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I would be a world traveler. I was 16.I stood with my fellow classmates and exchange students in Berlin. but I had the idea that I wasn’t done. people like me. of cars. chiseling pieces of brick and mortar. I would leave my mark on the world. some of it was just pictures. 1|Page . Some of it was in German. with a heady sense that I had been part of something. one tiny chunk at a time. full of dreams. I would help the poor. that I wanted to make more. I would build sky scrapers. of flags. bringing down the wall. It was covered in graffiti. filling my pockets with pieces of stone. I handed out pieces of the Wall to my friends. I was changing the world. my family. heal the sick. made history. of people both famous and not. Back home. a lot was in English.
And then I'm gonna build things. This. this rush of love. even after all of that. I travelled the world." My aspirations. I certainly felt closer to being irreplaceable than I ever had before. I felt a little like someone else could come along.. I’d been to Italy.The next Christmas. Italy. George Bailey’s words took on a new urgency: "I'm shakin' the dust of this crummy little town off my feet and I'm gonna see the world. 5 pounds and 15 ounces of sweet baby Caroline came into the world. I'm comin' back here to go to college and see what they know. this love like no other. I'm gonna build bridges a mile long. was this what I had been searching for all along? 2|Page .. as the night sky softens just before dawn. the Parthenon. the Colosseum. and I began to wonder. I’d been looking high and low for meaning in my life. the way they can only be when you’re 16 and the whole world is laid out before you. I want to do something big and something important. like George's. And yet. Then. I still hadn’t truly found it. This time. I'm gonna build airfields. this primal connection. And above all else. Was it possible that she was my purpose? Nursing this tiny creature in the small hours. I didn’t feel like I’d made my mark. on a sultry night in June. I wanted to be someone. I went to law school. though. Tahiti and the Colosseum. do what I was doing— and just replace me. were as big as they come. I went to college and designed expansive bridges and towering buildings. And then. Paris. I'm gonna build skyscrapers a hundred stories high.” a movie I’d seen a million times. Greece. Someone irreplaceable. I remember watching “It’s a Wonderful Life. Someone unique.
She lost interest in other people. Caroline was 12 months when she stopped speaking. Or worse. the ones they hit. when she started avoiding eye contact. and you can see the pain flash across their face. though. resulted in tantrums so severe we’d return home and not leave again until the next day.” people would say when they couldn’t engage her. and they might think of sitting up or walking. say. and then lost. Or that they need to return a library book. She began to demand a sameness in our routine that became debilitating.--------------Say the word “milestone” to many parents. thinking about the milestones their children never hit—the ones that meant there was something wrong. irritable. She became unhappy. introverted. Say the word to an autism parent. Leaving the house without her toy rubber duck. and then their thoughts might drift to something else—what to make for dinner. “She must just be tired. 3|Page .
And suddenly. hours and hours during the day and into the night. This child didn’t even call me mama. I gave it all up— my job. Just fix her. everything fell away. I prayed. My passport hasn’t seen the light of day in six years. this was a different child. What had happened to the baby I’d fallen in love with? Where was she? Because this child. to whomever would listen. And where once she would have held out her arms to me.” I would sing to her every day. I just wanted my daughter back. trying to put the pieces of our daughter back together again. babbling her sweet baby sounds. Caroline. I’ll give it all up.I must have cried a million times. 4|Page . “Good morning. I’ll never ask for one thing more. my frequent flyer miles. We immersed her in therapy. now she wouldn’t even look at me. Whatever I was before this moment was gone. To God.
I tried and tried but couldn't bring her back to us. we sat down to watch "It's a Wonderful Life" again. Developmental. The holiday season. MMMMM. he prays: "Dear Father in heaven. “Mama. Broken. Physical. worn out from fighting an enemy that locked our daughter out of reach. she was farther and farther away.. “Come on. Taunted by Mr. always one of my favorite times of the year. had lost all luster.” Caroline still wouldn’t look at me. Mama. we were tired. I'm not a praying man..” She was in there somewhere. I watched the older. But with each passing day. I was right there beside him.” I would say. Show me the way out of autism. utterly defeated George. though. that bubbly baby I’d known." Completely forlorn. Or maybe it was me. 5|Page .Speech therapy. Speech again. but if you're up there and you can hear me [begins crying] show me the way. Occupational therapy. knowing just how he felt. At Christmastime the year we got her diagnosis. sweetie. Potter. Feeling he could do nothing right and all hope was lost. This year. I cried watching George try to paste the petals back on Zuzu’s flower. show me the way. Mama. praying on my knees. I had to find her. On his knees. “MMMMMMMMMM.
look back on my daughter’s life and wish I could have done more. I felt a galvanizing sense of energy. Diets. I was 16 again. snake oil. The worst thing I could do was nothing. those of us sitting in waiting rooms and searching the internet for something—anything—we could do. But it was worth a try. Here it was. Maybe it was alchemy. “There’s no cure.I didn't watch much of the movie after that. Treatments. 6|Page . a whisper traveling from parent to parent. I had a wall to tear down. Maybe it was a wild goose chase. And suddenly. I was cutting tags out of her clothes. “It’s not possible. eyes that used to dance with laughter. sparkle with life. and if that was our best option. But there was also a rustling. Answers.” I looked at my daughter. I decided to throw my lot in with the renegades offering ideas. “Early intervention is your best option. It was worth a try. there was no hope. There were rumors of recovery.” But early intervention wasn’t working. Hope.” her doctor said. “There is no cure.” they said over and over. More. Caroline’s doctors weren't any help. of hope. the light gone from her clear blue eyes. Special doctors who were bucking the system. something I learned made her so uncomfortable she would scream like a thousand fire ants were crawling up and down her body.
“Come to bed. Doctors interested in the gut.” I would answer. the strewn papers. I read every paper and article I could find. I was up well into the night. “One more page. long after my husband and daughter went to sleep. the same two factors kept appearing: vaccines and immunity. How could I sleep when the key to unlocking my daughter might be right here in front of me? And over and over. the empty fridge. There were doctors interested in immunity. 7|Page . I ignored the toy explosion.--------------I started to do some research.” my husband would mumble.
The one all the doctors told us wouldn't work. And the immunity? An immune disorder? We put our faith in science. It was! It was right there. more than a year after we lost her.” I’d say. well. I read until I understood. Mama. The science just isn’t there. I read until I saw the path—the one that would heal Caroline. and if her pediatrician wasn’t willing to research the answers. I was more than up to the task. We had to undo the damage that the viruses and the metals in the vaccines did to my baby. there was change. Unequivocally. We had to heal her. Vaccines.” she said. bubbly baby. omegas and more.” When it happened. finally. And then. There’s no way that vaccines caused this. Her pediatrician said no. after the 8|Page . There was more awareness. And immunity. Vaccines are safe. Mama. MMMMMMMM. my bright. “MMM. “MMMMM. We started a gluten and casein free diet. more engagement and attempts to speak! “MMMMMMMMMMM. Except that it was. But it did.Vaccines and immunity. We don’t know why. We began supplementing high doses of vitamins. one day. Autism just happens. until I could go toe-to-toe with any expert.
Yes it was. these things were impossible. I was crying and laughing at the same time.” she said. Did she have any idea what a miracle that one word was? It was so hard to know back then what she knew. and here I was crying over a simple “mama. though. And with it. wrapping her in my arms. --------------- 9|Page . anywhere. My friends’ children were asking “wh” questions.” it was Christmas. Mama. Oh yes. as we tried to penetrate her world.” I said to Caroline.light went out in her eyes. We hadn’t even begun to fight. Sweetie. It was my birthday. Caroline toddled back to her puzzle. It was the freaking Fourth of July. I rolled up my sleeves. Before we started trying to heal her. It was my chisel finding purchase in that wall. “Hi. “Mama. simple things like putting her in her car seat without a meltdown or a successful trip to. “I’m coming!" I exclaimed. I held her until she began to push me away. this breakthrough. Finding something that Caroline could eat was just too hard. well.” It was an energizing force. as I declined yet another lunch invitation. when she looked at me and said.” she said. “Hi. “Mama. began to happen. “Is that diet really worth it?” a friend asked me.
in addition to the endless therapies. every day. Yep. Where was that suitcase? We had begun a new diet for Caroline. All this in addition to the rest of it. The idea behind it is that complex carbohydrates cannot be easily digested by people with damaged guts. I wish I’d never heard of it. it’s completely grainless. The list goes on. there are no drive throughs. Many days. No sugar. no bread. from scratch. I would've stopped long ago. SCD for short. no prepackaged food of any kind. no restauants. panic seeping into the edges of my already frayed nerves. On planet SCD. causing a vicious cycle. I began preparing every single morsel of food she ate. The hyperbaric oxygen chamber to supply more oxygen to her brain and strengthen connections. since I learned about SCD. the research. balance can be restored and inflammation halted. the sleepless nights. it feels like we live on a different planet. more words and greater health. When friends tell me how at the end of a long day. All of the food is made at home. more smiles.I stood next to the baggage claim. no rice. It's a bigger task than it sounds really and if it wasn't responsible for more eye contact. If you starve out the bacteria. We decided it was worth a try. 10 | P a g e . an intensive regimen called the Specific Carbohydrate Diet. Believe it or not. Grainless! No corn. they just go through the McDonald’s drive-through. Those undigested carbs feed harmful bacteria and inflame the intestines. The mb-12 injections that improve her methylation cycle and bring us more language. So now. The diflucan to combat the yeast her immune system simply couldn't control.
there was only one way to remove them. It makes simply leaving the house a feat of planning and organization. But I didn’t care about any of those things. and at worst. To heal it we needed to remove the metals. Our local paper ran a series of articles about it.Special stews and vegetables. Chelation is controversial. According to my research. It wasn’t that suitcase I cared about. I pack snacks and meals and must be prepared in case we get stuck in traffic or a waiting room. Chelation. Going on vacation is madness.” And they were killing her immune system. Her levels showed that she was more than three times the amount considered “acceptable. say or living in an industrial city. Tests showed she had elevated levels of metals in her system. I’d packed my new tankini with the flattering side rutching. --------------We knew Caroline’s challenges couldn't be healed with food alone. 11 | P a g e . The one full of food. It was the other one. Madness. calling it fraudulent at best. My jewelry. The average person has an amount of metal in their bodies just from living their lives—eating tuna. Unending parades of vegetables. downright dangerous. Her body was so busy fighting battles that she was unable to function as a typical child might. I became more and more agitated. So as I waited at the baggage claim at the Orlando airport for the suitcases. her Cinderella dress.
I wish she had to stay up all night to rid my daughter of the poison she injected.” People ask me all the time how I do it.m. How could I wake up in the night? How could I not? 12 | P a g e ..” I’d say. too. “The vaccines are safe. The wall was coming down. “I’m awake. the alarm clanging next to my bed at midnight. it requires dosing every three hours for three consecutive days each week. Because it's so gentle. “Thought you should be too. she was placed in a general-education classroom. on the endless vitamin and supplement regime. The chelation method we chose is low dose and oral. The one at 6 a. the more and more I knew it was a clear choice. She was speaking better. And again at 3 a. in the gray light of dawn after a sleepless night. How I have the energy to blow-dry my hair.” she said.m. Caroline was making steady gains on SCD. She had better eye contact and social interaction. often reminds me of the flu shot I was told I needed when I was pregnant. When Caroline started kindergarten last fall after being on the chelation regimen for 40 weeks.. one piece at a time. the more specialists I talked to. if my daughter’s ex-physician is awake. I sometimes wonder.But the more I read. she was calmer. on mb-12. No way was I going to stop now. How I stay up on the latest research. TWO YEARS! So every weekend we follow the protocol.. the one containing mercury. I’d love to call her. for two years. How I wake up in the night like I did with newborn Caroline.
It’s the other parents who become your support.” is the party line. and have a nice day. it would be impossible to continue without the parent network.--------------When your child is diagnosed with autism. Sorry. she's likely to know more. where your kid melts down at the grocery store or reverts to that inward state. you are really left to fend for yourself. Is your doctor able to tell you why your child is regressing? No? Ask the lady sitting next to you at the speech therapy appointment. That’s because they believe there is no cure. but not autism. Your pediatrician treats ear infections and strep throat. There’s no pill for autism. “There is no cure. There’s a pill for strep. 13 | P a g e . Those days where you have a setback.
regression. Her need to 14 | P a g e . Another autoimmune disease. obsessive compulsive behaviors. Words like inflammation and basal ganglia damage are hard to swallow. staying up until the wee hours of night. one step back (and sometimes three steps back) is too often a reality in this game." they told me. PANDAS. Behaviors we’d left in the dust were back and much worse. an autoimmune reaction to bacteria creates antibodies that attack the brain. But this time I had friends as sounding boards. "You found your way once and will find it again. Not only did this supportive bunch boost my morale. the parent network has often led to treatments we would never have come across had we been going it alone. I was devastated. So there I was. They reminded me that healing does not occur in a straight line. Isn't that everything?! Caroline was hit hard by every aspect of PANDAS and her obsessive behaviors made everyday life beyond challenging. researching again. they helped guide me to an additional diagnosis. How can we be going backwards? My fellow autism parents jumped to the rescue. learning. One such time happened last year when Caroline faced a sudden onset of tics. What should we do? How do we get started and what to expect? I learned that with PANDAS. the sleep/wake cycle and cognitive and emotional functions. Even worse. Two steps forward. behaviors. Attack the brain? Sounds awful. rigidity. We’d fought so hard. the areas controlled by those "ganglia" are motor control.Along our journey.
the PANDAS symptoms were nearly gone. But. panic stricken meltdowns. That same friend also steadfastly stood by my side as I ditched the prescription antibiotics and lined up the herbs. I had to trust the parents. Perhaps the intensity of the tics or the doctor's warning of how serious PANDAS can be.that we needed to stop the antibiotics and try natural treatments. teeth brushing. "Back to baseline" never felt like more of a victory. But we had no choice.complete an exact order of events before every single routine (eating. Within a week. At first I couldn’t believe she was serious. The same gut we were so intent on healing. They had been through it and knew firsthand. getting dressed) made getting anywhere on time a rare occurrence. it’s ability to deliver “mild IVIG” benefits. And anything not done in the right certain order or not lined up perfectly or tapped the precise number of times resulted in sheer. I still even had the tendency to turn to mainstream medicine. After weighing it in my mind. I was afraid natural treatments wouldn't be enough and we'd lose the gains we saw with antibiotics. Ironic. made things scarier. of course that after all we'd been through. They possessed something the doctors didn't have. the antibiotics were harming her gut. I'll admit. I'll be forever in debt to one such friend who clued me in to the miraculous healing properties of camel milk. We listened to the PANDAS experts and started her on rounds of antibiotics. It was then that I determined – with help from other parents . makes it ideal for PANDAS kids. The tics calmed but were never completely gone. 15 | P a g e . Real life experience.
I get heartbreaking e-mails all the time from people new to autism. Tear down that wall. “That happened to us and here’s what worked. They come to me with their own dreams rearranged in the face of what feels like a devastating diagnosis. I know I'm making a difference. Caroline's healing story. Go get ‘em. but I am also so very. We now have followers from all corners of the earth. There was a time I wanted to travel the world. no matter how small.And never did I feel so. so sorry to open another email and find out that another child is sick. it was just so we could record her challenges. the treatments we’ve tried. I hand them their own chisel. We talk openly of the challenges we’ve faced. and sometimes. Helping ensure that other parents have an easier time getting started on their child's road to recovery is something I do every day.” I’ll say. the world comes to us. and I gave up that idea to heal my daughter. Now.. is giving hope to many. I am always so. through our story. A real difference in her world. very grateful for the chance to reach out to them and help. And it’s the beginning of their own journey. although not yet complete. --------------- When Caroline began healing. At first. I think. irreplaceable! With each gain.. --------------16 | P a g e . The video led to a website. I created a video chronicling her progress. to channel our frustration in the face of all of these burdens heaped on an innocent little girl. the first time they’ve felt hope in some time. and then a blog.
like he missed out on his dreams. It’s interesting to me how I relate to it differently as I live my own life. My dreams of leaving a mark on this world have come true. But dreams change. and more ambitious. I’m healing a child with autism. A girl who's recovering from autism.I had this idea long ago about the kind of mark I wanted to leave on this world. Instead. something that would touch the sky. I still watch “It’s a Wonderful Life” every Christmas. Life is messy and complicated. I'm somebody very important indeed. I felt sorry for George. I’ve done something much. much harder. 17 | P a g e . like he settled. and also wonderful. I'm Caroline’s mom. Plans change. I wanted to build something grand. Before Caroline’s diagnosis.
regardingcaroline. The message that there’s always hope is a pervasive theme in her articles. she’s helping other parents in the community heal their children. www. April 2012 Originally published as e-book: www.This e-book is dedicated to parents everywhere fighting for their children and one stone at a time. When she isn’t blogging or researching. Journey to Recovery Videos.regardingcaroline.com/doc/91473446 www. --------------- Rebecca Ferguson authors the website Regarding Caroline.scribd. Facebook: Regarding Caroline Twitter: @regcaroline Click to subscribe to blog updates via email --------------- Copyright © 2012 Regarding Caroline All rights reserved. Blog posts and more.com for Caroline’s Story. Printed in the United States of America AvantBooks | First Printing.com 18 | P a g e . This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the author. changing the world.
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