On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Tuesday, February 22, 2011

Politics and Mental Health Part I.

I've deliberated for a week about posting this because I only have words to substantiate my claim and no legitimate proof. Ever the science teacher, I don't like to shoot of facts unless I can back up what I say. I have been cornered in life with no fighting words to defend me once to many so I've learned never to run my mouth unless I can document, document, document what I say. For this reason alone, my spouse rarely hears me say "I was wrong" because I don't say stuff unless I know I'm right. On the occasion that I may have erroneous information, I always preface my opening statements with "I'm not sure but..." I might feel bad for my hubby that I'm always right if I wasn't always right with a respectable margin of error of only +/- 1%.

That said, and with an insane morning of crashing and burning of services and support for Sissy because of a psych eval faxed to Sissy's therapists yesterday in which PDD-NOS is Axis I, I can't hold my tongue anymore. I'll elaborate further on our current woeful state of ZERO support effective immediately when the shitstorm settles and I can survey the carnage and determine if there is anything of value left on the ground.

For now, I want to talk about politics and mental health but because I can not substantiate what I know to be truth with links, a bibliographical index, foot notes and citations, I will speak in rhetorical generalizations. The information I'm about to share I've gleaned over the past several years by attending local and state mental health parent support groups and forums, by being a board member of a local support group for SpEd families, by listening to the stories of persons that work in medicine in any capacity, by being an advocate for parents of challenged kids which includes the occasional long email, cup of coffee or late night phone call in which people tell their sordid tales, by asking provocative questions of the-powers-that-be in a demure way that garners me the answers I'm looking for (anyone like a good fishing expedition?) and by keeping one ear tuned in to the politics of government that never make headline news, that would be, the REAL state of politics.

Regardless, dear readers, you'll still get the point: politics plays an enormous role in mental health and the subsequent availability of services for families and consequently, the overall quality of life for persons living with these diagnoses and their families or caregivers. It behooves us to advocate for our children and ourselves by keeping our foot in the door of local, state and federal politics. But fear not, I'm not a conspiracy theorist, just a keen observer with a photographic memory and astute listening skills. Anyone will tell you anything or show you anything, if you're willing to wait long enough for them to feel safe to tell their tales.

I'll start with a rhetorical conversation I had several months ago with an "imaginary" NICU nurse that resigned from her profession for what she deemed as ethical concerns. Imagine with me that this nurse was employed by a state hospital that served the local community's indigent patients. Here's how this scene could have unfolded:

The nurse told story after story of strung-out women delivering infants that had been pickled in whatever chemicals their birthmothers ingested during pregnancy. Most of the mothers would just show up on the hospital doorsteps in labor and then leave after recovery, signing away rights to their infants. Social services would always be involved of course and the NICU and maternity ward nurses kept numbers and contacts of adoption agencies, private homes waiting for placements and doctors that could get these babies into homes, bypassing the system altogether. She had just as many tales of teen moms on medicaid, taking their babies home or women being given "one more chance" by social services to prove their abilities as mothers and therefore their right to raise their children.

In all of these stories there was one common thread, medicaid. I listened intently and then her story stopped abruptly. She bit her lip and said in a hushed tone, "I really can't tell you the rest but I feel like I can trust you." She went on to explain that she had resigned from her position because of what she was asked to do to the medicaid babies. A state mandate, medicaid infants were given a different form of the standard vaccinations and in some cases were given extra, experimental vaccinations. She went on to say that the mothers would have papers passed under their noses to sign, documents indicating that they were giving the hospital the right to administer the vaccinations and that the risks were explained. However, these papers were usually passed and signed after vaccination or when the mothers were occupied and didn't have the time to truly review the documents accurately.

She concluded by saying that this procedure had been occurring for many years and that when she went snooping through files, discovered that the introduction of the vaccination practices directly coincided with the increase in autism and other mental health diagnoses in children. She asked one too many questions of the charge nurses, was told that no harm or danger would befall the infants and then was asked to either resign or be fired.

She looked at me to gauge me for my response. She had known before she told me the story that all three of my children were born as medicaid babies to a medicaid mother who was not mentally well enough to make informed decisions about the best possible care for her infants. I nodded my head. Two children received their vaccinations in the hospital before being released. Those same two have profound mental health and developmental delays. WG does not. I was there for WG's delivery. I took WG home, assuring the nurses at discharge that I would follow up with the pediatrician at home to make sure she got all of her vaccinations. WG is neurotypical.

If I extrapolate this nurse's account correctly, this vaccination process goes beyond the thimerosal claims people have made over the years, supposing that it is what has caused the rise in autism. The CDC staunchly rebuffs the thimerosal accusations and furthermore, it holds no water as that chemical has long since been removed from inoculations. As I understand it, this was an experimental vaccination process for our state alone, specifically targeting medicaid infants because "they are the easiest to track into adulthood." In other words, the statistics of the progression of those infant's mental health and development can be linked directly to the induction of the vaccination experiments. They are, as it is called in FISH testing for genetics, "flagged".

But of course, all of this is rhetorical generalizations. It could be any NICU nurse, in any state talking about any infants getting any vaccinations and getting any kind of gag-order or forced resignation. This could just be my attempt at writing a sci-fi novel. Maybe I lied and I'm a conspiracy theorist after all. Maybe it was late and I don't remember all the facts correctly, I did say I have a margin of error of +/-1%...

I'll let you sit on this for a day. If you liked part I, you'll LOVE part II.


Kerrie said...

Wow. Crazy wow.

sweethoneydoo said...

do u realize how many stinkin diagnosis i've had and i will be 28 tmw? the whole mental health system in this country is screwed up. hell, i'm on limited medical coverage through work and can't get my mental condition covered so i have to go through a regular doctor. grrr.

cross ur fingers that i get my care package mailed to you on friday, about a month after i packaged it all up. sorry!

Lisa said...

Ahhhh - at the risk of sounding a little bit off myself, I have to tell you that this doesn't sound too far-fetched to me. I am eagerly awaiting Part 2.

Tara - SanitySrchr said...

I watched Dr. Oz one day this week and autism directly correlating to vaccinations was the topic. I missed the first bit of it, and of course had to leave, so I didn't have to get watch the entire show. I know in what little I was able to see that it was a hotbed of debate. I look forward to Part II.

Gallivant Family said...

I feel sick to my stomach, because I believe every word. How terribly sad. All this talk about helping kids in the system and reform, and none of it matters because they are poisoning the children at birth. Ugh.

cinch said...

Don't have to convince me of anything...I believe it.

Dimmie said...

Hi, I'm a new follower, but this I had to reply to.

The study that showed vaccinations correlated with Autism was recently shouted down, shown to be untrue and the person that wrote it has been shamed. This was something you SHOULD have done more research on (proper research, not reading anti-vacc websites) before posting about, I think, though the story was worth posting alone.

Apparently I can't copy paste things into this box, so I can't post the links I want to, but the author of the paper was found to have manipulated evidence, broken ethical codes and is now no longer able to practice as a doctor; The paper was found to be false.

Unfortunately his untrue claims have seeded a "movement" of people who do a surface skim of research and read his paper, and then proceed to shout their untruths far and wide.

If you actually do real, indepth research (and that means reading medical papers) you'll realise most of the "facts" the anti-vacc movement is shouting about are actually untrue or exaggerated. The claim of mercury in vaccines is one of these. If mercury is included in a vaccine it is in amounts that are so small mercury is actually found higher in some food, for instance.

It is all bullshit, basically. ;) I know it must hit close to home, but don't let that cloud your sense or allow you to become taken up with untruths.

Integrity Singer said...

@ dimmie - i'm actually quite familiar with that story if you are referring to the UK doctor several years back. The account this NICU nurse told me was about an entirely different experimental vaccination process. I'm not part of the anti vaccine movement, never have been. I don't advocate along side the other autistic parents that scream to stop vaccinations. As I said here in this post, the CDC has proved that thimerosal has no link to autism disorders and it's moot because it hasn't been used in vaccinations for some time.

Dimmie said...

Yeah, okay then :) It was in the news quite recently as well, perhaps he was charged or some such in January, I think? I can't remember off the top of my head.

The anti-vaccination movement bothers me a lot for a variety of reasons. A dear friend of mine nearly lost her baby because a friend's (anti-vacc friend) unvaccinated child came down with pertussis and passed it on. It all could have been prevented, you know? Horrible situation for all.

Anyway, on a different note, I have really enjoyed reading your blog :) Someone recommended it to me and I spent two days going back and reading past entries. I have a great respect for you and all you do for your children.

Lisa said...

No, I believe it is much more than thermosal. That was just the ingredient that received all the attention - convenient because it was removed and autism cases still abound. It's not about just one ingredient - never was. It is no coincidence that the more vaccines that are "required", the more mental health issues we see in this world. Is it a coincidence that low-income families (even intact, GOOD families that receive Medicaid because of poor job/no insurance situations) have more and more kids that are dx'd with multiple mental illnesses/autism/delays? Does someone want to debate that it's just the gene pool? Maybe it's a generational thing - babies who were given these strange cocktails at birth are now having babies with all of these issues - think on that!

kisekileia said...

I don't think we can really correlate vaccination practices in one state to an increase in autism, for several reasons.

1) The increase in autism diagnoses has occurred primarily because of dramatically increased awareness of the milder forms of autism. There has been a similar dramatic increase in awareness of many other mental health and developmental issues, which explains the increase in diagnoses.

2) No credible study has found any links between vaccinations of any kind and autism. It could theoretically be different for experimental vaccines that have not been widely tested, but I see no reason for that to be the case.

3) There is no evidence that autism is more common among kids of low socioeconomic status, who would be the ones receiving these experimental vaccines.

4) I know of no evidence that autism has increased more in some areas than in others--other than the Silicon Valley area, which is explained by the high concentration of people with Asperger's in the computer industry passing on autistic traits to their babies.

Heather said...

Interesting... there have been studies in the metro area where I live showing that there has been a huge increase in the percentage autistic children in the Somali immigrant population, significantly more than the general population. It isn't much of a leap to consider many of these children may have been receiving medicaid, and that their mothers may have not had sufficient proficiency in English to know what they were signing.

Integrity Singer said...

@kisekileia - LOL at #4. That's funny.

i agree with everything you've said, actually. I'm mostly playing devil's advocate with this post, blowing off steam, etc. because at some point in this nonsense with my daughter I have to blame something or someone or I'll go batty. But mostly it's just major life suckage with no cause other than life suckage. well, you'll see that it's all a ruse in tomorrow's post. it's going to be funny.

still think you're awesome, btw.

kisekileia said...

Thanks! I just read the new post and it's absolutely maddening. It's not just kids like Sissy who need institutions. What about, say, severely anorexic under-13s who need refeeding and long-term supervision to make sure they eat? It's nuts to insist that EVERY kid can be kept out of an institution without being a danger to him/herself or others.

meryl said...

I found this article and immediately thought of your blog entry, seems to support your evidence pretty well...