A Rambling Note to the Lot of You

Maybe I should talk more about the dark side, the hard parts, the struggle…

I make light of a lot. Partly because I look for the humor, partly out of fear. The truth is like the rest of you, except for the few palm readers we keep around for good measure, I have no clue what the future holds for myself, for my son. In the back of my mind, I’m always thinking about the hard stuff– growing up, independence, adulthood, puberty, relationships, jobs. It’s all swimming around back there. I could white knuckle the steering wheel everyday, waiting, anticipating, worrying. What if it gets bad again? What if it’s worse than before? What if he’s 6’4, and I can’t manage him? I could spend my life there– worrying.

I remember days where my thoughts swirled around one central theme, “I can’t. I can’t do this forever. Will it always be this way? Will he never understand? Is this the rest of his life? My life? Is this autism?”

There were a lot of tears, tantrums (his and mine), sleepless nights, and I just wanted it to go away– whatever it was… Maybe it was autism. Maybe it was the not knowing, the heartbreak, the sadness. I still don’t know what IT was, but I do know IT ruled my days for a long time.

Slowly, I began to reclaim little parts of myself, the truth I knew before autism. What truth? There’s no guarantee I will see my son grown. Any number of things could happen at any given time. To spend my life worrying about things that may never come to pass is a waste of precious time.

I remembered the mother I wanted to be, and while I gave up some of the small battles I thought I would wage– being fully clothed ALL the time, licking the ground, touching garbage cans, you know, shit like that– I remembered the big things I wanted for my child– to be content, comfortable in his skin, happy with himself. While autism presents challenges, those dreams are still present.

I suppose I don’t write about the dark side because I figure you already know about it. Why take you there? I’m certainly not the only parent who has these thoughts. It’s a second job for all of us. Reading some of the comments today broke my heart, made me grateful. I wanted to sit next to you, share that cup of coffee or tea or wine or bourbon in silence, and just exchange energy…

Much love to you all in this rambling note….




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