Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Welcome, Angie. You've come to the right place...you can vent here anytime, ask questions, make comments, tell funny stories. It feels good to be able to get it out....we've all experienced it! Your daughter sounds like she has a bit of ODD in her (oppositional defiance disorder). My daughter (15) has it as well. I've had to 'go in the backdoor' all of her life to convince her to do things. I have to act like it really doesn't matter to me whether she does it or not...and then I have a better chance of her doing it! Or she'll say "NO" immediately (very impulsive, even on meds), and then she'll go and do what she is asked to do. But she has to immediately respond negatively. Don't know whassup with THAT. It's just her. welcome. maralee -----Original Message-----From: Angie Parsons Sent: Wednesday, March 31, 2004 8:21 AMTo: autism-aspergers Subject: Hi!! I'm New! Hello All, I can't tell you just how excited I am to be in this group!! I joined the other night when I was feeling kinda low, and was wanting to chat with someone who might have an idea of how I was feeling at the time. Most people don't understand and are more than happy to give advice which would not work on my daughter with Aspergers. I spent all of yesterday just reading mail that has come in and I actually cried with Dawn's letter. I can't believe there is actually others out there that feel exactly like I do. My daughter Hannah will be 9 next month, she was my first child and from day one I felt like I was not fit to be a mother. Soon after birth she was removed from my room, her bloodwork was showing a possible bacterial infection, and they wanted to start an iv. That was 11 at night, they brought her back to my room around 5 in the morning to try to nurse, still no iv and she had needle marks on all her hands and feet plus ones from drawling blood from her heals. I was not able to go see her til 9 in the morning at the nursery, I had some problems myself after delivery. I walked into the nursery just in time to see them placing an iv in her head!! What a shock!! Hannah was 5lb 10 oz. and did not have very good veins I guess. To look at her though she looked to be all bones. She was parked by the window for sun, as she had some jaundice, and was given antibiodic to fight the possible infection that never was found. She didn't take to nursing and the nurses kinda made me feel like it was my fault, though they had already broken her to a passifier and a bottle before they had her try with me again. But that was only after being on a feed tube for a day. They had her arms tied to her diaper with gauze so she couldn't pull out the tubes and ivs. At the time I was mainly confused, years later and three girls later I can't even watch video of her in the nursery because it makes me cry. She looked like she couldn't breathe with the tube down her nose, they said she refused to open her mouth for air, until she ran out of it. When it came time to go home the one nurse argued with the doctor that I was not ready to take care of her and didn't want her released to me. She was already four days old at the time, I had spent alot of my life with babies, sitting and than with my own neices and nephews. I was not new to baby's and when I had Hannah I was 25 years old! The doc did let me bring her home... and I cried the entire 45 minute ride home. I never recovered. For six months thing were just not good for us, colic, ear infections, allergies to formulas, weigh gain. The docs reinsured that she was fine. Than at 9 months the doc began to think something wasn't right. Her weight was still small her head size small so she sent us for test. It was then that I realized Hannah has a very high pain tolerance. She had blood drawn, and never even quit smiling at all the lab techs that were there figuring that she would give a fight. In radiology they were hoping when they fit her into the contraption they have for babies for xrays that she would cry so they could get a good pic of her lungs... she sat there and looked around curiously,not a sound. Again the techs were in awe. I was happy not to have to hear her cry, but now I wish she would have. So just as I was starting to think everything was ok with Hannah it all went down hill. By two I was concerned there were things that did not seem right but I couldn't quite explain it. Now I look back I realize alot about what was going on but I missed it at the time. I started trying to find help when she was 2 1/2 despite my mother in law and others telling me she was perfectly fine. In fact I heard that up til the past year or two. 7 years of she is JUST NORMAL, and to be looked at like I was picking at her and was losing my mind. Anyways... Hannah is going to be 9 here in April, this is the first year she has remembered her exact birthdate. She suffers from anxiety from what I have been told. Which explains why she picks her fingers and lips. She can use her fingernails and just start stripping flesh from her fingertips layer by layer til she finally reaches blood. Her lips are usually only when she gets really bad. I have been getting her help from the time she was 2 1/2 but no one could tell me what was wrong. Her scores were always normal... but when you looked at them, some were extremely high and others extremely low and averaged out to normal. She is a visual learner... she doesn't do phonics only memorizes, can't remember songs and rhymes. Her auditory memory is coming along but it is slow. She smiled for her first five years of life. Now we have mastered extreme mad, and extreme upset. Which goes hand in hand with stomping feet, throwing arms accross chest and yelling. But she is also extremely happy too! She is being tried on Strattera right now. I don't mind her being active, and would rather die than put her on a medication that takes her energy away, because she does try to be good. I think it has helped her concentration some but did nothing for the picking. Which means I think that she is still trouble by something. I am afraid she is beginning to see that she is different and maybe being treated differently. When she gets upset with me I usualy pay for it. I try to stay firm with her and the rules of the house... but when she is punished there is usually something that happens to something of mine. New wall border pealed from walls, steals my gum, writes on my paperwork, etc... Somethings are not too bad other things are devistating. I can't even remember half of the stuff. I get upset and than just move on trying not to dwell on the bad stuff, plus my memory is zip anymore. She is getting better at being aware of dangers but still has no fear of many things. She likes to pour stuff out, and mix stuff. Fingernail polish, A-1( she can access food items easier) we have locks on everything but she is old enough now to open most everything regardless. We had to call poison control for pepper in the eyes, it poofed when she dumped it. She put oil in the tea kettle, vegetable oil. One of those paybacks I was talking about, and I made carmel popcorn one day while I was casting one of my younger daughters foot one day and she added powder from the mix to the popcorn and I thought I would choke when I took a bite. Over the years I have tried to find out what was wrong with her by researching the internet, and she sounded like so many different things but not exactly like any of them that I could find no help. We live in the backwoods and the school was even more lost than I. It was finally decided this past month Hannah needed more help in school and I applied for a wrap arround. We finally got a diagnosis, and she is finally getting the help I have tried so hard for her to get. I am so excited over the dianosis, it is like being blind and finally being able to see the path out of the darkness. I know what to research, and I am finding out ways to help. And to find a group of people that actually understand my frustration is amazing to me. No more critisizism from people with normal kids that don't understand how confusing it is at times. My name is Angie, I am the mother of four wonderful girls, Hannah my aspergers, being the oldest at 9, Alison 6, 4 and Paige is 1. We have a dairy farm in Central Pennsylvania. I don't get time to type often but I am so happy to hear your stories and about your everyday life. And to just not feel alone. Hannah is my salvation in many ways!! I love her so much, even though most days I end it feeling like she probably doesn't feel like I do. She is my memory, she doesn't let me forget anything in fact if I need to remember something I tell her! If I lose something she knows where it is usually. If she has seen it she has memorized it. Photographic almost I would say. At 2 1/2 she could take a pack of 8 crayons and tell you which color ws missing out when you lost one. I rejoice over hearing the success some of your children have had with growing and having a life of their own too. You get told so many negative things sometimes, it is hard not to take it to heart. Well I am sorry for going to for so long. Keep up the email!! Dawn yours was the first email I read and I just cried on the spot.. I have had so many days like that. I have also started having panic attacks the past year now and the other night when I joined I was having one. I am hoping that being able to relate to other will help me. I feel like I should be doing more for Hannah but there is only so much one person can do and all. Most days I am fine and nothing bothers me and I deal well but it does catch up. I am glad you are all so open here. Take care everyone. ANGIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Welcome, Angie. You've come to the right place...you can vent here anytime, ask questions, make comments, tell funny stories. It feels good to be able to get it out....we've all experienced it! Your daughter sounds like she has a bit of ODD in her (oppositional defiance disorder). My daughter (15) has it as well. I've had to 'go in the backdoor' all of her life to convince her to do things. I have to act like it really doesn't matter to me whether she does it or not...and then I have a better chance of her doing it! Or she'll say "NO" immediately (very impulsive, even on meds), and then she'll go and do what she is asked to do. But she has to immediately respond negatively. Don't know whassup with THAT. It's just her. welcome. maralee -----Original Message-----From: Angie Parsons Sent: Wednesday, March 31, 2004 8:21 AMTo: autism-aspergers Subject: Hi!! I'm New! Hello All, I can't tell you just how excited I am to be in this group!! I joined the other night when I was feeling kinda low, and was wanting to chat with someone who might have an idea of how I was feeling at the time. Most people don't understand and are more than happy to give advice which would not work on my daughter with Aspergers. I spent all of yesterday just reading mail that has come in and I actually cried with Dawn's letter. I can't believe there is actually others out there that feel exactly like I do. My daughter Hannah will be 9 next month, she was my first child and from day one I felt like I was not fit to be a mother. Soon after birth she was removed from my room, her bloodwork was showing a possible bacterial infection, and they wanted to start an iv. That was 11 at night, they brought her back to my room around 5 in the morning to try to nurse, still no iv and she had needle marks on all her hands and feet plus ones from drawling blood from her heals. I was not able to go see her til 9 in the morning at the nursery, I had some problems myself after delivery. I walked into the nursery just in time to see them placing an iv in her head!! What a shock!! Hannah was 5lb 10 oz. and did not have very good veins I guess. To look at her though she looked to be all bones. She was parked by the window for sun, as she had some jaundice, and was given antibiodic to fight the possible infection that never was found. She didn't take to nursing and the nurses kinda made me feel like it was my fault, though they had already broken her to a passifier and a bottle before they had her try with me again. But that was only after being on a feed tube for a day. They had her arms tied to her diaper with gauze so she couldn't pull out the tubes and ivs. At the time I was mainly confused, years later and three girls later I can't even watch video of her in the nursery because it makes me cry. She looked like she couldn't breathe with the tube down her nose, they said she refused to open her mouth for air, until she ran out of it. When it came time to go home the one nurse argued with the doctor that I was not ready to take care of her and didn't want her released to me. She was already four days old at the time, I had spent alot of my life with babies, sitting and than with my own neices and nephews. I was not new to baby's and when I had Hannah I was 25 years old! The doc did let me bring her home... and I cried the entire 45 minute ride home. I never recovered. For six months thing were just not good for us, colic, ear infections, allergies to formulas, weigh gain. The docs reinsured that she was fine. Than at 9 months the doc began to think something wasn't right. Her weight was still small her head size small so she sent us for test. It was then that I realized Hannah has a very high pain tolerance. She had blood drawn, and never even quit smiling at all the lab techs that were there figuring that she would give a fight. In radiology they were hoping when they fit her into the contraption they have for babies for xrays that she would cry so they could get a good pic of her lungs... she sat there and looked around curiously,not a sound. Again the techs were in awe. I was happy not to have to hear her cry, but now I wish she would have. So just as I was starting to think everything was ok with Hannah it all went down hill. By two I was concerned there were things that did not seem right but I couldn't quite explain it. Now I look back I realize alot about what was going on but I missed it at the time. I started trying to find help when she was 2 1/2 despite my mother in law and others telling me she was perfectly fine. In fact I heard that up til the past year or two. 7 years of she is JUST NORMAL, and to be looked at like I was picking at her and was losing my mind. Anyways... Hannah is going to be 9 here in April, this is the first year she has remembered her exact birthdate. She suffers from anxiety from what I have been told. Which explains why she picks her fingers and lips. She can use her fingernails and just start stripping flesh from her fingertips layer by layer til she finally reaches blood. Her lips are usually only when she gets really bad. I have been getting her help from the time she was 2 1/2 but no one could tell me what was wrong. Her scores were always normal... but when you looked at them, some were extremely high and others extremely low and averaged out to normal. She is a visual learner... she doesn't do phonics only memorizes, can't remember songs and rhymes. Her auditory memory is coming along but it is slow. She smiled for her first five years of life. Now we have mastered extreme mad, and extreme upset. Which goes hand in hand with stomping feet, throwing arms accross chest and yelling. But she is also extremely happy too! She is being tried on Strattera right now. I don't mind her being active, and would rather die than put her on a medication that takes her energy away, because she does try to be good. I think it has helped her concentration some but did nothing for the picking. Which means I think that she is still trouble by something. I am afraid she is beginning to see that she is different and maybe being treated differently. When she gets upset with me I usualy pay for it. I try to stay firm with her and the rules of the house... but when she is punished there is usually something that happens to something of mine. New wall border pealed from walls, steals my gum, writes on my paperwork, etc... Somethings are not too bad other things are devistating. I can't even remember half of the stuff. I get upset and than just move on trying not to dwell on the bad stuff, plus my memory is zip anymore. She is getting better at being aware of dangers but still has no fear of many things. She likes to pour stuff out, and mix stuff. Fingernail polish, A-1( she can access food items easier) we have locks on everything but she is old enough now to open most everything regardless. We had to call poison control for pepper in the eyes, it poofed when she dumped it. She put oil in the tea kettle, vegetable oil. One of those paybacks I was talking about, and I made carmel popcorn one day while I was casting one of my younger daughters foot one day and she added powder from the mix to the popcorn and I thought I would choke when I took a bite. Over the years I have tried to find out what was wrong with her by researching the internet, and she sounded like so many different things but not exactly like any of them that I could find no help. We live in the backwoods and the school was even more lost than I. It was finally decided this past month Hannah needed more help in school and I applied for a wrap arround. We finally got a diagnosis, and she is finally getting the help I have tried so hard for her to get. I am so excited over the dianosis, it is like being blind and finally being able to see the path out of the darkness. I know what to research, and I am finding out ways to help. And to find a group of people that actually understand my frustration is amazing to me. No more critisizism from people with normal kids that don't understand how confusing it is at times. My name is Angie, I am the mother of four wonderful girls, Hannah my aspergers, being the oldest at 9, Alison 6, 4 and Paige is 1. We have a dairy farm in Central Pennsylvania. I don't get time to type often but I am so happy to hear your stories and about your everyday life. And to just not feel alone. Hannah is my salvation in many ways!! I love her so much, even though most days I end it feeling like she probably doesn't feel like I do. She is my memory, she doesn't let me forget anything in fact if I need to remember something I tell her! If I lose something she knows where it is usually. If she has seen it she has memorized it. Photographic almost I would say. At 2 1/2 she could take a pack of 8 crayons and tell you which color ws missing out when you lost one. I rejoice over hearing the success some of your children have had with growing and having a life of their own too. You get told so many negative things sometimes, it is hard not to take it to heart. Well I am sorry for going to for so long. Keep up the email!! Dawn yours was the first email I read and I just cried on the spot.. I have had so many days like that. I have also started having panic attacks the past year now and the other night when I joined I was having one. I am hoping that being able to relate to other will help me. I feel like I should be doing more for Hannah but there is only so much one person can do and all. Most days I am fine and nothing bothers me and I deal well but it does catch up. I am glad you are all so open here. Take care everyone. ANGIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Welcome, Angie. You've come to the right place...you can vent here anytime, ask questions, make comments, tell funny stories. It feels good to be able to get it out....we've all experienced it! Your daughter sounds like she has a bit of ODD in her (oppositional defiance disorder). My daughter (15) has it as well. I've had to 'go in the backdoor' all of her life to convince her to do things. I have to act like it really doesn't matter to me whether she does it or not...and then I have a better chance of her doing it! Or she'll say "NO" immediately (very impulsive, even on meds), and then she'll go and do what she is asked to do. But she has to immediately respond negatively. Don't know whassup with THAT. It's just her. welcome. maralee -----Original Message-----From: Angie Parsons Sent: Wednesday, March 31, 2004 8:21 AMTo: autism-aspergers Subject: Hi!! I'm New! Hello All, I can't tell you just how excited I am to be in this group!! I joined the other night when I was feeling kinda low, and was wanting to chat with someone who might have an idea of how I was feeling at the time. Most people don't understand and are more than happy to give advice which would not work on my daughter with Aspergers. I spent all of yesterday just reading mail that has come in and I actually cried with Dawn's letter. I can't believe there is actually others out there that feel exactly like I do. My daughter Hannah will be 9 next month, she was my first child and from day one I felt like I was not fit to be a mother. Soon after birth she was removed from my room, her bloodwork was showing a possible bacterial infection, and they wanted to start an iv. That was 11 at night, they brought her back to my room around 5 in the morning to try to nurse, still no iv and she had needle marks on all her hands and feet plus ones from drawling blood from her heals. I was not able to go see her til 9 in the morning at the nursery, I had some problems myself after delivery. I walked into the nursery just in time to see them placing an iv in her head!! What a shock!! Hannah was 5lb 10 oz. and did not have very good veins I guess. To look at her though she looked to be all bones. She was parked by the window for sun, as she had some jaundice, and was given antibiodic to fight the possible infection that never was found. She didn't take to nursing and the nurses kinda made me feel like it was my fault, though they had already broken her to a passifier and a bottle before they had her try with me again. But that was only after being on a feed tube for a day. They had her arms tied to her diaper with gauze so she couldn't pull out the tubes and ivs. At the time I was mainly confused, years later and three girls later I can't even watch video of her in the nursery because it makes me cry. She looked like she couldn't breathe with the tube down her nose, they said she refused to open her mouth for air, until she ran out of it. When it came time to go home the one nurse argued with the doctor that I was not ready to take care of her and didn't want her released to me. She was already four days old at the time, I had spent alot of my life with babies, sitting and than with my own neices and nephews. I was not new to baby's and when I had Hannah I was 25 years old! The doc did let me bring her home... and I cried the entire 45 minute ride home. I never recovered. For six months thing were just not good for us, colic, ear infections, allergies to formulas, weigh gain. The docs reinsured that she was fine. Than at 9 months the doc began to think something wasn't right. Her weight was still small her head size small so she sent us for test. It was then that I realized Hannah has a very high pain tolerance. She had blood drawn, and never even quit smiling at all the lab techs that were there figuring that she would give a fight. In radiology they were hoping when they fit her into the contraption they have for babies for xrays that she would cry so they could get a good pic of her lungs... she sat there and looked around curiously,not a sound. Again the techs were in awe. I was happy not to have to hear her cry, but now I wish she would have. So just as I was starting to think everything was ok with Hannah it all went down hill. By two I was concerned there were things that did not seem right but I couldn't quite explain it. Now I look back I realize alot about what was going on but I missed it at the time. I started trying to find help when she was 2 1/2 despite my mother in law and others telling me she was perfectly fine. In fact I heard that up til the past year or two. 7 years of she is JUST NORMAL, and to be looked at like I was picking at her and was losing my mind. Anyways... Hannah is going to be 9 here in April, this is the first year she has remembered her exact birthdate. She suffers from anxiety from what I have been told. Which explains why she picks her fingers and lips. She can use her fingernails and just start stripping flesh from her fingertips layer by layer til she finally reaches blood. Her lips are usually only when she gets really bad. I have been getting her help from the time she was 2 1/2 but no one could tell me what was wrong. Her scores were always normal... but when you looked at them, some were extremely high and others extremely low and averaged out to normal. She is a visual learner... she doesn't do phonics only memorizes, can't remember songs and rhymes. Her auditory memory is coming along but it is slow. She smiled for her first five years of life. Now we have mastered extreme mad, and extreme upset. Which goes hand in hand with stomping feet, throwing arms accross chest and yelling. But she is also extremely happy too! She is being tried on Strattera right now. I don't mind her being active, and would rather die than put her on a medication that takes her energy away, because she does try to be good. I think it has helped her concentration some but did nothing for the picking. Which means I think that she is still trouble by something. I am afraid she is beginning to see that she is different and maybe being treated differently. When she gets upset with me I usualy pay for it. I try to stay firm with her and the rules of the house... but when she is punished there is usually something that happens to something of mine. New wall border pealed from walls, steals my gum, writes on my paperwork, etc... Somethings are not too bad other things are devistating. I can't even remember half of the stuff. I get upset and than just move on trying not to dwell on the bad stuff, plus my memory is zip anymore. She is getting better at being aware of dangers but still has no fear of many things. She likes to pour stuff out, and mix stuff. Fingernail polish, A-1( she can access food items easier) we have locks on everything but she is old enough now to open most everything regardless. We had to call poison control for pepper in the eyes, it poofed when she dumped it. She put oil in the tea kettle, vegetable oil. One of those paybacks I was talking about, and I made carmel popcorn one day while I was casting one of my younger daughters foot one day and she added powder from the mix to the popcorn and I thought I would choke when I took a bite. Over the years I have tried to find out what was wrong with her by researching the internet, and she sounded like so many different things but not exactly like any of them that I could find no help. We live in the backwoods and the school was even more lost than I. It was finally decided this past month Hannah needed more help in school and I applied for a wrap arround. We finally got a diagnosis, and she is finally getting the help I have tried so hard for her to get. I am so excited over the dianosis, it is like being blind and finally being able to see the path out of the darkness. I know what to research, and I am finding out ways to help. And to find a group of people that actually understand my frustration is amazing to me. No more critisizism from people with normal kids that don't understand how confusing it is at times. My name is Angie, I am the mother of four wonderful girls, Hannah my aspergers, being the oldest at 9, Alison 6, 4 and Paige is 1. We have a dairy farm in Central Pennsylvania. I don't get time to type often but I am so happy to hear your stories and about your everyday life. And to just not feel alone. Hannah is my salvation in many ways!! I love her so much, even though most days I end it feeling like she probably doesn't feel like I do. She is my memory, she doesn't let me forget anything in fact if I need to remember something I tell her! If I lose something she knows where it is usually. If she has seen it she has memorized it. Photographic almost I would say. At 2 1/2 she could take a pack of 8 crayons and tell you which color ws missing out when you lost one. I rejoice over hearing the success some of your children have had with growing and having a life of their own too. You get told so many negative things sometimes, it is hard not to take it to heart. Well I am sorry for going to for so long. Keep up the email!! Dawn yours was the first email I read and I just cried on the spot.. I have had so many days like that. I have also started having panic attacks the past year now and the other night when I joined I was having one. I am hoping that being able to relate to other will help me. I feel like I should be doing more for Hannah but there is only so much one person can do and all. Most days I am fine and nothing bothers me and I deal well but it does catch up. I am glad you are all so open here. Take care everyone. ANGIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Welcome Angie! Reading about Spring in PA puts a smile on my face... I kind of miss PA (can you tell?) Definite difference between PA Spring and MN spring! I'm still shellshocked even after 3 years of this cold. I used to live about 7 miles East of Gettysburg.... small spec on the map too DES aka Joyce Quote Link to comment Share on other sites More sharing options...
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