2000 Jordan Institute
Supporting Families Whose Children Have Fetal Alcohol Syndrome (FAS)
One out of every 750 children born in the United States has fetal alcohol syndrome (Merolla, 1993). Fetal alcohol effect (FAE) and fetal alcohol syndrome (FAS), the more severe manifestation, are organic brain disorders in children caused by a mother's use of alcohol during pregnancy. Poor parenting after birth does not cause FAE or FAS. These are lifelong conditions that can affect anyone, regardless of race or economic status (Montana FAS/FAE Program, 1996).
Fetal alcohol syndrome is caused when a mother drinks alcohol during pregnancy, injuring the fetus by destroying and damaging cells in the central nervous system. This destruction of brain cells results in malformations in the developing brain structures. Several studies indicate that the severity of the disability has to do with the amount of prenatal exposure to alcohol (NCFCRP, 1994). Most children with FAS are born to women who are chronic alcoholics, although even moderate use of alcohol during pregnancy can result in FAE or FAS (Coles, Smith & Falek, 1987).
When they are born, children with FAS are frequently small and have a low birth weight. Often they are born prematurely. Physical characteristics of children with FAS include abnormally small heads, facial irregularities (such as thin or wide lips or malformed or misalligned teeth), widely spaced eyes, short noses, flat cheeks, limb and joint abnormalities, poor coordination, and heart defects. Central nervous system damages sometimes are manifested as developmental disabilities, attention deficit disorder, learning disabilities, seizures, developmental delays, and behavioral disorders.
Other common effects of FAS include sleep disturbances, difficulty in peer and sibling relations, hyperactivity, difficulty developing independent skills, and excessive talkativeness (Guiunta & Streissguth, 1988; Vaitenas, 1981; NCFCRP, 1994). It is important to resist the temptation to focus strictly on the negative traits of children with FAS: parents and those who work them have also found these children to be socially engaging, interested in others, affectionate, and good with animals. (See "A Behavior Profile of Fetal Alcohol Syndrome".)
Children with FAS cannot be diagnosed definitively until three years of age because they are developmentally incapable of completing the tests until then. However, children and families benefit significantly from an early diagnosiseven a preliminary one. This information can help them shape their expectations and obtain support and intervention for the child, and so avoid the cycle of failure at home and school that is almost certain without diagnosis.
The first thing parents need is understandable, practical information about FAE and FAS. Given this information and the proper amount of support, caretakers will begin to get a realistic view of the child's current and future functioning; from there they can develop reasonable expectations.
Parents also need a substantial amount of support. Children with FAE/FAS require a great deal of supervision, and this can be exhausting for birth, foster, and adoptive parents. Day care, respite care, and other relief from parenting alllow caretakers to rejuvenate and reenergize. Siblings may also have needs to be addressed (Montana, 1996).
Birth mothers may require special support. They are likely to be active or recovering alcoholics who need help addressing their substance abuse and the affects it may have had on numerous areas in their lives. They may benefit from substance abuse counseling, parenting classes, or nutritional counseling. The stress of caring for a child with behavioral and medical problems may make it more difficult for these women to maintain sobriety. Some mothers may also need help working through feelings of guilt (Giunta & Streissguth, 1988).
When it is necessary to place children with FAS in foster care, there are certain characteristics to look for in foster homes. Giunta and Streissguth recommend placing these children in homes of parents "who are calm and low-key individuals, secure and comfortable with themselves, and who live stable and predictable lives" (p. 457). The authors found that parents who led busy, complex lives were more inclined to be dissatisfied with FAS children's slow development (Giunta & Streissguth, 1987).
Those who are new to parenting this type of child may find connecting with other parents of kids with FAS helpful. Caretakers can benefit from a support group with caretakers of other children with the condition. The Parent-to-Parent program is another resource that helps parents of children with special needs in North Carolina connect with one another. To contact this program, call 1-800-852-0042.
Collaboration with the school system is also critical for social workers serving children with FAS. Because kids with this condition have special educational needs--they function best in a small classroom with clear guidelines and plenty of individual attentionsocial workers often have to advocate for appropriate educational services. Periodic testing is recommended to assist teachers in designing specific instructional plans to meet the child's learning needs. Preschool activities should also be considered, not only to maximize the child's development, but also to provide respite to the caretaker.
Finally, caseworkers need to work with caretakers to advocate for children with FAS. Parents will need help exploring all avenues for financial assistance, since FAS children have specialized and often costly medical and educational needs.
Coles, C., Smith, I., & Falek, A. (1987). Prenatal alcohol exposure and infant behavior: Immediate effects and implications for later development. Advances in Alcohol and Substance Abuse, 6(4), 87-104.
Giunta, C., & Streissguth, A. (1988). Patients with fetal alcohol syndrome and their caretakers. Social Casework, 69(7), 453-459.
Merolla, C. (1993, July 19). Could I give this child back? First for Women, 5(29), 80-82.
Montana Fetal Alcohol Syndrome/Effects Program. (1997). Facts about FAS and FAE (On-line). Available: http://members.aol.com/jshawdna/fas2.htm. (Web address no longer functional.)
North Carolina Family and Children's Resource Program. (1994). Fetal alcohol effect/fetal alcohol syndrome. In Caye, J. (Ed.) Performance Based Core Curriculum in Child Welfare, pp 6-19 through 6-20. Chapel Hill, NC: Author.
Vaitenas, R. (1981). Children with special needs: Perinatal education for adoption workers. Child Welfare, 60(6), 405-411.
© 1997 Jordan Institute for Families