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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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