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32 posts categorized "LJ Goes"

Lisa Goes' IACC Testimony

Faith-hope-love-3-shevon-johnson
NOTE: Below is Lisa Goes' testimony to at the 2013 IACC Strategic Plan Update Workshop today.  Thank you, Lisa.

Good Morning.  My name is Lisa Joyce Goes.   I am co-author of The Thinking Moms’ Revolution book,  co-founder of The Thinking Moms’ Revolution, social thought movement,  a contributing editor to Age of Autism, and a human rights panelist for The Academy of Excellence in Learning in the south suburbs of Chicago.  Most importantly, I am a wife and mom to three kids, one of whom suffers the tragic effects of iatrogenic autism.  

My friend Megan is here today, like many of my colleagues, to deliver testimony about my son, NOAH Patrick Goes.  But unlike them, she will be sharing his life from the perspective of my father-in-law. Unorthodox I know but, his observations need to be documented for the public record, so that all American citizens may be privy to the reality of iatrogenic autism and how it directly impacts our society and culture.  

As a deacon in our community, my father-in-law was tasked with the job of writing a homily about what it means to be a true disciple; a man of honor and integrity, who puts the welfare of others before himself and truly serves his fellow man in the present.  

After thoughtful reflection, he decided to speak about our dear family friend, the good Dr. Andrew Wakefield.  Dr. Andy has been instrumental in helping us find proper medical care for our son Noah, who, upon receiving the correct diagnosis of autistic enteritis and esophagitis and receiving appropriate gastrointestinal care for his illness, was finally potty trained in a matter of weeks. This normal milestone for most families experienced during the toddler years came with much celebration in ours.   Not just because we were a household that no longer had to pay the monthly cost of diapers, but, also because after 6 long years of searching for answers to the painful yellow grainy, hot liquid that would pour from our sons bowels, at times, 20 times a day, leaving large raised painful rashes in their wake—we finally had a real diagnosis that lead to viable treatment, rather than the repeatedly documented, untreated and ignored “toddler diarrhea associated with autism.”  

So, along with my immediate family, my parents and in-laws journeyed with us through Noah’s treatment, and grew to know the Good Doctor Andy quite well.  Now, I knew the huge risk my father-in-law took deciding to speak about Dr. Wakefield in this manner.   I asked him, repeatedly, if this was something he really wanted to address from the pulpit.   But he stood firm, knowing Dr. Andy to be a man of character.  So, I sat in the congregation the day he delivered our family’s truth, and spoke to a church that serves over 7,000 parishioners, about the Good Doctor and his extraordinary sacrifice, from a Catholic perspective.  My heart quite literally felt as though it might pound out of my chest as he recounted the litany of facts that lead us to meet Dr. Andy in the first place.  Tears began streaming down my cheeks when he spoke of autism as a “scourge” and told the very real unpopular truth about how incredibly difficult our lives have been since our precious Noah was diagnosed. 

Continue reading "Lisa Goes' IACC Testimony" »

Autism Mom and Cover Girl! Autism File Goes Digital.

AF CJWe're happy to report that you can now download Autism File Magazine free.  Simply click THIS LINK to start your subscription. 

The Autism File, the first magazine ever published devoted exclusively to Autism Spectrum Disorders, announced today that the upcoming August/September issue will mark the magazine’s entry into the world of digital publishing.

Since the first issue of the magazine appeared in 1999, the Autism File has been described by readers as a “lifeline”.  “Thanks to the most knowledgeable experts and experienced parents from around the world, we’re able to present cutting-edge content and critically needed support to families affected by autism,” said the magazine’s founder and Editor-in-Chief, Polly Tommey.  “The new digital format will allow parents and professionals—no matter where they live—to have immediate access to the crucial information provided by our contributors.”

In addition to the magazine’s bi-monthly publication, which will be available as a free download six times per year, the Autism File’s team of editors and writers will provide a weekly update focusing on relevant topics including nutrition, biomedical treatments, sensory issues, advocacy, and safety.  “There is an overwhelming number of concerns that autism families face each and every day, and often on incredibly tight budgets,” said Polly.  “Our readers will now have the latest innovations and strategies for all aspects of living with autism right at their fingertips, and at no cost.”

Our own Cathy Jameson is this issue's cover girl - along with her handsome son Ronan.  once you have subscribed, (see link above) you can read Cathy's article titled Navigating the System to learn about the IEP process.

Continue reading "Autism Mom and Cover Girl! Autism File Goes Digital." »

LJ Goes, Journal Entry, July 10, 2013

EnterpriseLJ Goes, Journal Entry,  July 10, 2013

Noah has been taken off all anti-inflammatory meds due to unexplained welts and rashes all over his body. Creases of his thighs, behind his knees, his face, calves and ankles.

Noah is resisting ABA training at home. Many hits kicks and punches. Hair pulled. Shirts ripped.

Pinched Liam today to try to get him to play Spill the Beans which really means stim on the beans.

After spending 3 hours this morning scouring carpets with a comb to make sure I have gotten every last piece of clay (his PICA has returned so he is trying to eat clay and plastic) I apparently missed a golf ball sized dollop in his sister's room. Praying so hard he didn't eat any.

Tried to elope from the car 14 times, an improvement from Monday, which was 21 times.

Mom is visiting and asked me to please sit down and just chat for 5 minutes. Please. Told me about an amazing table her neighbor got for 1,100.00 that is just fantastic. The leaf comes right out, and there is a huge amazing storage box at the bottom. She's never seen anything like it.

Realize this lost time will cost me the 3 Illinois vaccine exemptions I was supposed to send off to moms who need help for their kids with autism.

Maybe tomorrow.

My beautiful daughter, who has appeared in a documentary herself and has had many opportunities to be in front of a camera, has become smitten with Emma from Kitties Mama. She is an adorable little girl who does make up tutorials, but also, her family's life is chronicled in a vlog. My daughter doesn't realize the vicarious nature of her love for this family and says not once, not twice, but 11 times: DO you think when Noah is better we will go on vacations like they do? Will we decorate like that for Christmas when Noah is better? Will we have parties and food like that when Noah is better? Look at her brothers? They all have so much fun together...maybe...when Noah is better, etc. When this then that.

Continue reading " LJ Goes, Journal Entry, July 10, 2013" »

My Two Dreams

DreamBy L.J. Goes

Dream One

A crowded hotel.  An airport?  It’s impossible to tell because the hustle and bustle, the mood of the place--it’s exactly the same.  Transient. Interesting. Modern and clean.

I look down at myself and discover I’m clad in a suit!  Vintage Chanel (please oh please)?  Maybe Anne Klein. Not sure. It’s been so long.   Realizing the clout my suit carries provokes me to stand tall as if I am about to shake the hand of a new business acquaintance. Pain shoots through my leg as I correct my posture...damn stilettos!  What?!  Are those my old school Ferragamos? I cannot believe I crammed my mom feet into these babies!
This is not my cooking all morning-going-to-therapy-to-IEP meeting-to-doctor’s appointment-to labs-to-the-post office to mail labs-to the grocery store-and do car pool outfit.

Why am I rushing?  I should be savoring this.  Order.  There is order here.  Things make sense. People going places with a purpose.  God, I remember how good it feels to get results.  Go somewhere, do something and be done with it.  Execution of plans.  Meeting deadlines.  Achieving goals. 

Why am I here?

Continue reading "My Two Dreams" »

Best of AofA: Blue Hurricane

Blue_Storm_by_neXarManaging Editor's Note: Ordinarily when we run a Best of AoA post there is some sort of update or editing required. Not on this post. The blue wave continues exactly as last year - no alarm, no sense of urgency - instead, celebrations, balloons, parties even!

By LJ Goes

Blue.  Everywhere blue.  Buildings downtown.  T-Shirts.  Toys-R-Us and every chain restaurant in you neighborhood. Everyone is Lighting It Up Blue for Autism.  "Care to donate for autism research?"  Your waitress with shiny blue salon manicured nails asks. "You know autism is just a terrible disease. Those poor kids.  You wanna help the kids, right?" She bats her blue mascaraed lashes. 

During this month, the powers that be ask us to simply be aware of autism.  Don't do anything.  Well, if you've got some cash to donate for "research", you can certainly fork that over, but don't ask us who it's going to or what we are going to do with it. You probably wouldn't understand it anyway.  Autism science is super complex mom and dad.  You've got your hands full with junior anyway.  Leave the science to the experts.  Just keep the faith that the money you give us is going to help the kids.  Probably not this generation, the previous, or the next even...but someday maybe someone will be helped.  Perhaps.  Possibly.

This, in a nutshell, is the Light It Up Blue Campaign.  Celebrities, fanfare.  Lots and lots of big corporate sponsors.  Parties.  All in the name of helping the children.

Let us have a metaphorical look at how the real autism community (i.e. activists and parents who know what happened to their kids) feel about LIUB.  

Imagine your life is thrust into shambles by a hurricane. Yes, you live in an area where hurricanes have happened before.  But never to you.  To other folks you know, sure. Never you though. Imagine, you've lost your home, your family, and you've spent the last two days pinned under the wreckage formerly known as your neighbor's garage, screaming for help (for many of us autism parents this is a very true word picture). Finally, under all that detritus, you hear muffled voices, people working toward you.  All is not lost.  Someone is here to help.  You are starved, dehydrated, and your body is broken in too many place to even begin taking inventory. The pain is unbearable. You cannot move or speak. 

"They really did a nice job with the swags over there."  

Continue reading "Best of AofA: Blue Hurricane" »

Winners! The Thinking Moms' Revolution Book.

Tmr book

Congrats to Kasey Dettinger and Jeff Belloni, you've each won a copy!

Thinking Moms’ Revolution - Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children

How do 23 moms and 1 dad give birth to the same baby?  Just ask the Thinking Moms!

The Thinking Moms’ Revolution is pleased to announce the arrival of their book Autism Beyond the Spectrum:  Inspiring True Stories from Parents Fighting to Rescue their Children. 

Autism Beyond the Spectrum is a compilation of over twenty stories of healing and hope collected by Helen Conroy and Lisa Joyce Goes.  Each chapter describes how parents are fighting to recover their children from autism and related disorders. Beginning with how they met and where they are today, the twenty-four Thinking Moms share why the support of close friends, who are also parenting kids with special needs, is so important. From their individual experiences to what they’ve learned during their journeys, read how TMR’s determination and friendships have become daily motivation for parents worldwide.

Pre-ordering of the book is still available on the Barnes and Noble, IndieBound, Amazon and The Book Depository websites.

Congratulations to the Thinking Moms.

The Thinking Moms' Revolution Book Is Here! Win a Copy.

Tmr bookThinking Moms’ Revolution - Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children

How do 23 moms and 1 dad give birth to the same baby?  Just ask the Thinking Moms!

The Thinking Moms’ Revolution is pleased to announce the arrival of their book Autism Beyond the Spectrum:  Inspiring True Stories from Parents Fighting to Rescue their Children.  We have two copies of the book to give away.  Please leave a comment below to be entered to win. 

Autism Beyond the Spectrum is a compilation of over twenty stories of healing and hope collected by Helen Conroy and Lisa Joyce Goes.  Each chapter describes how parents are fighting to recover their children from autism and related disorders. Beginning with how they met and where they are today, the twenty-four Thinking Moms share why the support of close friends, who are also parenting kids with special needs, is so important. From their individual experiences to what they’ve learned during their journeys, read how TMR’s determination and friendships have become daily motivation for parents worldwide.

Pre-ordering of the book is still available on the Barnes and Noble, IndieBound, Amazon and The Book Depository websites.

Congratulations to the Thinking Moms, and good luck to our AofA readers who enter the contest!

Update: Alex Spourdalakis

Update memo

Today, Alex and his mom, Dorothy, will be leaving Loyola hospital in Chicago, heading to an undisclosed location out of state where he will receive appropriate medical attention. Age of Autism Contributing Editor Lisa Goes offers this update from Dorothy Spourdalakis:

To all the people who cared enough to get involved:

 

Alex and I would like to thank everyone for their prayers, good thoughts and cards with beautiful drawings and best wishes. I would especially like to thank the one person who became my son Alex's silent benefactor. She is truly my son's "angel".

It is during times like this we as a family realize our full potential. We know no one will help us unless we help ourselves. The continued abuse, medical neglect, discrimination and ignorance have to stop. Vaccines have maimed too many already and there are many more to come. The CDC's latest stats confirm that. We are not going away, nor are we giving up. My son Alex is just one of millions of children and adults who no longer will be silenced.

Continue reading "Update: Alex Spourdalakis" »

Day 22 of Autism Agony at Loyola U Medical Center

Update 3/12. Alex's Mom Dorothy Spourdalakis has a care plan meeting scheduled  at the hospital - which, if she does not agree fully to the terms, will mean the removal of her son from her care and his being placed in DCFS.

AlexSick

This is Alex Spourdalakis, now 22 days at Loyola University Medical Center in Chicago, Illinois with debilitating GI pain.  Everyone in the autism community should be horrified and galvanized to action by the lack of care he has received.  Please contact the Joint Commission customer service line at:  630-792-5800. This is a governing body that accredits medical institutions. 

Politely tell them you are calling about the lack of medical care for Alex  Spourdalakis in the Loyola Healthcare system.   They need to receive as many calls as Loyola did 3 days ago.  They need to know what is happening behind the doors of the institutions they are accrediting.  

For background, read The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center  and our original post, Day 19: Chicago Hospital Locks Down Autistic Patient.

The members of AIM  and Alex's mother now fear for Alex's life as the result of medical negligence at Loyola University Medical Center.  If this was a typically developing child tests of every sort would be run to determine what is wrong.  Alex is holding his stomach and his head, IN PAIN.  Where is neurology?  Where are the gastroenterologists?  WHERE ARE THE "AUTISM SPECIALISTS"? 

Continue reading "Day 22 of Autism Agony at Loyola U Medical Center " »

The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center

JeannaandAlex


By Lisa Goes

On Sunday morning, Jeanna Reed of AIM (Autism is Medical) and I visited Dorothy and Alex Spourdalakis, who are now on their 21st day in the Loyola Healthcare System.  (From left, Jenna, Godmother Agatha, Alex, Lisa).

The restraints have been removed and replaced with a nameless security guard dressed in scrubs and a charge nurse by the name of "Debbie" who wore no identification. They sit in a dark corner of Alex's room beside the door, in silence, until he emotes.  

"Don't spit Alex!  Don't hit Alex!", the guard barks like clockwork as Alex rises from his bed and lumbers toward him.  

The phone and call light have been removed from Alex's room as both were considered "safety concerns."  Dorothy must now leave the room to make a call, leaving Alex unattended. 

While the security guard remained a constant, another nurse we could not identify by badge entered and left.   A physician who referred to himself as "the hospitalist" and a colleague came in to examine Alex.  

By that time, he'd awakened and was moving about the room, grabbing food and attempting to speak.  While the staff would not allow a phone or call light, a set of silverware, knife included, was present on a meal tray.  

With an air of affability completely inappropriate for the occasion, the colleague smiled at Alex and told him he was going to examine him.  With little protest and a few pulled chin hairs, he was able to briefly listen to Alex's lungs and midsection.

As the mother of a child with autism, I was wondering how Alex was keeping it together. As he rocked naked on a  bed amidst a room full of strangers, he presented only sensory problems, which he self-regulated by chewing on a strip of sheet from his bed.   Despite Loyola's advertisement of medical professionals that are "always in reach," there was nary an autism specialist among the group. No therapists. NO BCBAs to educate the staff handling him.  No occupational therapy. Not even a chewy tube to help facilitate his need to bite. 

One of the nameless nurses questioned Dorothy's judgment in allowing Alex to chew on a torn piece of sheet. "I'm just concerned he'll choke" she said.   With an educational and articulate tone of authority, Dorothy explained how the sheet was soothing his sensory needs. Instead of justifying his behavior, or lashing out at her ignorance, Dorothy simply educated her.  When Dorothy speaks, though, most staffers gaze at the floor and roll their eyes. 

Continue reading "The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center" »

Day 19: Chicago Hospital Locks Down Autistic Patient

Alex1UPDATE 3/9:  Fox Chicago ran a story on this situation and Philly picked up this story, read and watch video here.

Managing Editor's Note:  Loyola Medicine in Chicago, IL Act now! has as its tagline, "We also treat the human spirit." But they forgot the ending, "..like a dog."

Email Ann Dillon in Media Relations with the link to this post.  Tweet them our link @LoyolaHealth.   Share our link on their Loyola Health FB page.

LoyolaMedicine.org

Vice President and CNE, Paula Hindel 708-216-3802
CEO Larry M Goldberg  708-216-3215

By Lisa Goes

Patient Safety Awareness Week, Spotlighting Loyola University Medical Center: A Parent’s Perspective

“I need to tell you Alex’s story.” Dorothy Spourdalakis, Alex’s mom spoke professionally with a deliberateness I was not expecting—considering she has been by Alex’s bedside awaiting proper medical care for his gastrointestinal symptoms, for 19 days.

19 days. 456 hours. 27,360 minutes. 1,641,600 seconds.

This is Alex. 

The irony of this week marking The National Patient Safety Foundation’s “Patient Safety Awareness Week” is not lost on Dorothy. According to her, at 14 years of age, Alex has a diagnosis of severe autism and cognitive impairment. He is non-verbal. In October of 2012, Alex began to suffer neurological events that prevented a healthy sleep cycle. He was awake for many hours at a time. Agitation and aggression ensued as a result of sleep deprivation. During this time, symptoms and behaviors that were indicative of severe gastrointestinal distress developed as well.  A cycle of constipation, diarrhea and formed bowel movements surfaced and became a chronic problem. On February 16th at 5:00 am, with the assistance of police and paramedics, Dorothy took her inconsolable and highly-distressed non-verbal child to Gottlieb Hospital in Melrose Park, Illinois.

Because of Alex’s physical aggression, he was placed in locked restraints. At that time, Dorothy did not know the ER would be their home for the next several days, as Alex lay naked, in locked restraints, suffering bouts of violent vomiting, severe constipation and diarrhea. Neither she nor Alex bathed for the next 13 days while hospital staff and administrators attempted to devise a plan to care for Alex. “He was given Colace for his constipation and sometimes it would take security staff and nurses more than 15 minutes to arrive to help unshackle him so he could use the bathroom,” Dorothy explained. “Alex would scream as best he could when he knew he was going to have a vomiting episode, but security took several minutes to respond so Alex would lay in his own vomit, waiting to be released by a representative of security. He would be wiped down and returned to the same restraints.”

Autism Is Medical (AIM), a support group that helps parents identify the underlying medical issues
associated with the label of autism, was contacted on Sunday, February 24th.  They were enrolled to help the staff at Gottlieb understand Alex’s complex medical profile. According to one of the AIM representatives,  “Clearly, what they are doing isn’t working.” The AIM advocates,(all mothers to children fully recovered from iatrogenic autism), went on to say,  “Currently, this child is being treated with Lorezepam, Oxezepam, Benzatropine, Zyprexa and Ativan.  These drugs do nothing to address the intense gastrointestinal issues he is experiencing, nor do they alleviate his pain.”  Dorothy explained that Alex remains in a highly-agitated state. He was also prescribed Depakote, to which he had an adverse reaction (elevated lipase). In addition to these issues, Alex’s mom explained he has many allergies. Both physicians at Gottlieb and Loyola told her that IgG and IgE food sensitivies were invalid. Dorothy was told by the attending physician to give her son milk at Loyola, not in the ER. When a possible reaction occurred she was told the bed caused his contact dermatitis.

AlexRashes2

Continue reading "Day 19: Chicago Hospital Locks Down Autistic Patient" »

Childhood 2012: All I Need To Know I Learned in Special Ed Kindergarten

Retro teacherBy Lisa Goes

In my former life I held various careers in sales, recruiting and management.  I attended seminars and read books about personal and professional success. This ever popular guideline by Robert Fulghum was long my mantra.

ALL I REALLY NEED TO KNOW I LEARNED IN KINDERGARTEN

All I really need to know about how to live and what to do and how to be I learned in kindergarten. Wisdom was not at the top of the graduate school mountain, but there in the sand pile at school.

These are the things I learned:

  • Share everything.
  • Play fair.
  • Don't hit people.
  • Put things back where you found them.
  • Clean up your own mess.
  • Don't take things that aren't yours.
  • Say you're sorry when you hurt somebody.
  • Wash your hands before you eat.
  • Flush.
  • Warm cookies and cold milk are good for you.
  • Live a balanced life - learn some and think some and draw and paint and sing and dance and play and work every day some.
  • Take a nap every afternoon.
  • When you go out in the world, watch out for traffic, hold hands and stick together.
  • Be aware of wonder. Remember the little seed in the Styrofoam cup: the roots go down and the plant goes up and nobody really knows how or why, but we are all like that.
  • Goldfish and hamsters and white mice and even the little seed in the Styrofoam cup - they all die. So do we.
  • And then remember the Dick-and-Jane books and the first word you learned - the biggest word of all - LOOK.

Everything you need to know is in there somewhere. The Golden Rule and love and basic sanitation. Ecology and politics and equality and sane living.

Take any one of those items and extrapolate it into sophisticated adult terms and apply it to your family life or your work or government or your world and it holds true and clear and firm. Think what a better world it would be if we all - the whole world - had cookies and milk at about 3 o'clock in the afternoon and then lay down with our blankies for a nap. Or if all governments had as a basic policy to always put things back where they found them and to clean up their own mess.

Here is my adaptation, written from the perspective of a contemporary child in 2012. The year chronic illness, autism, adhd, auto-inflammatory illness and obesity have claimed over 50% of our children.  The year of the Congressional Hearings on the Federal Response to Autism.  The year congress knew, and yet…still…STILL…did…NOTHING. Time is ticking.  2013 is upon us.  

ALL I EVER REALLY NEEDED TO KNOW I TRIED REALLY HARD TO EMULATE FROM THE APPROPRIATE BEHAVIORS THAT WERE MODELED FOR ME BY MY THERAPISTS IN ADAPTIVE INCLUSION KINDERGARTEN CLASS.

All I really need to know about how to live and what to do and how to be I am trying to learn in kindergarten. Wisdom is not at the top of the specialized adaptive special needs graduate school mountain where over 30% of the population will attend school in the next two decades, but rather there in the arsenic-laden sand pile at school; where my mother no longer allows me to play (she says I get plenty of arsenic in my chicken and juice).

These are the things I am trying so hard to learn:

Continue reading "Childhood 2012: All I Need To Know I Learned in Special Ed Kindergarten" »

We Can't Unfriend our Lives

Unfriend

By LJ Goes

Welcome Friday:

Noah up since about 1:00 a.m. Just tried to give him his morning medicine. Screamed, threw it. Said, "no mom, please!" Which, is an extraordinary statement and a reason to celebrate. He communicated his feelings perfectly. I am shocked he still has a voice when he's been singing and screaming all night long.

Get him dressed, make his lunch, include a note letting his teachers know he will need a nap.

Open email: " LJ, Please pray for my daughter ***. She is having exploratory surgery at 9:00. Have been at hospital since Sunday night with her in terrible pain right where here enterra (gastric stimulator) is. Please pray they see what is wrong and it's an easy fix.

**************
This 19 year old had to have this device implanted after she got the Gardasil shot. Her stomach and intestines quit functioning immediately after it was administered. But of course, her intestines just spontaneously quit working. No correlation because correlation does not equal causation. Nopers. Just like people who get shot in the head spontaneously bleed out and die. Just because they have a bullet in their cranium does not mean a gun was involved. That bullet could have gotten there any number of ways.

**************

NT son wakes up asks me if wasp-esss-ez die when they sting you. Asks me why we die and lets me know he wants to have a picnic today like they do on Jake and the Pirates.

Get a message from a friend. "Please do not take this personally but I really can't follow you on FB anymore. I cannot take what you write. It's too horrible and the daily reminder of what you guys are going through is taking a toll on me. Sorry. Love you guys and hope you are not mad. Kids are so cute though."

Continue reading "We Can't Unfriend our Lives" »

The Truth Behind The Lies Play By Play from IACC Meeting

LiesBy LJ Goes

“Just  more BS…some guy says good luck…no way Congress is giving more money…”

“What now? I’m dying here.”

“…Geri (Dawson) now.  Liked her intro statements”

This is my friend, and fellow Co-Founder of The Thinking Moms’ Revolution, Kim Spencer and me, exchanging texts on Tuesday morning, July 10th, 2012.  She was giving me the play by play from the live stream feed of the IACC proceedings taking place in Washington, D.C. while my husband, our two sons, Liam and Noah, and I languished in yet another hospital waiting room in yet another state, awaiting time with a team of the country’s top research physicians. While most families make their yearly pilgrimage to Disney or take a road trip out west, we pile our kids into the car and head to Children’s hospitals. Our son Noah is quite ill and suffers from a misdiagnosis of autism.   Since the day he received his label we have been unable to get him sufficient medical care for his bowel disease, mitochondrial dysfunction,  autoimmune illness and central nervous system damage—all very common conditions in most children with “autism” that go undetected, untreated and ignored because of their iatrogenic nature.   

The IACC, about which we were texting, is the Interagency Autism Coordinating Committee.  They are supposed to be the best and brightest of our country who’ve come together to resolve an inconvenient and expensive  problem sweeping the nation.   The CDC recently reported that 1 in 88 kids have autism.  Many of the folks who brought that statistic to the public have some form of interaction or involvement with the IACC.  Sadly, they did not mention they’ve not bothered counting kids under twelve.  So when they say 1 in 88, they mean tweens and up…not actual children.   So, so far, we know they do not share humanity’s common definition of the word “children” and they do not know how to count. Yet somehow, they have been charged with ending the autism epidemic.   As you may suspect, we are not off to a good start.

Kim:  More BS…

Me:  What are they saying?! 

Kim:  (Department of Health and Human Services Head) Kathleen (Sebelius) saying she is not Sebelius pink jacket personally affected by autism?  Saying…everyone has done a great  job…

I was positioning my fingers to hammer out, “WT..."   when we finally got called back.  Our first two doctors were outstanding.  The metabolic geneticist was an absolute gem.  I make sure physicians read Noah’s labs in front of me because I have learned from experience they will be thrown into a pile and ignored otherwise.   He read them, commented and (special bonus!) asked questions.  He asked me if I saw a decline in Noah’s condition after vaccination and nodded sympathetically when I answered.  At the end of the day he is still a mainstream physician who cannot confirm or deny the medical reality of autism.  He’s just a cog in the wheel, helping the kids who meet certain criteria approved of by insurance and pharmaceutical companies, alike.  Lesser affected kids (whose parents were smart enough to stop vaccinating at the onset of symptoms) have probably greatly benefited from his knowledge.  He recommended a battery of tests and concluded our time together by asking us if we’ve ever suffered migraines.  “Well, for Noah, imagine that migraine is on-going and its taking place all over his body.”   While I found his empathy refreshing, it’s not what I need.  I need help.  I need to stop his pain. I am not in need of new ways to describe it. I need competent, inquisitive, effective, FEARLESS medical expertise.  In other words, I need doctors who are not pharma’s b*tches. Let’s get the tests done and get on it.  I. NEED. ANSWERS. NOW!  MY CHILD IS SUFFERING.

Next doctor please.

Noah’s anxiety was getting worse, his screaming and slaps, while constant, had grown particularly disturbing to those in the office and waiting room. The nursing staff took pity on us.  They brought us toys which Noah threw back at them.  They offered GMO juice, crackers and cookies which I threw back at them. 

Doctor number 2, the pediatric neurologist and main attraction, arrived.  He took a detailed history and had mostly bad news to offer.  Many more tests were required, many we will have to pay for out of pocket, and if it these tests  do confirm he suffers the particular type of neurological damage we all suspect…the  recommended treatment often makes children more aggressive. I inquired about Noah’s ongoing bowel issues and he asked us if we could stay and see their resident gastroenterologist.  While he had a reputation for treating bowel disease “conservatively” he thought it was worth us visiting with him. We agreed.  After all, we’d come all this way and they are specialists here. The best of the best…

Continue reading "The Truth Behind The Lies Play By Play from IACC Meeting" »

The Thinking Moms' Declaration of Independence from Medical Tyranny

DeclarationThe Thinking Moms' Declaration of Independence from Medical Tyranny, Institutional Corruption, and Government Apathy

When in the course of human healthcare it becomes necessary for one people to dissolve the political bands which have connected them with another and to assume among the powers of the earth, the separate and equal station to which the Laws of Science entitle them, a decent respect to the opinions of educated parents requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all children are created equal, that they are endowed by virtue of their birth certain unalienable Rights, that among these are the right to a healthy life free from the tyranny of untested preventative medicine and a life free from chronic inflammatory illness caused by an unaffected and apathetic pharmaceutical oligarchy that receives government endorsement and protection.  To secure these rights, Governments and Institutions are created deriving their just powers from THE CONSENT OF THE GOVERNED. Whenever any form of Government becomes destructive of these ends, it is THE RIGHT OF THE PEOPLE to alter or to abolish it, and to institute a new Government, laying it’s foundation on such principles and organizing it’s power in such form, as to them shall seem most likely to preserve the Safety and Health of their children.   

Prudence, indeed, will dictate that the Pharmaceutical Industry, Medical Institutions, and the Government long established should not be changed for light and transient causes; BUT WHEN LONG TRAINS OF ABUSES AND USURPATIONS, pursuing invariably the same object evinces a design to reduce these children under absolute Medical Despotism, it is the parents’ right, it is their duty, to throw off such a government and it’s corrupt and unholy counterparts, and to provide new guards for the future health and well being of their children. Such has been the patient sufferance from these parents, The Thinking Moms’ Revolution, and such is now the necessity which constrains them to alter their former Systems of Government, Healthcare, and Educational systems.  The history of the present authorities is one of repeated injuries and usurpations, all having in direct object the establishment of an absolute tyranny over all families held to the rigorous and untested pseudo-scientific assertions of the CDC and the most powerful and wealthiest lobby in Washington, the Pharmaceutical Industry.

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At the Park with Ahmed

PlaygroundManaging Editor's Note: Thank you to our friends at The Thinking Moms Revolution for sharing this post with us. Add their site to your favorites. 

By L.J. Goes

This week my children were on spring break.  As any autism parent will tell you, this is an incredibly stressful time for the entire family.  Routines are disrupted, children grow restless.  Time that should be considered a gift with family becomes a challenge of particularly terrifying proportions.  Especially when you have a child who is big on spinning glasses, climbing on  countertops, disrobing and fleeing his home.  Hours that were previously structured down to the minute now present an endless sea of potentially dangerous moments for the child with autism, as well as his family.  

Sound absurd?  Think I'm exaggerating? I don't make the rules, friend. I just play by them.

On this particular spring break day my husband Dave and I were determined to get some things done around the house.  We had stacks of dirty dishes to clean, laundry to fold and an organic garden to plant.  Plus, we had to make our weekly pilgrimage to Whole Foods on the west side to drop our regular 390.00 a week on groceries. Yes, I said 390.00 a week. Ergo, the pressing need for the garden. We decided to divide and conquer.  Dave hoped our son with autism, Noah, would be enthused by the idea of planting. While he struggled to get him into his overalls I loaded our neurotypical kids, Mads and Liam, into the car and headed out with the promise of a visit to the park afterward.

As we pulled alongside their favorite tree lined park Liam bounced a brand new shiny yellow soccer ball on his lap.  Instantly, he noticed a child playing and said, "I am going to make friends with that boy!" They hurried out of the car and I lagged behind fiddling with my phone, checking emails and voice messages.  I looked up to find Liam chasing the little boy.  While mainstream medicine will have you believe autism moms are most often of the Bettleheim or helicopter variety, my husband and friends will confirm for you that I am rather laid back.  Children’s affairs are their own in my company, unless someone is getting hurt.

"Wanna play soccer?" He said, as he threw the ball at the little boy's feet.  They faced each other now, barely a yard separating them. The adorable little black haired boy had no reaction to the heavy plastic that landed squarely between his feet.  Instead he stared through prism glasses at something.  The sky?  I couldn’t really tell.

 "Hi! I’m Liam!" My little man said as he knelt to retrieve the ball. 

"Ahmed! Say hi! Say hi!" A beautiful woman with a nervous smile rounded the corner.  Ahmed paid no attention to her or Liam.  Instead, he walked over to a tree in silence and plopped down facing the trunk.  Then he got up and circled it.

"He's shy."  She said. 

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A Hurricane of Blue

Blue_Storm_by_neXarBy LJ Goes

Blue.  Everywhere blue.  Buildings downtown.  T-Shirts.  Toys-R-Us and every chain restaurant in you neighborhood. Everyone is Lighting It Up Blue for Autism.  "Care to donate for autism research?"  Your waitress with shiny blue salon manicured nails asks. "You know autism is just a terrible disease. Those poor kids.  You wanna help the kids, right?" She bats her blue mascaraed lashes. 

During this month, the powers that be ask us to simply be aware of autism.  Don't do anything.  Well, if you've got some cash to donate for "research", you can certainly fork that over, but don't ask us who it's going to or what we are going to do with it. You probably wouldn't understand it anyway.  Autism science is super complex mom and dad.  You've got your hands full with junior anyway.  Leave the science to the experts.  Just keep the faith that the money you give us is going to help the kids.  Probably not this generation, the previous, or the next even...but someday maybe someone will be helped.  Perhaps.  Possibly.

This, in a nutshell, is the Light It Up Blue Campaign.  Celebrities, fanfare.  Lots and lots of big corporate sponsors.  Parties.  All in the name of helping the children.

Let us have a metaphorical look at how the real autism community (i.e. activists and parents who know what happened to their kids) feel about LIUB.  

Imagine your life is thrust into shambles by a hurricane. Yes, you live in an area where hurricanes have happened before.  But never to you.  To other folks you know, sure. Never you though. Imagine, you've lost your home, your family, and you've spent the last two days pinned under the wreckage formerly known as your neighbor's garage, screaming for help (for many of us autism parents this is a very true word picture). Finally, under all that detritus, you hear muffled voices, people working toward you.  All is not lost.  Someone is here to help.  You are starved, dehydrated, and your body is broken in too many place to even begin taking inventory. The pain is unbearable. You cannot move or speak. 

"They really did a nice job with the swags over there."  

"Yeah, so vibrant.  I love the way the blue shimmers when the light hits it just the right way!" You hear someone respond to the comment.  

"I heard there's going to be a champagne toast at the big brunch today to celebrate all our hard work.  I guess even the White House is going to  put up blue light bulbs or something?  It's a really big deal."

You must be hallucinating.  Either that or you are crossing over.  Is one of these jokers your spirit guide or is there seriously a party going on out there?

Finally several  slabs of wet, damaged siding give way, and you see a glimpse of the blue the voices are talking about. Blankets of  decadent azure fabric cover the carnage.  Homes literally turned upside down are swathed in yards of the stuff.  Are all those swags made of blue velvet? Whatever it is, it's everywhere.  Floating on the snake, bile and bacteria infested waters.  Hanging from the tops of damaged trees.  Some of it appears to be covering bodies. A large tent made of the stuff has a sign that explains everything, "Celebrate Hurricane Awareness Month!" 

A worker wearing a cotton version of the same blue lunges toward you.  He seems downright affable. "We got another one here!" The first voice you heard belongs to him. His colleague yells back, "Alive?"  

"Not sure."  He responds.  He leans in to check your vitals when an impressive looking person catches his eye. 

"Hey Mr. Pharma!  Good to see you!" he yells to the very important looking man who is wearing the same blue shirt, only his is obscured under a silk Tom Ford suit.  You can tell it's custom.  "Nice work on the buttons! You know the message really reaches the people!"  Mr. Pharma squints and nods in the workers direction.  He has a clipboard an iPhone and an entourage.  They too are clad in blue tops with suit coats and executive bottoms. Mr. Pharma waves but doesn't bother looking at the worker. He's getting ready to motivate his people. "Now, this charity gave us $500,000, he says, pointing to a name on his clipboard.  That's great, but I know you guys can do better.  We are saving lives here.  Children. Families.  It's about the people and you need to remember that.  I only put my name on things I can really get behind. So, when you think you can't possibly ask for another dime look around you.  Look at all these signs, swags, t-shirts and buttons.  Blue is the color of natural disaster.  It's like the whole world thinks, blue - hurricane! You good people, you did this.  Now, keep it up.  I am working on some very important research with some bigwigs that will help us identify why so many people died from this particular hurricane.  It is very complex, super-science-y, but I will dumb it down for you. My investor, I mean, scientist friends and I are trying to ascertain if the people who died directly as a result of this hurricane had a genetic predisposition to death by natural disaster.  If they did (which we all believe wholeheartedly our research will reveal) how do we identify the Natural Disaster Gene?  This is going to be huge guys. Everybody who's anybody wants in on this research!  We need millions. So get to work!!"  

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I Know Why the Caged Bird Screams

Bird_cage512232By LJ Goes

It's a scream like no other.  You know something is wrong. You search for the cause.  No teeth coming in, no picky fabric irritating her skin, nothing to be afraid of.  In fact you say that over and over again. "It's okay peanut, it's okay, there's nothing to be afraid of." Your friends and family comfort you.  "He's probably just colicky.  Gassy."  You pat and pat and pat that tiny little back. You coo and bounce, gently.  Nothing seems to stop the screaming. 

The screams eventually haunt your sleep. They chip away at your sense of self. Your family's sense of safety dissipates. You question your sanity.

During a presentation at a local school my friend (Blaze) heard these screams again - thanks to all her hard work, those days are long gone for her and her son P.  The memories came flooding back.  She barely made it to the parking lot in time to vomit. 

While out for a run, my friend  (Mama Mac) recalls encountering a mom with her screaming baby and shouting "Don't vaccinate that baby!" as she jogged passed them. 

It's that powerful - that terrifying - for those of us who know what caused it. 

"Mrs. Goes, today you will get 4 kicks to the stomach.  Looks like just below the ribs to the right.  3 blows to the left cheek.  Only 2 bites on your upper arms.  17 slaps in undetermined locations.  One bloodied lip. You'll be fine, but the iPad screen...looks like you're out another 250.00." 

"Good Morning Mrs. Goes.  Today you will receive two upper cuts to your lower right jaw.  Four head butts.  9 slaps to your calves and thighs.  One glass Pellegrino water bottle hurled at your face.  You'll be fine, but cleaning up the glass will be time consuming.  In the meantime, clean folded laundry will be thrown, your youngest will be slapped, and the Epsom salt will be tossed around your bathroom until the tile is no longer visible.  Only one direct hit to your stomach.  6 bites."

I'd accept either daily scenario readily and repeatedly if it meant an end to the screaming.  

The screaming puts the burden on me.  Is it the mito?  The yeast? Did he get some food he's not supposed to have? His eyes are dilated, he's tearing at his stomach and ripping off his clothes. Is it the PANDAS? Which one of the many systems that don't work is presently causing him the most discomfort? It's up to me to figure it out. It's up to me to take away the pain. I'm mom.  

The hitting, the violence...I'm just the recipient in that deal.  No responsibility on my end.  Plus, I've gotten used to it.  I haven't gotten used to the screaming. 

Continue reading "I Know Why the Caged Bird Screams" »

My Mood Ring: The Joy of Being Spared a Mediocre Life

Caution to WindBy LJ Goes

Recently my daughter Mads and I headed off to the neighborhood mani pedi place for a day Fancy Nancy would have considered the ultimate in posh (that’s a fancy word for ritzy!). 

The Daddy Daughter Dance sponsored by our local high school was on the calendar and Mads wanted to look divine. From my seat in the salon I observed her budding confidence.  The nail artist painstakingly created a perfect white flower on her bright neon orange nail.  “Thank you!  Wow, that is amazing!”  She preened, smiling the widest most brilliant smile, following her amazement with infectious giggles.  I wished with all my supernatural maternal power that the joyful feeling of beholding her in that moment could last forever.

Meanwhile, at home, our son, Noah, who was misdiagnosed with autism, worked on toileting with one of his caregivers.  He hates toileting.  It annoys him and since he is often hard pressed to find the language to express his distain, he often acts out with slaps and screams.  We’ve seen great gains with his most recent treatment protocol, but, as anticipated by his physician he’s recently hit a period of regression.  I savored my time with Mads like a prison inmate appreciates time in the yard. 

Hours later I was working her up-do like a pro, putting hair pins in all the right places and spraying strategically.  Her little brother Liam kept grabbing the hair accessories and clipping them to the new Harley Davidson sweatshirt his father had purchased for him today at the Motorcycle of All Motorcycles stores.  “I want a fast bike mom!  The big one!”  Greeaaat, I thought.  A little Dave.  Handsome, super smart, and DANGEROUS!  “No you don’t.”   I said.  He walked out of the room with his head held high chanting, “yes I dooo-oooo!”  I heard him relay the exchange to my husband who yelled up to me that I shouldn’t squelch our youngest son’s free spirit.  Niiice.

Around 5:30 my in-laws arrived for pictures and I hit the wall. Anxious, angry, sad and overwhelmed would accurately describe me between the hours of 3:00 and 6:00 on any given day.  My Mood Ring, Noah, demonstratively began to project how I felt to our guests and anyone within earshot of our house.  He acted out, whining, screaming and slapping.   My mom-in-law, sensing the tension, offered to take Liam for a special trip to her house so I could manage his behavior (and my own) without distraction.  Thank God for the village.

Moments later the door shut behind them all - just me and my Mood Ring for the remainder of the evening.  What to do first?  Five loads of laundry?  The dishes?  The disgusting…and I mean—DISGUSTING floors?  Tackle the filthy bathrooms?   I have an article due next week, papers to read and sign for our non-profit, phone calls to return, emails in need of attention that have been sitting in my inbox for weeks;  IEP reports to review and 2 new protocols to research.  Playdate requests.  RSVP’s for children’s parties to send out.  Doctors to track down.  Test results to interpret. That bloody blinking light on the home phone.  You have 9 new messages, 42 saved…

What to do, what to do…

Defeated, I headed for the pantry. Chocolate covered almonds?  Organic margarita?  Nah, too festive for my state of overwhelm.  Plus, my Mood Ring was not interested in my attempts to self-medicate.  He slammed the pantry door and grabbed me by the shirt.  “No! No! Go!”

“What do you want?” I asked, not even hiding my annoyance.  (Bad mommy)  Today Mads got the best of me , kid.  We just gotta get through the night, see?  “Use your words buddy, tell me what you want?”

“UPSTAIRS!”  Okay, well, he used his words.  Loud and clear.  That meant he wanted to go jump on the counters in our master bath and lick the mirrors.  Not tonight.  I’m beat.  My back hurts. No. Only, I can’t say no, because that triggers a meltdown.

“Bud, we are going to stay down here, where’s your iPad?” 

“No, no, no, no, no.”  He’s pulling me now and I am already half way up the steps.  Should have made that margarita when I had a chance.

We arrived upstairs and I was immediately distracted by the state of my closet.  Clothes, clean and dirty comingled on the floor.  Gross. I bent over to sort.

“No, no, no, no, no!

“Okay, Noah, what?” 

“SHIRT OFF.”  Oh, a bath.  It’s not quite time yet, but, fine. I helped him take his shirt off. 

“No, no, no, no, no!”

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A Keynesian Look at Autism

KeynesBy L.J. Goes

"Von Mises.   Now he was a true Austrian economist." 

Many an unsuspecting dinner guest have been treated to an impromptu lecture about economics by my beloved husband, Dave.  Along with fast cars, Harleys and the White Sox, economics tops the list of my husband's most ardent passions. Let's just say when he gets started on Keynesian economics - the theory that government intervention in the free market is necessary to stimulate economic growth - I start floating around the table filling everyone's wine glass to the brim.  He detests, abhors, and generally reviles this school of thought because of it's lack of transparency and it's proliferation of the false notion that the government knows what is best for the people. Of course, it could work, if the government were actually comprised of the people.  It is not.  It is comprised of exceedingly wealthy bureaucrats, special interests and corporations.  People as individuals, do not exist within the constructs of our current government. Keynesian economics caused the housing crisis.  It causes stagflation, inflation, and every other -ation you can think of. For instance, vaccin-ation.  The survival of the corporate entity is KEY (KEY-nesian) in order to support Keynesian principles. The survival of the individual (the citizen), is irrelevant. 

While we never hear the phrase Keynesian economics bandied about in the mainstream media (except for Bloomberg) it is the philosophy that keeps Washington operational. False stimulation of the market is the solitary premise upon which all our current policies are formed.  Everything from repairing roads that don't need fixing (creating jobs) to fighting wars on foreign soil (wars that no one invited us to partake in, in the first place), has it's foundation and justification in Keynesian thought.  

False stimulation of the market has given us insurmountable national debt, rampant poverty, joblessness (unless you want to move overseas), unprecedented foreclosure rates, subsidized farms, excessive waste, fake food and untested preventative medicine. 

False stimulation of the immune system gives us chronic illness. Chronic illness is KEY for corporate profits. Chronic illness is spectacularly lucrative for the GPD (government/pharma/doctor) Alliance. They are uber-fans of Keynesian theory.  False stimulation of the immune system also gives us the propagandized notion of a protected "herd".  This is a wildly publicized and successfully promoted but false notion. In reality the live viruses we've been injecting into our toddlers can shed and infect other children and adults with weakened immune systems. Ergo the oft reported outbreaks of vaccine preventable illness in vaccinated populations. That's right, GPD, the retro hippie parents that live on the corner of town who give talks about raw milk at the local library cannot be blamed for every single pertussis outbreak in the continental U.S. This theoretical herd protection goes by another name.  False comfort.  Notice the common theme here? 

False, false, false, false false.  

We're tricking the economy.

We're tricking the immune system. 

Continue reading "A Keynesian Look at Autism" »

Autism: The Disease of A Thousand Cuts

Daumen3By Lisa Goes

This was a tragic week for children.  The poor families in LeRoy keep getting the same routine from their local doctors and health department.   They simply have stress and that stress has caused their "conversion disorder."   Now enough of these shenanigans.  Different doctors appear on the news to deflect questions.  They say nothing.  The families grow more outraged and the health department denies they have anything to be upset about.  Tics and seizures just happen.  Tics and seizures just happen.
 
A representative of the 7 year old girl who died last month following a flu shot contacted me
 Beyond the sadness of that event the representative explained that she hadn't contacted me sooner because her own son with a vaccine injury, now in his 20's, was quite ill as well.  He is nonverbal so they were guessing he had a bladder infection based on his behavior.  Doctors kept saying nothing was wrong.  Finally he was rushed to emergency where it was determined he had a collapsed lung. 
 
My friend Marcella Piper-Terry is working on a new billboard for Timmy.  You can meet Timmy and read about him HERE.

Timmy is failing to thrive after a reaction to his hepatitis B shot, which he received as a newborn.  Hepatitis B is primarily transmitted sexually. 
 
Earlier this week, my friend Cat Jameson wrote a phenomenal piece for Age of Autism about the vaccine controversy entitled "A World of Hurt".  She does a marvelous job of explaining the reality of this slanted debate.  Essentially we present sound non-pharma funded science over and over and over again.  Instead of reading it, our government and those in power tell us we are letting our children play in traffic.  Of course,  real scientists know the two scenarios have nothing to do with one another, but, we have no real scientists in Washington.  These "scientists" turned politicians and lobbyists, half-heartedly skim volumes and volumes of thoughtful research (hoping for pictures?) then look the presenter square in the eye and say, "I know you are but what am I?"  It would be comical I guess, if babies were not dying every single day, medical examiners were not looking away, and health departments didn't swoop down and give parents half answers like, "SIDS", "Cause Unknown," and "Encephalopathy, no known cause."  Oh and, this had nothing to do with their well baby visit the day before yesterday Mr. and Mrs. Smith.
 
For the babies who live,  like my son Noah, they navigate the world everyday with a thousand cuts.  The PANDAS that ravages his brain. The mitochondrial dysfunction brought on by vaccination.  The bowel disease.  The food sensitivities.  The sensitivities to light, sound, touch, fabric, play-doh, plastic, to...the world.  The viruses.  The chronic illness.  The inflammation. The pain.  The vision issues.  The central nervous system damage.  The apraxia.  The metabolic and methylation failure.  It all works together.  One cut on his cheek, one on his backside, his toe, his arm, his knee, his elbow...he could quite feasibly bleed to death because it is so much more convenient to label kids like him with "autism" instead of investigating the multi-system illnesses that ravage his body.  It's just easier this way, for everybody. Especially pharma and the government. 
 
When parents start piecing all this together it is going to be a revolution of biblical proportions.  But honestly, what parent is going to have the time,  money, patience, professional acumen and stamina to keep up with this when they get no support from the mainstream medical community?  No worries, pharma comforts itself.  Parents will try, they will...but soon the dark reality of autism with set in.  The sleepless nights.  The violence.  The constant bowel disease, the excrement on every surface.  The constant harm the child inflicts upon himself and everyone else.  Even the most dedicated parents will lose faith.  Then they will do what pharma says, get their children therapy, set them up with a lifetime psyche-med cocktails and eventually put them in institutions where they will very very slowly be medically lobotomized.  Remember the pharma mantra:  We don't want them dead and we don't want them healthy!  A slow lingering death is integral to maximize profits.
 
I read a truly horrific article yesterday, written by a dispassionate UK journalist making her case for "testing" for autism in the womb because as the title of her article says, "Why Can't We Face the Truth? Having a autistic child wrecks your life." 

Continue reading "Autism: The Disease of A Thousand Cuts" »

The Inflammation Highway: aka Autism

  Tummy-ache-abdominal-pain-t13513By Lisa Goes

"The one thing about my husband and I...we laugh...A lot. We find a way. We really do. Poop filled sleepless nights, injuries, missed appointments, clutter everywhere, missing paperwork...sometimes all you can do is laugh. But today, looking at the dark circles we've seen so many times under our children's eyes, seeing the suffering, the real genuine human suffering that we have worked for three years to alleviate...to see it reach these depths...there is no laughing today. There is sadness. Even the fight is gone. I should be sleeping, but I have to read up on one of our new remedies. Maybe this will be the one that touches his immune damage and regulates him? Maybe. Maybe, it will work for him like it has for THOUSANDS of other children. Maybe. I can't sleep when this could be it and I could be calling the next doctor tomorrow and we could have one less day of this. Plus, I already have an appointment to see a doctor tomorrow and I will need him to know that I know what I'm talking about. If there is one thing you learn as an autism parent it is that YOU MUST KNOW WHAT YOU ARE TALKING ABOUT WITH DOCTORS. You must learn to speak their language. If you don't you will get dismissed. Must read, now.

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Lisa Goes, Autism Mom, Writes a Letter to Santa

SantaBy LJ Goes

Dear Santa, 

I can't say I've been a good girl this year.  Let's just say my house has been cleaner.  I can't even remember what the flooring looks like in that room with those big laundering vessels.  I've been horrid about returning phone calls. Unless one has a Dr. or Pr. in front of their name and an RN, MD, and MS after, they may wait weeks for a returned call. I forget about play dates for my neurotypical kids.  I've abandoned polite society, so it seems.  Time previously spent executing thank yous on expensive stationary is now spent on food preparation.  Turns out my son Noah is sensitive to just about everything one can buy at the grocery store. Yes, even rice. Your standard cracker. Juice box.  I have to make everything he ingests from scratch with my own two hands.  Huge learning curve for someone who considers Starbucks a food group.  Kind friends bestowing birthday gifts upon my children are lucky to receive a thank you text.  I've let my daughter down.  My mother spent countless hours teaching me the merits of fine manners.  How to place a napkin on my lap, what fork to use for each course, the purpose of a finger bowl, locking ankles.  Mads can dissect a nutrition label like a home economics teacher but not many 7 year olds are really into that.  Many parents of other 7 year olds find it downright annoying. They don't like when someone else's know-it-all kid tells them about the dangers of high fructose corn syrup (especially if you are trying to conceive!). As you know our baby Liam is now 3. I don't really know him. I know he likes Mario and Thomas the Train, but for the most part, he's a stranger.  I don't have much time for him. I yell more than I should.  At the wrong people.  Have I mentioned my husband?  When he's not working to put a roof over our heads and pay for the extra $2,000 a month we need to pay for autism "basics", I expect him to fix everything, listen to every word I say, pay the bills, follow up with the doctors, keep a spreadsheet of our biomedical practitioners, treatments, and data, run the day to day operations of our LLC, as well as manage a non-profit we are forming with other affected families.  All these things he must do or the yeller comes out.  Santa, between you and me,  I hate the yeller.  She scares me. She's so...mean. But, still--I get her.  We've got no time.  The clock is ticking.  Everyone must fall in line.  Why won't the people with brains that work, listen? If it's not about stopping the medical problems ravaging our Noah's body it gets relegated to the back burner.  So all things mistakenly labeled as autism first, everything else in life, after.  I would say second, but that would infer I prioritze outside the realm of autism.  I do not.  Doctors, doctors and more doctors, therapists, protocols, nutritionists, researchers, diets, purchases, phone calls, appointments, conferences numero uno.  Everything else, last.  I wanted to put my best foot forward this year Santa, I really did, but--in a world full of posers (yes, I am over 40 now) I just wanted to be honest.  So, despite my rotten showing this year, here is my list.  I hope you'll consider what I've been going through. 

Sleep.  Could you please bring me some? 

Relief.  For Noah mostly.  For the rest of us, too.  We all have those dark circles and that general sadness about us.  I never expected life to be perfect, but still, it seems the little ones are suffering so.  How much character does a 3 year old really need?  

Please send Autism, Oxidative Stress, Inflammation, and Immune Abnormalities edited by Abha Chaunhan, Ved Chauhan, and W. Ted Brown  to every resident entering the world of medicine.  If they treat children on any level they MUST read this book.  Otherwise, how will they know what is happening in these kids' bodies?  And Santa, on a side note, why do you think I am the only one asking for this? Given the pandemic of chronic childhood illnesses on our hands I cannot imagine why more scientists, researchers and doctors do not have this one at the top of their list.  I guess Rolexes (Rolexi?) are very popular this year.

You know how the notion of "too big to fail" really took off with all the bail outs these past couple years?  I need your help popularizing another saying: Too powerful to tell the truth. If you could include that saying along with your government and it's pharmaceutical backers in loopy festive lettering beneath, on every package you place under the tree, I would be so very grateful.    

Continue reading "Lisa Goes, Autism Mom, Writes a Letter to Santa" »

Lisa Goes Tries Quibbling with The New York Times on The Greater Good Movie Review

QuibblerManaging Editor's Note: Cathy Jameson has a well deserved weekend off. Lisa Goes created this "conversation" with the New York Times following their pillorying of The Greater Good Movie, in which they went so far as to suggest that the vaccine injured are expendable.  Anne Dachel reviewed the review as well. I've had a bit of a theme in the photos recently, can you tell readers what today's photo implies?  :) K

By Lisa Goes

Me: Wow...so your review of The Greater Good. Interesting. Tell me about what you meant when you stated, "The Greater Good” does a disservice both to the suffering of the few and to the public health needs of the many."

New York Times: Well, yes. We meant that. 

Me: How did Leslie Manookian do a disservice to these families who suffer both the loss of their children, and the permanent loss of their children's health? I mean, do you not believe their stories? 

NYT: Of course we do. We just think the way they were portrayed was gut wrenching. It was over-emotional. 

Me: Gabby is completely and irrevocably harmed. She suffers seizures, she is on over 30 medications to counteract the damage done by Gardasil. The other family, as you know, was not so lucky. Their darling daughter is no longer with them. Do you consider the accurate portrayal of death and life altering chronic neurological illness and central nervous system damage "over emotional"? 

NYT: It rarely happens. 

Me: Hmmmmm. I am friends with 2,177 people on facebook who say it does.

NYT: It doesn't.

Me: Okay. Did any of you guys get the chicken pox when you were little? 

NYT: (Silence) 

Me: Did you?

NYT: We do not recall. 

Me: You don't recall? 

NYT: No, we don't recall. 

Me: Do you guys have Alzheimer's? Because I am sure that if I had the chicken pox or the measles I would remember. Coincidentally, I was never vaccinated for chicken pox, I never had it, but yet I am immune according to my titre. (Think Austin Powers voice and crazy psychedelic music and wicked white go-go boots). 

NYT: We do not have Alzheimer's.

Me: Okay. Because you state "Also elided are the mostly forgotten horrors of measles, mumps, chickenpox and polio: instead of lingering at a graveside with grieving parents who believe vaccines killed their baby girl, perhaps the filmmakers could have unearthed some footage of children encased in iron lungs." When you guys were growing up do you remember any kids in iron lungs?

NYT: It happened LJ. We have pictures. 

Me: I am not disputing that fact. My mom's best friend was a victim of Polio. She survived but has a permanent limp. I know polio existed. But not for 50 g-damn years in the US. By the way, my vax injured son has been FULLY vaccinated for it and is not immune. What do you think about that? 

NYT: (silence)

Me: Ya think clean water had anything to do with the eradication of polio? 

NYT: ABSOLUTELY NOT. VACCINES ERADICATED POLIO! Any claims counter to that are utter heresy. 

ME: Groovy. Just thought I'd ask. 

NYT: Are we through? 

Me: Just one last question. Can you or can you not admit what a raging fu*%wad Paul Offit comes off like in this movie? Come on!!! I mean...COME ON! He is a complete jackleg. An asshat. A moron. And I'm not sure if you know but there are over 40 studies that show the correlation between vaccines and autism must be investigated further. Because they cause autism, vaccine encephalopathy, mitochondrial disease, Guillain-barré syndrome, neurological, metabolic, central nervous system failure and DEATH. Mr. Offit refuses to acknowledge or address the learned physicians and parents in our community in a public forum. He knows this science exists and he incapable of refuting it. 

NYT: No comment. 

Me: I thought not. Tell Gardiner I say, "hi." And tell him I'm not through with him yet. 

* the above discussion did not really happen * But I bet it's true. Best lj

Lisa Goes is Contributing Editor to Age of Autism.

Will the Real Doctors and Journalists Please Stand Up?

Truth_bigBy Lisa Goes

On November 28, 2011, my son's physician, Dr. Anju Usman, will appear before a judge from the Illinois State Medical Disciplinary Board to schedule a hearing for crimes unknown.  You can read the latest in a string of strange and accusatory articles that detail a father's quest to punish his ex wife by destroying Dr.Usman and denying the origin of his son's illness, at The Trib here.

Like most stories about autism that make the headlines, you'll soon gather this sensationalized drama is not about Dr. Usman at all.  It's about Mr. Conan and his personal problems. It is about our medical community's inability to embrace any departure from the lucrative foundation of group think, and the media's financial need to maintain an archaic and incomplete belief system whose origins resemble religious fanaticism more than scientific research.  Lucky for Mr. Conan, those in power have a vested interest in keeping the work and research of Dr. Usman and her colleagues as far away from the general population as possible.  She and her contemporaries are starting to have a tragic effect on the bottom line. If you are wondering what that elusive bottom line is, and you have been indoctrinated into the well-you-know-they-don't-really-make-any-money-off vaccines-anyway school of thought, let's just put that to bed right now.   Take a good long look. Couple that pure profit with unchecked legislative freedom and unethical business practices and you have what is known as the perfect crime.  Which is what it is.  A CRIME.  Because these folks, who are ethically appalled that my doctor may give your child an enzyme with some vitamin A, do not pay their taxes, (HERE). Mr. Conan is nothing more than an angry man with an ax to grind who is in the right place at the right time.  

Whew.  Now that we've got those pesky facts out of the way (something my well-paid journalist contemporaries fail to check) I would like to get to the heart of the matter. The loss of the American media.  Where'd they go? Anybody know? Our reporters, our chase that story/just the facts Lois Lanes have all retired to Boca and they've been replaced with dictation-takers.  Play it safe, establishment-loving, approval-craving dictation-takers.  My friends and I, busy concerned moms with incredibly sick kids, we are the new media. If that seems like a bold assertion for a suburban housewife to make it might behoove you to know that real reporting is not all that glamorous. Mostly because of all the annoying, necessary fact checking.  For instance, how do you think I got access to all the links I just provided for you?  Do you think I called the CDC and they said, "Why Mrs. Goes, we would be delighted to sit down with you and talk about all our secret and lucrative deals with pharma.  Oh, I can hear the little ones in the background. You must be terribly busy.  Tell us, when is a good time for you? We'll make ourselves available."  No, that's how it works for the dictation takers. Read, Evidence of Harm, by David Kirby, if you'd like to know how the government treats concerned parents who attempt to educate themselves about westernized preventative medicine.  God, what I would have given to have had someone gift me with that eye-opening chronicle of Sally Bernard et al., before the birth of our precious Noah.  The discovery process in the medical world of immune system and neurological damage is like waking up each new day to a sucker punch. It's not autism at all.  At...all.  

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A Day in the Life of An Autism Mom

Mother-beer-ad By LJ Goes

Last week I packed up my three small children, Madeleine, Noah, who suffers from autism, and Liam, along all their accouterments, in preparation for a busy day.  Our first stop was the drive through window at Starbucks.  As we pulled up the mom of one of Noah's classmates was preparing to end her shift as a barista.  This woman left her corporate job several years ago to be a stay at home mom.  Of course, that was before she knew her oldest son would suffer from a debilitating neurological disorder and her youngest would get autism. Despite her precise demeanor, professional mannerism and acumen for business, she now serves lattes so her family can have access to medical benefits.  She tells me her eldest was just hospitalized for an "episode".  Thanks to Starbucks, she will be paying $3,000 of the $45,000 her son's stay in the hospital cost their family.  She's not sure if or when, he may need to be hospitalized again. I don't know her that well but I can tell she was probably the life of the party back in the day.  I like her.  We chatted briefly about our children's teachers, therapy, and speech pathologists before we were off to the park. 

Once there we happened upon one of Madeleine's playmates from her old school, and her aunt. Quite randomly, and in keeping with the idea that God has a tremendous sense of humor, the aunt told me about a course she teaches in nursing.  She recently had her students write papers debunking Jenny McCarthy's, "goofy theory that vaccines cause autism". The class delivered, successfully refuting Jenny's assertions.  The teaching nurse was very pleased, indeed. I was flummoxed as I thought medical training was about observing and reporting, with a foundation in science--the proving or disproving is the end result of that process. Isn’t that what we all learned in 8th grade science? The sort of premeditation this woman described seemed better suited for a court room than a nursing college. Curiosity got the better of me so I inquired, "Did you know that Jenny McCarthy isn't a medical professional, but rather, a model and an actress?" While Jenny is indeed a lovely creature, I have never heard her claim to be a medical guru. I commented that perhaps, in the future, as nursing is indeed a branch of medicine and medicine a branch of science, she may want to have her students read actual scientific studies for their papers, rather than memoirs by Hollywood personalities.  

I suggested Thimerosal Neurotoxicity is Associated with Glutathione Depletion: Protection with Glutathione Precursors Neurotoxicology, Jan 2005. by S. Jill James, PhD [University of Arkansas].  If that study is a bit too heady, there's my all time fave, Hepatitis B Vaccination of Male Neonates and Autism, Annals of Epidemiology , Vol. 19, No. 9 ABSTRACTS (ACE), September 2009: 651-680, p. 659, by CM Gallagher, MS Goodman, Graduate Program in Public Health, Stony Brook University Medical Center, Stony Brook, NY.  Although locked and loaded with one more in my arsenal I had to switch gears. Noah began to meltdown in the volleyball pit.

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A Comparative Analysis of Human Rights through the Eyes of The Help

The helpBy LJ Goes

(artwork Amy Einhorn books/Putnam Order the book here.)

Of the many complex pieces that form the autism parenting puzzle, it's the copious amounts of scientific and medical journal reading that I find the most arduous. It would be fair to say I hate it. For almost three years now studies, abstracts and books about behavioral therapy, diet, vaccine science and immune function have eclipsed my bedside table. Reading used to be a stress reliever but it’s become an anxiety producer. So, Icommitted to read one book for pleasure in August. Yesterday I trotted off to Target with a little spring in my step and picked up a pristine copy of, The Help. Every member of my chaotic household was willed to early slumber so I could devour it in peace surrounded by the relaxing sounds of sleeping children, a muted White Sox game and a snoring husband.   

Within minutes Kathryn Stockett delivers and transports my autism weary mind to rural Jackson, Mississippi during the burgeoning Civil Rights Movement.  The main characters are popping off the pages as she describes their struggles to overcome the powerful bigotry, violence and fear-mongering that ruled the south for generations. Midnight approaches...1:00 am, 2:00 am. I’m dreading tomorrow but I can't seem to stop.

On page 184, our protagonist's soon to be ex-best friend, Junior League president, leader of all relevant southern housewives and pristine bigot, Hilly Holbrook, pen's her, "Home Help Sanitation Innitiative" in an effort to successfully promote the illusion of "separate but equal" and advance her husband's political career.

Hilly Holbrook introduces the  Home Help Sanitation Initiative.  A disease prevention measure. Low-cost bathroom installation in your garage or shed for homes without such an important fixture. Ladies, did you know that:  99% of all colored diseases are carried in the urine.  Whites can become permanently disabled by nearly all of these diseases because we lack immunities coloreds carry with their darker pigmentation. Some germs carried by whites can also be harmful to coloreds too. Protect yourself.  Protect your children. From the Holbrooks, we say, You're welcome! 

It's like someone took pure evil, translated it into words, drenched the tidy little paragraph in African American blood and wrapped it in a lovely blue box with a white satin bow from Tiffany's. Had our government not so successfully pushed the Hepatitis B vaccine on all our newborns with nary a blink from the consumer public, I imagine they might have hired Hilly to do their PR for them:  

Hilly Holbrook introduces the life saving Hepatitis B vaccine.  A disease prevention measure.  Low-cost administration of this miracle vaccine is available for your promiscuous newborn within hours of birth!  Did you know that:  Hepatitis B is primarily transmitted through sexual contact. While this exclusive vaccine was originally just made available to prostitutes and IV drug user by virtue of Pharma's extraordinary humanitarian efforts it is now accessible to just about every newborn in the world!  Why, places that don't even have clean drinking water and food have access to this amazing product thanks to its generous benefactor, Pharma.  Since Pharma has gone to such extraordinary measures to bring your baby this life-saving vaccine you should know that if your child suffers any debilitating side-effects as a result of its administration, thereby requiring a lifetime of care, Pharma is absolved of any cost associated with this unfortunate outcome. From pharma and the government we say, You're welcome!

Several pages later, our control freak leader has grown irritated. Her friend Skeeter doesn't agree with this separate but equal garbage because any fool can see the latter is a sham. People are starting to talk about Dr. King. The world is changing. Hilly says to her lap-dog friend, Elizabeth, "Separate but equal...that's what Governor Ross Barnett says is right...and you can't argue with the government."

Damnit if that's not the kind of idiocy I hear everyday from people who are telling me to let this go, move on with my life, this is just the way things are, no shots no school, how many time do you have to be told?  Whisper, whisper, "LJ...conspiracy...looking for someone to blame...muffle, muffle...always making it harder than it has to be...Tell me, is Mads looking forward to first grade this year, hon?" 

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Protecting Their Own: The Unofficial Vaccination Policy of Doctors in the Know

Dr. disguise By LJ Goes

At present I have over 15 physicians programmed into my blackberry. Those are just the doctors, pediatricians, specialists and family practitioners I talk to on a regular basis.  There are several others I research, cold call and visit. I spend my time on this because it's imperative that I have a competent mainstream pediatrician that knows our family in the event of a true medical emergency.  Plus I like to chat with them about vaccine science and iatrogenic illness. Sometimes they talk to me, sometimes they don't. I recently reconnected with a mainstream doctor affiliated with a large hospital and a thriving practice in thje midwest. We've had many interactions over the years but on this particular day this physician had quite a bit to say. These were his words as they were spoken to me. For the purpose of protecting his anonymity I will refer to him as "The Doctor."

The Doctor on Gardasil:

"Gardasil?  What the hell is that? That shouldn't be on the market for another 30 years. We have no idea if we are causing this disease to mutate and become more harmful and stronger than it is now.  No idea. We'll find out I guess. Anyway, I talked about this with my partners and they were adamant, "you have to give it to your patients." I told them I am not telling my parents they have to give this to their 9 year old. I got looks like--crazy. They thought I was nuts. My partners are saying to me,"you gotta give it."

I told him I was aware of over 90 deaths and life-altering adverse reactions as the result of Gardasil. He did not respond.  

The Doctor on Hepatitis B:

"I mean, they have us vaccinate jaundiced babies with Hepatitis B!  What are they thinking?  What is wrong with them? I mean, Geez. Is this really necessary? Come on."

This was a particularly difficult thing for me to hear. My son Noah was jaundiced at birth and received the hepatitis B vaccination without our consent,on the day he was born.  My swollen yellow baby boy never cried and only grunted for months. Such a good baby...the four words everyone who knew him uttered repeatedly, for a year straight.  Such a good baby. I continued to vaccinate him on schedule.  My pediatrician (not this doctor) was not alarmed by his enlarged body, swollen head, limbs, and distended torso. He was described as "roly-poly", though he did not routinely eat and digest food until he was 3. During his second year of life he did not gain weight. My repeat concerns about his development were met with "Mrs. Goes, he looks healthy." I broached the topic of Hep B with The Doctor, during a previous meeting two years ago.  At that time, I mentioned our third child (who does not have autism) had not yet received the vax.  He rolled his eyes and said, "Why? All babies get that in the hospital at birth? Everybody does it." His tone was accusatory but he offered no explanation as to why it was important. 

The Doctor on Varicella (Chicken Pox): 

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A Look at Causation: The Killer Autism Mom Phenomenon

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Contains adult language


By L.J. Goes

"Yes. Today is the day."  As I read about the murder-suicide of  Maryland Psychiatrist, Dr. Margaret Ferne Jensvold and her son Benjamin Barnhard, (MyFox DC Margaret Jensvold Autism Murder Suicide) I pondered if their tragedy began with this sort of detached speculation. "Gotta remember to stop by the grocery store and the bank before I pick up Ben from school. Do we need grapes?  I should have checked. Did I fill out those forms for summer camp? Looks like I might need to get some gas on the way to work. When to end our lives...when to end our lives." Do these horrific thoughts just co-mingle with one's day to day internal chatter or do they eclipse rational thought over a period of time, like obsessions?  Dr. Margaret was certainly the person we would have gone to to ask such a question, as psychiatry was her specialty. Did she plan their demise for several days? A year? Or did she simply pay too much attention to the passing thought that death was a pleasant alternative to life at a particularly weak moment? Seems odd that a pragmatic person known for helping others would act so drastically. 

 All we know is that Dr. Margaret had a lawsuit against the National Institute of Mental Health for sexual harassment and that a judge came along after an eight person jury found in her favor and overturned their decision.  She was a compassionate professional who cared about women's heath and overcame adversity, according to her attorney. Her son Ben was a good kid and liked sailing with his dad. He was overweight, had autism, suffered at the hands of bullies, and his mom killed him before his 14th birthday. 

During a recent conversation with my friend, autism activist, Ginger Taylor, I kvetched about my life.  "No one is listening. My calls to our political leaders go unanswered. My pleas for local doctors to address the growing concerns of parents receive no response. Every time I do an interview the reporter's pen stops the minute I start talking causation. They smile, focus somewhere on my face (never the eyes) and tolerate the education. Then they nod and dutifully eruct a "huh, interesting..." so they can segue as comfortably as possible to the next meaningless question, "so what's your autistic (cringe) son's favorite toy?" 

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Autism The "It" Disease: Dr. Al of the DSM-IV Scores One for Pharma

Absurdity-mark-twain-resize By Lisa J. Goes

"Well, Mr. and Mrs. Goes...about your son..." "Yes...yes? What is it doctor?"  I was ready to practically jump out of my skin with excitement.  My husband and I were holding court with the tippity-top, bestest of the best pediatric neurologists in the whole of Chicago and she was about to hand down our son's diagnosis.  "Clearly, you already know...your son has Autism." 

 "Sweet!" Simultaneous high fives, fist pumps and mid-air chest bumps ensued.  "I knew it!" My husband exclaimed!  "I am so psyched!"  We hurriedly thanked the celebrated doctor, bundled up our totally cool kid and headed for the car to start texting and facebooking the good news.  "Oh the Johnstons are going to be green with envy." I remarked, my voice teeming with satisfaction.  

"Yeah," my husband said--"and the Smiths. Man, they think they are so great with those twin Mercedes...and that whiny kid of theirs with that annoying asthma. Always complaining, "maaahmmmy, daaaaddy, I can't breathe." I can't wait for the next barbecue to show off that--what do you call it? That, IEP thing our son is going to need. Totally trumps an inhaler. That's right Smith kid, our kid is so much better than you he get's to go to a special school!  Bwaahahaha!" 

"Oh look, babe!  He smeared his diarrhea all over the window!  Hang on...I'm gonna tweet this, the girls are going to flip!  Hey, can you hand him that strip of tin foil he likes to chew on, that screaming is driving me nuts."

Sounds absurd doesn't it?  Not to Dr. Allen Frances, former chair of the DSM-IV and author The Autism Generation.  He writes, "The most likely cause of the autism epidemic is that autism has become fashionable--a fad diagnosis." He goes on to speculate the reasoning for this is so that parents can gain access to services for their children that they don't actually need. After digesting his post along with my morning coffee I marched right over to my son and explained the world according to Dr. Al.

"Hey, angel man!  Guess what? Autism is a false epidemic!  You may now start processing information just like the rest of us."  He smiled, spit up, smeared the DNA filled liquid all over his finger tips and pressed it into my eye sockets. This went a lot like an episode several months back, when I told him about the Good Doctor. "Great news, son!  The GMC says the measles in your gut are fraudulent. You can stop having explosive diarrhea umpteen times a day!"  He promptly...well, you can probably imagine.  If not, I posted it on Facebook.  Where most folks showcase their kid's soccer triumphs, I post pictures of diseased bowels, so other parents who are told they are making up their children's illness can see they are not alone.

In TAG sentence after sentence is rife with inaccuracy, blaming parents, non-pharma funded studies, celebrities and advocacy groups for the "false" prevalence of autism. Ah, but there is a surprising twist. In some ways, Dr. Al is actually one of the good guys. To his credit he is a champion of the people on the issue polypharmacology.  I've read several articles he has written prior to TAG, and it is clear he is passionate about halting the practice of over-medicating.  He frequently cites the Hippocratic injunction,"do no harm".  A strong proponent of cognitive behavioral therapy for the treatment of PTSD he states, "It is important to recognize that sometimes the treatment becomes worse than the disease."  The "treatment" he is referring to is the practice of prescribing pharmaceutical solutions to solve the side effects caused by previously prescribed pharmaceutical solutions.  Drugging, drugging, and more drugging. While it has a lovely effect on pharma's bottom line, it actually kills people, and Dr. Al is bothered by this. 

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Hate the Autism, Not the Kid, Please.

Angry-mom By L.J. Goes

“Do they hurt?”  A frustrated mom of four snaps at her tween boy.  He looks thoughtfully down at the shoes on his feet and takes a bit too long to respond.  “Do they hurt?” She hisses as she grabs his bicep and squeezes.  He’s taller than her but very thin.  He doesn’t respond so she shoves him a little when she releases her grip.  “Sorta.” He replies with a half smile. His face is so much younger looking than his gangly frame portrays. Red cheeks, red ears, pale face. He's itching his arms.   

He flaps a little. 

“Good!”  The mom says, as she yanks a shoe off his foot throwing him off balance. “Maybe, if they hurt, you will learn to stop walking on your toes and walk normal!  It’s sad that this is what it takes don’t you think?”  She answers herself,  “Yep. Very sad, Tim.”  She throws both shoes in her shopping cart and rolls her eyes at him. He’s looking at her with that same faint smile but he doesn’t say anything. Quickly as if something in his brain told him it was the right thing to do, he drops his head down and focuses on the task of getting his old shoes back on his feet.  He stares at his awkward fingers, willing them to act. I can almost hear the misfiring neurons, so few actually reaching their intended destination. “Okay…you can do this. Pull the strap, pull the strap, something happens when I pull the strap, come on…”  He’s moving at a snail’s pace.  God, I want to help him with that Velcro before she opens her mouth again. I’m genuinely afraid I might deck her.  This is my Target, my happy place. It would be very bad if that happened.  

Given my own current situation, three small kids, one with autism (the hyper-run-into-traffic-high-pitch-scream-and-disrobe-in-public kind) I tend to have empathy in abundance for parents in discipline mode.  Not in this case. Tim is still laboring away at the shoes when the other three kids start acting up. This is his fault, too. “Would you come on? We don't have all day.”  She yells as she takes off with the younger kids leaving him to catch up on his own.  “Gawd, this is ridiculous, Tim, you push me, you really push me.”  She mutters under her breath.  He runs after her yelling too loud, “Mommy! Wait!” his shoes still not properly fastened, arms flailing, smile beaming.

Later that same afternoon I take my daughter to the dentist.  I’m sitting in the waiting room when a handsome dad with salt and pepper hair walks in with his two sons.  He’s got money. His great watch and supple Cole Haan butterscotch driving moccasins tell me so.  I remember the days.  I drove my husband’s Jag to this appointment,  I remind myself, as if things are not that bad.  Who cares, though?  Honestly, I don't. Stuff holds a different place in my life now and any part of my thought life devoted to it seems like precious time wasted. What I miss is the silliness associated with luxury. Reading for pleasure. Shopping trips with friends, long lingering wine lunches discussing newspaper headlines, people we know, travel plans. The mindless passage of time.  Frivolity. Meaningless fun. It all seems terribly self-indulgent, when there is so much work to be done. Besides, our travel plans always involve Houston or New York, the only two places on this entire planet where my son can get proper treatment for his complex bowel disease and metabolic issues. The conditions we wacky autism moms "make up" according to the media and pharmaceutical lawyers.  Too many kids are getting sick and dying for me to care about the next trunk show at Nordstrom's. Maybe I’ll care again, I think almost outloud, as I look down at my Merona jeans and Cherokee flip flops from Target. Doubt it.

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On The Normalization of Autismization

Tear

Managing Editor's Note: Please welcome our newest Contributing Editor, LJ Goes.

By LJ Goes

I published The Normalization of Autismization, found HERE,  as a note on facebook early last month. In 3 short days it was picked up by blogs that boast international readership, and featured on the radio talk show, Linderman Live! By day 5? Translated into Hebrew. Who knew a note fired off in the heat of battle with the bugs infesting my son's intestines could have touched the hearts and lives of so many people?

I have received over 100 emails and notes detailing the experiences of others coping with the devastation of chronic illness, immune dysfunction, and bowel disease that go hand and hand with autism. Sentence after sentence about the harrowing and often life-threatening components of this illness that our children deal with filled my inbox and facebook page. They are still pouring in. Here are some paraphrased examples of what I have been reading over the course of this week.

"My 16 year old son is still in diapers, this is my life."

"Why did this happen to my son, what could he have done to deserve a life like this?"

"It's like you were a fly on the wall in my house. How could you know?"

"I've lost my faith, but thanks for writing your story just the same."

One mom, who will forever remain etched in my mind's eye had a child near recovery only to have her ex step back into the picture, vaccinate him, and leave again once the autism symptoms returned. She lost her job, has no place to stay, oh and, a neurotypical child to raise, too.

This is the reality of autism. Not "feel good" walks. Not big parties with celebrities. No loners who go on to become multi-bazillionaires. Unless of course, you are Bill Gates. The reality of autism is physical illness, depleted bank accounts, nervous siblings, and exhausted parents. "I lost my faith..." she said. This one I can't shake and I pray for this mom daily. I could not get out of bed without mine.

A week later (with only one additional and minimal poop smearing incident) here is a status update on all things Goes:

Liam had a breakdown. I know 3 year olds tantrum and lose their cool, but Liam had a torrential breakdown over the idea that Noah might steal his favorite dinner, a hastily prepared, organic pb and j. It was not on gluten free bread and he knew it, because upon presentation he said, "Ohhhh, yummy bread!" He does not have a gluten sensitivity and organic spelt is cheaper than GF bread so we serve it up when we can. Despite his joy over his favorite lunch (with the added bonus of it coming at dinnertime no less) some sort of emotional breakdown occurred as he sat down to eat. Through his tears he kept repeating "Noah get sick! Noah get sick, No momma, no food, Noah get sick." I tried to explain that I would make sure Noah did not get his food, and if he sat at the table and ate it, with me by his side, he had nothing to worry about. He cried for an hour and twenty minutes. He could not calm down enough to eat. Know any three year olds that in tune to their older brother's issues that they boycott a meal for fear the elder may fall ill? It did not help that Noah circled the table the entire time, shouting "BREAD! BREAD!" At the top of his lungs. Mads held it together for quite some time before she snapped and screamed at them both, "BE QUIET!" Her eyes were huge, she was shaking and pointing at them in her vehemence. Liam went to bed with rice milk and 3 apple slices in his belly.

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