Development Overview of the Behaviors of Toddlers, Children, Adolescents and Adults Disabled by Fetal Alcohol Exposure
*Notes from the July FAS/FAE needs assessment from Jocie DeVries.
AGES 1-5
Parents reported that Toddlers with FAS/E:
Are sometimes medically fragile
Are usually high-maintenance children keeping parents alert and on- duty 24-hours-a-day
Are often exhausted and irritable from a lack of sleep due to uneven sleep patterns and unpredictable sleep-wake cycles
Are a danger to self and others because they act before they think
Are unable to comprehend how their behavior relates to consequences
Are unaware of the universal laws of nature, such as cause and effect
Are void of the normal sequential learning abilities in reasoning, judgment and memory
Are initially perceived as normal, but have subtle and predictable developmental delays that are not understood or recognized by doctors and nurses Are highly manipulative and easily escalate out of control when out in public with gullible strangers who are unaware of the FAE/E disability characteristics.
Can’t distinguish friend from enemy Are unrecognized and misunderstood by service providers as having a serious and permanent disability because their IQs appear to be developing normally
AGES 6-11
Parents report that children with FAS/E:
Are often misunderstood and overlooked as permanently disabled because their IQs are normal.
Are often exhausted and irritable from a lack of sleep. These children often do not outgrow their uneven sleep patterns and unpredictable sleep/wake cycles.
Are impulsive and totally unpredictable, creating multiple safety issues for themselves and other family members throughout the day.
Are very mischievous and do not understand that their thoughtless pranks (like fire setting or running away) can endanger their own lives and the lives of others.
Are highly skilled in manipulative tactics reporting that children with FAS/E are innately skilled at knowing whose buttons to push and how to keep chaos and hysterics circulating in their environments.
Seem void of a normal sense of justice.
Have a high need for stimulation and excitement to keep them entertained and happy.
AGES 12-17
Parents report that teens with FAS/E:
May still need limits and protection like a three-year-old because of their disability in reasoning, judgment and memory.
Are demanding more and more freedom to be with their peers while they may still need the same structure as toddlers.
Are at high risk for being drawn into destructive anti-social behavior such as running away to live on the streets, stealing, lying and addiction to legal and illegal drugs. Thrill-seeking peers are a total fascination to teens with FAS/E.
Seem to have an exaggerated sense of self-protection, always “landing on their feet”. Almost a primal fear instinct related to understanding submission and power as in the law of the jungle.
Seem to have innate ability to recognize raw power and to respond appropriately to it. This odd trait makes them extremely vulnerable to gang activities.
Great difficulty understanding who is a friend and who is an enemy.
Have great difficult recognizing the limitations of their disability.
Are terrified of being forced into change or transition, especially big changes like moving into high school or junior high which involves meeting and dealing with large numbers of people and multiple classrooms.
Are often fascinated by concrete issues such as sexual activity or setting fires.
Are highly susceptible to gang membership which provides clear power and submission “structure” and consequently peer acceptance and loyalty. They are fascinated by the intense emotions and stimulation of gang activity. In gangs no one else is doing well in school so teens with FAS/E fit right in. Continue to have problems with their siblings. These problems escalate as they pass through the teen years. Big gap in family rules which must be applied differently to teens with FAS/E and their siblings. This gap often is so severe that out of home placement is critical for everyone’s safety. Have innate traits which cause them to continually seek chaotic activity. However, parents describe that such traits which at first glance appear to be negative characteristics can sometimes be used by caregivers to produce positive results. Living arrangements for example in a group home or residential treatment program often have other “stimulating” kids that teens with FAS/E love to be around. Such group homes have a high ratio of caregivers and have rotating (rested) staff to provide supervision 24-hours-a-day. Parents report that family bonds often improve during out-of-home care. Are able to recover (emotionally) from a confrontation with parents or siblings VERY quickly. Parents report that the discrepancy between the emotional recovery times of teens with FAS/E and their parents is a significant factor in parent burnout. Are seriously impaired when it comes to making “decisions.” Parents describe teens with FAS/E as not having the judgment or reasoning skills to logically make “decisions.”
Continue to be a safety menace as they grow through the teen years. Parents report that their focus on safety shifts during the teen years from keeping the teen with FAS/E and family safe to fearing for the safety of the surrounding community. Have increasing anger toward their (unreasonable) parents who continue to try to get the kids to follow basic
Adolescence
Parents report that their adolescents enter puberty at age-appropriate times, but their reasoning and judgment skills are a tragically impaired guide to appropriate times and places to express sexual curiosity.
Are emotionally volatile and often exhibit wide mood swings throughout the day
Are often disconnected from their own feelings and are unable to identify or express logical reasons behind their volatile outbursts
Are isolated and lonely because the desire to be loved and included in their peer group activities remains intact while the reasoning skills to fig- tire out why they are excluded is lacking. Depression can become a serious problem as social opportunities become more and more rare.
Are angry, defiant, and resentful toward parents, unaware that the parents are often desperately searching for a balance between structure and supervision and fairness and freedom. Blame parents for the odd set of family rules which, to the child, are the cause of the loss of friends and social opportunities
Need constant reminders about personal hygiene issues much like during the toddler years
Are still unable to distinguish friends from enemy.
Are void of natural empathy for another point-of-view, i.e.. often lacking the cooperative quality of “do unto others as you would have them do unto you. By late childhood this glaring gap in social development begins to alarm parents
Are moral chameleons. As adolescence approaches parents notice that despite consistent and loving care, family values and even general rules of behavior are not being internalized. The chameleon quality is quite different from a typical/normal teenager which chooses anti-social gang values. Parents report that children with FAS/E exhibit moral chameleon behavior; switching values and even facial characteristics according to their current peer group or social environment.
Are often over-stimulated by their surroundings. Without understanding and support the child with FAS/E is often volatile and mentally unstable. Psychotic behavior which requires psychiatric hospitalization is not uncommon.
Special issues that trouble parents raising children with FAS/E are the relationships between siblings.
Parents describe the strain in their families from balancing the frictions between siblings. Parents must try to keep track of two sets of household rules.
For example some rules favor siblings who need less supervision and consequently are allowed more freedom to be alone with their peers. The child with FAS/E who has a normal IQ will eventually recognize the “unfair” rules and can become very resentful and defiant toward their siblings and parents
Other rules favor the child with FAS/E because the nature of the disability means the child with FAS/E of ten has a volatile temper. has great difficulty controlling impulses and can’t stay focused on any task. Parents must handle discipline differently. lavishing praise on the child with FAS/E for the simplest task. Outraged. the normal siblings complain “you’d never let me get away with that kind of behavior!”
Parents are caught in the crossfire trying to emotionally absorb the anger and resentment from all sides.
Parents describe their exhaustion which causes them to neglect the needs and activities of their normal children. Parents agonize over the unmet needs of all their children because the critical needs of the child with FAS/E monopolizes both their time and energy. Siblings feel angry and resentful toward their unavailable parents while at the same time they resent the child with FAS/E for embarrassing the family with outlandish behavior
Parents are not only exhausted physically from caring for a child with special 24-hour needs, but they are emotionally drained from the anger and bitterness they receive from everyone.
Parents describe siblings that eventually realize that their brother or sister is not deliberately tearing the family apart. but is disabled. Emotionally confused and disoriented, siblings are often overcome by guilt for “hating” the child with FAS/E.
Parents can use this time to bond and grieve again with the sibling over the trauma of FAS/E. However, without help the whole family unit can become co-dependent with the child with FAS/E as the needs of the healthy family members are forgotten in the chaos of FAS/E.
Parents describe siblings that are overburdened by guilt and turn their anger inward on themselves. (“I’m such a terrible person for hating my brother.“) Parents describe siblings that become depressed and sometimes suicidal.
Parents describe destructive co-dependent relationships which can develop between siblings and children with FAS/E. Sexual assault and incestuous relationships arc not uncommon.
Parents describe the intensity of the adrenal rush surrounding the charisma of the child with FAS/E. This constant state of tension can become addictive, especially to siblings who may never have experienced life without chaos