Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for October 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 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:

  1. Next TACA Meeting Information
  2. Upcoming TACA Costa Mesa schedule & other TACA meeting schedule info –
    September - January 2004
    1. IMPORTANT: Location & time change information for TACA Costa Mesa meetings!
  3. General News:
    1. ICDRC announcement
    2. Announcement about U.S. Senate Bill S.722
    3. Please join us for a special event - Dr Bernie Rimland of the Autism Research Institute to speak at TACA San Diego!
  4. Vaccine News
    1. Safe Minds Analysis of Denmark Data
  5. TACA Families, we need to hear from you!!  IMPORTANT!
  6. Article:  Getting Picky Kids to EAT!
  7. Need more support?  Introducing Coffee Talk!
  8. Upcoming Conferences
  9. Personal note

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1)  Next TACA COSTA MESA support group meeting:

 

Date:                           Saturday, October 11, 2003 (always the 2nd Saturday of each month)

 

Time:                           1:30 - 4:30 (NEW TIME!)

 

TOPIC:                        Beginner Course on Biomedical Intervention
By Dr.
Bob Sears

NOTE:  This is a beginner’s course!  Dr Bob will be providing a basic overview of tests and protocols, and will answer questions.

 

PLACE:                       NEW TEMP LOCATION!:  Harbor Christian Fellowship Church

740 West Wilson St. Costa Mesa

 

Directions:  from the 405 freeway, exit HARBOR BLVD in Costa Mesa. Go south and turn right on WILSON ST.  The church is about 1 mile down Wilson!

To get driving directions FROM YOUR HOUSE to the meeting location, please use http://maps.yahoo.com/.  It is a great resource!

 

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:

 

Reminder:  Meeting locations TO BE DETERMINED FOR NOVEMBER ON!

 

November 8, 2003    Mainstreaming High Functioning 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 attendees by the Meeting Coordinator.  Based on the meeting attendees’ requests, topics are then selected and speakers are scheduled.  Is there a topic you are interested in learning more about?  Please forward a note to Lisa.  We want to make sure the meetings are informative with topics 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)     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

4)   Corona:  3rd Saturday – 1:30–4:30 pm -  NEW LOCATION!!!

EMAIL FOR MORE INFO AT: Contact us

Topics for the TACA Corona location are:

·        Saturday, October 25th (1:30 pm - 4:30 pm)
Jack & Christina Anthony (Legal Advocacy Firm)

·        Saturday, November 15th (1:30 pm - 4:30 pm)
Lisa Ackerman - Interventions that worked for my child.  This will be the presentation given at the
Great Plains Conference for those who missed it.

5)  Torrance:  3rd Monday of each month at Whole Foods Market on PCH in   Torrance6:30 - 9:00 p.m.  Info: Contact Us

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3)    General News:

 

ICDRC ANNOUNCEMENT – Dr Doctors Bradstreet & Kartzinel:

 

October 6, 2003

Dear Families and Friends,

Drs Bradstreet and Kartzinel would like to clarify some points brought out during the DAN! conference regarding a recent event, where local government agents confiscated some of our computers (which were returned) and research material (which may not be returned).  Let us assure you that there have never been any allegations associated with any of our actions.

In
Florida, anyone can make a claim (truthful or not) which requires the government to investigate. Next, it is business as usual here and we are seeing patients as normal.  Finally, our legal defense team has asked us to be very general in our explanations of this matter, but we will share more details with you as we are permitted.

We would greatly appreciate your prayers of quick resolution of this matter.  Your support has been and continues to be treasured by our entire staff! In due time we will share all the interesting details with you.

Dr. Jeff Bradstreet
Dr. Jerry Kartzinel
Scott Smith PA-C

 

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Announcement from Dr Rimland from the Autism Research Institute

www.autism.com/ari

Subject: U.S. Senate Bill S.722 must be defeated!

 

The Food and Drug Administration (FDA) falsely claims there are no effective treatments for autism, despite the thousands of parents and physicians who can document great improvements in autistic children who have been given various perfectly safe nutritional supplements.  There are, for example, twenty research studies on vitamin B6 and magnesium, published by researchers in six countries, which show significant improvement and no harm, in autistic children given B6 and magnesium.

 

The FDA has for decades tried to suppress your right to purchase and use vitamins, so that you will be compelled to purchase harmful and expensive prescription drugs instead.

 

Please read the letter from the American Association for Health Freedom located at www.autism.com/SenateBill, and then write, phone, and/or visit your U.S. Senators to urge them to vote against Senate Bill S. 722 ("the Dietary Supplement Safety Act").  A suggested form letter to write to your Senator and the names and phone numbers of all U.S. Senators is also located at this website.

 

If this bill becomes law, say goodbye to your right to help your child and yourself with nutritional supplements.

 

Bernard Rimland, Ph.D.

Director

Autism Research Institute

 

 

Join us for a special event – Dr. Rimland at the TACA San Diego Meeting:

Talk About Curing Autism (TACA)- San Diego

Monthly Support Group & Training for Parents & Professionals

Tuesday evening, October 28, 2003
6:30-9:00 p.m.


A Very Special Presentation by

Dr. Bernard Rimland

What Research Tells Us About the Cause
and Treatment of Autism

The founder and director of the Autism Research Institute, Dr. Rimland is an internationally recognized authority on autism and the father of a high functioning autistic son.  Dr. Rimland is the author of the prize-winning book Infantile Autism and the founder of the Autism Society of America and the Defeat Autism Now! (DAN!) Program.  He served as chief technical advisor on the film Rain Man.  He has earned many awards for his work.


Mission Valley Public Library
Community Room
2123 Fenton Parkway
San Diego, CA 92108
(Next to Ikea-see directions below)

TACA-San Diego is a parent training and support group addressing the issues of younger children on the autistic spectrum.  We have an affiliated Internet group called autisminterventionsocal; it's a very active and proactive list for parents of children with autism living in Southern California.  Please note that this is a parents-only list.  To join, email Lisa Ackerman at tacanow@cox.net


Directions to
Mission Valley Library:  2123 Fenton Parkway  San Diego, 92108
From I-15, exit west on
Friars Road and travel west towards Qualcomm Stadium.  Turn left at the second stoplight after the stadium (just past Costco) onto Fenton Parkway.  Take Fenton Parkway south, past stoplight.  Turn left into the parking lot towards the Ikea store.  The library is just east of Ikea.  Please park in the shopping center lot, leaving library parking for library users.

We have no affiliation with the library, so please do not contact them regarding our group.
Sorry, childcare is not offered at this time.

Special thanks to CHERRI for making this event happen!  And Dr. Rimland for making our lives better!

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4)    VACCINE NEWS

 

Safe Minds Analysis of Denmark Data Finds Dramatic Drop in Autism Rates After Thimerosal Removal from Vaccines, Finds Flaw in Study Appearing in JAMA, Invalidating its Conclusions

Analysis provides further substantiation of role of thimerosal in autism, sheds more light on vaccine conflicts of interest

A newly released analysis of autism registry data from Denmark by Safe Minds, a non-profit autism organization, shows that the rate of autism declined from an incidence of 1 in 500 prior to 1992 to 1 in 1,500 today.  This decline in the incidence of autism follows the removal of thimerosal from infant vaccines in that country in 1992. The analysis also uncovered a flaw in the methodology of Danish investigators publishing in the October issue of JAMA (Hviid et al), who utilized the same Danish registry data and concluded that autism rates in
Denmark rose after thimerosal removal from vaccines.

"In our review of the Danish data we identified a flaw which resulted in a substantial loss of autism case records from the registry which essentially renders the findings from the JAMA study by Hviid and colleagues invalid", said Sallie Bernard, executive director of Safe Minds. "The registry allows 10-25% of diagnosed autism cases to be lost from its records each year. The effect of this loss is such that the records will disappear from older age groups to a much greater degree than from younger age groups in any given registry year."

The Hviid findings are based on finding fewer older children in their 2000 registry cohort than younger ones. Since the older children received thimerosal vaccines and the younger ones did not, Hviid falsely concluded that thimerosal is not a factor in autism. The Safe Minds analysis shows instead that the decline is likely due to the loss of records of older children from the registry records, rather than a true decline in autism rates in the older group.

Safe Minds reanalyzed the
Denmark registry data and used an alternative method to avoid the record removal bias. The analysis looked at same-age children - 5-9 year olds - but from different registry years: 1992, when all of the children received thimerosal-containing vaccines, and 2002, when none of the children received vaccines with thimerosal.  After adjusting for the lack of outpatient records in the 1992 registry, the analysis found a 2.3 higher number of autism cases among the 1992 thimerosal-exposed group relative to the 2002 non-exposed group.

The analysis then determined an autism incidence rate for the non-thimerosal group of 1 in 1,500, while the thimerosal-exposed group had an incidence of 1 in 500, a 3-fold increase. The higher figure is comparable to the 1 in 500 incidence level for core autism recently found in
England and the 1 in 250 incidence level recently calculated for the US. The thimerosal exposure level and timing in pre-1992 Denmark was comparable to that in England, while that for the US was somewhat more aggressive.

The Safe Minds analysis also revealed how small shifts in study design using the
Denmark data can result in large changes to the results.  The volatility stems from the many changes that the data set has gone through in the past decade. This makes the data set especially prone to possible bias.

"In the Hviid study in JAMA we can clearly see how the data was misinterpreted so a conclusion could be drawn to clear thimerosal from any role in autism," said Lyn Redwood, president of Safe Minds. "This misinterpretation is not surprising given the authors' employment with the manufacturer and promoter of vaccines in
Denmark, Statens Serum Institut. This conflict of interest should have been stated by JAMA."

Safe Minds is calling for a complete analysis of the
Denmark autism registry data set by independent, unbiased epidemiologists who have no involvement in vaccine development, production, promotion, or administration.

The complete Safe Minds analysis is available at www.safeminds.org .

 

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5)  TACA FAMILIES – WE NEED TO HEAR FROM YOU!

 

Occasionally, we ask TACA families to provide feedback that will assist in making TACA a more valuable resource. Please take a minute to respond (tacanow@cox.net). Thank you.

 

1.       How did you hear about TACA?

2.                 What TACA location are you associated with?

3.                 How many TACA meetings have you attended?

4.                 Why do you attend TACA meetings?

5.                 What facet of TACA provides the most value?

 

Please send the answers to TACANOW@COX.NET with the email subject line: TACA SURVEY!


Thank you for taking the time!  We appreciate it!

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6)  Picky Kids, Eating, And Autism

    Creative ways to get your child to eat healthy foods

 

By: Lisa Ackerman

 

Getting healthy nutrition in the bellies of babes is often the discussion, angst, and battle for many parents. Ask the parent with an autistic or special needs child about nutrition and their child and the response of groans of desperation and exasperation often prevail.  Good nutrition and autism children rarely go hand in hand.  Often, parents give up and pick their battles elsewhere.

 

Autism affects each child uniquely.  In some autistic children, sensory issues can make introducing new and nutritious foods extremely hard for parents and professionals.  If that wasn’t complicated enough – dealing with children who like “sameness” and routines even when it comes to the food they eat each day provides another interesting challenge.  Oral sensitivity issues can also make this difficult situation worse. And for some children, well, they can just be picky.

 

For my family, the eating healthy battle was no different.  Cajoling, airplane noises, dancing with spoons, creative food presentations, threats of starvation, friends eating the healthy food, parents eating the healthy food, more cajoling and dancing would not budge my autistic son Jeff to eat a new healthy food. The “one bite rule” was more a joke for Jeff and not even remotely an accepted policy!  He was the most sly kid I ever met with no desire to change and reluctant to fall for any of our efforts.  Variety when it came to food was the last thing in the world he wanted to venture into.  And for me, it was a constant point of frustration.  Each step of the way towards Jeff eating a new food meant another defeat for mom.

 

I knew there had to be another way.  And for my child’s health sake, I had to find it.  To find a solution, first I had to look back.

 

Early on, our son Jeff used to eat anything you put on his high chair tray and then some.  He was a healthy eater and not picky when it came to food.  Food was food and all foods were his friend.  Fast forward to after two years of age, Jeff selected down to only six foods – all very unhealthy including: French fries, peanut butter & jelly sandwiches, Tigers Milk bars, Burger King chicken nuggets only, and ½ gallon of milk every day.  Nothing resembling good nutrition made it past his lips.  He was a carbo- loading, milk loving, sugar junkie eating child.  Even a stressed out parent with a crying, hungry kid knew this was wrong.  So what happened?

 

Jeff was diagnosed with Autism about six months following his food de-selection time period, leading to some clues of why we were having so much difficulty.  After much research, in-home behavioral based programs, speech and occupational therapy began.  Beginning biomedical intervention also started in hopes of improving Jeff’s health.  Included in this intervention plan was the implementation of a Gluten Free/Casein free (GFCF) diet. Going dye-free and offering organic food replacements became part of Jeff’s daily food repertoire.  New allergies also came forward in the form of eggs, yeast and soy where Jeff’s allergy panels tested high and these were completely avoided.

 

After introducing the GFCF diet in January 2000, we were able to change his diet and hide some nutrition in mini-meat loaves (in all organic meat varieties), cookies, and the ever versatile muffin.  Out went the Burger King nuggets and various other unhealthy foods and enter the better, nutritious, organic foods. This took months to master and be successful and mom finally prevailed!  At last!  A victory!

 

During this process, some nutrition, including fruits and vegetables, made their way into Jeff’s stomach, but not in their “natural” recognizable form.  It was always buried in another tried and true food for Jeff and resembled nothing like a piece of fruit or a side of vegetables.  Rather, everything I served him looked like a chicken nugget (without the deep frying).  He could eat like this forever, but I was getting bored with his choices!  Where was the variety?  How would he ever eat if I did not bring food wherever we went?  I had to take another step forward.

 

To introduce the new foods, I went back to the dancing and cajoling again, to no avail.  The one bite rule again was met with a stone-faced child.  Enter a new problem – oral sensitivity.  Jeff was so sensitive to foods, tastes, and textures that if you ate the foods sitting directly next to Jeff – he would gag.  The smells, textures of the food and general vicinity of the food was just too much for him to handle.  Time to try something new …again.

 

Working with Jeff’s behavioral therapy team (using Applied Behavioral Analysis principles) and occupational therapists together, we developed a plan to get Jeff to eat new, natural foods in their natural form.  This entire process took six months, but the efforts have paid off.

 

We started with a list of foods I wanted Jeff to eat.  The list included items such as: peas, corn, watermelon, bananas, pears, applesauce, and fruit leathers.

 

To get Jeff to cooperate with the new foods, we had to introduce them slowly into his environment. This was a painstaking process but netted good results.

 

We took the long road in getting Jeff used to foods by following these steps:

 

1)  You eat the food next to the child and comment “this ___ is yummy.” (It was important to make sure you had his attention and observed you eating the new food.)

2)   A friend of the child or a highly reinforcing person eats the food next to the child comments “this ___ is yummy.” (Again, it is important to gain attention on this step and all others.)

3)   In home therapy time, school, and down time, have the therapists/parents take a picture of the desired food and talk about it.  Do therapy or sort foods into similar categories.  We moved from pictures to actual whole bananas and other fruits into his therapy and play activities.  (Remember when mom said “don’t play with your food”?  Well, forget about that!)

4)    We then put a small amount of the food on a separate plate NEXT to your child’s plate.  Point to it and discuss.  Eat a few off the plate and comment “this ___ is yummy.”

5)   The big step:  put the food on your child’s plate.  He/she does NOT eat the food, but has to tolerate the food being on the plate.  Tell your child “you don’t have to eat the ____. It just needs to be on your plate during your meal.”

6)   Next big step:  put the same food on your child’s plate and during the meal your child needs to TOUCH the food.  Tell your child “you don’t have to eat the ____, it just needs to be touched with a finger during your meal.”

7)    Getting really big step:  put the same food on your child’s plate and during the meal your child needs to PICK UP the food.  Tell your child “you don’t have to eat the ____, it just needs to be PICKED UP ONCE during your meal.”

8)   Now we are moving:  put the same food on your child’s plate and during the meal your child needs to PICK UP AND PUT THE FOOD ON THE LIPS.  Tell your child “you don’t have to eat the ____, it just needs to be PICKED UP AND PUT ON THE LIPS during your meal.”

9)    Guess what – the next step includes the dreaded tongue!  Put the same food on your child’s plate and during the meal your child needs to PICK UP AND PUT THE FOOD ON THE TONGUE.  Tell your child “you don’t have to eat the ____, it just needs to be PICKED UP AND PUT ON THE TONGUE during your meal.”

10)  Last step – the holy grail:  PUTTING THE SMALLEST PIECE in the mouth and finally swallowing the food.

11) Note, it is highly possible little chewing happens the first go-around.  Work with your child to chew as the final step!

 

Note:  introducing the first food choice – peas -- was the hardest.  All other new foods were introduced in a much shorter period of time.  Now food introductions can be done in an accelerated day or so.  Some foods such as carrots have never succeeded, but others are getting added on a weekly basis.

 

Some children are observed avoiding foods they are highly allergic to.  If you feel this is an issue for your child, it is recommended to obtain an allergy panel on your child.  However, for many kids food avoidance is food avoidance due to behaviors and sensitivities.

 

For Jeff, working with some good professionals in the area of behavioral intervention, speech, occupational therapy rounded out the teamwork approach to getting him to eat real food, control behaviors and make amazing gains.  For all parents with special needs or just plain picky kids, this team approach will help make a difficult situation move in the right direction.

 

By the end of the six month period, we had Jeff eating from the new, healthy food list including:  organic hamburger meats and sausage, a new, healthier variation of chicken nuggets, as well as lots of real fruits and vegetables in their natural form!  Looking back, the process was long, but worth it.  While I realize Jeff could have just come to the conclusion himself or the therapies could be paying off – it doesn’t matter – he is eating a healthier variety of foods.

 

Eating outside the home, while still preserving the GFCF, organic, dye-free, allergy-free healthy diet principles, is now possible and enjoyable. Jeff now has some favorite restaurants, we can go to family gatherings without a cooler (with a little education to our families about Jeff’s dietary restrictions), and mom gets a break from cooking now and again.  Here’s to solving your picky child syndrome!

 

Resources:

Applied Behavioral Analysis                    www.lovaas.com Lovaas web site (Founder of ABA)

Speech & Oral Issues:                           www.apraxia-kids.com A resource for speech issues

Sensory Related Issues                          http://www.sensoryresources.com and
http://www.out-of-sync-child.com

Autism information:                                www.autism.com/ari

GFCF Diet & healthy diets:                     www.gfcfdiet.com  / www.feingold.com

Author & Support Group Information       www.tacanow.org

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7) Need more support?  Introducing 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.

 

Date:            Tuesday, October 28
Time:                   
9:00am – 10:30am

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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8)  CONFERENCES IN SOUTHERN CALIFORNIA:

 

Children's Hospital in San Diego is hosting Tony Attwood on Oct. 15 from 8:30-3:30.
Making Friends and Managing Feelings: Asperger's Syndrome & High Functioning Autism. The cost is $120 ($100 for early reg.).

For more information, check the website:  www.chsd.org/autism

Location:  Children’s Hospital of San Diego

 

Challenging Behaviors in Autism: II
October 25, 2003
9 a.m. - 1 p.m. - Lake Avenue Church, 393 N. Lake Ave., Rm. 203, Pasadena

Pasadena Child Development Associates is holding a one-day workshop on floortime strategies to support appropriate behavior. This is a continuation of a discussion of challenging behaviors presented in Part 1 from June 2003.
Topics to be addressed:

  • How to play with non-verbal children to gain joint attention
  • Using play for rehearsal, role playing and practice.
  • Using sensory modalities, including music, to regulate arousal and behavior.
  • How to support a child when distressed.
  • Use of social stories.
  • How to decrease perseverative behavior.
  • Sleep issues.

Cost $50.  For questions, please call Cambria at 626.793.7350.  A copy of the registration form will be available through your CSC or Facility Liaison.

http://www.mailermailer.com/x?u=6452565d-56539404

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Jay Nolan – Journey to Solutions 2003

Friday November 14 – 16, 2003Pasadena Conference Center

Location: 300 East Green Street, Pasadena 91101

Hear about the most current information and research on autism spectrum disorder.  Topics include: Floortime, Behavior, High School Academics, Super Sensory Workshop, Strategies for Successful Inclusion, Visual Strategies to Enhance Language and Promote Early Literacy, Communication Techniques & Therapies, Role of Medication for ASD and much more.

Speakers include:  Sean Barron, Margaret Bauman MD, Teresa Bolick Ph.D., Brenda Bursch Ph.D., Cure Autism Now, Anne Donnellan Ph.D., Barbara Doyle M.S., Gail Gillingham M.S., Esther Hess Ph.D., Paula Kluth Ph.D., Lisa Lewis Ph.D., Rajarshi ‘Tito’ & Soma Mukhopadhay, Jerry Newport, Jamie Ruppmann, Jeffrey Sell Esq., Rosemary White O.T.R., Pamela Wolfeberg Ph.D..

Invited Organizations: California Institute of Technology, National Alliance for Autism Research, MIND Institute, National Institute of Mental Health, National Center on Birth Defects & Developmental Disabilities.  Hosted by the Jay Nolan Community Services, Inc.

For more information (818) 242-9108 or email conference@jaynolan.org

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MAJOR Autism Conference announced for Southern California by CASD.

Location:  Santa MonicaFebruary 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.

______________________________________________________________________

9)  Personal Note:

 

Over this past weekend, I spent some time reading old TACA e-newsletters from the past three years.  Things sure have changed!  The group has grown incredibly and our kids are improving behaviorally, academically and bio-medically.  Jeff is one of those kids.  Regardless of the setbacks which occur 1-3 times a year, Jeff is improving dramatically from the dark days of the pre-diagnosis time period before Autism.

 

This time of year, I always seem to reflect back a bit since this is the anniversary of Jeff’s diagnosis.  On the YAHOO! GROUP Autisminterventionsocal I shared a little bit about my feelings and a review of the past four years since Jeff’s diagnosis.

A lot of has happened since that day in 1999, Jeff has had a lot of things.  For my benefit I have summarized;

-          Lots of ABA hours

-          Many hours of speech & occupational therapy

-          A very special diet: Gluten, casein, soy, egg, yeast free with periods of everything else free

-          Several blood test trips with countless vials to dozens of labs

-          Topical products: secretin, glutathione, magnesium, TTFD, and others

-          Chelation:  TTFD and now EDTA

-          IV Glutathione and a single round of IV Secretin

-          A half dozen yeast treatments

-          Several rounds of Tomatis

-          Supplements & Enzymes:  too many bottles to mention and add up

-          Three neuropsychological assessments

-          Too many doctors appointments to count

-          Non-verbal therapies including PECS (and 3 bazillion pictures from my digital camera and my tired color printer) and lets not forget the Dynavox alternative communication device that gave Jeff words.  He had stopped speaking from January 1998 until June 2001.

-          A QEEG

-          Money spent… well, let’s not go there. (And it does not matter.  What is the amount of the check to write and I will write it for my kids.  Amount please?)

-          and a partridge and a pear tree!

I am sure I forgetting something!  But I have come to a conclusion:  no matter how I feel, Jeff (and all of our kids) work pretty dang hard.  He amazes me with his great attitude, smile, enthusiasm for the next therapists and his love.  This guy is the hardest working guy in show-me business.  He is amazing.

And Glen and I survived a due processing hearing and won.  That should be on there because it was pretty damn stressful.  I am still married…(phew… that was close!) and my college-aged daughter in her junior year still loves me!  

And would I do all these therapies all over again?? YES. Jeff is so far along that I feel blessed.  I feel like hard work DOES pay off and he is in kindergarten with an aide.  I don’t have all the answers but I sure like my life today vs. September 30, 1999 at 2:15 p.m.

So what’s the point?  OK, Newbies and OLBIE parents, we can do this together.  We can get our kids to be pretty dang good.  Our kids are going to shine like brand new pennies because we love and care for them so.  They will be the absolutely best thing they can be.  All our hard work, the fretting, crying, pleading, cajoling, negotiating, smiling when we want to scream WILL pay off.

But here is the good news, the anniversary of autism came and went this year and I did not cry (that is a first time in four years for me).  Must mean life is pretty darn good and Jeff is doing a helluva a lot better.  But our journey is far from over.  But today, I have the strength to keep moving.

God Bless that!

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 759 families