Sunday, March 28, 2010

Light as a feather, STIFF AS A BOARD

Being the parent of a child with special needs, certain phrases and terms draw more attention than they did before.

“Not normal” is a phrase that is not socially acceptable when referring to a child who is differently-abled.

To me, though, it doesn’t always suit.  I have no problem in saying that Piper has an abnormal ability to win over a crowd.  She has an abnormally infectious smile, and her patty caking is abnormally silly.  Abnormally small?  Yup.  Those don’t bother me one bit.

Sometimes kids just don’t fit the “normal” moniker, and it’s not a big deal to me to admit that all kids have areas in which they are not normal.  It’s what makes society interesting, after all.

Kids with Ds tend to have low muscle tone.  Piper’s lowest tone is in her core and her upper arms.  We focus on those areas more often than “typically developing” (notice that it’s not “normal” here) kids have to in order to give her a hand so that she can accomplish her milestones just as her peers would.

Her legs, however, are another story.  She definitely does not have “normal” Ds muscle tone below the waist.  In fact, we have quite the opposite problem.  Becky says it’s because she didn’t spend any time “cooped up” in utero since she was born early.  Her extender muscles work just fine, thank you very much. 

Piper enjoys being straight.  Board straight. 

This is Luke trying to get Piper to transition from laying down to sitting up.  Ideally, he should be able to hold down the top hip and she should push up with her bottom arm.  Can you tell how well it works???  Notice the muscle flex in her legs.  Even her toes are tensed.  Apparently flexing her face helps, too.

P1040462This is a little harder to tell, but her feet are on the floor, and her chest is above the ground on my hand.  I can literally pull her to standing straight from this position (hopefully Becky’s not reading that part, lol…)

It makes the weight-bearing part of her job a lot easier, granted.  But crawling?

Last time I checked, crawling required bending.  


  1. We have strong arms, weak legs, and if you try to set Max down in a standing postion he bends over at the waist and curls his legs up! They need to get together and show each other a happy medium :)
    True individuals, Ds or not!

  2. We have the same issues, strong legs, weak arms and shoulders. She is such a cutie, love that she has an opinion.