Fracture Free Friday

In every Fracture Free Friday post I will answer one question that is submitted by a reader. Please note that these questions do not have to be OI-related and can cover any topic that you'd like to 'hear' me babble about. Send your questions into   

Fracture Free Friday Q: How do you handle kids when they stand directly in front of you or besides you and just stare? Do you ignore them or say something? What do you say if they ask, “Why are you in a wheelchair?” or “Why are you so little?”

A: The little tots and sometimes even babies will just pop out of nowhere! They waddle up to my wheelchair and with their drooling gurgling mouths will try to suck at the joystick, or roll my tires. Usually I look around for an adult who is chasing after them - arms out wide, feet spread out, and a totally horrified look on their face. 
"I'm so sorry about this... he's just curious."
"It's okay, don't worry about it" I smile down at the small human, uncertain if I need to explain my existence; then I realize that ten syllable diseases might be too much for a kid who doesn't know her elbow from her head yet. 

Kids can tell. They always can tell and they always announce it when they can! There are no boundaries with them and any 'oddity' or slightly different pattern from the norm will catch their attention like gnats to fly paper. Eyes widen, faces stricken with awe, and if you ever wanted to see what having something on the tip of your tongue but you can't say it looks like - just watch a kid looking at a small human cruising in a wheelchair for the first time. 
Do you explain to them that your bones are brittle? Will a simple "I have trouble walking" put a stop to the gawking? What about "I'm disabled" ? Or I have known some parents to explain to their child "she has a broken leg" (when actually I don't...) It can certainly be confusing because you don't know how much is too much and whether or not you are stepping over parenting boundaries - what if their parents want to teach them about disabilities or differences in a way other than how I am explaining it?
I have clearly over thought this situation too many times as I'm sure many of my readers have as well. When it gets down to the moment though it usually depends on how I'm feeling. Sometimes I quickly assess how old the child might be, what she or he may understand and also how open the adult they are with seems. Some of my "fall back" answers when I'm not sure what to say have been: "my bones haven't grown very well" or "I have trouble walking so the wheelchair helps me." 
These responses, I hope, are covering some basics that most children by the age of five have understood. In other words, at this age they (I am assuming) understand that their bodies should be growing bigger, and that they have all experienced a time when they have needed help from mom, dad, or a stroller. It's not to say that I am comparing the wheelchair to a stroller, but the assistive device has a similar function to my life as the stroller does to theirs. 
All of the above is if I am in a good mood. Sometimes though I just don't want to explain myself, or I get the sense that their parents may be embarrassed by their child's questioning and want to answer the inquiries themselves. In these instances I pretend to ignore but I'm actually listening. I smile at both the child and the adult, give a "hello" and wait to see if either the adult or child addresses me directly. Sometimes parents will say "well you can ask the lady herself" or they will kneel down with their kid and look at me as well and give an explanation: "she's sitting in a wheelchair because her legs are broken" or something similar. 
As an adult I think I have a better sense of what would be appropriate to say and what would not be. When this happened to me as a young child I would feel completely embarrassed and sometimes just seek out my parents or older brother and cower besides them. I remember a few times though, as a child, when I would simply say "my bones break easily and I can't walk well" - then quickly brush the gawking peer off. But I also remember times when, as a kid, other kids would simply just approach me with a shy "hi" - they knew something was different, but they also knew that I was still a child myself and were uncertain of how to behave. I remember those times were moments when I could feel myself gaining more confidence in who I am. 

Now that I think about it I realize that despite these instances happening frequently, I always do feel a little awkward. Maybe it's because I am just uncertain of how to behave around children who are younger than eight years old, but they do make me nervous! I think a part of me feels like I might be their first introduction to a 'wheelchair' or to the concept of a disability, and thus don't want to "mess it up." But another part of me also feels like maybe I'm not so sure of how to simplify osteogenesis imperfecta myself! The condition encompasses my entire life, how do I respond in a way that a young child will understand but also be as accurate in my description as possible? 

Readers: Let me know of some responses that you have given in these situations. Email me your responses and I will post them in a separate entry!

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