Autism Speaks Sued for Discriminatory Treatment Based on Disability
HHS Secretary Sebelius' Disconnect With Reality of Autism Clear at IACC

The Truth Behind The Lies Play By Play from IACC Meeting

LiesBy LJ Goes

“Just  more BS…some guy says good luck…no way Congress is giving more money…”

“What now? I’m dying here.”

“…Geri (Dawson) now.  Liked her intro statements”

This is my friend, and fellow Co-Founder of The Thinking Moms’ Revolution, Kim Spencer and me, exchanging texts on Tuesday morning, July 10th, 2012.  She was giving me the play by play from the live stream feed of the IACC proceedings taking place in Washington, D.C. while my husband, our two sons, Liam and Noah, and I languished in yet another hospital waiting room in yet another state, awaiting time with a team of the country’s top research physicians. While most families make their yearly pilgrimage to Disney or take a road trip out west, we pile our kids into the car and head to Children’s hospitals. Our son Noah is quite ill and suffers from a misdiagnosis of autism.   Since the day he received his label we have been unable to get him sufficient medical care for his bowel disease, mitochondrial dysfunction,  autoimmune illness and central nervous system damage—all very common conditions in most children with “autism” that go undetected, untreated and ignored because of their iatrogenic nature.   

The IACC, about which we were texting, is the Interagency Autism Coordinating Committee.  They are supposed to be the best and brightest of our country who’ve come together to resolve an inconvenient and expensive  problem sweeping the nation.   The CDC recently reported that 1 in 88 kids have autism.  Many of the folks who brought that statistic to the public have some form of interaction or involvement with the IACC.  Sadly, they did not mention they’ve not bothered counting kids under twelve.  So when they say 1 in 88, they mean tweens and up…not actual children.   So, so far, we know they do not share humanity’s common definition of the word “children” and they do not know how to count. Yet somehow, they have been charged with ending the autism epidemic.   As you may suspect, we are not off to a good start.

Kim:  More BS…

Me:  What are they saying?! 

Kim:  (Department of Health and Human Services Head) Kathleen (Sebelius) saying she is not Sebelius pink jacket personally affected by autism?  Saying…everyone has done a great  job…

I was positioning my fingers to hammer out, “WT..."   when we finally got called back.  Our first two doctors were outstanding.  The metabolic geneticist was an absolute gem.  I make sure physicians read Noah’s labs in front of me because I have learned from experience they will be thrown into a pile and ignored otherwise.   He read them, commented and (special bonus!) asked questions.  He asked me if I saw a decline in Noah’s condition after vaccination and nodded sympathetically when I answered.  At the end of the day he is still a mainstream physician who cannot confirm or deny the medical reality of autism.  He’s just a cog in the wheel, helping the kids who meet certain criteria approved of by insurance and pharmaceutical companies, alike.  Lesser affected kids (whose parents were smart enough to stop vaccinating at the onset of symptoms) have probably greatly benefited from his knowledge.  He recommended a battery of tests and concluded our time together by asking us if we’ve ever suffered migraines.  “Well, for Noah, imagine that migraine is on-going and its taking place all over his body.”   While I found his empathy refreshing, it’s not what I need.  I need help.  I need to stop his pain. I am not in need of new ways to describe it. I need competent, inquisitive, effective, FEARLESS medical expertise.  In other words, I need doctors who are not pharma’s b*tches. Let’s get the tests done and get on it.  I. NEED. ANSWERS. NOW!  MY CHILD IS SUFFERING.

Next doctor please.

Noah’s anxiety was getting worse, his screaming and slaps, while constant, had grown particularly disturbing to those in the office and waiting room. The nursing staff took pity on us.  They brought us toys which Noah threw back at them.  They offered GMO juice, crackers and cookies which I threw back at them. 

Doctor number 2, the pediatric neurologist and main attraction, arrived.  He took a detailed history and had mostly bad news to offer.  Many more tests were required, many we will have to pay for out of pocket, and if it these tests  do confirm he suffers the particular type of neurological damage we all suspect…the  recommended treatment often makes children more aggressive. I inquired about Noah’s ongoing bowel issues and he asked us if we could stay and see their resident gastroenterologist.  While he had a reputation for treating bowel disease “conservatively” he thought it was worth us visiting with him. We agreed.  After all, we’d come all this way and they are specialists here. The best of the best…

Red phoneWhile we waited for the gastro nurse my phone was on fire with emails and Facebook posts—commentary about the IACC.

“They are actually congratulating themselves on a job well done...doesn’t matter what the parents say. They actually said it doesn’t matter.  The parents will say we didn’t do our job…but we did a great job…”

“I could cry. So disconnected…actually glad you cannot see this right now...”  

“OMG, Merck exec appointed to the IACC?! Did you know this? Holy Sh*t!  What are they doing?”

After 4 and a half hours Noah had reached his threshold and the gastro nurse was having a hard time getting comfortable in the chair she’d asked Liam to vacate. Her way of handling it was to wince painfully just a tad more dramatically than the tone or impact of Noah’s screams and slaps warranted.  Because of the seating limitations I had no choice but to hover over her, watching as his story played out on the limited horizontal lines medical forms provide.  Like so many children with iatrogenic illness his story is over 4,000 pages at this point.  How does one condense it to a page and expect the transcriber to understand?  I wanted so badly to tell her the whole truth, but with these people—you can’t just spew your story. Every word has to be deliberately chosen. You have to use words like “immune compromise,” and “food sensitivities”.  Code words for, after his 12 months shots his brain, immune system, bowels, and central nervous system imploded. Could you please, PLEASE give a sh*t?!

Nurse with shot“Now mom…you put him on something called the SCD diet?”  She scrunched up her face and pinched her perfectly manicured nails together.  “What’s thaaay-t?” 

“The therapy he’s on—you call that ABA?  What does that stand for now?  Noah screamed and pulled my hair, causing her to wince and rub her temple.  “Do you get him any therapy, like speech and OT?” I sincerely had the hardest time determining if she was for real or if I was just having autism mom hallucinations. Maybe she was new?  The optimist in me was trying to find the positive while the realist began to piece it together.  They did not appear to be autism specialists, at all.  They simply tolerate children with autism in their practice.  Big, BIG difference.

 “All his vaccinations are up to date mom?” 

“No. He had a reaction to DTap.”  “Yes,” Dave added, and the MMR.”   That. Is what. We said.  This is what she wrote:

 “Mom stopped vaccinating at 3 years.” 

I glanced over at the counter where my phone vibrated beside the seated nurse's ear.  

“All they give a f#%k about is the Genome Project.  Helping kids get better isn’t even on their radar.  There’s no money in healing kids. They are clueless.  I could vomit right now…cannot watch another minute. They…don’t care about the damage done, just the money to be made.”

This, for all autism parents who’ve done their homework, is the defining moment. It was a two day trip getting here; we had such measured positive interactions with the other docs. I just didn’t know if I should risk correcting her and being labeled an anti-vaccination parent.  Plus, I hadn’t seen the gastro yet.  He could be a rock star doc operating under the radar who understands the real science behind autistic entercolitis and I would miss out on him because I lost it with her.  I have a responsibility to this movement to identify and endorse the doctors who are really helping our kids.  But yet, I wanted to b*tch slap the arrogance out of this poptart so badly.   

ClooneyThe super dapper gastro entered the room, saving me from myself. Noah's file and pleasantries were exchanged.   The doc said he didn’t have our records as this was an unscheduled visit. For the record, I brought all our gastro/food allergy/sensitivity tests and documentation.  Complete with doctor’s interpretations. Without considering this, he interviewed us and ventured a hypothesis. Despite all Noah’s obvious auto-inflammatory issues, central nervous system failings and neurological damage, he thought that maybe it was…

Toddler Diarrhea

To his credit, he was honest and said that that simply meant, “We don’t know what’s causing it.”  But, not to worry, “they often outgrow it”. He chuckled.   

“Noah will be 6 in September.” I calmly stated. “We are unable to potty train him because of the ADHD-ritalin-children-diagnosedunstable nature of his bowels."

He closed by suggesting I return soy to his diet (after I told him we’d had him tested by two different physicians whose evaluations showed an extreme sensitivity to soy).  Dr. Gastro also wondered if we had considered pursuing an ADHD diagnosis.  Psyche meds would probably help a child like Noah a lot.  He just knew they would.

Next, Noah was restrained for a period of 14 minutes to have his blood drained.  My husband held him down while four nurses worked to find and puncture his veins.  He screamed and fought, predictably  breaking blood vessels in his eyes.  I seethed as Liam covered his ears and cried.  “What are they doing mommy?”  A grandmother and father on opposite sides of the waiting room wept openly.  The grandmother came over and asked me about his diagnosis.  I very loudly stated, “He was vaccine injured.”  “Oh my!”  She put her wizened hand to her lips and her tears flowed like faucet water.  For some reason, I was just too pissed off at the gastro and his nurse to cry.  I have cried an ocean of hot tears for my son over the past 5 years.  Now?  I’m ready to fight.  She laid her hands on me and prayed. While this may offend some, I found it quite comforting.  She was truly devastated, hearing a sweet innocent boy suffer in a way that conveyed his personal hell so vividly.  So, she did what came naturally to her in the presence of human suffering.  Dave emerged, fatigued and exasperated.   The receptionist witnessed the whole thing.  She offered me her hand as I signed the exit paperwork.  “I am so, so sorry.  God bless you.”  She said—and she meant it. 

We grabbed our vials of blood and headed for the nearest FedEx.  It is common knowledge among research physicians and their patients that you cannot trust hospital labs to take care of these sorts of tests—tests outside the mainstream, tests that are not covered by insurance—tests that are incriminating. They get misread, mislabeled and lost.  So, we dutifully shipped them along with our personal checks to the universities who are researching the reality of this epidemic (until pharma catches wind of them and shuts them down). 

To date we have one voice--potentially two--on the IACC.  The goal of the Genome Project is to identify a genetic predisposition for autism (which has already been identified via biomarkers by  Dr. Ken Bock).  This project will help would-be parents whose potential children may be vulnerable to ASDs, terminate their fetuses.  It does not help children living with autism.  It does not help parents trying to earn a living and care for them.  It does not help our country mitigate the extraordinary financial cost of what is to come when the next generation of kids (who’ve received the experimental Hepatitis A) reach kindergarten age (this year!) and cannot be educated in conventional school settings.  Many, if not most of them, will still delight in Chicka Chicka Boom Boom and Barney when they are of age to take their first legal drink.

So, as summer trips are in full swing, and you question whether it was the right decision to take the road trip over the cruise,  I had to decide between visiting  out of state doctors our son had waited a year and a half for, or flying to Washington for a press conference aimed at exposing the IACC's ineffectiveness. I tell ya, I sure as hell wish I was still in your shoes making your decisions instead of mine.  But, I'm not...and at the end of the day...I sincerely do not want you to end up like me. Do the research about vaccines and autism yourself--ahead of time! Please read the studies and healthcare legislation, yourself.  Read the MSD sheets you are given at the time of vaccination.  Question. Question. Question. Discover the truth beneath the lies so you can make truly  informed decisions for your child.  If you are a parent with an affected child but you are not yet involved please consider joining us at The Canary Party and The Thinking Moms' Revolution.  We have a lot of work to do. 

Lisa Joyce Goes is Vice President of Public Relations for The Thinking Moms’ Revolution www.thinkingmomsrevolution.com, a Contributing Editor for Age of Autism, and National Executive Board Member of the Canary Party www.canaryparty.org

 

Comments

PaFatherASD

LJ.... Do you know Kate, the mother of Noah from PrayingforNoah.com? Kate's Noah also is around 6 and has Mito disease.

Liora Pearlman

Find a DAN! Doctor! Go to Thoughtful House in TX! There are people all over the place to help your child. I had a kid with admittedly mild case of PDD NOS (we did stop vaccinating after her two month round gave her a very bad reaction) but it took me two years of FULL TIME RESEARCHING and dosing. Autism-Mercury yahoo group is a great place to start. There, I learned about PANDAS, anti-viral and bacterial protocols, healing the gut, and finally CHELATION the safe low oral dose way (DMSA first, many rounds, then add in ALA later) Liora in Beijing, 8.5 year old girl now a ballet dancer. (healed her age 3y2m to 5.5)

Martha Moyer

My son age 38 with autism, IDD and multiple other issues including neurogenic bowel disorder has found a solution to his inability to relieve his bowels. He has had megacolon issues to the point where the elasticity of the muscles in his bowels do not do the job anymore.

So much for all the remedies...check www.piemed.com and this cleanout procedure has saved my son's life.

We tried every laxative; every remedy out there; this works!

barbaraj

I read something yesterday, a "friendly" neighbor wrote how she feels she should call child protective services on a friend who devotes far too much attention on her disabled four year old, leaving the baby to be only bathed ,fed, and offered a playpen. "She went on to say" that THIS FAMILY had the option of putting the child in a facility, there was a discernible sigh of disgust in her writing ,after all they had a choice ! The response was , yes, call protective services, these people are neglecting their baby! ..from experience I don't believe I did that well, my babies may have skipped a bath, skipped a few story books, maybe left to their own devices a LOT, yet they do well in school, have friends, play sports, are creative and even win awards for citizenship. They didn't have a storybook life, still don't,but since when does not getting your share make for a lesser person? I live in the shadow of Johns Hopkins, I have all of the best minds at arms reach, and I would rather take them to a vet than get anymore involved with their mainstreamed ,pol parroting of pharmaceutical info,brainwashed doctoring, that seems to extend to the families creating a "do good" policing neighbor like that "friend". From doc to doc, from office to office nothing changes. When I hear "they outgrow it", I get it, they often do, in our family we have outgrown some of the more disturbing behaviors, but the damage is there. When I asked my nephew to look at the camera, he said, do I have to? I see two when I look straight ahead, only one with my peripheral. DAMN, can you imagine the fear of a two year old when suddenly he can't look at an object for play, one that he played with two weeks ago, and yet this is sooo common among children with autism and sooo ignored. How horrible it must be to have horrific headaches, tummy aches that become part of your daily existence? Yet, offer them a pill for depression or aggression, try to make them "buck up" to the pain is the "tried and true" mainstream method. It's all so wrong. So now I'M PARANOID, I'm guessing that would be my diagnosis, I fear that if my children get anything "preventable" they will receive dangerous substandard care. Like the doc who forced tylenol and tamiflu into my child's mouth because he hadn't been vaccinated against the flu. My new course of action is to take my kids at night, or weekends to a fast clinic, answer yes to did they have all of their vaccines, and go from there. All of the hopefuls, the docs who seemed to care, are fearful of being "wakefielded" leaving less hope than just a few years ago. Powerful incentive for joining the liars! and a pretty simplistic mind control method.

Sarah

LJ Goes says: "All they give a f#%k about is the Genome Project". exactly. Our kids are merely a means to an end which is why they want our kids DNA as part of genetic cleansing. They have zero interest in helping our kids get well. Our kids reinforce their goal the eliminate who they deem unfit from the gene pool. social dwarwinsm. eugenics disguised as scientific advancement.

Amanda Blinn

Kathy Blanco--we do learn from you. I've been reading your posts here for years and we are so so so into biomed. Our son is 15--right on the big coming wave of those injured in 1996. Thank you for continuing to post. I pray for you and your son. You've been through this longer than any of us. Thank you for continuing to blaze the trail for our always-little-ones. Amanda

Mary W Maxwell

How does he know that your child's experience feel like a migraine? Is there something he knows, that we are not aware of? I've heard from the military that water-boarding does wonders to extract information from people....
Lisa, please read my book, Prosecution for Treason. Amazon sells it for 5 bucks. Or if you send me yr address i will give you a copy. (email me: mary.maxwell at alumni.adelaide.edu.au)

Susie

LJ,

I'm so sorry you had to endure that crap. I have gotten into shouting matches with doctors, there is no white coat syndrome for me when it comes to doctors trying to feed me bullcrap about my kid and looking down their nose at me when I know more about what's going on with my kid than they do. My husband was actually afraid that I was going to punch one of them. And, this was the head of the ped. GI dept. at Children's in Chicago.

Please look into asdcenters (the Geier's clinics). They know that most kids with "autism" are vaccine injured. They saved my son from a lifetime of horrible aggression. Lupron has been a total lifesaver for my son and our family. All of their research is on their site. http://www.autismtreatmentclinics.com/ I can't say enough about the change in our family since Lupron.

Mary Kimberly

Lisa, I'm very interested in your comments about the Hep. A vaccine. We live in California where they have been giving it for about 10 years. My daughter received the first dose at 2 years old and the second at 2.5 and completely fell apart after that. I have tried to research a link between it and autism (or any side effects for that matter), but have not found anything. Can you point me to any links/websites with info? Thank you.

kathy blanco

Exactly why in desperation we are going to Mayo AFTER all our tests are done here...because I would have to face the same discrimination. After all tests are done, I hand it to them on a silver platter and tell them to be the brainiacs this time, instead of me. Lisa, consider doing pill cams. At least less invasive. My son now thirty is collapsing after years of seizures, mitochondrial collapse, surgery events which collapsed him further and an array of autonomic problems including the need to be pacemaker dependent. He will also be fitted for a VNS in December. Yes folks, if biomed is not applied from the GET GO...(no computers then folks), your child will decline into dementia, schizophrenia, alzheimers like illnesses. Multiple organs WILL fail. He is also into failure to thrive now, throwing up, losing hydration, losing weight. Antivirals, antibiotics, gut probiotics, diets, are not saving him...but could have if we started early. Learn from me.

Benedetta

Sebelius
Does not have anyone in her family with autism.
Is that right.
What about other autoimmune disesaes - free there too?
If so, is that because you told all your love ones and those you love to avoid the vaccines?

asneedsinterviewtraining


This may be a stupid question, BUT why does the IACC need a Merck Rep on board when everybody "Knows" vaccines, especially MMR and varivax, do NOT cause autism! Is he there to make sure they, "theoretically and scientifically never do!

Benedetta

Patrica;
It is telling us that perhaps the kids that are going to react to the MMR has a different flora of bacteria in the gut than others so it may be helpful to a parent to figure out their's it the one that should not get the shot.

Why is the flora different to begin with?

I don't have the answers but I found it interesting that Goes thinks it was the DTaP and her husband says he reacted to the MMR tooooooo.

Of course - we have them upping the mumps part, lowering the mumps part, raising it up again. We have whistle blowers coming forth and saying that the vaccine companies lied on the effeciency of the mumps vaccine; then we have Dr. Wakefield's tale of horror about the Aruba mumps strain !!!

patricia

http://www.digitaljournal.com/pr/802458

Is this link useful? It may not be news but it was a hopeful one to me.

Benedetta

Goes;
That is the way I see it too. You move heaven and earth to get to some hot shot group and it is a bust.
You behave when you really want to scratch thier eyes out.
By the time they get done with you -- you want to turn over the tropical fish tank on the way out.

The magriane question - did have an important reason behind it.

My son may have been non verbal when he was small - but it was pretty obvious he did have magraines. He would become ill and lay all day long in his dark room. If I went in and pulled up the black out curtian he would scream untill I closed it back. If it was getting into the second week (I was trying to teach at this time) I would try to get him packed and dress to be attended by his grandparents - he screamed the entire time -- once he screamed and cried in the car for 45 minutes. I thought he would have a stroke - so I turned the car around and went back home.

The epiplesy foundation and docs have only took a quarter of a century to link magrianes with autism.
God Bless or God Dam them I am not sure which.

Here is the link
http://www.epilepsy.com/newsletter/jul12/migraine_children?utm_source=Epilepsy+Therapy+Project&utm_campaign=ba0c2f7e2e-Epilepsy_News_7_18_12&utm_medium=email

Anne McElroy Dachel

Lisa, what a perfect example of the complete disconnect that exists between the real world and those who pretend to address autism.

Meanwhile back at IACC, Sebelius is saying, "I don’t have the personal experience that many of you have as either a diagnosed person with autism or a family member, so I don’t pretend to share that personal expertise."

And she can't say that she's ever spent the day with an autistic child as sick as your son either.

When Dr. Geraldine Dawson spoke she said, "We have seen the costs of autism increase from $35 billion annually to $137 billion annually and we know that the adults, who are moving from adolescence to adulthood are unemployed and socially isolated and they’re facing tremendous health problems–heart disease, obesity, and other health problems."

Heart disease and obesity among adults with autism?

What about your son and "his bowel disease, mitochondrial dysfunction, autoimmune illness and central nervous system damage"? More cover-up, more downplaying of the national disaster called autism.

Lyn Redwood ended her comments to Sebelius saying, "So we truly are in crisis mode and we desperately need your help."

And from her remarks, it's clear Sebelius and IACC are going to do nothing about it.

I'm with the grandmother in the waiting weeping openly. God bless you!

Shell Tzorfas

1 in 6 now have a Developmental Disability, 1 in 5 are now Neurologically Impaired and the only real change since our right to sue vaccine makers in regular courts was taken away is that children went from a few vaccines to between 70 to 80. A few years ago I would have stated that the first vaccine was given to babies 3 HOURS OLD. But that is no longer true. Now they vaccinate fetuses with thimerosal, a form of mercury since 2004. I have never seen any Autistic child recovered from an allopathic doctor. My recommendation is to change the course and find Naturopaths, homeopaths, art therapists, foodists, healers and anyone who frankly, "Gives a Damn.."

Sylvia

Lisa, once again you are able to capture with words the absurdity of a medical system that is obsolete and often criminaly dangerous to our children. Our beautiful and innocent children suffer - while they watch and shrug their shoulders and offer ridiculous suggestions. But some people get it, like the lady who prayed for you and your son. Such a pure and honest reaction. In such short supply nowadays. Especially at the IACC. Thank goodness for a couple of good and brave souls such as Lyn Redwood who try to make a ripple in that sea of corrruption and incompetence!

Parent

You have got to be kidding me . . . introduce soy back into his diet? I honestly don't know how you held it together. I truly don't.

These "physicians" sicken me to no end.

Lisa there are no words.

Donna L.

Thank you, LJ, for so accurately describing the ridiculous dance we all have to perform in order to attempt to get answers and appropriate treatment for our kids. New parents take note: not only will doctors not be able to fix what they do to your kids; they won't even bother to try.

Jill

Thank you Lisa Joyce. And yes, John Stone I completely agree with you. What is the point of hiding??? I just don't get it. Okay, just don't say where it comes from and HELP MY KID! You don't ever have to admit to me you did anything wrong......just freakin' HELP ME!!! The shell game goes around and around and around. My daughter turned 19 years old today. We brought her out of her "box" pulling her by her fingernails. We are out of money. For what we have paid out of pocket, we could have sent her to Harvard and some of Harvard grad school. We are lucky -- beyond lucky that she is about 75% recovered. She has gastro issues that we can't afford to fix. I am so sick of the pats on the back of the IACC and Autism Speaks....the very organizations that are supposed to be our knights in shining armor are really huge defensive linemen completely running down any of our efforts to get some HELP FOR OUR KIDS! Actually, they are killing us more with their INDIFFERENCE!! I don't know how people actually sat through the IACC meeting. I could hardly watch the videos. It just seems so freakin' useless and they blah blah blah about how great they are, then walk out of the room without looking back at the damaged families they are leaving behind. I thought the 3 billion dollar slap on the wrist for GSK would be a big deal, but it barely caused a ripple. What is going on with Wakefield's lawsuit? Maybe that will push things closer to critical mass ????? Hope can be a painful thing.

michelle

LJ, you are a strong woman - I thank God there are people like you around for our children. Thanks for sharing

tara mcmillan

I didn't get to speak at the iacc meeting, was planning on it, but we got stuck in Baltimore at johns Hopkins, my sons new gastro Dr was there early. I caught the comments at the end....they called my name twice. Thanks for writing about what you were doing while the iacc congradulted themselves.

John Stone

Why is there so much medical embarrassment over autism and GI problems if they are not connected by iatrogenic damage?

I am just trying to isolate the point: there is no rational reason for this behaviour unless they know what they are hiding. Of course, we've seen the NIH Buie et al papers which link autism/GI while trying to dissociate them from vaccine damage, but why does nobody believe him?

Alison MacNeil

You just said it right there - the contrast is a perfect illustration. Autism family going through tremendous lengths desperately trying to get decent help for their very sick child vs. the IACC with Sebelius congratulationg themselves endlessly for a job well done. Job well done? If the purpose is truly to get nothing done and to sit idly by while the Autism number skyrockets, families buckle under the pressure and tragedies increase by the day - yes, they have done a beautiful job.

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