8/31/2010

Glorious Sunflowers and A Good Week

It really is busy here, so I haven't had the time to read much in the way of autism news lately (and no Age of Autism at all!).

The girls are adjusting to school and the bus; we're busy here in the evenings as we have time devouring the Animated Batman series, Star Trek and ST:TNG (geeks don't make themselves, you know), and I'm busily teaching a full load and taking two courses. 


While Rick took out some sunflowers this weekend that had encroached on the driveway, the overwhelming bulk of the sunflowers remain (never fear, Lyn!).
Glorious, aren't they?

And that's just the front garden.
The back garden is full of sunflowers, chives, and sawleaf daisies.
 A sea of chives with sunflowers vying for room.
 They're in a staredown.
Reaching for the sky!

The Ivy Wars


Thanks to one of my favorite science-based bloggers (Science Mom) I got the heads up that, indeed, I might actually be facing a real attack of ivy.  Since Rick had not yet gotten the ivy off the windows, out I went this weekend to begin to get it off. I discovered it was forcing its way into the window framing.
I cleared the windows, trimming and pulling, while also capturing photos of grasshoppers, wasps, and walking sticks and a praying mantis, and paid attention to places where the hardiboard panels met, noting that the ivy had appeared to find its way into the seams.
Rick took one look at the places I’d cleared and commenced the war against the ivy.
Pre-War

Round 1

There’s lots of work to be done; Rick had to spray for bugs and caulk the seams. He’ll have some painting to do, too.
Round 2

You can’t tell how thrilled he is. :-)

I got the ivy cleared from around the door, but left it on the deck.

And now the casualties:
We’ve compromised and will leave the ivy growing as ground cover, and while we have not won the ivy war, we are on the way to getting it under control. Rick promises to paint faux ivy on the house for me, but now that I’ve got that long wall clear again, perhaps my dream of Kathleen’s and my Thelma and Louise, with Mamma H, the raisin, and the raccoon in the backseat of a red convertible can finally be realized?
Of course, once Rick started waging battle, he got a little carried away and started taking out the sunflowers, too.

8/30/2010

Oh Great, We’ve Always Been Like This


Rick and I have been together for over 22 years. I was going to joke and say LONG years, but have they been? We met when I was 19 and he was 24, at AIT (advanced individual training) in the Army. He was reclassing into terrain analysis and I was a new boot learning how to operate a printing press (boy does that date us?). It’s been more than half my life, and it’s closing in on half his life that we’ll have spent together. I think it’s lovely, actually, that we still tolerate each other as well as we do. :-) I’m still irked that he’s said I have enough roosters, especially when I totally have more buddhas than roosters, and he’s started ripping my ivy off the house (thanks Science Mom for the heads up), ruining the fun of getting scared shitless by critters and writing fun posts about the attack of ivy, but he has a point; it had invaded one of the seams and was growing in the wall.
So, obviously, we’re not identical; we spend a fair amount of time bickering. He spends a lot of time playing Sims 3 while I interact with real (?) people on the internet. We disagree on chotchkies every now and then. But overall, we’re very similar, even if we take completely different routes to get to the same place. In fact, what drew me to him in the first place was a recognition that he was a kindred spirit. I can still see in my mind that first encounter. I know when it happened, and it still makes me smile to remember the first time I ever saw him, and then a few days later, the first time we ever talked.
I don’t think we’ve grown more alike over the years, but we’ve continued to share similar interests (though not all). I think we’ve settled more firmly into ourselves, our skins, and we’ve been able to do so because of the unconditional love and support for the other (you know the kind of support that says ‘go ahead, do what you want as long as you don’t expect me to alter my life so you can do it’ kind of support). But still, as a science-based person, what I want to know is, were we always relatively disorganized and pack rats or can I blame that on Rick?
A new study looks at whether we marry people like us or we become more alike over time. Humbad et al. found that it appears to be a matter of marrying a partner who’s similar to us rather than a matter of mind-melding (okay, they didn’t call it mind-melding, but that would be totally cool).
Is this revolutionary science? Eh. No.  But it’s good to test common sense notions and see if they hold up to the scrutiny of science.
So, I’m guessing, based on this latest science, that I can’t blame my trunk’s messiness on Rick’s tendency to messiness?
my trunk, filled with psychology tests I need to take into the office
Rick’s trunk. I have no idea what his excuse is.

Damn.
Reference
Mikhila N. Humbad a,*, M. Brent Donnellan a, William G. Iacono b, Matthew McGue b, S. Alexandra BurtPersonality and Individual Differences (2010). doi:10.1016/j.paid.2010.07.010

Updated from post over at wordpress countering: Rick cleaned his trunk after I made the original post. Turkey. 


8/29/2010

Sunflowers

It's All Thelma's Fault


I don't know when it happened. I really don't. But somewhere along the line, I've added roosters and chickens to my things of must haves. Here's today's addition. (We're not going to even talk about the two rooster throw rugs that came in the mail today. We're just not).
The rooster salt and pepper shakers were Monday's addition. I now LOOK for chickens and roosters when I go shopping! 

What the hell? And I've started sipping Wild Turkey, too, mixed in with diet coke. Thelma is growing on me, I tell you for damn true. I'm stopping at the raccoon, though. Everyone has to have a line in the sand. The skunks, snakes, and possums out in the garden can stay, but they ain't coming in. I have a line, people. A line!

Or is it Louise's fault? She started it with her Luther story and chickens!

8/28/2010

Joy and Sadness All At Once in the Garden

The spider is gone.

For most of the summer, each time I've gone out to the back garden, I've checked on my spider and often photographed it. I've admired her growth, the intricacies of her web, delighted when I've actually seen her move rather than perch like a statue upon her web as I weave my way around the frogs to get close enough to get the perfect shot.

Last weekend is the last time I saw her; I didn't make it out to the back garden all week, and I can't help but wonder where she went. I am saddened. She was magnificent. 

There will no doubt be plenty more spiders in future years, just as each year of the garden in the past has had its share of spiders. I will, of course, photograph and enjoy the future critters of each year's garden and revel in how up close and in person I can and do get with all gods' creatures while I work in the garden.

Today alone brought bees, grasshoppers, and a walking stick. Plenty of ants, too, wasps, and little spiders. My garden teems with life and fills my heart to overflowing with its beauty, even when it leaves me saddened at the passing of a season.

 The fish make me grin.
 I think I am madly in love with frogs.
 Bees in the chives.

 I worked around this fellow and the walking stick.

 I love how they just watched me and did nothing.
 Because if they'd have jumped, I'd have screamed. 
I am a girl, you know.
Yeah, I took this picture and got the wasp spray.
I'm not a complete fool. 





(A better version, but I still love Elvis!)

8/27/2010

When Incentives Aren't Bribery: Hell, Do You Really Care as Long as They Do It?

I'm going to admit it. I bribe my kids. Not consistently. But, I do. And I do it intentionally. And shamelessly. And with all the psychological tools concerning positive and negative reinforcement at my disposal. It can be tricky as hell figuring out what my kids' "currency" is, but you better watch out when I do, because heaven and earth move once I do. 

Several years ago we wanted to get the bright boy competent in the water. He did not wish to embrace this concept of competency. He did not want to learn how to swim. He really didn't want to jump in the water. Well, the boy's a fish now, all thanks to an endless frakking supply of Pokemon cards. That's right. I got him to swim by using pokemon cards and some serious mama-insisting that he could and would do it or he wouldn't get the card and he wouldn't get a long list of other things, too. In other words, I doubled up on it and used both positive and negative reinforcements to get him to master the skills I felt were important.

I do it with my girlies, too. Practice is key with our children, but practice isn't always going to work to get them to actually perform, and my girls have never been the kind of children to do things because grownups are asking. So big? Yeah, they were over the age of  four before it dawned on them that so big and patty-cake were fun and made mama and grandma happy. Saying sorry? Pitched battles time after time to get that concept in their heads and make them able to apologize where needed. Greetings and goodbyes still require some rehearsing.

So, both my girls are stubborn. Forget that. They are past stubborn, past mulish and flat out stonish. They ain't going nowhere. Unless you find the carrot. And I've got them this year. 

Lily gets bored with schoolwork and quits. She could, on one level, not care less about her grades (when it's time to do the work) and yet will bawl if she doesn't get As (when she sees her grade, and really when I see it).  Rosie will be interesting to watch this year, her first to get grades. 

I went shopping today and I came home with spongebob, hello kitty, coloring books, rubber figure bracelets, and a plan for this year. 

Lily's having issues with regulating her emotions and controlling her attitude on top of a half-assed attitude towards actually answering questions. Each meltdown, dirty look, hissy fit, attitude, and bad grade gets her a hash mark on the downside. Every A gets her a hash mark on the plus side, as will doing her chores, being helpful, and in general handling her reactions well. Every two weeks, if her plus hash marks are greater than her issue marks, she earns something. Same goes for Rosie. I've got two months of things, plus things for exceptionally good days, so that I mix in a fixed ratio schedule with an intermittent one. Plus, they get to look at these things before they go out the door each day for school and when they come in every afternoon.






The hash marks are cumulative, worth a quarter a piece, and if Lil has enough at the end of the school year to buy a nintendo ds, she'll have earned herself one. Rosie's holding out for barbie dolls. In other words, as long as Hello Kitty and Sponge Bob obsessions last for the next month or two, I'm covered and should be able to help them stay motivated towards doing well. The trick is in externally motivating them, to not do so for every desired action, and to work to maintain internal motivation, as there's pretty good research showing that the use of external motivators on already intrinsically motivated behaviors destroys the intrinsic motivation.

So, bribe your kids, but only for the crap they really don't want to do, don't do it every time, be willing to take their crap away from them, and hunker down for the long haul. It's a crap shoot, but at least psychology lets you load the dice.

Someone needs to Adjust her Shades: There's a Disconnect at AoA

"There are independent doctors taking the lead in providing things like diet, chelation, and hyperbaric oxygen treatment.  And if mainstream medicine doesn’t wake up to the truth about treating autism, they’ll find that no one is listening to them anymore." Dachel

Somedays, I'm just flabbergasted. Anne Dachel lives in an alternate dimension. She must, because her reality bears no resemblance to mine. Okay, I concede. Maybe I live in an alternate dimension, one where scientific evidence trumps woo. I wish.

So, I click over to look at what has Dachel calling her post "Brightness in Otherwise Dark Autism Media Coverage," thinking that they've decided to take a break from their usual steady dark and gloomy, conspiracy-theorist woo fest. Hee. No, no, no. Instead, she's found two stories where reporters report woo as reality, and promote the pushing of alternative treatments.

Okay, that's fair, I guess, to think that when reporters agree with your view of reality that it's a ray of brightness. It's like when Lauer quit kissing Wakefield's ass and got a clue, for us. 

I read a tweet from another parent wishing for a definitive answer so folks would quit arguing about vaccines. I remarked God himself could declare it and it would make no difference. It would not. Not one iota.

Vaccines are a distraction; we argue with them over it because we have to; we can't allow them to derail the vaccination program and see our nation once again live under the looming shadow of fear of deadly childhood diseases.

Most of us don't know what it's like to watch a child get sick and feel our hearts stop while we wait in fear to see if this is the illness that will take our child from us. Aren't we incredibly lucky for that? We don't tend to bury our children from a puncture wound from a nail, from a nasty cough, or when strep throat turns to rheumatic fever. We don't see these infectious diseases much. We don't see sepsis often in children from blood borne infections that spread everywhere and shut down organs.

Yeah, I'm going to hope that the majority of parents with kids on the spectrum can be reached, supported, helped, and provided with good information before they decide to go all out and start chelating and hboting their kids in the incredibly frakked up hope that it will cure their child of autism. But that's just me in my alternate dimension, where knowledge overcomes ignorance and reason prevails over rampant emotionalism.

8/26/2010

Sometimes Being a Good Enough Parent Takes All We Have

As a guest editor at Lisa Rudy's About.com site on autism, I've gotten to read some interesting books in the last two months to review. Perhaps one of the most challenging books to read was Kim Stagliano's forthcoming All I Can Handle. My review for the book is up on the site. The audience at the About.com site is assumed to be parents new to the diagnosis looking for information and not aware of the large online dysfunctional family that's out there waiting for them, so the review is tailored to an audience who doesn't know Stagliano, doesn't know Age of Autism, and has been blissfully unaware of the shitstorm of controversy that awaits them. That shitstorm is by no means Stagliano's fault. Well, maybe a little bit, but I'm every bit as direct, so I can admire moxie, even when I think it's misdirected.


So, the review at About.com is specific to the memoir itself and rather short. Is it a book I'd send brand new parents to? No, it's not. But hey, I wouldn't send them to this blog, either. I'd tell them to work hard to find like-minded local parents, to carefully look for online blogs interested in positive community building and avoid all the anger. Our lives are challenging and exciting enough without wasting precious emotional energy on shit that doesn't matter. Focus on the big things, finding ways to help your children, how to work with your community, how to get the help and support you need. You know, big game stuff. Life changing stuff.




So, am I one of the first to get a review out on Stag's book and is there an irony that one Kim is critiquing another Kim's "Kimoir"? Yes.

Kim Stagliano, a mother, activist, and writer, is the managing editor of Age of Autism, a blog that call itself the “daily web newspaper of the autism epidemic.” 

At Age of Autism, the editors and contributors promote the now-scientifically debunked theory that vaccines, specifically the MMR vaccine and thimerosal in some vaccines, are responsible for some cases of autism. Age of Autism in its few years of existence has been responsible for posts deriding many mainstream reporters who have reported negatively on the autism-vaccine connection, for writing inaccurate information on doctors like Paul Offit, and for launching attacks on their version of neurodiversity, defined by Stagliano in her book as “the concept that atypical neurological development is a normal human difference and not what many would call a ‘brain injury’ or disability.”

To be fair, Age of Autism and Stagliano get back as good as they give. To be just as fair, Stagliano’s definition of neurodiversity doesn’t match how it’s used by people who promote neurodiversity nor does it reflect how a charge of being an “ND” is used by the editors, contributors, or commentators of Age of Autism. Neurodiversity, according to Wiki’s definition, which was certainly available if Stagliano didn’t wish to look too deeply, is “an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.”

This November, Stagliano, who has become a well known name in the online autism community, will have her first book, a memoir about raising three girls with autism, published. A controversial, rather loud and often brash mom of three, Stagliano is a staunch supporter of Andrew Wakefield, the doctor, now disbarred, who has managed to create a lucrative career promising parents of autistic children, usually with accompanying gastrointestinal distress, that vaccines were responsible, and that he had a plan to help them recover their children, and one chapter of Stagliano’s book is devoted to supporting Wakefield and to refuting the charge that she and Age of Autism are anti-vaccine.

Stagliano denies the charge that she is personally against vaccines and if the risk of not getting her children vaccinated outweighed the risks of vaccination, she asserts she’d vaccinate. Many of Age of Autism’s opponents will decry this and show specific examples of where Age of Autism provides inaccurate information and openly fearmongers, but new readers will have to take Stagliano at her words. Since some of these words have appeared at Age of Autism, I take her at her word. The problem is that the scientific evidence available suggests that the individuals at Age of Autism have inflated, exaggerated or flat out gotten wrong the risks of vaccinations.

Of course, I have to admit that I’m biased; I write a blog that was begun to counter the site that Stagliano is managing editor for. So you might expect cheap shots or a negative review of her book, but you won’t get that. The writing is occasionally uneven, and the chapters don’t always flow smoothly, and because it was an advance reading copy, there are places where edits are needed.  There are chapters, like one on Howard Stern, that leave you wondering at its relevance, but, this isn’t so much a book about autism as it is what it proclaims to be, a “Kimoir.” Howard Stern is important to Stagliano and the chapter’s inclusion provides information about Stagliano’s personality.

Jenny McCarthy provides a short, one paragraph foreward, where she compares Stagliano to Dave Sedaris and Erma Bombeck. That’s a bit of a stretch, but like these both these authors, Stagliano is funny. Often, though, and understandably so, that funny comes with a side of bitter peeking through.

Stagliano makes clear, often in snarky but funny passages, that this hasn’t been the life she was expecting. She name drops expensive shops, restaurants, and name brands that leave a Texan clueless, but it’s always done to indicate that she came from a more wealthy background and has hit financial rock-bottom several times. Stagliano is honest, raw, and real in this book. She doesn’t hide herself, her faults, or those moments where she is not at her finest. And for the most part, she doesn’t apologize for those lapses. So when she does, she means it and you know it. You might not like her for that honesty. You might disagree with her fiercely, but to deny that courage is to make yourself small.

There is no doubt in my mind that Stagliano adores her children, loves them fiercely, enough so that she gave up her underwear in one scene that had me both laughing and crying. And I did a lot of both laughing and crying as I read her book. I’m not a bit ashamed to admit that. After all, I’m fairly loud and brash, too. Others will have to decide if I’m controversial.

Even in chapters that had me less positively engaged, like the ones dealing with vaccines and Wakefield, I busted out laughing at the title to the Wakefield chapter, which was intentionally funny. I did no laughing at, if you get my meaning. There’s nothing to mock here, although there is at times plenty to disagree with.
Stagliano fills in the gaps with this book for readers who’ve been either loving her or not for several years now, as she’s written autism-related blogs at Huffington Post in addition to her work at Age of Autism. It’s an important book for getting background information on how she got to where she is today and how she came by her beliefs.

What you might have expected, if you’re familiar with Stagliano, but will not find, is a dramatic vaccine injury story for either of her two oldest daughters (the third daughter was never vaccinated). No, instead Stagliano offers up her timeline for her oldest and notes the hepatitis B vaccination and the mercury contained in it and the belief that perhaps Mia “may have had encephalitis” somewhere between two and four months. Stagliano also goes through all of her extended family noting that there are no members diagnosed with autism.
There’s plenty of examples in this book of using anecdotes and availability heuristics to justify Stagliano’s beliefs, and it’s something each of us do as we go through our days, trying to make sense of our worlds, and it’s one of the main reasons why relying instead on scientific studies with large samples are far more likely to render a more accurate portrait of reality than what any one person can recall at a particular time.

Despite some significant issues relating to vaccines and to Wakefield, this is a valuable book for readers wanting more information about where Stagliano’s coming from. It’s not a book for folks new to autism; it won’t provide tips, advice, or a warm, fuzzy feeling about overcoming and positivity. It’s a book better suited to readers who’re already entrenched in the online discussion regarding autism and vaccines and unvalidated, untested therapies versus empirically-based interventions, although oddly enough, Stagliano does not detail some of the untested or dubious therapies and interventions she’s used, which she has written about elsewhere. She does discuss the gluten and dairy free diet and the testing her daughters underwent to determine their reaction to gluten and casein.

This book does provide a window into Stagliano’s often difficult life, and it does not gloss over the hardships involved in caring for children with significant disabilities. It is unflinching, even if it that means it’s less than flattering.

This is a book I’m glad I read. At times I lost myself in it; I related to it in many places. I’ve got three of my own on the spectrum, and many of Stagliano’s fears are my own fears. And I laughed hard in all the right places, and I cried with Stagliano in all the right places, too. You cannot read this without connecting to Stagliano when she’s writing about her daughters, and when you do, you will laugh and cry with her, too, and for that alone, this is a book worth reading.

Do I think she’s wrong on a lot of stuff?  Yes, I do, and I think Age of Autism has the capacity to do tremendous harm to all of us. But I understand where she’s coming from better now and that harm isn’t something she’s intending. And readers who are already active in the community need to understand, as well, regardless of where they fall on the Age of Autism fence, because the chances are that those most fervent supporters are coming from similar places.

If we want to help change hearts and minds, we need to know how folks got there in the first place. Stagliano’s book does that. And if we’re really skeptics and committed to the scientific process, it’s incumbent on us to read it with an open mind. I don’t know that we’ll be singing kumbaya together anytime soon, but I know my adversary better, and I think a lot of the time, we could actually be team players (and where positive goals are being worked on for the good of autistic individuals and families, we ought to be).

 If you’re a supporter of Stagliano, you’ll want to read this and won’t need the encouragement, but at least you know up front from someone on the other side that it’s worth your time.

Are Stag and I going to be best buds? No, probably not. And  that's okay. I connected with her book. I did. And you will, too. There's a price to be paid when  you put it on the line, lay it all out, and take the risks she did. She doesn't deserve to be kicked for that kind of courage and willingness to be vulnerable.

It's not a book that's all about her daughters, but it wasn't meant to be, and despite some people's likely charges, it's not all about her, either. It's real. Real in a time of focus-group tested, watered-down, politically correct bullshit is not something to be dismissed lightly.