Showing posts with label OI child-like. Show all posts

In yesterday's post I talk about the difficulty with meshing activities/behavior with my actual age. Because I have such a short stature I have a tendency to get treated like a child or have childish expectations of me. Today's post is going to be the opposite issue. I'm not sure if it is just me or if other OI children feel the same way, but up until I hit my 20's I always felt decades older than I actually am.

Is it because I was constantly surrounded by adults as a very young child? Or because I had to learn many life lessons the difficult/painful way before I learned to ride a bike? Was it the different priorities that I seemed to have been born with? (That although life is fragile and scary you need to be bold with it!) Those hours spent at hospitals in the waiting room with a broken limb - so much goes on inside my head during those minutes. I remember feeling isolated, in pain, and yet needing to be patient, to be strong, to be brave - not just for myself but for my parents and other family members. Surely all of those thoughts slamming into one another like a domino effect at the age of 3, 5, 9, 15, and 23 must have had some impact on my mentality and thought process? To be honest I don't think my ability to think is any different than someone else my age, I'm sure of it!

In the moments before my orthopedic doctor pulls the x-ray up I am learning about fate and consequences. Those seconds I am realizing that it is a terrible fracture an innate coping mechanism kicks into gear. When strangers unintentionally shove their butts into my face I am learning how to find humor in everything. The skills of patience and rehab are honed every time I am done scratching the heck out of a freshly freed limb from a cast. Being the only one in my family with this mysterious fragility has taught me how to be alone and forgiving.
None of those situations come with some kind of magical manual that my orthopedic doctor handed to me when I was born; it wasn't like he said "Now when you grow up and turn 21 and need help with managing fractures turn to page 57 in this handbook." There have been countless times when I have wished for such a guide but of course no such thing exists. I have just learned how to deal with things as they come, this natural reaction to situations has become so fluid that I don't even think about things anymore. All of this is just all that I have ever known and it's life as I have come to love and live it!
But just because I might have been able to think like a 42 year-old at the age of 17 doesn't mean I had all the answers to everything (even though every 17 year-old believes she does). It seemed like I was so well versed and calm about bigger picture instances in life but when it came to the smaller stuff I tripped and stumbled just as much as the next kid. How do you ask a guy to prom? How will I be able to drive a car? How do I open my own bank account?

Never mind 17, even today I still struggle with a lot of things that I thought I should have "figured it out by now." How is it that I can calmly navigate my parents through a major rodding surgery and not explain to them that I don't want to live at home? How is it that though I have lived for years away in a dorm that my family still worries every time I am out past 9pm? And even though no one else in my family has O.I. - how come they don't understand the stuff about me that is non-OI related? The gap in understanding and maturity that I am constantly traversing can be infuriating, exhausting, and disappointing. But it's something I can remember needing to understand ever since I began kindergarten (I think it's just as important as learning how to manage fractures!); I'm not sure if there is a name for this kind of thing that I have been describing, but what I do know is that it's definitely a trait of having O.I. and one of the 'symptoms' I will happily deal with long after they find a cure to my fragile skeleton.

The Other Balance:

• Even though you've been through some life experiences that few others have, you're not supposed to have the rest of your life figured out (learn this sooner rather than later!)
• OI isn't just a condition that impacts your genetics or your bone structure, it's life encompassing and isn't always something that makes you fragile - you will be surprised at how invincible it can make you in other ways
• I have yet to learn how to do this and it's still a hugely difficult challenge for me today: understanding how to mesh the OI affected parts of your life with who you are as a person is key to this 'balance'
• Although people might assume that you have a better understanding of certain 'life things' - no one expects you to act any other way than who you are as a person
• Like I said, I have no idea what this 'mentality' that I have described above is called, but when it gets exhausting for you talk to your friends about it. Even if they don't have OI, friends are there to listen and to help - I have been surprised at the empathic abilities of my closest buddies 

"Mom no one else plays the recorder anymore. It's a baby instrument!"
"No other instrument fits you. The piano is too long and you can't reach the pedals, others are too long like the flute and clarinet. Your arms don't bend the way a violin is held, the trumpet is too heavy, and I won't allow drums in the house." 
"But I just want to sound like everyone else! All my other friends have music lessons! Pleeeeassseee.." 
"Fine - I'll go to the music school and ask the front desk what they think you could learn to play tomorrow." 


It was four years after the recorder had been first introduced to me in elementary school. I was now in the seventh grade and like any other twelve year-old just wanted to fit in with the rest of the middle schoolers. Playing the recorder, the plastic white one that the public school system universally dealt out to every third grader, was NOT the solution to fitting in. I probably deserved some award for having braved every orchestra class through the sixth and seventh grade with my tooting and squeaking next to the Violin I section. I don't remember whether or not I got flack from my peers for still playing the recorder at that age, although now that I think about it it's probably because I have mentally (and rightly so!) blocked much of that period of my life from memory.
Whether it was going to Disney World in a stroller when I was eleven, or being put into a baby carrier on my dad's back at the age of six when we went to China, or still playing the recorder in the seventh grade - there are countless experiences where my size and age didn't match-up. There were a lot of times when this mismatch messed around with my head; the mental leap of needing to span age differences of five plus years would sometimes make me uncertain as to how I "should behave," who I am as a person, and routinely tested my own levels of comfort. It was through these experiences that I discovered what I believe in and what I know is okay with me. For instance, my parents learned early on that it's not okay with me to buy me clothes from childish stores because I would prefer to get the smallest size at a more age appropriate place. Just because it fits doesn't mean it's okay! Or just because I am the size of a younger child doesn't mean I should not be allowed out with my friends, my bed time and curfew shouldn't be restricted to what might seem on the surface to match my size.

I know that all of this might seem so obvious, but I have been shocked by how easy it is for acquaintances or even family members to forget that my physical limitations should not dictate my life. Having O.I. can sometimes involve a lot of hopping around islands. One island might involve being fitted for a pediatric wheelchair, and then the next hour an individual is off to his first job interview, going to a school dance, or getting her license for the first time. I refer to them as islands because each moment seems so isolated from one another, I myself still have difficulty meshing everything together - but I always remind myself that I strive to do what is best and appropriate for me. O.I. might encompass my entire life but as I have written more and more of these blog entries I have come to see that it rears its head differently in every situation. Sometimes it's barely noticeable and like a chameleon it quickly changes color to blend in with the background, or sometimes it sticks out like a sore thumb - reminding me to slow down a bit and take it easy.  
So whether it's playing the recorder at twelve, being treated like a child when you're twenty-three, shopping at kid stores as an adult, or finally getting your drivers license as a middle-aged adult - having O.I. is constantly reassuring and reaffirming each of us who we are as individuals. Its odd isn't it? It's so easy to only think about the times when having O.I. might undercut our confidence in ourselves, or make us feel embarrassed but I'd like to urge all of my readers to take a second and think of one reason how having brittle bones has helped them understand their own selves better.

"Mom did you go and ask the music school today? Did they say something dumb like I could play the triangle? Cuz that's just stupid, I am not going to play the triangle -"
"They said you could try music theory." 
"What?"
"They said you could learn how music is written, and that you could write your own music. Does that sound like it would interest you?"
How could it not interest me?! Me? Write my own music?! And so it was that from the end of seventh grade to the time I graduated high school I took music theory lessons. This culminated in a song I helped to write for my high school chorus, and a slew of other pieces for the piano and violin. The evening the chorus was to perform the song I helped write I thought back to those years of embarrassingly pulling out my plastic recorder in the seventh grade. I smiled and laughed to myself wishing I could tell my twelve year-old self back then that in a few years I would be able to have some hundred voices singing the words I wrote.

The Balance:

• Parents and family members can help kids with O.I. by instilling a strong sense of self; this makes future accommodations and decisions easier to grapple, especially when that child grows up and needs to make choices on their own
• Sometimes you need to do things that must be done. I have found that these instances happen especially around things that I do NOT want to do. If you understand this then dealing with the more dreaded moments can be easier to swallow - you aren't expected to WANT to do those things, so at least you're responding in an expected way!
• The cheapest and best management technique is a sense of humor
• Though sometimes I am super self-conscious I have found that growing up with a condition that makes me visibly different from others has helped me put into perspective other situations in life. Reminding myself that I have come this far no taller than a yard stick helps to propel me forward
• It's okay to be selfish at times: Do things for you, and better yet because they are what's best for you (admittedly I have to learn this!)
• There are days when what gets me through my day is my desire to challenge others and prove everyone else wrong. Being able to surprise the world and people 'out there' can be daunting and exhausting, but if you think of it as an opportunity and an experiment where there is no correct expected outcome - the balance of who you are, what you want, and what you can do is then easier to manage because it's all up to you! 

 

We get it. OI'ers are small, our heads are usually larger than our bodies, we have frail little limbs and torsos, and we have higher pitched voices - the rest of you think we're cute as heck. But please, unless we look up at you with the need to be burped or need a change of diapers: Please Do Not Gush Your Voice At Us. 

I'm sure you know what I'm talking about right? That voice people have where every decibel out of their mouths is drenched in honey. My Gusher Radar goes off when a stranger gives me that smile where the corners of their mouths are practically tied with a dainty bow at the ends. And then they put their hands palms down on their lap and bend their knees a bit, then bend their back down a bit. It's always a bit - never a full fledged crouch or anything. Or if they are not crooking their entire bodies, it's their eyes. Some people will, literally, look down at me. Their eyes will level me in one glance, under cutting my years in one naive blink and remind me of the fact that they are adult-like and I am a kid who is still toddler height. When a person goes into that Gusher Position there are bells, whistles, even a mental siren that goes off in my head. Already my ears begin to shut down and my brain usually turns off for the next 2 minutes of sugar coated conversation. I'm listening though, don't worry, The Honey-Dipped Voice is just muffled in my head for my own sanity. But whatever the other party is yapping away about - I am never rude when this happens. I listen, my face just blankly allowing the honey to smother it.
It's not that it's just simply annoying or disgusting to hear after awhile. For me, anyway, it means that the other person has not only ASSUMED something about me - but then they went ahead and blatantly acted on the assumption. It's just rude. And then the rudeness quickly snowballs into awkwardness, and spirals into some out of control slipshod mess - usually leaving me with a look of disgust and the other person continues to be naive or visibly uncomfortable. By the end of the conversation I have either made it clear that I'm not under the age of 5, or that I clearly just stayed silent and smiled sweetly to get that free lollipop.

I know it's a baffling concept but I s'pose what my mother said is true: Too much sugar is never a good thing.

On Stopping the Gushing:

• The best way to handle any source of potential awkwardness or conflict is to be civil and polite. 
• Just because THEY talk to you in that way doesn't mean YOU need to respond in the expected age. Respond how you would normally respond to your friends or family. This usually gets the point across very quickly and in my experience the person changes their approach immediately.
• When you meet someone new and they give you the smile that is the onset of a gushing voice, I usually just give them a quick smile and then look away to avoid the conversation.
• Sometimes I have said "it's okay, you don't need to crouch down like that.." This gets the point across immediately as well
• Though I'm not particularly great at this latest technique, I've been working on sending my own condescending smile back to them. Pity the person who thinks that I am 3 years old and incapable of much else besides coloring!
• Tell yourself in your head "this person just doesn't know me yet" and it will help calm frustrations, anger, and disappointment in your own response back 

"okay you're going to feel a pinch from the clamp and then the needle will go in" I gave a microscopic nod, my eyes wide and dead set on the 5inch needle she held. 
"it helps if you close your eyes and take a deep breath in, and then when I say breathe out you should slowly let it out. It'll be over before you know it!" She put the clamp on and I shut my eyes.
"Dude you finally did it!?" Back at the dorms my friends gathered around and asked me how much I bled, and whether or not it hurt. All of them were universally agreeing that it looked 'totally cool.' The it being... my eyebrow piercing. 


Yes my mother was horrified, my dad said nothing, and my brothers thought it was awesome. Why did I do it? Why did I wait until sophomore year of college, and 19 years-old? How come I got my eyebrow pierced before I even got my ears pierced? TO LOOK OLDER.

Taken shortly after "IT" happened.

It was my second year in college and I was tired of being spoken to like a child everywhere I went. Somehow being alone in the world, without my parents, the way other people treated me became more noticeable. I hadn't noticed it until then, but I s'pose having my family and parents around was like having a shield to fend off blatant stares, condescending voices, and crude questioning. Just like any other 19 year-old I wanted to reach my 20's faster, I wanted to prove to myself that I was capable of "being older," but most of all I wanted to prove to all the strangers I passed on the street that I AM FINE.. AND DON'T NEED YOUR HELP. Four years later I realize how much fun that stage in life was for me, but also how silly at the same time. Through internships, work experience, the dating scene, and the help of friends & family - I realized that it's not at all about how "child-like" in stature one might be, but it's about poise and how you hold yourself. There's a confidence that I have gained in my life experiences that have helped me to gain a person's respect and feel less like I'm actually the same height as their leg.
The moment I realized that empowering myself allowed my diminished physical size to seem much greater was a time that I will never forget. It's as important to me as when I first started walking. There's a sense of independence, confidence, and accomplishment that is unique to me and something I can claim as my very own. If I could give every disabled individual something I would give them their own moment of that realization.

Suggestions on 'Seeming Older': 

• It starts from the inside. If you believe that you should no longer be considered a child, it doesn't matter if your voice is high-pitched or you're the size of a 6 year-old. In this case actions speak louder than images. Act the way you'd like to be treated.
• Being smaller means that you probably wear smaller clothes. But this doesn't mean you are stuck with clothes with child-like images and silly slogans on your (professional) attire. There are many tailors around who are able to create appropriate jackets, blazers, pants, slacks, skirts, button ups etc. Another suggestion is to buy smaller sizes of adult clothing and or get them altered. 
• This tip took me years to learn on my own, but there is a way to look at someone without tilting your head upwards 45 degrees with your mouth gaping open. Look INTO the person as opposed to UP AT the person. When meeting someone new, meet their eye-contact as soon as possible. The 'playing-field' will already be half-leveled before you know it. (This takes lots of experience and practice,especially if you're like me and rather shy!)
• If you are fidgety, try not to be fidgety with your wheelchair or other assistive device. Constantly fiddling with your joystick, belt buckle, or gripping your wheels will tend to draw more attention to the image of being disabled. 
• DO NOT be afraid to ask for help. Knowing what you need and how to get what you need is a sign of mature insight. 
• If you find yourself in a situation where you are being treated in a condescending way, it's YOUR responsibility to change it... in a way that is respectful, considerate, and try not to burn bridges as you do so. Sometimes saying something like "well it's good to know I'm aging so well, but I'm actually..." or "Can we find a place for you to sit as well instead of kneeling uncomfortably?" Making light of the situation, or changing it to 'accommodate' the other person tends to do the trick!