The Daughter Chronicles

Thursday, April 26, 2007

Mia's political views come out!

This morning the child and I were watching Good Morning America. Diane Sawyer was interviewing Senator John McCain. Mia, as is her wont, said, "Dat?" and pointed at the senator.

I said, "That's a Bush sell-out."

She replied, "Shell-owt."

We'll make a good liberal of her yet!

Wednesday, April 18, 2007

Another year gone by

I know I shouldn't dwell on it, and I don't, but I'm always very aware when the anniversary of Mia's accident is. It's today, by the way - on 18 April 2003 she was in the car accident that damaged her. As I have done before, if you're wondering what exactly happened to Mia, go here and read all about it. I have also linked to pictures of her in the hospital before, but I'll do it again - but with the warning that they're not particularly fun to look at. See here and here if you like.

I like to reflect on how far she's come in the past year when this anniversary comes up instead of thinking about it. She has made wonderful progress in the past twelve months, and we remain optimistic about her long-term prognosis. Pre-school has helped her over the past two years, and especially this year, as she is interacting much more with her classmates and learning to repeat more and more words. She is difficult to understand when she speaks, but once you spend a little bit of time with her, the words become much clearer (this is common with children, I guess). She's becoming very good at repeating what we say to her and retaining more words, and we hope that she will begin speaking in more sentences in the next year. Right now she says "I want _____ please" and that's about it for sentences. But she does string more than two words together occasionally, even if it's "Sit Mama please" (a common request; and no, she never says "Sit Daddy please") or "Sit chair please" or "Now up please" (yes, she really does end every utterance with "please"). She has also begun to come out with words that we didn't realize she knew, but has heard many times. She's also doing better with paying attention. We read her "big people" books at night before she goes to bed, and we often think she's not listening because she's drinking milk and we're reading a story that's too complex for her. Then suddenly I'll read a word she knows and she'll either repeat it or, in some cases, connect a word or action she knows to it. If I read the word "heart" she'll pat her chest and say "Buh-Buh!" (Like a heartbeat, you know.) So we know she's paying attention!

We're also very proud of her physical progress, even though I think that's going a bit more slowly. She is doing pretty good with fine motor skills, even though she can't use her left hand. She can grip a pencil the correct way and use it for rudimentary drawings like straight lines and circles. Her OT is working on that and cutting with scissors, which she can also do pretty well even though she can't stabilize the paper with her left hand. She does enjoy doing those sorts of things, so we hope that once she's doing it more often in kindergarten it will become easier. She's still not walking or standing on her own, but her PT is working with her without any kind of support, and that's going fine if very slowly. Whenever she takes a step, her hips fly out the opposite way, which of course causes her posture to collapse and inhibits her stepping motion. He's been working with her and trying to get her to keep her hips aligned, but it's hard because she doesn't like it. Like most tasks, she can do pretty well when she's not thinking about it, but because she hasn't internalized the muscle action and because her brain doesn't send the correct messages to the right places, once she pauses to think about what she's doing she gets really messed up. But she's still working hard. We think her hippotherapy will help a lot, because she works on her balance there. Her therapist is very happy with her progress, and we expect it to continue. We're still not sure if she'll ever walk without help (probably not), but at least if she could be able to use a walker, that would be something.

So she's made great strides over the past year, and we don't doubt that she will continue. I'm going to visit some of the special education classes they offer in kindergarten over the next few days, and we'll begin to formulate a plan of action with regard to her education over the next year. She's such a wonderful child and can learn a great deal, but at a slower rate than most kids. I don't have any doubt that she will be able to do well in school as long as we can find a place that goes at her speed. In four years she has come a long way, and we're proud of her every day. We just hope that she continues to make progress, because her therapists told us when she first started with them that with kids with brain injuries, there's no telling how they will do month to month. They might plateau or even backslide. Mia has plateaued occasionally, but we don't think she's ever gone backward, and that gives us hope. The nice thing about even her PT is that she really wants to do things. Even when her PT is making her walk with very little support and she's bawling her eyes out, she continues to work, albeit very reluctantly. And most of the time in PT, she works fine - some days just aren't for walking, apparently. This desire to learn can only help her in the future, and we hope she doesn't lose it. There's no reason why she shouldn't.

Four years ago today our lives were changed completely. It's astonishing to think how different our lives would be if Mia hadn't been in the accident. It's no use to fret over it, and we're trying to do the best we can. Mia makes it a lot easier, because she is such a happy and strong kid. I'd just like to thank everyone for reading this and saying such nice things about her, because I really appreciate the support, even if it's over the Internet. I know that there are people I know who read this who still haven't met Mia, and I hope that changes some day. She's a people person! Just ask anyone who's ever met her: she smiles, sticks her hand out, and says, "Hi!" She just loves life, and that's what makes it all worth it. It certainly hasn't been easy (raising any child is hard!), but it's been a joy to watch her grow into a beautiful and wonderful little girl.

Tuesday, April 17, 2007

Mia and Norah on the go!

Last week Mia and Norah were out and about. It's been a very nice few weeks here (as opposed to the East, which is apparently being alternately hit with snowstorms and flooded) after the one week where it reached into the 90s, and so it's pleasant for the kids to go out in front of the house and play. Mia enjoys walking down the sidewalk in her gait trainer, so whenever the weather permits (soon it will be too hot), I like to take her outside. Here are some fun pictures of the two of them:

Both Norah and Mia are strangely obsessed with the lamppost right on the corner of our lot. They both smack it enthusiastically whenever they walk by.

Norah, of course, likes to stomp around. She's 22 months old.

Again with the pole!

Just a nice spring day out with the girls! Nothing but fun!

Tuesday, April 10, 2007

Mia begins to get ready for kindergarten

Yesterday (the 9th) we had Mia's MET meeting. Whatever is an MET meeting, you might ask? It's her Multi-disciplinary Evaluation Team meeting, which means that a bunch of teachers and therapists get together to discuss into which kindergarten program we should put her. Nothing was decided yesterday, but we got a preliminary idea of what is available to her next year.

The participants were her pre-school teacher, her speech therapist, her physical therapist (her occupational therapist couldn't make it), the school psychologist, the Traumatic Brain Injury specialist for Mesa School District (who knew they had one?), a district demonstration teacher, and a kindergarten teacher (whose name was Jan Hammer, which made me think of the guy who wrote the theme music to Miami Vice). They had been evaluating Mia over the course of a few weeks and months, and they had the options for us.

Mia's evaluation didn't tell us anything really new, as we already are aware of her problems. The school psychologist threw a number at us - 69 - that we thought might have been her IQ, but we weren't sure. She did say that it's kind of pointless doing an IQ test on someone so young with such a disability, because it can change up to 15 points by the time she's seven, which is when it usually stabilizes. So we're not sure if that number was her IQ or if it was the result on one of the battery of tests they had her take. It doesn't really matter, I suppose.

We heard about the options for her schooling. We don't want her in a regular classroom, because they go much faster than she could handle. We do think she should be in a regular classroom for some of the more social stuff, and that's an option. Mia has done much better now that Norah is beginning to do more things, and we think that she would learn a lot from "normal" kids if she were among them for a while, at least.

We don't have all the final options, but they did mention that there was a class where they teach kids to use a keyboard instead of teaching them to write, and we got a bit worried about that. There's a class where they teach a normal kindergarten curriculum, just much more slowly. We'd like Mia to be in a class that is as close to regular as possible, because the former option doesn't sound very good. We need some clarification, but it sounded as if they were going to teach the kids on a keyboard and never teach them to use a pencil and paper. For kids with muscular dystrophy, this makes sense, as they will never have fine motor skills. The problem with Mia is that no one is sure how far she'll progress. I have been going to a support group for dads of kids with disabilities (a post for another day!), and most of the kids have autism or muscular dystrophy. From the little I've gleaned from those meetings, it sounds as if they have a pretty good idea of where the kids will always be. That's not the case with Mia - she could go very far, or not far at all. So we want to keep her learning as close to what everyone else gets as possible. I spoke to her home OT today about her use of a pencil, and she says there's no reason to think she won't be able to use one. It's just the teaching of it, which takes a longer time than with regular children.

We're not sure what the district would recommend. We'll see. We still have to get the final draft of the paperwork and all the recommendations. We're going to talk to her at-home therapists and get them to write up some sort of report about her short-term progress. I know the teachers and school therapists are looking out for Mia, but they have other considerations too. All we care about is Mia. They did offer to take us into some of the classrooms in order to check them out, so we're going to set some visits up. It's somewhat important to do this, because they don't really have any standard documentation about the classes are run - they claim it's tailored to the child. We'll see.

The more important meeting will be for her IEP, which we haven't scheduled yet but will soon. That's much more Mia-intensive, and sets up her benchmarks for the kindergarten year. That should be a fun meeting!

Thursday, April 05, 2007

There should be much rejoicing, apparently

Norah Burgas. Age on 4 April 2007: 1 year, 9 months, 13 days. The accomplishment: she peed in the toilet.

And there was much rejoicing.

She really likes sitting on the toilet, but until last night, hadn't done anything. Last night she did. Krys cheered, did the toilet dance, and indulged in mirthful enthusiasm. Now we'll see if Norah does this consistently. I remain skeptical that she will. But I wouldn't mind!

Monday, April 02, 2007

Mia's ever-expanding vocabulary

We've mentioned more than once that we want Mia to recover more on the mental side than on the physical side. Yes, it would be nice if she could be mobile on her own, but we really want her to be able to function on a mental level, because there are a lot more devices to help on the physical side. So we've been trying very hard to get her to speak more, and she's making some good progress.

She has recently gotten a tiny bit better with colors. She was holding a blue crayon a while back and said "blue." Krys gave her a yellow crayon, and after she said it was purple (her default color; we're not sure why), she successfully identified it. Her occupational therapist is working with her matching colors, and she's gotten much better at that. Which is nice.

She's getting better at identifying more things. She has Sesame Street characters on her diapers, and she is able to tell me which one is Elmo pretty regularly and which ones are Ernie and Big Bird with less frequency, but still pretty well. Elmo is the first one she says all the time, but if I correct her and she looks more closely, she can usually get the character the second time. She also said Elmo was red the other day, which was nice.

Although Krys reads her the same books over and over, it's still nice to see her memorize parts of them. She knows Fox in Sox very well, and loves it. In most of her favorite books, she's able to anticipate what's coming up, and is telling Krys what's going to happen.

Her speech therapist has been working with books, too, and her favorite is probably a book she has that explains how your body works. If you ask Mia what her heart does, she pats herself on the chest and says "Buh-BUH!" and if you ask her what her lungs do, she will breathe very deeply.

She's also starting to repeat the last word or two of sentences we say. If I say something like "Do you need to be changed?" she'll say "change." Some of the words are unusual and she hasn't attempted them very often, so she mangles the pronunciation, but it's pretty clear that she's trying to say them. That's nice to hear, because it will help her build a vocabulary.

We still have a lot of work to do with her, but she's getting much better at communicating what she wants. She even said "poop" not long ago and then actually did so, which was nice. We're hoping that as she gets more into school next year, she can communicate even better. She has a lot on her mind, and she wants to be heard!