8/09/2009

The futility of Anger Misdirected and still missing the point

AoA has ran its weekly parental rant. So, here is my weekly countering.


None of my children were typical babies or toddlers. They met the gross motor skills developmentally on time, and the girls did better with talking than their brother did, far better, but no, they weren't like "normal" babies. On many levels, the girls' development was so much smoother compared to their brother. But, even they didn't imitate and it wasn't until this last year, at ages 7 and 5 that doing patty cake finally seemed like something to do. I don't think I've ever been pissed I was denied the "normal" way of things, though. I was too busy loving them, delighting in them, and working my ass off to make them comfortable and happy, while working on the skills they weren't developing on their own.

My girls are smart, charming, funny, different, and as long as things are going as planned, and all is right, they are fine. It takes a lot of effort on my part and theirs to keep things at an even keel. My son has added difficulties, can go on about yugioh and gangland until you want to weep from an obsession that has lasted years and shows no sign of abating. He plays beautiful piano compositions with a phantom of the opera flair. He smiles from the depth of his soul. But he often is lost in his beautiful mind and need frequent direction to keep him on track. And my gosh, he can bitch up a storm that lasts as long as the yugioh discussions. I love them all completely and totally. And I have devoted so much of my life and my energy into working with them to give them the best chances. I homeschooled my son for a decade and before that was in the school system with him daily. We did the meds the docs recommended until he had a stroke at nine; we did the standard OT, PT, and speech for him and my youngest gets these services now. No ABA because ABA has never been offered. So, I work on discrete skill sets they need to master, and I incentivize and sometimes use the taking away of a favorite toy or watching a movie or a special dessert to get the child to do the particular task.

It's called parenting. No matter what it is I do with my children, whatever amount of effort, whatever particular skill I am using, it is parenting. To call it other things and bemoan my state, my lack of what others might have with their children, is pointless. It serves absolutely no point whatsoever. And it wastes my time, my effort, and my energy, and it demeans my children. Seriously, think about it, if someone talked about their relationship with you in those same terms, how that would make you feel? Why is it that no one over at AoA is considering things from the child's point of view?

Michele has an excellent blog up right now, http://www.adayinthelifemij.com/2009/08/im-not-autism-mom-im-not-autism-parent.html, as does Bard Child, http://prismsong.livejournal.com/2549.html (which I talked about last night). They ought to be required reading.

I don't get being angry at a fictionalized concept that other parents of children with autism would want you to ignore legitimate medical concerns (and I'm not defining what's legitimate here; that's between you, your doctor, and your child) and not treat them. Of course treating underlying medical conditions will make your child feel better and be happier. To suggest that anyone would want your child to be constipated and in pain is to be raging at something that exists in your mind alone.

You write: "AND YOU WANT TO TAKE THAT AWAY FROM ME?!?!?!? WHO IN THE HELL DO YOU THINK YOU ARE??!!" (author's caps) http://www.ageofautism.com/2009/08/dont-try-to-tell-me-how-to-love-my-children.html#more.

And I think as I read yet another pissed off parent raging at the world, who the hell are you yelling at? Who said they wanted you to feed your child a fast food, fatty processed diet? Why are you so angry? Nancy Snyderman reports on studies that show no particular benefit of a GFCF diet to children with autism; that covers children with autism without accompanying gluten and casein intolerances or celiac disease or lactose intolerance. As far as I know, no study has measured the effect of this diet in children with those accompanying difficulties. If your children have those problems, of course you treat that. Of course you do, and I highly doubt Dr. Snyderman would suggest differently.

I don't get it. I don't get running week after week of pissed off parents who rage at things that don't actually exist. And if they do; if there are folks out there on the various forums you frequent who engage in the kind of hostile behaviors that some in the mercury brigade do (ahem), then why not say, on this site, so and so said this and that's what I'm raging at.

It's a false dichotomy. Age of Autism has decided to ramp up the rhetoric, now essentially defining themselves as the "if you don't agree with me lockstep on autism causes and treatments, then you're saying I don't love my kids." I'm going to name our "side" the "what the fuck is your problem?" side. It seems fair. And way more accurate on our side.

I get that there are more than two divisions, that we all have varying positions on autism, treatments, how to deal with it all. I get it, my friends and members of the facebook group and Raising Autism get it. We agree that we don't have to agree on everything. We respect those differences and the right of parents and adults on the spectrum to make their own decisions. We're trying to provide the most accurate scientific evidence out there on treatments, so informed, rational decisions are made. We're trying to get the input of adults on the spectrum who've been through the various treatments and find out what helped them and more importantly what hurt them.

We're working for acceptance for those with disabilities and those who are different. We're working to befriend those who are friendless, to be a soft shoulder, a welcoming smile. We're working to make things better for everyone.

What are you doing, as you rage against the world because you were handed a life you didn't anticipate? How exactly is Age of Autism working to make the world a better place for people on the spectrum? I know, the products from your sponsors will help to "recover" your children; they'll be on the over the counter woo for as long as your readers can afford to pay for it or until they wise up and realize they might as well have flushed it down the toilet. That's your effort, isn't it, really? Scare the shit out of folks, demonize "big pharma" while letting big "nutra" fund your propaganda, make the folks think it was the thimerosal, the MMR, the DTaP, lyme disease, SV-40 (you let it post, you're endorsing it, because you are controlling what you let on), sticky blood, yeast, and a whole host of other causes. And yet, your loyalists pay no attention to the inconsistencies or how you leave behind charlatans that even you wise up to as being bad for your bottom line.


Love your children, work hard for your children, and do something better with what looks like an incredibly selfish, self-absorbed and misguided anger from what I can see.

16 comments:

NightStorm The Aspiewolf said...

I think most of the moms on AoA are in serious need to a nap. =.=

Cranky mommies are cranky

KWombles said...

:-) Thanks for the chuckle; I am sure that would be a help to them and their children! They are not doubt sleep deprived, stressed and at times overwhelmed. I wrote sometime back that I suspected this had a lot to do with pain. Every post I read over there that's like this one confirms it more; it's psychological pain, both for the loss of of what they'd expected and for the difficult circumstances they find themselves in. They lash out. They are the walking wounded and if it weren't autism, it would be something else.

NightStorm The Aspiewolf said...

I feel bad for many of them, they sound like they are in desperate need for some "alone time" they obess over their children that they often need to step back and seriously get some therapy.

It's not healthy

Mom26children said...

Kim,
The stories are all the same...only the names have been changed.
I want to know how her child skipped 2?
Did they not celebrate the 2nd birthday? Were they so busy being depressed about having an autistic child, that they overlooked the fact the child had grown another year?
I am very puzzled by this statement...

kathleen said...

Good lord Kim..she is angry because her kids weren't "typical" at two??? What are they grasping at straws at what to be angry at? Typical american diet? Who is this woman and what is she so angry about? Her kids have something besides autism-a medical condition..so she treats it..o.k....? And this has to do with being upset that her kids were not typically developing? I agree with Night storm...she really needs a nap.I surely don't understand what point she was trying to make...

Mom26children said...

Kathleen,
She is stereotyping her child. Her child was supposed to be a certain way by the age of 2 years old. Shame on that child for not letting this woman experience motherhood as it should be...DAMN !!!

KWombles said...

Hey, think about how angry she will remain as her children don't toe the line of what she thinks development should be.

I do feel for her, the pain of wanting something you aren't going to have, but most of us, well, honestly, shit or get off the pot. We move on. We focus on what we can do. We appreciate what we do have. We make the best of it. And we stay focused on real issues, not some imaginary ones to put our mad on.

Those of us who keep our mad on at the big bad world and what it's done to us, how dare it?, are as Emily wrote on her blog http://daisymayfattypants.blogspot.com/ in need of anger management.

I'll take my kids however I can get them and work to be the best parent I can be to them to help them function to the maximum of their potentiality.

If that makes folks mad because it doesn't include their brand of woo, well, gosh, waaah. :-)

Mom26children said...

OMG...waaah is right !!!
Poor little mommy's did not get the children
they were supposed to get.
What would they do if they had gotten
a child with much worse disabilities?
When I read today that Jenny McCarthy ran
outside and begged God to take her child, because
he was in so much pain from Autism and seizures,
I wanted to scream....
Poor pampered Hollywood Princess !!!!

Mom26children said...

Found this on Autism Speaks forum tonight...
I must say I missed it because I have not been on the site for a while...

Reply by nobody on April 7, 2009 at 6:42am


Will pimp kids out for MONEY!!!!!

Go droopy!!!!

Nobody was speaking about me...
Now this really pisses me off...

Are they kidding?

kathleen said...

You know, there have been days when I have wanted to run away from home..I think that ANY parent of ANY child feels that way from time to time..But I couldn't ever picture myself running outside and screaming at god because of the "pain of autism" WTF? Was Jenny somehow channeling Scarlet O'Hara? Did she have a film crew on hand? That is beyond ridiculous. How anyone could take her seriously is beyond comprehension.

davidbrown said...

One of the many things I have studied (and written one novel about) is folk beliefs about the undead. A major "function" of the undead was as a scapegoat for plagues. I introduced a little book of mine (self-published on amazon) comparing the Medieval plague scapegoats to the blaming of autism (among many other things) on vaccines.
One interesting comment I have run across is from a Slavic scholar ("revenant" beliefs lasted longest in the Balkans) comparing the "scapegoat" of the undead to those of witches and Jews. He took the view that the undead were the best scapegoats, because it never harmed anyone who wasn't already dead.

Sirenity said...

Nicely done Kim. I would add that by complaining and being angry this mother of twins gets to join a clique of parents that provide her a place to be praised for her anger, praised for her article etc.
I have observed that many people get addicted to the limelight, addicted to the negativity and addicted to being angry in general.
Perhaps when you consider both the addiction and teh feeling of belonging to the crowd it is easier to understand.
I sometimes wonder if some of the posters over there just write crap to see what they stir up as well.

Just my opinion though, lol.

We do live in an era where many adults are happy to hand over their money and with it their sense of self responsibility. (physcis readings rather than decision making, alternative healing rather than facing the disease-all the same thing really. Relying on magic woowoo to fix something so that one does not have to deal with the boring day to day decisions that come with being an adult.

Hugs and laughter

davidbrown said...

Addicted to limelight... that would be consistent with clinical narcissism.

Hammie said...

"List of (bad) Names I have been called online"
please note: my favourite which came via Harold's Blog "Shiny ND"
It was meant to be an insult but I rather liked it.

xx

Chromesthesia said...

I don't get it... if these folks did have typical two year olds they'd complain about that too... I never like reading these sort of articles because I always feel bad for the kid as I see a lot of myself in these kids that want to read in the corner.

I also have stomach troubles, but that is from stress mostly... I don't see why she's so angry, no one is saying feed the kids mac and cheese in the blue box or McDonalds... (i forgot where I was going with this because my mp3 player seems to be hungry)
Oh, yeah
These folks are too angry. That's why I like reading folks like you and also Mom26kids and Kristina Chew because you guys make me rather warm and fuzzy and you goes aren't moaning to the heavens in sorrow all the time but really trying to understand and except your kids.
Which is rather nice. When I have kids, I want to accept them for who they are and not have false expectations that have to be shattered.

For example, that prom thing. I got FORCED AGAINST MY WILL to go to the prom. I don't see anything wrong with a kid wanting to stay home and listen to Mozart instead.

KWombles said...

Chromesthesia,

Thank you for the kind words regarding this blog. I'm trying (and my woo fighting friends with their blogs) to counter AoA in more than one way: counter the misinformation and counter the anger/bitterness/maladaptive coping skills they are advocating.

I have stomach troubles caused by stress, as well. I'd be far more likely to see my children's stomach issues as similar in cause (they fortunately do not have stomach problems) and work to minimize their stresses. I already do that, though, by preparing them in advance for new situations, by giving them adequate countdowns, by giving them plenty of prep time, and by giving them some input on things they do that aren't strictly necessary.

I'd rather listen to Mozart, too, than go to the prom; as a child I preferred the quiet of the library to the bustle of the playground. Still do. Each child is different in his or her preferences. Where those preferences aren't self-injurious, those choices ought to be respected. :-)