The Daughter Chronicles

Saturday, April 18, 2020

Not even Kip Winger wants to celebrate this anniversary!

Today is 18 April, which means, once again, that it's the anniversary of Mia's car accident, which I grimly write about every year. On Good Friday, 2003, I was struck from behind by a flatbed tow truck while my car was motionless on the exit ramp to Chandler Boulevard off the I-10 South. He hit us while he was going approximately 60 miles per hour, and permanently damaged our 7-month-old daughter. Such is life.

These updates aren't as momentous as they used to be, mostly because Mia has settled into a nice routine, and luckily, she doesn't have to have much done to her these days. Last summer, she went back to her summer camp, which she's gone to for over a decade, but this time Norah went with her as a volunteer. She and Norah weren't together - Norah had a class of younger kids to deal with - but they saw each other occasionally, and we always think Mia likes seeing her sister, even if she doesn't express much enthusiasm when she does.
The same thing happened this past school year. It was the first time Norah had been in the same school with Mia, and she told me that she would see Mia every once in a while, and Mia would usually either point at her or say nothing. Mia doesn't respond to questions very quickly, so if Norah asked her who she was, she often would say nothing. You have to coax it out of her, and Norah never had the time. But Mia did get to see her sister every so often, and we think she likes that, even if she doesn't express it.

This school year was a bit more bittersweet than the others, as this would have been Mia's senior year. We're kind of bummed, because her cousin is also in his last year of high school, and while we don't speak to my sister all that often (as she lives 2000 miles away), we've still been hearing a bit about his preparations for life after high school. Mia gives all indications of being a smart girl, so we're wondering what she would be doing right now if the accident hadn't interrupted. We're going to keep her in school as long as we can, obviously, so it will still be a few years before we have to think about what to do with her. But it's still a bit sad, because we'll never know what her plans would have been if she had been able to make them.

She's turning 18 in August, too, so we have to move forward with taking over guardianship of her. In Arizona (and, I assume, in other states), if you have a special needs kid who can't live on their own, when they turn 18 you have to go to court to get guardianship of them, given that they're technically adults. I've had a few conversations with a parent who's gone through this, and it doesn't sound like too painful a procedure, especially in Mia's case, where it's clear she can't live on her own (it might get sticky if the kid is mobile and mentally able to live on their own but, for instance, might be taken advantage of because they're too trusting).
Her lawyer has already mentioned it, and that's something that will be coming up in a few months.

As for this last year … nothing much has changed. She's doing well, both in school and physically. She keeps working on basic skills, and she's doing quite well with those, and she still loves school. They were able to procure a chair much like the one we got, that converts into a stander, and she's been using that a lot at school, which helps her muscles and gets her out of her chair, which is always nice. She's still getting her therapy, both in school and at home, although that's slowed down a bit, not surprisingly. She's been very healthy, as usual, and while her seizures continue, she seems to be in a down period right now, as they haven't been coming in as great a frequency as they were for a while there. I don't know if just being at home and being relaxed all the time has helped, but they seemed to be tailing off even before the schools closed, so maybe that's not it. She's been getting more sleep recently, obviously, which is nice. Her school bus was picking her up at about 6.10 in the morning, which is no fun for anyone, so just the fact that she can sleep past 7 probably helps her. One of the weird things that has happened recently is that she lost weight. We saw her gastroenterologist in January and she had lost about 6 pounds, which is pretty significant for someone who still hasn't cracked triple digits in weight. She was down to about 85 pounds, and I had no explanation for it. She was still being fed her regular amount, she still eats solid food sparingly but consistently, and it's not like she started a new exercise regimen or anything. The doctor wasn't too concerned about it, just puzzled. We're feeding her a bit more than we had been, but I guess we won't find out if her weight is back up until we head back to the doctor … and who knows when that will be! It's just a bit strange, is all.

Of course, the big news is that she hasn't been to school since 6 March, and her therapies have been severely limited. Her teacher has dropped off work for her to do, but she's spectacularly bad at concentrating when she's at home, so we haven't even tried to get her to do work. We think that she knows school is the place to work, so even though they let her watch television occasionally, she still does work there. Plus, of course, her teachers and aides are quite good at their jobs! When she's at home, however, she knows that's the place to watch television, so even if we try to get her to work, she gets too distracted. So she's been watching a lot of television, unfortunately.
She was getting therapy at school, of course, and that's not happening anymore. Her physical therapist, who comes to the house, has been shut out of homes by her employer for several weeks, so she's not getting that. Her occupational therapist decided to distance herself, and then last week she called me to tell me that she was moving out of state, so she won't be back. That's great for her - she's a very cool person and I hope she does well - but not great for Mia, even though she wasn't getting OT recently anyway. I hope that by the time this is over the clinic she goes to will have hired a new OT. We shall see. She is still going to horse therapy, which is nice for her. The clinic isn't that big, and most of the parents have voluntarily kept their kids away (a lot of special needs kids have immune system issues), so she's only in contact with 3-4 people when she goes, and it's good to get her out of the house and out in the fresh air. She's also going to her other therapist on Sunday, whose also stopped seeing most people in person, so her circle has shrunk as well. Mia needs to move around a little bit, and while we try to get her into her chair and get her standing often, it's nice that she's still able to get some therapy to go along with it. I always joke that everyone has a certain amount of health "bad luck," and Mia used all of hers up in one shot, so she's now indestructible. She never gets sick, and she hasn't shown any signs of coronavirus symptoms at all (none of us have, which is fine with me). So while I wish she were still in school, at least she's able to do some things and she's certainly not bored, because she gets to watch a lot of television!

There's not much else going on. We took her to Pennsylvania in July for our anniversary party, and she had a grand time. My parents visited over Christmas, and while Mia doesn't seem to care who's around her at any given time (even if it's her mother and father), she does seem to like seeing her grandparents. My mom came out in March, because I was supposed to go to Seattle for the comic book convention and she was going to help Krys with Mia, but even though that was canceled, we still told my mom to come out.
Looking back, maybe that was foolish, but we all survived. So Mia got to hang out with her grandmother a bit more. We hope that my mom, sister, and her kids are still coming in July, but we'll see. Mia continues to do well, and we're just happy that there's nothing upsetting her routine too much. Her health is fine, she's still learning stuff (slowly, but still), and she seems perfectly happy (most of the time; she's still a teenager). Obviously, we're happy she's alive!

If you're interested and missed things, here's the post about her accident. And, of course, my annual updates: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018, and 2019. Thanks, as always, for reading. I always hope I'll update more than once or twice a year - we'll see going forward!


  • I always love these. I hadn't thought about the "turning-18" thing.

    By Blogger Roger Owen Green, at 19/4/20 6:08 PM  

  • Yeah, it's one of those fun things you wouldn't know unless you have a special needs kid. In a lot of cases, I think it has to do with finances, as in the kids are, as I noted, too trusting or they just don't understand money that well, so the parents are in charge of that even though the kid can live on their own. With Mia, it will be more, I think, a rubber stamp to keep letting us do what we're doing.

    Thanks for reading, as always!

    By Blogger Greg, at 20/4/20 9:57 PM  

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