How I Learned the Importance of Communication: A Story of Childhood Apraxia of Speech (CAS)
As a child, one of the hardest things I faced wasn’t just the difficulty in speaking—it was the inability to tell anyone when I was sick or in pain. Growing up with Childhood Apraxia of Speech (CAS), I was constantly battling the inconsistency in my speech. Sometimes, the words just wouldn’t come out the way I wanted them to, or at all. And when I wasn’t feeling well, that struggle became even harder.
I remember so many times feeling awful—my stomach twisted in knots, my head throbbed, and I just felt “off.” But the worst part wasn’t the physical discomfort. It was the frustration and helplessness of not being able to express what I was going through. I couldn’t simply say, “I don’t feel good,” or “My head hurts.” Those words wouldn’t come, no matter how badly I needed to say them. My mom, who became an expert at reading my facial expressions, body language, and energy levels, would have to figure it out herself. She knew me so well, but it didn’t make it any easier for either of us.
I can’t fully explain how powerless I felt during those moments. It wasn’t that my family didn’t care—they cared deeply. But when you can’t communicate what’s wrong, you begin to feel like your needs don’t matter. That’s a terrifying feeling, one I wouldn’t wish on any child or adult. I was stuck inside my own body, desperate to speak, but unable to get the words out.
Why This Drives My Advocacy for AAC
It’s that feeling of powerlessness that fuels my advocacy for AAC (Augmentative and Alternative Communication) today. I know from personal experience how incredibly important it is to have a way to communicate, especially when it comes to something as critical as your health and well-being. No one should have to feel like their needs don’t matter because they can’t speak the words they need to.
For me, the difficulty in speaking wasn’t just a childhood hurdle—it’s something I still deal with as an adult, particularly when I’m sick. CAS is an issue of inconsistent motor planning for speech, which means that, when I’m unwell, speaking becomes even more challenging. The frustration of not being able to say what I need or explain how I feel in those moments can feel unbearable.
This is why AAC is not just for non-speaking children—it’s for anyone who struggles with speech, especially during critical times. Whether it’s a high-tech device or a simple, no-tech communication board, AAC gives people a way to communicate their pain, symptoms, and feelings, even when speech isn’t an option. In moments when I feel sick, having that option can make all the difference.
A Solution I Wish I Had: The Pain & Symptom Communication Board
I wanted to create something that could help others in situations like the one I faced as a child. That’s why I created the Pain & Symptom Communication Board—a free, no-tech AAC resource that helps individuals express pain levels, where they hurt, and how they feel, without needing to use words.
I know how valuable this kind of tool can be because I lived through it. If you have a loved one who struggles to communicate when they’re not feeling well, I hope this resource can make a difference for them. Download it today and give them the voice they deserve.
No one should feel powerless when it comes to their own health. And with the right communication tools, we don’t have to.
— Jordan LeVan, Fighting For My Voice
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