06/03/2025
“I always had thoughts just like everyone else, but they were trapped in the prison of my mind. At first, I couldn't figure out why people weren't responding to my requests. When I was around 5 years old, I remember hearing myself in a video clip. I was surprised that I was not able to understand my own words. I thought I was being clear, but I was mistaken. This made the world a confusing place. I felt like a smart guy who wanted to contribute to the world around me, but for two decades I was stuck being talked at like a dumb kid.”
When he was around six, we thought that might be happening, so we started treating every sound he made as if it was a word, because to him, it clearly was.
We repeated the sound as we had heard it, then said the word we thought he said, and excitedly grabbed whatever it was we were guessing.
If he said “ah,” we said “ah, sounds like wa-ter” and we got a bottle of water. Then we said “wa-ter, wa-ter” a couple times slowly so he could practice. If we had guessed wrong, we kept trying until we found something he wanted, whether it sounded like “ah” at all or not.
We were engaging with him, interacting, being user-friendly, playful, and helpful.
We were showing him his words had power in the hopes he would work to use them more. And he did.
He started to speak more, and his words became clearer. We instructed people who spent time with him to always repeat back to him what he said exactly as they heard it. He always worked to say the words more clearly. He was always trying so hard to communicate.
Now we know that it was never a lack of knowledge or understanding.
It was apraxia, and the breakdown between the brain and the mouth. The words were always there, he just couldn’t get them out.
Now that he can communicate through spelling and he’s sharing his experience, I sure hope parents, educators, and therapists are paying attention.
I hope they take a look at their non-speakers and those with unreliable speech through a new set of eyes.
What if they are totally competent and capable?
What if they’re in there, fully intact, and just trapped?
What if?
And what would you do differently if you believed that they were?
How would you want to be treated if you were the one who was trapped inside a body that didn’t do and say what you wanted it to?
And how desperate would you be to have just one person believe in you?
💙
