Showing posts with label parents of OI children. 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.

There is lots of medical literature out there that talks about how there are types of O.I. that experience a decrease in fractures at different times. And then there is information about hearing-loss that becomes more evident for people with O.I. at different stages. There is, I'm sure, also stuff about what happens when people with O.I. get older... things that I have clearly not bothered my head with. Yet.

I have been living that difference for at least the past 7-8 years. I haven't had a major fracture in quite some time (something that meant being in a cast for more than a month), and every time I have an x-ray of my chest/spine things are always "stable."My pulmonary tests don't waver far from the year before. My audiology tests reveal the same array of X's and O's on the audiogram. I am at that point of my O.I. where things are stable, and thank goodness for that!

When my friends ask me about fractures it can be difficult to explain to them what it's like. Particularly friends I met post-high school... they did not grow-up along side me, during the years when every two or three months I was in a cast. It's almost, in a strange way, like my friends post-high school are getting to know a different Sandy! Someone who is more willing to take risks, to go out, to party, to climb stairs to apartments, to trek through a blizzard, to do everything they do... because I am "stable" now. It is almost like having a totally different condition in a shocking way! I have found that there are things I could not possibly have been able to do as a twelve year-old without breaking my femur, that as a mid-twenty something I no longer think twice about. My friends post-high school don't come to visit me on inpatient floors, we do not spend our times together playing with TheraPutty, or seeing how long the other can stay balanced on the exercise ball.

It is a bit out of my league to explain the science behind this but I can offer some other insights. First is the most obvious: I am older. The liability for me to fracture a bone might not have changed, and I might still be just as fragile... but I certainly know more about my world and my body! I no longer have the same curiosity as my toddler or middle school self about what I can and cannot do. The temptation to try jumping into the bouncy-castle isn't as appealing when I know what might result. Secondly is that I have a better sense of the limits of what my body can and cannot handle. Those hundreds of fractures weren't just for the sake of archiving myself in hospital records! But each one taught me something about how much is too much, what it feels like right before a bone is about to break. And when that moment so much as pokes a finger at me I am quick to drop everything, to cease and desist. Thirdly, I am able to plan. It doesn't matter how much a classroom teacher, aide, physical therapist, parents may think to plan in advance for an incident where I might get hurt. Their planning will always miss some detail that only I will see, simply because it's my body, and my perspective. Being able to tell my friends "fine I'll go to the party, but someone needs to remain sober to carry me back down the three flights of steep stairs.." Or "okay we can go to Hong Kong and Macau but let's avoid the cobble stone paths if possible."

Things are different now and this is one of those times when the difference has been awesome. It makes me want to do as much as possible, get as much done as I can, cross off as many 'bucket-list' things as I am able to.. because I don't know when the next time things will be different again.

There is a saying about how the bond between parent and child is strong, unbreakable, the closest. While my parents have no idea this blog exists, and talking about "what it feels like to be the only one.." wasn't exactly dinner table conversation (or any kind of conversation ever) - I believe that bond is true for me. This reflects not just the wholly dynamic and complex relationship between my parents and I, but goes to show that the differences in my genes isn't enough to get in the way of anything.

This doesn't mean that there were not some rough moments from my perspective as the child of able-bodied parents. There were definitely incidents that I felt isolated, times that when I look back are cringe-worthy and likeohmygawd so awkward.

I remember days of trying to clack-clack around in my mom's high heels in my walker. The plastic of my leg braces were wedged into the very tops of those points, where my mom's toes would come together snugly my toes remained rigid. The sides of the brace's plastic foot piece jutted out against the sides of her shoes, it was like my feet were rectangular blocks. It wasn't just that when I wore them the back of her heels still had room to easily fit a beanie baby or two, or that I wobbled precariously to the point where I just slid along inch by inch. My mom didn't have the experience of trying to look lady-like while wearing braces. And no matter how many reassuring words she could offer just didn't fill in that gap - it wasn't something that I recognized at that point, but it is something that I realize now.

Then there were those times when I would be plopped into the carseat to go run an errand with them: the bank to deposit a check, to the grocery store to grab that forgotten item, to the library to drop off books for return - quick errands that lasted no more than ten minutes. Instead of taking me out of the carseat, getting the wheelchair out.. I would remain in the carseat. "Read your book, I'll be out very quickly." And I don't remember if it was ever told to me directly, or if I just mistakenly overheard one of my parents saying: "it's okay if we leave Sandy alone somewhere for a few minutes, no one is going to kidnap a child who uses a wheelchair.. too much trouble." I didn't ask why or how come. To me it all made sense, and there was definitely a part of me that was glad for this logic! How come someone would potentially kidnap my younger brother and not me? How come not everyone knows how to fold and unfold a wheelchair? How come I would be too much trouble for a kidnapper? None of these questions, in my mind, really needed to be asked. I just knew the answers from the way my parents acted.

It took multiple instances of when I would be sent to lunch detention, and when my middle school guidance counselor would call home to say something like: "Sandy keeps getting away from her aide..." It wasn't until I simply ignored my aide for a good two months that my parents realized that unlike my older brother I was not getting teased, and I didn't feel like a 'loser,' and I wasn't embarrassed because I was a dork or a "teacher's pet." My parents went through their own days of classroom teasing but they couldn't tell me to stand up to my bully, were unable to tell me "go talk to the teacher.." because they had never experienced the awkwardness involved between a thirteen year-old girl and an aide breathing down her neck. The larger issue here is my parents weren't naturally able to help me figure out how much help is too much, and how to ask adults I "depended" on for space and boundaries. It was decided through a series of IEP meetings and meetings about "responsibility" in my guidance counselor's office that sorted everything out.

There are lots of other times that I can recall as well. The thing is that even though my parents were not able to give me first-person insight on "what it's like..." that is often not what's necessarily important, or what I needed most in those instances. What I needed most (and have always needed) is to know that my parents were always there to guide me, to help, to support, to explore options, and to just try to understand.

For many of us, the total time from when a fracture happens to when we register it in our minds that we broke a bone (yet again) - happens within the same time frame it takes for someone's eyelid to go from top to bottom in a blink. Sometimes it's while we're holding our arm or our leg as we wait to go to the orthopedic's office that we replay the events in our mind. Did I see the sneaker my wheel hit before I tumbled face forward from my wheelchair? Did I see when my younger brother let go of his crib and fell on to me? Did I realize that my turn was far too sharp in my tricycle before I toppled over? 

And it's so easy to respond to each of those questions with a guilt-tripping If only I were more careful... If only I had paid more attention... If only I had cleaned my room... If only I had reacted faster. While it doesn't necessarily sound like we are doing so, each of those statements in effect makes us responsible for our own fractures. In some cases this might be the case! Should I have been horsing around with the boys in fifth grade and throwing punches at each other? Probably not. Was it my fault that I didn't put my walker close enough to my chair, so that when I reached forward I instead face-planted? Maybe so. Should I have been hopping on my parents' bed right after my tonsil surgery? Nope.

There is nothing worse than sitting with a broken bone and blaming yourself for an injury. I've done it hundreds of times before: now dad has to take time off from work to sit for hours while I get a cast. Now mom is going to start crying and get really upset. Now both of my parents will have to wake up a little earlier in the morning to help me get ready in the morning because I have a body cast. It's awful! The spiral of thoughts that run through our minds is dangerously fast, and dangerously negative. Sometimes they happen just as fast as fractures happen!
I think that what many people with O.I. (including myself!) tend to quickly forget is that fractures will happen regardless of what is done or what is not done. For someone who enjoys control and structure, and having agendas and schedules for what is to come -- having brittle bones can really trip my sense of self and ego big time! And you would think that having lived with O.I. for a quarter century I would have gotten over some of this by now.

I haven't really completely figured it out but I'll share what I have come to see:

It does make me uncomfortable that I won't know if this winter my colds will bring on broken ribs or not. I dislike the fact that when I go away on vacations, I have to pack splints, braces and slings *just in case.* And I don't know if bumping my leg will have caused the screws in my leg to have loosened themselves. What I do see is that beyond all the thousands of possible things that could go awry, and of those things only a small handful I can really prep for - I have a life to live and on most days I see the structure of my life so vividly in my mind. I see my to-do lists, my color-coordinated google calendar, the goals I have for this semester, the professional benchmarks I'd like to meet, or the parties with friends I have to plan, the books I have on my to-read list, the guys I crush on, the pranks I pull on friends, the beers on tap at the bar I have yet to try, the blog stats I pretend to understand, the dream jobs I come across online and sigh wishfully at, the killer leopard print boots I want.

And at the end of the day I realize that for all the hundreds of things that I don't see, I would never trade being able to see them for the things that I do see so clearly. Is it easy for me to say that? (Because you're probably thinking well Sandy, you don't exactly have a choice in the matter). That might be true! But if preventing fractures for the rest of my life means that I don't get to do that one thing in my life that I have my sights set on, I don't think it's worth it. Call me an egotistical freakazoid, call me whatever you want ..but ya know what? My bones heal, the gaps in my life that I miss might not. 

These are a few of the things I used to tell my parents or teachers so they'd get off my back. And for all the kids out there -- I really hope I'm not blowing your cover!!

5. "I'm fiiiiiine!" Every now and then we are afforded a 'free pass' to fractures. Maybe we got lucky and braced ourselves from a fall the right way, or maybe we accidentally bumped into something -- but miraculously no bones got broken! And as long as there was no sharp pain of a fracture I gave myself a clean bill of health. Arms crossed over my chest, face pouted, and I adamantly refused to allow anyone to "check to make sure.."

4. "It doesn't hurt that much." I never knew how to accurately gauge the amount of pain I was in. (I still don't!) When I was asked "on a scale of 1-10..." I never knew how the pain at 7 differed from the pain at 6 or 8. After awhile I did away with trying to figure 'just how badly it hurts' and realized that by saying "it doesn't hurt that much" I could knock off several birds with one stone! By saying this I knew that my parents wouldn't be so worried, and I also figured out that the crazy pain medication they'd give me would be a smaller dose. In other words I associated the pain with the medication, and the amount of medication was related to how long I could remain at school to goof around with my friends.

3. "I'm not tired." This is uttered out of the mouths of every child. After operations or major fractures it was expected that I would need to rest. And no matter how physically exhausted I felt I refused to sit around in bed for more than a few hours. For someone who does a lot of sitting in her wheelchair, I am quite frankly terrible at remaining in one position. I fidget a lot, I have a tendency to move around a lot, and being told to remain stationary sounds like you're punishing me. But of course after I came home from operations my parents would get me set-up in bed, and while I complained.. the second my head hit the pillow I would doze.

2. "I didn't scratch or pull the cotton out." In every cast I have ever had the cotton padding that lines the edge is always pulled out. Why? Because I itch. Because I scratch. Because I'm an impatient person who can't wait the 3 months until the thing gets taken off! Every time I go to the cast technicians they look at me knowingly, "I see you've been scratching again Sandy...there are red marks on your skin..." What can I say? If I had a dog I'd probably tell them that the dog did it.

1. "I won't get hurt, I just know it!" Somehow having O.I. also gave me the authority to be a licensed fortune teller. Whether it was jumping into the ball pit at someone's birthday party, or maybe it was trying to climb ropes in P.E., or the time I tried jumping on the trampoline, let's not forget when I sat on a roller coaster I was at least 6 inches too short for... I insisted on being allowed to do all these things because somehow I just knew nothing bad would happen. Spoiler alert: I never actually knew the outcome beforehand. I just wanted to try all of these things, but in my mind the more I confidently proclaimed getting hurt won't be a possibility - then maybe my chances of getting the green light would increase in my favor. Sometimes my persistence worked, often times it didn't... c'est la vie!

Back before my memory was fully functional I belonged to an Easter Seals swim group. A group of kids with varying disabilities, a parent, and sometimes their siblings would get together once a week to swim and do water-related activities. It was really during this time that my love for swimming and being around water began. The staff and volunteers at Easter Seals were equipped and trained to work with multiple disabilities, the point, from what I remember, was to emphasize the therapeutic benefits of being in a liberating and "weight-less" environment.
And while I don't remember the specifics of this swim group, I do remember that it was one of the few times (if not only times) where I was immersed in a 'level playing field' with other kids my age who were also disabled. Some may have had tubes coming out of their stomachs, some may have also had O.I., others may have had surgical scars down their backs or arms, there were arms and legs that flapped uncontrollably, limbs that curved in every which way, necks that struggled to hold up heads.. but somehow, in the water, none of that mattered.

I remember that I was excited to go to the swim group each week. I looked forward to changing into my bathing suit at the Marriott Hotel where it was held, I couldn't wait for my mom to blow-up my Little Mermaid themed swimmies for my arms. I absolutely loved feeling free alongside them, with the other kids who, like me, couldn't conceptualize what it was we were so thrilled by - but we just felt it and through the bubbles we just knew what a difference being together in the water made.

Years passed and I grew-up, funding was cut, I fell out of my high chair and wound up in a body cast for half a year - several events led up to my slow phasing out of the Easter Seals swim group. By the time I was in middle school my parents were unable to find an Easter Seals swim program for me, so enrolled my older brother and I into swimming lessons at the local YMCA.
My parents understood the risks they were taking. The class would be taught by a YMCA staff person who probably didn't have any of the same training as the Easter Seals swim program teachers did, my parents also understood that the kids in the class would be 'normal.' I'm sure that they told me all of this and in my 11 year-old way of understanding things, I probably just shrugged it off not understanding the implications of what any of that would mean. In my mind I thought I go to a school with all these regular kids so what's the big deal with a once a week swim class? I found out soon enough.

"Okay everyone we're going to start off in the shallow end of the pool..." The instructor said. And with one hand along the wall the entire class began strutting down to the other end of the pool. I sat there on the pool deck, uncertain of what to do, and feeling incredibly vulnerable in too many ways for me to count. The instructor looked at me and asked if he could pick me up and carry me down to the other end of the pool. I shrugged and nodded.
For the rest of the lesson I remember wishing that I had more clothes on than just my bathing suit, wishing that my mother had been allowed to stay, shying away in terror into the corner when we practiced our kicks. When the class was over we had 10 min to ourselves for what was called "Free Swim." Kids jumped out of the pool, grabbed at kick boards, noodles, diving rings, and squirt toys and plunged after them.

"What happened to your legs?"
"How come it looks like you have two knees on one leg?"
"Why is your chest bone sticking out like that?" 
"Why did the teacher carry you?" 
Before I knew what I had gotten myself into a small group of kids had surrounded me. I hadn't come to class in my wheelchair. Hadn't been allowed to explain anything as I usually did at the start of a school year. I was just a kid, naked in a bathing suit - and O.I.'s classic symptoms stuck out like sore thumbs.

The point of this story isn't to throw more distance between the 'disabled world' and the 'normal world.' In fact it's to do the exact opposite! Those years (yes, I continued those YMCA swimming classes..) that I spent in those classes allowed me to literally grow tougher skin. Albeit it may have been somewhat brutal and a load of reality for an 11 year-old to handle, but it's something my parents could never have taught me because they're my parents. It's not something any amount of teasing from my brothers could have taught me because they are my brothers. In school kids are not as nearly naked as they are in a swim class, and I was usually always around the protective wing of an aide. It took total strangers, peers, and a level playing field that was provided by the water in order for me to truly understand what it means when I said to them:

"My bones are fragile, I was born this way but I can do everything you guys do as long as it's in the water. I'll race you to the other end?" 

Parents of kids with O.I. are often referring to "the scream." This is the noise that sends our parents scurrying to our side and then whipping out the bag of old splints and bandages that appears out of thin air. It is not the same cry you hear when a toddler is getting a booster shot, and it isn't the same heartbreaking wail when a child's hopes are crushed at the toy store. It is part shriek, part cry, part scream, and all of it is directed at a sliver of wispy gray-white that no one can see until hours later on the x-ray. And even then it is sometimes invisible.
There comes a time when the scream doesn't serve so much as an "alarm" for our caretakers because we realize for ourselves what has happened -- we begin to recognize that the pain is coming from a broken bone, just another fracture. And instead of "the scream" we are then able to say "I just broke a bone.."
So when is that moment? How can caretakers or parents help kids develop that recognition? How do kids with O.I. become better aware and more knowledgeable of where a fracture is? How do we know how 'badly' it is broken? Or even how many places the bone is broken in?
There are a few tips that can help make the experience a little less frightening and a little less uncertain ---

Structuring the Suddenness: 
Warning: Just because you are raising a "Dr. Self" doesn't mean medical opinions should be ignored! 

• It is always most important to listen to the child! Or become acutely aware of where their hands are gripping, or which limb has become oddly limp and unused. Just because you may have heard a crack coming from there, doesn't mean that may be where the bone is broken!
• Let the child hold the broken bone as much as possible - particularly during the transition before going to the doctor's. I know that from my own experience it is difficult for parents to not want to rush in and 'fix' everything themselves; however, knowing how the broken bone feels to us, where it is, how tightly to hold, what position to rest the broken arm in are all small details that begin to build our awareness of our bodies. The body is learning even when things may be breaking down.
• Know which questions to ask. At the time of a fracture, especially for an O.I. fracture, "how did this happen?" Might be one of the first two questions that are on the tip of your tongue. But think about it!! The child has O.I.!! And most of the time, especially for young children, we aren't always aware of how the bone suddenly broke. From my experience, I used to become extremely frustrated with school nurses who would ask me "how did this happen? What happened?" before they would assess where the injury was. It doesn't help the O.I. child when you are trying to figure out the "how and why's" while they are in pain; in my experience in fact, it only made me feel worse. Instead figure out "where does it hurt?" "What hurts?" "How much does it hurt?" "Can you wiggle your fingers?" "Does your leg feel numb?" Thinking about fracture prevention is important, but not until after you have taken care of the incident at hand first!
• Let the child be a part of the 'grown-up' discussion. This might be difficult because the fine line between protecting and shielding are so often blurred. However seeing the x-ray, listening to the doctor talk with my parents about healing time, and becoming 'naturalized' to the language and vocabulary all became useful tools to becoming self-aware of my body. Of course no parent wants their child to hear the doctor say "healing might take about 5 months.." but the reality of it is that we begin to connect the pain to healing-time that is required. It is a difficult connection to describe in words, but understanding that my arms heal faster than my legs or that my ribs take about 2-3 weeks to heal have helped me become better equipped at assessing my own physical abilities.
• Routine. No one likes the idea of breaking bones becoming a routine. But because of the frequency of these incidents the truth is that there is some kind of routine to each of our own fracture management procedures. Whether the child fell off a trampoline, broke a clavicle, or sustained a bruise to the bone -- try to keep some semblance of order in the chaos. I know, I know many of you are thinking Sandy, you just wait until YOU have a kid with O.I and THEN you try doing this..but growing up I have appreciated the order in which my parents dealt with broken bones. It helps to know that small instances in life that can quickly be turned upside down are not reasons to feel despair. It helps to know that just because you broke a bone doing something your brother does all the time doesn't mean you were wrong to do it. And it helps to watch that no matter how badly things feel anything can be righted once again!  

In previous entries I have talked about what is going through my head as my body registers that a fracture has just occurred. But what is going on around me? Let's shift the camera lens to my mother --

Most of you already know that I am the only one in my family with O.I. When I was born my parents opted to not have the genetic testing (skin biopsy) to find out which side the gene was on. As a child my parents explained to me that knowing where the 'cause' of the O.I. came from didn't change whether or not I still had the condition, and I grew up being okay with that decision. I still am. I suppose that for the most part I am someone who would prefer to learn how to adapt, manage, or solve a situation as opposed to being curious about the origins of the problem. At the end of the day I go to bed still with the O.I. but I learn each day how to deal with it.

With that said, to my knowledge, I am a mutant. A genetic mutant. Growing up the Teenage Mutant Ninja Turtles were wildly popular among kids and I loved them. (I even dressed up as one for Halloween.. the picture is somewhere..) Rafael, Michaelangelo, Donattelo, and Leonardo were my buddies and it wasn't just because they loved pizza as much as I did. Or taught me to say "cowabunga!" It was because they were the first to make being genetic-errors cool. They were mutants too, the closest thing I had to people who were 'like me.' They were my mutant role models.

When you're a child you lean on your family and parents to show you how to be a person. Everyone comes from some perspective, rules, ideals, values, culture, or some understanding of the world/society in which we live. It is through this construct that our parents and family raise us. If a child is black their family teaches them about what it's like to be black; if they are Eskimos a child is shown how to survive as an Eskimo; if a child is born into a family of politicians they quickly learn about life in public office. But when a genetic mutation happens it means this is a child that has something no one else in the family has. Who does the kid lean on? Who is going to tell the child about the perks or pitfalls? Who serves as the role model? Who is going to show him or her the ropes?
For me much of that was whatever I was surrounded by. Whether it was the Teenage Mutant Ninja Turtles or Roald Dahl's Matilda or Wheels (the wheelchair character from the Burger King's Kids Club).. I learned early on that I couldn't expect my parents or family to have all the answers for me. Other kids might be able to go home and ask their parents why they don't celebrate Christmas and have a Christmas tree, but I couldn't go home and ask my parents "how do I tell my friend I can't go to her gymnastics themed birthday party?" Or "How do I tell my friend about what a genetic disorder is when we're only just beginning to learn the song 'heads, shoulders, knees and toes..knees and toes'?" Well I COULD ask them these questions, but I already knew they wouldn't be able to help. They just wouldn't get it. There were a lot of other situations where I was at a loss in. Who was going to show me how to dance in a wheelchair with that boy at the middle school dance? Who was going to teach me about wheelchair sports? What about all the politically correct and incorrect terms that differentiate a disabled and able-bodied person? How do you open doors with one hand and push with the other? What do you do if you can't reach something and no one is around? What happens if I break a bone and no one is around to help? I am sure that there are a lifetime of these situations that I could list, and I know that these are situations that I will continue to find myself in - questions that I will continue to discover answers for on my own.

There is no doubt in my mind that I wish I had met someone else with O.I., or someone else who used a wheelchair earlier on than I did. I think it would have made a lot of things easier for me, both logistically and socially speaking. But this doesn't mean that I resent the rest of my family for having missed out on this mysterious gene. When I was a kid and was fracturing more frequently (at least once every 4-6 months), when all of the commotion was done and I had gone home in my cast - I used to wish that at least ONE of my parents had O.I. too. Maybe that way they would have been able to warn me about how much it would hurt, or maybe that way they would know the most comfortable way to be picked up when you have a fracture. But no, instead as a kid I was always the one screaming my head off in the cast room -  crying because I didn't know it was going to hurt this much, and because I didn't know when it would stop, and because no one had shown me the way first. Maybe it would hurt less on that hospital table if I knew one of my parents had also felt the jagged burn that comes with a fracture... and then had grown up to raise a family, to have a life, to have survived the ordeals.
But these are thoughts that I would never allow myself to think too long on. I would immediately begin to feel guilty. What am I doing? Why would I wish this on anyone? Sure. It's true that I have managed and have done fairly well with my life, but that doesn't mean that I would want to put anyone through the same situation. Having non-disabled parents and family members is the only family that I've ever known, so of course I wouldn't trade them for anything! In some ways having unaffected family members has forced me to adapt earlier on, and to push myself to 'be like them' (and the majority of the rest of the world) as much as I am able to.

Here's a take away thought: Being a genetic mutant shouldn't just be limited to super heroes or medical labs. For me it's a way of life; it's a way of life that I do my best to live and it's not something that I think about constantly or even daily (or monthly). I live like anyone else does, I have the same questions and life challenges that you do, and in the mornings I put my pants on the same way that you do. After all of the differences that being a genetic mutant may come with - I would argue that there are a lot more similarities between me and the rest of the world than whatever lab tests may reveal, and that is how I continue to proceed.

When he wasn't looking or was too busy folding airplanes to later zing at my face, I would pluck at his Suzuki violin. In my hands it was the size of a guitar on me, but still I would pluck until he screamed at me to put it down for fear that I would break the rental. Both of my brothers play the violin, and while my younger brother is far superior at it - I grew up watching my older brother pull the horse hairs over the strings.

For those of you who celebrated Thanksgiving, I hope it was a holiday wondrously spent with family and friends! Coming back from Thanksgiving break, what better way to ease us back into the routine than a post about eating?

I know all the trash they talk about you, and believe you me, I know FAR too well what you do -- but despite all of that I'm glad we're together. Our relationship has had its fair share of bumps and fractures (hah, see what I did there?) but I've come to appreciate your quirks and learned to manage your more annoying habits.

Let's think about the first time when I, through my own self-realization, truly appreciated you. I was very young at the time, and we were still getting to know each other so it was pretty rough going between you and me. But I was sitting on the medical table in the cast room at Children's Hospital, twiddling my thumbs while I waited for my doctor to saw off yet another cast... that you were responsible for. I had spent the past couple of months relying on my parents to carry me everywhere, had spent weeks getting sponge-bathed, and was starting to get sores from having to be on my back in one place for so long. Needless to say I was more than ready to be rid of your baggage.
As with many other times I have been in the cast room, this time I was not the only patient. There was a little boy seated, or should I say squirming and wailing, on the table next to me. His parents were trying to shush him, his face was a violently furious red, and he screamed for all he was worth - twisting his face away from his broken arm. I wanted to tell him that closing his eyes wasn't going to take the pain away. I wanted to tell him that no matter how much he screamed and thrashed, it wouldn't work either, in fact moving more would just make the pain bolder. I wanted to tell him that soon it'll be all over. I wanted to tell him about patience, about healing, about getting stronger, about how in the bigger scheme of things -- his broken arm was nothing. I was probably no older than 10 but I knew these things because you had taught me all about them. In fact, these were your gifts to me and at 10 I knew that these were the things that made me different from my friends.

About that, you taught me how being different is something you adapt to instead of fighting against. You know, there are often days and nights when I think to myself that if political leaders and iron-fist world rulers could understand the things you have taught me, perhaps there wouldn't be as much struggle, hardship, strife, or anger in the world. Maybe people would want to work harder to mend, to converge, to be patient, to be stronger together, to adapt. You've taught me how to survive by adapting. Whether that's by adapting to other people's expectations of me, to the tall shelf that I can't reach, to the bank teller who never seems me, or to my friend's house that I can't get into -- you've showed me how everything is possible.
I wanted to thank you for that possibility that you continually reveal. In times like these I see so many people who have lost sight of possibility, hope, and clarity for themselves. It is a frightening and incredibly sad sight, and although I have so many amazingly supportive people in my life who help make my own possibility happen -- I believe that it all begins with you. Sure, I have to fumble and wrangle your neck a few times before you'll show me the way but it is ALWAYS so worth it!

Sometimes though, I'm not sure if you realize your scarier influences on people. Sometimes you bring a lot of fear and unknown into people's lives and I resent you for that. Aren't there better ways to prove your point? Less dark? Less of a hassle? Ways that aren't as much of a struggle for folks? Do you have any idea the fear you put into a mother who has her O.I. baby taken away because she's being investigated for child abuse? Or what about the fear of a child who isn't sure he'll be safe at school that day? Or what about the unknown for the twenty-something who isn't sure she'll ever have a 'normal' independent life outside of her parents' home? Or what about the family who isn't sure their O.I. child will live past the next day? I have seen so many of these instances play out and what makes one situation find success is strength and determination. You drag us screaming and kicking to prove what we are made of. You are unrelenting in your instructions. You give us no option but to prove the best of ourselves, but in order to do that, I understand that you must first put us in the worst case scenario. I just wish you wouldn't do that... all the time. Like, sometimes, can't you just let ME handle the remote control to life? Why does it always have to be YOU who gets to choose which channel we watch?

We can't get rid of each other. This relationship is made up of a promise more sacred than that of a vow, it'll last longer than the rust of a wedding band, and no amount of money could pay divorce lawyers to end it. So I have resolved to make the most of this -- whatever this is, whatever you are, and whatever it is you do. But after all, making the most of things is the first lesson you taught me 20 years ago when we first met, right? And just look at where it has taken us now!

With love and admiration,
Sandy

The second we entered the Children's & Young Adult reading room I'd squirm out of my dad's arms. At that point I was still about the size of a three year old but was actually between the ages of seven and ten; my manual wheelchair wasn't yet fold-able and so my parents thought  it easier to carry me everywhere in their arms. They'd set me down on the carpet and, as if I were in my own home, I'd comfortably do a crawl-hop around the bookshelves - pointing to the ones I wanted as my mom or dad took them out for me.

When I was much younger my mom would bring me to the library with her. Every week we'd come and she'd set me down on the soft red carpet, showing me how library books were organized by author last name, and how to tell which books were appropriate or good for me to read.
"You see how this label has the 'An I Can Read Book' on it? Those are the ones you should choose." Soon I would learn to not only find those labels, but also recognized the pictures on the cover and then the words of the title - unsurprisingly many of these books turned out to begin with Frog and Toad....
"Do you see this shiny medal sticker on the book? That's also a sign that it's a good book." Most of the time while she was doing that I was clambering on top of the over-sized stuffed Curious George that sat slumped in the corner. That was my routine every weekend, from when I could first confidently crawl-hop around until at least the first grade.

As immigrants to the country my parents didn't know what made-up the canon of children's literature in the U.S. So as I got older they were unable to choose books for me, couldn't decipher which were the 'good books', but still they would insist that I read all the time. Soon they entrusted my literary education to not only my teachers at school, but to the librarians and the reading lists organized by grade, kept filed away in a milk crate. My dad would pick a list and I'd simply make my way down it, crawl-hopping around to each of the towering red shelves. I'd crawl to the end of each shelf and from the ground look up at the index card taped to the side, following the instructions my mother had taught me years before about the alphabetization of author's last names.
Thinking about it now it must have been quite the odd little sight. There was me on the ground bunny- hopping around. My dad standing behind me with the list in hand following my lead, usually holding one of the little reference pencils (the ones that never have erasers) to cross off each title that I found. If I was only borrowing any less than four books I would shove them along in front of me, pushing them ahead on the floor like a stack of hockey pucks and then bunny-hop towards it. Being low to the ground I never paid any attention to the other adults around me, and the librarians all knew my name and were used to my 'peculiar way of doing things,' in fact if anything they loved my act! But once in awhile I would see the reaction another adult had whenever they saw what was going on,

"You know, you really shouldn't let her do that." I recall one lady telling my dad.
"Pardon?" My dad had set the stack of library books by the check-out counter and had picked me up while we stood in line.
"Why would you let your daughter crawl on the floor like that? It's dangerous and probably not very clean." She continued in one of those obvious-parental-styling voices.
"She's fine. She's not as young as she looks, she's eight, almost nine. It's not like she'll eat things off the floor. This is just the way she does things. She doesn't bring her wheelchair to the library." I watched my dad trying to explain and could see his words bounce off her face like rubber balls off a wall. It was pointless. Even at that age it was clear to me that she would never understand even if we spent all day explaining. And, perhaps more importantly, it was also clear to me that it didn't matter whether or not she understood my 'way of doing things.' My dad explained all that he felt he needed to explain, he spoke truthfully and defended his daughter's differences. That was all the situation required and as his child I learned that most of the time you won't ever get people to see your perspective, the point was that you tried and gave it your honest effort. And then you continue on doing your own thing because it works for you. At the time bunny-hopping and crawling around the library was what worked for me and that's all that mattered.

The line had moved on and it was our turn to check-out our books. I tugged forward and leaned towards the smiling librarian who was waiting for us, like a horse following the pull of its reins my dad walked up to the counter.
"Hi Sandy! Did you find everything you were looking for today?" I happily nodded at her and watched her scan the books, sliding it over the mysterious metal scanner and into a plastic bag. As my dad hoisted the bag over his shoulder and held me in his other arm I waved good-bye,
"Have fun reading these, I can't wait to see what you get next week!" 
--
Side Note: 
I can't stress how important reading is for children. Literacy and education are probably among my top three most important 'causes' in life. Every time I write another blog post I am always humbled by the comments and feedback I get, sometimes they are about the tips I offer and other times about the stories I share. Whenever someone compliments me on my ability to express myself though I always think back to those days that I shared above. Had I not been pushed to read, read, and read - this (among so many other things) probably would never have been possible to begin with. SO PLEASE, READ & READ TO YOUR CHILDREN!

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

"Snap, crack, pop" those sounds are the catalyst for split-second assessments, instinctual decisions, and tears that fall somewhere between wailing and shrieking. Sometimes, unfortunately, these motions are routine. Here is one routine of the many -
(The below actually happened, the times of course are roughly estimated).

• 10:18:27AM - A rubber ball in a game of four square bounces off my arm the wrong way in P.E. class in the 5th grade. 
• 10:18:33AM - I am gripping my forearm; I look at my teacher and in those 6 seconds I try with every millimeter of my wide eyes to send her the message that "something bad happened."
• 10:19:04AM - I've been ushered out of class and someone has run to get the school nurse. I wait in the hallway with my aide. My tongue is bleeding because I bit it; still, I am trying to hold the screams in. I'm not far enough away from my classmates.     
• 10:22:14AM - Running down the hall is the school nurse with a bag of my slings, splints, and other bandages. She tries to do an assessment, I don't let her touch me, and pull my arm closer towards my body. Whimpering for my mother.
• 10:24:08AM - My mother has been contacted. I am now sitting in the nurses office. The burn of the fresh fracture has somewhat subsided. I continue to grip tightly and hold still, I found the place and position where it doesn't hurt and by god I'm going to keep it there for as long as possible. I've begun to sweat through my clothes. 
• 10:40:12AM - My mother arrives at the school, she has a sling. I tell her that it hurts too badly for me to go back to class this time. I tell her that I know it's two fractures in my upper arm. She knows how much I love school, I would never willingly miss time with my friends; she understands that this time it's serious - she calls Dr. Shapiro from the nurse's office.
• 10:50:02AM - Dr. Shapiro will see me in the cast room once we get there. We just page him once we arrive, it's business as usual.
• 10:52:15AM - With great care and coaxing my mom has transferred me from my wheelchair and into the car. My arm is jostled slightly from the transfer and that's when I let the screams out. 
• 11:48:32AM - We arrive at Children's Hospital in Boston and race to the second floor. The cast technician recognizes me, but instead of a cheery hello his face quickly frowns when he sees that I am hunched over my arm, my face twisted in discomfort. He knows the deal, Dr. Shapiro is paged. 
• 11:49:18AM - Dr. Shapiro has been paged and now the waiting begins. I am 10 years old but I know that we will be waiting for at least an hour or more. Dr. Shapiro is also the attending orthopedic surgeon; of course, today is his operating day and he is in surgery. I slip into a quick nap, my body growing cold in places because I refuse to move. I try to get some rest before the dreaded part comes, the x-ray.
• 3:36:12PM - He strolls slowly down the hallway, everyone knows Dr. Shapiro is notoriously slow and unbelievably friendly. I see his bowed head looking downwards at the floor, his posture belies his reputation as 'hot-shot surgeon & O.I. expert.' Always in a dark suit and jacket, never in a hurry - the sight of him fills me with relief. We may have waited over 2 hours but he is always worth it, he always makes things better, most importantly -- he's the only one we trust. 
• 3:46:17PM - First question from the doctor is always "where does it hurt?" He then places his fingers around the sore area, the first person aside from myself to touch the injury. Every time he does this I remember in Kindergarten how I thought his fingers were actually spider legs with x-ray vision at their tips. He never hurts me, and when he does his face winces in advance so I know that the discomfort is coming; to this day I have no idea how he knows! He scribbles out directions for the x-ray order form, telling me aloud everything he writes so that by the time I am in 7th grade we both know that I could probably fill out the form myself.
• 3:50:12PM - My mom and I are waiting in the waiting room of radiology. It is only down the hall and no matter how many times I've been in this room there is always something new to distract me from the pain. The faces of children all around the world smile down at me from the ceiling in bright primary colors; there are actual x-rays of stuffed animals, robots, dinosaurs, and clown faces on the walls; the t.v. is always on; coloring books litter the tables. My mom settles in next to me after she has called home to make sure my older brother is home from school, she has updated him on what happened to me. He is my older brother and knows how to take care of himself my mom tells me, he is used to this too.  
• 4:07:09PM - A radiologist finally calls my name, she looks at the form Dr. Shapiro had filled out and I plead with her silently to pay attention to the part that says "O.I. type III, fragile." She tells me we are just going to take a few pictures, I know the deal and zone her out. As we go down the hall to the x-ray room my heart is racing, I begin to sweat again. 
• 4:08:12PM - My mother suits up and puts on an apron, she carries me onto the table and lays me down on my back. Already I am beginning to get uncomfortable. This is the first time all day that I was in this position with my broken arm, I had not yet found the 'comfort' position for laying down. As the radiologist asks me to put my arm down along my side the tears begin. My mom has to hold my arm down for me, and hold my other arm away from it. I squirm and cry through the entire process, it seems like I lay there for a year on that metal table.   
• 4:20:03PM - Finally the pictures are done and I fold my arm back inwards. But now my bones are all riled up, confused and broken, they are uncertain of where to go to get comfortable again. I glare at the radiologist on the way out, she had done this to my arm. Stupid. Moron. Idiot. We go out to the waiting room and wait for her to give us the pictures to present to Dr. Shapiro.
• 4:37:19PM - Finally the pictures arrive in a large red folder that covers my entire body. It is heavy. (This was sometime in the 90's so digital x-rays had not yet existed). We make our way back to the cast room, I hope that Dr. Shapiro would be waiting for us there, I wish with all my might that he hadn't gone back to the operating room. But of course that never happens. We will have to wait for him to come back. 
• 5:03:21PM - Dr. Shapiro flicks on the light table and snaps the x-ray on top. He confirms what I had already known that morning, there were two cracks in my humerus, it was time for a cast. He put on his apron and Odie the cast guy got the fiber glass ready. "Dark blue" I say, "just like always" and that is the first time in the whole day I thought about something other than the fractures in my arm.  

They'll tell you that the great adventure you just began with me took a turn towards the uncertain. They'll tell you raising me is going to be filled with insurmountable challenges and numerous struggles. They'll warn you about the medical bills and costs I'll require. They'll try to explain all the surgeries or therapy I'll need in the coming months and years. They may tell you to not plan too far into my future. They'll tell you that they're so sorry and ask if there's anything they can do for you, or me. They'll tell you that I will consume your life. They'll harp on about the sacrifices you'll have to make (as if they had a clue). They may even take me away from you for awhile. They'll smile in that way that belies their relief that I am not their child.


You'll take it one day at a time with me. You'll feel sad when you watch the other parents with their gurgling and healthy babies. You may feel angry and frustrated because you're always grasping for that "what else can I do..." Your blood may boil when they tell you you're wrong but you just know you're right. You may ask yourself why you continue to do this. You'll doubt yourself more than a few times, more than a hundred times. You'll soon find yourself unwilling to give-up; and you won't know why, or maybe you know exactly why but it's difficult to put all of the emotions and beliefs into words. You might even get fed up with me on more than a few occasions. You may feel guilty for all the reasons 'why' and 'how.'


I'll change your life's priorities. I'll show you what you are capable of before I figure out what I am capable of. I'll invent new dreams for you. I'll teach you how to be patient and push your sense of trust. I'll reconstruct your idea of 'family.' I'll exercise your strength just when you thought you're exhausted. I'll hold you to your stamina and make sure you never waver. I'll push your determination to the point of unrelenting. I'll show you what it means to go to "infinity and beyond!" I'll guide you to be my ears and eyes until I can do it on my own. I'll prove to you why expectations should never be set in stone. I'll make sure you're paying attention to the smallest of things. I'll instill your intuition with an iron-fist confidence. I'll challenge your sense of courage and may change your sense of faith.



     

I remember there were times when to get a point across, my parents told people that they had a severely handicapped child:
"My wife doesn't work because she needs to take care of our severely disabled daughter.." 
"Our family appreciates any financial assistance you may be able to provide. We have a wheelchair-bound, severely disabled child and much of our family's attention & finances go to her care.." 

But then there were times when I was suddenly capable of everything in the world:
"It's important that Sandy participates in everything her classmates do in school. There is nothing wrong with her mind, when she doesn't have a broken bone nothing is wrong."
"There isn't anything wrong with her - she just can't walk." 

Needless to say hearing how my parents described or explained O.I. to others was very confusing for me. Sometimes they made me out to be extremely severe out of nervous protection for me, and other times I might as well have been any other kid who was encouraged to do everything I wanted. Personally, I never considered myself to be severely disabled. I could probably count on one hand the things that I wish I could do but I can't (future blog post!) - for everything else though I have figured out an alternative. This has led me to believe that the interpretation of 'mild' 'moderate' or 'severe' varies between the individual affected, and those who are their caretakers. For instance, when I was in a spica cast I didn't consider myself to be severely disabled. Though I needed help with virtually everything - I was still able to live my life. There was always a way to do what I needed to do and what I wanted to do, and therefore in my mind I didn't consider myself to be severely disabled. However I'm sure that for my parents my time in a spica cast was one of my more 'severe' O.I. phases. Simply put, they had to do more for me than when I was in a long leg cast, or even in no cast at all.

I get slightly uncomfortable when people compare severity of O.I. or any other disability. How do people determine severity? Is it by the amount of pain? Limitations? Capabilities? Bone deformities? Number of fractures? Surgeries? Prognosis? The categories are limitless and there are no clinical benchmarks that I know of or empirical standards to measure severe-ness by (excuse the social science in me...) Granted some cases are pretty obvious - I know of O.I.'ers who are able to walk without any assistance, while others have difficulty sitting in an upright position (and they even all identify as the same O.I. type!)

All of that aside -- and back to the original point of this entry -- observing how my family defined my disability shaped my own idea of it. I grew up understanding that my O.I. can give me more trouble than other times. There are times when I need to be paying more attention to 'it' than others, and other times when it's just a thing that allows me to cruise around town and be at ass-level with everyone else. Since I ultimately didn't agree with my parents' idea of severe or mild, when I got old enough, I didn't take their definition of my disability as my own. At some point I realized that they are not the ones who live with it, they're not the ones who wake-up every morning and decide whether or not today will be a high or low activity day, and are not the ones to decide when to take the pain medication after a fracture. Sure they may have taught me how to make these decisions on my own, but I've decided that it makes my life easier and less barrier driven when I don't have to consider whether or not I'm 'mild' 'moderate' or 'severe'; also, the barriers are less of an affront when I am not carrying others' definitions of my disability on my shoulders.

"Sandy, I was reading on-line that there are different types of O.I. So what type are you?" My friend from college asked. 
"Oh I don't know. I'm clinically type III but sometimes I think that I'm just my own type after all."

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