Testing (or: when a morale-booster ends up being demoralizing)

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This past week, we got the results of Julianna’s “re-eval.”

Now, for those of you who are not immersed in the world of special education, part of the process is that every three years a child must be re-evaluated to make sure they still qualify for special ed. There’s a whole battery of tests, and I guess the team has some leeway in which ones they think they need and will actually be useful.

Julianna just went through this process, and I’m blogging about it because this is the first time I ever understood the antipathy among special needs parents to the whole concept of IQ testing. (Check out this link–the first one to come up–to realize how people thought of those with low IQs when this first became a thing.)

Truthfully, I was kind of curious. Julianna was tested when she went into kindergarten, and at that time we were told that in the first couple years of elementary school the number can shift. I don’t remember exactly what her first IQ was—I think it was middle/high 60s.

Three years later, they didn’t retest her IQ. I was slightly unhappy about that, because I was sure it would go up and let’s be honest, I wanted that morale booster.

Well, this time they did the IQ testing. In fact, they led with those results when we met last week.

40s, people. She tested in the 40s.

They were quick to say they didn’t think this was representative of her actual intelligence. They had to pull her from class to take the tests—all of them. And she was not happy about that. Not happy at all. She loves school. There’s not one single thing she doesn’t like about school. So the entire time she was being tested, she was grouchy and focused on getting back to class, where she belonged.

But they kept going around the table, and every one of those global numbers came out in the 40s. It was all the same caveats:

“She showed she understood the question, but the instructions said to use the cue word, and she didn’t use it. She used other words instead. So she got counted off for that.”

Or:

“Some of these areas she scored really high on—in the 70s or 80s—but the comprehension is her problem.”

Or:

“She was really focused more on what we were doing after the test was done rather than the questions.”

You get the idea. And I found myself stopping the meeting to say, “Hang on. If these tests are not indicative of what she’s actually capable of, why are we doing them?”

They hastened to add that they chose some more…descriptive (I think that’s the word they used) tests that they felt would showcase her strengths, to supplement the standardized tests. So that’s good.

But for me, this has put the whole question of standardized testing in a new light, which is why I’m sharing. Too many of us just take many of these things for granted.

I totally get that standardized tests are standardized for a reason. Everybody gets the same instructions. Nobody gets clarifications. Nobody gets alternative instructions. That’s the only scientific way to say everybody got exactly the same opportunity. My whole life, people have complained, “Standardized tests don’t test knowledge. They test how well you take tests.” I always thought that was hogwash, but then, I’m a darned good test taker.

Now, I understand.

And here’s the thing: for most of us, those standardized tests are really not that important. But Julianna’s going into the 5th grade. In the next twelve months, the entire shape of her middle school experience will be decided. The whole purpose of this battery of tests was to help direct that process.

So now what? Will she be walled off in a self-contained classroom where her focus will be “essential skills”, and no longer be able to interact with her typically-developing peers for any academic work whatsoever? How much inclusion is possible? How much can we fight for?

It would be very easy to use that 40-something IQ and related test results, and put her out of sight-out of mind for the rest of her educational experience. And she would be poorer for that. Even more importantly, her peers would be poorer for it.

Now, for the first time, I understand why all those parents said, “Don’t ever, ever, ever, EVER let them do an IQ test on your kid!”

I said to our IEP team: “We have always had a really good experience, we’ve never felt like the relationship with the school was combative, we’ve always felt like we were on the same page. I need you guys to stand with us as we go forward in this process. The reality is, Julianna is never going to be a high academic achiever. Sticking her behind a wall isn’t going to change that. She won’t accomplish any more there than she would outside it. What she’s good at is people. She needs to be around people, and they need to be around her. I need you guys to help us discern what is the appropriate level of inclusion, and I need you guys to advocate for us.”

So that’s where we are. We have a true IEP meeting in a few weeks. I’ll update after that.

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Fun With IEPs

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Step Up Walk

This weekend at the Step Up For Down Syndrome walk in Kansas City, with a friend we don’t see too often because of distance (and busy-ness!)

Fun fact: I spent 2 1/2 years as a music ed major before deciding all I really wanted to do was play my flute, and I universally hated every one of my education classes. The class that broke me and caused me to switch? Special Education For Non-Special Educators.

It took me until Julianna was in the 2nd grade to realize that class, as much as I hated it, had given me an exceptional orientation to what I was now going through—that I didn’t have stress and confusion on the process, because I’d studied it in the abstract.

The irony is not lost on me.

 

 

paperwork

The portion of Julianna’s educational paperwork we have actually kept over the years. This is probably about half of it. We print on the back sides of a lot of the rest.

We had Julianna’s IEP meeting on Friday. The process begins with a summary of “present level,” which comes home in advance. I’ll be honest: usually I don’t really read it very carefully. This time, however, we were coming in with some strong opinions and so I took the time to really process those four pages of dense “special-ed-ese.” But I couldn’t help laughing at this paragraph:

julianna474_Page_1

Ah yes, my daughter is 4 for 4 when it’s about food. That’s about right. Chocolate, vanilla, and rainbow. Furniture. Yup.

And this one:

julianna474_Page_3

“an answer that is unrelated to the passage and of high interest to her, for example, Star Spangled Banner, swimming, and choir!” Oh yes, these people DEFINITELY know my daughter!

The great and ever-ambiguous “They” say you should never go to an IEP meeting alone, that you should always have someone in your corner, someone outside the family who knows you and what you want for your child. I’ve never done that, because I’ve always felt like we’re all on the same team. This time, though, Christian and I set aside the time to attend together, which isn’t normally the case. I sent an email ahead saying, “Listen, we have a lot to talk about, so can we just skim over that part where you tell me my daughter is kind and loving and enthusiastic and gets along with everyone? 🙂 ”

There was a person there this year from district administration, which was new, but I decided it probably wasn’t worth asking why when we were already pressed for time. There’s the part of the meeting where they address parents’ concerns, and I was like, “Oh, hang on, you don’t have nearly all our concerns yet.” 🙂 We had to talk about the looming onset of puberty. The fact that her STAR reading scores were completely flat the entire last school year, and that because it wasn’t in the plan, they weren’t allowed to spend time working on reading comprehension during summer school. The fact that she’s getting to the age where she notices her brothers have play dates and friends over, and she doesn’t get invited to parties or for play dates even though the kids are really good with her at school and everybody loves her, and the fact that she’s virtually incapable of having a truly interactive conversation with her peers that would facilitate those friendships.

It was a longer meeting than usual, and all our history as parents rode piggyback on the moment when, late in the meeting, Julianna’s sped coordinator said, “Now, I don’t want you to freak out when you see the minutes…” I had to chuckle: they knew us well, with our adamant and repeated insistence over the years that she be included in the regular classroom AS MUCH AS POSSIBLE for AS LONG AS POSSIBLE. They removed some physical therapy minutes for the coming year, but the addition of a whole lot of reading comprehension minutes means that her time in the regular classroom is dropping from over 70% to just about 60%.

And when the meeting ended—after an hour and a half—and the teachers hurried to get back to their neglected classes, the district representative finally explained her presence. She’s the one in charge of determining placement for kids when they enter middle school. As in, which school and what kind of classroom (i.e. self-contained).

Friday was the first time we had to face the reality not only that she might be less included in the near future, but that in the middle-future she might not be able to be included at all.

It’s a bittersweet moment, but we knew it couldn’t last forever. Her classmates are doing multiplication, and she’s still doing subtraction under 10 (and not well). Her classmates can answer questions like, “Why do you think Character A did Action B?” while she’s still struggling to answer, “WHAT did Character A do?” The gap is widening. When kids start splitting into advanced math and regular math and remedial math, how can you expect inclusion for your kid who’s still doing primary math?

It’s beyond my comprehension, this whole issue of how her mind works. I picked her up early last week in order to facilitate the afternoon madness, and so she was with me for pickup at the Catholic school. She’s only been through that pickup line a handful of times, because she gets out later than they do so she only comes if she’s sick or they’re off school. And yet she kept insisting things like, “THAT is where Nicholas is,” and “I___, you are coming with US!” (Insistently enough, I might add, that not only I___ but his teachers asked me whether it was true, rather than going on the basis of what they know! Ha!) Everything she said was true…last year. It boggles my mind that her spatial sense is so strong when so many other things aren’t just difficult, but simply don’t exist.

Sleeping Beauties

Random funny picture of sleeping kids on the way home from the step-up walk yesterday. Yes, we’re missing one. He had Cub Scouts.

Well, I’m reaching epic proportions and I haven’t had breakfast yet, so I will leave off there for today and hope that this glimpse of special needs life is illuminating.

On Julianna, at the end of Grade 2

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J basketball

Julianna’s favorite toy these days. She loves to bounce and catch it with anyone who will play with her. And no, as a matter of fact, I can’t get her hair to stay in ANYTHING. Thanks for asking. 😉

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

pigeon

“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.

ant

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:

PE

“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:

Media

“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.

STAR report

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.

Julianna’s New Schoolyear

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I owe you an update. You might remember that when we first had Julianna’s kindergarten IEP meeting, back in January, the representative from her elementary school, who knew very little about her, recommended that she be in a self-contained classroom for 65% of the day. I was very upset about this on a number of levels–the most basic being: if the assumption is that kids with disabilities are going to be walled off, and they have to fight their way into the general population by proving they don’t really have a disability, then society is setting them up for remaining behind that wall their whole lives.

Christian and I set up an appointment with the school last spring. He took a day off so we wouldn’t be rushed, and we spent over an hour meeting with people at the school expressing our concerns. Julianna’s peers need to be around her at least as much as she needs to be around them, we stressed. And after all, we’re realistic about her academic future. There are a limited number of skills she needs to learn in order to function in the world: reading, writing, some basic math. And she has thirteen years to learn those skills. What she really needs is to learn how to interact with typically-developing peers–because those are the people she’s going to have to interact with as an adult. We want her schooling to prepare her to live in the community, not behind a wall.

The team was cautious in their response to us–cautious, though supportive in theory. I spent most of the summer thinking I was going to spend this school year skirting the fine line between advocate and pain in the school’s @$$. But about three weeks ago, the head of special ed at the school emailed us and said, “Hey, let’s do this IEP meeting now instead of in September.”

Really?

Wow!

So the day before school started, we had an IEP meeting in Julianna’s classroom at her new school, a meeting that included the principal and a representative from the district (I’m not sure if that second one is standard, but I’m pretty sure the principal’s presence is not). It was a good thing on many levels. Our ideas for goals have solidified in the past few months, for one, and this allowed us to formalize those goals. It also served to introduce us to the team, and best of all, the school was on board with a much greater level of inclusion. They reversed the proportions. Now, Julianna is spending the day in her regular classroom, and being pulled out for PT, OT, and speech therapy, plus adaptive PE and a little bit of extra instructional time. It boils down to this: Julianna’s in a regular ed classroom around 70% of the time.

I’m very pleased with the school so far. There are the quirks I don’t care for–like the chocolate Teddy grahams at breakfast that first day, and the fact that the bus didn’t even show up yesterday morning (but that’s a problem with the bus company, not the school)–but the feel of the school, and the vibes from the staff, have been 100% positive. Very supportive, very sweet, very professional and empathetic–in a nutshell, everything you could ask for in the people who are going to be working with your child. And I put this out in the e-universe as a word of hope to those who are viewing the transitions with trepidation.

Special Exposure Wednesday

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I realized something this week: It’s never going to end.

For the first two and a half years of her life, my sight was focused on getting Julianna mobile. Crawling, pulling up, and all the other steps along the path to walking. I knew that on the far side of walking lay teaching her to talk, an even more daunting task. After all, you can grab a leg, bend it, set it down, grab the other one—you can guide her through the motions of walking, and thus help her learn what it feels like. The lips and tongue are not so accessible.

But all this time, I’ve thought that once those two monumental tasks are out of the way, life will get easier.

Until a few nights ago, when I realized that beyond speech lies reading; beyond reading lies math. And beyond these two most basic life skills lie a host of things I haven’t yet foreseen that walking, talking, reading and counting are not going to prepare her for. At every step of the way, learning will follow the same, agonizingly slow pace, each new milestone just as dearly bought as the last with great effort from her teachers…and from us.

The knowledge overwhelms me. I whispered it to Christian, lying in the darkness two nights ago, and he went still for a moment. “Oh, I know,” he said. “I can’t think about it, or I’ll panic.”

I try to be positive about life with special needs. But this is definitely not one of the warm fuzzy moments. I know I have visitors today from 5 Minutes for Special Needs. Those of you who are farther along the path, what words of wisdom have you to offer?

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Linked to Wordful Wednesday and to