Julianna in the Spotlight

…in honor of Down Syndrome Awareness month.

#1: Julianna and Lightning

Julianna has discovered the beauty of lightning. “Oh, eet ees pwetty!” she says, pulling up the shade to look beneath it. But only during the day. At night she still screams and has to sleep with Daddy when a storm wakes her up. Which is why Wednesday night, every time a distant rumble of thunder signaled the approach of another line of storms (and there were many), I went into her room and turned the lullaby CD back on. I did that three times in the night, in case you were wondering. But it seemed to work.

#2: Julianna and dangerous consonants

Tuesday evening she was reading books on the iPad while she waited for Alex’s piano lesson to be finished. We were on a razor-thin schedule, so I told her to pack up with five minutes to go. She perched on the end of the couch. “Mommy, can-can-can you fowd?”

Envision me turning that one over in my mind. Foe. Fold. Ford? Fold? “What do you mean, fold? Fold the iPad?”

“Yes!”

“Julianna, that doesn’t make any sense. Just give it to me.”

When the iPad launched across open space, I realized, rather belatedly, that “Fowd” was supposed to be “Throw.” As in, “Can I throw you the iPad?”

#3: The unexpected interpreter

For a child I have so much trouble understanding, it is ironic that on Thursday morning, Julianna was the one who interpreted one of Michael’s words for me. He’s been pointing outside through the week’s storms (reminder: there were many!) and shouting, “Wah-tee! Wah-tee!”

Now, “Water” is either wawa or wah…trrrrrr, so I was completely flummoxed. “Water? Raining?” I said. “I don’t understand, Michael.”

Julianna sighed. You could almost see the face palm. “No, no, no, no. Lightning, Mommy.”

Oh, lightning. Why didn’t I think of that?….

#4: The I-Know-I’m-The-Center-of-the-Universe

She comes up from religious ed to choir practice at 8p.m. every Wednesday and never fails to enter with aplomb. But even for her, this week was notable. “Hey! Hey! Eveebody! Wait, wait, WAIT!”

Once everyone’s attention was on her, she sort of self-destructed for a minute. “I-I-I-I, guess what?????!!!!” (Yes, every one of those punctuation marks was in her speech. I swear.) “Guess WHAT?????!!!!! I-I-I-I- have lockdown dooweeel! In-in-in-in my CLASSROOM!”

(That would be “lockdown drill.” Drills are a big deal to Miss Jujubee.)

#5: The Oblivious-To-Reality

Wednesday night after choir, Christian asked Julianna if she’d used the bathroom. Assez facile. Or not.

“Yes!” she said.

“You used the bathroom? Are you sure?”

“I-I-I aweee deeed!” (Wye-Dee, “already did,” has become more subtle in recent months.)

“You did? I don’t believe you. When?”

“Um-um-um, on FWIDAY!”

#6: The Time-To-Grow-Up, Tinkerbell

When I came into her room this week and found three sets of pajamas and four sets of clothes, along with dirty underwear and socks, on her floor, I sort of, uh, lost it. I’ve been on the boys for months, thinking to get them into good habits and then, when I don’t have to ride them so hard, focus on getting Julianna on board. But this was ridiculous. She and I had quite the “come to Jesus” meeting. For goodness sake, I told her, you are seven years old. You are not a baby anymore. You can’t act like one. You have to clean up your clothes! And put them away where they belong! Poor girl was too stunned to be upset. Ahem.

#7: The Consummate Manipulator

Julianna had a substitute swim teacher last week. Young, good-looking guy. No earthly idea what he was walking into. She giggled, she simpered, she charmed…and she did not one lick of work. I was only half paying attention, being deeply involved in my mobile write-at-home mommy gig, until he got out of the pool and came over looking forlorn. “Um, can you tell me how they get her to work?”

“What do you need her to do?” I asked, setting my computer aside.

“Um….everything.”

Bonus: Mean Mommy Really Does Love Her Girl

I started to tell what I did to get Julianna to cooperate with her sub, but the fact is, it sounds mean. There’s a woman I know who works closely with people with Down syndrome, and she is as passionate an advocate for them as she is committed to the idea that we can’t pander to manipulation. People with DS struggle with “intellectual quotient” but very, very often they are off the chart on “emotional quotient.” This means (among other things) Julianna knows how to get out of anything she doesn’t want to do by using her disability to her advantage. Julianna likes to pretend she doesn’t understand. Sometimes she genuinely doesn’t. Sometimes she’s just jerking the marionette strings.

I love on her and hug her all the time, but I’m also trying to learn to treat her like an ordinary human being who has ordinary expectations and standards for behavior. It’s very hard. The instinct is to protect and the exhaustion level pushes me to save the battle for some other time, when _______ (a time that never, ever comes).

So I am a mean mommy. And a loving mommy. And no, they aren’t mutually exclusive.