FOR THE FAS/FAE CHILD
Educational Approach for Success in the Classroom
Maureen F. Murphy
and experience with children and adults with Fetal Alcohol Syndrome/Fetal
Alcohol Effects (FAS/FAE) has largely come through my time at a
small contract school in Northern Arizona, St. Michael's Association
for Special Education. The town and school of St. Michael's are
located on the Navajo Reservation. I was employed at the school
for six years, five years as a Teacher and one year a combined Teacher/Activities
Director. I was in direct contact with several children and adults
who had FAS/FAE. The staff at St. Michael's did not seem to realize
that there was a problem deciding which approaches were successful
and which were not. They simply did what had to be done. I was surrounded
by clever and caring individuals, my. beliefs, perceptions, and
methods of approaching the FAS/FAE child come from my contact with
these people. I am now employed by the Lower Kuskokwim School District
(LKSD) as an itinerant teacher/caseworker for the multihandicapped
children in the district. I continue to work with children who have
FAS and I have become an active member of the Bethel FAS Task Force.
If anyone would
like to contact the school. I would suggest contacting either Velme
Spencer, the Program Director or Rita Upshaw, the school's Social
Worker at (602) 871-4811.
The FAS/FAE child is not a hopeless case, he/she is simply a nowhere
child, never quite fitting. into any setting. The children already
in our schools and the ones that are yet to arrive can learn and
we need to offer them an environment and educational program which
will insure that they do learn. There needs to be radical changes
in our classroom structures and attitudes if we are to give these
children a chance to develop and maximize their unique potential.
There are many
types of FAS/FAE children to address when trying to develop educational
approaches. What we can do for any of these children will hopefully
improve in the years to come. FAS/FAE children are presently nowhere
children and they will remain as such until their educational needs
are comprehensively and dynamically addressed. School districts
and communities have not, as yet, given these children the consideration
or service that they need and will not until they believe that these
children have a future, and belong in our schools. Rather, everyone's
focus remains on the issue of FAS/FAE and not on what to do for
So much more
is known and is continually being researched in regards to the biological
causes, physiological effects and legal ramifications of FAS/FAE
on a child. Possible side effects like: hyperactivity, impulsivity,
mental impairment, eating dysfunction, poor attending skills, and
impaired health, vision, and hearing are now accepted ad indicators
of who this child might be. Health education programs and health
care professions are working harder to stop this 'totally preventable
birth defect" by educating community members on the hows and
whys of not drinking while possibly pregnant. Whole communities
are trying to band together to resolve the social causes of this
disease by implementing treatment programs and some controversial
intervention methods to stop pregnant women from drinking. Courts
are grappling with the legal issue of an unborn child's night to
a healthy life.
is still the vital issue of what to do for FAS/FAE children in our
schools and those yet to come. This issue has never been addressed
on a comprehensive level. Consequently, history shows that the FAS/FAE
child has seldom received the consideration or services that he/she
needs. The FAS/FAE child, has been traditionally, the child who
has slipped through the educational cracks or ended up in programs
that could not understand their needs and therefore could not meet
them. This situation has left many individuals extremely frustrated
or hurt. At times these Individuals are left alone until the problem
becomes out of hand and everyone is left without answers. Too many
of these children are misdiagnosed and never accepted or who they
are and therefore, end up nowhere.
More and more
classroom teachers, administrators and parents are aware of the
problems that the traditional educational environment poses for
the FAS/FAE child. Expectations in terms of attention, handwriting,
abstract learning methods, and high pressure testing work against
this child and his/her social achievement abilities. Some educators
and parents no longer believe that these children are simply problem
and they are developing answers as to how to better target and service
the strengths of these children in order to maximize their abilities.
These individuals have found: clever ways to by pass labelling issues,
interesting ways to structure classrooms and activities, persuasive
ways to access early intervention services and maintain these services,
and innovative ways to integrate valuable supportive services into
the classroom setting.
and validity of the knowledge and methods of teaches and parents
working with FAS/FAE children has yet to be proven, as there is
not standard way to share or test these ideas. Some educators have
operated for years thinking that they were alone in their quest
to provide such children with a solid education. They had no way
to know if their procedures were right or wrong. It is very important
that there be a system in place whereby @he experiences of these
people can by systematically studied and shared. In this way the
FAS/FAE children in our schools will be better services and educators
and parents will not end up feeling that their child is lost.
It is unfair
that any child be "written off" simply because he or she
has a medically diagnosed condition. The challenge of unlocking
the secrets of success with these children should inspire everyone
in the educational setting. Comprehensive educational materials
and guidelines for servicing children with FAS/FAE, rooted in practical
theory and practice, will help to alleviate the questions and concerns
that arise in most school districts on how and why they should provide
service to these children. The cloud of complacency, despair and
ignorance that surrounds the FAS/FAE child in terms of accessing
an appropriate education will have to rise and disperse as more
practical hands on material and advice is presented to people. It
is my intention to present a unique view on what can be successful
in the classroom. This is a theory based on classroom experience,
trial and lots of error, and solid training in sensory stimulation
methods and behavior management. My views differ from other people's
and from general educational practices. The reason for this difference
is due to the variety in the situation I address.
presented deals with the ideal, what would work if we could start
at the beginning of a FAS/FAE child's life and continue working
this child through his/her educational career. These views call
for radical rethinking and general acceptance on the part of the
traditional school districts as well as society. I don't pretend
to know all the answers, but I think that I have some, and look
forward to discovering more.
WAY - LET'S BUILD THE IDEAL
The very first
time I encountered a child who had FAS was when I saw this small
individual throwing rocks at another disabled student at the request
of a friend. When I ordered him to stop, and went to assist the
wounded child, the child who had FAS flipped me off, mumbled some
interesting words and went on his way as if nothing had happened.
I reported the incident to this classroom teacher as was policy.
She rolled her eyes, said something to herself, and swore to kill
him the next time she saw him.
I was shocked
by the frustration in her voice and listened in confusion as she
detailed, her obvious dismay over having this particular eleven
year old child in her special education class and not knowing what
more to do with him. This woman was a good veteran teacher. I thought
she was fair, creative, well-liked, and innovative. I couldn't believe
that a child that small could bring out emotions and feeling of
inadequacy which were so overwhelming!
about dealing with FAS children and at the time, that meant nothing
to me. I remember thinking "I have lots of children with lots
of syndromes, what difference does it make?" That was seven
years ago. I was a young first year special education teacher from
New Jersey, starting a job at a small school on the Navajo Reservation.
I learned a lot about FAS/FAE over the course of the next six years
living and working in St. Michaels, Arizona. The school at St. Michaels
has a small day/residential special education program that services
130 individuals and consists of 14 classroom, each standing as an
individual unit. We had a lot of freedom regarding curriculum choice
and development, and our selections. were guided by discerning and
informative administrators. The program serviced children and adults
that the outlying districts across the reservation, for a variety
of reasons, could not. The school is funded by the school districts,
the Bureau of Indian Affairs and the Navajo tribe.
Most of the
Native clientele were the children for whom little or no formal
curriculum training was readily available. We all forged our way
at St. Michaels and together, the teachers, nurses, occupational,
physical, and speech therapists, and paraprofessionals, developed
answers and information to match each student's needs. Some of the
best and most useful answers in terms of the FAS/FAE children came
from the most unlikely of sources.
It is only
now, in moving away from St. Michaels, that I can see and appreciate
some of the unique and practical things that I learned and how these
ideas can be utilized in a variety of settings and for a variety
of children. The ideas presented here are for a classroom teacher
from a classroom teacher. I arrived at these ideas by listening
and trying things out. These ideas belong to a lot of people who
assisted me out along the way. I was not in this alone, I'm happy
to say, because no one can imagine the frustration and despair of
feeling alone when you are starting a classroom and encounter a
child that people tell you there is "no hope for'. There is
hope, and no one need feel alone.
While at St.
Michaels I encountered twenty children with FAS/FAE. I had direct
contact with all of these students because I served as a teacher
and Activities Director. The children had a range in their cognitive
abilities and physical conditions.
Some of the
children were physically involved, had seizure disorders, cleft
palettes, kidney and heart problems and mental impairment. Some
of the children were well in the 80 and above IQ range and had few
physical limitations. The first step in the ideal program for any
of these children or any child with FAS/FAE would be early intervention.
A. EARLY INTERVENTION
- GIVE ME A FOUNDATION
begin at birth. Herein lies the problem of appropriate and timely
labelling and referral. It is vital that doctors become better informed
and trained in the diagnosis and referral of children with FAS/FAE.
If and when a child is diagnosed as having either condition they
should be provided services on a daily basis either through the
hospital or school district.
At the school
in St. Michaels our FAS/FAE referrals came directly from the hospital
or the Division of Youth and Family Services. The children were
placed in an all day intervention program as early as one week of
age. Children who were with the program from that young age seemed
to make the transition to the public school kindergartens more quickly
and successfully than children who had no formal intervention. We
were very direct with the Navajo parents about the need for early
service in the FAS child's life. Generally, this approach worked
as the Navajo parents liked straightforward advice and details.
Parents were most often told of this particular diagnosis by a physician
who then in turn, referred the family to the school. The child was
then treated as one that was certain to have trouble reaching developmental
milestones and was enroled in the Infant Stimulation Program.
I find that the topic of FAS is talked over in the LKSD. It is acknowledged
as a problem but shrugged off as needing a solution. I feel that
the Yup'ik parents would be accepting of the need for early and
continued services if the issue of avoiding later breakdown was
explained and documented for them.
helps to direct the skill level of the child and the family. Sensory
stimulation works towards reducing early impulsivity, hyperactivity
and increases the ability to effectively interact with the surrounding
environment and peers. Early intervention assists in monitoring
the need for additional services at home regarding the unique health
needs of the child and parent training.
by infant learning specialists helps but the amount of intervention
they offer is not enough. Intervention at this level needs to be
daily so that the family and the child are working on appropriate
that these children need involve a large amount of sensory stimulation,
vestibular input, oral stimulation, kinaesthetic processing activities,
and speech/language activities. A list of sample activities can
be found in example one.
for early intervention to children in remote areas should fall to
the school district and the infant learning team. While the Infant
Learning Program team sets up and monitors a program, the school
district staff in an area helps the family to carry out the program
via home visits. Social services for the medical and family needs
of the child should be addressed by Health Corporation social workers
One of the
dangers of early intervention is that when this child, arrives at
the kindergarten class he/she often appears to be fine and is no
longer in need of further supportive or special services. This is
a problematic issue because when services are terminated at the
kindergarten level, problems arise later as academic requirements
increase and change with age. The children's limitations will affect
their performance, (i.e. fine motor problems and visual processing
skills affect writing activities.)
have obtained continued services for their children by having them
classified as Other Health Impaired by a doctor. This places FAS/FAE
into an accepted special education category and mandates that the
child have an individual Education Program (IEP). Once FAS/FAE is
correctly identified appropriate and effective use of the IEP will
insure adaptations to the educational environment so the child can
learn. Families who have had the most educational success in terms
of their child have been those families that have been willing to
PUSH the district to recognize their child's unique approach to
learning. At present I find in LKSD it is the parents who provide
the teacher with educational insight and alternatives.
to the environment and program of the FAS/FAE child are what will
insure success for the individual. It will be the role of the parent
and classroom teacher to build a world that will teach the child
to reduce the need for constant intervention. The art of constructing
the environment is the next step.
B- THE STRUCTURE
- BUILDING SUCCESS
How To Construct
of a good program for an FAS/FAE child is the most important element.
Many people believe that structure means regimentation or rigidity.
That is not necessarily so. Structure simply means constructing
the child's environment so that it is directed toward that child
as an individual.
child's day must be carefully constructed so that the child learns
that he/she can succeed. Success means the incorporation of options
into the framework(/ of the child's life. It does not mean robbing
oneself and the child of spontaneity or naturalness. The structural
foundation of a child's day allows for appropriate programming in
all situations. Programming aspects are. changeable within the structural
core. (See Sample Activities and Ideas).
process begins when he/she awakes and ends at bedtime. Successful
structure must include parents, teachers and peers. The goal of
structure is to produce a child who will be able to function in
all situations without becoming overly frustrated or unreasonably
unproductive. Now that is an incredible goal!
an environment for these children with options that address academic,
behavioral and social goals via sensory and behavior intervention
methods. Options are the basis of structure. The. existence of options
allows the child to independently experience success.
Memory - Trying
to teach a child to remember a schedule
what do we do today?" Option one is memory recall (Bill remembers
and acts). If Bill does not act, "Bill what did the pictures
say we would do today?" Option two is remembering by looking
at pictures that were drawn the night before concerning the schedule.
If Bill still does not act "Bill sing me today," and Option
three is remembering music, commonly a silly song about the day's
schedule. (See Sample Activities and Ideas).
Hands in mouth behavior
where should your hands be?" Option one involves a social reminder.
If Bill's hands do not go down or are returned to his mouth after
a minute "Bill your hands need help." Option two he places
hands on vibrators taped under the desk, or near by. If hands still
are in mouth, "Bill, maybe your mouth needs help." Option
three is to have trained the child to do some oral stimulation on
his mouth. Be aware to the child's bodily needs. (Hands in mouth,
or sucking fingers, is a common behavior (problem) with FAS children.
It is one of those activities that they seem to not outgrow for
various reasons. I always approached it as a sensory need, in terms
Targeting recovering skills
you are getting too silly." Option one is a social reminder.
Bill, take some time." Option two is the use of what we call
a focus room. The child would remove himself to the room and sit
until he though he was ready to come out. "Bill I'll give you
help." Option three was either Bill and the teacher or a peer
went into the focus room and either reviewed behavior goals or sat
in silence. I found with this particular setup I had a lot of success
as student beginning to be able to target times where they knew
that they were losing it and needed to leave and in 6 of 10 cases
they returned to the activity of their own.
As a child
that cannot give him/herself the appropriate amount of sensory stimulation
or control, the first key to constructing an educational environment
is to provide that stimulation or means of control. Structure the
child's program and tasks so that there are options. This does not
mean providing a visually stimulating and therefore distracting
environment. This means understanding the basic make up and needs
of the FAS/FAE child and building on them.
The Seat -
Trying to get in seat behavior
to move and he is constantly out of his seat. The problem here is
that he must move and you want him in his seat. The answer would
be to make the chair movable. We velcroed a hippy-hop to the floor
and put it inside a tire. The child could bounce but not go crazy
plus he got OT intervention and could work on language arts activities.
There are many ways to make movable chairs! (See Sample Activities
The Task -
Trying to teach academics
tell me the numbers that we did yesterday." Option one was
any simple method of visually presenting numbers and expecting memory
recall. "Bill tap out the numbers we did yesterday." Option
two was presenting numbers paired with a concrete method of pairing
auditory input with cognitive function. 'Bill type out the numbers
that we did yesterday." Option three is technology assisted
recall. Keep all the lessons very concrete.
The Task -
Trying to get written output
please write what is on the board." Option one is any standard
handwriting method. "Bill if writing upsets you today, type."
Option two is typing. This mode worked really well in my classroom.
"Bill I need the answers on paper.' Option three will depend
on the make up of the school. In a school with computers all technology
should be put to use. Computers are option three in this case. In
districts without computers, a peer assisted output paper is option
I worked in
a three option system because it was efficient and easy for the
child to follow. Three options seem to afford to the child the range
of choices they need and are able to process. This panidular system
assists in not limiting a child in terms of responses, it does not
always come down to "when you are wrong, you are wrong, because
one child has options that may assist him/her in recovering his/her
to rethink the traditional chair desk setup, the benefits of object
manipulation and the method of traditional communication between
instructor and student. Every effort needs to be made to keep teaching
simple and structured. Methods of instruction need to be clear,
concrete and functional, avoid new philosophies. Community based
instruction is a powerful way to insure the carry over of skills
for the FAS/FAE child. However, this type of instruction is not
always easy to implement. When possible, teach money skills in a
store, or use the bank. Getting out of the school environment and
having students interact with community members in functional situations.
Role playing is then an extremely effective way to practice skills,
playing store, mocking an interview or job situation is a good way
to understand how children perceive things and how to program for
C. THE SENSORY
STIMULATION KID - STAN
Giving A Child
lnput. Activities for Stan and Solutions
I spent one
whole year drawing the world for an FAS child. I didn't mind because
1) he remembered the things I drew and 2) he began to dote over
details. Every morning, after a run, we started our day with a detail
of everyone's activities from the night before. We were practising
memory recall skills. During one session Stan, a five year old FAS
child, asked me to draw my evening. "Show me Maween! Dwaw it
fow me!' I was a little confused at first.
his request and I drew out my evening. I separated each part of
it into blocks and targeted one activity. At the end of the day
we reviewed the events since morning. Interestingly, Stan remembered
little of his day but recalled all the details of my night.
We added drawing
as part of our routine. Stan liked to have the pictures that we
drew involved. He would ask questions like who was there? What was
on the table? If I asked him the same questions as we drew out his
day, he concentrated and was able to recapitulate exact details
for the picture and
began to get
an idea of sequence. He amazed me at times with his accuracy! (I
checked his details with his family or grouphome parent.)
activity was only successful if I drew the pictures. If Stan was
required to put the day on paper the task broke down. We elaborated
on this system and made lots of things into pictures; his schedule,
the ABCS, numbers, fruit groups. Stan was doing some type of break
down processing that neither I or the OT could explain. It was necessary
for us to produce the pictures by hand or our success was lower.
(At times we cut things out of magazines but this did not have the
same effect.) Stan's cognitive skills improved 60% in terms of his
IEP goals for the year.
I spent another
large portion of that year singing. I sang about lunch, about the
desert, the moon and cars. And I sang because I knew that the children
were learning, especially Stan. I don't know a lot about music,
but I had to sing, and sing a certain way. During uncertain stretches
in the day, just when I would think that Stan wasn't going to accomplish
any thing, he would say, "Sing it to me." Amazingly, he
would then sit and listen, for periods up to 25 minutes. If I cued
him later with a verse I repeated in the song, he would recall details
and was pleased by what he remembered.
an option in Stan's program. I used it as a behavior modification
technique, as Stan began to get off task I would sing and bring
him back. Stan was the sensory stimulation kid! He rocked, he grabbed,
he rubbed his face until it was raw, he drooled when he wrote, he
crossed his eyes, he could swing on the playground for 30 minutes
or more nonstop! He could also be the most loving and endearing
child in the world. From the start of the year to the end Stan was
a new child. The level of intervention was high and consistent.
He had to come
to our program at age four, a preschool throw out, He had had consistent
problems with inappropriate touching issues. Stan did well within
the structural foundation of the classroom. He had a movable chair,
he was seen by a counsellor, he received OT/PT services and lived
in a structured grouphome setting where they swaddled him to induce
I could measure
that Stan was learning. I called to check on him at the beginning
of the year and I learned that his services had changed again, and
that Stan was "failing apart'. Last week I called again and
Stan is doing better' The paraprofessional who work with him stated
that they are using some type of drug therapy intervention.
of Stan's program and his living situation had altered. He was nine
years old at that time. Children like Stan need the guarantee of
a framework that will not change due to staff turnover. A formal
curriculum dealing with the needs of FAS/FAE children must insure
a structural skeleton that can not be changed. This curriculum must
be in place for at least the first eight years of school. Intervention
by social workers at home and school will need to be formally built
into any curriculum to insure consistency. The high level of intervention
that a child like Stan needs can be given. All of a FAS/FAE child's
sensory needs must be carefully and continually addressed. This
child can learn, cope and independently survive. The sensory stimulation
kid can have a home!
- BE QUIET AND TALK TO ME
How to Talk
With the Child
During a math
lesson, one of the boys in the class that has FAS looked at me and
said, "Be quiet and talk to me." I wasn't certain how
to respond to that. We (my paraprofessionals and I) noticed that
he stuck his fingers in his ears before an out of seat behavior
occurred. He was always saying "Be Quiet!" during structured
cognitive activities, even when no one was speaking. He talked to
himself all the time. He loved country style music and could listen
to it for hours. If the type of music was switched to rock he became
stressed and would start to move about, still insisting that he
liked the music.
I believe that
he was only able to process things that were presented in short,
direct and calm manners. This includes tone and style. If he did
not get the whole of what was presented he either came up with a
wrong answer, action or gave up. When we broke down directions to
the most basic of detail we had success in terms of compliance and
learning. He almost seemed to order his environment in pieces, small
pieces. A verbal cue paired with a picture helped. But overall,
keeping directions short and consistent was the key. In a way that
is like country music! The FAS/FAE child's ability to process verbal
information is some how different and limited. This was something
that was constant in all the children. This may also be a larger
part of the issues of distractibility, and learning failure. These
children tended to have more success with activities where little
verbal direction was involved.
program is based solely on recognizing the needs and strengths of
individuals who have FAS/FAE. They need to have choices. They need
to learn how to access choices that will lead them to independence.
Individuals with FAS/FAE see the world concretely and when programming
for their needs we need to listen to what they are saying.
Hear them when
they say that there are too many words in your directions. Watch
them and learn what inappropriate sensory activities they engage
in. Give them release from the traditional traps of the desk and
preprinted book. This is a child with a tremendous amount