Showing posts with label OI student. Show all posts

A Field Trip & A Side Trip

By | Published Tuesday, November 8, 2011

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.



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Fire Drills & the Other Secrets I Always Knew

By | Published Monday, October 24, 2011

"Just so everyone knows today we're having a fire drill. Everyone needs to exit the office, we will all meet at the end of the street and do a head-count there" announced a co-worker. She came over to my desk, crouched down and whispered to me,

"Sandy, the fire department has instructed me to let you know that you should just wait by the entrance - at the top of the staircase in the front lobby. Don't use the elevator." 


Fire drills. From Kindergarten till the 12th grade I always knew when they'd happen at least an hour in advance. The protocols varied from exiting the wheelchair-accessible entrance of the school, waiting for the vice principal to carry me down the stairs, to meeting at the nurse's office and exiting the school with her. Regardless of which route I took I was always safe, properly notified and always knew in advance.

"Alright, pop quiz today!" My sixth grade math teacher announced. The class groaned.  
"It might get interrupted because Sandy says we're going to have a fire drill!" Hollered one of my friends from the back of the room. I glared at him, it wasn't something he was supposed to go ahead and share with everyone else. I thought that was un-stated-11-year-old-best-friend policy. From across the classroom my aide looked at me and shook her head disapprovingly, I just shrugged my shoulders. 
But it was true! That morning before I headed to my homeroom the vice principal Mr. V had folded his seemingly 100ft body down to my level and whispered in my ear, "we're going to have a fire drill today." For the rest of the day I was antsy, ready to yank out my hearing-aids at the first blast of the alarm, excited to interrupt the mundane middle school day with at least 10 minutes of time outside to socialize with my friends and the rest of my grade. 
My middle school had multiple floors and elevator access to each one. Administrators had access to my schedule and a part of the fire drill protocol included knowing where I was at that exact moment of the day. If I was on the first floor I would exit with the rest of my class, if I were on any of the other floors my job was to park my wheelchair next to the stairwell and wait for Mr. V. He would come running up, scoop me up with one arm under my legs and the other around my back, and I would then be placed into a manual wheelchair that the school stored in the nurse's office. All of these transitions were always practiced at the start of the school year. The timing, precision, and technique of carrying me (with and without a cast) were run through; usually my physical therapist or my parents were there to supervise the transitions, each year running through the routine to maximize safety and efficiency. 

In high school I didn't have an aide and had a walkie-talkie instead. The walkie-talkie meant that I was literally tuned into many other goings-on around the school; many things that I am not sure I was really supposed to know about, and probably would get into some trouble for if I wrote about them here. Sorry! But each morning I would pick-up my side of the walkie-talkie from the nurse's office, and of course it always helped that the nurse was married to the Captain of the town fire department. She would inform me of the time we would expect to have the drill, and I would let her know what class I had and where it was in the school (though they also had a copy of my schedule as well). Now that I was older though I wouldn't tell my friends about the drill unless we had a test in that class, or if we were expected to present projects in front of the class. In high school, it just wasn't really all that "cool" to be in-the-know of whether or not there was going to be a drill. No teenager likes to wait in the freezing cold at 7:40AM (because our first class began at 7:33AM, god I SO don't miss those days!), but if it was particularly cold I would let my friends know that maybe they should keep their jackets on for a bit... 
One year, I had AP US History and the class was on the second floor in the library wing of the school. This part of the school is tucked in the back and nowhere near the front entrance, it was also nowhere near the nurse's office. To make matters worse I had also forgotten to pick-up my walkie-talkie that morning. My teacher for this class, an engaging and brilliant man in the matters of US History - but not so much in the matters of student-emergencies:

"Oh no, Sandy!! What should I do? Should I carry you down the stairs? You can't use the elevator right?" Mr. B proclaimed. I was parked at the top of the stair case at the library - totally cool, calm and collected. But the second the alarm had gone off I had cursed myself for forgetting to pick-up the walkie-talkie.
"It's fine. I'll be fine Mr. B. It's okay, you can go down with the rest of the class --" by then the rest of the class had already trooped down stairs and was outside. I felt a little guilty that I was the only one in the library with my teacher. 
"Are you sure? Maybe I should wait with you. Who are we waiting for exactly?" He asked.
"The nurse. She knows where I am because she has my schedule. She'll be coming soon, I'm sure." I responded as calmly as possible. It occurred to me that Mr. B was one of those teachers who fed off of his students' energy and nervousness, particularly in unfamiliar territory. 
"Okay, well, I'm going to phone down to the main office just to be sure.." Mr. B called down and was reassured that the nurse was indeed on her way, that this was not in fact a real fire, and he could leave to join the rest of the 18 other students outside. 
Soon enough the nurse did come up the staircase, chastised me for not picking up the walkie-talkie and then sent me back inside the still-empty classroom to read. 


All in all my experiences with fire drills in the world of k-12 were relatively calm and no-fuss. The protocol for drill procedures were always practiced and always recorded somewhere in my files (IEP or 504 plan). I was never worried about school officials dropping me or any other dangers. It seemed to me that because teachers and administrators always included me in the development of these routines I was always okay with them. In high school my access to the walkie-talkie tuned me into other emergencies like someone's dumb idea of a bomb scare, who had put ex-lax in a history teacher's water bottle, why classrooms were suddenly re-located. 
When I went to college my fire drill procedures were flexed out a bit; since I could be anywhere on campus, in any of the hundreds of elevators available to me, or I could NOT be anywhere (what if I decided to skip lecture the day there was a drill??)... how did the authorities keep track of me? Easy. I had a walkie-talkie that was connected with campus security. Not only did I know when there would be a fire drill that day, but I also knew if someone was getting arrested, if someone was going to the hospital, or if a student had locked herself out .. again. And to be honest, I got so comfortable that I rarely ever carried the walkie-talkie with me - most of the time it was just left sitting in my dorm room, on top of a bookshelf in its charging dock. 

But it's always good to be prepared, right? 

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Wrap-Up

By | Published Friday, October 21, 2011

Can't believe we're quickly approaching the end of October. Wowzers! I don't mind it though, soon there is an excuse to dress-up and eat candy  =)


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Lessons in Inclusion, Compassion, & Understanding

By | Published Wednesday, October 12, 2011


Most of the kids in my class were hobbling on crutches, trying to run while pushing a walker in front of them, others were in wheelchairs, and there I was in the center of it all - playing forward position on the soccer field in my walker and leg braces.

It was "Understanding Me" week. In the public school system I grew up in this was the week where fourth and fifth graders learned about people with varying abilities via hands-on learning, guest speakers, and presentations from yours truly. Growing up I never presented to classes other than my own, so it wasn't until I was 9 or 10 years old that I began answering questions my peers had about my life with O.I.  From what I recall my friends and classmates never made a big fuss about my disability or my wheelchair; if anything they liked my wheelchair because around that time I had figured out how to let people jump on the back of my power wheelchair - instantly allowing me to become one of the most popular kids in class.
But because they had also grown up with me since Kindergarten they knew, by then, what to expect from me. My friends recognized that sometimes I would need help reaching something, or opening a door. Other times I would have a cast on and that was an excuse to draw all over it in class, or write messages to each other on the fiber glass. Classmates knew that I loved to read and enjoyed playing with stuffed animals of all kinds. On the playground it usually meant that I would be swinging on my special bright orange swing, or as I grew older it meant that I would be racing around the field with some boy standing on the back. My participation and inclusion in the mainstream public school system, in my opinion and from my vague memories, was that it was seamless. I did everything that I possibly could, but still received the services I required: physical therapy and speech therapy (for my hearing-loss). But even when I was pulled out of class, I was usually allowed to bring a friend along to these 30min sessions - we would play games, they would learn how I lipread, learn how to finger spell, or do exercises on the floor mat with me.

So while my friends saw how I lived my life with them, they had no idea what my life was like when the school day ended. And very few knew what my life was like at home. This was the part of the "Understanding Me" week that I enjoyed sharing with my classmates, that other part of my life. Things like how I moved around at home (at that time mostly by crawling around), whether or not my brothers or anyone else in my family had O.I., how many fractures I have had, or what my first broken bone was. I remember talking about how my parents still had to carry me around "like a baby," that I would never grow to be taller than 3ft., why I needed to wear leg braces, and when my it was that my mother found out "something was wrong." Thrown in with all of the 'technicalities' of my disability there were questions about what I did for fun at home, what I liked to do when I was recuperating from an operation, what my favorite color for a cast is, how come I don't like wearing my hearing-aids, do my brothers tease me all the time, and what does it mean to have metal in your bones? The faces of my classmates were always rapt with attention and respect, they listened and from my memory seemed genuinely interested because I knew that they cared. They cared about what I had to say as a friend, and then they cared because I was sharing something slightly different about my life from their own - and while none of us could have described it at that age, we all knew that that difference was something special and not something everyone got to experience or understand.

It was quite some time ago but from what I remember I wasn't ever "prepped" before I presented. Teachers didn't tell me "okay so this is what you should talk about..." I just.. talked. I answered questions from my classmates as honestly as any 9 or 10 year old knew, and I think it was this factor that made the "Understanding Me" week so successful. On the one hand my friends and classmates learned how people/kids with disabilities experienced their whole life, and all of us came to understand that there is no separation between the 'disability parts' and the 'other parts' of the life that I along with many others in our society live. These lessons and parts of the school curriculum teach every child to respect each other's differences, and allows students to be inclusive and understand how to work/play/learn with those differences -- but also at the most basic level, every human being should be given the opportunity to experience empathy and compassion towards one another.

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Teenage (disabled) Dirtbag

By | Published Monday, September 26, 2011

I remember in middle and high school I always wished the world would stop spinning for just a second so that I could hop off and catch my breath. I wanted a break from the awkwardness, from the drama, the emotions, the pressure, the expectations, the anger, and especially from whatever the hell it was my body was (or was not) doing. 
In high school I tried hard to blend in but I also wanted to maintain and find some part of my identity that wasn't so apparent...something other than my very visually obvious disability. The weird, awkward, physically different, deformed, or genetic mutant isn't exactly the kind of 'unique' identity that is easy for anyone to embrace, never mind a teenager in the midst of an already changing body and emotional cooker. Needless to say I did everything in my power to ignore all of that 'stuff.' I think that these thoughts and their implications floated through my brain but I never really took the time to process them as a teenager, I don't think I even knew how or what to do with the thoughts I had in my head. They were just there and I quietly stored them all away somewhere, secretly wishing there was an adult who would show me how this 'stuff' all works -- but of course what teenager would willingly and openly admit to that?! As the only one in my family with O.I. and since I was the only physically disabled/wheelchair-user in school -- I really didn't have anyone to talk to about this 'stuff.' I never went to any camps that are offered today, and the only time I ever saw someone else with O.I. was on the off chance I awkwardly eyed someone with it in the hospital waiting room. 



My hope for this post is that maybe some other high schooler with (or without) O.I. might find this useful, maybe that young person will not dread another day of school, or maybe she or he will not be afraid of themselves anymore. None of these things will happen over night (no matter how carefully you read my advice!!) it will take days, months, even years of work within yourself. But I promise you, it can get better. But there's work and I'm sorry to say that the world isn't going to be handed to you, it won't always be ready and waiting to accommodate you every step of the way. 
1. Give other people a chance. 
Maybe most of your other classmates at school don't have a disability or have no idea what O.I. is. But that shouldn't matter and in my opinion I think it's unfair for you to expect them to know how to treat you or what not to do. If you don't want them to assume that you are stupid, incapable of learning, or unsociable -- then don't assume that everyone will be cruel, judgmental, and ignorant. Sometimes it might fall on you to take the initiative or to be the bigger person and go out of your way to be the friendly one first, but 9 times out of 10 (in my experience) being nice pays off! This also means to give other people a chance to HELP YOU. I have never been good at this but I am learning! Letting others know what you need assistance with encourages understanding, compassion, and teaches people how to treat others with disabilities. 

2. It's only a big deal if you make it one. 
This was one of my 'defensive' mechanisms for quite sometime and it probably still is. Until I began this blog I never made O.I. a large part of my life, I rarely even brought it up and just more or less pretended it didn't exist. Now, I'm NOT saying that you SHOULD pretend it doesn't exist -- but what I am saying is that the way you carry yourself, talk with others, the smile on your face, and your overall attitude has a lot to do with whether or not 'the outside world' will find you approachable. This can be difficult because if you're stuck in a long leg cast for half the year, it's a bit logistically hard to "pretend OI doesn't exist" or not make your disability a big deal. But even if on the outside it may appear that you are struggling - your personality, mental state, and your attitude can speak volumes and overshadow everything else. I know that this may sound like a phony magic trick but it's not!! Being able to turn an unfortunate event into a joke or making light of a situation are ways that you can level the playing ground for others and show people that if it's not something that bothers you, then by all means it should not bother them. 

3. Do what makes you comfortable.
Trust me, everyone else is just as awkward and uncomfortable as you are - it's just all experienced in a different way. This doesn't mean that you should dig yourself deeper into your comfort zone (otherwise you wouldn't be learning or developing yourself!), instead it's important to try new things and put yourself out there; however, do so within the boundaries that YOU know you are comfortable with. 

4. Talk it out.
In high school I had one or two teachers who I was able to be close with. Although no one else in school had O.I. or a physical disability, it was apparent to me that I had to find someway to get the thoughts that drifted in and out of my head 'out there.' I found that I didn't know how to talk to my friends about it, I was probably too afraid that they wouldn't understand or would just flat-out laugh at me. So instead I befriended my favorite teachers, and although I was never sure that they felt that they could give me 'proper' guidance -- I learned a lot about myself! Being able to verbalize what I felt or was going through helped me realize what the problems were or the issues that I was struggling with better; at the very least, it helped that my struggles were not just all tangled up inside my head and in my chest. Somewhere in school - whether it's your favorite teacher, guidance counselor, your aide, etc. I believe that there is always an adult who is willing to listen and pay attention to you, even if they can't give you the answers that you so badly want. 



I'm just a teenage dirtbag baby like you. 

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Thriving - in college & beyond

By | Published Thursday, July 21, 2011




Dear Readers,
As some of you know I have been treated at Children's Hospital, Boston since birth. Having grown up not too far from where it is located I believe that beyond the medicine the organization has had a huge impact on my development into an adult. So when I was given the opportunity to share how Children's helped me successfully transition into my first college dorm - I readily agreed!! It is my hope that this entry shows other kids and patients of Children's that not only is a college education attainable, but so is life-long independence despite complex day-to-day challenges we may face. 

You can find the entry HERE - at Thriving, the hospital's award-winning pediatric blog. Enjoy and thank you again for your continued encouragement & readership. 

- Sandy 

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