Friday, July 12, 2013

The Thing About Down Syndrome.

If you've been reading this blog for more than a week, you've probably figured out that I have a two year old daughter who is adorable, causes serious trouble, has a winning smile, and also has Down syndrome.

As I was typing that last paragraph, she knocked everything off the kitchen table, then retrieved a paintbrush and used it to "dry dry dry" up her watermelon mess, then put the paintbrush "night night."

Anyway, moving on.

Since my husband and I knew nearly seven months before Ellie was born that she'd have Down syndrome, we had time to research.  Much of my "research" involved talking to parents about what the reality of raising a child with this particular disability is like.  I heard that the thing about Down syndrome is that the highs are high and the lows are low.  I can't compare Ellie's highs and lows to another child, as Ellie is our first.  I can tell you with 100% honesty that at the moments in which I am most frustrated by developmental plateaus (which seem longer and more frequent in my unofficial study of kids with DS) Ellie pulls through and brings great delight to our family.

In recent months:

Walking.  As in, she does it now.  Ellie loves to take walks.  She isn't great (or willing) on grass, and when she gets tired, she sits down, smiles, and says "no!"  (If you tell her to walk at that point, you can forget the smile.)  But she walks!  She puts both hands on her hips and walks with sass.

Utensils.  Ellie has possessed some utensil using skills for awhile.  It became such a battle that I'd all but given up and was hoping she'd use a spoon by kindergarten.  Ellie has also been dealing with some awful reflux, and basically not eating much of anything.  So this week, I took her to frozen yogurt, or more accurately, sorbet.  Low acid, plus a little hydration... I figured the benefits beat out the bad parenting decision of "ice cream right before dinner."  Ellie picked up the spoon and ate her whole mini-"issssse-cweam!"

Both walking and eating with utensils are skills Ellie could have demonstrated a year ago, but she didn't.  She was right on the edge of achieving those things, and I felt like I held my breath for months, waiting.

Ellie does everything in Ellie's time.  She wants to do things her way, and do them right the first time.



She's not even close to being able to jump, but today she did stand up on our bed and proclaim "frog jump jump!" and bounce up and down a bit.  She did the same thing on a rainy walk.  For awhile, I looked around for the mystery frog before I realized it exists only in Ellie's head.

So that thing about Down syndrome?  Maybe it is harder.  Or more celebratory.  Probably both.  But the thing about Ellie?  She's a riot.*  So I'll take the lows and the highs and the in betweens, the imaginary frogs and the walk that still looks a bit like a drunk muppet.

* Except for last night.  She screamed through a two-hour girls night with Christina and I.  She distracted a band performing.  



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4 comments:

  1. Drunk Muppet!!! LOL. I love that she's finally walking! And I totally know what you mean about being on the cusp of a milestone for so long. I think our kids hold out on us just because we're so amusing to watch as we model it over and over again. Great job, Ellie!! Can't wait to see you again!

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  2. I love your little riot. I am so glad God gave her to you.

    You are a great Mommy. You inspire me.

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  3. Oh my....Drunk Muppet! Love it! Yes, the cusp of milestones is a very trying place to be. Hailey also does the saying a word crystal clear and then never repeating it again (or waiting months before she shares with us again!). Love all the pics of Ellie walking. It does change your world!

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  4. I love tp see that she's walking!!! That was a very difficult milestone for us to, but once they're going nothing can stop them now! LOL!

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