Our Family’s “Days with No Words”

If you read the “From me, to you” note on the homepage and the “Behind the Book” post you would know that everything about this book is deliberate, especially the title which serves as a challenge to the perception that assumes that if one doesn’t speak words this means they do not know them.

Aidan constantly uses words, he just does not speak them. His words come from buttons pushed on a device, stringing together his thoughts and then voicing them back to us.

His brother Jojo is the one responsible for our family doing these days for Aidan. He wanted to know, “why don’t we just ‘talk’ like Aidan talks? He meant, why don’t we just use our phones and tablets like Aidan does. And cue the Eureka moment. Or is it actually Jojo’s since it was his idea?

We refer to our days as “No Talk Days.” I cannot fully know what it is like to be in my son’s shoes but I do everything in my power to get as close as I can. When engaging in these days, we go all in. No half-stepping. No Talk Days are exactly what they sound like, days where we don’t talk. We started this back when our Aidan was about eight years old.

These No-talk days didn’t start as a game. This wasn’t something that was supposed to be fun. However, in the beginning to get my (youngest) son more comfortable with the idea of it all, I presented it as a game or something that could be fun. Over time, that “gameness” wore off. Because, this...isn’t a game for us.

Why these days are important:

To be closer with my son who is nonspeaking. This strengthens our bond with Aidan. He sees us using our devices, tapping images, and scrolling through different boards. Also, he’s still learning his AAC so this is also us modeling.

To get a better understanding of what challenges he has in this world.

This lets him know that we are trying to understand him and the challenges he faces interacting with a word that is designed for the speaking. When we are using everything but our voices on these days, we are learning what it is we need to advocate for to make his life easier. We are learning how difficult it is to make our needs and thoughts known when we don’t speak in a world that caters to those who do. We are learning that there are ways to get our needs met even though we aren’t speaking. This opens up our hearts, and opens up our advocacy.

How we make these days work:

We do them often. Several times a month. And I don’t just choose days in which I know we will be homebound. I make sure to choose days I know we will be out of the house. This is important. I want to get a feel for his life, and we aren’t always home.

If we stay truly committed to these days, and we do, we are able to see how the world responds to us. We are better to see how we can navigate this world with no speech. We can better assess what it is we need to fight for, for our son. And other nonspeaking and/or situationally speaking persons. We are committed to this. People will talk to us but we won’t talk back. We use the same app our son uses to communicate with them.

What we learn:

I learn that many people are impatient, but many are kind. Many are understanding. There are many who think us rude when we don’t respond. And then they feel pity when we respond with no words. We learn of the many ways in which the world can be more accommodating to those who don’t speak. We learn of how frustrating it can be when someone doesn’t understand you or what you want.

In the beginning I learned that I was embarrassed because I was using an app. I learned that I was ashamed because ppl couldn’t understand me. These were feelings I held on days in which speech left me but I wouldn’t dare keep myself in those situations, I would remove myself or not even put myself there to begin with. I learned to tough it out for my son. He deserves it. He is worth every bit of discomfort I felt in those times. And now, I don’t give a darn.

People are gonna wait the extra time it takes me to type this sentence or get the heck out of my face. I cannot fully know what my son experiences on a daily basis as I am not completely nonspeaking. But I will put forth my best effort to try to understand him and his life. And I will do all I can to make sure that I am fighting for him, not only in the way that he deserves, but in a way that would make him proud. I have to know what it is that he needs. What is it that is going to make his life better? What is going to make navigating this world easier for him? I am always looking for what I can do better than I did yesterday. These Days are part of my action. It's part of my work. It helps me to better understand my son and what he needs. It helps me to channel my fight into the things that will benefit him the most.

In conclusion

We are but one family trying to normalize nonspeaking experiences. But a whole lot of change can start with just one person. This is something that is important to me. This is important to my work. And this is most important to my son. I wanted this book to be a call to action in that other individuals and families, regardless of their connection to Autism and/or Nonspeakers would participate in their own.