The Challenges of Teaching Children with Fetal Alcohol Syndrome

Abstract

FAS is the most prevalent cause of mental disorders in the United States. There are numerous negative effects associated with this disorder that impact the social, physical, cognitive and behavioral development of the individuals. FAS poses significant challenges for the teacher and the student within the classroom. IDEA requires these students to be oriented in the general education classroom. Stakeholders in the education of FAS students need to take into consideration their various challenges and design programs that would appropriately meet their individual needs so they can be effectively oriented in society. There are still areas of research and development needed to further an understand of FAS and its related disorders and efforts should be made to resolve these.

Introduction

The educational system within the United States has undergone a number of structural and policy changes in the last few years specifically as it relates to special needs education. The focus of policy makers and educators, as demonstrated in the newest Individuals with Disabilities Act (IDEA) is for improved access to education for individuals with disabilities. IDEA specifies that students with disabilities must be allowed in the general education classroom with their peers who do not have disabilities. The entrance of individuals with all classes of disabilities into the general education classroom is taking place along side other education trends towards diversification. The American school population is seeing the ration of ethnic minority groups increasing and more and more research is showing that even the able have their own special needs in the classroom.

With all these trends combined it is becoming increasingly challenging for teachers at all grade levels to effectively meet the need of each child within the confines of the school day and a school curriculum. Fetal Alcohol Syndrome (FAS) represents the most prevalent cause of mental retardation within the U. S. population and therefore presents some of the most serious challenges for teachers and other educators who are required to devised effective means of meeting their special needs.

IDEA aims to ensure that persons affected by FAS are given an opportunity to benefit from education as provided by the state. However, despite the requirements of the Act it is evident that numerous students are still been relegated to schools and classes separate from individuals without disabilities. Furthermore schools often lack appropriate facilities or personnel to effectively cater for these special learners. Within some of these settings they are thereby robbed of the maximum opportunity for an adequate education as prescribed by IDEA. Teachers and educators, however, need to ensure that the principles of IDEA are maintained and that no child is left behind.

This research will present information necessary for a full understanding of FAS, its causes, effects and prevalence as well as the challenges it poses for the teacher and the school system. Subsequently information on strategies and best practices for dealing with the disorders associated with FAS will be examined. Later suggestions and recommendations will be made as how best to overcome some of the challenges related to managing the disorder in the school and the classroom.

Definition, Causes and Detection

Fetal Alcohol Syndrome occurs in children that with prenatal exposure to alcohol as a result of their mothers consuming alcohol during pregnancy (Loftus & Black, 1996; Duquette, Stodel, Fullarton & Haggulund, 2006). FAS is not a particularly new or recent phenomenon. Loftus & Block (1996) reveal that as far back as the 1800s researchers were noting the detrimental effects that alcohol consumption during pregnancy has on the unborn baby. Serious studies into the disorder did not appear until the 1970s. Work done by Jones, Smith, Ulleland and Streissguth resulted in the classification of symptoms evident in babies of mothers who consumed significant amounts of alcohol as fetal alcohol syndrome (Loftus & Block, 1996).

There are distinct classifications of the symptoms associated with fetal alcohol consumption and the overall effect on the fetus varies in intensity from child to child. Symptoms range from the very severe to the less severe. The term Fetal Alcohol Spectrum Disorder (FASD) is used broadly to refer to all intensities of the disorder. FAS as well as FAE (Fetal Alcohol Effects) and ARND (Alcohol-Related Neurolodevelopmental Disorder) all fall under the category of FASD (Duquette et al, 2006, p. 28). FAS is the most intense manifestation of the three.

Variations in the types of symptoms of FAS is often dependent on the quantity of alcohol consumed, the stage of pregnancy at which such occurs, the nutritional health of the mother, possible use of other drugs and particular sensitivity to alcohol. Loftus and Block (1996) note that FAS is usually more prevalent in cases where pregnant mothers consume 30-50 ml of alcohol daily. However, they add that only about 35% of heavy drinking mothers will have a child demonstrating FAS. Similarly consumption of only minimal amounts of alcohol during pregnancy can also lead to FAS complications. It is advisable therefore that pregnant mothers refrain from consuming alcohol throughout the duration of their pregnancy. It must be noted, however, that the disorder is not hereditary since women with FAS who do not consume alcohol during pregnancy have babies that demonstrate no sign of the effect (NOFAS, 2001-2004a).

The U.S. department of education developed a system that was recently modified that is used in diagnosing children with FAS and the other related effects. The four areas of growth deficiencies, facial anomalies, cognitive deficits and maternal drinking are rated on a scale from one to four with four representing severity and one representing no evidence of impairment (Miller, 2006). Based on the rate of each area a student is given a four digit number which is then matched with a profile of the disorder. An example supplied by Miller (2006) is 4324 which represents an alcohol exposed neurobehavioral disorder (p. 12).

Prevalence

The National Organization on Fetal Alcohol Syndrome (2001-2004a) identifies FASD as the primary cause of mental retardation and related birth defects within the United States indicating that its prevalence in 1 in every 100 live births representing 40,000 newborns each year. According to Loftus & Block (1996) the ratio is one in every 500 – 600 live births and Duquette et al (2006) puts its prevalence rate between 0.2 and 1.5 cases in every 1000 births depending on the region within the United States (p. 28). FAS. The disparity in the figures over the prevalence rate may be attributed to underreporting in some areas as FAS is not always easy to diagnose at birth.

The costs of providing services for individuals with this disorder is quite high. NOFA (2001-2004a) estimates this figure at around $800,000 per person each year. 2003 total figures were $5.4 billion dollars of which $3.9 billion was a result of direct costs and $1.5 billion for indirect costs. The Center for Disease Control and Prevention estimated in 2002 that the lifetime cost each was $2 million (as cited in Duquette et al, 2006, p. 28). Phelps (1995) further estimates that based on a calculation of 1200 children born yearly with FAS then the total costs related to their welfare is close to $250 yearly. The most daunting thing is that FASD is not curable and children do not eventually outgrow it (NOFAS, 2001-2004a) which me that they present significant considerations throughout their lifetime. Apparently these high figures, though varied, reveal that there are significant costs attached to providing services for individuals with FAS and other related symptoms.

Effects

FAS is diagnosed by examining both mental, facial and medical features. The facial features associated with FAS represent a key characteristic of persons with FAS. Among the prominent facial features are small eye slits, short nose, thin upper lip, and flat mid-face (Duquette, 2006, p. 28), indistinct or absent philtrum, epicanthic folds, an underdeveloped jaw, droopy eyelids, high arched palate (Loftus & Block, 1996) and several other features. Mental retardation is always quite prevalent with FAS because of abnormalities presented in the central nervous system. Attention deficits may also become evident. There are also several medical related issues such as cardiac effects, kidney, urogenital and liver disorders.

Physical and motor affects are also seen in FAS. Some individuals have visual and hearing problems (Loftus & Block, 1996), growth retardation is also very prominent as an continuation of intrauterine growth retardation which is evidenced mainly by a comparatively small head circumference (Duquette et al, 2006) as well as general body size.  Loftus and Block (1996) point to research suggesting that growth defects are associated with alcohol consumption in the last trimester of pregnancy and facial features linked with consumption during the first trimester. There are vision and hearing related problems (Loftus & Block, 1996). Individuals are therefore quite sensitive to certain types of sensory stimulation. Common motor disorders are with balance and coordination leading to an appearance of clumsiness. There are also a number of socially related effects. These include limited attention, planning, organizing, self-regulation, and self-monitoring (Duquette et al, 2006, p. 28).

Often, however, individuals do not possess obvious features that are immediately apparent to be related to FAS and as a result their condition may be overlooked (Duquette et al, 2006, p. 28). Previously mild manifestations of FAS were categorized as FAE signifying only partial syndromes (Loftus & Block, 1996). However this categorization has recently been changed as educators argue it is too vague a category. Therefore FASD is held as the overall grouping of all fetal alcohol related symptoms.

Teaching and Strategies

Individuals with FAS represent a significant number of the school age population. According to Loftus and Block (1996) these students make up approximately 3% of the school population in the United States. Their individual characteristics have to be considered by the teacher in the classroom to ensure effective learning and equal opportunity. The American Association of the Mentally Retarded establishes a policy that requires persons with disabilities, of which FAS is included, be adequately prepared for life and living by being presented with opportunities for learning and development. Education for these must therefore be inclusive, free and appropriate as specified in the acronym (FAPE) Free and Appropriate Public Education (AAMR, 2004).

Among the provisions made by IDEA for inclusion in the general education classroom are that each student be provided with and Individual Education Program (IEP). An (IEP) is a document produced for each student with a disability and contains, above all, goals and objectives that the child has to attain to throughout the school years. It also includes information on the individual’s performance, on classes taken, services accessed, guidelines for evaluation, details on required modifications and accommodations, relevant aids and support services. The IEP also gives details of recommended services to be accessed outside of the school setting (Walter, 2006). The IEP stays with the student throughout his school life and is even used beyond to ensure access to additionally services. This means that the document has to be reviewed and reworked every year to ensure meeting the needs of the disabled as they evolve. The message of the IEP is that educational and social services that are proffered to the individual with special need must take into account their varying competencies and needs and aim to meet these in the best way possible.

This also means provision of appropriate training for teachers and other individuals who interact within the school system so that they can accomplish the objectives laid down by the individual IEP programs. Providing appropriate intervention for individuals with this disorder cannot be left up to the teacher alone. Harpur (2001) suggests an entire team of individuals working together for the good of the children. These individuals include parents, guidance counselors, psychologists, social workers, nurses, physicians, psychiatrists, speech pathologists and countless others. As their needs are several so much be the resources and the personnel through who support is obtained.

Because students with FAS vary tremendously in their needs the teacher within the classroom should make all attempts to vary instruction as much as possible bearing in mind that no single curriculum can adequately meet the needs of all students (Burgess, 1994). Miller (2006) observes that students with FAS experience communication problems (p. 13). Teachers should therefore ensure that clear and proper instructions are given for completing tasks. NOFA (2001-2004b) recommends going through procedures step by step with students. Evenson and Lutke (1997) advise that simple language should be used talking in concrete terms and avoiding abstractions and generalizations. In order to develop their understanding of abstract concepts teacher should demonstrate the connection between them (Harpur, 2001) checking constantly to see if they are comprehending. Repetition is also essential (Evenson & Lutke, 1997) as well as talking slowly (Duquette et al, 2006) and giving simple, specific instructions one at a time (NOFA, 2001-2004b).

Additionally it is recommended that teachers experiment with different teaching techniques and modalities in the classroom. Duquette et al (2006) recommend more multi-sensory hands-on activities and concrete material ensuring that the visual, auditory and tactile senses are appropriately stimulated. They also advise that lessons should be relatively short and require a lot more student involve rather than being teacher-centered. NOFA (2001-2004b) believes that the use of hands on activities makes learning easier for these individuals as they are able to interact more with the lesson and make connects with concepts easier. They even suggest that computer technology can be incorporated in the classroom for students with coordination difficulties so that they are more able to complete tasks. Where such is not practical teachers should avoid the lecture as students may focus more on writing rather than understanding the lesson. If lecturing is necessary these students could be provided with printed copies of the material. Finally Duquette et al (2006) believe using humor in the classroom to make lessons enjoyable could also be valuable.

Other teaching strategies include the use of peer tutoring or cooperative learning instead of whole class teaching (Burgess, 1994). At the more developed ages opportunities should be provided for on the job training in skills appropriate to the needs of the students (Burgess, 1994).

Students with FAS lack organizational skills and require structure and consistency within a class environment that is does not change too frequently. Duquette et al (2006) proposes maintaining strict routines and class schedules for activities. Lists of routines and sequence could be posted or teacher could have the students create them or encourage them to use a planner daily.  Miller (2006) recommends helping them understand the time sequence of actions and tasks in the classroom and Evenson & Lutke (1997) advise parents and teachers to collaborate in using the same language and cues to maintain that structure. Harpur (2001) contends a well-structured, predictable environment, with clearly a outlined set of procedures, is the optimal environment for facilitating learning among these individuals and where changes are necessary they should be gradually introduced.

Teachers need to help these students develop appropriate social skills through direction instruction. Miller (2006) advises that emotional and behavioral disorders such as anger and aggression should be handled immediately and appropriately. Behavior training thus becomes necessary. Teachers should develop a system of rewards for positive behavior and consequences undesired one so that students can note the difference and aim to behavior in conformity with rules and guidelines. Furthermore, a survey conducted among a group of high school students asking for recommendations on teacher behaviors that they feel are best one suggestion was for teachers to help students take responsibility for their actions (Duquette et al (2006).

Furthermore misbehavior should not always be interpreted as deliberate rebellion but could be misinterpretation of procedures. NOFAS (2001-2004b) believes that punishment is not always the best answer in such cases. Overall teachers should carefully supervise (Evenson & Lutke, 1997) and monitor student behavior and learn to read the signs of frustration, sadness and anger. Furthermore positive reinforcement should be repeated including praise or incentives offered for good behavior. Teaching social interaction should begin from an early age (Burgess, 1994).

Recommendations

The following recommendations would be useful for educators, researchers and policy makers in formulating strategies to better address the needs of individuals with FAS in the classroom. Loftus and Block (1996) observe that no definite classification system exits for FAS. It would be useful if a system were designed to classify FAS so teachers would be able to plan how to deal with a range each class of its demonstration.

There seems to be inconsistency in the reporting of FAS. There therefore needs to be a more centralized database to more accurately record instances of FAS to understand fully the scope of the problem. Gessner, Bischoff, Perham-Hester, Chandler and Middaugh (1998) lament that FAS is not a “formally recognized category under the Individuals with Disabilities Education Act (IDEA).” Miller also observes that the disorder is usually clumped together under other IDEA categories (p. 12).

I believe if teachers are aware of this condition, given proper training and informed of exact students who have the disorder then facilitating them in the classroom would be easier. However, there is considerable difficulty in determining accurate FAS incidence rates. Major impediments are (a) difficulties in recognizing the constellation of FAS facial features.

References

AAMR Board of Directors & The Arc, Congress of Delegates. (2004). AAMR/ARC Position Statements: Education. Retrieved April, 12, 2007, from http://www.aamr.org/Policies/pos_education.shtml

Burgess, D. M. (1994). Helping prepare children with FAS or FAE for school and beyond. Alcohol Health & Research World, 18(1), 73.

Duquette, C., Stodel, E., Fullarton, S. & Hagglund, K. (2006, Nov/Dec). Teaching students with developmental disabilities: Tips from teens and young adults with fetal alcohol spectrum disorder. Teaching Exceptional Children, 39(2), 28-31. 

Evensen, D. & Lutke, J. (1997). Eight magic keys: Developing successful interventions for students with FAS. Retrieved April 12, 2007, from http://www.fasdcenter.samhsa.gov/documents/EightMagicKeys.pdf

Harpur, L. (2001, Fall). FASD teens in the classroom: Basic strategies. Guidance & Counseling, 17(1), 24-28.

Loftus, J. & Block, M. E. (1996, Fall). Physical education for students with fetal alcohol syndrome. Physical Educator, 53(3), 147-151.

Miller, D. (2006, Mar/Apr). Students with fetal alcohol syndrome: Updating our knowledge, improving their programs. Teaching Exceptional Children, 38(4), 12-18.

National Organization on Fetal Alcohol Syndrome (NOFAS) (2001-2004a). Teaching students with FAS/FASD. Retrieved April 7, 2007, from www.nofas.org

National Organization on Fetal Alcohol Syndrome (NOFAS). (2001-2004b). What are the statistics and facts about FAS? Retrieved April 7, 2007, from www.nofas.org

Phelps, L. (1995). Psychoeducational outcomes of fetal alcohol syndrome. School Psychology Review, 24(2), 200-212.

Walter, J. S. (2006, Dec). IDEA: The Individuals With Disabilities Act in your classroom. Teaching Music, 22-26.