FAS Fallout
©2002
Teresa
Kellerman
We
know what the Primary Disabilities of FAS disorders are: small head and/or short stature, attention
deficit disorder, physical anomalies like heart defects, reduced potential for
intelligence, learning disabilities and behavior disorders. These are the physiological effects on the
body and the brain caused directly by the exposure to alcohol during
pregnancy. These are permanent, there is
no cure.
The
Secondary Conditions that are common among individuals with FAS disorders
have been published by Ann Streissguth after years of studies. These occur as a result of the primary
disabilities. They are often more
serious in their effects on the individual, but they are totally preventable
with early recognition and appropriate support services.
There
is a third layer to the effects of prenatal exposure to alcohol. This is what I call FAS Fallout, the
effects that are experienced by the families caring for the affected
individuals, primarily the parents. The
primary caretaker, usually the mother, is the one who is most seriously
affected by FAS Fallout, but this can be experienced by the other spouse and by
siblings and can have devastating results.
The most common cause of FAS Fallout is lack of understanding by others
about FAS disorders and lack of acceptance of the limitations imposed by the
disorder and the restrictions needed to ensure safety and success for the
child. There might also be alienation
of siblings, friends, and extended family members. The divorce rate among these families is high.
Most
often, the caregiver is an adoptive mother.
In many cases, she adopted the child with the understanding that the
child was healthy and normal. Sometimes
the agency has withheld information about exposure prenatally to alcohol or
other drugs for fear the child might not be accepted into the adoptive
family. The result is a devastating
grief over the loss of the dreams a parent has for a healthy, typical child.
When
the caregiver is the birth mom, the primary pain is guilt. There is so much blame placed on the birth
mother by society, that even when she did not intend to harm her child, even
when she has won her struggle with addiction and is living a life clean and
sober, she still fights off the combination of guilt, grief, and fear.
Sometimes
it is the birth father or a step mother who is raising the child. Sometimes the child is cared for by a foster
family. There is often frustration, and
unresolved anger toward the birth mother for exposing the child to alcohol
before birth. The anger and the grief
and the fear roll into a negative attitude that is hard to get past.
Something
that is common for all the caregivers I have talked with is grief. There is a deep fear of the future. As the parent comes to realize the true
nature of the FAS disorder (permanent brain damage rendering the child at high
risk of never becoming totally independent), a shadow of fear overwhelms and
sometimes consumes the parent.
Outwardly, there is a great deal of anger, at the child, at the birth
parent, at the system, at the alcohol, at the alcohol industry, at the world
that does not understand or accept their child. The grief is universal.
If the fear and anger are not allowed to surface, there may be great
sadness and depression. Most parents
cycle through all of these feelings, over and over. And for parents of children with FAS disorders, the grief is
heavier than for most parents of children with other disorders. The stress is beyond what a normal person is
expected to cope with.
The
results of FAS Fallout for the family include: chronic depression that needs to
be treated with anti-depressants and therapy; social isolation temptation to
self medicate with alcohol; chronic fatigue and burnout. What can extended family and community
members and helping professionals do to minimize FAS Fallout for the primary
caregiver? What are the intervention
strategies that can be offered to help ensure success for the family? Let’s fight Fallout with Fallout!
Friendship, or at least feelings of empathy
Acceptance of the reality of FAS
Listen to the ones who really understand
Organize to take action
Understand the nature of FAS behaviors
Talk to everyone to raise awareness
Friendship in dark times and in crisis
as well as when things are going well.
Call or visit, and offer help, even if it is just a shoulder to cry on
or an ear to listen to the latest crisis, even if it’s the same crisis over and
over. Bring laughter and love and maybe
some affection. A hug from someone who
really cares is priceless.
Acceptance
of the
reality of FAS. The child has gifts and
talents, recognize them. The child has
limitations imposed by the FAS disorders.
You can help by not dismissing the disorder by referring to it as a
stage they will grow out of, or saying things like “All kids are like
that.” Not all kids have inconsistent
ability to control their impulses, poor judgment, and emotional development of
a child half their chronological age.
Listen to the parents. They are the ones who know FAS best. They understand the child and know best what
their child needs to succeed.
Learn
about FAS
disorders. Read the materials the
parents give you. Attend a class or
conference on FAS. Ask questions. Learn
to think differently, with an open mind.
Organize
and take
action. Offer to help form a non-profit
community group. The emotional
organization they need is a support group.
If there is not a local group to attend, help to form one. There are many Internet groups that offer
daily support, understanding, and solutions to common problems. Parents also need freedom from the chaos in
their lives and homes. The physical chaos of homes of these families seems to
be a common occurrence. The answer to
this can be found on the Internet as well, at www.FlyLady.Net
. This is a good place for moms to
start to put their lives back together.
If the family does not have a computer and/or Internet access, this
would be the ideal first step to providing some real help to the family. First stop: www.fasstar.com
.
Understand the true nature of FAS
disorders. The behavior problems are
due primarily to brain damage from alcohol, not necessarily poor parenting. Most parents have been suspected or accused
of sexual abuse or human rights violations.
All children with FAS disorders exhibit inappropriate sexual behaviors. All children with FAS disorders need
restrictions that would be considered unfair or unethical if imposed on typical
children. Refrain from judgment until
you get to know the family well and learn all the details behind the issues.
Talk
to everyone
you know about FAS disorders. Tell them
everything you are learning. Tell them
about the family’s experiences (maintaining confidentiality of course). Talk to your legislators and policymakers,
and let them know what the families need and what the community needs as well
(funding for services, public education, teacher training, etc.) Raising awareness in the world begins with
one person – you, right there in your own family and your own
neighborhood. Talk about alcohol and
addiction. Give a talk about FAS to a
local civic group, or at a health class at a local school. Talk to your hairdresser, your delivery
person, your spouse, your third cousin twice removed. The greater the awareness, the better the chance to begin finding
solutions. Take part in the next FAS
Awareness Day event. If one is not
already planned, then plan one. Get ideas
at www.fasworld.com . This is the kind of thing that the parents
are doing all on their own, that they would really appreciate some help with.
If
for each stressed out parent there was just one dedicated friend who would be
willing to carry out these intervention strategies, then FAS Fallout would
slowly disappear, and in its place we would see Fun and Freedom instead.