Me, My Kid, And Risk Aversion

 

Photo via Wiki Commons

There was an article in the Washington Post last week about middle schoolers and risk taking. Essentially, it said: in order for children to morph into adults, they have to take risks–defined as anything that takes them outside their comfort zone: crazy hair, weird clothes, a new activity–or scarier alternatives like drugs, sex and alcohol. Kids are going to take some sort of risk whether you like it or not; that’s what makes them grow into adults.

I dug into my memory, looking for confirmation of this argument in my own experience, and I came up blank.

I have never liked risk. I have always been a homebody who wants things to stay familiar and comfortable. My mother had to plant a boot on my butt and make me get my driver’s license, for goodness sake. And I was so intimidated by walking into fast food restaurants and asking for job applications, she had to issue an ultimatum before I would do it.

Even these days I loathe risk. There’s a lot of it involved in writing. The obvious is the risk of rejection, but there are many others: the risk of making oneself vulnerable to criticism (can you say “reviews”?), the risk of intellectual property violation, and so on. To me, risk is a nasty but unavoidable side effect of the drive to create.

Hence my continuing problems with anxiety.

Miscellaneous July 018 smallBut all that is just navel-gazing. The reason any of this is blog-worthy is that I have a nine year old who is already broody and moody, teetering at the edge of the adolescent abyss. It seems ludicrous to suggest such a thing, the distance between 9 and 13 being almost half the length of his life thus far. But he’s definitely changing. More to the point, he’s me with an XY instead of two Xs.

In this case, that means he does not like risk. Which is defined as “anything new that does not involve a video game or a mythology-spinoff book.”

He’s eligible to be an altar server this year, but he doesn’t want to do it. When I asked why not, he said he didn’t want to be up in front where everyone was looking at him. I pointed out that nobody is supposed to be looking at the altar servers. I pointed out that he likes acting, where people are supposed to be looking at him. He did not answer. (Whatever that means.)

I don’t like to make the kids do things they don’t want to do, but in this case we thought it was too important not to. This is entry-level ministerial work: service to the people of God. So last night I took him to altar server training.

And you know what? Once they got to the part where they were learning about the items used at Mass–once they got to pass around the huge Lectionary and the heavy, gilded Book of the Gospels and touch the paten and chalice–I could see interest in my son’s  eyes.

That is basically the shape of my own life: parental foot on butt, shoving me out of the nest; insides quivering with terror; followed, at some point (not always right away) by the discovery that I’m having fun.

Blog-sweet boysI had to be forced to take risks, and Alex is shaping up to be the same. In fact, I think I need to harden myself to the necessity of being the foot-on-butt. My risk-averse personality caused me to play it safe far more than I should have in adolescence. Instead of venturing out, I built a safe cocoon around myself. And when it was time to fly the coop I had to be kicked out of the nest, because I didn’t want to leave home. It took me until I was twenty-five to learn to be friends with a man, independent of romantic entanglements, and until I was almost forty to be able to interact with liturgical music colleagues as, yanno, an adult and not a fan girl. I always knew I came into my own much later than I should, but until now it never really occurred to me why.

So maybe I have to stuff that I-don’t-want-my-kid-to-suffer empathy into an iron box and shove it in some deep dark corner of my soul for the next few years. Maybe I have to force my mini-me to take some of the risks I was too scared to take when I was his age. And maybe…just maybe…I can spare him some of what I have suffered because of my own risk-aversion.

Published in: on August 27, 2014 at 7:21 am  Comments (3)  
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The Un-Twinning of the Littles

She still looks older to me, but maybe that's just because I know.

She still looks older to me, but maybe that’s just because I know.

It lingered so much longer than I expected.

When Nicholas first left babyhood, he seemed like Julianna’s developmental twin. I expected it to last just a few months, but the twinning grew firmer and firmer. For over three years, they have kept pace with each other, Julianna managing to stay just far enough ahead in key areas–like reading, for instance–to counterbalance Nicholas’s exploding cognitive and speech capabilities.

I should have realized, when I started referring to “the little ones” and meant Julianna and Michael instead of Julianna and Nicholas, that the twinning had passed at last.

But I didn’t. Not until Friday night, when we had company over and I caught a snatch of conversation between Christian and Nicholas. Christian said, “But Nicholas, Julianna’s older than you.”

“No she’s not! I’m older!”

Christian and I exchanged a look across the room: half amused, half pained. “Nicholas, you are not older than Julianna,” I said. “Julianna is two years older than you.”

You should have seen the incredulous, rebellious look on my third-born’s face.

How in the world did we miss this long enough for him to internalize a wrong-headed view of the world that thoroughly?

Julianna keeps to herself a lot. She’s not big on playing; she likes listening to music and reading books. And swinging. She loves to swing. She’d still rather ride a tricycle than get on her bike, because she’s intimidated by the size–although she can ride it. She’s expected to do chores, but they’re the simple sort: pull the chairs out of the kitchen, bring the dishes to the sink.

Meanwhile, Nicholas is learning concepts and play skills and chore duties by leaps and bounds. We intended to pull the training wheels off his bike this summer; I just didn’t get it done because my work load was heavier than I had realized. He outweighs her, although he’s still marginally shorter. He cleans the bathrooms (though not necessarily very well) and makes his bed. He’s writes as legibly as Julianna (which is to say, not very), although he can’t spell and she can.

And this is all about to intensify, because Nicholas is starting kindergarten in a week. Since we held Julianna back, she’s only a year ahead of him in school.

One of the things that comes up periodically at Down syndrome conferences is the reminder that we have to let/force our children to grow up. Julianna is seven and she thinks she has to have me put her shirt on for her. She still wears her underwear sideways (can you imagine being skinny enough for that even to be possible?). And I know she can’t brush her teeth well enough to be left on her own.

It’s ridiculous that we haven’t tackled independence for her in these areas–but that’s a response to being so crazy-busy. With four kids and a mom who works at home, the practical aspects of life turn into an assembly line: meal prep, morning ablutions, bath time. The focus lately has been on getting Michael to talk. There’s only so much parental effort to go around. Sometimes you just opt to sacrifice independence to the concept of get it all done.

But that’s not good enough anymore. It’s not fair to her. Because she isn’t a “little one” anymore. I have to stop treating her that way.

Raising My Strong Willed Child

baseball portraits 117We don’t parent on our own. Or at least, we shouldn’t. If we try to muddle through on the basis of our own (lack of) expertise, we’re more likely to screw it all up.

So I was very grateful to sit down for a long, focused conversation with a woman I respect deeply. She is raising a child like Nicholas, only she’s much farther along in the process. I’m not sure how to process that conversation except to share what has changed in me since then.

If you’ve been reading for any length of time, you’re probably aware that I’ve focused more emotional energy on figuring out how to deal with Nicholas than all my other children put together–including the one with Down syndrome. A strong-willed child wants to test the limits, and that includes the limits on the limits. For example: if you draw the line in the sand, he’s obviously going to cross it. But he has no intention of abiding by the consequences, either. If the consequence is “go to your room,” you’re going to have to make him go. It’s exhausting. It never lets up.

And if you’re not careful, all of life becomes a battle. And battles don’t leave room for love–the warm fuzzy kind of love, I mean. The battles themselves are an expression of love, but not one that brings you closer together and facilitates enjoying each other’s presence.

I’ve always known I needed to keep calm when dealing with Nicholas. But he’s so good at identifying my buttons, and he goes right for them. (Name this tune: He never hit the brakes, and he was shifting gears.)

Insert note of irony: while I am drafting this blog post, everything I am writing about is playing out around me. Just keep that in mind.

What always made it even harder was the sense that Nicholas had no empathy, no willingness to think about anyone’s feelings or desires but his own. I have often feared that Nicholas is wandering through the world without much of a conscience to guide him. Consciences can be molded but not created, and I’ve spent a lot of energy fretting on that subject.

“Oh no, strong-willed kids usually have a huge desire to please,” my mentor-mother said. I wasn’t sure I bought that, but I went back to my memory with an open mind and I soon decided she was right.

I’m jumping into speculation here, so bear with me. I think part of the reason things often spiral out of control is because parental disapproval weighs so heavily on him. Once he’s on Mommy’s bad side, he feels he’s beyond redemption. So then he acts the part.

That reaction makes no sense to me, but it is what it is. Everyone’s soul smarts when they get in trouble, but different people react differently. What makes Nicholas decide in-for-a-penny-in-for-a-pound is the appropriate response to getting in trouble? I don’t think I’ll ever understand that, because I was…uh, I still am…a person who reacts to criticism with a desire to instantly remake myself in the image of whoever is scolding. That, or stay up for three nights tossing and turning and having ghost arguments with them to vindicate myself.

But it doesn’t matter, really. I don’t have to “get” why my son reacts that way, as long as I can see through to the hurt and sadness that lies beneath it. When I address the problem through that lens, everything works out much better.

In the meantime, his public persona gets comments like “easy-going,” “goes with the flow,” “so kind and thoughtful,” and “an absolute joy.” Nicholas, like Julianna, has an uncanny knack for creating a fan club for himself wherever he goes. At least among the adults. So I know he’s got the empathy, the ability to think of others. The conscience is there. It’s just that the way I’m trying to access it isn’t working.

So I’m trying to learn new patterns of behavior for myself. It’s hard to teach an old dog new tricks, but flexibility is a good thing–not just for the body, but for the mind and the soul, too. God grant me the grace to raise my son up into a holy man, despite my many failings.

Published in: on May 21, 2014 at 7:54 am  Comments (7)  
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Child Abuse, Part 2: Personal Defense

SEX ED

SEX ED (Photo credit: 707d3k)

One of the comments on yesterday’s post took issue with the idea that teaching children about their dignity as human beings, and in particular the dignity of the body, can be any protection against predators. I’d like to address that as a starting point today.

Realistically, there is no foolproof way to protect our children from any of the dangers they may face. But to me it seems self-evident that whatever defenses we can arm them with are wise investments. I do believe that young women and men who truly understand their value and dignity as human beings are more likely to be capable of protest when they are pressured, either by peers or by authority figures, to do things that violate that dignity. It’s no guarantee, but it’s another tool in the arsenal.

I used to believe young children should be shielded from all references to sexuality, because it would sully their innocence. But this implies that sexuality is a) not innocent, and b) something separate from personhood, when the truth is that the two are braided together so tightly that separating them leads to dysfunction.

I am now convinced that lessons about sexuality cannot be imparted in a single conversation upon the onset of puberty, but must, MUST be introduced a bit at a time. You don’t dump Pi r squared on a student without laying the foundations first; they’ll never, ever understand it. They might be able to plug in numbers to a formula, but they won’t understand. The same is true of sexuality. A child’s psyche isn’t prepared to deal with so much earthy, bodily frankness if it’s never been introduced before.

So in our family we start in early childhood by laying foundations.

1. The key concept is this: the body is holy because it is the dwelling place of God. God lives in the soul, and the soul is housed in the body. Our bodies were given to us in order to make the world a better place. A place that looks more like what God’s vision for it.

2. Because of this, we take care of our bodies. We don’t play with them as if they’re toys, and certain parts of us are not meant to be touched by anyone other than a parent or perhaps a doctor in an examination, and beyond a certain age, not even by a parent. We care for our bodies by keeping them clean, well-nourished (healthy eating and exercise are part of this lesson) and well rested.

3. We call body parts by their proper names. Euphemisms and slang imply that there’s something that needs to be hidden because it’s bad to talk about. The kids are comfortable with words like breast and penis and labia and scrotum. (More comfortable than we are, to be honest.)

Once these foundational concepts are worked into life, it’s not such a stretch to talk about where babies come from. God puts the baby in the mommy’s tummy, but you know the child is going to ask how. It would be easy to punt and say something lame and evasive, but I think that’s shortsighted. Kids need to understand that something holy and miraculous happens in the sexual act, and that they have a part to play–that their choices and their dignity are relevant.

So I tell the kids that mommies and daddies have a special hug they give each other, and sometimes when they do, God takes something from the mommy and something from the daddy and makes it into a baby that grows inside the mommy.

Alex has probed further, and I have had to say, “You don’t need to know that yet.” I think of Corrie Ten Boom’s story about the suitcase a lot.

Now, when we need to address abuse by authority figures or even something Alex sees in the movies that doesn’t add up, we aren’t constructing elaborate evasions in a misguided attempt to preserve his innocence. This weekend we were watching Superman Returns and Alex, puzzled by the complicated relationship between Lois, Superman and Richard, and how that boy could be Superman’s kid, asked, “So…are they married?”

“Alex,” I said, “the thing you have to understand is that the special hug is meant to be given by people who are married to each other, because that special hug makes babies, and every baby has a right to grow up in a family with a mom and a dad who are married to each other. But the hug can be done by people who aren’t married. That’s not how it’s supposed to be, but sometimes people do.”

What I’m trying to get at is that the issues of sexuality are all tied together. You can’t just address child abuse in a vacuum. Because then, yes, it does destroy a child’s innocence. But if you give them a vision of their own dignity as human beings, that facilitates those other, more difficult, conversations. It gives them one more ring of defense in case, God forbid, they do face a situation you can’t protect them from. And in the long run, it should help them live an integrated, holistic life, too. This is my theory. I’m the first to admit it’s unproven, but it’s in the testing phase, and so far the indications look good.

Sibling Love?

“I’m sure you know this already,” said Julianna’s teacher, sitting in our living room on Saturday morning, “but…Julianna is just so sweet.

Christian and I exchanged a glance and chuckled, because we hear it all the time. In fact, he’d heard it from the counselor at her school just a couple of days before. And we get it all the time when we’re out and about as a family.

Which makes me really curious to know what goes through my other children’s minds when they hear such things.

The world’s perception of Julianna:

Strawberry Shortcake: Berry Blossom Festival

Strawberry Shortcake: Berry Blossom Festival (Photo credit: Wikipedia)

My children’s perception of Julianna:

(:27)

People routinely tell you how great your kids are, and every time they do, you have this surreal moment in which you have to remind yourself that they don’t see all the moments you do. Right?  But you’re an adult and you can remove yourself a bit from your own experience and appreciate what others see.

The kids, though–it’s harder for them. Above kidding aside, I really do wonder what my boys think of their sister. The relationships among the three of them are pretty clear. Nicholas is a button-pusher and he knows Alex’s buttons at least as well as he knows mine, but they declare regular cease-fires to play Ninjago or Avengers or Other-Superhero-of-the-Day together. Nicholas wants to be Alex, and Alex’s most common spiritual goal has to do with being nicer to/more patient with his brother. Alex and Michael adore each other, pure and simple. Nicholas and Michael are hurtling toward a mirror image of Alex and Nicholas’ relationship.

But Julianna stands kind of outside all these relationships. She plays with them occasionally, but she’s not cognitively able to play pretend; she still prefers to sit and look through word cards and listen to music. Her communications are different. You never know if you’re getting a straight answer out of her. She’s just, well, different.

We’ve never tried to hide, downplay or otherwise sugar coat Julianna’s differences. Alex began learning about Down syndrome as soon as we could talk about it without crying. Nicholas, being far less empathetic and much more, er, let’s call it focused-on-himself than his older brother, has only in the last six months begun to process what that extra chromosome means. But both of them know that Julianna’s disability means they have an extra long-term responsibility as brothers.

The circumstances of each person’s life color childhood, but the way they react to those circumstances is unique to each child. When I see Alex playing with his cousin or a friend who is around Julianna’s age, it always causes a pang. We had our first two close together partly so that they could be playmates, but it didn’t work out that way. As much as we value treating Julianna like any other child in our family would be treated, we can’t escape the fact that she is different, and those differences force many, many accommodations to be made. She does get treated differently. And I wonder how my boys will react to their sister in the long run.

A Julianna primer

Mothers Tea 2First, an introduction to Julianna-speak:

  • Kwawk-wee–chocolate
  • Kee-yoh–carousel
  • Kohl-ee–Nicholas
  • Al-ee–Alex
  • Bah-koh–Michael
  • Bah-ee–Mommy
  • Geepaw Geepaw–Grandpa (or Grandma, or both)
  • wei-ee yah-yee–swim lessons
  • wah bee-bah–watch baby signing times (but it means “movie”)
  • pah-tah–pasta
  • Hah boh-bee–happy birthday
  • hoe-ee–horsie
  • geiger–tiger
  • goggie–dog
  • Beebee Iccshee–Baby Izzie. (Not sure how to put that consonant into letters; it’s in the back and the front of the mouth simultaneously, a sound related to both sh and the French r.)
  • Wow-kuh–fire truck
  • bih bugee–big bug
  • lee bugee–little bug
  • wow doy–loud noise

Go on, try saying these out loud. See if you can hear the original word buried in hers.

Julianna has difficulty with speech because her tongue is larger proportional to the size of her mouth, and because of low muscle tone, which makes it harder for the muscles to work together. If you think about it, speech is the finest possible fine motor skill the body performs. Minute variations of the tongue, the cheeks, the lips and the teeth create a vast array of sounds.

The human brain can clump sounds together that actually aren’t the same. For instance: Huge swaths of the population seem incapable of putting s, t and r back to back clearly. “Strong” becomes “shtrong,” thunderstorm “thundershtorm.” Yet we recognize the words despite mispronunciation. This also accounts for being able to talk to people with different accents.

Watching Julianna learn to talk has taught me how closely-related the various sounds really are. When he was little, Alex used to say “kyack” instead of “truck.” At first blush that sounds not even remotely similar, but say “truck” and pay attention to where your tongue hits. Now say “Kyack.” Both of them begin with an explosive consonant on the roof of the mouth, followed by pulling the tongue back for a vowel that sits in virtually the same place.

So it is with Julianna’s speech. One of the first phrases we identified was “wah bee-boh,” which literally translates “watch baby signing times,” but in reality means “movie, please.” Baby = beebee, shortened to bee. Signing and Times both have long I’s, but the shape required to produce a long I is not that far removed than that for a semi-long o.

The thoughts she’s trying to express are getting more sophisticated–she is, after all, six years old; imagine being six and not able to communicate in complete sentences. But as they get more sophisticated, they become harder to decode. Nicholas continues to boggle my mind by being able to understand things the first or second time he hears them. Maybe, being not far removed from that developmental stage where all sound combinations are a bit suspect, he’s got the brain plasticity to run through the myriad possible combinations and come up with the right one to fit the context. Or maybe this is an early indicator that he’s going to have a gift for languages. Who knows? In any case, I’m becoming more grateful for his gift every day, and although mostly I wanted to record this for my own memory, I thought other people might find it interesting as well.

And just for fun, here’s Julianna reading with Christian last night:

 

Published in: on June 5, 2013 at 7:34 am  Comments (8)  
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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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The Trouble With Absolutes

I used to think I was an “attachment parent.” I have kept my babies, all four of them, close by me, never put them on a schedule, never fed them a bottle, responded to their needs and always proceeded on the belief that we have to learn to be parent and child together.

I don’t believe in letting them cry.

But.

When Alex was about four months old, it became impossible to put him down. He could not transition from breastfeeding to the crib without waking. Couldn’t do it. For a while I laid down with him to nurse, and that way when he finally conked out (45 minutes later), I could cautiously slide away, leave him on the bed, and go on with life.

It worked. I listened to my baby and met his needs.

But 45 minutes takes a real chunk out of married couple time. After a few weeks I realized I wasn’t leaving the house, because if he needed to nap and we weren’t somewhere I could lie down with him and leave him there, we were in trouble. Before long, I was falling apart.

Finally I gave in. We let him cry. Of course, we went in and soothed him every five minutes, then ten, but oh my goodness, it felt wrong. I was a mess. But then–Hallelujah! In less than a week, he learned to put himself to sleep.

Fast forward three children. At 4 1/2 months, Michael is in a totally different environment than Alex was. With big siblings grabbing him by the head and yelling in his face, picking him up, playing with him, he’s perpetually stimulated. All last week, he refused to nap. He would nurse to sleep on the breast and wake up the instant I put him down. If I got lucky, he’d sleep twenty minutes. At night, sometimes he would go down at 8, but often he’d get a six-minute snooze at 7:30, only to be zinged awake again by the chaos of three other kids getting ready for bed, and then he’d be up until 9:30 or 9:45 with us–wiggly, hyper, and wearing us out.

I’m no baby whisperer, but after four kids, I can intuit a lot more of what’s wrong with a child than I could seven years ago. Michael was tired, and he couldn’t get to sleep. He was too dependent on me. That much I knew. What I didn’t know was what to do about it. I was trying to avoid the “let him cry” solution. But when I started to fall apart, it was clear what had to be done.

I believe in attachment parenting. But these days it seems there’s never enough of me to go around, and everything’s getting broken (the baby swing, the CD player, etc.). I raise my voice far more often than I would like–another thing attachment parents DO NOT DO. You never, ever yell at your children. You find ways to discipline positively, without shaming them. So between losing my temper and letting my baby cry, I feel I’m betraying my convictions.

But that’s the trouble with absolutes. They become codified and inflexible, and life involves too many variables. I totally believe in teaching children good behavior by reason and by empathy. And with Alex, that’s primarily what I do. But you can’t reason with a two year old–or a three year old, for that matter–and you can’t have your eyes on your kid at every moment, especially if you have several children. Sure, it’s a worthy goal to distract them before they get in trouble, but when they go around hitting their sisters, or taking toys from their brothers, a calm, reasoned approach is like taking a Rembrandt and throwing it in a blender. Sometimes, they need to see Mommy and Daddy angry, because it’s the only thing that sinks in. I wish that wasn’t the case, but in my experience, it is.

And when a baby’s showing you he needs to sleep, and every other possible solution has been tried without success, is it reasonable to take crying himself to sleep off the table? Is it better to let him teach himself to go to sleep by crying for a few days, or is it better to let him drive himself to utter exhaustion because he can’t sleep at all?

(That’s a rhetorical question, by the way.)

As much as I hate the process, I don’t believe I’m damaging my children. As I have said before, some of the most important lessons of my life were learned, not in joy, but in suffering; not in affirmation, but in shame. Sometimes a good parent has to allow her child to suffer; that truth isn’t going anywhere. As kids grow, they’ll have to suffer through broken friendships, heartbreaks, failures of all kinds, academic and personal. If I try to shield them from all pain, I’ll deprive them of the richness of life.

I don’t ignore my children’s needs for my own convenience, but there are lessons they need in order to become healthy adults. Yes, I fail sometimes, and when I do, I apologize. And I hope from that, they learn another important lesson.

A Portrait of Nicholas

This isn’t something I do often, but just for my own sake, I want to share a glimpse of my kids, separate from how they interact with me (which is what I usually write). Since I’ve been struggling with the stage Nicholas is in a lot lately, it seems like a good idea to start with him, and what an amazing kid he really is.

  • He adores his baby brother, even though said brother has usurped his place in the world. He giggles every time Michael’s wildly-flailing fists contact any part of his body.
  • The cute speech-isms of new speaker are fast fading. This week I realized that “too-ie” has now become “cookie,” and “the nail has a tail” (the snail has a tail–sounds rather Dr. Suessish, doesn’t it?) has now become “the sail has a tail.” He drives Alex crazy by repeating everything he says. A few days ago we spent Michael’s morning nursing going back and forth on the word “harmonica.” He tried it five times, and three of them came out as “formica,” “Mo-hannah” and “har-monta.”
  • He’s getting to be a whiz at puzzles; this part of the age of three I do love, because I love doing puzzles. He’s working a 100-piece Thomas puzzle and a 30-piece fire station puzzle all by himself. Welll, mostly all by himself.
  • He loves to paint.
  • His conversations with Julianna are adorable. They trade off big sibling status; they bicker over toys three dozen times a day, but in between, they crack each other up. They like to hold hands, and he takes the lead in this matter all the time.
  • He instinctively understands that he has to ask Julianna yes or no questions, so they can converse quite fluently despite Julianna’s limited and still barely intelligible vocabulary. In fact, they converse much better with each other than Julianna does with any of the rest of us.
  • We have never had a conversation with him about Down syndrome, and thus he’s growing up with a much more organic picture of what it means to be Julianna’s brother than Alex has. It will be interesting to see how he and Alex process the subject when they get older.
  • He’s so ready to go to school. In two weeks, he’ll be screened as a peer mentor for next fall, and we plan to send him to preschool at Early Childhood Special Ed. Every day, he tells someone that “Juweeanna wides the ye-ow bus, and I wide the bwue one.” (That would be a city bus…but he’s never been on one, except in his dreams.)
  • He’s been dry at night several times, with help. We’ve undertaken a new project, you see, tired of quadruple diapering at night, and we’re getting the kids up at our bedtime and in the middle of the night when Michael nurses. Trying to train little bodies to wake up when bladders get full.
  • And yesterday, Hallelujah Lord, he reached for the open compartment on the printer….and then, remembering how many times he’s been scolded not to touch it , he stopped, looked at me and said meekly, “Do you need that closed, Mommy?” As a reward for asking, I let him close it. And then I gave him a big hug and told him how proud of him I was.

And–how appropriate–he just came over and said, “Mommy, I need you.” Translated: I want to sit on your lap. So here he sits, asking where O is and what the camera is, and did I push the “i”? and “N starts with me!” (Meaning, his name starts with N.) Another day in the life begins.

Great Expectations

Last Friday was Julianna’s kindergarten IEP meeting. The wisdom of my fellow parents-of-kids-with-special-needs told me I needed backup for it. Several people offered to accompany me. If I’d remembered before the meeting, I probably would have availed myself of the offer, but as I said earlier this week, my life is crazy, and I only remember the essentials…you know, diaper changes, feedings…because the need makes itself obvious. ;)

However, I have a good relationship with all the people who work with Julianna in preschool, soI wasn’t worried. it was generally a positive experience. It takes an hour or so to go through current skills strengths, weaknesses and goal-setting, and then we got to the part where we say “how many minutes in the regular classroom, and how many minutes of special instruction?” At that point, I sensed everyone in the room taking a deep breath, and I thought, Uh-oh.

The problem, her classroom teacher pointed out, is that the people at the new school don’t really know Julianna, don’t really know what she’s capable of. So while we, and specifically she (the teacher), know her to be more than capable of a high level of inclusion, the new team wants to play it cautious. After all, we’d rather over-support her and withdraw it quickly than under-support her and have her begin kindergarten with frustration or failure.

It makes perfect sense, and for that reason I took a deep breath and signed off on something utterly contrary to everything I want for my daughter: namely, putting her in a self-contained classroom for all regular instruction, with only her “specials” happening with her typically-developing peers. I did so with a very clear instruction that I wanted it in the plan that re-evaluation would begin immediately, and not late in October or November. And only after taking down three different names for people within the new school whose phone lines I can burn down to make sure it doesn’t get set aside.

I signed, but I have tears in my eyes thinking about it, and a vague sense of nausea. Because I know how hard it is to move a bureaucracy unless you have an advocate within…and my whole support system is at the early childhood center, not at the elementary school. And our goal for the kindergarten year is to see if Julianna can function in the classroom without that support, because only then can we explore the possibility of sending her to Catholic school with her brothers.

I spent all week watching her outdo the expectations for a child with Down’s. They think she needs special P.E. because she’ll need help with stamina navigating a school so big. Knowing my child, I shook my head and smiled. I smiled bigger three days later when she pushed a stroller containing a child almost as big as she is up a huge hill, down the hill, around the corner, 2/3 of a mile from the fire station to our house. Stamina: check.

I watched her name colors and identify letters, and shook my head at 65% special instruction, because she really isn’t much behind other almost-5-year-olds in terms of her knowledge…only in speech.

And then, as I worked on a music list before choir practice yesterday afternoon, she settled at my feet with the cards from the “Your Baby Can Read” box. I’ve ceased to wonder why she’s interested in a bunch of cards with no pictures, only words; she just likes shuffling through them. In the middle of scribbling notes to myself, Julianna uttered her usual “pay attention to me” grunt. I turned around to see her making a sign I didn’t recognize: her hands crossing in front of each other repeatedly, as if drawing attention to her ribs. “I don’t know that sign,” I said, but she kept signing insistently. I glanced at the card on her lap. It said “zebra.” “Zebra?” I said halfheartedly.

“Euh!” she said happily, and signed all the more furiously.

I frowned, trying hard to squelch the leap in my chest, and turned to the computer. And I found this link. And my breath caught.

My girl can’t talk, but she can read…at least a little.

My breath caught, because now I know I have reason to fight for what I always said I wanted for her.

Published in: on January 19, 2012 at 8:29 am  Comments (7)  
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