Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Sounds like a fine idea to me! > > > > > > > > Treatment is a good thing... " CURE " has such negative connotations > > > > that I find it totally and outrageously demeaning and > condescedning. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 That could be much more difficult than you think, and I'm speaking as one who has had to fight alone for ages, especially against " experts " . > > > > Good thing I don't let them taint me and fight against them being > > allowed to taint others, then. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 When people talk of fixing someone's genes mutations, that reminds me a bit too much of Nazi Germany, Hitler & Mengele and ethnic cleansing. I am all for enhancing gifts, but I am not for taking away the very thing(s) that might bring those gifts in the first place. And that's not what cure means just to me - it's what cure means to many people. I also was giving my own point of view, not speaking for others, although others have an alarming tendency at times to speak for me, at me, and around me rather than to me. :-) > > > > Pro-cure means abolishing the " curse " that " kidnaps " children and > > holds families " hostage. " Anti-cure is not anti-treatment - treat my > > symptoms, but by no means rob me of my gifts. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 That's the ultimate goal, isn't it? > > > In a message dated 2/3/08 7:06:45 A.M. Eastern Standard Time, > bubbetta@... writes: > > Let's figure out a way to all be on the same side so we can all put our > energy into helping the kids instead of fighting one another. > > > i am so glad that we are asking what words mean instead of yelling. i think > this is some wonderful progress and will help us 'to be on the same side' > doing all we can for our kids > eric abbys dad > > > > **************Biggest Grammy Award surprises of all time on AOL Music. > (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 > 48) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Thank you - I just wish these words weren't even necessary... > > > In a message dated 2/3/08 2:50:38 A.M. Eastern Standard Time, > sharisajoy@... writes: > > Pro-cure means abolishing the " curse " that " kidnaps " children and > holds families " hostage. " Anti-cure is not anti-treatment - treat my > symptoms, but by no means rob me of my gifts. > > > > excellent use of words. > Abby's dad > > > > **************Biggest Grammy Award surprises of all time on AOL Music. > (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 > 48) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Thank you - I just wish these words weren't even necessary... > > > In a message dated 2/3/08 2:50:38 A.M. Eastern Standard Time, > sharisajoy@... writes: > > Pro-cure means abolishing the " curse " that " kidnaps " children and > holds families " hostage. " Anti-cure is not anti-treatment - treat my > symptoms, but by no means rob me of my gifts. > > > > excellent use of words. > Abby's dad > > > > **************Biggest Grammy Award surprises of all time on AOL Music. > (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 > 48) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 As one whose picture has been painted and tainted with the brushstrokes of prejudice and discrimination, I can only agree. > > > In a message dated 2/3/08 11:18:33 A.M. Eastern Standard Time, > fightingautism@... writes: > > Some researchers in > the autism community have had a horribly untrue picture painted about > them, just as people with autism often get horribly untrue pictures > painted about them. > > > this is truly difficult. > eric abbys dad > > > > **************Biggest Grammy Award surprises of all time on AOL Music. > (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 > 48) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 As one whose picture has been painted and tainted with the brushstrokes of prejudice and discrimination, I can only agree. > > > In a message dated 2/3/08 11:18:33 A.M. Eastern Standard Time, > fightingautism@... writes: > > Some researchers in > the autism community have had a horribly untrue picture painted about > them, just as people with autism often get horribly untrue pictures > painted about them. > > > this is truly difficult. > eric abbys dad > > > > **************Biggest Grammy Award surprises of all time on AOL Music. > (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 > 48) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Sondra, Although that's sadly true, we must never stop trying to co-exist peacefully with other people rather than trying to destroy the planet we all share. > > there is not ever going to be a way to express teh multiple views on > autism because it varies as much as the religions of this world, as the > cultures of this world and so there is never going to be of a complete > accepatance of others views just as there will never be of one religion > or belief system for the entire world because people will be to cling > to their own belief system no matter what the words or terminology is > to be. > Sondra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Sondra, Although that's sadly true, we must never stop trying to co-exist peacefully with other people rather than trying to destroy the planet we all share. > > there is not ever going to be a way to express teh multiple views on > autism because it varies as much as the religions of this world, as the > cultures of this world and so there is never going to be of a complete > accepatance of others views just as there will never be of one religion > or belief system for the entire world because people will be to cling > to their own belief system no matter what the words or terminology is > to be. > Sondra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 I am certain some will view this as heresy, and some will not, but I can not help but ask that people consider something. Many people tell me, it must be very difficult to have an autistic child. She is very lucky to have you as a father. WRONG! I know that every day is a struggle for her, but in reality, I am the one who is lucky to have her. She has a perception about life that I don't even begin to understand. She has an intellect that never ceases trying to learn. At an age when most girls begin to become click oriented, she will take the time to teach me how to be a kid again. Although she can be very violent, she can be equally compasionate. Treat the symptoms, of course, but let's fully understand what we are dealing with before we try to genetically abolish it. You can only understand the sunshine because it also rains. Sharisa Joy Kochmeister wrote: I support researchers who seek to treat people's symptoms as symptoms of something. I don't support those who want to cleanse the race of people with autism... as for my own stance, it is my stance and mine alone - if people agree with me, fine; if not, also fine... but I will still speak out as someone who values freedom of speech even more after I spent almost 12 years with no way to communicate. > > > > Let's figure out a way to all be on the same side so we can all put our > > energy into helping the kids instead of fighting one another. The more > > I read the words of the anti-cure " camps " , the more I sense that a large > > proportion of both sides actually AGREE, except that the " camps " are > > using radically different terminology, and it's the terminology that > > needs to be updated and agreed upon. > --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 My father who has always felt the same way you do and I applaud you and tell you that you're lucky to have each other! Sharisa Joy > > > > > > Let's figure out a way to all be on the same side so we can all > put our > > > energy into helping the kids instead of fighting one another. The > more > > > I read the words of the anti-cure " camps " , the more I sense that a > large > > > proportion of both sides actually AGREE, except that the " camps " are > > > using radically different terminology, and it's the terminology that > > > needs to be updated and agreed upon. > > > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 I to agree we must not stop trying but was saying that this is of the norms there is of too many voices and too many views and perceptions for it to ever become really unified as a one view or one voice or perceptions. Some insist that ALL autism is vaccine realted. Then some will say ALL autism is environmental Then some say lets CURE them ALL And some say dont CURE ME And some see it as a curese from God And some see it as a blessing from God Some say autism = retardation Some see those on spectrum as little geniuses Some insiste teh diet is of the only way Others dispute it Some say ABA is the only way Others say NO RDI is? Some say no Biromedical interventions are Some say Autism does not exist it is of just a catch all for everyone who is different Some say those with aspergers or HFA are not of autism but just acting rude and spoiled Some say those with real autism are non verbal creatures who do not interact, relate and self stim in isolates states of being So you see how complex it is of to get a unified voice when there is of too much ideas out there to change... and no matter the voice many will not let go of their own to expand the learning of their own beings to see others points of view. But if we stay silent we do not allow a differnet perspective to be explored, if we stay silent we do not build our own ideas and thinking to expand it, if we stay silent we subcomb to the full beliefs of others so in true Sharisa we cant stay silent this is of true/// Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 I to wanted to add the sunshine and rain.... Her in the USA we take for granted the snow.... some see it as a disaster, some enjoy it and love to do sports and or play in it, some love the beauty that the snow can bring but regardless each winter many of the states know it will snow to some extent...... But those who never ever get snow like Cuba only can imagine snow... the one author of a book titled Waiting for Snow in Havanna tells of hims life as a cuban and then later as an exiled boy to america. he comes to say that the most oppressed countries and poor contries are those who have no snow.... because snow means seasons which means crops and foods of variety and it means prosperity to hae of the wealth of food always available .... So in autism those who never get to experience it never know what it is of truely like.... they can only imagine of it.... But if the family is of healthy they will be prosporous in diversity and understand of hte unique beauty that autism can bring for their families. But some days just like old snow it needs to be cleaned up and it gets sloshy and dirty and does not hold the beauty again until the next snow fall. that is because autism or not NO one person ever holds perfection and reflects only positive emotions, healthy thinking, compassions and such.... because some days they do reflect like old snow.... but because we have experienced the beauty of the new snow we can anticipate those days with fair expectations. Just my rambling this day. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Thank you Sondra. I never meant to indicate that no days had their bad sides, i.e. the waiting to see who your child bit or kicked today. How many times she was physically hauled out of class to an isolation room, and how many times I get hit or kicked when she melts down. What I do mean to say is I will take it all for the privilage of having my daughter. She is the single greatest moment in my life. sondra wrote: I to wanted to add the sunshine and rain.... Her in the USA we take for granted the snow.... some see it as a disaster, some enjoy it and love to do sports and or play in it, some love the beauty that the snow can bring but regardless each winter many of the states know it will snow to some extent...... But those who never ever get snow like Cuba only can imagine snow... the one author of a book titled Waiting for Snow in Havanna tells of hims life as a cuban and then later as an exiled boy to america. he comes to say that the most oppressed countries and poor contries are those who have no snow.... because snow means seasons which means crops and foods of variety and it means prosperity to hae of the wealth of food always available .... So in autism those who never get to experience it never know what it is of truely like.... they can only imagine of it.... But if the family is of healthy they will be prosporous in diversity and understand of hte unique beauty that autism can bring for their families. But some days just like old snow it needs to be cleaned up and it gets sloshy and dirty and does not hold the beauty again until the next snow fall. that is because autism or not NO one person ever holds perfection and reflects only positive emotions, healthy thinking, compassions and such.... because some days they do reflect like old snow.... but because we have experienced the beauty of the new snow we can anticipate those days with fair expectations. Just my rambling this day. Sondra --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Well said. But we can work to build an evironment that supports families and individuals with ASRD -- realize that most all of them are hurting, encourages parents/educators/society to work hard for their kids, educates folks on all the different ways to deal with the difficulties they face and supports them in making their own choices, and helps provide safety nets and other supports for people who need them. I think this board does many of those things. It won't fix everyone's difficulties but it's a good place to start. -- Cassie sondra wrote: > I to agree we must not stop trying but was saying that this is of the > norms there is of too many voices and too many views and perceptions > for it to ever become really unified as a one view or one voice or > perceptions. > > Some insist that ALL autism is vaccine realted. > > Then some will say ALL autism is environmental > > Then some say lets CURE them ALL > > And some say dont CURE ME > > And some see it as a curese from God > > And some see it as a blessing from God > > Some say autism = retardation > > Some see those on spectrum as little geniuses > > Some insiste teh diet is of the only way > > Others dispute it > > Some say ABA is the only way > > Others say NO RDI is? > > Some say no Biromedical interventions are > > Some say Autism does not exist it is of just a catch all for everyone > who is different > > Some say those with aspergers or HFA are not of autism but just > acting rude and spoiled > > Some say those with real autism are non verbal creatures who do not > interact, relate and self stim in isolates states of being > > So you see how complex it is of to get a unified voice when there is > of too much ideas out there to change... and no matter the voice many > will not let go of their own to expand the learning of their own > beings to see others points of view. > > But if we stay silent we do not allow a differnet perspective to be > explored, if we stay silent we do not build our own ideas and > thinking to expand it, if we stay silent we subcomb to the full > beliefs of others so in true Sharisa we cant stay silent this is of > true/// > Sondra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Sondra -- you really have a gift for words. -- Cassie sondra wrote: > I to wanted to add the sunshine and rain.... Her in the USA we > take for granted the snow.... some see it as a disaster, some enjoy > it and love to do sports and or play in it, some love the beauty that > the snow can bring but regardless each winter many of the states know > it will snow to some extent...... > > But those who never ever get snow like Cuba only can imagine snow... > the one author of a book titled Waiting for Snow in Havanna tells of > hims life as a cuban and then later as an exiled boy to america. he > comes to say that the most oppressed countries and poor contries are > those who have no snow.... because snow means seasons which means > crops and foods of variety and it means prosperity to hae of the > wealth of food always available .... > > So in autism those who never get to experience it never know what it > is of truely like.... they can only imagine of it.... But if the > family is of healthy they will be prosporous in diversity and > understand of hte unique beauty that autism can bring for their > families. But some days just like old snow it needs to be cleaned up > and it gets sloshy and dirty and does not hold the beauty again until > the next snow fall. that is because autism or not NO one person ever > holds perfection and reflects only positive emotions, healthy > thinking, compassions and such.... because some days they do reflect > like old snow.... but because we have experienced the beauty of the > new snow we can anticipate those days with fair expectations. > > Just my rambling this day. > > Sondra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 In a message dated 2/3/2008 6:41:27 P.M. Central Standard Time, bubbetta@... writes: A good beginning would be some common terminology that we can agree on, and a new " CAMP " of us from both the old " camps " , where we both begin to use this new common terminology, lingo, language all over the place, on list serves, in books, at conferences, and we talk in ways that promote more unity than fighting and division. My one cent worth, Penny sounds good. i want to be in this new camp. sign me up! Crabtail **************Biggest Grammy Award surprises of all time on AOL Music. (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 48) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 What Sharisa said. Preach on =) Kassiane --- Sharisa Joy Kochmeister wrote: > Pro-cure means abolishing the " curse " that " kidnaps " > children and > holds families " hostage. " Anti-cure is not > anti-treatment - treat my > symptoms, but by no means rob me of my gifts. > > > > > > > > > Treatment is a good thing... " CURE " has such > negative connotations > > > that I find it totally and outrageously > demeaning and condescedning. > > > > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 crab tail yes you can be to share of it. I to be of to add am of much a heart for the cuban exiles and my heart is of much compassions to them. it is of one of my most strongest interests, besides autism. I to have around 40-50 books on Cuba and trying to make a strong library of the subject. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Thanks Kassi, they just can't seem to keep my mind shut! > > > > > > > > Treatment is a good thing... " CURE " has such > > negative connotations > > > > that I find it totally and outrageously > > demeaning and condescedning. > > > > > > > > > > > > > ________________________________________________________________________________\ ____ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 sharisa this is of good that they cant shut up our minds... they can our mouths but not our thinkings. I to remember much years in restraints and not having any real interactions and was much isolated and was of not able to speak so had a long time of being of mute.... and yet inside of me had of that thinking because within me my words and thinking still danced within me. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 WHEN I BEGAN RESEARCHING TREATMENT AND INTERVENTIONS, THE WORDS THAT LEAPT AT ME WERE " CURE " AND " RECOVER " . I began to use those words, too. They made sense to me. Then, somewhere not too far into my journey down this pathway, I met folks like Kassiane and Sondra, and I began to read books by authors with autism, and I began to listen, try to hear their perspective, even as some of them so harshly criticized me for trying to help my child. What I hear, though, as I listen, and as I have opportunities to ask questions, and to clarify with them for MEANING, is that there is a HUGE HUGE amount of AGREEMENT between the two " camps " , the BIG GLARING DIFFERENCE is the terminology we used. When a parent has a child that is newly diagnosed, they're going to find the same words that I found: cure and recover. I give Kassi credit for making me see how my language could be making my daughter feel " less than " . Kathie Snow reminded me that she's fine just the way she is. And yet, I want her to feel better, to remove or reduce obstacles and to help her learn to do that for herself, and to give her experience communicating with reciprocity and not merely manding and getting needs met. I think that is what most parents want. A good beginning would be some common terminology that we can agree on, and a new " CAMP " of us from both the old " camps " , where we both begin to use this new common terminology, lingo, language all over the place, on list serves, in books, at conferences, and we talk in ways that promote more unity than fighting and division. My one cent worth, Penny > > there is not ever going to be a way to express teh multiple views on > autism because it varies as much as the religions of this world, as the > cultures of this world and so there is never going to be of a complete > accepatance of others views just as there will never be of one religion > or belief system for the entire world because people will be to cling > to their own belief system no matter what the words or terminology is > to be. > Sondra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Penny I to wish the same. I to wish we can get of the mind set to be of to change but it is of a slow process. Sondra In Autism_in_Girls , " penelope_fam " wrote: > > WHEN I BEGAN RESEARCHING TREATMENT AND INTERVENTIONS, THE WORDS THAT > LEAPT AT ME WERE " CURE " AND " RECOVER " . I began to use those words, too. > > They made sense to me. Then, somewhere not too far into my journey down > this pathway, I met folks like Kassiane and Sondra, and I began to read > books by authors with autism, and I began to listen, try to hear their > perspective, even as some of them so harshly criticized me for trying to > help my child. What I hear, though, as I listen, and as I have > opportunities to ask questions, and to clarify with them for MEANING, is > that there is a HUGE HUGE amount of AGREEMENT between the two " camps " , > the BIG GLARING DIFFERENCE is the terminology we used. > > When a parent has a child that is newly diagnosed, they're going to find > the same words that I found: cure and recover. > > I give Kassi credit for making me see how my language could be making my > daughter feel " less than " . Kathie Snow reminded me that she's fine just > the way she is. And yet, I want her to feel better, to remove or reduce > obstacles and to help her learn to do that for herself, and to give her > experience communicating with reciprocity and not merely manding and > getting needs met. > > I think that is what most parents want. > > A good beginning would be some common terminology that we can agree on, > and a new " CAMP " of us from both the old " camps " , where we both begin to > use this new common terminology, lingo, language all over the place, on > list serves, in books, at conferences, and we talk in ways that promote > more unity than fighting and division. > > My one cent worth, Penny > > > > > there is not ever going to be a way to express teh multiple views on > > autism because it varies as much as the religions of this world, as > the > > cultures of this world and so there is never going to be of a complete > > accepatance of others views just as there will never be of one > religion > > or belief system for the entire world because people will be to cling > > to their own belief system no matter what the words or terminology is > > to be. > > Sondra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Worth at least 2 cents, Penny! Or Tuppence! .. > > > > there is not ever going to be a way to express teh multiple views on > > autism because it varies as much as the religions of this world, as > the > > cultures of this world and so there is never going to be of a complete > > accepatance of others views just as there will never be of one > religion > > or belief system for the entire world because people will be to cling > > to their own belief system no matter what the words or terminology is > > to be. > > Sondra > > > Quote Link to comment Share on other sites More sharing options...
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