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.