3/30/2012

No More "Yeah, But": A Failure to be Accountable

I hear "yeah, but" all day long. I hear it from students at school. I hear it from my children. I read it and see it all over the internet; from autism-land to politics, we have become a nation of YeahButs. And it's enough. "Yeah, but" is ALWAYS an excuse for avoiding accountability, and it's not okay.

It's not okay for students to fail to show up prepared for class or with late work and offer me a "yeah, but" as to why they didn't take the course seriously and in an attempt to avoid the very real consequences that happen when work isn't done.

It's absolutely not okay for my children to ever think "yeah, but" will let the buck pass them by. Accountability for one's actions is a fundamental part of being an equal partner in social contracts.

That's something that many of would like to deny, so I'm going to write it again: Accountability for one's actions is a fundamental part of being an equal partner in social contracts.

I want my children to grow up and take their place in society as equals and that means learning to accept responsibility for their actions. There are no "yeah, buts" in an equal arrangement, not as a way to escape accountability for one's actions. There should certainly be compassion, accommodations, and discussions as to what  equality looks like, but in the end, the individual must own his or her actions and inactions.

Character and integrity demand that. So no more "yeah, but." Not from my students. They can own their choices. Not for children. They can quit blaming each other for their actions. And not for me, either. It's time for all of us, as a society, to stop the "yeah, buts" and hold ourselves accountable for the things we say and do. Owning our actions and owning up to them when we mess up is an integral part of being a responsible member of society. We can't even begin to correct our mistakes if we can't own them.

As students, that means owning the grade that their choices earn them, even when it's not what they want. Nothing comes for free, and learning certainly isn't an effort-free venture, so why should the grade be? Accountability begins with the student. And that means if there are issues that need to be addressed, they need to be addressed before due dates, not after. No more "yeah, but."

As for my darling children, when you yell at your sibling, you don't get to say, "yeah, but he..." or yeah, but she..." Not my problem. You chose to act, so you can own the consequences of that behavior, and your sibling can own his or her consequence for any misbehavior.

If I yell or lose my temper or otherwise screw the pooch, I don't get to go "yeah, but" and I'm not going to play a sympathy card. If I don't do my job, I'm not afforded the luxury of a "yeah, but." The real world doesn't play the "yeah, but" game all that well and it shouldn't.

Just look at all the "yeah, but" going on in federal and state governments. Our rights are being slowly eroded (all while we "yeah, but" that we were too busy to vote or pay attention). Very real crises are being ignored while elected officials "yeah, but" their way into re-elections despite accomplishing nothing worthwhile and plenty that was harmful.

If we want our society to change for the better, we have to set aside the "yeah, but" and get off our butts. All that's required for it to continue to circle the drain is to stay on our butts, yeah-butting all day long.






3/29/2012

Not Apathy, But Weariness: New Numbers, Same Dance

The Canary Party's Ginger Taylor has broken the embargo (courtesy LBRB) and revealed the new 1 in 88 rate that the CDC will be releasing (yes, I guess I've broken it to, except I wasn't given the embargoed information). Age of Autism has a piece on the Canary Party revealing the new number, so it looks like the gang's all together. All we need to make it complete is Orac to cover it, and Liz to start collating the posts on the new statistics, and it will be like old times.

Wait, we need outrage on one side about the numbers as proof that there's a horrible tsunami coming our way. And we need folks blaming the "bloated vaccine schedule." Oh, the Canary Party already did the second. I'm sure Anne Dachel will do the former. Then we need people writing that this is just improved counting, that the kids were always autistic at that rate and there's nothing to see here. Cue the nasty posts and the name calling. And don't forget the charged rhetoric on all sides designed to push their agendas. Autism organizations will leap on the new numbers about the increased cost of autism and use that to whip its supporters into a frenzy of giving.

And I read these things and I sigh. It's not because I don't care, but I think I grow weary of seeing the same things  playing over and over and over again, with little constructive change occurring.

I don't know if the increase in numbers represents a true surge in autism or reflects more kids being diagnosed. You know, like the surge in ADHD diagnoses. I don't see the same level of fever-pitched histrionic rhetoric about the tsunami of ADHD kids reaching adulthood. 1 in 10 kids are diagnosed with ADHD and there's considerable overlap in symptoms in ADHD and autism. Some professionals ignore the DSM and co-diagnose the two conditions, but the symptoms in ADHD are accounted for in autism--the inattention, the impulsivity, and the hyperactivity.

I'm in the trenches, working my butt off with my three kids, who are working their butts off, to help them be the best thems they can be, to find workarounds for those gaps and challenges that cause them serious roadbumps, or where we can't even do that, to not see those gaps as making them less than those who don't have them.

We all have issues; some more than others. Neurotypicality is a myth and the denigration of neurotypicals is just as bad as the denigration of others with neurological differences. Don't think that NT is a myth?

16% of kids in school have a neurological difference causing learning difficulties. The NIMH has a list of disorders and their prevalence and cost. "Mental disorders are common in the United States, and in a given year approximately one quarter of adults are diagnosable for one or more disorders. While mental disorders are widespread in the population, the main burden of illness is concentrated among a much smaller proportion (about 6 percent, or 1 in 17) who suffer from a seriously debilitating mental illness." And that's just adults. Children: "Mental disorders are common among children in the United States, and can be particularly difficult for the children themselves and their caregivers. While mental disorders are widespread, the main burden of illness is concentrated among those suffering from a seriously debilitating mental illness. Just over 20 percent (or 1 in 5) children, either currently or at some point during their life, have had a seriously debilitating mental disorder." And we're talking serious, not those who are less impaired.

So I'm not inclined to freak out about these numbers. I don't dismiss them either, but we've got to (as a society, as professionals in the medical, psychiatric, and psychological fields) get better at naming things, defining them and sticking to that definition. As long as the APA is going to frak around with what autism is and professionals are going to inconsistently apply the criteria, as long as families have unequal access to health care (including the diagnosing of neurological conditions), we're not going to know what the real picture is.

I'm not inclined to fall for the assumption that all families dealing with autism are devastated, as it's just not true. Some families are undoubtedly financially devastated because of severe autism, but severe autism is not the lion's share of diagnoses being given.

I'm not apathetic. I have empathy in abundance for families and individuals struggling, but don't expect me to go to extremes of emotion over the latest round of numbers. That doesn't create change. We need to not freak out--we don't need heights of emotion. We need calm resolve to do the hard work to create real change in the real world. We need better training for parents and caregivers, more effective education (job related, especially) for those with autism and other neurological differences, and we need companies who respect the value and abilities of the disabled to pay them an equal wage for an equal job (see Business Week for a serious fail).




3/28/2012

Conversations With My Boy about Death

It's been nine weeks since we lost Frankie, and for the last seven weeks, here his ashes have resided, with his little box saying Fannie, not Frankie.
I got the new nameplate weeks ago, but it sits on my bar in a little ceramic tray holding rooster salt and pepper shakers.
Yup, there hidden under the pink iguana and lalaloopsie toy behind the toy insects. It seemed like a good place for it.
This weekend, my awesome son, who stretches out new shoes for me, willingly no less, commented to me about Frankie. "When are we going to give him a proper burial?" He's had, bless him, the hard tasks of burying three other pets this past year. Ibit wasn't cremated, and while Rick did the hard work of taking Ib to the vet and bringing his body home, the boy and I cried while digging his grave. It was, while not good work, good work for the soul, to honor this beloved cat. We planted flowers round him, found a nice large stone, and ordered a memorial stone. He repeated the grave digging with my parents' two dogs, whose remains were cremated, and so it makes sense to him that we bury our pets, whether cremated or not.

I told him, my son who doesn't understand this unprecedented delay in a ritual we have always performed over the years (with Max, with Shadow, with a stray cat who died in my parents' side yard, and much earlier, with Boots, with Honey), that I was not ready and Frankie was fine on the refrigerator, where he'd loved to perch and watch everyone.
"But his spirit won't be at rest till he's given a proper burial!" Bobby insisted, which made me exasperated,wondering where he got that idea, how he could not think that his spirit wasn't perfectly happy on the fridge where he could still see everything. Okay, that was truthfully my third thought. My first was where comes up with these things. My second was that if we're going to engage in magical thinking...and then I thought that.

Don't you think, if we really hang around and watch over (and how I hope something continues and pray that it does), he's much happier where he is? I am. 

I am.

Now, to make the boy happier with that, to get him to realize there are all kinds of ways to honor our lost. Mine is to keep photos of my cats who've gone on out, and there are lots of photos out of Ib and Frank. Mine is to look through the photo albums online and remember something happy about them. 

I carry my lost with me, whether they be beloved cats or people, and that perhaps is the greatest lesson I can teach my son and daughters: that we carry them on with us, we honor them each time we think of them and share with others a fond memory, whether it's my maternal grandmother grabbing my face and shaking it and asking where her supper was or my paternal grandmother and her habit of collecting the cheapest knickknacks (which I have, many in my bathroom where I can see them each morning, and spread throughout the house), or my grandfathers, gruff men I did not know well. My maternal grandfather and his blue sweater, him running down the road chasing after our dog. My paternal grandfather who did not go gently, but went mad as hell.

And so many more. We each carry our lost with us, and as we grow, we carry more and more. The trick, the lesson, is not to be so weighed down in the carrying that we can no longer move forward.



3/27/2012

Tuesday Morning Growls

Instead of offering a detailed complaint of why it seems everyone in the house seems to be snarling (three kids at six in the morning), I'll offer these pictures from my garden instead. The rain has made everything lush and gorgeous and calming! Oh, to be in the quiet of my garden instead of herding kids.

Pleasant Tuesday wishes to all of you (and definitely no growls!).














3/26/2012

And the Name of the Game is Strawman

Strawman, leaning against the wall,
How easy a target you make.

Strawman, with your coy, tempting eyes,
How you dazzle us.

Strawman, with your trumped-up puffery,
How you entice people to rage.

Strawman, with your complicated allusions,
How you make us miss the truth.

Sitting in a corner, turned in on itself,
In a fetal position, truth whimpers.

Strawman, strawman, your day grows near.
Your glory tarnished, as everyone realizes.

Strawman, strawman, you are nothing more
Than the emperor in new clothes.

3/24/2012

Saturday Morning Conundrums

The sounds of mowers (ours among the others) can be heard from where I sit inside in my recliner, hiding behind my laptop, trying to ignore the chaos that surrounds me. The kids have gone quiet in their rooms; I can no longer hear peals of laughter, squeals of delight and the rush of their running feet as they run from room to room, wrapped in their play. I've separated them each to their various rooms to clean, and doors have slammed shut, hiding any noise of electronics I failed to confiscate before demanding they de-tornado their rooms.

I've been up for hours, wandered through blogs, read those criticizing Autism Speaks (like I did this week), read those supporting it, and wondered if this constant warfare has contributed to my migraine. There are good posts out there that raise reasonable questions, like Zoe's post on why she thinks people shouldn't give money to AS. Her criticisms are reasonable calls on Autism Speaks to alter its way of conducting affairs. It's reasonable to expect autistic people to be on the board of an autism non-profit, but I wonder, given how Autism Speaks came into existence if that's likely to happen. I agree that too little is spent on families, but that was never AS's mission, so doubt it will change anytime soon. I think compensation issues are legitimate concerns, as well, and wonder why Geri Dawson collects the highest salary while still working full time at a university in North Carolina. Lydia Brown's post, explaining why she felt Holy Cross shouldn't support Autism Speaks' Light it up Blue campaign also raises interesting points worth considering.

While common arguments against AS's research is that it's eugenic in nature, I  know that not all of the research is geared towards prevention or cure, and certainly  not towards prenatal testing in order to eliminate fetuses with genetic markers (which I am against). While most money goes to research, the Autism Speaks website provides valuable resources for families. I've used the tools that Autism Speaks has created for families, from their first 100 days to their school toolkit to their transitioning into adulthood toolkit.

It would be easy and much more comfortable to paint Autism Speaks as all villain or all saint, depending on where you're coming from, but the reality is it is flawed like the people who run it and the people who support it. We're all flawed, all caught on the various tenterhooks of competing demands and needs.

Every autism organization necessarily reflects the biases and perspectives of their founders. Autism Speaks gobbled up pro-cure, pro-vaccine-causation groups, and that creeps through. It's also an evolving organization, and it will try to please everyone who gives money, often resulting in pleasing no one. It's no different from famous autism speakers who always make sure to tip their hats to the anti-vaccine crowd and the DAN crowd at every speaking event while also trying to please those who don't buy into vaccines as a cause or chelation as a cure. It's the quintessential attempt to have their cake and eat it, too: to offend no one so much that the money stops coming in.

The National Autism Association favors the vaccine-caused-it, woo-loving crowd, but they're not all bad. They stand against restraint and abuse; they provide information on how to keep your loved ones from wandering, and what to do if they do wander.

The Autism Society provides a large conference each year with something for everyone, support groups in several cities, but it also favors facilitated communication.

ASAN stands strongly against restraint and abuse and represents autistic individuals. Instead of sending a message of autism as a tragedy, it celebrates autistic voices, and lobbies for legislature that will benefit autistic individuals. It also supports facilitated communication, in an attempt to include all autistic individuals and offend no one who's doing the facilitating.

My point is that every single organization will stand for some things we can support and other things we can not.

We can choose to not work with them at all over areas of disagreement or we can choose to stand together on things we agree on and respectfully disagree on areas we don't.

We ought to be free to voice our disagreements without being thought to be traitors--if blind obedience and complete agreement are expected--that should be a red flag to everyone.

The result of choosing to work with organizations with whom you don't fully agree with can and is often an uncomfortable feeling of cognitive dissonance. I wish I could say I'd found a way through that discomfort, but the reality is that we should feel that sense of discomfort; it keeps us agitating for the things we believe in, encouraging the organizations to consider other perspectives, and making it clear that we are not blind followers but are instead partners of equal value.

So I read all the posts relating to different viewpoints on the various autism organizations and I keep myself open those perspectives. I respect other people's right to make up their own minds and respect them enough to not push my perspective on them in their places.

Respecting individuals' autonomy means allowing dissenting voices and not trying to shout them down. Our society, not just the autism community, doesn't do a great job at that, at least not online or in our legislatures. It's a shame because it is this unwillingness to consider other points of view and compromises that hamper our ability as a nation to solve the very real problems we are facing.