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<blockquote data-quote="Marguerite" data-source="post: 24437" data-attributes="member: 1991"><p>Hi Bonkers (not sure I like calling you that!). Welcome back, I was wondering how you and your partner were getting on.</p><p></p><p>On the subject of ADD/not ADD - difficult child 3 has a diagnosis of ADHD which, on consideration, I feel is not really ADHD. I think in his case it's an extension of his autism. However, for difficult child 3 medications have been almost miraculous. He also started on dexamphetamine at three years old, much to the horror of people who we know. People were appalled. But we were desperate enough to try anything and the result really was amazing. difficult child 3, whose language skills were limited, began to talk and within a week was using sentences. On days when we failed to medicate him there were outbursts, rages and a total inability to cope with a wide range of sensory input. And this wasn't rebound - we went through that at one stage with difficult child 1. difficult child 3 missed his medications for a couple of weeks at one point and after a week had lost a vast amount of language. It was really frightening.</p><p></p><p>I'm not telling you this as a way to urge you to medicate your son - you have your reasons for not doing this. I just wanted you to see that often with kids like ours what you get is not what you expect. Our kids are often showing us how preconceptions can be misleading. Even if you don't think your son has ADD (and you may be right - after all, you're the one living with him) this doesn't mean the medications wouldn't help.</p><p></p><p>But they also may not. Similarly, we might have tried them and found them to be a disaster. For a lot of schools who have seen some wonderful, almost magical transformations, medication seems to be the Great White Hope; the ultimate Answer. But this is simplistic.</p><p></p><p>You commented after MWM's first post when she mentioned other possibilities, that some of her suggestions, while helpful, were a bit alarming for you - was that the mention of high-functioning autism that scared you? I hope not, but if it was it is another example of how society predisposes us to panic at the mention of a word which no longer should hold fear for us.</p><p></p><p>My reaction when told difficult child 3 was autistic (I had been expecting maybe Asperger's) was grief, despair and then anger. We were told he'd never be able to go to a normal school. He wasn't capable of much intellectually. But boy, were they wrong. And we felt the diagnosis had to be wrong - autistic kids are in their own world and avoid other people - difficult child 3 has always been incredibly social, he would go home with a total stranger if we let him. He never had a problem meeting new people, would go to a total stranger as readily as to me. And yet - we now understand why he has this diagnosis. However, they were wrong about his prognosis.</p><p></p><p>And they were wrong for a lot of reasons, not the least being that autism is not a closed book. These kids are blank pages with a lot of potential, if only you can find the language in which to write. And whenever you're trying to decode a book it's best to first familiarise yourself with the language. When you use the same language and you're on the same page you have a better chance of breaking through.</p><p></p><p>But this is just an example. Misdiagnoses are amazingly common. For example, you consider ADD to be a misdiagnosis. So what else could they have missed? Always keep an open mind. Meanwhile, try and get inside his head (which sounds like what you are trying to do). The label can help get material and practical support. Your observations and understanding can help you reach him and connect. You don't use a label with that.</p><p></p><p>Our difficult child 3 is far from normal, but he has come such a long way. We recognise that a lot of it is his determination, but he has needed to feel safe and supported in order to have the confidence to keep trying. We wasted a lot of years in the process. Now we have a bright, confident, motivated, honest student achieving consistently highly.</p><p></p><p>What I'm saying - there is hope. But it's also needing some intensive involvement from you and your partner, with support from school.</p><p></p><p>One very strong recommendation I make to you - keep a diary for him. A Communication Book can be a much greater help than people realise, in heading problems off at the pass. It provides a greater level of communication between home and school with more immediacy. It works like this:</p><p>You get a blank exercise book and put a label on it (his name, and "Communication Book", plus the request for all involved to write in it anything of interest, good or bad, to facilitate rapid response and good communication). Then cover it with sturdy plastic. The book stays in his school bag. I emphasise (as the result of our past problems) - it is NOT to be the child's responsibility to give the book to the teacher, or to you. The book is not for him to read. At home, you take the book out of his bag. At school, the teacher does. This is vital.</p><p>You write in the book anything which you think would help the teacher to know. For example - "He's running late today, he slept in and is irritable." This gives the teacher advance notice that he's likely to be more reactive than usual. She might write, "He had a better morning than you anticipated. However, playtime wasn't good, I think we might need to put more supervision in place." Or whatever is happening.</p><p>As well as this, keep a diary on your computer (I doubled up and did both - the diary comprised my entries in the Book) so you can look back in a year's time and see if there is a pattern. For example, you feel there was a connection between seeing various psychologists and t he rise of some problem behaviours. The Communication Book helps you nail this in place, or discount it. It is concrete evidence which can save you a lot of time and trouble. The sooner you recognise such a problem, the sooner you can step in and stop whatever is happening to make things worse.</p><p></p><p>This may seem trivial, but it made a huge difference to us. The teachers generally embraced this because it meant fewer classroom steps consults, with an exhausted teacher desperate to get home for a stiff drink, or maybe a valium and a good lie down. It is in THEIR interests to support this.</p><p></p><p>The times we had most troubles - they were the times when the teacher felt the Book was no longer needed, and tried to wean us off it. Needless to say, at the next IEP meeting the Book was reinstated and problems eased.</p><p></p><p>I suggest this because it is not just for kids with autism. This works for any kids with behaviour problems with complex causes. If you can sort out problems within hours instead of days or weeks, there is more immediacy in how you handle things. </p><p></p><p>Two final rules - </p><p>1) Do not punish school misbehaviour, at home. The school is handling it. However, do not undermine the school either. If you think they are wrong, sort it out between you away from his presence.</p><p></p><p>2) Allow teaches to vent. Do not get angry with a teacher who writes, "Your kid was a total BRAT today!!!!!" Surely you understand the frustration? Instead, be grateful the teacher feels sufficiently safe to confide feelings to you. Always value the honesty, even when it hurts. If you feel the teacher has misjudged your child, that is different. But recognise that people make mistakes.</p><p></p><p>It sounds to me like you are really doing the absolute best you can. And the continuing problems would indicate that there is something in him that needs to be helped. It's not you guys, in other words.</p><p></p><p>Keep us posted, let us know how you're getting on.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 24437, member: 1991"] Hi Bonkers (not sure I like calling you that!). Welcome back, I was wondering how you and your partner were getting on. On the subject of ADD/not ADD - difficult child 3 has a diagnosis of ADHD which, on consideration, I feel is not really ADHD. I think in his case it's an extension of his autism. However, for difficult child 3 medications have been almost miraculous. He also started on dexamphetamine at three years old, much to the horror of people who we know. People were appalled. But we were desperate enough to try anything and the result really was amazing. difficult child 3, whose language skills were limited, began to talk and within a week was using sentences. On days when we failed to medicate him there were outbursts, rages and a total inability to cope with a wide range of sensory input. And this wasn't rebound - we went through that at one stage with difficult child 1. difficult child 3 missed his medications for a couple of weeks at one point and after a week had lost a vast amount of language. It was really frightening. I'm not telling you this as a way to urge you to medicate your son - you have your reasons for not doing this. I just wanted you to see that often with kids like ours what you get is not what you expect. Our kids are often showing us how preconceptions can be misleading. Even if you don't think your son has ADD (and you may be right - after all, you're the one living with him) this doesn't mean the medications wouldn't help. But they also may not. Similarly, we might have tried them and found them to be a disaster. For a lot of schools who have seen some wonderful, almost magical transformations, medication seems to be the Great White Hope; the ultimate Answer. But this is simplistic. You commented after MWM's first post when she mentioned other possibilities, that some of her suggestions, while helpful, were a bit alarming for you - was that the mention of high-functioning autism that scared you? I hope not, but if it was it is another example of how society predisposes us to panic at the mention of a word which no longer should hold fear for us. My reaction when told difficult child 3 was autistic (I had been expecting maybe Asperger's) was grief, despair and then anger. We were told he'd never be able to go to a normal school. He wasn't capable of much intellectually. But boy, were they wrong. And we felt the diagnosis had to be wrong - autistic kids are in their own world and avoid other people - difficult child 3 has always been incredibly social, he would go home with a total stranger if we let him. He never had a problem meeting new people, would go to a total stranger as readily as to me. And yet - we now understand why he has this diagnosis. However, they were wrong about his prognosis. And they were wrong for a lot of reasons, not the least being that autism is not a closed book. These kids are blank pages with a lot of potential, if only you can find the language in which to write. And whenever you're trying to decode a book it's best to first familiarise yourself with the language. When you use the same language and you're on the same page you have a better chance of breaking through. But this is just an example. Misdiagnoses are amazingly common. For example, you consider ADD to be a misdiagnosis. So what else could they have missed? Always keep an open mind. Meanwhile, try and get inside his head (which sounds like what you are trying to do). The label can help get material and practical support. Your observations and understanding can help you reach him and connect. You don't use a label with that. Our difficult child 3 is far from normal, but he has come such a long way. We recognise that a lot of it is his determination, but he has needed to feel safe and supported in order to have the confidence to keep trying. We wasted a lot of years in the process. Now we have a bright, confident, motivated, honest student achieving consistently highly. What I'm saying - there is hope. But it's also needing some intensive involvement from you and your partner, with support from school. One very strong recommendation I make to you - keep a diary for him. A Communication Book can be a much greater help than people realise, in heading problems off at the pass. It provides a greater level of communication between home and school with more immediacy. It works like this: You get a blank exercise book and put a label on it (his name, and "Communication Book", plus the request for all involved to write in it anything of interest, good or bad, to facilitate rapid response and good communication). Then cover it with sturdy plastic. The book stays in his school bag. I emphasise (as the result of our past problems) - it is NOT to be the child's responsibility to give the book to the teacher, or to you. The book is not for him to read. At home, you take the book out of his bag. At school, the teacher does. This is vital. You write in the book anything which you think would help the teacher to know. For example - "He's running late today, he slept in and is irritable." This gives the teacher advance notice that he's likely to be more reactive than usual. She might write, "He had a better morning than you anticipated. However, playtime wasn't good, I think we might need to put more supervision in place." Or whatever is happening. As well as this, keep a diary on your computer (I doubled up and did both - the diary comprised my entries in the Book) so you can look back in a year's time and see if there is a pattern. For example, you feel there was a connection between seeing various psychologists and t he rise of some problem behaviours. The Communication Book helps you nail this in place, or discount it. It is concrete evidence which can save you a lot of time and trouble. The sooner you recognise such a problem, the sooner you can step in and stop whatever is happening to make things worse. This may seem trivial, but it made a huge difference to us. The teachers generally embraced this because it meant fewer classroom steps consults, with an exhausted teacher desperate to get home for a stiff drink, or maybe a valium and a good lie down. It is in THEIR interests to support this. The times we had most troubles - they were the times when the teacher felt the Book was no longer needed, and tried to wean us off it. Needless to say, at the next IEP meeting the Book was reinstated and problems eased. I suggest this because it is not just for kids with autism. This works for any kids with behaviour problems with complex causes. If you can sort out problems within hours instead of days or weeks, there is more immediacy in how you handle things. Two final rules - 1) Do not punish school misbehaviour, at home. The school is handling it. However, do not undermine the school either. If you think they are wrong, sort it out between you away from his presence. 2) Allow teaches to vent. Do not get angry with a teacher who writes, "Your kid was a total BRAT today!!!!!" Surely you understand the frustration? Instead, be grateful the teacher feels sufficiently safe to confide feelings to you. Always value the honesty, even when it hurts. If you feel the teacher has misjudged your child, that is different. But recognise that people make mistakes. It sounds to me like you are really doing the absolute best you can. And the continuing problems would indicate that there is something in him that needs to be helped. It's not you guys, in other words. Keep us posted, let us know how you're getting on. Marg [/QUOTE]
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