The Daughter Chronicles

Saturday, April 24, 2010

Norah dispenses wisdom to her dumb daddy!

This week, Norah and Mia got a tea set at the doctor's office (don't ask). It's a nice one, too - it's a Tinker Bell set, and everything is made of china, not plastic. She wanted to play with it when we got home, but I told her to wait until Mommy got home. When Krys showed up, she bugged me again. I really didn't want to get it out because I was afraid she would break a piece or two and wanted Krys to impress upon her that she needed to be careful. I told Krys that I wanted her to show Norah how to play with it. It wasn't exactly what I meant, but I said it anyway. Norah indignantly said, "I know how to play with it. You get your dolls out and you have a tea party!" Well, I guess she told me! And so she did:

They're naked because it's a pool party, so they have to take their clothes off. And yes, Norah got a haircut this week. Last weekend she cut a bit of her hair off (not the first time she's done this, if you recall) and so I took her to get it fixed up, and she said she wanted it short. We think she was jealous that we were making such a big deal of how pretty Mia was with short hair. But of course, Norah and Mia are adorable no matter how long their hair is!

(Krys went to her parent-teacher conference for her pre-school - yeah, I know - this week and they said she was definitely ready for kindergarten. I figured she was, but it's nice that others share this opinion. August can't come soon enough!)

Sunday, April 18, 2010


As long-time readers of the blog know, every 18 April I post about Mia's accident, which occurred on 18 April 2003. Yes, seven years ago today. It's a bit odd to realize it's been that long - days may be long, but years tend to speed by, I guess. I always like to assess Mia's progress throughout the year, so let's go to it!

I have written about the accident before, here, so there's no need to rehash. I try not to dwell on it, because it happened, and we all need to move on. I mentioned to a few people that today is her "anniversary," and they mentioned that it's probably a rough day for me. It's not really, because it's not like I don't think about her predicament every day, so this is just another one. It's a useful date to ruminate about her progress, that's all.

Just like last year, the big news this past year has been her hip and her problems with it. She had the surgery in January 2009, and in April of last year, she still had the metal plates in her hips helping her heal. She got those out in July, but she developed a stress fracture in her groin that needed to heal. She got over that, but by November she was having problems again. Her adductor muscles in her legs - the ones that pull our legs toward the middle, as opposed to the abductors, which pull them outward - have such high tone (a consequence of her accident) that even after the surgeon cut two tendons in her legs, they were still pulling her legs across midline, which was causing a great deal of stress on her hip capsule, so the doctor had to operate once again. In February he went back in, cut another tendon, cleaned up some scar tissue from the fracture, and fixed her hip capsule. She was in a abducting cast for a bit over two weeks, the cast keeping her legs spread farther than is reasonably comfortable. I told people who didn't see her to stand up and spread their legs out as far as they could in a split. Then do it a tiny bit more! Then stay like that for two weeks. Yeah, not too comfortable. The idea was that her abductor muscles would be strengthened by this and when the cast came off, she would be looser than she had been. It worked ... to a degree. A few days after her cast came off (and after she had a few very good days at school, because she felt so much better), the incision in her groin opened up. That wasn't pleasant. Again, imagine a wound right where your leg connects to your pelvis and think about how much that area moves during the day. Even for a kid like Mia, who doesn't walk, there's a lot of movement in that area. So Mia was really uncomfortable and a lot of her looseness in her muscles went away, as she tends to tense up when any little thing hurts her ... but unlike regular folk, it's very hard for her to relax, so she just spirals a bit into more and more pain. Her surgeon finally decided to stitch up the wound (instead of letting it heal naturally, which, given how large the hole was, wasn't going to happen too soon), and that helped a great deal. She's much more relaxed and loose over the past few weeks (she had the wound stitched about a month ago) and she's working harder at therapy. She's been riding her horse again, which keeps her legs apart, and having a grand time doing so. She's been in her stander at school and isn't complaining about it (well, until she's been in it for 45 minutes or so, but that's to be expected). We don't keep her legs as far apart for as often as the surgeon recommends, because it's impractical, but we do make her sit with a big wedge between her legs for a little bit every day, and she sleeps with a large pillow between her legs (when she keeps it there, which isn't often). This past week the surgeon took out half of the stitches, and the rest come out next week. I very much hope that the wound won't re-open, because that would, well, suck. So far the half-stitched wound seems to be staying closed, which is nice, but once the rest come out, that will be the real test. Her surgeon seems remarkably optimistic that it won't pop open given that it's, you know, already done that, but we're going to be careful with that as we move forward. No big wide stretches until we're sure the skin is completely healed, in other words.

That's the big news of the year, mainly because it's taken up so much time. She's basically missed over a year of physical therapy, even though we can still make her do a lot of what she was doing before. She was doing her usual therapy in the pool last summer, and when the weather got better she was able, for the most part, to switch to the horses (not when she had the cast on, obviously, but other than that). It's only in the last few weeks, however, that her therapist says she seems comfortable on the horse, and with Mia, if she's not comfortable, it's very difficult to get any meaningful therapy out of her. Meanwhile, she was just starting to stand again last summer when she got the plates out and then fractured the bone. So that was a setback. Then, when that healed, she began hurting again, which led to the surgery, which was another setback. She's just started standing again, and in the meantime, her PT hasn't been able to work on her walking for well over a year. In late 2008, she was doing very well walking (with help, of course), even though she was pulling her legs across midline too much. After the surgery, she couldn't walk for months, and because of all the problems, she hasn't been able to start again. Her horse therapist made her walk a bit a few weeks ago, and she did fine, so maybe she'll be able to start again. Her home PT is a bit tougher on her, however, so I anticipate the screaming will begin again fairly soon!

The other major event that happened this past year is the switch to a different school. She was in the same school for the first two years of her schooling, and it was pretty perfect for her. The class was small and had almost as many aides as kids, and the teachers and aides were all very experienced with TBI kids. She had made a lot of progress there, and so of course Mesa Public Schools killed the program. They claimed there weren't enough kids for it (which is a horrible, horrible lie) and they couldn't afford to keep it going (which is true, but they based that on the fact that they didn't have enough kids for it, which is, as I may have mentioned, a horrible, horrible lie). So we had to switch schools and put her in a different program. We chose a school that is actually closer to our house, which is really the only improvement. It's not that it's a bad school, it's just that they have two different Special Ed. programs and neither really works perfectly for Mia. We put her in the higher-level one even though we knew she'd be slower than the other kids, because in the other class, she'd be the highest-functioning kid, and we want her to have good role models in school, so the first class was better that way. As I've chronicled throughout the year, it's been a challenge. After her surgery last January, she dropped about six pounds (considering that she was barely over 40 pounds to begin with, that's no good) and still hasn't recovered all of the weight (for a 7-year-old, she's about ten pounds underweight, as she has always had problems eating). When she got to the new school, we told them that getting her to eat was the biggest priority, and they spent months getting her to eat while we tried at home. Finally, she was eating relatively well, and they could concentrate on other things. Meanwhile, her first-year teacher was having some issues figuring Mia out. For those of you who don't read this blog regularly (shame on you!), Mia is like every other 7-year-old, in that she likes to manipulate adults. However, she tends to cry loudly very often, because she's often uncomfortable. It's hard to tell when she's in real pain and when she's crying because she doesn't want to do something. As Mia is very adorable and as she's obviously disabled (she's in a wheelchair, after all, and doesn't talk too much), it's harder for people who don't know her well to call her on her BS. People tend to want to hold her and make her feel better, but when she's crying just to get out of, say, sitting on her own, that's not the way to go. It took me a while to harden my heart, so to speak, to her crying, but I've spent years with her learning her ways, so I know when she's really in pain and when she might be in some discomfort but is also grumpy that we're actually make her, you know, work. Her teacher is finally, after several months, starting to understand this, but it was a tough road. Her PT and I actually went in to her class in November to show them that Mia could actually sit on her own quite well, because whenever they moved her, she would cry and they thought it hurt her too much and that she would fall over. She falls over occasionally, but it's much less common than you might expect. Her teacher finally gets that Mia is, in many ways, a typical 7-year-old, and if she doesn't want to do something, she whines about it. Unfortunately, when she whines, it tends to come out like crying, so people take it much more seriously.

She has adjusted to the new school, and in this calendar year, she's making great progress. I just wrote about her IEP meeting a few days ago, so I won't recap here, but everyone who sees her in class is impressed with her progress. She is slowly learning to read simple words (mostly CVC, but a few longer ones, too) and she is doing some rudimentary addition. Her handwriting has improved a little, but we don't really care about that too much - so much is done on computers these days that if she can sign her name, we'll be happy. Her computer skills are improving, as well. Once the teacher understood that she didn't have to meet all her IEP goals this year, she relaxed and started simply getting Mia to learn as much as she could. That seems to have helped a great deal.

We continue to see improvement in Mia, but it's, of course, very slow. She's talking much more, but she still doesn't really have conversations with people - she's very goal-oriented with her speech, as in "I want _____!" and such. She seems to vacillate between not pinching very much and pinching a lot - she's still not really aware that it's not the best way to get someone's attention, but she doesn't pinch everyone, so she knows it's not very nice. She's getting better at knowing who people are and learning their names, so even if she doesn't engage them in conversation, she's very good at saying hi to them and using their names. She and Norah still have a good relationship - Mia occasionally pinches Norah, but Norah has gotten smart enough to stay out of her range for the most part or at least walk away when Mia does so. Norah has been a big help this past year (and for longer, but especially this past year), because she's gotten older and more knowledgeable about what we want her to do (not much, trust me - she's four!). It's interesting to watch Norah, because it seems like she's a bit more mature than most 4-year-olds, and I wonder if it has to do with the fact that we ask her to help out with Mia a bit. Just today I asked her to hold Mia's arm while I changed Mia, because Mia is unhappy with the stitches in her incision, especially as they itch her a lot. She tries to scratch them as I change her, so Norah held her arm - no small task, as Mia's right arm is quite strong - and did so admirably. We ask a lot of Mia, but we also ask a lot of Norah, and I'm proud of both of them for rising to the occasion so often.

2009 and 2010, so far, have been tough years. Before Mia's surgery, she was making progress at school and in walking, but she really needed the surgery because it would have just gotten worse and worse. Her surgeon told me a year ago that hip surgery is usually the hardest surgery from which to recover because the hip is such a crucial fulcrum in the body and there's a great deal of stress on it. So I don't know if Mia's recovery time is slower than usual - I suspect it is, but I don't know - and that's why this past 15 months have been so hard. She seems finally to be coming out of it, and that's why I want to keep it slow so she doesn't have yet another setback. We always take the long view with Mia, because everything she does takes so long for her to get, but it's still frustrating losing over a year of therapy. But we're still hopeful about her. I despair occasionally, of course, because I honestly don't know if she'll ever walk (I don't care as much about that, but it would be nice) or if she'll ever be able to read or interact with the people around her (which is our more important goal). It's frustrating not knowing, but we do what we can.

I've written before that I'm sad almost all the time, but I never let it cripple me. It's possible to be sad and be happy as well, and when I see Mia work hard or hear how well she's doing in school, it's a mixture of sadness and happiness, because I wish she weren't in the situation but I'm glad she's working hard. The accident is a huge turning point in the lives of all four of us (even Norah, who wasn't born yet), and as we move along through life, it becomes clear it hasn't had completely negative consequences. Of course, it would have been better had it never happened, but I can't pretend that some good didn't come from it, even if that good has very little effect on Mia, which is really all that should matter. I can't speak for Krys, but I think it's made me a better person, and it's definitely made me more aware of the problems of kids with special needs and what needs to be done for them. I can't say it's worth it, because I do wish I had no idea about kids with special needs (I'm still selfish that way), but I try to take some goodness from the accident and its aftermath. The best thing about Mia is that her personality from before the accident didn't change - she was a happy baby and she's grown into a happy kid. She gets frustrated and angry like every kid, but she doesn't understand her limitations and therefore she works hard at things even if it's probable she won't master them. She loves school, she loves people, and she loves getting out and seeing stuff. We want to show her everything even if she doesn't remember much, because she has such a grand time getting out and about. I took her to the San Diego Comic-Con last July for a day, and she had a great time moving around the packed floor of the con and saying hi to various people. I often get very sad looking at her and thinking of all the things she'll never do, but then she smiles and says "Hi, Daddy!" and I can't be sad, because she's alive and happy. Sometimes that's good enough.

Anyway, if you're interested in reading the previous anniversary posts, here are the links: 2005, 2006, 2007, 2008, and 2009. I always appreciate people reading about the kids, so I'd like to thank you for it. Maybe some day I'll have a video of Mia walking on her own! That would be keen.

(Yes, I just posted this yesterday, but this is the most recent picture I have of her. And look how cute she is!)

Saturday, April 17, 2010

Off with her ... hair!

Yes, Mia got a haircut today. We have been letting her hair grow for a few years, but we cannot any longer! When we originally cut her hair very short, it was because she was putting it in her mouth. So we cut it short and kept it short. Then we let it grow long in the hopes that she had grown up enough to keep it out of her mouth. Alas, it was not to be. She gets bored and pulls out her barettes and her pony tail, and then she puts her hair in her mouth. It's very frustrating. So today we got it chopped off. Behold!

Mia with long hair:

Mia with her fancy new hair cut:

So there's her brandy-new hair style. It's awful purty, ya reckon?

Friday, April 16, 2010

IEP time!

On Thursday, 8 April (I'm a tad tardy), Mia had her IEP meeting (that's Individualized Education Program for you lucky people without Special Ed. kids). I mentioned recently that we were a bit worried about it, because her teacher seemed to be pushing for her to be moved to the Moderately Disabled class rather than the Mildly Disabled class she's in right now. You might argue that a kid with a traumatic brain injury is certainly NOT mildly disabled, and you'd be right, but she's probably not right for either class (she should be in the class she was in last year, but budget cuts ended that, so it's not an option), and we'd much rather she be in the class that is a higher level than a lower level. She's been doing well in school recently, so we hoped there wouldn't be too much dissent.

It turns out all was well. The school psychologist and the district TBI specialist wanted to get her classified as "multiply disabled" as well as TBI because TBI is such a broad category that they like to be a bit more focused, and she'd get more funding if she was in two categories (money concerns are, unfortunately, always present when you're dealing with public schools). It turns out she doesn't qualify for the Moderately Disabled class anyway, but even before that, I got the feeling that the teacher wasn't going to push it. I've been talking to the TBI specialist a lot recently, and she told me that the teacher has been working very hard to understand what's going on with Mia and how to deal with her. It doesn't hurt that Mia has been relatively healthy recently (yes, she's been having some surgery, but that's just discomfort - before the surgery, I think she was actually in pain quite often) and she's eating better, so the teacher can focus on her education more. Plus, Mia has gotten to know the teachers and kids better, so she's more into everything. Once that was settled, we simply went over Mia's goals for this year, tweaked them a bit for next year, and all was well!

We've never had a contentious IEP meeting, which is nice. Everyone knows what Mia needs, and it's just a matter of making sure everyone reads the document and agrees with it. The teacher was putting a lot of pressure on herself to make Mia reach her goals this year, and once the TBI specialist told her that wasn't really necessary (as we can, and do, simply tweak the goals a bit), she relaxed. She seems to put a great deal of pressure on herself in general with regard to the kids, so the fact that with Mia specifically (and probably Spec. Ed. kids in general, although I don't know for certain) she didn't need to reach every single goal made her happy. We'd love it if Mia reached her goals, and we were able to take a few off the IEP and add some new one (but not many), but what really matters is that she makes progress. If that means doing something 5 out of 10 times this year and 6 out of 10 times next year, so be it. You take the long view with brain injuries.

The next day I took Mia in after her horse therapy and spoke briefly to the teacher. I told her how much we appreciated all the hard work she's been doing with Mia. She really has worked hard to make sure Mia has moved forward, and anyone who goes into the class after not seeing Mia for a while is amazed by her progress. The teacher mentioned how difficult it is to adjust to teaching - she compared it to studying the Grand Canyon and then going to see it, which is an apt comparison, I think - and how she just wasn't sure how to get through to Mia. Mia is, I think, a bit more difficult to deal with than even other special needs kids, because she learns so very slowly and she really doesn't express herself very well - it's very hard to judge when she's angry or when she really gets something, for instance. The teacher also told me that she's still pinching the aides far too often, and I really think it's because they're not tough enough with her - you really have to get right in Mia's face and tell her, sternly if not angrily, that pinching is unacceptable. She'll get in eventually, but if you do it with a nice voice or half-heartedly, she'll just ignore you. The teacher speaks to her very sternly, and Mia doesn't pinch her. The teacher doesn't yell at her, but she's curt and keeps Mia focused on her when she's talking to her. The teacher told me she understands what I go through - Mia screams bloody murder when you make her work, and about 5-10% of it is actual discomfort or pain - the rest is whining. But when she's screeching so loudly, the tendency is to ease up on her and comfort her. I got over that a long time ago, and the teacher has finally moved past it too. She told me that many people at school have no idea what's going on with Mia, so they think the teacher is being cruel when she doesn't listen to Mia's whining. I've seen enough of the teacher's interactions with Mia to know that she doesn't do anything terrible, so I'm fine with the way she talks to Mia. I'll continue to keep an eye on her teacher, but I also told her that if anyone ever gets on her case about how she speaks to Mia, she should send them to me. If teachers don't give in to regular kids whining, why should they give in to Mia? The only difference is that regular kids whine using words, and Mia cries. If you spend any time with Mia, however, you quickly learn when she's crying "for real" and when it's just her trying to get out of doing something she doesn't want to do. She's a 7-year-old kid, after all - they all whine!

I'm very glad everything went well, and I hope that Mia's even better next year, when we hope her physical issues with her legs are far behind her (fingers crossed there!) and that she's eating more and has more energy. Also, the teacher and aides will have a year of experience with her, so some of the crap she pulls won't work as well then. Such is the theory, of course. But it was still a good meeting, and I'm more hopeful about her schooling than I have been for most of this year.

Tuesday, April 06, 2010

Norah's new school!

A few weeks ago, we received a advertisement in the mail about a new school not too far from where we live. It's actually not a new school - the school buildings are actually built, but a different school is moving in. It's still going to be a Mesa Public School, but within the district, there's a subset of schools called Benjamin Franklin Schools, which are, apparently, a bit accelerated and a bit stricter than the regular schools. We decided to give it a look just for fun, and Krys was fairly impressed with what they had to offer (she went to the presentation, but I had to stay home with the kids). The curriculum is harder and they don't let the kids run wild, which is always nice to see. In order to register her, we had to go to the presentation and observe their classes for two (2) hours. Sheesh! So last week I went on a couple of days to watch both the kindergarten classes and some of the higher classes. That done, today we registered Ms. Norah. Should be fun!

The observation was interesting. I have no idea what they're teaching kids in kindergarten these days, so I wasn't sure how accelerated they really were. They were teaching kids about symmetry with shapes, which seems a bit tough, but other than that, I couldn't really tell if what they were learning was so much harder than what she would learn in a "regular" classroom. Similarly, I couldn't even tell if the fourth- and sixth-graders were doing so much more than in a regular class. However, they were very well behaved. The kids were quiet and did what the teacher told them when they were told to do it - there was a bit of fuss, as they're still five- and six-year-olds, but not too much - and they listened very attentively. The schools have a not-too-strict dress code (no shorts, everything below the knees, that sort of thing), which is also keen. They emphasize the basics, of course, but they also have a lot of artistic and poetry projects. It seems like a good place. The school also makes sure the parents are involved, too, which I have no problem with whatsoever.

We think it will be good for Norah, too. I have no idea how smart she is (as her father, I'm probably a bit biased), but I think she can handle the "accelerated" curriculum. She is also, we think, able to handle the more rigorous discipline in the school. She seems to have the personality to deal with it. She's not a wild kid by any means, so I don't think she "needs" a tougher structure, but it's never a bad idea. I asked her pre-school teachers how she's doing with the work in her class, and they said she's gotten very good at sitting and doing her tasks without being distracted. Good to know!

So we'll see how she does in this school. She's looking forward very much to going to kindergarten and is bummed that it's still four months away. We're optimistic about the new school, and we'll be happy to help out with whatever she needs!