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Fetal Alcohol

Spectrum Disorders handbook

A U n i ve r s i t y Ce n te r fo r E xce l l e n ce i n D e ve l o p m e n t a l D i s a b i l i t i e s E d u c a t i o n , R e s e a rc h a n d S e r v i ce


The Fetal Alcohol Spectrum Disorders Handbook was developed in part using federal funds through a grant from the South Dakota Council on Developmental Disabilities, visit their website at <http://dhs.sd.gov/ddc>.

Center for Disabilities Department of Pediatrics Sanford School of Medicine of The University of South Dakota Health Science Center 1400 West 22nd Street Sioux Falls, South Dakota 57105 1-800-658-3080 (Voice/TTY) or 605-357-1439 On the web at www.usd.edu/cd Via e-mail at cd@usd.edu


Table of Contents Welcome to the FASD Handbook! ............................................................................. 1-2 FASD FAQs.............................................................................................................. 3-4 Historical Overview of Fetal Alcohol Spectrum Disorders ............................................. 5-6 Incidence and Prevalence of Fetal alcohol Spectrum Disorders ....................................... 7 Characteristics of Fetal Alcohol Spectrum Disorders .................................................. 8-10 Current Diagnostic Criteria for Fetal Alcohol Spectrum Disorders ............................... 11-13 Primary Disabilities in Fetal Alcohol Spectrum Disorders ........................................... 14-15 Executive Skills .....................................................................................................16-17 Secondary Disabilities in Fetal Alcohol Spectrum Disorders ....................................... 18-21 Prevention ............................................................................................................... 22 Strategies for Home ..............................................................................................23-25 Introduction to Educational Techniques .................................................................. 26-27 Educational Techniques for Preschool Students ....................................................... 28-32 Educational Techniques for Elementary School Students .......................................... 33-39 Educational Techniques for Junior and High School Students .................................... 40-45 Websites .............................................................................................................. 46-49 Organizations ....................................................................................................... 50-53 Resources ............................................................................................................ 54-58 Bibliography ......................................................................................................... 59-60


Welcome to the Fetal Alcohol Spectrum Disorders Handbook! The Center for Disabilities is pleased to provide you with this overview of Fetal Alcohol Spectrum Disorders (FASD). This handbook uses the Institute of Medicine terminology. Fetal Alcohol Spectrum Disorder is not a diagnostic term but rather an umbrella term that covers both Fetal Alcohol Syndrome and Alcohol Related Effects. That terminology divides Fetal Alcohol Spectrum Disorders into two broad categories: Fetal Alcohol Syndrome (with or without confirmed maternal alcohol exposure) and Alcohol Related Effects which encompasses Partial Fetal Alcohol Syndrome, Alcohol-Related Birth Defects, and AlcoholRelated Neurodevelopmental Disorder - see the Current Diagnostic Criteria for Fetal Alcohol Spectrum Disorders article on page for more information. These terms do not include Fetal Alcohol Effect which is still frequently used in literature regarding Fetal Alcohol Spectrum Disorders. The term Fetal Alcohol Effect was often used as a diagnosis when full Fetal Alcohol Syndrome wasnâ&#x20AC;&#x2122;t present. The Institute of Medicine terminology helps to better identify the different categories within Fetal Alcohol Spectrum Disorders. While the term Fetal Alcohol Syndrome has often been used to refer to the entire spectrum of physical developmental and behavioral disabilities, it is important to remember that Fetal Alcohol Syndrome is only one part of an entire spectrum. This handbook is meant to provide a brief overview of some of the issues associated with Fetal Alcohol Spectrum Disorders and to direct readers to other resources. It is not meant to act as a diagnostic tool or as a comprehensive study of Fetal Alcohol Spectrum Disorders. In an effort to provide the reader with the most up-to-date information on Fetal Alcohol spectrum Disorders, the articles in this handbook refer to some of the latest books and journal articles on the subject. If you would like more detailed information, please consult the resources listed in the bibliographies on page 59 or the resources listed beginning on page 54 of this handbook. This handbook focuses on seven specific issues related to Fetal Alcohol Spectrum Disorders. History of Fetal Alcohol Spectrum Disorders Incidence and Prevalence of Fetal Alcohol Spectrum Disorders Characteristics Associated with Fetal Alcohol Spectrum Disorders Current Diagnostic Criteria for Fetal Alcohol Spectrum Disorders Primary Disabilities in Fetal Alcohol Spectrum Disorders Secondary Disabilities in Fetal Alcohol Spectrum Disorders Prevention of Fetal Alcohol Spectrum Disorders A section of frequently asked questions regarding Fetal Alcohol Spectrum Disorders begins this handbook to give the reader a quick overview of some of the most often discussed issues surrounding Fetal Alcohol Spectrum Disorders. This handbook also includes educational techniques for students with developmental disabilities which may be applicable to students with Fetal Alcohol Spectrum Disorders. A listing of resources is included to give the reader places to go for more information. These resources include websites, 1


organizations, books, videos, and journal articles. A glossary of terms is included to provide further explanation of some of the terms used in this handbook. As you read and use this Fetal Alcohol Spectrum Disorders Handbook, please keep in mind that the term Fetal Alcohol Spectrum Disorder (FASD) is used to describe a variety of diagnoses which encompass a wide range of physical characteristics, developmental difficulties and behaviors. Not every individual diagnosed with a Fetal Alcohol Spectrum Disorder exhibits every characteristic, developmental difficulty or behavior listed in the diagnostic criteria. There can be a great deal of variation in the severity of the characteristic, developmental difficulty or behavior. It is also important to remember that while there is no cure for Fetal Alcohol Spectrum Disorders - Fetal Alcohol Spectrum Disorders are 100% Preventable.

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FASD FAQs When were Fetal Alcohol Spectrum Disorders first described? The effects of drinking alcohol during pregnancy have long been noted. It wasn’t until 1973, however, that the term “Fetal Alcohol Syndrome” was first coined to describe the physical characteristics, developmental difficulties and behaviors associated with alcohol exposure during pregnancy. In 2004, the term “Fetal Alcohol Spectrum Disorders” was agreed upon by a group of national experts to be used as an umbrella term to encompass all the disorders caused by prenatal alcohol exposure. For more on the history of Fetal Alcohol Spectrum Disorders, see the “Historical Overview of Fetal Alcohol Syndrome” on page 5 of this handbook. How many people are affected by Fetal Alcohol Spectrum Disorders? For a detailed look at the incidence and prevalence of Fetal Alcohol Spectrum Disorders, see page 7 of this handbook. What is the cost of Fetal Alcohol Spectrum Disorders? When discussing the costs associated with Fetal Alcohol Spectrum Disorders (FASD), it is important to remember that no dollar amount can begin to express the costs to the individuals with Fetal Alcohol Spectrum Disorders. The costs of a disability on the life of a person and their family is immeasurable. The National Organization on Fetal Alcohol Syndrome (NOFAS) reports that “Fetal Alcohol Syndrome (FAS) alone costs the United States 5.4 billion annually in direct and indirect costs. [An] individual with full-blown FAS [can] incur an average lifetime health cost of $860,000, although costs can be as high as $4.2 million. Costs associated with FAS are just the tip of the iceberg. Individuals with FASD make up a much larger group and the total costs associated with FASD are estimated to be much higher.” Another reports the estimated “annual costs of FASD in the United states reached $4 billion by 1998” (Hoyme, et al, page 39). Do all people with a Fetal Alcohol Spectrum Disorder have mental retardation? No. While Fetal Alcohol Spectrum Disorders are the leading cause of mental retardation and the only preventable cause of mental retardation, not all people with Fetal Alcohol Spectrum Disorders have mental retardation. In fact the range of IQ for individuals with Fetal Alcohol Spectrum Disorders can range from 29 to 140. Aren’t Fetal Alcohol Spectrum Disorders only a problem for some racial or economic groups? No. Fetal Alcohol Spectrum Disorders are caused by maternal alcohol consumption during pregnancy. Fetal Alcohol Spectrum Disorders affect every segment of the population. All racial groups and economic classes are affected by Fetal Alcohol Spectrum Disorders. While studies indicate there are higher rates of Fetal Alcohol Spectrum Disorders in certain groups, 3


it is not solely the race or economics of the group that accounts for this difference. Social, economic and environmental factors all contribute to the higher rates of Fetal Alcohol Spectrum Disorders in some populations. Is there a cure for Fetal Alcohol Spectrum Disorders? No. The effects of prenatal alcohol exposure are irreversible. Individuals with a Fetal Alcohol Spectrum Disorder and their families deal with the effects of the syndrome by managing the behaviors it causes and addressing the medical implications of the syndrome. But an individual with a Fetal Alcohol Spectrum Disorder will always have the disorder, there is no cure. Is it ever safe to drink alcohol during pregnancy? No. There is no time during pregnancy when drinking alcohol is safe. In fact, it is recommended that women stop drinking when planning to become pregnant. The effects of prenatal exposure to alcohol can occur even in the earliest weeks of pregnancy, before some women know they are pregnant. Studies indicate that alcohol consumed at anytime during pregnancy can cause damage to the developing fetus. This applies both to sustained and habitual consumption of alcohol as well as occasional events of binge drinking. Can a father’s drinking cause Fetal Alcohol Spectrum Disorders? To date, there is no physical link between a father’s drinking and Fetal Alcohol Spectrum Disorders. However, a mother’s drinking behavior can be influenced by the drinking behaviors of those around her, including her partner. A partner can have a positive or negative effect on a mother’s drinking behaviors during pregnancy. A supportive nondrinking environment can be a great help to the pregnant woman. If a person with a Fetal Alcohol Spectrum Disorder has children, will their children have Fetal Alcohol Spectrum Disorders? No. Unlike some disabilities which are passed genetically from one generation to another, Fetal Alcohol Spectrum Disorders are not genetic. Fetal Alcohol Spectrum Disorders only occur when alcohol is consumed during pregnancy. Women with Fetal Alcohol Spectrum Disorders can have children without a Fetal Alcohol Spectrum Disorder if they refrain from drinking while pregnant. What are the most important pieces of information to remember about Fetal Alcohol Spectrum Disorders? Fetal Alcohol Spectrum Disorders are a wide spectrum of disabilities caused by prenatal exposure to alcohol. Fetal Alcohol Spectrum Disorders are the leading cause of mental retardation. Fetal Alcohol Spectrum Disorders are the only entirely preventable cause of mental retardation. Bibliography - See page 59.

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Historical Overview of Fetal Alcohol Spectrum Disorders The connection between prenatal maternal alcohol consumption and the subsequent difficulties encountered by children has seemingly been known throughout history. Perhaps the most frequently quoted ancient reference is in the book of Judges in the Old Testament of the Bible. One verse says, in part, “Behold, thou shalt conceive, and bear a son: and now drink no wine or strong drink” (Judges 13:7). Another of the most commonly quoted sources is the Greek Philosopher Aristotle who wrote, “Foolish, drunken and harebrained women, most often bring forth children like unto themselves, morose and languid” (Streissguth, page 35). And then there is the Carthaginian ritual that “forbade the drinking of wine by the bridal couple so that a defective child would not be conceived” (Streissguth, page 35). While these ancient references cannot indicate that history has always been sure of the connection between prenatal alcohol consumption and the subsequent developmental difficulties encountered by children, it seems likely that even in ancient times the connection was noticed. Even with these ancient references, it wasn’t until relatively modern times that the medical profession took notice of the connection between prenatal maternal alcohol consumption and developmental difficulties in children. Among the first well known historical references to the connection between prenatal maternal alcohol consumption and the development of children was during the “gin epidemic” in England during the 1700’s. During this time period the price of gin dropped dramatically and in “1714 the annual consumption was about two million gallons of gin; by 1750 consumption was up to 11 million gallons” (Abel, page 4). In 1725, the College of Physicians drafted a letter to Parliament which read in part, “the fatal effects of the frequent use of several sorts of distilled spirituous liquors upon great numbers of both sexes rendering them diseased, not fit for business, poor, a burthen to themselves and neighbors and too often the cause of weak, feeble, and distempered children [italics Abel’s].” (Abel, page 4) One of the first scientific studies on the effect of prenatal maternal alcohol consumption and its effect on children was published in 1899. In the study, Dr. William Sullivan, a Liverpool, England prison physician, compared the “pregnancy outcomes in 120 female prisoners who were alcoholics. . . . Sullivan compared these alcoholics with 28 of their blood relatives who were married to sober husbands and had also given birth to children. . . . Compared to the 44% mortality rate among the alcoholic populations, the mortality rate among children born to these nonalcoholic blood relatives was 24%. . . . [H]e also found that women who entered prison early in their pregnancies gave birth to children who were healthier than women who entered prison late in their pregnancies. Presumably this was because those who entered prison late in pregnancy had been drinking for a longer time during pregnancy.” (Abel, page 6-7) Despite historical evidence for Fetal Alcohol Spectrum Disorders, it wasn’t until modern times 5


that the connection between maternal drinking and child development began to be studied in depth by the medical profession. In 1973, Dr. David Smith and Dr. Ken Jones, pediatric dysmorphologists at Harborview Hospital in Seattle, Washington, began to study the effects of prenatal alcohol exposure. Another physician at the hospital brought to their attention “six infants with failure to thrive [who] all had alcoholic mothers. . . . [Drs. Smith and Jones] perceived an unusual pattern of physical anomalies in these children that were unlike any they were aware of. A child psychologist, Dr. Ann Streissguth, was subsequently asked to examine these children, and she diagnosed varying degrees of mental deficiencies in them.” (Abel, page 10) Drs. Smith and Jones published their initial findings in Lancet. A second Lancet article that same year finally provided the characteristics pattern of physical and mental characteristics with a name - Fetal Alcohol Syndrome (often known by it’s acronym FAS). In the following years, Fetal Alcohol Syndrome was recognized as only one part of the spectrum of disabilities resulting from prenatal alcohol exposure. This spectrum included Fetal Alcohol Effect (FAE) and Alcohol Related Birth Defects (ARBD). In the following years, many professionals working in the field replaced the terms Fetal Alcohol Effect (FAE) and Alcohol Related Birth Defects (ARBD) with terminology created by the Institute of Medicine. This terminology created five categories on the Fetal Alcohol Spectrum - Fetal Alcohol Syndrome (FAS) with confirmed maternal alcohol exposure, Fetal Alcohol Syndrome without confirmed maternal alcohol exposure, Alcohol Related Effects (ARE) which includes three categories Partial Fetal Alcohol Syndrome (PFAS), Alcohol-Related Birth Defects (ARBD) and AlcoholRelated Neurodevelopmental Disorder (ARND). In April of 2004, a group of national experts representing the Centers for Disease Control and Prevention (CDC); the National Institute on Alcohol Abuse and Alcoholism (NIAAA), the Substance Abuse and Mental Health Service Administration (SAMHSA), Health Canada and professionals in the fields of research, psychiatry and justice attended a meeting facilitated by the National Organization on Fetal Alcohol Syndrome (NOFAS). At this meeting, the descriptive term Fetal Alcohol Spectrum Disorders (FASD) was coined. Fetal Alcohol Spectrum Disorders is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral or learning disabilities with possible lifelong implications. Ancient reference, the “Gin Epidemic” and Sullivan’s Liverpool prison study show that the link between prenatal alcohol exposure and developmental delays or disabilities have long been the subject of speculation. But it is only in recent history that the disorders on the spectrum were given names much less were studied with rigorous scientific methods. Each year scientists continue to devote their time and energy to understanding the biological and psychological effects of prenatal alcohol exposure. Through their efforts, the effects of alcohol on the developing fetus are being better understood. In addition, there is a better understanding of individuals affected by Fetal Alcohol Spectrum Disorders and the difficulties they face. Bibliography - See page 59 6


Incidence and Prevalence of Fetal Alcohol Spectrum Disorders Finding statistics for Fetal Alcohol Spectrum Disorders (in particular Fetal Alcohol Syndrome) is relatively simple. Finding statistics that agree with each other is another story all together. There are several things that affect the variations in statistics for Fetal Alcohol Spectrum Disorders the type of study used to generate the statistics, the under diagnosis of Fetal Alcohol Spectrum Disorders, the lack of standard diagnostic criteria, the lack of a national registry, the stigma of identifying children as having Fetal Alcohol Spectrum Disorders, the lack of standard research, and the difference between incidence and prevalence. Incidence quantifies the new cases of Fetal Alcohol Spectrum Disorder occurring within a certain period of time (usually in the form or births). Prevalence quantifies the number of existing and new cases for a particular population during a certain period of time. There are three main ways in which Fetal Alcohol Spectrum Disorder statistics are calculated - passive surveillance systems, clinic-based studies, and active case ascertainment. In passive surveillance systems, researchers review existing records in order to look for documented or probable cases of Fetal Alcohol Spectrum Disorders. The types of records generally used are “birth certificates, special registries for children with developmental disabilities or birth defects, and/or the medical charts of hospitals and physicians.” (May and Gossage) Clinic-based studies are “generally conducted in prenatal clinics of large hospitals where researchers can collect data from mothers as they pass through the various months of their pregnancies.” (May and Gossage) Active case ascertainment focus on large areas in a particular geographic area or institution. This type of study is “unique in that they actively seek, find, and recruit children who may have FAS[D] within the population under study.” (May and Gossage) Each type of study has both advantages and disadvantages (for more on the advantages and disadvantages, see the article referenced in the bibliography on page 59). A summary using all three types of studies completed by Philip A. May, Ph.D. and J. Phillip Gossage, Ph.D. and published in 2001 provides the latest statistics. According to the May and Gossage, “FAS [Fetal Alcohol Syndrome] prevalence in the general population of the U.S. can now be estimated to be between 0.5 and 2 per 1,000 births, and the prevalence of FAS and ARBD [Alcohol Related Birth Defects] combined is likely to be at least 10 per 1,000, or 1 percent of all births.” Bibliography - See page 59. 7


Characteristics of Fetal Alcohol Spectrum Disorders The characteristics of Fetal Alcohol Spectrum Disorders fall into three categories - Growth Deficiency, Facial Characteristics and Central Nervous System Dysfunction. It is important to remember that all the characteristics below can be present in the individual to varying degrees. In individuals diagnosed with certain Fetal Alcohol Spectrum Disorder, the following characteristics may not be present. It is not necessary for all the following characteristics to be present for a diagnosis.

Growth Deficiency In Height In Weight In Both Height and Weight Prenatal or Post Natal

Facial Characteristics (Most Notable in Fetal Alcohol Syndrome) Smooth or Long Philtrum (Ridges between nose and mouth.) Short Palpebral Fissures (Eye Slits) Thin Upper Lip Minor Anomalies May Include Flat Midface Short Upturned Nose

Illustration from Fetal Alcohol Syndrome Treatment & Education Centre, Inc. website at <http://www.starflashdesign.com/fastec/ FASTECinfo.html>. 8


Central Nervous System Dysfunction Microcephaly (Small Brain Size) Tremors Seizures Hyperactivity Fine Motor Difficulties Gross Motor Difficulties Attention Deficits Learning Disabilities Mental Retardation Developmental Delays Intellectual Disabilities Fetal Alcohol Spectrum Disorders, especially where there is no confirmed history of prenatal alcohol exposure, are often diagnosed based on the complete set of characteristics present in the individual. As the person with a Fetal Alcohol Spectrum Disorder ages, the effects of the disorder can be seen in a variety of ways. The following list of characteristics seen in individuals with a Fetal Alcohol Spectrum Disorder at various developmental stages. It is important to note that not every individual will exhibit all of the characteristics at any given age.

Characteristics often seen in Newborns or Infants Difficulty Sleeping - Unpredictable Sleep/Wake Cycle Electroencephalogram (EEG) Abnormalities Failure to Thrive Feeding Difficulties including Weak Sucking Reflex Heart Defects, Kidney Problems or Skeletal Anomalies Increased Sensitivity to Light and Sound - Easily Overstimulated Neurological Dysfunctions Poor Fine Motor Control Poor Gross Motor Control Seizures, Tremors or Jitteriness Small Size Susceptibility to Infections

Characteristics often seen in Preschool Aged Children Emotional Overreaction and Tantrums Hyperactivity Lack of Impulse Control Mental Retardation Poor eye-hand and physical coordination Poor Judgment (Often see as difficulty recognizing danger including not fearing strangers. Children of this age may seem overly friendly.) Small Size Speech Delays (May include poor articulation, slow vocabulary or grammar development, or perseverative speech.) 9


Characteristics often seen in Elementary School Aged Children Attention Deficits Hyperactivity Language Difficulties (Delayed Development or Difficulties with Expressive or Receptive Language) Learning Disabilities or Cognitive Disabilities Memory Difficulties Poor Impulse Control (Often seen as lying, stealing or defiant acts.) Small Size Social Difficulties (May include over friendly, immaturity, easily influenced and difficulty with choices.)

Characteristics often seen in Adolescents and Young Adults Difficulties with Abstract Reasoning Difficulty Anticipating Consequences Low Academic Achievement Low Self-Esteem Memory Impairments More Pronounced Impulsiveness (Often seen as lying, stealing or defiant acts.) Poor Judgment School Failure Bibliography - See page 59.

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Current Diagnostic Criteria for Fetal Alcohol Spectrum Disorders In 1996, the Institute of Medicine published Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and Treatment. This book provided a diagnostic criteria for all the disorders on the Fetal Alcohol Spectrum. The diagnostic criteria was updated in 2005 with the publication of “Practical Clinic Approach to Diagnosis of Fetal Alcohol Spectrum Disorders: Clarification of the 1996 Institute of Medicine Criteria” written by a group of professionals working in the field of Fetal Alcohol Spectrum Disorders (for a detailed citation of this article, see the bibliography on pages 59-60). The following diagnostic criteria is taken from the 2005 article. Please consult the article for more detailed information.

Fetal Alcohol Syndrome (FAS) with Confirmed Maternal Alcohol Exposure (This diagnosis requires the presence of all features A-D listed below.) A. Confirmed maternal alcohol exposure B. Evidence of a characteristic pattern of minor facial anomalies, including at least two of the following 1. Short palpebral fissures (Eye slits) 2. Thin vermillion border of the upper lip 3. Smooth philtrum (Ridges between the nose and mouth) C. Evidence of prenatal and/or postnatal growth retardation 1. Height or weight ≤ 10th percentile, corrected for racial norms (if possible) D. Evidence of deficient brain growth or abnormal morphogenesis, including at least 1 of the following 1. Structural brain abnormalities 2. Head circumference ≤ 10th percentile

Fetal Alcohol Syndrome (FAS) without Confirmed Maternal Alcohol Exposure

(This diagnosis requires the presence of all features A-C listed below.) A. Evidence of a characteristic pattern of minor facial anomalies, including at least two of the following 1. Short palpebral fissures (Eye slits) 2. Thin vermillion border of the upper lip 3. Smooth philtrum (Ridges between the nose and mouth) B. Evidence of prenatal and/or postnatal growth retardation 1. Height or weight ≤ 10th percentile C. Evidence of deficient brain growth or abnormal morphogenesis, including at least 1 of the following 1. Structural brain abnormalities 2. Head circumference ≤ 10th percentile

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Partial Fetal Alcohol Syndrome (PFAS) with Confirmed Maternal Alcohol Exposure

(This diagnosis requires the presence of all features A-C listed below.) A. Confirmed maternal alcohol exposure B. Evidence of a characteristic pattern of minor facial anomalies, including at least two of the following 1. Short palpebral fissures (Eye slits) 2. Thin vermillion border of the upper lip 3. Smooth philtrum (Ridges between the nose and mouth.) C. One of the following other characteristics 1. Evidence of prenatal and/or postnatal growth retardation a. height or weight ≤ 10th percentile corrected for racial norms (if possible) 2. Evidence of deficient brain growth or abnormal morphogenesis, including at least 1 of the following a. Structural brain abnormalities b. Head circumference ≤ 10th percentile 3. Evidence of a complex pattern of behavioral or cognitive abnormalities inconsistent with developmental level that cannot be explained by genetic predisposition, family background or environment alone a. This pattern included marked impairment in the performance of complex tasks (complex problem solving, planning, judgment, abstraction, metacognition, and arithmetic tasks); higher-level receptive and expressive language deficits; and disordered behavior (difficulties in personal manner, emotional liability, motor dysfunction, poor academic performance, and deficient social interaction)

Partial Fetal Alcohol Syndrome (PFAS) without Confirmed Maternal Alcohol Exposure (This diagnosis requires the presence of all features A-C listed below.) A. Evidence of a characteristic pattern of minor facial anomalies, including at least two of the following 1. Short palpebral fissures (Eye slits) 2. Thin vermillion border of the upper lip 3. Smooth philtrum (Ridges between the nose and mouth.) B. One of the following other characteristics 1. Evidence of prenatal and/or postnatal growth retardation a. height or weight ≤ 10th percentile corrected for racial norms (if possible) 2. Evidence of deficient brain growth or abnormal morphogenesis, including at least 1 of the following a. Structural brain abnormalities b. Head circumference ≤ 10th percentile 3. Evidence of a complex pattern of behavioral or cognitive abnormalities inconsistent with developmental level that cannot be explained by genetic predisposition, family background or environment alone 12


a. This pattern includes marked impairment in the performance of complex tasks (complex problem solving, planning, judgment, abstraction, metacognition, and arithmetic tasks); higher-level receptive and expressive language deficits; and disordered behavior (difficulties in personal manner, emotional lability, motor dysfunction, poor academic performance, and deficient social interaction)

Alcohol Related Birth Defects (ARBD) (This diagnosis requires features A-C listed below.) A. Confirmed maternal alcohol exposure B. Evidence of a characteristic pattern of minor facial anomalies, including at least two of the following 1. Short palpebral fissures (Eye slits) 2. Thin vermillion border of the upper lip 3. Smooth philtrum (Ridges between the nose and mouth.) C. Congenital structural defects in at least one of the following categories, including malformations and dysplasias (if the patient displays minor anomalies, at least two must be present): 1. cardiac: atrial septal defects, aberrant great vessels, ventricular septal defects, conotruncal hearth defects; skeletal: radioulnar synostosis, vertebral segmentation defects, large joint contractures, scoliosis; renal: aplastic/ hypoplastic/dysplastic kidneys, “horseshow: kidneys/ureteral duplications; eye: strabismus, ptosis, retinal vascular anomalies, optic nerve hypoplasia; ears: conductive hearing losss, neurosensory hearing loss; minor abnormalities: hypoplastic nails, short fifth digits, clinodactyly of fifth fingers, pectus carinatum/excavatum, camptodactyly, “hockey stick” palmar creases, refractive errors, “railroad track” ears

Alcohol Related Neruodevelopmental Disorders (ARND)

(This diagnosis requires both A and B listed below.) A. Confirmed maternal alcohol exposure B. At least 1 of the following 1. Evidence of deficient brain growth or abnormal morphogenesis, including at least on of the following a. Structural brain abnormalities b. Head circumference ≤ 10th percentile 2. Evidence of a complex pattern of behavioral or cognitive abnormalities inconsistent with developmental level that cannot be explained by genetic predisposition, family background or environment alone a. This pattern includes marked impairment in the performance of complex tasks (complex problem solving, planning, judgment, abstraction, metacognition, and arithmetic tasks); higher-level receptive and expressive language deficits; and disordered behavior (difficulties in personal manner, emotional lability, motor dysfunction, poor academic performance, and deficient social interaction) 13


Primary Disabilities in Fetal Alcohol Spectrum Disorders Most of the primary disabilities associated with Fetal Alcohol Spectrum Disorders can be related to damage to the brain during the development of the fetus. Alcohol’s affect on the developing brain is an area in which extensive research is being conducted. Alcohol is a tertogenic drug. According to the Oxford English Dictionary, a teratogen is “an agent or factor which causes malformation of the developing embryo.” Alcohol can affect the embryo as well as the fetus. It is important that women abstain from drinking not only when they know they are pregnant, but also when they are planning to become pregnant since alcohol can damage the embryo even before a woman knows she is pregnant. How exactly does alcohol affect brain development? Ann Streissguth, Ph.D. a leader in the study of Fetal Alcohol Spectrum Disorders, points to two different ways, one affecting the structure of the brain and the other affecting the function of the brain. “[E]xposure to prenatal alcohol can disrupt the normal proliferation and migration of brain cells, which produces structural deviations in brain development. . . . Prenatal alcohol exposure can also disrupt the electrophysiology and neurochemical balance of the brain, so that messages are not transmitted as efficiently or as accurately as they should be.” (page 96) Researchers have traditionally used autopsies and Magnetic Resonance Imaging (MRI) to study the damage caused to the structure of the brain. To study the function of the brain, researchers use electroencephalograms (EEGs) and Positron Emission Tomography (PET). Recent technological advances have allowed researchers to study the brain as a whole through the use of functional MRIs and brain mapping (Riley, et al.) Given the vast variety of characteristics exhibited by individuals with a Fetal Alcohol Spectrum Disorder, it stands to reason that the effect of prenatal alcohol exposure on brain development can be influenced by several different variables. Streissguth discusses these variables, as seen in animal research, in her book Fetal Alcohol Syndrome: A Guide for Families and Communities. “Dose, timing and pattern of exposure modify the prenatal effects of alcohol. . . . Not only are children of mothers who are chronic alcoholics at risk. . . . Women who drink before they know they are pregnant or have an occasional heavy dose of alcohol (binge) may also cause damage to their children. Individual differences in the mother and child modify the effect of prenatal exposure in the individual. . . in terms of both the severity and the type of offspring effect. . . . The fact that some offspring appear unaffected by prenatal alcohol at any point in time does not mean that alcohol is not tertogenic or that an individual who is free of alcohol-caused disabilities at one age will necessarily be free of them at another. 14


Brain-behavior relationships have been well established in animal studies. . . . Many of the puzzling and bizarre behaviors that people with FAS [Fetal alcohol Syndrome] engage in may be caused by their brain damage. This has major social implications for their daily living and their social interactions. The effects of prenatal exposure last into adulthood. . . . Aberrant behaviors in children, adolescents, and adults can be caused by prenatal damage.” (Pages 66-67) The four regions of the brain most frequently referred to when discussing the effects of prenatal alcohol exposure are the basal ganglia, cerebellum, corpus callosum, and hippocampus. Neuroimaging studies show that all four of these brain regions are decreased in size in the brains of individuals who were exposed to alcohol prenatally. In the worst cases, the corpus callosum may be absent. The impact of this damage to the brain is most readily seen by the various functions that each of these regions controls. It follows that damage to each of these regions would adversely affect the function for which each is responsible. According to Riley, et al., “The basil ganglia are involved in voluntary limb movement, eye movement, and cognition. The caudate [a part of the basal ganglia] . . . appears to be involved in cognition, particularly with executive functions, such as problem solving, concept formation, and working memories.” (page 37). The cerebellum is “thought to be involved primarily in movement but also in cognitive processes, such as attention.” (Prenatal Exposure to Alcohol, page 33) Damage to the cerebellum has also “been implicated in learning deficits as well as in balance and coordination.” (Mattson, page 189) The corpus callosum connects the two halves of the brain and allows them to communicate. Damage to the corpus callosum has “been linked to deficits in attention, intellectual functioning, reading, learning, verbal memory, and executive and psychosocial functioning.” (Mattson, page 188) The hippocampus is involved in the function of memory. “Although the precise function of the hippocampus in specific aspects of memory is controversial, it probably plays a role in the consolidation of memory.” (Mattson, page 189) When any of these regions - the basal ganglia, cerebellum, corpus callosum or hippocampus - is damaged by prenatal exposure to alcohol it can have devastating effects. Each unique area of the brain, by itself and in connection with the rest of the brain, controls some functions. The greater the damage to the brain, the greater the consequences. It is important to remember that brain damage caused by prenatal alcohol exposure can be present even in the absence of the classic facial features of Fetal Alcohol Spectrum Disorders. Bibliography - See page 60. 15


Executive Skills Executive skills are those skills which are controlled by the frontal lobes of the brain. They are high level cognitive functions which allow individuals to organize their behavior through planning and organizing, sustaining attention, persisting to complete a task, managing emotions, and monitoring thoughts to work more efficiently. Executive skills have been defined as the directive capacities of the mind which cue the use of other mental abilities. In broad terms, executive skills help individuals regulate their behavior. Individuals with an FASD often exhibit executive dysfunction, indicating possible damage to that area of the brain due to prenatal alcohol exposure. The following chart identifies several executive skills, provides a description of the skills, and list possible signs or symptoms of a dysfunction with each skill.

Executive Skill

Possible Signs or Symptoms of Dysfunction

Description

Planning and Sequencing

The ability to develop steps to reach a goal or complete a task, identify materials needed, and set a completion dat. The ability to arrange steps in the proper order.

May start project without necessary materials. May not leave enough time to complete the project. May not make plans for the weekend with peers. May skip steps while completing a multi-step task. May have difficulty relating stories chronologically. May â&#x20AC;&#x153;jump the gunâ&#x20AC;? socially.

Organizing

The ability to obtain and maintain necessary materials and aids to completing sequence and achieving goals.

May lose important papers or possessions. May fail to turn in completed work. May create an unrealistic schedule.

Time The ability to estimate how much Management and time one has, how to allocate the Prioritizing time, and how to stay within timelines and deadlines. The ability to establish ranking of needs or tasks.

May waste time doing small projects and fail to do big projects. May have difficulty identifying what material to record when taking notes.

Flexibility

May get stuck on one approach. May not know how to access appropriate resources. May become easily frustrated and exhibit temper tantrums.

The ability to revise plans in view of mistakes. The ability to adapt to changing conditions

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Executive Skill

Possible Signs or Symptoms of Dysfunction

Description

Working Memory

The ability to hold information in your mind while performing complex tasks. The ability to draw on past learning or experience to apply to the situation at hand or to project problem solving strategies into the future.

May not follow directions. May not write down, complete or hand in assignments or bring appropriate materials. May forget the process for assignments (long division, proper headings, etc.). May not remember to perform responsibilities. May lose things.

Metacognition

The ability to take a â&#x20AC;&#x153;birdâ&#x20AC;&#x2122;s eye viewâ&#x20AC;? of oneself in a situation. The ability to observe or think about how to solve a problem. These are self-monitoring and self-evaluation skills.

May not understand directions. May make careless mistakes or fail to check work. May fail to check assignment to make sure directions were followed. May fail to recognize there is a problem and fail to ask for help. May fail to evaluate their own performance. May fail to see how their behavior affects the group, the situation or themselves.

Inhibiting

The ability to stop oneself from responding to distracters and think before acting. The ability to resist the urge to say or do something. The ability to delay gratification in service of more important, longterm goals.

May appear distractible and/or impulsive. May pick smaller, immediate reward over larger delayed reward.

Self-Regulating Affect

The ability to manage emotions to achieve goals. The ability to control or direct behavior.

May exhibit inappropriate or over-reactive response to situations.

Initiating

The ability to begin a task without undue procrastination and in a timely fashion.

May have difficulty getting started on tasks which may appear as oppositional behavior.

Goal Directed Persistence

The ability to reach self-set or other -set goals and to not be put off by distractions or competing interests

May start tasks but not finish them.

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Secondary Disabilities in Fetal Alcohol Spectrum Disorders Primary disabilities, when referring to Fetal Alcohol Spectrum Disorders, are those caused by brain damage both structural and functional (see Primary Disabilities in Fetal Alcohol Spectrum Disorders on page 14 of this handbook). Secondary disabilities “are disabilities that an individual is not born with, but may be acquired as a result of the CNS [Central Nervous System] deficits” associated with Fetal Alcohol Spectrum Disorders. (National Center on Birth Defects and Developmental Disabilities) Not every individual with a Fetal Alcohol Spectrum Disorder exhibits secondary disabilities. In fact, “higher rates of secondary disabilities were observed for people who had FAE [Fetal Alcohol Effect now known as Partial Fetal Alcohol Syndrome] rather than FAS [Fetal Alcohol Syndrome]. . . . and an IQ score above rather than below 70.” (Streissguth, page 111) It is important to note that not all individuals diagnosed with a Fetal Alcohol Spectrum Disorder will be affected by all the secondary disabilities included in this article. The most commonly seen secondary disabilities are mental health problems, disrupted school experience, alcohol or drug use, legal problems, confinement, inappropriate sexual behavior, and dependent living.

Mental Health Problems Anxiety Disorders Attachment Disorder Attention Deficit Disorder (ADD) Attention Deficit Hyperactivity Disorder (ADHD) Conduct Disorder Depression Eating Disorders Hallucinations Oppositional Defiance Disorder Psychotic Episodes Suicide Threats/Attempts “More than 90% of the individuals in our [Streissguth, Barr, et al., 1996] study had mental health problems, and more than 80% had had treatment for mental health problems. There was no difference in the prevalence of mental health problems for children versus adolescents and adults.” (Streissguth, page 109)

Disrupted Schooling Dropping Out Expulsions Suspensions Behaviors which may lead to the above school disruptions. Being Repeatedly Disruptive in Class 18


Disobedience Disrespect Toward Teachers Learning Difficulties Not Getting Along with Peers Truancy “More than 60% of the adolescents and adults [in the Streissguth, Barr, et al. 1996 study] had a disrupted school experience and, surprisingly, so had 14% of the children. Suspensions were the most frequent disrupted school experience among individuals of all ages.” (Streissguth, page 109)

Alcohol or Drug Use

“Problems with alcohol and other drugs were reported for 35% of adolescents and adults [in the Streissguth, Barr, et al. 1996 study] but were not reported as a problem for children.” (Streissguth, page 109)

Legal Problems Assault Child Molestations Crimes against Persons Crimes against Property Domestic Violence Running Away Shoplifting Theft “Sixty percent of the adolescents and adults [in the Streissguth, Bart, et al. 1996 study] and even 14% of the children had trouble with the law. . . . Individuals who didn't have disrupted school experiences were only 40% as likely to be in trouble with the law.” (Streissguth, page 109)

Confinement Incarceration (Jail) In-Patient Alcohol Treatment In-Patient Drug Treatment In-Patient Mental Health Treatment “Fifty percent of the adolescents and adults [in the Streissguth, Barr, et al. 1996 study] but less than 10% of the children had been confined. Adolescents and adults were more likely to have been incarcerated (32% and 42%, respectively) than to have been in either inpatient mental health programs (20%-28%) or inpatient alcohol and other drug treatment programs (12%-20%).” (Streissguth, page 109)

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Inappropriate Sexual Behavior Compulsions Inappropriate Sexual Advances Inappropriate Sexual Touching Obscene Telephone Calls Promiscuity Voyeurism “Forty-nine percent of the adolescents and adults [in the Streissguth, Barr, et al. 1996 study] and 39% of children had displayed inappropriate sexual behavior.” (Streissguth, page 110) Poor judgment, lack of impulse control and difficulty learning from experience can contribute to inappropriate sexual behavior.

Dependent Living

The term dependent living could be used to characterize “about 80% of the sample [in the Streissguth, Barr, et al. 1996 study] (21 and over).” (Streissguth and Kanter, page 34) “The majority of FAS [Fetal Alcohol Syndrome] adults may always need to live in a supervised setting. Group homes for FAS affected adults can be a nurturing and supportive environment, providing a degree of independence within a safe haven (Alcohol Related Birth Injury (FAS/FAE) Resource Site).”

Problems with Employment Difficulty Getting a Job Difficulty Holding a Job Being Fired Losing a Job Without Explanation The term “problems with employment” could be used to characterize “about 80% of the sample [in the Streissguth, Barr, et al. 1996 study] (21 and over). Only seven of the 90 adults in this sample live independently and without employment problems” (Streissguth and Kanter, page 34). None of these secondary disabilities exists in a vacuum. Legal problems can stem from alcohol and drug use. Disrupted school experiences can result from learning disabilities and impulse control. While it may seem that secondary disabilities would be difficult to prevent, there are several so-called “protective factors” which are associated with lower rates of secondary disabilities in individuals with a Fetal Alcohol Spectrum Disorder. The protective factors are early diagnosis; receiving special education and/or social services; a stable, nurturing home environment; and an absence of violence. (The following text speaks specifically to Fetal Alcohol Syndrome (FAS) but these protective factors are equally important in all Fetal Alcohol Spectrum Disorders (FASD).)

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Protective Factors Early Diagnosis

“Children with FAS (Fetal Alcohol Syndrome) who are identified early have an improved prognosis. A child who is identified early in life can be placed in appropriate educational classes and given access to social services that can help the child and his or her family. In addition, early diagnosis helps families and school personnel understand why the child might act or react differently from other children in some situations.” (National Center on Birth Defects and Developmental Disabilities)

Involvement in Special Education and Social Services

“Children who receive special education geared towards their specific needs and learning style are more likely to achieve their developmental and educational potential. Children with FAS show a wide range of behaviors and severity of symptoms. Special education allows for individualized educational programs. In addition, families of children with FAS who receive social services, such as respite care or stress and behavioral management training, have more positive outcomes than families who do not receive such services.” (National Center on Birth Defects and Developmental Disabilities)

Loving, Nurturing and Stable Caretaking Environment

“While all children benefit from a loving and stable home life, children with FAS can be particularly sensitive to disruptions, transient lifestyles, or harmful relationships compared to children who do not have FAS. Community and family support are needed to prevent secondary conditions in individuals with FAS.” (National Center on Birth Defects and Developmental Disabilities)

Absence of Violence

“Individuals with FAS who live in stable or non-abuse households or who do not become involved in youth violence are much less likely to develop secondary conditions than children who have been exposed to violence in their lives. Children with FAS need to learn and be taught other ways of showing their anger or frustration.” (National Center on Birth Defects and Developmental Disabilities) Secondary disabilities can be difficult for individuals with Fetal Alcohol Spectrum Disorders and their families. However, the protective factors can help to eliminate or lessen this set of secondary disabilities. Bibliography - See page 60.

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Prevention Given that Fetal Alcohol Spectrum Disorders are 100% preventable, it may seem a given that prevention would figure in any discussion of not only Fetal Alcohol Spectrum Disorders but also of women’s health issues. However, it is sometimes a fine line that researchers studying Fetal Alcohol Spectrum Disorders, physicians treating women, and public health officials must walk. Alcohol is a legal drug and anyone, including women, who are legally of age are allowed to use alcohol. “The use and abuse of alcohol have long been centered in emotional and moral debate. Women who use alcohol or other substances are particularly stigmatized” (Institute of Medicine, page 112). For this reason, it is helpful to establish a model of prevention that focuses not only on the woman who is or may become pregnant, but also on her spouse or significant other, her physician, her community, and her society. Ann Streissguth, Ph.D., a noted researcher in the area of Fetal Alcohol Spectrum Disorders, has developed what she terms the “Five P’s of Prevention.” 1. Public Education 4. Programs and Services 2. Professional Training 5. Parent and Citizen Activism 3. Public Policy Stresissguth’s “Five P’s of Prevention” work together to affect not only women who are or may become pregnant but also the society around them. (Sreissguth, page 250) 1. Public Education is focused on educating the public at large about the dangers of drinking during and even before pregnancy. Public education can take many forms. Posters, lectures, brochures and media coverage are all forms of public education. 2. Professional Training is focused on teaching healthcare and social service professionals about Fetal Alcohol Spectrum Disorders. But beyond that, teaching them how to discuss with women the effects drinking can have on a fetus. Professionals should be given concrete suggestions for introducing the topic of drinking during pregnancy and they should be familiarized with ways to help women stop drinking. 3. Public Policy refers to the way government on every level deals with the issue of drinking during pregnancy. Public policy is seen in the United States Surgeon General’s warning urging women to stop drinking while they are planning to become pregnant. It is also seen in the laws in some states requiring individuals to report to the state women they know to be drinking during pregnancy. 4. Programs and Services refers to programs which intervene - even briefly - with women who are drinking during pregnancy and services which support the women during and after their pregnancy. 5. Parent and Citizen Activism is simply what its name says. Parents and citizens taking an active role in the prevention of Fetal Alcohol Spectrum Disorders. Ann Stresissguth’s “Five P’s of Prevention” is only one of several popular models of prevention. No matter which model of prevention is used. It is important to remember that Fetal Alcohol Spectrum Disorders are 100% preventable. Bibliography - See page 60.

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Strategies for the Home The following strategies may be helpful to parents, guardians or caregivers of individuals with a Fetal Alcohol Spectrum Disorder. It is important to note that each individual with a Fetal Alcohol Spectrum Disorder is unique. The strategies listed here may not work for everyone. It is important to remember that it is not what the individual with a Fetal Alcohol Spectrum Disorder “won’t” do, but rather what they “can’t” do as a result of damage to the brain caused by prenatal exposure to alcohol. (See “Primary Disabilities in Fetal Alcohol Spectrum Disorders” on page 14 of this handbook to learn more.) There are many overlapping behavioral characteristics and related mental health diagnoses which is why a differential diagnosis is important. Consider chronological age (calendar age) versus developmental age (the age equivalent to the individual’s developmental stage) when choosing everyday activities and strategies. When creating strategies it is important to Use teachable moments rather than punishment. REMAIN CALM. Look at the individual’s unusual behavior and find the individual’s “logic” behind the behavior. Utilize the “Eight Magic Keys” which are strategies that can be effective in helping an individual with a Fetal Alcohol Spectrum Disorder. The “Eight Magic Keys” are listed below. Concrete Consistency Repetition Routine Simplicity Specific Structure Supervision No matter what discipline method you choose, stick with it and be consistent.

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To have/create effective strategies it is important to focus on behaviors caused by brain dysfunction. The following list includes behaviors that result from brain dysfunction followed by possible strategies. Hyperactivity and Attention Deficits Take a break, exercise and encourage movement, or talk with the individualâ&#x20AC;&#x2122;s doctor about medications that may be appropriate. Impulsivity SAFE (Stay Away from Emergencies) role-play with the individual that when they are out of routine to check-in with a designated person to find out what to do. Literal Thinking and Poor Social Skills Teach routines or create a book of commonly misunderstood phrases to help the individual work on issues with literal thinking. Difficulty Making Transition Provide redirection, warnings, and let the individual feel like they are involved in decision making activities. Poor or Distorted Memory Establish routines, teach organizational skills, and have the individual checkin with a friend to compare memories. Keep routines simple and instructions short. Give advance warning to the individual before changing tasks. Focus on daily living skills. Praise positive behavior. Set limits and stick to them. Be patient. Repeat, repeat, repeat. Concentrate on strengths and talents. Beneficial Tools for Parents, Guardians and Caregivers Have a support network of family, friends and professionals. Be informed and share information with others in the individualâ&#x20AC;&#x2122;s life. Take care of your own health. Find humor in everyday life. Strategies That May Make Mealtime Easier Never give or withhold food as a reward or punishment. Have meals at the same time every day, even on weekends. 24


Use simple rules at mealtimes (for example - “eyes on your food” or “eat with your fork”) Avoid long mealtimes as this can be distracting. Seat the individual with a Fetal Alcohol Spectrum Disorder next to the most tolerant individual. Assign the individual a specific seat and never change it. If the individual has difficulty sitting for a long time, let them stand at the table. Serve premeasured portions of food to the individual if they tend to overeat. Individuals with a Fetal Alcohol Spectrum Disorder may chew and chew without swallowing, remind the individual of the need to swallow.

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Introduction to Educational Techniques The following pages of this handbook contain articles describing educational techniques that may be helpful to teachers, parents, guardians, and caregivers of individuals with a Fetal Alcohol Spectrum Disorder. The articles are Educational Techniques for Preschool Students, Educational Techniques for Elementary School Students, and Educational Techniques for Junior and Senior High School Students. As was noted in “Secondary Disabilities in Fetal Alcohol Spectrum Disorders” article on page 18, disrupted schooling is one of the most common secondary disabilities encountered by individuals with a Fetal Alcohol Spectrum Disorder. “Secondary Disabilities in Fetal Alcohol Spectrum Disorders” discussed the behaviors which may lead to school disruption. However, there may also be underlying causes for the behaviors that lead to school disruption as well as other contributing factors. Some of the possible contributing factors to school disruption may include the following primary disabilities caused by brain anomalies. Arithmetic Disabilities Attention deficits Delayed Reaction Time - Students with a Fetal Alcohol Spectrum Disorder may process information slower and less efficiently than their peers. Difficulties with Abstraction - Often seen as a difficulty understanding consequences. Difficulties Transitioning Between Activities Difficulties with Verbal Learning - Students with a Fetal Alcohol Spectrum Disorder may learn fewer words. Difficulties with Visual-Spatial Learning - Students with a Fetal Alcohol Spectrum Disorder often have difficulty replacing objects in their original position. Disorientation in Time and Space - Often seen as a difficulty perceiving social cues. Impulsivity - Often seen as poor frustration tolerance. Memory Impairments Difficulties Generalizing The following lists some of the focus areas teachers and caregivers might consider when discussing the education of a student with a Fetal Alcohol Spectrum Disorder. Also listed below are some basic recommendations for each of the areas. Environment - Keep the environment free of distractions and as organized as possible. Transitional Periods - Establish and use clearly defined cues to begin and end the transition period between activities. Organizational Skills - Keep tasks short. Use brief, concrete directions. Increasing Attention - Use eye contact and touch when giving directions. Have the student repeat the directions. 26


Controlling Impulsivity - Model and rehearse social skills. Require the student to wait for an established signal before beginning a task. Discipline - Ignore negative behavior whenever possible. Use brief, immediate consequences when necessary. Overstimulated - Have a respite plan for when the student is overwhelmed. Memory - Teach memory strategies and repeat information continuously. Hyperactivity - Provide opportunities for frequent breaks and movement activities. The articles on pages 28-45 of this handbook will provide further information on strategies for helping students with Fetal Alcohol Spectrum Disorders. While every student with a Fetal Alcohol Spectrum Disorder will not encounter every problem discussed in these articles, most will experience at least some difficulties with school and/or learning. Not every student with a Fetal Alcohol Spectrum Disorder will respond to every technique included in the following articles, but the suggestions provided here may help the teacher or caregiver to better help the student learn and succeed in school. Five words to remember when teaching a student with a Fetal Alcohol Spectrum Disorder Structure, Consistency, Brevity, Variety, and Persistence. The information in this article and the articles “Educational Techniques for Preschool Students,” “Educational Techniques for Elementary School Students,” and “Educational Techniques for Junior and Senior High School Students” which follow on the next page of this handbook has been compiled over a number of years by staff of the Center for Disabilities working in the field of Fetal Alcohol Spectrum Disorders.

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Educational Techniques for Preschool Students Alphabet Make letters with paper and glue objects whose names begin with that letter to the paper letter. Match letters. Match words. Use the sounds of letters repeatedly. For example - “J,” juice, jump, jacket, etc. The teacher cuts the letter out of sandpaper and has the child trace the sandpaper letter with his/her finger. The teacher writes a letter on the blackboard and has the student trace the letter. The teacher makes dots on a paper in the shape of the letter and has the student connect the dots to make the letter. The teacher can gradually decrease the number of dots used to make the letter. Make letters out of jiggler jello. When a student is learning to write his/her name, it may be easier for the student to use all capital letters at the beginning. Teach sign language to designate each letter of the alphabet.

Environment Students with a Fetal Alcohol Spectrum Disorder usually need more one-on-one teaching. Increased staff should be considered. Calm and Quiet Soft music may be calming. Tone down classroom so rooms are not overly stimulating. Keep a minimal number of objects hanging from the ceiling and on the walls. Use calm colors of paint on the walls. Reduce clutter. Well-defined areas across environments. Structure Same rules are enforced the same way. Transition from One Activity to Another Tell the student what they will be doing. For example - “We’ll finish painting, then we’ll eat a snack.” The teacher may need to give the student an object needed for the next activity so the child has an easier time making the transition. For example - give the student his/her lunchbox when it is time to eat lunch. The student could be allowed to carry the book to story time or carry the puppet to the puppet theater. Teach transition routines. Use visual timers to show when the transition will occur. For example - egg timer, kitchen timer or clock. Use a transition buddy when moving from room to room. 28


Evaluations The following evaluations may be helpful in learning more about the student’s development and assist in planning the teachers activities. Speech and Language Psychological Motor Adaptive Behavior Occupational Therapy Physical Therapy Academic

Eye-Hand Coordination Activities Use puzzles with knobs on the pieces. Lace Cards The teacher may need to make a larger lace card from cardboard. The lace for the lace card may need masking tape on the end to make it easier for the child to lace the card. Have the student squeeze clothes pins open and closed. The teacher may need to show the student how to do the activity, then guide the child through the activity, and finally encourage the student to do the activity on his/her own. The teacher could pick up the puzzle piece for the student to put in the right place in the puzzle. The teacher could lace the first two holes of a lacing card. Have the student put pegs in a peg board. Have the student pound pegs into a peg board.

Language Development Students who are not yet talking. Begin with simple story books. The teacher can touch an object and name the object for the table. For example The teacher touches a table and says to the student “table.” Use real objects the student can see and touch when naming objects. Students who are using single words. If the student says “drink,” say to the student “more drink.” This stimulates the student to use more vocabulary. Expand the student’s vocabulary slowly. When the student starts using two words, start encouraging the student to use three words. If the student says “more drink,” say to the student “want more drink.” Talk to the student at their level. Use short sentences. Avoid using long sentences. Students with poor articulation. A speech therapist could be a good resources for both the student and the teacher. The teacher needs to use proper pronunciation. A good role model is important. Go around the classroom, touch objects and name the object. Have the student do the same thing. 29


At mealtime, have the student say what he/she wants rather than just giving the student what you think they want. Music activities can help children learn vocabulary. Good morning songs. Song before eating. Name songs. Circle game songs - sit down, stand up, name games. Use sign language. Sign language may be helpful to teach students even when they do not have a hearing loss. Sign language is concrete and visible and can be used along with verbal language.

Managing Hyperactivity Keep the environment structured. Make a picture calendar. Make a board with hooks. Laminate pictures of activities for the whole day. For example - have a picture of a student taking off their jacket. Have a picture of a student putting a puzzle together. Have a picture of a student playing on the playground. As the student completes each activity during the day, the student would turn the picture over. The student knows that he/she has completed an activity when the picture has been turned over. Limit the student’s choices to 2 or 3 toys. Give the student plenty of time to make a choice. If the student seems to be having difficulty making a choice, watch the student to see if he/she looks longer at a particular toy or make a movement toward a certain toy. Place each activity in two baskets. Have two baskets for a puzzle, two baskets for a matching activity, two baskets for lacing cards, etc. Having one activity in a set of baskets will help keep the student’s attention on the activity for a longer period of time. Take the activity out of the “start” basket and when the student has finished the activity, the student puts the activity into the “finish” basket. Keep activities in a designated place. The student will know where to return the activity when he/she is finished with the activity. Students who are hyperactive should sit on a chair rather than the floor. The chair keeps the child from leaning backward, forward and sideways. The chair helps keep the child in a specific space. The teacher may need to show the child how to sit in the chair. Feet flat on the floor. Hands on the side. 30


Sitting up straight. Have an activity ready at the table for when the student is sitting properly. A student with hyperactivity may not sit at the table very long waiting for an activity to be brought to them. Structure the day alternating quiet time, active time, quiet time, etc. If the student does not need sleep at nap time, the student may benefit from having active activities like riding a tricycle in the hall.

Managing Behavior Tantrums. Take the student to a different room. Lullaby music playing in the room may help calm the student. Hold the student. The teacher’s body language should not get the student excited. Talk in a calm voice, walk slowly. If the teacher is relaxed, this will help the child relax. Determine what happed before the tantrum occurred. Look for antecedents to the behavior. Antecedents are the events/things that happen which help the student lose his/her temper. Another way of reducing the likelihood of the child having a tantrum is to teach the student new ways of dealing with his/her stress. For example - teach the student to say “I’m mad.” The student’s diet could be a contributing factor for the behavior. Observe the child for any health problems. For example - a student may pull at his/her ears when they have an earache. Ask the student to “show me where you hurt.” Ignore negative behavior whenever possible. Avoid overreacting to negative behavior. Build a positive reinforcement system. As the student finishes each activity on the picture calendar, hug the child. When the student does a good job on a project, let the student know he/she will receive a positive reinforcement such as a hug.

Math Memorized counting from one to ten does not mean that the student understands what the numbers mean. Teach the student what the number “one” means before any more numbers are taught to the student. Ask the student to hand you one crayon or draw one circle. Cut the numbers out of paper, glue oatmeal, rice, glitter, etc. to the number. The child can then see, hear and feel the number. Touch and count objects.

Concrete Teaching Methods Use as much sensory stimulation as possible to teach each concept. 31


For example - teaching the color “orange.” Wear orange clothes. Have the student paint with orange paint. Use orange construction paper for projects. Serve oranges for a snack. Use objects as much as possible to teach concepts. For example - teaching about “circles.” Use a cookie cutter to cut circle sandwiches. Cut circles from construction paper and glue on round cereal or circles of paper. Teaching activities must be “concrete.” For example - teaching a student to stay in a specified area of the yard. Use 4 large orange cones to designate an area. Tell the student to stay inside the 4 cones. When the student has learned to stay inside the cones, gradually expand the area the student is allowed to play in. For example - the question “what do you want?” This question is very abstract. Give the student choices he/she can see, feel, touch or hear.

Short Attention Span Determine how long the student usually works on an activity. Ask the student to do “one more.” For example - if the student is drawing circles and the student stops, ask the student to draw “one more” circle. The teacher should never make the student do more something more than once after they have said “one more.” This approach should increase the student’s attention span over time.

Social Behavior Show the student how to share toys. Use a timer to share the most popular toys. Teach the student how to be a friend. Teach the student how to sit with a friend at the table. Pair students for a week so the student with a Fetal Alcohol Spectrum Disorder can work/play with a variety of students. Teach the student how to join a group.

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Educational Techniques for Elementary School Students Environment Students with a Fetal Alcohol Spectrum Disorder usually need more one-on-one teaching. Increased staff should be a considered. Calm and quiet. Soft music may relax the environment during break. Tone down classroom so rooms are not overly stimulating. Keep a minimal number of objects hanging from the ceiling and on the walls. Use calm colors of paint on the walls. Reduce classroom clutter. Use bulletin boards as teaching tools, use soft colors. (Bulletin boards could be covered if they are not in use.) Structure Establish a few simple rules. Same rules are enforced the same way. Use the same language when enforcing the rules. Transition from One Activity to Another Give the student reminders for ending and beginning activities. Use tactile signals. For example - touch the student’s shoulder or elbow and say “the bell will ring in five minutes, you need to finish up” or “we will go to lunch when the bell rings.” Use music to signal that a transition is coming up. Begin by playing music for five minutes before the transition. Then gradually decrease the length of time the music is played. When the music stops, the student knows it is time to transition to the next activity. It is important for the student to have a fairly consistent routine that is followed every day. Provide notebooks for the students which have all their classroom activities in order for the day. This gives the student a concrete item with which to structure his/her day. If possible, class periods should not exceed 20 minutes. The student could be allowed to carry the book to the reading area or the puppet to the puppet theater. Students with a Fetal Alcohol Spectrum Disorder may need several breaks during the day. Students may need sleep during the day. Students may need to get up and move around more frequently than other students. Plan activities to facilitate movement and creativity between seat work assignments. 33


Evaluations

Students with a Fetal Alcohol Spectrum Disorder may need food snacks during the day.

The following evaluations may be helpful in learning more about the student’s development and assist in planning the teacher’s activities. Speech and Language Psychological Motor Adaptive Behavior Occupational Therapy Physical Therapy Functional Assessment

Eye-Hand Coordination Use puzzles with knobs on the pieces. Lace Cards The teacher may need to make a larger lace card from cardboard. The lace for the lace card may need masking tape on the end to make it easier for the child to lace the card. Let the student help with tasks that require sorting, stapling, putting things in place, etc. The teacher may need to show the student how to do the activity, then guide the child through the activity, and finally encourage the student to do the activity on his/her own. The teacher could pick up the puzzle piece for the student to put in the right place in the puzzle. The teacher could lace the first two holes of a lacing card.

Language Development Talk with the student at the student’s level. Use short sentences. Avoid using long sentences. Students with Poor Articulation A speech therapist would be a good resource for the student and the teacher. The teacher should use proper pronunciation. A good role model is important. Articulation errors are common, accept the student’s communications without correcting them. The repeat their sounds correctly. Music activities help children learn vocabulary. Good morning songs. Song before eating. Name songs. Circle game songs - sit down, stand up, name games. Quantity versus Quality of Speech Students with a Fetal Alcohol Spectrum Disorder often use a large quantity of speech. Be aware that quantity does not indicate quality. Listen for the number of words per sentence. Listen for the number of new words that the student uses. 34


Stress concept development through concrete examples encouraging the student to demonstrate understanding. For example - When discussing temperature, the student should know what to wear on a hot day as opposed to what to wear on a cold day. Sign Language Sign language may be helpful to teach children with Fetal Alcohol Spectrum Disorders even when they do not have a hearing loss. Sign language is concrete and visible which can be used along with verbal language.

Managing Hyperactivity Keep the environment structured. Have as few rules as possible and enforce rules consistently. Never make a rule you do not plan to enforce. Avoid threats. Make the rules specific. For example - “no hitting,” “no kicking,” or “raise your hand and wait to be called on.” Make a picture calendar. Make a board with hooks. Laminate pictures of activities for the whole day. For example - have a picture of a student taking off their jacket. Have a picture of a student putting a puzzle together. Have a picture of a student playing on the playground. As the student completes each activity during the day, the student would turn the picture over. The student knows that he/she has completed an activity when the picture has been turned over. Make lists for the student to follow during the day. For example - “Read story starting on page 30 in the Reading Book,” “Do worksheet on page 10 in the Reading Workbook,” and “Read about rocks starting on page 15 in the Science Book.” Student may need to have the list taped to their desk. Some students with Fetal Alcohol Spectrum Disorders may have difficulty relating chalk board instructions to their own behavior. Place each activity in two baskets. Have two baskets for a puzzle, two baskets for a matching activity, two baskets for lacing cards, etc. Having one activity in a set of baskets will help keep the student’s attention on the activity for a longer period of time. Take the activity out of the “start” basket and when the student has finished the activity, the student puts the activity into the “finish” basket. Keep activities in a designated place. The student will know where to return the activity when he/she is finished with the activity. Shelves and bookcases should be enclosed if possible to eliminate visual distractions. Use vivid colors to emphasize important concepts. Emphasize with sound and movement 35


the factors that complement the learning objects. During organized activities, students with hyperactivity need structure. Students need a sequence of activity. Students need to know what behaviors will be acceptable. For example - “During this activity we will stay in our chairs,” “There will not be any talking,” “Keep your eyes on your own paper,” and “If you want help, raise your hand and I will come to you.” Expect all students to follow directions together. Wait until everyone follows the first direction before giving further directions. For example - “put your finger on the picture of the dog on your worksheet, so we are all looking at the same thing.” Wait for everyone to follow the direction before moving forward. Loosely structured activities must be balanced with highly structured activities to give the student an opportunity to move about, visit, relax, etc. Structure the day alternating quiet time, active time, quiet time, active time, etc.

Managing Behavior Tantrums Remain calm and quiet. The teacher’s body language should not get the student excited. Talk in a calm voice and walk slowly. If the teacher is relaxed, this will help the student relax. Let the student know there is a protocol for loss of control. Taking the student’s hand and holding it for a short time will give the student a signal that the teacher thinks the student is losing control. If restraint is necessary, the teacher needs to exercise care and control. Talk to the student, telling him/her that you are help them control their behavior. For example - “I am going to hold onto you until you are calm,” “Are you feeling better?” or “Let me know when you are ready for me to let go.” Take the student to a different room if necessary. Soft music and soft colors in the room may help calm the student. Talk to the student in a calm, soft voice. Ask the student to tell the teacher when he/she is ready to go back to the classroom. Determine what happed before the tantrum occurred. Look for antecedents to the behavior. Antecedents are the events/things that happen which cause the student to lose his/her temper. Look at different ways to eliminate the chances of the student throwing a tantrum. If the student has an extremely difficult time with loud noises and lots of activity, the student should be taught in a relatively quiet and calm area. Anther way of reducing the likelihood of the child having a tantrum is to teach the 36


student new ways of dealing with his/her stress. For example - teach the student to say “I’m mad.” The student’s diet could be a contributing factor for the behavior. Observe the child for any health problems. For example - a student may pull at his/her ears when they have an earache. Ask the student to “show me where you hurt.” Ignore negative behavior whenever possible. Avoid overreacting to negative behavior. Build a positive reinforcement system. As the student finishes each activity on the picture calendar, give the student positive reinforcement for his/her efforts in completing the activity. When the student does a good job on a project, tell the student what he/she did right. For example - “I really like the way you wrote your k’s.”

Math Memorized counting from one to ten does not mean that the student understands what the numbers mean. Teach the student what the number “one” means before any more numbers are taught to the student. Ask the student to hand you one crayon or draw one circle. Cut the numbers out of paper, glue oatmeal, rice, glitter, etc. to the number. The child can then see, hear and feel the number. Touch and count objects. Teach functional math. For example - money, time, addition, subtraction. Teach strategies for problem solving versus the memorization of facts. Using the student’s fingers or counting tools may assist with addition and subtraction. A calculator may assist in teaching math to students with a Fetal Alcohol Spectrum Disorder. Using fingers or a calculator should not be the first choice. However, they should not be ruled out if they can benefit the student’s ability to learn math. A calculator may be necessary for the student to do multiplication and division.

Reading Some students may have difficulty focusing their eyes on the left side of the page and moving their eyes to the right. A student who uses a piece of paper or ruler under the line they are reading may have an easier time. Use a green marker at the left side, changing to a red marker at the right side for written work. Use colored arrows to signal starting points and direction from left to right. Use books with simple, plain pictures. Small detailed marks in a picture can distract the student. Use books on tape. Provide the student with books that correspond to the student’s interest area and independent reading levels. Independent reading level means then student can read 90% of the words in the book. 37


Read aloud to the students daily and provide daily uninterrupted silent reading periods. Before the student begins reading, ask questions about the material for the student to think about while they are reading.

Concrete Teaching Methods Use as much sensory stimulation as possible to teach each concept. For example - teaching the color “orange.” Wear orange clothes. Have the student paint with orange paint. Use orange construction paper for projects. Serve oranges for a snack. Use objects as much as possible to teach concepts. For example - teaching about “circles.” Use a cookie cutter to cut circle sandwiches. Cut circles from construction paper and glue on round cereal or circles of paper. Teaching activities must be “concrete.” For example - teaching a student to stay in a specified area of the yard. Use 4 large orange cones to designate an area. Tell the student to stay inside the 4 cones. When the student has learned to stay inside the cones, gradually expand the area the student is allowed to play in. For example - the question “what do you want?” This question is very abstract. Give the student choices he/she can see, feel, touch or hear.

Short Attention Span Determine how long the student usually works on an activity. Ask the student to do “one more.” For example - if the student is drawing circles and the student stops, ask the student to draw “one more” circle. The teacher should never make the student do more something more than once after they have said “one more.” This approach should increase the student’s attention span over time. Determine what activity the student can attend to the longest. Determine what it is about that activity that allows the student to attend. Try to generalize those features to other activities. Use color to highlight important information. Check on student at the beginning, middle and end of assignments to ensure the student is understanding and following directions. Use visual cues to signal start and stop. Vary presentation style. The teacher should change the tempo of their speech. For example - speed up and slow down. 38


The teacher should vary the inflection, quality and volume of their speech. Use cognitive cues. For example - “Now this is important” or “Point to the number 2 with your finger.” Use the student’s interests to “hook” them. Start lessons by activating prior knowledge and experiences. Use novelty items such as pictures, objects, costumes, etc. Use non-invasive prompts. Eye Contact Tap on Desk or Book Touch the Student Give students with a Fetal Alcohol Spectrum Disorder an outline of the lesson to increase listening and comprehension.

Social Behavior Show the student how to share playground equipment. The teacher may need to use a timer to share the most popular playground equipment. Teach the student how to be a friend. Use puppets or dolls to role play. Emphasize the feelings of others. Practice using manners, consideration statements and apologies. Teach the student how to sit with a friend at the table. Emphasize interaction, sharing, courtesy, etc. Use peer tutoring. Pair children for a week so the student with a Fetal Alcohol Spectrum Disorder can learn from children who do not have a Fetal Alcohol Spectrum Disorder. Allow students with a Fetal Alcohol Spectrum Disorder to help the other students. For example - Have the student with a Fetal Alcohol Spectrum Disorder collect finished papers or distribute worksheets. Capitalize on academic strengths of the student with a Fetal Alcohol Spectrum Disorder.

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Educational Techniques for Junior and High School Students Environment Students with a Fetal Alcohol Spectrum Disorder usually need more one-on-one teaching. Increased staff should be a considered. Students with a Fetal Alcohol Spectrum Disorder may need to have repetition of information presented during class. Calm and Quiet Soft music may relax the environment during breaks. Tone down classrooms so they are not overly stimulating. Keep the number of objects hanging from the ceiling and on the walls to a minimum. Use calm colors of paint on the walls. Reduce classroom clutter. Use bulletin boards as teaching tools, use soft colors. (Bulletin boards could be covered if they are not in use.) Students might benefit from being able to use headphones during quiet time. Students with a Fetal Alcohol Spectrum Disorder may not always be able to block out extra noises. For example - The ticking of a clock or the teacher talking with other students may distract students with a Fetal alcohol Spectrum Disorder. Structure Establish a few simple rules. Same rules are enforced the same way. Use the same language when enforcing the rules. Transition from One Activity to Another Give the student reminders for ending and beginning activities. Use tactile signals. For example - touch the student’s shoulder or elbow and say “the bell will ring in five minutes, you need to finish up” or “we will go to lunch when the bell rings.” It is important for the student to have a fairly consistent routine that is followed every day. Keep the class schedule posted and refer to it before each transition. Teach classroom routines. Use pictures in sequence when students have difficulty remembering the routine. For example - entering the classroom at the beginning of the day, sharpening pencils, getting teachers attention, walking in the hallway, handing in homework, or using the restroom. Provide notebooks for the students which have all their classroom activities in order for the day. This gives the student a concrete item with which to structure his/her day. 40


If possible, class periods should not exceed 20 minutes. The student could be allowed to carry the book to the reading area. Students with a Fetal Alcohol Spectrum Disorder may need several breaks during the day. Students may need sleep during the day. Students may need to get up and move around more frequently than other students. Plan activities to facilitate movement and creativity between seat work assignments. Students with a Fetal Alcohol Spectrum Disorder may need food snacks during the day.

Evaluations The following evaluations may be helpful in learning more about the studentâ&#x20AC;&#x2122;s development and assist the teacher in planning the teacherâ&#x20AC;&#x2122;s activities. Speech and Language Psychological Motor Adaptive Behavior Interest Inventories Occupational Therapy Physical Therapy Functional Assessment.

Language Development Recognize that students with a Fetal Alcohol Spectrum Disorder may have delayed language development. Use concrete basic language when giving instructions. Use simple sentences. Avoid giving more than one instruction per sentence. Check with the student to make sure he/she understands the given directions. Refer the student to a speech pathologist if appropriate. Sign Language Sign language may be helpful to teach students with a Fetal Alcohol Spectrum Disorder even when they do not have a hearing loss. Sign language is concrete and visible and can be used along with verbal language.

Managing Hyperactivity Provide structure and a predictable routine. Implement as few rules as possible and only the rules you are willing to enforce. Allow students to sit in their chairs as comfortably as possible. Rapidly growing students are unable to maintain strict posture and enforcing it can be frustrating for both teachers and students. Limit time frames for one activity to no more than 30 minutes if possible. Keep the environment structured. 41


Make a picture calendar. Make a board with hooks. Laminate pictures of activities for the whole day. For example - have a picture of a student taking off their jacket. Have a picture of the student in the classroom. As the student completes each activity during the day, the student would turn the picture over. The student knows that he/she has completed an activity when the picture has been turned over. Make lists for the student to follow during the day. For example - “Read story starting on page 30 in the Reading Book,” “Do worksheet on page 10 in the Reading Workbook,” and “Read about rocks starting on page 15 in the Science Book.” Student may need to have the list taped to their desk. Some students with Fetal Alcohol Spectrum Disorders may have difficulty relating dry erase board instructions to their own behavior. Place each activity in two baskets. Having one activity in a set of baskets will help keep the student’s attention on the activity for a longer period of time. Take the activity out of the “start” basket and when the student has finished the activity, the student puts the activity into the “finish” basket. Keep activities in a designated place. The student will know where to return the activity when he/she is finished with the activity. Shelves and bookcases should be enclosed if possible to eliminate visual distractions. Use vivid colors to emphasize important concepts. Emphasize with sound and movement the factors that complement the learning objects. During organized activities, students with hyperactivity need structure. Students need a sequence of activity. Students need to know what behaviors will be acceptable. For example - “During this activity we will stay in our chairs,” “There will not be any talking,” “Keep your eyes on your own paper,” and “If you want help, raiser your hand and I will come to you.” Expect all students to follow directions together. Wait until everyone follows the first direction before giving further directions. Loosely structured activities must be balanced with highly structured activities to give the student an opportunity to move about, visit, relax, etc. Structure the day alternating quiet time, active time, quiet time, active time, etc.

Managing Behavior Negative Behaviors Remain calm and quiet. The teacher’s body language should not get the student excited. Talk in a calm voice and walk slowly. If the teacher is relaxed, this will help the student relax. Let the student know there is a protocol for loss of control. 42


Taking the student’s hand and holding it for a short time will give the student a signal that the teacher things the student is losing control. If restraint is necessary, the teacher needs to exercise care and control. Talk to the student, telling him/her that you are there to help them control their behavior. For example - “I am going to hold onto you until you are calm,” “Are you feeling better?” or “Let me know when you are ready for me to let go.” Take the student to a different room if necessary. Soft music and soft colors in the room may help calm the student. Talk to the student in a calm, soft voice. Ask the student to tell the teacher when he/she is ready to go back to the classroom. Determine what happed before the tantrum occurred. Look for antecedents to the behavior. Antecedents are the events/things that happen which cause the student lose his/her temper. Look at different ways to eliminate the chances of the student throwing a tantrum. If the student has an extremely difficult time with loud noises and lots of activity, the should be taught in a relatively quiet and calm area. Anther way of reducing the likelihood of the child having a tantrum is to teach the student new ways of dealing with his/her stress. For example - teach the student to say “I’m mad.” The student’s diet could be a contributing factor for the behavior. Observe the student for any health problems. For example - a student may pull at his/her ears when they have an earache. Ask the student to “show me where you hurt.” Look for behaviors which may signify visual problems. Abnormal Head Posturing Squinting Holding Paper Close to Face Obvious Errors Made When Working from the Chalkboard Ignore negative behavior whenever possible. Avoid overreacting to negative behavior. Build a positive reinforcement system. As the student finishes each activity on the picture calendar, give the student positive reinforcement for his/her efforts in completing the activity. When the student does a good job on a project, tell the student what he/she did right. For example - “You read the whole story.”

Math

Math may be a difficult subject for students with a Fetal Alcohol Spectrum Disorder. Memorizing the multiplication tables may be difficult for students with a Fetal Alcohol Spectrum Disorder. By the same token, division may be a difficult concept. Teach functional math. For example - money, time, addition, subtraction. Using the student’s fingers or counting tools may assist with addition and subtraction. A 43


calculator may assist in teaching math to students with a Fetal Alcohol Spectrum Disorder. Using fingers or a calculator should not be the first choice. However, they should not be ruled out if they can benefit the student’s ability to learn math. A calculator may be necessary for the student to do multiplication and division.

Reading Some students may have difficulty focusing their eyes on the left side of the page and moving their eyes to the right. A student who uses a piece of paper or ruler under the line they are reading may have an easier time. Use a green marker at the left side, changing to a red marker at the right side for written work. Use colored arrows to signal starting points and direction from left to right. Use books with simple, plain pictures. Small detailed marks in a picture can distract the student. Use books on tape. Provide the student with books that correspond to the student’s interest area and independent reading levels. Independent reading level means then student can read 90% of the words in the book. Encourage reading for enjoyment and developing independence. Incorporate popular magazines, newspapers, school paper, etc. into the student’s reading program. Emphasize reading as a means to communications. For example - note writing, letter writing, memos, posters, etc.

Concrete Teaching Methods Use as much sensory stimulation as possible to teach each concept. Teaching activities must be “concrete.” Provide hands on materials whenever possible. Take students to actual site to teach learning objectives. Allow students to make concrete choices. For example - “Which of these two things do you want?” Avoid abstract questions. For example - “What do you want?” Give students choices that they can see, feel, touch and hear.

Social Behavior Teachers should consult with the school counselor. It is important that teachers work with other professionals using complimentary techniques when addressing the following areas. Inappropriate Sexual Behavior Isolation Depression Loneliness 44


Inappropriate Expectations for Work, School and/or Independence Help students use their personal strengths in order to develop positive recognition and a sense of their value to their school and home communities. Be emphatic, firm and realistic about expectations and performance from students. Treat students with a Fetal Alcohol Spectrum Disorder as valuable, worthwhile human beings with gifts to share. All students see teachers and other school personnel as role models and will follow the examples they set. Teach social skills directly through demonstration, role play and practice in real life situations.

Vocational Education Continue practicing the basic skills necessary to live independently as adults. Academics Daily Living Skills Survival Skills Basic skills should be generalized to a variety of settings. Use a variety of stimulus to elicit behavior. Use a variety of settings. Use a variety of personnel. Curriculum should focus on assisting students to function as social human beings. Understanding rules of social interaction. Taking on responsibilities. Making decisions and realizing their consequences. Develop and practice independent living skills within a group setting - getting along with others in the same living space, sharing responsibilities, cooking, personal hygiene, etc. Curriculum should focus on assisting students to function in the world of work. Identify individual interests and aptitudes. Develop self scheduling skills and community mobility skills. Develop and practice job related skills. Job coaching should focus on teaching routines and educating employers about the studentâ&#x20AC;&#x2122;s characteristics and necessary modifications.

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Websites

Adopting a Substance-Exposed Child (Adopting.org) http://www.adopting.org/adoptions/adopting-a-substance-exposed-child.html Al-Anon/Alateen http://www.al-anonfamilygrounps.org Alcohol Related Birth Injury (FAS/FAE) Resource Site http://www.arbi.org Alcoholics Anonymous http://www.aa.org American Association on Intellectual and Developmental Disabilities (AAIDD) http://www.aaidd.org The Arc http://www.thearc.org The Arium Foundation http://www.arium.org Better Endings New Beginnings http://www.betterendings.org Brain Connection http://www.brainconnection.com Center for Disabilities http://www.usd.edu/cd Center for Neuro Skills, TBI Resource Guide http://www.neuroskills.com Center for Substance Abuse Prevention (CSAP) at the Substance Abuse and Mental Health Services Administration (SAMHSA) http://prevetnion.samhsa.gov Centers for Disease Control and Prevention (CDC) http://www.cdc.gov

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Childrenâ&#x20AC;&#x2122;s Academy for Neurodevelopment & Learning http://www.kidscanlearn.net Edmonton, Canada; FASD Linking the Community Together http://www.region6fasd.ca Family Village http://www.familyvillage.wisc.edu FAS Alaska http://www.fasalaska.com FAS Stars http://www.come-over.to/fasstar FAS World http://www.fasworld.com Fetal Alcohol and Drug Unit at the University of Washington School of Medicine http://depts.washington.edu/fadu Fetal Alcohol Syndrome Community Resource Center http://www.come-over.to/FASCRC Fetal Alcohol Syndrome Diagnostic & Prevention Network (FAS DPN) http://depts.washington.edu/fasdpn Fetal Alcohol Syndrome Family Resource Institute http://www.fetalalcoholsyndrome.org Gentle Teaching http://www.gentleteaching.nl Health Canada http://www.hc-sc.gc.ca/index-eng.php Howard Hughes Medical Institute http://www.hhmi.org March of Dimes http://www.modimes.org Medline Plus from the National Library of Medicine - Fetal Alcohol Syndrome http://www.nlm.nih.gov/medlineplus/fetalalcoholsyndrome.html 47


Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) http://www.mofas.org National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/ncbddd National Center on Birth Defects and Developmental Disabilities (NCBDDD) Fetal Alcohol Spectrum Disorders http://www.cdc.gov/ncbddd/fas/default.htm National Center for Education in Maternal and Child Health http://www.ncemch.org National Institute on Alcohol Abuse and Alcoholism (NIAAA) of the National Institutes of Health (NIH) http://www.niaaa.nih.gov National Institute on Drug Abuse (NIDA) of the National Institutes of Health (NIH) http://www.drugabuse.gov National Organization on Fetal Alcohol Syndrome (NOFAS) http://www.nofas.org National Womenâ&#x20AC;&#x2122;s Health Information Center, U.S. Department of Health and Human Services http://www.4woman.gov PACER Center http://www.pacer.org Pregnancy and Alcohol.org - Includes the Family Empowerment Network (FEN) http://pregnancyandalcohol.org Society for Neuroscience http://www.sfn.org South Dakota Division of Alcohol and Drug Abuse, South Dakota Department of Human Services http://dhs.sd.gov/ada South Dakota Special Education Programs, South Dakota Department of Education http://doe.sd.gov/oess/specialed/index.asp

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Substance Abuse and Mental Health Service Administration, U.S. Department of Health and Human Services http://www.samhsa.gov Substance Abuse and Mental Health Service Administration - National Clearinghouse for Alcohol and Drug Information (NCADI) http://ncadi.samhsa.gov Teaching Students with Fetal Alcohol Syndrome/Effects: A Resource Guide for Teachers http://www.bced.gov.bc.ca/specialed/fas Zero to Three http://www.zerotothree.org Please Note: Inclusion of websites in the Fetal Alcohol Spectrum Disorders Handbook does not imply endorsement by the Center for Disabilities, the Department of Pediatrics, the Sanford School of Medicine or The University of South Dakota. Content of the websites listed in the Fetal Alcohol Spectrum Disorders Handbook is the sole responsibility of the authors of each website.

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Organizations Al-Anon/Alateen 1600 Corporate Landing Parkway Virginia, Beach VA 23454 Phone - (757) 563-1600 Meeting Information - 1-888-425-2666 Website - www.al-anon.alateen.org

“For over 50 years, Al-Anon (which includes Alateen for younger members) has been offering hope and help to families and friends of alcoholics. It is estimated that each alcoholic affects the lives of at least four other people . . . alcoholism is truly a family disease.”

Alcoholics Anonymous (AA) P.O. Box 459 New York, NY 10163 Phone - (212) 870-3400 Website - www.aa.org

“Alcoholics Anonymous (AA) is a fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problem and help others to recover from alcoholism.”

American Association on Intellectual and Developmental Disabilities (AAIDD) 444 North Capital Street, NW Suite 846 Washington, DC 20001 Phone - 1-800-424-3688 Website - www.aaidd.org

The American Association on Intellectual and Developmental Disabilities (AAIDD) “promotes progressive policies, sound research, effective practices and universal human rights for people with intellectual and developmental disabilities.”

The Arc of the United States 1010 Wayne Avenue, Suite 650 Silver Spring, MD 20910 Phone - (301) 565-3842 or 1-800-433-5255 Website - www.thearc.org

“The Arc of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with our network of members and affiliated chapters, we improve systems of supports and services; connect families; inspire communities and influence public policy.”

Canadian Centre on Substance Abuse 75 Albert Street, Suite 300 Ottawa, ON K1P 5E7 Phone - (613) 235-4048

“The Canadian Centre on Substance Abuse has a legislated mandate to provide national leadership and evidence-informed analysis and advice to mobilize collaborative efforts to reduce alcohol- and other drug-related harms.”

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Center for Disabilities Department of Pediatrics Sanford School of Medicine of The University of South Dakota 1400 West 22nd Street Sioux Falls, SD 57105 Phone - (605) 357-1439 or 1-800-658-3080 Website - www.usd.edu/cd

The Center for Disabilities conducts diverse yet integrated activities through academic training, community service, information dissemination, and research/evaluation, all reflecting state-of-the-art knowledge and experiences in the area of disabilities. The Center is home to many projects including NOFAS South Dakota which seeks to improve FASD prevention efforts, to improve FASD identification efforts, and to improve the service and supports provided to individuals affected by FASD.

Family Empowerment Network (FEN) University of Wisconsin School of Medicine and Public Health Department of Family Medicine 777 South Mills Street Madison, WI 53715 Phone - (608) 262-6590 or 1-800-462-5254 Website - http://pregnancyand alcohol.org

The Family Empowerment Network (FEN) is a “resource, referral, support and research program serving families affected by fetal alcohol spectrum disorders (FASD) and the providers who serve them. FEN’s mission is simple, to empower families through education and support.”

Fetal Alcohol Syndrome Family Resource Institute (FAS*FRI) P.O. Box 2525 Lynnwood, WA 98036 Phone - (253) 531-2878 or In Washington State - 1-800-999-3429 Website - www.fetalalcohol syndrome.org

The mission of the Fetal Alcohol Syndrome Family Resource Institute (FAS*FRI), “a non-profit organization, is to identify, understand and care for individuals disabled by prenatal alcohol exposure and their families, and to prevent future generations from having to live with this disability.”

Join Together 715 Albany Street, 580-3rd Floor Boston, MA 02118 Phone - (617) 437-1500 Website - www.jointogether.org

“Join Together is a program of the Boston University School of Public Health. Since 1991, it has been the nation’s leading provider of information, strategic planning assistance, and leadership development for community-based efforts to advance effective alcohol and drug policy, prevention, and treatment.”

March of Dimes 1275 Mamaroneck Avenue White Plains, NY 10605 Phone - (914) 997-4488 Website - www.modimes.org

The mission of the March of Dimes is to “improve the health of babies by preventing birth defects, premature birth, and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies’ lives.” 51


National Center for Education in Maternal and Child Health (NCEMCH) Georgetown University Box 571272 Washington, DC 20057 Phone - (202) 784-9770 Website - www.ncemch.org

“The National Center for Education in Maternal and Child Health Provides national leadership to the maternal and child health community in three key areas - program development, education, and state -of-the-art knowledge - to improve the health and well-being of the nation’s children and families.”

National Clearinghouse for Alcohol and Drug Information (NCADI) P.O. Box 2345 Rockville, MD 20847 Phone - (240) 221-4019 or 1-800-729-6686 Website - http://ncadi.samhsa.gov

“[Substance Abuse and Mental Health Services Administration’s] SAMHSA’s National Clearinghouse for Alcohol and Drug Information (NCADI) is the Nation’s one-stop resource for information about substance abuse prevention and addiction treatment.”

National Institute on Alcohol Abuse and “NIAAA provides leadership in the national effort to reduce alcohol-related problems by: conducting and Alcoholism (NIAAA) supporting research in a wide range of scientific 5635 Fishers Lane, MSC 9304 areas including genetics, neuroscience, Bethesda, MD 20892 epidemiology, health risks and benefits of alcohol Phone - (301) 443-3860 consumption, prevention and treatment; Website - www.niaaa.nih.gov coordinating and collaborating with other research institutes and Federal Programs on alcohol-related issues; collaborating with international, national, state, and local institutions, organizations, agencies, and programs engaged in alcohol-related work; and translating and disseminating research finding to health care providers, researchers, policymakers, and the public.” National Organization on Fetal Alcohol Syndrome (NOFAS) 900 17th Street, NW, Suite 910 Washington, DC 20006 Phone - (202) 785-4585 or 1-800-66-NOFAS (1-800-666-6327) Website - www.nofas.org

“The National Organization on Fetal Alcohol Syndrome is dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and to improving the quality of life for those affected individuals and families.”

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National Organization on Fetal Alcohol Syndrome - South Dakota (NOFAS-SD) Center for Disabilities Department of Pediatrics Sanford School of Medicine of The University of South Dakota 1400 West 22nd Street Sioux Falls, SD 57105 Phone - (605) 357-1439 or 1-800-658-3080 Website - www.usd.edu/cd/nofassd

National Organization on Fetal Alcohol Syndrome South Dakota (NOFAS-SD) is a program of the Center for Disabilities. NOFAS-SD focuses on training, services and supports, information dissemination, and research as they relate to Fetal Alcohol Spectrum Disorders (FASD). NOFAS-SD provides a home for all the current and future efforts of the Center for Disabilities in the area of FASD.

South Dakota Division of Alcohol and Drug Abuse Department of Human Services 3800 East Highway 34 Hillsview Properties Plaza c/o 500 East Capitol Avenue Phone - (605) 773-3123 or 1-800-265-3123 Website - http://dhs.sd.gov/ada

The mission of the Division of Alcohol and Drug Abuse is “to reduce the prevalence of substance abuse disorders through prevention and treatment services.”

South Dakota Special Education Programs Department of Education 700 Governors Drive Pierre, SD 57501 Phone - (605) 773-3134 Website - http://doe.sd.gov/oess/ specialed

“It is the mission of Special Education Programs to assure that children with disabilities receive a free and appropriate public education in the least restrictive environment. Special Education Programs accomplishes this mission through professional development trainings, technical assistance and monitoring of special education services provided by public schools districts and agencies.”

Please Note: Inclusion of organizations in the Fetal Alcohol Spectrum Disorders Handbook does not imply endorsement by the Center for Disabilities, the Department of Pediatrics, the Sanford School of Medicine or The University of South Dakota. Actions of the organizations listed in the Fetal Alcohol Spectrum Disorders Handbook are the sole responsibility of the organization and its employees.

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Resources The following resources are available from the Wegner Health Science Information Center (Wegner Center). The Center for Disabilities is a partner in the Wegner Center. For information on borrowing these resources, contact the Center for Disabilities at (605) 3571439 or 1-800-658-3080 (Voice/TTY), contact the Wegner Center at 1400 West 22nd Street in Sioux Falls, South Dakota or by phone at 1-800-521-2987, or contact your local library.

Books

Alcohol, Tobacco, and Other Drugs May Harm the Unborn by Paddy Shannon Cook, Robert C. Petersen, Dorothy Tuell Moore and edited by Tineke Bodde Hasse - 1990

Assessment & Resource Guide for FAS/FAE: Fetal Alcohol Syndrome/Fetal Alcohol Effect by Mary Wegmann, et al - 1995 The Best I Can Be - Living with Fetal Alcohol Syndrome or Effects by Liz Kulp with Jodee Kulp - 2000 The Blood Runs Like a River Through My Dreams: A Memoir by Nasdijj - 2000 Born Substance Exposed, Educationally Vulnerable by Lisbeth J. Vincent, et al - 1991 The Broken Cord by Michael Dorris with forward by Louise Erdrich - 1989 The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities edited by Ann Streissguth and Jonathan Kanter with introduction by Michael Dorris - 1997 Cheers! Hereâ&#x20AC;&#x2122;s to the Baby! by Linda Belle LaFever - 2000 Children of Alcoholics edited by Marc Galanter - 1991 Children, Families, and Substance Abuse: Challenges for Changing Education and Social Outcomes by G. Harold Smith, et al - 1995 Children of Prenatal Substance Abuse by Shirley N. Sparks - 1993 The Difficult Child by Stanley Turecki with Leslie Tonner -2000 Families in Recovery: Coming Full Circle by Carolyn Seval Brooks and Kathleen Fitzgerald Rice - 1997

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Fantastic Antone Succeeds! Experiences in Educating Children with Fetal Alcohol Syndrome edited by Judith S. Kleinfeld and Siobhan Wescott - 1993 FAS: Parent and Child by Barbara A. Morse and Lyn Weiner - 1993 Fetal Alcohol Syndrome by Ernest L. Abel - 1990 Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment by the Committee to Study Fetal Alcohol Syndrome, Division of Biobehavioral Sciences and Mental Disorders, Institute of Medicine - edited by Kathleen Stratton, Cynthia Howe and Fredrick Battaglia - 1996 Fetal Alcohol Syndrome: A Guide for Families and Communities by Ann Streissguth with forewords by Godfrey P. Oakley, Jr. and Kenneth R. Warren - 1997 Fetal Alcohol Syndrome: A Training Manual to Aid in Vocational Rehabilitation and Other Non -Medical Services by Robin A. LaDue, et al - 1999 Fetal Alcohol Syndrome and Fetal Alcohol Effects: Strategies for Professionals by Diane Malbin - 1993 A Healthy Baby - Your Decision: A Series of Stories and Activities on Decision Making, Drugs and Prenatal Development for Ages 11-14 by Patricia S. Eckert for AHTDS-Midwest - 1985 Hearts Open & Hands On - An interactive Learning Tool for Educators, Parents, Caregivers & others Supporting an Adolescent Diagnosed with Fetal Alcohol Syndrome/Fetal Alcohol Effects by Minnesota Department of Children, Families & Learning - 2000 I Would Be Loved by Linda J. Falkner - 2002 Identification of At-Risk Drinking and Intervention with Women of Childbearing Age: A Guide for Primary-Care Providers by National Institute on Alcohol Abuse and Alcoholism and Office of Research on Minority Health - 1999 Identification and Care of Fetal Alcohol-Exposed Children: A Guide for Primary-Care Providers by National Institute on Alcohol Abuse and Alcoholism and Office of Research on Minority Health - 1995 Kids Explore the Gifts of Children with Special Needs by Westridge Young Writers Workshop - 1994 Loosening the Grip: A Handbook of Alcohol Information by Jean Kinney and Gwen Leaton with illustrations by Stuart Copans - 1995

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A Manual on Adolescents and Adults with Fetal Alcohol Syndrome with Special Reference to American Indians by Ann Streissguth, Robin A. LaDue and Sandra P. Randels - 1988 The Martian Child: A Novel About a Single Father Adopting a Son by David Gerrold - 2002 Our FAScinating Journey: The Best We Can Be - Keys to Brain Potential Along the Path of Prenatal Brain Injury by Jodie Kulp, forward by Toni Hager, selections by Teresa Kellerman and Nannette Munn and epilogue by Liz Kulp - 2002 Personal Steps to a Healthy Choice: A Womanâ&#x20AC;&#x2122;s Guide by National Institute on Alcohol Abuse and Alcohol ism and Office of Research on Minority Health - 2000 Problem Drinking by Nick Heather and Ian Robertson - 1997 Program Strategies for Preventing Fetal Alcohol Syndrome and Alcohol-Related Birth Defects by National Institute on Alcohol Abuse and Alcoholism - 1987 Resources Related to Children and Their Families Affected by Alcohol and Other Drugs by Elisabeth Hargrove, et al - 1995 The Source for Syndromes by Gail J. Richard and Debra Reichert Hoge - 1999 Substance-Exposed Infants and Their Families: A Review of the Literature by Miriam Potocky and Thomas P. McDonald - 1992 Summary of Findings from the 1999 Household Survey on Drug Abuse by Division of Population Surveys, Office of Applied Studies, Substance Abuse and Mental Health Services Administration, and the Research Triangle Institute - 2000 Teaching Children Affected by Prenatal Drug Exposure edited by Barbara J. Seitz de Martinez - 1995 Toxic Substances and Mental Retardation: Neurobehavioral Toxicology and Teratology edited by Stephen R. Schroeder - 1987 Understanding Fetal Alcohol Syndrome edited by Barbara J. Seitz de Martinez - 1995 Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE): Final Report by Ann Streissguth, et al 1996

Electronic Resources Adolescence and the Future produced by Perennial Education - 1991 56


Alcohol and Other Drugs produced by Wisconsin Counseling Association - 1988 Alcohol and Pregnancy: Fetal Alcohol Syndrome and Fetal Alcohol Effects produced by John Ralmon Productions - 1992 Alcohol and Pregnancy: Effects on the Unborn Child produced by University of Nebraska Medical Center - 1990 Alcoholism produced by Time Life Medical - 1996 Assessment and the Early Years produced by Altschul Group - 1991 The Broken Cord produced by Catherine Tatge - 1994 Child Development produced by Films for the Humanities and Sciences - 1996 The Child With Special Needs produced by Contemporary Forms - 1998 Children with Alcoholics: From Generation to Generation produced by Kristen Schultz - 1996 The Clinical Diagnosis of Fetal Alcohol Syndrome produced by Flora & Company Multimedia Productions - 1994 Drug Wars: Who Will Cry for Our Children? produced by David Gray - 2002 Dying High: Teens in the ER produced by Human Relations Media - 2003 The Fabulous F.A.S. Quiz Show produced by March of Dimes - 1993 Faces Yet to Come produced by American Institute, University of Oklahoma F.A.S. Series: The Early Years produced by HMS Productions - 1997 Fetal Alcohol and Other Drug Effects: A Four-Part Training Series for Parents and Professionals produced Fetal Alcohol Syndrome Consultation, Education and Training Services (FASCETS) - 2003 Fetal Alcohol Syndrome (FAS): A Global Issue produced by Native American Community Board - 1989 Fetal Alcohol Syndrome produced by Films for the Humanities - 1992 Fetal Alcohol Syndrome and Effects: Whatâ&#x20AC;&#x2122;s the Difference produced by Vision Video - 1991

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Fetal Alcohol Syndrome: Prevention, Diagnosis, Treatment: A Clinical Guide for Obstetric and Pediatric Providers produced by Vida Health Communications - 2000 Journey to Birth produced by March of Dimes - 1984 Last Call: The Sobering trugh About F.A.S., F.A.E. produced by David Grey and Tom Monson - 2001 Let It Not Be In Vain: A Program for the Prevention of Suicide and Alcohol Abuse produced by KNG Production - 1998 Parentsâ&#x20AC;&#x2122; Perspective: Living With a Child Who has FAS produced by Center for Disabilities, South Dakota Department of Health and South Dakota Council on Developmental Disabilities - 1996 A Pregnant Woman Never Drinks Alone produced by Bowman Gray School of Medicine, Wake Forest University - 1987 Preventing FAS produced by Lena Productions - 1989 Sebastian: An Extraordinary Life produced by Child Welfare Training Project, California Department of Health with Wynn Tabbert Something to Celebrate produced by Seneca Productions and Tony Belcourt - 1984 Students Like Me: Teaching Children with FAS produced by Vida Health Communications with Betsy Anderson - 2000 Training Tape: Living with F.A.S./F.A.E.: The Early Years Birth to 12 produced by Vision Video Productions with Bob Blair - 1992 What is FAS? produced by Lena Productions - 1989 Whatâ&#x20AC;&#x2122;s Wrong with My Child? produced by Kate Wenner - 1990 Worth the Trip: Raising and Teaching Children with Fetal Alcohol Syndrome produced by Vida Health Communications - 1996 Please Note: Inclusion of resources in the Fetal Alcohol Spectrum Disorders Handbook does not imply endorsement by the Center for Disabilities, the Department of Pediatrics, the Sanford School of Medicine or The University of South Dakota. Contents of the resources listed in the Fetal Alcohol Spectrum Disorders Handbook are the sole responsibility of the authors, editors, publisher or producers of the resource.

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Bibliography FASD FAQs

Hoyme, H. Eugene. “A Practical Clinical Approach to Diagnosis of Fetal Alcohol Spectrum Disorders: Clarification of the 1996 Institute of Medicine Criteria.” Pediatrics 115. (2005): 39-47. Institute of Medicine (U.S.) Division of Biobehavioral Sciences and Mental Disorders, Committee to Study Fetal Alcohol Syndrome. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and Treatment. Washington, D.C. 1996. National Organization on Fetal Alcohol Syndrome (NOFAS). “FASD: What Policy Makers Should Know.” April 15, 2008. <http://www.nofas.org/MediaFiles/PDFs/factsheets/ policymakers.pdf>. National Organization on Fetal Alcohol Syndrome (NOFAS). “FASD: What School Systems Should Know About Affected Students.” April 15, 2008. <http:// www.nofas.org/MediaFiles/PDFs/factsheets/students%20school.pdf>.

Historical Overview of Fetal Alcohol Spectrum Disorders Abel, Ernest L. Fetal Alcohol Syndrome. Oradell, New Jersey. 1990. Streissguth, Ph.D., Ann. Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore. 1997.

Incidence and Prevalence May, Ph.D., Philip A. and Gossage, Ph.D., J. Phillip. “Estimating the Prevalence of Fetal Alcohol Syndrome: A Summary.” Alcohol Research & Health. 25.3 (2001): 159-167. Accessed electronically at <http://pubs.niaaa.nih.gov/publications/arh253/159-167.htm> on July 29, 2008.

Characteristics of Fetal Alcohol Spectrum Disorders

Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services. “The Physical Effects of Fetal Alcohol Spectrum Disorders.” July 29, 2009. <http:// www.fasdcenter.samhsa.gov/documents/WUNK_Physical_Effects.pdf>. Streissguth, Ph.D., Ann. Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore. 1997. Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services. “Fetal Alcohol Spectrum Disorders: The Basics.” July 29, 2009. <http://www.fasdcenter.samhsa.gov/educationTraining/FASDBASICS/ FASDTheBasics.pdf>.

Current Diagnostic Criteria for Fetal Alcohol Spectrum Disorders Hoyme, H. Eugene. “A Practical Clinical Approach to Diagnosis of Fetal Alcohol Spectrum Disorders: Clarification of the 1996 Institute of Medicine Criteria.” 59


Pediatrics 115. (2005): 39-47. Institute of Medicine (U.S.) Division of Biobehavioral Sciences and Mental Disorders, Committee to Study Fetal Alcohol Syndrome. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and Treatment. Washington, D.C. 1996.

Primary Disabilities in Fetal Alcohol Spectrum Disorders Mattson, Ph.D., Sarah N., Schoenfeld, Amy M., and Riley, Ph.D., Edward P. “Teratogenic Effects of Alcohol on Brain and Behavior.” Alcohol Research & Health. 25.3 (2001): 185-191. Riley, Edward P., McGee, Christie L., and Sowell, Elizabeth R. “Teratogenic Effects of Alcohol: A Decade of Brain Imaging.” American Journal of Medical Genetics. 127C (2004): 35-41. Streissguth, Ph.D., Ann. Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore. 1997.

Secondary Disabilities in Fetal Alcohol Spectrum Disorders

Alcohol Related Birth Injury (FAS/FAE) Resource Site. “Neurodevelopmental Defects Secondary Disabilities.” July 30, 2008. <http://www.arbi.org/prevention/ neuro_second.html>. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. “Protective Factors for Children with FAS.” July 31, 2008. <http://www.cdc.gov/ncbddd/fas/ protective.htm>. Streissguth, Ph.D., Ann. Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore. 1997. Stresissguth, Ann, and Kanter, Jonathan, eds. The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle. 1997.

Prevention

Streissguth, Ph.D., Ann. Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore. 1997.

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