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More than Words

More than Words

One thing I have recently learned in my journey raising a child with disabilities is just how much communication there is without uttering a single word. My daughter Stella is completely non-verbal, but that definitely does not mean she does not have a lot to say.

It was a lot harder in the earlier days trying to understand her wants and needs without the typical ways of expressing them. It was a ton of trial and error that left us both really frustrated. I am not going to lie, there were a lot of tears shed on both of our ends. 

As time passed, I began to become more in tune with what she was trying to express to me. The certain little noises she would make to let me know she was tired or hungry. The sweet little happy coos when she is particularly happy with a situation, which is like music to my ears. The loud burst of squealing laughter when she can not contain her amusement any longer. 

She has become so expressive with her eyes.

Gazing towards things of her interest bright-eyed, or a furrowed brow when she is no longer interested. Heavy slow blinks when she needs rest. Sometimes I feel like we have such in-depth conversations with our eyes alone. 

We are working on new avenues of helping her communicate on a more specific level. We have been working with adapted buttons that allow her to express when she wants more of something or when she is done. We are also working with an eye gaze device. She can use her eyes to move the mouse to play games, music, and pick out shapes and colours. The end goal is to be able to use her eyes to communicate further and allow the device to be her voice. 

Another thing we have been working on is allowing Stella to communicate choices.

Through therapy, her motor planning has greatly improved, so she is more able to reach towards things she is interested in. I always want her to be able to have opportunities to express herself and make her own decisions. I have been trying to make more of a habit of allowing her to pick between things such as toys or clothing.

It’s important to remember that people that can't communicate in a traditional sense still have a prerogative about things. Anybody that knows Stella can tell you that she is a very opinionated little girl. Sometimes the issue is not as much of them not speaking as it is people not truly listening.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sarah Kirkpatrick

Meet Our Blogger

My name is Sarah Kirkpatrick. I am a hair stylist from Alabama. I have one amazing daughter who has quad cerebral, dystonia, and HIE. I love all things art, music and cats.

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