Talking!

This morning Rachel was out of bed and looking at some of the presents she brought home from school yesterday. She proceeded to make sure everyone knew they belonged to her and no one else. She talked all morning. "It's blue, not red. It's got pink on it. It's a girl. Like Rachel. I'm a girl. It's got green on it. It's for girls. It's mine." It was great to hear her talking. It took her forever to eat, but she dressed quickly, only complaining that her pants are too big (they're really not). She then covered her bed with books and magazines and pens, and has been talking to them all morning. It's nice to have her talking and happy!

Yesterday Daddy and I had our anniversary (27 years!) so we spent the day together. Rachel's brother was kind enough to get her off the bus, feed her dinner, etc. When we came home at about 9:00 she was happily watching a movie. Brothers (sons) are awesome! We brought home doughnuts. She loves doughnuts with sprinkles, but she only ate half of hers and didn't want the rest. She went to bed fairly happily.

ditto

This morning Rachel said "What are you doing?" when I got her up. I responded that I was getting her up for school and she said "No, you're not!" She kept repeating it all the way into the bathroom. She kept pausing and waiting for instructions all morning. I only had to tell her to get dressed (not specifically "put your shirt on") so she knew what she was doing, she just wouldn't do it without being prompted. Tired maybe?

Yesterday afternoon and evening were just the same as almost every other afternoon and evening. I remember when she was always upset and throwing temper tantrums and was very loud and difficult to deal with. I thought that was so hard and nothing could possibly be harder to handle. I was wrong. While we have more peace in our lives when she's quieter, my heart hurts. It feels like my baby has been taken away from me. There are times when she comes back for a bit, but mostly she just sits and doesn't talk. I wish I knew what to do.

"Not Sweetie"

This morning when I went in Rachel's room she started to sit up, but slowly and groggily. I said "It's time to get up, sweetie" and she just looked up at me for a second and said "Not sweetie!" I apologized and she looked at me for another few seconds with a kind of measuring look, and then got up and went in to the bathroom, pausing for a second to say "don't" in the doorway. She's not really a morning person most days, and I can see how my trying to be all positive and happy could be pretty annoying. I suppose I should tone it down first thing in the morning.

She doesn't have an order that things have to be done in, which makes things easier most of the time. Disruptions to her schedule don't particularly throw her off, but if I want her to get dressed I usually have to lay her clothes out in the same place so she can find them. This morning I went back into her room to check on her and she was standing in front of her sweatshirt, but still had her pajama top on. She was kind of fingering the pajamas like she wasn't sure what she was supposed to do next. Although, it could be that she just liked the pajama top better and didn't really want to change. I reminded her that she needed to take her pajamas off and she immediately got back on track and didn't have any more difficulty. Six or seven years ago I could just toss clothes on the bed, even if they were wrong side out, and send her in to go to the bathroom, wash her hands and face, and get dressed, and she could handle it. Now she gets confused so easily. It'd be nice if we even knew what caused the problem. It's hard to fix something when you don't know where the problem lies.

Yesterday afternoon was the same as all the other days have been lately. Her brother had a choir concert and Daddy and I needed to go visit a friend. She seemed a little tired, so we left her at home with her other brother and let her watch a Christmas movie. When I was getting her ready for bed she grinned and said "It's got stars on it!" Her pajamas have stars and hearts all over them. It was great to see her happy. I think leaving her home and letting her just relax was good. I love tucking her in bed at night when she's happy.

wet feet

Rachel kept saying "doing?" throughout the morning. It's an abbreviation of "what are you doing?" that she frequently uses. I think that's all she said all morning. She got a little confused part of the way through the dressing process and couldn't seem to remember what was next, but as soon as I pointed her in the right direction, she was fine. It snowed last night and Daddy had gone outside to shovel the snow out of the way so she had a clear path to the bus. The gutter along the side of the road had slushy snow and water in it, but not very much. She stepped right in it. When she was little she had perception issues and wouldn't crawl/walk off a rug sometimes. Now, she steps right in puddles when it would be so easy to step over them or go around. I'm not sure if it's still the same problem, except that she's learned to just go for it, or if she really doesn't notice. I hope her feet aren't wet all day.

Her afternoon went the same as almost every other afternoon for the last month or so. I really wish I could find something else that she would do.

Last night we went over to her brother's house to watch a movie. She seemed to enjoy herself. She kept turning so far that she couldn't see the TV, but would turn back when she was reminded. When it came time to go home I asked her if she wanted to go home and she said "no." I asked her if she wanted to stay and she said "yes." So we talked for a few more minutes and then, since it was getting late, we came home. She was relatively happy while getting ready for bed. I didn't get a smile, but I didn't get a frown either. I think she was just ready to sleep.

laughing

This morning Rachel climbed out of bed as soon as I walked in the door. "What are you doing?" and "I don't want to." were her sentences for the morning. She had no difficulties getting ready today. She didn't hurry, but she didn't need to be reminded what to do.

Yesterday after school she spent her time in her room with books. That seems to be all she wants to do lately. She kept laughing, which was nice. I asked her what was funny, but she wasn't interested in interacting with me at all. Sometimes her laughter is just awesome, fun, girlie laughter. Sometimes you can't hardly tell if she's laughing or crying unless you look at her. Sometimes it's kind of like the soundtrack to a creepy Alfred Hitchcock movie. She kind of hit all of those yesterday. I never did even figure out what she was laughing at. I went in to check on her at one point and she was standing and staring out the window. I asked her what she was looking at and she said "balloons." It was dark outside and we could see Christmas lights, so I thought maybe that was what she was referring to, but then she said "and cake." I personally couldn't see balloons and cake outside, but since they made her happy, I'm glad she could.

We went to another drama night at the high school last night. Her brother was in a short piece, so we went to cheer him on. She laughed a lot. Every time somebody laughed, she laughed as well. I'm not sure she got the humor, and I'm also not sure she was really watching, but she did laugh. I choose to see the bright side. She seemed to be in fairly good spirits when I tucked her in bed, but wasn't interested in talking. But she smiled. That's good enough for me.

girls dancing

This morning when Rachel got out of bed she looked at me a little accusingly and said "it's too big." I'm fairly certain she was referring to her pajamas since she was holding them up so they wouldn't fall off. Her pajamas fit her perfectly, except the waist. You could probably fit two of her in the waist. They do have a draw string, but a drawstring is a little beyond her capability. I usually tie it for her, but I apparently forgot to last night, or it might have come undone while she was sleeping. I guess I should put new elastic in the top so she doesn't have to worry about the drawstring. I'm totally letting the manufacturer take the blame for this one. Not that I can explain that to Rachel. Oh well. She had to be reminded to stay on task quite a bit this morning. She took quite awhile to get her shoes and socks on, but her socks have reindeer on them today, so maybe she was just checking them out. That's the story I'm sticking to, anyway. She took awhile to swallow each bite of breakfast this morning (I haven't quite figured out how to hurry her up, if a drink doesn't help) so I ended up sending her out to the bus with food still in her mouth, which means unbrushed teeth. If giving her a drink doesn't get her to swallow, there's not much I can do. Somedays she will only swallow a bite when I put the next bite in. Frustrating.

Yesterday she really retreated into her head. She didn't hardly talk or look at people or anything. Her hands were more clawlike than they've been in awhile. When she does this, her entire look changes. She pushes her lips together kind of like a kiss, but super exaggerated. If she gets mad she'll say something, but that's about the only time. It made me so sad.

When I was tucking her in bed last night I kept talking to her, trying to get her to interact with me a little. As I pulled the covers up, she looked at me, smiled, and said "it's a story." I asked her what the story was about and she said "girls." I asked her several other questions, but didn't get a response. Finally I asked her what the girls were doing and she smiled really big and said "dancing." It's amazing how that little girl can totally melt my heart with just a smile and a couple of words. I tried to get her to talk some more, but she wouldn't. I asked her if she was ready to go to sleep and she smiled and said "yes," so I kissed her goodnight and left. I hope she dreamed amazing dreams of girls dancing. I love it when she's happy.

Tipping over again

Rachel was sitting up in bed when I went in to get her up this morning. She hadn't gotten up yet, but she was obviously awake. I asked her if she had slept well, and she said "yes." That was an awesome response. She kept making noises all morning. I think in her mind they were words, but she didn't open up her mouth far enough to actually have a word come out. She seemed relatively happy until I wanted her to get dressed. She said "I want to go sit down. I want my presents." She then proceeded into the living room to the couch. I don't know if she's thinking birthday or Christmas, but she wasn't happy that I didn't have presents to give her. I took her back in her room to get dressed, and she seemed to forget fairly quickly. I dressed her today, since she is wearing a dress, so that didn't take long. She wasn't in a talkative mood at all. The only thing she said today in church was "I want to go home." Now we're home, she doesn't really want to do anything at all.

Yesterday was a little crazy, with lots of errands and chores being done. She was totally uninterested in any of it, sadly, so she mostly sad in her room or in the living room and looked at books. Actually, she sat and stared at nothing while she had the book in her lap. Right at the moment she is staring out the window, and she keeps tipping over to her right. I wonder if she'd tip all the way over if I didn't say her name once in awhile. She's done this before, and even worse, and she's come back. I have to keep remembering that.

sad

This morning Rachel got up out of bed on her own (possibly because we had Christmas music playing) and by the time we went in to get her up she had books spread out on almost every inch of her bed. She's been taking the pens out of the pen holder on her desk and setting one on each open book. At least until she runs out of pens. Wish I knew what that's all about. She wasn't in a good mood at all. She got dressed with a lot of prompting. It took her forever to get something on her feet. She just sat with socks in her hand staring at the wall. I reminded her to put them on her feet and she would act like she was going to put them on, and then just stop. I think it took about half an hour or more. Fortunately we weren't in a hurry. I couldn't hardly get her to come out of her room today. Daddy finally got her to come out and look at the Christmas tree and look at a huge Christmas book that has lots of fun pictures. She mostly just sat and stared. I wish we could convince her to be excited and happy about anything.

Yesterday after school she was unwilling to do much. We had a party to go to in the evening. I hoped she would liven up a bit, but she didn't really. It began with some really beautiful music, and she did like that. She smiled a bit and held my hand, but she seemed a little jittery. Her left leg twitched the entire time. I kept trying to get her to relax her muscles a bit, but she couldn't/wouldn't. After the program we had dinner. She ate fairly well, but didn't want dessert. I hoped she would want to interact with people when they talked to her, but she didn't. It makes me sad that she can't enjoy Christmas time.  It used to be so magical to her and she loved everything about it. I want her to be happy, but right now I would even take anger or sadness. It just feels like she's gone. I miss my girl.

Sisters

This morning Rachel's conversation was about the same as yesterday, but it consisted mostly of "I'm not." She had to be reminded to keep getting dressed, and she spent several minutes adjusting her jeans before she would button and zip them. I don't know if they felt funny or what. She seemed happy with her frosty the snowman sweatshirt, but wouldn't/couldn't show any excitement about it. She waved goodbye when she got on the bus (yay!)

Yesterday after school she was just not in a good mood. She wanted to stay in her room and look at "bookzines." When she has candy I let her keep it in her room in a little candy dish, because she only eats a piece every week or so. That way she can have it when she wants it as a treat. When I went in to check on her she had a package of gum sitting on the bed next to her, so I asked her if she wanted help getting a piece. It's not meant as a reward or anything, so she doesn't have to "work" for it, but I like her to ask for help when she needs it because it really helps when she'll communicate with me. The gum sitting next to her was rather obvious, but sometimes it's not at all apparent what she wants. I could tell she really wanted it, but couldn't bring herself to say "yes." She kept saying "no" with her mouth, but her expression and body language said "yes." I couldn't decide whether to give it to her anyway, or try to get her past her bad mood enough that she could say something positive. I finally just started to open it, very slowly, while asking her if she wanted it. She finally said (or rather, yelled) "yes. stupid boys." I wasn't thrilled with "rewarding" her for saying "stupid boys," but it was so hard for her to get the "yes" out, that I decided it was okay and gave it to her. Then when we ate dinner (2 hours later) she didn't want to spit the gum out. She kept saying "It's mine. It's not garbage." I can't imagine that it had any taste left (and she does have more), so I insisted. She was mad for just a minute, but got over it fairly quickly.

After dinner we went to her brother's house to celebrate her sister-in-law's birthday. Rachel loves birthdays, as least as long as it's her birthday. Other people's birthdays, not so much. Aside from saying "it's my birthday" a lot on the way to their house, she was fine. I was really glad. There was a lot of family there, and Rachel spent most of the evening laughing and smiling. I absolutely love her laugh and smile. She didn't talk very much at all, but at least she was happy. Happy is good.

There have been times in Rachel's life where she has been very talkative and interactive (and possibly psychic. Just kidding. Mostly). About 6 years ago her oldest brother bought her a pink ball/pillow for Christmas. We were all in the store together and he saw the ball and knew she would love it and it would be easy for her to play catch with, so he bought it for her. I'm not sure she ever even saw it (I know she didn't see him buy it, because I took her to a completely different part of the store). After he bought it he stuck it in his very large coat pocket. It you really looked, you could kind of see some pink inside a plastic bag in his pocket. On the way home she said "Why do you have my pink ball in your pocket?" So much for surprises.  Earlier this year when my son was just starting to date his wife, Rachel was interested and talked about his girlfriend. One day she painted Rachel's fingernails. Rachel told everyone that her sister had painted her fingernails for her. She came up with that on her own. No one had mentioned "sister" to her. I know she is VERY excited to have a sister now. When I was talking to her as I was getting her ready for bed and tucking her in, we talked about her sister. She didn't really say anything, but she smiled and nodded her head. As tired as she was, that's "saying" a lot. Sisters are awesome, and I'm so glad she has one now.

Nodding

This morning Rachel said "I'm not going. Is too, I'm not going. Not going. I'm not going...." It wasn't said in an angry voice at all, just a normal conversational tone, but she kept it up for quite awhile. She got dressed all on her own with no problems or pauses, which was nice. It was a fairly uneventful morning.

Tuesday after everyone left for school, I drove a couple of hours to visit my Mom, and stayed overnight. I didn't come back until about 5:00 yesterday. So far as I know, everything was fine while I was gone. It's hard for me to leave Rachel, but it's good for us. We spend so much time together, it's probably healthy to be apart for a bit. Yesterday when I got home, she was sitting in her room with lots of books. She smiled at me, but didn't really say much. It would be nice if she would give an indication that she missed me, but I guess I'll take the smile. She wasn't interested in talking to me (or listening to me for that matter), so I just let her hang out in her room.

Her brother had an orchestra concert last night, so we took her. She seemed to enjoy it. She smiled through most of it and actually laughed a little bit at one point. She was kind of nodding her head a little, possibly to the music? It looked a little bit like someone who is nodding their head, falling asleep while sitting up, but it fell back instead of forward. She quit doing it when the music quit, so maybe it was just a response to the music, but I don't know. Her left leg and hand were both twitching the whole time, so maybe it was a muscle spasm. Another unknown. We have lots of those. She was quite happy through the whole evening, but rather quiet. I sent her upstairs to get ready for bed, but when I came up she was just sitting on her bed, looking at books. I don't know if she forgot what she was doing or if she decided she didn't want to go to bed yet. I had to keep reminding her to do the next step, but she did them as soon as she was reminded, and went to bed fairly happily.

Music

Rachel didn't say hardly anything this morning. We were in a bit of a hurry and I think she was still a bit sleepy, but mostly I think she was listening to music. Daddy put some music on, and she seemed to enjoy it (albeit a bit groggily). I had to keep reminding her to get dressed. Every piece of clothing had to have its own reminder, but it might have been just that she was enjoying listening. At least she wasn't unhappy. She even waved after she got on the bus (she put her hand up, anyway. I'm saying that's a wave).

Yesterday after school she just wanted to hang out in her room and look at her "bookzines." I made a definite effort to make sure she likes her room, so I'm glad she does, but I wish she would do some other things. I wonder what she thinks about.

Last night we went and got our Christmas tree. We go to the same Christmas tree lot every year and pick out a really tall "Charlie Brown" tree. We have a vaulted ceiling, so it can be 11 or 12 feet tall, but we have a lot of furniture in a not huge room, so it can't be very full. Also, when we've had the really full trees we've found that it's hard to get all the ornaments on them, so we like them a little sparser. At first she was having fun, but then she started getting upset. I have no idea what set her off, but she started calling everyone "butthead" and then started crying. I tried to hug her to calm her down, but she just got more angry and loud. I finally had to take her back to the car for awhile. After saying things like "mommy die. I hate this. It's stupid. I hate boys" for awhile she calmed down and we went back out and finished picking out the tree. I had really hoped she'd have fun. Her mood didn't really improve after we got home, either. It would be so nice if we could somehow figure out a way to have the things she's always had fun doing coincide with the times she's in a good mood. That would be so awesome. Sadly, her moods can change so fast you'd have to be magic to make that work. And I'm definitely not.

Baby Jesus

This morning Rachel very sleepily climbed out of bed, kind of swayed for a minute trying to get her balance, and mumbled "I'm tired" on her way into the bathroom. I wish I knew if she goes right to sleep or wakes up in the night. She got dressed relatively quickly and on her own, but had a little trouble with getting stuck in what I call her OCD loop mode. Sometimes when she's getting dressed she'll adjust a piece of clothing, and then adjust it again, and again, and again.... The problem is that the more you pull something on or up (like underwear or socks) the more uncomfortable they become and the need to adjust them increases. I sometimes have to stop her and fix whatever it is that she's "adjusting" because she can't figure out how. If it gets too bad she'll just take it completely off again and throw it or rip it. She will sometimes do the same kind of thing with her dirty clothes or pajamas she's taken off. She'll put them down, decide they're not in the right place, and just keep moving them an inch or two. Usually the amount that she moves them is pretty minuscule, but she'll keep moving them just a tiny bit until something distracts her. Usually it's just when she's getting dressed, though. She was relatively happy this morning (she didn't say anything inappropriate to anyone, at least).

Yesterday at Church I had the opportunity of talking a little about Rachel and her feelings about Christmas. At first it was really hard for me to come up with anything positive to say, because she's been so negative lately. I really struggled to find something to share, but then I remembered how she used to call the nativity the "Baby Jesus." In her sweet, childlike way, she understood that that was the important piece. Without that piece, it's just a bunch of people and animals. From the time she was very small, she could look at a picture she'd never seen before and, out of a group of bearded and robed men, point to the picture of Jesus. She knows Him. She always has. And He is there for her. There have been so many times when I needed to explain something to her that was totally incomprehensible, and found I didn't need to. She was fine. When I literally can't do for her what she needs, He comforts and helps her. And then He comforts and helps me.

We ended our day by visiting friends who have an amazing nativity scene. It takes up a whole room, and it's the entire city of Bethlehem. We go each year and look at each of the figures and the animals and the houses. It's truly amazing. Rachel didn't say much, but she really enjoyed looking at all the details. She was smiling a little bit when I put her to bed. I love this time of year.

Missing the monster

Rachel wasn't in a super bad mood this morning, but it still wasn't good. She started out with "My hair is messed up" and continued with "Boys are rude. It's my birthday. I'm not going." I usually dress her on Sundays (or any day she's wearing a dress) because I got tired of replacing her slips after she ripped them when they wouldn't go on the right way. She has a half slip, but she can't quite figure that out either, so I just put the parts on that she has issues with. She very rarely wears button up shirts for the same reason. Autonomy is wonderful, but I also like not having to replace her wardrobe every time she wears something. Starting the day out with her being super angry and frustrated isn't good either.

She was fine during church. Not happy, by any means, but okay. I wish I knew how to help her get her socialization skills back. She doesn't like to stay home all the time, but she always complains while we're out. It makes me sad. Actually, she complains a lot when she's home. I just wish we could figure out how to help her be happy again.

Yesterday her brother and sister-in-law were here for awhile, and that definitely added to her day. We had some errands to run that wouldn't have been fun, so she stayed home with her brothers. She sat in her room most of the day, so if they hadn't come she wouldn't have had anything fun happen. I've still been unable to interest her in anything but looking at books/magazines and watching out the window. It's been a long time since she got out any of her toys on her own. Frequently when left alone she retreats into her head and doesn't seem to be aware of what is happening around her at all. I feel bad when I've got things I need to do that preclude me from interacting with her very much. Ironically, it's the opposite of when she and her brothers were little. Then I worried that they would get into trouble. Now, I worry that she won't do anything at all. Several years ago she drew a little person on her wall. I left it there because it was cute, but then she went through a particularly bad time and kept saying it was a monster, so I scrubbed it off. I wish I had it back.

Boys

Since Rachel was able to sleep in this morning, she got up on her own, got out some magazines, and spent some time looking through them. I am so thrilled that she is getting up on her own when she is ready! She ate and got dressed without saying much and without much help. Then she went back in her room to look at her magazines again. A little while later I could hear her crying very loudly. I went in and asked her what was wrong and she pointed to a picture of a girl hugging a boy and said "it's MY birthday!" and started crying even louder. I got her calmed down a little, but she kept saying things like "I hate boys! Boys are bad! I don't like him! Boys are rude!" and pointed to several pictures of boys with girls in the magazine. Might this have something to do with being a 19 year old girl and wanting a relationship with a boy? If it is, there is nothing I can do about it. She doesn't have the maturity to handle anything like that, even if I could orchestrate anything that complicated. When she was 16 she went to prom as a group with her class. One of the peer tutors was her date, and he was very attentive and kind to her and she had a marvelous evening. She still, three years later, talks about that night and that particular boy. I don't honestly know if it was good or if it was like showing her something awesome and then snatching it back and saying "no, you can't have that!" I want her to have as much of a "normal" life as she possibly can, but there are some things that just won't be available for her. I wish I knew what would make her the happiest, long term.

Yesterday we took Rachel with us to run some errands. We were at a house where the people had a talking bird. She loved it! the minute she saw it she started grinning and wasn't afraid of it at all. They got it out of the cage and she got quite close to it and thoroughly enjoyed it. I've never really wanted to own a bird (since my oldest son was a year old and was terrorized by a parakeet), but now I wonder. If we got her a bird that was really tame, maybe it would help her. I know they've done studies about kids (autistic or not) and animals, and how pets help them. So I'm thinking....

Last night we were watching a little bit of TV and Rachel started looking tired, so I sent her up to get ready for bed. Some times I've been able to send her upstairs and she would put her pajamas on, put her clothes in the hamper, her shoes in the closet, go to the bathroom, and come back and tell me she was ready for bed. Lately (and by lately I mean the last year or so) she has to have her clothes and pajamas laid out in a specific order for her to be able to put them on, and she usually has to be reminded to put them on. Anyway, I sent her up to go to the bathroom and intended to follow her up in just a minute, but I fell asleep. About an hour later I woke up and went to check on her and she was sitting on her bed, in the dark, half asleep. She hadn't put her pajamas on. I felt really bad. So I put her to bed rather quickly. She knows how to turn her light on and she knew where I was, so I hope she was just relaxing and not feeling neglected. She seemed relieved to be in bed. Guess I should get to bed earlier, too.

Hope

Rachel hardly spoke this morning, and what she did say was very quiet and more or less unintelligible. Again, it's dark, and I'm not entirely sure she's completely awake. Also, if I'm pretty sure what she wants to say is not going to be socially acceptable, I don't generally encourage her to talk. She got dressed all on her own. I was still working on breakfast, so I got her started and left for a couple of minutes. She was more or less finished when I got back, so that was nice. Hopefully she'll be happy and awake by the time she gets to school.

Yesterday after school she covered her bed with books and perched on the corner again. I think she might sit there because she can see out her bedroom window easily from there, and it's where the heater vent blows so it's really warm. I realized that she never sat there during the summer, but now she almost always does, so that would make sense. And maybe the "exercise" she gets from barely balancing on the corner is good for her. I know I couldn't sit the way she does for as long as she does. I wish I could talk her in to doing other things as well as look at books, but at least she is doing something. Too many days she just retreats into her head and I can't get her to even acknowledge that there is a world out here. So I'm grateful.

We had an errand to run last night, and she came along. She wasn't very excited about it, but didn't really complain, either. After we got back home she got out of the car and burst into tears. I'm not sure what upset her. I don't know if she was cold or disappointed that we didn't do anything fun or if she bumped something getting out or what. She calmed down fairly quickly, so hopefully it wasn't anything too bad. When my boys were little and got upset they could tell me what was wrong. Sometimes I could fix it, and sometimes I could only provide comfort, and sometimes I had to help them just get over it because they were wanting something ridiculous. With Rachel, I feel like I'm usually trying to help her just get over it since I don't even know what "it" is. It might be something HUGELY important, though. If I dismiss things that are truly a problem, and communication with her is so difficult anyway, why would she even try to communicate a problem to me, knowing I'll probably just hug her or offer her a drink of water or something? I feel like I'm failing her most of the time. I have had to learn to let go of guilt. Guilt makes me feel bad and want to give up and it puts a barrier between us that makes things even worse. I have to do the best I can and let it go, but that's REALLY hard. I want to make everything good for her right now, and I don't have any clue how to go about doing that. If you have a toothache and somebody paints your nails, it's not that helpful. If you've got a headache or you're hungry and somebody snuggles you and reads a book, it doesn't really solve the problem. If you have muscle spasms and sit funny and therefore have super sore muscles and possibly some back pain and somebody tries to cheer you up with a cookie, it won't work. If you want some attention, and someone gives you a tylenol and helps you lie down quietly on your bed with the lights dim, it makes the problem worse. You get the idea. I almost NEVER know what's wrong. I just have to look at her and think about what she's been doing and make the best guess that I can and give myself credit for effort. If I let myself feel guilty when I've done the best I can, it hurts our relationship. Hopefully I'm right some of the time. Hopefully she knows I'm making an effort. Hopefully she knows how very much I love my little girl. Hopefully.

"happy switch"

We must ask Rachel "what are you doing?" a lot, because that is one of the most common things she asks people, except she just says "doing?" She started getting out of bed before she was really coherent this morning, and very groggily said "doing?" and looked at me like I was supposed to make sense of things for her. It was cute. She had to be reminded to do everything this morning. She would just stand and wait until I reminded her what to do next. It might have been just that she wasn't completely awake, but it seemed that she either couldn't remember what to do next or she simply didn't care if she did the next thing and was content to just stand there doing nothing. She did her normal morning monologue of "it's not mine. It's garbage. I don't like it. I'm not a girl. You're a girl." She didn't get really upset, but she didn't smile, either. I think we'd get more happy mornings if we could just start a little later. Getting up in the dark is just not fun, no matter how early you get to bed.

Yesterday we had parent teacher conferences. She wasn't in a frame of mind to go back to school while I talked to lots of teachers, so she stayed home. I'm super grateful for awesome teachers! And it's good to have the opportunity to talk to people who see her almost as much as I do and compare notes.

As soon as I got home, Rachel and I went to a Christmas program with lots of Christmas music and food. I was really hoping she'd have a good time. She loves Christmas music most of the time. She wasn't very happy while we listened to the music (which was really beautiful). She usually likes to hold my hand. It helps calm her (and keeps them warm - she has cold hands a lot) and sort of connects us. She didn't want to last night, and she kept mumbling things that didn't sound like they'd be happy if I could understand what she was saying. I gave her a notebook and pen and that kind of helped, although I can't say she really wrote anything. Eventually I gave her a stick of gum, and that seemed to at least minimize the amount of mumbling. Most of the time she loves to listen to music, so it made me sad that she couldn't enjoy it last night. After the music was over I got her some food which she ate quickly, so maybe she was just hungry. The sandwich and cookie were difficult for her to manage without making a little bit of a mess, which upset her a bit. Sometimes she's a little OCD about being meticulous while she's eating and a mess of any kind makes her unhappy. Other times it's like she's lost in a different world and she just randomly drops food and makes a huge mess and doesn't even seem to be aware of what she's doing. I just did my best to distract her so she wouldn't be upset. When I left her alone for just a minute, I looked over and she was laughing. It was like someone flipped a switch, and she was suddenly happy. Later, some friends came and sat by her and spoke with her, which was awesome! She really enjoyed the last half of the evening. She even ate a few more cookies (she put the whole thing in her mouth at once so they wouldn't crumble (she does learn coping strategies!). Fortunately they were small, so it wasn't a problem. She was happy while she got ready for bed, and was fairly focused on what she was doing. Much better than this morning. I just wish I could figure out a way to flip the "happy switch" on. I've been looking for it for 19 years, and I just can't seem to find it.

work

Rachel mostly mumbled this morning. I couldn't honestly understand much of what she said, except at one point she said "it's your work!" We were running a bit late, so I rushed her through dressing. She has taken medicine (for seizures) for almost her entire life, so it's no big deal anymore. I pop the pill(s) in her mouth, hand her a glass of water, and we're done. I'm not sure what the deal was this morning, but she accidentally poured water all down her front. She looked at me like she wasn't sure what had happened and what her reaction was supposed to be, so I laughed and said "oops!" She almost smiled, but not quite. At least she didn't get upset. And fortunately it was before she had gotten dressed, so there was no need for changing clothes. She really doesn't like to "fix" clothes that were put on "wrong." If something gets put on backwards or it doesn't fit anymore, it really makes her mad if a change has to be made. I was also glad (and surprised) that she was willing to take a cue from me how to react. Usually she doesn't even look at me. She had a hard time with breakfast, for some reason. She didn't want to swallow so I had to keep giving her a drink. I checked the glands in her neck and they weren't swollen and she doesn't have any signs of illness. Maybe she was just preoccupied? She went right out to the bus, and she waved goodbye (that always makes my morning).

Yesterday she again covered her entire bed with books. I'm not sure she really even looked at any of them, but she sure got a lot of them out. She used to be able to put them away by herself, but she doesn't seem to be able to anymore. She can't quite figure out how to hold them vertically and put them on the shelf between the other books. They generally end up on the floor when she tries unless I help her a lot. I don't know if the difficulty is in manual dexterity or in mentally understanding the concept.

We went to her school in the evening to meet the people who work with her and see what she does there. They have an awesome program. Right now she is not high functioning enough to do a lot of the things they offer, but that will hopefully change. Her abilities go up and down so much, it's hard to make any real progress. I just want her to be happy. Everyone needs a reason to get up in the morning. Everyone needs to feel that they have something that they can do, that there would be a void somewhere if they didn't get up and fill it. It is easier to feel successful and important if you can look at something, point to it, and say "I did that." Rachel fills a very real role in many lives, but I'm not always sure she can see that. I'm not sure how often she can feel a real sense of accomplishment at a finished task. She used to do a lot more chores at home, but then lost the ability to focus enough to actually do them anymore. I think she's doing a little better now, so I think it's time to give her more to do at home. Giving. Serving. Working. All of those things are a direct way to be happier. I guess it's time for more jobs at home. I'll let you know if it works for her.

Language

"I'm not going to. It's stupid." No happy mood this morning. Even the frosty the snowman sweatshirt didn't do it. Daddy commented on it, and all she said was "Is too, you're a naughty boy." Oh well. Aside from putting her pajamas in the hamper instead of under her pillow, she did everything quickly and on her own this morning. On the way out the door she was continuing her morning commentary "It's bad. Not going. I hate it. It's my birthday, not your birthday." That's kind of what she sounded like all morning. Maybe it's just trying to get back in the swing of things after the holiday break. Her brothers didn't hardly talk at all all morning, but their expressions were very similar to hers.

Yesterday after school she put her backpack away and then went in to use the restroom, as usual. I was a bit busy and forgot to go check on her. I think she stayed in there for about 45 minutes before I realized she hadn't come out. As soon as I reminded her that she needed to finish up she did, but I wonder how long she would have sat in there if I hadn't told her to come out. She got out a lot of books and sorted them onto the end of her bed and then decided to sit down and look at them. She hadn't really left herself any room to sit, so she kind of balanced on about 3 or 4 inches on the corner of the bed while she looked at them. I realized it was starting to get dark and she hadn't turned her light on, so I went in to see what she was up to. I turned her light on and was going to move her books over so she had room to sit, but she REALLY didn't want me to. So I didn't. A half hour later she was still balancing precariously on the corner of her bed. That can't possibly be comfortable, but she objected to any change (This is one reason why her muscles are so much more amazing than mine, by the way). When I called her to come in for dinner she came right away, which is unusual. I usually have to repeat myself or go get her. Maybe she was just unwilling to admit she was uncomfortable, but welcomed the opportunity to move.

We spent some time as a family, reading and talking and eating pie and cookies. We went over the week's schedule and realized it's going to be rather hectic. I guess that's what happens in November and December. I'm looking forward to it, though.

A note on language: If you're a fan of Star Trek (and yes, we're geeks at our house), there is an episode in The Next Generation where Picard gets taken to a planet with one other alien and the two of them learn to communicate. The alien speaks in similes and metaphors, and until they have common experiences they can't communicate with each other (the specific episode is called "Darmok" and it's episode 2 of season 5 -- I did have to look it up, I'm not that much of a geek). That's what communicating with Rachel is like. You have to know what specific words mean to her. You have to know if they have a negative or positive meaning to them, as well as memories associated with them. Then you have to listen to intonation and see her expression, as well as hear the words, to understand her. "It's my birthday" said with a happy tone of voice and expression means something like "I'm happy, things are as they should be, I'm getting the attention I want." When it's said sadly, it's more of a "I was supposed to be happy, but I'm not. I'm either not feeling well or you're not doing what I want or something didn't happen that I wanted to have happen." When it's said accusingly it means "I'm not happy, and you should be fixing that." All of these, of course, with variations. A few weeks ago we went to Costco to buy some groceries. She loves to talk about going to Costco, but she only really enjoys it about half the time. When we go, we try and guess what her mood is and take her or leave her home accordingly. This time it seemed like she'd have fun, so we took her. She was not happy. We really weren't there very long, and we were able to look at some fun things that she normally would have liked, but it just didn't go well. On the way out to the car, she suddenly burst into tears. Between her sobs she yelled "Santa Claus bit me!" I was tempted to look on the light side of this experience (boy did we get a few strange looks) and just laugh it off, but I couldn't. She LOVES Santa Claus. He is the epitome of all that is fun to her. I think she was saying, in the only way she can "this was supposed to be really fun and awesome and for some reason it hurt me instead and I am really disappointed about that and possibly in pain." I wish I could ask for more details. I don't know if she physically hurt in some way (maybe a headache?) or if she was just in a bad mood so it wasn't as fun as she wanted, or what. I get little glimpses into her head if I think about it hard enough, but never any of the details. I'm learning to be bilingual. Slowly. A dictionary or teacher would really help.

reindeer and friends

Nobody likes to be laughed at when they're in a less than good mood, and Rachel is no exception, so I had to watch myself this morning. When I went in to get her up she said "No. You do it." I had to really work at not laughing at her. She moved fairly quickly and didn't have much trouble this morning. She has a rather large collection of Christmas sweatshirts and sweaters, which I start letting her wear after Thanksgiving. This morning after she put her sweatshirt on I asked her what was on it. She looked down, but didn't answer, so I said "is that a reindeer?" She started to smile, and said "reindeer." She really looked like she wanted to smile but didn't want to let me see that she was happy, but she just couldn't help it. Silly girl. I told her, loudly enough for Daddy to hear, to go show Daddy what was on her shirt, so when she went in the kitchen he started singing "Rudolph, the Red Nosed Reindeer." Then she really smiled and said "You're singing that song." A very fun morning. I would let her wear her Christmas sweatshirts all year long if it would make her that happy. Then they wouldn't be special, though, so it probably wouldn't work. And it might be a little too hot to wear in July. Sigh. She went right out to get on the bus. I was even a little nervous because she was walking more quickly than I wanted her to, considering how much snow/ice there was outside, but she was just fine. I probably worry too much. (Hey, I'm a Mom!  I'm supposed to worry! It's my job!)

Yesterday afternoon Rachel's oldest brother and his wife stopped in to say hi, and it seemed to cheer Rachel up a bit. There was more smiling and laughing while they were here, and fewer random obnoxious comments. That makes me happy. I love that my kids love each other. She also had a couple of friends stop by to say hi. They talked to her and read her a book. I left the room so I don't know if she responded appropriately to them or not, but I do know that she was a lot happier the rest of the day. She really notices that everyone else has people come over and visit. Sometimes she says things like "No! Where's my friends?" So it is awesome when people stop in to say hi to her. She was quite happy all evening. She enjoyed watching out the window (there are Christmas lights that she can see now, and it snowed quite a bit, so it's really pretty out there).  She spent some time looking at books in her room as well. Daddy made cookies, but she didn't want any (so maybe her tummy is upset? Where's the instruction manual on this child?????) Anyway, it was a beautiful, happy day. She even smiled at me when I tucked her in bed. She didn't say anything, but the smile was wonderful.

bad words

Although Rachel got to sleep in a bit this morning, I still had to wake her up. Her bed was rather messed up, which is unusual. It makes me wonder if she didn't sleep well or if she was awake during the night. She used to get up sometimes in the night and play. I would usually hear her and go put her back in bed. Sometimes I could only tell because the toys were all put away when she went to bed and when I went in to wake her up there were toys out but she'd be in bed asleep. I don't know what she did last night.

She kept saying "I can't" all morning. She had to be reminded several times to eat. She kept getting food on her spoon, and then just holding it while staring off into space. She did finally finish eating, and was fairly focused while getting dressed. She got a little confused halfway through and couldn't seem to remember if the pajamas were coming off or going on, but other than that she was okay. She was fairly happy most of the morning, unless someone spoke to her. It was kind of the same at church. As soon as anyone said anything to her she would respond with "stupid" or "shut up" or something equally impolite. Usually it was fairly quiet, so hopefully people were unable to hear her. She used to really enjoy social interaction. I'm not sure why she doesn't anymore. At one point during church I smiled at her and she said "Is too, you're a butthead.*" Sometimes I miss her less socially awkward days.

Yesterday she wanted to spend most of her time in her room. She was looking at books. She got quite a few out and really looked through most of them (after sorting them into piles) so I was happy about that. I like it when she really plays. The day was relaxed and quiet for her. She was rather uninterested in lunch, but since she had eaten a good breakfast a little later than usual, I didn't pay too much attention to it. At dinnertime, however, I did become concerned. She didn't eat hardly anything. Usually (lately, anyway) she does one of two things; she either eats by herself without much difficulty, or she doesn't eat without being told to take each bite. If she's having a rough time eating, she'll frequently do what she did at breakfast and hold a spoon with food on it until someone reminds her what she's doing or she inadvertently dumps it on her lap. Regardless of how she's eating, she'll usually eat just fine if someone feeds her. Last night she kept getting bites, but then wouldn't put them in her mouth. She wasn't spacing out, she just wouldn't put it in her mouth. What ended up happening is that she just managed to stir her dinner up into a very mixed up mess and wouldn't eat anything, even when I tried to feed her. She took a few bites, but didn't eat much. She didn't want any pie, either. Part of me wanted to insist she eat since she hadn't eaten much lunch, but the more rational part of me knew that one or two meals isn't going to be a huge issue and if she's getting sick and I insist on her eating, it will definitely come back to haunt me. Literally. After eating breakfast a little slowly she seems to be fine today, so I have no idea what the deal was last night. She was relatively happy during the evening and went to bed without any issues. One more thing I guess I'll never know.

* A word to the wise: I'm not into swearing or using vulgar language. My kids generally comply with my reigning in of their word choices and Rachel doesn't hear very much bad language, so it's not generally a problem. I really hate the word "butthead." A lot. It makes me cringe to type it. I'm not sure where she heard it, but the first time she said it I was determined to make sure that my sweet little girl knew that it was inappropriate and would strike it from her vocabulary. So I made a big deal out of it. That was a mistake. She now knows that she will get my attention if she uses it, and it's a really good way to push mommy's buttons. So she uses it. A lot. And now there's really nothing I can do about it. I can't reason with her, and I can't punish her, and I can't reward her in any way that will make a difference. I have to learn to ignore some things. I'm getting lots of practice. The sad thing is that it's entirely possible that she was mispronouncing a perfectly legitimate word the first time, and I created the problem by overreacting. Oh for a time machine!

Up on her own!

Not only did Rachel get up on her own, she actually came out of her room on her own! She hasn't done that for years. It's so good to see her making choices and acting on them. She wanted to keep looking at books in her room, so I let her play for awhile. She had several small stacks of books on the foot of her bed, doing more sorting than actually looking at them. When I had her come in to eat breakfast, her mood fell apart.

Me: "Sit down. Let me get you some breakfast."
Rachel: "I don't want to. I'm not here."
Me: "So where did you go?"
Rachel: "I'm gone. Someone killed me."

Where on earth did that come from? I really think she equates "killed" to "gone," but it's not a word that is used that often around here, so I'm not sure where she picked it up. She started crying, and I finally got her calmed down a little so she could eat. I encouraged her to take a bite and she glared at me and bit her finger as hard as she could. Then she said "I don't like my finger." I so wish I could communicate better with her. I think if we could she wouldn't get so frustrated and angry. She cried a bit more, then ate her breakfast and has been okay since then, just playing with her books in her room. I wondered if she just didn't want to eat yet, but she'd been awake for an hour or more by the time she ate, and when I went in to get her she came readily enough. It's a little frustrating, to say the least.

Yesterday she spent most of the afternoon playing with some pop beads. She puts them together and pulls them apart, which is a really good exercise for her fingers, but most of the time she just puts them in piles. She sorts them by color or shape or size. That's probably good for her, too. She had kind of outgrown that for awhile and had moved on to more complicated play, but now that seems to be about as difficult as she's willing/able to achieve. It was good to see her play.

The guys are getting the Christmas lights up today, which is one of her favorite things. Hopefully the day will get better.

Thanksgiving

Thanksgiving morning we got up and dressed, finished up what we were doing for Thanksgiving dinner, jumped in the car, drove for 2 hours, and spent the rest of the day with family. It was awesome!!!

Today and yesterday Rachel got out of bed on her own and got books out to look at. That's three days in a row! The wonderful thing about that is that she is not just waiting to be acted upon, but deciding something that she wants and doing it on her own. The other cool thing is that over- or under-sleeping can cause headaches, and I'm clueless about how much sleep she needs or gets. If she gets up on her own, I figure she got about the right amount. She has been a little happier the past two mornings, as well. There is still the "It's my birthday. It's not your birthday. It's mine. This is stupid." going on, but there were also some smiles and cooperation.

Earlier I mentioned her sore knee. I don't know if I looked at it in bad lighting or if it just took a little while to show up (probably both), but she does have kind of a nasty bruise on her knee. I'm sorry it's hurt, but a bit relieved to be able to know what the problem actually is. She must have fallen at school. She hasn't mentioned it since, so it must not be too bad anymore.

We had Thanksgiving dinner with my family. My Mom, most of my sisters and their husbands, children, and grandchildren (none of my brothers or their families could make it this year) were in attendance. We borrow a church for the day, because we don't all fit in a house anymore. It was so much fun! Rachel didn't talk much, she mostly just wandered around and watched people, but she really enjoyed herself. She acted quite prickly whenever anyone talked to her (turning away, saying things like "No. It's mine. You broke it.") but most of the time she smiled and watched. My Mom and sister brought some plastic beads and some yarn for the kids to string and make necklaces. Rachel did that for almost an hour and made a necklace that she wore proudly for the rest of the day. At one point she was moving in a very different way. I'm not sure how to describe it, but I think she was dancing. She had her back to me and I went over so I could see her face to make sure she was okay, and she acted embarrassed and quit moving, so I think I was right. Then I felt bad for interrupting her.

After we ate and talked and ate some more and cleaned up, it was time to go. It was freezing cold (actually never got above freezing all day) and so she wasn't overly thrilled about leaving, but she did okay. We stopped at another aunt and uncle's house on the way home and ate some more pie, and then came home and went to bed. She seemed like she had a really good day. I know I did.

I overheard someone the other day objecting to someone "belonging" to someone else. I think it was a child belonging to a parent, and they didn't like that specific terminology because it implied ownership, and therefore slavery. I see it differently. If something belongs to you, is a prized possession, you take care of it. You watch over it, protect it, make sure that it is in a good environment, and it has what it needs to reach its potential. It you had a Da Vinci painting you would certainly not leave it where it could get damaged or taken. Sitting there in the middle of so much family, I felt like we all belonged to each other. We all take care of each other and love each other, even with all our idiosyncrasies and faults. I know that we'll all be safe with each other. Even if Rachel is doing weird dance steps in the middle of the floor and yells "It's stupid" when someone tries to talk to her, they love her and pray for her and would do anything for her. In return, she teaches them about patience and unconditional love and to be grateful for the many things that they are able to do. We belong to each other.

Right now Rachel is looking at a catalog from a local store (one of her favorite things to do). Her left hand is twitching (her fingernail on her ring finger is totally buffed from rubbing on her thumb so much), and she alternately looks at the catalog and out the front window. I think she's happy, but I really wish I could hear what is going on in her head. I hope she knows how much she is loved. I am truly thankful for my little girl.

lazy

I love lazy mornings. Daddy had to go to work, but not until 9, and the rest of us got to sleep in. I got up and worked on some projects and let Rachel and her brothers sleep in. When I went in to wake her up she was sitting up in bed looking at a book. She had gotten out of bed, got a book, and crawled back in bed where it was warmer to look at it. That made me so happy! She will usually just lay in bed until I come and get her out. I immediately smiled and told her how awesome her book is and tried to make sure she knew that was a good thing to do, but she somehow has it in her head that I didn't want her to do that. As soon as I came in the room she started saying "No. It's my book. Not your book. You're rude. Go. My Book." I tried so hard to let her see me smile and I even tried to get her to show me what she was looking at and made sure I didn't take the book from her, but I'm not sure it got through. She still seemed to be in a fairly good mood all through breakfast, however. She ate her food just fine and even said "please" when she wanted more. Then she soaked for awhile in the bathtub. Most of the time I'm in a hurry to bathe her at night, so when I can I like to let her relax. As I said earlier, her muscles are so frequently tight, I like to give her a chance to relax them, and then I try to help her stretch them a bit. Hopefully it helps.

Yesterday after school she seemed tired. She kept saying her knee ("me") hurt. I couldn't see anything wrong with it, but I'm keeping an eye on it. She scraped it a year or more ago and there's still a little bit of a mark where the scrape was and that's where she says it hurts, so I don't know if she's remembering, or if there is something really bothering her. She said it several times, so I guess I'll just see if she brings it up again today. I could take her to the doctor and say something like "Rachel says her knee hurts, but she might just be remembering something that happened a year ago. She won't respond properly if you try to find out where and if it hurts, you just have to try and guess by facial expression. She has a very high tolerance for pain, but she's kind of ticklish. Tickling her doesn't always make her laugh, sometimes it makes her face look like you're hurting her. Could you please figure out what if anything is wrong with her knee?" I'm so grateful for good and patient doctors who really care and understand. We've been fortunate to find a lot of them. Hopefully the knee thing will just go away this time.

We went out last night to take her brother to a friend's house and to get a few groceries. She wasn't excited or unhappy about it. It was starting to snow and she wasn't very fond of it blowing in her face, but other than that she just kind of followed us around. I ended up putting her to bed a little early because she seemed tired. Usually when she can sleep in I let her stay up a little bit later, but staying up isn't fun when you'd rather be sleeping.

We were supposed to have a blizzard last night. Some of the freeways were shut down and businesses closed early. All around us there was snow and wind and whiteout conditions. We had a few flakes. The only city around that had zero inches of snow. I was kind of disappointed. If it's going to be this cold outside, there should be snow.

Monkey

"I don't want to go" (said as she's climbing out of bed and heading into the bathroom). She has a monkey (Daddy brought home from a conference he had to go to) a bunny (Grandma gave her one year for her birthday) and a dog (given to her by her oldest brother and new sister in law) that she sleeps with. They're all fairly small, so they don't take up too much space in her bed. When she gets up, she almost always puts them on their backs on her pillow. Part of the OCD thing, I think. Then she goes and uses the restroom. While she's gone, I usually make her bed. This morning I couldn't find her monkey. I know she had it when she went to bed, but it seriously wasn't anywhere in her bed or on the floor. I finally gave up looking and just made her bed and laid out her clothes. When she came back in her room she had the monkey in her hand. Me: "Oh, there's your monkey!" Rachel: "Floor!"  She laughed. I think that's the first time she's laughed in the morning for a very very long time. I guess it got tangled in her pajamas somehow while she slept and then fell on the floor in the bathroom. It was great to have her so happy first thing in the morning. Generally speaking, she isn't a morning person. She stayed in a fairly happy frame of mind until I was putting her coat on.  "It's not yours. You're rude. You're not going. It's my birthday. It's not your birthday." She waited for her bus and got right up when it got here and didn't have any problems with getting on. She even waved to me (I suspect the bus driver told her to, but it was still awesome).

Yesterday when she came home from school she was in an okay mood. I asked her what she did in school and she said that someone bit her. I would be a lot more concerned about that if she didn't frequently accuse me and her brothers of doing things that we haven't done. I've worried at times that my neighbors must think we're awful, especially in the summer when the windows are open. She will be in her room screaming "Don't! That hurts! Stop it! Get out! Go Away! Don't do that!" when no one is even in there with her. Sometimes she'll yell things like that while I make her bed. She's said her brother bit her when he wasn't even here. So I always look for evidence of something wrong, but have never found any. It really makes me wonder where the accusations come from. I hope those aren't scenes that she's playing in her head. I really hope that she daydreams happy thoughts. When she was little and I asked her where she hurt, she would always look for a bandaid or scratch on her body. We would sometimes let her wear bandaids just because she liked them, so there frequently wasn't even a scratch underneath them. She used to get sick a lot, and I had to try and communicate with her to find out if her tummy or her head hurt. It never worked. One time when she had strep throat I didn't realize she was even sick until she had a seizure, because she didn't communicate to me in any way that she wasn't feeling well and she didn't develop a fever until later. She ate taco chips without complaint an hour before I took her to the doctor and he commented that her throat was so swollen he couldn't figure out how she was eating anything. When I touched her throat and asked her if it hurt, she looked all over her arms, found a freckle, and pointed to it as the place that hurt. She's a little better now. She will say that her head hurts when she's got a headache, but I don't think she really understands pain that doesn't have a scratch or something where you can point to it and say "that's the owie." So I wonder if sometimes when something hurts inside her and she can't point to where it hurts, she comes up with a scenario to explain the pain. Someone hurt her. Someone bit her. She needs to have something concrete to say "this is what caused me to hurt, and this is the spot that hurts." Anyway, that's my best guess. Life is so often a complete guessing game around here.

I couldn't interest her in books or coloring or anything during the afternoon or evening, but most of the time she had at least a slight smile on her face. Towards the evening her right hand was especially claw-like. Her left hand frequently is that way, and it twitches a lot. Her left leg frequently twitches, too, and all her muscles get tight. She has amazing muscles, by the way. Especially for someone who sits so much. She just hardly ever relaxes her muscles. Anyway, last night her right hand was contorted and the muscles in her arm were tight. That's unusual. She kept looking back behind her to her left, and then up at the ceiling. Every 5 to 10 minutes or so I would notice that she was almost tipped over to her right. Just saying her name would call her attention to it and she would sit back up, but then fairly soon she would be twisting and leaning again. I haven't decided if she does that more when she's tired or not. I know that if she's really engaged in doing something (coloring or looking at books or something), she doesn't twist or twitch very much, but the more she gets lost in her head, the worse they get. That is one reason why I like her to be engaged in activities and not just staring out the window. Although if she's really watching something outside (like kids playing) it works as well as a book.

She was happy to go to bed last night. She smiled at me and said "night" as I was turning out her light. I don't get to watch her sleep much because if I open the door at all it wakes her up, but seeing her lying there in her bed with her animals all tucked in with her and a smile on her face is one of the "pictures" I save in my mind (and heart). My beautiful angel.

Hair and Hugs

"I can't do it." Those were the only words she said this morning until she was mostly dressed. Her hair got tangled up in her shirt and she started repeating "My hair is messed up" until I managed to untangle her. Things would probably be a lot less complicated if I cut her hair. Right now it nearly touches her chair when she's sitting down. I think about it from time to time, but it's just so gorgeous I can't bring myself to do it. I'm pretty sure she likes it long. I know she doesn't like it short. When she had bangs they drove her crazy. I think they tickled her face.

I've found that if I watch her get dressed she will wait for me to tell her what to do next or act helpless to see if I'll do things for her. If I leave and she gets tangled up in her clothes or with her hair, we sometimes end up running late. So I usually stay in her room and make her bed and pick up her toys, etc., while she dresses. That way I can "ignore" her, but still be on hand if she needs me. If I finish before she does, which happens frequently since lately she hasn't been getting toys out and she hardly moves when she sleeps so making her bed consists of flipping the covers up and putting the pillows and stuffed animals on it, I leave but come back frequently to check on her. It works fairly well. She didn't seem to be in a bad mood this morning, but was fairly uncommunicative.

Every third Sunday we have cousins come over for dinner and to talk. She loves her cousins. I couldn't get her to interact or smile most of the afternoon, but she laughed and smiled and ate and generally had a great time while her cousins were here. It was good to see her happy and involved. She didn't talk very much, but she was interested in having people here. Frequently when we have a lot of people here she will go in her room. If she hears people laughing she will laugh too, but she stays in her room most of the time. Yesterday she stayed in the group, even following from the kitchen into the living room. That made me happy. She seemed to really have a good time. She ate dinner just fine, but turned down dessert, which is unusual. I guess she was just full. I probably shouldn't have eaten any either.

She is usually happy to go to bed, but last night she kept saying she didn't want to. She wanted to stay up, although by the time I put her to bed everyone else had gone home and she wasn't really doing anything anymore. Once I got her tucked in and turned her music on she seemed okay about being there, but she objected all through the getting ready for bed process. She so seldom expresses a desire for something specific lately I was tempted to let her stay up for a little while, but Mondays are hard enough as it is without being super tired on top of it, so to bed she went.

Something I've discovered (actually quite a while ago); no matter how frustrated or angry or annoyed we are with each other, she and I, if I take the time to wrap my arms around her and just hold her for a minute, all that disappears. When she screams at me (or bites me) or when I'm insisting that she do something she doesn't want to, just taking a minute to relax like that together seems to set it all right. It works fairly well with the rest of my family, too. I haven't tried it with anyone else (I think people who don't know me might be uncomfortable, possibly), but I seriously wonder if it only works with people you already know and love. Since I'm not likely to hug someone who is annoying me that I don't know, I guess I probably won't find out.

Ups and Downs

This morning at home and all through church we endured a litany of all the worst words Rachel could come up with. Fortunately she doesn't know any really bad words. I was told it isn't my birthday, I can't come, to shut up, and to go away. Obviously she's not in a good mood. When one friend said hi to her she simply said "puke." Lovely. I'm glad she's at least relatively quiet and that most people are willing to just ignore the inappropriateness of some of her words.

Yesterday we had some errands to run that were going to be relatively quick and not very fun, so we left her home with her brothers and she watched a movie. While I was fixing dinner and throughout the evening it was evident that her happy mood of the morning was gone, and I wondered if it would have been better to take her with us when we went out to give some variety to her day. She loves shopping when she's in the right mood and we do things that are fun, but not so much when it's boring, so I thought she'd have more fun at home. Who knows.

We decided to watch another movie last night. I'm not a big fan of lots of movies and especially not a fan of TV, but if the options are staring at nothing (which is what she was doing) or at a screen, I think the screen is probably better. She was obviously watching because she said "ouch" when someone got hurt, and she laughed at the appropriate times. We took a break and got a snack. When offered a cookie she said "butt head. kill you." So she didn't eat a cookie. Not sure where that came from. After her bath I was helping her get ready for bed and she bit my finger. Hard. It hurt a lot. She's only done that once before and it was years ago, so I wasn't exactly trying to protect my fingers. There wasn't any indication that she was going to bite me, but I could tell from the look on her face that she was angry. I'm still not sure at what. It would be so wonderful to be able to sit down and talk to her and figure out what's going on in her head and what is bugging her. It's nearly impossible to solve a problem when you don't know what the problem is. Right now she's sitting by the window looking at the same magazine she looked at yesterday, but not turning any pages. In fact, I'm not sure she's really even seeing it. Her left hand is all clenched and her head keeps turning. There's almost no expression on her face, and she won't interact with me. Hopefully things will get better this afternoon.

Happy

"You're not going." I'm not sure where I'm not going, but apparently she wants to go alone this morning. We slept in, and then she ate her breakfast before getting dressed. She took her time, and kept a running monologue going throughout the whole process. It was difficult to hear and understand her, since the guys were discussing football and scout projects, but she was smiling and talking. I heard snippets about girls and birthdays and friends. She happily and quickly dressed, and then went in the living room, found a "bookzine" (magazine) and has been happily looking at pictures and talking about them ever since. "That's a girl. She's running. She has hair. It's long. I have long hair. That's a boy. He's hiding. He's laughing." She's obviously very engaged in the magazine and not just willing, but actively wanting to share the experience. It's the best morning all week!

Yesterday after school she wasn't interested in doing anything but look out the window. It took her a very long time to eat her dinner, but she did it by herself, and she did finally finish. We watched a movie after dinner and she seemed to really enjoy that. She watched most of it, and laughed quite a bit. Sometimes she laughed even before we did, so it wasn't just the "laughing because you are" kind of laughing that she frequently does. She twists and turns her head a lot. I'm not sure what causes it, but if she sits much she tends to turn so she looks behind her, and up. The more she is engaged in what she is doing the less she twists. Occasionally she turned around last night, but when I said her name she would immediately look back at the TV. She enjoyed a cookie and went to bed quite happily.

She's still discussing her magazine and smiling. "It's my dad. It's me. That's pink. Is that funny? Rachel's funny." Definitely an awesome morning.

shots

"What are you doing?" "I'm not going to go." "I'm a girl. It's not for girls." "I don't like this." "This is bad." Lots of words this morning. Not necessarily interactive, but it helps me to know what's going on in her head. She wasn't angry, as none of it was said at all passionately. She just wasn't in a happy mood. She had no trouble getting dressed or eating her breakfast (and her teeth are sparkling clean! Yea!). All in all, a relatively good morning.

Yesterday I picked her and her brothers up from school and we went and got flu shots. Yeah, that was fun. I didn't tell her ahead of time what was up because 1. I wasn't sure she would understand me even if I told her and 2. if she did understand it would just make her upset and make the whole project even more difficult. So she went first. She's had her blood drawn to test levels of medication more times than I care to think about, so she understands needles. This was less dramatic. I think seeing the bandaids on the table in front of her helped (they are her favorite accessory - much better than necklaces or earings) but also, they didn't have her sit down. She hates sitting down on the exam tables in doctors offices. Especially if they have the crinkly paper on them. She has enough experience to know it's probably not going to be fun. The chairs she sits on when they draw her blood are pretty intense, too. So Just pushing up her sleeve, a quick poke and she's done was a lot less traumatic. And then she had the barbie bandaid and a sucker, so she was pretty happy. I thought maybe it would make it easier that we were all getting shots, but it was so quick I don't think she noticed. Anyway, one possibly traumatic experience taken care of without any drama.

Once we got home, she was content to sit in her room and stare out her window. She didn't even notice when it was starting to get dark and I turned her light on. I wish we could go back to the days when she played with her toys and made messes. Maybe tomorrow. At the very least I wish I knew what she was thinking about all the time. What she daydreams about. I hope she's happy inside her head.

She ate her dinner without difficulty, had a bath, and went to bed early to make up for the last two nights of being up a bit late. The concern I have is that she doesn't get up out of bed until I get her up in the morning anymore, so I have no idea how much sleep she actually needs. She's a very light sleeper, so if I peek in at her it wakes her up even if she was asleep before. I don't know if she goes right to sleep or if she wakes up in the night. I have no idea how much sleep she's getting and if it's too much or not enough. She complains a lot about headaches, which can be caused by either of those. I seriously need a personalized instruction manual. The guessing game sometimes gets to me.

solos and skittles

Another tired, quiet morning. She said "no" a couple of times, and that's about it. I had to remind her that she was getting dressed once or twice, but she didn't seem to have any difficulty remembering how to do it or where things went, which was nice. I let her sleep as long as possible, so there wasn't very much time to observe her (except that she looks absolutely adorable in her bright pink turtleneck sweater).

Last night was the closing night of the play, so we went again. She seemed happier last night, and didn't get quite so upset at people, but still wasn't interested in talking to any of the friends who came over to talk with her. I was well armed to pop something in her mouth if needed, but mostly she was quiet. Until "the solo." I need to remember that she won't sing with M&Ms in her mouth, but skittles don't have quite the same effect. She ended up with a mouthful, and she was still trying to sing. I suppose it's possible that it was just that she was aware it was coming this time, and was determined to participate. I'm really torn, too, because I am so completely pleased that it affected her in that way, but trying to be a conscientious audience member and keep her quiet. I think we'll have to rent the movie and see if it has the same effect on her. It was an awesome evening and we came home and popped her right in bed, so it wasn't too late.

I failed to mention that Tuesday evening she kept telling everyone that they were rude. I am so totally grateful for people who continue to come and talk to her and love her even when she is so cold and prickly. I really hope she makes up for it when she's in a better mood. I know she does at home, but I don't know if she does at school. It makes me feel so good to know that there are so many people out there who love my little girl, cold pricklies and all.

So I brushed her teeth with oatmeal, and sent her off to school...

I didn't get a single word until she was mostly dressed this morning, and then it was something murmured unintelligibly against her arm when she inadvertently stuck her arm through the neck hole of her shirt and couldn't get it back out. Fortunately her shirt was stretchy and had a wider neck on it, or it would have been an even worse predicament. I think the lack of communication this morning could have been that she was truly tired. We went to a play her brother was in last night, and then ate cookies, and then she had to have a bath. She threw a bit of a tantrum on her way to bed, probably because of how late it was. After she'd been in bed for a bit the rest of us were going to bed and I could hear her laughing. I kissed her goodnight again and we went to bed. Hopefully she slept after that, but it was pretty late. If she laughed anymore I wasn't awake to hear it.

I am not aware of anyone else who can stand to have something stuck in between or on their teeth, but it doesn't seem to bother Rachel. When she eats something and it sticks on her teeth it just stays there until I brush them. It doesn't even have to be sticky. After she finishes eating and before brushing her teeth I always make sure she drinks something to clean them off a bit. We were running a bit late this morning and I had to brush her teeth quickly because the bus was waiting. Apparently the drink of water hadn't washed the oatmeal off her teeth, because after the first swipe the toothbrush had far more oatmeal on it than toothpaste. Mmmmm, toothpaste and oatmeal. Unfortunately I didn't have time to do it again, so hopefully it was enough to at least get her by until she gets home. I just need to quit thinking about it. Yuck.

Yesterday Grandma and Grandpa came. She smiled more and laughed more, but she turned away and wouldn't really interact with them. Or anyone else. She only barely acknowledged they were here. At one point she was in the other room and started laughing, but then it was hard to tell if she was laughing or crying. It sounded a little creepy, and I never did figure out what emotion she was displaying.

During the play she laughed when everyone else did (that's fairly normal), and I think she recognized her brother on the stage. I absolutely love her laugh. It just makes me smile. It is, unfortunately, a little loud at times. And sometimes she laughs at inappropriate times. Daddy bought some M&Ms during the intermission, and they came in handy. If she was a little loud, I would just pop one in her mouth and she would focus on the chocolate. Truly a girl after my own heart. There was one solo that seriously inspired her. Part way through I noticed I could hear something, and then I realized that Rachel was trying to sing along. As adorable as it was, I was grateful again for chocolate. If we had been home I would have encouraged her to keep singing, but not everyone has the same taste as I have in music. I know, they're the ones missing out, but it seemed best to keep her quiet.

She saw friends at the play, but wouldn't look at them. She responded negatively to anything anyone said. The thing that made me the saddest is that she kept saying things like "I'm a bad girl" or "I'm dying" or "I'm sad." I don't think she really means what she's saying, but it still makes me sad. When she says "I'm a bad girl" I think she means she feels bad, and she's a girl. I don't think she understands what dying means, just that it's got a negative connotation.

I didn't get the interaction I was hoping for with the visit from Grandma and Grandpa, but at least she smiled and laughed (and sang!). Now I think I'll go brush my teeth. Again. Without oatmeal.

Quiet

"I can't." Said in almost a whisper. But again, she got right up (and in her defense, that was more or less what I thought when the alarm went off). Aside from a little confusion with where to put her pajamas (they go under her pillow, not in the hamper), she dressed quite quickly and efficiently once she got going.

It was a fairly uneventful morning, as was the afternoon and evening yesterday. Not really worth another post. She didn't want to do anything but watch out the window. I tried to interest her in other things, but didn't even get a response. These are the hardest times. About 6 years ago she went through an entire year of slowly deteriorating. She had been a very interactive, outspoken child, in spite of her autism. Then after about a month, most of which she spent crying and hallucinating, she just kind of disappeared. Her hands turned into claws, we were lucky to hear a few words a week, and if left alone she would start to tip over and drool. It was heartbreaking. The doctors couldn't figure out what was wrong, but didn't offer any hope that things would get better. But then they did. After about a year of watching her deteriorate, she started talking and coloring and smiling again. She steadily improved and we have loved every minute of it. This last year she's had more trouble, though. It hasn't been as dramatic as the last time, but some days she still disappears. Some days she can't talk, feed herself, or remember how to get dressed. And some days she can. I hate the days when she can't function. I'm so afraid she won't come back again. So while I'd much prefer her happy, smiling days to her angry, fitful days, the worst days are the days when I look in her eyes and can't see her in there, and I listen for her, but there is no sound. Those are the days I miss my girl, even when she's right next to me.

Last night and this morning have been very quiet, but when asked she has been able to do things for herself. She ate dinner without help or even much reminding, and when she went in to use the bathroom she came out on her own (sometimes she'll just stay in there until I go remind her to finish up and come out). She's still here with us, just very still and quiet.

Today Grandma and Grandpa are coming to visit, so I'm really hoping she'll laugh and talk and play. I'm keeping my fingers crossed.

Beginning

Me: It's time to get up, babe.
Rachel: Why? I don't want to. (only it sounded more like "Idonwanoo")

But she got up quickly. No exclamation marks this morning. No anger. And there were words, which always makes me happy. Lately we've just heard a lot of the word "no." Not even an impassioned "no." So this is good.

Finished in the bathroom, she got dressed relatively quickly. "It's not my shirt. It's not a girl's shirt. I don't like it." All quietly but clearly spoken. She only had to be reminded a couple of times to stay on task, and did it all herself today. To my comment of "look, Rachel, it's snowy outside," she only replied "It's not for girls. It's stupid."

She quietly mumbled something unintelligible while I brushed her hair, and dutifully ate her pancakes and applesauce. (note: since the bus comes at the unearthly hour of 7:00 or 7:20, depending on the day, I have given up on having her feed herself breakfast on school mornings. My desire to make sure she actually has food in her overcomes my desire to give her autonomy.) She didn't complain about the brushing of her teeth, either. I would have liked a little bit more emotion out of her, but at least she made eye contact and spoke to me. The negative aspect of her language may just have been because she was tired. Or maybe she really doesn't like her red and white striped sweater anymore. It's really hard to tell.

She waited patiently for her bus, and then left without another comment.

I was hoping for a wave from her, but was disappointed. I think she looked at me, though.

I love you, Rachel. I hope your day is as beautiful as you are.