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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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

Learning Objectives

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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DiagnosisProblems 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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FASpFASARND, ARBDFASD

Static encephalopathyNeurobehavioral disorderSentinel 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 DamageIQ◦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:– 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 DisabilitiesPermanent, organic brain damageStructural abnormalities of the brainDamaged “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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• 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

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 7038

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 70Streissguth, 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 non-structured 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 ManagementMany 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 autistic-like 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 outcomesKids with FASD have difficulty

understanding cause / effect relationshipsThey 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 conceptsAs early as possible, have kids use real

money in real life situationsMay never be able to memorize math factsNeed a rigid routine for budgetingNo concept of time, 12 hour clock confusingRemember 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 feelingsThis process must be taught using direct

instructionRepeatedly 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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ReferencesDorris, M. (1989). The Broken Cord. New York, NY:

HarperPerennial.Fago, F. (2012). Impact of prenatal alcohol exposure and pre-

adoption placement on school-age functioning of intercountry-adopted 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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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.

References

Additional ResourcesNational Organization on Fetal Alcohol Syndrome (NOFAS),

Washington, DCwww.nofas.org

FASlinkwww.acbr.com/fas/faslink.htm

FASworld Canadawww.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 ResourcesBritish Columbia Ministry of Education

(has extensive resources on educational programming for children with FASD)www.bced.gov.bc.ca/specialed/fas/

FASALASKAwww.fasalaska.com

Fetal Alcohol and Drug Unitwww.depts.washington.edu/fadu

Fetal Alcohol Syndrome Community Resource Centerwww.fasstar.com

Evensen, D. & Lutke, J. Successful Interventionhttp://www.fasalaska.com/8keys.html

Kulp, J. (2002). Our FAScinating Journey. Brooklyn Park, MN: Better Endings New Beginnings.

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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.

Additional Resources