Monday, August 2, 2010

Short!

I'm reading Ruth Park's Swords and Crowns and Rings. So far, it's a delightful lovable book.

One of the main characters is a dwarf. I told Jack I was reading a book about a dwarf, and we chatted a bit about it. I was surprised that Jack has never seen a dwarf while out and about. Jack wanted to know if there's any type of dwarfism that makes people a few inches tall. I told him no...but that would be pretty cool. I think Jack was just playing around. He had that look on his face.

Anyway, I decided I'd like to know more about dwarfs...or little people. I think little people may be more politically correct, but I'm not sure if the terms are interchangeable for the most part. I hope it's not horribly offensive to say dwarf. I personally prefer that to little people. Little people makes me think of the Fisher Price toys. And not that there's anything wrong with those toys....although I preferred them when they were made of wood. But that's a whole other topic.

I think I'll start with Lord Wiki. What does he have to say about the topic?

Well, first of all he uses the term dwarf/dwarfism. And he says in the United States, they're called little people. Maybe it's different in Australia then?

In our conversation, I told Jack that I thought most dwarfs had a certain disease, and it started with an A. I'm right. Lord Wiki says this is Achondroplasia. This Achondroplasia accounts for about 70% of dwarfism.

Dwarfism can also be divided by proportionate and disproportionate dwarfs. If someone's body is proportionate, they're sometimes called midgets. Achondroplasia dwarfs are disproportionate. They have a normal size trunk area, and shorter arms and legs. Then they also have a larger head than normal.

Sometimes proportional dwarfism is caused by growth-hormone deficiency. At some point, someone told me that Jack is short for his age, and he might need growth-hormone shots. I THOUGHT that this had been Jack's pediatrician, but I've been reading my old journal entries, and I read that it had been an Early Childhood Intervention nurse that said it. Maybe the pediatrician said it too? But I don't think so. I remember being told only once. Anyway, that's kind of a strong thing for a visiting nurse to tell a parent....not very professional, in my opinion.

I was scared. Who wants to give their kids shots all the time? Later I decided even if he was unusually short, we'd probably skip the shots. Yeah, short people face hardships and prejudice. There might be dating issues. But such is life. I don't think we need to put ourselves through physical pain in order to fit in with society standards.

Now if Jack himself wanted the shots, I'd do it. But he HATES shots, and he doesn't mind being short. And I doubt he's going to end up dwarf short. He's low on the growth charts, but he's not off the charts.

Lord Wiki talks about how dwarfism causes employment challenges, prejudice, discrimination, bullying, and social isolation. I think that's a defect of society. It's society with the disorder, for the most part....not the dwarf.

But dwarfism CAN cause problems that can't easily be blamed on society. The stuff we use on an ordinary basis is made for people of a certain height. If you're shorter than normal, you're going to need to buy special stuff. And I'm guessing that costs more money than usual.

If you look at clothing, the majority we see at the store is made for people with a certain type of body. I have a hard time finding clothes. I have to try on like ten things to find one thing I like, and I never know what sizes to pick up. Recently, I took my measurements and it explained why. My chest is a size 4, my ass is a size 10, and my waist is around 12-14. I whined to my mom about this, and she said I need to buy clothes at the 12-14 size, and then go to a tailor to have them adjusted. But I don't want to to do all that. I don't want to pay all that money. I want to be magic so I can make my chest big, my butt medium, and my waist tiny. Maybe I'll try for the Rhonda Byrne approach for all that. It probably won't work, but oh well. It can't hurt to try.

Jack has issues too. It's very hard to find him pants. He's about a size 7 in height, which is not too far off, since he's almost 9. But it's hard to find stuff that fits around the waist. Even the slim pants don't often work. We go with the adjustable pants. Those DO work....sometimes.

My younger sister wears a size 3 in shoes. So she's a special one there. She has to do special orders if she wants adult shoes. BUT she can simply buy children's shoes. Some of them are cute, and work for adults....I think.

I know dwarfs have it harder than me, Jack, and my sister. I'm guessing they have stores to order their clothes? Maybe I'll look into that later. Still, even with special clothing stores, I'm sure people feel left out not being able to grab a shirt from Target, or a pair of jeans at the mall.

Lord Wiki says stress and malnutrition can cause dwarfism, but this would be the proportionate dwarfs. At least I think.....

Now I'm reading what Lord Wiki has to say about achondroplasia. He has a whole entry on it. The average height for males is 4 feet 3 inches (131 cm) and 4 feet 1/2 inch for females (123 cm). I was going to say that amusement parks are a place where dwarfs might face discrimination. But I know at Disney World, you can ride most rides at four feet.

I'm reading something interesting, but somewhat complicated. Let me if I can explain it...and understand it.

Achondroplasia is caused by a mutation of fibroblast growth factor receptor gene 3. This gene usually regulates bone growth, but if you have achondroplasia, the gene does too much regulating. Your bones don't grow enough.

If you have achondroplasia, you have one normal version of this gene, and one mutated version of the gene. If you had two mutated genes, you'd be dead. I guess this might account for some miscarriages?

This is how the genetics work. It's a dominant gene, so if you're a dwarf yourself, you have a 50% chance of passing that gene on to your child. There's 50% chance your child will be a dwarf and 50% they won't be a dwarf.

This differs from recessive genetic disorders. I used to be really into Cystic Fibrosis. With something like that, someone has to have two copies of the gene to actually get the disease. If parents each carry a copy of the gene, there's a 25% chance their child will have Cystic Fibrosis.

Now if two dwarfs get together and make a baby, there's unfortunately a 25% chance the baby will be born with two of the genes, and die. So, that's a worry. There's also 25% chance the baby will be of normal height. Then that kid can reach things for the parents when he's old enough.

Parents without achondroplasia CAN have a a child with achondroplasia. This would be from a new mutation.

I love the word mutation. It makes me think of X-Men.

The new mutations are associated with older fathers...those over 35. I think a lot of men are having babies at that age or older. Maybe we'll be seeing more dwarfs then.

There's no cure for achondroplasia, but dwarfs can use limb-lengthening surgery if they like pain, and are unable to accept themselves for who they are. I'm joking. I shouldn't be harsh. Most of us humans cause ourselves pain and mutilation to fit into an ideal of beauty.

Here's the website for the Short Statured People of Australia. I guess that's the politically correct term there....or one of them. They define short statured as anyone under 4 foot 11 (150 inches).

They say they have only 80 dwarfs as members in their organization. Is there that few dwarfs in Australia, or do not many people do the membership thing?

Anyone can join...even me. You don't have to be a dwarf OR Australian to be a member.

Here is their information guide. I'm going to look through it a little.

On this page, they have advice for parents of babies and young children. They say it may be beneficial to meet happy and thriving short-statured adults, so children (and their family members) can see there's hope of a happy and productive life.

I wonder though about conditions where adults are NOT healthy, and/or the disease is progressive. When we worked at the Cystic Fibrosis camp, there were children who were very mildly affected. I mean they were hardly sick at all. Then they go to this camp, and see very sick adults, and children who are deathly ill. Was it good for these healthier kids to see that? I don't know. The thing about Cystic Fibrosis though is it's progressive. So eventually the mildly ill children will become severely ill as well. So maybe the camp was a needed dose of reality? I don't know. Maybe it came too soon. Probably. But it's likely something you can hide for only so long.

At our wedding, one of our friends (the sort of Kiwi-one) did a very long speech about how much he loves us. In the speech, he talked about Cystic Fibrosis, because my involvement with CF eventually led to him being involved. So that was important to our friendship. And it also related to the groom, because we met each other at the CF camp.

Anyway.....my friend mentioned, in his speech, that people with CF don't live too long.

Tim's brothers were there, and all three of them have/had Cystic Fibrosis. Some people were horrified that my friend mentioned that the disease was fatal in front of them. I thought that was funny...a bit nuts. It's HIGHLY unlikely that these three men were unaware that they had a fatal disease.

The short-statured website talks about how kids will start asking questions. Basically, the site says to answer in honest loving and age appropriate ways. Parents should stress that although the child is different, they're still highly valuable.

As I have mentioned before, Jack MAY be autistic. We never got him formally diagnosed, but he fits some of the criteria for mild autism. I talk to him a lot about this, and always am matter-of-fact about it. I never turn it into a hush-hush type thing, and I don't think Jack feels any shame about the fact that he might be autistic.

I don't see anything at all wrong with being mildly autistic, so I don't treat it as something negative. I think I'd be the same with dwarfism.

It's probably different, and more difficult if parents are NOT cool with it. In Ruth Park's book, the protagonist's father rejects him because of his dwarfism. That's sad, but fortunately the mother IS accepting. If you're unhappy with your child's condition, then it's going to be hard to give them the impression that you like them just the way they are. I think they'll likely pick up on the fact that you're ashamed or disappointed in them.

There can be situations where you can love your child, but NOT be okay with their difference. I don't think I'd be super okay with my child being severely autistic. I'd love them, but recognize we're in for some serious hardships. I'd love my child if they had Cystic Fibrosis, but I'd be unhappy that they have this disease.

The website says parents of short statured children should allow them to be as independent as possible. Buy stools and ladders so they can reach things themselves, rather than doing everything for them. Don't be overprotective....like me. I still insist that Jack gets his hot dog cut length-wise. I DO let him use the stove himself though, as long as someone else is in the room with him.

The site says that some children will be distressed by having the same clothes for many years, and that... Such distress can be avoided if children can be dressed according to their age and the current fashion, providing that it does not make them look ridiculous.Or people can avoid buying clothes a the current fashion, since current fashions are likely to become something to laugh at a few years down the road. I think it's better to just buy clothes that fit, are comfortable, and that look decent on you. I wear some clothes that I've had for more than ten years. I DO buy new stuff (or new to me from the thrift store)....but I keep the old stuff as well. The same goes for Jack. He wears a mixture of old and new.

The age stuff makes sense to me though. You don't need a ten-year-old wearing his cutesy overalls from when he was four. Then again, Jack happily wore an Elmo shirt last week. And he CHOSE to do this.

The site doesn't say anything about special clothes shops. They say you buy clothes, and then get it altered. OR the parents can make the clothes themselves.

On this page, they give more advice to parents. One of the thing is to not treat your child younger than they are. Treat them their age and not their size.

I think that can be hard to remember. My friend's daughter is very short. She's five, and looks about three....or younger. I have to remind myself of her age. I think part of it came from her being shy though, and clinging to her mother. She didn't play much with the other kids, so there was the idea that she was the baby. But now she IS playing with the other kids, so I see her as being a child rather than a baby/toddler.

I think for young children, sometimes it's harder to be big for your age. Then people have higher expectations, and can't understand why you're acting such a way. Why is that child still using a highchair??!! Why are those parents carrying that child? She's old enough to walk herself! Why does that child talk like a baby. He's too old for that!
The other day we went to buy a mylar balloon for Tim's birthday. We went to the counter, and the woman working there assumed Jack couldn't read. She told him which shelves had birthday balloons. I let it go once, but then she said it again. I told her that Jack could read...Then he made me look like a fool by picking up a balloon that says congratulations. I was thinking, what the hell are you doing, kid? Later he told me, he did that because he couldn't reach the high shelves (where the birthday balloons were) He didn't understand that he just provided the number, and they had the matching balloon behind the counter.

I was wondering why the woman thought Jack couldn't read. I know he's short, but not THAT short. He's the size of a six-year-old....and I think a lot of six-year-olds can read. The ironic thing is Jack started reading when he was three. It was funny to see the expression on people's faces when they'd see him read something.

Anyway, although it's slightly annoying to have someone assume you're younger than you are, and therefore incapable of something....it might be more hurtful for someone to assume a child can do something, when he or she is not old enough or mature enough to do it. That can be an awkward moment.

This page talks about how a short-statured adult might meet up with a vocal curious child. They say the best way for that parent's child to respond is to say something lovely like,
Yes dear, we are all different, some of us are small and some are tall, and some of us are very small, but it doesn't matter. That's usually better than acting embarrassed and hushing the child. You could LATER gently tell them it's not polite to loudly ask questions about people, and to just ask quietly when you have some privacy. Although then you're teaching your child to talk about people behind their backs. Maybe it's better to be upfront and honest.

It all depends on the person too. We had a brief discussion in my family recently. One of us wanted to know if they should mention that a relative was having problems walking. Do you pretend it's not happening, or do you blurt out...Hey, what's going on with your walking?

Most of my family opted for the quiet approach. You don't mention someone's disability because it will make them feel embarrassed and uncomfortable. I'm more the other side. I prefer that people be out in the open about things. If there's something weird/different about me, I prefer that people blurt it out, rather than keep quiet about it. Why? I'm paranoid, and I figure people are talking about it behind my back. I'd much rather them talk about it WITH me.

Then again, I know of people with certain small defects, and I've never mentioned it to them. I worry that I'll embarrass them, or get them angry. So that's that. I guess I'd feel more comfortable if THEY brought it up first. I think that's often the best situation. But then there can be awkwardness there as well. What do you say when someone says I'm so fat! Well, often it's someone who's a size 2 saying that, and you just roll your eyes at them. But what if the person really IS seriously obese. Then what? If it's said in email, you have time to think of a kind, but honest response. Yes, you're overweight. But I think you're still very beautiful. Or....yeah, we all struggle with our bodies sometimes.

If they say it in person though... I'm likely to blurt out something dishonest and stupid like. No, you're not.

It's all....challenging.

Honestly, I have trouble with all of this. Sometimes I see someone with a difference....Let's say a child in a wheelchair, or someone with cerebral palsy. I feel confused about what to do....If I look at them....like I look casually at most people when they're walking by, I worry they'll think I'm staring. If I avoid looking at them, I fear they'll think I'm uncomfortable and avoiding them. So I usually try to look, but not too long. And sometimes I'll give a smile, which might be overcompensating...because I'm not sure if I usually smile at strangers. Maybe I do? I am a fairly friendly person.

Staring is a funny thing though. When my sister went through her brain-damaged stage, I'd see my parents staring at brain-damaged people when we went out in public. It might have looked like they were being insensitive and rude...cruel. But they were really just trying to understand their own situation more.

A dwarf might encounter an adult who's totally staring at them. They might think, How rude. I bet that person hates anyone who's different. I wish I could give them a piece of my mind. Maybe I will. But MAYBE that adult has a child at home that's just been diagnosed with Dwarfism. Maybe they're trying to get some idea of their child's future.

You really never know.