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<blockquote data-quote="Marguerite" data-source="post: 291246" data-attributes="member: 1991"><p>Welcome out of the dark...</p><p></p><p>You asked some questions.</p><p></p><p>1) Yes, organise the neuropsychologist. You need someone to really take a good look at her. But you also need her on side with this, to make it easier for everyone. Also to make it easier - get copies of all past tests, as much detail as you can. Don't worry if the tests are out of date or contradictory - so much the better. With the past tests like WISC etc, you need the sub-scores especially. These tests have separate sections and each one has its own score, between 0 and 20 (although either 0 or 20 is unrealistic and frankly, useless). For a "normal" person, most of these sub-scores should be only two or three points apart. Where you have wider discrepancies, more than 6 or 7 points apart, you have clear indication NOT of someone who is faking being smarter in some areas, but someone who is having trouble in some areas and who desperately need help. The higher score areas indicate the person's true abilities, where the other scores SHOULD be. A wide range often indicates someone who is smarter than te test average indicates and who is being held back in some areas; such a person is often frustrated with themselves, has poor self-esteem, often has a lot of issues with anger, raging and discipline. Taking this along with the other things you report, especially the sensory stuff, and I do strongly feel Pervasive Developmental Disorder (PDD) needs to be looked at. Not autism full-on (no history of language delay), but maybe Asperger's or Pervasive Developmental Disorder (PDD)-not otherwise specified. Also what a lot of therapists are still learning - Asperger's presents differently in girls. It can be very difficult to pin down especially the brighter the child. Because a brighter child is more capable of learning how to blend in and adapt. Adaptation is what we all do as we learn to grow up and develop our social skills as well as learn how to just plain live in the world. We learn what sells.</p><p></p><p>Past testing also shows the pattern of what was measured on the day. her degree of cooperation (or not) is also highly revelant. A lot of testing depends on the tester and how rigid (or not) they are, as well as the person being tested. School testing is useful as a starting point and if you're lucky, they do a good enough job to not need anything further. But too often the schools do a perfunctory job and analyse it badly. difficult child 1 was assessed by his school counsellor when he was 6. He was anxious, fidgetty and was unable to complete the test (but it was scored as if he had - crazy!). The school counsellor said that his score was very low, it put him in the mild mental retardation range. However, he was actually achieving in te top quarter of his grade - how could this be? They had to attack me (there was political stuff at the time making me a target for the school counsellor) so the analysis was NOT that the testing was an underestimate, but that difficult child 1 was achieving higher than his capability because I was "pressure-cooking" him. What they didn't recognise - NO child can achieve better than their capability. If you can achieve it, then you are capable of achieving it. </p><p></p><p>A more common finding, even in a child who scores well, is a child who is under-achieving. If the testing is also an underestimate, then you risk not recognising a child who is underachieving because they are gifted but learning disabled. Some people might not think it's a problem if the child is still doing OK, but that won't last. </p><p></p><p>The issue with education access - every child deserves the chance to not only achieve, but to be able to achieve to the best of their ability. If your child is doing OK but acutally has the capability to do brilliantly, if only... then the school still has a responsibility to step in and make that possible, if there is something they could do to help the child over a learning difficulty.</p><p></p><p>For example - a child may have problems with handwriting, it causes a lot of pain because of perhaps a broken bone. The child has been doing well before this but there is an exam coming up. The child has already done well enoguh throughthe year to pass well, but is it fair to deny that child access to a scribe, or some other way of assessment other than handwriting, in order to fully demonstrate his/her capabilities? To just leave the child to struggle and therefore not be able to demonstrate his/her capabilities in that final exam, is to not do justice either to that child or to the rest of the class. Imagine how it would feel both to the child who missed out on first place due to an unfair exam conditions, as well as the child who DOES score first but knows it should have gone to the smarter student.</p><p></p><p>You say she's doing OK socially - that's really good. But will this last, and is it as good as she should be doing? At her age it's easier to slide through. difficult child 1 had great friends at this age. As he got older though, it became more obvious that he was a bit weird and his friendship base changed to the outcasts.</p><p>easy child 2/difficult child 2 at times went a bit off the rails with friends, she tended to side with the underdogs which sometimes meant she was associating with the real misfits. Some kids are underdogs for a reason and easy child got into a bit of strife at times by hanging out with girls she actually didn't like much but felt sorry for.</p><p>Later in high school she was popular and is still in touch with old school friends. However, we are convinced she is Aspie. It's not just about having friends - your daughter's friends sound very understanding of her, but her behaviour IS socially outside the norm. And that is an important factor here.</p><p></p><p>Now to your daughter's refusal and tantrumming. I agree, she sounds very anxious and is having difficulty also with frustration and self-esteem. As you're already reading Ross Greene (I presume, Explosive Child?) then you probably already see that she needs to feel in control. Often we as parents see our role as to assert control, that if w give control to our children then we are abdicating our own position. But that is not necessarily so - our role is to guide our children, not to drag them. A strong-willed child can be taught to use that will for self-discipline and self-control, rather than using it to fight us trying to control her (or him). And since our ultimate goal as parents is for our children to be happy and independent, we can use this to short-cut that part of the process.</p><p></p><p>I can't do this for you, all I can do is tell you what has worked for us. We keep difficult child 3 feeling like he has a say, we keep him involved in the process. If he has to see a doctor we explain why and ifhe refuses we ask him for his input into another way. For example, difficult child 3 had a bad cold with fever and sore troat. I said, "We need tosee the doctor." </p><p>difficult child 3 said, "I'm too sick to see a doctor."</p><p>I said, "it is when you are this sick, that a doctor can help make you well faster. A doctor can tell us what to do to make you feel better and can also check to make sure it's not something nastier that could get worse if we just leave it."</p><p>difficult child 3 said, "I'm too sick to get dressed, I just want to go to bed."</p><p>We didn't have the option of a house call so I said, "That's OK, just put this rob on, it wraps around you like a blanket. And pull your ugg boots on, they will keep your legs warm and comfortable. You can lie down in the doctor's rooms."</p><p></p><p>So he went, and lay down on the doctor's couch. The doctor came out and saw him, did her prod and poke, checked the bits she could get to. She wrote a prescription for antibiotics (luckily difficult child 3 is OK with medications) and told us to keep him hydrated and dosed with antipyretics.</p><p></p><p>Another time - difficult child 3 didn't want to see the doctor but long experience of knowing that HE gets to tell the doctor what is wrong 9which gives him control) and I will only speak up to keep him on topic or to add anything I feel he may have left out - he was OK with it. Until the doctor said, "I want blood tests."</p><p>"Whao! Wait a minute!" difficult child 3 is not good with blood tests. He had a ganglion surgery a few years ago and needed blood cross-match before the surgery. We walked in off the street for the bood test, I quietly warned the technician of difficult child 3's anxiety but she blustered through it and it was a disaster, difficult child 3 was cooperating but his body couldn't cope, the adrenalin washing thorugh his body shut down his peripheral vascular system and the technician couldn't get blood out of him. Not without half an hour of trying this and that and finally coaching him to breathe slowly, so that with each breath out, we got another few drops.</p><p>SO when the GP ordered blood tests we talked about it. "We need to know wat your body is doing," I said. The informaiton will be important, it will tell the doctor a lot of useful stuff and make it easier to make you better faster. What scares you?"</p><p>"I'm scared of it hurting again. I'm scared of fainting again. I'm scared of vomitting again."</p><p>All genuine fears.</p><p>So I said, "What if it doesn't hurt this time? What if we can guarantee it?"</p><p>So we went to buy emla cream and I put it on him. He complained that the tape hurt, that it dug in. I told him that it was still going to be OK, it wouldn't be for long and the end result would be worth it (privately, I hope so). We waited as long as we could, difficult child 3 whingeing about the tape being uncomfortable and he kept prodding at it to see when he would stop feeling the prod. Finally we'd waited long enough (hopefully) and we went in to the pathologist's. I quickly explained (again, without difficult child 3 hearing) and they were wonderful. They let him lie down "because that way the blood collects more easily."</p><p>It went off without a hitch and difficult child 3 was sold on emla.</p><p></p><p>Next time the doctor wanted bloods, he reached for the emla. But we didn't have time for it to work properly, so he felt the pinprick of the needle. However, he hadn't had time to panic so there was no problem with the blood flow and after that brief pinprick there was no problem.</p><p></p><p>Next time bloods were ordered difficult child 3 was debating - will we use emla or not? He kept insisting he wanted emla (which would have meant I had to buy another packet) and he also had to have at least a day to prepare himself for the tests (he's increasingly needing more time to prepare himself for change). And of course all this time he's used every opportunity to watch me have blood drawn as well as an injections I've needed (for a while I was needing gentamycin shots in the rear end - yes, I let him watch those too). He said "I need to harden my heart" to seeing needles.</p><p></p><p>In the end, difficult child 3 decided to have the blood draw without emla. Same pathology firm but by this time they let him sit up for it and they really are good - it was over in asplit second and although there was an initial 'ouch' he smiled because there were no problems and we were out of there in minutes. It's taken us a couple of years of this, but he is now mostly over his needle phobia. He knows he has control, he knows there are options to make it easier if he needs to.</p><p></p><p>It can be tedious, it sometimes seem we're pandering to his foolishness or his whims. The thing is - for a kid like this, if we hadn't done this then every blood test, every medical examination would be a screaming match with a terrified, panicked kid getting increasingly difficult to hold down. In my view, the end result is the important thing. If some people are critical of how we've "pandered to this spoilt brat" then I don't give a rat's. All I care about is the NOW - we have a kid who can now handle blood tests without puking, fainting or having to be held down by four people.</p><p></p><p>The battle seems daunting, but when you get a result like the one I described - it makes it worth all that effort.</p><p></p><p>You are doing the right thing pushing for more informaiton and support now. I suggest you talk to her about how she feels about herself and how you DON'T want to turn her into a perfect being, just into someone who is happy with herself and what she can do. You love her and want the best for her, but at the moment there seem to be obstacles in how things work for her, and you want to help make those obstacles go away. But first those obstacles have to be found, recognised and then measured. All the doctors, all the tdocs, all these people are there as tools to help HER to find how she herself can be the best she can be, AS HERSELF. </p><p>If you wanted her hair colour changed, you'd buy a bottle of hair dye. If you wanted her eye colour changed, you'd buy her coloured contact lenses. If you wanted her nose changed, you'd get her to a plastic surgeon. But you're nnot doing any of that because you love her. But you know she is not happy and that makes you sad because you love her.</p><p>Getting her help is a team effort. There is help out there. In the past you've had some duds by the sound of it. Feel free to agree with her (if you do) when she is critical of past efforts. This is about her and she needs to have some say in this, but I think you need to push as hard as you can because the alternative is unthinkable. Ask her how she thinks things will go, if you fail to get her assessed and supported.</p><p>Include in this scenario, the fact that as she moves into higher grades the work is going to get more subtle, more complex and she may suddenly hit an acedmic brick wall especially in some subjecgs. No matter how bright she is, this happens to some kids because of an underlying and undiagnosed condition. But when support is in place this can be dealt with by finding another way around the problems (which is exactly where we are now with difficult child 3). </p><p></p><p>Also let her know (if this is part of her fear) that at least some of the options you're looking at ARE NOT that she is nuts, or has a psychiatric problem. But they do need to be considered and ruled out (or in if that is appropriate, but don't tell her that yet if it's an issue for her). Pervasive Developmental Disorder (PDD) for example is more a neurological condition and not psychological. ADHD also. Even some other conditions like bipolar are often a chemical imbalance rather than primarily psychiatric in origin.</p><p></p><p>Let her express her fears so you can help her face them, explore the absolute worst case scenarios and help her see that life will continue past them and if help is available, such problems can be overcome.</p><p></p><p>Fear can be crippling. Fear ignored or denied even more so. Fears faced and overcome are empowering.</p><p></p><p>Get your husband to lurk here and post here too if you can. It did wonders for me and my husband because it helps him get a glimpse inside what is worrying me about the kids and we can then tal about it more. Even tough we were already talking about it, having him see what I wasputting in writing made it easeir because what we write is more distilled, more concentrated and sometimes easier to get the point across. He is now a member of this site in his own right.</p><p></p><p>With appointmens coming up, give her time to get used to the idea and ask her what is worrying her about them. Try to help her face her fears and where possible, find ways to reduce the need for anxiety. </p><p></p><p>Also where all else fails - I use bribes. The professionals call it "postive reinforcement" - we follow a doctor's appointment with a stopover at difficult child 3's favourite fast food place sometimes, or perhaps the mall. </p><p></p><p>Everything helps.</p><p></p><p>Letus know how you get on.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 291246, member: 1991"] Welcome out of the dark... You asked some questions. 1) Yes, organise the neuropsychologist. You need someone to really take a good look at her. But you also need her on side with this, to make it easier for everyone. Also to make it easier - get copies of all past tests, as much detail as you can. Don't worry if the tests are out of date or contradictory - so much the better. With the past tests like WISC etc, you need the sub-scores especially. These tests have separate sections and each one has its own score, between 0 and 20 (although either 0 or 20 is unrealistic and frankly, useless). For a "normal" person, most of these sub-scores should be only two or three points apart. Where you have wider discrepancies, more than 6 or 7 points apart, you have clear indication NOT of someone who is faking being smarter in some areas, but someone who is having trouble in some areas and who desperately need help. The higher score areas indicate the person's true abilities, where the other scores SHOULD be. A wide range often indicates someone who is smarter than te test average indicates and who is being held back in some areas; such a person is often frustrated with themselves, has poor self-esteem, often has a lot of issues with anger, raging and discipline. Taking this along with the other things you report, especially the sensory stuff, and I do strongly feel Pervasive Developmental Disorder (PDD) needs to be looked at. Not autism full-on (no history of language delay), but maybe Asperger's or Pervasive Developmental Disorder (PDD)-not otherwise specified. Also what a lot of therapists are still learning - Asperger's presents differently in girls. It can be very difficult to pin down especially the brighter the child. Because a brighter child is more capable of learning how to blend in and adapt. Adaptation is what we all do as we learn to grow up and develop our social skills as well as learn how to just plain live in the world. We learn what sells. Past testing also shows the pattern of what was measured on the day. her degree of cooperation (or not) is also highly revelant. A lot of testing depends on the tester and how rigid (or not) they are, as well as the person being tested. School testing is useful as a starting point and if you're lucky, they do a good enough job to not need anything further. But too often the schools do a perfunctory job and analyse it badly. difficult child 1 was assessed by his school counsellor when he was 6. He was anxious, fidgetty and was unable to complete the test (but it was scored as if he had - crazy!). The school counsellor said that his score was very low, it put him in the mild mental retardation range. However, he was actually achieving in te top quarter of his grade - how could this be? They had to attack me (there was political stuff at the time making me a target for the school counsellor) so the analysis was NOT that the testing was an underestimate, but that difficult child 1 was achieving higher than his capability because I was "pressure-cooking" him. What they didn't recognise - NO child can achieve better than their capability. If you can achieve it, then you are capable of achieving it. A more common finding, even in a child who scores well, is a child who is under-achieving. If the testing is also an underestimate, then you risk not recognising a child who is underachieving because they are gifted but learning disabled. Some people might not think it's a problem if the child is still doing OK, but that won't last. The issue with education access - every child deserves the chance to not only achieve, but to be able to achieve to the best of their ability. If your child is doing OK but acutally has the capability to do brilliantly, if only... then the school still has a responsibility to step in and make that possible, if there is something they could do to help the child over a learning difficulty. For example - a child may have problems with handwriting, it causes a lot of pain because of perhaps a broken bone. The child has been doing well before this but there is an exam coming up. The child has already done well enoguh throughthe year to pass well, but is it fair to deny that child access to a scribe, or some other way of assessment other than handwriting, in order to fully demonstrate his/her capabilities? To just leave the child to struggle and therefore not be able to demonstrate his/her capabilities in that final exam, is to not do justice either to that child or to the rest of the class. Imagine how it would feel both to the child who missed out on first place due to an unfair exam conditions, as well as the child who DOES score first but knows it should have gone to the smarter student. You say she's doing OK socially - that's really good. But will this last, and is it as good as she should be doing? At her age it's easier to slide through. difficult child 1 had great friends at this age. As he got older though, it became more obvious that he was a bit weird and his friendship base changed to the outcasts. easy child 2/difficult child 2 at times went a bit off the rails with friends, she tended to side with the underdogs which sometimes meant she was associating with the real misfits. Some kids are underdogs for a reason and easy child got into a bit of strife at times by hanging out with girls she actually didn't like much but felt sorry for. Later in high school she was popular and is still in touch with old school friends. However, we are convinced she is Aspie. It's not just about having friends - your daughter's friends sound very understanding of her, but her behaviour IS socially outside the norm. And that is an important factor here. Now to your daughter's refusal and tantrumming. I agree, she sounds very anxious and is having difficulty also with frustration and self-esteem. As you're already reading Ross Greene (I presume, Explosive Child?) then you probably already see that she needs to feel in control. Often we as parents see our role as to assert control, that if w give control to our children then we are abdicating our own position. But that is not necessarily so - our role is to guide our children, not to drag them. A strong-willed child can be taught to use that will for self-discipline and self-control, rather than using it to fight us trying to control her (or him). And since our ultimate goal as parents is for our children to be happy and independent, we can use this to short-cut that part of the process. I can't do this for you, all I can do is tell you what has worked for us. We keep difficult child 3 feeling like he has a say, we keep him involved in the process. If he has to see a doctor we explain why and ifhe refuses we ask him for his input into another way. For example, difficult child 3 had a bad cold with fever and sore troat. I said, "We need tosee the doctor." difficult child 3 said, "I'm too sick to see a doctor." I said, "it is when you are this sick, that a doctor can help make you well faster. A doctor can tell us what to do to make you feel better and can also check to make sure it's not something nastier that could get worse if we just leave it." difficult child 3 said, "I'm too sick to get dressed, I just want to go to bed." We didn't have the option of a house call so I said, "That's OK, just put this rob on, it wraps around you like a blanket. And pull your ugg boots on, they will keep your legs warm and comfortable. You can lie down in the doctor's rooms." So he went, and lay down on the doctor's couch. The doctor came out and saw him, did her prod and poke, checked the bits she could get to. She wrote a prescription for antibiotics (luckily difficult child 3 is OK with medications) and told us to keep him hydrated and dosed with antipyretics. Another time - difficult child 3 didn't want to see the doctor but long experience of knowing that HE gets to tell the doctor what is wrong 9which gives him control) and I will only speak up to keep him on topic or to add anything I feel he may have left out - he was OK with it. Until the doctor said, "I want blood tests." "Whao! Wait a minute!" difficult child 3 is not good with blood tests. He had a ganglion surgery a few years ago and needed blood cross-match before the surgery. We walked in off the street for the bood test, I quietly warned the technician of difficult child 3's anxiety but she blustered through it and it was a disaster, difficult child 3 was cooperating but his body couldn't cope, the adrenalin washing thorugh his body shut down his peripheral vascular system and the technician couldn't get blood out of him. Not without half an hour of trying this and that and finally coaching him to breathe slowly, so that with each breath out, we got another few drops. SO when the GP ordered blood tests we talked about it. "We need to know wat your body is doing," I said. The informaiton will be important, it will tell the doctor a lot of useful stuff and make it easier to make you better faster. What scares you?" "I'm scared of it hurting again. I'm scared of fainting again. I'm scared of vomitting again." All genuine fears. So I said, "What if it doesn't hurt this time? What if we can guarantee it?" So we went to buy emla cream and I put it on him. He complained that the tape hurt, that it dug in. I told him that it was still going to be OK, it wouldn't be for long and the end result would be worth it (privately, I hope so). We waited as long as we could, difficult child 3 whingeing about the tape being uncomfortable and he kept prodding at it to see when he would stop feeling the prod. Finally we'd waited long enough (hopefully) and we went in to the pathologist's. I quickly explained (again, without difficult child 3 hearing) and they were wonderful. They let him lie down "because that way the blood collects more easily." It went off without a hitch and difficult child 3 was sold on emla. Next time the doctor wanted bloods, he reached for the emla. But we didn't have time for it to work properly, so he felt the pinprick of the needle. However, he hadn't had time to panic so there was no problem with the blood flow and after that brief pinprick there was no problem. Next time bloods were ordered difficult child 3 was debating - will we use emla or not? He kept insisting he wanted emla (which would have meant I had to buy another packet) and he also had to have at least a day to prepare himself for the tests (he's increasingly needing more time to prepare himself for change). And of course all this time he's used every opportunity to watch me have blood drawn as well as an injections I've needed (for a while I was needing gentamycin shots in the rear end - yes, I let him watch those too). He said "I need to harden my heart" to seeing needles. In the end, difficult child 3 decided to have the blood draw without emla. Same pathology firm but by this time they let him sit up for it and they really are good - it was over in asplit second and although there was an initial 'ouch' he smiled because there were no problems and we were out of there in minutes. It's taken us a couple of years of this, but he is now mostly over his needle phobia. He knows he has control, he knows there are options to make it easier if he needs to. It can be tedious, it sometimes seem we're pandering to his foolishness or his whims. The thing is - for a kid like this, if we hadn't done this then every blood test, every medical examination would be a screaming match with a terrified, panicked kid getting increasingly difficult to hold down. In my view, the end result is the important thing. If some people are critical of how we've "pandered to this spoilt brat" then I don't give a rat's. All I care about is the NOW - we have a kid who can now handle blood tests without puking, fainting or having to be held down by four people. The battle seems daunting, but when you get a result like the one I described - it makes it worth all that effort. You are doing the right thing pushing for more informaiton and support now. I suggest you talk to her about how she feels about herself and how you DON'T want to turn her into a perfect being, just into someone who is happy with herself and what she can do. You love her and want the best for her, but at the moment there seem to be obstacles in how things work for her, and you want to help make those obstacles go away. But first those obstacles have to be found, recognised and then measured. All the doctors, all the tdocs, all these people are there as tools to help HER to find how she herself can be the best she can be, AS HERSELF. If you wanted her hair colour changed, you'd buy a bottle of hair dye. If you wanted her eye colour changed, you'd buy her coloured contact lenses. If you wanted her nose changed, you'd get her to a plastic surgeon. But you're nnot doing any of that because you love her. But you know she is not happy and that makes you sad because you love her. Getting her help is a team effort. There is help out there. In the past you've had some duds by the sound of it. Feel free to agree with her (if you do) when she is critical of past efforts. This is about her and she needs to have some say in this, but I think you need to push as hard as you can because the alternative is unthinkable. Ask her how she thinks things will go, if you fail to get her assessed and supported. Include in this scenario, the fact that as she moves into higher grades the work is going to get more subtle, more complex and she may suddenly hit an acedmic brick wall especially in some subjecgs. No matter how bright she is, this happens to some kids because of an underlying and undiagnosed condition. But when support is in place this can be dealt with by finding another way around the problems (which is exactly where we are now with difficult child 3). Also let her know (if this is part of her fear) that at least some of the options you're looking at ARE NOT that she is nuts, or has a psychiatric problem. But they do need to be considered and ruled out (or in if that is appropriate, but don't tell her that yet if it's an issue for her). Pervasive Developmental Disorder (PDD) for example is more a neurological condition and not psychological. ADHD also. Even some other conditions like bipolar are often a chemical imbalance rather than primarily psychiatric in origin. Let her express her fears so you can help her face them, explore the absolute worst case scenarios and help her see that life will continue past them and if help is available, such problems can be overcome. Fear can be crippling. Fear ignored or denied even more so. Fears faced and overcome are empowering. Get your husband to lurk here and post here too if you can. It did wonders for me and my husband because it helps him get a glimpse inside what is worrying me about the kids and we can then tal about it more. Even tough we were already talking about it, having him see what I wasputting in writing made it easeir because what we write is more distilled, more concentrated and sometimes easier to get the point across. He is now a member of this site in his own right. With appointmens coming up, give her time to get used to the idea and ask her what is worrying her about them. Try to help her face her fears and where possible, find ways to reduce the need for anxiety. Also where all else fails - I use bribes. The professionals call it "postive reinforcement" - we follow a doctor's appointment with a stopover at difficult child 3's favourite fast food place sometimes, or perhaps the mall. Everything helps. Letus know how you get on. Marg [/QUOTE]
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