understand:

   * The developmental deficits of toddlers, children, adolescents and
     adults with FAS/E (FAS/E Developmental Overview through the Eyes of
     Parents brochure. Also see p. 4 for Toddler Deficits.)
   * The adolescent behavioral profile that presents itself even when
     the IQ is normal (as described in the We Love Children brochure);
   * This behavioral profile is reflective of the developmental deficits
     and the resulting symptoms should not be treated separately or
     apart from a basic understanding of FAS/E.
   * There is a recognizable pattern of conduct that can be catastrophic
     to families (Survey of Stress and Grief, see p. 5);
   * The proven interventions which can be done within the resources of
     the families (See Family Interventions, pages 6-8);
   * The successful interventions that families have initiated within
     public service delivery systems (Systems Interventions, see pages
     6-8).

We are very grateful for the funding that was made available for this
special gathering. We were also humbled and excited that Dr. Louise
Floyd and Dr. Jacqueline Bertrand from the federal Centers for Disease
Control called to ask us if they could attend the FAS Intervention
Retreat. What a testimony of their interest and respect for the
collective family experience!
This issue of FAS Times is devoted to the foundational introduction of
the FAS/E Standard of Care and the presentation of the specific Standard
of Care for Toddlers with FAS/E. The Fall and perhaps Winter issues will
present the Standard of Care for children (ages 6-11), adolescents (ages
12-19) and adults (ages 20 and over).

Reprinted from FAS Times, Summer 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.)