Pushing up our sleeves and telling our stories **Updated***

***Updated 11/09****
There's a blogpost down there where it got kind of heated. Ah, what's new, you say? Well, we did a post with what we love about our children. It felt good.

I was commenting in that heated thread to Craig that we didn't have his story, his son's story, without the overlay of rhetoric. I've pasted the relevant portion here. It's a call to all readers to share their stories about their children and autism. Without AoA talking points. Without rhetoric or ideology. Just the story. The details. Well, here ya'll can read what  I wrote:

Now, seriously. Craig, what's your story look like without the rhetoric from AoA, some of it I've conclusively demonstrated to be inaccurate information? Just your family's story. No theories as to causation. No AoA talking points. No hate, no rage. Just the story. The whole story.

How long has it been since you've separated the details from the narrative you've overlaid on it?

How long since you've just told the story without the goal of convincing someone about the vaccines, without going into the story half-cocked and ready for rejection?

Tell me your story, Craig. Tell me your son's story. What was he like? What was that night, after the vaccination, when he started running fever? What were the next months like? What happened? How did you feel? The story, Craig, and then I bet you, not just me, but others, like Kathleen, will be willing to share our stories, stories that don't deal with causes, but deal with the events. Let's see what we have in common without rhetoric and ideology getting in the way.

I'm going to start a new blog post for this. I encourage all readers to share their stories in this. If you need more space because the comment limit gets in your way, email me your story at wombles@sbcglobal.net and I'll put it in the main blog.

Let's do some work, folks, work that matters, that makes a difference, instead of the same old stuff.

(I recognize that the personal experiences, especially vaccine injury, cannot be separated from the details of the story, so if my request for the stories to not involve rhetoric or ideology was confusing, I apologize. If your child had an adverse reaction to a vaccination as Craig's did, it should be included --just note that adverse reactions happen within 24 hours generally, and most are immediate or within six hours, not this months later I remember my child got vaccinated and now he's been diagnosed.)

Craig's story:
Kim, honestly, that is a difficult thing to do considering that the injury was such a large and significant event in his life, indeed, in all of my family’s lives, that it is nearly impossible to separate it. I keep saying that the only way that people like Offit would acknowledge injuries like my son’s would be if the needle was still stuck in the arm when the reaction happened. Well, my son’s needle was pretty much stuck in the arm when the reaction happened. That’s how close the events were.

I’ll start with what he was like before. He was a little prankster. He used to steal the remote control from on top of the TV, turn on the TV, then hide the remote. While I would look for his new hiding place for the remote, I would hear him giggling. I have a fantastic picture taken a few days before his injury of him on our couch, remote in hand, big grin on his face. The little imp.

Every morning, we’d wake up to hear him calling bright and cheery from his crib, “Hi!! Want Out!” He’d run to the kitchen, chubby little butt waving, and holler “Eat, please!” We’d get him his breakfast, and he would cheerily say, “Thank you!” (though, it would come out sounding like, “Tank Tooooooo!”). He loved going bye bye! He’d get a big smile on his face as we’d strap him in his car seat, whispering, “Go Bye Bye” as we’d get his sister into the car. And then, he’d just chatter away a million miles an hour the entire time we were in the car, talking in his babbling little baby language, mixed with real words, telling us about everything he was seeing. He was so smart, so cheerful, so bright.

His last words to me before his doctor visit in March of 2003 were “Go Bye Bye” as I strapped him into his carseat. On the way home, he had fallen asleep, so my wife brought him in and laid him down. He woke up a few hours later and fussed a little, but my wife went in and changed him, and he went right back to sleep.

I didn’t really think anything of it. I knew that some babies felt a little off right after a vaccination, so I just went about my business. About 6 hours after he got home, he woke up and started screaming. Now, I’ve never heard anything like this before. It was terrifying; horrible screams that I can only describe as what it sounds like when a cat is tortured. I ran into his room, and he was writhing on the bed, his head back as far as it would go, his little back arched (I’m tearing up as I write this), fists clenched as he screamed and screamed. I picked him up, and he was hot. Burning up. My wife grabbed the thermometer. 104.2. Holy shit!!! We got a cool bath ready and tried to bring down his temperature, but that wasn’t working, and it was obvious that it was causing him severe discomfort.

So, we called his pediatrician. My wife was holding my son, rocking him, doing whatever she could to console him. Nothing was working. He would cry for a while, then start that terrible screaming again, arching his back. I was on the phone with his pediatrician, and it was so loud that I could barely hear him. I told him what was happening, how high his fever was, and he proceeded to tell me, “Oh, this is normal. Just give him some Tylenol and a cool bath.” WTF??????

This had been going on for over an hour, and my wife and I were frayed and shell-shocked. His voice was growing hoarse from all of the screaming. We checked his fever again. 105! Hospital time.

As I was getting things together, getting his older sister up and dressed, my wife started screaming. I ran into the living room, and she was holding him down on the couch. He had finally stopped screaming, but he was convulsing, his arms and legs flopping uncontrollably. He did this for a few minutes and finally stopped. At that moment, I didn’t care if people weren’t fully dressed or we didn’t have everything…we were going to the ER NOW!

On the way there, he had a second seizure. The whole trip was chaotic; a blur. We had to pull over to make sure he was breathing. Somehow, his silence was a thousand times worse than the screaming. We got to the hospital, and I remember running inside, this burning hot chubby little child in my arms. I honestly don’t remember the exact conversation with the Triage nurse, but I do remember that as I was getting them to take his temp, he had a third seizure. The only time I’ve ever been more terrified was when my wife’s heart stopped back in May.

My wife and I took turns. One of us would go out to the waiting room with my oldest daughter while the other one went in with my son. They gave him another cool bath and several medications to bring down his temp. They did a CT scan and saw the neuroinflamation. We spent the night at the hospital, neither my wife nor I sleeping.

The next day, his fever was down, and he slept. In his waking moments, he was listless and glassy-eyed. He didn’t want to eat or drink anything, so they had to give him intravenous fluids. He had to stay in the hospital for 2 days, and he remained listless.

When we got him home, we immediately knew something was wrong. The chattering was gone. His face was expressionless; no smile when he’d see us, no recognition. He wouldn’t pull up on anything or try to walk; he’d belly crawl to where ever it was he wanted to go. He’d lie in the middle of the floor on his back, staring up at the ceiling fan. He refused to eat anything unless it was really crunchy or really soft and smooth (pudding and yogurt). He lost weight. He would lay on the floor or sit with his back against a wall and just bang the back of his head over and over again on the floor or wall; so much so that there is now a permanent flat spot on the back of his head. Yes, my son went “Bye Bye.”

He stopped walking for almost a year. When he was 26 months old, he was diagnosed with Autistic Disorder. The doctors in Mississippi (where I was living at the time) didn’t really have much in the way of advice, only telling us to talk to other parents of autistic children. Soon after, he had gotten into the bathroom and crawled up into the bathroom sink. I walked in a few minutes later, and there he was, splashing away in scalding hot water. His legs were beet red, but he didn’t feel anything at all. Didn’t cry out, nothing. When he was 3, he burned his arm on the stove. Again, he didn’t even seem to feel it.

We brought him to numerous doctors and specialists, at great cost to us. The company I worked for wouldn’t cover any of his treatments because autism is a pre-existing condition. We tried going through the public school system in Mississippi. Ha!!! The final straw for me was when they told me that they wouldn’t help him anymore and that we needed to put him in an institution.

About this time, which was a little over 3 years ago, I started getting onto the online autism sites. Well, you know part of that story. I’d ask at doctor’s websites and science-based sites, saying that my son had a severe reaction to a vaccination and that I needed information and help. I won’t go into their responses, but let’s just way that they weren’t very nice. My son had been growing more and more violent; biting, hitting, scratching himself, pulling his hair out in clumps. One very nice lady on one of the newsgroups I was asking around on suggested Dallas, which had decent programs for children like my son. I had friends there, and well, none of the Doctors in Mississippi or Memphis were worth a shit, so I left a very lucrative job with the Casinos down there, and I moved to the Dallas area. I’ve been here since, and I don’t regret a day of it.

About 2 years ago, his violent fits got so bad that we had to put him in a mental hospital. I will tell you that it is one of the worst feelings in the world to have to hold your son down while they strap him to a gurney to prevent him from hurting himself. They suggested medicating him even more. Once, after he had gotten out of the hospital (that time), he had such a violent fit that I had to take him down onto the floor, his arms spread wide while I pushed his knees against his chest and rest my weight on them, holding him down so he wouldn’t hurt himself or anyone else until his rage passed. I am 6’4”, 230 lbs and built like a football player. He was maybe 50 lbs at the time. He lifted me off the floor!

We didn’t know what to do. He was in extreme pain from his GI issues. His stools were either really hard and brick-like, or he had constant diarrhea. There was no in-between. We took him to one doctor and they did several allergy tests. He was allergic to wheat, dairy, and sesame seeds (wheat and dairy being about the only thing he would eat). One person on AoA suggested that I meet up with Dr. Kotsanis in Dallas. We set up an appointment, and he suggested a change in diet. We went on the GFCF diet, then what Dr. Kotsanis jokingly calls the “Caveman Diet” (just meat and veggies, some fruit).

Within a week, the change was noticeable. His violent fits would wind down faster. He wouldn’t lean over a chair or the couch and grunt from the pain. Not long after that, my wife and I had gone out for dinner. When we returned, Nate saw me enter the door, gave a great, big smile (which were extremely rare for 4 years) and said, “Daddy!” (it came out sounding like “Da-eee!”, but we knew what he was saying). I melted; a great big puddle on the floor. I have no qualms about saying that I bawled like a little girl, hugging my little boy tightly to my chest. I was his 1st word in 4 years.

We’re starting to see my son coming back. Slowly and surely. He still has some fits, but they are nothing like they used to be. He smiles way more often now. He laughs all the time now, and his laughter is so sweet and pure that you can’t help but laugh with him. We can even see an echo of his former self; when we say that we’re going Bye Bye, he gets up from what he’s doing and heads straight for the door… it doesn’t matter if he’s dressed or not. He says more words now, but still not like he used to.
Anyway, that’s about it.

I hope that others will follow suit and share their experiences. I will share mine this weekend when I have some spare time. Much of it, at least regarding my bright boy, has been told in several posts over at Detritus. There's a list of hyperlinks on the right side of Detritus's page covering the personal posts.

Please remember that I'd like this to be supportive on this thread. Questions should be welcomed, if you want clarification on something. But this isn't about tearing people down; it's about finding the commonalities in our stories.

Thank you for taking the time to read this, and hopefully to share. It isn't just about parents, either. If you are an autistic individual, you know I welcome your stories any time. How did you find out about your diagnosis? How does autism impact you? How does society's reaction to your autism affect you?

Corina's story:

oh dear, Kim, you're asking a writer to tell her story? I'll have to keep it to the cole's notes version then :D According to what I know:

I was born, perfectly healthy, a few days earlier than expected, and so was delivered via emergency C-section (I also share a birthday with Johnny Depp, something I just learned this year). I was colicky and had something wrong with my stomach flap. Not a lot of the medicines worked.

I know that when I was a baby, my parents took my brother and I to Mexico. We traveled quite a bit. My mother and father are third-culture children, and so believe that early learning of different cultures encourages more mutual understanding and sense of tolerance.

I didn't speak until I was 2 1/2. My first words heard by my mother were on the behalf of another child and were "the baby wants milk."

My brother had violent rages, and was capable of throwing solid wood dressers across the room. Locks were put on our doors and I was taught to hide in my room with a book. I refused to read in the presence of my brother, who didn't learn how to read until grade 6.

When my brother was tested and diagnosed with ADHD and "gifted" Learning Disability, my mother tried to get me assessed as well. I was casually tested and diagnosed with ADD.

Physically, I was under-developed, but kept up with my age group.

My school tried to hold me back in Kindergarten because I was not socializing properly with the other students, had difficulty with transitions, was easily startled, and would curl up in the corner with a book rather than participate in group lessons. My mother refused to hold me back, pointing out that was no reason to keep me from my age group, since my schoolwork was definitely passing.

From grades 1 to grade 3, teachers noticed different concerns over socializing, transitions, and schoolwork. One teacher mentioned I laughed at the more mature jokes she and the assistant teacher told each other. Another seemed determined to have me labeled as a behavioural problem, and tried on a few accounts to use me as a scapegoat in the classroom.

I also had headaches that seemed to get worse and better throughout the day. It was generally considered that the headaches were stress-inflicted. I didn't have the words to describe how they would get marginally better, and then suddenly get worse. I knew words, but didn't know how to use them to explain.

I went to speech therapy for "slushy and immature speech", but in junior high stopped because I refused to go.

Because I wanted to learn the violin, my mother had me take piano lessons so that I knew the basics.

Throughout school, I was noted for high reading skills, creative writing and art. The other subjects... fluctuated.

Due to bullying in the public school, I was transferred to a private school, where I still felt like an outsider, stumbled over social rules, and was generally considered "quiet", "shy", "likes to read", and "nice". I still friended other outsiders, some of which were from troubled backgrounds which I tried to help beyond my limitations.

There was also an interesting scenario where the mother of one of my friends, at the science fair where we were working together, told me not to speak to her daughter, and even attempted to get the school to keep us apart. To this day, I have no clue what exactly offended her or caused her to do so.

I began to learn the flute, and was taught by a professor at Queen's University. I played with her university students.

In 1997, my grandfather died. This sparked the beginnings of the depression, full out anxiety and panic attacks that arose in high school.

About this time is when I heard about my brother and my diagnosis, and the fact that the doctors who assessed us had told my parents that my brother would not finish school, would not learn how to read, and would be practically institutionalised for his entire life, I thought "if that is what they expect of him, the 'gifted' one, then how little did they expect of me?" I then became determined to show "them" wrong, that I was not "lazy" or had anything "wrong" with me.

In high school, seeing it as a fresh start, I attempted to "fit in" for about one term. Being unable to keep up with the changing loyalties of the "in" crowd, I detached myself from that crowd, and once again found friends and acceptance in the "outsiders group", those who really didn't fit in anywhere or was predominately "in" a group.

I changed churches, and found a better faith community that allowed me to start getting over the grief from my grandpa's death. It helped me to pull out of suicidal depression.

In the summer between grade 9-10, I was re-assessed and diagnosed with ADD and Learning Disabilities. Mom had this done so that the high school would give me an IEP. After being without one for so long, it took me to grade 12 to be able to feel somewhat comfortable with using my accommodations, due to the stubborn fact that I was determined to prove that the doctors who originally assessed my brother and I were wrong (never mind that my brother is doing a perfect good job doing that by himself. Honor Roll, Ontario Scholar, two undergrad degrees and currently working on his Master's. Didn't read till grade 6).

I had half-believed the claims that I just needed to work harder, alternating between "nothing wrong, just lazy" and "defective".

In Grade 10, two things happened. One, I suffered from disabling headaches, rapid loss of appetite, and was extremely weak. After a weakening and extremely painful headache during March break, my blood was tested and I was diagnosed with Chronic Iron Anemia.

Two, the worse of my panic attacks started to occur, having grown worse over the years and fueled by sensory overload and social demands.

Other than the bright moments in friendship, a The Tea Party concert, high school was, in short, hell.

After a more severe panic attack, I was referred to a psychiatrist, who tentatively diagnosed me with Aspergers in 2002. Things started to click into place. I highlighted blocks of text in books and presented them with a note "this is me". Accommodations were then adjusted to fit better. In 2003, the diagnosis was made official. Despite recommendations that I remain in high school for another year to "mature", I graduated from high school on the Honor Roll, as an Ontario Scholar in 2003, and recieved the Online Outstanding Student award.

In the summer of 2003, I went to a transitional program that was online, run by a university and a college. There was two weekend camp-classes on campus. During the first, the school's psychologist/counsellor (?) tried to convince me that I was not autistic, that I was missing social cues due to ADD. She didn't address the other issues that make up an ASD diagnosis. I went home disturbed, and told my mom. We pulled me out of the program, and with the special needs teacher at my high school, I went to a different transitional program in Ottawa, staying there for a month, making friends with other special needs students (whom we had much in common) and refining my accommodation needs.

That summer I also started posting webcomics online. That fall I started blogging on LiveJournal.

After six years of struggle, over-doses of medications, panic attacks, meeting new people, 3 years of living in dorm, 3 years of living in an apartment, fulfilling duties as Media Coordinator for the on-campus Sci-Fi and Fantasy club, and the rest of the fun of university, I graduated from Wilfrid Laurier University with a Bachelor of Arts in English, on Halloween 2008.

After a four month stint working in a call-center, and close to eight months in a department store, I decided not to pursue my Honor's degree or my Master's, and chose to move back home to take college courses online.

So far, that's the brief story of my life.


~Corina/Neko no Baka

No Stereotypes Here



Emily said...

Craig's story is terrifying, and exactly what I feared every time one of my children was vaccinated--that there would be this horrible, acute, unpredictable reaction for my child when millions of other children come through it with nothing more than some soreness. I have nothing but sympathy for that horrible experience and the sequelae. In my mind, this is what the vaccine injury courts are for. He and his family are in my thoughts, and I hope and hope that his son's improvement continues.

Emily said...

With that said...I've chronicled some of our early experiences with TH. We had no apparent trigger--he just seems to have been born as he is. From infancy, he was "unusual," including with motor delays and other signs that in retrospect we now see were clear indicators. From ages 1 to about 4, he had epic meltdowns with unidentifiable causes, extreme anxiety accompanied by terrible constipation, an utter inability to engage in social interaction with other children, almost absent use of pragmatic/expressive language but much echolalia, flapping, stereotyped behaviors, no playing with toys, just lining them up, etc. Every social situation was an edgy nightmare, every potty experience a trauma, any accidental drive-by of a plant store a trigger for hours-long meltdowns (plants were his obsession), as was saying the word "strawberry." He slept with a boiled egg and obsessively collected thousands of acorns and perseverated on them to our distraction. His fine motor skills and some gross remain very delayed.

A speech therapist who evaluated him referred him for evaluation by a developmental pediatrician, and she's the one who diagnosed him with autism.

cawill said...
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leila said...

In my opinion, the trigger for those regressions are not the vaccines per se, but the high fevers. Those fevers could have happened as a reaction to a shot or due to a flu or other virus or bacteria.

leila said...

Craig, I just read your comment about your recent scare with your wife. I'm sorry about everything both of you have been through. I hope things get easier for you from now on.

cawill said...
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Dawn said...

Craig: Thank you for sharing that. And how terrifying for you and your children when your wife had her heart attack. But wonderful that you kept your cool and did CPR, even thought I am sure you were a mess mentally.

I agree with Emily. From your story, it does sound like the vaccines triggered the fevers which triggered the seizures and the neuroinflammation. I'm sorry that you can't go to the vaccine court; it is for you, your son, and actual vaccine injuries that it was created for.

And let's be honest...not ALL autism is vaccine injuries. Can it be triggered? Possibly, as the cascade your son experienced showed. Is it the only cause? Doubtful...if your son hadn't had the reaction, he may not have regressed the way he did, or may have regressed anytime he became very ill. High fevers and seizures are scary.

And your treatments are not "out there". You are treating your son with diet due to allergies; he is feeling better and can develop. How wonderful that is! May he continue to improve as much as he has. I will be cheering you on.

AutismNewsBeat said...

I'm sorry that you can't go to the vaccine court; it is for you, your son, and actual vaccine injuries that it was created for.

Yes, this is true.

kathleen said...

Thanks for that Craig. I think-to me, hearing that story-well reading it :) ...Had I had access to stories like that when my boys were babies-I would not have felt so alone. I'm hoping many people come by and read-This can effect change-this can give a parent hope-This will tell people-yes you were scared, probably on some days still are-but you persevere-and your son, your wonderful son..he grows and develops-and he is loved, and in turn you know that you are loved. It is hope Craig-not vitriol-hope. Thanks.

cawill said...
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KWombles said...

Anger consumes you even as it fuels you, Craig. I understand the despair, the fear, the pain, the heartache. I really do. I understand the need to lash out and make someone else hurt as bad as you do, to want to make someone pay.

I understand what it's like to have a child who's fine (well, relative, he did have autism before the stroke), and then in a moment, in the blink of an eye, he's lost his speech and he's paralyzed on his right side. I watched it happen, I held him as it worsened, as we rushed him to the hospital, as we watched as it grew worse over a couple of hours and then held steady. My husband and I held our son, held onto each other, as the doctors worked to figure out what was going on, and why. It took over a week before they told us it was a stroke; he got no therapies whatsoever in the hospital; they sent us home, with his speech still gone, his right side still partially paralyzed, and with not an answer one. It took six months of testing to find out he had a blood clotting disorder; it only took a few days to find out that there was a possibility the medications he was on to help with some of his behaviors and issues could have helped trigger the stroke. He never took another one of those three meds again.

So, I get feeling bitter, feeling betrayed by the doctors you trusted to help you help your child. I also get that this anger detracts from your life and your child's. That anger eats away and consumes all the joy that is there waiting for you to have.

My son got royally screwed by the medical establishment. It wasn't intentional, but it happened. It's happened personally to me, as well, and I'm certain to hundreds of thousands of us. We get a seriously bum deal; we didn't deserve it. We may have done everything we can to avoid it. And still it bites us in the ass.

So, what do you want your legacy to be? What do you want to model to your children?

Anger has a place, has a time. But there comes a time to let the anger go, to seek understanding instead. You cannot make a difference with rage, not the kind of difference you want to. And when you dismiss others as less than human, you lessen a part of your own humanity.

There are other ways to fight the battle, Craig. Other ways to fuel your soul to keep going. And you've got friends out here who would stand by your side and help you find a better way.

David N. Brown said...

I suspect that the most common cause of injury in vaccination is accidental infection from the needle. This would be the simplest explanation of your son's fever

AutismNewsBeat said...

That seems more likely than the vaccine itself. A child whose immune system is too weak to handle an attenuated virus or two has bigger problems than vaccines.

Roger Kulp said...

I am sitting here having a major "WTF?" moment as I read this.What happened to autism as a "natural variation" that makes our lives such a joy? A parent whose child developed severe autism after a vaccine-induced fever?Allowing said parent to badmouth Paul Offit in a blog post? Doesn't this uneducated rube know all ND bloggers bow at Offit's feet,and worship the ground he walks on?

And allowing this parent to say he treated his son's autism with the quackery of a GFCF diet?????!!!??

The blasphemy!!!!!This man needs to have his child taken away!He's robbing the poor kid of his God-given identity!! Just ask Kevin Leitch,Michelle Dawson or Ari Ne'eman.

And on top of that,you tell us your son has been damaged by doctors? No it can't be.That only happens with DAN! quacks who push HBOT and supplements.Not doctors who practice good science based peer-reviewed medicine.

Something must have happened.Maybe you ought to tell your own story first.Letting it all out is theraputic,

KWombles said...


I'm having my own WTF moment. I rescind the ban, give you another chance, and you prove once again that sometimes an ass is just an ass.

You miss the point, but I think you do that on purpose.

I don't expect anyone to idolize another person, and I've covered more than adequately in other places where Craig's information on Offit is incorrect. That wasn't the point of this blog post; the point was his story.

And I've told my story before; it's what Detritus is for. And I've told it here before.

I'll note again. Sometimes an ass is just an ass. And you've been so here one too many times. There, I found that quite therapeutic. If you can't be anything other than an ass, you can post elsewhere.

Thelma said...

Dangitall ta hell an back, who's Roger callin an uneducated rube? Craig or Kim?

AutismNewsBeat said...

It doesn't matter, because if Roger believes something is true, then is must be true. We all create our own realities, none of which ever come in conflict or contradict each other. And anybody who questions a private reality is a cowardly dog who deserves to have his leg humped in a dark alley.

At least that's why I'm getting out of this.

Louise said...

Well hell Roger! Ya IS lookin for a rosy red beehind aint ya! Ima tellin ya true boy, ya don't have ta go round rilin people up ta git one. Come ta Vegas, You'll find what ya need. Yee ha and a side 'o buttcheeks ya will!

cawill said...
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KWombles said...

Thanks, Craig. :-)

I think we are having a constructive conversation here, one that disproves the polarization that many involved in the online community would have us believe is the only way.

If we're all squarely entrenched onto one arbitrary side, if we allow others to pigeonhole as Roger continually attempts to do, we lose the ability to have rational, supportive discourse.

Our children are going to grow up and in one fashion or another go into the wilder world. If all we do is focus on divisions and screaming at each other, then we don't make the world a better place for our children.

I think that rational, reasonable, and relatively calm discussions are the best way to get to the commonalities of experiences as well as the commonalities of goals. It also allows the best chance for self-reflection for all of us. We have to be able to reflect, learn from our errors, get better at getting to the facts and the truths, as best we can, even if those truths are that we have to move forward without concrete answers or directions to bring about the needed change.

And we have to calmly hold people on both sides, all sides, of the community accountable for lies, accountable for bad behavior. Now, sometimes that means nothing more than noting the behavior, reognizing the situationality of it, and moving on.

We are none of us saints. We have to work harder at not demonizing and degrading those who see the world differently. Because honestly, when we do that we are no better than the bullies who would harm our children. If we have bullies in our midst, we have to agree, regardless of our ideology, that the bullying is unacceptable.

So, my thought is we keep our sleeves rolled up, and we keep working hard to find solutions to the problems we face and our children face while working just as hard to be kind to others, somehow balancing the need to adress those who bully without resorting to their tactics. Tall orders, undoubtedly.

davidbrown said...

I'm not sure what you mean by "overdrive". If you mean to suggest some version of the "vaccine overload" notion, that has already been discussed and discounted.

The "bad lot" suggestion falls on something of a slippery slope. Down further in that direction would be those who suppose that thimerosal-containing vaccines from before ca. 2001 might still be in circulation, which I consider an "urban legend" (on the same vein as tales about decades-old Twinkies). The simplest explanation is a prosaic infection. This could have occurred from improper storage or handling of a needle. I have also heard of it happening when the skin is not sterilized first.

cawill said...
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Corina Becker said...

Kim, my story won't fit in the box. Emailing it.

David N. Brown said...

Sorry, I guess I mixed up your handle with another commenter.

If your son's arm was swabbed, and you are reasonably sure the needle remained sterile, that covers the major sources of infection. But that doesn't rule out other sources (including other children).

To me, fevers and seizures suggest different causes: infection in the former case, a possible allergic or other metabolic reaction in the latter. I would also like to say a major reason why I am concerned about the infection issue is that it is most likely to happen outside the US and comparable western nations. For example, I think it is very likely that vaccination (by injection) has contributed to the spread of HIV in Africa. One of the biggest problems I have with typical vaccine critics is that they focus on alleged problems in the "first world".

KWombles said...

Gotta ask, why is Ken Orac's dog? I haven't noticed many (any actually) comments by Ken at Orac's. You comment there, I comment occasionally, so why that reference?

I think there is sufficient merit to Craig's story to take him at face value (when you get the story not surrounded by the AoA inaccurate information) to believe it more than likely that vaccination was the cause of his son's illness/brain damage. Whether this caused the autism he was later diagnosed with, exacerbated an underlying, previously not recognized autism is beyond my knowledge and pay grade.

I can accept and acknowledge Craig's family's horrendous experience while noting that the accepted research does not indicate a link between vaccination and autism itself. I don't have to decide one way or the other on Craig's son's autism and I can support him and his family in their journey to find help his son have the best outcome.

What I ask of Craig is not that he deny his son's story, their experiences, or I wouldn't have asked him to share it, and I wouldn't be offering my support for him and his family, but that he critically, calmly and objectively examine the evidence that where he has previously found a supportive environment might not in fact be the bastion of truth and light that he thinks it is.

I'm not asking him to denounce them. It'd be nice if he'd note their factual errors when they occur; it would be nice if he released some of his anger because I think it would be psychologically and physiologically healthier for him.

And it'd be nice if somehow Ken and Craig both came to a resolution to calmly look at their relationship and agree to disagree without demonization of the other.

But, I acknowledge I am a pie in the sky kind of gal. :-)

Truth cannot be found and mutual respect cannot be otained if we're demonizing each other and painting the other into a corner.

cawill said...
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Nostrum said...

Our son was premature, just like his older sister. He had speech delays, just like his older sister. So in that sense, he did not alarm us initially.

He was also a very contented baby. He generally slept very well. He seemed mellow in situations that would be too boring for other kids - like you could take him to a restaurant and sit him in a high chair, and he'd entertain himself while you talked with your friends. When you drove him somewhere in the car, he never complained about being in the car seat, and he often wouldn't even notice when you opened the door.

And although all the breastfeeding experts would disagree about it, I think he was unable to tell when he was hungry full at the breast. It really seemed like I was the one offering and ending all the nursing sessions. He didn't seem to care either way. He doubled his weight in a month after he came home from the hospital, and in spite of the ease at which I taught my daughter to sign to nurse, he never learned.

I've got a video I posted a while back. You can see what I think now is abnormal eye contact, but without a cohort of typically developing children, I'm not sure how parents are supposed to see these things.

We were in Parents as Teachers, and they recommended a screening at 18 months for general development (he still didn't have any words) she was floored later when we told her he had autism. We had a speech therapist who was more than willing to brush aside our concerns as he meticulously lined blocks up in front of her. "Oh," she said, "We like children to be able to do that." We were happy to live in denialville.

His pediatrician, who only sees him for twenty minutes at a time, was the one who referred him for screening.

And by the time that happened, I pretty much figured he was right.