August 5, 2016
“I’ll take a quiet life,
A handshake of carbon monoxide,
With no alarms and no surprises.”
~ Radiohead, “No Surprises
My biggest “aha” moment on my no-expenses-paid autism tour was this: The world couldn’t care less about the disenfranchised – especially when it comes to autism. Yes, people would rather have that “handshake of carbon monoxide” than learn a hard truth.
Too hard to swallow? My point precisely. And if it pleases the court, allow me to make my – very personal – case.
EXHIBIT A
When I first noticed Ezra was behaving differently, I had a specialist evaluate him; he dismissed me as another nervous mother. I suppose hindsight would be 20/20, if these “experts” ever bothered to look back.
After that, we saw Ezra’s pediatrician who bestowed two diagnoses on him: Sensory Processing Disorder and Speech Delay. Apparently, Ezra couldn’t get an autism diagnosis if he flapped his arms from here to Russia, but I’ve got the fecal smearing stains to prove he had and has autism. And yes, all the while the vaccines continued, even with these delays.
Wait! But don’t “experts” say it’s too easy to get a diagnosis? Thus, causing inflated rates?
EXHIBIT B
To get treatment for those two diagnoses, I had to spend weeks pleading with Health Department workers, only to receive 60 minutes of speech and occupational therapy per week.
Inertia creeps from the top down. I recall New York Governor Cuomo calling autism “an unsustainable expense.” Perhaps he hopes parents surrender to these inefficiencies; it would certainly decrease that “unsustainable expense.”
EXHIBIT C
A few months into therapy, Ezra was still regressing, so I raised concerns about autism to his speech therapist. But she had another idea, “Your son has an attachment disorder with you.”
Okay. So, my son stopped talking, playing, sleeping, etc. because of me. Heard the term “refrigerator mom?” The concept still exists, just has a new moniker.
But here is the kicker: I was so desperate for any answer, so stripped of self-worth, I fully took the blame. So that when a child psychologist finally diagnosed Ezra with autism, I repeatedly protested, “It’s attachment disorder.” Thankfully, she repeatedly told me I was wrong.
Okay, truth prevailed, but not without an “expert” leaving her scar on my soul.
EXHIBIT D
Now that I had the diagnosis, I needed to get therapy for my son. This meant we had to see Ezra’s pediatrician to receive the necessary prescriptions. But when I informed her of Ezra’s autism diagnosis, she rolled her eyes and proceeded to expostulate about why the diagnosis was false.
But this time I argued back. Finally, after actually watching Ezra, she capitulated that Ezra may have light autism. But her resistance haunted me, I repeatedly thought, “Did Ezra have autism? Or did I do this to him?”
Another expert, another scar.
EXHIBIT E
Ezra had his diagnosis and his prescriptions, so did the state readily give him services? No.
Once again, I found myself mired in red tape, begging for services. After getting nowhere, I saw I had to work around the system.
I purposely attended a ribbon-cutting ceremony where my district representative presided. I hunted him down and told him Ezra’s story. He actually took me seriously and wrote a personal letter to the right person. Instantly, a caseworker called me and told me about the many therapies Ezra could receive.
Did I mention New York is one of the best states for autism services? I’d laugh, if it didn’t make me cry.
THE VERDICT
Society is guilty of inaction and complacency when it comes to autism (and many other issues, but alas, this an autism blog).
People see autism rates skyrocketing on the news and say – WTF! But the majority won’t seek the truth because it’s a downer to find out we may have to change the world. I know it because I was like that once.
It’s just so much easier to believe convenient, conventional theories in our pressure-laden society. As Thom Yorke so eloquently sings, “no alarms and no surprises please.”
~ Truthbomb SK
Truthbomb SK graduated Phi Beta Kappa from the University of Maryland with a degree in Psychology. After graduation she went Switzerland to become an au pair, backpacked through Europe, and did a year in Israel on a kibbutz. When she returned to the States, she entered a PhD program in counseling psychology, but she left the program when she realized that research conclusions were often forged to fit the hypothesis. Instead, she embarked on a career in advertising as a copywriter where she worked with Nike, Angie’s List, Xbox and more. Truthbomb SK left advertising after learning her child had autism. Now she focuses on healing her son and herself. She calls her son her greatest gift because he awoke her to the true fundamentals in life.
This is such an important story to tell. Your incredible dedication to Ezra is heart-warming and inspiring. Thanks for all that you do and for telling it like it is!
I have nearly recovered my son who was diagnosed at 2 yo with severe autism, not now ‘very mild’ by Dr Usman.
most of the kids have heavy metal toxicity, mercury, lead, aluminum etc.
go to FB andrew cutler think tank.
for expert help
costs are little, the main issue with the kids is metals, u can get a hair element test for 85$ which will tell u what minerals and metals your child has
this is no joke
its the cure, most of these other drs are treating symptoms
So true how many people object with down right indignation at anything that may require them to put down their shiny little pacifier and have a look at reality. Not only do we have to overcome their loyalty to their ignorance but we need to curb their ability to teach that loyalty to the next generation…
Dr. Natasha Campbell-McBride’s book Gut & Psychology Syndrome may also be helpful to parents of Autistic children. Or indeed for anyone with a desire to rebuild their immunity.
It just wont go away :
Trace Amounts is a terrific film! Eric does an amazing job of making complicated concepts simple and straightforward.
The world is changing. One person at a time with help from writers like you who shine a light into the dark corners.
Thank you.
Thank you Jennifer!
My heart goes out to you and Ezra.
There is a lot of hope. If I may guide you toward my book, https://www.amazon.com/Dragons-Daisies-Behaviors-Childhood-Education/dp/0996535101/ref=sr_1_1?ie=UTF8&qid=1442433436&sr=8-1&keywords=dragons+and+daisies
You will find explanation of flapping and other sensitivities. It tells you the next steps in these areas.
Great success to you!
~ Letha
An article about complacency—https://findingmykid.com/2016/06/21/del-sur-v-manifesto/
What a struggle! Your story is like so many others, except that most of the others are not getting the information or results you’ve worked so hard for (for your son). Bravo, momma! How many unknowing parents, physicians, and as you say, “experts” will continue to bury their heads and regurgitate the falsities that they and we have all been fed? The medical field, pharma, and government agencies will someday change their tune on autism, vaccinations, and more unless money continues to blind them all.
What a beautiful picture of you and Ezra. I see so much joy and wisdom in his eyes. Thank you for sharing your story. Blessings to both of you, Tina.
http://www.goldenhealings.com
My son had heavy metal toxicity caused by mothers dental amalgams
But he now nearly completely recovered by using dr Andrew cutler protocol.
And mb12 shots
From severe t ok very mild dr u2
Stop vaccinating your children and see what happens. There has never been a comparison between vaccinated and unvaccinated done by the CDC or the FDA. WHY???? They are afraid that the unvaccinated children will show no signs of autism and that information will destroy the pharmaceutical companies. I actually know several parents who do not vaccinate their children and they are very healthy and very smart.
Nancy,
Definitely agree this study needs to be done. They hide behind the excuse that not vaccinating a child purposely is unethical. Well then use the amish and other communities who don’t vaccinate and compare the rates easy enough!
study will never get done a big pharma bakes 30 billion yr off it
in back pockets of politician like Hillary
“Autism is complex and autistic people and their families don’t expect or want people to be experts,” Lever explained. But a “basic understanding could transform lives.” National Autism Society
Just think of the increase of understanding if the book Mikey could find a home in one classroom in every school building, Give a teacher, this book to help with understanding, acceptance and awareness of a child with autism in that school.
http://www.lakesideeducationalservices.com/mikey, Amazon
yes this is absolutely correct!
Parents! When will we march to Washington with our kiddos pictures on quilts – camp out on the lawn over their – better yet – for those who can – bring our kiddos with!
No one responded! We need to fight!
I’m with you. Don’t take the unresponsiveness personally. WE are all so bogged down trying to heal our children/appreciate our children/logistics of life. But yes, there should be a VAXXED/TMR march on Washington and it should be soon – there is no time to waste.
~Cheryl , we are fighting , in every way we can . The vaccine monster will not be felled easily but we’ll get it eventually .
All of us parents have to do our bit ! Many scientists & doctors and good men have already put there very lives on the line over this . Jeff Bradstreet , Liz Birt etc