Can Your Church work with Alcohol Related
Neurological Birth Defected
Adolescents and Adults
Dealing with Difficult People
By: Bruce Landry
I. What Are the Issues of Alcohol Related Birth Defects
The issues that are relevant to children and adults who are born and are living daily with Alcohol Related Birth Defects are numerous. We are aware that this is a condition that can be eliminated if we can stop a mother from ingesting alcohol during any period of pregnancy. A definition of Alcohol Related Neurological Birth Defects (ARND) refers to a group of physical and mental birth defects caused by alcohol ingestion during pregnancy.
Drinking during pregnancy can cause a wide range of harmful effects to the child. These effects can range from a characteristic pattern of physical features and mental impairment to more subtle cognitive (thinking) and behavioral (actions) dysfunction’s. Fetal Alcohol Syndrome (FAS) causes a spectrum of clinical effects on facial dysmorphology and can effect the central nervous system. Fetal alcohol syndrome (FAS), first described in the published medical literature in 1968, refers to a constellation of physical abnormalities, most obvious in the features of the face and in the reduced size of the newborn, and problems of behavior and cognition, in children born to mothers who drank heavily during pregnancy. These latter features lead to the most concern. The costs of FAS and related conditions can be quite high—for the individual, for the family, and for society. Rates of FAS in several of the most complete studies are similar—on the order of 0.5 to 3 cases per 1,000 births. Assuming an annual birth cohort of approximately 4 million, this translates into 2 to 12 thousand FAS births per year in this country. These incidence figures are offered not as established facts but to emphasize the magnitude of a problem that has serious implications—for the individual and for society.
Following is some very basic data to understand the effects of Alcohol on the body of our fellow believers who suffer from this:
Alcohol is a "teratogen" (substance that is toxic to the baby’s developing brain). Damage can occur in various regions of the brain. The areas that might be affected by alcohol exposure depend on which areas are developing at the time the alcohol is consumed. Since the brain and the central nervous system are developing throughout the entire pregnancy, the baby’s brain is always vulnerable to damage from alcohol exposure.
Not all damage from alcohol exposure is seen on brain scans, as lesions might be too small to be detected, yet large enough to cause significant disabilities.
Brain of normal 6-wk-old baby Brain of 6-wk-old baby with FAS
Alcohol Exposure During Stages of Pregnancy:
1. During the first trimester, as shown by the research of Drs. Clarren and Streissguth, alcohol interferes with the migration and organization of brain cells. [Journal of Pediatrics, 92(1):64-67]
2. Heavy drinking during the second trimester, particularly from the 10th to 20th week after conception, seems to cause more clinical features of FAS than at other times during pregnancy, according to a study in England. [Early-Human-Development; 1983 Jul Vol. 8(2) 99-111]
3. During the third trimester, according to Dr. Claire D. Coles, the hippocampus is greatly affected, which leads to problems with encoding visual and auditory information (reading and math). [Neurotoxicology And Teratology, 13:357-367, 1991]
The regions of the brain that might be affected by prenatal alcohol exposure in terms of ability to function include:
Corpus Callosum - passes information from the left brain (rules, logic) to the right brain (impulse, feelings) and vice versa. The Corpus Callosum in an individual with FAS/ARND might be smaller than normal, and in some cases it is almost nonexistent. (MRI images)
Hippocampus - plays a fundamental role in memory.
Hypothalamus - controls appetite, emotions, temperature, and pain sensation
Cerebellum - controls coordination and movement, behavior and memory.
Basal Ganglia - affects spatial memory and behaviors like perseveration and the inability to switch modes, work toward goals, and predict behavioral outcomes, and the perception of time.
Frontal Lobes - controls impulses and judgment. The most noteworthy damage to the brain probably occurs in the prefrontal cortex, which controls what are called the Executive Functions.
Prenatal Alcohol Exposure and the Brain, continued
Individuals with Fetal Alcohol Syndrome (FAS) and related disorders often have symptoms or behavior issues that are a direct result of damage to the prefrontal cortex, which is the part of the brain that controls “executive functions.”
Executive Functions
Executive functions ofthe prefrontal cortex: Effects of alcohol exposure on behaviorsrelated to executive functions:
· inhibition· planning· time perception· internal ordering· working memory· self-monitoring· verbal self-regulation· motor control· regulation of emotion· motivation · socially inappropriate behavior, as if inebriated· inability to apply consequences from past actions· difficulty with abstract concepts of time and money· like files out of order, difficulty processing information· problems with storing and retrieving information· needs frequent cues, requires “policing” by others· needs to talk to self out loud, needs feedback· fine motor skills more affected than gross motor· moody “roller coaster” emotions, exaggerated· apparent lack of remorse, needs external motivators
Children do not need to have full FAS to have significant difficulties due to prenatal exposure to alcohol. According to research done by Drs. Joanne L. Gusella and P.A. Fried, even light drinking (average one-quarter ounce of absolute alcohol daily) can have adverse affects on the child’s verbal language and comprehension skills. [Neurobehavioral Toxicology and Teratology, Vol. 6:13-17, 1984] Drs. Mattson and Riley in San Diego have conducted research on the neurology of prenatal exposure to alcohol. Their studies show that children of mothers who drank but who do not have a diagnosis of FAS have many of the same neurological abnormalities as children who have been diagnosed with full FAS. [Neurotoxicology and Teratology, Vol. 16(3):283-289, 1994]
Damage to the brain from alcohol exposure can have an adverse affect on behavior. Alcohol exposure appears to damage some parts of the brain, while leaving other parts unaffected. Some children exposed to alcohol will have neurological problems in just a few brain areas. Other exposed children may have problems in several brain areas. The brain dysfunction is expressed in the form of inappropriate behaviors. Their behavior problems should be viewed with respect to neurological dysfunction. Although psychological factors such as abuse and neglect can exacerbate behavior problems in FAS, we are looking primarily at behavior that is organic in origin. When it comes to maintaining good behavior, it is not a matter of the child "won’t" but "can’t."(Diane Malbin, MSW, Trying Differently Rather Than Harder, )
Sometimes the person’s behavior is misinterpreted as willful misconduct (Debra Evensen, www.fasalaska.com), but for the most part, maintaining good behavior is outside of the child’s control, especially in stressful or stimulating situations. Behavior problems in children with FAS are often blamed on poor parenting skills. While good parenting skills are required, even alcohol exposed children raised in stable, healthy homes can exhibit unruly behavior. The most difficult behaviors are seen in children who were prenatally exposed to alcohol and who also suffer from Reactive Attachment Disorder.
Most children with FAS disorders have some attachment issues, may display inappropriate sexual behaviors, show poor judgment, have difficulty controlling their impulses, are emotionally immature, and need frequent reminders of rules. As a result, many will require the protection of close supervision for the rest of their lives.
In doing research Sampson PD, Streissguth AP, Bookstein FL, Little RE, Clarren SK, Dehaene P, Hanson JW, Graham JM Jr., Department of Statistics, University of Washington, Seattle 98195, USA found the following:
We critique published incidences for fetal alcohol syndrome (FAS) and present new estimates of the incidence of FAS and the prevalence of alcohol-related neurodevelopmental disorder (ARND). We first review criteria necessary for valid estimation of FAS incidence. Estimates for three population-based studies that best meet these criteria are reported with adjustment for underascertainment of highly exposed cases. As a result, in 1975 in Seattle, the incidence of FAS can be estimated as at least 2.8/1000 live births, and for 1979-81 in Cleveland, approximately 4.6/1,000. In Roubaix, France (for data covering periods from 1977-1990), the rate is between 1.3 and 4.8/1,000, depending on the severity of effects used as diagnostic criteria. Utilizing the longitudinal neurobehavioral database of the Seattle study, we propose an operationalization of the Institute of Medicine’s recent definition of ARND and estimate its prevalence in Seattle for the period 1975-1981. The combined rate of FAS and ARND is thus estimated to be at least 9.1/1,000. This conservative rate--nearly one in every 100 live births--confirms the perception of many health professionals that fetal alcohol exposure is a serious problem.
This means that as churches in the United States and Canada we are working with ten or more people per thousand who are effected in some manner by ARND in our congregations. Since these disorders are lifetime disorders, do we even have the ability to work with them in a caring Christian loving environment.
II. Can we work with these Adolescents and Adults
The short and concise answer is yes. That is a qualified yes though. The youth and adults that suffer from this ailment require a very sensitive and loving heart. Some of the greatest assets that Jesus speaks of are lovingly nurtured in care of these individuals. They require a great amount of patience and attention, throughout there lifetimes.
First we must somehow come to a means of identifying youth and adults suffering from this condition.
We might simply ask the following in a loving manner:
· Have you ever been diagnosed with FAS/FAE or suspected to have FAS/FAE?
· Did your biological mother and father have a drinking problem? If yes, did she have these problems as far back as you can remember?
· Did your biological mother drink during pregnancy?
· Have you ever had seizures or convulsions (often a symptom of organic brain disorder)?
· Did you have learning problems in school?
· Were you ever diagnosed, or thought to have, attention deficit disorder (ADD) or hyperactivity as a child? (Although not all attention deficits are caused by prenatal alcohol exposure, these conditions can be behavioral markers or FAS/FAE.)
Additional questions might be:
· Did you graduate from high school? If not, why not?
· Did you ever receive special services in school? (e.g., special education classes, tutoring)
· Did you ever repeat a grade?
· Did you ever have a problem with school truancy?
· Were you ever suspended or expelled?
We as caregivers often hear or express the very simple fact that our children or adults “Don’t get it.” In reality this is the truth, they do not choose to forget or not take seriously directions or instructions but because of the neural path disintergration suffered by people effected—they simply cannot get information from the right to the left brain hemispheres as we are able to do. We often see them in rages of anger, because they themselves do not know why they don’t work. They are a lot like a horse with blinders on, they think very vertically (linear) with little or no ability to think horizontally. The diagnosis in itself can be a blessing to a child or parent of a child with this disorder. They then can concentrate on things that can benefit the child and the immediate community around the family.
The community must be made aware that your child or adult has this very difficult issue and will require a little more care around. The community should be defined as any possible person having contact with the child or adult. The school is a community, the store is a community, the health club is a community, the church is a community, and every other entity with which the child or adult effect by ARND has contact with becomes part of the community and has to be aware of the need to structure things in a manner to have a successful outcome for the person affected and the community.
Some keys for developing a successful intervention for people who are willing to work with these youth and adults are as follows:
1. Be Concrete
Children with ARND can do well when parents, teachers and church members talk in less abstract or more concrete terms. This means avoiding words with double meanings or idioms. Because the child’s social-emotional understanding can be far below their chronological age, it helps to “think younger” when providing assistance and giving instructions.
2. Consistency
Because of the difficulty children with ARND experience trying to generalize learning from one situation to another, they do best in an environment with few changes. This includes language. Teachers, parents and church members can coordinate with each other to use the same words for key phrases and oral directions.
3. Repetition
Children with ARND have chronic short term memory problems; they forget things they want to remember as well as information that has been learned and retained for a period of time. In order for something to make it to long term memory, it may simply need to be re-taught again and again.
4. Routine
Stable routines that don’t change from day to day make it easier for children to know what is expected next and can decrease their anxiety, which better enables them to succeed.
5. Simplicity
Remember to Keep it Short and Sweet (KISS method). Children with ARND may be easily over-stimulated, leading to “shut-down” at which point no more information can be taken in by the child. Therefore, a simple environment is the foundation for an effective school program. This would indicate that rooms should not have hangings in them, flags flying, kites twirling or any object that moves to distract the children.
6. Specific
Say exactly what you mean. Children with ARND may have a difficult time with abstractions, generalizations, and not being able to “fill in the blanks” when given a direction. Tell them to stop immediately doing something that can hurt themselves or others. Tell them step by step what to do, developing appropriate habit patterns. It has also been established that people affected with ARND learn better in a dual transmission modality. If you can speak and sign to them simultaneously they have a better chance of understanding directions. Posting daily routines in appropriate areas is another facet that works well.
7. Structure
Structure is the “glue” that makes the world make sense for a child with ARND. If this glue is taken away, the walls fall down! A child with ARND achieves and is successful when their world provides the appropriate structure permanently. Many children are provided structure in school and the community and the treatment team decides that they are ready to be “mainlined”(term referring to going back to standard classes and structure), at which time the child fails miserably. The reason an ARND child succeeds in anything is due to the structure and we as caring people need to realize this up front.
8. Supervision
Because of their cognitive challenges, children with ARND often bring a naivete to daily life situation. They need constant supervision, as with much younger children, to develop habit patterns of appropriate behavior.
As you can see from the above the challenges of working with these youth and adults that are in our churches and families can and is formidable. The benefits to ourselves, our community, and to these priceless youth and adults are enormous.
I have asked several Christian Counselors if they were aware of anything done on a Christian level to address this critical need and thus far have come up with none. Do our churches have problems with these youth and adults? Absolutely. Are they some of the difficult people we deal with? Absolutely. Can we deal with these hurting people in our societies? Absolutely.
III. Conclusions
As a bi-vocational Church Planter/Pastor and Juvenile Probation Officer for the State of Alaska covering the Bristol Bay, Aleutians, and Pribolof Islands Region of Alaska I have met and work with many youth and adults affected by this developmental disability.
I would readily state that progress can be made with these youth but requires extensive prayer and a structured presentation environment.
The churches may be one of the better organizations in dealing with this issue that has so many “hot button” issues. If we can truly love the sinner and stand averse to the sin, then we should be able to extend a loving hand of fellowship to a wife and husband who in their sin drank heavily and harmed their gestating infant. Most mothers do not know for at least a portion of the first trimester that they are pregnant. In this time frame they are probably out and about living in the world. If and when these women come to accept Jesus Christ as the Lord of their lives—we should as Christ directs put there sins as far as the east is from the west. We should show them Christ-like love and acceptance while lifting them up in a manner in which their child may best be served.
In the secular world most caregivers tire of working with the youth and there family because you do not normally see immediate results, and actually very few long term results. Consistency provides the framework for learned response living similar in most cases to a B.F. Skinner approach and model of motivation.
There must be immediate and consistent consequences for negative behavior, the lack of this could result in harm to the effected person, family, church are community. The rewards of consistent safe and wise stewardship should also flow freely. I am reminded of the Christian song: Freely, Freely, you have received…Freely, Freely, give… You and I should do no less, and truly these special people in the sight of God deserve no less than our very best, as we show them and each other the light of Christ that He brings into our lives.
It is my conclusion that if we are to show the light of Christ to a lost and dying world, we need to start by showing His love by reaching out to the segments that are somewhat hopeless by the worlds standards. Funny we were all there at a point in our life not that long ago. I pray that you feel likewise.
Bibliography:
1. Prenatal Alcohol Exposure and the Brain, By Teresa Kellerman, FAS Community Resource Center, www.fasstar.com
2. Teratology 1997 Nov;56(5):317-26 Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelopmental disorder. Sampson PD, Streissguth AP, Bookstein FL, Little RE, Clarren SK, Dehaene P, Hanson JW, Graham JM Jr.
Department of Statistics, University of Washington, Seattle 98195, USA.
3. Fetal Alcohol Syndrome, Alaska Educator’s Guide, Office of Fetal Alcohol Syndrome, PO Box 110609, Juneau, AK 99811
