Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for February 2004 - #1. As always, email your thoughts and/or questions.
I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.
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IF this email is NEW to you and you don't recognize the name...
WELCOME! These emails happen two to four times a month for the
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA has an official web site at www.tacanow.com
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In this edition of TACA e-news:
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1) Next TACA COSTA
Date: Saturday, February 14th (always the 2nd Saturday of each month)
Time:
TOPIC: An Insider’s View on Autism – What does the DSM-IV criteria for autism mean? Important information for parents and friends of autistic children.
Attorney and mother of four, Dana, like her seven-year-old son, is autistic. She will share her unique insider view on autism. An active, devoted mother, Dana offers her views on autism, including building on her strengths, her philosophical perspective on autism, and how she helps her children.
We are excited to have Dana take the time to be with us at our group! I HIGHLY RECOMMEND THIS PRESENTATION FOR PARENTS, FAMILIY & FRIENDS !
PLACE:
(I am happy to report the church is back! With the new time, consider it
our new home!!)
(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.)
Directions:
405 FWY
South, Exit
Right on
Left on Baker
Go under FREEWAY.
The
And remember, we are still a non-faith based group!
CONTACT PHONE FOR DAYS OF THE MEETING ONLY: 949.678.9010
Please do NOT use the cell contact for days outside of the meetings. Thank you!
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2) UPCOMING TACA
All meetings at the Vineyard:
By Kathy Ward
Much more is being planned for 2004! Stay tuned!
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TACA has FIVE So.
1)
2) Mission Hills (the Valley, man!): NEW the 1st Sunday of every month,
3)
February 24: Amy Langerman, Attorney - "Special Ed Law"
March 23: Sharon Lerner, Ph.D. " The Philosophy of Inclusion: What Parents Should Look For
When Choosing a Recreational Site For Their ASD Child."
4)
NO MEETING IN FEBRUARY
March 20: Dr.
Kenneth Williams (DAN! Doctor)
and: Carolyn Doherty – Rapid Prompting Method /
5)
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3) General News:
|
A. Toxins Linked to Autism, ADHD |
http://story.news.yahoo.com/news?tmpl=story&u=/hsn/20040205/hl_hsn/toxinslinkedtoautismadhd
THURSDAY, Feb. 5 (HealthDayNews) -- Exposure to certain neurodevelopmental toxins, including the vaccine additive thimerosal, may increase the risk of autism and attention-deficit hyperactivity disorder, says a study in the April issue of Molecular Psychiatry.
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|
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This research is the first to offer a possible explanation for possible causes of these two increasingly common childhood disorders.
The researchers found that exposure to toxins such as ethanol and heavy metals (including lead, aluminum and the ethyl mercury-containing preservative thimerosal) interrupt growth factor signaling. This adversely impacts methylation reactions such as the transfer of carbon atoms. Methylation is critical to proper neurological development in infants and children.
"Scientists certainly acknowledge that exposure to
neurotoxins like ethanol and heavy metals can cause developmental disorders
but, until now, the precise mechanisms underlying their toxicity have not been
known," researcher and pharmacy professor Richard Deth of
"The recent increase in the incidence of autism led us to speculate that environmental exposures, including vaccine additives, might contribute to the triggering of this disorder," Deth says.
Starting in 2000, the
Now, most vaccines in the
(Editors note: Anyone want to yell with me “It’s about time!!”???
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B. As Autism Cases Rise, Parents Run Frenzied Race to Get Help
By JANE GROSS - http://www.nytimes.com/2004/01/30/nyregion/30AUTI.html
But a fence costs more than
the Lombardis can afford since they moved to this
It was desperation that
brought the family here from
"I can't fix him, so
my only peace of mind is to get him the best services I can," Mrs.
Lombardi said, echoing mothers from
The mismatch between needs and services is widening, experts say, despite many start-up programs for autistic children. But new schools and additional classrooms have not kept pace with skyrocketing caseloads and growing sophistication among parents about what sort of educational techniques work.
Education — highly structured, virtually one-on-one and thus astronomically expensive — is the one proven treatment for autism, experts say. But it is no guarantee. Examples of exceptional success — and a narrow window of opportunity — have frantic parents trolling the Internet, visiting any school that sounds promising, winding up on waiting lists and often moving or suing their school district to get what they want.
Dr. Catherine Lord, primary author of a 2001 federal report on teaching techniques for autism, estimated at the time that only 10 percent of affected children had access to the proven labor-intensive pedagogy, which can cost a school district as much as $60,000 a year per child. Dr. Lord says there are many indications that the situation is worse today, when schools nationwide are dealing with 120,000 autistic students, up from 20,000 a decade ago.
Some private schools that
accommodate a mere 25 children have waiting lists with hundreds of names on
them. The best public school programs are besieged. There are not enough
certified behavioral therapists, so promising aides are trained in the
classroom and then fought over, like prized nannies, by parents seeking
after-school and weekend help. Dr. Fred R. Volkmar, an autism researcher and
diagnostician at
A few states — notably
North Carolina and Delaware — provide coordinated, seamless services from
preschool until the age of 21. But more common is an incomprehensible jumble
that parents must decode amid the fog of learning their child's grim prognosis.
It took three years for
Mrs. Lombardi to find
Eventually, Mrs. Lombardi decided that Ardsley had the best programs around, so good that districts from New York City to Rye Neck pay tens of thousands of dollars a year to place severely autistic children here. Joey would have his own aide to help him sit still, a classroom partitioned into quiet learning spaces with 10 adults supervising 11 children, private speech therapy four times a week and exposure to ordinary kindergartners at lunch and recess.
But to make it work, Joey's father, Nicholas, is working 15-hour days as a ticket broker and Mrs. Lombardi has had to take a part-time job as a receptionist. In addition to the costs of living here, there is Joey's out-of-school therapy, which sustains his fragile progress and can cost a family $20,000 to $40,000 a year.
Some school systems are scurrying to catch up with Ardsley. But parents resist being part of a pilot program. Dr. Lord understands their reluctance, yet she believes that these start-ups, serving two or three autistic children at first, are essential to an eventual expansion of services.
Mrs. Lombardi was impressed by the charismatic teacher in the one autism classroom in Pearl River's elementary school, in Rockland County, where the family had its home and where Joey had attended an excellent preschool program. But the situation was "too fragile for my liking," Mrs. Lombardi said. "What if the teacher broke her leg, or took a maternity leave?"
In Westchester, tiny programs were starting in Ossining, which would have been more affordable, and Briarcliff, where her sister-in-law lives. "But once I heard `new' that was it," Mrs. Lombardi said. "I can't waste time for my kid while they're learning."
Moving to a district with a long-standing program is a popular strategy for families like the Lombardis, creating what seem like autism clusters in places like Ardsley; Guilford, Conn.; and Naperville, Ill. Placement in a district where a family does not live, or in a private school, requires the home district to agree that its educational programs are not "appropriate" as mandated by federal law. In that case, a district must pay for the disabled child's education elsewhere.
If the home district insists that it has adequate programs, well-to-do families often threaten to sue. Generally they get what they want, without going to court, because the district cannot afford legal fees or lost working hours for professionals who would have to testify.
New York City has few private schools for autistic children once they are 5 years old, and several efforts to start them have foundered because of real estate costs. The public school system serves 3,000 autistic students, adding additional classrooms as the need arises. Some of its programs are highly regarded by special education experts statewide and prompt families to move from one borough to another. But some upper-middle-class New Yorkers, especially those whose non-disabled children are in private school, fear that the programs are not good enough.
Ilene Lainer, for instance, never looked at a public school for her autistic son Ari, now 7. Instead, she set up a home program for him, which was supposed to be supervised by an agency under contract to the city. Nobody ever came to observe the parade of therapists working with Ari, Ms. Lainer said, so she hired a home supervisor from the private Alpine School in Paramus, N.J. When the city refused to pay Alpine's fee, Ms. Lainer threatened a lawsuit and prevailed at a hearing before an administrative law judge.
Meanwhile, she searched for a private school in New Jersey. One asked for a video of her son for diagnostic purposes and never acknowledged its delivery. Another never called her back about an interview, despite weekly phone messages. "You have no idea how cruel these people can be," said Ms. Lainer, who practiced law until her son's diagnosis.
Ari was eventually accepted at a New Jersey private school. Ms. Lainer, despite one legal victory, doubted that New York City would pay for her son's education in another state and so she began house hunting across the river in districts she was told were most likely to agree to pay for private school.
But, she simultaneously retained a lawyer for a second hearing with the city. To Ms. Lainer's surprise, the city settled and reimbursed the $58,000 in annual tuition she had already paid. For now, she is driving Ari to Bergen County every day and is a founding member of an advocacy organization exploring ways to open comparable schools in Manhattan.
In the suburbs, parents also hire lawyers to get extra services or an out-of-district placement. Here, too, special education committees generally give in. Some of the guest students in Ardsley came with the full support of their home districts and others because the parents threatened a legal battle.
Mrs. Lombardi is not inclined to fight. And she wonders what happens to parents who do, and then must face their antagonists for the annual review and revision of a child's Individual Educational Plan, which is essentially a contract for services. In Joey's case, this means deciding each year if his one-on-one aide is still necessary or if four sessions of private speech therapy a week can replace five.
Mrs. Lombardi wishes Concord Road had speech therapists trained in a particular method that has helped Joey elsewhere. She has written letters to the Board of Education and put it on the agenda of the special education committee of the P.T.A. But she accepts that the training is too expensive. "Every parent thinks more is better," Mrs. Lombardi said.
Mrs. Lombardi's persuasion depends on food, not fisticuffs. She puts boxes of candy in Joey's backpack with a note to his teacher saying "Happy Monday." She bakes corn muffins for the bus driver, who encourages the boy to imitate his chirpy "Good morning!"
When things are particularly difficult, like when Joey had problems with toilet-training or tried a weighted vest to calm his frequent thrashing, Mrs. Lombardi turns to chocolate. "I go with my brownies," she said. "And if they see frosting, it's `Oh, Mrs. Lombardi, what can we do for you?' "
Copyright 2004 The New York Times Company
C. Disney theme parks want able-bodied
back in line
But special pass is harder for disabled, too.
By MICHELE
HIMMELBERG - The Orange County Register
ANAHEIM – The front of the line just got a lot less crowded at the Disneyland
Resort.
And some people are fuming.
After years of freely issuing passes to people who said they couldn't stand in
the regular lines because of an ailment or disability, Disney is asking a lot
more questions now before allowing anyone to
head to the front of the line.
The change, intended to limit the service to those who need it and stop
bottlenecks at boarding areas, has satisfied some and enraged others.
"The fact that they're making it harder to get help only means that the
people it was designed for in the first place are going to use it," said
John Kennerknecht of Fontana, whose son has cerebral palsy. "Honestly, I'd
rather stand in a two-hour line with a totally healthy son, but it's irritating
when you see people abusing the system."
But people with disabilities that aren't visibly apparent say the guidelines
seem so vague that they may quit visiting Disney parks.
Angela Valles of Garden Grove can't stand for long periods because of multiple
sclerosis. She said Disney officials insisted she use a wheelchair, but Valles
didn't want to spend an extra $7 for something
she would hardly use.
"I want my (annual) pass refunded if they're not going to change the
system," said Valles, who bought a pass last month. "They've
completely ignored my class of disability. I went Sunday night, and it sucked
all the fun out of it."
So many visitors used the "special assistance passes" for so long
that a sense of entitlement developed, and several angry scenes erupted when
Disney began refusing requests for them in late December. Even Kennerknecht
said he had to appeal after first being denied a pass for his son, 5, who uses
a stroller-type wheelchair to get around.
The new system officially rolls out in March. Meanwhile, Disney is directing
visitors with special needs to waiting areas, which gives them access to the
ride but not necessarily expedited boarding. Under the old system, anyone with
a pass or in a wheelchair could go to the front of the line with up to six
people and quickly board an attraction.
"We want to provide a magical experience for all of our guests,"
Disney spokeswoman Sondra Haley said. "We work to accommodate their needs
in a variety of ways, including those with special needs."
The system could face more resistance as it closes the door on years of abuse.
Gone are the days when groups of teenagers would flip a coin to see who would
rent a wheelchair that day - and then use the chair to get a pass to the front
of every line for a group of six.
Gone are the days when a person could say "I have a bad back" or
"I have a handicapped parking placard" and receive a pass that allowed
them to go through the exit line to quickly board a ride.
The system - intended to accommodate legitimate disabilities – became so abused
that special-assistance lines sometimes became 30 or 40 minutes long. As those
lines converged with the regular line and the fast-pass line, bottle necks
backed up the boarding system and visitors from all three lines complained.
Disney acknowledges that the old program was too lenient, creating days when up
to 20 percent of visitors had special passes. But even now it will not issue a
written policy, because that could open loopholes that again might be
exploited. Also, Disney views it as an optional service, something that goes
beyond its obligation under the Americans with Disabilities Act.
Disney officials pointed out that the ADA requires them to provide equal
access, but not "superior access." They still will assist people with
special needs, but Disney will "tailor solutions" on a case-by-case
basis for anyone not in a wheelchair, officials said. Instead of issuing one
pass that fits all - from a broken arm to mental retardation - new cards with
up to eight stamps will offer various levels of assistance. The "guest
assistance card" will be similar to the one used at Walt Disney World in
Florida.
"They have a challenge," said Crystal Fernando of San Marcos. She
said her autistic son might begin screaming or pinching people in a crowded
line because claustrophobic conditions can trigger anxiety. She's reluctant to
drive to Anaheim "on the 50-50 chance that we might be refused the
opportunity of our son having a magical experience."
Disney consulted with several disability advocacy groups for guidance on the
new system. Disney also consulted the Department of Justice, and attorneys
advised the resort to stop accepting documentation of a disability. Instead of
addressing the disability, Disney officials want to focus on the person's needs
at the parks.
Representatives of the Dayle McIntosh Center in Anaheim, a nonprofit group that
advocates for people with disabilities, praised Disney's new system. The center
also provides services without asking for proof of disability.
"I'm sure there will be some hiccups until they get it just right,"
said Rebekah McIlhenny, the center's community-relations director. "But
(without limitations) it would be like passing out a handicapped sticker to
anyone who says they are disabled. The abuse would be extreme."
Other theme parks offer a variety of assistance, with most providing special
boarding to visitors in wheelchairs. Knott's Berry Farm, which does accept
documentation, allows people in wheelchairs to wait at the front while their
party goes through the line.
Disney plans extensive training for employees who will issue guest- assistance
cards, officials said. Those employees will be instructed to suggest use of the
fast-pass system to reserve boarding times for those who can't stand for long
periods.
Critics said the program will work only if the training works. Fernando said
she and her autistic son have had no problems getting assistance at other
parks, such as Legoland and the San Diego Zoo. Disney "needs to have
people with more knowledge of what the disabilities are and not look down their
nose at a child and say, 'You don't look disabled to me,' " she said.
Sulynn Means of Orange has similar concerns and advised others to show their
equipment to Disney employees when explaining their special needs. Her visually
impaired daughter uses a long white cane as a guide.
Means said she asked for a pass three different times before a Disney employee
recognized that the cane presented safety issues if her daughter used it in the
regular lines.
"I didn't just want a shorter line," Sulynn said. "My concerns
were that somebody might get hurt.
"But I saw the old policy being abused, too, and it drove me nuts. If your
policy is not to ask anything, then anybody can get one, and that makes it bad
for those who really need it."
SPECIAL ASSISTANCE
Most theme parks provide some kind of assistance for visitors with
disabilities. See their Web sites for general guidelines under guest services,
or call ahead and ask for pamphlets that describe the accommodations. Here are
some services offered at the Disneyland Resort.
Visual disabilities: Braille guides.
Hearing disabilities: Audiotape tours, listening systems, reflective and video captioning.
Service animals: Welcome in most locations, but not all attractions; must be on leash or harness.
Mobility disabilities: Limited number of wheelchairs and electric vehicles available for rent on first-come, first-served basis; some attractions require guest to transfer from chair to ride system.
Discount passes: Disneyland Resort Community Involvement Program partners with California agencies and organizations that provide services to people with permanent physical disabilities. Through these eligible organizations, guests can order a one-day, one-park ticket for $19. To learn more: Call (714) 781-4000 or go to www.disneyland.com and click on "resort guest services."
4) VACCINE NEWS !
http://www.2theadvocate.com/stories/020104/new_autson001.shtml
Family suing to aid autistic son
By PENNY BROWN
ROBERTS
Advocate staff writer
Timothy Wells begins this day as he does every other -- eyes to the sky,
shouting, "Sun come up! Sun come up!"
The 9-year-old Baton Rouge boy's world is filled with requisite ritual. Words and phrases are repeated over and over again. Unfamiliar aisles at Wal-Mart are traumatic. Unexpected noises elicit screaming. And the sun absolutely must come up on time.
It's the way of life that comes with being autistic, and Timothy was diagnosed with the disorder at the age of 3.
Over the years, Richard and Lisa Wells have worked three jobs between them, mortgaged their Bramble Drive home twice and sold possessions to help their son.
Now they're trying another approach: taking the nation's largest pharmaceutical companies to court.
The Wells are among seven Baton Rouge area families and dozens more throughout south Louisiana with autistic children who are suing companies that manufactured and marketed childhood vaccines containing the mercury-based preservative thimerosal.
The cases, filed about a year ago, could very well be the first of their kind in the nation to make it to trial in federal court.
It won't be the first time Eli Lilly and Co., Wyeth Inc., Aventis Pasteur, Merck & Co. and SmithKline Beecham have been to court because of childhood vaccines.
In 1988, Congress established a National Vaccine Injury Compensation Program and a Vaccine Court in which all such claims first must be tried. Claims are subject to a three-year statute of limitations and a $250,000 cap for non-economic damages.
The Wells and other families are trying the equivalent of a legal end-run around the special court. Rather than the child suing for an alleged injury, the parents are claiming "loss of consortium" -- the normal relationship they'll never have with the injured child. They also are taking the approach that thimerosal was an additive, not an actual vaccine, and therefore not covered by the Vaccine Court.
Even so, the parents will have to prove a connection between thimerosal and autism exists -- a theory the U.S. Centers for Disease Control and Prevention, the National Institutes of Health, the Food and Drug Administration and several independent medical organizations say has never been proven.
U.S. District Judge James Brady in Baton Rouge twice has refused to throw out the cases, writing that they are "importantly different" from previous litigation.
Attorneys for both sides already have ruled out settlement conferences and alternative dispute resolution. No trial date has been set.
Mystery ailment
"Bus coming! Bus coming! Bus coming!"
There are still 30 minutes until the yellow-and-black vehicle pulls up in front of his house to take him on the hour-long ride to Westminster Elementary School, but Timothy is certain something is amiss.
He has already run through his roster of rituals. He's already gotten dressed. Eaten his instant grits. Pleaded with the sun to rise. Taken his medicine. Endured his mother brushing his teeth. Walked a bicycle up and down the street. Reminded his father to empty the trash compactor. And watched the Rev. Larry Stockstill's morning message on TV.
"Bus coming!" he says, nearly in tears. He grabs his father's hand and leads him outside to the curb.
"Tim," Richard says, stroking the boy's ginger hair. "You still have another 30 minutes. Seven o'clock."
"Seven o'clock! Seven o'clock!" Timothy says, looking frantically down the street. "Bus coming!"
Even on mornings like these, Lisa hasn't forgotten how badly she and Richard -- both Baton Rouge natives -- wanted their first child. It took them 51/2 years to have Timothy.
He was born healthy, his parents said, weighing in at 10 pounds, 12 ounces. He seemed to develop normally, eventually calling the couple "momma" and "daddy," smiling, giggling and playing.
But when Timothy was 18 months old, Lisa and Richard said, they began to notice he no longer made eye contact. He had fits of screaming and crying. He became a picky eater and refused utensils. He stopped talking and started humming.
"It was like he just entered his own little world," Lisa said. "We had no idea what happened."
Although Richard's mother told the couple she thought Timothy might have autism, the Wells had him tested for everything from deafness to allergies. At the age of 3, their son was diagnosed as moderately autistic.
The next four years were, according to Lisa, "a blur." The couple would wake up in the middle of the night to comfort him during screaming fits -- one so violent that Timothy put his head through a sheetrock wall. They got rid of the television set because the noise bothered him. And they began to realize their marriage was strained.
But when Timothy became aggressive at times toward his two younger sisters -- Hannah, now 7, and Sarah, 6 -- Richard and Lisa made a decision.
They sent him to St. Mary's Residential Training Facility, a live-in school for the developmentally disabled in Alexandria. Every weekend, the family traveled to Alexandria and slept in a camper at Indian Creek Recreational Area while visiting Timothy.
It took 10 days, but the school potty-trained their son. Through therapy and education, Timothy learned to care for himself -- like putting on his own clothes and eating with utensils again.
"It was like walking away from him," Richard said. "We'd go in there and look at his empty bed and we'd cry. We just missed him. But it saved our marriage, our family and our nervous system. Lisa and I got to be husband and wife instead of caretakers for 24 hours a day."
After two years, the Wells were ready to bring Timothy home, where he's been ever since.
"The affection we missed out on with this baby -- it's like a big hole in our hearts," Lisa said. "It's like somebody came into our house and stole our child's personality overnight. That's what autism is. That's what it feels like. It's like, where did he go?"
The bus arrives, and Timothy ambles up the steps and takes his seat -- always the same one, three rows back next to the window. The sun has come up. But if Timothy has noticed, he says nothing.
No numbers
No one knows how many children have autism.
Various government entities and other organizations conservatively estimate the incidence to be anywhere between one in 250 to one in 1,000 children in the United States. The Louisiana Department of Health and Hospitals does not statistically track autism cases, spokeswoman Kristen Meyer said.
Autism refers not to a specific ailment but to a collection of neurological disorders. Those with the condition generally experience impaired social interaction and communication skills, and show a tendency toward repetitive behaviors or interests. Some are able to live independently; others require constant care.
Boys are three to four times more likely to have autism than girls, the CDC contends, but the condition occurs in all racial, ethnic and social groups.
Although autism cannot be cured, the federal agency notes, its symptoms can be treated with medication and therapy.
Its cause, however, has proven elusive. The NIH is exploring a variety of theories, including the possibility that it may be caused by a viral infection, environmental triggers, genetic predisposition or a combination of factors.
One theory is that childhood vaccines are to blame.
Estimated autism rates have tripled during the past two decades, according to the Autism Society of America. During that same period, the suggested childhood immunizations did, too. That, those who point to vaccines as the culprit contend, may have increased the amount of mercury to which children were exposed.
Until a few years ago, vaccines against such diseases as influenza, hepatitis, tetanus and diphtheria often contained thimerosal -- a mercury-based preservative. At one point, infants as young as six months were being injected with up to 187.5 micrograms of mercury, according to the U.S. Centers for Disease Control. Today, the approved level is less than 3 micrograms. There are one million micrograms in a gram.
Thimerosal was developed by University of Maryland researcher Morris Kharasch in 1927. Eli Lilly purchased the patent. In 1930, Dr. K.C. Smithburn conducted a study at Lilly Laboratories for Clinical Research in which he injected people dying of meningitis with Merthiolate, the trade name for thimerosal.
Those who are suing the company contend the study did not disclose that some of the test subjects began dying of a severe neurological disease and that at least one had a severe toxic reaction to the thimerosal.
Lilly no longer produces or distributes thimerosal, though the reasons are not clear.
In 1999, the American Academy of Pediatrics and the U.S. Public Health Service issued a joint statement alerting clinicians and the public of "concern" about thimerosal. Other pharmaceutical companies agreed to stop manufacturing vaccines containing the preservative in March 2001.
Lilly denies any link between the preservative and autism, as do Wyeth Inc. and SmithKline Beecham, which used Lilly's thimerosal in their vaccines.
The drug makers deny the plaintiffs' claims that thimerosal is "extremely hazardous to human health" or that the companies "intentionally failed to reveal knowledge of risks associated with the vaccines," said J. Alan Harrell, a New Orleans attorney representing SmithKline Beecham. The companies also deny the contention that they "consciously and actively concealed and suppressed any information or knowledge ... or consciously disregarded the safety of children."
Studies on the link between thimerosal and autism have been mixed. Besides the CDC, NIH and other medical organizations, the Autism Society of America -- the nation's largest autism group -- hasn't publicly supported the new batch of lawsuits because "the evidence is still out," says its president, Lee Grossman.
A new approach
Since 1988, the federal Vaccine Act has mandated that injury claims against a vaccine manufacturer first go through the National Vaccine Injury Compensation Program.
A Vaccine Court then awards money to pay for the medical care of people injured by a vaccine. The awards are not paid by the pharmaceutical companies, but rather through a surcharge on inoculations.
Last year, more than 1,200 thimerosal cases were pending before the Vaccine Court. But even there, the link between thimerosal and autism remains undecided.
Chief Special Master Gary J. Golkiewicz has scheduled an evidentiary hearing March 22 to evaluate evidence from both sides on whether vaccines can cause autism symptoms. The decision will be issued July 3, and his conclusions will be applied to the thimerosal cases in the Vaccine Court.
Said Golkiewicz at the time he announced his plan: "So far the issue of thimerosal being a cause hasn't been litigated specifically."
His decision is expected to have significant bearing in the Louisiana cases as well.
"Causation is really going to be the battleground in this case," said Scott Bickford, the New Orleans attorney representing the Wells and other families. "The ultimate question becomes, 'Did the mercury in thimerosal that was shot into these children's bodies create the injury of mercury poisoning?'"
The three pharmaceutical companies have argued in court that the Louisiana autism cases should be dismissed and pursued in Vaccine Court.
"The goal of the Vaccine Act is to protect the nation's vaccine supply," argues Eli Lilly attorney Heather Valliant of New Orleans. "If runaway tort liability forces the manufacturers of ingredients in vaccines out of the market, the attempt to preserve the vaccine supply ... would be in vain."
But the court's guidelines set a three-year statute of limitations and other restrictions on claims, leaving families like the Wells -- who would have had to file a complaint by the time Timothy was 6 -- with no prospects for relief.
Hundreds of lawsuits have been filed in federal and state courts seeking to lay blame on pharmaceutical companies for creating a market for thimerosal, failing to adequately research the dangers or purposely covering them up. Bickford is part of a group of lawyers representing the Louisiana families and others across the nation.
Their strategy is to claim the mercury poisoning has resulted in a loss of consortium -- essentially, the normal relationship the families otherwise would have enjoyed with their child.
They also claim that Lilly either was negligent or purposely withheld information when it marketed thimerosal as a vaccine additive. The point is key: The plaintiffs maintain the case should be decided outside Vaccine Court because Lilly is not being sued as a manufacturer of a vaccine, but of an additive.
In his ruling against dismissing the cases, Brady cited that very issue.
"Lilly's arguments to the effect that it is entitled ... to protection under the Vaccine Act as a vaccine manufacturer are irrelevant to these consolidated cases," Brady wrote. "This is so because Lilly is not sued as a manufacturer."
An uncertain future
"Macaroni! Macaroni! Macaroni!"
It's dinnertime, and Timothy is hungry.
"OK," Richard says. "Get a pot."
There are three clean pots in the cabinet, but none of them is The Macaroni Pot. That one is in the sink, and Richard must wash it immediately.
With his father's help, Tim puts the water in the pot on the stove, and waits for it to heat up -- all the while crunching on the raw macaroni. Foods with casein and gluten give those with autism a morphine-like high.
"Tim, stop. Stop! Stop!" Richard says. "He eats it raw; I hope that's not hurting him."
"They recommend that he eat gluten- and casein-free foods, but it's expensive to stock a pantry with that stuff," Lisa says. "One thing that contributes to his behavior is that his biochemistry is so screwed up. He craves the stuff."
"Messed up," Richard says quickly.
"Screwed up!" Timothy says. "Screwed up!"
Though their son is only 9, they are already thinking ahead to his future. While he might be able to dress himself, ride a bus to school and cook a pot of macaroni, they know he'll never be able to care for himself.
And that's what worries them the most.
Richard and Lisa don't want him to be a burden on other family members, but also don't want him living in a state-run home. Their wish is for him to stay in their Bramble Drive home with round-the-clock care.
"The bottom line is, his care is all about money," Richard said. The more money you have, the better care he's going to get."
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B)
http://www.ems.org/rls/2004/01/30/epa_formalizes_l.html
EPA FORMALIZES
"LEAVE OUR CHILDREN BEHIND" MERCURY RULE
Statement of
U.S. PIRG Staff Attorney Zach Corrigan
Today's proposal by
EPA to forego serious action on curbing mercury emissions from power plants
marks a radical departure from the steady forward progress that America has
been making toward protecting women
and children by
reducing this toxic chemical in our food supply.
The Bush
administration is proposing to allow the single largest unregulated source of
mercury to continue emitting high levels for at least the next decade, leaving
our children exposed to risks of developing problems with walking, talking, and
even learning from mercury pollution.
The Administration
should call this the "Leave Our Children Behind" rule, because the
inevitable consequence will be more developmental problems for our children
from the accumulation of mercury in our environment.
In 2000, the EPA
determined that due to the serious health threat posed by mercury, it should
regulate mercury from power plants. In 2001, EPA estimated that under the Clean
Air Act, available technologies could reduce 90 percent of mercury from power
plants, bringing mercury emissions down to roughly 5 tons per year by 2008.
Today's proposal
departs dramatically from this course, and sets a new course favoring the
polluters. EPA's proposal weakens mercury protections by no longer considering
mercury a hazardous pollutant, despite growing evidence to the contrary.
Further, EPA's proposal allows some power plants to avoid reducing mercury
emissions, likely creating toxic mercury hotspots. In the end, all of EPA's
proposals allow power plants to emit six to seven times more mercury pollution
into our airways for a decade longer compared to EPA's 2001 determination.
Today marks the
beginning of a sixty-day public comment period, during which EPA will host
three hearings and the public can make its voice heard. EPA should extend the
public comment period and hold more public hearings so that people in every
region affected by this health threat have an opportunity to make their
concerns known. EPA should also withdraw its illegal proposal to regulate
mercury under the less-stringent program that is only meant to be used for
non-hazardous pollutants. Finally, EPA should implement the law, and require
the tightest mercury controls technologically possible by 2008.
# # #
U.S. PIRG is the
national advocacy office for the state Public Interest Research Groups. State
PIRGs are nonprofit, nonpartisan public interest advocacy organizations.
|
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5) Announcing a new DAN! Practice in Orange County:
Dr. Ken Williams and the Orange Coast Family Medical Group are pleased to announce the opening of their Center for Biological and Neurodevelopmental Disorders (CBND). The Center is dedicated to using approved and current DAN! protocols, and a comprehensive evidenced-based biological approach for the treatment of Autistic Spectrum Disorders (ASD) and other related medical diseases. We are currently taking appointments for consultations and appointments.
CBND provides comprehensive and preventative medical care to patients with ASDs and other biological and neurodevelopmental disorders. The center is staffed by physician's assistants and nurse practitioners and certified pediatric nurse infusionists for intravenous therapies requiring IVIG, Secretin, and other therapies for disorders such as heavy metal overload. The center provides the integration of traditional science and medicine with new evidence-based research on the etiology, treatment, and therapies of neurodevelopmental disorders and ASDs. Visit our website at www.ocfamilymedicalgroup.com .
Contact our office in Orange at 714-972-8001
Address: 2881 E. Katella Ave #100 Orange, CA 92861
----
Parent Editorial: As many of you are aware, I had the privilege of working with Dr. Williams as he got his DAN! practice started. We worked together to update the website and to determine how to coordinate the appointments to ensure a quality and comprehensive visit. From the emails I received from the families who met with Dr. Williams, I can tell you they mentioned mostly his kindness, his professionalism and the confidence in knowing he would help them determine the best path for their child. Wow, with so few DAN! doctors available in Orange County I can tell you we are blessed to have one of Dr. Williams? caliber in our area. You must know that I no longer work professionally with Dr. Williams, but continue to support his efforts to help the autism community. He is absolutely dedicated to helping the rest of us.
Mary Romaniec
Mom to Daniel
Member of the TACA family
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6) Need more support? MORE COFFEE TALK !
Coffee Talk is going to be your hour (or so) once the kids are away at school to chat with other families affected by Autism. This is an unstructured, casual meeting environment to chat and talk about what you want to talk about.
Date:
Tuesday, February 17th
Time:
9:00 a.m. – 10:30 a.m.
Location: Diedrich Coffee – Costa Mesa
1170 Baker Street (off the 405 freeway and Fairview Street)
NO need to RSVP, just join us for a little coffee, a little talk, no big whoop!
7) Pfeiffer Treatment Center OUT REACH CLINIC IN ORANGE CO. CALIF.
Will be providing patient services in Garden Grove, CA at Homewood Suites (12005 Harbor Blvd.)
Dates: February 9th, 10th, and 11th
PFEIFFER is an outpatient clinic dedicated to assisting children and adults with biochemical imbalances. We offer natural, individualized treatment emphasizing ADD, ADHD, learning disabilities, autism, depression, thought & mood disorders. Our doctors prescribe individualized nutrient therapy for each patient’s unique biochemistry.
Call 630-505-0300, 8:30 A.M. - 5:00 P.M. (CST), Monday through Friday - For information or to schedule an appointment.
If you know of a family member, friend, or organization that would be interested, please pass along this information. Call us if you would like additional flyers. Visit our Website at http://www.hriptc.org
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8) UPCOMING CONFERENCES & SEMINARS IN SOUTHERN CALIFORNIA:
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|
|
===== In 2004, LA FEAT Meetings will be held the 2nd Monday
of the month, from 7-9 p.m. at First Lutheran Church in Manhattan
Beach. Please join us at our next meeting February 9 at 7:00
p.m. Location: Picture Exchange Communication System (PECS) 2-Day Workshop –
San Diego |
=====
TASK Reading and Writing Solutions Through Assistive Technology
Date: February 10, 2004.
Where: TASK, 100 W. Cerritos Ave., Anaheim, CA 92805.
When: 8:30am - 4:30pm
Contact
Info: 866-828-8275
Fees: $25 / half day, $35 / full day, $45 / two-day Information provided
by course provider:
We
will cover high and low tech reading and writing solutions. Some of the topics
will include: screen readers, abbreviated expansion, word prediction, talking
word processors, portable word processors, storybook software, and more! This
workshop will include a "hands-on" portion in the TECH Lab!
More
information about this course can be found at http://www.taskca.org.
=====
TASK Basic Rights Course
Date:
February 12, 2004
Where: TASK, 100 W. Cerritos Ave., Anaheim, CA 92805
When:
1:00pm -
5:00pm
Contact Info: 866-828-8275
Fees:
$25 / half day, $35 / full day, $45 /
two-day
Information provided by course provider:
An
overview of the 4 basic rights and protections under IDEA, a brief overview of
Section 504 of the Rehabilitation Act, an explanation of record keeping and the
assessment process.
More
information about this course can be found at http://www.taskca.org.
=====
Scientific Meeting on Autism, Main Topic: Mirror Neurons,
Psychoanalysis and Autism
Main
Speaker: Gilbert Kliman, M.D., Medical Director San Francisco's Children's
Psychological Health Center
Discussant: Pauline Filipek, M.D., Associate Professor of Pediatrics and
Neurology, UC Irvine
Feb 21 Los Angeles 9:30 – 4:00, $50, Los Angeles Psychoanalytic Institute 2014 Sawtelle Blvd., Phone: 310 478 6541 Fax: 310 477 5968 lapsi@aol.com
=====
TASK Accessing the Internet: A Surfin' Safari
Date – February 24, 2004
Where:
TASK, 100 W. Cerritos Ave., Anaheim, CA 92805.
When: 8:30am - 1:00pm
Contact
Info:
866-828-8275
Fees: $25 / half day, $35 / full day, $45 / two-day
Information
provided by course provider:
Basic
Internet Training. Have you ever wanted to learn how to "surf" the
internet? Here's your chance! You will learn about e-mail, search engines,
browsing, and learn the definitions of commonly used "internet
terms." We will also provide suggestions on where to access the
internet for those who do not have a computer. There will
be
some "hands on" training available.
More
information about this course can be found at http://www.taskca.org.
=====
TASK IEP Rights and Strategies
Date:
February 28, 2004.
Where: TASK, 100 W. Cerritos Ave., Anaheim, CA 92805.
When: 8:30am - 4:30pm
Contact
Info: 866-828-8275
Fees: $25 / half day, $35 / full day, $45 / two-day
Information
provided by course provider:
An
overview of the rights and protections mandated for special needs children by
the Individuals with Disabilities Education Act and Section 504 of the
Vocational Rehabilitation Act.
More
information about this course can be found at http://www.taskca.org.
=====
Finding Ourselves - 2004 FACT Conference
Date: March 6, 2004
"FINDING BEN: A Mother's Journey Through the Maze of Asperger's"
And
her son, Ben Levinson. Also, Linda Andron-Ostrow,
LCSW Editor of "Our Journey Through High Functioning autism and Asperger
Syndrome: A Roadmap, and Glen Darlington shares his life with you about
growing up with high functioning autism.
Location:
DE NEVE CONFERENCE PLAZA – UCLA (Located at the Northwest portion of the
campus, between Sunset Village and Tom Bradley International Hall.
Suggested parking: Lot 8). Time: 10 AM TO 3 PM.
Costs: $50.00 Individuals - $80 Couples Lunch tickets - $10 or
Bring Your own Bag.
Please subscribe to our email list for further information and registration
forms or call the office at (310) 475-9620 and leave your name and address.
=====
Picture Exchange Communication System (PECS) 2-Day Workshop – San Diego
March 15 & 16, 2004: Picture Exchange Communication System (PECS)2-Day Workshop Presented by Donna Banzhof, M.Ed. & Christine Cavarretta, BCBA
Holiday Inn Mission Bay Sea World $375 professional tuition, $235 parent/student tuition, Includes 2nd Edition PECS Manual and handout packet for note taking
Sara Moore at smoore@pecs.com or 302-368-2515. Mention Sara Moore on your registration form and receive a $20 discount on the one-day workshops and a $30 discount on the two-day workshops
=====
Workshop 4: Teaching Verbal Behavior to Children with Autism and other Developmental Disabilities Hands-on workshop for Tutors and Therapists, March 22- 24, 2004 in Southern California (most likely Torrance or Redondo Beach)? We will have only 21 openings. More details to come.
For more info: Sabrina Y. Marasovich, M.A., Board Certified - Resources in Autism Education -
Phone (310) 320-5856 – web: www.autismed.com
=====
MAJOR Autism Conference announced for Southern California by CASD.
Location: Santa Monica – APRIL or MAY (dates to be announced)
Watch web site for speaker list: http://www.casdweb.org/index.htm
If you have questions or would like more information, please email the director at kazuko@grandecom.net.
=====
DAN! Conference UPDATE:
Spring DAN! Washington D.C. April 16-18
Fall DAN! Los Angeles, CA October 1-3
Watch www.autism.com/ari for more details!
______________________________________________________________________
9) SOCIAL EVENTS:
From Gil Murillo at ProjectSea www.projectsea.org (thanks GIL!) TWO SPECIAL EVENTS:
The UCLA Family Support Community Program is planning their annual 3-day snow trip this coming Valentines/President’s Day weekend. This is a wonderful camp and one can have a great time with the family in a surrounding that is supportive of the Autism community.
You can obtain additional details at http://www.factfamily.org/snowtrip.html
ANGELS FEST 2004!
Tickets are on sale now at the Angel Stadium Box office for Angels Fest 2004 presented by Banco Popular. Tickets are available for both the Saturday, February 14th and Sunday, February 15 dates.
Purchase tickets to Angels Fest for only $5.00 per person, per day at the Angels Stadium Box office only, located at the Homeplate Gate, 2000 Gene Autry Way in Anaheim. Children under 2 are free. Box office hours are Monday - Friday, 9 am - 5 pm. Tickets for Angels Fest will also be available at Gate 6 on the day of the event.
General public access to the event is scheduled on Saturday, February 14, 10:00 am - 5:00 pm and Sunday, February 15, 10:00 am - 4:00 pm.
Parking for both days of the event is free.
A $5 per person donation will give you access to autograph and photo areas. All donation proceeds will benefit the Angels Foundation. Access passes may be purchased on day of event only.
Join fellow Angels fans as we gather for two fun-filled days and the chance to meet your favorite Angels Players, Coaches, Broadcasters and Angels Alumni at the Big A. We've planned a variety of activities for the whole family including:
Look for updated news on Angels Fest 2004 as the event draws nearer.
http://anaheim.angels.mlb.com/NASApp/mlb/ana/community/angels_fest04.jsp
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10) Personal Note:
Too much newsletter for a personal note! Go hug your kids and I will see you next week!
Special thanks for KIM PALMER our own TACA mom and editor of these newsletters.
Hugs, thanks, and be SAFE,
Lisa A Jeff's mom
Web Page for the TACA GROUP: www.tacanow.com - check it out/let me know your thoughts at contact us!
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.
P.S. TACA e-news is now at 1,052 families