Showing posts with label OI independent living. Show all posts

My friend K recently got her learner's permit! We are all so excited ...and slightly terrified... as she makes the moves towards further independence. Read her account of how she came to this decision and her motivation to pursue this freedom. 
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Why did I get my permit? Why did I take the first real step towards, what is possibly, the most dangerous mode of independence I could take on? I mean, especially for me with the fragility and all! Jeez, can you parents imagine what my parents are going through? Unfortunately for all of you parents, including my own, who would jump at the first chance to delay their precious cargo from getting behind the wheel, are going to literally have to take a backseat, to my future. 

For me driving me was never in the realm of reasonable options until I was 18, when I attended my first OIF Conference. At this conference, I attended a workshop specifically geared toward driving and the accommodations that were already out there ready for our eager use. Albeit, these accommodations are not always the easiest to obtain (as I’m seeing now, 6 years later). I am pleased to say that it is possible, and I have no doubt in my mind that I will drive someday, hopefully soon! All 3 feet and 7 inches of me, along with my 300 lb chair will be behind that wheel, threatening as many lives as those four wheels will allow us. Yikes!

For now, I am the proud holder of a learners permit. This is literally the key to the safe. With this tiny slip of paper, that I received after answering 18 randomly given questions, I now have the power to get behind the wheel of any vehicle, provided there is an over 21 year old passenger who has had their license for a year or more. Oh yeah, and there is the small necessity of there being the proper adaptive equipment installed in the vehicle... so that I can physically manipulate the car and make it safely do what I want. Here lies the problem for many of my physically disabled friends and I which separates us from our able-bodied permit holding peers: 
Take for instance my two younger siblings. Both able-bodied, both came of age and immediately obtained their permits, driving themselves away from the Registry of Motor Vehicles where they took that simple test. They then completed their respective time behind the wheel with a licensed driver in the car, and eventually took and passed their licensure road tests.
In my particular case, I’m going through an agency who will hopefully help me finance the the expensive equipment and modifications that I will need to gain my full driving independence. This also involves being taught to drive while using the specific equipment I’m going to need, which also is going to take time because believe it or not their aren’t that many experts in adapted driving... at least in my state.

But still, why am I going through all this? I ask myself this question all the time. I often think, why drive when you want to live in the city, where you have no problem using public transportation? Also, as much as I don’t like to admit it, I am scared of driving. It's no secret that a simple fender-bender could mean a nice long hospital stay for me.... Despite all of this, there is something bigger that keeps pushing me along: my freedom. I think this is where the motivation towards the ability to drive becomes universal:
Disabled and able-bodied alike know being able to drive to and from somewhere is one of the most freeing things in the world! I have experienced this in limited capacity while using fixed public transportation. Even though there are only so many places I can go via these routes, knowing I have full control over when I arrive and for how long I stay is one of the greatest feelings I have ever known. After a lifetime of living by other peoples schedules though, it is truly invigorating to be able to create my own. Now imagine the open road, that freedom will be just oh so so sweet.

For much of my life you've been like a second shadow: your presence waxing and waning with the rising and setting sun, cheering me on during my brightest days and slinking away during darker moments. Despite this closeness that we've shared over the years, I have not the faintest idea of what you actually look like!
You were there when I learned to dress myself, there when I learned my first transfer from toilet to wheelchair, you fist-pumped when I got my college diploma, and don't think I didn't see your eye rolling smirk when high school was finally over. My doctors told me you were there when I walked with crutches, when I learned to swim, and when I learned to lipread. Mom and dad told me you were there during IEP meetings, every time I pointed to where it hurts, or the times they fretted sleeplessly because you were taking me away from their nest. Some people say that you're what "doing something on your own" looks like. Others will say that you're the feeling of freedom, of acting upon autonomy, and you're the sounds of millions when they scream for the toppling of a dictator.

Although there's a lot about you I don't know, I wanted to take some time to share with you the things I have learned from you. Because while you think you have been able to lead me on with your tough-love mind games, and your unsympathetic spirit - don't think I'm just some mindless puppet of yours. I might be your marionette but we're both tugging on those strings, one snip from either of us and the whole thing becomes a dysfunctional clump of wood.

Independence, do you remember the first time we met? The first time I heard your name? Let me remind you now:
I don't remember if it was second, third, or fourth grade but it was during one of those years. Our teacher had just turned us loose into the hallway, it was snack time and sneakers squeaked against the linoleum hallway floor. It was back in the day when sneakers that lit-up were the "in thing," and I can picture those lights flashing in rapid Morse code: hungry young child! In the hallway I looked around for my classroom aide who seemed to be nowhere in sight. Maybe she had gone to the bathroom, maybe she had gone to get her own snack, I stayed quiet and watched as my friends opened and slammed metal locker doors - the laminated name tags on each one seemed to be succumbing to gravity as the school year went by.
In front of our lockers was a half inch ledge that jutted out about two or three inches. I'm not sure why there was a ledge in front our lockers, but it was there and for that reason I was unable to roll up to my locker and get my lunchbox that my aide had put on the top shelf of my locker. I reached to open my locker and saw that the strap of my yellow and blue Pocahontas lunchbox was hanging down, I leaned forward in my wheelchair and grasped at empty air - only an inch away from the strap. No one else was in the hallway and everyone had gone back into the classroom to swap Doritos and Cheeze-its; not thinking anything of it I went back to my desk and reached for the ruler that sat in my basket of supplies. I took the ruler back out into the hallway, stuck it through the loop of my hanging lunchbox strap and yanked forward - the lunchbox came flying out and I caught the plastic in my hands. I stuck the lunchbox on the footrest between my feet and rolled back in, wondering if mom had remembered to pack me the right flavored juice box this time.
"Sandy! You got your lunchbox by yourself?! You're becoming more independent each day! Next time, you know, you can always ask one of your friends to help too." 

When I first heard your name the skies didn't open with angels singing from the heavens. No, when I first heard your name - on that day - I heard about the latest kid's show on Nickelodeon, and then the bell rang for recess. When I first heard your name it was just another regular day in the life of yours truly, it was just the start of millions of more natural moments with you.

Sometimes you are my goal, and other times you are my motivation. Your ability to shift gears is uncanny as I've watched you morph from learning to charge my wheelchair, to going to doctor's appointments on my own. You taught me to recognize that feeling that means: you want something really badly - so stop making excuses and go for it! During those times I have imagined you as the barking coach on the sidelines, the whistle clenched between lips shrill and piercing as it shrieks: try harder, you can do better. Don't listen to them. Only listen to me! I'm the one that's loudest in your head! 
You haven't been easy to get along with. You've caused pain and heartbreak, but when I close my eyes and I ask myself: do I feel more like a whole person? And when the answer is a resounding yes, no matter the consequences of my actions and the tensions I have caused - I know that I have done the right thing, for myself.
That... more than anything else, Independence, is what you have taught me best: the ability to care for myself. To put myself first. To recognize my own needs. To not shy away from the difference in the way I do some things. To pursue that huge goal of studying away for a semester in college, to the tiniest goal of learning how to shove my sneakers onto leg braces - you have taught me to have stamina for myself, for no other reason than because you tell me I deserve this.

Thank you for giving me only the best.
Independently forever yours,
Sandy

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 

• It's really easy to only think of the progress OI'ers make in terms of fractures: "oh she hasn't had a fracture in 5 months now.." or "he had a rod surgery 6 months ago and is now able to walk for much longer distances!" As in the above story I shared, it's important to note all the intangible things too!
• What I didn't appreciate then that I understand now, I really learned a lot from the decision my parents helped me with in the 8th grade BECAUSE they included my doctor and me! Although my parents were initially against my decision to go, the fact that they heard me and wanted to make the safest decision for me paid off a lot now that I am an adult! I now know about the things I need to consider when I make decisions like this
• No matter how ridiculous and stubborn your child might be in trying to 'make a call' in his or her life, let them! It's the only way I learned what my limitations are and how to problem-solve in 'the real world' without my parents by my side 24/7
• Parents might be losing hair, sleep, and gaining bags under their eyes over the decisions their OI'ers might be making - this is probably normal (although I wouldn't know cuz I don't have kids). The best thing to do, as hard as it probably is, is to be supportive while GENTLY and QUIETLY voicing your concerns. Badgering and screaming "WHAT IF THIS HAPPENS?!" Is probably going to put distance between you and your child for the next 'big' decision
• Though I don't TOTALLY know what I'm getting myself into, the fact that I am willing to take this risk AND look forward to doing it, I think, speaks volumes about how my parents raised me. 

Continued from previous post

"No. No you can't. Absolutely not." 
"Why not?"
"What happens if you get hurt? Who is going to take care of you? What happens if you fall out of your chair and break something? What about your disability benefits? Do you know if they will still work out-of-state?" 
They paced and shuffled around my dorm room. My first mistake was having the conversation in a stuffy cement 6ft by 8ft block. I did what I usually did when they got frantic: Ignored them and looked away, stared out at the window and began counting the seconds till they calmed down.
"This is the best town in allll of America for you to go to college and you want to LEAVE? Are you crazy?! And not to mention you're right by the best hospital in allll of America too! With the best doctor! He knows you best!" Still, I remained silent.
It was like a very informal court case. I had to wait for their side to be done screeching their arguments before I could launch into mine. In my mind though I had all the answers to their questions, not only did I have all the answers but my responses screamed aloud in my head. I wanted to shake them by their shoulders and tell them that I was capable of so much more. That it would be okay. That I was sure, somewhere inside of me, that studying away was the next step for me. I knew their questions would not be about why are you choosing to do a study away program? (In truth, my parents didn't even really understand what my major was about anyway). But instead their questions were focused around do you think you'll be able to survive away?

"You guys, I'm going. I've already got it all planned out. I'm going." I could not have chosen to utter those words at a worse time. They were emptying my laundry hamper into a bag that seven days later would carry fresh clean clothes. Dad was putting boxes of pre-cooked meals in my room-sized refrigerator.
"You can't handle yourself on your own. You just can't. Who is going to do all of this for you?" 'This' is what my parents had been doing for the past 19 years.
Sure, my mom told me about how she gave up her job and career when I came along. And when my family moved to section 8 housing in a Boston suburb it was because we couldn't yet afford an accessible home to live in. I knew all of that stuff but it wasn't until that day that I saw how centered around ME my family was. Specifically, how centered around ME my parents' lives were.
I remember swallowing a very large gulp in my throat that day and at that moment. It made me incredibly sad to realize all of that - of course I was thankful and grateful for them but in that same realization I recognized I had something to prove for myself and them. So there I was wanting to get away, to show them not only was I capable of "..doing all of this.." for me - on my own, but that THEY had their own lives to live too. Their own potential outside of the lives of their children was unfulfilled, I saw it that day as my laundry was folded away into the drawers and food was put into the fridge for me. There are many times when I wonder where the world would be if every child could have had such adamant parents like my own.

The days following didn't get easier until after the long winter break was over. My parents still didn't realize that I was actually intent on leaving until they saw the boxes of things from my dorm my friend M had helped me to move back home. As I carried my bedding and sheets into the house the look on my dad's face was one of stunned sadness and shock. Somehow I knew that they wouldn't realize I could do "this" on my own until I was actually there on my own; knowing that helped me deal with their anxiety and the many arguments that occurred during that holiday season.

That night I was leaving for the bus station my parents finally came around (I mean, really, they had no choice by then). They gave me two large suitcases to pack all my stuff in and sent me on The Ride to South Station (earlier that semester I had saved all my work-study money to buy a one-way bus ticket to D.C.).
"So you're leaving home for the semester eh?" The van driver asked me.
"Yeah, I'm doing this US foreign policy program at a university in D.C. I'm really excited!"
"I remember when I left home for the first time, I had gone to the peace corps for two years and that was overseas..."

Study away/abroad/independence:

• Know that it's possible. But also know that that possibility won't be handed to you, it'll take research, adaptations, and thousands of annoying logistics - but it will work. 
• One part I had left out was that after talking to my parents I even wrote a letter to them explaining, calmly, my reasons for going and why I knew I would be able to handle it. To this day, it is probably the most honest piece of communication I have ever had with my family.
• I always knew I wanted to try to live on my own  WHILE MY PARENTS WERE STILL ALIVE! Though they might be several states away, I knew that if something went awry at least they would still be there to help me. This may be blunt and a creepy thought to think about, but ... think about it!
• Along the same lines of "know that it's possible," also know that others have done it before you. A simple google search of 'disability independent living' will reveal many sites and resources at your finger tips!
• Also, if you are a student at a college/university - chances are there is a Disability Services Office at the ready to make your life easier. I was very fortunate to have an incredibly well connected office at my school and the woman in charge helped me from the start to the end of the my study away experience
• For parents: your child seeking independence is natural, inevitable, and I hope it is a source of pride for you (I am not a parent so I have no clue..). And of course you will be worried (we expect you to be!) but as a child I also want nothing more than to know you always have my back, and that you will trust me to listen to what you are saying and go my own way. 
• For young people: Your parents are totally gonna freak out. We will always be their "fragile babies" and I'm sure we have all heard the horror stories about the time "so-and-so had no clue about O.I..." But now it's not like that! Now it's our responsibility to educate and help others be aware of what O.I. is about, and more importantly, what we as individuals are about! Remember those times our parents talk about and use them for more than just amusing stories around the dinner table. 

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

When I was younger these questions were posed to me a lot: "what is it like to be in a wheelchair?" or "what's it like to be disabled?" Growing up with these questions in mind I would frequently get confused as to what a disability is. Is it a feeling? An identity? A mentality? A diagnosis? All of the above? And how do I incorporate all of those into my daily life? Should I be conscious of being disabled all the time? In other words should I always 'feel' and 'think' disabled?

Needless to say I was and still am one to over think things into a pulp. At the risk of already growing 'silver' hairs in my early 20's, I have done my best to not mull over those questions 24/7. Instead, living those questions and figuring out the answers in the process of life have been far more interesting for me. Still, once in awhile I find myself slipping back into the cycle of self-wonderment. Recently I started thinking about the times when I do not consider myself 'disabled' in an attempt to understand the times when I "am" disabled.
For instance I always begin my day "not disabled." I wake up in bed, look at the ceiling or out the window and stretch. In those sleep-wake seconds before I turn to look at my empty wheelchair parked next to me I do not consider myself 'disabled.' In fact, to be quite honest, I consider myself rather be asleep because I am not a morning person. Then when I reluctantly clamber out of bed and slide into my wheelchair I am still not disabled. I'm just grumpily trying to figure out what crevice my seatbelt has slipped to now and prepare to sloppily push myself towards the bathroom. As I get into the shower and then get dressed I'm not disabled, I'm just trying to throw clothes on my body and get myself out the door. I'm not a make-up person at all. In my blunt opinion whenever I think about putting make-up on myself I think that somewhere in the world a clown is doing the same thing... and to be honest, I live my life to entertain myself, not to entertain others.

Maybe around this point in the morning I first notice that I am 'disabled.' I look at myself in the mirror that is angled down towards me, the reflection of me sitting in my wheelchair looking back at my now 'a-little-more-awake' self. I notice how the bowing of my ribs almost forms a barrel, but then when I think of barrels I think of too much beer and once again for those .09 seconds I am not disabled. I am just a 20-something who likes to party with her friends. And then I know that despite having length to my femurs my lap is somewhat non-existent because they too are bowed  from too many fractures and misshaped collagen. I scrunch up my face in an attempt to make it less triangular but after awhile my face muscles will get tired and things will slip back into their broad forehead and cone pointed chin. My arms were never like airplane wings when I played that game as a kid, it was more like I had the arms of Frosty the Snowman - the crooked branches of an old tree. The lower half of my arms drop down past the bend of my elbow, it's like an upside down shrug. But even still, after grinning at my overly large head in the mirror and puffing up my cheeks to make a monkey-face I don't consider these features of me 'disabled.' They're just me. They are all characteristics that can be categorized as symptoms of the O.I. Like each of the different designs on the gingerbread cookies my friends and I make every year during the holidays, they're distinctive.

After all of this maybe then, I remind myself I am disabled? I head out the door and wait for the van that picks me up, or for someone to lift me into the car and put my wheelchair away. It's probably in the van where I am sitting for sometimes 5 min or more - that I think "just another part of the process." And I watch as the driver puts the useless velcro strap on me, then fiddles with the wheelchair tie-downs, then fiddles some more with the seatbelt (even though I already have a seatbelt). So by the time the entire process is done I feel like I am actually on the way to the insane asylum from all the straps, and not just ... on my way to work, or to cause a ruckus with friends. And sometimes on that van there are old people. And never will you see the miracle 75 year-old totally ripped grandmother on the van - I mean, OLD people. They have walkers and oxygen tanks and admire the speed at which I am able to zoom in and out of the van - and the precision with which I am able to park.
But then after all of that is done and I go about my day: as I wait for the elevator, or the accessible stall, the construction workers to move, look for the curb cut, look for the accessible entrance, hope the car sees me despite being short, raise my wheelchair seat to reach the bank teller - I am not thinking "this is me being disabled." I am only thinking "how do I accomplish what it is I need to get done?"

Of course this mentality is much "smoother" for me now that I am older and do not fracture as much. But even as a child when I did have more casts on more frequently, I didn't think of breaking bones as having a disability, or the times when I needed my wheelchair reclined as 'being disabled.' It was just "how do I continue to go on living?" And now as I'm older when people ask me "what is it like to be disabled?" I want to ask them back, "what is it like for you to live?" I may not know much but I think I'm beginning to find out that the answers are not too different from one another after all.

Continued from previous post

After fractures happen and when the broken limb is all snug in the cast I tend to sleep a lot. This is particularly true right after the new cast is put on - my body is exhausted, relieved, worn out, and it's a self-reliable consolation technique for me. The ability to just close my eyes and drift, even if on the bed next to me a 4 year-old is crying, and on the other side a cast saw is buzzing as a 13 year-old is getting his cast off. For me this is my lull period, and in high school I remember one teacher asking me "when you fracture and get a cast, does it slow you down a bit?" And yes it most certainly does. It slows us down but it doesn't stop us.
Whether I am drifting off or slowing down these are all parts of my healing process. It's a time when I remember, in a very literal sense, who I am and what I have. In doing so and when I wake up in the mornings to pull rubber bands over the plastic bag before my shower, I am realizing that I am different but it is working out, the challenge I am dealing with is going to be okay. But I wasn't always like that.

After this femur fracture I lay in bed unwilling to even move to go to the bathroom. I told my mom that I could hold it for the entire day, but she would insist on helping me get out of bed - shift into my wheelchair and then onto the toilet. I hated the lag, the dependence, and the weight of the physical burden of the fiber glass cast. During my morning routine whether I was brushing my teeth or pulling pants on, I would always be frowning at the broken limb; silently holding a stare down contest with it, and the only thing I knew was that I was determined to win. But as the days went by my cast would be covered with scrawls, signatures, and silly doodles from friends and family. It would get harder for me to be grumpy with it and as I grew older it occurred to me that it made little sense for me to be irritated about the fracture. First off, I knew that I was born with a genetic condition and breaking bones "just happens." Secondly, it also dawned on me that being mad about the cast only made me angrier with myself. It was my leg that broke, my pain that I had to deal with, my healing process that I needed to get through. If I own all of that then why shouldn't I make it better for myself? And so over the years, and after numerous casts, hospital visits, and surgeries I began to slowly learn how to take charge. The learning process is never completed, to this day I still go through patterns of this behavior every now and then. And it will take me 2-3 days to remind myself of what my rehab process is.

"Winning" that staring contest with the cast happened the day I realized that OI is a characteristic of me, not my entire being. It doesn't define who I am, the condition doesn't hold the reins of my life, and it will only run my life as much as I allow it to. The subtleties are tiny, but once they are recognized you can begin to see how such pivotal points can tilt a perspective almost 180 degrees.

"Mom I don't want to go to my piano lesson today."
"Why not? I will help you get in and out of the car, it will be fine."
"I'm tired and I just want to sleep. I just don't want to go."
"You made a commitment to your teacher and to your music lessons. You need to follow through on your plans."
"But I broke my leg! They will understand if I skip just this ONE lesson!"
"No, you are going." 
I remember this conversation over 10 years later because my mother was always big on "keeping your commitments." But more than just another one of her lectures, I am able to appreciate what she was trying to show me:. My commitment to the O.I. ends after fractures are on their mend, and the appropriate accommodations have been made. I am now always committed to living my life first, and the O.I. second. And because most of the rest of the world doesn't have O.I., I will grow to be the stronger person if I am able to "keep up" with them - regardless of whether or not "they will understand if I skip just this ONE..." That is how I am able to continue, and it is how I know the brittle bones will not ever affect my spirit or will.

Fracture Management Suggestions:

• When a fracture has sustained, listen to the child. If s/he is unable to communicate yet, pay attention to body movements and the difference in cries
• Keep calm. Being frantic and making a huge fuss makes it incredibly hard for the injured person to keep themselves calm; being calm allows less muscles to be startled and accidental jostling
• Let the person know when you are going to move anything, what you will be moving, and where. Only move the person when s/he has given you permission
• Allow the injured person to be as involved in stabilizing the fractured limb as possible
• Every person is different, some kids are able to bounce back into a regular routine within hours (and this also depends on the fracture) - others may take a few more days. Rushing the process doesn't help anyone. 
• After fractures have occurred and the person is in a cast, do not over condescend or over-assist. Just help where and when you're needed! Figuring out strategies to be independent when injured is incredibly important. Frequently when I was younger I would attempt to get out of bed on my own, or take showers on my own - completely freaking out my parents but my "childish risks"  are actually incredibly useful to me now as an adult!
• Gently encourage children to return to their "normal" routine and if accommodations or a different approach is needed to complete a task, allow their in-put into the situation. Don't just automatically "fix" or "alter" the situation on your own, you'll be surprised to find how innovative we can be!