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Cerebral Palsy + DNR order = one pissed off Strapples
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Do you think parents should be allowed to file DNR on a child under the age of 16
YES
15%
 15%  [ 7 ]
NO
84%
 84%  [ 38 ]
Total Votes : 45

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sinsboldly
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PostPosted: Tue Dec 25, 2007 4:56 pm    Post subject: Reply with quote

Strapples wrote:
sinsboldly wrote:
Strapples wrote:
sinsboldly wrote:
Strapples wrote:
skahthic wrote:
I've worked with mentally/physically challenged kids ( and adults). I've worked with the terminally ill, as well.
I do believe in DNR's where appropriate. But not when they are not appropriate.
Katie looks like a smiling, happy girl in the picture. Even I can see that. She does not appear to be suffering in the picture. She may be handicapped, but so are many people. There are many issues here.
If Katie were suffering to the point that resuscitation would only prolong pain/suffering and delay the inevitable ( a death in the near future), I'd say a DNR would be ok. And I HAVE seen kids who have been allowed to die--- but these were kids with terminal cancers/ conditions and such where it would be inhumane to prolong their suffering when death is inevitable. The same goes for adults, too.
Elderly people who "give up" and stop eating ( usually Alzheimer's disease or something similar) and those elderly/not elderly with progressive fatal disorders should also be allowed the right to die if they should wish--- they should also be made aware of the risks involved. CPR done on the ribs of a 97 year old will likely cause multiple fractures of the ribcage and will likely result in hospitalization until death anyway--- reality must be taken into consideration here.
But these are specific instances where CPR/ Resuscitation would have little/no bearing on the outcome and would only prolong pain/suffering.
Katie looks to be happy. She does not appear to be suffering. She has young bones. She does not have a progressive fatal disorder. Why the DNR?


i find this to be a pretty absurd DNR too... the fact its being done on someone so young and viable is not acceptable


Why? Are you of the opinion that a soul only lives one lifetime in a body? Don't you think that colors your response here? If you had another opinion of life and death of the body, don't you think your response might be different?

Merle


i want you to look at that picture... look at it like she is YOUR daughter... i dont know but every time i look at it that way i say i want her to receive any medical care that is necessary provided it does not produce long term bad effects...

she does NOT have a terminal disorder...

terminally ill children DNR ok fine... but when your not terminal and your a child this young a DNR is pretty much unacceptable to me


Yes, you have made your own opinions on the girl in the picture very clear, Strapples. However I asked a question about your life view (i.e. one life in one body per soul vs more than one life in another body per soul) and how it drives your current opinion. If you do not care to address my question that is, of course, perfectly OK.
However to answer my question by offering a response calculated to emotionally manipulate the same conclusion that you arrive at will not actually happen with me because I have a different opinion about life (and death) than you do. And to that difference I was offering the question.

thank you,

Merle


sorry... im not much of a spiritualist... so i cant really answer the question...


oh. Well, I am not a spiritualist either, so I don't know what that has to do with it. I am more of a Buddist/Celtic/Hindu sorta person.

Merle
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PersonalEnigma
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PostPosted: Thu Dec 27, 2007 12:41 am    Post subject: Reply with quote

Well, first of all I am speaking to this from personal experience. My brother had severe CP - not as bad as it gets, but pretty bad. He passed away from heat stroke and pneumonia when he was 19 (I was 17).

Despite having CP he was generally a very positive person who had a great sense of humour and tons of personality. He enjoyed writing stories and went to high school where he audited several courses. He even had a girlfriend Wink If he were give the option of a DNR he would have refused.

On the other hand his life was not easy. He could not eat anything by mouth. He was fed through a J tube (goes in through the stomach wall into the beginning of the small intestine) at night with a machine that slowly added the liquid diet throughout the night. Because of this his stomach was always empty and he often felt as though he was starving. He could not speak at all and needed to either use a bliss board at which he would would look (his only good control was his eyes and somewhat his head) to tell us things (we'd guess where he was looking) or would type things on the computer by using a head switch and a scan (took forever to write a single word). He could not walk, he could not go to the bathroom on his own (had to use a urinal and got an enema daily to take care of other things), and would never be able to even remotely take care of himself.

My parents worked very hard to tale care of my brother. It wasn't easy to say the least. But at least he was intelligent and despite his disabilities he had good health. I don't know how they would have coped if he also was mentally deficient and had other health problems. Certainly many of the most severe cases of CP include problems beyond what my brother had and they were thankful that he wasn't as badly off as many kids they had met.

I don't know what I would do in the situation everyone has been talking about. It depends a lot on the girl's specific issues. The photo that was taken could have been taken a while ago. It could have been on one of her rare "good days" or it could be an accurate picture of what she's normally like. We don't know what complications she has related to her CP - for all we know the muscular issues may extend beyond the voluntary muscular control. We don't know if she has other issues that are not necessarily caused by CP, but are aggrivated by it.

DNRs have their place. There are definitely some situations where a child needs a DNR. On the other hand it should be a last resort when there is really no hope in the long run. NOt knowing all the details it is impossible to say if a DNR is right in this situation.

As for offering to adopt this girl - you really don't know what you are suggesting. Caring for a child with severe CP is NOT easy. This girl is in school for a variety of reasons - one is to give the parents a break, another is to give this girl as "normal" a life as possible. Keeping her home to homeschool her would be pointless. I do not in any way think that these parents are trying to get out of caring for their daughter. I am sure that they have her best interests in mind. They may be wrong, but they most likely have the right reasons in their hearts. Having CP can definitely be a painful, unpleasant life. My brother used to vomit 6-10 times a day every day due to reflux issues that even corrective surgery couldn't completely fix. He often felt as though he was startving to death, even though he was getting enough nutrients for his bodily needs. Many other people with CP get severe cramping due to their tense muscle tone. And then there is the fact that with severe CP there is no privacy in life - nothing about your bodily functions is private.

There isn't a lot of future available for a person with severe CP. Maybe as technology improves that may change, but for now it is still almost impossible for a person with severe CP to have anything close to a normal life. Certainly they can live for many years and they don't normally deteriorate, but it isn't easy either.
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Strapples
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PostPosted: Thu Dec 27, 2007 9:05 am    Post subject: Reply with quote

sinsboldly wrote:
Strapples wrote:
sinsboldly wrote:
Strapples wrote:
sinsboldly wrote:
Strapples wrote:
skahthic wrote:
I've worked with mentally/physically challenged kids ( and adults). I've worked with the terminally ill, as well.
I do believe in DNR's where appropriate. But not when they are not appropriate.
Katie looks like a smiling, happy girl in the picture. Even I can see that. She does not appear to be suffering in the picture. She may be handicapped, but so are many people. There are many issues here.
If Katie were suffering to the point that resuscitation would only prolong pain/suffering and delay the inevitable ( a death in the near future), I'd say a DNR would be ok. And I HAVE seen kids who have been allowed to die--- but these were kids with terminal cancers/ conditions and such where it would be inhumane to prolong their suffering when death is inevitable. The same goes for adults, too.
Elderly people who "give up" and stop eating ( usually Alzheimer's disease or something similar) and those elderly/not elderly with progressive fatal disorders should also be allowed the right to die if they should wish--- they should also be made aware of the risks involved. CPR done on the ribs of a 97 year old will likely cause multiple fractures of the ribcage and will likely result in hospitalization until death anyway--- reality must be taken into consideration here.
But these are specific instances where CPR/ Resuscitation would have little/no bearing on the outcome and would only prolong pain/suffering.
Katie looks to be happy. She does not appear to be suffering. She has young bones. She does not have a progressive fatal disorder. Why the DNR?


i find this to be a pretty absurd DNR too... the fact its being done on someone so young and viable is not acceptable


Why? Are you of the opinion that a soul only lives one lifetime in a body? Don't you think that colors your response here? If you had another opinion of life and death of the body, don't you think your response might be different?

Merle


i want you to look at that picture... look at it like she is YOUR daughter... i dont know but every time i look at it that way i say i want her to receive any medical care that is necessary provided it does not produce long term bad effects...

she does NOT have a terminal disorder...

terminally ill children DNR ok fine... but when your not terminal and your a child this young a DNR is pretty much unacceptable to me


Yes, you have made your own opinions on the girl in the picture very clear, Strapples. However I asked a question about your life view (i.e. one life in one body per soul vs more than one life in another body per soul) and how it drives your current opinion. If you do not care to address my question that is, of course, perfectly OK.
However to answer my question by offering a response calculated to emotionally manipulate the same conclusion that you arrive at will not actually happen with me because I have a different opinion about life (and death) than you do. And to that difference I was offering the question.

thank you,

Merle


sorry... im not much of a spiritualist... so i cant really answer the question...


oh. Well, I am not a spiritualist either, so I don't know what that has to do with it. I am more of a Buddist/Celtic/Hindu sorta person.

Merle


i am completely non religious... i just celebrate hanukkah and christmas because my mom is jewish and dad is catholic... but i dont go to church or any of that...
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Strapples
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PostPosted: Thu Dec 27, 2007 9:15 am    Post subject: Reply with quote

PersonalEnigma wrote:
Well, first of all I am speaking to this from personal experience. My brother had severe CP - not as bad as it gets, but pretty bad. He passed away from heat stroke and pneumonia when he was 19 (I was 17).

Despite having CP he was generally a very positive person who had a great sense of humour and tons of personality. He enjoyed writing stories and went to high school where he audited several courses. He even had a girlfriend Wink If he were give the option of a DNR he would have refused.

On the other hand his life was not easy. He could not eat anything by mouth. He was fed through a J tube (goes in through the stomach wall into the beginning of the small intestine) at night with a machine that slowly added the liquid diet throughout the night. Because of this his stomach was always empty and he often felt as though he was starving. He could not speak at all and needed to either use a bliss board at which he would would look (his only good control was his eyes and somewhat his head) to tell us things (we'd guess where he was looking) or would type things on the computer by using a head switch and a scan (took forever to write a single word). He could not walk, he could not go to the bathroom on his own (had to use a urinal and got an enema daily to take care of other things), and would never be able to even remotely take care of himself.

My parents worked very hard to tale care of my brother. It wasn't easy to say the least. But at least he was intelligent and despite his disabilities he had good health. I don't know how they would have coped if he also was mentally deficient and had other health problems. Certainly many of the most severe cases of CP include problems beyond what my brother had and they were thankful that he wasn't as badly off as many kids they had met.

I don't know what I would do in the situation everyone has been talking about. It depends a lot on the girl's specific issues. The photo that was taken could have been taken a while ago. It could have been on one of her rare "good days" or it could be an accurate picture of what she's normally like. We don't know what complications she has related to her CP - for all we know the muscular issues may extend beyond the voluntary muscular control. We don't know if she has other issues that are not necessarily caused by CP, but are aggrivated by it.

DNRs have their place. There are definitely some situations where a child needs a DNR. On the other hand it should be a last resort when there is really no hope in the long run. NOt knowing all the details it is impossible to say if a DNR is right in this situation.

As for offering to adopt this girl - you really don't know what you are suggesting. Caring for a child with severe CP is NOT easy. This girl is in school for a variety of reasons - one is to give the parents a break, another is to give this girl as "normal" a life as possible. Keeping her home to homeschool her would be pointless. I do not in any way think that these parents are trying to get out of caring for their daughter. I am sure that they have her best interests in mind. They may be wrong, but they most likely have the right reasons in their hearts. Having CP can definitely be a painful, unpleasant life. My brother used to vomit 6-10 times a day every day due to reflux issues that even corrective surgery couldn't completely fix. He often felt as though he was startving to death, even though he was getting enough nutrients for his bodily needs. Many other people with CP get severe cramping due to their tense muscle tone. And then there is the fact that with severe CP there is no privacy in life - nothing about your bodily functions is private.

There isn't a lot of future available for a person with severe CP. Maybe as technology improves that may change, but for now it is still almost impossible for a person with severe CP to have anything close to a normal life. Certainly they can live for many years and they don't normally deteriorate, but it isn't easy either.


there are too many personal references for me to create a generalized response though there is something i will respond to...

"There isn't a lot of future available for a person with severe CP. Maybe as technology improves that may change, but for now it is still almost impossible for a person with severe CP to have anything close to a normal life. Certainly they can live for many years and they don't normally deteriorate, but it isn't easy either" appalls me... i have a progressive condition (probably SMA) that is very quickly advancing. and i will likely be in a very similar situation to severe CP. that does not mean im going to sit there in my powerchair thinking "theres no future theres no future" there is a future for EVERYONE, people with diseases and disabilities like SMA and CP just have to work a lot harder to CREATE a future for themselves, unlike normal people who can go out and "get" a future we have to CREATE one from thin air.
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eScential
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PostPosted: Thu Dec 27, 2007 8:02 pm    Post subject: Reply with quote

I voted 'no' but for infants and maybe up to 5, I think the parents need that right. They won't always use the right properly, yet they are in the position to choose. The right should not be allow in cases where it is for parental convenience as it appears in this case. Any child that can reason and provide input into quality of life issues, should be allowed to choose life.
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Strapples
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PostPosted: Thu Dec 27, 2007 8:07 pm    Post subject: Reply with quote

eScential wrote:
I voted 'no' but for infants and maybe up to 5, I think the parents need that right. They won't always use the right properly, yet they are in the position to choose. The right should not be allow in cases where it is for parental convenience as it appears in this case. Any child that can reason and provide input into quality of life issues, should be allowed to choose life.


personally your opinion changes me SLIGHTLY... i think that DNRs should not be easy to acquire like this... they should be put through the court and a full grand jury (50 randomly selected people from the public impartial to the situation) shall be put up to vote along with the judge...
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TheZ
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PostPosted: Thu Dec 27, 2007 8:46 pm    Post subject: Reply with quote

Strapples wrote:
mmaestro wrote:
Strapples wrote:
then if it is progressing then it is NOT cerebral palsy... CEREBRAL PALSY IS A STATIC BRAIN DISORDER THAT DOES NOT CHANGE OR PROGRESS...

What did I ever do without Wikipedia? OK, I did a quick skim over CP stuff, and yes, you're right. But, secondary symptoms caused by muscles not being exercised, incorrect bone formation, etc. do occur, and those can progress. Speculating here, but as the article mentions that she's more susceptible to infection, barely able to move, has to be fed through a tube into her stomach (and being unable to ambulate yourself or feed yourself is a risk factor in having a significantly decreased life expectancy), it may simply be the case that complications make her life expectancy only another year or two. I don't know, I'm not her doctor - but neither are you.

well thank you very much... now your trying to say my life expectancy is going to be significantly lower because i cant move much for myself. and i soon will have to have a feeding tube... and soon wont be able to move at all in a matter of a few years... my girlfriend had the same thing as this girl... shes lived to be 16 and still living strong and healthy with major assistance. i am extremely suceptible to infection too, in fact i usually get more than 4 upper respiratory infections per year. and im still alive... incorrect bone formation can be corrected through proper orthoses... i believe these parents do not know all the arrays of therapies and treatments available for CP


He was just stating statistics, did you know 9 months after major power outages there are more births?
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TheZ
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PostPosted: Thu Dec 27, 2007 8:50 pm    Post subject: Reply with quote

Strapples wrote:
hyperbolic wrote:
I am generally in favor of people deciding to put a Do Not Resuscitate order on themselves. This case is different because the girl was a minor and her parents, not her, made the decision to put a DNR order on her.

While I may not have all the facts in the case, if the girl's condition had progressed to a point where a) she was more debilitated than ever before and b) no longer conscious of reality, the girl's parents may well have acted in the best interests of the girl. They are her parents, who gave birth to her, and under those circumstances, they would be best qualified to make that decision.

However, if the girl had simply gone unconscious and there was a high chance that she could have been resuscitated and thereafter returned to her prior state for the most part, and back to consciousness, a decision not to resuscitate would have, in my opinion, been a major error. If you had a broken arm and your parents didn't like your suffering from that broken arm, and you somehow fell unconscious, and they pulled the plug, so to speak, just so that you would not suffer from that broken arm anymore, that is what it would have been like. If it is the case that this is what happened, to put it simply, a disabled person went unconscious for a while, and they were allowed to die, for no good reason. CP is just one of a number of disabilities. Yes, it is debilitating, but there are many people living to their fullest with CP.


Your comparing yourself to someone else. Her condition sounds as if its much more serious then yours.

agreed... a DNR on yourself initiated by yourself is perfectly ok... but placing a DNR on a minor and also without receiving any input from that minor is not acceptable...

and this type of DNR is saying that for a simple possible cardiac arrest where a defibbrilator could bring back to normal state prohibits use of a defibbrilator is completely unacceptable... i know vast numbers of people who live a full life even though they have a medical condition, and i am one of them... i dont have no big yellow DNR form on the back of my wheelchair, and nor is a DNR going to ever become one of the accessories on my powerchair...
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TheZ
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PostPosted: Thu Dec 27, 2007 8:56 pm    Post subject: Reply with quote

Strapples wrote:
Gamester wrote:
Strapples wrote:
lucy1 wrote:
If she has the cognizance to decide for herself - she should have the right of autonomy, the choice should be hers, no one elses.

there are occasions when parents do need to decide when to stop life resuscitating interventions - so - in my mind it is not a yes and no answer - for this reason I can't vote in your poll.


i respect your abstainence from the voting procedures...

it is unknown if she has severe cognitive problems, although just knowing from the news record it does not seem like that due to the fact that cerebral palsy its self does not cause cognitive problems...


The one thing I actually wanted to know, which the article didn't seem to state, if it did and I didn't remember, was how hard hitting the cerebal palsy plus other issues was.


however my decision still stands as no DNR at this point... with what limited data we have there does not appear to be any terminal sub condition along with the cerebral palsy... cerebral palsy its self is not a terminal condition although we do not know if she has some sort of acquired sub disorder along with the cerebral palsy... even then i wouldnt have this kind of DNR on her since it prevents basic medical intervention (CPR/Defibbrilator) i could see a DNR like the kind i have on myself that if my CRS (coma recovery scale) score is very low and i am in a coma for more than 6 months to do a full analysis and if results come that it is not likely i will come out of the coma to pull the plug... my DNR is a more sensible one...

i have this girl in my google news alerts so if any more news comes in i will make sure to post an alert here...


Your projecting your situation on it again.
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PostPosted: Thu Dec 27, 2007 9:13 pm    Post subject: Reply with quote

TheZ wrote:
Strapples wrote:
Gamester wrote:
Strapples wrote:
lucy1 wrote:
If she has the cognizance to decide for herself - she should have the right of autonomy, the choice should be hers, no one elses.

there are occasions when parents do need to decide when to stop life resuscitating interventions - so - in my mind it is not a yes and no answer - for this reason I can't vote in your poll.


i respect your abstainence from the voting procedures...

it is unknown if she has severe cognitive problems, although just knowing from the news record it does not seem like that due to the fact that cerebral palsy its self does not cause cognitive problems...


The one thing I actually wanted to know, which the article didn't seem to state, if it did and I didn't remember, was how hard hitting the cerebal palsy plus other issues was.


however my decision still stands as no DNR at this point... with what limited data we have there does not appear to be any terminal sub condition along with the cerebral palsy... cerebral palsy its self is not a terminal condition although we do not know if she has some sort of acquired sub disorder along with the cerebral palsy... even then i wouldnt have this kind of DNR on her since it prevents basic medical intervention (CPR/Defibbrilator) i could see a DNR like the kind i have on myself that if my CRS (coma recovery scale) score is very low and i am in a coma for more than 6 months to do a full analysis and if results come that it is not likely i will come out of the coma to pull the plug... my DNR is a more sensible one...

i have this girl in my google news alerts so if any more news comes in i will make sure to post an alert here...


Your projecting your situation on it again.


you dont see how old that response is do you...
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TheZ
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PostPosted: Fri Dec 28, 2007 2:56 pm    Post subject: Reply with quote

Strapples wrote:
TheZ wrote:
Strapples wrote:
Gamester wrote:
Strapples wrote:
lucy1 wrote:
If she has the cognizance to decide for herself - she should have the right of autonomy, the choice should be hers, no one elses.

there are occasions when parents do need to decide when to stop life resuscitating interventions - so - in my mind it is not a yes and no answer - for this reason I can't vote in your poll.


i respect your abstainence from the voting procedures...

it is unknown if she has severe cognitive problems, although just knowing from the news record it does not seem like that due to the fact that cerebral palsy its self does not cause cognitive problems...


The one thing I actually wanted to know, which the article didn't seem to state, if it did and I didn't remember, was how hard hitting the cerebal palsy plus other issues was.


however my decision still stands as no DNR at this point... with what limited data we have there does not appear to be any terminal sub condition along with the cerebral palsy... cerebral palsy its self is not a terminal condition although we do not know if she has some sort of acquired sub disorder along with the cerebral palsy... even then i wouldnt have this kind of DNR on her since it prevents basic medical intervention (CPR/Defibbrilator) i could see a DNR like the kind i have on myself that if my CRS (coma recovery scale) score is very low and i am in a coma for more than 6 months to do a full analysis and if results come that it is not likely i will come out of the coma to pull the plug... my DNR is a more sensible one...

i have this girl in my google news alerts so if any more news comes in i will make sure to post an alert here...


Your projecting your situation on it again.


you dont see how old that response is do you...


It doesent change that it appears that is what you are doing.
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PostPosted: Fri Dec 28, 2007 2:57 pm    Post subject: Reply with quote

TheZ wrote:
Strapples wrote:
TheZ wrote:
Strapples wrote:
Gamester wrote:
Strapples wrote:
lucy1 wrote:
If she has the cognizance to decide for herself - she should have the right of autonomy, the choice should be hers, no one elses.

there are occasions when parents do need to decide when to stop life resuscitating interventions - so - in my mind it is not a yes and no answer - for this reason I can't vote in your poll.


i respect your abstainence from the voting procedures...

it is unknown if she has severe cognitive problems, although just knowing from the news record it does not seem like that due to the fact that cerebral palsy its self does not cause cognitive problems...


The one thing I actually wanted to know, which the article didn't seem to state, if it did and I didn't remember, was how hard hitting the cerebal palsy plus other issues was.


however my decision still stands as no DNR at this point... with what limited data we have there does not appear to be any terminal sub condition along with the cerebral palsy... cerebral palsy its self is not a terminal condition although we do not know if she has some sort of acquired sub disorder along with the cerebral palsy... even then i wouldnt have this kind of DNR on her since it prevents basic medical intervention (CPR/Defibbrilator) i could see a DNR like the kind i have on myself that if my CRS (coma recovery scale) score is very low and i am in a coma for more than 6 months to do a full analysis and if results come that it is not likely i will come out of the coma to pull the plug... my DNR is a more sensible one...

i have this girl in my google news alerts so if any more news comes in i will make sure to post an alert here...


Your projecting your situation on it again.


you dont see how old that response is do you...


It doesent change that it appears that is what you are doing.


please cease responding to this thread TheZ... this type of response has been seen from you already once... i think you have done this same response 2 times in this thread before and it is starting to get irritating...
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DXED CLASSIC AUTISM HFA 7/10/09
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TheZ
Tufted Titmouse
Tufted Titmouse


Joined: Dec 22, 2007
Posts: 32

PostPosted: Fri Dec 28, 2007 7:35 pm    Post subject: Reply with quote

So I'm not allowed to state my oppinion and you are?
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Strapples
Strapplius, God of straps!
Supporting Member


Joined: Dec 01, 2007
Age: 18
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Location: Chicago Area IL

PostPosted: Fri Dec 28, 2007 7:36 pm    Post subject: Reply with quote

TheZ wrote:
So I'm not allowed to state my oppinion and you are?


no you are repeatedly saying the SAME SENTENCE OVER AND OVER... at least my statment dynamically changes...
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check out my website at http://www.alinssite.info and my forum at http://www.disabledplanet.net and my WP threads by clicking
http://alinssite.iguido.com/Thread_List/Thread_List.html (UPDATE JUN 30 09)

DXED CLASSIC AUTISM HFA 7/10/09
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TheZ
Tufted Titmouse
Tufted Titmouse


Joined: Dec 22, 2007
Posts: 32

PostPosted: Fri Dec 28, 2007 7:43 pm    Post subject: Reply with quote

If you wanna attack me for stating what I appear is happening - go ahead if it makes you feel better.
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