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December 9, 2011

Go to Countering.

Spent

September 20, 2011

The Measure…

September 17, 2011

In breaths.
In moments.
In the spaces where all movement ceases.
Where we exist in the throb that echoes loosely between heartbeats.
In the lull.
In the ebb.
In the rush of time.
We exist and our measure is taken.
Moment by moment.
Act by act.
And we are weighed.
Will you be lighter than a feather?
Or is it only a kindness to pretend that it could be so?
That the sum total of our breaths, our moments, will balance out.
And we will be judged worthy.
Faith.

Everything’s Coming Up Roses

September 16, 2011

Honoring Those We’ve Lost

September 14, 2011

On August 26, my college met in a ceremony to unveil three stones for three important faculty and staff members we’ve lost in recent years. Two of them were incredibly important women in my family’s life: Donna and Jackie. Bennie was known by much of the student body, and he always had a smile for me. All three are missed by the college.

It’s been a little while since we lost Donna, but we just lost Jackie in July, and it still seems an oddly diminished world to realize these women are no longer in it. The college also opened the new health science wing that afternoon and unveiled the Donna Burleson Lab. It was an emotionally rich day, connecting with the past, looking to the future and knowing that these two women would have been proud.
 The provost speaking.
 My dad speaking about Donna.
 Duane speaking about Bennie.
 Waiting to unveil.
 Donna’s stone.
 Bennie’s stone.

To those who meant so much  to us,
you will be missed,
but you will never be forgotten.

If Dan Olmsted is Representative…

September 13, 2011

Dan Olmsted is pissed at Autism Speaks and wants them to shut up and go away, all because of Dr. Dawson’s coverage of the IOM report this past week.

Olmsted writes, proving there is no evidence he will consider that will allow him to reconsider his position: “vaccines do cause autism. Yes, the MMR causes autism. Yes, vaccine mercury causes autism. Yes, multiple vaccines too soon and too close together cause autism. They are the main driver of the autism epidemic.” And your evidence, sir, that counters yet another IOM report showing they do not? Anecdotes are not evidence.

His second reason is because of the canary study and “Andy Wakefield’s brave work, which of course Autism Speaks is too cowardly to get anywhere near, and all the subsequent research that confirms it.”

The third reason is even better: Olsted says Autism Speaks is “The Man’s favorite autism org.”

Given that Katie Wright is an Age of Autism contributor, on the NAA’s board, and Autism Speaks is a $10,000 bronze sponsor of their national conference this year (which Olmsted, Blaxill and Stagliano presented at last year but are not on the presenters’ list this year), and the daughter of the founders of Autism Speaks, Olmsted’s pissiness is interesting.  Another interestng tidbit: from what I can glean from the wayback machine, Wakefield’s spoken at the NAC since at least 2005, every single year, so Autism Speaks went into that sponsorship knowing he’d be there. If the NAC audience is as hostile as Olmsted, that sponsorship may not help bring more members of the community to AS.

It’s sour grapes, is what it is, on Olmsted’s point, and shows that for almost all of the Age of Autism writers (and perhaps supporters), it boils down to vaccines. Always to vaccines.

Olmsted writes about Autism Speaks, “If there was any value in its “awareness” campaign, it has been achieved; AS has no apparent further reason for being.” This ignores the reality that AS is the second largest private-sector provider of research dollars, that for every $1 spent on research, $10 is leveraged, that the AS website has thousands of pages providing information, that it provides printed copies of 100-Day toolkits and transition toolkits for free to families and has several other toolkits for parents, that they have 17 centers in their Autism Treatment Network, that they provide emergency family grants, resourses for autistic individuals in the workplaces, and  so much more.

Whether you like the organization or not, whether you think they’ve got a long way to go in making sure that adults on the spectrum are represented throughout their organization (and not just in volunteership), or you have some other criticism, the reality is that there is no organization with as broad a reach and with the capital to do as much as Autism Speaks does.

Going into hostile territory like the NAC seems to me to be foolhardy and unlikely to lead to more awareness in that population of what AS does and is working to do. But it’s well above my pay grade.  Then again, if I were paranoid, like, say someone who could write this, “AS is in survival mode and it will swat down or swallow anyone or anything that threatens it,” I might think it was up to something and intends to “swallow” the NAA.

Good thing you’re not an actual organization, Age of Autism. Shew. Or you might be next.

Stink Creek Stories: The Flaccid Twonks

September 12, 2011

And now for a brief fictional interlude:

The Flaccid Twonks of Stink Creek

Thelma here, after a long dry spell in Stink Creek, with lots to share. We had a bit of excitement this summer. We had four old-timers convinced that the lack of rain was to blame for their lack of mojo. Mamma H had the Raisin show them how to get that back to working order with a short visit up to the Sister’s, but it didn’t do no good at all. They kept sitting in a circle at town square muttering to each other for most of the day.

The town council bought went crazy from concerned citizens pestering them about the old-timers, who’d grown up and grown old belonging to an exclusive team called the Twonks. Louise and I, we grew up with the twonks, and we never could figure out quite what they meant by the term, but as we got older we decided it must have had something to do with being right assholes, because that’s all they ever were.

We were lucky enough, as a town, that the twonks kept to themselves, muttering over the years into their beers. But this last year, things have gone down hill, and they’ve gotten worse than Willa and her tendency to hide on people’s decks and hollerin boo at them when they came out to get their papers. They’ve decided it’s their job to police the town for compliance of town rules. They went to the library and found our original town charter and are going around and attempting to enforce it.

Well, what could the council do? What with the lining up right behind Willa with their clipboards and their muttering in the town square, no rain, lots of heat, and Louise’s seniors seriously bent out of shape because Louise skedaddled to Vegas for the summer to run a series of workshops there, Edna and I were drafted to tackle what Stink Creek citizens were now calling the flaccid twonks and see if we couldn’t help heal their mojo before the town ran them out.

Edna’s husband was just glad to get her out of the house, and I’ve been bored silly since Louise went to Vegas and the emperor decided to take a mess of students to Rome for a grand tour. Mamma H and the raisin are so busy making the best of their remaining days they aren’t fit for conversation and the damned raccoon went off to the woods again on me, due to an unfortunate incident involving Mamma H, her walker, and the raisin’s amorous pursuit.

So since the Sister’s hadn’t managed to rouse the flaccid twonks, (go figure), Edna and I decided we’d do a rain dance down at the town square and see how many of them town ordinances we could break at the same time. Ya’ll picture the lovely Lieutenant Uhura in that movie where Kirk asked “god” what he needed with a space ship, and you’ll know what we did.

We got us one of them old boom boxes that Louise still has from the 80s and her flash dance music, and we set up a little tent near the town statue, and we got all nekkid and greased up…We put in that flash dance sound track, got it blaring, having warned the townsmembers to stay home since we were going to be all exposed and such. While we were doing that, Willa set up some sprinklers high up on the statue that the flaccid twonks wouldn’t see. Edna and me sat there in that tent in our finest, so to speak, and waited for the twonks to show up.

Lord, we got sweaty, and then Edna pulled out her flask, and we got drunk while we waited. And then the flaccid twonks showed up, muttering about the music and wondering where everyone was. Willa was cackling behind the statue.

Edna lurched up, smacked me on the ass (which I thought was rather rude), and out she went, up to the first flaccid twonk, and she began shimmying, shaking and, well, let’s be fair, wobbling and bobbing. It was not, I fear, a pretty sight. I brought the flask out with me, handed it over to the second twonk, who dropped his clipboard.

I had forgotten to take off my combat boots. Well, perhaps I was not a pretty sight, either, but I nodded at twonk two and turned to three and four and started gyrating to “Lady, Lady, Lady” while I hoped like hell Willa would quit cackling and turn the sprinklers on.

Two more songs in, the twonks were all standing there watching us, grinning for the first time this year, and the rain still wasn’t falling.

Lordamighty, there was thunder, though, and lots of it as Edna and I got to going. The weight of the world that we’d been carrying all our years was making thunder and had the twonks looking to the sky for lightning. And then the rain fell. And it wasn’t Willa’s doing. She’d collapsed in a colossal giggle fit.

Lordy. The rain fell. And the lightning came. The thunder ceased to be our making, and the twonks, bless their shriveled hearts, were no longer flaccid.

And that, dear friends, is how Louise found me when she pulled back into town. She’s promised she’ll never leave me alone again.

In The Land of Dwell

September 11, 2011

…for Kathleen

Conscience is that still, small voice that is sometimes too loud for comfort.  ~Bert Murray

If you get through entire days in which you do not find yourself struggling to find the right way through the brush, to do the moral thing over the expedient thing, the hard thing over the easy, then the chances are that you’re not doing it right. Each day we are confronted with moral and ethical dilemmas, choices we must make: take the high road or the low, or some middle ground that leaves us feeling more than a little soiled. It’s that middle road that gets me, every time, and leaves me stuck.

I live, like many, I am sure, in the land of dwell. Bush Jr. once bragged that he made a decision and never looked back. If we don’t look back, we can’t learn from the mistakes. You see how well he learned. I don’t tend to admire people who don’t spend a wee bit of time in the land of dwell.

However, the price of living in the land of dwell permanently can be great. And it can be crippling. It’s definitely exhausting. I’m not sure I always find my way out, either. Maybe that’s obstinacy on my part, or that there’s no clear route. And oh, how that drives me crazy. There should be clear rights and clear wrongs, lines in the sand that aren’t to be crossed, not lines that zig, zag, curve, and weave.

And so I dwell on the little things that matter not and on the big that seem as if they absorb all the space. At least all my focus.

It’s a bit like Alice in Wonderland, maybe, this autism world, where monsters lurk, cats grin, and we’re all late, late, for a very important date.

Imagine…

September 8, 2011

Learning will be cast into the mire and trodden down under the hoofs of a swinish multitude.

–Edmund Burke, brilliant bloke

Imagine a belief so tightly held that any one who spoke against it was instantly vilified. The autism community wastes so much time, so many bytes, vilifying others because of differences in beliefs about  causations, differences in beliefs about treatments, differences in beliefs about whether autism is a personality to be cloaked in pride or a crippling disability to be cure of at all costs.

Stephanie wrote a follow up piece to one I wrote on facilitated communication and the central proponents of neurodiversity being staunch advocates and promoters of FC. In the comments she wrote that she doesn’t commit “to the hard-line scientific stance” I do.  Ah, and there’s the rub. In the autism community itself, I’m not sure very many do. Fair enough, in the wider world, most don’t.

Most people are not skeptical. That doesn’t make me superior, better, or infallible. It doesn’t even make me insusceptible to well-packaged woo. Hurt enough and you’ll try a lot of stuff to make the pain go away. Suffer enough and you’ll do anything, skepticism gone in the midst of desperation.

I get it: most people like a little bit of woo in their lives, dwell in grays so much better, appreciate the idea of things that can’t be reduced to scientific facts.  My first thought after reading that comment was that if more people adhered to hard-line scientific stances, there’d be a whole lot less people getting hurt by woo.

And there’s so much pseudoscience masquerading as science that one wonders that anyone can wade through the muck of it and come out clean. And this is endemic. Perhaps even epidemic. Nay, I say it is a veritable frakking tsunami.

So while I wish more people took a more skeptical approach to the treatments they choose to use, endorse, sell, etc, I understand how compelling testimonials are, how persuasive the pitch men are, how bad it can be when one is suffering and simply wants relief, whatever the cost: my beef isn’t with them. It’s with the charlatans who take advantage of others. And, yes, it’s against those individuals who, despite the exposure to the science, choose to push it, promote it, and skewer anyone who dares to speak out against their own sacred cow.

Rachel asked in a comment to my post on Autism Speaks and Wakefield if I would back off my denouncement of the neurodiversity movement given Autism Speaks’ unfortunate,  misguided decision to sponsor the National Autism Association’s convention. I’m not backing off my denouncement of a group that’s supported FC since at least 2008. That’s not evolving; that’s maintaining the status quo.

I’ll acknowledge political expediency and the need for groups to appeal to the largest number of people when raising money. Sometimes inclusion isn’t about a belief in inclusion. Sometimes it’s about the money, and there can be no doubt that the more inclusive a group is of its core constituency, the more money it will raise, the more supporters it will have.  This is true of all the autism organizations that raise money or accept donations. Most of those organizations are run so that there are 990s each year for them so that some level of transparency of what funds are raised and how they are dispersed is there for the public to make a decision. At least we can look and make our decisions based on that level of transparency.

When bad men combine, the good must associate; else they will fall one by one, an unpitied sacrifice in a contemptible struggle.  –Edmund Burke

We stand, this community, in so many divides now, that it’s a wonder any two of us can get together on anything. And yet we do.  I know we do, as I see it in bloggers who support each other on a daily basis, wishing the others well, praying, caring, giving.

“I am convinced that we have a degree of delight, and that no small one, in the real misfortunes and pains of others.” –Edmund Burke

Yes, some seem to travel the interwebz looking to get their rage on. It happens far too often and has nothing to do with the people they attack or what the people are saying. Reasoned argument far too often gives way to nasty mudslinging to see who can inflict the most harm. And this is certainly not restricted to our community. Oops. How dare I call it a community, right? Divisions…

A community doesn’t mean everyone is homogeneous and shares the same features. It doesn’t even mean it will share all the same goals and core beliefs. And we constantly shift our communities, from the micro level to the macro to suit our needs at the time.

Money, well, that’s a great leveler. Everyone can belong. And so is hate. Hate the same group as us? You’re in, buddy!

Here’s the thing. I get that the people in the autism community are just that: people. They have agendas, ideologies, axes to grind, all the grist and mill that accompany social groups of people. Add to that, we have the fact that almost everyone in this community has some issues communicating clearly, and that’s even if they’re “neurotypical.”

And I reject neurotypicality. It doesn’t exist. And for those who would tell parents that we not only don’t belong to the neurodiversity community, we don’t belong to the disability community, I’m going to borrow Colbert’s wag of the finger (you decide which finger that is), and point out that the disability community is a large segment of our population and the older one is, the more likely one belongs to it. Don’t assume that a parent doesn’t have an issue, a disability you don’t know about because he or she hasn’t disclosed. I won’t presume your functional level based on what you can do on a keyboard if you won’t assume my lack of disability.

Dyspeptic: or One Hell of a Rough Night (Again)

September 5, 2011

from 8/24/2011

I have GERD, and had spent a couple years on medications like prilosec and nexium until the side-effects of those meds became worse than the problem. Last spring it was suggested I would probably need to have Nissen fundoplication before I ran screaming from the gastro’s office. Okay, I didn’t run screaming, but I did walk out going “No way in hell.” I haven’t been back to him since. After stopping the nexium, I actually saw improvement in many of my issues and had less acid reflux. Look,  a little bit of heartburn I can deal with. Waking up with the dratted stuff in my mouth, not so much. It’s extremely unpleasant. Last night I woke up with the feel of it all the way in my nasal passages. It felt like it was burning my nose hairs, and (forgive the TMI) I spent an hour vomiting until there was nothing left to, and then another hour heaving. It was NOT a good night.
So what the hell do I do? I was sleeping in my recliner sitting up when this happened, and this happens three times or more a week.

Go back to the gastro? The surgery is off the table. Seriously, as you will not get me on the table. Sigh. Okay, so let’s look at the things that could make this issue improve and see if I’m doing any of them.

Treatment

To prevent heartburn, avoid foods and beverages that may trigger your symptoms. For many people, these include:
Alcohol
Caffeine
Carbonated beverages
Chocolate
Citrus fruits and juices
Tomatoes
Tomato sauces
Spicy or fatty foods
Full-fat dairy products
Peppermint
Spearmint
If other foods regularly give you heartburn, avoid those foods, too.

Hahahahaha. Oh crap. Well, there goes being a lush.
Hee, yeah, you’re getting caffeine, carbonated beverages and chocolate away from me!

No, seriously. Apparently my life style is a problem. I live on caffeine, drink diet sodas, treat myself to chocolate, love Italian dishes, suck on peppermints. I do it all. Last night’s awful episode undoubtedly resulted from the rocky road ice cream an hour before I went to bed last night coupled with the diet coke, hamburger and fries for supper.

I’ve got to make some very real changes. Moving on, let’s look at other changes and see just how bad I am.

Also, try the following changes to your eating habits and lifestyle:
Avoid bending over or exercising just after eating
Avoid garments or belts that fit tightly around your waist
Do not lie down with a full stomach. For example, avoid eating within 2 – 3 hours of bedtime.
Do not smoke.
Eat smaller meals.
Lose weight if you are overweight.
Reduce stress.
Sleep with your head raised about 6 inches. Do this by tilting your entire bed, or by using a wedge under your body, not just with normal pillows.

Well, I can absolutely guarantee I’m not exercising right after eating or wearing tight clothes around my waist. I don’t smoke, and I often sleep in the recliner, sitting up, which makes no impact.

But, I need to work harder to not lie down with a full stomach, I need to lose weight, and I need to reduce stress.

Here is where I laugh maniacally. Reduce stress? How?

Don’t they realize all this just ratcheted the stress up? Give up a diet I eat because I’m exhausted and stressed in the first place and replace it with one of bland foods?

Sometimes the things we are asked to do seem insurmountable, too much to ask, and we gnash our teeth and bemoan our fate. Here’s my bottom line, though: I don’t want another night like last night. I don’t. So, first thing I’m gonna give up is spearmint. Hee, that’s a serious sacrifice, but you know, it’s the right thing to do. I’m also gonna make sure I’m not doing those exercises right after I eat. I can do these two things, no problem. Ought to fix everything, like immediately. 🙂

Nah, I kid. I will find the fortitude to take control and make the lifestyle changes that could improve this. Pills can’t fix everything, and neither can surgeries We have to do our part, too. So, if I nod off while you’re talking to me, it’s because I’ve reached the top of the list and am giving up caffeine. Or because I really imbibed (the very top of the list, alcohol)! No, that one I can cross off the list first, easy breezy along with spearmint.

Now, what to do for stress reduction? Hmmmm.

Wish me luck!

 9/5/11 Update:  Yeah, spearmint reduction has not been enough (joke), and I’ve had a couple similar nights since then, and several others where I just woke up gasping and swallowing that nasty stuff back. I am actively working to remove the things from the list, trying to figure out what are the triggers for this for me. After eating chocolate two hours before bedtime and waking up an hour after falling asleep and vomiting, I’ve decided to move chocolate to breakfast time, per Kathleen’s suggestion. 🙂