Showing posts with label disabled student. Show all posts

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.

"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!

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  =)

• Monday: Many of you have probably gone through something similar - The Fracture Timeline.

• Tuesday: As a wheelchair user there are just a few things about NON-wheelchair users that annoy me.

• Wednesday: Though I was completely tired from classes, I'm glad I took the time to listen! 

• Thursday: Having had an aide for most of my educational experience, I share my IDEAL aide here.

• Fracture Free Friday: What would you tell new parents of babies with O.I.? 

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.

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     

This week has been busy! Let's see what we've got eh?

• Monday: We've all heard about times when handicap placards have been unlawfully used & I shared a time when I was allowing this to happen in my own family. 

• Tuesday: This was the first post of my "Going to School" series and it focuses on parents of K-5 children. 

• Wednesday: In the second post of the "Going to School" series I am addressing all the young students themselves! I wrote a silly poem that I hope helps parents and young children discuss some of the worries they have around the first day of school

• Thursday: Children's Hospital Boston is a place where I owe so much of my growth and development to! When I was asked to share my experiences of transitioning into my first college dorm with other patients of Children's I jumped at the opportunity! 

• Friday: I've been getting several questions about why I write and specifically why I started the blog. Check it out over at Unbreakable Journey for today's Fracture Free Friday post & as always, enjoy your Friday!

A Small Note for the Big Adults: Knowing that my intended audience were elementary school aged children put a lot of pressure on me for this entry! After a lot of restless thinking I thought back to the authors I found comfort in around that age (Roald Dahl, Dr. Seuss, and Shel Silverstein) and decided a silly poem would be perfect. I hope this poem helps parents & kids discuss concerns they have with the first day of school, but in the end know that it's no way to live life to be constantly fretting. So please, if you could share this with the young O.I'er child in your life that would be wonderful, thank you!!
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