Heart-wrenching and all-too familiar story of Fetal Alcohol Syndrome (FAS)
- Thread starter TerryJ2
- Start date
W
Weary for Hope
Guest
Wow - heartbreaking.
Also - so upsetting to me - why do 40,000 babies get conceived to people who abuse their bodies and other people (like me) can't even get pregnant? I DON'T UNDERSTAND.
But that's besides the point. My son is really tough to deal with and I've wanted to give up several times, but this story definitely puts it into perspective.
Also - so upsetting to me - why do 40,000 babies get conceived to people who abuse their bodies and other people (like me) can't even get pregnant? I DON'T UNDERSTAND.
But that's besides the point. My son is really tough to deal with and I've wanted to give up several times, but this story definitely puts it into perspective.
svengandhi
Well-Known Member
That is so sad. My oldest son's girlfriend's father was an Fetal Alcohol Syndrome (FAS) baby adopted from an Indian reservation by a loving couple who adopted a number of other children. He never lived with his mom, an alcoholic, and was put up for adoption at birth. He struggled with Learning Disability (LD)'s and behavioral issues. His substance abuse began in his early teens. Sadly, he was never able to fully conquer his demons and he died following an alcohol related incident. His children loved him dearly and I feel badly that someone who seemed like such a wonderful person died such an awful death.
pepperidge
New Member
As a mom to one if not two Fetal Alcohol Syndrome (FAS) kids it is infuriating that there is so much misunderstanding particularly of school officials out there. For any of you out there who suspect your kid may have Fetal Alcohol Syndrome (FAS), I have found that psychiatrists have little understanding. And schools are hopeless.
pepperidge
New Member
One thing they know is that it is very day specific. Drinking early on in pregnancy is much worse than drinking later in pregnanacy. It is very tied to what is developing at the particular moment of the pregnancy. Andthe effects of alcohol seems to be worse than drugs for the most part.
I have not found anything comparable to do this board that deals with issues of Fetal Alcohol Syndrome (FAS) children. One thing I have found is that they look normal. They don't even have the external behavior markers than some autistic kids do that says, this child is not normal. People just think they are misbehaving, overly enthusiastic, bad,etc and that it is bad parenting or whatever that is at fault. It is really brain damage. I am going to try to attach something from a fetal alcohol center written about Fetal Alcohol Syndrome (FAS) kids that does a great job at capturing osme of hte issues i deal wiht daily. It may resonate with some of you.
The Visible Kid
with the
Invisible Disability
© 2003 Teresa Kellerman
Hey, look at me! Do you think I'm cute? On the outside, I look just like any other kid - friendly, playful, and full of energy. But there's something about me on the inside that you can't see - how my brain was messed up before birth by alcohol. You can't see the tangled connections and all the little empty spaces in my brain. Unless you can see inside my head, you can't see that I have - what's it called? Static En-ceph-al-o-pathy.
But what you can see is how silly I act when I am out in public. You can see how immature I am, especially when you compare me with other kids my age. And you always notice when I get out of control and "lose it" when things get to be too much for me to handle.
Can you see how embarrassed I get when I can't control my behavior? And how frustrated I get when I forget the rules - again? And my anger when I get blamed for trouble over and over? You probably can, because you can see my feelings plastered all over my face.
You say I'm a problem. But I'm not a problem. I have a problem. I have Static Encephalopathy. The doctor told me what that means - my brain damage won't get any worse, but it won't get any better either. It's forever.
You can always hear me, because I talk a lot, to anyone who will listen. When you ask me a question, an answer just pops out, whether it's true or not. I'm good at telling you what you want to hear. I can fool people into thinking I really understand what they are telling me. I don't want anyone to think I'm stupid.
I also act like I can take care of myself. But it's hard for me to figure out time and money. I can't even make change for a dollar. I can't remember what I got in trouble for yesterday. You probably think I should learn from my mistakes. But I can't. It's not that I don't know the rules - I do. It's not that I don't understand consequences - I do. I just can't make myself do what I know I should do. I don't know why - I just can't.
Maybe you notice that I don't have a lot of common sense. I'm the one who goes along with the wrong crowd, who gets sucked into doing some really stupid things. And I'm the one who usually gets caught.
My teacher always tells me, "You should know better than that!" And I do know better. I just can't be better. The doctor says it has to do with "lack of impulse control and poor judgment" are from damage to my brain before I was born.
My Dad says, "Just grow up." He says I act half my age. The researchers say "arrested social development" is common in kids like me who are alcohol affected. That means the only thing that will grow up will be my body.
Everybody can see that I'm friendly and affectionate. But nobody can see how lonely I am. I have lots of "friends" but they never come over or call me. I don't have a best friend. But I pretend like I do. I wish I had a dog.
I'm not afraid of anything or anybody. I'm not afraid of strangers, or of heights, or of unsafe sex. I'm not afraid of the dangers of the real world. Should I be? Maybe I forget. Even when people tell me things over and over, I still forget. The psychologist says I have a problem processing information, that I have memory deficits and attention deficit disorder and hyperactivity. Yep, that's me all right!
You probably think my mom is over-protective. But she knows how easy it is for others to take advantage of me. Sometimes I think my mom is too strict, because she doesn't let me go to the park by myself or spend the night at my cousin's. I guess she knows that I can't behave properly unless she's right by my side, and she doesn't want me to get into big trouble. Like last year when I got too "friendly" with the little girl next door. I didn't know that was "inapprorpriate." (I hate that word.) Mom said I could get arrested for doing something like that, which really scared me. But my conscience doesn't seem to work right. I don't want to make people mad. I don't want to be "inappropriate." I don't want to be bad.
I just want to be accepted, and understood. Not blamed and shamed. I want to be appreciated for the good things. Do you notice those?
I want you to care, even when I act like I don't. I want to be respected. And I need you to be a good role model for me so I can learn to be respectful too.
And most of all I don't want you to say bad things about my birth mom because she drank when she was pregnant. Maybe she couldn't stop drinking. Maybe her doctor told her it was okay to drink when she was pregnant. Maybe she just did what everybody else was doing. Im not making excuses for her behavior, or for mine. Maybe she didn't think about what she was doing. Maybe she had Static Encephalopathy too, just like me. But nobody could see.
I have not found anything comparable to do this board that deals with issues of Fetal Alcohol Syndrome (FAS) children. One thing I have found is that they look normal. They don't even have the external behavior markers than some autistic kids do that says, this child is not normal. People just think they are misbehaving, overly enthusiastic, bad,etc and that it is bad parenting or whatever that is at fault. It is really brain damage. I am going to try to attach something from a fetal alcohol center written about Fetal Alcohol Syndrome (FAS) kids that does a great job at capturing osme of hte issues i deal wiht daily. It may resonate with some of you.
The Visible Kid
with the
Invisible Disability
© 2003 Teresa Kellerman
Hey, look at me! Do you think I'm cute? On the outside, I look just like any other kid - friendly, playful, and full of energy. But there's something about me on the inside that you can't see - how my brain was messed up before birth by alcohol. You can't see the tangled connections and all the little empty spaces in my brain. Unless you can see inside my head, you can't see that I have - what's it called? Static En-ceph-al-o-pathy.
But what you can see is how silly I act when I am out in public. You can see how immature I am, especially when you compare me with other kids my age. And you always notice when I get out of control and "lose it" when things get to be too much for me to handle.
Can you see how embarrassed I get when I can't control my behavior? And how frustrated I get when I forget the rules - again? And my anger when I get blamed for trouble over and over? You probably can, because you can see my feelings plastered all over my face.
You say I'm a problem. But I'm not a problem. I have a problem. I have Static Encephalopathy. The doctor told me what that means - my brain damage won't get any worse, but it won't get any better either. It's forever.
You can always hear me, because I talk a lot, to anyone who will listen. When you ask me a question, an answer just pops out, whether it's true or not. I'm good at telling you what you want to hear. I can fool people into thinking I really understand what they are telling me. I don't want anyone to think I'm stupid.
I also act like I can take care of myself. But it's hard for me to figure out time and money. I can't even make change for a dollar. I can't remember what I got in trouble for yesterday. You probably think I should learn from my mistakes. But I can't. It's not that I don't know the rules - I do. It's not that I don't understand consequences - I do. I just can't make myself do what I know I should do. I don't know why - I just can't.
Maybe you notice that I don't have a lot of common sense. I'm the one who goes along with the wrong crowd, who gets sucked into doing some really stupid things. And I'm the one who usually gets caught.
My teacher always tells me, "You should know better than that!" And I do know better. I just can't be better. The doctor says it has to do with "lack of impulse control and poor judgment" are from damage to my brain before I was born.
My Dad says, "Just grow up." He says I act half my age. The researchers say "arrested social development" is common in kids like me who are alcohol affected. That means the only thing that will grow up will be my body.
Everybody can see that I'm friendly and affectionate. But nobody can see how lonely I am. I have lots of "friends" but they never come over or call me. I don't have a best friend. But I pretend like I do. I wish I had a dog.
I'm not afraid of anything or anybody. I'm not afraid of strangers, or of heights, or of unsafe sex. I'm not afraid of the dangers of the real world. Should I be? Maybe I forget. Even when people tell me things over and over, I still forget. The psychologist says I have a problem processing information, that I have memory deficits and attention deficit disorder and hyperactivity. Yep, that's me all right!
You probably think my mom is over-protective. But she knows how easy it is for others to take advantage of me. Sometimes I think my mom is too strict, because she doesn't let me go to the park by myself or spend the night at my cousin's. I guess she knows that I can't behave properly unless she's right by my side, and she doesn't want me to get into big trouble. Like last year when I got too "friendly" with the little girl next door. I didn't know that was "inapprorpriate." (I hate that word.) Mom said I could get arrested for doing something like that, which really scared me. But my conscience doesn't seem to work right. I don't want to make people mad. I don't want to be "inappropriate." I don't want to be bad.
I just want to be accepted, and understood. Not blamed and shamed. I want to be appreciated for the good things. Do you notice those?
I want you to care, even when I act like I don't. I want to be respected. And I need you to be a good role model for me so I can learn to be respectful too.
And most of all I don't want you to say bad things about my birth mom because she drank when she was pregnant. Maybe she couldn't stop drinking. Maybe her doctor told her it was okay to drink when she was pregnant. Maybe she just did what everybody else was doing. Im not making excuses for her behavior, or for mine. Maybe she didn't think about what she was doing. Maybe she had Static Encephalopathy too, just like me. But nobody could see.
B
Bunny
Guest
That is such a sad story and I would not doubt that there are more children with Fetal Alcohol Syndrome (FAS) than people really think there are.
I truly believe that is my difficult child's main problem. Of course, the doctor's never diagnosed her as such, but my son met her bio mom when she was probably 3 months pregnant and was drinking 5 to 10 drinks a day. She says she didn't know she was pregnant - but I believed she did, but just didn't admit it until it became obvious.
It is such a struggle - some days I can hardly stand to be around her. She is good at making excuses and will not try things we suggest to make things easier - like a list of assignments kept where she can double check. I got a call yesterday from her social studies teacher regarding her missing book... turns out it has been left in literature class and that teacher has been asking her for two weeks to take it with her. She finally got it when I threatened to take her to the bank and withdrawal money from her savings to pay for a new one.
Reading that article really sounded as if it was written by my difficult child... if she had the insight to see herself as everyone else does... which she doesn't.
Like this morning, we have listened to her sing for the last 30 minutes... but when little sis started singing - it took 15 seconds for her to tell her how irritating her singing is. KSM
It is such a struggle - some days I can hardly stand to be around her. She is good at making excuses and will not try things we suggest to make things easier - like a list of assignments kept where she can double check. I got a call yesterday from her social studies teacher regarding her missing book... turns out it has been left in literature class and that teacher has been asking her for two weeks to take it with her. She finally got it when I threatened to take her to the bank and withdrawal money from her savings to pay for a new one.
Reading that article really sounded as if it was written by my difficult child... if she had the insight to see herself as everyone else does... which she doesn't.
Like this morning, we have listened to her sing for the last 30 minutes... but when little sis started singing - it took 15 seconds for her to tell her how irritating her singing is. KSM
donna723
Well-Known Member
This is just heartbreaking! So much damage done to so many children, and all of it completely preventable!
We have a child like this in our family who is 17 now. He was adopted at birth by my ex's brother and his wife, so this boy is my kids' first cousin. They had no idea that he would be a "special needs" child when they adopted him but really rose to the occasion. Any info the agency had on the bio parents they kept to themselves so it has taken years to try to unravel the mystery. He was a beautiful baby but was premature and had very little muscle tone as a baby, had heart surgery when he was about two and finally started walking after his surgery. He could hear but didn't speak and learned sign language, finally started speaking at about four (you can't shut him up now!) He still has many neurological problems that affect his balance when walking. He is a total sweetheart and the whole family adores him. He goes to a special school at a children's hospital and has been part of several studies by top-notch doctors. And after all these years their diagnosis is Fetal Alcohol Syndrome (FAS), probably complicated by whatever drugs his bio mother might have taken while pregnant. Or in other words, what happened to him was COMPLETELY PREVENTABLE, which is just heartbreaking! He could have been a completely normal child, but instead he will never be able to live independently, will never be able to do the things that other boys his age can do, will require constant care and supervision all his life and his parents aren't getting any younger. These wonderful people adore him and have devoted their entire lives to caring for him but it is such a tragedy that didn't have to happen.
We have a child like this in our family who is 17 now. He was adopted at birth by my ex's brother and his wife, so this boy is my kids' first cousin. They had no idea that he would be a "special needs" child when they adopted him but really rose to the occasion. Any info the agency had on the bio parents they kept to themselves so it has taken years to try to unravel the mystery. He was a beautiful baby but was premature and had very little muscle tone as a baby, had heart surgery when he was about two and finally started walking after his surgery. He could hear but didn't speak and learned sign language, finally started speaking at about four (you can't shut him up now!) He still has many neurological problems that affect his balance when walking. He is a total sweetheart and the whole family adores him. He goes to a special school at a children's hospital and has been part of several studies by top-notch doctors. And after all these years their diagnosis is Fetal Alcohol Syndrome (FAS), probably complicated by whatever drugs his bio mother might have taken while pregnant. Or in other words, what happened to him was COMPLETELY PREVENTABLE, which is just heartbreaking! He could have been a completely normal child, but instead he will never be able to live independently, will never be able to do the things that other boys his age can do, will require constant care and supervision all his life and his parents aren't getting any younger. These wonderful people adore him and have devoted their entire lives to caring for him but it is such a tragedy that didn't have to happen.
pepperidge
New Member
One thing to remember about Fetal Alcohol Syndrome (FAS) is that is is a spectrum, some kids are much more severely affected and the constellation of symptoms differs from kid to kid. Also I believe that sometimes the mental health issues that may lead some birthmothers to drink (self medicate) may be heritable to some extent so it possible to have a kid with Fetal Alcohol Syndrome (FAS) and say major depression or bipolar or whatever.
My youngest had a profund speech delay--now no issue, is normal cognitively but has some processing issues, but is very impulsive. What is sad about these kids is that they get such negative feedback from everyone because their social behavior leaves a lot to be desired. So you begin to see secondary effects (anger, defensiveness) that come from having the world constantly on your case the whole time.
My youngest had a profund speech delay--now no issue, is normal cognitively but has some processing issues, but is very impulsive. What is sad about these kids is that they get such negative feedback from everyone because their social behavior leaves a lot to be desired. So you begin to see secondary effects (anger, defensiveness) that come from having the world constantly on your case the whole time.
