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.

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.

Fun With IEPs

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Step Up Walk

This weekend at the Step Up For Down Syndrome walk in Kansas City, with a friend we don’t see too often because of distance (and busy-ness!)

Fun fact: I spent 2 1/2 years as a music ed major before deciding all I really wanted to do was play my flute, and I universally hated every one of my education classes. The class that broke me and caused me to switch? Special Education For Non-Special Educators.

It took me until Julianna was in the 2nd grade to realize that class, as much as I hated it, had given me an exceptional orientation to what I was now going through—that I didn’t have stress and confusion on the process, because I’d studied it in the abstract.

The irony is not lost on me.

 

 

paperwork

The portion of Julianna’s educational paperwork we have actually kept over the years. This is probably about half of it. We print on the back sides of a lot of the rest.

We had Julianna’s IEP meeting on Friday. The process begins with a summary of “present level,” which comes home in advance. I’ll be honest: usually I don’t really read it very carefully. This time, however, we were coming in with some strong opinions and so I took the time to really process those four pages of dense “special-ed-ese.” But I couldn’t help laughing at this paragraph:

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Ah yes, my daughter is 4 for 4 when it’s about food. That’s about right. Chocolate, vanilla, and rainbow. Furniture. Yup.

And this one:

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“an answer that is unrelated to the passage and of high interest to her, for example, Star Spangled Banner, swimming, and choir!” Oh yes, these people DEFINITELY know my daughter!

The great and ever-ambiguous “They” say you should never go to an IEP meeting alone, that you should always have someone in your corner, someone outside the family who knows you and what you want for your child. I’ve never done that, because I’ve always felt like we’re all on the same team. This time, though, Christian and I set aside the time to attend together, which isn’t normally the case. I sent an email ahead saying, “Listen, we have a lot to talk about, so can we just skim over that part where you tell me my daughter is kind and loving and enthusiastic and gets along with everyone? 🙂 ”

There was a person there this year from district administration, which was new, but I decided it probably wasn’t worth asking why when we were already pressed for time. There’s the part of the meeting where they address parents’ concerns, and I was like, “Oh, hang on, you don’t have nearly all our concerns yet.” 🙂 We had to talk about the looming onset of puberty. The fact that her STAR reading scores were completely flat the entire last school year, and that because it wasn’t in the plan, they weren’t allowed to spend time working on reading comprehension during summer school. The fact that she’s getting to the age where she notices her brothers have play dates and friends over, and she doesn’t get invited to parties or for play dates even though the kids are really good with her at school and everybody loves her, and the fact that she’s virtually incapable of having a truly interactive conversation with her peers that would facilitate those friendships.

It was a longer meeting than usual, and all our history as parents rode piggyback on the moment when, late in the meeting, Julianna’s sped coordinator said, “Now, I don’t want you to freak out when you see the minutes…” I had to chuckle: they knew us well, with our adamant and repeated insistence over the years that she be included in the regular classroom AS MUCH AS POSSIBLE for AS LONG AS POSSIBLE. They removed some physical therapy minutes for the coming year, but the addition of a whole lot of reading comprehension minutes means that her time in the regular classroom is dropping from over 70% to just about 60%.

And when the meeting ended—after an hour and a half—and the teachers hurried to get back to their neglected classes, the district representative finally explained her presence. She’s the one in charge of determining placement for kids when they enter middle school. As in, which school and what kind of classroom (i.e. self-contained).

Friday was the first time we had to face the reality not only that she might be less included in the near future, but that in the middle-future she might not be able to be included at all.

It’s a bittersweet moment, but we knew it couldn’t last forever. Her classmates are doing multiplication, and she’s still doing subtraction under 10 (and not well). Her classmates can answer questions like, “Why do you think Character A did Action B?” while she’s still struggling to answer, “WHAT did Character A do?” The gap is widening. When kids start splitting into advanced math and regular math and remedial math, how can you expect inclusion for your kid who’s still doing primary math?

It’s beyond my comprehension, this whole issue of how her mind works. I picked her up early last week in order to facilitate the afternoon madness, and so she was with me for pickup at the Catholic school. She’s only been through that pickup line a handful of times, because she gets out later than they do so she only comes if she’s sick or they’re off school. And yet she kept insisting things like, “THAT is where Nicholas is,” and “I___, you are coming with US!” (Insistently enough, I might add, that not only I___ but his teachers asked me whether it was true, rather than going on the basis of what they know! Ha!) Everything she said was true…last year. It boggles my mind that her spatial sense is so strong when so many other things aren’t just difficult, but simply don’t exist.

Sleeping Beauties

Random funny picture of sleeping kids on the way home from the step-up walk yesterday. Yes, we’re missing one. He had Cub Scouts.

Well, I’m reaching epic proportions and I haven’t had breakfast yet, so I will leave off there for today and hope that this glimpse of special needs life is illuminating.

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.