Warrior Son

Managing Editor's Note:  Jeanne Cantkier blogged this story at her site Charlie in Wonderland. I asked her if she'd share it with our Age of Autism readers. Thank you, Jeanne. Here's what Charlie told his Mom:

“I gotta have those meds so I can talk.”
“Talk about what?”
“Just talk. Like what I didn’t do when I didn’t use my words.”
“Charlie, do you remember when you didn’t talk?”
“Yes.”
“Do you know why you didn’t talk?”
“It was my brain Mom.”
“Your brain?  What does that mean?”
“I couldn’t talk because my brain wouldn’t let me.”
“How come?”
“Because my brain wouldn’t let my voice work.”

By: Jeanne Cantkier

Charlie was not born with autism; but, as time went by, there was a dull sense that, compared to my two older children, something was different.  From age two until age six, he exhibited many puzzling problems (some might say rogue symptoms), which garnered no more than a “don’t worry” from the pediatrician.  Problems such as: chronic diarrhea; chronic sinus problems; loss of language; no eye contact; no social interests; many sensory issues; no understanding of danger; a very high threshold for pain; nosebleeds; escaping/running away; random screaming; tantrums; sleep problems; severe hyperactivity; migraines; and seizures.  Somehow, this brief description does not quite express the hell in which we all lived, especially Charlie.

For the past three years we have been implementing biomedical interventions with Charlie for his various medical problems, which we now believe were caused by vaccines he received between birth and eighteen months of age (and then again just before the start of kindergarten).

Our initial introduction into the world of biomedical interventions was provided by The Autism Solution Center.  Through information we learned at workshops we attended at the center, we decided to start off with a casein free diet.  We were shocked when, within one week, our nonverbal, non sleeping child was starting to talk and sleep.  We then pulled gluten and saw major improvements with eye contact, more speech, and even better sleep.  For a year and a half, and under the guidance of the center’s then DAN! doctor, we did some basic biomedical treatments with vitamins and supplements.  With each treatment, Charlie leapt forward in his recovery.

One year ago, we began working with a new DAN! doctor, Dr. Georgia Davis.  Through thorough testing, we were able to determine a new, more aggressive course of action to treat Charlie’s many medical problems.  Because of Dr. Davis, our son's complete recovery is within site. In addition, several months ago, we took Charlie to see Dr. Arthur Krigsman at Thoughtful House.  Dr. Krigsman's treatment has brought with it incredible improvements in Charlie's recovery and quality of life.  Having said that though, even with so many improvements, the past year has been very difficult and frustrating for everyone involved - two steps forward, three steps back.

Through the course of the year, my husband and I would talk a lot about how the treatments we were giving Charlie must surely make him feel better, because he never complains about any of it - not the dietary changes, not the medications, not the tests.  Instead of complaining about new treatments, which would be understandable, Charlie asks three questions, “What exactly is going to happen?”, “How is this going to help?”, and “Will this make it so I can eat regular junk food again?”

We’ve all been amazed to watch as with each step of his recovery, Charlie’s language and communication skills have improved.  In the past few months he has been able to talk to us in ways he never had before.  He has told us stories about when he was nonverbal, such as:

“I gotta have those meds so I can talk.”
“Talk about what?”
“Just talk. Like what I didn’t do when I didn’t use my words.”
“Charlie, do you remember when you didn’t talk?”
“Yes.”
“Do you know why you didn’t talk?”
“It was my brain Mom.”
“Your brain?  What does that mean?”
“I couldn’t talk because my brain wouldn’t let me.”
“How come?”
“Because my brain wouldn’t let my voice work.”

Then there were stories of how his brain was feeling when we discovered he was having seizures:

“Mom! Help! My brain is rocking.  Make it stop Mom.”

or...

“Mom, my brain is fighting me.”  With this one he drew a picture depicting his brain, as a separate entity than his body, wearing boxing gloves and literally fighting him.

or...

“Mom, there is slime on my brain and in my belly... make it go away Mom... it’s going to explode.”

Lately there have been statements made about his overall recovery, the way he is feeling, and about autism.  Such as:

“Mom?”

“Yes Charlie.”

“Am I in autism?”

“Are you… what did you say?”

“Am I in autism Mom?  I am ain’t I?”

“Sweetie, don’t say ain’t, say aren’t…. and… well, yes, you do have autism… that’s what they are calling it right now anyway. <<under my breath>> I like to call it vaccinosis!”

“But why Mom?  Why am I in autism?”

“Ummm…”

“Was I born in autism?”

“No, you weren’t!  You were born healthy, happy and most definitely NOT in autism.”

“But why did I get put in autism?”

“Well, that is complicated… let’s see… first you were given some shots that made you sick… things we didn’t even know about back then… you got really sick in your belly and then started having all kinds of allergies… but we didn’t know it … so we kept giving you the foods you were allergic to… that made you get more and more sick… but then we found a way to help you… your special diet… your medications… and now you are doing much better… you aren’t anywhere near as sick as you were before… and now Dr. Krigsman is fixing your belly… and Dr. Davis is fixing everything else… soon you will not be in autism anymore… you may not be now… just still a little sick… that’s it… but I’m doing everything I can to get you better sweetie.”

“Thank you Mom.  I do feel a lot better.  No more slime in my brain and monsters in my tummy.”

“That’s right!  And you’re doing such a good job… being such a big boy… Mommy is very proud of you for all of your hard work to help us get you better.”

“Thank you Mom.  Thank you.”

Hearing Charlie talk about what it was like for him “in autism” just proves to me the silent suffering he has endured, and the suffering all of our kids endure.

My son was not lost, he was in there all along.  He was aware.   He had a voice; but his brain would not let him use it.  Now that he can express himself so well, communicate so clearly, he lets us know what it was like for him in those dark days.  He is a window into the world of autism.

Charlie has struggled valiantly to free himself from the claws of autism.  He wants recovery for himself just as much as we want it for him.  He does what needs to be done, and with no complaints.  He is my hero.  He is my Warrior Son.

Jeanne Cantkier is the mother of three children: two teenagers (Calvin, age 14, and Julie, age 13), and Charlie, who will turn 7 in a few weeks.  Charlie was diagnosed with autism at age 4. 

Comments

[Cassidy]

Hi i am 10 year old girl. I have a 8 year old atisum brother named cj. I loved your story it's a very nice. It reaminds me of him. we have done the same thing you did the supliments everything he is doing better. When we talk about disney stuff he jumps ands screams happly. thankyou thankyou so much to share your story.

[Julie Martin (Jeanne's sister, Charlie's Aunt Juju)]

Jeanne,
I'm so proud of you. Not only are you an amazing mother, but you are a dedicated and passionate advocate for ALL children! Charlie's recovery is a testament to your determination and fortitude--even in the face of doubt and criticism from many who float blissfully down the river denial. You are an inspiration!

;)

[Autistic by Injection]

I love stories like this one. I often wonder what Mickie things about all the pills he has to take. I wonder what he would say if he could talk.
One thing I feel is that he knows I'm trying to help, even if can't tell me with words, I can see it in his eyes.

[Barbara]

Jeanne and Charlie, Thank you so much for shareing your survival story. i am a grandma of a now 7 year old. the day i saw my first grandson dancing and flapping his hands in front of the tv onr day after getting his shots and running a 105 fever for a week . and having cesures. i died. my life changed dramadically. i have been so sick. i have so many illnesses sence he has been sick. but thanks to people like you for giving us hope. he is saying some words now. and is being DETOXED. UNTIL THEY MAKE VACCINES SAFER. WE ARE A NO VACCINE FAMILY.

[Cherry Sperlin Misra]

Dear Hip, Please keep an open mind. Before focusing solely on the virus, think about sources of mercury in your life. Could it be in your water? Have you been taking flu shots? Did you have dental work involving re-moval or placement of "silver" fillings? Have you eaten a lot of fish, especially large fish such as tuna? Have you handled any chemicals such as agri chemicals /anti fungal agents that could contain mercury? Did you have any immunoglobulin injections? Do you live near a coal fired power plant? The result of any kind of mercury exposure is that your immune system will be deranged and you would not be able to fight off infections. I dont think we yet know how long this effect lasts ( See research by Isaac Pessah at U Cal. Davis) The mercury could explain your other symptoms, too. There are many possible symptoms of chronic mercury poisoning and you can look at those on Google. I myself once had an angiogram done because I had palpitations and irregular heart beat.The angiogram showed that my heart was fine. Finally it struck me that I had had dental work done some months earlier. Within a month of the angiogram, the symptoms vanished. You see, it isnt only pediatricians who dont have mercury on their radar- it is all doctors.

[Sue]

To Jeanne,

Thanks for posting your son's story and words. There is so much you write that resonates with my experience, though my family's journey has been entirely different. My kids never really lost their verbal abilities, so that river of denial you write about in the full length piece on your site is one that I swam in too. I swam, and swam, and swam. I am not sure I can ever get entirely out of it as it is just too painful. I think the doctors, the CDC, etc. continue to float down that river because it is so much easier than facing the terrible truth that vaccines are implicated in millions of children's health and behavior problems. Your son's story is bound to cause a few to realize they are going to drown if they don't head for the shore of reality soon. Maybe even a few doctors...

To AofA readers--Read Jeanne's full length version of her story--I think it includes important info not in the shortened AoA version.

To Jeanne's mom,

Thank you for posting the comment with your perspective on your daughter's fight for her son. For some reason, your supportive words affected me even more than your daughter's story. I think that is perhaps because it sometimes seems that it is only parents who have suffered through firsthand, and observed all, who really are able to see the full picture. And there are still so many folks, everywhere, who just don't see, don't listen, don't read, and don't believe--in spite of all the evidence at hand. It is toughest when the doubters include friends and family. Thank you for "believing." Somehow that statement meant a lot to me -- a person who doesn't know you, your daughter, or your grandson.

I wish all parents had the kind of emotional support your post indicates you are extending to your daughter. I suspect your "belief" in what your dd has experienced, and is doing, and has accomplished with her son, is far, far more helpful than you, or even she, may realize. I also think it is going to take a lot more grandparents like you, supporting and chiming in with parents, to make the people who need to hear, actually listen.

[Michael (Charlie's Dad)]

It is so exciting to get spoken words from Charlie that he was "there" all along. I really think that is huge and raises hope for those who have not started to recover. Knowing that there is "someone" in there waiting to be themselves can really inspire to stick with hard work needed to get these kids back. Jeanne, although Charlie is a mega uber warrior, you deserve credit for arming him to the teeth with the weapons needed defeat the enemy of Autism. Together you are a military force to be reckoned with! And... Happy Birthday!!!

--Mike

[Angela Warner]

Jeanne,

Thank you so much for sharing Charlie's amazing recovery process with us all. You are an inspiration to me and I am so blessed to have you as a friend.

I've never told you what a thrill I get when we're on the phone and I hear Charlie's sweet voice asking you a question, or telling you something. If I didn't know the story, I would never guess he (or you) had been through any of this.

Your determination and Charlie's hard work have brought him to this point. Charlie, we are so very proud of you! You are truly a Warrior Son!

Jeanne please give yourself and Charlie a big hug and a kiss from me!

[Christine]

rileysmom, I read your story on chronicsorethroat.com. That sore throat that you have is not from a virus that you caught - it is candida yeast overgrowth. You have mercury toxicity which causes candida. I had all of your symptoms - they went away after getting my silver amalgam fillings out and seeing a doctor for chelation. You have done a lot of research - now you may want to look up candida. Follow the diet, remove your exposures to mercury (fillings, fish,vaccinations, etc.) and if you can - find a doctor who is experienced in chelation.

Jeanne, thanks for sharing your wonderful story.

[Jeanne]

Well, now that I've spent a full day (yesterday) bawling like a baby over all of these comments, I thought I'd hop on and say THANK YOU to everyone. Your kind words inspire me.

I spent many years feeling alone; but, then I found AoA and all of you. The autism community is the BEST!