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T21 Tidbits :: What is hypotonia?

Have you ever heard the term hypotonia, or low muscle tone?  This may be one of the most common characteristics in individuals with Down syndrome.  And it took me a while to truly understand exactly what it is and how it affects Beau.  Simply put, low muscle tone is a lot like muscles that are very relaxed.  And if you have ever had the honor to hold a little one with an extra chromosome you are nodding your head because you know the experience was a little different than holding a neurotypical baby or toddler.  They just melt into you like a little rag doll and it will steal your heart right out of your chest.  They are more squishy and they are the best at snuggling.  It also helps them to be super flexible. Hypotonia does not only affect the Down syndrome community, but it is a common thread (or superpower) that people in the community share.  Scientifically speaking, muscle tone is regulated by signals that travel from the brain to the nerves and tell the muscles to contract (National Institute of Neurological Disorders and Stroke). 

One common misconception that many (including myself at one time) have is that muscle tone and muscle strength are related or even the same thing.  Nope. Apples and oranges.  Muscle tone has nothing to do with muscle strength, although it is possible for one to affect the other.

  Please come wrestle rock Beau to sleep at bedtime one night and you will see he lacks no stregnth.  😜

I found this great list of facts about hypotonia that really help explain the condition.

Just remember:

  • muscle tone and muscle strength are different things, but can overlap
  • every achievement (especially motor related) takes extra work and effort to achieve
  • there is no "cure" for hypotonia....no surgery or medication will "fix" it. A child does not outgrow it, but learns ways to cope and build strength and correct placement of body parts for optimal movement. This is why physical therapy is important!
  • Kids with hypotonia use extra effort for simple, everyday movements so be patient when they need a break and you cannot understand why.
  • There are over 600 conditions that can be associated with hypotonia...not just Down syndrome.
  • "Wait and see" is not a good approach to treatment. Seek therapy and services to address hypotonia as soon as the diagnosis is delivered.
  • Don't compare a child with hypotonia against "typical milestones" for motor development, but be prepared for these kids to surprise you!
Thanks for learning about hypotonia with me.  Our bodies are amazing works of art created by a God that embraced differences and cherished children.  I welcome any questions, thoughts, or feelings about hypotonia or Down syndrome in general.  Blessings!

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