Fetal Alcohol Spectrum Disorders (FASD) Brought to you by Anchorage School District Nurses Kim Beckett, Ruth Bogert, Luann Fogels, Jan Ilutsik, Paula Mottola, Amy Owens, Barb Pennington, Kathy Seybert, and Susie Whited

FASD is an umbrella term used to define the following disorders:  Fetal Alcohol Syndrome (FAS)  Partial Fetal Alcohol Syndrome (PFAS)  Fetal Alcohol Effects (FAE)  Alcohol-Related Neurodevelopment Disorder (ARND)  Alcohol-Related Birth Defect (ARBD)

What is FASD? FASD is permanent brain damage caused by prenatal exposure to alcohol. It is a lifelong disability and one that requires the affected child be supported in a stable and structured environment to maximize his or her potential. FASD is permanent brain damage caused by prenatal exposure to alcohol. It is a lifelong disability and one that requires the affected child be supported in a stable and structured environment to maximize his or her potential.

Number of People with a FASD  No one knows for certain how many individuals are born each year with a FASD.  No one knows how many individuals are living with individuals are living with a FASD. a FASD. Photo property of SAMHSA.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Do You have a Student with FASD in your Classroom?  It is likely that there are children with FASD in every school system.  A school system with10,000 students might have 80 to 100 students with learning problems related to FASD. SAMHSA FASD Center for Excellence: asdcenter.samhsa.gov asdcenter.samhsa.gov

Cause of FASD  The sole cause of FASD is women drinking alcoholic beverages during pregnancy.  Alcohol is a teratogen.  There is no proven safe amount of alcohol use during pregnancy. “Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus.” —IOM Report to Congress,  SAMHSA FASD Center for Excellence: asdcenter.samhsa.gov asdcenter.samhsa.gov

FASD Facts  Leading known cause of preventable mental retardation.  Not caused on purpose.  Can occur anywhere and anytime pregnant women drink.  Not caused by biologic father’s alcohol use.  Not a new disorder.  SAMHSA FASD Center for Excellence: asdcenter.samhsa.gov asdcenter.samhsa.gov

Simplified Fetal Development Chart

Physical Abnormalities associated with FASD EYE: crossed eyes, poor vision, optic nerve abnormalities EAR: outer ear abnormalities, low set ears, sensory, neural hearing loss, frequent ear infections MOUTH and JAW: dental problems, dysfunctional movements of tongue and larynx MOUTH and JAW: dental problems, dysfunctional movements of tongue and larynx SKELETAL DEFECTS: missing bones, clubfoot, hand and finger deviations ORGAN PATHOLOGY: heart problems, urogenital and genital anomalies, malformed or missing kidney SENSORY DEFICITS: tactile defensiveness or need for tactile stimulation hypersensitivity to sound, taste, light, smell IMMUNE SYSTEM: allergic reactions, altered susceptibility to infections

FASD and the Brain  Prenatal alcohol exposure causes brain damage.  Effects of FASD last a lifetime. lifetime.  People with FASD can grow, improve, and function well in life with proper support.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Areas Most Affected by Prenatal Alcohol Ingestion

FASD and the Brain Permission to use photo on file.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

FASD and the Brain ABC A. Magnetic resonance imaging showing the side view of a 14- year-old control subject with a normal corpus callosum; B. 12- year-old with FAS and a thin corpus callosum; C. 14-year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

FASD and the Brain A These two images are of the brain of a 9-year-old girl with FAS. She has agenesis of the corpus callosum, and the large dark area in the back of her brain above the cerebellum is essentially empty space. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Permanent Lifelong Brain Damage += Alcohol KILLS a growing brain!

Parents Parents are often aware that there is something different about the way their child behaves and learns but may not know exactly why that is. Early experiences in school are often the first time that specific concerns are raised and a family is encouraged to seek medical or psychological evaluations. or psychological evaluations.

Typical Difficulties for Students with a FASD

Memory Problems  Multiplication  Time sequencing ?  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Information Processing Problems  Say they understand when they do not  Have verbal expressive skills that often exceed their level of understanding  Misinterpret others’ words, actions, or body movements  Have trouble following multiple directions YES! (How do you straighten up? Make sure the bed/chair is straight?) Straighten up your room and put your toys away. Do you understand?  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Sensory Integration Issues  Are overly sensitive to sensory input Upset by bright lights or loud noises Upset by bright lights or loud noises Annoyed by tags in shirts or seams in socks Annoyed by tags in shirts or seams in socks Bothered by certain textures of food Bothered by certain textures of food  Have problems sensing where their body is in space (i.e., clumsy)  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Executive Function Deficits  Go with strangers  Repeatedly break the rules  Cannot entertain themselves  Have trouble changing tasks  Do not accurately pick up social cues  Do not learn from mistakes or natural consequences  Frequently do not respond to point, level, or sticker systems  Give in to peer pressure  Have trouble with time and money I’m late!  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Information Processing Problems  Do not complete tasks or chores and may appear to be oppositional  Have trouble determining what to do in a given situation  Do not ask questions because they want to fit in  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Primary Disabilities of Students with a FASD  Lower IQ  Impaired ability in reading, spelling, and arithmetic  Lower level of adaptive functioning; more significantly impaired than IQ Streissguth, et al. (1996) Permission to use photo on file.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Secondary Disabilities of Students with a FASD  Mental health issues  Disrupted school experience  Trouble with the law  Inappropriate sexual behavior  Confinement in jail or treatment facilities  Alcohol and drug problems  Dependent living  Employment problems Streissguth, et al. (1996)  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Approximate Percent of Persons with FASD Secondary Disabilities  = Age 6+  = Age 12+  = Age 21+  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Secondary Disabilities Reduced  Stable home  Early diagnosis  No violence against oneself  More than 2.8 years in each living situation  Recognized disabilities  Diagnosis of FASD  Good quality home from ages 8 to 12  Basic needs met for at least 13 percent of life Streissguth, et al. (1996 )  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Overall Difficulties for Students with a FASD  Taking in information  Storing information  Recalling information when necessary  Using information appropriately in a specific situation Information  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Faces of FASD  The different ‘faces’ of FASD. Sometimes the condition is not physically obvious and the brain damage of prenatal exposure to alcohol is not detected until much later in life  “19 in 20 FASD afflicted children have no obvious physical characteristics of FAS.”  “The most vulnerable children are those without physical characteristics of FAS” Class Notes - May 28, 2008 Characteristic facial features in children of different ethnicities with fetal alcohol spectrum disorders. (A) Child of Northern European descent. (B) Native American child. (C) Black child. (D) Biracial child - Black/White.

Diagnosing Fetal Alcohol Syndrome  Prenatal maternal alcohol use  Growth deficiency  Central nervous system abnormalities  Dysmorphic features Short palpebral fissures Short palpebral fissures Indistinct philtrum Indistinct philtrum Thin upper lip Thin upper lip CaucasianAfrican American Source: Astley, S.J Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code, Third Edition. Seattle: University of Washington Publication Services, p  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

FASD and Mental Health Disorders  Prenatal alcohol exposure may lead to severe behavioral, cognitive, and psychiatric problems  FASD is not a psychiatric disorder  FASD can co-occur with a mental health or substance abuse disorder DSM-IV  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Risks to a Child of Not Accurately Identifying and Treating FASD  Loss of family  Increased substance use  Premature death Photo courtesy of Microsoft.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Strategies To Improve Outcomes for Students with a FASD Sensory Integration Issues  Simplify the student’s environment  Provide a lot of one-to-one physical presence  Take steps to avoid sensory triggers  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Strategies To Improve Outcomes for Students with a FASD Strategies for Memory Problems  Provide one direction or rule at a time and review rules regularly.  Use a lot of repetition.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Strategies To Improve Outcomes for Students with a FASD Strategies 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 Tell me what you just heard me say.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Strategies To Improve Outcomes for Students with a FASD Strategies for Executive Function Deficits  Establish achievable goals  Use short-term consequences specifically related to the behavior  Provide skills training and use a lot of role playing. Photo property of SAMHSA.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Strategies To Improve Outcomes for Students with FASD Self-Esteem and Personal Issues  Use person-first language (e.g., “child with FASD,” not “FASD child”)  Do not isolate the student  Do not blame students for what they cannot do  Set the student up for success Congratulations  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Avoid Assumptions  The biggest mistake many professionals make in working with students with FASD is thinking that, because they said it, they are capable of doing it without ongoing assistance.  It takes them longer to process.  In a verbal-only instructional setting, students with FASD may understand only every third word.

Please Remember  Punishing a child with FASD for a behavior resulting from brain dysfunction is like punishing a blind child for bumping into the furniture.  Never, ever punish a child with FASD for forgetting.  Students with FASD are developmentally younger than their chronological age. When determining age appropriate behavior, their developmental age is roughly half their chronological age.

Basic Classroom Accommodations  Adequate levels of supervision  Structure and routine  Language that is appropriate and individual to the student

More Strategies… Role play, Social stories, Puppets, Sign Language, Modeling with pictures, Give a concrete list, Use repetition, Inform student if schedule will change, Peer tutor, Seating accommodations, Personalize rules with their names, Do not use “why” questions, Teacher or peer escorts, Visual or verbal reminder when end of recess is approaching, Use color coding, Use video instruction, Use rhythm, rhyme and rap, Computer based learning programs, Flashcards, Rephrasing, Physical guidance, Provide extra time, Create a safe place in each classroom

 Always make concrete statements, not generalizations  Consequences must be adaptable  Consistency in schedules or routines  Consistency reduces stress  Interpreter is needed to guide them through life due to naiveté  Listen  Make personal relationships early on  Music and rhythm make a difference, use it whenever possible  Never punish a child with FASD for bad behavior  Patience and a sense of humor are crucial Strategies for Working with Secondary Students

Strategies for Working with Secondary Students, continued…  Pay attention to bullying, many FASD children are being mistreated  Power struggles do not work, practice what to do, never what NOT to do  Provide a safe place when student is in “overload” for relaxation and de-escalation  Redefine success, help the child be successful today  Slow the pace by using sign language, pictures, and peer helpers  Success one day at a time, build habit patterns for the future  Think of FASD as a disability of language rather than of behavior  Try alternative instructional modalities (if one way does not work, try another)  Use multi-sensory modalities as much as possible Realize that developmental age is approximately one half of cognitive age  When reviewing rules, have the student write his/her own name in front of the rule so the rule will directly apply

 S - If a student with FASD is finding it frustrating or difficult to do something, S top the activity  O - O bserving a child’s actions in a busy classroom can be difficult; it is essential, however, especially if the situation involves conflict with the child or you are feeling frustrated  A - A ssess your observations of a child’s behavior in terms of differences in his or her brain function. The child is not being bad; the brain is damaged  P - Successful P lans are creative. Accommodating children, rather than trying to change or “fix” them, means a greater likelihood of success “SOAP” Strategy

Transitions  Pay attention to all Transitions; Elementary to Middle School… Middle to High School…High School to Adult Life.  Planning should begin well before the move to the new setting to give ample time for placement choices and orientation.  Requires ongoing teaching of daily living skills.

Eight “Magic Key” Strategies in Responding to Students with FASD  Concrete  Consistency  Repetition  Routine  Simplicity  Specific  Structure  Supervision Making a Difference” 2006 Government of Yukon “Making a Difference” 2006 Government of Yukon

Strengths of Students with a FASD  Friendly  Likable  Desire to be liked  Helpful  Determined  Have points of insight  Not malicious Dubovsky, Drexel University College of Medicine (1999)  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

More Strengths of Students with a FASD  Cuddly and cheerful  Happy in an accepting and supportive environment  Loving, caring, kind, sensitive, loyal, and compassionate  Energetic and hard working  Fair and cooperative  Spontaneous, curious, and involved Permission to use photos on file.  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Even More Strengths of Students with a FASD  Highly verbal  Highly moral — deep sense of fairness  Kind with younger children and animals  Able to participate in problem solving with appropriate support  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov

Public Challenge and Responsibility  The statement that FASD students do not “grow up”, but just “get older” with the same behaviors and patterns and needs is an important concept to understand.  As a community, it is imperative to recognize, strategize and plan for the future of these individuals in our society.

Children with a FASD grow up blaming themselves for a disability that is… 100% Preventable

Our VISION for the future… 0% Disabilities

ASD Resources  School Nurse  School Psychologist  FASD Tool Kit – usually held by Lead SpEd teacher  STEP Center

Fetal Alcohol Syndrome Resources Overall guide for Internet resources on FASD Teresa Kellerman’s website FAS family resources National organizaion on Fetal Alcohol Syndrome Resource, training, and action on alcolol related issues Jan Lutke’s website Information on activities surrounding FAS Day (September 9) Links to FAS resources ASD Step Center. A resource center for students, educators, and parents Statewide organization who provides support for families with special needs Dr. Ron Brennan Links to FAS resources on the web Link to books on FASD

References  SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov fasdcenter.samhsa.gov  Centers for Disease Control and Prevention FAS Prevention Team:  National Institute on Alcohol Abuse and Alcoholism (NIAAA):  National Organization on Fetal Alcohol Syndrome (NOFAS):  National Clearinghouse for Alcohol and Drug Information: ncadi.samhsa.gov ncadi.samhsa.gov  These sites link to many other Web sites.