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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“Eyes Ahead”

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

My name is Julianna.

This is a story about keeping my eyes ahead.

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

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

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

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

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

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

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

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

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

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

Published in: on January 5, 2012 at 7:55 am  Comments (3)  
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A Kerfuffle About Doughnuts (or, The Rules Apply to Special Needs Kids, Too!)

Doughnut covered with coconut flakes

Image via Wikipedia

By the time I got there, Alex was crying.

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

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

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

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

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

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

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

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

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

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

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

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

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

And they’re right.

Pixie vs. My Little Linebacker: Smackdown!

I always expected that Nicholas would leapfrog past Julianna by the age of two, and that they would switch places in the family, he taking the position of role model, she becoming the one who looks up and tries to imitate.

It turns out it’s not that simple. This isn’t going to be a deep, insightful blog post, but I thought it might paint an interesting picture of life with Down syndrome to try to show the dynamics of these two children’s development.

In many ways, my little ones are still twins. As Nicholas grows and Julianna stays tiny and pixielike, they’re starting to look the part—enough that a mom at a birthday party the other day was shocked to discover Julianna was two years older.

The place I really expected the difference to manifest was in speech, and I was right. At 2 ¼, Nicholas is a little parrot, repeating every sound combination he can figure out, and making hilarious guesses at all the rest. We’re constantly trying to decipher what he’s trying to say, because 75% of the time he’s trying to communicate. “Five plus two,” Alex yelled from the living room the other day, and from the level of my knees, where Nicholas was helping pull dishes out of the dishwasher, I began hearing “I…puh…too. I…puh…too.” He doesn’t bother with details like closing consonants—or midword consonants, for that matter. “Daddy” becomes “Da-ee,” doggie becomes “dah-ee,” and so on.

Meanwhile, Julianna continues to communicate by yelling, pointing, grunting and signing. She has the same three or four words she’s had for quite a while: “mmmmmmmmmAH!” (moon), “d-d-d-da!” (dog), “bBAH!” (ball), and so on. (1. Yes, they all have exclamation points at the end. Speech is hard for her, and she puts her whole body into the effort.) (2. “Mama” and “dada” are not on the list, but “Ba-ba”, grandpa/grandma, makes an occasional appearance.) I’m trying now to stop responding to her demands for drinks unless she says “wawa” or “mmmmmmmuh.”

But speech delay does not mean an equivalent delay in cognition. For Julianna, the difficulty in speech is physical. Speech is largely a physical task. With “hypotonia” (low muscle tone), every physical task is harder—thus, she didn’t walk till 2½ (although the last ½ year of that delay had more to do with major illness than low muscle tone). Speech requires your tongue to do incredibly tiny, complex movements in quick succession. For one who struggles with all physical tasks, speech is bound to be delayed—but that doesn’t mean understanding lags equally.

Emotionally, Nicholas is still far behind his big sister. He follows instructions better, but it’s not because she doesn’t understand. It’s because she doesn’t want to comply…because it’s hard. I’ll hand her a pair of underwear and say, “Put on your underpants,” and she’ll hang her head and stare at my midsection, she’ll yell and point to the music box playing in the background, she’ll sign “book”—anything to avoid the task at hand. At least three times during the dressing process each morning, I have to count backward from 5. If she’s in a good mood, she hops to as soon as I start. On a bad day, I get all the way to one. But she always does the job in the end.

She understands. Oh, yes, she does. She just knows there’s something different about her, and she’s figured out how to use it to her advantage.

Another example: evening chores. At the table one night, Christian told Alex his new job was sweeping under the table after dinner, and that the little ones would take over his old job, clearing the table. Of the two little ones, Nicholas was the first one finished. We told him to take his plate to the dishwasher. Next thing I knew, Miss Stealth herself had slid down from her chair and was plodding across the kitchen floor carrying her own plate, without even being told.

Consider this your lesson in interaction with children with disabilities. Difficulty in speech does not an equally-slow brain make.

Julianna is toilet trained—Nicholas is about 1/3 of the way there. They both recognize about half the letters of the alphabet. Julianna can say “k” (when she really wants to, but it’s hard) while Nicholas still skips it or substitutes “t/d”.

Well, I’m getting long…time to stop. But we’re uniquely positioned to be able to visualize how incredibly complex is the nature of developmental delay, and I wanted to try to share that with all you fine people. I’m interested to hear from you: did this give you an “aha” moment? Was this something you already knew? Can you share examples from your own experience?

Published in: on July 12, 2011 at 6:05 am  Comments (2)  
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