"Now I know that I am notresponsible for getting fetalalcohol syndrome, but I haveto learn to live with it. I think Fetal Alcohollife is hard...but I cant quit.”-Liz Kulp, "The Best I Can Be: Living Syndrome (FAS)With Fetal Alcohol Syndrome/Effects"- By Deborah Brauer
Definition of Fetal AlcoholSyndrome: Fetal Alcohol Syndrome (FAS) falls under the umbrella term of Fetal Alcohol Spectrum Disorders (FASD) Because of the high rate of multiple disorders co-existing with Fetal Alcohol Syndrome, FAS is not listed under the Individuals with Disabilities Education Act (IDEA) specifically, but is covered under the "other health impairment" section of IDEA.
According to the US Department of Health and Human Services and the Substance Abuse and Mental Health Services Administration (SAMHSA) Fetal Alcohol Syndrome is defined by four major components: 1. A characteristic 3. Brain damage, such pattern of facial as a small skull at birth, abnormalities structural defects, and (including small eye neurological signs, including impaired fine openings, an indistinct motor skills, poor hand- or flat philtrum, and a eye coordination, and thin upper lip) tremors 2. Growth deficiencies, 4. Maternal alcohol use including low birth during pregnancy weight“Fetal Alcohol Syndrome is the most severe disorder under the FASDumbrella, and accounts for 25% of all alcohol effect disorders.” -National Organization on Fetal Alcohol Syndrome
Causes of Fetal AlcoholSyndrome: Fetal Alcohol Syndrome is caused by maternal consumption of alcohol and is the leading preventable cause of intellectual disabilities (Education Consortium). Fetal Alcohol Syndrome is 100% preventable. Effects of maternal alcohol consumption have been linked to "sensitive" or "critical" periods in prenatal development. The resulting characteristics of maternal alcohol consumption can be extremely varied because different areas of development will be effected by alcohol at the different stages of fetal growth (Rice, Deborah, and Barone, Stan, Environmental and Health Perspectives).
Characteristics of Fetal Alcohol Syndrome:Fetal Alcohol Syndrome has a high rate of comorbidity withother disabilities. Common comorbidities include: -40% ADHD -30% sensory -15-20% mental impairment retardation (or -4% cerebral palsy intellectual -30% speech and disabilities) language disorders -25% learning disabilities Burd, L, Cotsonas-Hassler, Tania M. et al. “"Recognition and Management of Fetal Alcohol Syndrome." Neurotoxicology and Teratology
Secondary disabilities can occur in the child with Fetal Alcohol Syndrome if theprimary disabilities are not properly addressed.Secondary disabilities span across several areas and caninclude: Education: Independence: -Learning difficulties -Social problems -Misbehavior -Poor peer choices -Difficulty establishing peer -Addiction: relationships -Behavioral problems -Truancy -Reactive outbursts -Chronic employment issues Mental Health: -Poverty/Homelessness -Depression Sexuality: -Anxiety -Promiscuity -Attachment difficulties -Early pregnancy -Eating disorders -Prostitution -Hallucinations -Kulp, Liz and Jodee “The Best I Can Be”, 7 -Suicide risk
How is Fetal Alcohol SyndromeDiagnosed? Mostpeople who have Fetal Alcohol Syndrome are diagnosed in early childhood. One primary identifier is the presence of facial deformities.
An official diagnosis of FetalAlcohol Syndrome requires threefindings: 1. Three specific facial abnormalities 2. Growth deficits 3. Central nervous system abnormalities Doctors have difficulty diagnosing FAS in some situations because of high comorbidity rates, especially in cases when physicians do not have much information about the individuals birth mother. (Cordero, Floyd, and Gerberding, vi-vii, cdc.gov)
Parent and Family Perspectives:"Both the mother and the child arevictims of alcohol. The biological mother Liz and Jodee Kulp (Liz has Fetal Alcohol Syndrome)did not knowingly harm the FASD child.As the adoptive, foster or biological motheryou must move beond the shame, guilt oranger in order to help your child andyourself.“-FASD mom (Kulp, Liz andJodee, 4)
Many parents of children with FAS mention concerns abouthow their children are treated by other children, and howtheir children will adjust as they grow older, and expressfrustration and concern regarding their children’s limitations: Concerning home education, one mother of a child with Fetal Alcohol Syndrome wrote: "There were many missing pieces-teaching her was very, very difficult. It was like filling a bucket full of holes. As fast as the information went in, it seemed to pour out.“ - Jodee Kulp, FAS mom
Recommended EducationalPractices for Students with FAS inthe classroom: 1. Give one direction at a time: -Keep instructions uncomplicated and clear, break down instructions into steps, rather than giving an entire task and expecting the student to break it down into steps on his own. 2. Reteach: Keep directions simple, break down lessons/activities into smaller pieces if necessary. -use repetition and consistency -make sure you relate lessons to each other (build on learning)
Recommended Educational Practices(Cont’d): 3. Focus on students strengths and encourage positive peer interactions: -watch students relationships with peers -provide opportunities for student to further develop social skills 4. Create a stable environment with consistent rules and expectations: -Use positive feedback -Talk about what the students with FAS are doing right, rather than focusing on what they dont do very well -Make sure the classroom decor, sounds and lighting do not overstimulate your students
Educational Practices: 5. Provide tactile examples of what you are teaching: -Give the student with FAS something he can touch, handle, and connect with the concepts of the lesson -Multiple sensory input will help the student better process and integrate new informationNote: Classroom methods used for students with FAS can beeasily adapted for students with other disabilities because ofthe high comorbidity rate in students with Fetal AlcoholSyndrome.(Kulp, 82, Watson, Sue "Fetal Alcohol Syndrome," Blaschke, Maltaverne,Struck, Fetal Alcohol Spectrum Disorders Education Strategies, 41 )
Activities: In an example lesson for students with FAS, educational practices should include hands-on tactile learning and peer interaction.A lesson on Canadian Geography, forexample could include activities suchas the following:
Activity One:-The instructor divides students into pairs and gives each pair anobject or picture of an object (like this photo of an earlyBombadiere snow machine from Manitoba) that has culturalsignificance to a specific province. The pair of students mustlisten to the lesson in order to understand what their objectssignificance. Once the lesson is given, each pair will be calledupon to explain their object to the rest of the class.
Activity Two:-The instructor dividesstudents into groups, andgives each group a largemap (made from posterboard or styrofoam www.trailcanada.comboard)of the Canadianprovinces and territories. The students objectives in thisEach student is given a exercise are to complete thefew pieces and then the map within the time limit andwhole class begins work successfully with hisassembling the puzzles at peers to finish the project.the same time.
CITATIONS: US Department of Health and Human Services and the Substance Abuse and Mental Health Services Administration (SAMHSA). "The Language of Fetal Alcohol Syndrome Disorders." Web. Accessed 24 November, 2012. http://www.fasdcenter.samhsa.gov/documents/WYNKLanguageFASD2.pdf National Organization on Fetal Alcohol Syndrome. Web. Accessed 24 November, 2012. http://www.nofas.org/faqs/what-is-fetal-alcohol-syndrome-fas/ Rice, Deborah and Barone, Stan Jr. "Critical Periods of Vulnerability for the Developing Nervous System: Evidence From Humans and Animal Models." Environmental and Health Perspectives. Vol. 108, Supplement 3. 526. Jue 2000. Print. http://www.ncbi.nlm.nih.gov.ezproxy.library.und.edu/pmc/articles/PMC1637807/pdf/envhper00312-0143.pdf "Fetal Alcohol Syndrome" TCHP Education Consortium. Web. December 2000. http://www.acbr.com/fas/FASbook2.pdf Burd, L, Cotsonas-Hassler, Tania M. et al. "Recognition and management of fetal alcohol syndrome." Elsevier Inc. Neurotoxicology and Teratology 25 .2003. 681–688. Web. http://www.onesci.com/journals/science_journal_17.pdf Kulp, Liz and Kulp, Jodee. "The Best I Can Be: Living with Fetal Alcohol Syndrome or Effects." Better Endings New Beginnings. 1-83. February, 2001. Print. Blaschke, Kristen, Maltaverne, Marcia and Struck, Judy. "Fetal Alcohol Spectrum Disorders Educational Practices." Center for Disabilities, Sanford School of Medicine of The University of South Dakota. p 41. 2009. Web. Accessed 25 November, 2012. http://www.usd.edu/medical-school/center-fordisabilities/upload/fasdeducationalstrategies.pdf Liz and Jodee Kulp, image: http://www.betterendings.org/LibertyRidgeMedia/BestICanBe.htm Cordero, Floyd, and Gerberding. "Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis." National Center on Birth Defects and Developmental Disabilities. vi-vii. Web. May, 2005. Accessed 24 November, 2012. http://www.cdc.gov/ncbddd/fasd/documents/fas_guidelines_accessible.pdf