Autism Workshop

The Judevine Center for Autism, through a grant from Lutheran
Foundation of St. Louis, is offering a FREE workshop at Our Savior
Lutheran Church in St. Charles.

All are welcome to attend this informative workshop that will offer
valuable insight into Autism Spectrum Disorders (ASD). This is an
ideal opportunity for parents, grandparents, teachers, extended
family, Sunday school teachers, and others who interact with children
to gain important information about ASD.

Date:
Tuesday, February 3, 2009

Time:
6:00p – 9:00p

Location:
Our Savior Lutheran Church in St. Charles 2800 West Elm Saint
Charles, MO 63301

RSVP:
by January 30, 2009 to Kimberly at kakilen@sbcglobal.net or (636) 447-
3360

Please feel free to forward this information to anyone you know that
may benefit from this seminar (school teachers, Sunday school
teachers, friends, neighbors, co-workers, etc).

MO-FEAT Fundraiser at Whole Foods

Whole Foods in Town and Country is supporting MO-FEAT (Missouri Families for Effective Autism Treatment) with their One Dime at a Time fundraiser for the months of Nov and Dec. Take your own bags and donate your dime bag refund to MO-FEAT.

Details HERE.

Stop by and see the MO-FEAT Autism Information table at the NEW Town & Country Whole Foods store from 11am-2pm on Saturday, December 6 th OR 1pm-4pm on Sunday, December 14 th .

Thanks for helping MO-FEAT One Dime at a Time!

Websites

General Links
4-A Healing (Biomedical treatment for Autism, ADD/ADHD, Allergies and Asthma)
National Association for Child Development
SpecialTEES (t-shirts for people with special needs, allergies, diabetes, etc)
Abundant Life Chiropractic

ADD/ADHD
What is ADD/ADHD?


Allergies and Asthma
AllericChild.com
American Academy of Allergy, Asthma and Immunology
Asthma and Allergy Foundation of America - St. Louis Chapter
Allergy Moms (blog for caretakers of kids with allergies)
Anaphylaxis Table
Binky Goes Nuts: Understanding Peanut Allergies (This is a PBS site. Lots of good info for helping kids understand allergies. Look around, info for other conditions is included as well.)
Epi-Man (A superhero for kids with food allergies as well as an info site on food allergies)
Food Allergy and Anaphylaxis Network
Food Allergy Support (Internet Forum)
How to Use an EpiPen
How A Child Might Describe an Allergic Reaction (a PDF from FAAN)
How to use a TwinJect (page links to a video)
Kids with Food Allergies
PeanutAllergy.com

Autism
Autism Checklist from Judevine
Autism info (from CDC, includes symptoms, redflags, etc)
Autism Resource Institute
Autism Resources
Autism Society of America
Autism Speaks
Autism Speaks First 100 Days Kit
Age of Autism
Diagnostic Criteria for PDD (from CDC)
The IAN Project (Interactive Autism Network - connecting researches with families)
National Autism Association
The Asperger's Store
Mo-FEAT (Missouri Families for Effective Autism Treatment)
Red Flags (from First Signs)
Remediating Autism blog (RDI therapy)
Thompson Center For Autism (Research center at Mizzou)


Celiac Disease
Delphi Forums (Online Support)
Gluten Free Drugs
Gluten Intolerance Group of North America
Gluten Free Guide for Families (PDF)
The Kids Company (Gluten Free site sponsored by kids)

Diabetes
Children with Diabetes
Dealing with Diabetes (PBS resource)

Dietary Intervention
The Official GFCF Diet Support Group Website
Feingold Diet
Feingold Diet Resources
The Specific Carbohydrate Diet™
GFCF Recipes
Gluten Free Resources (links to a post with more links)
The Food Allergy and Anaphylaxis Network
St. Louis Alerts Email Group
(This is an email list for celiacs, but I find it invaluable for local GF info!)
Delphi Forums Celiac Disease On-Line Support Group
Frugal Abundance
(Has a page with GFCF recipes.)

Sensory Processing Disorder
SPD Foundation
The Out-of-Sync Child
Sensory Processing Disorder Resource Center

Vaccines
A User-Friendly Vaccination Schedule
Aborted Fetal Cell Line Products
Generation Rescue Vaccine Information
Global Vaccine Awareness League
Institute for Vaccine Safety
National Network for Immunization Information
National Vaccine Information Center
Think Twice Global Vaccine Institute
Vaccine Information and Awareness

Book Review: Mother Warriors

Another great book on Autism and healing. Jenny tells a little more of her story, goes into the efforts she has been making for more Autism awareness, her efforts to get the AAP to recognize and learn DAN! protocol, etc. She also tells some amazing stories of Autism recovery as well as one tragic story of recovery and loss. She reminds us that Autism is not just a genetic disorder. It is not just a neurological disorder. It is an illness. That these kids are sick. They have so many health issues that can be treated. Kids in pain, kids with infections raging in their bodies, with leaky guts allowing toxins to enter their brains, will exhibit neurological problems. But the body CAN be recovered. They may try to convince us that it is untreatable, but these families are proving them wrong. As they say "come see my science".

Jenny would not have been my first choice for my advocate and spokesperson, but I am still very thankful for all that she is doing for our children and for us. She is doing an amazing job and I pray that it pays off.
(Review written Oct 2008)
As with Louder Than Words, I wish the story could have been told without some of the harsh language and questionable morals. But, I am grateful to her and the other parents for being willing to share their stories.

My favorite quote is at the very beginning of the book:

"All illnesses have some hereditary contribution. Genetics loads the gun and environment pulls the trigger."
- Dr. Francis S. Collins, Director, National Human Genome Research Institute, National Institutes of Health.

Amen. Yes, genetics plays a huge part in Autism, just as it does in all other auto-immune disease. My husband had a genetic disposition toward Diabetes. But something triggered the attack on his pancreas and caused the Diabetes. My daughter had a genetic disposition toward Autism. I see enough minor ASD traits in both my dh and I that there is no way I will deny the genetics. But, the environment pulled the trigger. She was not born Autistic. She was born with the potential to become Autistic. And it's probably thanks to my MILs reaction to the Hep B vax that she is not severely autistic. Because that caused me to refuse to load her up with HIGH dosages of mercury at birth which would have had increased the impact of the environmental bullet.

One environmental impact that I had never considered before was brought to my attention by one of the parents. They mentioned a connection between Herpes 6 virus and autism. Knowing that Jess has fought a mighty battle against a HPV in the form of warts sent me on a research. I wasn't sure what HPV number it was and wanted to see if that was the connection. Nope. HHV-6 is the Herpes virus associated with Roseola. There is a theory that latent Roseola virus in combination with the live viruses in certian vaccines may be one of the causes of the auto immune response. So, not only did my daughter have a measles issue, her case of Roseola, too close to a live vaccine, may have played a part. Too many viruses for the immune system to deal with at the same time. Who knows. All I know is both her case of Roseola and what I am convinced was a mild case of the measles where both horrible experiences.

Here is what the "Warrior Dad" in the book had to say:

Autism is a combination of infections and toxins that can ultimately lead to a neurological breakdown. It could be many types infections: bacterial, fungal, viral...a recent study found children with autism are 16 times likely to have mycoplasma, chlamydia or herpes virus 6. And that's just three of the many infections these kids can have. There are also studies showing that viral infections cause toxic metals to move to the brain. Other studies show that certain commonly undiagnosed bacterial infections in these children's guts can make toxins like mercury even more toxic. - Stan Kurtz.

Parents are recoverying their kids by fighting these infections and viruses. The autism symptoms are dissapearing when these illnesses are cleaned out of the bodies.

I also like the analogy of Autistic kids and the canaries in the coal mine. How their sensitivies to toxins are just a warning to the rest of us. She says:

I look at the older generation right now and and the rise of Alzhiemer's, Parkinson's, MS. Then I look at this young generation and see autism, ADD, ADHD, allergies childhood diabetes, and Tourette's and wonder what our future will look like when my generation grows old. If before us is Alzheimer's and Parkison's and behind us are all of these other diseases and disabilities, shouldn't we be a little worried about what the h--- we're gonna get?

Another thing I noted was that not all of these children regressed at 15-18 months. "Coincidentally", those children who were given their MMR vaccines at earlier ages regressed at earlier ages. One, who was given muliple live vaccines at the age of 6 months became Autistic very early. They try to convince us that we connect autism with vaccines because it just happens to manifest at the same time the MMR comes onto the schedule. How interesting that it manifested at the same time as the shot in all these kids, no matter what age they got the shot. Hmm. And remember, there is NO mercury in live vaccines. This is not a mercury issue. (Mercury and aluminum, etc is a side issue that doesn't help.) This is a viral issue. This is injecting live viruses into a body that may be immune suppressed for one reason or another. Sometimes it is the presence of illness. (Do you know how often doctors "catch up" multiple vax when kids are brought in for a sick visit?"). Sometimes it is a mitochondrial issue. There can be any number of reasons that the body is immune suppressed at the time of the shot, causing the body to be overloaded. I also find it interesting that a lot of these kids (like mine) were developing on time and sometimes ahead of schedule before they regressed. They were very neurotypical up until the time the trigger was pulled.

Jenny also touches the issues of siblings and spouses. Often when a mother is battling to recover her child, she gets tunnel vision and the rest of the family suffers. 80% of families with Autism deal with divorce. Siblings often feel left out in the single minded pursuit of dealing with the Autsim. This is a sad reality. I am fortunate in that my daughter is not severely autistic. I have not been faced with the same battle that many of these parents are dealing with, so I can't put myself in their shoes. But, I came to the conclusion that I must not rank up with the rest of the warriors because while I am very fanatical about doing what I can for my daughter, I am not willing to lose the rest of my family in the process. We are all in this together.

I admire these parents for fighting the battles for their kids. Pulling the toxins out, cleansing out the viruses, the bacteria, the yeast that is so prevalent in our autistic children is not a fun job. Often the symptoms get worse as the infections are moved out of the system. But the reward is great. The stories are awesome.

Of course I always come away from reading these awesome stories of recovery wishing I could afford some of these tests and treatments. There are so many things I want to pursue.

A must read book for parents of children with ASD, for doctors, for everyone. One thing I liked about this book was that at the end, there is a list of resources AND a list of DAN! doctors.

Book Review: Louder Than Words

I made the mistake of starting this book in public! I had to put the book down before I started crying! The first part is heart wrenching. I do highly recommend this book to everyone. Those with ASD kids and those without. Just take a box of tissue, be prepared for some bad language and realize she isn't a Christian. I would have rather she didn't include the language and I didn't agree with all her beliefs and the tarot card thing, though spooky cool in a way, was not my favorite part of the book.

Beyond that, she is a great voice for ASD. I hope that her voice is heard and it brings some attention to ASD and treatments that work! The book is short and easy to read (well, other than the language and the heart wrenching stuff!). I hope that it helps those with an ASD child to relate and to maybe find some support and answers. For those that don't, maybe it will help them be just a little bit more understanding of what those of us who do go through.

Jenny tells the story of how she came to find that her son had Autism, how she fought like crazy to get him help and their journey to healing. Her journey is different than mine, her son was much more severely autistic and we, thankfully, never had to deal with seizures, but I could relate. She is candid about the struggles and how hard it is. But, I know that this book only scratches the surface of how incredibly hard the struggle was for them. Especially with the new treatments and the detox and die-off and withdrawal symptoms. She mentions it, but not in great detail.

Some quotes I want to share:

"When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support. When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle." -David Feinberg

"Figure out the cause for all your kid's issues, and don't settle for the doctor's Band-Aid. " and
"...don't give up hope, and remember that acceptance of your child's condition does not mean giving up..."

Amen. She talks about how it's our job to find out why our kids are having problems and how we can fix the problems. That behavioral issues in ASD children are often caused by major health issues and pain! She does say that not all treatments will help all kids. She never claims to have all the answers. But that we need to advocate for our children and be willing to never give up.

I also SO related to the part about finally telling her son to be quiet for 5 minutes! I remember that. I remember needing to tell my now verbal child to be quiet and yet feeling bad because it hadn't been that long ago that she hadn't been able to talk. I also remember the ST saying it was not her job to get her to be quiet, it was her job to get her to talk. LOL

She also goes into the huge cost of autism treatment, and the lack of funds. How the rate of autism is growing so much and yet the funds are not there, compared to other diseases with lower rates. The medical community needs to wake up.
The back of the book has some great resources. She calls it her "I am sorry your child has Autism, here's what to do now." pamphlet. The one no one handed her. There are some sites that I didn't know about and have now bookmarked. Some great resources.

I was expecting more of a technical book. I guess something like Children with Starving Brains. Something to help guide me through our new journey of biomedicine. That is not what this book was. Thought it did direct me to some things that might do that and I think I may need to reread the Starving Brains book. It is a story of a mom who has walked the path of having an autistic child and who's desire is to help us find our way toward pulling our kids through the "window" and out of their autistic world.
(Review written Nov 2007)

Book Review: Healing the New Childhood Epidemics

I found this to be a very informative book. It was well written so that it really delved into quite a bit of information and yet was easy enough for a lay person to understand. It presented some of the same information as books such as Children With Starving Brains and What Your Doctor May Not Tell You About Childhood Vaccinations, and yet in a much easier to read format and with a lot more information as well. I especially found all the information about the different parts of the brain and what they do and how they interact very fascinating and helpful. It really helps to understand why certain symptoms manifest in the different disorders.

I also really appreciated the detailed information on the various aspects of the healing program. This is the kind of information I needed to really understand what the various supplements do. I know it was covered in Starving Brains, but it was presented differently here. This is an invaluable resource for anyone using DAN! protocol.

I was surprised to see the section on medications but appreciated his point of view on why they are sometimes useful and necessary, even in conjunction with biomed treatment.

I highly recommend this book to anyone dealing with any of the 4-A disorders (autism, ADHD, Asthma, and allergies) and those who would like to understand biomedical treatment better.

Book Review: Autism and Your Church

This is a resource book for helping set up a ministry for special needs children and adults in the church, specifically in regards to individuals with ASD. It explains some of the challenges associated with ASD and how to work with them to make the worship experience better.

One of the strategies was writing "stories" describing activities and social expectations for different parts of church. It talked about how this might be a help for more than just the people with ASD and I agree. It reminded me of the "bozo buttons" line in the Yada Yada book. About how we often speak in a language that others don't understand and assume that everyone automatically knows how to behave in the church environment. This is not always the case. For example, I have grown up in the church all my life and I have been in many different denominations, and experienced communion in many different ways. And yet we recently had communion in the church I go to Bible Study at and we were all (my whole family of church going Christians) thrown for a loop. We didn't know the procedure at this particular church as it was different than any we had experienced. It would have been nice to have it explained to us first. I ended up not taking communion because it just didn't feel right. There are so many instances where visitors feel out of place because they don't know what is expected and these "stories" would be so helpful.

Anyway, it was a good resource book and it had a list of other resources in the back that would be useful. I think it would be very helpful in helping us to serve those with special needs in our church.
(Review written Nov 2007)

Articles

Watch this page for articles of interest....

Newsweek article on Gluten Free Diet
Interesting article, but I am disappointing that they seem to be trying to discredit its use for non celiacs on the Spectrum.

Helping Your Child With Aspergers Survive the Holiday Season

Tribune investigation prompts stores to pull food items (Dec 20, 2008) (Allergy related)

Heroes: 10 Moms who are changing the face of Autism (Red book)

Vaccinations: Safe or Unsafe? (Baltimore Chronicle and Sentinel) (Jan 26, 2009)

Study Finds High Fructose Corn Syrup Contains Mercury (Jan 26, 2009

St. Louis named Asthma Capital

Missouri Autism Legislation Would Make Insurance Pay (KSKD, March 19, 2009)

Chess and Autism by Karel van Delft