Role of the Families in
Caring for Children with FAS or FASD

In 1996, Ann P. Streissguth, Ph.D., a nationally acclaimed FAS/FASD researcher, published the results of her study that documented the long-term affects of prenatal exposure to alcohol. For the first time, there was conclusive evidence that prenatal exposure to alcohol caused organic damage in specific parts of the brain that resulted in life-long mental retardation and severe behavioral disorders. These findings provided the impetus to sponsor a major conference in New Jersey in 1998 that included Dr. Streissguth as the keynote speaker. The purpose of the conference was to educate allied health, educational, child welfare professionals and policy-makers about these new findings. In addition to presenting data on the intellectual deficiencies and behavioral problems associated with FAS/FASD, Dr. Streissguth also addressed important family factors that either mitigate or aggravate the long-term detrimental effects of prenatal exposure to alcohol. These family issues are called protective and risk factors and include:

Protective Risk

Stable Family Dysfunctional Family
Early Diagnosis No Diagnosis
Educational Supports School Problems
Mental Health Services Undiagnosed Mental Health Issues
Family Support System Substance Abuse
Community Services Juvenile Delinquency

Dr. Streissguth's findings demonstrated that, while the Protective Factors do not "cure" a child with FAS/FASD, a warm, loving and stable family environment serves to lessen the ill effects of the alcohol exposure. However, risk factors almost always resulted in the child with FAS/FASD having mental health problems, disrupted school experiences, early and sustained substance abuse problems, unemployment, problems with independent living, and involvement with the juvenile and adult criminal justice systems.See http://www.arbi.org/prevention/neuro_second.html for more information. Also, see Streissguth, A.P., Bookstein, F.L., Barr, H.M., Sampson, P.D., O/Malley, K., and Young, J.K. (2004). Risk Factors for Adverse Life Outcomes in Fetal Alcohol Syndrome and Fetal Alcohol Effects. Developmental and Behavioral Pediatrics, 25, 228-246, for an excellent review of secondary disabilities that result from and/or are closely-related to prenatal exposure to alcohol.

If you think that you child may have FAS or FASD, or if you consumed alcohol while you were pregnant, please talk with your child's doctor as soon as possible or contact one of the New Jersey Regional FASD Diagnostic Centers. Although there is no cure for FAS or FASD, if children get help early, they may perform much better in school and in life. See http://www.adopting.org/rwfas.html.

Families and their early intervention provides are encouraged to visit http://www.mcf.gov.bc.ca/child_protection/fas/fas2d.htm to review a number of protective strategies that may assist in working with their children who have been prenatally exposed to alcohol.See http://www.nofas.org/living/.

Potential Warning Signs That May Indicate Developmental Problems Caused by FAS or FASD

  • difficulty learning to read, write, or remember information
  • difficulty controlling behavior
  • difficulty understanding rules and expectations requiring constant supervision
  • difficulty learning from past mistakes
  • low frustration level
  • acts without thinking and/or demonstrates poor judgment
  • easily distracted and/or unable to sit still
  • difficulty going to sleep
  • unusual physical appearance

The materials presented below were provided by the FAS Family Resource Institute. To learn more about the role of families in advocating and caring for children prenatally-exposed to alcohol, please visit lib_fas.htm.

Parents with children between the ages of 1 to 5 often report that their children

  • are misunderstood by medical service providers, especially when their children's IQ is within normal limits
  • have difficulty distinguishing between friends and enemies
  • can be rather difficult to manage when they are out in public places
  • have difficulty in the areas of reasoning, making judgments, and memorizing information
  • are highly manipulative
  • have irregular patterns of sleep that leave them exhausted and irritable
  • are medically fragile
  • are "high maintenance" and require constant supervision and attention

Parents with children between the ages of 6 to 11 often report that their children

  • often lack empathy for other
  • become resentful and angry when they realized that they receive more supervision and structure than their peers
  • are emotionally volatile and exhibit wide mood swings during the day
  • require high levels of stimulation and excitement
  • often lack a sense of justice
  • can be highly manipulative
  • are impulsive and unpredictable
  • are often exhausted from their irregular sleep patterns.

Parents with children between the ages of 12 to 17 often report that their children

  • are often exhausted from their irregular sleep patterns
  • are unable to take responsibility for their actions
  • unaware of their normal hygiene needs
  • become terrified when making major transitions (e.g., changing schools or residences)
  • are at high risk for being drawn into anti-social behavior (e.g., stealing)
  • are extremely vulnerable to ideas presented in movies, advertisements, and in music.

Parents with children who are 18 years or older often report that their children

  • have considerable difficulty handling money
  • are often exhausted from their irregular sleep patterns
  • are highly vulnerable to co-dependent relationships
  • have difficulty remembering to take all forms of medication
  • are vulnerable to panic attacks, depression, and suicidal thoughts
  • are unable to follow simple safety rules during meal preparation, driving, and working.

See www.nofas.org/, http://www.cdc.gov/ncbddd/fas/, andhttp://www.nlm.nih.gov/medlineplus/fetalalcoholsyndrome.html for a considerable list of informative sites and links related to potential developmental problems caused by the prenatal consumption of alcohol by women of childbearing age.


   
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