Kathleen M. Basi's Blog, page 48

Down Syndrome Is Normal

At some point, I stopped writing about Down syndrome.

The first two years, it was always front and center. Five therapies a week. We hardly went anywhere, between naps and home visits.  Our wonderful PT took to meeting us at the library or the park so Alex wasn’t confined to home just because Julianna needed therapy. And then there was the medical drama. Julianna had respiratory issues that meant every cold seemed destined to morph into at least an overnight observation in the hospital.

And then she started early childhood special ed, and there were the cute bus moments. And the long discernment of whether or not she’d be able to attend Catholic school with her brothers.

But just like every other child you add to your life, things settle in at some point. Julianna outgrew her respiratory problems and got in the swing of school, and suddenly one day, we found that Down syndrome had sort of woven itself into the fabric and become nothing more than normal life.

It’s not like we’ve forgotten we have a child with Down syndrome. But it’s no longer the single factor that controls every facet of life. It’s just the thing we have to keep in mind when we’re thinking about interactions with Julianna–just like we think of the words “strong-willed” when we are interacting with Nicholas. Both those descriptors require us to adjust our reactions to situations as they come up, but it’s not something that requires a plethora of blog posts anymore.

Down syndrome is normal.

Down syndrome is an almost-8-year-old girl who can still wear all her size 5 clothes, but is really tired of them, only she won’t tell us so, because she’s just not built that way. Instead, she goes into the drawer full of clothes we’re banking against future growth and dresses herself in a pretty red sundress on a 20 degree day. And it actually fits. And because she loves it, and took the initiative, I put a poncho on her and let her wear it anyway.

Down syndrome is a life enriched by Frozen, Tinker Bell, music, pizza, ice cream, and pasta. Down syndrome is a girl who rides a white-and-purple bicycle with streamers and a light-up basket (and training wheels)–all by herself. Down syndrome is getting a purple umbrella with her name on it for Christmas (painted at Magic Kingdom) and screaming with excitement. It is birthday parties and playgrounds and swings and the Wii. And if you’re thinking, “But that’s all so normal,” well….that’s exactly my point.

Now, I must be honest: Down syndrome is also agony in math. A.Gon.Y. It is a paraprofessional and speech therapy and special instruction, adaptive P.E. and thousand-dollar shoe inserts (good health insurance is a lifesaver).

But it’s also a fan club that you would think follows her around if it wasn’t for the fact that you’ve finally realized she builds it on the go. (I really think she’s the most popular student at her school.) It’s a girl who’s still small enough to be picked up and snuggled at age eight…and who loves to do it, just because she knows it turns Mommy into a pile of goo.

Most of all, it’s a chance to have my world, and my heart expanded, and an invitation to cast wider the net of what constitutes “normal.” Because really, who got to decide what is “normal,” anyway?

 

Sweet Snippets, illustrated with random cute pictures

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Julianna is sitting on the couch with the Night Before Christmas book her grandparents Basi recorded for the kids. “Hey Bruvvers! BRUVVERS!” she hollers. “Come! Here!” Deep in Lego Land (AKA the back bedroom), the boys don’t acknowledge her. But Julianna is not to be deterred. She clomps up the stairs, never thinking how much effort it takes her to do so, and yells, “BRUVVERS!!!!” And before you know it, they’re all sitting together on the couch, listening to their grandparents read them a story…just because Julianna wants to share.

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Michael, sitting at the table on Epiphany Sunday painting a wooden train with Daddy, hears a song start on the CD player. “O Holy Night,” he says, even before the intro finishes.

“Oh yeah? That’s O Holy Night? Who’s singing it?”

“Santa Claus.”

I think I might die of sweetness.

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Every year I spend about a month, in the midst of Advent busy-ness, thinking about New Years resolutions. This year, nothing really coalesced until I was writing a column on the Virgin Mary for Liguorian, and I realized that what I need most is not more things to do but instead a more peaceful, contemplative and above all grateful outlook on life. Power struggles with Nicholas deplete my resources, and I often find myself in, well, let’s say a very negative funk. So I simply chose a word for this year: treasure. As in “Mary treasured all these things, reflecting on them in her heart.” I treasure plenty of things in my heart, but they aren’t necessarily the right things.

And although I am a firm believer in concrete, measureable resolutions, I think this is the right path for me this year.

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So things are a little more intentional in our house now. At least so far. I thought back to my childhood and remembered how we each had two nights a week where we had to do dishes. But I couldn’t stop there. Maybe because my family was all girls and we were not such doggone messy eaters, Mom didn’t make us sweep the floor every night. But the Basi family needs that. So I set up a chore chart:

So far it’s going reasonably well. The kitchen is definitely cleaner.

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The other change is that Fridays are family game night now. The other day we played an entire game of Life. It was wild, let me tell you. Michael wanted to buy Alex’s houseboat, and would NOT stop asking. You know how persistent a three-year-old can be; imagine one who can delude himself that he hasn’t gotten his way because nobody understands him. He just kept saying over and over, “I want, to buy, Awex, house.” Over…and over…and over…for most of an hour. Nicholas and Alex were in a battle to the death. Julianna wanted to snuggle, which meant every time we let her spin, she had to unfold all those long, skinny, uncoordinated limbs, and everyone had to guard the board and all their various pieces of paper. And of course, the younger three all short-circuited within five minutes of each other, and their restlessness meant guarding the board and papers all the time. It was fun, up until then. But wow, it was wild.

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Michael passed out on the floor of Crown Center. Does this nap win us parents of the year award? :)

The days I have been dreading for years have arrived. Most of the time, Michael thinks he is too big to be chewed or have his belly kissed. I am trying very hard to respect his perception of himself as a big boy. In the grand scheme of things I do want him to be a big boy, not a baby. But oh, I’ve been dreading this day ever since I knew he was likely to be the last.

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The kids went back to school this week. After taking off almost the entire months of November and December from “revenue-generating” writing (for now, fiction is a labor of love and faith), I have a heavy load of deadlines. I spent this week’s school days in a fever of focus and productivity, but there is so much more to be done. So I sign off with links to my earlier posts this week for anyone who is visiting from the linkup: Consent is NOT Sexy, and The Day We Lost Julianna.

Happy weekend to all the Seven Quick Takes people…and to everyone else!

The Day We Lost Julianna

The line for the Holiday Train was an hour long, stretching the entire length of the main concourse of Kansas City’s Union Station.

We figured we’d survived an hour-long wait for the Peter Pan ride…in the cold. Surely the kids could handle an hour-long line inside, where it was warm.

But we hadn’t prepared as carefully as we had at Disney World. We’d had to leave later in the day than we wanted, because I’d had to sing for university graduation first. I’d expected Michael to sleep on the road, but he didn’t. And now, he was tired. And restless.

Christian went off to do something–I don’t even remember what, now–and I wrestled Michael as he twisted in my grip, sat down, pulled me one way, pulled me the other way. And then I did the requisite kid-count.

Julianna was gone.

I did not panic. Julianna may be a wanderer, but her wanderings are generally predictable. She has a consistent set of places she wants to go visit, mostly consisting of a) books, b) music, or c) doughnuts. The main problem is that she doesn’t answer when you call.

But we were not in a familiar environment. Still, I really expected that even with the crowd around us, her bright red coat would pop out at me within ten seconds.

It did not.

I pulled out my emergency-only cell phone and called Christian. Maybe he’d taken her with him and I just hadn’t paid attention when he told me.

No answer.

“Alex, hold Michael’s hand, and do not let him go. Nicholas, stay with Alex and do not move. I will be right back.”

I stepped out of line and into the center of the concourse to do a slow 360, sweeping the crowds.

Nothing.

I got back into line, retrieved Michael’s hand, and tried Christian again. The woman behind us got a description from me and went off to search. She returned empty-handed. And then I saw Christian walking toward us.

Without Julianna.

I was not afraid that she had been kidnapped. I’m well versed in the real facts about kidnapping; kidnappings by strangers are extremely rare. Besides, call me jaded, but I do not believe the random kidnapper type is going to pick, of all kids to snatch, a child with a clear disability.

And I couldn’t imagine that Julianna would actually try to leave the building. So she had to be somewhere in Union Station.

Only…Union Station is big, and there were thousands of people there that day.

Christian took off and spoke to the ladies handling tickets for the holiday train. I held the place in line for a couple of minutes, thinking furiously. Here, in this place we’ve been a couple times, where would Julianna be most likely to go? Science City? Maybe…if she remembered it was there. The Christmas concert being set up across the way? I could see she wasn’t there. That model train display way down at the end of the concourse? Much more likely.

I waved at Christian, sent Nicholas with him, and took the other boys with me. We moved slowly down the concourse, my brain on 100% observation, looking for that red coat in the crowds waiting for the kiddie train, the crowds waiting for the Holiday Train, and the crowds just milling around.

I saw a guy in a uniform. “I’ve lost a child,” I said, and even I could hear the stress in my voice. “Brown hair, glasses, about this tall, with a bright red dress coat on. She has Down syndrome.”

He pulled out his phone (or walkie talkie? I don’t remember now) and passed the information on.

The whole Union Station security team was now on alert and looking. I told him where I was going and dragged the boys into the crowds funneling into the small door to the model train room. I pushed and shoved our way most un-politely into the model train room. Which was also very, very crowded.

And very, very empty of a little girl in a red coat.

That was about the time the question rose in my mind: What if we DON’T find her?

We circled through the room and came back out the far side, and then…as we passed the back side of the kiddie train…I saw her.

In the back seat of the kiddie train.

The kiddie train that costs $5 to ride.

Lounging back in her cute red coat like it was just a day at the beach, not a care in the world.

We all found her at the same time, as it turned out; the security men waved frantically at me as I raced around the side to the entrance to head her off when she got off the train, and Christian converged on the spot simultaneously, having been called by security.

“How did she even get ON that train without a ticket?” I said.

The operator shrugged. “She just sort of walked in like she owned it.”

Face palm. That is quintessential Julianna.

As you might imagine, Miss Julianna was not allowed to let go of a parental hand for the rest of the day.

And we never did make it to the holiday train we had driven to Kansas City to see.

But we did discover something important–that far from graduating from the run-away stage, Julianna is growing more willing to wander as she grows in age and experience. Which means there are necessary changes on the horizon in the Basi household.

Consent is NOT Sexy

Photo by ctrouper, via Flickr

“Consent Is Sexy.”

I swear, that’s what the t shirt said. And I think the woman wearing even thought it was a good slogan.

I wanted to hurl.

First of all, I have to preface my comments by saying: I get it. The state of relations between men and women sucks. The way we talk to each other sucks. The way we talk about each other sucks. The humor about sex and relationships sucks. The idea that women even have to worry about being violated? Sucks.

But really? “Consent is sexy”? That’s the standard we’re shooting for? As long as they get permission, that’s enough?

Really?

Women! Wake up! Just how low are we going to set the bar?

There’s a truism about expectations. I’ve mostly heard it in the context of education: that people will live up to your expectations, or down to them. If that t shirt is any indicator, the bar we’ve set for how we expect to be treated is so low, it might as well not exist. As long as a guy doesn’t rape us, we’ll flatter their ego and call them sexy.

Really?

On the scale of sexual attractiveness, consent doesn’t even register. Consent is a prerequisite for claiming to be a man. If we women, in the name of sexual liberation, have chosen to fling ourselves at the feet of men for nothing more than “consent,” then we have brought ourselves very, very low indeed.

Consider this:

Among men who are part of a couple, 75% say they always have an orgasm, as opposed to 26% of the women. And not only is there a difference in reality, there’s one in perception, too. While the men’s female partners reported their rate of orgasm accurately, the women’s male partners said they believed their female partners had orgasms 45% of the time. (From WebMD)

So not only do the men get more out of sex, they’re also clueless about how little their partners get out of it.

And this is okay because…?

If a man wants to claim the moniker “sexy,” he needs to do way, way more than just ask permission. I realize this is a radical concept in the modern world, but sex is the capstone of a relationship, not an audition for it. Relationships between men and women have always been troubled because we’ve failed to make the effort to understand and respect each other for what makes us different from each other. But in the modern world we’ve taken it to a whole new level by making sex the end-all-be-all of existence.

And if WebMD is right, women haven’t gotten much out of the deal. Why are we so concerned about our God-given right to have sex with as many people as possible, without consequences? What are we getting out of it? Has anyone ever stopped to ask herself this question?

Whenever I see dumbass slogans like “Consent is sexy,” hear the way women talk about their husbands to other women, see statistics like the above, I’m torn between gratitude for the amazing man I married and a desire to start screaming at my fellow women for accepting any less.

Here’s another snippet:

Women were more likely than men to show inconsistency between their expressed values about sexual activities such as premarital sex and their actual behavior.

I can’t say for sure, but I think that means women say they recognize that sex is the capstone, not the audition, but their behavior says they’re willing to let men dictate the terms of the relationship.

So much for women’s liberation.

Down deep, I don’t think any woman really thinks this is okay. The focus on romance in fiction aimed at women indicates that we are all seeking authenticity, understanding, and dare I say it, something holy in a romantic relationship. Or perhaps a better word would be transcendence: something in our partner that gives us a glimpse of a reality beyond what we ever thought was possible.

To my fellow mothers–and fathers, too–I say this: we are the ones who form the next generation of men to view women with respect…or not. And too often we shirk our responsibility to point out what is wrong in the world, simply because it’s awkward. We’re so uncomfortable with our own brokenness where sexual matters are concerned, we feel unable to address the subject with our children.

But we have to get over it. We have to confront the ugliness within, look for healing within ourselves, and summon the courage to tell our children–beginning at a very young age–how the world is supposed to look.

Because we can’t let the bar fall any lower than it already has.

 

Back In The Saddle

Photo by Khanh Moong, via Flickr

It’s been eighteen days since I posted a blog.

It’s been relaxing not to worry about those rolling deadlines. I’ve been able to focus my energy on writing when there was time, and when there wasn’t—which was often—I didn’t feel anxious or guilty about it.

In these eighteen days, I have painted a toy train, played Disney I Spy, six rounds of Tell Tale, half a game of Life, put stickers on a page and helped Michael tell stories about it, danced with Julianna, scrapbooked half our Disney trip, and read a novel and a half. I shrugged off regular writing and grabbed forty minutes where I could, but mostly I spent time with my family. We purged the toy room in the basement and made a lasagna dinner for the nurses working in the PICU on Christmas. I watched eleven episodes of Once Upon A Time on Netflix (mostly while folding laundry—I haven’t completely abandoned my multitasking ways). I stayed up late visiting, and I slept in three times. Which may not seem like much, but those were days my family slept in, too. I gave up something like seven hours of uninterrupted writing time for it.

And now it is a new year, and it’s time to return—to work, to school, to the beautiful, but let’s face it, stressful grind of routine.

I’m chomping at the bit to get back to writing, but I don’t feel ready to start blogging again.

But I’m internalizing a well-worn truth lately: that every up side has a corresponding down side. When air travel replaced ocean liners, we gained huge amounts of time, but the trad-off was jet lag. Mobile phones have given us convenience and efficiency, but the sound quality sucks and work never, ever ends. It is what it is. You can either gnash your teeth about the cost until you fail to recognize the stuff…or you can shrug, say it is what it is, and get on with life.

Despite the bickering, it’s been a lovely Christmas break. I’m ready for a new year. 2015, here we go. We’re off and running.

It’s That Time

I take a blog break at the end of every year, but it’s clear to me that this year, I need to start it a week earlier than usual. Have a blessed and peaceful end-of-Advent and Christmas, and I’ll see you all back in the new year.

Moments

And then, in the course of time, old rituals pass into new.

My baby, no longer a baby, dresses himself now, refusing help until he’s worked his chubby arms into such a snarl within his fleece sweater that he can’t move. He runs for the van yelling “I, buckuh, mysef!” And he does it, too. Five-point harness, fastened by a three-year-old.

At the dinner table, the kindergartener waxes enthusiastic about his Christmas program this weekend, trying to give us a blow by blow of rehearsal.

My firstborn, my mini-me, shows by subtle body language that I’m no longer welcome to tousle his hair or kiss his cheek in public. When he puts the slips in the Advent calendar, he says, “Do I have to sit on that Santa’s lap? Because I know he’s not really…” And then stops. And I say, “Let’s have a conversation about that,” and he giggles and says, “I think I know what this is about.” Very suddenly, one day, “Mommy” and “Daddy” vanish into “Mom” and “Dad,” without explanation or ceremony, and we wonder if someone at school mocked him for hanging onto that diminutive for so long. But we don’t ask.

And at night, my girly-girl daddy’s girl now begs, “Mommy, I want, ssss-nuggle!” It’s a hard word for her, but she manages it. I lie down with her, with Anna and Woody and Sparkly Bear too, and she says, “Mommy, will you sssing Meh-wree Poppins?” And I stroke her soft cheek and sing softly, “Stay awake, don’t rest your head…” while I hear the popping of saliva as her cheeks pull back into a smile, followed by a giggle. It happens at the same point in the song every night, and I have no idea why.

Many things do not change. But these new rituals whisper to me, calling me to focus in on what still remains: the baby skin, warm and silky even as the child inside the skin asserts his independence. The tender heart that still wants to snuggle in private, even if he’s too big to do it publicly.

Things, both old and new, to cling to as children bicker and madness ensues, especially in the runup to Christmas.

When Advent Is Not Peaceful

Photo by DonkeyHotey, via Flickr

We are approaching the midpoint of a season meant to focus on peace and preparation, yet the moment my children get in the van in the school pickup line, they are at each other’s throats. I lose my temper quickly these days, thanks in part to cyclic hormones, in part to the busy-ness of the season, in which every single day brings another note or email from one school, class, or room mother asking for more X, Y, or Z, and in part to flying down the hall five or six times a night to soothe the preschooler for whom a cold signifies the eternal annihilation of all mortal existence.

The news greets me every morning and every hour on the hour with news of how much we proved ourselves not to be “the good guys” in the way we treated our prisoners, with news of protests and violence and name-calling on both sides of every issue, of further proof that none of us, myself or anyone else, is sufficiently well-informed to be certain that our opinion on the issues at hand is undisputably and irrevocably “right”…although we all treat them as if they are. My Facebook feed fills up with tirades and rhetoric that denies all possible rational disagreement. People go on national TV and call others “stupid,” and elected officials return the favor with pleasure.

And it feels to me that this Advent, no one is even making an effort to pull back, to breathe, to seek the cool breath of the Spirit that could guide us through this mine field of real problems. We have this bizarre parallel existence going on: the one filled with shopping lists and office/school parties and the one in which we edit our intake of the news in order to confirm what we already believe–to ensure that we will never, ever have to consider that the other side might have a rational argument, too.

I have no pithy wisdom to wrap up this litany. If I say I grieve over it, I sound holier-than-thou, and it’s eminently clear to me from my own short fuse that while I stay out of the public debates, I am as culpable as anyone else.

I suppose, then, that this is my call into the darkness, a call for self-examination, and for change. For conversion, as we ostensibly prepare for the coming of God made human.

Frozen Is Taking Over My Life

Frozen is taking over my life.

Which I suppose should not be a surprise, considering that a) I have a daughter, and b) we just visited Disney World.

Incidentally, we did NOT stand in line to meet Anna and Elsa. We did chortle vindictively every time we rode the carousel, watching the “stand by” clock next door oscillate between 105 and 140 minutes. Who would DO that???? we kept asking each other. No, this was some girl we bumped into at the Christmas store in Downtown Disney. But Julianna nearly shot into the stratosphere, she was so excited.

We were kind of late to the Frozen party. We took the kids to see it in the theater and we thought it was a great movie. Then, of course, the kids began singing That Song–or at least their faulty memory of it–twenty times a day for the next ten months, in combination with the Lego movie theme (surely the worst song ever written) and “What Does The Fox Say?” And since That Song is a phrase you use all the time in real life, people were constantly bursting into song at random intervals, thinking they were being funny. I found it so annoying, I kind of put a wall up around the movie.

But I downloaded the soundtrack for the road trip to Florida, and by the time we got home I was as big a fan as my kids.

The music is really good, first of all. Obviously the songs are the wormiest of ear worms, but the lyrics are clever (winter’s a great time to stay in and cuddle, but put me in summer and I’ll be a …………..happy snowman!), and I love the rest of the soundtrack. I think that opening is probably my favorite movie opening of all time. Some of the music is very Disney (which is good, but it really smacks you in the face with its Disney-ish-ness), but a lot of it is quite beautiful in its own right.

The other night as we were supposedly going to sleep, I said something about my heart rate monitor not quite working. “It told me my heart rate was 199,” I said. “I knew that wasn’t right. Then it got frozen there.”

“Did you let it go?” Christian asked.

You know that guttural, back-of-the-mouth sound of deep disgust? Yeah, that was me at that comment.

“Or did you just put up with it because it was the first time in forever?”

Oh, he thinks he’s soooo funny. ;)

On the outside wall of the Christmas store at Downtown Disney. By the way, do you notice how cold Julianna looks? What IS it with this idea that Florida is warm year round? We’ve been there four times in the winter/early spring now, and every single time It. Has. Been. Cold.

But it’s not just the music, it’s the storytelling. Anna and Kristoph are so instantly likable. In my fumbling attempt to write a new novel during November, I never really finished figuring out my characters–I know their stories, mostly, but I’m not inside their heads yet. I begin to despair of ever being able to write characters who instantly have you rooting for them. (“Whoa there, Feisty Pants!”)

And a plot line that takes something very, very predictable and does something very, very special with it.

I actually read the Wikipedia entry on this movie, and took heart from what I found there. Frozen has a long, convoluted history, one that involved a lot of failed attempts and not-quites. It gives me hope that if I keep poking at this fiction thing, someday I’ll figure it out. I know my writing is good enough. I just have to find the right concept and characters that will sell.

In the meantime, I have to make sure I don’t over-expose myself to all things Frozen. The last time I did that, I was in junior high, babysitting a little girl who always, always, always watched The Little Mermaid. I got so sick of it, I ran the other way for twenty years.

What about you? Are you a Frozen fan? Or are you ready to hire the snowman to throw the Arendelle sisters out?

Of Michael, Turning Three

How about a photo-heavy post of Michael?

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Monday morning, Michael started early childhood special ed. It was so different from the last time we sent a child off to preschool at age 3. Unlike Julianna, who was a complete mystery at that age, Michael knew exactly what was going on, and he was all about it.

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This little guy has been chafing at the bit to be a Big Kid for as long as he’s been old enough to process the world. We forget sometimes, because of his speech delay, just how much is going on in there. I was worried that he might pull a sour-face-Mommy-clingy act when it was time to send him off to school, so I started saying, “You start school in one week! Are you ready to go to school like your big brothers and sister?”

He kept saying, “Yes,” but I wasn’t really sure he meant it. But he did. Boy, did he ever. By Thursday, he didn’t even consider it necessary to hug Mommy goodbye. Sniff sniff.

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Age three is the beginning of Early Childhood sped, so this was a big birthday. From the moment Michael realized there were presents involved, he didn’t stop asking for them. The blowing-out-the-candles thing gave him a little trouble, i.e. singed nose hair.

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Do you like the eye patch? That came with the $5 pirate sword we bought him at the Pirates of the Caribbean. He’s very into Captain Hook, and also into Darth Vader–not coincidentally, the two characters his big brothers were talking about/interacting with at Disney World. In fact, he found this helmet in the garage and has been barely willing to take it off to eat. It took me two days to realize he was calling himself Darth Vader. When we stopped to think about it we realized it kind of fits.

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We often joke that Michael has the best head gear. To wit:

This is Alex’s Disney souvenir, bought online after the fact because by the time we decided to buy one of these cold-weather hat-glove combos, they were all out at the parks after a week of decidedly non-Florida-esque weather. It’s the only thing he and Alex fight over. Otherwise they are a mutual fan club.

Love this picture. It illustrates so much. This is at Port Orleans Riverside, waiting for the bus.

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Speaking of head gear…

Michael killing time while we wait for Alex and Nicholas to get regstered as “padawans” at ABC Studios in Hollywood Studios. This was the first day, about an hour before it started raining and the temperature plummeted.

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It’s so hard for me to process that I have been through babyhood and toddlerdom with four children, and now I’m all preschool-and-up. There is wonder in contemplating this, and also some sadness. I just love babies, and Michael’s already asserting his independence from being chewed on.

Speaking of chewing on babies…this is kind of fun. :)

Have a great weekend and a blessed second week of Advent! And go visit other people on the 7 Quick Takes linkup!