On Julianna, at the end of Grade 2

Every so often, I like to share some of Julianna’s school work and progress. I need to be clear: this is not a total picture of Down syndrome. It’s not even a total picture of “what a person with Down syndrome can do in the second grade.” There’s a vast range of ability among people with Trisomy 21, just as there is in the typically-developing population, and it’s quite uneven. Julianna could read before she could talk, where we know of other kids her age who could talk by three but still struggle to decipher words on a page.

Still, with all those caveats, I like to share these because it’s at least a snapshot of one child’s struggles and “adorability.” At the end of second grade, she is nine years old, having repeated first grade, and is included in the regular classroom about 70-75% of the school day. She shares a para with her bestie, and she loves school so much that one of her opinion papers this year was on the topic “why we should have school on the weekends.” Even now, in the last week of the school year, she greets the bus every single morning with a warbling giggle as if it’s the first day of school.

And here are some examples of her recent schoolwork (spelling corrected):

Opinion papers

“I think the pigeon should not drive the bus. The first reason is the bus driver (one almost completely unintelligible line, I have no idea what that third from the bottom says except the last word is “dose”, to wit:)  does not have a license. The third reason is” (I guess class ended).

You’ll notice that she struggles with capitalization, punctuation, and spacing between words in addition to comprehensible letters and spelling. The spacing has been their focus at school lately. This is some of her best work, I think. Certainly the homework writing I supervise (read that, sit beside her and watch every pencil stroke) at home is nowhere near this legible.

My personal favorite:

“I think the ant should not be squished. The first reason is he does not want to be squished. The second reason is the ant has a family. The third reason is” (again, interrupted).

(Now come on, tell me every one of you isn’t going “Awwwwwwww!” right about now!)

That gem might be hard to top. But we’ll try. Because after all, she was asked to say what her best “special” is, and she couldn’t decide from one day to the next:

“I think P.E. is the best special. The first reason is because Coach has balloons. The second reason is because we have a parachute. The third reason is because we have a basketball. That is why I think P.E. is the best special.”

Except, au contraire, the next day she had THIS to say:

“I think media is the best special. The first reason is because I like to go on ST Math. The second reason is because (mumble mumble) is fun. The third reason is because I get to wear headphones. That is why I think media is the best special.”

Finally, as an illustration: this is the STAR reading graph we received on Friday. I don’t really understand all these assessments; the point is to see the trend line, which is computer generated from the scattershot of good and not-so-good assessments.

You’ll see that sometimes she’ll perform exceptionally well, and then she’ll show an apparent backslide, only to shoot upward again. This has been very typical for Julianna–extreme inconsistency. It happened with her counting, too; they could not get her over a hump where she could consistently count up to a number. One day, she’d count all the way to sixty; the next day she’d skip a couple numbers near the bottom of the chart (10, 11, 12, 16, 17). This went on for more than a year. Reading comprehension is doing the same thing to her. She loves to decode words, but she doesn’t always understand what she’s reading–or, more likely, she doesn’t know how to tell you about it. Hence these numbers, when her teachers say starting grade 3 they want to see kids around 300.

Homework is an extremely intense experience for Julianna. She can’t do it by herself. Not, I won’t let her…she can’t. I have tried to walk away and chop some onions for dinner while she writes down an answer we came up with; when I come back, I find she’s put it on the wrong problem, or she’s spaced out on what she was supposed to write and has written something random and unintelligible.

So far we’re choosing to walk her, step by step, through the same math problems her classmates are doing, even though we know she doesn’t understand what she’s doing, because she still hasn’t made the connection that numbers are a symbol of a reality. It’s entirely an academic exercise to her. This is a pretty common phenomenon among people with DS–at the education conference I attended a couple years ago, the presenter was asked what the solution was, and she said, “Get the school to let them use a calculator as early as possible.” This same woman said her daughter finally learned to count money when, as an adult, she was motivated by a desire to ride the bus to see her new boyfriend. So there you go.

I like to share these snapshots because Down syndrome is viewed with a big air of mystery and vague generalities. What precisely does a mental disability mean for a child’s schooling? This gives you a peek at an answer to that question, at least for one specific individual.

Questions? I’m all ears.