A small anti-green manifesto

We live just over a mile from our elementary school. All through kindergarten, we drove TH to school. The bus just seemed too unfamiliar, a territory we couldn't send him into with no map whatosever. We can't walk to school because it is separated from our neighborhood by a four-lane, divided highway. Yep, we live in Texas.

In first grade, we put him on the bus because he could ride with his younger brother Dubya, who attended his final year of preschool in the same building. That proved to have its moments, which included one incident in which a fifth grader accused TH of calling the older child's developmentally disabled brother a "retard." I got into it with the bus driver over that--she had publicly humiliated our son because of this accusation--assuring her that this was a word no one had ever used in front of our son, one he'd never heard, one he still hadn't a clue about even after this incident, one he's never uttered since. She averred that she and "the supervisor" would watch the videotape of the incident and determine whether or not what I was saying about my son--and what my son himself was saying--was true. It was. TH still does not lie. He just doesn't. He can't even pull off a practical joke because he's so utterly incapable of keeping anything to himself, much less dissembling.

In second grade, we were on the bus for two months before much sh** hit the fan, involving demands from other parents that our monstrous bully of a son be removed from the bus, from school, away from their kids because he was beating them and pinching them black and blue and other terrible, awful things. Turns out, those tales from the Bus Brothers Grimm were simply untrue and that in reality, our son was the one being pinched to the point of bruising, being spat upon, snotted on, threatened with an army of "killer space robots." I realize that there is no such thing as "killer space robots," but still.

One offer for "fixing" this problem was that our son could be placed in a seat at the front of the bus, just behind the driver. Given our previous experience with the observational and auditory processing skills of said driver, we declined this proposal. We did so also given that this resolution would have singled our son out when he was patently not the problem.

Lately, we've been getting urgent, rational arguments in the school newsletter from the principal about having children be bus riders. Saves energy. We don't sit in the car line, pumping poison-laden fossil fuels into the air around the school. We (theoretically) don't pollute as much (although I'm skeptical of this--we all know what buses do) if we ride the bus. These are all relevant arguments. And honestly, it'd be a lot easier to stuff him and Dubya onto the bus in the morning and to sit around the house eating all those bon-bons in the afternoon, waiting for the bus to drop them off. But I don't. I spend what is probably a total of almost an hour in the transport to and from school.

And, as I've mentioned before, as much as I want to be environmentally aware, as much as I believe in my grandparents' generational precepts of "waste not, want not," as much as I subscribe to "recycle, reduce, reuse," I cannot sacrifice my son on the altar of the greater good in the name of being green. I'll be as brutally, coldly selfish as any Hummer-driving, McMansion-dwelling, lawn-watering and fertilizing, parking-lot paving, McDonald's consuming, private-jet owning, recyclable paper-tossing, plastic-bag-using, car-idling wastrel in these great United States of ours if it means not subjecting my son to a daily social torture that he still cannot successfully navigate.

So, I still drive him and his two brothers to school in our dusty green Honda minivan every morning, and I pick them up every afternoon. Hey, it's kind of like a little bus, right, one that transports three people to exactly the same place? And it's green, too, just not in that cool environmental way. And there's the added bonus that I have no intention of threatening any of them with imminent harm from my army of killer space robots. Well, at least not on most days.

Worth considering?

There is a piece by Ann Bauer over at Salon about the "monster" her autistic son has become. I read a few of her previous pieces, too, and am left very questioning about the entire scenario and the writer, but that's just my reaction. There are so many factors involved in her son's life, from the meds that she writes earlier "harmed" him and turned him into a psychotic maniac (but then she later blames autism), to her own strangely public threats of suicide, threats I can only assume the other literate members of her family will likely read. That entire approach strikes me as uncomfortably manipulative in some way, leaving me unable to trust what I read.

The comments are predictably divided, and some are quite helpfully analytical, especially the few that really do take a good hard look at what little data are available about autism and violence. Bottom line, there may be a slight increase in rates of violence in the adult autistic population, but...that's a nebulous measure because it could involve violence like waving your hands around wildly in fear, or violence, like trying to kill someone. Big spectrum, that. But one comment that struck me--not because of how it describes autism, by the way--was the one that asked, "Can Ann's son read?" Because Ms. Bauer repeatedly does describe her son as though she found him repulsive, not just because of his violence, but a golem or monster now that he's no longer a chubby-cheeked cherub. Can he read what she's written? He has lucid moments. He's apparently quite bright. How does it feel to know that your mother is writing these things about you?

And that leads me to some of my own ground rules for blogging. I may overstep these limits, although I try very hard not to do so. We have negative things that happen around our house--who doesn't? I could write the gritty about our lives--it's there, just like it is for other people. But I've got my rules. I try to imagine whether or not what I write would be humiliating for my sons were they to read it as adults. I do not talk about other members of my family in general, certainly not in specifics. I never explicitly discuss Mr. DMFP in any way that I feel would violate his very strong sense of privacy. In fact, I refer him to the blog if I've mentioned him at all to make sure it's OK. I'll read to TH what I've written if I have a question about how OK it is for him.

I know it's more salacious to wallow in details, to color the mood, to tell all, to drop hints about killing yourself and hoarding sleeping pills. I know that. I just read an editorial the other day in our daily paper that began with the writer describing how his alcoholic father used to beat him and how he refused to forgive his father even after receiving an abject apology. I know that kind of detail captures interest. But it also leaves me feeling like I need to avert my eyes, not learn anymore about this private, dirty laundry. I don't want to hear about how a woman had an affair with her father--and wrote a MEMOIR about it. I don't want to know that people are hoarding sleeping pills to commit suicide in spite of the fact that they have children and a spouse and these said family members apparently will learn of the intention in exactly the same way I am.

There's something about those expose-yourself memoir-type details that I find necessary to retain where I think they belong: in private (by which I mean, among family, friends, counselors--not the reading public). And not just for me. In fact, were it just me, I'd talk about that kind of stuff all day because I don't really care. But I've got four other people who are, as I've pointed out, real people. Individuals who may care. There's a fine line when you blog, one that you can cross occasionally, with prudence, especially in the name of possibly helping or supporting others in the same kind of boat (nocturnal enuresis, anyone)? But there's a whole territory of self-revelation, prurience, and the salacious that I simply have no interest in venturing into, things I don't want to know before the people who really have a right to know learn about them. That territory appears to be the capital of the Kingdom of Manipulation, and that's not I place I like to live. Because there, there be monsters.

Question: What are your blogging limitations? MamaMara...you're excluded. You're salacious details are simply to damned funny to limit.

Roving packs of neurons

Some people argue that autism is a disease. Others call it more euphemistically a developmental disorder. In the context of the range of "normal," some manifestations of autism fall in that range and thus aren't really disease or disorder, and some manifestations fall out of that range. I suppose the question at the core is whether or not these manifestations outside whatever someone has defined as "normal" qualify as disorder.

I'd say that some behaviors--self injury comes to mind--are disordered behaviors. But it also seems to me that with learning some other regulatory tactics, these disordered behaviors sometimes can be diverted. And I'd also say that people who are not considered to be disordered--you know, them neurotypical folk--engage as much in disordered, self-injurious behavior as any autistic person (or "borderline personality") might: they smoke to death, drink to death, gamble to poverty. Oh, you say, those are "addictions." Why, yes. They are. Welcome to the real world where no one is normal and everyone has some form of disordered behavior. We ALL have developmental disorders.

Yet people rarely refer to those with addictions in the piteous terms reserved for autistic people. Addicts may get frowned on, inappropriately, for their "lack of willpower." Addicts may be admired when they overcome their self-destructive addictions (which, just as with self-injury among autistics, can be channeled into less harmful but still addictive behaviors). But addicts don't get the knee-jerk "you're diseased, you're disordered, you're tragic" treatment that people who have autism or any number of the more obvious developmental disorders get. And addicts, I might add, never think of themselves as "cured" because that neuronal construction currently has no cure. Hmmmm.

I'd be hard pressed to find a human being who is not, as some level, self aware. And awareness of self means awareness of what others say about you. No one in this day and age would get away with referring coldly, clinically to a gambling addict in a news story as a tragically diseased half-person incapable of functioning without a deck of cards. Yet, stories pop up every day that refer to autistic people as tragically diseased, as exhibiting [insert "classically autistic" anti-normal behavior here]. And it's no surprise that autistic people--who happen also to be self-aware humans--find that offensive when they learn about it.

For some reason, today as I was making oatmeal, I started to ponder why it's OK to refer to cancer as tragic and something to battle--there isn't a group of cancer patients of which I'm aware who celebrate their cancerness as a badge of individualism or honor, something to cling to and not cure--but it's not OK to refer to autism as tragic or something to battle (unless, of course, you're a journalist). And I know this likely isn't an epiphany for most of you, but I'd like to point out again that I was making oatmeal, which means that at that moment, I had yet to eat breakfast.

But here it is: Considerations of a soul aside, we are our neurons. Each of us, individually, is an emergent property of the billions of neurons that make us up. They are our behavior. They are our needs, our wants, our feelings, our expression. They are Us (more correctly, We). We are They. When you call somebody who has a different neuronal arrangement from the "norm" (i.e., what you think is typical) "abnormal" or "disordered," you're not talking about something separate from them, like a cancerous tumor that can be excised. You're talking about THEM. You're calling Them "tragic." You're saying that they're "diseased." You're maligning who they are because you're maligning their neural constructs. We all are the properties that emerge from these constructs, and you cannot excise a person from them as though they were an unnecessary, dangerous growth. You cannot cure somebody of themselves.

Francis Crick famously said that humans are, at the core, "nothing but a pack of neurons." And for every one of us, that is true in the material sense. For every. Single. One. And whether some of us show it in ways that others understand or not, we are aware of it, too. Packs of self-aware neurons should never be called tragic or diseased, no matter what their constructs.

What is marriage "made" to endure?

Mawage...is what bwings us togevah...today....Wuv, twue wuv...

I recently read at a blog that will now remain nameless (oh, OK...it's the "new" Autism Vox. Yikes) that marriages weren't "made to endure" something like autism. Naturally, that raised a couple of questions in my mind. First of all, history shows that marriages have in fact endured things like war, famine, death, disability, cancer, loss, financial ruin, and decreasing sex drives. So...the obvious question that arises from this obvious fact is, "Well, is autism somehow so much worse than any of these that no marriage should possibly be asked to endure it? Or was possibly made to do so?"

And then the second question arises. Marriages obviously, as history shows, sometimes do not endure even the most minor of stresses, be they differences over the appropriate in-home temperature, differences over interior decor, or differences in the temperaments or interior lives of the minds involved. Does that mean, then, autism is classifiable as something that any marriage destined to be broken wouldn't be able to endure any better than it would a disagreement over whether or not to vacation in Paris or Provence?

Interestingly enough, the divine Wm. Shakespeare addressed both of these questions in his sonnet 116--which I've just learned, Philistine that I am, that he likely wrote to a young man of his acquaintance and who was his patron. Anyway...without further ado about nothing...

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O no! it is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wandering bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come:
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
  If this be error and upon me proved,
  I never writ, nor no man ever loved.

And I guess the crux of any discussion of what marriage was "made to endure" comes down to whether or not you think you can even measure the worth of your marriage, much less weigh it against what may come along for it to endure. But I don't think you'll find autism hanging out at the edge of doom. More likely, that's where death and war and famine (and maybe the loss of your sex drive?) take up residence. If that be error and upon me proved, I never writ, either. And we all know that ain't true.

Getting the joke?

TH reads Calvin and Hobbes and Garfield books religiously these days, which is mystifying to us because, by his own admission, they mystify him. He does not get the jokes. At all. We have sat down with him a few times and stepped through a couple of the comic strips--and imagine for yourself if you will how to try to explain why ANYTHING Garfieldian would even be presumed funny in the first place--and he still doesn't get it.

But he's trying. He watches SpongeBob Squarepants a lot--a character that reminds me in some ways of TH with his insouciance and his general good humor--and every once in awhile, he'll rush to me to explain, at some length, something that happened that was funny. And why it was funny. And do I get it? Yes, I get it. I think.

We see visual jokes out in public, and he knows they're supposed to be funny, but he always checks with us first. "Is that a joke?" "Yes, it's supposed to be a joke." "I don't get it." Then, the explanation.

It's almost like he's got to study up on the art of understanding a joke, and he knows it. He seems to be practiciing his joke-understanding skills, testing himself with every SpongeBob scene, with every t-shirt that looks like it's meant to be funny, with comic strips in the newspaper.

Back in the day, back when he was first diagnosed with Asperger's, I always thought that the assertions that Aspies might not be great at getting jokes didn't really seem to apply to TH. He always got OUR jokes, after all, and appeared capable of cracking a few himself. In fact, we assumed--rightly so--that Dubya was our literalist, the one who'd hear "laughed his head off" and really worry that someone's head was going to fall off.

And now TH is the one who's practicing, practicing, practicing.

It's having some effect. Mr. DMFP had a birthday a couple of weeks ago--hello, Mr. 41--and TH and I were at the store, selecting a group of cards intended to be from him, Dubya, Little, and me. This was like a short course in "practice understanding jokes," some of which were just God-awful, of course, but we selected a few that were HIGH-larious. Naturally, I had to explain them, but once he understood the humor, TH could barely recover.

The card from him has a little character on the front saying, "Have a happy..." and then it opens in trifold with the word "happy" repeated on it many times and then ends in the bottom corner with the little person saying, "Uhhh...forgot what I was going to say." Then, next to the little person was the word "Damn." TH loved the joke so much--one that he figured out for himself--that I let him buy the card, but pointed out the bad word to him. When he got home, he immediately crossed out the word "Damn" and wrote in "Shoot, " something he says about 5 million times a day.

Dubya's card was a standard-issue SpongeBob-is-cheerful-and-it's-your-birthday card, a perfect fit for him.

The next card has a picture of a bunch of monks in monk robes on the front and says, "The Silent Monks of the Carthusian Monastery would like to wish you a happy birthday...," and when you open it up, it is completely blank. Get it? Silent? That one was from Little.

The final card has two bees on it, each one with a word bubble over its head that says, "BOO!" On the inside, it says, "Look! I got you a card with a pair of 'Boo-Bees' on it!" That one was from me. The explanation for this one began with, "Well, sweetie, do you know how men often like to look at women's, um, breasts?" He readily agreed to this, bless his ingenuous little seven-year-old heart. And then, he got it. Like a light bulb coming on. He thought that this was soooooo funny that I had to buy it, and even as his father opened the card, TH was beet red from laughing about it. His dad thought it was pretty funny, too (I think--it's difficult to tell when someone's version of uncontrollable laughter is a subtle "Heh. Heh.") Dubya didn't get it at all and still doesn't, bless his literal little mind.

Practice, as you can see, makes perfect.

Resurfacing

1. I guess "spring break" also meant "blog break" for me. I'm writing some new posts in my head that will eventually make it into cyberspace. Just resurfacing here for some air.

2. I do not at all care for the new version of "Autism Vox," and I wish Kristina had trademarked that name so that they couldn't use it. I don't care for the writing and abundant typos, and I'm not a huge fan of the tone. Marriages weren't made to "endure" autism? Eh? More on that later. It's not a resurfacing of which I am fond.

3. I have posted a couple of guest blogger posts over at Autism.change.org focused on Circle of Friends. Please check them out. Implementing this program allowed our son's good reputation to resurface and emerge beautifully burnished and refurbished.

4. I've just now caught up on other blogs I read and have been quite entertained. I can't even remember what I used to read before I read people's regularly posted musings on life, the universe, and everything. I mean, besides the books, magazines, and newspapers I did and still read--although I'm growing increasingly concerned that "newspapers" are about to perforce drop off of that list, and I'm going to be, as Little says, "vewy sad." Requiescat en pace, Rocky Mountain News and Seattle Post-Intelligencer. A vewy sad harbinger of things to come. Resurfacing as a Web-only version somehow doesn't quite do the same thing for me. It's kind of hard to rattle around a laptop while you rant over your food about politics and the editorial page. And laptops don't fold up into quarters very well, either. How in the hell will anyone ever do another crossword puzzle once print news is dead?

5. Finally...today, we were at a park here in town that has peacocks, and two males in a disagreement suddenly took flight and swooped over our heads, making their mournful cries. Apparently, "mournful" is a fairly universal perception because Little, rather than being his usual "afwaid" and "scared," became very worried that the peacocks (or "peadicocks," as TH insists on calling them) were sad. Vewy sad. That's not to say that his fear didn't resurface and overcome his empathy once they got too close in the midst of their battle. I think that probably happens a lot, and not just among two-year-olds.

Daylight savings

First of all, I want my hour back.

Second of all, while two of my children have responded to daylight savings by remaining asleep at a time that is now their wake-up time but was once an hour before their wake-up time (got that?), the third of my children has responded to the shakeup by getting up two hours earlier and coming to get into bed with me. Where he then proceeds to fidget, wiggle, and pat me on the shoulder repeatedly. Guess who that might be? Why, yes. The eldest. The Aspie.

We tried. We started thinking "spring forward" on Friday night. We tried to maintain that tempo on Saturday, even though we were attending a little VIP read-a-thon get together, an author meet 'n' greet for TH and the other kids in the community who had won the privilege thanks to their prolific reading output and their parents' 20-cents-per-page commitment to the cause. It was at 4 pm Saturday, which was really now 5 pm, or would be on Sunday, so we were all pretty confused. Thing is, TH was little Mr. Mature at the author reading (it was a book signing, one that seemed more for selling books rather than honoring the young, outputting readers, as my ever-sage father-in-law pointed out).

Little Mr. Mature sat on the floor, right in front of the author (of course, his best friend in the world was sitting next to him). Little Mr. Mature raised his hand when they asked how many kids had read 400 pages (of course, we only paid for 200 because, well, mama ain't rich). Little Mr. Mature also raised his hand to ask the author a question during the Q&A (of course, he was going to ask her which child in the audience had read the most pages, information to which the author likely was not privy, a little social skills disconnect that would not have deterred him one bit). And little Mr. Mature also raised his hand to guess what the author does first thing when she gets up in the morning (of course, she writes; I was worried he was going to say, "Pee," which may be because that's the first thing I'd thought of, but what he really said was, "Try to remember what you were going to do?" which is likely the most accurate answer of all).

It was a success, from our perspective, in that there was hand raising, low anxiety (thanks, bestest friend ever!), efforts at responding. But then, again, second night in a row, no-longer-little-Mr.-Mature came to me at 4:30 am. Not for a bad dream. Not for any reason, really. Just 'cause. Thanks, Daylight Savings gods! Who are you people, anyway? I'm moving to Arizona.

And he was there again last night. Third day into our effort to "spring forward," and all we've got so far is a child who springs wide awake two hours earlier. Oh, that and the waking to what is suddenly freaking darkness and trying to convince a two-year-old that it really is time to get up when his body's telling him, "Just...one...more...hour." Who knows what tonight will bring. For someone who never has a clue what day it is, much less what hour of the day, TH sure does have a mixed up little clock right now.

I still want my hour back. And if anyone is willing to join a Committee on Forming a Rebellion Against Daylight Savings, please, let's talk. How many people could possibly be benefiting from the original intention of daylight savings? Really...that one extra hour for the harvest or whatever is just not coming in so handy any more. I'll turn on some lights or burn some candles and work into the wee hours of darkness if someone will just give me back my hour...and my sleep.

Is it because I have Asperger's?

We're in that phase. TH runs into a problem, and one of the first things he asks about it is, "Is that because of the Asperger's?"

Trouble with nocturnal enuresis, as the urologists like to call it? "Is that because I have Asperger's?"

Choosing not to complete an evaluation assignment even though you've just learned that it will determine your grade for that subject on the report card? "Is that because of the Asperger's?"

Thinking that today is Sunday when it's Tuesday and you've just been at school all day? "Is that the Asperger's?"

There's no teasing apart these things. Do I think his sense of time--or lack thereof--is because of different development in his brain? Yep. Do I think he has nocturnal enuresis (or, really, a nocturnal tsunami, based on what we find in the morning, padded pull-up notwithstanding) because of Asperger's? I think he has it because he sleeps like he's in a coma. Do I think he made a bad decision in choosing not to complete the evaluation assignment because he's has Asperger's? No. I think it's because he was being lazy.

And with that last, it's a bit difficult to tease the Asperger's out. I know it takes more work for TH than for other kids to organize the mental and motor effort required to write that assignment. I know that it takes a greater struggle of executive function to coordinate the writing, spelling, spacing, punctuation, creativity, word choice, storytelling, and pencil grasp all at once for the "simple" task of writing a story. And I also know that Asperger's or not, it's no excuse for not trying. I had to struggle with trigonometry in the 11th grade (I'm a math wuss). It was harder for me than for some of the other students in my class. Probably, my brain was wired differently from theirs. But I still had to do the work.

But another thing I know is that TH has no real concept of "report card" or "grade." He doesn't get the import of either, doesn't take the long view of what they might mean, couldn't really care less about any of it than he does. And he completely failed to pick up on hints from his teachers that it would behoove him, on this very special assignment, to put forth a bit more effort, the effort they know he's got in him to put forth. He just didn't get it. And I do think that missing the boat on that one was...about Asperger's.

One thing that is difficult for me to tell is whether or not TH asks if these things are about Asperger's because he (a) wants it as an excuse or (b) has an intellectual curiosity about how his Asperger's manifests. Honestly, most of the time, I think the answer is (b). He just wants the information, seeking to understand more about himself and what's driving his behaviors.

Hmmm. Do you think he's being all analytical like that because he has Asperger's?

Left brain, right brain...whole brain?

You may be familiar with this test. Take a look at this spinning woman and determine for yourself whether she's moving clockwise or anti-clockwise.


What did you come up with?


Here's what it's supposed to mean. Allegedly, if you see her spinning clockwise, you're "right brained," or using the right hemisphere at that moment. If you see her spinning anti-clockwise, you're "left brained." (The links take you to a listing from an Australian newspaper of what that's supposed to mean.)

My brain sees her spinning one way and then the other. My brain also becomes very irritated if it has to watch her doing either for very long. I don't like spinning or swinging things, either being on them or watching them, and I actually start feeling kind of nauseated if I watch her for more than a few seconds. If anyone else has this problem while reading this post, I apologize. I also can't stand those stupid mortgage advertisements with the eternally, badly dancing people and have to scroll until they're no longer in my line of vision.

So....I showed this to TH and asked him which way the woman was spinning. I think that at first, he was completely distracted by the boob factor, but he eventually responded. Here's what he said. "I see her spinning both ways."

Now that's some whole-brained, visual discrimination.