31 for 21... Why doesn't Micah walk yet?

My friend, Colleen, asked for more information about Micah's lack of walking (Thanks for asking! It's awareness month, after all, and I'm happy to address any and all questions about Down syndrome or Micah).  Yes, that's right. Micah will be three years old in January and he still doesn't walk. He hasn't taken an independent step. But he's starting to pull away and stand by himself, which is progress.

There are four contributing factors to the *general* delay of walking in kiddos with Down syndrome (keep in mind that there is a huge range, just as there is in typically-developing kids, but the mean age is later and thus the range is larger):

1. Hypotonia
2. Ligamentous laxity
3. Decreased strength
4. Short limbs

(I'd like to add "stubborn" to the list, in direct contradiction to those of you out there who think that children with Down syndrome are always sweet and happy...) :-)

Hypotonia is one of the first indicators of a need for testing when a baby is born without a prenatal diagnosis of Down syndrome.  Our kids can be referred to as "floppy" at birth.  As they grow, it often takes longer for them to be able to pull their head off your shoulder, push up on their hands while on their tummies, etc.

Physical therapy needs to be viewed long-term.  Kids who have hypotonia have great opportunities to "cheat."  For example, they can go from tummy to sitting by doing the splits.  So, it's important to teach them the proper way to do physical movements that will build their strength rather than just letting them take advantage of their flexibility.

Micah has fabulous posture.  I credit that to his early work with his PT in Wisconsin.  She didn't let him cheat.  She made him work.

When we were in Orlando at the NDSC convention in July, I attended a six-hour seminar with Patricia Winders, PT.  And we had the privilege of her evaluating Micah's walking skills while we were there.  She's done a lot of work with kids with Down syndrome over the years.  Here's an article she wrote back in 2001.  There's a bit more to update since then, but I won't overwhelm you with reading.

But here's a breakdown of the average age when walking occurs:
27% by 20 months
54% by 32 months
15% by 32 months
4% by 58 months

So, 96% are walking by 32 months.  Micah is definitely an outlier.  But he's getting closer.  One of the things that will be a big barrier now is that he's getting close, but he's also getting ornery.  Yes, it's true.  Micah is officially a "terrible two."  He has learned the power in the word, "no," and he is using it.

Micah wears orthotics called Sure Steps.  He's had them for almost a year.  They are made of a flexible plastic that stop at the ball of his foot, so they support his ankles, but don't inhibit him from doing a toe push-off.  He became much more confident standing up (holding onto something) when we put them on him last December.

Micah is starting school soon (January at the latest, but maybe for a couple of weeks in December).  I'm hoping that being around other kids his age will motivate him.  He might do better being pushed by someone other than myself.  He's doing better.  And he'll get there... at his own pace.