The Daughter Chronicles

Monday, June 30, 2008

Back from the eastern lands

We have returned from Pennsylvania, and I thought I'd write about our vacation in two different parts. On this blog I'll write about the kids and how they handled the whole thing, and over at Delenda Est Carthago I write about the other aspects of the trip. Mia and Norah deserve their own section, after all!

We left on the 19th on the red-eye to Newark. The kids enjoy flying a lot, so we didn't think it would be that big a problem. We hadn't flown with Mia in a long time, so we weren't sure what we were going to do with her wheelchair. We also had two car seats to put on the plane. I wasn't sure if they needed them, but Krys insisted that Norah, at least, would. They let us on the plane first to set up the car seats, which was nice of them. Krys got Norah into her seat okay, but Mia didn't fit. She's kind of long, and her legs just weren't getting there. So we checked the car seat and let her sit on her own. Krys sat in between them and helped Mia sit up until Demon Child #1 decided to rest her head on Krys's lap and fall asleep. Norah, meanwhile, loves flying, so it was good that she was sitting next to the window. She liked taking off and landing and looking at all the "pretty lights" on the ground. She also slept a little, so that was nice.

We landed at Newark at about 6 in the morning, meaning it was about 3 a.m. for us. My parents drove up to meet us, and we decided to split up to get back to their house. My mom and dad have a very nice house with a huge backyard, and Norah ran out into the yard soon after we got there. We weren't sure if she would ever want to leave! They took a nice long nap on Friday and got to bed somewhat early (it stays light much later in Pennsylvania than Arizona, so it was tough getting them to bed at their usual time), and on Saturday we woke up ready to go!

On Saturday a friend of mine put together an informal high school reunion at Valley Forge, so we drove out there and I saw a bunch of people I hadn't seen in years, which was quite nice. Norah went nuts over all the wide open spaces and the grass - she loved it! There were lots of toys for her to play with, and lots of kids for her to play with, and she had a grand time. It took her a little time to get comfortable, but then she was fine. Almost all of the kids there were boys, but even though Norah thinks boys are "silly and loud," she sucked it up and played with them. We let her run all over the place, and occasionally we saw her getting into some trouble (she poured soap from a bubble-making toy on her legs, which was kind of annoying), but for the most part she was fine. Mia had a very nice day, too, even though she obviously couldn't run around. A friend of mine brought a blanket for her baby, and Mia sat on it for a while and played with the toys there. Later she sat with Krys on a different blanket and hung out. She was also very enthusiastic about saying hello to everyone, as she usually is. It was a very good day.

Sunday was Norah's third birthday, and my mom had planned a huge party for her. My sister and her family drove up from Virginia, and a bunch of friends and relatives came by, many with kids of their own. I found it interesting that my and Krys's friends are all around the same age, but they all have kids the same age. None of them have teenagers, which, conceivably, they could. Everyone waited until they were in their thirties to spawn, which I thought was ... well, it wasn't weird, but it was something. Once again, most of the kids at the party were boys, but Norah, again, didn't care. There were more girls there, and one of my sister's kids is a girl, so Norah was a bit more comfortable, I think. Mia loved sitting with various people and chatting with them, while Norah and the other kids tore around the back yard having a grand old time. Both of them got a bit tired later in the afternoon and took brief naps, and Norah's sleepiness made the candle-lighting on the cake a bit traumatic. I wasn't around to see it (I think I was getting Mia up from her brief nap), but apparently Norah was upset that the cake was "hot." Once we took the candles out and it "cooled" down, she was happy to eat it, but the candles didn't make her happy.

I was kind of hoping she wouldn't get a lot of presents, because she doesn't need more stuff. I also didn't want people who had never met her or hadn't seen her in years to feel forced to get her something. It wasn't like this was a typical birthday party; many people had never met Mia, either, and it had been a long time since both me and my sister had been at my parents' house together. But people brought presents anyway, and many of them brought things for Mia, too, so that was very nice. Norah got a lot of cool stuff - a bunch of clothing, a lot of books, and some nifty toys. She seemed very happy with a lot of it, and we managed to pack it all up and get it all home, which also worried me a bit. We were all very happy the way the day turned out - even my mom, who was worried because the forecast was for rain. It didn't rain (although it was kind of muggy), so all was well!

Most of the rest of the time we spent in PA was quiet. On Wednesday we drove up to New Hope, which is a nifty little town on the Delaware River, and took a ride on the New Hope Railroad, which is an olde-tyme train that cruises around the countryside. It was a bit tough getting Mia's wheelchair onto the train, but luckily it folds up, so once we got Mia out and onto a seat, it was easy to store. Mia sat by the window for a while, and she did a very good job. The train has no seatbelts and no individual seats (they're benches), so Mia had a tough time sitting up, but she never fell over. I only had to help her a little bit, so that was neat. She liked looking out of the window at the scenery, which is very nice. Lots of trees and streams and nifty houses and such. Norah, meanwhile, sat next to me for a while, but then decided she wanted to hang out with Grandma. So she went across the aisle and sat next to my mother. It was a very nice day, because it wasn't too hot, so the fact that the train is not air-conditioned wasn't a big deal. The breezes were very refreshing and I think the kids, especially Mia, really enjoyed themselves.

My sister stayed up for the week after the party, so Norah and Mia got to know their cousins better. They hadn't seen them in a few years, and I doubt if they remembered them very well. My nephew turned 6 in January, and my niece is turning 4 in a few weeks, so they're contemporaries. They're a bit more rambunctious than our kids, mainly because my nephew sets the example for my niece, whereas Norah is, in many ways, an only child. Mia doesn't do anything particularly bad, so Norah doesn't have a model. My sister's kids are pretty good kids, but they're a bit more wild than ours. My sister tells me that when Norah goes to school she'll pick up some bad habits, and that's one of the reasons why I dread her going to school. Oh well - I'll take my chances. My nephew and niece were very jazzed to play with Norah (they liked talking to Mia, but she's a bit difficult to deal with, even for adults, so they had some issues), and Norah dug some of the toys they had. We're seeing them again at Christmas, which will be nice because Norah will probably remember them.

The kids had a good week, and two things were rather strange. They slept in quite late in the morning, occasionally until after 8 a.m. We could attribute some of this to the fact that Pennsylvania is three hours ahead of Arizona, so they were really waking up at 5, but after a day or so, that shouldn't apply, should it? They weren't going to bed too much later than usual, either. The minute they got home, last Friday (the 27th), Norah was up at 6, despite sleeping fitfully on the plane and not getting into her own bed until after 1. So it wasn't that they were more tired. They slept together in the same room, which I thought might be problematic, but wasn't. The room had a less opaque shade on the window, so early in the morning, it got really light in there. Yet they slept on. At home here they have those blinds that don't allow any light in. Maybe it's too dark in there! The other thing that was strange was how well Mia ate. As long-time readers (the blog does have a few, I swear!) will recall that our battle with Mia over eating is ongoing and nerve-shredding to all! But at my parents' house she ate with gusto! She scarfed down pasta salad, London broil, macaroni and cheese, and anything else we felt like putting in front of her. The salad and mac 'n' cheese wasn't too surprising, as she had eaten that in the past (not with such alacrity, but still), but the fact that she sucked down the meat was strange. I guess we'll have to get her some soon! Knowing Mia, of course, she won't eat it. And so the battle will continue! But we were happy with her eating, at least for a week.

On Thursday we flew out of Newark. Our flight was scheduled for 8.15, but the last time a plane left Newark at its scheduled time was probably back in the 1930s, when it had one runway and there was one plane in all of New Jersey. When we arrived, it had already been pushed back to 8.50. The kids were perfectly fine as we waited - I'm never surprised by how patient Mia is, but I'm still a bit stunned by how patient Norah is - and we finally boarded. We were first on again, but they were trying to get everyone seated, so we didn't have as much time to set up Norah's car seat. But we got everything squared away, and then we sat. And sat. And sat some more! We were in line to take off, so we waited. Finally, about 10 p.m., we took off. Mia fell asleep soon after takeoff and slept pretty much the whole way home. It was great for her, but considering that her head was on my lap, it was kind of a pain for me, as I couldn't really move too much. Norah fidgeted in her seat for a while, but then slept as well. She woke up soon before landing, which was nice because she got to look out the window as we touched down. And so ended our vacation!

We had a really nice time, and it made me pine even more to move closer to the family. My parents love spending time with the grandchildren, and it was great for them to play with their cousins. Of course, given the housing and job market, it's probably not going to happen any time soon, and given the cost of flying, we're probably not going back there in the near future, but we can dream, can't we? I'm just glad we went, and I hope it won't be too long before we can wrangle up some dough to fly back for another visit.

Wednesday, June 18, 2008

The saga of Mia's wayward wheelchair

Mia got her new wheelchair yesterday. It was the 17th of June. I ordered the wheelchair early in March. I did not use insurance. So why, oh why did it take over three months for Mia's wheelchair to arrive?

Well, here's the story. When I ordered it, I simply used Mia's money so we would get it sooner than if we went through insurance. I cost a pretty penny, too, but she had a good amount of money in her account, so I figured it wouldn't be an issue. Her annual accounting review was coming up soon, too, so I figured that would help if her money ran low.

Originally, the vendor said it would arrive in the last week of March. That meant we had to wait three weeks or so. Okay, I could deal with that. We bought a new wheelchair not necessarily because Mia had outgrown hers (she was getting there, but she probably could have lasted six more months or so), but because it was getting a bit small AND she had beaten it up. One of the brakes had broken off long before, but that didn't matter too much as long as we had the other one. Around January or so she broke the footplate off, as she often kicked it. This caused problems because her feet just hung there and she had no stability. Mia also likes rocking back and forth in the chair, and it didn't have a lot of support in the trunk, so she was often slumping. The new chair was a different brand with a more comfortable seat and a bit wider base. So we thought it would be a nicer chair for her.

The last week of March passed and the chair did not arrive. I gave it a few weeks, figuring they might have misjudged the date. Into April, I called the vendor. After a while they got back to me and told me that the chair was so popular that they had no more and needed to get them from the manufacturer ... in Italy. What is funny about it is that after it was late the first time, I was telling people that they apparently had to carve the new chair out of fine Italian marble. Little did I know how right I was!

The vendor couldn't tell me when the chair would arrive, because they couldn't simply fly one to us, as it would have been too cost-prohibitive. They had to wait until the could fill a cargo container and ship it. So I waited. In the meantime, Mia ran out of money. We would have been fine without the charge of the wheelchair, but with that and her other bills, her account drained quickly. The vendor originally offered to reimburse us until we actually had the chair, but I figured that Mia would have plenty of money until her annual accounting review, after which she gets more money for the year. Well, the courts being what they are, that was a foolish hope, but I thought the bills wouldn't pile up that quickly. So I e-mailed the vendor and asked if they could reimburse us, and they very nicely did so. I figured with the length of time we were waiting, it would behoove us to have our money temporarily while Mia's lawyer worked on getting her more.

The days stretched into May, and we waited. I hoped to get it by the end of the school year, but that didn't happen. I called occasionally, but they had no new information. Finally, a few weeks ago, I started calling every day. We're going on vacation to Pennsylvania tomorrow, and I didn't want to go with her old, beat-up chair. I needed to know when it was getting here! Her horse therapist had a chair that had been donated that still had a footplate and was reclined a bit, and she let us use that one, which was very nice of her. But we still wanted the one we ordered, naturally. Finally they let me know that the manufacturer said it would be in the country the second week of June. I called them and asked if that meant it would get here by the 19th of June - it didn't do me a lot of good if "in the country" meant 3000 miles away. The woman at the company said that once it reached the country, it would only take 3-4 days to reach me. Finally, last week, I got an e-mail saying it would arrive on Tuesday. Lo and behold, it arrived!

Of course, we were worried that it might be missing some crucial component. Mia's PT came over last night to assemble it, because I was terrified of screwing it up. It was fairly easy to put together, though, and nothing was missing, so we got it all done and everyone was happy. It both reclines and tilts, which is nice, and the footplate has straps to keep her feet down. She likes to kick out her legs when she's sitting, which forces her butt forward and screws up her sitting position. With her legs strapped down, she can't kick them, and with the recline on the seat, this will help her sit up. It doesn't have a lot of lateral trunk support, but the arms on the chair should help, and the waist strap is attached to the shoulder straps, so we need to use them both at the same time. On her old chair, they were separate, so we often didn't use the shoulder straps because we wanted her to learn to sit upright. This gives her more supports, which is nice, but at the same time, it takes some responsibility for sitting up away from her. We can also take the seat off of the base, and you can fold it up either with the seat on or off, so that's handy for when we fly. We're going to take the seat off, fold up the base, fold up the seat, and take up less space. That should work well.

We're very happy with her new chair. It's sturdier than her old one, and it's a nice smooth ride. Her teacher was already raving about it today, and I think Mia likes it. Of course, Mia's often agreeable, so who knows. I'm just glad it arrived before our trip, because that would have pissed me off.

So: 3+ months to get her chair. Man, I'm glad we didn't use insurance. We'd probably still be waiting for approval. But it's here now, and life is good. Let's hope it lasts even longer than her last one (which served us well for three years, after all).

Friday, June 13, 2008

Mia's strange week at school

Mia started summer school and after-school camp this week, because it's so hard to figure out what to do with her and we didn't want her to lose any of the gains she made in school this year. Like every year, the sessions are three weeks long, and there are two of them. She's going to miss a full week (the 23rd-26th) because of vacation, but she'll still get five weeks of work in. That's fine with us!

I had forgotten to sign her up for the bus until last week, because the previous two years I simply drove her. As the camp is somewhat further away and she'd be getting out right in the middle of Norah's nap time, I wanted to get her on the bus. Also, there's no reason for her not to take the bus - she's fine with it, and it's more convenient for me, after all. So last Friday I called and asked if we could get her on the bus even though it was a bit late to be worrying about that. The woman I spoke to said that was fine, and she got Mia on a route. Then she told me how much it cost. Mia isn't covered by ESY (Extended School Year) or DDD, the state agency that gives financial assistance to special needs kids, so I was paying the whole cost. It's twice as much to bus her to school as it is to teach her once she's there. Yes, twice as much. I almost dropped the phone. I actually asked the woman if she was kidding. I mean, with gas prices the way they are, it's probably cheaper to bus her, but still - why is it double the cost to get her to school than to teach her once she's there? Beats me. Those bus drivers must have a good union.

So that was fun. Then on Monday morning we stood outside waiting for the bus. It was supposed to arrive at ten minutes after eight, but it got to be 8.20 and no bus was to be seen. I figured that the first day of school might be a bit confused, but I also wondered if they didn't get the route to the driver and Mia wasn't getting picked up. I called the transportation office, and as they were checking on it, the bus pulled up at about 8.25. So that was fine, but then the driver couldn't get the lift down. It was broken, and although I briefly considered trying to get Mia's wheelchair on through the front door, I decided against that. She said we'd have to wait for a new bus or a mechanic, but I told her I would just drive her, as the school isn't that far away. As long as they could get her to camp and home after that, it would be fine. So I drove Mia to school.

Monday is swimming day at camp, apparently. We sent her bathing suit to school with her, but when she got home that day, she was wearing her back-up clothing and her separate bag containing her bathing suit wasn't with her. When we went into her backpack, we found her original clothes, and they were soaked. What the heck? It was obvious that she had been in the pool with her clothes on, but why? There was no note accompanying her backpack, so we had no idea. I called the camp on Tuesday and asked what was up, and the woman said she'd call me back once she got to the bottom of it. We weren't angry, because Mia was fine, but we were puzzled. The woman didn't get back to me on Tuesday, but in the afternoon, Mia's bag came home with the bathing suit in it, completely dry. So that clinched how she went in the pool, but not why. On Wednesday the woman called me back and said that after lunch (which she eats at camp) her bag got separated from her, so when it came time to swim, they didn't know that she had a bathing suit with her. They were going to keep her out of the pool, but Mia was so excited about going in (she LOVES swimming) that they sent her in with her clothes on. That's fine, but why no note? Would it have been that difficult?

So that was her week in school/camp. She really likes it, and although we don't expect much from the school, we just hope they can keep up with her writing and identifying letters and numbers. We want her to hit the ground running at school in August, and this should help. And I get to hang out exclusively with Norah, which makes her happy, as she was jealous the past two weeks when Mia was out of school. She wants all the attention!!!!

Sunday, June 08, 2008

Things the kids love

I try to keep Mia and Norah from watching too much television, but they still like it a lot. When they watch stuff for kids, it's on DVD, so they don't realize there are television stations where the cartoons NEVER END! I'm sure they'll figure it out soon enough, but why make it easy for them? They do, however, watch a lot of ESPN, simply because I do. I figure watching sports can't be too bad for them, right?

Well, they've come to adore two different commercials. They're good consumers, man! Mia, especially, loves this Chase credit card commercial:

She loves it because of the Queen song, which I sing to her. She now says "I want it NOW!" when I ask her when she wants something. It's very cute. And that song ROCKS!
(This is the actual video, in case you're wondering. It's awesome.)

Norah, on the other hand, loves this commercial:

In case you don't want to watch these videos, this is a commercial for (the dude is even on the web site!), and Norah loves that I sing along with it (I've seen it so often that I know the words). It plays a lot in the morning when I have Magnum, P. I. on (I guess people who are home at 10 a.m., which is when the show airs on the East Coast, are out of work and having problems with their credit), so Norah hears it often. It's a fun little song, and Norah likes saying "Free credit report dot com" in her cute voice. She might be enslaved by the television, but at least she's adorable in her enslavement!

Yes, I'm rotting the minds of my children. But how can you resist the way in which I do it????

Tuesday, June 03, 2008

Mia's behavioral problems

The hardest thing to deal with when it comes to Mia is not her disabilities per se, but her behavioral problems. Now, I don't mean that she behaves poorly, because she's a very sweet girl who's always in a good mood (that's part of the problem). But she still has some issues.

It's a strange thing, because it's somewhat easy to adapt to her larger issues. I mean, we've accepted that she can't walk and needs to work hard on that. We've accepted that she can't speak very well and needs to work hard on that. We're not happy about it, but her disability has become part of our lives, and we just move on. People often express wonderment that we can deal with it, but as I've said before, what else are we going to do? She's our child, after all. You shift your priorities and your expectations, and you do the best you can. Her situation depresses me on occasion, but she continues to make progress, so I try not to let it bother me.

Her behavior, however, is something else. What people with non-disabled children fail to realize is how pervasive the issue can be. It's not just the actual disability, but everything about her life that's affected, including how she acts. As she gets older, we think she's trying to assert her independence more, and unlike Norah, who asserts her independence in fairly typical ways, Mia does different things. As she is immobile, it's easier to keep track of her (she doesn't wander off and open drawers she shouldn't, like Norah does), but she doesn't learn as well. When she misbehaves, it's much harder to get her to stop and understand what she's doing. Obviously, all kids like to push the envelope, but Norah understands much better when she's doing something wrong and how to stop. It's true that we have to tell her certain things over and over (as with all children), but when she misbehaves, we can usually understand why she's doing it, and we are able to deal with it. I think we're pretty consistent with telling her what she can and can't do, and she's starting to learn how she should be behave. She doesn't always do it, of course, but at least she understands why we punish her and what we expect of her.

Mia is different. When she misbehaves, mostly through poking or otherwise hitting you when you're sitting near her, she simply doesn't listen when you tell her to stop. She will tell you that hands are not for hitting, but then she'll go right back to hitting. She doesn't hit that hard, and it's not because she's angry, but because you might not be paying attention to her and she wants you to. She wants attention all the time, too, so she'll spill her cereal in the morning deliberately just so I look at her. She knows what she's doing it wrong, but it's as if she can't stop herself. We're not sure how to get her to behave correctly other than telling her over and over, but even more than with Norah, because it takes so long to sink in. We know she can learn, because we've managed to get her to eat dinner when she doesn't want the food by reading to her, and when she stops eating, we stop reading. She has learned that she needs to take a bite if she wants to be read to. So that's working, slowly, and we have to start phasing out the reading, but who knows when that will happen. Another problem is that she laughs at you if you raise your voice to her, because she thinks it's a game. It's hard to make her understand the necessity of behaving because in order to make a point, you have to yell, and then she tunes you out. If you just raise your voice a little, it's not enough, but if you raise your voice too much, she stops listening. It's frustrating.

For the most part, she's very well behaved. She doesn't hit Norah too often, and when she does, it's mainly because Norah is getting in her face. They get along very well otherwise, and we're hoping, as with a lot of things, that Norah models for Mia and Mia learns something that way. Mia doesn't behave poorly that often, but when she does, it's far more frustrating than you might expect, because of this problem. I know it's tied into her injury, and that makes it even more frustrating, because I don't want to get angry at her for something she can't control. So we keep working on it. Just like the other aspects of her life, it takes a lot. She's totally worth the effort, of course, but it's still tiring.