I think Autism is iatrogenic, an illness induced inadvertently by a physician. I’m sure the ever increasing toxicity of our environment and the damage we have done to food contributes enormously. But for many of our kids, I believe vaccines and antibiotics are the toxic tipping point. For that reason, I think it’s possible that Autism could be eradicated, perhaps even in my lifetime. We brought Autism into this world; we should be able to take it out. Not everything man made has an antidote. Some things should never be combined or created in the first place, like the nuclear bomb. It’s possible the epigenetic damage will leave a permanent thread of future dysfunction in the human population. There is a natural balance to nature and Autism is showing us that something is wildly out of balance. I’d like to believe that we can correct this and order can be restored.
In order for Autism to end, it will take humility on the part of the medical profession to admit that vaccines and antibiotics need honest, transparent investigation outside of the pharmaceutical industry which profits from their use. Vaccines also need to be examined outside of the federal bureaucracies that mandate their use. The answers will be clear. Perhaps as clear as the linear and causal link between Thimerosal and neurological damage Verstraeten described in 2000 in the Simpsonwood transcripts .
This is the Rev’s son in darker days…
Jumping ahead through all of the painful legal process and shifts in accepted medical dogma around how we support the health of small children, let’s imagine that Autism decreases at an incredibly rapid rate after these changes. As Autism is quickly disappearing ethical historians feel it is imperative to capture this sociological event for society to learn from and not repeat. A Museum of Autism would be created as we have created the Holocaust Museum with the shared theme of “Never Again”.
Entering the Museum of Autism a visitor would be led through an exhibit that begins with documents describing Kanner’s first patients. Except this time we don’t shunt aside the medical problems he describes in their intake histories. These are the same medical problems we see with our autistic children today. Instead they would be highlighted as would the history of Pink’s disease and it’s complete eradication after teething creams with mercury were discontinued. Next a display of Bettelheim’s ridiculous theories about the ‘homicidal mother’ and therapies where autistic children were encouraged to make clay forms representative of their mothers and then smash them. The exhibits continue with the dark history of Autistic children sent to residential care as the pediatrician commented, “Forget about them and get on with your lives. Have another child.”
A beginning glimmer of hope emerges in the exhibit with a discussion of Lovaas’s ABA method and the brand new idea that Autistic children could improve. Then the numbers of children diagnosed with Autism begins to surge around 1984 and we start to see that spark of hope ignite as the first ‘Mercury Parents’ outlined in David Kirby’s book Evidence of Harm start the parent led activism that has brought us out of this despicable nightmare. We see the dawn of DAN medicine when physician Autism parents, like Bernard Rimland, refute the ridiculous party line because their experience of autism is a sick child, a child that needs medical care. The history continues with the saga of Dr. Andrew Wakefield who dares to question the safety of the MMR vaccine and is vilified for it. Autism Speaks steps into the fray and Jenny McCarthy picks up the mantle of hope. The numbers become staggering and parents become educated. As parents function as wise consumers of medical care for their children the pharmaceutical hold on pediatric care begins to crumble. This is where I think we are today. Daily greater numbers of parents are refusing to support ‘one-size-fits-all’ vaccination programs insisting on pediatric care based on real science and a hearty dose of common sense.
I ask myself; “What would I donate to the Museum of Autism?” Perhaps I would give them the note my nt daughter wrote to me when she was seven years old after watching me emotionally fall apart in the front seat of the car one day. The note reads;
“mummie everything will be o.k. Dada will be abel to fix it.”
I would be happy to get rid of our couch which tells the story of autism with fish oil stains, broken springs from endless jumping, gluten free crumbs flying up between the cushions along with PECS and obsessively collected Subway cards. I’d also happily let go of the trail of OCD items my son has carried for emotional comfort which includes; Starbucks coffee cards, bendy straws, and the book Chicka Chicka Boom Boom.
Could we have a fire pit where parents could burn IEP’s, and Neuropsych reports? Or perhaps we could burn the stacks of expensive and absurd studies purporting that Autism is caused by mothers with big boobs or dad’s who choose non-english speaking wives so they won’t notice their poor social skills, parents who are too old or too smart or too tech savvy?
What would you donate? What items would tell the story of your family’s Autism experience? A plunger or monogrammed toilet snake, or the cell phone number for Wayne from Wayne’s Drains? Toys never played with or clothes never worn because they are outside of the child’s sensory comfort zone? Locks broken or fences leapt over?What do you need people to learn from your heartbreak? What would you put in the Museum of Autism that will teach future generations “Never Again”?
- MaMa Mac
Children’s Theather vouchers given by a family friend to my son as a birthday present when he turned 3. He had no attention span whatsoever, no interest in watching anything anywhere, no interest in stories or perfomances, no tolerance of crowds or other children or noise or sitting down in one place or looking at anything apart from closing credits to one particular episode of one particular tv show.
He is 8 now and after years of biomedical treatments and interventions doing very well and very into going to cinemas and theatres and football matches and paying attention and sitting amongst crowds of noisy children.
The vouchers are no longer valid, expired long ago. I’d like to add them to the pile please.
Oh…I have so much to donate to the museum. I have a few thousand silly bands I can donate. And about 100 pairs of sunglasses because we are OBSESSED with them. And an ass ton of motorcycles that don’t get played with, but get visual stimmed on a-plenty. Plus I have bags upon bags of used m-b12 syringes that I haven’t dropped off at a needle disposal. That is just the tip of the iceberg here. Excellent post, Mama Mac!
SO Beautifully written…Mama Mac…. I can’t even sit here and think of what I would donate, it’s just too painful right now. One day I will, one day….
I’d donate the five photo albums filled with beautiful baby and toddler photos taken before the plunge into severe vaccine-induced autism…that I haven’t been able to bear to look at in over ten years now, that are jammed so far under my bed I can’t even reach them anymore.
Incredible post, MaMa Mac. Simply incredible.
Beautiful job!
What would I donate? Well, I have hundreds of dollars worth of barely (if ever) used sensory therapy tools that we tried. Weighted vests, lap pads, fidget toys, scooter boards, chewy tubes, etc. I have about $1000 worth of kitchen equipment and books that I bought in an effort to try a raw food diet for gut issues. All that effort, and the child would not eat a SINGLE thing I created for him. (He eats a largely raw food diet now, in the food’s natural state - a handful of berries, carrot sticks, etc - nothing blended, dehydrated, or all chopped and mixed together) On second thought, scratch that - I’m keeping the bad ass blender. It makes killer margaritas!
If we ever get to the point where an IEP is no longer necessary, I would happily donate my IEP folder from Aidan’s Kindergarten year. So many meeting, so much documentation. That sight of that binder STILL commands the attention of all present at an IEP meeting. Don’t mess with this Mama!
And finally, I would donate a copy of Dr. Robert Melillo’s book, “Disconnected Kids.” For me, this was the first book to jump up and scream, “THIS IS IT!!” Through this book, we found the Brain Balance Program and HOPE. And in working hard with the Brain Balance Program, we made healing and recovery a reality for Aidan.
Much love to ALL of the Thinking Moms and Dads out there - you are ALL inspirational!
Allie…I’m coming over for a margarita!
Sunshine…c’mon over, anytime! Open invitation!
With Allie’s penchant for a good Margarita sounds like she’d fit in real well with the Thinking Mom’s…
You guys come visit me and Allie can come over from across town with her blender. Tequila’s on me.
I’m SO in! Let’s do this!
After thinking about this for a while - I’ve decided that I would donate a replica of my living room and I would call it “comfort in chaos”. It would be one of those pieces where the more you looked and studied it, the more you would see. Nemo would be playing on the TV (only the scene where Marlin and Coral lose their babies), a collection of DVDs would be piled in the corner (but never to be straightened), a pile of foam letters would be on the floor and occasionally things would be spelled like “exit” or “jef glor” (CBS News anchor - only one ‘F’ because there’s only one F in a complete alphabet set - duh!), books would be on the floor - but only certain books and they have to be in a certain place, piles of markers take center stage as managing multiples of things is the most comforting practice of all, a collection of plastic horses would be laying next to the markers along with the rubber dinosaur set and beanie baby bears. Patrons would eventually notice the need for the floor to be cleaned as well as the finger prints on the TV screen which is how my little one with autism has learned to read. There would be a cat wandering the floor looking for a safe place and finally, an iPad would have “Hop on Pop” or “The Foot Book” playing but you would only hear one word from the app, something like “sm-sm-sm-sm-small-all-all-all-all” for the entire 10 hour duration of the battery. It would be hard to see the love but because I know that there’s comfort in chaos for my boy - the love is everywhere.
That’s beautiful, Amy. When we’re looking for guest bloggers, we’re going to have to contact you.
I’d be most honored - do I get to swear?
We should let her swear. Most definitely.
Yeah, most of us aren’t opposed to some swearing — or a lot of swearing — now and then.
One photo. The one of my precious baby boy fighting for his life in NICU - right after he received the hep B shot.
Thanks, Mama Mac for such a thought-provoking post.
I think that would be a very powerful addition. As a matter of fact, there’s someone I know thinking of getting the hep B shot for her one-week-old that I would like to show it to. :-/
Our houses are already Museum’s of Autism.
Amen, sista! All of the surfaces covered in tracks galore!
I would bottle up all of the crying and screaming (from both my son and myself) from all of the years of pain so that others could experience the realness of autism. Just reading words is not enough. And then I would show some of our videos of pure happiness filled with laughter, as we have thankfully come so very very far (but not yet far enough…).
I would donate all the millions of medical bill forms and all of the out of pocket receipts for ABA and other therapies that all the parents of these amazing kids must pay themselves in order to bring their child back to them.
And this donation would be in honor of my amazing warrior mama friend Cathy Jameson and her wonderful son Ronin. She makes me proud to call her my friend EVER SINGLE DAY and I believe she is the reason why my younger 2 children don’t have ADD, allergies, or a spectrum disorder since she is the reason why I began to dictate my own vaccine schedule after their births.
WONDERFUL WONDERFUL post!
I love one thousand headless, limbless three inch plastic bendable animals…which have been carried around for YEARS. And the original obsession - Steve’s Notebook and Crayon from Blues Clues. All I have to say is: Thank God for Ebay!
Hilarious. The same Christmas we got B an ipad, we got him a handy dandy notebook off ebay (I’m sure originally $5, I paid $30). To see the excitement on the boy’s face when he opened that present was enough to sustain me for about 4 months. I cried, like ugly cry. The $500 ipad? Eh, he came around.
He lost the original notebook we got him. Or I should say WE lost it. It was absolute HELL! His OT tried to make him one on the computer. Um…No way! We gobbled up all the available notebooks on eBay at the time…and we kept tabs on them at all times!
I have spent many days dreaming of this MaMa. A day when the whole world knows about The Greatest Medical Mistake in History. Millions of children worldwide…taken down by a greedy and egotistical medical establishment. Originated in the Great United States of America. As I like to say, I’d certainly cut my arm off with a credit card if it would make it known TODAY. I’m sure you all would join me.
Powerful post today…thank you Mama Mac. So much I’d want to donate, so painful to think of right now as well…
I think youtube should be continuously playing in the background at the museum. With videos of vacuum cleaners, elevators, movie credits, the baby einstein caterpillar inching his way on the screen with that horrid music, other intro logos like the pixar one with the light. Alternatively have continuous video of a febrile child screaming his F-ing brains out suffering from vaccine-induced encephalopathy.
Kristine-that febrile scream of vaccine induced encephalopathy is what we lived with Nick. We had 6 nights of it, beginning 16 days post MMR, Dtap and Hib given on the same day. Stupid pediatrician who got us into this mess told me “no worries, just night terrors”. Yeah, well he was wrong. That scream is what keeps me political and what keeps me putting the edge into my writing. We are not going to clean this mess up by being polite and refusing to discuss the nasty parts. My child suffered a brain injury and I held him in my arms while it was happening - non the wiser - NEVER AGAIN.
“Just” night terrors. Anyone else wondering if the night terrors so many children, autistic or otherwise, experience have any relation to this crap? I’m starting to wonder about a lot of things that I was told were “normal”.
Perhaps a few sample court transcripts of the divorces and bankruptcies associated with the stress of meeting such a heart-breaking, special need of an innocent child.
Film of the hours of cooking, crying, and researching spent trying to get a child healthy again. Maybe an entire room filled with the supplements and prescriptions we’ve tried, sometimes successfully and sometimes in vain.
Copies of family budgets comparing a “normal” family to a special needs family. Oh, and how about a huge pile of denied medical payments… out of the family’s own flex account.
Giant pile of stained burp cloths; pyramid of prune babyfood jars; plumber’s snake; rows of toy soldiers, matchbox cars, little plastic animals all lined up; bottles of bubblegum flavored antibiotics; empty syringes. A model of our old house, made out of papier mache from the second mortgage and home equity line of credit paperwork. Childrens’ clothes sized 3 years younger than chronological age. A totebag from DAN! 2005 Conference. A giant clear trashcan filled with empty supplement bottles. A bookshelf full of binders — psychologist’s diagnosis; 1:1 aide daily reports; lab test results; daily meal and supplement checklists. FedEx receipt from sending pee to Paris, France. Piped in magnified sounds of a public toilet’s whoosh. Piped in sulfurous smell of TD-DMPS. On the left wall, projected photos and quotes from all the people who were singularly stupid, unhelpful and downright dangerous to our recovery. On the right wall, photos and quotes from all those who helped. Behind me, pictures of the friends who stayed. On the floor, under all the garbage, pictures of the former friends who wrote us off.
Awesome. Poetic.
I’ve never been to France - but my son’s pee has. Such is our life now. ONWARD!!
Just got the 19 year old home and finished helping him in the bathroom. I would like to add his photo worthy poo and our plunger. Although not really a museum quality oddity, as most affected familys have poo stories.
What would I personally donate to the Autism Museum? I would contribute photos of my son John. I’d have lots of the cute baby ones where he’s focused and laughing, curious and engaged. Then I’d have the ones that were taken AFTER he’d received a regiment of vaccines with deadly, poisonous ingredients. Those pictures showed a toddler who looked very underweight and scared. He resembled photos of a child who’d survived the Warsaw Ghetto. In those pictures he never smiled.
On another level, I’d have lots of news clippings from every major paper in the U.S. They’d be from the years of pathetic, worthless stories all saying things like:
“All the autism is better diagnosing and no real increase.”
“Studies show no link.”
“Autism only affects communication skills and social interaction.”
“Autism is a genetic disorder children are born with.”
“Parents who blame vaccines for their child’s autism are wrong.”
I’d have all the NBC, ABC, CNN stories slamming the autism community. I’d have NY Times stories with Paul Offit raving about non-vaccinating parents and ignoring autism.
We have to admit the truth. We have no future if we don’t. And we have to remember all the lies and denials. “Never again.”
Anne, I would like you to donate every comment you have ever left on an article about Autism in the media. Considering you often leave nine at a time on some of the lousiest pieces I think your comment collection could sink a ship! Titanic metaphor is apt here I think! Thank you so much for coming over here to TMR and come again often!
I’m just going to thank you for having the persistence to make all those comments over the years. I’ve gotten more vocal in my “old age,” and one of the reasons that I can keep going when the crazy gets me down is seeing your posts, always ahead of mine, always filled with facts and links no matter how much crap is thrown at you. No matter what it feels like, KNOW that you are making a difference.
This is such an amazing blog! Thank you for writing it! Now that my son is nearly 22 years old some of the things I would donate to the Autism Museum, I just got rid of in a garage sale! That would have been his spring horses (small size and large size) that he rode so much we kept a bag of springs to constantly replace the broken ones. The swing that came after he out grew the spring horses, then the trampoline after the swings! Plus the Dumbo movie that he watched at least 2,000 times. But most of all I would look for a green little Yoshi stuff animal that I accidentally threw away when he was 8 years old and traumatized him for months. He still wishes he had it! A photo of my son on his spring horse definitely, because that was pretty much the only time he showed joy on his face. Even so, through all the years of tears and frustrations, I am so thankful for my Special Cowboy! Again, thanks for writing this!
I would donate the small set of golf clubs to the Autism Museum. My son looked like a potential golf pro with a smooth swing until he reached his toxic tipping point with his school shots. I have photos, too. Don’t we all?
I would donate the two videos I made of my son’s journey from the beginning so people can SEE the devastation it had on one family….that actually tells the story for SO MANY FAMILIES. It’s the SAME story over and over and over again…. Our kids are fine until something HITS them and they somehow end up with a LONG LIST of MEDICAL ISSUES! I will also donate my bank statements to prove there was no insurance coverage for any of the “autism” treatments…..and I will finally donate the divorce decree I signed last month from the intense stress and strain it put on my former marriage! This is the reality. This is what happens. (sorry guys, i am on a mission these days….and it ain’t pretty.)
NEVER apologize, Jacey. We are not apologizing. As The Rev recently said…OUR KIDS are the ones who deserve the apology from those who have done this to them.
Such a fabulous post, thank you! I have two videos of my son that I want played side-by-side: one of him on his first birthday, smiling and laughing, following the conversation and socially engaged. Next to it I’d play the video from his second Christmas. He is 19 months old and shows no awareness of the people and events around him. He has dark circles under his eyes. I’d donate the shot glasses, oral syringes, pill boxes, and tiny spoons that I use to mix up and give his supplements. Trying to think of more things, but like someone else said, my whole house is a museum to the autism. The museum needs to be WAY out in a field or something because of how isolating autism is.
Oh and I forgot- my amalgam fillings, the source of the mercury poisoning in my unvaxed child, would need to be included.
I would love to donate the letter that I have yet to write to the OT in my son’s early intervention program that told me repeatedly at age 2 that he just needed discipline. I have no need to see the woman again untl middle school, he’s only in kindergarten. 5 more years to perfect it…
I would donate the taca cards, and t-shirts and buttons that explain that my son has autism. I will donate my credit card debt from biomedical, books, conferences and everything else autism related. they can have a copy of my and my sons daily schedule that we must follow without rest if recovery is gonna happen, and it is happening! Thank God it is happening, but what a job we have in making it happen!
Anne Dachel I love you. Thanks for gracing us with the gift of your presence. Respectfully, The rev
Pingback: Feb 28, 2012: MaMa Mac Ponders the Future… | The Thinking Moms' Revolution Starts Here