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i'm really confused now...the teacher called
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<blockquote data-quote="Marguerite" data-source="post: 122764" data-attributes="member: 1991"><p>Jen, our medical system is different here, but since you seem as desperate as I was to get some answers, I'll share with you...</p><p></p><p>I rang every doctor I was referred to for difficult child 3 (mostly - the others too). With difficult child 1, I'd simply taken the first referral, seen that bloke and stayed put (with no information from anywhere else) until we had to move on (the guy was a nutter). we had a SEQUENTIAL approach to diagnosis & management. As a result, I missed out on being given some very practical advice, because we really were only exposed to a narrow point of view.</p><p></p><p>With difficult child 3, I felt his problems were worse and I wanted answers fast, from wherever I could get them. With long waiting times, I simply made appointments and waited. Whoever came up first got the gig - but I didn't cancel the other appointments until AFTER the consult, in case we struck a dud. Which we did, a few times. I was looking for answers as well as someone prepared to manage my kids. A number of doctors saw the kids but gave no advice or diagnosis. Another saw the kids but was too far away to take them on; plus his books were full. The name he referred us to was not currently in practice, so we had to find a new line of enquiry.</p><p></p><p>All along the way, we were gathering information and getting closer to answers, like triangulation using satellite tracking. </p><p></p><p>And another thing I was learning - labels are often inexact. easy child 2/difficult child 2 still does not have an appropriate label, in my view. But we have a good idea of her issues, and how to manage them. A lot of what we have learned, we've taught ourselves. Expert support is an adjunct, not the be-all-and-end-all. I expected a diagnosis to answer all our questions. Even the doctors gave us this impression - "Now I've told you that difficult child 3 is autistic, doors will open. You will now have all the support and intervention for him that you need, the Autism Association will see to that." </p><p>In reality, the Autism Association were a struggling, under-funded and over-worked charity, with long waiting lists and too far away from us to be much help.</p><p></p><p>What I learned from all our enquiries - take what info we can get and be grateful. Don't let things lie, but always ask questions, keep checking the 'fit' of the label and challenge it if necessary (in the same way you 'challenge' a possible allergy to make sure you haven't made a mistake). But the biggest thing - trust your own instincts as a parent. If you try what the experts advise, and it' a total disaster, and you're fairly sure your own methods will work better, then trust yourself.</p><p></p><p>Keep good records. Back them up. Scan all reports so you don't lose any. Never hand over originals with the expectation that the doctor will copy them and give the originals back. Become darn good at keeping your files in order.</p><p>Write down any interesting things that happen. You may think you will remember, but you won't. And once you free your mind from having to hold all that information, you will reduce your stress.</p><p></p><p>And last - don't feel guilty in the slightest for being so determined to find out stuff, and for wanting to get the best help you can for your child. Go ahead. Take what you need. She's your child, you need to do this. Put guilt aside and go for it.</p><p></p><p>And remember, if you get the answers you need from Dr A, and you feel guilty and cancelling doctors B, C & D - remember that the minute you cancel, that receptionist is on the phone to the names on her "please call if there's a cancellation" list, and offering them the miracle they've been waiting for.</p><p></p><p>Don't feel guilty about that, either.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 122764, member: 1991"] Jen, our medical system is different here, but since you seem as desperate as I was to get some answers, I'll share with you... I rang every doctor I was referred to for difficult child 3 (mostly - the others too). With difficult child 1, I'd simply taken the first referral, seen that bloke and stayed put (with no information from anywhere else) until we had to move on (the guy was a nutter). we had a SEQUENTIAL approach to diagnosis & management. As a result, I missed out on being given some very practical advice, because we really were only exposed to a narrow point of view. With difficult child 3, I felt his problems were worse and I wanted answers fast, from wherever I could get them. With long waiting times, I simply made appointments and waited. Whoever came up first got the gig - but I didn't cancel the other appointments until AFTER the consult, in case we struck a dud. Which we did, a few times. I was looking for answers as well as someone prepared to manage my kids. A number of doctors saw the kids but gave no advice or diagnosis. Another saw the kids but was too far away to take them on; plus his books were full. The name he referred us to was not currently in practice, so we had to find a new line of enquiry. All along the way, we were gathering information and getting closer to answers, like triangulation using satellite tracking. And another thing I was learning - labels are often inexact. easy child 2/difficult child 2 still does not have an appropriate label, in my view. But we have a good idea of her issues, and how to manage them. A lot of what we have learned, we've taught ourselves. Expert support is an adjunct, not the be-all-and-end-all. I expected a diagnosis to answer all our questions. Even the doctors gave us this impression - "Now I've told you that difficult child 3 is autistic, doors will open. You will now have all the support and intervention for him that you need, the Autism Association will see to that." In reality, the Autism Association were a struggling, under-funded and over-worked charity, with long waiting lists and too far away from us to be much help. What I learned from all our enquiries - take what info we can get and be grateful. Don't let things lie, but always ask questions, keep checking the 'fit' of the label and challenge it if necessary (in the same way you 'challenge' a possible allergy to make sure you haven't made a mistake). But the biggest thing - trust your own instincts as a parent. If you try what the experts advise, and it' a total disaster, and you're fairly sure your own methods will work better, then trust yourself. Keep good records. Back them up. Scan all reports so you don't lose any. Never hand over originals with the expectation that the doctor will copy them and give the originals back. Become darn good at keeping your files in order. Write down any interesting things that happen. You may think you will remember, but you won't. And once you free your mind from having to hold all that information, you will reduce your stress. And last - don't feel guilty in the slightest for being so determined to find out stuff, and for wanting to get the best help you can for your child. Go ahead. Take what you need. She's your child, you need to do this. Put guilt aside and go for it. And remember, if you get the answers you need from Dr A, and you feel guilty and cancelling doctors B, C & D - remember that the minute you cancel, that receptionist is on the phone to the names on her "please call if there's a cancellation" list, and offering them the miracle they've been waiting for. Don't feel guilty about that, either. Marg [/QUOTE]
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