Showing posts with label Readin' Writin' 'Rithmetic. Show all posts

We were all sitting in our little wooden chairs, art smocks tied around our waists, busy filling in a large white piece of paper with the colors of our future. We were the sloppy and babbling dreamers hard at work depicting "What I Will Look Like in 50 Years." This was back when we didn't yet realize our dreams had lines around them and that others expected us to color inside of those lines.
It was the kind of assignment where the teacher would hang each child's portrait at his or her desk, and then on Parent's Night our moms and dads would have to try their hardest to know Oh, this is Willie - no doubt about it! It was the kind of activity that would become one of the earliest answers to the oft asked childhood question: "Who and what will you become?"

My first understanding of my future was based off of whatever my parents told me. They liked to tell me about the day I was born, about how they waited for hours for the one specialist "to cross the bridge from Children's Hospital to Brigham and Women's," and about how Dr. Shapiro then gave my parents the diagnosis after looking at an x-ray. In my head I always imagined it like he was a fortune teller waving his hands in front of some crystal ball and when he peered into it he saw, "she won't ever be taller than 3ft or so, she'll use a wheelchair most of the time, she'll have above average intelligence, and when she gets older her bones will fracture less." Then the rest of it was history, it was whatever I dared to dream about and the people around me who I connected with - that was what my future looked like to me. That coupled with many episodes of The Jetson's made me certain we would have flying cars and wheelchairs before I turned 50.

Think back to your earliest memory of what you thought your future would look like.

There were probably some ridiculous sci-fi, fantasy, magical, make-believe components to it along with many attributes of what your life was currently like. Did you draw a picture of your dream wedding with Prince Charming? Did you have flying cars and cities on other planets? Maybe you drew a picture of you with your future family living on Candy Mountain? Chances are that your earliest fantasies of your future was made up of whatever was your present, and the thing you wanted the most - to the extreme and most absurd state.
For me? I didn't want a life where I didn't use a wheelchair. I didn't want a future where I was suddenly able to run. I wasn't interested in a 50 year old version of myself that didn't also have O.I. Those just weren't things that I felt were important to me at that time. I wanted a wheelchair that could fly, that had spikes on its wheels, that could shoot flame throwers from the handle bars at my annoying older brother. I wanted trees that were made out of pizza. I wanted to have super ninja powers like my mutant idols - The Teenage Mutant Ninja Turtles. I wanted to have a library in my future Castle-Home, a library filled with only my favorite books that I would have to approve of first.

In some maelstrom of birthday candles, 100th day of school parties, graduations, report cards, and diorama projects I suddenly have found myself now living that future. Or at least I am beginning to live that future my Kindergarten self tried to squiggle out in crayon. I still wish I had flamethrowers and spikes on my wheelchair, and I still idolize The Teenage Mutant Ninja Turtles, and of course I still want a library in my future home!
But now my future includes... being a young professional, thoughts of owning a home, what about a family (*face cringe*), where do I want to 'settle?' What kinds of organizations do I want to be involved with? What will happen when I get hurt? Who will be there to help me? Where do I want to travel? What personal goals do I want to try for? Does my future involve a care taker? Will I rely on friends and family? Some of this are the usual 20-something anxieties, some of it is very specific to my identity as someone with O.I. or a disability, others of it are dictated by the values I was taught growing up, much of it is some crazy mixture of all of the above.
As I look around my life and the city I live in, I don't see many examples of those who look like me and have executed the life-plans I have in mind. The future is a little scary when we're heading into the unknown, but it's also exciting and exhausting because I don't necessarily know 'what it will look like.'

Let's get back to that assignment I had in Kindergarten. No child sitting around that table cared about what it will look like in the end, it only mattered that they got their day dreams and fantasies onto a piece of paper - as best as they possibly could. We didn't have doubts as to whether or not this would be the right future for us, or whether our families and friends would approve. Maybe I'll try to rekindle a bit of that spirit back as I begin to carry my own future from squiggly Crayola drawings into *gulp* real life!

My parents used to tell me about how when I was an infant they would carry me atop a foam egg crate pad, instead of holding me in their own hands. I guess the dimpled ridges offered just enough support beneath me, and at the same time the foam provided just-soft-enough-padding that prevented sores on my skin. In my head I always picture it like I'm one of those Faberge eggs balanced precariously on top of a velvet cushion. Except, of course, I'm worth a whole lot more... :-P

Those were the days when I could still fit snug against the grooves of an egg crate. Those were the days when despite how terrified my parents were of handling me, their hands were always holding me up beneath the padding. Their fingers never far underneath the layers of casts, cotton stuffing, pads, or ace bandages - their grip that held onto me seemed stronger than gravity itself. Indeed, their pull on me towards them was the first gravity I ever knew. (Isn't that the truth for everyone?) 

Then I got older and a little bit stronger. My parents grew more confident and their knowledge of how to best lift me became second nature to them. I would soon learn how to do my own transfers with and without casts on - most of the time it was against doctor's orders, and all of the time it was through trial and error. Suddenly there came the day when there was no need for that foam egg crate pad anymore. I had outgrown the need for its softness and my parents no longer needed it as a shield. We had all, slowly but surely, become more comfortable with me growing into my own skin and abilities.

Growing out of that egg crate pad wasn't easy though. There were frequently times when I got frustrated because I didn't seem to belong anywhere, couldn't find the groove that I could fit myself into again; at least not in the same care-free, worry-free, judgment-free way that the foam egg crate pad offered me as a baby. Although I never really experienced growing pains, fumbling out of that physical nest certainly had its own internal pains for me - particularly as a teenager. Questions like who am I outside of my disability? How much do my friends judge me for the accommodations I get in school? Can I expect others besides my parents to provide me safety, comfort and support? How do I ask for help in a non-sissy way? Does my tough sarcasm actually make me seem less weak? Oh, the questions filled pages upon pages of journals that ran around in circles in my head or on the side margins of my class notes. They seemed to run on this endless treadmill that I thought would finally stop after I gave up on looking for answers. 

I never did give-up looking for answers though. Eventually I figured out the answers to my questions, and surprisingly many of them I think I knew in my head -- just didn't have the gall to admit it to myself at the time. Most of the time the answers came to me through pure serendipity, on occasions when I wasn't even looking for a solution to anything - I just happened upon them by going through my day-to-day routines and trying things out. Soon these answers came to me enough times that I began to recognize the pattern. It was something like I won't figure out all of these questions right away, but I will figure them out eventually and they don't need to bog my daily life activities down just because I'm uncertain about something. I just have to keep trying and keep stumbling across the right people at the right time, because it seems like that's what everyone else is doing!

At some point that thought process has become my 'egg crate' so to speak. It became my own source of comfort and safety, those are the thoughts that now serve as my gravity to getting myself back to moving forward.

"Sandy did you see what's on the Suggested Items for Your Dorm list?" My mother asked.
"Sheets, laundry hamper, desk lamp, snacks.. the obvious stuff." I mumbled, bored already.
"They also listed a mattress pad. An foam egg crate mattress pad because the dorm mattresses are really hard."
"Oh...so..?" I looked at her dumbly.
"Do you remember when you were a baby.." She began the story again.

For the parents/teachers who are reading this you might be silently groaning in your head and thinking "Sandy! What. Are. You. Doing. Now?!" And for the young people reading this -- don't get too excited because this is not a green light to go on a wild lawless escapade!

Every human being is limited by what his or her body will allow us to do. We have yet to spread our wings and fly, we cannot breathe through gills, and have no internal water-storage system to last us months in a desert. But despite the limitations bound within our flesh and organs, we have clearly found ways to adapt through years of technology and science. This adaption is what I mean when I encourage "rule breaking." It might not be a written rule set in stone that states: "No human being may traverse the galaxies" but for quite sometime this was the assumed boundary we set on ourselves. Then there were many uber geniuses who crunched numbers and built gadgets, and that boundary was soon smashed to smithereens!

So what about for people with more physical limitations than the 'average' human being? Within the population of those with O.I. we have clearly seen the benefits of science and technology, and how for many young children the 'old rules' of O.I. have long since broken. There are kids who will be taller than 3ft, kids who were once never expected to walk are now running, there are children playing baseball and hundreds of other sports! As I had written in a previous entry, the benefits of discovery have been tremendous and as an 'older generation' O.I. I am of course jealous.
(Just because we have a disability doesn't mean we should accept a life of complacency, abiding my social assumptions, or even the expectations we have of our own bodies. If you ask me those are all the ingredients to a very, very, very dull life).
But it's important for us to keep in mind that what led to that first discovery was someone who dared to break the rules. Someone somewhere thought: it should be possible for someone with O.I. to have near-average height. It should be possible for a child with O.I. to run without use of a walker or crutches. It should be possible for someone with O.I. to participate in sports, and to have more durable bones. Someone came up with the idea to break those initial assumptions. Someone asked themselves and their colleagues "Well what if we did this..."

One afternoon in the seventh grade I asked myself that very question while sitting after school in detention. Who knows what I had done this time around, but there I was sitting silently in the classroom... pretending to reflect "very seriously about your behavior." As you might believe sitting silently - and very still - should be something that comes easily for someone with brittle bones, but as life would have it that's one of the most difficult things for me to do! OF COURSE I had no intention of sitting in that classroom for 30 min, never mind "very still and silently." I wanted out and I began thinking of ways for me to get out of detention.
From the corner of my eye I saw my friend A begin to slowly slide down in his seat to the point where he was basically sitting on the floor. The teacher was busy working with another student, some nerdy and diligent 7th grader who came after school for more help understanding molecules. Suffice to say the teacher was not paying attention to the delinquents he was supposed to watching in detention. Within a minute A had crawled to the side of my wheelchair and whispered "ask to go to the bathroom..." Immediately the plan began to take shape, I understood what was going on!
I raised my hand and asked to go to the bathroom, the teacher waved me off so that he could get back to explaining the process of photosynthesis to that diligent 7th grader. I rolled out of the classroom and my friend A crawled next to me, my wheelchair hiding him as we went past the front of the class. Once we were out of the class we fled to the sixth grade wing and went to go visit our teachers from last year... we were free to have a grand ol' time that afternoon, and no one ever was the wiser to our antics.

Okay, so maybe that's not exactly the greatest - most moral - example of 'forward thinking rule breaking' I could have offered from my life. But hey, it was a fun story am I right?

Don't be afraid to break rules because sometimes it's the only way we will ever get anything done. Out of conflict comes not just resolutions but progress.

During elementary school, middle school, and parts of high school I had various classroom aides. For the most part they assisted with recess, P.E. class, navigating crowded hallways, and as I got older helping me lug those two ton textbooks. My classroom aide - regardless of whether they were my absolute favorites or not - came to know me well. They saw a side of me that my parents didn't get to see, that my teachers didn't get to help with, and saw me in a way that my friends did not. In other words there is an attachment between a student and his or her classroom aide, one that at the end of the school year can be difficult to move on from.

I've said it before but I'll say it again: I really lucked out with the quality of classroom aide's I had. Though I had my rough moments where the line between fulfilling needs and providing assistance got blurred - for the most part I didn't have any traumatizing horror experiences. With that said, when it was time for me to move on to another grade I always wondered "will Ms. K still be with me next year?" And you know you've got yourself a real keeper when classmates ask the same question - "will you still be around next year?" or "Will you be helping Sandy again next year too?"

At home my parents tended to worry over me every second of the day, they saw me at my worst and at my best. Among their many other responsibilities as parents, I saw them as the gatekeepers between What You Can Do vs What You Cannot Do. At school, my teachers had the responsibility of showing what exists through their patient explanations of how the world works. My friends were my peers and field-trip buddies on that adventure of understanding. My classroom aides, I saw as the people who stood by to make sure I knew what was possible. They were the folks who let me know that climbing ropes, going camping in the woods, and picking apples at the orchard were all activities that I could do alongside everyone else.
Some classroom aides stood in the background more frequently than others who, like helicopters, flew low and loudly above me during school hours. It depended on my age, the dynamics of the classroom, the grade level I was at, and of course whether or not I had a broken bone -- they were like chameleons that shifted in color and tone depending on the scene in the classroom, and even the student's mood that day.

When all is said and done, this position is by no means an easy job. If you take nothing else from this blog post, leave with this: much respect for all the classroom aide's and other one-on-one special education professionals!!

Every child and his or her aide will likely be a different relationship. Always there will be room for improvement, things that students will wish their aide next year will do the same, and other things that the student will wonder if the aide could just disappear during. As the school year comes to a close and whether your classroom aide will be staying or leaving, the above are some of the things that might be helpful to consider as we move on. Below I have listed a few more tips that I hope will be helpful!

Transitioning from One Aide to the Next:

• It's always helpful to keep a list of awesome things & things that need improvement. For younger kids parents may not realize that when your child is telling you about his/her school day - notice the things they mention about their aide. Jot those down, they come in handy for I.E.P meetings or 504 meetings!
• Sometimes for various budget/career/personal reasons a student's favorite classroom aide won't be transitioning with them to the next grade. This was the case with me when I moved to a whole new school in the 6th grade - going from elementary to middle school. I was incredibly saddened, but what made it easier was incorporating that transition with the natural moving on of everything else. The idea that my aide isn't a part of me but instead a part of the school and the classroom experience I had in elementary school. I was moving to a new school, a new grade, a new experience, new friends, and with that meant a new aide who would work with me. 
• What about terrible experiences with an aide? Probably the student and the student's family is relieved that someone else will become the classroom aide. But that doesn't change the fact that when we move on we should take the time to thank them, to tell them what you enjoyed and what you wish could have been done differently. This isn't just helpful for the student but for the classroom aide as a professional!
• If it's possible or if you think it would be helpful - see if your aide from last year could meet with the classroom aide that will be assigned next year. 
• It may also be helpful for students to meet their aide one or two days before the start of a new school year! Already there needs to be much to adjust to when the bell rings in a new year, it might be an easier transition period if a student already has a familiar adult face in the crowd.   

Everything got weird for me around seventh and eighth grade. My breaks began picking up in pace again, I was confused about my friends - the girls whom I wanted to be friends with vs. the girls whom I felt I should be friends with; also there were boys (and since when are they never weird?), I wasn't sure if I had all the coolest Trapper-Keepers and neon colored pencils, and my collection of Pogs was still something I went home to play with. Oh yeah and umm... my body was being more awkward than it already was. Every day it seemed like I woke up to a body that became a little bit more of a stranger to me. And there I had been thinking but no one knows my body better than me!

Ugh puberty. Even as I write this my face is cringing. Why do our bodies pick the most uncertain time of our life to morph into more certain beings?! There are some things that were just meant to be purposely confusing and never make any sense, like ever.  

Before puberty my body was already strange, but it was a strangeness that I had known since birth. It was a strangeness that I understood and I could point to certain bowed areas or limbs and tell you a story behind each; and every story had a happily ever after ending. During this phase it seemed like every part of my body was beginning in the middle of some random Choose Your Own Adventure book except I never got to choose where it would wind up. Someone else was choosing for me. And every morning I woke up pleading can I just have ONE say in just ONE thing PUHHHLEASE?! Always to no avail.

As strange as this time was for me physically, I did find some odd comfort in the fact that all my friends were going through a similar weirdness. Finally, our bodies had something in common even if it was the most disgusting awkward commonality ever. I could deal. I went to a school system where the unit of 'Our Growing & Changing Bodies' was addressed in science class in the 6th grade. Vocab lists for each unit consisted of words like: fallopian tubes, uterus, urethra...and we were quizzed on the menstrual cycle like kindergartners learning how a chick grows in an egg. My friends and I would giggle in the back of the room; if ever you wanted to see a classroom chock full with invisible Berlin Walls between every boy and girl, just go to any middle school class that has a similar curriculum.

My parents signed the permission slip that allowed me to participate in the class. I come from a culture that just doesn't talk about human sexuality, so you can just forget about that conversation with my parents because it never happened. They sent me off to school probably hoping that all my brimming curiosities would be fulfilled. So I sat there trying to keep up with the worksheets and fill in the blank quizzes, and yet I still felt like I was learning about some species Earthlings had just discovered on Mars. The 'growing & changing' bodies of girls on the worksheets never looked like mine, the books we were given had arrows and labels stemming from the pictures that meant nothing to me. When I tried to over lay those pictures on to my own body it was like trying to navigate through the Bermuda Triangle with a map created in Australia - everything seemed misaligned, backwards, and destined to point me towards some lost vacuum in the sea.

I'm not sure when it was that I finally decided to hell with this, I'm just going to let it happen whatever it is. But at some point I did. It was probably because after awhile I decided I can't keep up with trying to figure out everything that my body is doing. I've never been able to explain every aspect of what's going on, it was like trying to ask my parents why do I have O.I. and no one else in our family? The answer is: because that's the way it is, and that's just how it happened.
After the initial two or three years of awkwardness things settled back again. Sure I had to get to know myself in my own skin again - but when I looked around I realized it's what everyone else was doing too and it seems that's ultimately what puberty is all about.  

Do students with a hearing-loss still use F.M. systems in classes? Or is there an app for that now these days? I am only half-kidding with that remark!

For those who may not be familiar with it, this is essentially how an F.M. system works: There is a transmitter and a receiver. On the receiving end is the student who usually wears a little add-on piece that attaches to the hearing-aid. On the transmitter end is a device that can can resemble a microphone and is either clipped onto the teacher, or is placed near the area where people are talking.
Some people may be wondering, well if you have a hearing-aid isn't that enough? Ultimately what is considered to be 'enough' will depend on the student's hearing-loss. For me it wasn't enough because in a classroom setting there are chairs squeaking against tile floors, there are lights humming, radiators blasting, pencil sharpeners churning, lockers slamming, and of course -- other students making their own thousands of noises! (It's really shocking how much noise one 7 year old can make if you give her a pencil, never mind a classroom of 21 others!) A hearing-aid will pick-up on all of these sounds and it goes into the student's ear; so by the time the teacher speaks, his or her voice may be all but drowned out or muffled at best.

With the added use of an F.M. system the voice(s) that need to be most 'focused' on is then better able to be funneled directly to the student via the transmitter. But of course when you give a child any piece of technology or adaptive equipment... in the eyes of a child/student its uses can transmit much much more than just the voice of a teacher, or that group discussion. Here are a few things to NOT do from my own wonderful life experience:

1. Don't leave it in the bathroom. 
In middle school was the time when I first experienced classroom changes. For each subject we had we would have to go to a different classroom, and during that 4 or 5 min transition girls would gab in the bathroom together. I was, of course, barely responsible enough to remember my own homework so giving me the responsibility of taking the microphone from one teacher to the next was a lot. Often I would absentmindedly leave the microphone on the sink in the girls bathroom and then go off to Social Studies class, then suddenly be terribly embarrassed when I heard a toilet *swoosh, flush*

2. Don't ask your teacher about that private conversation.
A common happening with the F.M. system is that it forgets to be turned off. I can't even begin to tell you how many private conversations I accidentally was 'looped into' because my teacher forgot to turn it off, or take off the microphone. Does she really think Stephen peed his pants? Does he really think that Megan's mother is the most annoying ever? Does the lunch lady really despise watching the classroom? Was the bus driver really smoking on the playground? Avoid repeating these stories if you want to avoid awkward moments... for everyone involved.

3. Don't say "said" when the teacher says "Repeat what I said." 
Unless of course you have a teacher who has any sense of humor! I may have mentioned this before but paying-attention is not my greatest strength.. which of course doesn't really help the whole hard-of-hearing-student bit. Often teachers weren't sure if I had just not heard what they were saying, or maybe the F.M. system was malfunctioning, or maybe ...I was just spacing out again and chatting with my friends. I even had lots of crafty teachers who had caught on to my ability to lipread, so to test the F.M. system functioning they would turn away and whisper quietly into the mic so only I could hear, "Sandy if you hear this and if you're paying attention you can have a gumdrop from my desk.." Then they would turn back to the class and call on me "Sandy, repeat what I just said." And 7 times out of 10 I was probably not paying attention and would guiltily say... "...said?" 

That morning I had told my parents that I didn't even want to go to school.
"They're doing bicycle safety and it's dumb. I can't ride a bike. What's the point?" 
Well, the truth was I could ride a bike just not one that looked like all of my friends' bikes. I'm certain that no ten or eleven year-old still rode their tricycle around the neighborhood, never mind show up with it at school. I was embarrassed even before I got there and wanted nothing to do with the day. My parents recognized what a sticky-and-uncomfortable moment it was for me, I was their daughter who still pleaded to return to class after a fracture had happened!
Their response? "You're going to school. Maybe you can just sit in the library during bicycle safety time." So off I went, the only kid who didn't arrive to school with a helmet and shiny bicycle in hand.

You should know that this was a certain rite-of-passage for fifth graders at the elementary school. Being the oldest we trooped the halls like we owned the place, and scoffed at the "baby playground" that the kindergarten and first graders played on. By the time you became a third grader you began to look forward to that time when you'd finally be able to ride your bike to school; I remember when my older brother went through it and it never crossed my mind to think that I'd get to that day and not be able to go through the ritual as well. As the day went on I grew more sullen and quiet, resentful that I wouldn't be able to participate in this cool older kid thing - that I would probably be relegated to the library, or sit on the orange swing that hung especially for me while my aide pushed.

The bicycle safety lesson was led by the city police department. Officer C showed up and the second he did the class fell into an excited hush; we were still at that age where a shiny badge and uniform had a sort of 'in-awe' effect. He told the class the rules of the lesson, "follow my directions, stay behind your teacher, always have your helmet on.." I sat at my desk looking around at all my friends who sat on the edge of their seat, they just couldn't wait to get outside into that perfect late spring day.

I looked at my aide from across the classroom, and it was then that Officer C walked towards us.
"Sandy, would you like to ride in the cruiser with me? You can sit shotgun!" Eyes wide, I think at that moment my grin was easily the biggest one in the entire class. Officer C didn't need to ask twice, he knew by the look on my face that of course I wanted to ride in the cruiser!
As we waited for my classroom teacher to get everyone else onto their bikes, to make sure that helmets were securely and appropriately buckled into place - I went to the front of the school where his police car was parked. My aide helped me inside the front seat of the car and I won't forget the utter importance I felt. I specifically remember that I didn't turn around, I didn't want to see where the 'bad guys' sit when they're caught; instead I goggled at what looked like hundreds of switches, dials, and buttons that were all, in my mind, magically tied to the goings-on of every corner in the city.
"Okay so your friends are all behind us. You ready to lead? You're going to be giving out the lessons over the microphone. Press this button while you hold the walkie-talkie and whatever you say will come out from the speaker that's on the roof of the car." 

This was a cool moment in various ways. First off it was the first and last time I'd ever be sitting in the front of the police car ... ;-) Secondly the moment was empowering because I was shown possibility. The truth was I didn't even think I'd be able to participate! But it was because of the adults running the show who saw what was possible - they gave me a chance and an opportunity to be engaged in everything else the rest of my class was doing. 
I wish every student - disabled or not - could have the same teachers and adults I was surrounded by growing up. What may have been more than ten years ago, or just some cool joy-ride in a police car actually does have a huge impact on the way that kid grows up to become an all-possibilities embracing adult. 

I won't ever forget how you're supposed to signal a left or right hand turn on your bike. I won't forget how despite not being in a car, you still need to allow pedestrians right of way. Or the fact that you must ride single file unless you are passing someone else. "And you have to wear a helmet all the time when you're riding a bike - at least until you're 16." I could hear my voice echo from on top of the police car,
"Hey is that Sandy?! Hi Sandy!" I could hear my friends recognizing my voice.
"Hi everyone!" I laughed and thought now I'm a real fifth-grader, just like them. 

I am going to tell you a silly story that ended up having a huge impact on the way I think of myself:

We sat in a circle on the gym floor, watching our P.E. teacher dumping out plush foam balls from a mesh net. She was trying to scatter them around and make sure that no side had "more" or "less" ammunition later on. Meanwhile my classmates and I sat wriggling around restlessly, excited to get the game started. It was one of our favorite games: dodge ball.

In elementary school, at that age, kids tend to be very literal with everything that they see. At that point I defined a lot of myself in connection to my wheelchair - my sense of self was everything that I could do in my wheelchair, a few things I could do out of my wheelchair, and the things that I just couldn't do without help. My friends knew that I would never be the 'door holder' for the class that day, and I wouldn't be joining them at recess for a muddy game of soccer later on. Needless to say it was easy for them, and even myself, to get my wheelchair and my identity blurred.

I'm going to take a slight detour from usual blog content today and talk about one of my passions: reading. We all have our escapes and for me it has always been fiction, novels, and characters I wish I could befriend in real life. Growing-up I was a voracious reader and many of those characters I met waaay back in the day I still keep close to me today; they're the ones who first helped me realize everything is possible! Here are a list of my top 5 books for kids:

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.

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 

In middle school everything I did had to be "cool." Everything from the clothes I wore, the friends I had, the pop songs I belted out, and even the eye rolls that I perfected had to be cool. Given that I had all the legal rights and power bequeathed to someone between the ages of 11-13, "wanting nothing to do with something" meant I threw it into the dungeon underneath my bed or banished it to the dark corner of my closet. It was one thing for me to beg my parents to buy me the latest Airwalks and Vans sneakers, but when someone else forces an image on you - well, usually it doesn't go over too well. Especially if you try that on a 13 year-old middle school girl...

I had changed into a t-shirt and black and white Adidas shorts, I laced up my size 10 Nike sneaks and rolled into the gymnasium with the rest of my P.E. class. And that's when it smacked me across my face: My adaptive P.E. teacher was standing next to it, actually he was towering over it. There it stood in all of its plastic, white, blue, and orange glory: a 4ft tall PlaySkool basketball hoop. I looked at it in silence and for a few seconds no one else existed as I tried to comprehend what was going on. This is not cool. This is absolutely the opposite of cool. This is for babies. I am not a baby. I am more than this, so much more than this.

My friends and the rest of my class all trooped over to the other P.E. teacher, all of them sitting in a circle learning the basics of basketball and how to dribble. Kneeling down, my P.E. teacher tossed me a plastic basketball a little larger than a softball and instead of catching it I fled.

As I wheeled around I heard the ball bouncing on the shiny gym floor and that was the last time I saw the thing. I gunned my power wheelchair out of the gym, down the hall, around the corner, and into the nurse's office. I was humiliated, embarrassed, distraught, angry, confused... and so many other things that, like many other 13 year old girls who get upset, could not clearly put into words.

Okay, let's do a reality check. Despite being smaller than my classmates, and having an aide that I regularly (purposely) ditched while going through crowded halls, I was treated exactly the same as everyone else. Yes, I had help with some things but the adaptation or accommodation was (for the most part) seamless. The special needs that I needed were as cohesive as possible with whatever else was going on. I thought that this is how my disability should be treated. It was invisible, and that was what I had come to expect, it was what I wanted for my disability.
So on that day, without warning, the sudden blunt change was a bit too abrupt. To me that Playskool basketball hoop said "everyone sees you are different, you are small, you are weak, you will always be childish, we will always see you as a child..." And to have the hoop off to the side from everyone else and next to my adaptive P.E. teacher only, in my mind, underlined that difference for me.

For the rest of that Phys Ed. unit on 'basketball' I was allowed to spend it in the library. It took quite a bit of back-and-forth "communication" between my guidance counselor, my P.E. teacher, my parents, and my doctor. But even to this day I'm not sure if any of the adults actually recognized what it was that bothered me, I don't actually remember if any of those 'in power' bothered to ask me what it was I hated so much about it. After that day I learned that while not having to deal with others' image of me was a possibility, I would probably need to learn how to manage it better, and do so on my own. It wouldn't be until years later that I would be better at navigating the image I have and the image others assume for me.

You've got to look for the little uni-sex stick figure in the chair to find the golden entrance. Sometimes it's an even better adventure than playing a video game, other times it's like you're playing on the Nintendo Wii: Don't forget to dodge the construction site, avoid breathing in the cigarette smoke, and go backwards down the curb cut! 

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.

"Sandy do you want to tell your teachers some things that would help you hear better?" I think I was in the sixth or seventh grade. My speech therapist that I'd been working with since the first grade had prepped me for this part of the conversation. It was early in the school year and we were gathered around a table going over my IEP plan.


In the beginning my speech therapist and I worked on pronouncing my own name. The "S" at the beginning of "Sandy" was pretty much silent to me until I was about 8 or so. "Hi, my name is Thandy" is how I would introduce myself to others as a kid. We also worked on endings of words that had a "t", "-ed", "-s" or the one I hated most: "-its." She helped me learn how to carry my sentences all the way through when I spoke aloud, reminding me to not drop off at the end, and we worked on my lisp (a word I had trouble pronouncing until well into high school); she taught me about adverbs, and compound words; we practiced lip reading, and ASL. I didn't consider her to be just my speech therapist, she taught me language and how it can be used, how it benefits all of us, and all of its little tricks and secrets. But the most important thing I learned from Mrs. B was how to advocate for myself.

I know that my hearing-loss isn't something that I touch upon much in this blog, but its something that O.I. affects and also, of course, affects my day-to-day life. In school I was usually not only the only one in a wheelchair, but also the only kid with a hearing-impairment (at least that I knew of). I wore hearing-aids and an FM system in school beginning with first grade till the 12th grade, and even today I will OCCASIONALLY wear one hearing-aid. (It depends on my mood, do I want to listen to the ENTIRE world today?) Having a hearing-impairment can negatively influence a student's learning experience in very obvious ways, but just as with any other disability learning to work WITH the impairment is the key to success. I think that my weekly sessions with my speech therapist, and our focus on language.. actually had a lot to do with my fluency and comfort with the English language in general. It's one of those old lessons in practice makes perfect, but in this case it helped that the student loves the subject of English and writing to begin with.
Mrs. B was the rare teacher who was able to seamlessly show her student how learning language will also help you overcome challenges. When we were practicing lip reading she taught me about context clues, and how even though certain words LOOK the same on the lips, the context of phrases will help you decipher what is being said. This helped a lot when I took my college entrance exams and had to fill in missing vocabulary from sentences -- context clues! It was a skill I had been learning since the 3rd grade! Or as we were going over phrases she would tell me about ways to make it easier for me,
"How did you get that phrase so quickly?!" She proclaimed in mock disbelief.
"Because you were facing me, and I was looking at you." This quickly became not just the right answer for her little games, but also the key to my success in the regular classroom as well.

I learned how to address teachers who would talk while writing on the board, their backs facing the classroom. And although I was able to pick-up 80% of what was being said through the FM system, I never felt confident unless I am able to lipread as well. This is true even to this day. I get frustrated when people scream at me from afar, or when friends will whisper things in a movie theater. Even if I DO hear what is being said, I get frustrated because my natural instinct is to say "I can't see you, and if I can't see you then I can't hear you."
Having an FM system also means that I pick-up on ALL the background noise in a classroom. Every squeak of a chair against the floor, every soft rumble of the heater in the background, every hum of the lights in the ceiling, every single side chatter of conversation between students.. the list is endless! Being able to address my peers in a confident and cool manner about lowering their voices, or stop tapping your pencil! Was also an infinitely important tool that Mrs. B armed with.

I'm a firm believer that the more a student is able to advocate for his or her needs in the classroom, the better learner she or he will become. And in many instances this requires a certain level of comfort with the disability or learning difference that the student may have! So in the end, this is all the more reason that our educators and parents learn to form learning communities that foster inclusiveness and acceptance. The easier it is for students to speak-up for themselves, the stronger they becomes as individuals and the better prepared they are for the world OUT THERE!

"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,

If you've been following the blog for some time you may remember that I have had various "helper persons" from pre-school till 9th grade. At the start of 9th grade I got all teenager-y and stubbornly wrote off my aide and won the case for my independence; from that point on I was deemed capable / responsible enough for my own well-being and have not had an aide in the classroom since.

Fifth Grade, I think?

When I think of the aides I had in elementary school one thing immediately comes to mind: they were all involved in the education of the entire classroom. Though much of their time was spent one-on-one with me, I remember my aide in third grade taught math lessons and my aide in the fifth grade would often read aloud to the entire class. I didn't consciously realize it then but I appreciated and even liked this aspect of their job quite a bit. In many ways, I believe having an aide who was accessible to and involved in every student's education made my integration into the mainstream classroom a lot easier. In elementary school I was rarely without friends and more importantly was never ashamed of needing the extra help; it also helped my friends and other classmates better understand what I was all about in a more seamless way.
In middle school I had several aides throughout the three years. I'm not totally sure what the school was thinking but when I was in the 8th grade my aide was a man. Already that fact alone made it difficult for me, as an awkward 13 year old girl, to connect with him. Not only was he not involved in the learning that went on for each student, but he was also a one-on-one aide for a student in my year who had a learning disability. From what I remember though, during the IEP meeting at the end of fifth grade (as my parents and teachers met before my transition to middle school), it was decided that my aide would help me with things like going from class to class, getting heavy binders and books out of my back pack, fire drills, and in the case that I had a fracture would help me take notes. Since I was now an 'older kid' the focus of my aide was a lot less on the social aspects of my school day and more on the academic learning aspects - no doubt my parents had a lot to do with this decision.
But in all honesty I vividly remember how much I was annoyed by my aide in the 8th grade. I found him to be utterly useless, boring, and more or less wanted nothing to do with him. In fact I remember how my friends and I would race into the elevator before he got there, quickly slam the door close button and giggle hysterically as we watched him try to chase after us, struggling to get through the messy crowd of pre-teen back packs. Yep I was that dreaded pre-teen girl every adult loathes, I'm quite sure that I was that devious 8th grade girl. Another time, during shop class, my friend and I decided to mess around with some horribly boring sounding book my aide was reading (he had left it unattended on top of a desk). Not only did we think it a good idea to turn the book to a random page so he would lose his place, but we also decided to draw a happy face on one of the pages with super glue. I told you, devious. 


Throughout my experience with having an aide I was fortunate that most of my aides were not like the one I had in 8th grade. Their personalities ranged from being very quiet to the ones who would joke around with me, or to the ones who just shrugged in exasperation every time I zoomed down the halls with a friend standing on the back of my wheelchair. None of my aides were ever flat-out mean or unaccommodating. Many of them quickly realized that I was going to do as much as I could, regardless of whether or not it was a potentially terrible and injury-prone idea. For instance, climbing ropes in gym class. Or trying the monkey bars during recess. I think one year we tied the rope to my wheelchair during tug-of-war and I was finally allowed to participate in the school-wide competition. My aides let me jump and skip in my walker even though I was really only supposed to be walking. They would listen to my complaints about having to wear my long leg braces all day, and every now and then I was allowed to take them off. My aides respected the times I wanted to try something, and although they probably weren't always sure whether or not I could handle it - they encouraged my curiosity and development by letting me do it. Of course this meant that they were always right there with me standing by, and most times it meant that they were physically holding on to me for dear life!

So with all of that said I have compiled a list of characteristics that I would include in my ideal classroom aide:

• Have a sense of humor that's like mine! 
• Be involved in what's going on in the classroom
• Have a fun personality but also know when an authority figure is needed. Secretly I do expect my classroom aide to keep me safe when one of my seemingly "good ideas" is not so good.
• Back-off when friends are around
• Allow friends to help me as appropriate. The truth is that as young kids grow-up they will increasingly realize that they will be the ones who need to ask for help, and many times that person may be their peer or colleague. Starting this early-on is only planning for the long-term!
• When I am hesitating about doing something that involves physical activity, help talk me through the decision process
• Trust me enough to have some time alone; my aide shouldn't be a literal shadow!
• Respect my curiosity
• Respect and help me during uncomfortable situations. No kid willingly wants to admit in front of his or her friends that they need help going to the bathroom or getting changed for gym class
• After a certain age, let me tell you when I need help
• Help me explain my disability to my friends in an appropriate manner and when the time is right
• Realize that if I want to do something that my aide usually does, this is not a sign of my trying to offend you but instead I am just trying to learn. Help me realize what it is I need help with, and what I can do with assistance
• Never assume that I just can't do it. Allow me to take the first steps in trying and then assist me as needed

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.

Please submit a one-page personal statement with your application.
How would you describe yourself as a human being? 
You have just completed your 300-page autobiography, please submit page 227.
Tell us about a challenge you have faced in your life and how you have overcome it. 

'Make yourself stand out!'
'Show the Admissions Officers something they can't otherwise get from the rest of your application!'
'Show them what makes you, you!'
'Show them your drive and where your motivation comes from!'

College Application Season.

In my opinion college applications is the intersection of an uncertain future and 17 or 18 years of a person's past. It's the cross-roads of a student's identity: who they were, who they are, and who they wish to become. And then somehow where all of that meets-up needs to be elegantly, coherently, and intelligently expressed on paper -- on about a thousand forms, typed up into 500-character essays, verbally expressed in interviews.... Needless to say that similarly to my other friends, as a senior in high school, I was incredibly overwhelmed by this entire process.
Did I want to put down on a million forms that I was a student with a physical disability? Did I want that to be the focus of all of my essays? Would it hurt my chances of getting admitted if I revealed I had a strange and injury-prone condition? Would schools hesitate to accept me because they feared liability? (Oh sure, I know what THEY say and what the laws say...but it's what they DON'T say...) Was I somehow 'copping out' because I didn't have to think too hard to "make myself stand out?" These and other questions careened through my head day in and day out. It seemed like everyday my parents and guidance counselor gave me a new pro or con to add to the already growing list of reasons:

• First off - whether I wanted to admit it or not as a 17 year-old, my disability was a part of my identity. Even if it was a part of my identity I wanted and tried so hard to deny at the time. My strategy for 'attacking' the stack of college essays was to start with the broader essay questions first, the generic ones that were not about "the meaning of silence" or did not ask me to "share your thoughts on the generational gap.." And once I started on the more general essay questions about myself I began to see how my disability influenced the way I was raised, my perception of the world, my ability to self-motivate, and my stamina. After I came to this conclusion it occurred to me that leaving out this part of me (even if I didn't fully understand it yet..) would not be giving college admissions an honest and full representation of who I was as a student. 

• Second - I understood that I did not need to feel 'guilty' for being able to write about something I was born with. It is something every college applicant does, or hopefully, realizes that s/he can do. At the risk of sounding like a broken record: we each have some 'obvious' trait (that we were born with or inherited) or experience that has somehow made its mark on us. The point isn't so much WHAT that 'thing' is so much as it is HOW you write about it and what it says about you. How can you connect this to your future interests? How has it affected your ability to learn or take on new challenges? In what ways has this changed your perception? How will this part of you add to a college community? 

• Third - Continuing off of this second point, it also means that I realized writing about my disability does NOT have to be the sole focus of the essay. College Admissions officers are not interested in hearing about every medication you've ever needed to take, or all the different lab tests you've undergone, and every operation you've been through. It takes a lot of patience and honest-self-talk to plumb through what you want an admissions officer to learn from what you are sharing. It helps to choose one aspect of yourself and finding 2-3 areas of your future interests or your education to connect it to. Don't try to over-do it because you don't want it to sound forced or 'fake.'

• Fourth - As odd and cliche as it may sound, this is your chance to turn something that may otherwise seem 'negative' and show how you have endured and persevered. This might be an 'old and re-used' route by many with a disability but you can't ever deny the value that there is in this message! So long as the essay doesn't completely 'milk' the situation and is well-balanced with other aspects of the student, this route can work when done well! 

The choice to share your disability with others is always up to you! So in the end you (and the help of your family, teachers, guidance counselors) should make the decision. I understand that not everyone is comfortable doing so or feels self-conscious about revealing something that might otherwise make them feel vulnerable. Whichever route you choose be sure that it's something you believe fully represents you and what you bring to the table! Other things to help the decision process: research what the school has in terms of disability resources, see if you can find out what accommodations would be available, and if it helps you can even go visit the school before writing the essay for them.