When Words Fail Her

I can only understand about 25% of what Charlie says. That is, if she says anything at all.

A lot of the time she grunts or “talks” with her mouth closed. Other times, it’s garbled gibberish. With context clues and effort, I can understand about 25% of what she says.

Tonight, my husband realized that all of those sounds have meaning and we can’t understand most of them.

Charlie was climbing on him and playing with a Little People’s tricycle. She rolled it up his arm, put it on his head, and exclaimed some garbled words. He dismissed them and continued flipping through the channels.

She repeated her gibberish over and over. He realized she was trying to tell him something. After asking her to repeat it a few more times, he deciphered she was actually saying, “It’s a hat!”

He was so impressed with her. But, at the same time, so saddened. He realized her thoughts and receptive language is fine. Her body (more so her mouth) will not do what she wants it to.

Although, I already knew this. It makes me sad as well when I think about it. I can’t imagine the level of frustration, isolation, and whatever else she may feel. I wish her fine motor skills were decent enough for sign language.

However, I try to remain positive and remind myself that she seems happy. The whole ordeal doesn’t really appear to bother her. She is one of the most joyful and enthusiastic people I know of.

Before she went to bed tonight, she said, “nigh” (good night) for the first time. Then, when I told her I loved her, she leaned in and kissed me.

I guess maybe she does communicate in her own way.

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We’ve been visiting Chuck E Cheese’s a lot lately. It’s an easy and fun way to work on most of her therapy goals.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

4 responses to “When Words Fail Her

  • steevbeed

    Between you, you will all get there. I once worked as a live-in carer for a man with severe Cerebal Palsy. For the first month I couldn’t understand most of what he wanted, I had to keep asking for help and became very frustrated and felt useless. Then it started to click, by the time I moved on I could understand every request, conversation piece and obscene aside he uttered.

    Like

  • A Miracle In the Works

    Yay for being able to communicate! It’s so hard to not be able to understand your little one. Roo has excellent receptive communication but struggles so much with expressive too. Luckily, her signing is pretty good. Sigh.

    Love the chuck e cheese hug!

    Like

  • kadiera

    Can I recommend that you seek an augmentative communication evaluation? Having a communication device has been a life-changing experience at our house, and means Alex (who we catch less than 10% of his words at age 6) can talk to anyone. Research also suggests that it’s easier for kids to learn to mimic the device because it is consistent in how it says words, so it can help them speak more clearly. My 3 year old is getting a device too, because her speech, like Alex’s, is affected both by mild CP and by having had a trach most of her infant and toddler years.

    Liked by 1 person

  • Rochelle LeBlanc Maccarone

    I would encourage sign language my daughter approximates a lot of signs but as long as your are there when she learns them her way you will know what she is saying . My Hannah did not say her first word til she was 5 but had been using sign from the age of 3 . Now she is 11 and talks in sentences but not everyone can understand her but with practice I know we will get there and she still uses her signs with the words. Good luck

    Like

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