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 firstname.lastname@example.org 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.)
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?
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