The Daughter Chronicles

Saturday, October 29, 2005

Mia lost her music therapist

Well, she didn't exactly lose her. I mean, her music therapist called me on Thursday, so I assume someone knows where she is. However, the reason her music therapist called was to say that the clinic where she works let her go and she wouldn't be able to provide therapy for her in the foreseeable future. The clinic itself is cutting out music therapy all together - I'm sure it's because the state needs that money to build a big fence along the border to keep all the scary southerners out.

This is a bummer for a couple of reasons. First, Mia likes music therapy. No, it's not as crucial as physical, occupational, and speech therapy, but it complements them very nicely and it's fun. Second, she likes the therapist. I told the therapist that even if the clinic still offered music therapy, I would want to stick with her, because she forms bonds with all her therapists, and even though she moves on relatively quickly when she gets a new one (she's on her third OT), there is still a period of adjustment.

I told her therapist to give us a call if she hooked up with another clinic or decided to offer private therapy. I hope she does. I often tell her therapists that if we could afford it and they had the time, I would hire them to work with Mia every day for eight hours. She's still getting plenty of therapy, but I hope she can get music therapy back. It's just another small thing that gets cut out because of bureaucracy. Don't get me started.

Monday, October 24, 2005

Mia Is On the Move! Otherwise Known As "Here Comes Trouble"

Greg had to attend traffic school on Saturday, so the kiddies were all mine for the day! It was actually a very good day. The kids were both well behaved, and we all had fun (well, except for Greg).

After breakfast, I was trying to get both kids & myself ready to go out. As usual, the tough thing is finding something to do with Mia. Usually, we put her in an umbrella stroller and wheel her around the house with us. She, naturally, gets bored with this. I decided to try something new.

After getting Mia dressed and ready, I wheeled her gait trainer into the bedroom with me & put her in it. I put Norah into her bouncy seat close enough to watch her big sister, but not so close as to be in harms way. I told Mia to go ahead and walk around and entertain herself while Mommy put on her makeup & got dressed.

Surprisingly, instead of rocking or whining, she began to cruise around the room. There isn't a lot of room (the gait trainer is very wide, so maneuvering it around without running into things is tough), but Mia managed to walk over to the door leading into the back yard & look out. Once she got there, I turned her around and she began to walk slowly back toward the bathroom.

Things then got a bit quiet, so I popped my head out of the bathroom to see what was happening. Mia had discovered the laundry basket filled with clean, folded clothes. She was having a grand time pulling my clean panties from the basket and throwing them around the room. After stopping her several times, I finally wised up and moved the basket out of her reach. After that, she began eyeing the perfume bottles, knicknacks, and other breakables on the dresser with interest. Fortunately for me, it was time to go!

After I was finished dressing, I picked up Norah, told Mia "C'mon, let's go put Norah in her car seat!". I pulled the gait trainer through the doorway to get her started, and left the room. Mia followed me, and I helped her turn the corner. She then followed me all the way down the hallway. I only had to move her once (when she discovered a large, framed Matisse print on the wall, and was trying to pull it down). Once I helped maneuver her out of the hallway, I told her to "Come with Mommy" again, and she followed me into the family room. Once I had Norah strapped into her car seat, I turned the gait trainer around and told Mia to follow me again. She followed me to the entry way and waited for me until I put Norah into the van.

It was fabulous seeing her just cruising around. I think if we keep just putting her in there and letting her see that this is an every day thing, not just something for therapy time or TV time, she will see it less as "work" and more as just how she is supposed to get around.

The best part happened Sunday. I put her in the gait trainer again, while I got ready to go out. This time, Mia discovered the dresser drawers. I got a couple of pictures of her opening the dresser drawers, pulling out my clothes, and gleefully flinging them around the room. This type of behavior might piss off the parents of a normal kid, but it was so wonderful to see her getting into everything just like any other kid, I just laughed at her antics and took pictures (we'll post them when developed). This will probably just encourage her to pillage our stuff more often, but I guess we're making up for lost time here.

Sunday, October 23, 2005

I may go deaf

I haven't had good hearing in years. Probably all those concerts I went to when I was lad. Simply Red ROX, man! Anyway, for those of you who don't have kids, I can offer some sage wisdom for when you do: say goodbye to your hearing, because you won't be having it for much longer.

Mia screams. It's very weird. She's perfectly happy, but she screams. Very loudly, I might add. Ear-piercingly so. She screams when she wakes up in the morning. She screams when she is in her gait trainer. She screams in the car. Today was ridiculous, because once again she decided not to sleep (a Sunday tradition) and she simply lay in bed, shrieking like some sort of creature that roams lonely moors in Ireland warning people of their deaths. Whenever you approach her while she is screaming, she will smile her beautiful smile at you and promptly scream some more. She will sit on my lap when she wakes up from her nap during the week and, after she wakes up a bit, will start screaming. It's disconcerting.

I don't like her screaming. It's annoying. It's bizarre. It freaked Norah out for a while, but I think she's getting used to it. Most of all, it gives me that low buzz in my ears that I used to get the morning after I went to a rock concert (Wham! rules!). I'm turning into Pete Townshend, and I don't like it. My daughter is deafening me. And she loves it.

I've been trying to get Krys to post more often here, I promise. She has fun stuff to say about Mia that I may have to write about, because she's off making money for the family. I know, she's selfish. Anyway, if I can't convince her to write about it soon, I may have to. Krys is like that - always thinking about herself. The nerve.

Tuesday, October 18, 2005

Why don't we check out some pictures?

Sure, why not? I mean, I'd like to think people come to this blog to read my deep insights on raising children, but I know most of you are all really here to check out the two cutest children in the world! As usual, I'm sorry to all of you out there with kids of your own, but you're all just competing for third place, because it's a tie for first!

First, we have Norah in her bouncy seat. She digs sitting up. Much more than lying down, actually. I think she likes looking around.
 
 Posted by Picasa
As I have mentioned before, we take pictures of the kids in the same chair every month on their "birthday." This is Norah on September 22, her three-month "birthday."
 
 Posted by Picasa
We have been trying to get Mia to hang out with Norah and be nice to her. Norah, so far, idolizes Mia - she gazes up at her all the time when Mia is eating and Norah is hanging out in her chair. So one day we put Norah in bed with Mia and told them to play nice. Mia was very well behaved.
 
 Posted by Picasa
She even gave Norah a kiss!
 
 Posted by Picasa
A while back we moved Norah to her crib. She likes it. She has started going into it while she's still awake and she falls asleep in it, which is a pretty big step.
 
 Posted by Picasa
I like this close-up, because it seems whenever I get close enough to take a nice picture of her, it gets fuzzy. This came out really well, and Norah was in a good mood.
 
 Posted by Picasa

Okay, so I didn't take as many pictures of Mia as I usually do. We felt bad, since we thought we were not taking enough pictures of Norah (the whole second kid syndrome), so on this roll we focused on Norah. I have already taken some good pictures of Mia with the new roll, so next time the balance will be restored!

I hope y'all like the pictures. Don't feel bad that we have the cutest kids in the universe - someone has to!

Wednesday, October 12, 2005

Awww ... How cute!

We took Norah to one of those olde-timey type photo places and got her picture taken. Isn't she cute?
 

Okay, I lied. This is my father-in-law, circa 1947. Doesn't he look like Norah? Of course, the fact that he's in a dress might help. My mother has a picture of me in a dress too, and that was in the early 1970s. Stupid christening dresses.

Anyway, I'm off to Pennsylvania for a few days, so even though I don't update here that often, it might actually be longer than usual. I will try to get Krys to add some of her thoughts, since she is the mommy, but we'll see. She's staying here with the kids, but my mom is in town to give her a hand, so she might have some time. She has a lot to say about the children, but she doesn't have the time to rant about it!

In the meantime, if you're interested, here are some blogs I read devoted mostly to raising children. Parent blogs fascinate me.
Carolyn Castiglia's motherhood blog.
A picture blog of Annabelle, who is not very old.
Jon's blog. Very funny.
Stuntmother's blog. Also very funny.
Lisa's blog. Not always about her kids, but more often than not.
Cindy Lacey's blog. She needs to update more, consarnit!
Juri Peterson's blog.
Mr. Nice Guy's blog. No offense to the other blogs here, but this one makes me shoot milk out of my nose every time I read it, even when I'm not drinking milk!
Renee's blog.
Queen Wanydala's blog.

If anyone reading has any other suggestions for parenting blogs, let me know. I'm always interested in reading more! Posted by Picasa

Monday, October 10, 2005

Emotions

I don't know how other parents of special needs children feel, but the other day I was watching Mia in her gait trainer, and I thought: "I'm sad." I realized that I am sad most of the time.

Now, this is not depression. Nor is it crippling in a way that I can't function. Nor is it even the overriding emotion I feel. I can be happy, excited, angry - but behind it all is sadness. I can't get past it.

This is not self-pity, either. I know that Mia's injury affects Mia a lot more than it does me, and I should just get over it. She is happy most of the time, and although she can't do a lot, she works hard and tries and enjoys life and loves going to school and is fascinated by everything. Yes, she can't do a lot, but I don't think she realizes how disabled she is and how hard she has to work to be independent. She has a long way to go and we're still very confident that she will be a functional adult. The day-to-day activities are tough, but we're in this for the long haul, so we can be patient.

I'm still sad. It's not a good feeling. I take her to school and all the other kids are running around talking (not well, but still). She's in her wheelchair and says very little. I watch her struggling to sit up, and even though she has made a lot of progress in that area, she still has trouble. I hear her in the morning when she wakes up and think that she should be coming into our bedroom on her own and waking us up. All the little things that "normal" three-year-olds should do that she can't do. She doesn't really know any better, and like I said, she's trying, but whenever I look at her, I'm sad. I'm happy at the same time, because she was this close to dying, but I'm still sad.

It's a strange way to live, and I don't know if it's common. I go out sometimes when we can get a babysitter, Krys and I take turns taking the day off and I go out without the kids, I'm taking a short vacation this weekend, and I enjoy myself when I'm not with the kids (I love them, but they wear me out!), but always, in the back of mind, I'm thinking about Mia and how wonderful she is and how I wish she could enjoy life more. She wants to do so much, I can tell, and occasionally I think she realizes that she could be doing more and she struggles to get something or express something. I'm very happy that she is alive and her personality wasn't affected by the accident, but I'm still sad. I have a feeling it will be this way for the rest of my life. Bizarre.

Wednesday, October 05, 2005

The clench

I doubt if I will ever get used to all the things Mia does or does not do because of her brain injury. I have kind of made my peace with some of the things, but occasionally she does things that freak us out. Other things just bother us, but there's nothing we can do. One of the most annoying things she does is "the clench."

Mia sleeps really well, surprisingly enough for a three-year-old. It's partially, I think, because she's not terribly active, and we also give her anti-seizure medication, which makes her drowsy. However, whenever we put her in her bed, she does something weird. We put her on her left side, and give her a pacifier and put a teddy bear next to her. She immediately bends her head over her chest, pulls her legs up, and makes a weird noise. It's hard to describe - it's not quite a grunt, it's not a whine - Krys and I are sitting here trying to think of terms to use, and I said it's the sound someone would make when they're trying really hard to, you know, use the toilet, and Krys (who's not as vulgar as I am) described it as the sound you would make if you're clenching every muscle in your body. She bites down hard on her pacifier and clenches everything. She does this a few times, and if all is well, it passes and she goes to sleep. Sometimes this keeps her awake longer than normal, but usually she overcomes it. When Krys goes in to check on her at night, her head is often well off the pillow and she's almost in an "L" shape. It's very bizarre.

Her muscles are very tight with a lot of tone, a circumstance of her accident. Whenever she clenches at nap time, I try to straighten her out, but it's very difficult. We have a card of an osteopath that Mia's speech therapist gave to us, and that's our next move. We have thought about a chiropractor, and that may be in the future.

It's a very weird and troubling thing. We have no idea if it's connected to her brain injury or not. I can't imagine that it's not, but we can't figure it out. The only good thing is that it's not affecting her sleep and it doesn't seem to bother her. Still, it's freaky.

Tuesday, October 04, 2005

Norah and Zoe

We have had our cat, Zoe, for about eight years. We have had our other cat, Smokey, for about six. When Mia was born, many people told us we had to get rid of the cats. The reasons ranged from "allergies" to "the cat will fall asleep on the baby's head" to "the cat will be entranced by the baby's pulse in her neck and will attack it!" (that's my favorite; it comes from Krys's grandmother, who is the very definition of an old wife). We said we would keep our cats, thank you very much, and just make sure to watch the kid around them. Smokey is very easy-going, and allows Mia to pet him and even tug on his tail (although whenever she does that, we're quick to stop her), but Zoe is a different matter. Zoe is high-strung and weirdly affectionate, in that she likes to come up to you, rub your leg (she's doing it as I type this!), and sit next to you and allow you to pet her (she is, after all, the Queen). If you pet her too long (and no one knows exactly how "too long" is, because it's based on her fancy - the Queen, remember?), however, she grabs you with her claws or bites you. The bites aren't bad - they're more like nips - but the claws are nasty and can give you some nice scratches. So we have, more or less, kept Mia and her wildly grasping hands away from Zoe, and for her part, Zoe has pretty much stayed away from the crazy thing who is always flailing at her. Zoe did claw Mia once, but recently, all has been well.

Now there's Norah, and we have to go through the whole thing again. Unfortunately, Zoe seems more affectionate than usual over the past few months. We're sure it's because there are now TWO crying things to vie for attention from the humans, so she's trying to get her share. This makes it more difficult to keep her away from Norah, however, because she always seems to be lurking.

Zoe's latest thing is to jump up on the arm of the chair I sit in and lie down. She then does a half-roll so that she is rubbing against my arm. This is very cute and I pet her when I don't have a kid, but these days, one kid or another is my usual accessory, so then I ignore her. She also likes to check things out when Krys is sitting on the sofa with one kid or another. So a few days ago Krys was sitting with Norah on the sofa, and Zoe got on her back legs and peered up at them from the floor. Without warning, she reached out and swatted Norah, breaking skin and drawing blood. It's unusual for her to do something like that if people are ignoring her, but that day she was just pissy, I guess. Norah, unsurprisingly, freaked out. Krys had to put a band-aid on her. The next day I was holding Norah in my chair, and Zoe was on the arm. She appeared to be cat-napping, but when I moved Norah onto my knee to chat with her (she likes chatting), Zoe took another swipe at her. This was less severe, and I was able to keep Norah from crying (she got "the pout" look on her face, but I smiled and laughed and bounced her a bit, and she quickly recovered). We're trying to keep Zoe away from Norah, but she's getting more brazen.

We have no plans to get rid of Zoe, but we have told her many times that she really shouldn't make us choose between the kids and her. Yes, whenever the roving band of gypsies comes through town we think about selling one or both of the kids to them, but it's more of a wistful desire. So now we have to be doubly diligent and kick Zoe off the arm of the chair if we sit down with a kid, or push her off the sofa, or just generally be pains in the butt with her. Soon Norah will be able to grab Zoe, and then the fun will really begin. We don't have two kids, we have four. And they're all terribly immature.