April 25, 2011

Walking the Plank


Autism Awareness

I love Pirate speak; it just makes everything sound so amusing. For example, the boy says, "shiver me timbers the camera broken". He is 3/4 German, 1/4 Pirate.  The fact that he holds in his little paws the actual broken camera seems of no importance, because the way he said it was so delightful. I am hoping for the same outcome with this post.

Here's my hand-give it a good slap. I have to....{inhale} post a....retraction {exhale}. I am writing this post in my coat closet {it's so dark}, the shame. No really, I mislead the masses and I’m owning up to it, because that's how I roll. Key to heaven’s gate you ask? In my back pocket.In order to refresh your memory I wrote a vaccination post {stop groaning} a few posts back. Click here to read, or pull out your three ring binder of my printed posts you keep on your coffee table. For the record I did edit the post ASAP, so it is not in its original state.

I may have made, or did, make reference to the Wakefield fiasco, to summarize {what I said} that Dr. Andrew Wakefield lied about the MMR vaccine causing Autism, may have called him a name too.  My new friend Caffeinated Autism Mom so politely cleared me up on the subject. Okay she totally called me out! But she was really nice. Love that! A caffeinated Mom after my own heart. I also encourage you to read our 9 page comment convo for more clarification. I don't see this as a completely humiliating experience as much as a success. If you haven't noticed I have no problem making jokes at my own expense, so this really doesn't put much of a dent in my ego. This is a little victory for my blog, and a growing experience for me {two for one}. I want my readers to feel safe comfortable disagreeing with my views/opinions {be nice though, okay}. That fosters open discussion and learning. I love to discuss, I'm really good at it.


{Let me deviate with a yet another painful over usage of a bracket here and just say friends if your email isn’t linked to your comment, I can’t harass you, I mean discuss, or you could just subscribe to the comment portion too.}

On to my retraction action.  {Conjunction junction what is your function? couldn't resist}


One of my greatest blogging fears on the topic of Autism is that I will garble up some scientific fact. Fear realized. I certainly try very hard to make a concerted effort in this area. For as hard as the Autism community has fought in the last 50+ years to blow the old stigmas and science out of the water, little ol' me doesn't want to throw it all back in the refrigerator. {Get what I'm saying there?} 

"The term refrigerator mother was coined around 1950 as a label for mothers of children diagnosed with autism or schizophrenia. These mothers were often blamed for their children's atypical behavior, which included rigid rituals, speech difficulty, and self-isolation. Today the prevailing consensus among researchers is that parenting has no effect on whether a child develops autism or not."  Courtesy of Wikipedia, Click for more mind expansion on that ridiculous topic.  Might I also add those kids were locked up in institutions for the rest of their lives, grrrr.


I have spent hours researching the Internet and library, buying up every Autism book available, sans one, {quick plug for Big Daddy Autism, I will buy it...soon, promise} and picking the brains of the boy's therapists and doctors. After all million hours of said research, I still feel I've only scratched the surface. To regurgitate even a fraction requires plagiarism and months of memorization and dictionaries. I wish I could script, just a teensy bit.


I must admit when it comes to my vaccination research, I have studied ingredients, cause, effect, and most importantly how they affect{ed} my son. I knew of Dr. Wakefield, but have not fully researched {til now} his role in the vaccines vs. Autism debate. Dr. Wakefield has dedicated most of his career to find a possible link between MMR and Autism, or vaccines and the gastrointestinal connection  in general.  It has been a rough road for Dr. W. He feels more research needs to be conducted in this area.  There are enough allegations swirling from both sides to create a good size media twister.  I am not going to provide a specific link for info on Dr. W., again, the  ball is in your court here because as I mentioned, hot topic. I do not want to promote research in an incorrect light.  My stance on vaccines still remains the same.  I do not think vaccines alone cause Autism, but they are dangerous and cause harm.  At least in my son's case, there were already problems brewing before I allowed the Ped to jab him with all that junk.  The aftermath of the shot can be regression for some kiddos.  Get them, don't get them, it's your choice, they provide protection for the masses, but for my son it impairs his speech, fogs up his beautiful mind, and enables rigidity.

The fact of the matter is I don't know exactly where I stand on the issue of Dr. Wakefield besides the fact that I commend his dedication to his work in the field.  BUT I don't want my ignorance to sway any parent making the decision to vaccinate or not to vaccinate.  I allowed the media's biased opinion to cloud my own, and then passed that along. Sorry. I wasn’t acting responsibly. Clearly had too much to drink or was suffering from some sort of strep throat, pink eye, croup like illness and on my death bed, oh could have been this thing called "fatigue" I hear about now and again. To be quite honest, I took it face value, and didn’t do my homework.


While we are waging this war against Autism, the causes, the therapies, the recoveries, whatever, every 20 minutes a new set of  parents are told their child has Autism and are met with the challenge of making life altering decisions for that child. If those parents {or me} don’t do our homework and become informed in all areas, agree or disagree, chances are we will not be able to make the best decision for our child.

Scene:  Parents squirming in cold dreary conference room sitting across from a Child Psychologist, Speech Pathologist, and Developmental Pediatrician. Said team pushes Kleenex box from center of table towards parents and says, “your child is on the Autism Spectrum, there is no cure, there is no hope, his will be like this for the rest of his life, he needs 40 hours of therapy a week stat, hopefully he'll be able to talk someday, don't listen to Jenny McCarthy diet doesn't make a difference, keep plugging shots in his arm, sorry, good luck to ya.” Been there, that’s how it goes, or how it went for me. They were wrong by the way, yes my son still has Autism, might not be a cure, but there is hope, he will get better as he gets older, yeah 40s about spot on, he talks a lot, albeit very loudly, I believe in recovery and biomedical treatment, and he’s a flippin’ rock star.

I will add that I heart Caffeinated Autism Mom.  I've asked her to guest post because she uses big words, and is really smart.  I also happen to admire her approach, knowledge and objectivity.  Thanks Angela!

Any thoughts? Dig in people.  CA Mamma can vouch, I don't bite. {much}

Cari

7 comments:

  1. Cari, I *heart* you, too! Your post is amazing, and I LOVE your sense of humor! I have to admit, when I visited your blog for the first time and stumbled upon the vaccine post, I hesistated in making a comment. I am a teeny bit gun shy. I've seen how nasty comments can get (and quickly, too!), especially on the hot topic of vaccines. I knew I could be asking for trouble, but I really wanted to make sure that you at least had the information and not the media hype. So, I'm really glad I took a moment to craft a response to your post that day. You have been nothing but gracious to me, and then to see such an amazing post about the whole thing today is absolutely remarkable. Thanks for allowing yourself to be open and for continuing to seek the truth for your child's benefit. I think most of us autism mommy's need an honorary PhD with all the research we do! Don't you agree? There's enough of us out there now, we could start our own college!!! Thanks again, Cari. You rock.

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  2. Angela- Thanks for being so kind, and for your comment. I'm a big proponent of accountability. The truth will set you free. In my view, discussion fosters growth and change. If people and researchers had not spoken up, or disagreed with the thoughts of Autism circa 1950s, where would our boys be now? Ofcourse I have a feeling you and I would be on the war path for change there. I can be passionate about Autism and still be respectful of other points of view. That's what makes this world such a great place. That's why there can be 100,000 Autism blogs or single parent blogs and all the stories are different because they come from a different point of view. College? Yes. I will step up to the plate and teach "stick it insurance 101". Well now I'm not being very respectful am I?

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