The Lifelong Effects of Fetal Alcohol Syndrome
Good Parenting Is Not Enough
by Deborah Hage, MSW
The child with FAS has brain damage. You can’t love or parent away brain damage, however, you can minimize the negative effects and maximize the strengths.
“This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lessons that no one studies willingly, the hard, slow lessons of Sophocles and Shakespeare – that one grows by suffering. And that too is Jessy’s gift. I write now what fifteen years past I would still not have thought possible to write: that if today I were given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands – because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.”
Clara Park – The Siege
A few overall thoughts:
- Personality tends to be very endearing, cheerful, out going, good intentions (though with little ability to follow through)
- Trusting, naïve (sometimes with the wrong people)
- Difficult to motivate – often due to lack of cause and effect thinking, stubborn
- Live in the present, little concept of time/past/future
- Prone to lying, stealing, “borrowing”, “mooching”
- Predisposition to addictions
- Limited memory, smaller brain, higher verbal skills mask problems
- Alcohol is a depressant. In utero it results in a pattern of depressed and sporadic growth in all systems. The fetus lacks the ability to metabolize the alcohol so it is built up in the system, particularly in the brain, and broken down and secreted very slowly, increasing the length of exposure.
- Extremely placid or extremely agitated
- Weak suckle, poor sleep/arousal patterns
- Low birth weight, gain weight slowly, remain small (look failure to thrive)
- Startle easily and are easily over-stimulated
- Abnormal muscle tone, tight or floppy
- When left with alcoholic birth mother at risk for abuse, attachment disorders
- Benefit from consistent routine, structure
- Balance required between necessary infant stimulation and over stimulation – talk often and softly, rock gently and frequently, massage gently and often
- Toys with cause and effect theme, such as popup toys, helpful
- Show delays in almost all areas
- Consistent routine, structure remain important
- Balance between stimulation and over-stimulation remain important
- Begin teaching/learning routines by rote
- Begin repetitive nursery rhymes and finger plays, work toward memorization
- Begin social skills training, sharing, taking turns, “Please”, “Thank you”, play games around them
- Tell child what to do, not what not to do, “Stay in the yard” instead of “Don’t go in street.”
- Physical and occupational therapy need to begin
- Enjoy having a baby longer than most
- Keep things simple, only 1 or 2 toys available, avoid clutter
- Keep directives and explanations simple, the more words the less understanding
- Parents need to accept reality child has medical disability, not personality defect
- Cue attachment responses to smile, eye contact, touch, movement
- As similar to peers as they will ever be
- Do not qualify for special ed. at this point, parents must become advocates
- Gross motor skills usually adequate, fine motor skills tend to be weak
- Speech picks up speed and is unstoppable!
- Over repetitive play and perseveration can become a problem
- Very friendly to the point of socially inappropriate behavior
- Consistently reinforce boundaries around other people’s things and space
- Teach social cues, “What am I feeling/thinking when I look like this?”
- Academic mastery of skills will be inconsistent, reteaching will be imperative
- Develop skill/hygiene/daily living routines. Teach and reteach using charts, songs, rhymes.
- Routine and repetition have proven to be the most effective learning strategy
- Don’t insist on mastery before proceeding as mastery may never come
- Love and acceptance must not be tied to performance – lots of hugs, touches, smiles, etc
- Have increased difficulty with cause and effect thinking – forget antecedent, live in NOW
- Poor abstract thinking, poor impulse control, poor short term memory, poor boundaries
- Poor sense of time, what time it is, how much time has passed
- Tendency to be stubborn, have temper tantrums, intermittently explosive
- Begin to experience difficulty with boundaries of others – stealing, lying, inappropriate behaviors no longer cute
- Remain very talkative, but conversations begin to noticeably lack depth
- Around 4th Grade academic lags begin to become much more apparent, have difficulty moving to higher order of thinking, applying general information to specific situations and generalizing specific information to a wider application
- Developmental age begins to noticeably fall behind chronological age
- Empathetic, may bully but protect others from other bullying
- Poor performance often misinterpreted as lack of effort, not trying or willful misconduct
- Signs of social isolation, discipline problem at school beginning
- Cause and effect teaching critically important to emphasize, do not assume child understands it, point it out (both when negative and positive behaviors are involved)
- Consequences must be applied immediately – need not be severe, need to be consistent. Add to instead of taking away as child forgets what was taken away. Instead of taking away a toy, add a chore
- Avoid asking “Why” questions
- In school and at home clearly differentiate between what child can’t do and won’t do
- Teach in as many modalities as possible, break tasks into small steps, build on strengths
- Make sure goals are realistic, re evaluate expectations
- Routines emphasized, with child taking more and more control over them (essential for adult survival). Use charts, lists, calendars, etc
- Be specific about expectations, “Pick up your toys in the living room and put them away in your room”, instead of “Put away your things”
- Become actively involved in child’s education, cultivate friendships with teachers, volunteer, provide school with info re. FAS, insist on IEP
- Limit the amount of time spent on homework, reward effort not completion. If you can’t remain calm and cheerful get someone else to help with homework (your relationship with your child is more important than learning a specific piece of information)
- Provide supervised social activities
- Depakote can sometimes be effective, Risperdal and Adderal have also provided positive effects
- Parents tend to get defensive, have high frustration and anxiety, guilty, blaming of self
- Provide love and affection unconditionally and spontaneously
- Same hormonal changes as other adolescents, however, they lack fewer controls and have less cause and effect thinking. Emotional maturity does not match physical maturity.
- Sexually irresponsible and impulsive. Needs very direct parental explanations and rules.
- Facial characteristic diminish, height still below average, however begin to gain weight
- Usually have no trouble getting a job as they are personable, talkative and present well.
- Maintaining the job is difficult as they project a false sense of competence. Need a job coach either from the community or from the school. Need high supervision, simple tasks with moderate amount of repetition.
- Take active role in helping child manage finances.
- Teen needs to understand and accept causes and nature of their disability, actively plan for future, have realistic discussions of their capabilities (This is very difficult and often can’t be done.)
- Goals for teen need to be accepted, understood, chosen by teen if they are to have meaning
- Developmental age approximate 1/2 of chronological age, little more maturation to be expected
- Very vulnerable to being preyed on by others, easily led into negative behavior by others
- Drugs and alcohol can become issues, consumption prior to legal age is often start of legal difficulties
- Parents task is difficult as the teen needs guidance and structure, but is resistant to it
- Can help by encouraging lists, calendars, routines, schedules. Seek out a mentor.
- School needs to be structured, skill/job oriented
- For a variety of reasons, many teens with FAS are involved with the juvenile justice system.
- Hold child responsible for criminal activity while providing support as he navigates the system. Seek mental health avenues for obtaining help.
- Adolescent needs positive relationship with parents now more than ever.