This is the uplifting message of hope in a book titled, “The Boy Who Couldn’t Speak, Yet,” written by Jordan Christian LeVan and illustrated by Isabella Millet.
Several times over the years I have come into a room to find Pam on her phone listening to something in tears. When I get closer I hear a familiar voice in a distinct tone. The voice belongs to Jordan, who through his online blog and Facebook page provides “an inside view on what it’s like to live with verbal Apraxia.” Jordan is an inspiration as he has overcome his disability and just last year graduated with a Bachelor of Arts in Psychology with a concentration on mental health from Guilford College in Greensboro, N.C.
Like our 11-year-old son Carson, Jordan was diagnosed with Apraxia at a young age. Apraxia is technically defined as an uncommon speech disorder in which a child’s brain cannot develop plans for speech movement. The solution is intense and regular speech therapy where a child learns how to use speech muscles to move lips, jaw and tongue to accurately make sounds. It’s a long journey, one with mixed results for our Carson.
Carson will make sounds and put words together in his speech sessions. It’s a major struggle and hard work, however. His anxiety over how he sounds and the fact the words do not come out consistently team to make him essentially mute at this time. He will only talk for a few people on a limited basis. He’s shy and it’s difficult. He has no speech outside of speech therapy and with his parents. It doesn’t seem to bother him. It’s a problem for us, as we worry about his adult life and how he will function.
This fact is why Jordan’s journey to find his speech is so inspiriting. In his bio on his website, Jordan wrote, “My childhood had an emphasis on my need for communication. I didn’t let Apraxia stop me, although growing up with the diagnosis was overwhelming. … The reason I named my blog ‘Fighting for my Voice’ is that I did fight for it. I was the one in the speech therapy rooms desperately wanting to give up, but somehow still kept going. I would soon grow up and face challenges of my own and dealing with society, and having to learn how to advocate for myself. … Young people and adults with speech disorders are often ashamed of their diagnosis. This is showing you a different way of living. You don’t have to stay silent, and you don’t have to speak like everybody else. You can only be you. I found my voice whenever I started speaking my truth when I owned my diagnosis. Whenever I started pushing myself to speak, even when I didn’t want to. When I was afraid to. Whenever I was scared to. You are more than a diagnosis.”
Jordan’s book tells his story of navigating through school’s challenges while being different. The book encourages kids to not judge a kid by a disability, reminding “the next time you see a kid like Jordan who can’t speak yet, include them. Make sure to smile and wave! We can express communication in so many ways.”
Included in the book is a poem about Jordan by Laura Baskall Smith, titled “I Am The Child.” It reads,
“I am the child who didn’t have a word.
I am the child who fought to be heard.
I am the child who others counted out.
I am the child with whom others had doubt.
I am the child they questioned could learn.
I am the child who would silently yearn.
I am the child with an invisible scar.
I am the child ‘who has come so far.’
I am the man that others didn’t see.
I am the proof that a fighter was in me.
I am the voice for those yet to be heard.
I am their advocate until they too can find the words.”
To be honest, there are days when I wonder whether Carson will ever speak. Maybe Pam and I are too enabling. We are too caught in daily life to truly wage a war with our child on his speech. Should we not feed him until he says he’s hungry? Are we doing him a disservice by not being more forceful? Are we wrong to bow to explosive behavior and tantrums when we force speech? It’s a daily struggle with no easy answers.
We want him to live a happy, productive life. I am confident he will due to his work ethic and patience.
Carson deals with more setbacks on a daily basis than anyone should. His lack of speech is only one part of his disability story. There’s Autism, Duplication 7, ADHD, OCD and some other acronyms. It’s a roller coaster ride, but stories like Jordan’s serve as motivation. Today his book ranks in the top 10 in children’s books in several categories on Amazon. His daily video posts on Facebook confirm our kid can overcome his Apraxia, but it will require a lot of work and focus.
Carson’s journey is not complete. We do believe in our hearts he will speak. We pray for it. We work for it. We pay for it through speech therapy. We would sacrifice whatever is necessary to provide him a voice. He is not there at this time, but nobody is giving up on him. He will talk. It just hasn’t come.