What I Learned From A Kindergarten SpEd Re-Eval

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J birthday 034

Carousel birthday Cake, a la Mommy

About a month ago, Julianna’s school finished her “re-evaluation.” This is required every three years under the IDEA, presumably to ensure that kids who are receiving expensive special ed services still need them.

Julianna entered the mid-kindergarten eval with a diagnosis of “young child with developmental delay,” a dx that does not carry into the elementary/secondary years (for obvious reasons). So, beginning mid-fall and lasting until Christmas or thereabouts, she underwent a battery of assessments for language, behavior, speech, motor, and academic skills. Even an IQ test, about which we were intensely curious. Hearing the number 60 was a bit of a reality check; it’s one thing to recognize that your child is and will always be delayed; it’s another to see it quantified. Somewhere deep inside, you keep hoping your kid will pull out a 69 and almost squeeze into the “normal” range.

In any case, the end result of this re-eval was–wait for it–an IEP meeting in which we went over the report and incorporated the results into a new plan. Ten people in the room, copies for everyone–nauseating amounts of paper, because the god Privacy forbids electronic dissemination. We moved quickly, with many interruptions caused by the three children in the room (one of whom was trying to eat every toy block in sight), so it wasn’t until the formal report came that I sat down to really read and process it in depth.

carousel craft

Apple, straws, peanut butter & animal crackers = a great, edible carousel birthday party craft.

When your child goes off to school, you automatically lose a certain intimacy. No matter what you do, you can never quite pry out of them what their day is like now. Their routines are unremarkable to them, so they don’t see anything to share. You ask “What did you learn in science today?” and you hear: “We didn’t have science.” You know they must have, they just didn’t recognize it as such, but without a beginning point there’s no way to pry the layers back and understand exactly what’s going on in the hours he or she is away from you.

If it’s that hard with a verbal child, imagine the dearth of information when your child doesn’t communicate by speech at all, or at least, only at the most surface level. So this report was really enlightening. It didn’t tell me about the school days or the routines, but every so often a nugget would pop out that I recognized so clearly, I could picture the entire scene:

“It was often unclear whether she was simply repeating the presented words rather than making an attempt to respond to the items.” Check.

“When asked to write numerals in sequence, Julianna wrote the number 1. When asked to write other numbers, she wrote the number 1 again.” Ouch.

“Julianna would sometimes point to several pictures on the page and was reminded that she could only point to one. This test was given over 2 sessions as she would start pointing randomly.” And giggling with a sly Miss Charming look on her face, no doubt.

“Julianna appears to enjoy socializing” (you think?) “and will wave hi and bye to many adults and peers.” Yup.

“She is a risk-taker.” Uh, yeah.

Concurrent with this is the formal discernment by the Catholic school administration as to whether they can realistically serve Julianna there. I am so torn on the subject. I want her in an environment where faith formation is “in the air,” and I want to have one PTA, one fundraiser, one school calendar to deal with.

And yet…she really needs speech intervention every day, and I will have to transport her myself (barring carpools, but you can’t count on that.) The public school has been wonderful–I love all the people. Her speech therapist calls her “chickadee,” and it makes me all warm and gooey inside. Her para and her teacher are particularly wonderful, and all the necessary infrastructure is right there. Her classmates are incredibly sweet to her. It has been a wholly positive experience, and even considering moving her feels disloyal.

It’s a good position to be in, so don’t take these reflections as complaint. But this is a part of the special needs parenting process, so I share it for the benefit of…well, whoever needs it.

I am being paged for a game of Spot-It. Bowing out for the day.

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A Regular Kid

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She’s a charmer, my girl. Adults everywhere within her sphere of influence fall obediently like dominoes into line behind her, excusing her foibles and focusing on her angelic qualities. She knows it, and she knows how to use it. I can’t tell you how many times people have come to me literally hand to heart, sighing, “Oh, she is so sweet!” or “What a cutie!” or “Oh, we just love Julianna!”

I’ve gotten a bit smug about it, truth be told. Only her siblings, parents and grandparents are allowed to wag fingers and list her character flaws.

So her first kindergarten report was quite a shock. “She definitely needs the para,” her teacher said a little over a week into school. “When the para is working with other children, that’s when Julianna acts out, getting up and moving around the room, poking people or pulling hair.”

Irrational though it seems, my first instinct was to haul out the Mother Bear Claws. How dare you imply that my daughter doesn’t have a halo?

Now, don’t get me wrong. Her teachers like her just fine. But up ’til now, Julianna’s had a fan club comprised of a) friends of her parents and b) people in the disability field. Those who work with special needs are a special kind of person themselves, deep in empathy, with, I truly believe, a greater capacity for love than the rest of us.

It’s a wholly different matter to toss her into a regular classroom. I’ve loved every one of my kids’ teachers, but none of them have ever bonded to my children the way the special ed teachers and therapists bonded to Julianna in her first few years. How can they? The level of intimacy isn’t the same. In baby- and toddler-hood, it was one on one. In preschool, Julianna’s early childhood classroom had 9 students with at least 2 adults on hand at all times. It’s a far cry from a classroom with 18.

As I talked myself down off the Mama Bear pedestal, I began to realize this is a pretty valuable thing we’re receiving. Now, Julianna is being treated much more like every other kid her age. Her teachers and therapists have always pushed her to do her best, but now it’s an unemotional expectation instead of a cheerleading squad behind her. Just like every other kid. She was always guided toward appropriate behaviors, but there was always a loving tolerance that no longer exists; now, she’s expected to do the right thing, just like everyone else.

It’s a gift for her to be treated like a regular kid. Christian and I are people pleasers, hard-wired to want to make authority figures happy, constantly analyzing and on the hunt for ways to pursue excellence. So is Alex. So it’s an adjustment for us to see our free-spirited little girl tear through the world on her own terms. It stretches our minds, and it stretches our hearts. But the more of life I live, the more I value being able (read that: made) to stretch.

On a more fundamental level, it’s such a blessing for her. It’s good for her to have her sense of self as center of the universe kept in check by not being above the “law.” It’s an understanding she needs in order to integrate into the world. So I’m sheathing my claws and embracing having a kid who doesn’t get glowing progress reports every week. Go Julianna. The world is yours.

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October is Down Syndrome Awareness month, and a lot of people participate in “31 for 21,” promising to post every day on T21 and related issues. I think I might even burn myself out if I tried that, to say nothing of you fine people, so I’m just going to devote Wednesdays to the topic of my darling girl.

Miss Pooey Goes To Kindergarten

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The first Friday of kindergarten, Julianna brought home a progress report. In typical kindergarten fashion, it was a list of attributes the kids need to have to be successful students–following directions, self-control, and so on. There are no grades in kindergarten, only +, √, and -. I got quite a shock when I saw her page filled with “-” and a smattering of √s. Not a + on the page anywhere.

Now, I’m sure you will not be surprised to learn that I have been a straight-A student my whole life, a meticulous rule follower. Alex is the same way. So to see a report like this was quite a shock to my system.

Who was she being measured against? What were they trying to communicate? Was she not living up to the standard of a typically-developing kindergartener (in other words, this was par for the course), or was she not living up to what is reasonable to expect for her? Does it matter? After all, if we want her in a regular classroom, we have to expect her to be held to the higher standard–and that’s what we want, right?

Such are the agonies of a parent of a child with special needs.

I didn’t realize it, but I have always taken kindergarten more seriously than preschool. When we needed to go somewhere, I just pulled Julianna out of preschool. We didn’t know all that much about the daily routine–we weren’t able to have a conversation with her about what she did all day, or what they talked about–but that was okay. Preschool was really about intensive therapy.

Kindergarten is a whole new world. This is where she’s actually supposed to be learning academic concepts. This is where she’s actually interacting with typically-developing peers, laying the foundations for whatever life she’s going to live as an adult. Suddenly, the stakes seem so much higher. Suddenly, it bugs me that I don’t know her classmates and she can’t tell me about them–that I don’t know her routines, and she can’t share them.

I went through this with Alex. Sending your child off to school automatically requires the parent to give up some control. The child doesn’t know what you want to know, and you can’t formulate the questions properly to get them to understand. It was very illuminating to go into Alex’s classroom for an hour one morning, and I’m in the baby stage of trying to work out logistics to visit Julianna’s classroom for a peek.

In the meantime, we’re more or less dependent on her teacher, who has been very good about sending us detailed reports. Many of which make us go, “Whaaaa…?” For instance, in the early weeks, when the para was not working directly with her, she would get up and move somewhere else (totally believe that), poke other kids (probably trying to be cute), and pull hair (uh…what?). She was uncooperative in P.E. and adaptive P.E., where there was less structure. Now, Miss Pooey has always been pretty cooperative with non-parental adults, so this caused us some consternation. But we haven’t yet begun enforcing “if…then” consequences with her, because we don’t have the sense that she “gets” it. If we had gotten a report like that on Alex in kindergarten, there would have been repercussions at home: lost movies, etc. But how do we address this with Julianna?

At last I found my entry point. She likes to watch her signing times and “your baby can read” videos from a distance of one inch from the TV screen. We’ve been yelling at her about it for a long time, but I realized suddenly last week that here is an opportunity for immediate consequences. So now, if she goes up to the TV, she loses the privilege. We’ll see if that makes a difference.

I have many other reflections on the experience of sending Julianna to kindergarten, but that’s plenty for one day. This week, she brought home one extra √, and her teacher said the problem behaviors were easing off. So maybe, twenty-five days in to the elementary years, Julianna’s finding her stride. Go get ’em, girly-girl.

Isaac, Julianna’s schooling, and The Incredible Backward Boy: a 7QT post

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English: Hurricane Isaac

English: Hurricane Isaac (Photo credit: Wikipedia)

“Oh Iiiii-saaaaac. Here boy!!! Come on! Come here!”

This was my sister’s Facebook status the other day, and I laughed out loud. By afternoon and evening today, our part of the country is supposed to be receiving the remains of Hurricane Isaac. And I don’t know anyone who is anything other than thrilled, and holding our breaths, praying fervently that it actually happens! Last weekend we were promised 80% chance of rain here both days. The weather forecasters told us that if Isaac stalled out right where it was (which happened to be over Haiti), the rain here would hang on through Monday. How do you pray in those circumstances? Whose needs come first? The people still living in tents and abject poverty, or the worst drought in fifty years, which has worldwide repercussions for food production and cost?

Well, it didn’t matter. Saturday passed with nothing more than a pathetic sprinkle, and Sunday we got 4/10 of an inch late, very late in the day. My parents began harvesting last weekend. Corn is expected to produce over 100 bushels per acre. That first day, my parents got 30. And they still don’t know if the soybeans will produce anything at all.

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Which leads me to another pet peeve of mine: what we pray for communally. I’m well aware that I don’t live in a farming community, but I can’t stop being frustrated that we remember to pray for military members every single week at church, and we don’t pray for agricultural issues even when huge swaths of the country are undergoing severe hardship. Understand, it’s not that I object to praying for the military, because I don’t. I just object to the fact that we seem to be communally blind to the segment of the population that provides us with, I don’t know, EVERYTHING WE EAT.

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Here’s a telling sentence from Julianna’s new IEP: “Julianna will comply with 2-3 step directions with one verbal prompt beyond the initial direction. (Refraining from avoiding eye contact with the adult, and covering her face.)”

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Reading this got me started thinking, and made it clear to me that Nicholas has at last outstripped his sister in almost all developmental areas. One morning, he spilled milk on the floor. I told him to use the stool, get a paper towel, and clean it up. At the time I was thinking about the fact that I still had to problem solve for him how to get the paper towel, but in retrospect I realize that series of directions is still beyond Julianna. For her to accomplish the same thing, I would have to hover over her and issue each stage, more than likely several times. I’ve been thinking it’s mostly behavioral, but now I’m not so sure.

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On the up side…are you ready for this? Watch this video we took of her before school yesterday. It’s less than a minute long, I promise. I don’t want to tell you what it is because I don’t want to spoil the surprise. 🙂 Though if you’re on Facebook with my husband, you’ve probably seen it already…

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Not that all is well in Julianna-land. We learned from her teacher yesterday that when the para is working with another child, she pokes other kids, pulls hair, or gets up and moves. Aside from the hair pulling, which makes me go “Whaaa?” the rest of it is just mischief that she hasn’t learned isn’t appropriate. She can’t talk to people to tell them she likes them or wants to be with them, so she does it by touch instead. She just doesn’t realize how annoying it is.

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I am single parenting this morning which means I have to have everyone ready to leave in 1 hour to take Alex to school, so I’ll leave you with this: the Incredible Backward Boy.

Your eyes do not deceive you: he is wearing his shirt and pants backwards, with his shoes on the wrong feet! I love self-dressing. 🙂

Have a great weekend!

7 quick takes sm1 7 Quick Takes Friday (vol. 186)

Julianna’s New Schoolyear

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

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

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

Really?

Wow!

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

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

Back-To-School Takes

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We went to the pool on Wednesday. I put one toe in the water and realized pool season is over. Amazing, what ten days of cool weather can do. We washed all the suits and are officially retiring the pool until 2013.

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I’ve been feverishly juggling end-of-summer, beginning-of-schoolyear commitments with DEADLINES. Which is how the word looks in my mind these days–all caps, rife with foreboding. Still, the process of writing for the religious market always inspires insights. As I was writing about the sacraments yesterday, I found this in the Catechism: “The Anointing of the Sick completes our conformity to the death and Resurrection of Christ, just as Baptism began it. It completes the holy anointings that mark the whole Christian life: that of Baptism which sealed the new life in us, and that of Confirmation which strengthened us for the combat of this life. This last anointing fortifies the end of our earthly life like a solid rampart for the final struggles before entering the Father’s house.” (CCC1523) Isn’t that just a beautiful way to look at it?

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We had three First Days in a row this week. Three days, three kids, three schools. Nicholas began the new school year by starting preschool two mornings a week:

Gotta love that belly

Oddly enough, two out of seven kids in his class have the same name, so he’s been dubbed Nick by his teacher. Ah well. It couldn’t remain in my control forever.

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On Wednesday, Alex started second grade:

I volunteered to play piano for the holy day Mass, so I snapped a shot or two while Alex was wrapped up in the priest’s homily. (He’s a Dominican, and he always uses tacticle props to engage the kids.)

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And Julianna rounded out the week by starting kindergarten on Thursday.

Using Daddy’s backpack, because hers mysteriously vanished at the moment it was time to leave for school. It reapeared late in the afternoon on top of a shelf.

I walked her to the cafeteria, and when I saw the mayhem of almost a hundred kindergarteners, I decided I’d better walk her through the “breakfast” line before leaving.

Whatever, Mom. You and that camera. Just leave already, will you?
(Why yes, your eyes are not deceiving you. What the public school calls “breakfast” is, indeed, Teddy Grahams and icing-covered snack bars. Miss Julianna will not be skipping breakfast at home, let me assure you.)

It was a bit nerve-racking, because I left her without direct supervision, but I reminded myself that if we want her to be able to operate in a generally inclusive environment, we have to, y’know, back off. She came home from school happy, so she seems to have done fine on her first day.

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This is my life these days. Note the precarious angle of the sugar canister and the two canisters on the floor. Michael’s four front teeth are coming farther out of his gum every day, and when he smiles it is with a rakish, “My name is trouble” attitude. He’s huge. Christian calls him “Butterball,” and routinely tells people we’re going to have him for Thanksgiving dinner.

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As I tucked Nicholas into bed, I asked, “Are you ready for another day of school?”

“Yeah,” he said. “Twenton is the wine wheeler.”

“The what?”

“The wine wheeler.”

“The wine wheeler?” I said blankly. I started doing consonant substitions in my head. “Oh, line. Oh! Line leader!”

“Twenton’s job is to tell ev-wy-one, ‘Wine up!'”

Sounds like good advice to me. Everybody, ’tis the weekend. Wine up!

7 quick takes sm1 7 Quick Takes Friday

Confounded by a Primary Composition Notebook

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School Supplies Pencils Erasers August 07, 20103

School Supplies Pencils Erasers August 07, 20103 (Photo credit: stevendepolo)

Early Friday morning, we loaded up the van and headed for Target, armed with three school supply lists and Christian’s iPhone to calculate whether it’s better to buy 18 small glue sticks or 9 large ones.

I had compiled the three lists into one so we’d know total numbers without having to cross-check lists, but questions kept arising, and I’d have to refer back to one list or another. Filling the boys’ was pretty straightforward, but as we picked items off the shelf for Julianna, I found myself for the first time really contemplating the disparity between her and her soon-to-be classmates.

There are things on Nicholas’ preschool list that he can use, and she, a kindergartener, can’t.

There are things on Julianna’s list that made me stop, kerflummoxed. A primary composition notebook? Really? She’s still in the scribble-all-over-full-sheets-of-paper stage. A composition notebook is a very poor use of money for her.

I thought back. Yes, of course, Alex wrote in one of those notebooks. It’s a perfectly reasonable item to place on a kindergarten list.

It was just that I hadn’t really processed how far delayed Julianna is. I’ve consistently said she’s really close to on-target in her understanding–she knows letters and colors, for instance, and she can count to five and sometimes higher. It’s just her speech, I said, that makes people think she’s so much farther behind than she really is.

But a primary composition notebook?

“You’re the one who said you wanted her to be included more,” Christian reminded me; in other words: Don’t overthink the list, let her be like her peers. And he’s right, of course.

It just drew the distinction in a way I wasn’t quite prepared for.

Last night as I helped her brush her teeth, Alex came into the bathroom. He’s far too tall now for the stool Christian made for him, the stool both Julianna and Nicholas have to use to reach the sink. But tonight, for some reason, he climbed up beside his sister, reached across her for a cup. Julianna turned her head, gave him a big goofy grin, and put her arm around him. She stuck it at a right angle to her body, and wrapped Alex’s waist.

His waist.

They are less than two years apart.

Afterward, I came downstairs and faithfully copied her school calendar into my planner, just like I do for Alex, just like I do for Nicholas. There were things I found exciting. Movie nights. Parent teas, a fancy dinner on Valentine’s Day for the kindergarteners.

And yet I’m scared. Intimidated. Our first public school. Julianna’s first foray into the real world, where she’s going to interact with the un-walled-off population of the world without us around to guide and protect her.

(That’s not really true; we sent her to children’s liturgy by herself yesterday, and she did great–came back all by herself, just like any other kid. But still.)

The week before Alex started kindergarten, I was awash with excitement for him. Today, my feelings are much more ambiguous. It’s poignant. Bittersweet. Kind of nerve-wracking.

I’m sure she’ll continue to leave a string of touch points behind her, as she always has. I’m sure she’ll charm everyone. But it’s a different experience this time. Alex was ready to fly the coop. I knew it, placidly, comfortably. Julianna’s ready, too–at least, she thinks she is. But I’m nervous about pushing her out of the nest.