‘His skin crawls, he can’t communicate, and he never sleeps. I was going to ‘fix’ my son, it would not win.’: Mom of Autistic son details acceptance of his diagnosis; ‘I’m proud of him’

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“My mother died a month before my son was diagnosed with autism. It was one of the darkest times of my life. His daddy and I knew the diagnosis was coming. We recognized the signs. I researched like a hungry lion stalking her prey. But you can’t really prepare for something that changes your life so completely as seeing Autism Spectrum Disorder typed into words, just weeks after losing a parent.

Willie was two with no functional language, no desire to communicate, no eye contact, and sleep problems. He preferred to be naked, had a short list of foods he would eat, and had a significant motor delay. He was also adorable — my little, blonde baby with the vacant smile who loved blankets, pillows, and balloons.

I remember his daddy, Jacob, and I, driving up to the doctor’s office — the big green shrubs, the second floor elevator doors. I remember arguing with the receptionist that the doctor who was seeing us was driving in specifically for the appointment. I remember the blue walls covered with clouds and zoo animals. And the crinkle of paper as I struggled to keep my squealing boy happy between opening and shutting drawers. I was numb, only back to my new reality for three weeks, and watching it all through a fuzzy lens.

Once you enter the world of evaluations and diagnoses, you realize each of these doctors is just giving you their best guess at the future. Most of them have no idea what it’s like to live with a child whose very skin crawls 24 hours a day, who can’t communicate, and never sleeps. The doctor talked at him for a brief window of time. He asked him to feed the tiny purple bear. He saw him struggle and blink his eyes over and over. Then, he sent us on our way, shiny piece of paper in hand.

For months, I isolated myself and refused to leave the apartment. I canceled therapies, stopped cleaning and cooking, sobbed, and threw things. When I finally emerged from the fog, I found a new purpose. Somewhere inside him was my handsome, little boy. I was going to find him. He deserved the best of me, and I was determined to deliver. I didn’t know what the future held, but I was going to do everything in my power to ‘fix’ my son. Autism would not win. I was in charge.

Except I wasn’t. I needed something bigger than myself to force me out of the sheets each morning. There was no instruction manual, no parenting technique for a child with extraordinary needs. I refused to let myself even consider the unknown future. I grieved; each day brought something he couldn’t but should be able to do.

One morning, he was playing on the rug, cradling a carton of eggs — he often stole them and lined them up. For the first time, I saw him. I had a choice. I could continue to cry for everything he wouldn’t do in his life and my lack of control over it, or I could love him exactly where he was. My amazing, little, blue-eyed boy had not disappeared. He was right in front of me, and I was making a new choice to love him exactly as he is.

It has been a different life than I originally imagined — sleepless nights, regressions, meltdowns, thousands of hours spent worrying about the future. But looking back, I realize he saved me. Raising that boy has shown me more about unconditional love, service, and sacrifice than I’m sure any other experience ever will. I wish I could have told myself then, although I could not see the staircase, the future would be full of love, snuggles, and something I’d only dreamed of, hearing the words: ‘I love you, too. ’

Willie turned ten last week, and he is so happy in his life. He likes McDonald’s cheeseburgers, french fries, and Dr. Pepper. He likes strawberry pop-tarts, pancakes, and chocolate ice cream. He makes toast and is learning to use the microwave. He tells jokes about interrupting cows and three humped camels. He snorkels in our pool and tells me how to reduce, reuse, and recycle. He builds cities from his collection of Paw Patrol toys, helps his Daddy check the garden, and eats ‘red chips’ with his Pipaw. He draws, glues, cuts, and tapes flyboats and creature power-vest together. He would spend every single day at the Tennessee Aquarium talking about humuhumunukunukuapua’a, penguins, and sea anemone.

I could have missed it all and let the bitter outweigh the sweet. I could have held on to the expectations of normal and let it slip, like sand through my fingers. He’s in the kitchen right now, heating up two hot dogs with ketchup and putting three handfuls of BBQ chips ‘on the side,’ as he says. I’m proud of the young man he is becoming and the work he put in to getting here. I’m proud of his curious mind and the questions he asks. I’m proud of him.

Sure, I could focus on his struggles with ‘normal’ interactions, his academic progress, or the foggy, undetermined future after I’m gone. Instead, I choose to see the beauty in counting in threes and searching for creatures who live free and in the wild. I choose to sound out Isanosaurus and watch Dora, snuggled under a worn Car’s blanket. I choose to abandon society’s definition of success. I choose to see him.”

Courtesy of Tabetha Burgin

This story was submitted to Love What Matters by Tabetha Burgin. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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