What Down Syndrome Looks Like, Part Two

Today's guest post is the second of a two part series. Part one can be found by clicking this link. If you haven't read it I would strongly encourage you to. It's by Russ Wilson. Russ and his wife Stacy have three children. Their daughter Eleanor was born with Down Syndrome.


When we first found out that Eleanor had Down Syndrome we immediately wanted to read all we could about it. My Aunt Charlotte came through for us with the book Babies With Down Syndrome. It was really helpful.

Many children with Down Syndrome are born with some sort of heart ailment or another and generally have to have surgery within the first 12 months or so.  We were very lucky, Eleanor had no heart issues. 

Did you know that people with DS have smaller passage ways than typical folks?  Nose and ear canals are teeny tiny which means that any respiratory ailments can get ugly quick.  We’ve had to sit up with her elevated on our chest all night long more than once. You’d be amazed at just how many things the Cham Wow can do.

Just about all children with DS are born with low muscle tone.  It’s a weird thing.  It makes them very bendy.  Modesty is not one of Eleanor’s strong suits.  It pushes back all kinds of physical developmental milestones. 

So, what do you do with a toddler with Down Syndrome?  Well, first off, you do the same thing that you do with a typical child.  Hold them, feed them, change them, love them. 

The biggest difference that I have noticed so far is that everything with her has to be so intentional.  We didn’t just sit around and wait for her to roll over, or sit up, or crawl, or walk, or even suck out of a straw (this goes back to the low tone thing), or eat solid foods, or learn words.  

Some of these things they sort of pick up but the vast majority of them take a lot of diligence.  And then some additional therapies.  Most will eventually hit all of the milestones, they just have to work harder for it…

Luckily, the state of Alabama has put some thought into how to help those with delays get therapies early in life which translates to more productivity and quality of life later on. These therapies are available to any child with a 25% or more delay in any area.  For the first three years of a childs life, they receive these therapies through Early Intervention.  I will not bore you with the bureaucratic details involved with this process. 

When they turn three years old, Early Intervention stops (abruptly) and the child then receives therapies at the local public school in the pre-K program.  Pre-K is a BIG, SCARY place.  I know, I’ve been there.  We visited.  Stacey cried. The teacher was great.  The aides were great.  The kids were really great...but those kids were ginormous!  Way too big for our little girl that is in, like, the 5^th percentile on the growth chart.  So, for us, this is going to be put off for a little while.  At least until the beginning of the next school year.

I’m having a hard time trying to decide how to tell you that Eleanor often joins in the ranks of the turdome (one who is with the turds).  I want to paint a rosy picture so that you get the idea of how great she is, because she is!  Very much so.  

However, make no mistake about it, she can be a pistol when she wants to be.  Like so many 3 three year olds, she is stubborn! 

Eleanor begins dance class at a normal dance school in a couple of weeks.  She goes to MMO at a normal church with normal kids.  

She is everything we could have ever asked for.  We thank God for her every day!  I wish everyone was as blessed as we are.