7/18/2009

When Life hands you lemons, have a meltdown and tell parents of children with cancer they are lucky

http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html

In "Autism Perception: "A Bump in the Road?", Julie Obradovic completely lets it hang out. I'll be the first to agree that people don't see many of the difficulties parents with children of autism have because a great deal of it occurs behind closed doors. And we don't tend to talk about it in great detail as it happens to friends who can't relate, and we do that for many reasons. But this post by Obradovic offers such raw, visceral, oozing pain, rage, and disappointment that it belies her contention that she is happier than she's been in years. If this is representative of her daily mental state, she needs to find someone qualified to help her through this, because this is ugly business.

I've got a busy weekend ahead of me, and plenty of points I'd like to make on this piece and the general love-fest and high-fiving that went on over at AoA on this bit but it will probably be Monday before I can do what I want on this piece, so I'm opening it up for the readers to comment, to pick pieces of Obradovic's post or the commenters to dissect, as I am sure that it didn't run 100% positive over there on the comments section.

Help me out on this one, as rereading her piece over and over in order to do it a fair shake makes my heart hurt.

I'll start with one note: really? Cancer kids? Jealous of them because they have insurance (sweetheart, 40 million plus Americans have none)? So much wrong here.


So much wrong here. It proves Connie's point. In spades.


Update

Julie responded to Angela's post at AoA with a long post I won't rehash here, except to point out this paragraph:

"This is the kind of stuff I can't stand, frankly. I don't care if YOU think Autism isn't worse than cancer or getting hit by a Mac truck. For ME, it was. And I'm allowed to feel that way, and it doesn't make me a bad mom, or an ungrateful mom, or anything else. It makes me human."


But, Julie, it doesn't say much good about your character. So, if it's not representative of it, fix it. Because it may be human, but it isn't proportional, it is incredibly insensitive to those who have lost their child to cancer, and it doesn't help convince a reader that these are feelings you keep buried, especially on the heels of this paragraph from the day before:

"She is dead. That Eve is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now. I want that Eve back!"

You are making the choices, each and every day, about how you will feel about this, about how you will deal with your life, your family, your challenges. And you are teaching your daughter and others with autism how they should feel about themselves. You write, "I think about all of the people who have been able to benefit from my knowledge and our experience." And then follow on the heels of that with your rage and jealousy over people who will benefit from your knowledge? And folks on AoA applaud you. I'm guessing you don't keep this vitriol nearly as well bottled as you think you do.

I don't particularly care if you consider me one of "the stupid people in this world who have nothing better to do than bother parents trying to help their children and wonder what the hell their problem is and for crying out loud just go the hell away and mind your own business." You put it out there on the internet to be read. You deal with fallout of your words.

What on God's green earth have you been giving your child three nights a week for the last 86 weekends that you have to do for another 14? And don't cry to leave you the hell alone about it when you put it out there.


@Twyla,
And my son who had a stroke, potentially as a result of the combination of medications he was on and an underlying blood clotting disorder, isn't going to be the person he would have otherwise been. So, in addition to having autism, he has additional cognitive impairment from the stroke. But I'm not calling him dead.
Nor am I saying it's worse than cancer. Maybe Julie's all happiness and light and this post misrepresents her, but based on her response to Angela, it's clear she doesn't feel it does. And, yes, it may be human, but it doesn't make it particularly sensitive to folks who've dealt with cancer or lost a child.
No high horses are necessary here, @Thanks Julia. You appear to be doing just fine on your own.

Update 2.0 12:28 am July 19


When you want a truly nasty post, you can always count on Teresa Conrick to take it up to a 10. If Teresa doesn't like what you have to say, you can count on her to research up on you and then attempt to demolish you, safe in the comforting knowledge that AoA won't let your rebuttals on.

Here she attacks Angela (Sirenity) who wrote a nice letter offering comfort, well, that no one there seemed to see it as such, since Angela pointed out that cancer was worse than autism and Julie was rather, ahem, negative. Any deviation from the standard vaccines caused autism routine and you are immediately the enemy.

"What a bunch of bullshit you posted. Here is your real motivation, not for Julie, Eve, or my daughter. Go off and spout your fake "caring" elsewhere"

And then implies it's somehow because Angela has several arenas to post at while making available evidence that vaccines are not responsible for autism.

You know, AoA, you're really shining as a bastion of reason, rationality, and calm tranquility. Oh wait, my bad, you're not. You're excelling at vitriol, though. At victimizing and marginalizing your children. At making martyrs of yourselves. At making it abundantly clear that your agenda is NOT to help parents cope adaptively, to appreciate their children for who they are where they are, to promote the view of autism as a horrible disease process in which the children are seriously sick from heavy metal toxicity and if you only do god knows what three times a week for 100 weekends. What the hell?

Autism is NOT heavy metal toxicity. Heavy metal toxicity is heavy metal toxicity.

Okay, AoA explain why my reasonable posts don't get on, but Teresa's hatemongering does.

22 comments:

Gonzo said...

Freaks me out!

Reading these stories is like seeing my own childhood through fear-and-loathing glasses.

It's such a painful distortion, the way she confuses her own pain with that of the child, and confusing autism with discrimination and injustice, (the way David K. March described so well here).

kathleen said...

I had a most difficult time reading this piece. Especially the comments afterwards..I would never-not in a million years, try to negate the difficulties in raising a child on the spectrum.Having three of my four children on the spectrum at varying degrees of development-I've been there done that. That being said..The vitriol-the pure hatred-the "oh how can this happen to ME!" Martydom, was astonishing, astounding, and devestating.I can not imagine how their children perceive themselves..I can now understand how the whole "vaccine injury" debate has been flamed..These are people who simply can not accept the fact that autism happens..no, they must blame something...anything..to the point of unreason-because this just doesn't happen to "People like them" When I read the comments about holding your child down in order to have chelation therapy-as this is somehow "proving the commitment that they have to their child" I can't help to think about how wrong they are..that is not about their children-it is about themselves-about "curing" that autism because they simply can not accept the fact that their children are autisitic..because those things don't happen to good people...I look at all the quackery and woo that they follow-unproven "therapies" that are dangerous..and I look at how they complain about the money involved..and I think-this has nothing to do with their children-rather, it is all about their needs-their wants-their desires-their dreams. Well guess what-having a child changes all of that-autism or not..I am sick over this one.

Mom26children said...

I must agree with Kathleen...this was a difficult piece to read. And not only did this "mother" express displeasure in having a child who is Autistic, she went on-and-on.
Now, after reading all of the comments, I am amazed there are so many other parents out there who feel the way the author of this piece feels.
I also must agree that there is no way in heck these children do not feel the wrath of their parent's anger.
And they blame the autism for there not being people around..I would assume, people are tired of hearing them complain and whine.
And God forbid you don't believe in their methods of treatment...you are condemned and villified...shameful.
Thankfully, they have shut the doors to one local "quacky" clinic...hopefully, the one not too far down the street from it will soon follow.

Connie said...

The way one responds to adversity is a measure of one's character. Do we choose to be strong and resiliant, or do we allow ourselves to be eaten up with pain, anger, and self-pity?

Self-pity is discouraged in most cultures -- and by most parents. People who are unable -- or unwilling -- to rise above a bad hand they've been dealt may sometimes generate sympathy in others. Often, they generate contempt. But rarely do they garner admiration.

Except at Age of Autism.

Because at AoA, self-pity is not seen as a weakness or character flaw to be overcome, but as a strength to be celebrated.

And perhaps even worse than Julie Obradovic's repulsive self-pity is her unrelenting, seething fury.

Fury that is enabled by virtually every one of the commenters.

Craig, if you read this, this is what I mean when I say that AoA "teaches" or "encourages" its readers to hate.

The commenters to Julie's piece are encouraging her to feel the way she feels. Absolutely they are. How can you not see that?

This goes way beyond simply "being mad because Orac was mean to me" or "being angry because no one believes us."

Craig -- or any other AoA reader who cares to weigh in here -- PLEASE tell me what incentive Julie has for moving beyond her rage when she recieves such validation for it from the AoA readership?

What is her motivation for giving up her anger (as she claims she wants to do) when putting it on display gets her lots of attention and affection? Hell, the readers are making her into a goddam hero over her piece.

And I ask again: How does her rage and self-pity help her children?

(to be continued)

Connie said...

Imagine yourself as a child. Try really hard. You're a little kid, and you look to your mom and dad for stability. You look to them for life lessons. They are the ones who are going to teach you how to navigate in the world, and how to react to the inevitable pains you will encounter.

Now imagine having a parent as perpetually angry as Julie Obradovic. As full of contempt for the world and all who disagree with her as Julie Obradovic. As suspicious and distrustful of the world as Julie is, with her monumental level of self-pity.

What would that feel like, growing up in a house full of such rage?

Well, I think I can tell you. My sister -- who has a son on the spectrum -- could have written Julie's article. So I can give you some clues about how it feels to the kids.

You would have kids who are afraid of their own mother (as my oldest niece has confided in me).

You would have kids like my youngest niece, who I have seen BEG her mom -- in tears -- to stop saying bad things about her brother and try to say more good things. To stop talking all the time about how difficult it is to live with him.

You would have a boy like my nephew, who continually gets the message from his mother that he is a burden he no longer wishes to deal with. You would have a boy who constantly asks me, and his dad, and his mom "do you love me?" because evidently he's not sure about that.

You would have a boy who says -- many times daily -- "I'm no good" and "I don't know how to be good" and (a recent development) "I want to die."

Read some of my other posts here to see what a world view like Julie's does to your marriage. (Short version: It pretty much destroys it.)

Please, Julie . . . and other AoA readers . . . find some way to let go of your rage. Don't come on here and justify it, or tell me that you're RIGHT to feel this way forever, or whatever other excuse you use.

Please sis . . . find some way to let go of your rage, too. Julie Obradovic is everything I want you NOT to be. Please stop hurting your kids.

AoA editors and mods . . . please stop enabling parents to hold onto their anger. Please. You're hurting an awful lot of families out here. You really are. For the children's sake, please help your readers find ways to move beyond their rage, rather than stoking it up.

Please do the right thing. This has nothing to do with your stance on vaccines. It has everything to do with antagonism and resentment.

Louise said...

Well hells bells ! If that aint one of the most god awful stories I have ever read. In all my days-and I have had a bunch of them..I have never heard a mama talk about her child in such a fashion. Some people need to be whupped upside their heads. Thats for sure.

Squillo said...

I agree with Ms. Obradovic on one point: She is allowed to feel however she feels, and should be allowed to feel it without a lot of judgment. (Although if one writes about it publicly, it becomes fair game for commentary.)

I absolutely agree with posters here that what she seems to be doing with those feelings is harmful, to herself, her family and the wider community of families with autism.

I've said it before, and I'll say it again: I don't fault parents for wanting or looking for a "cure," but after a point, the "war" gets waged against one's own child--a living, breathing, feeling person--rather than against an amorphous entity called "autism."

Thelma said...

Thelma followed her bud Louise over here to put her two cents in since apparently Age don't appreciate 'em none. Cain't imagine why not, for sure!

Squillo, sure and Miss Julie's allowed to feel however she wants. Doesn't mean she should be near her sweet little child feelin' that way, though. So, I reckon if Miss Julie's a feelin' this way on a regular basis, she better be gettin' some of that talk therapy. 'Cuz, the pain she's feelin' ain't necessary or healthy and it needs some fixin'. Anything else, well, that'd be plain foolish.

Sirenity said...

http://lovethosekids.blog.ca Is where I posted my copies of my responses.

Hugs and laughter

Mom26children said...

Age of Autism is supposed to be for parent's of autistic children...which I am. God forbid you post any comment to disagree with what was posted.
Why on Earth would you have a comment board, if you are not allowing both sides of an issue to be addressed?
I know, on my blog, I have been yelled at, called names, and have had my children berated...but, I let the comments come through...Why? Because most of the time it shows the true colors of a person (whether they are anonymous or not).

KWombles said...

I have to note that AoA apparently thought my comment too, what, inflammatory? to allow on.

And now they're over there badmouthing Thelma (I assume the same one who posted above), yet Thelma has no post on the site? And making fun of how she talks. Well, Thelma, you are welcome here anytime you can't counter AoA on their site, although it appears you do just fine over at your blog.

Louise, welcome. I hope both you ladies will join the Countering Facebook Group.

Mom26children said...

KWombles,
I have to keep going back to read the post...I am still amazed that this behavior is deemed okay by people who are "raising" children with Autism...I am truly sickened.
Okay, maybe I should not dwell on this, but I am so concerned about how their children feel knowing that they are not what their parents wanted...KS included...shame on her for thinking this is okay.

KWombles said...

Jeanette,


I don't think it's their best foot forward, but it's been a big comment draw for them and generated buzz outside their little world, so I would expect to see more like this. AoA is a business now and about bringing in the ad revenue and sponsors. If it was ever about the people and helping them, I do believe that ship has sailed right on out the harbor.

Mom26children said...

Yep,
A new "woe is me" post is on there today....
man..they are running with this pity party.

Connie said...

At what point, one must ask, does the raging stop being a therapeutic "blowing off of steam," and start becoming simply a habit of mind?

Many, many of these people will be enraged for their entire lives. Despite their protestations to the contrary, I see very little evidence that they WANT to "move on."

Sirenity said...

My opinion on AoA...I think that the entire site is an advertisement. As such they can not allow all the contrary comments on. I believe that my comment got on because i am not a known name and they felt it would be easy to use my post to further their depiction of parents of autistics being martyrs and self sacrificing and castigated.

Hugs and laughter to you all, goodness knows we need them after the day of vile fury directed at us. (at least i do!)
:)

Mom26children said...

Teresa Conrick and the rest of the "mob" are so easy to read:
1. if you do not agree, they accuse you of being a "big pharma employee", a anti-vaccine blogger, not the parent of an autistic person (God forbid we differ than they do in opinion).
2. find it acceptable to call you names and tell you they love their children more than you do.
3. contact your place of employment (which happened recently to a poster there) and complain
and
4. contact you at home...so they can anonymously spew their words to your ear...

I am sure their hatred spills over to their real lives. No wonder they have 80% divorce rate and lack of social friends. They stew amongst each other.

Mom26children said...

Also, just as scary...
Teresa Conrick is a Special Education teacher...
shame on her.

Netdude said...

@Connie - the problem then comes when the rage is collectively directed at other targets. if you're not either a parent of an autistic child or agree with their opinions, you will not be heard (or censored).

KWombles said...

Netdude,

And their vitriol is even worse for the parents of children with autism who disagree with them.

As long as they promote woo and false information, as long as they're a walking advertisement for said woo, and as long as they foster a victimhood mentality that leads to harm to their believers (and I think it does), then I'll be here countering.

And I'm glad to have such excellent company to do it in. :-)

Nostrum said...

This is so messed up. Seriously. Parenting is hard work. Parenting kids with autism is sometimes harder work. It's ok to get frustrated with either situation, but when you're saying kids with cancer are LUCKY? Whoah! Get help.

Timelord said...

Hi Kim. I came here basically to say that Eve is not dead. That was a despicable remark showing a complete lack of understanding of Autism. I agree with Nostrum - she needs help and desperately.