All Too Aware

It’s easy to feel jaded about Autism Awareness Month when your child is 21. It’s redundant. You’ve lived, breathed, and been consumed by autism for years, so when your special month rolls around you just feel numb. At least that’s what you tell yourself.

I’ve dodged the blue lightbulbs and puzzle pieces for a while now. I celebrate new research, but eschew the activities that accompany this special time of year. It reminds me of Christmas. Some people are gleeful when it finally arrives, others are depressed or feel pressured to enjoy it.

I’m crazy about my son just not about awareness month. I thought I would remain indifferent about all of it until recently. I gave a TED talk a few weeks ago where I took material from a play I wrote in 2008 inspired by my child, and mashed it up with material from Driving Miss Daisy. The talk addressed racism, ableism, discrimination, empathy–The Other—and I presented it with three other actors. I had to stop performing the full-length years ago because it was emotionally draining. I knew I wouldn’t have a problem with this talk however, because it was short and similar to one I gave in 2010. Save for a brief monologue at the end.

I started writing the original play when my son was seven. We were busy “fixing” him at the time, and even though I was overwhelmed and insecure I had faith he would get better and lead a healthy, independent life. But I’ve learned to manage my expectations at this point. Josh is still severe. Without the benefit of a medical breakthrough, or a miraculous stem cell operation, or extreme advances in the way I pray, he won’t experience the life I’d envisioned. It never occurred to me how prescient my writing would be. Many of my fears about his future have come to fruition. I used to joke that I needed to live to a hundred to ensure his well-being and safety. Today I am just relieved and blessed that Josh is happy and he senses how much we love him.

I typically bring that love with me when I perform. On the evening of the talk, when it was nearing its end, it was finally time for my character to recite the final monologue. I had relaxed into the piece and started breathing. I looked away from the audience like I typically do to deliver the mother’s lines. She’s pretending to whisper to her young son, trying to guess what’s in his head. Suddenly, when I was looking down and speaking to this imaginary boy, every memory of Josh and his childhood exploded in my brain. Flashes, momentary eruptions, of Josh at the pool, Josh having a rage, Josh having a seizure, Josh at his work table, Josh in the bathtub, my husband and I fighting, my daughter swinging with him, me crying with him, me lying next to him in his car bed, Josh having an EEG, a blood transfusion, a brain surgery. I could feel my throat tightening and my eyes burning. I was used to channeling my son onstage but this was different. This mother was still craving normal.

Then the monologue was over. I had to tuck myself back in. I pressed my lips together for a minute so they wouldn’t quiver. I felt my nose running. After we took our bows I stepped offstage for a moment to release the pressure.

I was tired after the conference, but sometimes exhaustion bares secrets you’d rather not admit to yourself. It hurts that it doesn’t matter what day, week, or special month it is I still have the gnawing desire for my son to hug me back when I put my arms around him. I still wish he could tell me what he was thinking. “And I dream that one day he will look me in the eyes and say, I love you.” I am not indifferent or numb. The longing will always be there, and I’m all too aware of it.

There But For The Grace of God Go I

Because my spring and early summer were rough I completely skipped Autism Awareness Month. I didn’t put out the blue light, I didn’t write anything, I didn’t care. I’m going to post something now—six months later—because I do care, and I want to acknowledge the month. I wrote this short journal essay almost fifteen years ago. My family and I have come a long way since then. . .

There But For the Grace of God Go I (2001)

I firmly believe that my son and family provide a service for other families. And we really don’t have to do much . . . but exist. Our struggle with his severe autism makes people feel grateful they’re not us. We strengthen marriages, provide a shining example of what not to expect when you’re expecting, and we shed light on the true meaning of dysfunction. It’s funny, (not really) when I’m having a conversation with someone and they’re bitching about all the petty stuff going on inside their home–maybe their kid stepped on his retainer, or the air conditioner went out, and then I suddenly sense the eureka moment. The Look At Her It Could Always Be Worse moment. They don’t have to say anything. I hear it in their uncomfortable silence, and it doesn’t bother me. Really it doesn’t. I’m gratified when my family members or random grocery shoppers or airline passengers breathe a sigh of relief after they’ve observed my non-verbal, “testy” child crap on the floor or scratch my skin off in public. A sigh of “There but For the Grace God Go I” relief. I’m grateful that in some small way I’ve made a contribution to somebody else’s well being. My life makes them feel lucky.

Now, what I don’t like is the silent treatment I get from friends. I need to hear about all the shitty things they’ve gone through that day. They don’t have to feel guilty because they couldn’t possibly have it as bad as me. Please– people have it as bad and much worse. Everybody has something. Everybody. I am still your friend and confidante aren’t I? Nothing’s too “trivial” for me. Don’t make me feel worse than I already do because you don’t think I can help you. Or listen to you. Tell me what’s happening in your life. I WANT to hear bad things. And good things too. Please provide me that service. It’s okay to be happy around me. It makes me feel human again.