Fetal Alcohol Spectrum Disorders Education Strategies Working with Students with a Fetal Alcohol SpectruFemtal ADlcioshoolr Sdpeecrtr uimn D tishored eErsd Eduuccaatiotnio Stnra tSegyiess t e 1m Fetal Alcohol Spectrum Disorders Education Strategies Working with Students with a Fetal Alcohol Spectrum Disorder in the Education System Prepared by: National Organization on Fetal Alcohol Syndrome - South Dakota (NOFAS-SD) Fetal Alcohol Spectrum Disorders Institute Center for Disabilities Department of Pediatrics Sanford School of Medicine of The University of South Dakota 1400 W. 22nd Street Sioux Falls, SD 57105 (605) 357-1439 or (800) 658-3080 (V/TTY) www.usd.edu/cd Developed by: Kristen Blaschke, M.A. Marcia Maltaverne, M.A. Judy Struck, M.A. Layout and Design by: Eric Dalseide The printing of this handbook is made possible through funding provided by the South Dakota Department of Education, Office of Educational Services and Supports. Contract No. 2009-L-158 The development of these materials was supported in part by IDEA Part B Grant #HO27A080091A from the U.S. Department of Education, Office of Special Education Programs through the South Dakota Department of Education, Special Education Programs. The views expressed herein do not necessarily reflect the views of the U.S. Department of Education or any other Federal agency and should not be regarded as such. Special Education Programs receives funding from the Office of Special Education Programs, Office of Special Education and Rehabilitative Services, U.S. Department of Education. This information is copyright free. Readers are encouraged to copy and share it, but please credit the Special Education Programs, South Dakota Department of Education. This handbook is available in alternative format upon request from the Center for Disabilities. © 2009 Center for Disabilities, Sanford School of Medicine of The University of South Dakota 2 Fetal Alcohol Spectrum Disorders Education Strategies forward Working with students who have a Fetal Alcohol Spectrum Disorder is tough! There are days when you will feel like you get little return for your investment. Remember that progress takes time, determination and a lot of repetition, plus a constant focus on the positive. The educational strategies presented in this handbook are intended to be helpful to all teachers who work with students who may have a Fetal Alcohol Spectrum Disorder (FASD). If this is your first time teaching a student with an FASD, this guide should be extremely helpful. While many of the strategies are general and are appropriate to use with all students who may share some of the learning needs of students with an FASD, they should be especially helpful to use with students who have been diagnosed with an FASD. The strategies in this handbook have been arranged by topic to assist you with your planning and organization efforts. Each area contains specific strategies that have been found helpful in the education of students with an FASD. You will want to personalize and adapt the strategies over time in order to get the best results for the students with which you work. I encourage you to try all the strategies but make special note of the ones that you see a particular student respond well to, as these are the ones that you will want to use on a consistent basis. Judy Struck Executive Director National Organization on Fetal Alcohol Syndrome - South Dakota Center for Disabilities Sanford School of Medicine of The University of South Dakota Fetal Alcohol Spectrum Disorders Education Strategies 3 2 Fetal Alcohol Spectrum Disorders Education Strategies table of contents How to Use This Handbook 4 Overview of FASD 5 Section 1: Educating Students with an FASD 11 Section 2: Functional Assessment 17 Section 3: Environmental Modification 25 Section 4: Communication 37 Section 5: Executive Functions 51 Section 6: Brain-based Teaching Methods 95 Visual (Spatial) Learners 99 Auditory (Verbal/Linguistic) Learners 105 Kinesthetic Learners 109 Section 7: Social Skills and Behavior 121 Appendix 139 Appendix 1: Mnemonics 141 Appendix 2: Graphic Organizers 147 Appendix 3: Sponge Activities 158 Appendix 4: Free or Inexpensive Rewards 163 Appendix 5: Executive Function Tools 165 Resources 183 Books 185 Audiovisual Materials 206 Websites 210 Glossary 225 References 235 Fetal Alcohol Spectrum Disorders Education Strategies 3 How to Use This Handbook The FASD Education Strategies Handbook is a reference guide to be used with students suspected of having a Fetal Alcohol Spectrum Disorders (FASD) or who have been diagnosed with an FASD. This guide is meant to be used as a reference tool only and is not considered to be all-inclusive. Recommended strategies may work with some individuals and not with others. Some strategies can be used with students of all ages while others are more appropriate for specific age levels. At the beginning of each category section, a brief description of the category, the signs and symptoms will be listed. Description: A brief description of the category will be included here. What to look for: This will include information regarding students who are having difficulties with this area. A brief description of the different signs and behaviors to look for in a student with an FASD who may be having problems with this will also be included. Strategies that are specific to a certain age group will be identified as such. Please use the following key with this guide: E Elementary M Middle School H High School 4 Fetal Alcohol Spectrum Disorders Education Strategies Overview of FASD Fetal Alcohol Spectrum Disorders (FASD) 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 and/ or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis (FASD Terminology Summit Consensus Statement). The diagnoses found under this umbrella include Fetal Alcohol Syndrome (FAS), Partial FAS, Alcohol-Related Birth Defects (ARBD) and Alcohol- Related Neurodevelopmental Disorder (ARND). Exposure to prenatal alcohol use is the most common cause of birth defects and developmental disabilities in the United States. FASD is 100% preventable! History of Prenatal Alcohol Use The connection between prenatal maternal alcohol consumption and the subsequent difficulties encountered by children has seemingly been known throughout history. Through the ages, depictions illustrating the concern that alcohol can harm a developing fetus have appeared in written form, in art and in oral traditions. There are references in the Old Testament of the Bible and quotes from ancient sources such as the Greek philosopher, Aristotle. Despite the historical evidence for FASD, it was not until modern times that the medical profession began to look at the connection between maternal drinking and child development. In 1973, Dr. David Smith and Dr. Ken Jones, pediatric dysmorphologists at Harborview Hospital in Seattle, Washington, commenced a study into the effects of prenatal alcohol exposure. Since that time, scientists continue to devote their time and energy to understanding the biological and psychological effects of prenatal alcohol exposure. Through their efforts, more information regarding the effects of alcohol on the developing fetus is being understood and we are learning more about the difficulties that individuals with FASD face every day. Researchers and experts have used many different labels since 1973 to describe the effects that prenatal alcohol use has on the fetus. Fetal Alcohol Spectrum Disorders (FASD) is a term used to identify the entire spectrum of diagnoses caused by prenatal alcohol exposure. FASD is a spectrum of neurological, Fetal Alcohol Spectrum Disorders Education Strategies 5 behavioral and cognitive deficits that interfere with growth, learning and socialization caused by maternal consumption of alcohol during pregnancy. The spectrum of alcohol-related birth defects is broad. At one end of the spectrum, the individual may have some cognitive or learning deficits, visual problems or a higher-than-normal pain tolerance. At the severe end, the individual may have mild to severe mental retardation, speech and language delays, facial deformities, heart defects, attention and memory deficits, hyperactivity, extreme impulsiveness, tremors and coordination difficulties and impaired reasoning and judgment. In recent years, studies have been conducted by researchers throughout the world to look further into the cause and effect of prenatal alcohol exposure. These studies have provided additional information regarding the secondary disabilities associated with FASD and the numerous physical and developmental difficulties that individuals with an FASD struggle with in their daily lives. While data is still being collected in many different FASD arenas, it is evident that the provision of services for these diagnosed individuals is a critical need. Prevalence of FASD Nationally, Fetal Alcohol Spectrum Disorders (FASD) affects 1 in 100 live births or as many as 40,000 infants each year. That is more than Spina Bifida, Down Syndrome and Muscular Dystrophy combined (National Organization on Fetal Alcohol Syndrome, n.d.). Estimated Cases Per Year FASD Down Syndrome Spina Bifida Muscular Dystrophy 0 10,000 20,000 30,000 40,000 50,000 According to recent national prevalence rate estimates, 0.5 to 2 infants out of every 1,000 born are affected by Fetal Alcohol Syndrome (FAS) in the United States (May & Gossage, 2001). The results of a study within the Aberdeen Area Indian Health Service identified a prevalence rate of 8.5 per 1,000 live births affected by FAS in reservation areas (Duimstra et al., 1993). Prevalence rates of other disorders in the spectrum (e.g., FAE, ARND) have been estimated to be 6 to 10 times the rates of FAS (May & Gossage, 2001). Economic Impact of FASD The cost of FASD takes a heavy toll on the families of the individual and the 6 Fetal Alcohol Spectrum Disorders Education Strategies United States as a whole. Very little research has been done on the cost of FAS alone, while no research has been identified for the other disorders within the spectrum. Many estimates put the cost of FASD between 1 and 5 million dollars per child in their lifetime. Factor in the cost to society, such as lost productivity, burden on families and poor quality of life and the annual cost of a child with an FASD can increase dramatically. The lifetime costs of FASD might include: medical treatment, psychiatric care, foster care costs, orthodontia, respite care, special education, supported employment, social security benefits, home and/ or residential care and juvenile justice and/or adult corrections systems and agencies. Characteristics of FASD FASD, especially without a confirmed history of prenatal alcohol exposure, is often diagnosed based on the complete set of characteristics present in the individual. As a person with an FASD matures, the effects of the syndrome can be seen in a variety of ways. The signs and symptoms of FASD can include: • Distinctive facial features. • Growth deficits, such as low birth weight. • Brain damage, such as small skull at birth, structural defects and neurological signs. • Physical problems, such as heart, lung and kidney defects. • Behavioral or cognitive deficits – may include cognitive delays, learning disabilities, attention deficits, hyperactivity, poor impulse control, social problems, language deficits and memory problems. • Several neurocognitive features often associated with FASD are learning disabilities, speech and language delays, problems with reasoning and judgment, impairments in abstract thinking, diminished impulse control, volatile emotions, poor social skills and vulnerability to peer pressure. In addition to brain injury, individuals with FAS will have characteristic facial features. The facial features are easiest to identify in children between 3 and 14 years of age. As children with FAS grow older, the facial features may change, making FAS more difficult to recognize. Along with brain injury and facial features, children with an FASD may experience stiffness in their joints, gross and fine motor delays and seizures. These students may need additional assistance in the cafeteria, on the playground and in the classroom. Providing an appropriate education is important for all students including children with prenatal alcohol exposure. Children with prenatal alcohol exposure do not always exhibit obvious physical differences from their peers so they are often expected to act and learn as other children do (Garven et al., 2000). Fetal Alcohol Spectrum Disorders Education Strategies 7 Brain Development and Prenatal Exposure to Alcohol Prenatal alcohol exposure damages the brain of the developing fetus. This irreversible brain damage is associated with a number of the primary disabilities in individuals with an FASD. This damage is called static encephalopathy. All areas of the brain can be damaged, depending on the stage of development at the time of exposure to alcohol. 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 are exposed to alcohol prenatally. In the worst cases, the corpus callosum may be absent. Frontal Lobes Corpus Callosum Hippocampus Basal Ganglia Hypothalamus Cerebellum 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 that region or regions is/are responsible. Areas of the brain which are most often affected are: • Frontal lobes - executive functions, impulse control, judgment. • Cerebellum - coordination, movement, behavior, memory. • Basal Ganglia - processes memory, time perception, setting goals, predicting outcomes. • Hippocampus - learning and memory. • Corpus Callosum - processes information between right and left brain. Secondary Disabilities Children with an FASD often grow up with social and emotional problems. They may have mental illness or substance abuse problems, struggle in school or become involved with the corrections system. Streissguth, Barr, Kogan & Bookstein (1996) conducted a study of over 400 individuals with an 8 Fetal Alcohol Spectrum Disorders Education Strategies