Hug!!

This morning when I got Rachel up she started to climb out of bed and very sleepily said "going?" and stumbled into the bathroom. Can I just say how much I dislike daylight savings time? She was doing so much better getting up in the morning when it was actually light outside, and now we're back to dressing in the dark. It does not make me happy. She was doing much better by the time she left, and she actually waved to me again.

Yesterday she was not in a particularly good mood. She was talking to her brother and told him, for no apparent reason, "I don't like yellow!" He was trying to cheer her up and interact with her, so he said "Oh, well, what do you like?" She responded with "poop" and walked off into her room. I am again overcome with gratitude that she hasn't learned any swear words. That was definitely bad enough. Although her brother thought it was pretty hilarious (and yes, we all laughed. If you don't laugh you end up crying at some point).

Today when she came in the house after school she was really unhappy, and burst into tears on her way into her room. I went in to see what was wrong and if I could help her, and she gave me a hug. This was an honest to goodness bonafide hug. Those are VERY rare. Usually she gives what we call a "lean" which is a hug without arms. If you put her arms where they're supposed to go, she'll leave them there for a bit, and sometimes if you remind her to use her arms she will, but not usually. Today I got the real deal, and she slowly quit crying and calmed down. She said her knee hurt, so I took a look at it, but I couldn't see anything wrong. An hour or so later I needed to go to a friend's house just a few blocks away and decided a walk would be nice, but I noticed she was limping. Her right knee is really stiff. We walked very slowly, and by the time we got there it wasn't as pronounced. After sitting for an hour or so we walked back home, and her knee was even more stiff than on the way there. I still can't see anything wrong with it, but obviously something is bothering her. It doesn't seem to hurt when I touch it or move it, but it bothers her when she's walking. I don't know if I should put cold or heat on it or take her to the doctor. Sometimes the communication issues are so difficult to deal with. I wish she could just tell me what happened.

Grateful

This morning Rachel had a hard time staying focused on getting ready for school. She would have been very content to go back to bed or just sit down and look at books. I had to keep reminding her that she needed to get dressed. She wasn't unhappy, she just didn't really want to be up and moving around. I don't think anyone did. It was a rather quiet morning.

While we were visiting Grandma and Grandpa we watched a movie about Temple Grandin, who is a very successful woman who is also autistic. When Temple was four, her mother apparently was told that the reason her daughter was autistic was because at a vital point when Temple needed her, she wasn't there for her. Because of this they hadn't bonded properly, and that is what caused the autism. I can't imagine being told that. I remember attending a meeting with other parents of autistic children when Rachel was still a baby, and they all spoke of feeling guilty. They felt that they had in some way contributed to their child's disability, and that guilt haunted them. I can't imagine having someone add to that natural guilt response with an actual accusation. I am appalled that someone who is educated could actually have come up with that scenario as an answer to a disability. Since we adopted Rachel, I was free of guilt for many years. Since she had continued to make steady progress under our care, I felt sure that I had only enhanced her life. Until recently. The past 5 or 6 years, as her progress has come and gone, I have learned how to wonder if what I am doing contributes to her progress or her lack thereof. And now I do feel guilty a lot of the time. How grateful I am that I don't have a professional telling me that it's my fault.

Temple spoke of needing a hug, but being unable to accept a hug. She developed a "machine" that allows her to feel the comfort of being hugged. I am so grateful that Rachel allows us to hug her. She didn't when we first brought her home, but her older brother was fairly insistent that he get to hug her. Over time she began to accept the contact, and now she is calmed by hugs (most of the time). We are so fortunate, and so blessed, to be living at a time when disabilities are so much better understood, and to live in an area where so many people are not just willing, but anxious, to reach out to us.

As Rachel left today for school, I gave her a quick hug and kiss, and she gave me a smile and a wave goodbye. Life is good.

Home

Last Wednesday, Rachel, Daddy, and I went to visit Grandma and Grandpa (Daddy's parents). It's about a four hour drive, but she didn't say much of anything during the trip. She sits directly behind me, so it's hard for me to see her. Daddy tried to interact with her, but she was mostly content to stare out the window. We had a great time visiting. We went for drives and walks, shopped a bit, ate great food, watched a few movies, and mostly relaxed. She seemed fairly calm and happy most of the time. She only got upset one time, and it was fairly minor. I love that her Grandparents understand her and love her for the amazing person that she is. They are just fine with whatever affection she is able to give and whatever interaction she is up for, so it's just fun for all of us to be there. She doesn't really give hugs, but she does allow herself to be hugged most of the time, and she likes to be snuggled most of the time. She didn't really talk very much, but she seemed at peace and relatively happy. She didn't have any problem with her appetite while we were gone, which was really good. She slept in the same room as Daddy and I, and she's a super light sleeper. I tried to make sure she was asleep before we went to bed, but every night she would be awake when we went to bed. I was grateful that she slept in. She usually doesn't sleep in very well, but I guess she was tired enough and comfortable enough that she slept through quite a lot in the morning, usually at least until 9:00 or even later. I was glad because it's hard to have fun when you're tired, and the whole point of visiting Grandma and Grandpa is to have fun.

We came home on Sunday, and it was the day that we have cousins for dinner, so that was fun. Fortunately her sister-in law and her brothers fixed dinner, because we got home just as the cousins came (we had a flat tire on the way home, which set us back a bit). It's awesome to have amazing children!!! Rachel was okay with being in the middle of the hubbub, which was good. She seemed to enjoy the conversation around her, and she ate really well.

When I put her to bed last night I tucked her in and gave her a kiss and asked her if she was happy. She gave the tiniest little smile and said "my bed." Vacations are awesome. I totally love to visit family, especially. But I agree with Rachel, it's also nice to come home.

At least it's talking?

Two dialogues, approximately 15 minutes apart:

Dialogue Number One during which she never even looked at me:
Me: Hey, sweetie, how are you doing?
Rachel: (angrily) It's my birthday!
Me: Okay, now you need to put on your shirt, okay?
Rachel: It's not your birthday!
Me: You're right. It's not my birthday. Please put your shirt on.
Rachel: (tearfully) Is too, it's pink! (the shirt is green, but she's not looking at it, so I don't know what she's referring to for sure)
Me: Do you need some help?
Rachel: You're talking like a grandma! It's a spider!
Me: Okay. I'll be back in just a minute. Please get dressed.
Rachel: Don 't bite me!
Me: (after leaving for a minute and coming back) Thank you for putting your shirt on. Now shoes and socks, please.
Rachel: I'm not going.
Me: Sit down so you can put them on.
Rachel: (yelling) It's a birthday cake! It's not your birthday! It's my birthday!
Me: Pull your sock all the way up so it won't hurt your toes.
Rachel: (nearly crying) Is too, it's stupid! It's not pink! You bit me! I'm not a girl! I'm a boy! Rachel's a boy! I'm not going! It's a spider!
Me: Let's hurry and get these on. There, all done!
Rachel: No! It's not your birthday!


Dialogue Number Two, which she initiated (even coming into a different room to find me) and made complete eye contact:
Rachel: (sounding sad, but not angry) My lip hurts.
Me: Here, let me see.
Rachel: (pushing her bottom lip out) It hurts.
Me: Hmmm, I don't see anything wrong. Would you like something on it?
Rachel: Yes.
Me: There. Does that help? Do you want more?
Rachel: (smiling) Yes. (after a little pause) Thank you.
Me: You're welcome. Tell me if it keeps hurting, okay?
Rachel: (leaves to go look at a book).

We definitely have our ups and downs. They used to follow a trend of some sort, getting progressively better or worse over a period of time. Now it seems totally haphazard and I have absolutely no idea what to expect out of her at any given moment. After all that talking, she sat and looked out the window with a book on her lap, and didn't say anything for nearly an hour. She totally ignored everything I said or did. It's a little confusing, to say the least.

tantrums and smiles

This morning, before I even had a chance to say anything, Rachel said "No. I'm not going." She kept repeating herself, and kept sitting down on her bed whenever I wasn't looking, so I think maybe she was genuinely sleepy. She didn't stay up too late, but I have no way of knowing if she sleeps at night or not. She ate breakfast without complaint and seemed to be okay on her way out to the bus.

Yesterday when she came home from school she was in a horrible mood. She walked in the door and, with a very accusatory look, yelled "Is too, you bit me!" She continued to argue (with herself, since I refused to participate) that I, or someone, had bitten her, while she used the restroom, and then instead of coming back into the kitchen or living room she went in her room and slammed her door. I don't remember the last time she even shut her door, so it made quite a statement. I could hear her in there still yelling, then talking, then mumbling. Little angry comments. After about 45 minutes she quieted down and I opened her door. She was sitting on her bed with a magazine on her lap. She didn't respond when I spoke to her, but she looked pleasant enough. About a half hour later she was willing to show me her pictures. I have no idea what set her off, but I'm glad it passed. When she was younger and more prone to temper tantrums I would occasionally put her in her room to help her cool off. It wasn't a punishment, and it wasn't that I didn't want her near me when she was out of control, but if there were people around to "perform" for she would keep up the behavior longer. Also, it you're already in a bad mood almost anything anyone does is annoying, so she would continue to find things to be mad about. If she was alone, she would calm down much faster and was much less inclined to break things or try to hurt herself or someone else. I think it's interesting that she went in her room and shut her door when she was out of control. I'm hoping that maybe (?) she is learning how to take responsibility for her emotions a little bit? I truly hope so. Not that she's had that many emotions to take control of lately. I don't like seeing her out of control, but in many respects it beats the "nothing" that has been there recently.

Her brothers had another basketball game last night. It actually ended up being two one-hour games with one hour to rest in between. She laughed through the whole thing, which would probably have been  more appropriate if they had won. They played well, however, and I don't think either of them have any permanent damage to their bodies (which is a constant worry for me. Whatever they do, they do it intensely, without apparent concern for what could happen to them.) It was a good evening, and when I tucked Rachel in bed she looked very relaxed. I asked her if she was happy and she smiled, just a tiny little smile, and nodded her head. That's all I needed.

looking up!

I've been a bit lax in writing lately, because there hasn't been much to write. It seems like every day is a rerun of the previous day. Rachel only turns the lights on in her bedroom when I remind her to. She doesn't really play with anything, or even look at anything. She eats what I put in front of her if I prompt her, but needs to be reminded frequently. She dresses herself, but again she has to be reminded what she's doing. She is just as likely to take off the shirt she just put on as she is to put her shoes and socks on unless I physically remind her what the next step is (she hasn't been listening to verbal prompts very well). Frequently she washes her hands and then just touches the towel, instead of actually drying her hands. I noticed over the course of a few days that she went from turning the light off, to just touching the light switch, to motioning in the general direction of the light switch. I'm not sure how to stop this trend, because I don't know what is causing it. On the up side, however, this time I know she can/will come back. The first time she did this I thought it was permanent, and it lasted nearly a year. Since then she's had a lot of ups and downs, but I can weather them a lot better when I know it's not forever.

Yesterday when she came home from school she immediately went to her room. I went in a few minutes later, expecting to find her staring at nothing, but she had gotten a few magazines out to look at. I talked to her for a few minutes about pictures she was interested in. She had a picture of a mom and dad and a little girl. She pointed to the little girl and said "That's a girl. That's Rachel." Every time I checked on her she had more magazines and papers out, and she was usually willing to talk about them. When it was time to eat, she came right away and ate well. When I asked her if she wanted more she said "yes" and ate that quickly also. I tried to get her to talk to me, but she was in a hurry to get back to her bedroom and her magazines. Her brothers had a basketball game last night, and so we went to cheer them on, which was really fun. I'm not sure she really enjoyed it, but it was good for her to get out and see some people. When we got home it was a little late and she still needed to be bathed, and then there was this huge pile of magazines and papers spread all over her bed that had to be put away (which was awesome, not annoying), so she got to bed a little late. I am so glad that she is doing things again. I hope it will continue. I've missed her.

Cake

Rachel usually sits right up when I go in her room to get her up, but today she just pulled the blankets closer to her face. I said "It's time to get up, babe" and she responded with "No. You do it." She kept saying "not going" all while she was getting dressed. At some point her conversation turned to describing cakes. She does that a lot. She pictures birthday cakes in her head, and sometimes she'll describe them to me. The other day she was talking about someone's birthday cake that was blue with "angles" on it (triangles maybe?). Then she went on to describe a green cake. I asked her what color her cake was, and with a classic teenager "duh, mom" look on her face she said "pink!" Then she smiled a big smile and said "it has circles." This morning it didn't sound so much like a description of lots of different cakes, but just a conglomeration of every description she could come up with all run together in a confusing string of words. She mentioned all her usual favorite colors and shapes, but then stuck "bad guys" right in the middle of the description as if it fit somehow, and then went on to talk about "lights" on the cake (candles, probably). She was in a fairly happy mood by the time she left, and she even waved goodbye when she was on the bus.

Last Saturday when she was getting dressed she was pretty annoyed with her shirt. She was having a hard time getting it on properly and she reached down with her right hand and pulled on the left sleeve and stared at it for a second. Then she said "My shirt's name is...it's name is...my shirt's name is stupid!" I have tried for years to get her to name her stuffed animals or dolls, and she's never really done it before. "The dog's name is dog" or "I don't know" were the best answers I could usually get. Obviously she still doesn't quite get the concept, but it made me happy anyway.

Yesterday after school I was again unable to get her interested in anything. She ate dinner quickly and well, but she was uninterested in playing with or looking at anything. In the evening she went to her room and I watched and waited for a couple of minutes, but there was no sound and her room remained dark. I called to her to turn her light on and after a brief pause she turned it on, but when I checked on her a few minutes later she was just sitting on her bed. I eventually talked her into coming in the living room with me, and we listened to some music while I did some knitting. Everyone else had someplace they needed to be, so we were alone, but then her brother and his wife stopped by for awhile and she perked up a bit, so that was awesome. Apparently we need more people around here.