As a parent of a special needs child, I’ve become quirky. That’s right. I know the “ordinary” world probably thinks I have become a borderline “nut-job.” And, guess what? It doesn’t bother me. There was a time I would have cared—Before Caden—my personal B.C. I’ve changed. We all do; it is just that some people cannot comprehend my metamorphosis. I try to find the balance between being the prince’s mom and a professional. But, at some point, those different lives merge. It happens to all of us. So, I have decided to share some of those changes with you….
And the Emmy Goes To…Me. I loved being on the stage when I was in high school. The singing, acting, entertaining—it was something I enjoyed doing. Now, I get to act constantly. This phenomenon was brought to my attention by an arrogant professor who informed me he could tell what I was thinking by my facial expressions. It turns out—he really could. And, I didn’t like him. Nevertheless, facial expressions have become a huge part of my life. My prince responds to them. He sees disappointment—usually after he has knocked over something with a ball. He sees happiness each time he verbalizes. He responds to fear when he is about to do something unsafe. I use these expressions (and more) daily, so they are hard to turn off on command.
I act happy when I see other children doing things that my prince can’t. Sure, I love my son. But, I also wish he would talk, play sports, or care about school. Finding happiness in other children’s success is difficult for me because of the sorrow that sometimes surrounds me. And, you know what? That’s ok! It’s part of coping. You can even find books and articles on it.
The Spanish Inquisition has nothing on me. I first noticed this at Disney World. I had scoured informational websites trying to find the best restaurants, resorts, and rides. But, I still found myself asking a million questions to anyone working at the park. A sampling of these questions were:
“How dark is the ride? Like dusky or pitch black?”
“How big of a drop is it? Are you sure it is 4ft and not 8ft? Like a playground slide?”
“How noisy will it be? When you say ‘not too bad’ do you mean frat party or family picnic?”
“Do the lights dim?”
“Does the beef have onion in it? How much is not much? We’ll take the chicken.”
Yawn. I am physically, mentally, and emotionally tired 99.9% of the time. Now, the prince is afraid of his room. Thanks, Monsters, Inc. and Monster’s University. I thought he loved those movies, and he does. But, now he stares at the closest with wide-eyes instead of sleeping. I remember how much I enjoyed watching things that scared me. Of course, I would have quivered under the covers instead of walking across the dark house to wake up my family. I stress about the prince’s future. I stress because he cannot express himself. I have typical stress. Then, I find myself tossing and turning in bed which causes stress because I can’t sleep. It’s a vicious cycle.
Suck it up, buttercup. My patience runs thin—perhaps this is because I must have so much in my personal life. This is something I do struggle with; in the organizational leadership business we call it compassion fatigue. I struggle to remember that when someone says “this is the worst thing that has ever happened” when Johnny gets a “B” on a homework assignment—that it probably is the worst thing that has happened to that person. Or, their child has the sniffles and they just don’t know what to do—I forget that their child probably hasn’t been passed off to strangers for surgery. I have to remember other people have had different life experiences from mine. However, I often find myself quoting a dear friend and asking myself, “Is this real?”
So there it is…
That’s the new me. If you see me making faces while interrogating someone about the ingredients in a dish at a local restaurant—or worse—asleep in a plate of food, cut me some slack. And don’t worry. I will attempt to show compassion when someone tells me “this is the worst day of their life” when their fingernail polish smudges. But, I will really think: “Buckle up. It only gets worse.” That’s when I will discover I’ve come to work (yet again) with my shirt on inside out.