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Poor, pitiful me syndrome with-public opinions
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<blockquote data-quote="Marguerite" data-source="post: 71486" data-attributes="member: 1991"><p>Stressed, you did all the right things. have faith in yourself. You've been badly burned by previous experiences, especially the previous school, and you need to let THIS school know that so they don't think you're incompetent, just insecure.</p><p></p><p>because you are NOT incompetent. Just the opposite.</p><p></p><p>I'm going from memory here, having scanned the posts:</p><p></p><p>Your calling difficult child on his tantrum in the nurse's office was definitely win-win. Even if she wasn't looking, the nurse heard it. She also sounds very sharp (or it was just lucky) - she had turned her chair back to her desk so her back was partly to difficult child. This is a signal that she is letting, you, the mother, handle the situation (ie she could already see you knew what you were about). It was also a rejection of difficult child's attention-seeking behaviour, so it was her way of letting you (and difficult child) know that she has his number.</p><p></p><p>I think this is darn good.</p><p></p><p>Your email - too long. WW is right, you're sounding too desperate to justify yourself. You need a communication book instead of emails. It's more informal so it means you can say more without it seeming so significant; yet the viral information is there. You CAN say what you need to and still not sound terse - throw in a funny comment, an aside, to show you're still smiling, even if it's through gritted teeth at your frustrating son.</p><p></p><p>I'm giving you a real example, names edited out and small explanations put in square brackets. This is from a few years ago, when difficult child 3 was in mainstream. He was 9 years old. This is an entire day's entry. I did not do entries on every day, only if there was new information or the need to keep the teacher fully informed as to his mood or level of fitness. Any crisis (behavioural) I notified them so they would know if he was more likely to be upset. At the time we were writing these entries difficult child 3 was suffering from such severe anxiety that he was vomiting and having low-grade fevers; his teacher insisted there was a physical problem needing investigation. As we had previously expected, she turned out to be a major factor in his anxiety because she's so strict, will not listen to parents and insists on doing things her way, even against professional advice. I still managed to stay polite and civil to her in the book, which made it easier to get her to take my requests on board. Only the book would have helped, that year.</p><p></p><p>"Monday 2 February 2004</p><p>Friday - we made the right decision [to keep him home from school]. He was unsettled and obsessive all day. Wed had to go out (various appointments which we combined with shopping) so having difficult child 3 with us meant we didnt have to worry about getting back home in time. He was tired and anxious about being away from home, even though we were on familiar territory. Just before heading home we had to go in different directions. Because difficult child 3 was getting anxious again I sent him along with Grandma so she wouldnt get lost. He immediately took her arm and didnt let go as he guided her through the various departments. It made him feel in control to be able to help her find her way. This reduced his anxiety to levels we could tolerate. We still had a couple of small stops which we had to explain (repeatedly) to help him settle.</p><p>Hes been very tired - mentally, mostly - since school returned. Hes commenting on how he feels better equipped to cope with teasing, although weve not observed much improvement (film night on Saturday - some younger kids were teasing him and he needed intervention, but he was maybe too tired to cope properly)."</p><p>I'd put in comments like, "I know he will annoy you sometimes, feel free to dump on us through this book - crikey, if we don't understand, who would?"</p><p></p><p>And if the teacher wrote, "I could have wrung his neck today and laughed through the whole process," we did NOT react with shock and horror, we merely said in the next entry, "Sorry you had such a bad day with him. We get those at home too. Here's hoping today is better." Or we might say, "Oops. Forgot to give him his medications. Although we're careful, this does happen sometimes. We've left spare medication with the school nurse - if you're ever unsure if he's had his medications, feel free to ring me and ask; If he's missed it, I will then authorise the school nurse over the phone to go ahead and dose him. Again, my apologies. Hope you had a stiff drink ready when you got home."</p><p></p><p>This still keeps it short, but effective, light and friendly. Also, the more you do this regularly, the less need for long explanations. The teacher's time is limited, they do appreciate brevity. They also appreciate humour - something I used to do was save up the best jokes we got over the email, print them out and deliver them to the school - teachers eyes only (too rude for students). I might often include a note, "Here's something to reward you for the stress of teaching our son. Laughter is the best medicine - enjoy!"</p><p></p><p>They also knew that at no time was my apparent informal approach signifying a lax attitude to his needs - if there was a problem with officialdom. I'd be on the phone sorting it out fast. I would write official letters when needed, especially on the subject of school detention often given to my son for being accused of bullying, when all he'd done was defend himself. I also objected to the school's discipline policy as being inappropriate, ineffective and damaging. They got a terse letter from me about that, hand-delivered with me almost in tears because although I don't like the way these people teach a lot of the time, a lot of them are still my friends in a small community.</p><p></p><p>The other thing that helps is to be indispensible to the school in some other way, such as volunteering for something and doing a good job. Only do this if you can, but it shows them that you ARE a team player, which is what is needed when trying to deal with a difficult child.</p><p></p><p>And my last point, on raising the topic of Prader-Willi with the doctor - simply say, "doctor, I need you to make a formal judgement on this because my mother WILL NOT let it go - I do not think my son has Prader-Willi, but my mother insists I ask you. Please can you give me what I need to make hr let go of this?"</p><p></p><p>From what you say, I agree he doesn't sound like Prader-Willi. The other aspects found at birth, such as t he low muscle tone, the hypogonadism, etc all would have sparked alarm bells either at birth or at various check-ups later. You would have noticed significant problems with feeding from Day 1, and behaviour - he would have been screaming for feeding constantly. No way. I have not heard of this being diagnosed so late in life - it's so bleedin' obvious from so early. And so hard to not kill them by letting them eat as much as they want. I mean, we're taught to breastfeed a baby until baby has had enough. "The baby knows," we're told. Not in Prader-Willi. If you bottle-fed, you would have had him screaming for food even after polishing off a big formula bottle. </p><p></p><p>Prader-Willi babies also don't have a gag reflex. If they get a gastric bug or food poisoning, they often have to have their stomach pumped. You can't give them an emetic, they simply won't bring it up. If you mother insists he's Prader-Willi, get her to try sticking her fingers down his throat. If he throws up on her (as he should) she deserves it. If he doesn't, then ask the doctor.</p><p></p><p>If he's ever vomited, even as a newborn 'spitting up', then it's highly unlikely it's Prader-Willi.</p><p></p><p>Good luck.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 71486, member: 1991"] Stressed, you did all the right things. have faith in yourself. You've been badly burned by previous experiences, especially the previous school, and you need to let THIS school know that so they don't think you're incompetent, just insecure. because you are NOT incompetent. Just the opposite. I'm going from memory here, having scanned the posts: Your calling difficult child on his tantrum in the nurse's office was definitely win-win. Even if she wasn't looking, the nurse heard it. She also sounds very sharp (or it was just lucky) - she had turned her chair back to her desk so her back was partly to difficult child. This is a signal that she is letting, you, the mother, handle the situation (ie she could already see you knew what you were about). It was also a rejection of difficult child's attention-seeking behaviour, so it was her way of letting you (and difficult child) know that she has his number. I think this is darn good. Your email - too long. WW is right, you're sounding too desperate to justify yourself. You need a communication book instead of emails. It's more informal so it means you can say more without it seeming so significant; yet the viral information is there. You CAN say what you need to and still not sound terse - throw in a funny comment, an aside, to show you're still smiling, even if it's through gritted teeth at your frustrating son. I'm giving you a real example, names edited out and small explanations put in square brackets. This is from a few years ago, when difficult child 3 was in mainstream. He was 9 years old. This is an entire day's entry. I did not do entries on every day, only if there was new information or the need to keep the teacher fully informed as to his mood or level of fitness. Any crisis (behavioural) I notified them so they would know if he was more likely to be upset. At the time we were writing these entries difficult child 3 was suffering from such severe anxiety that he was vomiting and having low-grade fevers; his teacher insisted there was a physical problem needing investigation. As we had previously expected, she turned out to be a major factor in his anxiety because she's so strict, will not listen to parents and insists on doing things her way, even against professional advice. I still managed to stay polite and civil to her in the book, which made it easier to get her to take my requests on board. Only the book would have helped, that year. "Monday 2 February 2004 Friday - we made the right decision [to keep him home from school]. He was unsettled and obsessive all day. Wed had to go out (various appointments which we combined with shopping) so having difficult child 3 with us meant we didnt have to worry about getting back home in time. He was tired and anxious about being away from home, even though we were on familiar territory. Just before heading home we had to go in different directions. Because difficult child 3 was getting anxious again I sent him along with Grandma so she wouldnt get lost. He immediately took her arm and didnt let go as he guided her through the various departments. It made him feel in control to be able to help her find her way. This reduced his anxiety to levels we could tolerate. We still had a couple of small stops which we had to explain (repeatedly) to help him settle. Hes been very tired - mentally, mostly - since school returned. Hes commenting on how he feels better equipped to cope with teasing, although weve not observed much improvement (film night on Saturday - some younger kids were teasing him and he needed intervention, but he was maybe too tired to cope properly)." I'd put in comments like, "I know he will annoy you sometimes, feel free to dump on us through this book - crikey, if we don't understand, who would?" And if the teacher wrote, "I could have wrung his neck today and laughed through the whole process," we did NOT react with shock and horror, we merely said in the next entry, "Sorry you had such a bad day with him. We get those at home too. Here's hoping today is better." Or we might say, "Oops. Forgot to give him his medications. Although we're careful, this does happen sometimes. We've left spare medication with the school nurse - if you're ever unsure if he's had his medications, feel free to ring me and ask; If he's missed it, I will then authorise the school nurse over the phone to go ahead and dose him. Again, my apologies. Hope you had a stiff drink ready when you got home." This still keeps it short, but effective, light and friendly. Also, the more you do this regularly, the less need for long explanations. The teacher's time is limited, they do appreciate brevity. They also appreciate humour - something I used to do was save up the best jokes we got over the email, print them out and deliver them to the school - teachers eyes only (too rude for students). I might often include a note, "Here's something to reward you for the stress of teaching our son. Laughter is the best medicine - enjoy!" They also knew that at no time was my apparent informal approach signifying a lax attitude to his needs - if there was a problem with officialdom. I'd be on the phone sorting it out fast. I would write official letters when needed, especially on the subject of school detention often given to my son for being accused of bullying, when all he'd done was defend himself. I also objected to the school's discipline policy as being inappropriate, ineffective and damaging. They got a terse letter from me about that, hand-delivered with me almost in tears because although I don't like the way these people teach a lot of the time, a lot of them are still my friends in a small community. The other thing that helps is to be indispensible to the school in some other way, such as volunteering for something and doing a good job. Only do this if you can, but it shows them that you ARE a team player, which is what is needed when trying to deal with a difficult child. And my last point, on raising the topic of Prader-Willi with the doctor - simply say, "doctor, I need you to make a formal judgement on this because my mother WILL NOT let it go - I do not think my son has Prader-Willi, but my mother insists I ask you. Please can you give me what I need to make hr let go of this?" From what you say, I agree he doesn't sound like Prader-Willi. The other aspects found at birth, such as t he low muscle tone, the hypogonadism, etc all would have sparked alarm bells either at birth or at various check-ups later. You would have noticed significant problems with feeding from Day 1, and behaviour - he would have been screaming for feeding constantly. No way. I have not heard of this being diagnosed so late in life - it's so bleedin' obvious from so early. And so hard to not kill them by letting them eat as much as they want. I mean, we're taught to breastfeed a baby until baby has had enough. "The baby knows," we're told. Not in Prader-Willi. If you bottle-fed, you would have had him screaming for food even after polishing off a big formula bottle. Prader-Willi babies also don't have a gag reflex. If they get a gastric bug or food poisoning, they often have to have their stomach pumped. You can't give them an emetic, they simply won't bring it up. If you mother insists he's Prader-Willi, get her to try sticking her fingers down his throat. If he throws up on her (as he should) she deserves it. If he doesn't, then ask the doctor. If he's ever vomited, even as a newborn 'spitting up', then it's highly unlikely it's Prader-Willi. Good luck. Marg [/QUOTE]
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