The Daughter Chronicles

Sunday, May 27, 2007

Mia's last day of school

This past Thursday (the 24th) was Mia's last day in pre-school. She has really progressed in school and in general over the past two years, and we think that she'll do even better in kindergarten. They had a fun day of play on Thursday, and Norah joined in. The teachers had set up a few water tables and a kiddie pool in the playground, and Norah and Mia sat in the pool for a while and splashed in the water. Norah didn't want to leave once she got inside, because the pre-school room is chock full of toys, but I had some things to do so I had to take her. It's never good to take Norah away from toys!

We know that Arizona's schools aren't all that good, but we've had nothing but good experiences with her pre-school. Her teachers and aides are wonderful and her therapists are excellent. She has been working hard and I think she has enjoyed it immensely. She'll have to learn how to deal with other girls in class, because for two years she has been the queen of the pre-school, with all the boys worshipping her. I'm sure she'll do fine.

She's going to summer school, but the time there is kind of negligible. I have to kill two months with her, which is difficult given her situation and the horrible weather here. She loves going in the pool, and has been in a few times this year (the water is chilly but not freezing), so that will be fun to do. I can't wait until she gets to kindergarten, because I think she will do well, but I'm sure we'll have a groovy summer.

Tuesday, May 22, 2007

Mia's IEP meeting

Last Wednesday (the 16th of May), we went to Mia's IEP meeting. An IEP meeting, for those of you fortunate enough to not have children who need one, is an Individualized Education Program, and it's for kids with special needs. Every year we need to meet with her educators and therapists to determine her goals for the year ahead and if she's met her goals for the year just completed. We can also meet any time during the school year if we have concerns about her goals and whether she's meeting them or not.

It was a pretty productive meeting, and we got to hear from the various people who have been working with her over the past year. We hashed out some goals for her, and we brought the document home to run it by her home therapists. Her speech therapist has already suggested a few changes. We chose a school for her, too, which was probably the most important thing.

The last time I talked about this, I mentioned that we were going to visit some schools to see what kind of classrooms they have. I went alone to a school with two programs, and Krys and I went to a different school with two different programs. We decided to send her to the first school and the first program I looked at. It's the program they call "orthotically impaired," and it appears to be as close to a regular kindergarten program as she can get right now. The class is very small with plenty of aides, and they emphasize the academic aspects of school. They also have plenty of devices in the classroom to assist the kids. Mia would spend a lot of (non-)academic time in the regular classroom, also with an aide, so she would spend time with kids her own age, but she would also get the attention she needs. The facility at the school was very nice, and it seemed like a good atmosphere. At the same site was the class for the multiply disabled, which was also an option for her. I wasn't as keen on this class, because it focused more on basic functional stuff, and the kids seemed worse off than Mia, to the point where I wasn't sure how much external stimulation she would get. Mia is largely not self-motivated, so we don't want her in a class where she's not going to see kids who are further ahead than she is. She needs to be pushed, and I didn't think she would get that in the MD class. We're also hoping to do more of the functional stuff at home, while at school we want her to be doing more academic stuff. That's not to say that they don't do academic stuff in the MD class or no functional stuff in the OI class, but the focus in the latter is more on academics, and that's what we'd like Mia to do. The nice thing about it is that she can shift relatively easily between the two, so if it turns out that the OI class isn't working, she doesn't need to stay there. But we think she'll be fine.

The other classes we looked at were for mildly disabled and moderately disabled. We didn't choose those because the kids in those classes were ambulatory, so that takes away a lot of the assistance that Mia would get. That's not to say she wouldn't get it, and if her only problem were a physical disability, that's probably where we would go, but the kids seemed to be further ahead and they definitely went more quickly, so we feared that Mia would be left behind quickly. We don't know how well she's going to do in class, but we want to make sure she's learning and not just sitting there. In those classes, we had a feeling she would fall behind too quickly.

We hashed this all out at the IEP meeting, as well as going over her goals. The biggest problem is that the OI class is at a school that is probably 45 minutes away by bus (it took me about 20 minutes to drive there). The school day is 8.30-2.30, so she'll probably be gone from 7.30 to 3.30. I will probably drive her at least once if not twice a week, because I like to talk to her teachers, but I might end up driving her every day. Coming home, she'll have to take the bus, because Norah is sleeping at that time, but I think she'll like the bus a lot. I just don't want her to spend so much time on the bus. But perhaps she'll love it so much she'll want to ride.

I wasn't exactly apprehensive going into the meeting, but in the support group I've been going to, the fathers have been telling horror stories about IEP meetings. We had no problem whatsoever with the district people. We understand that they aren't completely concerned with Mia and we are (they, of course, want to help Mia, but that's not their only focus, and it is for us), but they were very helpful with all our questions and were willing to work with us. They were a bit obsessed with the fact that Mia once had trouble swallowing, even though we told them over and over that she never really had trouble, just some aspirating, and that hasn't been seen for three years or more. We get that they're worried about her eating lunch without parents around and the possibility of her choking and us suing them, but she has no trouble eating or drinking anything - she doesn't eat much, but that's more her being a pain in the ass than anything. So that was kind of an annoying side note to the meeting, because we were trying to tell them that she has no problem with food and they kept coming back to it. Oh well. The guys at my support group were talking about the school districts butting heads with them over the direction of their kids' education, but so far, we haven't had any problems. We know what Mia is capable of, and the fact that they claim it's easy to switch between the two programs (we have no evidence that it's true, but they do claim it) means that we can keep evaluating her and seeing how she's doing. We didn't have any problems, which was nice.

She starts school on 13 August. The nice thing about Mia is that she doesn't turn 5 until 30 August, so if she needs to, she can repeat kindergarten and not be too far behind. We are very confident that she will do well in school, and we're hoping she can keep up and not get frustrated. We know that's a big issue, because when kids who don't have any problems get frustrated, they give up. Mia does have problems, so we're hoping we can keep helping her and that she won't get frustrated. She can learn very well, she's just very slow at it. So we'll see how her school career progresses. It should be fun!

Monday, May 14, 2007

Mia and Norah's Excellent Adventure!

I said I would post about our weekend (5-6 May) last week, but then our cat died, and I just wasn't in the mood. But that doesn't change the fact that they had some fun that weekend, and we have the pictures to prove it!

On Saturday we went to see Elmo. Yes, Krys noticed that there was a Sesame Street production in town called something like "Elmo's World of Music" and she thought the kids would enjoy it. It's one of those things that parents dread (well, normal parents - I'm sure there are some who get into it) but must endure because it makes their kids happy. It wasn't as awful as I thought it would be, and seeing them enjoy it made it much better to sit through.

The show started at 10.30 in the morning. We had seats along the top edge of the bottom section of the Dodge Theater, which gave us plenty of room for Mia's wheelchair. Once the show started, they were both very good, except for a brief moment when Norah decided that sitting still in the same place was for suckers and she went walkabout. I'm not quite sure what she wanted to accomplish, but she wandered along the walkway between the bottom and top sections of the seats until I grabbed her and strolled around the lobby and back to our seats. This was about fifteen minutes into the show, so it wasn't like she was restless yet. She sat for the rest of the show, and had a grand time bouncing up and down on Krys's lap. We asked Mia a few times if she was having fun, and she said rapturously, "Yes!" So a good time was had by all ... well, except for Dad, but who cares about him, right?

We managed to get a few pictures:

On Sunday, as I wrote last time, Norah got a haircut. Afterward Krys took her to the play area at the Chandler mall for some quality running-around time. I took her there once and she did not have fun, but this time, Krys said, she had a time. She slowly walked around the play area, not quite sure if she was allowed to just wander, and kept her mouth shut. Krys said she watched the other kids screeching and then realized that nothing was stopping her from making similar noises, so she let loose! Krys got some pictures:

I took her there last week, and she had a grand time. Of course, now that she loves it, it will be difficult to drag her away from it. I've noticed that every place Norah is right at that moment is the greatest place EVER, so of course she doesn't want to leave. But at least she enjoys it. With the temperature skyrocketing (this week it should be consistently in the 100s), it's nice to have a place where she can run around without being exposed to the heat and, you know, dying.

Mia's IEP meeting is on Wednesday. Come back later this week to find out all about her kindergarten plans!

Tuesday, May 08, 2007

Norah's first haircut!

Norah got a haircut on Sunday. This was quite the eventful weekend, as I'll show in my next post, but for now, it's all about Norah and her haircut. I was stunned by her haircut, but not in the way you might think. Krys took her to the salon she goes to, and I thought she'd get, you know, a haircut. It turns out that Krys wanted the stylist to "shape" her hair into "layers" (I'm a guy, so hair talk means nothing to me), but as Norah's hair is very thin, the stylist really couldn't do much with it. So she got a slight trim, and Krys is going to take her back in a while (she didn't make another appointment) after her hair gets a bit thicker. I thought she was getting it cut short, because Krys has been whining about how it's all wacky and Norah very quickly takes out any hair tie we put in it, so a ponytail is tough. It did, however, give us an opportunity to take pictures of her (like we need an excuse!), so here they are!

Here's one of the before pictures. Note the out-of-control 'do!

A little further back for this shot, as it allows her to preen. She digs the camera!

Here's her length. As I wrote, it turned out not to make much difference, but I did want to get a "before" picture.

Voila! Post-haircut! Notice the huge difference! Krys said she was very good in the chair, which is not too big a surprise. She, like Mia, is often good for the "public," reserving her tantrums for Mommy and Daddy, who are bound by the law and society to put up with them. Stupid law and society!

Another post-cut photo.

Compare the lengths of the "before" and "after" pictures! As I am a dim-witted man, I see no difference. Krys assures me that it's shorter, though!

I love this picture. Part of the problem with photographing Norah is she comes right at the camera so she can poke it, and it's hard to get her to stand still! But when she does stand still, she's very photogenic.

More pictures next time. We had quite the adventure over the weekend!

Thursday, May 03, 2007

To sleep, perchance to dream

We've had issues with Mia's sleeping in the past, to the point where we have been giving her Melatonin for a few years in the afternoon to help her take a nap. Without it, she wouldn't sleep, and she would be very tired early in the evening. My mom occasionally told me she might be too old to nap, but I rejected that advice for two reasons: she was very tired early in the evening, and I needed a break. This was especially relevant as we were transitioning Norah from two naps to one, which, weirdly enough, made her one (afternoon) nap harder to get through, as she often woke up, I think, for spite. Now Norah is fine, but something strange has happened to Mia.

A week ago, on Wednesday (the 25th), she woke up crying. She has done this occasionally in the past, and we thought at first that her seizures had come back, but it wasn't very regular and the last EEG she got showed no seizure activity. Then we thought it might be a nightmare. Too bad, but nothing we could really do about it. So I got her up and hung out with her. It happened again on Thursday. Strange. Then Friday. Weird. Krys suggested she had a headache, so before her nap on Friday I gave her some Motrin. It didn't work. Interestingly enough, whenever I calmed her down, I would suggest going back to bed, and she would start crying again. This happened whether I calmed her down in bed or out on the sofa. So she was upset about actually going into the bed. She didn't say anything when I originally put her down, but later, it upset her.

We tried again on Saturday, because I thought maybe Krys's presence would calm her down and let her sleep. Nope. She was crying soon after we put her down. That night was awful. She had been sleeping fine at night, just not in the afternoon, but on Saturday night, she and Norah couldn't sleep. We're pretty sure Norah had an upset stomach, but we couldn't figure out what was going on with Mia. She did eventually stop crying, but when we went to bed at 11 she was still awake, chatting to herself quietly. Eventually she fell asleep, but we hoped this wasn't going to be a pattern.

On Sunday we tried something new. We put her in her bed and gave her a toy. We lowered the blinds, but not all the way. We put her noise machine on and left her. She played for a few hours, perfectly happy. She didn't fall asleep, but she didn't cry either. I've been doing that all week, and it seems to suit her. I still think she needs a nap, because she's still exhausted in the evening, but considering she needs to start staying awake all day in August when she goes to kindergarten, I guess it's not a bad thing to start adjusting. I feel bad because I can't really do much with her. I can't take her out because Norah's asleep, and if she walks around in her gait trainer she makes a lot of noise banging into walls. In a few weeks I'll be able to take her in the pool, but until then, it's tough.

The strange thing is we think we've figured out her problem. Krys put her to bed one night and she said, "Fan off." Krys turned her ceiling fan off and she was happy. She asked Mia if she wanted to air conditioning vent closed, and Mia was very enthusiastic in her affirmative. The AC kicks on with a bit of a ruckus, and we wonder if it makes enough of a noise and if the vent is pointing right at Mia, which disturbs her. So now the vent is closed and the fan is off. Krys went in her room last night and came out talking about how hot it is in there. We're going to open the vent just a little bit, but it's possible that Mia just enjoys the heat. We don't know how her temperature regulation has been screwed up (or if at all), but it is possible she gets too cold.

So she's kind of off her nap. It didn't exactly happen the way we thought it would, and I suppose we could try to get her to sleep occasionally, just to see if she wants to, but I don't mind it too much. I just hope she can adjust so that she's not so tired in the evening. She doesn't get unpleasant (like her sister), but she does become a bit of a zombie. And that's no fun.