More Beautiful Than Tragic

Here is the new video I made with the iMovie program. Let me know what you think :)

More Beautiful Than Tragic

Coming soon......

I made this video during an Apple training seminar I was at for work. We had about 10 or so minutes to "play" after he taught us how to do it. I can't wait to spend some more time with the iMovie program!

How many times can one heart break in a lifetime...

Lets be clear about one thing. I understand that things are probably not as bad as I feel like they are right now. I am grateful for what I have with KC. I am very aware of how lucky I am that he does as well as he does. But I can simultaneously feel lucky in that way, while I also break inside in other ways.

KC had an appointment today with his Neuro-psychiatrist.

Dr. NP (short for Dr. Neuro-psych) told me at our last visit that while Dr. Neuro may have run out of options to treat the seizures, we have only just begun opening up Dr. NP's bag of tricks. We have many more options. I felt great hearing this! And, as it turned out, the slight med tweak that we did at that appointment bought us a month or so of the best progress we have seen yet with KC. Huge language burst, calmness, etc. All hitting, throwing, and self-injurious behavior ceased. He began coming when called, consistently!! It was nothing short of amazing. My Mom took KC to the Zoo and described it, with tears of joy in her eyes, as feeling like she was taking her typical grandson to the Zoo. He stayed near her with no leash or stroller, waited in line, no meltdowns. It was a beautiful thing.

I knew the whole time that this would not likely last. I tried like hell not to get used to it. I expected some back sliding and felt that I was safely guarding myself. I was wrong. What I did not prepare myself for was for KC to suddenly loose all of his new skills, and behavior and end up further back than he was before we started the risperadol. Pretty much overnight. For the last three weeks I have been wracking my brain trying to understand how this could have happened. I am trying everything I can think of to help him get back on track.

I emailed Dr. NP, who responded with something like "Karen I am sure we can figure out what is going on and find a way to help KC. Come see me". So, I made the appointment! I went in today hoping against hope that he was right. I felt almost desperate. But hopeful.

The first hit I took was the fact that Dr. NP was NOT EVEN IN TODAY. He pawned us off on some doctor I have never even met! We did see the resident prior to seeing Dr. Whoeverthefuckheis. She was kind, and gentle. We discussed some OT options with regards to stimulating KC so that he will not continue to claw at his eyes constantly. We need to do something before he does serious damage to his eyes. As it is, each night his eyes are red, swollen and watery from constant poking. She had a few suggestions about possibly putting KC on an anti-depressant to try to help with behaviors. We talked for quite a while, but she never really said why this happened in the first place, so I asked. Teary eyed, and desperate. "Why is this happening, and how can we keep it from continuing? Her answer? It was in a soft, kind voice:

"Its just the nature of the beast"  She later went on to say "These types of emotional issues with be lifelong for KC. The trick is figuring out how to manage it."

 And it felt like a blow to the chest.

I have been told more times than I would like to remember, that this is just how it is with kids who have IS and autism. And it kills me. Because I have seen him when he is not like this. I get these glimpses of a little boy who does not have to struggle for every fucking thing in his life. I get a view of a little boy who can function well, and can be happy. So why the fuck should I have to accept the fact that this is just how it is?! Its NOT. It can't be. After all these years of fighting, it can't be that this is how he is going to be.

And honestly, I don't think she meant it how I am taking it. I think she meant that he will always struggle with it, but eventually he will figure out how to regulate it better. But she doesn't know for sure. No one does. Maybe it was the kind, almost sad look she gave me when I so desperately asked her how we fix this. Like a doctor telling an unsuspecting patient that their disease is terminal. His isn't, but right now it feels that way to me.

 Many other doctors have told me the opposite...he WILL be ok. He is smart, he has a lot of advantages that other kids in his boat don't have. But what I have been seeing in him lately is scary. He is getting worse. He is falling further and further behind other kids his age. He has never been close anyway, developmentally, but now it is way more obvious. Some behaviors are likened to a 18 month old, some more like a 2 year old. He will be 5 in October. And yea, I get it that in some ways I am lucky to have that. But I got to see him progress SO much, and the sting of seeing it all taken away is so raw.

I think that in some ways, if he was just always worse off, it might be easier. Only in some ways. Obviously in other ways it would be harder. But this here is a special kind of hell. Because I am constantly shown how much better he could be doing, only to have it ripped away. Every. Fucking. Time. I don't know how I can go on hoping, believing. It hurts so bad.

I am terrified. I am scared that this is always how it will be. He will stagnate around 2 years old and never get better. Or, even worse, he will progress and loose it all. Time and time again. What if nothing works? What if he can't ever be independent? Again, typical things with IS kids, but all these years of having the possibility of it not being this way being dangled in front of me. Its cruel. Life can be so fucking cruel sometimes. For him, my sweet baby. His own body betrays him constantly and he has to suffer the consequences. He is such a good person. He doesn't deserve this. And for me. This pain I feel right now, I have felt many times before, but it never gets easier. It does come a lot less often than it used to, so that is good. But it hurts just as bad when it comes. Words (even though I typed a lot of them) don't do justice to how sad and scared I feel right now. I hate it. No one can promise me that he will be ok. So, sometimes I just have to take a long hard look at the fact that things just might not turn out ok. Its a hard thing for a mother to deal with.

This despair I feel right now won't last. I will work through this pain and go back to dealing with things more rationally. I just have to process it in order to let it go. It just hit me hard this time because I really wasn't expecting it. One thing that will never change, is how much I love my son. He is everything that matters to me in this world. I read a quote today that seems so fitting : "This world was never meant for one as beautiful as you"       And its true. Its not him that wasn't meant for this world, its this world that wasn't meant for him. But he is here, and he's mine. And I will fight until the day I die to give him the life that he so richly deserves.  

I recently read an article, and I wanted to sum it up and give you some main points, but I am falling short and feel like you need to get it directly from the horses mouth. I will post the parts that I find importnat, and I will link the entire article so you can read if you choose.. I would specifically pay attention to the part that talks about how the Vaccine court works...how quietly it works.

Judy Converse, MPH RD LD, May 10, 2011 writes...

When we have our babies, we feel safe because we have vaccines. We regard them as no less than life-granting elixirs of modern times, the dividing line between a safe and secure health trajectory for our kids, and certain death from diseases of yore.
But cracks in that comfortable veneer have definitely formed, giving a sense of the inevitable to what was once inconceivable. Have we tapped out the usefulness of vaccines? Are they more harm than good, as we now use them?
And now this. A cluster of parents who managed to survive Vaccine Court – a little known corner of hell reserved for those whose children are injured or killed by vaccinations – have banded together to speak out. Vaccine Court is where you end up if you know enough to file a claim for a child’s vaccine injury. Since the pharmaceutical industry won itself protections against any liability for injury law suits in the 1980s, and since the Supreme Court solidified this protection by removing parents’ rights to pursue civil court appeals just this year, families are left to make claims with the government when the unthinkable happens to a baby or child who is dutifully submitted for shots. For twenty-five years, a tax added to the sale of each vaccine has paid into a fund to take care of these children. That is, if parents know of and pursue their rights, and if they prevail in this court system.
For years, at the same time we’ve heard assurances that vaccines are safe, the federal government’s Vaccine Court has quietly paid millions to families whose children suffered devastating brain injuries from routine shots. “Quiet” is the operative word here, as parent Sarah Bridges, who holds a PhD in psychology, explains: She was advised “very routinely” by her lawyer to “be careful talking about this” lest her son’s custodial funds evaporate. At risk of losing their hard won compensation – these cases have been gagged for a quarter century – parents are now speaking out, and revealing that their children were the canaries in the coalmine. Ms. Bridges’ son for example, who is now seventeen years old, has mental retardation, epilepsy, and autism thanks to infant vaccinations, and lives in a care home wearing a diaper and a helmet thanks to the compensation program paying for it all.
This is bad news for anyone who feels unsafe without vaccines.
I don’t feel afraid without vaccines. Even with a master’s degree in public health, and years of university training in health sciences, I am relieved to see what may be a tipping point here.

Meanwhile, more integrative medicine strategies evolve every year – tools that rely less on drugs and surgery and more on whole organic foods, reduced toxins, nutraceutical strategies, or other modalities. Witness the success of vitamin D in preventing and shortening course of flu, for one small example out of hundreds, that illuminate the potential of pharmaceutical and toxin-free strategies to minimize infectious disease.
These strategies tend to be unpopular with the medical press and our government health agencies. What that means is that if the bloom is off the vaccine rose, they are going to be the last to admit it – but that’s another blog. In the meantime, be a smart health consumer for your own babies and kids. Read alternative views on vaccination, tap providers trained to engage nutrition-focused tools for healthy immune function. If you want to opt out of the vaccine schedule in whole or in part, you can
-  Check your state’s mechanisms for vaccine choice by clicking here.
-  Switch to a family practice physician, osteopathic doctor (DO) or a naturopath (ND), if your pediatrician is coercive about vaccines beyond your comfort level.
-  Read Special Needs Kids Go Pharm-Free: Nutrition-Focused Tools To Minimize Meds and Maximize Health and Well Being, even if your kid isn’t diagnosed with a special need. See the chapter on avoiding infections, and the section on working with providers to help you through infections when they occur.
We all owe a debt to the 83 Canaries, the children the government did not want you to know about who have been thrown under the vaccine bus. Their parents are speaking out, and according to Mary Holland at the Elizabeth Birth Center for Autism Law and Advocacy (EBCALA), it’s just the tip of the iceberg.

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Visit  http://nutritioncare.net/blog/2011/05/10/vaccines-83-canaries-obsolete/

 To get the rest of the article.

Why the Debate Continues...

 The Autism-Vaccine Debate: Why It Won't Go Away

David Kirby-Author/Journalist

 

I have been speaking to young parents in my neighborhood of Park Slope, Brooklyn lately about vaccines and autism, which science and the media have once again pronounced as completely debunked for what I believe is now the sixth or seventh time.
These are highly educated, affluent and politically progressive people -- doctors, lawyers, entrepreneurs, writers and other successful professionals. And like half of the American population in one poll, many of my neighbors (though certainly not all) say that there is, or may be, an association between autism and the current U.S. vaccine schedule.
Although some Park Slope parents refuse to vaccinate their children at all - an unwise and dangerous choice in my opinion -- the vast majority makes sure their kids get immunized; although many do so on a schedule worked out with their pediatrician.
In general, it is the most highly educated parents who are now eschewing the CDC schedule and vaccinating their children at a different pace. In one recent presentation of data, for example, mothers with masters degrees were significantly more likely to forego the Hepatitis B vaccine birth dose than mothers with an 8th grade education.

Why do so many educated, successful parents still believe that the current vaccine schedule can hurt a small percentage of susceptible kids, and that some of those injuries might result in an autism spectrum disorder (ASD)? Despite all of the population studies showing no link, high-profile court cases that went against parents, insistence of omniscience by health officials and the public mauling of Andrew Wakefield, I don't think that many people around here have changed their minds.
That's because evidence of a vaccine-autism link did not come to them via a 12-year-old study published in a British medical journal, nor from Hollywood celebrities: Not very many had heard of Wakefield until recently.
Some of these parents actually keep up with the science, including a new review of autism studies in the Journal of Immunotoxicology which concludes: "Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination."
Some of their evidence also comes from life -- from friends, family and business associates whose children had an adverse vaccine reaction, got sick, stopped talking and never recovered.
It's a fact that many children with ASD regressed following normal development just as they were receiving multiple vaccines at regular doctor visits. Health officials say the timing is entirely coincidental.

Regression usually occurs between 12 and 24 months, though one study found that some children show signs of autism as early as six months, but never before that age.
By six months of age, most U.S. children have received about 18 inoculations containing 24 vaccines against nine diseases. Over the next two years or so, they will receive another nine shots containing 14 vaccines against 12 diseases.
So whether a child regresses at six months, or 18 months, the tragedy happens during a period of intensive vaccination. In many cases, parents report that the child had an abnormal reaction after being vaccinated (seizures, spiking-fevers, diarrhea, lethargy, high-pitched screaming and/or other symptoms).
The temporal association might be coincidental, but for many autism parents, now tens of thousands in number (but certainly not all parents), there is nothing to dissuade them: they are certain that vaccines harmed their kids. I have spoken with thousands of them personally. Their stories of regression are hauntingly similar, describing a childhood catastrophe that was virtually unheard of when I was growing up.
These parents, and grandparents, naturally share their stories with brothers, sisters, friends, coworkers and the media, and before long half the population is questioning authorities who insist that there is zero chance of any association whatsoever.
Every year, thousands of new parents go through the same ordeal, which is why belief in a link is probably going up, not down. Sadly, this will continue for years to come as more and more parents join the ranks of the devastated but convinced. There is nothing that anyone can do or say -- not you, not me, not any scientist on earth -- until definitive proof of all the true causes of autism is found. But that appears to be years, or decades away.
Parents who say the vaccine-autism link has not been debunked are, like me, hardly "anti-vaccine." Why on earth would anyone not want to protect children from dangerous diseases? That is the epithet hurled upon most of them anyway. And it's what people will say about me as well, even though, as I said, I think parents should vaccinate their kids.
What's curious is the selective use of the "anti-vaccine" accusation. Few people call Dr. Bernadine Healy, former head of the NIH, "anti-vaccine" for not ruling out a possible link, and calling for the study of the children who actually got sick.
I have never heard it used against Temple Grandin, who said there should be "a closer evaluation" of vaccines and autism and echoed Dr. Healy by adding that, "These children should be carefully studied to determine when and why they lost language, and if factors such as vaccines and genetic predisposition may be causes."
And I've never heard it used against the many Somali parents of children with autism living in Minneapolis who said they are convinced that vaccines played a role, and will be telling that to CDC and NIH researchers who are trying to find out why the rate among Somali children is reportedly about 1-in-28 in that city.
Most parents in Park Slope are pro-vaccine, which is why they vaccinate their kids. They know the answer to the question, "Could vaccines be involved in some autism cases?" is not "Stop vaccinating all children now."
Instead, like me, they believe that more children today are more susceptible to vaccine injury and other environmental triggers, thanks to toxins such as heavy metals, air pollution, pesticides and a universe of endocrine disruptors unleashed into the environment. Other risk factors might be at play, such as vitamin D deficiency, parental age, closely-spaced births, caesarian births or even the stress of everyday life.
Such factors, both pre- and post-natal, might harm mitochondria, damage DNA and potentially result in immune and autoimmune disorders. These problems could then, in turn, increase the risk in some genetically susceptible children for early life problems like complex febrile seizures, myelin damage, and what has been called "mitochondrial meltdown." All three have been identified in medical journals and/or the U.S. federal Vaccine Court as plausible triggers of regressive autism. And all three can occur with, or without, vaccines.
They should be studied more, in my opinion.
The answer is not to stop vaccinating -- that would lead to widespread disease and suffering. The answer is to find out which children might be particularly susceptible to which vaccines, vaccine combinations or vaccine ingredients, and devise a schedule that is individually tuned to their specific conditions. This will build parental trust and strengthen, not weaken, the national vaccine program.
Even the CDC states:

Although some may call it a "one size fits all" approach, the recommended vaccine schedule is flexible, and it does account for instances when a child should not receive a recommended vaccine or when a recommended vaccine should be delayed. Those decisions, however, are best made in consultation with the child's doctor, and parents shouldn't be reluctant to have such discussions.

Until science can tell parents which children are most genetically vulnerable to neuroimmune injuries, more people around the country will probably "go Park Slope," if you will, and devise their own selection of vaccines at their own chosen schedule.
One hopes they proceed with great caution. For example, spreading out vaccines within the same series might confer less immunity, though we don't know because this has not been thoroughly studied.
Some parents might also skip the triple live-virus MMR vaccine altogether, because the manufacturer refuses to offer separate measels, mumps and rubella shots. Offering this simple choice alone might boost immunization rates by a couple of percentage points, so why not do it?
I have never agreed with the "anti-vaccine" movement, whose size and influence has been somewhat overblown by the media. Vaccination rates remain high. A recent wave of whooping cough in California occurred largely among vaccinated individuals. In fact, unvaccinated adults may have played a role: Only 1-in-10 adults in San Diego are believed to have received a pertussis booster shot, for example. Nobody is calling the other 90 percent dangerous "anti-vaxers," even if they may have helped create an outbreak that killed several children.

Why So Much Autism?
There is clearly no single cause of autism, and we are not going to find answers looking only at genes, or for that matter, only at thimerosal or MMR. But there remain many reasons why some parents, doctors, scientists and people with autism say a vaccine connection cannot be ruled out, at least in some cases.
My motive has never been to "blame vaccines." I have no personal reason whatsoever to oppose them, and little to gain -- believe me. What I have been trying to do is find out why so many more kids today are so sick.
I do not belive that better diagnosis and wider awareness can explain away a tidal wave of suffering. Such dinosaur mentality never helped a single child, and most credible scientists are abandoning it.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," Dr. Irva Hertz-Picciotto, an epidemiology professor at the University of California, Davis MIND Institute, has said. Those culprits, she said, might lie "in the microbial world and in the chemical world."
Another good example is Francis S. Collins, M.D., Ph.D, current Director of the NIH. "Recent increases in chronic diseases (like) autism cannot be due to major shifts in the human gene pool. They must be due to changes in the environment" and other factors, he told Congress in 2006. Collins called for more research into "environmental toxins, dietary intake and physical activity," in order to "determine an individual's biological response to those influences."
Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee, concurred with his boss, Dr. Collins, when he told me, "There is no question that there has got to be an environmental component here," because "this is not something that can be explained away by methodology, by diagnosis."
In my opinion, many children with autism are toxic. Some thing or things happened to make them sick. Unfortunately, our world has become a hazardous juggernaut through which increasingly fewer infants seem to emerge unscathed. We need to identify what is blocking their way, and fix it.
I know that many people will say the vaccine issue has been thoroughly investigated and debunked. I honestly wish that were the case, but it simply is not true. All of the "vaccine-autism" studies you hear about investigated just one childhood vaccine out of 14 (MMR), or one vaccine ingredient out of dozens (thimerosal). That is like announcing that air pollution does not cause lung cancer because you looked at carbon monoxide, alone, and hydrogen sulfide, alone, and found no link.
Moreover, many of the large epidemiological studies that purport to show no association between MMR or thimerosal and autism were conducted by people with vested interests -- financial or professional -- in defending vaccines and vaccine programs. Much worse than that, the vast majority of these studies were marked by methodological flaws that limit their usefulness and legitimacy. A thorough point-by-point rebuttal of the epidemiology will soon be published by the advocacy group SafeMinds.
What we do know is that reported autism rates began to explode right around the 1987-88 birth cohorts in the United States and a few other western countries, according to an EPA study.
"The greatest increase in ASD prevalence occurred in cohorts born between 1987 and 1992 across the United States," the EPA study concluded. Rates did not begin to increase in developing countries until a number of years later.
U.S. special education data found the exact same thing: ASD among students nearly tripled between the 1988 cohort (5-per-10,000) and the 1990 cohort (14.3-per-10,000) and then tripled again by the 1992 cohort (42.1-per-10,000). After that, the rate of increase slowed down significantly. Some of this increase is clearly due to an expansion of the ASD definition, but not all of it.

That should give scientists a lot to work with. If we believe the head of the NIH, then autism might be the result of "environmental toxins" interacting with individual genes. If we believe EPA scientists and Department of Education data, ASD rates boomed between the 1988 and 1992 birth cohorts, and increased at a much slower pace after that.
It seems reasonable to suspect, then, that average U.S. exposures to the environmental toxin(s) in question increased around 1988 (though they certainly were introduced before that) and continued to rise rapidly until at least 1992, when they began to level off. These exposures would have to have increased in developing countries several years later.
That seems like it would narrow the list down considerably. Because there is no one cause of autism, we need to look at all possible exposures and other environmental factors that might have increased dramatically during those years, including plastics, flame retardants, jet fuel, pesticides, viruses and retroviruses, parental age and, yes, the vaccine program.
For example, the HiB vaccine series was introduced in 1988, a fourth vaccine was added to the DTaP series around 1990, and the HepB series was introduced in 1991, with several years of increased uptake after that before it reached its current high levels. These vaccines have not been studied in direct relation to an ASD risk, except for one HepB paper that found an association (see below).
We also know that autism rates are different in different populations. The latest CDC figures available (from the 1998 birth cohort) show an overall U.S. rate of 91-per-10,000 children (1-in-110), and nearly 2 percent of all boys. Among U.S. military families, however, the rate is reportedly 25 percent higher, at 114-per-10,000 (1-in-88) and among Somali immigrants in Minnesota, it could be as high as 357-per-10,000).
Up in Canada, things are different altogether. In Alberta, the reported rate is, at the very most, 52-per-10,000, which is on par with the rest of Canada, except for Montreal, where the reported rate is 25 percent higher, at 65-per-10,000. The only exception is among Aboriginal (Native American) children in Alberta, whose reported rate was a very low 23-per-10,000. The rate among Aboriginal children in other Canadian provinces is also reportedly low.
Inadequate access to health care and diagnosis, a rural lifestyle and/or genetic differences might explain the apparent lower risk, the authors said, noting a somewhat similar trend among Aboriginal children in Australia, "and pointing to apparent differences in risk of ASD among Aboriginal people living in industrialized countries compared to the rest of the population."
Meanwhile, children of immigrant parents in Montreal seem to have a much higher ASD rate than average.
Exposure to environmental factors most likely not only increased between 1988 and 1992, it may have been most impactful among children of Somali immigrants, followed by U.S. children of military personnel, followed by other U.S. children, followed by children of immigrants to Canada, followed by non-Indian Canadian-born children and (possibly) followed by Aboriginal children in Canada.
Of course, these exposures would have to be studied in the context of genetic make-up, which might vary significantly among some of these populations and thus affect their response to environmental triggers. There are probably differences in the way children are diagnosed and documented in different regions, as well, due to cultutral and other factors.
On the other hand, if you look at vaccination rates, you find that Canadian Aboriginal children lag behind other Canadians by about 20 percent, and "suffered from higher rates of vaccine-preventable diseases," as a result, according to Health Canada.
Meanwhile, unlike U.S. children, most Canadian kids do not receive the three-dose Hepatitis B vaccine beginning at birth, except for children of immigrants, who are concentrated in large cities like Montreal. One paper in the Journal of Toxicology and Environmental Health suggested that boys who received the HepB vaccine beginning at birth were three times more likely to develop an ASD than boys who did not.
In the second half of this two-part series, I will look at some of the exciting new autism science that has been developed lately, especially around seizure disorders, mitochondrial dysfunction and the destruction of myelin -- the fatty acid coating that insulates and protects the brain and the rest of the central nervous system.
As I mentioned above, complex seizures, demyelinating disorders and mitochondrial "meltdowns" have all been implicated in autistic regression. All three can happen in nature without vaccines being involved. In fact, all three can be triggered by childhood illnesses that are prevented by vaccines.
In that sense, it's likely that some children have avoided autistic regression precisely because of their immunizations. On the other hand, if vaccines generally prevented ASD, rates would have gone way down since 1988, and not in the opposite direction.
A good example is ADEM, or acute disseminated encephalomyelitis, in which the brain's myelin sheath is severely damaged, usually only temporarily. The U.S. Vaccine Injury Compensation Program (VICP), better known as "Vaccine Court," has ruled that HepB, MMR and other vaccines can result in ADEM and other demyelinating disorders. In one case, Bailey Banks, the VICP found that MMR-induced ADEM resulted in Pervasive Developmental Disorder-Not Otherwise Specified, which is an ASD.
In another successful VICP case, the special master found that the MMR vaccine had contributed to ADEM, as well as GI distress. It was a ruling that eloquently described the paradox of vaccines that can cause the same disorders as the viral infections they were designed to prevent.
"What is striking to the court is that the most common cause of ADEM is the measles virus, and the vaccine at issue is a live (though attenuated) measles virus vaccine," the judge wrote. "That the virus is attenuated in the vaccine does not make it less likely than the natural or wild virus to be the cause of ADEM."
ADEM cases have fallen to one-third of their prior number because of measles vaccination, the ruling noted. But even the government's expert witness defending the MMR "admitted it is biologically plausible that measles vaccine causes ADEM."
Wild measles virus can cause ADEM in 1-in-1,000 children, a very powerful argument for immunization. On the other hand, a small fraction of children might be at risk for ADEM from the MMR vaccine itself, (the special master said the fact that the vaccine measels virus was attenuated made this no less likely, though I am unaware of any MMR-ADEM studies), and that particular vaccine injury might lead to an ASD.
In other cases, such as children with mitochondrial dysfunction, we may want to give some vaccines as early as possible in order to prevent the type of fever that can send these children into autistic regression (hardly the rant of a dangerous anti-vaxer). On the other hand, in one study, 12 out of 17 children with ASD and mitochondrial disease regressed after a fever greater than 101 degrees Fahrenheit. In 4 of those 12 cases (33 percent), the fever occurred after routine vaccination.
The answer in such cases may be to vaccinate earlier, but less intensively. Douglas C. Wallace, Ph.D, head of the Center of Mitochondrial and Epigenomic Medicine at Children's Hospital of Philadelphia, told the National Vaccine Advisory Committee that, when it comes to mitochondrial disorders, "We advocate spreading vaccines out as much as possible. Each time you vaccinate, you're creating a challenge for the system, and if a child has an impaired system, that could in fact trigger further clinical problems."

Finally, we are going to be hearing a good deal more about vaccines, seizure disorders, and autism as a "residual sequela" of the injury. Maybe vaccines can't cause autism, as the government says, but they can cause complex seizures.
And complex seizures, "during early postnatal development may alter synaptic plasticity and contribute to learning and behavioral disorders" in certain types of children, said one recent study. "Early life seizures may produce a variety of cellular and molecular changes in hippocampus that may contribute to the enhanced risk of IDDs and ASDs in patients with early life seizures and epilepsy."
That study did not link vaccine-induced complex seizures to residual sequelae. But the federal Vaccine Injury Compensation Program has many cases of normally developing children who developed seizure disorders and "encephalopathy" (brain disease) following vaccination.
"This pattern is seen frequently in vaccine cases. An otherwise healthy petitioner receives a vaccination, the vaccine causes a fever, which in turn causes or triggers a complex febrile seizure," one VICP special master wrote in ruling that the DTaP vaccine "was the legal cause of (the child's) seizure disorder and developmental delay."
Some children who suffer from vaccine-induced complex seizures go on to suffer from "developmental delay," "behavioral problems," "affective disorders," "mild mental retardation" and other residual sequelae, VICP records show. Some of them also develop an ASD, and some now get government funds to pay for things such as applied behavioral analysis (ABA), a treatment used mostly for ASD.
Either way, the difference between a child with a seizure disorder, encephalopathy, developmental delay and behavioral problems, and a child with autism spectrum disorder, is hardly vast. Given that vaccines can sometimes cause injuries that lead to the former, why is it so outrageous -- why is it so "anti-vaccine" -- to ask if they can lead to the latter?
As one special master wrote: "It is exceedingly reasonable to conclude that where the vaccine is associated with fever and seizure and the seizure is of a complex nature, in the absence of proof of an alternative cause, it is the vaccine that is responsible for a subsequent epilepsy and residual sequelae" (Italics added).
Developmental delays including ASD are residual sequelae of some vaccine-induced adverse events, the VICP has determined. What proportion of ASD cases resulted from a vaccine injury? We may never know.
The CDC estimates that there are about 760,000 Americans under 21 with an ASD. Even if just 1 percent of those cases was linked to vaccines (though I believe it is higher), that would mean 7,600 young Americans with a vaccine-associated ASD.
In that case, their parents would be neither anti-vaccine nor lunatic fringe. They would be right.
This is part one of a two-part series.

Angry, and a little sad

It is frusterating to have to deal with school physicals, and doctors who insist that catching KC up on his vaccines will be the right thing to do. Its what I should do...if I want to protect my son. Or so I am told.. But wait, I have let you guys help me "protect" my son before...and look where it got me! I can't take any more of that kind of help. We are full to the brim with problems as it is.

This may be right for some people, but not for me. Not for my son. I don't understand why people would want me to do something to my son if I know that something will negatively affect his development. The very development we so carefully nurture and mold each day. It seems a bit backwards to me, that someone wants to take that away. And then I am the crazy one for not wanting to do it! Sorry, we see things differently, but its my son at the end of your needle. Stay the fuck awaw.

I don't disrespect people who vaccinate. It might be the right thing for you and your child. But its not right for me and mine. And thats ok. For most of us that is. Its ok to disagree, and to think different things are right for different children. Often times they are. Just please don't think I am crazy. I am crazy only in the sense that I am crazy about KC.

The kind of crazy, in fact, that leads me to defend my position to want to keep him as safe as possible. Not too crazy though...I only love him more than any human being could love another human being. Thats it : )

How do YOU spell Autism?

 

How to spell Autism 

A

I have to say the first emotion I felt was Anger, I was angry that this
had happened to me, I had been so careful,
I made an appointment with my doctor, when I was barely a month along,
I took good care of myself, I ate well,
and didn't abuse my body with drugs or alcohol, or smoking.
I felt such rage at first, this was not fair,
some women neglected themselves, and didn't care for the child inside,
and their child was perfect. Why not mine?

U

Unbelief..... denial...........you name it, I felt it. This was not
happening to me, I would wake up in the night, and it would hit me, my
child has autism, and then I would plug my ears, trying to stop the
voices in my head, I would bury my head in the pillow, refusing to
believe this was happening to us. It took me a long time to let it sink
in, and to this day, I sometimes forget, and then the realization hits
me, and it knocks me to my knees again. It takes all my strength to get
up. But I do, because I have to, I have to be there for my child.

T

Of course the tears, tears of rage, panic, frustration. Gut wrenching
tears in the middle of the night, somehow it always seems worse in the
night. The house is quiet at last, and there is time to think, to
ponder, to pray. Tears though are such a relief, without their outlet, I
would have gone crazy. But, I have held them back so many times, in a
store when someone makes a cruel remark,
or a child who approaches mine, then backs off with that 'look' on his face.
I refuse to cry then, because I still have my pride, and it although it
is tattered, I cling to it like a security blanket.

I

Isolation, oh yes, the isolation. Friends seemed to disappear into thin
air, when they found out.
Sometimes I wanted to scream "It's not catching, " but they wouldn't hear
me, they were too busy keeping their child away from mine. The phone
stopped ringing too, and people would turn away at Church, avert their
eyes when my child had a tantrum. The isolation is the hardest
thing.......... being alone hurts. At the time in my life when I needed
friends and family the most, the pain of them looking the other way, was
indescribable. But I have found friends, people who know the path I
take, for it is their journey too. For this blessing I am so grateful.
These are the true friends, the ones who are there for me, when life is
unbearable.

S

Sadness and Solace, I have felt the sadness of knowing my child will not
be like other children, I have wept many tears for him. I have spent my
waking hours, and sleepless nights worrying about his future, who will
care for him, what kind of adult will he be? Will someone be there for
him, when I am gone? There is such pain in not knowing, there is nothing
so hard for a parent, than realizing that one day, you will not be there
to take care of your child. And knowing that this child will always need
your care. But there is Solace too, and I have felt this peace,
I have learned to accept this Autism, I cannot erase it,
nor will I embrace it. But I have come to a feeling of peace, and I go on.

M

Mercy and Magic, Have mercy on me, It's so hard to raise a child when
others look on, and instead of holding out a hand to help, they stand in
judgment. Don't judge me, when my child acts out, when he screams
because something has changed in his environment, he doesn't do it
purposefully, he is only reacting to his feelings. I am a good mother, I
love my child like you love yours, I want the best for him, yet I cannot
give in to him. He looks to me and I must teach him,
just as you teach your child. I may do it differently,
because my child is different. He learns in his own way,
and I have to teach him in a way that to others may seem odd, or unusual.

Magic? Oh yes, there is magic. I have seen my child blossom, I have
seen him learn, I have watched his wonder, and rejoiced in his small
steps. His smile is magic, and his heart is gold.
I did not choose this journey, but somehow it is mine, and I must see the
roses, as I walk upon the rocky pathway. I did not ask for this, but it
was given to me, and I must be strong enough to bear it. If I cannot,
then I am lost, if I give up, who will take my place?
There is enough joy, if I look for it....... it will find me. -Unknown

A Beautiful Tragedy at OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

The Caringbridge Update...

Below is the update that my Mom wrote for KC's caringbridge page.




We are gearing up to walk through the fire yet again with Mr. KC :(
He has been having some troubles for the last month or so and they continue to get worse in spite of Mommy's best efforts to slay the dragon that keeps bothering her boy.


Among the current issues are sleeplessness, extreme mood swings, biting, hitting and scratching himself and Mommy, stuttering, talking gibberish and then getting agitated that Mommy doesn't understand, lots of ear flapping and hitting himself in the head, irrational periods lasting from 5 to 30 minutes during which he needs to be restrained to keep him from hurting himself or the closest person to him, rigidness that is getting more consistent even to include a requirement that we enter in the same door we exited. Oh, and some seizing too! The list goes on but these are currently the major issues.


Poor KC and POOR Mommy! The fear surrounding what could be wrong this time and what uncovering what the problem is will entail, is overwhelming to us all. Frustration abounds, tears are flowing, and worrying is constant. 


Please pray that the wonderful doctors at the U of C will swiftly find out what the problem is and how to best solve it so our little boy can enjoy his life more consistently again. 

Do You Know Jenny?

By Kent Heckenlively, Esq.

If you had a problem with alcohol in the late 1960s or 1970s you might be quietly approached by someone who said they were "a friend of Bill W." Bill Wilson was the co-founder of Alcoholics Anonymous and those who had been through his program identified themselves as “a friend of Bill W.”

To be a friend of Bill W. meant you understood certain principles, such as asking forgiveness of the people you’d harmed, and turning your life over to a higher power. One of my good friends became a “friend of Bill W.” before I met him and remains one of the finest people I know. He sometimes talks about how much AA means to him and how he has gone onto sponsor other people to become "a friend of Bill W.” But not a lot. Being "a friend of Bill W.” also means being humble, regardless of the number of people you may have helped.

The other day I joined a gym. I haven’t belonged to a gym for years, but for me it’s the best way to exercise. I know others can be diligent and throw their jogging shoes on and run out the door, but that just isn’t me. I need a gym.

And since it had been more than a decade since I’d lifted a weight I paid for a couple sessions with a trainer. The beefy trainer in his early twenties seemed as if he lived a life light years away from my concerns. In the midst of setting up a work-out routine he asked me about my hobbies, and I mentioned that I wrote for a web-newspaper on autism because I have a daughter with the disorder.

“Do you know Jenny McCarthy?” he quickly asked.

I told him I hadn’t actually had the pleasure of meeting her, but she also occasionally wrote for Age of Autism, in addition to her books and television appearances. Then I asked how he knew about her.

He went onto explain he had several cousins with autism and their parents were avid followers of Jenny. And it struck me then that Jenny McCarthy has become our common touchstone, just as Bill W. was to a generation of people struggling with addiction problems. Like alcoholics struggling to recover in the 1960s and 1970s we're still something of an underground movement, but Jenny is our code word.

I didn’t have to explain about the role of vaccines in autism, the raging debates, the “gene” studies which reveal less the more you examine them, and how we believe medical authorities are concealing vast amounts of information like the Vaccine Safety Database. My trainer knew. He knew Jenny.

And maybe that's been Jenny’s greatest contribution. You need only become familiar with her writings and public appearances to be in on the conversation. She has done so much of the education for us. We just need to continue that conversation.

When I go back I'm sure I'll have more conversations with my trainer about his cousins with autism and ways to possibly help them. I'd been looking for something of a break in going to the gym, but it doesn't seem like that's my destiny. The demands of the epidemic intrude even as I'm struggling to fit into a pair of size 34 jeans. And in the helping tradition of Bill W. it's the only response I could give.

In the future maybe the question won’t be “Do you know Jenny McCarthy?”, but are you "a friend of Jenny?”

Is there blood on your hands?

Sorry I haven't posted in a while.

I don't know why....

No energy for the fight maybe? That's a cop-out and I know it, but it is what it is. I lost it somewhere between therapy sessions, and follow up EEG's, and trips to Detroit, and meetings with specialists.

I'm struggling to get it back...because I need it.

I have six months worth of excitement, progress, fear and heartache inside, all bottled up. So I'm workin on it. I updated some things, such as my profile. It's a start anyway.

In the mean time, check out this post from a fellow blogger...

either copy and paste below OR just click on my title "Is there blood on your hands?"

http://crystaldavidsonengler.blogspot.com/2009/08/1-in-100-when-will-you-listen.html

Love the message...and the graphics!

For now...

Karen

Autism research blocked...

PRESS​ RELEA​SE
Janua​ry 16, 2009






Feder​al Membe​rs Of Advis​ory Commi​ttee Block​ Vacci​ne-​Autis​m Resea​rch,​ Defy Wishe​s Of Its Own Scien​tists​,​ Autis​m Commu​nity,​ and Congr​ess
SafeM​inds Withd​raws Suppo​rt for Autis​m Resea​rch Strat​egic Plan,​ Asks Dasch​le to Inves​tigat​e.​
JANUA​RY 16, 2009 - In a highl​y unusu​al depar​ture from proce​dure,​ gover​nment​ repre​senta​tives​ to the Feder​al Inter​agenc​y Autis​m Advis​ory Commi​ttee (​IACC)​ voted​ this week again​st condu​cting​ studi​es on vacci​ne-​autis​m resea​rch despi​te appro​val of the same studi​es at their​ prior​ meeti​ng.​ The resea​rch was suppo​rted by numer​ous autis​m organ​izati​ons and reque​sted by IACC'​s scien​tific​ work group​s and Congr​ess.​ The maneu​ver to re-​vote on the vacci​ne-​autis​m studi​es was initi​ated by the IACC'​s repre​senta​tive from the CDC and pushe​d throu​gh by the IACC Chair​,​ Dr. Tom Insel​,​ Direc​tor of the Natio​nal Insti​tute of Menta​l Healt​h of NIH.

Unlik​e most Feder​al advis​ory commi​ttees​,​ the IACC is domin​ated by gover​nment​ repre​senta​tives​ occup​ying 12 of the 18 seats​.​ Of the 6 publi​c membe​rs,​ 5 voted​ to retai​n the vacci​ne resea​rch at the meeti​ng.​ The lone disse​nting​ publi​c membe​r resig​ned from her organ​izati​on,​ Autis​m Speak​s,​ the night​ befor​e the meeti​ng.​ Autis​m Speak​s has issue​d a state​ment objec​ting to her vote.​

The CDC, part of HHS along​ with NIH, has been criti​cized​ by paren​ts citin​g failu​re to uphol​d vacci​ne safet​y.​ In a surpr​ising​ momen​t of cando​r,​ Dr. Insel​ cited​ HHS confl​icts of inter​ests on vacci​ne-​autis​m resea​rch due to the over 5,​000 autis​m lawsu​its pendi​ng again​st HHS. His comme​nt suppo​rts the autis​m commu​nity'​s conte​ntion​ that those​ in charg​e of promo​ting vacci​ne use while​ assur​ing safet​y are funda​menta​lly confl​icted​ and shoul​d not inves​tigat​e thems​elves​.​

IACC Membe​r and SafeM​inds Vice-​Presi​dent Lyn Redwo​od state​d,​ "​Revis​iting​ objec​tives​ alrea​dy appro​ved did not appea​r on the meeti​ng'​s agend​a.​"​ She added​,​ "​Advoc​acy group​s and legis​lator​s have been margi​naliz​ed in this proce​ss.​"

Senat​ors Enzi,​ Dodd,​ Kenne​dy and Santo​rum,​ as well as Repre​senta​tives​ Barto​n and Smith​ made state​ments​ which​ are part of the Comba​ting Autis​m Act of 2006 legis​lativ​e histo​ry that resea​rch on vacci​nes and their​ compo​nents​ and autis​m shoul​d be imple​mente​d by the IACC.​

Due to the IACC'​s actio​ns,​ SafeM​inds has withd​rawn its suppo​rt of the IACC Strat​egic Plan for Autis​m Resea​rch and reque​sts that incom​ing HHS Secre​tary Dasch​le inves​tigat​e the IACC'​s actio​n and recon​stitu​te the commi​ttee,​ inclu​ding remov​al of NIMH as its lead agenc​y.​

SafeM​inds is a priva​te nonpr​ofit organ​izati​on that inves​tigat​es and raise​s aware​ness of the risks​ to child​ren of expos​ure to mercu​ry from the envir​onmen​t and medic​al produ​cts,​ inclu​ding thime​rosal​ in vacci​nes.​

I will dream new dreams...

My brother once told me that it's never as bad as it seems and it's never as good as it seems. Tonight that is ringing true for me.

It's funny how I had it in my mind how the EI evaluation was going to go. I pictured one of two scenarios. Either they would tell me I was crazy, and he was fine, or they would recommend speech therapy and tell us to watch some of his behaviors closly.

Not quite. My Mom and I came out of the meeting with five new specialists to see, new equipment, tests, and and heavy hearts.

They asked all of the autism questions. They could see the obvious, which is that he is social and makes eye contact, etc. But.. Does he love to stack blocks and line up his toys? Yes. Does he understand dangerous situations such as a hot stove? No. Does he interact with other children? Well, he parallel plays and imitates. So not exactly. Does he initiate and maintain conversation? Um, well, nope.

Occupational Therapy 1xper week. Need to start using social stories. See a developmental pediatrician and a behavior specialist. Sensory issues for sure. Seeks stimulation, lack of body awareness. Lack of sensation. Recommended weighted compression vest. Can't control his meltdowns appropriately.


Speech he was within the normal limits in terms of how many words, but his pronunciation is off so we will get speech therapy 1x per month and need to get a hearing test asap. Not developmentally ready to begin working on the pronunciation problems.

Physical therapy 1xper month. Low muscle tone, weakness and instability in trunk. Immature sitting positions. Ankles turning inward, instable gait. Need to get fitted for DAFOs.

So, we have our orders. All of the above, along with referrals to see the developmental pediatrician, behavior specialist, ENT specialist, allergist, and pediatric dietitian. Let the fun begin.

I sound bitter...I know I do. I want so badly to be brave and strong. Yesterday I was sharing the good news...no autism diagnosis yet...additional therapy that I didn't expect...lots of avenues to try...Yesterday I was brave, but today my heart hurts. Today it's had time to sink in. I was researching proprioceptive dysfunction, which I found out KC has, and one paragraph said "So your kid will probably never be an athlete but he can learn to function." It seems so trivial, but I almost thought he'd get off scott free without having any doors shut to him before he got to decide for himself. I know it could be so much worse. I feel so conflicted, and guilty for mourning these losses when others who I know and admire are bravely weathering larger losses every day with their children. I suppose thinking about how much worse it could be is a bit like playing the "what if" game. I can't live in terms of "what ifs". "What is" is that every Mom dreams of having a healthy baby who doesn't have to struggle each step of the way. That dream was my reality when KC was born, then he got sick and it was gone, then he got better and the dream was reality again, and ever since it's been slowly, piece by piece, being taken away from me. I don't know how to come to terms with it because I don't know what the future will hold for him. "What is" is that yesterday KC's service coordinator asked me to sign a form releasing KC's records to the school district so that in a year when KC turns three he can be placed in a special ed program in preschool. "What is" is that I thought I knew pain and joy before I had KC, and it didn't even scratch the surface.

Mothers live wrapped up in the illusion that we can protect our children. I can no sooner protect my son from this then I could move the sun and the stars, but I can love him. I will remember that having courage often means letting go. I will be brave. I will let go of my illusions and I will dream new dreams. I will love my son to the ends of the earth and back and he will be always be perfect in my eyes. Always.

It only takes two words...

to melt my already soft heart. After another gut wrenching evening of KC crying, I opened the yogurt he requested. I stuck the spoon in and he freaked. I realized he wanted to feed himself. I handed him the spoon, and he started shoveling it in. The sobs subsided. I looked at him and smiled. I didn't expect him to respond at all, but his eyes met mine and he smiled back. With barely more than a whisper I heard him say, Hi Mama. Tears filled my eyes. I got a glimpse of my son at that moment. He's in there, he just needs me to find him.
KC, keep smiling baby. I know it's hard, but when you can smile, I'll be here to smile back. I love every second of it. You are beautiful inside and out.

I lost the key...

This weekend, that sweet smile was noticeably absent from my son's face. The sound of laughter from a happy two year old was non existent. After several weeks of improvement on the GFCF diet, KC is worse than ever. My heart hurts for him. I don't even know what to do. When he flips his lid and throws food all over, the Mommy in me knows I have to teach him not to. I use time out usually, but at times like this it seems that he can't even control himself, so I feel horrible punishing him. I just can't let him think it's ok to do that. Chocolate pudding all over me, Gran, KC and the carpet is not ok. He asked for the pudding, then freaked when we opened the lid and put the spoon in. He ran off crying and my Mom and I were trying to figure out what the problem was and he ran back and before we knew it he had his hand in the pudding, grabbing out fistfuls and throwing it! A few times after, he asked for pudding and freaked out again when I offered it to him. I realized hours later that last time KC had pudding it was runny so I put it in a cup for him to drink. My only though is that it wasn't the same as last time. We also had throwing incidents with soy mac and cheese, and spaghetti squash also. With equally baffling reasons (to me). At one point he picked up a book and bashed the dog over the head, completely unprovoked. He's never done that. He cried so much this weekend, that my Mom and I were reduced to walking the floors with him, as he sobbed, many times. Some other odd things that happened before have started again also, such as picking at his eyes. He grabs the eyelash and pulls. He takes a pancake (or other food item), eats half of it, and then hides the rest and asks for more. He eats way more than usual. This stuff doesn't seem remarkable for a two year old, but these things all happen at the same time, and not independently. We took him to an open house at the fire station today. He wasn't afraid of the smoke simulator. He wasn't afraid of the fire trucks. But the plastic ducks in the pool freaked him out. KC LOVES DUCKS!!! I just don't get it. He just isn't the same kid. I'm going to call early intervention tomorrow and see what the heck is taking so long for the eval. I'm going to schedule the EEG that I've been putting off. He did have a few seizures today, although I only think that is part of the problem. I'm so scared. Something is wrong with him. He seems to be loosing his mind and I don't know how to help him. I'm his Mom. I'm supposed to know what to do. I'm not supposed to loose the key...

Reflecting....

I have been reflecting a lot lately. I was reading through some of my old myspace blogs today and decided to post a few. In some ways KC and I have come so far, and in some ways, my fears are coming true, but it could be so much worse...it could always be worse.

This is not the life I ordered.....
Ok, so I should be happy with what I have. I am lucky. My son is beatuiful, my mom is awesome, I have a good job and good friends. I am greatful...yet I am sad. My heart hurts for the struggles my baby has been through. I fear the future...the uncertainty of it all. But this I can deal with. "I wanted a perfect ending. Now I've learned the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and a making the best of it without knowing what's going to happen next. (Quote by-Gilda Radner)
I understand this. I embrace it in fact. I am facing a fate I cannot change, I am called upon to make the best of it by rising above myself and growing beyond my myself. I am learning to be stong in the face of horror, I remember to smile in between those bad moments. What I can't get over is the guilt. My mind knows that what happened to KC is not my fault. My mind knows that I an informed decision. However, my heart cannot accept the fact that I held my screaming baby down so the doctor could give him a vaccine shot that caused him to have a severe neurological disorder, consequently changing the course of his entire life. He cried the whole way home, woulden't even look at me. I consoled myself with the knowledge that what I did might save him from some horrible disease, instead it gave him one. How am I supposed to live with that? I watch him struggle with the medicine, constant tests, and yet he endures like a soldier My eight month is a soldier : (
Getting back to the fact that I am lucky....so far KC is developing normally. Most kids with IS don't.
I find myself asking why did this happen to my kid? Why me? When in fact I should be asking myself, how did I get so blessed, that my son is still "normal"? (I hate that word, but for lack of a better one...)
Yet a part of me still wants to focus on the "what if's". What if he developes Autism? (This is common in kids with IS)(Update-it is likely that KC is on the spectrum) What if the seizures don't ever go away? There is still so much damage to be done....What if just one of the many possible future problems occurs, what will his life be like then? Then I find myself back to the one, ever present question. What if I would have known not to get that vaccine?
As I sit here and write, tears spring to my eyes, and I know I need to move on and accept it, and forgive myself. I need to be brave. I need to realize that having courage often means letting go....
I love my son. I would cut my own heart out if it would save him one ounce of pain. I cannot do that. So I will make a promise to myself. I will process this pain, and I will release it. I will accept that fact that I made a decision I regret, and I will make the next best choice. I will endure. I will move on. I will forgive myself, and let this pain go, for myself as much as for him. I will.

My controversial thoughts on mass immunization...

I'm sure you all have heard in the news, the speculation regarding the MMR shot causing Autism. The media has opened a big can of worms regarding all vaccines. Some of you may wonder if you should vaccinate your kids, others know that they will vaccinate either way. If you research this, you will find very strong opinions on both sides of the fence. I stand somewhere in the middle. Here are my thoughts:

The fact that the CDC states that there is no proof that MMR causes autism is directly related to the fact that they won't spend any money researching it!

I believe that vaccinations are a vital part of a healthy society, but the CDC's "one size fits all" methods are in serious need of work.

The CDC states that the thermosal has been removed from all vaccines (not true, some do still contain mercury) therefore this proves that they are safe. All this proves to me is that the thermosal is not the only toxin causing the problem in question!

The CDC does acknowledge that the pertussis vaccine used to cause infantile spasms, but claims that when they changed to the A Cellular, the problem was solved. My response to this is LOOK AT MY BABY. Look at HIM. Within 9 days of having this shot he was having hundreds of seizures a day. He hasn't been right since. Too many other parents tell this same story, but since no one will do the research, it can't be "proven"

The CDC claims that it is best for all children to have the same immunization schedule regardless of medical history, or specific circumstances, yet if there was ever a "one size does NOT fit all" situation, I think this is it. There is a lot of grey area when it comes to vaccinations and it is currently being brushed under the rug.

I will continue to vaccinate KC, but on a schedule that is best for KC. He will only receive certain ones,and they will be all seperated out (never 2 vaccines in one shot)
He will never receive another pertussis shot. (NOTE-I have decided not to vaccinate KC after lots of research and many hours of soul searching)

I can honeslty say that if I knew the risks of getting the pertussis shot, I still might have elected to get the shot for KC. But I didn't know. I made what I thought was an informed choice, but the truth is that I was missing vital information when I made that choice. I had a right to know that the pertussis shot has been known to cause infantile spasms, and the parents who's kids developed Autism from the MMR had a right to know that too. We need to be able to make a choice we can live with! If your perfectly healthy child, changed drasticaly after a vaccination shot, weather it be by siezing like KC, or verbally and socially regressing like the autistic kids after the MMR, you would not give a shit either about the CDC's protocal of mass immunization, or defense that it can't be proven (won't be proven). How am I supposed to accept that answer and care about the masses when I am too busy caring for my sick baby. He was once a happy, healthy little boy. Since his pertussis shot (3 months ago) he has had countless seizures, 5 hospitalizations(***Update-9 hospitalizations to date), been poked somewhere around 25 times attempting to start iv's, had somewhere in the ball park of 20 bloodtests, 9 weeks of daily steriod shots in his leg, been put under 3 times for testing, has 8 specialists, is on 3 different medications currently, along with a special amino acid based formula, and is going to be starting with the NG (feeding tube) as soon as the insurance crap gets worked out and we get the supplies for home. And he's still seizing. It's no wonder that he's fussy all of the time. He used to smile and laugh so much. Now I'm lucky if I hear him laugh once in a day.
There is a book, if you are interested that I think is great. It's listed below. It is not anti vaccine, rather a smart approach to vaccines.
I had a right to know. And more importantly, now I have a right to be acknowledged. My son was damaged by a vaccine, and his life will never be the same. Take some time and do some research. Trust me, you will wish you had.

Hello, my name is Autism.

"My Name is Autism"

By Omri Fiman/Marty Murphy





Hello. Allow me to introduce myself to you. My name is autism.

Perhaps you know me or know of me. I am a condition, a "disorder" that
affects many people. I strike at will, when and where I want. Unlike Downs Syndrome or other birth "defects", I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a child's life, while leaving him or her strikingly handsome. Many people may not even know I am there. They blame the child for what I cause him or her to do. I am autism and I do as I please.

I am autism. I strike boys and girls. infants and toddlers. I find my
best victims to be boys around the age of 2, but any child will do. I like
children and they are always the true victims, though I take hostage the
others in the child's family as well. It is a bit like getting 2 for the
price of one. I affect one child and "infect" the entire family.

I am autism. I strike rich and poor alike. The rich combat me with
education and therapy. The poor shut their children away and cannot afford to fight me. I am able to win in the lives of poor children more than I am those of the wealthy, but I will try to take root anywhere.

I am autism. I am an equal opportunity disorder. I strike whites,
blacks, Mexicans, Ukrainians, Russians, Poles, Slavs, Japanese, Koreans and Fins. In fact, I strike everywhere on Earth. I know no geographical bounds. I am autism. I do not discriminate based upon religion either. I strike Jews and Christians, Muslims and Buddhists, Atheists and Agnostics.

I do not care what religion a person is or what beliefs he may hold. When I strike, there will be little time for any of that anyway. When they find
me, they will question everything they believe in, so why would I strike
only one group? I have affected followers of every religion on the planet.
I am autism and I am strong and getting stronger every year, every
month, every day, every minute and every second. I am concerned that money might be allotted to combat me and my takeover of children, but so far, I have little to fear. Some countries like Kuwait, are spending quite a bit of money to assist those who I have targeted and some, like the United States, would rather spend money on such ludicrous things as discovering the number of American Indians who practice Voodoo, as opposed to combating me. In an atmosphere such as that, I can flourish and wreck havoc at will.

In places such as that, I rub my hands with glee at the problems I can
cause to children, their families and to the society at large.

I am autism. When I come, I come to stay. I take the dreams and hopes
of families and trample them with delight. I see the fear and confusion in
the eyes of my victims and the see the formation of wrinkles, the worries
and pain on the face of their parents. I see the embarrassment their child
causes because of me and the parents unsuccessful attempt to hide their
child, and me. I see tears the parents cry and feel the tears of their
child. I am autism. I leave sorrow in my wake.

I am autism. I taketh away and give nothing but bewilderment and
loathing in return. I take speech and learning. I take socialization and
understanding. I take away "common sense" and, if I am allowed to flourish, I take away all but their physical life.

What I leave behind, is almost worse than death. I am autism. I fear nothing except courage, which I thankfully see little of. I fear those who take a stand against me and attempt to fight me and bring others into the fight as well. I fear those who try to make it safe and easier for my victims in the community, and their families. I fear those who push ahead, despite the fact that I am in tow. I fear the day I will be eradicated from the planet. Yet, I do not fear too much right now. There is no need. I am autism and I bet you know me or know of me. If you don't, you probably will soon. I am marching forward faster than I ever have before. I am looking for new children all the time. I am looking for new children to consume and new lives to destroy. I dread the day I will be looked upon
with pity or worse yet, understanding, for that day, is the day I will
begin to die.

But in the mean time I am safe, free to prowl onward. Free to cause the pain and suffering that I do so well. I am on a mission and have much work to do and thankfully no one is stopping me yet.

Hello. Allow me to introduce myself. My name is autism. Perhaps you know of me, if not don't worry, you will meet me soon....

Believe in him with me....

It's Friday night and my son has just finished crying himself to sleep. I am still trying not to cry. Those of you who know KC's sleep habits know that he rarely cries himself to sleep, but things are different now. KC cries a lot. He screams when I drop him off at daycare. He cries when he wakes up in the morning. He cries himself to sleep, and he cries if I insist that he eat his yogurt somewhere other than the couch. He cries if I won't let him have more than three macaroni and cheese microwave dinners, because I am truly afraid that he is going to make himself sick by eating so much. And I cry because over the past month or so KC has changed in some significant ways that have led me (and others) to believe that KC is regressing into autism. Asberger's Syndrome, to be exact. I have always known that this was possible, even likely. Kids with seizures, especially IS have a much higher instance of autism than others. KC has been seizing almost daily lately. Kids with autism tend to have seizures more often so it kinda works both ways. KC has always had a few autistic tendencies, but in and of themselves they were not enough for a diagnosis, or even more than taking note. I always knew that there was something slightly different about him, but that could be said about many people. I also knew that if this was going to happen, it would likely happen near his 2nd birthday, if it hadn't already. I was just so hopeful that with all of KC's good luck that he would be ok. I wanted so badly for him to just be ok. And he will be ok, just not the way I had hoped. He has a lot going for him. He is verbal, social, and can make emotional connections. He will never be severely autistic, but to say that it will be mild might be over simplifying things. Many argue that there is no such thing as mild autism. But there is high functioning autism, specifically asberger's which is what I believe KC has. KC is extremely intelligent. He can count to 5, he knows the letter E, he knows a circle when he sees one, he can recite a few of his favorite books my memory, he remembers the tune to songs and can sing the tune. But he can't eat with a fork. He has days that he can barely walk with out falling. Lately he can't seem to stop tilting his head, and walking on his tippy toes. He is terrified of crib toys that move. He is my sweet, perfect, beautiful angle baby and right now I have that terrified feeling of wanting to scoop him into my arms and run far away from this. Of course I cannot do that, so I will once again gather the pieces of myself and do what I have to do to save my baby. I have begun researching the cassien free gluten free diet that seems to work wonders on some autistic kids. If all goes as planned, I'll start transitioning him right away. I'm going to research some things I can do at home regarding his behavior, and if need be I'll get early intervention in again. I don't even have to have him go through the official diagnosis process since he qualifies for services based on the IS. Of course he will have to eventually go through the official process, but it doesn't have to happen this second. I may take him in for an EEG, just because he seems to be seizing more and more. I'm going to research DAN doctors (defeat autism now) and see what I need to do to learn about chelation therapy and ABA therapy. And I'm going to try to keep myself together even though I feel like my world is falling apart again. Please pray for my baby. He's such a good boy, so sweet and so loving. I believe in my heart that his spirit will break through anything that he comes up against...I really do believe that. Believe in him with me, and believe that once again KC will defy the odds and will rise above whatever comes his way.