This afternoon we have another I.E.P. meeting scheduled with Porter’s school to determine what he’ll be doing school-wise this fall. We don’t expect much will come out of the meeting except some posturing on both sides. They think he should start kindergarten, primarily because they don’t want to pay for another year of special education We don’t want him to start kindergarten until he’s six, since studies show that boys do better when they start school later. He already has one handicap, so we want to give him every chance to succeed we can, and having him wait to start kindergarten seems an obvious decision. The school district has said he could simply repeat kindergarten, but we want him to have individualized teaching that addresses the areas in which he’s not yet caught up to his peers and they continue to not offer anything individualized for Porter whatsoever, despite the fact that federal laws says they are bound to provide an “appropriate education.” And while reasonable people might differ as to what that means, it certainly does not mean just offering whatever general class they happen to have and nothing else, which is literally all they’ve done for the last two and half years. Not once have the suggested anything actually individualized, despite the fact that the meeting we’re going to will discuss his “Individualized Education Plan.” I’ll let everybody know the outcome, but don’t expect much. I know I don’t. This is just such a frustratingly maddening process that it’s very hard not to be disheartened. I believe that for the most part his teachers want him to do well and do what they can to help him, but it’s getting harder and harder to believe that the school district and county through the administrators and official representatives have any real concern for anything Porter except how it effects their budgets. And that may be the most depressing thing of all.
August 3, 2006
July 19, 2006
Sarah and I both got new shoes for our trip and they were absolutely perfect. I wasn’t going to get any new shoes, and in fact at first I thought them ugly. Plus, I never, ever where anything even like sandals so they held no appeal for me. But once I saw them at REI and tried them on, I was hooked. And my new Keens have proven wonderful for all sorts of things. They’re cool, waterproof and quite possibly the most comfortable shoes I’ve ever worn, especially without socks. They were great in Hawaii because they weren’t too hot, we could walk through streams and into the ocean without worrying about getting them wet and we didn’t have to pack socks which made it easier for us to pack light. Get yourself a pair today.
The popular Keen Newports are the ones we wore on all our hikes on Kauai.
July 3, 2006
Sarah and I saw Al Gore’s new documentary film, An Inconvenient Truth, this afternoon. Now we love documentary films already and we already knew global warming was a real phenomenon so we went into it already fairly receptive to the film’s message. But it was quite well done and it was nice to see Al Gore not stiff and dispassionate as I remember him from 2000. This is obviously a strong passion for Gore and essentially it’s simply a more effects driven version of a slide show he’s been giving for many years.
The real shame of it is that the people who most need to see this film won’t be bothered to have their world clouded by facts. It’s too easy to pretend it’s all partisan politics and therefore dismiss it. That’s what the pinhead reviewer for the New York Post did, and it’s almost painful read the ignorance in his words. his malevelolence — and indeed all so-called critics of global warming — were made again to look like flat-earthers when a group of America’s top climate scientists endorsed the accuracy of the film’s science. Most reviews, though, have been postitive. According to Rotten Tomatoes, 92% of reviews for the film were favorable.
Naturally Bush & Co. have already stated for the record they have no plans to see the film, not that there’s any surprise in that news. One thing our current administration excels at is, in the words of Upton Sinclair — and used to good effect in the film — is “it is difficult to get a man to understand something when his salary depends upon his not understanding it.” For me one of the most startling facts was that even though in a sample of 926 scientific papers about global warming found not one who disagreed with it, 53% of news reports about global warming said the theory was unsettled and controversial. The only confusion has been manufactured by those who might most benefit from it. And even with so clear and unambiguous a case for it being made by An Inconvenient Truth, the status quo’s spin machine is doing whatever in can to cast doubt at the great expense of all of us.
If you do go see it, let us know what you thought.
May 29, 2006
Happy Memorial Day everybody. We’re in Tahoe today and I’m writing this late Saturday night after the rest of the family has gone to bed. As most of you know, I grew up in a small town in Pennsylvania of only around 6,000 people, Shillington. Until I was five, we lived in an even smaller town right next to mine, which is where both my grandmothers lived and where my parents grew up. There’s still less than 3,000 people there in Mohnton today as compared to when I grew up. It’s downright bustling these days, but in my day there couldn’t have been more than 1,500 people, maybe less. Anyway, throughout junior high and high school every Memorial Day there was a ceremony in each town’s main cemetery to honor the town’s veterans who gave their lives. I was a band geek back then and the junior high and high school bands alternated each year playing at either the Shillington or Mohnton cemeteries. One year we’d play in Shillington and the next in Mohnton. It was a very solemn affair and was generally pretty well-attended with most of the town’s elderly residents showing up. They’d read a roll call of veterans from each town and then a trumpeter would play taps. It was also a pretty long list considering how few people lived in each town. I don’t know if they still do that anymore, but I tend to doubt it.
Memorial Day was originally called Decoration Day and originated after the Civil War. I have a relative on the Pennsylvania Monument at Gettysburg. I remember my mother showing it to me when we visited the battlefield when I was little, probably no more than ten. It wasn’t until World War 1 that it was expanded to include any veteran who lost his life in battle. In fact, the name “Memorial Day” didn’t even become official until 1967. In 1971, its day of observance was moved from May 30 to the last Monday in May. You can read more about it at Wikipedia or at Memorial Day History.
The reason I bring this up, apart from the usual joy of ranting, is because it seems to me very few, if any, of our holidays have retained their original meanings into the present. And at the risk of sounding like every generation as they hit middle age, it seems like this has occurred in the past several decades. I can’t say when exactly this happened, but name a holiday that’s not now simply either an excuse to drink, a three-day weekend, a commercialized nightmare, or all three. And before you call me a hypocrite because I’m not at the cemetery today either, I accept that I’m a part of this loss of meaning, too. Our entire society is set up to cater to the needs of big business and profit, not the search for meaning in our existence. I, too, am distracted by the myriad diversions available to us. Perhaps the only difference is that I recognize what’s going on, which isn’t very impressive, I’ll admit. But I’ve come to understand that in almost every field of human endeavor, in everything we’re supposed to stand for and believe in, there lies a hidden reality that shatters almost every illusion we’re taught to cherish and revere. And I think more and more people are coming to the same conclusion, which is in part why our holidays have lost all meaning. In the case of Memorial Day, how can we celebrate the loss of life so cavalierly while so may are still dying around the world for no good reason whatsoever.
To illustrate this point, on the drive up here on Friday we passed a car driven by a marine with the following bumper sticker on the back of his car: “Except for ending Slavery, Fascism, Nazism, Communism, War has never solved anything.” Okay, I’m sure he meant well. I don’t want to pick on this guy specifically, just the sentiment he chose to ignorantly put on his car. Let’s take them one at a time. 1. War ended slavery. I assume he’s talking about the Civil War here, in which the issue was can a state secede from the union. Slavery was certainly important, but it wasn’t the reason that the war began. The Emancipation Proclamation only freed slaves in the southern states and even after the 13th Amendment supposedly freed all slaves, there were still many, many institutionalized impediments to true equality. Jim Crow didn’t just go away. But let’s look at the larger picture. Has slavery really been ended in the world? Absolutely not. There are real slaves and de facto slaves all over the world, and not just in isolated places but almost everywhere you look. 2. War ended fascism. I don’t even need to hold up a mirror to our own government for this one, there are countless fascist regimes throughout the world, and many of them enjoy our government’s official support. To think this form of organized merger of capitalism and government went away is to be hopelessly naive. 3. War ended Nazism. Nazism is simply a particular form of fascism and it’s alive and well all over the map. But even if that weren’t so, there are numerous neo-Nazi organizations throughout the world. This racist form of government has hardly disappeared. 4. War ended communism. Again, I’m assuming the slogan is referring to the fall of the USSR, which war had nothing to do with. Perhaps the USSR’s war in Afghanistan helped bring about their demise, but that’s not the same as a war whose goal is to end communism. But even setting aside that argument, there are still many communist countries left in the world including China, North Korea and Cuba, to name a few prominent examples. So however sincere this right-wing rhetoric, it simply isn’t true. We may want to believe it is or perhaps it makes people feel better to think it’s true, but burying our heads in the sand to what’s going on all around us would make us the laughingstock of the world, if everybody weren’t so damned afraid of us. Because it’s that ostrich-like behavior that has allowed our current foreign policies that so understandably frighten the rest of the world. We don’t have to worry anymore about defending the rest of the world from bullies, we are the bully.
So this got me thinking. I spend the majority of almost every day with Porter and Alice. How do I avoid passing on to them my cynicism and hopelessness about the world without screwing them up so badly they’ll spend the rest of their lives in therapy, blaming me for their unhappiness. But by the same token how can I also lie to them about how the world really operates. Don’t I owe it to them to pass on to them what has taken me a lifetime to discover, bit by bit, piece by depressing piece? Don’t I owe it to them to always be honest and truthful? Yet we lie to our kids all the time, from Santa Claus to the tooth fairy to “don’t worry this won’t hurt a bit.” Shouldn’t they enjoy the same innocence we did? I certainly don’t want them to grow up too quickly but I also don’t want them to be as naive as I was when I was a young adult. Damn, this parenting stuff is hard.
But back to Memorial Day. In the end it seems wrong not to acknowledge the sacrifice that so many people made, even if in many, if not all, of the wars ever fought the romantic and egalitarian purposes that were used to sell the war to the people who fought and died in them was not true. They shouldn’t be punished for believing lies that were told to them by people who weren’t supposed to lie to them. They performed the duties they believed to be virtuous. So we should honor them, but we should also take this opportunity to address the realities of human history so that we will not continue to be doomed to repeat it in an endless cycle of the rich getting richer and the poor just dying.
May 28, 2006
The UK Telegraph has a story today that a new American study appears to confirm findings by Dr. Andrew Wakefield in 1998, and others in later years that a link exists between the MMR vaccine and autism. A government study last years was supposedly unable to reproduce Dr. Wakefield’s findings, but then our government doesn’t want to find a link so virtually any study by our government is tainted, in my opinion, especially given their intimate ties to big Pharma.
So it likewise comes as no surprise that this new American study has been reported first in the British press rather than our own, since the mainstream media is likewise in lockstep with and beholden to big business.
From the article:
American researchers have revealed that 85 per cent of samples taken from autistic children with bowel disorders contain the virus. The strain is the same as the one used in the measles, mumps and rubella triple vaccine.
The findings will spark fresh concern about MMR, because they back theories of a causal link between the jab, autism and painful gut disorders suffered by a number of autistic children.
One theory is that the virus passes through the gut, causing damage, and into the bloodstream, from where it is able to attack the brain.
Research to be presented this week in Montreal, Canada, provides fresh evidence that the measles virus is present in the guts of autistic children. Dr Stephen Walker, of the Wake Forest University School of Medicine, North Carolina, studied children with regressive autism and bowel disease. “Of the handful of results we have in so far, all are vaccine strain,” he said.
On a side note, almost every time I post information from one of these growing number of studies that support the vaccine or thimersol link, some so-called private individual will post a comment trying to discredit the findings, whoever did the study, or both. Perhaps some of these are legitimate, but I can’t for the life me understand why an individual would devote himself, unasked and unpaid, to defend big business and defend deceptive practices by our own medical community. Usually they have a blog set up for no other purpose than to discredit this research and they’ll be some blather about just wanting to set the record straight or not have false information clouding the dabate. Please, pull the other one and see what comes out. I don’t trust them, whoever they really are. If they really cared about this issue and the kids effected by it, these blogs would also include efforts to get at a different cause, not just to discredit the one they don’t like. If the mercury hypothosis is wrong, then open testing and research should reveal that in due course. Seeking to avoid even addressing it — which is the net results of such tactics — does nothing to instill any confidence in the people entrusted with the health of my children. So please, if you’re one of those people reading this, please keep your comments and your agenda to yourself and leave me alone to express my opinions. If you’re a normal human being, by all means I’d love to hear from you.
May 1, 2006
Last week Porter came home with a Lego airplane. He was very excited to have me build it for him. He watched excitedly as I put each piece together. And to be honest, I had fun, too. I had tons of Legos as a kid and built all kinds of things. But the Lego of today is very different than in my day, back when the dinosaurs still roamed the Earth. My old legos were pretty plain affairs and as such could be used to make virtually anything I could imagine. Today’s Legos all are pretty specifically designed to make just one thing. Taking the airplane as an example, a large majority of the pieces included have but one function and it’s very hard to conceive of what else you could use them for except to build this plane. It’s like it’s a paint-by-number set instead of just paints that could be used to create anything. And that’s the problem, I think. Why are toy company’s making toys that no longer encourage creativity and imagination? As I look around our toy-strewn house, many, many of the toys have one purpose and can do little else. Why? Are unimaginative kids easier to control? Do they do better on assembly lines or in offices where their job is to simply file the correct TPS report? I know I’m becoming a curmudgeon (okay, I already am — beat you to it, Karen) but come on, whatever happened to Lincoln Logs, Erector Sets, Lite Brite, Legos, blocks, Tinker Toys, etc.? I see some toys like them at high end toy shops but certainly not at Toys R Us and their mainstream ilk where I presume the majority of toys are purchased. So what’s going on here? I’ve got a few guesses but they’re pretty political and will further solidify my reputation as a conspiracy nut job. So what do those of you out there think?
The box Porter’s Lego airplane came in.
The completed airplane.
Porter lifting it up, getting ready for take off.
Cleared for take off.
Getting another fake smile, although this one’s much better than the diesel smile.
Oh, and before I forget, don’t get me started on quality of workmanship. I remember Lego pieces fitting pretty tightly together so you had to really work at getting them apart sometimes. This plane falls apart without the slighest provocation. A stiff breeze and it’s in pieces. The shoddy workmanship is just appaling, especially considering how expensive these things are. Porter’s got better than average fine motor skills and he’s breaking it apart accidently constantly. The doors for example, are so precarious that it’s more common for them to fall off when opening or closing them than not. How did that one flaw alone get off the drawing board or at least past the testing stage, let alone all the other weak points in its design? Plus this just runs contrary to common sense. You’d think that if it was designed to be like a puzzle, that is to be build in one shape and that’s it, that it would at least stay together once it is built, wouldn’t you?
April 11, 2006
The other day while we were waiting for Porter’s school bus to come, an official vehicle, in this case a truck belonging to the local Municipal Water District, was parked in spot where the bus comes. On the back of the truck, was the bumper sticker pictured below.
Not just safety, but “safety” in quotation marks! “Safety” — why not? What the hell does that even mean? Does it mean “oh, what the hell, I guess we’ll be safe. After all, why not? What the heck.” It sure seems pretty noncommittal, doesn’t it? Like we’ll try to be safe if we can be bothered. Why not? It’s a slogan that doesn’t really fill me with a great deal of confidence.
March 24, 2006
I know I promised to keep politics out of the family blog, but this is really about children and their politics and it’s pretty funny, too, in its way. It’s about a study that began twenty years ago whose findings were just published last week. Here’s how the Toronto Star report on the study begins:
Remember the whiny, insecure kid in nursery school, the one who always thought everyone was out to get him, and was always running to the teacher with complaints? Chances are he grew up to be a conservative.
Now that got my attention. According to the article, this is at least the second such study to draw the same conclusion. The earlier study, done at Standford in 2003, was savagely attacked by the right. I guess nobody likes be called whiny. And of course, nobody does savage attacking like the right, either. Can you say “Swift Boat?” Anyway the study was done at — where else — Berkeley, which will also doom it to not be taken seriously since having been done at a supposedly “liberal” institution means it must have been biased, especially if you don’t like the results. But as the article points out, “it’s unlikely that 3- and 4-year-olds would have had much idea about their political leanings.” The original study was about personality and wasn’t specifically looking for political information. In the 1960s, about 100 nursery school kids were surveyed. The article continues.
A few decades later, [the author of the study] followed up with more surveys, looking again at personality, and this time at politics, too. The whiny kids tended to grow up conservative, and turned into rigid young adults who hewed closely to traditional gender roles and were uncomfortable with ambiguity.
The confident kids turned out liberal and were still hanging loose, turning into bright, non-conforming adults with wide interests. The girls were still outgoing, but the young men tended to turn a little introspective.
An interesting question I have about all this is what role parenting methods may have played in turning our nation more conservative? Many prominent parenting “experts” (a loaded term if ever there was one) like Dr. Spock, T. Berry Brazelton and many others advocated techniques of letting the baby “cry it out” over the last several decades. And co-sleeping, while common in ancient times and up to the present in most of the rest of the world, is often equated here as almost criminal and morally reprehensible, although happily that’s finally starting to change. Even Dr. Sears has reversed his position on this one. Naturally, we’re in the snuggle camp. We believe it’s impossible to snuggle too much. Almost all, if not all, of the arguments against co-sleeping have been shown to be nothing but puritanical prejudice dressed up as science to justify those biases. And there are significant benefits, of course, both for the children and the parents. And one of the big ones is that not abandoning your child to scream in the next room to “teach him to be independent” fills your child with the idea that he is not alone and is loved, which leads to being a confident person. And now we know what raising a confident child leads to. So perhaps the best thing we can all do to insure a democratic future is to snuggle with our kids. I know I’m going to do my part. How about you?
March 23, 2006
Thanks to my mother-in-law Ruthanne for this one. Today’s Contra Costa Times, a small local paper in the East Bay, had an article today by Sandy Kleffman about a new study conducted at UC Davis, near Sacramento, that appears to show a strong link between mercury — in the vaccine preservative thimerosal — and immune system dysfunction in mice. No doubt for fear of being ostracized by their colleagues and the medical establishment at large for publishing the wrong conclusions, the authors of the study were careful to point out that their findings did not conclusively show any link and that many questions remain to be answered. But it was nice to see yet another study that at least doesn’t discount that link outright. Once enough of these small victories pile up, it will become increasingly difficult for the government and medical establishment to keep stonewalling and lying about this issue.
The article also mentioned offhandedly something I didn’t realize, which is thimerosal is still in some “ear drops, nose drops, skin creams and cosmetics, as well as adult diphtheria and tetanus vaccines.” I’m going to have to read those labels more carefully.
March 21, 2006
In the last few days I’ve seen two different studies that appear to further confirm the link between mercury and autism. One involved environmental mercury and the other was strictly thimerosal in vaccines. One was reported in the newsletter of one of the advocacy groups I subscribe to and the other I got from Kit, my librarian sister-in-law.
The first was reported in Health Sentinel online. It’s a new study by the Geiers, who have previously published studies surrounding this question and have been vilified for their efforts by the most obvious and hideous smear campaigns imaginable. Every time they publish results, the medical community spin machine goes into overdrive trying to discredit them with everything from “they’re not the right kind of scientists” to it wasn’t published in a “reputable” journal. Frankly, the fact that they’re attacked so unceasingly and vehemently lends them a certain credence, in my mind. Me thinks the medical establishment doth protest too much.
From the Health Sentinel report:
A study published in the spring edition of Journal of American Physicians and Surgeons, examines the connection between vaccines that contain thimerosal and autism. The authors of the study are David A. Geier, B.A. and Mark R. Geier, M.D., Ph.D. According to the authors the study was thoroughly reviewed prior to publication. “Our manuscript underwent blinded peer-review by three different peer-reviewers including a bio-statistician/epidemiologist prior to its publication.”
Notice the attention paid to its peer-review prior to publication. That’s there to address the smear campaign from the get go. You won’t see that sort of mention from other published studies, because they’re not as likely to be attacked as anything the Geier’s publish.
The study itself confirms the same thing as their previous ones, which is that there is a strong link between the preservative thimerosal and the risk of autism. At this point it’s been pretty well documented a number of different ways, but the medical establishment refuses to accept this or any study that reaches such a conclusion, so much so that if you’re not paying attention to this as closely we are, since we have a vested interest in it, you could be forgiven for believing the opposite is true.
But read the whole thing, there’s some very interesting historical perspective given in the article and in particular, this little nugget:
A 1948 article in the journal Pediatrics opens with, “Inflammatory reactions involving various parts of the nervous system following injections or various sera or vaccines have long been known”. In that paper they discuss 15 instances in children at Boston Children’s Hospital that developed “acute cerebral symptoms within a period of hours after administration of pertussis vaccine.”
If you missed the significance of that, allow me to hit you over the head with it. In 1948, a leading pediatrics journal reported that doctors were already seeing a link between vaccines and developmental problems in children. That’s only eighteen years after thimerosal was first used in vaccines and less than ten since autism had been identified. But our medical establishment still insists no such link exists. The further along this path I go, the harder it is to place any faith whatsoever in anything doctors say. They’re just as human as you and I, and it appears in many cases they’re just as stubborn and ignorant, as well. If so many are so willing to lie and cover up responsibility for this travesty, how can I know when they are telling the truth? Are they even capable of it anymore or are their souls so rotted that they no longer can tell the difference?
The other study is from Texas, where they studied environmental mercury and also found a strong link between mercury and autism. In fact, they found it was 61% more likely that a child would become autistic for every half-ton of additional mercury released into the environment. Sheesh. That certainly supports the Bay Area problem, which has a higher incidence of autism than most of the rest of the country. The San Francisco Bay Area, not coincidentally, was once home to the world’s largest mercury mine and if you look at map of abandoned mercury mines, the area is literally thick with them.
Here’s the abstract from the Texas study:
Health & Place 12:2, 203-9 (2006)
Environmental mercury release, special education rates, and autism disorder: an ecological study of Texas.
Palmer, RF, Blanchard, S, Stein, Z, Mandell, D and Miller, C
University of Texas Health Science Center, San Antonio Department of Family and Community Medicine, 7703 Floyd Curl Drive, San Antonio, Texas 78229-3900, USA. firstname.lastname@example.org
The association between environmentally released mercury, special education and autism rates in Texas was investigated using data from the Texas Education Department and the United States Environmental Protection Agency. A Poisson regression analysis adjusted for school district population size, economic and demographic factors was used. There was a significant increase in the rates of special education students and autism rates associated with increases in environmentally released mercury. On average, for each 1,000 lb of environmentally released mercury, there was a 43% increase in the rate of special education services and a 61% increase in the rate of autism. The association between environmentally released mercury and special education rates were fully mediated by increased autism rates. This ecological study suggests the need for further research regarding the association between environmentally released mercury and developmental disorders such as autism. These results have implications for policy planning and cost analysis.
If you want to read more about it, here is an article at Science Direct.
March 20, 2006
Just got back from seeing “V for Vendetta,” which I’d been fairly itching to see. I read the graphic novel that it’s based on — by Alan Moore — when it first came out in the 1980s and then again a few weeks ago. It was originally written as an anti-Thatcher government cautionary tale (Moore is British) that prophesized what could happen to a government that continues marching to the right. He also wrote the Watchmen, League of Extraordinary Gentlemen, and From Hell, among many, many others. I especially loved his Swamp Thing comics in the early 1980s (still some of the best comics writing ever). But he disowned the film, so I had some reservations but I also knew that Moore has a reputation for being very cranky, so I didn’t let that sway me too much.
Frankly, I thought the Wachowski brothers did an excellent job with the adaptation. They simplified some sub-plots, removed characters that didn’t add much, but seemed to have kept most of what I remember being important to the story. They added some things, such as a history of Guy Fawkes which I though made sense, since Americans don’t know their own history, much less that of the English. Hugo Weaving’s wonderful voice (he was Mr. Smith in the Matrix films) struck just the right note, I thought. Natalie Portman’s performance was also very good, and her accent passable although she did say “shit” instead of “shite” once. Of course, I’m no expert on accents but it was certainly better than Kevin Costner’s Robin Hood. But there were a few smaller parts that I thought were quite excellent and deserved recognition, and in particular Stephen Rea, Stephen Fry and Ben Miles (from Coupling).
Visually is where the movie really shines, and I thought their use of symbolism worked well. I’m sure conservative types will find fault with a lot of the politics in the movie, which is to be expected, but if it gets people thinking and talking about controversial subjects then that’s all that really matters in my mind. I, naturally, liked the provocative nature of the politics portrayed in the movie, but then I’m a nutball. I believe that much it had to say is relevant today and should alarm us and give us pause. Otherwise, that could be our future. It doesn’t seem all that implausible, and perhaps that’s the most frightening thing of all. But whether you agree with its message or not, it’s great movie-making and storytelling. As such, it deserves an audience. I’ve done part, how about you? Let me know what you thought of it.
The National Autism Association (NAA) is calling it a “Landmark Lieberman Letter” with a headline that reads “Congress Speaks Out on Thimerosal.” I know they’re trying to put a positive spin on every small gain but at some point they need a little perspective. What were they talking about? Senator Joseph Lieberman and seven other Congresspersons sent a letter to David A. Schwartz, MD, the new director of the National Institute of Environmental Health Sciences “urging” (you know, asking) him to look into the thimerosal/autism link. How bold, a letter. Now that’s decisive leadership. Yawn.
They also lauded the Senator for language inserted into a Labor/HHS appropriations bill “recommending a committee be formed to evaluate the need for independent research of the Vaccine Safety Datalink, which has never been fully accessed by anyone outside the CDC.” Now I’m sure that’s a necessary step, but I have a hard time getting worked up over them “recommending a committee be formed.” Ooo, a committee. That’s telling ‘em. And actually, it’s just a recommendation to form a committee, which just as easily can — and probably will — be ignored. I realize that it will be years, if not decades, before the truth comes out, whatever it is, and I think that’s what pisses me off the most. We won’t find out anything meaningful until all the people involved at the CDC and other agencies have either retired or passed away lest they have to face the responsibility of poisoning an entire generation of children. If they did nothing wrong, why not open it up to scrutiny so the world can see they’ve done no harm? I think we all know the answer to that question, especially them, and it’s their lack of willingness to come clean that makes them evil, in my opinion. I don’t believe — or at least I don’t want to believe — that the government’s medical doctors and scientists intentionally caused the autism epidemic, but their continued unwillingness to admit any mistake and honestly face not only the cause, but also what to do next, makes their earlier mistakes, however inadvertent, more and more malevolent. Instead of protecting the public they’ve spent their efforts protecting themselves and are losing what’s left of their souls in the process.
From the NAA press release:
A letter made public this week from eight members of the House and Senate to the National Institute of Environmental Health Sciences (NIEHS) is making headlines, and with good reason. After years of hard work from parents across the country to focus Congressional attention on the thimerosal/autism link, this may finally become a reality.
The offices of Senator Joseph Lieberman and several other lawmakers managed to pass important language as part of a Labor/HHS appropriations bill recommending a committee be formed to evaluate the need for independent research of the Vaccine Safety Datalink, which has never been fully accessed by anyone outside the CDC. A growing number of parents are convinced that the CDC will never be able to appropriately research the VSD because of the agency’s conflicts of interest and possible culpability in allowing an entire generation of children to be overexposed to mercury through vaccines.
The letter, addressed to NIEHS director, Dr. David Schwartz, is forceful in urging that the NIEHS direct its efforts towards finding answers for the one in 166 children now diagnosed with autism. This is encouraging news for us all, and a testament to the fact that Congress is listening to us. We will all need to be keeping watch on this situation to see that it receives and maintains the attention it deserves. The full letter is available here: http://www.a-champ.org/Congressionalletter2-22-06.html
I’m starting to think the NAA, and perhaps many of the autism advocacy groups, have been around long enough that they’re becoming part of the establishment they originally sought to hold accountable. One of the things I took away from reading David Kirby’s Evidence of Harm was what grassroots, rebel, in-your-face the original advocacy groups made up of pissed-off parents of autistic kids demanding answers really were. But it’s hard for anyone to sustain that level of rebellion for very long. That’s why dissidence rarely succeeds, it doesn’t have the resources and wherewithal that the rich and powerful enjoy. That’s why most movements for social or political change usually just peter out as their members age and give up. And I’m beginning to believe that’s what is happening here. I’m sure any of the advocacy bigwigs who read this would be aghast, or worse, at my questioning their commitment, especially the ones who were in this fight from beginning. But it’s not their commitment to the fight, it’s what has happened to the fight itself that I see as the problem. This is, obviously, just one observer’s point of view, and one who is no doubt somewhat myopic since we came to the fight so late. But what I now see is slick websites, polished press releases with their own spin, for chrissakes, taking official positions on issues, essentially playing the same political game that the government is and in some cases even using underhanded propaganda for sympathy, support and money. It’s obvious nobody can agree on what to do or the best approach to do it since there are so many organizations. This, of course, works against a real solution since it dilutes what small resources there are, both in terms of people and money. I’m not saying anybody sold out, but I am skeptical whenever an organization for change begins behaving like the bureaucracy it’s trying to change.
March 16, 2006
Sarah sent me this piece a couple of weeks ago and while she’d told me about it, I hadn’t had a chance to watch the video or read the actual story. By now, perhaps, you’ve already seen it but since I’ve been asked to write an Op-Ed piece for our newspaper about it, I thought I’d share it with everybody just in case some of you hadn’t heard about it or seen it. The story is about Jason McElwain, a 17-year old high school senior from Greece Athena High School near Rochester, New York. J-Mac, as he’s affectionately known, has Autism Spectrum Disorder though he’s been characterized as high-functioning. For the past four years, he’s been the team manager of the high school basketball team, which means he fetches towels and water and tries to improve team morale. On the last game of his high school career, his coach had him suit up for the game — not with an eye toward having him play — but just to give him a chance to see what it was like to be in uniform and feel like a player. Toward the end of the game they found themselves up 16 points and the coach changed his mind and decided to put J-Mac in the game with just four minutes left on the clock. He took his first shot, a long one from the corner of the court — missed. A second shot from beyond the free throw line also missed. The coach was starting question his decision and praying that he’d at least make a basket. But then J-Mac drained a three-pointer. The crowd went wild. Then he hit another three-point shot … and then a third. The crowd and his team grew increasingly excited and both his teammates and the audience were jumping up and down enthusiastically. By the time the game was over he’d scored 20 points (6 3-pointers, tying a team record, incidentally, and 1 2-point basket), including hitting his last three-pointer at the buzzer.
It’s pretty inspiring to watch and as many people have commented, if you didn’t see it with your own eyes, you might believe some Hollywood screenwriter had made the whole thing up. His story’s been compared to the Notre Dame football movie, Rudy, but that’s about a kid who was simply too small to play college football. To my mind, J-Mac had a lot more to overcome than Rudy (not to take anything away from his story) because being autistic is not really comparable to just being too small but having all your other faculties intact. It got autism quite a lot of attention, which is great, and believe or not Hollywood really is interested in filming his story. Apparently, his family has been approached by around twenty-five production companies including Disney, Warner brothers and some independent documentary filmmakers. Here’s the CBS story on J-Mac. But to get the real emotion of the story, watch the video on Google Video.
I searched around today about the story and there hasn’t been much follow up but it will certainly be interesting to see what comes of it. Almost anything that puts autism front and center in the national press is a good thing because we could certainly use more awareness about it despite it being an epidemic. Surprisingly, however, I did stumble upon several forums where scores of comments had been left, most of them unsurprisingly positive. What shocked me a little, however, was that there were any negative comments, but there were. Before you read on here, be sure to watch the video first and see if you can find anything negative to say about this story.
The negative comments seemed to fall into three broad categories. First, some people said “so what” dismissing it as no big deal, though in some cases the language was a bit more blue. Second, some people remarked that he sounded and looked “retarded” with a “high forehead.” And third, several commenters responded to others trying to defend J-Mac by saying things like “don’t pretend you’d want an autistic kid” and “would you want him to be the father of your kids.” Now I know most, if not all, of these comments are the products of ignorance and immaturity. When you see how they’re written and as you watch the dialogs unfold you quickly realize that they are from people who find daytime talk shows too intellectually challenging. I’m not really trying to be flippant here, I really was quite amazed by how low the level of literacy and discourse was. I’m pretty sure many of them were teenagers, but that could just be my own bias.
But I was also struck by how utterly insensitive many of the remarks were and the ignorance that was so amply demonstrated about what autism is and how it affects people. To me that was remarkable. Obviously, we knew little about it before Porter was diagnosed and we, of course, have since educated ourselves about it as only two anal-retentive geeks could, by reading everything we could get our hands on. But even what little we did know was several levels above the discourse I read today. So what I now wonder is whether or not this is due to the media’s utter lack of appropriately covering this epidemic on a regular and continuing basis. Don’t get me wrong, I’m grateful for what coverage there is but you’d think that a disease that afflicts one in every 166 people might command a bit more attention than it currently does. Or is it simply a more pervasive problem that people are becoming more and more happily ignorant. Certainly very little in our society celebrates intelligence: not sports, not entertainment, not television, not politics and not our educational system. Is this the effect that paying so little attention to schooling has produced in the last twenty or thirty years. Or have I simply become the next generation of curmudgeons complaining about these damn kids today? How can one even tell the difference in a culture that so glorifies stupidity?
Now I realize I’ve drifted off point here, that’s one of the dangers of writing extemporaneously and thinking in tangents, which is how my mind tends to operate. Anyway, I’ve got to figure out how to attack this Op-Ed piece since it’s a great opportunity to educate people about autism. I think this story does highlight some very positive aspects of autism that bear reinforcing. For example, it clearly shows that many autistic people can create social bonds and be productive members of society with the proper support and guidance. That this kid had a basketball coach willing to give him a chance speaks volumes about how important those relationships are. That he was able to maintain friendships with jocks also says something important about how people behave when faced with real situations rather than as stereotypes. I certainly have a prejudice against many jocks, and I was prepared to believe that such a group would have a great deal of difficulty accepting an autistic kid without making fun of him. Of course, he’d been in the position of team manager for four years. It would be interesting to know how long it took before they accepted him. High school boys are not exactly known for their compassion and understanding, at least not when I was in high school and I doubt much has changed on that score. Anyway, take a look at the story, please. Watch the video. What do you think about it? What do you think I should emphasize about autism and this story for my op-ed piece?
March 13, 2006
Our local Safeway bites the big one. They can’t seem to keep stuff I want to buy in stock. Frankly, I don’t think I should have to time my visits to the store to coincide with their deliveries. If they’re out of something once in a while, here and there, that’s no problem. But this is downright endemic. It happens constantly. It’s not uncommon for them to be out of half the items I’m looking for, and occasionally more. On top of that, they’ve stopped carrying many of my staples such as Tejava and Cape Cod Potato Chips. I’ve been complaining about this to Sarah for months, if not longer. I know you’re thinking “no, not you complaining, Jay, that would never happen.” Alright, simmer down people, I never said I was perfekt. Anyway, Sarah’s been encouraging me to try an independent grocery store in our neighborhood and on Friday, I finally took the plunge. Scotty’s Market is quite a bit smaller than Safeway, but happily had almost all the things I was looking for and their employees were a good deal friendlier, to boot. I believe they’ll be seeing a lot of more of me there from now on.
Alice at Scotty’s market.
She seems happy to be in the new grocery store, too.
March 9, 2006
With the official start of Porter’s new class comes new responsibilities. For example, twice this month he is supposed to bring in very specific items for show and tell that coincide with the lesson plan for the month. Today was Porter’s first show and tell assignment, and he was supposed to bring a leopard. Since he usually wants to take only a favorite toy such as a train, plane or rocket, I started explaining to him yesterday about bringing a leopard today. It was slow going at first as he was initially opposed to the idea, but a trip to the toy store (in this case actually the craft store, Michael’s) changed his mind and he got quite excited about finding a leopard. So we found a good specimen and headed home. This morning, he remembered that he had to bring the leopard to school and a few minutes before his bus was due to arrive, he had his leopard in hand.
Then disaster struck. With about five minutes until his bus usually came, the leopard was missing. I kept asking Porter where the leopard was, and he kept pointing to and then rifling through the box of toys we keep in between the fireplace and the stereo. We frantically looked everywhere. I confess that I grew very agitated and not only did I yell at Porter to find his leopard but I also told him that I was angry with him for losing it. He was visibly upset, I’m sorry to say, but I was determined that he should learn the consequences of losing the leopard. I was very frustrated because we had gone to some trouble to make sure we were prepared for him to participate in his new class. I know it was a little thing, but it just crawled under my skin and stayed there, gnawing at me. Luckily, Sarah found a small toy leopard in a tub of zoo animals we’d gotten for Porter years ago, but had put away because they were too small for Alice to play with. So at least he had something to take to school.
But I couldn’t let go, so even after he’d left for school I kept scouring the living room for the leopard. Finally, just as I had given up, I spied it underneath the wicker basket we recycle newspapers in that sits on the opposite end of the fireplace from the toy box. I scooped up Alice and we headed for Porter’s school. When we arrived, Porter was in the hallway, just inside the main entrance sitting on a chair with his friend T.J. I think he was waiting for his trip to the bathroom. He was very happy to see the leopard, although he thought my arrival signaled that he was going home, which I had to explain was not the case. Anyway, the incident had a happy ending of sorts, but it did disrupt my morning quite a bit and I’m a little troubled with myself for how upset I was over the whole affair.
I remember as a child, always losing things and, my parents being very frustrated by my own nonchalance about finding them. And several times my mother made good on her promises to throw away toys which I had left lying around. I’d come home from school and they’d just be gone. No matter how upset I got, they never came back, either. So over time, I became very protective of my possessions. Between them disappearing and my drunken stepfather ritually destroying them, I was constantly struggling to keep them safe. Is that why I’m unnaturally attached to my possessions today? It’s probably a factor, certainly, but as an adult I hate to blame it all on Mommy and Daddy. It just sounds too new age whiny and more than a little Freudian. But it is more than a little strange to see in myself the same anger that I produced in my Mother over what is essentially ephemera. I can’t say I agree with not disciplining children or teaching them that actions have consequences but I don’t want to make the same mistakes my parents did. I want to make all new ones. I recently read Lynne Truss’s follow-up to her hilarious Eats, Shoots & Leaves, which is titled Talk to the Hand: The Utter Bloody Rudeness of the World Today. In one of the chapters, she theorized that the reason that so many people today cannot admit their own mistakes (which she calls the “Universal Eff-Off Reflex“) is that as children, their parents adopted a particular way of shielding them from any blame whatsoever.
Here’s an excerpt from the book:
Modern parents from all classes seem genuinely to believe that they are doing the right thing by protecting their children from blame or accountability of any sort. Every time the little chaps get themselves on a hook, the parents gently lift them down and tell them to run along and forget about it. While working-class parents pride themselves on how quickly they can march to the school and pin a teacher against a blackboard, middle-class people spend a lot of time worrying: “Is it right to tell off other people’s children?” and wringing their hands amid the shards of their favourite Chinese jardinière.
People are brought up nowadays not to split under any circumstances — least of all when an apology is demanded. Quite the reverse. Under attack, the individual personality wastes no time bolstering its defences. It circles the wagons and starts firing. Not a second is allowed for self-examination. Where this comes out in a most peculiar way is in our dealings with people who, we feel, are obliged to apologise on behalf of the company they represent, but who don’t see how they are personally involved. One of my favourite stories concerns a man buying a book. He had entered a reputable bookshop and been treated in an off-hand manner when he asked for help. Then, having located the book, he paid for it with his credit card. The assistant put the bill in the bag, and he said, “I’d like to put the bill separately, please,” at which he was told: “Well, you know where it is; you can do that yourself.” He felt aggrieved, and said so “I’ve been in this shop for five minutes and spent £30, and no one has been polite to me.” At which the assistant retaliated: “Just because you spent £30 doesn’t mean you’ve bought my soul.”
What marks out the Universal Eff-Off Reflex is contained in the name: it’s a reflex. It’s as if you touch someone lightly on the shoulder and snick, snack, the next thing you know, your hand has been severed at the wrist. It is startling partly because it’s so primitive, so animal. Through shielding children from feelings of low self-worth, we have created people who simply will not stand to be corrected in any way. “Excuse me, I think you dropped this,” you say. “Eff off,” they say, with heat. “There ought to be an apostrophe on that sign.” “Eff off.”
Personally, I see this sort of thing all the time, especially when driving. Almost every single time some yahoo cuts you off, almost runs in to your car, etc. the second you flip them off they immediately return an indignant, angry bird of their own. And this reprisal is without a second’s hesitation to consider whether or not they might have been in the wrong, so I think Ms. Truss may be on to something here.
So it may seem like I’ve veered a bit off topic, which is fair to assume since I do tend to ramble. But the truth is that I feel very strongly that I don’t want to raise my kids to not know the difference between right and wrong, and the consequences of actions, particularly their own. It just seems common sense to me that we should always be able to recognize our own wrongdoings and appropriately apologize for them when we can. Or at a minimm not instinctively lash out at our accusers without first knowing our own culpability. So it was very hard to not console Porter over the lost leopard, but it also seemed like it was very necessary for him to learn a hard lesson. Was it the right thing to do? I honestly don’t know and, as usual, I’m putting far more thought into it than is probably necessary.
He didn’t seem particularly upset when I showed up at school and seemed genuinely happy to see me so I don’t think he’s been overly traumatized by this incident. On the other hand, I’m a basket case. I can hardly wait for the teen years.