
Julianna has a pair of pajamas covered with strawberries. It says, “Being cute gets me out of jams.”
I bought it for her, partly because we love strawberries and it’s a darned sight better than Disney Princess pajamas. (Or Dora, or Tink, or any other licensed character. I can’t tell you how much I loathe licensed character stuff…at least, for girls. Not the superhero boy stuff, just the girls’ stuff. Yes, it’s irrational.) But there was another reason. As soon as I saw that pajama set, I said, “Holy cow. That’s Julianna. Right there, in a nutshell.”
She’s entering a tricky stage—one I expect to last, uh, the rest of her life, based on what I hear about people with Down syndrome. Most kids grow in understanding of appropriate behavior parallel to their increasing communication skills (both receptive and expressive). But Miss Munchy has an uncanny knack for reading people. She can pounce on a moment of weakness like no other child I know. She is selectively deaf to her name, and she’s learned that if she answers the question “Do you understand?” with a poker face, she might very well get away with doing what she’s been told not to do—because after all, the grownups will never know for sure that she’s actually disobeying. She knows they’ll question whether she actually gets it.
She knows how to work the system, my girl, and she’d be on a fast track toward “intolerable” if not for the fact that she’s so stinking cute.
With small children, it’s hard to figure out how much of what transpires is actually processing in their mysterious little brains. Sometimes you can see the processing going on, but you never know what conclusions they’re going to draw. This is one of the (many) reasons I’m a baby mommy and an older child mommy, but not so much a toddler mommy. I find it incredibly intimidating to guide them through this critical developmental time when I’m essentially walking blind in the dark. And with Julianna, this stage—like all others—is a long one.
Even so, I’ll take her as she is. The more time passes, the more I realize how perfectly suited this particular little girl is to be my daughter. Independent-minded, enjoying time alone, a budding bookworm who doesn’t demand that I have tea parties with her (shudder), a dusky laugh and the goofy sense of humor that makes bedtime so much fun (even if brushing teeth is not)…God gives each of us the children we need, but He outdid Himself with this one.
She’s really IS stinkin’ cute! I love it!
With my niece (Autism), I know it’s difficult for ME (personally) to figure out when she’s just trying to get away with something or whether she truly doesn’t “get it” that she’s behaving in an ill manner. However, her mom and dad seem to be able to pick up on it much better. Probably that whole, “you know your kid” thing. 🙂
REgardless, lots of times, she makes it up with some very sweet and cute gesture.
I had a student in my children’s choir, who was born with Down Syndrome. It was a small town, small parish and her mom was a teacher at the school. This little girl was basically EVERYBODY’S child and drew the hearts and attention of everyone around her. My “thing” with the choir was music coupons- coupon for everything- being on time, sitting tall, singing on pitch, you name it- then once a month coupons were redeemable at the Treasure Chest filled with music related prizes. The music room was just inside the main door, so the parents simply dropped their children off carpool style; rarely did I actually speak to them. Well, sweet Rachel was consistently 5-10 minutes late, but every week she still believed she should have a coupon. At first I resisted, trying to be fair, and trying to explain that she only gets a coupon if she was on time. Her pat answer, week after week, was “my momma said”. Well, I wasn’t about to argue momma. Or Rachel. It wasn’t just the words, it was the way she said it. I gave her the stinkin coupons. For months on end! I figured she didn’t “get it”. The other kids must have figured the same, because they didn’t complain. Sadly, Rachel passed away towards the end of the school year. All this time I had listened to her “my momma said” and relented on the coupons. At her funeral vigil, my eyes were opened. Her daddy got up and began talking about how Rachel was a master at “working the system”. Her cuteness got her out of trouble and got her just what she wanted time and again. He began to tell story after story of how she got away with everything under the sun by using ” my momma said”. She even managed to get total strangers to give her chocolate milk from the dairy section of the grocery store, with her “my momma said.” I mean, who’s gonna argue THAT? That night was when I finally realized that lil bugger had been workin me the whole time!! Some of the choir kids were there and they were all laughing at how THEY’D been “had” too. Now, whenever I think of this, I still laugh, but not without tears in my eyes. She was a very special little girl who touched my life (and many others) in a very special way.
Wow, now I know to be on my guard!
Lately we’ve been warming up on Sunday mornings in the parish hall, because rehearsal spaces have been thrown out of whack by a major reorganization of the school. This also happens to be where the parish holds Coffee & Donuts. Julianna’s been nonchalantly wandering away from parents & choir baby playmates and helping herself to doughnuts. And this weekend I saw–too-late–that she had gone up and butted right in the front of the line to grab a doughnut hole, AND THEY ALL LET HER DO IT. We’ve been trying to nip this behavior in the bud. Everybody says, “Oh, it’s okay!” but we know it wouldn’t be okay for any other kid, and we really want Julianna to be able to function properly in society. But man, it’s harder to teach her than her brothers!
Adorable pictures!
First- she is seriously a.dor.a.ble!
Second, when I taught kids with hearing loss, I always smiled a little when they tried to ‘work me’ I’d even tell them ‘you use that trick on other people not me,’ while I giggled at them. Why the smiles and giggles? Because sadly, this world is a cruel place to all of us, and we all sometimes need to get noticed. So, if they could learn to find ways to get noticed, even if it meant ‘working me’ occassionally, then I saw it as a good self-advocacy skill.
Do kiddos with special needs need to get along like other kids? Yes, as much as possible – and sometimes that means being cute to get out of jams 🙂
Third – I am still gushing over the cuteness!!! 🙂
🙂 Warming a mommy’s heart. 🙂
She’s beautiful! Absolutely gorgeous!
And wow…I am NOT an anomaly! I also am not fond of girls’ licensed clothes. ICK. I’ll tolerate them on pj’s but I don’t like them on clothes they wear day to day. Like you, I don’d boys’ superheroes. HEE HEE
Hi, my name is Helena S.
I just wanted to inform you that I have downloaded (actually pinned) your child’s picture to be able to make a 1:12 scale miniature doll that looks alike once my clay skills get better. I just thought that cuteness was worth the effort. Also would love to be inclusive and raise awarness if or when I become a good miniature artist.
Im downloading my inspirational people pictures from google, that’s how I came across it.
If you’d rather me to delete it or have any concerns, please email me.
Kind regards,
Helena S.
As long as you promise to keep me informed on the process! 🙂