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:

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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.

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Being Clear-Eyed About My Special Needs Child, And My Responsibility To Her

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¾ of the way through Day 3 of iCanBike camp, the gym at the YMCA was starting to get less crowded as the more successful campers started heading outside with their volunteers to transition to independent riding. The speakers were playing “give ‘em hell” music like “Eye of the Tiger” and “How You Like Me Now?”, and at the far end, the head volunteer was trying to coax Miss Julianna, in her Frozen t-shirt and polka-dotted skort, off her roller bike and onto two wheels for the first time this week. She was not enthusiastic about the prospect.

And then the strains of The Heavy disappeared to be replaced by:

It worked. Soon enough, Julianna was circling the gym—slowly—on two wheels, the head volunteer holding onto the support pole on the back. Singing, of course. (Julianna, not the volunteer.) And about the time Julianna started sing-shouting, “The fears that once controlled me can’t get to me at all!”, she picked up some speed and the volunteer was able to let go and Julianna rode a bike about twenty feet without anyone holding onto her for the first time in her life.

Photo by ICanBike Fulton

As special needs parents, these are moments we cling to. Because the reality is that although these tend to be the moments we share, they are not the rule in our lives.

For every one of these, there are five or ten where I tell Julianna, “Put your clothes away,” and discover that she’s put her dirty underwear and socks back in the drawer with her clean clothes; then, when I scold her and tell her to put them in the laundry, she puts the entire contents of the drawer in the laundry. Or, in an excess of desire to be like her brothers, who are packing for vacation (and who are occupying every bit of my attention and then some), she pulls out every shirt she owns and dumps it on my bed. And when I say, “Julianna, we’ve got to make lunch right now. Put those back, and we’ll pack you after lunch,” she instead empties ALL of her drawers onto the floor of her room.

It’s hard for me to know how much she really doesn’t understand, and how much she is pretending not to. In the above examples, I wasn’t being very concrete. But often I do stop, look her in the eye, and speak very slowly: I need you to put your dirty clothes in the laundry…(pause)…and THEN…(pause)…fold your clean clothes and put them away. Sometimes I even have her repeat it back to me. And more times than not, the outcome is virtually the same.

It’s hard for me to accept that my 10 1/2 year old, who can read literally anything you put in front of her (well, okay, if you presented her with a foreign language or with medical jargon, you could stump her, but otherwise) really is incapable of carrying out a sequence of three simple instructions that she’s been doing every single day for years.

It’s also hard to accept that this experience gives credence to the stinging note on the final reading assessment of last school year–the one where it said she would be well served by handing her preschool books to read.

We’ve been very laissez-faire with Julianna…pretty much her whole life. Partly it’s philosophical, but mostly I think it’s because hey, we have three boys and it’s madness–madness, I tell you. This summer, for instance, I made a conscious decision to focus on getting Nicholas and Michael to swim lessons, because they can learn and learn quickly and be safe in the pool, and that’s one set of lessons we don’t have to mess with anymore! But Julianna isn’t served well by the same instruction–I mean, she does fine, but she’s so slow to progress, it’s a poor use of time and money–so right now she’s sitting out, and when fall ball is over we’ll spend the money on private swim lessons through the winter, when other things are not going on.

But I often feel my conscience pricked at the conviction that if I worked with her more consistently–on reading comprehension, for instance–that she would progress more, that she would be doing better. That I am underserving her mostly because I find the process frustrating. That I, in sum, am not being the best mother to her that I could. Or should.

And often I remind myself it doesn’t matter that much if it takes her 2-3 years longer to learn something than it would if I were more on top of things–because it’s not like we’re chasing a goal of success in trigonometry, statistics, and AP English.

But I really thought by the time she was 10, I could be reading Anne of Green Gables with her. I’ve been looking forward to that for a long time. And she’s just nowhere near that.

So when special needs parents share those moments that seem so small, so ordinary, it’s not just because we want people to understand that our kids can do the same things other kids can do, even if it’s harder or takes longer to get there. It’s also because we have this whole deep ocean of repeated failure that we don’t share. In part that is because we don’t want to be the whiners nobody listens to. But it’s also because we feel a huge, huge responsibility not to scare people off welcoming kids with disabilities into their worlds.

It’s an impossible juggling act, and one we navigate every single day of our lives. Just some days, we are better at it than others.

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.

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