Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for June 2003 - #2.  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 Southern California Autism support called TACA.

 

 We focus on parent support, parent mentoring, gluten / casein free diets, the latest in medical research, special education law, reviews of the latest treatments, and many other topics as it relates to Autism. 

 

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.

 

IF YOU DO NOT WANT TO RECEIVE THESE EMAILS, just respond and I will be happy to remove you from the list.   EMAIL ADDRESS IS:  contact us

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TACA has an official web site at www.talkaboutcuringautism.org  

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In this edition of TACA e-news:

  1. Next TACA Meeting Information
  2. Upcoming TACA Schedule & other TACA meeting schedule info – June - August 2003
  3. General News:
    1. Diagnosing Autism Early – USA TODAY reprint
    2. Learning To Learn – Inland News reprint
    3. Press Relesse – AB 780 – State of California Changes to Special Education
    4. A Night of Too Many Stars – scheduled air dates on Comedy Central
  4. Vaccine News –
    1. World Net News Daily – Shot Forced on Newborn
  5. New resources in Southern California
  6. Calling all multi-plex Autism Families
  7. Free SOCIAL EVENT FOR TACA FAMILIES!
  8. Upcoming Conferences
  9. Personal note - update

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1)  Next TACA COSTA MESA support group meeting:

 

Date:                           Saturday, July 12, 2003 (always the 2nd Saturday of each month)

 

Time:                           2:30 - 5:30

 

TOPIC:                        Child Neuropsychologist – Dr Christine Majors
- What is in a test and outside evaluations?  Why are they important? 

-          Where should you start?  How should you continue?

 

PLACE:           VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa

 

(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 Bristol

Right on Bristol

Left on Baker

Go under FREEWAY.

The Vineyard church is on the corner just after the FWY - turn left onto the freeway access road, MAKE FIRST right into the Vineyard's parking lot.

 

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 Costa Mesa Meeting Schedule:       

 

July 12, 2003:            Child Neuropsychologist: Dr Christine Majors
- What is in a test and outside evaluations?  Why are they important? 

-          Where should you start?  How should you continue?


August 9, 2003:           Who pays for WHAT SERVICES?

                                    Parent options for PAYING services for their children.

 

September 13, 2003:  Speaker confirming – announcement soon

 

October 11, 2003        Speaker confirming – announcement soon

 

Much more is being planned for September – December of 2003! Stay tuned!

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TACA has FIVE So. California meeting locations:

 

1)    Costa Mesa:  2nd Saturday of each month (info in item #1)

2)    West Hills (the valley man!): the 1st Sunday of every month, on the Cal State University Northridge Campus in the Early Intervention Psych Clinic... - Info: Contact Us

3)    San Diego:  4th Tuesday evening – 6:30- 8:00pm – Info: Contact Us

4)    Corona:  3rd Saturday – 2:30pm – 5:30pm – Info: Contact Us  - Meetings to resume on July 12th!

5)    Torrance:  3rd Monday of each month at Whole Foods Market on PCH In Torrance – 6:30-9:00pm.  Info: Contact Us

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3)    General News:   

 

USA TODAY June 19, 2003

 

http://www.usatoday.com/usatonline/20030619/5256915s.htm

 

Autism now diagnosed early Therapy for toddlers makes 'huge difference'

By Kim Painter

 

Two-year-old Nathan Katzman seemed different ''from the moment he was born,'' says his mom, Nicole. ''Looking back, I think it was something about eye contact.''

 

Dad Gary agrees: ''Instead of looking at us, it was like he was looking through us.''

 

The unsettling signs kept coming. ''You'd call his name and get no reaction,'' says Gary, a Lincoln, R.I., cardiologist. ''We'd play little baby games, going 'goo, goo, goo,' and get no reaction.''

 

When Nathan had no words, or even any babbling that resembled words, several months after his first birthday, his parents really started to worry. They thought their son might be deaf.

 

Instead, he was diagnosed with autism, making him one of a growing number of autistic children diagnosed as toddlers.

 

His parents hope early diagnosis and therapy will make all the difference. And experts say that it just might: ''You can make a huge difference if you get there early,'' says Amy Wetherby, an expert in communication disorders at Florida State University in Tallahassee.

 

People with autism and related disorders, sometimes called autism spectrum disorders, or ASD, have trouble communicating, lack appropriate social skills and display unusual, repetitive behaviors. Many are

mentally retarded. But the severity and exact mix of problems vary enormously. Though some autistic children never speak or learn basic self-care, others grow up to lead independent lives.

 

And because the exact nature of ASD can be hard to pinpoint in young children, many doctors have been reluctant to label toddlers. Studies suggest the average age of diagnosis in the USA has been about 3,

Wetherby says.

 

But that seems to be changing. One reason is that parents and pediatricians are becoming more aware of autism. At the same time, researchers are learning more about the earliest signs and gaining confidence in the value of early, intense therapies that systematically teach children everything from eye contact

to play skills to conversational techniques.

 

Not all children respond, but for many, the therapies can raise IQs, improve communication and social skills and lessen the need for special education. And that's in children identified between ages 3 and 5. Researchers hope they will do even better with children found earlier.

 

''Early detection means earlier access to intervention during sensitive periods of brain development,'' says Rebecca Landa, a speech pathologist who leads an autism study center at the Kennedy Krieger Institute in Baltimore. The institute is one of eight centers awarded grants by the National Institutes of Health as part of a $65 million, five-year effort to address rising concerns about autism.

 

While autism was once thought rare, recent government studies found ASD in three in 1,000 children around Atlanta and almost seven in 1,000 children in Brick Township, N.J. A recent California study found a doubling of childhood autism cases in only four years.

 

Whether the increases are real or the product of better diagnosis is unclear.

 

Whatever the case, there is no blood test or brain scan that can diagnose autism at any age. Instead, doctors must rely on behavior. And, in the past, they often didn't know what to look for in very young children.

 

That's where the work of Landa, Wetherby and others comes in. For the past few years, Landa has been tracking a group of infants and toddlers who have siblings with autism. Previous, anecdotal reports suggest that up to 10% of these children will be autistic, too. So Landa is finding repeat cases among her subjects and collecting data on how affected children differ from unaffected children at the earliest ages.

 

And Wetherby has been screening thousands of Florida toddlers, looking for telltale signs in those later diagnosed with ASD and other developmental problems. Both researchers say they now can spot virtually any child with ASD by age 2 -- some much earlier.

 

How early? Though no one would diagnose a 6-month-old with autism, warning signs can appear by then, Landa says. A typical 6-month-old, she says, has a rich social repertoire. ''If I make a face, they'll laugh,'' she says. ''If I babble and then am quiet and let the baby know I'm just waiting, the baby will

vocalize. That's turn-taking. That's a mini-conversation. They might not do it every time, but they should do it often.''

 

A baby headed for autism, Landa says, often lacks that basic ability to connect. And there may be other signs. For example, instead of burbling and babbling with a variety of sounds, a baby in trouble may produce nothing but high-pitched squeals. By 14 months, she says, the signs can be quite clear.

 

''What you really want to look for is an integrated social approach . . . eye contact, a smile, combined with some kind of social bid.'' A typical child, she says, uses gestures, sounds and facial expressions to ask an adult to look at something, get something or play a game, and the child reads those cues in

others. An autistic child might point, use words or make eye contact while lacking the total communication package.

 

Wetherby agrees. She says she worries when any child over age 1 can't coordinate gaze, facial expression, ges- tures and sounds into a smooth communicative approach.

 

Joy and Daniel Johnson of Elkridge, Md., know the signs too well. Their 3-year-old son, James, who had speech delays and other signs, was diagnosed with autism at 28 months. Now their 18-month-old son, John,''is not talking at all,'' Joy says. ''And he really doesn't have any eye contact. When you call his name, he very rarely turns around.''

 

John also likes to throw toys and repeatedly open and close doors. Most distressing, says Joy, is ''he doesn't express his wants and needs in any shape or form'' except crying.

 

But, through Landa's study, John was diagnosed early and already is getting speech and occupational therapy. Soon, he will begin a therapy called floor time, in which parents and therapists get down on the floor with a child and follow his lead to draw him out and get him communicating.

 

Of course, most parents don't have a top researcher monitoring their children's development. They depend on neighborhood pediatricians, nurses and preschool teachers. And many professionals still don't recognize early signs or appreciate the value of early treatment, say autism treatment advocates.

 

''Often, parents will express a concern and they'll hear, 'Oh, don't worry. . . . Einstein was a late talker,' '' says Nancy Wiseman, president of First Signs Inc., an organization she founded to promote early identification of autism and other developmental disorders.

 

Wiseman, of Merrimac, Mass., has a 7-year-old daughter who was diagnosed with ASD at 26 months and underwent intensive treatment. Sarah has some problems with attention, mood and speech, but she attends a regular first grade and is ''very gregarious, very bright,'' Wiseman says. Without early treatment, ''my child would have been lost to me.''

 

To give other families the same opportunity, Wiseman, a former corporate communications executive, has put together a kit that gives doctors tips for fitting developmental screening into busy practices. The kit also contains a video with footage of typical toddlers and those showing signs of trouble. After a trial mailing to doctors in New Jersey, Wiseman is working with health officials in Minnesota to train doctors, educators and others to recognize children at risk. She hopes to launch a nationwide campaign.

 

That means that, eventually, even more parents will start their battle with autism early. They will have no guarantees of success. But they will have hope.

 

Nathan, now 2, is ''starting to come around a little bit,'' says Gary Katzman. ''Sometimes he sounds like he's saying something.'' But Nathan also still screams when he is frustrated, spins in circles to entertain himself, and bangs toy cars against the wall.

 

Katzman says he fantasizes that maybe Nathan will grow up to be ''just a little strange'' but able to function in the world. But he also can imagine a future in which his son ''never really talks and is always the way he is now, infantile.''

 

''That's what kills me,'' he says. ''I just have no idea.''

 

(PERSONAL NOTE:  When will the general press stop quoting “is this a real epidemic or just better diagnosis?”  If you put any of the reporters in a room with several autistic kids they would be even able to spot one. It is an epidemic folks… now what are we going to do about it?)

 

 

http://www.insidevc.com/vcs/county_news/article/0,1375,VCS_226_2058807,00.html

 

Learning to learn

Program helps autistic children develop speech, social skills

By Alicia Doyle, Correspondent
June 22, 2003

Kyle McNulty is moving forward.

The 6-year-old brown-haired moppet plays with other children his age, shares his toys, sits still for story time and gives a high-five. When asked, he can pay attention, wave, sit and say hello.

While these tasks might seem natural for most other youngsters, for a boy born with autism, the accomplishments are monumental.

"He's so much smarter than I thought he was," said Jennifer McNulty of Thousand Oaks, Kyle's mom.

Just months ago, Kyle's progress wasn't anywhere near where it is today, she said. Though the boy was previously enrolled in a special day class in the public school system, the group environment failed to reap the results the family felt Kyle needed to grow.

 

So in December, they pursued a private program that specializes in teaching children with autism in a way that allows them to achieve their individual potential. Developed in the psychology department at UCLA, the Lovaas Institute for Early Intervention -- LIFE -- is aimed at enhancing each child's life skills through one-on-one instruction and systematic teaching methods.

"I don't think I could have found a better program than this," said McNulty, a Ventura County Autism Society board member. "It's been a ton of work putting it all together, but it's been worth it."

Kyle's potential began to surface in the fall of 2001, when his family found a doctor involved with DAN! -- Defeat Autism Now! In the weeks after starting the program, Kyle was making better eye contact with people and speaking more spontaneously. Kyle, who in the past would only knock down toy buildings, began bringing his mom blocks and saying, "Mommy, help build."

"The changes and progress we saw ... after starting the program were phenomenal," McNulty said.

Autism is a developmental disability that generally surfaces between the ages of 15 and 20 months, according to The Autism Coalition. In most cases, children like Kyle progress normally and then begin to regress, losing speech, social skills and physical abilities. While there are varying degrees of severity, most children completely withdraw into a world of their own.

A frightening aspect of the disorder is that children cannot assess sensory input properly, experts say. Autistic children do not perceive fear or dangerous situations, nor can they filter and ignore stimulus.

Children do not outgrow autism, and there is no cure, experts say. It is a lifelong disability that affects boys five times more often than girls, although girls are generally more severely affected. In the United States, more than 1 million individuals live with autism, making it more prevalent than Down syndrome, childhood diabetes and childhood cancer combined.

Kyle started his education with LIFE in December. Through the program, his mother chose five tutors who work with the boydaily. Edita Zarauskaite, 26, lives with the family full time to give Kyle round-the-clock supervision. Johanna Hals, 23, and Elissa Jordan, 20, both psychology students at California Lutheran University, volunteered as interns and spend several hours a week with Kyle. Heather Christenson of Moorpark, a pre-law student at CLU, also spends many hours a week with the boy.

Kyle's lead therapist, 27-year-old Felice Brock of Thousand Oaks, remembers when she first started working with him only a few months ago. In the beginning, the boy would sometimes bite, kick and scream for hours, draining Brock and her fellow tutors to the point of tears.

"Kyle lives in his own world," explained Brock, a graduate student at California State University, Northridge, where she is studying early childhood education. "He didn't understand how his actions affected other people."

Still, the women patiently returned to the McNulty home each day. Through extremely systematic, simple repetition exercises -- combined with positive reinforcement -- Kyle started to learn.

Within a matter of months, he was able to verbally identify objects, such as a helmet, duck, umbrella and mouse. He learned how to follow instructions, such as putting a piece in a puzzle, stacking blocks and opening a book. He discovered how to verbally identify people in his life from photographs, such as mommy, daddy and all his tutors. He has also learned how to answer basic questions, such as "How old are you?"

"He comes out of his teaching sessions revved up, using new language, interacting more," his mother said. "He is learning to learn and showing us how smart he really is. He has a team of angels on his side helping him -- a team that works because they are passionate about helping Kyle and to see Kyle smile when he realizes what he can accomplish."

Jennifer McNulty is the co-founder of Autism Spectrum Intervention, a parent support and discussion group that meets the third Thursday of every month at California Lutheran University. For more information, e-mail McNulty at jennim@mcnultyco.com.

 

Press Release from Law office of Maurine Graves: PARENTS OPPOSE CHANGES IN STATE AND FEDERAL SPECIAL EDUCATION LAWS

 

            On Wednesday, June 25 at 9:30 a.m., in Room 4203 of the State Senate Building, the California State Senate Education Committee will consider AB 780, which if passed would decrease the statue of limitations for special education issues from three years to one year.  Family members and professionals working with children with disabilities will begin gathering at 6 a.m. under the name “CAPCA” at the Clarion Hotel to prepare for the Senate Education Committee meeting.  

            Following the meetings, from approximately 1 – 3  p.m., a rally will be held outside the office of Senator Barbara Boxer (501 "I" Street) to oppose proposed changes in the Individuals with Disabilities Education Act.  Family members, special education students and professionals will speak.    

A petition signed by hundreds of parents indicates that the proposed statute of limitations reduction “would harm children and destabilize the special education system to the detriment of teachers and conscientious administrators as well as families.”  They indicated that “[m]any parents could not protect their children’s rights, while others would initiate legal proceedings annually,” and the measure “would “encourage the worst school district behaviors: ‘hiding the ball’ as to student needs and available programs, concealing breakdowns in service delivery, and misrepresenting student progress.”  

Valerie Vanaman, a Sherman Oaks attorney who has represented children with disabilities for over 25 years first at legal aid and now in private practice,  expressed concern regarding federal and state developments.  She called for increased political mobilization among parents, noting that “what began as a civil rights movement has turned into a system in which parents rely on the existence of well-established legal rights.  Unfortunately, those rights are in severe danger in both Washington and Sacramento.”  Kathryn Dobel, a Berkeley attorney who has represented children with disabilities for over twenty years and is past chair of the national Council of Parent Advocates and Attorneys (COPAA), indicates that “the rights of children with disabilities are under an unprecedented assault at the federal level, where a bipartisan consensus in support of special education is in danger of breaking down.”  She added that “lowering California’s statute of limitations would be devastating, particularly for low-income and unrepresented parents,” and that “for parents with access to legal representation, a shortened statute of limitations would drastically increase the number of special education filings, because claims would have to be brought within one year or forever waived.”  She noted that the procedural complexity and thus cost of cases would also rise. 

For further information, please contact Kathryn Dobel 510-301-4994 or Maureen Graves at 949-466-4248. 

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IF YOU MISSED A NIGHT OF TOO MANY STARS – Next air dates on COMEDY CENTRAL:

 

If you missed the premier of The Night of Too Many Stars, it will be re-airing on Comedy Central this summer.
       Airtimes for this summer on Comedy Central include:
     Saturday, July 5th at 7pm
     Wednesday, August 20th at 8pm

 

PLEASE NOTE:  This is a comedy presentation by Saturday Night Live volunteers and other stars. I do not recommend this show for children!  But I do recommend it for silly adults.

 

Please note:  Lauren (Jeff’s amazing sister) is featured in a Public Service Announcement during this presentation.  She is amazingly supportive of Jeff – please look for her!  (She is the beautiful 20 year old brunette “I am a sister of an autistic person.”
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4) VACCINE NEWS: -

 

Shot forced on newborn over parents' objections
Orwellian nightmare for 'persecuted' couple as armed guards ensure infant's vaccination
Posted: June 18, 2003

By Diana Lynne
© 2003 WorldNetDaily.com

What was supposed to be a joyous occasion – the birth of their first child – turned out to be an Orwellian nightmare for a young Colorado couple whose newborn was vaccinated for hepatitis B over their religious and philosophical objections, while armed guards stood by to prevent them from intervening.

"It makes me feel like the country I live in is no better than communist China or the old Soviet Union or Nazi Germany, and that's a very sobering and scary outlook," the father, who does not want to be named, told WorldNetDaily.

The saga of "Baby M," as the family calls her to protect her privacy, started with an emergency Caesarean section at St. Mary's Hospital in in Grand Junction, Colo., on April 2. The couple, who has no medical insurance, had attempted to home birth but wound up rushing to the emergency room after the baby's position went transverse.

"Baby M" was born without complication. But as the new parents were basking in the afterglow of the birth, a neonatal doctor informed them a vaccination was in order for the baby and pressured the couple to sign a consent form.

"He told me the initial screening test [on the mother] had come back positive for hepatitis B. I told him that was impossible," said the father. "And he said, 'Well, I didn't think it was very likely either so I had them run it again and I'll probably get those test results back soon. If those test results come back positive again, then I'm going to have to vaccinate the baby.'"

According to the couple's personal physician, the screening test gives a false-positive 40 to 60 percent of the time.

A call for comment from the neonatal physician was not returned.

After the second test also came back positive, the doctor insisted the couple sign the consent form. Citing text he referenced in a medical guide, he informed the parents that the baby must be vaccinated within 12 hours of birth, if the mother has hepatitis B.

Said the father: "We said that we weren't going to authorize him to do so because we did not believe she had hepatitis B and that we believe vaccinations would not be good for the baby even if she did, based upon our religious convictions and also medical evidence."

While not eschewing modern medicine, the couple prefers to avoid it when possible and has a strong conviction against vaccinations.

"We believe in God, and that God has created us in his image. In being created in God's image, we are given his perfect immune system. We are bestowed with His gift, the immune system. We believe it is sacrilegious and a violation of our sacred religious beliefs to violate what God has given us by showing a lack of faith in God. Immunizations are a lack of faith in God and His protection, the immune system," the father maintains.

Vaccination danger

The couple had also done extensive research into the potential serious dangers of vaccinations.

WorldNetDaily reported last week that various studies indicate there is epidemiological evidence of a link between neurodevelopmental disorders and mercury exposure from childhood vaccines. Many medical experts suspect vaccines may be behind a growing epidemic of autism in American children. According to data provided by the U.S. Department of Education, most states experienced a doubling of the rate of children diagnosed with full-syndrome autism over the past few years.

"U.S. infants are exposed to mercury levels from their childhood-immunization schedule that far exceed the EPA [Environmental Protection Agency] and FDA [Food and Drug Administration]-established maximum permissible levels for the daily oral ingestion of methyl mercury," wrote Dr. Mark Geier, president of the Genetic Centers of America, in a recently published study in the Journal of American Physicians and Surgeons.

According to Geier, the EPA limit is 0.1 micrograms of mercury per kilogram body weight per day.

"It doesn't take a genius to do the calculations when on their day of birth children are given the hepatitis B vaccine, which is 12.5 micrograms of mercury," Geier told Insight magazine. "The average newborn weighs between six and seven pounds, so they would be allowed 0.3 micrograms of mercury – but in this one shot they are getting 12.5 micrograms. That's 39 times more than allowed by law."

According to the Centers for Disease Control and Prevention, 12,000 infants are infected with hepatitis B every year by their mother during birth. Infants and children who become infected with hepatitis B are at the highest risk of developing life-long infection, which often leads to death from liver disease and liver cancer. Approximately 25 percent of children who become infected with life-long hepatitis are expected to die of a related disease as adults.

The National Network for Immunization Information, or NNii, a resource for parents recommended by the American Academy of Pediatrics, or AAP, maintains the vaccine is "safe."

NNii addresses the risk of mercury in the vaccine in a fact sheet posted on its website. It explains that Thimerosal, a derivative of mercury, has been used in "small amounts" as a preservative in some vaccine and states "there is no evidence that any child has been harmed by exposure to the amounts of Thimerosal in vaccines."

"In addition, the risk of disease from not immunizing a child is greater than the risk of exposure to low levels of mercury in Thimerosal-containing vaccines," the fact sheet states, but then adds the U.S. Public Health Service and the AAP recommended reducing or eliminating the use of Thimerosal-containing vaccines "to make safe vaccines even safer."

NNii states "infants are at high risk for hepatitis B infection if their mothers are infected with the virus" and recommends these infants be given the hepatitis B vaccine "within 12 hours of birth."

NNii adds that most children who become infected with hepatitis B are born to mothers who are not infected with hepatitis B, and as a result, further recommends all children be vaccinated.

The AAP recommends the first dose of the hepatitis B vaccine be administered to infants born to infected mothers "before they leave the hospital."

'Emergency' hearing

Faced with opposition from the parents over the vaccination of "Baby M," the doctor called in hospital social service worker Joni Vohs, who reportedly threatened the parents with the loss of custody of their baby if they did not comply with the vaccination schedule.

Next, hospital administrators called in attorneys who persuaded Chief District Court Judge Charles Buss to hold an emergency, after-hours hearing at the hospital on the basis that the baby's life would be in danger if she was not vaccinated within hours. The family was given 15 minutes' notice of the hearing and was unable to secure competent legal help in time.

As the father describes it, he went up against a 10-person panel of attorneys, social workers, hospital administrators and the doctor who argued for the immediate vaccination.

The father pleaded for second opinions. He also pleaded for the judge to wait for the results of a more confirmatory test which were scheduled to arrive in 16 hours.

During the four-hour hearing, the father cited the Constitution, the Declaration of Independence and Colorado revised statute, which states there are religious, medical and philosophical exemptions to medical treatment.

Rather than share the 19-year-old's passion for U.S. constitutional history, the lawyers reportedly mocked him.

"When I was reading, the lawyers were whispering back and forth almost laughing at me," the father told WorldNetDaily. "In retrospect, reminding them of the Constitution hurt me more than it helped."

The judge ruled the baby should be vaccinated immediately and also ordered her put into protective custody with the Mesa County Department of Human Services, which the parents were told meant social-service agents had the ability to intervene in the medical treatment of the baby at any time and could take physical custody of the baby if deemed necessary to "protect the child's best interests."

A call for comment from Buss was referred to judicial administrator Judy Vanderleest. Vanderleest told WorldNetDaily the judge would not comment on the case. She also said the emergency, after-hours hearing held at the hospital was the first such hearing held that she could remember.

Matt Weber, an attorney who represented St. Mary's Hospital told WorldNetDaily he was "not authorized to speak on behalf of the hospital on this case."

With armed guards lining the ICU, the first of three ordered vaccinations was administered to the baby. According to the family's physician, the baby immediately exhibited the typical side effects of the vaccine.

A day later, the third hepatitis B screening on the mom came back negative.

By the time the second shot was due to be administered, the father had succeeded in persuading county social worker Dan Overmeyer the vaccination posed more risk than good for the baby's health. Overmeyer opted to not administer any more shots and recommended the release of "Baby M" from protective custody.

Overmeyer was unavailable for comment.

While the baby appears to be doing fairly well, the parents fear the damage is already done, and can only wait and wonder when the adverse effects of the vaccine will appear.

"Most of the doctors that I've talked to from around the country that know about vaccinations have said that it takes months and sometimes years for things to show up," the father told WorldNetDaily. "The scary thing is that there are babies that just die out of the blue supposedly for no reason. ... There's a lot of evidence that these SIDS [Sudden Infant Death Syndrome] victims are actually a result of vaccination."

The Institute of Medicine, a medical research organization that provides health information to the government, released a report last March that concluded all available evidence shows no link between vaccines and unexplained infant deaths.

Religious persecution?

Having recently graduated from college with an associate's degree in telecommunications engineering, the father has now launched a campaign to alert expecting parents about his family's ordeal. He posted their story online with a link to an article outlining the research behind the dangers of vaccinations.

"I want [parents] to know that their rights are no longer being upheld by our government," he said. "If people don't speak out and voice their disapproval and talk to their congressman and make a big deal out of things like this then we will find ourselves very soon in a sort of police state where we have no individual freedoms and the government tells us what to do, what not to do and basically raises our children for us."

The website includes a link for readers to make contributions to a legal defense fund. The family hopes to raise sufficient funds to sue the hospital. They feel both the hospital staff and the judge persecuted them for their religious conviction against vaccinations.

"The doctor and hospital thought we would be easy targets as we were young and penniless. They do not like people who try to avoid the system and they don't like anyone to question whether or not their practices are truly in the best interests of the patient," the father said. "Our aim in legal action would be to get a precedent that protects families from this ever happening again."

Kim Williams, the director of marketing at St. Mary's Hospital declined to discuss the case, citing the Health Insurance Portability and Accountability Act of 1996, which outlines patient-confidentiality rules.

Social worker Joni Vohs adamantly denied the hospital would persecute anyone over their religious beliefs or discriminate against them because of a lack of insurance.

"St. Mary's is a Catholic hospital. We treat everybody regardless of their ability to pay. It's a very compassionate and caring place."

After stressing she was bound by confidentiality rules not to discuss the details, Vohs said the "Baby M" case triggered her recollection of another case in which a 13-year-old girl died a "very slow death" because the family belonged to a church that "believed in prayers over medical treatment" and failed to seek treatment for her until she was almost dead.

"Having worked in child protection for 25 years, to allow a child to suffer or die a horrible death is child abuse," Vohs told WorldNetDaily.

Colorado legislators passed a law as a result of that case which allows the court to step in and override parents' religious beliefs in the event of a medical emergency. Vohs said this law was applied to the "Baby M" case.

"The hospital doesn't do anything on a whim. There's a lot of steps that need to be taken. There was a legal hearing ... and the law was followed," she said.

She also added that the family's story posted online "stretches and alters" the truth in the case.

"Baby M's" father argues there was no emergency and emphasizes that had the staff simply waited the 16 hours for the third, more confirmatory test of the mother's blood to come back negative, the entire "nightmare" could have been avoided

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5)New Resources for Southern California

ABA Therapist Available:

I am an experienced ABA therapist who is looking to do private therapy.  I have been working as a therapist for 1 year and trained by a respectable company.  I am looking for hours in the mornings and afternoons.  I am willing to work with current teams, and am looking for 18 - 20 dollars an hour depending on the location.  I currently live in Aliso Viejo and am willing to travel.  Please email Mindi Green at belle1909@hotmail.com

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Speech Pathology Professionals

Social Skills Summer Camp

 

A Social Skills Summer Camp, provided by Speech Pathology Professionals located in Yorba Linda, will run from Monday to Thursday on July 7th through the 10th.  There are currently openings in the 1:00-3:00 session for ages 9-12.  A morning session for this age

group may also be made available depending on the number of participants interested in attending.  A camp for younger children, ages 5-8, is tentatively being arranged for the following week, July 14th through the 17th  (camp for younger children will run for 1.5 hours per day).  Please call if you have further questions or would like further details.  Camp will include field trips, indoor and outdoor game play, dining and shopping excursions, and much, much more!  If you are unable to attend camp, we still have openings in our weekly Social Skills groups.  Please contact Teresa Cardon or Lori Jacob at (714) 993-3233 for further details.

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Notice from a TACA MOM Re: Neurofeedback provider:
This notice is from Catherine Becker, who is a very experienced speech path who is running her business in Laguna, devoted to neurofeedback and doing speech with autistic kids. She is seeking clients and is vendored with Regional Center. She works in the office of a friend of ours. She is at cathco@cox.net.   

 

6) CALLING ALL AUTISM FAMILIES WITH 2 + CHILDREN AFFECTED

 

National Institute of Mental Health Tells Cure Autism Now Foundation:
Recruit More Families!

Does your family or a family you know have more than one member diagnosed with autism, PDD or Asperger's Disorder? Families now have a significant opportunity to contribute to the future of research which will lead to effective treatments and a cure for autism.
In the past, researchers have struggled to recruit enough families with more than one member affected by autism for genetic studies. Progress tracking the genes responsible for autism was slowed. The needed large family collections for genetic analysis were unavailable.
It was then that the Cure Autism Now Foundation (CAN) established the Autism Genetics Resource Exchange (AGRE) - the world's largest autism gene bank with samples from families with more than one member diagnosed with autism.
CAN, known for its nationwide network of families, has successfully recruited 450 families in just five years. This year, CAN received a 4-year, $3.9 million grant from the National Institute of Mental Health to build on that success and expand its recruitment efforts. AGRE's goal is to recruit 400 new families by 2007.
Families that have more than one member diagnosed with autism, PDD or Asperger's Disorder are encouraged to join AGRE. Families are asked to complete clinical assessments and participate in a family blood draw. Family blood samples are "immortalized" through a laboratory process making the samples a perpetual resource, one that is used repeatedly by qualified researchers worldwide.
AGRE recruiters coordinate all aspects of family participation. Professionals, such as research associates, phlebotomists, and pediatric neurologists, visit the family in their homes to accommodate families' schedules and make participation goes as smoothly as possible.
Once a family's data is collected, AGRE makes confidentially-coded family samples immediately available to researchers for analysis, to publish research, and submit grant proposals. There are currently 102 AGRE-approved researchers worldwide with access to the AGRE samples.  
If your family or a family you know has more than one member diagnosed with autism, PDD or Asperger's Disorder, please join us by calling:

CONTACT: Marianne Toedtman  888-AUTISM-2 (288-4762) familyagre@agre.org
www.familyagre.org  

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7)  CONFERENCES IN SOUTHERN CALIFORNIA:

 

2003 TRAINING DIVISION CALENDER

Solutions for Language Training -  July 22-23, 2003

Teaching Play and Social Skills -  July 24, 2003
 
Assessment of Basic Language and Learning Skills (ABLLS) - July 28, 2003

Teaching Children with Language Delays - August 25-28, 2003

Teaching Verbal Behavior -  July 29-31, 2003

All workshops run 9:00 ­ 4:00.The workshops will be held at:Centre Concord - 5298 Clayton St. - Concord, CA 94521. For additional information regarding these courses, please check out our website at  http://www.behavioranalysts.com  Register early ­ courses have a participation limit > of 20!
 
To register: Contact Laurie Winkler at winkler@behavioranalysts.com  or (925) 210 9370 ext. 100
Questions: Contact Stacy Carroll at carroll@behavioranalysts.com  or (925) 210-9370 ext.109

 

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JUNE 28th FREE AUTISM CONFERENCE - Torrance library is having "A Day of Autism Awareness".  It is a free conference sponsored by the library and L.A. Feat on Saturday, June
28 from 10am to 5 pm.  The speakers are Dr. B.J. Freeman, Dr. Ron Leaf, Dr. Douglas Moes, Marianne O'Brien-Gordon and Rosemond Seligson.  No need to sign up in advance.  The flyer I have says if you have any questions you can contact Dana Vinke at 310-618-5962. 

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JUNE 26th FREE CONFERENCE = Featuring Dr William Walsh – Pfeiffer Treatment Center

NOTICE:  A new, free Speaker Series, called Food For Thought, which would probably be of interest to your members.  The first speaker will be William Walsh from the Pfeiffer Treatment Center, on June 26, 7 to 8:30 p.m. at the Lawrence Family JCC in La Jolla, (UTC area).   My group, Parent ASK, is sponsoring it.  The series is funded by a grant from the First 5 Commission of San Diego.

 

You can get more information at our web site http://www.parentask.org

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Family Focus Empowerment Center of California State University, Northridge

Presents

Pat Trenhaile  - District E Special Education Coordinator - "Navigating Special Education in the Los Angeles Unified School District" Saturday, July 12, 2003 - 10:30 a.m. – 12:00 p.m.

California State University, Northridge - 18111 Nordhoff St. Northridge, CA  91330

Education Building ARCO Conference Room ED1214 - Free Parking in lot B5 off Resdea Blvd and Plummer

PLEASE RSVP TO: (818) 677-5575 FAMILY FOCUS RESOURCE CENTER. All are welcome!

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A New Series of Autism “Mini-Conferences”

Starts In Los Angeles Saturday July 19th and Sunday July 20th

 

      A new series of “mini-conferences” on the theories, causes and treatments of autism for both medical practitioners and parents is scheduled to kick-off Saturday July 19th and Sunday July 20th in Los Angeles. The mini-conferences, called Mini DAN!, are a downsized version of the renowned major DAN! Conferences which take place twice a year.

      The Mini DAN! is designed for those parents and professionals who have difficulty traveling, and for those who have requested smaller, more informal programs. Dr. Jaquelyn McCandless (author of Children with Starving Brains and a well known autism expert) and the DAN! Conference organizers have established the Mini DAN! These programs will occur in various locations and will consist of a full day program for parents, followed by a day-long intensive training for a limited number of local practitioners.

      On Saturday July 19th Dr. McCandless will present evaluation information on the most relevant tests that will help pinpoint a child’s health issues. Parents will be given general guidelines on how to work with their pediatrician and or DAN! trained practitioner to interpret these test results as well as how to prioritize specific treatment interventions.

      The major DAN! conferences have become a well-recognized forum where leading experts report to parents and professionals on the latest research and theories regarding the causes of, and treatment options for, children on the autism spectrum. These conferences draw well over a thousand attendees, and typically alternate their location between the east and west coast.

      The kick-off Mini DAN! conference is scheduled to take place at the Airport Marriott Hotel in Los Angeles, California Saturday July 19th and Sunday July 20th.

      Dr. McCandless will be joined on both days by Teresa Binstock an autism researcher. Ms. Binstock will help dispel the myth that “there are no scientific studies supporting the biomedical approach to treating autism” by sharing published research pointing to the credibility and effectiveness of many DAN! based interventions.

      Maureen McDonnell, the national coordinator of the DAN! conferences and a registered nurse for over 25 years, will discuss effective methods for correcting many of the biomedical disorders frequently found in children on the spectrum: including healing intestinal permeability, balancing bowel flora, practical ways to help children transition to a healthier diet and effective ways to administer nutrients.

      The program on Sunday is specifically designed for practitioners and is limited to 25 participants. It will emphasize testing procedures, interpretation of tests, office procedures specific to this population, treating heavy metal toxicity, nutrient deficiencies and immune dysfunction. Guidelines for safely administering chelation therapy, as well as reviewing recent new treatments will be given with specifics such as nutrient and medication dosages and sources.

      On both days at the Los Angeles program, the presenters will be joined by the lab directors from Doctors Data (David Quig, PhD), Metametrix (Richard Lord, PhD) and Immunosciences (Ari Vojdani, PhD).

      Dr. McCandless and the DAN! Conference committee encourage those parents and practitioners who are not able to attend the larger DAN! conferences, or who wish to participate in this smaller more intimate forum to join them for this unique learning experience.

      To obtain more information on this program and to register online go to http://www.DANconference.com.

 

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AUGUST 5 & 6: PECS WORKSHOP

·         PECS Workshop Date: August 5 & 6, 2003

·         PECS Follow Up Workshop Date: August 4, 2003

·         Location: Holiday Inn Mission Bay- Sea World, San Diego

·         Who should attend: SLPs, Special Ed. Teachers, Parents, Other Therapists, Administrators…

 

         Participants will get $30.00 off their registration fee when they mention on their registration form that they heard about the workshop from Sarah Buswell.

         Registration fee includes a copy of the 2nd Edition PECS Training Manual.

·      Questions? Contact me at sbuswell@pecs.com or 703-421-4001.

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8)FREE SOCIAL EVENTS

 

South Coast Plaza FREE Carousel rides!

 

Attention all TACA members!  Diane Gallant has worked hard with South Coast Plaza management in arranging FREE CAROUSEL RIDES for children with Autism and their siblings!!

Come join us for a morning of fun and horse rides at South Coast Plaza!

Dates:               Next date is: Saturday, 7/19/2003
Times:             8:30am-9:30am (BEFORE the mall opens)

Local:              South Coast Plaza by the carousel (NOT the Crystal Court carousel!)

Costs:             FREE!!!!!!!!!

Park:                Park by ZTejas Restaurant and the Bank of America ATM’s off Bristol

Note:   Kids can ride as often as they would like and based on availability.  Come join us for some free fun!!

NO NEED TO RSVP!  JUST COME AND PLAY!!

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9) Personal Note:

 

UPDATE ON JEFF:

We are chelating Jeff and a lot of folks are asking me, “What are you using?”  First and most important, we are working with a Doctor on this protocol with Jeff.  I recommend ANYONE SEEKING MEDICAL TREATMENT WORK WITH A DOCTOR. (And do not misconstrue this information as medical advice!) We have used TTFD in the past but was afraid the skunk smelling crème further prohibited additional friends for Jeff, so about 2 ½ weeks ago we changed to EDTA.  Here are the information links:

a.      EDTA research information  www.gordonresearch.com

b.     Company to buy from http://www.longevityplus.net/ “Essential Daily Defense” which is the EDTA product Dr Jerry recommends

c.      Known for lead and cadmium removal – also does Mercury

d.     EDTA + garlic + malic acid (apple derived) = natural chelator

We have just collected the urine sample (no matter how many times I have done this Jeff still thinks I am absolutely crazy about collecting his urine!  He always tells me “Good Job Mom!” when I am done!)  No results yet on the first collection – but I will send updates once I have them.

 

Jeff just finished off Kindergarten at the Special Day – speech delay Kindergarten class this past Friday. It was a great year for him – making it a great year for us.  Next year we hope to have Jeff attend the same school and repeat Kindergarten in the typical kindergarten class.  Until then… summer fun is here!

 

And the fabulous Lauren just finished the 2nd year at UCI in English studies with a solid B average.  She continues to amaze us and be so supportive of Jeff.  What a great couple of kids huh?

 

UPDATE ON AUTISM CONFERENCE:

 

This past weekend, I attended the Great Plains conference in Anaheim at the Convention Center. Roughly 600 parents were there to listen to 2 dozen speakers on the latest for Autism medical, behavioral and research.  Roughly 90% of the attendees were at their first autism conference.

I also got a chance to speak to the group of parents and professionals and I have to report – I had fun. I can only hope the information shared was worthwhile for the audience.  I cannot believe I told a parent of a 9 year autistic boy that “Barney needs to die” in response to his age appropriateness and total obsession question about Barney.  Let’s just say – the talk was about a serious topic – autism – with typical Lisa humor. 

It was a great conference and I met a lot of nice parents wanting to do nothing but help their children be the best they can be. You have to love that. I look forward to seeing you all at the next TACA meeting.

 

 

Hugs, thanks and be safe  -
Lisa A Jeff's mom

 

Web Page for the TACA GROUP:  www.talkaboutcuringautism.org  - check it out / let me know your thoughts at contact us ! (NOTE NEW EMAIL ADDRESS!)

 

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 705 families