Susan's Blog

Saturday, November 25, 2017

Stop talking about him in front of him.

What is it like for Nat to have people talk in front of him about him? Even when they are being kind, loving — wanting to know what this gesture means, what is he trying to say — it makes me so sad for him that others talk in front of him. It makes me angry at myself for not being able to break apart from the interaction and tell these others that they should not talk about Nat in front of him; they should talk to him. What is wrong with them? What is wrong with me that I cannot stick up for him when I should? I’m so much more worried about destroying the otherwise pleasant interactions in the room? I hate myself for not being able to say it.

Sometimes I do, though. Sometimes I say, “ask him.” Sometimes I say, “leave him alone.” Sometimes I say, “he’s right here!” and I smile to soften it, to not embarrass them too much.

Other times I lead by example. If they ask me “blah blah blah why does Nat blah blah blah?” Or “Would Nat like blah blah?” I say, “I don’t know, hey Nat! Do you want blah blah?”  Or if Nat cannot answer because somehow the words are stuck somewhere — I hate sticky words, I could just kill them — sometimes I say, “I think you probably don’t like that, Nat?”  I go with my instinct of what his answer might be, and I include him that way. It’s the best I can do.

Why can’t others do their best? Why are people still so clueless about this? Is it because I do not explain this every time? Why is it so hard to act in the moment, particularly when my own dear son’s personhood is being distorted?

I look at Nat when he is not singing, when he is not the star up on stage — I haven’t written about this, but he has joined a band and now sings! He is so happy up on stage. Never happier. This band is like Special Olympics is for him — it is a big beautiful world that opens wide for him, accepts him, teaches him even more, and then is awed by him. This is the opposite of what we get from the others mentioned above. Those others do not know the Nat on the stage. They don’t know his sharp bright smile, his intense focus, his adult body language, his charisma. His bandmates do. The other parents do. The teachers do. The audience does.

But what about the majority out there who does not see him sing or swim? They see my pictures of him, if they even give that much of a shit, but is that enough? Evidently not. They still must patronize him. They leave him out of his own conversations. They don’t see him. They don’t know him.

This ignorance, this dismissal is the very thing that first forced me to write about autism. I was writing about Nat because I knew about Nat. I knew how much real human space he takes up in this world, and I know how some do not see that, they don’t see him. It kills me that they see so little. That they see a two-dimensional Nat. I write in the hopes of making Nat and others like him visible, real, human, three-dimensional. I write so that you people out there who speak in front of him like he’s not here will open your eyes and maybe shut your mouths. Let him speak. If he’s silent, then he’s silent. If his speech comes through his hands, his gestures, his expression, his closed eyes that just cannot look at you the way you need him to.

Like Nat, I just cannot always speak up. So I need you people out there to do the right thing and talk right to him.  Nothing about us without us? Nothing about us without us especially while we are right here with you in the room!

Oh, and one more thing: try asking him about his day, his jobs, his band, his favorite activity. Wait for an answer. Repeat if you don’t get one. But please, include him.


I hate that which is why I am so careful when I help with lunch at the hospital . Everyone deserves a chance to speak and do for themselves . One day if we live long enough we will be a “Nat”. Saying that , when it is necessary I will speak for him so he is heard, but otherwise I will not do so .

Mine joined choir this year. He’s enjoying it.

— added by Farmwiferwo on Sunday, November 26, 2017 at 9:08 am

Beautifully said Susan. “Nothing about us without us.”

— added by Steve Kieselstein on Monday, November 27, 2017 at 8:16 am