“Eyes Ahead”

If you’ve never been walking with Julianna when she runs smack into something at eye level, you might not understand why we laughed so hard when this book came home in her backpack.

My name is Julianna.

This is a story about keeping my eyes ahead.

Sometimes when I walk,
I look down at the ground.

When I look down at the ground,
I can run into things and get hurt.

Sometimes I run into walls.
It is not safe to run into walls.

Sometimes I run into doors.
It is not safe to run into doors.

Sometimes I run into friends.
It is not safe to run into friends.

If I keep my eyes ahead,
I will not run into my friends.
I will be safe.

If I keep my eyes ahead,
I will not run into doors.
I will be safe.

If I keep my eyes ahead,
I will not run into walls.
I will be safe.

My name is Julianna.
I will keep my eyes ahead.
I will be safe.

Well…at least we know what language to use now!

Published in: on January 5, 2012 at 7:55 am  Comments (3)  
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She loves babies. Is that good or bad?

She adores him. He’s like a magnet, a little baby black hole whose force is irresistible, no matter how many times Mommy tells her to leave him alone.

At four years and almost eleven months, she has finally entrenched herself firmly in the imaginative play stage. She loves dolls, and she doesn’t always connect the difference between cloth-and-plastic baby and real baby. It’s half-electrifying, half-terrifying, that his hands flap around and tap her face when she holds him. And she can’t seem to understand that she can’t drag him around by one arm or pick him up by the neck, the way she does her dolly.

She’s fascinated by nursing. “Baby–eat,” she signs, every time we sit down, and I have to remind her to use her words. “Buh buh,” she repeats dutifully. “Eh.” (We have a ways to go on speech, but she’s trying!)

So it is that after dinner on the Tuesday before Christmas, the first dinner in which I brought the Boppy to the table (although he didn’t actually nurse), I get up to start washing dishes and my husband says, “Kate, look at her!” I turn around and find Julianna sitting in my chair at the end of the table, with the boppy around her waist, grunting and reaching her arms out to have the baby put on her lap.

Christian and I chuckle. And then my mind races ahead a decade, two decades. “Oh, I hope she never has reason to nurse a baby,” I murmur. Christian hmmmm‘s his agreement, and Alex frowns. “Why?” he says.

“Never mind,” Christian says hastily.

I struggle mightily all the time to reconcile my own beliefs about sexuality–openness to life, the holiness of children, respecting the woman’s body as it was created and not imposing artificial infertility upon it in the name of convenience–with my wishes for Julianna. It’s very uncomfortable to see the conflict between my beliefs in general and my complete unwillingness to apply them to my daughter’s life.

Culturally speaking, birth control is absolutely a given for girls with Down syndrome. The nature of her chromosomes makes it a 50-50 shot that any child she bears will also have Down’s. And I don’t think she could raise a child, with or without Down’s. I know that any child my daughter bears will ultimately be my responsibility. And I don’t want to raise grandkids, with or without special needs–but especially, I don’t want to start down this road again at the age of fifty.

It seems sad, wrong somehow, to want to deny my daughter the fulfillment of womanhood. How can I, in conscience, willfully deny her what I spent years longing for myself, what has brought me so much fulfillment and joy?

Yet my greatest fear is that Julianna will be taken advantage of–in high school, in independent adulthood. She is beautiful, and she is vulnerable. I love that she’s beautiful, even by cultural standards, because it facilitates her ability to be an ambassador for special needs. But it also terrifies me. How can I equip her for adolescence, for the normal desires that she, even more than the rest of her peers, needs not to indulge? How can I protect her from being taken advantage of because of her beauty and her vulnerability? I want her to be independent, to have autonomy and the gift of independent living. But the more independent she is, the greater the risk.

Maybe I underestimate her. Maybe her very chromosomal giftedness will connect her more closely to God, render her impervious to what I fear. And maybe she’s perfectly capable of mothering a child.

I know for sure I’m borrowing trouble; for Heaven’s sake, she’s not even in kindergarten yet. But these are the things a parent of a child with special needs worries about. And I share it as one more slice of that life: the beautiful and the difficult.

special needs wordless wednesday

Published in: on December 21, 2011 at 8:33 am  Comments (6)  
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Prenatal Diagnosis and Abortion: What We Can Do About It

I’ve talked before about how I view prolife work, but today I have the honor of guest posting over at The Practicing Catholic on the topic. I believe that if we find the statistics about prenatal diagnosis and abortion apalling, we have to change the culture that almost guarantees such a high rate. But we don’t do that by arguing hot-button political issue/s–we do that by changing ourselves–by making contacts and interactions with the disabled population, for us and for our children. I hope you’ll take the time to visit and read, because this is so important!

Published in: on November 17, 2011 at 5:06 am  Comments (2)  
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When Julianna Laughs

My children have the most beautiful laughs. But it’s a funny thing. The boys speak, they laugh, and they are of the Earth. At every moment, they strain toward the next level, their every skill a steppingstone to something bigger and better. They warble with glee, their voices chipping at the edge of the future.

But Julianna—there’s something different about her laugh. Something silvery and dusky and altogether otherworldly. There’s something about the way she reacts and interacts that makes me wonder sometimes if it’s not so much that her intelligence is lower, but that part of it exists in another plane. Julianna, perhaps because she’s so quiet, so focused on the task at hand, whether it’s listening to music or pushing a pop mower or hanging over a playground swing…Julianna breathes a different feel into the world than her brothers do. A feel of serenity.

Which is not to say she doesn’t have her stinker moments. She does—and how! In three hours one Friday morning, she took the lid off the honey jar and dumped half its contents on the table; she turned the baking soda box upside down on the bathroom counter; and she emptied the canister of Cavender’s Greek Seasoning. Julianna whiny is a sight to behold…one we behold every morning.

But then there are times when she meets my eyes and I can’t breathe. It’s like falling in love, instantly and irrevocably. And although I fall in love with my boys regularly, that feeling is more tender, the most beautiful and prosaic of loves, the one every mother feels for her child. Falling in love with Julianna is more like being knocked flat on my back by a lightning bolt, like Paul on the road to Damascus.

When I feel that tug on my spirit, the one that sucks me into a whirlpool of painful self-recognition, I often pause to ponder the opinions expressed, usually anonymously, online. The people who think Julianna’s life is somehow worth less, that she is a drain or a burden on the rest of us, that it would be kinder if people like her were never brought to birth—or, conversely, that the things that help her reach her potential should be no one’s burden but those who chose to bring her into the world–as if she’s less important than a normal child, for whom we’d never blink an eye at providing those same supports. That she should be isolated behind a wall. Anything to ensure that no one else is inconvenienced by her existence.

I thank God I was given the gift of a child with special needs. The difficulties that so frighten the uninitiated have broken my heart and left it open to recognize beauty in all the other moments, the ones you can’t quantify. In some ways she is, indeed, “the least of these.” And yet when she laughs, when she catches my eye and bodyslams me on the pilgrim road, I can’t help feeling that all the platitudes, annoying though they may be, are correct: she is closer to God than I ever will be.

Published in: on October 18, 2011 at 10:25 pm  Comments (17)  
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I Don’t Freak Out…unless…

I don’t freak out about my kids…unless the topic is Julianna and kindergarten. I was honored to be invited to participate in Crippled Girl’s blog month-long series on special needs. Hop on over!

Published in: on October 17, 2011 at 4:27 am  Leave a Comment  

A Guest Post on Down Syndrome

I don’t host guest posters very often, but when I received this email from a local woman named Karen a few weeks ago, I asked if I could post it in honor of Down Syndrome Awareness Month.

(Did you even know it was DS Awareness Month? Yes, it gets so very much coverage.)

Please welcome Karen and give her some “comment love,” as they say. :)

****

ZAPPPPPP!

Like a lightning bolt God injects the races of humanity with a “Special Race:” Down Syndrome. 

Leaping over all boundary lines comes God’s Gifts of Love and Simplicity.  These Sweet, Simple, Joyful people come to us just wanting to love us and help us.  To be accepted and acknowledged. 

My sister Peggy came to us in 1956.  At that time there was a decision whether to raise her with the rest of us and Thanks Be to God, my parents decided to keep her at home. 

Because of her I learned that all of life is not generic, sterile, pretty, or easy.  I learned to deal with the unusualities of people.  I learned patience and a sense of humor.  I learned that love comes unexpectedly and exuberantly.

My sister Peggy had an active role in our family.  She taught my children how to make their letters and numbers while they still knew less than she did.  She ran to greet us whenever we visited.  She visited us once and helped our church sacristan go through every one of eight hundred (800) loose-leaf hymnals noting which pages needed to be replaced.  Who else would have that kind of patience for tedium?

Peggy worked and volunteered in the community.  She excelled in latch hook rugs, taking a first place ribbon at the county fair over the home ec teacher!  She excelled in Special Olympics and carried her weekly bowling score in her pocket until next week brought a new score.  

She kept a notebook of birthdays, including the Bishop of the Diocese of Jefferson City. She never knew a stranger, striking up conversations wherever she went, and evoking fond kindness from everyone who encountered her.  Doing something kind for Peggy made people feel good about themselves.

Our family looks on Down Syndrome as a Blessing and a call to Growth, and never, never as a Curse or something to be Avoided or Aborted.

God only gives us as much as we can handle. 

NOTE:  Peggy was born in 1956 and died with Alzheimer’s in 2004 at the age 47. Her Alzheimer’s set on about the age of 43.  Because my father was in the Army-Air Force and earned a spot in the national cemetery, Peggy is buried there with Daddy, awaiting Mother.

Published in: on October 10, 2011 at 6:43 am  Comments (6)  
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Shoe Shopping For Kids With Special Needs (or: You’ll Never Complain About Going To the Mall For Shoes Again

We’ve been having insurance problems lately. (Lately? When have we not had insurance hassles?) Fortunately, we’re not having health problems…just insurance problems.

Most recently, the clinic that measured Julianna for her new shoe inserts–in August–called to ask me to get a detailed justification from my doctor, because the insurance was balking at paying; these inserts are different from the ones she’s used the last couple of years. Balking, even though, to the best of my knowledge, they’re cheaper.

I called my mom to complain, and she paused. “That sounds like a reasonable request to me,” she said.

I got to thinking–yeah, actually, you know, it probably is. But it made me realize, too, that this is one of those slice-of-life moments that people who have typically-developing kids will probably never see. And so I decided to blog about it.

Most people have kids who learn to walk wearing the worst foot support known to humankind, and they do just fine. (Kids are adaptible that way.) Most people, when their kids outgrow a pair of shoes, go to the store and buy a new one.

Not so for us.

Julianna’s feet turn outward, to the point where she basically walked on the side of her foot. Enter custom orthotics: DAFO, to be specific. If you go to this website, you’ll see a scrolling row of products. Julianna’s been through several of them, most recently one that looks sort of like this (only it was custom fit):

Enlarged view of image

 

As best we can tell, the cost for this insert was upwards of $1000. Enter insurance, who interestingly enough, never peeped about paying for them.

Now, imagine trying to put those inside a normal shoe. Having worked in a shoe department, I can’t tell you how I dreaded putting little feet inside inflexible shoes…WITHOUT worrying about an insert. Imagine how much worse it would be with this hard plastic thing. Enter Hatchback Shoes:

Three velcro straps per shoe: one over the tongue, one on each side. Great shoes. Not so fun for getting them on and off to go through airport security, but fortunately, we don’t fly too often.

So this spring, a PT suggested that we try Sure Steps instead: a less rigid, less expensive insert, and, it turns out, one that might be able to fit inside a normal shoe.

Midsummer, I realized Julianna’s toes were right at the end of her Hatchbacks, so I started making phone calls. We had an appointment in mid-August to have her measured. Two weeks ago, I got a call from the orthotics place saying the insurance was giving them trouble, and could I please get a note from my doctor? But the doctor is not the origin of the order. The physical therapist is the origin point.

So I contacted Julianna’s PT, who wrote up a justification and sent it to me.

And I forwarded it to the doctor.

And the doctor forwarded it to the orthotics store.

And the orthotics store could then, at last, talk to the insurance.

So midsummer I put the shoe-buying process in motion, and on the fourtheenth of September, at last, the order was allowed to be placed.

Hence my annoyance at the insurance hassle.

You’ll never complain about having to go to the Mall to go shoe-shopping, will you?

:)

Touch Points, the sequel

Yesterday afternoon, Julianna and I went to talk to the “M3”’s—the third year medical students at the university. They are on an eight-week rotation through the major areas, currently ped’s. They have weekly seminars in which guest lecturers come in to address topics in the field.

I have no idea what other topics they are learning, but the organizers were enthusiastic about having us come in to talk about disability, but specifically Down’s, from the subjective, experiential point of view. When I first floated the idea almost a year ago, the reaction from those I asked was cautious, and it made me pause…for months. But when I floated the idea again six weeks ago, things fell into place effortlessly. The mark of an idea whose time has come, I suppose.

I didn’t know how many students to expect; there were not quite a dozen. I was feeling intimidated by the mystique of the medical field until I walked in and saw how very young they all looked, and how nice. And the fact that they all sat at the back of the room, just like at church or  in any other place where people are themselves feeling intimidated and unwilling to be thrust into the limelight. That made me chuckle inside, and I relaxed.

I brought Julianna so they could interact with her; my feeling is that much of the fear of disability comes from the lack of such meaningful interactions. But at first, I thought Julianna was just going to sit in her chair beside me and read her “ABC for You And Me” book, and never even make eye contact. Christian stopped in, and even he got a tepid reaction from her. But he was on his lunch hour, and when he left, she went to the door to say “buh-buh,” and she never came back to me. She started wandering up and down the rows of tables, peering up into people’s faces and waving and smiling until they chuckled and smiled back. She discovered that one of the young women had a stethoscope, and she helped herself. I winced a bit, because we’re trying to teach her that limits apply to her too, but the girl waved it off, and after all, this was what I wanted: for Julianna to get comfortable and to start making connections. Which she did. Using the stethoscope. Now, you might remember that the last time Julianna saw a stethoscope she considered it an instrument of imminent destruction. I couldn’t believe she had now decided it was a toy. She went around the room “listening” to ribs, arms, and bellies (which was particularly cute because the ear buds were nowhere near her ears), and I lost my audience entirely.

Which was, after all, exactly what I had hoped for.

**

(Note: These pictures were taken yesterday morning. They have nothing to do with the presentation, except that she was being cute with my sunglasses and it was the same day, so I thought they’d do for an illustration.)

special needs wordless wednesday

Published in: on September 21, 2011 at 5:29 am  Comments (10)  
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American Idol In Training

We always knew she was musical, but on Labor Day, it took on a whole new meaning.

Witness what Julianna thinks her great-uncle’s cane is meant to be used for:

(Obviously, I should have dressed her for cuteness instead of for combine riding.)

Croon, baby girl, croon.

Now, don’t you wish we had a video camera to catch this moment? Guess what–we did!

http://www.youtube.com/user/basifamily?feature=mhee

In all seriousness, Julianna often doesn’t have a strong look of Down syndrome. And for this reason we sometimes hesitate to share the moments when her mental retardation manifests. (It still hurts to use that phrase.)  But is that a measure of respect for her, or of our own discomfort? The fact is, however it sounds, she is singing–the pitch goes up and down in approximately the right places, the rhythms stop and start with the melody, the inflections follow the music. And besides, since I’ve been talking about this phenomenon for weeks, I think it’s time to share, now that we’ve managed to capture it. I hope you enjoy!

*

Shared with Wordful Wednesday and

special needs wordless wednesday

Published in: on September 7, 2011 at 4:34 am  Comments (11)  
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A Kerfuffle About Doughnuts (or, The Rules Apply to Special Needs Kids, Too!)

Doughnut covered with coconut flakes

Image via Wikipedia

By the time I got there, Alex was crying.

It began, as far too many of these encounters do, with Julianna. She took advantage of the fact that her parents were caught in conversations after church and helped herself to someone else’s juice cup. We saw her, but the people talking to us were not to be sidetracked. “Alex,” Christian said, “go get the cup away from Julianna.”

I shot Christian a glare; it’s totally inappropriate to saddle Alex with this task—for one thing, because it encourages his bossy side, but at a more basic level, Julianna doesn’t recognize his authority and it always gets ugly—but I couldn’t get out of the conversation. (I mean I couldn’t get out of it. You know the type.)

By the time I got disentangled, Alex was huddled on the floor crying with a grownup leaning over him and Julianna continuing to drink someone else’s juice in blissful…or should I say willful…unawareness of the drama playing out behind her back.

The Julianna damage was done, so I focused on Alex. I drew him into a hug, comforting him, whispering in his ear that he was in the right, no matter what the adults said.

The man looked abashed. “He tried to take the juice from her,” he said, “and I told him it would be nice of him to let her have it.”

How can I respond? He doesn’t know the history of the Julianna-versus-the-doughnut-war. For several weeks this summer, the choir had to warm up in the room where coffee and doughnuts are served after Masses. No matter what we did, she always managed to figure out when I was focused on conducting, and slip in to steal a sweet treat. Once, we managed to keep her out of them until we were packing up to head over to church. By then, the last Mass had let out and the line of people waiting for doughnuts had begun to file past the boxes. While we were stacking books and answering questions, Julianna walked straight to the front of the front of the line and grabbed a doughnut right in front of an adult…WHO LET HER DO IT.

The next week, we resolved to win the battle. We dragged her away from the table three times. She knew the rules, and was responding with a petulance that proved it. And yet the fourth time we looked her way, there she sat, eating a doughnut with one of the women staffing the table, who (it transpired) had given her one despite Alex protesting that she wasn’t allowed. (A child with special needs is never as clueless as they want you to think they are.)

Are you getting the idea, people? THE GROWNUPS ARE THE PROBLEM.

You think she’s cute, and she is. You feel sorry for her, and you decide the rules don’t apply because she has Down syndrome/cerebral palsy/autism/fill in the blank. You don’t want to be a jerk to a child with special needs, or you think they don’t understand, so you treat them as if the rules that apply to everyone else don’t apply to them, because of their disability.

It sounds ugly, but be honest. If a “normal” child came up and tried to butt in line ahead of you and steal a doughnut, would you let him? If a “normal” child took a cup of juice from your table, would you chuckle and say “oh, how cute”? No way! You’d be firm, tell them “no,” and possibly mutter about their parents.

Think for a minute. What if my child had celiac disease? What if she was diabetic? Forget all that, let’s just talk about life. If you decide that standards of behavior don’t apply to kids with special needs, how are they supposed to turn into anything but self-centered jerks who use manipulation and a victim complex to make life living hell for everyone around them?

Kids know better. I’ve yet to see a kid that let Julianna get away with anything. Kids come to the parents and say, “Miss Kate, Julianna pushed me!” exactly as they would if the name was “Alex” or “Nicholas.” No, it’s the grownups who are the problem.

I’m fully aware that as Julianna’s parents, it’s our job to teach her acceptable and unacceptable behavior—not yours. Believe me, we’re working on it. But you make our task far more difficult when you apply double standards in the way you treat children. You add bricks to the wall that separates her from integrating into society. Because though you may think you’re acting with compassion, other children see only injustice.

And they’re right.

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