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.