Michael Mayhem Graduates Preschool

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Michael, with his toy guitar: “This next song is called “Starlight Can Never Destroy A Death Star So I will Use My Laser.”

I went to his end-of-year celebration at his preschool yesterday, which consisted mostly of him attacking me at frequent intervals with flying leaps and fierce hugs interspersed with little girls coming around to take pictures with him.

It floors me to see how advanced academically he is. He is actually writing messages to us–all caps, no lower case, and asking us how to spell words–but writing nonetheless. Julianna does this app on the iPad for homework. It’s called ST Math. It’s graphic math, with no instructions of any kind, which has on more than one occasion made my head want to explode, but apparently the kids do pretty well with it. She’s doing the first grade curriculum and as we were trying to show her grandparents how this worked on Mother’s Day, Michael watched upside down and then started doing it for her. I had to get pretty firm with him to back off.

In part, it floors me because he’s in a special ed preschool, one where the primary focus of the instruction is the kids with developmental disabilities. We enrolled him as a “peer model” through the school district when he was three to try to develop sensitivity and awareness toward kids with disabilities–because of all our children, only Alex, who witnessed and participated in her early childhood therapies, really has an inherent awareness of and appropriate interaction with her. To her younger brothers, she’s just their sister. They don’t tolerate her desire for hugs, and their power struggles over the iPad and books and so on look like every other sibling struggle. They don’t give her one inch.

There’s great value in having that relationship–Julianna is always trying to get away with things based on her disability, whether she’s doing it consciously or instinctively–but I still wanted Michael to at least be capable of making a distinction.

When it came time to move him to a traditional preschool for his preK year, to make sure he got the needed academic preparation, we found ourselves waffling. He seemed comfortable, and the school was right here in the neighborhood. Often, we bike to and from. The kindergarten teachers at the Catholic school said, “Ah, don’t worry about it. He’ll be fine.” And so we left him in place for a second year.

His teachers at Early Childhood Special Ed have told me repeatedly how seriously he takes his job as peer model, but I always thought that was just teachers being nurturers; I didn’t take it that seriously until one day, Michael and I went out with my friend and her son, who is a couple years younger than Michael, after Jazzercise. The boys jumped around, climbing on and under things and generally being normal little boys while we talked and tried to keep their exuberance (and potential for damage) contained to one corner of the cafe. When it was time to go, Michael’s little friend did not want to go. It was like a switch flipped in Michael. His tone of voice gentled, he helped his friend put his coat on, he held his hand and led him out the door. My jaw hit the floor.

It will be interesting to see how the experience of being a peer model shapes his future character. In the meantime I highly recommend it for anyone looking for an inexpensive and extremely enriching option for preschool. Because clearly, it didn’t harm his academic potential at all.

In any case, such is the world of my littlest guy as the school year closes. I’m having so much fun with him.

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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.

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?

Stained Glass, A Strong-Willed Breakthrough, and Learning to ride a bike in a week (theoretically)

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It’s been a pretty intense week, with Julianna in iCanBike camp in a nearby town. I’ve had to pull her and Nicholas from school early every day so we could make the half-hour drive to the camp. They begin with this gizmo, which is sort of barrel-shaped, so it’s narrower and less stable than training wheels, but follows the same principle.Arm and Bike 010

Bike Gizmo

As you can see, she does fine with this–her side walker doesn’t even have to hold the pole. But she’s slow. Very, very slow. She’s spent most of the week on this bike.

Step two is a special tandem bike:

Tandem

She’s a stinker. Forced to pedal faster, she mostly put her feet down on the ground, until her instructor finally realized you have to be very firm with her, lest she run right over you. I gave them twenty minutes the first day to try to learn this on their own, and then I intervened, because this is too intense a week for us to waste the time coddling her.

Step three is a real bike, with the pole on the back for support:

Full Deal

 

They had us buy a bike for her, which will be fitted out with one of these poles today. Many of the kids graduated yesterday to riding outside on the parking lot; these kids (and young adults, in some cases) will probably actually achieve the goal of bike independence in one week. Julianna? Not so much. But they don’t want us putting training wheels on her new bike; we are just going to have to run with her whenever she rides, until she either learns or another similar camp is offered. I know: as if we need any more to do…

Speaking of more to do… Nicholas and I butt heads every so often about the horrific state of his drawers and his closet. I lose my cool really quickly trying to teach him over and over again how to hang clothes on hangars and fold the ones that go in the drawers. I takes so darned long, I end up doing half of it myself because I can’t stand the waste of time. Last night, I had a breakthrough. I brought my flute upstairs and I practiced for over an hour while he rehung every piece of clothing in his closet, and dealt with this, the contents of his drawers:

Clothes

(not one of which came out of the drawer folded when he dumped them on the floor for sorting, I might add)

We got rid of about half of it. Fewer clothes= easier cleanup. And while he sorted and folded, I spent forty minutes getting comfortable with my newly-repadded flute while playing Moyse Daily Exercises…

Moyse

….and then some Piazzola Tango Etudes.

Piazzola

“Mom, why are you so loud when you warm up?” Nicholas asked.

“I’m loud when I go up high. That’s just the way it is,” I said, “and tonight, you’re going to have to put up with it.”

Over an hour, I practiced last night. And he did the entire job himself, because I had something to keep me busy in the room where I could supervise. And I didn’t come anywhere near losing my temper, because I had something useful to do with my time while he was learning this important lesson in self-care.

This is a huge breakthrough, people. I’m telling you, this is entering my permanent repertoire of parenting solutions.

Finally, a beautiful picture I took from my position as choir director at church on Wednesday night. I love these windows.

Stained Glass

On Julianna, at the end of Grade 2

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J basketball

Julianna’s favorite toy these days. She loves to bounce and catch it with anyone who will play with her. And no, as a matter of fact, I can’t get her hair to stay in ANYTHING. Thanks for asking. 😉

Every so often, I like to share some of Julianna’s school work and progress. I need to be clear: this is not a total picture of Down syndrome. It’s not even a total picture of “what a person with Down syndrome can do in the second grade.” There’s a vast range of ability among people with Trisomy 21, just as there is in the typically-developing population, and it’s quite uneven. Julianna could read before she could talk, where we know of other kids her age who could talk by three but still struggle to decipher words on a page.

Still, with all those caveats, I like to share these because it’s at least a snapshot of one child’s struggles and “adorability.” At the end of second grade, she is nine years old, having repeated first grade, and is included in the regular classroom about 70-75% of the school day. She shares a para with her bestie, and she loves school so much that one of her opinion papers this year was on the topic “why we should have school on the weekends.” Even now, in the last week of the school year, she greets the bus every single morning with a warbling giggle as if it’s the first day of school.

And here are some examples of her recent schoolwork (spelling corrected):

Opinion papers

pigeon

“I think the pigeon should not drive the bus. The first reason is the bus driver (one almost completely unintelligible line, I have no idea what that third from the bottom says except the last word is “dose”, to wit:)  does not have a license. The third reason is” (I guess class ended).

You’ll notice that she struggles with capitalization, punctuation, and spacing between words in addition to comprehensible letters and spelling. The spacing has been their focus at school lately. This is some of her best work, I think. Certainly the homework writing I supervise (read that, sit beside her and watch every pencil stroke) at home is nowhere near this legible.

ant

My personal favorite:

“I think the ant should not be squished. The first reason is he does not want to be squished. The second reason is the ant has a family. The third reason is” (again, interrupted).

(Now come on, tell me every one of you isn’t going “Awwwwwwww!” right about now!)

That gem might be hard to top. But we’ll try. Because after all, she was asked to say what her best “special” is, and she couldn’t decide from one day to the next:

PE

“I think P.E. is the best special. The first reason is because Coach has balloons. The second reason is because we have a parachute. The third reason is because we have a basketball. That is why I think P.E. is the best special.”

Except, au contraire, the next day she had THIS to say:

Media

“I think media is the best special. The first reason is because I like to go on ST Math. The second reason is because (mumble mumble) is fun. The third reason is because I get to wear headphones. That is why I think media is the best special.”

Finally, as an illustration: this is the STAR reading graph we received on Friday. I don’t really understand all these assessments; the point is to see the trend line, which is computer generated from the scattershot of good and not-so-good assessments.

STAR report

You’ll see that sometimes she’ll perform exceptionally well, and then she’ll show an apparent backslide, only to shoot upward again. This has been very typical for Julianna–extreme inconsistency. It happened with her counting, too; they could not get her over a hump where she could consistently count up to a number. One day, she’d count all the way to sixty; the next day she’d skip a couple numbers near the bottom of the chart (10, 11, 12, 16, 17). This went on for more than a year. Reading comprehension is doing the same thing to her. She loves to decode words, but she doesn’t always understand what she’s reading–or, more likely, she doesn’t know how to tell you about it. Hence these numbers, when her teachers say starting grade 3 they want to see kids around 300.

Homework is an extremely intense experience for Julianna. She can’t do it by herself. Not, I won’t let her…she can’t. I have tried to walk away and chop some onions for dinner while she writes down an answer we came up with; when I come back, I find she’s put it on the wrong problem, or she’s spaced out on what she was supposed to write and has written something random and unintelligible.

So far we’re choosing to walk her, step by step, through the same math problems her classmates are doing, even though we know she doesn’t understand what she’s doing, because she still hasn’t made the connection that numbers are a symbol of a reality. It’s entirely an academic exercise to her. This is a pretty common phenomenon among people with DS–at the education conference I attended a couple years ago, the presenter was asked what the solution was, and she said, “Get the school to let them use a calculator as early as possible.” This same woman said her daughter finally learned to count money when, as an adult, she was motivated by a desire to ride the bus to see her new boyfriend. So there you go.

I like to share these snapshots because Down syndrome is viewed with a big air of mystery and vague generalities. What precisely does a mental disability mean for a child’s schooling? This gives you a peek at an answer to that question, at least for one specific individual.

Questions? I’m all ears.

Which Bone Is The Extra Chromosome In?

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J Portraits 088 crop small“Which bone is the extra chromosome in?”

This is the question I was called upon to answer last night. It was 7:43p.m., and my day had been a nonstop madhouse, beginning with an 8:30 a.m. flute rehearsal and culminating in a mad rush from 4:30-8p.m. to get Julianna to and from dance, everyone fed, dishes done, floor swept, haircuts given, forgotten recycle-art project built, and baths taken. (Christian had to take Alex to baseball.) I was shot by the time Nicholas opened his mouth after bath.

Hopefully, he’ll forgive me for laughing at the question.

Christian and I made a conscious decision to start talking about Down syndrome as soon as we could do it without crying. Alex, of course, got the bulk of the intensity, because he was around when it was all fresh and Down syndrome was the only thing on our minds.

Now that Down syndrome has faded into the tapestry of normal life, the topic is more “in the air” than a formal conversation. Sometimes I wonder if Julianna’s younger brothers are really getting the message. On the other hand, it’s a comfortable enough topic in the house that Nicholas feels no inhibitions about asking “which bone is the extra chromosome in?”

We’re pretty active in the local DS community. I am the primary Facebook page person, the primary person who talks to med students (Christian joins me whenever he can, and there are two other women, but I do most of them), the primary point of contact for hospital social workers and Early Childhood sped teachers, and the point person for our bimonthly social hours. My fellow co-coordinators have their own points where they take lead, but these are mine. We’ve been in the newspaper (here, too) and on TV.

I used to worry that Julianna would feel a stigma attached to all this background noise about DS. I know that come adolescence, it could still happen. But at least for now, Julianna is eminently, beautifully comfortable in her own skin and in the superstar status accorded by her extra chromosome. What disability? She’s got a fan club and a retinue of adults at school. She thinks she’s a starlet.

To some extent I think Julianna’s comfort is simply a gift of her nature. But I also think, in part, that it’s because we’ve made sure everything we say about Down syndrome remains emotionally neutral. The word “retarded” does not get used in our house, even in relation to Julianna, to whom it actually applies (and incidentally…..)

We don’t even talk about her “disability.” We simply say everybody has 46 chromosomes and Julianna has an extra one, and because of that it’s harder for her to learn things. Period.

Kids are wonderfully malleable. When you treat something as normal, they view it that way. Or perhaps it’s more accurate to say, when you don’t get all twisted up in your own emotional hangups about people who are “different,” kids are able to accept it as something factual, without a negative connotation.

In any case, it’s only the adults who are uncomfortable with these conversations, and if we as adults can just get over our own biases, the next generation won’t pick them up in the first place.

Speaking of biases…just to make sure you don’t miss the point…