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... take place. 'Recent research has led to an awareness of the importance of providing early intervention to children diagnosed with FAS, 's ays Wilton. 'Development and stimulation programs begun between birth and age 5 have made enormous differences. ' How Much Alcohol Is Too Much? It is clear that abusing alcohol during pregnancy is dangerous, but what about the occasional drink? How much alcohol constitutes too much during pregnancy? No evidence exists that can determine exactly how much alcohol ingestion will produce birth defects. Individual women process alcohol differently.
Other factors vary the results, too, such as the age of the mother, the timing and regularity of the alcohol ingestion, and whether the mother has eaten any food while drinking. Many doctors believe that an occasional glass of wine during pregnancy presents no risk to the fetus. But as Linda Nicholson, a genetic counselor, points out, 'We don't know how much alcohol is safe so we just say, 'Don't drink at all. '' Although full-blown FAS is the result of chronic alcohol use during pregnancy, FAE and ARND may occur with only occasional or binge drinking. Because alcohol easily passes the placental barrier and the fetus is less equipped to eliminate alcohol than its mother, the fetus tends to receive a high concentration of alcohol, which lingers for longer periods than it would in the mother's system. Nicholson calls it DUI, or 'developing under the influence. ' 'Mothers who drink during the first trimester of pregnancy have kids with the most severe problems, because that is when the brain is developing, 's he says. 'The connections in the baby's brain just don't get made properly when alcohol is present.
Of course, in the early months, many women don't even know they " re pregnant. ' Nicholson suggests that women who are thinking about becoming pregnant adopt healthy behaviors before they get pregnant. Women who abstain from alcohol in early pregnancy may feel comfortable drinking in the final months. But some of the most complex developmental stages in the brain occur in the second and third trimesters, a time when the nervous system can be greatly affected by alcohol. New information reveals that even moderate alcohol intake, and especially periodic binge drinking, can seriously damage a developing nervous system. 'Something that adds to the confusion, 's ays Jacobs, 'is that many doctors and obstetricians seem to be inordinately uncomfortable about screening women for alcohol use. ' Dace Svikis, PhD, program director for The Center for Addiction and Pregnancy at Johns Hopkins Bayview Medical Center, agrees. Some doctors 'present the drinking issue as a kind of double negative: 'You don't drink, do you?' 's ome women feel that the only appropriate thing to say is 'no, ' and that is often the end of the discussion about drinking, says Dr. Svikis. 'Maybe some doctors aren't sure what to do if a woman actually says, 'Yes, I am drinking, 's o they feel it's simpler just not to ask. ' Prevention Is the Goal The tragedy is that FAS is entirely preventable.
The best way to prevent FAS is by not drinking. 'You can't control what genes or chromosomes you give your child, but you can control what you ingest during pregnancy, ' Nicholson says. Dr. Svikis emphasizes the need for treatment programs tailored specifically for women who drink. 'A lot of at-risk women don't get the prenatal care they need, not because they don't want it or don't care about their babies, but because they feel this incredible stigmatization from health care providers because of their alcohol or poly drug abuse. We need to support these women, and to educate at a basic level. We also need agreement among professionals. ' Updated and reviewed by: Kim Rutherford, MD Date reviewed: September 2001 Reviewed by: Steven Dowshen, MD and Linda Nicholson, MS, MC & # 65532; About Us / Contact Us / Partners / Editorial Policy / Privacy Policy & Terms of Use & # 65532; Note: All information on Kids Health is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor. (c) 1995 - 2005 The Nemours Foundation.
All rights reserved. Fetal Alcohol Syndrome What are the implications for adoptive parents? Patients with fetal alcohol syndrome typically have multiple handicaps and require special medical, educational, familial and community assistance. Their caretakers need medical information, peer support, financial assistance and respite care. Many children are alcohol exposed in utero but are placed as normal, healthy infants. These children may require lifelong, expensive, intensive care and intervention to reach their potential.
Alcohol use and abuse affects us all. Society-at-large and the adoption community in particular must educate themselves to the very special needs of alcohol affected children. PATIENTS WITH FETAL ALCOHOL SYNDROME AND THEIR CARETAKERS Identifying Fetal Alcohol Syndrome (FAS) The potentially negative consequences of alcohol abuse during pregnancy have been suspected since biblical times. The relationship between maternal alcohol abuse during pregnancy and developmental birth defects is well-documented in psychological and medical literature. An accurate diagnosis of FAS or Fetal Alcohol Effects (FAE), in which patients display partial effects of the syndrome and evidence many of the same problems as full-blown FAS, must be made by a doctor or geneticist.
However, identification of children possibly affected by prenatal alcohol exposure can be carried out by professionals involved in service delivery. Characteristics of FAS/FAE Patients with FAS are of short stature, slight build, and have a small head. Typically they are below the third to tenth percentile compared to national norms. A pattern of dimorphic facial features characterizes these persons as well, and include 1) short eye openings; 2) a short, upturned nose; 3) smooth area between the nose and mouth; and 4) a flat mid face and thin upper lip. The facial patterns made FAS patients recognizable although not grossly malformed.
In addition, these patients can display other physical anomalies including 1) minor joint and limb abnormalities; 2) cardiac defects; 3) dental anomalies; and 4) vision and hearing problems. Intellectual Capabilities A considerable range of intellectual functioning is found among patients with FAS. In a report of twenty cases of varying severity, Ann P. Streissguth and colleagues reported a range of IQ scores from 16 to 105 with a mean IQ of 65. Severity of the syndrome was related to IQ, with the most severely affected children having the lowest IQ scores.
Behavior There are many behavioral characteristics which differentiate FAS patients from other mentally retarded individuals. Socially, they tend to be very outgoing and socially engaging, yet they are frequently seen by others as intrusive, overly talkative, and generally unaware of social cues and conventions. Poor social judgment and poor socialization skills are common: many patients are hungry for attention, even negative. Due to their social immaturity, they have difficulty establishing friendships, especially with children of the same age. The potential for both social isolation and exploitation of individuals with FAS in very evident.
Hyperactivity is frequently cited as a problem for young children who characteristically have short attention spans. Many also have memory problems, thus creating further setbacks to adaptive functioning and academic achievement later on. NEEDS OF THE PATIENT WITH FAS Medical Needs Patients with FAS/FAE typically have complex medical needs associated with their higher than average congenital anomalies. Infants are at risk for central nervous system problems, including a weak suck and feeding and sleeping difficulties as well as failure to thrive. Birth control and sex education for adolescents with FAS are additional areas of medical concern. As adolescents, these children tend to be sexually curious, yet often lack understanding of socially appropriate sexual behavior.
Thus, they are at higher than average risk for sexual victimization due to their impulsive behavior and poor social judgment. Educational Needs Children with FAS/FAE have special educational needs. Even very young infants can benefit from early stimulation programs to help with intellectual and motor development. These programs are now widely available, with some even offered at home by traveling therapists and educators. Preschoolers often have a range of developmental and language delays as well as signs of hyperactivity, irritability, and destructibility.
Preschool programs which follow individualized educational plans are helpful for the child as well as for the parents who gain valuable respite time to regroup from the intense demands of these children. Appropriate placement in special education classes beginning in elementary school is often necessary for children with FAS/FAE. A small classroom setting with clear guidelines and a great deal of individual attention can maximize the intellectual capabilities of these learners. Although intensive remedial education has not been show to increase the intellectual capabilities of children with FAS/FAE, it may prevent further deterioration.
Many patients with fetal alcohol syndrome reach an academic plateau in high school. Many will be unable to hold a regular job. Nonetheless, all of these students need to know basic life skills, including money management, safety skills, interpersonal relating, and so forth. These tasks will enrich their adult lives and allow them a degree of independence.
The addition of such a life-skills component to the special education curricula for FAS students can be invaluable. Wherever possible and appropriate, vocational training should be part of the high school experience. Unfortunately, most vocational and technical institutes beyond high school will offer a curricula too academically rigorous for developmentally delayed individuals. Family Needs Patients with FAS/FAE are at a higher than average risk for physical and sexual abuse and neglect when raised in their families of origin. These children need a supportive, loving home environment with clear guidelines and clear lines of communication in order to develop to their fullest potential.
When foster (or adoptive) placement is necessary, the greatest progress is made by calm, low key individuals, who are secure and comfortable with themselves and live stable and predictable lives. Families who treat the FAS child as normally as possible, combining loving acceptance with firm limit setting seem more satisfied than do those who have high performance expectations. Due to their poor social judgment, underdeveloped independent living skills and impaired intellectual functioning, most FAS children will require a structured, sheltered living situation throughout their lives. The most severely affected may require a completely supervised and sheltered environment. For more functional patients, a group home or halfway house for developmentally disabled adults may be appropriate if continued residents with a family is not possible or desirable.
NEEDS OF THE CARETAKER The foster or adoptive parent of a child with FAS assumes a responsibility far beyond that normally associated with parenting. The constellation of physical, intellectual, and behavioral characteristics that typifies patients with FAS can create a very demanding situation for any family. The children often require constant supervision. Parents require an extraordinary amount of energy, love, and most of all, consistency. Therefore, these parents need support in their efforts. This support can often be provided by the social service network to help prevent the burnout that often accompanies high-stress parenting situations.
Those parenting FAS/FAE children need information about fetal alcohol syndrome in order to understand the physical, intellectual, and behavioral concomitants of the child's diagnosis. Parents must have a realistic view of the child's functioning in order to develop reasonable expectations and plan appropriate interactions for the child in order to minimize management problems. A well-run parent support group set up around the needs of those parenting handicapped children can be an ideal vehicle for parents to share information, gain support, and overcome the feeling of being 'the only one' experiencing problems. Many caretakers of children with FAS/FAE will require some form of financial assistance as well. Adoption of FAS patients, as with other special needs children, can mean high costs and low subsidies for families. The recent emphasis on adoption of special needs children has focused on this problem and is attempting to address these issues.
An advocacy-oriented caseworker can be an invaluable resource in helping potential foster and adoptive families identify available financial resources and negotiate their way through the maze of paperwork often required. Need for Respite Care Many parents and foster parents of FAS/FAE children could benefit from respite care, yet few receive it and most don't even know about existing programs which might serve them. The daily stress and demands generated by these children can easily trigger parental burnout. Once a parent support group is operative, a rotating system of informal, needs-based respite care can be arranged among participating families in some cases. The Need for Advocacy Children and parents dealing with the problems of FAS/FAE need strong advocates.
Advocacy must come from both the parents and the professionals involved. Their different spheres of influence and different roles must combine to ensure that the needs of both parent and child are being met. Despite the many problems of patients with FAS/FAE, these individuals have a great capacity for love and contribution to family and community. The challenge of caretakers and service providers alike is to help these children harness their potential and find their place in the world. The full version of this article first appeared in Social Casework: The Journal of Contemporary Social Work, 9 / 99. Carole T.
Guinea is a doctoral student at the University of Vermont, Burlington, VT. At the time this article was written, she was Program Assistant, Pregnancy and Health Study, Department of Psychiatry and Behavioral Science, University of Washington, Seattle. Ann Pytkowicz Streissguth is Professor in the same department. The following article is condensed from a longer piece based on research funded in part by contract # 243 - 87 - 0047 of the Indian Health Service. I Want to Subscribe to Roots & Wings Adoption Magazine and read more stories like this one Select here to see related stories available. Return to the top Back to Roots & Wings To Adopt: Assistance Information Support We welcome comments and suggestions.
Send your e-mail to Copyright (c) 1995 Adopting Resources. All Rights Reserved FACTS ABOUT FAS/FAE The Preventable Birth Defect Did you know that? ? ? ? ? & # 65532; FAS is the leading known cause of mental retardation. & # 65532; FAS/FAE produces irreversible physical and mental damage. & # 65532; Behavioral problems of FAE children can be as severe as those of FAS children. & # 65532; FAS/FAE crosses all socio-economic groups and effects all races. & # 65532; Costs for one FAS child is estimated to be $ 2 million over a lifetime. & # 65532; FAS/FAE costs the American taxpayer more than $ 321 million every year. & # 65532; No amount of alcohol consumption during pregnancy is known to be safe. & # 65532; Of FAE Individuals between the ages of 12 and 51: 95 % will have mental health problems 55 % will be confined in prison, drug or alcohol treatment centers or a mental institution 60 % will have 'disrupted school experience' 60 % will have trouble with the law 52 % will exhibit inappropriate sexual behavior & # 65532; Of FAE individuals between 21 and 51: 82 % will not be able to live independently 70 % will have problems with employment More than 50 % of males and 70 % of females will have alcohol and drug problems Treatment of
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Research essay sample on Fetal Alcohol Syndrome Children With Fas
