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December 10, 2008

a milestone, of sorts

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I haven't written about Frances's size much recently; ironically, that's because it's more of an issue than it used to be. Frances is known by everyone at her school, in every grade, because she is small. As we walk down the hallway I hear older kids say behind her, "Frances is so cute. She's so tiny." And older kids and even bigger kids in her s/k class will give her a big grin and reach out a hand to ruffle her hair or tell her how adorable she is, as if she were the class gerbil instead of a fellow student, and it drives me nuts but Frances says she likes it, and maybe right now she does. In any case, her size is becoming known to her and known to her peers and relevant to her relationships in a way it wasn't before, and so it's becoming less my story and more hers, and I don't want to write about what it means or why.

Maybe one day she'll start her own blog and write about this stuff. Or maybe she'll consider it completely unimportant.

In any case, today we went shopping for new winter boots because the size sixes were too small. We ended up taking home size eights, and a bundle of socks size 4T. Her jeans and shirts now are size 3T. And while she's still way below the 1st centile line on a standard growth chart, I wasn't expecting her to be this big yet. I expected that, when she was five and starting kindergarten, she would be wearing size 2T or 24 months.

It's complicated to think about, let alone write about. She would be equally valuable, equally loveable, no matter what size of clothing she wears. But she's growing a little bit faster than the experts thought she would, which means an easier time buying a bike and learning to drive and finding clothes when she's older.

I may be the only mother I know who celebrates when her daughter outgrows a size.

Posted by Andrea at 2:11 PM | Comments (14)


September 16, 2008

Queen Frances

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In Frances's mind, she is mighty. She is strong and she is fast. She is brave and she is clever. She knows important things. She is a good mommy to her toys, who love her. She is as beautiful as a fairy princess. She is enchanting and special. She can hide so well no one could ever find her. She is capable, practically a grown-up.

She expects to be loved. She assumes the people around her will see all of her special qualities and love her for them. She will speak to you as if you are equals, with gravity and poise. When she dresses in her blue kitty kat robe, she is a kitty kat; she will be put out if you act as if you can see her human form beneath it.

She has work to do, on her computer and in her notebooks. She has projects to finish.

In her mind, she is ten feet tall. She was little last summer, ages ago. If Frances were to meet you, she would sit solemnly beside you and discourse on subjects of great importance. She expects this solemnity to be reciprocated.

If you were only able to see the tiny doll-like blonde girl with the tremendous blue eyes, the hands just big enough to wrap around your finger, the round cheeks and soft chin; if you did not see the wise, knowledgeable, strong, capable person she is; if you treated her like a baby or even like a little girl; she would not like it. And she would not like you.

Posted by Andrea at 9:02 AM | Comments (3)


July 9, 2008

forty-two*

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growth-chart.gif

It's been a long time since I've posted one of these--those of you who are more recent readers may never have seen one. This is a CDC growth chart for girls from the ages of 2 to 20. The thick black line is the 50th centile, or the average height for girls; the lines farthest outside represent the 97th and third centile lines, respectively. The orange blob is Frances's current height. (You can click on the picture to expand it; the thumbnail is a little blurry.)

The history of Frances's growth (or lack thereof) has been obsessively documented over the past few years, and for those of you who are interested and haven't been reading since the beginning, there's a link, and here's one to an entry showing an old growth chart. But as you can see, Frances is not "normal," which has been defined by the wisdom of the statisticians for every human field as "between the third and the ninety-seventh percentile." She's not even close. She is, at four-and-a-half, approximately the same size as the average two-year-old, as I can see with my own eyes whenever we go to the park and some chubby stumbling toddlerish person of about the same height begins to follow her around.

There's nothing wrong with "normal," and there's nothing wrong with "not normal," when used in the statistical sense; all they really indicate is how common something is. Clearly a child of Frances's age and size is not common; is, in fact, exceedingly rare, on the order of about one in ten thousand. Most of those children will have common forms of dwarfism (which is defined, again, as any condition resulting in an adult height of less than 4'10"), such as achondroplasia or hypochondroplasia. The ultimate cause of Frances's short stature is not likely to ever be known. Whatever it is is that rare. Even within the rarefied world of dwarfism, she is not normal.

The problem begins when "normal" is conflated with "good" and "not normal" with "wrong," which is what often happens. "Normal" is a statistical term, when used properly; it should be not be a value judgment. No, Frances is not normal, but there is nothing wrong with her. I see strangers wrestle with this when they ask for her age. Some people (such as mike) believe that those who are not normal do not deserve to live. This becomes a statistical impossibility once you realize that however you constrict the gene pool, there will always by definition be a third and ninety-seventh percentile line, and by definition six per cent of the human race will always be outside those lines. If you eliminate the three shortest per cent of humans, or "fix" them to make them taller, all that will happen is that the third centile line on that chart will shift upwards, and three per cent of human beings will still be below that line--just a different three per cent, for different reasons. That's how statistics works.

Here is where I am generally expected to make something like the following argument:

"I don't care." (It's true, I don't, not anymore.) "Frances is bright, loving, affectionate, kind, funny, playful, well-behaved, polite, considerate and sweet. She has social gifts that will make up for whatever problems her height brings her."

It's not that this isn't all true. It is. But it's often read, taken, or even intended, as if Frances's other gifts (or the other gifts of other not-normal children) somehow make up for whatever is seen as their primary defect. It's not that Frances's height then becomes unimportant so much as she is then seen to have earned the right to exist as a short person by having other things to offer in compensation for it. This bothers me. What if she were vicious, violent, or stupid? Would she then not have the right to live as a short person, because she can't make up for it by being more-than in some other sphere?

What about autistic children? It often seems as if they 'earn' the right to be autistic if they have superior math skills. Children with Down syndrome seem to be able to 'earn' their lives by bringing happiness to other people. It isn't that the not-normal have a right to live because they are human, and alive, like the rest of us. Oh no.

Think of the last time someone objected to an argument on eugenics on the grounds of "what if one of them is the one to cure cancer?" What if they are? What if they're not? Do people born different in whatever way need to earn their right to live by making an extraordinary contribution? Can't they just be alive like the rest of us are alive, to enjoy a beautiful sunny day, the taste of ice cream, holding a loved one's hand? How do you measure the worth of your own life? By whether or not you're going to cure cancer?

Frances is nobody's object lesson. She is not here to teach you or me or anyone else anything at all. She doesn't have to make up for her small size by being sweet or sociable or smart. She is herself, as I am myself, and you are yourself, and no one has to do anything to validate their being. She is here to live a good life and be happy. Just like anyone else.

"Normal" is not the same as "good" and "not normal" is not the same as "wrong." We need to be careful that whatever it is we're fixing isn't for the sake of our own comfort. We already have a good model of "fixing" in place, the disease model, in which things that cause human suffering for whatever reason are corrected. A cleft palate is repaired not because it isn't "normal" but because it causes difficulty in feeding. Is there suffering? If yes, fix it if you can. If not, don't. Suffering is subjective. It's possible that one person with, for example, autism, will feel that they suffer with it and want to take a cure if one becomes available, and that someone else with autism will not. Why does it need to be definitive? Why do we feel like we need to have The Answer on What To Do With Autism? Or deafness, Down syndrome, whatever.

DSC_0027 (2).JPG

Fixing something implies it was broken; when it comes to people, it behooves us to be certain that there is something demonstrably broken before it is repaired. Or we risk trying to 'fix' what is already whole, and leaving all the brokenness in place--in ourselves, the beholders whose discomfort tells us that whatever is broken is at least in part in our own heads.

~~~~~

*It's an in-joke. Tell me if you get it in the comments section.

This post is part of Julie's Hump Day Hmm for this week, on the subject of fixing people.

Posted by Andrea at 10:51 AM | Comments (21)


May 29, 2008

Mean Girls

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We don't get much playtime on weekday evenings; but what we had, on Wednesday evening, we decided to spend outside. It was sunny and warm if below seasonal and after spending so much of our days indoors I feel it's important to get out. I was blowing bubbles and Frances was catching them when C appeared, running with a gang of big-kid friends. "C!" Frances shouted. My heart sank; I know some of these kids, they are not kind. Among them is the little girl with the curly hair always jammed under a cap who manages to give off the impression of a Dickens' street urchin without any of the charm or innocence. When C is with the little girl with the curly hair, she never wants to play with Frances. "C!" Frances ran over and started talking excitedly about the big bottle of bubbles her Mummy got, and maybe she would like to play?

The little girl with the curly hair said, loudly, "She can't play with us. She's too slow." She mimed a sprint; "She can't run." The other kids left on their feet or their bikes and Frances was alone; she came back.

"C won't play with me."

"Oh no?"

"The girl with the curly hair said I'm too slow."

"How do you feel about that?"

"Sad."

"Do you want a hug?"

She nodded, and I cuddled my girl on my lap. "Slow. Well that's just silly."

"I'm not slow! I'm fast!"

"No, you're not slow; you're just little. The other kids are bigger, that's all."

She burrowed her head against me. The little girl with the curly hair walked over carrying her bright pink Bratz basketball; I hadn't previously known such a thing existed. The little girl with the curly hair's eyes are deeply crossed. This is a fact that would normally be insignificant, except that Frances's eyes too would be deeply crossed--if she weren't wearing her glasses. She has glasses, and she wears them. The little girl with curly hair does not, and I found myself wondering if she doesn't have any, if her parents can't afford them or if they don't care or if no one makes her wear them; I found myself wondering if I should feel compassion for the little girl with curly hair, but at the moment, I couldn't do it. She was the little girl who hurt my little girl. I wanted her to hurt.

She grinned at me. I glared.

"It's fun to knock on doors and run away," she said.

"Actually, that's very rude," I replied.

She heaved her basketball in the direction of my front door; it banged off a wall and lay on the ground a short ways away from us. She stared at me impudently, expecting what? A laugh, a smile, a grimace? I stared at her calmly; she ran away, leaving her ball behind her. Though I am only assuming that it is her ball, that she didn't just pick it up somewhere.

My little girl and I went inside and upstairs and after she got into her jammies, we had a long talk about why people say mean things. I tried to tell her that it's the mean people, not the people they're talking about. That it's normal to be hurt and sad, but in the end you have to realize that mean people don't make good friends, and that good people who make good friends will not say mean things that hurt you and make you sad. That it's important to find those good people, and not worry too much about what the mean people say, because the mean people are mean to everyone. It's hard to find the words. She's only four, how much can she understand?

When she's a little bit older I'll try to explain that sometimes the mean people are really very sad, and that they don't care about other people because no one cares about them; but right now all I care about is that she knows how worthless the words are.

We read Stella Fairy of the Forest on the big bed and I walked her back to her room and tucked her in, and we talked about the fun things we did that day--something I am trying to do with her like my 3 Things book. She liked blowing bubbles, and oddly, she liked talking about mean people. I asked her how she was feeling.

"Sad," she said.

"Oh? Why sad?"

"Because," she said morosely. "Because it was a fun day and it's hard to say goodbye to a fun day when it's night time."

So there may or may not be a Girls Staying Up Late Party when I am on vacation with her in July. There may be snacks, and movies, and waiting until it's dark before we go to bed. Frances wants to invite some friends. Stay tuned.

Posted by Andrea at 7:21 AM | Comments (9)


January 4, 2008

Frances Friday: Not Fair!

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Nothing is fair at our house right now, or so I've been told. It's Not Fair that she has to go to bed, and it's Not Fair that she can't watch one more TV show before night time, and it's Not Fair that I also want a turn on the computer or that I limit her total screen time, it's Not Fair that she didn't get to finish making her lego house for the baby girl, it's Not Fair that she's not done her dinosaur yet and it's time for dinner, and it's Not Fair that C didn't call on her today. It's especially Not Fair that she needs to eat a suitable quantity of healthy food before she can eat chocolate chip cookies (aha, yes, I caught on to that one. Sneaky kid. Sure, they say that kids will always eat a good amount of healthy foods when they are hungry--until they turn four, and then they will learn that if they pretend to be full after a few spoonfulls, they may trick you into an early desert). It's one big Not Fair world, and I am the Chief Officer of Not Fairness.

But it offers me so many opportunities to sound like a Cranky Old Lady, that I don't mind. For instance: "Well, I'm sorry, but that's just the way it is." Or: "That's what happens. When you choose to play with lego after supper, you run out of time for TV. But lego is better anyway. No, it's time for bed." Or: "You have to have a bath because your hair is getting dirty. Yes, it is. No, we're going upstairs now." Or: "Frances, this is my computer. I don't have to share it with you at all."

But my favourite so far: "I'm the Mom, and it's my job to make the rules, and this is what I am saying, and what I say goes. Now move."

This, also, is Not Fair. Just ask Frances.

~~~~~

This week has brought us several night-time adventures.

#1: Late and getting ready for bed when I hear a soft thump and a sleepy cry from her bedroom; in I go, to find Frances performing a handstand from her bed, hair all tumbled on the floor, pyjama top riding up her back. I grab her under (over?) her arms, and sit her in her bed. "Oh no, did you fall off the bed?"

Sleepy nod. Very big, very round, very blue eyes. Perplexed looking frown, with pinched little lips.

"Did you catch yourself on your hands? Oh no. Do you want me to kiss it better? Do I need to move the gate up a bit? How did you manage that, anyway? Let's tuck you in again. Here is your duckie; see, she fell out of bed, too."

Lay her down with her head on her pillow, put the duck in her arms, pull the sheet to her chin and she is asleep before I've left the room.

#2:
Frances: I just want to snuggle! (affronted tone)

Andrea: (jolts awake, stares at clock which reads 6 am) Oh. Hi, Frances. Good morning.

Frances: I just want to snuggle! I didn't wake up early! (clambers up on bed)

Andrea: I see. You just want to snuggle? Ok.

Frances: I slept later today! I just want to snuggle! (still affronted) Is it morning time?

Andrea: Sort of. Yes.

Frances: Yay! (happy fists in the air)

#3:
Frances: Mummy, I had a bad dream! I dreamed that Daddy yelled at me! He said, Get off of there! And then I cried! I was sad! It wasn't very nice!

Andrea: (jolts awake, stares at clock which reads 4:30) You had a bad dream? About Daddy?

Frances: Yeah! (clambers on to bed, fingers find baby mole--yes, she is still all about the baby mole when she is sad) He yelled at me! He said, Get off of there! And then I cried! He wasn't nice to me!

Andrea: Sweetie, it was just a dream. Come here, let me put the blanket on you. There, are you comfy? Just a dream. It wasn't the real Daddy. It was like TV, a pretend Daddy.

Frances: He yelled at me! I cried!

She stopped crying and put her cheek on the baby mole, an arm around my neck, closed her eyes and tried to sleep. Eventually I took her back to her own bed, but who wants to rush a sleep-time snuggle?

But #4 is the big one:

We are done with diapers at night time. None since last weekend. No accidents. She is very proud of herself.

~~~~~

Frances does not like it when other people call her small, which they have been doing at daycare lately, and she lets me know. "A called me small!" she'll say. "I didn't like it! It made me sad."

"Oh." I'll look for words. "Did you tell A that it made you sad?"

"Yeah. And she did! She called me small!"

"I see. Well, you can always ask a teacher for help. But, sweetie," and this is so hard to say, with her big blue eyes, her narrow shoulders, her small hands folded in her lap, all in front of me, "you are small. Some people are big, some people are small. You are small. But it's lovely. You are just the right size for you."

I'm never sure how far to take this. I hope that she'll show me what she needs when we reach a new milestone, because I'm walking blind here. She is small. I don't want her to grow up believing otherwise, or thinking that smallness is something to be ashamed of, or that mention of it is an insult. How do I share this with her when she is only four?

The other day, she did something, I can't even tell you what because this happens all the time, that was so adorable, that made her so irresistable, that I gave her a hug and a kiss and said, "My cute little girl."

"I am not little," she said. "I am four. I am big."

"So, you are my cute big girl?"

"No," she said, severely. "Cute is little. You can't be cute when you are big."

My lips twitched and I stared at the floor a moment to hide the laugh. I don't think I am ever fast enough, though. "You know, sweetie, you can be both. Cute and big."

She turned away, squared her narrow shoulders, set her lips. "I am smaller than other people. Other people are bigger than me." I don't know where she got those precise words; they are nothing I have ever said. Either she put that together herself or she has been talking about this at daycare too. Her tone was somewhere between wistfulness and resignation. It made me sad.

Posted by Andrea at 8:48 AM | Comments (12)


August 15, 2007

Invisibility

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There is a really cute guy who works in my building. Tall, sandy ginger hair, nice features, broad shoulders, slim. And he doesn't have arms. He has hands, but his arms are about eight inches long, maybe a bit shorter. I see him around, normally buying muffins from the muffin shop in the underground mall.

I imagine if one day we struck up a conversation, he would want neither for his obvious difference to be ignored ("Can you pass me a napkin, please?") nor would he want it to be front and centre ("and look at you! How do you cope? You poor thing, I could never do it"). It would just be there, a part of him, but not all of him. He's probably proud of some of the adjustments he's made and how he's sorted his life: born without arms, at a not insignificant natural disadvantage, but there he is, eating a muffin at his desk just like everybody else.

And not that it's the same thing at all, but I feel that way about being diabetic. I have an insulin pump. You'd never notice the difference, unless you were close enough to see* the tubing popping out over the top of my jeans, or were around when I brought it out to test my blood sugar. I am different, though. I know I'm different. I don't expect or want anyone to not-see my diabetes; I'm proud of how well I've managed it for the last fifteen years and it's a big part of my life. I also don't want anyone to focus on it exclusively; it's not all of me, not by a long shot (no pun intended), and you don't know anywhere near as much about it as I do so please don't tell me what I should and shouldn't eat for lunch.

But where this hits home for me is with Frances.

We went to visit Erik's family in Montreal a few years back for Thanksgiving. Frances was walking confidently by then so she was probably almost two; she has two cousins in Montreal, one a few years and one a few months older than she is, both significantly taller. Frances idolizes her two big boy cousins. On that trip she followed them around everywhere trying to play all the same games although, with her short little arms and legs, she couldn't keep up. At one point we watched them playing with one of those LeapFrog fridge magnet toys with the things you have to plug into the toy to make it sing or say a letter, and Frances was between them, and her itty-bittyness was overwhelming. She was at least eight inches shorter than the cousin who is only two months older than she is.

My SIL said, "It's only because T is so tall. If he were a normal size for his age, you wouldn't even be able to see it."

What my SIL meant was not, "Her size is trivial to me; I don't notice it," although I'm sure that's how she intended it to be taken. How it sounded, and what it really indicated, was more like, "Her size makes me so completely uncomfortable that the only way I can manage it is by pretending it's not there." What she meant was, "The only way I can accept Frances is by pretending that she's not really different, that she isn't who she is."

I've never heard anyone say, "Oh my goodness, does Frances have gorgeous blonde hair? You know, I never noticed." Or, "Really? She has big blue eyes? I just never saw them." Or, "An infectious giggle? You don't say. That kind of thing is completely invisible to me."

But: "Oh, is she short? I just didn't see it. You know, I don't see those kinds of things."

If I hear that, I know the person who is saying not only saw her size, but didn't like it. Was made uncomfortable by it. Sees it as an issue or a problem significant enough that it requires commentary and management. What it tells me is that it's the only thing about her that you did see.

I love her size. I wouldn't trade her for a boatload of normal babies. I wouldn't make her 'normal' if I could. I don't want you to erase her difference in your mind, or pretend to, any more than I want you to erase your perception of her incredibly social and charming personality. ("Wow, can she clearly articulate complex sentences and strike up conversations with complete strangers who are totally captivated by her? You know, I never noticed.")

Because people only render invisible things that they think are problems.

I believe it is the same with any potential differences between two people.

I know you are going to tell me that this is different, because being born without arms or born a dwarf is a problem, a disease, something wrong. Anyone who tells me to my face that there is something wrong with my little girl's size is going to get a punch in the nose. It's not wrong, it's not bad, it's just different, just not like you. The only reason it presents as a problem is because every manufactured item in our manufactured world is manufactured for persons of average stature. So the built environment, which is the primary environment most of us navigate day to day, is overwhelmingly huge for her, and she needs help to manage it sometimes. If she lived in a house scaled for her and played with toys scaled for her, it's you and I who'd need help.

The underlying attitude towards difference is identical: we only render invisible things that we believe are problems. We note and comment on the beautiful child sitting quietly in the airport waiting lounge (Dear Readers, I have received many such compliments on behalf of my little girl), but unless we are rude, we don't "see" the one throwing the tantrum in the lineup. We avert our eyes and pretend it's not there.

A lot of well-intentioned, good-hearted people have taken a particular approach to discrimination and prejudice of all kinds: they don't "see" it. They have absorbed a message from somewhere that since race, size, age, sex, orientation, etc., shouldn't be impediments to a person's life, shouldn't matter in our assessments of them as human beings, that we shouldn't "see" them. But this operates on the same basis as the old underlying prejudice. We haven't so much confronted or changed the old associations between difference and defect, as managed our confusion and discomfort by pretending that the difference isn't there. The better solution is to confront and disconnect that association, to train ourselves that difference does not equal defect; and the only way you can do that is both by seeing difference, and by being willing to be called on any ways you may unconsciously be acting as if it implies a defect.

A few years back the Toronto Star did a study on police pull-overs and found that black people were far more likely to be pulled over, more likely to be charged, and more likely to be arrested, than white drivers. The police association reacted with outrage: "How DARE you imply we are racist! We would NEVER do such a thing! There is a mistake, the statistics are wrong, you've interpreted them wrong. Racism does not exist in the police force! OK, maybe a few bad apples." (The infamous Bad-Apples defence.) They took the paper to court (the paper won, incidentally).

Of course there is racism in the police force. But it is unconscious. The police officers aren't sitting in their cars thinking, "Hmm, black male driving a nice car in a ritzy neighbourhood, looks suspicious. He's supposed to be poor. I'd better pull him over." Something just twigs that says "not quite right," and he acts on instinct. But the unconscious instincts are racist.

Our intentions are good. We've made this unconscious because we recognize that it's ugly and obscene. We know we should be better than we are, and we want to be, so we hide the horrid bits in the shadows and refuse to look at them. Convincing ourselves that we don't see difference and that we are free of all biases ourselves is one of the ways we do that. But what happens to something you stick in the shadows? It grows, it becomes more powerful, more difficult to confront, more difficult to root out. It becomes a bogeyman, a monster. It becomes something we dare not name.

Having biases and prejudices doesn't make you evil. It makes you human. The only way to deal with them is to take a flashlight to those shadows, to the musty, dim, ignored, cramped and moldy corners of your own head, and be prepared to stare those monsters down.

~~~~~
*Apologies to my non-sighted readers for the continuous use of the verb "to see" as a stand-in for "to notice." It is a part of the conversation elsewhere so I carried it here. I imagine it could be obnoxious.

(This is a continuation of last week's "Hmm," if it isn't obvious.)

Posted by Andrea at 10:57 AM | Comments (13)


May 22, 2007

Interpreting Hate

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(This has been briefly re-published for the May Just Posts. In a day or two I'll take it down again. Thanks for the nod, Mary R.)

This is one of those entries that will show up, then disappear shortly into the ether, never to be seen again by mortal eye. I've tried to blog about other things since Saturday (including the Monday Mission--sorry, Jen. Really sorry) but can't wrap my mind around anything else until I get this out of my system in some form.

I've had more than my share of spam here over the past few years. I've had a few trolls, people who attack me for one or another thing I did or didn't do or said or didn't say. Since I still follow back every new referral link, in the wake of the photo thefts from so long ago, I've found some very ugly conversations held by some very ugly people who point to what I say about disability and difference and eugenics and acceptance and social justice, and mock it. None of this has ever much bothered me.

But on Saturday, I logged in to find the following comment:

"There is nothing beautiful or normal about midgets, short people, or other rejects. Eugenics was the best idea of the 20th century. Rejects should be eliminated. Your daughter will always be ugly, and less than other people. Sterilize yourself before I have to do it for you. Die."

I have always known that there were people like this out there. And felt that as long as they stayed out there, I'd just keep doing my thing, and hopefully by and by there would be fewer of them. It is because there are people like this out there that I care about the things I care about, and write about them the way I do. I've met enough of their close cousins--the ones who pity us, pity me because I have the best child ever born, who happens to be short--to know that the world is not the haven of tolerance and nonjudgementalism it likes to portray itself as.

It won't surprise you to learn that my first impulse was not a good one. Well, my very first impulse was to track "mike" down and claw out his eyes. (Though perhaps not such a bad idea, either; in the absence of the one sense that apparently guides so much of his judgement, perhaps his other senses could bring him to a more enlightened position.) But this was brief. My first real impulse, the one that stuck, was to edit his comment.

You know. Go in. Change it. Make "mike" tell me what a beautiful little girl I have, and how lucky I am to have her, and how his own inadequacies have kept him from perceiving the value of people who don't have his exact genetic blueprint. Then ban his IP. Tell him what I think of him and his stupid ideas without engaging him, since as we all know, with people like this, that never works. On the advice of some of my bloggy friends, though, who think that this perhaps ought to be reported to the police, I decided to quietly unpublish it instead, and think about what to do next.

The problem is that the farther I get from the initial gut-punch of it, the more I am reminded by my damned conscience of the kind of response I'd like to have for this. Which is not to ignore it, and not to stick my head in the sand and pretend it doesn't matter, but also not to lob back my own hate grenade.

~~~~~

Frances has a gift for people. It's especially apparent to me, since she is so completely my opposite in this arena; she approaches everyone with the expectation of being adored. Almost every time, she is. It has not yet intruded on her consciousness that sometimes she is not; and when she is not, it is because people don't know what to make of her, this happy girl-child who looks like a baby. Children younger than she is attempt to take her hand on the playground and lead her to the baby equipment; she snatches back her hand and says, "NO!" with a scandalized look. So it's beginning. But it's not here yet. And I dread that day.

"mike" is not a global population of one. Someday she will meet someone like this in the flesh. Someday she will realize that she is occassionally not just patronized or condescended to or pitied because she is small (all ridiculous enough), but actively hated. And what will I tell her? How can I explain to her something that I can't explain to myself? That there are people who will hold Frances's life in one hand, with all her fun and affection and kindness and nurturing and all the joy she brings to everyone around her, and "mike"'s life in the other hand--and we don't know him but I'm sure we can all guess what he brings to the world--and they'll decide that "mike" has more to offer than she does. Because she's short.

She can't and she won't remain ignorant of this forever. And what I am most afraid of is that someone like "mike" will destroy what I find most special about her--how open she is, how she approaches people with the expectation of being loved. That she will close herself off to protect herself from the hurt of being rejected for something so utterly meaningless, so trivial, and so out of her control. I want to be able to help her make sense of this in a way that allows her to keep herself open; but how can I, when I can't make sense of it to myself?

Someone out there thinks that I should die, because my daughter is short.

The only thing apparent to me is that I can't allow this to shut me up in an attempt to make myself safe. Those people are out there, whether I allow myself to see them or not. When this hits Frances, I want her to know that I'll face down the monsters with her, not be off somewhere with my head stuck in the sand.

~~~~~

I still want to use "mike"'s words against him. But not in the obvious way.

He wants me to fear him; this much is obvious. He wants me to hate him. He wants to create two sides in the human race--another two sides, I should say--and put me and my girl on one, and him on another. I won't let him. Whatever I do with this, whatever I ultimately let it motivate me to do, will be something that brings us closer together. It will be something that makes the world a better one for my girl, even if only in some immeasurably small way. I'm going to dig in a little, and push myself to be the me I want to be, and not the me I often am.

I think "mike" will really hate it.

Any suggestions?

Posted by Andrea at 9:18 AM | Comments (46)


January 17, 2007

Disability and Difference

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A foundation for the accessibility movement has been the observation that disabilities are created by social barriers, and are not intrinsic to the condition. So, for instance, in a building where the elevator buttons have braille, visually impaired persons will not be disabled; in a building where the elevators don't have braille, they will be. In a building without elevators, persons in wheelchairs will be disabled; but in a building with elevators, they won't be. And so on.

The thrust of the argument is that disability is what happens when average folks design institutions, spaces and buildings only for people who are the same as themselves. As a thought-experiment, imagine what a building would look like if it were designed entirely by people who are in wheelchairs and who never consider the needs of persons who aren't. How high would the ceilings and counters be? How comfortable, how able, would you be or feel in navigating such a building?

There are grey areas, at least to my uneducated mind and mostly normal experience. So for instance, a deaf person will not be able to enjoy music the way I do; but whether or not this is a disability is questionable, and besides, I imagine they'd argue that they enjoy music in a way that's not accessible to me because my ears get in the way. A person who spends a lot of time in a wheelchair is not likely to be able to run a marathon; but then again, I can't run a marathon either.

But those grey areas disappear in Frances's case. She's not disabled, period; I'm more disabled than she is. Diabetes has a much greater impact on what I can and can't do in a fundamental way than shortness has on her. There are foods and drinks I don't consume because the impact on my blood sugar is undesirable or unpredictable, activities I don't undergo for the same reason. For three years I didn't work out because the thought of figuring out the impact of varying intensities of exercises on my blood sugars with a pump, when the impact would vary depending on the time of day and what I ate beforehand and how much energy I had, seemed too overwhelming. There are lots of ways in which diabetes affects what I can and can't do.

But Frances can do everything. Her eyes, ears, vocal chords, nerve endings and taste buds function within normal parameters. She can grasp, climb, run, dance, walk, spin, giggle, understand letters, learn abstract concepts, speak, listen to music, and so on. Everything that she currently can't do is a result of her environment, not her.

Yet, in the world, I am seen as normal and Frances is seen as different, sometimes disabled. And I can think of no better case to exemplify the arguments of the accessibility movement, that disability is created by the decisions of planners and architects and designers.

Yet people tend to see Frances as the problem because she's not scaled properly to the environment; this strikes me as similar to claiming that a person is too big for certain clothes rather than certain clothes being too small for that person. A built environment should fit people. People shouldn't force themselves to fit the built environment.

I am not particularly concerned by these obstacles. I'm irritated by them; but not concerned. There are millions of very small people in the world who drive and get married and have jobs and kids and cook their own dinners every day. Frances will find a way to make an out-sized environment work for her. I know that.

What concerns me is people, because people make judgments about who you are and what you can and can't do based on really stupid stuff like whether or not you can correctly wield a bread-knife designed for a hand twice as big as yours. No one decides that I might be stupid because of my diabetes--because they can't see my diabetes. But people do assume that people in wheelchairs or using canes might be slow; people with disabilities continue to be underemployed, underpaid and more likely to be living on social assistance than "regular" people with the same socioeconomic and educational backgrounds.

I can fix the environment, if I want to. I can remodel our entire house to take her size and growth rates into account. What I can't fix is people's heads. I can't climb into the brains of those who still believe that government was on the right track with eugenics programs, and that those who are visibly different have less right to procreate. I can't get behind the eyes of the idiots who say "What's wrong with her?" or "She'll be perfect one day" and fix them so that they can see that there's nothing wrong with her and she's already perfect. And, because it's people who design the built environment to be so inflexible and unaccommodating to anyone without five functioning senses, four functioning limbs and a standing height of four-foot-nine to six-foot-four, it's their heads I need to fix.

It drives me nuts.

Mothers of daughters will already be aware of how insidious sexist training is, how it seeps into young girls' brains even when their parents do everything in their power to ward it off. How even when you avoid advertising and refuse all Disney and Barbie presents and buy books with strong female characters, the concerns about princesses and pink and weight and being Nice creep through the chinks in the armour. So, while not being able to fix the heads of other people drives me nuts, what makes me frantic is knowing that this, too, will probably creep in through the cracks and take root in my beautiful girl's brain--that because her height is less, so is she. The other day we watched Shrek. I was horrified. It had been years and, oh my god, the short jokes. In the Shrek World, it's ok to be an ogre, a spell-cast princess, a talking donkey, a witch, a magic mirror, even a legless singing gingerbread man; but it's not ok to be short, especially not for a prince. And the idea that a short prince could be the romantic lead? Preposterous! And fodder for almost two hours of ridicule.

Obviously Farquad had more wrong with him than his stature; but it was his stature the other characters mocked in this movie that was supposed to subvert fairy-tales and support difference.

I peppered the film with observations: "Boy, Shrek and the donkey aren't being very nice, are they?" But is it getting through the armour anyway? And if it is, is there anything I can do about it?

Frances navigating the built environment is a concern; but only that. I suspect that Frances herself will show me the way, when the time comes. What worries me is the conclusions other people come to about Frances, her worth and her abilities, based on how she navigates the built environment; and what scares me is what conclusions Frances might come to about herself as she comes to understand the way some people will see her.

~~~~~

One last thing before I let this go--which was never meant to be a multi-post extravaganza, but it's been a while since I've gone into this, so maybe it was due.

I understand the reactions to the previous posts. I imagine many of you saw yourself in the shoes of the strangers and relatives, and wondered what you would say and how you would act, thinking that it doesn't seem all that unreasonable. I get that. But my job is not to imagine or protect their feelings and motivations. I am Frances's mother. My job is to soften the blows, not excuse them. If Frances doesn't see me sticking up for her, how will she ever believe she has the right to stick up for herself? If she sees me accepting hurtful words towards her because the speaker's intentions were good, how will that affect her views on my feelings for her, on where she falls on my priority list? That a stranger's or aunt's feelings are more important than hers? Is that how you would want your mother to act, if you were in her shoes?

Frances may graciously accept the task of educating other people and being understanding and forgiving, or she may not; this is not my decision to make. But I do not think it would be appropriate for me to teach her that it is her role in life to be an object lesson for a clueless human race. Her role in life is to follow her dreams, be a good person, contribute to the world positively, and believe in her right to happiness; my job as her mother is to teach her how to do that. I don't think that's compatible with excusing or silently accepting hurtful words made about her stature in her presence.

Please remember that my and your words here are all spoken in her presence. She will read these someday. You're entitled to your own reactions (and if I felt any of you crossed the line, I'd have deleted your comments); but I hope you understand that my job here is not understanding people with foot-in-mouth disease (though I do) or forgiving clueless relatives (still working on that). My job here is, as always, to be a good mother to Frances. When people are idiots in her presence, she doesn't need me to turn the other cheek and preach a homily to her about forgiveness and tolerance. She needs for me to fight to make the world a more accepting one.

I imagine that we will have many occasions for private conversations about forgiveness and patience and the necessity of educating people. But the moment of being hurt by someone else's words, no matter how well-intentioned, is not the time for those conversations. That includes the blog. Frances is part of the audience, and it is her reaction I ultimately care about.

Not that I pretend I will always know what her reaction will be--but that's another question.

Posted by Andrea at 6:50 AM | Comments (22)


January 9, 2007

Noticing vs. Knowing

--

I used to hate it when strangers commented on Frances's small size. "How old is she?" asked one elderly woman in Las Vegas, oozing grandmotherly adoration.

"Almost two," I said.

"And walking already!" she replied.

Yes. Because it's unusual for a child of two to walk, you know.

I know where it came from. She was expecting to hear that she was about ten months, which is how old she looked, and the reply was already set in her mind and just came out. It was kindly meant, and she had nothing but affection and interest for my wee girl. And while it stood out--obviously, since I still remember that thirty-second exchange--it didn't bother me.

Those of you who have been reading for a year or more will remember when it did, and keenly. I know how small she is. You don't need to tell me she's tiny. Don't you think I have eyes? Do you think I need to be more worried?

My response isn't so one-dimensional these days. Kate pointed out the Special Needs Mama column at Literary Mama (thanks, Kate; I enjoyed it). I think the writer's taxonomy of response is probably specific to parents of children with physical disabilities, though, and not just physical differences.

How would I even go about categorizing the responses we get from strangers? By far the most common is "She's so cute"--and she is, and I know as well as anyone else that those responses are formed partly by her size. Just as toy Yorkshires are cuter than Dobermans and kittens are cuter than grown cats and ponies are cuter than horses, Frances is cuter than kids her age of an average size. But hey, it's possibly the only advantage for her of being so small, and I'll take it. And from talking to other parents of dwarf children, discipline becomes a problem too; because your child looks so much younger than they are, the tendency (both at home and away) is to let them get away with murder. Fortunately Frances is a good-natured sort who isn't into murdering in either the metaphorical or literal sense.

Still, both responses--the 'aww you're so cute' and the 'ok but I won't let it happen again!'--are still predicated on difference. I don't suppose they notice it. I don't believe it's intentional.

Then there are people who are frankly curious, characterized by "She's so tiny!" I used to hate that; not anymore. She is tiny, and as long as the tone is appreciative or curious rather than appalled or pitying, I will take it the same as if they commented on her big blue eyes or her giggle. It's part of her ineffable Francesness, and why shouldn't people notice? When people do notice and comment positively, it gives me a space to discuss the adaptations she needs (for example, at daycare, where she needs stepstools to use the tables in the preschool room).

Ah, but there are the ones who are appalled. Still, at least they're honest. I can give them the stink-eye and avoid them, knowing that they see nothing positive in difference. (Keep in mind these have so far been strangers; if it was a teacher or coach or friend's parent, obviously, I wouldn't have the option of walking away.)

There are people who pretend not to notice. "Hmm, you know, before you said that I never would have seen that your daughter has to use a stepstool to reach the toddler chair and is eight inches shorter than my child who is younger than she is, but now that you point it out, she is a little bit smaller, isn't she?" Which is well-intentioned if a bit misguided, but at least there is the potential for opening a dialogue.

And then there are the people who tell me she's not small.

This isn't so much the equivalent of "I don't even notice that your daughters are black," (though I think it comes from some of the same impulses and is problematic for some of the same reasons) as "your daughters aren't black; they're deeply tanned." It's not the modern white liberal struggling to think about racism and demonstrate their total non-racistness and coming up with something utterly clueless and indicative of pretty well the opposite of what they intend, but an ante-bellum society lady commenting on the dark complexion of a friend's newborn, obviously fathered by a black man, and denying the possibility of blackness in someone she loves.

It's "the only way I can accept you is if I believe you're not different from me at all."

These are not people who are new to our situation. These are not people around whom I haven't discussed our medical journey or the adaptations we make to create a liveable home for Frances. These are not strangers on the sidewalk who have never before confronted difference or Dwarfism and so have no pat reply handy. These are people who have known her since birth and who are related to her and continue to deny part of who she is. They constantly comment on how much easier and more docile she is than a boy; obviously they are fine with differences that reinforce their preconceptions.

To return to the LM column, it's as if the Mother in the Playground responded by saying, "He's not blind" or "maybe his eyesight will spontaneously regenerate someday."

I expect some of this from strangers. Dwarfism is significantly rarer than being a visible minority (or invisible majority, as the case may be) or even Down Syndrome (which is about ten times more common than all forms of dwarfism combined). Most people have never had to think about dwarfism beyond Christmas elves or characters in fantasy novels and have, as a result, no answer to give when confronted on the street with a dwarf. I accept that. Part of our life as a family will involve educating people.

But these are not strangers. These are family. The only family we see regularly who have accepted Frances's stature and are unconditionally supportive of it and all it entails are my parents. The rest of them continue to cope by saying she's not short or that she'll catch up one day.

Frances is three years old and is more and more learning about the world and her place in it. There is very little spoken english she doesn't understand. Someday she will learn that shortness is not prized in our culture. She will learn that things are harder than they have to be because nothing is designed for adults under 4'9". She'll learn that people will continue to see her as a child well into her adulthood. She'll learn that dwarfs are often the butt of jokes, a cultural shorthand for what is inherently ridiculous, leftover from the medieval era when dwarfs were employed as court jesters and more recently when dwarfs worked in circuses. She'll learn that in the 1930s dwarfs were sterilized in Canada to prevent them from handing dwarfism down to future generations, and that in Europe they were rounded up and sent to Auschwitz where Dr. Mengele found them most interesting.

I can't prevent her from learning any part of that, and I don't want to. She has to know. But I want her family to be a safe space for her, a place where, if her experience can't be understood, it can at least be acknowledged and supported and she can be unconditionally loved and accepted for everything she is.

Posted by Andrea at 7:38 AM | Comments (19)


October 30, 2006

Good News and Ugly News

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In one of those moments of serendipity--or perhaps sensitivity after exposing myself to this issue for a few months--yesterday there was a section in the Toronto Star about access to post-secondary education for students with disabilities, and how attitudes are slowly changing. The articles gave me a great deal of hope--perhaps we, as the last generation to expect students with differences or issues or delays to be segregated educationally, are the last of the dinosaurs, the last to feel uncomfortable in the presence of a child not regularly featured in Parents magazine. Perhaps stand-up comics who can't stand up and PhD students who can't spell without assistance will simply be accepted, normal parts of advanced education for our children, and workplaces will automatically accomodate them because schools have automatically accomodated them, and they expect the world to work that way.

Perhaps it will be like the second wave of feminism--not perfect, not fixing everything by any stretch, but accomplishing nonetheless such a sea change that the way things used to be, the world of lowered expectations and isolation and segregation, is no longer imaginable.

I hope so. Because when, after finishing that, I find this letter about a man with primordial dwarfism, I dread the world my daughter will live in.

Posted by Andrea at 6:33 AM | Comments (7)


October 17, 2006

Potty Training Hurdle #1

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Underwear.

I've combed all the stores nearby and tried the smallest sizes available, even throwing them into hot wash first to try to shrink them. All still too big, so big that they fall down while she walks.

I've googled "newborn underwear" and "underwear size 12 months" and a few other terms, and turned up nothing. I looked on a few diaper-free sites (the folks who believe that all children should be wearing underwear from birth and potty-trained as soon as possible) and found only two links to sites that carry underwear in Frances's size.

The first is in England. I ordered 3 in 6-12 months and 3 in 12-24 months. I received 1 in 6-12 months and 5 in 12-24 months, plus a t-shirt s 7-8. On the plus side, the 6-12 month one fits great. On the downside, they only shipped me one of the three I ordered, and for some reason I'm hesitant to try again.

The second is in Australia.

Australia.

The Australian site is run by a woman who custom-makes underwear for extra-small folks based on their actual measurements. She does ship to Canada.

While I'm glad to have found it, since obviously potty training can only go so far while she's wearing diapers, I have the sneaking suspicion it's going to cost me a few more dollars than the walk-into-Loblaws option of picking up a six-pack of Elmo undies. Probably a lot more. Is it better to get a whack of underwear now and hope to god that the quality is good, since I'll have no way of knowing until they arrive--or should I order just a few just in case, and accept that the overall shipping cost is likely to be much higher as a result of splitting it into separate orders?

From Australia. Have I mentioned that?

Posted by Andrea at 7:06 AM | Comments (19)


August 14, 2006

Labels: Or, would you like a side of finely sliced and fried white-fleshed ground vegetables with that?

--

About ten years ago, I was finally comfortable enough with the whole wicca thing that I actually started telling people about it. I even used the big-W word: witch. Most clearly of all those conversations, I remember the one with a close friend who wanted to know, "But why do you have to label yourself?"

It's a common question, but it doesn't make any sense. Ninety-five per cent of our useful language consists of labels, and we never question them. Labels are useful gadgets. They allow us to get what we want efficiently and easily. I don't know about you, but I am very glad that I can walk into a fast food restaurant and say, "I'd like a burger and fries with a Diet Coke, please," and know that I'm not going to end up with a raw fish and a pda swimming in bechemel sauce. I like to be able to say, "You kicked me in the shin!" Not: "You kicked me in the front of my lower leg!"

One might counter-argue that it's different than labelling people--but, not so. We all label ourselves, constantly, compulsively; we collect labels like my grandfather collected stamps, and end up leaving to our children on our passing a basement so filled with labels that there is only a narrow passageway from the foot of the stairs to the wall. I couldn't list all my labels if I wanted to, but here's a start: I'm a woman. I'm 31. I'm straight. I'm married. I'm a mother. I'm a government employee. I'm a writer. I'm a reader. I'm a scrapbooker. I'm an indifferent gardener. I'm diabetic. I'm asthmatic. I'm an insomniac. I'm not a cat person. I'm a print addict. I'm tall. I'm an environmentalist. I'm a feminist. I'm a first-born.

Imagine how many words it would take to rewrite all of those three-word sentences without labels. "I have been alive for thirty-one rotations of the planet Earth around the sun." That's unwieldy, and I don't know about you, but I'm just as glad that I don't have to write all that out on my tax forms every year. "I have a chronic autoimmune disease that has destroyed the function of my pancreas, leaving me dependent on injections of insulin to stay alive." Whew. What a mouthful every time I want to justify ordering a Diet Coke in a restaurant, or explaining why I have that little electronic gizmo inserted in my hip.

Imagine being a vegeterian in a world where the word "vegetarian" either doesn't exist or is so loaded with negative innuendo that you wouldn't dare use it; how much of a pain in the ass would it be to go out for lunch? Imagine, if you have asthma, that you don't have the word "asthma." How much would it complicate your life when you have symptoms and can't enjoy your normal activities to have to explain to everyone around you what's going on? Imagine if you're an alcoholic but you can't use the word "alcoholic" and someone is offering you a drink. Imagine that you're allergic to cats, but the word "allergic" doesn't exist, and someone with two cats has invited you over for dinner. Every time you have a choice of either letting it pass--not explaining it and looking odd--or explaining it. Wouldn't it get tiresome? Wouldn't you find yourself longing for the right word, wishing one existed?

I think what people mean when they ask, "Why do you have to label yourself?" is: "Why would you want to assume a label with negative connotations?" No one asks me why I want to label myself female, after all, or label myself a mother or a wife. Witch is another question. 'Good God Andrea, why on earth would you voluntarily call yourself a name that has been used to justify the murder of hundreds of thousands of women in European history alone?'

A much better question, and a more interesting one. Why do I call myself a witch? In part, because I am one and the prejudices and bigotries of other people are not going to make me ashamed of myself; in part, because the negative history of the word is wrapped up in a cultural misogyny so deep that it slaughtered uncounted numbers of women and children primarily for not living the prescribed cultural script, and using that word--that very laden word--is a way of opening up that conversation. Of giving myself opportunities to say, "well yes, but did you know that the women most likely to be burned at the stake were unmarried women or widows with their own property? Why should I allow other people to use that as an insult? To my way of thinking, it's the ones who think of it as a perjorative who ought to be feeling a bit slimy about it."

Diabetic, too, gets a bit of heat in some quarters, and I honestly understand the desire not to be defined as a person by one's illness; but as long as it's in context with the hundreds of other labels that help to make up who I am, I don't care.

The problem isn't with labels or labelling, the problem is that some labels have been hijacked; they have such negative cultural baggage associated with them that no one in their right mind wants to adopt them any more. The problem is that the old accuracy of those labels has been buried under decades or centuries of misuse so that they have become primarily insults. The word "liberal"in the United States comes to mind. "Midget" is another example: if people had always used it only to mean someone who was very small and normally proportioned, it's likely I would have no problem using it to describe my daughter. But it was hijacked and used as a perjorative, used to draw in audiences for freak shows or circus acts.

Labels are great, as long as they're the right labels. The right label is the fewest possible words that convey the most information you want and the fewest extra negatives: Writer, Actor, Artist, Civil Servant, Engineer, Architect, Academic; just about any job title you can think of is a label (and when we meet someone who says, "I'm a teacher," most of us don't demand, "Why do you have to label yourself?"). But for some of us, there is no right label; what used to be the right label has been warped into an insult. But just because there is no good label doesn't mean that the need for one has disappeared.

The alternative is to forever and endlessly explain things, and it's tiresome. I don't want to have to recount Frances's entire medical history to the nice lady at the children's clothing store who tells me that children are rarely potty-trained at one year old so why bother buying panties? Or that kids grow so fast, I shouldn't bother buying anything in size 3-6 or 12 months, because it won't last. When another mother gives me the evil eye at the food court because my "little baby" is eating french fries, I don't want to have the choice of saying nothing (and letting her believe that I am a terrible mother who knows nothing about infant nutrition) or explaining the whole thing. And it's easy enough to say, "Who cares what they think?" But when a stranger judges your mothering harshly based on misinformation, it hurts.

And humans are curious. We're animals with big brians and we like to figure things out, and part of that is taking anomalous information--wow, she looks like she's one, she acts like she's three!--and fitting it into our internal map of how the world works. And I wish I had a short, easy phrase, one or two words, that would satisfy the benign curiosity of strangers without taxing their patience (by its length) or robbing Frances of her dignity. I wish I had a label. A nice, easy label, a pretty one, one I can bring out on Beanie Baby when I'm writing about the issues that do come up around her size, something to orient new readers without boring the old ones. I wish I could say, "Because she's _____," and people would nod--they would understand, I wouldn't need to keep explaining all the time. I wish Frances had a label for herself, when she's older--for when teachers stop her in the hall at school, certain she doesn't belong there; for when assholes take her picture uninvited at the amusement park;* for when the lifeguard tells her that she can only swim in the pool unattended when she turns ten; for when the manager at the fast food restaurant tells her they can't hire anyone under fourteen; for when the cashier at the movie theatre doesn't want to sell her a ticket; for when her classmates ask her, "what's wrong with you?" And they will ask. You know they will. People have asked me often enough, and kids are not usually more tactful than adults. I want her to be able to say, when it's convenient, when it's helpful, "I'm ______." Something to deflect the curiosity when it's not wanted, to turn the subject of conversation, something pat and handy.

She is a dwarf. Even if she were some day to no longer be small enough to qualify, an event that is so exceedingly unlikely that it irritates me whenever someone suggests it, right now she is solidly, comfortably below the height threshold. Far enough below that I do not seriously wonder if she will stay there. She will. She is a dwarf--but with all the connotations of the word, all its Tolkeinesque baggage, I don't know if I want to use it. She's also a Little Person. It's less potentially offensive, but does it smooth communication or hinder it? How many people will understand what it means when I use it? Do I want to have to explain what Little means every time? No. The point of communicating, of writing, is to tell people what you mean clearly. Words are no good if no one else understands them.

I want her to have a label. I want something like "vegetarian," something like "allergic." Something that will tell people what it is they need to know or what we want them to know, but that doesn't have a history of abuse and intolerance behind it.

I think I assumed, in my last post, that everyone would understand the desirability of having labels. But maybe one needs to experience not having one when it's needed to understand how useful they are.

This is a whole lot of whining about something that, in the ultimate scheme of things, is ultimately trivial. Not having a label is complicated and irritating, but it doesn't take food out of our mouths and it doesn't kill anyone. But every time I write a post here about Frances that relates to something unusual involving her size, my fingers hover over the keys: "Because of Frances's...." Frances's what? Dwarfism? Short stature? Undiagnosed genetic condition? Size? Tinyness? I put one word in, I take it out and put another in its place, I delete the sentence and try again, I write around it for as long as I can, I change my mind, I put it back, I try another word, and then the next day I use a different one. For Frances more than anyone, I want not just the good-enough word, but the right one; but it doesn't exist. And it's a small thing, it hardly bears mentioning, but it gets under my skin sometimes and itches something fierce.

~~~~~

*This happens a fair bit, and if you're ever tempted to do that, for the everfucking love of god, just don't. You are not as subtle as you think. One woman on a list I'm a member of wrote of how she went to the theme park with her kids, and she and her kids all have a skeletal dysplasia which makes them quite short and changes their proportions, and someone followed them around taking pictures of them with a camera phone. Eventually, she got pissed off enough to whip out her digital camera and take that woman's photo--apparently, the camera-photo-taker was simply appalled and shocked that anyone would treat her so disrespectfully. So yes, some people are so completely fucked up that they simply don't matter, but they can still make you miserable and ruin your day.

Posted by Andrea at 11:16 AM | Comments (10)


August 11, 2006

Dwarf, Little Person, Special Needs, and Other Useless Jargon

--

I know I make it look easy (*cough*), but I sweat every time I try to describe Frances's size.

According to the Internet (which never lies), "midget" is the technical word used to describe someone who is very small but has normal proportions and "dwarf" is the technical word for someone who is very small but whose proportions vary from the norm. However, "midgets" historically were usually persons with a growth hormone insufficiency, which has largely been addressed through growth hormone treatments, leaving very few individuals of that size with normal proportions in the western world today; furthermore, it's considered an incredibly offensive term by many small persons, and I don't want to use it if I don't have to.

On the other hand, "dwarf" presents a fairly specific image to most people of a particular syndrome, usually achondroplasia (though most people are probably not familiar with the name), and that doesn't describe Frances.

Little Person, or LP, seems to be the preferred term--hence the Little People of Ontario, Little People of America, and so on. But especially in real life, when I say Little Person, whoever I'm talking to hears little person, aka, child. It's not terribly accurate in describing the degree of her short staturedness, and in real life has led to all kinds of misunderstandings with well-meaning folks who think there's no difference between little and Little. It would make a lot more sense coming directly from Frances, I think, and might be perfect in five or six years when it's more obvious to observers that she looks like a two-year-old but she must be a lot older than that.

My other option is: "an undiagnosed genetic syndrome resulting in dwarfism." But egads, what a mouthful; and it feels off, as if, by the length of it, I'm drawing more attention to it than I'd like.

"Special Needs" gives me hives, as it is a hodgepodge catch-all phrase for any person who needs anything not needed by 95% of the population, yet most people use it as a euphemism for "cognitive delays" or "disabled." Again, it doesn't paint a terribly accurate picture of Frances's situation when her special needs at this point are limited to footstools and shortened furniture. Over the next few years we'll probably have to add lightswitch extenders, and think about making modifications to her bathroom, and I'm still not ready to think about classroom issues, but even so, it's not what most people have in mind.

So far, I've defaulted to "dwarf," solely because, while it misrepresents her situation to some degree, at least people get an idea of exactly how short she is and is likely to be. But it's unsatisfying. And there is, too, a twinge of fear: sure, she grows incredibly slowly and she's already four inches shorter than most kids her age and this is a difference that will only magnify with time and if you're growing on average one inch less per year than other children that adds up to 18 inches shorter than average, which is four feet tall, more or less; but a tiny little voice sometimes whispers: "you don't actually have a diagnosis; what if she catches up and someday reads all of these entries where you call her a dwarf?" Mind you, it's far more likely that Bush will wake up tomorrow possessed by the conviction that we must wean off the oil economy, pull out of Iraq and turn every bullet in North America into an oversized sequin with which to decorate flower-pots, but this doesn't shut that little voice up.

So it's a muddle.

And it's a scary muddle, because I so badly want to do the right thing, and not only so that I don't look like more of an ass than I alreay do, but because I want to do the right thing by Frances. Except that she's 2 1/2 and I can't ask her opinion yet:

"Frances, are you a dwarf or a Little Person?"

"I'm FRANCES." Or: "No, I'm a little girl!" These are her current standard answers to any questions about her identity, from "Who are you?" to "What's your name?" and "Are you a squirrel or a bunny rabbit?"

Which would be just fine, except that this applies only to those situations in which I want people to understand that she's not little, she's LITTLE.

This is where telepathy would really come in handy.

What I need is a word or short phrase that summarizes, "I know she looks like she's one year old but she's actually two and a half, and she understands everything you say, and she knows she's small, so what I want for you to do is offer her the appropriate assistance when it's needed but without making a big deal about it or calling unnecessary attention to her stature or treating her like she must be stupid because she's tiny, ok? But at the same time it's very important that you not minimize her size by either completely ignoring it or pretending that it's some kind of unalloyed blessing for her because at times, it really stinks. In short, I want you to understand that she is very very very small but she's an individual human being whose needs are partially determined by her size but who is not defined by it in any way."

Any suggestions?

Posted by Andrea at 2:41 PM | Comments (14)


June 30, 2006

Social Butterfly

--

Darwin's Radio is based on an interesting premise: what if evolution didn't take place gradually, over eons, but in a single generation? What if there were biological mechanisms that switched genes on and off in response to environmental stimuli so that a mother could give birth to a child of a different species than herself? Ignoring the book's many irritating problems, such as the otherwise-interesting and intelligent female protagonist who did all the background science of the novel but who, when faced with scientific skepticism, decided to prove it the old-fashioned way and so, yes, fulfilled her true destiny and calling by becoming a mother--ignoring all that, as I say, the basic idea remains compelling to me because otherwise I am at a loss to explain how exactly it is that my daughter is such an extrovert. A very sensitive and sometimes shy extrovert, but an extrovert nevertheless.

Yesterday evening, Erik's brother and his family came to town for a visit (henceforth to be referred to as BIL, SIL, LH and BB--the latter two acronyms for anyone who might remember their visit around this time last year). LH and BB, our two nephews who are five and two respectively and both nearing their birthdays, have nothing in common with Frances. They are big for their ages. They like rough-and-tumble play involving trucks and as much noise as they can muster--not that Frances doesn't like this on occasion, but these two enjoy it to the exclusion of just about everything else. They like to throw things around, dump things on the floor, scream "Don't take my picture! Don't take my picture! Take my picture now!" while running around like over-caffeinated banshees at the local playground. In short, they are wholly normal. You could write out their behaviour and traits and cut out their photos and paste it up in Dr. Spock's childrearing book.

So, one might say, they provide an interesting contrast to my own wee girl. One might assume, moreover, that said wee girl might find them intimidating, or overwhelming. Unless one happens to know that she is an extrovert.

Picture this: The adults are in the kitchen at the table, eating their pizza slices peacefully, when they notice that the children are quiet--too quiet. "I'll see what they're up to," I say. Are they in the front hall? No. Tormenting the cat in the laundry room? No. They can't be upstairs? But they are! All three, in the guest room, bouncing on the air mattresses. (More on that later.)

LH: I let us up. I know how to unlock the baby gate.

Andrea: So I see!

LH: I wanted to get my money. They followed me.

Frances: It's BB and LH! It's BB and LH! Look, Mummy! It's BB and LH!

Andrea: It sure is! Do you guys want to come back downstairs?

Frances: NO!

BB shakes his head.

LH: OK. I'll bring my money with me.

LH tears off for the stairs; BB follows him; and Frances goes running after. As I marshall them all around the gate--the hall is narrow there and the gate takes up most of the room unless you walk around it a particular way--LH runs down the stairs, and BB walks after him, walking properly while holding the bars under the railing. And Frances, for the first time ever, refuses to go down the stairs backwards on her knees but insists instead on walking down them properly while holding on to the bars too--even though at 29", believe me, it's not an easy feat.

Picture this: After supper, the kids are going berserk in the guest room, where all three have decided that bouncing on the air mattresses is the coolest game ever. The two boys prefer the Running Jump method, a practice that SIL is eager to stop, with much "Stop that! Stop that right now! BB! LH! No more jumping on the bed!" to no avail. Frances sits up near the pillow clutching a stuffed puppy in each arm tight to her shoulders, with a huge grin on her face, bouncing gently on her bum. You might think she would be scared of the running, the jumping, the mattress's convulsions following the jumping; but no. Each leap delights her. The mattress convulses, and she laughs, a throaty chorttle. "Mummy, look! It's BB and LH. It's BB and LH, Mummy!"

The adults, confronted with a roomful of hyperactive childhood, decide it might be best to brave the threatening rainstorm and take them to the park before bed. Off we go. BB and Frances ride in the wagon; when we are most of the way there, we see a young rabbit, not quite fullgrown, in the middle of a grassy field. Frances watches it quietly from the wagon; BB vaults out and chases it across the park.

Once both of them are loosed from the wagon and the poor little bunny has been terrified into a neighbour's yard, LH and BB run as fast as they can to the park. BB is only three months older than Frances, but he has eight inches on her and his run really takes him places. But Frances's wee legs, as beautiful and marvellous as they are, are not quite as efficient. So what does she do? Run, of course. The bigger kids have long left her behind without noticing, and not much they could do about it even if they wanted to, when Frances's run is so much slower than their walks. But she runs her heart out to try to keep up. At the park proper, LH climbs up the metal ladder on the big kid's playground; BB follows him; Frances stands at the bottom and watches. "I go up, Mummy," she says.

"I don't know, kiddo. I think it might be a bit big for you. Do you want to go up the bridge on the other side?"

She shakes her head, and grasps the lower rung.

"Do you need some help?"

"Yeah."

I help her--which amounts to me lifting her up, touching her feet briefly to each rung so she has "climbed" it, and then planting her firmly on the playground's deck; then clamber after her to help her negotiate all of the other big steps and drops that are no big deal for LH and BB. When there is one that she can manage herself, and she does, she cries "I did it all by myself, Mummy!" But this is only fun for a few minutes. It's one thing to play by yourself on the big kid's playground with Mummy and some other kids, strange kids; but when it's your own beloved cousins you can't keep up with, it loses its lustre. She went on the swings instead with Daddy.

Then it started to rain, and we went home. Once again, Frances and BB shared the wagon.

"That's BB, Mummy," she said, and laughed.

If it were me, small and quiet and sometimes shy, now hosting two large and rambunctious boys who--to be brutally honest--don't much want to play with me, I'd be desperately trying to think of some way, any way, I could curl up in the corner and read a book without looking like an antisocial freak. Of course, I am an antisocial freak, but I don't want to look like one.

Not Frances. She throws herself into the fray, laughing. She doggedly tags along. She runs with them even when she can't keep up. She is joyful just to be in their presence, even though they don't even seem to notice her. LH tries hard to get the attention of Erik and I but I don't know if he even sees Frances, and he's at the girls-have-cooties stage so he definitely won't touch her. In fact, when it was bedtime and we were asking the children to give each other a goodnight hug and kiss (which BB obliged willingly, to a chorus of adult "awwwwww"s), he wrapped himself up in a blanket and writhed, "No! Don't kiss me! Don't kiss me!" he cried. But Frances went over, wrapped her arms around that squiggly bulk and kissed the heaving blanket top, not seeming to feel it as a rejection in the slightest.

She did not want to use the potty. She did not want to brush her teeth. She did not want to put on her pyjamas. And she most emphatically did not want to go to bed.

Picture This: It is morning. Erik woke up Frances, who greeted him as she does most mornings: "Want to go surprise Mummy?"

So I lay down on the bed and closed my eyes so she could "surprise" me. As it does most mornings, this took the form of wanting to lay down on the big bed for a few minutes. She curled herself around the mole on my arm and said, "Want to go in the upstairs front room and see BB and LH?"

That was the theme of the morning. She did not want to put her clothes on. She did not want to use the potty. She did not want to eat her cheerios. She definitely, absolutely, positively did NOT want to go see all her friends at daycare. She wanted to go in the upstairs front room to see BB and LH. When Erik carried her out the front door this morning, she was crying.

It is, in part, heartbreaking: Frances might not see it as rejection, but I do; and it gives me a foretaste of things to come. Other kids who don't want to wait for the small girl to catch up, who want to play games that she can't join; other times when she wants desperately to play with them and keep up but the short legs and short arms won't let her.

It would be so easy for her to be discouraged. Wouldn't you be? If you were Frances and had two very large boys as guests, who play roughly, who don't much want to play with you, who won't wait, who like games you can't play, who don't notice that you feel excluded, wouldn't you be discouraged? I would be. I'd give up. But not Frances. She not only persists, but is overjoyed to do so.

It has me in awe. To face a towering obstacle and keep going at it, to face rejection and persist, to be left behind and keep going anyway, and then to be happy about it, and not just happy but brimming with happiness, smiling and laughing and loving every minute of it--that's amazing. She is truly the best person I've ever met.

And it's that spirit, that love of life and people even when they are less than loveable, that I think is going to take her far in life despite her challenges. She keeps going and keeps smiling when anyone else would have given up.

Posted by Andrea at 8:30 AM | Comments (11)


June 7, 2006

At the Park

--

First, the confession: we played hooky yesterday. I know. I'm an embarassment to the modern knowledge economy. But next week I'm on training (all week) and won't get home probably until nearly 7 every night, and I was feeling a need for some preemptive Quality Frances Time. So we played hooky.

And it was a beautiful day, sunny and warm and not too windy but not muggy or humid either. Just lovely. So around 10:00 we got out the stroller and packed up some snacks and went to the park through the woods. Frances rode on the swing for a while, then we went to the big-kid playground. I helped her up the stairs and clambered on after her because nothing at any park is ever built to the scale of Frances.

I've said many times that we are in a sort of period of grace right now, when it comes to Frances's dwarfism or short stature or whatever the hell it is, exactly. And it's true, in that people are not yet assholes about it. Most of the time. Frances knows she is small but she doesn't know how small she really is in comparison to everyone else, and most other people seem intent on scolding me, mostly, for calling it dwarfism when she is so obviously going to catch up, you know. Which she won't, but on the basis of one or two extended-family visits a year a great many medical mysteries can be solved, apparently. Anyway. We're in a period of grace, because most people are not yet assholes, and Frances is not yet self-conscious.

But playgrounds. Playgrounds scare me. A lot.

Nothing, nothing, nothing is built for someone her size. OK, I know that one-year-olds (who are still bigger than she is) are typically just learning to walk, not scaling ladders and begging to go on monkey bars, and I know that the designers build these things for "bigger" kids because they figure kids who are old enough are "bigger." It's not their fault for being prejudiced dumbasses, right? They don't know any better. They figure, all two year olds come in one size, god bless them, and who am I to complain? But the gaps between the ladders are huge. Drops from platforms to the sand below are at least twice her height. Everything is out of her reach, poles and rails and monkey-bars. The drop between the bottom of a slide and the ground is huge, for her. Frances doesn't know that this isn't normal, that in fact playgrounds are supposed to be safe, places where parents can sit on the bench and watch the kids play in the secure knowledge that the worst effect of their inattention will be a skinned knee, or maybe if bad luck befalls, a broken bone. But when I see Frances careening around on top of those things, I get panic attacks. I see her lying on the ground with a broken spine, and really, it could happen.

I say, "Oh I'm sorry sweetie, that's meant for bigger kids. You can play on that when you're bigger." A lot. Once a minute, at least. Her motor skills are there but her inseam is not. It stinks, but there are bigger things to be worked up about.

So I follow her up the stairs, helping her to negotiate them because the steps are too big and the railings are too high up for her to grasp. Then I follow her over the bridges so I can keep her from any interestingly dangerous openings in the railings where the poles or ladders or whatever are simply too far away for her to grasp if she got too close and fell and tried to catch something on the way down. I help her up the steps that are too big for her to climb, and then I race down the nearest ladder to the bottom of the slide to catch her when she goes down because she can't go down it by herself. Everything is meant for much larger children. Sit on the bench and watch? Are you crazy? Do you think I brought her to the park to send her to her death?

I am already exhausted and not in the best of moods, in other words. We don't go to the park for me. Let me put it that way. We go for Frances, because the little monkey loves it even if half of it is out of bounds.

Three times over the past week or so, we've run into the same little boy at this park. He was there today. He is about a foot taller than Frances, meaning he is probably about a year older--I'd say 3 1/2. Maaaaaybe four. He has short brown hair and brown eyes. And he is a little fucking bully, and he targets Frances.

He was on the big-kid playground when we got there today. When Frances wanted to go down the slide, he went down it, then climbed halfway up and sat there, grinning at her. When Frances wanted to go down some stairs, he raced by her to go down them, and then sat on the bottom one, and grinned. Frances is already at such a disadvantage on the big-kid playground because of her small size that what is already a little scary for her (and absolutely terrifying for me) becomes impossible. She can't face this kid down, he towers over her. She doesn't have the verbal skills to tell him off or the emotional maturity to understand what the hell he's doing.

Where were his parents? you ask. Excellent question. I wondered that myself.

So we left the big-kid playground and went to the little-kid playground. I say "little" like I actually mean it, but what I mean is "littler." It's still huge, for Frances. The stairs are still too high and the drop from the slide is still too big and there are still gaping holes in the railing where she could plummet to a lifetime of disability so I still walk up the stairs with her then race back down to either block the gaps or stand at the bottom of the slide, depending on which she seems more likely to do. There is also a red tunnel. I've mentioned it before. It is just large enough that she can walk through it without ducking (which means that no one else has ever walked through it without ducking before, and it's not likely that they will again). The tunnel is Frances's favourite part. She loves to walk through it, and stick her hands through the holes, and look through them and say "I see you, Mummy!"

What do you supposed this dickwad-in-training did? Why, he left the big-kid playground and went to the little-kid playground. And he climbed up the slides when she wanted to go down, sat on the ladder she wanted to use, and went to the middle of the tunnel, sat in it, and smiled.

I was, not to put too fine a point on it, livid. I mean, where the FUCK was this kid's "caregiver"? Having a martini by the community centre's pool? In what sort of twisted Darwinian social lexicon is it acceptable to tolerate this sort of behaviour in one's precious offspring?

"I want to go through the tunnel!" said Frances, upset.

"I know, sweetie. Go ahead."

"There's a kid in it!" she wailed. She doesn't wail when it's other kids. She doesn't go through--she waits--but she doesn't wail. She recognizes this one already.

"Not for long," I said, and climbed up the ladder, and started through the tunnel. He bolted, and Frances followed me, and I thought maybe the little shit had learned his lesson. No such luck. He came right through behind us--and then went back and forth, back and forth, every time Frances got close to it he'd bound at her and smile, until my beautiful little girl was in tears. I clambered up and held her, but this kid was not going to leave. And where the hell was his caregiver? Tahiti? New York?

"Boy, that little boy is being very mean, isn't he?" I said.

"Yeah!" cried Frances.

"Never you mind. Let's go home. We'll play in the front yard, and you can hide in the forest."

"I stay in the park!"

"He's not going to leave us alone, kiddo. And apparently his parents think this is a-ok. We're not having fun anymore. Let's go home."

"I stay in the park! I go in the tunnel!" All through her tears.

We waited a few more minutes, but he still wouldn't leave, and eventually Frances said, "I want to go home." Still crying. I hope that kid grows up and his penis rots and falls off. I mean that.

So we left. And on the way home, through the forest, she became excited again to see the squirrels and birds and chipmunks and flowers, but I was not only still furious, but so sad. Is that it? Is our grace period over already? She's only two and a half years old!

Frances is not an aggressive person. She doesn't have chutzpah. She doesn't face down people who are mean to her. When a larger child (and let's face it, they're all larger) wants something she wants, she lets them take it. She doesn't like it, but I can tell she is intimidated by their size and feels it's easier not to fight for it. She's easy-going so most of the time she can find something else she likes almost as much and ends up relatively contented. I don't want to try to force her to become someone else, someone less sensitive or more tough, to face down the bullies. That's teaching her that the problem is her, that there's something wrong with her, that it's her responsibility to fix the assholes, and not vice versa. I won't do that. Frances is a wonderful, sweet, loving girl and if she were six inches taller it wouldn't be an issue. But I know that there are assholes who are going to see a very, very small girl who is not assertive and who is easily intimidated and who will get a rush out of pushing her around. I just didn't think it was going to start so soon.

She's only two and a half. She's only two and a half and already there are assholes who see someone younger and much, much smaller than themselves and decide to get their entertainment out of making her cry. And I knew it was going to happen, but I thought she would be older, more verbal, a little bigger, more able to understand what was going on and draw attention to it or ask for help or make her own demands, or at least have some playground allies to intimidate others on her behalf. But no. It's starting now and neither of us are ready.

This might seem like a big conspiracy to draw out of flimsy data, but all three times this has happened with this kid there have been lots of other kids at the playground, several of them smaller than the dickwad-in-training but all of them much larger than Frances, and many of them obviously younger than Frances too. He does not run after the other toddlers, sit on the toys they want to use and smile when they cry. Only her. And it's constant, from the moment he notices her until we leave. Where is his caregiver? Does he have one? Is he a feral child, making a grim living out of the mostly-poisonous berries in the local woodlot? Maybe. It would explain a lot.

We salvaged our day. We went to the other park (we are fortunate to have two within walking distance) and while it too was overrun with kids, the children there were civilized and had caregivers present and attentive to playground dynamics, so that all children took their turns and played nicely with each other. And we went back to the baseline playground condition of mama-terror and Frances-delight. Then we went home and she hid in the 'forest' and ran in circles laughing all the while. Sure she's trampled any seedlings that had a hope of surviving my (ahem) benign neglect, but it's worth it.

She is so delightful, such a joy, so sweet and kind and fun to everyone who knows her. It kills me to know that there are people who will see her only as a target. It kills me more to know that I can't be there when it happens every time, and that as she gets older, she will be more and more on her own with this. Most of all, it kills me to know that it is starting now, and that as a result she might not ever remember a time in her life when this was not how some people related to her.

And now I want to kill someone.

~~~~~

And in the "Those Idiots are SO MISSING OUT" file:

Last night when Erik got home from work, I related to him some conversations Frances and I had while she was hiding in the front garden forest:

"So Frances said, 'I can see you!' I said, 'I can't see you! Where are you?' And Frances said, 'I'm hiding.' So, 'Where are you hiding?' I asked, and she said, 'I don't know!'"

Erik laughed, and Frances turned to him and said, "Is that funny?"

Posted by Andrea at 7:23 AM | Comments (34)


April 5, 2006

Celebration

--

I have been working for the last two months on an essay which I actually hope to publish so I'm not going to post it here or talk about it, really, except to mention that it's about a subject that anyone who's been reading this blog for the past year will be familiar with: Frances's size, any my feelings about it.

And it struck me in writing it--and then in rewriting it at least a dozen times--that I finally did it. I got here. I am finally in a place where her size seems as wonderful and special to me as her hair or her eyes or the way she wraps herself around my arm to give my mole a hug. I don't even know how it happened. I can't go back and retrace my steps (a considerable handicap in writing the essay, believe me).

But I did it. What a relief.

Posted by Andrea at 2:05 PM | Comments (9)


February 24, 2006

To Kristen

--

Hi.

This morning when I checked my referral logs I noticed that someone posted this link for you on a bbs after some ultrasounds you've had recently where your baby's arms and legs were measuring behind. Boy, does that ever sound familiar. Except (and I hope you will find this encouraging) your baby's arms and legs are not measuring as far behind as Frances's were.

You can read our whole story as posted in March of last year or from the links on the right--look at the "merrygoround" link under the categories. But I thought that was probably a lot of work for a busy pregnant woman to undertake, and every day my referral logs show a lot of people googling "achondroplasia diagnosis ultrasound" or "femur bone length of unborn baby" or "do soft markers disappear" or "soft markers not good diagnosis" or "ultrasound dwarfism" or "mild achondroplasia" or "ultrasound showed echogenic focus in heart while all other down syndrome tests c" or "can doctors stop achondroplasia before even happening" and I know that most of those people are women like you are, or like I was, scared to death and looking for something to reassure them. So here I go, writing a note to you and hopefully to all the other women too; I hope you don't mind.

I won't repeat all the information I learned about ultrasound, how unreliable it is, or about the tremendous false positive rate in routine pregnancy screening tests. I've already written about it, and if that's what you need to know, you can follow those links. (Although I will mention here that 2 weeks behind on femur length doesn't mean dwarfism, that achondroplasia can only be suspected when the femur length is at 2.4 %ile, which normally translates into four or five weeks behind.) And I won't tell you what a joy my little girl is, because you can pick almost any entry on the site and see. What I will tell you is what I wish I knew then.

I wish I knew that even when doctors sound like they know everything, they don't know everything, and frequently they don't know the things you care about most. I wish I knew that sometimes you can't get a diagnosis, and that a diagnosis might not change anything anyway. I wish I knew that even when doctors sound their most confident--"I'm almost certain it's Pfeiffer syndrome"--they can be dead wrong. I wish I knew back then that I might actually know more than the doctors do.

I wish I knew that doctors, some doctors anyway, are so obsessed with "normal" that they literally cannot see anything but a person's differences. I wish I knew that just because a doctor saw her eyes as "too big" and her body as "too small" and her fontanelle as "closing too slowly" and her ears as "too low-set" that it didn't mean anyone else on planet earth would ever see those things, because except for her size, they never do.

I wish I knew how little her being small would affect our early days together. That I would worry about milk supply and night-time wakings and sniffles like any other first-time mother, that I would wonder if I was changing her diaper right or holding her head properly, that I would celebrate her early successes just as greatly. Of course, it did affect me; I weighed and measured her every day for weeks on end to try to "prove" that she was growing normally. It only made me sick with worry. I don't recommend it, if you can help it.

I wish I knew some of the wonderful things that come with a small baby. I wish I'd known that being able to effortlessly carry her for hours on end and still able to toss her over my head for a game is a special thing that I can be happy for, even if I am not happy about whatever is making her small.

But mostly, I wish I'd known how insignificant her size or her condition is. I wish I'd known that whatever it is that makes her so small, is such a minor characteristic that I go days without even thinking of it. Seeing her with her peers is the only thing that brings it to mind, and that probably only because I so rarely see her with her peers. Her smallness does not change my experience of mothering her. It changed her medical care greatly in the first 18 months, what with the constant hunting for a diagnosis, which changed my experience of being a mother--but it does not in any way affect our relationship, or the person she is.

The ultrasound results scared me so badly and when I found out that there was indeed something keeping her small (though I never found out what that something was, and I'm not likely to) that I thought I'd lost my happy ending. What I wish I'd known is: I wish I'd known that she didn't need to be "normal," and I didn't need to prove that she was "normal," for Frances to be my happy ending. She is the best person I've ever met.

You say in your post that your baby's limbs are a bit small, and their head a bit large, and that nothing which might cause health problems has been detected. Nothing I can say will change how you feel about this now, because this is an adjustment to your expectations. Of course it is. We all know that 1-2% of babies are born "different," and not a one of us expects it to be our baby. Even the thought that it might be is frightening. If the doctors are right, or even partially right and your child has something similar to what Frances has, there are things your friends may enjoy or experience with their children that you may not. They may complain about how heavy their children are, or how quickly they grow out of their clothing, or that they are worried because their baby is "only" at the 10th line on the centile chart, and you may feel like you have missed out on those experiences. You may worry about how other people will treat her. You may be frustrated someday at the limitations of children's products and how they are all designed for babies and children of a normal size. You may someday find yourself wondering if it is better to force your toddler into a rear-facing carseat when they hate it and cry, or allow them to ride front-facing even though it is not safe, because car-seat manufacturers all assume that one-year-old babies are 29" and 22 lbs. You may have to deal with the well-intentioned and hurtful advice of loved ones and strangers who assume that your child's small size is due to something you did, or didn't do. And it would be wrong of me or anyone else to tell you how to feel about those things. I found it frustrating and painful, many times.

But I can tell you that if you have a child who is quite small, and whose head is a bit big, and who has no unusual health problems whatsoever, that you have a child like Frances. Not precisely like Frances: I don't intend a diagnosis. But enough like Frances that our experiences will probably be similar.

If you have a child like Frances, when you look at them you will not see 'this,' whatever 'this' turns out to be. You will see their soft hair, their bright eyes, their cunning fingers, their plump round cheeks. You will not hear 'this,' whatever 'this' turns out to be. You will hear their voice, which will be the most beautiful voice you've ever heard. Your child will not do or be 'this,' whatever 'this' turns out to be. To you and to your child they will only be themselves.

I read once that receiving a diagnosis for a fetus is like being told a person's eyeglass prescription. It tells you nothing important about them. The diagnosis or eyeglass prescription may be true, but it doesn't matter; it doesn't tell you if your child will like chinese food or fall in love with Dora or hate putting on their winter coat or sleep through the night or find the cure for cancer or start a garage-rock band. It doesn't tell you any of the million things that will make you fall in love with your child, that will make other people fall in love with your child. It may be an important part of their life, but it is not an important part of them.

I want you to know that everything is going to be ok.

I want you to know that the other day, I saw Frances sitting on Erik's lap while he read her a story. She sat there contendedly, turning the pages, "helping" him read. Her head nestled against his chest and her feet reached about halfway down his thigh; I thought, "Wow, she looks tiny today." Her whole self wrapped up in a marvelous compactness, completely beautiful, wholly good. It made me smile.

Posted by Andrea at 10:59 AM | Comments (8)


February 23, 2006

The early bird gets the worm

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A year from now, I will be signing Frances up for junior kindergarten.

...

...

Sorry, thought I was going to faint. Whew.

Yes. She will be just over three. Yes, I am planning to enroll her for junior kindergarten at 3 1/2; I can do that here. She fits within the birthday deadline by eight days. And yes, I think she'll be ready, in every way she can be.

I wasn't planning to, initially; she might have been born eight days within the deadline, but she wasn't supposed to be; she was a month early. I was planning on acting as if she'd actually been born on her due date, and giving her the extra year.

Now the plan is to send her to school. I think.

First, kindergarten is free (or, rather, we've already paid for it), and daycare is not. I'd be lying if I said the finances weren't part of it.

But second, and most importantly, I think she's ready.

Intellectually and socially, she already is, I think. She already spends time in the preschool room at the daycare, and does very well; she already knows her colours, her letters, her shapes, and many numbers. She can count for real and she can recite numbers up to ten. She is friendly and listens well most of the time, she enjoys meeting new people, she is good at sitting still for circle time at daycare. I'm sure she'll make more progress before September 2007, but even if she didn't she would be ready for junior kindergarten.

I worry about her size.

I do. In a room full of kids one year older than she is, her small stature will stand out even more. By September 2007 she is likely to be the size of a two-year-old. Two-year-olds do not typically attend junior kindergarten, so I know she will stand out. I worry that it will be hard for her to fit in and make friends. I worry that she will be extra vulnerable to the vigorous push and pull of small-child play. I worry that the seats and tables and chairs and toilets will all be too big.

But the extra year is not likely to give her enough extra inches to mitigate any of that, so it won't encourage me to keep her in daycare. Besides, I was afraid of that before she went to daycare, too, and it turned out to be for nothing. She will always be the smallest in her class regardless of when she starts school, and I want her brain to get the exercise it needs. I want her to be challenged.

So in a year, I'll be signing her up for junior kindergarten.

...

WOAH. Can it be real?

Posted by Andrea at 8:18 AM | Comments (16)


February 11, 2006

Wow.

--

TheStar.com - 37 pound-woman gives birth

For those of you who can't access the site:

"Mother suffers from rare bone disorder
"Baby is healthy, doctors say

"PALO ALTO, Calif. — A woman who is three feet tall and weighed 37 pounds before she got pregnant has given birth to her first child — a healthy boy.

"Eloysa Vasquez, who uses a wheelchair and has had two miscarriages, suffers from Type 3 osteogenesis imperfecta, a disorder that makes bones soft and brittle.

"Vasquez gained 20 pounds during pregnancy and delivered the three pound, seven ounce baby on Jan. 24 at Stanford University's Lucile Packard Children's Hospital.

"'We just took one day at a time. We had a lot of people praying for us. We just believed ... and here we have our son,' Vasquez, 38, told The Fresno Bee.

"Doctors said they delivered the baby, Timothy, by cesarean section eight weeks before due date in order to protect the mother's fragile health; her tiny, distorted body left little room for a fetus to grow.

"They said Timothy did not inherit his mother's genetic condition.

"Judging from her son's long fingers and toes, Vasquez said, 'I think he's going to be a tall boy.'

"Her husband, Roy, said his wife's small stature can be deceiving: 'She's a strong lady.'

"According to the university, one in only 25,000 to 50,000 births are to a mother with osteogenesis imperfecta, and even fewer involve moms with the severe Type 3 form."

Wow. Good for her. I mean, proportionally speaking, that's like if I gained 120 lbs when I was pregnant and gave birth to a 15 lb baby.

Posted by Andrea at 2:09 PM | Comments (0)


January 5, 2006

"Just"

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A: So how's your baby?

B: Good! He's learning his first words and he's just this close to walking. And his eyes are still blue. For a while there we thought they might turn hazel, since our eyes are both hazel, but nope! Still blue!

A: Oh ... but his eyes are just blue, right?

~~~~~

D: So how's your daughter?

E: Great! She just had her checkup and she's HUGE. 95th percentile for height and weight!

D: But, she's just big, right?

~~~~~

G: How did your appointment go?

H: Oh ... better than I thought. The biopsy results came back and it is a tumour, but it's benign. So they're going to watch it for now and we'll see what happens over the next year.

G: So that's ok then. It's just a benign tumour.

~~~~~

S: So how is Frances?

A: Great!

S: Did she enjoy Christmas?

A: Oh yes. First child and first grandchild. LOTS of presents.

S: Ooooooh. That must have been fun.

A: It was.

S: She must be getting big, too.

A: Uh ... well, not really.

S: No? But they grow so fast at that age!

A: Hmm. Well. Not Frances.

S: Oh. But it goes up and down. I found that with my kids. They'd grow slow and then they'd grow fast. I'm sure she'll catch up.

A: *laughs* We have lots of little people in our family, so I think she'll probably stay small.

S: Well, that's ok though. I mean, she's just small, right?

~~~~~

My daughter is not just anything. She is not just sweet, or just smart, or just happy, or just loving, or even just small. She is sweet, smart, happy, loving and small. Being small does not detract from her perfection, but when you say "just small," you make it clear that in your eyes it does. You would not attach "just" to a characteristic you deemed desirable or neutral. "Just" is used to minimize--and no one minimizes good things--or to rebuke. But why rebuke me for saying something that is obvious to everyone who sees her? She's tiny. She's the size of a very small one-year-old. It's a fact. It's not good, it's not bad, it's just a fact. Frances herself already knows, so if your concern is for her self-esteem, you can spare yourself: It isn't my recitation of her height and weight stats that makes the other kids (all of whom are much larger than she is) snatch toys out of her grasp without a thought, and it isn't my recounting of our tales in the medical trenches that causes her to stand there without protest wearing a downcast face. She is already learning that she is small, and what that means.

So yes, it is already causing her problems; and as she grows it will cause more. This is not an inherent characteristic of her size, but a reflection of the world she lives in and the value it places on big. Elevator buttons don't grow themselves at a certain height; toilet seat height is not inevitable; the distance from the countertop to the floor is not a law of physics; where in a room the light-switch is placed was not decided based on the inherent characteristics of electricity. No. These were all choices made by humans, and those choices reflect their beliefs--about normal and about size, and about whether built environments should accomodate themselves to people or vice versa.

If "just small" is meant as, "that's not a REAL problem," then you can bite my lilly-white ass. Depression, psychological problems and poverty are not more widespread in the dwarf than in the normal-size community by coincidence. The prejudices of other people including the way those prejudices play out systemically are REAL problems.

And here's a point to ponder: When I say that she's small, when I say how small she is, when I observe that she is likely to remain small for reasons unknown to us, this is simply a fact, with no more or less value content than if I had observed that the colour of her hair is blonde (but likely to be brown as an adult), or that her prescription is -6.5, or that her laugh is throaty and her eyes are as blue as a summer sky. It is a verbal recitation of a fact. Period. That you then feel the need to tell me that it's not a problem--that she is "just small"--only tells me that you actually think it is. Otherwise, you would also be telling me that she is also "just smart," "just pretty," "just happy," "just well-behaved," and so forth. No rejoinder seems needed when I say that she knows her colours and shapes and letters--if I share her good caretaking of Baby Eloise or the way her Thomas the Tank Engine trains like to kiss each other no one points out that she is "just sweet."

On the other hand, if "just small" is meant as "I have no idea what to say because I'm sure being small is terrible, but it's not cancer and she seems fine otherwise," or "at least that's the only problem she has," then you can go fuck yourself with a rusty cheesegrater. It's only a problem for her because other people think it should be a problem, and by saying she is "just small" you've included yourself in that group. It's only going to be a problem for her because our whole society has been built around normal, and because of our ridiculous belief that "bigger is better." Schumacher published Small is Beautiful in 1974, but we still don't act that way, and this is as applicable to individual people as it is to the world of economics that he wrote about. Bigger is not better, it's just bigger.

It's true that I still struggle with this myself from time to time--it's not easy to overcome 30 years of social conditioning in twenty-four months--but I am making progress and pointed reminders that Frances is "just small" from someone who has far less experience with the dwarf world than I do are not going to help.

So if I'm talking about my daughter, and I mention her size, and it doesn't seem that it is a problem to me--if I am smiling, if I seem amused at her ability to eat a tremendous amount of food without growing, if I laugh when I say how far below the charts she is, if I seem unbothered when I mention that she is not going to "catch up" but will instead remain small, here is a hint: Respond as you would if you really believed that being small is OK. Respond as you would if I had mentioned to you some amusing value-neutral characteristic--that she has all her teeth, that her feet are a size four, that she really likes cheesies. Don't act as if any mention of small size must by its very nature be a complaint, as if the only proper way to handle a young child's very short stature is under any circumstances, not to bring it up, to pretend it doesn't exist. Don't tell me she is "just small." As Yankee Transplant said many months ago, Frances isn't just small--she is all small. And small is beautiful.

~~~~~

What do you think? Too much to unload on some poor unsuspecting soul at the office water cooler?

Posted by Andrea at 9:49 AM | Comments (14)


October 21, 2005

Normal Schmormal

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As I mentioned before, part of our recent shopping spree was a toddler-chair for Frances. They don't have it on their website, which is really a shame; it's a very small hard chair covered with tan fun fur and a plush lion face on the backrest. We also bought a to-be-finished wooden table set from Michaels that we are going to saw the legs down on so it will "match" this little lion chair, and she will have a table and chair set small enough for her to be comfortable. But the table still has to be finished and assembled (we're targeting her birthday/Christmas), so in the meantime, I've brought this upstairs. The top can be flipped over to make a table, so now if she wants to use her crayons or markers, she has a nice, comfortable table and chair to use while she does so.

Of course, as any mother reading this will now, the mere act of moving a toy from one room to another imbues it with new life; so her megablocks table, which had been languishing in a corner of the basement for months, is filled with excitement and potential once more. On the one hand, this means she has no interest in using it as a table. On the other, she is really enjoying her megablocks. She runs to her lion chair and sits down, and talks to herself as she plays:

"Yellow block goes here. Brown block goes here. Little girl goes here. Tiger! Tiger says grrr. Tiger goes here. Giraffe goes here. Doggie! Doggie! Woof woof! Yellow doggie goes here. Triangle goes here. Square goes here."

And so on.

I sit there and remember how excited I was, way back when, when she first started to put her megablocks together and pull them apart again.

I also remember we bought this table set because it was the perfect height for her to cruise around, at the time; it came up to her waist and so she could walk around it with her hands on the table and be quite comfortable, and have a toy there that would encourage her to stay upright and keep moving. And now she's tall enough that she needs to sit at it to play comfortably--if I were to eyeball, based on her height compared to that toy, she's grown about three inches since last December. Which isn't quite as much as a "normal" child on the third centile line would have grown, at 3 1/2 inches, but is pretty damned close, and way better than I had feared last winter based on her growth pattern at that time. (Her pattern in the second half of her first year was to put on about half as many inches as other children her age, so I was expecting her to grow maybe 2 or 2 1/2 inches this year altogether.)

I've had such different reactions to her unique growth pattern since she was born.

At first, I was determined to prove that it was normal. I scoured the internet for articles on babies with different growth patterns, posted extensively on different bulletin boards looking for others with similar stories. I didn't find them, but I made do with what I did find--it was because she was breastfed, for instance. It was because she was a preemie. It was because of reflux. I was determined to prove that she was "normal," and I was trying to "look on the bright side"--at the time I could only believe that the happy ending would be that she would catch up to the charts.

The reflux went away, and her growth slowed down. I introduced her to solid foods, and her growth slowed down. I weaned her, and her growth slowed down. She hung on to that chart tenaciously for a good four or five months; but then when she fell off, she just kept falling.

I don't think it's possible to overstate how much this scared me.

At first, I wondered whether it was because I wasn't nursing her properly, or maybe it was the cosleeping, or something else I was doing. As she moved to her own foods and her own bed and grew even less, I knew it wasn't my fault, but then I worried that she was sick, or that something was "wrong." I'd weigh her on our electric scale, sometimes every day, and every time I'd take at least three measurements and then average them. I'd measure her length constantly too, being as careful as I could be to make sure her head stayed put when I stretched out her legs so that it would be as accurate as possible. I just wanted to see some proof that she was still growing, and maybe some reassurance that she wasn't really growing as slowly as I feared.

But she was. And it's one of the hardest things I've ever done--seriously--to make myself accept this. To truly convince myself that it was ok, however she grew--that there was nothing I could do to make her grow any faster, and that whatever size she was was the right size for her, and I shouldn't even try to control it--that regardless of where her height stands in relation to whatever chart a doctor is using at any particular time, there is nothing "wrong" with her. Which is not easy when the combined medical opinion of approximately a dozen professionals is that there most definitely is something "wrong," and possibly seriously "wrong," and I should consider whether or not I wanted to risk reproduction in the future.

It makes me distrust my reaction to her recent growth spurt. I want to celebrate it, but I don't trust my motives. Growing three inches this year is a lot, for her; but I don't want to fall into the trap again of feeling that more inches are better, that there is something more valuable about being bigger--not only for me (since I don't want to get back into the mindset of needing or wanting to believe that she's "normal," since for all I know after this spurt she may never grow again) but for her. I want her to always know that I am happy with everything about her exactly the way it is. It would be hard for her to believe that if I give a little yip of joy for every unexpected inch she grows.

But at the same time, growth and celebrating growth are such a big part of childhood--I don't want her to miss out.

So somehow, I want to learn how to celebrate her growth, including her growth spurts, without unintentionally sending the message that more growth is better. I want to be able to celebrate as much when she grows half an inch as when she grows two inches; and I know I have a long way to go. There is a corner of my mind that is still hoping she will catch up someday, and I usually keep it tamped down pretty well, but at this latest spurt it's blasted out in full glory. And it scares me, a little. I don't want to end up where I was last summer, paranoid and paralyzed and terrified when she didn't grow as much as she "should."

I don't know how to do this. I don't know how to celebrate her growth without sending the message that it would have been even better if she'd grown more.

One thing I did do was get her a little wall growth chart. You know. Those plastic things you hang on the wall two feet from the floor, with the inches and feet marked off, and every so often the kid stands up to them and you mark where their head is? Those. She'll get that for Christmas, and we'll hang it in her room proudly and use it often. And if sometimes you can barely see the increase, and other times there's a nice big gap from the last one, we'll clap and exclaim over it. Because growing up is special and should be celebrated, even if you're not doing so much of the "growing" part.

Posted by Andrea at 9:29 AM | Comments (10)


October 3, 2005

Eugenics and Family Planning Part II

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Feminists often argue that a state policy keeping women in their traditional place is not needed where other forms of coercion are available--that, for example, a man doesn't need to hold a gun to your head or a knife to your neck for an act to count as rape, and that the state doesn't need to pass a law banning women from the workplace after having children if they simply structure the tax system in favour of single-income families and make childcare all but impossible to find. So the first aha! moment I had while watching the documentary yesterday was that the state doesn't need to pass a law preventing certain kinds of people from having children if they can simply make it difficult and unpleasant enough to do so.

What I wonder is: How does the medical system determine which parents need genetic counseling, and which ones don't? The couples who aren't recommended for counseling don't have perfect genes; no one does. Instead, there is a list of conditions they ask you about--does your family have a history of x, y, z?--and if you answer yes, off you go to the genetics counselors. And what is their job? To tell you about the risk of recurrence, to offer you tests to determine whether or not the fetus carries the syndrome, and to counsel you on your choices to terminate the pregnancy or seek out post-natal support if the answer is yes. (Note: It is not their job to tell you that everything might be fine, that it could even be amazing.)

Let me backtrack a bit and talk about some of the research I did during the Scary Ultrasound Phase of the pregnancy. All of the conditions I was told Frances might have (achondroplasia, hypochondroplasia, T21 and Turner Syndrome) are testable; that is, we know the genes or chromosomes affected and can determine prenatally whether or not a fetus is affected with a high degree of accuracy. However, they don't offer the test to everyone--that would be too expensive--instead, they attempt to narrow down the field by the use of the "soft markers." I won't go into it in too much detail since my old posts contain a lot of this information (if you're curious, go ahead and read the back entries), but the soft markers exist to determine which pregnancies have a high enough risk of carrying an affected fetus to determine the amniocentesis test's risk of miscarriage.

(Note: "risk." That's a loaded word, isn't it? Do we talk about the "risk" of carrying a fetus "affected" by above-average intelligence, tall stature, an ability to excel in mathematics or music? No. The words the medical community uses to discuss these situations makes perfectly clear what they think of these pregnancies without ever once having to use the word "undesirable.")

The journal articles about T21 were particularly revealing: many of the researchers measured their success by the number of T21 pregnancies successfully aborted. Not by the number of T21 pregnancies identified correctly, or the numbers of pregnant women offered counseling in how to prepare for a T21 baby, or the numbers of pregnant women carrying "normal" fetuses who were not exposed to the strain and stress of the kindly offices of genetic counselors. No. At the end of the day, they justified their work by the number of T21 babies who were not born. (Note: the links are only a small sample of journal articles on the subject.)

And tell me that's not eugenics.

But it's not a law, is it? No. It's all presented as optional. Of course, if you're a modern, caring parent you will want to know about the risk of your children being affected by T21, or by achondroplasia, right? And if they are affected, you will want to know how that will affect their quality of life, right? And you will want to know about your options in continuing or terminating the pregnancy, right? And then somehow, we forget to question--

We forget to question why it is that these syndromes are screened for, and those are not. We forget to question why it is that parents with T21 children, or dwarf children, or a family history of sickle-cell anemia, are offered genetic counseling (which includes all the wonderful modern tricks and gizmos that maximize your chances of not having an affected child--and again, tell me that's not eugenics) while parents with children who have learning disabilities, or who are violent, or who have a family history of heart disease or cancer, are not. In part that is because we don't know as much about the genetic basis of these (though that in itself says something), but truly, that's a cop-out: No one can tell me anything about the genetic basis of Frances's dwarfism, and yet that won't keep me from the clutches of the genetic counselors if Erik and I decide to roll the dice again.

Is there any plausible explanation besides eugenics? I can't see it. By the way, this is not a rhetorical question. If you have one, please offer it.

I have been thinking of this for the longest time as a question of sparing a child social ostracism or prejudice; and the scary thing is, that seemed rational. But how is it not eugenics? How is it not a statement of which people are desirable and deserving of life and society's benefits, and which are not?

To illustrate: If someone advocated that people of colour not reproduce because their children would be exposed to racism, we would be horrified. What's the difference?

When Frances was a baby, I knew one or two other women with babies who were her opposite--who were massive, way off the top of the charts in terms of height and weight. No one offered them genetic counseling to determine the cause of their "gigantism" or the "risk" of a future child being similarly "affected." How is this anything but a statement of our cultural values around size?

It isn't even the process of genetic counseling itself; it isn't what happens once you get there, or what they say (though sometimes it is--pointing out the baby's or child's "unusual features"--as if anyone is composed one hundred per cent of "usual features!"). It's who has to go through it, and who doesn't. It's who is expected to decide whether or not their children would be better off dead, especially when the "defect" being investigated is an issue only because of the prejudice of other people.

What exactly is the health or social cost of having a child like Frances? Zero. She's perfect! She's bright, sweet, fun, happy, loving, healthy, sociable, adorable--any parent would be lucky to have a child like her. How does being short hurt her or anyone else, except that our society values bigness? If we were truly committed to being an accessible society with equal opportunities for everyone and no barriers for physical differences, it would be a non-issue. The only reason I even need to think about this is because someone else decided that little people, dwarves, are not desirable, and I shouldn't want one.

No one had to pass a law allowing the state to tie my tubes and rip Frances's womb from her wee body to prevent these "bad genes" from being passed on to the next generation, the way they did to my great-aunt. No. All they had to do was put me through a wringer of genetic counseling appointments to discuss Frances's "unusual features," a series of unpleasant genetic tests, and a few off-hand statistics about the chances for recurrence in future pregnancies--that was enough to make me seriously question my right to have another child of my own body, to pass my funky genes down to another generation. As if Frances is flawed! As if she has less of a right to existence than some psychopathic gun-toting egotistical maniac who is genetically "perfect."

Do we have a eugenics act, forcibly sterilizing those who society feels should not have the right to reproduce? No. Instead we single out those family lines with traits we find undesirable and kindly ask the members of it to voluntarily refrain from reproducing, or at least take care to minimize their chances of carrying an affected fetus to term, to spare society the tremendous burden of our less-than-perfect genetic codes.

Does this make sense to anyone but me, or am I completely insane?

Posted by Andrea at 8:05 AM | Comments (19)


October 2, 2005

And you know I never post about television....

--

Erik was channel-hopping this morning and came across a documentary called In Our Own Image, about genetic testing and how it's used in genetic counselling etc., and there was a substantial section about Little People and the choices that people of short stature make around child-bearing.

It was fascinating, and it's on again today at 5 pm if anyone is interested. I have no idea where my head is after watching it and I might catch it again this afternoon so I can watch it from the beginning.

Here is a piece about one of the subjects of the film, a man with achondroplasia named Kenny.

Edited to say: I watched it again (note: you should write this in your calendar. I never watch reruns on purpose) and it was really interesting. I'm just going to get a few things down before I forget:

--One of the experts had a few good lines. For example, at one point she said that we tend to look at each family's decision individually--this woman didn't have her baby because of x, that woman didn't have her baby because of y--but then if you look at it societally, we're eliminating entire classes of human beings and, in her terms, "that's eugenics."
--They interviewed the mother of the achondroplastic woman who had her baby on the show, and she said that when her daughter was born the doctor advised her that she might want to get her daughter into the circus, that being an acceptable life path for a dwarf. They also mentioned the Alberta and BC eugenics acts which, as regular readers will already know, were why my great-aunt was sterilised as a child for being "too short."
--Another one of the experts said that she wouldn't want to take decision-making away from the parents, and if there were to be a social movement taking decision-making away from them--saying which babies they could and could not have--to her, *that* would be the problem area.
--But then, I wonder: Does it need to be encoded as a law or to be backed up with the force of the state to be a quasi-eugenics movement? Isn't providing pregnant women with this information, on its own, sometimes an indication of what the medical establishment expects you to do with it? I remember reading a lot of papers about predicting T21 prenatally when that was one of the things they thought might explain Frances's small size, and it was so clear from reading so many of those papers that they expected and wanted the parents to terminate the pregnancies--that was how they measured success: by the number of T21 babies born (or not born).
--I wish I could remember her name! This is why I'm already writing it out, you see: The achondroplastic woman who had her baby on the show talked a bit about the pressure to have or not have a baby with her own syndrome, and as she said--look at all the dwarves and little people and disabled people throughout history who have made such a huge and positive difference in the world, and been so happy--and then physically and genetically perfect people who are miserable or who commit suicide.
--Which leads to another question: What are genes worth? We have this nature/nurture argument all the time over personality and psychological traits, but I have never seen real serious questioning over the worth of genes in physical traits. What are genes worth? How much weight should we give them? What matters more, my "good" genes (eg. intelligence) or "bad" ones (eg. diabetes)?
--They attended a Little People of America convention and polled some of the attendants about whether they intended to have children and, if they did, would they have children with the same conditions they did? The field seemed to be about evenly split between little people who would like to have dwarves themselves, or who wouldn't mind it, vs. those who would use genetic testing to avoid it. Not a scientific poll, but obviously a question not resolved entirely satisfactorily even within the LP community.

So. Me, I am a freak. I'm not content to make my decisions based on myself, my family, my circumstances. Oh no! I need to have the entire universe ordered and explained before I can pour milk on my cereal. And so I open it up to you, hippos:

1. When is it eugenics?
2. What are genes worth? How much should genes count? When?
3. Other. Have genes affected your decisions in any ways? Are you a carrier of something, or do you have a genetic condition of some kind? If so, would it change the way you approach family planning?

Posted by Andrea at 10:55 AM | Comments (4)


September 28, 2005

Costumes and Panic

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You will all be pleased to know--or at least, you will pretend to be pleased, because you like me--that I did find that pattern Monday evening and a nice big pile of the softest, fluffiest, cutest, swirliest white fake fur I've ever seen. Plus, they were having a sale of 20% off everything, which means that I spent a little less than I would have on that dalmation atrocity, and presumably for something nicer when it's done. I spent yesterday evening after Frances went to bed cutting out the pieces, covering my jeans and the carpet with itty bitty bits of fluffy white polyester "fur" so that it is now difficult to see the initial colour of the carpet. All that's left for cutting is the lining--they suggest broadcloth, but I have whacks of scrap white fleece around I think I will use instead for extra warmth. Hallowe'en can be nippy around here.

Sizing was, as always, a challenge. I chased her around with a tape measure while she was awake trying to figure out the length from the back of her neck to the floor, and the circumference of her head and chest, and her inseam length, and other fun things difficult to achieve when your baby girl thinks that the tape measure is just the best new toy she's ever seen. Here, gimme that Mummy! Let me wrap it around my leg. Ooooooh, fun.

It was no surprise to me to see that her head circumference and chest circumference were more or less identical at around 18", that big-brained babe of mine; and the length from the back of her neck to the floor seems to be somewhere around 23", though it's hard to be sure considering she wouldn't stand still when I tried to measure her, so I was scampering after her across the hardwood on my knees trying to eyeball it. This puts her--wait for it!--squarely within the 6 month size of this sewing costume.

I swear to God, every time I see some proof that she's growing, I see something to make me think that maybe she's not after all. Now sewing sizes are often very different from sizes in stores, and I knew it was going to be bigger just looking at the measurements on the pattern package; but it's still hard to put your baby girl's measurements at 21 months up against the six-month-size pattern pieces at the floor and see them looking, well, dwarfed. I have one of the nine-month size sleepers from Children's Place that she's recently outgrown to use as a comparison; I want her costume to be bigger than that, but just slightly, or she'll be tripping over her own floppy feet when she goes trick-or-treating. I'm cutting the head bigger at a "medium" because her head is quite large for her size (though smallish for her age), and if there's one advantage to sewing one's own clothes, it's that things fit properly.

I know I haven't been talking about this much lately. If you'd been breathing a big sigh of relief over the End of the Whinging, this might be an entry you want to skip over.

Every time I think I'm getting over it, that I think I'm finally ok knowing that I will never know why she's so small or what her future will be like, I'm not. Something brings me back here. I see a list of things that parents of kids with achondroplasia (dwarfism) should never do, like toss them in the air, because the size of their heads and the weakness of their spines makes this risky--it can paralyze them; and I wonder, is there some list like that I should be aware of for Frances, only no one can or ever will tell me because no one knows what she has? Tossing her in the air hasn't paralyzed her yet; but will she be ok to ride on roller coasters at the amusement park? Assuming she's ever tall enough. Or I place her on the growth chart for achondroplastic girls, and I see that she's just under the 50th percentile for her age--and I wonder what I'll do if she starts falling off this growth chart, too (although it is nice at last to see that she is on a growth chart, and not just clinging to the edges of it).

I get hit with sudden fears like "What if she never even reaches three feet?" Or, "What if her intestines are growing at a regular rate and they run out of room in her ribcage?" And I don't know if they're irrational or not, because I have no idea what she has. There's no one I can ask, because no one else knows either.

I see other moms buying clothes for their kids a year in advance when they're on sale, knowing with reasonable certainty that they will fit--and I can't even buy clothes for Frances now knowing that they will fit--the 9-month sized pants and shirts I got for Frances last year are still too big on her, though less too-big than they were. Will she finally outgrow them this year? Who the hell knows? As far as I know, she may never grow again.

Can we modify our house with stepstools and other minor things, or do we need to get her special furniture? Will she be able to ride a bike? What kinds of modifications will I need to ask her school to make? Will she need a friend to walk down the hall with her so she can open the doors? Will she be able to use the toilets? Will she be able to reach the blackboard if she's called in front of the class to answer a question? Will she be able to get on the school bus? There are all those studies showing that each extra inch in height equals a certain amount of annual additional income--will she be poor? Where will she shop for clothes when she's a teenager and she wants to wear what her friends are wearing, but they don't carry anything in her size? Will she ever be able to buy a bra off the rack?

What kinds of things do I need to be doing as her mother? What skills should I be teaching her? What kinds of home modifications should I be making? What books should I be reading? What people should I be talking to? What specialists will be able to help with any mobility or adjustment problems she might have? I'll never know, unless someone can tell me what she has.

And that's not even mentioning the whole "is this hereditary, or is it spontaneous" question. Unless someone can tell me what it is, no one can tell me where it came from or how likely it is to recur. If it is 3-M, then there's a 25% chance of recurrence in a future pregnancy. Boys and men with 3-M are sterile. That means I would have an approximately 13% chance of giving birth to a child who could never have children themselves--and not having fertility problems myself, only hearing from others how hard it can be, I don't know how much that should influence my decision-making. And again, not knowing what it is, or what the ultimate prognosis is, I don't know if it would be right for me to risk bringing another child in to this world who might have a hard life. Or, for that matter, if I could stand to go through the type-1-diabetic/premature birth/hospital stay/reflux/slow growth/genetics gauntlet again. Forget "relaxing and enjoying the pregnancy." You'd have to put me on tranquilizers for the entire nine (eight) months. And now that I'm mostly out of the thick of it, it's more glaring than ever to me how much of Frances's first year I spent in a state of repressed panic--searching medical databases for hours at a time sometimes every day looking for some clue, any clue, as to why she was so small and growing so slowly.

I can't help but feel that if I only knew, this would be so much easier to deal with.

Posted by Andrea at 9:52 AM | Comments (10)


September 20, 2005

Exactly how much do I hate driving?

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As if I needed any more evidence that Christmas season is starting, yesterday we received in the mail our registration with the Little People of Ontario along with an invitation to their annual Christmas dinner and dance, complete with a visit with Santa for the kids.

The only problem is that it's about two hours away; they have a block of rooms reserved at the hotel, but only until October 5, so I have to make up my mind quickly. (Yes, for me, this is a snap decision.)

Pros: Chance to meet other local LPs, possibly some Frances's age, and maybe some other local parents of LPs.

Cons: $24 for each adult ticket. $100 for overnight stay. Two hour drive each way.

Look for me to make up my mind sometime late in the evening of October 4th.

Posted by Andrea at 7:21 AM | Comments (5)


July 1, 2005

Helpful Hints to the Parents of the Averagely Sized

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There you are, shopping in your local grocery store. Your toddler, a respectable thirty pounds, is doing his best to escape from the cart. Your preschooler is reaching items on the third or fourth shelf with ease and constantly pestering you for sugar cereals and cookie boxes with cartoon characters on the front.

Just down the aisle, you see a young woman with a baby in her cart, or a woman with a small toddler walking beside her. You smile and remember the days when your kids were so small. "Hi," you say. "Awwww--aren't you cute?" This last to the baby.

The other woman smiles.

"S/he's adorable. How old is s/he?"

The mother of the baby answers "18 months." The mother of the toddler answers "six years old."

You gasp, whether audibly or not. Not infant, then; not toddler. You were way off. What do you say now?

1. Wow! Was s/he a preemie?

2. Oh my goodness! S/he's TINY.

3. What's wrong with him/her?

4. Oh! (accompanied by shocked look)

5. [wise nod] Oh yes, I know all about that. My eldest was only the 25th percentile, you know.

6. I had a niece who looked like that when she was born. But now she is the prettiest little girl I know. Don't worry; she'll be perfect in a year or two.

7. Have you taken her to the doctor?

8. Maybe you should switch to formula.

9. You should definitely NOT switch to formula. That will only slow the growth down more.

10. He needs more sleep. Babies only grow when they're sleeping, you know.

11. I bet a bit of peanut butter and whole milk would fatten him right up.

12. [scurrying away with evil looks cast back over your shoulder--clearly she is starving the baby to death. You should call the CAS as soon as you get home!]

Oh wise internet; what is the correct answer?

13. None of the above.

If you ever find yourself in this situation, Dear Reader, please consider smiling; say "S/he's beautiful. What a sweetheart! It was nice to meet you." Then go on with your day.

That mother knows exactly how small her baby is. I am willing to bet you she can tell you the weight of her child at every doctor's appointment since birth. She has probably weighed him on the scales at home at some points every day, just hoping to see the number go up. She has probably tried carefully measuring him with an old tape measure, a pencil and an old baby blanket on a regular basis. If she is anything like me, she celebrates every time her child outgrows another clothing size. The day when the carseat is turned around is a momentous ocassion, one that is celebrated with a dinner out and a big page in the scrapbook.

There is a special terror when your baby falls off the charts and keeps falling--a fear borne of no longer having a guide to reassure you that their health is good and things are happening as they should. Even if those charts are poor guides, even if your baby hasn't been following a curve, you don't know how much it means to have one there until it's gone. She doesn't need you to frighten her any more. It has nothing in common with your baby or someone else's baby being low on the charts, as worrisome as I'm sure that is.

If her baby or child is very small, she has probably seen more different kinds of doctors than you are even aware existed. She has tried every kind of fattening food there is--butter, cream, cheese, avocado, whole milk. My little girl is 18 months old and I have yet to give her plain water to drink. It has no calories.

She is already aware of how different her child is--in large part because helpful strangers keeping pointing it out with such pearls of wisdom as, "Oh my! S/he IS small!" And that's when the helpful strangers are kind and decent people. Other kinds of helpful strangers are prone to asking, "What's wrong with her?" She is already afraid of how her child's life will be, of how people will treat them, of whether or not her child will be accepted. Loved.

She does not need you to add to these fears.

If you want to make her day and spread a little sunshine, smile and tell her that her child is beautiful and perfect. Then leave her be.

Posted by Andrea at 7:19 PM | Comments (18)


June 30, 2005

Welcome to Holland?

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A great article from one of my favourite magazines:

Have a Nice Trip: Metaphors for parenting a special-needs child

Just a little something to remember the next time you might be tempted to say something "comforting" to someone who is having a radically different parenting experience than you are.

Not directed to anyone here, though yes, I have been the recipient of this odd piece from time to time. Not all of us deal with things the same way or use the same metaphors to understand our lives. And that's ok. Right?

Edited to add: Frances is not disabled, and she's not sick; she certainly is not autistic. I don't want to seem as though I'm trying to put my experience into the same category. Clearly it's not. But just because it could be (much, much) worse doesn't mean I need to feel and demonstrate gratitude all the time to the expectations and satisfaction of other people who have normal, healthy, full-term, normally growing, typically developing kids.

And yet, from time to time, such parents have felt free to let me know (in subtle and not-so-subtle ways) that my emotions and my reactions to my experience are inadequate or wrong, because I'm not as happy or as positive as they think I should be. Sometimes that involves sending me a link to or giving me a copy of the ever-famous "Welcome to Holland." Sometimes it just involves telling me that I'm "too negative" or that "things could look better depending on YOU."

Welcome to Holland is a lovely piece, and Moreena I know has used it to great effect on a blog that I read just about every day and thoroughly enjoy. Many parents derive comfort from it and find that the metaphor is appropriate to their lives. But I still resent the judgementalism of anyone who is having a normal experience and feels free to tell me how I should feel about something that they have never and will never live.

This article is for them.

To them I say: If you haven't walked a mile in my shoes, then stop complaining about my pace or telling me that I should transport myself to Italy through sheer willpower.

Or at the very least, think before you say something similar to someone else.

Posted by Andrea at 12:58 PM | Comments (6)


June 29, 2005

An article about Dwarfism and Differences

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P.O.V. - Big Enough . What is Normal? | PBS

A good read, for anyone who is interested in learning more about conditions resulting in short stature.

Posted by Andrea at 1:27 PM | Comments (1)


June 27, 2005

Joiners

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I am biting the bullet and signing Frances up for the Little People of Ontario (LPO).

This was something I looked into when I was pregnant and was told Frances might have achondroplasia. As it turned out, she didn't, and then we went through the medical merry-go-round of Guess What Diagnosis Frances Has This Week, so I didn't think about it again for a long time. But if the medical experts are of the opinion that her adult height will be somewhere around 4' or maybe a bit over, and if her current height is comfortably on the achondroplasia ("true dwarfism") growth chart, then she definitely qualifies as a Little Person.

I've signed up for an on-line group called Parents of Little People, which is for parents of kids who have various kinds of genentic syndromes resulting in short stature and they have lots of good things to say about these groups and the opportunities that membership affords their children (camps and activities, and hanging out with people their own age who have similar issues, and so on). So LPO, here we come.

Posted by Andrea at 1:11 PM | Comments (4)


March 22, 2005

Obsessed with numbers

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Just so you'll all appreciate how completely and totally obsessed I really am, Frances's length gain velocity is in the 10th percentile, and her weight gain velocity is just over the fifth percentile, according to this fabulous article I found that plots the weight and length gain trajectories in handy, easy-to-use chart format which I would post here except it would totally violate copyright. But if anyone wants a copy, you might be able to pressure me to email you one. Anyway, this means that while her length and weight gain rates are slow, they are normal. Especially the length gain one. I am happy that she managed to grow a whole inch over the past three months. Very happy!

Although this complicates wardrobe decisions, as she is now on the cusp of requiring a new size. Do I dare assume that she will continue growing at this rate? She has for the past nine months. In which case she will grow out of her current clothes in ... umm ... June?

Rachel, this means she will be wearing the little outfit you bought her last summer, this summer, and it will fit just fine. I will have to send you a picture. Michelle, it also means she will be wearing that little yellow outfit again, since it's not restricted in length and she's so slim.

But yes, sometime in June I can actually start purchasing 12-month sized clothing that will not just fall right off, or trail behind her wee legs on the floor like Princess Di's wedding train.

Also, I read a really great article yesterday that studied infant and child growth velocities (see, I told you I was obsessed). And it was fascinating. Not just for those of us with peanuts either! What they did was take a large sample of infants and children and measure their weight and length every day. And what they found was that growth is not a continuous process, but highly discontinuous, so a child might actually stay the same weight and length for as long as two months, and then grow as much as an inch in as little as a single night.

So the next time you're looking at your kid and thinking that they don't look any bigger lately, they're probably not, and it's totally ok. And the next time you're looking at them thinking, My god, what did you shoot up in the night? How did you get so big? Yes, they probably shot up in the night.

Isn't that cool?

I didn't bring tea this morning. This is a calamity! I must go get tea.

Coming up: Tanya's Tuesday Tearjerker!

Posted by Andrea at 7:47 AM | Comments (0)