FAS/E: A Standard of Care for Adults
The Dysfunctional Years
Jocie DeVries

My final year of denial that something was wrong with my son, Rusty,
began in September 1989 when I enrolled as a student at The Art
Institute in Seattle.  It all seemed so innocent and natural at first.
I had spent 24 years as a stay-at-home mom raising four spunky kids. My
baby had entered high school so my husband and I started to prepare for
an empty nest.
I did really well at The Art Institute (3.7 GPA) but understood quickly
that I had much to learn.  One day as I was admiring an illustration
that another student (young enough to be my child) was working on. I
said, "That is exquisite! How did you learn to draw like that?" He
looked at me like I was crazy and said, with the arrogance of a great
artist, "First you need to learn to observe."  At first I was really
annoyed and thought he was just being sarcastic, but the more I thought
about it the more I realized what a truthful statement he had made.

Of course with me too busy to provide firm structure for Rusty and
Cheryl, they took off in separate directions generating clouds of chaos
everywhere they went.  My hope for an art career vanished like dew in
the morning sun as I realized that something was terribly wrong on the
home front.  I was upset but had spent too many years as a full-time mom
to fret about a lost art career. My children's future was in jeopardy
and I was determined to discover why.  As my husband says I am very
easily amused (and I have always liked my own company) so I dropped out
of art school and began the journey on another learning curve trying to
figure out what made my children tick.  I started reading everything I
could get my hands on regarding the human brain and what makes us
different from other mammals.

Raising four kids on one paycheck didn't leave a lot of "research" money
so I bought myself new brain books as Christmas presents from my
husband, Don. His job was to write something romantic to me in the front
of each book. One year the book's title was The Brain, so in this one he
wrote, "I hope you like this book about me."  The next year the brain
book was entitled, The Amazing Brain, and he wrote, "Merry Christmas to
my honey who has a mind of her own."
Then one day I heard something on TV about a book detailing new research
on the two different sides of the human brain and how this could help us
understand and learn more easily. I was impressed that this wasn't some
crackpot idea because the scientist, Roger Sperry, had won a Nobel Prize
for his proof of the split-brain theory which says "that our
problem-solving skills, physical and mental abilities and even
personality traits are strongly influenced by our habit of using one
side of the brain more than the other side." I also learned from
Jacquelyn Wonder and Priscilla Donovan in their book, Whole-Brain
Thinking, that brain bias explains why one person is a math whiz while
creative types often flounder when trying to balance their checking
accounts. (This is a book I enthusiastically recommend.) They go on to
say in their book that "the ideal person has strong skills in each
hemisphere and can move into the appropriate one when that skill is
needed." I was hooked. This solid scientific research also seemed to
give validity to the 4 temperament theory that I had been using to build
self esteem in my kids. (See FAS Times, Winter 98.)

I began reading everything that I could find on how to utilize and
explain this theory of brain function and learning. I read Thomas
Blakeslee's, The Right Brain.  This book (also highly recommended)
details the brain's "two languages." "Since the left and right brains
are organized differently, it is easy to see why the memories of one
side are not useful to the other. The left brain handles complexity by
sequences of small logical steps. The right brain's holistic feel for
throwing a ball on a windy hill is likewise of no use to the left brain.
The two kinds of brain organization simply store knowledge in a
different form - almost like a different language."
Nobel Prize winner, Roger Sperry, and his colleague, Michael Gazzaniga,
continued this line of research proving that something called the corpus
callosum serves as a bridge between the two halves of the brain, letting
the right hemisphere of the brain know what the left hemisphere is
doing.

My husband, who is a tennis player, told me that if I wanted to
understand how to put this theory into practice that I should read
Timothy Gallwey's book, The Inner Game of Tennis. Being a stubborn cuss,
I thought to myself, "Now what could a tennis book teach me about the
brains of my children?" Later, however, when I saw a TV interview with
the author, I went to the library and checked out his book.  I was
totally thrilled with what I learned and promptly purchased every book
he had written. One book review read, "Tim Gallwey is the most
interesting writer on tennis to appear in many years. It can be stated
without doubt that reading Gallwey literally reveals you to yourself."
(Jack Barnaby, past president, U.S. Professional Tennis Association)
Reflecting back to that period in my life, just before Rusty was
diagnosed with FAS, I did discover that a tennis book could indeed teach
me a lot about my children because it taught me how to observe.

The basics are this:
1. The human brain is put together sort of like a walnut. There are two
halves, called hemispheres.
2. Each hemisphere picks up information from our environment through our
eyes, ears, nose and sense of touch.
3. The bridge between the hemispheres is called the corpus callosum. Its
job is to integrate all the information so we can have a complete
picture of what is going on around us.

It works like this: your left side (left brain hemisphere) is typically
used when speaking or balancing your checkbook. The right side (right
brain hemisphere) is the part of your brain that has instant recognition
of the face of your best friend when you see her walking toward you at
the mall. You know immediately if she is fatter, skinnier, or more
wrinkled. Your right hemisphere is also quicker than the left side . .
.you may have a "hunch" something is this way or that, but you have to
"engage" your left hemisphere in order to "figure it out." The right
brain communicates with you by flashing images into your mind. For
example, if I ask you, where is the information desk located in your
community library, how do you find the answer to that question? Most
likely a picture of the room just appears in your head. That is how your
right hemisphere talks to you.

However, we have a problem. The problem is that the left side, the
verbal side, can be very critical of the information that is picked up
and processed by the quiet right side. This becomes even more difficult
when we want to work with individuals with FAS/E because our talkative
left hemisphere keeps interrupting or interpreting what we are observing
(based on our education, experience with other children, etc.). But to
understand a person with FAS/E, we need to learn to create a quiet zone
inside of our heads and observe for long periods of time without giving
ourselves a running verbal commentary on what we are seeing. Learning to
see, while refraining from inner self talk, is not an easy thing to do.

But if we can master this type of observation, we can interpret our
disabled children in a very interesting way - by trusting our instincts
and intuition on a very deep level. For example,    after many years of
observation and experience, some parents gradually come to realize that
the behavior of their   children with FAS/E is not based in evil,
defiant or predatory intent. (This information is very valuable to the
person who wants/needs to represent an individual with FAS/E in a legal
arena.) In reality, their behavior is a direct manifestation of their
neurological brain damage. This damage results in a short-circuit of
their brain functions - in difficulty receiving information from their
senses and analyzing and integrating that information.
So learning how to observe is important for two reasons. First,
individuals with FAS/E usually have a lot of issues and it takes intense
observation in order to understand and separate them. Once you have
identified the issues, then the next task is to explain all of this to
the disabled individual. There are many ways to accomplish this goal. I
used cartoons, such as the one below, to explain these complex issues to
my children.

Everyone has a Hurting Place
I called the black hole the "Hurting Place" which often makes us hug
ourselves or rock while we're in emotional pain. Sometimes I just talked
to my children about the fact that when the black hole opens up (like
the shutter in a camera lens) and the pain is so intense and
distracting, nothing else seems very important, such as going to school
that day. At other times we talked about the black hole itself, that it
is really a puzzle made up of many different pieces.

Some of the puzzle pieces of pain may come from sources such as:

   * early (and sometimes ritualistic) sexual abuse;
   * deprivation and neglect, e.g., not having enough food as an infant;
   * loss and grief from the "sudden" disappearance of their birth
     mother, grandparent and/or dad.
   * not understanding why they continue to get into so much trouble

Learning to help individuals with FAS/E also means understanding your
own strengths and weaknesses and how to be extremely effective in the
use of your own brain.  This is the second reason it is so important to
develop good observation skills. You must learn to observe and know
yourself so well that you can trust yourself enough to establish your
own boundaries. Since our children with FAS/E have no boundaries of
their own, we parents must set them. For some, the day will come when
you say to yourself, "I really can't do this anymore." If you do get to
that point you must be mature enough to have confidence in your ability
to make good decisions.  We also need to understand the stresses that
burden our spouses and discern the effects on our other children.

Sometimes it's OK to say this kid is outta here (usually during the teen
years when they get bigger than you are) and place him in residential
care.  Sometimes its OK to say this child is going back into state
foster care.  Sometimes it's the best decision to place the teen in
inpatient psychiatric treatment.  Sometimes as they reach adulthood, its
OK to say, "I love you with all my heart and will help
advocate/interpret for you, but you and I cannot live in the same
house."  In any of these situations, the family should maintain contact
with the child, if at all possible, in order to continue the bonding
process that takes so long in our kids. People don't all have to live in
the same house to be a family. Sometimes living in separate houses
actually improves the relationship.

Today when I look back and think about my experience at The Art
Institute, I giggle to myself as I remember that kid and his remark
about learning to observe. It was such a great moment because he made me
really stop and think. It may take me a while to figure things out, but
I love it when many sources converge to make the same point.

As you read this issue about the adult dysfunctional years, grief may
open up your hurting place again. But that's OK. Only after grief has
been acknowledged and expressed, can the healing begin. Then your energy
will return and it can be directed to helping your child once again.

Reprinted from FAS Times, Special Edition 99.

(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.)