In bullet points, in no particular order:
Every time we introduce Julianna to a new teacher, be that classroom or for swim lessons, we have to begin with these words: “She likes to pretend she’s more helpless than she is. You have to be firm with her.”
The truth is, she manipulates without even realizing she’s doing it. She recognizes people’s (read that: authority figures’) weaknesses and exploits them without even knowing it. This is the reason for the above.
She doesn’t have friends. Everyone knows her and everyone likes her, and everybody’s excited to see her when we run into them in public–but nobody invites her over (or to birthday parties), and our attempts to reach out have been unsuccessful. I think this bothers us more than it bothers her, but I don’t know for how much longer that will be true.
She will go anywhere for any length of time if there’s a baby there.
Babies love her. Little kids are 50-50. Older kids are gentle with her. Adults absolutely adore her. But kids her own age…it takes a special kid to be willing to hang with her. This is not so much true at school, where they’re all very good with her, but again, she doesn’t get invited to anybody’s house.
Her reading assessments this year were completely flat. As in, she didn’t advance in reading level one single point. She can read the words out of a middle grade novel, but the assessment diagnostic recommends she be given preschool-level materials in order to comprehend. Basically this means she reads a lot of “5-minute stories” type of books.
It is hard work to talk to her. You have to be all in mentally, because she’s really hard to understand. This is probably one reason why she keeps telling you the same things over and over for years. Her pet topics are fire drills, horseback, the iPad, Sofia the First, Elsa blasting Anna’s heart, thunderstorms, and how long until the pool opens.
She doesn’t remember (or at least, she shows no evidence of remembering) anything you tell her about disruptions to the usual schedule. For example, we had the same conversation about how we canceled choir practice this week twice on Sunday, twice on Monday, and once today (and counting). She just keeps saying, “But we have choir practice on Wednesday!”
She’s incredibly spatially oriented. Whether it’s landmarks or what, I don’t know, but if we’re headed to one area of town she’ll list one or more other places we routinely (or used to routinely, or sometimes never went routinely at all) went that are in the same area.
She cannot stay angry. She’s actually, truly incapable of it.
She has my hair: so thick, it’s like two or three people’s hair on one head.
She does not have my hair: her hair is straight instead of curly, and exceptionally fine. It will.not.stay in ANY clip, rubber band, or headband I’ve ever tried. Hence:
I’ve said for years that toilet training happens when parents decide to prioritize it; it usually has little to nothing to do with “readiness,” except parental readiness. I’ve been thinking about this lately because Julianna can’t brush her hair, make her bed, brush her teeth, or do self-care by herself. Or more accurately, she can, but she will do a half-@$$ job at it. I’ve been recognizing that what I say about toilet training also applies in this situation: I have not decided it’s important enough to move to the top of my priority list.
She thinks she’s sooooo funny. (This is a trait that runs in the Basi family. In case you were curious.)
She will walk up to a retired thoroughbred racehorse and hug its neck, but if she sees a dog, no matter what size, she screams and runs away. And she gets extremely put out because the rest of the world does not have the memo that she does not like dogs. Or at least, because they’ve chosen to bring dogs into her general vicinity of the world, i.e. her town.
She can watch a movie once and recite almost the entire thing the next time.
She is a food scavenger. Whenever she clears the table, she tries to scrape up and eat the leftover broccoli or sauce left on the plates.
The flip side is that she’s also pretty easy to manipulate. “Can I have a kiss?” I will ask, and she will say, “NO!” But if I give her puppy dog eyes, she will giggle and say, “Oh, all right, I kiss you!”
And then there’s this, taken from within the choir by one of our sopranos last Sunday:
Kathleen M. Basi 
Question about the “friend” issue – does she associate with any other kids with DS? Or is she only in situations with typical kids her age? I do worry that my girl with DS (4.5 yrs now) will be lonely as she ages as there’s no one like her in her age group in town. We try to take her to GiGi’s playhouse to make sure she meets others like her, but it’s far away and life is busy. Right now, kids in her preschool like her (and one or two just adore her) but things are hard as my girl is pretty much non-verbal. (very adept at non verbal communication to get what she needs but not much of a companion for anyone who doesn’t know her closely.)
Maybe i’m selling my daughter short? Sometimes I think I’m doing everything wrong, for her. But we can only work with what we have. And she is loved by us. I hope that’s good enough.
We are working on scheduling with a couple other families who have daughters with DS in a similar age range. We all stay busy!
I will say we talked to another family whose daughter is older and they said it was in high school that their daughter really began to have friendships. we’d be more effective at getting her playmates if we didn’t have 3 other kids whose activities & social life we’re juggling…not to mention our own busyness!
On Thu, Jun 22, 2017 at 9:43 PM, Kathleen M. Basi wrote:
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