Nationalized Health Care, Down Syndrome, and Abortion

I’m going to go out on a limb today and say something that a good portion of my readership probably won’t like. Namely: I support Obama’s health care plan.

You might remember that last year a group of us put together a bill to mandate coverage of “habilitative” services for children with special needs. This extremely frustrating process has shifted me from a default status of “big government=bad” to support of national health care.

Consider this:

  • A child who has a stroke on the birthing table will receive whatever therapies s/he needs throughout his/her life. But a child who has a stroke in utero, even a day or two before labor begins, will be denied the same coverage.
  • Likewise, if Alex (Heaven forbid) suffered a fall and received brain damage that made it necessary for him to receive ongoing physical, occupational, or speech therapy, he’d get it. But Julianna, who already faces an uphill battle for learning anything (aside from being cute, which she gets naturally :) ), gets denied based on her diagnosis of Down’s.

As long as we were covered by First Steps, we got what we needed. It is a great program. But it only goes to age 3—and Julianna didn’t even walk until 2 ½. For 2 ½ years, we threw all our effort behind the basic gross motor skills, with OT and speech taking second place. This is the natural order of learning. But by the time she walked, we had less than six months to focus on speech therapy. Six months, when it took 2 ½ years to teach her to walk.

At 3 ½, she receives one hour a week of one-on-one speech therapy from the public schools. And although her comprehension is within twelve months of normal, she’s not even as far along as Nicholas (16 mo.) in speech production. She doesn’t know how to control her muscles. She can’t even babble the back of the mouth sounds (k, g, etc.) The only solution is speech therapy, and a lot of it. Can the school give her more? Probably. We’re certainly going to ask, come fall. But through insurance, we’re just plain old out of luck, because she has a pre-existing condition—namely, Down syndrome.

And we have good insurance. Insurance that served us well, as long as we had somebody else providing therapy.

This is the inequity—dare I say, the discrimination—that the Children’s Therapy Act seeks to address. But even knowing that grassroots-level legislation takes years to get passed, the complete and total lack of responsiveness from the political leadership was disheartening, to say the least. For weeks on end, we deluged the speaker’s office with calls to assign the bill to committee. We called senators, trying to get someone to listen to us. No response.

I contacted a former state senator, hoping for advice on who might be open to listening to us. Instead, I heard how insurance is not supposed to cover ongoing needs; insurance is supposed to be for short-term, emergency care, and we should not be putting mandates on private companies. I wanted to strangle him. Political philosophy is all well and good, but not when it holds us hostage. Because folks, there is not another good option.

A health insurance company can negotiate a rate with providers. A family can’t. It’s not because the therapists are unwilling; it’s just not allowed. That means that where an insurance company pays a fraction of the fee, families pay the whole freaking thing. Every time.

We know of people who have sold their homes to pay for therapy. People who have turned down good jobs, preferring to stay in low-paying ones, because Medicare does cover therapies. People who have gone into debt to meet their child’s needs.

How is this just?

This is why I put my support behind federal health care. Because as of 2014, it requires that insurers provide coverage equally across the board, regardless of “pre-existing condition.”

Now, I know the arguments. High taxes, socialized medicine, general governmental incompetence. I get it. I do. I’ve heard from people who lived in Canada and loathed the system, saying it was absolutely useless. But I’ve also heard from people who lived in Canada and said it was fabulous. Likewise for people in Europe, who come here and are appalled by our for-profit health care system. No system is perfect; somebody’s always going to be upset. But I truly, honestly believe that most of the backlash against “Obamacare” is about political power and fear of change.

What about abortion? Well, here’s the thing. Abortion, horrific and loathsome as it is, is not going to be legislated away. Not now, anyway. We as pro-life Christians would be far better employed changing hearts and minds than banging on a door that simply cannot be broken down right now. Through Theology of the Body, through natural family planning, through support of unwed mothers, we can change the world. Because where hearts and minds are, laws will follow.

One final thought. Parents given a diagnosis of Down syndrome during pregnancy are presented with a world where their child will be discriminated against every day. If parents can’t even trust their health insurance to help them get needed care for their child, how can we be surprised by a 90% abortion rate?

Young Love: A School Bus Motherhood Moment

Motherhood Moments

It’s taken two weeks to gather the photographic evidence and the permission to share, but I hope you’ll agree it’s worth the wait. Quite possibly my favorite Motherhood Moment Ever.

They’re buddies at school, two adorably sweet children who speak the same language, a language without words. This summer, they’ve ridden the school bus to and from school every day side by side. And one day…this.

Every morning, they giggle on the way to school.

Every afternoon, she sleeps, he keeps watch.

Oh, sweetness. Sweetness indeed.

Mamarazzi Mondayyoucapture 4-1

Published in: on July 15, 2010 at 4:03 am  Comments (17)  
Tags: ,

The “R” Word: why it matters

When our family first stepped on the shores of Holland, we used to roll our eyes when people fussed about language. You don’t say “Down syndrome child,” you say “a child with Down syndrome.” You don’t say “disabled,” you say “differently abled.” It was a lot of PC crap, we thought. Except for this one word. The “R” word. A word that was part of our daily language, an expression of contempt for normal, everyday things that got on our nerves.

Come on, you know you’ve said it, too. That’s retarded.

That expression was stripped from our vocabulary almost instantaneously, because all of a sudden a horrendously ugly word had personal meaning for a child we loved more than life.

But for a lot of people we know, without that connection, that phrase is still very much a part of their vocabulary. I’m here to say: Stop using it. It matters.

Here’s why it matters.

In the dictionary, “retarded” means “slowed.” But when you use the expression That’s so retarded, it doesn’t mean “slow.” It means stupid, incompetent. It means You are an inconvenience to me. It means you are an object of my contempt, beneath me, and undeserving of being treated with respect.

In the past few weeks I’ve seen it used twice on Facebook. One person used it to describe a hotel clerk that gave her poor customer service. Another used it to describe a sociopolitical situation he didn’t like. In neither situation did it have any connection with something slowed or delayed. It was an expression of dismissal and contempt.

And here’s the problem, folks. Even though you aren’t using the word “retarded” as a derogatory title for a person who is developmentally delayed, somewhere deep in your psyche, the original target of the word is still there. You still know about mental and physical retardation. At a visceral level, you still connect this word with deformity, with “other”-ness—that is why the expression that’s retarded holds such power of contempt.

Now, don’t fuss at me for assuming that I know what you’re thinking. I know this to be true, because I’ve been there.

And when that word is consistently used as an expression of contempt, it belittles the whole spectrum of meanings—the ones you overtly intended as well as the ones connected with it at a subconscious level. That is why using “the R-word” wounds. That is why it matters. Please, excise this from your vocabulary. There are enough walls between “Them” and “Us” as it is.

Published in: on July 5, 2010 at 6:10 am  Comments (11)  
Tags: ,

Moments of awe

Vote icon 

Two weeks ago, I was doing market research on Parents.com, looking for writer’s guidelines for personal essays, and stumbled upon their cover model contest. On a lark, I entered Julianna, thinking, We need beautiful kids with special needs in the spotlight.   

Vote icon 

One week ago, I got an email from Parents nudging me to share the link, to get people to “vote” for her. Cringing at self-promotion, I put it up on Facebook and Twitter, and sent it out to, oh, pretty much my whole address book.   

Vote icon 

On Saturday, I received this email from my s-i-l in St. Louis:   

“Well your email about Julianna made it back to me through work!!  How incredible is that?!?!”   

And I started reading backwards.   

From: (removed)
Date: June 26, 2010 7:33:24 AM CDT
Subject: Fw: Consider this

Hi everyone,
 
There is a woman in Missouri who has entered her child into Parents magazines photo contest. This adorable girl also just happens to have Downs syndrome. Would you consider voting for her in this on line contest (see below) What a wonderful way to show the true beauty of all children!
 
— On Sat, 6/26/10, (removed) wrote:
Date: Saturday, June 26, 2010, 6:40 AM
I hope you will take a moment to click and vote.  There is a mom in Missouri who has entered her darling daughter with Down Syndrome into a cover model contest.  I don’t know about you, but I have never seen a cover model with a disability and I think it is high time!  BESIDES, she is totally adorable!
—– Forwarded Message —-
 
From: (removed)
To: Missouri Planning Council
Sent: Fri, June 25, 2010 5:43:52 PM
Subject: [MO_Partners] Consider this

Please read below and vote if you agree with Kate. 

—–Original Message—–
From: (removed)
Sent: Friday, June 25, 2010 10:51am
Subject: FW: Gimme a click! 

Would you please pass this along to your list serve and anyone else who may be interested. Kate is a friend (and also generously allows one of our trainees to shadow her family) who has submitted her daughter’s photo to Parent’s magazine contest for their cover picture. Julianna is a beautiful little girl who happens to have Down Syndrome. I encourage you to go to the link below and vote for one or all of the photos of Julianna – Let’s get her on the cover…. Thanx, (removed)  

And then, and only then, my message:  

Mamarazzi alert! :)

I feel self-conscious for even asking this, but hear me out. Parents Magazine is holding a contest for cover models for their magazine. And it occured to me that there is a sad lack of children with special needs put in prominent places, which contributes to the stigma of being “different,” and the barreiers that keep people from seeing the beauty in our children. 

And so I uploaded pictures. Now I need people to “vote” for Julianna. Click here and click the “I like this” button. There are four pictures in the album to choose from. 

I know it’s lame, but I think we need kids with special needs in the spotlight. So if you feel compelled, please feel free to pass this on. Thanks, everyone! 

Kate Basi
Proud mama to Julianna, age 3, Down syndrome 

There is one thing, and one thing only, left to say.

YOU PEOPLE ROCK!!!!!!!!!!!!!!!!!!!

Gratitude List for the end of June…
#220. My telephone pacer.

(Alex paces when he talks on the phone)

#221. My comic strip reader

Just like Daddy (except Daddy doesn't read them upside down)

#222. The little ones’ delight in passing car time together

This is the picture I couldn't get last week...

#223. A chance for Alex to share a love of all things green and growing with his grandma 

A moment for my mother and my son to bond over growing things

 #224. Baby in Grandpa’s truck

Watch out, world! Baby at the wheel of a Big Honkin' Pickup!

 #225. Cuteness, especially when it needs no explanation

#226. Watching my family delight in a much-needed rain shower

#227. Homemade Marble Cake

Join the…

Mamarazzi Monday

holy experience

Published in: on June 28, 2010 at 4:08 am  Comments (4)  
Tags: ,

Two Peas in a Pod

(or, What Happened Because of a Tire, Part Two. )

Motherhood Moments

Post-tire adventure, we piled back in the car and started down the highway again. Now Alex was the crabby one (he wanted the McDonald’s Playplace, not Pizza Hut), and this time he was the one who conked out immediately. Meanwhile, in the captain’s chairs, Julianna and Nicholas struck up an antiphonal chorus. Julianna clapped, Nicholas giggled. Nicholas clapped, Julianna giggled. Julianna squealed, Nicholas giggled. (He has such an adorable laugh.) Nicholas made raspberry noises, Julianna giggled. They stretched their arms across the divide between their chairs and shook hands, and both of them would collapse into hysterics simultaneously.

(Sorry for the poor exposure...it was the best I could get)

It was ten miles of entertainment for Mommy and Daddy, until Nicholas conked out mid-squeal and Julianna waved her empty hand at Nicholas, wailing, “Euh, euh!”

My little ones are two peas in a pod these days. As Nicholas barrels down on his big sister’s developmental age—not to mention her weight and height—they become more and more aware of their compatibility.

But of course, compatibility at this age also involves conflict. As the ranking child, Julianna must keep some measure of control. She likes to teach him…

"More"

…and lead him in chorus…

…and there’s a healthy dose of torment in their relationship, too. If he gets out of line (which means, uh…I don’t know, he looked at her funny?), she “hugs” him.

Yeah, like that. Involving lots of screaming and wailing from him, and a sly smile from her.

Hold onto control as long as you can, little girl. I estimate you’ve got six months, max, before he barrels past you, and starts dragging you along the path of developmental milestones.

7 Quick Takes, vol. 83

1. Last night I started a Wilton cake decorating class. It’s very interesting to see how, uh, passionate, people get on the subject. Myself included. There could have been a knock-down, drag-out fight over icing recipes in the aisle of Michael’s last night, but we all managed to control ourselves. :)

2. As far as I’m concerned, the greatest mystery of cake decorating is this: How do you make that icing you actually WANT to eat? Turns out, that’s not on the syllabus. Because “we’re not making things people are actually going to eat,” someone said, and my jaw hit the floor. Uh…color me weird, but I do expect people to eat what I make…otherwise what’s the point?

3. But here’s the part I really don’t understand. As I asked questions about icing, the instructor gave me this confused look and said, “No, this isn’t the icing you use to frost the cake. I mean, you can, but no, when you go buy your box mix” (!!!!!) “you just pick up the can of frosting that goes with it.” (!!!!!!!!!)

And fully ¾ of the class nodded their heads.

4. Call me crazy, but I just don’t get it. You’re buying expensive products like specialty sugar, meringue powder, and concentrated gel colors to make from scratch an icing to make extremely fancy roses, shells, etc. And then you BUY PREMADE ICING to put on a BOX CAKE????? Am I the only one who thinks this is just a little bit, uh, inconsistent?

5. So folks, do any of my esteemed readers know how to make that awesome icing that I could eat all day? They seem to do it at Gerbes and Hy Vee…I keep asking all my cake making friends their recipes, so maybe someday I’ll stumble on one I can’t live without.

6. Okay, I’ll move on with life now. This essay, called “last one picked,” is a telling reflection on that horrifying 80-90% abortion rate for kids with Down’s.

7. And, to end the day on an up note, my book is in the queue. Joy to the World: Advent Activities for your Family is scheduled for release on July 31!

Yes, we’re ahead of the season, but the key to having a restful, rather than stressful, December is planning. It’s not too early to be thinking! JttW is short, and better still, it’s only $6. If you have a young family, I hope you’ll order one and join us in discussion here this December!

Published in: on June 4, 2010 at 5:35 am  Comments (17)  
Tags: ,

The Wooing of Daddy’s Girl

Motherhood Moments

As a parent, you’re not supposed to play favorites. But kids don’t play by the same rules.

Julianna’s been Daddy’s Girl from day one. When her heart condition and the resulting lack of oxygen made her too crabby to nurse, I frequently got frantic, because I was deprived of my surest form of comfort. But she would fall asleep on Daddy’s legs. When she gets upset, it’s not Mommy who comforts her, it’s Daddy. Daddy’s the one who can get her to eat, to respond to verbal cues, to smile for the camera. Occasionally she’ll deign to toss Mommy a few crumbs of affection, but pretty soon all the love goes back to its proper place.

Maybe that’s all this is, too. But as Julianna grows, she seems to be carving out a place in her heart for Mommy, too. Our special time of the day is naptime. I toss her on the bed, which she loves, and we tickle and giggle and sing for a few minutes. She likes for me to lie down beside her.

But I’m also beginning to learn how to coax her out of her moods (and let’s be honest, she has quite a few). Offering to play Libera works pretty well…as does chocolate milk. Is this bribery? Well, maybe. But then, she’s three years old, and unable to tell me what she wants, except by rudimentary methods. So getting her calmed down enough to respond to yes and no is a big thing.

She’ll always be a Daddy’s girl. But I’m just glad to find that there’s room in that adorable little heart for Mommy, too.

Published in: on June 3, 2010 at 5:52 am  Comments (4)  
Tags: , ,

Depth of Field

Motherhood Moments

Sometimes we don’t even pay attention.

We spend so much effort looking for beauty in the classic sense that we filter out the budding beauty in the background.

And sometimes we focus so much on what’s waiting down the road that we miss the beauty right beside us.

Right now people see Julianna. She’s cute. She’s innocent. And she’s cuddly (when she wants to be). But ten or twenty years from now, will they still see her? When she’s no longer shielded by the innocence and cuteness of early childhood, will they focus on her?

Or will their vision of her blur, their eyes slide past her? Or worse—will they see her, but not her intrinsic beauty? Will they react with bigotry and cruelty?

Last night, ABC broadcast a show called “What Would You Do?” One of the scenarios was the treatment of a grocery store bagger with Down syndrome.

An actor was paid to be horrible to this young man, also an actor, just to see if people would stand up to him.

A few did, with results that made us laugh and cheer (you can find the video here, but you’ll have to look for “grocery clerk abuse”). But most didn’t. And among those who did, almost every one had some other reason to feel passionate about the treatment of those with disabilities. One had a sister with DS. Another was a special ed teacher.

It was kind of a shot in the gut to me, because it was like looking in a time-warped mirror. Three and a half years ago, before Julianna, I probably wouldn’t have chosen confrontation, either. The issue just didn’t touch me in a deep place.

These days, that’s no longer the case for me. But I am painfully aware that it is the case for many, perhaps most, of you.

This, then, is my Motherhood Moment today: a plea to each of you who read this: let your “depth of field” include everyone you meet. Be ready when, someday, you come across the occasion of cruelty and bigotry to anyone, but especially to people like my child. When you’re picking your battles, choose this one, in whatever small way you can. Don’t slide your eyes past, and “mind your own business” in convicted discomfort. Speak up for God’s children.

youcapture 4-1

Published in: on May 20, 2010 at 7:03 am  Comments (9)  
Tags: ,

Repost: Crisis at the Circulation Desk

It’s just one of those days, folks, so here’s a repost from early of 2009, a few short weeks before Nicholas was born:

***

Scene: the circulation desk at the public library. Behind the counter, a young man and a middle-aged woman. In front of it: two very pregnant women, with small children in tow.

A discussion ensues, instigated by Alex (who else?), about babies in mommies’ tummies. We share due dates, smiling and laughing, because our daughters were enthralled by each other only a few minutes ago at the play kitchen set.

It begins when Alex says he thinks we need five babies. (You might notice, BTW, that he’s increased his ideal family size in the last few days. hehehe.) The woman behind the counter says something like, “Or you could have eight at once, like that one woman. It’s just sickening.”

“W-well,” I hedge, knowing these are deep, dangerous waters, and I don’t really want to navigate them, “I’m all about big families, but not like that.”

Snort. “I’m not all about big families. I believe in zero population growth.” Sardonic shrug; then, realizing she’s overstepped the bounds of common courtesy: “But to each his own.”

Well, okay, then.

Do I say, Excuse me, you do realize you’re talking to pregnant women? Like, on the verge of delivery pregnant?

Do I say, children are a blessing, regardless of how they got here, and no, I can’t stand what Nadia Suleman’s doing either, but the children are holy?

Do I say, siblings are a gift to each other?

Do I say, yes, we need to take better care of the earth, but not at the expense of having children, who are quite possibly the best thing that can happen to a person, because they make you grow, and teach you to view the world in a whole new way?

Do I say, So where does my daughter with Down syndrome fit into your “zero population growth”? Does she even get a place in your utopia?

No.

I draw a stunned blank…I smile weakly and say nothing at all. I pinch my lips shut, put the kids’ books in the cloth library bag, and head out the door. And I comfort myself by thinking that I get to teach my kids to value family, and children, and the earth…

…and that nothing I might have said would have made any difference anyway.

Published in: on May 10, 2010 at 5:47 am  Comments (2)  
Tags: , , ,

The Magic Chromosome

“There is magic in that extra chromosome, I tell you. Magic.”
–Kelle Hampton

I don’t know how she does it.

Everywhere she goes, people see her.

This seems like a stupid thing to say–of course people see my daughter. But in our quest-for-the-perfect-body-without-sacrifice, grab-a-Botox-shot and erase-your-wrinkles world, we don’t really see people with disabilities. Our eyes slide past, because we’re uncomfortable, or because we don’t want to be rude. Even though ignoring is its own form of rudeness. We build walls between Them and Us. (And I do mean “we.” Even now, I sometimes do it, too.)

Julianna is a one-toddler wall demolition girl. Somehow, she walks right through them.

If you don’t have a connection with Down syndrome, this post is one more set of syrup-sweet platitudes. I used to skim, or skip things like this altogether. How can I make you see my girl the way you see the children of every other friend, neighbor or acquaintance?

Aside from the ordinary triumphs of each dearly-bought stepping stone, these are my favorite things about Julianna:

Sympathetic cry-er (you know…as soon as a sibling starts wailing, her face screws up and she follows suit).

Bibliophile extraordinaire. She’s not picky. Given the chance, she’ll choose Child of the Moon or Brown Bear–better yet, a scrapbook–but if they’re not available, she goes for whatever’s close at hand. Batman, Lego instruction manual, hymnal, phone book (I kid you not).

Mommy wannabe. Right down to sitting in front of the computer and making a Really.Big.Mess.

Tomboy and girly girl–a girl after my own heart. Alex can’t stand getting dirty. Julianna? Glories in it. Butt planted in the creek. Mud on the legs. Fingers in the mouth.

Miss America in training. Walking is her favorite activity, best enjoyed when pushing a toy. But if we’re someplace where there are people, but no push toys, she waves. Loudly. What do I mean by that? I mean she tears through the available space, waving and yelling, “AAAAAAAAAA” (translation: “Hi hi hi hi hi hi!”). And everyone smiles.

She’s a button-pusher, “for good or for evil,” as Gandalf would say. If she wants to see you ticked off, she knows just how to do it. In two seconds. But when she wants warm fuzzies, she can do that, too.

One word: Hugs.

 Oh…my…goodness. Nothing so heavenly as those plump little arms…squeezing. I’ve waited three years for that sensation. I get goosebumps.

The not picky audience member. She loves music. Any organized sound will do. Jackhammer. The roll call bell at the Capitol. As long as it’s not so close that it deafens, she cheers.

And she does it for “yay,” too. Yay for the food. Yay for Daddy’s homecoming. Yay because everyone else is. She doesn’t need to understand why she’s applauding. She just does. It makes her happy. And at the baseball game, when she claps and yells for five seconds longer than everyone else…people see her. And smile.

But my absolute favorite moment was a school bus moment. One afternoon Miss Holly, the driver, told me that the bus barn was moving Julianna to another driver’s route in the mornings. “Okay,” I said, “great, thanks.”

“Well…” she said, and when I saw the crestfallen look on her face–crestfallen for losing my daughter from her afternoon–my heart went, thump.

Oh, my beautiful angel. What wonders will God work through you?

Mamarazzi Monday

Published in: on May 6, 2010 at 5:33 am  Comments (10)  
Tags: