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:

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“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.

The pros of repeating first grade

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Julianna and I on a mommy-daughter date to Disney On Ice this weekend

Julianna and I on a mommy-daughter date to Disney On Ice this weekend

At the end of last school year, Christian suggested to me that perhaps we should have Julianna repeat kindergarten. I told him no way; why would we do that? She’s basically with all her peers. He shrugged and said, “Okay,” and that was the end of that.

By the time I attended the Down Syndrome Education International conference a few weeks ago, the picture looked pretty different. The first time Julianna came home with a page of homework crossed out, I told Christian, “That’s it, they’ve started modifying her homework.” He disagreed. He thought it was just a mistake in the copies and it was probably crossed out on everyone’s.

When it happened again the next week I was certain I was right. The weekly reports that go out to all the parents talked about math sentences, and the homework that involved addition was excruciating for us. A week or two more and the Xd out pages disappeared. The weekly reports started including counting by fives–something Julianna didn’t have in her homework at all. I had a moment of mourning as I recognized the beginning of the split between my daughter’s capabilities and that of her peers. Then the worry started.

Because really, if she can’t even keep up in the first half of first grade, then that day when she’s going to need more help than can be given in an inclusive classroom is nearer than I’d like.

The day of the education conference, one of the presenters talked at length about the complex dance between expectation and ability, and how we keep our children artificially young. As an illustration, she talked about her daughter’s lack of academic prowess, and added that her daughter learned more math in the first year or two she lived on her own than she did in all the years of education that preceded it.

At lunchtime, I fell into conversation with a woman who was attending the conference with her daughter’s sped teacher. Her story sounded virtually identical to Julianna’s, and her daughter was repeating first grade because of the math issues.

The more I think about it, the more I like the idea. Kids with special needs are allowed to attend public school until age 21. Why be in a rush to get her to high school graduation? She can’t keep up in P.E., she can’t keep up in math, and in both cases it’s because she doesn’t have the foundational concepts in place. She’ll get them eventually (probably), but not at the same age as her peers. Why have her continually frustrated? Give her brain a chance to make the neurological connections. Once she “gets” the foundational concepts, she’ll at least have a fighting chance of staying close to grade level–not forever, but for a while. Close enough, that is, to allow her to remain in the classroom for an extra year or two. That is our overarching goal: to see Julianna’s education carried out with her typically-developing peers for as long as possible before the walls go up for good.

So I brought up the subject last week at parent-teacher conferences, and the conversation is underway. Now I just have to get over my fear that it’ll be emotionally rough for her to see her peers move on if she stays put. To have to make a new set of friends. (Because Julianna has such a hard time making friends, you know. 😉 )

A Snapshot of a First Grader With Down Syndrome

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Julianna head shotIt’s been a month of Tuesdays with Julianna in honor of Down Syndrome Awareness Month, and I thought I would wrap up by giving you a snapshot of her academic skills two months into the first grade. Bear in mind this is only a snapshot of one child, a single individual; I know of children her age with the same diagnosis who are far ahead of her, and those who are behind, and others still who are ahead in some ways and behind in others. So this should not be considered anything more than a single example. Like typically-developing children, kids with Down syndrome have a wide spectrum of abilities and achievements. But for what it’s worth:

Speech: At 6 3/4, Julianna is now trying to communicate a lot by words. She’s developing coping techniques for the many times we can’t understand her–signs as backup, or pointing or showing us what she’s talking about, when it’s possible to do so.

Reading: This girl loves to read, and she’s good at it. The schools use a numbering system to indicate level. A couple of weeks ago her teacher told me her reading level was 4, and grade level was 6. Shortly after, one of Christian’s piano students’  parents, a speech therapist, read through a book with her during her daughter’s lesson. She said Julianna is actually reading at an 8 or a 10, but that fluency and comprehension are factored into the package and might bring her down. And comprehension & fluency definitely lag behind her ability to recognize words. That’s what her teachers are wanting us to work on.

Homework with DaddyWriting/spelling: Julianna’s weakest area in the language category. She can write the letters & numbers, but they are huge, misshapen, and don’t follow one after another, so it’s nearly illegible. Christian has been really good about drilling her on spelling words repeatedly over the course of the week, and she’ll know them cold, but still miss two out of six on the test, which we can only attribute to the writing hurdle.

Math: She recognizes numbers and can count one to one, but you can tell she doesn’t get the conceptualization required to do addition and subtraction. A few weeks ago her homework made me want to cry because it was addition problems, and I had to write out all the domino shapes for each number, and we’d have to count: 1-2-3-4-5, 1-2-3, now let’s put them together, 1-2-3-4-5-6-7-8. Now they’re telling us to work with her on adding one to different numbers, just to get her to understand the concept.

Even so, she is still basically working at grade level. We’re trying to keep it that way as long as possible. Of course it would help if Michael Mayhem would quit ripping her glasses off her face and snapping the earpiece in two. Grrr. But that’s another post.

So there you go: a snapshot of one first grader with Trisomy 21. Any questions you’d like me to answer?

Julianna (a 7QT post)

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Picnic, playground, Pinnacles 097___1___

The decision was made at the end of last week: Julianna will remain in public schools. I would like to say we made it, but the truth is that the Catholic school decided they simply couldn’t serve her. I was relieved, because for quite some time I’ve been moving toward the conclusion that she is where she should be, and I was dreading having to make the decision ourselves. Christian, however, was not so sanguine.

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As much as anything I think our disappointment stems from the lack that the Catholic school kids suffer by not having her in their midst. Ugh, I sound like one of those insufferable moms who think their kid’s very existence enriches the universe around them, right? Well, I can only plead guilty, but I do have a reason.

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I’ve said before how not-diverse my childhood was, and how difficult that made it for me to translate lessons of equality before God into action. My mom says I have a tendency toward “scrupulosity.” In this case, that means I’ve spent my entire life worrying about whether I’m treating people the same regardless of skin color–or, I discovered later, disability. Knowing something in theory is not the same as having the chance to put it into practice when the lessons are being formed. For this reason I say that kids need to be around my daughter at least as much as she needs to be around them. Other kids need that interaction.

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Our local Catholic school isn’t quite as homogenous as the one I grew up in, but it’s close enough. And last fall, we had a rather disheartening experience at the cub scout family campout, which is entirely Catholic kids. Exhibit A: during Mass out on the lawn, Julianna was reciting prayers loudly and not clearly, as she always does. She got several of those “looks” from the kids. You know, the “you are so weird, what is wrong with you?” looks. Afterward, there were a few little girls running around hand in hand. They were so cute, and Julianna went running over to join them. They, too, gave her The Look and gave her the cold shoulder.

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Understand that nothing like that has ever happened around the public school kids. The only explanation that makes any sense to me is exposure to diversity, or lack thereof.

Take a bow, girly girl

Take a bow, girly girl

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I read something recently that said that although people with Down syndrome have a low intelligence quotient (Julianna’s IQ was measured at 60), they have an emotional quotient that’s much, much higher. That rings true; Julianna is enormously empathetic, sensitive to mood, and seems to be able to pick out the person in the room who most needs loving. As a society we are so focused on intelligence as the primary value, we’ve failed to recognize the contribution that a high emotional quotient has to offer.

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Although Julianna is reading at “level 2.” Level 4 is considered end of kindergarten. Not too shabby, methinks.

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Yesterday her school had a Mothers Tea. It was a concert followed by cookies and fruit punch. The kids were “warming up” with the music teacher when I arrived and sat down. I was just beyond the music teacher, and Julianna was so fixed on her, she didn’t see me at first. But when she did…well, those of you who have met Julianna know how she reacts to delight. Christian says her entire face expands to make room for the size of that smile. “BAH-EE!” she screamed, drowning out the other sixty kindergarteners. So stinking cute. They were doing songs about mothers, and every time they said the word “mom” during the performance, she pointed with her entire arm at me.

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I will not, however, pretend that she’s an angel. She is not. There is way too much brother-torment and button-pushing and deliberate obtuseness in my girl to justify that label. But I’m shredding the idea of seven quick takes now, and I need to mow the lawn. 🙂 Have a great weekend!

7 quick takes sm1 7 Quick Takes Friday (vol. 216)

May Fest

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Spring Festival Photo BoothWhen I was a kid, my little parochial school–200 students, grades 1-8–had its major fundraiser the first Friday in May. The school cafeteria/gym became the venue for a pork chop meal, which I think everyone in the parish attended, whether they had a kid in the school or not. In the corner was a country store selling baked goods. My mother always sent four loaves of bread. Each classroom was converted into a booth: cake walk, wood burning, engraving, lollipop tree. The end of the building, blocking the main entrance, was a white elephant.

It was a community event, and utterly magical. We looked forward to it every year. My parents have a set of six huge globe goblets that my sisters and I won piecemeal over the course of years by throwing ping pong balls into them. (As a parent, I can now shake my head and imagine their reaction: “Oh, great, just what I wanted. More of those tacky goblets.”)

I thought of this about an hour into Julianna’s school spring festival on Friday night. It was supposed to be outside, but–big surprise, this ridiculous weather year–it was too cold and rainy. In keeping with modern America’s abysmal eating habits, the meal was hot dog, chips and a cookie instead of the pork chop, green beans & homemade desserts of my youth. There wasn’t a country store or a white elephant–but the classrooms were set up for bean bag toss, lollipop tree, and the like. Including a photo booth, where I volunteered for half an hour.

It was a bit chaotic. Michael was getting tired, and our whole family (except Christian) has been fighting the sore throat/cough bug. Michael began hurling himself to the floor and rolling around long before we ran out of tickets. Until he discovered a water fountain with a stool in front of it, that is. After that, he was in heaven.

It was such a fun evening. Crazy, yes, because the halls were crowded and it was tough to keep track of the kids. My memories of Mayfest involve us being cut loose, but of course we were older.

What struck me about the juxtaposition of memory on present is the rarity of events like these nowadays. Even my parochial school has abandoned Mayfest for the more profitable “auction” format. And I don’t like that format. I feel locked out of auction events, because we will never, ever be in the market for large ticket items, especially not at auction prices. And although there is a community aspect to an auction evening, it’s not the same. Auctions are adults only. Now, don’t misunderstand: I can certainly sympathize with the desire to spend time with other adults. But at the same time, it feels wrong to me somehow to remove the kids from the quotient. After all, we’re fundraising for the kids’ school. Why not make them part of it? Let them be invested? Make fundraising an event that not only raises money and builds community, but also gives families the chance to have fun together?

Maybe it’s not an either/or situation. The auctions certainly serve their function; they raise a ton of money. But wouldn’t it be wonderful to have those family events that bind communities together, too?

I guess the obstacle is that a spring festival requires a higher commitment level from the community. The need for volunteers is greater, the need for donations is greater; people need to take time to bake goods and make crafts and prepare homemade desserts and spend shifts in the kitchen and the game booths. You have to go through your closets looking for white elephants to donate. All the way around, a festival is a bigger commitment from the non-committee members, and the larger the school, the more unwieldy the practicalities. And the reality of urban life in the modern world is that it’s hard to get people to volunteer to the needed level. I’m as guilty as anyone else.

So maybe my idealized version of a school fundraiser is doomed to failure. But when I remember the festivals of my childhood, and when I see my kids enjoying the one at Julianna’s school, it makes me sad.