IEP Day

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IEP

This is what #IEP prep looks like: notes from parent advocate, part A and B. The first draft of the IEP, from which the comments came, split in two: the half we got through last week, and the part we have to do today—the goals, i.e the basic shape of her middle school experience. Finally, draft 2, which we will finish marking up today.

This is our 10th IEP meeting. Our first happened in preparation for her entry into ECSE (Early Childhood Special Ed) shortly before she turned 3. This is the first time we’ve hired a parent advocate, having realized over the past year that we have, in fact, been delusional the past 9 year in thinking we had a good enough handle on the process that we could do it on our own. And I have to say, I’m so much more relaxed this time than I have been in the past because there is an expert in the room who’s there just for us.

Even so, this is inherently a stressful process. What you can’t see from the picture is that each of those drafts is 20+ pages long. It’s a mind-boggling amount of information, written in lingo like this:

“Julianna will use clear speech (over-articulation) strategies at the sentence-level in 80% of opportunities. Baseline: 60% in structured speech activities at the word-level, with visual cue only (e.g., written minimal pairs).”

Did you all follow that?

My guess is that most people who have never been through an IEP were like me, completely unaware of the complexity of the process. Even now, I can sense eye rolls. Why the lingo? Why does it have to be so complicated?

Well, to effectively administer something like special ed, you have to have specific, measurable targets. And as targets zero in, you end up with specific language to make clear the distinctions. Ergo, lingo. Let’s face it. Who but a speech therapist would ever think of the fact that you can struggle to say “f” and “v” in three different places in a word–beginning, middle, end? Until it happens to you or your kid. (Oh, but that’s a different goal. I spared you that one!)

The process is what it has to be–but it is hard for parents. Hard to keep it all straight. Hard to understand. Hard to gauge the right level for pushing the envelope yet not overreaching.

What the IEP process doesn’t do, we realized, is create the specific shape of her days. Last spring, we spent 3 hours in an IEP meeting creating what we felt was a good plan, with 61% of her time spent in reg-ed. But in the fall, we found out those reg-ed minutes were so splintered, they were all but irrelevant. We had to have another hour and a half meeting to rearrange the schedule so that she could actually spend meaningful blocks of time with her peers.

It worked. She now has a group of typically-developing girls that she pals around with during the day. But the IEP didn’t guarantee that.

As always, posts like these run the risk of making special needs look like all stress and drudgery–and scaring off parents confronted with a diagnosis. But I really want the general population to get an idea of what supports are needed, because disability is kind off the radar for the vast majority of people, and even for those who do have it on their radar, it’s easy to underestimate the experience and think, “Why are you people making such a big deal of these public policy questions?”

We’re making a big deal of it because from inside the situation, the stakes are so high.

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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.

The Gift I Have To Give Is Me

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We just came through parent-teacher conference season again, and what we learned in Julianna’s home visit was that although she can read a page that looks like this:

genesis

her comprehension is stuck on pages that look like this:

corduroy

For anything more complicated than Corduroy, I have to sit with her, read with her, and stop her at the end of every page to ask comprehension questions. Which is soul-killing work, I’m telling you. If I harbored any lingering guilt for never feeling the slightest attraction to home schooling (which I don’t), this would have done away with it. This is not my charism.

And yet…after only doing it 3 times—over the course of a week, mind you—her assessment score went up, ummmm, 100 points.

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Yesterday I decided to take advantage of the hour we sit at piano lessons to catch Julianna up on her “church school” homework, which has been sitting in a growing pile on the table for weeks. Here’s a small slice:

“Telling our sins to the priest is called…what?”

Julianna: “I don’t know.”

Me: “God is willing to forgive us when we are truly sorry…never, sometimes, or always?”

Julianna: “Never.”

Me: “Um…Does God forgive us?”

Julianna: “No.”

Me: “Um…yes, sweetie, he does.” Pause to regroup.

Me: “When we pray an act of WHAT, we tell God we are sorry for our sins?”

Julianna, pointing triumphantly at the second of three options: “CONFESSION!”

Me: “No, honey. Contrition.”

Clear throat to regroup. Let’s try a different page. Oh, that one has pictures! There’s a lady at the ambo in one picture and a priest with a paten and a chalice in the other. This will be successful.

Me: “What do we call this part of the Mass? The liturgy of the…?”

Julianna: “Hours!”

Me: (befuddled that she even knows that term.)

All this has made me realize two things:

1. I have to sacrifice my time to work more with Julianna. But not just Julianna–the other kids, too. Most of my recent negativity was due to the stress of being overcommitted, but some of it was also because the kids are just ignoring the most basic lessons, spacing them out. Like “take your shoes off and put them int he cubbies when you walk inside.” Or “rinse your breakfast dishes and put them in the dishwasher.” I shouldn’t have to tell every person to do this at every single meal and every single house entrance—but apparently they’ve learned bad habits, and if I expect them to change, I’m going to have to grit my teeth and put some self-sacrifice into it.

2. I have to accept that Julianna’s understanding of the faith is probably going to be even farther behind her age than her reading and math skills…and it’s not the end of the world. Because she participates in the liturgy with gusto, and mystery can do its work even if she never in her life gets the finer points.

I’ve been puzzling for several weeks about what to “do” for Lent. I know I need to take time every day to “be still,” but I’ve also toyed with a Facebook fast and even a writing fast (fleetingly). In writing this post, I realize at last what my “alms” are to be this year: a gift of myself, to my children.

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 Un-Twinning of the Littles

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She still looks older to me, but maybe that's just because I know.

She still looks older to me, but maybe that’s just because I know.

It lingered so much longer than I expected.

When Nicholas first left babyhood, he seemed like Julianna’s developmental twin. I expected it to last just a few months, but the twinning grew firmer and firmer. For over three years, they have kept pace with each other, Julianna managing to stay just far enough ahead in key areas–like reading, for instance–to counterbalance Nicholas’s exploding cognitive and speech capabilities.

I should have realized, when I started referring to “the little ones” and meant Julianna and Michael instead of Julianna and Nicholas, that the twinning had passed at last.

But I didn’t. Not until Friday night, when we had company over and I caught a snatch of conversation between Christian and Nicholas. Christian said, “But Nicholas, Julianna’s older than you.”

“No she’s not! I’m older!”

Christian and I exchanged a look across the room: half amused, half pained. “Nicholas, you are not older than Julianna,” I said. “Julianna is two years older than you.”

You should have seen the incredulous, rebellious look on my third-born’s face.

How in the world did we miss this long enough for him to internalize a wrong-headed view of the world that thoroughly?

Julianna keeps to herself a lot. She’s not big on playing; she likes listening to music and reading books. And swinging. She loves to swing. She’d still rather ride a tricycle than get on her bike, because she’s intimidated by the size–although she can ride it. She’s expected to do chores, but they’re the simple sort: pull the chairs out of the kitchen, bring the dishes to the sink.

Meanwhile, Nicholas is learning concepts and play skills and chore duties by leaps and bounds. We intended to pull the training wheels off his bike this summer; I just didn’t get it done because my work load was heavier than I had realized. He outweighs her, although he’s still marginally shorter. He cleans the bathrooms (though not necessarily very well) and makes his bed. He’s writes as legibly as Julianna (which is to say, not very), although he can’t spell and she can.

And this is all about to intensify, because Nicholas is starting kindergarten in a week. Since we held Julianna back, she’s only a year ahead of him in school.

One of the things that comes up periodically at Down syndrome conferences is the reminder that we have to let/force our children to grow up. Julianna is seven and she thinks she has to have me put her shirt on for her. She still wears her underwear sideways (can you imagine being skinny enough for that even to be possible?). And I know she can’t brush her teeth well enough to be left on her own.

It’s ridiculous that we haven’t tackled independence for her in these areas–but that’s a response to being so crazy-busy. With four kids and a mom who works at home, the practical aspects of life turn into an assembly line: meal prep, morning ablutions, bath time. The focus lately has been on getting Michael to talk. There’s only so much parental effort to go around. Sometimes you just opt to sacrifice independence to the concept of get it all done.

But that’s not good enough anymore. It’s not fair to her. Because she isn’t a “little one” anymore. I have to stop treating her that way.

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.