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Friday, June 16, 2017

What is Hypotonia?

What is Hypotonia?

My daughter, C, was two months old when she was first diagnosed with hypotonia -- or low muscle tone. This affects her ability to complete gross motor and fine motor skills.  Due to her hypotonia, her muscles are working overtime -- more than the average child.  

When people ask me what hypotonia is, I often respond with the simplest answer I know -- low muscle tone. "Hmmm..." they usually respond, and then the conversation moves elsewhere. Sometimes, they will follow up with, "So, her muscles aren't strong?" And then that is an even longer conversation; one that I still struggle to fully explain. In fact, that's the biggest issue with talking about hypotonia as a person who does not experience it daily. I do not know what it feels like to live with low tone. And that's a problem.

How can I possibly help family members, friends, and teachers understand the struggles of my child if I do not fully comprehend them?

What Does Hypotonia Feel Like?

I wanted to gain some sort of understanding as to what C felt each and every day, but since she is still young, I decided my best bet would be to reach out to some individuals who have a hypotonia diagnosis and see what they had to say.

While their answers varied, many of them referred to the same couch scenario over and over again, and I found it very relatable:

Hypotonia is like when you come home from a long day of work completely and utterly exhausted. You take off your shoes, you sink into your soft couch, turn on your favorite show, and get super comfy. Ahhhh...relaxing, right?! This is how C's muscles are regularly -- relaxed.

As you slowly savor your moment of relaxation, someone SCREAMS from the other room, "Get in here NOW!"

You know you need to move, and you need to move fast, but it takes a while to gather enough strength to pry yourself off of the couch. It may take you even longer to build up the speed to walk quickly and efficiently into the other room.

This is C’s reality. Every minute of every day, her body is in the “couch state.” And every time she is asked to do something -- sit here, move over there, raise your hand, trace this letter -- her body and her muscles have to get out of that “couch state” -- over and over again.

Can you imagine how exhausting that is? Every day is fight against gravity for her and other kiddos with hypotonia.

[ Image from 'The House Book', Terence Conran, 1974 ]


How Does Hypotonia Affect Everyday Life?

As you can envision from the couch scenario, after a long day of having to “get off of the couch” numerous times, C is very tired, and the other people I spoke with explained feeling the same way. With that being said, I feel that I must mention that hypotonia can and will affect people's lives in different ways -- just as it may feel different from person-to-person as well.

As a result, sometimes C -- like other children with hypotonia -- is slower to move than her peers and she may refuse to do tasks because she is exhausted or because she is afraid her muscles can't do what is being asked of her. She may struggle to sit up right and she may be a tad more clumsy than usual. She may want to be left alone instead of engaging with peers and she may be emotional. Normally, C shows her exhaustion with her emotions.  

And who wouldn’t be emotional after having to “get off the couch” multiple times during a day right after you got so nice and comfy?

How would you describe hypotonia? I would love to hear from you in the comments or via my FB page.



7 comments:

  1. I'm 14 and I have hypotonia. The couch metaphor is very accurate for me. Another way I describe it is feeling like my muscles are cooked spaghetti at times, as my muscles can involuntarily become loose and unstable sometimes.

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  2. Cooked spaghetti noodles -- what a great way to describe it to people who do not have experience with Hypotonia. Thank you so much for sharing. I would love to learn more of your story.

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    1. You have NO idea how much you replying to me has made my day! Thank you!

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  3. Replies
    1. I'm really appreciative of the people who took the time to talk to me and share.

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  4. Hi there! My daughter is 8mo and just diagnosed with hypotonia. I'd love some advice and wisedom if you'd be willing to speak with me?

    I hope you and your lovely family is doing great!

    Thank you,
    Dana

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    1. Hi! Dana, I would love to chat. You can reach me on the Crazy Cakes and Eskimo Kisses FB page.

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