“Mom, what I go to therapy for?” I wasn't expecting this question so soon. For weeks, he has been asking if he is almost done, if today is his last day. It's been over a year of therapy two days a week with no end in sight. I tell him he still has a long road ahead of him, that I am so sorry but today is not the last day. I know he is tired of coming to this building two days a week, of working so hard and having to be so patient. I'm tired too. I'm tired of the long car rides and the stares I get from people when they hear him talk, when they think his words are less important because they are harder to understand. Part of me was hoping he wouldn't ask this question. I know I could give him the simple answer- that he has a speech disorder and therapy helps him communicate better. But this question feels loaded and I don't want to give him just any run of the mill answer. We pull into the parking lot before I can respond and secretly I am relieved, I don't know what to say.
I never do.
Words are hard for him, they are a struggle for me too.
The snow is falling outside, he's days away from two. I’m sitting on the floor playing with my son. He brings me a baseball. Grunts replace words as he shows me what it is he wants me to do- pitch so he can hit the ball. I hold the ball in the air. “Say ball,” I beg. He used to be able to say it, but he doesn’t anymore.
This is one of the fleeting moments in my memory when I realized he wasn’t developing the way he was supposed to. He had dozens of words by 18 months, but slowly he lost them. By his second birthday, he was barely speaking at all. He wasn’t putting sentences together. I knew, deep in my gut, something wasn’t right. When he did speak, it was nearly impossible to discern what he was saying.
As a first time mom, I don't know what to do. I cling to the hope that I carry within that this will pass.
My womb swells with new life as the flowers bloom and the grass turns green. With spring arriving, hope begins to flourish in my heart. My son has a few new words, a couple sentences. I begin to think we are turning a corner, making progress. “Listen to what he can say,” I beam proudly. “I think you're hearing things,” I hear in return. No one else can hear what he is saying, no one else understands.
I made every excuse to hide the doubt and fear looming in the back of my mind. He’s just a late talker. I know he has the words. Some kids don’t talk until they’re 3. One day he is going to take off and never stop talking. Excuse after excuse, I tried to make myself feel better. I talked to him incessantly and did everything I could to get him to talk, to say the words I knew he had. I researched how to help late talkers, I read to him, talked his tiny ear off, and had him around children his age multiple days a week. I had music on, tried to keep the television off, in case that was hurting his speech. Nothing was working.
It's July and we're in Michigan meeting my son’s extended family, including cousins only a few months older. I'm suffocating under the hot sun, the humidity, the words that his cousins have that my son does not.
“Do you want to come build a campfire in my backyard?” his cousin, four months older, asked.
It took everything in me to not cry when I heard him say that sentence. I hung onto every word he said after that, shocked at the clarity and variation of his sentences. With each word and sentence his cousin said, a piece of my heart shattered. I found myself guilt-ridden, embarrassed, and bitter. My son was asked his name and age by family members meeting him for the first time. He couldn’t answer. When he did speak they looked at me dumbfounded until I translated.
It's fall. The fear burning inside of me is as red as the leaves on the tree. As the leaves fall, so does the hope I once held onto that he would be able to tell me his name.
I call a therapy center and schedule an evaluation, but it’ll be a few months before we can get him seen. It will be months after that before we have a diagnosis, before he can receive services. I sit in the unknown watching kids his age thrive, hold conversations, tell jokes, sing songs, and I wonder if he will ever be able to do those things.
The winter has arrived again. This time it brings a baby sister and answers along with the snow.
“He is so smart. He understands so much, and he wants to communicate. He knows what he is trying to say, but he just can’t do it,” his therapist tells me. He was diagnosed with a neurological speech disorder, Apraxia of Speech, a few months after his third birthday. So much of that time is tainted with postpartum depression, it’s hard for me to recall everything that was explained. All I remember is crying. A lot. His diagnosis took me months to accept. I couldn’t comprehend what it all meant. Once the fog of postpartum depression lifted, I could see clearly what was in front of us, what my son’s future would look like, and what I needed to do to help him thrive.
Now I worry about him every time we go out in public, especially when he will be around other kids. I am in the background observing him and how he interacts with his peers. He loves to play and will join any group he sees. As much as I love to see him socialize, laugh, and be a kid, I am terrified for him. I can’t help but wonder when the bullying is going to begin. When are kids going to make fun of him, point out how weird he sounds, say he is stupid? When are they going to mock him behind his back and talk about him when he can’t hear them? When will they start ignoring him altogether because they don’t understand? Will he have the words to stand up for himself? Will he use silence as his protection?
With everything that I know, and everything that is still too far into the future to see, this is what I want to tell him: We come to therapy so that you can work on your words- make them more understandable and more fluid. I know you are going to struggle and I want to make it easier for you. I want you to have a team to help you when it seems to be too much, for when the words are hard.
I bring you to therapy because I don't want you to grow up hating words. We don't know the struggles you will face during your school years with literacy. You will receive even more therapy to aid with these potential struggles, but I don't want you to see words as a punishment; I want you to love reading, writing, to find yourself in stories, to discover different worlds, to learn that our differences have the potential to make our world better. When the words that you read, write, or speak are too hard, I want you to know that they still matter.
Words are powerful- they can break us just as easily as they can heal us; this is something I fear you will learn firsthand, just how much words can hurt. I don't want those words to define you. I don't want the hurtful words to silence you. I don't want you to lose your words, to think that they can't be powerful because they come out a little different.
Even those imperfect sentences that leave your perfect little mouth matter. When no one can understand you, when people ignore you, when you feel silenced and alone, your words matter. All of the words in your head, your heart, words that spill off your fingertips, that transport you to different worlds, that come out a little wrong, they all matter.
Because of therapy, you have hundreds of words now that you didn't have a year ago. Every single one matters. And you matter.
Written by- Jacey Rogel