Caregiving for Children Prenatally Exposed to Alcohol

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

“The problems kids cause are not the causes of their problems.” Nicholas Long

Learning Objectives • Describe the physical and behavioral characteristics of children who have been prenatally exposed to alcohol; • Increase awareness about the prevalence of prenatal alcohol exposure; • 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

Definition of Fetal Alcohol Syndrome • Prenatal and/or postnatal growth retardation, where weight and/or length are below the 10th percentile when corrected for gestational age.

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.

Definition of Fetal Alcohol Syndrome • 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.

FAS faces

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)

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.

FAS pFAS ARND, ARBD FASD Static encephalopathy Neurobehavioral disorder Sentinel physical findings

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

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)

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

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

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

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

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

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

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

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

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)

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

“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)

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

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

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

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)

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

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%

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%

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%

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)

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

Home Management • STRUCTURE, STRUCTURE, STRUCTURE! Plan and practice routines and rituals. Once the children learn these they will feel more relaxed and self-confident

Caregiving for Children Prenatally Exposed to Alcohol