The Daughter Chronicles

Tuesday, December 27, 2005

Comparison shopping

One of the most frustrating things about raising Mia is that we have no frame of reference, since she is our first child. Now that she's in school, we can tell a little bit more how three-year-olds act, but all the kids in school with her are in some way impaired as well (although not as badly as she is), so it's still not a perfect comparison. With the arrival of my sister and her two children, one of whom turns four next week, we can see a little bit more how much she's actually behind.

It's not pretty.

We know that she is still very delayed, and we know that she has a lot of work to do, but to put her next to a kid who is only eight months older than she is and has a similar upbringing (my sister and brother-in-law are comfortable in the suburbs, not unlike Krys and I) is to get a sense of what we're missing. Matthew is a fine kid, and he runs around and plays with toys and talks quite a bit, and he actually likes Norah more than Mia because we're pretty sure he doesn't quite know what to make of Mia, since she's a kid who is his size but she doesn't run around and play with him. Norah he can handle - she's a baby, so of course she can't do anything! He has gotten friendlier with Mia, but I still don't think he knows quite what's going on. She, of course, loves everyone and says "Hi" to all.

Having them here has been interesting, but I think it's been frustrating for Mia as well. She has been watching Matthew and his sister, Lindsay, tear around our house and throw toys everywhere (I get to pick them up - yay!) and although we sit on the floor with her and they play around her, it seems like she's very aware that something is amiss. It doesn't seem to bring her down, because she's been very pleasant, but you can see it on her face occasionally, as if she's thinking, "I'm the same size as that kid - why can't I do what he's doing?" She doesn't seem to look the same way at school - again, maybe it's because she's gotten used to the kids, or maybe it's because they're impaired as well.

One thing I've noticed about the two of them is that Mia is much friendlier with adults. She sat with my sister and her husband and has no problem saying hi and chatting with them. Matthew, on the other hand, has not warmed up to me or Krys yet, and Lindsay is even worse. Mia has no problem with strange adults, because she has met so many of them. She isn't shy at all - maybe for about a minute or two, but then she's ready to chat. Matthew has said a few words to me, but he'd rather not.

It's been fun having them visit - I haven't seen my sister in three years, and I had never met their daughter, who is 17 months old. I still have hope that Mia will catch up, and although it's depressing to watch where she should be, it's also interesting to see what she needs to accomplish. She'll keep working, because we won't let her quit.

Saturday, December 24, 2005

The Daughter Chronicles has been slow lately, but we still celebrate holidays!

I apologize for the lack of updates. I think three or four people still read this, and I know you want information about the two Demon Children. It's the holiday season and my parents, sister, brother-in-law, nephew, and niece have invaded Arizona, so I have had absolutely no time to do anything relevant. Mia and Norah are groovy - just look how happy they are in the picture!

Merry Christmas, everyone. And Happy Hanukkah. And have a great Sol Invictus celebration. And whatever else you feel like celebrating. I'll be back soon!

Thursday, December 15, 2005

The plateau

When Mia first started therapy after her accident, her therapists told us that she would make progress, then regress a bit, then progress again, then either reach a plateau or regress a little. They told us that this is pretty common among patients with brain injuries, and we should prepare ourselves.

One thing that is difficult with Mia is accepting this idea. Mia has made a lot of progress in the two-and-a-half years since her injury, and we're very happy that she has come so far, but recently she's reached one of those plateaus. It's been a while since she hit one, so this one is bothering us.

It's been a frustrating couple of weeks here, because we know she knows how to do a lot of the things she is not doing right now. This particular wall, I think, has to do with her chair. She had a chair that was fitted for her, and that worked okay for a while, but it had no pommel between her legs, and eventually she began sliding down the seat, which was covered with vinyl and was therefore slippery. She also began to outgrow the seat, so it was becoming uncomfortable for her. As she was sliding forward, she was slumping drastically, so we decided to try something different. We had a regular kids' seat with a cloth seat, which would not allow her to slide forward, but it was significantly wider than the other seat and - most important - it has no support for her feet. A foot support allows Mia to sit up much better. But we thought she had come far enough to sit by herself.

Well, she's been using this seat, strapped to a kitchen chair, for a few months, and it seemed to be fine. She had a tough time sitting in it, but she was able to pull herself up and sit decently. In the past few weeks, however, she has been sitting in it more poorly. She is slumping very badly to the left, the side to which she always slumps. It's worse, however, recently. She's also leaning to the right and forward more, and although it's not that bad, it's tough for her to keep herself upright. This has led to her feeding herself less, because she's spending so much time trying to stay upright.

I believe that her problems with her chair have led her to become a bit more lazy in other aspects of her therapy. She's doing well enough with her gross motor skills - she is walking in her gait trainer okay, and when her PT makes her walk on her own (with his and my help) she does okay. Her fine motor skills, though, have deteriorated a bit. She used to be able to eat things held in her left hand - not well, of course, but she could still raise her hand to her mouth, at least - but that has fallen off. Her left arm is much stiffer than it has been - she keeps it straight far too much, and it seems that it's a consequence of trying to balance in her chair. As a result of keeping her left arm straight, she can't raise it to her mouth anymore. Whenever I put food in it, she simply brings her arm across her body instead of raising it to her mouth. So that's something to work on.

Her language skills are improving, but very slowly. She's still understanding things fine, but she is still having problems retaining new words. I'm not quite sure why.

Part of the problem is, as I'm sure I've mentioned before (but can't be bothered to find it and reference it), is that her innate memory has been damaged. It takes her a very long time to internalize things, and even after we think she's done it, things can fall out. So there are some things we haven't worked on in a while after working on it incessantly until we thought she had it, but when we return to it, she has forgotten how. This is most evident in words that she used to use, but it also comes up in certain movements. We worked on them until she was able to do them rather successfully, and then we moved on to something else. The problem is, you can't assume she will retain what she's learned. So we're trying to return to things sooner and more frequently so that she doesn't lose them. Her speech therapist told us that kids with brain injuries need to move around in their sounds often, so that they don't get bored with the particular sound they're practicing, but also so they don't forget the ones they've already learned. Mia becomes focused on the current sound, to the exclusion of the others that she already "knows." So then we have to re-teach her things she learned a few months earlier.

A lot of this, I assume, is what any parent goes through - kids are notoriously single-minded until they find the next bright, shiny object, and then they forget about whatever had captured their attention moments before. Mia's attention span has been slipping, too, which makes it harder to teach her stuff. She used to sit with Krys and read books happily, but now, after two or three pages, she's "all done" (she does the sign for it repeatedly). She also looks around constantly and points at every little thing and asks what is it, even if Krys just told her seconds before. She's the same way while eating - I give her a spoonful of food, even something she likes, and she immediately signs "all done." I wait for her to do it, then give her some more. It's not that she won't eat it - she just has to sign in between mouthfuls. The annoying thing about that is that the sign loses all meaning - we can't allow her to be all done every time she signs it, and we aren't sure when she actually means it. Annoying.

We got some encouraging news from another parent this weekend, however. Krys was at the mall with Mia and a nurse at Phoenix Children's Hospital was talking to her. She told Krys that her daughter had a brain bleed when she was born, and she was similar to Mia when she was Mia's age. She's now 16 and in fine health and on the swim team at school. We know that so much of Mia's prognosis is cloudy and so much of her recovery is really up to her, so it was nice to hear about a story that sounded like it began similarly end up well. The problem with being a parent of a kid like this is that we see the daily grind and aren't able to get the whole picture. I'm sure that when my sister arrives next week she'll be amazed at how well Mia is doing (she hasn't seen her since before her accident). Whenever my mom visits she says the same thing. If you don't see Mia for a few months, her progress probably looks very nice. But for us, it's harder to see. That's why we're in this for the long haul!

Wednesday, December 07, 2005

Ignoring is bliss

Krys cannot ignore Norah. This is a shame. You might think this is a good thing, but it's not. How can you be a good parent if you can't ignore your kids?

Okay, you shouldn't ignore your children. But consider: sometimes you have to. In the morning, I get Mia ready. So I take her in the bedroom and lay her on the bed. She gets her medicine, which is always fun, and then she gets her teeth brushed and her face washed. Somewhere in there I get her dressed, and then comes the hair-combing. Oh, the evil of hair-combing! Mia lies on her left side when she sleeps, and her hair is naturally thick and curly, so that side gets matted down and tangled. In the morning I spritz her with detangler and go to work with the brush. After a minute or two of that I give her the comb. Oh, mean old daddy! How could he be so cruel? In order to lodge a protest against such horrific tactics, Mia screeches at the quite literal top of her lungs. Perhaps Homeland Security will help her if they hear her!

So while all this is going on, it's difficult to pay attention to Norah. She is at that age when she wants constant attention (wait, you mean they ALWAYS want that?), so the twenty minutes or so I spend dealing with Mia is unacceptable to her. Therefore, she cries. A lot. But I ignore her.

Krys is, of course, the absent and exotic parent, so they love her so much more than boring old daddy, and on the weekends there is no need to ignore Norah, because while one of us is getting Mia ready the other can hang with Norah. However, occasionally as parents we need to ignore the kids. I've become quite good at it. If Norah doesn't like it, let her crawl into the room where I'm dealing with Mia and do something about it!

Friday, December 02, 2005

The Great Debate

No, it's not whether we should withdraw from Iraq. No, it's not whether we should teach creationism in biology class and subvert all science and allow the fundamentalists to make our children ignorant.¹ No, it's not whether the Supreme Court should overturn Roe v. Wade. I'm talking about The Greatest Debate Of Our Time!!!!!

I'm speaking, of course, of what should the baby suck on: thumb or pacifier? Oh, the humanity! Oh, the horror! Norah wants to suck on her thumb. We've started her on solid foods and she's getting hungrier and hungrier. So she chews on her hand and sucks her thumb. I don't want her to suck her thumb. I give her a sucky and she digs that, but it often falls out. She doesn't have fine motor skills yet, so she starts sucking her thumb again. She likes the pacifier, but can't keep it in her mouth long enough. What to do? What to do?????

Why don't I want her to suck her thumb? I don't know. It's pretty much the same thing as sucking on a pacifier. But it bugs me. So I hope she learns to keep the sucky in her mouth. But the debate continues!

¹ Gee, can you tell where I stand on that particular topic?