Reading this over, I feel like I am regularly reporting on a pendulum—steps forward and then back again. And admittedly, I desperately want to report on a simple, ordinary upward progress without a hint of directional change.
Yesterday was not a good day for Julia. What concerns me most is her moods and their resultant behaviors are neither reliable nor dependable. And they are also not predictable.
As I’ve written, we’ve had a few decent weeks with Julia. To add to the tidy pile of good—on Wednesday, another student bumped into her and her reaction was extraordinarily appropriate. The behavior of the other student may have been intentional but definitely not personal. Julia, who can make a very big deal about any casual physical contact, had no negative reaction. Staff sent her to the nurse in case something hurt and she was fine. She reported it to me in a very casual way—completely appropriate for the magnitude of the experiene. That felt good.
Julia has, however, been very sleepy at school and has napped at various times for 20 minutes. I’ve noticed more tiredness as well—needing a long nap when she gets home from school and even finding it hard to stay away during her cello lesson. And so, wondering if this was a meds adjustment issue, I called her meds doc and together we decided to take one of her medication down a bit. It is the med that controls outbursts, but that has the side effect of sleepiness. The meds reduction was only in effect for two pills worth which would not have had any effect on Julia’s behavior yesterday.
Somewhere around 4 a.m. Thursday morning, Julia woke me up to talk about her body and her dissatisfaction with how she looks. I am never pleased to be woken up like that and I have no idea if she was up for a long time before she came to talk to me. I don’t think she would have woken up, started perseverating and immediately come into my room, but you never know. We spoke briefly, in retrospect much briefer than she would have liked, and she agreed to go back to her room and back to bed. When it was time to wake up, we talked some about her body and I imagined we had talked her out of the perseveration.
This perseveration is focused on her body—she is fat, she doesn’t look like a Korean Idol, she had bulges around her waist when she she sits down, she wants her body to change immediately—however, there is nothing she wants to do about her body. My line usually is that she can exercise for a “better” body. This only became my ordinary response after of months of trying to convince her that nothing was wrong with her body and/or that she has a good body. Those rational responses to her complaints inevitably led to some kind of melt down either with me or at school. When I ask what is wrong with or what she wants to do about her body, she cannot answer. She does not want to give up any food—she loves cakes and cookies and she could give them up without danger to her health, but she doesn’t want to give up cake. She shows no signs of excessive exercise and even during her regular physical activities—track and rowing—she will, at times, refuse to do stretches or some part of the program. So, the body focus is about her body and not about her body making it almost impossible to deal with rationally. The question becomes how to deal with the body perseveration when she starts in—there is nothing rational that does any good. It seems to be more a way of ramping herself up to get into a high emotional state than dealing with body complaints.
Part of me wonders if I should just keep her home when she starts a day like that; however, that would be quite the punishment for the both of us. I don’t know, can’t imagine it would really help. To be clear, however, she was probably agitated a bit when she came into by room at 4 but by 7 she was leaning towards rational conversation that I attempted to meet.
After waking up, Julia dressed, ate and got ready to leave. Today, was her library day and I wasn’t sure if the bus would bring her to program (I had called to cancel the bus) or if I was to drive her directly to the library. Emails flew back and forth from school, and the decision was that if the bus came she could take it to school and then she and her aide would head out to the library. If it didn’t come, I would drive her to the library. She did not appear to be concerned about this decision. She would get to the library one way or the other.
And that was what happened. Julia got on the bus generally happy and from what her Inclusion facilitator reported, she got off the bus happy. However, within a few minutes, it sounds like her good mood disintegrated and she was very angry. Reminders that this was a library day didn’t help. Instead, Julia raged for about an hour with lots of negative self-talk along with kicking chairs and hitting the copy machine. The social worker and various staff helped her calm down but she missed her morning at the library. She was fine when she ate lunch but afterwards became angry again, possibly because she had missed her library morning. I’m not completely sure.
After they got her calm again, I spoke with her inclusion facilitator by phone and heard all about the day. The most disturbing thing she said was that Julia had not had behavior this intense or long since early in the fall.
Every time I think we have taken some steps forward, the backlash is wicked! My big fear at this moment: I have no idea what this says about her possibilities in January when there is no school program option. At this moment and yesterday when I took the call, it was and is very difficult to stay in the moment, process information and move on. I am both in the past questioning what I could have done differently and the future of what will I do to make a good life for her. Reacting in the present moment to only the moments of the day is difficult, reacting to my wild mind reaching forward and back is almost impossible.
And then a thought. A thought that definitely makes me smile today. In the Netflix series, The Good Place, one of the characters talks about the timeline in the afterlife as “Jeremy Bearimy.” He explains that life on the earth plane moves from point A to point B in a linear fashion; however, in the afterlife, time doubles back and loops around and winds up looking something like the name Jeremy Bearimy written in cursive English.
Today, I don’t think I need to wait for any Hollywood created after-life to get my mind blown living on a Jeremy Bearimy timeline.