September 25, 2015 Leave a comment
Last Friday, I woke up and decided I was going to dress for comfort—not that I ever dress formally for work anymore. I’m usually a khaki and polo kind of prof. But last Friday, I reached for the jeans and a t-shirt. Not just any tee: if I were to make this a real casual Friday, the shirt needed to say something.
So I reached for the one that advertises the campaign associated with Special Olympics, the one that says “Spread the word to end the word.” The word is “retarded.” Wearing the shirt gave me the opportunity to step up on my trusty soap box and make a few points about being better people. As a biologist, I get little opportunity to officially step outside the neutral observer/pure objectivity box and talk about things that mean a lot to me.
This movement has been around for a few years now, and I really appreciate the message. The idea is to suggest to people that we should eliminate the casual use of the term “retarded” and its cognate forms such as “retard,” with the accent on the first syllable.
I am not the PC police by any means. But the message of showing respect to all people has been slow to encompass those with intellectual disabilities or developmental delays. It is almost as if they remain among the last segments of society that it is acceptable (in some circles) to make fun of.
I know I have written about this issue before on numerous occasions, usually bemoaning the plight of people already burdened with dealing with difficulties that the average person on the street knows nothing about. But today, I am encouraged by the acceptance of that message of tolerance and appreciation among the young people in these classes. So many students in the three classes I shared this message with today nodded in agreement. Some looked a little ashamed when I used the word as many people do without thinking about it, whether as a self-deprecating comment or to chide a friend for some misstep or mistake.
I sincerely believe that most people who use this word casually mean absolutely no harm by it. They do not intend harm toward a person with an intellectual disability. But they fail to think about how that sounds to someone with such a condition.
I admit that there were times in the past when I used the word in unthinking ignorance. I had heard it from others, it seemed to express an idea of deficiency, and I would just blurt it out.
But times change, and people change. Especially when life changes your situation so radically that you never saw it coming.
When you are faced with the reality of being responsible for a child with a disability—in our case an autism spectrum disorder—everything that you had the audacity to hope and plan for is suddenly deflated. Relationships in the family and outside of it are strained. You feel like a victim and you ask that never-ending question, “Why me?”
As I have acknowledged before, I now realize that that question is the wrong one to focus on. I am stressed, as is my wife (and our daughter) in dealing with our son. But self-pity for having a life marked by dealing with unpredictable behaviors and never-ending therapy appointment is pointless and counter-productive. Finding strength and determination to help him overcome what sometimes seems like insurmountable issues is a Herculean task, but one that must never be abandoned if he is to have a decent chance at a future.
Still, there are times when I am angry with God for the hand he has dealt us. I feel isolated and alone and drowning at times, especially when I sense that people think I am shirking my work or church responsibilities for lack of participation or attendance. After a number of incidents at church, I learned that unless or until we have some of these unpredictable behaviors in check, I cannot afford to expose him to too much stimulation. I cannot leave a boy who is big for his age alone with his mother so I can put up a good front and wave the company flag. Thoughts like, “If God wants me to be there every time the doors are open, then why doesn’t he make my son improve at least enough to allow it? Why doesn’t he help him to control his impulses and behaviors so he can at least not be a distraction or worse, a hazard, to everyone else?”
As much as people want to be understanding, they can’t know the stress that is so much a part of my life that I don’t even know what it means to relax anymore. Being constantly wound tight like a coiled spring under pressure, straining to break free—that doesn’t quite do it justice.
But maybe someday. Maybe he will respond better to the medications that are supposed to keep him on a more even keel. Maybe he will benefit from the full spectrum light we shine on him when he wakes up. Maybe he will stop being so contrary in the evenings. Maybe he will reach a point where we can let him outside to play without fear of elopement. Maybe someday, we can take him to a store and actually check out with what we went for, rather than being distracted by watching to make sure he doesn’t run away or lie down in the middle of an aisle in a meltdown. Maybe someday.
Until then, there is the progress being made by the public in their understanding and acceptance. That’s one burden, one stressor that is loosening its grip, even if ever so slightly. But every modicum of relief is welcome. And while we will never know the same normalcy that others take for granted, the brief moments of relief may become more frequent, coalescing into their own modified reflection of the mean experience I would so love to enjoy.
For now, it is what it is, and it is enough.
But in some ways, I suppose we have more than many may have: for all his difficulties, for all his stubborn unwillingness to cooperate at times in even simple tasks like taking a shower or brushing his teeth, there are times when out of the blue, he blurts out, “I love you, daddy.” And he means it. It was on his mind, and while his lack of impulse control may be maddening with respect to any number of daily events, this one is welcome.
“I love you, too, buddy.” And I mean it, too.