Zurama's Compositions
The Worse of Autism
by
Zurama on 08.02.09 - public
There are a lot of things that I hate about the level of Autism Mickie suffers from. The sleepless nights, the bathroom accidents, the huge messes, th...
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A Box to Protect the TV Set
by
Zurama on 08.02.09 - public
I wanted to share this, with parents who have autistic children, that tend to be destructive with electronics. I remember a few years ago having a con...
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At least Mccain Responded!!
by
Zurama on 10.29.08 - public
In May, Rebecca Estepp of San Diego, who has a vaccine-injured child with autism, contacted both presidential campaigns for clarification on their pos...
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In May, Rebecca Estepp of San Diego, who has a vaccine-injured child with autism, contacted both presidential campaigns for clarification on their positions with regard to vaccine-safety reform. She made a plea for two Executive Orders to be issued within the first one hundred days of entering office: the removal of all mercury from all vaccines, and a moratorium on the addition of new vaccines to the recommended list for children, until the current vaccine schedule can be proven safe.
On October 20th, Estepp received a detailed response from Douglas Holtz-Eakin, senior policy advisor to the McCain campaign, stating that if elected, McCain "will work with all agencies to take all necessary steps in an expedient manner to ensure safe vaccines for every American family." Further, McCain endorsed parental vaccination choice stating, "The key to health care reform is to restore control to the patients themselves."
(http://www.ageofautism.com/2008/10/mccain-senior-p.html)
In contrast, Senator Obama never responded to Estepp's requests for improved vaccine safety, responding to her only with regard to his position on autism. Estepp is disappointed: "I truly wanted responses from both parties, and while the concerns of vaccine safety and autism overlap, they are in fact separate issues. I didn't ask either candidate for his position on autism. I asked for vaccine safety improvements on behalf of all children."
Earlier this fall, New Jersey parent Claudine Liss attended an Obama fundraiser with the express intent to get answers similar to those sought by Estepp. Liss explains, "He looked right at me and said, 'I am not for selective vaccination. I believe it will bring back deadly diseases, like polio.'"
Estepp extends a final plea to Senator Obama to clarify his position: "This is a party-neutral issue, and many of our parents are waiting to make up their minds on whom to elect. Senator McCain believes parents have a choice in how they vaccinate their children. I sincerely hope that Senator Obama misspoke that night in New Jersey."
This is from the Autism Research Institute.
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Why I trust Sarah Palin
by
Zurama on 10.28.08 - public
I have found that when it comes to special needs, the only people who really care and understand what we go through as parents of these special childr...
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Disabled Students Humiliated
by
Zurama on 10.21.08 - public
" While the regular kids eat lunch, the disabled kids come out 5 minutes before lunch is over and proctors tell them certain areas to clean up trash. ...
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Your link on my blog
by
Zurama on 10.13.08 - public
Hi everyone:
I have been updating my blog lately. If anyone has a website or blog about autism and would like to be added to my links list, please...
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Mike Savage!!!!
by
Zurama on 07.25.08 - public
Do you want to know what I think?
Savages's comments will probably set us back and you know what, he got away with it, because we have no power.
...
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Great News!
by
Zurama on 07.16.08 - public
Mickie has started to try solid foods.
After being on the SCD diet for 8 months, he is finally showing some significant improvements with his feedi...
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Mickie's Fundraiser Page
by
Zurama on 07.05.08 - public
Mickie's Fundraiser Page to help fund his medical expenses is up and running. I have autism awareness pendant necklaces for sale and a li...
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Mickie's Fundraiser Page to help fund his medical expenses is up and running. I have autism awareness pendant necklaces for sale and a limited edition frog with the autism puzzle on his belly. I even have one design with a pink puzzle for those with girls on the spectrum.
http://www.zurama.com/gallery/12791/Mickies%20Fundraiser/
Zurama
http://parentsagainstautim.ning.com/
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Howard the Fish
by
Zurama on 07.05.08 - public
Howard is a lovable fish, who is content in his solitude. He is reluctant to engage in the world beyond his bowl, and prefers things to just stay as t...
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Someone posted this on Thoughtfulhouse list
by
Zurama on 07.05.08 - public
Shannon this could be good for Wynn too! I posted the question-Anyone know of a nutritional drink for malnourished 10 year old?
if you have a blend...
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Neocate
by
Zurama on 07.02.08 - public
Is anyone familiar with Neocate? I am wondering if this product is really 100% gfcf? I have never heard of them.
I just read the this company is pa...
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Share a Photo: Mealtime
by
Zurama on 06.28.08 - public
This is Mickie in 2000 during a feeding therapy session. His therapist at the time thought that if she put bananas all over Mickie's face and hands, h...
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~Triclosan and Liver Enzymes~
by
Zurama on 06.19.08 - public
I'm sorry to bring this up again, but I just can't shake it.
I remember that when Mickie was in the process of being diagnosed with Autism at Kais...
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What is Triclosan?
by
Zurama on 06.19.08 - public
"Triclosan is a chlorophenol, a class of chemicals suspected of causing cancer in humans. Externally, it can cause skin irritations, but since ".pheno...
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"Triclosan is a chlorophenol, a class of chemicals suspected of causing cancer in humans. Externally, it can cause skin irritations, but since ".phenols can temporarily deactivate the sensory nerve endings.contact with [triclosan] often causes little or no pain". "Internally, it can lead to cold sweats, circulatory collapse, convulsions, coma, and even death". Stored in body fat, it can accumulate to toxic levels, damaging the liver, kidneys, and lungs, and can cause paralysis, sterility, suppression of immune function, brain hemorrhage, decreased fertility and sexual function, heart problems, and coma."
http://www.lindachae.com/triclosan.htm
Chlorophenols are a group of compounds that are used in a number of industries and products. Exposure to high levels can cause damage to the liver and immune system. These substances have been found in at least 166 of the 1,467 National Priorities List sites identified by the Environmental Protection Agency (EPA).
What are chlorophenols?
Chlorophenols are a group of chemicals that are produced by adding chlorines to phenol. Phenol is an aromatic compound derived from benzene. There are 5 basic types of chlorophenols and 19 different chlorophenols.
Most chlorophenols are solid at room temperature. They have a strong, medicinal taste and smell. Small amounts can be tasted in water.
Some chlorophenols are used as pesticides. Others are used in antiseptics. Small amounts are produced when water is disinfected with chlorine. They are also produced while bleaching wood pulp with chlorine to make paper.
What happens to chlorophenols when they enters the environment?
* Chlorophenols can enter the environment when they are being made or used as pesticides.
* Most chlorophenols released to the environment go into water.
* Small amounts of chlorophenols enter the air.
* In the air, sunlight helps destroy these compounds and rain washes them out of the air.
* Chlorophenols stick to soil and sediments at the bottom of lakes, streams, and rivers.
* Low levels of chlorophenols in water, soil, or sediment are broken down and removed from the environment in a few days to weeks by microorganisms.
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Important Message From The MIND Institute!!
by
Zurama on 06.19.08 - public
This is a very important message from the MIND Institute at the University of
California, Davis regarding Triclosan and its direct connection to caus...
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~My Name is Mickie, and I Have Autism~
by
Zurama on 06.18.08 - public
Every time you click on this video money will be donated to AutismSpeaks.
http://www.whatkindofworlddoyouwant.com/videos
Tell_the_world
whatkindo...
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~A Dad Wrote a Song for his Autistic Son~
by
Zurama on 06.16.08 - public
and he put it up on Youtube and is getting some criticism and I thought we should show him some support.
http://www.youtube.com/watch?v=U-mafx0QHII...
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I got this email from Dr. Martin's people
by
Zurama on 06.14.08 - public
Dear Zurma,
Unfortunately you have been disqualified and will not be allowed to participate in the ACE Pathway Study. I have just recently discover...
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~Regressive Autism Video~
by
Zurama on 06.13.08 - public
Well since some of us are in a video sharing mood, I thought I would share one too.
http://www.youtube.com/watch?v=QRkAqL1fmJU...
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CFGF Peanut Butter Cookies
by
Zurama on 06.10.08 - public
Does anyone know where I could buy CFGF Peanut Butter Cookies. Mickie loves peanut butter and I want to try to teach him to eat cookies.
Also I won...
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~I Found this Photo~
by
Zurama on 06.08.08 - public
While looking in an old photo album, I found this photograph of Mickie. He was two months old and healthy, bright and so full of life.
Untouched by...
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~Mickie and the Bus Driver~
by
Zurama on 06.08.08 - public
On Friday, when I picked up Mickie from the bus, his bus driver says.....___I have to tell you what Mickie did today.
My first thought was oh God,...
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~Mickie's sister's recital video~
by
Zurama on 06.08.08 - public
Here is the video of some of what happened at the recital. We walked, since the school is just few blocks from our house. He cried for an hour and ha...
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~Mickie's Big Sister's Recital~
by
Zurama on 06.07.08 - public
Last night was one of Mickie's big sister's recital. I never take Mickie to thingslike this, because he doesn't do well in crowed places, but I though...
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~Visited ABA Program~
by
Zurama on 06.06.08 - public
I visited the ABA program the district offered me. I really liked it. It's located inside an elementary school, but when you walk into the classroom, ...
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~Possible good knews~
by
Zurama on 06.05.08 - public
I just received a call from Mickie's school district! I have been offered an ABA program for kids that are slightly younger then Mickie. The program w...
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Carrey, McCarthy lead march 4:22
by
Zurama on 06.05.08 - public
Actors Jim Carrey and Jenny McCarthy speak at a march to advocate for safer children's vaccines.
http://www.cnn.com/video/?/video/showbiz/2008/06/04/...
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W. John Martin Stripped of License
by
Zurama on 06.04.08 - public
W. John Martin Stripped of License -- Is All His Work Bogus?
By Bob Huntington and Cheryl Tai with Gail Kansky
W. John Martin, M.D., Ph.D. h...
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~I just had an epiphany~
by
Zurama on 06.03.08 - public
What if I check through all the progress reports from the teachers he has had and they all show that Mickie made progress, at least on paper.
On th...
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What if I check through all the progress reports from the teachers he has had and they all show that Mickie made progress, at least on paper.
On the other hand, what if the so called experts-speech pathologist and the Psychologist making the evaluations and making the recommendations for his educational plan for the last 4 years are to blame for Mickie's lack of progress.
If the people making the assessments and evaluations labeled him retarded, and as having the cognition level of a 1 to 2 year old, then he was being set up for failure and since the recommendations are for someone who was profoundly retarded, according to their so called expertise, then they can claim that he has made progress, but on what level.
I know that he scores low on the CAPA tests, but are those even ethical to use with a non-verbal autistic student?
Their expectations of him are very low, so his goals and objectives are very vague and weak and he is not expected to do much. All this time I would hear from the teachers that he was doing so well, and the progress reports have it in writing that he is doing well to, but I couldn't and can't see it. Does this make any since to anyone.
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Just Back From IEP Meeting
by
Zurama on 06.02.08 - public
It didn't go well at all. the District is going to fight me. Their idea of FAPE is very different from mine.
Poor Mickie has made no progress since e...
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IEP Today-Statement I'll be presenting
by
Zurama on 06.02.08 - public
To the attending members of the IEP meeting:
I have visited the two county classes sugested by Mrs. Doris Lee, at the Rancho Middle School campus...
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To the attending members of the IEP meeting:
I have visited the two county classes sugested by Mrs. Doris Lee, at the Rancho Middle School campus and I do not believe either class is appropriate for Michael's one of a kind needs.
Just because the program at Rancho Middle School, is working well for other children, does not mean that it is appropriate for my child. As stated in Educating Children with Autism, a book by the National Research Council that was sponsored by the US Department of Education, regarding specific intervention approaches or strategies, "No one approach is effective for all children, and not all children in outcome studies have benefited to the same degree."Teaching methods that work well for one child will many times have zero results with another. This is precisely what has happened in Michael's case. The National Research Council also recommends that data be kept on each individual child to determine whether the child is benefiting from the educational program. In order to improve the outcome he must be placed in the appropriate program.
Michael is entitled to an appropriate education - one that is tailored to his special needs. He has a legal right to an appropriate placement - one that will allow him to make educational progress. He exibits behaviors that interfere with his education; poor eye contact, self stimulatory behaviors, tics , he will grab others to get their attention, a very limited attention given to tasks, and he has no safety awareness, and a history of wondering away, all behavior problems, that make him a perfect candidate for the ABA Therapy.
ABA (Applied Behavioral Analysis), is a system of autism treatment based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences.
* Applied - principles applied to socially significant behavior
* Behavioral - based on scientific principles of behavior
* Analysis - progress is measured and interventions modified
Acording to researchers at the Lovaas Institute: ABA (Applied Behavioral Analysis) can be used with older children or even adults. Therapy utilizing applied behavior analysis is primarily meant to improve the quality of life of an individual with autism. This can be accomplished in early childhood, adolescence, and even later in life.
I often see him and hear about how he does puzzles-the same puzzles, he has been doing since he was two. Where is the challenge? I have high expectations for my son and a more restrictive environment is most appropriate. He will be getting more one on one attention. Someone will be working with him very closely throughout the day and more demands will be placed on him.
He has not made progress since entering the Alta Loma School District, and being entrusted to the San Bernardico County program, four years ago.
He is now able to use three sign language signs, which he learned, at home, not at school. Where it is true that the dangerous behavior of banging his head and pulling school personel's hair has all, but stopped, the school can not take credit for this improvement. The self injurous behavior and aggressiveness exibited by Michael was an attept to escape extraordinary abdominal pain. The improvement in this area, do to appropriate medical care, had nothing to do with Michael's current educational placement.
The program offered by the school system provides little or no chance of self-sufficiency for a child with the unique needs Michael has while, with the ABA therapy at the ABC Program, self-sufficency is a real possibility. The difference between the two methods are clear, and provision of the lesser program amounts to a denial of a free appropriate public education.
Sincerely
Zurama L. Johnston
Mother to Michael A. Martinez
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Chelation-DMSA/ALA
by
Zurama on 06.02.08 - public
New group about Chelation with DMSA with ALA.
DMSA.......it is a safe way to chelate heavy metals. DMSA clings on to Mercury and other heavy metals.
...
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~ABA vs Special class for Autistic students~
by
Zurama on 06.01.08 - public
I am getting a statement ready for tomorow's IEP meeting, when I'll be asking for the school to place Mickie in a private ABA program.
What would be...
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~Keeping our Kids Safe~
by
Zurama on 05.28.08 - public
Monday morning I walked out of my room as I do everyday, at 7 O'clock in the morning to find that the iron gate leading to the living room was wide op...
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Success means........
by
Zurama on 05.28.08 - public
That Mickie will let me hold him when the pain comes back, instead of banging his head on the floor....
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~Mickie Knows~
by
Zurama on 05.22.08 - public
I think he knows I'm trying to help him. He has started to look for my eyes and sometimes when I'm getting him ready for school or feeding him, he wil...
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~Tell Our Story~
by
Zurama on 05.22.08 - public
I recently made a video about Autistic Enterocolitis as described by Dr. Wakefield and I put it up on Youtube and yesterday I received a message from ...
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~They Are Still Kids~
by
Zurama on 05.22.08 - public
Many times our children with Autism, are in pain or frustrated, but my mom always reminds me that they are still kids and sometimes, they are just bei...
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Visit to a County Program
by
Zurama on 05.22.08 - public
Today I went to visit the county programs that are being offered to Mickie for next year. It turned out that the appointment was for tomorrow and not ...
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The World Seems Different
by
Zurama on 05.21.08 - public
I have not been able to see the world in the same way since Mickie got sick.
I wish I could have the same anticipation and excitement I used to h...
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Parents with healthy children
by
Zurama on 05.21.08 - public
I just love how parents with healthy children want to tell us how to best handle our kids with autism.
They have no clue! and I for one wish they ...
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I've been so Angry with God!
by
Zurama on 05.20.08 - public
In the years following Mickie's autism diagnosis, I found myself feeling very angry, especially at God.
I don't know why, after all he gave me a pe...
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Spontaneous Shows of Affection
by
Zurama on 05.16.08 - public
Months ago when Mickie gave me his first hug I couldn't have imagined that he would become more affectionate as time went by. He is doing it more ofte...
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Brawl in the Yellow Bus
by
Zurama on 05.15.08 - public
All the students that take the bus with Mickie to and from school have some degree of autism. Mickie is the only one seeing a DAN doctor and following...
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Autistic Enterocolitis
by
Zurama on 05.12.08 - public
After watching a recent video of Dr. Wakefield; I've been thinking a lot about what he said.
He calls Autistic Enterocolitis a new disease. He sai...
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After watching a recent video of Dr. Wakefield; I've been thinking a lot about what he said.
He calls Autistic Enterocolitis a new disease. He said that digestive distress is not part of Autism. I guess what got him to take a second look was the fact that parents would come to him, because their children's digestive distress was being ignored by other doctors. You know, that attitude, that a kid with autism, is just another crazy person and therefore don't have pain, they are just being autistic.n. This hold true for my Mickie, who has gone through periods of not eating and has lost weight to the point of having death reflected on his face and hearing from the doctor who saw me as a teenager, that he cant' help him, because he needed an Autism specialist. Every time I hear the words Autism Specialist I want to scream!! Most autism specialist are not specialist at all.
One thing in particular that Dr. Wakefield said, caught my attention; he said that if not treated early on this disease would become Crohn's disease-an inflammatory bowel disease. Crohn’s disease can affect any area of the GI tract, from the mouth to the anus, but it most commonly affects the lower part of the small intestine, called the ileum.
Mickie used to look normal and now he has lost all muscle tone. His extremities are very thin, much like a Crohn's Disease patient. I'm hoping that as time passes, with treatment and the diets, his body will start changing for the better. Someday I hope to be able to take him to Thoughtful House in Austin Texas, where Dr. Wakefield and his collages are helping so many other children like Mickie.
He talked about causation as being the Measles part of the MMR.
A multidiciplinary disease needing multidisiplinary approach.
The last statement he made, was simple, but powefull; he said.....____The child is not defective, he is sick.
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~My Mother's Day Morning~
by
Zurama on 05.12.08 - public
This morning I woke up to Mickie sitting at the kitchen table covered in coffee crumbs and powder creamer. He had also brought all his blankets out an...
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Dr. Andrew Wakefield
by
Zurama on 05.11.08 - public
I don't think we need to worry about Dr. Wakefield. He is going to be fine, because he stood by his convictions and told the truth.
Discoveries made ...
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The Autism Diagnosis
by
Zurama on 05.10.08 - public
It changes everything in our lives.
I suppose I could have just gone on with my life, but that was not an option.
How could I ever enjoy anything...
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Autistic Enterocolitis
by
Zurama on 05.10.08 - public
I have started a group to discuss information about autistic enterocolitis. Not all kids with autism have this condition, but I know many do, includin...
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I found the Article!!!
by
Zurama on 05.10.08 - public
Hillary's Vaccine Shortage
Daily Policy Digest
Health Issues / Moving Toward Universal Coverage
Monday, August 18, 2003
Everyone knows Amer...
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Hillary's Vaccine Shortage
Daily Policy Digest
Health Issues / Moving Toward Universal Coverage
Monday, August 18, 2003
Everyone knows America's vaccine industry is in serious trouble, with an ever dwindling number of producers and recent severe vaccine shortages. What everyone also should know is that the National Academy of Science's Institute of Medicine has now pinned much of the blame on the government vaccine-buying program promoted by former First Lady Hillary Rodham Clinton, according to the Wall Street Journal.
The panel of doctors and economists issuing a report on vaccines last week identified as a fundamental cause of the problem the fact that the government purchases 55 percent of the childhood vaccine market at forced discount prices. The result has been "declining financial incentives to develop and produce vaccines."
The root of this government role goes back to August 1993, when Congress passed Clinton's Vaccines for Children program. The plan, promoted by the Children's Defense Fund, was to use federal power to ensure universal immunization. So the government agreed to purchase a third of the national vaccine supply (the President and Mrs. Clinton had pushed for 100 percent) at a forced discount of half price, then distribute it to doctors to deliver to the poor and the un- and under-insured. As a result:
* Where 30 years ago, 25 companies produced vaccines for the U.S. market., today only five remain, and there is only one producer for a number of critical shots.
* Recent years have brought shortages of numerous vaccines, including those for whooping cough, diphtheria and chicken pox.
The Institute panel in effect said that one of Senator Clinton's pet projects is a bust. As Congress considers Medicare legislation that could do similar harm to prescription drug makers, the vaccine tale is a timely alarm, says the Journal.
Source: Editorial, "Hillary's Vaccine Shortage," Wall Street Journal, August 15, 2003; based on Committee on the Evaluation of Vaccine Purchase Financing in the United States, "Financing Vaccines in the 21st Century: Assuring Access and Availability," Institute of Medicine of the National Academies, August 4, 2003.
For text
http://online.wsj.com/article/0,,SB106091266280731300,00.html
For study text
http://www.iom.edu/includes/DBFile.asp?id=14454
For more on Health Issues (Moving Toward Universal Coverage)
http://www.ncpa.org/iss/hea/
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Was Hillary Clinton Behind the Vaccines Surge
by
Zurama on 05.08.08 - public
I remember reading not to long ago, on the Autism-Mercury list at yahoo, where I've been a member for the last six years that Hillary is in part respo...
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To All The Special Mothers
by
Zurama on 05.08.08 - public
My friend Gabby sent me this:
To All The Special Mothers
Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby...
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My friend Gabby sent me this:
To All The Special Mothers
Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want their baby to have ten fingers and ten toes. Mothers lie.
Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't close, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.
Some mothers left the hospital with a healthy bundle, then, months, even years later, you notice something not quite right,took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible. Not my child.That didn't run in your family. Could this really be happening in your lifetime?
I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw, muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them. Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes to be a mom to a special needs child."
You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.
From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church.
You're a wonder.
YOU ARE SPECIAL
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I want more for Mickie
by
Zurama on 05.07.08 - public
I want more for Mickie-and I wish the school district could see things my way.
For example: on his latest speech assessment the therapist talked a...
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Transicion into Middle School
by
Zurama on 05.06.08 - public
Today was the first meeting with the school district and the county to talk about Mickie's placement for next school year. Boy do they talk!!
I want...
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Compacted
by
Zurama on 05.05.08 - public
Mickie is doing much better now. I think he gets compacted and it has to do with yeast overgrowth. On Saturday morning I gave him a natural laxative a...
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More Pain
by
Zurama on 05.04.08 - public
Two nights ago I was home alone with Mickie. He had just finished his dinner and I though the day was finally over and I could rest.
Mickie started...
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Autism-Alzheimers-Parallels
by
Zurama on 05.02.08 - public
This group is for the discussion of the similarities found in both Autism and Alzheimers in particularly the feeling of the families being robbed of t...
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Premonition
by
Zurama on 05.01.08 - public
I remember having a dream a few months before Mickie was born, that something was going to be different about him.
In my dream I was walking with ...
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I Finally Desided!!
by
Zurama on 04.29.08 - public
To fight to get Mickie out of Public school. He is in a county program, that sucks so bad. It is weak and to me nothing more than a bunch of babysitte...
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Low Functioning Autism
by
Zurama on 04.28.08 - public
Low functioning Autism has got to be the most frustrating thing I have ever had to deal with. Everything in my life revolves around Mickie. I just kee...
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Low functioning Autism has got to be the most frustrating thing I have ever had to deal with. Everything in my life revolves around Mickie. I just keep thinking that there will be no place for him in the world if he stays the way he is now. So I keep looking for ways to get him out of himself, so when I'm gone he can fight for himself.
When he was diagnosed at 22 months I thought he would just start learning if he had intensive therapy, but he didn't and in fact got worse. By the age of four he was completely lost in his world. Chelation therapy did help get some of his eye contact back.
On Mickie's 10th birthday I made the decision to start doing something more about my frustration with his slow progress. I had stopped video taping him right after the diagnosis of Autism. The life just kind of went right out of me. I started making videos of him again. I signed on to Youtube and created a channel for Mickie.
The response to Mickie's videos has been interesting to say the least. Most people are very gracious, but some of the others are just plain nasty. Interesting enough some of the most negative comments have come from mothers of Autistic kids. I an not in any way ashamed of him, not by a long shot.
Some have accused me of portraying Autism in a negative way. I just record Mickie being himself or what I like to call, "Mickie in the Raw". I'm guessing Mickie is not what the majority of people with Autism act like. I just got tired of seeing it portrayed as something just perfectly normal. It is what is; and, what is not is a dirty little secret that has to be hidden so that it won't offend the sensibilities of some.
It's a cruel world out there! It's evident when I take him out in public and people do stare and give dirty looks and shush him, because he can get really loud and there just no way to stop him. Perhaps they have never seen anyone like Mickie, because Autism is portrayed as something else.
Autism isolates the entire family, not just the afflicted child. It is difficult to visit and to have visitors. It is very hard and expensive to find appropriate childcare.
It is very tough to describe what it feels like to see your child suffer and not be able to help him. The pain of knowing that no amount of therapy and no amount of money will ever give him back the potential he was born with, can seem at times, unbearable. The love that I feel for this little boy is more than I could imagine, but at the same time I morn every day for the child he once was and might never be again.
Once in a blue moon I get a glance at the precious little person trapped inside his confused body - that person who views the world so different than me. And it's at those moments that I remember why I was meant to be his mother. It's hard to see everyone else's life around you go on as if everything was just fine, yet you know it's not ever going to be the same for you.
Sometimes when I touch bottom and I imagine this little guy as a grown man, and me too old to watch over him, I realize that this is as close as I have ever been to hell.
Am I bitter? Yes! Am I happy? No!! This days happiness is just a word, a front for the rest of world to see, because in the end; I just want my son back.
Zurama
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In Memory on Dr. Rimland
by
Zurama on 04.27.08 - public
I found out about Dr Rimland's passing months after it happened. My computer had broken and I had no access to the internet for a few months. I of cou...
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~Mickie has been in pain~
by
Zurama on 04.26.08 - public
I have been away for a few days. Mickie ran out of the Threelac and this made him constipated and so the pain came back. Poor little guy started bangi...
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~Malabsorption~
by
Zurama on 04.18.08 - public
At the age of five, Mickie was given a diagnosis of malabsorption. His doctor at the time told me that I shouldn't worry, because there were no toxins...
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~Before Casein/Gluten Free~
by
Zurama on 04.18.08 - public
It was March 2003 and Mickie was now 5 years old and has lost all speech by now.
He had started to have this episodes. I didn't know what to make ...
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It was March 2003 and Mickie was now 5 years old and has lost all speech by now.
He had started to have this episodes. I didn't know what to make of them. He screams desperately, and as the weeks pass he gets worse. The episodes happen at school, at home, in the middle of the night.
Mickie seemed to be in pain, but no one can tell me how to help him. No one in our house has been able to sleep-it's been four months. He would be happy one minute and sad the next.
Late in May, I found a nice doctor who ordered some blood work upon my request.
One night I went as far as faking a head injury and taking him to Los Angeles Children's Hospital. It proved to be useless, because the doctor on duty that night refused to examine him. Another testament, that when an autistic person needs medical attention, he or she is treated like just another crazy person. I never took him back there again.
The next day Dr Alejandro, his pediatrician saw him and with the blood work being ready, was able to tell us that Mickie suffered from Malabsoption, but to not worry, that there were no toxins going into his blood. What I didn't know then, was how inaccurate that statement was.
His Sed-Rate was at 33, which shows inflammation and It should be under 10.
A few days later Mickie saw a Gastroenterologist. I showed him the blood work and he told me that Low IgA would make Mickie prone to gastrointestinal infection. He also told me that with High IgE, Mickie was to stay away from Dairy. Finally there was a reason for his unexplained pain.
I took him off milk and went a step further and took him off cereals. Within days the diahrrea had stopped and his pain had gone away.
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Heavy Metals Toxicity
by
Zurama on 04.13.08 - public
There seems to be a large amount of children being diagnosed with Autism, who are in reality suffering from Heavy Metal Toxicity.
When my son Micki...
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There seems to be a large amount of children being diagnosed with Autism, who are in reality suffering from Heavy Metal Toxicity.
When my son Mickie was first diagnosed with Autism, I had no idea that he was actually Mercury Toxic, via-thimerosal containing vaccines. By the time I realized what had happened he was four years old and had been regressing since he was 9 months old.
He is 10 years old now and early intervention through Regional Centers and years of ABA therapy have done nothing for him. He has underlying biomedical issues that culminated in Autism like symptoms. Today I want to write about heavy metal toxicity.
This is what I have learned in the process of helping my son. When he was four I attempted to chelate him. He did make improvements in socialization and his eye contact improved, his language did not improve much, aside from a word here and there every few months he did not talk. He has since lost those few words.
Back then, I did not addressed the digestive issues as recommended by that DAN Protocol and in fact his digestive problems got worse. I had to stop chelation after four months and it has taken years to stabilize him.
Depending on how resent the exposure was, mercury may or may not show up. Just because it doesn't show up, doesn't mean it's not there. The Autism Research Institute reports that chelation works in 73% of the time.
I am not sure when babies develop the blood, brain, barrier, but you are able to find out if he is toxic while the barrier is open, he can have chelation therapy before it closes and he should recover completely. There is always some recovery, but some say that nothing can cross the BBB, and others say that ALA will cross it.
DMSA should be administered with ALA in small doses every three to four hours, preferably round the clock. If you prefer to only chelate during the day, it can be done. Three days on and 11 day off or as many days off as on. You must give the body time to rest. Supplementation with minerals is essential, because DMSA depletes the body of Zinc and other essential minerals.
If it was not too resent mercury most likely has now gone into hiding. Mercury hides in the soft tissues of the body including the brain. Lead accumulates in you bones if is not excreted from the body right away. DMSA is administered prior to an urine test, will bring some of it out then first morning urine is collected.
A note about DMSA.......it is the safest way to chelate heavy metals and it has been tested and approved to use on children, which is more then we can say about childhood vaccines.
Also very important is the fact that chelation is a very slow process. Don't expect drastic changes in a short period of time. You can only administer a small amount, because the body can't excrete so much of the metals at once. 100 rounds is about how much it takes for full recovery.
A hair analysis is very accurate in determining if one is mercury toxic. A good indication of heavy metal toxicity is when your minerals are all out of whack, even if mercury itself is not showing on the first hair test. I will show in time. Mickie's first and second hair analysis did not showed mercury or lead, but showed he was cadmium toxic. His most recent test shows that he is Lead, Aluminum and Cadmium toxic. His mercury level wend from .01 to .10. Heavy metals don't belong in our bodies.
I wanted to share this information, because I am chelating Mickie right now and the information is still fresh in my mind. He had 6 round of DMSA with ALA. He has started to say Da and Dee. He started using his Da's and De's to sing.
A few month later, he said mama for the first time in nine years.
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Low Dose Naltrexone
by
Zurama on 04.13.08 - public
FDA-approved naltrexone, used to block opioids in the brain. Used in a low dose, can also boost the immune system.
Naltrexone itself was approved b...
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FDA-approved naltrexone, used to block opioids in the brain. Used in a low dose, can also boost the immune system.
Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.
It is one medication that according to Dr. William Shaw Ph.D should be added to the anti-yeast and free of casein and gluten diet and Nystatin protocol for children with autism. Naltrexone blocks opioids in the brain. The opioids from milk and wheat may slow the brain down.
At low doses, naltrexone may help clear the brain of opioids which have already gotten into the brain. In the past studies of this protocol have been done using doses that were to high and therefore showed that sometimes naltrexone has the opposite effect of what is intended. The doses used were 25 to 50 milligrams per day, which can cause pain. These studies failed to include the combination of the elimination of dairy and wheat products.
In autistic children where immune deficiencies are present, naltrexone can boost the immune system when given in low doses.
It may also help repair damage to the Myelin Sheath-the fatty covering of the perypheral nerves.
Reicheit KI et al. Gluten, milk proteins and autism: Results of dietary intervention on behavior and urinary peptide secretion. J. Applied Nutrition 42: 1-11, 1990.
Bovard, et al. Low-dose naltrexone effects on plasma chemistries and clinical symptoms in autism: a double-blind-placebo controlled study Psychiatry
Research 58: 191-20, 1995
Roy S, Loh HH. Effects of opioids on the immune system. Neurochem Res 1996;21:1375-1386
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The SCD Diet-Gut Issues in Autism
by
Zurama on 04.13.08 - public
Of the many issues affecting Autistic individuals none is more prevalent then the gut issues. In my son's case it was diagnosed as malabsobtion. I was...
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Of the many issues affecting Autistic individuals none is more prevalent then the gut issues. In my son's case it was diagnosed as malabsobtion. I was given this diagnosis when he was five and sent home with no information that could help him.
I had an immune panel done and found out he had an Immunoglobin A deficiency and high inmunoglobin E. I took the results to a gastroenterologist who told me that due to his high IgE could not have any dairy and that his immune deficiency made him prone to gastrointestinal infections.
I remember that I took him off milk and cereals. That diet change, stopped the chronic diarrhea,which he had suffered with, since his first birthday. I thought that would be the end of that, but no. He then developed constipation, which caused him a lot of pain.
For eight years my Mickie woke up during the night, giggling, crying screaming or running through the house. During the last three years or so, he has slept very little. He could not lay flat on the bed, but slept sitting up. To me this was the most troublesome part of his issues.
He stimmed constantly and had horrible tantrums or meltdowns.
While networking with other parents I learned about a special diet called SCD diet or Specific Carbohydrate Diet. This diet is described in detail in the book "Breaking The Vicious Cycle" Intestinal Health Through Diet, by Elaine Gottschall. The reason behind this diet is simple. It is supposed to starve the yeast in the stomach, by depriving it of fermentable carbohydrates.
I heard from other parents of the benefits of this diet had brought to their autistic children's health. I decided to implement the diet with Mickie about one month ago. At about two days into the diet, while I was dressing him, he gave me a spontaneous hug. I remember just staying really still. Up to that point this kind of behavior meant that he was going to pull my hair or tug at my clothes and try to hurt me, but his big sister that could see his face said.....___It's Okay mom, he's smiling. I think he just wants a hug. So I hugged him back and proceeded to dress him once more, then he did it again.
The last time Mickie gave me hug was so long ago, I had forgotten how it felt.
A few more days went by and he stopped stimming, seemed more aware of his surroundings, started to notice our pets and even attempted to talk. By the 15Th day he was sleeping through the night. He was no longer sitting up, but was laying flat on the bed.
I have not seen change like this in him since I took him off Casein and Gluten five years ago. Slowly but surely.........
www.breakingtheviciouscycle.info
British Medical Journal, Lancet, The American Journal of Gastroenterology (Wakefield) 95:2285-2295.
Hovarth, K., 1999. Gastrointestinal abnormalities in children with autistic disorder. Journal of Pediatrics 135:559-63
Ashwood, P., S.H. Murch, A. Anthony., A. A. Pellicer, F. Torrente, M.A. Thomson, J.A. Walker-Smith, and AJ. Wakefield. 2003. Intestinal Lymphocyte populations in children with regressive autism: Evidence for extensive mucosal immunopathology. Journal of Clinical immunology 23(6):504-517
Buie, T., G. Winter and R. Kushak. 2002.
J.O. Hunter. 1991.
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~Being Proactive~
by
Zurama on 04.13.08 - public
I was very depressed back in September when Mickie turned 10, because of the lack of progress I had seen and on top of that he was becoming anorexic, ...
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I was very depressed back in September when Mickie turned 10, because of the lack of progress I had seen and on top of that he was becoming anorexic, loosing his hair and was becoming very violent towards himself and others. He had not slept through the night in over nine years.
Turned out that he just needed better nutrition and his hair has grown back with a vengeance and even his sister is jealous of his hair now. His aggressiveness was nothing more than his way to cope with pain in his digestive system.
I took that sadness and I turned it around. I started being more proactive. I went to this website: http://www.generationrescue.org and there I found stories of hope and recovery. They also had a list of rescue angels, which are parents just like us who are recovering their children. They will walk you through it.
I know that you must think it's too late, because your son is not little anymore or maybe you think that the window of opportunity has closed, but I am here to tell you it's not to late!
Mickie said Mama yesterday for the first time in nine years. It can happen to your son or daughter too. With digestive enzymes, Probiotics, multivitamins, multi-minerals and diet modifications most Autistic kids and even older ones can have a better quality of life.
You can reverse many of the worse symptoms. So they are still autistic, but at least they can continue to be who they are, without pain and frustration.
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The Autism Community Agrees That....
by
Zurama on 03.27.08 - public
I think you told the truth.
I always know that when I need to vent I can come to Foggyrock and speak my mind. So many times in other sites I have ...
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Mickie has started singing!
by
Zurama on 03.06.08 - public
Hi everyone?
I just wanted to share something special. The day that he had the DAN
doctor's appointment, after we got home he started singing. Just ...
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Autistic not Retarted or Slow
by
Zurama on 02.11.08 - public
This week has been full of surprises. Mickie who has been unable to have a consistent form of communication learned 3 sign language words in 2 days.
...
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A Meltdown
by
Zurama on 01.10.08 - public
Yesterday morning Mickie had a horrible meltdown. I felt really bad all day and though I wanted to write about it, I just couldn't. I felt drained the...
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