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Re: RE: Rett list

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In a message dated 5/9/2003 3:05:15 PM Eastern Daylight Time,

tychobrahe@... writes:

> I'm

> also sure that it goes both ways: doctors probably have plenty of

> horror stories of patients and family members of patients who insist

> they know what they're talking about, but actually don't.

Yes, that was why I said for the *most part* most of them seemed like

medically trained mindless monkeys. Key point was for the most part. There

are a few who are decent medical people but for the most part that was my

general opinion of them. Somehow I don't find it slanderous speaking in

general my opinion.

I can only speak of my experiences as I have no idea whet others to go by.

From what I have seen there are quite a few Rett children with autistic

disorders but with physical problems. Respiratory, gastrointestinal,

handwringers and seizures. Basically what is seen in severe autistic usually

and many of them have siblings with autism. I am actually the only autistic

parent with a Rett daughter. But I am going to find out as much as I can

about the gastrointestinal and colon problems on my own. I didn't even think

I was being mean or rude in any way. It was so frustrating to try to figure

out what I said that was conceived as rude or unacceptable. Apparently I

insulted doctors is what I'm told. But I was only stating an opinion on my

experience with them. I don't see how it can be considered slanderous by

stating an opinion that many doctors can do undo damage as they flounder

about. I mean that is my experience with them. They put me on drugs that

made me sick my head got big like in dentist chair. And then I developed

tourette's Syndrome. I felt like an experiment under treatment most of the

time. So how is it slanderous when I am only speaking my truthdom and my

opinion. I can't fake thinking a high opinion of doctor's when I'm afraid of

any of them coming near me or my child person. I am very afraid of doctors.

I know of no other experiences but my experiences about them and I am trying

to fix Nicollette's problems without going to the hospital because I'm afraid

they'll lock us up and tie us to chairs like they did when I was a child

person. And I get so anxious whenever I see someone with a lab coat and I'm

afraid they'll put all kinds of drugs into Nicollette and hurt her more. I

just can't reason out my fear of doctors and hospitals. I just wanted to see

what could be done about her issues in some way without involving doctors.

Because whenever I see a labcoat my hair stands up and I wet my pants and I

feel like running, getting out of there fast. Getting out.. Getting out

before they catch me. And maybe I can become like wind and they'll never get

me. Never hurt me again. I can't help it. I just wet my pants. I'm a bad

girl.

Juli ASD mother to Nicollette Rett Syndrome w/autism

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In a message dated 5/10/2003 6:27:23 AM Eastern Daylight Time,

gprobertson@... writes:

> Aww this is so common. my friend just got booted off the autism-mercury

> list for the same reason, even though a lot of people did not want him

> booted. I just got shafted on an australian chat for the same thing, and i

> have come to the conclusion that particiapating in mixed fora is a form of

> self injury for me. this is a pity, because i do not really think

> exclusion is a good idea. dunno what else to do, because i cant stand

> pain.

My sister is on that list. Her son is PDD-Nos and her sister and neice,well

myself and Nicollette. and she mentioned something about that. Was he

? She mentioned an and people got upset with him. But she

always like to hear what he had to say. I wonder if its the same person.

Well, my nephew gets slammed all the time by saying things like " wow. You

really are fat. " or " You know, you really smell badly. It is making me

nauseous. Can you please shower so as not to be so offensive to my senses.

I am also sure it bothers other people. Why they haven't said anything is

beyond me. "

Haha. He has a good vocabulary for only being four, don't you think? But

people find him offensive and rude. and say things like what they would do to

make him watch what he says. Which makes no sense how can he watch what he

says if he is talking? I can watch what I say because I post and don't talk.

But he talks. How can he visually watch what he says? I don't understand a

lot of things. But I do understand my nephew and I do understand my

daughter. Other people seem crazy to me. Like we are talking another

language.

Juli ASD mother to Nicollette Rett Syndrome w/autism

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In a message dated 5/10/2003 1:37:19 PM Eastern Daylight Time,

ascaris1@... writes:

> FWIW, the AutAdvo list is mixed, but it's not run by an NT... ;)

>

Thankfully....

Juli ASD mother to Nicollette Rett Syndrome w/autism

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gprobertson@... wrote:

> Aww this is so common. my friend just got booted off the autism-mercury list

> for the same reason, even though a lot of people did not want him booted. I

> just got shafted on an australian chat for the same thing, and i have come to

> the conclusion that particiapating in mixed fora is a form of self injury for

> me. this is a pity, because i do not really think exclusion is a good idea.

> dunno what else to do, because i cant stand pain.

I have not seen anything from you that I would think would be worthy of booting

you from a NT list. There is such a thing as being too thin-skinned, and I

think a lot of the NTs in the autism community (and elsewhere) are waaay too

sensitive.

FWIW, the AutAdvo list is mixed, but it's not run by an NT... ;)

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