Wednesday, March 25, 2009

Update Update April is Autism Awareness Month

Below is an email I received that I couldn't decide what part of it I wanted to share, so I'm sharing it all. It is a long read, but those of you who come to my site will totally get it. Love to all ~ Gina
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Hi,

Thank you all for participating in the Million Dollar Puzzle to fund badly needed Autism Research. I wanted to give you an update on our progress. Currently we have distributed 3,274 packets (163,700 puzzle pieces) to 48 states (433 cities). We are not yet in Montana or North Dakota – in case you have a contact there! We have forwarded over $59,000 to the Autism Research Institute. But we still have a very l-o-n-g way to go….

April is national Autism Awareness Month and a great time to distribute the Autism Puzzle Pieces. Some of you ordered the puzzle pieces several months ago and have not yet returned any donations. I know that autism (and life in general) can disrupt our best intentions. But I encourage you to make an extra special effort during April. The puzzle pieces are a great way to increase public awareness of the current autism epidemic.

Help us spread the word. Tell other parents in your area about the puzzle campaign and how they can become involved. Just send them to our web site - http://www.autismwebsite.com/autismpuzzlepieces/ If there is any kind of autism event planned in your area during April, contact those organizing it and ask if you might be permitted to distribute the puzzle pieces.

Please know that if you have already distributed the puzzle pieces and sent in the donations you collected, there is still time to order more for April! We will continue this effort until we reach our goal and the puzzle pieces are available year round.

And the Million Dollar Puzzle is now a cause on Facebook. You can direct friends and family there to make online donations.

It will be us, those who care about someone with autism, – not our government - who funds the independent large-scale vaccinated vs. unvaccinated research study. We will fund the research to explain why some children respond well to biomedical treatments and others do not. ARI is committed to fund these studies.

Many, many thanks to all of you for keeping Dr. Rimland’s dream alive - to Defeat Autism Now! Together we can and will do just that.

Hugs,
Lynda

P.S. In case you have not seen the video of the beautiful “Missing Pieces” sung by Mark Leland, be sure to go to

http://www.youtube.com/watch?v=hhScvPYXunc

Mark is a member of the Million Dollar Puzzle Committee.

Let me tell you a little about the song. Mark co-wrote “Missing Pieces” with a local single dad, Tim Calhoun. The song tells of Tim’s son Nathaniel’s tragic decent into the abyss of autism at around 18 months of age and the child’s miraculous recovery through newly developed biomedical treatments. It is hoped that the song will increase awareness of the current Autism Epidemic, which not affects 1 in 150 births. Parents need to know that recovery is possible!
“Missing Pieces” - The Story Behind the Song
By Tim Calhoun

On December 11, 1999 my youngest son, Nathaniel, came into this world, a perfectly normal beautiful gift from God. With pride I watched him meet all the normal developmental milestones. By eighteen months of age he was naming TV shows and calling his brothers and sisters by name. But he was also becoming a constantly sick child, going to the doctor two to three times every week. There were unending fevers, ear infections, and colds. He cried constantly, had a bloated stomach and continually covered his ears with his hands. Shortly after receiving the MMR his left eyelid began to droop and his language disappeared. He no longer made eye contact, could not attend to any task, and developed many typical autistic behaviors. Local doctors finally recommended a psychological exam at age three. The psychologist was the first to mention the “A” word. A team examination at the University of Arkansas Children’s Hospital in 2003 resulted in the official diagnosis of Autism.

When Nathaniel was three I became a single parent with sole custody of my son. He was making no progress in Pre-K. I was desperate to find help for my son. Through the Internet I located the NE LA Autism Society and arranged a meeting with Lynda Huggins. I was literally in tears as I asked how I could help my son. After discussing Nathaniel’s history Lynda urged me to take my son to a DAN! doctor. She told me about an upcoming Mini-DAN conference in New Orleans. I attended and met Dr. Stephanie Cave, a DAN! Practitioner from Baton Rouge. She agreed to see Nathaniel. In February of 2004 Dr. Cave did extensive testing on Nathaniel, prescribed several daily supplements and said that I should put him on a Gluten-free, Casein-free diet immediately. Within days of starting the diet there was improvement and school reports reflected progress. In April, when test results were completed, Dr. Cave started Nathaniel on a chelation regiment. For many months, it was not an easy or pleasant experience for either Nathaniel or me. I had to literally hold him down to get the pills down his throat. But the progress I saw motivated me to follow Dr. Cave’s instructions to the letter.

I was attending monthly meetings of the local autism support group and began to feel that I was not alone in this battle. When I mentioned my lack of success with potty training, the group suggested the wonderful book/video & bear entitled “It’s Potty Time”. Amazingly after watching the video and reading the book, Nathaniel trained himself within one day! I captured his joy at success with a Polaroid camera and that picture served as a reinforcement, which he took with him to school. I began to realize the communication power of pictures! Since Nathaniel could not express his needs or desires verbally, I cut pictures from magazines for him to show me what he wanted to eat, to do, etc. Within a few months, his language began to return. It was as if he picked up right where he lost his words. His first clear complete phrase was “I love you Daddy” - what a wonderful reward for the months of special diet and lots of pills! School reports included “speaking more and more.” By the end of that school year the school reported “You need no progress report to tell you how well Nathaniel is progressing.”

Imagine not having the ability to express your likes or dislikes, your fears or joys, what you do or do not want to do. How frustrating it must have been for my son. But he found ways to get his point across – like throwing three pairs of new shoes (which he obviously did not like) out the car window as he traveled in his car seat behind me. He traveled with me during the summer months and once stripped butt naked in the middle of a business meeting at a fancy restaurant. During our travels he knew exactly where he had visited a Toys ‘R Us store - months earlier and pointed excitedly as we approached the correct exit. He had so much to tell me – but could not speak the words. And there were many humorous times. He decided the Blues Clues potty seat resembled a hat and a hacksaw was required to remove it from his head. The noise of my windshield wipers was evidently painful to his ears so he simply removed them (with a screwdriver) and hid them from me. Yes he found ways to tell me many things.

This past December Nathaniel celebrated his sixth birthday. You could not have picked him out of the group of kids as a child with autism. He was just a normal 6-year-old joyously tearing into gifts, eating lots of pizza and cake and playing appropriately.

Throughout the past three years I have been blessed with wonderful support from family and friends and the skilled medical guidance of Dr. Cave. Nathaniel’s grandmothers have followed my every direction for diet and pills and each instruction for working with him. In the last two years (and since six weeks after beginning chelation), Nathaniel has had only one doctor visit. That was for the removal of his tonsils. That doctor voiced his opinion that Nathaniel’s droopy left eyelid might have resulted from a minor stroke (at around age 18 months).

There were many stressful times. It was especially difficult as a single parent to hold a job requiring extensive travel, arrange all the doctor visits, follow all the doctor’s instructions, and endure the bizarre behaviors. Many times I felt that I was at my rope’s end. After one particularly long and exhausting day, when I finally got Nathaniel down for the night, I sat down and began to write. The words that flowed from my mind that night – “Now I lay him down to sleep, I pray Dear Lord my son could speak” - surely came from above. As I thought about what I had written I decided to contact my life-long friend and recording artist, Mark Leland. Together we expanded upon those words to write the song “Missing Pieces”.

These many months later as we are completing a video of “Missing Pieces” I know that God has led me through this experience for a purpose. It is my hope and prayer that the song will generate funding to assist families in obtaining the biomedical treatments that can help these children. My miracle son is proof that recovery is possible. The song tells of the pain of watching a child slip into the autism abyss and of a parent’s determination to pull him back. Now I know there are so many more like Nathaniel who need our help to win this war. Together we can help them make it through. The missing piece is me and you.
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Monday, March 9, 2009

We are all FANTASTIC!

This is what I got for you today. Know any teenage girls that the doctor recommends Gardasil.

Gardasil report:
Michigan teen suffers severe reaction two months after GardasilT shot
Reports about illnesses and deaths after vaccination with GardasilT, the HPV vaccine marketed by Merck, continue. More and more people are questioning this "cervical cancer" vaccine that has not been shown to prevent cervical cancer. The research is hypothetical. More people are saying the cure is worse than the disease. And now they want to give this vaccine to boys? Send this video to anyone you know who may be considering getting this shot. Go to: http://www.youtube.com/watch?v=CkpT_OrHIoI&feature=email

Monday, March 2, 2009

Update - How much fun????

Well, since we took Mister to the neurologist, we've had an EEG that we haven't received the results on YET. We also had a Chromosomal Microarray and Fragile X labs done.

Fragile X - Negative (whew)
Chromosomal Microarray - Showed a deletion in chromosome 12, short arm. Dr. has ordered both Mike and I for the same test to determine if either of us are carriers.

http://www.biology-online.org/dictionary/Chromosome_12

I know you guys can see where I'm going with this. . .

If you don't get it, here it goes. Since I have sooo many nephews with ASD symptoms (most not diagnosed but some yes) Because of their ages, their diagnosis are mainly ADHD. I have one nephew who is very severe but that particular family thinks I've fallen and hit my head that he's just the way he is and are not willing to help him get better because their doctors (phychologists) don't believe there is treatment. I HAVE PROVEN THEM WRONG!

So, since my family along with my extended family has these issues, I'm hoping that after having scientific information showing a connection, that maybe, JUST MAYBE, they will start to listen to me and start eating organic, gluten free/casein free. There are tests that your doctors can do that insurance WILL PAY FOR. You just have to know what tests to ask for.

1. Chromosomal Microarray (blood draw)
2. Food Sensitivity (IgG)(blood draw)
3. Amino Acid Panel (urine)
4. Metal Toxicity (urine)

Yet another child has been justified in vaccine court. Please read. If you or any of your loved ones plan on having more children (and especially if you are in my family), read this article from the Huffington Post. Robert Kennedy Jr. is yet another savior.

http://nationalautismassociation.org/press022609a.php

http://www.huffingtonpost.com/robert-f-kennedy-jr-and-david-kirby/vaccine-court-autism-deba_b_169673.html

Happy Reading. Please call if you have any questions. I just don't want to see another child injured.

Love to all,
Gina

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