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Sara* sank into her easy chair and sobbed heaving sobs of burning tears, tears that seemed to bite her face in bitterness toward her. Her doctor said it was FAS, Fetal Alcohol Syndrome. Sara went numb with disbelief when he said that it was incurable. Her precious baby, Sam, would be like this the rest of his life.
Sara recoiled into the past to find proof the diagnosis was wrong, as she recalled how young Sam was conceived. "I did have fun in those days", she thought with a slight smile breaking the weeping for a moment. She remembered the bar where she first met his father, a tall, dark granite sculpture of a man. Sure, it could have been the booze, but her blood seemed warm in her veins when she first laid eyes upon him.
Things progressed quickly between the two, and the fire waxed on as they partied together sometimes three to four nights a week for the next two months. Suddenly, just as suddenly as he walked into her life in that bar, he was gone. But he left a memorial of their passion, soon evidenced by a missed period. Sara was pregnant.
Sam was slightly under-weight when born according to the OB GYN, "but nothing to worry about. Let's just monitor his weight gain," she said. Sara noted that his ability to stand and learning to walk seemed to lag behind other kids at day care. She wondered then if he might be a little slow, but shrugged it off. As time passed she began to think something was wrong. Then she read about Fetal Alcohol Syndrome (FAS).
Sara scrambled through her memories attempting to figure exactly when she conceived and how much alcohol she had consumed after that point in order to assuage the guilt. The facts are that medical science doesn't know how much it takes to produce Fetal Alcohol Effects (FAE), yet many doctors still tell pregnant women that a glass of wine want hurt them or their baby. "While a doctor can't say that a glass of wine will hurt the developing fetus, they also can't say that it won't," observes Candace Shelton, M.S.. "The best thing," Shelton says, "is to not drink when having unprotected sex and through a pregnancy or don't have sex when drinking."
The best thing is to not drink when having unprotected sex, and through a pregnancy or don't have sex when drinking.
I f you wonder about an adopted child, or may have consumed alcohol during pregnancy, and are concerned that your child may have FAS, Steven Dowshen, MD , states that the signs and symptoms of Fetal Alcohol Syndrome are:
facial abnormalities, including smaller eye openings, flattened cheekbones, and indistinct philtrum (an underdeveloped groove between the nose and the upper lip)
epilepsy
poor coordination/fine motor skills
poor socialization skills, such as difficulty building and maintaining friendships and relating to groups
lack of imagination or curiosity
learning difficulties, including poor memory, inability to understand abstract concepts such as time and money, poor language comprehension, poor problem-solving skills
poor understanding of sequential instructions
behavioral problems, including hyperactivity, inability to concentrate, social withdrawal, stubbornness, impulsiveness, and anxiety
Children with Fetal Alcohol Effects display the same symptoms, but to a lesser degree. A child may have any mixture of these symptoms to varying degrees depending upon:
When the mother drank or used drugs during the development of the fetus. Earlier development produces greater physical as well as mental abnormalities.
How much the mother drank or used drugs during the development of the fetus.
How long the mother drank or used drugs during the development of the fetus.
Forty-four percent of women who drink heavily during pregnancy will have a child with Fetal Alcohol Syndrome. Of the other 56%, many will have Fetal Alcohol Effects including less severe learning and behavioral difficulties. A few will be apparently normal. A combination of factors determines whether the exposed child will be afflicted with FAS or FAE. First of all is the genetic makeup of the mother and the fetus. It has been demonstrated that many members of certain populations have similar genetic compositions. Research has suggested, for example, that some individuals of Native American descent do not make enough of an enzyme necessary in the breakdown of alcohol in the liver or some are lacking that enzyme all together. Therefore, these individuals would be at genetic risk of passing this trait onto the fetus.
When exposed to even slight amounts of alcohol such fetuses could be affected, even for short periods of time.
Sam started kindergarten and immediately started having behavior problems. Sara had noticed some lack of impulse control and what appeared to be a disregard for her instruction and redirection. He just seemed to do whatever popped into his head regardless of what she said or did. She would get quite stern, even spank or threaten him. Still, he almost seemed to defy her.
In the classroom, his behavior worsened. There was too much going on. Everywhere he looked something distracted his attention, the bulletin board, the decorations, the other children, all too much to take in and pay attention to a teacher. Often these children are misdiagnosed as Attention Deficit Hyperactivity Disorder (ADHD) when they get into a classroom environment. But more often they are just viewed as oppositional or defiant.
FAS is 33 times more likely to occur in a Native American baby than a Caucasian baby, 37 times more than Hispanics, and 5 times more likely than a Black baby.
Often children would rather appear "bad" than "dumb", Shelton says, so they accept the erroneous stigmatization of being bad. They might find their acceptance among other "bad" kids or in gangs. This stigma is often generalized to a broad spectrum of Native American children due to the greater prevalence of FAE and FAS among them as compared to other ethnic groups (see Burd studies below).
According to studies conducted for the Centers for Disease Control and Prevention (CDC), incidences of FAS per 10,000 total births for different ethnic groups were as follows: Asians 0.3, Hispanics 0.8, whites 0.9, blacks 6.0, and Native Americans 29.9. [CHAVEZ, G.F.; Cordero, J.F.; & Becerra, J.E. Leading major congenital malformations among minority groups in the United States, 1981-1986. Journal of the American Medical Association 261(2):205-209, 1989.] These statistics indicate that FAS is 33 times more likely to occur in a Native American baby than a Caucasian baby, 99.6 times more for Asians, 37 times more than Hispanics, and 5 times more than Blacks. The combined conclusion of ten studies of FAS concludes:
The prevalence of Fetal Alcohol Syndrome in the Indian and Native population of the United States and Canada was consistently high across the ten studies
Burd, L. & Moffatt , M.E. Epidemiology of Fetal Alcohol Syndrome in American Indians, Alaskan Natives, and Canadian Aboriginal Peoples: A Review of the Literature. Public Health Reports 1994, 109, 688-93.
What is the impact on Native Americans of FAS?
Dr. Rizwan Shah, Director of the Family Ecology Center in Des Moines , Iowa , estimated that in 1994 the lifetime cost of each child born with FAS was 2.4 million dollars. The health care costs for individuals with FAS and FAE can be staggering. If special facilities are needed, they are extremely costly. Special education costs are very high, especially if the individual needs to be placed in a special care facility.
No single factor has contributed to the demise of native people since their removal from their ancient tribal lands of their ancestors.
School performance, employability, criminal activity, family dysfunction, successive generations of substance abuse, etc., are all affected. No single factor has contributed to the demise of native people since their removal from their ancient tribal lands of their ancestors. The rampant incidence of FAE among Native Americans is truly today's Trail of Tears except this time the native people are leading themselves down the trail.
Percent of FAE Population with Secondary Problems
Research by SAMHSA FASD Center for Excellence
fasdcenter.samhsa.gov
Mental Health Problems 93%
Disrupted School Experience 42%
Trouble with the Law 41%
Confinement 33%
Inappropriate Sexual Behavior 43%
Alcohol & Drug Problems 37%
Dependent Living 83%
Employment Problems 79%
= Age 6+ = Age 12+ = Age 21+
The Leading Cause of Developmental Disorders
FAS is the leading cause of mental retardation and other developmental disabilities. Prenatal alcohol exposure causes brain damage . Alcohol can damage the developing brain in a number of ways. The brain may be smaller than normal or may have missing or underdeveloped portions, such as the corpus callosum.
The corpus callosum connects the two hemispheres of the brain, allowing the left and right sides to communicate with each other. It is necessary for advanced thought processes such as abstract thinking, logic, and sequential thought. Prenatal alcohol exposure can cause thinning or complete absence of the corpus callosum. These abnormalities have been linked to deficits in attention, intellectual function, reading, learning, verbal memory, and executive and psychosocial functioning.
It is clear from this severe brain damage that a person suffering from FAS will be mentally impaired, but several physical disabilities result as well. This cluster of problems and disorders requires a system of care of a variety of services throughout the child's life.
Strategies To Improve Outcomes for Individuals With an FAE
Self-Esteem and Personal Issues
It doesn't take long for children to pick up on the fact they are different. When that feedback is negative, their self-esteem suffers.
Use person-first language (e.g., "child with FAS," not "FAS kid").
Do not isolate the person or cause them to feel different. Include them in activities.
Do not blame people for what they cannot do. Educate yourself to the disabilities of FAE and keep reminding yourself of them when you get frustrated.
Set the person up to succeed. Give them tasks they can do, one step at a time. Catch them doing things well and praise them on the spot. This alone will make the child eager to do well like a puppy doing tricks for a treat. If all they get is negative attention, that shapes their self-image and negative behavior.
Strategies for Sensory Integration Issues
Sensory integration involves the perception of information in the environment around the child in a meaningful way so as to make sense of it and behave appropriately. FAE children often get overwhelmed and stressed in a situation where a lot is going on. They might get excited, act out, or leave.
Simplify the individual's environment. Minimize decorations. Mute colors and contrasts. Eliminate sources competing for the child's attention, e.g., radio, TV, or people talking while studying.
Provide a lot of one-to-one physical presence.
Take steps to avoid sensory triggers. When one observes a negative reaction to a particular situation, sound, or other stimulus, avoid those.
Strategies for Memory Problems
Remember, don't blame the child for what they can't do. If you tell them to go into the next room, turn on the light, get the broom, and sweep the floor, you might find them playing with the toy they found in the room. That is not disobedience but forgetting what they went into the room for.
Provide one direction or rule at a time and review rules regularly.
Use a lot of repetition.
Strategies for Information Processing Problems
Processing the intake of information is particularly difficult for the child with FAE.
Check for understanding, "What did you hear me say?"
Use literal language. If you say, "Drop what you are doing and come here." they will likely drop the dishes and come to you! They aren't being sarcastic. That's what you told them to do, and that's what they did. Why would you get angry about that?
Teach the use of calculators and computers. Math and arithmetic functions require abstract reasoning and sequential thought processes.
Look for misinterpretations of words or actions and discuss them when they occur.
What can I do?
Everyone can do something! Check out action items below to see what you can do
Call or write your tribal nation and tell them to do more about this issue. Ask them if they have a FAE Education Coordinator. Most have cut the budgets for that. Education is key to prevention.
Don't drink when trying to conceive children or while pregnant. Don't have unprotected sex while drinking.
The tribal community is sacred. Community requires that we look out for one another. We prosper or decline as a people. Encourage young prospective mothers to abstain from alcohol and drugs.
Educate yourself and others. Be armed with the facts, and help pass the word.
A great people respect the wisdom of their elders and the new life yet to come.
Disclaimer: All information on this site is provided for informational purposes only! By no means is any
information presented herein intended to substitute for the advice provided to you by any health care or other professional
or organization.
