(o)

I know it has to be frustrating for you -- these are not just random strangers, whose comments you can forget, or shrug off as if they're just people with more mouth than sense. I'm not sure that I'd be as polite as you are about the whole situation. My Inner Bear comes out when I perceive that someone is doing wrong to my child, and I don't think I would be able to stifle the urge to tell them to go find a brain.

I understand that it's a natural inclination to want to downplay people's faults, or to make lighter of what could be more serious circumstances, but this head-in-the-sand attitude is not going to help Frances. They have to understand that even if Frances DOES have a growth spurt, she'll never be as tall as they wish for her to be. This means that she will need special modifications throughout her life.

I hate that Frances lives in a place where she will have to learn those negatives you speak of. I would love nothing more than that Frances can go through her life as happy and as content with herself as she is now. I hate that there will always be people who will see her as somehow lacking. I give credit to you, her parents, that she has been as happy and not made to feel "different" up to now. In her mind, she's just Frances, and that's the way it should be. I hate that the horrors of the world will one day pierce her own sunshiny armor. I wish there was some way that her attitude and her innate love of herself could be forever frozen just as it is.

I don't know what to say about the clueless people you allude to. I wish I had some tips. I wish they'd grow some smarts. Other than that, I think you are doing the right thing by Frances -- she seems perfectly at ease, so the problem is obviously not with her. It's with them.

It is my hope for Frances (and you) that the situation will improve with time.

Quick questions: do you have any predictions of how tall she will be when she grows up? Do you have any kids in the family who are that height now? Is there a time when you can talk to clueless relatives when Frances isn't there? Do you think a show-and-tell with those relatives with an actual physical model of how tall she'll be might help? Along, of course, with a few smacks with the clue stick.

Hugs.

Liz--we do. The doctors' estimate about four feet. But I think she's growing a bit faster than a typical child w/ achondroplasia, which if it stays true, maybe 4'3". Or if she has that growth spurt everyone keeps wishing for, 4'6".

Which is the height of an average 8-11 year old, depending; and we don't have any kids that size in the family. I've tried *telling* them this, mind you; but it hasn't had any impact.

I think we're going to end up using that clue stick.

OK,well, they should have gotten a clue by now, that's for sure. But perhaps in time they will "grow some smarts", as KLee puts it. In the meantime, I feel for you, having family members who cannot deal. It's ridiculous. Her size is such a wonderful part of who she is. I totally heart Frances and all things Frances, as if you didn't know.

A fellow Canadian unlurking here. The height thing is interesting. I don't understand people's fixation on it. I have two very tall children and one slightly short one. People comment on my kids' height all the time. I have noticed that people frequently treat the tall ones' height as some sort of marvellous achievement on their (or my) part, like they actually did something good, rather than just express their genes. I so don't get this. Although older people frequently take the opposite approach to my tall daughter, feeling sorry for her. When she was about 6, one woman asked her age and upon finding out, said, "Oh dear, that's too bad. Maybe she's just growing early." Right there in front of her.
I think people are just idiots about differences of any sort.

You know, I often find myself thinking that you are overstating how much trouble Frances is going to encounter as a small person; I find myself wanting to argue with you. I don't know why that is. Because my own daughter is small? I don't know. It must be a form of denial about what this world is really like...

You are not self-pitying; you're honest. You are facing things square on. You're braver than me, I think, and you're certainly braver than your extended family. From what you've said in other posts, it sounds like they're not only unwilling to accept Frances' reality, but they're also unwilling to see who their own children really are.

I hope that came out right. I was trying to say that this is my issue, not yours.

Hey, if she gets that growth spurt she'll only be shorter than me by 5 inches.

At 4'11", I have trouble finding cars I can drive and clothes to wear (and chopping veggies at the counter is not very comfortable), but everything else can be solved with stepstools. At 4'0" - 4'6"? She'll certainly have more difficulties with everyday things, but her personality seems to be so sunny that I'm guessing her height will be more of an annoyance than a barrier.

But it sounds like a job for the clue stick.

We are not taught how to deal with difference in our culture. I think maybe children today are being given more opportunity to learn about people who are different than my generation was, but I'm not sure that it's still enough.

When growing up, I was told not to look, not to stare. The right thing to do was to pretend the person wasn't different. This covered all kinds of differences - from people of different races to people with disabilities or physical differences to my friend Erica who's mother died when we were 7 or 8. I don't recall ever talking to her about that. My mother got cancer when I was about 12 and I don't recall anyone talking to me about that. We were different now, people wouldn't sit by us in church as though the cancer might spread to them.

I feel shamed because I still don't think I deal with differences that well. I think I should, but I'm not sure I know how. I'd probably find myself in the "she's so cute" group, because frankly she sounds so incredibly cute and precocious that anyone who knows her is bound to think she's cute. But as a stranger, I'm afraid I would be unlikely to say anything at all. I don't think that's the right response either.

I think your family members may just still be dealing with their grief, it takes longer for some people than others. My daughter is fourteen and it took many, many years for family members to understand and accept her and I think my own brother is still scared of my daughter (she drools). What I've found is that within our own home and our own family, Katie is not handicapped, she's just Katie. Our expectations have adjusted over the years but it's not until we got out in public that I realize how severely handicapped she is, because to me, she's just herself. Does that make sense? A lot of disability or handicap stuff comes from, I think, being compared to other people and yet we're all unique. Your daughter sounds lucky to have you as a Mum.

I think what it comes down to is this:

People sometimes don't know what to say, and so they say the first thing that comes to their mind. They build a conversation around nervous small talk. And they flounder. e.g your example of people insisting she's not small for her age.

Perhaps it's inappropriate. It was the same when people asked me if I was pregnant, if I wanted a boy or a girl, if I was planning on having another one. Or even worse, they'd pat my belly! Ack! I wanted to scream.

But I learned to live with it. Many people lack social grace. Many say things that sting but they don't mean it. That doesn't make it right, but they don't realize they've hit a sore spot. How could they know?

I may have said Frances was cute, and perhaps I made other comments when we met at ARM in the fall. I honestly don't remember. I sure hope you didn't interpret my comments as being deliberately malicious. Because it wasn't.

"She's tiny!" might be translated as "Wow, I've never seen someone like that" but it can't it be interpreted as honest wonder, nothing bad meant by it?

The previous comment about growing up and avoiding looking at people who are different is pretty interesting. People just don't know the right thing to say, and combined with their curiousity and desire to know, i'm sure leads to frequent cases of foot-in-mouth syndrome. Could you turn it around and use it as an opportunity to gently inform?

Sorry to hijack your comments Andrea. Your posts are always so insightful. I always appreciate your honesty.

I don't understand the avoidance reaction to the fabulousness that is Frances. She already faces physical obstacles, but she is a go-getter and she tries and does all she can. I could see someone pitying a child who gave up, but pretending Frances's height isn't a factor makes no sense. She knows, and she's happier than most of us.

N--welcome!

Jennifer--Yes, that made sense. And hey, *I* often think I'm over-anticipating, too.

I think it's going to be easier for her than it would have been for me, because she enjoys being cute, and I hated to be called cute even as a kid. And Frances gets a lot of "cute"ing.

Zazzy, I would not have a problem w/ either "she's so cute" (because she is!) or no comment. Obviously I can't speak for Frances's preferences, but neither of those would bother me.

Deb, that does make sense. I think I would have a lot more tolerance for this if it weren't that Frances is getting to the age to understand these things, and I was hoping they'd have managed to figure it out before this point.

Andrea, I must not have been very clear. I don't have a problem w/ strangers or non-family getting it wrong. As I said, dwarfism is very rare and most people simply have never had to confront it or even think about it. So they don't know what to say. I get that. But family is something else. Maybe I'm expecting too much, but I would have thought that in three years they might have started to get it.

And maybe that is expecting too much; but ultimately, I don't care about their feelings. I care about Frances's feelings. I imagine, if you had family members who persistently treated your daughters with something less than respect, you would feel the same way.

Andrea,

I find your posts so illuminating. I wish you the best of luck when dealing with these issues with your family.

We run into a lot of special-needs kids and their parents these days in our frequent forays over to the children's hospital in a neighboring state. The healthy-looking "normal" appearing children are the exception rather than the rule.

Sometimes I find myself mentally guessing at the children who walk past while I'm waiting with Baby E: "That child has cerebral palsy. That one has Down's synrome. That one has a speech disorder. That one looks like she has celiac disease or something like that; she's so thin and frail. That one looks so healthy; I wonder what brings him here?"

But more than anything else, I notice how beautiful they all are, each in their own way.

The 8-month-old who was unable to hold up her own head had the most gorgeous sweet smile and big dark eyes I'd ever seen, even if her face was unusually small and her chin almost non-existent. She was beautiful.

The 9-year-old child in the wheelchair had spastic muscles, unable even to smile or move her head . . . but her eyes roved around in a way that told me she was aware and appreciative of my smile and Baby E's wave. Her short dark hair was well-cared-for, she was warmly bundled in a lovely pink coat and a handmade blue scarf, and the love between the child and her caregivers (mother and grandmother) was palpable. It was beautiful.

The little boy with shriveled legs who was balking at riding a giant tricycle had sandy-blonde hair and a mischevious line near his mouth that told me he had a sense of fun and a spark, even though he wasn't enjoying himself at the moment. He had a softness in his face next to the potential for mischief that was beautiful.

The two sisters with curly dark hair, both about the same height, but the older one rail-thin with almost transparent skin were the most fun to watch. They laughed and played together, enjoying each other's company and tossing their ponytails. They both had lovely olive skin, bright eyes, and sweet interested faces. They were beautiful, too.

But I always wonder what the parents think when I say something like, "How old is your baby? What's her name? She's beautiful." Do they think it strange when I leave it at that, or do they appreciate it? I don't know. I'm sure it depends on where they are in their own mood and journey that day.

Hmmm, thanks for eliciting these thoughts from me. I think I just wrote tomorrow's blog post. :)

Thank you for another thought-provoking piece (and the pointer towards some important other ones!).

I'm also contemplating a spin off piece of my own. And is that not the best kind of compliment you can give a post, to say that it made you think and you want to write something related, as part of a dialog?

The issue that we deal with is that my son's disabilities are expressed entirely through his behavior: tics, compulsions, obsessions, frustration, hyperactivity, rage. Unless you know him well (and know a fair amount about Tourette's, OCD, and ADHD) it is all too easy to pass his actions off as an idiosyncrasy (and of course his tics & OCD are very idiosyncratic, though they follow a classic pattern), or as 'bad behavior', manipulative actions, bad parenting, etc.

It is particularly galling to be told that 'a good spanking' or a little consistency in discipline will 'cure' him. It reminds me of people telling those with severe depression to 'just cheer up'.

Ah, perhaps I'd better get going on that piece of my own instead of blogging here in your comments. I could call mine 'Assuming vs. Noticing vs. Knowing', though. ;-)

I really feel sorry for children/adults who have short stature.I wish they could have treatment even if just for a few inches.I am 5'2 and i still have to stand on chairs to reach things or out shopping i have to get someone to reach something for me.So i think that people will always have grieviances about something or other.I do find that the people who do make nasty comments are people who are not happy with themselves.So i hope Frances does get to have a happy life.GOOD LUCK