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demoluca
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03 Apr 2008, 6:01 pm

Dear parents,Teachers,Friends, Family and supporters,

I want you to know that I am autistic.I need you to know that I am no disease,I am not sick, I am not ill.There is nothing "wrong" with me.
I feel just as much as any person, even if i do not display in it the "conventional" way.I never "relentlessly sucked the marrow" out of my family.
I have my problems,My quirks, little odd habits that i do, But doesn't anyone have these?

And just who gets to decide what is "normal" and "Abnormal"? and most importantly, who is or is not normal?

"normal" the way I see it, Is very different from person to person.

If a person says "heh" after every sentence,then that would be what they "normally" do.If the same person does not say "heh" after one sentence, then this would be "abnormal behaviour" for that person.

So, if your autistic kid usually flaps there hands for half an hour after watching television, then that is "normal" for them.If they stop for what ever reason,then this would be "abnormal" or "unusual" for that particular child.

But then there are social cues.

As a so-called "normal" human being, you were probably taught very early on to look people in the eye when you speak with them, or to not belch after eating..

But in some parts of japan it is considered impolite to look a person straight in the eye, and in certain areas of Europe you compliment the chef by belching after a meal.

So would it not be fair to say that all those social cues you spend time teaching ANY child, not just an autistic one, that all those social cues would be useless if you left the country or if you were talking to a person from a completly different culture?

Now, i assume you, as a decent and hardworking person would not be racist to such a person, and that you would not mock a different culture or a different belief system and its so called "odd" social rules.

Now, let us imagine that the autism spectrum in itself, is a different culture.A culture where there is an absence of little forgettable social rules, or so much emphasis on the meaning and tone of the voice in words.

wouldn't that be a nice break from the usual social drama?

But any culture has its rules, even if they are not "social" rules, they are still rules.Just these rules are more individual rules.

For example..if your child screams if he/she is touched then its common sense to NOT touch them or try to make them LIKE being touched.

So if you follow those little rules, and those "odd" interest,then soon you'll find your kid is amazing.

It doesn't matter what level of functioning they are at.They could be an LFA with the mentality of two year old,it could be an aspergers prodigy, it doesn't matter.Your kid is amazing.i don't have to even see your kid to know that he or she is amazing.They all are amazing, no matter what.

Now, i suppose that maybe your super fantastic amazing kid has some communication prblems.
don't worry so much about body language.you can learn what they do when they are happy or sad just by watching them.as for teachers, you may always right down what happens if they are happy or sad.
try and focus more on the actual words.This way it might make more sense to your kid.

So now that you have entered the realm and culture of autism, don't worry so much about what other people are saying.
Its not their kid.it's yours.

and lastly,

I truly wish you and your child the best of luck.no matter if you agree or disagree.just remember...autism is a culture.

It's not a deformity.

-----


at some point in the near future i'll post this on the oprah site.

what do you think?


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marlinsgirl
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03 Apr 2008, 7:15 pm

I enjoyed reading that. It truly spoke from the heart. :thumleft:


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03 Apr 2008, 7:36 pm

:hail: I think you should have that published in a newspaper or magazine!! !! ! It is great that you have said that Autism is like a culture of it's own, it is kinda true.



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03 Apr 2008, 7:36 pm

Dear Jenny,

I would like to speak to you Mother to Mother.

I am the mother of 3 sons - 2 diagnosed with Asperger's and the third likely Aspie but not yet diagnosed.

My sons are amazing, fantastic and intelligent. I have accepted them, done heaps of reading, and made friends with many Autistic/Aspie adults.

I strongly recommend you get to know Autistic/Aspie adults. You will find they are an amazing group of people.

The biggest barriers my sons face are:
- lack of acceptance of Autism in the wider community
- lack of understanding about Autism
- lack of appropriate support for people with Autism

I have never had any desire to be famous. However if I had your fame I would use it to promote acceptance, understanding and support for people with Autism.

I strongly recommend you spend a couple of hours per day on wrongplanet.net to find out the truth about Autism.

Regards
Helen

P.S. I also recommend you watch a movie called 'The Black Balloon'. It is a low-budget Australian film starring Toni Collette. This film stars a teenager with Autism. The film promotes acceptance, understanding and support.



Zsazsa
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03 Apr 2008, 7:48 pm

That sounds like a good film..."The Black Balloon." I will have to see it.

Is it a spin-off of the French childrens' film, "The Red Balloon ...which I really loved as a child?



asplanet
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03 Apr 2008, 8:49 pm

demoluca

Thank really enjoyed that I really enjoyed, and agree with what you say. Did you know she does not know any adults on the Autism Spectrum, but is now giving others advice!

If you want to read some of my thoughts or my sons...
Sorry if had enough of this!! ! Jenny McCarthy:
http://asplanet.info/forum/index.php?topic=224.0

Good luck with posting on Orpah fourm, quite often will not post if do not like or any links etc.. But there is an existing thread may be easier to add to:
Oprah.com Community: Jenny McArthy is NOT my Spokesperson ...
http://www.oprah.com/community/thread/15188?tstart=30

I think everyone should flood the Orpah forum and help stop her brain washing others...


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ghostgurl
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03 Apr 2008, 9:01 pm

Good letter. Hopefully she will read it.


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04 Apr 2008, 10:46 am

Dear Jenny McCarthy,

F&ck off.

Signed,

Reality


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04 Apr 2008, 3:06 pm

There must be more than two Jenny McCarthy's out there because the one I know has never spoken negatively about her son nor Autism. She speaks glowingly about her son and her fight to end his seizures and help his Autism symptoms. But, her biggest fight is for doctors to reconsider the vaccine schedule and she said, it doesn't matter what side you're on in the vaccine war, we need to evaluate whether all kids should be on the same schedule.

I don't want to get into any vaccine wars, but I support her in pushing to have the CDC examine whether every child born today should get the mandatory shots at the same time. Or, whether they should be spaced out differently for kids whose immune systems are suppressed, pre-mature, have heart conditions or who are failing to thrive in other areas. It's a timing issue. So, I'm totally behind Jenny here. All she's saying is let's look at our schedule to see if they're adequate for every infant.



dawndeleon
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04 Apr 2008, 3:16 pm

That was a beautiful letter. It gives a lot of insight to life on the spectrum. That is what i always wanted to say to autism speaks. Just listen. let them lead you for a moment. I dare you to look into those 'dead' eyes and not see something there.



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04 Apr 2008, 3:37 pm

Dear Jenny Mac:

Go jump into a pond filled with hydrochloric acid.

Signed,

Autism


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NewportBeachDude
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04 Apr 2008, 4:10 pm

beau99 wrote:
Dear Jenny Mac:

Go jump into a pond filled with hydrochloric acid.

Signed,

Autism



Anytime you post on a thread you can almost guarantee three things from your reply: 1) an insult, 2) a name called or 3) a threat of some sort. For some reason, I'd like to believe that there's more to your character than that.



TLPG
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04 Apr 2008, 5:50 pm

NewportBeachDude wrote:
There must be more than two Jenny McCarthy's out there because the one I know has never spoken negatively about her son nor Autism. She speaks glowingly about her son and her fight to end his seizures and help his Autism symptoms. But, her biggest fight is for doctors to reconsider the vaccine schedule and she said, it doesn't matter what side you're on in the vaccine war, we need to evaluate whether all kids should be on the same schedule.

I don't want to get into any vaccine wars, but I support her in pushing to have the CDC examine whether every child born today should get the mandatory shots at the same time. Or, whether they should be spaced out differently for kids whose immune systems are suppressed, pre-mature, have heart conditions or who are failing to thrive in other areas. It's a timing issue. So, I'm totally behind Jenny here. All she's saying is let's look at our schedule to see if they're adequate for every infant.


The way she is conducting herself is pathetic, Newport. She is coming off as a spoilt brat chucking a tantrum. Now I agree about the issue of the schedule. It's pushing the vaccine usage to a careless level (ie vaccines are fine - but they have to be used correctly). If they are to work they must be applied carefully. I thought it was 26 vaccines in the schedule. To push that in two years will only work if the child is free of viral infections (colds and so forth) throughout that time - and that is nearly impossible.

The trouble is that Jenny - with the way she is conducting herself - is blaming the vaccines. She may say otherwise, but that is the attitude she is presenting.

An attitude that stinks to high heaven.



beau99
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04 Apr 2008, 6:16 pm

NewportBeachDude wrote:
beau99 wrote:
Dear Jenny Mac:

Go jump into a pond filled with hydrochloric acid.

Signed,

Autism



Anytime you post on a thread you can almost guarantee three things from your reply: 1) an insult, 2) a name called or 3) a threat of some sort. For some reason, I'd like to believe that there's more to your character than that.

Many parents of autsitic children agree with me.

Jenny is a b***h.


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NewportBeachDude
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04 Apr 2008, 7:11 pm

TLPG wrote:
NewportBeachDude wrote:
There must be more than two Jenny McCarthy's out there because the one I know has never spoken negatively about her son nor Autism. She speaks glowingly about her son and her fight to end his seizures and help his Autism symptoms. But, her biggest fight is for doctors to reconsider the vaccine schedule and she said, it doesn't matter what side you're on in the vaccine war, we need to evaluate whether all kids should be on the same schedule.

I don't want to get into any vaccine wars, but I support her in pushing to have the CDC examine whether every child born today should get the mandatory shots at the same time. Or, whether they should be spaced out differently for kids whose immune systems are suppressed, pre-mature, have heart conditions or who are failing to thrive in other areas. It's a timing issue. So, I'm totally behind Jenny here. All she's saying is let's look at our schedule to see if they're adequate for every infant.


The way she is conducting herself is pathetic, Newport. She is coming off as a spoilt brat chucking a tantrum. Now I agree about the issue of the schedule. It's pushing the vaccine usage to a careless level (ie vaccines are fine - but they have to be used correctly). If they are to work they must be applied carefully. I thought it was 26 vaccines in the schedule. To push that in two years will only work if the child is free of viral infections (colds and so forth) throughout that time - and that is nearly impossible.

The trouble is that Jenny - with the way she is conducting herself - is blaming the vaccines. She may say otherwise, but that is the attitude she is presenting.

An attitude that stinks to high heaven.


TLPG, I see your point. But, mind if I ask if you a parent? Or, did you put a kid through the vaccines? And, did you and the doctor record their reactions to the vaccines? I can answer "yes" and as a result to some bad reactions, my kids are now on a modified schedule for the rest of their vaccines. It is not impossible. And, babies should not have the cocktails and multiples at once, especially babies who are sick. Some countries don't even start pumping these vaccines into the kids until AFTER the first year of life.

Also, doctors are starting to say the same things. Our own Pedi is not giving the cocktails and multiples IN ONE DAY to infants under 12 mos. as she used to because she said she had so many complaints from parents about the effects of that...babies ending up in the hospital from high fevers and vomiting. And, these complaints are from all parents, not just those of Auties. So, that tells me that there are those in the medical community who think the potency from the multiples is not a good thing.

I don't think there is one way to get Autism. But, I do believe that for some, foreign chemicals in an underdeveloped body and brain can't do anything but harm, not good. Have you taken a look at the ingrediants? The diseases may be harmful themselves, but what we're giving to prevent the disease may surely do damage. That's what Jenny is saying, but that's her opinion. Everyone's entitled to one and I respect yours as well. That's what makes a good dialogue.



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04 Apr 2008, 8:16 pm

demoluca wrote:
Dear parents,Teachers,Friends, Family and supporters,

I want you to know that I am autistic.I need you to know that I am no disease,I am not sick, I am not ill.There is nothing "wrong" with me.
I feel just as much as any person, even if i do not display in it the "conventional" way.I never "relentlessly sucked the marrow" out of my family.
I have my problems,My quirks, little odd habits that i do, But doesn't anyone have these?

And just who gets to decide what is "normal" and "Abnormal"? and most importantly, who is or is not normal?

"normal" the way I see it, Is very different from person to person.

If a person says "heh" after every sentence,then that would be what they "normally" do.If the same person does not say "heh" after one sentence, then this would be "abnormal behaviour" for that person.

So, if your autistic kid usually flaps there hands for half an hour after watching television, then that is "normal" for them.If they stop for what ever reason,then this would be "abnormal" or "unusual" for that particular child.

But then there are social cues.

As a so-called "normal" human being, you were probably taught very early on to look people in the eye when you speak with them, or to not belch after eating..

But in some parts of japan it is considered impolite to look a person straight in the eye, and in certain areas of Europe you compliment the chef by belching after a meal.

So would it not be fair to say that all those social cues you spend time teaching ANY child, not just an autistic one, that all those social cues would be useless if you left the country or if you were talking to a person from a completly different culture?

Now, i assume you, as a decent and hardworking person would not be racist to such a person, and that you would not mock a different culture or a different belief system and its so called "odd" social rules.

Now, let us imagine that the autism spectrum in itself, is a different culture.A culture where there is an absence of little forgettable social rules, or so much emphasis on the meaning and tone of the voice in words.

wouldn't that be a nice break from the usual social drama?

But any culture has its rules, even if they are not "social" rules, they are still rules.Just these rules are more individual rules.

For example..if your child screams if he/she is touched then its common sense to NOT touch them or try to make them LIKE being touched.

So if you follow those little rules, and those "odd" interest,then soon you'll find your kid is amazing.

It doesn't matter what level of functioning they are at.They could be an LFA with the mentality of two year old,it could be an aspergers prodigy, it doesn't matter.Your kid is amazing.i don't have to even see your kid to know that he or she is amazing.They all are amazing, no matter what.

Now, i suppose that maybe your super fantastic amazing kid has some communication prblems.
don't worry so much about body language.you can learn what they do when they are happy or sad just by watching them.as for teachers, you may always right down what happens if they are happy or sad.
try and focus more on the actual words.This way it might make more sense to your kid.

So now that you have entered the realm and culture of autism, don't worry so much about what other people are saying.
Its not their kid.it's yours.

and lastly,

I truly wish you and your child the best of luck.no matter if you agree or disagree.just remember...autism is a culture.

It's not a deformity.

-----


at some point in the near future i'll post this on the oprah site.

what do you think?


CC George Stroumboulopolis on it too, please.


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