Hitting us where we live: Austin

Brian Deer has chimed in--"chimed" seems such a missish word to use around Brian Deer--and in the course of detailing some of the reaction he witnessed (100 years ago, corsets would have been loosened and smelling salts brought out), Deer wandered over into my territory of Austin, TX.

Wakefield's family reportedly loves it here. I'm sure he loves his salary here, which is practically a necessity given how ridiculous the cost of living has gotten in this town since I took up fairly permanent residence in 1985.

Deer quotes some local pediatrician (or, if you're British, "paediatrician") as describing our town as "a very welcoming, somewhat renegade, community." Well,OK. This doc also describes Wakefield as having received a "lynching" in our local paper. And here I thought the paper was really doing the world a favor by telling the facts, rather than engaging in false "objectivity" by including the anti-vax side in Every Single Autism Article. They started doing that quite awhile back, before it became the vogue in the larger media outlets. Sometimes, I guess, familiarity does breed a bit of contempt.

The pediatrician quoted above also informed Mr. Deer that our town's motto is, "Keep Austin Weird." It used to be kinda weird, a funky, fun, laid-back place to hang out, see bands, drink beer, eat amazing Tex-Mex. These days, it seems more like one big sprawl of bad traffic, $6 milk gallons, overwhelming webs of freeways, and neverending ribbons of strip malls. Perhaps that's just my jaded perspective after watching Austin's explosive growth during the past quarter century.

It's been a bit weird for me lately, though, having El Doctor so nearby, seeing this entanglement of where I live with where I blog. ThoHo is so close to home that I drive by it often. Even stranger have been the days that I've been dining in a neighborhood eatery only to see Herr Doktor himself dining there as well, solo. I think he eats salad mostly. Tall guy. Bit dour and tired looking. I always keep an eye on him, wondering if he'll corner some unsuspecting child and ask for blood, but he hasn't done that so far. (I also keep my nose on high alert for the smell of sulfur). We're weird around here, still, and occasionally welcoming, but I don't think we'd welcome that.

Pretend his name isn't Wakefield

You learn about a doctor. In the course of finding out information about him, you come across a video. In it, he describes overseeing blood draws from young ones at a children's birthday party and giving them money for it--in which order this happened is unclear. He laughs about their tears and one child's vomiting and another's fainting and laughs about paying the children for their discomfort. Imagine your own child at that party. Would you find it amusing?

You then learn that 10 other people who worked with the doctor on his most high-profile study decided to withdraw their names from their mutual work after finding out that the doctor concealed a serious conflict of interest from them, a conflict that had to do with something that would earn that doctor a whole lotta money. And you come across information that the major work the doctor is known for was retracted by one of the most high-profile medical journals in the world. In fact, the entire scientific foundation for this doctor's fame lies in ruins, and it was his doing, his sins of omission and comission, that did it.

Finally, you learn that this doctor has been found by a panel of disinterested but extraordinarily meticulous investigators to have unnecessarily countenanced intrusive medical procedures on children, including inserting needles into their spinal cords to withdraw fluid, and did so outside the bounds of ethical approval from his institution. If you've ever had a spinal tap, imagine your child having that experience--unnecessarily. It's a big needle. I've had three. No child of mine will have one of these unless there is a clear medical indication for it.

Thus, the doctor clearly shows a pattern of disregard for the rules of ethical behavior in each of these established scenarios. Yet, he continues to assert that the entire string of events was somehow manipulated against him by external parties.

Would you, after having reviewed these data, all of which are established facts arising from his own actions, consider this doctor to be a caring man whose primary interest is helping people?

I wouldn't. I know doctors whose primary interest is exactly that. And they don't do these things. Of course, they're not famous. They're not lauded as gods by acolytes blinded to their faults through the simple mechanism of raw, open vulnerability. Nope. These doctors I know, whom I respect and admire deeply, simply, quietly go about their day-to-day work of literally saving lives, helping people, and, in true adherence to the oath they took when they became doctors, first and foremost doing no harm.

Now, ask yourself: Of these two kinds of medical professionals, which one would you want around your children? The narcissistic sadist who violates ethics and oaths, or the quiet, competent everyday hero?

Homeschool: An ideological minefield

As we stumbled into the homeschool thing thanks to exigence, rather than a carefully thought-out philosophy, I've since stumbled onto the ideology that accompanies homeschooling. Admitting this will probably cast me as a visually impaired fool, but I didn't even stop to think that we'd encounter quite so much hard-core ideological blather as we already have in the three short weeks we've been doing this.

And that's only by email. I'm scared--especially by the quantity of Birkenstocks I witnessed yesterday at a science lecture--to even explore what may be out there in real life. Antivaxers? Unwashed hair? Hairy armpits? With Bibles tucked into them? Coated in patchouli? The mind reels.

I posted a couple of days ago about how TH and I did a drive-by of homeschool soccer. Some kind commenters had some suggestions about how we could get involved more easily. The thing is, we know about pretty much every homeschool opportunity there is in our area, and the sheer volume of these opportunities overwhelms almost as much as that soccer game. A brief sampling: If we wanted to, every week, we could bowl, play chess, swim, do dance, yoga, karate, soccer, or track, play some more chess, participate in performing arts in several different places, attend a claymation class (yes, really), attend scientific lectures, get involved in a geography group, so some more yoga, take guitar/piano/drums/voice, meet for weekly playground groups at parks all over town, enter math team contests, and enter into about six different talent show competitions.

In other words, we've got a really active homeschool community here. And that's great, but we're not doing one single thing of the activities I listed above except the science meetings.

I find out about these opportunities thanks to a local "secular" homeschool listserv. About 20 emails a day come through from the list, each one with a new chance to learn, interact, and drive all over the greater metropolitan area. Occasionally, there's a couch or other item of furniture on offer. And one email offered an "Apologia" biology book for sale. Intrigued by that name--I mean, what else could that mean--I looked it up. Learn, live, and defend the faith, indeed.

That such an ideology exists in the homeschool community comes as no surprise to me. But what did surprise me--and still does--is another kind of ideology, a better-than-thou vibe that's come through some of the things I've read. There seems to be a river of righteousness, not of the religious kind, running through our far-flung group of homebound scholar families. It appears that homeschooling is, for some, an ideological stance against the monster that is public school. And that even when you're secular, you can still have a religion, intolerances and all.

Oh, you'd like an example, you say? Well, someone on this particular listserv posted some information about an orientation coming up at a local public school. I assumed, upon seeing it, that it would be useful information for homeschool families in that area who might be considering sending their children to public school. That was the sum total of my thought expended.

Others were a little more energetic. I just about died when another person posted to the listserv that posting information about public school was "like joining a vegetarian list and posting your favorite roast beef recipe. It may done with good intend (sic) and in an effort to share, but it is not appreciated." The email went on to state that things like this should be nipped in the bud before anyone else sees fit to post about "institutional schools" and then asks--yea, verily, orders--all posters to "take this and stuff like this off the list."

Whoa.

And then another little kerfuffle when someone had the temerity to post about online public school curriculum being "free" in our state. Another poster felt compelled to point out that as taxpayers pay for it, it's not really free. Really? Thanks for the civics lesson.

Why does everything have to be ideological? Why can't we be homeschooling in the secular community because it's just what's best for our kids? I had no idea that there was this minefield of righteousness about homeschooling out there. And what a self righteousness it is. I consider myself and my family to be so lucky to be able to do this for our son. Not everyone has a decent work-at-home job or a single sufficient income that would allow the flexibility we need here. Not everyone has the luxury of driving their kids all over town for creative arts, sports, claymation filmmaking, or martial arts, all of which cost money. Not everyone can afford to pay for the curriculum materials, which for us, at any rate, are not cheap. Where is the righteousness in having the good luck and good fortune to do what's best for your child? Where do these people get off acting like anyone who's doing otherwise has made a pact with the devil?

I'll go way out on a limb here and say that it's just like everything else in our society--nothing can exist without being politicized in some way or another. Nothing can just be what it is. It's no different out here in the adult world than it was on the public school playground from which I plucked our son midyear. It's all about sides, no middle ground allowed. I'm thinking we need to walk around with signs on that identify us right off the bat. "Holy roller." "Truly secular." "I think public school is fine, it's just not for us." "I homeschool, and I don't respect you if you don't."

Makes me really glad that we drove right on by that soccer game. I obviously need time to formulate my homeschool philosophy and choose a side before I venture out. And I guess I'll need to keep the fact that I've still got a child in public school on the down-low. Wouldn't want to be told to take that off-list.

The Wakefield decision blog compendium

I don't really need to do a blog roundup because others have done a much better job than I would.

From Left Brain/Right Brain, a listing of their own. Includes video, link to the complete decision, and more.

Liz Ditz is busy compiling one of her as-usual thorough lists of posts from both sides (what are the sides here? For good scientific practice vs bad scientific practice?). So far, the vast majority of links on the "Wakefield is innocent" side are from AoA. Natch.

I've already given you AoA's "FAQ" on the matter, which addresses no frequently asked question that has anything at all to do with the matter at hand.

And be sure to check out Shannon's thorough writeup on the issue over at her BlogHer special needs parenting blog.

GMC: Wakefield acted "dishonestly and was misleading"

UPDATED WITH NEWS (AND ONE BLOG) LINKS BELOW. I'll put together a list of blog postings next.

The official--and I mean official--word is in from the General Medical Council. Check it out in the Guardian.

A sampling of quotes:

"failed in his duties as a responsible consultant"
"did not act in the best interests of children involved in his research"

"acted dishonestly and was misleading and irresponsible in the way he described research

Why do I care so much? Oh, it's not just because this hack job of science ended up in so much wasted time, money, energy, emotion, and lives. It's also because in science, we've got ethics. We're supposed to, anyway. We have standards. We've got these rules, you see, about "research involving human subjects." They're designed to keep the more nefarious among us from taking advantage of vulnerable populations, to keep them from exploiting people who are least able to defend themselves because of false hope, scientific ignorance, desperation, or incapacity.

And when a researcher, scientist, doctor violates those rules, steps outside of those bounds, acts dishonestly, doesn't act in the best interests of the children involved, they're joining ranks with the big cheaters of science. With the big selfish bastards of science who are in it only for themselves, the research "subjects" be damned. The ones who will, without compunction, do things that harm just so they can do themselves good.

What happens now, after this verdict from the General Medical Council? At a later time, they will decide whether or not Wakefield and his compadres have committed serious professional misconduct and should be struck from the medical register.

Regardless of how that next step transpires, the verdict is clearly in: Dishonest. Misleading. Irresponsible. Are these the guiding lights of the anti-vaccine movement? No wonder they seem to be fumbling in the dark.

-------------------------------------------------

Update--A compendium of related links from today's news media outlets:

BBC News: "MMR 'scare' doctor acted unethically, panel finds." Has useful video of Wakefield describing the bloodletting at a child's birthday party and a graph showing what happens to measles rates in when MMR uptake falls.

The Guardian: "MMR doctor 'failed to act in interests of children." TH saw Wakefield's picture on this page and asked, "Is that man evil." Pinkie swear. That really happened.

London Times: "MMR doctor Andrew Wakefield 'abused his position of trust.'" As the headlines indicate, he is, indeed, the "MMR doctor." But not in the way that would usually imply.

Even USA Today: "Panel says doctor claiming link between vaccines and autism acted dishonestly." Even USA TODAY.

The Telegraph logs in with its editorial viewpoint: "MMR, a sorry episode." Sorry seems so...euphemistic.

From my hometown paper, our medical writer's blog--and a comment from, of all things, Bensmyson.

Here's an entertaining headline from EarthTimes: Parents of children with autism call decision in Wakefield trial a threat to medical integrity." I'm a parent of a child with autism, and I call Wakefield a threat to medical integrity.

And even more entertaining is AoA's weak effort to "spin" this by, well, not actually addressing anything about it at all in their "Short form FAQ about the Wakefield GMC case," which was, actually about research misconduct, not the Lancet paper. What little they do say about research practices completely omits the actual research practices that were in question here.

And, I'll close these for now with the Guardian again: "From the Lancet to the GMC: How Dr. Wakefield fell from grace." Somehow, that reminds me of Paradise Lost...can't quite put my finger on the association...hmmm...

Apple, tree run away from crowd

TH and I made our first foray yesterday into integrating into the homeschool world outside of our home. It's a large world. In fact, there are so many extracurricular offerings in this world, at least where we live, that it's overwhelming. If I wanted to, I could schedule TH into two or three activities every single day.

I don't want to. I want maybe one, two activities every couple of weeks. That seems good to me.

One of the activities on offer in our community is a homeschool soccer meet that happens twice a week in the mornings. We've been discussing a drive-by, just to check it out, and yesterday, we did that. I even had TH wear closed-toe shoes (his cleats are long outgrown), just in case we got inspired to get out, join in.

Ha. Ha. Ha.

After some driving around in our large local center-city park, we finally found the group. As advertised, it was the only mixed-age group out there in mid-morning on a weekday, playing soccer. I'd fully intended to at least park, get out, stand there, gauge things.

But as we approached, we noted the large number of people. About 30 or more standing around or sitting in chairs. Small groups of adults, knotted together, talking. And a soccer game in progress with what looked like about 40 people running up and down the field.

Daunting. TH immediately volunteered that if we got out, he was going to hide behind a tree and watch everything from that safe vantage point. I felt his pain. I tried to imagine parking, getting out, walking over to that horde of strangers in the midst of communal soccer, inserting myself in there, using my deficient social skills to try to get to know someone, anyone. Yikes. The very horror.

Without really elaborating my own feelings to the increasingly terrified TH, I just kept on driving. Yes, we did a drive-by on a social activity yesterday, not only because my son has Asperger's and was deeply freaked out at the sight of all those people but also because his mother, the tree from which he ensued, felt pretty much the same way.

I guess integrating socializing into our homeschool curriculum is going to be a lesson for us both. The apple has obviously not fallen far from the apple tree here. In fact, the apple has expressed a desire to hide behind the tree. But where can the tree hide? I'm going to have to overcome some of my own dubiousness about socializing if I expect to model it successfully for my little homeschooled apple. And it may be that a huge, communal soccer meet full of strangers to us who are familiar to each other might not be the best place to embark on this growth experience.

Reason #2761 why bullying is not just "child's play"

We all know bullying is wrong, right? Well, some of us do, anyway. But what some of us perceive as bullying, others think of as "kids just being kids" or "child's play" or "a taste of the real world." My take on it has always been that people who get away with bullying as kids grow up to be those assholes you know as adults.

And it comes as no surprise to me, at any rate, that bullying carries far more in terms of long-term consequences to the bullied than just in-the-moment emotional trauma. Those stress hormones do damage that, according to a new study out of Australia, can last a lifetime.

My favorite quote and one I want to nominate for some "Gee, Obvious Much?" award someday is this one:

Bullied kids are more prone to feelings of loneliness, depression and low self-esteem, as well as physical ills like headaches, abdominal pain, nausea, and recurrent upper respiratory infections and sore throats, Pollack says.

The loneliness is a given. So are the depression and the anxiety, the kind of depression that can lead to suicidal ideation at age 6 or 7, just wishing you were dead.

And I remember that anxiety. Lying awake every single night, worried that the next day, the people who were mentally and physically abusing me at my school would try to kill me, as threatened. I couldn't walk by anyone who made a sudden move without flinching, and to this day, I still can't. School, especially middle school, was one day of mental hell after another, constant mockery, persecution, physical assaults. I didn't know it at the time because I wasn't trained in endocrinology yet, but the effects of the stress hormones strafing my small body from the age of 6 or so must have been chronic and permanently damaging to more than my psyche. I built up tough shells of sarcasm and dry humor to protect the psyche, but there wasn't a whole lot I could do for, say, my vascular endothelium. Time does not, in fact, heal some wounds.

And it's for these reasons and more that I take bullying so seriously. That we all should. This isn't just "kids will be kids." It's not "man up, little dude, boys will be boys." Those kids who engage without negative consequences in this willful sadism are the ones who grow up later to become insouciant jerks, unaware in some ways of the tremendous damage they've done. What's their permanent affliction? I guess being jerks. But the permanent afflictions of those whom they tortured may be far less obvious...but far more damaging.

The children are coming home from Haiti

(Updated below). They are on board a military transport plane as I type this. They should be in the U.S. any minute. This has been after untold hardship for the children, especially Louvencia, and after epic string pulling, phone calling, emailing, flying, and other efforts on the part of their parents. Thousands have been praying. Michael arrived in Haiti only to develop some kind of dysentery, which he bore while helicoptering to one part of the country to retrieve his two-year-old son, sleeping on a tarmac with nothing in the way of bedding, food, or water, delivering medical supplies and care, and struggling with the woefully understaffed and inefficient and apparently imbecilic U.S. Embassy to get release to get both children out of the country.

From what I understand, a couple of U.S. reps/senators from their state have been extraordinarily helpful. The state department and executive branch? Not so much.

Along with these two children, about a dozen others are coming out at the same time. Efforts to get out the remaining 30 children from that particular orphanage are ongoing.

Meanwhile, Michael, who has been in Port au Prince since midweek last week, describes it as being like Armageddon. He and his wife have been true Parent Warriors here. Finally, a reason to use that phrase when it really applies.

Keep them and their children and the remaining children in your thoughts and prayers.

Update: Final update for everyone, a story from their hometown paper in Durango. Thanks to all for prayers, thoughts, caring, donations, good vibes. What an immense relief in the midst of this horrific disaster.

Homeschool and health

For quite awhile now, we've had a stressor in our midst that we didn't even recognize. Its source was the interaction between TH and school. Without even knowing, it guided our mood, governed our days, set our rhythm to cranky. How do we know that this interaction was to blame?

Because when we started homeschooling, everything around here got better. Relaxation like we've not known since TH started kindergarten. The Viking, whose moods seemed to ebb and flow these past few years, has been in a state of relative euphoria, and I really think it's because we've removed a daily, nagging, permeating anxiety. I'm not that good at analyzing my own emotions, but I'm feeling pretty great myself. And TH? Learning. Learning quite well. A happy camper who informed me excitedly this weekend that homeschool would start again in two days. That is startling for two reasons. First, he's excited about school. Second, he knew what day it was.

It's been a fun 2.9 weeks. We do math. He plays Wii sports. We do spelling, language arts, mechanics, vocabulary. We have lunch. If we so choose, we do these things somewhere besides our home. We walk our town's hike-and-bike trail or go to the botanical gardens for an outdoor break. When something comes up in the course of our studies or conversation that catches our fancy, we google it and learn more about it. Science is a blast. TH hums to his heart's content while finishing up math or writing a spelling word. He's encountered (in the word, not the flesh) John Steinbeck, Chaucer, a rabbi, the concept of considering perspective, how to write a play, how to brainstorm journaling. He's written dialogue and possibly even mastered the measurement of the passage of time. Possibly.

And all of it without worrying about what happened with the other kids that day. All of it without having him come home, half-legible homework assignments in his assignment book, half-intelligible explanation of what exactly we're supposed to do. No lengthy discussions after his bedtime of what the best next step for him should be. No two-hour marathons after 4 pm of trying to get him focused enough to complete homework assignments. No scratches on his face or abrasions of his psyche. No parents pointing an accusatory finger at him, using the word "bully."

My friend, Kristina Chew, blogs frequently about achieving a peaceful, easy feeling with her son, Charlie, and her husband Jim. Now that we've removed what we never recognized as a heavy weight of stress from our backs and minds, I feel like I know what she means. We haven't felt this peaceful and easy as a family since 2006, since the day our youngest child was born and TH began kindergarten.

What does it all mean? I don't know, but I've got a great to-do list for anyone who's wondering. Look around. Where's the stress? Find it, and then figure out what you can do to make it go away. Forget about society's boxes. Do what's right for you, for your family. Peaceful and easy feelings aren't just about relaxing, doing nothing. They're about knowing you've made the right decision, you've done the right thing. And it feels pretty damned good.

Durango news story about our friends and their Haiti adoption efforts

You can read it here and watch the video that accompanies it.

And here is their latest update (sorry about the formatting, but I don't have the energy to fix it):

Hi there. Again I apologize for the mass email, but I just don’t have it in me to type all this again. The last 24 hours, apart from the day of the quake, has been disastrous. You will not likely see this on the news.

On Saturday, the Haitian govt released orphans who had started the adoption process. On Monday night Janet Napalitano has granted legal humanitarian parole to our children (all of whom were approved by the U.S. for us to adopt prior to the quake), but then the state dept/FEMA/dhs/USAID over the last 4 days has refused to:

1. Assist with the safe evacuation of our children

2. Provide organized relief to the orphanages worst hit (I think there are 5-8 in PAP that are like New Life Link: destroyed)

The state dept then REQUIERED that all orphans leave via the US embassy in PAP – which is not a functional embassy: NO water/food, mobs of people trying to get in and only 2 case workers. They have refused to allow evacuate to safe shelter for processing in Haiti and safe shelter for processing in NYC (with food, medical services, beds etc) – both of which were available LAST FRIDAY without taxpayer money. Orphanages have been looted in the last 3 days and many have run out of food/water. Due to lack of fuel for cars: orphanages had to trek children ON FOOT as far as 2 kilometers to the embassy – most children UNDER 3 years old, and without any security escort – walking. Now that adoptive children are showing up at the embassy today – there is HUGE bottleneck—and today the state dept will not allow any more adoptive children at the embassy – they have to stay in orphanages w/o food/water. This sounds like hyperbole but it is not.

Our government which has donated millions of dollars to Haiti relief, and has thousands of military personnel on the ground, has an aircraft carrier within 10 miles, is requiring a few hundred small children of its citizens to walk to a non-functional embassy to get out, without military assistance, food or water.

Our country which provided half a billion in donation over the weekend can’t get food and water to babies even when we know the exact location they are. We have information from our senators/congressman that this has been pleaded and pushed to the extent that they can; this is confirmed by JCICS. The decision to withhold assistance to these children is from the executive branch of the govt: State Dept, USAID, DOFA. We are powerless to get to them. I believe that this is NOT an exaggeration.

So where are we? On our own, and relying on private citizens and the kindness of Haitians who have YET to leave the orphanages where they worked and search for their own families.

So where are we? Apart from being completely exhausted with constant phone calls with congressmen/senator/governor and overwhelmed with worry and grief.

1. Michael is gone. He will arrive in Haiti tomorrow. He has medical supplies which will be needed and actually are what allows him to get in. Through a series of miracles in the last 3 hours, will be flying on plane from an anonymous donor with a small mission group out of Nashville (of all places). We hope he can come home with Louvencia (at best on same day). This is entirely possible but not probable. Of note, without the donation from Mercy Medical Center there is NO way this would have been possible.

2. Of note: Ken Salazar’s office and Senator Udall’s office were more than helpful. Senator Bennet’s office barely responded to our hand-delivered letters/calls until today, but hey, they finally called back. Governor Ritter’s office was, how should I say, less than helpful.

6. Thanks you for your prayers. Please please please continue.

7. Finally, thanks to God, who knows when even a sparrow falls.

Haiti orphan update: Not good

From our friends:

By now most of you have heard about Secretary Napolitano’s order permitting Humanitarian Parole for Haitian orphans. This removed the legal barriers to bring our little ones home.

In the meantime, a massive campaign coordinated by the Joint Council on International Adoption has been undertaken requesting support for orderly evacuation of the orphans.

This is the email we received tonight from the Joint Council:

“It is once again my job to be the barrier of bad news. Another day come and gone and no change. Despite extensive Congressional support and all of your calls to your Members of Congress we have hit roadblock after roadblock. At this point we respectfully ask that you stop contacting your Members of Congress requesting their assistance with obtaining security, transportation, and water for the location. The Department of State has not and apparently will not provide the small assistance that we have requested.

Given the current circumstances, at this point we are recommending that someone from each orphanage escort the children who qualify for humanitarian parole or adoption visas to the U.S. Embassy in Port-A-Prince. We recommend that the orphanage staff arrive with the children and any adoption paperwork that has not been destroyed as early as possible in the morning in order to attempt to obtain visas or parole for the children. Please understand that this option may not be considered safe and that the U.S. Embassy did not allow some orphanages onto the premises today. Additionally, please note that it has been reported that there is no food, water or facilities for the children to use while at the Embassy. As noted during our conference call earlier today, these are our recommendations only and should not be used to replace your or your orphanage director's good judgment.

It is our understanding that any children processed by USCIS in Port-A-Prince are leaving on U.S. cargo jets to locations that are not often know until a hour or so before the flight leaves. At times children have left Haiti without the knowledge of their adoptive parents.

This is currently the worst case scenario for the children's well-being and safety but at the moment there are no other options.”

This means is that that U.S. officials are refusing to expend even a small portion of the massive, hundred million dollar relief effort to assist in the rescue of these orphans.

Why the military cannot round up these children and evacuate them by military transport is very difficult to understand as this probably could be accomplished in half a day with several trucks. But aside from transporting orphans to the U.S., Children of the Promise (which is located 80 miles outside of Port Au Prince and has a 3 acre walled in compound with water, electricity, food, medicine etc) has offered to serve as a safe, central location to gather and process orphans. This offer too was rebuffed by those in charge of relief efforts. And so many of these little ones remain in extremely precarious circumstances.

With the collapse of basic infrastructure and sanitation, today we finally started to receive reports of disease outbreak. We also learned that Louvencia’s orphanage (which has 49 children ages 6 and younger) today ran out of food and water, although we have reason to hope new supplies may be arriving tomorrow.

So the latest breaking news from Haiti is that officials have decided the orphanages must fend for themselves, even though they are running out of food, water, gasoline, and other essential resources. Of course several orphanages are completely destroyed and their children are housed in makeshift locations.

Haiti orphans and adoptive families need help NOW

Friends of ours, both doctors, have been trying now for months and months to adopt two children from Haiti. Like many children awaiting adoption, these two children are now in desperate danger. They need your help now. Please take a minute and contact your elected representatives and senators and urge them to save these children...not only these two but all of the children with loving parents waiting for them stateside. See below.

Above is a picture of one of the children my friends are adopting. Her name is Louvencia. She turned one yesterday. In the picture, she is sleeping on the streets of Port au Prince.

Please. Do something now.

Many many thanks.

Template:

Please call your congressmen NOW!

Orphanages are out of water and food; New Life Link ran out of food last night. There are numerous cases of looting orphanages in PAP.

WE have made some progress: Haiti has agreed to release our children, Janet Napalitano will grant humanitarian parole and there are planes/ and a secure location with food/medical equipment/hospital stateside that we can use. BUT the U.S. government has NOT granted evacuation and security. Everything else is IN PLACE for these kids.

We need the federal govt (USAID) Office of Foreign Disaster Assistance (OFDA) to approve our childrens evacuation NOW.

A sample of the point we need to make are:

Hello, my name is…

My …

I know that many Members of Congress continue to support efforts on behalf of Haiti’s orphaned children. I extend my thanks to the Congressman/Senator.

I am calling because…

• We need your help to get our adoptive child out of Haiti safely.
• Water, food and medicine are running out.
• Gangs have looted some of the orphanages and even travel is not safe for the children.
• The Department of Homeland security has granted humanitarian parole, but it is only the first step.
• The devastation from the earthquake is vast and our child’s safety - and even life - is at risk.

Joint Council on International Children’s Services, the Congressional Coalition on Adoption Institute, and a team of congressional offices and relief organizations are working to coordinate a staging and housing center to provide:

• Physical safety
• Medicine
• Food
• Water
• A Staging Center for USCIS (U.S. Citizenship and Immigration Services) to process humanitarian parole

The groups working to launch the staging and housing center already have most of what the children need.

But they do not have

• Water
• Security to protect the children and supplies from gangs
• Transportation to bring the children into this safe haven

We are asking that (name of Member of Congress) personally call:

• Secretary of State Clinton, and
• Dr. Shah, Administrator Designate at USAID

And specifically request that they authorize security forces be sent to the offered staging center and assist in the extraction and transport of these children from their orphanages to the staging center. All other pieces of a successful operation of this staging center are currently in place, but all hinge on this authorization of security and transport.

If this security does not reach the site within 24 hours, children being adopted and many other children will continue to suffer and may in fact not live long enough to be united with my family and the other 300 U.S. families.

Note:

If the Member of Congress needs more information, please have them contact:

The Congressional Coalition on Adoption Institute

Info@ccainstitute.org

202-544-8500

The Joint Council on International Children’s Services

jcics@jcics.org

703-535-8045

Fight on, good people, fight on

MLK had a dream, a few years before I was born. I turn 42 this year. There's been progress, substantial progress, on that dream in the interim. But if you take a look around and catalogue the hate that permeates everything from vaccine wars to Pat Robertson and his vitriolic buddy Rush Limbaugh to well, that little problem in the Middle East and back home again to the way people are so ready to judge, vilify, vituperate, and critique each other...well, we're still a long way from realizing that dream.

In spite of all that, we can continue to dream. There are days, certainly, when I grow sick of everything. I'm sick of war, of hate, of the politicization of real problems to the point of absurdity, beyond any hope of pragmatism. I'm sick of the false indignation and false anger and worked-up drama that pundits pour out on our weary heads. I'm sick of hyperbole. I'm worn to a nub by drama queens. I despair that our nation will ever re-learn critical thinking, courage, and conviction.

In spite of all that, we can continue to dream. As Dr. King said, "Even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream." As dumb as it may sound, as stupid as it is in the face of people who think that the "public owes" children "nothing," as collectively moronic as we sometimes seem, I still believe in the American dream. I remind myself of how things looked when Dr. King made that speech, of how freely racists spoke out, how governments countenanced their attitudes, how institutions supported their hate. The previous decade with McCarthy. How devastating the losses of Dr. King and JFK and Bobby Kennedy and all those young men and women in the Vietnam "conflict" must have been. Kent State. The world must have seemed like it was driving at warp speed straight down to hell. Compared to that--even with the way this nation and our world look sometimes--things have inched closer to realizing that dream.

So, in spite of it all, we continue to dream. And in spite of the demoralization that can spread like a virus, the hate that can eat away at our best efforts, the misinformation that can sear through layers of common sense to expose the limbic stupidity beneath, we must continue, in whatever way our best lights guide us, to fight the good fight. Inch by inch. Keystroke by keystroke. Byte by byte. Dr. King said, "We will not be satisfied until 'justice rolls down like waters, and righteousness like a mighty stream.'" As I constantly remind myself when the weight of hate and willful ignorance and false anger seems impossible to bear, "Let us not be weary in well doing, for in due course, we shall reap, if we faint not."

On this day and any day: Keep fighting the good fight and try not to faint. It's the utmost any of us can do as we work toward realizing the dream.

The public owes him nothing

When you're an autism parent or an autistic person, sometimes, it seems like the world has risen up just to beat you down. Sounds pretty whiny, doesn't it? But there are just days like that. On a personal level, I've felt that way when I've tried to trust our community by being honest and open with them about our son's autism, only to find that beyond a handful of compassionate, understanding people, there's a world of folk out there with nothing better to do than gossip about and bash an eight-year-old child. Or, possibly even worse in some ways, who think that a special-needs child and his parents simply need to buck up, accept that this kind of bullsh!t is the "real world," just get over it already and get out of their faces with this stuff.

That's just our personal experience. It was demoralizing for us, after we had such temporary success with our Circle of Friends efforts, to learn that really, honestly, our community doesn't give a sh!t, at least not in any community-level, "it-takes-a-village" way. We had stupidly hoped that by entering our son in kindergarten with this cohort, by being honest and up-front about his differences, that the children and their families would get to know him, accept him as one of their own, at least tolerate his presence as a familiar oddity. And now we know...that was a stupid, idealistic hope not grounded in any reality about humanity.

And when you wander out into the rest of the real world and encounter what people have to say about autistic kids or about special needs kids, it just gets more demoralizing. All you need to do is read the comments that people make on news stories about autistic kids. I've addressed it before. The hate out there is almost astonishing. The lack of compassion recalls Stone Age vignettes of early humans clubbing each other to death in blind anger.

Where have we come from, and how far have we really gone?

Well, we do have laws. Federal law dictates that children like ours have a right to a free and appropriate education in the least restrictive environment possible. But I think federal law is as foolishly hopeful as we were when we placed our lives, our children's destinies, our hopes, and dreams in the hands of our community, our village, and watched them taken in two fists and dashed to pieces in the dirt. And every time I read a comment like this one, in which a commenter states that when it comes to children like Zakh Price, "the public owes him NOTHING!" when I see that seething anger and bitterness so redolent of a "how dare you have such an imperfect child who imposes on the rest of us!", I feel that sense of demoralization over and over again and get the urge to go live in a cave somewhere, protecting what's mine from the rest of them out there.

Given that we seem to be stuck in the Stone Age, it only seems reasonable.

The Zakh Price arrest report

Here is a PDF of the arrest report in the Zakh Price case. The real charge from the arresting officer appears to be battery, second degree (class D felony). Zakh would be tried in juvenile court under the umbrella of "delinquency," but were he an adult, the charge would be a felony.

Imagine the fear and how it must have escalated. What if this happened to your child?

By the way, we took a vacation

One of our best we've had as a family, and we've had many lovely vacations together.

The day after Christmas, we left for Santa Fe. People asked us, "What will you do there? Will you ski?" We don't ski, for various reasons. I just responded, "We're not going to do anything." And it was kinda nice to be able to say that.

We arrived in Santa Fe the next day--took our sweet time driving there after one of the largest snowstorms to hit North Texas in...forever. Roads were treacherous, drivers stupid, so we rolled with care.

On arrival at our vacation home--four blocks from the plaza and cheaper than any hotel we would've selected--we unpacked. Then, we proceeded to do almost absolutely nothing for the next five days.

We woke when we pleased or when the kids just couldn't take it any more. We wandered around in our pajamas, casually making a breakfast of eggs, pancakes, bacon. At some point, we threw together our snow pants and boots and headed out to the Santa Fe National Forest, found a decent hill, and did some sledding for an hour or two. Injuries were sustained, but minor. Face plants occurred, followed by a few tears and recoveries. We left behind forts, snow angels, and five sets of snowy footprints.

It snowed. We ate green chile. A couple of nights, the Viking and I ordered out, Japanese one night, some righteous New Mexican the next. New Year's Eve, the boys sat up with us to watch the ball drop in Times Square, we all had at least one black-eyed-pea each (it's a Southern thing), and the Viking and I enjoyed our annual ceremonial viewing of To Catch a Thief. In general, everyone (Dubya a probable exception) was relaxed and relatively peaceful (for three young boys excited about a new place and snow).

Our ride home was uneventful, our house still standing when we got there, Christmas tree still decorated--an unusual event for us because I usually undecorate within 24 hours of Christmas morning and put the house to rights. Yes, I'm that compulsive.

But not this year. During our time in Santa Fe, I didn't post, I didn't email, I didn't blog, I didn't work, I didn't lift a finger to type. I don't know how long it's been since I took such a hiatus from Web 2.0 or work or a keyboard, but it was great. From Christmas Eve night until January 1, I had left the virtual building.

We did finally take down the tree, actually the day we arrived home. I just couldn't take it. And of course, I was quickly back into the virtual groove, writing and editing and blogging and tweeting and doing all manner of electron transference. And that also was great. I was glad to be back.

In our town, we have a massive Christmas tree recycling effort, and dutifully, we loaded ours on top of our trusty steed of a minivan and hauled it down to the park for recycling. As we approached, a horde of recycling volunteers clustered around our car. It was like we were the Beatles and they were adolescent girls circa 1965. I guess there wasn't much business yet that day. As they gathered around--their real goal was to help us remove the tree from the top of the car--I heard a thunk from the back. Turning around, I noted that one of my children was missing.

It was TH. Disturbed and anxious about the large group of complete strangers gathered around the car, he had unbuckled and taken a header over the back seat into the cargo area of the van to hide. Only after everyone had moved away from the van did he struggle--for about 10 minutes--to pull himself back into position and buckle up.

We were back in business.

The very people who are supposed to help

Some do their jobs and do them well. Some go to more trouble to avoid doing their jobs than doing their jobs would require. And some, instead, do things like this:

Mocking an autism mother

Busted.

And the Zakh case gets even uglier

Over on the Facebook site that Carole Reynolds set up for Zakh, there is a series of wall posts. In these, Carole has copied and pasted from posts that someone has been leaving in making the rounds on the Internet. They essentially accuse her of having money, based on her past trips and expenditures, and of scamming people to pay for the lawyer they have.

It's a common tactic on the part of people who know they're wrong to engage in ad hominem attacks. But this is something worse. The details in this information suggest that some person or persons has engaged a private detective or some other individual with specialized access to information about financials, including credit card expenditures, and other personal history. The list of information this person or persons is posting is extensive and detailed, although in some cases, the inferences drawn are clearly incorrect.

The posts are clearly an attempt at a smear campaign against Carole. You can read what the person or persons are posting and Carole's impassioned response to each item. The posters responsible have gone to tremendous lengths to dig up as much as they could to try to vilify Carole. Why are they running so scared? Why are they attacking this woman? Because they have no real rationale for defending what happened to her grandson. If they did, they'd present it. Instead, they resort to ad hominem attacks, a classic tactic on the part of people who find themselves in an indefensible position.

It's creepy and getting creepier. Arkansas...is this how you want the world to see you? A state that is willing to countenance a smear campaign against a grandmother and her disabled grandson simply to cover everybody's asses? Fort Smith...is that the profile you want to have?

UPDATE: Mysteriouser and mysteriouser. The two people (Elyse Bruce and Thomas Taylor) whose names are attached to these personal attacks are associated with this Website and this blog. Which seems to have nothing to do with...Arkansas? Bizarre. This is starting to meet the criteria for Byzantine.

Zakhquery ( Zakh ) Price and the system

I've just submitted an opinion piece to my local newspaper for consideration, addressing the Zakhquery Price case in which Zakh, age 11, has been charged with felonious assault. In the course of writing this piece, I found myself wading into a bit of a quagmire of questions and mysteries, some of which I elucidate below.

To summarize the case: Zakh has been diagnosed with autism by at least three qualified professionals. He also has a diagnosis of ADHD, OCD, and ODD (oppositional defiant disorder). His IQ has been professionally measured at 68, and he has spent time institutionalized because of his behavior issues. His grandmother, Carole Reynolds, is his passionate spokesperson and advocate because his mother, who has several other children, some with autism, is "low IQ" and was "in special ed all of her life." Zakh also has a stepfather but spends a lot of time at his grandmother's home.

Zakh entered his Fort Smith, Ark., school after emerging from 2.5 years in specialized institutions. The school acknowledged his low IQ and some other issues but declined to elaborate in a timely fashion a true IEP or behavioral intervention plan for Zakh and placed him in a classroom of 28 children with zero supports. None.***

Zakh had three major meltdowns at school, and with each one, the school called in the police. With the third, Zakh kicked one staff member and pushed another. More on the arrest report below. The upshot was that the school staff pressed charges, and this 11-year-old child with an IQ of 68 and several diagnosed developmental disorders was charged with felonious assault battery, second degree, a felony. His family could not afford legal representation. End of summary.

You'd think that would be enough, right? Well, it didn't stop there. Apparently, Fort Smith is rife with a good-old-boy, cover-your-ass network that can stonewall and villify and slander and libel with the best of them, even if the target is a helpless, defenseless (well, except for that kicking) 11-year-old child with intellectual and developmental disabilities. This is where things start to look ugly.

A reporter, let's call him Anchor B, disseminated an email. Whether by accident or design, the email ended up in Carole Reynold's email inbox. She received it just after getting off the phone with this same reporter, who called her after receiving some confirmation of Zakh's autism diagnosis from another party to whom Carole had sent the information. The email is given below:

Greetings.. I'm wondering how much you have looked into this. I have very
reliable sources that tell me this child has never been diagnosed with Autism.
The Grandmother who is taking care of the child wants a diagnosis, but can find
noone who will do that. In fact, the child HAS BEEN diagnosed as oppositional
defiant .. and that he has been in the juvenile court system for the past three
years because of his behavior. He's only been at this particular school for
three months. I understand there is going to be a court hearing on this
situation next week sometime ( still trying to track that down ) in which I'm
sure more > details will come out.>> That's it .. that's all I know .. hope you
can help me with more info..!!

A disturbing issue arises from this email. Zakh is a juvenile, a minor. This anchor/reporter alleges that "very reliable sources" gave him federally protected, privileged medical and education information about this boy. Given this disturbing inference, I contacted the reporter myself, as follows:

I am in the process of formulating an opinion piece for our local newspaper,.... After reviewing some information on the Facebook page that has been set up on behalf of Zakh Price, I encountered a reproduced email that you sent to one of his family members in which you assert having acquired information that should be privileged under federal law, including FERPA. In that discussion, someone using your name and Facebook profile confirmed you as the source of the email and posted a few responses.

In the process of writing this piece, I am interested in identifying the

source of your information. You have clearly stated that you have access to this information, and whoever gave you that access clearly violated federal law. I will be addressing this tactic on the part of school district staff or representatives in my piece, and before I do so, I am interested in whatever input you have on the situation. I have the following questions. In addition to sending this email, I also will be contacting you by phone.

1. While you likely will not identify your sources by name, in the interests of journalistic integrity, you should be prepared to identify them by association and position. Can you tell me this information about the sources who provided the information you claimed to have in your email to the family member?

2. What is your intent regarding reporting this information in your role as a journalist? You did not seem to understand that the person contacting you was the child's grandmother and wondered how much she had looked into it. Based on your comments in the email, you are working this story. In the process of doing so, you have encountered someone who is clearly willing to violate federal law to protect the district. Have you made yourself familiar with the laws pertaining to this case? Have you investigated the legality of arresting an 11-year-old child with a borderline IQ and an identified disability and charging him with a felony?

In your responses to the family member who contacted you, you have embedded yourself in this story at the local level. I will be mentioning this particular interaction in my piece and would appreciate any response or input you may have.

Thank you for your time.

-------------------------------------

I received a response fairly quickly:

My station began receiving numerous phone calls and dozens of e-mails concerning Zahk Price about two weeks ago. Based on those e-mails and phone calls, I sent out an e-mail in an attempt to gather more information about the situation. I admit it was a poorly worded e-mail. The "information" I had obtained prior to my email was through Google searches based on information in the NUMEROUS emails and phone calls we were getting.  Never once did I talk to a teacher or school system employee, nor did I speak with the family about this case until AFTER I sent out the e-mail. I have taken responsibility for my poorly worded email and, again, have addressed this with the family and expressed my apology. Your assumption the Grandmother called me before I sent the first email is not true.  I didn't speak with her until after I sent it.

The tone of your e-mail also suggests an assumption that laws were violated. I'm sure you are aware that FERPA prevents a school from disclosing information about a child, but does not prohibit a guardian from releasing that same information. To make the claim that information being made public is a violation of FERPA assumes that the information was improperly released by the school and not a guardian who has the authority to release the information. To my knowledge, no laws were violated. No one from the school district provided me with ANY information. My 25 years in this business tells me that will never happen as the school district fully understands its confidentiality responsibilities.

We have not aired any story about this because there is so much involved and information about it is understandably limited in the interests of protecting Zahk. As you know the juvenile courts and prosecutors cannot comment on the case, just like the school cannot comment on the case.  I have made a number of contacts which I will be more than happy to share with you.

In talking with people about this, it's become a matter of how to approach it and do it in a way to make it understandable to each and every one of our viewers.  I can think of a number of stories to do pertaining to children with special needs and the school and court system's role in helping them since beginning this research.  The best interests of the child and the integrity of the systems in place to assist him should be the focus of the story.  That's my goal.

--------------------------

To which I responded as follows:

Thank you for your response. I did not imply or state that you had
previously contacted the family; indeed, had that been the case, the
inference that you got your information regarding his education and
health status from some source other than his legal guardian would not
be tenable. It is unclear how you could have obtained the information
you purported to have without (a) speaking to the legal guardian in the
matter or (b) speaking with someone who provided this information
without having been authorized to do so. If you would like to clarify
the source of your information regarding the ODD diagnosis or his
health/medical history and demonstrate that it was a legitimate source
speaking with a signed release to back it up, that would be useful.

-----------------------------------

His response was as follows:

The phone calls and e-mails we were getting referred to ODD. I simply did a Google search on "Misdiagnosis of Autism" in which "Oppositional Defiant Disoder" came up. I did another Google on that and got quite a bit of information.

The documents I received after all this was from a guy named xxxxxxx who is part of a website in Chicago. I'd be glad to give you his e-mail address and phone number if you'd like. He told me he got the documents from Carol Price. Carol told me in a phone conversation she was going to send other information concerning the arrest report and other police matters but I have not received anything from her. The only documents pertaining to Zakh's case that I have received came from xxxxx.

-------------------------------

I have discerned that "Carol Price" in the above is his conflation of Zakh's surname with his grandmother's first name to designate Carole Reynolds.

As a careful reading of the above indicates, the timeline involved here is murky at best. Who were these "very reliable sources"? Who made these phone calls and sent these emails regarding ODD before he ever even contacted Carole? I note here for the benefit of the reader that according to Carole Reynolds and other sources, the reporter's wife is a special-education teacher in the district. The reporter himself, as he notes, has been working in that capacity in Fort Smith for 25 years. He states emphatically in another forum that he did not get any information from his wife.

So, after this exchange, I called Carole myself. I learned a lot. For one thing, she's got it all documented, every last comment, diagnosis, meeting minute, every syllable. One thing I was most interested in from Carole was a description of exactly what happened that day in school, the "felonious assault" that led to Zakh's arrest. She read to me from three separate officer descriptions of the incident. Following are some highlights:

"I was sent to Xxxx Elementary for a problem juvenile....located the principal and teacher on arrival pinning down the boy identified as Zakhquery Price." The report goes on to describe that the teacher reported that Zakh got mad and started throwing books and chairs and pushed her and kicked the principal. It then stated that both staff members "experienced pain." It closes with "I arrested Zakhquery Price for battery second degree and transported him to the juvenile facility."

He's 11. He's developmentally disabled. He has an IQ of 68. He was in a classroom of 28 people what was now eight children--before they emptied it during his meltdown, anyway.

The other report is similar but provides a bit more detail. Apparently, the trigger for the meltdown was that in Zakh's mind, the teacher erased the extra credit spelling words too quickly. Events quickly escalated from there. According to Reynolds, the school declined to provide a quiet place such as a small tent for Zakh to go during these periods. Also according to Reynolds, she had made clear to the school that spelling was a meltdown trigger for Zakh, whose OCD leads him to perfectionism and subsequent behaviors as a result.

After speaking with Carole for quite awhile, I had a chance to speak with Zakh. He's got strep throat right now, and his voice was scratchy and tiny and sounded younger even than 11 years. I asked him, "Zakh, how did you feel when you were in school?" His response, "Not very good." "Why is that?" I asked him. After a pause, he replied, "I don't know." He may not know, but I'm pretty sure the rest of us do.

-----------------------------

It seems to me that there is a David vs Goliath battle brewing here. Zakh's got a lawyer now, but they still could use help with legal bills. I've compiled below a list of links if you'd like to find out more about Zakh or help out or just keep up with the latest developments. Thanks for reading. What's happening here is, as we all know, not an isolated case. And all you need to do to get yourself good and angry is read the comment thread on any news story about a child with developmental issues getting in trouble at school. Little by little, we must make this change.

Carole has created a Facebook group for Zakh that includes a listing of blog posts related to his case.

You can keep up with news on the appeal here and donate to help defray legal expenses.

You can read more at several blogs, including Squid's, Kim's, and Liz Ditz's. Sorry if I've left out anyone whose blog I love, but my brain is practically fried from working this one all day today. One place you won't find anything relevant to this autistic child's being abused by the system is at Age of Autism. Kim takes that one apart with her usual aplomb.

***Carole has noted an elaboration of this information: "When he started school in Aug 09 is when he was placed into the regular classroom with 28 kids and 1 teacher.

After that school suspended him 5 times (and sent him home more than that) we asked he be placed in a smaller class at another school down the street. This was an ED class, which Zakh is not, and it is here he had the meltdown that caused the felony to be filed. There were only 8 kids in the room and they were evacuated by the MALE teacher. If Zakh was so dangerous, why did the male teacher take out the kids instead of the older and much smaller woman teacher?"

In which homeschooling tries to go viral

Homeschooling continues to go swimmingly. TH has informed me that I'm "the best teacher" he's ever had (which I doubt is true, but he's biased) and has requested that I also teach him when he's in college (I don't know how to explain to him that I'm not an accredited university). He's a happy little fellow, humming and singing and echolaling away while he does his math, his language arts, his science. I've got him started on a Spanish program that I used to use to teach Spanish to middle schoolers, Destinos, available at learner.org, and he enjoys it because it involves two of his favorite things: Sitting in front of a computer watching a video, and wearing headphones. He loves to wear headphones.

Next week, I'll start him on piano lessons. We were going to try to find a teacher to come to our house for lessons, but he's expressed anxiety about that. "I don't want someone I don't know to do it," he tells me. I know that we must do things to counter social anxiety, but right now, my priority is that he learn piano. So, I'll teach him that, too.

Meanwhile, we're still working on unraveling the Dubya conundrum. He just came home with his report card from the second nine weeks of school. Last year, his academic grades were excellent; lots of E grades (meaning "excellent") and very few S grades (for satisfactory). No D (for developing) or N (for needs improvement, sort of the D or F of elementary school around here).

This year, it's different. He brings home work with E grades all over it, but his report card is littered with S and D grades for academic work. We expect to see D assigned for "listens to and follows directions" and "demonstrates self control," but these S grades are irritating because we don't know where they're coming from. It's only first grade, so we're not concerned that "oh my God, his permanent record is ruined!" We're more concerned that his grades don't seem to reflect what we see him bring home or his clear abilities.

But that's not what really ticked us off this time. Our school has "specials" teachers, the teachers responsible for art, music, and phys ed. Generally, this part of the report card is a wasteland of automatic S grades--they can very rarely be moved enough to deviate toward an E, even for a child like Dubya whose art talent is, I'm gonna say it, exceptional. His art grades this time were straight S, all the way. But it's his "music" teacher who got my adrenaline pumping this time.

Dubya's already expressed how much he hates music class. I mentally comment but don't say out loud, "Thanks, lady, for inculcating in my son a hatred of music. Thanks. Thanks a lot." It's sad, really, because even in the Waco public schools in the 1970s, for God's sake, I had a fantastic elementary school music teacher, Mrs. F., who reminded me even then of the Louise Jefferson character from The Jeffersons and who lovedlovedloved music so much that we did, too. She put on great school programs that gave every child a chance to highlight a love of music even if perhaps the talent was absent in some cases.

Not so with Mrs. Crankypants at my son's school. And for 3.5 years, all we've ever seen in the "Music" category for grades is S, S, S. There's a place for comments, but the specials' teachers don't seem to use them. Until now. Apparently, circumstances became so dire that she was moved to make a special effort. Her comment: "Overall, Dubya does a good job in music class. However, he often talks too much and is difficult to redirect. He also doesn't raise his hand to answer questions and just yells out his answer. I appreciate his positive attitude and hope he can learn to control these disruptive behaviors."

Gee. So do we, lady.

In fact, we hope it so much that next week, he'll be receiving psychiatric and psychological evaluations and just yesterday, his therapist asked for a release to talk to his teachers at school. She also emphatically recommended the evaluations and said that Dubya is "complicated, very very complicated." She mentioned his flat affect and lack of emotional expression, and we talked about ASD and PDD-NOS. So, yes, we also hope that "he can learn to control these disruptive behaviors." Along with his severe anxiety, OCD, tics, intrusive thoughts and compulsive confessing, body bubble issues, social deficits, and other manifest and pervasive issues that plague him and worry us night and day. We're so grateful that the music teacher, in her first comment ever, saw fit to alert us to these problems and express her supportive wish that he will learn to control them. Phew.

You may have noticed that while TH is in homeschool, Dubya is not. Possibly, you've wondered how we work this out between the two without jealousy. Well...I've promised Dubya that if circumstances allow (jobs, living situation, etc.), we will start homeschooling in third grade, as we did with TH. Dubya finds this rational and practical. But reading that first-ever missive from the music teacher and seeing these grades for our son that are so different from last year's, watching him seemingly disintegrate more and more every day, I'm starting to think that third grade may be too late. This homeschooling thing is a slippery slope, is it not?

Homeschooling: Day 1

Wow.

I had to finish an editing job this morning, so TH did his reading (The Hobbit), his "free choice" (Mario and Wii, natch), and his indoor phys ed (Wii Sports, tennis today) while I wrapped up my work. Score one for flexibility and an easing into our first day of homeschooling.

We fired up our online curriculum planning calendar that k12.com keeps for us because we paid them the big bucks for their curriculum. I chose this curriculum because a friend uses it and did two months of research to find it and because it's one that many states use as their online school curriculum. If we ever go back to the "norm," I've got a solid ground for demonstrating his readiness. Texas requires that we use a "written curriculum" (although they do not check), and this one serves as our base and springboard for random exploration coupled with solid, classical learning.

Speaking of which, TH tested into fourth grade across the board, so we're using their 4th-grade curriculum.

Today, we did what I'd hoped we'd do. When one of our vocab words was "parrot-fish," we googled it, looked at images of it, talked about how weird those teeth/tusks/"beak" things were. There's that "random exploration." TH was in heaven.

Further, when we got to parts of today's assignments that required a lot of writing, I had him simply respond orally, as long as the target of the work wasn't written composition. Thus, when the math assignment called for him to write out numbers like 3,724,872 in words, I had him simply say the value out loud. When it called for him to respond to reading comprehension questions with complete, written sentences, I had him respond with complete, spoken sentences. I think a great deal of his weariness with school has to do with the pain--literally--of writing. For assignments in which written composition is integral, he will usually be typing.

We completed today's work in less than 2 hours. When we were finished, we took a nice walk in the beautifully chilled afternoon and talked random science facts--often from TH's seemingly endless cache of odd snake information--the entire time. I followed up with a few test questions about today's focus on declarative/interrogative/exclamatory/imperative sentences and rechecked his understanding of subjects and predicates, and we were finished.

That was our first day of homeschooling. It was everything I'd hoped--flexible, accommodating to his needs, instructive, interesting to him for the most part, and still retaining some structure.

Onward.

Walking in our shoes

I've got a lovely vacation post to write, but there's been another topic on my mind lately. What with the recent developments with TH and homeschooling, I've run into a familiar refrain that has become like nails on a chalkboard to me. The chorus goes something like this: "I don't see what the problem is. Boys will be boys. Kids have to deal with this stuff. It just doesn't seem like that big of a deal." Which would make sense, I guess, if this didn't involve girls, too, and weren't a clear case of bullying the hapless special needs child. Sorry to sound all victimized, but there you go.

Anyway, I've got a few friends who are also special needs parents, and we sometimes try to consider what it would be like to have only neurotypical children, to never experience the day-in/day-out adjustments and accommodations, the askance looks from strangers and acquaintances, the tensions about the future that are unique to special needs families.

And so I've been formulating my version of "You Know You're a Redneck When..." except it's "You Know You're a Special Needs Parent When..." and have resolved (not in a New Year's kind of way) to share it with you. I'm sure you've got your own idiosyncratic lists--as with all things autism, contents may vary.

You might be a special needs parent when...

1. You spend time and gas money avoiding driving past a plant nursery or oak trees to avoid daylong perseveration on buying a plant or collecting acorns or (other unifocal interest here).
2. You find yourself seriously searching the dirt for hours at the park for cast-off walnut shells or (other unifocal interest here) for your child.
3. You have to come up with reasons why your child cannot sleep with a boiled egg or (other unusual object of perseveration here).
4. Your every trip to the playground involves one or more of the following: (1) watching children taunt your child while your child doesn't "get it"; (2) watching children back away slowly from your child, eyeing him (or her) warily; (3) watching your child wander away from the "fun" to linger alone on the periphery; (4) watching your child closely, prepared to intervene at a moment's notice when your child transgresses the usual norms of human interaction; (5) watching your child be unable to play with the playground equipment because of motor deficits.
5. You cannot take your child to a birthday party, other person's home, restaurant, store, or place involving crowds without significant anxiety and often a premature departure, sometimes involving peeling your child off of a doorframe.
6. You are constantly aware in public places that people are looking at your child, and not because he looks like the Gerber baby.
7. You cannot walk into your child's classroom at school to volunteer without being bombarded by complaints from the children (or teacher) about your child's behavior.
8. You've wondered, sometimes daily, whether or not your child will ever be able to find love or marry or date or even be able to start a relationship.
9. You've tried to explain your child's flapping or vocalizing or odd behaviors to others, hoping that they'll understand and be less judgmental.
10. You've borne disapproval--spoken or not--from other parents, relatives, or strangers who blame your child's behaviors on your bad parenting.
11. You've had to hiss at a total stranger who has taken offense at your child's special-needs-related behavior and is loudly bitching about it.
12. You've had people accuse you of using your child's diagnosis/developmental difference as an excuse rather than as an explanation of your child's behaviors and experiences.
13. You've got another child who's not special needs, and you find yourself in daily wonderment by comparison at their unfamiliar social and emotional behaviors. You're amazed to learn that some children do play with toys in the "usual" way, that they do say, "I love you" spontaneously, that they can have a linear conversational exchange that makes sense.

I'm not wallowing in self pity here. I don't care that we live with the above--it's our norm. We live, we laugh, we love, and that's all I can ask. But what our son does and has lived through is not "boys will be boys" or "kids will be kids." It's not the result of overconcerned parenting or uberanxiety or overindulgence or a need for spankings or the lack of an iron hand. And unless the critics put on our shoes and walk that walk, unless they can relate to what I've written above, they simply have no idea what it's like to live it, day to day, night to night, social encounter to social encounter, atpyical behavior to atypical behavior. And until or unless they do, it would behoove them to keep their comments and assumptions to themselves and try to learn a few things. Ironically, empathy would be a good place to start.