The other night I read an article published in Scientific American that exposed just how far up an arse a normally bright person’s head can penetrate. You are probably reeling from the fact that I just reported being able to comprehend an article written by Scientific American. I am too!
Here’s the skinny: this country’s leading (female!) brain in the field of stem cell research and therapy is being “criticized” for running a clinical trial to explore stem cells from umbilical cord blood as a treatment for autism.
R E A L L Y ? C R I T I C I Z I N G P R O G R E S S ? W H O D O E S T H A T?
Just to let you know, my husband and I are joining the National Guard in hopes of being assigned to keep anyone or anything from disturbing Dr. Kurtzburg’s work. Why? Let’s say for the heck of it that that Dr. K really isn’t all she’s cracked up to be and that she wears those goofy glasses to fend off Duke’s hot male doctors. The woman is proposing a life-as-we-know-it altering change in the direction of this country. We can’t not entertain it.
Autism, in my opinion, is going to bring this country to its knees. Forget the financial crush. When 1 in 58 can’t toilet without help, from where will we pool our next set of leaders? Where would this country be without risk takers Cornelius Vanderbilt, J.D.Rockefeller, and Andrew Carnegie who nearly (and happily) bludgeoned one another to revolutionize, reinvent, and re-revolutionize? I am not at all suggesting that individuals on the spectrum cannot be classified as genius or can’t live amazing, productive lives with great contribution. I am simply reminding you that in the very near future, the number of individuals that will have to be taken care of, compared to the ones with the capacity to lead, is going to be S T A G G E R I N G. We need to cultivate our big thinkers of today in order to secure more for tomorrow. I ask, faced with today’s autism crisis, WWJDD? Yes, I mean Rockefeller.
“Premature” and “too soon” is how Dr. K’s trial is being described. Ok, then when? When is someone going to propose an acceptable lifeline for families faced with autism? And what about the “greater” good? Is it the cost? I am not math whiz, but the $15 million price tag on the clinical trial is a drop in the bucket to spend on America’s future. If it costs up to $2.4 million to raise one child with autism to adulthood, how can “rolling the dice” with $15 million not be seen as a wise investment? A shot in the dark to possibly eradicate an epidemic? I’m in. For goodness sake, if only six of the 390 children and adults enrolled in the study improve, we’ll see dividends. Cornelius Vanderbilt didn’t go from ferryboat captain to railroad magnate to builder of Grand Central Station by sitting on his butt (or wallet). Meanwhile, John D. Rockefeller founded Standard Oil because he never stopped trying to figure out how to best Vanderbilt. And just who makes steel better? Andrew Carnegie, that’s who. Will men or women like you emerge again? Ghosts of the Industrial Revolution, please hear my prayer! Lend us some of your inspiration and perspiration! (Oh yeah, and the multi-billion dollar value of your once million dollar fortunes would help too. Thanks.)
Rant over. My money’s on the girl.
My husband and I traveled to Costa Rica in 2009 to seek embryonic stem cell therapy for our then five-year-old son, J.R. We knew then that we did not know what we were getting ourselves into. I simply decided we wouldn’t risk waking up when our son was ten (whoa, where has the time gone?) to learn that stem cells would be the wave of the future. Maybe I have a little bit of Henry Ford in me?
Just like the rest of The Vannattas’ adventures in autism, Costa Rica proved a wild ride. Upon our return, I wrote the piece you see below. I hope it shows that I am almost never as serious as I appear in today’s blog entry. My ultimate wish is that 1 in 58, and those who care for them, find daily joy. Putting my own son’s history to paper certainly does it for me.
P.S. If you have not watched The Men Who Built America, you are truly missing out. I’m thinking that John D. Rockefeller most definitely displayed a few obsessive tendencies. Just sayin’.
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Saturday, April 25, 2009
The Placebo Defect
This just in: stem cell treatment WORKS (to drive a parent batty).
My husband I and had promised each other weeks before our trip that we wouldn’t allow the placebo effect to set in once J.R. had received the stem cell treatment. If I had any delusions I could actually walk around without electron microscope strength glasses observing J.R.’s every last move, they were quickly tossed aside after J.R. yelled out “mommy, my boobies are getting wet in the pool” the night of his last treatment. Had J.R. noticed his boobies before? Did I really just write that last sentence?
Because I knew there was no possible way I wasn’t about to NOT park myself, pad and pen straight up J.R.’s rear, I tried my best to control the less psychotic influences in his life. I was not about to inform his teacher and therapists that we were seeking stem cell treatment; they were bound to see something in J.R. that was not really there if J.R. performed a classroom miracle (i.e., taking more than one obligatory bite of his lunch). To distract these professionals from noticing their tiny prodigy would be absent for three weeks, I told them we would be taking a dream vacation and bringing J.R. with us. Ok let’s face it, I’d be dreaming if I thought I would actually get any vacation for the next ten years, so I hadn’t stretched the truth all that much.
Now back on American soil the placebo effect is, to quote 80’s rap, in “full effect.” To add to the fun, my husband and I have developed a “look” that we exchange every time we observe J.R. doing something “out of the ordinary.” Okay who am I kidding, the kid farts and the looks fly, which translate into “STOP THINKING WHAT I THINK YOU’RE THINKING WHICH ONLY STARTS ME THINKING…WAS IT THE STEM CELLS…? PARKAY? I CAN’T BELIEVE IT’S NOT BUTTER!”
My point is that the placebo effect is impossible to control. Can we attribute any of J.R.’s following behaviors to the stem cell treatment? Who the heck knows. What I do know is what I’ve thought all along- J.R. has been involved in so many interventions, so we may never figure out if there’s that one magic bullet (or if it will ever hit him). We know we are just infinitely lucky we have the opportunity to try such treatments.
Ok here it goes- The Top 10 Things J.R. Has Done to Prompt The “Look”
10. He uses the word “another,” as in “Jack, find another car to play with.” Then again, he’s named his favorite Lightning McQueen car ‘Nother Car.
9. He learned how to ride a Razor scooter in 3 minutes flat. He’s got 6 gashes to prove it and tolerated a Band Aid (which we thought would stop the hemorrhaging) for a full 12 seconds (a new record).
8. He uses all the nicknames for his little brother that we use, understanding that they all mean “Jack.” “Tons of Fun” is not one of them, so we think that J.R. may be developing his sensitivity chip.
7. He says “cheese” and smiles for the camera. Need I remind you I recently paid a small fortune for a professional photographer to capture one of FIVE photos I own of J.R. making genuine eye contact. I can hear him half way down the block, on his Razor, calling out “cheese.” I hope he will soon figure out he has to remain in FRONT of the camera for the photo op to become an op.
6. He asks where his brother has gone, to mean “mom, you may want to start parenting.” Inevitably my two year old will wander off into the neighbor’s landscaping the minute I turn away; J.R. answers himself with a stock “into Bob’s bush,” but hey at least the kid finally acknowledges his brother’s existence!
5. He climbed to the VERY TOP of the Burger King habitrail-esque playground structure. He has never done this. Jack followed him right up, instantly loaded his pants, and clogged the line causing me to have to weave MY sweaty self all the way to the top and rescue J.R. from certain death by noxious fumes. You should have heard the parents applaud.
4. He calms himself. We’ve longed for J.R. to develop coping mechanisms- his anxiety can be through the roof. Now he says things like “it’s okay, it’s all better, it’s gone, etc.”
3. As we speak J.R. is battling a temperature, and today he told us that he wanted to feel better. WOW!
2. He exceeded a professional’s expectations. Last week his ABA therapy supervisor observed him actually reading (vs. recalling from his freakish rote memory) 4th and 5th grade level words. My husband watched her jaw drop via closed circuit TV. Priceless. Actually, pricey but who’s counting?
1. He told us what he did at school. Last Friday J.R. came home (in his $40 shirt) covered with silver paint. We are trying not to speak for J.R. or prompt his answers, so instead of saying “did you paint today?” my husband said “what did you do today?” J.R. quickly responded with “I painted an octopus at school today daddy.” Imagine my surprise when on Monday he came home with a silver octopus (which I am getting silver plated).