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Why I Walk: For Cameron, my heart

This post was written by Cheryl Honeycutt, who has a great grandson with autism. She walks for the Autism Speaks Walk in Georgia. Why do you walk for Autism Speaks? Share your story with iwalkfor@gmail.com and we might feature it on our website!

The other day someone asked me why I support the walk for Autism Speaks. To understand my motivation, one would have to know my heart and the autistic child who fills it. For his sake, in his name, I will cross any ocean, climb any mountain, reach outside my comfort zone and write things, say things, do things and yes! I will walk from here to Timbuktu in a sparkly tinsel wig and blue tutu if it helps those who help him and others like him. He is my heart and this is his story.

Cameron was a quiet baby. A wee cherub face with intense eyes that seemed to look past you. We often mused that he must be watching the angels around him. He was the perfect child. Seldom cried. Would lay in his crib and study the world around him with little interest in the goings on of us mere mortals.

As he got older, his behavior became more atypical. He rarely made eye contact or engaged in the usual toddler games. He didn't play with toys like other children his age. He would line his up, end to end or simply throw them in the air for hours. He would hold his hand next to his face, then look at things with an intense side ward gaze.  

He didn't acknowledge anyone's presence or answer to his name. Often we would have to physically touch him to get his attention. We were sure he had hearing problems but testing at Children's Healthcare of Atlanta showed his hearing was fine. He was in a world of his own and we had no idea how to reach him. I was terrified as I watched him slip farther and farther away from us.

On November 26, 2013, we began to understand what was different about this precious child.

It started out like any other day. Cameron had a doctor's appointment for his 2 year check up. The nurse gave me a questionnaire called the Modified Checklist for Autism in Toddlers, better known as the M-CHAT. Out of 20 questions, Cameron failed 19. A new word entered our vocabulary: Autism. 

Many in our family took the position of denial. “Cameron is just a late bloomer.” “Many kids his age have quirks.” “He is just a picky eater.” “He won't always walk on his tiptoes.” “He doesn't look into your eyes because he's shy.” “He is just having tantrums because he is spoiled.” And the worst, “He doesn't look autistic!” as though autistic kids have a tattoo on their forehead or something equally obvious. It was all I could do to keep from saying “Wow! You don't look ignorant!” 

Autism has given me more patience and tolerance than I used to have. I am still learning that educating others about autism is more important than my overwhelming desire to punch the uniformed when they say something ridiculous or hurtful.Yes, autism is a learning process for all of us.

It has been 2 years since that fateful day. Our metamorphosis began when we downloaded the 100 Day Kit for Newly Diagnosed  Families of Young Children from the Autism Speaks website. We became Cameron's advocates. Our trepidation became rabid determination.

We were also fortunate to have been referred to Marcus Autism Center. When Cameron participated in the eye tracking study at Marcus, he was given a comprehensive examination to formally confirm what our pediatrician suspected and we already accepted. Once he had an official diagnosis, doors began to open for him. 

In late 2014, Cam underwent the 8 week intensive feeding program at Marcus Autism Center.  In 2 months he replaced the one food he would eat with balanced meals of 16 different foods. His behavior improved. His health improved. Happier and healthier! Who could ask for more? 

Cameron still wasn't verbal. Yes, he was great at labeling and he loved to repeat the lines from Finding Nemo, but if you asked him a question, he looked as though you were speaking a foreign language. He could count to 100, could identify 88 colors but he couldn't tell you if he was cold or hungry or thirsty. 

Marcus to the rescue again! Cam was enrolled in their Language and Learning Center in April of 2015. In a few short weeks, he was putting 2 words together. “Open door” was music to our ears. “Open the door” was a symphony. “Open the door, please” was a choir of angels singing “Hosanna to the Highest!” His progress has been hard won, but the accomplished staff at Marcus has persevered...and so have we.

There are not enough words or hours in the day to express our family's heartfelt gratitude to Autism Speaks and Marcus Autism Center for all they have done for our little guy, our family and the world-wide autistic community. We are all forever in their debt. I don't want to imagine where we would be without them.

I tell those I meet that Cameron is my heart. I can't imagine taking a breath with out him. That is why I walk for Autism Speaks. I walk because walking is good for my heart. My doctor said so.

Help Cheryl reach her fundraising goal by donating here!

Why do you walk? Tell us at iwalkfor@gmail.com. Look to see if there is a walk in your area at autismspeakswalk.org!

 
 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.