Journey Spotlight: Autism Awareness Month
One mother's experience in her own WORDs:
"Every turn from the moment he received the diagnosis seemed like an epic battle. Fighting for therapy coverage, jockeying for a “good” school placement, baffling over why state and federal disability services were frozen, and pouring over information about this complex disorder. What did Autism, this unexpected journey, mean for Arthur and our family?
I also grappled with my own grief and white-hot fear about my young child’s future. It is impossible to prognoses outcomes for autism at age 2. At age 18, would my son be able to tie his show or drive a car? Would he ever talk? Would he have friends, enjoy a good book, have meaningful work, or marry? Not being able to dream about the most basic aspirations for my child was agonizing…and it forced me to ponder the importance of surrender and acceptance.
Even before I had children, I knew parenting might mean I’d still be in my bathrobe at 2:00 PM reeling from a morning of fussy baby, poopy diapers, and sleep deprivation. How would this approach work now that I had a kid with autism? The diagnosis turned our lives upside down. Navigating the recommended therapies and interventions was baffling. Vital services were not available or denied. Battling seemed like the only option to get anything done for him. It was impossible to feel calm or surrender to anything. I was in a constant state of urgency. I was shaking my fists, stomping my feet, rattling cages, pressing 0, and taking names.
Intellectually I knew it made sense to find peace in the face of so many unknowns. Why break myself against what I can’t change or control? And all the while, my precious kid simply needs me to love and enjoy him right now—for who he is. I knew I’d be happier if I just let go of my tight grip. Unfortunately, you can’t just wave a magic wand and will surrender to just happen. Therefore, I began my quest to accept what I could not change. I read books with titles like, Go to the Places that Scare You and Comfortable with Uncertainty. I soaked up what I could learn from other parents and autistic adults who could share their experiences. I was beginning to see that the peace that comes with surrender. It surfaces with time and deliberate attention, as the result of a long and reflective process, and some very hard work.
Acceptance does not mean less work or halting efforts to help my child reach his potential. I will continue to seek effective therapies, interventions, appropriate education, community participation, and I will continue planning for his future. I just might be a little more chill about it. Surrender also meant I stopped riding his challenges and bad days so closely. I can feel sad for him and pain when he suffers but ultimately, it is his life, his journey, and my job is to love, support, and cheer him on.
There is always a rich reward when I pause and appreciate my son’s unique essence and the many gifts he offers the world. Today as I write this, Arthur is in his room singing along with Karen Carpenter. What 17-year-old boy in America listens to the Carpenters? Mine does and he’s belting out Close to You at this very moment. It’s delightful. He’s delightful. Moments like this give me the rocket fuel I need to propel my way through the inevitable work it takes to meet his complex needs.
I will not always know how to help him. He will face hardship, he will struggle, I’ll do my best and that will not be good enough sometimes---and that’s ok.
I surrender."
-Katrina D.
Arthur is now 18. He continues to process the world differently, with determination and flare. He has limited verbal ability but understand most of what is said to him and can express his needs. Arthur is able to access what the world has to offer with the support of caregivers, adjustments, and other accommodations. He is an extraordinary person who brings out the best in those who get to seek to understand him. Arthur is smart, caring, loyal, funny, and loves his sister very much.
Arthur was asked and he gave permission for this story and the photos to be used. Thank you, Arthur.