Saturday, October 29, 2011

"What's wrong with her?"

Yesterday, I took the girls down to the park. The weather is perfect for it these days, it's starting to cool down but not too cold yet. The girls love it - Lana loves running around and really doesn't need much supervision these days, and Maddy loves to scoot around on her bottom - I'm sure she's going to wear a hole in the bottom of her clothes!! And her AFOs are getting quite disgusting, even though they are only a month old. 

Lots of kids from our apartment complex spend their afternoons there, and they all get to know each other by name and play together. There is one little boy who is Maddy's age (and twice her size) - and he has a big brother who is six. 
Yesterday, Maddy was playing with her little friend when I heard the brother asking his caregiver:

"What's wrong with her? What happened to her arms? Why are they so small?" 

I have to admit, it stung a bit. It's the first time that I've heard anyone asking these questions out loud. I know there was no malice, only a child-like curiosity, but I still don't know exactly what to do in these circumstances. I also know that we will have many of these kinds of questions and we need to learn how to answer them.

In this case, I figured that the questions were not aimed at me so I didn't say anything at all. I know that we will see these kids over and over throughout the winter when we go to the park instead of the swimming pool - so maybe I should satisfy his curiosity with an age-appropriate honest answer, much like I gave Lana when she made similar observations? But on the other hand, I don't feel like we necessarily owe everyone an explanation either, particularly if they aren't even asking us in the first place.

It's so hard to know the appropriate response... I'd love to know your thoughts, so please comment with your opinions :)

Friday, October 28, 2011

A few videos

I haven't shared any videos for a while, so here are four for your enjoyment :) (if you're a facebook friend, you may have seen one or two of them before)

1. We went to Phuket, Thailand four weeks ago. At the airport, Maddy had a great time rearranging the furniture in the kids play area.

2. The airport play area also had this xylophone thing that Maddy loved :)

3. I'm trying to get Maddy ready for self feeding - she can feed herself by hand pretty well, but using a bowl and spoon is pretty tricky for her at the moment. After I feed her, I usually give her the spoon and bowl to play with so that she can get used to it a bit more :)

4. Maddy is getting better and better at standing unaided!! She can now stand for probably around a minute. The AFOs really help her to stand much longer - without them, she can only stand for a couple of seconds. I'm so proud of her!!

Monday, October 24, 2011

Meet Jadon and Kalina

When I was pregnant with Maddy, and particularly in her first few months, I talked to so many other parents of kids with DD. When Maddy was born and had some trouble with her airways, someone introduced me to Ember. She has two gorgeous kids, Jadon and Kalina, who both have DD the same as Maddy, and they both had airway issues at birth as well (although actually Jadon and Kalina's were more severe than Maddy, requiring them to have a tracheotomy (breathing tube) placed). 

Ember has just started a blog about her kids - Jadon is currently in the hospital preparing to have spinal surgery. I've loved reading about their adventures and seeing more of her gorgeous kiddos. 

You should go check them out and offer some support too!!

Sticks and Stones

Almost everyone has heard the phrase "sticks and stones may break my bones, but words will never hurt me"  - and almost everyone knows that it is a complete lie. Words can make wounds that take far longer to heal than the physical. 

For every difference, there is particular terminology that is considered "politically correct". There are phrases which society deems "appropriate" and other phrases that are less appropriate. Some of these phrases, it seems as though everyone is aware of (very few people use the "n" word for African American these days without knowing how offensive it is), others are moderately well known (most people would not call a child with Down syndrome "retarded", but many people still freely use the word "retard" and "retarded" to mean foolish, not realising that doing so is just as offensive), and there are some which are even less well known than this. 

The term "midget" is offensive to many people with dwarfism - many "LPs" (little people) and "POLPs" (parents of little people) get VERY upset when they hear this word used, even if it's in the context of a child sports league. Yet it seems as though very few people outside of the "dwarfism circle" are aware of this. I only learned that the word was offensive through contact with other people with dwarfism, and it wasn't until Bernard mentioned to me that he when I was pregnant with Maddy that he wasn't sure how to explain that Maddy had dwarfism to his colleague and he told me that he'd said "She'll be a midget" that I told him that the word was offensive.

Because I know that the word is offensive, I do not use it personally - (and neither does Bernard). But  in spite of this, I am very aware that very few people in society are aware that the term is offensive - so I try not to be offended by people using the word. If someone asked me "Is your daughter a midget?", I would reply "She has dwarfism - that is the preferred term", without being offended at their innocent usage of a word they were unaware could offend. However if we were walking and people started yelling out "MIDGET!!" at Maddy, I'd be very offended! I would be just as offended if they were yelling "DWARF!!" though, since it is the manner in which it is said which is most offensive. 

Sometimes I see people who seem to be always so offended by others, and I don't think that being so sensitive would be doing any favours at all to Maddy. Maddy is going to attract attention wherever she goes. She is going to have stares, questions, comments... some ignorant, some unwelcomed, some hurtful - and she will need to learn to deal with them. I remember reading Matt Roloff's biography and in it, he came home crying from school because some kids had called him "short", of all things. His dad responded something along the lines of, "But honestly, Matt - you ARE short. It's just a fact".

When it comes to the term "midget", when I hear it used, I do mention "are you aware that the term "midget" is considered offensive?" At the same time, I ask myself "was the word used in an offensive way?". If the answer is "no", I try not to get offended by it because I don't want to teach Maddy to be offended at things that people say innocently or in ignorance. (It's funny though, because one of the "preferred terms" for dwarfism is "Little People" - which I personally find very condescending, particularly when used for adults. I personally prefer using the terms "dwarfism" or "short statured".)

So I guess what I'm asking my friends, relatives and other readers - please be aware that the term "midget" is offensive to many people with dwarfism. And I'm not asking a one-sided thing here - I will try not to be offended by anything said or asked in ignorance, and I will try to teach my children the same.

Friday, October 21, 2011

Two false assumptions

As part of Dwarfism Awareness Month, I wanted to post one more "awareness post" - two things I would love for the world to understand about dwarfism (and disabilities in general).

1. Just because someone is small doesn't make them "immature"
Maddy may be the size of a (very plump) 3 month old - but she's NOT 3 months old, she's 14 months old. To treat her based on her SIZE rather than her AGE is not appropriate. A child with dwarfism might be 12 years old, but he may be the size of an average 5 year old. There is a huge difference in maturity between those two ages - and no 12 year old wants to be treated "like a baby". That is just as true, maybe even more so, for a child with dwarfism. 

2. Just because someone has a physical disability doesn't mean they must be affected cognitively as well
This one doesn't just go for people with dwarfism, but also people in a wheelchair, people who are blind, or deaf... even people who have no control of their bodies at all. Very often, these people are not cognitively affected at all and understand everything that is going on around them. They notice stares, they notice people talking about them, they see the mothers "shushing" their children. It is also insulting to talk slower or louder to people with a disability based on a false assumption that they are intellectually affected. And people with dwarfism are very rarely affected cognitively, meaning that their minds are as fast and as sharp as your own ;)

Sometimes I know that people are unsure of how to talk to people with a disability - even I am not so confident all the time. But the best thing is to ignore their physical differences and talk with them just as you would anyone else. Chances are you may have more in common with them than your differences.

Monday, October 17, 2011

Teaching our kids about dwarfism

The other day, a friend visited with her three month old baby. A gorgeous boy with these long arms and legs  I've forgotten how to hold a baby without dwarfism, all those long limbs sticking out at awkward angles. And to me, they look so "different" - it's funny how now, a baby with dwarfism is "normal" to me and a baby without dwarfism is the "different" one. 

I never knew, until the other day, that the same is true for Lana. 

"Mummy, why does baby S have BIG arms??? Maddy has little arms and baby S has BIG arms"

I honestly didn't know what to say at first - I was dumbfounded that she actually noticed and asked. I was amused that she too thought that baby S was "different" for having "big arms". 

I didn't expect to be answering these kinds of questions so soon... 

Later, after I had a while to think about it, I decided that I should be upfront about these questions and use this opportunity to start to teach Lana about dwarfism. Not too much - just a little bite-sized nearly-three-year-old answer...

"Lana, you know how baby S has big arms and Maddy has small arms? It is because Maddy has dwarfism. That means that her bones grow very slowly compared to you, baby S and most other people. Maddy's arms and legs are very small, and Maddy will always be much smaller than you."

I know maybe there's a better way of answering those questions, and probably a lot of it didn't really sink in yet. I know that there will be many, many questions over the next few years (and decades, even) and my approach will be the same - be upfront and honest with them, giving them the appropriate amount of information to answer their questions without overwhelming them.

And that's how I'm trying to teach my kids about dwarfism.

Monday, October 10, 2011

Dwarfism Awareness Month

The LPA (little people of America) has declared October to be "dwarfism awareness month". Last year, I posted a bunch of facts about dwarfism in this post here. I'm not going to post a bunch of facts again (they'd probably just be the same as last year anyway) but I wanted to share a little video with you all.