Lack of Eye Contact??

Good morning, all. Ravi is still in the hospital but continues to do well. I hope I am not jinxing things by saying that he will probably be discharged in a few hours. But I want to tell you something magical that happened last night. But, first, a quick refresher on autism and it’s so called “deficits”.

“Autism- a developmental disorder with symptoms that appear within the first 3 years of life.

Deficits in social communication, and interaction.

Restricted repetitive behaviors and interactions, interests, or activities.”

Symptoms/Behaviors:

Reduced eye contact

Difference in body language

Lack of facial expression

Not engaging in imaginary play

Repeating gestures or sounds

Closely focused interests

Indifference to temperature extremes.”

Last night I was sitting on Ravi’s hospital bed, saying goodnight to him before I headed home. He was covered in a blanket, watching his beloved Sid the Science Kid, on PBS kids. I told him I was about to go home but I would return in the morning, and we would go home together. Suddenly, he popped out from under the blanket and looked me deep in the eyes. I smiled at him. He smiled back. He made a sudden move to grab at my glasses. I ducked his hand and put his own glasses on his nose. He beamed at me. His crossed eye straightened out. I wrinkled my nose at him. He wrinkled his nose at me. I smiled, he smiled. I said, “You are my best boy ever, aren’t you?” He gave me a toothy grin in return. I took his two big hands in mine and squeezed. He squeezed back. I leaned toward him. He leaned in towards me. We sat there for a long time, almost nose to nose, just looking at each other and smiling. It was almost like Ravi had read over his supposed list of autism “deficits “and said, “Here, hold my beer.” He was doing everything the naysayers had said that he would never do. He was making deep, intentional eye contact. He was mimicking my facial expressions. He was squeezing my hands. He was inviting me into his world. (Shout out to all the “professionals who said that Ravi exists in his own little world and shows no interest in engaging with others.) I really cannot describe those 15 minutes I spent with him, but they were magical. Ravi and I were in our own little orb and the rest of the world disappeared. For the longest time, we simply sat there, holding hands, looking in each other’s eyes, and mimicking each other’s facial expressions. Our eyes were locked, and our breaths were matching. Sadly, the life of the hospital interrupted this magical moment. A cart clattered by in the hall. A page came over the intercom, announcing a code 21 in the adult ER. (Code 21 is a mental health crisis). The baby in the next room let out a lusty cry. The moment was gone. Ravi squeezed my hand one more time and then slipped back under his blanket fort. I kissed the top of his head and vanished into the night.

As she often does, my muse woke me up early today. Ravi’s deep blue eyes and smile were the first thing I thought of when I regained consciousness. The word “liminal” was running through my head. I thought of all the “professionals” over the past 20 years who listed all the things that Ravi would never be able to do. Then I thought of and gave thanks for all the believers in Ravi, those who knew he would do amazing things in his own time. I looked up the word liminal. Wikipedia describes liminal space as this: “the uncertain transition between where you have been and where you are going physically, emotionally, or metaphorically. To be in liminal space means to be on the precipice of something new but not quite there yet.” Last night, perched on an uncomfortable hospital bed, Ravi and I entered liminal space. Walls and barriers between us fell to the side. I felt deeply that he was letting me into his world, inviting me in. Also, I felt that he was interested in coming into my world. This was a brave new space for us, and the moment ended too soon. But these brief, magical moments gave me hope. Hope for Ravi and hope for his future. Hope for a life outside of the hospital, outside of cancer. For Ravi, and for me, there will never be a life outside of autism. We are autistic. It is our neurotype. This does not sadden me. We do not need or want a cure; we just want acceptance and accommodation. We want time and space to explore the world and pursue our own interests. We want time to be together. I am deeply grateful for the time that we had together last night.

So, what now. I will finish up this blog. I will go for a run, feed the dogs, shower and return to the hospital. Hopefully, I will bring Robert and Ravi home with me. I will look for more liminal space with my son and with the world. In the meantime, be good humans and we will be in touch. Peace, Harriet.