• Meets: 2nd Saturday of each month
• More Info: (info in item #1 for meeting topics and details) CLICK HERE TO FIND A MEETING

Autism is Preventable and Treatable

In conjunction with the Defeat Autism Now! Conference in Washington DC this April, advocacy groups are joining together to launch a day of lobbying for our children on Capitol Hill and in their states. The "Mercury Generation" website is under construction and will be available soon.

WHY?    Because we are a "potent national force" as described in a New York Times article, and we want our representatives to make our children a priority. 

WHERE?   Upper Senate Park, Washington, DC

WHEN?   Thursday, April 6, 2006 @  9:00 am –  March (line up) feet moving at 9:15,  10:00 Rally/Press Conference  – Times may vary a little to support speaker schedules. 

WHO?   Organized and supported by A-CHAMP, Autism Research Institute, Coalition for Mercury Free Drugs, Generation Rescue, Moms Against Mercury, National Autism Association, NoMercury, National Vaccine Information Center , and a growing list of organizations.

WHERE TO STAY?   We are pleased to offer very special room rates at the Hilton Washington Hotel, the site of the DAN! 2006 Spring Conference, at 1919 Connecticut Ave. NW , Washington, DC. The low rate of $158.00 per night is available exclusively. Call New Hope Travel, toll free, at 1-866-208-0207. Availability is extremely limited and we strongly urge you to make your reservations early. It would be to everyone's advantage to try and get a couple of roommates to cut down on the cost of the rooms.

We understand the limitations families experience. It is not necessary to be attending DAN! the hotel accommodations are being arranged and we will update you about this soon.  

Registration for the DAN! Conference at:   http://www.danconference.com/ 

WHAT YOU CAN DO NOW?   If you plan to attend The Mercury Generation March, please register here

http://capwiz.com/a-champ/issues/alert/?alertid=7938006&type=CU 

Call your representative to schedule an appointment on April 6. Tell the scheduler you would like to see the representative personally, or a senior policy advisor if an in-person meeting with the representative cannot be arranged.

Contact information for your representative is available at    http://capwiz.com/a-champ/home/ Go to the bottom of the page to Congress & President and enter your zip code. Your representative's picture and contact information will be available at the bottom of this page. Click "info" and all contact and back ground information will be on this page.  

WHAT TO BRING?   Personally-designed signs, posters, etc. Consider writing a brief personal note that you can leave with your representative along with a picture of your child.

WHAT TO WEAR?  Weather will be unpredictable, prepare for anything. Wear comfortable clothing.  Rally T-Shirts are being designed and will be sold prior to the rally.

Maps will be provided. March route will be posted soon.

List of VIP Speakers will be announced closer to event. 

Information will be continually updated.

Mark your calendar for April 6th. Raise your voice for your child!

Official RALLY WEB SITE: www.themercurygenerationmarch.org

'As individual fingers we can easily be broken,
but all together we make a mighty fist.'   –  Sitting Bull

By Dan Olmsted

WASHINGTON, Feb. 9 (UPI) -- As doctors and health authorities fight state bans on mercury in vaccines and keep giving it to kids and pregnant women, one fact stands out: their certainty.

The image of pediatricians and public officials as valiant defenders of mercury takes a bit of getting used to, given their longstanding efforts to keep the toxic element out of our food, our bodies and the environment.

No reasonable person -- let alone health professional -- would advocate keeping mercury in childhood vaccines unless they were absolutely certain it was an exception to this lethal legacy.

That's especially so because vaccines can be made without the mercury preservative, called thimerosal. You can take it out and still protect the health of American children through vaccination, and if you had a shred of doubt about its safety, surely you would.

If you keep it in, you had better be right.

But what is the real degree of certainty that thimerosal is safe? Is it absolute? Beyond a reasonable doubt? A preponderance of the evidence -- the lesser standard that applies in civil cases but not when someone's freedom (or life) is at stake?

Here's the kind of thing that makes doctors -- most of whom have no more ability than you or I to investigate the safety of vaccines for themselves -- feel so certain. It's a paper titled "Vaccine Safety Controversies and the Future of Vaccination Programs," and it appears in the November 2005 issue of The Pediatric Infectious Disease Journal.

The authors are from the U.S. Centers for Disease Control and Prevention, which recommends the childhood immunization schedule; the United Nations World Health Organization, which oversees the vaccination of tens of millions of people worldwide every year, and several big universities. The report was supported by "unrestricted grants from GlaxoSmithKline Biologicals, Sanofi Pasteur MSD, several universities and other institutions."

"Thimerosal has been used for (more than) 60 years in infant vaccines and in other applications and has not been associated with adverse health effects in the general population, except when persons have been exposed to amounts many orders of magnitude greater than found in vaccines or pharmaceuticals," the authors write.

That's a ringing endorsement of safety (whether it's supported by the data is an issue I'll address in upcoming columns). But keep reading: "It should also be borne in mind that the risks of thimerosal-containing vaccines to the fetus, premature infant and low-weight infant have insufficiently been studied."

Whoa. "Insufficiently studied" -- after more than 60 years of giving thimerosal to pregnant women and babies of every size and shape? Nonetheless, the CDC recommends flu shots for pregnant women and 6-to-23-months-olds and won't recommend thimerosal-free versions. As a result, most flu shots still contain mercury.

Another new study is condescendingly titled, "When science is not enough -- a risk/benefit profile of thimerosal-containing vaccines," by Australians C. John Clements and Peter B. McIntyre in the journal Expert Opinion on Drug Safety:

"Thimerosal is safe as a vaccine preservative, and should continue to be used in settings where accessibility and cost require that multi-dose vials of vaccine are available."

Clements advises the WHO on vaccine policy; McIntyre is director of Australia's National Center for Immunization Research and Surveillance of Vaccine-Preventable Diseases.

"The overwhelming weight of scientific opinion rejects the hypothesis that neurodevelopmental abnormalities are causally related to the use of thimerosal in vaccines," they point out.

This is the kind of ammunition public health officials and the American Academy of Pediatrics are firing back at proponents of mercury bans --"overwhelming" evidence that thimerosal is safe. In Illinois, the state AAP vigorously opposed the ban.

"Though well intended, these bills do not advance public health and could inadvertently diminish our state's efforts at fighting influenza," the AAP said. "Though it is a mercury-containing compound, thimerosal does not pass from the bloodstream into the brain to any significant degree."

The state legislators listened politely to that dubious assertion -- and voted to limit thimerosal in childhood vaccines anyway. But that was not the last word.

As reported by R. L. Nave in the Illinois Times last month: "Citing cost concerns and a potential shortfall for the upcoming flu season, the Illinois Department of Public Health filed for a 12-month exemption to the Mercury-Free Vaccine Act, passed last summer to limit the use of vaccines containing mercury. However, child-health-care advocates who lobbied for the bill's passage are upset by what they believe was a premeditated attempt by IDPH to circumvent state law."

This is what you call chutzpah -- public health authorities thwarting the express will of the people, certain that flu shots will save humanity and mercury never hurt anybody. Does the governor never fire anyone?

Almost lost in this crossfire is the simple fact that in 1999, these selfsame health authorities -- the CDC, the Public Health Service, the pediatricians, the family physicians -- urged drug companies to remove thimerosal from childhood immunizations in the United States as soon as possible.

Most childhood vaccines -- in the United States, not overseas -- are now thimerosal-free. But that's hardly a blanket reassurance, because most flu shots do contain thimerosal.

Yet the CDC is still studying whether thimerosal causes autism.

"We do agree the preponderance of evidence to date suggests there is no association between thimerosal and autism," CDC spokesman Glen Nowak told us last month. But he said CDC Director Dr. Julie Gerberding is committed to exploring all possibilities until the cause or causes of the disorder are identified.

"Dr. Gerberding has made it clear the CDC has not ruled out anything as possible causes of autism, including thimerosal," Nowak said. "Science is a dynamic process. We have continued to fund studies to look at the role, if any, of thimerosal."

Given these caveats, what would you do? Well, there are two maxims of medicine that might apply. "First, do no harm," is the obvious one.

The second, related concept is the precautionary principle which, according to wikipedia.org, "is the idea that if the consequences of an action are unknown, but are judged to have some potential for major or irreversible negative consequences, then it is better to avoid that action."

So: Vaccines don't need mercury. Even government experts acknowledge some possible risks -- to the fetus, for example -- are insufficiently studied 60 years on. A link to autism has not been ruled out. They're continuing to investigate, as they should.

But the doctors and their public and private allies are battling state by state to stop mercury bans, and the CDC won't recommend a thimerosal-free flu shot for kids and pregnant woman. There's a phrase for this approach:

Bombs away.

E-mail: dolmsted@upi.com

Frist denies protection was added in secret

By BILL THEOBALD
Gannett News Service

Published: Thursday, 02/09/06

WASHINGTON — Senate Majority Leader Bill Frist and House Speaker Dennis Hastert engineered a backroom legislative maneuver to protect pharmaceutical companies from lawsuits, say witnesses to the pre-Christmas power play.

The language was tucked into a Defense Department appropriations bill at the last minute without the approval of members of a House-Senate conference committee, say several witnesses, including a top Republican staff member.

In an interview, Frist, a doctor and Tennessee Republican, denied that the wording was added that way.

Trial lawyers and other groups condemn the law, saying it could make it nearly impossible for people harmed by a vaccine to force the drug maker to pay for their injuries.

Many in health care counter that the protection is needed to help build up the vaccine industry in the United States, especially in light of a possible avian flu pandemic.

The legislation, called the Public Readiness and Emergency Preparedness Act, allows the secretary of Health and Human Services to declare a public health emergency, which then provides immunity for companies that develop vaccines and other "countermeasures."

Beyond the issue of vaccine liability protection, some say going around the longstanding practice of bipartisan House-Senate conference committees' working out compromises on legislation is a dangerous power grab by Republican congressional leaders that subverts democracy.

"It is a travesty of the legislative process," said Thomas Mann, senior fellow at the Brookings Institution, a Washington think tank.

"It vests enormous power in the hands of congressional leaders and private interests, minimizes transparency and denies legitimate opportunities for all interested parties, in Congress and outside, to weigh in on important policy questions."

At issue is what happened Dec. 18 as Congress scrambled to finish its business and head home for the Christmas holiday.

That day, a conference committee made up of 38 senators and House members met several times to work out differences on the 2006 Defense Department appropriations bill.

Rep. David Obey, D-Wis., the ranking minority House member on the conference committee, said he asked Sen. Ted Stevens, R-Alaska, the conference chairman, whether the vaccine liability language was in the massive bill or would be placed in it.

Obey and four others at the meeting said Stevens told him no. Committee members signed off on the bill and the conference broke up.

A spokeswoman for Stevens, Courtney Boone, said last week that the vaccine liability language was in the bill when conferees approved it. Stevens was not made available for comment.

During a January interview, Frist agreed. Asked about the claim that the vaccine language was inserted after the conference members signed off on the bill, he replied: "To my knowledge, that is incorrect. It was my understanding, you'd have to sort of confirm, that the vaccine liability which had been signed off by leaders of the conference, signed off by the leadership in the United States Senate, signed off by the leadership of the House, it was my understanding throughout that that was part of that conference report."

But Keith Kennedy, who works for Sen. Thad Cochran, R-Miss., as staff director for the Senate Appropriations Committee, said at a seminar for reporters last month that the language was inserted by Frist and Hastert, R-Ill., after the conference committee ended its work.

"There should be no dispute. That was an absolute travesty," Kennedy said at a videotaped Washington, D.C., forum sponsored by the Center on Congress at Indiana University.

"It was added after the conference had concluded. It was added at the specific direction of the speaker of the House and the majority leader of the Senate. The conferees did not vote on it. It's a true travesty of the process."

After the conference committee broke up, a meeting was called in Hastert's office, Kennedy said. Also at the meeting, according to a congressional staffer, were Frist, Stevens and House Majority Whip Roy Blunt, R-Mo.

"They (committee staff members) were given the language and then it was put in the document," Kennedy said.

About 10 or 10:30 p.m., Democratic staff members were handed the language and told it was now in the bill, Obey said.

He took to the House floor in a rage. He called Frist and Hastert "a couple of musclemen in Congress who think they have a right to tell everybody else that they have to do their bidding."

Rep. Dan Burton, R-Ind., also was critical of inserting the vaccine language after the conference committee had adjourned.

"It sucks," he told Congress Daily that night.

Rep. Jim Moran, D-Va., another member of the conference committee, was upset, too, a staff member said, because he didn't have enough time to read the language. The final bill was filed in the House at 11:54 p.m. and passed 308-102 at 5:02 the next morning.

The Senate unanimously approved the legislation Dec. 21, but not before Senate Democrats, including several members of the conference committee, bashed the way the vaccine language was inserted.

"What an insult to the legislative process," said Sen. Robert Byrd, D-W.Va., a member of the conference committee. Byrd is considered the authority on legislative rules and tradition.

President Bush signed the legislation into law Dec. 30.

When asked about Frist's earlier denial, spokeswoman Amy Call said: "Bill Frist has fought hard to protect the people of Tennessee and the people of the United States from a bioterror emergency and that's what he did throughout this process."

Hastert's office did not provide a response.

Not against the rules

The practice of adding to a compromise bill worked out by bipartisan House-Senate conference committees, while highly unusual, is not thought to violate congressional rules.

Some Senate and House Democrats have proposed banning the practice as part of broader attempts at ethics reform in Congress.

They, consumer groups and others with concerns about possible harm caused by vaccines charge that the move was a gift by Frist to the pharmaceutical industry, which they point out has given a lot of campaign cash to the Nashville doctor through the years.

"The senator should be working to ensure there are safe vaccines to protect American families rather than protecting the drug industry's pocketbooks," Pamela Gilbert, president of Protect American Families, said in a statement. The group is an alliance of consumer, labor and advocacy organizations.

Frist has received $271,523 in campaign donations from the pharmaceutical and health products industry since 1989, according to the Center for Responsive Politics, a watchdog group.

He is also a possible candidate for president in 2008.

In the interview, Frist reiterated how important he thinks the vaccine protections are.

"The United States of America, if a pandemic occurs, is totally unprepared," he said. "And the only way we are going to be prepared is rebuilding our manufacturing base to build a vaccine infrastructure that can be timely and responsive. We don't have it today."

Frist has long advocated liability protection for vaccine makers, and it was widely reported that he would attempt to attach the legislation to the Defense Appropriations bill because it is considered must-pass legislation.

Ken Johnson, senior vice president of the Pharmaceutical Research and Manufacturers of America, said that, while the group favors liability protection, it did not take a position nor did it lobby on behalf of the law that passed. •

Friday, February 10, 2006

State Representative David Linsky, D-Natick, today announced this week that the House of Representatives unanimously approved legislation to regulate the sale and disposal of products containing mercury, a well-known environmental contaminant and public health threat.

    Linsky, who has been a member of the Joint Committee on Environment, Natural Resources and Agriculture, voted in favor of the bill.

    "Mercury is an incredibly toxic substance that has had almost no regulation," Linsky said in a press release. "This is a common-sense bill that will protect people, animals and environment from harm due to mercury exposure. I don't think anybody realizes just how high the risks are - and how preventable as well."

    The legislation focuses on the production, disposal, collection and labeling of products that contain mercury. If mercury-added products are sent to landfills and incinerators, the substance is emitted into the air and ends up in lakes, streams, rivers and reservoirs. Most human exposure to mercury comes from eating fish and can lead to brain damage and learning disabilities.

    The bill, which now moves to the Senate for consideration, also mandates the Department of Environmental Protection to create an education program to inform individuals and businesses about mercury-added products and offer instruction on their safe disposal. "Education is key," Linsky said. "People just don't think about mercury as something to worry about."

    Four other New England states - Vermont, Rhode Island, Connecticut and Maine - have enacted similar laws restricting the use and disposal of mercury.

Bestselling Book on Mercury and Autism Updated with New Science, Politics and Media Reports; Title Chosen as a “Reading Group Gold” Selection for Winter 2006  

NEW YORK – The New York Times bestseller “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic, A Medical Controversy” ( St. Martin’s Press, $14.95 ISBN: 0-312-326459-0 ), will be issued in PAPERBACK this February, with a new postscript that updates readers on the growing controversy over the past year.

Evidence of Harm is the story of parents with autistic children who learn that their kids received levels of mercury in their vaccines far in excess of Federal safety limits. They take on Big Business, Big Science and Big Government with a radical new theory on the cause, uncovering compelling evidence that a mercury-based vaccine preservative, Thimerosal, could have played a role in the disease. Today, the parents and their medical, scientific, legal, and political allies are getting closer to establishing their claim.

The paperback edition contains a year’s worth of new information, including:

• Newly LEAKED TRANSCRIPTS suggesting US Government pressure on the
  Institute of Medicine to reject an association between vaccines and autism.
• Evidence showing that some IOM reviewers had unpublicized CONFLICTS OF
  INTEREST with the government and drug industry.
• Calls on Capitol Hill for a thimerosal INVESTIGATION, and new attempts to
  access secretive vaccine safety data.
• Recent thimerosal HEADLINES with news about Don Imus, Robert Kennedy, Jr.,
  Sen. Joe Lieberman, Sen. Chuck Hagel and others.
• Newly published DATA showing that vaccine mercury accumulates in
  the brain, which can cause the same brain swelling found in autistic people.

By most accounts, autism is now epidemic in the United States. In the 1990's, reported autism cases among American children began spiking, from about 1 in 10,000 children in 1987 to a shocking 1 in 166 today.  In this period, new shots containing Thimerosal were added to the nation's already crowded vaccination schedule.In 1999, the FDA announced that children were being exposed to mercury at very young ages at levels far exceeding federal regulations, but the public health establishment failed to take parental concerns about the impact seriously. Evidence of Harm explores both sides of this issue, which has pitted families and their allies against the federal government, public health agencies, medical academies, and powerful pharmaceutical giants. 

A “READING GROUP GOLD” SELECTION

The paperback edition of Evidence of Harm has been selected as one of four Reading Group Gold titles for Winter 2006. This new program, being launched by St. Martin’s/ Griffin, is designed to make reading group information for books accessible to consumers and booksellers. Each season, a select number of Griffin trade paperbacks will have a medallion on the cover to denote them “Reading Group Gold” titles.

These outstanding titles are selected by an in-house committee of St. Martin’s Press/Griffin as the best reading group books of the season. They will include additional material in the back of the books, including author interviews and reading group questions. More information about the program will soon be available at: www.readinggroupgold.com

MOVIE RIGHTS OPTIONED

 Evidence of Harm has also been optioned by a rising MOVIE COMPANY: Los Angeles-based Participant Productions. Formed to produce films on important current topics, Participant has released titles that earned strong buzz in 2005. Its movies were nominated for eight Golden Globe Awards, including Best Drama for “Good Night and Good Luck,” Best Dramatic Actress (Charlize Theron) for “ North Country,” and Best Director (George Clooney) for “Syriana.” Two respected producers have signed onto the Evidence of Harm project: Nick Wechsler, who recently produced “ North Co untry ,” and Ross Bell, producer of “Fight Club.”

Meanwhile, author David Kirby has just been named “PERSON OF THE YEAR” by Spectrum, the nation’s largest and most influential autism magazine. Kirby, who will appear on the cover of the February issue, will be honored by the magazine at a reception in Long Island, NY, this spring.

For more information, please contact:
Elizabeth Coxe , Publicist, St. Martin’s Press: 646-307-5563/ elizabeth.coxe@stmartins.com
Vicki Lame , Publicity Assistant, St. Martin’s Press: 646-307-5553/ vicki.lame@stmartins.com

More From David Kirby
Mercury Rising
’Evidence of Harm’ author on the recent thimerosal media frenzy by David Kirby

Exactly six years ago, the U.S. Government announced that most American children were being exposed to mercury in vaccines that surpassed federal safety levels and called for the removal of the mercury-based preservative, thimerosal, from childhood shots “as soon as possible.”

Just over a year ago, the esteemed Institute of Medicine found no link between thimerosal and the development of autism. Many people assumed -- and many hoped -- that the IOM report would be the last word on the emotional debate, closing the door on the thimerosal drama forever. But they were wrong.

Since that report was issued in May 2004, extraordinary developments have transpired in the field of scientific research, throughout the American mass media, and within the high-powered halls of Washington.

It is hard to pick up the paper, turn on the TV or tune in to “Imus in the Morning” without hearing chatter about thimerosal and whether it causes autism or not.

Welcome to the story that just won’t go away. My main motivation for writing the book, Evidence of Harm, Mercury in Vaccines and the Autism Epidemic, ( St. Martin’s Press 2005) was to spark a national conversation about the effects of mercury on developing fetuses and infants, and whether a subset of children might be genetically susceptible to heavy metal toxicity. I never dreamed that the debate would become so loud and heated – so fast.

Since the IOM report was issued dismissing any link between thimerosal and autism, there has been a dizzying flurry of activity and information to emerge around the hot-button issue. What follows is a brief summary for those who are trying desperately to keep up (which is anything but easy).

ADVANCES IN SCIENCE

Very recent studies, presented at major autism conferences or published in respected, peer-reviewed journals, have reported intriguing findings that, when taken together, could support a link between mercury and autism. Some of this work has been derided by the Centers for Disease Control and Prevention as “junk science”

conducted by “charlatans.”

Study: Comparison of Blood and Brain Mercury Levels in Infant Monkeys Exposed to Methylmercury or Vaccines Containing Thimerosal Source:

University of Washington/National Institutes of Environmental Health Sciences – Published in Environmental Health Perspectives. Summary:

In primates, ethylmercury from vaccines (in the form of thimerosal), once it enters the brain, converts to inorganic mercury at two to three times the rate of methylmercury, which is found in fish.

Inorganic mercury lacks a natural transport system out of the brain, where it remains for long periods of time, perhaps indefinitely. A previous study by the same team found that inorganic mercury trapped in the brain resulted in serious changes in brain tissue, including unchecked proliferation of microglial cells (white cell matter), which is consistent with the finding of |big brains| in autistic children.

Study: Altered cytokine profile in children with autistic spectrum disorder (ASD): Evidence for immune dysregulation. Source: University of California – M.I.N.D. Institute, Presented at the 2005 International Meeting for Autism Research. Summary: Children with autism have a markedly different immune profile from normal kids.

They are found to have increased autoimmunity, extremely high levels of certain immune cells and cytokines, and an imbalance of immune cells to antibodies (TH1 vs. TH2 response). These abnormal conditions also appear in the literature on mercury toxicity.

Study: National Autism Prevalence Trends From United States Special Education Data Source: John Hopkins Bloomberg School of Public Health – Published in Pediatrics. Summary: The rate of increase in new cases of autism among children born every year in the United States was relatively stable until 1987, when the rate suddenly began to spike, and then continued to rise among children born in each subsequent birth cohort. A second spike in the rate of increase was noted in 1992, a few years after which, the rate began to level off. (It is interesting to note that, between 1987 and 1992, with the introduction of new thimerosal containing vaccines, total mercury exposure from infant immunization went from 75 to nearly 240 micrograms). Meanwhile, the reported incidence of mental retardation and other childhood disorders remained constant, meaning that “diagnostic substitution” was not an explanation for the rise in autism cases.

Study: Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism Source:

University of Arkansas – Arkansas Children’s Hospital published in Biology. Summary: Children with autism have extremely low or depleted levels of sulfur-based bio-chemicals known as thiols (a synonym for thiol is mercaptan, or literally, “mercury capturer”). The reason is thought to be genetic. Without these substances, such as the protein glutathione, these genetically variant children suffer from oxidative stress and show a reduced capacity to eliminate heavy metals like mercury. Biomedical intervention with a variety of natural substances was shown to elevate thiol levels in study children to normal levels.

Study: Neurotoxic effects of postnatal thimerosal are mouse strain dependent. Source: Columbia University – Published in Molecular Psychology Summary: Mice with a genetic predisposition to autoimmunity showed horrific reactions to thimerosal containing vaccines compared to mice without the autoimmunity. Sensitive mice showed repetitive and self-injurious behavior, including grooming themselves or their cage mates incessantly, sometimes to the point of death. They also were found to have increased brain size compared to the typical (control) mice exposed to the same vaccine schedule.

Study: Activation of methionine synthase by insulin-like growth

factor-1 and dopamine: a target for neurodevelopmental toxins and thimerosal. Source: Northeastern University – Published in Molecular Psychiatry Summary: Thimerosal, when exposed to cells with certain genetic mutations, can interfere with critical metabolic processes, including something called methylation. Methylation is crucial for proper gene expression, DNA/RNA growth and for the development of neurotransmitters and essential fatty acids – including myelin which protect the nerves and brain. Methylation is also needed for the development of sulfur-based thiols (or “mercury capturers”) such as glutathione, and other detoxification functions.

Study: Environmental mercury release, special education rates, and autism disorder: an ecological study of Texas. Source: University of Texas – Published in Health and Place Summary: Mercury released primarily from coal-fired power plants may be contributing to an increase in the number of cases of autism. The study found that autism increased in Texas counties as mercury emissions rose. For every thousand pounds of environmentally released mercury, there was a 61 percent increase in autism rates. The study looked at Texas county-by-county levels of mercury emissions and compared them to the rates of autism and special education services in 1,200 Texas school districts.

One county with low mercury emissions but significant autism rates was found to harbor the nation’s largest mercury mine. An author of the study said it shows a potentially “important connection between environmental exposure to mercury and the development of autism.”

HEADLINES AND AIRWAVES

Don Imus is the mass media godfather of thimerosal theorists. Imus has interviewed me three times, and Robert F. Kennedy Jr. once. He continues to push the issue to the forefront almost each morning, challenging “wimpy” news anchors to cover the topic, and haranguing top political types for their deafening silence on the issue. Imus even got Newsweek’s Evan Thomas and NBC News’ Brian Williams and Tim Russert all to admit that, yes, this is a topic worthy of national coverage.

Imus also put forth a dare, of sorts, to any opponent of the mercury- autism theory to come forward and debate the subject, live on his show, with RFK, Jr. and/or myself. People from the CDC, FDA, IOM and the American Academy of Pediatrics all declined. But a few days later, Imus got a response: An executive from the Pharmaceutical Research and Manufacturers Association (PhRMA) accepted the challenge. Details are being arranged as of this writing.

In then next few months, Robert Kennedy, Jr. ignited a mass-media bonfire that will smolder for a considerable time in a hard hitting article published in Rolling Stone magazine and on Salon.com. Kennedy also published Op-Ed pieces supporting the theory – and accusations of a government cover up – in the Boston Globe and USA Today.

Kennedy, who in turn appeared on MSNBC’s Scarborough Country in a dazzling segment in which the conservative host told the liberal guest that his own son had Asperger’s Syndrome (a milder form of autism). Scarborough said he blames mercury. Kennedy was also interviewed – some would say ambushed -- on ABC News, while also receiving much kinder treatment on NBC News.

As for myself, I spent my third appearance on Imus discussing why no one was talking about this story (which was all just about to change in a big way). That same week, I also appeared on the Montel Williams Show with Lyn Redwood, the main character in “Evidence of Harm,”

along with theory proponent Rep. Dave Weldon (R-FL) and others. Also that week, Ron Reagan and Monica Crowley invited me onto MSNBC’s “Connected,” along with Dr. Louis Cooper, former head of the AAP.

Meanwhile, Dr. Paul Offit, a leading pediatrician who dismisses the thimerosal theory, refused to appear live with me. Instead, at his request, he was interviewed separately.

The list goes on. USA Today wrote a lengthy and balanced article in early July and the Associated Press did the same, in a story picked up worldwide. The New York Times wrote an article highly critical of the thimerosal theory, and dismissive of parents who support it.

Nonetheless, it garnered added and much needed attention to the controversy. Fox Television local affiliates have covered this story with exceptional dedication, and the Fox News Channel is mulling over a special report.

Meanwhile, The Virginia Conference of the United Methodist Church made news in June by demanding the removal of mercury from vaccines; efforts are afoot to ask the national church to follow suit. Also in June, Generation Rescue purchased full page ads in USA Today and The New York Times promoting the mercury-autism link, and Unlocking Autism placed a series of hardball ads reminding George W. Bush of his 2004 campaign statement that thimerosal should be removed from childhood vaccines. The ads all bearing the tag-line “Giving Mercury to Children on Purpose is Stupid.”

Perhaps most remarkable was a public statement put out by the nation’s three largest private autism research funders: Cure Autism Now, the National Association for Autism Research and the newly formed Autism Speaks, formed by NBC Universal President Bob Wright and his wife Suzanne. Until recently, none of these groups had expressed any extraordinary interest in pursuing the thimerosal- autism theory. On July 1st, the three groups issued a joint statement arguing that autism “may be triggered by environmental factors.”

Mercury, they said, “including the preservative thimerosal, is among the environmental factors currently under scientific investigation.”

The groups vowed publicly to “support and fund research that investigates all theories surrounding potential causes of autism, including whether there is a link between mercury and autism, and we invite researchers to submit proposals in this area.” Bob Wright was one of the three signatories.

CAPITOL HILL IS ABUZZ

In late June, none other than Don Imus extracted an announcement from Senator Chris Dodd that the Connecticut Democrat and his Republican counterpart, Lamar Alexander of Tennessee, were considering thimerosal hearings the sub-committee they head. And he earned a surprising revelation from Senator Rick Santorum (R-PA) that a full- scale investigation of the matter was already underway by Senator Mike Enzi (R-WY), Chairman of the powerful Health, Education, Labor and Pensions (H.E.L.P.) Committee.

Previously, Senator Joe Lieberman (D-CT) stunned the autism community by pledging to take up the debate over mercury and autism, and demand more transparency from government researchers and great compassion for affected families. “I’m going to be a battler for them,” he said of the parents. “I think they’ve have a just cause and, you know, I don’t care how many respected institutions are on the other side.”

Also in June, I spent time in Washington briefing political leaders on the many unanswered questions of this simmering debate. I was traveling at the request of parents of autistic children who, more than anyone, are responsible for keeping this story alive. It was not my first sojourn to the Capital. Several parents, researchers and I also met with Chairman Enzi and his staff, with the staff of Majority Leader Bill Frist and Senator Joe Lieberman. We met Senators Obama and Durbin (D-IL) and briefed their staffs, who are likewise committed to examining these questions. We met with investigators of a leading Senate committee, and with a very high ranking HHS official, who recognized that this story is exploding.

All over Capitol Hill, I met intelligent, compassionate people – Republicans and Democrats – who seem committed to getting the difficult answers that all Americans deserve. I have confidence in their integrity and resolve.

It is my deepest hope that this bipartisan army of congressional investigators – supported by science and goaded by the media, will help determine once and for all if the injection of mercury directly into developing infants was perfectly harmless, or did it trigger horrific reactions in a subset of children with a genetic predisposition to mercury sensitivity? I hope they can determine whether the timing of the autism epidemic with the rise in thimerosal exposure in the 1990s was merely an uncanny coincidence, or true evidence of harm. I hope they will gain access to a federal vaccine database, currently under lock-and-key, that might yield evidence of an association. And I hope they can help us determine, perhaps through congressionally mandated research, whether the removal of mercury from autistic children can produce any clinical benefits or not.

When all of that has moved off the front pages, sometime next year, look out for Evidence of Harm, the paperback, and production of the Hollywood motion picture version. This story is not going away for a long, long time.

Feb 07, 06:38 PM

http://feed.insnews.org/v-cgi/feeds.cgi?feedid=150&story_id=1592328

By MELANIE PHILLIPS

EVER SINCE the MMR controversy burst upon a bemused world back in 1998, the battle lines have been very clearly drawn. In one camp is Andrew Wakefield, the gastroenterologist who started the whole furor when he claimed to have discovered a new syndrome in children combining autistic symptoms with a new type of bowel disease.

Parents of the affected children believed that this was the result of their triple measles, mumps and rubella jabs. Mr. Wakefield took their fears seriously and suggested that, for the sake of prudence, children should be vaccinated with single jabs rather than MMR.

In the uproar that has ensued ever since, virtually the entire medical establishment, headed by the Department of Health, has lined up in the opposite camp to denounce Mr. Wakefield's claims in the most vitriolic terms as 'junk science' with no substance to them whatsoever. MMR, said all these experts with one voice, had been proved to be safe.

As a result, Mr. Wakefield's reputation has been systematically trashed and his research is said to be discredited. Yet many parents remain concerned.

Only about 70 per cent of children are being vaccinated with MMR, raising fears of future epidemics of measles, mumps and rubella. Indeed, as figures published yesterday revealed, in some areas as few as one in ten children has the triple jab.

Yet as the controversy deepened, there was never a chink in the united front the health department presented to the world.

It painted the anti-MMR camp as a bunch of hysterical and grasping parents desperate to blame someone for the inexplicable tragedy that had befallen their children, exploited by a cranky and irresponsible doctor who was putting the health of the nation's children at risk by terrifying parents into avoiding giving them the MMR jab.

At the very core of the department's case was its assertion that all the evidence was on its side. There had been no serious corroboration of Mr. Wakefield's claims and all reputable studies had shown MMR to be safe.

There was simply no scientific case to answer.

Now, however, that united front has been shattered. A former senior government medical officer has broken ranks to say that, on the contrary, the evidence suggests that for a small proportion of children MMR is not safe and that the Government is guilty of 'utterly inexplicable complacency'.

The person saying this cannot easily be dismissed. Dr Peter Fletcher, a former Chief Scientific Officer at the Department of Health in the late 1970s, is a former medical assessor to the Committee on the Safety of Medicines and had responsibility for deciding whether new vaccines were safe.

For years, therefore, he was at the very heart of the vaccine policymaking and regulatory establishment. If anyone knows how to assess all the available evidence on such matters, he surely does.

But now just look at what he has said. Having agreed to be an expert witness for lawyers of the affected children, he had studied thousands of documents relevant to the MMR issue. And these, he found, revealed 'a steady accumulation of evidence' from scientists around the world that the MMR jab was causing brain damage in certain children.

The clinical and scientific data that was now accumulating that MMR could cause brain, gut and immune system damage in a small proportion of vulnerable children was, he said, 'far too much to ignore'.

In other words, Mr. Wakefield's evidence was in the process of being corroborated. What price, then, the health department's insistence that such corroboration didn't exist?

Other assertions by the medical establishment were similarly shredded.

They had tried to explain away the tenfold leap in autism and related brain damage in children over the past 15 years as a statistical illusion arising from improved diagnosis.

But according to Dr Fletcher there was 'no way' this could add up - and it failed to address the additional 'extremely worrying increase' in inflammatory bowel disease and immune disorders among children in this period.

'It is highly likely that at least part of this increase is a vaccine-related problem,' he said, questioning why the Government wasn't taking 'this massive public health problem' more seriously.

Reputations Why indeed? Dr Fletcher himself has suggested the answer: that there are very powerful people who have staked their entire reputations and careers on proving Andrew Wakefield wrong - and they are willing to do almost anything to protect themselves.

This was a remarkable allegation from someone who was himself at the very heart of that particular establishment. But it is clear to anyone who has studied the evidence - as Dr Fletcher has done - that the bland assurances of the Government are simply not supported by the facts that they claim back them up.

While Mr. Wakefield is being subjected to a witch hunt, and while the parents of the affected children are scandalously legal aid to pursue the court case which might well have finally brought to light the truth about MMR, those powerful people in the medical establishment are continuing to misrepresent the evidence.

In particular, they claim that epidemiological studies show the triple vaccine is safe.

But these studies are based on population-wide surveys too large and insensitive to get at the truth.

This is because, for the vast majority of children, the vaccine poses no problem at all. Only a very small proportion are said to have been badly affected, possibly through a combination of environmental or genetic factors.

Population-wide studies are considered unlikely to pick up small numbers like this.

Worse still, the evidence has actually been distorted. Take, for example, the recent study by the respected Cochrane Library, which was said to have proved that Mr. Wakefield was wrong. In fact, far from saying MMR was safe, the study said explicitly that the evidence for its safety was not good enough.

Dr Fletcher himself has previously protested at such misrepresentation.

In 2001, the Government's Chief Medical Officer, Professor Liam Donaldson, said concerns over the safety of MMR were considered by the Committee on the Safety of Medicines and other expert bodies to have been refuted. But, in fact, the CSM had expressly said it was impossible to refute them and that the question was still open.

In a letter to a clinical periodical, Dr Fletcher noted 'the curious turn of events which has now led to the Department of Health, the Medicines Control Agency, the Committee on Safety of Medicines and other eminent bodies citing negative studies as absolute evidence of safety'.

No one listened.

He also said at the time that the MMR safety trials conducted before its introduction in Britain were inadequate.

No one listened.

Instead, the relentless drive to introduce more and more vaccines continues. This week, the Government is reported to be planning to announce yet another jab for babies, this time against pneumococcal meningitis.

Vaccination plays a vital role.

But are we yet sure that we understand the full effects of so many vaccines on immature immune systems?

Now the Chancellor has urged all parents to vaccinate their children with MMR. Yet we still don't know the truth about this vaccine. The pieces of this most complex of scientific jigsaws have not yet fallen into place.

What is clear is that the assertions made by the Government about its proven safety and about the absence of any evidence that might cause concern are simply not true.

Dr Fletcher's intervention is devastating. As he says, if it is proved that MMR can cause autism after all, this will become one of the greatest scandals in medical history.

Are they listening now?

m.phillips@dailymail.co.uk

By SUE CORRIGAN, Mail on Sunday 11:09am 5th February 2006

The Government is also considering flu jabs for under-twos - not to protect the children, but adults they may infect

A former Government medical officer responsible for deciding whether medicines are safe has accused the Government of "utterly inexplicable complacency" over the MMR triple vaccine for children.

Dr Peter Fletcher, who was Chief Scientific Officer at the Department of Health, said if it is proven that the jab causes autism, "the refusal by governments to evaluate the risks properly will make this one of the greatest scandals in medical history".

He added that after agreeing to be an expert witness on drug-safety trials for parents' lawyers, he had received and studied thousands of documents relating to the case which he believed the public had a right to see. rubella jab is causing brain damage in certain children.

But he added: "There are very powerful people in positions of great authority in Britain and elsewhere who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves."

His warning follows reports that the Government is this week planning to announce the addition of a jab against pneumococcal meningitis for babies, probably from next April. It is also considering flu jabs for under-twos - not to protect the children, but adults they may infect.

In the late Seventies, Dr Fletcher served as Chief Scientific Officer at the DoH and Medical Assessor to the Committee on Safety of Medicines, meaning he was responsible for deciding if new vaccines were safe.

He first expressed concerns about MMR in 2001, saying safety trials before the vaccine's introduction in Britain were inadequate.

Now he says the theoretical fears he raised appear to be becoming reality.

He said the rising tide of autism cases and growing scientific understanding of autism-related bowel disease have convinced him the MMR vaccine may be to blame.

"Clinical and scientific data is steadily accumulating that the live measles virus in MMR can cause brain, gut and immune system damage in a subset of vulnerable children," he said. "There's no one conclusive piece of scientific evidence, no 'smoking gun', because there very rarely is when adverse drug reactions are first suspected. When vaccine damage in very young children is involved, it is harder to prove the links.

"But it is the steady accumulation of evidence, from a number of respected universities, teaching hospitals and laboratories around the world, that matters here. There's far too much to ignore. Yet government health authorities are, it seems, more than happy to do so."

'Why isn't the Government taking this massive public health problem more seriously?'

Dr Fletcher said he found "this official complacency utterly inexplicable" in the light of an explosive worldwide increase in regressive autism and inflammatory bowel disease in children, which was first linked to the live measles virus in the MMR jab by clinical researcher Dr Andrew Wakefield in 1998.

"When scientists first raised fears of a possible link between mad cow disease and an apparently new, variant form of CJD they had detected in just 20 or 30 patients, everybody panicked and millions of cows were slaughtered," said Dr Fletcher.

"Yet there has been a tenfold increase in autism and related forms of brain damage over the past 15 years, roughly coinciding with MMR's introduction, and an extremely worrying increase in childhood inflammatory bowel diseases and immune disorders such as diabetes, and no one in authority will even admit it's happening, let alone try to investigate the causes."

He said there was "no way" the tenfold leap in autistic children could be the result of better recognition and definitional changes, as claimed by health authorities.

"It is highly likely that at least part of this increase is a vaccine-related problem." he said. "But whatever it is, why isn't the Government taking this massive public health problem more seriously?"

His outspokenness will infuriate health authorities, who have spent millions of pounds shoring up confidence in MMR since Dr Wakefield's 1998 statement.

But Dr Fletcher said the Government is undermining public confidence in vaccine safety by refusing to do in-depth clinical research to rule out fears of MMR damage to children.

He added that the risks of brain and gut damage from MMR injections seem to be much higher in children where a brother or sister has diabetes, an immune disorder.

"That is a very strong clinical signal that some children are immunologically at risk from MMR," he said. "Why is the Government not investigating it further - diverting some of the millions of pounds spent on advertising and PR campaigns to promote MMR uptake into detailed clinical research instead?"

Now retired after a distinguished 40-year career in science and medicine in Britain, Europe and the US, Dr Fletcher said that without such research, health authorities could not possibly rule out fears about MMR.

He said: "It is entirely possible that the immune systems of a small minority simply cannot cope with the challenge of the three live viruses in the MMR jab, and the ever-increasing vaccine load in general."

He said he had decided to speak out because of his deep concern at the lack of treatment for autistic children with bowel disease, as revealed in The Mail on Sunday two weeks ago.

He called the sudden termination of legal aid to parents of allegedly vaccine-damaged children in late 2003 "a monstrous injustice". After agreeing to be a witness for the parents, he received thousands of documents relating to the case.

"Now, it seems, unless the parents force the Government to restore legal aid, much of this revealing evidence may never come out," he said.

The Department of Health said: "MMR remains the best protection against measles, mumps and rubella. It is recognised by the World Health Organisation as having an outstanding safety record and there is a wealth of evidence showing children who receive the MMR vaccine are no more at risk of autism than those who don't."

http://www.milforddailynews.com/localRegional/view.bg?articleid=85758

By Jon Brodkin / Daily News Staff
Sunday, February 5, 2006

Fears about the toxicity of a mercury-containing preservative in vaccines has caused manufacturers to eliminate the substance from most childhood shots, but the toxic metal is still in many flu and tetanus shots.

    Legislation on Beacon Hill would take mercury out of vaccines for good by banning thimerosal, the mercury-containing preservative.

    "When a woman becomes pregnant, the first thing a doctor says is don’t eat a lot of tuna fish because of the mercury. Yet here we are taking thimerosal. ...putting it into a vaccine and putting it into our children," said Bradford Hill, an Ipswich Republican who sponsored the bill.

    Thimerosal, 50 percent of which is composed of mercury, is used as a preservative in multi-dose vials of vaccines to prevent bacterial contamination. Some researchers and parents of children with autism claim the preservative caused huge increases in autism prevalence.

    Flu shots in single-dose vials do not contain thimerosal, but manufacturers continue to make the mercury-containing multi-dose vials because it is cheaper, requiring less filling and storage capacity.

    State public health authorities argue against banning thimerosal, saying it would disrupt production of flu vaccine, potentially causing many needless deaths.

    "Banning is basically eliminating flu shots," said Dr. Alfred DeMaria, the state Department of Public Health chief medical officer and epidemiologist. "Thousands of people are going to suffer illness and death from influenza for something that’s hypothetical."

    Hill countered that his bill allows the state to use thimerosal-containing vaccines in emergencies.

    Some "thimerosal-free" vaccines do contain trace amounts of thimerosal, but in such low levels that researchers say it causes no danger.

TACA is recruiting members for two new committees -- the Parent Advisory Committee and the TACA Fundraising Committee.

TACA Parent Advisory Committee will meet twice a year to review TACA's mission and programs to ensure we are meeting objectives and the needs of the communities. The committee will evaluate current programs and make recommendations to the Board for new programs. This committee will also be responsible for helping review and process applications for a new program, to be launched later this year, called Families in Crisis.

Committee Qualifications: 1) Must have a family member with autism 2) Be willing to commit the time needed for committee meetings and assigned tasks 3) Have regular attendance at TACA meetings (at least 3 per year) and most importantly, 4) really want to help our children and families!

If you are interested in serving on the Parent Advisory Committee, please contact Lisa Ackerman.

TACA Fundraising Committee will meet four times per year and works to raise the funds that supports TACA's missions. The committee will help develop and evaluate the fundraising plan, support fundraising events, help identify prospects, and assist us in creative ways to secure donations that will enable us to do as much as we possibly can for families dealing with autism in California.

Committee Qualifications: 1) Must be enthusiastic!!! 2) Be willing to commit the time needed for committee meetings and assigned tasks 3) Have regular attendance at TACA meetings (at least 3 per year) and most importantly, 4) really want to help our children and families!

If you are interested in serving on the Fundraising Committee, please contact Violette Prentice – First Fundraising Committee meeting on March 1, 2006 at 6:30 pm in Newport Beach. Please see Elizabeth to register and obtain directions.

We want to hear from our members as to how we can better serve them. Please let us know if you are interested! Thank you!

In order to provide the seven TACA meeting locations with topics our members want to hear more about, we do annual surveys of interest.

We would like to hear from you. If you would like to participate in this survey you can in 2 ways:

• at TACA meeting locations, you can pick up a survey form
• Email us for your own survey form to fill out and mail back to TACA.

Thanks for helping us provide relevant and important meeting topics for our members!

McDonalds French Fries STATUS:

It appears McDonalds has reevaluated their other ingredients as well as trans fat ...

French Fries:
Potatoes, partially hydrogenated soybean oil, natural flavor (beef, wheat and dairy sources), dextrose, sodium acid pyrophosphate (to preserve natural color). Breading set in vegetable oil. Cooked in partially hydrogenated vegetable oils (may contain partially hydrogenated soybean oil and/or partially hydrogenated corn oil and/or partially hydrogenated canola oil and/or cottonseed oil and/or sunflower oil and/or corn oil). Contains wheat and milk ingredients.

Note: Some families have called McDonalds to complain and they have stated they have only changed the ingredients list due to new FDA requirements. Then why are these ingredients listed if they are not in the product? It is important families know the ingredient list – maybe try In-N-Out French fries as alternative.

FRANK’S LO CARB MARKET – has re-opened as LOS ALAMITOS NUTRITION

I'm very excited to let you know I've reopened the store at a new location. We are located in Los Alamitos on the border of Seal Beach. This store carries many of the gluten free, casein free items our kids need.

Store info:
Los Alamitos Nutrition
4292 Katella Ave.
Los Alamitos Ca 90720
(562)493-4105

BOOK:
Could It Be Autism? A Parent's Guide to the First Signs and Next Steps, released by Broadway Books/Random House.  Could It Be Autism? can be purchased at your local bookstore or online at Amazon.com or other online bookstores.

Nancy D. Wiseman
Founder and President
First Signs, Inc.
Dedicated to early identification and intervention
of children with autism and other developmental disorders
Phone: (978) 346-4380
Fax: (978) 346-4638
Email: nwiseman@firstsigns.org
www.firstsigns.org 

Web Link:
Reverend Lisa Sykes discusses her autism activism and her son's treatment with the Geiers' revolutionary new "Lupron" protocol.
http://www.autismmedia.org/media10.html

FAIR Autism Media has just posted a new interview with the Reverend Lisa Sykes, a mother of a recovering autistic boy (Wesley) and an ordained minister, currently serving as Pastor for the Christ United Methodist Church in Richmond, Virginia. In this interview, Rev. Sykes discusses her introduction to autism, becoming an activist and how she came to having her son treated using the Geiers' "Lupron" protocol to more effectively remove heavy metals by first lowering Wesley's abnormally high testosterone levels.

Autism Awareness Night Sunday, March 12, 2006
5PM @ The Arrowhead Pond- Anaheim Mighty Ducks vs. Phoenix Coyotes

Come help the Mighty Ducks raise awareness about autism and raise funds for research into treatments and a cure. There are special ticket prices in three sections. A portion of the proceeds from all tickets purchased through

the phone number and form below, and the silent auction on the concourse that evening, will benefit the fight against autism.

Contact Sam Levitt with Cure Autism Now at (323) 549-0500, ext. 747 for more information.

Tickets are limited, so buy yours today!!!

Partner Organizations:

To order these special tickets over the phone, contact Kadi Sutherlin in the Ducks Ticket Office at (714) 940-2855.
You can also fill out the form below and return it to the Ducks to get your tickets.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Name:___________________________Address:_____________________

City: __________________________________Zip Code:_______________

Phone:__________________________Email Address:_________________

Method of Payment: £ Check (payable to: the Mighty Ducks) £ Visa £ MasterCard £ AMX

Card #:___________________________________ Expiration Date:___________

Please return this portion of order form WITH PAYMENT to:
Mighty Ducks, Attn: Kadi Sutherlin, 2695 E. Katella Ave., Anaheim, CA 92806

Occasionally, I take a large look back at Jeff’s journey. This is akin to a long hard look at a problem that has pain or too much history to re-open a chapter. This personal note is just another retrospective on the journey called autism.

Six years ago, Jeff turned from a toddler to a child with autism. How could so much change with just a piece of paper? His body had numerous biomedical issues explained away by his diagnosis and a voice that only gave me crying, screaming and occasional laughter. His skill set and development path had many test markers at 0% - 2% of what was age-appropriate and every day it seemed he lost another milestone or acquired skill.

Early on, specialists diagnosed Jeff with moderate to severe autism and mentally retarded with the inability to make meaningful progress. Thankfully, some of their findings were dead wrong. And unfortunately, some of their reports were dead right with significant challenges ahead for such a young boy who had a promising future at birth and a typical development path until 15 months. The repeated analogy of someone kidnapping your child’s mind and soul but leaving the body behind felt like a cold reality in our home. Unfortunately, there are many families who can share the same story.

Those dark early years -- with little sleep, challenging poops that left him in pain and uncomfortable, unexplainable rashes and foreign behaviors keeping him in his world and out of ours -- that we stayed sheltered in our home were something I would wish on nobody. Looking back, I think the hardest part was Jeff struggling to communicate and not being able to find the words. This precious boy at one time who did not have all these challenges. Why him? Why now?

Today, Jeff still qualifies for his autism, apraxia and auditory processing diagnoses as they all contribute to his issues at hand. Undeniably, anyone who has seen Jeff, worked with him or knows him can attest to his amazing progress from a non-verbal, self-stimulatory boy to the astounding child he is today. He can talk, we can converse (at a basic level) and he can attend a typical second grade class with an aide to hold his own academically. He is a marvel, a joy, and a miracle. Most of my days, I can look at him and smile and enjoy his progress and gifts to our family. Unfortunately, there are some days when I want to wallow in areas where he struggles and fret for his future.

For our son, issues remain and require attention and focus. Even all the while of countless therapist and specialist hours spent, Jeff works harder than anyone else I know just to maintain his ability to live in a non-autistic world. I just love this boy who is trying so hard. He has more drive and determination than anyone else I have ever seen.

Looking at his areas of need are like looking at an open wound – sometimes it is painful. But looking at his areas of need allows me to continue to focus on his growth. His areas of need still include:

• Speech: his pragmatic communication has greatly improved over the last year. At times, strangers holding conversations with him and his mom in the grocery store would notice something was not quite right, but experience a beautiful, happy, delightful boy in a basic conversation that once could not happen. These strangers will never know how far he has come. And there are times when we live with a caveman with single word requests at the end of a long day such as “cookie,” “computer” or another request. And even Jeff can laugh when I say, “Hello, caveman!” and make an attempt to grab my face, smile and provide more language behind his request. Even after thousands of hours of therapy, he remains significantly speech delayed. I can only pray his progress continues and that his girlfriend and hopeful eventual wife are understanding that a man of little words does not mean that he is not available and does not love them.
  
• Auditory processing: when in a crowded restaurant with background noise or attending his second grade class, Jeff’s ability to process the multiple stimuli around him is a major challenge. While in the classroom, he requires an auditory trainer to hear and respond to his teacher and aide. The data we collect demonstrates without the electronic device he attends less and requires more one-on-one instruction. Like with his other challenges, I have no idea if Jeff’s processing issues are permanent or something that will continue to improve. I just have to calculate this in his area of need when addressing his living and learning environments.
  
• Abstract concepts & new curriculum: teaching abstract thinking and learning is something that requires patience and observation because Jeff has issues here as well and is a completely different issue than his typical sister. The issues abound with addressing areas of social nature (beyond happy or sad) and complex curriculum with the idea of making the child think “outside the box.” Jeff still needs help pre-loading abstract second grade curriculum and preparing him for standardized testing. Once he has these new areas, he does not lose them and uses each acquired task as a new stepping stone to learning more. I marvel at his ability to write stories, complete worksheets that require me to think, and answer questions in his class like his peers. Truly, progress has been made here as well with new challenges around the corner, undefined and requiring his team to knock them down.
  
• Socializing: the entire world has a social component with unspoken rules and complexity I am still trying to master (without a diagnosis, thank you very much!) When a child who lost three years of important early development and just starts talking, the social world is a significant area to play catch-up. Thankfully, through therapies Jeff has acquired observational learning skills, but social graces and the motivation to participate in an abstract world can be difficult. I love that his friends at ages 7 and 8 have patience and desire to know him and play with him and occasionally provide him assistance. I fret over the patience and insensitivity level of teens and adults coming ahead in his future. Jeff has a wonderful personality, a pretty constant smile and a huge desire to please (thanks to ABA) that I pray every day that nothing takes those beautiful qualities away. They are gifts in life that will help him along the way. As in the other areas of need, this area is a huge improvement from ignoring peers, playing in a corner, and shunning parallel play to asking friends to play, sustaining activities and dealing with situations appropriately; this still remains a significant delay.
  
• The unknown: the dreaded unforeseen issue that could be biomedically in nature or just another issue to address. Sometimes those “what if’s” games can occupy way too much of your valuable time and psyche.

The struggles for Jeff to make progress have left some bloody carcasses called “relationships” on the side of the road. While I would give up more if I had to for my kids I am not proud of these events and people left behind, family members who think I have gone “over the edge,” a daughter who lost out on a mom in her teens to a new distraction, and a husband I cannot believe still loves me and has not killed me in my sleep.

Some of these hurdles and events are repairable and some are not. While I realize life has challenges and speed bumps that develop and shape our character, I am not sure how much more character I really needed but got in this journey. I am not sure if there was a lesson that needed to learned or God shaking me to show me what was important and what was not. I can only guess that this experience has shaped me to be a better person and hopefully more caring to the people that mean the most to me with some regrets in the wake.

While I realize this journey is not about me, I can only relate to it from my viewpoint or when I pay attention to what is happening to my family and to Jeff. I would give anything to live in his body for a day only to come back to my body to explain to the world how he feels so I could help him and the thousands of other children in his similar shoes.

I am sure I am not the only one making silent deals with God in the wee hours of the morning. I am sure there are thousands of voices making the same deals with their higher authority – please save my child.

Writing this particular personal note appearing in the TACA eNews is a bit cathartic and does light a fire for me to continue to be Jeff’s strongest advocate and cheerleader. Sometimes writing the personal note after a setback or watching him struggle and have extremely hard days is heartbreaking and often too much to bear. I can hardly breathe and focus on anything else on those hard days. Often I just pray for a peaceful night’s sleep instead of a night of torture of a brain that won’t stop looking for answers and for Jeff to have a better day tomorrow. I would give anything for Jeff to be given his abilities back and for whatever happened to him to leave his body as quickly as it came.

Thankfully, the journey with other TACA families has made this process easier. We have learned together and sadly cried together, too. If at any time I feel a bit too confident or things are going my way, the phone will ring and I will be immediately brought back to a newly diagnosed family and their myriad of feelings clouding their eyes. The pain of that era is never too far away. Today, Autism still hits too many children. I often think What about the families that don’t have any support? How do they function? I shudder to think about them and their children without any help. The help from other families has gotten us to where we are today and I am grateful to the families that came before me and professionals who cared for us.

For many of us, if it was just autism or our child was diagnosed with something at birth perhaps we could be more accepting. What makes it so hard for me is finally reviewing video taken of Jeff and knowing that his progress and early milestones were not a figment of my imagination but a reality. He was clearly and undeniably robbed. His medical issues we still address today have to be painful and extremely uncomfortable at times and yet he smiles and wants to work so hard. I shudder to think if we took the advice of early doctors and did not address Jeff’s needs both in a traditional therapy and biomedical perspective and am thankful that my husband and I had the same goal - to prove them wrong.

Before I get some hate mail from functioning adults with autism, it is important to note that it is not my goal of beating the autism out of Jeff but helping him be the best he can be. As a parent, that is my job I accepted at his birth -- to help Jeff have the ability to make choices and life decisions that are important to him, and to have the life he was given at birth and function without any help in health and happiness. I wish that for every human being.

While I know there are guarantees in life for anyone, including families affected by autism, there are days I am so afraid I cannot think about anything else. Then I alternate with days filled with joy that Jeff will beat this disease. I know I am most likely not alone with these thoughts and at times struggle with keeping it all in perspective. Sometime it is comforting to just hear other peoples’ thoughts that I am feeling at that same moment but don’t utter those words.

My only hope for both my children is that when I am gone that they don’t need me or my husband anymore…that they find love, function as taxpayers and have a meaningful life of joy and challenges a little less than mine or in their early beginnings. Hopefully when I am gone that they think of me fondly and don’t require thousands of hours of psycho-analysis with a Freudian coach, and just hopefully autism is less of an issue than when it arrived. I pray to God these same gifts for the families affected that they go through the gauntlet and come out the other side for their kids sake. Thanks for reading.

Hugs, thanks, and BE SAFE
Lisa A Jeff's mom

And Editor: Kim Palmer (thanks Kim!)

Web Page for TACA Group: www.tacanow.com
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