A Dream Deferred

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.

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5 Responses to “A Dream Deferred”

  1. Devon Alley says:

    Thank you so much for sharing this. My daughter (who is autistic and will be 13 in August) is going through a very similar struggle, and I have felt equally overwhelmed on how to help her. It’s comforting to know that we are not alone. <3 I do hope things get easier for both of our amazing kids soon.

  2. Jean Carroll says:

    Wonderful snapshot of life with autism.
    My little boy is 8 and it breaks my heart when he cries and I have no idea what’s upsetting him.
    Your kids are so lucky to have you as their mother.
    I think that even when we can’t reach them, we can always let them know we love them XXX

  3. Ashmire says:

    Puberty hormones make everything horrible and as though the world is coming to an end, or worse. But they do go away. Even NT kids get suicidal alot in those years, I gather.

  4. AB says:

    I wish I could tell your son that it’s going to get better and have him believe me. But being a child and teenager was absolute hell for me too, and I mostly hated it when people told me things would get better. What the hell did they know? (They were right, of course, but it took getting me on antidepressants first).

    I wish you both strength. I hope he finds a good close friend or two– that was what made the difference for me, made the pain tolerable. I had a wonderful mother, a good home situation, and as privileged a life as you can get while being lower middle class… but at age 13, the thing that made my life endurable was when a girl sat next to me at lunch and told me she, too, sometimes wondered if dying wouldn’t be better than living.

    You’re both in for a hard ride: from what I hear, the only thing worse than being a teenager is parenting one. Hold on tight to every good thing. Remember and treasure every laugh, every silly moment, every beautiful detail. Let the good times sustain you through the bad. And know that it will get better.

    Your son is lucky to have you. And he sounds like an amazing guy. You’re lucky to have each other.

  5. Karen says:

    Thank you so much it’s great to here these words from someone who has been through it and came out on the other side