spiders and snakes

Rachel talked a lot this morning. Almost a constant stream. A lot of it was unintelligible, and most of it was angry, but at least there were words. She struggled a lot with getting dressed. She tried to put on her clothes before she had taken off her pajamas, and she put her arm through the neck of her shirt and got stuck for a bit, and then got mad at me for pulling her arm back out and yelled "why are you biting my arm?" and then burst into tears.  She talked a lot about spiders and snakes and apparently at some point a ghost also bit her arm (?). She was really jittery this morning as well.  After she got dressed and ate some breakfast she seemed a lot more calm. I hope her day gets better.

We had a fun weekend. We had a baby shower for Rachel's cousin on Saturday, so we got to see lots of family. Rachel didn't talk very much, but I think she enjoyed it a lot. Saturdays are hard because we usually have things to do that she can't help with or wouldn't enjoy. It used to be a great day that she could just relax and pick what she wanted to do. She would usually color or play with toys and puzzles, sometimes with people and sometimes by herself. Now she won't really do anything unless I insist, and then she gets angry. In the evenings when it's dark she will sometimes go to her room, which is fine, but she won't bother to turn her light on. She just goes in her room and sits on her bed in the dark. It's really hard to make someone play and have fun. And by "really hard" I mean "impossible." Lately she hasn't even been getting her books and magazines out to play with, and if I help her choose a toy to play with it just sits there next to her while she stares off at who knows what. So, anyway, having a baby shower to go to was perfect because it was fun, low key, and got her out of the house for awhile. I wonder if she's bored with all the options she has to play with, and maybe needs something new, but I have no idea what it would be. I've tried letting her pick something out at the store, but she usually won't even look at the toys. Sometimes she sees something she acts like she wants, but is uninterested when we get home.

Sunday she just seemed distant. She got a bit upset in church, which isn't unusual, but I can usually calm her down with a hug, and holding her hand seems to keep her calm and connected to me. She didn't want me to touch her, and she was getting to the point where I was concerned that she would start yelling. I pulled out a notebook and pen and let her color, which distracted her a bit, and then gave her half a piece of gum to chew on. That worked fairly well, as long as I didn't touch her too much. I usually carry a notebook just for her to color in, and the page I quickly opened to had been colored on before. There is just one spot where she had scribbled, almost to the point of going through the paper. I encouraged her to pick a different spot to color, but she just kept returning to the area where she had colored before. The pen was held at such an angle that it wasn't able to make a mark on the paper anyway, and she wasn't pressing hard enough to really do anything, so I guess it didn't matter. I recently found a picture of balloons she made a few years ago. Just some circles with lines drawn down from them for the strings, but it is one of my favorites. I wish she would draw again. She used to love it so much.

I'm fairly certain that all the abilities and knowledge and desires she used to have are still in there somewhere. Occasionally they show up again, sometimes just for an hour or two, sometimes longer. But then they're gone again, and I'm left with either a vacant look or anger.

"I don't want to go"

Rachel paused part way out of bed, looked at me, and said "I don't want to go." Then she waited to see if I would insist. It almost worked. She so seldom makes requests, it was really tempting to let her go back to bed, but I know she enjoys school and I've got enough things to do that staying home with me wouldn't be much fun. She seemed a bit unhappy most of the morning, but not angry. "It's not my birthday. I can't do it. I don't think so, it's not my clothes. I died." That last one always gets to me, but as I posted earlier, I don't think she understands the meaning of a lot of words, just that they're negative. When she was getting ready to eat breakfast she heard Daddy singing a song that involved color (I can't remember now what it was) and she leaned toward me and quietly said "no, it's green." It sounded like she heard him say something wrong and wanted to tell me the correct answer, but didn't want him to hear. She even smiled a little. Awesome.

So, I guess I'd better go get my running in for the day. I really like running after I get started (or sometimes after I'm finished). Some days I have a really hard time getting myself out the door, though. One of the motivating factors is that I feel very responsible to take care of my daughter for as long as I can, and I need to be healthy enough that I can do it well. (That sounds like I'm on my death bed. I'm really not.) So on days like today when I'm right there with Rachel's first comment, "I don't want to go," a sense of duty to her gets me going when I don't care so much what size jeans I wear or if my arms are getting flabby. After my exercising I get to do the laundry, tackle the pile of mending that is building up in my sewing room, clean the kitchen, and pay some bills. I don't really mind doing these things, they're just not that fun. Maybe I should have let Rachel stay home today and we could have played with clay and read books and danced to silly music. What was I thinking.

Relaxed

This morning Rachel climbed out of bed, looked at me with a slightly bemused expression, and said "where going?" I guess that makes sense after a 3 day weekend. She wasn't in a particularly good mood. Her conversation went something like "I'm not a girl. I'm not Rachel. Not Going. It's not for me. I wear stupid." Lately she's gotten a little better at getting dressed on her own, but today we were back to having me remind her to put on every single item of clothing. (a side rant: why is it that I buy her a shirt that fits, even a little loosely, I wash it in cold water, hang it to dry, she looses weight, and now it's so skin tight that I feel uncomfortable letting her wear it in public? Annoying!!!!) Anyway, we got her ready for school and she went out to the bus without any particular issues, but I really would have enjoyed a smile.

Her brother has been sick the last few days so we didn't do much yesterday, even though it was a day off. It was a relaxing day, which was probably good. I'm really hoping nobody else gets sick. When Rachel was a baby she got sick almost anytime anyone looked at her, and every time she got sick, she would have a seizure. That always triggered vomiting. When she would get to the point where she couldn't even keep water down we would end up in the emergency room. Eventually her immune system got stronger and now she doesn't get sick any more than anyone else does, her seizures are rare, and it's been a really long time since we've had to rush her to the doctor. I'm so grateful for her improved health. I used to keep her home from things I know she would have enjoyed, especially in the winter, just because I was afraid she would get sick. I don't have to worry about that anymore. Sometimes I just need to remind myself that we've overcome some things, and be grateful. If she gets sick, it will mean a few days of her missing school and being uncomfortable and needing to watch her a little closer for seizures. That's all.  I sincerely hope she doesn't get sick, but I'm grateful there's no need to enter crisis mode.

weight loss

As I have been doing the laundry the last few weeks, there have been several times when I have discovered some of Rachel's jeans with the button and the zipper done up. That worries me. Those jeans fit her quite well during the summer, but now she can apparently take them off without undoing them. I was in the bathroom with her the other day and noticed that she unzipped the zipper, but didn't undo the button. She even remembered to zip the zipper back up. Anyway, her little idiosyncrasies don't worry me, they generally just make me shake my head and smile, but her weight loss concerns me. Her eating habits seem to go through cycles. For awhile she will eat a lot of everything, regardless of what it is. Then, for no reason that I can see, she nearly refuses to eat and/or swallow her food. Usually we have something somewhere in the middle, but the extremes really concern me.

Last night we had homemade pizza twists for dinner, which is one of her favorites (when she will acknowledge a favorite, that is, which isn't often). We were eating downstairs and I had come upstairs for just a minute. I could hear Daddy talking to her, asking her if she was finished eating, if she liked it, and if she wanted more. I couldn't hear her responses, but then Daddy told her if she wanted more she should go upstairs and ask Mommy. I could hear her quickly coming up the stairs, and she handed me her plate. I smiled at her and waited for just a second, and she said "More pizza, please" (I LOVE it when she smiles and asks for things appropriately - her smile is cute, and I know I'm giving her what she wants instead of just guessing). I put more on her plate, and she waited patiently while I cut it up for her, then she carefully and happily carried it back downstairs to eat. I didn't even have to push her to drink her water. So maybe the weight loss will resolve itself. Hopefully she will take care of it on her own, because I really don't enjoy spending an hour every meal trying to get her to swallow a few more bites. Even though I know it is necessary, I still feel mean.

This morning she ate her breakfast without any problems or complaints, so I'll keep my fingers crossed.

"the cat ate it"

Rachel had a good morning today! I think it might have something to do with the fact that it is light outside when she gets up. Or not. Just a guess. She said "I'm not going. It's broken." as she got out of bed, but it was said with a lighter sound in her voice, not sad or angry. When we went into the bathroom to brush her hair she said "My hair is gone." I asked her where it was and she said "The cat ate it." Her younger brother is allergic to cats and so we have never had one, nor do I think that cats typically eat hair, so I've no idea where that came from, but it made me laugh (and she didn't get upset that I was laughing). I was brushing her teeth when Daddy said "The bus is here!" She said/yelled  (with a mouth full of toothpaste) "Not here!" I realize that all these comments sound negative, but that's just what she does lately for some reason. Her tone was more conversational than unhappy, and I absolutely love to hear her talk!

Yesterday afternoon I went in to see what she was doing and she looked up at me, a little teary, and said "You broke my heart! You hurt my feelings! Quit biting my finger!" I hugged her and got her to calm down, and then she seemed fine. No clue where all that came from, but after a bite of chocolate, a hug, and looking outside for a bit she was happy again. 

There is a group for teenagers who have special needs in our area. They meet every Thursday night for an hour and a half. Each special needs teenager is paired off with a teenager who is volunteering their time, and they sing songs and have fun activities. (Actually, the group is for people 12 and older, so it isn't just limited to teenagers, but I think most of the volunteer kids are 12-18, and then there are adults that run the program.) For a long time we've been thinking about taking Rachel, but in the past it has seemed like school was enough. She would come home tired and really wanting to have "quiet time." Lately I've been thinking that she would enjoy it, and I have an amazing friend who goes and helps every week, so last night Rachel attended for the first time. She loved it. Again, most of her responses were "negative," but she smiled and talked about "friends" last night as I put her to bed. I am so grateful for the people who volunteer their time to help make our lives a little happier. It's good for her to be involved with other people and get to do things in groups. Lots of people know Rachel from school, and I think they are disappointed when she doesn't respond to them in social settings. She just doesn't lately. Not even family members she's known and loved her whole life. I hope it doesn't hurt their feelings or keep them from trying to interact with her and others. It's just part of who she is right now. Hopefully she'll come out of it again and interact with people better, but I don't have the slightest idea of how to spur that on. In the meantime, I know that having people come up to her and talk to her really makes a difference in her life, whether she responds at the time or not. As I mentioned earlier she talked quite a bit about her friends last night as I was putting her to bed. She really does notice and enjoy the interactions.

It seems like we're on a bit of an upswing. I hope we can keep the momentum going! Happy is so, so, so much better than sad!

"It's not working"

This morning I got Rachel out of bed and sent her in to use the restroom. She was moving slowly, so I indicated to her that she should go. She paused in the doorway, turned, and with a very serious look on her face said "I can't. It's not working." Then she turned and walked down the hall. Later on she was all dressed except for her shoes and socks. I came in the room to see her standing, staring down at them on her floor. I said "Rachel?" She said "I can't find my shoes." I have seriously wondered if my boys had just "faked" looking for things before, but none of them have ever been quite that blatant. She just makes me smile.

We had family over last night, and Rachel would come out for a little while, and then go back in her room. It was dark, but she didn't turn her light on. She just sat there in the dark. She did sit next to her window, so maybe she could see some lights on or something outside. I just honestly wish I knew what was going on in her head. Years ago (she was 8) I had some pictures we would look at frequently, and talk about the stories the pictures were depicting. I would tell her the stories while pointing to the pictures, and then ask her questions. She could usually answer the "who is this?" questions and the "what is this?" questions, but only occasionally could she answer the "what are they doing?" questions. One day when I had asked a question that was a little difficult, she sat and stared at the picture for awhile and then looked up at me with a concerned look on her face and said "I can't talk it, Mommy." She knew what she wanted to say, she just couldn't verbalize it. When she was going through the worst of her lows about 5 or 6 years ago and got to the point that we thought we would lose her, I didn't think she was aware of anything going on around her. However, when she came back and started talking again it seemed to me that she was talking about things that had happened during that dark time. It makes me wonder how much goes on in her mind that she can't share. How much more would she be capable of if she could express herself better. On the one hand, I hate to think of an active and capable mind trapped in a body that keeps it from being able to express itself. On the other hand, it's comforting to think that if she is trapped in her mind at least she is able to entertain herself and have things to think about.

After 19 years of intense and intimate involvement with her, she is still an enigma. There is so much I don't know, and don't even know how to begin to figure it out. But as I watched her walk out to her bus this morning I was touched by the knowledge that she is perfect, just the way she is, and I wouldn't change a thing.

Crying

On Friday I needed to go to the school for a meeting to finalize my son's classes for next year. I decided to stop in at Rachel's class to say "hi." The minute she saw me she burst into tears. I sat next to her and calmed her, and then I left. She's spent a lot of the last couple of days crying for no apparent reason, so it wasn't really a surprise to me that this occurred. The thing is, every time this happens, it warms my heart. I realize that to the uninformed this doesn't make any sense and might even make me sound cruel. But there is a reason.

We adopted Rachel when she was 9 months old. Between the adoption and the autism (and other disabilities), it took her a long time to figure out the parent/child relationship. For quite awhile she didn't really care if I took care of her, or if I suddenly disappeared and someone else was there. Also, she had been neglected and didn't cry very often, because in her limited experience it didn't really do any good. One day, though, we were in a group of people in my neighbor's back yard and something occurred to make her unhappy. She looked around at everyone, and when she saw me she started crying. And I cried too, because this meant that she knew of all the people there, I was the one that would take care of her. She KNEW that if she cried, I would come and help her. I don't think I can adequately explain the feelings in my heart at that time. My heart just grew. So, while I don't ever like to see her cry, I'm so incredibly grateful that she knows that she's safe with me, and that I'll try to fix whatever is wrong. There is such a responsibility attached to the role of parenthood. It scares me to think that I might not live up to what is expected/required of me. I hope that somehow she knows that if I don't fix something it's not from a lack of effort or desire. And, unfortunately, there are lots of times when I can't fix what is making her unhappy. Every time she turns to me when she needs something or cries when she sees me, she's telling me she still trusts me and knows that I love her and will help her. Since our ability to communicate with each other is difficult at best, this is one way I can know that bond is still there.

drinking

This morning I gave Rachel her seizure medication, as I usually do. I pop the pill(s) in her mouth and hand her a glass of water and she does the rest. As I watched her I noticed, again, the way she drinks. She puts the cup to her mouth, but then her tongue usually goes underneath the cup and she pours the water into her mouth and swallows without really moving her tongue or her lips. I tried it once, just to see what it was like, and I can't do it. I don't know why she drinks that way, and she's certainly not telling me. Sometimes she will chug an entire glass of water, 8 or more ounces, without a pause of any kind. Once I tried to get her to keep her tongue in her mouth while she drank, but she couldn't figure out what I was trying to do and we both ended up with water on us and I decided it didn't really matter HOW she was drinking, just as long as she got the liquid in her, so I let it go as unimportant. And it is. Her little quirks just fascinate me.

Noises

Over the weekend Rachel and I had a few hours or so where the two of us were sitting in the living room alone. I was doing some reading and working on the computer, and she was sitting on the couch with a magazine in her lap looking out the window. She kept making sounds (actually it was the same sound, over and over again), probably 4-5 times every minute, that could have been words had she opened her mouth a little farther. She looked relatively calm and happy. Every once in awhile I would ask her what she said or try to talk to her, and she would look at me like I was interrupting something important she was doing, and then proceed to ignore me.

I was annoyed. And then I felt guilty for being annoyed. And then I cut myself some slack because, seriously, any noise that is repeated over and over again can be super annoying when you're trying to focus on something else. And then I felt sad because if she would just open her mouth and talk there was probably something really cool happening in her head, and maybe I could have shared it. I wanted to scream "enunciate, child!" (and I probably would have if I had the slightest hope it would have done any good). She was having fun in her own little universe, and I wasn't invited. I just got to listen to enough of it to know it was happening.

I choose to be an optimist (notice the word "choose." I'd really rather throw a temper tantrum, but I'm "mature" enough to know that would be worse than useless). So, I'm grateful to know there was something going on in her head, and that it was important enough to her that she didn't want to be interrupted. I'm grateful that her daydream, or whatever it was, was happy. I'm grateful that I was able to watch her experience it, since I couldn't share it with her.

It's truly amazing to me how a small noise can become such an emotional experience when the parent/child relationship is involved. If my furnace had been making the same noise, I would have just tuned it out.

I am completely and eternally grateful that this beautiful, amazing, emotional girl is such an integral part of my life.

Smile

This morning Rachel was really talkative again, and seemed to be in a fairly decent mood (considering that it was morning, anyway). She mostly talked about colors and clothes. Most of it was so quiet I couldn't really hear her, but at least it was happy, and she talked! She didn't have any difficulty getting dressed on her own, either. It was a great morning.

The thing I'm the happiest about, though, is so simple it could very easily be overlooked. Last night when I was tucking Rachel in bed I leaned over, kissed her on the cheek, and said "goodnight sweetheart, I love you." She looked at me, and made eye contact so I could tell she was really "there," and smiled the most beautiful smile ever. At me. Sometimes the simplest things are the best things.

Pain

When Rachel gets undressed at night the first thing she does is sit down to pull her shoes off. It was a little sad this morning to watch her sit down on her bed and keep touching her feet. I know she got a little confused and was trying to take off shoes that aren't there, but she didn't seem able to move past the mistake on her own. At dinner last night she kept picking up her food with her right hand and placing it on the spoon she held with her left hand, and then putting it in her mouth. She used to be such a meticulous eater and couldn't stand to have her hands get food on them, and she almost never spilled anything. Lately she's been eating completely with her hands or a combination of her hand and spoon. I'm not at all sure why. I got her to color in her coloring book the other day. Sort of, anyway. She colored in the book and traded colors of crayons when I asked her if she wanted another color. Mostly she moved her hand with the crayon in it while she stared off into space. Sometimes the crayon connected with the book, and sometimes it didn't.

This morning when she walked out the door to go to school she was talking about falling down and hurting and blood. I'm wondering if this is a memory or a dream or just something she was thinking about on her own. When her youngest brother was in elementary school he came home one day and his eye looked a little red and swollen. I asked him about it and he told me someone had accidentally hit him in the eye, but it was okay and it didn't hurt, it just itched a little, so I didn't worry about it. About a half hour later his eye looked even worse, and when I asked him to tell me again what happened and how long ago, he couldn't tell me much. I kept trying to get answers from him, because it was obviously more than just a small tap on the eyebrow, and it couldn't have happened earlier in the day since it was still getting worse. He kept trying to come up with a story that would make me happy, but he couldn't. When the other eye started turning red, I realized that it must be allergies. By the time we talked to the Doctor and got some medicine for him, both eyes were swollen shut and the whites of his eyes were all swollen, too. He looked like something from a horror movie. It was no wonder he couldn't explain to me what had happened to make his eye turn red. My initial insistence that something that would make his eye that red would have made enough of an impact that he would certainly remember, and that I wasn't going to get whoever hit him in trouble, I just wanted to know what happened, was totally off base. It was interesting to see him try and explain to me something that he didn't understand. I wonder if that is what Rachel is doing. She talks about blood a lot, and talks about falling down and things hurting. I wonder if she hurts somewhere and doesn't know why, or possibly can't even pinpoint where it hurts, so she's trying to come up with a scenario that would explain the pain. I know that when I've hurt myself badly, I dream about being hurt. She talks a lot about pain and blood in the morning. I don't know if it's a result of a dream or not being a morning person. I wish I could communicate with her better.

This morning I was going to go run my four miles, clean my kitchen and living room, and sort through some books. But I have a little bit of a headache that I'm hoping will go away. It's not bad enough that I can't function, but it hurts enough that I don't want to do anything that makes me move too much, so instead I've done a little reading and some thinking, sitting and looking out the window.

I really wonder if Rachel hurts all the time, and that's why she wants to just sit and doesn't engage in activities or with people like she used to. I don't know how to find the answer to that. I feel like all I can do is make up a story that might explain what the facts are, but I don't have the information I need to get it right.