A story about the beauty and peace one family has found as they navigate their son and brother’s autism diagnosis.
“Guh-BYYYYE, Garbage Truck!!! Guh-BYE!”
The sounds of these words play in my mind on a constant loop. A haunted memory, the last spoken words of a boy who once was…I close my eyes, willing myself to transport back in time, to look for signs or reasons that these words would disappear. The threat of tears forces them open again, and they dart to my Carter Lou, kneeling in front of the fireplace at 5:23 AM, awake after only a few hours of interrupted sleep.
He’s staring at the flames and drinking his smoothie, occasionally tapping the glass of the fireplace as he bounces up and down on his knees, and humming his monotone song. Thus begins my daily Id and Super-Ego internal conflict. “I should be interrupting him,” I think. “I need to be on the floor, playing with him, forcing him to interact with me. But he’s happy and content. He deserves to do his own thing, be who he is. Would you want to be interrupted from a quiet moment?”
I get up idly to get some coffee. He runs and follows me into the kitchen, hugging my leg. He begins to push me to the fridge, searching for something more to eat. I bend down so that I am eye-level, but he expertly looks every other way but into my eyes. “Buddy, you just had a pear and a smoothie. No more.” The frustrated screams start, as he continues to push and plead however he can for food. Here comes the internal debate again. “He’s communicating. He’s not using PECS (Picture Exchange Communication – exchanging pictures with us in an effort to communicate his needs and feelings) but he’s asking for food. It’s all he knows how to do… I’m just going to give it to him. I don’t want him to wake up the rest of the house.” “No, he’s learning to scream to get what he wants.” As I lean down again and try to reason with him, he grabs my neck and looks right in my eyes, planting a kiss right on my lips.
That kiss… I had longed for that kiss for so long. You see, Carter has autism. Contrary to what some professionals have told us, he was not born with autism. He developed typically, meeting his milestones, speaking, dancing, laughing, and playing with his older brother. Sometime around 20 months of age, we noticed a peak in his language development, and then slowly, and so painfully for his family who loves him, and frustratingly so for him, he regressed into his own world. He stopped communicating verbally, he stopped pointing, and he stopped engaging in our world. It took 9 long months, but Carter was eventually diagnosed with moderate to severe autism spectrum disorder shortly before Christmas in 2015, just 3 months shy of his third birthday. We have no idea why and have no idea what caused this regression. What we do know is that the nature of his autism symptoms are a regression, meaning that he makes progress, but then that progress gets put to the back burners of his mind. One of the many things that had been lost in his initial regression was the affection he had for us… his hugs and kisses had disappeared.
I would be lying if I didn’t admit that I’ve experienced intense sadness, pain, anger, fear, and anxiety throughout his regression and diagnosis. I’ve felt grief when my oldest, at only four years old, sobbed while telling me he didn’t understand why he couldn’t make his brother laugh anymore, or why he wouldn’t play with him. I’ve felt guilt while praising my 18-month-old daughter for all of the words she can say because she’s surpassed his communication skills. I’ve felt fear worrying the same regressions will plague her. I worry constantly, mostly about things I may have never been aware of had one of my own children never had special needs.
However, in spite of my grief and worry, the past year has brought with it unexpected beauty and peace. I have become acutely aware of the grace, compassion, kindness, and selflessness that exists abundantly in this world. Our family has had the honor of being connected with the most selfless teachers, aides, practitioners and therapists who love and believe in Carter as deeply as we do. We’ve been surrounded and uplifted by family and friends who constantly check in with us, not just on Carter and how he is doing, but also on Landon, Sadie, and Jamal and I. I am not ignorant to the fact that there will continue to be ebbs and flows throughout this journey, but I’m also aware that such is life for everyone, no matter what their journey may be.
Carter has recently turned 4, and through many months of school, therapy and work at home, those kisses, and that affection for his family has returned. We see it in the way he hugs and kisses us and his siblings so intently. He looks into our eyes as if he’s watching to make sure we can really feel how deeply he loves each of us.
The month of April is dedicated to the awareness of autism. From one mama to the many others that I hope are reading, I implore you to continue to encourage your children’s compassion and acceptance… not just for others, but for themselves as well. We are all so different, but love is our greatest connector. As Carter grows, if the world and his peers can continue to show him total acceptance for the person he is that they do today, most of my worries will be in vain. When I believe he will be as loved as he is today, I know he will be ok.
“In a world where you can be anything, be kind.” ~ Unknown
Mallory Pettiford-Jones works from home full-time for a major health insurer, but her favorite roles are being a wife, mom to 3, daughter, sister, auntie and friend. She’s a self-described ‘hot mess mommy’ who has never met a fleece robe she didn’t love. This is Mallory’s first foray into publishing her writing, but she has found strength and support in sharing her family’s journey. You can follow their adventures on Instagram.