Every once in a while, just when you think you are sailing on smooth seas on a sunny day with a pleasant breeze nudging your sails along, a giant rogue wave comes out of nowhere and tosses you into an icy surf.
Over tonight’s dinner out with my boys, Mateo told us that he wants to learn to talk with his voice, his REAL voice (pointing to his mouth). He said that he knows he can do it if he works at it really hard and he knows that I can help him. Gulp.
He went on to recall that his friend Kevin told him in the 5th grade that he knew that Mateo would eventually learn to talk. That was four years ago. Mateo also recounted that one of his elementary school teachers told him he’d have to use his Dynavox forever. It turns out that Mateo wants nothing more than to prove that guy wrong!
Mateo is profoundly speech impaired. At 15, and nearing 6 feet tall, his verbal speech is only intelligible to very familiar listeners and only at the level of a word or two when the context is known. In the later elementary school years, we made the decision to concentrate his therapy time (at school and at home) on becoming a competent AAC communicator. Over the years, we’ve tried to tell Mateo that he may always rely on technology to be able to communicate the depth and breadth of everything he has to say. We never told him to give up on that “real” voice of his, but we wanted to be realistic too. He’s complained from time to time “I hate having to use technology” and we always told him how grateful we are that this technology is available to him. Where would he be without it?
The emphasis has always been on his language, literacy and social communication. We’ve seen Mateo shine more than ever before. He’s been developing very lengthy, complex and grammatically correct sentences to express everything on his mind (or so we thought). Gone are the days when we constantly have to prompt him to tell us more. Now, we often joke that we need to work more on developing that filter to prevent him from saying anything that comes to mind.
Here’s the comment that hit me with the hardest force:
“I think that maybe God saw me and said he is going to talk with a Dynavox.”
So I asked him, “What if that was part of God’s plan for you?” and he said, “Well, that makes me feel very sad.”
Next, I asked him to tell me what he doesn’t like about talking with his Dynavox and he explained that he can’t always say what he wants to say. When I pressed him for an example, he couldn’t give us one. Maybe that was an example right there or maybe this was just a really tough conversation and he needed to take a break from it. I’m not sure. Frankly, I was overwhelmed and struggling to keep it together myself. This will be a conversation that will be continued over time.
The fact that Mateo could express all of this to us in a crowded Mexican restaurant (using his Dynavox, I might add), tells me that he will continue to make connections in the world in any way that he can. Mateo will continue to prove to every one of us that he has a voice and he will use it. Maybe we will begin to hear his “real” voice more. I’m certainly game if he’s willing to work at it.
I am so grateful that Mateo reached out to tell us what was weighing on his heart today. After all, he’s a typical teenager and he took the time to have a very real, very difficult conversation with us. And I’m humbled.