I have been reading Autism forums since we bought our first
computer in 1997. Caitlin was 6 years old.
So, for 12 years, I have sought out information, from other parents
of children with Autism. I was seeking people who had the same experiences
we had, more experience than we had and different experiences we had
in raising our children with Autism.
After a few years of being involved in the "witty" banter (and let's face it...if
you do not agree with the biomedical community, there is nothing witty about it)..
I decided a year ago, to take a break.
The last 2 weeks, I have decided to revisit the two forums that I frequented...
AutismSpeaks and AutismWeb....
To my surprise....well, not really....I see the same old ranters ranting the same old
rantings...
The same unhappy and unpleasant people who want those around them to be as
miserable as they are. The same name-calling and hatefulness that sent me away
from these forums still exists.
Returning to the forums is very much like returning to watch a soap opera you used
to watch in college and being able to catch up in minutes.
Mrs. Davis is spewing the same lies about the same people and unable to back up her
inaccuracies....
while her cronies keep egging her on...
I truly believe they set her up to look so ignorant (but, that is just my opinion).
Yet, at the same time..not one of these people are helping any parent or child with
autism!!!!
These people with autistic children swore 4 to 5 years ago that they are going to
cure their children by chelating them, changing their diets, supplementing them
with untested drugs, enclosing them in Hbot machines, injecting them with B12 and
lupron shots, slapping nicotine patches on their very small bodies, etc....
Here we are 4 to 5 years later and they still have children with Autism...only older.
Instead of mellowing and finding peace with their children..they are still very angry
and in turn...take the anger out on other parents.
They have continued to try any new cure that comes along...including the OSR crap
being sold by the heads of biomedical.
They have continued to take digs at other parents who go onto these forums to help
parent's of newly diagnosed children...just like they have.
They take every piece of propaganda they can get their hands on and twist and turn
the information to fit their purposes.
So, for this very reason...I will remain off of the forums that are so negatively portraying
autism.
BUT....
I will not stop at trying to help those who are open to a clearer, more logical approach.
I have found many parent's, such as myself and my family, who are willing to
stop this insanity of Jenny McCarthy and Age of Autism....we will be heard and we
welcome to hear from you....
We will not call you names...we will not talk about you behind your backs on "private
forums". We will not demean you for not thinking the way you do. We will not stalk or
torment you like others feel the need to.
We also will not sell you false hopes....just truthful and honest advice that we has been
working for our children with Autism for the past decade and more....
I wish those on the forums luck...I wish them peace....
Mostly...I wish their children happiness in the worlds that are so full
of hate and bitterness....
About Me
- Mom26children
- I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.
Saturday, June 27, 2009
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11 comments:
Very nicely said.
You forgot to tell them they can join us here:
http://www.facebook.com/group.php?gid=91368243169
Join us if you are ready to band together and stand against:
the anger,
the bitterness,
the woo that charlatans try to sell desperate parents,
the idea that vaccines, heavy metal toxicity, lyme disease, herpes, SV-40 and whatever the next nonsense is are the cause of autism.
Join us if you are ready to:
follow the science, wherever the science leads,
accept that autism is a life long developmental disorder and that while not all children will achieve independence, many will make drastic improvements as they age,
support other parents kindly and compassionately,
be tolerant of where others are on their journey of acceptance,
be critical evaluators of both the science and the claims made by those pursuing pseudoscience,
love your children unconditionally while working to improve their social skills, functional life skills, and academic skills.
This new group, born out of a desire by several parents to raise our voices to counter the negative, inaccurate, unrealistic view of autism that Jenny, Generation Rescue, and Age of Autism, Countering AoA: Following the Science, is a group ready to make a difference.
If you are looking for honest, often blunt, answers and have a truly open mind, then all the above conditions really aren't necessary. You, too, are welcome, if you are truly interested in stepping away from the anger, the bitterness, and the woo.
No comment moderation, no censoring, and no hiding. But also no harassing. Be nice. Breathe and imagine that someone else was saying that to you.
Thanks, Jeanette, for being a part of this new group! :-)
To friendship, to support, to solidarity. Our children have value and it our job to make the world a better place for them.
But always remember that there are hundreds of NEW parents visiting these boards and many are looking for help. I would hope that people like me, while not stuck into the same rut of blame and cure, still have legitimate issues to discuss regarding medical treatments and a helping hand to lend to these people who desparately need a fair and balanced view of their situation, without the proselytizing of causation theorists NOR the biases of those who would rather not look at alternatives that may be legitimate issues for the autism spectrum...
Hi Bill,
How are the girls? I hope well. We have been so busy this last year. Can you believe my oldest will be a senior this year?
Time flies...
I never forget about the new parents. They are why I write and why I speak. I get approached daily by parents who are looking for answers.
I just think it is a bit ridiculous that people are harping on the same things they harped on years ago and then cry fowl when they are hit in the face with reality....
Jeanette
I often wonder why some of these parents continue to go to the same conferences year after year (Autism One, DAN!) and never question why their kids are not "recovered." I mean, if they believe in recovery so much how come so many of them stated after this year's Autism One Conference that they were already planning next year's conference and would see everyone then. Wouldn't they begin to think that perhaps the information given at these conferences is not yielding the results they are looking for?
I thinks so many of them are desperate and use the never ending quest for the "magic cure" as a distraction.
I have to say that when we were going through diagnosis with my oldest (now 10)..I am so glad that I didn't have a computer...I think that the sheer amount of information is overwhelming-how do you sort through it? I have seen parents walk down the "cure" road-only because that is what they saw in the popular media..they didn't know any different. I worry about that.
The girls are well. Livie has made great strides in her receptive language abilities and has begun using more and more signs. Gracie has exploded in her ability to have spontaneous conversation, her academics are nothing short of astounding, and we are hoping to begin the transition into mainstream kindergarden next year (IEP/school budget/strength of our argument and lawyer willing).
As you know, I still haunt some of the boards looking to provide that piece of information that might turn a family's life around. I'll also use them as a sounding board for my ideas and frustrations about what's going on in my girls lives. I'll also admit to getting in the middle of a row, to point out the practical benefits of some biomedical programs and point out some of the REAL medical injustices happenning in mainstream medicine to autistic patients.
The shame of Jenny McCarthy is that her son was so clearly not even autistic or very mild and simply improved. She has taken advantage of that in order to profit off of parents who will listen to anything. She is nothing but a con artist in my opinion.
Reply by Diane64 12 minutes ago
Oh sure.
That's why, when you first joined this forum you would log off one username and log in under the other. There was previously a feature here where we could click on the the members page and it would say "Online" if they were logged in at the time, regardless of whether your page is "private" or not, all members could get that info.
I even mentioned it to you and that's really what gave you away, Tink. When you joined, you didn't know about the "Online" feature. It was very humorous to watch mintjulep post something, then log off and then Tinkerbell would show up make a comment and then log off.
I even mentioned it to a few other members at the time. I wonder what happened to that "Online" feature though, it now mysteriously is gone. Once I mentioned to you that I could tell you had logged off. I was wondering if anyone else had noticed that the feature is gone now. ?
WAY TOO MUCH TIME SPENT ON THE COMPUTER FOR THIS DIANE PERSON....
Some things never change, lol!
Ahhhh Mrs. Davis. Yikes. Hate to say it, but I still feel sorry for Mr. Davis and the twins...can you imagine living with that much hate?
I am trying my best to stay away from forums. All it does is waste my time and get me hot under the collar.
KWombles, I'm off to join your fb group. :)
Wait a minute. Nicotine patches?
But, nicotine is a poison...
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