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No Day But Today

posted Friday April 9th, 2010

Sophie has a new habit. She likes to ask me what’s next.

It’s better than some of her past “tics” — telling strangers “You’re mean!” or screaming “Buy it!” in stores (my dear friend Robrt’s favorite) — but frankly, it’s wearing. Here’s how it goes:

“Mommy, what day is it?” Sophie will ask — before sun up, if allowed. The days are getting longer, so I’m sleeping less.

“It’s Thursday.”

“What’s happening today?”

“You have physical therapy with Dorcas.”

“What’s after that?”

“I’ll drop you off at school.”

“What’s after that?”

“Courtney will pick you up.”

“What’s after that?”

“You have a play date with Sarah.”

“What’s after that?”

“Daddy comes home.”

“What’s after that?”

“You’ll eat dinner.”

“What’s after that?”

“You’ll do your homework.”

“What’s after that?”

“I will come home and tuck you in.”

“What’s after that?”

“You’ll go to sleep.”

“What’s after that?”

Usually, on principle — and due to sheer exhaustion — I’ll cut her off after we’ve gone through an entire day. Let her, and Sophie will ask you “What’s after that” for a week’s worth of days. It makes me a little sad, this constant desire to know what’s next, this lack of ability to live in the moment. I know it’s just a developmental phase, but it’s made me focus on my own habit of thinking about what’s next instead of reveling in the here and now.

I even bought myself a bracelet at one of my favorite boutiques, Frances, that says, “Live in the present.” (It also makes me chuckle as it serves as a reminder that I really should be less materialistic — living should be enjoyed without presents, if you know what I mean.)

This morning I was forced out of the moment and into the future, as I endured Sophie’s annual IEP (Individualized Education Program) meeting. A group of us sat around a table at the school and went over her goals for the next year.

The adaptive physical education teacher wants Sophie to learn how to hop on one foot. The occupational therapist is working on the number 7 and the lowercase letter b. The speech therapist’s goal is for Sophie to use a sentence with an adjective correctly, 8 times out of 10. (This is just a small fraction of what was discussed, as you might imagine.)

We talked about how well Sophie’s reading, and how (frankly) poorly she’s doing at math. Apparently she brings reading books with her to math class, which was news to me; there will be a new goal in next year’s IEP, instructing her to leave the books behind and focus on the numbers. (I feel Sophie’s pain. The administrators, teachers and therapists never believe me when I try to tell them that Sophie’s challenge is not just Down syndrome — it’s ME. Yeah, she gets the reading from me, but the math, too. And the hopping.)

I think I sucked them dry for every minute of extra help I can get for Sophie — with as much of it as possible happening in the classroom — and was feeling fairly pleased (though wary as always, I hadn’t yet gotten the chance to demand that lunch room help every day actually be written into the IEP, something the principal hasn’t wanted to do in the past, since she’ll be legally bound to provide it) when the special ed teacher presented one more list of accomodations for me to approve.

Test-taking accomodations. I always figured Sophie wouldn’t have to take the statewide standardized tests — including the dreaded AIMS test — that Annabelle takes. She didn’t in kindergarten, anyway. Turns out, kindergarten was an exception. All kids must take standardized tests, and their scores all count.

Suddenly, a light bulb went off over my head. Now I get it. This is why public schools don’t want special needs kids. (Or English Language Learners either, for that matter. They’re included in this f-ed up situation, too.)

And in Arizona, thanks to an incompetent (and that’s a kind description) legislature and a superintendent of public instruction who spends more time, I hear, arranging jobs for his girlfriend(s) with the state than actually paying attention to — or caring about — what’s best for kids, it’s ALL ABOUT THE TEST.

“Oh, I get it now,” I said to the principal. “Well, look on the bright side. At least my other kid sends your averages up, not down.”

She quickly corrected me. She doesn’t care a bit about Sophie bringing down her average, the principal insisted. She simply feels sorry for kids like Sophie who are forced to take these tests.

Uh huh.

In any case, Sophie will be taking them. Yeah, she’ll get all kinds of “accomodations” — a quiet place, extra time, someone to explain things. But still. It’s hardly a level playing field.

The bell rang and the teacher left to lead the Pledge of Allegiance. The rest of us were quiet around the table. The adaptive PE teacher spoke up.

“Hey, look on the bright side,” she said. “You’ll really enjoy reading the test results when they come out and seeing how much better Sophie does than some of the typical kids.”

Is that really what will happen? We’ll have to wait and see. But I have to admit, that made my day.

For today, any way.

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Tags: Filed under: Down syndrome, public school, therapy, Uncategorized by Amysilverman

8 Responses to “No Day But Today”

  1. Does your school use touchpoint math? Our school does and it works well for Kayli.
    I wonder if these questions are a good thing- she is locating her time and schedule, orienting herself. I know that we kind of focus on Kayli’s daily schedule and go through it with HER , I wonder if she’s sick of us doing it LOL! Kayli lives mainly in the moment and has a poor sense of time going by or future so now that she is learning to tell time and concepts before and after it is interesting to see ow she puts it all together with a focus on concrete things (Rachel Ray, bedtime, school etc.).
    I think there certainly is some truth in the light bulb concept unfortunately…..Sigh.
    Sounds like a meaty IEP meeting!

  2. funny, we discussed exactly that in sophie’s IEP! made me wonder why touch math (as they were calling it) hadn’t come up as a topic before. sigh. but good to know it’s worked for you guys.

  3. I drink a lot of wine the night of the IEP. What else can I say? I used to fight for more services, now we have too many. The PT wanted to hang out during zoe’s recess. No! 12 people sitting
    around a table detailing more weakness than strength. Ugh. Touchpoint math has rocked for us. I also have insisted on co-servicing in the classes. Ie, speech therapist works on end sounds with zoe using her site words or working on reading. OT visits in art or center time or computer lab. Less pull out. I fought for some great technology aids, computer programs with adaptions and Zoe got a laptop she uses in the classroom now. Hope you had a cocktail that night! Hope you are well. I miss mww

  4. Oh Amy. This post made me laugh and cry at the same time.

    And “live in the moment.” Wow. That’s some advice I need to take (and practice!) too, especially for the next year (see my email to you….) So true.

    And I hear you on the tics. Leo’s current is “what’s that sound?” And since I rarely guess accurately which sound he’s referring to, there is a long list.

  5. Suzanne — I totally relate (and not only on the wine — I drank half a bottle Friday night!). Sometimes I feel like we have way too much therapy. I insist on as much “push in” as possible, but many of the therapists still prefer pulling out. Sigh. It’s a continual work in progress — hardly a once-a-year endeavor, huh?!

  6. Maybe knowing the scaffolding of the day is what allows Sophie to enjoy the present moment.

    Two years ago, the New Yorker had an article about people who are so cognitively impaired (usually due to head injuries) that they can’t remember more than a few moments at a time. Instead of joyful presentism, these people lived in disoriented near-panic. The one time they felt comfortable was when the people who had been musicians got to listen to classical music. The music helped orient them, apparently, it gave them a pattern, it helped them know where they were in time.

    It helped me realize that we all need to know what pattern we’re dancing in. That may be true for Sophie, and maybe even for the IEP. Or maybe not.

    Anyway, I study history AND I believe in relishing the present moment — and I want to think that is not as contradictory as it seems.

  7. [...] IEP meeting was last week, and we’re still in the throes of finalizing/reviewing/sign-seal-and-delivering, but things [...]

  8. Ok Sorry I am writing comments on old posts but I’m catching up — and I second the whole Touch Math thing, kids with DS are typically really good visual learners (there’s a program in Orange County, Ca called The Learning Program, they’ve corralled a lot of the ‘best thinking’ on how kids with DS best learn, and it goes without saying that it is hard to generalize but that seems to be one of the big common threads – visual learners). That has been huge for Cooper, as have flash cards (again, good visual memory). As for the IEP, I sweat buckets under my clothes and always feel like a truck hit me afterwards, even though for the most part they go just fine. And I’m sorry about the whole standardized testing thing — we can opt out in California, so we have — I think our kids get so much extra evaluation that they deserve to skip it! (but I think that teacher is right, Sophie will suprise you and likely a few others, too!)

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