FETAL ALCOHOL SPECTRUM DISORDERS (FASD) WHAT EVERY SCHOOL NURSE SHOULD KNOW

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1 FETAL ALCOHOL SPECTRUM DISORDERS (FASD) WHAT EVERY SCHOOL NURSE SHOULD KNOW Colorado Association of School Nurses 2018 State Conference Heather Hotchkiss, MSW Principal Brain Injury Specialist Colorado Department of Education Nov. 3, 2018

2 Vision All students in Colorado will become educated and productive citizens capable of succeeding in society, the workforce, and life. Mission The mission of the CDE is to ensure that all students are prepared for success in society, work, and life by providing excellent leadership, service, and support to schools, districts, and communities across the state. 2

3 TYPES OF BRAIN INJURY OR IMPACT Brain Impact/Injury Acquired Brain Injury (acquired after birth) Congenital (before birth/pre-natal) Traumatic Non-Traumatic e.g., Fetal Alcohol Spectrum Disorder, etc. Similar impacts and interventions

4 THE HIDDEN DISABILITY Many times, youth will present as higher functioning 4 Morgan Fawcett on living with FASD - e=player_detailpage

5 RED FLAGS History of Maternal substance use Slow speech development Trouble following directions Tantrums, other acting out Easily distracted Doesn t relate to same-age children Trouble with change or transition Multiple or Changing Diagnoses

6 ALCOHOL Causes the Most Damage of All the Teratogens

7 CAUSE OF FASD The sole cause of FASD is the fetus being exposed to alcohol during the pregnancy. Alcohol is a teratogen: A drug or other substance capable of interfering with the development of a fetus, causing birth defects. 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, 1996

8 CAUSE OF FASD All alcoholic beverages are harmful. Binge drinking is especially harmful.* While it s true that not every woman who drinks during pregnancy will have a child with FASD, that does not mean that these disorders are rare or random. Any time a pregnant woman consumes alcohol, it becomes possible that her baby will have FASD. * Binge = 4 or more standard drinks on one occasion for women

9 WHAT S A STANDARD DRINK?

10 WHAT S A STANDARD DRINK? In recent research, frequent drinkers and the majority of women reported drinking larger-than-standard drinks. Daily drinkers were consuming drinks that were anywhere from three to six times the size of a standard drink. The majority of drinkers underestimated the number of fluid ounces they were consuming by about 30%.

11 EVERY INDIVIDUAL IS DIFFERENT Some Have Many Effects, Some Have Fewer or None

12 DIAGNOSES UNDER FASD UMBRELLA Fetal Alcohol Syndrome (FAS) Partial Fetal Alcohol Syndrome (pfas) Static Encephalopathy ND-PAE (DSM 5 definition) Invisible or Hidden Disorders Alcohol Related Birth Defects (ARBD) Alcohol Related Neurodevelopmental Disorder (ARND)

13 FAS FASD Full-blown Fetal Alcohol Syndrome (FAS) represents only the tip of the iceberg relative to all alcohol-related effects or Fetal Alcohol Spectrum Disorder (FASD). Dr. Pamela Gillen

14 ALCOHOL CAN CAUSE IRREVERSIBLE DAMAGE BEFORE A MOTHER KNOWS SHE IS PREGNANT

15 TIMELINE OF FETAL DEVELOPMENT Week Central Nervous System Heart Arms Legs Ears Eyes Teeth Palate External Genitalia Missed Period Noted Typical time of first prenatal visit

17 MORE FASD PREVALENCE RATES Studies show: NEARLY 30% of children in the foster or adoption system have FASD. -Dr. Ira J. Chasnoff, 2016 NEARLY 40% of adults on Chicago s South Side, participating in psychiatric treatment -Dr. Carl Bell,

18 FREQUENT PHYSICAL CHARACTERISTICS Poor eye-hand coordination Poor muscle tone Unusual sensitivity to environment (sensory defensiveness) Dyslexia/reading issues Lower IQ Language delays

19 IQ DISTRIBUTIONS IN FAS & FAE (STREISSGUTH, 1996) Streissguth, 1996.

20 DYSLEXIA Disabilities Academic Information processing deficit Motor difficulties Speech/language disorders Patterning problems Attention Deficit Disorder (ADD) Bi-polar disorder

22 COMMON MIS-DIAGNOSES Hyperactivity & ADHD (e.g., Coles et al., 1997; Mattson & Riley, 2000; Nanson & Hiscock, 1991; Kodituwakku et al., 1995; Connor et al., 1999). ) Depression (e.g., Famy et al., 1998) Conduct Disorder, Oppositional Defiant Disorder, Behavior Problems (e.g., Fast et al., 1999; Mattson & Riley, 1998) Social Skill Deficits (e.g., Thomas et al., 1998) Alcohol & Substance Abuse (Famy et al., 1998) Bi-polar Disorder (e.g., Famy et al., 1998)

23 DuldDA7k1pnjI1SHzq5p6_Ka-PwJ

24 GIVING VOICE TO A HIDDEN POPULATION A woman gives birth to a child; no one told her that alcohol consumption during pregnancy could harm the baby. The stigma lasts a lifetime. A student is repeatedly kicked out of various classrooms/schools for noncompliance; he never means to be noncompliant, his lack of understanding is simply never recognized. He drops out in 10 th grade. A teen-aged girl doesn t receive appropriate screening for alcohol use during her pregnancy; her child is removed when she s identified with a substance use disorder, and her child is later found to have an FASD. A young man repeatedly loses jobs because he can t follow orders; he ends up homeless and cycles repeatedly through the social service system and is jailed several times. 24

25 Building Blocks of Brain Development Overall Functioning Achievement/ Cognitive Ability/ Reasoning Higher Order Social Emotional Competency Executive Functions Intermediate Language Learning Visual-Spatial Fundamental Memory Processing Speed Attention Inhibition Sensory- Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

26 Building Blocks of Brain Development Overall Functioning Higher Order Intermediate Language Social Emotional Competency Achievement/ Cognitive Ability/ Reasoning Learning Executive Functions Visual-Spatial Complexities Increase with Maturation Fundamental Memory Processing Speed Attention Inhibition Sensory- Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

Building Blocks of Brain Development Overall Functioning Higher Order Social Emotional Competency

flexibility Reasoning/Judgment Intermediate Language Learning Visual-Spatial Fundamental Memory

27 Building Blocks of Brain Development Overall Functioning Higher Order Social Emotional Competency Achievement/ Cognitive Ability/ Reasoning Executive Functions Initiation Planning Organization Mental flexibility Reasoning/Judgment Intermediate Language Learning Visual-Spatial Fundamental Memory Processing Speed Attention Inhibition Sensory- Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

28 Building Blocks of Brain Development Productive Citizen Overall Functioning Higher Order Social Emotional Competency Achievement/ Cognitive Ability/ Reasoning Executive Functions Complexities Increase with Brain Maturation Intermediate Language Learning Visual-Spatial Fundamental Memory Processing Speed Attention Inhibition Sensory- Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

29 Social Emotional Competency Achievement/ Cognitive Ability/ Reasoning Executive Functions Language Learning Visual-Spatial Memory Processing Speed Attention Inhibition Sensory- Motor Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

30 FOUNDATIONAL BUILDING BLOCKS Attention: The ability to sustain focus on the information necessary for learning or completing tasks Inhibition: The ability to inhibit, block or hold back an impulse. Processing Speed: How quickly information is received, processed, and/or outputted. Memory: The mental ability to store and retrieve words, facts, procedures, skills, concepts and experiences. Sensory Processing: Perceiving and responding to what is seen, heard, smelled, tasted, felt and touched.

31 INTERMEDIATE BUILDING BLOCKS Language: Receptive: The ability to understand language. Expressive: The ability to express one s thoughts and feelings into words and sentences. Social Pragmatic: The verbal and nonverbal rules of social language and interactions. Learning: The ability to learn new concepts and information. Visual-Spatial: The ability to generate, retain, retrieve and transform wellstructured visual images.

32 HIGHER ORDER BUILDING BLOCKS Social Emotional Competency: The awareness of social issues and one s emotional status. Behavioral self-regulation, control and selfmonitoring are also part of this domain. Executive Function: deliberate and controlled mental functioning Planning Organization Initiation Mental Flexibility Reasoning

33 HALLMARKS SPECIFIC TO BRAIN INJURY & FASD

34 Building Blocks of Brain Development Overall Functioning Achievement/ Cognitive Ability/ Reasoning Higher Order Social Emotional Competency Executive Functions Intermediate Language Learning Visual-Spatial Fundamental Memory Processing Speed Attention Inhibition Sensory- Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

35 UNEVENNESS The hallmark of a brain injury on a child s performance is an unevenness in abilities across different settings, over time, and across different content areas. Examples: Across domains a 10 year old may have typical abilities in fine and gross motor areas but have the social-emotional regulation of a 5 yr. old. Within domains Average abilities in expressive language and difficulties with receptive language Across time a student knows material on Tuesday but cannot retrieve the same information later that same week Across Environments can exhibit a behavior or routine in one environment (at home) but not another environment (school) Can produce invalid/poor results on standardized assessments

36 UNEVENNESS

FATIGUE & ENDURANCE The primary source of fatigue is cognitive fatigue and is the direct result of disrupted pathways in the brain. Thinking, movement, and speech may take longer and be less accurate.

37 FATIGUE & ENDURANCE The primary source of fatigue is cognitive fatigue and is the direct result of disrupted pathways in the brain. Thinking, movement, and speech may take longer and be less accurate. The brain tires much more quickly and is less able to process the stimulation. Strategies: Incorporate brief breaks throughout the day to rest or quiet the brain Reduce stimulation in the environment

TRANSITION ISSUES Transitions can be: Unpredictable Unexpected (fire drills) Unfamiliar Many of the Building Blocks are challenged during transitions Attention too many grabbers

38 TRANSITION ISSUES Transitions can be: Unpredictable Unexpected (fire drills) Unfamiliar Many of the Building Blocks are challenged during transitions Attention too many grabbers Processing Speed slower shift Sensory overload changes in noise level Visual-spatial crowded or chaotic surroundings Mental flexibility transition, may be outside of routines Just to name a few

39 TRANSITION CONSIDERATIONS Transition Planning and Preparation - Practice! Routines make life easier and limit the amount of brain power needed Activity to activity warnings, routines, schedule and practice transitions, visual/physical cues, movement from one area to another Classroom to classroom (area to area) visual/physical cues, routines, build in time for wrap up, extra time between stations, create similar structures across classrooms/areas Grade to grade transition meetings, pair with adult/peer, visit the classroom and meet the teacher, walk out new schedule School to school practice the bus ride, orient to the classroom/building, meet new administrators, teachers, and staff

40 WHAT QUESTIONS DO YOU HAVE?

41 SPECIAL EDUCATION CONSIDERATIONS

42 TYPES OF BRAIN INJURY OR IMPACT & SPECIAL EDUCATION CONSIDERATIONS Brain Impact/Injury Acquired Brain Injury (acquired after birth) Traumatic Non-Traumatic Congenital (before birth/pre-natal) TBI OHI OHI e.g., Fetal Alcohol Spectrum Disorder, etc. Similar impacts and interventions

43 Building Blocks of Brain Development ASSESSMENTS Overall Functioning Standardized Testing Achievement Higher Order BASC-2 Social- Emotional BRIEF-2 Executive Functions Intermediate CELF-5 Language WJ-3 Learning BEERY VMI Visual-Spatial Fundamental WRAML-2 Memory WISC-V Processing Speed NEPSY-2 Attention STROOP Inhibition OT/PT Consult Sensory-Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee,

44 Building Blocks of Brain Development STRATEGIES/INTERVENTIONS Overall Functioning Higher Order Intermediate Role Play Language Why Try Social- Emotional Reading- Writing-Math Achievement Chunking Learning Get Ready- Do-Done Executive Functions Planners Visual-Spatial Fundamental Mnemonics Memory Extra time Processing Speed How Does Your Engine Run? Attention Stop-Relax- Think Inhibition Weighted Vest Sensory-Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee,

45 Building Blocks of Brain Development Overall Functioning Higher Order Intermediate Fundamental WRAML-2 Memory Mnemonics Memory Language CELF-5 Language Role Play Processing Extra WISC-V time Speed Processing Speed Get BRIEF-2 Ready- Executive Do-Done Functions Executive Executive Functions Functions Reading- Writing-Math Achievement/ Standardized Cognitive Testing Ability/ Reasoning Achievement Learning WJ-3 Learning Chunking How NEPSY-2 Does Your Attention Engine Run? Attention Attention Visual-Spatial BEERY Planners VMI Visual-Spatial OT/PT Sensory- Weighted Consult Motor Vest Social BASC-2 Why Try Emotional Social- Competency Emotional Stop-Relax- STROOP Inhibition Think Inhibition Inhibition Sensory-Motor Sensory-Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

46 SPED CATEGORY OPTIONS Other Health Impaired (OHI) Speech or Language Impairment (SLI) Specific Learning Disability (SLD) Intellectual Disability (ID)/Multiple Disabilities (MD)/Dev. Delay (age specific) Serious Emotional Disability (SED) Other 46

47 OTHER HEALTH IMPAIRED (OHI) Definition: Other Health Impaired (OHI) means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment due to a chronic or acute health problem, including but not limited to asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, leukemia, kidney disease, sickle cell anemia or Tourette syndrome. 47

48 OHI As a result of the child s Other Health Impairment, as described above, the child is prevented from receiving reasonable educational benefit from general education, as evidenced by one or more of the following: 2.08 (7) (a) Limited strength as indicated by an inability to perform typical tasks at school; 2.08 (7) (b) Limited vitality as indicated by an inability to sustain effort or to endure throughout an activity; and/or 2.08 (7) (c) Limited alertness as indicated by an inability to manage and maintain attention, to organize or attend, to prioritize environmental stimuli, including heightened alertness to environmental stimuli that results in limited alertness with respect to the educational environment. 48

49 OTHER HEALTH IMPAIRMENTS NOT MENTIONED IN IDEA S DEFINITION Other health impairments fall under the umbrella of IDEA s disability category besides the ones specifically mentioned in the law. The U.S. Department of Education mentions specific other disorders or conditions that may, in combination with other factors, qualify a child for services under IDEA for example: fetal alcohol syndrome (FAS)/fetal alcohol spectrum disorder (FASD) bipolar disorders, dysphagia (swallowing), and other organic neurological disorders (e.g., non-traumatic brain injury) 49 Source:

50 OHI CONSIDERATIONS Documented Health Condition Evidence of limited strength, vitality, alertness Does it cover everything? Does this best represent what the student needs? 50

51 Building Blocks of Brain Development Overall Functioning Achievement/ Cognitive Ability/ Reasoning Higher Order Social Emotional Competency Executive Functions Intermediate Language Learning Visual-Spatial Fundamental Memory Processing Speed Attention Inhibition Sensory- Motor The Hierarchy of Neurocognitive Functioning - created by Peter Thompson, Ph.D. 2013, adapted from the works of Miller 2007; Reitan and Wolfson 2004; Hale and Fiorello The Building Blocks of Brain Development further adapted by the CO Brain Injury Steering Committee, 2016.

52 SPEECH OR LANGUAGE IMPAIRMENT Definition: A child with a Speech or Language Impairment shall have a communicative disorder which prevents the child from receiving reasonable educational benefit from general education. Receptive and expressive language (oral and written) difficulties including syntax word order, word form, developmental level), semantics (vocabulary, concepts and word finding), and pragmatics (purposes and uses of language); and/or Auditory processing, including sensation (acuity), perception (discrimination, sequencing, analysis and synthesis) association and auditory attention; and/or Deficiency of structure and function of oral peripheral mechanism; and/or Articulation including substitutions, omissions, distortions or additions of sound; and/or Voice, including deviation of respiration, phonation (pitch, intensity, quality), and/or resonance; and/or Fluency, including hesitant speech, stuttering, cluttering and related disorders; and/or Problems in auditory perception such as discrimination and memory. 52

53 SLI CONSIDERATIONS The Speech or Language Impairment, as described above, prevents the child from receiving reasonable benefit from general education as evidenced by one or more of the following criteria: (check all that apply) ECEA 2.08(9)(b) Y/N Y/N Y/N 53 Interference with oral and/or written communication in academic and social interactions in his/her primary language; and/or Demonstration of undesirable or inappropriate behavior as a result of limited communication skills; and/or The inability to communicate without the use of assistive, augmentative/alternative communication devices or systems. Does it cover everything? Does this best represent what the student needs?

54 SPECIFIC LEARNING DISABILITY (SLD) Specific Learning Disability means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell or do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. 54

55 SLD CONSIDERATIONS Considerations for prenatal substance exposure/brain impact: Focus is on literacy and math behavior/mental health is not specifically included Does it cover everything? Does this best represent what the student needs? 55

56 SERIOUS EMOTIONAL DISABILITY Definition: A child with a Serious Emotional Disability shall have emotional or social functioning which prevents the child from receiving reasonable benefit from general education. To be eligible as a child with Serious Emotional Disability, there must be evidence that the child s emotional or social functioning meets one or more of the following criteria: (check all that apply) ECEA 2.08(3)(a) An inability to learn that is not primarily the result of intellectual, sensory, or other health factors; and/or An inability to build or maintain interpersonal relationships, which significantly interfere with the child s social development; and/or Inappropriate types of behavior or feelings under normal circumstances; and/or A general pervasive mood of unhappiness or depression; and/or A tendency to develop physical symptoms or fears associated with personal or school problems

57 SED CONSIDERATIONS Does it cover everything? Does this best represent what the student needs? 57

58 OTHER CATEGORIES? Intellectual Disability (ID)/Multiple Disabilities (MD)/Developmental Delay (age specific) OTHER CONSIDERATIONS: Manifestation Community Based Services Independent Living 58

59 WHAT QUESTIONS DO YOU HAVE?

60 EIGHT MAGIC KEYS: DEVELOPING SUCCESSFUL INTERVENTIONS 1. Concrete 2. Consistent 3. Repetition 4. Routine 5. Simplicity 6. Specific 7. Structure 8. Supervision 8 Magic Keys Video (21 mins) 60

61 61

62 WHAT S NEXT: RESOURCES

65 DOES YOUR DISTRICT/BOCES HAVE A BRAINSTEPS TEAM? Funded by: Brain Injury School Consulting Program STEPS: Strategies Teaching Educators Parents & Students Inter-disciplinary Consultation Team Trained in the Building Blocks of Brain Development For more information go to:

66 BUILDING EXECUTIVE FUNCTIONING IN EVERYDAY LIFE Center on the Developing Child Harvard University ies-guide-enhancing-and-practicing-executivefunction-skills-with-children-from-infancy-toadolescence/

CDE - FASD RESOURCES www.cde.state.co.us/cdesped/fasd.

67 CDE - FASD RESOURCES Webinar Series: FASD Overview Webinar FASD School-Based Strategies Video Modules: 8 Magic Keys Video (21 mins) FASD Fast Fact Brain Injury in Children and Youth A Manual for Educators Prevention PSAs Other Resources

68 COLORADO RESOURCES Illuminate Colorado Colorado Dept. of Education: FASD - Brain Injury in Children and Youth A Manual for Educators CO Kids with Brain Injury

69 NATIONAL RESOURCES SAMHSA-FASD: Centers for Disease Control and Prevention FAS Prevention Team: National Institute on Alcohol Abuse and Alcoholism (NIAAA): National Organization on Fetal Alcohol Syndrome (NOFAS): NOFAS Resource Directory:

70 SUGGESTED VIDEO CLIPS NOFAS Living with FASD A7k1pnjI1SHzq5p6_Ka-PwJ Morgan Fawcett on living with FASD - _detailpage Jasmine Suarez-O'Connor on living with FASD =PLiFZcDuldDA7k1pnjI1SHzq5p6_Ka-PwJ Provincial Outreach Program (POP) for FASD VideoGuide_Resources for Educators

71 WEBSITE RESOURCES CDE TBI: CDE FASD: Colorado Kids Brain Injury Resource Network ( CO Kids Website ): Brain Injury in Youth Supports for School Success Community of Practice Center on the Developing Child: LEARNet - A Problem Solving System for Teachers, Clinicians, Parents, and Students (Brain Injury Association of New York State): Brainline & Brainline Kids -

72 WRAPPING UP What questions do you have? Did you sign up for the list serv? 72

73 Heather Hotchkiss Principal Brain Injury Specialist

Fetal Alcohol Spectrum Disorders (FASD) Webinar

Fetal Alcohol Spectrum Disorders (FASD) Webinar Colorado FASD Commission & Colorado Department of Education Acknowledgements The Colorado Fetal Alcohol Spectrum Disorder Commission The Colorado Department