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:
- Next TACA Meeting Information
- Upcoming TACA
Costa Mesa schedule & other TACA meeting
schedule info –
April – July 2004
- 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?
- Vaccine News
a. Experts Warn Officials – Mercury is a bad
idea (AGAIN!)
- Upcoming RALLY in Sacramento
- Dr Jerry Kartzinel Medical
Seminar Information
- Need more support? MORE Coffee Talk!
- APRIL = Autism Awareness
Month AND an upcoming radio program on AUTISM
- Upcoming Conferences & Seminars
- Social Events
- Personal note (long, sorry!)
|
1.
Next TACA Costa Mesa support group meeting
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 1:304:30 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
|
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!
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
- CAN
WalkNOW April 17th
info: www.cureautismnow.org
/ www.walknow.org
- Project
SEA Walkathon April 24th
info: www.projectsea.org
- 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!
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
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.
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