One of the Dignity Revolution’s most beautiful writers, my friend Susan Senator, posted a poignant blog post on Cognoscenti.WBUR.org today. You may or may not know that Susan has a 23 year-old son, Nat, with autism. She writes often about Nat, autism, and a wealth of topics, and she is always elegant, thoughtful, insightful and has an innate ability to make emotional connections with her readers in a way few can.
Her post today was one of her best. I was riveted, so I want to share it with you. I want you to read it on Cognoscenti, the publishing blog, so I’ll just post a bit of the highlights. In short, Susan begins by admitting a mixed bag of emotions, including jealousy, after seeing a mom, Virginia, and Elizabeth, her daughter with autism, share their story of success through a TEDMED talk that highlighted a communications breakthrough that Elizabeth had. Susan then begins an introspective breakdown that I know captures the feelings of many parents.
I also felt rapt and moved to tears by Elizabeth and her mom. Elizabeth’s first typed word was “agony,” and her first sentence was “I need to talk,” at age 6. Before and since, she would storm and tantrum and hit herself and rock, like so many people on the autism spectrum. So Elizabeth looks far more “lower functioning” than she actually is (because her typed sentences and poems and high IQ score show this). One of her most compelling responses to the question, “How did you learn all this?” was “I am listening.”
I am listening. Elizabeth’s sentence blew me away. This what so many autism parents like me believe about our own children, but forget. We forget it every single day, because we see so little of the evidence we need.
I’ll admit to it. I often talk about my son Nat — who is 23 and has fairly severe autism — in front of him like he can’t hear. I make decisions for him all the time, from guardianship-type of issues to what color green to use for his bedroom. We all make big efforts to include him in his own life but it is not possible to do so as often as we should because we just cannot get reliable answers from him.
Nat has certain default responses, Nat does know how to type and his sentences are very small and basic. He takes perhaps three times as long to remember what to type after, “Hi, how are __?” When we type together, I watch him, whispering softly to himself, thinking his own thoughts, perhaps collecting them so that he can finish his sentence. I watch and I wait. I do not want to prompt him, cue him, fill-in his blanks. I want his thoughts to be all his. I want him to have that, at least, in a world where he gets to decide so little about his own life.
Please take a moment to read the entire post here. Then reflect about what we can all learn by occasionally taking a moment of pause to recognize that each of us has value to offer. Sometimes, we just need to work a little harder to listen.