FAS 101 Disabilities of Discovery: Insights Into Brain- Based Disorders: For Teachers by Teachers (WB9 WC1)

Size: px

Start display at page:

Download "FAS 101 Disabilities of Discovery: Insights Into Brain- Based Disorders: For Teachers by Teachers (WB9 WC1)"

Osborn Sullivan
5 years ago
Views:

1 FAS 101 Disabilities of Discovery: Insights Into Brain- Based Disorders: For Teachers by Teachers (WB9 WC1) Presenters Gloria Stuart Frontier Community Services 292 Mt. View Drive Homer,, AK Phone: (907) Fax: (907) Terra Good Anchorage School District FAS 101 Disabilities of Discovery: Insights Into Brain- Based Disorders WB10 WC2) Presenters Tammy Keech Northwest Resource Center Phone: (907) Fax: (907) Aileen McInnis Northwest Resource Center 840 K Street, Suite 101 Anchorage, AK Phone: (907) Fax: (907) amcinnis@nwresource.org Abstract One of the original goals established for Alaska s Comprehensive Fetal Alcohol Syndrome (FAS) Project was to improve lifelong outcomes for individuals with FASD through improved services. To accomplish this goal, training of all appropriate service providers was critical. During the past 3 years, 42 dedicated individuals have become FASD 101 Certified Trainers, through the Office of FAS. These trainers are certified to use the developed curriculum FASD 101, Disabilities of Discovery: Insights into Brain-Based Disorders. Through this training, we can being to change the paradigm related to this disability (brain damage vs. behavior problem), and it can begin the process of systems changes within our existing service delivery systems- education, developmental disabilities, juvenile justice, child protection, health care, public assistance, vocational rehabilitation, substance abuse treatment, mental health and corrections to name a few. If we expect to improve how services are provided to this population of 174 FAS Workshop.indb /20/ :24:14 PM

2 Alaska s FAS Summit 2005 individuals and their families, change needs to occur within these existing service systems. We are very excited about this program and believe that by developing local community-based expertise, we can more effectively train service providers across the state and across disciplines, which will begin the process of changing the paradigm of thinking about this disability. This, in turn, will change how our systems approach their work with individuals affected by prenatal exposure to alcohol. For additional information contact Jennifer Pendergraft at the DHSS Office of FAS, , fas@heatlth.state.ak.us., or visit our website to find a trainer near you. Notes: 175 FAS Workshop.indb /20/ :24:14 PM

FAS 101 For teachers by teachers (WB9 WC2): FASD 101 Disabilities of Discovery: Insights into Brain-Based Disorders Developed by: The Family and Youth Services Training Academy with a grant from the

3 FAS 101 For teachers by teachers (WB9 WC2): FASD 101 Disabilities of Discovery: Insights into Brain-Based Disorders Developed by: The Family and Youth Services Training Academy with a grant from the DHSS Office of FAS with funding from the U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration Grant #5 UD1 SP FASD 101:1 Objectives! Learn about FASD including terminology; facts; and effects on the body and brain! Understand primary and secondary disabilities resulting from FASD! Understand the purpose of a diagnosis! Discuss Alaska s resources and approach FASD 101:2 FASD Information!Terminology!Key Facts about FASD!Latest FASD data in Alaska!FASD and the Brain FASD 101:3 176 FAS Workshop.indb /20/ :24:15 PM

4 Alaska s FAS Summit 2005 What is FAS?! Medical diagnosis for a permanent condition caused by prenatal alcohol exposure "Growth deficiency! Head, height, weight "Special pattern facial features "Signs of central nervous system damage FASD 101:4 Terminology FASD FAS FAE ARND Fetal Alcohol Spectrum Disorders is an umbrella term used to describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. Medical diagnosis that is a subset of FASD. Outdated term used to describe individuals who had problems associated with prenatal alcohol exposure, but did not have enough of the outward signs to be eligible for the medical diagnosis of FAS. Has been widely used to describe the specific damage that prenatal alcohol exposure can have on the central nervous system. What other terms have you heard? FASD 101:4a False Beliefs About FASD # FAS is a childhood disorder, people outgrow it. # People with FAS have a more severe condition than others with prenatal exposure to alcohol. # Behavior problems associated with FAS and FAE are the result of poor parenting. # Mothers of children with FASD are young, careless and are not concerned about their substance abuse and its effects on their developing baby. FASD 101:5 177 FAS Workshop.indb /20/ :24:15 PM

5 FAS 101 For teachers by teachers (WB9 WC2): False Beliefs About FASD # Nothing works for people with FASD. # FASD can be passed on genetically. # Children are negatively affected by alcohol only if a mother drinks early in her pregnancy. # FASD is specific to certain races or communities. FASD 101:6 Current Research in Alaska! 16 teams conducting ongoing diagnoses in the State of Alaska since 1999! 614 diagnoses submitted to date FASD 101:7 FASD Risk in Alaska For every 1,000 births in Alaska, 16.3 children are at risk for problems associated with FASD. Of those 16.3, 1.5 will meet the full case definition of FAS. That means more than 163 children are born each year in Alaska at risk. FASD 101:7a State of Alaska, DHSS, Section of Epidemiology, July FAS Workshop.indb /20/ :24:16 PM

6 Alaska s FAS Summit 2005 Further Research Findings! Of all the diagnoses with evidence of organic brain damage, 90% do not have accompanying facial features. FASD 101:7b Summary Report of the Alaska Multidisciplinary FASD Diagnostic Team Data 9/1/04 (Data gathered ) It is not the face that needs the services. (Streissguth & O Malley, 2000, p. 178) FASD 101:7c Why Know About FASD?! Alcohol abuse in Alaska cost more than $249 million per year*.! Over 20,000 Alaskan women of childbearing age have acknowledged that they are heavy drinkers. (DHSS, 1997)! Alaska has the highest KNOWN incidence of FAS in the US. (State of Alaska, 2000) FASD 101:8 *Alaska s Greatest Hidden Tax: The Negative consequences of Alcohol and Other Drug Abuse and Dependence, Alaska Advisory Board on Alcoholism & Drug Abuse, FAS Workshop.indb /20/ :24:16 PM

7 FAS 101 For teachers by teachers (WB9 WC2): FASD Around the World! FAS was first identified in France in 1968.! Current surveillance efforts are underway in Russia, as well as prevention efforts all over the world.! South Africa s wine region has the highest document rate of FAS (40.6 per 1,000) in the world. FASD 101:9 Alcohol Is Accepted! Alcohol is a traditional part of cultures everywhere.! Alcohol is used to celebrate, relax, and socialize.! Many people have strong feelings about alcohol. FASD 101:9a How does drinking alcohol during pregnancy affect a developing fetus? FASD 101: FAS Workshop.indb /20/ :24:17 PM

8 Alaska s FAS Summit 2005 Alcohol Is a Teratogen! A teratogen is a substance that causes developmental malformations.! Alcohol has a direct toxic effect on cells and can produce cell death, thereby causing certain areas of the brain to actually contain fewer cells than normal. (Streissguth, 1997, p. 58) FASD 101:11 Factors That Impact a Fetus! When and how much a mother drinks while pregnant! Mother s genetic make-up! Baby s genetic make-up FASD 101:12 Fetal Brain Development Begins Very Early FASD 101:12a 181 FAS Workshop.indb /20/ :24:17 PM

Alcohol pregnancy, and the fetal alcohol syndrome. (slide lecture series, 2nd ed.

9 FAS 101 For teachers by teachers (WB9 WC2): Different organs are more vulnerable during different phases of pregnancy FASD 101:12b Genetics Plays a Role Streissguth, A.P. & Little, R.E. (1994). Alcohol pregnancy, and the fetal alcohol syndrome. (slide lecture series, 2nd ed.) Hanover, NH: Dartmouth Medical School, Project Cork. (Reproduced by permission of Dartmouth Medical School). FASD 101:12c Animal Research FASD 101:12d 182 FAS Workshop.indb /20/ :24:18 PM

Alaska s FAS Summit 2005 Alcohol and the Brain Children with FASD have a whole brain disorder that compounds their ability to communicate their understanding of the world. (Kapp, O Malley, 2001, p.

10 Alaska s FAS Summit 2005 Alcohol and the Brain Children with FASD have a whole brain disorder that compounds their ability to communicate their understanding of the world. (Kapp, O Malley, 2001, p. 7) FASD 101:13 Subtle to Severe Problems " Alcohol can cause physical conditions and birth defects " More likely cause or first cause - Central Nervous System (CNS) problems. Jones, Dr. K.L., Department of Pediatrics University Hospital. University of California at San Diego. (Reproduced by permission of Dr. Jones).. FASD 101:14 Key Areas of The Brain Cerebellum plays a role in motor coordination, behavior, and memory. FASD 101: FAS Workshop.indb /20/ :24:18 PM

FAS 101 For teachers by teachers (WB9 WC2): Key Areas of The Brain Basal Ganglia Involved in monitoring the progress of movement and affects spatial memory.

FASD 101:16 Key Areas of The Brain Corpus Callosum Passes information from the left brain (rules, logic) to the right brain (impulse, feelings) and vice versa.

11 FAS 101 For teachers by teachers (WB9 WC2): Key Areas of The Brain Basal Ganglia Involved in monitoring the progress of movement and affects spatial memory. It may also be related to the ability to perceive time. FASD 101:16 Key Areas of The Brain Corpus Callosum Passes information from the left brain (rules, logic) to the right brain (impulse, feelings) and vice versa. The Corpus Callosum in an individual with FASD might be smaller than normal, thicker, and in some cases nonexistent. FASD 101:17 Corpus Callosum Damage 14-year old control subject with a normal corpus callosum 12-year old with FAS and a thin corpus callosum 14-year with FAS and agenosis (absence due to abnormal development) of the corpus callosum (Alcohol Health and Research World 18, #1, 1994) FASD 101: FAS Workshop.indb /20/ :24:19 PM

FASD 101:19 Range of Possible Damage Miller-Fenwick, Inc. (1994). Used with permission.

12 Alaska s FAS Summit 2005 Key Areas of The Brain Hippocampus Part of the limbic system, which is involved in emotional aspects of survival and plays a role in memory. FASD 101:19 Range of Possible Damage Miller-Fenwick, Inc. (1994). Used with permission. FASD 101:20 Missing Brain Matter FASD 101: FAS Workshop.indb /20/ :24:20 PM

13 FAS 101 For teachers by teachers (WB9 WC2): Review: FASD Top Five 1. There is no proven safe amount of alcohol use during pregnancy. 2. Alcohol can damage the fetus at all stages. 3. People with FASD are everywhere and in all systems of care (diagnosed or not). 4. FASD can occur in all communities. 5. People with the greatest difficulty are often the ones least recognizable. FASD 101:22 FASD Disabilities!Primary Disabilities!Secondary Disabilities FASD 101:23 Primary Disabilities! Processing deficits: " Managing incoming sensory information " Sleeping and eating! Cognition and learning: " Visual spatial skills, learning, memory " Speed of central processing of information " Executive functioning! Speech and language FASD 101: FAS Workshop.indb /20/ :24:20 PM

14 Alaska s FAS Summit 2005 Processing Differences! Input! Integration! Memory! Output FASD 101:25 Processing Deficits! Abstract reasoning! Generalizing information and rules! Memory deficits! Time management! Judgment skills! Socialization and independence FASD 101:26 Abstract Reasoning! Missing meaning, humor, and insight in conversations FASD 101:26a 187 FAS Workshop.indb /20/ :24:21 PM

Thinking about the cause and effect of consequences!

15 FAS 101 For teachers by teachers (WB9 WC2): Abstract Reasoning FASD 101: 26b:B&R7 Abstract Reasoning! Thinking about the cause and effect of consequences! Predicting an outcome FASD 101: 26c Abstract Reasoning FASD 101: 26d:J2 188 FAS Workshop.indb /20/ :24:22 PM

16 Alaska s FAS Summit 2005 Generalizing Information and Rules! Difficulty forming links! Inferential thinking FASD 101: 26e Generalizing Information and Rules FASD 101: 26f:B&R5 Memory Deficits! Poor short term auditory memory! Slow auditory pace! Difficulty getting information out of long term memory FASD 101: 26g 189 FAS Workshop.indb /20/ :24:22 PM

17 FAS 101 For teachers by teachers (WB9 WC2): Memory Deficits FASD 101: 26h:T7 Time Management! Sleeping / eating cycles! Problems with transition! Monthly budgeting! Making and keeping appointments! Employment FASD 101: 26i Time Management FASD 101: 26j:J&K4 190 FAS Workshop.indb /20/ :24:22 PM

18 Alaska s FAS Summit 2005 Judgment Skills! Act before they think! May seem noncompliant and willful when in fact they are simply unable FASD 101: 26k Judgment Skills FASD 101: 26l:C3 Socialization and Independence! Not be able to rely on their own skills! May have life-long needs for support and supervision FASD 101: 26m 191 FAS Workshop.indb /20/ :24:23 PM

FAS 101 For teachers by teachers (WB9 WC2): Socialization and Independence FASD 101: 26n:B&R Ages and Stages! Dysmaturity socially and developmentally younger than their chronological age.

19 FAS 101 For teachers by teachers (WB9 WC2): Socialization and Independence FASD 101: 26n:B&R Ages and Stages! Dysmaturity socially and developmentally younger than their chronological age.! People with FAS often can talk the talk but can t walk the walk. FASD 101: 27 Secondary Disabilities! Disabilities that a person is not born with and are preventable with the right support, interventions, and accommodations. FASD 101: FAS Workshop.indb /20/ :24:23 PM

Alaska s FAS Summit 2005 Secondary Disabilities! Mental health issues 90%! Disrupted school experience- 60%! Trouble with the law 60%! Confinement - 50%! Inappropriate sexual behavior 49 %!

20 Alaska s FAS Summit 2005 Secondary Disabilities! Mental health issues 90%! Disrupted school experience- 60%! Trouble with the law 60%! Confinement - 50%! Inappropriate sexual behavior 49 %! Alcohol and drug problems 35% (Streissguth, Barr, Kogan and Bookstein, 1996) FASD 101: 29 Disrupted School Experience FASD 101: 29a:T8 Secondary Disabilities! Other Concerns "Secondary disabilities are more prevalent for individuals diagnosed FAE/ARBD than for individuals with FAS. "Secondary disabilities are more common for affected individuals with higher IQs. FASD 101: FAS Workshop.indb /20/ :24:24 PM

21 FAS 101 For teachers by teachers (WB9 WC2): Secondary Characteristics! Fatigue, frustration! Anxiety, fearfulness! Rigid, resistant, argumentative! Flat affect, appear to not care, shutdown, lie! Poor self concept, feelings of failure and low self esteem! Isolation fewer and fewer friends! Aggressive FASD 101: 31 Protective Factors! Living in a stable nurturing home for most of one s life - i.e. over 72% of the time! FAS diagnosis before the age of 6! Not a victim of violence! Being found eligible for DD services! FAS diagnosis (Streissguth, Barr, Kogan and Bookstein, 1996) FASD 101: 32 FASD: So what do we do? The first step to individual success is: Quality Diagnosis A diagnosis is a road map. FASD 101: FAS Workshop.indb /20/ :24:24 PM

Alaska s FAS Summit 2005 Diagnosing FAS Diagnostic Features:!Small eye opening!indistinct philtrum (groove between nose and upper lip)!small head circumference!

22 Alaska s FAS Summit 2005 Diagnosing FAS Diagnostic Features:!Small eye opening!indistinct philtrum (groove between nose and upper lip)!small head circumference!thin upper lip Reprinted from the 10 th Special Report to Congress on Alcohol and Health, NIAAA, 2000 FASD 101: 34 Diagnosing FAS Associated Features:!epicanthal folds!minor ear anomalies!flat midface!short nose!low nasal bridge Photo from the personal collection of Maureen Harwood. Used with family permission. FASD 101: 35 Diagnosing FAS in Alaska! Alaska follows a diagnostic model developed at the University of Washington called The Four Digit Code! The four digit code is a comprehensive assessment involving the following professionals: " Physician " Parent navigator " Occupational and/or physical therapist " Clinical and/or school psychologist " Speech and language pathologist FASD 101: FAS Workshop.indb /20/ :24:25 PM

23 FAS 101 For teachers by teachers (WB9 WC2): FAS Assessment FASD 101: 36a:T The Value of a Diagnosis; Reduced Secondary Disabilities From the personal collection of Mary Lou C. Used with family permission FASD 101: 37 Prenatal alcohol exposure causes brain damage. While this brain damage can t be undone, people can grow, improve, and be successful. Dan Dubovsky, 2004 FASD 101: FAS Workshop.indb /20/ :24:25 PM

Alaska s FAS Summit 2005 Common Misinterpretations Behavior Non-compliance Makes same mistakes Often late Out of seat behavior Misreading #Willful misconduct #Stubborn #Attention Seeking

24 Alaska s FAS Summit 2005 Common Misinterpretations Behavior Non-compliance Makes same mistakes Often late Out of seat behavior Misreading #Willful misconduct #Stubborn #Attention Seeking #Manipulative #Willful #Lazy #Poor parenting #Willful Pest Correct Interpretation "Difficulty translating verbal directions "Doesn t understand "Cannot link cause and effect "Time "Organization "Sensory integration Deb Evensen used with permission FASD 101: 39 Misinterpretations FASD 101: 39a:T4 Reframe Behavior Interventions If behaviors are believed to be willful, intentional, or the result of emotional problems If behaviors are understood as reflecting brain differences Then interventions focus on changing behaviors. Then interventions focus on changing environments to prevent frustration and provide support. FASD 101: FAS Workshop.indb /20/ :24:26 PM

FAS 101 For teachers by teachers (WB9 WC2): Assessments Help Interventions FASD 101: 40a:T2 Try Changing How You Do Things! Give people with FASD longer to answer, develop, and achieve.

25 FAS 101 For teachers by teachers (WB9 WC2): Assessments Help Interventions FASD 101: 40a:T2 Try Changing How You Do Things! Give people with FASD longer to answer, develop, and achieve.! Reteach skills in every environment they will be used don t assume.! Think differently use a bouncing chair.! Move from what s wrong with them to what is going on for them. FASD 101: 41 Keys To Working With People With FASD! Modify the environment.! Modify expectations.! Think younger or think stage not age.! Think perpetual innocence.! Make the world make sense.! Rethink, reteach, respect. FASD 101: FAS Workshop.indb /20/ :24:26 PM

26 Alaska s FAS Summit 2005 Keys To Working With People With FASD! Be concrete and specific.! Keep things simple.! Repeat directions, rules, etc.! Have a routine and be consistent.! Use structure. FASD 101: 43 Keys to Working With People With FASD! Adjust expectations to reflect the reality of the child s needs and capabilities.! Think cognitive wheelchair.! Be an interpreter, not an interrogator.! Be an investigator, not a judge. FASD 101: 44 Burnout on Both Sides of the Relationship People with FASD Feel it is better to be bad than look stupid Tired and anxious all the time Chronically fail Experienced a life-long poor fit Caregivers Consistent inconsistency in their child Negative feedback from others Have the wrong expectations for their child FASD 101: FAS Workshop.indb /20/ :24:27 PM

FAS 101 For teachers by teachers (WB9 WC2): Avoiding Burnout! Remember people with FASD are not being bad. They have brain damage.! Look for resources, ask questions, ask for help.

27 FAS 101 For teachers by teachers (WB9 WC2): Avoiding Burnout! Remember people with FASD are not being bad. They have brain damage.! Look for resources, ask questions, ask for help.! Remember your strengths and the strengths of the individual with FASD.! Admit your limits and theirs.! Plan for when you both need breaks.! Stick to your plan! FASD 101: 46 See People As Mysteries! Not problems or people with problems.! Remember that expectations have to be realistic and appropriate to each person with FASD and not a generalization about FASD. FASD 101: 47a Think of What It Feels Like to Be A Little Out Of Step Tom Soucek, photographer. Reproduced by permission of Alaska Stock Photo,Jeff Schultz copyright owner. ( Slide 73 State of AK. Alaska Stock Photo. Soucek, T. In Step. Digitally manipulated and used with permission. FASD 101: 47b 200 FAS Workshop.indb /20/ :24:27 PM

Alaska s FAS Summit 2005 Resources www.fas.alaska.

28 Alaska s FAS Summit 2005 Resources FASD 101: 48:D Notes 201 FAS Workshop.indb /20/ :24:27 PM

FASD Fetal Alcohol Spectrum Disorder

FAS pfas ARND Fetal Alcohol Syndrome partial Fetal Alcohol Syndrome Alcohol Related Neurodevelopment Disorder FASD Fetal Alcohol Spectrum Disorder ARBD Alcohol Related Birth Defects #1 cause of birth defects