Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 We had this at tribunal, the CHAIR wanted to know what was like, his behaviours, his autism etc, so she asked the headmistress who had only known of him a yr, I say know of him as she was rarely around my son to know him at all! Even our half asleep barrister queried it. It's amazing how many people are experts on other people's children. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Talking this over with Bob, you can imagine a doctor/trickcyclist dealing with a patient they have been fruitlessly " treating " for years for various hard-to-pin down ailments centring around social unhappiness. All of a sudden this patient decides to be happily ASD. Everyone is happy. The doctor isn't expected to offer treatment which costs money because there isn't any treatment. The patient has a label which they can show off to friends. The doctor gets to see the next patient who maybe has schizophrenia ..........All are happy and it's free. I don't think it matters much. I had an ed psyche come and see Edith for the first time yesterday. (Southwark are hopeless which is why I do everything myself). He came with an open mind and a (slight) prejudice in favour of a mild problem. He only had to see her and hear her speak to start saying............. " I'll come back as many times as it takes to get this right.............that's a bit (mutter) at this age............we'll tape her speech and that should persuade social services " etc etc. Talking about other handicapped children who sounded pretty severe to me ( " not as handicapped as yours " ) If you have a handicapped child, then it's easy to prove. We can demonstrate that Edith is handicapped and can't be independent any time by letting someone meet her. I keep hoping someone will say " You've done a wonderful job with her and she's cured " but they all just go pale and say " Well I can see I've got a big task on here (assessing her) " Natasa said it ages ago -- no one is going to stop us looking after our children (which is what treating and advocating are) because if they did they would have to pay someone else to do it. We do a great job for nothing and even lie awake worrying about it xx Sally bbrowne123 wrote: > > well that would be nice wouldnt it, fashionable recovery from > autism. recovery from autism will inevitably open up such a > political pandora's box that will cost billions. > > the politics of autism, always gets in the way. parents like me and > the rest, who remember their children pre autism, who know something > went wrong and know that biomed has helped to heal our children, > also know that autism wasnt just " a genetic aberration " . It wasnt > that autism was just " meant to be " , cause when the illness goes, the > so called " autism " goes with it. i dont set out to " cure " autism. My > son didnt have a problem pre 18months old. i set out to recover from > autism. something happened to the wonderful infant i had, who could > talk, put an 18 piece train set together and play with other > children and kick a ball. I want that boy back. I want to heal him > from the train wreck that went on in his body/brain. > > when parents heal their children, the autism " presentation " can be > reduced or even is removed. so, what exactly was " autism " in the > first place if the presentation/behaviours of autism can be removed > when the body heals??? am i, as a parent to allow my child a life > of pain and discomfort to ensure he never lets the " side " down? so > he can continue to be a shining example of autism personified? > > My son had chronic constipation for 3 years of his life. His > presentation was major hyperactivity, walking on toes, squatting, > hanging over furniture (in pain), chronic viral infections, > respiratory infections, numerous hospital visits, howling in the > middle of the night, bloating, vicious excema and self limited > eating. Well, turns out this wasn't autism at all, (as his doctors > suggested)it was a medical condition. Yeah, it affected how he > thought, he couldnt think because of pain, he couldnt sit still > because of pain/discomfort. His whole being was crying out " help me > mom " . > > He didnt want to be with anyone cause he was concentrating on his > own bowel and how to relieve it. > > others would have thought his strange movements might just be > autism. they weren't. > > I wonder, though in terms of the future, after years of feeling the > pain and discomfort of bowel and other problems, and having a mommy > who couldnt " fix it " how this would impact on his thinking. when you > feel good, you do better, you are happy, ready to engage. when you > dont feel good, you just wanna lie in bed. when you have parents you > expect them to help you in every possible way they can. what parent > with a child like this would say " no johnny, you are autistic, and > we must not help you because if we help you, you might not fulfill > the diagnostic criteria any longer and you might offend your doctor > or other persons with autism????? " > > so by the age of 10, how much time would have been wasted by my boy > concentrating on pain and discomfort? How many opportunities would > have been lost? how much interaction can you have when your guts are > twisted? > > How would you want to " be " with others, or how do you take your mind > off pain to learn new things when in this state? this affects > thought/learning/patterns, etc, > > using biomedical interventions, which is what the parents do on this > board, is not " eradicating " the personhood of those with autism. In > fact, its quite the opposite. Its permitting the person to actually > be who they want to be, (not who they are meant to be by the way, > there is no such thing)minus the medical conditions, giving them a > choice to be something else than a walking talking pain factory. > > as a parent, i have a totally different perspective than a person > with an asd, who does not have children. I must do what is best for > my child. I would gladly take my child's difficulties, including all > the discomfort and pain he has experienced since birth. > > I also believe beyond the shadow of a doubt that autism is man made. > The environment, the filth we have been living in and that has > surrounded us for decades has contributed to the rising rates of > autism dx around the world and our children have suffered for it. we > can pussy foot around this issue, but i am sure many parents here > believe this, my son's porphyrins tests are testimony to this as was > the womb he was gestated in (the average womb is a toxic sea) > > there is so much more this story than just using biomed. My child > has been hurt, and i am angry about that. Not much i can do about > the anger, but as they say, success is the best revenge, and there > is no way I am going to allow my child to just continue on, the way > he did from the age of 2, so that he winds up like the people i > personally have witnessed at the local " mental hospital " i mentiond > earlier. I am not prepared to take any chance on just letting my > son " be " his self, his autistic self or otherwise, whilst he > continues to have physical/medical ailments. > > this is not about being " afraid " of autism. I used to be afraid of > autism pre diagnosis, due to ignorance about the condition. Now i > know more about what autism is and the political machinations that > go on worldwide, to keep autism in a static state. I am berated for > this in my own personal life, and i must remind myself, that the > argument isnt about me or my child, its about the whole world coming > down on parents who dare to help their children from a condition > that doctors know very little about and about whom the government > has no political will to investigate, for very obvious reasons. > > however, when i hear from persons like alexis that autism and > aspergers equal learning disability, i do get angry again because > this misdirected myth is generally believed by society who doesnt > know any better and does much damage to children like mine. I am > also surprised that this comment came from a person with aspergers ( > alexis i did not know you had aspergers as the only time i have ever > seen your name has been in the last in the few days) I would have > thought that you would know that this myth is indeed a myth. > > > > > > > > In a message dated 29/11/2007 22:29:55 GMT Standard Time, > > alexis.atrekkie22@... writes: > > > > I am asking WHO is threatening them with eradication. WHO. Tell me > > > the name of persons or organisations that are advocating that > > > autistics and aspergerians are treated " against their will " or > value > > > fashion or whatever. > > > > Ok, i thought it was the parents here. i guess i was wrong. > > > > > > > > >>>I thought (and of course I maybe wrong) that by us using > biomed to help > > our kids and as we get better at it and more is known, more kids > may recover, > > it could then become 'fashionable' to cure autism/s and then > society as a > > whole, including governements may feel that 'curing' the autism/s > may be best > > for society. (probably for cost issues) > > > > Its at that point the ND's would be threatened, not by indiviudal > or > > organisations but by society as a whole. By treating our kids we > are fuelling this > > fire..............? > > > > But I have never discussed this with anybody ND, so I am guessing > > > > Mandi x (who has been away for 2 days - what a lot of post!!!) > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.9/1158 - Release Date: 28/11/2007 21:11 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 What does bother me however is when stims that dont hurt anyone areseen as bad and have to be corrected. if they dont hurt anyone else(physically or emotionally) then why correct them? >>I haven't set up to correct any stim like this but while we have been working on other health related things they have just gone away. We usually get another one come along to take its place though Tapping the TV moved to tapping one hand on the other, then his chin, the whole tapping thing has gone, now we have the verbals - very loud but its doesn't bother me, I keep hoping he is exercising his voice box and that one day soon the words will come back. He moves his mouth now and tries so hard to get them out. He only stims when he is relaxing, I stim when I am relaxing too. Stims that distract from learning are more tricky, though I know some kids who appear to be unable to learn unless they are stimming. I know some parents don't like stims that make the child 'look autistic', but that doesn't bother me. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 is you have quoted someone else and typed Vicky Said, I'm sure it wasn't me. Both my boys have LD's so unless I'm losing the plot, which is possible, then it wasn't me. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 ----- Original Message ----- From: zpapacarroll It's a very interesting story about your granddaughter! It alsosounds like she is somewhat uncommon in that she had no medical issues- I keep reading that over half of autistics/aspergerians have gutissues, and that with other physical symptoms (like the sensoryproblems that is says she suffers with) and others, most of thesepeople do have medical problems. ====>Oh she did have sensory issues galore. You could not call her anything other than her given name or all hell would break loose. She loved puddles and would head straight for them at 3 but if she got one drop of water on any of her clothing it had to be changed immediately. She would not pet animals and she had sound sensitivity. She obviously had medical issues or supplements/chelation would not have helped but she was absent of the most miserable digestive symptoms that a lot of our kids present with.Now, it seems like you're saying something like: the people who arecomplaining about others' biomedical treatment are not so worried thatsomeone is going to treat *them* against their will as they areworried about what it says about them if people who are "like them"are seen as flawed and in need of treatment. ====>Yes, that is what I think they are objecting to, the rational ones, that is will say it is okay to treat if there are obvious physical problems that are causing pain. And they are most worried about the high functioning children like themselves who people choose to treat. This is not an uncommon dynamic. A lot of deaf people object to coclear implants, little people object to leg lengthening, etc. To me, this attitude is a backlash against the years that these people have been discriminated against (Asperger's kids get the most tormenting from their peers) and if you treat they feel that their past tormentors are validated in their belief and behavior that something is wrong with them. This attitude was not in our minds when we were making the decision to treat. But it's a well known psychological fact that anytime you venture outside of the norm (whether negative or positive) it has an negative impact on the self esteem of the person. Study after study has shown that people who are the happiest are average looking, of average intelligence making an average amount of money. Everyone wants a brilliant child but if you truly want a happy child, wish for average.Are you thinking that by someone else choosing to treat their child,that they are feeling devalued? ====>Here's the piece I am missing. I have always had bad eyesight and have worn contacts since I was in the 4tth grade. If tomorrow, they came up with a way to prevent other children from developing bad eyesight, I would not be threatened, I would be glad, happy estactic that other children did not have to go through what I did, how is this different?The meds that remove lead from the body seem to have a directeffect on his language. Do the lead ions in him somehow become partof his personal identity? ====>No more than the plaque in the arteries of people with arthersclerosis become part of their identity. Not being silly, I think someone couldargue for that if they wanted - we have neurotransmitters that make uswho we are, and all the other minerals, vitamins, chemicals, aminoacids, etc. I think all of this is becoming increasingly difficult asthe newer research showing correlations between mercury and autism,for example, are coming to light. ====>I rejoice with you in the improvement in your son. Not only have you allowed him to function better but you have removed a certain source of future health problems the lead would have caused. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 ----- Original Message ----- From: zpapacarroll This is exactly why everyone needs to stay out of the business ofparents raising their children. ====>Amen! However the pressures are mounting, and have been for some time, to take these rights away from parents. Years ago I noticed this attitude from public school teachers...that regardless of the fact that we were speaking about my child whom I had been with every waking moment of her life...that they somehow knew better what was good for her. Don't accept this premise. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 The head was a professional. She had been trained to know. More importantly (I sometimes think) she was paid to know. You are just a parent, Vicky. You are not paid. Therefore you are nobody. Wages for Housework, say I and then we might get a bit of respect instead of being considered mugs for working for nothing xx Sally MaddiganV@... wrote: > > We had this at tribunal, the CHAIR wanted to know what was like, > his behaviours, his autism etc, so she asked the headmistress who had > only known of him a yr, I say know of him as she was rarely around my > son to know him at all! > Even our half asleep barrister queried it. > It's amazing how many people are experts on other people's children. > Vicky > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: 29/11/2007 20:32 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 is it isn't degrading for me. I love her. Her handicap isn't degrading for her or for me. I wouldn't love her more if she weren't handicapped. Maybe this is part of the misunderstanding. I couldn't love her more. The love isn't conditional on not being handicapped or being less handicapped. If she were less handicapped and able to look after herself (like you) I wouldn't worry about her being abused or neglected when I am no longer around to care for her. I don't want to cure her so that I will feel less degraded. I want to cure her so that she will be safe after I am dead and not around to look after her any longer xxSally atrekkie22 wrote: > > Hello > > > > > Talking this over with Bob, you can imagine a doctor/trickcyclist > > dealing with a patient they have been fruitlessly " treating " for > years for various hard-to-pin down ailments centring around social > > unhappiness. All of a sudden this patient decides to be happily ASD. > > Everyone is happy. The doctor isn't expected to offer treatment > which costs money because there isn't any treatment. The patient has a > label which they can show off to friends. The doctor gets to see the > next patient who maybe has schizophrenia ..........All are happy and > it's free. > > We dont show off our aspergers, in fact we can be hesitant about when > and how to tell people. > > > > I don't think it matters much. I had an ed psyche come and see Edith > for the first time yesterday. (Southwark are hopeless which is why I > do everything myself). He came with an open mind and a (slight) > prejudice in favour of a mild problem. He only had to see her and hear > her speak to start saying............. " I'll come back as many times as > it takes to get this right.............that's a bit (mutter) at this > > age............we'll tape her speech and that should persuade social > > services " etc etc. Talking about other handicapped children who > sounded pretty severe to me ( " not as handicapped as yours " ) If you > have a handicapped child, then it's easy to prove. We can demonstrate > that Edith is handicapped and can't be independent any time by letting > > someone meet her. I keep hoping someone will say " You've done a > > wonderful job with her and she's cured " but they all just go pale > and say " Well I can see I've got a big task on here (assessing her) " > > I can understand how degrading that can be for you. After working to > hard to help her you should be awarded by the authorities. > > > > Natasa said it ages ago -- no one is going to stop us looking after > our children (which is what treating and advocating are) because if > they did they would have to pay someone else to do it. We do a great > job for nothing and even lie awake worrying about it > > > > xx Sally > > is > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: 29/11/2007 20:32 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 ----- Original Message ----- From: atrekkie22 So intense concentration on one task wasnt lost? ====>She had No/nada/zip concentration before supplements/chelation. She has no dx no, not even ADD, if it is concentration that you mean. If you are talking about obsessing on one part of something, then that probably would leave but for heaven sakes...that can't be fun. > You have to dig deeper for the "real" fear. Not to get personalbut can you imagine what it is?The real fear is tht we would be unable to concentrate for longperiods on certain tasks, we would loose our aspie friends, we wouldbe unable to see the world from the unique perspective of anaspie/autie person. ====>First, again, I don't buy this, who do you know or who does anybody you know, know that this happened to, that they lost their concentration? And it's not concentration being lost that I hear so frequently from Aspie's or parents' of Aspies, like my sister. It is the fear of the loss of that keen intellect that so many of them possess. And the resulting loss of ego stroking parents' would fear losing for producing such a bright child. To me, that is pure selfishness on the part of the parent. Second, yes, probably would lose your Aspie friends as you would no longer have commonality. Third, I second Natasa's comments on individuality, we are all individual.> i do have social impairment but its mainly taking hints ====>This is theory of mind, it is the main skill that seperates the NT and Aspie's. It is an inability on some level to understand others' nonverbal behavior as the Aspie has difficulty picking up on things unless they are spoken or spelled out. I have tested 100's of Aspie kids during my career and never saw one who had theory of mind, it is the Litmus test for those "on the edge" of a diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 This is ringing bells, I have read this on ND sites -- that people who treat their children can't love them because they don't accept them and want them changed (true that we want them changed). That they despise them for being different and want them to be the same etc Actually apart from giving us all a good intellectual workout I feel we should do something with these answers. Maybe we need a proclamation -- it is true as zappacarrol said that some people can be very literal. Maybe we need a statement of faith somewhere which includes the words " we love our children and want to give them what everyone else in the world has.....etc " It might be important not to take anything as read or taken for granted. I wouldn't think that many people would need such things spelled out but some might xx Sally Anita wrote: > > > > > > > > And even then she may not get it. > > > > Get what exactly? That you despise difference? > > I cannot presume to know why is might not get what is being said > here, but I think I can safely say from her comment that Celia > despises difference that, in fact, something is not being understood. > > Our wanting to help our children has absolutely nothing to do with > despising their differences. To say such a thing reveals an enormous > ignorance and an unkind, untrue presumption about our love for > them. We are trying to help our children in order to give them > exactly what the ND people seem to value so highly, at least for > themselves, and that is a choice. My son has no choices. He is for > the most part trapped in his fears, in his inability to communicate, > in his body that can no longer have normal bowel movements or digest > food properly or even fall asleep when it is tired. > > My son will not have choices as an adult unless things change for him > drastically. He will not have the luxury of accusing people of > jeopardizing his autonomy. He will have none, and no voice to make > the accusation. And please do not insult me by claiming that my son > might improve all on his own. In my little region alone I know of > adults on the spectrum who are living just the sort of nightmare I am > trying to avoid for my son. For any one adult with autism you can > point out who is, to quote something I just received in my > mailbox, " thriving " , I can show you two who are absolutely not. > > Our society, whether we like it or not, takes away the autonomy of > people who are either a burden or a danger to society. That is why > it is absolutely ridiculous to accuse biomedical parents and > researchers of trying to harm people with autism in any way. We are > offering more choices, not less. How offering options for improving > quality of life can somehow become equivalent to trying to eliminate > a person is completely beyond comprehension. > > The reality is that some people with autism do become so much of a > burden on society or a danger to society that the medical and legal > establishments will force drugs on them and/or confine them. That is > exactly what biomedical parents are NOT about. We want for our > children the choices that human beings are entitled to. No one is > trying to force any sort of biomedical treatments on adults who > choose not to have them. Even if I believe their choice is based > entirely on fear and ignorance, I would not agree that forcing them > is a good idea. > > I have lost my patience completely with the ridiculous accusations > that we as parents are trying to eradicate who are children are. > This list is supposed to be a safe place for people to support each > other in their fight for their children. Debate is fine, but no one > should have to defend themselves against accusations that they > despise the differences in their children. > > Anita > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: 29/11/2007 20:32 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 It's interesting this " accept " -- straight into psychobabble -- if you don't " accept " it then you are looked on as mentally deranged yourself. One of the first things that a health visitor said to me when trying to get me to take Edith to a brain doctor was " You meet the parents of a severely handicapped child. They can't accept they need help. They're in denial " . Very nice Irish woman, back in 1995. The parents of an autistic child have a role laid out for them -- they accept the autism, they accept that they need help, they do what they are told. What I can't understand is how I'm supposed to separate my life from hers so that I can get on with it without her. xx sally brownsauce66 wrote: > > So many people have said to me re Nic. 'poor you, how terrible, but > the quicker you accept his autism and get on with your life the > better for everyone' they see me researching, learning and asking > questions (I'm not one of you clever ones - council estate, crap > comprehensive ed, left school at 16 me!) and maybe feel threatened by > my determination? or by the new me? who knows? > What I say to them is 'i HAVE accepted he has autism, but i'll never > accept his mercury, lead, pcb's, inflammations, allergies, leaky gut, > vit/min deficiencies etc, and if in curing him of his physical > problems it has an impact on his autism - then great!' > (my eldest has IBD and yes, i want to help her recover from that) > > My 2 nt kids have a lifetime of choices ahead of them - THAT'S what I > want for Nic. > And, i also want to add another thing although I shouldn't have to > say it - i love them all equally and unconditionally > > jane > I admire you people, i really do. how do you keep on keeping on? i've > only been here for 6 months and i've aged 10 years! > > > > > > > > > > > > > > And even then she may not get it. > > > > > > > > Get what exactly? That you despise difference? > > > > > > I cannot presume to know why is might not get what is being > said > > > here, but I think I can safely say from her comment that Celia > > > despises difference that, in fact, something is not being > understood. > > > > > > Our wanting to help our children has absolutely nothing to do with > > > despising their differences. To say such a thing reveals an > enormous > > > ignorance and an unkind, untrue presumption about our love for > > > them. We are trying to help our children in order to give them > > > exactly what the ND people seem to value so highly, at least for > > > themselves, and that is a choice. My son has no choices. He is for > > > the most part trapped in his fears, in his inability to > communicate, > > > in his body that can no longer have normal bowel movements or > digest > > > food properly or even fall asleep when it is tired. > > > > > > My son will not have choices as an adult unless things change for > him > > > drastically. He will not have the luxury of accusing people of > > > jeopardizing his autonomy. He will have none, and no voice to make > > > the accusation. And please do not insult me by claiming that my > son > > > might improve all on his own. In my little region alone I know of > > > adults on the spectrum who are living just the sort of nightmare > I am > > > trying to avoid for my son. For any one adult with autism you can > > > point out who is, to quote something I just received in my > > > mailbox, " thriving " , I can show you two who are absolutely not. > > > > > > Our society, whether we like it or not, takes away the autonomy of > > > people who are either a burden or a danger to society. That is why > > > it is absolutely ridiculous to accuse biomedical parents and > > > researchers of trying to harm people with autism in any way. We > are > > > offering more choices, not less. How offering options for > improving > > > quality of life can somehow become equivalent to trying to > eliminate > > > a person is completely beyond comprehension. > > > > > > The reality is that some people with autism do become so much of a > > > burden on society or a danger to society that the medical and > legal > > > establishments will force drugs on them and/or confine them. That > is > > > exactly what biomedical parents are NOT about. We want for our > > > children the choices that human beings are entitled to. No one is > > > trying to force any sort of biomedical treatments on adults who > > > choose not to have them. Even if I believe their choice is based > > > entirely on fear and ignorance, I would not agree that forcing > them > > > is a good idea. > > > > > > I have lost my patience completely with the ridiculous accusations > > > that we as parents are trying to eradicate who are children are. > > > This list is supposed to be a safe place for people to support > each > > > other in their fight for their children. Debate is fine, but no > one > > > should have to defend themselves against accusations that they > > > despise the differences in their children. > > > > > > Anita > > > > > > > > > ---------------------------------------------------------- > ------ > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: > 29/11/2007 20:32 > > > > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: 29/11/2007 20:32 > Quote Link to comment Share on other sites More sharing options...
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