What is it like to be Non-Speaking?

I have no words to describe what your experience must be like. I have no words, because I simply don’t know what it’s like.

Only you know, my sweet boy. 

I have no words to describe what it must feel like to wake from a nightmare at three and a half years old, get out of bed silently, and run toward your parents’ room. 

What is it like to hope you find the door open, so that you can run right in? 

Sometimes, we forget to leave it open.

Sometimes, you knock lightly after finding it closed, and then curl up to sleep on the floor in front of our door. 

The other night, I heard your footsteps thudding as you ran down the hall. You ran through the door and leapt in to bed. You actually jumped!

Then your skinny little arms waited for me to hug you tight. I wrapped my arms around you and breathed in the smell of your soft nutmeg colored curls.

You pulled my arms around you even tighter. You were so scared, sweet boy. I could feel your heart beating against mine as quickly as a tiny bird’s. 

What is it like to be so little and to have to face such big fears all alone? 

I couldn’t ask you to tell me about your dream the way I would have if your brother and sisters had come running into the room with a nightmare at your age. 

I couldn’t tell you whatever you had been dreaming about would never happen, I couldn’t exaggerate the silliness of it so that we could laugh together. 

Since I didn’t know what your dream was about, I didn’t know if I should be telling you that we have a fire alarm on each floor and that your older brother makes sure that the dead-bolt on our door is locked properly every night. 

When your older brother was your age, he used to have nightmares about hunters in camouflage coming to get him with bows, arrows, guns, and knives. He had seen a man dressed for hunting walk across our field one evening and the nightmares ensued.

I held him, just like I am holding you now, but I also listened as he described his fears.

Next time the hunters came, I walked down and asked if they would come meet my son. I told them about his dream and what still frightened him. They were nice men, with little children of their own. They followed me up the hill to the house and talked to your brother.

I saw him relax as they explained why they were wearing the clothes they had on, as they told him about their little ones at home, as they apologized for making him afraid. 

He never had those dreams again. But you, my littlest boy, your bad dreams keep coming. 

In the night, in the morning, the only thing I have to offer you is a hug. A wordless hug. A hug that is just as much you hugging me as it is me hugging you.

Most days, we are just barely holding each other up. There are no words to describe how helpless this feels as a parent. 

Tonight, is no different. I have no words to help you feel better. No words to convince you that I understand. 

In the morning, I know you will smile and laugh at something that pops into your head when you’re sitting in the bright crack of sun that finds its way in through our back window.

I wish I knew what you were thinking of. I wish I knew how to share it. 

What is it like for you to have a head full of questions that no one will answer?

I imagine it is like growing up in a foreign country where no one speaks your language, not even your parents.

I imagine I have absolutely no idea what that would feel like. 

Your brothers and sisters had so many questions at your age. I remember so many of them like they were spoken yesterday.  

“Momma,” they would say, “Where are we going?””

“How long until my birthday?” 

“Why does my tummy hurt?” 

 “When will you be home?” 

 “Will my cut get better?” 

“Will I be a daddy when I grow up?” 

“Can I still live with you when I grow up?” 

“Are you going to die?” 

“What does ‘hope’ mean?” 

They also loved to ask me to watch them as they mastered new things. They would say, 

“Watch me, Momma!” Then they would run, swing, jump, bike, color, swim…wanting to make sure that I didn’t miss any of their new abilities.

They would keep checking in with me, “are you still watching, Momma?” 

“Yes! I’m watching sweetheart! You’re doing great!” 

But you, my littlest boy, were born into a world of forced silence. 

Your kind eyes are so often full of questions or brimming with a joke you’d love to share. There are no words to describe how it feels to only be able to kiss you on the head when you have a question, to have only a hug for you when you’re afraid, and to only watch your beautiful smile as you laugh.

I want to give you so much more.  

I say I don’t have the words to describe it, but I have no doubt that you do. You have so many words tucked in that little head of yours.

You have been listening and listening ever since you first opened your eyes. Your words are there, they just can’t seem to find their way out. 

Even though I don’t have the words to describe how you’re feeling tonight, I hope you know these things:

I’m proud of you, my sweet boy. So very proud. 

You are trying so hard.

I see it. 

Every day. 

You are brave, and kind, and you are far more independent than you should ever have to be. 

I am here with you, even if the words never come for us. I will be right here holding you as closely as I can for as long as you want me to. 

There is nowhere else in the world I’d rather be. 

Written by, Sarah Wenger

I am a teacher at a title I school in Baltimore. I have five children. My almost three year old, Johnny, was diagnosed with autism at 18 months through Kennedy Krieger. I’m a busy mom, teacher, graduate student, runner, and writer. You can follow our journey on our blog, Love Beyond Words and on Facebook at https://www.facebook.com/ourlovebeyondwords/.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.