Wednesday, March 5, 2008

I usually don't blog much about Autism, BUT...

if there is a chance this blog entry can help even one person, it will be worth it. My story is identical to thousands of others (just attend an autism conference anywhere in the world...same story, different location.)

Chances are you now know someone with autism. At the very least, you know me, and I have two children with autism. When I was a teacher I had one student with autism. I recall thinking, "Wow. This is the one kid I will meet in my lifetime with autism." Why? Because the odds back then were 1 in 10,000. That little boy was phenomenal. Think "Rain Man" with a GREAT sense of humor. The 1 in 10,000 is now termed the "classical" form of autism (children with fragile X chromosome). The epidemic I will write about in this post is mainly referring to the vast growing number of ASD kids. The CDC has the number at 1 in 150. Here in the DC area it is more like 1 in 64. (1 in 100 boys and 1 in 400 girls. It affects both identical twins, but usually only one fraternal twin.)

My fraternal twin daughters were unofficially diagnosed with autism at 27 months, then given the label at age 3. My girls were developing quite well despite the fact that they were born at 35 weeks gestation. At the 12 month well-check where they received FOUR vaccines in one day, including the MMR, and the pediatrician said,"These girls are amazing." They entertained the nurses with their waving, clapping, vocabulary, and ability to point to identify/follow directions. I recall he checked off nearly every question he asked regarding their development.

It was within a 2 week period following that appointment I watched Julia slowly slip into her "fog". The loss of skills is so gradual, but by 14 months I was VERY concerned; she had no speech left. The pediatrician assured me she was fine, and probably focussing on gross motor skills. At the 18 month appointment the girls received 4 more shots (including Varicella). Kathryn amazed the pediatrician with her vocabulary and her ability to identify colors verbally as well as A,B,C, and 1,2,3. Then I watched Kathryn follow the exact same pattern of regression. By 20 months both girls had lost all speech. I called and spoke with the pediatrician at 20 months, 22 months, and at the 24 month appointment. He only checked two of the developmental milestones boxes. Yet he still remained unconcerned. This man is the autism guru for the state of NC (where we lived at the time) and he NEVER mentioned "autism" to me.

We moved to northern Virginia when the girls were 24 months old. I immediately took them to a pediatrician who also was unconcerned, "they seem fine to me," but at least recomended 3 developmental pediatricians I could see and tested for fragile X (negative...two perfectly healthy girls). By the time she was able to see us, the girls were 27 months old and she was very sure it was autism, but preferred not to give an official diagnosis before age 3. By 27 months they girls had lost even more skills, including no longer able to feed themselves with a spoon. Julia could still point and identify letters (upper and lower case) but lost these skills by 30 months of age. My heart was broken. I had infants that could walk. Fortunately at this time Kathryn slowly started using words again.

This was the hardest year or two of my life. The biggest obstacle for me was the stares from other parents in public when one or both girls went into autistic meltdown. The stare that says, "Can't you control your child?"

By age 4, Kathryn's vocabulary was above her peers, but lacked pragmatics (back-and-forth conversation) and Julia would say a word, rarely and never consistently. My girls are now 5 1/2 years old. Julia is starting to use words and short phrases a little more often (I type this with fingers crossed and holding my breath).

I am blessed to have the BEST husband EVER, who is also the best father EVER. You may think yours is, but only one of is is right and it is probably me. LOL! We are so proud of these amazing girls. I can only imagine how difficult it must be for Julia & Kathryn to know exactly what they want to say, and yet they are unable to articulate it. Our girls have magnetic personalities. Other girls tend to love Julia and boys tend to love Kathryn. There are a group of typical 1st grade girls that love to play with Julia at recess and Julia is the leader! Can you imagine a basically non-verbal child who is popular with NT (neurotypical) children? Kathryn's typically developing peers in her class love to pay attention to her because they love that she thinks differently from them. The tolerance typically developing children have for our girls is heart warming. No, they are not like "Rain Man". They are snuggly, love to give hugs and kisses, and are fun, fun, fun!

Now, one thing I have to get off my chest...the media will have you believe that thimerosal (mercury) is no longer in vaccines. Unfortunately this is not true. I know in the DC area parents have to order the vaccines themselves (Hopewell Pharmacy, if you are interested) because our area peditricians do not carry vaccines that do not contain neurotoxins. (This was also true when I lived in NC, and I have friends in Atlanta , Georgia have found to be true as well.) You see, it's not just about mercury, but other preservatives used AND the climbing number of vaccines on the vaccine schedule increases, and the autism rates increase accordingly. The shots have a shelf life of 6 years with thimerosal, but just 6 months without. This saves drug companies lots of money. I have been told by nurses that "we are not allowed at our practice to order mercury-free vaccines." Scary, huh? But I digress...There is a lot of pressure to receive flu vaccines (which is LOADED in thimerosal). You probably know that the flu vaccine is scientists "best guess" each season against the 3 most probable flus. Not exactly scientific, and I will trade getting the flu versus dementia, thank you very much. The population the flu vaccine is geared to help is the elderly, but the CDC statistics do not substantiate any significant help to this age group. Lastly, the media reports that recent studies indicate autism is NOT caused by vaccines. I urge you to get a copy of the studies. See who funded the study and who the parent company is of those who funded them...you will find a drug company in there somewhere. There are at least 17 different studies that DO show a causal link.

Most vaccines have components like: formaldehyde, aluminum, and mercury
which are called adjuvants, or helpers.(PDR, 2001) Formaldehyde is a carcinogenic liquid, used for embalming. Mercury is added in the form of thimerosal, a preservative known to cause nerve damage, autoimmune disorders and cancer. Aluminum is a proven neurotoxin, positively associated with Alzheimer's and several other neurological disorders.

So I do believe that over-vaccinating led to their regression (we are the last civilized country to still vaccinate for HepB...my girls were vacinated at 12 hours old, even though I tested HepB negative and the girls are not intravenus drug users or sexually active at the ripe old age of 12 hours.) Not to mention there are cases of typical teenagers getting vaccinated that slowly follow a similar regression just like my girls.

I find it insulting when the thousands of parents just like me are dismissed with comments like, "Autism is not on the rise..."
..."the definition has been expanded."
..."we are better at diagnosing it now."
..."you just didn't know what to look for."
C'mon, people! Yes, autism has been misdiagnosed as mental retardation and schzophrenia. But then those numbers would be decreasing, wouldn't they? Not to mention the number of people (men, in particular) that would be institutionalized if this has always been the case. So, why isn't EVERY vaccinated child subsequently diagnosed with autism? The commonalities in family histories seem to be autoimmune issues e.g. food sensitivities, asthma, diabetes, etc. My husband has family members with food sensitivities and other autoimmune disorders and my mother and cousin have autoimmune disorders.

****Update**** Yes, there are a few children that are not vaccinated and still develop autism, but most of those cases are explained by exposure to environmental insults (i.e. live on a farm that uses pesticides, live within a mile of an airport (mercury in exhaust), or live near an old mine or volcano (mercuric ash in the air, etc.) Yes, there are a few children that never regressed like mine, but were slow to meet milestones from birth. Research into family histories shows other commonalities like the mother having amalgams, rho-gam shots (I have both), HepB given at birth, or other environmental factors as I have listed above. Lastly, my intent is not to persuade you to never vaccinate, nor condemn you if you do not vaccinate. I just hope to help other parents make an informed decision. If you choose to vaccinate, I hope you will consider shots without neurotoxins AND spread out the timing of the vaccines. 3 or 4 in one day is a huge insult to our immune system. In the spirit of concern someone might say, “they might get measles and die.” I get this same fear tactic from our pediatrician about measles DESPITE the fact that the girls’ titres showed they are still immune, so I refused the booster vaccine at the 4 and 5 year well-check visits. We will continue to have their titres checked regularly and should they no longer be immune to something, we will make a decision at that time whether or not to vaccinate. We were subsequently kicked out of that practice because “we might make other children sick.” How can we make them sick if we are immune AND the other children are receiving the vaccines? According to the CDC, before the measles vaccine was put into practice, you had a more than 1 in a million chance of getting measles and dying from it. Statistically speaking, the vaccine has done little to improve those odds, because some children die as a result of the vaccine if the virus attacks an organ in the body. My high school friend's son went into a coma the day after the measles vaccine was given. He was “lucky” because he is the only known survivor of this condition because the virus did not go to an organ and kill him, but went to his brain instead. He will never be able to care for himself. They have a specially equipped van. He is fed via a feeding tube.

So, something I prayed I would see, but did not believe it would happen so soon:





MEDIA ADVISORY
LANDMARK FEDERAL COURT CONCESSIONCHILD DEVELOPED AUTISMFROM VACCINES
CHILD JOINS PARENTS IN PRESS CONFERENCE ABOUT THIS HISTORIC RESULT TOMORROW AT THE ATLANTA FEDERAL COURTHOUSE
PRESS CONFERENCE TOMORROW
THURSDAY, MARCH 6, 2008
11:30 AM
U.S. FEDERAL COURTHOUSE STEPS
75 SPRING STREET
ATLANTA, GEORGIA
A couple from Atlanta, Georgia will join with their 9-year-old daughter in a press conference discussing their daughter's development of autism from vaccines.
This landmark court case alleged that autism was caused by childhood vaccines and was scheduled to be heard as a test case before the concession was made.
The Centers for Disease Control have estimated that 1 in 150 children have autism, and many have linked the autism epidemic in this country to the mercury based preservative used in childhood vaccines.
Members of the media may contact Todd Scott at 212-564-4692 or 516-312-6573 for information.NOTE: "Evidence of Harm" author and journalist David Kirby is available for comment on this breaking news: He can be reached at 718-230-4250 – http://rs6.net/tn.jsp?e=001Yi1kqY6IdPxGOUNcuxtCZvPsUConvk9E15AKxSwTbt62Zcwp4tTmSrIGfoo_C3kQGuJyTLCHBvfE9be8v2ZWKVUraAO0N538lJZXxyQDpdk6MA8ZmWmSSw==.

AND: (From www. autismlink.com)

US to award vaccine damage payment
By Judith Duffy, Health Correspondent
Campaigners hail decision as ‘unprecedented’http://www.sundayherald.com/news/heraldnews/display.var.2086683.0.us_to_award_vaccine_damage_payment.php
A DECISION by the US government to award compensation under its vaccine damage programme to a child diagnosed with symptoms of autism has been hailed as "unprecedented" by campaigners.
The claim is one of nearly 5000 cases currently pending in the American vaccine "court", which allege that mercury-containing vaccines resulted in autism.
Washington-based attorney Jim Moody, one of the lawyers involved in the cases, told the Sunday Herald the case was scheduled to go to trial in May, but "to everyone's surprise" the government conceded liability.
"It is also significant they conceded it was causing autism, they could have just said vaccines caused injury or been vague," he said. "Never before has our government linked vaccines to autism."
According to court papers, the girl was developing normally during the first 18 months of her life. But the officials agreed to pay compensation after it was demonstrated that five vaccinations she received on one day significantly aggravated an underlying type of genetic disorder, leading to a condition which had "features" of autism.
A press conference is planned for Atlanta tomorrow, where the girl's parents are expected to talk about the case.
While the US health department continues to insist there is no evidence that vaccines cause autism, it has been seized upon as a major concession by campaigners on both sides of the Atlantic who believe there is a link.
Wendy Fournier, of the National Autism Association in America, claimed it echoed the stories of thousands of children across the country.
"With almost 5000 similar cases pending in vaccine court, we are confident that this is just the first of many that will confirm what we have believed for so long - vaccines can and do cause children to regress into autism," she said.
Bill Welsh, president of the Edinburgh-based Autism Treatment Trust, said: "Over many years the compelling evidence of parents in this regard has been ignored by a medical hierarchy who appear more concerned with vested interests than the health of children."
The girl received five vaccinations for nine diseases on one day in July 2000 - including for chickenpox, polio, diphtheria, tetanus and the MMR jab for mumps, measles and rubella. The decision by the Division of Vaccine Injury Compensation did not pinpoint specific issues with the vaccinations but concluded they "significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism disorder."

The family will be on Larry King tomorrow night :http://www.ageofautism.com/2008/03/larry-king-to-1.html

8 comments:

Mary in MN said...

Does vaccination cause autism? Possibly. But, is it the only cause? No!

My oldest grandson, who just turned 18, will be graduating from high school this spring. He was diagnosed with autism just before his third birthday, and Asperger's Syndrome at eight. Baxter exhibited symptoms from infancy, prior to vaccination. He did not experience a deterioration in abilities as did your daughters. In fact, he had savant tendencies. (He taught himself to read at 2-1/2.)

I think this emphasis on the perceived connection between vaccines and autism does a great disservice to parents. Many may not vaccinate their children, leading to increases in childhood illnesses such as measles and whooping cough. And, if they choose to vaccinate and a child develops autism, they may blame themselves.

I wish you and your daughters well.

Jean said...
This comment has been removed by the author.
whiternoise said...

Great observations June! You know what you're talking about and I have experienced with my own children the connection with the vaccinations and autism, along with several other parents. I am behind you 100% and there are many of us who will not accept the false statements from the drug company shills (greedy lawyers,doctors,politicians and CEOs) This connection is not a disservice, some people are fooled and hide their heads in the sand, I wish them well it's still a battle. A battle where there are many parents who believe you are correct from their own observations with their autistic children. Please continue in your battle for the truth we are out there and behind you!
Another Parent who knows

Katherine O'malley said...

Hi: My name is Kiki, actually Katherine! I love children and I am posting for the first time today because I read a great entry on Junes blog http://simplyelegantpapercrafts.blogspot.com/


which was incredibly moving to me. Then, typically, a conment I read tried to bring down the post with some old misinformation. June stood her ground (way t go June! It can be hard to expose oneself on these entries!) and she has inspired me to back her up on what she said. June is young, extremely intelligent and educated, and clearly doesn't appear to wish to divide the autism factions into even worse and more argumentative sectors.




We MUST work together, we must! Vaccinations and the harm they have done are an essential place to begin, to begin the research and to help our beloved children. If you don't grasp that, then at the very least don't try to be sneakily agressive toward other people who do not feel the same people you do.




One cool thing June has here, if you feel the same way I do: a place to donate to help with autism research. This is invauable! We are all in this together. Let's remember to behave like that and show our love for our dear chidren by learning as much as we can, the way June has, and by helping by donating as muh as we can!




keep it up, June! love to you all!




Kiki OM

Corie said...

Thanks for all the info. I truly think that we all should be informed to be the best parents we can be.

Let me know if there is anything I can do to help!!

BIG hugs and smiles!!

Windy Hills said...

We are so proud of you, Doug, Kathryn, & Julia. No one could have expressed these feelings any better. The girls are very special people and will make a positive impact on all who they come in contact with.

God bless!
Love,
Mom & Dad

lauren said...

WOW! i think YOU should go on larry king, miss june! i was familiar with some but not all of your info...but i've never seen it ALL together and written so cogently! (and here i thought VISUAL was your strength?!)

i feel like the thimerosol issue is a national scandal! or rather, it OUGHT TO BE a scandal...but nobody knows about it!!!

ok, that is STARTING to change...but we managed to get to that 1 in 160 number without anyone making a big deal! (if this affected professional atheletes it'd be the lead story every night, now wouldn't it??!)

new parents are not told ANY of this!!! the one profile i saw on "60 minutes" a year or so ago told the whole story as if the parents were blaming the VACCINES THEMSELVES and not the preservatives! the word MERCURY was not mentioned *once*...except by me...in my living room...yelling at the telly! (this is why i am not usually allowed to watch "60 minutes" actually!)

you already KNOW i think you are fabulous in soooooo many ways, but this is yet another example! you never whine, you never complain, you love your beautiful & amazing daughters EXACTLY as they are...and yet...you are there to look out for other people's children too!

xoxolauren

Miss Robyn said...

Thank you so much for this information! I had no idea any of this was going on. I had always just believed the doctors knew best and would never do anything to endanger their patients. I was naive, I know. I don't think all doctors are bad, by the way, but how do we sort them out before damage is done? I have never had a child with autism, but I do have a daughter with asthma, which was severe when she was an infant. When she would struggle to breathe, it was absolutely terrifying. The idiot doctor that actually took over when our original pediatrician left looked me straight in the eye and told me she was fine. Didn't listen to her chest, didn't examine her at all. Just told me she was fine as she was turning colors and I could feel her struggling for air as I held her. They (she and her associate) kept insisting she had RSV each time she did this, which was over three times. You don't get RSV three times. I left the office and immediately took her to the emergency room. It took 3 breathing treatments, an oral suspension and a shot to get her breathing normally again. Had it not been very late at night by the time we left the ER, I would have probably ended up in jail after going back to that woman's office. We obviously NEVER took her there again. I am happy to say our pediatrician that we have now saved her.

Anyway, that is my drama, and I just wanted to share it. Thanks again for sharing your info. It is always better to be armed with info when it comes to our children.

God bless you and your family. Please keep speaking out!!!!!!