E-News March 2004

Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for March 2004 - #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.

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 Southern California autism support group called TACA. As always, email your thoughts and/or questions to Contact Us. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

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. 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. TACA has an official web site at: www.tacanow.com

In This Month's Edition of TACA e-news:

  1. Next TACA Meeting Information
  2. Upcoming TACA Costa Mesa schedule & other TACA meeting schedule info –
    April – July 2004
  3. General News:
    a. National CALL YOUR SENATOR DAY Re: IDEA Re-authorization
    b. Sen. Hagel Introduces Resolution on Autism Awareness;
    Resolution Affirms April as Autism Awareness Month
    c. Autism IS Treatable campaign (thanks to Dr. Rimland!)
    d. State Budget Cuts are LOOMING – what can you do?
  4. Vaccine News
    a. Experts Warn Officials – Mercury is a bad idea (AGAIN!)
  5. Upcoming RALLY in Sacramento
  6. Dr Jerry Kartzinel Medical Seminar Information
  7. Need more support? MORE Coffee Talk!
  8. APRIL = Autism Awareness Month AND an upcoming radio program on AUTISM
  9. Upcoming Conferences & Seminars
  10. Social Events
  11. Personal note (long, sorry!)

1. Next TACA Costa Mesa support group meeting

Date: Saturday, April 10th (always the 2nd Saturday of each month)
New Time: 1:00 pm - 4:00 pm
Topic: Managing Difficult Behaviors and How to Eliminate them!
By Dr. Sebastien Bosch – CARD (Center for Autism & Related Disorders)
Place: VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa
(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.)
And remember, we are still a non-faith based group!

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 freeway - turn left onto the freeway access road, make FIRST right into the Vineyard's parking lot.

2. Upcoming TACA Costa Mesa Meeting Schedule

All meetings at the Vineyard:
May 8, 2004: Dr Christine Majors – Child Neuro-psychologist
- What is in a test and outside evaluations? Why are they important? - Where should you start? And important observations about school district and Regional Center testing.
June 12, 2004: Speaker being confirmed
June 19, 2004: Dr Jerry Kartzinel: The latest in Biomedical Intervention for Autism Spectrum Disorders ($25 fee and reservations required – more info in MARCH).
July 10, 2004: Neurology & Autism: The latest findings in neurology and why genetics play an important role Sara Spence M.D., Ph.D. – UCLA Pediatric Neurology Director
Much more is being planned for 2004! Stay tuned!

    TACA has FIVE So. California meeting locations:

    1. Costa Mesa: 2nd Saturday of each month (info in item #1 for meeting subjects and details)
    2. Mission Hills (the Valley, man!): NEW location! 1st Sunday of every month, 7-9 p.m. Location: Jumping Genius – 22750 Roscoe Blvd., West Hills (the corner of Roscoe Blvd. & Fallbrook Ave.) ... -- Info: Contact us
    3. San Diego: 4th Tuesday evening – 6:30- 8:00 p.m. – info: contact us
    March 23 - Dr. Sharon Lerner: "The Philosophy of Inclusion. How to Get an Appropriate Recreational Program for Your ASD Child"
    April 27 - To Be Announced
    May 25 - Dr. Mitch Perlman: "Independent Testing and Evaluations"
    4. Corona: NO MEETING IN MARCH - 3rd Saturday – 1:30–4:30 pm - Corona Library. -- info: contact us
    5. Torrance: 3rd Monday of each month at Whole Foods Market on PCH in Torrance – 6:30 - 9:00 p.m. Info: Contact us
    April 19: Speaker to be announced
    May 17: Dr. Slezak, Naturopath, will talk about Brain Protocol for Autism

3. General News:

a) ACTION ALERT - from the National Down Syndrome Society March 18, 2004 -
National Call Your Senators Day re IDEA REAUTHORIZATION WEDNESDAY,
MARCH 24, 2004

Parents from all over the country will be calling their Senators on Wednesday, March 24, 2004 to express their concerns about the Senate IDEA reauthorization bill (S. 1248). NDSS urges you to take advantage of this spotlight on IDEA by calling your Senators’ offices to discuss S. 1248. The latest word from Senator Frist’s office is that they plan to bring the bill to the Senate floor during the week of March 29th. You can find the telephone contact information for your Senators under “elected officials” in the advocacy section of the website. http://capwiz.com/ndss/dbq/officials

YOUR MESSAGE TO THE SENATORS

Do not bring S. 1248 to the floor without correcting the two most significant problems with the bill:

• Short-term objectives have been eliminated as a required element of the IEP.
• The right to “stay put” in the current placement during an appeal of a disciplinary decision has been greatly limited.

Do not allow amendments that would:

• limit the attorney’s fees that can be awarded to parents by the courts,
• eliminate children’s rights in the name of paperwork reduction or permit any State to waive federal paperwork requirements,
• limit the accountability for students with disabilities under the No Child Left Behind Act.

Do vote for the mandatory full funding of IDEA!

If you have questions or comments about this alert, contact Ricki Sabia at rsabia@ndss.org.

** For the Call-In Day, simply say that you are "calling to urge Senator ______ to Vote No to S.1248 because it will hurt children with disabilities by weakening the I.D.E.A." That's all you have to do - they tally the calls so every call counts!

** Here's a copy of the template letter, cut and pasted below:

Dear Senator _______________________________,

My family desperately needs help that only you and the other Senators on Capitol Hill can provide. We need you to stop this extremely dangerous and reckless IDEA reauthorization train from derailing and potentially harming 6.5 million students who receive special education services in America. If families like mine do not get the help that we need, we will suffer physically, emotionally, and financially.

There are no valid reasons for having to bring Part B of S.1248 to the Senate floor this year. Part B of the IDEA is permanently authorized, and the present IDEA legislation (IDEA ‘97) is actually much more aligned with No Child Left Behind than either H.R.1350 or S.1248. This is especially true now that the No Child Left Behind rulemaking process for individuals with disabilities has begun taking form.

The proposed House and Senate bills (H.R.1350 and S.1248) are neither grounded in present No Child Left Behind realities, nor are they based on reliable data to validate any of the major changes proposed therein, changes which will only serve to hurt children and the people who love and care for them. Both bills are already obsolete, given that they were first drafted prior to many of the No Child Left Behind rules being released and prior to states and local districts having an opportunity to figure out what they would eventually look like.

Families across this country now understand what No Child Left Behind looks like for students with disabilities. We are terrified, and these bills will do absolutely nothing to help our kids escape the numerous unintended consequences that will compromise their access to learning and productive futures.

H.R.1350 and S.1248 are certain to push students backwards rather than forwards. Both bills will compromise access to the general curriculum and banish any hope of having many of our students with disabilities make AYP and become proficient by 2014. It is not the fault of our children and families that No Child Left Behind did not carefully consider them in the first place. Now the same people who brought us this controversial legislation are looking at dismantling our only safety net.

Until No Child Left Behind has been completely rolled out, is understood by all the relevant stakeholders, and has thoroughly addressed the unintended consequences that our students face as a result of its enactment, I am begging you to ask Senator Frist to please remove S.1248 from this year’s calendar and allow our families to reclaim time with our students so that we can work with them to assure that they truly are not left behind.

Please feel free to contact me at any time should you want to discuss this further. I may be reached at: Phone _______________________ Email ____________________. Let me know how I can best help you with your consideration of this life-altering legislation.

Thank you for your serious consideration of this most important matter. The lives of members of my household depend on it.

Sincerely,

FINAL IDEA NOTE: You can sign an online petition at: http://www.petitiononline.com/nos1248/petition.html

b) Sen. Hagel Introduces Resolution on Autism Awareness;
Resolution Affirms April as Autism Awareness Month

On March 10, 2004, Senator Chuck Hagel (R-NE) introduced a resolution recognizing the importance of increasing awareness about autism and affirming April as National Autism Awareness Month. ASA, which first established the annual national autism awareness campaign more than 30 years ago, urges you to contact Senate Majority Leader Bill Frist (R-TN) to ask that the resolution be called to the floor and voted on.

Senate Resolution 317 (S.Res. 317) recognizes "the importance of increasing awareness of autism spectrum disorders, supporting programs for increased research and improved treatment of autism, and improving training and support for individuals with autism and those who care for individuals with autism." The resolution overviews the basics of autism and highlights the alarming statistics, including the $90 billion that ASA estimates autism costs the U.S. economy each year.

S.Res. 317 also provides for eight resolutions, which, summarized, are: 1) supports April as National Autism Awareness Month; 2) commends families of individuals with autism for their sacrifice and dedication to their children; 3) supports the goal of Federally funding aggressive research into autism; 4) commends the U.S. Department of Health and Human Services and the Centers for Diseases Control and Prevention for their "swift implementation" of the Children's Health Act of 2000; 5) stresses the importance of early intervention in improving outcomes; 6) supports the Federal government's commitment to fully fund the Individuals with Disabilities Education Act (IDEA); 7) recognizes the shortage of trained teachers in autism; and 8) recognizes the importance of worker training programs for developmentally-disabled individuals, who can be and are productive members of the workforce.

The resolution has been referred to the Senate Committee on Health, Education, Labor and Pensions. Many resolutions are introduced each year that never make it out of committee, so we urge you to help us increase the chances that S.Res. 317 will not suffer the same fate.

Please take a moment to respond to our Senate autism awareness resolution "action alert" by contacting Senate Majority Leader Frist.

To access the action alert, click here.

To access the full resolution, click here, and do a search for "S.Res. 317"
or go to http://thomas.loc.gov/home/thomas.html and do a search for "S.Res. 317."

From Attorney, Jeff Sell

c) THE "AUTISM IS TREATABLE" CAMPAIGN - All aboard!

As you have read in the many media reports of the so-called "Autism Summit" (a meeting in Washington, D.C.
in late November, 2003), the Federal Government and several multi-million-dollar autism groups hope to be "finding effective drugs for the symptoms of autism" in 7 to 10 years.

NONSENSE! We need to tell them, and the media, and the tens of thousands of families of autistic children who don't know, that many effective treatments are available NOW. If your child has recovered from autism, or improved dramatically, and you would be willing to speak to the media about your child's remarkable progress, YOUR HELP IS NEEDED.

The Autism Research Institute is compiling an extensive list of families throughout the United States who are willing to talk to the media about their child's successful treatment. We have already heard from nearly 400
families with dramatically improved children, and we would like to reach 600 by April, "Autism Treatment Month." Our press release will be issued April 7th to the major media (the national television networks, the New York
Times, USA Today, Newsweek, Time, etc.) as well as to many hundreds of local TV stations and local newspapers.

We hope to be able to give local reporters (as well as national reporters) the names and phone numbers of families who are willing to be interviewed for television, newspaper and magazine reports.

We must get the word out in order to help the thousands of autistic children who are now being treated with harmful drugs like Ritalin and Risperdal. If your child has been mainstreamed or improved markedly, and you are willing to help, please let us know. Your identity will be protected. Only media people seeking families in your locality will be able to contact you.

To enroll yourself and your child in this campaign, please register online at www.AutismIsTreatable.com , or write to the Autism Research Institute, 4182 Adams Avenue, San Diego, CA 92116, or fax ARI at (619) 563- 6840.
Include the following details:
. Your name and your child's name.
. Your address.
. Your telephone and fax numbers, and your email address.
. The age(s) of your child(ren).
. A list of the three interventions that produced the greatest benefits, in order of effectiveness.
. (Optional) Contact information for professionals who can and will confirm your child's improvement.

Please join us in spreading the news that Autism IS Treatable. With your help, we can make a difference!

-Bernard Rimland, Ph.D., Director, Autism Research Institute San Diego, California

If you belong to a support group or Internet newsgroup, help spread the word!

If you would like additional information about autism, please write to: ARI, 4182 Adams Avenue, San Diego, CA 92116, USA or send a fax to: 619-563-6840. Please do not send a response email to this email announcement.

(Editors note: Dr. Rimland, how do we love you? Let us count the ways/children you helped? 1,2,3,4,5, to thousands! THANK YOU!)
+++++++++++++++++++++++++

d) STATE BUDGET CUTS ARE LOOMING! WHAT CAN YOU DO?

Disability Rights Townhall Telemeeting set For 3/22, 10 AM - IHSS, Medi-Cal, Regional Center Cuts to Be Focus

SACRAMENTO - The 8th Statewide Disability Rights Townhall Telemeeting is scheduled for Monday morning, 10 AM to 11:45 AM, March 22, with key important budget issues impacting people with disabilities the focus. Those issues - In-Home Supportive Services, regional center related proposed cuts (including state limits on community based spending, and family share of cost), Medi-Cal reform will be discussed, with latest updates and information. [Note to sites who will host telemeetings - the pass code and phone number and instructions will be emailed to you during the weekend. If you have not received by Monday 9 AM, please contact operator at TTSR at 916/442-8877]

The Townhall Telemeetings, organized by the California Disability Community Action Network, with the March 22nd telemeeting being sponsored by ¡Arriba! and Alternative Residential Services. Previous telemeetings sponsors include Jay Nolan Center, SBC, the Community Technology Foundation of California and the Association of Regional Center Agencies.

The Townhall Telemeetings on Disability Rights and Issues, first started on December 12, attracted over 100 people with disabilities, families, community organizations, workers and other advocates who were located at over 13 sites across California connected by conference call lines.
Subsequent telemeetings have attracted nearly 40 sites and as high as over 350 persons across California. The last townhall telemeeting featured a briefing and discussion on budget issues impacting people with disabilities from California Legislative Analyst Elizabeth Hill and staff analyst Shawn Martin. Previous telemeetings featured Senate President Pro Tem John Burton, Assemblywoman Judy Chu, the director of the Department of Developmental Services, legislative budget staff and others.

WHAT IS A TOWNHALL "TELEMEETING"?
* According to organizers, this is a new effort to reach out to communities and to connect each of them via a conference call line to hear and discuss vital state and local issues. Travel costs and time make it difficult make it difficult for people with disabilities, families, community organization, direct care and other workers to attend meetings in any one location in the state. Organizers say that it is a simple and cost effective way to link diverse communities together and to take the next steps toward organizing for change with unified action.
* Instead of individuals calling in on individual lines, individuals with disabilities, families, workers and community organizations and others go to a specific location (like a meeting room, conference room or even a large living room in someone's home) to join at least 6 other people (usually more) interested in these issues. This approach, according to organizers also allows increased efforts to connect with more diverse communities across the state who are involved in these same issues.
* The purpose, according to organizers, is to mobilize and help empower more and more people in communities across the state with information, to discuss and agree on strategy and next steps in order to successfully fight further cuts to the system and rights for people with disabilities. The townhall telemeetings are meant to be another tool to help build a permanent statewide community-based advocacy force - linking people with developmental and other disabilities, traumatic brain injuries, the blind, the deaf and others, families, community organizations, advocates, direct care (including IHSS) and other workers, regional centers, unions, independent living centers, family resource centers, area boards and other groups.

SITES FOR STATEWIDE DISABILITY RIGHTS TOWNHALL TELEMEETING
Note: these are the locations that MAY be hosting a site for the March 22, Monday morning townhall telemeeting, organized by the California Disability Community Action Network - the 8th in a series. Please call the site BEFORE you go to make sure they are hosting a site for THIS townhall telemeeting. This list is NOT complete.
Interested persons who wish to participate and attend should call the site ahead of time to confirm that they will still be hosting - and also for specific directions to the location. For those organizations or persons interested in hosting a site, there is still time - though limited number of lines are available - please send an email to martyomoto@rcip.com, or call Nancy Chance at Training Toward Self Reliance (TTSR) at 916/442-8877, ext 102 or dial O for the TTSR operator

SOUTHERN CALIFORNIA
Avenues Supported Living services
28415 Industry Dr., #502 Valencia, CA 91355
Contact: Scott and Lori Shepard Phone: 661/702-9788

Easter Seals Southern California - Van Nuys Office
16946 Sherman Way Van Nuys, CA 91406
Contact: Linda Radtke Phone: 818/996-9902

Easter Seals Southern California - Pasadena Office
100 N. Hill Ave. Ste. 100 Pasadena, CA 91106
Contact: Janice Radtke Phone: 626/793-7700

AbilityFirst
1300 E. Green Street Pasadena, California 91106
Contact: Steve Rosenthal Phone: 626/396-1010

Jay Nolan Community Services
15501 San Fernando Mission Blvd., #200 Mission Hills, CA 91345
Contact: Sherlene Allen/Jeff Strully Phone: 818/445-4022 (Sherlene) or Jeff Strully (818/361-6400 ext 1287)

San Gabriel/Pomona Regional Center (check in with receptionist)
761 Corporate Center Drive, Pomona
Contact: Linda Desrosiers (Public Relations Administrator) Phone: 909/868-7512 or 909/620-7722

Californians Care Office
2515 Beverly Blvd - Conference Room Los Angeles, CA 90057
Contact: Julian Andre Phone: 213/385-0749

Arc Riverside
8138 Mar Vista Court, Riverside, CA.
Contact: Jim Stream

Life Steps Foundation, Inc
12555 W Jefferson Blvd #275, Los Angeles, CA 90066
Contact: Susana Kaufmann (Executive Assistant to CEO) Phone: 310/306-4746, ext 27

Westside Center for Independent Living
12901 Venice Boulevard Los Angeles, CA 90066
Contact: Dina Garcia (Systems Change Advocate) Phone: 310/390-3611 ext 255

Foundation for the Junior Blind
5300 Angeles Vista Blvd., Los Angeles, CA 90043
Contact/Lead: Yvette Reynolds Phone: (323) 295-4555, ext. 217

UCP of Los Angeles and Ventura Counties
Westside Center, Culver City
Contact: Anne Rivera or Terri Lantz Phone: (310) 838-2217 or Terri Lantz 818/782-2211 ext 582

Creative Arts Program
3960 Studebaker Rd. Suite 106 Long Beach CA 90808
Phone: 562/ 982-0251 Contact/Lead: Chris Elliot

Easter Seals Southern California - Riverside
1450 University Avenue “F-2” Riverside, CA 92507
Contact: Edna Napier Phone: 909/248-4873

Easter Seals Southern California - Escondido
1035 E. Valley Parkway Escondido, CA 92025
Contact: Jeff Clark Phone: 760/737-3990

United Cerebral Palsy Association of San Diego County
8525 Gibbs Drive Suite 100 San Diego, CA 92123
Contact: David Carucci Phone: 858/571-7803

Easter Seals Southern California - National City
43 E. 12th St. National City, CA 91950
Contact: Natasha Jacobs or Jeff Fine Phone: 619/336-0630

Maureen Graves (parent/residence)
Los Angeles

CONTRIBUTIONS NEEDED TO CONTINUE ADVOCACY EFFORT
VERY, VERY URGENT!!!! As of 3/14, many thanks again to the friends, people with disabilities and their families, community organizations and others who have sent in generous and needed contributions and donations (individual thank you letters will be coming soon!). However, until grant funding is finalized, contributions from people and organizations are still very urgently needed to keep the advocacy efforts going for the next several months. Please make check or money order to: California Disability Community Action Network (or abbreviate CDCAN). CDCAN is not yet a non-profit organization (work on this will have this happen in within the next few months). Send contributions to: California Disability Community Action Network, 1225 8th Street Suite #480, Sacramento, CA 95814. A method to contribute by credit card (through PayPal) is being set up on our website, at www.cdcan.org.

FOR MORE INFORMATION ABOUT THE CDCAN CAPITOL NEWS REPORTS
* This is a news report of the non-partisan California Disability Community Action Network, a link to thousands of Californians with developmental and other disabilities, their families, community organizations and providers, direct care and other workers, and other advocates. These reports (formerly the CA UCP Capitol Reports) is for all of them. These reports go to thousands of people with developmental and other disabilities, their families, community providers and organizations, direct care and other workers and advocates across California. In addition they also go to news organizations, state and local government officials and staff.
* If you would like to get on this distribution (and conversely, get off of it) please send an email with that request to: martyomoto@rcip.com. Sharing information is part of our organizing effort. Please feel free to forward or copy this (attribution is nice). We're all in this together!
Marty Omoto, director/organizer
California Disability Community Action Network
1225 8th Street Suite 480 Sacramento, CA 95814 VOICE PHONE: 916/446-0013
FAX number: 916/446-0026 email: martyomoto@rcip.com
INFO HOTLINE TOLL FREE NUMBER: 1-877-260-0267 (cannot leave messages)
SAME INFO HOTLINE FOR SACRAMENTO AREA: 486-4652
WEBSITE (under reconstruction - available soon!): www.cdcan.org

RALLIES FOR THE PROMISE AND THE RIGHTS OF PEOPLE WITH DISABILITIES - ATTEND BUDGET HEARINGS ON APRIL 19th, 22nd, 26th and 28th! Local Protest march On 4/1 and 4/15 in Sacramento for IHSS, community services funded through regional centers, SSI/SSP, access to health services (Medi-Cal) and more - Watch for Details this Week!


4. Vaccine News

Experts Warn Officials –
Massive Mercury Exposure In Vaccines/Amalgam Fillings Linked To
Epidemic Levels of Autism, Neurological Disease.

For Online access to this press release go to: http://www.universityofhealth.net/PR/3304PRUSNOMHearing.htm

Allege Conflicts of Interest - Enormous Cover-up.

For Complete In-Depth Coverage and Stats of US National Academy of Sciences Continuing Investigation….http://www.universityofhealth.net/NAS/NAS Roster.htm

- UNINFORMED CONSENT, WA DC – Hot accusations of whom to blame swam amongst rumors that the US National Academy of Sciences nearly canceled their hearing because of threats. NAS staff carefully heeled media cameramen and a daylong pressure cooker of expert testimony began.

The Immunization Safety Review Committee, (ISRC), for the National Institute of Medicine, (NOM), under the US National Academy of Sciences, (NAS), heard testimony from 15 experts in a day-long "Safety Review" on mercury levels in vaccines/dental amalgam and links to epidemic levels of autism. http://www.iom.edu/subpage.asp?id=18065

Whether the CDC (Centers for Disease Control) (and a fraternity of other government agencies charged with public safety oversight of pharmaceuticals and medical practices) have acted in the best interests of pharmaceutical cartels instead of the public is at the core.

This was the ninth and the latest in a series of hearings that began in January of 2001 on vaccine safety. Although in July of 2001, the ISRC called for the, "removal of thimerosal from vaccines as a precautionary step in the effort to minimize children's exposure to mercury," no action has been taken to heed their recommendation. (See recommendation) http://books.nap.edu/books/0309076366/html/75.html#pagetop

Fears that failure to act may have maimed an entire generation of children was clearly the primarily focus on the minds of most throughout the hearing.

While opening remarks from the IRSC Chair, Dr. Marie McCormick, defended the committee's knowledge and commitment by showing the audience a 6-inch binder of collected data stating the information was "copied on both sides and that the committee has read them. Believe me, they have read them."

http://www.streamload.com/UIC/McCormick.rm (See video of McCormick), and irascible US Congressman Dave Weldon, (R-FL), also a physician, chastised the CDC's lack of cooperation. Weldon stated the CDC have "erected excessive barriers and have imposed severe limits on access to this data" to researchers and others in congressional
investigations over the past two years,
http://www.streamload.com/UIC/weldon.rm (See video of Weldon),
http://www.autismcanada.org/News/Weldon.pdf (Text of Weldon address)

The audience consisted of a virtual plethora of powerful interests, included media, journalists, world acclaimed experts, congressional representatives, representatives of the FDA, CDC, NIH, ADA, corporate pharmaceutical executives, a diverse infusion of the dental community and parents of autistic children, some of them physicians themselves.

Many of the presentations were of peer-reviewed studies presented by their own authors. Each were required to disclose any possible conflicts of interest in the way of outside funding that might be interpreted as influencing the outcome of their research and reflect on their credibility. (See video clips of each expert and disclosures) http://www.universityofhealth.net/NAS/NAS_Roster.htm

Commonly connected were experts who had no conflicts of interest, all visibly shaken that current practices have exposed an entire generation to a dangerous level of the powerful neurotoxin mercury without consideration of the bio accumulative consequences. Some even chastised themselves for their own failure to act sooner when waves of parents of autistic children begged them to listen. (See video clips of each expert and disclosures) http://www.universityofhealth.net/NAS/NAS Roster.htm

One expert, Dr. Marc Geier, a physician, board certified geneticist and vaccine researcher, has been doing research for over 30 years. Geier has published in over 30 different peer-reviewed publications has been investigating vaccine safety, including the CDC's own Vaccine Adverse Effects Reporting System, (VAERS), for Congress. Geier told the committee, "This society is going to be in big trouble – we cannot have a whole generation of people damaged the way this is happening." Geier went on to say vaccine manufacturers have begun to mislabel vaccines so that the thimerosal cannot be tracked. "I must say I'm a little bit embarrassed to stand here and listen to Verstraeten's work being presented after what they said at Simpsonwood," (referring to an ad hoc meeting at the Simpsonwood Meeting Center in Atlanta in 2000 discussing what to do about Verstraeten's original and alarming findings). " This is NOT a scientific issue. This is about as proven issue as we're ever going to see… What's occurring here is a cover-up under the guise of protecting the vaccine program."

After discussing various studies and presenting some compelling studies of his own, Dr. Boyd Haley, PhD, Chemistry Chair at the University of Kentucky, stated he was "baffled how there can be such different results from people using the same database," to which one IRS committee member retorted, "Are you implying the epidemiologists lied?" Haley responded, "I'm implying that some epidemiologists lied, yes."

Only four of six of those with succinct conflicts of interest with funding from pharmaceutical interests could represent that they found no problem with the powerful additive, mercury. The remaining two had unclear but likely conflicts of interests and rescinded an opinion. (See video clips and stats of experts and disclosures) http://www.universityofhealth.net/NAS/NAS Roster.htm

Media and for more in depth information on this developing story, contact: UnInformed Consent - 425 487 2358 – or visit:www.uninformedconsent.com

Copyright © 2003 QCI. All rights reserved.


5. Upcoming Rally In Sacramento

One Voice for Autism Rally

Place: North Steps of the California State Capital Building
Time: 12 noon - 3 p.m., April 17th, 2004
For more information, contact: Valerie Jacobsen, Phone 925-371-8266,
e-mail, jacobsen5@msn.com or Barbie Dunham e-mail ctlautism@aol.com

Unlocking Autism, a member of the California Autism Coalition, will sponsor the One Voice for Autism rally on April 17th, 2004, in Sacramento, California. The purpose of the event is to unite the Autism community, empower parents, caregivers and service support staff and raise awareness of Autism Spectrum Disorders for Autism Awareness Month, which is the month of April.

Unlocking Autism will be displaying the Open Your Eyes Project, which consists of a portion of the 8 feet high California picture boards representing the amount of children diagnosed to that point in April with Autism. The picture boards have been on display throughout the country, including Washington DC. When all boards from all states of the country stand together, they spread the distance of 4 football fields.

In 2003, according to the latest figures released by the California Department of Developmental Services (DDS), California experienced another dramatic increase in the number of new children professionally diagnosed with the most severe form of autism. In California there are now over 25,000 children afflicted with this life long disability, with 13 new children on average being diagnosed daily. Autism now accounts for seventy percent of new intakes to the Regional Centers . This disability used to be the third most common developmental disability but now is becoming the most common developmental disability among children under the age of 10.

The figures reported by DDS DO NOT include individuals with PDD-NOS (Pervasive Developmental Disorder not other wise specified), Asperger’s, or other autism spectrum disorders. This leads to the conclusion that the increase in cases is NOT due to a change in diagnostic criteria to include a broader range of autism related disabilities.

In the state of California, services families receive through the Regional Centers and school districts are under threat because of the budget crises. Threats include cuts to the In-Home Supportive Services (IHSS), Medi-Cal reductions, Purchase of Service Standards which will eliminate critical services, a service provider rate freeze and cuts to Special Education programs that serve children with autism.

For 2004, the federal government has allocated only $54,000,000 dollars to autism research and treatment, a small portion of what should be funded. The cost of caring for an individual with autism throughout their lifetime can easily exceed a million dollars.

The cause of autism has not been officially recognized but theories range from genetic causes to harm caused to the neurological system during gestation, birthing difficulties, environmental toxins and vaccine preservatives. Thimerosal, a vaccine preservative, is a neuro-developmental toxin which contains mercury. There is a significant body of research that links thimerosal in vaccinations with autism. According to Valerie Jacobsen, a California State Representative with Unlocking Autism who is one of the planners for this year’s event, "My son was no longer the same baby after receiving his 3rd round of Vaccinations. I know in my heart what happened to my son, and the research I have seen to date backs up my suspicions. This rally is not about vaccinations, but you cannot speak about Autism without speaking about cause since the numbers are increasing so drastically."

Autism is at epidemic proportions. Twenty-five years ago, autism was diagnosed in about 1:10,000 people. In the United States, the number of individuals with autism is about 10 million, or 1:166, with the number rapidly growing. Autism is an epidemic few can continue to ignore.

Join our rally on April 17th to bring attention to autism and to support families afflicted with this lifelong disability.

April 18th, the California Autism Coalition will hold a general membership meeting. For more information on agenda and location please contact Marcia E. at MarderE@aol.com

April 19th, California Disability Community Action Network will sponsor an event addressing the possible budgetary cuts to the DDS system. For more information, please contact Marty Omoto at martyomoto@rcip.com


6. Dr Jerry Kartzinel Medical Seminar

Topic: Dr Jerry Kartzinel – Pediatrician from ICDRC
International Child Development Resources Center - Melbourne, Florida
COMMON MEDICAL PROBLEMS & TREATMENT OPTIONS FOR CHILDREN WITH AUTISM
IMPORTANT NEW STUDIES TO BE REVIEWED
Guidelines and suggestions for PARENTS and Physicians
NOTE: Even if you have seen Dr Jerry BEFORE, this presentation material changes.

Date: Saturday June 19, 2004
Time: 9:00am – 1:00pm (lunch on your own)
Location: Orange County, CALIFORNIA – (you must RSVP to receive directions)
Costs: $25 per person BEFORE June 10, 2004
After June 10th and On-Site: $35.00
Scholarship opportunities are available if needed

Registration: Payment is $25 per person –

Please make your check out to ICDRC
Mail to:
TACA – Dr Jerry Seminar
PO Box 12409 Newport Beach, CA 92658-2409

BE SURE TO INCLUDE YOUR INFORMATION:
Name of each attendee
Email address (confirmation will be sent via EMAIL ONLY)
Mailing Address, City, State, ZIP Code
Phone Number
Note: This event will sell out. Please be sure to mail your check early. Thank you. CHECKS WILL BE RETURNED IF MADE OUT TO THE WRONG PARTY!!

Questions?? Contact Us
Who is Dr Jerry? http://www.icdrc.org
Babysitting: Unfortunately no babysitting is available for this event


7. 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, April 13th
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!


8. April is Autism Awareness Month:

Here is a list of activities FOR APRIL
  1. CAN WalkNOW April 17th
    info: www.cureautismnow.org / www.walknow.org
  2. Project SEA Walkathon April 24th
    info: www.projectsea.org
  3. Power of 1.5 Rally in Washington DC April 21-23
    info: www.unlockingautism.org

Radio Program on Autism:
April 12, from 1 pm – 2 pm ET (WMNF 88.5FM). The show is on medicine, is hosted by Carol Roberts, MD, and is also heard on the Internet at www.WMNF.org. The first half of the show is talk, the second half listeners call in with questions. The show is based in Florida, but with the Internet can be heard anywhere. Speakers include: Dr Jeff Bradstreet, attorney Jim Donnelly and our very own MARY ROMANIEC (parent to Daniel).



9. Upcoming Fee-Based Conferences & Seminars
     in Southern California:

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 - (310) 320-5856 – web: www.autismed.com
=====

You are cordially invited to attend an upcoming conference and reception we are hosting here in beautiful Santa Barbara.
SANTA BARBARA ASA AUTISM EDUCATION CONFERENCE:

The conference is being co-hosted by the Autism Society of America, Santa Barbara Chapter and Devereux Santa Barbara in honor of Autism Awareness Month which is the month of April.

We are hosting a reception the evening of Thursday, April 1st from 5:00 - 7:00 PM on the Devereux campus and would be most honored if you could join us. Immediately preceding the reception, Eddie Tuduri will be giving a drum therapy demonstration and Meghan Finn, a young woman with William's Syndrome, who has appeared on Sixty Minutes II and the Montel Show, will be singing at the beginning of the reception.

The conference focuses on research , therapies and families. We have distinguished researchers from the MIND Institute at UC Davis who will be presenting critical and timely information about autism and related disorders. Presenters include Louis Vismara, MD, a parent of four children, one of whom has autism, and a founding father of the MIND Institute. A retired invasive cardiologist, Dr. Vismara currently works as a consultant for Senator Burton and is a Commissioner on the California First 5 Commission. Also speaking will be Rick Rollens, former Secretary of the California Senate, who has a 13 year old son with autism. His son graced the cover of Newsweek Magazine several years ago. Dr. Ron Huff of the CA Department of Developmental Services will be presenting, along with local members of our Tri-Counties Regional Center, on the autism epidemic in California and discussing the major impact this increase is having locally and on communities across California.

Santa Barbara Mayor Marty Blum will be presenting us with a City proclamation for Autism Awareness Month at the conference, County Supervisor Susan Rose will be presenting us with a proclamation from the County, and Carpinteria Vice-Mayor Donna Jordan will also be presenting a proclamation from the City of Carpinteria. Assemblywoman Hannah Beth Jackson, and Assembly candidates Pedro Nava and Susan Rose will also be in attendance and many other local policymakers have been invited.

Thank you for this opportunity to educate and inform you about our conference. Here is a link on the Devereux website that will give you additional information about the presenters. I appreciate your consideration. www.devereuxsb.org to register.

=====
Estate Planning Seminar
When: Thursday, April 22, 2004
MetLife, as well as Attorney Chris Poulos, will discuss the importance of a special needs trust, and other aspects of planning and protecting the future of a loved one with a developmental disability.
Time: 6:30 to 8:30 p.m.
Locale: Regional Center of Orange County-East Area Office, 801 Civic Center Drive, Board Room B, Santa Ana, Cost: FREE Reservations (English recording) can be made by calling (714) 796-5100 ext. 5904.
=====
Academy of Private Practice SLP Annual Clinical Conference Sensory Integration and the DIRtm model
presented by Rosemary White, OTR.
Apr 22 Los Angeles
$190 by April 1st
Marina Del Rey Hotel
Mindy - web www.aappspa.org / email - aappspa@aol.com / phone: 805-497-7661
=====
Autism Conference announced for Southern California by CASD.
Location: Long Beach – May 14-16
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.
=====
Autism One Conference
MAJOR conference in CHICAGO, IL. Yes, that is far, but the speaker lineup and content is AMAZING. Largest amount of speakers and variety of topics! For more details: www.autismone.org
Dates: May 27-30, 2004.
=====
Autism/Asperger's 2004 CEUs for ASHA & APA
Tony Attwood, Ph.D. offers the 2nd in his Asperger's Workshop series, going in-depth on "Behavior & Anger Management, Challenges of Adolescence, Pre-Teen & Teens, and New Perspectives on Turning Special Interests into Positives." 8 am -4:30 pm
Jul 31, San Bernardino Prof.$135 (group rate Prof $115- Student/Family Member $110 (Fam. group rate $95) Person w/ ASD $75 Please see web site for up-dates. Future Horizons 800-489-0727 www.FutureHorizons-autism.com and email: info@FutureHorizons-autism.com
=====
DAN! (Defeat Autism NOW!) 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!

10. Social Events:

Day of Sharing

Date: March 27th, 2004

The Orange County Chapter of the Knights of Columbus will once again be sponsoring the Day of Sharing for the Developmentally Disabled of Southern California.

This event is a daylong festival of fun, food, entertainment, and game booths with prizes for everyone, provided at NO CHARGE.

Where: St. Pius V Church Grounds 7691 Orangethorpe Ave. Buena Park, CA

When: Saturday, March 27th 10 a.m. to 3 p.m.

Please RSVP to Gabriel Ruiz at (714) 839-0564


11. Personal Note:

As promised, HERE IS MY BRAIN DUMP ON AUDITORY TRAINERS/CAPD (Central Auditory Processing Disorder) – my APOLOGIES for the length and posting this if you are not interested.

Happy Reading:

OK – now the news: I have to tell you about a new thing we have just done with Jeff. It is absolutely incredible. Jeff had a CAPD (Central Auditory Processing Disorder) appt w/Carol Atkins in early December 2003 and found that he had big-time issues distinguishing sounds in his right ear with any background noise. He does not have a hearing problem, it is just background noise issue and processing issue. Basically, our observations are that Jeff was “getting” every 2 words of a typical sentence and not hearing all the words or directions people give him. There is a lot more to the diagnosis, but I wanted to summarize it in an email.

Bottom line -
Since that report was completed, we got him fitted with an auditory trainer. Jeff uses the auditory trainer in therapy sessions but MOSTLY at school. The teacher (or aide if they are on the play ground) wears the device -- a microphone -- and Jeff wears something that resembles a hearing aid. All I can say is I am ABSOLUTELY amazed at the difference with the trainer IN his ear and now even more or so with the trainer out of his ear. He is talking more, definitely hearing more by his responses and responding on first requests. What is the strangest thing, it is like Jeff is hearing for the first time all the sentences someone is saying vs. partially hearing them. I have found he is hearing better even without the trainer due to knowing how to concentrate and what hearing is like. (This is hard to describe.)

More info on auditory trainers http://www.telex.com/education/products.nsf/pages/ProductType=Auditory+Trainer+Systems

We had the CAPD eval done by:
Carol Atkins, 5255 Cabot Rd #108, Laguna Hills (949) 951-3362 (typically there is a 6 mo. waiting list, but they can notify you about cancellations if you would like to know.) Does anyone else know of another resource that does this???? PLEASE LET ME KNOW!!

The initial eval was $350 and the trainer was $1800. (The reports and device costs had a prescription from Jeff’s doctor and I have submitted to health insurance. Recently got 70% back on both the eval and the unit. In addition, I realize this is also possible that the district COULD cover the costs of the device but chose to go the health insurance route instead. This is a personal decision and of course your decision is up to you.) It was well worth the process and fees regardless if we get did not the money back.

A few more notes:
1) Device used was an FM Auditory trainer by Phonak. It is the Micro Ear Auditory trainer & X2T transmitter from www.phonak.com
2) Test period for the auditory trainer started December 15, 2003, for one week before holiday break and continually since that time. I did have Jeff NOT wear the device for two days on January 29th and 30th. People working with Jeff at school noticed a difference without the device on these days.
3) The eval forms were completed by Jeff’s Kindergarten Teacher and his two school aides. All forms suggested a positive response to the auditory trainer and recommended continued usage of the device.
4) Our program specialist and speech path made the recommendation for Jeff to be evaluated by a CAPD specialist. (THANK YOU BOTH!)

Parent findings:
- Our feelings prior to the use of the device was Jeff was hearing 2-3 words of a 7-8 word sentence. He would often fill in the blanks and guess at the requests, with his response based on the words heard (or processed?)
-After the use of the device (using both in home with parents, in home with aides and at school), we have found Jeff listens better with and without the device.
-From Carol Atkins’ CAPD report and findings, we notice when there is any background noise, Jeff has a harder time getting attention and responding to a request.
- Jeff is using the Linguisystem – CAPD kit book 2, “Scissors, Glue & Concepts Too” and “Scissors Glue, and Grammar, Too” in the home program with great success. He is distinguishing much better between multi-step and similar instructions and responding appropriately.
- The device has been wonderful for playground interaction/social skills, group activities (auditorium and school assemblies) and class instruction as a non-invasive way to remind Jeff what to do or get him back on task.

The question was asked: "I'd also like to know how they diagnosed the problem and how it went undiagnosed for so long." Jeff is 7 on April 7th. I don’t think I would recommend this route really early on in the autism diagnosis. There are other things that can be evaluated first. In addition, many professionals don’t like to evaluate or diagnose CAPD issues until after the age of 6 due to key brain milestones that should occur on or about that time frame. Again, these are just my uneducated thoughts as a parent.

IMPORTANT: Children must be verbal and developmentally 5 years of age to do a Central Auditory Processing evaluation and assessment

SORRY TO BE SO LONG-WINDED. I JUST HOPE THAT IT MAY HELP SOMEONE.

And lastly – Jeff has been in Kindergarten (typical class with an aide) this year. His recent report card is amazing. Academically speaking, he is where he needs to be in all but 2 categories, and is reading above grade level. We are very pleased with Jeff’s ENTIRE program including: ABA in home, speech, OT, medical interventions and social skills programs. We have a long way to go in the speech delay, auditory processing / word retrieval, and social skills areas but the auditory trainer was a great addition to this entire program.

Hugs, thanks, and be SAFE,
Lisa A. Jeff's mom


Web Page for TACA Group: www.tacanow.com

check it out and 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.

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: tacanow@cox.net.

P.S. TACA e-news is now at 1,106