Supporting children/youth and families with FAS Wendy

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Supporting children/youth and families with FAS

• Wendy Nowicke
• Christy Yee
• Julie Helmer
• Millie Shepherd

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Definitions

• 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

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Definitions

• 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

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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

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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)

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Effects of Alcohol on the Developing Embryo and
Fetus

• 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

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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
  effects
• 3rd Trimester Drinking risk for growth
  retardation and neurological effects

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Facial characteristics of FASDs
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Other possible physical characteristics

• Pre- and Postnatal Growth Retardation
• Microcephaly- decreased head size
• Height and/or weight at or below 10th percentile

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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

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Developmental, Cognitive and Behavioral
Implications of FASD
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Neurocognitive affects of fetal alcohol spectrum
disorders

• 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

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Additional affects of fetal alcohol spectrum
disorders

• 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

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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

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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
  abilities
• Poor comprehension of social rules expectations
• Difficulty predicting or understanding
  consequences of behavior
• Concrete thinkers

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Ages 12-18

• Academic ceiling often reached
• Impulsive, sometimes aggressive, unpredictable,
  or violent behavior
• Difficulty fitting in and maintaining
  friendships

• Hidden disability gives the impression of
  being more capable than they really are which
  puts individuals at risk for mental illnesses and
  secondary disabilities

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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

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Secondary Behavioral Implications throughout the
lifespan

• Irritability, temper tantrums
• Disobedience
• Difficulty following directions
• Decreased number of friends
• Perceived and real lying, stealing,
  disobedience
• 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

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Co-Occurring DisordersSecondary Disabilities
Associated with FASD1996 longitudinal study

• Ann P Streissguth Ph D. Pl
• University of Washington
• Seattle, Washington

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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

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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

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Supporting Children/Youth Affected by FASDs and
their families
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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/
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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

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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.

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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

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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)

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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

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8 Magic Keys Behavioral Strategies Deb Evensen
and Jan Lutke

• Concrete
• Consistency
• Repetition
• Routine

• 5. Simplicity
• 6. Specific
• 7. Structure
• 8. Supervision

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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.

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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
  report.
• Develop relationships with local police
• Make a plan for unexpected interactions with
  police/court system

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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

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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
  strategies

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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

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Techniques to support FASD youth in the school
setting

• 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

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Timeframes

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

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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

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Supporting youth through alternative therapies

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

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• Raising children/youth with FAS
• A Parent perspective

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• Sensory Integration therapy as a cross
  environment support

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Whats Next?

• See Behavior
• Think Sensory

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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.

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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).

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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
  sounds
• 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
  sounds

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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
  disorders
• Children with Substance Abuse issues
• Children with Brain Injuries
• Children with Learning Disabilities.

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Sensory Processing Disorder

• Sensory Processing is the way the nervous system
  receives sensory messages and turns them into
  responses.
• 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

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3 Broad Types of SPD(or why you need an OT!)

• Sensory Modulation Disorder (SMD)
• Sensory-Based Motor Disorder (SBMD)
• Sensory Discrimination Disorder (SDD)

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SMD

• 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)

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SBMD

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

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SDD

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

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SDD Chart
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SDD Chart
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Finding the Sensory Clues
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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.

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BRAIN DAMAGE DYSFUNCTIONAL BEHAVIOR

• 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
152.
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Sensory Processing Concerns

• Feeding Problems
• Poor Muscle Tone
• Poor Habituation
• Poor Sleep-Wake Cycle
• Poor Self Regulation
• Poor Attention

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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

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What the teacher might say

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

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Tools Techniques

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

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Tools Techniques

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

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Tools Techniques

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

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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

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Conclusion

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

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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

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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

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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
  Ayres
• Sensory Integration and the Child by A. Jean
  Ayres, Ph.D

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Good Websites

• www.spdfoundation.net
• specialchildren.about.com
• www.sensoryresources.com

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Other resources

• Nutritional Interventions for Children with FASD
  by Diane Black, Ph.D. (June 2002)
  d.black_at_planet.nl

www.mnadopt.org SAMHSA NOFAS
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Questions?