HOPE FOR THE FAS/FAE CHILD

An Educational Approach for Success in the Classroom

PREFACE

My association 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.

Maureen F. Murphy

Lower Kuskokwim School District

Bethel, Alaska

OUTLINE:

THESIS: 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.

INTRODUCTION

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 its victims.

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.

However, there 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.

The effectiveness 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.

The situation 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.

THE SOMEWHERE 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!

She moaned 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.

WHAT WORKS

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

Education should 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.

In contrast 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.

Early intervention 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.

Isolated intervention 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 skill development.

The programs 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.

Responsibility 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 and counsellors.

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.)

LKSD parents 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.

The adaptations 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 Success

The structure 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.

The FAS/FAE 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).

The construction 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!

We construct 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

"Bill 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).

Behavior - Hands in mouth behavior

"Bill 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 of program.)

Behavior - Targeting recovering skills

"Bill 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

Bill needs 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 and Ideas).

The Task - Trying to teach academics

"Bill 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

"Bill 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 three.

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 self.

Educators need 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 their needs.

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.

He repeated 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.)

This particular 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.

Singing became 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 sleep.

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.

The structure 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!

D. COMMUNICATION - 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.

E. BUILDING ON STRENGTHS

This ideal 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