Oh yeah, she's disabled.

You know how, sometimes you've been trucking along for a while almost forgetting that your child has a disability, and then WHAMMOOOO - it slaps you hard across the face to remind you that, oh yeah, it's still there - never left?

That's where we are this week. And I'm really not doing okay with it. Neither is K

I know it's going to be okay - it just feels really rough right now. VeeGee's therapists confirmed her need for AFOs yesterday (I know that's not really a big deal) and today with her OT was just WAY emotional. They think she needs to also be seeing a psychologist to help her deal with some of the abuse/neglect issues that caused her to be taken from her birthmom and that are exacerbating her already pretty severe SPD. I'm just so so so sad for her. And freakin' pissed at her birthmom/grandfather.

And tonight I have to get up in front of a bunch of people to read from my book that I don't even care about any more. I'm having DH introduce me at the event and we're both just kind of shell-shocked so we have no reserve of humor/wit/savoir faire to bring to this tonight. And, VeeGee, of course, be in the audience yelling at me, I'm sure.

I'm sorry to whine.


Oh, and we've totally nixed the feeding stuff. . . . . .

The Menagerie Family

VeeGee doesn't name her stuffed animals (and doesn't like dolls for some reason). She has a lineup that goes everywhere with us () that includes Charlie (a tiny white and black dog that I named), "Brown Monkey" (who is white), "Other Brown Monkey" (who is brown), "Elephant," and "Mahma Bear" (panda bear). In this little family "Charlie" is the baby, "Mahma Bear" is daddy (because they're both black and white, I assume, and K and VeeGee are basically carbon copies of each other), and "Other Brown Monkey" is mommy. : They're always hugging each other and saying, "I miss you so much!"



off to swing from the branches now . . . . . . .

Why I Don't Use Time Outs

I don't use them for a few reasons.

First off, my daughter is an only child - always will be, so I don't see the point of sending her off to be by herself (especially characterizing that as a punishment or consequence or however we want to call it). She's by herself too much already, I'm afraid.

Also, I think it kind of works in the reverse. Her "bad" behavior is usually in response to a request or instruction from me. I don't want to give her an "out" of whatever it is that we need to be doing at the moment. As in real life - we just, sometimes, have to power through.

And that leads to the next reason: time-outs aren't "natural consequences." I know some people think that yelling at a friend will end up making that friend go away and so the separation of time-out mimics that consequence - I don't think my dd could make that connection, and I don't think that's really how it works in real life. What happens, I think, is that things escalate because people don't know how to harness their emotions or control their impulses or whatever. That's what I want to help my daughter learn to do, so, staying inside of the situation gives me a better teaching opportunity. Sure, it can be hard on my ears/emotions/headache/whatever, but I do think that it's a much more productive way of parenting.

All that said, I do ask my daughter sometimes if she needs some rest when she's behaving in a way that's not appropriate (and I reluctantly use that word, because I think "bad" behavior is appropriate as children learn to navigate the world - I don't think we should encourage it, of course, but I do think it's developmentally appropriate). Sometimes she does need a few minutes alone, talking to her animals (her toys).

Uphill Battle

Last night wasn't so great. I think she was too tired and over stimulated - we'd been at the funeral home for a visitation for K's uncle and VeeGee was in rare form (head-butting form, to be specific ). The meal when we got home consisted of more persuasion than we'd been having to do, but we pushed on through. It actually got better toward the end, but she was not very happy.

This morning started out rough too, but she rallied and finished her six bites without protest.

It feels like two steps forward three back and so on, but I am still convinced that we're doing the right thing. When I told her OT what we were doing, she was visibly relieved (I think they think she's kind of spoiled at her therapy clinic and this is the replacement OT for the one I fired for putting VeeGee timeout during a session ). She also likes the idea of not letting her wipe her face off with a napkin during the session. I'm back and forth on that one. I know I'd be stressed with apple dripping off my chin!

The OT also suggested ramping up in other sensory areas so that this isn't such a blip on the screen during the day (does that make sense?). We're brushing more, join-compressing more, etc. etc. It feels as if VeeGee is really in a growing spurt, and I hope that all of this will help her cope.

I'm letting her wipe some. But I am waiting until she asks for it - so that it might increase her body-awareness (which is a HUGE issue for her). It's rather pitiful because she wants to wipe with the back of her hand, but then freaks because there's stuff on her hand. I feel for her - I'm pretty freaked by this stuff too.

But that's the thing: it's about letting her integrate these sensory experiences, about helping her process them in a way that will allow her to more productively navigate her world. There are things that, because of my own sensory issues, I simply cannot do, that are WAY TOO STRESSFUL for me because of my inability to handle certain sensations. I really don't want that for her and I hope that I'm able to help her overcome it, to the extent that she can.

Catch Phrase

VeeGee has been saying "oh mo mo may" forever. I never knew what it meant until the other day when I was watching Diego with her. Turns out she was saying "Ayúdame" - which means "Help Me."

Great! I've been ignoring her pleas for help all this time!

Onward

I wanted to mention (at the risk of sounding defensive), that this isn't sudden. We've been working toward this for a long long time now. Also, she used to eat a tiny bit. We discontinued that once she came to us, under doctors' advice, because of the severity of both her aspiration and GERD, which caused her to throw up every single time.

We just believe, along with her therapists, ENT, GI, and Ped, that she is ready cognitively as well as anatomically, to ramp it up a bit. I most definitely will not force anything - but in this short time she has gone from shaking an crying to just opening her mouth and swallowing. It's pretty amazing, and I have to keep reminding myself that it has been appropriate to NOT do this before now. I actually am feeling more guilty about not pushing her previously than I am about pushing her now.

She has always mimicked eating, tried to feed us, wanted to sit at the table. We just haven't made any issue of her food avoidance. It's not that I think I was wrong to have been "easy" on her, I can't help but wonder if, as soon as we got the go ahead (which was months ago), we'd be so much further along.

So, it's kind of funny (though I totally understand where y'all are coming from!!!!!) that this has kind of come off as if I'm pushing too hard - because my greatest concern was that I hadn't pushed hard enough.

Five Bites

I'm getting excited. We're up to five bites with NO GAGGING - just a little persuasion. And by persuasion I mean - "Open your mouth, please." That's it, seriously!!!!!!!!!!!!!!! K and I have been stopping people on the street to tell them!!!!!!!!!!! We've tried bananas and now pears. Seems like the pears were a bit better. Next I'm going to try peas (blech, but it's not sweet, so I figured we'd see if that is better/worse).

Feeding The No!

It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, VeeGee has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

So, here's the good news! After only four of these "meals" - three bites each - she opened her mouth all the way without any extended point-counterpoint. And swallowed!!!! Yep, I said it, swallowed (that is something I cannot force, no matter what!!!!) So, two meals running @ 4 bites each, she's done that. And then off to Dora . . . .

I think this issue, for me, is about listening and watching VeeGee to determine for her, when she can't for herself, when it's time to move to the next step. I have to do this in every area of her life. I'm pretty excited about this decision because it is such a huge thing for her. She hates hates hates hates the tube - wails and cries when it's time for it. I don't think that a bit of coercion in the direction away from it can be a bad thing.

It's tough knowing the best thing, isn't it? And, who knows, this might not last. I just felt like I'd be doing her a disservice to not try. It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, she has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

Grace has a pretty bad cold this morning, so we're going to go easy with this - but still press on. I think consistency is going to be key (it always is, right?!).

Eliminating the NO option in feeding

VeeGee's feeding therapy is just going NOWHERE, not one inch closer to anything actually going in her mouth. So, I decided a couple of days ago, "no more fun and games." What I mean is that the feeding therapy that we've done is very play based (which, of course, suits my parenting inclinations quite nicely), but it's not working. At. All.

For the past three days I've been "forcing" her to eat three bites of pureed food (apple/banana). It goes like this: "Look, you've got some food to eat! I'd like for you to eat three bites, and then you can go watch Dora. Do you want to put it in your mouth, or do you want mommy to help you?" "NO!!!" (covers mouth with hands, turns away, pushes bowl away). I ask a few times, then say, "Okay, mommy will help you." Usually I've been able to get her to kind of open her mouth for me to put it in, and when I say kind of, I mean, I actually really have to sneak it in. She's swallowed about three or four times, the rest, she's just spit it out.

This morning, though, she, on the third bite, actually opened her mouth on her own. Her eyes were squinting and she was shuddering, but it was open. And she swallowed. I was so excited.

So here's the worry part: I do not want to create an issue where she is afraid of food, or that she feels forced or whatever. But the fact of the matter is that she is going to have to learn this at some point, right? I mean, I can't just let her keep ignoring all of the "gentle" "therapeutic" ways of cajoling her. I actually really think she's too ornery for that.

Blank Screen Blues

Yep, got em.


It just drives me crazy.



So, I'm not teaching this semester and it's kind of weird. I'm glad in one sense - especially since it looks like the fascists have taken over the FYComp curriculum! - but I really am going to miss it. I just didn't get my shit together in time to commit to teaching and by the time I decided I did, in fact, want to, it was too late. Not to mention the fact that I royally pissed off the very nice woman who coordinates the comp teachers. I feel bad about it.

But, on the other hand, I'm looking forward to a semester that's pretty open in terms of actual commitment. I mean, THE Commitment (aka thesis) is still there, looming over me and my "Blank Screen Blues" like a drooling, snotting, gargoyle (Oh yes, the thesis is a lovely thing!); but maybe I can tame him (oh yes, it's a HIM).

Not only that, but I'll get to spend lots more time with VeeGee. That's a good thing, of course, but you'd think we could just hang out and watch Sesame Street together and learn our ABCs. In fact, I spend most of the time that I spend with VeeGee in the car headed to this therapy or that therapy, swinging and swatting at her knees so that she won't fall asleep in the car, but will wait for a "real" nap because if she falls asleep in the car (as every desperate mother knows), the "real" nap never happens. That sucks.