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:

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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.

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Flute, Fermentation, and Farms (Photo Friday)

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It’s been a busy week–busy enough that I forgot I owed a blog post on Wednesday–so I’ll share some photos from the day trip I took yesterday.

I drove an hour and a half to the home of my college roommate to rehearse a flute-oboe duet for my recital next week. You know you have a treasure of a friend when you can get so busy, you don’t actually manage to talk for years, and yet when you manage to reconnect, you can pick up right where you left off.

KombuchaMy friend Elaine has been introducing me to the world of fermented foods, so the added bonus of visiting her was getting a primer on making kombucha and fermented vegetables–and a “mother” so I can start my own kombucha.

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On the way home, I needed to stop by my parents’ farm to pick up some paperwork. I decided to take the scenic route and drive past some of their fields on the way there. Almost as soon as I turned off the highway, in the distance I spotted the cloud of dust surrounding an enormous red combine that told me I had stumbled across my dad himself, starting the first day of corn harvest.  Even more improbably, he was unloading right by the road when I arrived.

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I took 10 minutes and pulled off to ride to the end of the field and back with him. It was a real spirit-lifter to spend a few minutes with him. We’ve gotten so busy in recent years, we haven’t gotten to spend much time riding tractors during planting and the combine during harvest.

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Then, of course, it was a flyby visit to the farm to grab the paperwork, and back on the highway. I rolled back into town just in time to pick up the carpool and come home to tuck my fermenting radishes into a corner and start a batch of crock pot yogurt. Today’s agenda: kombucha*!

*and laundry, and groceries, and IEP, and novels group critiques, and Jazzercise, and school event…

If You’re Not Outraged…

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Photo by Samovaari, via Flickr

We’ve been angry a lot this calendar year. Last calendar year, too, truth be told. The world seems made for making us angry right now.

But it came to a head in the last week, and in one of those convergences that can only be a sign of the Holy Spirit at work, for three days every single thing that happened served to put a neon flashing light on the message: THIS IS NOT OKAY. Even the weekend’s Scriptures.

It’s not that there isn’t reason to be angry. And as many people note, even Jesus got angry, knocking over tables in the Temple when he saw it being misused.

The trouble is, at some point, we start clinging to anger—we start looking for reasons to be angry, to the point that we become unable to accept with grace any thwarting of our own convenience, any deviation from our own vision of how things should be. And let’s be honest: there’s a whole heck of a lot about the world that is Not How It Should Be.

The convergence of messaging challenges me…my whole family, really…to figure out how to confront the Things That Aren’t How They Ought To Be without making anger an idol enshrined in our hearts.

I haven’t figured that part out yet. It’s the start of a new journey.

Adults Behaving Badly

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Photo by PMillera4, via Flickr

Everybody else’s families had been out at the ballfields for nearly four hours by the time I got back there last night—even the four-year-old little sister of Alex’s teammate. I was the slacker; all I’d done from 4p.m. on was take kids to piano, pick up dinner at Hy Vee, drop Nicholas at cub scouts, cross town to drop Alex off at baseball, pick Nicholas up, take kids home, supervise packing lunches, get kids ready for bed, and continue triage from the weekend’s kid drama.

(In case you’re wondering about division of labor in our house, Christian has been working 60 hour weeks for quite a while now, and he was teaching piano last night following another brutal day while I was taking point on everything else.)

It was a beautiful night, but by the time I arrived, at the top of the third inning of the second game of this double-header, Alex’s team was obviously worn out. It was about 9:30 p.m. when it happened: someone took issue with a call by the home plate umpire. There was widespread confusion on both sets of stands: was the kid out? Was he safe? What was going on? Momentarily, the game sort of ground back into motion.

It was a couple minutes before I realized a group of parents was converging behind the backstop, exchanging words that were escalating steadily. Pretty soon there were expletives, and threats of violence. Then suddenly one of the players was in the middle of it. People were stalking off, turning around, coming back for more. Apparently a parent from the other team had threatened the father of one of the players on Alex’s team with an – – – kicking.

To his credit, the umpire kept his cool, and eventually turned around and stopped the game—by now it was past 9:40p.m. on a school night—and said, “Folks, we’ve got one out left. Let’s just get this game done and get out of here for the night.” At least one parent stormed off, yelling, “Tell me when you’re ready to play real baseball!”

The fact that a judgment call made by an umpire could spark this level of anger? This is wrong on so many levels.

It’s…a…REC LEAGUE, folks.

These kids are TWELVE. And THIRTEEN. They’re not even in HIGH SCHOOL yet. There are no scholarships being won or lost at the American Legion fields on a Tuesday night.

Plus….

IT’S A GAME.

For KIDS!

IT’S SUPPOSED TO BE FUN.

And what kind of example are you setting for your kids about the right way to handle setbacks?

I confess: I am not now and have never been a sports person. In fact, the general obsession with sports in America, to the exclusion of the arts, is a source of continual irritation to me. (I heard about a school that requires kids do be in a sport EVERY SEASON. I longed to ask, “Do they require kids to be involved in an art as well?” But I decided the answer was likely to make me angry, and life offers plenty of emotional stress without going in search of more.) What quality sports experience exists independent of music and visual arts and a well-crafted turn of phrase? Not a single one.

Still, not liking sports myself doesn’t preclude me supporting my kids in playing sports. They love playing, and it is a great opportunity to learn teamwork and grace in both success and failure. And the simple importance of making physical activity a long-standing personal value, something integral and normal to life, can’t be overstated.

But sports can teach kids the opposite lessons, too. Especially when parents behave like they did last night. Which is why I’m calling them out this morning.

When You Feel Like A Punching Bag

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As anniversaries go, it wasn’t our best.

And it should have been, because my parents had given us free babysitting for the night. But the work stress is sky high, and so when the result of an hour’s worth of restaurant research ended with us facing a closed restaurant instead of the upscale dinner we’d been anticipating, it was harder than it should have been to regroup.

We learned long ago that if we don’t go into a date night with a plan, we’ve got a 75% chance of being grumpy about it.

That night, we learned that having to dump a clear plan in response to forces beyond our control, when we’re carrying a lot of other stress, yields a 100% chance of being grumpy about it.

We went to watch Wonder Woman (the last people in the universe to do so, no doubt, but such has been our life in the year 2017), and salvaged the evening, went to bed and regrouped for the next day.

But the next day greeted us with a one-two punch. First was the email that made it clear that the permission slip fight we’d been praying had been averted most definitely had not been. As if we need another thing to deal with, but how can you not? Being caught between witnessing the faith you believe in and compromising for the sake of your child’s disappointment is a crappy position to be in. So we had to break the news to a child that he wasn’t going to get to go on the field trip he was looking forward to. Ten minutes later I went into his room to see how he was doing emotionally, and found him hiding under his bed, sneaking extra screen time.

We had planned to take the entire family to see Cars 3, which was back in theaters for a reprise and which we hadn’t yet seen (see: such has been our life in the year 2017), but clearly, that level of dishonesty can’t be allowed to pass without consequences.

I really do feel kind of like life’s punching bag right now. This whole year has felt this way, in fact. Which is ridiculous because my home isn’t threatened by wildfire or floods, my children are not in the hospital, and we are not facing job loss. All of which have been experienced quite recently by people we know.

But sometimes it’s not the big sucker punch that knocks you down—it’s the barrage of little things piling on you until you’re weighed down like that junk lady in the movie Labyrinth.

After writing that last paragraph, I put this away for a day, thinking I probably wouldn’t post it after all–only to have another occasion of child dishonesty pop up last night, just as I began the descent into a swollen, firey throat-head pressure kind of virus. Which, of course, is the icing on the poison ivy-on-my-scalp-where-I-can’t-get-at-it cake. And the sauce on top was the first rejection letter on my novel.* Fun day, yesterday.

This is the part where I’m supposed to draw some nugget of wisdom, some uplifting pearl, but the truth is, today I just kind of want to acknowledge that sometimes life is pretty crappy, even when it’s minor crap, and pray that I/we can hold on for better times ahead.

*Note: happier news on that front today.

When Kindergarteners “Play” “Baseball”

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Face 1Watching kindergarteners “play” “baseball” is a one-hour comedy routine. Among the gems:

– a cute little boy who hits the ball, stares at it open-mouthed, and then, with all the parents shouting for him to run, runs…to third base.

– Having been thrown out at third, everybody says, “First base, buddy! First base!” He proceeds to run straight across the infield, just in time to get out again at first. (Good thing nobody actually gets “out” at age 5.)

– (mother in the stands, to a boy at bat): “Billy! No lightsabers!”

– the little girl standing at home plate crying as the coach throws her pitches, which she doesn’t really try to hit, and when she does hit one by accident, she turns to the backstop and wails, “MOOOOM!” At which point the long-suffering mom jogs with her to first base.

– Michael, at first base, dancing/making friends with the runner he’s supposed to be guarding.

– a batter who hits the ball, then runs after it and fields it himself.

Have a nice Labor Day weekend! I may or may not blog on Monday. I leave myself the option to take the day off.