Colton and his Brave Journey Through Childhood Apraxia of Speech and Other Challenges

Colton and his Brave Journey Through Childhood Apraxia of Speech 

Colton is a bright, funny and determined little boy who has already weathered more than most adults ever will. He’s full of curiosity, always asking “why,” loves to draw and build, and has a laugh that’s truly contagious. But behind Colton’s smile is a long list of diagnoses that he carries with incredible strength and resilience.

Here are the medical and developmental conditions Colton lives with:

• Childhood Apraxia of Speech (CAS)
• Phonological Speech Disorder
• Language Disorder
• Sensory Processing Disorder
• Auditory Processing Disorder
• Congenital Hypothyroidism
• Mild Cerebral Palsy
• Autism Spectrum Disorder, Level 1

And due to whole genome sequencing is at risk for developing epilepsy and type 2 diabetes.

That’s a lot for one little boy — and a lot for us as his parents, teachers, and doctors to consider in supporting him. But let’s start with the condition that first caused us to take a closer look: Childhood Apraxia of Speech (CAS).

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What Is Childhood Apraxia of Speech (CAS)?

CAS is a rare and severe speech disorder. It’s not caused by weakness in the muscles used for speech. Instead, it’s a neurological motor planning issue — the brain has trouble sending the right messages to the muscles of the mouth to make speech sounds correctly and consistently.

In other words, Colton knows what he wants to say. He has thoughts, feelings, and ideas just like any other child. But his brain struggles to coordinate the complex movements required to form words and speak them clearly.

Imagine trying to type a sentence on a keyboard where half the keys don’t respond when you hit them — or worse, they type a completely different letter than what you intended. That’s what speech can feel like for a child with CAS.

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Colton’s Early Signs

Unlike some children with CAS, Colton was a NOT quiet baby — alert and socially responsive and babbled up a storm. His first word was at 6 months. By 12 months he had the vocab of a 24-month-old.  But then, regression hit, and eventually between 18 months and 2 years of age, not only did he stop adding to his vocab, he lost all the words he had. At that point, when he did try to talk as a toddler, his words were limited, unclear, and extremely difficult to understand. He often became frustrated when others didn’t understand him — and we could see how hard he was trying. [This was one red flag for ASD that was missed- speech regression should have been taken more seriously by his pediatrician at the time, who was older and near retirement, a point I am noting that his education on autism was probably quite dated- that because he could smile and make eye contact that he couldn’t be autistic.]

Despite those efforts, his speech development didn’t follow the typical path. He couldn’t imitate sounds well, even with help. He’d try to say a word several times and it would come out differently each time. This inconsistency is one of the hallmarks of CAS. But through in the signs of Phonological speech disorder as well, and Colton was definitely a tough nut to crack.

When he was finally diagnosed, it was both a relief and a new worry. At last, we had a name for what we’d been seeing — but we also learned that CAS is a lifelong challenge that requires intensive, specialized speech therapy. It’s not something kids “grow out of.”

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How CAS Affects Colton’s Life

CAS makes daily life harder in ways that most people wouldn’t notice at first glance. Colton has to work so much harder than his peers just to say a word or ask a question. Imagine how exhausting that must be — especially when your body and brain are also dealing with other diagnoses like sensory overload, motor coordination difficulties, and rigid thinking patterns.

He sometimes gets overwhelmed when he can’t express himself quickly enough. His frustration can come out as emotional dysregulation — not because he’s being difficult, but because he’s hitting a wall between what he wants to say and what his body allows. Topped off with some form of social anxiety from years of not being understood well and his other comorbidities, it makes it hard to handle certain situations. He simply gets overwhelmed.

And thanks to his dedicated speech-language pathologist, he’s made incredible progress. His vocabulary has grown. His speech is more understandable-from non-verbal at age three, 25% intelligible at age 5, to 80% at age 9. But the journey is far from over.

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CAS and Its Link to Autism

As Colton’s care team expand and more layers of his development were explored, it became clear that Childhood Apraxia of Speech was not the only piece of the puzzle. His challenges with communication weren’t just motor-based — they also involved language comprehension, social interaction, sensory regulation, and rigid thinking.

There’s growing recognition among professionals that CAS and Autism Spectrum Disorder (ASD) often co-occur. While not every child with CAS has autism and vice versa, research shows that children on the spectrum are more likely than their neurotypical peers to have speech motor planning difficulties like apraxia. Some studies estimate that up to 63% of children with apraxia may also meet criteria for ASD.

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Why It Matters to Share This

Talking about CAS — and its potential connection to autism — matters because so many children are missed, misdiagnosed, or misunderstood. A child with apraxia might be seen as stubborn or inattentive when in reality, their brain just can’t coordinate the speech and social skills the world expects from them.

Colton’s story is just one example, but it’s a powerful one. It shows that early signs matter. That speech is more than words — it’s connection, confidence, and identity. And that children like Colton need a village of understanding adults around them who see their potential, not just their struggles.

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What’s Next

In upcoming posts, I’ll explore Colton’s other diagnoses — how they interact with each other, what they mean for his learning and development, and how we support him as a family. Every condition brings its own challenges, but also its own insights into how the brain, body, and spirit work together.

If you’re a parent walking a similar road — or if you just want to understand more about kids like Colton — stay tuned. We’ve got so much more to share.

And to Colton, if you ever read this one day: you are fierce, you are funny, and you are so deeply loved.  You are my soul, Little Man.