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.

 

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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.

The Reason That Dream Was So Scary

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Photo by anjan58, via Flickr

I’ll blame it on watching “Logan” late at night. I had this vivid dream in which we were at my parents’ church and in the middle of the Gospel, I realized Julianna’s bus was due to drop her off at home in five minutes. Only my parents’ church is 35 minutes away, and by the time we got home, we had no idea where she was. Then Christian got a phone call from the bus company saying she was in X subdivision and we had to get there in the next two minutes, and he was trying to tell me where it was so I could go find her.

I spent a couple of half-awake minutes trying to problem-solve it before I realized it was a dream and woke myself up all the way. It was 4:30 a.m. and I was afraid to go back to sleep.

This was the first time in a very long time that I’ve felt a desire to wake my husband and seek comfort after a nightmare. Usually I can dismiss the emotional response the moment I wake up because the situation is so ridiculous.

The problem with this one was, it could actually happen.

For seven years, I’ve structured my life around meeting Julianna when she gets home on the bus. For six of them it wasn’t optional: the sped busses will not drop off a child without a responsible adult on hand. They make two attempts to deliver a child and then they take them to the police station. This is laid out up front in the paperwork.

But sped busses are expensive, and a year ago, the school asked us if we were ready to let Julianna ride the reg-ed bus, with an accommodation written into her IEP that she would still get door to door service.

It’s the walk to and from the bus stop at the end of our street that had been my hangup this whole time; otherwise, I really wanted her included in this way as she is in the classroom. So we did it, and it’s been a positive experience, but no longer is there a requirement that the drivers deliver the child into the hands of a responsible adult. At least, I don’t think so.

So for the past year, I’ve made sure I’m there when Julianna comes home.

Until this summer, when all three of the younger kids rode together, and for that reason, I didn’t have to, because she was in company with brothers who would be sure she’d get inside.

Come August, she’ll be riding solo again. And this morning, lying awake with anxiety pouring through my veins, I realized how lucky I’ve gotten that nothing has ever unexpectedly prevented me from meeting the bus—car accident, appointment running late, last minute emergency with another kid—my author’s brain is concocting all kinds of zero-fault premises.

The thing is, Julianna cannot get into the house, and I have no idea what she might do if she found herself locked out.

But giving her a key would be useless, because our door has one of those push-in-and-turn locks that even adults can’t get open. Our next door neighbor couldn’t get in to water the tree for us one Christmas; I’ve lived here ten years and I still haven’t figured out the trick. I just wiggle and wiggle until I hit the magic combination. And the garage door code, aside from being far over her head, is not well made. You have to push the buttons so hard, she would never make it work, even if she could remember the combination. Or we could get her a garage door opener, but what if the power is out the one day I get caught away from home?

“I want to replace the front door lock,” I told Christian the instant he woke up this morning.

He said, “Just do the deadbolt and not the regular lock, and then she can use a key. The deadbolt works fine.”

I said, “Look, if I know I’m going to be gone I can do that. But if I know I’m going to be gone, I can call the neighbors to meet her. The problem is going to come when something prevents me from getting home on time. And I always lock that door.”

So—a new lock, and a key. But the truth is, I’m terrified of handing Julianna a key and saying “if I’m not here, let yourself into the house.” This is the girl who forgets (or chooses not to remember) that I told her to put away her shoes AND her dirty underwear. Who, when she does remember, is just as likely to deal with dirty underwear by sticking it back in the drawer as she is to put it in the laundry basket.

The girl for whom I never know how much she actually doesn’t understand, and how much she’s CHOOSING not to understand. I’m not even sure she knows the difference. She’s a mystery to me.

The girl who, after being shown the pulled weeds lying on the ground to put in the wheelbarrow, instead pulled up my lantana.

That dream, seemingly innocuous as nightmares go, is a reminder to me that parenting Julianna will always be fundamentally different from parenting my other children. And that is why it was so scary.

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Photo by evereverse, via Flickr

The Charm and Challenge of Raising Julianna

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In bullet points, in no particular order:

Every time we introduce Julianna to a new teacher, be that classroom or for swim lessons, we have to begin with these words: “She likes to pretend she’s more helpless than she is. You have to be firm with her.”

The truth is, she manipulates without even realizing she’s doing it. She recognizes people’s (read that: authority figures’) weaknesses and exploits them without even knowing it. This is the reason for the above.

She doesn’t have friends. Everyone knows her and everyone likes her, and everybody’s excited to see her when we run into them in public–but nobody invites her over (or to birthday parties), and our attempts to reach out have been unsuccessful. I think this bothers us more than it bothers her, but I don’t know for how much longer that will be true.

She will go anywhere for any length of time if there’s a baby there.

Babies love her. Little kids are 50-50. Older kids are gentle with her. Adults absolutely adore her. But kids her own age…it takes a special kid to be willing to hang with her. This is not so much true at school, where they’re all very good with her, but again, she doesn’t get invited to anybody’s house.

Her reading assessments this year were completely flat. As in, she didn’t advance in reading level one single point. She can read the words out of a middle grade novel, but the assessment diagnostic recommends she be given preschool-level materials in order to comprehend. Basically this means she reads a lot of “5-minute stories” type of books.

It is hard work to talk to her. You have to be all in mentally, because she’s really hard to understand. This is probably one reason why she keeps telling you the same things over and over for years. Her pet topics are fire drills, horseback, the iPad, Sofia the First, Elsa blasting Anna’s heart, thunderstorms, and how long until the pool opens.

She doesn’t remember (or at least, she shows no evidence of remembering) anything you tell her about disruptions to the usual schedule. For example, we had the same conversation about how we canceled choir practice this week twice on Sunday, twice on Monday, and once today (and counting). She just keeps saying, “But we have choir practice on Wednesday!”

She’s incredibly spatially oriented. Whether it’s landmarks or what, I don’t know, but if we’re headed to one area of town she’ll list one or more other places we routinely (or used to routinely, or sometimes never went routinely at all) went that are in the same area.

She cannot stay angry. She’s actually, truly incapable of it.

She has my hair: so thick, it’s like two or three people’s hair on one head.

She does not have my hair: her hair is straight instead of curly, and exceptionally fine. It will.not.stay in ANY clip, rubber band, or headband I’ve ever tried. Hence:

It ain’t because I don’t try, folks. That hair just won’t stay in ANYTHING.

I’ve said for years that toilet training happens when parents decide to prioritize it; it usually has little to nothing to do with “readiness,” except parental readiness. I’ve been thinking about this lately because Julianna can’t brush her hair, make her bed, brush her teeth, or do self-care by herself. Or more accurately, she can, but she will do a half-@$$ job at it. I’ve been recognizing that what I say about toilet training also applies in this situation: I have not decided it’s important enough to move to the top of my priority list.

She thinks she’s sooooo funny. (This is a trait that runs in the Basi family. In case you were curious.)

She will walk up to a retired thoroughbred racehorse and hug its neck, but if she sees a dog, no matter what size, she screams and runs away. And she gets extremely put out because the rest of the world does not have the memo that she does not like dogs. Or at least, because they’ve chosen to bring dogs into her general vicinity of the world, i.e. her town.

She can watch a movie once and recite almost the entire thing the next time.

She is a food scavenger. Whenever she clears the table, she tries to scrape up and eat the leftover broccoli or sauce left on the plates.

The flip side is that she’s also pretty easy to manipulate. “Can I have a kiss?” I will ask, and she will say, “NO!” But if I give her puppy dog eyes, she will giggle and say, “Oh, all right, I kiss you!”

And then there’s this, taken from within the choir by one of our sopranos last Sunday:

Photo Friday: Sunny Oak Through The Eyes of a Five-Year-Old

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Michael had the iPad last night at Julianna’s last therapeutic horseback riding lesson of the spring session. Enjoy his photos, and a couple videos at the end!

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Meet Timothy the donkey. Whom Michael called a goat all night.

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I never noticed that I put the stickers on my computer upside down. Face palm.

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Revise, revise, revise until that novel shines…

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Julianna gives Richard Horse a treat.

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I did not think I would be able to share any of the videos Michael took of Julianna riding, because I don’t have permission to show the other kids. But do you know that stinker is just the right height to take a video that shows the legs but not the faces of the other kids? Who knew?

But this one is the crown jewel video of the evening. I’ve always wanted to get Michael’s giggle on video, before he outgrows it.

My Alternative Spring Break

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StudyYou know those trips organized by campus ministries every year, where college kids go to build houses in Appalachia or Central America? I never did one of those. I was way too timid (shocking, I know) and way too comfortable in my own ordinary. Those kinds of missed opportunities are the only real regrets I have about my life.

These days, Spring Break is usually a week I simultaneously try to a) pretend isn’t coming and b) plan to fill with activities so my kids don’t destroy 1) my house or 2) my sanity and their own before it’s over. This year was particularly worse than usual because A) my husband was out of town for the first 4 days of it and B) IT RAINED ALMOST THE ENTIRE FREAKING WEEK.

Wild Hair

Whatcha gonna do? (as my grandmother-in-law used to say)

Of course, I didn’t know point B when I first heard that the University of Illinois was doing a study on how children with Down syndrome learn to communicate. I did, however, know that we had tickets to see The Illusionists in St. Louis at the end of the week, courtesy of Santa (wink-wink). I suggested to Christian that we could go to Champaign-Urbana and participate in the study and visit his brother and sister-in-law there and do some travel writing visits and the show in St. Louis on the way home.

Computer Screens

Thus it was that last Thursday afternoon, Julianna and I spent an extremely cool, rainy day in adjacent rooms on the U of I campus, doing our tiny part to aid the future of the Down syndrome community. They put me in a room next door, where I could watch on a computer monitor while I filled out six, yes, six, questionnaires about our family, Julianna, and communication. (The height of irony: the woman who complains about paperwork every single time volunteers to do a whole stack of it.)

They started out by asking Julianna to complete some tasks without any verbal cues at all—only by silent modeling. Then they moved on to patterns and recognition of facial expressions and all kinds of things. Some of it I missed, because I had my own tasks to complete once my paperwork was finished. I’m not entirely sure how this fits into the big picture—we can only assume they wanted to compare the abilities and strategies of typically-developing parents with those of their developmentally disabled children.

It was a visual test, mostly. They started out with visual analogies: a picture of one tree beside a picture of three trees. Then a picture of a single flower and a blank, and I had to point to the picture below that showed a bunch of flowers. I settled in for an enjoyable ride. Until they switched to patterns, and then my analytical brain kicked in, thinking, oooh, a nice spatial challenge.

But folks, those things got HARD. For a while, I tried to do all the thinking in my head, but it got to the point where I said, “Um, I’m sorry, but you’re going to have to let me talk this through.”

This was one of the last ones:

Puzzle

When I saw this, I admit, I whimpered a little in my heart and considered pointing to a random image, because saying “I have no idea” was not an acceptable answer. Eventually I narrowed it down to two and gave it my best guess. My brother-in-law, that night, paused in the act of scrubbing oysters and spent thirty seconds staring at the puzzle, talking through it, and pointed to the right answer. I went, Oh! Now I get it!

(Alex and I did each eat a raw oyster that night. In case you’re wondering. Another first.)

After the puzzles, I had to choose the image on the page that illustrated the word or phrase the examiner read to me. And then it was concept riddles, for example: something you see through, has a sill, and is put in a wall. Most of them were not much more difficult than that, but a couple of them tripped me up.

My brain was completely shot by the time we were done, but I had one more task: take a picture book without any words at all and read it to Julianna on camera.

I can only imagine Julianna’s was even more exhausted than I was, by the time it was over with, but it was a good experience. I’m looking forward to seeing what comes of it. They’ll be collecting data for several more months, so if there are any readers interested in giving this a try, here’s one more image to point you in the right direction:

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Oh yes, incidentally–The Illusionists? FABULOUS. And the Fox Theatre in St. Louis? Wow. And not just because of the architecture. That was the most helpful, courteous theater staff I’ve ever encountered.