Guest guest Report post Posted June 9, 2010 You sound like a wonderful spouse, Sue - a perfect match for any Aspie to help them blossom and be okay with themselves. I am fortunate to have an accepting spouse too. I would rather be alone that be with a critical, nasty one. Miranda > > > > > > Great post, Sue! I like how you explained the " mild AS " part as well. > > > i have always noted how many people say that their kid has " mild AS " > > > and I venture that almost 90% of people who come to this group say that > > > very thing which I find really curious! I have often thought people > > > say that their kid is " mild " AS because they think of AS as being mild > > > in relation to autism? But I don't know if that's a good explanation > > > as they seem to think it's mild in relation all people with AS. > > > > > > Anyway, your point is well taken and I agree. It also goes with what > > > was said earlier about people whose kids are younger vs. people who > > > have teens or young adult kids with AS/HFA and how we view having AS > > > differently. It would be interesting to track the changes in parent > > > perception along the way as well. That would make an interesting > > > study! > > > > > > > > > Roxanna > > > Whenever I feel blue, I start breathing again. > > > > > > > > > Re: ( ) Cure > > > > > > Do people who can't even talk or communicate have aspergers? I think > > > she is referring to aspergers only--as this is an aspergers group. > > > Asperger children are even above high functioning autism on the > > > spectrum. They are completely independent as adults and do not have the > > > issues that other lower spectrum children have. > > > So I think she is referring to Aspergers--not the children who can't > > > communicate or participate. > > > > > > Purrs & Kisses, > > > Kristal of Digi Kitty > > > The Kitty who loves Digi! > > > Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > > >  > > >  > > >  > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 9, 2010 Thanks, Amber, I definitely feel worse than he does about AS. The OCD, now, that he really hates. Attack and enjoy every minute of life. Try everything.....protect everything. Robin > > > > > >I somehow have lost the thread to this and was going to respond to >Roxanna’s comment that if there was a cure for autism she would go for >it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. >We all love our children and we all will say we love them as they are. >But to say you wouldn’t want them cured of autism if that was possible >is just as silly as saying you wouldn’t want your child cured if they >had __________ (fill in the blank: diabetes, cancer, deafness, >blindness, the list could go on and on). Many of us on this group have >kids who are older and we have spent years and years on therapies, >support, medications, and continue to see our kids struggle. So, to >say you wouldn’t want your child cured is silly (I am trying to be nice >as I can think of much more appropriate, though less politically >correct, language). > > > > > > > > > > > > > > > > > >“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >the round pegs in the square holes... the ones who see things >differently -- they're not fond of rules... You can quote them, >disagree with them, glorify or vilify them, but the only thing you >can't do is ignore them because they change things... they push the >human race forward, and while some may see them as the crazy ones, we >see genius, because the ones who are crazy enough to think that they >can change the world, are the ones who do.†- Steve Jobs > > > >“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >the round pegs in the square holes... the ones who see things >differently -- they're not fond of rules... You can quote them, >disagree with them, glorify or vilify them, but the only thing you >can't do is ignore them because they change things... they push the >human race forward, and while some may see them as the crazy ones, we >see genius, because the ones who are crazy enough to think that they >can change the world, are the ones who do.†- Steve Jobs > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 9, 2010 I asked my 10 year old he could take a pill like he does for adhd and get rid of as, make you not flap your hands, help you control your fits, and make friends would you take it he says no every time i ask him. He tells me it would be nice to have a friend but he said he won't die without them lol, our new ocd is straightening the grocery store, we can't leave am isle until it is straight. He did find kids to play with at the pool today, his age too. I am sad for him, but he he is ok with it i should be too. I think i have to put myself in check sometimes and not have a pity party, i have to remember he is ok with him, so i have to be. The ocd doesn't bother him yet, but i am sure closer to Jr high it will. and/or Robin Lemke <jrisjs@...> wrote: >Thanks, Amber, > >I definitely feel worse than he does about AS. The OCD, now, that he really hates. > > >Attack and enjoy every minute of life. >Try everything.....protect everything. > >Robin > > > >> >> >> >> >> >>I somehow have lost the thread to this and was going to respond to >>Roxanna’s comment that if there was a cure for autism she would go for >>it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. >>We all love our children and we all will say we love them as they are. >>But to say you wouldn’t want them cured of autism if that was possible >>is just as silly as saying you wouldn’t want your child cured if they >>had __________ (fill in the blank: diabetes, cancer, deafness, >>blindness, the list could go on and on). Many of us on this group have >>kids who are older and we have spent years and years on therapies, >>support, medications, and continue to see our kids struggle. So, to >>say you wouldn’t want your child cured is silly (I am trying to be nice >>as I can think of much more appropriate, though less politically >>correct, language). >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>the round pegs in the square holes... the ones who see things >>differently -- they're not fond of rules... You can quote them, >>disagree with them, glorify or vilify them, but the only thing you >>can't do is ignore them because they change things... they push the >>human race forward, and while some may see them as the crazy ones, we >>see genius, because the ones who are crazy enough to think that they >>can change the world, are the ones who do.â€Â  - Steve Jobs >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>the round pegs in the square holes... the ones who see things >>differently -- they're not fond of rules... You can quote them, >>disagree with them, glorify or vilify them, but the only thing you >>can't do is ignore them because they change things... they push the >>human race forward, and while some may see them as the crazy ones, we >>see genius, because the ones who are crazy enough to think that they >>can change the world, are the ones who do.â€Â  - Steve Jobs >> >> >> >> >> >> >> >> >> >> > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 I hope you didn't discourage many people because I did not take that from what you said, Sue! Interesting about earlier identification. It is odd how we do have " standards " for what marks typical development. Have you noticed how often, when a child is deviating from that, people (school people) are quick to dismiss that sign. You then hear: Boys are slower to develop All the kids in my class this year seem to be delayed in doing that some kids just take longer and on and on. I often have wondered why we have these profiles for normal development if we don't make use of them. I don't think we have to run in and tie the kid up and whisk them off to a facility for help. lol. But it would be important, IMO, to have early intervention mean more than just intervening for severely affected kids. If the problem is not smacking someone in the face, they tend to delay dealing with it. And from my own experience, that has never helped the problem. I feel like this more since my youngest ds went through school and early intervention and " they system " in general. I think he did improve a lot due to getting help. But sometimes. although he did qualify for the help, he only really got help because I pushed it. People were always telling me to wait and see if it didn't improve on it's own and I was very quick to let them know that I would be fighting this to the end of the earth if they did not deal with it now. I wished I had known to do that when my oldest first got to school and for the rest. Anyway, now my ds is doing fine and will only be dx'd with " dyslexia " and not with AS. I think mostly this is because he was not as severely affected and also that he had early intervention. Even within the dyslexia issues, the school people wanted to poo-pooh the problems. And they were very good at minimizing the problems and trying to play to my desire not to have a child with any problems. Imagine if I were a first time parent in that situation? He would be getting F's in school and told he is lazy every day instead of now being correctly evaluated, dx'd and getting the therapies he will need. I think this kind of thing happens a lot for kids with AS because it is not an " in your face " problem sometimes or it is . But even with my two other ds's who have HFA, they had obvious in your face delays and I still got some of that nonsense. I don't know. I think we give lip service to early intervention for anyone who does not have an obvious disability. And for the kids who are mildly affected by whatever problems they have, early intervention could actually make all the difference for their successful outcome and future independence. I know it comes down to money. But the little help you provide early means less costly services later. I don't think bureaucratic institutions can figure that out. I think I am officially rambling now. But it's been a long weekend/week at my house. Anyway, I always like hearing from you. We have some mom's on here with older kids and it's nice to hear what you all think too. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure > > > > > > Do people who can't even talk or communicate have aspergers? I think > > > she is referring to aspergers only--as this is an aspergers group. > > > Asperger children are even above high functioning autism on the > > > spectrum. They are completely independent as adults and do not have the > > > issues that other lower spectrum children have. > > > So I think she is referring to Aspergers--not the children who can't > > > communicate or participate. > > > > > > Purrs & Kisses, > > > Kristal of Digi Kitty > > > The Kitty who loves Digi! > > > Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > > > Â > > > Â > > > Â > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 I do hope you don't feel I am laughing at you. I am not at all. I don't think you are silly. Everyone has an opinion. I think my fascination with this topic is more "technical" than personal. It comes up here on the list every so often and it is usually the same conversation too. I keep waiting for someone to express why they think it's great that their kid has AS with words that make some sense! usually, people will go on to say that AS people invented the world. But even that does not make sense. And there is no data backing it up either. Your post was the first to say that you preferred it because otherwise, he would have worse problems. But overall, most people who feel this way seem to think having AS is who their kid is or they/their kid identifies with that so much that it becomes "WHO" they are entirely or so much who they are that it cannot be separated from anything else about them. I find it fascinating to have people do that but I don't understand why exactly. I get some parts of it. Someone just told me it might be more about belonging to a group or getting attention, in that regard. And now that I think that over, that makes some sense to me. I think many adults who did well enough otherwise, decide they have AS now because it does create a sudden group to belong to. I've never asked though because they will just yell at me for asking. I once was on a list where an adult decided to self-dx herself with AS. I was there when she was just another parent like the rest of us. But she "came out" and that was not unusual. What was unusual is that her posting became more and more confused. Before too long (over the course of a few months time) her posts turned into this sort of cave man type language which she attributed to having autism. I guess once she embraced her inner autism, she decided it was also causing her to be unable to speak/write English. ?? Who knows. It puzzled me a lot! I still don't get it and finally decided she was full of it. I could literally cut and paste a post from months before with one from a date months later and you would swear the same person had not written both posts, yet she had. At any rate, I didn't know having autism at age 40 suddenly took over your ability to write in coherent sentences where before you could write and express yourself just fine! And then, what was even more unusual, nobody mentioned it. Everyone carried on as if nothing was going on. Finally, I could not stand it another minute and I had to ask her what was going on. You'd think I called her a horrible name or something the way people attacked me for asking. All I wanted to know was why she was writing that way and I didn't insult or say anything else - just that she used to write fine and now she can't and what was going on? And wow, I got hate mail. I was "not accepting of people with autism" and on and on it went. But here I am thinking the woman could be having a stroke and losing function, half her brain cells dying while we all ignore it and nobody wants to mention it for fear of saying something isn't wonderful about having autism. So I told people if she were having a stroke, we'd be in awe of how wonderful I was to ask. lol. I'd be on some tv show being interviewed for helping a total stranger over the internet who was suffering and needed medical help. lol. Nobody agreed, sadly enough. <g> But anyway, the person went on to write poems and books about having autism, cannot talk in a normal sentence any longer and people adore everything she says (once they translate it into English, that is.) She gives talks all the time now as a person with autism. She was an advocate for kids with autism one day, an invalid who couldn't function with autism the next. It was hard to keep up. And nobody thinks it's odd except me, I guess. Ok, well, a highly regarded person in the community shared an email with me privately once saying he so totally got my point. So I knew I wasn't totally in left field. And my father was an expert in languages and I sent posts to him to see what he thought as well before I had even asked her if anything was wrong. But I think most people just refused to ask outloud because it would just get them hammered, like it did me. Anyway, I sometimes think we go overboard trying to make something bad be something good in an effort to make our kids "feel better" about having a disability. Then it is not just a disability (negative) but becomes a super great wonderful disability so that they feel good about themselves. As a mother, I know how that feels. I want my kids to be happy with who they are. But I guess I am less to one side or the other in that regard. It is a severe disability but I encourage them to focus on what they can do well and work on the areas they have problems with - like with anything. I don't make autism seem like a gift and I don't see it as one. I don't want my kid to wallow in tears that they have it. I am just practical - you have it, this is why it makes things harder, this is why you have therapy, now let's get on with life. I can't imagine telling my kids that they are wonderful because they have autism. I wonder what can I say to my NT kids? They aren't so wonderful because they are "just" normal? I am again, more practical. They are just wonderful, period. Autism is something we deal with but it's not great and we don't give it credit for good things here. In some ways,, though, this topic has created a "sub" group of people - an "autism community" of it's own - where they celebrate having autism like they have been blessed with a prize. There is instant celebrity for some people. And like that lady who suddenly became autistic, they have people love them no matter what they say. The woman had instant friends the moment she said she had autism. Nobody says, "Wait a minute but that doesn't make any sense...." because we can't tell someone with autism that they are not correct. We can't question someone who has autism about anything they say. And here I come along...if it doesn't make sense, it doesn't make sense to me. People either explain so I get it or they scream at me for being so mean as to ask or disagree!! Anyway, you didn't scream at me but I don't see disagreeing with someone as a bad thing either. People are usually very nice on this list and stick to "attacking" the message and debating the ideas. The people who are yelling nasty things are moderated and you never get to see all the posts they write saying things that are not so nice. And usually, it's nasty things about me anyway. Mostly though, this topic rouses up strong feelings in people and that tends to make the conversation a lot more heated that usual. Anyway, hang in there. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure >> >> >> >> >> >> >> >> >>Do people who can't even talk or communicate have aspergers? I think >>she is referring to aspergers only--as this is an aspergers group. >>Asperger children are even above high functioning autism on the >>spectrum. They are completely independent as adults and do not have >the >>issues that other lower spectrum children have. >>So I think she is referring to Aspergers--not the children who can't >>communicate or participate. >> >> >> >> >>Purrs & Kisses, >>Kristal of Digi Kitty >>The Kitty who loves Digi! >>Designer for the VDBC "More" Team - you can see my designs HERE!!! >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>I somehow have lost the thread to this and was going torespond to >>Roxanna’s comment that if there was a cure for autism shewould go for >>it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. >>We all love our children and we all will say we lovethem as they are. >>But to say you wouldn’t want them cured of autismif that was possible >>is just as silly as saying you wouldn’t want yourchild cured if they >>had __________ (fill in the blank: diabetes, cancer,deafness, >>blindness, the list could go on and on). Many of us on thisgroup have >>kids who are older and we have spent years and years on >>therapies,support, medications, and continue to see our kids struggle. >>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>be nice as Ican think of much more appropriate, though less politically >>correct, language). >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>the round pegs in the square holes... the ones who see >>thingsdifferently -- they're not fond of rules... You can quote them, >>disagree withthem, glorify or vilify them, but the only thing you can't >>do is ignore thembecause they change things... they push the human race >>forward, and while somemay see them as the crazy ones, we see genius, >>because the ones who are crazyenough to think that they can change the >>world, are the ones who do.†- Steve Jobs >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>the round pegs in the square holes... the ones who see things >>differently -- they're not fond of rules... You can quote them, >>disagree with them, glorify or vilify them, but the only thing you >>can't do is ignore them because they change things... they push the >>human race forward, and while some may see them as the crazy ones, we >>see genius, because the ones who are crazy enough to think that they >>can change the world, are the ones who do.†- Steve Jobs >> >> >> >> >> >> >> >> >> >> >> > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 that is odd too. Either she was receiving therapy that was working or the tests were not accurate. My younger ds, for instance, improved in his verbal scores over the years due to intensive therapies focusing on that area. But they were always lower than performance scores and still are. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure Do people who can't even talk or communicate have aspergers? I think she is referring to aspergers only--as this is an aspergers group. Asperger children are even above high functioning autism on the spectrum. They are completely independent as adults and do not have the issues that other lower spectrum children have. So I think she is referring to Aspergers--not the children who can't communicate or participate. Purrs & Kisses, Kristal of Digi Kitty The Kitty who loves Digi! Designer for the VDBC "More" Team - you can see my designs HERE!!! I somehow have lost the thread to this and was going torespond to Roxanna’s comment that if there was a cure for autism shewould go for it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. We all love our children and we all will say we lovethem as they are. But to say you wouldn’t want them cured of autismif that was possible is just as silly as saying you wouldn’t want yourchild cured if they had __________ (fill in the blank: diabetes, cancer,deafness, blindness, the list could go on and on). Many of us on thisgroup have kids who are older and we have spent years and years on therapies,support, medications, and continue to see our kids struggle. So, to sayyou wouldn’t want your child cured is silly (I am trying to be nice as Ican think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, thetroublemakers, the round pegs in the square holes... the ones who see thingsdifferently -- they're not fond of rules... You can quote them, disagree withthem, glorify or vilify them, but the only thing you can't do is ignore thembecause they change things... they push the human race forward, and while somemay see them as the crazy ones, we see genius, because the ones who are crazyenough to think that they can change the world, are the ones who do.†- Steve Jobs “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs -- -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 Roxanna – this makes me think of the story “The Emperor’s New Clothes†– LOL. I am sure you remember this story – he went around naked saying he had new clothes and everyone was afraid to contradict him and just kept telling him how wonderful he looked. (I think he was finally “outed†by a child.) From: [mailto: ] On Behalf Of Roxanna Sent: Thursday, June 10, 2010 1:15 PM Subject: Re: ( ) Cure I do hope you don't feel I am laughing at you. I am not at all. I don't think you are silly. Everyone has an opinion. I think my fascination with this topic is more " technical " than personal. It comes up here on the list every so often and it is usually the same conversation too. I keep waiting for someone to express why they think it's great that their kid has AS with words that make some sense! usually, people will go on to say that AS people invented the world. But even that does not make sense. And there is no data backing it up either. Your post was the first to say that you preferred it because otherwise, he would have worse problems. But overall, most people who feel this way seem to think having AS is who their kid is or they/their kid identifies with that so much that it becomes " WHO " they are entirely or so much who they are that it cannot be separated from anything else about them. I find it fascinating to have people do that but I don't understand why exactly. I get some parts of it. Someone just told me it might be more about belonging to a group or getting attention, in that regard. And now that I think that over, that makes some sense to me. I think many adults who did well enough otherwise, decide they have AS now because it does create a sudden group to belong to. I've never asked though because they will just yell at me for asking. I once was on a list where an adult decided to self-dx herself with AS. I was there when she was just another parent like the rest of us. But she " came out " and that was not unusual. What was unusual is that her posting became more and more confused. Before too long (over the course of a few months time) her posts turned into this sort of cave man type language which she attributed to having autism. I guess once she embraced her inner autism, she decided it was also causing her to be unable to speak/write English. ?? Who knows. It puzzled me a lot! I still don't get it and finally decided she was full of it. I could literally cut and paste a post from months before with one from a date months later and you would swear the same person had not written both posts, yet she had. At any rate, I didn't know having autism at age 40 suddenly took over your ability to write in coherent sentences where before you could write and express yourself just fine! And then, what was even more unusual, nobody mentioned it. Everyone carried on as if nothing was going on. Finally, I could not stand it another minute and I had to ask her what was going on. You'd think I called her a horrible name or something the way people attacked me for asking. All I wanted to know was why she was writing that way and I didn't insult or say anything else - just that she used to write fine and now she can't and what was going on? And wow, I got hate mail. I was " not accepting of people with autism " and on and on it went. But here I am thinking the woman could be having a stroke and losing function, half her brain cells dying while we all ignore it and nobody wants to mention it for fear of saying something isn't wonderful about having autism. So I told people if she were having a stroke, we'd be in awe of how wonderful I was to ask. lol. I'd be on some tv show being interviewed for helping a total stranger over the internet who was suffering and needed medical help. lol. Nobody agreed, sadly enough. <g> But anyway, the person went on to write poems and books about having autism, cannot talk in a normal sentence any longer and people adore everything she says (once they translate it into English, that is.) She gives talks all the time now as a person with autism. She was an advocate for kids with autism one day, an invalid who couldn't function with autism the next. It was hard to keep up. And nobody thinks it's odd except me, I guess. Ok, well, a highly regarded person in the community shared an email with me privately once saying he so totally got my point. So I knew I wasn't totally in left field. And my father was an expert in languages and I sent posts to him to see what he thought as well before I had even asked her if anything was wrong. But I think most people just refused to ask outloud because it would just get them hammered, like it did me. Anyway, I sometimes think we go overboard trying to make something bad be something good in an effort to make our kids " feel better " about having a disability. Then it is not just a disability (negative) but becomes a super great wonderful disability so that they feel good about themselves. As a mother, I know how that feels. I want my kids to be happy with who they are. But I guess I am less to one side or the other in that regard. It is a severe disability but I encourage them to focus on what they can do well and work on the areas they have problems with - like with anything. I don't make autism seem like a gift and I don't see it as one. I don't want my kid to wallow in tears that they have it. I am just practical - you have it, this is why it makes things harder, this is why you have therapy, now let's get on with life. I can't imagine telling my kids that they are wonderful because they have autism. I wonder what can I say to my NT kids? They aren't so wonderful because they are " just " normal? I am again, more practical. They are just wonderful, period. Autism is something we deal with but it's not great and we don't give it credit for good things here. In some ways,, though, this topic has created a " sub " group of people - an " autism community " of it's own - where they celebrate having autism like they have been blessed with a prize. There is instant celebrity for some people. And like that lady who suddenly became autistic, they have people love them no matter what they say. The woman had instant friends the moment she said she had autism. Nobody says, " Wait a minute but that doesn't make any sense.... " because we can't tell someone with autism that they are not correct. We can't question someone who has autism about anything they say. And here I come along...if it doesn't make sense, it doesn't make sense to me. People either explain so I get it or they scream at me for being so mean as to ask or disagree!! Anyway, you didn't scream at me but I don't see disagreeing with someone as a bad thing either. People are usually very nice on this list and stick to " attacking " the message and debating the ideas. The people who are yelling nasty things are moderated and you never get to see all the posts they write saying things that are not so nice. And usually, it's nasty things about me anyway. Mostly though, this topic rouses up strong feelings in people and that tends to make the conversation a lot more heated that usual. Anyway, hang in there. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure >> >> >> >> >> >> >> >> >>Do people who can't even talk or communicate have aspergers? I think >>she is referring to aspergers only--as this is an aspergers group. >>Asperger children are even above high functioning autism on the >>spectrum. They are completely independent as adults and do not have >the >>issues that other lower spectrum children have. >>So I think she is referring to Aspergers--not the children who can't >>communicate or participate. >> >> >> >> >>Purrs & Kisses, >>Kristal of Digi Kitty >>The Kitty who loves Digi! >>Designer for the VDBC " More " Team - you can see my designs HERE!!! >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>I somehow have lost the thread to this and was going torespond to >>Roxanna’s comment that if there was a cure for autism shewould go for >>it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. >>We all love our children and we all will say we lovethem as they are. >>But to say you wouldn’t want them cured of autismif that was possible >>is just as silly as saying you wouldn’t want yourchild cured if they >>had __________ (fill in the blank: diabetes, cancer,deafness, >>blindness, the list could go on and on). Many of us on thisgroup have >>kids who are older and we have spent years and years on >>therapies,support, medications, and continue to see our kids struggle. >>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>be nice as Ican think of much more appropriate, though less politically >>correct, language). >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>the round pegs in the square holes... the ones who see >>thingsdifferently -- they're not fond of rules... You can quote them, >>disagree withthem, glorify or vilify them, but the only thing you can't >>do is ignore thembecause they change things... they push the human race >>forward, and while somemay see them as the crazy ones, we see genius, >>because the ones who are crazyenough to think that they can change the >>world, are the ones who do.†- Steve Jobs >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>the round pegs in the square holes... the ones who see things >>differently -- they're not fond of rules... You can quote them, >>disagree with them, glorify or vilify them, but the only thing you >>can't do is ignore them because they change things... they push the >>human race forward, and while some may see them as the crazy ones, we >>see genius, because the ones who are crazy enough to think that they >>can change the world, are the ones who do.†- Steve Jobs >> >> >> >> >> >> >> >> >> >> >> > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 , Don't give up all hope. Sometimes we focus on what they want and can't have and then we can miss what we are practically tripping over!! I know with my older ds (21 yo, hfa, dyslexia), I imagined he would be living in my basement forever. Well, ok, he still might be there forever. <g> But he actually latched on to a talent that he has and we didn't know he has. (Not until he was about 19 yo!!) So while it's not instant success here, we finally have a new direction to work towards, new possibilities. And while your dd may never be able to be a vet, she might make a great vet assistant or work in a pet care center for abandoned pets - or heck, she may find a calling in a totally different field that has not yet been discovered! So just keep going forward and doing what you can to help her! And don't feel too bad if the vet idea doesn't happen. It might lead to another idea or another field of work entirely. Help her learn skills she needs to live independently and be a good worker. Try to find things that interest her other than the vet idea - she might discover she enjoys so many other things as well. Keep looking! Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure >> >>Do people who can't even talk or communicate have aspergers? I think >>she is referring to aspergers only--as this is an aspergers group. >>Asperger children are even above high functioning autism on the >>spectrum. They are completely independent as adults and do not have the >>issues that other lower spectrum children have. >>So I think she is referring to Aspergers--not the children who can't >>communicate or participate. >> >>Purrs & Kisses, >>Kristal of Digi Kitty >>The Kitty who loves Digi! >>Designer for the VDBC "More" Team - you can see my designs HERE!!! >> >>Â >>Â >>Â >> > > > > -- Sent from my mobile device -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 my thought was actually vet assistant b/c if her sister becomes a vet she may need an assistant, my other thought was animal boarding, etc But even though she feels she wants vetrinary i was thinking she may be more suited for business, very concrete thinking, rules oriented and not worried so much about the social aspect may make her a very objective/unbiased person to be able to use in things involving finance, yk. but it is still sad to think that she has a dream she probably will be unable to obtain On Thu, Jun 10, 2010 at 2:36 PM, Roxanna <MadIdeas@...> wrote: ,Don't give up all hope. Sometimes we focus on what they want and can't have and then we can miss what we are practically tripping over!! I know with my older ds (21 yo, hfa, dyslexia), I imagined he would be living in my basement forever. Well, ok, he still might be there forever. <g> But he actually latched on to a talent that he has and we didn't know he has. (Not until he was about 19 yo!!) So while it's not instant success here, we finally have a new direction to work towards, new possibilities. And while your dd may never be able to be a vet, she might make a great vet assistant or work in a pet care center for abandoned pets - or heck, she may find a calling in a totally different field that has not yet been discovered! So just keep going forward and doing what you can to help her! And don't feel too bad if the vet idea doesn't happen. It might lead to another idea or another field of work entirely. Help her learn skills she needs to live independently and be a good worker. Try to find things that interest her other than the vet idea - she might discover she enjoys so many other things as well. Keep looking! Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure>>>>Do people who can't even talk or communicate have aspergers? I think >>she is referring to aspergers only--as this is an aspergers group.>>Asperger children are even above high functioning autism on the>>spectrum. They are completely independent as adults and do not have the >>issues that other lower spectrum children have.>>So I think she is referring to Aspergers--not the children who can't>>communicate or participate.>>>>Purrs & Kisses, >>Kristal of Digi Kitty>>The Kitty who loves Digi!>>Designer for the VDBC " More " Team - you can see my designs HERE!!!>>>>Â>>Â>>Â>> >>>>-- Sent from my mobile device-mommy to Emma, Becca, ,, , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 -- -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 Oh. We just moved from Redland Bay Qld last year so I know where that is.We are in Melbourne now. Good to have another Aussie only because sometimes things don't apply. KelI will keep climbing the mountain.Sent from Kel's iPhone On 10/06/2010, at 12:04 PM, "miranda.flemming" <miranda.flemming@...> wrote: Ipswich, QLD. Moved here from NZ 3 years ago Miranda > > > > > > > > > > > > > > > > > > I somehow have lost the thread to this and was going torespond to > > > Roxanna's comment that if there was a cure for autism shewould go for > > > it "in a heartbeat, half a heartbeat". I totallyagree with Roxanna. > > > We all love our children and we all will say we lovethem as they are. > > > But to say you wouldn't want them cured of autismif that was possible > > > is just as silly as saying you wouldn't want yourchild cured if they > > > had __________ (fill in the blank: diabetes, cancer,deafness, > > > blindness, the list could go on and on). Many of us on thisgroup have > > > kids who are older and we have spent years and years on > > > therapies,support, medications, and continue to see our kids struggle. > > > So, to sayyou wouldn't want your child cured is silly (I am trying to > > > be nice as Ican think of much more appropriate, though less politically > > > correct, language). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > "Here's to the crazy ones, the misfits, the rebels, thetroublemakers, > > > the round pegs in the square holes... the ones who see > > > thingsdifferently -- they're not fond of rules... You can quote them, > > > disagree withthem, glorify or vilify them, but the only thing you can't > > > do is ignore thembecause they change things... they push the human race > > > forward, and while somemay see them as the crazy ones, we see genius, > > > because the ones who are crazyenough to think that they can change the > > > world, are the ones who do." - Steve Jobs > > > > > > > > > > > > "Here's to the crazy ones, the misfits, the rebels, the troublemakers, > > > the round pegs in the square holes... the ones who see things > > > differently -- they're not fond of rules... You can quote them, > > > disagree with them, glorify or vilify them, but the only thing you > > > can't do is ignore them because they change things... they push the > > > human race forward, and while some may see them as the crazy ones, we > > > see genius, because the ones who are crazy enough to think that they > > > can change the world, are the ones who do." - Steve Jobs > > > > > > > > > > > > > > > > > "Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do." - Steve Jobs > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 LOL, I hadn't thought of that but yes, it is very much the same story. I am still amazed at how she got so famous. I figured if I ever ran out of money, I could do that and become famous and say things in odd ways. lol. File away for future career consideration and hope nobody like me shows up to say, "Hey, I can't see any clothes!" Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure >> >> >> >> >> >> >> >> >>Do people who can't even talk or communicate have aspergers? I think >>she is referring to aspergers only--as this is an aspergers group. >>Asperger children are even above high functioning autism on the >>spectrum. They are completely independent as adults and do not have >the >>issues that other lower spectrum children have. >>So I think she is referring to Aspergers--not the children who can't >>communicate or participate. >> >> >> >> >>Purrs & Kisses, >>Kristal of Digi Kitty >>The Kitty who loves Digi! >>Designer for the VDBC "More" Team - you can see my designs HERE!!! >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>I somehow have lost the thread to this and was going torespond to >>Roxanna’s comment that if there was a cure for autism shewould go for >>it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. >>We all love our children and we all will say we lovethem as they are. >>But to say you wouldn’t want them cured of autismif that was possible >>is just as silly as saying you wouldn’t want yourchild cured if they >>had __________ (fill in the blank: diabetes, cancer,deafness, >>blindness, the list could go on and on). Many of us on thisgroup have >>kids who are older and we have spent years and years on >>therapies,support, medications, and continue to see our kids struggle. >>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>be nice as Ican think of much more appropriate, though less politically >>correct, language). >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>the round pegs in the square holes... the ones who see >>thingsdifferently -- they're not fond of rules... You can quote them, >>disagree withthem, glorify or vilify them, but the only thing you can't >>do is ignore thembecause they change things... they push the human race >>forward, and while somemay see them as the crazy ones, we see genius, >>because the ones who are crazyenough to think that they can change the >>world, are the ones who do.†- Steve Jobs >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>the round pegs in the square holes... the ones who see things >>differently -- they're not fond of rules... You can quote them, >>disagree with them, glorify or vilify them, but the only thing you >>can't do is ignore them because they change things... they push the >>human race forward, and while some may see them as the crazy ones, we >>see genius, because the ones who are crazy enough to think that they >>can change the world, are the ones who do.†- Steve Jobs >> >> >> >> >> >> >> >> >> >> >> > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 No i don't feel you are laughing at me just one me the others called us silly because we wouldn't say we wanted a so called cure for our kids, i can completely understand some parents wanting that and it is fine, but to call my opinion silly was wrong on her part, i didn't say she was silly or wrong, she is entitled to her opinion. Just as we all are. Roxanna <MadIdeas@...> wrote: >LOL, I hadn't thought of that but yes, it is very much the same story. I am still amazed at how she got so famous. I figured if I ever ran out of money, I could do that and become famous and say things in odd ways. lol. File away for future career consideration and hope nobody like me shows up to say, " Hey, I can't see any clothes! " > > > > > >Roxanna >Whenever I feel blue, I start breathing again. > > > > > > Re: ( ) Cure >>> >>> >>> >>> >>> >>> >>> >>> >>>Do people who can't even talk or communicate have aspergers? I think >>>she is referring to aspergers only--as this is an aspergers group. >>>Asperger children are even above high functioning autism on the >>>spectrum. They are completely independent as adults and do not have >>the >>>issues that other lower spectrum children have. >>>So I think she is referring to Aspergers--not the children who can't >>>communicate or participate. >>> >>> >>> >>> >>>Purrs & Kisses, >>>Kristal of Digi Kitty >>>The Kitty who loves Digi! >>>Designer for the VDBC " More " Team - you can see my designsHERE!!! >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>I somehow have lost the thread to this and was going torespond to >>>Roxanna’s comment that if there was a cure for autism shewould go for >>>it “in a heartbeat, half a heartbeatâ€. I totallyagree withRoxanna. >>>We all love our children and we all will say we lovethem as theyare. >>>But to say you wouldn’t want them cured of autismif that was possible >>>is just as silly as saying you wouldn’t want yourchild cured if they >>>had __________ (fill in the blank: diabetes, cancer,deafness, >>>blindness, the list could go on and on). Many of us on thisgrouphave >>>kids who are older and we have spent years and years on >>>therapies,support, medications, and continue to see our kids >struggle. >>>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>>be nice as Ican think of much more appropriate, though less >politically >>>correct, language). >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>>the round pegs in the square holes... the ones who see >>>thingsdifferently -- they're not fond of rules... You can quote them, >>>disagree withthem, glorify or vilify them, but the only thing you >can't >>>do is ignore thembecause they change things... they push the human >race >>>forward, and while somemay see them as the crazy ones, we see genius, >>>because the ones who are crazyenough to think that they can change the >>>world, are the ones who do.†- Steve Jobs >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>>the round pegs in the square holes... the ones who see things >>>differently -- they're not fond of rules... You can quote them, >>>disagree with them, glorify or vilify them, but the only thing you >>>can't do is ignore them because they change things... they push the >>>human race forward, and while some may see them as the crazy ones, we >>>see genius, because the ones who are crazy enough to think that they >>>can change the world, are the ones who do.†- SteveJobs >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >> >> >> >> >> >> > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 I've just applied for a carer's allowance from Centrelink. The questionaire was so stupid! Think it's 50/50 chance whether we get it or not. Oh, well, worth a shot. Miranda > > > > > > > > > > > > > > > > > > > > > > > > I somehow have lost the thread to this and was going torespond to > > > > Roxanna's comment that if there was a cure for autism shewould go for > > > > it " in a heartbeat, half a heartbeat " . I totallyagree with Roxanna. > > > > We all love our children and we all will say we lovethem as they are. > > > > But to say you wouldn't want them cured of autismif that was possible > > > > is just as silly as saying you wouldn't want yourchild cured if they > > > > had __________ (fill in the blank: diabetes, cancer,deafness, > > > > blindness, the list could go on and on). Many of us on thisgroup have > > > > kids who are older and we have spent years and years on > > > > therapies,support, medications, and continue to see our kids struggle. > > > > So, to sayyou wouldn't want your child cured is silly (I am trying to > > > > be nice as Ican think of much more appropriate, though less politically > > > > correct, language). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " Here's to the crazy ones, the misfits, the rebels, thetroublemakers, > > > > the round pegs in the square holes... the ones who see > > > > thingsdifferently -- they're not fond of rules... You can quote them, > > > > disagree withthem, glorify or vilify them, but the only thing you can't > > > > do is ignore thembecause they change things... they push the human race > > > > forward, and while somemay see them as the crazy ones, we see genius, > > > > because the ones who are crazyenough to think that they can change the > > > > world, are the ones who do. " - Steve Jobs > > > > > > > > > > > > > > > > " Here's to the crazy ones, the misfits, the rebels, the troublemakers, > > > > the round pegs in the square holes... the ones who see things > > > > differently -- they're not fond of rules... You can quote them, > > > > disagree with them, glorify or vilify them, but the only thing you > > > > can't do is ignore them because they change things... they push the > > > > human race forward, and while some may see them as the crazy ones, we > > > > see genius, because the ones who are crazy enough to think that they > > > > can change the world, are the ones who do. " - Steve Jobs > > > > > > > > > > > > > > > > > > > > > > > > " Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do. " - Steve Jobs > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 could she work in a vet diagnostics lab? (eg animal microbiology/disease identification). That would be very procedure driven and low social contact. Miranda > > > Sue, That was so correct!!! > > > I've watched several young HFA adults who do have jobs (with a job > > coach) > > > and you described them to a T. Some work in fast food places washing > > > dishes & pots, cleaning the tables & bathrooms and mopping the floors. > > > this one guy - He can drive but he can't answer the phone and take an > > > order. Even thou he wants to so bad and he tries but messes up every > > > order. his boss and job coach both told him he can't never answer the > > > phone. how sad he was. he see's others can do it without any problems > > and > > > gets the order right. Even helps the customers with their own order. > > this > > > young man can't. he doesn't know how to approach his boss for another > > > position in his job nor does he know how to apply for a different job. so > > he > > > stays there doing the job he learned. he can only do one assignment at > > a > > > time. he knows what he learned and that's it - he's comfortable. He > > lives > > > with both parents. When he was younger his parents thought > > > things would be so much better for him when he's an adult. he also has a > > > high IQ and he can drive. how hard can a job be..... They never > > expected > > > this for their son. another young man can't drive nor does he want to. > > he > > > lives in a group home because he can't pay bills and needs reminders to > > do > > > laundry, wash himself and getting to his job and home. He can't > > understand > > > how to take the bus & put the correct money in. He doesn't pay attention > > to > > > his stop. He can't ride the bus... He needs to do the same routine every > > > day and if its changed he needs one on one help with his job coach. all > > of > > > these young men (except this last one) want more. They see how simple > > > others can do their job without any help and know just what to do. They > > are > > > HFA yet put in the same group as others that have more needs than them. > > > When the job coach comes in with the boss to check on them they are all > > in > > > that same group and the HFA's know the > > > difference between their group and the other typical workers. they know > > > the typical workers don't have a job coach and are expected to do > > > more. they know they are different and know enough to want to be like > > their > > > typical co-workers. > > > The autism is holding them back. You describe these young adults to the > > T. > > > I have to tell you, their are these two young adults that live in a group > > > home. Both can't drive or hold a job. they are married. They do their > > > laundry together in a laundry matt. The person that runs the group home > > > drives the group to the laundry matt and shopping. this couple needs > > help > > > with the shopping but they can do their laundry on their own with a few > > > concerns. When they put a $20.00 bill in the coin machine. They > > only took > > > a few quarters to put into the washing machine and left the rest of the > > > change in the coin machine. (I didn't know this at that time) When the > > next > > > person came in she put her money in the coin machine not knowing their > > > change was still in there. (neither did I) that caused a problem and > > this > > > couple didn't know how to handle it. (It wasn't until then that I > > realized > > > what happened). because the couple yelled - that's my > > > money!!! They tried to explain but the lady only understood when she saw > > > all that change...At First, that lady was arguing that she just put $5.00 > > in > > > the machine. That's my money she said - get away!!!!! it was a good > > thing > > > that woman just counted out her $5.00 in change and gave the rest back to > > > that couple. How difficult was that! I agree, without the autism life > > would > > > be that much different for them. > > > you explained your post so well and I know these job coaches would agree. > > > Best luck to you and your son > > > Rose > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Comtois <suetois@... <suetois%40cox.net>> > > > < %40> > > > Sent: Tue, June 8, 2010 8:03:37 PM > > > Subject: ( ) Re: Cure > > > > > > > > > My almost 19yo son has AS. He's never had any sort of verbal delay, and > > he > > > has a *very* high IQ. But he's not going to be leading an independent > > life > > > as an adult for a long time--if ever. He needs to be our ward (and is > > happy > > > to be so) because he can't handle major decisions for himself. He can't > > > find a doctor or an apartment, navigate college, be responsible for > > > remembering to do important things, or do many other things that a > > typical > > > person of his age can do if they absolutely have to. He probably won't > > ever > > > be able to drive because he processes events slowly and startles rather > > than > > > reacting appropriately when something unexpected happens. He has earned > > two > > > professional certificates, but is on the waiting list with the Department > > of > > > Rehabilitative Services because he's sufficiently handicapped to qualify > > for > > > job placement and job coaching services--without which he would be unable > > to > > > get or retain a job. (He has no sense of > > > business-appropriat e behavior and doesn't self-edit the sort of comments > > > that will get you fired, so he's going to need an employer who is *very* > > > understanding. ) Something like 70% of adults with AS are under or > > > unemployed because of similar problems. He's never had a friend despite > > the > > > fact that he would dearly love at least one. He probably won't ever > > marry > > > and have a family of his own. We're *hoping* that, with appropriate > > > supports, he'll eventually be able to leave home, but that's years and > > years > > > in the future if ever. > > > > > > I'm also saddened by parents whose children have been diagnosed at 5 or 6 > > > yo, who think that their child has " mild AS. " If a person has mild > > AS--the > > > kind that means they're going to be quirky adults and absent-minded > > > professors-- they're often not diagnosed until they're in junior high and > > > their social deficits have become a problem. (I have another son who has > > AS > > > who's in that category.) If AS is apparent at the age of 5 or 6, it's > > > probably not going to be a " mild case. " It's all about not keeping pace > > > developmentally with chronological peers. None of the 5yos have great > > > social skills, so a mild case isn't even apparent at that age. However, > > as > > > typical children become more socially competent, kids with AS lag farther > > > and farther behind. If you can already see that lag at a very early age > > > it's a pretty good indication that you're not dealing with a mild case of > > > AS. > > > > > > As far as the need for a cure goes, my feeling is that if, as an adult, > > you > > > have AS and you can take care of yourself, you probably don't need a > > > cure--although you might want one anyway because it would simplify life a > > > great deal. If you don't need friends or a family of your own, then > > you're > > > not going to be bothered by their absence and you probably don't need a > > > cure. If, however, you want a family, your spouse is going to have to do > > > the heavy lifting in the relationship if it's going to succeed. My > > husband > > > has AS, so I have some experience with this. If you have AS, and it > > means > > > you can't hold a job and have to depend on your family, social services, > > or > > > the kindness of strangers as an adult rather than taking care of > > yourself, > > > then you're being selfish and deluding yourself if you think you're > > simply > > > " different. " > > > > > > Sue > > > > > > Re: Cure > > >>Posted by: " Roxanna " MadIdeasaol (DOT) com roxannaneely > > >>Tue Jun 8, 2010 2:12 pm (PDT) > > >> > > >> > > >> > > >>Well, if that is true then she is wrong. This is a group for parents > > >>whose kids have AS and HFA. (My two ds's have HFA and not AS) We are > > >>not an " AS only " group. Also, AS people are not guaranteed completely > > >>independent lives as adults at all either. If they were all going to > > >>do fine as adults, then I can see how one wouldn't be that worried and > > >>how one might think having AS was just a " different way of thinking. " > > >>However, that is not true at all. > > >> > > >>Also, autism is a spectrum disorder but that does not mean there is a > > >>menu of problems that only certain people have within the spectrum. > > >>Rather, it means they all have the same core problems with varying > > >>severity. > > >> > > >>Roxanna > > >>Whenever I feel blue, I start breathing again. > > >> > > >> Re: ( ) Cure > > >> > > >>Do people who can't even talk or communicate have aspergers? I think > > >>she is referring to aspergers only--as this is an aspergers group. > > >>Asperger children are even above high functioning autism on the > > >>spectrum. They are completely independent as adults and do not have the > > >>issues that other lower spectrum children have. > > >>So I think she is referring to Aspergers--not the children who can't > > >>communicate or participate. > > >> > > >>Purrs & Kisses, > > >>Kristal of Digi Kitty > > >>The Kitty who loves Digi! > > >>Designer for the VDBC " More " Team - you can see my designs HERE!!! > > >> > > >>Â > > >>Â > > >>Â > > >> > > > > > > > > > > > > > > > > -- > > Sent from my mobile device > > > > -mommy to Emma, Becca, , > > , , and baby girl no name (yeah I know, nothing new, does > > ever pick a name in a timely manner?) July 2010 > > > > > > > > > > -- > -mommy to Emma, Becca, , > , , and baby girl no name (yeah I know, nothing new, does ever > pick a name in a timely manner?) July 2010 > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 2010 I think my first big clue was when he screamed when we sang happy birthday at his first birthday party and would cry when we sang songs at his playgroup. I first thought it was his hearing until I started googling about sound sensitivities. By the time he turned three and still hadn't outgrown any of it and was starting to get obsessed about maps and geography, I was pretty sure I knew what it was. Unfortunately I had no idea how to go about finding a diagnosis and it took a long time to sort through doctors that diagnosed him with all sorts of things things along the way. > > > > > > My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important things, or do many other things that a typical person of his age can do if they absolutely have to. He probably won't ever be able to drive because he processes events slowly and startles rather than reacting appropriately when something unexpected happens. He has earned two professional certificates, but is on the waiting list with the Department of Rehabilitative Services because he's sufficiently handicapped to qualify for job placement and job coaching services--without which he would be unable to get or retain a job. (He has no sense of business-appropriate behavior and doesn't self-edit the sort of comments that will get you fired, so he's going to need an employer who is *very* understanding.) Something like 70% of adults with AS are under or unemployed because of similar problems. He's never had a friend despite the fact that he would dearly love at least one. He probably won't ever marry and have a family of his own. We're *hoping* that, with appropriate supports, he'll eventually be able to leave home, but that's years and years in the future if ever. > > > > > > I'm also saddened by parents whose children have been diagnosed at 5 or 6 yo, who think that their child has " mild AS. " If a person has mild AS--the kind that means they're going to be quirky adults and absent-minded professors--they're often not diagnosed until they're in junior high and their social deficits have become a problem. (I have another son who has AS who's in that category.) If AS is apparent at the age of 5 or 6, it's probably not going to be a " mild case. " It's all about not keeping pace developmentally with chronological peers. None of the 5yos have great social skills, so a mild case isn't even apparent at that age. However, as typical children become more socially competent, kids with AS lag farther and farther behind. If you can already see that lag at a very early age it's a pretty good indication that you're not dealing with a mild case of AS. > > > > > > As far as the need for a cure goes, my feeling is that if, as an adult, you have AS and you can take care of yourself, you probably don't need a cure--although you might want one anyway because it would simplify life a great deal. If you don't need friends or a family of your own, then you're not going to be bothered by their absence and you probably don't need a cure. If, however, you want a family, your spouse is going to have to do the heavy lifting in the relationship if it's going to succeed. My husband has AS, so I have some experience with this. If you have AS, and it means you can't hold a job and have to depend on your family, social services, or the kindness of strangers as an adult rather than taking care of yourself, then you're being selfish and deluding yourself if you think you're simply " different. " > > > > > > Sue > > > > > > > Re: Cure > > > > Posted by: " Roxanna " MadIdeas@ roxannaneely > > > > Tue Jun 8, 2010 2:12 pm (PDT) > > > > > > > > > > > > > > > > > > > > Well, if that is true then she is wrong. This is a group for parents > > > > whose kids have AS and HFA. (My two ds's have HFA and not AS) We are > > > > not an " AS only " group. Also, AS people are not guaranteed completely > > > > independent lives as adults at all either. If they were all going to > > > > do fine as adults, then I can see how one wouldn't be that worried and > > > > how one might think having AS was just a " different way of thinking. " > > > > However, that is not true at all. > > > > > > > > Also, autism is a spectrum disorder but that does not mean there is a > > > > menu of problems that only certain people have within the spectrum. > > > > Rather, it means they all have the same core problems with varying > > > > severity. > > > > > > > > Roxanna > > > > Whenever I feel blue, I start breathing again. > > > > > > > > Re: ( ) Cure > > > > > > > > Do people who can't even talk or communicate have aspergers? I think > > > > she is referring to aspergers only--as this is an aspergers group. > > > > Asperger children are even above high functioning autism on the > > > > spectrum. They are completely independent as adults and do not have the > > > > issues that other lower spectrum children have. > > > > So I think she is referring to Aspergers--not the children who can't > > > > communicate or participate. > > > > > > > > Purrs & Kisses, > > > > Kristal of Digi Kitty > > > > The Kitty who loves Digi! > > > > Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > > > > > Â > > > > Â > > > > Â > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 11, 2010 I apllied and revived it no worries. You will be fine. I will keep climbing the mountain.Sent from Kel's iPhone On 11/06/2010, at 10:03 AM, "miranda.flemming" <miranda.flemming@...> wrote: I've just applied for a carer's allowance from Centrelink. The questionaire was so stupid! Think it's 50/50 chance whether we get it or not. Oh, well, worth a shot. Miranda > > > > > > > > > > > > > > > > > > > > > > > > I somehow have lost the thread to this and was going torespond to > > > > Roxanna's comment that if there was a cure for autism shewould go for > > > > it "in a heartbeat, half a heartbeat". I totallyagree with Roxanna. > > > > We all love our children and we all will say we lovethem as they are. > > > > But to say you wouldn't want them cured of autismif that was possible > > > > is just as silly as saying you wouldn't want yourchild cured if they > > > > had __________ (fill in the blank: diabetes, cancer,deafness, > > > > blindness, the list could go on and on). Many of us on thisgroup have > > > > kids who are older and we have spent years and years on > > > > therapies,support, medications, and continue to see our kids struggle. > > > > So, to sayyou wouldn't want your child cured is silly (I am trying to > > > > be nice as Ican think of much more appropriate, though less politically > > > > correct, language). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > "Here's to the crazy ones, the misfits, the rebels, thetroublemakers, > > > > the round pegs in the square holes... the ones who see > > > > thingsdifferently -- they're not fond of rules... You can quote them, > > > > disagree withthem, glorify or vilify them, but the only thing you can't > > > > do is ignore thembecause they change things... they push the human race > > > > forward, and while somemay see them as the crazy ones, we see genius, > > > > because the ones who are crazyenough to think that they can change the > > > > world, are the ones who do." - Steve Jobs > > > > > > > > > > > > > > > > "Here's to the crazy ones, the misfits, the rebels, the troublemakers, > > > > the round pegs in the square holes... the ones who see things > > > > differently -- they're not fond of rules... You can quote them, > > > > disagree with them, glorify or vilify them, but the only thing you > > > > can't do is ignore them because they change things... they push the > > > > human race forward, and while some may see them as the crazy ones, we > > > > see genius, because the ones who are crazy enough to think that they > > > > can change the world, are the ones who do." - Steve Jobs > > > > > > > > > > > > > > > > > > > > > > > > "Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do." - Steve Jobs > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 11, 2010 I hear you, Debra. I have stayed out of the discussion, but what I feel is this. I would never take away the things that make my ds funny and smart and creative. Maybe. I would take away the things that make her life a struggle, and I would take them away in a heartbeat. Wouldn't any parent? From: dlbalke@...Date: Tue, 8 Jun 2010 18:26:11 -0700Subject: Re: ( ) Re: Cure All this talk about cure. I have only been following casually the messages posted. But, all I can think when I see all these messages is that I do want a cure. This is a debilitating problem. Can we just cure the negatives and keep the positives? I'm all for that! ( ) Re: Cure Well said, good points, Sue! >> My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 11, 2010 I love it, Robin. I have asked by DD if she's lonely and wishes she had more friends and she tells me no, and I can tell she means it. I'M the one who wants her to have more friends Hotmail is redefining busy with tools for the New Busy. Get more from your inbox. See how. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 11, 2010 Reading all these posts with the negatives and positives that we see in our kids or that our kids are going though........well.....therein lies the problem of "would we cure them or not"... Do you, as an individual, feel that AS has only put negative components into your childs life? If you believe that without AS, the "good stuff" would still be there, then HELL YES, you want a cure. If you believe that there are certain traits your kid has BECAUSE of AS, then.....depending on the "severity" of it, you may choose to keep it. It's soooo personal. Maybe too personal to be asking in such a "blanket" way, ya know? Attack and enjoy every minute of life. Try everything.....protect everything. Robin From: Barbara Pinckney <b-pinckney@...>Subject: RE: ( ) CureAspergers Treatment Date: Friday, June 11, 2010, 3:11 PM I love it, Robin. I have asked by DD if she's lonely and wishes she had more friends and she tells me no, and I can tell she means it. I'M the one who wants her to have more friends Hotmail is redefining busy with tools for the New Busy. Get more from your inbox. See how. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 13, 2010 I think it is a bit more than that. Most parents would not want their kids to have a disability. If you have an unusual POV, you are bound to get a little flack for it. It is hard to understand a parent who would want their kid to have a disability. So I think that is where the "silly" came in. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure >>> >>> >>> >>> >>> >>> >>> >>> >>>Do people who can't even talk or communicate have aspergers? I think >>>she is referring to aspergers only--as this is an aspergers group. >>>Asperger children are even above high functioning autism on the >>>spectrum. They are completely independent as adults and do not have >>the >>>issues that other lower spectrum children have. >>>So I think she is referring to Aspergers--not the children who can't >>>communicate or participate. >>> >>> >>> >>> >>>Purrs & Kisses, >>>Kristal of Digi Kitty >>>The Kitty who loves Digi! >>>Designer for the VDBC "More" Team - you can see my designsHERE!!! >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>I somehow have lost the thread to this and was going torespond to >>>Roxanna’s comment that if there was a cure for autism shewould go for >>>it “in a heartbeat, half a heartbeatâ€. I totallyagree withRoxanna. >>>We all love our children and we all will say we lovethem as theyare. >>>But to say you wouldn’t want them cured of autismif that was possible >>>is just as silly as saying you wouldn’t want yourchild cured if they >>>had __________ (fill in the blank: diabetes, cancer,deafness, >>>blindness, the list could go on and on). Many of us on thisgrouphave >>>kids who are older and we have spent years and years on >>>therapies,support, medications, and continue to see our kids >struggle. >>>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>>be nice as Ican think of much more appropriate, though less >politically >>>correct, language). >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>>the round pegs in the square holes... the ones who see >>>thingsdifferently -- they're not fond of rules... You can quote them, >>>disagree withthem, glorify or vilify them, but the only thing you >can't >>>do is ignore thembecause they change things... they push the human >race >>>forward, and while somemay see them as the crazy ones, we see genius, >>>because the ones who are crazyenough to think that they can change the >>>world, are the ones who do.†- Steve Jobs >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>>the round pegs in the square holes... the ones who see things >>>differently -- they're not fond of rules... You can quote them, >>>disagree with them, glorify or vilify them, but the only thing you >>>can't do is ignore them because they change things... they push the >>>human race forward, and while some may see them as the crazy ones, we >>>see genius, because the ones who are crazy enough to think that they >>>can change the world, are the ones who do.†- SteveJobs >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >> >> >> >> >> >> > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 13, 2010 I think my POV comes from the fact that I work with the SERVERLY disabled, most are considered mild to severe MR, IQ less than 70 are a requirement of people who become our clients. However we have clients that do not live in group homes that are on our independant living program, where staff goes into thier homes a certian amount of hours per week and works on goals with them, all of the clients on this program carry jobs, can ither drive (we have very few who drive) can catch a bus, ride a bike or walk to destinations. We attened thier doctors appointments with them, but they answer doctors questions. I guess what I am getting at is most of the Aspegers individuals I have met are much higher functioning than the 200 clients I work with, and if half our our clients can work, learn and play. Some of our clients that live in group homes also have jobs, and while they are not the best jobs, they make the best of it. I feel my son has a chance without a cure. I would so rather focus on a cure for Autism at a low function level, downs, birds ect. My son has it so much better than the people I work with, that may sound bad coming from his mother, but it is the truth, now not all of the asperger kids may be in the same situation as Zach, but he likes who he is, I love who he is, and we are all just making the best of what could have been a really bad situation. He wants no pitty he wants no easy outs, He is 10 and wants to go to Harvard, and he is the type of kid that make things happen when he sets his mind to it (due to the lovley obssesion sympom of Aspergers) LOL! >>> >>> >>> >>> >>> >>>I somehow have lost the thread to this and was going torespond to >>>Roxanna’s comment that if there was a cure for autism shewould go for >>>it “in a heartbeat, half a heartbeatâ€. I totallyagree withRoxanna. >>>We all love our children and we all will say we lovethem as theyare. >>>But to say you wouldn’t want them cured of autismif that was possible >>>is just as silly as saying you wouldn’t want yourchild cured if they >>>had __________ (fill in the blank: diabetes, cancer,deafness, >>>blindness, the list could go on and on). Many of us on thisgrouphave >>>kids who are older and we have spent years and years on >>>therapies,support, medications, and continue to see our kids >struggle. >>>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>>be nice as Ican think of much more appropriate, though less >politically >>>correct, language). >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>>the round pegs in the square holes... the ones who see >>>thingsdifferently -- they're not fond of rules... You can quote them, >>>disagree withthem, glorify or vilify them, but the only thing you >can't >>>do is ignore thembecause they change things... they push the human >race >>>forward, and while somemay see them as the crazy ones, we see genius, >>>because the ones who are crazyenough to think that they can change the >>>world, are the ones who do.†- Steve Jobs >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>>the round pegs in the square holes... the ones who see things >>>differently -- they're not fond of rules... You can quote them, >>>disagree with them, glorify or vilify them, but the only thing you >>>can't do is ignore them because they change things... they push the >>>human race forward, and while some may see them as the crazy ones, we >>>see genius, because the ones who are crazy enough to think that they >>>can change the world, are the ones who do.†- SteveJobs >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >> >> >> >> >> >> > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 14, 2010 I don't think because some people have it worse, that means you can't wish to not have a disability yourself. ly, I was still attending doc appt's with my ds until very recently AND I had to do the talking for him as well. I think if it was a serious problem, I'd still have to go in with him and talk. He has figured out how to do the simple, "I have an ear ache" discussion, though. I think the level of independence is variable for all these kids so if yours can do everything fine, then obviously you are lucky. Also, at age 10, I caution you that you have so much ahead of you yet that it may not seem so rosy someday. If you sail through the next 12 years and have no problems, then kudos to you and him. Nothing has been easy for my kids. Also, I love my kids and who they are too. They are really cool kids. But if I could take away a severe disability to make things easier for them, I would. It limits them severely and affects the quality of their lives and the choices they have available to them. It's not the same thing as "liking who you are." I don't know why that gets thrown in to this discussion. But at any rate, you don't have to get in line for the cure because I have two with HFA and will take a double dose. Not that there will be extra's laying around, that is for sure. I often think that people who love their kid having AS have kids who have more of a "personality" type of AS and not the actual disability, which is considered by definition to be "severe". What is "birds, btw?" As for a cure for only severe autism, I would argue against that as well. It's a no-brainer to help people who have severe disabilities and who will always need help. But helping people with milder forms of a disability is no less important and can have a great impact on their lives - going from disability to independent functioning and not needing any supports. to me, anyway, that is a major difference for someone no matter where they started on the "I can't function without help" ladder Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 14, 2010 Um, what is "birds"? "Over-optimism is waiting for you ship to come in when you haven't sent one out." From: Amber <evans.amber77@...> Sent: Sun, June 13, 2010 10:57:54 PMSubject: Re: ( ) Cure I think my POV comes from the fact that I work with the SERVERLY disabled, most are considered mild to severe MR, IQ less than 70 are a requirement of people who become our clients. However we have clients that do not live in group homes that are on our independant living program, where staff goes into thier homes a certian amount of hours per week and works on goals with them, all of the clients on this program carry jobs, can ither drive (we have very few who drive) can catch a bus, ride a bike or walk to destinations. We attened thier doctors appointments with them, but they answer doctors questions. I guess what I am getting at is most of the Aspegers individuals I have met are much higher functioning than the 200 clients I work with, and if half our our clients can work, learn and play. Some of our clients that live in group homes also have jobs, and while they are not the best jobs, they make the best of it. I feel my son has a chance without a cure. I would so rather focus on a cure for Autism at a low function level, downs, birds ect. My son has it so much better than the people I work with, that may sound bad coming from his mother, but it is the truth, now not all of the asperger kids may be in the same situation as Zach, but he likes who he is, I love who he is, and we are all just making the best of what could have been a really bad situation. He wants no pitty he wants no easy outs, He is 10 and wants to go to Harvard, and he is the type of kid that make things happen when he sets his mind to it (due to the lovley obssesion sympom of Aspergers) LOL! >>> >>> >>> >>> >>> >>>I somehow have lost the thread to this and was going torespond to >>>Roxanna’s comment that if there was a cure for autism shewould go for >>>it “in a heartbeat, half a heartbeatâ€. I totallyagree withRoxanna. >>>We all love our children and we all will say we lovethem as theyare. >>>But to say you wouldn’t want them cured of autismif that was possible >>>is just as silly as saying you wouldn’t want yourchild cured if they >>>had __________ (fill in the blank: diabetes, cancer,deafness, >>>blindness, the list could go on and on). Many of us on thisgrouphave >>>kids who are older and we have spent years and years on >>>therapies,support, medications, and continue to see our kids >struggle. >>>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>>be nice as Ican think of much more appropriate, though less >politically >>>correct, language). >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>>the round pegs in the square holes... the ones who see >>>thingsdifferently -- they're not fond of rules... You can quote them, >>>disagree withthem, glorify or vilify them, but the only thing you >can't >>>do is ignore thembecause they change things... they push the human >race >>>forward, and while somemay see them as the crazy ones, we see genius, >>>because the ones who are crazyenough to think that they can change the >>>world, are the ones who do.†- Steve Jobs >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>>the round pegs in the square holes... the ones who see things >>>differently -- they're not fond of rules... You can quote them, >>>disagree with them, glorify or vilify them, but the only thing you >>>can't do is ignore them because they change things... they push the >>>human race forward, and while some may see them as the crazy ones, we >>>see genius, because the ones who are crazy enough to think that they >>>can change the world, are the ones who do.†- SteveJobs >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >> >> >> >> >> >> > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 14, 2010 I hear ya, Amber. I worked at The Arc and after seeing how "bad" it could be,,,,,,,it made me almost feel bad to say that we had it rough. Attack and enjoy every minute of life. Try everything.....protect everything. Robin >>> >>> >>> >>> >>> >>>I somehow have lost the thread to this and was going torespond to >>>Roxanna’s comment that if there was a cure for autism shewould go for >>>it “in a heartbeat, half a heartbeatâ€. I totallyagree withRoxanna. >>>We all love our children and we all will say we lovethem as theyare. >>>But to say you wouldn’t want them cured of autismif that was possible >>>is just as silly as saying you wouldn’t want yourchild cured if they >>>had __________ (fill in the blank: diabetes, cancer,deafness, >>>blindness, the list could go on and on). Many of us on thisgrouphave >>>kids who are older and we have spent years and years on >>>therapies,support, medications, and continue to see our kids >struggle. >>>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>>be nice as Ican think of much more appropriate, though less >politically >>>correct, language). >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>>the round pegs in the square holes... the ones who see >>>thingsdifferently -- they're not fond of rules... You can quote them, >>>disagree withthem, glorify or vilify them, but the only thing you >can't >>>do is ignore thembecause they change things... they push the human >race >>>forward, and while somemay see them as the crazy ones, we see genius, >>>because the ones who are crazyenough to think that they can change the >>>world, are the ones who do.†- Steve Jobs >>> >>> >>> >>>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>>the round pegs in the square holes... the ones who see things >>>differently -- they're not fond of rules... You can quote them, >>>disagree with them, glorify or vilify them, but the only thing you >>>can't do is ignore them because they change things... they push the >>>human race forward, and while some may see them as the crazy ones, we >>>see genius, because the ones who are crazy enough to think that they >>>can change the world, are the ones who do.†- SteveJobs >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >> >> >> >> >> >> > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
