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The Elephant in the Room
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<blockquote data-quote="gsingjane" data-source="post: 584124" data-attributes="member: 15986"><p>@ susiestar - I appreciate your good suggestion... will share one thing with you though... it would have been great to be able to share with other parents of kids with serious illnesses. In fact, for quite some time, I was on a yahoo group for parents of kids with my difficult child's exact problem, and we were also active in a foundation that holds a yearly conference, and seeks to raise money for research into his disease. For a while there I was in almost daily email contact with a woman whose adult son has the same medical problem.</p><p></p><p>It turned out to be an incredibly lonely experience, though, because NOT ONE of the other kids or families involved seemed to have anywhere near the kinds of behavioral or psychological problems as my difficult child. Our difficult child routinely lied, and still lies, about his symptoms, treatments, medications and prognosis. I often found that what I thought I was "sharing" with the other parents was false! How embarrassing was that! It felt to me like pretty much every other family had a lot of solidarity around their child's illness, whereas with us, most of the time we were (and certainly are) completely in the dark about what was happening or, as I say, lied to at every turn. As you probably know, with the HIPPA law, there was never any way we could find out the actual facts around my son, and to this day, we feel that he manipulates or overstates or understates things to us, depending on his other agenda.</p><p></p><p>Our difficult child is also extraordinarily resistant to our suggesting or even raising the possibility of any particular treatment, lifestyle, etc. From the beginning, it's been "his way or the highway;" he has a relationship with a care team that has taken a specific approach and he's not interested in anything we might have to say. it's irritating to him at best and enraging otherwise. He has wanted us disconnected from his treatment (and his life in general) and that, to me, just seems so different from the attitudes and circumstances of most families with a seriously ill child. This is why I eventually came to feel that I had, in fact, very little in common with other parents in our situation, and why interacting with them came to be a source of more pain, rather than support or nurture.</p><p></p><p>Having a difficult child is very isolating...</p></blockquote><p></p>
[QUOTE="gsingjane, post: 584124, member: 15986"] @ susiestar - I appreciate your good suggestion... will share one thing with you though... it would have been great to be able to share with other parents of kids with serious illnesses. In fact, for quite some time, I was on a yahoo group for parents of kids with my difficult child's exact problem, and we were also active in a foundation that holds a yearly conference, and seeks to raise money for research into his disease. For a while there I was in almost daily email contact with a woman whose adult son has the same medical problem. It turned out to be an incredibly lonely experience, though, because NOT ONE of the other kids or families involved seemed to have anywhere near the kinds of behavioral or psychological problems as my difficult child. Our difficult child routinely lied, and still lies, about his symptoms, treatments, medications and prognosis. I often found that what I thought I was "sharing" with the other parents was false! How embarrassing was that! It felt to me like pretty much every other family had a lot of solidarity around their child's illness, whereas with us, most of the time we were (and certainly are) completely in the dark about what was happening or, as I say, lied to at every turn. As you probably know, with the HIPPA law, there was never any way we could find out the actual facts around my son, and to this day, we feel that he manipulates or overstates or understates things to us, depending on his other agenda. Our difficult child is also extraordinarily resistant to our suggesting or even raising the possibility of any particular treatment, lifestyle, etc. From the beginning, it's been "his way or the highway;" he has a relationship with a care team that has taken a specific approach and he's not interested in anything we might have to say. it's irritating to him at best and enraging otherwise. He has wanted us disconnected from his treatment (and his life in general) and that, to me, just seems so different from the attitudes and circumstances of most families with a seriously ill child. This is why I eventually came to feel that I had, in fact, very little in common with other parents in our situation, and why interacting with them came to be a source of more pain, rather than support or nurture. Having a difficult child is very isolating... [/QUOTE]
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