Down Syndrome | So much to say, so little time

Babies, Bird Babies, and Flower Babies: a 7QT post

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Today is the last day of school. The kids have been bringing home treasures all week, including these two pictures from Julianna’s school:

Christian has taken a couple of days off this year to participate in their program for dads–hanging out in the classrooms to model father participation in kids’ lives. I adore that picture of them.

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Speaking of Julianna, she is trying to communicate everything by speech now, which makes life a bit exhausting and daunting, because it’s hard, hard, hard to understand her. There are improvements–I was over the moon last night to hear her say “Sthully Mah-ee!” (Silly Mommy!) Not Bah-ee! And a recognizable S! But here’s the point of this QT: are you ready? Take a wild guess which family member understands her speech the best. Not the parents. Nicholas. Three times this week, he’s understood something I didn’t. “Wye Shim!” she kept saying insistently, as I tore apart my brain trying to figure it out, and Nicholas, in next room, yelled, “No! I’m not watching Fireman Sam! I’m watching Bob the Builder!” (Which he later interpreted for me as “Boh-Bee-Boh.”)

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I’m having another Wildlife Mama and Baby Moment this week. Early this spring, Christian discovered a birds’ nest in the gutter outside our bathroom window. This week we have had a new obsession: watching baby birds. I’ve never managed to get a picture of Mama Bird actually putting the food in the babies’ mouths, but it is fascinating. I don’t hear any squalling, but they look like they’re squalling! I’ve blown over a hundred pictures this week. Mostly I’ve gotten lots of picture’s of a bird’s butt:

and

(Why yes, she is sitting on her babies’ heads. I haven’t figured that one out. She sat there for fully five minutes on his head at one point. Maybe this is Robin Discipline, to keep Baby from dying by hurtling out of a nest that is three stories off the ground. It’s a mystery to me.)

But last night, at last, I got the money picture.

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And since we’re talking about mamas and babies, it’s Mommy and Michael time. I was playing ball on the floor with him the other day when he threw the ball away from me instead of toward me, and then, thinking himself tremendously funny, crawled after it, around the corner out of my sight. I listened to his progress across the kitchen floor: ki-DUNK, ki-DUNK, ki-DUNK, ki-DUNK, and thought how long it had been since I had heard that sound. At the far end, he retrieved the ball, got to his feet, and ran back, bare feet on the Pergo: slap-slap-slap-slap.

Not two hours later I was putting him to bed and chewing on him, reveling in the giggles and wishing I could get it on video, when I realized why the videos never satisfy my desire to hear that sound again: because the sound is only a sliver of the enjoyment. The enjoyment of a baby is a full-body experience, engaging all the senses, not just sight and sound. In this case, the feel of skin against my lips, and the smell of cinnamon graham cracker embedded in his face. This revelation has made me experience all my children differently. I’m really thinking about the feel of them when we’re interacting these days. I’m dreading Michael getting bigger. I just love babies, and nobody else wants me chewing on their babies.

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I talked to a genetic counselor about my family’s history of BHD this week. We didn’t quite get to the level of a blood test because of insurance questions that have to be worked out, but we spent over an hour talking through the family history. She had an 8 1/2×11 piece of paper with a family tree in the middle. We got done with my siblings–each of them with a line and extensions for how many kids and what sex–and then she said, “Tell me about your mother’s family.” I looked at her piece of paper and said, “There are ten siblings.” Her pen paused as she, too, surveyed the 5 1/2 inches’ space she had to make that happen, and I laughed. “Yeah, I want to see how you fit all that on there!”

Midway through the process, when we hit a bunch of questions I didn’t know the answer to, I said, “That’s okay, I know there are a bunch of documents on the family’s website.”

Again, this poor woman’s eyes got round. “Your family…has a website?” she said blankly, and I started laughing, because in all the years my family has been having mass political, ahem, debates, via email and coming up with more and better ways to keep an ever-expanding group of people in the know, it never occurred to me that it was weird for a family to devote a website to themselves.

And that got me thinking: later, as I was digging up .pdfs of people’s diagnosis letters, and contacting my cousin for information about her medical history…I realized how amazing, and how beautiful, it is that I’m part of a family that, despite their strongly-held and deeply contrary opinions, is willing to lay out their personal history for each other’s benefit. I feel very blessed, very privileged. Big families rock.

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Nicholas makes me laugh.

My FB status from last night:

Nicholas is the king of killer funny sayings lately. Today he heard the Alma Mater playing on the fake-o carillon at the Alumni Center, and he said with a sigh, “I used to play that song. When I was in college, I played it.”

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And here’s what else is making me happy these days:

And just for a bonus, here’s a link:

“Keep Bad Theology Out Of Oklahoma“. Hear, hear.

Published in:

on May 24, 2013 at 5:30 am Comments (4)
Tags: children, Down Syndrome, family

Julianna (a 7QT post)

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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

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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!

Published in:

on May 10, 2013 at 5:36 am Comments (16)
Tags: Down Syndrome, education, Julianna

Motherhood, Mostly (a 7QT post)

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I’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.

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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Oh 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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And 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?”

Published in:

on April 26, 2013 at 6:58 am Comments (9)
Tags: Alex, Down Syndrome, faith, Julianna, Michael, Natural Family Planning, Nicholas, parenting

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

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

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What 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?)

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

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

Thursday, 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.

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.

A 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)
Tags: Down Syndrome

Adventures In Speech Production (and other kid-ness)

Sunday 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)
Tags: Julianna, speech

What I Learned From A Kindergarten SpEd Re-Eval

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.

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.

Published in:

on February 11, 2013 at 8:52 am Comments (7)
Tags: Developmental disability, Down Syndrome, education, Individualized Education Program, Julianna, Kindergarten

7 Quick Takes

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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.

___4___

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.)

___5___

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.

___6___

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.

___7___

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.

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

Rhyme And Reason (or: the Reason she can’t Rhyme)

Helping make cake pops, post-glasses breakage

I haven’t written about Julianna’s speech and cognitive development in a while. You’re ready for a post on that, right?

Last Friday morning, hours before the second day of school post-Christmas, Julianna woke up at 4:30 a.m. with terrible respiratory distress and a moderately high fever. By 7:30 a.m. I was sending emails and calling off the bus. Along with the email to her teacher, I crowed about Julianna knowing how to spell all of the “no excuse” words they’d given her. Pretty quickly I got a note back, saying basically: Yup, we know she can spell. She’s great at memorization. Not so great at concepts like “how many syllables?” and rhyming.

Rhyming! Rats. I’d forgotten that one. They told me at her parent-teacher conference last fall that we needed to work on that. So Friday morning I sacrificed my writing time to bring Julianna over to the computer and find some rhyming games.

She was abysmal at it. Nicholas can rhyme better than she can. I drew out syllables until even I was ready to smack myself for being so annoying: “Does Ha-a-a-a-a-at rhyme with Fr-o-o-o-o-g? Does Ha-a-a-a-a-at rhyme with Fr-o-o-o-o-g?” Almost half the time she just said “yes” no matter what I said.

I started having her try to say the words, and that’s when it smacked me upside the head: she can’t identify rhymes because she can’t say them. She can hear and distinguish words, yes, but her pronunciations are so far off on so many words, and it’s in the sound production that you really begin to make those kinds of connections.

In fact, her speech is actually worse lately (at least in terms of us comprehending it!), because 1) she’s trying to say so much more, to communicate so much of what’s in her head, and her poor muscles just won’t cooperate, and 2) they’ve been working with her on ending consonants, which has for some reason caused her to warp all her middle vowels. Hence, “milk” becomes “mocha” and “drink” we’ve only re-identified in the last two days as “doh-koh.” (Which is better: “deee” or “doh-koh”? Agh!) It’ll all come together eventually, but it was quite the light bulb moment, realizing that what appears to be a cognitive deficiency is actually–still–the fault of low muscle tone.

Every problem this girl has is low muscle tone related: her health problems, her speech problems…

Well, I guess the attitude can’t be blamed on that, right?

Published in:

on January 8, 2013 at 9:10 am Comments (9)
Tags: child development, Down Syndrome

When You Are Raising A Daughter With Special Needs (or: Borrowing Trouble)

It must have been the convergence of James Bond with a bedtime call from my sister, announcing the birth of her first baby, a girl. Maybe it was superimposing the image of her baby upon my own baby girl, no longer a baby, upon the image of the Bond girl, once victim of the sex trade and now caught in a supposedly even scarier net.

I don’t know what caused it. All I know is that I laid awake that night for an hour, two, three, tossing and turning, my insides churning.

When you’re raising a girl with special needs–especially one as beautiful as Julianna–certain subjects are bound to be especially worrisome. When Julianna was a baby, we attended the National Down Syndrome Congress convention, and for some reason I landed in a session on sexuality. It was taken for granted that you’d put your chromosomally-gifted child of a certain age on birth control, just for precaution. It was the first time it had occurred to me that what is already a high-stakes area in any family (particularly one with both philosophical and religious objections to manipulating the reproductive system), is even more fraught with terror in my own parenting journey.

The first time, but not the last.

I want Julianna to move out on her own, be independent, make her own decisions. But let’s be frank. The idea of raising my chromosomally gifted daughter’s chromosomally gifted child is enough to make me understand why so many parents keep their kids close under their wing into their twilight years. The fear of Julianna being taken advantage of, or simply having her feelings run away with her, strikes terror deep into my heart. Call me selfish, but I want my kids out of the house; I want the freedom and coupledom that is the heart of the empty nest experience. I have no interest in raising my grandchildren, and particularly not in starting this whole process over again–therapies, IEPs, and high maintenance everything–at the age of fifty or fifty-five.

Of course, there’s only a 50% chance that a child of Julianna’s would have the extra chromosome. That opens up another whole line of thinking. Imagine raising a child who’s bound to discover at some point, probably just about the time she hits adolescent rebellion, that she knows more and can do more than her mother.

This entire line of thinking is called Borrowing Trouble, and it’s beyond nonproductive. I’m well aware of that. It’s not like I live my life in terror over these issues. But it would be beyond foolhardy to take a Scarlett O’Hara approach to this and think, “I’ll think about that some other day.” If there is a safe path through these perilous waters, it comes by laying foundations so solid, so wide and deep, that nothing can shake what sits on top. Foundations are built now: today, tomorrow and the next day, amid lost teeth and learning to write her name. Waiting until Julianna is ten or eleven to be thinking about it isn’t an option.

Published in:

on November 12, 2012 at 8:58 am Comments (14)
Tags: Down Syndrome, faith, Julianna, parenting, Sexuality

So much to say, so little time

Life at the intersection of faith, parenting and the written word

Babies, Bird Babies, and Flower Babies: a 7QT post

Julianna (a 7QT post)

Motherhood, Mostly (a 7QT post)

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

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

Adventures In Speech Production (and other kid-ness)

What I Learned From A Kindergarten SpEd Re-Eval

7 Quick Takes

Rhyme And Reason (or: the Reason she can’t Rhyme)

When You Are Raising A Daughter With Special Needs (or: Borrowing Trouble)

Kathleen M. Basi

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