Susan's Blog

Thursday, May 24, 2012

You means I

Yesterday I mentioned that I want to write a new book, which would almost be Nat’s memoirs of the past few years, as imagined by me. I see the past few years of his as a time of immense growth, and I’m fascinated by it. The things that fascinate/bother/anger/sadden me are the best places to start writing. I am intrigued by Nat’s communication development, and his centered approach to things. I just finished a book that has given me a way possibly to write about this in novel form.  A Turn of Mind, by Alice LaPlante, is about a woman with advanced Alzheimer’s, who is accused of murder — and she doesn’t know if she did it. The entire book is from her perspective, her thoughts, which go in and out of clarity, but are always about something. Thus we piece together what happened, and we get to know Jennifer, the main character as well.

This is the way I want to write the book about Nat, which I’m thinking of calling You because that is Nat’s form of first person. Thinking back, I see the change in Nat starting with his 17th summer, when he went off to Extreme Sports Camp in Aspen. This was how the blossoming began. And ironically, this growth occurred during a particularly difficult time with Nat. In fact, things were so tough at home those days that we had begun planning to transition him to the residences at his school. Ben was living in fear of Nat’s outbursts (screaming, jumping hard, hitting). I felt like I couldn’t trust Nat anymore; so many things bothered him. He would ask questions over and over and we would answer over and over and it never seemed to help. His school’s advice was to redirect him, answer only a few times and then tell him we were going to talk about something else. But this frustrated him. He had to hear more of it. Sometimes explaining the things again and again did help him calm down. Other times they seemed to feed the fire. Why?

I don’t know. But Nat went away, first on his amazing week in Colorado without us, and then a year later to the house near his school. The year in between had its hellish parts. More and more of the questions without end, without satisfaction.

Until we figured out that what he was doing was telling us that something was out of whack; a break in a routine, a light not going on, an i not dotted. The repeated questions/statements were not because he didn’t know something but because he didn’t like something. And the answer didn’t satisfy him, didn’t set it right.

Somehow we figured out that we needed to tell him that the thing bothering him was indeed going to be rectified at some point. I started to feel a little bit happy to explain, rather than anxious to quash the question. I felt happy because I saw that it worked; Nat listened to my answers, watched my face, and learned to trust my explanations. It began to be like just about anything I heard him repeating, I would listen to carefully, try to find the decipherable word as my clue, and think-think-think what was it about that thing that could be bothering Nat? Like the time at the supermarket when he kept inserting the word “bag” into his self-talk phrases. We were in the car and I became aware of “bay-ag, bay-ag,” and my mind flipped through the possibilities, and seized upon the cloth bags that I had used instead of plastic. New bags! Wrong routine!  Solving puzzles has always been fun for me, and so I kept my fun feeling with me as I explained to him about how it wasn’t good to throw too much stuff away, like bags.

I think that the small happiness I felt, even with anxiety over his outbursts swirling around, was like the eye in the storm, and it transferred itself to Nat. He could probably sense that I had gone from “Argh, stop the questions! But don’t get upset!” to “Hey, I know what you’re asking about! I can explain that to you!”

And the final flourish I added was to say, “Okay, Nat?” when I was through. Something about that check-in also gave him comfort. Was it because he knew I cared what he thought, that he understood? Or was it that it provided a nice bit of closure to our conversation? It doesn’t matter, because it “worked.”

And so I’ve been thinking about starting there, digging deep into events that happened when he was 17, in 2007, and imagine the thoughts in his mind, the feelings colliding with our actions towards him, and where those feelings went, what they morphed into. Then, also, the first moment he felt that I really wanted to help, rather than stop, him. What did that feel like? How did his thoughts look? What did he notice?

This is, of course, going to be a novel, because I can’t ask Nat directly to get the answers, to be his biographer. At least, not yet.


Bless you for this post. Portions of the post describe so well my daughter’s speech patterns, agitation at times. I have struggled with how best to respond to the her questions or statments that I’ve heard for the 100th time in a 1- 2 hour period. Should I reassure, should I ignore, would my words/actions make things worse this time or better? What is that magical combinations of words from me that would allow my daughter to feel heard, acknowledged, comforted and able to move on? My stomach churns with anxiety because as a mom, to feel unsure or unable to help my daughter through her un-happiness/agitation was a painful thing. Things have been better in the last two years. My daughter has moved to a group home with peers that provide more balanced social interaction for her instead of just family. I believe the unspoken desire for independence and a life with peers was behind many aspects of my daughter’s agitation. I have also learned better skills to calm and ground myself first before I respond to my daughter when she is going through a period of intense vocalizations. When she is calm I tell her: You are a special person. Your feelings are important. The things you say are important. I understand you. We will work things out. Thank you again for your post.

— added by Row Beatty on Friday, May 25, 2012 at 11:08 am

Have you looked at linguistics professor/autism mom Olga Bogdashina’s works on autism perceptions and language?

— added by Sarah on Friday, May 25, 2012 at 3:24 pm