Sunday, October 05, 2008

Charlie_nowJeanne Cantkier blogged this story at her site Charlie in Wonderland. I asked her if she'd share it with my Age of Autism readers. And I wanted to share it here too. 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.
Charlie_001



Charlie_sadFor 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.

4 comments:

Anonymous said...

Jeanne and Charlie's story is very similar to ours. Our son is four and asks more questions about his diet and progress each week. I know parents of older children with mild spectrum issues who simply left the explanation at you have learning disabilities. The DAN protocol although manageable does involve a lot of work and, depending on each child's circumstances, explanation. Not to mention that our kids truly are the warriors - hours of therapy and, at least in our case, taking tons of supplements and living with a limited diet with very little complaint. That essay would make a wonderful outline for a children's book that explains and celebrates our kids efforts to recover from autism. Perhaps there is one out there but I haven't seen it.
Gail

Kathryn said...

Wow. I live for the day my son can actually tell me what he is feeling, what it "was like."

GFCF Mommy said...

It's interesting to hear Charlie describe how he feels. My son, now 6, also remembers his pre-verbal days and now that he is verbal, will often tell me about things that happened when he was not verbal with stunning clarity.

Rather than talking about his brain holding him back, my son will often say,"my body is telling my brain to do the wrong thing." This is his own description, he didn't get it from us.

He gets extremely frustrated when this happens, but I am so grateful and blessed that he can now "use his words" and he tends to be very metaphorical at times--often his creative use of mixing echolalia with his own spontaneous speech.

My son also remembers a very bad gluten reaction he had and how sick he got. Now we have no issues of compliance with him, since he doesn't want to be sick again. He will even ask,"is this good for me?" I know we are very lucky, incredibly so, that he responded this way. I know not all children do.

It's true, our kids are totally aware, just need the right combination of medical and therapeutic treatments to free them.

Thank you for sharing this.

Katherine

A Family said...

This is a great piece! I love it. Keep sharing!