Punctuated resolution

There's a conflict in the field of evolutionary biology that I've always viewed as a false dichotomy, the battle between those who assert that evolution is a gradual process vs. those who hypothesize that it occurs in bursts punctuated by periods of relative calm. I'm in the group, if it exists, that asks, "Why not both?"

And as another year draws to a close and a new year opens, I'm also in the group that doesn't make resolutions, viewing them as a false marking point for trying self-fixit projects, a process of forcing something that happens in its own good time, sometimes gradually, sometimes in bursts, sometimes both. I can't resolve on something I'm not prepared to do just because of a Gregorian calendar dictate any more than a threatened species could suddenly evolve a life-saving adaptive strategy just because humans think it might be a good time for it.

So it is that I've seen self improvement happen only because the time was right, because the stars aligned. Take smoking, for example. I started doing that in real, dangerous, daily earnest when I was about 17. On pretty much every single new year's eve that followed until I was 31 years old, I resolved to stop. Those new year's resolutions lasted at most a few days. Why did I ultimately stop? Because I got pregnant with TH. I preceded the landmark cessation by getting absolutely ripping kneewalking drunk at a Who concert and lighting up so much that I'm pretty sure there was smoke emanating from my pores.

In other words, I had a big burst of a blow out and then...stopped. Period. Haven't had a cigarette since August 2000. And it didn't happen until I was damned good and ready for it, until the stars aligned with the Who, one exuberant night of overindulgence, beginning my third decade, and conceiving my first child. No way I coulda timed all that for a new year's eve.

And then there are the gradual changes. I couldn't have resolved to be less controlling and more patient and achieved that with the turn of a new year without being...really controlling and impatient. Nope. I had to have at least two children and some serious life lessons handed to me along with my ass over a period of a couple of years before I toned down my impatient, aggressive, mouthy, sassy attitude (yes, amazingly, it used to be worse). Not something I could have resolved to do and forced just because the calendar turned over once again.

My personal evolution has been one of punctuated bursts and periods of gradual change. No calendar could dictate the timing of these changes. Circumstance, maturity, developmental readiness...these are the real determinants of when changes occur, of how fast they happen.

It's not just me. It's all of us. TH wasn't a reader for so long, professed a hatred of it so frequently, that the Viking and I practically wrung our hands in consternation. Then, in what seemed to be an overnight burst of literacy, he became a reader. Everywhere he goes, a book goes with him. No well-timed flip of a calendar page could have determined it. It came in his own time, his own way, his own pace. Some of his other changes, such as being able to ride a bike, have come more gradually. Did they come when they were "supposed to"? Does it matter? Only if we pretend it does or adhere to a false construct that says so.

So, my resolution for this new year is no different from the one I try to make every day: to avoid building my expectations of change or measures of success around an artificial scaffold like a 12-month calendar or a public school classroom or the way it's "supposed to be." Let all things come in their own good time. You don't have a choice anyway, no matter what day it is.

A brief history of our time

When the year 2000 rolled around, I found myself in the minority, as I considered that year to be the final year of the previous decade, not the initial year of this one. And I remain in the minority, still considering 2010 rather than 2009 to be the final year of the Aughties decade. But...who's counting?

I am. Right here in this blog post. A brief history of this almost-complete decade:

2001: TH is born. Two weeks later, I receive my PhD diploma, looking like an oversized eggplant in black and purple graduation robes, still bearing much of my pregnancy weight.

2002: Dubya is born. Little baby boy blue, on his due date, at home, bless the child.

2003: I begin a tenure-track job at a state university.

2004: I leave tenure-track job for newer pastures in San Francisco.

2005: A terrible, prolonged miscarriage experience and lengthy bout with mono. The word "autism" enters our lives for the first time, although autism itself had been with us since 2001 (at least).

2006: A move back to Texas, ostensibly for another tenure track job. Job derails because they don't cough up promised post for Viking. Baby Boy Da arrives the day TH starts kindergarten. The Viking begins an excellent job in a new programming direction.

2007: No talking from Little Da, serious motor delays. Two ambulance trips to children's hospital for febrile UTI and cyanosis (and subsequent dx of bilateral reflux). OT and speech therapies ensue. I begin professorship at local private university. First signs of cervical myelopathy arise. The Viking completes his graduate degree.

2008: Social difficulties with kids at school popping up like a psychotic game of Whack-a-mole. No more bus. My class schedule can't mesh with my mom duties--I leave academia. The Viking flourishes in his career.

2009: I complete a book. We decide to move to Colorado in 2011. And we decided to homeschool our oldest child.

The world saw so much more, I know. Families worldwide experienced so much worse or so much better. But these were our annual highlights, our little two inches of ivory writ large in our eyes. Three children, two degrees, two cross-country moves, a career derailed and another redirected, about 15 surgeries all around, diagnoses big and occasionally small for almost all of us. And a decision to homeschool and yet another decision to move.

More than any decade of my life, this one has involved the big decisions, the arrival at the crossroads, the choices that obviously determine a life's course. We've been in some ways the captain of our ship, but we've also been navigating the entire time with a very blurry map.

And all along our voyage, melded into every minute of every day, thank God, there have been the blessed moments. Laughing. Lots and lots of it. Silliness. Fun. Curiosity and exploration. Growth and maturation. Love and appreciation. I can't quantify these in lists of episodic events because they came and continue to come too fast, too furious. All I can do is remember to be grateful for all that we have, which is so, so very much.

With that sense of gratitude and peace, I can truly say that I will try to keep the peaceful and loving spirit of Christmas in my heart and cling to that spirit throughout the year. Because those intangibles are the truest, deepest meaning of this life of ours, in the moment, right now. That's all that matters. The rest is simply history.

Oh, brother

I've just had two therapists suggest to me that Dubya be evaluated for autism. He's seven.

The idea is not new. He doesn't make eye contact well (says it hurts him). He's got a history "unusual" interests (ancient Egypt when he was 4 comes to mind). He is very sensory defensive. His OCD manifests in several ways, one of which is the perfect arrangement of tiny things just-so, and if someone (i.e., a brother) disrupts the arrangement, a small volcanic explosion is the result. He uses odd prosody and is very difficult to understand sometimes. His voice is typically a low, flat monotone, regardless of whether he's telling what he thinks might be a joke or expressing one of his deepest fears. He cannot articulate emotion, and his facial affect can be impenetrable even though we know that underneath, the waters rage. He is also our most concrete thinker, the child who, if you refer to someone's having lost their mind, will seriously be wondering how someone's mind could fall out of their head.

The reasons we've thought "no" to this idea are twofold. First, with TH, from a very early age, there was a certain effect on other children. Within seconds of an encounter with TH, the other child would typically eye him warily and then either decamp rapidly or back away slowly, watchfully. Second, also with TH, there are the obvious physical manifestations of ASD--hypermobility, serious motor delays, hypotonia (especially in the trunk), a distinct lopsidedness between right and left. Then, TH also does the self-reg behaviors, including flapping, vocalization, and facial distortions. Dubya, at most, likes to withdraw his hands into his sleeves and flap his sleeves. His motor skills are OK...a little below average here, at level there, nothing to write home about.

He's been referred to a psychiatrist for evaluation, not only for ASD but also for whether or not he needs some pharmaceutical intervention. It seems time, to me, for that. His perseverations on his fears, his anxieties, his shames, interfere with his ability to function. Something more must be done.

But ASD? Dunno. Even if they came back with what I think would be the likeliest diagnosis, PDD-NOS (there is undoubtedly something pervasive there), what would we do with that? Add him into our autism category and...then what? He's OK at school. He's got one friend, a boy who tolerates his incessant invasions of body space. I don't encounter kids lining up to complain about him when I walk into the classroom, something that invariably happened whenever I volunteered in TH's class. He has daylong issues with his hyperactivity and impulse control, but so far, his teacher's managing it.

So what good would a diagnosis--if there even is one--do? Right now, I can't see that it would make any difference for him. And regardless of what his "label" is, he's still got the things that interfere most with his life and, on occasion, our patience: tics, hyperactivity, mercuriality, OCD, and anxiety.

Is there a dx that simply says, "Boy's got some serious issues"?

In honor of the breast

If you're of a sensitive, prudish nature, you should probably stop reading now. In fact, you probably shouldn't have read the title of this post. Onward.

I'm the only person in my home who has breasts. Earlier in our lives together, only one other person was aware of this difference. However, I now reside with four people who have clearly become aware that one of us has...something there...while four of us do not and likely never will, given their universal tendency to ectomorphism and the Viking's lack of mannaries.

The realization that Mom has something that they don't has come in various ways. TH figured it out because I used them to feed his younger brother, Dubya. TH learned pretty early on that "brefs," as he called them and still does, are for milk. Presumably, he'll later learn that they may have other uses and attractions.

Little is a more hands-on fellow. Not having the benefit of a younger brother and not having been able to breastfeed himself, he's less aware of the functionality of the breast. He does, however, have an appreciation for some of their other features. At his first moment of discovery, he began by pushing on my left breast with his left hand and then joining in on the right with his right hand, asking, "What are these?" "They're breasts," I answered. "They're like pillows!" he determined, pleased to think that his mother, so far meeting most of his expectations, came fully equipped with pillows, too.

Then there's Dubya. Oh, Dubya. He's the only one, I think, who gets that "pillows" might hold a bit of attraction in another sense. We've discussed it because of his expressed revulsion for women in bikinis. "Lots of men really like to look at women in bikinis," I asserted, mentally excluding some men who might, say, not be "breast men" or perhaps are gay. He demurred.

But that doesn't mean he's not thinking about it. This week at school, Dubya learned about Diwali, the Hindu festival of lights. He was, of course, freaked about about the four-armed goddess and the blue skinned god because everything freaks him out. But they also learned a little bit about Indian attire, and he came home most concerned about the sari. Obsessed with it, really, and I couldn't figure out why until he said yesterday on the way to school, "Do women who wear those saris, do they, um, wear, you know, underpants and those other things, what are they? The things women wear on their boobies? Do they have those on under them?"

I've never looked and I've never asked, but I assumed it and responded, "You mean bras? Yes, I think so." Dubya, being the Puritanical child that he is, was immensely relieved, obviously feeling that "boobies" (where on earth did he learn that word?) must be appropriately restrained. He may someday change his mind about that.

Meanwhile, my pillows and I will continue on, the sole representatives of all that is woman in our home. Yikes.

Hedgehog in the fog

There's a famous essay that divvies up writers and philosophers into foxes or hedgehogs. I think I'm probably a fox when it comes to that kind of classification, but I've updated myself thanks to Google Chrome and am now daily reminded that I'm a hedgehog. My Google Chrome wallpaper is "Hedgehog in the Fog," a character from a Russian film that I think describes me fairly aptly: A prickly thing, trying to see my way by the small light I have to guide me.

I love Chrome. I think I love it most because it's not Internet Explorer and because Firefox started crashing every time I opened it. I love things that hum along, that work like they should, that do what they're supposed to do when they're supposed to do it. That's the way things oughta be. I tell this to people all the time, especially people at places like Time Warner Cable, AT&T, my local grocery store, and so on. I guess, in a way, I am really a hedgehog, having distilled my entire philosophy down to a single credo (with apologies to Goethe): Let everyone do their damned jobs right, and the whole world will work smoothly.

And now I've picked up a new job. I've always been a teacher. Even when I was about six and discovered that the neighbor boy couldn't read and tried to teach him, I've always been a teacher. Last year, in April, I ceased being an official, paid teacher, leaving my position at a university because the class hours just couldn't fit with what I needed to do as a mother.

As of 11 a.m. today, I'm officially back to teaching. I've got a little hedgehog or fox, age 8, to form and shape and instruct. Daily. I'm looking forward to it. He thinks he's looking forward to it, although I keep trying to tell him what a tough little hedgehog his mother really is as an educator.

Where will it all end? I don't know because I'm just the hedgehog in the fog with a tiny light that lets me see only what's in front of my face. I can't see the forest or the trees. I can only see what we need to do right now. Will he ultimately be a fox, bringing together strands of what he imbibes from these teachings to formulate a gestalt view of the world? Or will he be a hedgehog, viewing the world through the sole prism of his mother's voice as his teacher?

Either way, I hope that as we work our way through this new, foggy world we've just entered, we both do our damned jobs right.

In restless walks, I prowl the night

People have far worse days. No doubt. It's all minor stuff. But it leaves me pacing my neighborhood after dark like a black-clad, malevolent spirit casting spells of the trickster variety on all the Lexus-driving, cut-you-off-and-tailgate-you, reconstructed, dyed, whale-fat-plastered folks who seem, somehow, drawn to me like I'm a magnet and they're the helplessly orienting shreds of iron attacking me en masse.

In other words, I really like walking around in the cold darkness in such moods as this, contemplating medieval revenge on self-entitled jerks.

Now, if I can only get on the phone with a supervisor of the bus drivers and tell him all about how one of his drivers almost crushed my car today as he (1) ran a stop sign, (2) cut me off when I had the right-of-way, (3) gesticulated rudely at me while driving a bus full of children, and (4) almost ran my car off the road, I'll feel even better.

And, tomorrow at 11 a.m., when I officially withdraw my oldest child from school, when I no longer have to hear daily stories of girls who say they hate him, girls who tell him to shut up because he's talking to himself, girls who refuse to work with him in class...oh, hell, any stories about girls, period...I might actually be able to relax just a tiny, teensy bit for these eight days leading up to the putative anniversary of the birth of our Savior (well, some people's savior) and really focus on the fact that this is supposed to be a festive season.

Instead of a season that feels in some ways like one failure or frustration or f*** you after another.

The autistic child at your school

In the aftermath--what will likely be an ongoing aftermath--of our latest situation with TH, the playground, and his school, I've found myself building a list in my head. Given that, a lot like my middle child, things that enter my head must find a way out, I've decided to produce that list here.

A Few Things to Know about the Autistic Child at Your School

--An autistic child can often be"low arousal" in certain ways. That means that even a brutal and ill-intended pummeling may not elicit a visible or detectable response. Never assume that such behavior is being taken in good part just because the autistic child isn't crying or complaining about it.

--An autistic child may not tell an adult about physical and emotional bullying unless they are very close to and comfortable with that adult.

--An autistic child may not respond to repeated insults until some unclear breaking point is reached. The autistic child may then respond. Just because the autistic child made no previous mention of the bullying doesn't somehow make the bullying OK or negate the fact that the child's response was provoked.

--An autistic child may not express the emotion you expect. An autistic child in great pain--emotional or physical--may smile or even laugh right through it. I can assure you that the laughter does not mean the autistic child is actually having a good time.

--An autistic child does not express himself or herself the way a neurotypical child or adult might. Try not to judge an autistic child's facial or emotional expressions through a neurotypical filter or from a neurotypical viewpoint. You'll never have the correct understanding of the autistic child if you do.

--An autistic child may look like s/he is having a great time. If that child is, however, in the midst of a scrum of running, pushing, verbally sparring children, that child likely has no idea what is really going on. And that child is also likely a target of under-the-radar bullying that you'll never hear about.

--An autistic child in an unstructured, chaotic social situation is a child who is likely completely at sea and who is likely the target of bullying, both subtle and overt, both physical and emotional. Don't ever lapse into thinking otherwise.

--An autistic child in the midst of more than a couple of neurotypical peers in an unstructured situation is never fully armed, never as completely socially able, never truly interacting on a level playing field as the neurotypical peers. Never.

To assume otherwise is not to understand the autistic child.

Ode to a Viking

The Viking is not known for showing his emotion. In fact, he's better known for not showing much emotion. For those of us who know him, we recognize the deep well that is there, but we also know that one of his greatest outer expressions of what's going on inside is his choice of music. It's telling, it's prescient, it's expressive of him.

For each of our children, at their births, the Viking has made a mixed CD tailored to that child with songs selected from the Viking's favorite musical artists. Yes, he essentially makes the equivalent of mixed tapes for his children. It started with TH, and we now have three CDs he's burned (and, in some cases, reburned after too much use) with a set of songs just for each of our sons. Given who he is, he didn't make one for me until I requested it. And when I listen to it, it reduces me to tears every single time because I know that when I hear Sade's "By Your Side" and "Haunted," a duet between Shane MacGowan and Sinead O'Connor, I know I'm hearing the deepest expressions of my husband's feelings courtesy of a mixed CD.

Songs for TH begins with Lyle Lovett's "If I Had a Boat." Yes, he kicks it off with a song that says, "Kiss my ass, I bought a boat, I'm going out to sea." As I listened to it yesterday following our meeting with the principal at our son's school, I wondered: How did he know?

The second song? Tom Petty's "Wildflowers." You belong among the wildflowers, you belong on a boat out at sea...you belong somewhere you'll feel free.

Again. How did he know, eight years ago, before we'd even gotten used to changing a diaper, that these songs were our son?

Still waters running deep indeed. The playlist unfolds with some Van Morrison, Jimi Hendrix, Pretenders, Byrds (the river flows, it flows to the sea...). Echoes throughout of flowers and the sea and wildness and all the things that form the unique overgrown nature sprite that is our son. It begins its close with Bob Dylan, "Every Grain of Sand." The Viking's foresight, his insight, astonish me. He had an awareness of what it was like to be a parent, a parent to TH before I had even recovered from the fact that TH was now here.

And it was with the deepest pride and respect yesterday that I watched the Viking sit there in our unhelpful meeting with the principal, watched him calmly but firmly ask again and again the questions we wanted answered. He was insistent without being belligerent. He was articulate without being glib. He was quietly passionate without rage or fury. He was a father. He was a man. And as I sat there almost unable to remain in my seat at what I was hearing from the principal, the Viking, after 18 years, simply did it again. Every time I think it's not possible, I find another way to love and respect him more.

One of the songs near the end of Songs for TH is from Richard Thompson. It's an interesting song choice for an infant, but it's also yet another expression of the Viking's powerful emotions. But this time, he's presciently co-opted my own emotions, especially after a week like this one in which I feel, possibly irrationally, that our community let us down, that the hope we'd had of starting our son from kindergarten with this group would help them know him, maybe even like him, at least tolerate him was a false hope premised on some aspect of humanity that doesn't exist. And because of this week and this welling of feelings, I'm more grateful than ever to have the Viking. After 18 years, after many ups and downs, after a week like this one, there's no one I need more at the dimming of the day.

We have decided to homeschool

Since TH was in kindergarten, he's had a nemesis. Ironically, it was the very first person he met at his school, as we had just moved into the district. Idiots that we were, we thought she seemed pretty nice and encouraged TH to engage with her. Of course, he didn't. Or, at least, he didn't do it the "right" way.

Two weeks into the kindergarten year, we learned that a parent had contacted the teacher, complaining about our son, claiming he'd made "death threats" against her son. Turns out, her son and this girl we'd met that first day together had teamed up against TH and had (and I'm not making this up) threatened to cut his head off and throw it in the trash. TH had parrotted this back to them, and that's the part that the boy had told his mother, conveniently skipping over the rest.

That, as many of you know, is the classic scenario. Low-arousal autistic kid finally gets fed up enough with bullying to respond or retaliate, and low-arousal autistic kid is the one who gets in trouble because he hasn't previously exhibited any signs of distress or called attention to the events that precipitated his actions. Classic.

We've watched that happen ourselves over the years, watched TH be attacked or taunted, watched it build to the point that even he had to respond, and then watched an adult who was supposed to be watching the whole time suddenly check in and punish TH. And we know that it's happened at school repeatedly over the years.

Another thing that is a repeat pattern for us is the school's response. We've had five or six paroxysms of stress and deep emotional pain over his 3.5 years at this school thanks to a buildup of taunting and bullying of our son during unstructured situations that eventually peaks in that oh-so-ironic outcome of another parent complaining about him when it was their child who instigated. It's been boys. It's been girls. It's like he walks around with an enormous target sign on his forehead, or a t-shirt that reads, "Hey, come bully me because I probably won't do a single effective thing to stop you." As in, he never complains to a teacher, never cries, never shows distress that an adult could register. Or at least, an adult who doesn't know him well enough could register.

We've had our last paroxysm. We've had it. For the last several weeks, things have escalated yet again on the playground. We've made it clear and the school has clearly indicated that they understand that our son isn't at his best in unstructured situations. That he is most susceptible to being targeted and most helpless to respond with appropriate defense in these situations. The school, with each paroxysm, has girded its loins, buckled on some do-the-right-thing armor, and done right by our son. Last year, after one of our biggest spasms, they set up such a structured situation that the rest of the year went so smoothly, we were all deceived into thinking that now, Everything Was OK.

It wasn't. The do-the-right-thing armor gets rusty, loins ungird, vigilance slips, it all starts up again. Kids say many ugly things to him, daily. They want him to die. They want him to go to hell. They hate him. He's ugly. He stinks. They "don't like autistic people." He's a bully (Oh. My. God). It's still Lord of the Flies out there, and my son is still Piggy.

One of the constants through all of this has been that little girl we met first back in kindergarten. She's a persistent little bully, having consistently targeted our son at every available opportunity, from the school bus to the cafeteria to the playground to chance encounters in the hall. And she doesn't stick only to words. She kicks. She punches. And, she uses her fingernails.

The school has, for years, been well aware of this situation with this particular child and has promised to keep her away from TH. Yet, for the last several weeks, as I know from his daily after-school reports, she's been in the picture. I've listened to what he's said. I've thought carefully about whether or not I should call the school and complain or see if TH is at a point where he can work these things out for himself. I do not want to be a helicopter parent, having the Powers That Be monitor my son's every minute of the day.

And because I was too cautious, we ended up with this set of injuries. Because the school dropped the ball on a situation of which it has been aware for years, we have this set of injuries. And because we are sick of the emotional and physical and mental shocks that each of these paroxysms brings on, we have decided to withdraw our son from the school. We have decided to homeschool.

Many of you commented on my most recent post showing this set of injuries to my son's face, one of which I believe will become a permanent scar. You've suggested lawsuits, calling the police, calling the parents. I'm not a litigious person--I've got a graduate school experience to demonstrate that I don't sue people even when I'd be completely justified in doing so and probably walk away with a nice little packet of Benjamins. And some of you have asked how the school has responded. Here's how.

I sent that picture to one of our son's teachers, his favorite and the one who apparently saw and asked about the facial injury. I also sent it to his behavior teacher, who's worked with him for his entire career at this school and who is most aware of this situation with this particular girl. And I sent it to the principal, thinking he might want to know about what children at his school are doing on the playground. Again. I add that the day of the injury, no adult contacted me about it. No adult treated the open abrasion that the fingernails of another person had produced on my son's face and neck. I'm pretty sure there are standard operating procedures in place for such things. If there are, they weren't followed. If there aren't, there should be.

The teacher emailed me back that night. The behavior teacher emailed me several times the next day and called me. The principal? Radio silence. Not. A. Word.

I learned from a parent that a mother who went ballistic about our son's calling her son the boy's name with the word "pooh" at the end threatened to sue and that this somehow got the attention of the school authorities and led to action of some kind. (I also learned that this mother mocked our Circle of Friends effort and gleefully announced that she certainly wouldn't be signing on for that and was pleased to note at least one other parent who wouldn't be doing it. We're a ever-widening circle of Christ around here, we are).

In spite of my fiery Irish temper, I'm actually a pretty deliberative, thinking person, as my overcautious response to this most recent buildup indicates. I don't act now at the age of 41 without thinking things through very carefully first. And I have to say, for the first time in my life, I'm deliberating very carefully and thinking through a certain thing that is usually not in my nature.

Meanwhile, we're withdrawing our son from school, and he will begin his homeschool career here, with his heartbroken mother who had hoped for better from this society in which we live. Foolish, foolish hope.

When girls attack

TH has been on the receiving end of almost daily physical attacks from girls on the playground, one little girl in particular, who's pretty much been out to get him since kindergarten. Today, she literally drew blood.

We're considering our options.

News media: A changing tack

There are two pieces out today, one on MSNBC and the other via Newsweek, that indicate the clear change in direction that the news media are taking when it comes to autism and to vaccines.

The MSNBC piece addresses new programs that have sprung up in Denmark and in the United States for helping autistic people find appropriate employment. What I like about this piece is that it quotes autistic people actually, like, talking and stuff. Using language, you know? Talking about their jobs, their lives, their desires. And I like the professor from Denmark who says that "redefining conditions like autism as differences, rather than disabilities, is important for a developed economy." What I didn't like is that it honestly states that autism is "sometimes seen as a heartbreaking diagnosis." It's not that I don't accept the reality of that or the reality of a parent's heartbreak--I do, and I saw it in my own husband. But I hope that programs like these that recognize the potential of autistic people help ameliorate some of that initial heartbreak for parents in the future who learn that their child has autism.

And then there's this almost scathing indictment of the first-world luxury of bitching about vaccines, courtesy of Newsweek. Really. They're pulling no punches in those first grafs. I'm all for insisting on the best medicine, the least-dangerous medicine, where possible. But I've often thought of this vaccine movement as a luxury of people who have honestly never experienced the pain or hardship of the diseases against which we vaccinate, the millions of deaths among children that still occur worldwide from these very diseases. But this Newsweek piece lays it all out. Bluntly. I'm sure the comments are a treat.

The authors describe quite a number of studies and other findings related to the outcomes of vaccinating vs. not vaccinating and also detail some of the building consequences for the broader community when people choose not to vaccinate. And there's some information in there that I'd never heard, such as the finding that having the flu while pregnant raises the chances your child will develop schizophrenia. Not such good news to me, as I had a severe case of the flu while pregnant with Dubya. Very, very severe. I'm not going to sit around worrying about that--the troubles of the day are sufficient--but still...yikes.

The Newsweek piece states that

In the wealthy world, where individuals have the luxury of demanding 100 percent safety, the balance between individual and population rights has shifted so far toward individualism that it is nearly impossible for public-health authorities to persuade people to accept even one in 1 billion risks on behalf of society as a whole.

So, on the one hand, we have a handful of people working to help autistic adults find satisfying employment that allows them to use their talents and reach their potential. And on the other, we have overweening individualism, irrational skepticism, and dressed-up Warrior Momism in a small group of people perfectly willing to indulge in their individual selfishness to the endangerment of the many. A study in contrasts, indeed.

But I do appreciate this changing tack, this shift in the wind (can I find any other nautical metaphors?) on the part of the news media. I'm relieved to see a sturdier stance in reality on all sides. My hope is that this weight will eventually crush the nonsense to atoms, and we'll have a society that's safer when it comes to infectious disease and a society that sees the potential in all people and opens the way for them to reach it. Is that hoping too much?

Perfect?

We've heard a lot of things about TH over the years. Some teachers and therapists have told us they think he's smart. Some people have told us--either directly or indirectly--that they think he's a bully. He's possibly one of those, in some ways, and not at all one of those in any way. I know he's not perfect, however. I love him for who he is, I don't feel anger over his lot in life as an autistic person, but I know--very very well--that he, like the rest of us, ain't perfect.

But for many years, since he suddenly burst into a song from The Lion King in a pitch-perfect imitation of Simba singing, "Going to be a mighty king...", I've noticed that he has perfect pitch. Not everyone does. I've repeatedly read in different media outlets about how "American Idol" contestants often hear that they are "pitchy." But TH's voice is clear as a bell, pitched perfectly.

With the exception of a couple of family members, I've not mentioned this to anyone. But I have had TH and Dubya participate in an excruciating experience known as the Christmas Children's Choir for our church. We did it last year, and it was so painful for Dubya that I thought he might actually go into cardiac arrest from the anxiety. TH, after a bumpy start also attributable to our key family trait of anxiety, rolled with it pretty well. We consider this our gift to their grandmother, the Viking's mom, who attends our church with us on Christmas Eve and takes enormous delight in seeing her grandsons do something involving "talent."

So, we signed 'em up again this year. Why do I have my children do this? Well, I view it as our job as parents to build character, equip our children with certain essential tools. And there's hardly a career in life--besides perhaps working a cash register--that doesn't involve public speaking at some point or another. Whether it's in school, college, graduate school, or the job environment, you're gonna find yourself standing in front of a group of people, talking. Performing. And I've known plenty of people who are so petrified at the prospect that they've contorted their educations and careers around it, limiting themselves from advancing. I want my children to at least know that doing things in front of an audience does not lead to instantaneous syncope or death or even much in the way of lasting public humiliation.

By performing two little Christmas songs in the children's choir on Christmas Eve, by attending weekly practices for about six weeks for an hour each Sunday, by listening to the songs in the car and singing along, by standing and sitting at the right times with the group, my children learn any number of valuable lessons. Standing up and performing in front of people doesn't kill you (last year's fears about Dubya's heart notwithstanding). Practice is worthwhile. Doing something well or trying to do something well is worthwhile. Doing something for someone else--like working a little to give their grandmother 10 minutes of pleasure in song--is a wonderful gift to give.

This year, they're learning these lessons pretty well. Dubya's far more relaxed, although still tense. TH, apparently, has emerged as a bit of a star, warbling away in his impossibly loud voice, probably using what he considers to be his "opera" singing (parents aren't there for the practices, so I don't really know). And this last Sunday, as I came to pick up the boys, the choir teacher--a music teacher in her day job who herself has a lovely, perfectly pitched voice--said to me, "TH is a star! He's really got something! You should start him on piano lessons!"

We had tried that, I told her, and planned to try again when we seemed a tad more developmentally ready for diligent application. "He needs to do it," she urged. "He's really got something there. He's got perfect pitch." I almost fainted away right there in the narthex. Talk about instantaneous syncope. Someone just used the word "perfect" about my oldest son.

And for once, I agree. He remains the most completely imperfectly perfect TH a person can be. But when it comes to that ear, that voice, my child is, indeed, simply perfect.

Real science: Copy number variation and autism

I've posted around on different blogs about copy number variation and have edited a few papers recently about the same concept as potentially underlying autism. And now, there's a new report out that copy number variation (CNV for those of us who get tired of typing that) in neural growth genes may have a strong and inverse role in autism and schizophrenia, respectively.

What is CNV? Well, you've got a lot of DNA in each nucleus of your cells. It's packaged pretty tidily, wrapped around proteins like a spool of thread and then bundled up into those little packets we call chromosomes. Some parts of a string of DNA provide a code that the cell uses to build proteins, while other parts of the DNA are what we used to call "junk" because they weren't code for anything, but we don't think of it that way any more.

Nature builds the "string" using only four different kinds of molecules, or building blocks: A, G, C, and T. Through millennia and various accidents, sometimes this series of blocks in a segment of the string can be deleted or duplicated (doubling from, say, AGCTCCGC to AGCTCCGCAGCTCCGC). Sometimes, they can be duplicated many times over. If the duplication is of regions that hold the code for a protein (i.e., a gene), then the number of copies of that gene now varies from the usual number of copies present in the organism, and it is officially a CNV. ETA: The upshot of having more or fewer copies of the gene is that the organism may end up with more or less protein that the gene encodes.

Does it hurt the organism for these duplications to happen? Depends on what they affect. While you could probably glide through life just fine with a duplicated finger, a duplicated head might present a bit of a problem, and DNA has similarly influential and not-so-influential areas. We've already linked a few disorders to sequence duplications. Huntington's traces to having a certain number of triplet repeats of the DNA alphabet in a gene. While these might be totally innocuous somewhere else, if these CAG-CAG-CAG repeats occur in great enough numbers in the sensitive areas, the result can be disease.

Now, we've got CNVs to consider. I love this idea and strongly think it's a research avenue very much worth pursuing. In the study reported today, having a duplication can be associated with autism, while having a deletion can be associated with schizophrenia. Researchers feel that this relationship of over-presence vs. absence reflects specifically the perception of autism as resulting from neuronal overexpression and of schizophrenia arising from an underexpression. They even go so far as to point out that autistic people often have larger heads while people with schizophrenia trend to smaller head sizes, again something that intuition, at least, would say is related to brain growth.

Why do I love this research path so (outside of the fact that the PI on the study, Bernard Crespi, also studies walking sticks)? These researchers have identified four regions of the genome in which CNV was strongly associated with either autism (duplications) or schizophrenia (deletions). Four. In a disorder of triplet repeats like Huntington's, families can carry what are called premutations through generations, not having quite enough of the repeats to manifest disease. But a duplication of that repeat area in a single generation through a copying accident (they happen ALL the time) can push that over the edge and cause disease. And the more repeats, the earlier the onset of disease.

In other words, with a variation in repeats, there is a disease spectrum. If we have four areas of interest with different numbers of duplications, I would hypothesize that we'd have gradations of effects, a spectrum of manifestations related to whether all or some of those regions are affected, to how many duplications of each region exist (e.g., 4^many possible combinations). With deletions, the spectrum would be considerably more narrow, 4^4 combinations only, reflecting the relative narrowness of schizophrenia phenotypes. With this construct of CNVs, we'd have the wide variation of phenotypes we see with autism and the narrower variation with schizophrenia.

It's not The Answer. It's not The Be All and End All. But...it sure is intriguing. Now, if we could just get people to pay attention to real scientific findings like these, supported by considerable research already pointing to CNVs as relevant...we'd really be making some progress.