For me, the strangest part of having a non-verbal child, is not really knowing who they are and what they think. Sure, on many levels, I do know Oliver. But as his little brother Nicco grows up before my eyes and I hear the speech that flows from him so naturally, it reawakens the burning questions slumbering in dark recesses of my mind, “What would Oliver say? What does he think about? How much does he understand?”
Tonight, I was gifted the sight to see into that secret world in which he dwells and realized that even, I, his mother, have underestimated the intelligence and intention that lies within.
I was feeding Oliver and he made his normal face and sound “mmmbbboo” that means he’s all done. But then he arched his back and cranked his eyes as far as they could possibly look upward. He vocalized “bha bha” … The bookshelf is right above his seat.
I asked him, “Do you want to read a book?” He arched again, this time flashing a huge open-mouthed grin and squeal all while kicking his legs wildly. I said “Oh ok!! Let’s read a book!” When I chose the book he wanted, the excitement ramped up even more.
As I opened the cover his face became focused and he VERY intentionally swung his arm and hand out to turn the first page. Each page turn was met with equal if not more elation and by the end of the story Oliver was covered in sweat from all his efforts.
After the book he turned his head sharply to the left, away from me. It wasn’t one of his normal spasms or postures. It was a totally intentional eye movement meant to get my attention and communicate what he wanted. I had no idea what he was looking at but tonight, instead of just moving on and redirecting him to something else, I took a deep breath and really tried to listen and understand what he was trying to say. Over and over again he made that sharp movement to the left and directed his gaze toward his old corner chair. I was a little confused because that’s a piece of equipment that we almost never use anymore. But his communication was crystal clear and that was definitely what he wanted. So, I stood him on his feet and supported him to walk towards it.
When we got there, he jerked his head around toward the toy storage shelves behind us. Again, I was confused. Did I get it wrong? I had been so sure he wanted his corner chair. But tonight, I was understanding all of his movements and expressions so clearly that I couldn’t dismiss the intentionality of his communication. So, I turned his body around, and he excitedly walked toward the shelves. When we got there, he fixed his gaze on the bag of plastic Lego blocks in the bottom cube and vocalized “Bbaa” I asked him, “Blocks? You want bhaalockss?” He gave a huge grin and moved all his limbs excitedly.
I picked up the bag of blocks and his face became focused once again. I felt him moving his arm up and then swinging it out to grab the handle of the bag. Once he had it in his hand, he turned his gaze once more toward the corner chair. I asked him, “You want to go play with your blocks in your corner chair?!” He gave a huge smile of excitement and started marching over to the chair. I could feel pure joy emanating from him.
Tonight, we communicated like any other mother and son. We had a conversation. His needs were met, and my heart overflowed with joy. And immediately following that joy, came the familiar pang of grief and sorrow for all the years I haven’t known how to listen to him… for all the times I haven’t understood what he meant and haven’t been able to meet his needs.
Regrettably, I am a product of a culture that doesn’t often cultivate patience or teach real listening skills, especially the alternative kind. It has narrow definitions of communication and anything that falls outside of those parameters, is often missed or ignored.
But not anymore. I will transcend those limitations and onward we will move with a new level of connection.
After almost 5 years, I am learning to listen. And he is learning that, by communicating, he can get what he wants and needs. This is the level of interaction I’ve dreamt of but didn’t actually think we would reach for a very long time, if ever. We are finally developing a shared language that mixes vocal speech, eye gaze and expressions that are unmistakable as long as I am able to truly listen.
I believe the development of these skills are a direct result of using his AAC device. When he communicates with me now, his eyes make the same movements as they would scanning the screen of his talker. They are intentional and directed and clear as day. I only wish I could’ve gotten him his voice sooner.
In a moment tonight, I realized another level of who is inside this tiny little body with its dark brown eyes. And although I have missed too many years of connection, I am so thankful to get to know him now.