Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 After a couple of days of these emails, I think we can safely say no-one's opinion about autism has been changed one way or another. Let's agree to disagree and let this topic go. We're simply beating a dead horse now..... Diane ('s Mom) P.S. Debi, I'm so sorry to hear about your SIL. She must be going through hell. Kassi I'm Sorry Kassi, I was not talking to you as a 4 year old. I was talking to you as I would talk to any friend or family that I knew was frusterated and was trying to help them to know from my words and tone that I was not angry and was trying to be calm and allow myself to find the right words that would not hurt or frusterate anyone. You are right that I do not know you, but you also do not know me any better than I know you. Do you think that people here do not know that there is sexual abuse and many other illnesses out there? Do you think that we are not concerned about those? well it sounded like that is what you think from what you said, and first off at least half of us on this group are in that 90% you spoke of having been sexually abused or at very least are trying to help our loved ones who have or are still being abused. Most of us on here struggle with many of our own health issues. We have diabetes, insulin resistance, depression, Bi polar disorder, Crohn's disease, some of us here probably even have cancer. And we are not freaking out and getting so defensive over what everybody else says about these topics. Kassi I am sorry. I already appologized that you are affended, but just because you have an opinion does not mean others are not entitled to one or to contradict yours. That is the way of a FREE country. If you don't like it move somewhere else and get told what to do in every aspect of your life by a dictator. People are allowed to an opinion in a free world, even if it is a bad opinion. If you don't like other's voicing there opinions and thoughts then don't read their posts. It is as simple as that. I have a father who is very rude and condecending to me and has been all my life. He writes me e-mails on a regular basis. Some of them are nice, some of them are very rude. I could block his e-mail, but I enjoy some of the nice e-mails he sends and I love him, so therefore when I get an e-mail from him then I scim through it before reading it thoroughly. I do this because if I read it thoroughly, then I might hate him again and not be able to respond politely and I might never speak to him again. So if there are things that seem negative and like I won't enjoy the letter then I throw it away to the trash bin. You or any one can judge me all they want and say I should do this or that or that's not how they do it. Fine, but the reason I mentioned it is because I am the one who chooses whether or not I will be happy, not you or any one on this post, not my parents, not my past, not anyone and so my method of being able to stay happy, sometimes is by ignoring people who are being rude and trying to get a " rise " out of me. The reason that I chose to post to you, is because it seemed to me that maybe you wanted to really talk or understand that not everyone is how you have in the past clumped them together to be. But maybe I was wrong. Anyone can take anything the way that they want to and I am not being condecending, this is how I speak to everyone, my husband, my friends and my 4 year old alike. If you choose to be an angry, unhappy, bitter person than there is nothing that anyone on here can say or do to help you and there is no point in us trying to help you see how we feel or see things if you don't want to and if you don't care. But just know that in the future you may not get many responces from people if you treat them so unkindly and if you snap at everyone who tries to come near you or share there opinion. You said that you don't want anyone to speak to you like you are a child, so that is why I am trying harder to be blunt. Maybe you haven't payed attention to this before, but many people let children get away with everything and they agree with them and they let them say or do or think what ever they want and they don't call them on it, because " Oh they are just little kids " , but with adults they have conversations like this, where they say " you are being rude, please curb your temper and stop the bad attitude " . So if you want to be treated like an adult and the way the majority of the world is treated then don't be mad at us for posting to you and treating you like a " grown up " . If you want us to treat you like a child or a person with a disability then we'll coddle you. Take your pick! You don't get both. I too, am pretty fed up with your insensitive, rude, and bold statements. Until now I have never really said a thing to you about it. You may think that everyone jumped at you, but they are only trying to defend themselves and are getting tired of the negativity about any solution or hope for them and their children in the future. They are allowed to hope for whatever they want to. And not one of us is going to ever do anything to try and harm our children. Why do you think we are always on here asking you and Sondra and and everyones advice or opinions. We are trying to make the best most infomative decision possible for our babies. They are not old enough to make these decisions yet regardless of their Autism or not, even if you are. As for me, I told you that my way of handling uncomfortable situations is usually to ignore them. I decided not to this time, to try and give you another chance to just let it go and stop being so rude, but if you keep up the rude nasty responses to people, I will not read or repond to any more of those posts, they will go in my trash been too. So please, I know you have many nice and helpful things to say, please leave this alone and accept peoples opinions and appologies and share the opinions you have without saying such intentionally hurtful things to others. If you can't then I wish you well, and will possibly respond or read your posts again, down the road when and if you can be a little kinder. In the meantime here are a few books and a quote that I think may help you in your Comunication area. You said you agree that people can get new and better skills, so please try that. Again, as somebody else said in here before " Nobody wants to fix you Kassi " They honestly don't, not your Autism anyway. They want you to be a little nicer and less aggressive and yah there are people who have those personalities without being autistic and they are called " Scrooge " and nobody likes them. But people can change their personalities too, and in any kind of relationship you have to work on your personality little by little to get along with others, or you will end up a charity case or very lonely. Nobody wants you to be lonely, so please try. One book that has really helped me in dealing with my own and others personality and communication issues is called " How to Hug a porcupine " by Lund and the other is " When bad things happen to good people " by I think the guys last name is Kushner or somthing. I don't know if you are religeous or not or what your religion is, but he is a Jewish Rabi. I am not jewish at all, but he is not preachy and his book is not about religion, it is about hardships that humans must face and learn to overcome. And there is one quote from the Movie " Ray " that I really appreciated that I would like to share with you Kassi. I am not going to be able to get it word for word, but it his mom in the movie tells him that just because he's blind she doesn't want him using that as a crutch and she doesn't want him hating the world and others because of his difference and she doesn't want him to ever give up and let himself just become a charity case. I can tell that you are a fighter and you are not going to give up. I can tell that even if I don't know you and even without ever meeting you. Those are very good attributes, but we have to learn how to find a happy medium in every aspect of life. None of us here want you to roll over and take crap from any body, but we also won't do that, Ok? So again, I am sorry for accidently using words that have offended you. But honestly Kassi, I didn't mean to. I'm not perfect at choosing my words either. No one is, but we all work hard at it. Maybe in the past we haven't had to try as hard as you, but we are not giving up and you need to try harder right now to use less swear words and less insults. We would all be happier, even you. I hope you can understand that like I said at the end of my first letter, asking somebody what they meant some times is a much better way to go about communication, because then you know their intent or what they were trying to say, if they accidently chose poor wording. So please instead of lashing back again, if you don't understand what I meant than ask. And just to clarify this for you, I am not saying that you don't understand because you are autistic. Anyone can and does misunderstand every day. So I just mean as a Human being, not anything else, just ask. Lets get past this please. I am sorry! Esther And PS nobody likes Paris Hilton except herself. The only reason she appears on all of everything is because her dad has thousands and millions of money and he pays for his selfish daughter to do whatever she wants --- kassihatestwistin wrote: > > > > > Thank you Tina for saying that. Kassi, I too am > sorry > > that maybe your parents did not try as hard as > some of > > us parents are trying and maybe they did and they > just > > did not have the recourses that are available to > us > > today, > > a. and b. But given that I have a friend with SEVERE > PTSD from ABA (adult. one of the > original " indistinguishable from peers.) I think > I'll stick with what I got, minus the peer > abuse. Thanks anyway. > > >but I watch my daughters crying and screaming > > and hurting themselves because they don't know how > to > > express to me what they want or what they need. It > > rips my heart into pieces standing by and not only > am > > I unable to help, but I don't even know what they > want > > because they don't and can't tell me. > > I'll give you $100 if you can tell me where I said > I'm against progress, if you'll give me > $100 and an apology when you see it isn't there, > because it isn't true. Teaching > communication skills isnt the same thing as curing > autism. > > I try guessing, > > I ask them anything that I can, anything that I > think > > that they might want. And they just scream and > beat > > their head into a wall or bite themselves or pull > > their hair. Then they throw things at me and try > to > > bite me and they cry more. I sometimes end up > figuring > > out what they wanted and then they are fine. But > > sometimes I can't guess, because I don't know. The > > other day my daughter cried and screamed and did > this > > for 25 minutes while I tried to show her options, > and > > tried to use sign language and tried to use any > words > > or pictures I could think of. > > Hi. Im bipolar. I could easily throw an hours long > tantrum. Again, teaching communication > and frustration management isn't cure. *hates > repeating herself. has said this over 2000 > times*. > > I could not guess and > > she was very sad and mad all at once. Finally I > told > > her I could not help her, that I loved her and > gave > > her a hug, but that until she could tell me or > point > > to what she wanted I would have to leave. She just > > kept saying NO, No mommy, but that doesn't tell me > > what to do. Finally she cried Snowman. Normally > people > > would think what does that have to do with > anything. > > But for years now I have sang a song to her about > a > > snowman. She never said anything about it, I never > > knew she was even paying attention, and I sing her > a > > lot of other songs, so when I tried guessing if > she > > wanted singing, I had started singing a different > song > > earlier. Well once she said that one word, I sang > her > > the song and she was sooooo happy and said I love > you > > and hugged me and it was a wonderful moment. That > was > > her personality Kassi, not the screaming and > > tantruming because she is fed up and doesn't know > how > > to say words to me and I can not read minds. > > Screaming and tantrumming cover up the happiness > that people call their personalities. > Fine. > > Now lets pretend there are autistic people who don't > tantrum. Are they without personality > if they can't speak? No. Are there non autistic > people who are more likely to throw a hissy > fit than others? yes. It's part of their > personality. Really. It is. Stoicism vs something I > can't > remember. > > Like it or not, autism is IN OUR BRAINS. It isn't > vaccines. It isnt measles in the gut. It is A > BRAIN DIFFERENCE. Check out the scans sometime. > > >Maybe you > > also wish that we " NT people " as you keep calling > us > > in a negative way, could read your mind. > > NT=Neurotypical. No one is normal. You don't know > that I always use it negatively. Kindly > don't try to read my mind, you don't even know me, > my skills, or lack thereof. You just > have a pile of assumptions. > > >Sometimes > > even NT people wish that someone could read their > mind > > too, so that they didn't have to try so hard > either, > > but that is not possible. > > You read each other's minds all the time. It's > subtle, but you do it. I went to high school > not long ago. I remember. > > >So it is not that we want the People who > > have Autism to go away Kassi. We of anyone, love > our > > children and spouses and friends who are afflicted > > with Autism. > > It's damned insulting to call it an affliction. > Autism as a whole doesn't suck. > Communication problems suck. Frustration intolerance > sucks. Other people's attitudes > suck. Autism, itself, isn't that bad. > > >We even love you Kassi. Even if you don't > > believe that. We love you for being willing to > help us > > understand you and how you think so that we can > better > > understand our angels. But please don't critisise > us > > for wanting to help our families. Our children > have > > illness. The thing is, you are confused thinking > that > > we want to get rid of our children and want to > take > > away their sparkling personalities. Of course we > don't > > want to do that, we only want to eliminate the > > sickness part of autism. > > I have illnesses too. They're called pituitary > failure and celiac disease. Well, and epilepsy is > kind of on the line. Autism DOES NOT MAKE PEOPLE > SICK AND DOES NOT KILL THEM. Read > some old skool Jim Sinclair. > > >The part where for some > > reason they are unable to express themselves and > how > > they feel and the part where they are able to use > the > > bathroom and not a diaper, and the part where they > can > > maybe someday be ok on their own and be able to > stand > > up for themselves if we have to go to the > bathroom, or > > to work, or when we age and one day pass away. > That is > > what we want. We don't want them to all look alike > and > > act alike. > > Teaching self advocacy and independance skill is a > better way to achieve an independant, > or semi independant, life for autistic people than > trying to rewire them is. > > >You are right that " The World " or " the > > Media " as a whole tends to want to eliminate > > individualism. But that has nothing to do with > Autism, > > they don't want any one one to be unique or stand > out. > > Except Paris Hilton *barfs* > > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 > > Kassi, > I was not talking to you as a 4 year old. I was > talking to you as I would talk to any friend or family > that I knew was frusterated and was trying to help > them to know from my words and tone that I was not > angry and was trying to be calm and allow myself to > find the right words that would not hurt or frusterate > anyone. Talking to me like I'm not too bright tends to irritate me more. > You are right that I do not know you, but you also do > not know me any better than I know you. Do you think > that people here do not know that there is sexual > abuse and many other illnesses out there? Do you think > that we are not concerned about those? Didn't say you weren't. I AM saying, however, that ending those is more important than changing children. > well it sounded like that is what you think from what > you said, and first off at least half of us on this > group are in that 90% you spoke of having been > sexually abused or at very least are trying to help > our loved ones who have or are still being abused. > Most of us on here struggle with many of our own > health issues. We have diabetes, insulin resistance, > depression, Bi polar disorder, Crohn's disease, some > of us here probably even have cancer. And we are not > freaking out and getting so defensive over what > everybody else says about these topics. Anyone looking for the genes for insulin resistance to abort people likely to develop it? Nope. Autism gets that honor though. And you wonder why I am angry. > Kassi I am sorry. I already appologized that you are > affended, but just because you have an opinion does > not mean others are not entitled to one or to > contradict yours. That is the way of a FREE country. > If you don't like it move somewhere else and get told > what to do in every aspect of your life by a dictator. > People are allowed to an opinion in a free world, even > if it is a bad opinion. If you don't like other's > voicing there opinions and thoughts then don't read > their posts. It is as simple as that. Goes both ways. Don't like my opinions, don't read my posts. It's not a " free to NTs only " country. > You or any one can judge me all they want and say I > should do this or that or that's not how they do it. > Fine, but the reason I mentioned it is because I am > the one who chooses whether or not I will be happy, > not you or any one on this post, not my parents, not > my past, not anyone and so my method of being able to > stay happy, sometimes is by ignoring people who are > being rude and trying to get a " rise " out of me. I'm happy for you. Really. Pass on to your daughter how to be happy when everyone is pulling her hair and spitting on her and throwing shoes on her in the locker room. I learned to lash back from NTs. I learned that it's the only way to stay alive > The reason that I chose to post to you, is because it > seemed to me that maybe you wanted to really talk or > understand that not everyone is how you have in the > past clumped them together to be. But maybe I was > wrong. If the vast majority of neurotypicals aren't more similar than different, they've had 23 years to show me. They're taking their time. > Anyone can take anything the way that they want to and > I am not being condecending, this is how I speak to > everyone, my husband, my friends and my 4 year old > alike. If you choose to be an angry, unhappy, bitter > person than there is nothing that anyone on here can > say or do to help you and there is no point in us > trying to help you see how we feel or see things if > you don't want to and if you don't care. But just know > that in the future you may not get many responces from > people if you treat them so unkindly and if you snap > at everyone who tries to come near you or share there > opinion. " People like you don't deserve to live " (actually said to me, after a long argument about whether I was young enough to be autistic. conference. MOMA. They started the conversation.) So since Im graciously allowed to live anyway, I should have said " May God bless you " instead of " shove off, skankwad, and start packing. ASA doesn't like having it's autistics attacked? Or should I have also been greatful that she sent her 6'6 " husband to pin me against a wall and yell at me because " Im not really autistic, autistics are only children " instead of screaming in his face and stomping his foot > You said that you don't want anyone to speak to you > like you are a child, so that is why I am trying > harder to be blunt. Maybe you haven't payed attention > to this before, but many people let children get away > with everything and they agree with them and they let > them say or do or think what ever they want and they > don't call them on it, because " Oh they are just > little kids " , but with adults they have conversations > like this, where they say " you are being rude, please > curb your temper and stop the bad attitude " . So if you > want to be treated like an adult and the way the > majority of the world is treated then don't be mad at > us for posting to you and treating you like a " grown > up " . I TEACH kids. I know exactly how spoiled today's are. I also know that sometimes rudeness is required. Like when people are talking genocide as though it's a tea flavor. > If you want us to treat you like a child or a person > with a disability then we'll coddle you. OH NO. You did not go there. Adults have disabilities. It's easily possible to be disabled and damned intellegent. Take thy stereotypes to TAAP or somewhere that they're appreciated. > I too, am pretty fed up with > your insensitive, rude, and bold statements. But it's ok for NTs to be insensitive. im loving the double standards! >Until now > I have never really said a thing to you about it. You > may think that everyone jumped at you, but they are > only trying to defend themselves and are getting tired > of the negativity about any solution or hope for them > and their children in the future. THERES NOTHING AGAINST PROGRESS JUST REANIMATING PEOPLE'S BODIES WITH NEW BEINGS, SINCE THERE IS *NO SUCH THING* AS A CURED AUTISTIC. They are allowed to > hope for whatever they want to. So am I allowed to hope for a day that autistic people are something other than self narratting zoo exhibits? Nope. That's above my " station " . > As for me, I told you that my way of handling > uncomfortable situations is usually to ignore them. I > decided not to this time, to try and give you another > chance to just let it go and stop being so rude, but > if you keep up the rude nasty responses to people, I > will not read or repond to any more of those posts, > they will go in my trash been too. I learned to stand up to people for a reason. I will NOT let the death of so many kids in the name of " normal " go unnoticed. > So please, I know you have many nice and helpful > things to say, please leave this alone and accept > peoples opinions and appologies and share the opinions > you have without saying such intentionally hurtful > things to others. If you can't then I wish you well, > and will possibly respond or read your posts again, > down the road when and if you can be a little kinder. > In the meantime here are a few books and a quote that > I think may help you in your Comunication area. You > said you agree that people can get new and better > skills, so please try that. I think that people need to meet others midway. Ive done more than my share of going over to yalls side. Its YOUR TURN. And the way youre talking to me is exceptionally rude. " Im sorry you feel that way " isnt an apology at all. > Again, as somebody else said in here before " Nobody > wants to fix you Kassi " They honestly don't, not your > Autism anyway. They want you to be a little nicer and > less aggressive Find me bipolar meds that work. THatll squash the agitation and aggression. Good luck. Ive been on 25. > Nobody wants you > to be lonely, so please try. You don't know that. My roommate is perfectly happy with no one around. So was I for years and years. Better no one than bullies. > And there is one quote from the Movie " Ray " that I > really appreciated that I would like to share with you > Kassi. I am not going to be able to get it word for > word, but it his mom in the movie tells him that just > because he's blind she doesn't want him using that as > a crutch and she doesn't want him hating the world and > others because of his difference and she doesn't want > him to ever give up and let himself just become a > charity case. I thought Ray was kind of an asshole actually. *grins* Just the way he USED people. > I can tell that you are a fighter and you are not > going to give up. I can tell that even if I don't know > you and even without ever meeting you. Those are very > good attributes, but we have to learn how to find a > happy medium in every aspect of life. None of us here > want you to roll over and take crap from any body, but > we also won't do that, Ok? Fine. Be prepared for me to not take anyones crap though. That means no ones. And dont be surprised if I get fed up and leave. > So again, I am sorry for accidently using words that > have offended you. But honestly Kassi, I didn't mean > to. I'm not perfect at choosing my words either. No > one is, but we all work hard at it. Maybe in the past > we haven't had to try as hard as you, but we are not > giving up and you need to try harder right now to use > less swear words and less insults. Mixed state plus autistic frustration equals not having a good vocabulary and not caring. We would all be > happier, even you. I hope you can understand that like > I said at the end of my first letter, asking somebody > what they meant some times is a much better way to go > about communication, because then you know their > intent or what they were trying to say, if they > accidently chose poor wording. So please instead of > lashing back again, if you don't understand what I > meant than ask. And just to clarify this for you, I am > not saying that you don't understand because you are > autistic. Anyone can and does misunderstand every day. > So I just mean as a Human being, not anything else, > just ask. > Lets get past this please. I am sorry! Esther I just want people off my back about standing up for the kids. What started it was an invitation for a conference where no autistic poeple are welcome. I should be allowed to stand up to that and say " I'm not broken and neither are your kids " . I SHOULD BE. It's better than me making up fliers that say " Better dead than autistic? " with the names and modes of execution of every autistic person I can find who died of non natural causes. (yes, we've considered this). > And PS nobody likes Paris Hilton except herself. The > only reason she appears on all of everything is > because her dad has thousands and millions of money > and he pays for his selfish daughter to do whatever > she wants Heh. That's about accurate. That and the...ah....tape. Kassiane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Kassi, > Didn't say you weren't. I AM saying, however, that > ending those is more important than > changing children. These things may be more important Kassi, but as parents on this chat site, that is not our focus. We have no money and no leverage with anyone to listen to us regarding those matters. The whole purpose of this specific Yahoo group is for us to discuss Autism in Girls, not cancer or sexual abuse. Sometimes we talk about those things because they are happening in our lives or our children's lives, but our whole intent in being members of this group is to understand autism better and the health challenges that our children have that whether it is a part of autism or not, we don't know, we are here trying to find out. > Anyone looking for the genes for insulin resistance > to abort people likely to develop it? > Nope. Autism gets that honor though. And you wonder > why I am angry. As far as looking for genes to abort children, I know that maybe some people are doing that, but in my book and most of the people on this chat site's opinion(I believe) those are sick and dispicable people who would use anything to abort children. They are evil and whether it is Autism or just aborting for any reason, they don't care. They treat people like rats and just want an excuse to scare people into trusting them and their research opinions. They are like Hitler. Probably most of us agree with you on that, and so far from reading people's posts, I gather that most of us, if not all of us are against abortion for any reason either. I certainly am. It is when you lump us with those evil people by calling everyone who is not Autistic " NTs " in a derogitory manner and saying that all NTs think a certain way that has people feeling upset. > I'm happy for you. Really. Pass on to your daughter > how to be happy when everyone is > pulling her hair and spitting on her and throwing > shoes on her in the locker room. I > learned to lash back from NTs. I learned that it's > the only way to stay alive My daughters, and I have two of them will not have to endure that. Not on my watch anyway. I am homeschooling them and the only therapists that we have come over work with my husband and I, and they help us with techniques to help get our children excited about eye contact or saying words or enjoying music, etc. A few times they have worked with our girls, but i have never left the room. And the only physical interaction they have with them is when my girls climb on their laps or on their heads or try to take their jackets or shoes off of them because they want them to stay longer and play. I never allow them to restrain my children or do anything that you spoke of above. I am sorry that those things happened to you and that so many people are rude. It is not entirely because you are autistic though. My mom is not autistic, and she was beat up every day of high school, till her parents withdrew her. She was skinny, beautiful, and extremely intelligent (all the things that the media portrays that we NEED to be). There was no reason for anyone to beat her up or you, except that they are jerks and don't value human life or people's bodies or feelings, but that is not all NTs. > " People like you don't deserve to live " (actually > said to me, after a long argument about > whether I was young enough to be autistic. > conference. MOMA. They started the > conversation.) > So since Im graciously allowed to live anyway, I > should have said " May God bless you " > instead of " shove off, skankwad, and start packing. > ASA doesn't like having it's autistics > attacked? > Or should I have also been greatful that she sent > her 6'6 " husband to pin me against a wall > and yell at me because " Im not really autistic, > autistics are only children " instead of > screaming in his face and stomping his foot It honestly is terrible that you have had to endure horrible things. I am sorry that some of our society is so rude and that you have been forced to endure and be a subject to their cruelty. I am not trying to underplay what you have been through or what you are trying to prevent from happening to other children. That is wonderful that you want to help others, but maybe you need to be nicer in order to help people. For example: if someone were beaten by a man, although statistically it is more probable to be beaten by a man than a woman or child, that does not mean that ALL men are horrible and it does not mean that no women or children are mean either. It just means that it is more common for men to be mean. So if that person is to hate ALL men and tell a wonderful father of a sweet little child that he/she doesn't even know - that All men are scum! - might not be a good idea. Because even though that dad is wonderful, he is going to feel defensive. He wouldn't know what that angry individual had been through or why he/she was saying mean stuff about men. The father would think that he/she didn't like him and were accusing him of things he has never done and maybe never even thought of or heard of. No one is going to be able to hear a message, when they feel that they have to be busy defending themselves. That is honestly why I am still writing to you. Because I realize that you are trying to share a message or opinion with us and you and I and many other people on this group are just so busy defending ourselves and trying to stand up for ourselves that we are not able to understand or hear what you are trying to share with us. So I want to hear your message and understand what it is you are so passionate about and why you are pushing so hard for a cause, that many of us aren't even really sure what cause you are trying to stand up for. It seems that you are worried that we are all going to go kill our kids and destroy their self esteem, but since to me that is not even a consideration and I don't understand where you are coming from exactly, I am trying to. I want to understand why you feel like we all want to destroy or get rid of our children. That will help us be more sensative and understanding of our little ones. I am sure that we must have used the wrong wording or something that caused this misunderstanding, but instead of us continuing to fight and defend ourselves, why don't you please try again to explain what you meant about the TAAP people and why we should be weary of them. Please try to not label them as NTs. Call them the TAAP people or the Abortionists or some other name that doesn't group us with them and that would really help us to all see more clearly what you are saying without us having to feel so defensive, like you are beating us up with words. P.s. I'm not sure if that makes sence or not, but I'm trying. and when I say that " I'm not sure if something makes sence " , I don't mean that I think you don't understand, I am not at all placing the comprehention of what I am saying on the reader. I ask that all the time of everyone I correspond with, because people frquently say " what did you mean? " So I know that I have difficulty sometimes getting things across the way that I intend for them to come across. That's all. > I also know that sometimes rudeness is required. > Like when people are talking genocide as > though it's a tea flavor. Maybe you think that I am the stupid one, since you keep going off about how high your IQ is, but I have no idea what this means or what you are trying to say here (directly above). So I will not comment on it, unless it is important enough to you for you to explain to me what you mean by this and also the other day when you said to someone something about wanting to take a white hood back. I don't know what you are talking about on either of these statements, but I'm sorry about whatever you are mad about. For somebody who has been mistreated because of communication delay, you are not very understanding of anyone else who has issues with communication. I've told you like six times in the past couple days, that I am trying my hardest to be nice and understand you and speak to you in the same way that I talk to everyone and you keep saying that I am talking to you like you are 3 or 4. To me that feels like you are telling me that I am 3 or 4, because this is the way that I communicate and the only way I know how to, so please if you are so smart, and I am the stupid 4 year old. Then try to be the grown up and be a little nicer and stop reading things into my words that are not there. I am not like the " NTs " you speak of. I do not think like them and I do not add things to my words in implying or meaning something. If I was trying to do that, I would tell you. I tell people what I mean. I am not a person who uses quaint little phrases and says, " Oh come over any time " and then shuts the door and says to her husband " I hate that lady, she better never come over " . I am the kind that tries to say everything that I mean and tries to understand all that others mean too. When I am upset, I say, " I am upset " You may think I am being rude, but I am trying very hard to just be honest and to get you to tell us what you are so mad about instead of getting so angry and name calling. I don't like anybody to have to hurt. Not me, and not others. The rest of the things I will not go into detail on. You obviousely are missing the point of what I was trying to say, by the things you responded to me in the last part of the letter, and I don't want to fight about things. I have never even read any of the stuff from TAAP, it's too long and I have no idea what they are talking about, so why would I talk to them or " take it to them? " So lets not fight about that anymore. Please again, if you want to say your opinion about TAAP or things that you are concerned about or whatever, say it, but don't point fingers at us when you don't even know us. What I said has nothing to do with Autism or NTs, it is what I would ask anyone to do, if they were snapping and yelling at everyone and pointing fingers. You mentioned that you wanted me to put you on a different medication and that you have tried 25. I am sorry that you haven't found one that works for you. I can't help you with that. I wish I could, but I don't have a clue about it, and I have way too many things to worry about and too many ill people in my family (Not talking about Autism so don't freak out) to worry about finding you a medicine. I can't even find medicine that works for me and I can't even help my husband who is extremely ill and near death with his crohn's right now, or my daughter who they thought has Leukemia and they can't figure out whats a matter with her. Thank you for trying a little harder this last letter to explain yourself instead of just being rude. I certainly can handle listening to others opinions and I want to hear yours and evryones, but please continue to try a little harder and be nicer. You just very well may be able to help the world see things your way and help with whatever cause you have, if you go about it in a different way. Sondra is the perfect example of this, for me anyway. I love her posts and I always want to hear what she has to say, because she tries very hard to say things in a way that won't affend anyone and she doesn't add implied stuff in there to hurt people's feelings. She has a lot to say and does well with her method of sharing with others. That doesn't mean you have to be just like her, it just means that " You can attract a lot more flies with Honey, than Vinegar " . So if you want us or others to hear your message or opinions, please don't accuse us, when you don't even know us. I am waiting to hear about your cause that you feel so strongly about and want to put up posters for. Thanks, Esther (Who has been a mom of two very ill little girls who were in the hospital when I got them - age 2 and age 4 months - and wish that I could help more people, but am concerned about my children and Hubby right now, first and foremost) I think it is great that you want to be a mom and if you need any info on getting started or who to talk to, I'd be happy to help. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 If I may offer some solace. Kassi, I understand your pain all too well. It hurts and we seem to continue getting hurt as autism is seemingly ripped apart and dissected as if it were a cancerous growth. But I have learned that in every good there is an opposite bad, and I have to decide upon which I am going to focus. I have to focus on the good and put aside the bad. The bad eventually fizzles out. Remember when America first learned of AIDS? All the negative press and presumptions! They were calling it the " Gay disease! " The gay population was devastated and had their lifestyles picked apart by America as a whole. But one little boy, I believe his name was White, showed America that their fears developed into prejudice by calling AIDS a " Gay disease " and gave his life for that. So, autism is not a terminal disease, but the point I am making is that the press and the medical society does not always see what is right. There are only two ways which I can see myself daily, my mirror image and my shadow. But others around me can see me three ways, my mirror image, my shadow or looking directly upon me. Other people can see us from behind, from our side or upside down and because of that it takes other people to let us know our tag is sticking out of our shirt or we have something stuck to our pants. We see our autism much the same way. We see our mirror image and our shadow, but we cannot see ourselves the way others see us from their NT point of view. This has a good and a bad. The bad is that many can be prejudice. Yet the good is that NT's can help us to see their world. If we show NT's our mirror images and our shadows they can compare it to what they see and help translate for us. (by the way, I have always used the mirror image as the things I like about myself, and my shadow as the things I do not like). There will be times when the NT world misinterprets. I mean, for goodness sakes, many NT's have to read books just to learn to talk to one another much less understand autistics! LOL. So anyway, I try and remember that there is always good out of adversity. Otherwise, why fight at all? Esther, I do appreciate all you do and all you sacrifice for people like me. I hope this brings peace to you. Nadine Re: Re: Kassi I'm Sorry Kassi, > Didn't say you weren't. I AM saying, however, that > ending those is more important than > changing children. These things may be more important Kassi, but as parents on this chat site, that is not our focus. We have no money and no leverage with anyone to listen to us regarding those matters. The whole purpose of this specific Yahoo group is for us to discuss Autism in Girls, not cancer or sexual abuse. Sometimes we talk about those things because they are happening in our lives or our children's lives, but our whole intent in being members of this group is to understand autism better and the health challenges that our children have that whether it is a part of autism or not, we don't know, we are here trying to find out. > Anyone looking for the genes for insulin resistance > to abort people likely to develop it? > Nope. Autism gets that honor though. And you wonder > why I am angry. As far as looking for genes to abort children, I know that maybe some people are doing that, but in my book and most of the people on this chat site's opinion(I believe) those are sick and dispicable people who would use anything to abort children. They are evil and whether it is Autism or just aborting for any reason, they don't care. They treat people like rats and just want an excuse to scare people into trusting them and their research opinions. They are like Hitler. Probably most of us agree with you on that, and so far from reading people's posts, I gather that most of us, if not all of us are against abortion for any reason either. I certainly am. It is when you lump us with those evil people by calling everyone who is not Autistic " NTs " in a derogitory manner and saying that all NTs think a certain way that has people feeling upset. > I'm happy for you. Really. Pass on to your daughter > how to be happy when everyone is > pulling her hair and spitting on her and throwing > shoes on her in the locker room. I > learned to lash back from NTs. I learned that it's > the only way to stay alive My daughters, and I have two of them will not have to endure that. Not on my watch anyway. I am homeschooling them and the only therapists that we have come over work with my husband and I, and they help us with techniques to help get our children excited about eye contact or saying words or enjoying music, etc. A few times they have worked with our girls, but i have never left the room. And the only physical interaction they have with them is when my girls climb on their laps or on their heads or try to take their jackets or shoes off of them because they want them to stay longer and play. I never allow them to restrain my children or do anything that you spoke of above. I am sorry that those things happened to you and that so many people are rude. It is not entirely because you are autistic though. My mom is not autistic, and she was beat up every day of high school, till her parents withdrew her. She was skinny, beautiful, and extremely intelligent (all the things that the media portrays that we NEED to be). There was no reason for anyone to beat her up or you, except that they are jerks and don't value human life or people's bodies or feelings, but that is not all NTs. > " People like you don't deserve to live " (actually > said to me, after a long argument about > whether I was young enough to be autistic. > conference. MOMA. They started the > conversation.) > So since Im graciously allowed to live anyway, I > should have said " May God bless you " > instead of " shove off, skankwad, and start packing. > ASA doesn't like having it's autistics > attacked? > Or should I have also been greatful that she sent > her 6'6 " husband to pin me against a wall > and yell at me because " Im not really autistic, > autistics are only children " instead of > screaming in his face and stomping his foot It honestly is terrible that you have had to endure horrible things. I am sorry that some of our society is so rude and that you have been forced to endure and be a subject to their cruelty. I am not trying to underplay what you have been through or what you are trying to prevent from happening to other children. That is wonderful that you want to help others, but maybe you need to be nicer in order to help people. For example: if someone were beaten by a man, although statistically it is more probable to be beaten by a man than a woman or child, that does not mean that ALL men are horrible and it does not mean that no women or children are mean either. It just means that it is more common for men to be mean. So if that person is to hate ALL men and tell a wonderful father of a sweet little child that he/she doesn't even know - that All men are scum! - might not be a good idea. Because even though that dad is wonderful, he is going to feel defensive. He wouldn't know what that angry individual had been through or why he/she was saying mean stuff about men. The father would think that he/she didn't like him and were accusing him of things he has never done and maybe never even thought of or heard of. No one is going to be able to hear a message, when they feel that they have to be busy defending themselves. That is honestly why I am still writing to you. Because I realize that you are trying to share a message or opinion with us and you and I and many other people on this group are just so busy defending ourselves and trying to stand up for ourselves that we are not able to understand or hear what you are trying to share with us. So I want to hear your message and understand what it is you are so passionate about and why you are pushing so hard for a cause, that many of us aren't even really sure what cause you are trying to stand up for. It seems that you are worried that we are all going to go kill our kids and destroy their self esteem, but since to me that is not even a consideration and I don't understand where you are coming from exactly, I am trying to. I want to understand why you feel like we all want to destroy or get rid of our children. That will help us be more sensative and understanding of our little ones. I am sure that we must have used the wrong wording or something that caused this misunderstanding, but instead of us continuing to fight and defend ourselves, why don't you please try again to explain what you meant about the TAAP people and why we should be weary of them. Please try to not label them as NTs. Call them the TAAP people or the Abortionists or some other name that doesn't group us with them and that would really help us to all see more clearly what you are saying without us having to feel so defensive, like you are beating us up with words. P.s. I'm not sure if that makes sence or not, but I'm trying. and when I say that " I'm not sure if something makes sence " , I don't mean that I think you don't understand, I am not at all placing the comprehention of what I am saying on the reader. I ask that all the time of everyone I correspond with, because people frquently say " what did you mean? " So I know that I have difficulty sometimes getting things across the way that I intend for them to come across. That's all. > I also know that sometimes rudeness is required. > Like when people are talking genocide as > though it's a tea flavor. Maybe you think that I am the stupid one, since you keep going off about how high your IQ is, but I have no idea what this means or what you are trying to say here (directly above). So I will not comment on it, unless it is important enough to you for you to explain to me what you mean by this and also the other day when you said to someone something about wanting to take a white hood back. I don't know what you are talking about on either of these statements, but I'm sorry about whatever you are mad about. For somebody who has been mistreated because of communication delay, you are not very understanding of anyone else who has issues with communication. I've told you like six times in the past couple days, that I am trying my hardest to be nice and understand you and speak to you in the same way that I talk to everyone and you keep saying that I am talking to you like you are 3 or 4. To me that feels like you are telling me that I am 3 or 4, because this is the way that I communicate and the only way I know how to, so please if you are so smart, and I am the stupid 4 year old. Then try to be the grown up and be a little nicer and stop reading things into my words that are not there. I am not like the " NTs " you speak of. I do not think like them and I do not add things to my words in implying or meaning something. If I was trying to do that, I would tell you. I tell people what I mean. I am not a person who uses quaint little phrases and says, " Oh come over any time " and then shuts the door and says to her husband " I hate that lady, she better never come over " . I am the kind that tries to say everything that I mean and tries to understand all that others mean too. When I am upset, I say, " I am upset " You may think I am being rude, but I am trying very hard to just be honest and to get you to tell us what you are so mad about instead of getting so angry and name calling. I don't like anybody to have to hurt. Not me, and not others. The rest of the things I will not go into detail on. You obviousely are missing the point of what I was trying to say, by the things you responded to me in the last part of the letter, and I don't want to fight about things. I have never even read any of the stuff from TAAP, it's too long and I have no idea what they are talking about, so why would I talk to them or " take it to them? " So lets not fight about that anymore. Please again, if you want to say your opinion about TAAP or things that you are concerned about or whatever, say it, but don't point fingers at us when you don't even know us. What I said has nothing to do with Autism or NTs, it is what I would ask anyone to do, if they were snapping and yelling at everyone and pointing fingers. You mentioned that you wanted me to put you on a different medication and that you have tried 25. I am sorry that you haven't found one that works for you. I can't help you with that. I wish I could, but I don't have a clue about it, and I have way too many things to worry about and too many ill people in my family (Not talking about Autism so don't freak out) to worry about finding you a medicine. I can't even find medicine that works for me and I can't even help my husband who is extremely ill and near death with his crohn's right now, or my daughter who they thought has Leukemia and they can't figure out whats a matter with her. Thank you for trying a little harder this last letter to explain yourself instead of just being rude. I certainly can handle listening to others opinions and I want to hear yours and evryones, but please continue to try a little harder and be nicer. You just very well may be able to help the world see things your way and help with whatever cause you have, if you go about it in a different way. Sondra is the perfect example of this, for me anyway. I love her posts and I always want to hear what she has to say, because she tries very hard to say things in a way that won't affend anyone and she doesn't add implied stuff in there to hurt people's feelings. She has a lot to say and does well with her method of sharing with others. That doesn't mean you have to be just like her, it just means that " You can attract a lot more flies with Honey, than Vinegar " . So if you want us or others to hear your message or opinions, please don't accuse us, when you don't even know us. I am waiting to hear about your cause that you feel so strongly about and want to put up posters for. Thanks, Esther (Who has been a mom of two very ill little girls who were in the hospital when I got them - age 2 and age 4 months - and wish that I could help more people, but am concerned about my children and Hubby right now, first and foremost) I think it is great that you want to be a mom and if you need any info on getting started or who to talk to, I'd be happy to help. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Very well put, . You're so eloquent, WOW! Diane ('s Mom) Re: Re: Kassi I'm Sorry Kassi, > Didn't say you weren't. I AM saying, however, that > ending those is more important than > changing children. These things may be more important Kassi, but as parents on this chat site, that is not our focus. We have no money and no leverage with anyone to listen to us regarding those matters. The whole purpose of this specific Yahoo group is for us to discuss Autism in Girls, not cancer or sexual abuse. Sometimes we talk about those things because they are happening in our lives or our children's lives, but our whole intent in being members of this group is to understand autism better and the health challenges that our children have that whether it is a part of autism or not, we don't know, we are here trying to find out. > Anyone looking for the genes for insulin resistance > to abort people likely to develop it? > Nope. Autism gets that honor though. And you wonder > why I am angry. As far as looking for genes to abort children, I know that maybe some people are doing that, but in my book and most of the people on this chat site's opinion(I believe) those are sick and dispicable people who would use anything to abort children. They are evil and whether it is Autism or just aborting for any reason, they don't care. They treat people like rats and just want an excuse to scare people into trusting them and their research opinions. They are like Hitler. Probably most of us agree with you on that, and so far from reading people's posts, I gather that most of us, if not all of us are against abortion for any reason either. I certainly am. It is when you lump us with those evil people by calling everyone who is not Autistic " NTs " in a derogitory manner and saying that all NTs think a certain way that has people feeling upset. > I'm happy for you. Really. Pass on to your daughter > how to be happy when everyone is > pulling her hair and spitting on her and throwing > shoes on her in the locker room. I > learned to lash back from NTs. I learned that it's > the only way to stay alive My daughters, and I have two of them will not have to endure that. Not on my watch anyway. I am homeschooling them and the only therapists that we have come over work with my husband and I, and they help us with techniques to help get our children excited about eye contact or saying words or enjoying music, etc. A few times they have worked with our girls, but i have never left the room. And the only physical interaction they have with them is when my girls climb on their laps or on their heads or try to take their jackets or shoes off of them because they want them to stay longer and play. I never allow them to restrain my children or do anything that you spoke of above. I am sorry that those things happened to you and that so many people are rude. It is not entirely because you are autistic though. My mom is not autistic, and she was beat up every day of high school, till her parents withdrew her. She was skinny, beautiful, and extremely intelligent (all the things that the media portrays that we NEED to be). There was no reason for anyone to beat her up or you, except that they are jerks and don't value human life or people's bodies or feelings, but that is not all NTs. > " People like you don't deserve to live " (actually > said to me, after a long argument about > whether I was young enough to be autistic. > conference. MOMA. They started the > conversation.) > So since Im graciously allowed to live anyway, I > should have said " May God bless you " > instead of " shove off, skankwad, and start packing. > ASA doesn't like having it's autistics > attacked? > Or should I have also been greatful that she sent > her 6'6 " husband to pin me against a wall > and yell at me because " Im not really autistic, > autistics are only children " instead of > screaming in his face and stomping his foot It honestly is terrible that you have had to endure horrible things. I am sorry that some of our society is so rude and that you have been forced to endure and be a subject to their cruelty. I am not trying to underplay what you have been through or what you are trying to prevent from happening to other children. That is wonderful that you want to help others, but maybe you need to be nicer in order to help people. For example: if someone were beaten by a man, although statistically it is more probable to be beaten by a man than a woman or child, that does not mean that ALL men are horrible and it does not mean that no women or children are mean either. It just means that it is more common for men to be mean. So if that person is to hate ALL men and tell a wonderful father of a sweet little child that he/she doesn't even know - that All men are scum! - might not be a good idea. Because even though that dad is wonderful, he is going to feel defensive. He wouldn't know what that angry individual had been through or why he/she was saying mean stuff about men. The father would think that he/she didn't like him and were accusing him of things he has never done and maybe never even thought of or heard of. No one is going to be able to hear a message, when they feel that they have to be busy defending themselves. That is honestly why I am still writing to you. Because I realize that you are trying to share a message or opinion with us and you and I and many other people on this group are just so busy defending ourselves and trying to stand up for ourselves that we are not able to understand or hear what you are trying to share with us. So I want to hear your message and understand what it is you are so passionate about and why you are pushing so hard for a cause, that many of us aren't even really sure what cause you are trying to stand up for. It seems that you are worried that we are all going to go kill our kids and destroy their self esteem, but since to me that is not even a consideration and I don't understand where you are coming from exactly, I am trying to. I want to understand why you feel like we all want to destroy or get rid of our children. That will help us be more sensative and understanding of our little ones. I am sure that we must have used the wrong wording or something that caused this misunderstanding, but instead of us continuing to fight and defend ourselves, why don't you please try again to explain what you meant about the TAAP people and why we should be weary of them. Please try to not label them as NTs. Call them the TAAP people or the Abortionists or some other name that doesn't group us with them and that would really help us to all see more clearly what you are saying without us having to feel so defensive, like you are beating us up with words. P.s. I'm not sure if that makes sence or not, but I'm trying. and when I say that " I'm not sure if something makes sence " , I don't mean that I think you don't understand, I am not at all placing the comprehention of what I am saying on the reader. I ask that all the time of everyone I correspond with, because people frquently say " what did you mean? " So I know that I have difficulty sometimes getting things across the way that I intend for them to come across. That's all. > I also know that sometimes rudeness is required. > Like when people are talking genocide as > though it's a tea flavor. Maybe you think that I am the stupid one, since you keep going off about how high your IQ is, but I have no idea what this means or what you are trying to say here (directly above). So I will not comment on it, unless it is important enough to you for you to explain to me what you mean by this and also the other day when you said to someone something about wanting to take a white hood back. I don't know what you are talking about on either of these statements, but I'm sorry about whatever you are mad about. For somebody who has been mistreated because of communication delay, you are not very understanding of anyone else who has issues with communication. I've told you like six times in the past couple days, that I am trying my hardest to be nice and understand you and speak to you in the same way that I talk to everyone and you keep saying that I am talking to you like you are 3 or 4. To me that feels like you are telling me that I am 3 or 4, because this is the way that I communicate and the only way I know how to, so please if you are so smart, and I am the stupid 4 year old. Then try to be the grown up and be a little nicer and stop reading things into my words that are not there. I am not like the " NTs " you speak of. I do not think like them and I do not add things to my words in implying or meaning something. If I was trying to do that, I would tell you. I tell people what I mean. I am not a person who uses quaint little phrases and says, " Oh come over any time " and then shuts the door and says to her husband " I hate that lady, she better never come over " . I am the kind that tries to say everything that I mean and tries to understand all that others mean too. When I am upset, I say, " I am upset " You may think I am being rude, but I am trying very hard to just be honest and to get you to tell us what you are so mad about instead of getting so angry and name calling. I don't like anybody to have to hurt. Not me, and not others. The rest of the things I will not go into detail on. You obviousely are missing the point of what I was trying to say, by the things you responded to me in the last part of the letter, and I don't want to fight about things. I have never even read any of the stuff from TAAP, it's too long and I have no idea what they are talking about, so why would I talk to them or " take it to them? " So lets not fight about that anymore. Please again, if you want to say your opinion about TAAP or things that you are concerned about or whatever, say it, but don't point fingers at us when you don't even know us. What I said has nothing to do with Autism or NTs, it is what I would ask anyone to do, if they were snapping and yelling at everyone and pointing fingers. You mentioned that you wanted me to put you on a different medication and that you have tried 25. I am sorry that you haven't found one that works for you. I can't help you with that. I wish I could, but I don't have a clue about it, and I have way too many things to worry about and too many ill people in my family (Not talking about Autism so don't freak out) to worry about finding you a medicine. I can't even find medicine that works for me and I can't even help my husband who is extremely ill and near death with his crohn's right now, or my daughter who they thought has Leukemia and they can't figure out whats a matter with her. Thank you for trying a little harder this last letter to explain yourself instead of just being rude. I certainly can handle listening to others opinions and I want to hear yours and evryones, but please continue to try a little harder and be nicer. You just very well may be able to help the world see things your way and help with whatever cause you have, if you go about it in a different way. Sondra is the perfect example of this, for me anyway. I love her posts and I always want to hear what she has to say, because she tries very hard to say things in a way that won't affend anyone and she doesn't add implied stuff in there to hurt people's feelings. She has a lot to say and does well with her method of sharing with others. That doesn't mean you have to be just like her, it just means that " You can attract a lot more flies with Honey, than Vinegar " . So if you want us or others to hear your message or opinions, please don't accuse us, when you don't even know us. I am waiting to hear about your cause that you feel so strongly about and want to put up posters for. Thanks, Esther (Who has been a mom of two very ill little girls who were in the hospital when I got them - age 2 and age 4 months - and wish that I could help more people, but am concerned about my children and Hubby right now, first and foremost) I think it is great that you want to be a mom and if you need any info on getting started or who to talk to, I'd be happy to help. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Esther, I am not sure what you are apologizing for. The way I see it - - you have some very functional, talented, intelligent and very capable people on this list and out there in the world who have all been diagnosed as having autism. I am fine by that. " Different way of thinking! Different way of being! It's not wrong to be different! " they say. I wholeheartedly agree. But take you, Kassi... and put you into my home, or other homes with even worse cases, and try and tell me I should not try and fix what's wrong with this picture. Tell me that someone should WANT to live with a child who can't manage to go to the toilet to poop at age 15, or tell me that mom should let them 7 year old son bang their head into a wall because the toast was altogether wrong. Silly examples, perhaps, but there are a lot worse, too. If you want to call them the " unfortunate side effects " of autism instead of autism, if you want to label it as something else in order to avoid the malignancy attached to the word, condition, affliction, state, or way of being that autism is so that you yourself don't get lumped into the assumably irrational urge these parents have to change their " otherwise perfectly normal " kids - go right ahead as I could care less what you call it. It's real and there is very little that is GREAT about it, or good, or even bearable. NO parent, autistic or otherwise, should have to watch their child fall apart and not be able to help them. No parent should have to live, knowing that a day will come soon when she herself cannot handle raising this child in the home because of the danger she presents to herself and the rest of the family. Yes, it happens all the time all over the world, it doesn't make it right. No child should have to live with a parent who is consumed by that fear, and no child should have to be looked upon the way that many disabled children are. Yes, disabled. When you can't go to the bathroom by yourself, when you can't function within society as it is, when you can't speak, when you can't communicate, when you can't understand the world around you - - it's a disability, and an affliction, Kassi. When the lack of being able to understand the world as it is ends up frustrating you, angering you, and changes your reaction to the world on account of that itty bitty difference - - it's a disability, no matter the size of the vocabulary. ly, given your diagnosis, I am truly in awe of the way you can communicate. If I thought there was on iota of a chance that in 10 years, 20 years or even 30 years that my child would have half your vocabulary - - - I'd sacrifice my life, on the spot. But when that is the KIND of autism YOU have, and you're able to tell someone off due to the way you feel, and stand up for yourself because you're angry and sick of it - - then you cannot possibly understand or sympathize how the mom of a 5 year old child who has yet to look into someone's eyes might feel, especially given your diagnosis. You can legitimately claim, " It's a way of being, don't try to change us " when you can wipe your own butt after going to the bathroom but have no place in telling the parents of those less fortunate than yourself that they have no right or business in doing what they feel they need to do. You can't possibly tell them not to try any and every pseudo-therapy, fluke ideas, and ridiculous theories out there to hopefully try and help that child become a fraction of who you are. I, personally, gave up on all of therapies and " cures " a long time ago, calling them quack theories in my mind, and accepting the situation for what it is. I have two kids whom I cherish, and in spite of effort, love, work, research, prayer and what have you - - my life is what it is. That was the right decision, for ME, and even I cannot tell the other parents that what they are doing, even if I do think it's grasping at straws, even if I do think it might be more harmful than good, is WRONG. It's not wrong, it's their way of survival, kid. I will fight my ass off to make sure they get their education to the best of their ability, and ensure that I use every resource I have to make sure it is geared for them specifically. Now, as I sit here with my marriage falling apart, and fully realizing that one of my kids will soon have to be put into a home as the rest of us cannot live anything remotely resembling " a life " on account of her, whom I love so painfully much - - I still look for only peace and hope to find a new life. I have no idea how, and I have no idea if it can happen, but these are decisions I would not have wished on my worst enemy. If I should try a therapy so that I might avoid this huge hurdle before me, far be it for you to tell me it's wrong, or that it's just her way of " being " . There is nothing glorious, fun, or worthwhile about having your own parent drop you off at a facility because they can no longer raise you. YOU WROTE: >>>>>>>>>>>>>>>>>>>> uhhuh. it is. I didn't need the condescension. Y'all seem to avoid the points that 1. at an autism conference, where the hell are the autistic people? and 2. AUTISM PARENTS DON'T HAVE A MONOPOLY ON HARD LIVES. Guess what? over 90% of autistic people are sexually abused. Uh-huh. Get angry about that one and change that for a while. <<<<<<<<<<<<<<<<<<<< The majority of the autistic population, yourself excepted, were at home with paid caretakers so their parents and family members could come and gather to further learn on how to live their lives, make it better, and where to go next. They're home because they have no means of understanding what the speakers are talking about, they don't have sufficient vocabulary to comprehend, and because if they came - - the rest of the people attending would be the first one to claim they cannot hear the speaker. As for the monopoly we have on life being hard.... it's hard because we spend it trying to avoid and prevent situations in which our children might get sexually abused or hurt, or otherwise misunderstood, or destroyed on account of their disabilities. It's not easy being an individual yourself, but having a legal, emotional, spiritual and physical responsibility and connection to a child who cannot defend herself from the abuse you mention and having to spend your life, as you know it, preventing just that - - - not to mention knowing you will have to spend the rest of your days doing just that if something doesn't give. If 90% of the autistic population is being sexually abused, and you don't want to call it an affliction, or suffering, or disability or anything that might have a less than positive inference - - then I don't know WHAT is an actual disability. When the majority of the autistic people in the community cannot function at your level and can barely communicate or make their thoughts known --- perhaps it is YOU that needs to opt for a different diagnosis at least in name, because there is simply no way you will convince anyone who has done what I've had to do for 8 years now that this is merely a case in which I must teach the child to live in the world, or that all I needed to do was, in your own words: " Teaching self advocacy and independance skill is a better way to achieve an independant, or semi independant, life for autistic people than trying to rewire them is. " No, autism is not terminal and it is not " sick " in the way diabetes or cancer is. Yea - they're not dead so we should thank our lucky stars. But " SICK " is anything that is not well, and damn me for saying this, but something is not well about a child who felt compelled to drown a kitten not because they are a sociopath, but because they didn't understand, or a child whose scars on his forehead cannot heal because it's never given a chance to heal in between him banging it on the ground or the wall or the concrete. That is neither sound nor stable, and by my definition, is sickness. You don't have to die from something for you to be sick. You go tell that kid and that parent that autism " ain't that bad " . And if you don't want to be talked down to - - then perhaps you start acting like an adult yourself. Knowing you are in your manic phase but continuing to spew out words to others just to be hurtful has nothing do with autism or being bipolar, kid. It's got everything to do with being angry and not being able to deal with that anger in a rational, mature manner. By definition, that is exactly what is referred to as a " tantrum " . Grace >> Kassi I'm Sorry >> >>Kassi, >>I was not talking to you as a 4 year old. I was talking to >>you as I would talk to any friend or family that I knew was >>frusterated and was trying to help them to know from my words >>and tone that I was not angry and was trying to be calm and >>allow myself to find the right words that would not hurt or >>frusterate anyone. >>You are right that I do not know you, but you also do not >>know me any better than I know you. Do you think that people >>here do not know that there is sexual abuse and many other >>illnesses out there? Do you think that we are not concerned >>about those? >>well it sounded like that is what you think from what you >>said, and first off at least half of us on this group are in >>that 90% you spoke of having been sexually abused or at very >>least are trying to help our loved ones who have or are still >>being abused. >>Most of us on here struggle with many of our own health >>issues. We have diabetes, insulin resistance, depression, Bi >>polar disorder, Crohn's disease, some of us here probably >>even have cancer. And we are not freaking out and getting so >>defensive over what everybody else says about these topics. >>Kassi I am sorry. I already appologized that you are >>affended, but just because you have an opinion does not mean >>others are not entitled to one or to contradict yours. That >>is the way of a FREE country. >>If you don't like it move somewhere else and get told what to >>do in every aspect of your life by a dictator. >>People are allowed to an opinion in a free world, even if it >>is a bad opinion. If you don't like other's voicing there >>opinions and thoughts then don't read their posts. It is as >>simple as that. >>I have a father who is very rude and condecending to me and >>has been all my life. He writes me e-mails on a regular >>basis. Some of them are nice, some of them are very rude. I >>could block his e-mail, but I enjoy some of the nice e-mails >>he sends and I love him, so therefore when I get an e-mail >>from him then I scim through it before reading it thoroughly. >>I do this because if I read it thoroughly, then I might hate >>him again and not be able to respond politely and I might >>never speak to him again. So if there are things that seem >>negative and like I won't enjoy the letter then I throw it >>away to the trash bin. >>You or any one can judge me all they want and say I should do >>this or that or that's not how they do it. >>Fine, but the reason I mentioned it is because I am the one >>who chooses whether or not I will be happy, not you or any >>one on this post, not my parents, not my past, not anyone and >>so my method of being able to stay happy, sometimes is by >>ignoring people who are being rude and trying to get a " rise " >>out of me. >>The reason that I chose to post to you, is because it seemed >>to me that maybe you wanted to really talk or understand that >>not everyone is how you have in the past clumped them >>together to be. But maybe I was wrong. >>Anyone can take anything the way that they want to and I am >>not being condecending, this is how I speak to everyone, my >>husband, my friends and my 4 year old alike. If you choose to >>be an angry, unhappy, bitter person than there is nothing >>that anyone on here can say or do to help you and there is no >>point in us trying to help you see how we feel or see things >>if you don't want to and if you don't care. But just know >>that in the future you may not get many responces from people >>if you treat them so unkindly and if you snap at everyone who >>tries to come near you or share there opinion. >>You said that you don't want anyone to speak to you like you >>are a child, so that is why I am trying harder to be blunt. >>Maybe you haven't payed attention to this before, but many >>people let children get away with everything and they agree >>with them and they let them say or do or think what ever they >>want and they don't call them on it, because " Oh they are >>just little kids " , but with adults they have conversations >>like this, where they say " you are being rude, please curb >>your temper and stop the bad attitude " . So if you want to be >>treated like an adult and the way the majority of the world >>is treated then don't be mad at us for posting to you and >>treating you like a " grown up " . >>If you want us to treat you like a child or a person with a >>disability then we'll coddle you. Take your pick! You don't >>get both. I too, am pretty fed up with your insensitive, >>rude, and bold statements. Until now I have never really said >>a thing to you about it. You may think that everyone jumped >>at you, but they are only trying to defend themselves and are >>getting tired of the negativity about any solution or hope >>for them and their children in the future. They are allowed >>to hope for whatever they want to. And not one of us is going >>to ever do anything to try and harm our children. Why do you >>think we are always on here asking you and Sondra and >>and everyones advice or opinions. We are trying to make the >>best most infomative decision possible for our babies. They >>are not old enough to make these decisions yet regardless of >>their Autism or not, even if you are. >>As for me, I told you that my way of handling uncomfortable >>situations is usually to ignore them. I decided not to this >>time, to try and give you another chance to just let it go >>and stop being so rude, but if you keep up the rude nasty >>responses to people, I will not read or repond to any more of >>those posts, they will go in my trash been too. >>So please, I know you have many nice and helpful things to >>say, please leave this alone and accept peoples opinions and >>appologies and share the opinions you have without saying >>such intentionally hurtful things to others. If you can't >>then I wish you well, and will possibly respond or read your >>posts again, down the road when and if you can be a little kinder. >>In the meantime here are a few books and a quote that I think >>may help you in your Comunication area. You said you agree >>that people can get new and better skills, so please try that. >>Again, as somebody else said in here before " Nobody wants to >>fix you Kassi " They honestly don't, not your Autism anyway. >>They want you to be a little nicer and less aggressive and >>yah there are people who have those personalities without >>being autistic and they are called " Scrooge " and nobody likes >>them. But people can change their personalities too, and in >>any kind of relationship you have to work on your personality >>little by little to get along with others, or you will end up >>a charity case or very lonely. Nobody wants you to be lonely, >>so please try. >>One book that has really helped me in dealing with my own and >>others personality and communication issues is called " How to >>Hug a porcupine " by Lund and the other is " When >>bad things happen to good people " >>by I think the guys last name is Kushner or somthing. >>I don't know if you are religeous or not or what your >>religion is, but he is a Jewish Rabi. I am not jewish at all, >>but he is not preachy and his book is not about religion, it >>is about hardships that humans must face and learn to overcome. >>And there is one quote from the Movie " Ray " that I really >>appreciated that I would like to share with you Kassi. I am >>not going to be able to get it word for word, but it his mom >>in the movie tells him that just because he's blind she >>doesn't want him using that as a crutch and she doesn't want >>him hating the world and others because of his difference and >>she doesn't want him to ever give up and let himself just >>become a charity case. >>I can tell that you are a fighter and you are not going to >>give up. I can tell that even if I don't know you and even >>without ever meeting you. Those are very good attributes, but >>we have to learn how to find a happy medium in every aspect >>of life. None of us here want you to roll over and take crap >>from any body, but we also won't do that, Ok? >>So again, I am sorry for accidently using words that have >>offended you. But honestly Kassi, I didn't mean to. I'm not >>perfect at choosing my words either. No one is, but we all >>work hard at it. Maybe in the past we haven't had to try as >>hard as you, but we are not giving up and you need to try >>harder right now to use less swear words and less insults. We >>would all be happier, even you. I hope you can understand >>that like I said at the end of my first letter, asking >>somebody what they meant some times is a much better way to >>go about communication, because then you know their intent or >>what they were trying to say, if they accidently chose poor >>wording. So please instead of lashing back again, if you >>don't understand what I meant than ask. And just to clarify >>this for you, I am not saying that you don't understand >>because you are autistic. Anyone can and does misunderstand every day. >>So I just mean as a Human being, not anything else, just ask. >>Lets get past this please. I am sorry! Esther >> >>And PS nobody likes Paris Hilton except herself. The only >>reason she appears on all of everything is because her dad >>has thousands and millions of money and he pays for his >>selfish daughter to do whatever >>she wants >> >>--- kassihatestwistin >>wrote: >> >>> >>> > >>> > Thank you Tina for saying that. Kassi, I too am >>> sorry >>> > that maybe your parents did not try as hard as >>> some of >>> > us parents are trying and maybe they did and they >>> just >>> > did not have the recourses that are available to >>> us >>> > today, >>> >>> a. and b. But given that I have a friend with SEVERE PTSD from ABA >>> (adult. one of the original " indistinguishable from peers.) I think >>> I'll stick with what I got, minus the peer abuse. Thanks anyway. >>> >>> >but I watch my daughters crying and screaming and hurting >>themselves >>> >because they don't know how >>> to >>> > express to me what they want or what they need. It rips my heart >>> > into pieces standing by and not only >>> am >>> > I unable to help, but I don't even know what they >>> want >>> > because they don't and can't tell me. >>> >>> I'll give you $100 if you can tell me where I said I'm against >>> progress, if you'll give me $100 and an apology when you >>see it isn't >>> there, because it isn't true. Teaching communication skills >>isnt the >>> same thing as curing autism. >>> >>> I try guessing, >>> > I ask them anything that I can, anything that I >>> think >>> > that they might want. And they just scream and >>> beat >>> > their head into a wall or bite themselves or pull their >>hair. Then >>> > they throw things at me and try >>> to >>> > bite me and they cry more. I sometimes end up >>> figuring >>> > out what they wanted and then they are fine. But >>sometimes I can't >>> > guess, because I don't know. The other day my daughter cried and >>> > screamed and did >>> this >>> > for 25 minutes while I tried to show her options, >>> and >>> > tried to use sign language and tried to use any >>> words >>> > or pictures I could think of. >>> >>> Hi. Im bipolar. I could easily throw an hours long tantrum. Again, >>> teaching communication and frustration management isn't >>cure. *hates >>> repeating herself. has said this over 2000 times*. >>> >>> I could not guess and >>> > she was very sad and mad all at once. Finally I >>> told >>> > her I could not help her, that I loved her and >>> gave >>> > her a hug, but that until she could tell me or >>> point >>> > to what she wanted I would have to leave. She just kept >>saying NO, >>> > No mommy, but that doesn't tell me what to do. Finally she cried >>> > Snowman. Normally >>> people >>> > would think what does that have to do with >>> anything. >>> > But for years now I have sang a song to her about >>> a >>> > snowman. She never said anything about it, I never knew >>she was even >>> > paying attention, and I sing her >>> a >>> > lot of other songs, so when I tried guessing if >>> she >>> > wanted singing, I had started singing a different >>> song >>> > earlier. Well once she said that one word, I sang >>> her >>> > the song and she was sooooo happy and said I love >>> you >>> > and hugged me and it was a wonderful moment. That >>> was >>> > her personality Kassi, not the screaming and tantruming >>because she >>> > is fed up and doesn't know >>> how >>> > to say words to me and I can not read minds. >>> >>> Screaming and tantrumming cover up the happiness that people call >>> their personalities. >>> Fine. >>> >>> Now lets pretend there are autistic people who don't >>tantrum. Are they >>> without personality if they can't speak? No. Are there non autistic >>> people who are more likely to throw a hissy fit than >>others? yes. It's >>> part of their personality. Really. It is. Stoicism vs something I >>> can't remember. >>> >>> Like it or not, autism is IN OUR BRAINS. It isn't vaccines. It isnt >>> measles in the gut. It is A BRAIN DIFFERENCE. Check out the scans >>> sometime. >>> >>> >Maybe you >>> > also wish that we " NT people " as you keep calling >>> us >>> > in a negative way, could read your mind. >>> >>> NT=Neurotypical. No one is normal. You don't know that I >>always use it >>> negatively. Kindly don't try to read my mind, you don't >>even know me, >>> my skills, or lack thereof. You just have a pile of assumptions. >>> >>> >Sometimes >>> > even NT people wish that someone could read their >>> mind >>> > too, so that they didn't have to try so hard >>> either, >>> > but that is not possible. >>> >>> You read each other's minds all the time. It's subtle, but >>you do it. >>> I went to high school not long ago. I remember. >>> >>> >So it is not that we want the People who have Autism to go away >>> >Kassi. We of anyone, love >>> our >>> > children and spouses and friends who are afflicted with Autism. >>> >>> It's damned insulting to call it an affliction. >>> Autism as a whole doesn't suck. >>> Communication problems suck. Frustration intolerance sucks. Other >>> people's attitudes suck. Autism, itself, isn't that bad. >>> >>> >We even love you Kassi. Even if you don't >>> > believe that. We love you for being willing to >>> help us >>> > understand you and how you think so that we can >>> better >>> > understand our angels. But please don't critisise >>> us >>> > for wanting to help our families. Our children >>> have >>> > illness. The thing is, you are confused thinking >>> that >>> > we want to get rid of our children and want to >>> take >>> > away their sparkling personalities. Of course we >>> don't >>> > want to do that, we only want to eliminate the sickness part of >>> > autism. >>> >>> I have illnesses too. They're called pituitary failure and celiac >>> disease. Well, and epilepsy is kind of on the line. Autism DOES NOT >>> MAKE PEOPLE SICK AND DOES NOT KILL THEM. Read some old skool Jim >>> Sinclair. >>> >>> >The part where for some >>> > reason they are unable to express themselves and >>> how >>> > they feel and the part where they are able to use >>> the >>> > bathroom and not a diaper, and the part where they >>> can >>> > maybe someday be ok on their own and be able to >>> stand >>> > up for themselves if we have to go to the >>> bathroom, or >>> > to work, or when we age and one day pass away. >>> That is >>> > what we want. We don't want them to all look alike >>> and >>> > act alike. >>> >>> Teaching self advocacy and independance skill is a better way to >>> achieve an independant, or semi independant, life for >>autistic people >>> than trying to rewire them is. >>> >>> >You are right that " The World " or " the Media " as a whole tends to >>> >want to eliminate individualism. But that has nothing to do with >>> Autism, >>> > they don't want any one one to be unique or stand >>> out. >>> >>> Except Paris Hilton *barfs* >>> >>> >>=== message truncated === >> >> >>__________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 >>>>And PS nobody likes Paris Hilton except herself. And my P.S.: I like Paris. She cracks me up. I don't know anyone else who can become as famous as she has without doing anything particularly well. THAT is an accomplishment, becoming famous for nothing in particular! ;o) Grace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 > > > But take you, Kassi... and put you into my home, or other homes with even > worse cases, and try and tell me I should not try and fix what's wrong with > this picture. I know you've read the at least 20 times this week Ive said Im not against progress. So dammit quit accusing me of saying things I'M NOT SAYING. If I was I'D SAY IT. LEARN TO READ, PEOPLE. *fumes* You also are making assumptions about what I can and cant do. >Yes, it happens all the time all over the world, it doesn't > make it right. No child should have to live with a parent who is consumed > by that fear, and no child should have to be looked upon the way that many > disabled children are. Yes, disabled. When you can't go to the bathroom by > yourself, when you can't function within society as it is, when you can't > speak, when you can't communicate, when you can't understand the world > around you - - it's a disability, and an affliction, Kassi. When the lack > of being able to understand the world as it is ends up frustrating you, > angering you, and changes your reaction to the world on account of that itty > bitty difference - - it's a disability, no matter the size of the > vocabulary. Check out the disability rights stuff. I suggest starting at www.raggededgemagazine.com. You'd be surprised at the kinds of people who are involved. Including those who can't wipe their own butts. Also check out www.gettingthetruthout.org. ALL OF IT. > ly, given your diagnosis, I am truly in awe of the way you can > communicate. If I thought there was on iota of a chance that in 10 years, > 20 years or even 30 years that my child would have half your vocabulary - - > - I'd sacrifice my life, on the spot. You dont know how I can communicate in all situations, just how I can type when given a prompt (namely a post to reply to). > But when that is the KIND of autism YOU have, and you're able to tell > someone off due to the way you feel, and stand up for yourself because > you're angry and sick of it - - then you cannot possibly understand or > sympathize how the mom of a 5 year old child who has yet to look into > someone's eyes might feel, especially given your diagnosis. You can > legitimately claim, " It's a way of being, don't try to change us " when you > can wipe your own butt after going to the bathroom but have no place in > telling the parents of those less fortunate than yourself that they have no > right or business in doing what they feel they need to do. DONT TELL ME WHAT I CAN AND CAN'T DO. You dont know what it is to have every bit of your being disacknowledged because you " talk funny " and " walk funny " . I've worked with severe autistic children. I know what severe autism is. But frankly, I'm sick of being told i need to have sympathy for parents who don't like their kids, and who assume what I can and can't do or know, and who have zero sympathy for anyone on the spectrum. >You can't > possibly tell them not to try any and every pseudo-therapy, fluke ideas, and > ridiculous theories out there to hopefully try and help that child become a > fraction of who you are. I can if one of the side effects of the snake oil is death or chemical castration. THose are 2 in vogue right now. Incidentally, having my real mercury poisoning treated didnt change my autism status, and my testosterone is low. > I will fight my ass off to make sure they get their education to the best of > their ability, and ensure that I use every resource I have to make sure it > is geared for them specifically. WHO THE HELL SAID IM AGAINST THAT? Will you people quit reading things into what I say?? Gods. You all say *we* have no theory of other minds or empathy or anything. There is nothing glorious, fun, or worthwhile about > having your own parent drop you off at a facility because they can no longer > raise you. No shit sherlock. My mother kicked me out because I didnt want her at my state meet. My dad and stepmom kicked me out because I was on psych meds, and thats a " crutch " . Don't tell ME about parental abandonment. It's not your place. Don't tell ME what it is and isn't to be autistic. It's not your place. And you can take your assumptions and stick them where the sun don't shine. I'm sick of it. From everyone who's made them. Kassiane good job, I'm pissed again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Grace while I to be to not be sharing this as in agreeing to the words of things you bringed forth to Kassi as not agreeing to that part of you post but about the parenting parts yes much so agree as to why some parents are so desperate and aobut the life of some yes I to understand it all too well as lived of it to a various degree and why life allowed me to emerge through to a different state is unknown to me but trust of me to share I to understand of it all too well but I to also understand that in my life the parents of me were not trying to help and it was of severe abuses to me and yet it seemed to force me to ahve to find ways to survive if you will and from young teen years to mid adult years was of housed and locked into the mental wards with adults who has severe mental illnesses and no protections no one to reach in to help and yet in the life I to me I to be of a fighter girl and survived of it. So whe I to speak out I to speak from personal expressions of living it. I to be smart in words to a various degree now and more so since having what I to term my voice box (computer) AND from finding acceptance of the parents and professionals and even legistlators of politcal rankings in my areas. I to feel safer since having people understand of me and it has been to expose me to much life things, words and things this life of me nver would have been to reach had the parents of me won and had me placed in to the group home they were of working towards. What stopped them is I to turned 18 and as adult person they did not have guardianship so they had no legal right to place me unless they seeked out the guardian ship they never did it was too much work. I to collected SSI but never seen of the money from what I to remember of this. I to also be to had a family friend who advocated for me to get of my first job and it was in a place for medically fragile and severe/profound mental retardation a nursing home sort of place for 48 clients several with autism. this was before understood my own diagnoses I to did well once I tounderstood the job and related so strongly to the clients(childrens) who most were no verbal and or had of limited words. but I to loved them kids . it was because someone helped me and speaked for me and I to had a chance at being " able " for the first time. My co peers asked of me why I to never go out with them, I to never speak much for them and spend all my time with the clients. Well because I to be to realted to them as internally was at their level of being./ I to not seen of self a better than or less than but an equal and it was my first exposure to childrens whose bodies growed in ways I to lack how they were to be to ahve breath but they had souls and their souls reached of me and me of them . So what am of saying is life brings for different learning exposures and experiences and from these little life teaches I to gained and growed emotionally and in life skills. I to be to also shared did do much a good job and got of very HIGH evlauations from my supervisor but the areas of need for improvement was to be more social and to interact and verbalize more with co workers. They to also aksed of me much why I to always comed to work happy. I to be to not knowed it then as lacked of words to it but will share that the internal me felt strong connect for the first time to others who like me must feel as if they were illusions and not real, I to seen of thems soul and knowed they were of real. I to be to have to take of the husband to work. But will close although have of autism and was very different and odd someone gave of me a chance. I to be happy I to had that chance. It was a job I to worked for a few years before could no longer cope the social expectations the supervisors kept tyring to place on me. they kept asking me why I to did this or that and why my work was of strong need to be in such rigid fashions and why i to cried if change happened but they too lacked knowing and if they did felt unsure to speak it to me. I to maked much gains in life in the last 20 years. Kassi too needs that same time allowed to her as well. In Autism_in_Girls , " Grace Keh " wrote: > > > Esther, I am not sure what you are apologizing for. > > The way I see it - - you have some very functional, talented, intelligent > and very capable people on this list and out there in the world who have all > been diagnosed as having autism. I am fine by that. " Different way of > thinking! Different way of being! It's not wrong to be different! " they > say. I wholeheartedly agree. > > But take you, Kassi... and put you into my home, or other homes with even > worse cases, and try and tell me I should not try and fix what's wrong with > this picture. Tell me that someone should WANT to live with a child who > can't manage to go to the toilet to poop at age 15, or tell me that mom > should let them 7 year old son bang their head into a wall because the toast > was altogether wrong. Silly examples, perhaps, but there are a lot worse, > too. If you want to call them the " unfortunate side effects " of autism > instead of autism, if you want to label it as something else in order to > avoid the malignancy attached to the word, condition, affliction, state, or > way of being that autism is so that you yourself don't get lumped into the > assumably irrational urge these parents have to change their " otherwise > perfectly normal " kids - go right ahead as I could care less what you > call it. It's real and there is very little that is GREAT about it, or > good, or even bearable. > > NO parent, autistic or otherwise, should have to watch their child fall > apart and not be able to help them. No parent should have to live, knowing > that a day will come soon when she herself cannot handle raising this child > in the home because of the danger she presents to herself and the rest of > the family. Yes, it happens all the time all over the world, it doesn't > make it right. No child should have to live with a parent who is consumed > by that fear, and no child should have to be looked upon the way that many > disabled children are. Yes, disabled. When you can't go to the bathroom by > yourself, when you can't function within society as it is, when you can't > speak, when you can't communicate, when you can't understand the world > around you - - it's a disability, and an affliction, Kassi. When the lack > of being able to understand the world as it is ends up frustrating you, > angering you, and changes your reaction to the world on account of that itty > bitty difference - - it's a disability, no matter the size of the > vocabulary. > > ly, given your diagnosis, I am truly in awe of the way you can > communicate. If I thought there was on iota of a chance that in 10 years, > 20 years or even 30 years that my child would have half your vocabulary - - > - I'd sacrifice my life, on the spot. > > But when that is the KIND of autism YOU have, and you're able to tell > someone off due to the way you feel, and stand up for yourself because > you're angry and sick of it - - then you cannot possibly understand or > sympathize how the mom of a 5 year old child who has yet to look into > someone's eyes might feel, especially given your diagnosis. You can > legitimately claim, " It's a way of being, don't try to change us " when you > can wipe your own butt after going to the bathroom but have no place in > telling the parents of those less fortunate than yourself that they have no > right or business in doing what they feel they need to do. You can't > possibly tell them not to try any and every pseudo-therapy, fluke ideas, and > ridiculous theories out there to hopefully try and help that child become a > fraction of who you are. > > I, personally, gave up on all of therapies and " cures " a long time ago, > calling them quack theories in my mind, and accepting the situation for > what it is. I have two kids whom I cherish, and in spite of effort, love, > work, research, prayer and what have you - - my life is what it is. That > was the right decision, for ME, and even I cannot tell the other parents > that what they are doing, even if I do think it's grasping at straws, even > if I do think it might be more harmful than good, is WRONG. It's not wrong, > it's their way of survival, kid. > > I will fight my ass off to make sure they get their education to the best of > their ability, and ensure that I use every resource I have to make sure it > is geared for them specifically. Now, as I sit here with my marriage > falling apart, and fully realizing that one of my kids will soon have to be > put into a home as the rest of us cannot live anything remotely resembling > " a life " on account of her, whom I love so painfully much - - I still look > for only peace and hope to find a new life. I have no idea how, and I have > no idea if it can happen, but these are decisions I would not have wished on > my worst enemy. If I should try a therapy so that I might avoid this huge > hurdle before me, far be it for you to tell me it's wrong, or that it's just > her way of " being " . There is nothing glorious, fun, or worthwhile about > having your own parent drop you off at a facility because they can no longer > raise you. > > YOU WROTE: > >>>>>>>>>>>>>>>>>>>> > uhhuh. it is. I didn't need the condescension. Y'all seem to avoid the > points that 1. at an autism conference, where the hell are the autistic > people? > and > 2. AUTISM PARENTS DON'T HAVE A MONOPOLY ON HARD LIVES. Guess what? over 90% > of autistic people are sexually abused. Uh-huh. Get angry about that one and > change that for a while. > <<<<<<<<<<<<<<<<<<<< > > The majority of the autistic population, yourself excepted, were at home > with paid caretakers so their parents and family members could come and > gather to further learn on how to live their lives, make it better, and > where to go next. They're home because they have no means of understanding > what the speakers are talking about, they don't have sufficient vocabulary > to comprehend, and because if they came - - the rest of the people attending > would be the first one to claim they cannot hear the speaker. > > As for the monopoly we have on life being hard.... it's hard because we > spend it trying to avoid and prevent situations in which our children might > get sexually abused or hurt, or otherwise misunderstood, or destroyed on > account of their disabilities. It's not easy being an individual yourself, > but having a legal, emotional, spiritual and physical responsibility and > connection to a child who cannot defend herself from the abuse you mention > and having to spend your life, as you know it, preventing just that - - - > not to mention knowing you will have to spend the rest of your days doing > just that if something doesn't give. > If 90% of the autistic population is being sexually abused, and you don't > want to call it an affliction, or suffering, or disability or anything that > might have a less than positive inference - - then I don't know WHAT is an > actual disability. When the majority of the autistic people in the > community cannot function at your level and can barely communicate or make > their thoughts known --- perhaps it is YOU that needs to opt for a different > diagnosis at least in name, because there is simply no way you will convince > anyone who has done what I've had to do for 8 years now that this is merely > a case in which I must teach the child to live in the world, or that all I > needed to do was, in your own words: > " Teaching self advocacy and independance skill is a better way to achieve an > independant, or semi independant, life for autistic people than trying to > rewire them is. " > > No, autism is not terminal and it is not " sick " in the way diabetes or > cancer is. Yea - they're not dead so we should thank our lucky stars. But > " SICK " is anything that is not well, and damn me for saying this, but > something is not well about a child who felt compelled to drown a kitten not > because they are a sociopath, but because they didn't understand, or a child > whose scars on his forehead cannot heal because it's never given a chance to > heal in between him banging it on the ground or the wall or the concrete. > That is neither sound nor stable, and by my definition, is sickness. You > don't have to die from something for you to be sick. > You go tell that kid and that parent that autism " ain't that bad " . > > And if you don't want to be talked down to - - then perhaps you start acting > like an adult yourself. Knowing you are in your manic phase but continuing > to spew out words to others just to be hurtful has nothing do with autism or > being bipolar, kid. It's got everything to do with being angry and not > being able to deal with that anger in a rational, mature manner. By > definition, that is exactly what is referred to as a " tantrum " . > > > Grace > > >> Kassi I'm Sorry > >> > >>Kassi, > >>I was not talking to you as a 4 year old. I was talking to > >>you as I would talk to any friend or family that I knew was > >>frusterated and was trying to help them to know from my words > >>and tone that I was not angry and was trying to be calm and > >>allow myself to find the right words that would not hurt or > >>frusterate anyone. > >>You are right that I do not know you, but you also do not > >>know me any better than I know you. Do you think that people > >>here do not know that there is sexual abuse and many other > >>illnesses out there? Do you think that we are not concerned > >>about those? > >>well it sounded like that is what you think from what you > >>said, and first off at least half of us on this group are in > >>that 90% you spoke of having been sexually abused or at very > >>least are trying to help our loved ones who have or are still > >>being abused. > >>Most of us on here struggle with many of our own health > >>issues. We have diabetes, insulin resistance, depression, Bi > >>polar disorder, Crohn's disease, some of us here probably > >>even have cancer. And we are not freaking out and getting so > >>defensive over what everybody else says about these topics. > >>Kassi I am sorry. I already appologized that you are > >>affended, but just because you have an opinion does not mean > >>others are not entitled to one or to contradict yours. That > >>is the way of a FREE country. > >>If you don't like it move somewhere else and get told what to > >>do in every aspect of your life by a dictator. > >>People are allowed to an opinion in a free world, even if it > >>is a bad opinion. If you don't like other's voicing there > >>opinions and thoughts then don't read their posts. It is as > >>simple as that. > >>I have a father who is very rude and condecending to me and > >>has been all my life. He writes me e-mails on a regular > >>basis. Some of them are nice, some of them are very rude. I > >>could block his e-mail, but I enjoy some of the nice e-mails > >>he sends and I love him, so therefore when I get an e-mail > >>from him then I scim through it before reading it thoroughly. > >>I do this because if I read it thoroughly, then I might hate > >>him again and not be able to respond politely and I might > >>never speak to him again. So if there are things that seem > >>negative and like I won't enjoy the letter then I throw it > >>away to the trash bin. > >>You or any one can judge me all they want and say I should do > >>this or that or that's not how they do it. > >>Fine, but the reason I mentioned it is because I am the one > >>who chooses whether or not I will be happy, not you or any > >>one on this post, not my parents, not my past, not anyone and > >>so my method of being able to stay happy, sometimes is by > >>ignoring people who are being rude and trying to get a " rise " > >>out of me. > >>The reason that I chose to post to you, is because it seemed > >>to me that maybe you wanted to really talk or understand that > >>not everyone is how you have in the past clumped them > >>together to be. But maybe I was wrong. > >>Anyone can take anything the way that they want to and I am > >>not being condecending, this is how I speak to everyone, my > >>husband, my friends and my 4 year old alike. If you choose to > >>be an angry, unhappy, bitter person than there is nothing > >>that anyone on here can say or do to help you and there is no > >>point in us trying to help you see how we feel or see things > >>if you don't want to and if you don't care. But just know > >>that in the future you may not get many responces from people > >>if you treat them so unkindly and if you snap at everyone who > >>tries to come near you or share there opinion. > >>You said that you don't want anyone to speak to you like you > >>are a child, so that is why I am trying harder to be blunt. > >>Maybe you haven't payed attention to this before, but many > >>people let children get away with everything and they agree > >>with them and they let them say or do or think what ever they > >>want and they don't call them on it, because " Oh they are > >>just little kids " , but with adults they have conversations > >>like this, where they say " you are being rude, please curb > >>your temper and stop the bad attitude " . So if you want to be > >>treated like an adult and the way the majority of the world > >>is treated then don't be mad at us for posting to you and > >>treating you like a " grown up " . > >>If you want us to treat you like a child or a person with a > >>disability then we'll coddle you. Take your pick! You don't > >>get both. I too, am pretty fed up with your insensitive, > >>rude, and bold statements. Until now I have never really said > >>a thing to you about it. You may think that everyone jumped > >>at you, but they are only trying to defend themselves and are > >>getting tired of the negativity about any solution or hope > >>for them and their children in the future. They are allowed > >>to hope for whatever they want to. And not one of us is going > >>to ever do anything to try and harm our children. Why do you > >>think we are always on here asking you and Sondra and > >>and everyones advice or opinions. We are trying to make the > >>best most infomative decision possible for our babies. They > >>are not old enough to make these decisions yet regardless of > >>their Autism or not, even if you are. > >>As for me, I told you that my way of handling uncomfortable > >>situations is usually to ignore them. I decided not to this > >>time, to try and give you another chance to just let it go > >>and stop being so rude, but if you keep up the rude nasty > >>responses to people, I will not read or repond to any more of > >>those posts, they will go in my trash been too. > >>So please, I know you have many nice and helpful things to > >>say, please leave this alone and accept peoples opinions and > >>appologies and share the opinions you have without saying > >>such intentionally hurtful things to others. If you can't > >>then I wish you well, and will possibly respond or read your > >>posts again, down the road when and if you can be a little kinder. > >>In the meantime here are a few books and a quote that I think > >>may help you in your Comunication area. You said you agree > >>that people can get new and better skills, so please try that. > >>Again, as somebody else said in here before " Nobody wants to > >>fix you Kassi " They honestly don't, not your Autism anyway. > >>They want you to be a little nicer and less aggressive and > >>yah there are people who have those personalities without > >>being autistic and they are called " Scrooge " and nobody likes > >>them. But people can change their personalities too, and in > >>any kind of relationship you have to work on your personality > >>little by little to get along with others, or you will end up > >>a charity case or very lonely. Nobody wants you to be lonely, > >>so please try. > >>One book that has really helped me in dealing with my own and > >>others personality and communication issues is called " How to > >>Hug a porcupine " by Lund and the other is " When > >>bad things happen to good people " > >>by I think the guys last name is Kushner or somthing. > >>I don't know if you are religeous or not or what your > >>religion is, but he is a Jewish Rabi. I am not jewish at all, > >>but he is not preachy and his book is not about religion, it > >>is about hardships that humans must face and learn to overcome. > >>And there is one quote from the Movie " Ray " that I really > >>appreciated that I would like to share with you Kassi. I am > >>not going to be able to get it word for word, but it his mom > >>in the movie tells him that just because he's blind she > >>doesn't want him using that as a crutch and she doesn't want > >>him hating the world and others because of his difference and > >>she doesn't want him to ever give up and let himself just > >>become a charity case. > >>I can tell that you are a fighter and you are not going to > >>give up. I can tell that even if I don't know you and even > >>without ever meeting you. Those are very good attributes, but > >>we have to learn how to find a happy medium in every aspect > >>of life. None of us here want you to roll over and take crap > >>from any body, but we also won't do that, Ok? > >>So again, I am sorry for accidently using words that have > >>offended you. But honestly Kassi, I didn't mean to. I'm not > >>perfect at choosing my words either. No one is, but we all > >>work hard at it. Maybe in the past we haven't had to try as > >>hard as you, but we are not giving up and you need to try > >>harder right now to use less swear words and less insults. We > >>would all be happier, even you. I hope you can understand > >>that like I said at the end of my first letter, asking > >>somebody what they meant some times is a much better way to > >>go about communication, because then you know their intent or > >>what they were trying to say, if they accidently chose poor > >>wording. So please instead of lashing back again, if you > >>don't understand what I meant than ask. And just to clarify > >>this for you, I am not saying that you don't understand > >>because you are autistic. Anyone can and does misunderstand every day. > >>So I just mean as a Human being, not anything else, just ask. > >>Lets get past this please. I am sorry! Esther > >> > >>And PS nobody likes Paris Hilton except herself. The only > >>reason she appears on all of everything is because her dad > >>has thousands and millions of money and he pays for his > >>selfish daughter to do whatever > >>she wants > >> > >>--- kassihatestwistin > >>wrote: > >> > >>> > >>> > > >>> > Thank you Tina for saying that. Kassi, I too am > >>> sorry > >>> > that maybe your parents did not try as hard as > >>> some of > >>> > us parents are trying and maybe they did and they > >>> just > >>> > did not have the recourses that are available to > >>> us > >>> > today, > >>> > >>> a. and b. But given that I have a friend with SEVERE PTSD from ABA > >>> (adult. one of the original " indistinguishable from peers.) I think > >>> I'll stick with what I got, minus the peer abuse. Thanks anyway. > >>> > >>> >but I watch my daughters crying and screaming and hurting > >>themselves > >>> >because they don't know how > >>> to > >>> > express to me what they want or what they need. It rips my heart > >>> > into pieces standing by and not only > >>> am > >>> > I unable to help, but I don't even know what they > >>> want > >>> > because they don't and can't tell me. > >>> > >>> I'll give you $100 if you can tell me where I said I'm against > >>> progress, if you'll give me $100 and an apology when you > >>see it isn't > >>> there, because it isn't true. Teaching communication skills > >>isnt the > >>> same thing as curing autism. > >>> > >>> I try guessing, > >>> > I ask them anything that I can, anything that I > >>> think > >>> > that they might want. And they just scream and > >>> beat > >>> > their head into a wall or bite themselves or pull their > >>hair. Then > >>> > they throw things at me and try > >>> to > >>> > bite me and they cry more. I sometimes end up > >>> figuring > >>> > out what they wanted and then they are fine. But > >>sometimes I can't > >>> > guess, because I don't know. The other day my daughter cried and > >>> > screamed and did > >>> this > >>> > for 25 minutes while I tried to show her options, > >>> and > >>> > tried to use sign language and tried to use any > >>> words > >>> > or pictures I could think of. > >>> > >>> Hi. Im bipolar. I could easily throw an hours long tantrum. Again, > >>> teaching communication and frustration management isn't > >>cure. *hates > >>> repeating herself. has said this over 2000 times*. > >>> > >>> I could not guess and > >>> > she was very sad and mad all at once. Finally I > >>> told > >>> > her I could not help her, that I loved her and > >>> gave > >>> > her a hug, but that until she could tell me or > >>> point > >>> > to what she wanted I would have to leave. She just kept > >>saying NO, > >>> > No mommy, but that doesn't tell me what to do. Finally she cried > >>> > Snowman. Normally > >>> people > >>> > would think what does that have to do with > >>> anything. > >>> > But for years now I have sang a song to her about > >>> a > >>> > snowman. She never said anything about it, I never knew > >>she was even > >>> > paying attention, and I sing her > >>> a > >>> > lot of other songs, so when I tried guessing if > >>> she > >>> > wanted singing, I had started singing a different > >>> song > >>> > earlier. Well once she said that one word, I sang > >>> her > >>> > the song and she was sooooo happy and said I love > >>> you > >>> > and hugged me and it was a wonderful moment. That > >>> was > >>> > her personality Kassi, not the screaming and tantruming > >>because she > >>> > is fed up and doesn't know > >>> how > >>> > to say words to me and I can not read minds. > >>> > >>> Screaming and tantrumming cover up the happiness that people call > >>> their personalities. > >>> Fine. > >>> > >>> Now lets pretend there are autistic people who don't > >>tantrum. Are they > >>> without personality if they can't speak? No. Are there non autistic > >>> people who are more likely to throw a hissy fit than > >>others? yes. It's > >>> part of their personality. Really. It is. Stoicism vs something I > >>> can't remember. > >>> > >>> Like it or not, autism is IN OUR BRAINS. It isn't vaccines. It isnt > >>> measles in the gut. It is A BRAIN DIFFERENCE. Check out the scans > >>> sometime. > >>> > >>> >Maybe you > >>> > also wish that we " NT people " as you keep calling > >>> us > >>> > in a negative way, could read your mind. > >>> > >>> NT=Neurotypical. No one is normal. You don't know that I > >>always use it > >>> negatively. Kindly don't try to read my mind, you don't > >>even know me, > >>> my skills, or lack thereof. You just have a pile of assumptions. > >>> > >>> >Sometimes > >>> > even NT people wish that someone could read their > >>> mind > >>> > too, so that they didn't have to try so hard > >>> either, > >>> > but that is not possible. > >>> > >>> You read each other's minds all the time. It's subtle, but > >>you do it. > >>> I went to high school not long ago. I remember. > >>> > >>> >So it is not that we want the People who have Autism to go away > >>> >Kassi. We of anyone, love > >>> our > >>> > children and spouses and friends who are afflicted with Autism. > >>> > >>> It's damned insulting to call it an affliction. > >>> Autism as a whole doesn't suck. > >>> Communication problems suck. Frustration intolerance sucks. Other > >>> people's attitudes suck. Autism, itself, isn't that bad. > >>> > >>> >We even love you Kassi. Even if you don't > >>> > believe that. We love you for being willing to > >>> help us > >>> > understand you and how you think so that we can > >>> better > >>> > understand our angels. But please don't critisise > >>> us > >>> > for wanting to help our families. Our children > >>> have > >>> > illness. The thing is, you are confused thinking > >>> that > >>> > we want to get rid of our children and want to > >>> take > >>> > away their sparkling personalities. Of course we > >>> don't > >>> > want to do that, we only want to eliminate the sickness part of > >>> > autism. > >>> > >>> I have illnesses too. They're called pituitary failure and celiac > >>> disease. Well, and epilepsy is kind of on the line. Autism DOES NOT > >>> MAKE PEOPLE SICK AND DOES NOT KILL THEM. Read some old skool Jim > >>> Sinclair. > >>> > >>> >The part where for some > >>> > reason they are unable to express themselves and > >>> how > >>> > they feel and the part where they are able to use > >>> the > >>> > bathroom and not a diaper, and the part where they > >>> can > >>> > maybe someday be ok on their own and be able to > >>> stand > >>> > up for themselves if we have to go to the > >>> bathroom, or > >>> > to work, or when we age and one day pass away. > >>> That is > >>> > what we want. We don't want them to all look alike > >>> and > >>> > act alike. > >>> > >>> Teaching self advocacy and independance skill is a better way to > >>> achieve an independant, or semi independant, life for > >>autistic people > >>> than trying to rewire them is. > >>> > >>> >You are right that " The World " or " the Media " as a whole tends to > >>> >want to eliminate individualism. But that has nothing to do with > >>> Autism, > >>> > they don't want any one one to be unique or stand > >>> out. > >>> > >>> Except Paris Hilton *barfs* > >>> > >>> > >>=== message truncated === > >> > >> > >>__________________________________________________ > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 I feel so bad that I started this controversy when I first responded to Kassie's post on her aversion to conferences like Autism One. Although I still disagree with many of her points I do understand her position better and can respect her opinion, hell this IS America! I thought I would explain to her my opinion and reason for wanting to attend these type of conferences as a mom of an autistic child that is much more severe then kassie " sounds " to be (there is no way my daughter could defend herself verbally like Kassie does) Kassie sounds like she had a real hard life starting with the abandoment of her PARENTS, the terrible school experience and the challenges daily of being a person with autism. I for one would like to see an end of the bashing each other on this list, it is getting very ugly and it is really not needed. Kassie, I know you feel the need to defend yourself against what others are saying but this could go on forever. Sorry again that this got out of hand, Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Yes. Let's end it. I'm sorry for where I crossed the line. And I don't think Autism One as a whole is BAD, I just wish they'd see the value in autistic speakers, and in promoting our humanity more. Not just promoting curemongers and those who seek to sell snake oil. Some of their info is very good though (I used to live 2 1/2 hours south of Chicago, I picked up some nifty stuff one year. Unfortunately there was other stuff that had me running out of the room giggling at the leaps of logic). Kassianee > > I feel so bad that I started this controversy when I first responded to Kassie's post on her aversion to conferences like Autism One. Although I still disagree with many of her points I do understand her position better and can respect her opinion, hell this IS America! I thought I would explain to her my opinion and reason for wanting to attend these type of conferences as a mom of an autistic child that is much more severe then kassie " sounds " to be (there is no way my daughter could defend herself verbally like Kassie does) Kassie sounds like she had a real hard life starting with the abandoment of her PARENTS, the terrible school experience and the challenges daily of being a person with autism. I for one would like to see an end of the bashing each other on this list, it is getting very ugly and it is really not needed. Kassie, I know you feel the need to defend yourself against what others are saying but this could go on forever. > Sorry again that this got out of hand, > Tina > > > Quote Link to comment Share on other sites More sharing options...
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