Autism: The Club No Parent Wants to Be In

During my childhood, I tried every type of activity imaginable, but never seemed to find “my thing.”

I tried soccer, but getting kicked in the shin wasn’t worth the lack of thrill I felt when someone else kicked a ball through the goal.

I tried softball, but somehow standing in the outfield and ending up covered in fire ants took away any joy when one of my teammates slid into home plate.

Acting was worth a shot, but it turned out to be quite boring when I said my one line, “I like porridge too,” and then had to sit around watching others act for another hour and a half.

The dancing in drill team was sometimes fun, but even being with my friends at something they were good at wasn’t worth listening to the screechy voice of the drill team instructor.

Despite my inability to be a team player, I grew up with a strong “can do” attitude. I was a firm believer that with enough will power and hard work, I could overcome anything.  The power of positive thinking could and would beat the odds of whatever was put in front of me. And then I met Autism.

At eighteen-months old, my daughter Lizzie did not have any language. I wasn’t worried because I was sure that I just needed to spend more time with her. I knew with enough effort, I could get her to start talking.

One afternoon, we walked across the street to the neighborhood pond. I had all day, and I was determined to make Lizzie talk. This little girl did not realize how stubborn her momma was, and we were not leaving that pond until she said, “Duck.”

My plan was brilliant! I was going to command her full attention. We would break the simple word “duck” down into even simpler parts, and I was prepared to wait her out.  I would bribe her with treats, withhold her favorite toys and do whatever it took to make the talking happen. Yes, this was a great plan, and wouldn’t it be a great story to tell at her wedding someday?

Me:  “Okay Lizzie. Today you are going to talk. Listen up, because all I am asking is for one simple word out of your mouth.  Lizzie, say duck. Say duck, Lizzie.”

Lizzie:   Silence

Me:  “Okay. Okay. Maybe I am rushing you a bit. First, let’s just look at the ducks.  Lizzie, look at the ducks. Lizzie! Lizzie! Over here, just look at the ducks! Lizzie, what is so interesting about the grass? Why won’t you look up?”

Lizzie:  Silence

Me:  “No problem. You don’t have to look at the duck to say duck. In fact, let’s just start with the d-d-d sound. Lizzie, say d-d-d.”

Lizzie:  Silence

Me:  “Lizzie, say d-d-d. Come on, you can do it. Say d-d-d.”

Lizzie:  Silence

As you can imagine, this went on for quite some time. Not only did Lizzie fail to say duck or even d-d-d, she never even looked up at me or the ducks. Not even once. She fully concentrated on picking grass the entire time we were at the pond.

Finally, with tears streaming down my face, this stubborn momma gave her daughter a kiss on the head and told her we would figure this out. I packed it in, headed home and realized for the first time in my life, I was given something I could not tackle on my own. I hesitantly picked up the phone to call early childhood intervention to ask for help, and they led me to a local autism support group.

This support group was full of strong, smart moms who were working together to help their children against all the odds. I began to work with them researching all the best available treatments for my daughter. I loved their energy and ability to share ideas, even as they dealt with the crippling emotions of their own children’s struggles. As my daughter began to progress, I had a new desire to give every ounce of freed up energy to other parents who were just a few steps behind me in this journey.

I met with parents one-on-one, shared the available treatments with them, showed videos of how my daughter had progressed, and helped them shape programs for their children. Our meetings often ended up on a hopeful note, and I knew I wanted to do more.

With a local non-profit, I began planning Mom’s Nights Out which allowed autism moms to meet and support each other in their journey. As I looked around the room at these events, I was overwhelmed with the strength and the hope we collaboratively possessed. Beautiful women from all different walks of life brought together in the same struggle. It didn’t matter if she was on drill team, in theater or great at sports in her past. It didn’t matter her skin color, financial status or politics. Every mom in the room had heard, “Your child has autism.” Every mom in the room had been devastated by these words, and now every mom had the ability to help another because she had gone through something difficult that others needed guidance with.

None of us would have chosen this crazy, windy road that is often painful, but experiencing life together with such strong team players is invigorating! Because of autism, I joined the club that nobody wants to be in, but ended up finding exactly where I belonged.

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For stories that will bring you big picture perspective in the midst of your everyday struggles, subscribe to the United in Autism blog HERE.

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Julie Hornok is an award-winning author, inspirational speaker, and advocate for autism. She started the non-profit, United in Autism, to bring hope to autism moms through emotional support events. Her first book, United in Autism: Finding Strength Inside the Spectrum (foreword by Temple Grandin) is available at UnitedinAutism.com or Amazon. Join her United in Autism Facebook Community for daily support. UnitedinAutism.com

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