My Son With Cerebral Palsy Is Learning to Speak on a Device
Why I Want My Son to Interrupt You
"I. Sky. Look. Elephant. Elephant. Elephant," Charlie hits on his speaking device, the thing that looks just like an iPad.
Despite myself, I actually look at the sky. There is no elephant. Of course there isn't. Charlie snorts, and I hold his hands between mine before he can hit repeat. It's his favorite thing to do — fool me into thinking he's communicating, when really he's just playing. His best game? Hitting a million nonsensical buttons in a row to make his speaking device sound like it's hyperventilating.
"Charlie, I know you're being silly, but can you use your voice for me? Can you tell me about school?"
By the time Charlie grows up and leaves the nest, I want him so savvy on this speaking device that it's like watching a young Steve Jobs, maestro at the keys.
It's four o'clock in the afternoon and he's just had a full day of kindergarten, and I know the last thing he wants to do is more work. But I really do want to know how reading and PE went. Did he get out of his wheelchair at all? Did he interact with his friends? With my younger two kids, I take for granted their daily recitation of preschool — he ate a booger at lunch; she swung on the big kid swing all by herself; they both skipped naps. But with Charlie, each nugget of information is precious. His cerebral palsy limits his language to a handful of signs, gestures, and words. This speaking device is all about expanding that. I would rejoice if he told me he ate a booger.
We're working on the device now, so early in life, because I want him to be as independent as possible down the road — and having a voice is a giant part of that. He understands everything, can read, do math, and navigate an iPad like an old-school hacker, but no one is going to know these things if he can't find the words to tell them. The working world is not going to be swinging open its doors at his approach if he can't prove himself. I understand what he needs and wants without him having to say a word, but that's a mom thing, not a boss thing.
By the time Charlie grows up and leaves the nest, I want him so savvy on this speaking device that it's like watching a young Steve Jobs, maestro at the keys. I want the words to come so smoothly that you forget it's a voice on a screen. I want him to interrupt you. Yes, I do. I want his colleagues and supervisors to be unable to ignore his opinion when he offers it. Because this kid always has an opinion, and he deserves to be heard. The key is to find out how to best let it out.
And so, on that rainy, Fall afternoon, we sat together on the couch sharing a Costco package of Goldfish and talking about elephants in the sky. It turns out he had checked out a Disney Dumbo book from the library. Perhaps we are farther along than I thought.