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In Their Own Words – The Only Thing I Worry About

July 8, 2010 19 comments

This “In Their Own Words” essay was submitted by Loary Bartlett of Owensboro, Ky.

My son Zakk was just diagnosed this May with PDD-NOS, high functioning autism, but the story does not stop there. It began in December 2005, when my mom and I recognized that my son was beginning to lose his balance and his eyes were dancing in his head. Immediately, my husband and I took him to the local pediatrician’s office, who referred us to the children’s hospital in Louisville, Kentucky, where they treat this kind of stuff. We had no idea what we were going to endure for the next four years of our lives.

It turned out that Zakk had cancer, neuroblastoma, in his pelvic area and a condition called OMS (opsoclonus myoclonus). OMS is a rare neurological disease which includes symptoms like dancing eyes, jerking muscles, loss of balance, loss of gross motor skills and loss of speech. To this day, my son has not regained speech. We have been told by the doctor that if he does not retrieve it by the time he is seven, he will never talk. May of this year, he was finally diagnosed with high functioning autism.

You’re probably wondering, how in the heck has my family survived? Sometimes I wonder that myself, but with help from family and friends and a open mind about what is happening in our lives, we are able to keep our heads above water, barely. The one thing I keep telling myself is, DO NOT QUIT fighting for Zakk; he is a wonderful boy and when you meet him, you can see that in his smile. As long as Zakk is smiling and laughing, I am happy, and that is the only thing that I worry about.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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