Why You Have To Tell YOUR Story

“The world we live in is filled with dead men.  They stare back at us on the evening news and from the streets of our cities and small towns.  They sip coffee with us, sit beside us at soccer games, shoot emails our way, share our sidewalks and our beds.  We see their lifeless faces, their despair.  At times they are our own.”  Author and Philosopher, Shelly Beach

While I detest anything canned (oh the neurological horror of aluminum) I must admit my response to one of the most common questions we receive at The Thinking Moms’ has become just that:

“You don’t need to have one of us in your town to start your own Thinking Moms group or chapter.  If you know what happened to your children, you are taking steps to heal them and you are sharing the truth in your own community, you are already a Thinking Mom! And of course we do not have “dues”.  We know parents of kids with autism and chronic illness have no disposable income.  Spend that money on yourself.”

Countless times, said to newbies, friendlies, veterans interested in reactivating after recovering  themselves from recovering their kids.  Some look at me with blank stares, shocked that we do not want their money.  Others convey their disappointment with body language–slumped shoulders and furrowed brows. They want a local leader, a Type A momzilla with a motto, a clipboard and an agenda.   But most, most I find are overwhelmed with the responsibility of telling their own truth; for they have yet to tell it to themselves.  Can you blame them?

If you’ve read The Thinking Moms book, you know that the 24 of us pretty much lay it all out there. We bear our souls, and share our lives in the hopes that our stories will help others find their individual paths to healing for their sick children.

To be perfectly honest though, I’ve been telling Noah’s story for years before it appeared in hardcover; and while I was indeed very excited to attend our first official group book signing and felt beyond honored to meet all our readers at Autism One, my heart broke as story after story after story from parents all over the world permeated my consciousness.  Stories very much like my own, the stories of millions, who do not yet know they are our comrades.

Rockstar Mamas Nirit Hull and Bella Hemenegildo with Lisa Joyce Goes at the TMR book signing in Chicago.

 

So many kids.  So much devastation and untreated illness.

One begins to wonder how much longer we can tell it without seeing the fruits of our labors pour forth into the mainstream. How many more cases of autism, ADHD, asthma, allergies and SIDS will it take before the science proving this holocaust is allowed to see the light of day?  We even have a new “syndrome”. Sudden Unexplained Death in Childhood (SUDC) that is defined as, “…the sudden and unexpected death of a child over the age of 12 months, which remains unexplained after a thorough case investigation is conducted.” (Krous et al. 2005)”.  Really?!?!  It is 2013.  What more has to happen for this to become a priority in our country? What happens at the 12 month marker?  Let’s think…let’s really, really…THINK.

Hint for new thinkers:  Reading scientific studies that are NOT funded by pharmaceutical companies is a great way to get started!

Yes, after awhile you get sick of the sound of your own voice.  You get sick of telling that friend whose child has a life threatening allergy to peanuts and asthma that her kid and your kid are not that different.  You get tired of showing her the studies and practically hearing her thoughts out loud, “Hon, I don’t have to read this, Sammy is not retarded—I mean—autistic, like Joey is. Sammy’s just got allergies.”  The same friend then calls you when Sammy is rushed to the ER (again) and hysterically implores you to tell the ER physician everything you’ve told her for the past two years.   Of course, he thinks you are both certifiably insane.   We know what’s in that IV drip they are going to pop into Sammy’s arm to save the day.   After Sammy is stabilized he will go right back home to a steady diet of chicken nuggets, frozen pizza, goldfish, Capri Suns and SPF 30.  Nothing to worry about…they got it all under control.  Sorry for the silly phone call!  The doctor says everything is fine!

Sigh. 

Yes…I know…you know. So very, very many of us know.

We tell our stories about the iatrogenic abduction of our children over and over again, hoping we will spare others.  We are ridiculed.  Shamed. Dismissed.  Another friend of a friend’s child dies mysteriously in their sleep.  Which, while utterly horrid in and of itself, is even more shocking because the pediatrician just told mom that her formula-fed baby with just a little jaundice, and just a little eczema, and just a little thrush was perfectly healthy when she went in for her well-baby shots just the day before.

The sadness of these stories ricocheted off my own issues, as I headed to the park with Noah today.

Yay. Another summer of him screaming “Splash pad! Splash pad!”  From morning til night.  Another three months of daily humiliation as I walk past countless fisherman and sunbathers on the lake while he bites and slaps me with his pants around his ankles after I have warned him it’s time to go home.  Another season of hearing, “Did you see that kid? Is he in a diaper?  Discipline much?” Followed with eye rolls, elbow jabs and laughter.  Why bother telling our story, indeed.  My life is hard enough, thank you very much.

I circled a group of children playing, trying to keep my eye on my little guy who was darting in and out of the fray.  Inevitability the time came to leave and he ran at full speed to the concession stand several yards away.  I finally caught up readily prepared for the standard steely glances and stares.

But this summer, after four years of telling Noah’s story locally, nationally, and globally–that didn’t happen.

Instead we were met with an exuberant “Hi Noah!” by the woman running the stand.  I knew she knew our neurotypical children, who are regulars—but, Noah?  “He is doing great Mrs. Goes.  I saw him here last week with his caregiver.  He’s made so much progress!”

She knows his name?!

While Noah was melting down she proceeded to tell me how well he seems to be doing compared to last year.  When he ran to the dock where they lock up the boats (verboten) they patiently waited until I was able to get him off. Their kindness helped me remain calm, which in turn, shortened his meltdown.

I was physically wiped from running after him, so I needed a quick break to regroup and adjust my backpack for the walk home.  I got him back to the fenced in splash pad area, which sent the false message we were staying.  Another breakdown.  Mach 5 speed, flailing arms and kicking. I struggled to gain control as we passed an elderly couple with a small dog.  “Come on little man.  You can do this. We will be back tomorrow at 9:00 a.m. I promise.”  I attempted to soothe him over his guttural screams and slaps.  Somehow that left hand always wriggles free and lands right on the bridge of my nose. Please don’t let it bleed I cannot take my hands off of him or he will beeline for the lake or the street.

Over the cacophony of my thoughts and the physical drama of this rocky transition I heard someone shout at us. “Bye Noah!  You’ll feel better when ya get home buddy!”

The couple with the little dog; the people I judged because, if they have time to take care of a fussy dog with a jeweled collar, they could not possibly understand my lot in life.  Two people, I’d never met.  We looked back and they were smiling kindly and waving at Noah.  Genuinely.

Like, they knew him.

Because, they do. I have told his story literally hundreds of times. To my friends, his school, my neurotypical kids’ school. Teachers, doctors, nurses, dentists, neighbors, bus drivers, baristas, bartenders, the guy who cuts our lawn, the plumber who came to fix our sump pump, the check out ladies at Target. The meter readers.  Our insurance agent. The people in the park.  Mailperson.  The mayor’s office.  My state representative (who needs to stop sending me laminated copies of articles about my family with the caption “Good Job!” and actually start READING THEM). The press. The police.  Firefighters. Security guards. Mall employees. I am quite sure I will tell it thousands more times before justice is served.  But, it’s okay.  Because people are finally listening to the PARENTS.  Not the archaic institutions, paid lobbyists or the pharmaceutical industry that spends billions yearly on advertising alone.  Nope. Not listening to them anymore.  They are listening to us.  Because we are telling the truth.

We are telling our children’s stories.

Parent to parent.  Human to human.  Soul to soul.

By doing this, we leave an imprint of our collective purpose (healing and SAVING children) on the minds of those we engage. The pregnant mom who looked at us like we were crazy at the pediatrician’s office will be digging for that scrap of paper with our number on it the moment she hears “Boys develop at different rates, sure his head is a little big but it’s nothing to be concerned about.  Here’s another script for augmentin.” *Click* something is terribly wrong here!

People are waking up to this unspeakable tragedy as the evolution of their own child’s illness becomes clearer and clearer.  There’s one.  There’s another one, another…they observe as they begin to see their friend’s children descend.  After months of struggling with their reality, they meet us at the foot of Apathy Mountain, a monstrous synthetic heap of lies built by the opportunists we formerly called doctors, scientists, journalists, representatives of the people—thought leaders.  Like us, our new friends have been forced to become Truth Seekers.  Authenticity Detectors.  Honesty Addicts.

“I know it looks intimidating. Don’t worry.”  We tell them. “We’re revolutionaries. Thinkers.  We move mountains everyday. Sorry you’ve had to join us, but we are grateful you are here. Let’s get to work.”

Every time we open our mouths we are part of the miraculous transformation of social consciousness that is reviving our nation and will ultimately restore our children’s health.  In the process we help people understand our own, seemingly petulant child, is really terribly ill and in desperate need of understanding and appropriate medical care.  By paying it forward, we get paid back!  SCRATCH TICKET!

All of us are changing the world…ONE thinker at a time!  So please…never ever let that moment of hopelessness turn into a lifestyle, as most of those who follow the diet and sickcare system of the western world do. (For evidence of this, go out in public.  Look around.  There you go.)

Do not let the absence of appropriate care and a lack of educated physicians lull you into a false sense of powerlessness. The lure of mediocrity is great in this movement.  The most prominent nonprofits, educational and medical systems professing the height of expertise repeatedly preach acceptance as they assign lucrative lifelong labels to our critically ILL children and cash our checks.  Never entertain the seeds of doubt these outdated profiteers sow for more than a moment.  “Evacuate fear,” as Thinking Mom, Money says.  Move forward.  In your weakest most desperate moment, pick up the phone and call your local paper and ask them for a public forum to tell your incredible story…it has every single human interest angle imaginable.  The simple act of saving yourself and your mindset from despair may very well save the life of another child–and you never know what amazing things that child may do!

Love, The Rev

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