Julianna (a 7QT post)

Picnic, playground, Pinnacles 097___1___

The decision was made at the end of last week: Julianna will remain in public schools. I would like to say we made it, but the truth is that the Catholic school decided they simply couldn’t serve her. I was relieved, because for quite some time I’ve been moving toward the conclusion that she is where she should be, and I was dreading having to make the decision ourselves. Christian, however, was not so sanguine.

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As much as anything I think our disappointment stems from the lack that the Catholic school kids suffer by not having her in their midst. Ugh, I sound like one of those insufferable moms who think their kid’s very existence enriches the universe around them, right? Well, I can only plead guilty, but I do have a reason.

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I’ve said before how not-diverse my childhood was, and how difficult that made it for me to translate lessons of equality before God into action. My mom says I have a tendency toward “scrupulosity.” In this case, that means I’ve spent my entire life worrying about whether I’m treating people the same regardless of skin color–or, I discovered later, disability. Knowing something in theory is not the same as having the chance to put it into practice when the lessons are being formed. For this reason I say that kids need to be around my daughter at least as much as she needs to be around them. Other kids need that interaction.

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Our local Catholic school isn’t quite as homogenous as the one I grew up in, but it’s close enough. And last fall, we had a rather disheartening experience at the cub scout family campout, which is entirely Catholic kids. Exhibit A: during Mass out on the lawn, Julianna was reciting prayers loudly and not clearly, as she always does. She got several of those “looks” from the kids. You know, the “you are so weird, what is wrong with you?” looks. Afterward, there were a few little girls running around hand in hand. They were so cute, and Julianna went running over to join them. They, too, gave her The Look and gave her the cold shoulder.

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Understand that nothing like that has ever happened around the public school kids. The only explanation that makes any sense to me is exposure to diversity, or lack thereof.

Take a bow, girly girl

Take a bow, girly girl

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I read something recently that said that although people with Down syndrome have a low intelligence quotient (Julianna’s IQ was measured at 60), they have an emotional quotient that’s much, much higher. That rings true; Julianna is enormously empathetic, sensitive to mood, and seems to be able to pick out the person in the room who most needs loving. As a society we are so focused on intelligence as the primary value, we’ve failed to recognize the contribution that a high emotional quotient has to offer.

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Although Julianna is reading at “level 2.” Level 4 is considered end of kindergarten. Not too shabby, methinks.

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Yesterday her school had a Mothers Tea. It was a concert followed by cookies and fruit punch. The kids were “warming up” with the music teacher when I arrived and sat down. I was just beyond the music teacher, and Julianna was so fixed on her, she didn’t see me at first. But when she did…well, those of you who have met Julianna know how she reacts to delight. Christian says her entire face expands to make room for the size of that smile. “BAH-EE!” she screamed, drowning out the other sixty kindergarteners. So stinking cute. They were doing songs about mothers, and every time they said the word “mom” during the performance, she pointed with her entire arm at me.

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I will not, however, pretend that she’s an angel. She is not. There is way too much brother-torment and button-pushing and deliberate obtuseness in my girl to justify that label. But I’m shredding the idea of seven quick takes now, and I need to mow the lawn. :) Have a great weekend!

7 quick takes sm1 7 Quick Takes Friday (vol. 216)

Published in: on May 10, 2013 at 5:36 am  Comments (16)  
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Motherhood, Mostly (a 7QT post)

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ThisLittleLight_Beatitudes_CoverI’ve been so busy lately, I just now realized I never shared this! We are running a giveaway of This Little Light of Mine on Goodreads. Six copies available, to be “drawn” by Goodreads on May 1st. Click on over and sign up!

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I think every woman–probably everyone–is well aware that the reproductive cycle affects a woman’s Crank-O-Meter. But I always thought it was Phase III, post-ovulation infertility, i.e. PMS, that was the cranky time. But in a recent  column in CCL’s Family Foundations, Dr. Gregory Popcak mentioned that it’s often the transition from Phase I to Phase II–i.e., the time when you’re entering fertility–that you get the most moody. It was like a light went on in my head, because my fuse is wwwwaaaayyy shorter with my kids during that time. (Three guesses why I’m reflecting on THAT this week.)

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Yes, TMI, I know. But you know how the Europeans are always telling us we’re Puritans at heart? It’s like we want sex and sexuality splashed front and center all over everything–as long as we keep it fun and un-threatening (read that shallow, pointless, and without significance beyond the bedroom). Ladies, if our bodies are causing us to have difficulty with patience at a certain point in the cycle, I think it’s important to acknowledge that and offer each other encouragement in overcoming it.

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Michael is why her glasses are falling off her face in this picture. He had them stretched out.

Michael is why her glasses are falling off her face in this picture. He had them stretched out.

To return to the topic of #2. Julianna’s glasses, in combination with Julianna’s cognitive weakness, are making me IN.SANE this week. The worst part is I can’t yell at anyone about it, because the at-fault person isn’t old enough to “get it.” Yes, you guessed it: Michael. Michael likes to go up to Julianna and rip her glasses off her face, then twist, squeeze, throw and/or hide them. It happens every single day, usually several times a day. But he’s like a dog; if you expect him to connect words and/or consequence with his action, it has to happen right then, and I don’t discover it until some time later, when I look up from dinner prep or dishes-doing or whatever and see her sans glasses again. And of course, she has no earthly idea where they are.

Thursday morning I’d had enough. I called her over. “Julianna, when Michael takes your glasses, what do you say?”

“Thank you.”

“No. You say Mommy help. Say ‘Mommy help.’”

“Bah-ee heh.”

You can see all his Mayhem in this picture...

All his potential for Mayhem shines through in this picture…

“When Michael takes your glasses, what do you say?”

“Thank you.”

“No. You say Mommy help. Say….Mommy help.” She said it with me.

“When Michael takes your glasses, what do you say?”

“Thank you.”

We tried this ten times in a row. I kid you not. TEN. Can I say that loud enough? TEN!!!! And STILL she didn’t get it!

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This encounter, which I tried with variations (what do you DO when Michael takes your glasses?) all the way to school, with very little success, got me to thinking about that “okay?” thing. Modern parents are always getting lambasted for finishing instructions with “okay,” because they’re asking permission of their children instead of taking charge. I try to avoid that word, but not because it’s a sign of asking my kids’ permission. No parent says “Okay?” because they’re asking their kid’s permission. What “okay?” is doing is requesting acknowledgment. It’s akin to “Do you understand?” or “Do you hear me?” All morning I wanted to tack on the word “okay?” to those exchanges with Julianna, because I wanted her to acknowledge that she understood. And I didn’t do it, because you know what? SHE DOESN’T UNDERSTAND.

(Update: At dinner that night, when I asked her what to do when Michael took her glasses, she got it right! Of course, she still didn’t apply the knowledge the next three times Michael yanked her glasses off her face, but…that’s progress, right?)

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Alex 1st Communion 041Oh yes, in case you don’t follow all the time, our household had its first First Communion last Sunday. And this reminds me of a cute thing I never shared. They have an evening of “centers” to review all the theological and Scriptural concepts several weeks before Easter, but the highlight for the kids is getting to try an unconsecrated host and wine. Alex’s reaction to the host was a tip of the head one direction and the other, raised eyebrows, and this comment: “It kind of tastes like popcorn, only flat and with no flavor.” HA!

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Alex 1st Communion 056And you know you need a Nicholas moment, right? The other day he was trying to tell a little friend (not this one) when Julianna’s birthday was. “It’s Februay–Faybeeway–Febyewrehr–Febeeyayee–what is it again, Mommy?”

7 quick takes sm1 7 Quick Takes Friday (vol. 214)

7″Q”T: Down Syndrome, Cute Conversations, and The Crazy Day

(You all love my descriptive 7QT post titles, right?)

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822230 This Little Light CoverWhat a week! Monday I spent the day at the Cathedral selling books and playing backup singer/pianist/flutist for Danielle Rose. What an amazing lady she is. Tuesday was Nicholas’ 4th birthday, and in between Jazzercise, school pickup, and piano lesson transport, I interviewed Angela Baraquio, Miss America 2001. Another super sweet lady. Wednesday I went to hear my parents speak about their trip to Medjugorje. And then? Then came…dun-dun-dun…THURSDAY.

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Thursday was always going to be nuts, because I hadn’t gotten any of the week’s writing done, but…well, here’s the timeline:

4:45 when Michael woke me up crying for water and I never got back to sleep 5:15: Get up and go to Jazzercise

7:00: arrive home, start bread machine, help kids with breakfast,get Julianna ready for school

7:30: shower

7:50: wolf down a bowl of cereal and round up kids, coats and shoes

8:10: Nicholas and Julianna to school

8:30: arrive home, put Michael down for nap. Writing time commences, interrupted by three days’ backlog of email, including one from a TV reporter requesting an interview for World Down syndrome Awareness Day.

11a.m.: reporter calls back and tells me she’ll be at the house in 20 minutes. Get dolled up and try to contain the carnage in the living room.

11:20: feed Michael while answering questions on camera

12:30: scarf down some “lunch” (i.e. Michael’s rejects)

12:40: go pick up Nicholas from preschool

1:30: sitter arrives, leave for the local Catholic high school, where Christian & I are scheduled to speak to juniors about NFP.

3:30: arrive back home, provide snacks to bottomless pits kids

3:45: Julianna and the TV reporter arrive. More filming commences.

4:15: voice student arrives

4:20: Michael needs a diaper change

4:50: Throw together dinner for the family

6:00: Watch self on TV. (Top of the news cast, baby!)

6:15: Get teeth brushed and jammies on Michael.

6:40: Load the boys in the van and go to Alex’s Cub Scout Pack meeting while Christian runs to Target for the diapers we’ve run out of and then takes Julianna to swim lessons.

8:30: Collapse on the couch in exhaustion

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So: more Down syndrome notes, learned this morning at the presentation we helped coordinate for the doctors at the university hospital:

  • in 1980 the average lifespan for a person with Down syndrome was 25-30. Today it’s 55-60. (Wow!)
  • 60% of siblings of kids with DS go on to pursue “helping” professions: therapists, teachers, doctors, public life, etc.

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And you need another Maestra Julianna video this week, so here you go:

I’m going to start pulling C’s phone out at 8:00 in anticipation of her arrival. This is what she did when she walked in the room after religious ed. We had to stage it again for all of your benefit. :)

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Shortly after, Julianna needed to go to the bathroom. This was our conversation in the bathroom:

“How was church school, honey?”

“Good.”

“What did you talk about?”

“Uh, Dee-Duh.”

“Jesus?”

“Yah!”

“What did you talk about Jesus?”

Silence.

“Did he ride a donkey?”

“Yah!”

“Did they wave palm branches?”

“Doh!”

“No? Did they sing ‘Hosanna!’” (I sang the David Haas refrain.)

“Doh!”

“They didn’t? Yes, they did.”

“Doh! Hah Boh-day!”

(Sigh.) “No, they didn’t sing ‘happy birthday,’ sweetie.”

(Injured tone of voice) “Why?”

“Because they don’t know ‘happy birthday’.”

“Why?”

“Because it hadn’t been written yet.”

“Why?”

“Okay, it’s time to go back to choir practice now.”

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Alex & Michael have started a new game in the van. Brace yourself–this is revolutionary stuff. It’s called “Let’s drop the toy on the floor and make our brother pick it up.” I know. I have the smartest kid In.The.Universe. Because no baby in the history of the world has ever discovered this game before! At least, Michael doesn’t think so! :)

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I think I’ve earned the award for Longest “Quick” Takes in the History of Quick Takes with this post. It’s been a week for meditating on many subjects based on the many things I’ve outlined above, but I can’t do them justice now. Maybe next week. Happy Palm Sunday weekend…and First Weekend of Spring (har har, you’ve all seen the weather forecast, right?)

 7 quick takes sm1 7 Quick Takes Friday (vol. 212)

Published in: on March 22, 2013 at 9:46 am  Comments (1)  

3/21, T21: Why Down syndrome Matters To You

Julianna looking out over the Great LakesThursday, 3/21 is World Down Syndrome Awareness Day. Why? Well, it’s the numbers. Down syndrome is a trisomy, or third copy, of the twenty-first chromosome, so 3/21 is the obvious choice. If you see someone wearing a blue-and-yellow ribbon tomorrow, ask them who their chromosomally-gifted loved one is. Tomorrow we’ll all be doing things in our schools, workplaces and communities to put our loved ones’ need for support and human dignity in front of everyone we meet. And because it’s what I do, I blog. Today, in honor of 3/21, I’m resurrecting a few of the posts I’ve written since Julianna began rocking our world.

Snapshot:

It’s easy to take a snapshot and say that my 13-month-old is functioning at about an 8-month level. It’s much harder to communicate the experience of what those 13 months were like.

Walls:

It reminds me of that line in Beauty and the Beast: “We don’t like what we don’t understand; in fact it scares us.” And why this lack of understanding? Because in America at least, there is a massive double wall barricading “normal” people from “disabled” people.

The Meaning Of Life:

…when people see Julianna, they stop, they turn their shopping carts around, they engage in conversation. They stare at her—not an unkind, rude stare, but the hungry stare of people confronted by something so beautiful that it has to be acknowledged, like a rainbow in the morning. It’s not just that she’s a beautiful child, although she is. I think it’s a natural reaction to the discovery of beauty in a place where the overarching culture, in its focus on Stuff, Sex, and Svelte, has failed to recognize it.

Sorry about the blurry shot. This is what comes of an iPhone in the hands of a 7 year old.

Standing At the Precipice:

A newborn is a newborn is a newborn. A baby with Downs is not born delayed. It starts in exactly the same place as every other newborn. All babies are helpless, all babies do nothing but lie there, sleep and eat and make diapers.

Yay, God!

Julianna has taught me a deeper truth: that praise is not about words at all. It’s about opening yourself up to the moment, delighting in what you experience, and allowing the knowledge of the One Who made it possible to intensify the joy.

Pigeonholed:

Everywhere we go, Down syndrome is the topic of conversation when Julianna is around. Like skin color or relative tallness or shortness, DS is what people see when they look at her. But here’s the trouble. When we classify a  person on his or her skin color, it’s called racism, and as a society we struggle to remove that plank from our eye. But for some reason, that isn’t true of disability.

What To Do About The Elephant In The Room:

Don’t avoid the subject. Just say it directly, without fuss. We are all made up of tiny things called chromosomes, and Julianna has one more than we do. This is called Down syndrome, and it makes her learn things more slowly than you do.

Alex Julianna hugA post for all who call themselves prolife:

Respect for life is so much bigger than abortion. It’s an attitude that should permeate all of life, in all its forms and manifestations. Prolife politicians are very good at being outraged by the systematic termination of “imperfect” children. But if you’re going to ask people to shoulder the responsibility of caring for children with disabilities, you can’t abandon them once the child is born.

Published in: on March 20, 2013 at 7:18 am  Comments (7)  
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All About The Kids (a 7QT post)

Time for some updates on the kids.

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Alex received a “cultivation station” from a white elephant at a Christmas party. What’s that, you ask? Something about growing plants? Well…sort of. It’s about growing…bacteria. I have to admit this whole thing makes me a little queasy, considering the overwhelming number of illnesses we’ve dealt with lately, the number of ANTIbiotics we’ve been chugging.

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Julianna has a new decoration for her room, an idea gleaned from the decorations at the “Fairy Houses and Forts” display we visited last summer at a nearby botanical garden.

Beads

Beads 2

hanging gems

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Oh yes. And Julianna still thinks it’s her birthday (her birthday was over a month ago). Actually, at this point it’s one of her (many) jokes. Basically she thinks she’s the funniest thing since Charlie Chaplin.

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An interlude about Alex and Julianna: we keep information from their schooling in file folders.

File Folders

On the left you see the collected paperwork pertaining to Alex’s preK, Kindergarten, first and second grade. On the right you see Julianna’s preK and Kindergarten. (And we’ve thrown away more than half the paper we’ve been sent.)

Just another glimpse of life with special needs.

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Headless DollNicholas…oh, where do I begin? And if I start, where will I stop? Nicholas will be four in less than two weeks, and we’re deep in birthday cake negotiations. And his language is a stitch and a half. Here’s a sample:

a) He’s on a baby doll kick lately. “My baby has an ear infection. I’m taking her to the doctor. Oh, it’s okay, Jackson. You’re okay.” (Notice her name is Jackson?) “Mommy, my baby is sick.” CLUNK. The head falls off. He looks down at the decapitation and says, “Mommy, my baby is weely sick!”

b) “What are we having for dinner?” (Pork chops.) “But I’m not allergic to pork chops!”

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On the not-so-cute side, there’s a tendency that worries us as it has the hallmarks of budding bullying. He likes to ask Julianna questions he know she’ll say “yes” to, just so he can tell her “no” very forcefully. For instance: I gave him and Alex the beaters from the fruit salad dressing to lick, and Nicholas walked over to Julianna and held his out. “Do you want a beater?” he asked, knowing full well there wasn’t one to give her. This happens 3-4 times a day.

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And Michael. Ah, Michael. We officially dropped the bedtime nursing this week; we are morning-only breastfeeding now. I have mixed feelings about it, but it was one thing we decided to try because he’s been so needy for me (not Daddy or Mommy, just me), and I’ve been at my wits’ end…as evidenced by the blog posts of the last two weeks. He wasn’t really interested in it, anyway; he spent most of his time trying to sit up while attached to the breast and stare at the lights or his siblings or grab the phone from the stand next to us.

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On Monday the doctor discovered that Michael still had an ear infection. He went through a round of amoxicillin in late January, which seemed to work, and then got another one late in February, which they prescribed Augmentin for. We were now a week past the end of that Rx. As the doctor and I got to talking about his impossible crankiness and neediness for the last 8 weeks, we came to the plausible theory that my poor boy has had one continuous ear infection this whole time. We graduated to three consecutive days of antibiotic shots at the doctor’s office.

In some ways I feel guilty for not realizing the problem, but he’s also a) 15 months, and separation anxiety seemed plausible, and b) cutting 4 molars and 2 canines. Since he wasn’t tugging at his ears, and every time we finished an antibiotic course he was better…for a couple of days, it just didn’t occur to me.

All this time I’ve been bewailing the loss of my happy-go-lucky baby, so good-tempered, so smiley and easygoing. I credited the NICU. By the time you’re through that nonsense, all of life must seem like a breeze. Since the first of the year I’ve been thinking I had expended all my karma and I was in for two years of hell. But now that I realize how bad he’s been feeling, for how long, and the fact that he’s been consolable at all, and even laughing…for me…it underscores the original point.

Well, that went from very “quick” takes to…not so quick. Shutting up now…

7 quick takes sm1 7 Quick Takes Friday (vol. 210)

Published in: on March 8, 2013 at 7:35 am  Comments (5)  

Adventures In Speech Production (and other kid-ness)

J Kindergarten from BartkoskiSunday morning, exhausted after weeks of sick kids and bad nights, we decided…gasp!…to sleep in and go to late Mass. So 8:45 a.m found me on the Nordic Track, attempting to multi-task the time as brain-quiet time. I knew better, of course. Julianna stepped lightly into the room in her white-and-purple dress, her boots on the wrong feet, carrying a book, and held it out to me. “Wee boh?”

“Book,” I corrected.

“Bo-koh.”

“When I’m finished exercising. But it’s going to be half an hour.”

She stood and watched me for a minute, then let out a long stream of jibberish I couldn’t follow. But I caught the words “wa bee bah,” which is watch baby signing times, which is code for “I want a video.” The rest, however, completely escaped me.

She kept repeating that “rest,” however, for the next six hours. Clearly she was trying to communicate something, but “Pee-poh Jah-yu-yigh” did not ring any bells. “People?” I kept asking, and she’d shake her head.

In the afternoon Alex and I went out for a while, and when we came home, among the madhouse that met me at the door was Julianna carrying this:

Christian gave me a wry grin. “That’s what she wants for a movie today,” he said, and Julianna said happily, “Pee-poh Jah-yu-yigh!”

Purple Jazzercise.

(Disclaimer 1: this video was a gift.

Disclaimer 2: there is nothing “burlesque” about this DVD except their annoying tendency to say that every body part is “sexy.” Last week while I was snowed in, the kids alternately watched and danced with me to this and my other workout DVD.)

This reminds me of the last time Julianna desperately wanted to communicate something to me. Another stream of unintelligibility she kept repeating for hours as I wracked my brain and came up with nothing. “Yi-yi wah-oh.” Finally she signed “pool,” and I caught it: swimming lessons.

They weren’t sure their IQ tests were quite accurate this year when they did the re-eval, because she can’t talk. Until now, she’s been pretty easy-going and didn’t have a lot of trouble communicating, because her desires were pretty basic. Now, however, she really wants to talk, and does. It’s a good thing, but hoo-boy, it’s a brain stretcher!

Now, on to the “other random kid-ness” I indicated in the title:

Item 1: Apparently from here on out, thunder snow is the norm for mid-Missouri.

Item 2: What with President’s Day, an intestinal virus, and eleven inches of snow, Alex and Nicholas went to school one day last week; Julianna went two. Our street never did get properly cleared, and now we have another several inches dumping on us again…and another snow day.

Item 3: After last week’s lackadaisical attitude toward closures caused havoc on local streets, everyone is gunshy, and the entire city has closed down: busses, schools, universities….doctors’ offices…

Item 4: Which means it is time for Nicholas to wake up crying at 5:30 a.m. after three days of runny nose…because his ear hurts.

You’ve met a character named Murphy, haven’t you?

Published in: on February 26, 2013 at 8:13 am  Comments (2)  
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What I Learned From A Kindergarten SpEd Re-Eval

J birthday 034

Carousel birthday Cake, a la Mommy

About a month ago, Julianna’s school finished her “re-evaluation.” This is required every three years under the IDEA, presumably to ensure that kids who are receiving expensive special ed services still need them.

Julianna entered the mid-kindergarten eval with a diagnosis of “young child with developmental delay,” a dx that does not carry into the elementary/secondary years (for obvious reasons). So, beginning mid-fall and lasting until Christmas or thereabouts, she underwent a battery of assessments for language, behavior, speech, motor, and academic skills. Even an IQ test, about which we were intensely curious. Hearing the number 60 was a bit of a reality check; it’s one thing to recognize that your child is and will always be delayed; it’s another to see it quantified. Somewhere deep inside, you keep hoping your kid will pull out a 69 and almost squeeze into the “normal” range.

In any case, the end result of this re-eval was–wait for it–an IEP meeting in which we went over the report and incorporated the results into a new plan. Ten people in the room, copies for everyone–nauseating amounts of paper, because the god Privacy forbids electronic dissemination. We moved quickly, with many interruptions caused by the three children in the room (one of whom was trying to eat every toy block in sight), so it wasn’t until the formal report came that I sat down to really read and process it in depth.

carousel craft

Apple, straws, peanut butter & animal crackers = a great, edible carousel birthday party craft.

When your child goes off to school, you automatically lose a certain intimacy. No matter what you do, you can never quite pry out of them what their day is like now. Their routines are unremarkable to them, so they don’t see anything to share. You ask “What did you learn in science today?” and you hear: “We didn’t have science.” You know they must have, they just didn’t recognize it as such, but without a beginning point there’s no way to pry the layers back and understand exactly what’s going on in the hours he or she is away from you.

If it’s that hard with a verbal child, imagine the dearth of information when your child doesn’t communicate by speech at all, or at least, only at the most surface level. So this report was really enlightening. It didn’t tell me about the school days or the routines, but every so often a nugget would pop out that I recognized so clearly, I could picture the entire scene:

“It was often unclear whether she was simply repeating the presented words rather than making an attempt to respond to the items.” Check.

“When asked to write numerals in sequence, Julianna wrote the number 1. When asked to write other numbers, she wrote the number 1 again.” Ouch.

“Julianna would sometimes point to several pictures on the page and was reminded that she could only point to one. This test was given over 2 sessions as she would start pointing randomly.” And giggling with a sly Miss Charming look on her face, no doubt.

“Julianna appears to enjoy socializing” (you think?) “and will wave hi and bye to many adults and peers.” Yup.

“She is a risk-taker.” Uh, yeah.

Concurrent with this is the formal discernment by the Catholic school administration as to whether they can realistically serve Julianna there. I am so torn on the subject. I want her in an environment where faith formation is “in the air,” and I want to have one PTA, one fundraiser, one school calendar to deal with.

And yet…she really needs speech intervention every day, and I will have to transport her myself (barring carpools, but you can’t count on that.) The public school has been wonderful–I love all the people. Her speech therapist calls her “chickadee,” and it makes me all warm and gooey inside. Her para and her teacher are particularly wonderful, and all the necessary infrastructure is right there. Her classmates are incredibly sweet to her. It has been a wholly positive experience, and even considering moving her feels disloyal.

It’s a good position to be in, so don’t take these reflections as complaint. But this is a part of the special needs parenting process, so I share it for the benefit of…well, whoever needs it.

I am being paged for a game of Spot-It. Bowing out for the day.

Kids, Kids, and Everybody Else’s Fault: A 7QT Post

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That, incidentally, is a space shuttle tire from the Shuttle Columbia. Co-ol.

That, incidentally, is a space shuttle tire from the Shuttle Columbia. Co-ol.

“Mommy,” Alex said the other day on the way home from piano lessons, and then paused. “Huh. I guess I’m old enough to start calling you ‘Mom’ and ‘Dad’ now.”

Nicholas, AKA The Parrot, repeated Alex’s words almost word for word. Usually it drives Alex insane and causes a great deal of shouting, but today he ignored it. “I’ve been old enough for a while, I guess,” he went on, “but I like calling you Mommy and Daddy.”

“I do too,” I said. “That’s why I haven’t been in a hurry to tell you to call me Mom.”

Beginning that night, guess who started calling me “Mom” instead of “Mommy?” Here’s a hint. H’s not yet four, and his name begins with N and ends with “icholas.”

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And he’s not just calling me “Mom” automatically, without thought. No, he says it over and over. “Mom, I’m gonna use the toilet. Mom. Mom. Mom, I’m gonna use the toilet, Mom!” It’s clear he’s trying very hard to get me to react. So far I’ve managed not to let on that I’ve noticed. I’m hoping if he doesn’t get a rise out of me, he’ll cease & desist.

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It’s a busy day today, and a busy weekend. I think everyone in the entire city is having birthday parties. Including us….

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The big day itself: last Saturday, sharing a birthday celebration with her great grandmother (after whom she was named!)

The big day itself: last Saturday, sharing a birthday celebration with her great grandmother (after whom she was named!)

Julianna’s having a birthday party tomorrow for her school classmates. You know, when you have a child with special needs, you’re always on tenterhooks, worrying that she’s going to be made fun of or passed over. And when she’s nonverbal–we can’t even have her talking up her own party, or find out from other kids who thinks  they’re coming. So we’re entirely dependent on RSVPs, and if you’ve given a party int he last few years you surely know no one RSVPs anymore. I was really worried that she was going to have a bust of a party, but we actually have six classmates who have responded now, so I’m happy.

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Her celebration has extended a full week, with presents and cards arriving late and multiple celebrations. She’s really cute when she sings “Happy birthday,” but I have to admit that on the forty-seventh repetition it’s wearing a bit thin. Just a bit.

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On a less cute subject: After Sandy Hook I didn’t really watch the news, but yesterday, in preparation for an article I’ve been assigned, I spent a good hour reading news reports about it. It was horrible. I spent the entire time bawling. And for several hours after, I was a lot more cognizant of what a blessing my kids are.

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Speaking of Sandy Hook, and the various bickering going on ever since: does it bother anyone else that no one’s sacred cow could possibly be responsible? Schwarzenegger & Tarantino say don’t blame violent movies. The game makers say it’s not video games’ fault. Gun lobby says it’s not the guns’ fault. Some people want to say a weak ATF is the only problem. Mental health advocates say we can’t warn the public because of those sacred privacy regs. Essentially, everyone says “leave my baby alone, pick on someone else.” If no one and nothing is to blame, then what we’re saying is that we’re completely powerless, we can’t do anything at all, we just have to put up with twenty kids getting killed for no reason at all. Unconscionable, people. News flash: the only solution to a violent culture is one that address everything violent. Everyone is going to have to give a bit, or it’ll all just keep happening. (Read that post, btw. We all have a responsibility in this.)

Well, now that I have that off my chest: have a great weekend!

7 quick takes sm1 7 Quick Takes Friday (vol. 206)

Published in: on February 8, 2013 at 8:43 am  Comments (3)  
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One of THOSE Stories

Sad face

Sad face (Photo credit: Wikipedia)

At eleven p.m. on Sunday night, I was the only one in the house awake. Maybe I was only half awake, but when the screams started from Julianna’s room, I was out of bed and down the hall before she drew her first breath, hoping against hope to get her calmed down before she woke her roommate.

No such luck. I flew past Michael, standing in his crib and wailing, and gathered his big sister into my arms. “Shh, honey, it’s okay,” I said, assuming she’d had a nightmare or heard a firework or a fire engine siren. She didn’t stop screaming, and underneath the noise I heard a rumble from her midsection. I realized instantly what was coming. I scooped her up and ran for the bathroom. And Michael? Michael saw me ignore his wailing and LEAVE THE ROOM. You can imagine the outcry that followed!

We made it–she fought me as I tried to hold her hair back and get her to target the toilet instead of the floor. And all the while, Michael continued screaming. I was standing there thinking, There is NO WAY Christian is sleeping through this. Finally I yelled, “CHRISTIAN! A LITTLE HELP, PLEASE!” And just at that moment I heard his soothing voice and realized he was already in the room with Michael. Michael, who was, if anything, even more upset that the wrong parent had come to comfort him.

I will spare you the details of my half of the job (you can thank me with zucchini bread and book sales, ;) ). I did the worst of the dirty work and then washed my hands and went to trade kids with my husband. At that point, Michael had just calmed down. But he still launched himself into my arms. I laid down with him chest to chest for a few minutes while Christian put Julianna in bed. I do like the feel of baby…oh, well, all right, he’s a toddler now, I have to admit it…against me. His poor heart was pounding. When it calmed down I rolled out of bed and put him back in his crib.

Due to that little drama, Julianna stayed home from school yesterday. And I spent a good portion of the day watching her anxiously and trying to make sure she got hydrated and got a bit of food in her. It took me most of the morning to write yesterday’s epic blog post, and I got very little done all day other than snuggle Julianna and clear out some minor jobs I’ve been procrastinating for lack of opportunity. (Call the dentist. Respond to that program survey.)

She perked up considerably after dinner and some chicken noodle soup, so I’m crossing my fingers for a back-to-school day today, so I can return to normal programming. Which brings me to another point:

I want your help. I want to do a fiction prompt this week for the Write On Edge people, who have asked us to be inspired by two of the most enchanting words I know: gossamer and affinity. But for some reason, I always do better with a third parameter; it seems to pinpoint a structure for the other two. So throw some ideas at me. A concept, a relationship, a place, a scenario–my poor brain is shot after the revolving bugs we’ve been fighting since school started again. I need your help!

Published in: on January 15, 2013 at 7:38 am  Comments (8)  
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7 Quick Takes

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134 pounds. 10 down. 5 to go.

134 pounds. 10 down. 5 to go.

I am wondering how people get such lovely pictures of themselves to put on blogs. Am I the only person in the world who feels prohibitively self-conscious asking someone to take my picture? And wince the whole time because it feels like such a bother on someone (AKA my husband’s) time? Or maybe the problem is we did it while he was trying to get out the door yesterday morning….

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In any case, I needed to crow a bit. For the first time in ten years I don’t feel like my upper regions are grotesquely huge. For the first time, um, EVER, I actually like wearing jeans. They actually feel good now!

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Photo by OnePinkHippo, via Flickr

In this process, the last three months, I’ve come to understand a truth we’ve all been told: more is not necessarily better. The thing is, that truth is contradicted daily in ev.er.y.thing we are exposed to in advertising. Restaurants: bigger portions = better. Car manufacturers: more power = better. And so on. But as I’ve really broken down what goes into the meals I’ve been eating for the last dozen years, my jaw dropped. The way I made a peanut butter sandwich? 450 calories. The way I made a tossed salad, with cheese on top (and lots of it)? 380 calories.

And I realized I wasn’t even enjoying them all that much. In the process of trying to cut back on the high-calorie foods, I found, to my astonishment, that I liked the end product better. A lot better. I’d just been overdoing it all these years. Like the one Blizzard I’ve had since starting this lifestyle change (notice I don’t call it a diet, b/c it’s going to be permanent, if not always as strict as it is now). I had 1/3 of a small Blizzard. I ate it in tiny bites, and it was the best Blizzard I’ve ever eaten. Shoveling in more, faster, just numbs my mouth so I can’t taste it at all.

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Another thing I’ve discovered in this process is that “hiding” spinach in food is very easy. I put the word in quotes because I’m not actually hiding it. It’s openly acknowledged in our house. I did have to hide it at first in the smoothies (raw spinach, no less!), because I knew there would be a knee-jerk reaction. Indeed, Christian won’t eat the smoothies because he knows it’s in there. But the kids drank them for a few weeks and then when they found out there was spinach in it they went, “Oh. Okay, whatever.” You really can’t even taste it in the smoothies. Which then made it possible for me to drop leaves in the gumbo and beef up the vitamin content that way. And so on. Christian’s even using spinach instead of lettuce on his sandwiches now. (Spinach is one of the “super”-veggies, and probably the most flexible as far as I’m concerned. Avocado is another.)

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Moving on.

I had all kinds of thoughtful, reflective posts this week, but I’m in survival mode now because of the rotating sickness in the house and, more to the point, the extremely fragmented nights resulting from them. Michael went to the doctor yesterday and was tentatively diagnosed with sinusitis, so he’s on amoxicillin now and acting…well….somewhat better. He still got up (one, two, three, four, five) FIVE times in the night, meaning I slept from 11-2, 2:15-4:20, and 4:45-5:30. This sort of schedule, more or less, has been going on for about two weeks now. So I’ve given myself permission to spend this week free writing instead of trying to draw out deep philosophical insights. Maybe next week.

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I did make some progress on fiction submissions, though. I submitted one story to two different places and began the process of polishing a couple others, hopefully to send in the next week. Crossing my fingers for making some headway in that area soon.

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Yesterday was a zoo of a day, beginning with two doctor appointments and ending with a First Communion meeting, but the biggest event of the day was Julianna’s IEP/re-evaluation result. They do a major battery of tests to figure out where she falls on the different scales, including an IQ test, which is something we’ve been intensely curious about her entire life. It turns out at the moment her IQ is 60, which is considered “mild intellectual disability” (mental retardation, even as a formal classification rather than a derogative, has recently fallen out of favor–most likely because of the derogatory usage). In different areas her scores are scattered over the higher and lower range, but basically she’s functioning in most areas like a three-year-old. Which is about what I thought. I questioned myself because I’ve been saying that for a year at least. But then again, she passes through stages very slowly, so that’s probably about right.

Well, this is becoming epic in length, so I’ll just stop there. There are boys getting into trouble, and bathrooms in need of cleaning.

7 quick takes sm1 7 Quick Takes Friday (vol. 202)

Published in: on January 11, 2013 at 8:33 am  Comments (17)  
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