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Diagnosed Pervasive Developmental Disorder (PDD)-not otherwise specified.. is it really ADHD/ODD
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<blockquote data-quote="Marguerite" data-source="post: 355766" data-attributes="member: 1991"><p>Pervasive Developmental Disorder (PDD) is often used by doctors who are basically saying, "This kid is somewhere on the spectrum; I need more information from other specialists in order to pinpoint in more detail."</p><p></p><p>For example, difficult child 3 got a provisional diagnosis of Asperger's when really, the doctor should have said Pervasive Developmental Disorder (PDD). But further examination of reports form early speech pathology assessments confirmed it as autism. We had become used to what we felt was a 'lesser' diagnosis of Asperger's, and to be told no, he's actually really autistic, was a huge shock. Especially when at the same time the doctor pointed to difficult child 1 and said, "HE has Asperger's." and that easy child 2/difficult child 2 was borderline.</p><p></p><p>Now, all three of these kids of ours were also diagnosed with ADHD or ADD (in easy child 2/difficult child 2's case). For our kids, the ADD comes afterwards, it's an added diagnosis. Since then we've been told that ADD & ADHD actually are increasingly being considered as somewhere under the Pervasive Developmental Disorder (PDD) umbrella.</p><p></p><p>We were lucky with this - the medications for ADHD work on all three kids. It's not a perfect fix, but it made enough difference for us to be able to help each child a lot more.</p><p></p><p>OK, now to interventions - I hear your radar thinking, "Oh, good! There is some service or treatment I can plug my child into and it will fix him."</p><p></p><p>Sorry, nope. That is too simple. But that doesn't mean you can't work with your child to get spectacular results. But it comes down to YOU and YOUR CHILD. And WORK. It can also be rewarding, however. Really rewarding. It IS worth the effort.</p><p></p><p>I view my kids, even the adult ones, as works in progress. The adults are still 'cooking' but almost done. In reality, we continue to develop and grow as individuals, all our lives. I remember telephoning my parents often, just to talk and sometimes to ask their advice. I didn't always take their advice, but it was part of the spectrum of information I was gathering to help me make my own choices.</p><p></p><p>Back to what you can do - read "The Explosive Child". Look at the sticky at the top of this forum, it will give you some insight.</p><p></p><p>What I had to do and what I recommend - a change in your mindset towards your child. Stop thinking of your child as being like all toher children and therefore "he should be able to do X without problem". Also any thinking like "He shouldn't still be doing that at his age" also has to get thrown out. You WILL hear people close to you saying this. Do not let it get to you. Do not suddenly get angry with your child because he cannot sit still or cannot stop fidgetting, like the other children. He can't, not at the moment, and you insisting is likely to set him up for failure. But he WILL get there, it will just take longer. I can't tell you how long.</p><p></p><p>You will need Occupational Therapist (OT) be strong and become an advocate for your child. You need to stop being the authority figure and rule-giver, but instead become the facilitator and support for your child.</p><p></p><p>If your child really does have Pervasive Developmental Disorder (PDD) in any form, this is GOOD news. I remember when I was growing up and reading about autism - I was dreading the thought of such a ghastly and enigmatic condition. No way would I ever cope. I could have coped with a child who was blind or a child who was a paraplegic but I hoped I never would have to cope with a child with autism.</p><p></p><p>And I got three! (Well, tow and a half...)</p><p></p><p>But in the intervening time, I've learned a lot more about autism and I have discovered for myself, that it is perhaps the best such disability to wish for, if you have to have one of them.</p><p></p><p>if you want some good news on autism, read up on the writing of Tony Attwood. He does a lot of work with autism and especially Asperger's. We were shown an article by him which lsited the good qualities of someone with Asperger's. </p><p>They are:</p><p>1) loyal. REALLY loyal. The most loyal friend you could ever have, would walk over burning coals for you.</p><p></p><p>2) Loving. They don't always show love in ways you might recognise, but they feel it very intensely.</p><p></p><p>3) law-abiding. I caution here though - the laws they follow most are the ones they have worked out for themselves, as what really apply. So if they hear rules being laid down officially, then see people break those rules, that child will then modify the true meaning of the rule to be, "We are told X but people do Y. So Y is also permissible as long as we don't admit to it".</p><p></p><p>4) Truthful. Again here, a proviso - these kids CAN lie and ALL kids will try to lie to get out of trouble. But Pervasive Developmental Disorder (PDD) kids are so bad at lying, they tend to get caught out. They can't invent a complex alternate truth, not as a rule. Over time and with vigilance always calling them on it, they learn that it is easier to always tell the truth.</p><p></p><p>These last two often mean that a Pervasive Developmental Disorder (PDD) kid will be far less likely to break the rules simply because you're not looking. SO the usual "I have to be the parent and watch my kids like a hawk because I just know they're waiting for the opportunity to break out and run amok" doesn't generally apply to Pervasive Developmental Disorder (PDD) kids. If you have raised them consistently and have a good relationship with them, you will find the usual horrors of teenage years to be far less an issue for you and this child. This is not always the case, but you have a much greater chance of this being so for you and your Aspie child.</p><p></p><p>We have friends in the village whose son is undiagnosed but probably Aspie. He has a lot of other issues too, notably his friendship with the gangs in the town. They have manipulated him, abused his trust and because of his Aspie loyalty, he takes it and has even got a criminal record because he took the blame for someone else's crime. Even the victim of that crime testified it wasn't him, but because this kid had been hiding the weapon for the thug, this kid got the sentence. I think a lot of the problems with this kid, though, come form his own lack of acceptance that he has any sort of a problem. So a lot of it does come down to the attitudes they are exposed to, and how they accept themselves and their abilities/disabilities.</p><p></p><p>We got our own kids on side through a number of methods. First - difficult child 3 was the one with the worst problems and we really needed to focus on him mostly. difficult child 1 was 14 when diagnosed, we did what we could and what we did for difficult child 3 tended to flow on to difficult child 1.</p><p></p><p>difficult child 3 is a computer 'nut'. Always was. He's absolutely amazing. But he was slow to talk, he needed to read first in order to really learn communication. At school he rapidly learned how to use the computers and the teacher would often use him (in Kindergarten) to trouble-shoot computer problems. In turn he would fiddle with settings until he was threatened with being banned. He learned how to bypass our own home password protection when he was 2 years old. Again, he was threatened with being banned if he did it again.</p><p></p><p>So we explained about autism in computer terms. We said to him, "When you get a text file off the printer, all formatted and paragraphed, you cannot tell if it was created on a Mac or a easy child. It can be made to look the same. But the software needed to give each type of computer the instructions on how to do this job, will be very different, for a Mac compared to a easy child. Our brains are similar - some people have Mac brains and some people have easy child brains. it is our job to find the correct software each brain needs, in order to learn best."</p><p></p><p>No value judgements, no identification as to which type of computer his brain was like. No good or bad. It just IS.</p><p></p><p>Because difficult child 3 was reading so much, we would put these things in writing for him and fold them small so he could keep them in his pocket. Any lesson he needed to learn in terms of social skills, we did the same thing. "Throwing stones can hurt people. We don't want to hurt people. So we don't throw stones. If we want to watch things falling, we blow bubbles instead."</p><p></p><p>We maintained a communication book that travelled in his bag between home and school. In it we would write anything of importance tat could help his teacher. In return she wrote of any incident (good or bad) so we always had immediate information. This often helped us identify problems faster.</p><p></p><p>We watched and got help form the relevant therapist when a problem was identified. Eachchild is different so you need to watch and think - you will need to have your wits about you.</p><p></p><p>For example - difficult child 3 would wander, and didn't seem to understand about names so he wouldn't respond when called. We could be searching for him up and down the street, only to find him hidden under the dining table.</p><p></p><p>So we put in a front fence he couldn't get out of.</p><p></p><p>Wr got him help for his language delay - speech pathology. Sometimes the advice we were given was unworkable or seemed to not make sense (such as "Don't let him read" - like, how could we stop him?) but generally we got good stuff. He had problems with hypermobile joints (watch for this one - it seems to go hand in hand with high-functioning autism, I don't know why but there is a high correlation). This meant his hands hurt when he has to use a pen for long periods. He also has problems using cutlery. He has to learn to put up with some pain but also find other ways around the problem. You can get finger splints but we've gone down the route of letting him type his answers to schoolwork. But for some years, he would be very resistant to written schoolwork and he got punished for it. Not good.</p><p></p><p>YOu watch your own child, you strengthen his strengths and use these strengths to help him with his low achievement areas. Anything requiring social skills will need active intervention BY YOU to help him learn and understand. Somme of it will need more time. For example, difficult child 3's Grade 9 English teacher clearly felt she understood autism, but to me clearly did not. She would say to me, "He's clearly very bright, his vocabulary is at university level (the "little professor" syndrome, this is often called) so he should be able to answer my questions. But questions such as, "In this text, what did Joe believe John knew?"</p><p>This is classic theory of mind stuff and at that time, difficult child 3 just couldn't manage it. He is better at it now, but we gave him a year off English and he is now completing his education at half rate (an option we have here). He should be now in Grade 11, but last year he only did half of Grade 10, the scientific half. He now has to do English and other humanities subjects. The year off has given his brain an extra year to mature. he still needs a lot of help from me (he's a correspondence student) and have his work modified so his ability to understand is considered. THis is a kid who has been doing senior high school Chemistry for some years now, whose grasp of spelling, grammar and vocabulary are amazing. But his ability to analyse a text is still not great. With help he can get there. </p><p></p><p>But you can't expect therapists to do all this. It doesn't come in a pill. Such things can help and should never be neglected, but the greatest work comes from the child himself. Next, the parents. And if all the efforts are coordinated (this includes working with the child, not against the child) then you WILL see amazing results.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 355766, member: 1991"] Pervasive Developmental Disorder (PDD) is often used by doctors who are basically saying, "This kid is somewhere on the spectrum; I need more information from other specialists in order to pinpoint in more detail." For example, difficult child 3 got a provisional diagnosis of Asperger's when really, the doctor should have said Pervasive Developmental Disorder (PDD). But further examination of reports form early speech pathology assessments confirmed it as autism. We had become used to what we felt was a 'lesser' diagnosis of Asperger's, and to be told no, he's actually really autistic, was a huge shock. Especially when at the same time the doctor pointed to difficult child 1 and said, "HE has Asperger's." and that easy child 2/difficult child 2 was borderline. Now, all three of these kids of ours were also diagnosed with ADHD or ADD (in easy child 2/difficult child 2's case). For our kids, the ADD comes afterwards, it's an added diagnosis. Since then we've been told that ADD & ADHD actually are increasingly being considered as somewhere under the Pervasive Developmental Disorder (PDD) umbrella. We were lucky with this - the medications for ADHD work on all three kids. It's not a perfect fix, but it made enough difference for us to be able to help each child a lot more. OK, now to interventions - I hear your radar thinking, "Oh, good! There is some service or treatment I can plug my child into and it will fix him." Sorry, nope. That is too simple. But that doesn't mean you can't work with your child to get spectacular results. But it comes down to YOU and YOUR CHILD. And WORK. It can also be rewarding, however. Really rewarding. It IS worth the effort. I view my kids, even the adult ones, as works in progress. The adults are still 'cooking' but almost done. In reality, we continue to develop and grow as individuals, all our lives. I remember telephoning my parents often, just to talk and sometimes to ask their advice. I didn't always take their advice, but it was part of the spectrum of information I was gathering to help me make my own choices. Back to what you can do - read "The Explosive Child". Look at the sticky at the top of this forum, it will give you some insight. What I had to do and what I recommend - a change in your mindset towards your child. Stop thinking of your child as being like all toher children and therefore "he should be able to do X without problem". Also any thinking like "He shouldn't still be doing that at his age" also has to get thrown out. You WILL hear people close to you saying this. Do not let it get to you. Do not suddenly get angry with your child because he cannot sit still or cannot stop fidgetting, like the other children. He can't, not at the moment, and you insisting is likely to set him up for failure. But he WILL get there, it will just take longer. I can't tell you how long. You will need Occupational Therapist (OT) be strong and become an advocate for your child. You need to stop being the authority figure and rule-giver, but instead become the facilitator and support for your child. If your child really does have Pervasive Developmental Disorder (PDD) in any form, this is GOOD news. I remember when I was growing up and reading about autism - I was dreading the thought of such a ghastly and enigmatic condition. No way would I ever cope. I could have coped with a child who was blind or a child who was a paraplegic but I hoped I never would have to cope with a child with autism. And I got three! (Well, tow and a half...) But in the intervening time, I've learned a lot more about autism and I have discovered for myself, that it is perhaps the best such disability to wish for, if you have to have one of them. if you want some good news on autism, read up on the writing of Tony Attwood. He does a lot of work with autism and especially Asperger's. We were shown an article by him which lsited the good qualities of someone with Asperger's. They are: 1) loyal. REALLY loyal. The most loyal friend you could ever have, would walk over burning coals for you. 2) Loving. They don't always show love in ways you might recognise, but they feel it very intensely. 3) law-abiding. I caution here though - the laws they follow most are the ones they have worked out for themselves, as what really apply. So if they hear rules being laid down officially, then see people break those rules, that child will then modify the true meaning of the rule to be, "We are told X but people do Y. So Y is also permissible as long as we don't admit to it". 4) Truthful. Again here, a proviso - these kids CAN lie and ALL kids will try to lie to get out of trouble. But Pervasive Developmental Disorder (PDD) kids are so bad at lying, they tend to get caught out. They can't invent a complex alternate truth, not as a rule. Over time and with vigilance always calling them on it, they learn that it is easier to always tell the truth. These last two often mean that a Pervasive Developmental Disorder (PDD) kid will be far less likely to break the rules simply because you're not looking. SO the usual "I have to be the parent and watch my kids like a hawk because I just know they're waiting for the opportunity to break out and run amok" doesn't generally apply to Pervasive Developmental Disorder (PDD) kids. If you have raised them consistently and have a good relationship with them, you will find the usual horrors of teenage years to be far less an issue for you and this child. This is not always the case, but you have a much greater chance of this being so for you and your Aspie child. We have friends in the village whose son is undiagnosed but probably Aspie. He has a lot of other issues too, notably his friendship with the gangs in the town. They have manipulated him, abused his trust and because of his Aspie loyalty, he takes it and has even got a criminal record because he took the blame for someone else's crime. Even the victim of that crime testified it wasn't him, but because this kid had been hiding the weapon for the thug, this kid got the sentence. I think a lot of the problems with this kid, though, come form his own lack of acceptance that he has any sort of a problem. So a lot of it does come down to the attitudes they are exposed to, and how they accept themselves and their abilities/disabilities. We got our own kids on side through a number of methods. First - difficult child 3 was the one with the worst problems and we really needed to focus on him mostly. difficult child 1 was 14 when diagnosed, we did what we could and what we did for difficult child 3 tended to flow on to difficult child 1. difficult child 3 is a computer 'nut'. Always was. He's absolutely amazing. But he was slow to talk, he needed to read first in order to really learn communication. At school he rapidly learned how to use the computers and the teacher would often use him (in Kindergarten) to trouble-shoot computer problems. In turn he would fiddle with settings until he was threatened with being banned. He learned how to bypass our own home password protection when he was 2 years old. Again, he was threatened with being banned if he did it again. So we explained about autism in computer terms. We said to him, "When you get a text file off the printer, all formatted and paragraphed, you cannot tell if it was created on a Mac or a easy child. It can be made to look the same. But the software needed to give each type of computer the instructions on how to do this job, will be very different, for a Mac compared to a easy child. Our brains are similar - some people have Mac brains and some people have easy child brains. it is our job to find the correct software each brain needs, in order to learn best." No value judgements, no identification as to which type of computer his brain was like. No good or bad. It just IS. Because difficult child 3 was reading so much, we would put these things in writing for him and fold them small so he could keep them in his pocket. Any lesson he needed to learn in terms of social skills, we did the same thing. "Throwing stones can hurt people. We don't want to hurt people. So we don't throw stones. If we want to watch things falling, we blow bubbles instead." We maintained a communication book that travelled in his bag between home and school. In it we would write anything of importance tat could help his teacher. In return she wrote of any incident (good or bad) so we always had immediate information. This often helped us identify problems faster. We watched and got help form the relevant therapist when a problem was identified. Eachchild is different so you need to watch and think - you will need to have your wits about you. For example - difficult child 3 would wander, and didn't seem to understand about names so he wouldn't respond when called. We could be searching for him up and down the street, only to find him hidden under the dining table. So we put in a front fence he couldn't get out of. Wr got him help for his language delay - speech pathology. Sometimes the advice we were given was unworkable or seemed to not make sense (such as "Don't let him read" - like, how could we stop him?) but generally we got good stuff. He had problems with hypermobile joints (watch for this one - it seems to go hand in hand with high-functioning autism, I don't know why but there is a high correlation). This meant his hands hurt when he has to use a pen for long periods. He also has problems using cutlery. He has to learn to put up with some pain but also find other ways around the problem. You can get finger splints but we've gone down the route of letting him type his answers to schoolwork. But for some years, he would be very resistant to written schoolwork and he got punished for it. Not good. YOu watch your own child, you strengthen his strengths and use these strengths to help him with his low achievement areas. Anything requiring social skills will need active intervention BY YOU to help him learn and understand. Somme of it will need more time. For example, difficult child 3's Grade 9 English teacher clearly felt she understood autism, but to me clearly did not. She would say to me, "He's clearly very bright, his vocabulary is at university level (the "little professor" syndrome, this is often called) so he should be able to answer my questions. But questions such as, "In this text, what did Joe believe John knew?" This is classic theory of mind stuff and at that time, difficult child 3 just couldn't manage it. He is better at it now, but we gave him a year off English and he is now completing his education at half rate (an option we have here). He should be now in Grade 11, but last year he only did half of Grade 10, the scientific half. He now has to do English and other humanities subjects. The year off has given his brain an extra year to mature. he still needs a lot of help from me (he's a correspondence student) and have his work modified so his ability to understand is considered. THis is a kid who has been doing senior high school Chemistry for some years now, whose grasp of spelling, grammar and vocabulary are amazing. But his ability to analyse a text is still not great. With help he can get there. But you can't expect therapists to do all this. It doesn't come in a pill. Such things can help and should never be neglected, but the greatest work comes from the child himself. Next, the parents. And if all the efforts are coordinated (this includes working with the child, not against the child) then you WILL see amazing results. Marg [/QUOTE]
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