“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?!
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…
“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?!
“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.
The 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…
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.
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