Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for November 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 the Southern California autism support group called TACA.
We focus on parent information and support, parent mentoring, gluten/casein-free diets, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA has an official web site at www.tacanow.com
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In this edition of TACA e-news:
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1) Next TACA COSTA MESA support group meeting:
Date: Saturday, December 13, 2003 (always the 2nd Saturday of each month)
Time: 1:00 - 4:00 (NEW TIME!!!!!)
Note, old time slot was NOT available. This
will be our new time slot
from now on!
TOPIC: School District Round Table
An open discussion about school district services for PARENTS
AND
CARETAKERS OF ASD children only!
More info on this event in the next 2 weeks. RSVP’s will be required.
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.)
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:
All meetings at the Vineyard:
January 10, 2004: Big Fun Gymnastics – Occupational Therapy for ASD Kids
Gene Hurwin
February 14, 2003: Speaker to be announced!
March 13, 2004: Speaker to be announced!
Much more is being planned for 2004! Stay tuned!
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TACA has FIVE So. California meeting locations:
1) Costa Mesa: 2nd Saturday of each month (info in item #1 for meeting subjects and details.)
2) Mission Hills (the Valley, man!): NEW the 1st Sunday of every month, 7-9 p.m. Location: Jay Nolan Community Services – 15501 San Fernando Mission Blvd., Suite 200, Mission Hills CA 91345... -- Info: Contact Us
3) San Diego: 4th Tuesday evening – 6:30- 8:00 p.m. – Info: Contact Us
Presents: Annabel Stehli
Tuesday, November 18,
2003
6:30
- 8:00 PM
Catholic Charities, Mira Mesa (Directions below)
Annabel Stehli is the world-renowned author of The Sound of a Miracle, A Child's Triumph over Autism, the riveting story of her daughter, Georgiana Thomas, and the role of Auditory Integration Training (AIT) in her recovery from autism and learning disabilities. Originally published in condensed form as the book section of the December Reader’s Digest in 1990, and in hardcover by Doubleday in 1991, The Sound of a Miracle is a classic in the field. Available in public libraries and in trade paperback, it is currently distributed by Midpoint Trade Books, New York.
AIT was developed by Guy Berard, M.D., a French
otolaryngologist, and involves listening to twenty half- hour sessions of
filtered and modulated music given over a ten-day period. Double blind studies
conducted under the auspices of the Autism Research Institute in San Diego support its benefits. AIT
addresses impairments in auditory discrimination associated with attention
deficit disorder, dyslexia, pervasive developmental delay, hyperlexia, fetal
alcohol syndrome, central auditory processing disorder, depression, and Down
Syndrome as well as autism.
Refreshments will be served. Sorry, childcare is not
offered at this time.
Directions to Catholic Charities: 9535 Kearny Villa Rd. #101, San Diego, CA 92126.
4) Corona: 3rd Saturday – 1:30–4:30 pm - NEW LOCATION!!!
For more info: Contact us
5) Torrance: 3rd Monday of each month at Whole Foods Market on PCH in Torrance – 6:30 - 9:00 p.m. For more info: Contact us
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3) General News:
a) From Gil @ ProjectSEA:
The National Autism Summit Nov. 19-20 is organized by the U.S. Department of Health and Human Services and the U.S. Department of Education. Topics are 1) services for individuals with autism across the lifespan; 2) early screening and diagnosis; and 3) biomedical research.
Keynote speakers include HHS head Tommy Thompson, Rep. Dan Burton (R-Indiana), and Rep. Dave Weldon, MD (R-Florida).
To access the live Webcast:
http://www.tvworldwide.com/events/nimh/031119/
Home viewers should have the free Real Video Player or the free Windows Media Player installed prior to the event and should log on by 7:30 a.m. on November 19. Questions can be directed to 703-961-9250, ext. 223, before and during the event.
Autism Summit Conference Web site: http://www.nimh.nih.gov/autismiacc/events.cfm
(adapted from news release by Autism Society of America, http://www.autism-society.org)
b) From the Shafer Newsletter:
NY Best Buddies Help Disabled Find Special Friendships
They say good friends are hard to find, and as you grow older, you realize that's true.
[John Gray is an anchor at WTEN News Channel 13. His column appears every Wednesday.] http://www.troyrecord.com/site/news.cfm?BRD=1170&dept_id=7018&newsid=1049910
6&PAG=461&rfi=9
Imagine, if you will, having a friend who is always happy to see you. Someone who has nothing but kind thoughts and would do anything for you. Now imagine that person is special. By special, I mean someone intellectually disabled. When we were a less polite society, we called these people mentally retarded.
When I was a kid, these special individuals were kept separate from the rest of us. They rode in special school buses and kept to themselves, and for the most part, were invisible. It's not like that anymore. Now they sit right next to your child in school, raise their hands when the teacher asks a question and sit at the same table during lunch. Still, as much as schools try to “mainstream,” they are different and, truth be told, they are lonely.
That's where Best Buddies New York comes in. It may be the single greatest program that you and I never heard of.
Best Buddies is a lot like the Big Brothers/Big Sisters program - but with an important difference. They find young adults and match them with a person who is, as they like to say, intellectually disabled - Down syndrome, autism, disabilities of this sort. But not severely disabled. These are people who function extremely well in society but lack one important thing - a friend.
The program was the brainchild of Anthony Kennedy Shriver (son of Eunice, brother of Maria). He was a student at Georgetown University in 1989 when he decided to spend some time with an intellectually challenged student. It went so well he got some friends to do it, and then the good idea spread to other campuses.
Today, there are more than 400 high schools and 300 colleges with a Best Buddies program, including 12 schools in the Capital District alone.
Program manager Susanna Adams met me for coffee to talk about Best Buddies, her face lighting up when she talked about these special people who are looking for friendship.
“These individuals are so sweet and giving. All they want from their buddy is friendship. And it's not a big commitment. All we ask is that a volunteer have contact with them once a week. That can be a phone call, e-mail, just sitting and talking. It's not like you have to spend a lot of money or go places to make this person happy.”
Susanna says the rest of us take friendship for granted. Just think about sitting at home on a Saturday night wanting to go somewhere but not wanting to sit alone. That's the life of the intellectually disabled every day. She adds, “Just to have someone to sit with them at a football game can mean so much to these individuals. It makes them feel like they belong. Like they are not so different after all.”
Susanna can't say enough about the outstanding young people in local schools who have volunteered to be a Best Buddy. There's Pamela at The College of Saint Rose and Lidiya at Guilderland High School, who have set the example for other students. It's funny, she says, once you get one popular kid to sign up, the others follow suit.
The local chapter of Best Buddies will celebrate its one-year anniversary with a fund-raiser at Siena College on Dec. 9. Tickets are $25, and the money raised will help the program expand into other local schools. For further information you can call them at 482-4225 or visit their web site at www.bestbuddiesnewyork.org I plan to stop by. Not because they need me, but because I need them. It will do me good to be in the company of people who approach each day with purity of heart and wide-eyed wonder.
Most of us spend our lives chasing money. These individuals seek love. Makes you wonder which of us is the intellectually disabled, doesn't it?
c) CALIFORNIA
UCP/CALIF COMMUNITY ADVOCACY NETWORK
ACTION ALERT - Action Needed: Letters to Governor-Elect
Schwarzenegger Transition Team
WHO SHOULD WRITE
* Letters from people with developmental,
cognitive and other disabilities, the Blind, Deaf, and others, their families,
community-based organizations, direct care and other staff, other advocates and
groups, neighbors and friends. Get everyone - every person with
disabilities, family member, workers and others to write!
* It is better for individuals to write or send
their own letters - even if from an organization. Six people sending six
letters is more effective than one letter signed by six people. Everyone
should write!
WHY
* Your individual letters -
hopefully numbering in the hundreds or even thousands by end of this
week, will welcome the new Administration (as every Democratic and
Republican state officer and members in both houses of the State
Legislature have already done) and urge new incoming Governor Arnold
Schwarzenegger and incoming California First Lady Maria Shriver to remind all
Californians of the promise of the Lanterman Developmental Disabilities
Services Act, Americans With Disabilities Act (ADA), the Olmstead Decision, the
Individuals With Disabilities Education Act (IDEA) and others laws that protect
people with developmental, cognitive and other disabilities, the Blind and Deaf
and others.
* We also want to highlight the wide range of
issues that impact our communities, including SSI/SSP, Medi-Cal, the staggering
impact of workers' compensation rates that community organizations must pay,
special education, early intervention, services and supports provided by
community organizations funded through regional centers, services from independent
living centers, housing, transportation, communications, crime and abuse,
increasing federal resources and more.
* This is meant to coincide with the November
18th "Rally for the Promise" on the North Steps of the State Capitol
and also in front of the Ronald Reagan State Office Building in Los Angeles. It is not a protest, but a rally to remind ourselves
- and all Californians - of the promises that protect people with
developmental, cognitive and other disabilities.
WHEN
* Write (see below for sample) your letter today
- and send before the end of this week. (You can also send early next week, but
for impact, to coincide with letters being sent by hundreds, perhaps thousands
of others, so send it THIS week)
WHAT TO DO
* Write your own letter or print out (or cut and
paste or copy) the sample letter below, be sure to add in date and fill in your
own name. Using this sample letter is okay for others to use. Mail to the
Schwarzenegger Transition Team in Sacramento (no fax available)
* This is NOT meant to be a protest letter but a
welcome letter that also highlights our issues
WHERE TO SEND YOUR LETTER
Send via US Mail:
Schwarzenegger Transition Office
770 L Street
Sacramento, CA 95814-3325 OR
SAMPLE LETTER
[Put Date here]
Governor-elect Arnold
Schwarzenegger
Transition Office
770 L
Street
Sacramento,
CA
95814-3325
Dear Governor-elect Schwarzenegger:
As a California registered voter and a part of the community of people with developmental and other disabilities, I want to welcome you and the new Administration as you become our Governor. I also want to welcome Maria Shriver and your children.
As you know, our issues
impact adults and children with developmental (including mental retardation,
cerebral palsy, autism), cognitive (including traumatic brain injuries) and
other disabilities, the Blind and the Deaf, families, community-based
organizations who provide services and supports, direct care and other workers
and advocates, seniors and those with mental health needs in every county in
the state. We number millions of people across the state.
As you take office, I hope that all of California
will remember and keep the promise of the Lanterman Developmental Disabilities
Services Act, the Americans with Disabilities Act (ADA), the Olmstead Decision,
the Individuals With Disabilities Education Act (IDEA) and the other laws that
protect people with developmental, cognitive and other disabilities, the Blind
and the Deaf.
Our issues include the impact of staggering workers' compensation rates that community organizations must pay (taking scarce funding away from services and programs); housing, jobs, healthcare, transportation, communications/technology (as needed by people with disabilities); crime and abuse (against people with disabilities); funding for community-based services (including wages for direct care staff); funding for critically needed Medi-Cal programs and services, increasing federal resources and funding; mental health needs; education for students with special needs and much more.
The programs and services that impact our communities include Medi-Cal; SSI/SSP; In-Home Supportive Services (IHSS); services provided by community organizations funded through regional centers or the state for people with developmental disabilities; independent living centers for people with disabilities; special education; early intervention programs for infants and more.
The main State departments and agencies that are responsible for many of these services critical to people with developmental and other disabilities include the Department of Developmental Services (regional centers/developmental centers), Department of Social Services (IHSS, SSI/SSP, licensing of many facilities and programs for people with disabilities and seniors, ticket to work); Department of Health Services (Medi-Cal services and programs, including critically needed optional benefits for people with disabilities and residential facilities); Department of Education (special education, and also adult education programs that serve people with developmental and other disabilities), Department of Mental Health (mental health programs, state hospitals), Health and Human Services Agency (Olmstead State Plan implementation), Department of Aging (many senior programs)
Perhaps most important is the impact of what these promises actually mean to people with developmental and other disabilities in my own community. As our new Governor, you have our warm welcome and our hope that you will urge all Californians to keep the promises made over the past 35 years to people with developmental and other disabilities, to the Blind, to the Deaf and to seniors and those with mental health needs. Over 35 years ago, a parent advocate said to the Legislature that "we're here to speak for justice" when it considered passage of the Lanterman Act. Now, 35 years later, it is about that promise and more. It is also about hope. Thank you very much and welcome as our new Governor.
Sincerely yours,
[sign your name]
PRINT your name
PRINT your address and city
FOR MORE INFORMATION
ABOUT THIS CA UCP/CALIF COMMUNITY ADVOCACY NETWORK ACTION ALERT:
* This is a online action alert for all
Californians with developmental (& other disabilities), families, providers
and other advocates, from the California Coalition of United Cerebral Palsy
Associations/California Community Advocacy Network.
* 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, Legislative Director - CA
Coalition of United Cerebral Palsy Associations
1225 8th Street Suite 480 Sacramento, CA 95814
VOICE PHONE: 916/446-0013
FAX number:
916/446-0026 email:
martyomoto@rcip.com
Coalition Chair: Philip Ksarjian (UCP of
Greater Sacramento)
Past Chair: Ron Cohen (UCP of LA and Ventura
Counties)
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4) VACCINE NEWS
FROM TACA SAN DIEGO BECKY ESTEPP – TV COVERAGE IN DETROIT ABOUT VACCINES:
This is the best report I have ever seen on television! Thanks so much for bringing this to our attention. Coincidentally, my friend's brother is a reporter at WXYZ. She sent him the PBS show we did last June on this topic. I would like to think they were inspired by our story, but who knows. Please, everyone get on the link. You will love it.
Bye,
Becky
http://www.detnow.com/news/0311041703.html
Investigation: Autism and Informed Inoculation
Reported by Steve Wilson
Web produced by Jennifer DiDomenico
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5) Need more support? MORE COFFEE TALK !
Coffee talk is going to be your hour (or so) once the kids are away to 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.
Note about our first installment: there were six of us! Not only did we have fun chatting, we solved all the world’s problems! This was a lot of fun! If you can join us – please do so! If the location/time is inconvenient – start your own!
Date: Tuesday,
November 18th
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!
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6) New Magazine / Web Resources
From SI FOCUS MAGAZINE FOR SENSORY KIDS:
Dear Families and Friends,
A number of you have been asking about when the magazine will be available--so I hope this update will be helpful. The website is now up:
Carol Kranowitz and I have been speaking to groups all over the country and mentioning this new resource for parents, teachers and professionals on Sensory Integration. We are currently accepting articles, ideas and questions from parents and professionals alike. We want to meet your needs in this area and share some of your wisdom and experiences with so many. We already have subscriptions coming in from around the world, so we have a great opportunity to connect the community interested in sensory processing.
We welcome your insight regarding children and adults. There is great excitement wherever we announce this new publication. My personal goal is to enlighten, encourage and empower those of us who live and work with children (and adults) with sensory issues.
Blessings to you and your families,
Kathleen Morris, Founder and Publisher
S.I. Focus Magazine
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FROM TACA MOM AMY WALLACE – KEEPING RECORDS STRAIGHT!:
I stumbled across this "notebook" for tracking all of the records for our kids. Some of the pages are great for just getting everything organized for our Dr. visits, etc. They can be downloaded and edited. I don't know about anyone else, but I am always trying to find a better way of collecting everything. I am also sooooo tired of repeating all of the same information to the Dr.'s and agencies..............might be worth a look!http://www.cshcn.org/resources/carentbk.htm
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7) CONFERENCES IN SOUTHERN CALIFORNIA:
Autism/Asperger's Conference - CEUs for ASHA/APA – Garden Grove
Dr.
Tony Attwood with an All New All Day Workshop on Anger Management, Teen
Challenges, and Making Special Interests a Positive. Nov 30 Garden Grove
Registration
7am - close 4:30pm See website for
prices. Anaheim Embassy Suites, Anaheim South 11767 Harbor Blvd. www.FutureHorizons-autism.com
or 800-489-0727
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Autism And Young Children With Visual Impairments – Los Angeles
Infant
Development Association of CA, co-sponsored by LAUSD Infant & Preschool
Support Services. This training will focus on strategies and interventions for
identifying and serving children with visual impairments and autism. Participants
will learn how to build communication skills for these young children. Fremont
Dec. 1, Los Angeles Dec. 2
Registration deadline: Nov 29 - Register online at www.idaofcal.org IDA
Member or Parent - $79.00
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Dramautism – Studio City
Drama
therapy for HFA/Aspie kids (ages 4 to 7). Taught by Debra Clark,
producer-writer and mother of two autistic sons; and Patsy Keating, a special
education teacher for LAUSD.
Now until Dec 28, Studio City - 4pm to 5pm, $30/session - CBS
Television Studios
Debra Clark, dclark0704@yahoo.com
or 818-360-7125
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|
Solving the Relationship Puzzle: Opening Doors to Friendship
for People on the Autistic Spectrum – Los Angeles |
|
===== Picture Exchange Communication System (PECS) 2-Day Workshop –
San Diego |
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MAJOR Autism Conference announced for Southern California by CASD.
Location: Santa Monica – February 20-22, 2004
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.
______________________________________________________________________
8) Personal Note:
I seem to meet new parents of newly diagnosed children every day. This breaks my heart to see the number of new children entering the “system” and journey called Autism. Each new parent always asks for advice – what can I do to help my child? Well, usually that part of the talk takes a few hours, and from TACA meetings and events we do our best to help families get the information so needed in the journey.
In that long discussion with new parents – not only do I recommend one-on-one behavior-based intervention, speech, and occupational therapy – I spend a lot of time recommending biomedical intervention as well. One of the basic starting points for families begins with a Gluten Free/Casein Free (GFCF) Diet. In a recent Shafer newsletter – a quote from a parent struck me and I had to share it with all of you:
In response to the mother who posted about doing the Gluten-Free Casein-Free (GFCF) diet not being enough. In many cases, she is exactly right. I tried the GFCF diet for a year on my son with autism and saw no improvement. Being a skeptic, I wrote off the diet altogether a year ago. However, I have recently discovered that not only is my son Celiac, but he also may have Crohn's disease and is allergic not only to gluten and casein but also eggs, soy, potatoes, pork, and about 25 other foods, many of which I fed him everyday he was on the diet. I could kick myself. I have heard many parents say, "We tried the diet, but it didn't work." I now respond with, "If the GFCF diet isn't working, see a DAN! doctor and get tested for other food sensitivities."
-Jana Marshall
It helps to always try to uncover additional tools in the autism journey. In our journey for Jeff, it is hard to isolate what has helped most. One of the top interventions I would always pick for Jeff has been the GFCF Diet, allergy avoidance and organic/natural foods. For those who have not embarked on this journey, please consider adding it to your New Years Resolutions. And please note there is a ton of info on the www.tacanow.com web site for your reading pleasure.
Hugs, thanks and be safe -
Lisa A Jeff's mom
Web Page for the TACA GROUP: www.tacanow.com - check it out/let me know your thoughts at contact us !
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA does not engage in lobbying or other political activities.
P.S. TACA e-news is now at 799 families