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The Huffington Post | Latest News

Read it yourselves, guys!

Action Alert from the National Autism Association

NAA ACTION ALERT:

Many parents are concerned about ABC's coverage of the autism-mercury issue. If you are unhappy with last night's news package, The National Autism Association encourages you to let them know.

During last night's coverage:

• No Scientist, Researcher or Doctor familiar with the connection between autism and thimerosal was interviewed.
• Author David Kirby was not interviewed.Lyn Redwood's credentials were not disclosed.
• ABC's Timothy Johnson gave a one-sided commentary that championed the IOM and CDC all while endorsing the use of thimerosal in vaccines.
• Johnson ridiculed RFK, yet readily accepted CDC's position on the issue.
• The CDC said there is no cover-up and Johnson took them at their word without further research.
• ABC followed this story with a package about high-sugar cereals and how bad it may be for children, yet they favored the use of a bloodstream-bound neurotoxin.We suggest that the entire autism and developmental-delay community flood ABC with faxes.

Do a one-page letter about your child's mercury poisoning symptoms, the regression, etc. and if you have it, include a second page that is his/her worst chelation results. We also suggest that you send a copy to other people in the media. Please make your letters as firm as you wish, but refrain from using what may be perceived as threatening or harassing words.

Brian Williams said Tuesday on Imus in the Morning that NBC is going to look into this again. We think he needs to get copies of everything we send to ABC! The media needs to be reminded that Autism is mercury poisoning.

The CDC and FDA are in the indefensible position of saying excess mercury does not cause mercury poisoning. Let's show them what a bunch of determined parents wanting the truth for their children can do!

Fax number of ABC:

Tim Johnson, (212) 456-5962
Charles Gibson, (212) 456-7290
Fax number of NBC Nightly News: (212) 664-6044

If you want to help and send a third fax, please send a copy of your letter and chelation results to Senator Enzi. Senator Rick Santorum announced today on Imus in the Morning that Senator Enzi is beginning investigations on Capital Hill. Senator Enzi's staff need to hear your story, your thanks for opening an investigation, and see the results of your child's chelation proving heavy-metal toxicity.

Senator Enzi's fax: (202) 228-0359

Thank you!
The National Autism Association Team

P.S. Vote RFK, Jr. ABC's Person of the week! Go to this ink: http://abcnews.go.com/WNT/PersonOfWeek/

Complete Contact information if you want to contact them in other ways:
Anchor; Managing Editor NBC Nightly News with Brian Williams
E-mail: brian.williams@nbc.com
Phone: (212) 664-4691
Fax: (212) 664-6044

Senator Michael Enzi, 379A Russell Senate Office Building, Washington, D.C. 20510-5004
Phone: (202) 224-3424 Fax: (202) 228-0359

Timothy Johnson, ABC Medical Editor and Commentator, Phone: (212) 456-1000,
Fax: (212) 456-5962

Charles Gibson, ABC Co-Anchor, Good Morning AmericaPhone: (212) 456-5990,
Fax: (212) 456-7290

Think Autism. Think Cure.

Kelly's Response to ABC's World New Tonight Report on Autism from June 22nd, 2005

From a letter to ABC regarding "A Closer Look" on autism and Robert Kennedy's accusations about thimerosol and autism:

How extremely discouraged and disappointed I was with the very obviously skewed report on Robert Kennedy, Jr.'s quest to bring out the truth about vaccines and autism.

EVEN if you were afraid to tick off pharmaceutical advertisers, which it was so heartbreakingly apparent in that report that you are, you couldn't have simply suggested that parents request thimerosal-free vaccine and spare parents from the pain of autism and other developmental disorders?. Why would any sane-minded parent not do otherwise? And yet, your coverage seems to call parents like myself, who spend hours and hours in research a day, idiots. Do you think we WANT to believe thimerosal and mercury have permanently damaged our children? Do you think we would push this way just for fun? No, we want answers....and we will NOT stop until we get them.

If there is the SLIGHTEST question about thimerosal's safety, why not remove it from the shelves? Isn't this a no-brainer question that any middle-school reporter would ask? What are you so afraid of? The truth will come out...it always does, and how will you look back on your coverage? Will you be proud? How much faith will the public then put in your news stories? If the audience declines, so do the advertising bucks.

ABC, aren't you journalists? Provides of the finest news coverage available? Or are you simply a servant to the pharmaceutical dollars? Your actions will prove the true answer to that question. Just take a look at how NBC is handling that same story! (Readers can go to http://www.msnbc.msn.com/id/8243264/) Aren't you a bit ashamed?

Kelly and Matt Langston
Parents of Alec ....

MSNBC - Scarborough Country Front Page

MSNBC - Scarborough Country Front Page

A coverup for a cause of Autism? Scarborough and RFK Jr. discuss how an ingredient in vaccines may have contributed to thousands of cases.

Kelly's comment: Bravo for RFK, Jr! I have long been wondering WHEN someone would be brave enough to stand up in the face of lobbyists, scared governmental forces and the pharmaceutical powers to defend our children, get mercury off the the shelves and give tired, battle-weary parents some answers. Let's hope this story MOVES.

Watch the Montel Williams Show Today on Autism and the Mercury "Secret"

Montel Williams: "AUTISM...CAN IT BE PREVENTED?

"Autism is a developmental disorder typically appearing in a child by their third year. Heredity, or genetics, is considered one of the main causes for the disease, however no specific gene has been linked to autism. Today, we'll meet parents of autistic children who say there's another cause that has been kept in the dark: mercury. Since the 1920s, a small percentage of mercury has been added to vaccines as a preservative. In the 80s and 90s, the number of vaccines given to babies and children has increased - so has the number of children diagnosed with autism. "

ABC Trashes Robert Kennedy Story on Mercury

Robert Kennedy Jr.'s scheduled appearances on ABC World News Tonight, 20/20 and his Thursday, June 16th appearance on Good Morning America have been cancelled by ABC. Officials at ABC stated their decision to cancel Mr. Kennedy's appearance on their network is because it is "too politically controversial."

My guess is that ABC is concerned about protecting huge advertising revenues from the pharmaceutical industry than reporting news that could protect pregnant women, infants and children from mercury tainted vaccines. I agree with the Advocates for Children's Health Affected by Mercury Poisoning: SHAME ON ABC! Let ABC know how you feel! Contact them at :

netaudr@abc.com

Let's attach pictures of our KIDS, so they can see the actual faces of the kids they have disregarded in this decision!!

RollingStone.com: Deadly Immunity : Politics

RollingStone.com: Deadly Immunity : Politics

In the current issue of Rolling Stone Magazine: Robert F. Kennedy Jr. investigates the government cover-up of a mercury/autism scandal

Letting Go

My 5 year old daughter Elise is taking swimming lessons at our community pool this summer. Our routine has been to hastily wake up my kids, feed them, pull on their bathing suits and hustle out the door. I'm typically a few minutes late, but we get there.

Alec will be 4 on July 11th. I watch the other beginners classes splashing around the pool, listening to their moms oooh and ah over each new feat, blowing bubbles in the water, kicking their legs behind them. And I am envious.

Alec typically plays in the kiddy pool. I would like to have him enrolled in a class, too, but I don't think he can understand the language enough, and he is so timid in the water. He loves the baby pool, but when he is in the "big pool", he holds on like a clamp.

Today, a mother sitting next to me was watching her child, six months older than Alec, on the "Shrimpers" swim team. Watching her son swim, she said, "Isn't it remarkable that a 4 year old can do so well?"

Yes, it was. Being around other neurotypical kids is hard sometimes. It's hard not to compare. I see so much improvement in Alec, and I am so amazed by it...until I see a child very close Alec's age and I realize how long the road is ahead of us.

I think I received a special blessing today, after that comment from the mom at the pool.

Alec wanted to swim in the "big pool" today. Of course, that means splashing on the steps or holding onto me for dear life as I walk him around.

But today, Elise brought up his little arm floats (we call them "floaties") and to my surprise, Alec put them on. (Last year, he would have nothing to do with putting anything like that on his arms.)

So, I took Alec out into the water. There were a zillion kids, all happy, splashing and quite loud around us. Enough to terrorize a kid with a sensory integration disorder, and it even made me anxious at times. But out we went.

For a while, Alec just held on tightly. "Give me a hug!", he would keep saying. But then, after a bit, I balanced him on my knee. After more time, I had him grab only my hands. With each move towards independence, there was a look of terror on his face. But each time he succeeded in letting go, I saw a moment of timid joy pass over him.

Again and again we did this. With every step, I would praise him, encouraging him to say "Look at me! I can do it!"

Finally, I took my hands and pulled them away, leaving him with only the support of the arm floaties. Again, a look of terror crossed his face, but it was quickly replaced by pure joy. He was held up, on his own, and the look on his face was priceless. He was there, with all of the other kids, doing what they were doing and he didn't need me. At least not at that moment.

I can't tell you what I felt at that moment. Pure joy, seeing my son realize what he had the power to do all along, feeling his pride. In minutes, he was moving around the pool in those floaties, going back to the steps and jumping in, a permanent look of joy on his face.

I know the other moms must have thought I was insane with the amount of praising I lavished on this child as he floated there, on his own. But I knew it was an incredible victory.

And I started to think that God must feel the same way I felt, seeing Alec floating above the water, with that smile shining from his face. He must want so much for us, but we hold on so tightly to our fear. It keeps us from doing the incredible. How hard it is for us to just let go and trust Him to take care of our needs, to guide us on, to fully trust His support?

Seeing Alec, with his looks of fear replaced by pure joy, I thought "We are so like that. If we could only let go, what would we be able to do? Could we push past the fear and discover that we can do far more than we imagined?" I believe we can. I'm gonna try.

Autism + Vaccines = Tax Dollars - Independent Media TV

Autism + Vaccines = Tax Dollars - Independent Media TV

IEP RESULTS ARE IN

I have been absent around here lately because of the preparations for Alec's IEP meeting, which ran for three hours on Tuesday and then recessed until Friday, when it ran another two. (whew.) Thank you for everyone who emailed support our way. It meant a lot to us.

What can I say about it? Well, I want to say that we had a LOT of prayer for it! Matt and I belong to a neighborhood Bible study group. (Not meaning to push my faith on anyone, just telling you the way things happened for us. I don't hold back on prayers for my family, and know we need God's help in these important battles!) When we arrived at the school, a man from our neighborhood group was there for support, and that amazed me that he would take time out of his day just to be there as we went in. The group had all said many prayers for Alec that week. So, I nearly cried when I saw him there, a friendly face just to give us courage.

The meeting included CMS's autism specialist, who was the high-level representative for CMS, two teachers from McAlpine Elem, Alec's 2004-2005 Pre-K (self contained) teacher and his speech teacher. We also had our ABA consultant, and my tutor, Julie, and Candice from the Council for Children, who heard my complaints about CMS not offering any autism classrooms on the P-K level, or 4 yr. old self contained classroom. When she introduced herself as being from the Council for Children, one of the teachers (whom I didn't know) looked like she was about to fall out of her chair.

It was a long meeting and everyone bantered back and forth. Matt and I expressed our regret that CMS was not providing the same type of classroom as Alec had the past year, which was working so well for him. We did mention that we were willing to go to mediation rather than have Alec attend the Bright Beginnings classrooms as they are, and stressed that we felt they were understaffed to handle all of the issues that will be in these classrooms. At that point, CMS offered an itinerant teacher to help Alec adjust to the classroom. My ABA consultant and tutor were shaking their heads "Yes, Yes!", so we decided to consider this, but had to break at that point for the day.

On Friday we met again, and discussion began on how much time the itinerant teacher would be with Alec. We finally agreed on 20 sessions per month. I think that this was about as much as we could get from CMS without going to mediation or court. We accepted this, along with 4 sessions of speech/week. We also wrote in that we wanted to provide a checklist form that we wanted returned weekly to see if every goal from our IEP list was addressed, to help us in working with Alec at home, and to ensure the goals we came up with for him (really good ones) were being worked on regularly. In short, I want the data, baby!

My ABA tutor, a student at UNC-C about to graduate, really was a star in the meeting. She knew ALL of the laws and procedures and recommendations (we had been researching for a week) and REALLY held CMS to them. She pointed out flaws in providing a continuum of services (meaning, appropriate options to choose from), NC Dept. of Public Instruction classroom size guidelines, which were smaller than what was being offered. I think this had a great impact on the direction of the meeting. There were no ugly words or arguments, but we didn't budge.

Now, about my fears about CMS. I have to say that the CMS representative was very reasonable, although we did have to have our homework prepared to get extras for Alec. She was not mean or rude in any way, and we spoke privately about the need for parents to be more involved in educational options for our spectrum kids. I told her a bit about what it is like to fight so hard for everything for your child ... for medical care, for pediatricians who will try to help, in insurance battles, and for appropriate education.

I told her that parents are so used to having to fight to get anywhere, and that is why we bring in an army of people to help our kids. That is why we are tired and angry. I don't know, of course, if anything got through. We tried to see it from CMS's perspective, but not to bend a bit on what we wanted for Alec. I went into that meeting feeling that it was an "us against them" situation, but felt that my opinion changed so that we would try to make it a joint effort. That doesn't mean accepting the first offer the school system gives. I believe you should ask for the moon if you feel its necessary for your child to get help.

I know that all might sound crazy or hopelessly optimistic, but I still have hope that things can be better, and that you win more people with honey than --- what is the clique? I don't remember, but you know what I mean.

We brought many things to the meeting: copies of research and NC statutes, the Win WIn IEP book (a great reference and huge help!), but the thing that I think mattered the most was an 8/5 x 11 print-out of Alec. It made everyone remember the reason we were there: for a real little boy. I'm going to do that in all of my future IEPs.

So where does that leave us? We only have CMS ... and the option of pulling Alec out completely for a full blown ABA home program. (Money, of course, is a great issue, as it is for many or most of us.) We feel that this could work for Alec, provided he ends up with a good teacher and that the kids in the classroom are compatible with him. So, it's gonna take a little more faith....

That's all I can say....I feel that we did everything we could, and that CMS did give us more in the extra speech and the 20 sessions/month of itinerant (I can't spell that) teacher there for Alec.

Stay tuned for the next post entitled "Our Camping Trip"... Now, that was a battle!

Look Out! We've Been Podcasted!

Anyone out there listening to Podcasts? Now that IPods are everywhere, online journals (blogs) are now being converted to MP3 formats so that IPod lovers can download their favorites and take them on the go. "Podcasting" is a way to tell your personal computer to automatically download audio files onto your mp3 player so you can listen at your leisure.

Just recently, I have learned that Walking With Alec has been chosen to be podcasted by Talkr. What is Talkr?

Here's a straight line from the Talkr website:

"Talkr provides a service that allows you to listen to your favorite text-only news sources rather than read them. If you can point us to an RSS feed (a machine-readable version of your favorite blog or news source) we will convert that feed from text to speech. "

If you are Ipod-savvy, or if you just prefer to listen rather than read, you can subscribe to this blog and others at the Talkr website, available at www.talkr.com.

All posts here will now have a link following the text so that would-be readers can listen to posts.

Here's to Podcasting!

PharmaLive: President Bush Should Remove Mercury From Vaccines Say Parent Advocacy Groups

PharmaLive: President Bush Should Remove Mercury From Vaccines Say Parent Advocacy Groups

Today on "Pharmalive: The Pulse of the Pharmaceutical Industry"... Finally, they are taking note! Parents are sick and tired of our nation allowing the mercury-based preservative AND NEUROTOXIN thimerosal to remain on the shelves and in certain vaccines. There is no excuse for it, and parents will not rest until it's off of the shelves.

"You Did It"

An email from David Kirby, Author of "Evidence of Harm" and NY Time reporter:

"Hi - For a writer, I am pretty much at a loss for words. I never dreamed this would go so far. It speaks volumes to the power that you, the parents, wield in this controversy, and you can bet that your adversaries are taking note. You have managed to ratchet up the pressure several notches in 24 HOURS, sending my book from 1850 to #4 in the process, beating out Oprah (as much as I want people to read Faulkner…)

Thank you ALL for making this a brilliant day that I will never forget. The week’s sales figures (and NYT list) will be out next Wednesday, I think, and published in the paper two weeks from this Sunday (again, I think). If the book reaches the top 15, it will be in the paper. (Books sold until this Saturday night are included in the weekly numbers).

Thanks again, and special thanks to Leslie Weed, Shelley Reynolds, and Dave Taylor, for promoting EOH day, to JB Handley for that huge NYT ad, and to Lenny S, for creating this list and being such a gut-splitting dinner companion in Chicago."

DK

New Website Devoted to Prayer for Those Affected by Autism

New website: Children of Destiny

From this website: "We first became interested in autism when our 2-year-old son, Nicholas, was showing signs of developmental delay coupled with intestinal difficulties in mid 2000. In January, 2001, he was diagnosed with autism. We believe in the power of prayer and believe that God’s hand is firmly on Nicholas’ life. We have implemented several other interventions for Nicholas, including the gluten- and casein-free diet, several biomedical interventions, and an intensive program of Applied Behavior Analysis. While each intervention has helped Nicholas come to new levels of success, we firmly hold to the belief that the most powerful intervention we have brought into our son’s life has been to give him over to God and allow Him to order our steps concerning Nicholas. Although the path has been a difficult one, we have seen steady progress as God works new miracles day by day. God has yet to disappoint us in any area with which we have fully trusted Him!"

Fighting the Giant

IEPs, or Individualized Education Programs, place a child with a small group of the child's advocates such as the parents, therapists, consultants, guardians, attorneys, or other counsels, and sometimes all or none of the above. All meet with "the giant", the school system.

I have heard many good, and unfortunately a lot of bad, experiences of parents trying to obtain an effective (i.e., "Appropriate") public education for their autistic children. It's a reason to stay up nights, worry, fret, yell, scream and cry. It's a reason some parents run for private schools, those which are blessed enough to be able to pay the tuition. Unfortunately, many parents do not have the option to pay high tuition costs, especially when paying out of pocket for biomedical and behavioral treatments, much of which are not covered by insurance.

I have to admit that it often seems like the world can be against the ASD child. Pediatricians, who many have not known how to treat autism and related developmental disorders, are just now beginning to take note of new promising treatments, but only, it seems, after much pushing and prodding from parents desperate for answers and help. Add to that the problem of paying for therapies such as speech and OT, and behavioral interventions such as ABA, most of which are not covered by insurance, or if so, only in part. Again, there is a battle for the child.

Then we come to the battle of obtaining education for a child. Parents, weary from being constantly on guard for their child are once again put up against a school system with a limited amount of resources and an increasing number of autism spectrum disorder cases.

This is the battle Matt and I will go into tomorrow morning for Alec: his second IEP meeting. I have to say we did have to fight in the previous years IEP meeting for Alec. But after a few trips down to the Exceptional Children's Department, and in one time my husband refusing to leave until Alec received his promised school placement (which had unexpectedly been changed), we managed to secure Alec a spot in a pre-K self-contained early intervention classroom with 8 children and two teachers, one of whom was specialized in special needs kids.

Flash forward one year: all school system-wide classrooms, such as the one Alec was placed in, with the small teacher to student ratio have now been eliminated. CMS is now placing these four year olds into the "Bright Beginnings" classroom, a program designed for socio-economically disadvantaged kids with a literacy-based program... and 19 kids to one teacher, who may or may not be specialized in special needs (they are getting a summer "crash course", I am told) and one assistant.

Despite NC State Law, GS 115-113:

(b) An initial multi‑disciplinary diagnosis and evaluation based on rules developed by the Board shall be made before any such child is placed in a special education program, removed from such a program and placed in a regular school program, transferred from one type of special education program to another, removed from a school program for placement in a nonschool program, or otherwise tracked, classified, or treated as a child with special needs.

No diagnosis or evaluation was made for Alec. I could go on and on here about why I think Alec's rights under IDEA have been compromise (there are many reasons) but in the end it will all be resolved, beginning tomorrow, when we have the official battle with this "giant".

What are we taking into this battle? Our educational consultant, our ABA therapist, a letter from Alec's neurologist stating the ABA is medically necessary for our son, and a representative from the Counsel for Children, who heard our complaints and feels we need representation.

But most of all, we are taking one more thing: Our faith that God will take care of this for Alec. We prayed about it, enlisted the prayers of our family and friends, and now I no longer have to worry.

It's all in His hands. I think we have all we need. I know God is faithful, and will be again, in this endless series of battles in this war against this autism.

Buy a Book Save A Child Campaign for June 8th, 2005

Join thousands of parents nationwide in this campaign to push David
Kirby’s Evidence of Harm to the top of the bestseller lists.

So far sales have been strong for this milestone work on the autism
epidemic. Now it’s time for more. Time to put this book on the New
York Times bestseller list.

On June 8, please buy multiple copies of Evidence of Harm from a
Barnes & Noble retail store. Then give your extra copies to other parents, physicians, legislators, and journalists.