And she's gone....

Last Thursday Rachel had a seizure at school. It wasn't long, and didn't seem to bother her very much. I picked her up and she took a nap for an hour or so when she got home, and then she seemed more or less back to normal. Whatever "normal" is. I put her to bed an hour or two before we went to bed, but she got up when we were going to bed (which very rarely happens) and while I was tucking her back in bed I noticed a small wet spot on her pillow. It might have just been drool (not particularly normal for her), but it also might mean that she had another seizure (she always drools when she has a seizure). I don't think she slept well, so I kept her home on Friday to keep an eye on her. she seemed like she was fine, but was more tired than usual. She's been talking a lot more lately, and has been more interactive. With that usually comes a few more meltdowns (more than fair trade-off in my opinion). Friday night we went to a play her brother was in and she fell apart right before I took her in to sit down. I finally got her to calm down, and then she was fine. Saturday night we went to a Christmas party and she saw a friend she's known since she was 12, but hasn't seen for a long time. She smiled and talked with her and even called her by name! I have been enjoying her so much lately. I feel like I can almost have a conversation with her, and she's interested in things and excited. Sunday was an up and down day, but mostly up. She talked a lot about monsters and spiders, but she was mostly happy and interactive.

Sunday night as we were going to bed I heard her in her room and went in to check on her. She was sitting up and I think she was laughing. She kept saying "it's funny!" over and over, but I couldn't get her to look at me, and I could tell she wasn't really "there." Monday morning she just smiled quietly all while she was getting ready for school, but didn't talk and I had to do practically everything for her. I hoped she was just tired, but her teacher called from school and said that she seemed really confused all day, and wondered if she's always this way after a seizure. The answer to that is no. She does this sometimes, but I haven't been able to find a reason for it. Her abilities come and go, but even for her this is a dramatic change. She didn't hardly eat anything, and had to be fed or reminded to even eat what she did eat. This morning she was sitting up in bed when I went in to get her up, but I have no way of knowing how long she had been sitting there. She couldn't seem to figure out how to do anything. Even vocal prompts didn't help, and I had to physically help her do everything, so I decided to keep her home. For the last two hours she's just stared out the window, and I can't get her to say more than just a word or two, and not anything that really makes sense. She is rocking back and forth, which is unusual for her. If I call her name she will sit up straight, but then immediately goes back to rocking. Her face is a little bit flushed, but she doesn't have a fever. I'm taking her in to the doctor in just a bit to see if he can find anything obvious wrong with her. She doesn't always say anything when she's sick. I'm hoping we can figure something out soon. The silence and the vacant stare break my heart.

Obsessions

Rachel's bus comes about 7:05 in the morning, so we're usually in a hurry. I only get her up 20-30 minutes before she needs to leave because I want her to get as much sleep as possible. The easiest answer would be to put her to bed earlier, but that doesn't work because she doesn't go to sleep if I do. She gets up and plays, or lays there in her bed and talks to herself, which is honestly really cute, but not very restful. The biggest problem that I have with her in the morning is that when she's tired, her obsessive compulsive nature kicks in overtime. This morning when she got out of bed she wouldn't go in to the restroom until she had carefully laid her bunny, monkey, and dog that she sleeps with on her pillow. In a line. And it had to be straight. I kept telling her it didn't matter because I was just going to move them to make her bed, but she "couldn't" let it go.

She has gotten a lot better at dressing herself again. I can lay out her clothes and she will usually get them all on in the right order relatively quickly. At night I can even just ask her to go get ready for bed and she will go use the restroom, find her pajamas under her pillow and put them on. She even puts her dirty clothes and shoes where they are supposed to go, and hasn't even had too much trouble if her pajama top was wrong side out. She was able to fix it and put it on by herself. I am thrilled and happy for her. It certainly makes my job easier, but even more important, it gives her a sense of accomplishment and independence that I know she enjoys. So this morning she was getting dressed, but it was taking forever. I finally went in and watched her and realized she was doing the "pull up, adjust, pull up again, readjust, pull up again, adjust once more" thing with her underwear, pants, socks, pretty much every item of clothing. I finally sat with her while she dressed and finally got her fed, her hair combed, teeth brushed, etc., just as the bus pulled up. I was trying to grab her coat and backpack to put on her, and I realized she had disappeared. I found her in her room, trying to hang a balloon on a knob on her dresser. She brought a helium balloon home a week or more ago, and so we looped it on the knob so it wouldn't fly up to the ceiling where she couldn't reach it. It's been laying on her bedroom floor for awhile now, and I was trying to decide when I could get rid of it without making her sad. This morning she was determined to hang it on the knob so it would float again. How do you explain to someone who can't really understand, why a balloon won't float anymore and that their bus is here and they have to leave right now, when she's obviously having an obsessive compulsive kind of a morning and "needs" to have the balloon put away to feel comfortable? I finally got her coat and backpack on her and got her out the door. She wasn't complaining on the way out, so hopefully she mentally moved on and can have a happy day. It's so tempting to keep her home when she's not super happy. I don't know if I'm trying to protect her or the people with whom she will interact, but I feel the need to be the one responsible for her if her world isn't in order. I've had to let go of that a lot because she needs to get out and be with other people. It's not healthy for her to be home with me all day, and I love that her horizons are broadening, so I give her a hug and a kiss and send her out the door and hope for the best. For everyone. She waved goodbye, so I'm hopeful.

Connections

This morning while getting dressed Rachel said "My shirt is jello!" She was quite excited about it, but quickly moved on to something else, and I was left to try and figure out what she meant on my own. While things she says seem completely random, usually there is an explanation. If I can get her to keep talking about it long enough I can usually figure it out. For instance, the other day she said "my pants are frosting!" Obviously, her blue jeans are not made of frosting, but as she continued talking, I picked up on words like "Cookie Monster," "blue," and "cake," and I realized that she was referring to the fact that her jeans were blue, just like the Cookie Monster cake we had seen, and it made perfect sense. We don't eat jello that often, but usually when we do it's red, and since her shirt was red this morning, that was probably the connection. I can't be sure, however, because her thought processes aren't always that direct and easy to follow.

Her insults tend to be calling someone something that they aren't, for example, calling her brothers girls, or calling me a grandma. She loves her grandmas, and usually girls rule in her world, but she understands enough to know that she is mislabeling us, and since that is usually not a good thing, it's a way for her to express her displeasure. When she is unhappy about herself, she calls herself a boy. I am truly grateful that she has found a way to express her feelings. She may not be able to pinpoint exactly how she is feeling, but she is able to at least let us know when she is having a hard time. When she went through a phase of being totally uncommunicative/passive it nearly drove me crazy because I would try everything I could think of to make her happy, knowing full well that I could be having just the opposite effect on her, and I had no way of knowing.

She frequently assigns colors and animals or characters to people. The other day she was a blue princess and her brother was a green frog. I don't have any idea how she decides these things, but very seldom does she assign the same color or character to two people at the same time. If she's annoyed with someone they get the animals and colors she doesn't like as much. Since her favorite colors and characters change a lot, it's not always easy to tell if what she says is positive or negative, though. Frogs used to be yucky, but she really likes The Princess and the Frog now, so sometimes they're good.

On a completely different note, she was talking about her birthday (something she does almost constantly) and has made a fairly consistent request. She wants a new boyfriend. Typical twenty year old girl? She also has a guest list for her party. It includes Frodo, Anakin, and Data. I didn't realize how truly nerdy (or is it geeky?) our house is. Those guys are her favorite heroes. I think it's interesting that she chose Anakin over, say, Han Solo (my choice), but I think she is referring to the little boy Anakin. He really appeals to her. I'm not sure why Data is her favorite of the Star Trek actors, but I agree he's fun to watch. Growing up with all brothers has definitely influenced her. She can talk about Star Wars fairly readily, but doesn't even know who Mr. Darcy is (how completely sad is that?).

I am sincerely grateful that she is talking. Sometimes the constant stream of words coming out of her mouth make it difficult to concentrate on something I am trying to do, but it sure beats silence. Hands down.

life is good

 Fortunately, life has been great around here lately. Rachel has been talking and eating (her pants are even fitting again) and messing up her room. Unfortunately, I haven't bothered to write about it. Apparently when things are going well I just enjoy them, and when things aren't going so well I write about them. I am trying to change that and document the good times as well as the difficult ones.

A few days ago Rachel, her dad, and I had to go run some errands. She was in a good mood and enjoyed looking at things at the store and commenting (loudly) on a lot of them. One of the things she does frequently is comment about people. "Look, there's a boy. He's a cute boy." Sometimes she talks about clothes and colors, and sometimes she'll say things like "He date me" or "He marry me." That gets some looks occasionally. One thing she does often that is either super embarrassing or super funny (I choose to see it as funny, since I can't seem to get her to stop) is commenting on specific clothing items. She frequently says (again, loudly) "Look at that boy. He's wearing pants!" as if that is such a novel idea she's never even seen it before. I instinctively want to explain to everyone in the vicinity that yes, we do indeed wear clothes at our house, not just occasionally or frequently, but all the time! However, I think that would just make things worse, so I just smile and agree with her and move on. She makes me laugh.

Throughout this trip her dad had been teasing her and tickling her a bit. When we got home I was helping her take off her coat and hang it up and she leaned close to me and said with a very teenage-girl-conspiritorial-look "Mom, Dad's being weird." She had the cutest smile and was so happy, it just melted my heart. She is such a daddy's girl. Always has been. I love it when she is in a good mood and interacts with him.

When I get her up in the mornings I usually get comments from her lately. Mostly things like "it's not my turn" or "it's not my job" or "I can't do it" or "I'm not ready." The other day she didn't say anything until she got to the door of the bedroom. She then turned around and with a very serious expression said "We don't say 'pee.' It's (dis)gusting." Then she turned and walked out of the room. I wish so much I had been able to record that. It was the funniest thing she's done in a long time. Having been raised by a mother who had a dislike of anything crude, I very seldom use words like that (can't always say the same thing about my boys, but even they monitor their language fairly carefully since their mother also has a dislike of crude words), but I don't think I've ever had a conversation about it with Rachel. It must have come up at school, but it was just so random to hear first thing in the morning. I love having this awesome little girl in my life!

"soaking"

It's been an awesome summer. Rachel has been very interactive and happy, so we've just enjoyed her. She's eating and talking and playing in ways she hasn't for years, so I'm very grateful.

I love it when she learns new words. It's really difficult to teach new words to her because that requires that she is mentally on the same page as the person teaching her, and it's hard to get her there. Nouns are easiest because I can show her a picture, or the actual item. I can tell her what it is, and eventually she'll get it. Adverbs and adjectives are a bit harder. Frequently she picks up new words on her own. Sometimes she gets it right, and sometimes not so much.

The other day it was raining fairly hard and we were out in it. When we got back I said something about being "soaking wet." She really liked that, and used "soaking wet" a lot over the next little while. Then, when she had that down, she decided to expand her use of "soaking." When we were wiping off the table after dinner she said the table was "soaking dirty." Then, she was "soaking tired." Later, she was "soaking hungry." We have now added "soaking cold," "soaking hot," "soaking sure," "soaking small," and her brother is "soaking tall." There have been more, and I'm a little frustrated I can't remember them right now.  I haven't been able to get her to understand that "soaking" doesn't mean "very," and, to be perfectly honest, it's so cute I hesitate to have her change.

Well, it's "soaking late" and we're all "soaking tired" and her dad and brothers are going to hike to the top of a mountain tomorrow so I'm "soaking sure" that we'd best go to bed.

Milestones

The end of this school year has brought about a lot of changes and has kept us busier than usual, but there are milestones that should be documented. Rachel turned 20. Not only is she not my tiny girl anymore, she isn't even a teenager. I have never had a problem with my own birthdays. I keep wondering if on some future birthday I will get up, look in the mirror, see that I'm older, and become depressed. So far I've avoided that. However, I definitely had issues with Rachel's birthday this year. I don't seem to be able to wrap my head around the fact that she's 20 years old. It didn't bother me particularly when her older brothers turned 20, but maybe that's because they weren't living at home anymore. For some reason, when I look at her, 20 just seems so old.

When I really think about it, I think part of my problem is that as she gets older the chasm between her abilities and the abilities of other people her age widens. We knew when we adopted her that this would be the case (in fact, she is able to do so much more than we thought she would be able to). I don't think I've harbored any secret dreams that she would "get better" and live a "normal" life. Also, more and more often I am having to take her places she doesn't want to go or get someone to sit with her, because there is no one here to watch her and I can't leave her alone. I knew that this would happen as well, and I think I'm mentally prepared for it.

Another milestone is that this was her last year at her high school. This last year she spent part of her time at the high school and part of the time at a transition school that specializes in helping disabled children move into adulthood. They teach them life skills, job skills that may help them find employment, and offer recreational activities. Next fall she will go there full time. Last year Rachel could have gone through the graduation ceremony, but she wouldn't have enjoyed it, so we opted to not have her attend. This year has been a bit better, and her younger brother was graduating, so we decided to at least get a cap and gown and do pictures. I took her to the practice to see what she would do. She smiled all the way through it, so I decided to let her walk. She was right in front of her brother, and I think it went well. She was a little confused, but there were people there to help her and guide her. The only real problem she had was while walking up the stairs to the exit after the actual ceremony, her shoe came off, and her brother had to pull her off to the side and help her put it back on. She apparently was vocal about the fact that she didn't like the situation. I'm not sure what she said, but her brother was grateful to turn her over to me when I connected with them. There aren't many brothers who would be willing to help her out the way he does on a daily basis. I know he has learned a lot from her and loves her completely, but he has had to make a lot of sacrifices and put up with a fair number of embarrassing and uncomfortable situations. He does it with love and quiet loyalty, and I will be forever grateful for him. Lately he's been the one who stayed home with her the most, and while I will miss the convenience of him being here with her when he leaves home, I will miss, even more, his willingness to do whatever random thing I need him to do for me, his quirky sense of humor, and most of all the quiet strength and desire to serve others that he has developed. Rachel sometimes picks on him (verbally, since he is about a foot and a half taller than she is), but I know she is going to really miss him.

This started out to be a happy, upbeat, "look what awesome things are happening at our house" post. I guess it got derailed by the slightly sad/nostalgic thought that my children are growing up. I wouldn't ever want to hinder their progress, but I miss being the most important thing in their lives, the sticky hugs and kisses, and the sleepy "I love you, Mommy" when I tuck them in bed. I look at them and I can still see the children that they were underneath the amazingly awe inspiring people they have become, and realize I wouldn't change a thing.

Dark White

Rachel has been talking a lot just lately, which has been really fun. She just randomly talks, whether anyone is in the room with her or not. Most of her conversations have centered around colors. She assigns colors to people quite frequently. Today her older brother is purple and her sister is pink. Grandpa is dark green. Today she is dark white. I'm trying to figure out what color that actually is. I don't know if that's black or grey or beige or just white that is dirty. I asked her to show me "dark white" and she smiled and said "No, it's mine." So I'm left wondering.

We were headed out the door to go to the store and she said "It's my friend's brother's uncle's cousin." I was impressed that she was able to string the words together that well, even though I'm quite certain she doesn't understand relationships well enough to do it accurately. She frequently mislabels people. Sometimes she does it accidentally because she's not sure what the word means, and sometimes it's on purpose to tease or because she's angry. She knows that some titles go with some people, but I don't think she understands why they get that title. Sometimes she understands more than she lets on, though, or at least more than she can verbally express, so who knows?

She's staring out the window with a little mischievous smile on her face. I asked her what she was doing and she said she wants cake. A dark white cake. With sprinkles.

Sometimes I wish I could see inside her head so I could understand what she is talking about.