Warts And All


Sure StepsAs if Tuesdays weren’t enough of a zoo–Christian went downstairs to teach with the words, “Good grief! This is nuts!”–I went upstairs to get Julianna ready for swim lessons at 7:10 and discovered her wearing her sparkly new shoes….without the brand new, $1500 Sure Steps that are supposed to be inside them.

“Where are your inserts, Julianna?” I demanded.

She looked at me, lovely and doe-eyed and clueless.

“Where are your inserts, Julianna?” I repeated.

“Because I…” she began.

“I didn’t say ‘why,’ I said ‘where.’ Where did you take your shoes off?”

Fifteen minutes of searching every room, every drawer, every box in the house while Julianna stood at the top of the stairs with her face dropped into her hands, her brain having locked up completely. Fifteen minutes rocketing up a parabolic curve of Mommy frustration. Racking my brain. Thinking:

Did she take them off in the van on the way home from Alex’s piano lesson? But why would she have put the shoes back on? I tied her shoe AT the piano teacher’s house…didn’t she have the inserts on then? Could I possibly have missed that? Did she leave them at the piano teacher’s house?

I called the piano teacher on my way out to the van to check my last brain wave: her backpack.

And there they were: two innocuous hard plastic booties with double velcro straps, cuddled in the bottom of a Tinker Bell backpack for no earthly reason I can discern.

When did she take them off? Did she take them off, or did I just spend fifteen minutes completely flipping out and scolding my daughter for something her PT or her teacher or her para did at school? But why would they have done that? I told them she was cleared to wear them all day on Monday, and this was Tuesday.

We often say of our chromosomally-gifted daughter, “Julianna has a lot going on up there.” But when it comes to really important (and very basic) conceptual questions like “Where are your shoe inserts?”, it is clear that she’s not as advanced as we’d like to believe.

Here ends your “reality check” Down Syndrome awareness month post, shared because I need to be clear that life with DS is not all “unicorns and rainbows.”

7 thoughts on “Warts And All

  1. Mary Anne Flesch

    This is quite a common issue in my house. I can’t tell you how many times both of my non-chromosomally challenged kids sat with their head in the hands or just walked around in circles when they misplaced something that was either important to them or to me. Learning to calm down and think things through when you’re upset is an advanced technique that my 15YO is still learning. They get so caught up in “I can’t find it” to even THINK logically about where it could be, or where they had it last!

    • I knew I would get that reaction. πŸ™‚ My boys do it too and it also makes me nuts. But I think the really hard part with Julianna is that I can’t even ask her WHO took them off or WHERE, because she doesn’t even understand the question.

  2. Holly

    Could it be that she doesn’t want to wear them so she took them off and didn’t want to tell you they were in her backpack?

    Brett will not see his shoes that are right in front of him!

  3. This is the same thing I notice with Mae! I’ll grant you she’s only 19 mos, but basic things that she’s been doing forever will suddenly become confusing. Sometimes I wonder if it’s a problem switching gears. Like, we are going around the store and I’m showing her each thing and she’s mimicking sounds, when someone will suddenly say hello. She usually will say “hi” and wave no problem, but if her train of thought is on a different track she’ll look totally blank as though the person is speaking a different language.

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