Very small victories

Life with R. remains challenging. When I write that, I realize that challenging can encompass many ideas and degrees of difficulty. It feels a little disingenuous to even say she is challenging, because really for many hours of the day she is no trouble at all. (Of course there are some periods of time where her anxiety is totally ramped up, usually at 2 am, and then yes, it is challenging in all aspects of the word.) But it is this no trouble at all-thing which is so very difficult. You see, the reason she is no trouble is because she is perfectly content to sit on the couch and stare. Or sit at the table and do the same activity, over and over and over and over, for hours without a peep or comment. She can stand and watch me do things for hours without any desire to do something on her own. (This last is far more annoying than troublesome.) I think you get what I'm saying. It is not normal for a child to spend hours doing absolutely nothing and not complaining about it.

It is sort of the parental fantasy, isn't it? The child who never asks for anything or causes any fuss and just sits quietly. I would give you a couple of days with a child like that, and I guarantee by the end of the week you would be clamoring for the loud, engaged, messy, and yes, sometimes bored children you are used to. Actually, if I am honest, the three or four hours she will do this in the afternoon is a step forward from when she first came home and would do this all day, every day. I have to take the forward progress where I can find it.

I think, though, we have solved a little, tiny bit of this ongoing problem. At least it worked today for a bit, and I'm willing to give it another shot tomorrow. We have this large exercise ball, the kind you can sit on, that somehow made the move, and has been causing me to issue vague threats ever since. Sometimes it comes sailing down the stairs, no one seems to know how, with the last time breaking a bowl on the coffee table. It very nearly became garbage right then and there. I'm glad I was too tired to do something about after cleaning up all the glass, because it has come in useful. One of R.'s many challenges is her lack of proprioception (where her body is in space) combined with extremely low core muscles. While both are slowly improving, I'm always on the lookout for more ways to challenge her.

It occurred to J. and I, that perhaps sitting on the ball while doing some of her favorite table activities would be the key to stopping her disassociation in its tracks. (And that's what she is doing as she sits staring or doing the same activity over and over, just sheer disassociation. She's not there.) I noticed that when I make her sit on the floor and play, she cannot disassociate. R. hates sitting on the floor because it is not overly comfortable for her (I won't let her 'W' sit), and because it is not comfortable she cannot disassociate. I think it is because she cannot space out that makes her dislike it so. I do make sure she gets as much floor play as I can get out of her throughout the day. What if sitting on the exercise ball at the table had the same effect?

Well, today R. wanted to play with her beads. Now, normally this would be an activity that I would heartily endorse at all times, because she likes to use a small spoon to scoop beads back and forth into different containers. It has a lot going for it. But, she will use it to lull her brain into nothingness, which ends up being the opposite of helpful. I have to limit her bead play very carefully, and to stop it before she begins using it as a crutch. She was more than happy to sit on the ball today if it meant that she got to play with beads. She can actually balance on the ball better than I expected, and didn't fall off, which I was a little fearful of. What was most interesting to me though, was after about 15 to 20 minutes of playing with beads, she packed them up and announced she was done. She has never done that before. I have always been the one to decide the bead play was finished. Even better, she had an idea of what she wanted to play with next. It was a wooden puzzle she enjoys, and I agreed, but once again she had to sit on the ball. Happy with her puzzle, she did just that. Once again, after about 10 to 15 minutes, when she had done the puzzle, she brought it to me and announced she was done.

I know it seems a little crazy that I want to limit her engagement with toys, but a 15 - 20 minute attention span seems far more appropriate for her current intellectual age. It means that she engages with more things throughout the day, and she spends less time disassociating. To me this is huge. I have always felt that until we can keep R. present and engaged with her surroundings for the whole day, we cannot hope to make any sort of progress. The appeal of not having to feel anything is always greater than engaging and learning new things, which we all know can be difficult at times.

We'll see what tomorrow brings, but anything that stops the disassociation which she is happy to comply with is a win in my book.