I was filled with worry and doubt. Heading up on the escalator from the first to second floor, the nearly-white haired, fair skinned boy in a striped shirt and shorts caught my eye. He called out to his mom. He was on the second floor with his dad, looking over the railing to the first. “Look Mommy! Look at me!” he yelled. He could not have been more than two years old.
In that brief moment, those five words sunk my heart to new depths, solidly between my intestines, well below a natural resting zone. Something so simple, so benign to most, crushed me to my core. My son had never uttered those words, though he was twice this boy’s age. My son had never asked, motioned, attempted or indicated he had a desire for me to watch him do anything. He could not.
It was more than just not having the words that got me. It was the whole relationship that the words conveyed. The desire for the mother to watch the child accomplish something. That the child realized his triumph. Those simple words spoke of accomplishment, pride, a desire to share, communicate, and to bond. They spoke of a spirit of unity, a desire to please, a request for acknowledgment. And they spoke of love.
Our world was void, not of the feelings, but of the words. Hearing the words “speak” or “speech” for me, back then, made me think of the process of vocalization. “Speech” was nothing more than the way to vocalize the words inside one’s head. I did not think about processing what was heard with delays through multiple sensory inputs. I did not think about understanding and then expressing a response to what was said as part of “speech” or communication. Things that were so automated for me, I foolishly assumed, were equally so for everyone else, regardless of whether the vocalization actually occurred.
In that moment, on the escalator, I suddenly realized how shallow I’d been. I recognized that there was more to get the words out than “saying” them.
And in that moment, I wondered if there would ever come a day that my son would ask me to look at him. That he would feel the accomplishment, the pride and the desire to share that with me. When you look that in that direction and really see the unknown, as a parent of a young child with autism, for me, there was fear and sadness. Where did it come from and why did it overtake me so?
In a moment I went from a deep, comfortable love for my child to staring at a huge chasm that separated us. Instantly, I was overcome with desire to bridge it. But I had to search for the materials and tools to do so. That longing, painful desire to close that chasm propelled me. And I used the pain to move.
I don’t think the imprint of listening to that little, fair-haired boy will ever erase from my mind. There was an intensity after I heard those five words that woke me to the chasm. I saw it in all its depth and separation that day. That day was over two years ago. But the lessons that it taught me will last a lifetime.
Never let fear of the unknown stop you.
You see, I know now that the day did come. But at the time, I wondered. It did not come as it does for children without a disability. It has taken much longer. We still have a long way to travel. But the pain and the sadness I felt from those moments motivated me to leave no path untraveled and no rock unturned. In times of exasperation and doubt, I know that pain and fear will push me to find ways to help my child communicate.
We found a way. My little boy has grown, developed and blossomed. He still doesn’t say “Look Mommy!”
He says, “Watch me Mommy!” “Mommy to watch!”
The first time I heard it, the tears came. And after that, he said it again and again. Every day. I still relish each moment. To me, hearing those words is still as rare as a perfect diamond.
Many times, we cannot look past a chasm because it’s imposing, dark and deep. We want to run. But, as parents of children with special needs, we have no choice. We face chasms every single day. We stand our ground, build bridges, tie ropes across, wage our battles and fight. Because love always trumps fear and pain.
Remember that those words have come for others. We are no different from you. Use your pain and your fears. Harness them as your power. Many good things are borne out of a bizarre combination of desperation-motivated searching and deep love.
From one mom to another, you are never walking this path alone. There are thousands of us on the same journey, each standing on rungs of life further forward or back on the path. We hold each other up, laugh, cry, shake fists, share and love. Hey, watch me! And I’ll watch you. Pull me up and I will pull you. We can cross the void together.