“Floating in this cosmic jucsi we are like frogs oblivious to the water starting to boil. Noone flinches we all float face down.” ~Brandon Boyd
Freya’s son is disabled. Nothing at all like “ours.” The problem lies in the fact that his intellect is normal, his disability is physical, and not so big a deal (to us, it is all relative) … but enough that middle school is a bitch. He often eats in the school cafeteria alone, others won’t sit with him. His is bullied to an extent. Freya is a strong woman, does all she can, works wonderfully with the school, makes sure her son has all the services he needs, but what can be done socially? She knows that when she was a teenager, she would have had nothing to do with a boy like this … now she fears he will never have a girlfriend (which, trust me, is not the case), not go to the prom (hell, I didn’t go to mine), etc.
At his IEP today, she made it clear that she would do anything for him to be oblivious to the fact that others react to his disability. He loses it at times crying about how others react to him, how he is treated. She would prefer him to have mental impairments that would spare him the pain of knowing what others do / say / think, than the pain he endures by knowing.
I said “no you don’t.”
I made a very public fight to get Pearlsky excused from the awful No Child Left Behind testing (and won). My core argument was that Pearlsky has NO communication and without any communication, any type of knowledge testing is insane. I also made the argument that Pearlsky does understand what is going on around her and to ask her questions (which the testing demands, even for this population) where she knows you are asking a question, she may even know the answer, but she cannot communicate it, is just cruel. Let’s add to that the fact that she hears how important the test is, how everyone tries to pass, and knowing this, she still cannot answer the question. She knows she is failing.
That is just wrong. (And yes, some speculation.)
Is it better to believe she is oblivious? Do I want Pearlsky to not know she is disabled? Is her world the immediate one yard (one meter) around her chair and no more? Would she be better off? Am I better off believing that Pearlsky has no intelligence, does not know that she is disabled, that others look at her with pity at times, that children point, that adults look the other way? Or do I want her to know? Wouldn’t it be awful if she knows just how disabled she is? What if I word it this way … wouldn’t it be awful if she knows just how abnormal she is?
I wish I was oblivious.
My almost six year old daughter Talia is disabled to much the same degree as Pearlsky, although her (Talia) first three and a half years were normal. My sister and her two year old daughter were visiting one day this spring, and of course the little girl was having a great time playing with the toys that Talia doesn’t pay attention to anymore. At the end of the evening we noticed something strange, Talia looked sad, emotionally upset, my husband picked her up and she began to cry, not the loud mind numbing cry we are accustomed to, but sobbing, deep breaths, tears, and poutty lipped. She then turned her head towards her little cousin and although it was gibberish, scolded her. I was floored, happy, depressed, horrified all at the same time. She hasn’t expressed any emotion since,i but she’s in there still, somewhere, and probably very aware of how different she’s become. I wish that wasn’t such a painful realization, but I wish I knew how to access that part of her and build on it. Yep, I’m with you SD, waiting on that black hole.
Ahhhg. It’s like “choose your torture experience”.
I know that for physical procedures that are painful, I prefer to be out and unaware. But my son preferred to be awake, alert and aware. n
Left a long comment last night and it disappeared. It went something like this:
I was going to send you a reminder that you were on such a roll there for a few days and then nothing. Was going to check in and making sure you hadn’t slipped back into the dark abyss and then, before I went to bed, there you were.
Just yesterday I was speaking to Sophie’s mom, Elizabeth, and we touched on, in a somewhat round about way,this very thing. I had just read a little piece over at,http://www.schuylersmonsterblog.com/,called “Invisible”,and although it applied specifically to our children and how they are or rather they are not, seen by their peers, my instant thought was how we, as their parents are invisible to the world around us as well. Even those closest to us sometimes.
And then there was, how sometimes those closest to us say things like, “At least they, referring our children, at least they don’t understand. Or at least they are happy and content.” Are our children happy and content? Do they really not understand? How does anyone know that? Hell, I don’t even know that.I think about it on a daily when I look at Zoey and wonder, what is going on in that head of her’s.And sometimes, I feel guilty because I wonder,if, in some moments, anything is going on in that beautiful little head of hers?
I too wish that I could slip into the world of oblivion from time to time. Might be nice.
Sorry, Z.M., when a comment has a link in it, it waits until I “approve” it. Some of us sleep in the middle of the night … 😉 Meet you in oblivion … I’ll bring the coffee.
I think Sarah knows. I talk about it to her sometimes. She listens. She prefers only to be ‘out in the world’ just a little bit and I respect that. So I keep her daily life small and she is happier.
That said, I’d give an arm and a leg to know what she is thinking. Sometimes I get the feeling she thinks I am the one with the disability because I can’t figure out what she is trying to communicate. Like, what is wrong with you MOM? Get a clue! lol. Often, she is right. I’m the one with the problem…
I’m generally grateful that Monkey is cognitively “there.” I do, however, wish he were oblivious sometimes.
Case in point: We’re currently in NY for medical treatment. While we were crossing the street the other day, some a – hole started beeping and yelling because Monkey couldn’t walk fast enough to A – Hole’s satisfaction. Keep in mind that Monkey is a kid who is very obviously physically disabled; there is no mistaking him for a “normal” child who is simply dawdling. The ordeal ended with me snarling some choice words at the guy as Monkey burst into tears, his feelings deeply hurt. Wrong as it may be, I really, truly wished he were oblivious to it all at that moment.
I ponder the oblivious questions a lot, like we all do, I’m sure. It’s strange how everything can become a comparison of difficulty. Or that you can be “glad” for some aspects of a child’s disability, but not others. We’ve sometimes been “grateful” for Snail being in a wheelchair, because her awareness of the world and her communication is such that she wouldn’t be safe on the sidewalk or road, etc etc. But is that real gratitude? Not really. More a “if we have to have the shit sandwich, let’s be glad for the pickles.”
Does that make sense, I dunno, I’m having one of those days, myself.