I was invited by Kim Stagliano to write a piece for Age of Autism regarding the comments Charlie has made about what autism is like for him.  Initially I was thrilled… I mean, who wouldn’t want to be published on Age of Autism!?!?  It’s like finding the freaking golden ticket!

But, as I began working on the piece, I found I continually came up with other tasks to complete.  I was confused.  This was (is!) a big deal for me.  Age of Autism is… well… I’ll just tell you what I told Kim:  Age of Autism has been my companion through some very dark times.  It has been a beacon of light in an otherwise very dark tunnel.  I have met some very cool people on AoA, I’ve learned some lessons, I’ve laughed, I’ve cried, and I’ve yelled in anger.  So how could it be that I was given the honor of being published on my favorite site; but, trimming my toenails seemed to be more important?  Sickness.  That is what it was.

I was telling my woes to my sister one day.  I said, “I just don’t get it.  I want this; but, I can’t bring myself to finish the piece.”  My sister said, “That’s your fear talking Jeanne.”  Ding, ding, ding.  Give the girl a prize! There is a huge amount of fear involved with writing about Charlie’s history.  It’s not something I have done very often (or recently).  I realized then, writing about what happened to Charlie opened the wound, and every word I wrote was salt.  It was very painful.

Once I said the words out loud, “I am afraid of these emotions.  I am sad.  I hate what happened to my child, and to every child affected, every family.”, I was able to move past the writer’s block and finish the piece.  Actually, what ended up happening was the creation of two separate, but related, pieces.

The first piece was a fairly long history of Charlie’s autism diagnosis.  The second piece was a shorter, more reader-friendly version of that piece, which I turned in to Kim for publication on AoA… finally.  Thank you Kim for being so patient and understanding as I worked through the waist-high crap that came with rehashing the past 4 years!

So, if you want to read my very first contribution to Age of Autism (OMG!), CLICK HERE.  If you want the full story, keep reading:

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Picture this:  a mom standing in the middle of her cul-de-sac, screaming her child’s name at the top of her lungs, and with such anguish you think she might die on the spot.  That was me 4 years ago.  My son had escaped from our home again, but this time he was not in the backyard, this time he was nowhere to be found.

I remember when I was younger, hearing about kids escaping from their homes, and thinking, “Gee whiz, what’s wrong with those parents?  Don’t they pay attention to their kids?”   That would be the moment the Karma Police jotted my name in their book.

So I stood in the middle of the road screaming from a place I did not know existed in my body… heart?… soul?….  And then, just as I was giving my address to the dispatcher, my husband yelled, “I found him!  I found him!”

Escaping and being a “runner” were not the only issues we were dealing with, not in the least.  Charlie’s other issues included:  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, sleep problems and severe hyperactivity.

With every “issue” my son exhibited, we were told to “not worry” by the pediatrician.  I was made to feel like an overprotective Mom with too much time on her hands.  Nothing could have been farther from the truth, because caring for my son was like working three full-time jobs at once.

As I said, I called the pediatrician many times with my concerns.  I was told diaper after diaper full of diarrhea was nothing to worry about.  I believed.  I was given prescription strength diaper rash cream to soothe my child’s raw skin and told everything was fine.  I believed.  I was told Charlie would grow out of his hyperactivity.  I believed.  I was told boys start to talk later than girls (never mind Charlie HAD been talking and LOST his words); but still,  I believed.  I was told, “If he’ll sit still long enough to read a book with you, it’s fine.”   I believed.  I stepped into my canoe and set sail on that river named DENIAL.  Here was a doctor telling me what I wanted to hear, it’s all good.  And in my desperation, I grasped on to the doctor’s assurances, stuck my head up my butt, and pretended everything was going to be fine.

In August of 2005, my mother and stepfather urged me to place Charlie in a preschool program so that he might get some socialization with children his own age.  I was unsure of how Charlie would do because he was so very hyperactive.  My stepfather said, “You’ll find out when you put him in there how he’ll do… you won’t know until you try.”

Charlie was just shy of four years old.  He had never been in any kind of daycare or preschool; heck, he was hardly ever away from me (for obvious reasons).  But, I knew my parents were right, Charlie needed to play with children his own age.  So I made the call and enrolled him in preschool.

On Charlie’s first day of school, I made the director of the preschool promise to call if anything happened, if she had any trouble with my son.  I sat by the phone.  I was so scared.  I just knew that phone was going to ring.  After all, I had a hard time controlling my son myself, I couldn’t imagine a complete stranger (who didn’t love my child with every ounce of her being) getting the job done.  But the phone didn’t ring all day.

I drove over to the preschool with a sense of pride and relief.  It had been years since I had felt even the slightest sense of those emotions, or had even exhaled completely for that matter.  I am sure you can imagine how I held tightly to the feelings I had on the drive over to the school… I wanted so badly to just feel these things every day, just like the other mothers.  I wanted to have no worries about my child, I wanted to “do lunch” or be able to concentrate on writing (or whatever other task needed my attention).  I wanted to be a member of their club.  I felt maybe I could, since the day had gone well.  Perhaps we had finally cracked the code with Charlie – all he needed was to socialize with kids his own age and be in a structured environment.

But, those feelings of relief were soon ripped from my heart, where I had been coveting them.  My temporary club membership was revoked and I knew I wouldn’t be living the (seemingly) carefree motherhood those other moms appeared to take for granted.  You see, when I walked through the doors to claim my child, I was greeted by a grim faced director.  She asked me to step into her office, where she explained to me how Charlie had had several huge, and “terrifying” tantrums. I could not process what she was saying to me because my son did not have tantrums.  Until that day, he was a fairly quiet and good mannered child; uber hyper, but quiet and good mannered.  After that day the terrifying tantrums occurred multiple times daily, and to this day I believe the stress of preschool triggered Charlie’s tantrums.

The director then asked me to follow her down to Charlie’s classroom, where I was told to look at my child.  What I saw knocked the wind out of me, there was my son screaming (as if someone had cut his arm off), and hitting himself.  My initial reaction was to run to him, to swoop him up in my arms, and to take him away from whatever was upsetting him.  As I started toward the door, my mother, noticing my distress, touched my arm and said, “Let me go.  You’re too upset… it might make it worse.”

I nodded numbly and watched as she walked into the room and attempted to get my son’s attention, to no avail.  She spoke gently to him, “Charlie? It’s okay buddy.  Calm down… it’s Granny… Charlie?  Charlie?”  She touched his arm, face, back… nothing, no reaction to her presence at all.  Charlie continued to scream and appeared to be in a state of shock.  If a person could have an out-of-body experience, my son was experiencing one for sure.  My mother finally just grabbed Charlie and sat on the floor, holding him tightly to her, and rocking him back and forth until he calmed down.  When the tantrum had passed, Charlie stared at my mother with a puzzled look, as if to say, “How did you get here?  When did you get here?”  He then smiled and proceded to act as if he had not just been screaming at the top of his lungs and hitting himself.

The director suggested we try a half day on day two.  Charlie made it two hours before the school called and asked me to come get him – their reason, “He is a danger to himself and others.”  When I arrived this time the director asked for my permission to have Charlie evaluated by the staff counselor (who was also a child psychologist).  I agreed.

Day three of preschool for my son lasted all of one hour, just long enough for the evaluation to be completed.  The director called and again, I met her in her office.  She explained that the school was not equipped to care for a child with my son’s problems.  She handed me the evaluation and suggested I call the pediatrician immediately to get a referral for a more thorough evaluation.  She then handed me a refund check and said, “Good luck.”

I walked out to the car with my son, where my mother was waiting.  I handed her the evaluation as I buckled Charlie into his seat.  My mother read aloud what the evaluator had written.

When she was done I said, “What does all of that mean Mom?  What do they mean no eye contact, won’t socialize, not interested in others?”  My mom said, “I think they are saying autism… without saying autism.”  I said, “Autism? What?!?  Charlie doesn’t have autism… he’s not like Rain Man…”

Charlie was diagnosed with autism several months later, just after his fourth birthday.

On the drive back from the doctor’s office, after hearing the diagnosis, I cried.  I blamed myself.  It was all my fault.  You see, the year leading up to Charlie’s diagnosis I would lay in bed at night and whisper to my husband, “Something is wrong with Charlie, something is terribly wrong.”  Looking back, I suppose I whispered because of my fear.  To say these words out loud would make them true.  So I whispered them and prayed the Universe would not hear.  I grasped on to each time someone told me Charlie would be fine, that he would grow out of his problems, that he was just a little hyper, and wasn’t that normal for boys?

That night my husband and I huddled together with his laptop and Googled “autism.”  There was so much information to read, too much really.  It was all so overwhelming and we had no idea where to start.  We decided to narrow the search and Googled “autism Cordova TN.”  The first hit to come up was for a local autism treatment center, The Autism Solution Center.  I called the next day and signed up for every workshop they offered, all of which were free of charge.

After sitting through the workshops, my husband and I felt something we hadn’t felt for many years… hope.  What we heard made sense, our child was sick.  We immediately signed up to see the DAN! doctor the center provided (again, free).  The doctor ran some basic tests, told us to start the GFCF diet, and gave us direction of which vitamins and supplements would help our son.

We started with pulling casein from Charlie’s 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 implemented some basic biomedical treatments, and with each treatment, Charlie leapt forward in his recovery.

The more I read about what other parents healing their children with “autism” were doing, the more I believed my child would get better.  And the more I researched and learned about what was really going on with my son, the more I began to believe my child did not have classic “autism,” but, vaccine induced autism (which means his body is sick and causes him to have autistic-like behaviors).  I became (as my mother says) a mom on a mission.  I was singly focused and driven towards the goal of bringing my child back to me and out of the miserable world in which he was living.

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 past three years, 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 complained 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 would ask 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.  Vaccine induced autism, that is.

Charlie has struggled valiantly to free himself from the claws of his 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.

This entry was posted on Saturday, October 4th, 2008 at 6:28 am and is filed under AAP, Age of Autism, Allergies, Autism Research Institute (ARI), BioMed, CDC, Charlie's World, DAN!, Diet, Dr. Krigsman, Dr. Wakefield, Evidence of Harm, FDA, Green Our Vaccines Rally DC 2008, Inspiration, Kim Stagliano, My Mother, Nutrition, Thoughtful House, Vent, autism, gut-brain connection, school, therapy, treatment, updates, vaccines. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.