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walk-in-the-rain
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06 Jun 2006, 5:14 pm

Has anyone had difficulty finding a good online group for parents that doesn't seem to be trying to promote some sort of "cure". I think people are entitled to their own beliefs, but on the local group (ASA) I am on it is becoming one chelating discussion after another with "outrage" if anyone challenges the status quo. It is funny because these mercury groups started out in the minority a few years ago and now seem to be in the process of trying to run some of the groups that they previously begged tolerance for their viewpoint from. I was staying on the local group for information but it is not really a place for support and information - more like an infomercial. It is also kind of insulting the terms they use to describe anyone on the spectrum - which others on the spectrum have pointed out to them before they left also.



ster
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07 Jun 2006, 3:38 pm

this is pretty much the only support i get outside of my friends at work. people can get really stuck into what they think is the correct view of something, and then heaven forbid you disagree with them.



aspiesmom1
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08 Jun 2006, 1:44 pm

The first site I ever found I finally had to stop visiting a few months ago. It became a "curebie" site, with nothing but info on how to make your child as "normal" as possible, and people giving kudos for someone's kid getting invited to the "in crowd" kids bday party. When another mother picked a fight with me because I said my son stimmed (she insisted such a thing doesn't exist - hello - even NT's have their little tics and stims from time to time) I bagged it completely.

Let us know if you find a great site - even here I've had my head handed to me on a platter on other threads because I'm just an "NT mommy" and don't belong...


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ster
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08 Jun 2006, 9:05 pm

on this site i've found that if i stay mainly within the parent's section, things seem ok......i, too, have gotten my head handed to me on a platter when i've strayed from the parents section~matter of fact, i've gotten my head on a platter IN the parents section too....oh well



walk-in-the-rain
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08 Jun 2006, 9:44 pm

aspiesmom1 wrote:
The first site I ever found I finally had to stop visiting a few months ago. It became a "curebie" site, with nothing but info on how to make your child as "normal" as possible, and people giving kudos for someone's kid getting invited to the "in crowd" kids bday party. When another mother picked a fight with me because I said my son stimmed (she insisted such a thing doesn't exist - hello - even NT's have their little tics and stims from time to time) I bagged it completely.

Let us know if you find a great site - even here I've had my head handed to me on a platter on other threads because I'm just an "NT mommy" and don't belong...


Yes that is becoming the predominant theme - making their kids as normal as possible. And sometimes I wonder who it is they are doing that for because some of the stims and behaviors are what any person would do. One time they were giving each other advice about this one kid's sensory issues - he would cover his ears and scream because he couldn't stand the noise in the room. But they were making him stay in there so he would get accustomed to the noise. I didn't say anything about her method - but told her to maybe try and look for cues from her son that he is becoming overwhelmed and to take a break from the noise BEFORE he gets too agitated and then try and go back after he has had a chance to regroup. (I know this because it works for me - lol). After they said that would only be encouraging the kid's behavior and teaching him to be avoidant, one of the therapists from a local program said I was right and that actually teaches the child to self regulate. So I was amused by that.

ster wrote:
on this site i've found that if i stay mainly within the parent's section, things seem ok......i, too, have gotten my head handed to me on a platter when i've strayed from the parents section~matter of fact, i've gotten my head on a platter IN the parents section too....oh well


I think there have been some interesting discussions here - but generally there seems to be at least a wide range of opinion even if there is some outrage sometimes. :)



aspiesmom1
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09 Jun 2006, 1:11 pm

There is nothing wrong with a little healthy, well directed, outrage. It gets things done sometimes. It just helps relieve stress at others. However, some of the ridiculous stuff that has happened...well 'nuff said.

This other board I belonged to (which people still rave about, btw) is full of moms all looking for the next drug to make their kid "right". Now I know that some kids (and adults) need some pharmacological help to make it through the day. This was far beyond that, this was an attempt to medicate into mainstream.

I love my son for who he is, quirks, squeaks and all. Does he sometimes seem like more than I can handle? Absolutely. But that's why I look to places like this. To talk to adults with AS, who have been there and can better explain to me what he's going through. And to sometimes commisserate with other moms and dads, it can be a relief just to know you're not the only one with the "golden hammer" card at Home Depot. (although that is getting better).


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walk-in-the-rain
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11 Jun 2006, 12:26 pm

aspiesmom1 wrote:
This other board I belonged to (which people still rave about, btw) is full of moms all looking for the next drug to make their kid "right". Now I know that some kids (and adults) need some pharmacological help to make it through the day. This was far beyond that, this was an attempt to medicate into mainstream.

I love my son for who he is, quirks, squeaks and all. Does he sometimes seem like more than I can handle? Absolutely. But that's why I look to places like this. To talk to adults with AS, who have been there and can better explain to me what he's going through. And to sometimes commisserate with other moms and dads, it can be a relief just to know you're not the only one with the "golden hammer" card at Home Depot. (although that is getting better).


There also seems to be an effort to rewrite the history of autism too. And it really makes me wonder sometimes the blatently contradictory statements that people make - like on the one hand discrediting any statistics that don't coincide with the current CDC and then turning around and using stats from an anti-vaccine website that differ from the CDC. So far in the past month or so I've been told that autism is not genetic, did not occur before vaccines and is caused by mercury - despite the fact that some include the MMR which had NO thimerisol. So even besides the differences of opinion the trend seems to be completely redefine autism.



aspiesmom1
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11 Jun 2006, 12:34 pm

I think people are also afraid to look into their family histories as well.

My husband is on the spectrum, I'm pretty sure his brother is as well. And the dad, well the man has 10k worth of trains in his basement - I think that about covers it. (nevermind the rest of his behaviors that are so classic.)

I am adopted, but recently found some family, and wasn't surprised to find two of my cousins sons are autistic, one fairly low functioning, the other closer to AS.

I don't think our son had a chance with those odds.

While I will always try and protect my kids from anything dangerous, I think you have to get your info from the primary source. Once you start getting statistics and medical news from listservs you're looking at tainted and biased info.


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jacysmom
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11 Jul 2006, 9:58 am

I have been reading this thread and was surprised to find out that there are people who want their aspie kids to be "normal" (whatever that is). I, too, love my daughter the way she is because the Asperger's is what makes her unique and different from other kids. It does have its drawbacks but for the most part I've learned a different and interesting way to view the world and it makes my life a little less boring.

I admire parents who take the time to really try to understand and love their children under "difficult" circumstances. There have been times I didn't know how to react to what my daughter was doing or saying and times I have done things wrong, but we work through it all together.

I love my aspie. She can be very intuitive about the world's quirks. I just wish "normal kids and adults" saw her the way I do.

I've been trying to find a local offline support group to be a part of but so far have come up empty. Up until now, I had only found one--now I'm finding quite a bit.