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Working to Prevent Fetal Alcohol Spectrum Disorders Through High School and Middle School Curricula

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This presentation was designed for use in ... Gordon Mendenhall, Ed.D. Assisted by: David D. Weaver, M.D. Becky Kennedy, M.Ed. James M. Ignaut, M.A., M.P.H., C.H.E.S. ... – PowerPoint PPT presentation

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Title: Working to Prevent Fetal Alcohol Spectrum Disorders Through High School and Middle School Curricula


1
Working to Prevent Fetal Alcohol Spectrum
DisordersThrough High School and Middle School
CurriculaThis presentation was designed for
use in Educating Teachers, Administrators and
Others Who Work with Children in the School
System.
Indiana FASD Prevention Taskforce
2
Fetal Alcohol Spectrum DisordersWhat They Are
and How They Impact Your Students
Indiana FASD Prevention Taskforce
3
History of Fetal Alcohol Spectrum Disorders
  • The effects of parental alcohol use have been
    known since the time of Aristotle
  • First described in the literature by Jacqueline
    Rouquette in 1957, although the French physician
    Paul Lemoine (1968) is credited with the first
    publication

www.nlm.nih.gov/hmd/greek/ greek_aristotle.html
4
History of Fetal Alcohol Spectrum Disorders
  • First identified in the US in 1973 by Jones and
    Smith, who coined the term fetal alcohol
    syndrome
  • As of 1989, all alcohol beverages sold in the US
    must carry a warning that drinking during
    pregnancy can cause birth defects

www.fasdcenter.samhsa.gov
5
History of Fetal Alcohol Spectrum Disorders
  • In 1978, the term fetal alcohol effects (FAE)
    was coined to describe conditions that are
    presumed to be caused by prenatal alcohol
    exposure but dont meet the diagnostic criteria
    of FAS
  • In 1996, the Institute of Medicine of the
    National Institutes of Health proposed the terms
    partial FAS, alcohol-related neurodevelopmental
    disorder (ARND), and alcohol-related birth
    defects (ARBD)
  • Now considered fetal alcohol spectrum disorders

6
History of Fetal Alcohol Spectrum Disorders
  • 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.

National Taskforce on Fetal Alcohol Syndrome and
Fetal Alcohol Effects, 2004
7
Fetal Alcohol Spectrum Disorders (FASD)
  • Possible Diagnoses
  • Fetal alcohol syndrome (FAS)
  • Partial FAS (pFAS)
  • Alcohol-related neurodevelopmental
    disorder (ARND)
  • Alcohol-related birth defects (ARBD)



FAE (fetal alcohol effects) is an older term used
to describe the last three listed above.
8
On any given day in the United States
  • 10,657 babies are born
  • 1 of these babies is HIV positive
  • 3 of these babies are born with muscular dystrophy
  • 4 of these babies are born with spina bifida
  • 10 of these babies are born with Down syndrome
  • 20 of these babies are born with FAS
  • 100 of these babies are born with a FASD

From the Executive Summary of the IOM Report.
FAS Community Resource Center.
http//www.come-over.to/FASCRC
9
How Common is FAS and FASD?
  • The prevalence of FAS is estimated to be about 1
    in 500 to 1 in 1000 births
  • The prevalence of FASD is estimated to be nearly
    1 in 100 births

Eustance LW et al., 2003
10
How much is too much?
  • The more alcohol consumed during pregnancy, the
    higher the risk for adverse effects
  • Binge drinking is particularly harmful!
  • No amount of alcohol has
  • been proven safe to
  • consume during pregnancy
  • Every FASD is 100 preventable!

11
What is a Drink?
A Binge is four or more drinks on one occasion
for a woman five or more for a man A Drink is
12 ounces of beer, five ounces of wine, or 1.5
ounces of hard liquor

12
The Effect of Alcohol on a Babys Development
  • Alcohol freely crosses the placenta from the
    mother to the baby
  • Blood alcohol levels of the baby are
    approximately equal to that of the mother, within
    minutes of consumption
  • The critical period is the entire pregnancy

13
The Effect of Alcohol on a Babys Development
Development of the brain is occurring throughout
the pregnancy, which means that alcohol exposure
at any point may cause brain damage.
Figure from http//www.fda.gov/cber/gdlns/rvrpreg_
fig1.gif
14
The Diagnosis of FAS
  • Defined by four criteria
  • Exposure to alcohol while in the womb
  • Characteristic facial features
  • Growth problems
  • Involvement of the central nervous system (the
    brain)

15
FAS Facial Features
pubs.niaaa.nih.gov
NOTE Although these features are associated with
fetal alcohol syndrome, they may also be seen in
people who do not have a FASD.
16
FAS Facial Features Smooth Philtrum and Thin
Upper Lip
Smooth philtrum (little to no groove above upper
lip)
Thin upper lip
17
FAS Facial Features Short Palpebral Fissures
(Eye Openings)
Eyes are measured from the outer corner to the
inner corner
18
FAS Facial Features
www.come-over.to/FAS/JohnGrowsUp.htm
19
The Effect of Alcohol on Growth
  • Alcohol consumption increases the risk for having
    a baby with growth problems
  • After birth, exposed children may continue to
    have a decreased growth rate and subsequent short
    stature

Day and Richardson, 2004, AJMG 127C28-34.
www.cdc.gov/growthcharts
20
Alcohol Affects Overall Brain Size
Brain of a healthy baby
Brain of a baby exposed to alcohol
Photo by Sterling Clarren, MD http//www.come-over
.to/FAS/FASbrain.htm
21
Alcohol Affects Brain Function
  • Developmental delays
  • Learning difficulties
  • Mental retardation
  • Speech/language disorders
  • Problems with memory, perception, sensory
    integration, or tactile defensiveness

22
FAS
Normal
  • Neurological differences often appear as
  • Slower processing speed (thinking, hearing,
    etc.)
  • Problems storing and retrieving information
  • Gaps, difficulty forming links or associations
  • Difficulty generalizing
  • Difficulty with abstract concepts
  • Problems seeing next steps or outcomes
  • Disconnections (says one thing but does another)
  • Grasps pieces rather than concepts

Malbin D. 2002
23
A teenager with a FASD, who is 18 years old, may
function at the level of a child or adolescent
Emotional maturity Comprehension Social
skills Concepts of money and time Living
skills Reading ability Physical maturity
6 years 6 years 7 years 8 years
11 years 16
years 18 years
Skill Developmental Age Equivalent
Adapted from www.efsmanitoba.com/html/Final20Pap
er20Defining20Needs20of20women20with20FAS_E2
.htm
24
Primary vs. Secondary Disabilities
  • Primary disabilities result from brain damage due
    to the alcohol exposure
  • Secondary disabilities develop over time due to
    lack of intervention and unmet needs
  • they are believed to be preventable

25
Secondary Disabilities in FASD
  • Mental health issues
  • Disrupted school experiences
  • Inappropriate sexual behavior
  • Trouble with the law
  • Confinement in jail or treatment facilities
  • Alcohol and drug problems
  • Dependent living
  • Employment problems

http//come-over.to/FAS/
26
Secondary Disabilities
www.fasdcenter.samhsa.gov
27
Long Term Consequences of FAS
  • Only 3 of children lived with biological mother
  • Independent living was uncommon
  • Poor behavior was common
  • Average academic function was between 2nd and 4th
    grade

(Streissguth et al. 1991)
28
The Cost of FAS
  • The comprehensive lifetime cost of one baby with
    FAS is at least 2 million
  • The cost to American taxpayers for FAS is
    estimated to be 5 million a day, or up to 6
    billion each year

Lupton, et al. 2004 Substance Abuse and Mental
Health Services Administration
29
Strengths of Individuals with a FASD
  • Friendly
  • Likeable
  • Helpful
  • Determined
  • Loving, caring, kind, sensitive, loyal and
    compassionate
  • Energetic and hardworking
  • Have points of insight
  • Not malicious
  • Cuddly and cheerful
  • Happy in an accepting and supportive environment
  • Fair and cooperative
  • Spontaneous, curious, and involved

30
Strengths of Individuals with a FASD
  • Highly verbal
  • Highly moral with a deep sense of fairness
  • Kind with younger children and animals
  • Creative
  • Eager to please

31
Strengths of Individuals with a FASD
  • Learn by doing, by being shown, and/or by
    relationship
  • Learn through consistency, continuity, and
    relevance
  • Able to participate in problem solving with
    appropriate support
  • Often have a strong long-term visual memory

32
Working with individuals with a FASD
33
Working with Individuals with a FASD
  • Build on strengths
  • Use teaching strategies that focus on these
    strengths

34
A Paradigm Shift
  • We must move from viewing the individual as
    failing if s/he does not do well in a program to
    viewing the program as not providing what the
    individual needs in order to succeed.
  • - Dubovsky, 2000

35
Systems of Care for Those with a FASD
  • Healthcare services
  • Educational services
  • Social and community services
  • Legal and financial services

36
Management of Children with a FASD
  • Physical, occupational, and speech therapies
  • Psychiatrist or psychologist
  • Medications for ADHD, anxiety, depression,
    seizures, explosive behavior, etc.
  • Counseling
  • Pediatrician or developmental pediatrician
    familiar with FASD
  • Other specialists as needed

37
Strategies for Working with Individuals Who Have
a FASD
  • For executive function deficits
  • Use short-term consequences specifically related
    to the behavior
  • Establish achievable goals
  • Provide skills training and use a lot of role
    playing

38
Strategies for Working with Individuals Who Have
a FASD
  • For information processing problems
  • Check for understanding
  • Use literal language
  • Teach the use of calculators and computers
  • Look for misinterpretations of words or actions
    and discuss them when they occur

39
Strategies for Working with Individuals Who Have
a FASD
  • For memory problems
  • Provide one direction or rule at a time and
    review rules regularly
  • Provide repetition of instructional strategies
  • Use frequent reminders

40
Strategies for Working with Individuals Who Have
a FASD
  • For sensory integration issues
  • Simplify the individuals environment
  • Take steps to avoid sensory triggers, which may
    include
  • Wearing clothes with tags or clothes made of
    certain fabrics
  • Being in overly stimulating environments (i.e.
    crowded and loud places)
  • Being in the presence of bright lights

41
Strategies for Working with Individuals Who Have
a FASD
  • For self-esteem and personal issues
  • Use person-first language
  • Do not isolate the person
  • Address issues of grief and loss
  • Do not blame people for what they cannot do
  • Set the person up to succeed

42
Strategies for Working with Individuals Who Have
a FASD
  • To facilitate communication
  • Use a slow pace and soft tone
  • Use simple, concrete directions and cues
  • Use more than one form of communication
  • Avoid the use of idioms
  • Avoid sarcasm
  • Use simple, clear language

43
Strategies for Working with Individuals Who Have
a FASD
  • To facilitate learning
  • Allow longer periods to learn and/or complete
    tasks
  • Break skills into smaller steps
  • Use concrete examples
  • Teach skills in the environment in which they are
    to be used

44
Strategies for Working with Individuals Who Have
a FASD
  • Provide a stable, predictable nurturing
    environment
  • Concentrate on strengths and talents
  • Accept the childs limitations
  • Be consistent with discipline, school, and
    behaviors
  • Use positive reinforcement
  • Closely supervise and be a good role model!
  • Honor the persons feelings
  • REPEAT, REPEAT, REPEAT!

45
Strategies for Working with Individuals Who Have
a FASD
  • For teenagers
  • Focus education on job training and daily living
    skills
  • Closely monitor and supervise
  • Moderately increase responsibilities
  • Provide clear guidance/rules about behavior
  • Provide sex education
  • Provide appropriate/safe recreational activities

46
Strategies for Working with Individuals Who Have
a FASD
  • Discipline
  • Traditional behavioral interventions typically
    dont work
  • Consider whether the behaviors reflect
    neurological differences
  • Consider the environment
  • Invite the person into to the discussion and try
    to identify stuck points

47
Key Words to Remember
  • Concrete
  • Consistent
  • Repetition
  • Routine
  • Simplicity
  • Specific
  • Structure
  • Supervision

48
For More Information
  • Fetal Alcohol Spectrum Disorders Trying
    Differently Rather Than Harder, by Diane Malbin,
    MSW. Available at www.FASCETS.org.
  • Fetal Alcohol Syndrome A Parents Guide to Caring
    for a Child Diagnosed with FAS, by Leslie Evans,
    MS, et al. Available for download at
    http//otispregnancy.org/pdf/FAS_booklet.pdf
  • Fetal Alcohol Syndrome, Fetal Alcohol Effects
    Strategies for Professionals, by Diane Malbin,
    MSW. Hazelden Foundation, Center City, MN.
  • Fetal Alcohol Syndrome Practical Suggestions and
    Support for Families and Caregivers, by Kathleen
    Tavenner Mitchell, MHS, LCADC, and the National
    Organization on Fetal Alcohol Syndrome. Available
    at http//www.nofas.org/estore

49
References
  • Alan Guttmacher Institute. Facts on American
    teens sexual and reproductive health.
    www.guttmacher.org/pubs/fb_ATSRH.htm
  • The Centers for Disease Control and Prevention.
    Fetal alcohol spectrum disorders.
    www.cdc.gov/ncbddd/fas/fasprev.htm
  • Day NL and Richardson GA. 2004. An analysis of
    the effects of prenatal alcohol exposure on
    growth A teratologic model. American Journal of
    Medical Genetics Part C. 127C28-34.
  • Eustace LW, et al. 2003. Fetal alcohol syndrome
    A growing concern for healthcare professionals.
    Journal of Obstetric, Gynecologic, and Neonatal
    Nursing. 32215-221.
  • The Institute of Medicine. 1996 Report on FAS.
    http//www.come-over-.to/FAS/ IOMsummary.htm
  • Lupton C, et al. 2004. Cost of fetal alcohol
    spectrum disorders. American Journal of Medical
    Genetics Part C. 127C242-50.
  • Mattson SN, et al. Teratogenic effects of alcohol
    on brain and behavior. National Institute on
    Alcohol Abuse and Alcoholism. http//pubs.niaaa.ni
    h.gov/publications/ arh25-3/185-191.htm
  • Spadoni AD, et al. 2007. Neuroimaging and fetal
    alcohol spectrum disorders. Neuroscience and
    Biobehavioral Reviews 31239-245.
  • Streissguth AP, et al. 1991. Fetal alcohol
    syndrome in adolescents and adults. Journal of
    the American Medical Association. 265(15)1961-7.
  • Streissguth AP, et al. 2004. Risk factors for
    adverse life outcomes in fetal alcohol sydnrome
    and fetal alcohol effects. Developmental and
    Behavioral Pediatrics 25(4)228-238.
  • Substance Abuse and Mental Health Services
    Administration Fact Sheets. http//www.fasdcenter.
    samhsa.gov/grabGo/factSheets.cfm

50
Helpful Websites
  • National Organization on Fetal Alcohol Syndrome-
    www.nofas.org
  • Fetal Alcohol Syndrome, Education and Training
    Services, Inc.- www.fascets.org
  • The FASD Center for Excellence, Substance Abuse
    and Mental Health Services Administration-
    www.fascenter.samhsa.gov
  • FASlink- http//www.acbr.com/fas/
  • The Arc- http//www.thearc.org/fetalalcohol.html
  • The Centers for Disease Control and Prevention-
    http//www.cdc.gov/ncbddd/fas/default.htm

51
Indiana Resources
  • The Fetal Alcohol Syndrome Center of Indiana -
    Indiana University Medial Center 975 West Walnut
    Street, IB 130 Indianapolis, IN 46202 Phone
    317-274-2450  Fax 317-274-2387   Provides
    diagnosis, education and patient advocacy for
    those affected with prenatal alcohol exposure.
  • CNS - Center for Neurobehavioral Sciences 3010
    E. State Ft. Wayne, IN 46805 Phone
    260-471-2300  Toll Free 1-800-901-8416 Provides
    therapy, education and patient advocacy for those
    affected with prenatal alcohol exposure.
    Organizes a support group for parents and
    caregivers (and other interested parties) of
    those with a FASD.

52
Indiana Resources
  • Indiana Department of Health - IN Perinatal
    Network (IPN), Prenatal Substance Use Prevention
    Program (PSUPP) 2 N Meridian Street
    Indianapolis, IN 46204 Phone 317-233-1269
  • Fax 317-233-1300
  • Referrals and early intervention for
    substance-using pregnant
  • women. Training for professionals.
  • Indiana Protection and Advocacy Services 4701 N
    Keystone Avenue, Suite 222, Indianapolis, IN
    46205
  • Phone 800-622-4845 or 317-722-5555       Fax
    317-722-5564 Statewide agency for persons with
    developmental disabilities. www.in.gov/ipas

53
www.health.state.mn.us/fas/catalog
54
Slides developed by Lisa J. Spock, Ph.D.,
C.G.C. Gordon Mendenhall, Ed.D. Assisted
by David D. Weaver, M.D. Becky Kennedy,
M.Ed. James M. Ignaut, M.A., M.P.H.,
C.H.E.S. Supported by Indiana University
School of Medicine Indiana State Department of
Health Indiana Department of
Education University of Indianapolis
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