Dealing

We had a week of spring break during which Rachel and her brothers didn't have school, and then her youngest brother was very involved in a play, so we've been a bit busy around here. Rachel has definitely enjoyed the spring weather. When it's been warmer she has enjoyed wandering around the backyard and has liked seeing the flowers come up. We've had a lot of cold days also, however, which she hasn't liked as much. Snow in December is awesome. Snow in April, not so much. I definitely agree with her on that one.

I realized the other day that there are a few things we do in our house that may seem odd to someone else if they don't have the explanation that goes with them. In our main bathroom (the one that Rachel uses almost all the time) we don't put the toilet paper on the toilet paper holder, we just set it on the back of the toilet. When it is placed "properly" on the holder, it's so easy for it to go around and around that Rachel ends up with a lot more paper than she needs and she either tries to wind it back up, or she puts too much in the toilet, which can sometimes make a mess. We're not too lazy to put it where it goes, we're avoiding unpleasantness.

I don't ever put two hand towels in the bathroom, although there is room for them. Rachel always stands to the side of the towel bar instead of directly in front of it, then she pulls the towel toward her to dry her hands and face. For some unknown reason, if there are two towels she always wants to use the one the furthest away from her, so she has to pull even harder. Not only am I a little concerned that she's going to pull the thing off the wall, she usually ends up with both towels falling completely off the bar. The OCD part of her can't allow them to fall down, but she usually can't get them back up the way they are supposed to be, especially from the angle she is working from, so she stands in the bathroom trying to figure it out until I go fix it for her. I'm not sure what is "better" about the towel that is furthest from her, but it doesn't seem to matter what color it is, just that it's the hardest to reach. I've tried getting her to stand in front of it, but she won't do that, either.

If she's given the choice, Rachel will usually go into her bedroom when we have company, but she frequently listens to the conversation from her room. If anyone laughs, she will usually laugh too. Loudly. It sometimes sounds a little odd, and people who don't know her sometimes seem a little nervous about it (people who know her are delighted by it, and it usually makes them laugh again, which makes her laugh....). I guess if you've been reading Gothic romance/mysteries, and you don't know Rachel, it could be a little unnerving.

It seems that when I was thinking about this a couple of days ago I had more things in mind, but I don't seem to remember what they are now. I'm so used to the way things have developed around here, I don't notice that they're different from "normal," if there is such a thing as normal.

We tend to do things the way that works best for us. Everyone does. We all deal with something. I have a friend who has bottles of lotion all over her house because she obsessively washes her hands, so her hands get red and sore, even with all the lotion. My thought is, just don't wash your hands so much, but she can't seem to quit, so she uses lotion. It works for her. I love that we have the ability to find ways to deal with issues we face, so much so that I forget we even do them.

eating

This morning Rachel sat up when I went in her room, but her hair was completely covering her face. As long as her hair is, it is surprising that it usually stays back and off her face while she's sleeping. I carefully parted her hair and pulled it back out of the way and was surprised to see a smiling girl underneath it. She happily and quietly said "there's a baby on it" while she climbed out of bed and went into the bathroom. Only then did I notice the magazine sitting on her bed. It definitely wasn't there when I tucked her in bed, so I don't know if she got up and got it before she went to sleep, or if she woke up a bit early and got it, or if she was up and playing half the night. If I had to guess, I would guess that it wasn't this morning, because she would have gotten her hair out of her face. She didn't seem overly tired, so I doubt she was up too long, but I guess we'll see how exhausted she is this evening. The morning went just fine, with a little issue of her getting stuck in "readjusting" mode. She kept pulling up her pants for about 3-4 minutes, and for awhile she pushed her hair to one side, and then the other, and then back, over and over. Both times I stopped her, and then she moved on and was fine.

Last night was kind of fun. Daddy and the boys were all gone for different things, so it was just Rachel and I. We had a meeting to go to at her school, so I sat her down to eat a quick dinner before we left. She didn't really eat, but the reason she didn't eat was because she couldn't quit laughing. I have absolutely no idea what was so funny, and she wasn't giving me any clues, but she was laughing so hard she couldn't really chew or swallow or anything. I finally decided that she could always eat when we got home. At her school after a brief explanation they dismissed us to go on a tour or to talk to people about our specific, individual needs, and they had refreshments. They served chicken salad sandwiches, and so I got Rachel settled eating one. It was a little messy, so maybe she was afraid to put it down, but it's been a long time since I've seen her so focused on eating quickly. With all the issues we've had with eating just lately, it was awesome to see her really eat. I was able to get some important information, and had a great time talking with people who understood what our life is like. It was awesome to again reaffirm that we are not alone, and that there is help. Rachel is so much easier to care for than a lot of other disabled kids, but sometimes it's still hard. It's so great to be able to open up to people and know they understand me. I am truly surrounded by a lot of amazing people.

Ability and desire

This morning Rachel was a little groggy. It was hard to tell what kind of mood she was in, because I'm not sure she was completely awake. She got dressed okay, as long as I kept reminding her what she was doing. I usually don't put button-up shirts on her because she has a hard time getting them on, and figuring out which button to put in which button hole is usually beyond her, but for some reason I pulled one out today for her to wear (possibly because most of her shirts were downstairs in the laundry room, clean, but still all the way downstairs). Anyway, since she was just staring blankly at me I went ahead and put it on her and buttoned it up for her, something I won't usually do. Being a good mother, however, I realized that sending her to school unclothed was a bad idea, and doing it myself was the only way it was going to happen. Anyway, she made it out to the bus okay, and was at the very least not in a bad mood.

Last night we watched the championship basketball game on TV, and Rachel was not even remotely interested. We had worked on cleaning out the garage earlier, so we ended up eating while watching the game. The combination of her lack of interest in the game and the fact that we had taco salad for dinner, which is a little difficult for her to manage without a table in front of her, led me to leave her upstairs to eat at the table, while we were downstairs. Apparently that was a bad idea because when I came up to check on her and see what she was doing, she had left the kitchen. I found her in the bathroom, and got her to go back in the kitchen to finish her dinner. When I came up again she had once again left, without eating, and was back in her bedroom "looking" at books, in the dark, not having bothered to turn her light on. I decided I'd better stay with her until she had finished eating. I ended up feeding a lot of it to her because she simply wasn't eating on her own. She was happy, but was uninterested in feeding herself. She doesn't have any extra body fat on her that allows me to just decide she's not hungry and let her skip a meal, so I have to insist. She didn't mind eating as long as I fed her, she just wouldn't feed herself (she would get a bite halfway to her mouth and then just stare off into space. When I reminded her to eat it she would dump the bite back in her bowl and get another bite, which also never made it to her mouth).

By the time she had eaten a sufficient amount, it was time for her to get ready for bed, so I sent her in to put her books away and get her pajamas on. I tagged along, since she had been so easily distracted all evening, but I found other things to do in her room, so I wasn't "watching" her (she will frequently pretend to be incapable of doing things if I'm watching, to see if I'll do them for her). Out of the corner of my eye I saw her put her books back on the bookshelf, which was really awesome! She has a hard time getting the books turned the right direction, and then getting them to fit on the shelf with the other books there. She usually won't even try, and if she does try she generally has them at an angle that won't quite work so she pushes for a minute, and then gives up and leaves them on the floor or stacks them up on her desk. If there are too many books on the shelf, so there's not much space for additional books, it's hard for her, but it's even harder if she's removed so many that the books slide down and aren't upright anymore. I've tried just stacking them on the shelf so it's easier for her, but they won't all fit that way and she doesn't keep them in separate stacks. They just all end up shoved onto the shelf in a jumble, and then they get ruined. So, most of the time I help her by holding up the books already on the shelf, or if she's tired I'll just do it for her. But last night, although it took her a little while, she patiently kept at it until she had put all her books away. I want to think of this as a milestone that we've reached, but in all actuality she has done this quite a few times before, sometimes as isolated incidents and sometimes she's become quite good at it and done it consistently for a time, and then for some unknown reason lost the ability to do it. But I'm cautiously optimistic. It's not that putting her books away for her is a burden I'm unwilling to bear, it's that she is so much happier when she can do things herself, and it frustrates her when she just can't manage it.

I'm not sure why, in one evening, I had to help her do something she usually does on her own, but was able to watch while she accomplished something that she generally can't do. I guess it was desire. She was able to accomplish the things she wanted to do, but not the things that were uninteresting to her. Unfortunately, creating a desire in her to do something she doesn't want to do is difficult at best. And by difficult, I mean that I'm unable to do it about 95% of the time. But I am so very pleased that when she really wanted to do something, she was able to accomplish it. One of the most difficult things is to watch her struggle and get upset and cry because she can't quite get her body to do what she wants it to do. One of the best joys of my life is to see her light up and smile and say "I did it, Mommy!"

How to be happy...

A few years ago when Rachel was going through a particularly bad time, I would occasionally make her mad on purpose because it was the only time she would talk at all. I would just keep insisting she do something she didn't want to do (like look at a picture or color or snuggle with me) until she got fed up with it (usually a couple of minutes) and would tell me "no." After that initial episode of speaking, she would respond to one or two questions or comments before subsiding back into her quiet world. I don't have to work at it quite so hard now, but some days she is really hesitant to talk, or interact in any way. She likes to sit in her bedroom and stare out the window, and most of the things she says are unhappy. I've been wondering, though. I know when I am unhappy and want to be alone, that's good for a little while, but then I have to get out and do something to cheer myself up. Sometimes if I "act" like I'm happy, then I become happy. I read an article once that said the physical act of smiling can actually release chemicals that make you happy. I can't remember where I read it or even who wrote it so that might be totally untrue, but I do know that sometimes "going through the motions" can get you where you want to be.

My one real goal for my amazing daughter is that she be happy. I'm wondering if I can somehow facilitate that better than I have been. When she was little I was so busy trying to take care of her and respect her feelings that I didn't push it when she didn't want to be held. Her brother had no such qualms, and he taught her to hug. I wonder if I pushed her a little harder to interact in a happy way if she would become happier. I'm trying to figure out exactly what that means, or how to go about doing that. I can't really tell her to smile and pretend she's happy and see if that works, because even on the off chance she understood me, she probably wouldn't do it. She will almost always smile for a camera, though. I have a few ideas floating around in my head, now. I'll have to see if any of them work.....

Oh, and her knee is fine. When I bathed her the night it was bothering her, I could see the beginning of a small bruise to the side of her kneecap. She must have bumped it on something just before she came home, and the bruise just took awhile to show up. It's a small bruise and it doesn't seem to hurt anymore, it just needed some time to heal. My life would be so much easier if she could tell me these things so I don't have to worry if something really big is wrong, but that's not going to happen, so I guess I'll just deal with it.