During camp I had an interesting conversation with a fellow camp counselor about the way parents of disabled children raise their kids. I was reminded of this because during dinner tonight I was reminded of how my mother always pushed all three of her children to succeed and to do well. Even when other adults would tell my mom "oh, you should let Sandy do as she pleases and don't push her too hard because she's already disabled as it is.." But my mother wouldn't have any of that nonsense, she was adamant about holding me to the same standards that she held for my older and younger brother -- and I must admit that (as difficult and frustrating as it was for me) it paid off incredibly well.

I realize that this is a very sensitive topic because each child is different, each disability varies in its severity and as I had noted before - even within the same clinical type of O.I., our abilities cover the spectrum of mild, moderate, and severe. This post isn't about advising how parents should raise their kids (I AM IN NO POSITION TO DO THAT!), I'm simply reflecting and even realizing how appreciative I've become of my mother's somewhat relentless standards. Her slight insanity when it came to "doing well" has become so innate in me that even if it's in a field that she never had any interest in, even if it was in an activity that she didn't even know I was involved with, or if it was a goal that I had set for myself that she would never know about -- mom's "way of doing things" has helped me get there.

Being the child I was never really aware of how other adults (teachers, doctors, nurses, school nurses, aides etc) reacted towards the way my mother pushed me. In my opinion, I think that it's a common attitude towards people with disabilities to allow individuals to achieve some kind of "standard benchmark" but then after that is done, we are all but forgotten. For instance: there is an organization in the state of Massachusetts that provides some funding assistance for higher education for people with disabilities. The organization's focus is rehabilitation and vocational services, so as long as you're going to school with a specific VOCATION in mind - they will help to pay for your college. And then the second that person lands a job their case is closed and you never have any contact or assistance from them again unless you need help finding a job. In my case, they were fairly helpful for me when I was in college -- they paid for my laptop, gave me a waiver for textbooks, and paid a portion of my tuition each semester. But then after college, and when I wanted to go on to grad school their response was "sorry, we don't help with education after college."
It's a bit hypocritical, I think. For me that message was basically saying "you want to continue on learning? Why the hell would you want to do that for?! And you want to be able to have a professional career? That's great, good luck with that but we're not going to help you anymore." It drives me crazy when society puts a ceiling-cap on the achievements a person can attain. There are hundreds of other examples of when society does this to a person with a disability and I think that after getting this response thousands of times over, it can be disheartening and a feeling of hopelessness can begin to fester.

That's why I am thankful for all the times my mother's insanity put my disability second to last and always pushed me to do well. "You broke your arm in gym class? Okay. I will come bring a sling for you and we will go see Dr. Shapiro after school is over - but go back to class for now. I will deal with the school nurse." My attitude towards a broken bone (depending on where and how big of a break it is) is generally just suck it up and deal. As much as I would like to THINK that this attitude was just my own independent-stubborn-as-a-bull-tough-girl-visage, I know that 95% of it comes from the way my parents' attitude was towards a broken bone. Every time there was a fracture the resounding response was "this is not going to stop you because I'm LITERALLY not going to allow it to stop you because you are going to do what is expected of you first and you are going to do it well.." 


I remember my mother sending me to my piano lessons with one arm in a sling, and after the door was closed my teacher would just look at me and say "Okay so we're just going to take it easy today..." to which I would respond "No I can play the piece, my mom made me practice all week.." Over the years I've come to see that this 'mentality' and 'attitude' is not so much just a perspective but an entire paradigm all on its own. The beliefs of this paradigm are that I am capable and will succeed; the pattern of the paradigm is one of struggle, persistence, then endurance; and one of the most critical pieces of the foundation to the paradigm is that my disability does not define who I am. Without this last piece none of the other aspects of the paradigm would be able to stand up to much.
With that in mind, it makes sense that while growing-up I didn't really have any other option to react towards a fracture because (as I grew older I realized) I didn't know how to react any other way to a fracture/other aspect of my disability. Those tools and other ways of coping were just not in me! The only options available to me were Onwards and Upwards. And although that is beginning to slightly change (inching towards change) for the most part those are still the first tools that I reach for.

I cannot imagine how much work my parents put into raising me. I can't imagine the talk that went on behind their backs as they raised me. I don't know how they dared to put me through things that no one else could have possibly imagined for me. And I won't know how it feels for them as parents to prove the doubters wrong; I wonder how it felt for them be able to say "screw your standards, this is how I define disability for my child, and this is how my disabled child will be raised." It's gutsy and even noble! Though I know sometimes I have my weaker moments, for the most part I think I'm a fairly strong person and can get through difficult times -- that confidence in me HAD to have come from somewhere and I'm pretty certain that it came from the way my parents raised me. Although most of my family have NO idea this blog exists and I doubt they ever will, at least someone out there will know that I do appreciate their totally insane & whacked out parenting skills.