"Negro" was once a term to describe black people in a neutral manner (which may in and of itself not be entirely accurate, but the origin of the term is beyond the scope of this entry), but became highly charged and is no longer acceptable to use to describe African-Americans.
"Gay" was initially commonly used to mean joy or happiness, then associated with homosexuality, and then negatively to indicate something stupid or ....
"Retarded," which medically means stunted or having not reached its typical (or "normal") potential. Negatively, it connotes an insult toward people with special needs, and is commonly portrayed as a school-yard insult, used among kids who are still trying to establish their own social pecking order.
These are some of the common examples of words that simply should not be used anymore because of their negative connotations. However, even words that are typically interpreted as positive can also bear a little backlash of their own. "Normal" seems to be one of those words.
What is normal? Generally, it's the definition of the baseline of our environment, an average of sorts. What is common. As a baseline, there are elements or data points that can be above or below that line. A person can have above-average athletic ability, average athletic ability, or below average athletic ability. That average is defined by the commonly occurring traits within the sample population. That sample population is whomever the observer chooses.
In most cases, we the observers choose the world around us.
We have ideas of what constitutes "normal," in terms of ability and behavior. Anything that deviates from those norms become cause for concern or attention. That concern or attention can either be helpful or harmful, regardless of the intent of the individual. When it singles out someone as a result of that deviation, shining a spotlight on that person as if on display, that person is subject to more than regular scrutiny.
It can make a person feel different, outside of society, an outcast. Not normal. Not average.
Years ago, although political correctness is derided by those who typically display more selfish (or perhaps lazy) behavior by being obstinately resistant to altering their vocabulary, PC speech dictated that we should replace "handicapped" -- with its negative connotation of being inferior -- with "challenged."
"Challenged" indicated that a person was otherwise the same as you or me, but had an additional "challenge" to overcome, like that last field goal attempt or knocking down that 7-10 split in bowling.
However, even though the terminology changed, it didn't change the underlying condition it was meant to describe or that condition's connotation. "Challenged" was still an indicator of a condition that's commonly seen as a disability or inability, in the grand scheme of things. "Gay" is a more acceptable term for those of us who are more enlightened, but for those who cannot reconcile that homosexuality is real and deserving of equality, it's still an epithet.
"Challenged" has therefore lost its meaning as a positive alternative to "handicapped" or "disabled." As an aside, I've even heard the term "differently abled," which even for me is going too far beyond putting positive spins on words and terms, and straight into pandering and patronizing.
So now we come back to "normal." In the special-needs world, we don't like to call our kids "normal" or "not normal," whether it's in what they do, how they behave, what they comprehend, what they can do or say. It implies that our children are deficient in some way, which is the same theory behind the R-Word movement.
We use "typical." It described the situation in more statistical terms, rather than in terms of acceptability. Going back to the introductory scenes in the movie 300, Spartan children who were found to be deficient in some way were discarded and left to die. Despite its dramatization, it served as a clear delineation between such warrior cultures and ours.
Henry was not left to die at the bottom of a canyon. Despite the fact that, and not to mince words anymore, he's not "normal."
Henry is a 2-year-old who is the physical size of a small 4-year-old. His cognitive abilities, perceptions, and reactions are akin to a 6-12-month-old. An impolite society might label him retarded, intellectually disabled, mentally handicapped, and so on, as a result of Fragile X Syndrome.And yes, it did churn my guts to commit all of that to writing, even if it was to make a point.
So to rephrase it, Henry is not a typical kid. He's in a different place, and he does have special needs as compared to other children his age. And that variation from typicality is indeed a challenge, not just for him but for us as parents as we try to balance his needs given his physical and intellectual stages with the need to get him out into the world and not just closeted away inside our protective home behind intangible barriers.
We have to pick our battles when talking about our kids to strangers or passing acquaintances. Most people aren't interested in Henry's development stage, so they may see what they think is a 4-year-old...then wonder why he's still in diapers and doesn't speak. 3- and 4-year-olds at parks and playgrounds want to play with him because he's the same size as they are, but they don't understand that Henry is much younger and doesn't have the social mechanisms in place to comprehend them. Other parents and grandparents may provide well-meaning advice that simply doesn't apply, and I have to quell the urge to correct them or engage in explanation that would ultimately become uncomfortable for them (and again, picking my battles).
But then there's Evie.
Evie seems to be more on track in her cognitive and intellectual development than Henry was at her age. When she was about 7 months old, she was already picking up small bits of food in her hands and putting them in her mouth. Henry didn't start feeding himself until this year -- early this year, in fact. He was about a year and a half old by this point. We'd actually been worried that because he was so far back in self-feeding, we had panicked paranoid visions of this kid never being able to feed himself (and then he surprised us by starting without any warning or lead-up).
Evie's desire to crawl and the comprehension of the mechanics of crawling is far ahead of Henry's equivalent stage in development. She's eating solid foods much earlier then Henry did. We had transitioned Henry to "adult food" fairly recently. He began crawling on his hands and knees recently. Evie is already slowly working up the strength and coordination to get onto her knees and support herself with her hands.
In other words, she seems more "normal" than Henry and that's where I find more traps. First, I have no idea what a "normal" kid is or does. So I have no frame of reference other than on-line resources and innumerable baby books, pamphlets, and brochures. Second, I cannot jump too far ahead in assumptions that Evie is "typical," because that can be one foot into the pool of denial. It can also lead to a tendency to focus more attention on Henry than on Evie because we'll think that Evie needs less of our help.
Words can hurt. That cliche about sticks and stones is a nice theory and all, taught to children with the goal to toughen up and pick battles rather than getting upset at everything that comes along. But that's not true. Words can indeed hurt (and don't even get me started on that "I'm rubber, you're glue" nonsense), especially when used carelessly or without regard for context, environment, and even tolerance of your audience.
I struggle with the word "normal," because its use implies that my children aren't, or that they're deficient in some way. And maybe in the eyes of society, they are. Maybe we are fortunate that we don't live in Frank Miller's Sparta. But for us, this is normal.
It's hard, yes. But that's what we have, and that's what our baseline is. It's often reaffirming and comforting because we get so caught up in our own world of special needs, FXS, possibly autism, when we find out that our kids' behavior is actually exhibited by countless other children their age (thus, "normal" or "typical" in a greater perspective). We feel like we're constantly doing something wrong....but then we find out that every parent feels that way.
This seems to be our "normal."
