©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?† Letís 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 itís 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 ďAll kids are like that.Ē† 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 familyís 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 Ė 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.