This is so…me.

Happy New Year to everyone! I wish you a 2009 full of realized dreams, reached goals, good health, and much happiness.

To calm my mind, I took off for the beach on Sunday. The election has been one constant mind-sucking hyperfocused long haul. Being able to take pictures, listen to the surf, and enjoy the post-storm turbulence was a good thing for me to do.

Hyperfocus like I’ve had for almost a year is not a particularly good thing for me, the people around me, or the workload. I essentially piled on 4 or more hours a day of work to what I was doing, and even more reading.

Even more of a shock? Coming up for air on November 5th with joy at President-elect Obama’s victory, incredible disappointment in California’s acceptance of Proposition 8, and the sense that the energy I faced the day with was going to be difficult to sustain without the ‘fight’ mode I’d become accustomed to. For the moment, I’m trying to dig out of some work backlogs, stay focused, and still enjoy life.

However, I have some posts in the pipeline that are more than photos, so please stay subscribed. It’s been a long haul to the finish line, but crossing it just means the next race starts, which for me, is the long and the short of the thing.

The difference between this:

and this?

Attention. Specifically, listening. Had I not been lost in the challenge of getting picture number one, I would have known that picture number two posed a serious danger to me, the camera, and my current state of dry.

But I wasn’t. So at the point where I should have been stepping back out of the way, I was walking forward, working to frame photo number one.

This has been my theme for the week. How to listen to the conversation, to the flow, to intuit a direction without mapping it myself, how to prevent being soaked and wrecked while hunting for the wide-angle shot, how to balance focus on my agenda with attention to what (or who) is around me.

I’ve had magic moments this week mixed in with utter disasters. In each case, the failure was to listen — really listen — to what the other person was saying. The successes involved setting aside my own tune to listen to others for a minute.

I am not known for my wisdom when it comes to where I place myself to get the perfect photo. I tend to jump out of comfort zones, wander metropolitan cities at midnight from time to time, and lose myself in the imagining of what an image might look like in its final form, often to the exclusion of that great big whatever lurking in front or behind me making noises that beg for me to get out of myself and into reality.

You think being doused with salt water might be a call to consider a bit more attention to present reality? Well, the camera survived without a drop, because I jumped back and hit the shutter button simultaneously, so as long as I can dodge I expect I will continue to wrestle with the attention question, particularly in an artistic context.

Although I’ve stayed outside of the autism/vaccination debate, make no mistake: I do not believe vaccinations cause autism, but I do believe there is a group hysteria around the topic that’s fueled by some clever, smart, vocal parties who have a vested interest in getting others on the bandwagon.

Consider Jenny McCarthy, who would love to sell more of her books about how her son was ‘cured’ of autism. How insulting to other parents dealing with living day-to-day with their autistic children! Or the Rev. Lisa Sykes and her husband Seth, who have a $20 million lawsuit pending against vaccine manufacturers and would love to win it — big bucks and glory in it for them, after all.

On the other side, Kathleen Seidel blogs for Neurodiversity.com and has written extensively against the theory that autism is caused by vaccines. She has been subpoenaed by the Sykes’ and the scope of the subpoena (PDF) should frighten every blogger out there, no matter what their topic.

Liz has many, many details here. You can also Digg this story here. According to Liz’ post, the opinion of one who reviewed the subpoena was this:

…the first phrase that occurred to me on looking through the subpoena was “fishing expedition”, and the second was “intimidation”. Several clauses indicate that Shoemaker is hoping to turn up evidence that Seidel has accepted support from the federal government, or from vaccine makers, which she says she hasn’t. Also among the documents demanded: Seidel’s correspondence with other bloggers.

One of those other bloggers is Liz herself.

Basically, these people are making an assertion with absolutely zero fact to support it that Kathleen Seidel is a pharma and/or government shill, and has possibly conspired with other bloggers, the government and pharmas to damage their case.

They should have a problem with this. After all, they don’t get to go on a fishing expedition for random nuggets without some basis for doing so. Unlike their autism argument, they actually have to PROVE a link between these bloggers and the defendant in the lawsuit. Unlike their autism argument, they do not get to pick and choose facts to fit the situation, because the judge is the arbiter of such decisions.

If plaintiffs in lawsuits are permitted to use their standing in a lawsuit to silence bloggers, we all lose. Kathleen Seidel had the resources to be able to file a motion to quash the subpoena, but not everyone does. A blogger who writes fact and opinion, who is honest and transparent in doing so and who does so in the spirit of informing and discussing issues should not have to face an unfair violation of her privacy as well as other bloggers who have supported her in the past, present and future.

More to the point, the Sykes’ use of the subpoena seems to be specifically targeted to suppress dissent, something that should never, ever be tolerated or sanctioned by the courts.

It doesn’t matter where you stand on the question of vaccines and autism. If you want to be able to write about it freely and without intimidation, support Kathleen Sykes, because the underlying principles affect each and every one of us, whether we’re writing about autism, ADHD, Twitter or tech.

The violation of Kathleen Seidel’s rights is the violation of all of our rights. It’s time to stand up and tell the lawyers we’re not spineless, nor are we voiceless, and they are not going to suppress another blogger’s right to speak with their legal subpoena hammer.

Related Links: EFF: Legal Guide for Bloggers, Anti-SLAPP Resource Center

Technorati Tags: autism, vaccines, sykes v bayer, subpoena, kathleen seidel, liz ditz, neurodiversity, advocacy, intimidation, suppression, quackery, skepticism

I wasn’t exactly happy to read that Shire had raised the price of Adderall XR by 33.5%, following the trend of other pharmas to raise prices on medications that are shown to be effective and are often prescribed.

According to the WSJ article, the higher prices are supposed to force patients to new medications as the older ones’ patents expire:

It’s a tactic that pharmaceutical companies use “to shift patients to next-generation drugs by making old ones so expensive,” says Michael Krensavage, a drug-industry analyst with Raymond James & Associates. For example, Sanofi raised Ambien’s price ahead of its loss of patent protection last year so that it was more expensive than Ambien CR, a new formulation, to encourage patients to switch to Ambien CR, which will be patent-protected for several more years.

These kinds of practices are great unless you happen to be one of the schmucks who has to fight like a dog to get your insurance company to approve a medication that works, and still end up paying huge copayments on them.

The moral of the story seems to be this: In the short run, you might save money by switching to a newer med, but in the long run, you’ll save money by sticking with the one that works.

Really, this practice shouldn’t be allowed or tolerated by doctors. Why switch if it works?

Technorati Tags: adderall, adhd, medications, pharmas, price fixing

Congratulations to everyone who blogged these ads and signed the petition. The NYU Child Study Center has decided to pull the ads. From the WSJ Health Blog:

Today, Koplewicz told the Health Blog that he decided to pull the ads because “the debate began to become focused on the ads themselves” rather than on the disorders that they were intended to highlight.

Koplewicz insists there wasn’t a particular incident that spurred the decision, but told us that “many intelligent individuals and reasonable individuals were telling me they were reading the ads in a different way” than they were meant to be read. Many parents said they felt blamed for their child’s illness even though they were getting their child the best treatment they could, which was not the intention of the ads, says Koplewicz.

He has received thousands of phone calls and e-mails since the ads became widely publicized, about 70% against the campaign. Although he heard from parents who said the ads spoke to them, “simultaneously we unintentionally hurt many other people’s feelings,” Koplewicz says.

[Edited at 5:12PM to add WSJ blog link]

Technorati Tags: NYU Child Study Center, Ransom Note, ADHD, Autism, Asperger’s, depression

Nor am I a “hostage”. Calling children who have psychiatric and neurobehavioral disorders “hostages” is insulting and offensive. Like Katherine, I have to wonder what the hell they were thinking. This ad is utterly offensive. It emphasizes all the negative, none of the positive.

My first thought was that the NYU Child Study Center had been handed off to the Scientologists. If you’re offended by the intentional exploitation of disorders like ADHD, autism, Asperger’ s Syndrome, depression and other childhood psychiatric disorders, sign the petition.

Here’s their justification for the shock-jock campaign:

“Ransom Notes” may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We understand the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

Is a dialogue necessary? Sure it is. A reasoned, educated dialogue. Not making a victim of my successful kid. And you know, some could say that his success can be attributed to his treatment, and I’d agree. But there are other kids whose parents choose different approaches and their kids are successful, too. So let’s talk about what’s working and what’s not, but always, we should be celebrating the gifts that come with the disabilities.

Technorati Tags: ADHD, autism, childhood psychiatric disorders, aboutourkids.org, ransom notes, ad campaign

While I was watching my beautiful 13-year old girl dance last Friday, the Megan Meier story hit the Internet.  Hard.  It hit me hard, too.  Right in the gut, because I walked in that 13-year old’s ADHD depressed shoes many years ago and could feel what she felt, just reading the third-hand accounts. 

Long story short:  In 2006, Mom of an ex-friend of 13-year old Megan creates a persona of a good looking boy (16-year old “Josh”) on MySpace in order to discover what Megan is writing about her daughter.  After a few weeks of back and forth commenting, fakeboy “Josh” writes ugly comments to Megan.  The last comment allegedly reads like this:

“Everybody in O’Fallon knows how you are. You are a bad person and everybody hates you. Have a shitty rest of your life. The world would be a better place without you.”

15 minutes later, 13-year old Megan hanged herself in her closet.  She died the following day.  Steve Pokin at the St. Charles Journal has a comprehensive account of  the sequence of events.  Related police reports are here, BlogHer has some commentary here, and the comments posted on BlueMerle expose the level of outrage felt around the blogosphere.  I am no exception.

Lori Drew is lower than the scum on the bottom of a sewer. 

She is not only an unfit parent; she’s the worst kind of parent — the hovering nanny-watcher helicopter type that Liz writes about — who not only stifles her own child but everyone around her, too.  Micromanaging, vindictive and fretful, she was only out to protect her own “precious” at the expense of everyone else.  As far as I’m concerned, she is a lowlife who should be prosecuted to the fullest extent of the law.  Only, it looks like there is no law that applies.  WTF?  Not only that, but criminal and civil charges are pending against the Meiers for hacking up a foosball table they were storing for the Drews until Christmas.

Yep, you read that right.  The only criminal charges pending are against the Meiers.  Lori Drew is completely unrepentant.  From one of the police reports filed:

According to Drew “somehow” other “my space” users were able to access the fake male profile and Megan found out she had been duped. Drew stated she knew “arguments” had broken out between Megan and others on “my space”. Drew felt this incident contributed to Megan’s suicide but she did not feel “as guilty” because at the funeral she found out “Megan had tried to commit suicide before.”

The report goes on to say that she was upset because the neighborhood had turned against her after discovering her involvement.  Well, duh.  By the way, this report was filed in connection with her attempts to pay a post-funeral visit to the Meier family on Thanksgiving weekend exactly one year ago and the Meiers refusing to open the door or speak to them, with the Drews “banging on the door” despite Ron Meier’s request that they leave his property.

A supposed ex-friend of Megan’s has posted a counterpoint, reproduced here (original post here), describing her as a drama queen, hypersensitive and argumentative. Many parts of the post ring true to me. It’s entirely possible this all was true. She was a child struggling with a weight problem, peer issues, depression and ADHD. Been there, done that. She changed schools because she had been bullied, and had a one-day-friends-one-day-enemies relationship with the Drews’ daughter.

Megan’s struggle with ADHD and depression is at the heart of the matter.

For the benefit of Lori Drews out there, let me explain some things about ADHD and depression:

ADHD, especially untreated ADHD, can lead to depression.  Megan Meier had been diagnosed with depression as early as the 3rd grade and also had ADHD.  It isn’t clear as to whether she was being medicated or otherwise treated for the ADHD, but I’m assuming there was some ongoing work in this area since the parents appear to be pro-active and were concerned enough with her peer issues to have her transferred to a different middle school.

 ADHD also involves sensory issues, making minor things feel major to them.  In earlier childhood, this tends to appear as noise sensitivity, light sensitivity, sensitivity to sudden movements, and anxiety.  ADHDers react to these stimuli in different ways.  Boys tend to be hyperactive.  Girls, not so much.  They tend to be the daydreamers, the ones who retreat, or conversely, are dramatic.  They’re the ones who cry at the drop of a hat and then are called crybabies by their classmates.  I can remember sitting through movies that other people thought were funny  crying my eyes out because the combination of sound, slapstick, light and what I perceived as injury to the main characters physically hurt me.  No one could understand why I didn’t think it was funny.  It wasn’t funny because it hurt.  It’s no secret to anyone who knows me that I do not go to the movies.  I feel constrained, claustrophobic and captive.  This is how some kids with ADHD feel in their own bodies, especially when the hormones rage.

In adolescence, that sensitivity can turn to peer rejection and emotional bankruptcy.  An ADHDer who lives in the present with no sense of the future or the past measures their worth on that moment in time.  This is, I’m sure, why “MeganHaditComing” describes her as a drama queen “freaking out down the hall or screaming at someone for stabbing her in the back or not listening…”  In addition, Megan had weight problems, which might as well be death to a 13-year old’s self-esteem. 

Where “MeganHaditComing” has it wrong is here:  She didn’t ‘have it coming’.  She was a middle school kid (and a beautiful one, by the way, weight or no weight) dealing with inexplicable rejection by her fantasy boyfriend.  And not just “I don’t want to see you or chat or comment on your MySpace” rejection, but mean, nasty, bullying comments designed to cut her right to the quick.  This is intolerable when it’s done by peers, but the real crime here is that it was an adult, fully 35 years her senior who was aware of her depression and ADHD and took advantage of her anyway.

Here’s a news flash for Lori Drew: Megan’s final words to her mother were this: “You’re supposed to be my mom! You’re supposed to be on my side!” Those words could just as easily be applied to you, Lori Drew. “You’re supposed to be an adult! You’re supposed to protect kids, not abuse them online or otherwise.”

Impersonating, stalking and bullying a child online is child abuse

If Lori Drew had touched Megan inappropriately, she would be charged with child sexual abuse. If Lori Drew had taken a picture of Megan getting out of the shower and posted it on the Internet, she would be prosecuted for creating child pornography. If Lori Drew had hit Megan, she would be charged with assault and physical child abuse.

Lori Drew did none of those things.  Still, she abused Megan and took advantage of the MySpace/Internet culture of anonymity to do it.  She invented a boy who seduced Megan into thinking she was beautiful, lovable, ACCEPTABLE.  And then she tore it all out from under her without so much as a tear.  This is the part I truly don’t understand.  How can a 48-year old woman and the mother of a 13-year old girl engage in such an intentionally cruel and hurtful act?  Why didn’t she just write a good-bye comment and delete “Josh’s” profile?  Why did she feel it necessary to post polls saying Megan was a slut, fat, ugly? 

Only Lori Drew can answer those questions, and she chooses to justify her actions via police reports and accusations toward the Meier family.  Only Lori Drew can look at herself in the mirror every day and continue to believe she is somehow not guilty of “loading the gun”, as Ron Meier says.

One family destroyed, divorced, devastated.  Another family moves on, blaming everyone (including the victim), admitting nothing.

As a society, is this what we want to tolerate?  Vanessa says it’s the world we live in.  I disagree.  It’s not my world.  In my world, people who take advantage of children’s vulnerability and disability should be charged with stalking, child abuse, and involuntary manslaughter, because if we do not hold people accountable for intentional malicious acts against children we don’t deserve to have them.

Hug your kids.  Watch their moods, help them overcome their challenges with positive and sometimes unusual solutions.  I wish Megan had felt better about who she was and what she was overcoming.  But she didn’t, and Lori Drew had a DUTY to understand that, not exacerbate it.

Tags: MeganMeier, Lori Drew, MySpace, suicide, depression, ADHD, missouri, parents, helicopter parents, tragedy, TV, internet, cyberbullying

I’m sorry, but I would never do this, no matter how much I wanted to support the Autism Network.

For starters, it would completely embarrass all of my kids, no matter what their age. And second, it reminds me of those awful bumper stickers about “my child being student of the month”, etc. in reverse.

I’m sure the intentions are good, but still…I just couldn’t do it. I’d much rather just buy some nice thing from them that has nothing whatsoever to do with ADHD. Or a book. Or just about anything else.

(via ADHD & LD Resource Blog)

Technorati Tags: shopping, products, autismnetwork

…is it so difficult to write after saying I’ll post one blog post a day for a month which is nothing different than I normally do? It could be that I’ve been off meds this weekend because I didn’t get to the doctor’s office to pick up the scripts in time, which also means Sticks has been off his meds, though I think he’s handled it better than me.

It could be because I’m stressed over the top about money. Money is a big issue right now, more than usual for some reason. Maybe because we’ve taken on some extra expenses with another person in the house, or because checks are particularly slow right now. The bottom line is that cash flow sucks. I know it will get better but when I’m stressed I don’t think about much other than the stress, which slows me down and keeps me hemmed in.

Or maybe I just have an incredibly perverse brain that shuts everything down at the point where I make a commitment.

Or maybe I just have nothing to say, or think I have nothing to say and I promised I wouldn’t write if I had nothing to say.

Ugh.

Technorati Tags: nablopomo, life