lumpkin
Ideal_Rock
- Joined
- May 24, 2005
- Messages
- 2,491
I''m continuing the conversation from the Valentine''s Day thread because we totally hijacked the thread. Time for a new one.
DIAMONDFAN wrote this from the What Do You Want for Valentine''s Day thread.
"I think a lot of times there is the view if you are a stay at home mom that you are not tuned in or knowledgeable. But like in any field, there are good and bad practitioners, and you have to pay close attention so you CAN question things and really make noise if you think something is up. Our first psychiatrist was really awful, just did not listen to me or hear me at all, I finally made my husband intervene and get really tough on her because she ignored me. I would want to spit on the doctor that said that! What a jerkoff...My favorite pediatrician, when I lived in L.A. said, Yes, I went to medical school but you are the mom and you know you child. If you have concerns or think something is not okay, call. I will let you know ultimately if you have to be concerned, but do not assume you do not know something...that advice really helped me. Yes, Angelsman is terrible, it is profound and severe, she will need care all of her life in an institution, my friend could no longer have her in the house with home care, it was so hard on her other kids and the girl got too big and strong to be assisted safely. But I just could not believe the way the doctor''s totally ignored her concerns. In the end, it did not change her outcome, and there was nothing that really could be done, meaning she will always have this and unlike tourettes or add or pdd nos, there are not steps one can take or things one can do to help the child. They can only keep her safe and cared for, she will never be functional or on her own. I saw a show about Tourette''s and some of the children were tic''ing so severly...my son does it less so, and you really have to look for it, I know it because I know him so well. My friend is a psychiatrist, had been for 25 years, and sees my son all the time since he and her son are best friends. The first time I told her, because he was sleeping over and needed to take his meds, she was pretty surprised, now she said she does see it a bit, she knows what to look for now, but it never really jumped out at her before. A lot pf times, kids with tourettes really work hard to control things in school, and then come home and fall apart because they are exhausted with the efforts of holding it together all day. The hardest thing for me is to know HE thinks he is a freak and a weirdo and that people are all teasing him and making fun of him...but in truth, he is popular and I tried to tell him that one never knows what goes on within each person. I know many kids in his grade and school have issues, be they mild to severe, and it is easy as a kid to think you are the only one who is different (in a bad way, not a good way) and that you stand out because of traits or issues that you have, when in truth a lot of kids have problems and troubles, and as they grow up, they hopefully learn to be less judgemental and more tolerant. But, adolescence is tough to navigate, and even though I try to tell him all the positives, when he looks in the mirror now that stuff is not what he sees first..."
I''m not looking forward to puberty at all, Diamondfan. ITA about holding it all together during the school day and falling apart at home. That''s part of the problem, as well as a blessing. Other people have no idea what we parents have to work with at home and all the preparation we do so that the day will go smoothly, nor what our kids go through. I hope your son''s therapy is helping him -- adolescense is difficult for everyone, but much harder for a kid who has any kind of difference. What a blessing that his meds take care of most of his tics. I hope he can eventually come to understand that he''s a really loved, valued person and he does not have to be difined by the Tourette''s, but that it''s just one part of him.
One of the other moms has a child with leukemia. It went into remission and later came back, went into remission again. I asked her how she managed with 4 other kids. She said she doesn''t think about it -- it''s just part of life at their house. She does what she needs to be done. Wow, whenever I start to feel badly about our situation, I think of her and remember, it could be SO MUCH worse. Another friend has a boy with diabetes. It''s serious because he developed it at 4. It''s really true that we get in a vacuum and think we''re the only ones dealing with issues, but no one gets out of parenthood or childhood scott free.
DIAMONDFAN wrote this from the What Do You Want for Valentine''s Day thread.
"I think a lot of times there is the view if you are a stay at home mom that you are not tuned in or knowledgeable. But like in any field, there are good and bad practitioners, and you have to pay close attention so you CAN question things and really make noise if you think something is up. Our first psychiatrist was really awful, just did not listen to me or hear me at all, I finally made my husband intervene and get really tough on her because she ignored me. I would want to spit on the doctor that said that! What a jerkoff...My favorite pediatrician, when I lived in L.A. said, Yes, I went to medical school but you are the mom and you know you child. If you have concerns or think something is not okay, call. I will let you know ultimately if you have to be concerned, but do not assume you do not know something...that advice really helped me. Yes, Angelsman is terrible, it is profound and severe, she will need care all of her life in an institution, my friend could no longer have her in the house with home care, it was so hard on her other kids and the girl got too big and strong to be assisted safely. But I just could not believe the way the doctor''s totally ignored her concerns. In the end, it did not change her outcome, and there was nothing that really could be done, meaning she will always have this and unlike tourettes or add or pdd nos, there are not steps one can take or things one can do to help the child. They can only keep her safe and cared for, she will never be functional or on her own. I saw a show about Tourette''s and some of the children were tic''ing so severly...my son does it less so, and you really have to look for it, I know it because I know him so well. My friend is a psychiatrist, had been for 25 years, and sees my son all the time since he and her son are best friends. The first time I told her, because he was sleeping over and needed to take his meds, she was pretty surprised, now she said she does see it a bit, she knows what to look for now, but it never really jumped out at her before. A lot pf times, kids with tourettes really work hard to control things in school, and then come home and fall apart because they are exhausted with the efforts of holding it together all day. The hardest thing for me is to know HE thinks he is a freak and a weirdo and that people are all teasing him and making fun of him...but in truth, he is popular and I tried to tell him that one never knows what goes on within each person. I know many kids in his grade and school have issues, be they mild to severe, and it is easy as a kid to think you are the only one who is different (in a bad way, not a good way) and that you stand out because of traits or issues that you have, when in truth a lot of kids have problems and troubles, and as they grow up, they hopefully learn to be less judgemental and more tolerant. But, adolescence is tough to navigate, and even though I try to tell him all the positives, when he looks in the mirror now that stuff is not what he sees first..."
I''m not looking forward to puberty at all, Diamondfan. ITA about holding it all together during the school day and falling apart at home. That''s part of the problem, as well as a blessing. Other people have no idea what we parents have to work with at home and all the preparation we do so that the day will go smoothly, nor what our kids go through. I hope your son''s therapy is helping him -- adolescense is difficult for everyone, but much harder for a kid who has any kind of difference. What a blessing that his meds take care of most of his tics. I hope he can eventually come to understand that he''s a really loved, valued person and he does not have to be difined by the Tourette''s, but that it''s just one part of him.
One of the other moms has a child with leukemia. It went into remission and later came back, went into remission again. I asked her how she managed with 4 other kids. She said she doesn''t think about it -- it''s just part of life at their house. She does what she needs to be done. Wow, whenever I start to feel badly about our situation, I think of her and remember, it could be SO MUCH worse. Another friend has a boy with diabetes. It''s serious because he developed it at 4. It''s really true that we get in a vacuum and think we''re the only ones dealing with issues, but no one gets out of parenthood or childhood scott free.
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