“Once I knew only darkness and stillness… my life was without past or future… but a little word from the fingers of another fell into my hand that clutched at emptiness, and my heart leaped to the rapture of living.” -Helen Keller
The inability to effectively communicate is debilitating.
This past weekend I attended a conference on Augmentative and Alternative Communication (AAC). I was particularly interested in learning how electronic speech output devices are being used to help individuals with autism communicate.
It was quite moving to see the story of teenaged girl who had struggled with communication barriers all her life gain, through assistive technology, something so fundamental to life – the ability to express herself.
During the conference, we watched a video of a 9 year-old boy named S. S was non-verbal and severely impacted by autism (and most likely other disorders.) He wore thick glasses, and periodically swayed in his chair. He was seated in front of a table-top bowling game. There were little pins and a matching ball on a tray. S had a team of therapists around him: speech language pathologist, occupational therapist, physical therapist, a teacher and an aide.
The SLP got S’s attention and demonstrated the game by rolling the ball and knocking down the pins. Everyone cheered. S barely seemed to notice. The therapist, using hand-over-hand, guided S to pick up the ball and knock down the pins. S’s eyes were averted, but the team cheered when the pins fell.
The SLP placed a speech generating device in front of him that had a symbol of a ball and a symbol of bowling pin. She demonstrated (using hand-over-hand) touching the ball symbol. The device said, “Ball”, and she gave the ball to S.
On they went, teaching S to request the ball using the ball symbol on the device. They commanded his attention, and I could see S trying with everything in him to focus, to make his mind and body do what they were asked of him. After many, many attempts, it seemed that S was catching on. I was sitting on the edge of my seat in the auditorium watching all of this on video, and I was emotionally exhausted by the entire process. Each time I willed S to request the ball, as if my own life depended on it.
I needed S to give me hope.
Finally, the team moved on to teaching S to request a pin. They painstakingly prompted him along, each time cheering loudly (and I was cheering, too) when he allowed his hand to touch the pin icon. S began to drool. Someone wiped his mouth. Each time S “requested”, we heard the digitized sound, “Pin”, and another bowling pin was placed on the tray. At this point, I was practically sweating and my face was hot. C’mon S, c’mon, you can do it. You’re almost there!
There were 5 pins on the table. I could feel the excitement in the room. Soon all the pins would be up and S could request the ball. Then he would be able to roll the ball and knock down the pins. On the video, S could sense the excitement as well. He began rocking a little, moving his head from side to side, eyes toward the ceiling. The therapist had his hand, prompting him, guiding him to the pin icon.
In one swift jerk, he accidentally bumped the tray and all the pins fell.
There was a collective groan in the auditorium… followed by some good-natured laughter. On the video, I heard someone say,
“Let’s take a short break, and then we’ll try it again…”
Because S needs a voice.
As does my daughter,
and so many others affected by autism.
Just when I was feeling a little weary, S and his team inspired me to keep going.
And when the pins fall, we’ll start all over again.