The Daughter Chronicles

Friday, April 18, 2008

Another year gone by makes five

Today in 2003 I was in a car accident. Unfortunately, my daughter was in the back seat with me. Yes, it's the five-year anniversary of the event that changed our lives. As I always do, I refer you to the story of the accident in its totality, in case you're new around here (I get about one new reader every year, so this is for you!), and show some unpleasant pictures of Mia in the hospital here and here (nothing really horrifying, believe me, just sad). As I do every year, I want to focus more on her progress rather than worrying about the event itself. It's just shocking to me that it's actually been five years.

Last year at this time, she was still in pre-school, and kindergarten has made a huge difference (even more than pre-school, which helped her a lot). She has said a lot more things, and has begun to know her alphabet and numbers much more. She does a lot in school, like music, going to the library, and participating in adaptive PE, that would be tough for us to do on our own. As I've mentioned, she can spell her name and can sign it, albeit very roughly. She also knows her last name, which is kind of cool. She also knows most of the days of the week, and can often tell me which day it is without much prompting. The most frustrating thing about dealing with Mia and how she learns is that she finds patterns and learns that way, so when we step outside the pattern, it's hard for her to adjust. One example: she knows how old she is and how old Norah is. But she often gets the two ages confused, because I'll ask her how old Norah is without asking her how old she is first. She's learned to say "five" the first time someone asks her for an age, because we're usually asking about her, and "two" the second time someone asks her, because we're usually asking about Norah. If I ask how old Norah is, she'll say "five." I have to remind her that we're talking about Norah, and that usually points her to the correct answer, but it's frustrating. We know there's learning going on, but it's not terribly creative learning. But it's something, and we're always working on getting her to think about what we're asking before she simply answers the rote way.

Her therapy is also moving along, although it's moving along very slowly. She is walking better every time, but by tiny increments. She uses a treadmill at school and does quite well on that, and both her PT and horse therapist (who is also a PT) have been making her walk quite a bit, and she is "scissoring" much less. Scissoring is when her leg, when she steps forward, crosses midline and blocks her opposite leg from taking the next step. She usually scissors with her left foot, coming across the right and practically tying her up. She does this because her brain is not sending messages to the correct group of muscles, so her adductor muscles (on the inside of her thighs) fire instead of her abductor muscles (on the outside of her thighs). This pulls her leg toward midline. It's a pain in the ass, naturally, but after two years of work, she's doing it much less. Of course, she still does it far too much, especially when she's a bit tired (which she often is), but it's not as bad as it's been. Progress is good! Her fine motor skills have improved, but only marginally, and although her speaking has improved, she is exercising control over her environment the only way she can, which is by remaining silent when we ask her questions. She knows what she wants, but she shuts up and smiles at us. Then, when she does answer, she often speaks so quietly that we have to ask her to repeat herself, which (we think) makes her doubt whether she said the right thing and makes her speak even more softly. Oh, the vicious cycle! This frustration also seems to make her clench her entire body, which she's been doing for some time now. We think she gets frustrated that she either can't express herself better or can't do something, and she clenches. She only does it for a second, but she does it a lot, and it's bizarre. It bothers Krys more than it does me, but it's still annoying. For more of her physical skills, you can check out the videos I posted of her. I've been meaning to get more of them on video, and I have filmed Norah reading, but I haven't posted it yet. I'll get to it, I swear!

She's learning in other ways, of course. She sings along with a lot of the DVDs we show her, and she loves when Krys sings "You Are My Sunshine" to her. She even requests it when Krys says good night to her. She has a very good memory, but the hard part is getting stuff into her memory. Once it's in her long-term memory, it's there for good. I wrote about our toilet training with her, and in the past week, she's managed to poop twice more on the toilet, which is always nice to see. We don't know how successful she'll ever be on the toilet, but any little bit helps.

Now that Norah is a bit older, we can go out to kid events, and Mia loves doing that. This year we went to see Elmo and the Sesame Street gang, and a few weeks ago we saw the Wiggles (I didn't write about it because it was largely uneventful, but the kids enjoyed themselves). We've been to the zoo, and she went fishing with her class. So she is getting out more, and I think she really likes going places, even though she often can't really participate much. I think she just likes checking new places and people out. She's a people person, after all!

We're very proud of her, of course, because she's had to endure so much but she always has a sunny disposition. She loves meeting people and going to school, and she's always happy to do almost everything. Occasionally she gets grumpy about walking with her physical therapist, but she doesn't get mad to the point of not trying. She's very good with Norah, even though last week she was smacking the little one in the head. Norah, it should be pointed out, was draped across Mia's keyboard, hindering her, so Mia bopped her. I told her to stop it, but I also told Norah that she needs to let Mia play, because Mia can't just get up and get a new toy. Norah is starting to understand a tiny bit that Mia is somehow "different," which will be an interesting journey for us as she starts to learn. Whenever Mia falls over when she's sitting on the floor, Norah tells her to "sit up," which is funny but very sad. Recently Krys has been telling Norah that Mia has a "boo-boo on her brain," and Norah repeats it. We'll see how that goes. But the kids are still very good together, and we hope they continue to play nicely with each other. Mia loves hugging Norah, and Norah gives her a good-night kiss each night. It's very cute.

I have mentioned before how we try not to think about the situation Mia is in, but it's practically impossible. I have also mentioned that I'm sad almost all the time, but it's something we just work through. Mia is not aware and might never be aware of her limitations (according to her PT, who knows these sorts of things), and she's so very happy to be alive (of course, so are we), so we just do what we can for her. Her progress is extremely slow, but we've taken a very long view of her life, so if she doesn't make huge progress day-by-day or month-by-month, we're not that perturbed. We figure that she has at least 13 years to make progress toward independence, and probably for some time after that. Our ultimate goal is for her to achieve some kind of independent living, and that is something we're working toward, but she doesn't have to be independent next year, after all. So taking the long view works for us.

It's amazing how quickly five years seems to have gone by. We focus on getting through each day, obviously, but it really is interesting to look back and assess what has happened. It's tough, because Norah has made more progress in the past six months than Mia has in five years, but obviously, they're on different timetables. Mia has come very far, and it's more pronounced when people don't see her for a long time. My parents and my sister are always shocked by how far she's come, as they don't see her that often. Her accident has changed us a lot, too. I think we've become better parents (even though we were awesome before her accident, of course!) because we've had to change the expectations any parent has for their kids. We've focused much more on smaller things, and I think that's made us appreciate every little thing both the kids do. It's certainly helped me be more patient with Demon Child #2, who is a fairly typical 2-year-old. People often express wonderment that we can handle having a disabled child. That's a nice if misguided sentiment: what the hell else are we going to do? She makes us better parents, which in turn will make her a better child.

So we look forward to many more years with her, helping her grow and learn and become more independent. I have no idea how far she'll go. Maybe she won't go much further than she is now. Maybe she'll be able to live on her own. We'll see. For now, we are thankful for each day she's alive, because she almost wasn't. And that's enough for right now.


  • I don't have any specific comment to make... this is the first time I've come across this blog (I was reading the comic-book reviews and it directed me here) but I just wanted to thank you for posting it... I'm 39 and don't have any children as of yet, although I hope to someday, but I'm very interested in the kids around me (the children of good friends, etc.) and am fascinated by the way they change over time...

    Anyway, thanks for doing this. That's all I really wanted to say.

    - Paul W.

    By Blogger Paul, at 19/4/08 9:21 AM  

  • Well, I suppose you don't get all religious about stuff. But my prayers for both of your daughters, your wife, and maybe especially you. I can be prone to depression, so I recognize being sad all the time.

    By Blogger Roger Green, at 19/4/08 10:17 AM  

  • Thanks, Paul. I hope you come back occasionally!

    I still appreciate it, Roger. It's always nice to know that people are thinking good thoughts about you!

    By Blogger Greg, at 19/4/08 4:15 PM  

  • Greg,

    I went ahead and wrote a few lines about this column and posted a link to it in my not-quite-weekly comic-book review blog, Hoopla! I hope that's okay...

    I realize your column has nothing at all to do with comics, but it really affected me and I wanted to share it with my readers (of which there are not so many... so you don't have to worry about the internet being cracked in half or anything)...

    - Paul

    By Blogger Paul, at 19/4/08 6:09 PM  

  • Just wanted to say a couple of things
    1) Mia and Norah are both gorgeous. You are very lucky -and they are very lucky having you too. A nice symmetry!
    2) Thank you for writing about your experiences as a parent. I find them fascinating - as another parent - but also because I work developing services to help adults with learning disabilities (developmental delay) to live as independently as possible. It's definitely worthwhile, but hard work. Reading your blog reminds me of the young people and their parents who I'm working for (a link it's easy to lose dealing with agencies at a strategic level). Thank you for your honesty and insight in your posts.

    By Blogger Custancia, at 27/4/08 11:29 AM  

  • Thanks for the nice words, Custancia.

    By Blogger Greg, at 27/4/08 2:23 PM  

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