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Help why do they think Im the cause?
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<blockquote data-quote="Marguerite" data-source="post: 240168" data-attributes="member: 1991"><p>I nearly didn't mention Munchhausen's by proxy, because I did worry that you might obsees about it a bit. But I decided to because I felt chances are, if you herd about it from somewhere else without what I had to say (about you just not fitting the description) you might worry even more.</p><p></p><p>The thing with Munchhausen's, the people with it KNOW they are causing the problem. You can't have it and not know. But one of the hallmarks of it, is someone who deals with the risk of being found out, by grabbing the kids and running. Also, the type of things the kids get diagnosed with, tend to be the sort of "I think it could be this but I'm not certain," type of thing. With the history with your kids, you can't fake a cleft lip and you can't fake an extra chromosome. So on the remote offchance some idiot ever tries to suggest that this applies to you, the best defence is to stand your ground and say, "Yeah? So how would I have faked THAT, huh?"</p><p></p><p>From the point of view of medical staff, they always have to consider all possibilities, including the ridiculous ones. But with the silly possibilities, they should be able to reject them fairly quickly also.</p><p></p><p>Example: with difficult child 3, the first thing they wanted to check (because he had language delay) was, how is his hearing? Could he have a problem there? So they sent him for a hearing test (not easy, in a kid who doesn't understand what you want of him) and also had a look down his throat and in his ears. Next hypothesis - he was emotionally neglected, not being stimulated. But they observed how we interacted with him and also with each other and quickly dismissed THAT idea. difficult child 3 was at that time interacting with us to some extent, playing some games with us (and especially with easy child). He also was remarkable with the way he could read numbers, letters and some words but they also observed at this point how obsessed he was. Next hypothesis - I was obsessed with teachnig him numbers and letters, I had been cramming him with it. But if so, what about the other kids? And what of the home environment? They would have seen fairly quickly, looking at me and our home, if I was over-stimulating difficult child 3 to the point where everything he looked at was only numbers and letters. Clearly, it wasn't. difficult child 3 was also playing the piano and was obsessed with listening to music. He willingly took himself to the piano and to the stereo speakers and the way he handled it all competently (which was amazing for a toddler) showed them that he was actively seeking this out, not having it forced onto him.</p><p></p><p>They had to consider all these negative options because it does happen, there are weird parents out there who do horrible things to their kids. It's annoying to sit there while they consider these insulting ideas, but if you stay the course, you come out the other side with credibility and a chance to finally see some action in the direction you want.</p><p></p><p>I'm glad you feel a bit more in control. From what you describe, some of the things you've labelled as Obsessive Compulsive Disorder (OCD) could well be stims. The hand-flapping, certainly. A young boy who lived in our village for about a year was a very bright 6 year old when we met. He's high-functioning autistic, being home-schooled. His obsession was electronic circuits, he actually wired up the little chip from a singing birthday card (which made it play "happy birthday" when the card was opened) to a pressure switch which he placed under a mat outside his bedroom door. That way the kid had made a rather novel "burglar alarm" of his own, every time anyone stepped on the mat, you would hear this tinkly "happy birthday" playing. Yes, I saw this for myself.</p><p>We went to the beach with this boy and his parents. difficult child 3 and the boy were having a wonderful time, you could see form their faces how happy they were. The little boy was sitting on the edge where the waves wash in and out over you, and his face was a picture of delight. His hands were held at shoulder height and were flapping, over and over. Constantly. The boy was stimming, unconsciously so, because he was excited and happy.</p><p>difficult child 3 has never flapped his hands, but the same effect can be gained by looking up through a tree at the flicker of light through the leaves. And he's ALWAYS done that, from a week old. I remember being amazed at the intense fascination he had for looking at trees. difficult child 3 always loved it when I walked as close to the leaves as possible, often letting the leaves brush across his face. He liked his face right up against the leaves of a tree. I picked a single leaf and held it for him - not interested. It had to be lots of leaves, on the tree.</p><p></p><p>You mentioned your difficult child rubbing a spot on his head until he rubbed it bald. difficult child 3 did something similar - he would pick at a scab or a scratch until it bled. He has scars on his arms because he keeps picking at small sebaceous "pimples" and really makes a mess of himself. It looks like psoriasis, it's so bad. He had a ganglion removed on his wrist and it was healnig well, but then he picked at the scar and opened it up again. It took months to heal. </p><p></p><p>When he was 8 he was hit on the head with a stick (some 'charming' kid at school) which left a small scab. But he picked at it over and over until there was a large crater, the size of a 50c piece and quite deep. I couldn't put a bandaid over it, I didn't know what to do about it. We put gloves on him a lot through winter and dabbed ti-tree oil on it. It took about ten months to finally heal. </p><p></p><p>If he has a small hole in his clothes, it will be a huge hole by the end of the day. He's better than he used to be, I can now often patch his clothes and save them that way. But I've avoided buying his clothes new, because he would chew them or tear them. difficult child 1 was just as bad.</p><p></p><p>Some of what I describe is stimming, some of it is Obsessive Compulsive Disorder (OCD). Anxiety can make them all worse; difficult child 1 had trouble at school with teachers yelling at him to sit still and be quiet, which only made him more fidgetty and he made even more noises. He often was unaware of the noises he was making. With difficult child 3, the teachers knew better than to try to contro lthe noises. Howeve,r difficult child 3 was aware of them (I suspect he was getting bullied a lot over his noises) and his vocal stims/tics are now much quieter.</p><p></p><p>A suggestion - don't refer to your son's behaviours as Obsessive Compulsive Disorder (OCD). That is you making a diagnosis which may not actually be correct. let someone else make the call. You can tell them, "He rubs his head until it's bald, he blows on his cup, he flaps his hands," but let the health professional try to work out why, how and when.</p><p></p><p>Another suggestion - I've at times had doctors get angry at me saying, "He has autism." Or with my own medical condition, I had doctors who didn't believe in the condition as a diagnosis, say, "That doesn't exist," and show me the door. So my current tactic is, "We've been told the diagnosis is ..." because that way if the doctor says, "That's crazy," I can reply with, "Don't argue with me about it, argue with the doctor who made the diagnosis."</p><p></p><p>Stay cool, Matty's Mummy. In more ways than one! (hey, at least we're not in Melbourne!)</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 240168, member: 1991"] I nearly didn't mention Munchhausen's by proxy, because I did worry that you might obsees about it a bit. But I decided to because I felt chances are, if you herd about it from somewhere else without what I had to say (about you just not fitting the description) you might worry even more. The thing with Munchhausen's, the people with it KNOW they are causing the problem. You can't have it and not know. But one of the hallmarks of it, is someone who deals with the risk of being found out, by grabbing the kids and running. Also, the type of things the kids get diagnosed with, tend to be the sort of "I think it could be this but I'm not certain," type of thing. With the history with your kids, you can't fake a cleft lip and you can't fake an extra chromosome. So on the remote offchance some idiot ever tries to suggest that this applies to you, the best defence is to stand your ground and say, "Yeah? So how would I have faked THAT, huh?" From the point of view of medical staff, they always have to consider all possibilities, including the ridiculous ones. But with the silly possibilities, they should be able to reject them fairly quickly also. Example: with difficult child 3, the first thing they wanted to check (because he had language delay) was, how is his hearing? Could he have a problem there? So they sent him for a hearing test (not easy, in a kid who doesn't understand what you want of him) and also had a look down his throat and in his ears. Next hypothesis - he was emotionally neglected, not being stimulated. But they observed how we interacted with him and also with each other and quickly dismissed THAT idea. difficult child 3 was at that time interacting with us to some extent, playing some games with us (and especially with easy child). He also was remarkable with the way he could read numbers, letters and some words but they also observed at this point how obsessed he was. Next hypothesis - I was obsessed with teachnig him numbers and letters, I had been cramming him with it. But if so, what about the other kids? And what of the home environment? They would have seen fairly quickly, looking at me and our home, if I was over-stimulating difficult child 3 to the point where everything he looked at was only numbers and letters. Clearly, it wasn't. difficult child 3 was also playing the piano and was obsessed with listening to music. He willingly took himself to the piano and to the stereo speakers and the way he handled it all competently (which was amazing for a toddler) showed them that he was actively seeking this out, not having it forced onto him. They had to consider all these negative options because it does happen, there are weird parents out there who do horrible things to their kids. It's annoying to sit there while they consider these insulting ideas, but if you stay the course, you come out the other side with credibility and a chance to finally see some action in the direction you want. I'm glad you feel a bit more in control. From what you describe, some of the things you've labelled as Obsessive Compulsive Disorder (OCD) could well be stims. The hand-flapping, certainly. A young boy who lived in our village for about a year was a very bright 6 year old when we met. He's high-functioning autistic, being home-schooled. His obsession was electronic circuits, he actually wired up the little chip from a singing birthday card (which made it play "happy birthday" when the card was opened) to a pressure switch which he placed under a mat outside his bedroom door. That way the kid had made a rather novel "burglar alarm" of his own, every time anyone stepped on the mat, you would hear this tinkly "happy birthday" playing. Yes, I saw this for myself. We went to the beach with this boy and his parents. difficult child 3 and the boy were having a wonderful time, you could see form their faces how happy they were. The little boy was sitting on the edge where the waves wash in and out over you, and his face was a picture of delight. His hands were held at shoulder height and were flapping, over and over. Constantly. The boy was stimming, unconsciously so, because he was excited and happy. difficult child 3 has never flapped his hands, but the same effect can be gained by looking up through a tree at the flicker of light through the leaves. And he's ALWAYS done that, from a week old. I remember being amazed at the intense fascination he had for looking at trees. difficult child 3 always loved it when I walked as close to the leaves as possible, often letting the leaves brush across his face. He liked his face right up against the leaves of a tree. I picked a single leaf and held it for him - not interested. It had to be lots of leaves, on the tree. You mentioned your difficult child rubbing a spot on his head until he rubbed it bald. difficult child 3 did something similar - he would pick at a scab or a scratch until it bled. He has scars on his arms because he keeps picking at small sebaceous "pimples" and really makes a mess of himself. It looks like psoriasis, it's so bad. He had a ganglion removed on his wrist and it was healnig well, but then he picked at the scar and opened it up again. It took months to heal. When he was 8 he was hit on the head with a stick (some 'charming' kid at school) which left a small scab. But he picked at it over and over until there was a large crater, the size of a 50c piece and quite deep. I couldn't put a bandaid over it, I didn't know what to do about it. We put gloves on him a lot through winter and dabbed ti-tree oil on it. It took about ten months to finally heal. If he has a small hole in his clothes, it will be a huge hole by the end of the day. He's better than he used to be, I can now often patch his clothes and save them that way. But I've avoided buying his clothes new, because he would chew them or tear them. difficult child 1 was just as bad. Some of what I describe is stimming, some of it is Obsessive Compulsive Disorder (OCD). Anxiety can make them all worse; difficult child 1 had trouble at school with teachers yelling at him to sit still and be quiet, which only made him more fidgetty and he made even more noises. He often was unaware of the noises he was making. With difficult child 3, the teachers knew better than to try to contro lthe noises. Howeve,r difficult child 3 was aware of them (I suspect he was getting bullied a lot over his noises) and his vocal stims/tics are now much quieter. A suggestion - don't refer to your son's behaviours as Obsessive Compulsive Disorder (OCD). That is you making a diagnosis which may not actually be correct. let someone else make the call. You can tell them, "He rubs his head until it's bald, he blows on his cup, he flaps his hands," but let the health professional try to work out why, how and when. Another suggestion - I've at times had doctors get angry at me saying, "He has autism." Or with my own medical condition, I had doctors who didn't believe in the condition as a diagnosis, say, "That doesn't exist," and show me the door. So my current tactic is, "We've been told the diagnosis is ..." because that way if the doctor says, "That's crazy," I can reply with, "Don't argue with me about it, argue with the doctor who made the diagnosis." Stay cool, Matty's Mummy. In more ways than one! (hey, at least we're not in Melbourne!) Marg [/QUOTE]
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