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:

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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:

Study details

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.

The Orthopedic Surgeon Who Rocked My World (or: The Saga That Isn’t)

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bubblesYou all remember, I’m sure, the saga of the orthotics. I’ve been talking about it periodically for years, both here and on Facebook.

After Julianna broke her second brace in January, the orthotist sent us back to the PT.

The PT told me she really wasn’t sure what to say except she’d like to see an X ray of Julianna’s bone structure so we have a baseline and know for real what we’re dealing with here. We know she walks with all her weight on the navicular bone instead of the heel, but what’s going on inside?

So I called the pediatric orthopedic surgeon, and on Friday, I took Julianna out of school yet again to go see him.

Basically, he rocked my world.

Her feet are not going to deteriorate.

Her feet are never going to get “fixed” no matter how what kind of orthotics we put her in. These are her feet. They will always be her feet. It’s okay. Don’t freak out about it.

Her hips and her knees are fairly normal, it’s really just the feet, and the feet are not going to get worse. They are what they are.

Unless she’s in pain, there’s no reason to consider surgical correction (not that I went in expecting surgery).

Unless it significantly improves her gait, there’s really not even a reason to have her wear orthotics.

We do think the orthotics improve her gait, so we haven’t taken her out of them. But I cannot tell you how freeing this news is. We don’t need to fight the huge fight to keep her in them 90% of her waking hours, with the knee-high socks and the question of which pants will fit over or under them and oh Lordy getting those suckers INTO the shoes! (You have no idea. Seriously. It gets my heart rate up, muscling her into them some days.)

We can back off to ankle-high orthotics, if we decide to do so.

We can buy a pair of premade flat inserts that will allow her to wear boots and normal tennis shoes.

We can even let her go without them altogether so she can wear sandals and sparkly shoes with bows on them.

We no longer have to worry about what to get her for birthday and Christmas, because pretty shoes will make her soooooo happy.

So maybe the lesson in all this is the same one I apply whenever I am fighting the same sentence or story element for half an hour: if you’re not making progress, there’s a good chance you’re trying to force something that isn’t supposed to be there at all–trying to solve a problem that doesn’t exist.

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.

The Minor Frustrations Involved In Raising My Chromosomally-Gifted Girl

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julianna-120When the phone rang during my oh-so-precious work time the other day, I almost decided to ignore it without even checking the caller ID. But there’s always the chance it’s somebody’s school. Which in this case, it was–Julianna’s.

It turned out there had been a minor altercation on the bus. Julianna kept touching a boy’s backpack, even after he told her to stop, and eventually some ugly things were said…involving the word “ugly,” for one…and Julianna’s feelings were hurt.

Listening to this story, I found myself torn between rolling my eyes–because this sounded exactly like a conversation that would go down in my own house–being irritated with Julianna for persisting in annoying behavior despite being told appropriately to cease and desist…and wanting to laugh.

I told the school counselor, “See, here’s the thing. It doesn’t sound like it was entirely unprovoked. I mean, I’m Julianna’s mom and I can’t tell when she really doesn’t get it, as opposed to when she’s pretending not to get it.”

She truly is a darling child, but it’s far too easy to let things slide, because with four of them, it’s hard to do it all. It seems more efficient to focus on the ones you know “get it.” We have a weekly rotation of chores, and whenever it’s Julianna’s turn to do…well, anything, but particularly sweep or mop the kitchen, I just groan, because it’s such a chore for me to make sure she does it even remotely right. And usually I’m trying to make dinner or clean or fold laundry or, rarely, write (I have to be pretty desperate, like riding a deadline, to try to write while supervising chores), and I think, Oh, we’ll get it done later, after… and it doesn’t happen at all.

bubblesIt’s the same thing when I say, “Julianna, put away these two books.” Or “Julianna, put THAT bag on the bathroom counter and THAT strap on my bed.” Or just “Julianna, go get your pajamas on.” I’m running around trying to get household things done, and she simply ignores me.

She’s learned this about me: I’m frequently juggling multiple jobs, and she can slide by without complying because I’m distracted.

Whether she knows she’s being dishonest or not is an entirely different question, and one that gives me fits. Is it a discipline issue, or not?

Then there are the orthotics. Those who follow me on Facebook know she has recently broken yet another uber-expensive brace. Fortunately, they’re covered, but I’m starting to feel very bad for the orthotist and her staff. The orthotist’s best theory is that Julianna’s heel cord is super-tight and, because the braces prevent that tightness from expressing itself, she’s putting exceptional pressure on them. So now we have two to three more orthotist appointments and regular PT to work into the schedule again.

And finally, there are the academics. Her reading assessment score went down for the first time recently. Given that reading has always been her academic strength, this was a tough thing to see. Her teachers said it was because of difficulty in comprehension–the ability to answer questions about what she had read. And the solution is for us to just practice with her more. But this means her homework, which has been independent all year, is no longer. Now I have to read with her and stop her to ask questions every page.

I’ll spare you talking about math.

Life cycles through times when things seem very smooth and times when it seems harder. And of course, usually some things are clicking along nicely while others seem very high-maintenance. I find myself second-guessing our family planning choices lately, now that the kids are all older and I really see how much more I “should” be giving to Julianna. Perhaps we should have left more space before the third child. Or cut it at three. Of course, I can’t imagine my family any way other than it is–raucous, superhero-filled, overwhelmed by togetherness and richness–but I can’t help wondering if Julianna, at least, would be better served if we were a smaller family in which her parents spent more time with intervention.

And then I shake my head and remember that having three brothers will only be good for her in adulthood, and that no matter how much intervention we did she’d still never make valedictorian and start designing rocket ships or doing brain surgery, so why am I stressing the levels of delay? Let her be who she is and let us be who we are and let us together be who we were called to be.

In Which I See My Daughter Changing

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bubbles

She couldn’t do this even six months ago. I’d given up hope of her ever learning.

Julianna has been changing lately. It started a year or so ago, when we realized she had lost that wispy, delicate feel. She’s still tiny and I can still pick her up and carry her, but it’s no longer easy. She feels solid now, rather than fragile, her physical frame finally catching up with her indomitable spirit.

But the change is more than physical. This school year, she can participate in table discussions about what she did at school today. For the first time, we can trust her to remember and be able to tell us what special they had and a little bit about what they did in it. We’re no longer hearing about fire drills every night, whether they had one or not. She’s beginning to develop a more complex interaction with the world, and it shows in what she’s able to process in her school work. She can get on the computer now and navigate independently…at least, enough to get to Sofia the First.

She’s still very far behind, of course. Even in reading, her classmates have finally overtaken her, because her ability to process and retell what she’s reading still lags far behind her ability to decode words—which, truthfully, has always been a little astonishing. And her teachers (bless them!) set a goal of her doing her homework independently, which means when she gets on her math app she is working on the kindergarten level. She’s a little over halfway through it. And she’s in the third grade.

All the cognitive changes were gratifying…or perhaps I should say satisfying…until I realized her deviousness has taken a flying leap to match. Remember how, a year ago, when we were talking about going to confession, we couldn’t come up with anything she needed to confess? Because she didn’t really sin?

We don’t have that problem anymore.

She’s selectively deaf. She is not above telling a blatant falsehood in order to get what she wants, and she is very good at recognizing how to play a busy mom. To wit: last week we were sitting at piano lessons. Tuesdays are not “movie days” in our house, but she does her homework on the iPad. I was very specific: “ST Math and MyOn only. Do you understand?” Yes, she understood. She sat on the other couch working, while I worked on my computer and listened to the boys’ lessons. My mother’s instinct started blinking when she got quiet, got up and headed for the stairwell…and closed the door. It took a minute or two for my conscious brain to catch up. I realized she had gone out into the stairwell to watch Netflix. She figured I was too preoccupied to notice.

Devious, I tell you. We have had to have conversations about dishonesty and disobedience lately.

dental-health

Some things, of course, never change. I can just imagine how this went. I have never told dentist stories on the blog, but virtually everyone who knows me in real life has heard about the drama associated with those visits.

Her hold on her fan club is less secure, too. We still have those moments—like the day we went for parent-teacher conference, and Julianna was crying, “Oh, hi, girl!” to a little kindergartener—maybe first grader—who was waiting in the hallway. “Wha-wha-wha—whass your name? My name—is—Julianna!” (It comes out Dzuuy—ANNA, which causes almost everyone to repeat, “Anna?”). This girl got a strange little smile on her face. “I know who you are,” she said.

Yup, that’s my girl.

But kids are starting to be more cognizant of her differences and, if not judgmental, at least less tolerant of them. I noticed it first among the kids at church and even the extended family—a look on the face, a stiffness in accepting hugs, and so on. And just as I began shaking my head at the fact that the Catholic kids were being less Christlike than the public school kids, I got a contact from school asking us to come and talk to the class about Down syndrome, because a handful of kids are starting to say…well, I don’t know exactly what, because it was left intentionally vague. And that’s okay. Better not to know.

So, as I’ve said before, things, they are a-changing. All change brings with it good and bad. We process, we adjust, we reset, and we go on.

Such is the life of Julianna, a little under two months shy of hitting her double digits.

My Life With Down Syndrome

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My life as a parent of a child with Down syndrome involves…

1. Hilarious, irrational leaps. Take this, the opinion paper she wrote for school this week.

monkey-bars

“I like the monkey bars because I fall down and I got hurt and my heel get big” ….um…I’m not sure I know what that last line actually says. But hey. There’s a period at the end and spaces between the words. That’s a very big deal. ***Note***: a helpful commenter says, “My heel got bloody.” Which, in case anyone is wondering…it didn’t. Hence, “irrational leaps of logic.”

2. A compartmentalization of things that other kids do in an integrated way. For instance: writing. In elementary school, writing is practiced in tandem with things like opinion papers and spelling. But in talking to Julianna’s teacher at her parent-teacher conference, I realized that when they really need to test her knowledge, the adults act as her scribe, because—as you saw above—writing for this nine-year-old girl is a challenge all its own.

3. A certain difficulty in pinning down “age-appropriate.” When Alex was her age, he was treated much differently. Actually, her 7-year-old brother has more responsibility and expectations placed upon him than she does at age nine. I’m constantly trying to discern what’s appropriate to ask of her and what is the appropriate way to treat her. She doesn’t understand as much—but I often suspect that she understands more than she wants us to think she does. The thing about having a high EQ and a low IQ is that you know how to manipulate without even realizing you are doing it.

For instance: is it age appropriate to carry around a 9 year old, just because you still can?

For instance: is it age appropriate to carry around a 9 year old, just because you still can?

4. A bigger difficulty in pinning down “socially appropriate.” Julianna has a gift for love, and many, many people respond to her with joy. She can brighten people’s days. We like to give her as much freedom as we can, because she is such a great ambassador for Down syndrome. She’s high functioning and cute and enthusiastic about, well, everything.

But it’s not universal. She lights up whenever she sees babies or girls her size, and she wants to be friends. But not all mamas are okay with random girls coming over and loving on their babies. And not all little girls want to be attached to by a child with a disability. Not long ago I witnessed a girl close to her own age—someone who knows her well—react to having to stand beside Julianna and hold her hand with the classic “Ugh, I don’t LIKE her” look that all of us seem to know instinctively. I wanted to cry.

5. Having to keep a close eye on her. As hard as it is for her to get around, and as many $4500 inserts and 7-and-counting orthotist appointments as it takes to get her mobile, she can be freakishly easy to misplace! This past weekend, for instance, we went to a display of gingerbread houses, and when it was time to go, I had a lot of trouble separating her from the “friend” she had attached herself to. I did that before rounding up the boys, both because I knew it would take some time, and I didn’t need Michael Mayhem running around while I was doing so. So once I had Julianna, we went to get the boys. But Nicholas was stubbornly insisting he had to finish coloring this one craft. And by the time I got him convinced that it was time to go—even though it took only about 2 minutes—Julianna was gone. I did a quick sweep of the room and then went out in the hotel lobby and asked the staff if they’d seen her. Because she’s kind of distinctive, you know. Nobody had seen her.

Pretty soon we had four staff members searching the hotel bathrooms and the larger premises, while I went around the displays again in earnest. And then, having eliminated the indoors, we headed outside, where we found a staff member coming back with Julianna—who, knowing it was time to go—had simply gone by herself out to the van!

6. Hearing a lot about fire drills. Drills of any kind, actually. She’s rather obsessed with them, in fact. We’re not sure if it’s fear of the noise, or just one of those things.

7. A very streamlined view of life. She loves music, books, babies, and people. And Sofia the First. And she’s starting to get computer literate enough that I keep coming to the computer and finding the search “Swofia hte frist,” with the distinctive purple-gowned little girl.screen-shot-sofia

That’s a sliver of what my life is like with Down syndrome. Are there other DS parents who’d like to share what your “slivers” look like?