Insanity Plea, or How to Deny Everything

So, we have the CDC, AAP, FDA, AMA, and SCA (Society for Creative Analysis, otherwise known as mainstream media) marketing the hell out of the genetics/better diagnosis angle for the cause of autism. Where are these people getting these ideas?

First, there has to be money to allow for the 'studies' being touted that assure the public that autism isn't also caused by the one thing that makes BILLIONS of dollars each year for a certain private sector industry. Then there has to be a way to keep mouths shut, more money to keep the talkers quiet. Oh yeah, if all the experts work for us, then they can't really speak against us. Problem is, we need people who are experts running the alphabet soup agencies.

Hmm, so what we do is rotate our employees through the government positions, get them to approve funding for the things we want, (like getting the government to purchase billions of dollars worth of medicines that aren't tested for safety or if they actually solve a particular problem) deny any possible negligence, and get the other branches of the government to approve laws that keep the public from suing us. Then rotate them back into the corporate fold, give them raises based on how well they did keeping the business working. Rinse and repeat.

Along comes the Patriot Act! Yay Patriot Act! Yay! We can sneak a BUNCH of legislation into that whopper of a bill and no one will look twice since we all want to be safe from terrorists, and anyone who actually wants to read the bill must be anti-american or a terrorist, so there. . .

Can you sense the sarcasm here!? The folks over at Naked Authors are all about sarcasm too.

Follow the Money

Okay, we've established the fact that my son regressed into autism. We've established that the recovery of my son is very expensive. Hmm, I guess we haven't established that yet.

My wife and I are both educated professionals. She has an MBA and I have been working in IT and graphic arts for more than 10 years and have an AAB and a Occupational Associates Degree, (which is basically a trade certificate). Right now, I'm working, (we've swapped off every few years to allow each other a break) and I make a fair amount of money. With what we spend on my son's treatments, supplements, and therapies, we're barely making ends meet. Can't give more specifics, but we don't have a retirement plan, only have emergency insurance for my son, (haven't found an insurance plan that covers ANY of our therapies, treatments, or supplements), basic insurance for me, (free with the company I'm with, but again doesn't cover most of the things we do to stay healthy), and my wife is flying without insurance at ALL! No 401K, no IRAs, about $500 in savings, give or take, we live paycheck to paycheck.

Now, as my son gets better, we've been able to give up some of his supplements, but most of the time, we just end up having to get something new that replaces the last thing, or we have to have some other therapy or procedure that costs thousands of dollars, (he's got to have dental work done now because his teeth are having problems, which will cost us around $3000).

Okay, so we're not completely broke, but this is expensive. I've also been reading "The Chelation Kid" a comic about a family with a boy on the spectrum. They've got the same issues we've got, but are having even worse problems paying the bills!

So let's move on to the whole Biomedical vs. Genetic issue. Follow the money!

First, for those in the cheap seats, here's the issue:

On the Biomedical side there are parents that believe the Autism has a biomedical cause, namely mercury, but I'm going to expand that to general environmental toxicity or in easy words, I think we're pooping in our own drinking water. This includes mercury in ANY form, which spews from coal-fired power plants, gets used in vaccinations via Thimerisol, (hence the vaccine issue), is in all of those new efficient light bulbs, and is used in the creation of munitions for our military, (mercury fulminate). Aluminum, which is used to 'whiten' all your white foods, like cream cheese, white american cheese they use at Subway, etc. If the food needs whitened, it has aluminum or titanium, (or both) in it.

Really.

Let's see. . . oh yeah. . . antimony, used in fire retardant for furniture, including baby mattresses. . . yep yours too. Look it up. It's right next to Arsenic on the periodic table. Hell, pull out an old chemistry book, flip to that periodic table and start reading off the elements, if you can read it, it's being used somewhere in the average household. Oh yeah, arsenic, used in treated lumber to keep bugs out. I'm not lying!

If you don't believe me, start reading labels!

On the other side is the CDC, FDA, (insert lots of acronym agencies here) and Legislative and Executive Branch of our government, (they get their own mention because they have been creating laws based on information from the other agencies). The official stance of our government is that Autism is caused genetically, and that the increase in diagnosis of cases in Autism is the wider definition of Autism and a wider recognition of the symptoms.

Huh?

So, another way for the government to say this is that we are experiencing a genetic epidemic. We'll look at the numbers for the epidemic in a minute.

If it's that the recognition has gone up, why not tell us where all of the 30 to 50 year old Autistic people that should exist are hidden if it's just better diagnosis. . .

Okay, the numbers for the genetic epidemic. . . hmm. . . wait, aren't those the same numbers collected by the CDC? Can we take a peek at those numbers? No? Why not?

Most of the key people working at the CDC have come from Pharmaceutical Companies! That's like making the executives from tobacco companies pay for their own research into the causes of cancer! Wait. . . didn't we do that already?

What about putting auto manufacturers in charge of safety testing their own vehicles! Wait. . .

I know. . . how about putting the inmates in charge of the mental hospital? Wait. . .

David Kirby's Article on Huffington Post

I had to interject this so that the few people that read this blog can check out some news from our world.

The Vaccine-Autism Story: Trust Your Government, or Be a Patriot and Get on Google

Posted March 7, 2008 01:33 PM (EST)

A big autism bomb went off yesterday, about how US medical personnel had determined that vaccines had aggravated a little girl's mitochondrial disorder, resulting in autism. Now, the American people are left to interpret what it all means.

Here is a handy guide. You can:

A) Blindly trust what government officials are saying (or not saying)

or

B) Invest 30 minutes in the future of your nation's young people (do it now, over a nice, warm latte!) and go Google for yourself.

OPTION A:

Yesterday, Dr Paul E. Jarris, Executive Director of the Association of State and Territorial Health Officials (ASTHO) sent an email to his colleague, Anna DeBlois, on how officials should respond to the glaring headlines emanating from Atlanta.

"You may have seen the recent media interest in a vaccine-autism lawsuit which was settled by the federal government," he wrote. Apparently, someone in the federal government had reached Dr. Jarris and told him to pass on the following (internal) explanation:

The case was settled because the vaccine worsened the child's underlying and previously undiagnosed disorder, causing impaired brain function. These symptoms of impaired brain function then led to an autism spectrum disorder. The federal government maintains that vaccines do not cause autism, and that this case does not indicate any change in their position on the issue.

TRANSLATION (An Anti-Syllogism): "Vaccines cause brain impairment, and brain impairments cause autism. Therefore vaccines do not cause autism."

Meanwhile yesterday, back in Washington, Bush administration officials would not comment on the case, saying they needed permission, "from the person who submitted the information" to the court.

TRANSLATION (Auto-Censorship): "We really, really want to explain WHY we folded like a tent without so much as a whisper of a defense, but that would require asking permission from our lawyer (the DOJ), which we are unwilling to do.

And most recently, CDC Director Julie Gerberding told the media that the American people need to "set aside this very isolated, unusual situation," even though "the court apparently made the decision that it is fair to say that vaccinations may have been one of the precipitators."

TRANSLATION: (Middlebrow Bureaucratese) "I am either an exceedingly ignorant, untruthful or misleading Director, because there is no evidence at all that this situation is 'isolated and unusual' (indeed, the evidence points to the opposite), and because the court 'decision' was not made by the court at all, but rather by medical doctors who work for the US Secretary of Health and Human Services," otherwise known as Dr. Gerberding's boss.

OPTION B)

Google "autism and mitochondria," (96,900 hits) and then Google "mercury and mitochondria," (169,000 hits) and draw your own, informed conclusions.

Now, enjoy your coffee (and your good citizenship).

PS: The next time someone tells you that this girl does not have autism, but only the "symptoms" of autism, you tell them that the definition of autism is having the symptoms of autism. Period. Hannah Poling has autism as defined by every medical book, on every shelf, in every library -- including at the colleges where all these government officials received their degrees.

No Hope!

That's what we were told by most of the medical establishment. The Web, on the other hand, was telling us that if we spent our money with X person or X treatment, our child would be spouting poetry within days of beginning treatment.

Ya gotta love snake oil salesmen. . .

Then you've got the groups and individuals who believe that uncontrollable bowels, fits of screaming, smacking your head against the wall for hours on end, biting yourself, biting someone else, or seizures are supposed to be acceptable? Maybe the message is a little
too obscure for me, but I'd like my son to be integrated into society.

It's okay, and encouraged to be different in our house, but when you can't function in this society, (is there another society out there?) then maybe we should be working on that integration thing.

I know my son is smart, he's got a really great sense of humor, and he's got an ear for music, (just watch him shush Mommy, who tries hard but doesn't carry a tune well). I believe that my son is an individual who is a person separate from his ASD. I'd like to meet that person.

We've spent Tens of Thousands of dollars on supplements, therapies, and treatments for our son. Some have worked for a while, some not so much, but we'll keep trying. I've seen my son's frustration when trying to communicate with us. I've seen him get embarrassed because
someone points out his liquid diet, or his nearly constant humming.

When I see children, (or sometimes adults) staring, I try to ask them if they have questions. Sometimes they do, and I answer them as best I can, in as few words as possible, (general lack of attention these days). Most of the time, they shake their heads and go back to whatever they were doing. Doesn't matter, they've still embarrassed my son. He sees and understands, but can't quite act/react to his environment.

The Treatment/Services Conundrum

"What can we do about this?"

Hmmm, just like everyone else, we hit the web. The wife throwing in hundreds, (I mean that literally) of hours researching what to do with a child with Autism. (They weren't calling it a spectrum disorder yet, but we'll get there.)

ABA? (applied behavior analysis) That sounds good, let's see if we can find someone in, (insert major city here) that can do that. Oops. The only center in town has a waiting list, and the at-home therapy people apparently think they poop gold, because they charge $50 to $150 per hour! Okay, we'll put that on the back burner for when we win the lottery.

CFGF? What the hell? Casein Free, Gluten Free diet. Seems that this 'genetic disorder' allows these kids to have massive problems with digestion, inflammed bowel, leaky gut, (what?) and a host of other digestive problems, including food allergies.

Seriously, after numerous treatments with antibiotics, the child's stomach and upper intestine walls have sores or lesions that allow hard-to-digest foods to pass directly into the blood stream. What's
hard to digest? Glad you asked! Casein, which is a protein found in Cow's Milk, and Gluten, a protein found in Wheat. Both of these proteins will pass into the blood stream and head directly for the brain. Once in the brain, they act as opiates, (like opium. . . yep, a potent narcotic pain killer/addictive drug.) Have you ever tried to find food that didn't have one or both of these? Double Shit! (Lot's of poop references in this post, which is appropriate, because from then on, we spent more time talking about poop than we did about work, TV shows, chores, bills, you name it! Poop, poop, poop!) This is the one thing we pursued first. My son was still young enough to be eating baby food, so switching to brands that he could eat should be relatively easy, (relative to finding other therapies, that is.) My wife took the withdrawals on the chin since I was in school for the morning screaming marathons. My son was too tired to keep going by the time I got home, but still wanted to go out to a park/playground. Yep, you heard right, my son went into withdrawals for about two weeks. Almost constant crying, diarrhea, (there's poop again), runny nose, shakes, then constipation, (no poop!) all symptoms of withdrawal. After two weeks he showed some real progress on his cognition, but unless you're with him all the time, (or have gone through it) it's tough to explain this. Each gain is like a VERY slight difference in a shade of grey. We see it, but others might not even notice.

Speech Therapy? Apply for med-waiver. Here's the form. Be prepared to wait until hell freezes over to get a response.

Occupational Therapy? Apply for med-waiver. Here's the form. Be prepared to wait until hell freezes over to get a response.

Physical Therapy? Apply for med-waiver. Here's the form. Be prepared to wait until hell freezes over to get a response.

Respite? Don't make me spew soda out my nose! Oh, that was a good one! Stop! You're too funny! Didn't anyone tell you there's a 'Genetic Epidemic' going on? Where are we supposed to get trained people for all of this? Go on, really. . . no really, go away.

Your son needs supplements! Buy this supplement, no wait, that one has the wrong kind of vitamin C, buy this one, no wait, this one has lead from China! Keep buying! We know you've got money somewhere.

Will insurance pay for any of this? (Wait a few minutes for the insurance rep to stop laughing, then give him/her a raspberry, or something more inventive, and hang up.)

Insult to Injury

So, we'd moved, put our house on the market, I'd started school, we were learning about a new area of the country, trying to find a daycare so that the wife could work while I went to school, and now, we had to learn about autism.

The first thing we found out is that no daycare will accept children with autism. Oops.

Um, we've already taken out loans for my schooling, and we're past the refund period, school is during the day, and now my wife can't get a day job to pay for our living expenses because our son can't be in a daycare program? How's that supposed to work?

Let's heap a little more on to that! Our son no longer responds to his name, doesn't want to wear clothing, thinks feces is the greatest paint on earth, will sit and watch water pour from a garden hose for hours on end, likes to sit in the middle of the parking lot and drop rocks down the drain grate, won't eat table food, and will 'melt down' if we try to get him to do anything he doesn't want to do.

Hmm, let's also add a little dash of constant stares because our son still drinks from a bottle at age 3, slap in a little embarrassment in because he can't stand solid foods, (he will throw up at the drop of a hat) and so he only eats baby food.

Mix in a little of the snide comments from people standing in line behind us at the grocery store who have no fucking idea what it's like not to sleep for days on end while he escapes from his crib and moans or comes to us silently demanding a bottle refill by pressing the empty into our sleeping faces.

Dumps every building block he owns out on the floor, tears every piece of tissue from the box to leave them covering the blocks. Try walking on that in the dark and not making a sound because his hyper-sensitive hearing would wake him up.

Oh yeah, I also love it when he climbs into a laundry basket with his blanket and just sits. Too tired to do anything, including walk, for hours during the day, but then can disappear at any moment unless we keep the door barricaded.

Did I mention how much I hate cleaning feces from walls, cribs, mattresses, sheets, children's hair, fingernails, and carpets?

Oh yeah, then have the facilities people at our apartment complex bring in a service to spray pesticide around the entrances to our apartments, bury more in the area where my wife is trying to plant flowers, while my son plays endlessly with the water hose in the dirt, so that they can start allowing large dogs on the property. Can't have empty apartments because they're too expensive now can we? We got our first seizure from that one. . .

Then, my wife and I get called hysterical and that we are desperate to find someone or something to blame for our son's autism. Are you kidding me?!

A River in Egypt - Denial

Let's see, how many ways can you think of to come up with excuses as to why your son doesn't talk, won't make eye contact, and spends hours, (like 3 hours or more at a time) rolling a ball down a tilted box?

My wife started to worry about him way before I did. She's smart, even if she does bite every now and again. . .

We got the usual comments,

"Einstein didn't talk until he was [insert some absurd number here]!"

"Children who are really smart develop slower."

"Don't worry, all kids are different!"

"He's such a quiet child."

Both of us were new at parenting, but being a new parent had a side effect. I couldn't answer a simple question: "Is this normal compared to other children?"

I don't mean the stimming, I knew that wasn't right, but again, I was desperately paddling upstream on that river in Egypt, but the speech and lack of interaction with anyone was starting to penetrate the foot-thick armor surrounding my senses.

I kinda remembered what I was like growing up, and being the oldest, I remember a little of what younger siblings were like, but not clear memories. More like the flashes you get when visiting an elementary school after not being in one for years.

Looking back, I can see that his behavior wasn't normal, and the warning signs were all there, but hindsight is always 20/20.

We were also right in the middle of a major change in our lives, moving a thousand miles for a change in my career. While not an excuse, (nothing is) I know it was a distraction for both of us.