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.

Fun With IEPs

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.




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:


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:


“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.

The Hazards of Living In A Musical Family, and other Updates on my Babies



Alex Blog 1After the LEGO movie a couple of years ago, Alex started singing “Everything is awesome” all.the.time. Woe was me. Then, knowing I loathed the song even more than I loathed the movie, he started teasing me by singing “Percy Jackson ro-ocks!” on the same tune. Then he got tired of Julianna’s obsession with Frozen, and he converted “Let it go” to “Let it blow, let it blow, and frozen goes kaboom!” Funny guy.

Last night, I decided two can play this game. I was washing dishes, he was watching Star Wars, and I heard Luke say, “I want to learn the ways of the Force and become a Jedi, like my father.”

I went into the living room and leaned down. “Hey, Alex,” I said, and started singing to the tune of “Do you want to build a snowman”: “Do you want to be a Jedi? Come on, let’s learn the Force!”


Glamourazzi blog 3I had Julianna’s IEP meeting yesterday. Apparently a lot of people dread IEP meetings (individualized educational program, for the inquiring mind). Well, I dread them too, but not for the same reason. Conventional wisdom is “never go by yourself. It’s overwhelming, all those people in the room.” I have no doubt that many people have found their opinions overwhelmed, but I’ve never had a bad experience at an IEP meeting. I’ve been very happy with Julianna’s team and I’ve always thought we’re on the same page. I just dread them because it’s yet another appointment for which I have to figure out logistics.

On the other hand, it’s a good check-in on her academic performance, because Heaven knows we never get any sense from her about what she’s learning in school. The news is that she’s still reading at grade level, even with comprehension factored in, although her ability to read words is much higher. But her math assessments show zero improvement. Interesting, because we’re still doing the regular homework all the other second graders are. The difference is that in order for Julianna to do that homework, I have to sit at the table with her and take her step by step through it.


Nicholas blog 2You know those family stories? The ones everybody knows, even if they were too young to remember them? One of those stories in our house is about Nicholas. He was three, and I decided it would be a special mommy-little boy memory if we went to Kohl’s to pick out Jerry Garcia ties for Christmas for his daddy. “These are a surprise,” I said. “These are Christmas gifts. We don’t tell Daddy about them.”

When Christian walked in that night, Nicholas went running toward him. “Daddy, Daddy, guess what? We got you TIES!”

I turned around from the stove and said, “Nicholas, you are FIRED!”

Last night, I took Nicholas—now 6 1/2, shopping for a new (that is, “gently used”) coat. In the bins at Once Upon A Time I saw a bunch of boots and sparkly shoes that I thought might make good Christmas gifts for Julianna. “Now, Nicholas,” I said, “this is a *secret. Because it’s probably for Christmas gifts. So you do NOT go home and tell Julianna.”

“The way I told Daddy about the ties?” he said, giggling.


“But I can tell her we have a Christmas present, right?”

“No, you may not. You have been entrusted with a secret. That is a responsibility. That means you don’t tell anybody.”

We came home and found Alex in the kitchen while the others were upstairs taking baths. “Alex! Guess what!” Nicholas yelled. “I have a SECRET!”

(Face palm.)


Michael Blog 3Michael came down from his bath while I was doing dishes and asked me to button his snowman PJs. I told him the price was nibbling on his belly, and he giggled a little and said okay. He was so darned cute. I mean, He generally is cute, but it was particularly concentrated cuteness last night. I sat down on the floor and buttoned his shirt, and he started to run away. “Wait a minute!” I said. “Get back here!”

He careened to a stop. “But I want to watch Star Wars!”

I gave him the over-dramatic sigh. “Oh, all right. But first give me a kiss.”

So he did. I lllllllloooooove little boy kisses, so I always make a big deal of it and act like his kisses knock me over. It makes him giggle, but last night he was in too big a hurry. He kissed and ran, and didn’t even notice my big dramatic flop on the floor. I called after him. “You’ve SLAIN me, Michael!”

Blue PJs paused. You could practically see his heart torn. Then he came padding back in, giggling, to kiss me on the other cheek. It was so sweet, I took mercy on him after that and let him go watch Darth Vader.

Obligatory paragraph about my Book Baby

Book Baby is misbehaving. I got a pretty rough critique a couple of weeks ago, and I lost all will to live for a while. But I think Book Baby and I came to a tentative understanding the other day and I can move forward. However, I now have a month full of weekly columns and two religious education presentations at the top of my docket, so my blissful weeks of no deadlines have passed, and now I re-enter the real world of slicing bits of time out of everything else to write a novel. I had hoped to be querying by the first of the year. One of my critique partners counseled me to let it take the time it needs.

Halloween this weekend. This year we get to trick or treat with cousins! Photos next week. Alex outdid himself again this year.