The Daughter Chronicles

Tuesday, April 18, 2017

How many mirrors did we break, anyway?

I'm often pensive about Mia, and no time more so than 18 April, the anniversary of her accident. Today it's been fourteen (!!!) years since she was in her car accident, and as I always do, I'm going to reflect on the last year. I have only posted twice since last April, because this past year has been very busy and I haven't had the time I used to. I plan on writing about Norah's final year of elementary school very soon, and next year the kids will go to new schools and I'll probably have some more time, but this year has been crazy.
We moved in June to Chandler, about 8 miles southwest of where we used to live. Both kids are in their final years at their respective schools, so we decided to keep them there for this school year and figure out what to do with them in 2017-2018. This means that I'm driving A LOT, because obviously they don't have bus services. So on Mondays and Fridays I drive Norah to school (8 miles) and then drive an extra 6-7 miles to Mia's school. On Tuesdays and Thursdays I drive Norah to school early for orchestra and then come home, and then I drive Mia to school a bit later. On Wednesdays I drive them both to school, but then I have to take Mia to hippotherapy, which is a good 15 miles further east than Norah's school. On Monday and Wednesday afternoons I currently only pick Mia up, because Norah goes over to her friend's house because they both play tennis at 5, so she hangs out there as it's near the court. On Tuesdays, Thursdays, and Fridays I pick Norah up and then drive over to get Mia. So yeah, a lot of miles on the van - no less than 70 a day, usually, for the entire school year. Good times! Plus, of course, I don't have as much time to write.

Mia has had a pretty good year, though, which is nice. A few crappy things have happened, which led to an even crappier thing, but I'll get to that. She's doing quite well in 8th grade, as she has the same teacher as last year but a new aide, who has attendance problems (she has some health issues and her daughter is special needs, so I assume that gets in the way occasionally - we know all about that!) but is much better than last year's - she was perfectly fine, but she wasn't tough enough with Mia, and sometimes you just have to be tough with Mia! So Mia is doing quite well at school - she's using a calculator to add numbers, which is keen, and she's doing very well with typing, even if it's hard for her to stay focused. She still behaves erratically, but they're doing a good job - as far as I can tell - making sure that she knows she's behaving poorly and keeping her from getting too wild. She seems to enjoy school a lot, and she even appears to have a crush on one or two of the boys.
Whenever I ask her for the kids in the class, she always mentions one boy first, so that might be an indication, but there's also a boy whom she tries to pinch a lot, even though she does it very cheerfully, so perhaps that's an indication that she likes him. As always, it's nice to see her acting like a 14-year-old, even if her actions aren't completely typical.

She continues to become more involved in her surroundings, as she learns (slowly) more words and is able to communicate a bit better. She's always been social, but as she gets older, she seems more interested in what's going on, even if she doesn't always talk about it. She recently got a new speech therapist, after almost two years without one, and we're hoping that he helps her communicate a bit more, as we know there's a lot going on in her head even if she doesn't always express it well. She's still getting into her stander at school, and that's a big help, and we're in the process of getting one for home. Ever since 2011, when her leg muscles inexplicably tightened up so severely she couldn't even straighten them for a while, much less stand on them, we've been working back to a point where she can actually stand (with help, of course). Over the past few years, she's gotten there, but by then, the gait trainer we had used when she was younger was too small for her. We've been taking our time getting a new stander in case things went sideways with her progress, but she's been doing well standing at school for a few years, so this year we got documentation together to get a new one. That's in the works, but of course it takes a while.
In the meantime, getting her talking more and getting her standing more will, we're sure, help get her more involved in her society. Next year she'll be in a program with quite a few more kids than she's been used to, so that will probably help, too.

The big annoyance we had this year was when someone reported us to the Department of Child Safety in February. A few things brought this about. In October, Mia fell down the stairs leading to our front door while she was strapped into her wheelchair. It was a rainy day, and packages had been delivered that were partially in the rain. I tried to move them and hold onto her chair at the same time and I let go of the chair for an instant, which is all it took for her to go down. She was not hurt badly - she cut the underside of her chin open and she chipped her front tooth - but of course she was a bit bloody, so it looked pretty terrible. We took her to the ER, they stitched her up, we took her to the dentist later that week, and they fixed her tooth. I was racked with guilt about it, of course, mainly because we had been talking about taking her out through the garage but we hadn't had a chance to clean it up yet (cleaning garages in the Arizona summer/early autumn is not advisable). We knew taking her down and up the stairs was a temporary thing, but it turned out to be one day too long. Now we take her out through the garage, where there are no stairs, and everyone is happier. But it was still a mess.

Then, in February, she fell over in the van. I put her in the back and, most of the time, I was strapping her in. We used to have a lock on the floor, but her new chair was too big and we couldn't maneuver it if we locked it, so we are relying on the brakes on the chair and the straps in the car. Of course, that day we were running late and I only put the locks on. I realized it while I was driving but figured I could make it to her therapy session. Whenever she wasn't strapped in, I would take corners very slowly, and I did on that day, but I guess I took it a bit too fast, because she tipped over.
The worst thing about it was that I was on a road where I couldn't pull over right away, so I think the jostling she endured as I found a side street was worse than the initial fall. She was fine - I kept talking to her and reassuring her - but she got a small bruise right under her rib cage where she fell onto the tray attached to the chair. I told them what happened at school, because I wanted them to know why she had a bruise, and of course I felt terrible about it. It's hard to keep her safe because she really has no reflexes, so if she falls in any way, she's not going to brace herself or try to get into a position where she's shielded a bit. So both incidents were totally my fault, but she was fine, so I didn't fret too much.

Then, a few days later, I went to Norah's school and discovered someone from DCS interviewing her ... without our knowledge, of course. This surprises me, because you would think that would be wildly illegal, but I guess it's not. I get it - they want kids to speak freely without being coached by parents - but it was still a bit upsetting. When she was done, I told the woman who I was, and she said she would like to interview me, too. Apparently someone at Mia's school - that's the only thing that makes sense - reported me to DCS for neglecting my child. The interviewer cited the two incidents I just wrote about, but also a few others, like the time someone at Mia's school pulled her feeding tube button out of her stomach and I told them to put a bandage over it and I'd take care of it when she got home. Apparently I didn't freak out enough, but here's the thing: It's happened before, it will probably happen again, and the doctor who put the button in told us that after a few months, it's like a pierced ear - it's not going to close up very quickly, so the best thing to do until you can get her to a place with a button - and they don't have one at school, nor would they try to put it back in if they did - is to bandage it and not worry about it. I told the interviewer that after your child has had two head surgeries, two hip surgeries, and two back surgeries, it's kind of difficult to get worked up about a button coming out.
I mean, we've seen it before, and it's fine. I told her that the two accidents were my fault, but accidents do happen with kids, and we're as careful as we can be. I was already feeling guilty about it, but to be told that someone thinks I'm being neglectful really upset me. The interviewer said she had to talk to Krys and check out the house, which she did a few weeks later. Even before she was done talking to Krys, she told her that she was going to close the case. We got a letter in the mail a few days ago saying the charges were completely unsubstantiated, and DCS was closing the case. Still, we had a lot of anxiety over it.

I get that people who work in schools are mandatory reporters of child abuse. I also get that DCS probably placed higher priority on this because Mia is a special needs kids. But it really bugged me, because I wonder who at her school reported me. It's anonymous, obviously, so we'll never know, but it's strange because the people who are closest to Mia know - I should hope - that I take care of her as best as I can, and while I'm not perfect, I'm certainly not neglecting her. So I wonder if it was someone who is on Mia's periphery, who doesn't know me and just sees a father not freaking out when something happens to his kid. I don't know. It's over now, but it was still quite upsetting. Such is life.

Mia is entering high school in August, which is amazing to us (I don't feel old!) even though technically she could have done so last year (we kept her in elementary school an extra year because we could). Our move means that she's going into an entirely new school district, but we've visited the school a few times and think it will be a good fit for her. We're keeping our fingers crossed! She didn't qualify for Extended School Year this year, which means she won't be able to go to school in June, which is a bit of a travesty, if you ask me. It's great that she didn't regress enough during last summer to qualify, because that means she's retaining the knowledge she learned, but part of why she didn't regress, I believe, is because she went to ESY last summer!
It's always a bit of a Catch-22 - if you qualify for ESY, you might not regress, which means you don't qualify the next year, which might mean you regress and qualify again! I'm very curious to see how she does in a new school with new teachers and aides and if she regresses this fall after not going to ESY. I hope she doesn't, but we'll see. She will be going to her summer camp, though, which is always a fun time.

This past year hasn't been too exciting, which is not a bad thing at all. She's working hard, she seems to be happy, and she's doing well at school. She still behaves badly sometimes, she still doesn't express herself as well as we'd like, but that's probably not going to change too much. We're excited to see what she does in high school! Plus, we're going on vacation in about six weeks, so that should be a ton of fun!

As always, I'll link to my previous updates: Here's the story of her accident, and here are the annual updates from 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, and 2016. I know I write that I'll try to update more often, but I want to this year, and given that I won't be driving them to and from school all the time, I'll probably have a bit more time. And of course I'll have to write about our vacation, because I think Mia will dig it. Thanks for reading, everyone!

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