Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for May 2003 - #1.  As always, email your thoughts and or questions. 

 

I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

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IF this email is NEW to you and you don't recognize the name... WELCOME!   These emails happen two to four times a month for Southern California Autism support called TACA.

 

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

 

Talk About Curing Autism (TACA) provides general information of interest to the autism community.  The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

 

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

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

REMINDER PLEASE DISCONTINUE USING lisa.ackerman@anysite.com – ALL NEW CORRESPONDENCE needs to be directed to tacanow@cox.net

 

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In this edition of TACA e-news:

  1. Next TACA Meeting Information
  2. Upcoming TACA Schedule & other TACA meeting schedule info – May - August 2003
  3. Dr Jerry Kartzinel Seminar Reschedule – important information!
  4. General News:
  5. New resources
    1. Medical testing blood draws in Southern California
    2. Occupational therapist availability
    3. Special education law attorney and advocate opens practice
  6. Upcoming Conferences
  7. Gluten Free / Casein Free Restaurants and some menu items
  8. Personal Note

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1)  Next TACA COSTA MESA support group meeting:

 

Date:                           Saturday, May 10th, 2003 (always the 2nd Saturday of each month)

 

Time:                           2:30 - 5:30

School Shadowing.- What to look for and What to avoid!
Presented by Autism Spectrum Consultants – Jessica Postil

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

 

(Please do not contact the church for meeting details.  They have graciously offered use of their facility, but are not affiliated with TACA.)

 

Directions:

405 FWY South, Exit Bristol

Right on Bristol

Left on Baker

Go under FREEWAY.

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

 

And remember, we are still a non-faith based group!

 

CONTACT PHONE FOR DAYS OF THE MEETING ONLY:  949.678.9010

Please do NOT use the cell contact for days outside of the meetings.  Thank you!

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2)  UPCOMING TACA Costa Mesa Meeting Schedule:       

 

May 31, 2003:           Rescheduled Dr Jerry Kartzinel Medical Seminar
(see announcement in the next section on details!)

June 14, 2003:          Kirkman Labs – the new world of supplementation

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

-          Where should you start?  How should you continue?


August 8, 2003:           Who pays for WHAT SERVICES?

                                    Parent options for PAYING services for their children.

 

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

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TACA has FIVE So. California meeting locations:

 

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

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

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

4)    Corona:  3rd Saturday – 2:30pm – 5:30pm – Info: Contact Us

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

 

 

3)  Dr Jerry Kartzinel MEDICAL CONFERENCE INFORMATION:

 

Special Medical Seminar

 

Topic:                          Dr Jerry Kartzinel – Pediatrician from ICDRC

                                    International Child Development Resources Center

                                    Palm Bay, Florida

                                    COMMON MEDICAL PROBLEMS & TREATMENT OPTIONS

                                    FOR CHILDREN WITH AUTISM       

-          Guidelines and suggestions for PARENTS

 

Date:                           Saturday May 31, 2003

Time:                           9:30am – 3:00pm (lunch on your own)

Location:                     Orange County, CALIFORNIA – (you must RSVP to receive directions)

Costs:                         $25 per person  BEFORE May 20, 2002

                                    After May 21 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

Mailing Address, City, State, ZIP Code

Phone Number

Note: This event will sell out. Please be sure to mail your check early.  Thank you.

 

Questions??               tacanow@cox.net

Who is Dr Jerry?         www.icdrc.org

Babysitting:                 Unfortunately no babysitting is available for this event

 

 

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4        General News:   IDEA LAW results / TODAY SHOW on an Autism Treatment

 

IDEA LAW Results:

House Approves Bill to Increase Funding for Special Education (IDEA)

 

      [By Nick Anderson for the LA Times. THANKS TO THE SHAFER AUTISM NEWSLETTER.] http://www.latimes.com/news/printedition/asection/la-na-schools1may01,1,5907798.story?coll=la%2Dnews%2Da%5Fsection

 

The House on April 30th approved Republican-crafted legislation to reshape education programs for disabled students — an area of school reform perennially controversial among parents and educators.

House Republicans said that their bill, passed 251 to 171, would free time and money for teachers to give extra help to children in special education programs and prevent other students from being incorrectly identified as learning-disabled.

Most Democrats opposed the bill, saying it failed to protect the rights of disabled children. They also said it fell short of a guarantee of adequate federal funding to cash-strapped local school districts.

The bill, backed by President Bush, now heads to the Senate. A compromise is probably months away.

At issue is an update to a landmark 1975 law that guarantees equal access to a "free and appropriate" public education for 6.5 million disabled students. Before that act was passed, many disabled students had been shunted aside by school systems that were either unwilling or unable to provide programs to meet their needs.

Despite sizable increases in federal funding for special education in recent years, many school districts still assert that they don't have enough money to meet the federal mandate.

Currently, Washington reimburses states for about 18% of the cost of special education programs — or $8.9 billion a year. The bill approved Wednesday would authorize increases of $2.2 billion in the fiscal year that begins Oct. 1 and an additional $2.5 billion in the following year, to bring the federal subsidy up to 25% by 2005. Republicans say they are aiming for a 40% subsidy within seven years.

But those authorizations are goals, not guarantees. Democrats tried, and failed, to persuade Republicans to make special education a mandatory part of the federal budget.

"What we are asking for is to ensure that children with disabilities have the accommodations, the aides, the qualified teachers, the curriculum and other things they need to receive a quality education," said Rep. George Miller of Martinez, top Democrat on the House Committee on Education and the Workforce.

He said the money at issue is "chump change" compared with the tax cuts Republicans have supported in recent years.

Rep. John A. Boehner (R-Ohio), chairman of the committee, replied: "Turning special education into a new entitlement spending program would be an unmitigated disaster for children and teachers, who have waited years for meaningful education reform."

Boehner also said that Congress has accelerated special education funding since Republicans retook the House in 1995.

The bill was endorsed by several national groups representing school administrators, school boards and teachers; it was opposed by disability rights advocates, who criticized it as failing to ensure protections for some of the most vulnerable students in the school system.

All but one member of California's Republican delegation voted in favor of the bill. Rep. David Dreier of San Dimas did not vote. Most California Democrats opposed the bill, although Democratic Reps. Dennis A. Cardoza of Atwater, Calvin M. Dooley of Visalia and Jane Harman of Venice supported it. Also not voting were Reps. Xavier Becerra (D-Los Angeles) and Michael M. Honda (D-San Jose).

Among many changes, the bill would alter the special education system to:

      •  Reduce documentation required for tracking disabled students;

      •  Allow some additional money to be spent helping younger children with reading and other basic skills, in an effort to prevent "misidentification" of students as learning-disabled;

      •  Boost training for special education teachers;

      •  Encourage mediation of complaints instead of litigation.

* * *

How They Voted on the IDEA

If you want to follow up on how your representative voted, go to

http://clerkweb.house.gov/cgi-bin/vote.exe?year=2003&rollnumber=154

 

 

TODAY SHOW SHOWCASES LISTENING THERAPY AS A TREATMENT FOR AUTISM:

 

http://www.msnbc.com/news/909205.asp

May 5 —  One in 250 American babies is diagnosed with some form of autism. Autism is a complex developmental disability that affects a person’s social interaction and communication. To date — there is no known cure. But, “Today” host Katie Couric takes a look at how a special music and sound therapy has become a turning point for an autistic child.

 

 

 

 

 

       TO HER PARENTS Sharon and Dave, Ashley was perfect — the second daughter they’d always wanted.
       Sharon, says, “She looked beautiful, she looked perfect, I was elated. I wanted another child so Kacey could have a playmate — they were14 months apart. Kacey would be a great role model.”
       But Ashley had a different idea, at 16 months she preferred to be left alone.
       “She would tune us out when you called her name, kind of be in her own world. I couldn’t imagine that there’s something wrong with my child,” says Sharon.
       But there was something wrong with Ashley. After a hearing and speech evaluation, it was determined that while her hearing was fine, her speaking ability — at 19 months — was the equivalent of a 6 month-old.
       “My heart just sunk,” says Sharon.
       Dr. Chuck Conlon, a neuro-developmental pediatrician at children hospital in Bethesda, Maryland, examined Ashley. “We really looked at the hallmark of her social interaction abilities and her communicative abilities, it was autism spectrum disorder.”
       “Autism? Ashley’s not autistic,” said Sharon.
       While devastated, Sharon was also determined to find help for her little girl.
       Around Ashley’s second birthday, she started speech and occupational therapy.
       But despite a 20-hour a week program for almost a year she made little progress.
       So Sharon decided to try a special listening program developed by French doctor Alfred Tomatis, who theorized that autistic children have under-developed inner ears that can be re-trained through intensive sound therapy.

 

 

 

 

 

     
       “The Tomatis is really looking to help your ear to listen better and to perceive sound better, and in doing that to help start language emerge,” says Leslie Neale, a recreational therapist at the Spectrum Center in Bethesda, Maryland.
       At the center, Ashley was exposed to music of Mozart after it had been filtered to bring out the high frequencies.
       Neale says, “Mozart carries higher frequencies in the music and the instrumentation carries along very consistently with the human voice.”
       Ashley also listened to her mother’s voice after it’d been modulated.
       “With the mother’s voice tape — we simulate for the children what it sounded like to them when they were in the womb,” says Neale.
       It is in the womb that hearing develops. The fetus picks up only high frequency level of the mother’s voice and other sounds. The Tomatis therapy is designed to replicate those sounds heard in utero, in order to re-awaken the ear’s natural ability to listen, and ultimately stimulate the brain’s desire to communicate.
       Neale says, “For some kids, it’s really opening another new door to them in an entirely new world.”

 

 

 

 

 

 

       For Ashley, the result was nothing short of miraculous.
       Sharon says, “The second day, I really remember, we got into the car, we were driving home and all of a sudden she said, ‘I want cookie!’ She’d never said anything spontaneous like that before. Dave and I looked at each other and go, ‘what did she just say?”
       After more than a year of Tomatis listening therapy combined with interactive games, Ashley is now part of the crowd.
       “She learned to talk, she learned to pretend play, she learned to hug, and she learned to love us. Tomatis was just that switch,” says Sharon.
       But autism experts caution against false hope. They stress that the Tomatis method is not a cure, it’s not science, and it’s not meant for every autistic child.
       “I don’t think that I could make this a treatment recommendation from the standpoint of definitely do this, until there’s more evidence to suggest there’s good clinical science to say this works,” says Dr. Conlon.
       But for Sharon and her husband Dave, this is all the proof they need.
       

 

 

Special note:

The Swain Center, a Tomatis provider will be opening an office in Southern California – Costa Mesa - sometime in July 2003.  They are scheduling Tomatis evaluations between now and the office opening.  For additional information on Tomatis and The Swain Center – please see:

 

www.tomatis.com – Tomatis main information web site

http://www.theswaincenter.com/ The Swain Center – Tomatis Provider web site

 

The Swain Center
795 Farmers Lane, Suite 23
Santa Rosa, CA 95405
Phone: (707) 575-1468
Fax: (707) 575-0823

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5)    New Resources for Southern California

 

Occupational Therapist:

 

Current openings for Individual OT Sessions
Private Pay or School District Funding.

Therapist is very experienced licensed OTR, specializing in treatment of children with autism.

The Speech & Language Connection, Inc.
660 Baker St. #111
Costa Mesa, CA 92626
Phone (714) 424-9392
Fax (714) 424-9394

 

 Medical test Blood Draws

 

THE GREAT PLAINS LAB is offering phlebotomy services provided by, Kristine Davis LVN.  I am the California consultant for GPL.  I have worked as a Pediatric Nurse for a majority of my 13 years, licensed.  I am both certified in IV and Phlebotomy.  In order to protect your child, I use a papoose and arm board.  This has worked out wonderfully! 

 

I do have kits available, if anyone needs them. Please request kits before your appointment.

 

 PLEASE BE SURE TO HAVE A GREAT PLAINS LAB SHEET SIGNED BY A DOCTOR, QUALIFIED NP, PA, OR CHIROPRACTOR, prior to collecting any and all lab work. 

 

I find that the children I have been drawing blood on have been much more relaxed and seem less traumatized by having the procedure done in a home setting. If any parents are interested in opening their home to a group of children in need of  labs, please contact me. 

 

Since I am covering a wide area of Southern Ca., I ask that anyone interested in phlebotomy services ask other members of your support group if they need the service as well.  If we can't get a group together for your area, I will make arrangements to either come to your house or meet at one of the designated lab sites. 

 

I am currently in the process of setting up lab sites in different areas of So. Cal.  There are two clinical offices one in Torrance and another in Santa Monica that I can use. Address and directions will be provided at time of appointment. 

 

 PARENT OR GUARDIAN MUST BE PRESENT WITH CHILD, and bring identification.

 

IF YOU CHILD IS ALLERGIC to TAPES or LATEX, please let me know prior to the appointment.

 

 Starting on May 1, 2003, there will be a individual phlebotomy fee of $15.00. For groups larger than 4,  the individual price will be $10.00

 

CONTACT  Kris Davis at (909) 454-5747 or by email at Krisyd@juno.com for any questions or to schedule an appointment.

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REMINDER** Please read all directions for lab collection kits prior to collecting and transporting specimens. All information must be completed on the lab sheets prior to lab collection.   

 

NEW SPECIAL EDUCATION ATTORNEY OPENS PRACTICE:

 Law Offices of Jack H. Anthony, 600 W. Santa Ana Blvd., Suite 405, Santa Ana, CA 92701

(714) 835-4333.

New Advocate:

Kristina Nicole, 790 N. Euclid Street, Suite 332, Anaheim, CA 92801 (714) 224-1440.

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6)  CONFERENCES IN SOUTHERN CALIFORNIA:

 

2003 TRAINING DIVISION CALENDER

Solutions for Language Training
 July 22-23, 2003

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

Teaching Children with Language Delays
 August 25-28, 2003

Teaching Verbal Behavior
 July 29-31, 2003

All workshops run 9:00 ­ 4:00.
The workshops will be held at:
Centre Concord - 5298 Clayton St. - Concord, CA 94521

For additional information regarding these courses, please check out our website at  http://www.behavioranalysts.com 
Register early ­ courses have a participation limit > of 20!
 
To register: Contact Laurie Winkler at winkler@behavioranalysts.com  or (925) 210 9370 ext. 100
Questions: Contact Stacy Carroll at carroll@behavioranalysts.com  or (925) 210-9370 ext.109

 

 

MAJOR CONFERENCE IN SOUTHERN CALIFORNIA BY GREAT PLAINS LABS!

 

Did you know the DAN! (Defeat Autism NOW) Conference is not being held in San Diego this year? Instead it will be held in Oregon!  Here is a great conference to attend held right here in Southern California!

 

June 21-22, 2003 in Anaheim - National Autism Conference on the Recent Findings in the biological and behavioral therapies for Autism, PDD and Hyperactivity Disorders.Organized by the Great Plains Laboratory, Inc. with collaboratorion of the Talk About Curing Autism and Center for Autism and Related Disorders

 

Registration fees

Early-bird special Before May 1   

Internet registration    $149.00, mail, fax or phone $159.00

 

After May 1, 2003

Internet registrations   $189.00, mail, fax or phone $199.00

 

Spanish session only (Saturday night)      $25.00 (this fee does not apply if

you register for the conference)

 

No refunds are given after May 22, 2003

 

For more information and registration:  www.greatplainslaboratory.com


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7)  Gluten Free / Casein Free (GFCF) Restaurants & Menu items:

 

Want to get away from your kitchen and enjoy a GFCF meal with your child?  Here are some great ideas:

 

1) PF Changs has a GFCF menu – 8 items!  You have to ask for this menu!

OR they can make ANY MENU ITEM GFCF!

 

2) Skosh Monahans has a variety of delicious GFCF items for parents and kiddos! (we love this place and are there at least once a week!  The adult food is awesome!)

 

3) Baja Fresh – several dishes are GFCF – no GFCF menu! All corn tortillas and chips and order them – grilled chicken and steak are marinade. JUST Say no cheese!

 

4) Pick up Stix any menu items without sauce or seasonings!

 

5)       IN & Out Burger: protein burgers and fries (hold the cheese and the bun!)

 

Make sure to check with each restaurant manager about the GFCF status and cross contamination issues!  At the time of newsletter these items were GFCF – but they are not guaranteed forever – be diligent!

 

Got any more favorites?  Please send me a note!

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8) Personal Note

 

We have been seeing a good upswing with Jeff over the past month.  There are a lot of gains.

Gains include:

 

-          Helping a friend at school with their school work

-          Initiating play (kind of lost after “hi” and “lets play” if the play mate is not pushy!)

-          Answering basic questions like: who did you see at school, what did you play, what did you eat for lunch today?  Some delay but this is totally awesome!

-          Mastering phonics – starting to read with some assistance

-          Riding a scooter very well (in late December he could barely STAND on the scooter with one foot on the ground)

-          Beginning addition – loving it BIG time!

-          We are beginning to eliminate prompting throughout Jeff’s program – he is frustrated to start, but doing really, really well about thinking vs. waiting for prompts. (Not that he was prompt dependent – he was just prompt lazy on tough new items!)

 

Greatest weakness

-          Jeff continues to have great difficulty with auditory processing and assembling an original communication. He now has speech but formulation of language is difficult. He can make simple requests to accomplish his basic needs (Daddy, it’s time to go take a bath; Drink milk please; let’s go jump on the trampoline; it’s time to go to school; I’m so happy; where are you) however, he is not yet able to generate a response to an original communication request.

 

With this progress we have great hope for the future. But of course, we are far from being out of the woods just yet. We are just thrilled Jeff is happy, his biology issues are improving and he continues to make progress. We are so blessed. 

______________________________________________________

 

 

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

 

Web Page for the TACA GROUP:  www.talkaboutcuringautism.org  - check it out!

 

 

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 598 families