Jordan Christian LeVan is the author of the Jordan's World Trilogy, children's picture books that focus on his own experiences with childhood apraxia of speech. He is the president and founder of The Apraxia Foundation.
Q: Why did you decide to write this trilogy based on your experiences as a child with verbal apraxia?
A: When I was growing up, I didn’t know anybody else with my diagnosis of childhood apraxia of speech. I was diagnosed at age 5 with the speech disorder; however, I struggled for many years before knowing the name of it. I couldn’t speak in word approximations until I was 8, and the sentence level l was able to achieve at age 12.
Throughout this journey, I didn’t know anybody else with my diagnosis. I always felt like I was the only one, and I felt a lot of feelings of isolation. When I would watch television and read books, I never saw anybody else with childhood apraxia of speech.
My mission is to be the person I needed when I was younger, and it’s so crucial to me that others don’t feel alone on their journey with childhood apraxia of speech. The book series has successfully done that, which not only for me as an author but also as an advocate gives my heart so much joy. Kids will point to my book's character and say, “He’s just like me!”
And that sentence alone, coming from a child with childhood apraxia of speech, is why I decided to write the trilogy series of Jordan’s World. If only one child doesn’t feel alone on their journey, my life struggles and challenges with adversity are so worth it.
Q: How did you first learn to advocate for yourself, and what impact did that have on your life?
A: First, learning to advocate for myself came in different ways, and each time felt like a stepping stone to achieving greater self-advocacy. Specifically in terms of my speech diagnosis, I couldn’t advocate for myself as a child. I grew up nonspeaking. I wanted to speak, but I physically couldn’t.
So my mom was my advocate, and she was quite a force to be reckoned with. She taught me never to be afraid to use my voice. As I grew up and underwent years of speech therapy to speak, she taught me how to advocate for myself.
When I experienced my early adulthood years and went to college, I learned how to advocate for my 504 plan and to ensure my accommodations were being met. I spent many days on the phone with my accommodations center, and learned accommodations are a fundamental human right under the law — not a special favor.
In adulthood, I’ve discovered how to advocate in multiple aspects of my life. Advocating for myself has significantly impacted my quality of life and how I feel about myself.
As a child, I would self-internalize my feelings and thought somehow there was something wrong with who I am. Now I know there’s nothing wrong with the way I was created, and it’s all part of a bigger societal picture than I could have ever imagined. This is why I chose to become not only an author but also an advocate.
Q: What do you think Isabella Millet and Karine Makartichan's illustrations add to the books?
A: I have to sincerely thank them from the bottom of my heart for capturing and for working with me so closely to bring to the page what I saw through my eyes as a child. The illustrations are based on pictures of my school, classrooms, and even classmates I attended school with. The book series is children's nonfiction, so even the illustrations needed to be true to life.
Of course, there’s my special twist on some that have hidden symbolism and messages. It’s imperative to me, not only as an author but as a person who has struggled with communication, that I utilize multiple ways to communicate and interact with my readers who read my series.
When I read Jordan’s World now, it’s like I’m flashing back to that same 5-year-old boy again; it’s something I’m quite grateful for that these illustrators were able to do for me and others who read the series.
Q: Can you say more about what you hope kids take away from your books?
A: I hope they take away, most notably, the message that it’s okay to be different and to be who you are. The concept of Jordan’s World is very distinct, I believe, and personal, which is why it was vital for me to initially self-publish.
Together, the three books in the series tell the story of how I was essentially trapped in my brain as a child, unable to communicate with the outside world. Although I wanted the world to be more accepting and loving — which is what my inner world (otherwise known as my brain) looked like — it didn’t match the outside world.
Jordan’s World has very unique messages of overcoming adversity and ends with life lessons I have learned. While reading the books, you can expect kids to take away that everybody can come to a place of self-acceptance and self-love, that nobody can predict or determine your future, and to be proud of the person you are. These are three life lessons that have been absolutely life-changing for me.
Q: What are you working on now?
A: I’ve been working on so much, but one of the most exciting things I am working on is my book tour. I will be reading my books to kids and meeting the families I advocate for. I’ve had so much fun creating the event schedule and planning these tour stops for families, as I believe life is all about the relationships we make with other people.
I’m also working on my autobiography, which I will admit is a bit more of a heavy to work on. I’ve spent over a year writing it so far because my voice must always remain my own. There are certain things I wanted to leave out at first; however, my child-self must be heard. I give him the voice he always deserved.
There are so many other things, such as my nonprofit work for The Apraxia Foundation to help families afford research evidence-based services and augmentative and alternative communication, passing laws for people with disabilities, and much more. My heart is on fire for advocacy, so I like to stay busy.
Q: Anything else we should know?
A: I believe it’s to please know that you are never the only one who is going through your particular struggle in life. Because everybody struggles in some way in life and, for me, it’s my speech. But this doesn’t mean people who don’t struggle with spoken speech also don’t struggle. It doesn’t mean we have to be ashamed of our struggles and hide away in fear.
A message I wished I had learned sooner is that I’m exactly the person I was meant to be. For so many years, I felt the need to conform and to blend in because many times, as a child especially, that was safer than the alternative.
However, we don’t have to blend in or be ashamed of our struggles or who we are. When I was able to radically accept the person I am, I was able to take my shame and make it very small because my life mission is to help other people feel less alone and more loved in this life.
--Interview with Deborah Kalb
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