Showing posts with label parents of disabled children. Show all posts

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.

I think that there are lots of parents out there who talk about how being the parent of a disabled child makes them different from parents of non-disabled children. I'm glad that they do talk about that difference because it's important that our parents have support systems! In this post I share my own observations from the perspective of a daughter.
I know you are different from other parents because: 

1. All of your patience first went to me.
You had all the time in the world to transfer me inch by inch, from the floor to the car so we could go to the doctor's.. yet again. You had all the time in the world to stand by and go through all those days, weeks, months of healing and then recovery. You had all the time in the world to help me adjust to what the world sounded like through hearing-aids. How I would loathe to be the the nurse who changed my diaper the wrong way. I fear for the healthcare providers who dared to leave us waiting around for 2 hours. I sometimes feel bad for my brothers who were hurried to Being a Big Boy Helper because you spent the night with me post-op. I tremble for the police officer who was suspicious of your explanation of why my spica cast wouldn't fit in a car seat.

2. You are always ready for interruptions. Always. 
I never had to wonder if it would be okay to interrupt you at a work meeting. I never questioned whether or not I'd have to call the neighbor instead. I never thought to ask if you needed time to go look for the cast or brace, or pain medication. And when you did show-up you made it look seamless, like you expected to be there the whole time.

3. You worried about the expected, never the unexpected.When it was time for that first sleep-over, or my first over-night trip, or the first time I went away from home alone, the first time I crossed the street alone - those moments were vacuums of sleep and sanity for you. And yet those are things every average child experiences in his or her lifetime. When I climbed on top of my wheelchair to reach, or when I still preferred to do a half-bunny-hop-half-crawl at the age of 12, or when I slid down the stairs with a full leg cast... you simply shrugged your shoulders, assuming that those were just behaviors I used to adapt. Those are not things every average child does, but they are the things you expected your child to do: and that's how I knew you accepted and understood my differences. This is how you made me feel normal.


What other things makes parents of kids with disabilities different? What else am I missing?   

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!

5. Invincibility: Whether it's soaring high on a swing set or the freedom of doing flips underwater in a swimming pool - life doesn't always need to feel fraught with worries of fractures. By showing young kids that it's possible to grab life by the bull horns without feeling pain, it instills a spirit of joy and 'can do' attitude early on!

4. Rehabilitation: There are numerous life lessons that are taught when anyone is in rehab. Whether it's recuperating after an injury, exercises that stress patience & persistence, or just the mental focus of putting one foot in front of the other: the experience of rehab is humbling. For a child it's important to not only teach how to 'bounce back' after an injury or operation, but in doing so you are showing him or her the process necessary to come back after any other future set back.

3. Self-Advocacy: It doesn't matter that children are 'only minors' or that children have parents and other adults who will make the decisions. Start simple and small: are they the ones to choose what they want to wear in the mornings? Are they advocating for how much something hurts? Can they choose what color the cast is? Aside from the decision making skills or the self-awareness that this builds, it also helps children begin to realize that they can speak up about what their disability needs vs. the disability speaking for them.

2. Collaboration: This seems almost silly to include because it is virtually impossible to avoid doing. But I think, at times out of fear for safety, there is a hesitation among the grown-ups of children with O.I. to allow kids to work with others - of every ability. Since O.I. is such a rare condition it's important that kids learn how to step out of their comfort zone and collaborate on projects, team sports, at camp etc. Working together, regardless of how rare or common the differences people have is a valuable skill as adults.

1. Adaptation: Childhood presents itself as a period of exploring the world around, and learning what your body is capable of doing. In other words, for a young child with O.I. childhood is also a period rife with opportunities for adaptation; learning how to do so successfully and unsuccessfully inspires creativity, problem-solving skills, possibility, and what is so often the most difficult thing to do: to simply try. 


    

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?" 

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.

Generally speaking I am not a fan of labels at all (see my past entry about OI labels). But name-calling and verbal bullying is a form of labeling in its most loathsome state; this is a kind of labeling that isn't used to distinguish so much as it degrades, and it doesn't serve as an identifier so much as it discounts. Even if you don't have kids yourself, it's hard to ignore the anti-bullying efforts that have gone viral across social networks, mainstream media, and appear in headlines on a regular basis.
What's poignant about these anti-bullying efforts are the perspectives that they are coming from. Sheesh, can't believe I'm about to utter these words... but... Back when I was a child, anti-bullying efforts came from ridiculously cheesy cartoon characters, or adults who simply told us to "say no!" Or "don't say anything if you have nothing nice to say!" Now the efforts come from targets themselves - individuals who have taken the situation into their own hands and decide to rise above their abusers. We are only beginning to become a society that is able to look at its uglier aspects, even if it means we still flinch and want to look away instead.

The first times I heard the words "cripple," "crip," "gimp," or midget" were unmemorable. I don't recall the 'life-altering' moment when these words were first introduced to me, but it was probably around middle school that I knew these names existed (and isn't this the time when everyone else 'discovers' all the other insults??) No one else in my family has a disability, and I was generally the only student at school with a visible disability or used a wheelchair - with that said, I had no other adult or peer who would tell me the drawbacks and pitfalls of having a disability. I was very much my own lab rat. So when I first heard those words I didn't already know that they were negative connotations, it was the way the kid had said it in a jeering tone or a hushed voice so teachers wouldn't hear. But still, it took me a few years to fully realize that such language (especially coming from someone without a disability) was insulting and not to be tolerated. It also took me awhile to figure out what the words meant, and when I figured that out on my own - I simply decided that I didn't fit those terms so I wouldn't let it bother me.
When someone calls me a 'cripple' I see it as a descriptor of only a tiny slice of who I am. In my mind those labels don't apply to me because I simply don't associate myself with them. I'm too small to ride on most roller coasters but I'm too big to be captured in a one word insult. What can I say? I'm a dynamic person! When someone says that I'm a 'midget' my gut reaction is to say no shit I'm short - good observation skills Sherlock. How about you tell me something I don't already know? Usually it's not long after that the person realizes I'm a 'midget' who will readily give you a swift word lashing if you irritate me enough. Over time I have been able to accept my disability, whether or not I'm consciously aware that I'm even doing so. Being able to do that, in my own way and at my own pace - has helped me build a better sense of myself and identity so that when I am called names, my foundation is not as easily rocked. I've continued to work hard at understanding what makes me Sandy; it will take a lot more than a bunch of ignoramuses throwing around names to undo that.      

Having any kind of disability isn't always the most stereotypical beauteous thing to have. At least not readily, not when the disability is seen by itself, not without some self-produced effort and conscious decision to accept the disability. But acceptance takes work, it takes time, it takes failure, it takes strength.. and all of the other most difficult nuts and bolts of life that a person encounters in one lifetime. I believe that this is why so many resort to rejecting somebody's difference so quickly; simply stated - it's just easier to reject the difference than it is to accept. Just slap a label on it and shove it into some other crowd, or program, or institution and society doesn't have to look at it again for at least another 10-20 years.
But as we've seen throughout history, it's becoming increasingly difficult to just 'slap a label' on something and try to suppress the voices. I guess that the point of this ramble is that addressing bullying issues isn't just about understanding the need for equality, or inclusion. It's far more than the physical safety and mental sanity of our young people. And it should always be about more than the liability of the institutions that these incidents happen in. When we seek to address bullying in our schools (and elsewhere), I hope that there is some aspect of creating a space where every child is able to discover those tougher 'nuts and bolts of life' that I had mentioned above. Call me an idealist or what have you, but I believe that given the chance and opportunity - every young person has the ability to accept, no matter how difficult that process may be.

We can all make acceptance a way of life and not just an ideal we strive for, or a campaign platform we lobby politicians to provide legislation to. Every one of us has something to accept about ourselves; so let's stop wasting time doing something "because it's easier" when it's only robbing us of time we should be investing in something of far more value: bettering ourselves.

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.

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

Posts from this week can be found below --

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!

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.



     

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.

In a previous post I had mentioned that there are a handful of things I wish I could do but I can't, for everything else I have figured out an alternative. Here are those 5 things:


1. Run a marathon. Well, I wish I could run in general. I'm a sucker for all things fast and speedy. But there is something about marathon runners that's incredibly dedicated and determined. To be able to say "I pushed my body through 26miles.." is probably something I won't be able to do any time soon.

2. Snowboard down a mountain. A lot of my friends snowboard. No, I don't want to ski - I want to snowboard. My friends make it sound cool and it looks awesome! Besides there aren't too many ways I can really enjoy winter and the never-ending piles of cold white stuff that we get here in the Northeast. To race down a mountain on a board, fly through the air while you're doing gravity-defying turns and flips, and then land upright (hopefully) -- what's not to love?!

3. Diving into a waterfall. I can't really explain this one but it's just something I want to do.

4. Climb stairs in my wheelchair. This would solve a lot of my day-to-day problems, not to mention it would make it SO much easier to hang out with my friends (most of whom are not wheelchair users). Not only are these special chairs way out of my budget but I also doubt my health insurance would ever say yes, climbing stairs in your chair would dramatically improve your physical health - we will buy it for you. Even if I did somehow manage to get one in my possession some day, I would probably still be paranoid of it malfunctioning in the middle of the staircase or something! What can I say? I'm suspicious of technology..

5. Stop breaking. This would be the ULTIMATE dream for me - but it's not something I've figured out how to do yet. I know, I know, we can't STOP breaking but we can do our best to prevent fractures from happening and strengthen our bodies so that fractures are not as frequent -- but don't we ALL wish we could just STOP already?!


For everything else that I have ever wanted to do that may have seem slightly ... impossible.... I have either just done it with all the risks & consequences in mind, or I have been lucky enough to find an alternative. As someone who is an adult, my capacity to "just deal with it" is a lot greater than when I was five years old, and unable to "deal" with not being able to run around with my friends. There isn't an easy answer to teaching kids that unfortunately their disability is limiting in some capacity.


(Major bonus points & automatic friend for life if you message me telling me how I CAN do one or more of those things).

Tips on "getting over it" :

• Instead of saying "You can't" it's less harsh and less definitive if you said "I'm not sure..." or "I don't know..." 
• Don't bullshit. At a certain age it's appropriate to cover things up and say "well you can't go on the Superman roller coaster but the kiddie one is just as fun!" But after a certain age we all know that's just not true. Being honest and owning up to the facts and reality builds on a younger person's ability to cope. "I worry that you might get seriously hurt if you went onto the 'bigger' kids' rides.." is legitimate, honest, and also introduces the idea of consequences
• Personally I have 'gotten over it' by finding things that only I can do well that other kids aren't able to do as well. These are things that I am passionate and interested in, practice a lot of because I enjoy doing it, and have found my own 'thing' to hold over other peoples' heads and have THAT be out of reach for THEM
• Allow the time and ability to express how upsetting it is to not be able to do something. Brushing it off and moving forward too quickly is just another way of 'covering things up' and it will feel like you are not legitimizing a young child's feelings or dilemmas

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."