FAS/FAE Page
to help erradicate Fetal Alcohol Exposure
This page contains alot of information. It can be scrolled, and it can be navigated easily through this contents box.
If you're in the Williamsburg Area and would like to be connected to our family support group, FAS Helping Hands, click here for more information.
| Dedication | FAS/FAE Links | FAS/FAE References | My FAS Mini-Seminar |
| FAS Printable Pamphlet | My Advice to Parents | Family Testimonials | Return to Home |
This page is dedicated to my son. He is actually my step-son, but I have been his mommy since he was two months old. He lives every day with irreversible organic brain damage caused by prenatal exposure to alcohol. This has created a disability called Fetal Alcohol Effects in my son.
He also is diagnosed by his neurologist as FAE with ADHD, neuro-developmental and neuro-behavioral difficulties. The psychiatrist he used to see says he is A-symptomatic ADHD. Before he began taking medications many said he was the busiest kid they had ever seen, and some offered much unsolicited parenting advice when he suffered a public behavior episode.
However, his Daddy and I say he is the kindest, sweetest, most loving child; and he is very busy (hyperactive to the extreme), observant (attention deficit), out-going (low attention span), highly interactive (low-sensory threshhold...which means the more he seees, hears, smells, tastes, feels, the harder it is for him to maintain control of his behavior), and he is quick to make decisions (no impulse control). Regardless of his condition or his behaviors, my son is a very intellegent kid who just happens to have unseen brain damage.
Ok folks, before you send out the lynch mob for his birth-mother; I'd like for you to consider that most doctors warn us when we are pregnant not to smoke, but how many of you moms were actually told that alcohol consumption of any form (even cold medicine) in any dose could seriously damage the brain and/or organs of your developing baby? I have given birth to two very healthy girls one in 1988 and another in 1995, during neither pregnancy was I told never to drink. As a matter of fact with my first pregnancy, I was told to drink wine coolers to calm myself while in the withdrawls from cigarette smoking (I had quit cold-turkey when I found out I was pregnant). And because I was ignorant of FAS/FAE I did exactly what my doctor told me to do, and I can honestly say that I am blessed by our Lord Jesus Christ that my daughter is healthy with no brain damage.
My son may not be the child of my body, but he is the son of my heart. I have been his Mommy since he was two months old. His Daddy may have made a poor decision in choosing his birth-mother as a companion, which causes him much guilt ... but thank God he made poor judgement else we would not have this wonderful child in our lives to love.
It is my obligation to my son to tell anyone who will listen about him and about Fetal Alcohol Syndrome and Fetal Alcohol Effects, so that they might learn what it is to alter a child with alcohol. That knowledge might help someone stop poisoning their child or might help them influence someone else to stop.
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FADU - Fetal Alcohol Drug Unit
at University of Washington School of Medicine directed by Ann
Streissguth, who has done the most valuable research on FAS/FAE -
the best research information site
FASCRC - Fetal Alcohol Syndrome
Community Resource Center - the best family information site
FASDPN - FAS Diagnostic
Prevention Network at Children's Hospital and Medical Center at
the University of Washington School of Medicine - wonderful
information site.
NOFAS - The National Organization on Fetal Alcohol
Syndrome - resources & advocacy
Northeast Consulting and
Training Center FAS/FAE treatment, seminars, and parents info
ARIUM - Addiction Resources, Information,
Utilization & Mission's FAS page - info, posters &
resources
FASA - FAS Alaska lots of info
ARBI - Alcohol Related Birth Injury / FAS/FAE
Resource Site - a wonderful family info site
FAS STARS - Pictures and stories of
individuals with FAS/FAE ... Your are not alone.
UNC - Bowles Center for
Alcohol Studies at University of N.C. School of Medicine at
Chapel Hill including research done by K. Sulik et.al. on
dismorphology of FAS
FASCETS - Fetal Alcohol Syndrome Consultation,
Education & Training Services Inc. - associates D. Malbin, J.
Cropp, C. Sirno, S.O-Kacalek
CCSA - Canadian Centre for Substance Abuse -
FAS information guide
TRIUMF - The TRIUMF Project - FAS
Resource Site from Canada
FAS Boards - FAS Support / Message
Boards at Parents Place on the web, view as a guest or join and
post
Links about disabilities:
IRSC - Internet Resources for
Special Children - FAS info etc. under "disability
links"
SEA - Special Education Advocate - information
on Special Ed. Laws
NICHCY - National Information Center for Children
and Youth with Disabilities
Internet Mental Health Information on many
disorders, treatment and medications.
A wonderful parent's site on the Challenge of Difficult
Children.
Homeschooling - All-In-One Homeschool Resource Center...lots of help if you are thinking about homeschooling.
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I strongly recommend that anyone living with, working with, or concerned about a child that has FAS/FAE or if you think a child has FAS/FAE first research on the net at the links I've listed above. I've listed them in order as to the amount of information and importance to me. But I also recommend the following books, there are more of course, but I feel these are extremely valuable and full of necessary information. They are listed in my personal order of importance, best first.
1. Fetal Alcohol Syndrome: A Guide for Families and Communities; by Ann Streissguth (1997). Brookes Publishing Company. (this book is invaluable in the amount of information including diagnostics, secondary disabilities, advocacy, teaching FAS/FAE children and a list of support groups and agencies.)
2. Reaching Out to Children with FAS/FAE; by Diane Davis (1994). The Center for Applied Research in Education. (this book I would recommend to anyone with a child with FAS/FAE as a primer for educating and advocating for your child)
3. The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Ann Streissguth and Jonathan Kanter (eds.). (1997). University of Washington Press. (this book is a must for those researching the depts of FAS/FAE and interested in what has been learned around the world. It is a compilation of information from the 1996 conference on FAS/FAE held at the University of Washington School of Medicine in Seattle).
4. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and Treatment. Institute of Medicine (IOM). (1996) National Academy Press. (this is compiled from a vast report put together for Congress...very deep, complicated reading but worth the effort if you want to know how the government of the USA views FAS/FAE).
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My FAS Mini-Seminar
(This is the written text of a mini-seminar I present to different groups to teach about FAS/FAE. It is quite long to read, but only takes about a half hour to present. Please feel free to use it at your school, community group, or church)
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"Fetal Alcohol Syndrome and Fetal Alcohol Effects: Stopping the Plague One Child at a Time"
I'd like to take some time to teach you about a plague that's spreading through our country like a wild-fire.
This plague is something called fetal alcohol syndrome and fetal alcohol effects. You will hear me call them FAS and FAE. Doctors have a whole list of names they use, but no matter what name you give it, they all mean one thing: a mother drank alcohol during her pregnancy and caused irreversible brain damage to her child.
Now I know some of you may be thinking that you don't need to hear about this because you aren't an alcoholic or you don't drink. But let me assure you that you will at some point in your life be affected by FAS or FAE.
If you are now or become a parent, your children will go to school with alcohol effected children, that is a fact. You may become the parent, the aunt or uncle, or even the grandparent of an alcohol effected child either by birth or by adoption, maybe you will just live in the same neighborhood or be a friend to someone raising an alcohol effected child.
Let me explain why telling you about FAS and FAE is so important to me.
(Here you would want to insert your own personal introduction. Mine continues to the ****** marks)
I am the mom of a little boy who is the victim of pre-natal exposure to alcohol. My son has fetal alcohol effects because his birth mother, who is not an alcoholic and apparently didn't have a "Drinking problem", consumed enough alcohol to be intoxicated at least once that we know of when she was about 4 months pregnant with him.
To everyone around him my son is an energetic, happy, healthy, little boy, who looks just like his peers, who goes to school and to church, who plays games and occasionally let's his adventurous spirit get the best of him, not unlike the other seven-year-olds.
But my son has to take medications twice a day, seven days a week, 12 months a year in order to appear to be like his friends, because he has FAE. His ADHD, neuro-developmental and neuro-behavioral difficulties are all caused by irreversible brain damage.
It is my job as his Mommy to try to help him learn everything he can to function as normally as possible. But it is my obligation to him in my heart to try to make it so that someday no more children will be born with the devastating affects of prenatal alcohol exposure.
That conviction has kept me in libraries or on the internet researching FAS and FAE for the past five years. Before we got "plugged in" to the internet I spent from two to ten hours a week in libraries reading everything I could get my hands on about FAS and alcohol abuse and now I spend just as much time on the internet reading the latest FAS research results and counseling other parents in the same situation by e-mail. Soon I will try to build an FAS network for other parents like us here.
Think of this for just a moment, if you were in the store and a little kid about three years old was yelling and laughing, pulling his mom's hair and wiggling around in the cart so bad that she was physically struggling to keep the thing from flipping over with him in it, what would you think? I can tell you that I've been given plenty of advice from people when this happened.
If that is my son in the grocery store, he's out of control because the isles of constantly changing shapes and bright colors of the items on the shelves, the noise and constant movement of people around him, and the music over the intercom, compunded by the bombardment of various changing, strong smells like the detergent isle and the produce department have completely overwhelmed his senses so he cannot think.
What troubles me most about raising my son is that nothing I can do will ever change the fact that he was prenatally exposed to alcohol and will always have neurological damage as a result. There is no band-aid big enough for his booboo. He will most likely always be dependent upon medication to be able to think cognitively, and will probably always need us or someone else to help him with daily living skills. But above all, no matter how much I teach him, no matter how much he loves Jesus and tries to be like Him, someone will always be able to lead him astray, because he cannot resist the impulse to follow.
Now you might think I would be angry at his birth mother, but no matter how hard I try I cannot hate her, because I have two girls of my own, one is 11 and the other is 4. During neither pregnancy did my doctors tell me that alcohol could damage my child. As a matter of fact I was told that as long as I didn't get drunk often I would not hurt my baby with occasional drinking in moderation. I have asked many women if this was their experience and most say it was.
(**********end of my personal introduction)
Now let me try to enlighten you with some of my knowledge about fetal alcohol syndrome and fetal alcohol effects.
FAS and FAE is a cornucopia of disabilities caused by irreversible organic brain damage which is the result of prenatal exposure to alcohol. Organic means it was not caused by a traumatic injury, but is a part of growth.
FAS/FAE does not go away over time, it isn't outgrown, there is no magic cure, no medication to erase the symptoms, there is no educational system to teach a person out of it. For a family and the community FAS and FAE means a lifetime of coping with the differences in a person's brain that grew wrong, functions wrong and will continue to do so.
Full Fetal Alcohol Syndrome is characterized by growth deficiencies in height and weight, central nervous system damage and by specific facial characteristics in childhood. FAS has been diagnosed by these characteristics and knowledge of alcohol use by the mother since it was named in 1973.
The only difference between FAS and Fetal Alcohol Effects is a lack of some of the physical characteristics and sometimes a slightly higher IQ.
Research at the University of Washington School of Medicine and the University of North Carolina at Chapel Hill has proven that the unborn cannot be saved from these problems simply because the mother doesn't drink all the time in large quantities. Malformations in varying degrees have been found in experimental research when one dose of alcohol was consumed during a specific window of time early in pregnancy, as well as with prolonged exposures in a wide range of dosages. So there is no safe dose of alcohol when you are or might be pregnant.
The discriminating facial characteristics of FAS include a small head, flattened mid-face, short eye-slits (normal eye-slits are the same length as the nose bridge), a lack of ridges between the nose and upper lip, and a thin upper lip. However other facial characteristics associated with FAS are epicanthal folds not associated with Indian or oriental heritege or downs syndrome, a low nasal bridge and short nose length. Minor ear abnormalities, a small pointed chin, elongated area between the nose and upper lip, and a long or protruding forehead, are also associated with FAS.
These facial characteristics commonly become less apparent as the child ages into the teen years and are sometimes undetectable in adulthood.
Central Nervous System damage manifests itself in FAS/FAE individuals primarily as mild to moderate mental retardation, attention deficits, behavior dysfunction, motor skills dysfunction and hyperactivity.
Specifically those with FAS/FAE often have high spoken vocabulary skills which masks their disabilities, but they have difficulty translating verbal directions into action and they frequently do not understand things spoken to them at the same vocabulary level they use.
FAS/FAE individuals cannot usually link cause to effect, cannot see similarities and have great difficulty generalizing information. They have trouble understanding abstract concepts like time, so organization skills are limited. They are usually "low sensory threshold" which means everything they see, smell, taste, hear, and touch easily overstimulates them into hyperactivity or aggressiveness. This is usually viewed by others as willful misconduct rather than uncontrolable neurological disfunction.
FAS/FAE individuals most often are not able to interpret social cues from others which presents as poor judgement skills and allows them to be easily led into criminal or inappropriate behaviors. This also makes them easy targets for abuse.
They are sometimes overly physical because of extreme or low sensitivity to touch. They have chronic memory problems which translates into poor academic progress usually begining around the third grade. That with their inability to translate verbal directions into action and inability to retain learned behaviors means difficulty on the job and in school.
The face and brain are the most severely affected, but other body parts and organs commonly show the effects as well. FAS/FAE individuals show increased occurrences of eye abnormalities, including blindness and nearsightedness, bone abnormalities especially in the teeth, hands, feet and vertebrae, heart defects and kidney abnormalities.\par As you can see the possibilities are endless.
Let's take a look at some history if you will.
The first scientific documentation about effects of prenatal alcohol exposure was done in France in 1968, however that was only published locally and only in French. It was in 1973 that American researchers forged a link between certain abnormalities and alcoholic mothers, which began an avalanche of spiradic research around the world.
However history tells us that it has been known long before the 70s that alcohol could damage the unborn. In the book of Judges in the Bible an angel of the Lord tells the mother of Samson that she will conceive a son and that during her pregnancy she is "to drink no wine or fermented drink"... he says this twice. But let's not forget that Jesus himself said it's better to hang a millstone about your neck and fling yourself into the ocean than to harm one of his little ones.
Proverbs, Isaiah, Ephesians, and Galatians all contain passages specifically warning about drinking and drunkenness being contrary to the Spiritual nature of God, of it being part of sinful nature contrary to the Spirit, of it poisoning the life of man. I am sure there are others that I didn't find.
Let me quote to you Proverbs 23:31-32 "Do not gaze at wine when it is red, when it sparkles in the cup, when it goes down smoothly! In the end it bites like a snake and poisons like a viper."
We have all seen or heard how alcohol has destroyed the lives of many people in our society. It cripples and kills even "good people", tears apart their families and ruins their children's self esteem, so why does it appear to be such a shock for our society to hear that it destroys the brains of our unborn children?
Aristotle wrote Foolish, drunken and harebrained women most often bring forth children like themselves, morose and languid.
Ancient Carthage observed a ritual that forbade the drinking of wine by the bridal couple so that a defective child would not be conceived.
A 1726 report by the College of Physicians to the British Parliament stated that prenatal drinking is a cause of weak, feeble and distempered children.
In 1834 the British House of Commons stated that infants born to alcoholic mothers sometimes had astarved, shriveled, and imperfect look.
In 1901 a doctoral thesis reported a high proportion of weak and poorly developed infants, early infant demise, epilepsy and idiocy among the children of alcoholic mothers.
In 1957 a medical thesis in Paris described 100 foundling home children born to alcoholics with virtually the same malformations used today to recognize FAS. The writer concluded that maternal alcoholism posed grave dangers to the developing fetus and child.
Yet it was in the late 60s and early 70s that several studies of alcoholic mother's children were linked together finding the same results, and it was an article about these findings published by researchers at the University of Washington and King County Hospital in Seattle in June of 1973 that brought world-wide attention to the conditions as a birth defect. In the years since landmark studies have proven over and over the effects of alcohol on the unborn and formed discriminating evidence of the devastation. But we have yet in this day of instant communication done something to teach everyone about the things I am telling you today.
We cannot say the same about HIV. I remember the packets about HIV coming in the mail to every American household, do you?
Now let's move on to the life children with FAS and FAE can expect to live if we do not as a society do something to stop this plague.
The Fetal Alcohol and Drug Unit (FADU) at the University of Washington School of Medicine recently published the results of 23 years of research information compiled from 1992 through 1996 for the Centers for Disease Control about secondary disabilities affecting those with FAS and FAE. It involved 415 individuals from 6 to 51 years old, 33% of the number were diagnosed with FAS and the remaining 67% with FAE.
If their research holds true in the future then
79% of those with FAS/FAE will never attain employability;
83% will be dependent on someone their entire lives to provide and/or manage their daily finances, medical costs, oversee their personal hygiene and protect them from abuse;
60% will be charged with or convicted of a crime;
60% will be suspended or expelled from school or drop out completely;
50% will be confined to a treatment facility for mental health problems or substance abuse or incarcerated for crimes;
94% will have mental health problems including but not limited to attention-deficit/hyperactivity disorder (ADHD), clinical depression, suicidal tendencies, panic attacks, and psychosis (hearing voices, visions);
45% will display inappropriate sexual behaviors most commonly inappropriate advances, touching and promiscuity;
35% will have problems with alcohol or drug use; and
If they have children 57% will not raise their own children and 30% will give birth to FAS/FAE children.
They also found that some of the primary protective factors to deter these problems are a stable home environment, living in the same home, diagnosis before age 6, never experiencing violence against oneself, and qualifying for services for the disabled. FADU notes that only 11% were diagnosed before age 6 and 72% had experienced physical or sexual abuse. Most live in alternative or foster care homes or with alcoholic parents, and few qualify for services.
This research does not stand alone. It was supported by a conference in September 1996 when 653 people from 8 countries and 39 states gathered at the University of Washington School of Medicine to hear the results of the FADU study and to hear another 62 colleagues from professional backgrounds, national and community organizations, and families share similar findings about FAS/FAE. Research was presented from around the globe including Sweden, England, France, Germany and Canada.
Now let me shatter your dream world with some real statistics.
1. FAS and FAE could be 100% preventable with education and alcoholism intervention.
2. FAS is the leading cause of mental retardation in western civilization, according to the World Health Organization. This is proven by studies done in the United States, Canada, Australia and Europe.
3. FAS has the highest incidence of occurrence of any birth defect. According to numbers compiled by the Canadian Centre on Substance Abuse (CCSA), in the U.S. and Canada for every 10,000 births:
3 will be born with Muscular Dystrophy, 4 with HIV infection, 4 with Cystic Fibrosis, 8 will be born with Spinal Bifida, and 10 with Down Syndrome....this is collectively 29 of 10,000 will have these conditions.
BUT the incidence of occurance for FAS is 20 in 10,000 and another 100 with FAE , which will probably never be diagnosed.
The first collective set of disabilities I mentioned is widely recognized in the medical community and receive publically funded programs for education, medical treatment, financial assistance to the affected and research programs searching for a cure. However, FAS/FAE receives limited public funding for research, and to date virtually no specific funding for education in the public schools or public awareness, doctors are not required to learn about it at all, and the only financial assistance is to families who have become impoverished enough to qualify for limited welfare and medicade or adoptive families medical assistance.
4. CCSA estimates that 66 million children and adults are living with alcohol damaged brains in the world today.
5. According to a 1998 report from the Centers for Disease Control and Prevention in which 100,000 women were surveyed, they found that single women, female students, women with college educations and those with an income greater than $50,000 a year were the highest risk groups for women who drink during pregnancy.
6. The CDC has recently said (1997) that 3.5% of pregnant women consume alcohol that is about 144,000 women drinking during pregnancy every year in the United States. Another study says that about 45% of those babies will have FAS or FAE.
7. A report in the Journal of the American Medical Association said that 25% of pregnant women between 18 and 45 years old used alcohol during the month before their report. Other studies say that more than half of the women of child bearing age do not even know what FAS is.
8. 1996 figures place the cost to U.S. taxpayers at up to $2 billion dollars a year to treat children and adults diagnosed with FAS, this does not include FAE or those undiagnosed.
9. In 1996 Dr. Richard Jackson quoted from studies that contained alarming statistics. 1994- Drinking is most common among women in their twenties, the peak childbearing years. 40% of women in their twenties poled reported drinking to the point of intoxication in the preceding 12 months. 1994-About 50% of pregnancies are unintended and 10% of women do not recognize their pregnancy until at least the 4th month.
Now I'm not sure about you, but I think it's high time we as a society, a church, as the human-race do something to stop this plague. Ladies, if there is the possibility that you may become pregnant, don't drink! If you are pregnant and have been drinking, don't drink again! Men, if you are around a woman who is pregnant, remember that she may follow your example, don't drink! Because without alcohol there is no fetal alcohol syndrome, it's only cause is alcohol. We can make a difference. We can stand up for those who cannot stand for themselves, we can tell someone we know about FAS. We can help families raise their children as a community. We must do something to stop this plague, even if we can only save one child at a time.
Thank you
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Printable Pamphlet
This Pamphlet is done in two pages: front-fas and back-fas. You must use adobe acrobat reader to view and print these pages. First have your adobe acrobat reader program open, then click the dash in the upper right corner (the top one) to minimize it onto your task bar, then, just click on the file here to view it on acrobat reader and print, click to fit to page on print options before clicking ok. To return here click the back button on your browser.
SORRY THIS IS NOT WORKING PROPERLY....I MUST GET A NEW PDF FILE MADE!!
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My Advice to Parents
As the mom of a child with FAS/FAE, I know the turmoil, pain, guilt, frustration and stress that you live in everyday.
The first and best advice I can give you is to love your child regardless of his or her disabilities. Even though your child is different from other children, may have a hard time learning, doesn't always listen, may be distructive to him/herself and his/her or your property, that child still has the capacity to love and to feel love. My son has told me that even when he couldn't show me that he loved me, even when it didn't look like he understood much, he knew I loved him. Before we decided to medicate my son, he was like living with an animal at times, he had no emotions, and learned almost nothing.
Second, learn everything you can about FAS/FAE by reading all the latest research being published, this is simple if you have the internet. It was by learning about FAS/FAE that we understood the reasons behind our son's eradic behavior. It was then that we understood that his behavior had nothing to do with him "being bad" or "being unable or unwilling to learn," but that a damaged brain just can't absorb some information.
Third, if it is possible, tell your child why they are different. I can guarantee you that they will notice by the time they are 7-10 years old. We have to explain to our son over and over about FAS/FAE, because he forgets what he's already learned (just one part of FAS/FAE). This is what we tell him:
When your birthmom (the one that grew you in her belly) was pregnant with you she drank alcohol and it hurt your brain. She didn't do this to hurt you on purpose, but because she didn't know that it could hurt you. Lots of doctors don't tell mommies not to drink alcohol. Because your brain is hurt, it doesn't know where to put things that you learn, so you have to learn them over and over until your brain finds a place to put it. Your brain will never get fixed, but if you never quit trying to learn, maybe your brain will find places to keep all of those things.
My son is 7-years-old and just entered 2nd grade, he compares his brain to an apple. When he picks an apple out of the frig to eat, he gets a very pretty one that is perfect all over. His FAS brain is like the apple after he takes a big bite out. The apple is still perfect, except it has a spot missing, that spot can't be put back, but the rest of the apple is still perfect. He says he has to learn things over alot so his brain can quit hitting the gone spot where FAS took a bite out.
Fourth, when you have the opportunity, tell someone, anyone, everyone about FAS/FAE. If you teach others about FAS/FAE then your child will have the chance to grow up in a world that understands him/her. He/she will see that you want to help other children to not have "hurt brains" like theirs, which is usually very important to them. You will also prevent FAS/FAE from happening at least once. And from personal experience I can tell you, everytime you tell someone about FAS/FAE you give yourself a little more power in your heart over this devastating monster that runs your life.
Fifth, go to battle for your child if it is necessary at school, in the community, or on the play ground. Because, believe it or not, no one else will give a rip if you don't. Do not allow your child to be punished for his/her disability. Hold those who are your child's caregivers (school) for 8 hours a day responsible for the care your child receives. Make them understand that you are your child's advocate, not their enemy. The more you know about FAS/FAE the easier this will become.
Finally, take one day at a time. Be logical not emotional when difficulties arise. Talk to your child the way you want others to talk to you.
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Family Testimonials
I don't measure my daughters (Abby) success at the same level as I would my unaffected children.. But she is very successful.She is healthy, happy, her self esteem is intact and that is success....many parents live with children with disabilities but it doesn't mean they aren't successful. They just live differently and with much color in their lives. Ty is a success story with early intervention, his mom seeking services and being his advocate he will be the best he can be. The road is rough in some places but I know of many success stories..
vicky
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at 7 my son is learning (he has different minor physical
problems in addition to FAS) to NOT GIVE UP! He is not a
quitter.....will be a very strong person I know because of
this.....he is like a dog with a bone-if you say he 'can't do a
certain thing or another because of this or that....he will prove
you wrong every time!
I see this as a success---
vette
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Each of our children damaged by the alcohol exposure still have a piece of who they would have been. Some call it temperment, talent, personality, whatever. if we can find this piece and focus on it and set realistic expectations we can set the success level to where they can reach it.
Example about realistic expectations: before I knew of Abbys brain damage I would lets say send her upstairs to her bedroom to get her sweater and 2 minutes later she would come downstairs without it. So I would naturally get on her about getting her sweater..."Can't you remember anything ...How many times do I have to tell you????
Now that I'm educated and I understand she has a disability I don't set her up for failure... I set her up for success understanding her weakness in the area of memory... So I yell to her about 3 times while she is up there..."Remember your sweater!!! She comes down with it and is praised for what she did right....
I have found one of her natural talents is organization.. She is amazing at putting things together and making some kind of sense out of a mess.... All the teachers at her school ask her to organize their closets, desks whatever....She will be a wonderful person with a physical inventory...Something she can see, feel and touch...So we focus on that in her educational program. Her temper outbursts and inability to read and remeber will be a factor we need to work on but being realistic about her disability I know she will need a supported living enviorment probably forever.
Now Jocie's son is another success story. he is living with his girlfriend who he adores and she is his reality check. He held a job for 2 years as a sheet metal worker. Paid off $3000 in tickets and now has found another job and is working again.
Anns daughter with FAE has a healthy son (she broke the generational cycle of FAS)and is a wonderful mother. She is working with children with some severe disability and they love her. Making her own money but still needing the reality check of mom and dad so she lives at home. She is success!
These kids did not grow out of their disabilty but they are supported in their enviorments with an understanding of their strengths and weaknesses and they are doing fine.
Vicky
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While tucking Katie into bed (almost 11; Adopted at birth, FAS/E) last night, she started crying about having a hard time at school saying it was too hard(5th gr.) I explained that the teachers and I had a meeting and they were trying to help make things easier(which they are) but she said she WAS trying but it still was too hard. Then she started cryiing uncontrollably and said in the saddest voice I've ever heard, "Mommy help me please...I don't want to be this way."
I felt as if someone plunged a knife through my heart. To have a child who is intellengent enough to know she can't compete or keep up with her peers, and is on the verge of completely hating herself. Life is so UNFAIR!!!!!!!!!!! I wanted to scream my rage to the heavens, I know I can help her in every way possible, but because of FAS she will only "attain" so much in life. Yes, she is SOMEBODY important and worthwhile. I would give her MY brain if I could. I mourn for the person she could have been. I think this is what she's doing also.
Paulette
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My 10 year old daughter is playing PopWarner football in our area. She needs repeated help to learn the plays, and because most of the stuff is "hands on" she is retaining. She started out not knowing anything about the game, and is now starting safety on defensive. She is very proud of her accomplishments and next year would like to be a running back. She has asked the couch to help her to learn the offensive plays so she will be ready for next year. Not only does football give her the sensory intergration she needs, she is also building up her self esteem both as a player and a girl.
d.lynn
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Thanks for visiting the FAS/FAE Page, I sincerely hope you learned something that you can pass on to save one child.