“I’m a human being, not just an apraxia diagnosis.”      

My name is Jordan. I can’t just focus on apraxia. With overlapping conditions, the likelihood of effective treatment decreases if we don’t target those earlier. This is why it’s so important to focus not only on childhood apraxia of speech (CAS) but the whole person.

“Human beings are multifaceted, with many complexities, some rarer than others. In my experience, I have often felt defined by my diagnoses because it appeared that’s all others saw.”

When I went to doctors as a child with my diagnosis of posterior urethral valves, they would look at me and say, “Wow, you have quite a history.” There was never an opportunity to build a connection; instead, a list of diagnoses defined my existence.

As a child, upon first finding out my apraxia diagnosis at age five, my speech disconnected me from the outside world. I saw others connect through verbal speech while I felt isolated, which is why I named my first book series Jordan’s World. When I would speak, others genuinely weren’t hearing me; all they saw was my diagnosis.

The complexities of living with a speech disorder, health conditions, and multiple disabilities made me feel reduced to labels. People interpreted what I must like or who I am based on their interpretations because I couldn’t verbally tell them. Others made broad misconceptions about my future potential based on their perceptions and misunderstandings.

Nobody saw me as Jordan.

In an attempt at freedom, I tried to abandon my past. If I could cleanse my history, others would genuinely see me. However, I didn’t realize these experiences made me who I am. Attempting to abandon my past would only result in self-abandonment. Through these mishappenings, I lost myself.

I didn’t know then what I know now: the only ounce of freedom I could ever sustain is embracing my authenticity and experiences. To fully accept me, no matter how different I might be, was the only way to show the world who I am at my core and one day be seen…

So, I embraced the patterns of my speech.

I embraced the pauses between words, the reattempts, and the gaps between questions.

I started leaving my house, beginning conversations with strangers, and abandoning my troubled patterns of self-isolation.

I embraced my medical scars as they’re a testimony of my resilience.

I put down the mask I wore for many years and found out about my ADHD diagnosis.

Then, in a cycle of self-hatred, I accepted my identity and came out.

Today, I advocate for myself instead of just advocating for others. I speak when it’s uneasy because I don’t know why I would fight to speak physically, only to waste it away without attempting to make a change. I no longer self-isolate. I make friends and go out on dates as an adult with my diagnosis. I work on self-acceptance every day and resist the social pressures that once made me feel like who I was wasn’t okay.

So, no, I can’t just talk about apraxia. People with apraxia are human beings with diverse experiences and co-occurring conditions, and they grow up to become adults. I need others to be seen for their identity and not shy away from authenticity.

In years of speech therapy rooms and tears, I have fought for my voice, from stomping my foot on the ground, hiding under tables, and locking myself in bathrooms not to be seen. The experience has taught me the vital lesson of the gift of speech people do take for granted, and most people can say anything they want to. However, that’s not always promised for me. So, today, when I speak, I only want to speak words representing me and what I want to see in the world. I wasn’t made to fit into this world; I believe I was made to change it.

Today, I want to be seen as Jordan.

From,

– Jordan LeVan