Showing posts with label OI child. Show all posts

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?" 

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.

By nature I'm not a very confrontational person so I'll try to be as civil as possible. I should warn you that what follows may make you quite a bit uncomfortable -- I am not sorry for that.

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?

Posts from this week can be found below --

Maybe it was around the time I started jumping, skipping, and running in my walker that my physical therapist decided to switch to crutches. Mind you it wasn't the kind of crutches that dig a deeper pit beneath your arms but the kind you slip your wrists through, and then grip. I'd had my red walker since I was in Kindergarten till the fifth grade, and very rarely did the arm rests need adjusting (maybe once every 3-4 years?). My red walker was like my own mini-fort of safety, confidence, and independence. There were four prongs, the front two were wheels and the rear prongs had rubber stoppers. There was a front piece to it that served to connect everything together, and in my mind also served to stop me from falling over or from otherwise getting hurt. I used to turn around and sit on that front piece (even though it wasn't really a seat, and even though my P.T. said it wasn't safe). I could put my entire weight on that walker! I was able to lift it just enough off the ground to be able to turn corners, or even do a full 360 turn-around. Suffice to say I felt safe in that walker, it was with that piece of equipment that I learned to take my first independent steps in.
So when all of the safety, comfort, and security was stripped away from me I got nervous. Immediately the first thing I noticed while wobbling in my crutches was: there is nothing in front of me. My face could see the immediate floor in front of me. I then noticed how much of my weight I had distributed throughout my forearms with the walker. In crutches all of my weight seemed to be leaning on to two metal extensions, resting on rubber stoppers that were never completely flat on the ground - but instead always at an odd tilt, this made me nervous. What if it slipped? All I could see in my head was the replay of me face planting onto the pavement, crutches flying with arms and legs pointed in every which direction - kind of like a cartoon dog slipping about on ice skates.What if I forgot which I was supposed to move first - my leg or my arm? With the walker everything seemed so basic, so intuitive, it seemed like I had to relearn and reteach my body how to walk again. Had I really taken steps towards my independence? Or was I now just re-inventing the wheel?

"Okay, so which do you want to use today?" My middle school physical therapist had both my red walker and my new silver crutches in front of me. Without hesitation I pointed at my red walker.
"Well let's do some walking with your crutches first okay? And then we can play soccer in your walker, does that sound good?" 
"Fiiiine-uhhh" I grumbled.
Slowly and with a lot of patience from my physical therapist my body became used to the crutches. I found that I was able to stand with a lot more ease, move quicker, and suddenly my movement seemed to flow a lot more naturally. I was no longer pushing and jerking myself forward. Everything seemed so intuitive after a few weeks: I knew just how much to put my crutch forward without over-extending myself, I could match where my foot stepped to with where my crutch was, I understood the cross-rotating pattern of left-right-left-right-crutch-foot-crutch-foot. The weight on the palm of my hands where I gripped loosened over time, I was no longer as nervous, I was no longer scared of my new boundary-less independence.

It became clear to me that I became comfortable in my crutches when I used them on my own, at home. I knew that I preferred my crutches when I chose them over my walker when my physical therapist asked. And most of all my crutches soon became a natural part of my school day when I felt comfortable enough to walk with them around my friends at school. I was no longer limiting my use of the crutches when everyone else was in study hall and the pathways were safe for me to exercise in. I'd use them to go to lunch, I used them during P.E. class, and sometimes during the day when I was tired of sitting in my wheelchair.

The decision to switch from a walker to crutches reminded me of how resilient my body is despite its genetic fragility. It still shocks me how adaptable we are and how with practice even the most challenging and daunting experiences can become second nature to all of us.

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.



     

*Side Note: I'm not necessarily endorsing these ideas, they are just things that I have put down my cast. Repeat at your own risk!*

1. Ruler. The wooden ones with the metal or brass edge. Just enough of an edge to itch that impossible spot that always stirs me awake at 2:45AM and then every hour after that.. GOD DAMN IT!
2. Pen/Pencil/Marker. Because these are on the shorter side they are more effective tools to itch an arm or a short leg cast. The cylindrical shape, for me, doesn't tickle the bottom of my foot in an unbearably gigglish way whenever I resort to this technique. Be careful of tips breaking or losing the caps somewhere in that dark and itchy abyss.
3. Money. If you have an issue with spending you could always take matters into your own hands by stuffing your budget in there, 2-5 months later and you'll find that you're able to teach yourself self-control! Or if you were a six year old like me and was suspicious of whether or not the piggy bank actually just ingested it all on its own.... 
4. Coat hanger. Who says that coat hangers are only good for unlocking doors of a car? These suckers can hang that itch in no time! But be make sure you stash it somewhere safe so that your parents don't yell at you when they find a bunch of wrangled coat hangers under your bed. "It was for school..." doesn't exactly fly. 
5. Freeze chopsticks. I know this sounds really weird so before you go putting your judgy face on, let me explain! One summer I was stuck in a long leg cast and it was sweltering. Like most O.I. people I hate the heat and my body doesn't do well, having an extra 10 pounds of cotton and fiber glass certainly didn't help. I wanted to cool off but I couldn't get my cast wet... so I pilfered a few chopsticks and put them in the freezer, stuck those down my cast and it was instant relief! 
6. Cotton swabs. I don't know what possessed me to want to add MORE cotton in there but it happened. I put cotton swabs at the end of an un-sharpened pencil and in my mind it was like a soft plow, pushing away all that psycho itchiness somewhere deeper. 
7. Air. I have literally taken a hair dryer and aimed it down the cast. 
8. Makeshift hooks. I have bent paper clips out of shape and into the necessary hook form, then tied my 'creation' to shoelace or a string then literally tried to bait that scratch out into the open!
9. Medicine. Kids can be very innocently literal. I took my pain medication and decided to dump it down there because... well... that was where the pain & itch was! D'UH! 
10. Lego people. Don't ask, I don't know what I was thinking, don't tell my brothers. But yeah it happened. I think those miniature Lego figurines all hate me now. They've sent word throughout the rest of Lego Kingdom -- warning their brethren of the insane human who has suffocated so many of their fellow beings between skin and fiber glass. (Sometimes they come and haunt me in my dreams!) 

This post comes from a story my mother used to tell me.

At first she didn't think she would be able to do it. She doubted whether or not she had the mental and emotional strength to care for an extremely fragile and tiny human being, that human being was her infant daughter, me. My mother was afraid of hurting me, of causing more damage, she didn't want to be responsible and probably felt a certain amount of dread and guilt when it came to taking care of me. Although it used to hurt to hear her tell me this, I have come to be able to place myself in her shoes: and I just can't blame her for how she felt. Mentally I have decided I cannot choose to be angry at her, and emotionally there is no longer any feeling of hatred or resentment whenever this is brought up in my family. I can't be angry with her because she wanted to give up on me when I was born. It must have been scary and terrifying and a whole slew of other emotions that ... quite frankly... I hope to never experience myself. (Being able to forgive is a whole different story though, that process has taken many years of my 20 something years of living). And so it was that for much of my early infancy I was sent away, placed in the care of my paternal grandmother.

"All of my paycheck went to babysitting and nannying fees that you and your older brother required" she would tell me. It didn't surprise me that my mother only trusted family members to look after me, her only disabled child. I am also sure that it would have been difficult or near impossible to find a babysitter skilled enough to know what to do with an infant who had O.I.
"I only trusted family members. At least this way everything would still be kept in the family, especially if something went wrong. There was no need to involve other people or strangers. I was tired of hospitals and strange doctors already."

In the re-telling of this story my mother always made it a point to let me know that she came and visited me every opportunity she had.
"Whenever your father had the day off or any free time we would drive over and come see you." I lived at my grandmother's apartment, "all of your furniture and medical equipment was over there. Your crib, your bathtub, the special seat you used, any of your splints and casts -- all of that was over there. You lived there. Most of the time you just lay on the couch and watched t.v., you were quiet unless something was wrong, and other than the broken bones you were a non-fussy baby." For awhile there didn't seem to be any issues. I was content, healthy, and seemingly happy. My grandmother was getting paid and had no complaints, and my mother was able to continue on with her job and career as an accountant.

It happened when she came to visit one afternoon,
"One of your arms wasn't moving and I noticed it right away. You were a baby and normally babies are constantly fidgeting and moving about, everything else was moving except for one of your arms and I realized something was wrong." To this day I find it shocking that my mother could immediately tell that something was wrong, but it is also relieving. It's relieving to know that despite sending me away as a baby my mom was somehow still connected to me, in fact it makes me glad to know that her mother-instincts were still on point when it came to my well-being.
"I told your grandmother that I think something is wrong with your arm and that I should take you to the doctor. But she refused to believe that anything was wrong. She kept insisting that you weren't crying and that you were happily watching t.v. But I knew something wasn't right. My gut told me." Somewhere in the conversations my mother and grandmother were having was a great misunderstanding.

My grandmother interpreted my mother's concern as accusing her of having done something wrong, or worse injuring my arm. But this in fact wasn't at all the case.
"Since I knew you had a brittle bones disease I knew it wasn't because of anything your grandmother may have done. This is just something that happens with you and I am not sure she ever understood, I wasn't blaming her" my mother would say.
"I told your grandmother that even though you were a baby, in your mind you probably knew that it was broken and you had taught and trained yourself to not move something that was broken. I assumed you weren't crying because you had probably cried enough. I believed you had no more tears to show that you were in pain, I thought you were probably tired from having cried so much already."

Every time I heard this story I was always amazed by how much my mother "just knew" and how accurate her "gut instinct" was. This relationship isn't something that I can really describe but I am sure many other OI parents are familiar with this 'feeling.' Although now that I think about it it's probably not just limited to OI parents, probably every parent has this ability -- it's like a superpower, another sense that clues parents into what may otherwise be indescribable for a child. (Pretty cool for a parent! Sometimes slightly annoying for a child!) 
After that incident occurred (and it turned out my mother was right, I did in fact break my arm), she decided to stop sending her children away for other people to care for. She realized that not only did she just know what to do but in fact with practice, and by being around her kids everyday she did in fact have it in her to raise and care for us. Over time and with numerous struggles in the process my mother became less fearful of my limitations and disability. My mom's ability to be my full-time care taker as a child took patience, experience, failures, mistakes, and a strength that grew over time; as her daughter I won't know what else it took but I'm sure there is much more to it than just that. (I MEAN, LOOK AT HOW I'VE TURNED OUT! :-P)


Now that I've written this post I'm beginning to wonder why I felt the need to write it out. I think this is going to be one of those stories I wrote without fully understanding the point myself. There seems to be too many lessons to be learned and those lessons will probably vary depending on the point of view (are you a child with O.I.? Or are you the parent? Or are you the relative? Or are you a caretaker?). I believe that this is one of those stories where the meaning will evolve over time. When I read this in five years I will probably get something very different from the story than what I get now...and that leads me to believe that you probably will too.

At this point in my life I would rather raise a drooling three-headed dog than a human being, I'm just not interested in having kids. It's more than the genetic risk or the potential damage it would do to my physical anatomy, right now I have an aversion to all crapping, gurgling, milk chugging, and diaper-changing babies. When other people are "ooh-ing" and "aww-ing" over babies I automatically zone out. To me the wisps of fish-scale clouds are far more interesting. Of course given how old I am this could easily change in the next 10 years...(is this what people mean when they say life is an adventure?? Because to me it's just shit scary!)

But this doesn't mean that I have my own ideas of parenting. In the natural progression of this blog I've written many entries that inadvertently comment on parenting, and what I think is "the best thing to do." Probably .009% of these comments come from my brain, but the rest comes from experience - from what my own parents have done. Whether I intended to or not I have done it over and over again: What would I do if I had an O.I. child? What would I do the same as my parents? What would I do differently? 




5 Things I would do Differently:

1. Instead of isolating me from other O.I'ers I would encourage more interaction with O.I'ers. Whether that means camps, or conferences -- I now understand the benefits of being a part of the community. Too many times growing up I would wonder this question silently to myself What do other kids like me do? How do adults with O.I. do this? It'd be so much easier if I knew someone like me. Sure, O.I. might be a very rare condition but from my facebook page alone, I know that 241 of you exist!! 
2. Though my parents did this on occasion I wish they would do this more, particularly when I was a teenager: Put the person first and the O.I. second. Not only does this enforce a life time of 'can-do' mentality, but it strengthens skills in adaptation. Learning to adapt life and the things you want to do to the disability instead of the other way around is empowering, and to me, is critical to living successfully with a disability. Had my parents stressed this more with me I would be less afraid to try new things or feel less like I need to "prove" myself.
3. Trust that I will figure things out on my own. My parents had a tendency to jump to me and my brothers' every beck and call (we were/are incredibly spoiled and in many ways I find it wrong and slightly embarrassing). I think this is similar to the point above -- allow me to figure out how to adapt instead of being reliant and counting on someone else always being there. 
4. Perhaps it's because the rest of my family is unaffected by O.I. that it's difficult/impossible for them to do this, but I wish my parents had been more open to discuss the differences between having a disability and being 'normal.' Especially during the time of my life when it was most consciously obvious to me, during adolescence. 
5. Don't hide feelings of being helpless or scared. I've said this before but I will say it again: when kids see you are vulnerable that's how they know you're human too. Parents will seem less like they are 2000 Light years away (Green Day reference!) and it will be easier to bridge the gap, especially if the gene is a mutation and no one else in the family has O.I.

I don't remember the pain or even which bone I broke. I don't remember how old I was or if I had started school yet, (but I think I was in elementary school). I don't remember what the cast looked like or how long I was in it for. For that first fracture I ever remember, I only recall what I was doing:

I don't know about you but this week just seemed to drag on forever for me! In between work and getting ready for the upcoming fall I managed to squeeze in a Red Sox game and saw the movie Friends with Benefits; then my younger bro turned 18 and I attended an event that honored the 21st Anniversary of the ADA.

• Monday's post: Though difficult for me to put into words I know that the 'guilt' some parents may experience about having/raising a disabled child is a common feeling. This is an on-going issue so I'm sure I will return to this topic in the future

• Tuesday: In this entry I wrote about my most traumatic fracture to date. After a fall from my manual wheelchair: two fractured femurs, a pool of blood, and an ambulance ride later I learned what to do in the event of a '911 fracture' incident. 

• Wednesday: In elementary school I had a lot of specialists come work with me. My memories of special education were not as "fun" as the adults tried to make it out to be though....

• Thursday: Despite two-decades of sitting in my wheelchair it doesn't seem like my body is getting any more 'used to it.' Here are some tips on sitting for hours on end! 

• Fracture Free Friday: What's the point of having a rod surgery if you can't walk 'normally' afterwards? I talk about some of the pros & cons of rod operations in today's Fracture Free Friday post over at Unbreakable Journey! 

• The fast facts of telling someone in an emergency setting about O.I.: it means she has brittle bones, there have been numerous fracture before, there is a specific doctor and hospital that she always goes to. This allows strangers to the condition to know what it is they are dealing with and where the end destination for them is
• If possible it's important to keep awake. During the wait for the ambulance and on the ride to the hospital I remember that everyone was trying to keep me awake and conscious
• In this incident I was in middle school and old enough to know what was broken, but this might not always be the case for younger children. Use your best judgment because you probably know the child the best! And if you're unsure it is probably best to have them be transported to a hospital right away so that x-rays can provide the confirmation for you
• I was lucky  that my doctor was around at this time and I would advise the emergency team handling the situation to speak directly with the orthopedic doctor. Otherwise, now you know to that added pressure is not the way to go and should be avoided at all costs when transporting someone with O.I. Use tape! 
• It was helpful that my family and the emergency crew remained calm. I probably would have been in far more discomfort and unable to focus on where I was most injured
• Listen to the person who is injured
• I don't know how my mother got me from being face down on the ground to being on my back on a pillow, but she did it - and the best thing about all of that is that I don't remember the transition so I don't remember how much that probably hurt
• If there was a traumatic fall of some kind it will probably take a few minutes for shock to subside and for the person to connect with their body again - trust that the injured person will tell you where it hurts when the time comes!