Fetal Alcohol Syndrome (FAS)By Deborah Brauer

"Now I know that I am not responsible for getting fetal alcohol syndrome, but I have to learn to live with it. I think life is hard...but I can't quit.” -Liz Kulp, "The Best I Can Be: Living With Fetal Alcohol Syndrome/Effects"-

Definition of Fetal Alcohol Syndrome: 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 pattern of facial abnormalities (including small eye openings, an indistinct or flat philtrum, and a thin upper lip)

2. Growth deficiencies, including low birth weight

3. Brain damage, such as a small skull at birth, structural defects, and neurological signs, including impaired fine motor skills, poor hand-eye coordination, and tremors

4. Maternal alcohol use during pregnancy“Fetal Alcohol Syndrome is the most severe disorder under the FASD

umbrella, and accounts for 25% of all alcohol effect disorders.” - National Organization on Fetal Alcohol Syndrome

Causes of Fetal Alcohol Syndrome: 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 with other disabilities. Common comorbidities include:

-40% ADHD -15-20% mental

retardation (or intellectual disabilities)

-25% learning disabilities

-30% sensory impairment

-4% cerebral palsy -30% speech and

language disorders

Burd, L, Cotsonas-Hassler, Tania M. et al. “"Recognition and Management of Fetal Alcohol Syndrome." Neurotoxicology and Teratology

Primary characteristics of prenatal alcohol exposure can include:

-Facial Dysmorphia -Height and weight deficiencies -Mental retardation -Developmental delay -Developmental speech and

language disorders -Developmental coordination

disorder -Tremors -Autistic traits -Tourette's traits -Deafness -Central auditory processing

disorder -Impaired intellectual

functioning -Impaired memory - ADD/ADHD -Cerebral Palsy Complex seizure disorder

-Epilepsy -Impaired vision -Serious maxilo-facial

deformities -Cleft palate -Dental abnormalities -Sensory integration problems -Hyper sensitivity to

environmental stimuli -Night terrors -Sleep disorders -Echolalia -Sociopathic behavior -Impaired emotional ability (lack

of empathy) -Difficulty with impulse control -Rigidity -Tight hamstrings

Secondary disabilities can occur in the child with Fetal Alcohol Syndrome if the primary disabilities are not properly addressed.

Secondary disabilities span across several areas and can include: Education: -Learning difficulties -Misbehavior -Difficulty establishing peer

relationships -Truancy Mental Health: -Depression -Anxiety -Attachment difficulties -Eating disorders -Hallucinations -Suicide risk

Independence: -Social problems -Poor peer choices -Addiction: -Behavioral problems -Reactive outbursts -Chronic employment issues -Poverty/Homelessness Sexuality: -Promiscuity -Early pregnancy -Prostitution

-Kulp, Liz and Jodee “The Best I Can Be”, 7

How is Fetal Alcohol Syndrome Diagnosed?

Most people who have Fetal Alcohol Syndrome are diagnosed in early childhood.

One primary identifier is the presence of facial deformities.

An official diagnosis of Fetal Alcohol Syndrome requires three findings: 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 individual's birth mother.

(Cordero, Floyd, and Gerberding, vi-vii, cdc.gov)

Parent and Family Perspectives:

Liz and Jodee Kulp (Liz has Fetal Alcohol Syndrome)

"Both the mother and the child are victims of alcohol. The biological mother did not knowingly harm the FASD child. As the adoptive, foster or biological mother you must move beond the shame, guilt or anger in order to help your child and yourself.“-FASD mom (Kulp, Liz and Jodee, 4)

Many parents of children with FAS mention concerns about how their children are treated by other children, and how their children will adjust as they grow older, and express frustration 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

Iyal's story:

http://www.cdc.gov/CDCTV/StoryOfIyal/index.html

Video should play right after this slide, if it does not, please visit the following link. (Originally embedded video would not upload to Blackboard)

Recommended Educational Practices for Students with FAS in the 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 student's strengths and encourage

positive peer interactions: -watch student's 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 don't 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 information

Note: Classroom methods used for students with FAS can be easily adapted for students with other disabilities because of the high comorbidity rate in students with Fetal Alcohol Syndrome.(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, for example could include activities such as the following:

-The instructor divides students into pairs and gives each pair an object or picture of an object (like this photo of an early Bombadiere snow machine from Manitoba) that has cultural significance to a specific province. The pair of students must listen to the lesson in order to understand what their object's significance. Once the lesson is given, each pair will be called upon to explain their object to the rest of the class.

Activity One:

www.trailcanada.com

Activity Two:

-The instructor divides students into groups, and gives each group a large map (made from poster board or styrofoam board)of the Canadian provinces and territories. Each student is given a few pieces and then the whole class begins assembling the puzzles at the same time.

The student's objectives in this exercise are to complete the map within the time limit and work successfully with his peers to finish the project.

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