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<blockquote data-quote="Marguerite" data-source="post: 377285" data-attributes="member: 1991"><p>Geekparent, I've had to skim responses. Sorry. But I'm a fairly accurate skimmer. I hope I've got everything right.</p><p></p><p>First - I understand the dread of the phone calls and emails. They shouldn't be happening. When they ARE happening, it means that services your child needs are not in place. it is not your fault, not your child's fault, not even necessarily the school's fault. Sometimes things just haven't been connected yet. So it's not about blame, it's more about how do we work out what she needs, and get it put in place?</p><p></p><p>As difficult child 3 had increasing problems in mainstream, it got so I couldn't organise my life at all; if I had a doctor's appointment I often had to cancel or turn back while halfway there, because the school had rung andasked me to come collect difficult child 3 who was vomiting again (it turned out to be due to extreme anxiety - this is what it can develop into, especially as teen years approach). The class teacher was insistent that </p><p>1) there was something seriously physically wrong with difficult child 3 and we were wasting time trying to say it was anxiety; and then</p><p></p><p>2) He was deliberately making himself sick to get out of school.</p><p></p><p>Both these statements were mutually exclusive. Idiotic. But in tis case, the class teacher was the last straw in the anxiety cascade.</p><p></p><p>I talk about an anxiety cascade as others (and you) have described how anxiety can be complex and due to a series of events which the individual takes personally to heart.</p><p></p><p>Susie recommended books. The doctor recommended cutting out white flour, but from other things he's said I think he's grasping at straws. Either cut out gluten and get serious with other possible food sensitivities, or stop fiddling with this and that and get the kid real help. I make that statement to the doctor, not you.</p><p></p><p>I'm appalled that the doctor thinks these issues can just be worked through - not at all. She needs a diagnosis. Now, I normally get very annoyed at people who put a premium on labels. On another thread I've been emphasising that in that case, the symptoms are what should be focussed on, not the possible label, because in that case the considered label could be a distraction and lead therapists astray. But in your daughter's case, she needs to be appropriately referred to first the pediatrician, then the psychiatrist, then the neuropsychologist. MUST BE DONE! The doctor is wrong to not allow it; he doesn't want to share, doesn't seem to play nicely with others.</p><p></p><p>So the line I've used on doctors in tis situation - "I know you feel we can just work this through, but I'm already badly out of pocket because I took her to a psychiatrist that you could have written a referral for, but chose not to. I think the psychiatrist is helping. You might disagree. But surely the only way we can find out, is for you to refer her. If the pediatrician comes back and says, "This can be worked out through behaviour management, I will bow to your superior knowledge, you will know you have been proven right. I will then stop nagging you for referrals. Deal?"</p><p></p><p>I'm with MidWestMom. THis to me sounds like something on the autism spectrum. You say she's not got the single focus obsession, but these obsessions can and do change. A lot. What you describe is normal for autism/Asperger's. And if that IS what it is, then the poor kid is suffering badly. She desperately would need an IEP, possibly ADHD medications (they can still work in some case - in my kids for example - even if it's primarily autism) and certainly NOT behaviour modification.</p><p></p><p>We went through the behaviour modification with difficult child 3 at school. The behaviour teacher was lovely, a regular visitor who put in a lot of work with difficult child 3. But the problem was - he learned all the things he should do, the ways he should behave. But when anxious or upset, he was incapable of putting these into practice. And the little ****es in his class (not all the kids, only a few) knew how to push his buttons to cause a flip-out and get him into trouble. It caused entertainment and the teacher's distraction, which for these kids was the big payoff. One little darling used to stick pins in difficult child 3 and then pretend total innocence. A scripture teacher (visiting pastoral untrained 'teacher' weekly) observed this while she had the class and reported it to me; said she had reported it to the class teacher who said she didn't see anything. difficult child 3 had independently been reporting the same thing for several YEARS and nothing had been done, except to punish difficult child 3 if he hit this kid. I later found that this kid's mother had been encouraged by the class teacher to press charges against difficult child 3 for hitting her son. Thankfully the mother chose not to. I found this out when things had escalated to such a point with this kid that I went round to their place to have it out. We ended up resolving problems and while those boys are not best friends, they now respect each other and look out for each other. One meeting. I sorted it. After years of teachers doing nothing despite being told about it and despite all their records showing problems.</p><p></p><p>The trouble is, despite having a diagnosis, difficult child 3 got labelled as the weird kid, the one who was out of control, dangerous and shouldn't be there but should be in an institution. Some teachers cared, I think because difficult child 3 loved learning and was intelligent (teachers respect that) but his behaviour was, to them, unpredictable. To me, his behaviour is very predictable, I know exactly what triggers him and how far to push him and then draw back before he explodes.</p><p></p><p>A diagnosis helps. You need one to get an IEP. That's another point for the doctor - she needs help at school, she needs extra support that they can't give her, without a diagnosis. IT DOESN'T MATTER IF THE diagnosis IS WRONG. Tell the doctor tis. A diagnosis can be changed later, but the IEP, once in place, provides more support than she is getting now.</p><p></p><p>And tis then has a bearing on your health (mental and physical). If your daughter's needs are =better met at school, you won't be getting so many challenging messages, calls and emails and will be better able to cope.</p><p></p><p>It is in your doctor's hands. Plead with him if you must. Tell him you will kiss his feet if he is proven right. Or whatever it takes. Tell him you will sew a sampler to put on his wall that says, "I am a diagnostic guru" if it turns out the referrals were not needed. But if they are - the sooner the better. Hey, doctor, let's just play it safe, OK?</p><p></p><p>Girls also express Pervasive Developmental Disorder (PDD) differently, which is another reason why you need to be careful to not dismiss the Pervasive Developmental Disorder (PDD) option too soon. We've found tis out the hard way - easy child 2/difficult child 2 doesn't have an official Pervasive Developmental Disorder (PDD) diagnosis, but it's looking more and more like it will just be a matter of time. Her current therapist agrees it is most likely Asperger's, atypical because she's female.</p><p>When easy child 2/difficult child 2 was very young, she seemed socially capable at a very high level. She would read newspapers, watch the news on TV, looked after me (picked up my crutches when I dropped them), helped draft a letter of complaint to the local TV network when her favourite TV show got axed - all before she was 4 years old. She was very determined, too. Of course, now we look back we can see that a great deal of this was her need to be in control, and to have what SHE wanted put in place. But academically she was a prodigy. On the basis of an amazing IQ test she was permitted to start school early.</p><p>Then at about age 8 she hit the brick wall. Socially too. Her obsessions became more apparent and she seemed to regress emotionally. </p><p>Now at 24, she's a lovely girl but at times when her anxiety gets out of control, it is crippling. If she had been diagnosed when younger, she would have learned better strategies because it would have been recognised. Instead it went underground with her, she hid her anxiety and it broke out in cutting. It saddened me to see her, beautiful in her strapless ivory gown on her wedding day, with scarred arms. Although I don't think anybody noticed the scars...</p><p></p><p>But despite what we knew with the boys, we missed it with our girl. easy child also has some anxiety issues which could be connected with the genetic tendency of family members to show some Pervasive Developmental Disorder (PDD) traits too, when other family members are on the spectrum.</p><p></p><p>We had to fight a GP to get the pediatrician referral for difficult child 3. Later, after the pediaitrician had diagnosed autism, I happened to take difficult child 3 back to that doctor to get a high fever checked out. I said to the doctor, "Please look in his ears and throat, to make sure he doesn't have tonsillitis or middle ear infection."</p><p>The GP said, "He's two years old now, heading for three. He can ell you if his throat hurts or his ears are sore."</p><p>I replied, "He doesn't, actually. We've noticed he doesn't respond to pain as you would expect. We've been told that he is one of those kids with autism who don't respond to pain in the usual way."</p><p>The doctor yelled at me. "Your child is not autistic! Stop trying to find things wrong with your child!"</p><p>I replied (by this time pushed out into the waiting room with a lot of startled people looking on," You wrote the referral. I didn't diagnose him, the pediatrician did. Argue with him."</p><p>As it turned out, difficult child 3 did have tonsillitis that day. We ended up having to take him to the hospital that night, he was admitted with croup as well.</p><p></p><p>At other times I've had doctors say, "I'll write the referral for you, but you will be back here apologising to me, admitting it was a waste of time." ANd I wasn't. And those doctors have accepted that they made a mistake but did a good ting to write the referral anyway. In general I do stay friends with doctors, I make sure I feed back all info and keep the GP in the loop of it all. But in return, I require the GP to give me some rope too. It has paid off, as a rule. </p><p></p><p>And if you really feel you have to, find a new GP. As I had to, with the one who shouted at me in front of the waiting room full of patients. He had begun badmouthing me to another patient who was a notorious gossip, and that is unethical, so we moved on. But I only change doctors when I have absolutely no other choice. I will work with a doctor to the last rather than move on. Better to convert a doctor to my way of thinking, than to move on and leave the guy still thinking like an idiot.</p><p></p><p>I hope you can get some help for yourself and your daughter, and get the GP to write those referrals.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 377285, member: 1991"] Geekparent, I've had to skim responses. Sorry. But I'm a fairly accurate skimmer. I hope I've got everything right. First - I understand the dread of the phone calls and emails. They shouldn't be happening. When they ARE happening, it means that services your child needs are not in place. it is not your fault, not your child's fault, not even necessarily the school's fault. Sometimes things just haven't been connected yet. So it's not about blame, it's more about how do we work out what she needs, and get it put in place? As difficult child 3 had increasing problems in mainstream, it got so I couldn't organise my life at all; if I had a doctor's appointment I often had to cancel or turn back while halfway there, because the school had rung andasked me to come collect difficult child 3 who was vomiting again (it turned out to be due to extreme anxiety - this is what it can develop into, especially as teen years approach). The class teacher was insistent that 1) there was something seriously physically wrong with difficult child 3 and we were wasting time trying to say it was anxiety; and then 2) He was deliberately making himself sick to get out of school. Both these statements were mutually exclusive. Idiotic. But in tis case, the class teacher was the last straw in the anxiety cascade. I talk about an anxiety cascade as others (and you) have described how anxiety can be complex and due to a series of events which the individual takes personally to heart. Susie recommended books. The doctor recommended cutting out white flour, but from other things he's said I think he's grasping at straws. Either cut out gluten and get serious with other possible food sensitivities, or stop fiddling with this and that and get the kid real help. I make that statement to the doctor, not you. I'm appalled that the doctor thinks these issues can just be worked through - not at all. She needs a diagnosis. Now, I normally get very annoyed at people who put a premium on labels. On another thread I've been emphasising that in that case, the symptoms are what should be focussed on, not the possible label, because in that case the considered label could be a distraction and lead therapists astray. But in your daughter's case, she needs to be appropriately referred to first the pediatrician, then the psychiatrist, then the neuropsychologist. MUST BE DONE! The doctor is wrong to not allow it; he doesn't want to share, doesn't seem to play nicely with others. So the line I've used on doctors in tis situation - "I know you feel we can just work this through, but I'm already badly out of pocket because I took her to a psychiatrist that you could have written a referral for, but chose not to. I think the psychiatrist is helping. You might disagree. But surely the only way we can find out, is for you to refer her. If the pediatrician comes back and says, "This can be worked out through behaviour management, I will bow to your superior knowledge, you will know you have been proven right. I will then stop nagging you for referrals. Deal?" I'm with MidWestMom. THis to me sounds like something on the autism spectrum. You say she's not got the single focus obsession, but these obsessions can and do change. A lot. What you describe is normal for autism/Asperger's. And if that IS what it is, then the poor kid is suffering badly. She desperately would need an IEP, possibly ADHD medications (they can still work in some case - in my kids for example - even if it's primarily autism) and certainly NOT behaviour modification. We went through the behaviour modification with difficult child 3 at school. The behaviour teacher was lovely, a regular visitor who put in a lot of work with difficult child 3. But the problem was - he learned all the things he should do, the ways he should behave. But when anxious or upset, he was incapable of putting these into practice. And the little ****es in his class (not all the kids, only a few) knew how to push his buttons to cause a flip-out and get him into trouble. It caused entertainment and the teacher's distraction, which for these kids was the big payoff. One little darling used to stick pins in difficult child 3 and then pretend total innocence. A scripture teacher (visiting pastoral untrained 'teacher' weekly) observed this while she had the class and reported it to me; said she had reported it to the class teacher who said she didn't see anything. difficult child 3 had independently been reporting the same thing for several YEARS and nothing had been done, except to punish difficult child 3 if he hit this kid. I later found that this kid's mother had been encouraged by the class teacher to press charges against difficult child 3 for hitting her son. Thankfully the mother chose not to. I found this out when things had escalated to such a point with this kid that I went round to their place to have it out. We ended up resolving problems and while those boys are not best friends, they now respect each other and look out for each other. One meeting. I sorted it. After years of teachers doing nothing despite being told about it and despite all their records showing problems. The trouble is, despite having a diagnosis, difficult child 3 got labelled as the weird kid, the one who was out of control, dangerous and shouldn't be there but should be in an institution. Some teachers cared, I think because difficult child 3 loved learning and was intelligent (teachers respect that) but his behaviour was, to them, unpredictable. To me, his behaviour is very predictable, I know exactly what triggers him and how far to push him and then draw back before he explodes. A diagnosis helps. You need one to get an IEP. That's another point for the doctor - she needs help at school, she needs extra support that they can't give her, without a diagnosis. IT DOESN'T MATTER IF THE diagnosis IS WRONG. Tell the doctor tis. A diagnosis can be changed later, but the IEP, once in place, provides more support than she is getting now. And tis then has a bearing on your health (mental and physical). If your daughter's needs are =better met at school, you won't be getting so many challenging messages, calls and emails and will be better able to cope. It is in your doctor's hands. Plead with him if you must. Tell him you will kiss his feet if he is proven right. Or whatever it takes. Tell him you will sew a sampler to put on his wall that says, "I am a diagnostic guru" if it turns out the referrals were not needed. But if they are - the sooner the better. Hey, doctor, let's just play it safe, OK? Girls also express Pervasive Developmental Disorder (PDD) differently, which is another reason why you need to be careful to not dismiss the Pervasive Developmental Disorder (PDD) option too soon. We've found tis out the hard way - easy child 2/difficult child 2 doesn't have an official Pervasive Developmental Disorder (PDD) diagnosis, but it's looking more and more like it will just be a matter of time. Her current therapist agrees it is most likely Asperger's, atypical because she's female. When easy child 2/difficult child 2 was very young, she seemed socially capable at a very high level. She would read newspapers, watch the news on TV, looked after me (picked up my crutches when I dropped them), helped draft a letter of complaint to the local TV network when her favourite TV show got axed - all before she was 4 years old. She was very determined, too. Of course, now we look back we can see that a great deal of this was her need to be in control, and to have what SHE wanted put in place. But academically she was a prodigy. On the basis of an amazing IQ test she was permitted to start school early. Then at about age 8 she hit the brick wall. Socially too. Her obsessions became more apparent and she seemed to regress emotionally. Now at 24, she's a lovely girl but at times when her anxiety gets out of control, it is crippling. If she had been diagnosed when younger, she would have learned better strategies because it would have been recognised. Instead it went underground with her, she hid her anxiety and it broke out in cutting. It saddened me to see her, beautiful in her strapless ivory gown on her wedding day, with scarred arms. Although I don't think anybody noticed the scars... But despite what we knew with the boys, we missed it with our girl. easy child also has some anxiety issues which could be connected with the genetic tendency of family members to show some Pervasive Developmental Disorder (PDD) traits too, when other family members are on the spectrum. We had to fight a GP to get the pediatrician referral for difficult child 3. Later, after the pediaitrician had diagnosed autism, I happened to take difficult child 3 back to that doctor to get a high fever checked out. I said to the doctor, "Please look in his ears and throat, to make sure he doesn't have tonsillitis or middle ear infection." The GP said, "He's two years old now, heading for three. He can ell you if his throat hurts or his ears are sore." I replied, "He doesn't, actually. We've noticed he doesn't respond to pain as you would expect. We've been told that he is one of those kids with autism who don't respond to pain in the usual way." The doctor yelled at me. "Your child is not autistic! Stop trying to find things wrong with your child!" I replied (by this time pushed out into the waiting room with a lot of startled people looking on," You wrote the referral. I didn't diagnose him, the pediatrician did. Argue with him." As it turned out, difficult child 3 did have tonsillitis that day. We ended up having to take him to the hospital that night, he was admitted with croup as well. At other times I've had doctors say, "I'll write the referral for you, but you will be back here apologising to me, admitting it was a waste of time." ANd I wasn't. And those doctors have accepted that they made a mistake but did a good ting to write the referral anyway. In general I do stay friends with doctors, I make sure I feed back all info and keep the GP in the loop of it all. But in return, I require the GP to give me some rope too. It has paid off, as a rule. And if you really feel you have to, find a new GP. As I had to, with the one who shouted at me in front of the waiting room full of patients. He had begun badmouthing me to another patient who was a notorious gossip, and that is unethical, so we moved on. But I only change doctors when I have absolutely no other choice. I will work with a doctor to the last rather than move on. Better to convert a doctor to my way of thinking, than to move on and leave the guy still thinking like an idiot. I hope you can get some help for yourself and your daughter, and get the GP to write those referrals. Marg [/QUOTE]
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