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<blockquote data-quote="Marguerite" data-source="post: 312533" data-attributes="member: 1991"><p>Melinda, I've grabbed a few minutes this morning (Aussie time) to get back to you. I'm glad you've updated a bit in the meantime.</p><p></p><p>A few things you've raised - </p><p></p><p>1) You feel your husband has what your son has, in milder form - yes, that happens. We think it is so in our family too. But it needn't mean the dad has to be disengaged. However, it does make it more difficult for ANYONE with symptoms along this line, to be able to cope with something stressful and challenging. There are ways. We'll help you work on him.</p><p></p><p>2) The IQ test. It is, frankly, meaningless in terms of assessment of your son's intelligence. My reasons - your son has obvious, diagnosed, defined, language impairments. And IQ tests are generally language-based. BOTH my boys 'failed' their first IQ tests too, it happens commonly in Pervasive Developmental Disorder (PDD) especially where there is language delay. To understand this, you need to understand the ORIGINAL purpose of IQ tests, and the circumstances in which they were developed. A group of "normal" kids (normal by standards of the day, which would not have included kids with any significant impairment because they wouldn't have been in the group chosen for testing) were used to set the standards. These kids were tested (using similar tests) and the results graphed. At the halfway point, a line was drawn and declared to be 100 (because exactly half the tested group were above this, half below it). Very arbitrary. And the scores were ranked on either side of this line. It's purely a numbers game. That's how we know that a score of, say, 130, corresponds roughly to the top 1%. Similarly, a score of 70 should correspond roughly to the bottom 1% of the population.</p><p>But remember - the original testing was NOT done on kids way outside the norm. And it would not have been done on kids with any significant language delay (or if it was, it measured them in the low IQ range and skewed the results for everyone, downward).</p><p>All IQ testing is (or should be) is a guide. Once you get a score that is way outside the normal range, you MUST take error into account. That error can be scientifically assessed using Standard Deviation. To be given a score of, say, 143, is meaningless when a score like that is accompanied by an error factor of plus or minus 8 (I haven't got the mathematical symbol for it easy to hand). This means that while the child's scores may calculate out as 143, they RANGE from 135 to 151. The further a score goes from 100, the larger the error, automatically.</p><p>IQ tests are still important, but you have to know how to use them. It sounds to me like whoever told you those scores, gave you exactly the wrong information (because they didn't get it, themselves). The vital information you need from that testing (and all future testing) is - what were the sub-scores? How did he score on each little piece of the test? He may have done brilliantly on mazes, for example. Done appallingly on language-based tests. This information is VITAL in telling you his strengths and weaknesses.</p><p>IQ tests - when difficult child 3 was first assessed he was 4. His language skills were poor, especially his verbal scores. He actually was able to read and understand what he read, much better than he could understand what was said to him. This is still the case even though his language now scores well within normal range (some of his vocabulary is now in the superior range). A casual speech pathology assessment NOW scores difficult child 3 as normal. However, his (absolutely brilliant and thorough) speech pathologist analysed the sub-scores of his speech test and said, "He will always face frustration because although his vocabulary is astounding, his ability to retrieve words and find the right word will always lag. This is a factor of his language delay; at the time he was learning his language, his brain was less malleable than that of his peers." She gave us some exercises to do with him to help in this area, but he will always find it difficult. Indeed, as he gets older his speech dysfluencies are becoming more of an issue. His mind has concepts he wants to communicate, but his brain has trouble finding the exact words he wants, quickly enough.</p><p></p><p>Back to IQ test results - difficult child 3's early results were not given to us, beyond them saying he was "borderline". We were told he would never attend a normal school, and wouldn't be ready for ANY school by the next year; we should wait until he was 6 when the law said we must enrol him somewhere, then put him in a "special" school. They didn't use the word "retarded" (because it's not politically correct) but that is what they meant.</p><p>This is despite them knowing that he was reading numbers and letters (as well as some words and short sentences) at 4, that he had been playing piano and reading sheet music for a couple of years, that he was a skilled computer user and had been since before 12 months of age. They said that such savant skills were a facet of his autism (and yes, he is definitely autistic, my boy) and were a mimic of normality, there was really nothing going on inside that head.</p><p></p><p>They were wrong. And the more we know about savant skills, the more is recognised that in a narrow area (sometimes intensely narrow) that person IS functioning, at a high level. It is NOT a mirror of normality. It's just that in some cases, the window of function/interest is so narrow and so extreme that their lack of function elsewhere seems so dramatic.</p><p></p><p>So I strongly suspect your son has a much higher intelligence than a score of 66 would indicate. And think - if I am right, and everyone around him is treating him like an idiot (literally), then how would you react? Wouldn't you want to kick everyone and everything in sight? I know I would. </p><p></p><p>A common facet of autism (especially high-functioning autism) is a keen sense of injustice. And they can react with violence, when they feel intensely frustrated by what THEY feel is unjust. They develop their own understanding of the rules around them. For example, difficult child 3 knew that it was a school rule that hitting other students was not permitted. However, his own observations showed him that other kids could hit him and not get into trouble (because they knew to do it when no teacher was looking). But if difficult child 3 hit back, he would get seen and get into trouble. So in difficult child 3's mind, the school rule was modified to "hitting another student is not permitted, unless that student is difficult child 3. Then the kids can hit and not get into trouble."</p><p>He also learned that first comes the name calling, then the hitting. One day at a new school a kid got impatient with him just standing there and said, "Get out of my way, dummy!"</p><p>difficult child 3 stood there facing the kid and quietly said, "Go on. Hit me."</p><p>The kid ran to get a teacher (because at this new school hitting was NOT permitted even covertly). The teacher happened to be the principal who told me about this afterwards. It seemed that difficult child 3, far from trying to start a fight, was simply implying to the kid, "OK, you called me names. The next thing that happens is, you hit me. So hurry up and do it. I want to get it over with."</p><p>Very sad. And credit to the other kid for fetching a teacher to sort it out.</p><p></p><p>Kids are often really horrible to someone who is different, especially someone who cannot fend for himself. I thought what difficult child 3 went through was exceptional. It wasn't. It seems to be a common thing in society for people (otherwise intelligent, allegedly law-abiding) to deliberately try to upset and cause trouble to those who are less equipped to cope.</p><p>A feature film was made here a few years ago called "The Black Balloon". My three younger kids had the chance to be in it as bit players. We got to know the male lead actors, playing a teen with profound autism (non-verbal) and his brother who tries to cope and is a bit of a mess emotionally. To get into the role they actually went out in public in character to see how effectively they could play it (and be convincing). The young man playing the autistic brother was Luke Ford (his next role was as the adult Alex Connell in "MUmmy III"). In the special features on the film's DVD, Luke describes how there were times when his co-star (Rhys Wakefield) was not around, and he was horrified at how many people (who clearly should have known better) used this opportunity to try to deliberately provoke him into a rage or meltdown. He said it happened far more than he would have thought. To research the role he spend a lot of time with the profoundly autistic brother of the writer/director, so he knew a lot of the story from the family's point of view. But to find out for himself from the point of view of someone with autism - it horrified him, just how badly they are treated when people think they can get away with it.</p><p></p><p>We don't deliberately mingle with people with autism. However, because over the years we cross paths, we get to know people. difficult child 3's drama class has a number of autistics and Aspies in it. A neighbour if high-functioning autistic (and good friends with difficult child 3). Another neighbour has a son who is profoundly autistic and handicapped. However over the years we've seen this lad make amazing progress. He's now about 12 and beginning to talk with comprehension. There's still a lot of jargon and echolalia, but in there is some really good stuff (including "I love you, Mummy" followed by a hug) and expressing his needs. His face blindness is a problem; it's not complete, but I've noticed he responds more to voices than to faces (difficult child 3 does the same; so does easy child 2/difficult child 2 who as an adult realised she has partial face blindness, or prosopagnosia, not uncommon in Pervasive Developmental Disorder (PDD)). This boy will look blankly at me until I begin to speak. When he hears my voice, then he recognises me.</p><p></p><p>I think I said before, the key to helping these kids is to first meet them where they are. The same goes for your husband. Chances are, each of them has got into a routine of coping, found what helps them and sticks to it like glue. Any attempt to break them out of their comfort zone will trigger stress and potentially, a rage. A comfort zone can be physical or Occupational Therapist (OT) can be mental. Denial is a form of comfort zone.</p><p></p><p>Where they are - their interests. Their obsessions. In "Son Rise", a story of a man who claims to have led his young son from autism to normality, the father describes his son sitting on the floor spinning plates. So the father got his own plates and sat beside his son and began to spin plates too. After some weeks or more of this, a breakthrough came when the son saw one of his father's plates beginning to wobble, and reached out to correct it. After tht they sat spinning plates together. From there they made slow progress but it was still progress. The lesson even a very young (and apparently low IQ) child can learn from this, is - "this person has joined with me here doing what I feel safe doing. I can trust this person because this person is an extension of me and is in my world."</p><p></p><p>You work for that trust and have to keep working to maintain it. Don't jeopardise it. The kind of discipline I suspect your husband is dishing out, is perhaps how he was treated (which can't have been good for him) but may well be perfectly OK for most people. But for people who have poor comprehension; poor impulse control; communication issues - these methods are a recipe for disaster. The Explosive Child explains why and explains the alternatives. Use it on your husband also.</p><p></p><p>My husband was unable to "get into" Explosive Child. So I summarised it for him, taught it to him and over months (years?) we have both slowly improved our parenting. Still a long way to go sometimes, especially between him and difficult child 3, mostly because husband is still a product of his own upbringing plus his own almost certain Asperger's. However, he is really doing an amazing job in trying to find a way to get through to his son.</p><p></p><p>That's what I really want to share with you (and we will need to do this over time) - my own family situation is a bit similar to yours, in having a very challenging Pervasive Developmental Disorder (PDD) son with a husband almost certainly also on the spectrum. I suspect mother in law could also be a factor - she lives nearby, there have always been some oddnesses about her behaviour but because she's a matriarch, she's "allowed" to be how she is. The older she gets, the more individualistic she is becoming as she sees she has earned the right to be herself.</p><p></p><p>I'm not arguing! But I find I have to treat her with kid gloves sometimes, and find ways to deal with the occasional conflicts.</p><p></p><p>One very important thing (which also tells me your son is a lot brighter tan credited) - your weekends are worst, because he's not in school. School provides a routine, but so does home. But school provides mental stimulation, which is VERY difficult to do at home, especially when you have been told to lower your expectations.</p><p></p><p>Try giving your son intellectual stimulation in areas you know he's interested in. If thta means he likes making mud pies, then set him up with a bucket of mud and some pie plates. Put the housework on hold and you and your husband go out and make mud pies too. Don't use your son's mud, get your own until he is ready to share.</p><p></p><p>In difficult child 3's case, he likes bubbles. So we set up a bucket of dilute bubble mix plus large bubble wands. We put it outside (permanently set up) so anytime he wanted to, he could go outside, lift the bubble wands out of the bucket and let the wind make bubbles. Often he would ask me to come out too and blow bubbles. So I did - I would stop what I was doing and go outside to blow bubbles. We also got some small wedding-sized bubble bottles and gave him one to take to school. It lived in his shirt pocket.</p><p></p><p>That's one more thing I mean when I say, "Begin by meeting him where he is."</p><p></p><p>Got to dash now.</p><p></p><p>I'll be back later, it could be another 24 hours. Depends on how we go tonight picking up the kids from their honeymoon!</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 312533, member: 1991"] Melinda, I've grabbed a few minutes this morning (Aussie time) to get back to you. I'm glad you've updated a bit in the meantime. A few things you've raised - 1) You feel your husband has what your son has, in milder form - yes, that happens. We think it is so in our family too. But it needn't mean the dad has to be disengaged. However, it does make it more difficult for ANYONE with symptoms along this line, to be able to cope with something stressful and challenging. There are ways. We'll help you work on him. 2) The IQ test. It is, frankly, meaningless in terms of assessment of your son's intelligence. My reasons - your son has obvious, diagnosed, defined, language impairments. And IQ tests are generally language-based. BOTH my boys 'failed' their first IQ tests too, it happens commonly in Pervasive Developmental Disorder (PDD) especially where there is language delay. To understand this, you need to understand the ORIGINAL purpose of IQ tests, and the circumstances in which they were developed. A group of "normal" kids (normal by standards of the day, which would not have included kids with any significant impairment because they wouldn't have been in the group chosen for testing) were used to set the standards. These kids were tested (using similar tests) and the results graphed. At the halfway point, a line was drawn and declared to be 100 (because exactly half the tested group were above this, half below it). Very arbitrary. And the scores were ranked on either side of this line. It's purely a numbers game. That's how we know that a score of, say, 130, corresponds roughly to the top 1%. Similarly, a score of 70 should correspond roughly to the bottom 1% of the population. But remember - the original testing was NOT done on kids way outside the norm. And it would not have been done on kids with any significant language delay (or if it was, it measured them in the low IQ range and skewed the results for everyone, downward). All IQ testing is (or should be) is a guide. Once you get a score that is way outside the normal range, you MUST take error into account. That error can be scientifically assessed using Standard Deviation. To be given a score of, say, 143, is meaningless when a score like that is accompanied by an error factor of plus or minus 8 (I haven't got the mathematical symbol for it easy to hand). This means that while the child's scores may calculate out as 143, they RANGE from 135 to 151. The further a score goes from 100, the larger the error, automatically. IQ tests are still important, but you have to know how to use them. It sounds to me like whoever told you those scores, gave you exactly the wrong information (because they didn't get it, themselves). The vital information you need from that testing (and all future testing) is - what were the sub-scores? How did he score on each little piece of the test? He may have done brilliantly on mazes, for example. Done appallingly on language-based tests. This information is VITAL in telling you his strengths and weaknesses. IQ tests - when difficult child 3 was first assessed he was 4. His language skills were poor, especially his verbal scores. He actually was able to read and understand what he read, much better than he could understand what was said to him. This is still the case even though his language now scores well within normal range (some of his vocabulary is now in the superior range). A casual speech pathology assessment NOW scores difficult child 3 as normal. However, his (absolutely brilliant and thorough) speech pathologist analysed the sub-scores of his speech test and said, "He will always face frustration because although his vocabulary is astounding, his ability to retrieve words and find the right word will always lag. This is a factor of his language delay; at the time he was learning his language, his brain was less malleable than that of his peers." She gave us some exercises to do with him to help in this area, but he will always find it difficult. Indeed, as he gets older his speech dysfluencies are becoming more of an issue. His mind has concepts he wants to communicate, but his brain has trouble finding the exact words he wants, quickly enough. Back to IQ test results - difficult child 3's early results were not given to us, beyond them saying he was "borderline". We were told he would never attend a normal school, and wouldn't be ready for ANY school by the next year; we should wait until he was 6 when the law said we must enrol him somewhere, then put him in a "special" school. They didn't use the word "retarded" (because it's not politically correct) but that is what they meant. This is despite them knowing that he was reading numbers and letters (as well as some words and short sentences) at 4, that he had been playing piano and reading sheet music for a couple of years, that he was a skilled computer user and had been since before 12 months of age. They said that such savant skills were a facet of his autism (and yes, he is definitely autistic, my boy) and were a mimic of normality, there was really nothing going on inside that head. They were wrong. And the more we know about savant skills, the more is recognised that in a narrow area (sometimes intensely narrow) that person IS functioning, at a high level. It is NOT a mirror of normality. It's just that in some cases, the window of function/interest is so narrow and so extreme that their lack of function elsewhere seems so dramatic. So I strongly suspect your son has a much higher intelligence than a score of 66 would indicate. And think - if I am right, and everyone around him is treating him like an idiot (literally), then how would you react? Wouldn't you want to kick everyone and everything in sight? I know I would. A common facet of autism (especially high-functioning autism) is a keen sense of injustice. And they can react with violence, when they feel intensely frustrated by what THEY feel is unjust. They develop their own understanding of the rules around them. For example, difficult child 3 knew that it was a school rule that hitting other students was not permitted. However, his own observations showed him that other kids could hit him and not get into trouble (because they knew to do it when no teacher was looking). But if difficult child 3 hit back, he would get seen and get into trouble. So in difficult child 3's mind, the school rule was modified to "hitting another student is not permitted, unless that student is difficult child 3. Then the kids can hit and not get into trouble." He also learned that first comes the name calling, then the hitting. One day at a new school a kid got impatient with him just standing there and said, "Get out of my way, dummy!" difficult child 3 stood there facing the kid and quietly said, "Go on. Hit me." The kid ran to get a teacher (because at this new school hitting was NOT permitted even covertly). The teacher happened to be the principal who told me about this afterwards. It seemed that difficult child 3, far from trying to start a fight, was simply implying to the kid, "OK, you called me names. The next thing that happens is, you hit me. So hurry up and do it. I want to get it over with." Very sad. And credit to the other kid for fetching a teacher to sort it out. Kids are often really horrible to someone who is different, especially someone who cannot fend for himself. I thought what difficult child 3 went through was exceptional. It wasn't. It seems to be a common thing in society for people (otherwise intelligent, allegedly law-abiding) to deliberately try to upset and cause trouble to those who are less equipped to cope. A feature film was made here a few years ago called "The Black Balloon". My three younger kids had the chance to be in it as bit players. We got to know the male lead actors, playing a teen with profound autism (non-verbal) and his brother who tries to cope and is a bit of a mess emotionally. To get into the role they actually went out in public in character to see how effectively they could play it (and be convincing). The young man playing the autistic brother was Luke Ford (his next role was as the adult Alex Connell in "MUmmy III"). In the special features on the film's DVD, Luke describes how there were times when his co-star (Rhys Wakefield) was not around, and he was horrified at how many people (who clearly should have known better) used this opportunity to try to deliberately provoke him into a rage or meltdown. He said it happened far more than he would have thought. To research the role he spend a lot of time with the profoundly autistic brother of the writer/director, so he knew a lot of the story from the family's point of view. But to find out for himself from the point of view of someone with autism - it horrified him, just how badly they are treated when people think they can get away with it. We don't deliberately mingle with people with autism. However, because over the years we cross paths, we get to know people. difficult child 3's drama class has a number of autistics and Aspies in it. A neighbour if high-functioning autistic (and good friends with difficult child 3). Another neighbour has a son who is profoundly autistic and handicapped. However over the years we've seen this lad make amazing progress. He's now about 12 and beginning to talk with comprehension. There's still a lot of jargon and echolalia, but in there is some really good stuff (including "I love you, Mummy" followed by a hug) and expressing his needs. His face blindness is a problem; it's not complete, but I've noticed he responds more to voices than to faces (difficult child 3 does the same; so does easy child 2/difficult child 2 who as an adult realised she has partial face blindness, or prosopagnosia, not uncommon in Pervasive Developmental Disorder (PDD)). This boy will look blankly at me until I begin to speak. When he hears my voice, then he recognises me. I think I said before, the key to helping these kids is to first meet them where they are. The same goes for your husband. Chances are, each of them has got into a routine of coping, found what helps them and sticks to it like glue. Any attempt to break them out of their comfort zone will trigger stress and potentially, a rage. A comfort zone can be physical or Occupational Therapist (OT) can be mental. Denial is a form of comfort zone. Where they are - their interests. Their obsessions. In "Son Rise", a story of a man who claims to have led his young son from autism to normality, the father describes his son sitting on the floor spinning plates. So the father got his own plates and sat beside his son and began to spin plates too. After some weeks or more of this, a breakthrough came when the son saw one of his father's plates beginning to wobble, and reached out to correct it. After tht they sat spinning plates together. From there they made slow progress but it was still progress. The lesson even a very young (and apparently low IQ) child can learn from this, is - "this person has joined with me here doing what I feel safe doing. I can trust this person because this person is an extension of me and is in my world." You work for that trust and have to keep working to maintain it. Don't jeopardise it. The kind of discipline I suspect your husband is dishing out, is perhaps how he was treated (which can't have been good for him) but may well be perfectly OK for most people. But for people who have poor comprehension; poor impulse control; communication issues - these methods are a recipe for disaster. The Explosive Child explains why and explains the alternatives. Use it on your husband also. My husband was unable to "get into" Explosive Child. So I summarised it for him, taught it to him and over months (years?) we have both slowly improved our parenting. Still a long way to go sometimes, especially between him and difficult child 3, mostly because husband is still a product of his own upbringing plus his own almost certain Asperger's. However, he is really doing an amazing job in trying to find a way to get through to his son. That's what I really want to share with you (and we will need to do this over time) - my own family situation is a bit similar to yours, in having a very challenging Pervasive Developmental Disorder (PDD) son with a husband almost certainly also on the spectrum. I suspect mother in law could also be a factor - she lives nearby, there have always been some oddnesses about her behaviour but because she's a matriarch, she's "allowed" to be how she is. The older she gets, the more individualistic she is becoming as she sees she has earned the right to be herself. I'm not arguing! But I find I have to treat her with kid gloves sometimes, and find ways to deal with the occasional conflicts. One very important thing (which also tells me your son is a lot brighter tan credited) - your weekends are worst, because he's not in school. School provides a routine, but so does home. But school provides mental stimulation, which is VERY difficult to do at home, especially when you have been told to lower your expectations. Try giving your son intellectual stimulation in areas you know he's interested in. If thta means he likes making mud pies, then set him up with a bucket of mud and some pie plates. Put the housework on hold and you and your husband go out and make mud pies too. Don't use your son's mud, get your own until he is ready to share. In difficult child 3's case, he likes bubbles. So we set up a bucket of dilute bubble mix plus large bubble wands. We put it outside (permanently set up) so anytime he wanted to, he could go outside, lift the bubble wands out of the bucket and let the wind make bubbles. Often he would ask me to come out too and blow bubbles. So I did - I would stop what I was doing and go outside to blow bubbles. We also got some small wedding-sized bubble bottles and gave him one to take to school. It lived in his shirt pocket. That's one more thing I mean when I say, "Begin by meeting him where he is." Got to dash now. I'll be back later, it could be another 24 hours. Depends on how we go tonight picking up the kids from their honeymoon! Marg [/QUOTE]
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