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)

Published in: on April 26, 2013 at 6:58 am  Comments (9)  
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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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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.

Published in: on February 11, 2013 at 8:52 am  Comments (7)  
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Rhyme And Reason (or: the Reason she can’t Rhyme)

Helping make cake pops, post-glasses breakage

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)  
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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)  
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Julianna Shows Off

When you’re raising a child with a disability, you have a fine line to walk. You can’t set the bar at an unattainable level; it sets you up for disappointment and frustration, and your child for feeling never good enough. But neither can you set it too low, because we all know kids will live down to expectations as well as up.

The best plan is to stay free of expectations altogether, and just watch as things unfold. None of us are perfect at this, of course, but you do get a certain amount of practice when you raise a child who doesn’t walk until 2 1/2 and at 5 still communicates primarily by grunt and sound effect.

And in that case, the achievements pierce you with wonder, but also something else, something sharper, like a fine cheese or a fine wine that feeds both body and soul. A fine point of joy, carving designs on the boundaries of the soul, making room for it to expand.

You already know Julianna can read. I’m told that kids with DS have trouble “generalizing”; in other words, she can recognize the words on the screen or the cards but not in other places. But Christian wrote “orange,” “red” and “green” on a piece of paper and she read them with confidence.

All that to set up a single photo. This is Julianna’s October homework packet. All month she’s been writing single letters, five each: five Ls, five ls, and so on. But this one was different: draw a face on the pumpkin, and write a sentence about it. Julianna asked for help, so I held her hand. But I did not move it for her. I only gave her support and told her what letters to write.

She’s blossoming in kindergarten, and…wow. Just…wow.

Published in: on October 31, 2012 at 6:40 am  Comments (5)  
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She Picked Me

She always picks Daddy–always–so on Wednesday night, when Christian asked Julianna which parent she wanted to take her down to “church school” (religious ed), I rolled my eyes and wondered why he bothered. She didn’t answer at all, and we went about the craziness of clearing dinner and getting kids rounded up for the weekly trip to church.

Somewhere in the middle of the chaos, we realized Julianna was trying to say something. “Go…dyoo…goo…Bah-ee,” she said.

“What did you say?” Christian asked her, but I took a wild stab. “You want Mommy to take you to church school?” (dyoo=church; goo=school, and Bah-ee is, well, me)

“Yeah!” she said, her voice about three octaves higher than usual, and threw her arms open to me with a huge smile.

“You picked ME?” I shouted. I ran to her and scooped her up, and she locked her arms around my neck giggling with that wild abandonment of dignity that renders her beauty angelic. I can’t capture that smile on the camera, but it knocks me out.

At church, I put her on my back and carried her down the stairs as if she was a much younger child, shaking her from side to side to make her giggle again. When it was time to leave her in the room, she came running to cling to me again, not out of anxiety, but just an unselfconscious display of love.

The standard stereotype of a person with Down syndrome is that they are very social, very loving children. That very afternoon, I heard from a fellow parent who picked her up for me when the bus broke down while I was teaching lessons: “She has quite a following at that school,” he said. “She was waving and yelling ‘bye’ to everyone.’”

But my children are all very loving, and very demonstrative about it. This is not about Down syndrome, per se, but about mothers and daughters. As a mother I adore boyhood. (Most of it. I can’t stand the propensity for breakage, but yanno.) But there’s some part of me that craves the love of a girl, and it’s not a gift I get very often. I used to have regular dreams in which Julianna called me “Mommy.” I have yet to hear the word in anything resembling a true form; it’s special, and it’s cute, but “Bah-ee” doesn’t quite have the same ring to it. So this night was pure gift. And I guess that’s all the conclusion I need for this post.

Published in: on October 24, 2012 at 7:12 am  Comments (5)  
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When You’re Standing On The Precipice

Precipice

Precipice (Photo credit: quinet)

There are moments in every life that I call “precipice” moments, when everything is turned upside down and you find yourself reeling at the edge of a proverbial cliff. It’s actually a physical sense, this loss of balance. The feeling that everything you once knew to be true cannot be trusted; you have very little to hold on to and feel certain of.  You’re stuck in the moment in a way that is entirely unique to the precipice, and for that reason, you can recall certain details–a smell, what you were wearing–as if they are present, not memory.

The moment you find out your child has special needs is one of those. You find yourself returning to that moment again and again for years to come, wrestling with the emotions you felt then, and which surge upward again as if they’re brand new, no matter how much time and emotional distance has passed. You keep thinking someday you’ll stop remembering, but you never do, because the fact is, this is a pivotal moment in your life. Pivotal in the sense that the direction of your life is shifting upon that point in time.

In the past twelve months, our local Down syndrome family network has begun reaching out to hospitals, and we have been able to connect with families receiving a diagnosis of Trisomy 21. I feel blessed to be able to interact with people standing at that point, because here, I know I can help. I know what is needed is affirmation.

It’s always a doctor who delivers this lightning-bolt, and yet the most important things the families need to hear when receiving a diagnosis of Down syndrome are not medical. That stuff goes flying over your head; in the first hours and days, there’s nothing in your brain but this stark raving terror screaming over and over, “I CAN’T I CAN’T I CAN’T I CAN’T I CAN’T NONONONONONONONONO!” Just to filter that out enough to carry on a normal conversation is no easy task. The effort required to understand medical jargon is nothing short of epic.

There are only two things a new parent needs to hear, and unfortunately they probably sound condescending except from the lips of someone who’s stood in their shoes. So I share them today in the hopes that this post might reach someone who needs to hear them:

1. It’s going to be okay.

Daddy and Julianna, age 3 weeks

2. A newborn is a newborn is a newborn. A baby with Downs is not born delayed. He or she 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. This is a universal truth that applies to children with Downs, too (barring some immediate medical emergency). Delays are a topic for later. That’s the beauty of God’s plan. If, at the moment of our children’s births, we knew everything that would ever cause us grief, none of us would be able to handle it. Delays, medical issues, and understanding unfold slowly, in manageable bites. Even if it doesn’t always feel that way. So take a deep breath and parent this baby one day at a time.

*

October is Down Syndrome Awareness month, and a lot of bloggers participate in “31 for 21,” promising to post every day on Trisomy 21 and related issues. I think I might even burn myself out if I tried that, to say nothing of you fine people, so I’m just going to devote Wednesdays to the topic of my darling girl. This post is adapted from one originally shared July 20, 2009.

Published in: on October 10, 2012 at 7:40 am  Comments (9)  
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A Regular Kid

She’s a charmer, my girl. Adults everywhere within her sphere of influence fall obediently like dominoes into line behind her, excusing her foibles and focusing on her angelic qualities. She knows it, and she knows how to use it. I can’t tell you how many times people have come to me literally hand to heart, sighing, “Oh, she is so sweet!” or “What a cutie!” or “Oh, we just love Julianna!”

I’ve gotten a bit smug about it, truth be told. Only her siblings, parents and grandparents are allowed to wag fingers and list her character flaws.

So her first kindergarten report was quite a shock. “She definitely needs the para,” her teacher said a little over a week into school. “When the para is working with other children, that’s when Julianna acts out, getting up and moving around the room, poking people or pulling hair.”

Irrational though it seems, my first instinct was to haul out the Mother Bear Claws. How dare you imply that my daughter doesn’t have a halo?

Now, don’t get me wrong. Her teachers like her just fine. But up ’til now, Julianna’s had a fan club comprised of a) friends of her parents and b) people in the disability field. Those who work with special needs are a special kind of person themselves, deep in empathy, with, I truly believe, a greater capacity for love than the rest of us.

It’s a wholly different matter to toss her into a regular classroom. I’ve loved every one of my kids’ teachers, but none of them have ever bonded to my children the way the special ed teachers and therapists bonded to Julianna in her first few years. How can they? The level of intimacy isn’t the same. In baby- and toddler-hood, it was one on one. In preschool, Julianna’s early childhood classroom had 9 students with at least 2 adults on hand at all times. It’s a far cry from a classroom with 18.

As I talked myself down off the Mama Bear pedestal, I began to realize this is a pretty valuable thing we’re receiving. Now, Julianna is being treated much more like every other kid her age. Her teachers and therapists have always pushed her to do her best, but now it’s an unemotional expectation instead of a cheerleading squad behind her. Just like every other kid. She was always guided toward appropriate behaviors, but there was always a loving tolerance that no longer exists; now, she’s expected to do the right thing, just like everyone else.

It’s a gift for her to be treated like a regular kid. Christian and I are people pleasers, hard-wired to want to make authority figures happy, constantly analyzing and on the hunt for ways to pursue excellence. So is Alex. So it’s an adjustment for us to see our free-spirited little girl tear through the world on her own terms. It stretches our minds, and it stretches our hearts. But the more of life I live, the more I value being able (read that: made) to stretch.

On a more fundamental level, it’s such a blessing for her. It’s good for her to have her sense of self as center of the universe kept in check by not being above the “law.” It’s an understanding she needs in order to integrate into the world. So I’m sheathing my claws and embracing having a kid who doesn’t get glowing progress reports every week. Go Julianna. The world is yours.

*

October is Down Syndrome Awareness month, and a lot of people participate in “31 for 21,” promising to post every day on T21 and related issues. I think I might even burn myself out if I tried that, to say nothing of you fine people, so I’m just going to devote Wednesdays to the topic of my darling girl.

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Published in: on October 3, 2012 at 7:42 am  Comments (6)  
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