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<blockquote data-quote="Marguerite" data-source="post: 225402" data-attributes="member: 1991"><p>A thought from Down Under - while I cant help with the specifics of who to talk to, how, and what options you have, I do have some ideas for you.</p><p></p><p>1) You've already done so much, don't see your current situation as a failure. Every battle successfully navigated is a success. Even if you feel you're fighting a repeat version of that battle again later - you still got through it before, this is a new battle. Try to mentally tick off each battle as an achievement. If you get a similar battle to fight, remember that you have previous experience, and use your superior knowledge to your advantage.</p><p></p><p>2) When dealing with people who treat you like dirt, or who are slack about how they do their job, call them on it. Be polite, but firm. Point out that you ARE an expert at parenting your child and that you did not come down in the last shower. If necessary, make a list and explain to the doctor, "You're saying X about my child. You are not the first. But X has also been thoroughly discredited before, undoubtedly will be again. Will you work with me on this to save both time and effort, on both your behalf and mine? Let's cut to the chase here."</p><p>Never forget that you are entitled to be treated with respect and on an equal footing as an expert in your child's case. All you are doing when you consult doctors, is using them as a carpenter would use a saw or a plane, to do a job he can't do with his bare hands. A carpenter COULD just break a piece of timber at roughly the length he wants it, but it would be rough, it wouldn't be quite the right length and it would need a lot of tidying up before he could use that length of timber to make a bookcase. SO he uses a measure, a pencil and a saw to get the length of timber just right.</p><p>In the same way, you consult an expert to advise you, within that expert's knowledge, on things that you might have a broad idea of but need expert guidance. In that area, the expert can be relied on. But only in that area. You take the information (and any help) and add it to your mental data banks. So armed with that attitude, you should be able to get the message across that you aren't the average single parent, able to be browbeaten and bullied into not questioning too closely or insisting on appropriate treatment. Always remember - the squeaky wheel gets the oil. If you must, be a nuisance and keep asking for specific help. Make a shopping list of what you want (or ask the experts to give you a list of what is available to you) then ask them to help you get it. Ask for information on the steps you have to follow and take notes. Log your notes into the computer and keep your files up to date. If nothing else, one day you will be able to write a book (exposing the problems?)</p><p></p><p>3) Now you've doe a great deal, covered a lot of ground but still feel like you're running a Red Queen's Race, it's time to consolidate your knowledge and experience. So you sit down with a big piece of paper and go over everything that has been done. Do it as a mind map if you can, because chances are your experiences can't just be written down as a simple list. </p><p>Now do another mind map - this one is based on where you are at now, and all the options open to you. Include the ridiculous ones if you like; sometimes they're not so ridiculous, or sometimes they can lead to ones which are definitely "out there" but also likely to have an impact. </p><p>In your lists/maps, discuss the PMI of each option (PMI stands for Positive, Minus, Interesting). Also include the projected outcomes of each possible path you can take - what is likely to happen in each case?</p><p></p><p>You might think you don't need to do this, it's all safely locked in your head. But it's amazing how it can help. It's even more effective than using someone as a sounding board, it helps you have a different perspective on it all.</p><p></p><p>You deserve to be treated with respect. Living on your own with a difficult child can beat you down sometimes, which leaves you wide open to being brushed aside or dismissed by various experts you rely on for help. If you can make it clear that you are a vital part and equal member of your son's health care team and learning team, then you may find you get better treatment from them. You're allowed to not know all the answers; after all, they don't. But you are the spider in the web here, you're the one holding all the strings that lead to this expert or that expert, you're the one in contact with them all and with the most complete picture. Your responsibility in this is to inform them of the facts, in the detail they need and as effectively as possible. Maybe even keep a summary of it all, multiple copies, to hand out as needed. If they don't read it and still ask you stuff that they should already know, then tell them that they are wasting your time by not having done their homework and read the file. A doctor who keeps you waiting for hours - send them a bill for your time (don't expect payment). </p><p></p><p>We had a case like this in Australia, where an Aussie man began billing various people for wasting his time, including billing the bank for the amount of time he waited on the phone with musak playing interminably. It caused quite a furore but made the public far less tolerant in general and caused the banks and a lot of other organisations to lift their game and not treat people with such contempt.</p><p></p><p>A few things to bear in mind - you do need to be tolerant to a certain extent, especially with professionals you've not met before and who need to be brought up to speed. Also, the more specialised an expert is, the more chance there is they will be unpleasant and patronising, and because the more specialised the more scarce, the more you will have to tolerate this and be patient. However, over time as you 'cultivate' this person, you can groom them to your standards and make it clear what you want from the relationship especially as it concerns your child's care.</p><p></p><p>Good luck and I wish you some comfortable steel-capped boots for standing around waiting when you need to, and for kicking arse when you need to.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 225402, member: 1991"] A thought from Down Under - while I cant help with the specifics of who to talk to, how, and what options you have, I do have some ideas for you. 1) You've already done so much, don't see your current situation as a failure. Every battle successfully navigated is a success. Even if you feel you're fighting a repeat version of that battle again later - you still got through it before, this is a new battle. Try to mentally tick off each battle as an achievement. If you get a similar battle to fight, remember that you have previous experience, and use your superior knowledge to your advantage. 2) When dealing with people who treat you like dirt, or who are slack about how they do their job, call them on it. Be polite, but firm. Point out that you ARE an expert at parenting your child and that you did not come down in the last shower. If necessary, make a list and explain to the doctor, "You're saying X about my child. You are not the first. But X has also been thoroughly discredited before, undoubtedly will be again. Will you work with me on this to save both time and effort, on both your behalf and mine? Let's cut to the chase here." Never forget that you are entitled to be treated with respect and on an equal footing as an expert in your child's case. All you are doing when you consult doctors, is using them as a carpenter would use a saw or a plane, to do a job he can't do with his bare hands. A carpenter COULD just break a piece of timber at roughly the length he wants it, but it would be rough, it wouldn't be quite the right length and it would need a lot of tidying up before he could use that length of timber to make a bookcase. SO he uses a measure, a pencil and a saw to get the length of timber just right. In the same way, you consult an expert to advise you, within that expert's knowledge, on things that you might have a broad idea of but need expert guidance. In that area, the expert can be relied on. But only in that area. You take the information (and any help) and add it to your mental data banks. So armed with that attitude, you should be able to get the message across that you aren't the average single parent, able to be browbeaten and bullied into not questioning too closely or insisting on appropriate treatment. Always remember - the squeaky wheel gets the oil. If you must, be a nuisance and keep asking for specific help. Make a shopping list of what you want (or ask the experts to give you a list of what is available to you) then ask them to help you get it. Ask for information on the steps you have to follow and take notes. Log your notes into the computer and keep your files up to date. If nothing else, one day you will be able to write a book (exposing the problems?) 3) Now you've doe a great deal, covered a lot of ground but still feel like you're running a Red Queen's Race, it's time to consolidate your knowledge and experience. So you sit down with a big piece of paper and go over everything that has been done. Do it as a mind map if you can, because chances are your experiences can't just be written down as a simple list. Now do another mind map - this one is based on where you are at now, and all the options open to you. Include the ridiculous ones if you like; sometimes they're not so ridiculous, or sometimes they can lead to ones which are definitely "out there" but also likely to have an impact. In your lists/maps, discuss the PMI of each option (PMI stands for Positive, Minus, Interesting). Also include the projected outcomes of each possible path you can take - what is likely to happen in each case? You might think you don't need to do this, it's all safely locked in your head. But it's amazing how it can help. It's even more effective than using someone as a sounding board, it helps you have a different perspective on it all. You deserve to be treated with respect. Living on your own with a difficult child can beat you down sometimes, which leaves you wide open to being brushed aside or dismissed by various experts you rely on for help. If you can make it clear that you are a vital part and equal member of your son's health care team and learning team, then you may find you get better treatment from them. You're allowed to not know all the answers; after all, they don't. But you are the spider in the web here, you're the one holding all the strings that lead to this expert or that expert, you're the one in contact with them all and with the most complete picture. Your responsibility in this is to inform them of the facts, in the detail they need and as effectively as possible. Maybe even keep a summary of it all, multiple copies, to hand out as needed. If they don't read it and still ask you stuff that they should already know, then tell them that they are wasting your time by not having done their homework and read the file. A doctor who keeps you waiting for hours - send them a bill for your time (don't expect payment). We had a case like this in Australia, where an Aussie man began billing various people for wasting his time, including billing the bank for the amount of time he waited on the phone with musak playing interminably. It caused quite a furore but made the public far less tolerant in general and caused the banks and a lot of other organisations to lift their game and not treat people with such contempt. A few things to bear in mind - you do need to be tolerant to a certain extent, especially with professionals you've not met before and who need to be brought up to speed. Also, the more specialised an expert is, the more chance there is they will be unpleasant and patronising, and because the more specialised the more scarce, the more you will have to tolerate this and be patient. However, over time as you 'cultivate' this person, you can groom them to your standards and make it clear what you want from the relationship especially as it concerns your child's care. Good luck and I wish you some comfortable steel-capped boots for standing around waiting when you need to, and for kicking arse when you need to. Marg [/QUOTE]
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