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.
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 dysmorphic 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 midface 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.
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.
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.
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.
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 distractibility. 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.
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. Guinta 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.
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