Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for July 2003 - #2. As always, email your thoughts and or questions.
I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.
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IF this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for Southern California Autism support called TACA.
We focus on parent support, parent mentoring, gluten / casein free diets, the latest in medical research, special education law, reviews of the latest treatments, and many other topics as it relates to Autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
IF YOU DO NOT WANT TO RECEIVE THESE EMAILS, just respond and I will be happy to remove you from the list. EMAIL ADDRESS IS: contact us
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TACA has an official web site at www.talkaboutcuringautism.org
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In this edition of TACA e-news:
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1) Next TACA COSTA MESA support group meeting:
Date: Saturday, August 9, 2003 (always the 2nd Saturday of each month)
Time: 2:30 - 5:30
TOPIC: Who Pays for WHAT?? – Lisa Ackerman
- A review of
who pays for what behavioral and medical care for ASD Kids. This will describe
the different funding resources for families to consider while helping their
ASD child be the best they can be.
PLACE: VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa
(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.)
Driving 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.
And remember, we are still a non-faith based group!
CONTACT PHONE FOR DAYS OF THE MEETING ONLY: 949.678.9010
Please do NOT use the cell contact for days outside of the meetings. Thank you!
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2) UPCOMING TACA Costa Mesa Meeting Schedule:
September 13, 2003: Gluten Free / Casein Free Cooking Class at Bloomingdales
Fashion Island – Newport Beach – by Lisa Ackerman – see item #10 of this newsletter for more details!!
NOTE: RSVP’s ARE REQUIRED!! To RSVP: contact us
October 11, 2003 Beginner Medical
Intervention For Autism – a beginners course
presentation by a new Southern California DAN! / ICDRC Doctor
November 8, 2003 Mainstreaming High Function
ASD Kids - Jessica Postil –
Autism Spectrum Consultants
December 13, 2003 School District Roundtable -
The meeting will start with a general announcement about the state of local school districts. Then each school district or general area will break out into separate groups to discuss general information, share IEP’s and strategies.
Note: This meeting is for PARENTS ONLY!
January 10, 2004: Big Fun Gymnastics – Occupational Therapy for ASD Kids
Gene Hurwin
Much more is being planned for 2004! Stay tuned!
Note: How do topics get selected for TACA MEETINGS? Each location frequently does a formal or informal survey of attendee’s by the meeting coordinator. Based on the meeting attendee’s requests, topics are then selected and speakers are scheduled. Is there a topic you are interested in hearing? Please forward a note to Lisa. We want to make sure the meetings are informative and topical based on the group’s needs. If you have a suggestion, we would like to hear from you!
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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)
West Hills (the valley
man!): the 1st Sunday
of every month, on the Cal State University Northridge Campus in the Early Intervention Psych Clinic...
- Info: Contact Us
3)
San Diego: 4th Tuesday evening – 6:30- 8:00pm – Info: Contact Us
4) Corona: 3rd Saturday – 1:30pm – 4:30pm – for more info: NEW LOCATION!!! EMAIL FOR MORE INFO AT: Contact us - Topics for the TACA Corona location are:
·
Saturday, August 16th (1:30pm-4:30pm)
Christine Little-Educational Advocate (in Riverside)
Ralph Peters from Law firm Anderson & Kreiger in Temecula regarding
Vaccination Litigation
·
Saturday, September 20th (1:30pm-4:30pm)
Dr. Kurt Woeller from San Diego (DAN! Doctor) to speak regarding DAN! protocol and biomedical interventions
·
Saturday, October 25th(1:30pm-4:30pm)
Jack & Christina Anthony (Legal Advocacy Firm)
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Saturday, November 15th (1:30pm-4:30pm)
The wonderful Lisa Ackerman (Interventions that worked for my child)-This will
be presentation that was given at Great Plains
Conference for those of you that missed it
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Saturday, December (to be determined!)
Social dinner with spouses planned again like last year, but need to determine
a date.
5) Torrance: 3rd Monday of each month at Whole Foods Market on PCH In Torrance – 6:30-9:00pm. Info: Contact Us
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3) General News:
FDA, CDC & Bush Called Upon to Act as Autism Reaches
Epidemic Levels
[From an organization press release via PRNewswire.]
http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=40324375&ID=infobrix&scategory=The+Iraq+Situation&
Scientists, physicians, Capitol Hill leaders and parents of autistic
children will hold a press conference Wednesday, July 23rd, to announce the
latest discoveries into the cause of autism. Held at the Rayburn Office Building, Room 2203, at 10:00 a.m., many will also be there to demand a White House
Conference.
Thousands of parents recently
wrote the President requesting a White House Conference to discuss the issues
surrounding the rise in autism.
Although most requests were not answered, a letter to one parent from President
Bush stated that he simply didn't have time. “He preaches 'No Child Left
Behind' but he is not willing to put the number one health crisis of America's children on the national agenda?”
asks Bobbie Manning, parent of an autistic child. “My son and thousands like
him are sick. They need medical help that won't happen without the necessary
research funding,” she says.
Independent researchers are now coming forward
to tell of their latest medical findings. Parents want the government to take
notice and fund other studies to follow the groundbreaking research.
In an open letter to President Bush, Congressman Dan Burton (R-IN) wrote, “We must develop solutions to help families and communities cope with this crisis, and we must also do all we can to determine what is causing this epidemic and learn how to stop it. A White House Conference could bring
together the best scientific minds to chart a comprehensive research agenda to
uncover the underlying causes of this epidemic, including the exploration of
the biologically plausible theory of mercury poisoning though childhood
immunizations and dental amalgams.”
Autism is now the number one disability for
children, even more prevalent than childhood cancer, diabetes and Down's
Syndrome. A study released in 2001 by California's M.I.N.D. Institute concluded that the increase in autism was not due
to better diagnosis, a broader diagnostic range, or migration patterns. The
report concluded that the increase is real.
School budgets are collapsing under the weight
of educating autistic children. Medicaid and other social programs in cities
and states are feeling the pressure. Autism will cost the American economy over
$300 Billion in the next ten years. A recent CDC report found that as many as 1
in 150 children now have autism, which would equal to about 1 in every 68 families.
In 1990, only 1 in 10,000 children were affected. April Oakes, Vice-President
of the Autism Autoimmunity Project said, “We are now at epidemic levels. If you
don't know someone with autism now, you will soon.”
SENATE LEADERS REACH BUDGET DEAL - SENATE TO MEET ON SUNDAY AT 6 PM TO VOTE ON BUDGET PROPOSAL - DETAILS COMING LATER TODAY
Senate President Pro Tem John Burton (D-San Francisco) and Senate Republican Leader Jim Brulte (R-Rancho Cucamonga) have reached a budget deal late this afternoon, in a surprise joint press conference. The deal does not contain any tax increases - other than the vehicle license fee increase, and calls for some level of additional cuts, borrowing and shifting of expenditures. [Details will be reported later this evening in a separate UCP Capitol Report].
"It is a budget that will protect the most needy and vulnerable in our society" said Sen. Burton though he conceded that it was a budget that did cause cuts in many programs. He did not specify what cuts were made.
Sen. Burton said that the Senate, which adjourned just after 3:30 PM this afternoon, will reconvene Sunday evening at 6:00 PM to vote on the new budget proposal. Burton and Brulte both were hopeful that the proposal - which is based on the original Senate Democratic budget proposal, with additional reductions, shifting, borrowing, and no tax increases.
The Assembly, which adjourned earlier this afternoon, took no action on the budget and is not expected to meet again until Monday afternoon at 12 noon (July 28).
WHAT
DOES THIS ALL MEAN
* California is now 24
days without a budget - and the impact of no budget is growing daily as more
and more people who need programs and services and workers are affected.
It does seem likely that the Senate will pass this proposal.
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4) CALLING ALL GRANDPARENTS!
As a grandparent of an autism spectrum disorder child, the thoughts must race in your mind on how you can help your child help their child. Grandparents are often under utilized purely for the facts – parents have their hands full managing a household with a child affected by autism (or children!) Thanks to a great grandparent - TACA has started a new support group of GRANDPARENT MENTORS. Grandparents can help in the following ways, both for their immediate families and others:
1. Family help – picking up and taking grandchild to therapists, doctors, etc. Attend doctor appointments with parents. Two sets of ears are better than one.
2. GF/CF Diet – shopping and baking for our grandchildren. This is an ongoing chore.
3. Research - read legislature and medical reviews and keep abreast of research. Help with sending faxes and/or telephone calls to federal and state offices to support legislature in favor of research/aid for autism.
4. Bottom line – help any way we can help, i.e. Laundry, babysitting, shopping, spending time with sibling(s) and just being there, especially a telephone call away. Having a backup person can relieve pressures in stressful situations.
Many grandparents live out of town, but can be very helpful in contacting legislative representatives regarding families issues.
“One of the best reasons for getting up in the morning is our grandchildren.” Author unknown.
For further information and questions please contact Grandma Jo (Joanne Davies) at 714-968-4667, or e-mail at harold.davies@verizon.net OR contact Lisa Ackerman at contact us . (This is great for volunteering your OWN parents to attend and get ready to help you!)
Special thanks to Grandma Jo for taking on this important effort!
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5) New Resources in So Cal
SPEECH THERAPY SERVICES AVAILABLE
The Speech & Language Connection, Inc., has some openings for individual
speech beginning September 1st. We are happy to announce we have added
two speech therapists to our staff to serve children with autism and their
families. One of our therapists is fluent in Japanese, and is very interested
in working with multicultural/multilingual families. Please contact Melanie
Foshee or Kim Eissing (714) 424-9392 if you are interested in inquiring about
services.
NEW SPECIAL EDUCATION LEGAL RESOURCE:
The Law Offices of Jack H. Anthony has a new website dedicated to making special education more understandable for families. It also features news articles about autism, school legal challenges, and other items in the news, along with definitions of various disabilities and obtainable related services. The Law Office is located in Santa Ana in Orange County. The website is www.anthonychildadvocates.com.
tomatis ORANGE CO. PROVIDER HAS AN OPEN HOUSE
Who: Dr. Swain and the Listening Center
What: Informational Parents Night
When: Monday, July 28th, 5-6 pm
Where: 2850 Mesa Verde, Costa Mesa (Cross Streets: Harbor & Adams)
Phone Number (714) 979-1160
Why: Join Dr. Swain and the Listening Center staff for an opportunity to exchange information, ask questions, and share information. This is an opportunity to learn more about the Tomatis method and hear what parents have to say.
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NOTE: Want to be listed in this section ? Please send your Who, What, When, Where, Why information to Lisa at contact us Information must be sent via email only and be ready for publishing. We do not write announcements for this section.
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6) CONFERENCES IN SOUTHERN CALIFORNIA:
Did you miss the Great
Plains Labs conference
in June?
The speaker presentations for most of the sessions is on
http://www.greatplainslaboratory.com/anaheim/speakers.htm
2003 TRAINING DIVISION CALENDER
Assessment of Basic Language and Learning Skills (ABLLS) - July 28, 2003
Teaching Children with Language Delays - August 25-28, 2003
Teaching Verbal Behavior - July 29-31, 2003
All workshops run 9:00 4:00.The workshops will be held at:Centre Concord -
5298 Clayton St. - Concord, CA 94521. For additional information regarding
these courses, please check out our website at http://www.behavioranalysts.com
Register early courses have a participation limit > of 20!
To register: Contact Laurie Winkler at winkler@behavioranalysts.com or
(925) 210 9370 ext. 100
Questions: Contact Stacy Carroll at carroll@behavioranalysts.com or
(925) 210-9370 ext.109
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AUGUST 5 & 6: PECS WORKSHOP
· PECS Workshop Date: August 5 & 6, 2003
· PECS Follow Up Workshop Date: August 4, 2003
· Location: Holiday Inn Mission Bay- Sea World, San Diego
· Who should attend: SLPs, Special Ed. Teachers, Parents, Other Therapists, Administrators…
Participants will get $30.00 off their registration fee when they mention on their registration form that they heard about the workshop from Sarah Buswell.
Registration fee includes a copy of the 2nd Edition PECS Training Manual.
· Questions? Contact me at sbuswell@pecs.com or 703-421-4001.
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8) SOCIAL EVENTS
South Coast Plaza FREE Carousel rides!
Attention all TACA members! Diane Gallant has worked hard with South Coast Plaza management in arranging FREE CAROUSEL RIDES for children with Autism and their siblings!!
Come join us for a morning of fun and horse rides at South Coast Plaza!
Dates:
Next date is: Saturday, 8/16/2003
Times: 8:30am-9:30am (BEFORE the mall opens)
Local: South Coast Plaza by the carousel (NOT the Crystal Court carousel!)
Costs: FREE!!!!!!!!!
Park: Park by ZTejas Restaurant and the Bank of America ATM’s off Bristol
Note: Kids can ride as often as they would like and based on availability. Come join us for some free fun!!
NO NEED TO RSVP! JUST COME AND PLAY!!
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9) Outreach Medical Clinic IN Southern California by Great Plains Labs!
Outreach clinic available July 26-28, 2003!!
Physician consultations, important laboratory testing and phlebotomy services
Location: Residence Inn Anaheim Hills Yorba Linda,
125 South Festival Dr., Anaheim Hills, CA 92806. Phone 714-974-8880
Detailed directions follow
Space is still available but it is limited -
If you are interested please register soon
Call 888-347-2781 or e-mail iryna4@aol.com
to register
Great Plains Laboratory is happy to offer the outreach clinic services to
parents who need physician's guidance to the appropriate laboratory testing and
a comprehensive treatment program for their children with autism, developmental
disorders and attention deficit disorders.
You will receive the necessary test kits at the consultation, and the
phlebotomist will send us the blood samples collected at our outreach clinic
immediately after collection.
The following physicians will be available at the clinic to guide you through
the testing procedure and help you order the appropriate tests:
Dr. Art Zipporin, M.D.
Dr. Michael Brown, N.D.
Dr. Kurt Woeller, D.O.
Dr. Karima Hirani, M.D., MPH.
You can schedule your follow-up consultation with the same physician after the
results of the tests are ready. If you already have a good physician and are
only interested in phlebotomy services and guidance to get the most appropriate
testing, please indicate so on this form and call us at 913-341-8949 to get a
free consultation about the testing. We will then send you the test kits, which
you can take to your doctor to get his approval for testing, and send us the
samples.
Great Plains Laboratory would like to gather important data from this outreach
clinic to use in further research, with patients' and doctors' consent.
Important note:
If you choose Dr. Michael Brown or Dr. Art Zipporin, whose office is located in
Kansas, you can visit their clinic OR do
the follow-up consultation over the phone. Those physicians can also approve
the necessary testing in advance, and you can start the testing process
earlier.
Clinic fees:
Phlebotomy services $20.00
15-minute consultation with a physician $75.00
30-minute consultation with a physician (if you decide you need longer time to
discuss the individual symptoms) $ 150.00
1-hour consultation (if you have already done some tests and are interested in
more in-depth consultation about the results and further testing) $ 300.00
For more information: Call 888-347-2781 or e-mail iryna4@aol.com to register
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10) Dr Jerry Kartzinel Seminar Tapes on sale
Conference was held: May 31, 2003
Total Number of Tapes: 3 (90 minute -double sided tapes)
Total Hours: 6 (including presentation & Question / answer period)
Total Costs: $25.00 Includes shipping ($20 if you pick up at TACA Meeting)
Summary:
The latest medical treatment and protocol by world renowned Dr Jerry Kartzinel of the GND Foundation / ICDRC. Hear the latest in treatments and guides for parents on how to help navigate the medical needs in the autism world! Web site; www.icdrc.org
Disclaimer: These tapes are not to be misconstrued as medical advice. You need to seek individual professional treatment from your doctor before trying any treatments mentioned on the tapes. Ordering these tapes means you agree to this statement.
Name:____________________________________
City:_____________________________________
State:_________ ZIP Code: _____________
Email Address: ________________________
Checks only for order. Make checks payable to: ICDRC Check no. attached:________
Please mail form TACA P.O. Box 12409 Newport Beach, CA 92658-2409
HOW FUNDS ARE BEING USED: The sales of the tapes act as a fundraiser for ICDRC/ GND Foundation. These tapes are being produced at a low costs for parents. Funds will be distributed to ICDRC / GND Foundation or hard costs on producing the tapes.
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10) Gluten Free / Casein Free (GFCF) Cooking Class at Bloomingdales!:
Based on the requests from TACA Surveys – a beginner level GFCF Cooking class will be held on September 13th at the Bloomingdales Fashion Island Location in Newport Beach.
Important note: THIS MEETING AT BLOOMINGDALES IS IN LIEU OF A REGULAR TACA COSTA MESA MEETING AT THE VINEYARD NEWPORT CHURCH!
Date: Saturday, September 13, 2003
Time: 2:30 – 5:00pm
Local: Bloomingdales HOME STORE in Newport Beach at Fashion Island
The Home Store is located on the THIRD FLOOR above the ATRIUM COURT!
It is best to park near Hard Rock Café and enter off the Atrium Court glass doors.
Speaker: Lisa Ackerman
Reservations: YOU MUST RSVP to attend the class!
Details: The presentation will be a beginning Gluten Free/Casein free (GFCF) cooking class. It is estimated over 85% of children affected with Autism, ADD, ADHD and other learning disorders greatly benefit from an organic, clean, GFCF diet. This course will do an overview on why do the GFCF diet and how to get started. We will be preparing GFCF foods to appease the appetites of children so be prepared to eat like a kid! Handouts will be available for free off the internet site: www.talkaboutcuringautism.org or available in binder form for a suggested donation of $10.00 each. Binders will include recipes for the day, all recommended recipes, how to get started, food shopping lists and much more! Donations for supplies are appreciated but not required for attendance.
Note, RESERVATIONS are required for the class. To reserve your spot, please email tacanow@cox.net – please indicate if you would like to purchase a binder
Recipes will include the following: infamous meat puffs (these are finger sized meat loafs for kids) a GFCF, egg free, yeast free bread, a tasty muffin, traditional chocolate chip cookies, and a chicken dish, and some meal planning ideas around allergies.
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11) Personal Note:
Hi TACA families! As you are all WELL aware – there are ups and downs in the life of an autistic child. It seems to hit Jeff 1-3 times a year - a down cycle that can be explained or cannot be explained (I call those the X-files of autism.) Jeff seems to be in a slight downturn with a bit of OCD behaviors and easy to upset behaviors. What happened to my easy going, compliant child?! Unfortunately, this is a standard cycle we all face, I am not, and you are not alone. Each time the down cycle happens, parents fears always mount “is this a new feature of my child?” or “will he lose more of his gains?” and my least favorite, always popping in my mind “is this permanent???!!” God forbid. Most of the time these down cycles are just what we want to see …. temporary.
With Jeff in a downcycle Glen is always there to remind me about the amazing progress Jeff has had over the past three years. Often it is hard to listen when past progress is pointed out – when I am wanting future progress here today!
On top of the setback, Jeff got a fever for the first time in a couple of years. So we have been laying low for a couple of days. Lots of cuddle time and kicking back.
As always, I have to remind myself and you to take the time to note about progress, document daily events (including all foods, supplements, behavior notes and comments,) check your check lists, and use my “WHAT IS IT” check list off the www.talkaboutcuringautism.org under the Medical link. The goal is to figure out these cycles and hope to offset or minimize them in the future. Being just a parent, it is really hard to know if what you are doing is right vs. wrong. But the check list and good resources like Dr Jerry make all the difference in this process and in figuring out WHAT IS IT!
What about chelation results you say? Well the tests results came back from Doctors Data using EDTA and we are getting larger quantities of arsenic and cadmium out of Jeff – including a schmig of mercury. We are going to do a toxic urine metals without a chelator and report back if these metals are excreting without EDTA or just with EDTA. I will keep all updated. (This is also what could be setting Jeff back.)
I have to remind myself if someone had all the answers, the research was complete, autism would not exist and our kids would be cured. Unfortunately, autism exists, research is needed and we cannot give up hope for our kids. For now, I continue to try what my doctors recommend for Jeff, behavioral intervention, speech, occupational therapy, tomatis and a myriad of other therapies in hopes of helping Jeff be the best he can be.
Reminder: Do not misconstrue anything in my personal notes as medical advice. I am just reporting one parents findings on our autism biomedical journey with a boy named Jeff. Please be sure to check with your doctor before pursuing any medical treatment for your child!
Hugs, thanks and be safe -
Lisa A Jeff's mom
Web Page for the TACA GROUP: www.talkaboutcuringautism.org - check it out / let me know your thoughts at contact us ! (NOTE NEW EMAIL ADDRESS!)
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA does not engage in lobbying or other political activities.
P.S. TACA e-news is now at 731 families