Walking through Costco yesterday, I felt the presence of a man standing next to me. At least I assumed a man, because of his height. I couldn’t see his face. There was another older man ahead of me down the aisle who looked back and called to the presence next to me, “Come on, Joey.” I resumed my focus on the bottom Costco shelf and thought nothing of it until Joey crossed in front of me. I was still looking down and only his calves were visible to me. Skinny, I thought, the kind of skinny that anyone in the know about autism immediately recognizes. The exchange between the two that was not out of place a moment before turned on a dime into strike two. Not wanting to be right, I watched. He was between 16-18 years old and he trailed behind his father staring at the shelf signs, and occasionally the merchandise, flipping at both with his finger, clearly stimming. I’ve seen it enough to recognize it. I could feel the tears but held them back. I looked at my mom and discreetly pointed to Joey who was a bit ahead of us now, walking away. Mom noticed it first – that distinct Mitochondrial Dysfunction walk. We know that walk very well. Strike three. We exchanged a glance and wordlessly moved on, each of us knowing the raging struggle within to control our emotions.
We saw Joey and his father a few more times through the store. The boy always trailing, the father calling for him, the boy responding, although distinctly, engrossed in his own world and disconnected from his surroundings. Maybe, when it’s quiet and with not so much confusion around him, he’s much better, I thought.
When I saw Joey again and looked at my daughter I have to admit I thought, “Oh shit, oh shit, oh shit…that’s her in a few, short years!” I found it hard to breathe and my heart exploded in familiar pain just as it has for 11 years – for Joey, for his family, and for my family.
On this particular trip to Costco, I had all four of my children with me and for the first time in a long, long time my severely vaccine injured daughter was walking with us and not in her customary wheel chair. She slowly walks, the Mitochondrial Dysfunction walk, locking her sacrum and her knees with each step. Every now and then she has to break away from the circle of her family to do her happy dance. You may know the one I mean. Damage control in a crowded store is not fun.
After returning home, it took me all day to come to another conclusion; she is not as severe as he is. In Costco, she didn’t stray, lost in her own world. Although non-verbal, she held our hands and she leaned into us for hugs, happy for them. As we passed one particular aisle she turned back toward it and my mother looked at me quizzically. As I held my nonverbal child’s hand I said to my mother: “She wants to go down the indigestible corn filled, GMO ravaged, wheat laden chip aisle and she knows she can’t eat any of it, right Bean?” My sweet girl smiled and NODDED. We all laughed. She understood me in the middle of chaotic Costco and what’s more, she responded. She also reached for her brother’s hand because she wanted to. She swung his hand high and he, aware of her game, said, “Weeeeeee!” She giggled and they played it again and again.
My thoughts returned to Joey. I can’t help but juxtapose the two children. I’m positive Joey and his parents fought like hell just to get him where he is. And yet from what I saw, as limited as my daughter is, he is not as recovered as she. Undeniably, our fight for her has yielded some good results that I could not claim even a year ago.
It’s 24 hours later, and I am still thinking of Joey. I’m angry. I’m sorry Joey. I’m deeply and unsettlingly sorry that I needed a measuring stick yesterday. I’m sorry, Joey, that you were it. The idea that you and my daughter suffer so Mr. and Mrs. Disbelief can learn rather makes me a little livid. And don’t fluff me with transcendental euphemism. Tell it to The Almighty. I neither want to be the person who needs a life lesson (for the record, I hate that expression); nor do I want my life, and my child to be an example for others. I’m not your litmus test for your life’s blessings. I’m not your steppingstone to heaven. I’m not a model of motherly love to which you may aspire. I’m not your superhero. While I understand my attitude is not the correct one, it will take me some time (maybe years) to unknot the truth of my emotions and truly be at peace with this particular dark corner.
As David Lightman says in the movie War Games, “Come on. Learn goddammit.” The character Joshua (a computer) learns that war games are a mutual assurance of destruction. Now look at us. We’ve launched a war on our bodies and consequently that of our children: the medicines, the vaccines, the frankenfood, the chem trails. War games. Toxic assault. Mutual assurance of destruction. “WINNER: NONE”
So I say to you superheroes, humanitarians, pro-lifers, anti-death penalty people, animal lovers, good people who proclaim to be God’s children of any, all, or no religion, food eaters, air-breathers et al you must broaden your view of who needs saving. You have nothing to lose by suspending your disbelief, listening to us, and learning for yourself before tragedy strikes. You have everything to lose by dismissing us. One child lost to vaccine injury is too many. It diminishes all of us. Demand answers that maximize positive outcomes, not acceptable loss. Join us. Save the baby humans.
~Iron Muffin
*Artwork appears courtesy of Studio A and A
For Karin:
http://www.jstor.org/discover/10.2307/3579339?uid=3739656&uid=2129&uid=2&uid=70&uid=4&uid=3739256&sid=21102164189493
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1060102/
http://nuclear-news.net/2012/09/21/europes-increase-in-downs-syndrome-births-due-to-chernobyl-radiation/
Karin, you are missing the point. Yes DS is genetic, but those duplications of that 21st set of chromosomes increase in areas of increased radiation. Think Chernobyl and Fukushima. Yes I believe that DS has always been around to some extent, but an external environmental component can increase the occurences.
I love this and I love your name!
Thank you!!! 🙂
Thank you for the “litmus test, lessons, path to heaven” comment. I am also tired of the God gives special kids to special people line. After being in the Down Syndrome world and then in the Autism world, I’ve heard these phrases more times than I can count. It is insulting to both children and parents. They have a right to a healthy life, and dammit, they are not angels sent here to teach us something. They are here to have their own lives, friends, careers, etc. If we urn them into some kind of angelic messengers, then we are assuming they were born this way and are not supposed to be changed or treated. Yes we need to accept our kids where they’re at and for who they are, but for crying out loud! This allows injustice to continue.
And just for the record, Down Syndrome occurs in higher rates in areas where there is excessive radiation. Even though I adore some of the aspects of DS, there is a lot of negative biochemistry with it, very comparable to the biochem of autism. So yes, it has been around for a lot longer than autism, but it is still largely a manmade situation. The good thing is, kids with just DS can accomplish a lot more nowadays given the right supports. But mine has both, and we are still figuring out what works for our kids. Sigh! At least she is now affectionate and happier. Much better than before. I love her dearly!
Thanks for reading my entry Julie and I do agree it’s insulting although I’m (mostly) positive it’s not meant to be. Try as I might, some days it still hits me wrong and I am angry which always comes out in writing, never to the person’s face. Honored to be in the trenches along side you. xo
I have, on more then one occasion, posted on FB to try and educate the world that autism is not (and I repeat) IS NOT something that you are born with and does not give you super powers. It does not give our kids the ability to look at the world differently and see “a beauty that is lost on the rest of society”. It may give some the ability to take a picture in their brain from a helicopter and then map out the scene exactly on a piece of paper. And though their “ability” may amaze some and bring the “artist” large amounts of cash for their work, the money only goes to pay for their care – all of which is necessary to keep them from being institutionalized. Not my idea of an abundant life. My daughter’s autism was very “high functioning” and extremely hard to live with. I say “was” because she is fully recovered and I praise God every day for it. But I do remember using the yard stick and measuring her against other kids (typical and dis-functional) and feeling guilty, and grateful…. and oh hell the whole gammitt of emotions that went along with it. Autism is a prison. Period. And I did all I could and could not do to get her out. We have to keep going for our kids. We can’t give up and listen to all the non-experts or our kids will be lost forever. Thank you for your post! I applaud you for speaking up and making it real. Vaccines can damage! And it’s not ok.
Praising God that your daughter is recovered Candi! I applaud YOU for getting your daughter there and for coming back to support the rest of us. It means a tremendous amount. I will never give up! We soldier on. <3
I can’t tell you the number of times I have been out and about and see a parent with a child like Joey. Happened again this weekend. Makes me flashback to a time when my son could not even muster the strength/energy to ride a bike but now he speeds along just fine. When we are out and about, and my son usually does great in stores but I have run into perceptive parents who I know, know my son has autism. Maybe ear holding is my son’s giveaway. Is he out of the woods? no but energy depletion is no longer a problem for him thanks to enzymes, omega 3, lutimax, phosphatidylserine and probiotics. If the cells can’t function the body won’t either. The poisoning they exprienced as babies takes a tremendous toll on them physically. It caused mitochondrial toxicity followed by dysfunction. Mitochondrial Dysfunction symptoms mirror autism symptoms. I remember a mitochondrial expert talking about how there is a subset of kids (our kids) who are walking a knifes edge and, if their toxic load is too great, their mitochondria can be pushed over the edge leading to a dysfunction.
here are some good articles on the subject:
Mitochondrial dysfunction in patients with hypotonia, epilepsy, autism, and developmental delay: HEADD syndrome.
http://www.ncbi.nlm.nih.gov/pubmed/12174964?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Has Your Child with Autistic Symptoms Been Properly Screened for a Subset of Mitochondrial Disease Known as OXPHOS?
http://www.autismfile.com/science-research/has-your-child-with-autistic-symptoms-been-properly-screened-for-a-subset-of-mitochondrial-disease-known-as-oxphos
Mitochondrial dysfunction in autism spectrum disorders: a systematic review and meta-analysis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3285768/
Wow, Yankeegirl! Thank you for taking the time to post those links and the names of the supplements that worked for him. I’m thrilled that your son is doing so well! Here’s to recovery all the way!
You’re welcome Ironmuffin. I try to share as much information as I can on this so parents can be informed about the link between mito dysfunction and autism. Mitochondrial dysfunction is thought to be at the core of many common conditions including autism.
Please watch this:
ABC News report: “Possible Causes of Autism There might be a link between a mitochondrial disorder vaccine and Autism.” – Dr. Timothy Johnson interviews Mitochondrial expert Dr. Bruce Cohen, Cleveland Clinic
http://abcnews.go.com/video/playerIndex?id=5287814
“Children With Autism Have Mitochondrial Dysfunction, Study Finds” – Science Daily
Nov. 30, 2010 — Children with autism are far more likely to have deficits in their ability to produce cellular energy than are typically developing children, a new study by researchers at UC Davis has found. The study, published in the Journal of the American Medical Association (JAMA), found that cumulative damage and oxidative stress in mitochondria, the cell’s energy producer, could influence both the onset and severity of autism, suggesting a strong link between autism and mitochondrial defects.
After the heart, the brain is the most voracious consumer of energy in the body. The authors propose that deficiencies in the ability to fuel brain neurons might lead to some of the cognitive impairments associated with autism. Mitochondria are the primary source of energy production in cells and carry their own set of genetic instructions, mitochondrial DNA (mtDNA), to carry out aerobic respiration. Dysfunction in mitochondria already is associated with a number of other neurological conditions, including Parkinson’s disease, Alzheimer’s disease, schizophrenia and bipolar disorder.
“Children with mitochondrial diseases may present exercise intolerance, seizures and cognitive decline, among other conditions. Some will manifest disease symptoms and some will appear as sporadic cases,” said Cecilia Giulivi, the study’s lead author and professor in the Department of Molecular Biosciences in the School of Veterinary Medicine at UC Davis. “Many of these characteristics are shared by children with autism.”
Continue reading… http://www.sciencedaily.com/releases/2010/11/101130161521.htm
Thank you for saying what I feel!!!!!! I never, ever again will say, “Oh someone needs a nap, or a spanking, or time out.” I’m a grandmother of two autistic grandchildren, and had to lay on top of them melting down in front of at least 500 people looking at me, and being looked at trying to enjoy a meal out, you know what I’m talking about. My 6 year old granddaughter was fine, starting to walk, talk, play ball, then after shots just stopped. Started bouncing, crying all the time, in her own little world. I have a wonder daughter I have to help much, she did spread our little boys shots out and only did them when he needed them, so not having to worry about the law stepping in. He don’t seem as bad, but getting there. Seem like nobody is listening?
Norma, I hope and I pray that you will find peace and healing for your grandchildren. Thank you for commenting. xoxo
YOU.ARE. SUPER! Thank you for saying it all. I’m also guilty of using the blasted measuring stick and always feel so guilty that that it is something I NEED.
Thanks Diane! I hate that measuring stick too. HATE IT! Here’s to new horizons where it is NOT needed.
This gets me in the pit of my gut. I see how much better my son is next to his peers and yet, if you saw him….would you only see how much better off your daughter is than my son? I am going to rethink what I think when I see others out there. I know how far gone my son was. Dr. Kartiznel called him the worst case he had seen when we met. I was told over and over by schools, therapist, ect., to get him housed as quickly as possible. One Md even told me, “A puppy is cute, but a huge dog is not when it still acts like a puppy. Your son is that dog, he is nothing more than a pet, get rid of him while he is still cute.” But we didn’t we fought…and made great strides…still do people look at my young adult man and only see what we did not accomplish? I wonder. Yes others got the full recovery we didn’t. Others got talking kids, kids who can read and write…we didn’t. vaccine damage does not play fair.. time to end vaccine damage…time to help people understand….vaccines are profit driven brain damaging failures.
One Md even told me, “A puppy is cute, but a huge dog is not when it still acts like a puppy. Your son is that dog, he is nothing more than a pet, get rid of him while he is still cute.”
Please tell me you’re joking and that the Dr. didn’t really say this to you. I am beyond horrified. Comments from dr.’s like this need to be reported to the news media. I know we have to endure horrendous stupidity from the uneducated public…but WOW!
I applaud you for not doing something that would have landed you in jail. Way to go Cheryl!
Cheryl I’m so sorry you had to hear that.
In my post, I debated over keeping a sentence in there but ultimately took it out. I had said that she is always the most severe kid in any setting I’ve ever had her in. It crushed me to look around and see it. I got into the habit of assuming she was bad off and never questioning it. This is the first time in 11 years I noticed she wasn’t as bad as I thought she was (granted, still bad off). It took me a full 24 hours to figure it out, that’s how thoroughly I had programmed myself to just go ahead and assume the worst and avoid the pain of analyzing it. This was my first time experiencing anything other than that. I would hope that if I saw your son while out, I would instead walk beside you and commiserate…maybe even about horribly insensitive doctors.
Sorry, replied in the wrong place. Just wanted to also say that I was not heartened by the differences between my daughter and Joey. It only left me sad and very angry.
Fantastic article. Paragraph 7 is especially moving and masterful.
Why do we see the damage but medical professionals do not? Or if they do, why do they repress the knowledge
Thank you for the kind words!
My favorite thing to say is, when money talks, morals walk. I can’t think of any other reasonable explanation for – to borrow a phrase – the callous disregard. I do believe some just follow blindly but their intentions are good.
I think you nailed it, Iron Muffin. Morals walk. But they don’t walk brazenly out the door, they slink slowly under the radar — even for the person who had them in the first place. They can’t afford to see what they have done.
This.is.fantastic.
Thank you Lisa!! Thank for reading and commenting!
Ugh typos…too many little feet near me. 🙂
Good for you. Hope your daughter continues to improv.
Thanks Rebecca! We’re working on it. 🙂
Thanks for the post. I needed a little kick to my backbone this morning. I’m headed to a family reunion full of doctors and ‘brainy’ types who dismiss my claims. Thanks for the ‘kick’ I needed to stick to my guns.
~Christy
I’m thrilled to be of any help at all. I hope all goes smoothly for you! I’ll be sending the positive vibes your way.
Christy, why don’t you just ask these brainiacs why challenge, dechallenge, rechallenge is considered sufficient proof of causation for antibiotics, analgesics or any other type of drug but is invariably dismissed as coincidence for vaccines? I’ve found that not a single doctor has the slightest clue how to answer this.
Just ask them what they would do if they prescribed an antitbiotic to a kid with an ear infection and then the kid was even sicker the next day, so they wait a month or so and then, after having given the kid another round of antibiotics the child is in hospital. Ask them if they would continue to presribe the same antibiotic – and if not, why would they keep on vaccinating when they see the exact same phenomenon over and over again.