Social Rejection

In some ways it was easier when VeeGee had her trach, because there was a clear outward "signal" that something was different. Now, without it and because of the jaw distraction, only her size signals something different (until someone speaks to her, of course). What we were noticing tonight is how she just doesn't try to communicate with her peers verbally. Her only words are "uh huh" AND "uh uh."

So someone asked, “Can you find some other families with special needs children for your child to make friends with?” Well, you know, that can be problematic for several reasons. One of the main issues, for us, is that we want her to be able to mimic the speech of typical kids as opposed to other kids who, like her, have a difficult time speaking. Also, well, I'd like her to be able to live in the "real world" and not a little enclave of SN people. Besides, the spectrum of special needs is as broad as the spectrum of typical people - so it's not like you can "go shopping" for someone who is just like your kid.

I know that wasn't mean to be offensive, but, I have to say, it kind of was.

For the record, VeeGee has always been in a school with 50-50 kids with SN and "typical" kids. I am most certainly NOT living in any sort of fantasy world about that (well, beyond the occasional, "Wow, this is our reality" kind of thing that, I'm guessing, is something at least SOME of us feel at times).

One thing that I think informs my feelings on this subject is the fact that I have a 16 year old brother who has Down Syndrome and I have seen him in both sorts of situations: inclusive and not. He spent his first thirteen years in schools that were completely special needs oriented - though my parents worked very hard to have him involved in extra-curricular activities where he could also be around "typical" kids. Now he is in a school that is primarily a typical school, and he has a few peers who have special needs.

What I have seen, firsthand, is the way that he has really thrived in both environments, though, now, as he grows older, it is entirely appropriate for his world to begin to expand to include all types of people because - fact of the matter: he will have to live in the "real world" at some point (hopefully!).

As to the quality of relationships that he experiences, and the concern about their potential superficiality, I think, truly, that he experiences most relationships just as they are. He most definitely has real reciprocal relationships with typical kids. They are no more "superficial" than the relationships most people have with each other. Obviously, they are different than the relationship two typical teenaged boys would have with each other, but I don't think they are qualitatively less mutual or rewarding.

I am not looking for my daughter's friends to be her therapists. I am, like any mother, hoping that she will be able to learn good things from her friends. All mothers, I think, try to facilitate relationships for their children which they think can benefit them. Why is it wrong for me to want my dd to be around children who are modeling a strength/skill which she lacks? That doesn't put any onus or burden on her friends to be anything other than exactly who they are. F what it's worth, VeeGee's two "best friends" (insofar as kids her age have "best friends") are typical girls who, somehow, understand her attempts at language. They play and "talk" to each other.

I don't disagree that it is/will be important for her to be around and have the support of other children with disabilities. She gets plenty of that even now through her daily therapies (several of which involve group play) and through playdates and whatnot. I'm not trying to pretend that she's not disabled - that would be virtually impossible - I just want her to have access to as many types of friends as she can have - black, white, special needs, disabled, typical.

We were at a party the other day with some of VeeGee's typical friends. I'm noticing the deepening chasm between her ability to communicate and theirs. It's making her more and more awkward. One on one she does really well with typical kids, but in this particular situation (which was uncommonly frenetic - a birthday party in a very small house, with no outside access) she just defaulted to "playing monster/tiger" and chasing the kiddos around. It was cute at first, but then dh and I both realized that it was continuing because VeeGee just didn't have any other way to interact with the other girls there. Cognitively, she functions on their level, which is what makes this harder, I think. So, we're wondering, "does she know that they're ahead of her verbally? How might that make her feel?"

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.