On Belonging & A New Diagnosis

We arrived with plenty of time to spare in the waiting room. My five year-old wandered from his small bag of books to the more enticing table toys, until he finally settled in a faux brown leather chair and signed, “Eat.” A handful of crackers and a swig of water seemed to satisfy before his name was called and we were led down the quiet hallway to exam room number three. 

The Developmental Pediatrician (DP) Team met us there, where I answered countless questions and clarified those I had already provided in the paperwork, whilst wrangling Sam from the off-limit items in that room. “No touch” was my mantra as he ran toward the strings that lifted the window blinds, to the tissue paper covering the exam table, to the biohazardous waste can, and finally to the laptop, where he marveled at another doctor who continued tapping her keys and smiling at her energetic, sensory-seeking patient. 

As the Team left to confer privately with their recent data, I snatched up my 45 pound boy, snuggled him close, and whispered, “I love you, I love you, I love you.” I set him down to run and swallowed a growing lump as I thought about the significance of this appointment and the news that would confirm my suspicions, if not today, certainly in the weeks ahead.

When Sam’s DP returned, she leaned against the side of the exam table, looked right at me and gently said, “You are right to be concerned.” Holding my stack of paperwork and a kind tone, she continued, “There are signs…it is likely…” and finally concluded, “I’ll collect more specific data from you and his school team in the next few weeks and we’ll meet again soon.”

A month later, my husband and I met with Sam’s DP on Zoom, though we didn’t need to; I already knew. I knew my son had another label, another reason to be misunderstood, excluded, and avoided in a world that values people who are easily understood, who make eye contact when spoken to, who require minimal effort to know, who fit within the able-bodied, neurotypical box. I knew Sam had Autism Spectrum Disorder. The past two years of personal research, informative books, knowledgeable friends in the field, and daily engagement with my dear son had served as signs pointing us to this unique and unexpected road.

As we waved good-bye to the DP Team and stepped out into the sunny parking lot, I held tightly to Sam’s wiggly hand. After hoisting him into his car seat, I took a moment to drink in his almond-shaped brown eyes, infectious smile, chubby fingers, and skinned knees. I squeezed the ticklish spot on his thigh and laughed at his infectious giggle. This diagnosis wouldn’t diminish those gifts–or my ability to notice them; it would never diminish the wonder that is Sam. It would serve as a way to better understand the intricacies of his beautiful mind and to access the support he needs as he grows.

I climbed in to the driver seat, clicked my seat belt, took a deep breath, and turned on the radio. Seconds later, a favorite song began to play through the speakers. As The Lumineers sang, “I belong to you, you belong to me, you’re my sweetheart,” I glanced in the rearview mirror to see Sam singing along for the first time, “I beee awn oooh, yooo beee awn meee.” 

This song was more than a collection of well-written lyrics with a catchy tune. It felt like an anthem, not only in that cherished moment in the car with my beloved son but in the past five amazing years of raising him.

After a year of processing this possibility, I am learning to see this new ‘official’ diagnosis as an invitation. It’s an invitation to look at the world a bit differently and to join a dual-diagnosis community where we have already felt supported and where we hope to offer our support to others.

While I struggle at times with what this could mean for Sam’s friendships and future (I have more posts on that!), we move forward full of hope, walking this new road together, and remembering always that we are not alone–that we belong to each other and to the One who holds us all.

Featured image: Lili Popper at unsplash