09 April 2012

So yesterday, Julia was having trouble doing what her therapist told her to do. She got angry, the therapist suggested she take a break. Julia agreed to take a break and asked to take it in her room which is unusual. Her therapist agreed to the request and Julia marched upstairs, went into her closet and shut the door. Her therapist followed in upstairs after a few minutes and was very uncomfortable to find that Julia was sitting in her closet in the dark. Julia has always told me that she didn’t like the dark and insists on sleeping with a night light. The therapist asked Julia is she wanted to come out of the closet and Julia said she needed more time. She offered Julia a pillow to sit on and Julia took that. After a while, Julia came out of the closet.

Today, when we talked about it (somehow there was no time yesterday), Julia said both that she liked the dark and that she was scared of it. She told me that she wanted to be a girl in a dark place. Last week, with Marilyn, Julia worked on her work book page that explained how the little dinosaur was sometimes make to stay alone:

“When Bai-Bai’s anger exploded like a volcano, the Ayi gallimimus could not calm her down. So the Ayi gallimimus put Bai-Bai in a part of the nest that was dark and far away from the other dinosaurs. Bai-Bai hated it there. She imagined hurting the Ayi gallimimus for hurting her. Bai-Bai imagined hurting everyone who hurt her.”

Julia drew a picture of the t-rex stepping on the Ayi gallimimus’ neck. Is the retreat to the closet a part of the story? Is it reclaiming something she lost? Is it just coincidence? Is it a sign that there is more wrong in her brain?

One of her current therapy goals is to identify what she can do when she is feeling specific emotions. As the therapists try to work through this goal, it is more and more apparent that although Julia is good at identifying emotions in general once they happen, she is unable to describe how she feels or looks when she experiences an emotion. Now, I am not sure that her identification is merely guessing. Julia has a great ability to guess and appear to understand things when in truth, she is gauging the response of the person asking the question and answering in a way to please her questioner. Her focus is on the questioner and not the question, and there is no learning related to the question going on. Julia has used this method of answering questions doing addition and subtraction for months. Now, I wonder if she is using it for the emotions work she has been going on for more than a year. Have we been reinforcing her focus in the wrong place? Providing her with a worthless skill?

Somewhere I read a story about perceptions of people with autism. Watching a movie of two people dancing in a room, the person with autism came away from the scene and could explain everything about the light switch that was in the background of the shot. He had only noticed the dancers because they interfered with his view of the light switch. I wonder if this inability to find the appropriate focus is behind Julia’s seeming inability to understand concepts that we’ve worked on for a long time. Does this explain why she is unable to answer a question about a concept when the question is phrased differently or is unable to answer months later when we try to build on a previously learned concept? If what she remembers is really about more accurate reading of the questioner, then it makes sense that she cannot remember the content that we thought she was learning.

And there is the dilemma that at some level, Julia is almost always motivated by anger -- other people’s, mine, mostly her own. So, asking her to identify how she feels and having her answer that at the most absurd times that she is angry may not be far from the truth. It may be the truth.

During this break, we’ve been working on an art project that was sent home by Julia’s art teacher. I have to check and see if I’ve explained it already. Today it was time to put the small pieces, that were worked on individually, together. I helped her lay out the pieces in the correct order and then asked her to tape them onto poster board. No matter how many times I explained it -- laying the small squared in rows that were identical to the rows that they were laid out on the table, she could not do it. We had an OT appointment and I explained what happened. I also talked to our lead therapist who I saw later on. Our OT suggested that it wasn’t a matter of not following directions or simply just not understanding the directions, but some inability to understand spatial relationships. When we got home after therapy, I drew squares on the poster paper and numbered the squares the same way the pieces were numbered. Finally, she could put the pieces where they belonged and tape them down.

School begins again tomorrow and I am very grateful. I am not optimistic about Julia’s ability to learn anything. I am doubting that what I’ve perceived to be progress towards a social, learning person is nothing but a refinement of her very fine survival skills which are of very little use.

And then, yet another grief related emotion. Lately, I have felt more jealousy, sour grapes, and general mean feelings towards the rest of the world than I ever have. I've never thought of myself as a misanthrope. Actually, David at times could be quite a misanthrope and I used to espouse an optimistic generosity of spirit.

Last week, I watched a middle aged man casually look through his wife's handbag for some change. I was green eyed jealous as he picked out some money, kiss his wife on the cheek, and exchanged a smile with her. There have been times lately when a friend on Facebook makes some announcement of some small good news and it is all I can do not to unfriend them on the spot. And when there was news about Dick Chenney's heart transplant, all I could think about was the fact that no one mentioned that 20% of transplant patients don't survive.

Is this the dregs of grieving or are there more ugly feeling to dredge up?

No comments: