10/31/2011

Using Spongebob As Incentive and More


Lily had to present a story she'd written in front of the class, so I promised to buy the last spongebob tee in town, super spongebob with a cape from Spencers. She managed to whisper it to the teacher, which was close enough, so off I went Friday to get the tee. 

They were on sale! Woot! So to mess with her I got an extra large and a small. I put the extra large on and waited for her to get home.





Yeah, it's me. Not.


After the initial "hey no fair" reaction, we showed
her she had her own.



Yay!


And then it came out she'd teased her sister on the bus.
So Rosie got Lily's tee instead.


Lily had to wait two days to get the one I was wearing.


Yesterday they wore Spongebob with capes all day.


Today, with Lily's tee freshly laundered and sans cape, she went off to school with her brand new tee.

Autistics Speaking Day

Last year, a well-intentioned but misguided group tried to get people to abstain from all online social networking so they could get a feel for what it means to be autistic. Corina Becker and Kathryn Bjornstad started Autistic Speaking Day to counter this. Last year's contributors can be found in a listing on their blog for the event.

Last year, I wrote in support of autistics speaking.  I suggested:

Instead I say, go to the blogs by individuals on the spectrum and say hi. Read some entries. Learn what their lives are like. Our children will one day be autistic adults. We want to make sure our children have a good support system, well, let's be a good support system to the autistic adults who are in our midst now.

Sometimes it's hard to be a good support system when miscommunications occur, and it is unfortunate when friendships unravel over disagreements, but speaking out as an ally and knowing when to hush as an ally and allow those who we support to advocate and speak for themselves are important.

So, tomorrow, on Autistic Speaking Day, I'm still suggesting you take time to read their words. You don't have to agree with them at the individual level, you don't have to like them personally, but you should honor their right to speak and that they choose to, that they fight for the right to express themselves, and that they accomplish that.

Someday our kids may get to do the same thing, and we want a receptive, accepting audience for them to feel safe to express themselves, that they will not be personally attacked for that. They must learn that they may encounter criticism, but where that criticism is offered with evidence, they are not being dismissed, but instead treated as equals in the discourse and worthy of debate.

I hope that tomorrow will be a productive and instructive day for those who participate as writers and readers and that dialogues will occur on the blogs and community built.

10/30/2011

Partying for Good Causes!

The kids had been waiting since August for last night's event at Mr. Gatti's. They were so excited they wanted to get dressed for it when they woke up and it didn't start till 10:00 pm! Well, Bob wasn't in a rush, but he was a pretty good sport and let me paint his nails, spray his hair, and put makeup on him.





Day 29 of pink for me. Just saying.
I switched to all black for the party.


Of course, Lil was SpongeBob.

 What happens when Goths age and have kids?



Getting rid of my makeup job.


Telling me he looked better with this look.


Rosie's a monarch butterfly minus her wings.



We had a fantastic time, raised $260 for our local food bank and $260 for Autism Speaks. Not bad for an evening of fun.

Thank you to my wonderful friends and students who came out and made me laugh until I ached and my throat hurt. And thanks, once again, to James and Stormy, who made the night possible by putting up the $500 deposit to make the event happen.

My life grows increasingly richer with wonderful people who make me incredibly grateful for their presence in my life. Makes even rough days easier to smile through, you know?

10/29/2011

Bored on a Saturday Morning? Why Not Troll? Anti-Vaccine Community Offers A Bad Guy To Fight

It's always a little surreal to see a new comment in the email on an old article. The older the article is, the stranger it is, especially when the comment itself is bizarre.

Back in May, I wrote the last major piece on anti-vaccine rhetoric; nothing much more to say, really, as the rhetoric hasn't changed. The article itself was rather innocuous, but the comments got heated. This morning, a person who has commented  on that same piece, I believe (same IP), but under another screen name, wrote this in response to a comment left by Ken Reibel back in June:

Well now, Mr. Reibel, the answer to that is really quite simple. Because you have proven yourself to not be trustworthy in these matters in the past many times over is precisely why you were asked to leave. It's not rocket science. Just as much of what we debate about pertaining to autism is not. I am surprised anyone really had to spell that out for you. You are unaware of your own reputation within the community? I have my doubts. I think playing the victim simply suits you and furthers your cause.
She then continued in general:

 Frankly, I have a really hard time imagining "grown-ups" with nothing better to do than continue to whine and "debate" over this issue five months later. You do yourselves no favors here.
It seems more than a bit odd that the thread has been dormant since the beginning of June and she accuses us of whining. I pointed out that the thread had been quiet until she came back and started it. Rather than responding again under the same screen name she switched from "An ASD mom and first time AO attendee" to "Wah, wah, wah....." and wrote:

The title alone says it all. What was Ms. Wombles and her posse thinking? It's not completely one-sided and intended to bait others? Seriously? Please. And you expect to be treated with dignity and fair play in return. Because that is what you do? ICK! Make me sick. Take a long hard look at your own whining selves, please. Any semblance of fairness is lost in the title, so why bother with any of you. Good grief.....

Considering that the title of the piece is "The Reinforcements That Community Brings: Anti-Vaccine Narratives Provide More Drama," it makes you wonder what exactly the person means. The article itself is fairly sedate and points out that the anti-vaccine community provides feedback and support in a way that the evidence-based community cannot do. It provides a continuous narrative that makes sense of the insensible and is therefore going to be more appealing. Nowhere in the piece is there whining. I stand by my piece from five months ago, enough to repost it below and let readers form their own conclusions about whether the evidence-based section in the autism community is "whining"  and "one-sided."

                                            The Reinforcements That Community Brings:
 Anti-Vaccine Narratives Provide More Drama
from May 31, 2011

Most of us seek out like-minded individuals who will reinforce our worldview. As I remind my students, we hold no beliefs we think are incorrect. After all, if we thought we were wrong, we wouldn't believe it. There's a reason that it can be hard for us to agree to disagree or live and let live, too. If I am certain I am right, and you disagree with me, then you must be wrong.


You can see the problems here, right? I'm not willingly going to go to a place where everyone believes the opposite of me. Neither are you. We wouldn't feel comfortable and we'd feel judged. Now, if we get a buzz out of entering the fray, swaggering into the others' territory to clash, if we cast ourselves as warriors, we'll waltz in day after day, but it isn't like going in as a wolf in sheep's clothing; nope, it's about going into the situation in full-wolf mode, no trying to fit in or create community.


So we've got a fundamental problem here; if the differences in belief systems are too great, there's no way to ignore those differences, and building community becomes difficult if not impossible because there is no sense that we're part of the same in-group. Indeed, the differences are great enough that we cast the other automatically as the out-group, and often, as the enemy. All the better to create a dynamic that provides ready drama and instant hero-status for the in-group members.


This is abundantly clear in the vaccine wars within the autism community. Friday Ken Reibel and Jamie Bernstein were kicked out of AutismOne (lots of coverage on this; links available atLiz's). All that was necessary for the expulsion was Ken being recognized; he's the enemy, and no enemy is allowed inside the sacred walls. And this event allows both sides to reinforce the in-group cohesion and solidarity; both sides push against each other to define their own boundaries.


I'd like to say that the science-based side is the more reasonable side, and I believe it is (it's my in-group and self-justifying along with confirmation biases means I'm going to see it that way), but I don't think we should be at all surprised they expelled Ken. They did it in 2008, too, after all. I think this played out exactly as everyone expected it would and provided the opportunity for each side to reinforce its own narrative and draw its own members closer. It's what people do.


The real question here is how do we combat effectively the growth of paranoia that the Canary Party (Age of Autism and like-minded individuals' latest venture) promises?


How do we effectively rebut people like Alison MacNeil, whose educational background ought to have been sufficient for her not to fall for the fallacious appeals to popularity and belief so that she can matter-of-factly write, "I went to the Green the Vaccines Rally. In the cab back to the airport after the Rally I called my husband. I said 'Honey this really happened. I just stood with 8,000 parents with the same story. We’re not crazy.'”


I don't think we can; she's found a more compelling, more dramatic narrative than the one that evidence-based individuals can offer her. She perceives any criticism as that of the enemy and is consequently inoculated against it. She has no reason to reevaluate her premises. She's got a ready-made community of folks who are the underdogs, fighting the man, ready to accept her and build her up. All we've got are scientific studies and often-pitying head-shakes for her as she tells her tale. Not hardly compelling enough. We shouldn't be surprised when she chooses people who will validate her beliefs.


Of course, those of us who've been in the vaccine-injury trenches already knew we weren't going to reach those who are already in the bosom of that enclave. To them, regardless of how genuine our offers of support are, or how similar our experiences as parents may be, we are the enemy. So we're not going to reach them and trying is a waste of our time.


What most of us are trying to do, then, are the twin goals of holding up ridiculous beliefs to the ridicule they deserve (for a completely different subject, Harold Camping anyone?) while providing accurate scientifically-backed evidence, even when it means acknowledging what we don't know.


After all, it's important to point out that there's more than a bit of "uh-uh, no she didn't" factor to MacNeil when she writes that "The other side has reverted to discrediting the speaker," only to follow up in the next paragraph with this attempted discrediting: "And it’s not like I embezzled millions of dollars from the CDC or was a heroin addict." That's not really support for her claims, is it? Besides, although MacNeil continued that science-based people were trying to claim Wakefield is a "nut" and Jenny McCarthy is a "slut," I don't know of any evidence-based individuals who have alleged that Wakefield is a nut. Dishonest. Unethical. Fraudulent. Greedy. But not a nut. And we really shouldn't care if McCarthy is a slut (not a phrase I've seen used against her unsubstantiated claims, by the way). If her claims are backed by evidence, whether she gets around or not is irrelevant. I think the argument has been that she's a Playboy bunny who doesn't know what she's talking about (and since she thinks antifreeze is in vaccines, it's fair to say she doesn't), but that's not the same as claiming she's a slut and should be ignored.


But again, all this goes to make a more compelling narrative. If you believe that the icons in your group are being attacked by the enemy, it's much more interesting to focus on one's strawman versions of those justified rebuttals of Wakefield and McCarthy while pointing out that on the enemy side, one researcher has been indicted for the theft of 2 million dollars and that one science-based writer is an admitted recovered drug addict. The first is relevant and it's fair to ask what role he played in the studies themselves; the second is an actual attempt at an unjustified discrediting.


How do you reach parents to show support and get there before those with more compelling, dramatic explanations convince parents that there are answers for why their kids have autism and that they can be healed if you just try the right mining chelator or other quack treatment? How do we create a vibrant, supportive community that lets parents feel comfortable in the absence of certainty while having the courage to withstand the temptation of promises of instant cures? How do we make our narrative more compelling than the vaccine-injury's?


I'm not sure that we can, really. If we're not willing to make stuff up, if we're not willing to engage in hyperbole and flights of paranoia, if we're insistent on being as scrupulously honest about the limitations of what we do know, what we can know, and most importantly, what we can do about the limits of our knowledge, then we are at a disadvantage.


Others have compared the anti-vaccine or vaccine-injury movement to religion. And it is; their beliefs are held with the fervor and conviction of true believers so invested in the ideology that they will sell their worldly possessions and hand out pamphlets in New York City, looking mystified and forlorn when the appointed time for rapture passes.

....
It's been five months. Has the Canary Party done anything?  Well, their facebook page has 4,020 likes, so it's grown in facebook following. Their website now has a store attached to it. And it looks like they'll be attending (and have been) various autism-related conventions. The Canary Party continues to offer what I said it did five months ago: a narrative coupled with a way to feel active in getting that narrative out.

Contrast that to those who don't think vaccines are implicated in autism, and you'll see that we don't offer people coming to grips with the reality of autism a clean, neat answer. We don't offer them assurances that their child can be healed or that there's anyone to blame. What we have are maybes and don't-knows and those will never successfully compete with guaranteed answers and the promise of easy fixes.

The reality of parenting a child with autism is that it is an often terrifying job; we don't know how to best help our children navigate the world and we are often second guessing ourselves. We are inundated with so many treatments, pills, books, etc., promising a fix to particular problems, and it's a minefield to navigate. The anti-vaccine segment of the community offers a solidarity and a united front against "the man." It's a lure that's hard to resist.




Caturday





10/28/2011

Pinkkkkkkkkkkkk: Tiaras, Monkeys, and Pizza!

Day 28 into my journey into pinkkkkkkkk. It needs that many Ks. It does. I don't know how Lil does endless SpongeBob; week ten of nothing but SpongeBob (except an occasional Star Trek tee on the weekend). That's a level of dedication I'm not going to achieve. It's not that I don't admire it; I do, but I'm beginning to long for my regular routine of tops! Ah, issues.

Yesterday culminated our breast cancer fundraising efforts at the college. We had a Pink-it-Out Contest at the college, where students had to be pinker than me to win free sock monkeys. We gave out four monkeys! Ah, and I didn't get one. Guess it's good I already have two (even if the girls took them). The Abilene campus focused on the Hope Fund and helped with the main campus's efforts to raise money for the American Cancer Society. We had speakers from both organizations on Tuesday and fed everyone pizza while they listened to what these organizations are trying to accomplish. Pretty cool.

I decided, Wednesday night,  in order to be as pink as possible for the contest that I needed to touch my hair up again (those semi-permanent dyes fade quickly) and that a tiara was a must!


So were temporary tatoos. My students (and even my dad) insisted the dusty rose I chose for the day was really lavender, so mid morning I bought a hot pink tee the firefighters were selling.


Dad showed his support, too, and wore pink and helped judge our contest. He even covered the table two mornings!

Marlisa Goldsmith, from KRBC, showed up to cover our contest and our efforts to raise money for the Hope Fund for free mammograms to women in need and for the American Cancer Society.


Students gathered to compete against me.
We had some phenomenally pinked-out folks!
But these two win hands down.

We lose too many loved ones to breast cancer, too many friends. How many of us are really untouched by cancer? Honoring them, their fights, their lives, is such an important thing to do.

A little effort, four days of sitting, visiting, and selling, and we raised $756 for the Hope Fund for Hendrick Hospital. And I got to wear a tiara and have raspberry pink hair while doing it.

Wherever you live, whatever your situation, there is something you can do to help others. The American Cancer Society is in need of volunteers to help get cancer patients to their chemo and radiation appointments. If you can't drive, maybe you can do something else, like my students did this week, like cutting out breast cancer ribbons to be sold for a dollar at Taco Bueno. We can help bring about big changes by doing our small part. We can change the world, one little step at a time, and we can make some of the best friends of our lives, all by making a little effort.

This weekend, my students and friends and my family will gather at our local Mr. Gatti's, where we will have a blast, eat pizza, play games and socialize. And in the doing, we will raise $5 per person for the local food bank and $5 per person for Autism Speaks. Even something like choosing to spend your Saturday evening having a good time at a pizza joint on a specific night can make a difference in the lives of many people.

How awesomely cool is that? And I get to do that in costume. Even better.


*To Stormy and James, who were there everyday all day and integral to pulling this off, thank you for working tirelessly on this and all our other fundraising efforts. To Casey, for being there for every event, love you, sweetie. And to my most magnificent, awesome students, you are wonderful people with a lot to offer the world!

10/26/2011

Wednesday: In Which I Notice a Trend

Oh how quickly the arrogant, cocky, self-sure fall. There I was last week proclaiming how SMOOTH the mornings were, other than the boy, and now yet another morning in a row, those three are proving to be obstinate, frustrating, loud, obnoxious, and incapable of choosing.

I fixed part of it. At least the choosing. I'm so sick of the words "I'm thinking!" Now, they have one minute to choose. If they don't, they're eating whatever they had the day before.

We prize choice in our society, but Barry Schwartz's Paradox of Choice shows us why too many choices is actually detrimental to our happiness levels. Now, if you know me, my personal thought is no choice is necessary--get it all!--but my kids are often incapable of choosing. It would be easier to never make them choose, but then how will they ever do it?

The reality is that I don't have all day to let them choose their breakfast. Giving them an appropriate amount of time and then making the choice for them (what they chose the day before) solves the problem and will hopefully help them make the choice the next day. It doesn't mean they won't still drive me batty, though.

Why can't they be more like me and just eat the same thing every morning? Sometimes no choice is the best choice of all.

10/25/2011

Tuesday Interlude: In Which I Pretend





I'm going to pretend that there aren't grumpy children behind me in the dining room.

I'm going to pretend that Rosie's decided what she wants for breakfast.

I'm going to pretend that Lily didn't just argue with me about her wearing socks with MY boots to school today.

I'm going to pretend that I can breathe through my nose, that my throat doesn't hurt, and that I don't have a headache.

Hah, and while I'm at it, I will pretend that I am slim, glamorous and wealthy. :) And that pigs fly.

10/24/2011

The Beginning of a Very Pink Week

This week, we're running a breast cancer awareness week at my college--spearheaded by my students, friends, and me--to benefit the Hope Fund at Hendrick Hospital, to provide free mammograms to women in need. Another professor and friend, Terra, with Jacky and Alicia Andreatta, is spearheading the main campus efforts, which benefit the American Cancer Society. Today, we'll both be at the Abilene campus together.

We've got lots of fun planned. We have informational tables, fundraising tables, a speaker lined up for tomorrow and free pizza, and a Pink-it-Out contest Thursday, where students will have to work hard to out-pink me. After all, it is day 24 of wearing pink for me!

In preparation, I tried once again to get my hair pink. :-) This time, a good friend came out to the house and helped make my pink dream a reality.

 In the process!
 Rosie's looking on.
The back.

The side.

The students will have to work 
awfully hard to out-pink me!

Breast cancer is a serious issue. According to BreastCancer.Org:


  • About 1 in 8 U.S. women (just under 12%) will develop invasive breast cancer over the course of her lifetime.
  • In 2011, an estimated 230,480 new cases of invasive breast cancer were expected to be diagnosed in women in the U.S., along with 57,650 new cases of non-invasive (in situ) breast cancer.
  • About 2,140 new cases of invasive breast cancer were expected to be diagnosed in men in 2011. A man’s lifetime risk of breast cancer is about 1 in 1,000.
  • From 1999 to 2005, breast cancer incidence rates in the U.S. decreased by about 2% per year. The decrease was seen only in women aged 50 and older. One theory is that this decrease was partially due to the reduced use of hormone replacement therapy (HRT) by women after the results of a large study called the Women’s Health Initiative were published in 2002. These results suggested a connection between HRT and increased breast cancer risk.
  • About 39,520 women in the U.S. were expected to die in 2011 from breast cancer, though death rates have been decreasing since 1990 — especially in women under 50. These decreases are thought to be the result of treatment advances, earlier detection through screening, and increased awareness.
  • For women in the U.S., breast cancer death rates are higher than those for any other cancer, besides lung cancer.
  • Besides skin cancer, breast cancer is the most commonly diagnosed cancer among American women. Just under 30% of cancers in women are breast cancers. 
  • White women are slightly more likely to develop breast cancer than African-American women. However, in women under 45, breast cancer is more common in African-American women than white women. Overall, African-American women are more llkely to die of breast cancer. Asian, Hispanic, and Native-American women have a lower risk of developing and dying from breast cancer.
  • In 2011, there were more than 2.6 million breast cancer survivors in the US.
  • A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 15% of women who get breast cancer have a family member diagnosed with it.
  • About 5-10% of breast cancers can be linked to gene mutations (abnormal changes) inherited from one’s mother or father. Mutations of the BRCA1 and BRCA2 genes are the most common. Women with these mutations have up to an 80% risk of developing breast cancer during their lifetime, and they are more likely to be diagnosed at a younger age (before menopause). An increased ovarian cancer risk is also associated with these genetic mutations.
  • In men, about 1 in 10 breast cancers are believed to be due to BRCA2 mutations, and even fewer cases to BRCA1 mutations.
  • About 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.
  • The most significant risk factors for breast cancer are gender (being a woman) and age (growing older).

Make a difference and give to the cause. Whether it's your time or your money, your help matters.

10/23/2011

Roses







Dirt: A Review


When Susan Senator asked her facebook friends if any would be interested in reading her new novel, I jumped at the chance. She had me with the title. I love gardening, and it has been my solace, my comfort, my breathing room over the last two decades of parents children with special needs.

It's Susan's first novel, and one she's worked on for several years. She gets it all right. The characters breathe, they are all likable, believable people struggling to do the best they can under enormous pressures.

It's an interior novel with snippets of action, but its power lies in the opportunity to spend time in the minds of the characters as they try to make sense of themselves and their relationship with the others in the family. Gardening frames the narrative beautifully, and makes the movement in the novel flow and have external meaning.

Although the novel ends with no clear resolution, it ends on an up-note, a sense that Emmy and Eric, the parents, have moved through the darkness, the winter of their discontent, and will be able to work together with more compassion for each other and for their children, to do what's best for each child in the family.

Their lives have revolved around Nick, their autistic son, to the detriment of their marriage, their other two sons, and themselves, and perhaps to Nick's detriment, as well. They are disconnected and their reactions to each other in moments of stress are entirely believable. They find support in Tom, the just-right speech therapist who helps the family to reach a moment of resolution to reach out to each other, to seek help, to weather the storms that inevitably face them.

I devoured this book this weekend, reading it as a word document, and found myself lost in it, scrolling through it as if I were sprinting for the finish line, eager to see what the next page would bring.

It's a realistic novel; things don't magically get better, problems don't disappear, but what does crystallize is the parents' intention to see each family member as the unique individual he is, and to honor that individuality and the specific needs and issues rather than focusing on how those individuals revolve around Nick and his needs.

It's an excellent novel, one of the better books I've read that incorporate autism into its narrative and one I can wholeheartedly recommend.

10/22/2011

Watching Closely: When the Demands of School are an Issue

There's a tug of war for parents of special needs children that I imagine is universal when it comes to school. How do you know when your child's got a real problem that needs your intervention or when it's an issue that you need to let them work out on their own?

We're always in hyper-vigilant alert-mode, looking for issues before they crop up so that we can be on top of it, in fix-it mode. Some issues, though, aren't ours to fix, but ours to teach our children how to navigate on their own.

Many years ago, my solution to Bobby's schooling was to be there with him and then to remove him entirely and home school him. Each decision was agonizing until the final decision to bring him home. After his stroke, decisions like that became easier. As he's reached adulthood, there have been different types of decisions, every bit as agonizing for me as when he was younger. This summer making the shift from his attending the day center for the disabled to a full-time volunteer at Meals on Wheels and the local SPCA was a tough one. Leaving him that first day at Meals on Wheels, alone, with strangers in the REAL world was terrifying and walking away from him that morning to let him navigate that new world on his own was harder than leaving him at kindergarten so many years ago. But I did it, because, as my mother wisely reminded me, we'd been working towards that moment, for years.

It's worked out well. He's happy there and there have been no issues. He's a hard worker and is doing fine. I don't know whether he'll move beyond where he's at, whether he'll be able to one day support himself, but if he can't, he's in a good place doing good work.

The girls' journeys at school are not nearly as difficult or scary, but there are still hurdles to get over, concerns that worry us, judgments to be made. When Lily started school, we didn't know how she'd do, what her functional level would be. Over the last five years, though, she's proven to be extremely intelligent and able to function well above grade level. We've had to push, cajole, incentivize, argue to get her to do her school work at the level we know she's capable of. This year, we seem to be losing the battle and in the subject areas where we know she tests highest. No, she's not failing, but that's because the effort is non-stop to keep her trying. It's still a 20 point drop, though, in one area, and that's significant.

How do we decide what's the underlying problem? How do we know if we've hit a wall where her autism makes it difficult for her to answer questions because the questions have become more difficult as they move to inferring what characters are thinking and feeling? Or decide whether it's boredom on her part? Or any of a hundred other possible things? It's been a more complicated year, no question about that. She's making friends, but she's also dealing with teasing and moving between three classrooms instead of two.

We'll continue to watch closely, to advise from home, to assist at home, to work to give her the tools to navigate this world, but we'll be looking for those key signs that signal the public, mainstream classroom is no longer appropriate for her, and when we reach that point where the gains don't far outweigh the problems, we'll make the decision to home school her.

We're not there yet, though. We're in that gray area where our guts churn, our hearts ache, and we watch, work, and wait, all while really hoping that choice doesn't have to be made, that with the right tools and motivation, she can navigate this new, increasingly complex and demanding world.

10/21/2011

A Beary Happy Friday



oops.




Bears are good for lots of things.