A Walk In My Shoes, by Easton Horne

On September 23rd, 2005, I became the youngest member of the Horne family - weighing in at a healthy 6 pounds and 15 ounces. During my first year of life, I was meeting all of my developmental milestones, and even exceeding many. By 11 months, I was not only walking on my own, but I was even running around. By 12 months I was saying my first words, such as “Skyler (my oldest brother)”, “Mama”, “Dada”, “Uh oh” and several others. My quick progression and normal life would abruptly come to a halt by the time I turned one and a half years old. At 18 months, I gradually began to lose my ability to communicate through words. I started to struggle to maintain eye contact with others. Suddenly, I stopped playing peek-a-boo with my family and no longer liked to be held like I used to. My parents and siblings were unsure why I was showing these changes in my behavior, so they sought medical help. After many doctor visits, lab tests and thoughtful deliberation, I was eventually given a diagnosis. That diagnosis was autism. Autism, also known as autism spectrum disorder or ASD, is a neurological and developmental disorder that causes significant social, communication and behavioral challenges. 

Back in 2007 when I received my diagnosis, there wasn’t nearly as much information and research about autism as there is today. At this time, I started with early medical interventions which included seeking out natural, helpful supplements and noninvasive treatments. My doctor suggested a biomedical approach that was very expensive and not covered by insurance. This biomedical treatment regimen included a hyperbaric oxygen chamber that I would lay in for an hour every week in order to increase the oxygen levels being distributed to my brain. I also underwent weekly chelation therapy, which required that I receive medication from an IV for several hours to remove toxins from my body. I also began a gluten-free diet, in hopes that this might help resolve my gastrointestinal issues. After 26 months of treatment and constant re-evaluation by doctors and medical professionals, it was determined that I had shown no signs of improvement. Even with all of these expensive, top-of-the-line biomedical treatments, I was still continuing to show signs of regression. My doctors continued to advise all sorts of therapies, including speech and occupational therapy. I would spend many hours of my day with various specialists who were all trying to help me succeed.

At 5 years old, I began my education at the same public school where my older siblings attended. However, by the age of 6, I could not remain in public school due to the many issues surrounding my condition. As a result, I was transferred to a private school that specializes in educating children with autism and those on the spectrum. At this point, I was still unable to speak, but I was working every day to find an effective way to communicate. At first, I tried to communicate with sign language, as well as the PECS system. PECS is short for “Picture Exchange Communication System”, which encouraged me to point at specific pictures in order to communicate my wants/needs. Even with this new system, I couldn’t fully express myself in a way that others understood me, and I became very frustrated. During this time, I was experiencing more and more behavioral issues. As a result of my frustration, I would often inflict self harm and engage in behaviors that were detrimental to myself. My doctors advised that I begin looking into certain medications to address some of these aggressive behaviors associated with autism.

During the next year, many different doctors suggested various medications. I took pill after pill of all different brands and types, but none of them seemed to make a difference. By the age of 7, my behaviors had gotten so severe that I had to be fully admitted to Phoenix Children's Hospital. I stayed at PCH for 3 months so that medical professionals could implement immediate changes to my medications and monitor my behaviors on a full-time basis. Even after finally being discharged, I would soon need to return to Phoenix Children’s for another hospitalization - this time lasting 4 months. I spent my 8th birthday on the behavioral unit floor. 

As those 4 months went by, my cardiologist became increasingly concerned that I may develop a life-threatening heart rhythm disorder due to the many medications I was on and their reactions with one another. While he did his best to balance and adjust my medications, I began to experience a myriad of unwanted and adverse side effects. It felt like we were trying to solve a giant puzzle, but none of the pieces would connect. After months of experimenting with different drug combinations, the hospitalists were unable to do anything more to help my deteriorating condition. As a result, I was referred to a neuro-rehabilitation center in Austin, Texas to receive specialized behavioral care and treatment. My parents and siblings were not able to stay with me at my new facility in Texas, but one of them made sure to fly in from Arizona and visit me every weekend. 

That Christmas, my family decided that their Christmas present would be to fly from Arizona to Texas to visit me. It was the hardest thing to be away from my family, but the doctors assured them that this neuro-rehabilitation center would be the best place for me to progress and be able to move forward. I was able to return home to Arizona the following December after a whole year of treatment. At the center, I learned how to complete simple tasks such as eating with a fork, dressing myself, and using a communication program. I was also able to work with many speech and language therapists, but I still could not communicate with words and faced daily struggles because of it.

Now, I am 16 years old and living at home with my family. I have a whole team of technicians that help me with my daily tasks and we have a lot of fun together. You can find me in the backseat of my mom’s suburban jamming out to Taylor Swift, or in my room watching my favorite movies like Toy Story and Monsters, Inc. I will never say no to chicken nuggets from Chick-fil-A, and there is nothing that beats an ice cold coke from McDonald’s. Although I have come a long way, I still get very frustrated that I am unable to communicate with words, and I still have a lot of behaviors that I am trying to overcome. It can be difficult to live in a world that others do not fully understand, but I find happiness in being surrounded by my family and friends who love me more than anything. I know that with their help, I will find my way. I will never give up. 

True love needs no words.  

Easton Horne