tigger_gal
04-04-2009, 04:31 AM
please note: I am not a doctor, a nurse, nor any type of person related to being able to DX anything. I am just sharing my story with you.
Do you know what FASD is? Fetal Alcohol Sydryom Disorder. Did you know that only 10 percent of children with FASD have the facial features even if the biological mother drank and got drunk every day of her pregnancy? Did you know when you go out and drink 3 beers and a couple shots, or mixed drinks that is exactly what your baby is drinking? Did you know, that your body can absorb and dispose of alochol processing it through your liver and become sober quicker and your baby stays drunk because they don't have the means to dispose of the alochol! Did you know that every time you take a drink while you are pregnant you destroy your babies brain cells. Did you know that when you drink that your babys brain is soaking in alcohol rather then the water it should be in? Do I have you thinking yet????
My life revolves around two presious innocent children that were born FASD because their biological mother drank during her pregency. My son has a brain based injury because of this. That means he has many problems, and his brain did not fully develope, cutting ouff the brais cells he needs to function correctly. He has no control over his impulsives, he cannot at any given time sit still, not even to watch tv, or to eat. He has no idea how to make his mind work together, because there are dead brain cells. His brain was not developed propley because his biological mother didn't have the brains not to drink. Do you know you are on gard 24/7 because at any given moment he can do something that could harm him, his siter or the family pets? think about what you are doing to your child. You think there are problems at home, try taking him into a store. Laying in the floor screaming and kicking! Think its still ok to drink while you are pregnant? Think again, you have no clue what life is all about with a child with FASD, better yet having 2.
Every day I listen to Jake screaming and watch exterme mood changes and tantrums. but Jake is not his physical age 3 1/2, he is more like 20 months in a mental age. He's easly frustrated, and if he don't want to do something he is not going to budge at all. The don't like to be touched, he says it hurts him, he has never been affectionate, cuddly and wantinging to sit in your lap. He hads many sensory issues, that take a toll on daily life, and you have to be on a structured schedule to prevent massive out bursts. He has recently allowed some hugs, kisses, and sitting in your lap, but, only if he wants to and its his idea. Jake is refusing to do things in school and they are getting sent home for home work. If this is how schooling is going to be I have a very long road ahead of me. Its extremely hard to put Jacob into words. He is a very special child who need constant attention and constant supervision you cant leave him alone for a minute. You have to be a constan shadow over him. The other morning he destroyed my bathroom. He is not even close to being 3 1/2 he is much younger, he refuses to potty train, and thats a tough job. He has his loving moments, and sometimes plays well with his sister, but other times he needs pulled out of the situation and work one on one with him, which then is a screaming match, He has no idea why he did wrong, because those brain cells are dead, and the mind can't process it. . He don't do well in a group of people which brings concern. I have actually given up on help because I am getting denied left and right. I am hanging on to one bit of hope with CARE FASD Program, because with a concrete dx I may be able to get him the help he needs, or the tools to do it my self. Normal parenting techniques don't apply, you have to be simple and say exactly what you mean or he is easly confused, distracted and self absorbed . When you ask him to do something it has to be very simple, like pick up the train, instead of pick up the toy. Triumph class has taught us many things and I think that all placements, and adoptive parents that are taking in an FASD child should take the opportunity of this well structured, and informative class. There are people from Mork and Medicaid taking this class. No one really know the hardship, the devotion, love, tolerance and patience you need to be able to take on a child with fasd, that also has a bi-polar, schizophrenic history from the biological parents, I have 2 of them. People don't understand that they are not there physical age, and have great deal of strength Jake busted my lazy boy couch, it reclined on both ends with a complete metal frame by rocking it and bringing it up off the floor, Savannah can sit in the floor and push the side of the recliner and bring it off the floor and she is 20 months old.
This weighs heavely on your emotions, and your mental health, and lets not forget your marriage. Sometimes you both have different ideas and absolutely disagree. This is why it is important to get the tools to understand what is happening. Sometimes you are totally mentlly drained and you really want to curl up on the couch and just have a few minutes to shut your mind off, but even when the kids are down for the night, it don't mean you can have your grown up time, because the events of the days go through your head andd you are wondering what could I have done differently. Sometime you beg God to make you understand, and desperately want a day alone with out the hussel and bussel of every day. Unfortunately that is not how it works. We as women depend on our husband for a much needs break, but sometimes it is not possible. After working all day, they sometimes need to be alone or need to rest, because the night before the kids stayed up for some unknown reason screaming and crying and he didn't get the sleep he needs to function at his best at work. Where as the stay at home mom may get that break for an hour or so while they nap. I diffently understand, but it still makes me upset because he did have an 8 1/2 hour break without screaming kids!
Here is an example of my days, Yesterday:
Jake gets up, and as usual on the wrong side of the bed, you don't dare talk to him till he speaks first. The challenge of changing his close ends up with him kicking and screaming, then breakfast, he needs to pull every box of ceral out, and all the poptarts to make a decision, then he takes 2 bites and usually wants something different!! Do you do it yes, why becaaue he is such a picky eater, he needs to eat to stay healthy. next getting shoes on and ready for the school bus while he is pushing his sister out of his way, picking her up and moving her, running down the hall screaming NO. AWW atlast the bust comes, my little vacation for 3 hours, providing Savannah naps. That has become a hard one these days. 3:07pm Jake returns, by 4:30 he somehow finds a red permenant marker I couldn't find, and colored both arms from elbow to finger tips. Colored my brand new table cloth and a toy!! How long did that take? long enough for me to pee. and I pee quickly because I have a 3 ounce bladder! love IC. I have to get him cleaned up, and he screamed the entire time IT HURTS!! much like when we are in the car he screams I am stuck get me out of here, refering to the car seat. ok off track!! I went to wash out the red marker out of the rag, which gave him enough time to find the windex, spray it on the floor in his eyes, and threw and busted it on the floor. Have you ever tried to flush out eys on a 3 year old? not fun.. Well we got that done! I went to get clothes and he is hitting his sister. Time Out!!! after that was done I had the pleasure of having a whole bottle of fabreeze sprayed all over the place!! thats a good day my friends.
Every day is a constant struggle, sometimes you and your partner fight because he don't comfort you, just tells you why it happened because you had what ever is right. You can't tell him how you feel or talk to him because you know they will ignore you or they will tell you what you should do! If screams havock on your life, and no one understands. Sometime you walk around aimlessley wondering what can I do to make things better? the answer is nothing, ytou can't make it better, just deal with it and make the best of it. learn how to avoid conflict, and learn the tools to redirect and simplify your life.
I would greatly appriciate having the opptunity to help other people in my situation. After 3 years of continuous struggles and battles for a dx I think I can be of some help to many people that have a child with mental and developmental delays. If you have any questions or want to know more feel free to contact me.
If you read this through I thank you.
Do you know what FASD is? Fetal Alcohol Sydryom Disorder. Did you know that only 10 percent of children with FASD have the facial features even if the biological mother drank and got drunk every day of her pregnancy? Did you know when you go out and drink 3 beers and a couple shots, or mixed drinks that is exactly what your baby is drinking? Did you know, that your body can absorb and dispose of alochol processing it through your liver and become sober quicker and your baby stays drunk because they don't have the means to dispose of the alochol! Did you know that every time you take a drink while you are pregnant you destroy your babies brain cells. Did you know that when you drink that your babys brain is soaking in alcohol rather then the water it should be in? Do I have you thinking yet????
My life revolves around two presious innocent children that were born FASD because their biological mother drank during her pregency. My son has a brain based injury because of this. That means he has many problems, and his brain did not fully develope, cutting ouff the brais cells he needs to function correctly. He has no control over his impulsives, he cannot at any given time sit still, not even to watch tv, or to eat. He has no idea how to make his mind work together, because there are dead brain cells. His brain was not developed propley because his biological mother didn't have the brains not to drink. Do you know you are on gard 24/7 because at any given moment he can do something that could harm him, his siter or the family pets? think about what you are doing to your child. You think there are problems at home, try taking him into a store. Laying in the floor screaming and kicking! Think its still ok to drink while you are pregnant? Think again, you have no clue what life is all about with a child with FASD, better yet having 2.
Every day I listen to Jake screaming and watch exterme mood changes and tantrums. but Jake is not his physical age 3 1/2, he is more like 20 months in a mental age. He's easly frustrated, and if he don't want to do something he is not going to budge at all. The don't like to be touched, he says it hurts him, he has never been affectionate, cuddly and wantinging to sit in your lap. He hads many sensory issues, that take a toll on daily life, and you have to be on a structured schedule to prevent massive out bursts. He has recently allowed some hugs, kisses, and sitting in your lap, but, only if he wants to and its his idea. Jake is refusing to do things in school and they are getting sent home for home work. If this is how schooling is going to be I have a very long road ahead of me. Its extremely hard to put Jacob into words. He is a very special child who need constant attention and constant supervision you cant leave him alone for a minute. You have to be a constan shadow over him. The other morning he destroyed my bathroom. He is not even close to being 3 1/2 he is much younger, he refuses to potty train, and thats a tough job. He has his loving moments, and sometimes plays well with his sister, but other times he needs pulled out of the situation and work one on one with him, which then is a screaming match, He has no idea why he did wrong, because those brain cells are dead, and the mind can't process it. . He don't do well in a group of people which brings concern. I have actually given up on help because I am getting denied left and right. I am hanging on to one bit of hope with CARE FASD Program, because with a concrete dx I may be able to get him the help he needs, or the tools to do it my self. Normal parenting techniques don't apply, you have to be simple and say exactly what you mean or he is easly confused, distracted and self absorbed . When you ask him to do something it has to be very simple, like pick up the train, instead of pick up the toy. Triumph class has taught us many things and I think that all placements, and adoptive parents that are taking in an FASD child should take the opportunity of this well structured, and informative class. There are people from Mork and Medicaid taking this class. No one really know the hardship, the devotion, love, tolerance and patience you need to be able to take on a child with fasd, that also has a bi-polar, schizophrenic history from the biological parents, I have 2 of them. People don't understand that they are not there physical age, and have great deal of strength Jake busted my lazy boy couch, it reclined on both ends with a complete metal frame by rocking it and bringing it up off the floor, Savannah can sit in the floor and push the side of the recliner and bring it off the floor and she is 20 months old.
This weighs heavely on your emotions, and your mental health, and lets not forget your marriage. Sometimes you both have different ideas and absolutely disagree. This is why it is important to get the tools to understand what is happening. Sometimes you are totally mentlly drained and you really want to curl up on the couch and just have a few minutes to shut your mind off, but even when the kids are down for the night, it don't mean you can have your grown up time, because the events of the days go through your head andd you are wondering what could I have done differently. Sometime you beg God to make you understand, and desperately want a day alone with out the hussel and bussel of every day. Unfortunately that is not how it works. We as women depend on our husband for a much needs break, but sometimes it is not possible. After working all day, they sometimes need to be alone or need to rest, because the night before the kids stayed up for some unknown reason screaming and crying and he didn't get the sleep he needs to function at his best at work. Where as the stay at home mom may get that break for an hour or so while they nap. I diffently understand, but it still makes me upset because he did have an 8 1/2 hour break without screaming kids!
Here is an example of my days, Yesterday:
Jake gets up, and as usual on the wrong side of the bed, you don't dare talk to him till he speaks first. The challenge of changing his close ends up with him kicking and screaming, then breakfast, he needs to pull every box of ceral out, and all the poptarts to make a decision, then he takes 2 bites and usually wants something different!! Do you do it yes, why becaaue he is such a picky eater, he needs to eat to stay healthy. next getting shoes on and ready for the school bus while he is pushing his sister out of his way, picking her up and moving her, running down the hall screaming NO. AWW atlast the bust comes, my little vacation for 3 hours, providing Savannah naps. That has become a hard one these days. 3:07pm Jake returns, by 4:30 he somehow finds a red permenant marker I couldn't find, and colored both arms from elbow to finger tips. Colored my brand new table cloth and a toy!! How long did that take? long enough for me to pee. and I pee quickly because I have a 3 ounce bladder! love IC. I have to get him cleaned up, and he screamed the entire time IT HURTS!! much like when we are in the car he screams I am stuck get me out of here, refering to the car seat. ok off track!! I went to wash out the red marker out of the rag, which gave him enough time to find the windex, spray it on the floor in his eyes, and threw and busted it on the floor. Have you ever tried to flush out eys on a 3 year old? not fun.. Well we got that done! I went to get clothes and he is hitting his sister. Time Out!!! after that was done I had the pleasure of having a whole bottle of fabreeze sprayed all over the place!! thats a good day my friends.
Every day is a constant struggle, sometimes you and your partner fight because he don't comfort you, just tells you why it happened because you had what ever is right. You can't tell him how you feel or talk to him because you know they will ignore you or they will tell you what you should do! If screams havock on your life, and no one understands. Sometime you walk around aimlessley wondering what can I do to make things better? the answer is nothing, ytou can't make it better, just deal with it and make the best of it. learn how to avoid conflict, and learn the tools to redirect and simplify your life.
I would greatly appriciate having the opptunity to help other people in my situation. After 3 years of continuous struggles and battles for a dx I think I can be of some help to many people that have a child with mental and developmental delays. If you have any questions or want to know more feel free to contact me.
If you read this through I thank you.