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Supporting children/youth and families with FAS Wendy


Supporting children/youth and families with FAS Wendy Nowicke Christy Yee Julie Helmer Millie Shepherd * * * * * I WANT TO TAKE YOU BRIEFLY THROUGH THE EVOLUTION OF ... – PowerPoint PPT presentation

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Title: Supporting children/youth and families with FAS Wendy

Supporting children/youth and families with FAS
  • Wendy Nowicke
  • Christy Yee
  • Julie Helmer
  • Millie Shepherd

  • FASDs umbrella term describing range of effects
    that can result from prenatal alcohol
    exposurebut not a diagnostic term
  • Fetal Alcohol Syndrome (FAS) Medical diagnosis,
    usually made by a dysmorphologist, clinical
    geneticist, or developmental pediatrician

  • Prenatal Alcohol Exposure (PAE) Term used by
    some researchers to describe individuals with a
    confirmed history of prenatal alcohol exposure,
    who may or may not meet diagnostic criteria for
    an FASD
  • Fetal Alcohol Effects (FAE) Term previously used
    to describe individuals who meet some, but not
    all of the diagnostic criteria for FAS

Prevalence of FASDs
  • Prevalence of FAS ranges from 0.2 to 1.5 per
    1,000 live births
  • FASDs estimated at 9-10 per 1,000 live births.
  • Some groups have been found to have higher rates
    of FAS/FASDs
  • Disadvantaged groups, some American Indian/Alaska
    Native groups, and other minorities
  • Children in foster care approx (15 per 1000)
  • Youth in juvenile justice system (200 per 1000)
  • CDC reports

Potential effects of prenatal Alcohol Exposure
  • Prenatal exposure to alcohol is harmful to the
    fetus. Can result in
  • Physical malformations
  • Growth problems
  • Abnormal functioning of the central nervous
    system (CNS)

Effects of Alcohol on the Developing Embryo and
  • No known safe amount of alcohol during pregnancy
  • No safe type of alcohol
  • No safe time to drink during pregnancy
  • Alcohol interacts with the developing central
    nervous system through multiple actions

Timing of exposure
  • There are multiple critical periods associated
    with prenatal alcohol exposure
  • 1st Trimester Drinking risk for major
    morphological abnormalities, characteristic
    facial features, growth retardation, and
    neurological effects
  • 2nd Trimester Drinking risk for spontaneous
    abortion, growth retardation, and neurological
  • 3rd Trimester Drinking risk for growth
    retardation and neurological effects

(No Transcript)
Facial characteristics of FASDs
Other possible physical characteristics
  • Pre- and Postnatal Growth Retardation
  • Microcephaly- decreased head size
  • Height and/or weight at or below 10th percentile

Psycho-Social and Cultural Effects
  • Persons with FASDs have lifelong increased health
    care needs.
  • Most severe impact is from functional problems,
    such as
  • Mental health difficulties
  • Disrupted school and job experiences
  • Trouble with the law
  • Difficulties with independent living
  • Substance abuse
  • Problems with parenting

Developmental, Cognitive and Behavioral
Implications of FASD
Neurocognitive affects of fetal alcohol spectrum
  • Evidence indicates that neurocognitive
    deficits of individuals with FASDs may include
  • Verbal learning and memory problems
  • Attention deficits
  • Problems with abstract and practical reasoning
  • Problems with executive functioning

Additional affects of fetal alcohol spectrum
  • Other research with individuals with FASDs has
    explored the areas of
  • Adaptive functioning
  • Deficits in the social domain (e.g., maladaptive
    behaviors, difficulty with social cues,
    indiscriminant social behavior)
  • Secondary disabilities such as psychiatric
    co-morbidity, school/work problems, risk for
    delinquency, and trouble with the law

Infancy and Early Childhood
  • Sensory and regulatory problems
  • Poor habituation
  • Exaggerated startle response
  • Sleep disturbances
  • Poor sleep wake cycle
  • Hypersensitivity to certain food textures
  • Irritability
  • Failure to thrive
  • Nursing difficulties
  • Poor immune function
  • Delays in walking, talking toilet raining

6-11 years
  • Hyperactivity/Distractibility
  • Memory Deficits
  • Impulsivity
  • Continued deficits in neurocognitive functioning
  • Across all domains
  • Visual/spatial abilities
  • Math skills
  • Difficulty with executive function/abstract
  • Poor comprehension of social rules expectations
  • Difficulty predicting or understanding
    consequences of behavior
  • Concrete thinkers

Ages 12-18
  • Academic ceiling often reached
  • Impulsive, sometimes aggressive, unpredictable,
    or violent behavior
  • Difficulty fitting in and maintaining
  • Hidden disability gives the impression of
    being more capable than they really are which
    puts individuals at risk for mental illnesses and
    secondary disabilities

Ages 18
  • Might appear more capable than they are
  • Difficulty with abstract thinking and concepts
  • High risk for victimization
  • Primary Disabilities Include
  • Unpredictable and impulsive behavior
  • Aggressive and sometimes violent behavior
  • Depression/suicidal ideation and attempts

Secondary Behavioral Implications throughout the
  • Irritability, temper tantrums
  • Disobedience
  • Difficulty following directions
  • Decreased number of friends
  • Perceived and real lying, stealing,
  • Increased social difficulties with age
  • Low motivation
  • Involvement in legal system
  • Loss of residential placement
  • Pregnancy/fathering a child
  • Egocentric Understanding and/or responding to
    others feelings and needs

Co-Occurring DisordersSecondary Disabilities
Associated with FASD1996 longitudinal study
  • Ann P Streissguth Ph D. Pl
  • University of Washington
  • Seattle, Washington

Secondary Disabilities
  • Mental Health Problems
  • Experienced by 94 of sample
  • Disrupted School Experience
  • Experienced by 60 of clients over age 12
  • Trouble with the Law
  • Experienced by 14 of clients ages 6-11
  • Experienced by 61 of clients ages 12-20

Secondary Disabilities, cont.
  • Confinement
  • 50 of clients over age 12
  • Experienced more frequently by males (except
    ages 6-11)
  • Inappropriate Sexual Behavior
  • 50 of clients over age 12
  • Alcohol and Drug Problems
  • 30 of clients over age 12

Supporting Children/Youth Affected by FASDs and
their families
Common Misinterpretations
  • What we see
  • Repeatedly making same mistakes
  • What we think
  • Doing it on purpose/manipulative
  • Whats really going on
  • Cant link cause and affect
  • Cant see similarities
  • Cant generalize

FASD Strategies, not SolutionsfromWWW.comeover
.to. /FAS/
More Misinterpretations
  • What we see
  • Poor social judgment
  • What we think
  • Poor parenting
  • Abused child
  • Doing it on purpose
  • Whats really going on
  • Not able to interpret social cues in
    environment. Does not know what to do in
    social situations

What does not work very well.
  • Threats of punishment
  • Removal of privileges or possessions
  • Physical punishment
  • Behavioral plans or contracts
  • Depends on memory and attention to motivators
  • Green, J. (2007). Fetal alcohol spectrum
    disorders Understanding the effects of prenatal
    alcohol exposure and supporting students. Journal
    of School Health, 77, 103-108.

What we know about providing support
  • Early intervention is critical
  • Protective factors include
  • Stable and nurturing home environment
  • Early diagnosis (before age 6)
  • Absence of exposure to violence
  • Few changes in caretaking placements
  • Eligibility for social and educational services
  • Interdisciplinary team of professionals is crucial

Disability Services
  • Individuals with an FASDs might qualify for
  • Supported employment/job coach
  • Transportation
  • Assisted living
  • Respite care
  • Social Security disability benefits
  • Supplemental Security Income (SSI)

Strategies for Infants
  • Swaddling/Calm environment
  • Appropriate sensory input
  • Use larger holes in bottle nipple
  • Face child away during feeding
  • Stimulate child to keep alert during feeding

8 Magic Keys Behavioral Strategies Deb Evensen
and Jan Lutke
  • Concrete
  • Consistency
  • Repetition
  • Routine
  • 5. Simplicity
  • 6. Specific
  • 7. Structure
  • 8. Supervision

Supporting youth within the Legal System
  • Consider a mentor or advocate to navigate the
    legal system.
  • 24/7 support plans
  • Educate judges, probation officers and lawyers
    about FASDs
  • Be aware FASD youth are often victims as well as
    offenders, plan for this.

Supporting youth within the Legal System
  • Be clear and concise re how FASDs affect
    behaviors that resulted in law breaking
  • Consider using consultant to write the court a
  • Develop relationships with local police
  • Make a plan for unexpected interactions with
    police/court system

(No Transcript)
Supporting Youth and Families in the Home setting
  • Use tools to identify times of stress and develop
    plans around them.
  • Some ideas you might consider
  • Planned respite
  • Consult with OT for home/family structure
  • Try to provide same structure child/ youth
    receives at school using same tools when possible

Effective teaching strategies for home and
school settings
  • Supervision
  • Simple and few rules
  • Clear Limits
  • Consistency/Routines
  • Limited choices
  • Emotional rewards
  • Scripts for activities and social situations
  • Allow time for calming and adjusting
  • Safe place driven by comfort and soothing
  • Teach personal boundaries
  • Role play and practice
  • Model the use of feeling words and calming

Recognize Retention Difficulties
  • Short sentences
  • Teach 1 concept at a time
  • Have individual repeat information just heard
  • Teach memory strategies for daily living skills
  • Meal time
  • Medications
  • School time
  • Sleep time
  • Work schedules
  • Concrete language

Techniques to support FASD youth in the school
  • Multi-modality Instruction
  • Use of songs, music or rhythm
  • Sign language to supplement verbal languages
  • Use tape recorders and earphones
  • Use of lists
  • Model Behavior

  • Modify timeframes
  • Increased time to complete activities
  • -Homework, chores, daily activities
  • Increased time for transitions and changes
  • Increased time to process and respond to

Supporting youth and families in the Mental
Health system
  • Modify Counseling to accommodate cognitive
    disabilities Dont expect generalization, teach
    in real environments
  • Must be concrete
  • Pharmacological Interventions
  • Stimulants
  • Antidepressants
  • Neuroleptics
  • Anti-Anxiety

Supporting youth through alternative therapies
  • Biofeedback
  • Relaxation Therapy
  • Meditation
  • Creative art therapy/Yoga/exercise
  • Acupuncture/Acupressure
  • Reiki/energy healing
  • Vitamin/herbal supplements
  • Diet

  • Raising children/youth with FAS
  • A Parent perspective

  • Sensory Integration therapy as a cross
    environment support

Whats Next?
  • See Behavior
  • Think Sensory

What is Sensory Integration?
  • Jean Ayres, Ph.D., OTR, the originator of the
    theory of sensory integration defines it as the
    neurological process that organizes sensation
    from ones own body and from the environment and
    makes it possible to use the body effectively
    within the environment.

Dysfunction of Sensory Integration (DSI)
  • DSI is a malfunction in the brains translation
    of sensation into meaning and action... It is a
    traffic jam in the lower brain. Important
    information that needs four-lane access to the
    thinking centers of the brain, like the awareness
    that youre about to lose your balance, cant get
    through. Other information that should be
    diverted into a parking lot, like the feeling of
    a shirt tag rubbing against your neck, gets full
    attention, creating havoc and confusion. (from
    The impossible Child by Karen Smith).

General Signs of DSI
  • Social and/or emotional problems
  • Physical clumsiness or apparent carelessness
  • Difficulty making transitions from one situation
    to another
  • Delays in speech, language, or motor skills
  • Delays in academic achievement
  • Sensory Integration International
  • Overly sensitive to touch, movement, sights, or
  • Easily distracted
  • Activity level that is unusually high or
    unusually low
  • Impulsive, lacking in self-control
  • Inability to unwind or calm self
  • Poor self concept
  • Under-reactive to touch, movement, sights, or

Other Diagnosis affected by DSI
  • Premature or Low Birth Weight Births
  • Children in foreign orphanages
  • Children who were abused or suffer from Post
    Traumatic Stress
  • Children with Autism or other developmental
  • Children with Substance Abuse issues
  • Children with Brain Injuries
  • Children with Learning Disabilities.

Sensory Processing Disorder
  • Sensory Processing is the way the nervous system
    receives sensory messages and turns them into
  • Disorder exists when sensory signals do not get
    organized into appropriate responses and a
    childs daily routines and activities are
    disrupted as a result.
  • Information from Sensational Kids Hope and Help
    for Children with Sensory Processing Disorder by
    Lucy Jane Miller, Ph.D., OTR

3 Broad Types of SPD(or why you need an OT!)
  • Sensory Modulation Disorder (SMD)
  • Sensory-Based Motor Disorder (SBMD)
  • Sensory Discrimination Disorder (SDD)

  • Problem with turning sensory messages into
    controlled behaviors that match the nature and
    intensity of the sensory information
  • Can be Over-Responsive (a.k.a. sensory defensive)
  • Withdrawn or Aggressive (a.k.a. I get away or you
    get away)
  • Can be Under-Responsive
  • Usually withdrawn
  • Can be Sensory Seeking (a.k.a. crash and burn)

  • Problem with stabilizing, moving, or planning a
    series of movements in response to sensory
  • Dyspraxia
  • Ideation-planning-motor execution-feedback loop
  • Postural Disorder
  • Low normal muscle tone

  • Problem with sensing similarities and differences
    between sensations
  • Can occur in any sensory area vision, hearing,
    touch, taste, smell, proprioceptive, vestibular.

SDD Chart
SDD Chart
Finding the Sensory Clues
What you can do!Be a Sensory Detective
  • Analyze the Behavior
  • Observe
  • Do the behavior yourself
  • Ask what sensory system is problematic
  • Replace behavior by offering an appropriate
    same-sensory activity.

  • Poor Habituation
  • Poor Self-regulation
  • Impulsivity
  • Drowned in stimulation
  • Emotional overload
  • Shuts down
  • Behaves erratically
  • Out of control
  • Acts without thinking
  • Quick to anger

From Ann Streissguth Fetal Alcohol Syndrome, A
Guide for Families and Communities, 1997 page
Sensory Processing Concerns
  • Feeding Problems
  • Poor Muscle Tone
  • Poor Habituation
  • Poor Sleep-Wake Cycle
  • Poor Self Regulation
  • Poor Attention

What the caregiver might say
  • Medically fragile
  • High maintenance (keeping parents on duty 24
    hours a day)
  • Highly manipulative
  • Difficult to manage in public
  • Frequent Temper Tantrums
  • Unafraid of strangers, will leave with anyone

What the teacher might say
  • Aggressive
  • Clumsy
  • Curriculum activities require more planning
  • Walking on egg shells, trying to predict the next
  • Lazy
  • Could if he wanted to, Ive seen him/her have
    great days
  • No Social Skills

Tools Techniques
  • Vision
  • Maximize natural lighting
  • Minimize visual clutter
  • Auditory
  • Add environmental music to help block outside
  • Have headphones available (do not need to be
    plugged in to anything)
  • Minimize wording of directions

Tools Techniques
  • Tactile
  • Make fidgets available
  • Add a tactile component to interactive learning
  • Olfactory
  • Avoid wearing perfume
  • Avoid scented laundry detergents, lotions, and

Tools Techniques
  • Gustatory/Oral Motor
  • Provide age appropriate non-food items to chew
  • Proprioceptive
  • Utilize Sit-N-Move cushions
  • Weighted blankets and vests
  • Allow for movement (give a helping job)
  • Provide Heavy work activities

Tools Techniques
  • Vestibular
  • Provide exercise or stretching breaks
  • Play movement games that include imitation of
    head movements
  • Add a rocking chair
  • Dont take away break times (recess, free play)
    as a consequence

  • Remember to always honor the childs sensory
    processing limitations and work toward broadening
    the sensory processing range within acceptable

Good Books
  • The Out-of-Sync Child Recognizing and Coping
    with Sensory Integration Dysfunction by Carol
    Stock Kranowitz
  • The Out-of-Sync Child Has Fun Activities for
    Kids with Sensory Integration Dysfunction by
    Carol Stock Kranowitz

Good Books
  • Sensational Kids Hope and Help for Children with
    Sensory Processing Disorder by Lucy Jane Miller
    Doris A. Fuller
  • Building Bridges Through Sensory Integration
    Therapy for Children with Autism and Other
    Pervasive Developmental Disorders by Paula
    Aquilla, Shirley Sutton, Ellen Yack

Good Books
  • Raising a Sensory Smart Child The Definitive
    Handbook for Helping Your Child with Sensory
    Integration Issues by Lindsey Biel Nancy Peske
  • Love, Jean Inspiration for Families Living with
    Dysfunction of Sensory Integration by A. Jean
  • Sensory Integration and the Child by A. Jean
    Ayres, Ph.D

Good Websites

Other resources
  • Nutritional Interventions for Children with FASD
    by Diane Black, Ph.D. (June 2002) SAMHSA NOFAS
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