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ssfkat

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  1. Like
    ssfkat got a reaction from demeter in Should I stay or should I go?   
    (apologies to the Clash )
     
    Ok, I wanted to get the opinion of those here since most parents don't understand this dilemma.
     
    In a nutshell, we have the opportunity to go to the beach for a night with a group of friends, one of whom has a house at the beach.
     
    DH cannot go because he will be out of town. I rely on him heavily to manage flares with DD.
     
    She has been really really bad for a while now and we can't trace it. She is on abx and we sometimes give her ibuprofen which helps, but not always,.
     
    We have to plan it 2 weeks in advance, and we both know that at any time, she could snap back and be her normal, happy self. She always wants to be around people, oddly even when she is flaring, but often I keep her away because I get tired of damage control.
     
    Plus we of course both really want her to be able to be with friends and have fun experiences.
     
    Right now the thought of being in a house with her the way she is makes me physically nauseous. However, often even when she is flaring, she will totally surprise us and do fine with a change of circumstances, and distractions.
     
    DH is leaving it up to me since I will be on my own in managing her.
     
    Should I do the "safe" thing and just not plan it? Should I roll the dice and go hope for the best? What if she is horrific and everyone comes back hating her (not really, but you know...)..... If I don't plan it, and she is fine by then, I will regret it.
     
    What to do!!??
  2. Like
    ssfkat got a reaction from BeeRae22 in Spoiled rotten   
    dasu, best response I've read.
     
    Setting limits and accountability do not work during a flare/reaction. DD already knows her limits and accountability. How do I know? Because when she is not flaring, she behaves with a recognition of her limits and accountability ... and is actually quite well-behaved. At those times, I feel like a great parent. But when the switch flips, all of that changes. She becomes almost animalistic and, although I know what is happening, I still cannot help feeling like the lousiest parent.
     
    Still, the rest of the world does not deserve to be subject to her selfish whims and demands. So, something has to be done. The result often ends up being social and emotional isolation, not just for her but for the rest of the family. And then any explanation that her behavior causes certain consequences is met with "what did I do???" "I don't understand what I did????" etc. etc. -- within minutes of being completely obnoxious, selfish and unbearable. How can she not know what she is doing? Yet at that moment, I see her tears, and I dare to consider that she really really does not comprehend how bad she is being. Then I feel sorry for her, but at the same time, you cannot just let this stuff slide all the time.
     
    There is also the consideration of her own social relationships. When she was younger, you could see that people just excused her behavior as typical childhood tantrums. But as she gets older, people tend to expect more. They expect age-appropriate behavior. And when they see very age-INappropriate behavior, their first thought is never ever, "Oh, she must be suffering from brain encephalitis." It's usually something along the lines of her being selfish, a brat, spoiled, lacking discipline, and above all, the result of bad parenting (of course). "If MY kid did that, I tell you what I would do...." is one of my favorites.
     
    We don't feel the necessity to try to explain what we are dealing with to other people who really have no business knowing, however at the same time, them NOT knowing means that we as a family are often judged unfairly. If she had some physical ramifications of her issues, it would be easier for people to have compassion. But because what she deals with is "invisible", it creates a false sense of reality. And sadly, human tendency is not to extend extra kindness. (Heck, why should they? When I often have a hard time with it myself, and she's my kid.)
     
    When she is not flaring, she is the best kid in the world. She is sensitive to others' feelings, she is compassionate and thoughtful and always, always sticks up for the bullied kids at school. I am so proud of those moments. I try to remember that --- and we really really try to remind ourselves that that is the real kid, not the one that we see during the bad times. It's hard, but we know that she is in there somewhere, and probably trying really hard to come out.
     
    One night, while she was "normal", we talked for a long time about her issues. I asked her why she acts like she does sometimes, and she just says, "I don't know." She says she knows it is wrong, but at the time, she wants to do it. One night she said, "Don't give up on me." It was a heavy statement from an 8yo, and I will never forget it.
     
    I try to put a twist on things, and tell her that what she is going through will help her so much when she is a grown-up. She will have so much compassion and understanding for people going through hard times. And when she sees a kid acting like she does sometimes, she will be able to really reach out to them and give them the compassion they need.
     
    Despite everything, dealing with what we deal with has added another dimension to my personality. Before having children, I really thought I would be the best parent . I had it all figured out. But parenting teaches humility, and especially so for children like these.
     
    I read somewhere that the child who seems not to deserve love, is the one who needs it the most. Although it is hard to put into practice sometimes, I believe that is true.
  3. Like
    ssfkat got a reaction from SSS in Spoiled rotten   
    dasu, best response I've read.
     
    Setting limits and accountability do not work during a flare/reaction. DD already knows her limits and accountability. How do I know? Because when she is not flaring, she behaves with a recognition of her limits and accountability ... and is actually quite well-behaved. At those times, I feel like a great parent. But when the switch flips, all of that changes. She becomes almost animalistic and, although I know what is happening, I still cannot help feeling like the lousiest parent.
     
    Still, the rest of the world does not deserve to be subject to her selfish whims and demands. So, something has to be done. The result often ends up being social and emotional isolation, not just for her but for the rest of the family. And then any explanation that her behavior causes certain consequences is met with "what did I do???" "I don't understand what I did????" etc. etc. -- within minutes of being completely obnoxious, selfish and unbearable. How can she not know what she is doing? Yet at that moment, I see her tears, and I dare to consider that she really really does not comprehend how bad she is being. Then I feel sorry for her, but at the same time, you cannot just let this stuff slide all the time.
     
    There is also the consideration of her own social relationships. When she was younger, you could see that people just excused her behavior as typical childhood tantrums. But as she gets older, people tend to expect more. They expect age-appropriate behavior. And when they see very age-INappropriate behavior, their first thought is never ever, "Oh, she must be suffering from brain encephalitis." It's usually something along the lines of her being selfish, a brat, spoiled, lacking discipline, and above all, the result of bad parenting (of course). "If MY kid did that, I tell you what I would do...." is one of my favorites.
     
    We don't feel the necessity to try to explain what we are dealing with to other people who really have no business knowing, however at the same time, them NOT knowing means that we as a family are often judged unfairly. If she had some physical ramifications of her issues, it would be easier for people to have compassion. But because what she deals with is "invisible", it creates a false sense of reality. And sadly, human tendency is not to extend extra kindness. (Heck, why should they? When I often have a hard time with it myself, and she's my kid.)
     
    When she is not flaring, she is the best kid in the world. She is sensitive to others' feelings, she is compassionate and thoughtful and always, always sticks up for the bullied kids at school. I am so proud of those moments. I try to remember that --- and we really really try to remind ourselves that that is the real kid, not the one that we see during the bad times. It's hard, but we know that she is in there somewhere, and probably trying really hard to come out.
     
    One night, while she was "normal", we talked for a long time about her issues. I asked her why she acts like she does sometimes, and she just says, "I don't know." She says she knows it is wrong, but at the time, she wants to do it. One night she said, "Don't give up on me." It was a heavy statement from an 8yo, and I will never forget it.
     
    I try to put a twist on things, and tell her that what she is going through will help her so much when she is a grown-up. She will have so much compassion and understanding for people going through hard times. And when she sees a kid acting like she does sometimes, she will be able to really reach out to them and give them the compassion they need.
     
    Despite everything, dealing with what we deal with has added another dimension to my personality. Before having children, I really thought I would be the best parent . I had it all figured out. But parenting teaches humility, and especially so for children like these.
     
    I read somewhere that the child who seems not to deserve love, is the one who needs it the most. Although it is hard to put into practice sometimes, I believe that is true.
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