Question from parents of a teenage girl with FAS:
Our daughter with FAS is defiant and does not adapt well to change.
She fights with us about anything and everything, with cries of "It's not fair!"
Before getting a diagnosis, we did not know what we were up against.
She was unable to meet our high expectations.
Then we got the idea that the problem might be FAS.
realizing that her social skills were really poor.
Loud and clear we heard "will always need an external brain"
and "supervised 24/7" so we went about making some changes in her
She resents the increased supervision and lost freedom. And I am not as available to my other children. She has become the problem around which most other issues revolve. How do we cope with the feelings of guilt?
How do we minimize the impact of
our daughter's FAS on the rest of the family?
Answer from Eva, another mother who shares her experience and insight:
It's normal for adolescents to "hate" everyone especially people providing
limits and structure. They all desperately need and even want them though.
People with FAS/E have the same drives and desires as others but only half
(or less) the skills and maturity needed to fullfill them.
cultivate well educated extra "external brains" to take the load off
immediate family with regularly scheduled activities for your daughter:
* church activities & "missionaries"
* community activities and groups
* activities and groups for developmentally delayed (my favorite)
* respite services (already got that going!)
* family & friends
* official school "buddies" & peer mentors
Medications: most people with FAS/E seem to have mood and/or arousal
(activity) differences. Antidepressants, mood stabilizers and stimulants for
hyperactivity seem the most commonly helpful medications. They help
"normalize" the brain and help people with FAS/E be more successful.
Counseling: has been very helpful for my son. Someone other than family
giving the same messages and a place to share grief over her disability.
Family counseling is really great for reducing stress on everyone.
Use the time without your daughter to schedule time alone and together.
Educate the family together and plan together on how best to help their sister.
Everyone needs to be on the "same page" including the teen with FAS.
Grieving a loss is a
process and it never really ends. It has many stages and one is guilt. You
have to let yourself experience the stages, work through them and move
beyond them to really do your best for yourself and your family. The grief
of the loss of a "normal" life comes and goes in waves and cycles as you
move through the stages of life. It may have a beginning and a middle but
there's no real end. *There is resolution and acceptance though.* An "easy"
life is not always the "best" life and rough roads make you stronger.
If you don't meet your own needs and preserve your own sanity, in the long
run you won't be much good for your teen with FAS, or anyone else.
To join an Internet support group for parents of teens with FAS: OlderFAS Mail List
Note from Teresa:
The most important article you can read, print out, and share is the one about FAS and the Brain, as this clearly shows that the problem behaviors are neurological in origin, and not always within their control.
The articles that I highly recommend include:
What Makes Teens Tick? NEW!
Tri-Level Man NEW!
Array of Abilities
SCREAMS Intervention Strategies
Neurobehavior in Adolescents and Adults
Fighting with your Teenager
Robin LaDue on Psychosocial Issues
The Visible Teen with the Invisible Disability
Susan Doctor on the Environment
Susan Doctor on Intervention Strategies
Deb Evensen's 8 Magic Keys
Judith Kleinfeld's Testimony to the Senate
Diane Malbin on Understanding FAS/ARND
The Organicity of FAS/FAE by Morse, Rathbun, Malbin
and all the articles in this section:
FAS/FAE Behavior Issues
If you are caring for teens who have been placed in a residential facility, you probably will be dealing with a combination of FAS and mental health disorders like RAD or Bipolar. Here are a few links just for those issues:
FAS and RAD
FAS and Attachment
This may seem like a lot to read. But you won't be sorry if you read each and every one. The more you learn, the better you will understand their behavior, and the easier it will be to manage their behaviors.
Here is one of the most important things to remember: Of all teens and adults with FAS/FAE, 94% have mental health issues, the major one in adulthood being clinical depression, with 25% attempting suicide and almost half considering suicide. I believe that Dr. Calvin Sumner says it best: "The greatest obstacle our kids must overcome is chronic frustration from unreasonable expectations of others." Since their social/emotional development is usually stunted at the level of a 5 or 6 year old, we need to keep that in mind when setting goals and consequences. Also, remember that they are probably not going to learn from consequences, but they will learn from being shown how, from good role models, from practicing how to behave/react appropriately.
For a humorous look at raising teens with FAS: 50 Ways to Peeve Your Mother
and "The World's Meanest Moms"
This web page http://www.come-over.to/FAS/teens.htm has been updated July 22, 2004
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