Finding Strengths and Building Self Esteem
in Children with FAS/E
Jocie DeVries

When my husband and I adopted our kids in 1978, we didn't know they had
developmental disabilities. However, I do remember one odd trait that
really stuck out and I now realize it was our first clue to identifying
FAS/E. About the time Rusty came to live with us I was deeply involved
in reading and studying about family relationships. One book that
someone recommended to me was called, I'm OK; Your OK.  I have no idea
what the intellectual elite and/or academic scholars thought of the
premise in the book but I thought it was kind of interesting. Somehow it
had a practical bent to it which was probably the reason pop-psychology
became so important during those years. And with three adopted children
with hidden disabilities, I needed practical. I had a houseful of four
busy children, plus my husband and I who had totally opposite
personalities and backgrounds. It was a zoo.

Logically speaking, Rusty should have been easy to understand. He came
from a neglectful birth family, passed through 8-10 different foster
placements, suffered severe abuse and clearly had an attachment
disorder. His personality should have been a "textbook case" of
non-existent self-esteem, but somehow he was different. All of the
social workers, therapists, psychologists, psychiatrists and various
medical doctors were very kind and sympathetic but their advice didn't
add up; there was a missing piece. Of course we now know the missing
diagnosis was FAS but there was an early clue that pointed to the
missing diagnosis and I found it in the book, I'm OK; You're OK.

According to what I remember about the premise of the book (and don't
mess my memories up with facts) people's early background/history
determined their basic outlook on life. In the 1970's, personality was
thought to be the result of environment. Considering Rusty's history he
should have had debilitatingly low self esteem. But oddly that wasn't
the case. The therapists claimed to see problems with self esteem but
they didn't see him at home. He was a very cheerful little guy and his
attitude was cooperative and pleasant until something came along and we
would try to teach him personal responsibility. He seemed to think he
was a god or something. In fact, my subconscious mind came up with a
nickname for him, the crown prince. Rusty was my little prince. It
upsets me when I look back and remember these things because we were so
alone when we were trying to figure this all out. I didn't want to
change him, I just wanted to understand who he really was. So instead of
fighting his "natural" perspective of himself and the world, I just
accepted it. His attitude was puzzling of course considering his
background. But as long as he liked himself and had cheerful, healthy,

sharing interactions with his siblings, I didn't care if he thought he
was the crown prince.

Now we know from the collective family experience that his behavior and
attitude is common. Developmentally, persons with FAS/E remain very
immature and always think they are the center of the universe. It's not
that they spend a lot of energy keeping others revolving around them.
They think they already ARE the center of the universe and they deserve
preferential treatment and privilege. They think other people should
follow rules and will be the first to notice when others aren't in
compliance. But something about the disability convinces them that they
are always the exception to the rule. This self/others view normally
occurs in an early stage of development (about the ages of 2-4) but if
it is grossly exaggerated and the child gets perpetually stuck in this
stage, then it can be a big clue to identifying FAS/E. This self/others
view can be described as, "I'm ALWAYS OK; what's your problem?"
Sometimes therapists insist this describes an attachment disorder but
parents learn the difference after the child is medically diagnosed and
they understand the core disability traits of FAS/E.

A second discovery which helped us understand and sort out self esteem
as it related to trauma, abuse, and attachment in Rusty and Cheryl came
again as we stopped depending on the environmental theory of personality
development and began concerted efforts to increase their self respect.
Although it was not until years later that the four temperament theory
of inherent personality traits was scientifically documented,1     I
became fascinated with it in the 1970's because it was so practical. It
worked. The four temperament theory offered anotherreliable way to
understand Rusty's personal perspective and view of the world around him
even without the diagnosis. It became a compass which taught him about
his own strengths and weaknesses. It also gave him a simple way to
understand that his brother and sisters, mom and dad all had strengths
and weaknesses, too. And it gave us all insight into how to laugh and
play fairly together even when having a difference of opinion.

In this issue of FAS Times (our second on FAS/E: A Standard of Care for
Children) we are providing more detailed information and specific tools
which parents have found helpful as they raise their children into
healthy, happy adults. The first tool we want to share is this theory of
the four temperaments. It came to be so important to our family in
helping our disabled children see where they fit and what their
strengths were, that I want to share it with our readers. It was the
ONLY tool I found that helped self-esteem without having an accurate
diagnosis because it grounded them with a true explanation of their own
identity. It wasn't that I increased their self esteem by flattery or
false praise. It helped them become aware of their own deep talents and
recognize the truth within themselves. So I have included illustrations
of a little cartoon parable that I used with my own children, for
parents to use to help their children find their strengths. (See pp.
5-8; these pages may be removed from the newsletter and used as a color
book.)

Another tool that is a more sophisticated companion to the cartoon
parable is one Ann Waller found very helpful with her family. Cynthia
Ulrich Tobias has written a book, The Way They Learn, which describes
several types of learning theories, including the work of Dr. Anthony
Gregorc. We have received permission to excerpt some of the basic
information on four learning styles for parents and professionals to use
as another method to find the strengths of the children under their
care. When we can identify the strengths and natural style of our
children we can more easily set them up for success and build up their
self respect whether or not they have an FAS/E diagnosis. (See pp.
9-11.)

The fascinating thing about the timing of compiling these intervention
tools and the Standard of Care is that things are beginning to happen on
the national level. I was invited to present a formal paper on "FAS/E: A
Standard of Care" to a joint committee of the national Centers for
Disease Control (CDC) and the National Institute of  Alcohol Abuse and
Alcoholism (NIAAA) in early September. This paper will be published in a
monograph along with the other papers which were presented. What an
honor for our collective family experience in raising children with
FAS/E to be recognized in this national forum! Many thanks to Dr. Louise
Floyd at the CDC for this exciting opportunity.

A second very dynamic development is the congressional passage of the
FAS Prevention and Services legislation sponsored by Senator Tom Daschle
(D) from South Dakota. As of this writing, it is on the President's desk
awaiting his signature. This legislation sets up an FAS federal
interagency task force (on which The FAS Family Resource Institute will
be able to represent the FAS collective family experience and advocacy).
This task force will help facilitate FAS/E prevention and intervention
efforts on the national level. Funding is also designated for research,
prevention and intervention projects.

Since we have compiled a Standard of Care for toddlers, children,
adolescents and adults with FAS/E and our knowledge and expertise are
now being recognized in federal agencies, we will be working with policy
makers and scientists to design research protocol which will document
and evaluate not only demonstration projects for basic interventions,
but actual methods of treatment.

The reality of these unique events and their possibilities was recently
validated through the evaluations of our conference in Everett,
Washington on October 8 and 9, also called, "FAS/E: A Standard of
Care."2  Participants said that they felt excited, supported, understood
and hopeful about what they learned. In fact, on Monday after the
conference, Vicky got a call from a very excited woman who told her,
"You know my co-workers told me not to come to your conference because
it would just be the same old material we've heard before. But
everything was new! I can't wait to get to work and show them all the
wonderful handouts and brochures and tell them all the things that I
learned!"

Other evaluations of the conference were equally as positive. A parent
wrote, "It was joyous to be with so many people who loved FAS kids! I
felt at home." A teacher said, "This was an excellent conference! Well
put together, organized and full of excellent information. Thank you; I
learned a great deal about the disability. As an educator, I appreciated
the information from a parent's perspective - what works and what
doesn't." A child/family advocate commented, "The family interventions,
i.e., Standard of Care, will be very important in my advocacy work for
kids. An excellent conference, we need it here in our area [of
Spokane]!"

These are encouraging words but we must never loose sight that it takes
extraordinary devotion and personal focus for parents to be able to
stabilize children with FAS/E and boost their self-confidence. Self
esteem is the icing on the cake. But the proper basic ingredients to
make the cake itself must be available before the cake can be frosted.

According to Senator Daschle's legislation, it takes over a million
dollars to care for an individual with FAS/E. Many families still
struggle alone with absolutely no help from social services. This
situation must change if we are going to keep individuals with FAS/E and
our communities safe. The conference in Everett provided a wonderful
circle of support for all of us. We must use the energy it generated to
continue the momentum to help all individuals with    FAS/E and their
families.

Reprinted from FAS Times, Winter 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.)