Coming to Terms

Today I'm writing about a couple of things that have been at the forefront of my mind almost constantly in the last while. I have alluded to some of the challenges Brittany has had over the past couple of years with pain and other symptoms.

What I have not been very open about, and have a hard time verbalizing even to myself, is that Brittany has an autism spectrum disorder. This past summer, along with a bipolar diagnosis (also difficult for me to talk about), we also had her evaluated and received a diagnosis of Asperger's Syndrome. Hers was tricky to pin down because some of her symptoms aren't as obvious as others, and even within the dx of Asperger's there are different levels of severity. Brittany is incredibly high-functioning and intelligent, which you see a lot in Asperger's. I'm grateful that she is able to connect and interract with others, that she has empathy and compassion and is very tenderhearted towards others. Some with Asperger's don't understand what rude is; they are very factual and just call it as they see it (like "you stink," etc.). She enjoys humor and is really fun to be with.

The way my husband describes it is that she has just enough of it for it to be a frustration for her and for us. She doesn't naturally "get" social cues, especially the unspoken ones. She has told me this, and actually self-diagnosed a year or so before I finally went after an evaluation. We were talking about a boy about her age in our ward who has very obvious Asperger's and I was explaining why he does and says certain things, and how there are some things he doesn't understand. I mentioned social cues, and she asked me to explain that. When I did, she said, "I wonder if I'm autistic," and proceeded to tell me how she never knew what to do in groups of people. She also doesn't understand metaphors like "bite the bullet" and the like, which we Americans use all the time in conversation. She doesn't do well with not knowing what to expect and transitions are hard for her. She can be very rigid in needing things a certain way and gets into patterns or routines of how she does things, even if they don't make sense. Some of her patterns are that she has a "spot" on the right side of the dining room table where she dumps things; her backpack, any "cluttery" things of hers end up there. If it gets moved or cleaned up it's very distressing to her because then she can't find anything.

People with spectrum disorders tend to have a lot more physical complaints and symptoms than the average person, and I think that a lot of her digestive complaints and head pain may be associated with this. There is a connection with her migraines and the bi-polar; when she goes into a depressive cycle or peaks in a manic rage she gets the onset of a horrible, horrible migraine. Her physical symptoms have been so debilitating over the past few years, and it has been so hard for me to watch. . .especially because it has been so difficult to get relief for her.

I think we have the right mix on her meds for the bipolar, and she is doing much better with that. It took some tweaking to get it right, and I have felt over the past few weeks like "Oh, THERE you are!" and it's been so good to see her be more herself (one of the meds was too high and had a numbing effect).

School has been very stressful, and I've found myself to a point of wondering whether she is going to graduate next year and whether I should just encourage her to get her GED and go to community college from there. Almost nothing about the structure of high school works for her. Her most functional times are afternoon through late at night, not morning to early afternoon. I've tried everything to change that, but biologically she is just not built for mornings. She has trouble staying on top of 8 different classes, adjusting to 8 different teaching styles, and balancing that with all the other aspects of being a teenager.

Some days I find myself very worried about her future and how she will function. Other days she seems so "normal" and "fine" that I think I'm worried about nothing. Then we hit a crisis point where her frustration level has built and explodes and I think I must be crazy to think that everything will turn out fine.

Coming to terms. It's what I'm doing, what I've been doing, what I've been avoiding, what I can't seem to be able to do. It's what I have to do. And along with that is figuring out what expectations to let go of and how to best fill her needs in the ways that are most effective for her. I have to accept that I can't "fix" Asperger's or make it go away. I'm a fixer and I don't like having to accept when something can't be fixed. It's hard for me to accept the saying "It is what it is." I've been fiercely protective of her privacy because I haven't wanted her to be labeled or ostracized, but really maybe I've been more fiercely protective of myself, and by doing that have robbed her by pretending everything is "fine."