Frustration With The Unknown

Out of all the long term complications from Charlie’s premature birth, her speech delay is currently my biggest concern and the most frustrating.

Why? It’s because I don’t understand it. Every few days, Charlie will communicate with me very well for one short exchange. It goes something like this:

“Mama!”

“Yes Charlie?”

“Ba ba” while she signs that she is hungry.

“Do you want a bottle?”

“Ya!”

I am ecstatic after an exchange like this. I think, “Oh, she finally has it!” However, the excitement is short lived.

Immediately afterwards, she regresses to babbling like a six month old. She understands what is said to her. She tries to repeat words but is only successful about 10% of the time.  She utilizes the signs she knows often. It seems she is having trouble forming the words with her mouth.

Her speech was predicted to improve as her oral aversion decreased. Her oral aversion is almost non existent (Yay!) but her speech progress is stagnant.

My frustration is not so much that her progress is moving incredibly slow. I have learned to be patient. Rather, my frustration stems from my poor understanding as to what Charlie is struggling with. Her therapists aren’t exactly sure. I lack resources from which to learn about the issue. I am stuck for the moment.

Charlie has her 18 month well visit next week. I plan to discuss my concerns over Charlie’s speech.  I hope the pediatrician can help me understand.

How can I help or teach Charlie if I don’t understand what the issue is?

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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

9 responses to “Frustration With The Unknown

  • christine

    Have you had a speech evaluation outside of feeding? I am getting pretty frustrated with my current speech therapist for my daughter. I don’t really feel like a whole lot more is happening than I was already doing. On my own. She only comes monthly so we’ve only seen her about four times. In the meantime you might be able to google some exercises to help strengthen the muscles in her mouth. There should be lots on ideas.

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    • Becca

      We have stepped up her speech therapy to more frequent appointments. I’m going to see what the pediatrician thinks. Maybe it is just a matter of her explaining to me what the issue is. Thanks for your comment.

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  • swensonkate

    I can really relate to your post. My son also has has a speech delay. A pretty significant one. And so much more goes into it than just speech. Emotions, fear, frustration. Good luck to you and Charlie!

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    • Becca

      Thank you for letting me know that I am not alone with all of these emotions. Let me know if you find something that works well for you.

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      • findingcoopersvoice

        Oh I so wish I did. Signing has been huge for us. Cooper knows the basics. Speech therapy has also been life changing. We also do a lot of pointing. Pointing to flash cards. Pointing in books. What else…singing songs has been huge. Itsy Bitsy and Wheels on the Bus. After each verse wait for a response. And give lots of choices. Do you want milk or juice? Train or truck? We make Cooper choose constantly. It’s a lot of work! Good luck!

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  • Julie W.

    I have 24 week twin boys who just turned 18 months as well. They just started babbling a few months ago, and we have no words yet. Your conversation sounds amazing! They have no oral aversions or feeding issues, so it’s like you said, just waiting for them to make the connection. One of them just started signing a few signs reliably this week, hopefully the other one isn’t too far behind!

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    • Becca

      Oh! How wonderful that one has started signing! It was so helpful when Charlie learned to sign she was hungry. She also uses the sign for “all done”. Let me know if you come across anything that helps! It can be a team effort! 🙂

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  • thebabydinosaurismine

    Aaaahh, this has been our life for the past year. I have no advice, just kind words to say that I feel you and that you are the strongest for pushing through. A speech therapist recently told us that sometimes being supportive is the best we can do. I think he meant being supportive of the kids, but I offer some of that support to you!

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  • judy

    I definitely don’t want to discredit your concerns, but I do just want to share that my toddler didn’t really start talking until he was almost two. He had a few words that started to come around 15 or 16 months, never even put two or more words together as a “sentance,” and he really stalled for speech until shortly after his two year birthday. He obviously understood when we talked to him, but he didn’t start talking until age 2. Now he is extremely verbal, and it came really quickly! I just share this so you know that even average development accounts for late speech. I hope this is helpful!

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