Saturday, November 27, 2010

Back and Forth

Janey's regression has backed off a little, but she's not back to what I would call "The Golden Month", September. She's been doing a lot more crying still, and just being unhappy. She seems to now have about one second's reserve of patience---she'll say "I want juice!" and then a second later---I WANT JUICE! I WANT JUICE!---and then the full-blown tears and tantrum. It can be tiring. But she's also doing some great talking and responding. On Thanksgiving she gave me a huge Thanksgiving treat. We were at a buffet meal and she said she wanted milk. None of the milk they had there seemed right, and she was starting to melt down when Tony remembered she'd had those little cups of cream for coffee there in the past. So I got her some, and she said, right away, unprompted "Thanks, Mama!" I cried. It was huge. Then I realized I might have mishead Mama and she might have actually said "Thanks, Arnold" which they say in a video, as the rest of the day she said that a lot, but who cares? The thanks was there. She is doing more of that answering. Sometimes when you ask her how she is, she says "Good!" This can be even if she's in the middle of crying. Or when I say something like "Let's get ready for school, okay?" she'll say "Okay!"

One of the things I've been realizing is how bored I think she gets. At school, she has pretty much one on one attention all the time, and if not, tons of kids around who are interested in her. At home, we do all we can to give her a ton of attention, but we have 2 other kids, housework, etc. There is very, very little that interests her on her own. I've tried every kind of toy I can think of, and none hold her interest. She likes videos sometimes, for a while, mostly Kipper, but that is not the way to spend all day. We try hard to include her in all we do, like having her "help" us wash dishes or do laundry, but that only goes so far. I think most 6 year olds can interest themselves in something for a little while---coloring, looking at books, playing dolls, etc, and most 6 year olds have friends they play with. Janey however needs us every minute. Add to that the fact she doesn't enjoy a lot of what we try to do with her (I'd sit all day reading books to her, or playing make-believe, but it just isn't for her), it makes it very hard to keep her happy all day. I'm so grateful for school.

We've had some very nice moments lately, though. One of Janey's favorite things in the world is Christmas music. She adores it. She welcomes all the old carols and songs back like old friends. I hold off until early November, but since then, it's all Christmas all the time. It's wonderful to hear her sing back a full carol, completely in tune and on beat, sometimes one she's only heard once this season. She did that with O Come All Ye Faithful. I've been making CDs of some of her favorite songs, all the same song on each CD but different versions. I do that so she doesn't get stuck on one song, but feels comfortable with the changes. She has strong tastes, which I am happy are usually like mine---she doesn't want things overly jazzed up. At the end of a song she particularlly likes, she will clap and scream in delight. I love that. I love it when I can share something with her on an equal level---it's amazing.

So it's a 50-50 thing. I think we are enjoying her more. She's developing more of a real personality, and finding her place in our family. However, we are also coming to terms with the fact it's never going to be easy. There is always going to be a struggle to keep her happy, she is not going to all of a sudden learn what a 6 year old usually knows, she is not going to suddenly get "unlocked" and be "normal". Not that I really thought that, but God knows I dream of it.

Saturday, November 6, 2010

Some regression

Lately Janey has been regressing some. It's not severe, and I think it's less noticable at school than at home---she's only had a few tough days at school, but at home, it's been tough quite a bit. I think it started about 3 weeks ago. We had a weekend with a lot of worries about her brother's health (still ongoing) and she got less attention than usual. William babysat her a few hours, and she was fussy, and it seemed to set something off. That started a week with tons of crying at home, and not nearly as much talking. She had had such a great few months---happy, smiling, talking, just being a joy. Lately she is just unhappy more of the time, and I notice a real difference in engagement. She wants to be with me all the time, which is nice, but it's a lot of things like banging heads with me or poking her fingers in my mouth or other semi-aggressive things. She's doing tons of asking for food constantly, but not really wanting what she asks for---a pattern I see during her tougher times, as if one of the only things she can remember how to say is "I want...(food type)" She does it with videos too, as if she is looking for something that will comfort her. I've been trying hard to get her to play toys with me, or listen to books, or sing, and nothing keeps her interest for long.

All this, if someone with a "normal" kid talked to me about it, I would say was just a stage, or that every kid comes and goes with their behavior. But it's not like that with Janey. Every regression reminds me of THE regression, when she went from slightly quirky to completely autistic over the course of a few months when she was turning 3. It's been up and down since then, but then there was the "dark time" last spring---the few weeks of almost total screaming and crying all day and night, that led us to medication. And the medication seemed to help a good deal...until now. We have been doing what the psychiatrist wanted us to do, and trying to wean her off the Risperidal, but that has been gradual and doesn't really explain the regression. Tony often thinks her behavior is seasonal, with fall and spring being the toughest, as it used to be with William, and that might be the case. It's just impossible to say. A month ago I was feeling very hopeful. I allowed myself to think about things like her reading, her making good enough friends to be invited to people's houses, us living a life somewhere close to normal. After days like today with on and off tears all day, interest on nothing for more than a minute, eyes looking unfocused and vague---I don't think that way. I feel like I can never let my guard down for a second.