What it’s like to not speak

I am proud to be a mother of a child with Cerebral Palsy. From our stint in the NICU when she was born, to learning how to communicate using her AAC device, and to her horse therapy, Jaxlee has moved mountains. I am constantly impressed by what she can do.

And also… it’s hard. Every day there’s some point that is really, really hard. For me, for her, or for both of us.

The older Jax gets, the hardest thing about her disability is her Apraxia of Speech. That’s just a fancy way to say her mouth doesn’t work with the messages her brain is sending it.

“A child with Apraxia of Speech knows what they want to say. The problem is not how the child thinks but how the brain tells the mouth muscles to move.” -American Speach, Language, Hearing Association.

She is sharp as a tack📌 doesn’t miss a beat 🥁 & I joke she has elephant 🐘 ears because she can hear a conversation a mile away even if it’s being whispered… but her body doesn’t work with her brain to say what she wants to say.

You can imagine how frustrating this is for her… and well frankly I get frustrated & impatient too!

It’s hard day to day because she is full of thoughts, dreams & desires but she can’t always get her message across. Which creates quite a barrier for her in many areas of her life 😭😫🥴 her education, her relationships/friendships, simple needs like going to the bathroom… etc.

Y E S she has an AAC device that has opened up a whole new world for her and me (really our entire family) to which I am so incredibly thankful for this technology.

I’d love for you to watch this video. You can see how much work it is for her (4 minutes and 35 seconds of work) just to say she wants to go swimming in a few simple words.