Even as a child I had the knack for saying what I was thinking. Over time, I confess, I developed a filter; somewhere in my brain a traffic light was installed, and I started paying attention to its cues to STOP!, proceed with caution and GO!!!!!!!!!!!!! Notice, please, that STOP! only warrants one exclamation point while GO is embellished with many…when I stop it’s sudden, and when I go it tends to be barreling through.
J’s appointment for an independent evaluation from a psychiatrist to determine his eligibility for the I/DD waiver is on Friday. I spent the bulk of Sunday gathering paperwork and organizing things so that I turn in everything they requested in a way that is easy to understand. In other words, I went into full-on “order by date, checklist, cross-reference” mode. Like completing the ABAS a few days ago, this process was sobering…maybe even a little soul-crushing. As I was reading all the paperwork, I started thinking “what a grim picture this painted when J was only five,” and then I started chuckling because so many expectations have been blown out of the water in the past fifteen years. A lot of “is not likely to ever” have been turned into moot points.
Out of a rock wall of maybes, not-likelies, hard-to-ascertains we have carved out a niche of huzzah! Our normal is not your normal, and it only somewhat approximates that general standard of normal that the world wants us to believe is the same for the majority. Our normal isn’t, when compared to the basic readers featuring Dick and Jane, anywhere near “normal,” but it’s the norm, the average, the way things are on a regular basis nonetheless.
In an e-mail I referred to someone’s “normal routine.” That the someone has a special set of circumstances that would preclude the general concept of “normal” to be in place is something I need to point out. When you are incapacitated to a certain degree, the Dick and Jane notion of normal won’t exactly apply, will it? People go up and down the stairs on their own two feet, right? “Normal” people do it that way, is the thought that is immediately attached to this, even when when it’s not expressed out loud. So many people have the concept and definition of normal etched in their minds and they cannot veer, even slightly, from it. Normal: dogs bark; rain falls (down…although that’s not necessary to specify because, by definition, things fall in that general direction;) people go up and down stairs on their own two feet. In reality: there are breeds of dog that don’t bark; some howl, and there is the Basenji…it yodels. Rain falls; its movement is downwards…and if rain ever falls up that wouldn’t just not be the norm, it would be downright unnatural. People move up and down stairwells in many different ways; even before the advent of the elevator, people who were incapable of propelling themselves with their own feet and legs were carried upstairs. Normal is the way something is done on a regular basis based on particular circumstances, and I know that’s probably a rather broad or lax definition, but I know enough to know that this is a fair assessment.
The reply to my e-mail regarding a “normal routine” was replied to with what I know (because I know the person oh-so-well) was a too-clever-by-half attitude: “normal? Ok, I’ll say nothing…”
The little traffic light in my brain flashed red, then yellow, then both, then I stepped on the gas and told myself GO!!!!!!!!!!!!! I didn’t so much proceed with caution as I worded my response with more diplomacy than I was inclined to exercise: for every situation there is a “normal” even if it doesn’t subscribe to the “norm” you recognize. Case in point: we have a “normal” here that works for us, even if it doesn’t work for others. I get the feeling that my response was/is/will be pointless because the backtracking that might/could follow is par for the course; I hear a “oh, I didn’t mean…” coming on. There always is one.
The thing is this: you can’t say the snarky thing and expect me not to call you on it, and then (as I type the response pops up and it’s more of a “yeah, I understand it’s all relative”) pretend like you didn’t mean the snark. The family circle I belong to is composed of a population in our fifties (some farther in than others) and sixties, and our children (or the upcoming wave of alphas) is in their early-thirties and twenties; we even have grandchildren, for crying out loud. We cannot pretend like we don’t -by now- understand the concept of normalcy based on circumstances. My oldest brother had a catastrophic thing happen to him, and his life’s entire framework has been altered by it; no one would dare not call his situation “not normal” because his intellect is unchanged. But the moment a person is somewhat impaired in a cognitive way, “normal” flies out the window; you can’t lead a “normal” life if you can’t reason through it like the next person.
A lot of the things I’ve read about J in the paperwork accumulated through twenty years of being his parent tells me, in glossed-over terms, that he’s not “normal.” That’s the way we define things and people in this world, and there are those who say “let’s call a spade a spade…that’s not normal,” and refer to “ordinary” and “extraordinary” as euphemisms. I have witnessed eye-rolling when I’ve used the expression “neuro-typical.” People argue with me that there is no such thing, and that the Autism community has come up with it to alleviate some of the stigma. What “neuro-typical” implies is that there is an implied exclusive legitimacy in how the non-autistic experience the world, and -like “normal”- it means to somewhat reduce the validity of other people’s experiences.
That sounds horrible, doesn’t it? Yet, in my experience, it feels true. (Notice, please, that I use the word “feels”…it’s something that I personally believe, and that doesn’t mean it’s correct.) When someone sets expectations, standards, or issues questions and opinions about normalcy they are basing this on their own experience, and they are assuming that this is THE correct experience, expectation, standard, opinion, parameter. In that sense, no, J will never be “normal” and I don’t think he has ever been expected to be by anyone who evaluated him, but -gosh darn it!- we’ve yet to see rain fall UP around these parts…sideways, yes, BUT the wind was blowing quite fiercely…
Good thing I’ve never wanted to join the diplomatic corps, huh?