Merck Vaccine Plant Problems

Thanks to my niece for this interesting piece of information.

If I were expecting a child today, I would not vaccinate my child right away (and plan on nursing), making damn sure that I signed all of the papers to waive vaccinations in the hospital before I delivered my child. Then I would find a pediatrician who would respect my wishes to put my child on a vaccination schedule wherein the vaccinations were spaced far apart.

And, I'd be campaigning to green the vaccines (see below).

Short of that, what do you do?

Passing the Torch

This article nearly killed me to read. But, it's worth it because there are two men who are walking for autism from San Francisco to D.C. They are friends of the family of a little boy with autism who passed away at 7 years old named Elias Tembenis:

"The Elias Tembenis Walk for Autism is a journey across America to benefit families struggling to pay for autism therapy and medical services. Two friends of the Tembenis Family, Robert Williams and Bobby Genese, both of Worcester, MA, will begin their walk in May 2008."

Here's more from another article:

Robert Williams and Bobby Genese of Worcester will walk approximately 3000 miles in honor of Elias Tembenis, a seven-year-old boy with autism who passed away last November following a seizure. Tembenis family friends Williams and Genese hope to provide aid for the 1 in 150 now diagnosed with autism.

"I'm honored to help," said Genese. "Even a waterfall begins with only one drop, giving rewards."

Elias was the only child of Harry and Gina Tembenis of Worcester. They wish to honor their son's memory by helping children like Elias.

"We wanted to honor the light he brought to our lives by keeping the torch lit," said Gina Tembenis, "and passing that torch to other families rather than just letting that fabulous light go dark."

Addendum: Here is even more inspiration. Apparently, TACA (Talk About Curing Autism), is going national. Here is one dad who is trying raise $5,000 to start a chapter in Washington state and raised almost all of the money online. You can read about it here. Just shows you what parents and friends can do. This is the blessing of technology.

Jim and Jenny's DC Rally in June

Read on to see how you can "march" with the ralliers even if you can't attend. Great idea!

Thousands Expected to Attend June Rally in DC -

Register Online

Continuing the media momentum that began with Jenny McCarthy in 2007, and amplified by the Poling decision in 2008, Jim Carrey joins Jenny in inviting the community to attend their "Green Our Vaccines" rally on June 4, 2008 in Washington, D.C.

The event is co-sponsored by Talk About Curing Autism (TACA), Generation Rescue, HEAL Foundation - Healing Every Autistic Life and Moms Against Mercury. The aim of the rally is to focus attention on eliminating the harmful substances in vaccines and making the vaccine schedule safe.

The rally begins at 9 a.m., followed by a march at 10 and a press conference at 11, at which Jenny McCarthy, Jim Carrey, and members of Congress will address the media. In addition, there will be opportunities to meet with your legislators in the Capitol. This rally will make history, and everyone within reach of Washington, D.C. is encouraged to attend.

Can't Make it to the Rally? Buy a Puzzle Piece and Send a Photo

Want to your child and family to be represented at the rally?
Ellen Sweeney of Brick, NJ is selling Autism Puzzle Pieces for
the Million Dollar Puzzle Piece Challenge, a fundraiser that
benefits the Autism Research Institute, in honor of Dr. Bernard
Rimland.

"Bernie was instrumental in starting me 9 years ago on the biomedical path to help my son Nicholas, now 11, diagnosed with autism. I was lucky enough to find ARI when I was searching for answers to help my son and when I called ARI, much to my surprise, Bernie answered the phone and told me all was not lost.

He guided me through the tons of information and helped me to find research on biomedical and behavioral interventions like ABA, VB, etc. I am asking for any parent who cannot come to the rally who would like to be represented to drop a picture of their child or loved one affected by autism into an envelope with a donation to ARI (minimum of a $1 please but feel free to give more!).

I will affix the picture with the name of your family, your
child's name, whatever you prefer to the puzzle piece and place
it on a sign that my son with ASD, myself, and my daughter can carry (or a banner if I get a lot and there is a need!) so your family can march with us in DC."

Thanks so much for helping support ARI and the Green Our Vaccines Rally!"

Deadline: May 23rd

Visit the Autism Research Institute to read this article reprinted here, and subscribe to their newsletter!

One Family's Autism Journey in the UK

A Thank You Note to My Family

I am writing today to express my gratitude to our family for all of the help they have given to us over the last four long years.

We know that Liberty would not be anywhere near where he is now had it not been for his grandparents, aunts, and cousins who adore him and who have contributed to his welfare not only financially but who have exended to us their unfailing emotional support, as well.

We consider this to be part of our prosperity and abundance and take none of it for granted. We remain acutely aware each and every day of just how very blessed we are to have this circle of family love and security that supports us and buoys us, not only during our weak and fearful moments, but also celebrates our joys. Oh! How truly fortunate we are.

Our insurance in our state does not cover autism...yet. We are hoping that soon the financial burden for families will be lifted in every state.

For those who do not understand the cost of treatment, consider this. DAN! doctor appointments whether they are in person or by phone are anywhere from $250 t $400 per hour. We are fortunate that our doctor does not charge by the hour but has flat fees of $250 per phone appointment and no charge for weekends or extra phone calls.

Juts today, I received Liberty's drugs in the mail by our compounding pharmacy. The Valtrex for our new antiviral therapy was $210 with our insurance co-pay. The set of 12 methy B-12 shots were 45. One pill of DMSA for a urine metals challenge was $4.95. Our antifungal, Diflucan, was $87. The delivery fee was $35. All told, today's bill amounted to approximately $380. Not to mention the $250 just spent on our follow-up appointment last week. Oh, and the new supplements were around $50 for the curcumin, inositol, niacinate, and taurine.

Over $700, and, I have not paid a big pile of daily living bills yet!

But, look at how far our little Liberty Marshall has come...look how far. How do you put a price on THAT?

So, to my dear, sweet family we thank you profusely. But "thank you" is just not enough.

Thanks for all of the LOVE.

Autism Yesterday

Good Things (as Martha says)..

Yesterday, Liberty rode a rollercoaster for the first time in his life by himself! You'd think I had pictures right? Wrong. Forgot the camera. It's just so much to juggle. I need to get a small movie camera like the Wondershot or something. I've been meaning to do that but other things have taken precedent like supplements and DAN! doctor appointments.

ANYWAY, there was this rollercoaster that looked like a Japanese dragon. It was child-sized but it went pretty fast around the little track. He was just dying to go on it. The attendant strapped him in tight and I just prayed he understood when I told him to hold on. My heart was in my mouth as the thing took off suddenly and Lib jerked back a little. (I had these fearful images run through my head of him ripping off the seatbelt and jumping out, me second guessing my decision in those few seconds...).

I wrung my hands like Ma Kettle and then I saw it: The sheer joy of being free on my little boy's face. He was holding on, grinning from ear to ear and riding that thing! He was in the front car with other little children behind him - all of them holding on and laughing and grinning. Tears just streamed down my face. I think he is capable now of so much more than I ever imagined.

He loved it so much, I let him go on it again before we left and he even handed the attendant his tickets!

My heart just swells with joy as I think of this.

He went on the "bungee jump" (not really a jump - just suspended in the air by cables with a big inflated mat underneath so you can jump up high). I wasn't going to let him go again because it was rather pricey, but he cried and screamed out, "AGAIN!" You never saw anyone put a kid on a ride so fast.

Gotta reward those words!

He's such a trooper, my Lib. I realize that there is now a fine line between over-protecting my son and allowing him to do things on his own. In the past, I have been super protective because with no speech and no way of knowing that he heard me or understood, you know I could not be for certain that he could handle anything like riding a ride on his own. I'm just not sure what he is capable of, and I would forever regret that I was not the protector I should be if something terrible happened to my son.

But, yesterday, he showed me. My son is getting ready to fly. I must let him.

Sunday Morning Sensory

Look Liberty brought me some flours!

Tests

Well, I survived the IEP. Liberty has a good plan in place and I am content with the method of teaching they are using. Never mind that I found out Liberty's teacher is pregnant and won't be back next year. *Sigh*

What floored me during the meeting is the fact that, had my sister not been there with me, these folks would have given my son an IQ test without my knowing about it.

That's right.

Someone shoved a piece of paper underneath my hand to sign and my sister quickly took it out of my hands and said, "Do you know what this is? This is permission to give Liberty tests and apparently they are starting today without your prior permission." They did not even tell me ahead of time. I think that is against the law, actually. Don't get me wrong, my sister was not a total witch at the meeting or anything. She just knows what she is doing and she can see bullshit coming a mile away. She worked in the field of learning disabilities for 30 years. She is a speech therapist and administrator. She has sat on both sides of the table.

And, she is invaluable to me. I am very much indebted to her help and guidance through this confusing labyrinth called "special education."

There is an IQ test called a Wechsler (Wexler). To give it to my non-verbal son is ludicrous. They argued, saying that it was just a number no one would take seriously. I told them that if a number was given to Liberty, which would be very low, I don't care what they say, anyone who had any kind of contact with my son from that point on would see that low IQ and in turn lower their expectations of what my son can do. I know my son is not mentally retarded. I know he is a smart child. But, you cannot give a one-size-fits-all test to my son. So, my sister hashed out with the folks in the meeting what tests she thought were appropriate and they finally all agreed, and there were about three, I think.

Like all special needs children, Liberty has to be re-evaluated before age six because the State of Florida says he cannot be labeled "developmentally delayed" any longer. It has to be ASD or language delayed.

We will be called back for the results of the tests (oh joy) in May by the school psychologist. It occurred to me that Liberty might have to go to another school. Gee, all of a sudden, it seems his future hangs in a balance. Oh well, I will just spend the time in between visualizing him in the best possible place for him to be.

My sister told me she will be with me at all future meetings because I almost had the wool pulled over my eyes by this school that I trusted. It was very disconcerting to me. I asked her if she thought I needed to change school districts, but where we are, the ratio of teacher to student is really low, so I think he is still in a good place. I just knew that when I was advised to send my child to school at age 3, that even though the structure has been good for him and all of that, I felt that the system had a hold of my boy then. And, it's so true. Is it not enough that we have so much on our plates already trying to help our children, that we have to protect him from falling through the cracks at school and be constantly vigilant lest his care being mishandled? The liaison who was conducting the meeting gave me the standard pat assurance: "We care deeply for our children in this county." I felt like saying, "What does that have to do with the fact that you did not tell me you were starting to test my boy TODAY and give him an IQ test that I nor his father had approved?"

My sister and I both said, "He will have no Wecshler IQ test. Period."

Anyway, we are waiting to hear if we got into autism camp this summer. We are number 5 on the waiting list. The camp was recognized nationally last year. There are now so many children who qualify to go but only so many slots. This area is full of parents now who are "coming out" of the closet so to speak with their biomedical treatments! I will be posting more on this exciting development later.

In the meantime, if your child is in preschool or about to turn six, keep your eyes open for the kind of testing your child will be receiving. Ask the school administrators for a list. They tried to tell me and my sister that it wasn't important, that I didn't need to know! My sister actually had to say, "Oh no, that is not true. You are required to reveal the tests being given."

You know we did not go into that meeting hostile or to be bitchy or anything. The speech therapist at the table actually raised her voice so loud, it was nauseating to me. We were simply advocates for my child. My sister even praised them for the good things that they had all done for my son this year. But, their approach to testing, was dead wrong and illegal. I guess smaller counties can get away with it as long as they don't have watchdogs like my Big Sis around.

So, Bottom Line: Don't let them test your child without your permission!

Loving What Is, What A Concept!

For those of you who are following the Eckhart Tolle class on Oprah, as I am, you may want to check out the work of Byron Katie. She has a method of inquiry actually called, "The Work," that really helps to sort out the truth from our judgments about reality. Here is what Eckhart himself says about her on her site:

"Byron Katie’s Work is a great blessing for our planet. The root cause of suffering is identification with our thoughts, the ‘stories’ that are continuously running through our minds. The Work acts like a razor-sharp sword that cuts through that illusion and enables you to know for yourself the timeless essence of your being. Joy, peace, and love emanate from it as your natural state.” -Eckhart Tolle, author, The Power of Now

There are quite a few videos you can click on where you can watch Byron in action, doing The Work with people at workshops.

I have her book "Loving What Is," and "I Need Your Love - Is That True?"

I am sharing this because I did The Work on some things that were bothering me last night and I had a Eureka moment. So much so that I dreamed I was in a hospital and Byron Katie was my doctor. Is that a message or what?!

Check her out. You'll be glad you did!

Amen, Judy!

Judy Blume wrote a nice piece on her blog as to her decision to vote for Obama. I wholeheartedly agree. Check it out here.

Right Under My Nose

This is just an example of how perception is just another word for habitual thinking.


I have been taught for so long by therapists and people working in the field of sensory disorders and autism about the philosophy and techniques of getting a child to communicate, that I have missed an important part of the whole thing: That would be the fact that my child IS indeed communicating and has been for some time.

This is where someone bangs on my forehead as in the V8 commercials. Hello! Anyone home?!

It took both of my sisters, one a deaf edcuator and the other a speech therapist to point out the obvious: That the reason I am having difficulty with pictures or sign at home is because Liberty has moved beyond that!

How hilarious is that?

It's so true. My dear sisters spent the afternoon with us yesterday observing. Liberty said, "Ow" to go out, so my sisters let him go outside. He indicated he wanted to go to the car, so, my sister promptly let him get in her car. He indicated he wanted bacon, even shaking his head for yes. I wasn't sure, but my sister was, and damned if she wasn't right. He was starving for bacon. They see the gestures better than I do because I am looking for more precise communication.

Har-dee-har-har.

This morning he brought a bag of graham crackers to me and said, "Cacuh." Intense total eye contact. Emotional connection. Happy. Hug and a kiss. Off he goes. The other day he brought his cup and a bottle of water to me from the refrigerator. He was having trouble twisting the top off. And, that sound that sounds like, "do,"...sit tight folks...actually means, you guessed it, "Do!"

I just didn't get the fact that the pictures and the signs are mere props for "communication," and that includes non-verbal communication. I've just been on the same kind of regimen since Lib was 20 months old when the therapists began to troupe in and out of our house.

And, indeed, Liberty's speech is emerging now. The eye contact, the pointing, doing everything he can to get his needs met, and trying to repeat words. Apparently, I thought I was not having success if the child did not hand me a picture, look me directly in the eye and say the word. Or sign each time he wanted something. The fact is, if he was not signing, he was SAYING something. And, that's what we want, right? I was so intent on Lib saying a word correctly that I just missed the point of the whole protocol.

Toddlers don't start out saying words correctly. "Excuse, me mother dear, may I have a cracker, please?" They get parts of words or something that sounds like it. And, what do adults do? They just keep repeating the word correctly and one day the child gets it.

Yep, he might be 5 and a half, but he's in his toddler phase "at this moment in time," and I am loving it!

I sure wish I could tell other parents what it took to get here. That it was a particular supplement, or a doctor, or a teacher, or a shot, or something. What I believe is that, everything we have done has all come together to help kick-start his body's own ability to heal itself. This is what I believe is called "synergy!"

I also do not underestimate the power of therapeutic listening. Since Liberty started back on on his listening program, almost all of the supposed OCD symptoms are gone. If you look up autism and CAPD (central auditory processing disorder) you will find that so often these two go hand in hand. I first learned about this through a book called, Awakening Ashley by Sharon Ruben. Sharon used the Tomatis Method. After looking around, I found Vital Links and the therapeutic listening program in my town administered by only two certified occupational therapists. We saw almost instant changes in attention.

There is a book called, "Like Sound Through Water," by Karen Foli, whose child was diagnosed with autism but actually had auditory processing disorder. The child passed hearing tests, but the brain was unable to process sounds correctly. This can affect the reaching of milestones. He began to speak and understand after he later "retrained his brain" with a program called Fast Forward. He later told his mother that everything sounded to him like it was underwater. Fascinating.

My oldest sister, Bev, the speech therapist, handed me that book after observing Liberty for a time. She is now retired, but she was responsible for bringing Fast Forward into the county's school system. I am so proud of her for that. And, there is "good science" behind it, to boot. And I think it is kind of an eery thing, that she would do that before we knew Liberty was having problems. It was almost meant to be. Lib will be using Fast Forward eventually.

Liberty is a very different child than who he was last year. We were in Dr. Bock's office last July and he was really withdrawn. He was hyper in the motel room. He was not communicating. What a difference a year makes.

Am I still frustrated at times? Yes! Is he still frustrated at times, you bet! But, out of frustation, many times, comes success.

Yeah, I know.

Duh.

April - Hiding Out Time

I can appreciate that April is Autism Awareness Month - for others. For me, of course, I am acutely aware and I usually have to duck and cover when all of the email and phone calls start. "Did you see that article?" "Did you see so-and-so on Larry King, or Montel, or CNN?" "Do you really believe in chelation?"

Oh, everyone means well. And, it's not them. It's me.

I just have to say that I am in the middle of my son's recovery journey and our venture into biomed treatments and that makes me a little shaky. Don't get me wrong, I am an advocate for my child. I have been the researcher, teacher, therapist and gluten free/casein free/yeast free/sugar free (and probably taste free) chef until I could just drop dead of exhaustion. But comes a time, as Neil Young sang, when the smartest thing I can do is to keep my focus on the present and not get pulled down again into the muck and mire of the "painful story." Comes a time to be quiet. To seek sanctuary. To accept what is.

(Here's where parents scream that they don't have to accept their child's current state of autism and do nothing).

What I mean is, if you don't accept the way things are in the present moment, then assume a stance that is warrior like (fighting autism, battling autism, winning...) what you are doing is pushing against the present and creating resistance - PAIN. You can accept something and decide to take a course of action without all of the thoughts about it that create the pain. When you really think about it, all we are doing is reacting to words, to thoughts. (Why people meditate, but that's another conversation).

Once again, I proved this to myself today. I had the thought, "Where am I ever going to get the money to take care of my boy if he winds up in a home? (Tears). He is so far behind now he won't be able to ever catch up with his peers. (More tears). I mean, we are not even past the word "ball" for God's sake and he's 5 years old. (Unconsolable basket case).

After talking to my sister (thank God she is retired and actually studying Tolle's work), I was helped back to the present moment and had the following thoughts: My son is so happy, look how far he has come in a year. (Tears drying up). Look how far in just one month. (Brighter). He is blooming like a flower, it's subtle, it occurs when you aren't watching, or it is slow growth and you miss it, but it is steady and every day something great happens. (Picking up the energy). It is possible for a child to move through his milestones swiftly once the connections are made. (Feeling better). He'll catch up and so what if it is not in the "usual" timeframe. So what? (Back to balance, well-being).

When I talk about reaching for relief thoughts, this is what I mean. I have been given an incredible opportunity to practice this on a daily basis and it is life-changing. The Teachings of Abraham have been of enormous importance in my life. (See side link for more information).

But I digress...

My son is on Spring break all week until next Tuesday. There has not been much to do with the weather being kind of foggy/cloudy/humid. I had been dreading the week because I truly cannot get a lot "done," which is mainly the work I do at night if, that is, I can keep my eyes open after Lib goes to bed. But, turns out I have really enjoyed being with my boy. Perhaps it is because he is engagable now. He is communicating his needs to me better. Not only that, he is sharing experience with me. It feels as though he is more present now, too. He is looking at me more and more, searching my face, sharing smiles.

I put a little table in a corner of the kitchen that has become our therapy table. Liberty puts his headphones on for his therapeutic listening and we sit and do puzzles or color or something like that to get him to focus for gradually longer periods of time. The CD he is now listening to has nature sounds on it. For a few minutes this morning, I could not figure out how I got crickets in my house, then I realized it was coming from my child's head! There are also dolphin clicks on this one which he loves.

Last night, we watched Finding Nemo together on the couch. I love to watch his little face, the way it lights up when something funny happens, or how he is scared but thrilled when something terrifying is happening and he buries his head in my neck. He did not let me up off the couch and when I tried to get up to do something, he pulled me back down and gave me a pleading look that I had never seen before! And, today, I got a huge kiss then he put my hands on his ears, meaning, "please put my headphones back on, mom."

He is doing lots of pretend play. I see animals and little people hopping all over the house. I know when he is playing, I hear it on the stone floor. Hop-hop-hop, throw. Hop-hop-hop-hop-hop, throw.

It still breaks my heart though, when we go to the park and I see boys his age, or worse yet, kids so much younger than he is, who are running with their friends or siblings and talking up a storm and pointing. While my son is not withdrawn, I don't see any of that "normal" stuff. My wish for him is that he had some folks to play with, who would allow him to be as he is. There was a little boy in our neighborhood who loved to come down to "Wiberty's Woom" and who was very verbal and very nice to Lib. He used to ask why Liberty was not talking and I could tell him and he seemed to understand. He would take his hand and say, "Come on Wib..." Or if Lib was doing something silly, he would sit and laugh. Unfortunately, his family moved last summer when we came home from our DAN! doctor visit in New York. Children like that are GOLD to me.

Another reason for sanctuary this month: The IEP is a coming down the pike on the 10th. And, I have to figure out why my son is not being taught PECS and whether Verbal Behavior is better than PECS and I have no idea really. So, my sisters are coming along with me: One is a retired speech therapist, the other sister is a former teacher of deaf children and adults who is fluent in sign. I call them The Big Guns. Seriously, I need help sorting it all out.

I was getting ready to end this long-winded post, when Lib walks in and starts turning off the lights and puts his arms up to me. This is the cue for "I want to go to sleep." As we go to his room, I pass an area where he has set up his play animals. It is stunning. So....so....dare I say that stupid word? Normal.

He gets in bed and wants to sleep with his Giraffe! A first. It's plastic, not cuddly, but you know, he wants it to go to sleep with him. Wow.

My God, we are having a whole rash of "firsts." I'm delighted. I can't believe that earlier today, I was thinking such depressing, dire thoughts about my son's life.

What I really need to duck and cover from is my own mind.

(Earth) Mother Love

Paean to the Earth, (paean meaning "song" or "praise"), is a collection of essays and short stories based on the author's experience living in the western portion of the United States. Through beautiful writing, she explores global warming and climate change, the earth's delicate biological balance, and also how future generations might deal with the ecological issues that face our planet.

On the back cover:

"I believe it has come to pass that even with our great intelligence and schools of thought about so many things, we as a culture have lost touch with the set of instructions that bring balance to our actions: a sense of how much is enough, a feeling of reverence for all life and basic knowledge of how to live on Earth." - The Author

This book happens to be very near and dear to my heart. Why? The author is none other than my sister, Susan! And check out the beautiful photograph that graces the cover and back, taken by Susan, herself. I never knew how wonderfully rich and alive the desert was until my sister moved out West.

You can tell she comes from a family of teachers. Because of her diverse background in natural history, the reader not only learns more about Mother Earth's natural systems and the interconnectedness to her inhabitants, but also comes away more inspired to help restore this beautiful planet that she so dearly loves.

Just in time for Earth Day, this book would make a great gift for yourself or someone else.

Also, check out Susan's blog. There is a RED ALERT posted about climate change that you will want to read.

Love Is

Liberty

Emerging

This is a post I have been wanting to write for a very long time.

My son is finally emerging from his chrysalis.

I think that it is easy to judge and say that he is just now recovering because I see evidence of it, but the more likely reality is that it is has been happening all along, we just don't tend to believe something until we see it.

I cannot say for certain what the main catalyst has been, if there is one. We have done many things which I can list out, but in the end, Liberty's "becoming" is part of the Great Mystery.

We have a DAN! doctor. We have had him on various supplements. He has been on Diflucan for going on three months now to get rid of yeast. We know he had a bad yeast problem because the die-off symptoms were pretty bad, and because the cradle cap on his scalp is now finally resolving. I had no idea how long it takes to get rid of yeast.

We recently added spironolactone to reduce inflammation. I always start out giving my son a lower dose that what is prescribed simply because I don't know how he will react, and I can't take back something once I have given it to him.

Just about two weeks ago, we re-started therapeutic listening with a new occupational therapist who is the best he has ever had, and she started him on a different CD and has him do tasks to increase his focus and concentration.

In the last month, he has begun dressing himself, following commands, signing appropriately, beginning to say words, giving direct eye contact, and playing with age appropriate toys, engaging in pretend play, and is almost completely potty trained.

One month.

Last night, he became very angry with me when I told him he could not go outside at 8 PM - his bedtime. I showed him that it was night time and it was cold outside. This is Liberty's way of telling me that he needs to go to sleep. He loves to ride in the car, and I know that he thinks if he could just have a little ride before bedtime, he would fall asleep easily. It is also his way of fighting bedtime. He knows he is tired, but he just can't make himself get into bed.

After telling him no for the tenth time and signing no, I sat in the living room. He never took his eyes off of me, furrowed his brow, was clearly angry with me and got right up in my face. His look bored holes into my skull. I'm not kidding. Then, he tried to pinch my cheeks lightly, something he has never done, and made some kind of sound that let me know he was mad. I tapped his hands away from my face saying no, no that was not nice or some such thing, and his eyes widened in surprise, his mouth dropped open - clearly communicating to me his disbelief. "I cannot BELIEVE you won't get me what I want!" He never took his eyes off of me.

Now, I have to explain why this is a very big deal. Most of the time, Lib is looking somewhere else and he will just cry or fuss when I say no. But last night, Liberty's presence was unmistakable - it shown like a lamp around both of us. I was totally and completely stunned. He wound up kissing my face and hugging me and we walked together to his bedroom where he fell asleep almost immediately.

One month.

Perhaps part of his growth just kicked in, maybe something synapsed in his brain, a new connection made. Maybe the spironolactone did take some inflammation down.

I don't know. I will just keep doing what I do.

I asked the occupational therapist if she thought that Liberty was understanding more. She said she didn't know, that it did look like he was, but she said the bottom line was that she just acts as if he does and that I should, too.

This reminded me of the Pygmalion Effect; that is to say that expectation does influence outcome. I feel that if I hold positive expectation of what my son can do, it creates the space for him to be able to do it.

Let's just say there is a huge space around my son right now, open for miracles.

Voices of the Angels?

All I can say is turn up your speakers.

Exciting News....Why We Love Dr. Bock!

Dr. Bock has just launched his 4-A Healing Foundation. The website is still under construction, but the purpose of the foundation is to give grants to families to help pay for biomedical treatment, train doctors in the 4-A Healing Program that Dr. Bock uses, and to fund research for biomedical treatments for the 4-A disorders.

Here is the press release.

Here is the 4-A Healing Foundation website.

Vision

Monet Refuses the Operation

Doctor, you say that there are no haloes

around the street lights in Paris

and what I see is an aberration

caused by old age, an affliction.

I tell you it has taken me all my life

to arrive at the vision of gas lamps as angels,

to soften and blur and finally banish

the edges you regret I don't see,

to learn that the line I called the horizon

does not exist and sky and water,

so long apart, are the same state of being.

Fifty-four years before I could see

Rouen cathedral is built

of parallel shafts of sun,

and now you want to restore

my youthful errors: fixed

notions of top and bottom,

the illusion of three-dimensional space,

wisteria separate

from the bridge it covers.

What can I say to convince you

the Houses of Parliament dissolve

night after night to become

the fluid dream of the Thames?

I will not return to a universe

of objects that don't know each other,

as if islands were not the lost children

of one great continent. The world

is flux, and light becomes what it touches,

becomes water, lilies on water,

above and below water,

becomes lilac and mauve and yellow

and white and cerulean lamps,

small fists passing sunlight

so quickly to one another

that it would take long, streaming hair

inside my brush to catch it.

To paint the speed of light!

Our weighted shapes, these verticals,

burn to mix with air

and changes our bones, skin, clothes

to gases. Doctor,

if only you could see

how heaven pulls earth into its arms

and how infinitely the heart expands

to claim this world, blue vapor without end.

~ Lisel Mueller ~

(Sixty Years of American Poetry, The Academy of American Poets

Holding Pattern

We're still here. Liberty is doing well. We are going to try an anti-inflammatory next, spironolactone. Dr. Bock wanted him to be on Actos, a diabetic drug, but I was concerned about blood sugar levels.

Liberty was completely negative for PANDAS. We will re-test him again in a month if he still has OCD symptoms, but they seem to be lessening now. Even Dr. Bock said that you would be surprised how powerful therapeutic listening is, and so, we are watching Lib right now. The OT who oversees Liberty's listening program, thought that the symptoms we were attributing to PANDAS were actually side-effects of the listening program since Liberty had had a longer break than usual. I do remember the first break we took and he did a lot of side-looking and spinning. Then again, some symptoms could be attributed to the MB-12 shots that we started in January at the correct concentration.

Who knows? Watching and waiting, already turning our thoughts to summer camp and summer programs, and the good 'ole IEP coming up shortly.

Oh Joy.

The potty training is coming right along and he is dressing himself. This was not the case at all even three weeks ago!

Check out one of the supplements Dr. Bock is going to have Liberty try for inflammation.

It is called cercumin.

Fire Julie Gerberding of the CDC - Call the White House Monday

Below is Jenny McCarthy's letter posted on the Age of Autism. Go there to read the story with comments from readers.

03/07/2008
JENNY McCARTHY: JULIE GERBERDING MUST GO!
By Jenny McCarthy

I’m asking all parents and autism groups to join me in demanding Julie Gerberding’s immediate resignation as Director of the CDC.

On Monday, March 10th, beginning at 9:00am Eastern Daylight Time, let’s all start calling the White House and ask President Bush & Laura Bush to demand Julie Gerberding’s resignation for incompetence during the autism epidemic.

The White House switchboard can be reached at:
202-456-1414

Also, on the same day, please call your local Congressperson and Senators from your state and ask them to call for her resignation, too.

Julie Gerberding has led the CDC for 6 years during a time when the autism epidemic has only gotten worse. Despite tens of thousands of children who declined just like Hannah Poling, Ms. Gerberding stood before cameras yesterday defiant, cold, and defensive. Where is her humanity in the face of such tragedy? Why couldn’t she have said, “We at CDC want to make sure what happened to Hannah doesn’t happen to any other children, we want to make vaccines safe”?

Rather than listen to the heartbreaking stories of so many parents, you can be sure that Ms. Gerberding is spending her time right now trying to get the Spin Machine up and running to minimize, confuse, and deceive the American public.

The autism epidemic won’t end until we fix the vaccine schedule by reducing total vaccines, separating shots, waiting until our kids are older to begin shots, greening our vaccines, and screening for at-risk kids. Ms Gerberding has stood by and watched self-interested parties more than triple our vaccine schedule and I’m certain her inactivity to help our kids will continue.

The chances of Ms. Gerberding taking the radical steps to reform the CDC and reform our vaccine schedule to make it kid-safe are zero! We need a new CDC Director who is an open-minded reformer and who recognizes that we are experiencing an epidemic of autism, which Ms. Gerberding has never publicly admitted.

Please, parents and national autism organizations, let’s all help make our voices heard on Monday.


Thank you,

Jenny McCarthy


Jenny McCarthy is an actress, author and autism advocate

Bill Maher Anti-Pharma Rant

here

Thanks, Chris

I don't know if you caught Good Morning America today, but it was refreshing to say the least after Larry King's interview. Last night, it was as if the Polings had nothing to say.

This morning, however, Dr. Poling was very talkative. He spoke about the fact that thimerosol has been proven to cause mitochondrial disease. This is what the government has called Hannah's "pre-existing condition" which worsened with vaccines. I don't know who Dr. Zimmerman is, but Dr. Poling said they did research with his help.

He also stated that thimerosol was not taken out of the vaccines in 1999 as the CDC only recommended to do so and it was not mandatory. He stated that thimerosol was still in the vaccines through 2005. Of course, we know that thimerosol is still hanging around in the vaccines, but it was refreshing to finally here Dr. Poling and his wife say what they really felt and to be allowed to do so.

Mrs. Poling described her healthy daughter and the downward spiral of her health after the vaccines. She went into some detail about the symptoms displayed by her child. Why they did not speak out on Larry King is beyond me. It was a very strange show.

Anyway, I appreciate Good Morning America for airing the story this morning.

I need to let this all go today and move on. Everytime this issue raises its ugly head in the media, I get very depressed and angry all over again. Better to take my shot records and doctor notes to a lawyer and get on the list with all of the vaccine-injured kids instead of sitting around fuming every time this issues presents itself.

A Million or More of Hush Money?

Larry King Live tonight was dismal. There was the lawyer sitting next to the parents who basically said that they don't know what caused their child's autism, maybe it was the vaccines, but they thought people should still get get their children vaccinated. No mention by them of safe schedules, no mention by them of taking the crap out of the vaccines, no mention of ...anything. They seemed kind of drugged to me, almost as if they had nothing to say. And, that makes me suspicious.

They are interviewing the wrong doctors. The general public who has no association with any loved one with autism still has no idea what is really going on. Where is Dr. Bradstreet who has testified countless times in court. I know of one case where he did a spinal tap and the Measles virus was found. Where did they dig up these other doctors besides Gupta? Where is the DAN! point of view? The doctor who apparently believed in a link between vaccines and autism, really did not have much to say, either. In fact, he and the Polings themselves acted like they had undergone lobotomies right before the show aired.

I expected something radical, groundbreaking. This was just more of the same old tired statements. Same shit, different day.

Obviously the national media does not report what is really going on, and are hurting rather helping the autism community. I remember why I turned my TV off. I only tune in when other people call me and tell me something regarding vaccines or autism is going to be on. I think I will stop doing that. I need to preserve my energy for the care of my son. I have been bomarded with enough negative energy to last a lifetime.

Always when I spout off about the extra crap (antifreeze, MSG, etc.) that is now in the vaccines, people say they got vaccines when they were children and they turned out okay. This really burns me up because we know that the CDC has increased the amount of vaccines they give to a child, with the intention of helping the child. Why aren't the children who DIE within days of vaccines in the news? Did you know that the CDC calls these deaths SIDS-related?

Why don't we have the information placed side by side whenever someone brings up this issue. We have a list of current vaccination schedules and ingredients. Where are the ones from the other years? Why was that not presented? It never is. That is information I would want to know if I was a parent trying to make a decision about vaccines. Give me some facts, not that same pat answer by the CDC about studies showing there is no link.

Screw the studies and look at all of these kids! Something is terribly WRONG. Autism is an EPIDEMIC of untold proportions. It is becoming like AIDS which was ignored and discounted for years. I don't buy into the gene theory. There are too many children being diagnosed for genes to mutate that fast. This is environmentally related.

And, here we go again, allowing erroneous information to be broadcast by the media; that thimerosol has been taken out of the vaccines. It is not true. Just go on over to The Age of Autism and read up. No one apparently is overseeing the thimerosol amounts in the vaccines. It is put in and supposedly taken out...yet who oversees controls that? Do they know how much is left? The FDA says they don't. The CDC says they don't.

Doesn't it also seem counterintuitive to look at the all of the viruses being injected into a four-month old baby and think it's okay? The Poling's child had 9 injections in one day.

I can only hope we elect a president who will get something done about this and even then who knows how long it will take. Research should have been started a long time ago.

And, this crap about not being able to go to court after three years?

We need 1,000 Jenny McCarthys.

I'm just sick of the whole issue.

Vaccination Court Trial on Larry King Live

The child who suffered a regressive encephelopthy after her immunization will be on Larry King Live tonight. Check your local listings.

Here is the press release regarding this.

BREAKING NEWS
Landmark Federal Court Concession That Local Child From Atlanta Developed Autism From Vaccines

Child joins parents in press conference about this historic result at Atlanta Federal Court House tomorrow.

Local couple from Atlanta will join with their 9 year old daughter, Hannah, in a press conference discussing their daughter's development of autism as a result of vaccines. This landmark case alleged that autism was caused by childhood vaccines and was scheduled to be heard as a test case before the concession was made.

The press conference will be held tomorrow, Thursday, March 6, 2008 at 11:30 am on the steps of U.S. Federal courthouse at 75 Spring Street in Atlanta, Georgia.

The Centers For Disease Control have estimated that 1 in 166 children have autism, and many have linked the autism epidemic in this country to the mercury based preservative used in childhood vaccines.

Media: Contact Todd Scott 12-564-4692, 516-312-6573 cell Note: “Evidence of Harm” author and journalist David Kirby is available to comment on this breaking news: 718-230-4250 – www.evidenceofharm.


Also, if you want to read about more details of that case, here is the link:

MEDIA Autism Payout Reignites Vaccine Controversy
http://www.newscientist.com/article/mg19726464.100-autism-payout-reignites-vaccine-controversy.html

Children's Deaths - Vaccine Related?

The highlighted areas are all my emphasis. How can you inject so many viruses in a 4-month old infant? I feel lucky to even have my child still with me.

Spokane

Shot in the dark
Heartbroken woman wonders if vaccines killed her infant son

By JoNel Aleccia Staff writer December 23, 2007

Federal health officials are reviewing whether routine immunizations contributed to the deaths of as many as three North Idaho babies this fall, a spokesman for the Centers for Disease Control and Prevention said this week. The agency has requested autopsy reports and medical records for at least two children and could seek them for a third Kootenai County infant, all of whom died in September and October, apparently within days of receiving recommended vaccines. There's no clear link between the vaccines and the deaths, which were classified as Sudden Infant Death Syndrome, or SIDS, said Curtis Allen, a spokesman for the CDC. "There is nothing so far to indicate that there is a particular problem other than these children died in the same city," Allen said. But the mother of one of the children said it's no coincidence that her 4-month-old son died within days of receiving injections to prevent serious childhood illnesses, including diphtheria, tetanus, pertussis, hepatitis B, polio, rotavirus and invasive pneumococcal disease.

"My baby was so healthy," said Shelly Walker, 39,of Hayden. "He was extremely full of life, energy and vitality." Nevertheless, early on the morning of Sept. 15, less than three days after Vance Vernon Walker received a round of vaccines at Lakeside Pediatric and Adolescent Medicine in Coeur d'Alene, his mother awoke to a nightmare.

"It was about 5:15 a.m. I woke up and thought, "He's not making any noise!" Walker recalled. "I went to pick him up and then I screamed." Her 16 1/2-pound boy was warm and his lips were still pink, but he wasn't moving. Blood was crusted beneath his eyes, and his clothes and toys were covered with a bloody froth. As her husband, Brian, 46, called 911, Walker worked frantically to resuscitate their child. But in the emergency room at Kootenai Medical Center, doctors said Vance had been dead for several hours.

"I grabbed my baby in my arms and held him up and I screamed, 'How in the hell did this happen?' "Walker said. "Was it the vaccines?"

Medical officials from the CDC and the federal Food and Drug Administration are working to answer that question for the Walkers and for families of two other babies who died within six weeks of each other. Two of the deaths have been logged in the voluntary Vaccine Adverse Event Reporting System–VAERS – jointly operated by the CDC and FDA, agency officials said. But Dr. Robert West, the Kootenai County coroner, confirmed that three infants died this fall within days of immunization. Parents of the other babies could not be reached for comment.

Autopsies failed to detect any specific vaccine reactions, West said, forcing a determination of SIDS– a "diagnosis of exclusion," he noted. He said he welcomes the federal review. "It is a little bit unusual but not totally unheard of," West said. "It deserves the investigative clout of the CDC."

Walker confirmed that her son's death was one of the Idaho cases reported to VAERS. The other reported child likely was also under the care of the Coeur d'Alene pediatric group, Allen said. That raises the possibility the children received vaccines from the same batch. If the CDC receives three reports of deaths or 10 reports of serious non-fatal injuries related to the same lot of a vaccine, it launches a review, Allensaid. In Vance Walker's case, the immunizations included a dose of Pediarix, a combined vaccine that contains DTaP, hepatitis B and inactivated polio vaccines. His mother's records indicate the lot number of the vaccine manufactured by GlaxoSmithKline was AC21B124B. He also received a dose of Prevnar, lot numberB54007C, a vaccine manufactured by Wyeth Pharmaceuticals. Allen, of the CDC, said it would be up to the medical practice to decide whether to suspend use of the vaccine. Dr. Brian Hickok, the pediatrician forWalker's son, did not return calls about the issue. A representative for the medical practice declined to comment.

Those two vaccines are the most likely to be implicated in any adverse events, said David Terzian,a Virginia lawyer who specializes in vaccine injury cases. Terzian said the Walkers have a good chance of receiving compensation for their son's death through a federal program because it occurred so soon after immunization, well within the 72 hours required by federal rules. Information provided by drug manufacturers and attached to the vaccines reports low numbers of associated deaths. In 14 clinical trials of Pediarix, five deaths were reported among 8,088 recipients ofthe vaccine, including two cases of SIDS. In a study of more than 34,000 children in which about half received Prevnar and half received a control vaccine, a dozen deaths, including five SIDS deaths, occurred in the Prevnar group. By contrast, 21 deaths occurred in the control group, including four SIDS deaths, according to manufacturer data. Immunization specialists acknowledge that any death following vaccination is a tragedy. But they emphasize that far more children died or fell ill in the era before vaccinations." (COP-OUT!!) For the most part, disease is always going to be more risky than getting a vaccine," said Nicole Pender, health educator for the immunization program at the Washington state Department of Health.

That is no comfort to Shelly Walker. She hopes her experience inspires parents to educate themselves about the risks of vaccines and prompts them to monitor any reaction, however slight. She plans to file a claim through the National Vaccine Injury Compensation Program, which provides a maximum of $250,000 after a vaccine-related death. In return, all records related to her son's injury and death will be sealed by the drug manufacturers. Walker is optimistic that they'll use the data to improve product safety so other families won't experience her tragedy."My hope is they're compiling data and statistics to make things better," she said. "I'm trying to believe in the inherent goodness of something here."

David Waddel Died Sept. 4, 2007
Vance Walker Died Sept. 15, 2007
Paiytu Ames Died Oct. 10, 2007

All from the same pediatricians office. YET IT'S UP TO THE PRACTICE WHETHER TO SUSPEND USE OF THE VACCINE OR NOT?!!!

Note to Self

The achievement of anything that you desire must be considered success, whether it is a trophy or money or relationships, or things. But if you will let your standard of success be your achievement of joy—everything else will fall easily into place. For in the finding of joy, you are finding vibrational alignment with the resources of the Universe.

*my emphasis

Excerpted from a workshop in “The Law of Attraction, The Basics of the Teachings of Abraham” on Saturday, July 1st, 2006

Potholes

So, we are in the new library. I am checking out a book when Liberty begins to giggle. The giggle turns into a belly laugh and he is just so tickled about something he can't stop. A couple of nice people that work at the library smile and ask me if someone is in a good mood today. Kindness - I need that. The other older lady looks at Liberty sternly and says, "Sshhh...you need to settle down now. Be quiet." He laughs harder. She seems very irritated as I tell Liberty to be quiet. Yeah, sure mom. She makes a remark about him probably having way too much sugar today. I look at her and say, "He doesn't eat sugar." She says, "Oh, well...." She continues to almost reprimand Liberty, and I say, "My son has autism. He probably does not understand a word you are saying." That shuts her up. All she can say is, "Oh, I'm sorry." But, it is that PITY that gets me, and that urge to hustle us out of the sacred library, where, I might add, there is NO ONE because they are getting ready to close. Why not just let him be, for God's sake?

I am tempted to launch into the mechanics of autism, the gut-brain connection, the yeast...nah, it would be lost on her. Why should I have to explain anyway? Why? I usually don't tell people Liberty has autism until something like this happens or someone persistently tries to get him to answer them.

Mrs. StraightLace represents the general public, I'm afraid. She sees just another child with no manners, another one who does not fit in. Liberty looks "normal" and is so tall for a five year old people do expect more of him. But, try to talk to him and he breaks out into a 2-year-old's gibberish, at which people look at him strangely and back away. They back away from my good-looking little boy who was born perfect and who became brain damaged by a vaccine and my heart breaks over and over again. I am reminded of the nightmare I live everyday and I still can't believe it happened to us. To our family. To our precious child.

A good day has now turned into a bad one. I feel how much we are strangers in our world. We don't fit. He doesn't fit. All of the fears rise up like demons, all of that gunk you think you've risen above and moved on from. I'm in tears as I leave the library for home.

When is a giggle just a giggle and not yeast-related for God's sake? I forget what a normal 5-year-old boy does besides talk. I am not sure what he understands anymore. I am not sure of anything. When I do try to talk to him, all he does is fiddle with my seams obsessively and make noises. He still tries to drag me everywhere. So much for progress with signs. His school thinks he has made progress. Oh, please. I should have had someone in this house helping me every day. I should have gone the ABA way two years ago. Should have been more aggressive.

Coulda, shoulda, woulda. Again.

I am suddenly reminded of how mentally and physically exhausted I am. Maybe that is why I spend time in nostalgia. Maybe it's not related to midlife, but instead just a remembrance of a life gone by. I remember what life was like before all of this; what I was like.

This morning, I was cooking a favorite old recipe of chili beans that my mother used to make for us, that happens to be one of Liberty's staples. I was cooking it ahead to freeze like I always do for some of his meals. The smell of it cooking reminded me of a time when Lib was just a baby. It was autumn and we lived in the old fifties style house with the giant kitchen and the playroom that adjoined it where I could keep my eye on him as I cooked. Such a sweet time. The time before all of the trouble started. He was just my little son and we had wonderful days together then, back when he still nursed and took naps and ate everything that I cooked for supper. It was such a short time as we got the diagnosis at 20 months of age. That memory is now brown around the edges. Everything is in sepia tones. Precious days, gone now.

I will never forget the day that baby was labeled "disabled" by the government. Life became surreal then.

I saw another mom in the library on her way out that I used to know. She, with her two adorable normal children. Me, with my adorable but strangely behaving child. I avoided her like the plague. She would not have recognized me. When she knew me, I was about the size of a toothpick, wearing fashionable clothing. Now, with the extra 30 lbs, the extra wrinkles, the sloppy clothes...I'm sure she would not have even known me now. It would have been too painful to see the shock in her eyes. I'm just a tired mom of an autistic child who can't seem to quite put herself back together again. I think the only ones who really get that are other moms just like me. For those of you reading this, my hat's off to you, too. It's a tough road, but we keep on going for our kids.

I apologize for this being so depressing, but at the same time I'm not deleting it. I allow myself some wallowing time. Because this is the reality of it. It's great to see people who are "fighters" and doing all this stuff for their kids and I appreciate that. I have my own techniques for staying above the pain. But, I also appreciate it when someone .... one of US ... tells it like it really is. I need to acknowledge this part of the trip, too. I have to acknowledge it, so I can feel it and then let it go.

Oh well, it's just another pothole in the road. I will climb out of it. I will spend time finding thoughts that feel better and better to me until I find relief, and once again, I will be back in the driver's seat, talking to other moms, recording what I see each day, giving supplements, trying to help my child function in this world the best that he can. Being hopeful. Having faith. I will look through the lenses of what my child IS doing rather than what he is not doing, I will somehow put it all in perspective again.

But tonight, I'm hanging it all up like a tired, ratty old bathrobe. I will be reading a book, or doing a puzzle and placing my attention on anything...anything other than autism.

We must get rid of these combination vaccinations!

Kids vaccine linked to fever, seizures By MIKE STOBBE,AP Medical Writer Wed Feb 27, 8:28 PM ETATLANTA -

Children suffered higher rates of fever-related convulsions when they got a Merck & Co.combination vaccine instead of two separate shots, according to a new study presented Wednesday. The results prompted a federal advisory panel on vaccines to water down their preference for the combovaccine ProQuad, which protects against measles, mumps and rubella as well as chickenpox.In the study of children ages 12 months through 23 months, the rate of seizures was twice as high in toddlers who got ProQuad, compared with those who got one shot for chickenpox and one for the three other diseases. The risk translates to about one extra case of convulsion for every 2,000 doses of ProQuad given said Dr. Nicola Klein, who lead the federally funded study. She presented the data at a meeting of the AdvisoryCommittee on Immunization Practices. The study focused on children who develop fevers and then go into convulsions — an occurrence that frightens parents but usually has no lingering consequences. There were no deaths in the new study.

ProQuad was licensed in 2005. It's been in extremely short supply since last year, when Merck suspended production because of manufacturing problems. The company expects to resume ProQuad production next year. The panel had previously taken a position that they preferred doctors give children as few needlesticks as possible, and that ProQuad is preferable to giving separate shots. It voted Wednesday to amend that, to say they're no longer voicing a preference for ProQuad over the separate shots. "Safety, shortages, delivery issues — lots of reasons not to state such a strong preference," said member panel Patsy Stinchfield, an infectious disease expert at Children's Hospitals and Clinics of Minnesota. Merck officials said their own research, though preliminary, also showed a doubling of the risk in children within five to 12 days of vaccination. However, the occurrence was low — about 5 cases in 10,000, Merck officials said. They said there was five times more chickenpox antigen, the key ingredient, in the ProQuad shot than in the stand-alone chickenpox shot. But they said it's not clear that would explain the difference in seizure rates. For some reason, the difference disappears when comparing rates for 30 days, Merck officials added. Klein's research checked seizure rates only at seven to 10 days after vaccination, and looked at about 43,000 kids who got ProQuad and 315,000 who got the two other shots together. It found fever-related seizures occurred at a rate of 9 per 10,000 children vaccinated with ProQuad, compared with 4 per 10,000 for those who got separate shots.

Klein is co-director of Kaiser Permanente Vaccine Study Center in Oakland, Calif., one of seven sites in the study. Her work was funded by the U.S. Centers for Disease Control and Prevention. ProQuad costs $124 per dose, about the same as the two other shots combined.

Curiouser and Curiouser

When you are treating a child biomedically, and at the same time trying other modalities such at therapeutic listening and trying to distinguish what is working and what is not,( i.e. where in the heck the strange behaviors are coming from) you begin to feel like you're talking to these guys all of the time. If THIS is the advising committee in my head, I'm in trouble. I'm afraid this is exactly what it feels like, folks. That's me at the head of the table, by the way. The one filtering and sorting through all of the various opinions of the voices in my head. Can you see the concentration on my face, thinking, "What the heck IS this..."

A Mad Tea Party, indeed. Time to wake up the doormouse and have him tell us a story.

I had posted before about testing Liberty for PANDAS which involves basically having Strep titers drawn. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. Geez Louise. That's enough to scare anybody. Apparently, some kids get some odd symptoms right after a Strep infection. They develop things like tics and obsessive behavior, apparently from elevated Strep antibodies.

On our last appointment, I mentioned to Dr. Bock that Liberty had developed what I felt was an obsession with the seams in his shirts, and the seams in anyone else's clothing. He also had a high pitched barky sound he began to make on occasion, and then recently he began covering his ears (at no sound detectable), extreme sensitivity to light and some new eye blinking which could be seen as a tic. Also, I have posted before about Lib (and me) not sleeping through the night. If you go to the website on PANDAS you will find many of these behaviors including "sleep disturbance" could fit this syndrome.

Oh yes, but today I am reminded once again, that things are not always what they seem!

First of all, after finally getting a hold of a human being at the doctor's office and wrangling with the lab here to fax the results again, I got an answer on the PANDAS - the second part of the test we were waiting for called the "DNASE" was negative!

Meanwhile, Liberty has been in a Therapeutic Listening program since last March. There are a few different kinds of programs out there, this one is through a company called Vital Links. Basically, it involves putting on a special pair of headphones and listening to CDs tailored to the child's needs and all of this being overseen by an occupational therapist. In this particular program, Liberty listens to a CD for 2 weeks (twice a day for 30 mins) for 5-7 days, then switches to another CD for another 2 weeks, and alternates for a period of 12 weeks. Then we stop for two weeks and evaluate any progress or lack of it. The CDs they use in the program are incredible. I mean, who knew you could tailor sound for things like body coordination and social skills? Some of the CDs are Mozart, some are jazzy, some are nature sounds and they are all done in a special recording studio.

Anyway, Therapeutic Listening helps a child with auditory processing problems as well as visual processing problems and I always felt APD was a big factor with Liberty.

Having said all of that, I never dreamed that his symptoms were probably being produced by his Therapeutic Listening. When I saw him begin to cover his ears, I decided to stop the listening program for a little while until I figured out what was going on. Apparently, that was not the right thing to do. It did eventually occur to me that something could be going on with the Therapeutic Listening because the last time we took a break, he developed toe walking and spinning, but when he began again, the symptoms promptly went away and his therapists and teachers remarked on how well he was doing.

Now, I had put in a call to my OT but could never get her to return my call. So in the past two weeks of trying to phone her and get her input, I was spinning in circles with the new possible PANDAS diagnosis, and also wondering if the Diflucan which we are still on might be causing something. Or, if perhaps there was something in his 10 supplements that was the culprit. So, I stopped those and began them over again slowly. Then I wondered if stopping those suddenly did something to mess him up. See where the mind goes? Round and round in a circle game.

When I finally got a hold of my OT, do you know what she said? She said she "spilled a Coke on my phone number" and forgot to call me. Now, she has our records on file. Do you think she might have looked up my phone number? Asked the secretary? We went to see her in the office almost every day last summer. I was left speechless. I cannot imagine saying that to anyone!

When I described to her what was happening to Liberty, including the fiddling with his seams, she casually said, "Oh yes, that is quite common. Remember me telling you about the tactile problems that can develop?" No, I really did not log that into my memory if she did tell me. She said that, many times these symptoms mean that what we are doing is working. She said that he is being bombarded with sensory stimulation. She said that a newborn baby hears sounds all at once and has to learn to differentiate his mother's voice and other sounds that are important and let the others fade to the background. She said Lib is covering his ears because he has this new sensitivity because he is probably processing like he has not done before. The air conditioning that I tune out could be suddenly deafening to him, according to her. She told me to try lowering my voice, changing the bass and treble on the tv, etc. She is great at explaining it all to me but getting in touch with her, for some reason, is difficult. There is only one other person in town qualified to administer the program and she has a waiting list three miles long.

Then I thought, perhaps his CDs helped his body awareness and that is why he suddenly is potty training. His therapists thinks so. Oh did I not shout that one out? LIB IS POTTY TRAINING HIMSELF! One day, he used the potty at school repeatedly and then he did at home. I had him in underwear all weekend, traveling here and there in the car, with only one or two accidents at home. It really is phenomenal. I have to look back in my notes...was it only one week or so ago? Now, he is doing this like he's done it forever.

But, wait, how much of these symptoms and/or progress can be attributed to the antifungal, Diflucan - look at what phenomenal success Jenny McCarthy had with her son and getting rid of yeast. Look at the unbelievable yeast die-off Liberty went through.

Also, there is the MB-12 shots we restarted at the correct dose.

Can anyone really know how it's all playing out?

This is tough work. I feel like a detective and I truly understand now why the logo for autism is a puzzle piece. What is so exhausting about it is, you have to really scrutinize and take notes. When the doctor asks you if you see a correlation between sleeping through the night and the antibiotics his pediatrician just put him on for a blossoming ear infection, you have to be able to say yes or no. I mean, I have pretty great intuition, but not when I'm exhausted. Notes help.

I also now have developed very painful TMJ. Not suprising. A little stored anger and tension.

This afternoon, I spoke with the nurse today from Dr. Bock's office. She told me that oftentimes, covering the ears and being suddenly sensitive to light and sound, etc. can mean that detoxification from metals is happening. Again, one more possibility thrown into the ring.

So, it could be ANYTHING.

Perhaps I need to get a psychic involved in the works, add her to the TEAM of Super Sleuths.

No, wait, they are more expensive than the DAN! doctors.

Hey y'all, Wanna Rally?

Well, Jenny McCarthy is organizing a rally in front of the CDC in June!! Here is the link to sign up to participate. Atlanta is only about 5 hours from us, but don't know if we can make it. This would be one of those chances of a lifetime to at least feel like your voice was heard, like you said your piece, and to participate with many like-minded others, parents and other affected family members, friends, and researchers. I think we will give it our best shot to go, after all Jenny is begging for a turnout and she deserves it. WE DESERVE IT.

http://www.talkaboutcuringautism.org/jenny/cdc-rally/index.htm

On another note (only remotely related by Jim Carey, Jenny's partner) the author of the book A New Earth will be on Oprah next week, and Jim and Jenny are going to be on today to talk about the new world that is now coming into being. If you have not read any of Tolle's books, do yourself a favor:

http://www.eckharttolle.com/

Oprah is actually teaching an online class you can sign up for with Tolle in March. Details here

http://www2.oprah.com/index.jhtml

These are just two of the many events happening today that are pointing indeed to some new, exciting, healthy changes, expansion in consciousness, (let's hope), and the birth of a whole new kind of world.

What It Could Be Like to Have Autism

This was sent to me by a new friend I met through my blog. The website credit is below. I thought it was particularly beautiful and insightful.

An essay written by a 16 year old with Autism (the exact transcription)

What I hear is quiet, and relaxing. The warmth of the surroundings is welcoming. The farm is like a little peace of heaven. When I am on the farm I can be me. I can run fast, far, and free. I can climb like a monkey and fish like a man. No one has to know how different I am. On the farm you can be anything.

I sleep in bed with the moonlight shining in. It is golden and bright. It brings with it the protection of a worn, well tattered, well loved old, faded blanket. It shines like a light that is coming to carry me away. It hits the side of the red brick house with purpose and furasity. Moonlight is welcome to visit me anytime. The warmth it brings makes me feel protected and normal. The beams come visit me just like anyone else. I can pretend to be just another kid who sees the same moon, only with autistic eyes.

I love the water. Any kind, even the murky, dirty, grotesque slimy water of the creek. The creek exists on its own and accepts the fact that its beauty lies within it, unseen by the eye of men. I can associate with this. My inside is deep, dark and murky. I share secrets with the water. I feel accepted by the creek for the creature that I am. No judgement does take place between us.

Stillness and peacefulness surround me. Old, worn, well traveled brick streets that have seen a lot welcome me to the weekend getaway. They have seen much before me, and will see much after me. As I walk streets, I hold dear the knowledge that I am just a heavy weight traveling to and from. My destination and purpose matter not. I am just passing threw like socks on their way to the washing machine. Each sock is washed the same whether on the right foot or the left.

Wild and free, overgrown and untamed, the soft green field is alive. It does as it wishes, it does not meet expectations placed on it. I am nothing that the field is and it is everything that I want to be. I don't, I can't, I won't. I can only pretend to be the delightful and mindful Joey.

Yes, I am different. I struggle to be me, the average american teen. I am not, have not, and will never be, such a form filled, cutout mold filling teen. This is not to say that I do not want to fit in. I do, I just have to pretend. My isolated world is terrifying. When I am on the farm, I escape the reality of my world and blend into the big picture, invisible, and for a short while incognito. I can be whomever, Tom, Dick, or Harry. The farm offers without judgement a place to escape to a world I desperately want to belong to.

http://www.webpediatrics.com/autism.html