I don’t hear my son call, “Mom!….Mom! It’s not working!… Mom, can you come here?”
What I hear instead, coming from upstairs, is an exasperated grunt and a rough shift in his chair. This is often my only clue, my signal to go to him, to pointlessly ask, “What’s wrong?” To stand near him, watch what he’s doing, and try to decipher what problem has arisen.
He doesn’t say, “Hey Mom, I’m playing this video, just like I always do, on your computer? But I can’t hear the music… And now it keeps going but without the sound!”
What I see is my son sitting in front of my computer, YouTube pulled up, playing one of his latest favorite music videos. It’s silent, though, and that’s definitely not right.
He doesn’t ask, “I don’t want to watch it like this, Mom. Can you fix it?”
What I feel is his anxiety level rising. His body is twitching in the chair, his face is furrowed in worry, and he’s making his not-so-happy noises. He’s ready to blow.
Lucky for me, this time, there’s an easy solution. He hasn’t noticed my headphones plugged in to the computer, stealing the sound from the computer’s speakers. I explain, unplug the headphones, and help him return the video to the beginning. As music fills my office, the stress of the moment fades.
He doesn’t say, “Thanks, Mom,” but I hear it anyway.
My son is not “non-verbal,” at least not in the literal sense. Unlike some on the autism spectrum who never develop the ability to speak, my son can say simple words and short phrases, he can repeat strings of sounds or words, and read words off a page. Compared to a typical person, though, he’s far from verbal.
His vocabulary is not large, and he does not always have the words to express himself. On a recent Saturday, I wrote down every word he said with the intent to communicate. He used only 15 different words or word-combos, and that included “no” (repeatedly), “daddy,” and “onion rings” (among other foods).
He doesn’t speak in full sentences, can’t engage in typical conversation, or answer most questions. Sometimes when he tries to speak, his words come out wrong.
And, when something is not right in his world—a world that he works very hard to keep familiar and expected—his stress over a perceived problem is compounded by the stress of not being able to explain it. He has to rely on us to see the issue and help him find a resolution.
Sometimes, if his panic in the face of a disruption to the expected routine has not yet derailed him, he can find at least a single word to alert us that he needs help.
Earlier this summer, we were staying at a different house for a weekend vacation, and my husband had helped our son get to bed following his regular routine. But within a few moments, the kid came out of his room and came to his dad saying, “Go to bed,” signaling that something was amiss and dad needed to fix it.
My son couldn’t yell from his bed, “Hey, Dad! Can you turn that porch light off? We left it on when we went out earlier. It’s right outside my window and it’s too bright in here now.”
He could only bring his dad back into his room, stand at his bed and hold out his arm in the general direction of the window, willing his father to see what was different in the room from the night before.
The dim light was barely noticeable through the closed blinds, but since we’re hyper-aware of every change in our environment, always on the lookout for what our son might see or feel or hear, my husband saw it and guessed that maybe this was the problem. With the communication deciphered and the light turned off, the world was made right again.
As our son climbed back into bed, his now relaxed body whispered, “Thanks, Dad,” even though his voice did not.
These were a couple of the more simple situations, where we could figure out the issues quickly to avert the pending crises. Many other times, we are not so lucky, and we are clueless as to what our son might need. We watch for body language, listen for changes in tone and breath, and do our best to guess what he is thinking.
It often feels like he’s a foreigner in a place where he doesn’t speak the language and he has to use only gestures and a sparse unfamiliar vocabulary to get his point across. All he can do is hope the locals are patient and kind-hearted enough to figure out what he’s trying to say.
When we’re out in the community, too, I become not just his parent or his caregiver, but his interpreter. Often, my most important task is facilitating communication between him and the outside world, making sure that others understand the probable meaning behind the few words he says and the behaviors and body language he presents. People assume that I always know what he’s trying to say, but there are many times when I’m not getting it right.
We continually work on expanding my son’s ability to communicate his needs, whether verbally or written or with any number of augmentative speech-generating devices. I want to help him move beyond the limited functions of protest and request, to the more complex language of expressing thoughts and feelings, worries and dreams.
But in the meantime, we have to be attuned to him, ready to interpret what he communicates non-verbally. It’s our job to see what he sees, or hear what he’s hearing, and try to understand what he wants to say even when he can’t find the words.