The Need To Be Flexible – Musings With Malcolm #6

True story:

I am taking the kids to Georgia to visit family in the van. I look into the rearview mirror and see Malcolm with two of his digits straight up both nostrils. For fear that he is about to start rubbing his brain, I ask McK to tell Malcolm to get his fingers out of his nose.

“Those aren’t his fingers, Dad.”

“Are they yours?


“What are they?”

“His big toes.”


Taking another quick glance in the mirror, I see this redheaded rooster top smiling with both big toes jammed up his nose. His smile is so big and wide that it literally spans beyond the scope of his elevated feet. It’s as if he is telepathically telling me, “Hey fat boy! Try this!”

Damn. That’s flexible.

Don’t believe me? He practically did it again this morning while watching Ice Age: Continental Drift.



Most every child born with Don Syndrome has a condition called hypotonia, or low muscle tone. Some people call it being “floppy”. Malcolm calls it his way of slithering out of things. He knows his body and that he is flexible. He can literally slink out of your hands.

He can also sleep using his feet as a pillow.

He can make a yoga instructor jealous.

I watch him move sometimes and my hamstrings pull with the thought of doing one-fourth of what he does.

But before you think that this “floppiness” is a novelty, remember that muscle tone is needed for so many things. There are muscles that control your vocal chords. They have to be exercised constantly to help him say words. Malcolm does get frustrated because his receptive language is much more sophisticated than his verbal language. In other words, he understands what you say, and he also understands that you may not understand what he is saying. It can be frustrating.

Hypotonia also was a huge part of his aspiration. By the time he was old enough to eat and drink more items (12-18 months), we noticed that a lot of liquid was getting into his lungs. It was bad. Hospital visits because of breathing issues. Emergency rooms. Talk of feeding tube.  So we spent a while, actually a few years, thickening everything so that the muscles that controlled swallowing could be conditioned over time to allow him to not get any in his lungs.

Yep, that’s wild stuff. Even as I type this post Malcolm is on the floor laying down on his stomach raising his legs behind him for prolonged periods of time. Watching it makes my abs get a workout.

However, what Malcolm’s hypotonia has taught me and possibly others is that we all have to be flexible. Literally and figuratively.

And now we understand so many more words and phrases and actual sentences that he uses. For instance, he just said, “Pool?”

Which means he is already taking off his clothes and running back to his room to put on a swimsuit.

Better go. He will leave without me.