Transcript Slide 1

Caregiving for Children
Prenatally Exposed to Alcohol
Felicia Fago, PhD
Educational Services Director
Positive Education Program
April 10, 2013
The 34th Annual American Adoption Congress International
Conference on Adoption
Presented in Partnership with Adoption Network Cleveland
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“The problems kids cause are not the
causes of their problems.”
Nicholas Long
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Learning Objectives
1. Describe the physical and behavioral
characteristics of children who have been
prenatally exposed to alcohol;
2.Increase awareness about the prevalence of
prenatal alcohol exposure;
3.List interventions and accommodations that
can be used to help children who are at high
risk of prenatal alcohol exposure, and their
families
Historical Perspective
• 1899 English study
• 1968 French study
• 1973 Ulleland, and Smith and Jones
medical studies
• 1989 The Broken Cord by Michael
Dorris
Cited in Streissguth, 1997
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Definition of Fetal Alcohol Syndrome
1. Prenatal and/or postnatal growth
retardation, where weight and/or
length are below the 10th percentile
when corrected for gestational age.
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Definition of Fetal Alcohol Syndrome
2. Evidence of central nervous system
involvement: small head
circumference, tremulousness, poor
coordination, learning disabilities,
developmental delays, mental
retardation, and behavioral
dysfunction, including hyperactivity.
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Definition of Fetal Alcohol Syndrome
3. A characteristic pattern of facial
features and other physical
abnormalities, including small head
circumference, small eye openings
and epicanthal folds, short upturned
nose, low nasal bridge, flat philtrum,
and thin upper lip, among others.
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FAS faces
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Definition of Fetal Alcohol Syndrome
In order to receive the diagnosis of
FAS, at least one characteristic in each
category must be present, as well as
some history of prenatal alcohol
exposure.
Malbin (1993), from Sokol and Clarren (1989)
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Diagnosis
Problems with diagnosis:
• We don’t always know the mother’s
medical history
• Many children don’t exhibit all of the
“required” criteria
• Many are not affected by “full” FAS, but
have hidden brain damage.
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FAS
pFAS
ARND, ARBD
FASD
Static encephalopathy
Neurobehavioral disorder
Sentinel physical findings
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Prevalence of FAS
• Rates per 1000:
– The average cited is from .1 to 3/1000 for
FAS
– May, Gossage, et al. (2009) estimate that
FASD occurs in 2% – 5% of the US
population
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Prevalence - Current Studies
– Italy and Croatia estimate prevalence of FASD up
to 40 / 1000
– S. Africa – approximately 3 million citizens have
FAS, 9 million with FASD (more than are infected
with HIV)
• DeAar study (2002) – 120 per 1000 (12%)
• Aurora study – 8% - 13% of the population
• Kimberly study – 5% of the population
– Children adopted outside the US – 28/60
identified as high risk of prenatal alcohol
exposure; number is higher for former USSR (Fago,
2012)
– Institutionalized children in Russia and
Guatemala at high risk of PAE (Miller, Chan, et al.,2005)
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Prevalence of FAS – Children in Foster Care
 University of Washington study of children in
foster care in Washington state
 Every child in state custody is evaluated for
exposure risk by the Fetal Alcohol Syndrome
Diagnostic and Prevention Network
 Prevalence: 10 to 15 per 1000; up to 15 times
greater than in the general population
 This is done to identify children who need
FASD-related services and to provide
treatment to birth mothers
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Diagnosis of FASD
• URGENT! As social services professional
it is not our responsibility to seek or
“force” an FASD diagnosis on a child or
family
• It is appropriate to help families and
learn to design and use carefully chosen
modifications and accommodations as
you work with a child who presents any
of these symptoms of brain damage,
whatever the cause might be
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Why does this Occur? Teratology
“Teratogens are substances or conditions
that disrupt typical development in
offspring as a result of gestational
exposure and cause birth defects.”
• Alcohol is one of the most damaging
teratogens and causes death,
malformations, growth deficiency, and
functional defects
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Variables in Outcomes
• Dose – response relationship: In
general, an increased dose means
increased manifestation of the disability
• Pattern and timing: When and how
much alcohol was consumed? Chronic,
long term; occasional binges; light daily
use
• Genetic makeup of the parents and child
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Permanent Central Nervous System Dysfunction and
Brain Damage
• Microcephaly – small head circumference
• Head circumference strongly correlated
with brain size
• Approximately half a study group of
adolescents and adults with FAS were 2
SD’s below norms for head circumference
• Some infants born with normal head
circumference do not have the typical
growth spurt, and are microcephalic by
age 12 months
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Permanent Central Nervous System Dysfunction and
Brain Damage
• Small, incomplete development of the
brain, with less wrinkles
• Small or absent corpus callosum, which
connects the left and right sides of the
brain
• 10% of individuals with Fetal Alcohol
Syndrome have seizures
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Permanent CNS and Brain Damage
 IQ
◦ Even if IQ is within the normal range,
individuals often have cognitive or
neuropsychological impairments or problems
with adaptive behaviors which are not
measured on an IQ test
◦ Many of those affected seem to have a
cumulative cognitive deficit – the older they
get, the more they fall behind, the more
disabled they appear
◦ There is an increasing mismatch between
their ability to function, and the academic and
behavioral expectations others have of them
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Neurobehavioral Effects
• Neurobehavioral teratogen: causes
brain damage which modifies behavior
• Smaller doses of alcohol can cause
neurobehavioral effects with no
physical abnormalities visible – the
hidden disability
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Neurobehavioral Effects
• Hyperactivity
• Problems with response inhibition
(inability to learn from mistakes or
punishment)
• Attention deficits
• Lack of inhibition (no stranger anxiety,
lack of modesty)
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Neurobehavioral Effects
• Poor habituation (ability to block out
irrelevant stimuli)
• Perseveration, especially when stressed
(Think of the kid who perseverates on
small issues until they become
unmanageable)
• Gait abnormalities
• Poor fine and gross motor skills
• Motor, social, and language delays
• Poor self-regulation and self-calming skills
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“Co-morbidity”
• Common disorders identified with
FASD:
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Asperger’s Syndrome / Autism Spectrum Disorders
ADHD
Borderline Personality Disorder
Bi-polar Disorder
Conduct Disorder
Depression
Learning Disabilities
Oppositional Defiant Disorder
PTSD
Receptive – Expressive Language Disorders
(Mitchell, 2002)
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Primary and Secondary Disabilities
• Primary disabilities are those that the
child is born with
• Secondary disabilities are those that an
individual is not born with, which can
be lessened via appropriate
interventions
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Primary Disabilities
 Permanent, organic brain damage
 Structural abnormalities of the brain
 Damaged “hard wiring” of the brain
◦ Attention deficits
◦ Damaged frontal lobe and executive function
(planning and organization) skills
◦ Memory problems
◦ Hyperactivity
◦ Processing problems
◦ Sensory Integration Dysfunction
◦ Seizure disorders
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Primary Disabilities
• Average IQ of a child with FAS: 79
• Average IQ of a child with FAE: 90
Streissguth, 1997
• In spite of these scores which fall
within two standard deviations of the
norm, adaptive functioning skills are
not indicative of IQ scores
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Secondary Disabilities: Six Major Areas
• Mental health problems – Having
received treatment for MH issues
including ADHD, depression, suicide
ideation or attempts, panic attacks,
psychosis, behavior / conduct
disorders, sexual acting out
– Ages 6 – 11: 92% (61% attention deficits)
– Ages 12 and older: 95% (>50% depression)
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Secondary Disabilities: Six Major Areas
• Disrupted school experiences – Having
been suspended or expelled, or
dropped out of school
– Ages 6 – 11: 12%
– Ages 12 and older: 61%
– Most frequent learning problems:
attention, incomplete work
– Most frequent behavior problems: peer
interaction, disruption of class
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Secondary Disabilities: Six Major Areas
• Trouble with the law – Having been
charged, convicted, or in trouble with
authorities for criminal behaviors
– Ages 6 – 11: 15%
– Ages 12 and older: 60%
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Secondary Disabilities: Six Major Areas
• Confinement – Having been
imprisoned for a crime, or received
inpatient treatment for mental health,
alcohol, or drug treatment services
– Ages 6 – 11: 9%
– Ages 12 and older: 50%
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Secondary Disabilities: Six Major Areas
• Inappropriate sexual behavior – Having
repeatedly had problems with
inappropriate sexual advances, sexual
touching, promiscuity, exposure,
compulsion, voyeurism, masturbation in
public places, incest, etc.
– Ages 6 – 11: 39%
• Second highest occurring secondary disability
for children
– Ages 12 and older: 49%
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Secondary Disabilities: Six Major Areas
• Alcohol and drug problems – Having
had alcohol or drug abuse problems,
and / or treatment of these problems
– Ages 12 and older: 35%
– Not reported as a problem for children
(Streissguth, Barr, et al., 1996)
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Secondary Disabilities
We know that secondary disabilities occur
and can be ameliorated; as long as we
provide carefully planned, individualized
programming and therapy designed to
teach alternative behaviors. As
professionals who work with troubled
children and their families, it is critical
that we provide this type of
programming for children with FASD and
their families. In this way we can
become a protective factor in the lives of
those with FASD.
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Risk and Protective Factors Associated with
Secondary Disabilities
• Risk factors are associated with higher
rates of occurrence of secondary
disabilities
• Protective factors are associated with
lower rates of occurrence of secondary
disabilities
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Risk Factors
• Having FAE rather than FAS
• Having a higher score on the Fetal
Alcohol Behavior Scale (FABS)
– Designed to measure the behavioral
phenotype (or visible expression of
behaviors) of those with FASD
– Fall under two general headings
• Difficulty modulating incoming stimuli – poor
habituation
• Poor cause-effect reasoning, especially in social
situations
• Having an IQ score above 70
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Protective Factors
• Five environmental factors which can be
modified:
– Living in a stable, nurturing, home
– Not having frequent changes of household
– Not being a victim of violence
– Having received developmental disabilities
services
– Having been diagnosed before age 6
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Protective Factors
• Severity factors which cannot be
modified:
– Having FAS rather than FAE
– Having a lower score on the FABS
(indicating less difficulty with habituation
and more functional cause-effect
reasoning)
– Having an IQ score lower than 70
Streissguth, 1997
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Home Environment
• Uncluttered
• Everything in its place – have a
“minimalized” environment for the
child
• Toys and materials should be handed
out as needed, in a routine fashion
• Nothing hanging from the ceiling
• Minimal visual distractions on the walls
– all visual and auditory stimulation
should have a purpose
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Home Environment
• Background noise should be minimized
as much as possible
• Experiment with soft music to see if it
is calming during structured and nonstructured sessions
• Non-verbal cues should be used as
much as possible to reduce the amount
of verbal interaction
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Home Environment
• Color-code materials using a simple
system (four colors, not twelve!)
• Photos can be used to show where
things belong, even for older children
• Lighting and room colors should not
be over-stimulating
• Keep the room temperature
consistent, and have kids keep t-shirts
or sweatshirts handy to help them
maintain their own comfort zone
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Home Management
• Have a consistent daily schedule and
follow it specifically
• If you must deviate from the schedule,
give the children as much warning as
possible
• Establish a routine for alerting the
children when transitions will take place,
and follow it specifically
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Home Management
• Have very limited, specific rules. Some
children don’t understand the vague
“Keep hands and feet to self”
• Physically outline the child’s personal
space, such as by putting tape on the
floor, or handprints at their seat at the
table
• Consequences should be consistent,
natural and immediately administered
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Home Management
• Though it is important to teach the child
to make choices by providing
opportunities to choose from various
alternatives, limit the number of choices
to avoid over-stimulation and frustration
• Provide two choices, either of which are
OK with the caregiver
• Keep instructions and explanations brief
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Home Management
• Although the children will have varying
ability levels, interact with all at their own
level
• Teach the children to use brief lists and
simple organizers
• When speaking, give enough time for the
child to process
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Home Management
• Give directions using visual and
auditory supports
• Use sequential, repetitive instructional
strategies
• When teaching both behavioral and
cognitive tasks, make it a practice to
teach, re-teach, and re-teach some
more
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Home Management
Many of these children tend to mentally
tire easily, in spite of the fact that they
are overly physically active (ADHD-like)
all day
Be aware of their personal signs of
fatigue and frustration, and help them
recognize this in themselves
Help them develop a plan, and identify a
safe place to re-group and re-organize
themselves, as well as to self-calm
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Home Management
• STRUCTURE, STRUCTURE, STRUCTURE!
Plan and practice routines and rituals.
Once the children learn these they will
feel more relaxed and self-confident
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Specific Strategies for Specific Issues
The following are some frequently
occurring issues for kids with FASD,
and ideas for proactive intervention
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Difficulty translating information from one sense into
appropriate behavior
• Children with FASD are able to repeat a
direction but cannot translate from
words into actions
• Check for understanding differently
• Use multiple modalities and minimal
words
• Use simple timelines with photos and
words
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Ability to talk about it but not do it
• Expressive language has some autisticlike characteristics
• Poor active listening and speaking skills
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Inconsistent mastery of skills
• Recognize that the children may never
be able to memorize facts, and teach
them how to use supports
• Teach all concepts in a rigid structure
• Focus on the 3 R’s, and life and social
skills
• Teach, re-teach, and re-teach again
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Poor / inconsistent memory
• Routine and structure are critical
• Everyone who works with the child
should use the same words and routines
to cue the child
• Must have the structures in place to
help them access their external brain
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Difficulty with generalization
• As much as possible, teach skills in real
settings
• Rules must be re-taught in various
settings
• Role play works if it is practiced along
with practice in real settings
• Causes frustration for parents, teachers
and therapists because we think “they
should know this”
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Difficulty predicting outcomes
 Kids with FASD have difficulty
understanding cause / effect relationships
 They make the same mistake over and
over again, because they don’t make the
connection between event and
consequence
 When you explain the cause of a problem,
it takes the child a long time to process the
information; must be addressed over and
over in a non-punitive manner
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Predicting outcomes
As parents of children with FASD and
professionals who work with families,
we must become very skilled at
recognizing strengths, weaknesses, and
emotions in the children, so that we can
catch them before the meltdown. We
must practice skills when they are doing
well, and then coach them to use the
skills when they are in crisis.
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Difficulty distinguishing relationships
• No boundaries between family, friends,
strangers
• People with FASD are often taken
advantage of as a result
• Difficulty understanding boundaries
concerning “formal” and “informal”
interactions, sexual issues
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Difficulty with abstract concepts
 As early as possible, have kids use real
money in real life situations
 May never be able to memorize math facts
 Need a rigid routine for budgeting
 No concept of time, 12 hour clock
confusing
 Remember this information when you’re
working with parents who may have been
prenatally exposed
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Cognitive delays in spite of “normal” IQ
• Processing of the stimulation in their
world creates a chronic state of chaos for
many children with FASD
• Many have sensory integration issues,
and do benefit from sensory integration
therapy
• Be aware of when sensory overload
occurs
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Identification of feelings
 This process must be taught using direct
instruction
 Repeatedly help the child connect an actual
event to what he is feeling: “Trying to clean your
room is making you feel frustrated”
 We must teach the child to identify a variety of
feelings beyond “happy” and “mad”
 Role play what to do when feeling hurt, etc.
 Practice using an appropriate physical activity to
deal with feelings (taking a walk, listening to
music, etc.)
 Create a Safety Plan
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Difficulty with self-regulation
• Repeated instruction of self-regulation
techniques, such as “Stop and Think”
• Practice self calming routines (“Be a
turtle”, go for a relaxing time out in the
mat area, etc.)
• Warn of transitions the same way every
time, and communicate with parents
for consistency across settings
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“Nesting”
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8 Magic Keys: Developing Successful Interventions for
Students with FAS – Deb Evensen
•
•
•
•
•
•
•
•
Concrete
Consistency
Repetition
Routine
Simplicity
Specify
Structure
Supervision
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References
Dorris, M. (1989). The Broken Cord. New York, NY:
HarperPerennial.
Fago, F. (2012). Impact of prenatal alcohol exposure and preadoption placement on school-age functioning of intercountryadopted children. (Doctoral dissertation).
Malbin, D. (1993). Fetal Alcohol Syndrome Fetal Alcohol Effects
Strategies for Professionals. Center City, MN: Hazelden.
May, P. A., Gossage, J. P. et al. (2009). Prevalence and epidemiologic
characteristics of FASD from various research methods with an
emphasis on recent in-school studies. Developmental Disabilities,
15, 176-192.
Miller, L., Chan, et al. (2005). Health of children adopted from
Guatemala: Comparison of orphanage and foster care.
Pediatrics, 115, e710-e717.
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References
Streissguth, A. P. (1997). Fetal Alcohol Syndrome A Guide for
Families and Communities. Baltimore, MD: Paul H. Brookes
Publishing Co.
Streissguth, A. P., Barr, H., Kogan, J.,&Bookstein, F. L. (1996).
Understanding the occurrence of secondary disabilities in
clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol
Effects (FAE). Final report to the Centers for Disease Control
and Prevention (Grant No. R04/CCR008515). Seattle:
University of Washington School of Medicine.
Additional Resources
National Organization on Fetal Alcohol Syndrome (NOFAS),
Washington, DC
www.nofas.org
FASlink
www.acbr.com/fas/faslink.htm
FASworld Canada
www.fasworld.com
Fetal Alcohol Syndrome Family Resource Institute (FAS*FRI)
www.fetalalcoholsyndrome.org
National Institute of Alcohol Abuse and Alcoholism (NIAAA)
www.niaaa.nih.gov
Substance Abuse and Mental Health Services Administration
(SAMHSA)
www.samhsa.gov/centers/csap/csap.html
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Additional Resources
British Columbia Ministry of Education
(has extensive resources on educational programming for
children with FASD)
www.bced.gov.bc.ca/specialed/fas/
FASALASKA
www.fasalaska.com
Fetal Alcohol and Drug Unit
www.depts.washington.edu/fadu
Fetal Alcohol Syndrome Community Resource Center
www.fasstar.com
Evensen, D. & Lutke, J. Successful Intervention
http://www.fasalaska.com/8keys.html
Kulp, J. (2002). Our FAScinating Journey. Brooklyn Park, MN:
Better Endings New Beginnings.
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Additional Resources
Greenspan, S. I., Weider, S. (1998). The Child with Special
Needs. Cambridge, MA: Perseus Publishing.
Kleinfeld, J., & Wescott, S. (Ed.). (1993). Fantastic Antone
Succeeds Experiences in Educating Children with Fetal
Alcohol Syndrome. Fairbanks, AK: University of Alaska Press.
Mitchell, K. T. (2002). Fetal Alcohol Syndrome Practical
Suggestions and Support for Families and Caregivers.
Washington, D.C., NOFAS.
Sousa, D. (2001). How the Special Needs Brain Learns.
Thousand Oaks, CA: Corwin Press, Inc.
Toward Inclusion: Tapping Hidden Strengths : Planning for
Students Who are Alcohol-Affected. (2001). Manitoba
Education, Training and Youth, School Programs Division.
Winnipeg, MB.