Showing posts with label OI high school student. Show all posts

The high school cafeteria swarmed with new and unfamiliar faces. Teachers milled about but only for the sake of being there because everyone knows that this is the place where every teenager is for him or herself. As a 9th grader I was a new student, but I was totally new - my family had just moved into town during the summer between 8th and 9th grade, I knew no one and more importantly no one really knew me.

We both know that you're only pretending not to listen right now, so let me just state my two cents and then you can go back to writing poetry while you listen to Linkin Park at full blast.

Around this time of the year many high school seniors are trying to decide who they are, what they want, who they want to become, and where they will go. As if these questions were not already overwhelming for anyone to answer, navigating college selections can be a convoluted process. Whether you are deciding on your major, clubs, food, scholarships, or accessibility - the questions that you are weighing can probably be divided into those questions that impact you as a student, and those that affect you as a person.

When I was choosing colleges I remember feeling incredibly frustrated because the adults in my life seemed more concerned with The Person, than the student. In other words, I think my going away to college and experiencing independence for the first time terrified my parents. They were concerned with making sure that I stayed within the state, they wanted me no farther than an hour's drive away from my orthopedic doctor, they wanted to be sure that the school would be able to handle me if I fractured, they even wanted to know if they could have access into my dorm room! The barrage of questions and concerns drove me nuts.
At that point in my life my fractures had begun to dwindle, and I was firmly entrenched in a stubborn-adolescent-independent mindset. The "I know everything and your opinion doesn't matter" attitude was my response to every question asked of me. But of course I didn't know everything and I mistook my parents' concern for my well being to be a source of annoyance and overbearing.

With that said, my piece of advice for any seniors in high school applying to college is to listen to what those around you are saying. The more information you have the better informed your eventual decision will be, and finally, realize that this is not supposed to be an easy decision. It is supposed to be a hassle, frustrating, and at times may make you feel like you're hitting your head against the wall over and over! But once you've gotten this first step into independence out of the way, just think about how easy it will be to take the next step and all the other ones to follow!
The process of choosing a school is an investment in yourself in the present and in the future. It will come with its difficulties and uncertainties that might not all be figured out until you are actually on campus. I'd definitely encourage visiting campuses as much as possible and meeting with as many college staff or current students as possible; go straight to the source with your questions and trust that thousands of students before you have made the same trek and done it successfully - soon, you'll be among them.


Since each person's college search is unique to their needs and each school has different resources, it's difficult to list specific advice to help with the process. I'd be more than happy to try and help answer more specific questions via email: oi.perfect@yahoo.com

You can also check out this article that I wrote to learn more about my first foray in independence in college: A Protective Bubble of My Own 

We were sophomores in high school and the class was Honors Biology. I had no idea what I was doing in this class or why I had even signed up for it; I was not ever a science person and nor will I ever be. But I suppose to a fifteen year old the important thing was that all my other friends are taking this class, so I will too!


Like many other field trips I had in the past the school had gotten a separate accessible bus for me, and a few of my friends who I got to choose to ride along. This was a tradition that had begun when I was in kindergarten and I could not imagine it being any different!

As I got older my friends all told me that they much preferred to ride in the "special Sandy bus" because the seats were comfier, there was heat / AC, and best of all we got to control the radio. So this field trip began like all the others - I chose 4 of my friends to ride along with me and we were off to visit some lab at some university to do some experiment. (I told you, I'm not a science person!) Getting to the lab was easy, all we did was follow the yellow school bus that drove in front of us. My friends and I were having fun chatting and goofing off in the back while the driver got us to where we needed to go. We got to blast the radio, sang along to all the songs, and at a few stop lights we swapped silly faces with the kids in the back of the yellow bus that was ahead of us.

It wasn't until after that experiment at that university at that lab was done that the field trip took another route. I mean, literally. Did I mention? I had no aide at the time, so in other words there was no adult with us. After we were done with the experiment and the class was getting ready to leave, I waved at my biology teacher and she nodded at me - gesturing that it was okay for me to get on my van. She also checked off on her list the 4 other students that were going to be riding back on the bus with me. So, the coast was clear. As far as she knew me and my friends would get on my van and head back to the high school.
Getting 40 other students, doing a head count, and then reading off the attendance list onto a big yellow school bus can take at least 10 minutes. By that time my friends and I were already buckled into our seats, I was strapped into the van, and we'd chosen our radio station for the ride back.

We left before the rest of my class did.

None of my friends or I had any idea as to where we were, how to get back to the high school, or which left to take. The driver had some idea but he wasn't totally sure. So when we got onto the high way he asked us which exit it was and we all looked at each other and shrugged.
"So should I take this left?" 
"Umm.. okay? Sure? We don't know."
"What do you mean you don't know!" 
"Yes! Take this left!"


Before we knew it we were suddenly in the terminal of the international airport. Without anyway of backing out again the driver was forced to pay the $6 fee to go through the airport tolls, had cursed us, and was now blindly taking left turns until we got out again. Needless to say that although we left earlier than the rest of the class, we got back way later.
"Sandy, are you guys just getting back from your bio field trip?"
"Yeah." 
"We've been wondering where you guys were!" My guidance counselor said to me. I looked at my friends who were on the bus with me, we were all grinning - empty coffee cups in hand and all.
"Where did you guys go? Why did you get back so late? And why do you have empty containers in your hands?!" 
"Umm the bus driver took a wrong turn and we wound up at the airport. Then we got him to stop at a cafe so we could pick up snacks and coffee..." 
My friends and I laughed; shaking her head in disapproval my guidance counselor had no words to say to us and just walked away.

Standing at roughly 3 ft, cruising around in a power wheelchair, bowed arms and with other key features of O.I. it's pretty obvious that I have a disability. Despite all of those visible clues I still find myself trying to hide my disability. My futile attempts occur less frequently as I have gotten older and as I have become more comfortable with myself; when I was younger though, I went through all kinds of ridiculous extremes. Whether it was out of embarrassment, shame, awkwardness, or just a strong desire to fit in - hiding my disability came about in various phases and stages. At first it was hiding physical differences, then it was about hiding my limitations, and as I got older it was all about over compensating for my handicap - pushing my other abilities to draw attention away from the O.I.
As a kid I went through a phase where I spent months getting around in my tricycle only. I rode it around the house, around the neighborhood, even begged my parents if I could take it to school (they drew the line there - but I think I took it to show and tell one time..). Realizing that I couldn't walk without the assistance of leg braces and a walker -- contraptions that no other kid I knew needed, I loved the tricycle because not only was I able to get around without anyone else's help, but other kids used bikes too! In my eyes I could look 'normal' for once!
This was looong before I got my power wheelchair. My physical therapist was still working with me to teach me how to put my leg braces on, how to safely climb in and out of my wheelchair, and gaining the muscular endurance to push myself for longer distances. I wasn't interested in any of that though. I just wanted to pedal away to my heart's content.

Beginning around the third grade through high school - I never wore shorts or skirts to school. During these years was when it looked like I had two knees on each leg. My tibia was incredibly bowed and after one particularly annoying day of kids whispering and pointing at my shin - I refused to show my legs ever again. It didn't matter how hot it was, whether or not the school's air conditioning was working, or if we had gym class - I was adamant about never wearing shorts again. In fact these were the days when I would force the shin guard of my leg brace over the almost 90 degree curve of my tibia; it was common for me to come home with bruises on my tibia from where I had tried to flatten the bone down with the plastic piece from my leg braces. By the time I was in high school I had already had several rod operations and though it no longer looked like I had two knees, the surgical scars on my legs bothered me. The scar tissue ran the length of my shin, from my knee to my ankle and being a fairly private person about my body and the way it looked, I wasn't interested in entertaining the curiosities of my classmates and friends. I didn't think I knew what to say, how to say it, or knew how much information to give. Besides at this age everyone's mentality is to fit in, to not be ostracized, to not show weakness or at least... if you could help it hide your vulnerabilities and oddities.

High school was also the time when I took off with my passion for writing. My English teachers took special interest in my ability to write - be it poem, newspaper article, short story or just a plain old essay. With the guidance and encouragement of a few teachers in high school I found something about myself that was not only hidden, but something (unlike my disability) that I had full control over. I chose which words to use, how I wanted phrases to flow, what images I wanted to conjure in my readers mind, what problems I wanted characters to face, and how everything would be resolved. Immediately (and this is still true today) I recognized the ease at which I am able to express myself through writing - on paper there is no judgment or questioning stares from strangers or my peers. On paper everyone starts with the same blank page, the same capital letter, and ends with the same period. To this day I am painfully cognizant of how I am able to connect with people on paper in a way I haven't found out how to do in person... but I think I'm getting there. So it was, that during high school, I began to 'learn' how to hide my disability behind the things that I am capable of. I taught myself how to draw attention away from what was obvious and became known for the girl who wanted to be a writer instead of "the small girl in the wheelchair." It wasn't long after that I became involved in the student newspaper and the literary magazine, with some persistence and work I changed the way my peers and the student-body came to see me.
I think that every person with a disability goes through something like this. At least I hope everyone does. For me it was a time to discover what I am capable of, what I enjoy doing, and learned more about myself that went beyond the day-to-day challenges I faced. So much of the time the disability might consume our lives that we forget there is a person underneath all of the medical care. And so when the day comes that we finally find something that we can do well, that is safe for us, something that WE CHOOSE to do and to be, and is something of a 'gift' - it almost seems to propel us to some other high that we will cling to and throw at others who don't know us very well, as if to say "here. This is the real me. Not the person you see before your eyes. This is who I choose to be and who I want you to know instead." This self-discovery was like a catharsis 18 years in the making, a relief to know that I had an option about who I wanted to be and what I could be capable of.


On Hiding Myself:

• I think that because I was the only OI'er in my family, and the only OI'er I knew in my life growing up - my attempts at hiding my disability were inevitable. 'Hiding' my disability was my survival technique so to speak, it was how I was adapting to the world and everyone around me
• It wasn't until recently that I came to realize why I did the things I was doing as a kid/teenager. It is one thing to realize your behavior and something else to change it, the latter is what I am slowly working on these days
• Aside from me, my parents have two other children - my two brothers who are unaffected by O.I. My parents didn't cut me any slack because I have O.I. or because I was in a wheelchair; I had the same expectations as my brothers and that was to first and foremost do well in school. With that in mind I don't think my parents realized what I was doing by 'hiding' behind what I discovered I was capable of - instead they just encouraged my skills and strengths!
• I don't regret the way my parents raised me in this way, I've certainly come quite far in what I have accomplished and am proud of all of it. I'm glad that they pushed me and didn't allow my disability to be an excuse and so many times my only options were "yes you can do it" and "you must do it well"
• A part of this entire process, I think, is becoming more comfortable with yourself. Not just what you see in the mirror but the implications of what having O.I. or any disability means. I'm beginning to learn that this 'meaning' won't be set in stone for as long as the status of your disability / O.I. changes and impacts who you are as a person over time. Being okay with this fluctuating and changing status is definitely key     

While writing the post about my self-image and self-worth in high school  I struggled with accurately remembering how O.I. impacted how I saw myself. I could only remember my behavior and the things that I did, not my actual thoughts. Well....
I dug through the archives of my writing and found an essay I had submitted to the OI Foundation in 2003, I was a sophomore in high school. I've reproduced it in its entirety below and after I read it the first time in 8 years I was stunned!

WHS was the kind of school where no kid would ever get lost in the shuffle. The school was tiny and the population of students inside even tinier. It was safe, cozy, New England style 'quaint,' the janitors recognized every face, and the librarian knew which forgetful teenager had yet to return which book. In a large binder in the Attendance Office, anyone could easily look up any student's schedule and find out where s/he was supposed to be. Only juniors and seniors were allowed off campus during their 90min 'free blocks' and even then you had to have signed parental permission. It wasn't just a school where everyone knew who everyone was, you could technically also know where everyone was.

Continued from previous post

The days leading up to the night of my big announcement was a flurry of the longest days I have ever known. If I could take all the times I had been put under anesthesia then woken up in the recovery room, and lined them up from beginning to end.. for about a month and a half, that would be what those days were like. They were a blur of logistics, of waiting, of being patient, the pain and anxiety of not knowing specific details  I knew I was going to go to D.C., I knew that my parents didn't stand a chance at stopping me, I knew that I could do it, but I hadn't quite figured out all the pieces of HOW yet.

With the patience of my friends, my home school's Disability Services Office, my study away program's Disability Services Office, and the 18+ years of being raised by parents - I knew that things would fall into place. I'm not sure if they realize it today, but the biggest factor in my success of going away was how my parents had raised me.
Maybe it's because I am the middle child of two unaffected brothers, maybe it's because my O.I. is a mild-to-moderate form of the disease, maybe it's because my parents always knew I was capable - I'm not sure if I'll ever find out. But my parents always pushed me to "be exactly like everyone else." Everyone else in this case meaning all of those who were unaffected. I was expected to play sports, to participate in P.E., to put school work before anything else, to use my potential to its fullest before I even discovered it! Growing up I had witnessed countless moments of what, back then, had seemed embarrassing times when my mother would exchange "critical words" with school officials. "Sandy should not this..." and "Why have you put my child in that?!" or "I am the parent and I know her best, she doesn't need this..." there were plenty of "Why have you denied Sandy this?" and even more "You guys are not doing enough for her.." When I was six, eleven, fifteen, these incidents were horrifying for me to witness. I wanted to sink into the gel seat of my wheelchair and never surface again. At the time my innocence felt that BY ARGUING FOR my rights, and for an equal playing field, my parents were only highlighting my differences. That they were only making me stick out like a sore thumb even more!

It wasn't until that moment when I had found something I wanted to do more than anything in the world that I realized what my parents had felt; by that time I was a little more than 10 years older than when I had wanted to hide under the bed every time my mom's broken-English stumbled out of her mouth. So it was out of admiration, awe, and endless gratitude that I began to send emails, made phone calls, held meetings, and made all the necessary connections on my own. This was the most important. I wanted to do ALL of the research, back-work, make all the connections on my own - or at least without the help of my parents. I knew that if I could show them I was capable of doing that much their argument against my leaving would be moot.

There were countless meetings with my home school's Disability Services Office, then hundreds of other follow-up emails with the office at my study away school. Hours of research was spent on navigating D.C.'s metro system, even more time was taken to ensure I would have access to a wheelchair company in case something broke down. I met with my orthopedic and got checked out to make sure that I was "okay" to leave. My doctor at Children's gave me the name of a colleague at a hospital in D.C. who was knowledgeable of O.I. I had to ask thousands of questions about the accessibility of the dorms and campus: would the campus be plowed? What happens if I get stuck in a snowbank? How would I get to the hospital in the case of an emergency? These and many other questions were added to a list that easily became longer than my own 3ft self. How did I think of these questions? Easy: I pretended to think like my parents.
I literally would spend hours alone in my dorm room trying to think of all the possible scenarios that might happen to me in D.C. and consider what my parents would throw out there. As the days when by the questions were either answered, or they were crossed off the list as a "non-issue."

Finally, that day when I would tell them I was leaving arrived.

It was quite the process getting my parents to let me live in the college dorm. A dorm that was only about 25-30min away from home. What would happen if you got hurt? Who would take you to the hospital? Does the school know what they're doing? Who is going to help you when you have a cast on? Everything is already accessible at home - why do you want to make it harder for yourself by moving out? These and other questions was the uphill battle I fought during my senior year of high school, all the way up to the day I moved into my dorm. As an 18 year-old I was furious with my parents for wanting to keep me at home. In my opinion they should be proud that I wanted to leave the house, that I wanted to seek my own independence, that I felt ready to try living on my own. Didn't they realize that the reason I felt ready was because of the way they had raised me? Shouldn't they be flattered? But no, they wanted to keep me home. To keep me safe. To keep me secure. To keep, for the SHORT term, life easy for me. It was during this period of my life that I began to realize that it isn't ALWAYS that teenagers make decisions in our lives for the short term; I decided I had to be the parent to my parents and show them that it was time for me to go, no matter how difficult and challenging "The World Out There" may seem.