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.

6 thoughts on “There But For The Grace of God Go I

  1. jimmitro October 26, 2015 / 11:11 am

    This is outstanding! You have a special wit and sarcasm that reminds me of Nora Ephron. I hope that life has gotten a little easier since 2001 with the exception of spring and summer 2015. May your writings enlighten others and give you a creative outlet!!


    • Shelley October 26, 2015 / 3:29 pm

      Thank you for your comment, Jim! You certainly know what a challenge looks like . . .


  2. Christopher October 26, 2015 / 12:48 pm

    Your desire to hear the difficulties in other people’s lives reminds me of the way people deny a gift from someone they believe can’t afford it; however, that not only is judgmental, worse, it denies the other the joy of gift-giving… Thank you for sharing such great insights…


    • Shelley October 26, 2015 / 3:20 pm

      Thank you for understanding . . .


  3. Helen October 6, 2016 / 7:58 pm

    Have worked with special needs and Special Olympics. Have you heard of Cannabis oil tbd oil for seizures. Young child from. NJ had hundred of seizures daily. Went to Colorado and used a can Avis cocktail. Cut her seizures under 5 a day.


    • Shelley Stolaroff Segal October 7, 2016 / 4:38 pm

      Nothing has worked for Josh so far, inluding the oil, and he’s had two brain surgeries. However, we’re getting a dog in Feb! Thank you for your comment, and for the work you do.


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