Yes/No: Conversations with My Son

"Hey, Wassup. My name is S."

Due to a brain injury at birth my son S has severe cerebral palsy. Hospital staff failed to monitor his heartbeat properly and he suffered from lack of oxygen at birth.

S is a multimodal communicator. He primarily uses a yes/no response to questions. A smile/vocalization is a yes. Eyes up is no. This is the simple, short explanation. The one I put on all the forms we fill out for school, summer camps, extra-curricular activities, and doctor appointments.

What it really means: Ask S a question that can either be answered with a yes or a no. If it's a yes, he will smile. Sometimes we are driving or speaking on the phone and we can't see his face. We encourage him to use his voice. A small hum from the back of his throat erupts, sometimes loud and sometimes almost inaudible, depending on the energy he has, because his whole body tenses and moves to get the sound out. When the answer is no, he looks up to the ceiling or the sky, depending on where he is. This action is quick and easy for him, it takes less energy and sometimes, he even anticipates the end of the question and "says" no before he hears all of it.

He also uses an eye gaze, a switch, and an iPad. Each of these is partner-assisted. Each of these is programmed by someone else. S's choices are not his choices; they are what someone else thinks he wants to say.

On the eye gaze, each page leads to a grid of twelve squares on a thirteen-inch screen that present choices for S. A cartoon-like picture accompanies each word, typed below it, in each square. The eye gaze camera is calibrated with S's gaze. He has to sit in his chair with the eye gaze at a specific height and distance for the perfect calibration. S can choose what he wants to say by looking at the square that asks or says what he wants to communicate. His eyes must dwell on the square of his choice for nanoseconds.

For example, when S looks at the "mind-blown" emoji, there is a computer-generated voice that says out loud, "My mind is seriously blown." He loves this one. It was the first one he chose when he got his new, updated profile, with more "teenagery" words.

Remember, we program his eye gaze for him.

Switches are pre-recorded with messages by someone else speaking for S. He has a step-by-step switch, which attaches to a clear tray that sits on the arms of his wheelchair. There is a large, round, colored button on top of the switch. S's switch has three levels, so there can be three different message subjects recorded. Once the message is recorded, he hits the switch to share the message.

Before recording messages for S, his partner will ask him what he wants to share. These messages are usually messages back and forth between school and home. He likes to share his activities, but his favorite thing to record is jokes. The partner records their words and their voice, after they ask S what he wants to say or what joke he wants to share.

The school team has a lot of fun with S with this and while they speak, they give pause and time for S to vocalize along with their words, so that it really is S's message. They all have nicknames for S too, "What's up?! Sebby-Sebby is in the house!" After a few lines about the day's activities, they end with a joke: "What do you call Chewbacca when he gets chocolate in his fur?" … "A chocolate chip Wookie!" Star Wars jokes are S's favorites. He also likes "punny" jokes.

Jokes can be tricky. S has dystonic cerebral palsy, which means that sometimes he has involuntary movements. He can control his arm to move towards the switch, but it takes a lot of effort. Sometimes...