Low Muscle Tone

It is not new information that people with Down syndrome have low muscle tone.  It makes physical activity challenging.  It's not that they can't do things, it is just means that it takes more effort, more work.  Hailey's PT once told me that Hailey walking 10 feet was like a typical child walking 100 feet.  There are also varying degrees of low tone.  Hailey is high low tone (not sure if there is a technical term).  She has always been very gross motor driven.  She is always moving and always has.  From day one.  On the flip side, I know several kiddos that are on the opposite end of low tone...they have very low, low tone.  It takes them much longer to reach those physical milestones.  They are content watching the action than joining in. 

Something I didn't realize when Hailey was little is that low tone not only affects the muscles that we automatically think of...skeletal muscles...quads, biceps, etc.  Low tone also affects facial muscles (including the tongue) which makes it more difficult for children with Ds to speak.  It can also make feeding difficult for children. 

There are internal muscles that you don't think of either.  It can affect their bladder and their ability to hold urine.  This makes potty training more difficult and in many times delayed.  None of those scare me as much as her lungs.  Kiddos with Ds are much more susceptible to respiratory illnesses.  Colds, whooping cough, the flu, RSV,, pneumonia....they all terrify me.  We try to quarantine the boys as much as possible when they are sick.  We use a lot of sanitizer and we wash our hands nonstop.  I know so many little ones with Ds that end up in the hospital with just the common cold.  These respiratory illnesses can be life threatening to them because their lungs are weaker.  All of us get the flu vaccine every year to try to keep it away from Hailey.  I am a little nervous about preschool.  There are so many bodily fluids with preschool and they are all so touchy-feely.  I'm hoping by the end of February, some of the yucky stuff will be gone.

On the flip side, children with Ds give the world's best hugs :-)  With their low muscle tone, they seem to meld into your body.  Their snuggles are the best!


In case you were wondering, only affected Hailey's eating for the first 4 months (before open heart surgery) and with the straw...as you can see, we have no feeding issues!

 

The boys eventually just gave her the entire bowl because she kept swatting their hands away!