A life less ordinary?

The secret's out

2009-11-09T12:00:00.003-06:00

TH came to me last night and asked, "Is my mouth bleeding?"

Indeed, it was. All over everything. Dubya, it seems, in a moment of late-evening exuberance, had executed a gymnastic maneuver on the lower bunk of their bed, landing with his butt right about TH's chin. TH happened to be holding his DS about 10 inches above said chin. DS slammed straight into mouth and literally sliced off a crescent-shaped piece of TH's gum over his right incisor. Sorry. I know that was gross to read.

Most kids would probably have screamed, either from pain or anger or surprise or all three. TH? Got up, came downstairs, and asked me that question, calmly, even as blood pretty much poured from his mouth. "Did that hurt?" I asked. "No," he said. "Does it hurt now?" I persisted. "No," he said. "I didn't feel anything." But the blood kept coming.

A sterilized pair of scissors, some ice in a clean rag, and a bit of rinsing later (I threw away the gum slice), we sat in the home office and chatted, at his request. It's the fourth night in a row of such requests. I posted recently that when TH does this, among other signs, there's something going on. Something that will emerge with time, usually during one of these chats.

Some of it emerged a couple of nights ago, secrets so secret that I won't be revealing them here. But last night's information was more of a universally common experience for some children, especially some on the spectrum, so I'm sharing them. I also do so with the firm and unshakeable knowledge that not one of the things quoted below (except possibly the first one, but we all are) is true.

Children at school--not all, certainly, but a damned good-sized cooperative of them--say the following things to TH, usually in those unstructured, adult-distant situations of school, like recess, at the water fountain, in the after-school car line:

"You're weird."

"I hate you."

"You stink."

"You're disgusting."

"You're gross."

"You're ugly."

After informing me about this, with a completely flat affect, bloodied rag to his lip, TH went on to say that he figures that when it comes to popularity, his BFF is somewhere near the top of the list, while he, TH, is somewhere near the bottom. I think he got this idea of a ranking system from Diary of a Wimpy Kid.

"Does that make you feel bad when they say things like that to you?" I asked him.

"No." Flat affect. The only thing I can detect that lets me know that answer is more equivocal than it sounds is that his eyes move around a bit more.

"It doesn't bother you? What do you feel when they do that?"

"Nothing."

There were no springing tears when he said that, no watery eyes, no readily apparent efforts to suppress emotion. But I know my son. I saw those eyes get on the move with each denial. And I know what the last week has been like as he tried to regulate and process and effervesce away all of the feelings that these experiences unlock for him. And even though he claims to have felt nothing, just as he did about his mouth wound, I know that inside, his psyche is bleeding all over the place. Whose wouldn't be?

Sugar bombs

2009-11-08T14:17:00.004-06:00

I know that "studies indicate" that sugar doesn't affect a child's behavior (they're obviously not including my children in these studies, and probably not yours, either). Regardless of what those folks find, we've seen clearly that sugar--of the refined or high-fructose corn syrup variety--sets off sugar bombs in our household that release so much energy, I fully expect to see only three tiny dense white dwarves left behind once it's over.

Oh, you're thinking critically. You idiot of a DMFP. Why are you feeding your children sugar? And I respond to that, It's not me. It's Grandma. Not the Grandma who raised me, who wouldn't let sugar come near us, fed us yeast and lecithin by the spoonful, stuffed us with probably near-deadly amounts of vitamin A, and used carob instead of chocolate (reinforcing the adage, which I think I just made up, that when it comes to chocolate, there is no substitute). Nope. This would be Grandma-in-law (to me), the one who bought Pop Tarts and sugar bomb cereals for her kids and who still cooks meals the old-fashioned way that everyone secretly likes but that no one is allowed to use today and still hold up their heads as Good Mothers. Of course, I'm the one with all the health problems, while Mr. DMFP (a.k.a. The Viking) remains in startlingly fine condition given our advancing years. Must be all those Pop Tarts.

So they spent yesterday afternoon with Grandma Sugar. And when they got home, we could...tell. The damage, per the two older kids? About six lemonades. A fudgesicle. Chocolate chip cookies. And, according to TH, "about 10 soda crackers." Sigh. I'm not making it up when I say that last night, Dubya literally but accidentally ripped a towel rack out of the bathroom wall. He was hanging on it. Pretending to be a monkey.

Thus, it came as no surprise that well before dawn this morning, Little came to me, waking me from a weird dream involving a move from our house with the world's largest moving van. Such a lovely dream. I hope we were moving to Colorado. "My stomach hurts," he complained. Of course, that had me hustling him toward the toilet before my eyes opened, sure that hurling was going to follow close on the heels of that last syllable.

But no. He just needed to "potty." Way off schedule. I won't get into the details (you're welcome), but let's just say he was sugar 'flicted for much of the early morning. The thing is, when Little gets on a sugar high, he's hysterical. If you combine sugar and chocolate, you get a three-year-old with a bad case of the hiccups, drunkenly belting out the parts of Yellow Submarine that make sense to him: "We all...HIC!...live in a...HIC...yewwow submawine, yewwow submawine," followed by a quick interjection of, "HIC!..I am the walwus! Coocoocachoo! HIC!" We've been listening to the remastered Beatles a lot lately. Can you tell?

Funny as that is, we don't care for the effects of sugar or sugar+chocolate on our children and limit both. No matter what the experts say about it, the effects are obvious. I know sugar makes me feel like crap, and it turns my children into almost unrecognizable rumpusing chimpanzees. What is your experience with it?

Sigh. R-word still OK if "modern slang"

2009-11-06T17:55:00.008-06:00

There is a blog called...get ready...Retarded in Love. (link has been removed). It's written by a very very young person who thinks she can order her life Just. So. She's got a to-do list that includes getting pregnant on schedule and having, presumably, perfect and lovely healthy children. Dust off hands. All done.

Some of you may be aware that a few of us contacted the blog's author, Michelle, about the title of her blog. Here is what I commented to her:

It would be thoughtful of you to change the title of your blog...yes, this probably comes across as uptight oldness or just plain uptight, but people who actually are labeled as retarded cannot defend themselves when someone uses this term for amusement. While the word itself should not be used as a label, it is still, and we all know exactly what it means. It's painful to people who love someone who is intellectually disabled to see a word like this used for humor by someone who is patently not intellectually disabled. If you must use a term that refers to cognitive deficiency as a result of being overwhelmed by love or made a fool of by love, I suggest "Stupid, " as in "Stupid in Love." God knows that's enough of a norm to avoid being offensive.

I thought that was pretty damned diplo-freaking-matic of me given that what I really wanted to say was, You stupid little young person, get that offensive word out of the name of your blog. It's an idiotic blog title anyway. (Yes, this coming from someone who has "daisymayfattypants" as her URL. Hey, it's my dog. And who's going to be offended by that?).

Ah...callow youth. Here is the self-assured young woman's response:

I realize my blog has come up as a topic on Twitter. I am going to give you the same response I just gave to my last e-mailer.

As long as I've had my blog, I'm sure you know you're not the first person to e-mail me something along these lines.

In my previous experience in debates with others, it comes down to this: agree to disagree. Here's why.

I am not calling any person retarded. In fact, if anything, I am only calling myself retarded. I am not even calling an animal, object, or idea retarded. I am using the word "retarded" in the way of modern slang, without directing it at anyone with the intention of harming feelings. So, the way I see it, it's just others choosing to be offended by my title - it is not being offered that way.

There are plenty of "normal" blog titles I could choose to be offended by, but I choose not to be so sensitive. It's really up to my visitors how far they want to take the meaning behind my title - and if they don't like it, they certainly don't have to come back, or support my blog in any way.

She's decided that this is an "agree to disagree" situation. She chooses "not to be so sensitive." I guess that's pretty easy for her given that she's presumably *not* someone who's actually been labeled as retarded.

Well, I don't agree to that. She defends the word "retarded" as "modern slang." Ah, the old "modern slang" excuse. She probably thinks that's novel, that no one's ever pulled that old chestnut out of their pockets before. I'm pretty sure that the n-word gets that defense, too, but you know what? It's not acceptable to use in a blog name, and it's still damned offensive. Without equivocation, she's in a completely indefensible position, modern slang or not. Hilariously, she thinks that a word that has been in use in this very context (i.e., "retarded in love") is "modern" slang...not realizing, evidently, that even really old people in their 40s like me grew up hearing it used in exactly this way.

So, nope. I don't agree to disagree. I continue to disagree. I urge anyone else who feels the same to do the same.

Oh, and Michelle, you infant, you child, if you read this, good luck with that to-do list. Life evidently has quite a few lessons to teach you. If you're blessed with a special needs child, perhaps you'll gain a better understanding, and--dare I say it--sensitivity about the "modern slang" you choose to toss around so casually.

Autism moms: Are you girly-girls?

2009-11-06T10:52:00.006-06:00

I have a reason for asking this question. For several years, I posted on a community message board using a gender-neutral handle. I didn't do it on purpose...it was just the handle I chose. Most women who posted on that site did use handles that indicated their sex, with terms like "babe" or "girl" or "Mrs" or the occasional "Ms" in them. And for a long time--in fact, until I myself revealed my sex--people assumed that I was male. They never figured out based on what I wrote or the way I wrote that I was (still am!) female.

Lately, as readers here know, I've been pondering the women thing. Women who slam women. Women who call other women bullies. And in some of the comments on my "Bullying" post, a few commenters suggested that perhaps the women in question felt bullied because I didn't, as a woman myself, validate their emotion with appropriately womanly or maternal verve.

This and other similar experiences in the real world have led me down a path of thought, and I'd like others' input. As some of you likely know, Baron Cohen et al. have hypothesized that autism may be related to androgenizing in utero. That it's a kind of hyperandrogenized state of being, cold, hard Spock-like thinking and all. As many of us know, analytical thinking and cold hard rationality aren't only the province of men, but they are certainly considered to be largely masculine traits. I won't get into my observations of how men show emotion, too, or how level-headedness can be more contextual than a personality trait.

But I do have a few things to note. I have a low low voice. As in, I still am mistaken on the phone for being male. I've got those weird finger length ratios that indicate that I'm a tad...masculinized. I've got a muscularly analytical brain, and when someone cries around me, I don't think about giving hugs, I try to find them a tissue, even though I may sympathize strongly with their emotion.

This is not to give the impression that I'm a refrigerator mother--heaven forfend--I passionately love the people I love and have no problems expressing that. But I do not seem to view everything through a prism of emotion as many women around me do, and I think it may be one reason we often don't seem to understand one another well. In fact, it often leaves me feeling somewhat disconnected in groups of women. I don't see conflict as bullying or offensive. I view most situations of crisis or concern as problems requiring a solution, rather than an emotional response (although I'm fully capable of saving that up for later, post crisis). Also...I really really hate shopping.

So...any other autism mothers out there who are, um, a bit masculinized? Let me be clear: I'm all woman, people. Just perhaps a little...different. Are you?

Reading the signs

2009-11-06T08:41:00.004-06:00

Like a lot of kids, autistic or not, TH is not very good at articulating his feelings. In fact, he may not even be aware that he's having these feelings, yet he shows that they're there in many ways. We always know that something, something is on his mind when he silently materializes downstairs in the evenings, well after his bedtime, just to sit by me and hum or coo. We know there's really something going on when he wants me to come upstairs later and lie down to talk to him. And now we've got a new sign: he wants to come sleep next to me.

And he did. Last night (or this morning, really), we had two big things happen. First of all, our oldest child, who normally sleeps like he's under general anesthesia, actually came into the bathroom at 4:45 a.m. and peed in the toilet. The last time that child was awake at that hour, it was about hurling, not micturating. In fact, it was such a strikingly unusual event that both of his parents woke up and came to the bathroom, concerned that it was one of the first signs of an impending apocalypse.

The second thing he did that he has not done in...I don't know how long...was to come sleep next to me. This child is the most restless sleeper I've ever known. He never stops moving. Our other two, who've slept next to me more frequently, are quiet, still sleepers, so still you'd hardly know they're there. Not TH. He fidgets and twitches and shifts. Every few minutes, I get an elbow in the ribs or twitchy little fingers bumping my arm or a full body wiggle. I didn't really care because I'm tired enough these days to at least doze pretty well through all of that.

This comes across as big stuff. What's on his mind? We'll learn, but I don't know when. For TH, these emotions, their names and their causes, have to percolate for some time before they bubble up, usually in the dark, after his bedtime, when I'm lying next to him having one of our nighttime chats. Invariably, in the midst of one of our typically discursive conversations, he'll suddenly out with it, usually some anxiety bomb so surprising that I'm glad he can't see my facial expression in the dark. So, we wait, patiently.

Meanwhile, he remains classic TH in many ways. This morning when he woke up in our bedroom, he found that his dad had laid out his school clothes on our bed. TH usually has his clothes laid out in his own room, where he dresses every morning. Unable to handle this slight change in routine, he insisted on taking his clothes from our bed and putting them on the floor in his own room, where he then proceeded to get dressed. As per the usual routine.

TH is angry?

2009-11-05T08:54:00.004-06:00

If you know TH or have read enough about him here, you know that anger isn't an emotion he expresses a lot or even very clearly. His version of anger is to squinch up his face in a grimace for about 2 seconds. Then, the feeling appears to pass immediately, and he moves on.

So, it's coming as a surprise to us this last week or two that he's expressed anger in two ways, talking to us about his anger at a specific aide at his school and actually getting physically angry with his BFF in gym class.

Don't get me wrong. He's gotten annoyed with his younger brother Dubya and sneaked in a minor blow or two. Like any two brothers who are close in age and who spend almost every hour together, that's gonna happen. But we've never seen him express this level of anger, especially about the aide.

And the causes seem minor to us. Since school started, he's been reporting frequently that at lunch, he "forgets" to eat because he's so busy talking to people near him. He's a huge talker, doing it almost compulsively, especially in surroundings with lots of sensory input, like big cafeterias full of noisy chattering children, food smells, and endless movement. That sets him off, so he talkstalkstalks. Concerned that our overgrown oldest wasn't getting enough midday nutrition, we asked his behavioral specialist if someone could just check on him and remind him to eat.

The aide charged with this duty has been, perhaps, a tad overzealous. TH gets in the car almost every day complaining that she's "bothered" him, made him eat some food he doesn't like (like sweet potatoes or melons, and I'm right there with him...ugh). Normally, he'd brush off something like this, but he really really really doesn't like being harassed at lunch. As he exclaimed to me yesterday in his usual 80-dB voice, "Lunch is my only time to talk! And she keeps bothering me! Telling me to eat foods I don't LIKE!" The aide apparently has also extended her dominion over his activities to the playground and a couple of other venues, and TH's antipathy about the situation is so strong that he takes anything she says as an offense.

I don't encourage this kind of blanket response to a person, and I also am not going to run to his "rescue." I've told him that he should tell his behavioral specialist--who knows him VERY well--about his feelings and see if that leads to any changes. The only problem is, I think this aide may also be the person who helps him open his milk cartons at lunch. He's also been telling me that these are hard to open and when he can't do it, he just sits there, without his milk. But there's always that delightfully cold water fountain, I suppose.

The other incident with his BFF is more disturbing. They were having a disagreement in gym class about strength. BFF did something, and TH, as he put it, "pushed him down, and he cried a little." And then TH said, "Sometimes, I just lose control of myself like that." It's odd that he'd say that, because I've never known him to lose control of himself in anger. In excitement? Yes. In fear? Yes. Anxiety? Yes. Anger? Um...no.

We're not sure how the BFF ultimately responded to what TH describes as his repeated apologies. He was obviously quite worried about the effect of his behavior on his BFF. But he's never clear on describing other people's feelings or responses to him, which makes understanding the conclusion of episodes like these frustratingly difficult. Is the relationship over? Are their plans to form a rock band on hold? Will they no longer be roommates in college?

Overreacting parent that I am, I'm now angsting myself about a couple of things. Is this some beginning of early preadolescent expressions of anger? Will my cheerful, quick-to-get-over-it, funny, happy 8-year-old boy turn into some kind of hormonal, angry spawn I don't recognize any more?

Or...is he finally feeling and expressing something that many children have recognized in themselves their whole lives?

Out of all of the technological advances we've seen even in our own lifetimes, why o' why is it that no one has invented a decent crystal ball? The Magic 8 Ball keeps giving me conflicting responses, and I can't figure out how to interpret "Outlook good."

Bullying?

2009-11-04T13:14:00.004-06:00

TH may be experiencing a little bit of bullying again at school. There are signs. Yesterday, he got in the car, made some vague allusions to children saying "violent" things to him, and then proceeded to be off the hook for the rest of the day: vocalizing, nonstop movement, flapping, completely out of focus. Homework was quite an adventure.

He experiences bullying for the usual reasons, and he experiences the usual kinds of bullying. Sometimes, it's kids who "trick" him into doing something that he thinks he's doing for its inherent humor but that really is just making a fool out of him. Other times, it's more direct--taunting, threats, that kind of stuff.

So...and now this is about me...given my hyperawareness of bullying and my utter distaste for sadism of any kind, I'm a tad bemused by accusations of bullying I and others have been receiving over on a couple of BlogHer or BlogHer-related posts about vaccines. It's weird to me to be accused of bullying, and I honestly don't even understand how women interacting virtually, with me on one side and a handful on the other, can call anything about this situation "bullying." And how on God's green earth could I, by myself, or other posters, by themselves, be bullying them? I don't know. Where I come from, exchanges involving disagreement are just that: exchanges. Discussions. Conversations. I'm there contributing factual information (sure, I'm blunt, but not personal at all), making the occasional ironic aside. How does that perspective on my part or the part of anyone else cross the line into...bullying?

Curious about the accuracy of the accusations, I turned to Google U to find out what the expert and dictionary definitions of bullying are. I know it when I see it, but...what is it, really? Wikipedia tells us that, "Bullying is repeated acts over time that involves a real or perceived imbalance of power with the more powerful child or group attacking those who are less powerful." Um...nope. That doesn't fit.

An education site quotes Tattum and Tattum (1992; no idea who they are) as follows: "Bullying is the wilful, conscious desire to hurt another and put him/her under stress." Nope. That's not it, either. Hurting people is not my thing. Not even people I almost hate, and certainly not people I don't even know. This site goes on to say that "bullying occurs when there is an imbalance of power." Hmmm. Our powers all appear to be the same. We all seem to be cognitively functional, able to type, form sentences, argue, use the Internets.

Realpsychology.com defines bully thusly: "an intentional act of aggression, based on an imbalance of power, that is meant to harm a victim either physically or psychologically. Bullies usually operate alone or in small groups and choose to victimize individuals who they perceive as vulnerable." Again...no one involved here seems to be a vulnerable population. No one seems to be at some kind of disadvantage. In other words, we all seem to be fully capable. And on my part, at least, there is certainly a complete lack of intention. Yes, we are women arguing, something I've already addressed recently. But bullying? Oh, hell no.

Bullying, in my opinion, isn't a word to throw around lightly. It's serious. It demeans, it degrades, it demoralizes. It's power wielded sadistically against a weaker target, something any one of us has the capacity to do and the choice not to do. It's what happens to my son on the playground or at school or in the swimming pool or at birthday parties, targeted for his vulnerabilities in ways that give sadistic pleasure to the perpetrators. I know bullying when I see it, and sisters, this online exchange over vaccines ain't it.

The Mercola "Facts" poster

2009-11-03T14:00:00.015-06:00

OK...there's a huge Mercola article alleging that the H1N1 pandemic is a "massive" illusion (created by, presumably, very large magicians with great big scary magic wands). I'm pondering tackling the entire article, but meanwhile, I think it'd be OK if I took on the "fact" sheet they offer to anyone who'd like to print it and hang it up in their communities. See below each "fact" (there's really only one true--in intent and content--fact on there) and my parsing of it. I'd aver that if this list of 10 "facts" has something squirrelly about it, that lengthy tome accompanying it might have a wee bit o' the rodent about it, too. We could start with their obvious incapacity to understand the definition of "pandemic."

Also...what is up with the creepy alien hand on that "fact" sheet? Is that what getting a vaccine does to you? It makes your hands transparent and boneless?

Anyway...

1. "Fact": Multidose vials of seasonal and injectable H1N1 swine flu vaccines contain MERCURY (all caps theirs), which is a "known neurotoxin."

Observations: The actual compound of the preservative in question is called thimerosal. It consists in part (about half) of a kind of mercury called ethylmercury. Millions of doses of the seasonal vaccine are made available that do not have thimerosal. If you're concerned about the multidose formulation, ask about single-dose formulations. Or get the nasal vaccine, which is not made using thimerosal. And "mercury" is not a monolithic term describing any and all forms of mercury. Routes of exposure, chemical composition, and concentrations all play a role in whether or not it will cause harm. Water is a great example. Ingested, it's OK...unless you ingest too much. Inhaled, it'll kill you. Topical exposure is OK...unless you're exposed over a very long term. Oh, and molecular content matters, too. The difference between ethylmercury and methylmercury is a matter of a couple of atoms. No biggie? Well, the difference between H2O (good old water) and D2O (heavy water) is a matter of a neutron...yet heavy water is highly toxic in any number of ways in sufficient concentrations. In biochemical reactions, a small change can make a huge difference.

2. "Fact": Some "swine flu" (quotes mine) vaccines contain formaldehyde and exposure to formaldehyde has been shown to increase the risk of developing certain CANCERS (all caps theirs).

Observations: This old chestnut? Still? Formaldehyde is a carcinogen. So is estrogen. Oh, and enjoy this little read about the naturally occurring carcinogens in our diet. Or google "aflatoxins" and then stop eating peanut butter. The issue is, once again, that it's the dose that makes the poison. Oh, and the fact that the body actually makes formaldehyde, too, more than you ever receive in a vaccine. Bottom line: the amount of formaldehyde in vaccines ain't gonna give you cancer any more than that peanut butter sandwich will.

3. "Fact": It is unknown whether or not it is safe to give the "swine flu" vaccine to all pregnant women, children, and adults especially if they are chronically ill or sick at the time of the vaccine.

Observations: First of all, look at this list of clinical trials. And then check out the results of this trial. Looks like (a) we've got trials people establishing the safety and (b) we've got trials specific to pregnant women with real numbers and real results, not made-up "facts." This "fact" is also misleading because no one claims that it is safe to give any vaccine to "all" individuals in a given population, and there are clear clinical guidelines for determining who should receive a vaccine and who can have a nasal vs. jab vaccination.

4. "Fact": After the "swine flu" vaccinations of 1976, there was an increased risk of developing Guillain-Barre syndrome (GBS).

Observations: Yes, that's true. But 1976 was 33 years ago, and this vaccine is emphatically not that vaccine. Once again, this "fact" is simply meant to imply an assertion on the part of public health experts that has not actually been made. The "swine flu" vaccination of 1976 is simply not relevant here.

5. "Fact": Guillian-Barre and "brain inflammation" has (sic) been reported after seasonal flu vaccination.

Observations: From the CDC, "In most studies, no association was found, but two studies suggested that approximately 1 additional person out of 1 million people may be at risk for GBS associated with the seasonal influenza vaccine." Two studies of several. One in a million, literally. Better odds than those for being hospitalized or dying from the flu, that. For a great parsing of the relevance of GBS in the context of flu vaccines, read this.

6. H1N1 vaccines have not been evaluated for their ability to cause cancer, impair fertility, or damage genes.

Observations: This is another misleading statement, meant to imply that someone has totally dropped the ball here in a huge rush or that these are things that vaccines might do to you. Neither of these is the case. The Strategic Advisory Group of Experts to WHO has found that studies in experimental animals (human studies would need to be longitudinal) with all forms of influenza vaccines have found no effects on fertility and no harm to pregnancy or to the fetus. The contents of these vaccines are well tested over decades for their carcinogenic and mutagenic properties at relevant doses. For a review of the relevance of concentration, exposure routes, and timing of exposure, please see 2, above. You don't develop cancer from an acute, very low-dose exposure to any of the ingredients of influenza vaccines and more than you do from eating that peanut butter sandwich.

7. "Fact": It is not known whether the H1N1 vaccine can harm the fetus of a pregnant woman.

Observations: See 5, above, and 3. And remember that what is known is (a) having influenza while pregnant is not a good thing for the mother or the fetus, and (b) this particular influenza preferentially severely affects pregnant women. Mercola argues that these women are also obese or that many are, and that this somehow negates the need for pregnant women to have the vaccine. I'll be walking on that one in another post.

8. "Fact": One manufacturer product insert for the H1N1 vaccine states that immune response was evaluated only in 31 children between the ages of 6-26 months.

Observations: Obviously intended to scare the hell out of anyone--and I'm still struggling to figure out what their dog is in this hunt (beyond the obvious fact that they have something--books! books! books!--to sell). See above, 3, for the list of clinical trials. For updates on the results of these trials, read here. There is no trial or safety-testing vacuum here.

9. "Fact": The live virus nasal spray H1N1 vaccine is not recommended for pregnant women or for children under age 2 or anyone with a history of asthma.

Observations: Doh! They were soooo close. Of course, they're still trying to freak people out, so they mention ONLY children, pregnant women, and asthma. The well-disseminated clinical guidelines for this nasal vaccine--which are no different from those for seasonal flu vaccine--are actually more detailed than this and include, in addition to the above heart-string-plucking populations, people 50 or older (so hard to use them for fearmongering), people who are at high risk for complications from flu (e.g., chronic heart or lung conditions, kidney failure, diabetes, immunosuppression), children under age 5 years with a history of wheezing, anyone who's had GBS recently, and anyone who's allergic to chicken eggs. (finally corrected HTML error there. Sorry).

10. "Fact": The H1N1 strain has not been associated with more deaths than previous seasonal flu strains.

Observations: It's funny how you can use pregnant women and children to scare people and then avoid mentioning them at all for a different purpose. The fact is, more pregnant women and more children are dying from this flu. More otherwise apparently healthy people. Seasonal flu has a certain predictability about it in terms of whom it kills that makes us complacent even as tens of thousands of people die from it yearly. But H1N1? It defies those predictions and targets healthy groups. That and its potential to go virulent are what have public health experts urging vaccination.

People are free, of course, to read the Mercola "fact" sheet and be manipulated and to try to use it to manipulate others. Or, they're free to get into the messy details and really examine the true facts--facts about biochemistry, about bioavailability, about carcinogenicity, about what words truly mean, about sins of omission and commission, about accuracy in language and in science--and draw conclusions accordingly.

Other links (added as they arise):

A news release confirming risk to pregnant women (11/3)

H1N1 expected to cause more deaths in northern winter; 5,712 dead so far worldwide (11/5)

A mom reconsiders. USA Today (11/6)

From HuffPo: A question of harm (11/7; thanks to Liz Ditz via Twitter)

My blog post, copied and pasted in its entirety (don't remember giving permission for that), at Democratic Underground (11/9). Some seem unable to understand the meaning of "sins of omission and commission."

A WaPo blogger weighs in on the confusion (11/9)

And so does MSNBC (11/9)

I can't leave out LBRB's takedown of AoA and the latest on H1N1 in the UK (11/9)

From the New York Times, quoting Paul Offit (reg. req'd?) (11/9)

No more Aspergers? Poor Hans.

2009-11-02T22:10:00.007-06:00

Forget the vaccine-misogyny thing! They're about to take away my baby's label!

The New York Times reports that the proposed DSM-V (shudder. deep breath. sigh.) will roll Asperger's into autism spectrum disorder, period, and render the diagnosis of "Asperger's" obsolete.

Nooooooo!

I'm kidding. TH is going to be excited as all get out when I tell him that the dreaded "ass burgers," as he spells it and thinks it's said, may vanish from the lexicon. Temple Grandin, it seems, would like to see it stay.

From my perspective, it doesn't change much, and I think it's a good idea to stop trying to parse arbitrary divisions. People tend to latch onto these and "accuse" Aspies in particular of not being "real" autistics. TH is autistic. Born that way. Seems headed to stay that way. As one strugging DSM-V-er describes it in the piece, the committee intends to define autism based on core elements common to all types: impaired social communication and repetitive behaviors or fixated interests. She goes on to say that in autism "everybody is a snowflake," and praises the analogy as "perfect."

We love our little snowflake (really, he's quite pale), impaired social communication, repetitive behaviors, fixated interests, and all. When he refers to himself, it's sometimes as "autistic," but most often, it's "just a kid." And that's what really matters, regardless of what the DSM-V decides to call him.

Vaccines, feminism, autism, motherhood

2009-11-01T10:25:00.003-06:00

In discussions across the Web, a theme that emerges repeatedly is, "Should a mother have her child vaccinated?" Yes, "balanced" media outlets say "parent," but the reality is that this discussion occurs primarily among mothers. A peek, for example, at the comments on this post over at BlogHer gives you an idea of how the discussions percolate, with the mother having the final decision (and leaves me wondering, "How does one keep 'x-rays to a minimum,' exactly?). Interestingly, in my excursions through commentary on the Internets, I encounter quite a bit of "Dad says yes vs. Mom says no" stories.

And vaccination, it would seem, is a very maternal concern. We are often (usually? almost always?) the ones who take the little ones to the doctor, oversee the jab(s), nod our heads, initial the papers, expose them to the risks. Yes, there are risks. But as I've noted repeatedly on this blog, the benefits of vaccinations--personally and for society--far far outweigh the risks. By values of many orders of magnitude.

Thus, the womanly associations are intertwined with choosing or not choosing to vaccinate a child, and a maternal scrum invariably results from any news story about it, especially in the unsupportable climate of fear over the innocuous (pardon the pun) H1N1 vaccine. I've noted in my travels through the world of vaccine commentary that it's just fine for a woman and a mother to state that she's not having her child vaccinated, but if a woman clearly states that she is or argues on the side of rationality, well...that's tantamount to child abuse. And brings on accusations of exactly that.

Nowhere do the shrieking misogynist hordes come out torches flaring more than they do on anti-vax autism sites. While it's perfectly acceptable on those sites to claim maternal protectiveness of your child and deride vaccines as poison, doing otherwise means it's torch-and-pitchfork time. Even as antivax mothers claim the right to parent as they choose (and it's certainly their right), women who choose otherwise from them are child abusers who don't take care of their children, don't know the first thing about keeping children safe, don't have a clue what it means to be a "good mother." I've personally been told that because I vaccinate my children, I must also be a mother who never sends her children outside and never breastfed and who stuffs her children with all manner of processed, non-organic foods, all dyed red. I'm a woman who just doesn't get what it means to really really care about my children. That, of course, reduces me from 100% true womanhood to some lesser being, not quite woman enough to be a good mother.

In the interests of honesty, I've never gone to a site and masqueraded as a father who is for vaccination. But my guess is that such an experiment in sex attitudes would yield a very different response from the howling hooligans of the antivax crowd. I envision a "there, there, you're a dad, let me explain this to you carefully because you don't really know how to parent and you don't understand the nuances of child safety the way mothers do." And I've noted without this experiment that when a poster with a male persona expresses information based in science about vaccines, that poster is less likely (this is a qualitation, not a quantification) to be vilified as a terrible parent who crosses the border into child abuse with every jab. Naturally, that parent is also less likely to be accused of never having breastfed his child.

In a special group are the mothers who, based on gut instinct or rational decisionmaking or both, decided to vaccinate their children and who have children who are autistic. We are a unique bunch, once upon a time blamed for our children's autism because we were refrigerators, reduced to cooling appliances capable of performing a service but lacking in the necessary emotions to accompany it. Our inability to emote and exhibit warmth, according to adherents of this idea, led to our designation as Refrigerator Mothers. Where were the fathers in all of this?

I guess they just didn't matter. There, there.

And now we have an expansion of the anti-woman toxic talk. It's not enough to abuse women who choose to vaccinate their children. It's not enough to denigrate or ignore completely the role of fathers in this discussion, or to dismiss them because as men, naturally they lack the necessary emotion to really understand keeping their child safe. It's not enough to target autism mothers as responsible for their child's autism, once as Refrigerator Mom, now as Mom Who Chose Vaccination. Nope. We get to shoot the female messengers, too.

I posted here a few months ago a story by Jonathan Rabinovitz published in Stanford Medicine. It's a great piece that clearly lays out aspects of the autism-vaccine tale. There was not a place for comments, but Rabinovitz posts frequently on a related blog. A review of the comments on his posts on this blog yields nothing much in the way of sexist commentary. Instead, you can find fairly restrained questions and answers, in an atmosphere of relative calm. Unless you check out the blog post about Amy Wallace's story in Wired. Note the comment. This post was written by Stephanie Pappas, who is, presumably, female. In the comment, a certain well-known autism parent blogger notes, "Good one sided (sic) cheerleading!"

That female-related comment is just the beginning. While the notoriously misogynist Age of Autism--and they're proof to anyone who's wondering that yes, women can be misogynists, too--doesn't appear to have a single post about Rabinovitz's piece, it lost no time in attacking Amy Wallace, the woman who wrote the Wired piece. AoA mouthpiece and misogynist extraordinaire J.B. Handley went so far as to use rape imagery (Paul Offit as perp, Wallace as victim) in his excoriation of a woman who dared to write a pro-vaccine piece before he hastily retracted that symbolism and replaced it with a lesser example of his rampant hatred of all things female. And Wallace has received many comments laden with anti-woman terms, calling her a whore and a prostitute, among other treasured epithets. (Wallace posts much of what she receives--good and bad--on her Twitter feed, which you can read here).

Thus, it seems that women have much to bear, especially if we choose to vaccinate our children or choose to use rational argument and science to defend vaccination, or both. We're child abusers, prostitutes, whores, large cooling appliances, cheerleaders, rape victims. As I watch this misogyny manifest itself in ways large and small, subtle and overt, I find myself reminded repeatedly of the great line attributed to Elizabeth I: "Had I, my lords, been born crested not cloven, you had not treated me thus." Of course, she uttered those words more than 400 years ago. It would seem that as far as we women have come, we still have a long way to go, baby.

They are vaccinated

2009-10-29T09:06:00.003-05:00

Yesterday, I willfully, wantonly, and with parental and civic responsibility aforethought took my three children to receive the H1N1 vaccine. No one appears yet to have developed autism as a...oh, nevermind. I am pleased to report that Little Da, who at our previous appointment spent 20 minutes wallowing around on the floor at the doctor's office in a silent tantrum, stepped right up to the scale this time and snorted his vaccine like a pro. Yes, like a pro! The fun part was that it was absolutely free. I had a fleeting moment of feeling like I was part of the French healthcare system.

Strange to think that vaccinating my children could be a controversial decision on my part, but it is. Some people offensively assert that parents who do what I just did are abusing their children, purposely placing them in harm's way, carelessly exposing them to chemicals with names that the accusers, at least, don't recognize. Some people take it so far that they will send death threats to journalists who don't vilify vaccines and resort to sexist name calling, including prostitute and whore.

Sadly, everything they think, everything that worries them, is almost as dangerous a plague of viral verbiage as the real viruses that threaten those most at risk from the real and deadly diseases against which we vaccinate. The misinformation, the outright nonsense out there is legion. The rumor mill grinds out all of the facts and leaves only buzzwords that scare people to death, while leaving them and their children exposed to the possibility of dying from a preventable disease. Or worse, unintentionally infecting a member of a vulnerable population and killing them.

The passionately misinformed with their accusations of abuse and prostitution use hard words. But I'd take it all and more to do the right thing by my children and the society of which they are a part. I encourage any parents who vaccinate to make clear that they do the same.

The falseness of prophets

2009-10-28T09:22:00.008-05:00

I was reading The Onion last night. I often read The Onion. Where else will I learn that I will win the lottery that day unless I read this horoscope? Where else will I be able to check weekly for them to top (no pun intended) the all-time best Onion headline ever: "Trophy Wife Mounted"? In addition to reading the fake horoscopes (which I realize is redundant), I also read the real stuff: movie reviews, interviews, and so on in The A.V. Club section.

What I didn't expect to learn from this fine publication was the following. Ever drawn to all things Wild Things, I homed in on an interview with Dave Eggers and Spike Jonze. Midway through the published piece, I came across their discussion of how Where the Wild Things Are was received at its initial publication. Apparently, there was an outcry, largely because there was no "lesson" in the book: Max gets no comeuppance--he gets his dinner. His mother calls him a name, yet it's OK. Oh, how very quaint to expect a children's book to have a message that only adults would appreciate.

The two interviewees relate that one of the most outspoken critics of the book was a "famous" child psychologist who, as it turns out, had never actually read the book. Not bothered to read the 10 lines of text in a children's book before publicly bashing its content.*

Who was that brazen, false child psychologist, you may ask?

Why, Dr. Refrigerator Mothers himself, Bruno Bettelheim.

Surprised? Strangely, I was not. There's no surprise to me that a man who would willfully and carelessly destroy the family dynamic, parental self esteem, and childhood potential of hundreds of autism families would, with no basis in experience, bash one of the best children's books of all time.

*I have not independently confirmed this statement. But...I have read Where the Wild Things Are. Thousands of times. I think that at least independently helps to confirm that I am not a refrigerator mother.

The Dubya Warrior

2009-10-27T10:17:00.005-05:00

I've found a potential therapist for Dubya. The first couple of people I called, both psychiatrists (i.e., Minor Dieties), apparently are really just glorified, board-sanctioned drug dealers who appeared to have no interest whatsoever in my son as a person or in behavioral approaches to his problems. In fact, the secretary of one of the MDs informed me that Dr. Dopedealer "doesn't 'do' behavioral therapies. Her main focus is med management." If someone on a street corner on the East Side had this as their main focus, they'd call it possession with intent to distribute. But if an MD does it for a child she has no intention whatsoever of actually getting to know, it's called "med management."

Sorry to scathe and let me just say here that ~~I have more doctors on my sh!t list than on my all-praise-them-list~~ I have many friends who are doctors. Really, I do. But they're the good doctors, of course.

I gave up on the MD world for my son, however, and moved back to the therapist world, as in PhD, MSW, etc. We've got a cold tie for success with this group of practitioners. Our children's caregiver in San Francisco was an MSW who basically worked with them eight hours a day, five days a week. She was like magic with them. But we also tried a psychologist for TH when he was ideating suicide a lot at age 4, and we didn't find that so successful. And I forgot until this moment about the utterly worthless guy who "helped" us with "suggestions" over six $150 sessions about how to apply behavioral approaches with Dubya's ADHD diagnosis. That was the biggest waste of $900 I've ever known.

The therapist we've chosen is an MSW. I meet with her this week, and based on recent events, it's not a moment too soon. Dubya's "confessionals" have been coming non-stop. He gets in the car after school and starts in, sometimes confessing about intrusive thoughts of recent vintage, sometimes resurrecting old "transgressions" that can reach as far back as age three or four. He confesses all through homework, dinner, bath, leisure time...any time one of his parents is around to lend a priestly ear. It's a fine line, dealing with these. On the one hand, you don't want to dismiss his concern and anxiety, which is quite real for him. On the other, you don't want to validate these worries about ephemera by giving them too much weight. Accompanying the hyperconfessional tone around our house is a snort-tic that would wake Rip van Winkle, one Dubya fires off at a fairly consistent per-second rate.

What goes on in that obsessive, tic-ing, worried mind of his? We're not entirely sure, but we do know a bit about what comes out. Over on our family art blog, I've posted a recent picture Dubya made, depicting a battle scene. Was he in WWII in a past life? Where does he see these things? How does he know what it all looks like?

It's going to take time, it seems, to wander the labyrinth and discover the secrets that are the mind of Dubya. We're hoping that this therapist will prove an able navigator. At the very least, she's no knee-jerk, deity-from-a-distance "med manager."

The Dragon Warrior

2009-10-26T09:10:00.002-05:00

He didn't inherit it from me. My tongue is tied, so short that I can only extend it from my mouth about half an inch. It's ridiculous, really, and I can't roll my R's, a fact that I blame for my inability to master Spanish.

But TH has a tongue that has a life of its own. How to really get this across...hmmm...have you seen Kung Fu Panda? That part where the praying mantis hits a nerve and paralyzed the panda, leaving Panda with a cockeyed, paralyzed expression, the tongue lolling to the side (see image)? That's TH. Except in motion, the tongue moving from side to side, the face shifting like a rolling wave of distortion.

He's not entirely unaware of these faces. In the mornings, when he's supposed to be brushing his teeth, the dead silence from the bathroom tells me he's looking at himself in the mirror while he makes a series of terrible gargoyle expressions at himself. But he often does it completely unaware of its effects.

Like he did yesterday in church. In the front pew. Repeatedly. To the distraction of all of the adults who were desperately trying to listen to a sermon about Job and leviathan. TH expressed a wish to sit with us during the sermon, rather than being in Sunday school with his peer group, and we granted it. He had a dinosaur book with him. Periodically, he'd come across a particularly violent depiction of the depredations of a carnivorous dino, and there'd be that face...just like Kung Fu Panda. And now that I think about it, it's not just the acupuncture face he makes; many of his expressions look just like that panda. Is he the Dragon Warrior?

Anyway, with his tongue lolling around like he had tardive dyskinesia, I felt uncharacteristically a wee bit self conscious there in the front pew, TH behind the scholarly minister, rolling his tongue around and distorting his face in shock at the image of the wreckage of a T. rex dinner, the unwitting minister continuing her interesting discourse on Job. And I noted that many parishioners had, at least momentarily, left Job by the wayside to watch TH express his shock at what T. rex could do to another dinosaur (or what a human artist thought a T. rex could do). They didn't know that's what they were watching, they were just watching.

I reminded him repeatedly, poked him, hissed in his ear a couple of times. Yet he kept forgetting. There'd be that tongue, the Kung Fu Panda succession of facial distortions, the distracted parishioners. Little do they know that this unlikely little fella is going to grow up to be the Dragon Warrior someday.

Cells alive!

2009-10-23T09:29:00.003-05:00

The title of this post actually comes from one of my favorite sites on the Web, both for teaching and just for geeking out. While we're geeking, I also love this site. I suggest clicking on the cholera and Listeria videos if you really want to freak yourself out. Watch the cholera toxin cause cells to pump themselves dry! Watch that Listeria divide before your very eyes and overwhelm the cell!

Microbes, at a distance, are cool. Close up? Well, thank God for vaccines.

And, with the exception of viruses, microbes are cells, and that takes me to the real point of this post. How's that for a segue?

You may recall from a previous installment that we resolved the TH/homeschool dilemma thanks to the greatness of his school: He gets to spend some time each week pursuing an interest of his choosing, immersing himself in it, collecting the numerical facts about it that he loves so much, looking at pictures and videos, and reading about it.

We've been discussing his initial choice of subject. And for once, it's not acorns or sharks, his usual monomanias (or is that bimania?). At first, it was "science." I mentioned that this topic might be rather broad and suggested that perhaps he narrow it down. We expected that he might pick something marine or foresty or large. But instead, he decided yesterday that he'd study cells.

He's gone down this road before. His favorite kind of cell is a macrophage, still. The choice he made yesterday got him so excited that he dug out his science fair poster from first grade and set it up in the garage. Showed it off to both of his slightly bemused younger brothers and chattered happily about it to me. Looking back, I'd say the child did a really good job on that poster, considering he (a) couldn't read at the time, (b) has continued difficulty with project management, and (c) had no real idea of what we were actually doing. But it's all his own work. Yes, autistic people can enter science fairs, too.

So, we enter the world of cells. I love 'em myself, so I'm looking forward to this. And as someone whose eyes simply glaze over when someone starts talking botany (I love plants! I just don't...love botany), I'm immensely relieved he didn't select acorns. Although sharks would've been pretty cool.

Throw that away?

2009-10-22T10:09:00.003-05:00

We've been having some memory-related problems around here the last couple of days, and in the interests of full disclosure and oversharing, I'm going to describe two here.

Last night, as I was making my children their almost completely unprocessed dinner (grapes! scrambled eggs! carrots! toast with local honey!), I got out some carrots. In the midst of this, I was also busy telling Mr. DMFP about my long day at a conference workshop in a room full of science writers of all shapes and sizes, mentally, Web 2.0-ly, and otherwise, learning all about the Web 2.0 world.

I seem to have gotten so caught up in my fascinating tales of the minutiae of tweeting, podcasting, blogging, and otherwise Web 2.0ing that I misplaced the carrots. We looked all over the kitchen. All over the dining room. We blamed the preschooler. We blamed each other. Then, finally retracing how my mind actually works, I looked in the trash can. There they sat, perfectly good carrots, bright orange against the black trash bag.

Reader, I washed those carrots and used them anyway. How's that for frugal? Please, don't tell the children. Pinkie swear, that trash can was otherwise totally empty, the bag brand new.

Today, I'm home with TH. He's almost never sick--which seems to be a trait for some autistic kids and not a trait for others--so when he says he feels bad (oh, and when he has a somewhat scary, productive cough)--I keep him home, even without fever. He had to go with me to take the others to school, so he was completely dressed. We returned home, where he happily if congestedly engaged with his Wii, where he stands, Wiimote in hand, playing Mario-something-or-other while repeatedly saying "Roger, roger" in high-pitched "robot" tones. That's a favorite for him. I think it's his "Clone Trooper" voice, one of a broad repertoire. We're not entirely sure what TH's actual voice sounds like.

As I went about my business in the kitchen (seems like these days, I'm either in the kitchen or in the car), I opened the trash can to toss in something and saw...a pair of perfectly good socks in there. Once again, the trash bag was almost empty except for these socks. I carefully extracted them and interrupted Mr. Roger-roger: "TH, are these your...socks?"

He looked at me blankly, and nodded. "Baby, they were in the trash. Why did you throw your socks in the trash?"

Clearly confused, he thought for a moment, then got that grin of dawning realization on his face. "Oh," he said, looking pretty sheepish. "I thought that was the laundry basket."

Have we finally solved the mystery of what happens to all of the socks around here? I guess we need to stop blaming the preschooler.

The Wild Thing

2009-10-20T09:06:00.004-05:00

Little Da is our Wild Thing. There is something a bit feral about him, even in the midst of his uncommon courtesy and self control. While he is, indeed, the child who only two days ago at a birthday party espied a couple of stray marshmallows and asked, carefully, "Can I eat these?", he's also got this full set of sharp-looking teeth that he bares while laughing a slightly untamed laugh. His canines are no laughing matter--Dubya's got their imprint in his back as we speak, having suffered the payback of some transgression involving a golf club/light-saber/sword that Little "had first." Yes, we're working on using our words instead of our teeth.

Given his edge of ferality (is "ferality" a word? No matter), it may come as no surprise that of all of our children, this one loves Where the Wild Things Are the most. They've all liked it, but he's a boy obsessed. We read it--and have been reading it for at least a year--on a nightly basis, many many times in a row. And his favorite parts are when Max's mom calls him "Wild thing!" and when Max calls for the "wild rumpus" to start.

Do you remember the first time you encountered this most insightful of children's books? For some reason, I do. I was three. It was in my grandmother's kindergarten. Ruling from a wheelchair, she ran a private kindergarten from the "carriage house" behind her home, and the place was packed with books, one of which was this Maurice Sendak classic. I found it in a pile in the corner. I opened it. The Wild Things looked like friends to me, but edgy, unpredictable friends who might, at any minute, perhaps bite you "just to see." And I completely identified with it, the getting in trouble, the satisfying fear, the edgy Wild Thing companionship, the safe retreat to one's own room.

It wasn't until I started reading the book to my own children, however, that I realized the depth of those 10 lines of words. Max steps into a self-created adult world in the place where the Wild Things are. He becomes that adult bossing him around. He practices adult behaviors, punishing his own perceived malfeasance in others, exorcising childhood shame, taking control where he's had none. Then, he wearies of being a grownup and wants, simply, to be a child again. A foray into a scary world followed up by the safety of his own room and a hot supper waiting for him. The hopes and fears of childhood all packaged neatly and wildly into those ten lines.

Now, there's a movie. I'd heard the trailer was a tad scary. So, I watched it. And Little came to watch with me. Again. And again. And again. Every night now, as many times as I can tolerate, we watch that trailer. And there are two moments in it when my semi-feral little Wild Thing shows those terrible teeth of his and cuts loose with that edge-of-safety laugh: When Max calls out, "Let the wild rumpus start!" and when a Wild Thing says to Max, "I'll eat you up, I love you so." It reaches right to Little's core, and his whole body reacts with the thrill of it. Every. Single. Time.

I've seen reviews of this film, all of them adult written, of course. And I've not seen the movie myself--I'll be taking the two older kids next week. But based on this trailer and my own Wild Thing's reaction to it, I'd say that some adults may not remember that edgy, fearsome world of childhood pretending and sharp-toothed adult behaviors that, if we were lucky, we only acted out as imaginary play before returning to the safety of our own rooms, a hot supper waiting for us. And then, some of us do remember, quite clearly. Sendak--and apparently Spike Jonze--seem to recall with native, persistent intuition that for children, in their heads and outside their heads, Here There Be Monsters. That they always live in their minds where the Wild Things are.

Words

2009-10-19T11:44:00.002-05:00

Every dawn is an open door.

Every evening is a victory.

Back to our regularly scheduled worrying

2009-10-13T08:59:00.005-05:00

Or, as we note in trends around here, OCD.

I have to look for psychiatrists for Dubya. His doctor told us to check out which ones our insurance covers, then give her the list. She'll select one who does more than act as a highly degreed drug dealer for children, i.e., one who spends time on behavioral therapies without (or with, as necessary) pharmaceutical intervention. He's a tricky case because his tics preclude many pharmaceuticals for ADHD, and the OCD just complicates things even more.

And apparently, we're not a moment too soon. The OCD behaviors have jacked up big time around here lately. Luckily, he came by it honestly--through his mother, i.e., Me. As an experienced obsessive myself (compulsions? only really really healthy ones these days), I can at least help him out with managing the intrusive thoughts that he's complaining about, having developed some good management techniques over the years. My obsessiveness doesn't interfere with my life; it just makes me a pretty good editor.

Intrusive thoughts like what, you may ask? Well, let me tell ya. Before I got into writing this post, I googled "pediatric OCD" and came up with a list of standard behavioral features. In fact, these are so prevalent among this population that if the behaviors differ from this list, it's likely something else, not OCD.

Common obsessions and compulsions in the pediatric population include

--Things having to be arranged in a certain way
--Contamination-related behaviors, like handwashing
--What they call "aggressive obsessions," which can include intrusive thoughts related to violence or catastrophic events
--Obsessions about harm to oneself or others
--Need to confess

There are a few others, but the ones I listed above are Dubya's set. He exhibited the handwashing behaviors starting a couple of years ago. He's so obsessed with it that if he touches his nose, he thinks he has to wash his hands. He's requested that we put the hand soap he likes in the upstairs bathroom, too, so he can wash when he's up there, as well. In other words, he's seven, and he's got a soap preference. We've informed his teacher and asked her to limit the number of times he can go handwash. With the limitations we set on it, he's not gotten to the scab stage again, although he did when he was about five. He's very concerned about contamination, and it's not helping much right now that everyone's talking talking talking about handwashing because of the flu. Nevermind the fact that it probably transmits most often by air.

He's notorious for his arrangements of things and for flying off the handle when they get disarranged. But it's the "aggressive obsessions" that are most prominent. These come through by way of his confessional impulse, so several times a day, he will "confess" something. Usually, it's related to some accident he was involved in as the causative agent, sometimes years earlier. He'll worry that rather than its having been an accident, he did it on purpose, which is classic OCD. He'll "confess" to replaying terrifying scenes in his head from movies that he hasn't even seen--he's just heard about it from friends. His complaint is that he just can't stop playing it over and over, freaking himself out. If he gets a consequence for the most minor infraction, he'll worry it for days, saying many days or even weeks later, "I'm still worried that I did that." And then, there's the typical family SIFO catastrophic thinking that abounds.

I'd say he probably spends most of his waking hours replaying these things in his head and worrying about them. And lately, in the last few weeks, he "confesses" several times a day. Sometimes, it's intended as a real confession, some very minor transgression of a year or two vintage that he's got to get off his chest. Repeatedly. Other times, it's a "confession" of the replaying videos of violence or aggression in his head. Never, I add, any violent behavior on his part. And then, other times it's some accidental harm he's caused a friend or family member that's eating away at him, even if it happened literally years ago.

I have watched that child from infancy develop into this anxious and obsessive little person. As an obsessive person myself, I've recognized some of the clear signs along the way and have done my own version of cognitive behavioral therapy to show him that his compulsions aren't required for life to go on. But given his youth--only just turned seven--and these escalating manifestations, those signs have become flashing alarms. Must. Head. Off. OCD.

Starting with this list of psychiatrists. Not my favorite MD population, so I confess that it likely will become just another thing that I obsess about.

Hope and peace

2009-10-09T08:44:00.005-05:00

I had my evoked potentials testing yesterday in Houston (or, as we down folk here in Texas like to say, "H-town"). I likely won't know the results for at least a week, and either way--negative = no information/positive = diagnosis--I probably won't post about them because I'll need to process that for awhile.

The neurophys tech and I spent about 3 hours together. You can really get to know a person in three hours, especially when they're sticking electrodes all over you and applying repeat shocks to one of your major nerves. I do this wherever I go--hairdressers, parties, doctors, techs--I come away with people's life stories, freely told. Only recently, I read that this approach to human interaction might be a failsafe mechanism for people who can't socialize well. Whatever. I think it's just fascinating.

My tech's story ran along some familiar grooves, in that surprises popped up at every turn. No matter how much our minds want to box in someone at first sight, once you dig into their story, you find these surprises that don't fit the box. Three kids, an oldest daughter who wants to be a pediatric anesthesiologist, a middle daughter who wants to be a paleontologist ("And I can't even spell that!" the tech laughed when she told me), and a youngest daughter, age 4, who was her "menopause baby." She's only two years older than I am, the tech, and this of course led us into a lengthy discussion of how in the world she's been-there/done-that already with menopause.

And then, it turns out that she knows what Asperger's is. Her neighbor's daughter, age 11, has it. In the course of our conversation, I expressed how much we love our own son with Asperger's, what a great kid we think he is. She nodded, continuing her relentless and painful stimulation of my right posterior tibial nerve. That is a big freaking nerve.

There was a calendar on her wall. A family, the dad emerging from an airplane, the two daughters running to him, the mother following up behind. All extraordinarily tall people, and I realize it was the Obamas. I commented that Malia was probably already taller than I and not even a teenager yet. And my tech cut loose with one of her surprises: She had gone to the inauguration, taken her daughters, a niece, slept on a nephew's dining room table in DC, landed in Baltimore in 17 degree weather, met "real Eskimos, the only people there actually dressed for the weather." She had a tearful moment with Anderson Cooper, whom she worships for his good deeds, and she made him cry, too. She spoke with pride that her daughters witnessed this turning point, sadness that her mother and grandmother weren't there to see how so much had changed since they themselves were children in America.

And we bonded, big time, over reliving the excitement of that day. I completely forgot why I was there. She forgot why she was there. We talked for a long time about what it meant to us as parents, period. Not African-American parents or European-mutt-American parents, but just as parents. How, the decade we were born, 13 days before I was born, in fact, MLK was killed in a world riven with unrest, no peace. In one way, we were amazed that it had taken so long to come this far. In another way, we agreed, we were amazed at just how far we had come.

It was time for me to go, and she suddenly turned and indicated a poem hanging on her wall. I can't remember the poem--I can't remember much of anything anymore--but it was about acceptance, about seeing the love, accepting the life, grasping the positive with two hands and not letting go. "I get it," I told her after reading it, nodding. And she said to me, "I love it when I meet people like you. I can tell how much you love your son, how positive you are about him. It's people like that who keep the world moving forward, staying positive."

Thinking about it later, I pondered whether or not I really am a positive person, me, DMFP the cynic, the skeptic, the sarcastic-keep-you-at-arm's length cranky woman. And then I realized, it doesn't matter. As long as I am moving forward, staying positive, actually being positive, that's Me, being a positive person. Even if inside, I often feel like Frederick, the misanthropic older boyfriend in Hannah and Her Sisters.

We practically hugged goodbye, enjoying our mutual reminiscences about our president and that turning point in our country's history. This morning, I heard that he'd been awarded the Nobel Peace Prize. Already, in that room, our connection over him, about the way he marked a change for our nation, had left me feeling more at peace and more positive than I'd felt in a long time, reawakening the thrill of that cold day--and memories of Aretha Franklin's amazing hat. And the greatest surprise of all for me? My tech's name. I came to that room feeling trepidatious, tense, and self-involved. But when I walked in, it was there that I became acquainted with something I'd left behind lately: Hope. And thanks to Hope, I've got a renewed sense of peace, of moving forward, of grasping the positive with two hands, not ever letting go.

Da-isms

2009-10-07T08:46:00.003-05:00

Our three-year-old, Little Da, grows apace. Still wobbly on the potty training but excited as any man would be about peeing while standing up. Something about taking that aim, I guess. He also is an opinionated little fellow with many pithy observations to make about the world. Below, a few.

We're going to church. I have some new, fairly unoffensive black flats in ballet shoe style that I put on. I come downstairs and encounter Little, who stares at my feet for a good 10 seconds before pointing at my shoes. "What are those?" he asks in evident disbelief. "My shoes," I answer, stating the obvious. "Take them off," he orders. "I don't like them." It appears that I live with Jimmy Choo.

He's tautological, as many a three-year-old can be. Me: "Why did you get up from the table if you weren't finished eating?" Him: "Because I did." Me: "Why did you whack your brother with the sword?" Him: "Because I did hit him with it." Me: "Why did you turn the TV on when we said, 'no'?" Him: "Because I did turn it on." Sigh. I also live with George Mallory, the guy who climbed Mt. Everest "because it is there."

As with most youngest siblings and any self-respecting three-year-old, our Da takes offense easily. "He did hit me!" "Why did he hit you?" "Because he did!" "Did you hit him?" "Yes. With a sword!" And then there's, "(Dubya) did say that he is mad at me!" "Why is he mad at you?" "Because he did say he is!" And the assumed ability to admonish a parent who has told him "no," responding in low firm tones: "Don't say that to me, Mama!" We have intense discussions about the appropriateness of this last. I also appear to live with a blossoming, autocratic Prince of Wales.

Every morning at school, he dramatizes his arrival and my departure by throwing himself on the floor in a heap. It's all show now, little in the way of real tears or unhappiness. By all accounts and my own observation through the window, he's up in about 1.5 seconds, joining his "best buddies" at the home center. But sometimes, I'll pick him up from school, and this is when I encounter something I've never encountered before in my other children, boys who seem to lack the ability to be manipulative. Not Little Da. We get in the car, I buckle him in. "I did cwy today when you left me at school," he informs me. "I did cwy for a long time." I'd be heartbroken and concerned if I hadn't watched him through that window pick himself up off the floor and toddle over to his friends to play faster than it took me to type this. If his teachers didn't report that he has a great time the entire day. "You were sad?" I nevertheless say, sympathetically. "Yes," he responds, executing a perfect Little Rascals pout. "I was sad because I was sad and I did cwying." My very own little Russell Crowe, passionate outbursts and all.

The child would not, however, be a true member of the DMFPs if he didn't engage in catastrophic thinking related to That Which Can Eat You. Which is why, this morning, on the way to school, he informed me, apropos of nothing, "If a shark bites you, you have to go to the doctor." Now that's a true member of the DMFP clan.

No homeschooling here

2009-10-06T09:56:00.005-05:00

And honestly, I'm deeply relieved. As much as the idea--just the idea--appealed to me in one sense, in all other senses, I felt distractingly ambivalent. The idea of tucking into thematic units with TH, of reaching him and sparking his curiosity, having those great intense conversations with him that we enjoy so much--it was strongly attractive. Less attractive was my understanding of what it would otherwise entail: blocks of time that would push my own work into other blocks of time, collapse my work hours to the minimum, kick up my stress levels, possibly make me cranky and irritable. Less attractive also was the idea of removing him from the kids who now like him, where his greatest friend is, from his great school. Possibly least attractive was the possibility of having to explain to his two brothers why they couldn't homeschool, too.

Now, we don't have all this equivocation on our plate. Our district has a family liaison person who is available for families like us as a sounding board and all-around Delphic oracle. The Oracle suggested that we contact the school, ask for an ARD meeting, and see what sorts of ideas his teachers might have about ways to motivate him, reinforce his learning, and strengthen his interest.

Completely unfamiliar with just about everything related to this, I asked for the meeting, expecting not much out of it. What could a traditional public school do for a child who needs some one-on-one instruction, thematic and empirical learning experiences, whose best method of approach is through his limiting interest in all things nature and science? I fully expected that we'd come out of that meeting having experienced interaction with well-meaning, interested, engaged people but with no real options for addressing TH's fundamental problems.

And, as I learned this morning at the ungodly hour of 7:30 a.m., I was wrong. Yay!

This school--this remarkable, remarkable school where the staff have to get up way too early--has top-secret things we've never heard of. For example, for students like TH, we can arrange a program in which he spends time with a teacher who basically unschools him, letting him choose his area of interest, talk about it endlessly (she may not be aware of TH's version of "endless"), read about it as much as he likes, pursue it to its ends. There really is a program like that, and TH's language arts/math teacher is going to initiate it for him.

And then...there are all these areas in math and language arts where he sits in class as they review processes and then comes home completely clueless about said processes. It's a big problem for him, with his deficits in executive function. He just can't incorporate the social things going on around him, the answers flying from all over, the academic processes they're teaching, and completing his own work and then keep it all in his head. A huge concern for us.

The fix? A daily, midday "re-teach" session for a half hour in which he and his long-time special ed teacher review his language arts and math work, quietly solidify the processes of the day, and really lock in what he's supposed to be incorporating. It sounds like a perfect solution to me.

We went in with two issues of concern: motivation and process recall. We came out with both addressed. TH's oversized head is going to explode when he gets into that freewheeling, go-where-your-interests-take-you program. It's just his thing. And I'm hoping that the re-teaching reinforces his learning so that he's more comfortable and less frustrated about all the "noise" that may distract him in the traditional classroom.

I haven't felt this anxiety free about TH in weeks. In spite of what appears to be yet another impending viral infection (apparently, I live with the human equivalent of viral mixing vats, and no, handwashing/abundant use of hand sanitizer doesn't seem to help), my whole attitude is one of "WOOHOO!!!"

Now I've got to go make a donation to our district's education fund. We do it every year because of the supports TH receives. In Texas, those bastard socialists "robin hood" out half of our tax dollars to other, less-privileged districts, and we make up some of this deficit through donations to this fund, which supports staff salaries. Looks like we'll be digging into our pockets in gratitude once more. And we're glad to do it. I'm still just trying to wrap my tired little mind around the fact that they've resolved our problems for us yet again. And they sure do get up early to do it.

I'll leave this to speak for itself

2009-10-05T17:24:00.007-05:00

I was checking editing/writing ads, as usual (always looking out for gigs regular and sporadic), and came across this posting (which may be gone by the time you click; no worries--I've helpfully reproduced it in full below).

I'll let it speak for itself. As a long-time writer and editor, I've never before seen dictates like this for a piece. At least it's clear, in its woefully passively constructed way: There will be no effort at balance whatsoever. I'd assume based on previous experience that this post originated with Austin Woman Magazine, but it's a posting on San Francisco Craig's. Anyway...enjoy. And a question: Do ya think that this piece, once written, is gonna (snort) settle everything (snort) once and for all (sniggle)? Or is it the battle wail of failure?

The argument has been raging for way too long. People call each other names. Facts are obscured in lots of words, or mired in statistics. Every detail is argued about.

In spite of all that, mercury and other substances in vaccines can cause autism. Time to quietly sweep away all the questions. The research is available, you would not have to do research, except for possible fact-checking and not much of that (italics mine).

For those who are convinced that there is "no credible evidence" and that vaccines causing autism is "not possible" -- just don't reply to this ad. You can read the article when it comes out.

What's needed for this purpose is a writer who is convinced, or at least highly suspicious, that the answer is "yes." Must have patience, persistence and good team-player abilities. And have freelance time available, even if flexibility is necessary with regard to hours/days worked.

These are the days

2009-10-04T16:33:00.004-05:00

Carolyn Hax writes an advice column, and she's damned good at what she does. She doesn't dispense pop psych garbage, she doesn't offer to sell pamphlets, and she's not mired in some 1960s version of advice that has nothing to do with The Way We Live Now. She's intuitive, she's incisive, she's insightful. So, I read her any time she appears in my daily paper. A few days ago, she wrote this in response to a tragic letter from a recently widowed pregnant woman: "At any given time, any one of us is a day away from not recognizing life as we knew it just 24 hours before."

It's something I think about a lot, not because of morbid obsession (promise!) or even because of anxiety (pinkie swear!), but because it's how I remind myself of how much I have around me to appreciate right here, right now. I don't want some day to come when I regret not having known what I had.

And I was lying in TH's bed the other dimming evening, TH snuggled on one side of me, Little Da curled in my arms, Dubya quietly building yet another gargantuan Lego production with his dad on the floor by us, and I realized: I don't think I'll ever have another time in my life when I experience such abundant, uncomplicated love. Probably the most intense, open, and easily expressed love I will ever know.

Lucky, lucky me. Right? And if that weren't enough to make you seethe with jealousy, my three-year-old now puts himself down for naps.

Testing, testing, 1, 2, 3...ad infinitum

2009-09-30T17:03:00.006-05:00

Nausea set in hours before departure. As with so many events in my life, gastroenteritis decided to make an uninvited entrance. Nevertheless, I made it to Houston, Mr. DMFP driving, only to find that I'd booked reservations for us at the wrong hotel. Apparently, there are three Holiday Inns in the medical district. Three. We arrived at the one I hadn't booked, took about 15 minutes to find the one I had, and then had to walk by the window of a grossly obese man with a huge chest scar, which he was proudly flaunting, shirtless, from a chair in his ground-floor room. With the window wide open. Facing onto the parking lot. On purpose. We were sure of that. As if I weren't nauseated enough, buddy.

The Holiday Inn we were booked into does not have room service. It was 9 p.m. My vision had been to ameliorate the somberness of the occasion by making an "order in room service have some great quiet snuggling time without the kids with the A/C jacked up on high in the hotel room" kind of evening. Instead, it was a "no room service, A/C took awhile to kick in, damn I'm freaking tired and feel like I'm gonna throw up" kind of evening. Seriously. Story of my life. We punted, Mr. DMFP picking up the biggest serving of halibut I've ever seen from Pappadeaux. Me, a Sprite.

Then the people next door started screaming at each other. Loudly. I called the front desk at 11:30 p.m. He went to ask them to be quiet. Midnight, noises emanating from the room as though they were playing basketball in there. Called the desk again, and the poor beleaguered fellow sighed to me that they were going to ask these folks to leave tomorrow, hinting that they were troublemakers. Troublemakers, who, by the way, had left their children unattended in the room, hence the basketball game. Where were they, you ask? Apparently outside having a marathon smoking session.

Bad night, much intestinal discomfort. My only prayer was that I wouldn't hurl on Dr. Top MS Specialist at 9 a.m. the next morning. And I didn't.

The upshot of this entire adventure? He didn't say I'm crazy! (Yay!). He did say he'd talk to my home neuro about meds for pain and fatigue (Yay!). He's still reviewing my MRIs, so nothing definitive (yeah). And because of a certain little pesky list of criteria called the McDonald Criteria, I'll be going back to Houston for a last (I hope) round of tests, tests that measure the time it takes my central nervous system to respond to triggers (yep). Positives on these tests are highly indicative of MS. Negatives, not that much help either way. They don't rule anything out. (Sigh. Most testing for MS is like this.)

He talked a lot about PPMS, said that if there were drugs available for treatment right now, he'd call it that. But he wants to avoid doing that until he's got an objective clinical measure because once they slap that label on you, insurance won't have you. And I've already been rejected by private insurance for much less compelling reasons. Yes, I'm one of those people who has no choice thanks to "pre-existing conditions." All that can be done right now is what's being done: Meds for the symptoms, to alleviate distracting pain and fatigue.

And, as has been the case since October 2007...testing, testing, testing. Seemingly ad infinitum.

We now take you back to our regularly scheduled parenting blog. Thanks to everyone for their well wishes, thoughts, and prayers. It's a notoriously frustrating and slow road, this one.