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Help why do they think Im the cause?
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<blockquote data-quote="Marguerite" data-source="post: 239736" data-attributes="member: 1991"><p>I agree about the hyperlexia, SRL. I think MWM was also thinking along the same lines. It would fit with the paediatrician suggesting Pervasive Developmental Disorder (PDD)-not otherwise specified (also compatible with hyperlexia).</p><p></p><p>Matty's Mummy, hang in there. It is VERY frustrating, but you do have to be patient with the idiots you will encounter. The teacher who said, "my my, what a wonderful memory" - tell her that if she wants to test her theory, then she has to be prepared for you to challenge it. To prove the teacher correct (as a good, scientifically-minded teacher should accept) then she should go to the shelves and select a book he hasn't seen before, then ask him to read it. That way there is no way she can declare he's doing it from memory.</p><p></p><p>We went through the same thing with difficult child 3 - he was reading fluently at 3 but was non-verbal. Bizarre. To be more correct, the week after he turned 2, we have him on video typing the lower case alphabet into the computer. The computer would prompt with the lower case letter on the screen and difficult child 3 would match it with the upper case letter on the keyboard. He then quickly went to whole words, especially words he had used to him. To teach him a word we wrote it down doe him with a picture of what the word was. We then would read it to him and either act out the meaning of the word or in some other way show him what it meant. From that point on, it became a word in his covabulary. But by about 3, he was reading phonemes. In other words, he understood sounds and the look of them and could put them together into words. But he often mispronounced where it was a phoneme that broke the rules (ie bough, cough, through).</p><p></p><p>We had had to deal with a lot of idiots. Sometimes it comes form someone you really thought was supportive - I remember difficult child 3's Year 1 teacher at the end of her tether, almost screaming at me, "Your son has ODD - I'm convinced of it! I could strangle him sometimes!"</p><p>I was very upset with her, although overall she has been one of his best teachers and I could still go to her and discuss him and how he's going, and know I'd get a good hearing. </p><p></p><p>Do you use a Communication Book with the teacher? It can help. But you need to be generous with the teacher, you will never guarantee a meeting of minds where your son is concerned.</p><p></p><p>I guess what I'm trying to say - for your own peace of mind, lower your standards for other people. You can still keep your aims for other people just as high, but give them some slack.</p><p></p><p>example - you are an ambitious parent with a gifted child in high school. You want your child to do really well. Your AIM is for your child to get the top marks in the state in Year 12, but you will SETTLE for Dux of the school.</p><p></p><p>The scenario you described about the multi-disciplinary team and their litle glances to each other, and the way they wondered why you had been sent to them - your evaluation could have been correct, that you had been sent there because the doctor thought you didn't have a clue (when in fact you probably know more than they do). However, your response to the situation probably didn't help you make progress. That sort of thing happens. It happens far too much and is annoying. In your case, it's probably more than annoying, because of the distances tyou have to travel. But it WILL keep happening, if you don't complete the circle. And you do need to complete it, in order to put a stop to this sort of nonsense.</p><p></p><p>To complete the circle - you go back to the referring doctor, you look him in the eye and say, "OK, now tell me what YOU expected to achieve with that referral."</p><p>Talk it out. Explain that they basically sent you away because they had nothing more they could teach you, you've already learnt more than they have. Ask him what the next step could be.</p><p></p><p>There can be several reasons for the doctor to do what he did; the most likely reason is, he is so desperate to help, that he was clutching at straws. Doctors become doctors because they want to help. They really get upset when they have patients they can't fix easily. Some doctors really dig in and try to help; others take the easy way out, blame someone else and refer you permanently out the door.</p><p></p><p>You can have two responses to this.</p><p>1) Call him an idiot and walk away, because you feel like you are wasting your time.</p><p></p><p>Or</p><p></p><p>2) Stick around and re-educate him. Calling him an idiot is still optional.</p><p></p><p>Where possible, I take option (2). It has proven to be incredibly valuable. The reason - if you stick around, the doctor has to accept you aren't going to go away easily so he may as well actively try to do something. Also, as the doctor explors (and eventually rejects) all the silly ideas, what is eventually left is the more likely things.</p><p></p><p>You need to make it clear - you are a vital link in y our child's health care. You require the involvement of the doctor because, as someone who has studied at university, he has access to some expert knowledge and book learning that you require. You need his services, as youwould hire a plumber to put in a new tap or an electrician to instal a ceiling fan. You know what needs to be done in broad; you are hiring the services of someone to do the spade work.</p><p></p><p>A medical expert is someone you need to help your child in areas beyond your capaibilty. However, as you go down this road you yourself are learning a great deal, to the point where you are becoming an expert of equal capability. You need a doctor who will listen to you, discuss possible ideas with you and will believe in you. </p><p></p><p>This takes time. You have to work hard to develop this relationship. A good doctor is one who is also working with you from his side, to develop and maintain a good, effective working relationship to the eventual benefit of your child. Along the way you will each do and say idiotic things. You want the doctor to be generous and forgiving about this; you need to do the same. Again, you may never have a full meeting of minds. That would be the ultimate aim, but you need to lower the standards here. All you really need is someone who will help your child and take your concerns seriously. You probably each vote for different parties; that won't matter. And you can sometimes find help in unexpected places.</p><p></p><p>Another 'rule' of mine - the more specialised the specialist, the lower you have to have your standards of human decency and kindness, because the more specialised a doctor, the rarer they are and the less nice they need to be. If you ever get to see the top specialists in the field, be prepared for them to be really nasty. But extremely competent.</p><p></p><p>But it is possible to be lucky, even with the top person. I've met a couple of extremely senior,extremely specialised doctors and they have been wonderful people, so even my rule can be broken.</p><p></p><p>Keep the focus on your child and what they can do for him. Try to not take on board any apparent negative thoughts you think they are having about you - what do YOU care if they go home at the end of the day thinking you're a sandwich short of a picnic? As long as they are doing everything THEY can do for your child, that is all that matters.</p><p></p><p>Whenever I've encountered someone who I felt was barking up the wrong tree (or even barking mad) I've usually stuck with them at least long enough for them to discover that they've got it wrong. If for whatever reason I'm gone before they have been proven wrong, I usually still give feedback, but in a positive light. [Comments in square brackets arewhat you really are thinking; not for publication]. "Hey, Dr S, I just thought I'd drop you a line to let you know how well my child H is doing. I know just how hard you worked on his case [you were a lazy B who did nothing] and how baffled you were by his symptoms [you thought it was all in my mind, you lousy hypocrite]. Well, you will be pleased to know that he has finally been diagnosed. Dr K, who graduated from City University in 2004 [he's a young whippersnapper, wet behind the ears, and he could do far more than you ever did] recognised a key symptom and connected it to a paper he'd recently read [at least HE keeps up with his reading]. I just thought you'd like to know, we've finally got an answer. Thank you for all you did for us [thanks for nothing, buster]."</p><p></p><p>Not only does it close the circle, it also is VERY therapeutic (although only if you don't put in the stuff in square brackets). And there is always the chance thay you have successfully made your point, and the old doctor will be a bit more careful with the next tricky patient to walk into his consulting rooms.</p><p></p><p>IN other words - don't walk away too readily. Instead, stick around, be as compliant as you can and in doing so, give them plenty of rope.</p><p></p><p>Medicine is an inexact science. They really DON'T know everything. And getting to the answer is tricky, it's like walking a minefield in the dark, but with a pencil and paper and torch so you can mark on a map where you've been and use the torch to see to the next landmark. You will make some silly mistakes, make some wrong conclusions, but it all comes down to the doctor having a hypothesis and then testing that hypothesis. Whenever a doctor refers you to the wrong people, it is still a valuable learning exercise, because THEY will each write back to him and say, "What were you playing at?"</p><p></p><p>ANd after the doctor has ruled out idea A, idea B, hypothesis C, possibilities D, E and F, eventually he has to get to some more likely answers. He will make a lot of mistakes along the way but if he is sufficiently persistent (and so are you) then he will get there.</p><p></p><p>We first suspected there was something wrong with difficult child 3 when he was just over a year old. But all the health professionals I asked said there was nothing wrong. The clinic sister said, "He's fine, he just has a head full of brains." But as he got older, 18 months and still not talking, the clinic sister suggested we put our names down for speech pathology assessment. Unfortunately for us, that clinic sister left (died of cancer) and the one who followed her was more interested in difficult child 3's diet than his language delay. I lost continuity - a big problem, when you're trying to get your child diagnosed. I changed jobs at that point and it was the child care people who finally blew the whistle on me and called DOCS on me for "emotional neglect". By this stage I had been told to stop wasting the doctors' time, so I was very upset and very angry. However, I faced it and I won, because I could point to the records to show we had been looking. And the very same people who I thought were idiots who were persecuting me, were the ones who turned round and said, "We can't help you any further, but we can tell you this - you are a good mother, and we think your child probably does have some form of autism. We've done more testing than we should hve, the next people you need tosee for some good answers are here..." and they handed me a piece of paper. I doing this, they went far beyond the scope of their task but I was very grateful, they saved us some time. And I had been angry with these people for wasting MY time!</p><p></p><p>difficult child 1 - the process to get him diagnosed took 8 years. difficult child 3 - from my first enquiry at 12 months, to final confirmed diagnosis at 3 and a half - that's 30 months. He missed out on vital early intervention, because of this time-wasting. But it is the system at fault, as much as individuals.</p><p></p><p>A strong suggestion for you - write all this down. In other words, set yourself the task to write the book of your struggle with your child's diagnosis. It will document it all (which you need) and also help you keep track of everything. It also helps keep it in perspective. You can lose yourself in the struggle to get answers for your child. Writing can help you find yourself again.</p><p></p><p>YOu've been down this road before, in different ways. Butwhen your childlooks normal, the story is very different.</p><p></p><p>Hang in there. It's a rough ride, but it does get better eventually.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 239736, member: 1991"] I agree about the hyperlexia, SRL. I think MWM was also thinking along the same lines. It would fit with the paediatrician suggesting Pervasive Developmental Disorder (PDD)-not otherwise specified (also compatible with hyperlexia). Matty's Mummy, hang in there. It is VERY frustrating, but you do have to be patient with the idiots you will encounter. The teacher who said, "my my, what a wonderful memory" - tell her that if she wants to test her theory, then she has to be prepared for you to challenge it. To prove the teacher correct (as a good, scientifically-minded teacher should accept) then she should go to the shelves and select a book he hasn't seen before, then ask him to read it. That way there is no way she can declare he's doing it from memory. We went through the same thing with difficult child 3 - he was reading fluently at 3 but was non-verbal. Bizarre. To be more correct, the week after he turned 2, we have him on video typing the lower case alphabet into the computer. The computer would prompt with the lower case letter on the screen and difficult child 3 would match it with the upper case letter on the keyboard. He then quickly went to whole words, especially words he had used to him. To teach him a word we wrote it down doe him with a picture of what the word was. We then would read it to him and either act out the meaning of the word or in some other way show him what it meant. From that point on, it became a word in his covabulary. But by about 3, he was reading phonemes. In other words, he understood sounds and the look of them and could put them together into words. But he often mispronounced where it was a phoneme that broke the rules (ie bough, cough, through). We had had to deal with a lot of idiots. Sometimes it comes form someone you really thought was supportive - I remember difficult child 3's Year 1 teacher at the end of her tether, almost screaming at me, "Your son has ODD - I'm convinced of it! I could strangle him sometimes!" I was very upset with her, although overall she has been one of his best teachers and I could still go to her and discuss him and how he's going, and know I'd get a good hearing. Do you use a Communication Book with the teacher? It can help. But you need to be generous with the teacher, you will never guarantee a meeting of minds where your son is concerned. I guess what I'm trying to say - for your own peace of mind, lower your standards for other people. You can still keep your aims for other people just as high, but give them some slack. example - you are an ambitious parent with a gifted child in high school. You want your child to do really well. Your AIM is for your child to get the top marks in the state in Year 12, but you will SETTLE for Dux of the school. The scenario you described about the multi-disciplinary team and their litle glances to each other, and the way they wondered why you had been sent to them - your evaluation could have been correct, that you had been sent there because the doctor thought you didn't have a clue (when in fact you probably know more than they do). However, your response to the situation probably didn't help you make progress. That sort of thing happens. It happens far too much and is annoying. In your case, it's probably more than annoying, because of the distances tyou have to travel. But it WILL keep happening, if you don't complete the circle. And you do need to complete it, in order to put a stop to this sort of nonsense. To complete the circle - you go back to the referring doctor, you look him in the eye and say, "OK, now tell me what YOU expected to achieve with that referral." Talk it out. Explain that they basically sent you away because they had nothing more they could teach you, you've already learnt more than they have. Ask him what the next step could be. There can be several reasons for the doctor to do what he did; the most likely reason is, he is so desperate to help, that he was clutching at straws. Doctors become doctors because they want to help. They really get upset when they have patients they can't fix easily. Some doctors really dig in and try to help; others take the easy way out, blame someone else and refer you permanently out the door. You can have two responses to this. 1) Call him an idiot and walk away, because you feel like you are wasting your time. Or 2) Stick around and re-educate him. Calling him an idiot is still optional. Where possible, I take option (2). It has proven to be incredibly valuable. The reason - if you stick around, the doctor has to accept you aren't going to go away easily so he may as well actively try to do something. Also, as the doctor explors (and eventually rejects) all the silly ideas, what is eventually left is the more likely things. You need to make it clear - you are a vital link in y our child's health care. You require the involvement of the doctor because, as someone who has studied at university, he has access to some expert knowledge and book learning that you require. You need his services, as youwould hire a plumber to put in a new tap or an electrician to instal a ceiling fan. You know what needs to be done in broad; you are hiring the services of someone to do the spade work. A medical expert is someone you need to help your child in areas beyond your capaibilty. However, as you go down this road you yourself are learning a great deal, to the point where you are becoming an expert of equal capability. You need a doctor who will listen to you, discuss possible ideas with you and will believe in you. This takes time. You have to work hard to develop this relationship. A good doctor is one who is also working with you from his side, to develop and maintain a good, effective working relationship to the eventual benefit of your child. Along the way you will each do and say idiotic things. You want the doctor to be generous and forgiving about this; you need to do the same. Again, you may never have a full meeting of minds. That would be the ultimate aim, but you need to lower the standards here. All you really need is someone who will help your child and take your concerns seriously. You probably each vote for different parties; that won't matter. And you can sometimes find help in unexpected places. Another 'rule' of mine - the more specialised the specialist, the lower you have to have your standards of human decency and kindness, because the more specialised a doctor, the rarer they are and the less nice they need to be. If you ever get to see the top specialists in the field, be prepared for them to be really nasty. But extremely competent. But it is possible to be lucky, even with the top person. I've met a couple of extremely senior,extremely specialised doctors and they have been wonderful people, so even my rule can be broken. Keep the focus on your child and what they can do for him. Try to not take on board any apparent negative thoughts you think they are having about you - what do YOU care if they go home at the end of the day thinking you're a sandwich short of a picnic? As long as they are doing everything THEY can do for your child, that is all that matters. Whenever I've encountered someone who I felt was barking up the wrong tree (or even barking mad) I've usually stuck with them at least long enough for them to discover that they've got it wrong. If for whatever reason I'm gone before they have been proven wrong, I usually still give feedback, but in a positive light. [Comments in square brackets arewhat you really are thinking; not for publication]. "Hey, Dr S, I just thought I'd drop you a line to let you know how well my child H is doing. I know just how hard you worked on his case [you were a lazy B who did nothing] and how baffled you were by his symptoms [you thought it was all in my mind, you lousy hypocrite]. Well, you will be pleased to know that he has finally been diagnosed. Dr K, who graduated from City University in 2004 [he's a young whippersnapper, wet behind the ears, and he could do far more than you ever did] recognised a key symptom and connected it to a paper he'd recently read [at least HE keeps up with his reading]. I just thought you'd like to know, we've finally got an answer. Thank you for all you did for us [thanks for nothing, buster]." Not only does it close the circle, it also is VERY therapeutic (although only if you don't put in the stuff in square brackets). And there is always the chance thay you have successfully made your point, and the old doctor will be a bit more careful with the next tricky patient to walk into his consulting rooms. IN other words - don't walk away too readily. Instead, stick around, be as compliant as you can and in doing so, give them plenty of rope. Medicine is an inexact science. They really DON'T know everything. And getting to the answer is tricky, it's like walking a minefield in the dark, but with a pencil and paper and torch so you can mark on a map where you've been and use the torch to see to the next landmark. You will make some silly mistakes, make some wrong conclusions, but it all comes down to the doctor having a hypothesis and then testing that hypothesis. Whenever a doctor refers you to the wrong people, it is still a valuable learning exercise, because THEY will each write back to him and say, "What were you playing at?" ANd after the doctor has ruled out idea A, idea B, hypothesis C, possibilities D, E and F, eventually he has to get to some more likely answers. He will make a lot of mistakes along the way but if he is sufficiently persistent (and so are you) then he will get there. We first suspected there was something wrong with difficult child 3 when he was just over a year old. But all the health professionals I asked said there was nothing wrong. The clinic sister said, "He's fine, he just has a head full of brains." But as he got older, 18 months and still not talking, the clinic sister suggested we put our names down for speech pathology assessment. Unfortunately for us, that clinic sister left (died of cancer) and the one who followed her was more interested in difficult child 3's diet than his language delay. I lost continuity - a big problem, when you're trying to get your child diagnosed. I changed jobs at that point and it was the child care people who finally blew the whistle on me and called DOCS on me for "emotional neglect". By this stage I had been told to stop wasting the doctors' time, so I was very upset and very angry. However, I faced it and I won, because I could point to the records to show we had been looking. And the very same people who I thought were idiots who were persecuting me, were the ones who turned round and said, "We can't help you any further, but we can tell you this - you are a good mother, and we think your child probably does have some form of autism. We've done more testing than we should hve, the next people you need tosee for some good answers are here..." and they handed me a piece of paper. I doing this, they went far beyond the scope of their task but I was very grateful, they saved us some time. And I had been angry with these people for wasting MY time! difficult child 1 - the process to get him diagnosed took 8 years. difficult child 3 - from my first enquiry at 12 months, to final confirmed diagnosis at 3 and a half - that's 30 months. He missed out on vital early intervention, because of this time-wasting. But it is the system at fault, as much as individuals. A strong suggestion for you - write all this down. In other words, set yourself the task to write the book of your struggle with your child's diagnosis. It will document it all (which you need) and also help you keep track of everything. It also helps keep it in perspective. You can lose yourself in the struggle to get answers for your child. Writing can help you find yourself again. YOu've been down this road before, in different ways. Butwhen your childlooks normal, the story is very different. Hang in there. It's a rough ride, but it does get better eventually. Marg [/QUOTE]
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