By Anne Dachel
Like most everyone out there, I get a lot of information from my Facebook page. So many articles and videos that I would never be able to search out for myself, instantly appear there. I really appreciate what my 4,100+ "friends" post to me.
I recently found this: Life with Autism in Pictures: The lion who had no courage.
The photo really needs no words. It's a mother with her disabled son. The young man in diapers is the side of autism we never see in feel good stories during April, Celebrate Autism Month. The photo made me think of Michelangelo's Pieta, the Virgin Mary grieving as she holds the body of her crucified son, Jesus. Or maybe one of the Mary Cassatt paintings of a mother and child. The image of this maternal bond is universal. It's also heartbreaking when it involves someone who was left like this because of the vaccines he received as baby.
The young man is Brandon Guppy, age 20, shown with his mother, Michelle. Michelle has the blog, Life with Autism in Pictures,
where she writes about her son. More importantly, she shows us photos of what his life is like.
"On my 'Life with Autism' blog, it is my hope that the words you read are inspirational in some way. But on this blog --- I wanted it to be different. I wanted the pictures to be more powerful than the words. Here will be some of our most powerful pictures in our 'Life with Autism' - with only a few words to explain..."
Monday, Sept 8, 2014, Michelle posted, "The lion who had no courage" that reads like a journal account. She specifically addressed members of the media, admonishing them to cover this issue honestly and thoroughly.
"Doing away with vanity & dignity tonight.
"I'm sure Brandon would forgive me if perhaps it would make one member of the mainstream media try and help him... I doubt they'll ever see this, much like I doubt today's seizures would be the last. But, one can hope....
"He's had seizures yet again today...and finally at 8 pm he tried to get up. He's been on the gymnastics mat on the floor of his bedroom right where he landed from the first seizure in falling out of bed this morning. Most parents have the luxury of waking up to the sound of an alarm. I frequently wake up to the sound of choking, some body part banging against the wall, or a loud thud as he hits the floor. I met him in the hallway and by the look in his eyes I knew we better go back in his room and not dare try and go downstairs. It's hard to describe seeing your child like that...."
Michelle criticized the media for failing to report on the CDC whistleblower scandal.
...When Todd got upstairs from hearing him have a seizure, I asked him to take this picture. I want the media to see who it is they are silencing by refusing to report on the CDC Whistleblower story. I want them to see just how "vaccines save lives" actually plays out in real life. I want them to see what the trade off of acute recoverable illnesses for chronic lifelong debilitating illnesses looks like. And as much as they try to ignore it, that trade off does have a face. And there are thousands of them. I want them to see this and be brave enough to look me in the eye and ask me which I would rather my son have had - a miserable two week ugly rash in measles that would provide a lifetime of immunity and a stronger immune system for having survived it; or a lifetime of illness and seizures and a weakened immune system. And I want them to show that answer to the world.
I want them to see who they have forsaken as an accomplice to their preservation of Pharma's fairytale illusions of health, herd immunity, and the greater good.
His seizure may have been in my arms - but make no mistake mainstream media -- the tears I've cried in begging God to end this nightmare of CDC corruption and fraud, his seizures, his pain, his lifelong illness -- is all in your hands.
Perhaps the only thing worse than your silence in his suffering, is how the only voices you have allowed, are from those who profit from or force through mandates -- his suffering.
You can't see it, but on the wall behind me is a scripture verse that says, "Love....bears all things believes all things, hopes all things, endures all things...."
As I sat there holding my son, I wondered how many more seizures his body can bear.
I wondered how much more we parents must be made to endure.
I wondered if I had anything left in me to dare to allow myself to hope, to believe, that justice would come to him in my lifetime.
The justice Congressional Hearings and convictions would bring.
You could do that mainstream media.
You could help us call for those.
But you don't.
It would be better for you to be a tin man with no heart or a scarecrow with no brain, than to be a lion with no courage.
Sadly for a generation of children, you're all three.
Michelle has channeled her pain into photos and stories about her son, and they are powerful. They give us a look into what Brandon's daily life is like. She describes what autism has done to her son. It's very hard to view her work and then realize that mainstream medicine, health officials and the media just don't care about individuals like Brandon. I contacted Michelle to thank her for doing this and to somehow let her know that many, many people can relate to her life.
I asked her some questions. Here's what she told me.
Michelle, tell us what happened to Brandon. How was he diagnosed? What is he like?
Brandon was born typically....a healthy boy who smiled and had personality and laughed.... He has a brother who is eighteen months older than him, who was born healthy as well. Nothing significant stands out in Brandon's infancy, except for, looking back over medical records, how I would bring him to the Pediatrician after each round of vaccines. First for thrush, then for eczema. Then worse eczema. Then for ear infections, more ear infections. All the while, at those visits, getting more vaccinations. He stopped hitting developmental milestones, emerging language of 6-8 words stopped and then chronic diarrhea began. His personality changed where he would rather stay in his room and bang his head against the wall while rocking back and forth. His smile faded, in its place that cold, strange stare that was so haunting. He couldn't stand to be strapped in a car seat or have anything touching his body he had such severe sensory dysfunction. When he would accidentally fall and have an obvious cut or goose-egg, he would laugh. Yet when we tried to hold him gently, he would cry. Where he would once wear hats, he eventually had to wear a seizure helmet.
To describe both my boys would be like describing the sun and the moon. Brandon's older brother who is typical, is like the sun -- he's full of color and lights up our house with the brightness of language and laughter. Brandon is like the moon -- he is a soft glimmer of beautiful shadows in the silence. That silence conveying what language cannot say. To describe Brandon is to start with how through years of painstaking therapy, he has come such a long way from when he was first diagnosed. He is a warrior - he is who grounds us in staying centered on what and who truly matters in life. To live with him is to be daily inspired by his strength and courage. He lives for the moment. The, pain, laughter, goodness, or hardship of each moment. He laughs when happy, and screams out in frustration when in pain. He simply lives in innocence. He teaches us more than we have, or ever will, teach him. The moments where we get to see the boy God created are magical and we have learned to simply inhale those moments deeply and savor them, as we do the rare pictures where we see him, not autism. His rare moments of pain free laughter get us through those next moments of anything but. He loves his straws, jumping on the trampoline, and being wrestled by his dad. To describe his autism is painful. It is pain. He's had years of chronic diarrhea that would literally burn the skin off his bottom to the point of bleeding. He's been to the emergency room countless times from seizures.... stitches, staples, IV fluids from being knocked out for days. He's had teeth shattered, several times. He has knocked holes in our walls from the force of seizures. He has cycles where he will sleep and cycles where he won't. It is rare that because of those sleep patterns we can even get to school on time, and then there are the many days he never makes it to school because of waking up having seizures. Autism dictates that his life is lived one painstaking step forward only to be blindsided by something else that knocks him two steps back. It is exhausting caring for him and there is no down time while he is awake. He requires constant supervision and redirection. We must assist or prompt in every life skill. What makes our "Life with Autism" so much more difficult, is that we have never found a mainstream doctor who would take the time to truly investigate all the myriad of biological disorders he has. So instead we must spend every dime we have on seeking out "alternative" doctors whose treatments that do help, aren't covered by insurance. You cannot describe autism without including the lifelong financial devastation it brings.
You are very clear in your writing that vaccines cause autism. Why, in your opinion, are doctors so blind to what is happening to our children?
I believe that doctors can only share with their patients what they have been told regarding vaccinations, safety, necessity, etc. I don't think doctors have the time to research on their own. From sources other than who they work for, what they get from the AAP, CDC, NIH, or Pharma-reps who peddle their pills and poisons in their office, -- I think, I would hope, that if they truly investigated on their own, data and research from independent sources, they would have a different view. I think their CEU's and all that they are required to do, are all from Pharma in perks and etc. I think they are dazzled by their illusion of health. There is too much conflict of interest. Especially when you hear doctors are given incentives or rewards for having high vaccination rates, etc. I think doctors have been as duped as the parents have. Like the public, doctors are only receiving information from one source, and sadly for a generation of children, that source is fueled by making money and customers.
How have you been able deal with having a son with such critical needs? You say a lot about your faith.
It is hard. Unbearably hard. I won't deny that. Some days when I drop him off at school, I leave skid marks in leaving! That's obviously not true -but I do think of doing that. Honestly though, some days I do think what it would be like to just keep driving.... To just for a while run away from autism and its the hardship and stress. I miss carefree. I miss spontaneous. I miss my husband and we live in the same house! I have missed most of my older son's childhood. My husband and I had to be tag-team parents, and the scarce family vacations we took were always one with our "other" son and one home caring for Brandon. Autism takes, and takes, and takes some more. And just when you think you can't take anymore, it gets its second wind and takes even more. Which is why respite is so critical. Parents need time off. Autism is just too heavy, we need frequent breathers, and we just don't get it. Either we can't find anyone or when we can, we can't afford to pay what they would charge. And with so few program and opportunities for recreation for them, not only are we as parents isolated, but our kids are too. I don't want to go out for dinner with my husband if it means yet again, my son is stuck at home. He needs to go out appropriate for him, and have fun too. For me, my faith is what keeps me closer to sanity than falling off the edge of crazy. I do not believe that God created children to be autistic. I believe autism is a man-made disorder. But that in that autism, there is purpose. I seek that purpose each and every day. In how his life can somehow make a difference. I believe in the HOPEISM of that purpose -- in that one day there would be healing for him, but in the meantime there is much hope. That we are not alone in our pain, in our suffering. That we are not forsaken. It was in prison where Paul preached some of his greatest sermons... I want my faith to be like that, in how I have somehow managed to make this "Life with Autism" my greatest ministry. My greatest advocacy in moving people off the couch of complacency to be brave in standing for truth and taking back our children's health from corporate greed and Pharma's poisons. Where until he is healed, perhaps inspiration from the bravery and courage by which he lives his life, heals or encourages others.
How do you feel about the way the media portrays autism?
It's hurtful. I've never been bullied as a child, but after years of battling the media and their one-sided portrayal of anything autism, or worse, wrong portrayal, I can somewhat understand the oppression, the burden, the feeling of futility bullying brings. I will never have enough time to refute each blow, I can never outspend each bully. The media adds to our burdens with more burdens of trivializing our truths. Dismissing our concerns. They choose the most successful of the spectrum to portray the entire spectrum as but just people who have differences. Autism for me, and for many of my friends, is not a difference, is it a devastating disorder. My son has never played cowboys and Indians. He's never had the ability to understand sports to play T-ball. He's never understood he has a birthday, let alone enjoyed any celebration of that. He's never had a sleepover with friends. My husband has never been able to teach him life skills at Boy Scout Camp, instead he helps him get dressed, teaching him those life skills at home. He has never danced with a girl at prom. Had a girlfriend. A first kiss. He will never drive a car, have a wife, or kids of his own. My husband will never get to retire and we will never have empty nest. Yet all we hear from are those who can speak for themselves, care for themselves, have a job, live on their own; while my son cannot even speak. They listen to those who don't want a cure, when all my son wants is to not be in pain. Not have a seizure. Even autism organizations do this in only showing pictures of perfectly photo-shopped children, youth, or adults in wildly successful scenarios. Of course that's the hope we all have and work our hardest toward, but the reality is never portrayed. That is not my son, that is not our reality. It is insulting how autism is portrayed as a celebration, a gift, something special. It is none of those things. Our children are the lights of our life, it's not about that, it's about how the autism affects and steals from every facet of their life. If autism is a celebration, don't send me an invitation. If it's a gift, show me the return line. If I'm a "special" mom to a "special" child, then I'd rather be whatever the opposite of that is, and just have had the chance to be a regular mom with a regular child.
Your son is 20, what is your hope for his future?
That the Lord return before I die. That is my "Plan A." I cannot bear the thought of dying and leaving my son behind. It gives me nightmares that I cannot escape. It's in my every waking thought, and no amount of faith or praying has diminished that worry. My hope is that I can find doctors where I live who will take the time to understand his medical issues and help me get access to treatments for those, fully covered by insurance, so that he can lives as pain-free a life as he can. My hope is that he can continue to be in the therapy center he is in with funding assistance to be able to continue to learn how to be as independent as he can be. I pray for funding for camps who want to help, to be able to expand and have weekend camps for them, so while they are having fun and a chance at normalcy, us aging and weary parents can have rest. Community services and recreational programs. All those things I desperately hope and pray for, for him and all who are like him. My ultimate hope and prayer is that when I die, he is not left in a place where he will only be drugged and never have the chance to go outside and jump on a trampoline and see that the sky is blue.
What does our society need to do for this generation of children with autism aging into adulthood?
Find its moral compass again. Realize that people, not profit, matters. It will take going back to simplicity, to where communities work together to provide for each other in that community. Sharing resources and expertise. It will take churches offering their buildings that sit empty most of the week - to open their doors to partnerships with disability organizations to provide the place, if they can help provide the people and training. It will take people not worrying so much about how we can't do something, and being determined to find a way to do that something. Because this generation of children entering adulthood, needs a whole lot of that something. And more.
This is more.
In 2013, Michelle wrote about her IACC testimony. She told them about her son's vaccine-induced regressive autism.
Michlle also created a YouTube video for "Hear Me Well."
"Vaccines didn't save his life, they destroyed his health. Vaccines can and did cause my son's autism."
I think I'll bring this story up again during the insane media frenzy we see every April. Print and broadcast outlets will try to convince us once again that regardless of the rate, autism isn't a serious condition or a real problem. They'll tell us about "better diagnosing and show us happy, engaged kids on playground equipment or interacting with speech therapists. And we'll be reminded that while autism may have no known cause or cure, experts are sure that an ever-expanding vaccine schedule is not to blame.
Anne Dachel is Media Editor for Age of Autism and author of The Big Autism Cover-Up: How and Why the Media Is Lying to the American Public, which goes on sale this Fall from Skyhorse Publishing.