My son can't speak.
When I started to read about his particular syndrome, and meet other parents around the world that have children with the same syndrome, this is absolutely the one feature that terrified me more than all the others.
What did that mean, he might not be able to speak?
Me-someone who actually makes a living by writing words, speaking words, editing words-I might have a child that could never speak to me? Why?
It's very hard for a parent to grasp that idea. That is not to say that he couldn't communicate, but he can't speak in words. I can see him thinking, but something in the wiring of his brain prevents him from being able to turn his thoughts and desires into words. That also does not mean that he doesn't understand words-he does. Lots of them.
So for years, we learned the language of speech pathologists, did signs, and picture cards, and let him physically guide our adult hands to what he needed.
But assistive technology has made miracles happen for people with disabilities. Particularly with communication. The iPad has hundreds of apps that help people with disabilities "speak". It's quite remarkable.
The other night, we took out his fairly new communication device. It's called a Vantage. It's a very impressive, high tech personal device.
I asked my son if he wanted to say anything.
He quickly navigated on the push screen to his social page.
"I love you."
He smiled, and I pressed "I love you", and gave him a big hug.
Then he "told" me a knock knock joke.
One press for the joke, then he waited for me to say "who's there".
Another press for the punchline-with perfect comic timing-he actually gave me a look, paused and then hit the button.
I laughed-it was a good one, and then he pressed "that's funny".
Sometimes in the midst of the non-stop grind of work and family and politics and the basics of your food and shelter, laundry and chores, you have to double down and make an even greater effort to appreciate the truly glorious.
A whole new world of communication is opening up for a very special little guy.
He's got a voice. He's speaking.
I'm so very grateful.