The Moment My World Stood Still

It was a Sunday night. I had locked myself in the guest room with my mac book. I had had this feeling gnawing at me that something was not right with Sander. He was 2 years and 4 months old. I was a first time mother.

I sat staring at the blank space in “dr” google. I thought back on my conversations that I had been having with friends, family members and acquaintances. Talking to my Mom on Christmas, “But Mom, why does Sander only like the wrapping paper and not the present? He prefers to hear the wrapping paper rustle and then tears it up into pieces.” “Kimberly,” my Mom had said reassuringly, “he’s not even 2 years old. He’s fine. Stop worrying. All toddlers do that.”

I remembered the walk Sander and I had taken with my girlfriend. Sander had been sitting in his Bob’s stroller. He loved stroller rides and seemed lately to need constant motion. When we went to make a right, Sander started shrieking and banging his hands on the stroller. I said to my girlfriend, would you mind if we went straight instead? It’s so strange, Sander wants to take the same route every time or he gets upset.” She said, “maybe because it’s familiar.” Huh, I thought.

I opened my phone up and began scrolling through the pictures I had been taking. I had been so proud that Sander had built a “train” by lining all of his cars and mobile toys up in a line, toys that just a few months ago he had been playing with properly. I had sent the photo to my husband with the caption “our genius son! He has invented his own new way to play with his toys,” and I had meant it. I had believed it. I had thought he was so creative.

I looked at the blank space on google and began typing words like, lining up toys, rigidity, and sensory. The screen began filling with articles, Lining Up Toys –Autism: 9 Warning Signs Every Parent Should Know, Sensory and Sensory Processing Disorder-Mama OT, and Evidence-Based Behavioral Interventions for Repetitive Behaviors in Autism.

The word that flashed neon red to me was Autism. I slammed the computer shut and began to have trouble breathing. What??? My whole body rejected the very idea and my brain simply could not wrap itself around the concept.

Sander…autism

Sander…autism?

That’s just not possible.

Like every first time mother, I had been nervous. Would I be a good mom? Would I be enough for my baby? I had all of the same concerns that all new mothers do but my excitement was a little bit different. I had been an orphan, a found orphan, but an orphan none the less who had been adopted at 9 months old to a wonderful and loving family. I was born in Korea and adopted to a Caucasian American family. I had never looked into another persons’ face and seen part of myself reflected back.

Sander was to be my first blood relative, the first person who was bound to me by blood, by skin color. Would he have my  nose? Would his eye crinkle a little like mine when he laughed? The excitement of having my baby was about to fulfill something that I had always longed for.

That one word, autism, caused everything to come crashing down. The tears began pouring out of me. And then I had a thought, how would I tell my husband? Sander was his everything too.

I didn’t sleep all night.

I called the pediatrician first thing Monday morning and told the receptionist that I believed that Sander had autism and asked for an urgent appointment. She informed me that they usually refer these types of concerns to a pediatric neurologist. She asked, ‘Mrs. Ram, are you sure? We saw Sander just 5 or 6 months ago at his well visit and he was fine.’

‘Yes, I am sure. Something is wrong. Can you please have Dr. D call me back?’

Dr. D called me that afternoon and I began explaining all of my concerns. He asked incredulously, ‘why hadn’t you thought to tell me this when we saw you 5 months ago?’

I stammered, ‘I hadn’t noticed it then. I hadn’t put it all together. It happened slowly over the last few months and maybe we missed some signs?’

That moment is when my self blame journey began. It is a journey that I still catch myself on to this day. What part of me was Sander’s autism diagnosis? What part had I played?

Sander’s autism was confirmed by the neurologist. The absoluteness and relenting grief and pain would hit me for days to come. It came like a wave. I could feel it building and then it would come crashing down and engulf my whole being. Some days I would be crying so hard, on the floor of my laundry room that my whole body would shake. I begged my husband to hold me but he was gone. His body was there but his heart and his dreams were shattered. He had checked out mentally after the diagnosis was confirmed. He began putting head phones on so that he wouldn’t have to hear my wails. I admit at times they sounded like a wounded animal; guttural, earth shattering.

My husband is a very loving, strong and thoughtful man but we have dealt with our grief since the diagnosis at different paces. He shut down and I went into ok, let’s fix this mode, let’s get our boy better.

I am grateful that with hard work, compromise and a whole lot of love for one another and for our son, we have found our way back to one another and have accepted that our beautiful 7 year old boy, has severe, non verbal autism. ​​

On occasion, I am hit with the feeling, Sander – has -autism. While I was typing this very story, I had put Sander in the tub so that I could have some uninterrupted time to write. I heard the grunting, ran in and found that he had pooped in the tub.

Like I said, oh yes, my son has autism.

Written by, Kimberly Ram

Kimberly is the the proud mom to a beautiful and funny 7 year old boy with severe, non verbal autism.

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