It’s so many things right now. I’m constantly fighting fatigue. Having difficulty focusing. Feeling like very little is being accomplished on my long to-do list. It’s the searching, hoping, praying, collaborating with doctors, and teachers, insurance companies, and therapists. It’s the walking on eggshells, the barrage of negativity surrounding me, the field of landmines I walk through daily, trying not to trigger an explosion. It’s not natural. It’s not human inclination. It totally goes against the grain of “fight or flight” that we are inclined to do when we feel like we’re under attack. It’s the maintaining control because he’s out of control. It’s the loss of the dream that he would be my easy child.
You see, his light shines so brightly. There is so much intelligence and so much love in his heart, so much kindness and — yes — empathy. He is the one who I KNOW for sure will be all he can be. He is the one with the internal motivation. He is the one who wants so much to help others. He is the one who already has goals of getting a Masters Degree and maybe a Ph.D. I mean, who talks about that when they’re 12?
He is the one who use to be the attorney for his brother when he was acting out. “Mom he doesn’t mean that. He’s just trying to… Don’t be angry with him.” He is the one who said, “I don’t want to turn into one of those disgusting teenagers, who curses and disrespects their parents.”
He’s the one who is this wonderful artist, this deep thinker, who always thinks outside of the box. He’s the one who wrote this wonderful essay, Freaks Geeks & Aspergers about autism acceptance. He wrote this piece of his own volition, just a few weeks ago, and read it on the P.A. system for the entire school to hear. He is the one who gets notes sent home about what a wonderful student he is, and what a great leader he is.
And yet, right now, he is in such pain that it’s palpable. He’s falling apart, yet he’s wound up tight, like a sling shot. He clenches his fists. His body trembles with anger. He’s a stick of dynamite with a short fuse.
So, I speak softly. I indulge him. I try to make him more comfortable in his own skin. I attempt to surround him in a protective bubble, keeping him away from the triggers as much as possible. It’s a lot of work! And it’s feels like all for naught.
I lay in bed next to him, trying to massage the stress away with lavender oil and a soft voice of reassurance. He turns around and starts biting the sheets, to show me, “What you are doing is not working. Just leave me the fuck alone! I’m miserable! And you can’t rub it away with lavender oil or Gaba cream!”
“I’m working on getting you a new therapist who really knows Aspergers,” I say.
“I can’t do it! I can’t do anything. It won’t work. I can’t start anything new right now. I’m tired of this. I’m tired of feeling this way. Nothing helps! I want to feel better now!”
And with that, the tears well up within me.
“I just need to be locked away from people! I can’t go to school like this!” he says.
That’s it. The tears stream down my face. I lose my voice. I cannot speak.
I hug him. He feels my tears on his shoulder.
“Don’t cry, mom. I don’t want you to cry. Why are you crying?”
“I just want to make this better for you and I don’t know what else to do.”
He can’t handle my emotion. I can’t control it, although I try.
He asks for his father. He needs someone who will stay in control right now. He needs someone to help him understand. Why in the heck is mom crying?
I am crying because in this moment, I feel the loss of the dream. The dream that he is the one — the one who doesn’t have the problems like his brothers. Red, with his autism, anger, outbursts, and difficulty with school. Slim, with his anger, intelligence, and dumb life choices.
But alas, Blue is not perfection personified. He is human. He has autism, anger, and anxiety. He is a teenager, and he’s got crap to deal with, just like the rest of us.
As I tell him, I also have to remind myself:
I don’t have the magic answer
I can’t snap my fingers and make this all go away.
It’s not the loss of the dream.
It’s just life.
It’s a dream deferred.
About the Author: Karen is the mother of two teenage boys with Asperger’s. This piece first appeared on her blog, Confessions of an Asperger’s Mom, and is reprinted here by permission.