Fetal Alcohol SyndromeFetal Alcohol EffectsAn Introduction to FAS/E Compiled by: NyolaDubienski Edited by: The Family Support Working Group Power Point Created by: AllissaKlatt
What are FAS and FAE?? • Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) are two kinds of alcohol related birth defects. • To be diagnosed with FAS a child must have abnormalities in EACH of the following areas: • Slowed growth- weight and height below normal, and small head size • Facial Characteristics such as: small eye openings, wide set eyes, flat nasal bridge, underdeveloped or flattened cheek areas, long indistinct area between nose and upper lip, and thin upper lip
The definition of FAE is not as clear as FAS. • FAE applies to children who do not have the facial characteristics of FAS. • HOWEVER! This does not mean that the effects of FAE are less serious than those of FAS. In some cases the effects of FAE are just as severe as the effects of FAS! A Pregnant woman NEVER drinks alone! FAS leads to problems with learning, behaviors, and community living. It is irreversible! However, it is 100% preventable!
How much is TOO Much? • No one really knows! Research shows that heavier drinking increases the chances for FAS and FAE. There doesn’t seem to be any time during a pregnancy where it is safe to drink! • Doctors recommend NO drinking during pregnancy just to be safe!
Is it ALL the woman’s fault? • NO! • Research suggests that alcohol may affect sperm either through altering the genetic material in the sperm or altering the chemical nature of the semen which contains the sperm. Since this is not yet knows whether this damages a fetus, it is best for men not to use alcohol when planning OR risking a pregnancy!
Characteristics at a Glance… • Social: • Poor practical reasoning • Socially immature • Easily influenced by peers • Difficulty getting along with peers • Poor social judgment • Constant need for supervision • Initially charming and then intrusive • Trouble with changes in routine • High demand for tough • Lack of bonding to caretakers • Indiscriminate attachment to strangers
Characteristics Continued… • Language and Learning • Speech Delays • Delayed Concept Formation • Stuttering and Stammering • Articulation Difficulties • Intellectually Disabled • Need for External Structure • Poor Problem Solving • Difficulty Grasping Cause and Effect Relationships • Perseverance • Memory Problems • Spotty Retention • Difficulty Learning from Past Experiences • Lack of Motivation • Learning Disabilities • Auditory perceptual Deficits
Characteristics Continued… • Physical • Low birth weight • Small form • Small head circumference • Hearing problems • Poor gross motor co-ordination • Malformed or misaligned teeth • Differences in sensory awareness • Joint and bone abnormalities • Poor hand/eye coordination • Poor fine motor coordination • VERY short neck • Cleft palate
Characteristics Continued… • Behavioral • Behaviorally disorganized • Poor self image • Lack of inhibition • Stubborn • Teasing or bullying behavior • Truancy Problems • Depression/ withdrawal • Hyperactivity • Easily Over stimulated • Impulsive • Difficulty with transitions • Disinterest in food • Fearless • Unresponsive to verbal cautions
Medical Issues Please See Handout!
Developmental Issues • Infancy- • Very difficult to care for/ exhausting for parents! • Irritable, hard to feed, and no predictable sleep patterns • Lack of ability to suck ( feeding can take hours ) • Failure to thrive ( may result from feeding issues ) • Problems bonding • Delayed in meeting basic milestones ( rolling over, sitting, walking, sounds )
Developmental Issues • Preschool- • Disrupted sleep and aversion to food • Slow speech development or talking to much ( Wrong words at the wrong time ) • Very irritating/intrusive to adults • Relationship building difficulties • Overly friendly with no inhibitions • Indiscriminate in relationships ( Mom is no more important than the store clerk or the ice cream man ) • Hyperactivity • No patience and poor tolerance for frustration which leads to LARGE temper tantrums over minor things. • No coping skills when in comes to change
Developmental Issues Continued… • Ages 6-12 • School is by nature a highly stimulating, complex, and challenging environment into which a child with FAS/E has a hard time fitting. • Academics are not the main problem for kids with FAS/E- What is? • Social Skills! • The child is unable to share, plays with younger kids, doesn’t wait their turn, or follow the rules. • A child with FAS/E wants to play with younger kids or be around adults. • There is a lack of understanding that actions have consequences, and an inability to transfer learning from one situation to another. • This all leads to early isolation.
Developmental Issues Continued… 6-12 • The need to close physical contact becomes increasingly inappropriate. • The child may become an offender or a victim of abuse! • Problems with short term memory hamper everything. • Anger , frustration, and refusal to cooperate often result from the developmental issues. • Time management becomes a HUGE issue! • Children with FAS/E seem to exist in the here and now and seem to lack any internal sense of time, or an internal time clock. Problems with making sense of this information seems to overwhelm the child.
Adolescence • In combination with puberty, all the learning and behavior problems of the younger child culminates during adolescence, presenting major management problems. • There is an increase in impulsiveness, and a total lack of inhibitions and boundary awareness. • There is also a lack of basic critical thinking and judgment skills which rings alarm bells for parents and professionals alike. • Adolescents with FAS acts with no understanding of how their actions affect others. They put themselves and others at risk and do not seem to understand the finality of death. • The adolescent also has trouble making and keeping relationships. This puts them at risk for being manipulated by others. • Adolescents with FAS/E can often talk the talk, but have a hard time walking the walk!
What an Adolescent with FAS/E can Expect… • Without a significant level of intervention, the young person with FAS/E is going to be experiencing a high degree of failure, school refusal, truancy, and potential or actual outcomes with the LAW! • These problems put a lot of stress on the individuals and can lead to a higher frequency and higher severity of maladaptive behaviors! This can eventually lead to a family breakdown.
Adulthood • For the most part, adults who have not had early and prolonged interventions can expect the following: • The inability to hold down a job • The inability to live independently • The inability to manage money • The inability to parent children • Drug and alcohol Abuse • Withdrawal and isolation • Mental illness
Adulthood • It has been said that what most marks an adult living with FAS/E is the appearance of capability without the actual ability.
Recent Outcomes • It is only very recently that outcomes for those with FAS/E have begun to change as we begin the process of finding “what works” for people living with FAS/E.
Positive Characteristics of FAS/E • People affected by FAS/E can with the help of interventions and people learn to function in society. • There are many positive characteristics of FAS/E that coincide with the negative. They are as follows: • Cuddly/cheerful behavior • Friendly, great sense of humor • Determined/ persistent • Curious • Energetic • Highly verbal/ wonderful storytellers • Hard workers
Managing the Future • The future is NOT hopeless. Affected individuals can function successfully within their own limits! • Things that can be done to assist an individual with FAS/E in being successful are: • Obtain an early diagnosis • Learn all you can about FAS/E • Recognize individual strengths and weaknesses in the individual affected with FAS/E • Anticipate the behavioral/ health/ and academic challenges and be prepared for early interventions • Find programs that are suitable for the individual • Approach behavior management as a TEAM! • Be realistic ( It will take time for the systems to work )
Diagnosis is the first step in accomplishing that change in attitude which is critical for success for individuals affected by FAS/E.