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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Mad Lib Theology

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Today, I visit my blog to talk about this girl:

Julianna ladybug

Wednesday nights, Julianna goes to “church school” (because it’s easier for little kids to say than “religious ed”) while we’re having choir practice. Usually, in the chaos of grabbing boys from the nursery, cleaning up octavos and books, and getting an overtired family of six out to the van 45 minutes past bedtime, we don’t even catch a glimpse of whatever work she did at school.

So this week, when we gave the choir a week off after Easter, I took Julianna to church school by herself, and in fact I did get a good look at the work she did. Are you ready for this?

Julianna theology

1. I am the Lord your 9: you shall be have mom gods before me. 2. You do not take the chalice of the Lord your God in mercy. 3. Bread to keep three the great Day.

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Once I got done giggling–I mean, it’s like a mad lib!–I realized I was staring at concrete proof of something I already knew: she’s really never going to “get it” from a class. Religious formation is one of the most conceptual things a child can possibly be asked to learn, and Julianna does not do “conceptual.” There’s value in having her in religious ed classes because going week after week teaches her that the faith is central to life. And she’s obviously picked up a couple of key words. 🙂

But with that paper in mind, the lesson I learned on Holy Saturday really gelled. We had gotten Julianna tickets to Disney on Ice at an 11 a.m. show in Kansas City. It was a two-hour drive, and we spent the time listening to the compilation of downloaded Christian music I made her for Christmas a couple years ago. (All legally purchased!) I chose these songs with the idea of having simple, hooky music that still had substantive messages, in order to teach her lessons about the faith. Because music is what Julianna does.

It was an incredibly uplifting drive, singing this music, with Julianna in the back seat decked out in her Miraculous Ladybug getup and dancing. She sang every word, and she danced as best she could while buckled into a seatbelt.

(That girl has jazz hands down.)

And I had this moment of inspiration: to take the essential Scriptures and write simple but hooky songs for kids like her–theologically sound, hopefully theologically dense–but still, simple? Methinks such a thing would be of use to a whole lot wider demographic than musically-gifted 11-year-olds with Down syndrome.

Which also brings up the question I want to ask of anyone reading today:

What songs already out there fit this bill for you?

In case you’re wondering, here’s the playlist we sang on Saturday.

 

The Multiplication of Rage

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fire-orange-emergency-burning.jpgYou know how muscles get stronger, right? It’s by being broken down. Stressing muscles causes micro-tears that allow for growth.

This seems a very appropriate analogy for life right now. I am going through a time of great spiritual…let’s call it development. “Reorientation” and “upheaval” both sound good, but they aren’t really accurate. Basically, I feel like I’m looking at a stressful situation (my life) and beginning to consider not just how to handle it but whether I’m making it worse by my own spiritual-emotional habits.

I meet weekly with a wonderful pair of women for faith sharing. We’ve been reading Henri Nouwen’s Life of the Beloved. It’s been a weekly occasion for mind-blowing, in beautiful but sometimes very challenging ways.

“How different would our life be if we could but believe that every little act of faithfulness, every gesture of love, every word of forgiveness, every little bit of joy and peace would multiply as long as there are people to receive it?”

The thing is, what Nouwen says of love, forgiveness, joy and peace is equally true of judgment, resentment, anger and intolerance. And when I say intolerance, I’m not referring to the common topics associated with that word these days, although it applies there, too. No, what I’m talking about is tolerance for irritation. For having our convenience thwarted. You know. The car that’s driving too slowly in front of you. The school district’s decisions about scheduled days off and weather days. The incompetent cashier or the inconveniently-timed software update.

Every January and every Lent, I spend a fair amount of time discerning how best to grow as a human being in these fresh seasons. Yet nearly every year, I get a few weeks in and discover that I’m off-course, or at least, not digging deep enough.

pexels-photo.jpgI’m angry these days. So very angry, all the time. Angry about big things, but finding that it gushes down into far too many of the little ones, too. Eroding my capacity for tolerance for hassles, for kindness to people who inconvenience me. Even my capacity to love.
I’m hardly alone. This essay came through my Facebook feed last week; the resonance of it left me speechless. The first few “top comments” prove the author’s point.

And I realized that I had to turn off the radio in the car again—not just for a few days, but for the duration of Lent. There’s no silence, no peace in my heart; I feel this frantic, well, franticness (to materialize a word) to fill every moment of blank mental space with stimulus, with information. We are desperate in the modern world, and we don’t even know what it is we’re desperate for.

I think it’s rest. A rest we can never find, because we’re strung so tight, the slightest little whisper of a breeze makes us vibrate. Silence feels like a threat, like walking on eggshells through a room where a very colicky baby has just fallen asleep after hours of constant screaming. We’re longing for rest, and also authentic connection. I mean, what else is the draw of talk radio, podcasts, and social media if not to feel like someone is talking to us? Accompanying us in our minor pilgrimages across town?

Yet the only way to get to a place of rest is to sit down, shut up, and shut down, and we have to go through silence to get there.

I’ve had the radio off for two weeks now. Not just off news radio, but off. And still, it’s hard. I thought it would get easier after a week’s withdrawal, but it hasn’t. I feel the pressure in my chest, in my brain, begging for relief.

We all know when we’re strung tight, we can’t roll with the punches; we have no give in our strings. We just snap. It’s no wonder I’m angry. Sure, there are plenty of things, legitimate outrages. But I can see how easy it would be to let anger and negativity crowd out every good thing about my life. Anger feeds on itself and grows bigger, more all-encompassing. As Nouwen said, they multiply as long as there are people to receive them.

I’d rather take his solution and multiply kindness and forgiveness.

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But dang, it’s hard to make that shift. We’re wound so tight toward rage, the force is nearly impossible to resist. You try to turn toward the light and the dark pulls you right back.

But we didn’t get here all at once. It’s been coming a long time, and we’ve encouraged it. I know I have. So I have to commit to seeking the light, again and again and again and again, until it at last feels like my home territory.

I’m writing stream-of-consciousness late at night, following choir practice when my brain is revved up and won’t shut down so I can sleep. (Ironic, given the topic, I know.) The danger in opening myself up like this is that people will judge and/or try to tell me exactly what I SHOULD do, which is not at all useful. (In case you missed the hint: please don’t! I don’t need more negativity in my world, and neither do you.) I’m not putting these reflections out as a cry for help or an invitation for judgment—quite the opposite. I think I’m expressing something that is a universal wound of modern life, in the hope that it will resonate, and help others to set sail on their own, desperately-needed journeys of the spirit.

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Parenthood is all about “Pantsing”

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pexels-photo-434446.jpegOnce, I was talking to a favorite uncle about life and all deep things. Because that’s what we do. (He’s a great uncle.) I said, “You know, when I was a kid, and something was bothering me, I’d think it through and make up my mind what to do about it, and that was it. I never questioned it again. Now, I never stop questioning things, no matter how many times I make up my mind.”

My uncle laughed. “Welcome to adulthood,” he said.

I was thinking about this last night as I listened to one of my children baring his soul about an experience that had hurt him deeply. It wasn’t a situation with a simple solution. He wasn’t at fault, but he was letting it get to him far more than was necessary or healthy. I told him what he had experienced was always going to be irritating—like mosquitoes you can’t escape—but he has a choice whether he opens up his heart and lets it hurt him down deep. Even though it doesn’t feel like he has a choice. That he feels things more deeply than other people do, and the first thing is to know that about himself.

A deep, heavy sigh. “Mom, I thought you’d be able to help me. Give me some advice or something that would help.”

Oohf. Speaking of opening up one’s heart and letting things hurt you down deep. This is not how a mom wants to be viewed by her child: as impotent. This is not how a mom wants to BE to her child.

Writers tend to split themselves into two camps: plotters and pantsers. (Those seem self-explanatory to me, but just in case: Plotters have a global plan in place before they embark on a novel; pantsers fly by the seat of their pants.) I’m sure it’s no surprise to anyone reading this post that I’m a confirmed plotter. Without a plan I would have no idea which way to go. I would write 5,000 words and then hit a huge wall, because I wouldn’t know where to go. It’s too big a task.

That’s how I feel about life, too. I want a plan, a way to organize the things that are Too Big, the things that are Too Much For Me. This is how I deal with anxiety: by planning for contingencies. Even when plans A, B, and C get derailed, merely having thought through everything prepares me for flying by the seat of my pants.

Last night on our oh-so-romantic Valentine’s date at Denny’s, Christian and I were discussing parenthood, and we came to the realization that although we are plotters by nature, parenthood is really a game of pantsing. You’re totally making it up as you go along.

No wonder we all make such a mess of it.

On the Need For Retreat

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I am sitting in the dark this morning. Despite my hopes, I woke up a little before five, but instead of the usual mad scramble to figure out how to make use of the time, I laid in bed and allowed myself to drift in my sleepiness, listening to the sounds of the retreat center, praying and thinking and trying to find that quiet mental place that seems so elusive these days, the place where God speaks.

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Image via Pixabay

This week, for a few days, I am at the Liturgical Composers Forum, a week that serves as my retreat: a time to pray twice a day in community, a time not to fill every spare moment with productivity, but instead to be still. Or anyway, as still as I can.

It’s always so shocking when the kids come home after school these days–the level of noise and splintering of attention. It shouldn’t be shocking; this is my normal. But the middle of my days, when I’m not running around, is spent inside my head. I don’t play music because I couldn’t concentrate if I did. I don’t talk on the phone. Sometimes I play my flute, but really my days are spent inside my head. And then the kids come home and everyone wants a piece. Julianna’s little “Mommy? Mommy? Mommy?” So patient when I am sidetracked, which is pretty much always. Then there’s the quintessential example. We went out for custard a few nights ago, and we were all sitting in a single booth at Freddy’s, and while I’m listening to Christian talk, my two youngest are reaching across the table to poke me, over and over, trying to get my attention. OVER-STIMULATION.

I totally lost my you-know-what last week. Wednesday. It was hormonal, but that’s no excuse. The night before had been one of those days: I had to run kids to piano and then come home and make dinner, then get a kid to basketball and make it back in time to teach a flute lesson. All of this with a bad, bad headache. So Alex was assigned to supervise Michael loading the dishwasher. The bad day began when I discovered, Wednesday morning, a dishwasher full of crusted, un-rinsed bowls of chicken pot pie. The job that had been given to kids, that should have been well within their capability to help ease the burden on the parents, had instead become more work for Mom than it would have been in the first place. That was where it started. It went downhill from there.

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Kinda like this. (Image via Pixabay.)

Once the kids left for school, I spent five minutes walking around the main floor and throwing everything the kids had left lying around into a big pile on the living room carpet, to make a point. And then I calmed down, and after school I approached the topic without histrionics and we got started cleaning. Deep cleaning that they would have been paid for if they hadn’t shown such consistent and blatant disregard for the amount of work their parents put in already.

And then I discovered that a week earlier after “cleaning,” Julianna had thrown the toilet bowl cleaner into the cabinet under the sink open AND SIDEWAYS. Well, you can probably imagine I did not keep my cool.

I could see the effect my histrionics were having on Nicholas, in particular. And felt horribly guilty. As if he doesn’t have enough anxiety without Mom turning into a shrieking banshee. And I thought, “I am so ready to be in St. Louis on retreat next week, where I DON’T HAVE TO DEAL WITH ANY OF THIS.”

You would think that one would approach a retreat week with higher motives. But maybe the truth is, the time we most need retreat is not when we are in a good place and seeking to grow closer to God. Maybe it’s when we don’t have our you-know-what together that we most need the time.

This post went in a completely different direction than I meant for it to go when I opened my computer this morning. Well, I’ll save that for tomorrow, I guess.

On Losing A Child, Recognizing the Value of Friends, and the Humbling Realization That Everyone Really Does Know Who You Are

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unnamedIt’s almost too complicated a story to explain. A group of parents were meeting Friday after school, at the Starbucks inside Barnes & Noble, to discuss a topic of mutual concern while the kids perused the books and toys. When it was time to go, I sent Nicholas to get Julianna from the children’s area, where she was looking at books and trains. “She told me no,” he reported back.

“Well, go and tell her she doesn’t have a choice,” I said, and began packing up. But by the time I took my leave and headed toward the children’s area, I met Nicholas coming back, saying, “She’s gone!”

I knew what had happened. She’s like the boy in the Gospel story. She says “no” but then later (in this case, within a minute), regrets it (or in her case, cognition catches up) and sets out to comply. Only she didn’t know where I was, because when we’d entered the store, she’d gone straight to the children’s section.

I expected to find her in two minutes or less. We’d barely started when the mother of Julianna’s school friend, who works in the store, came up to me and said, “Hey, how you doing?”

“Well, we’re missing Julianna,” I said.

“You want me to call a Code Adam?” she asked.

I almost said, “No, she’s here somewhere.” But then I thought: We are due at Christian’s work party at six, we still have Giving Tree shopping to do, and I have a lasagna in the oven at home.

“Sure,” I said.

Three minutes was long enough for the Barnes & Noble staff to determine that Julianna was not in the store. I went out to the van on the odd chance that she’d gone looking for us there—not that she could have found it—and as I turned around to run back to the store, a complete stranger flagged me down. “I saw her,” she said. “She came to the door, but then she went back inside.”

Inside, I found three other mothers, eight kids, and Julianna’s friend’s mother waiting for me. The moment they saw I was alone, they started splitting up the various wings of the mall—and Ms. M. called mall security. I gave my super-secret cell # to the mom who volunteered to wait at B&N with Alex, and then I dragged Nicholas and Michael out into the mall.

We checked the carousel, the bathroom, and the costume jewelry store before we got to Kidz Court and found a security guard checking there too. I went on to JC Penney and then back to Shoe Department, checking with the people at the mall entrance to make sure she hadn’t come in. We were getting ready to head for Target—because Target is our usual Mall destination—when Alex and another security officer intercepted us. “I’m shadowing the mother,” he said into his walkie, and steered me toward Game Stop and Santa Claus.

I couldn’t think why on earth she would be in either of those places, but it was clear they had a whole lot more experience at finding lost children than I did, so I didn’t argue. “She’s probably just talking to people,” Alex said as we power-walked down the main corridor.

I nodded. This is the common knowledge in our family: the problem with Julianna is not that she gets lost. It’s that she doesn’t know it. “I think we’re about to find out how long it takes Julianna to figure out she’s lost,” I said.

As long as I was thinking and problem solving, I didn’t have mental power for doomsday thoughts. This was about the time I thought: Christian’s work party no Basis because the Basi family is at the police station waiting for—NO! Chill. She’s fine! We’ll find her soon. She’s here somewhere.

The security guard went to talk to Santa and I went on to the woman at the makeup counter at Dillard’s. The guard came up behind us and said to her, “Can you call your security chief and ask him to check his security cameras for her?”

Oh, I thought. What a good idea.

We were halfway back to the main intersection when the call came in: “We’ve got her. She’s at Target.”

That was about the time my dying emergency-only flip phone rang; the mom who had stayed at B&N was calling to let me know the same thing.

When Julianna arrived where we were waiting for her, it was with a huge smile and open arms and great big giggles: “MOMMY!”

Alex and I looked at each other and laughed and sighed and shook our heads. “She didn’t know she was lost,” we said.

My mother-compatriots and the three security personnel were all like, “Are you okay? Do you need a cup of coffee? A drink of water? Do you need to sit down?”

“No, I’m good, we just need to go get our Giving Tree shopping done,” I said, and then thought: They must think I’m a complete sociopath.

And maybe there is something wrong with me. But it was much scarier, losing her in Kansas City. This time, she wandered off in a place where she knows her way around. She’s unbelievably spatially smart, especially considering her other cognitive difficulties. I’m not afraid that she’ll wander off into the middle of nowhere, because she likes people. She gravitates toward people, and sooner or later where there are people, she’s going to get found.

I knew this to be true, but I did not know just how true.

The next morning, we were at Breakfast With Santa, put on for our Down Syndrome family network. I shared this story with another mother. “Oh,” she said. “You know, (fellow DS group member) sent me an email yesterday saying, ‘I’m here in Target and Joanna is here without her mom, do you have contact info’? But I was like, ‘who’s Joanna’?”

And the day after that—Sunday morning—I was walking to the copy room at church to make copies of the music list before Mass when the religious ed director said to me, “Oh, I just got two emails from (teacher’s aide in Julianna’s religious ed class). She said, ‘Julianna is at Target without her mom. Do you have contact info?’ But I don’t check my email on the weekends, so I just got the messages.’”

I live in a city of 120,000 people. Not gargantuan, but also not the kind of town where everyone knows everyone else. This is the only mall for miles around, and people shop here from countless tiny towns in at least three of the four directions. Especially in December.

It was eye-opening—awe-inspiring, even—to realize that even in these circumstances, there are people who know us and care about us. And to realize that at any moment of crisis, my friends—friends I hardly ever get to talk to, because life is life, you know—have my back.

Eye-opening, awe-inspiring and very, very humbling.

Time

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I think the time has come.

I’ve really enjoyed blogging, but the interactions that used to take place on blogs have moved to Facebook, and it’s just too hard to justify spending the time, emotional and mental bandwidth anymore. My kids are getting too old; it’s no longer okay for me to share their moments indiscriminately, and I can no longer reflect on parenthood without sharing stories that are no longer mine to tell. I’m wrestling anxiety, partly personal, and partly because of what’s going on in the world, and the most important things I have to say, nobody wants to read.

I don’t blame anyone for that. I don’t read blogs anymore, either. It is what it is. We’re all emotionally exhausted by, well, life in 2017 America. Life itself seems angry. It’s hard to pull free of that. It poisons everything. And it affects us all.

The only antidote is to do due diligence before sharing things and reacting to them—to stop and reflect and read at least three or four different articles from varying points of view. But I can’t justify spending that much time when only a handful of people are going to read it anyway. It would be better to try to place those reflections in a larger outlet.

So it’s time, but it’s harder than I thought. I’ve sat here for most of an hour while my kids have piano lessons, staring at the blank window, checking Facebook, looking up Christmas gift ideas, because the idea of writing this post made me so sad. But I think it’s time.

Which is not to say I’ll never post here again. I’m sure I will occasionally feel compelled. But the time for regular posting has passed, at least for the foreseeable future. So click on that box on the left, below my picture, that says “Follow blog by email,” and if I do start up again at some point, you’ll be the first to know.

I’ve loved blogging. I’ve loved the people I’ve met, the connections I’ve been allowed to make. But it’s time to move on. Thank you to everyone who’s stuck with me this long.

See you on Facebook and Instagram.