Why Not Sign?

I just had this conversation with VeeGee's ST (speech therapist) yesterday about whether or not we should be focusing more on signing with VeeGee to help her communicate. VeeGee has been taking fish oil for about three months and her language ability (caveat in a moment) has increased dramatically. What I mean by ability, though, is that she is stringing longer and longer sentences together and clearly producing much more abstract thoughts/statements. Problem is, her apraxia itself has not improved enough to make her speech any more intelligible. In fact, because her sentences have gotten so much longer and now include non-concrete things that aren't in the immediate vicinity, she is actually harder to understand. Pair this with her increased desire to communicate, and you can imagine the mounting frustration.

Anyway, I asked her ST about whether or not ASL would help VeeGee and she said that it wouldn't necessarily be the best use of time/resources for her because she would have such a learning curve to catch up with the words she's already "using" that it might actually slow her down. Also, she said that it's important for VeeGee to keep trying to verbally communicate, since not everyone is going to understand her with ASL anyway, and so her frustration at not being able to say/be understood wouldn't necessarily go away. Finally, she suggested (a while back, and we have ordered) a augmentative communication device which, she thinks, is going to do more to help her with the motor planning aspect of her apraxia (because of the time/planning it takes to find the correct button) PLUS it will give her a "voice," which she can then mimic.

Now, if VeeGee had had a better foundation pre-verbal with ASL the story may be different, but that's not the case. When she came to us she was using a very limited amount of sign but immediately abandoned it whenever a verbal approximation achieved the communication that she was attempting. I think it has to do with the impulse that children with apraxia have. It's my understanding that, generally, the desire is pretty high to be able to communicate verbally and the outlet that ASL provides is still just a band-aid - a good band-aid in many cases, yes, but not always, because it doesn't actually treat the problem but rather is simply a coping mechanism and/or stop-gap.

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.

Too Much Going On?

Oh, yeah. I am right there. It seems like there's just too much. But someone reminded me the other day that therapists know we can't do it all, they're human too, they just have to lay it all out there because that's their job. Our job is to sort through all that stuff and figure out what's going to work best for our child and for our families.

A's therapists keep telling me we need more structured activities (I've posted, in exhaustion, about this before). What I've finally come to realize is that I'm only going to be able to provide a certain amount of structure. Aside from that, she has to be able to LIVE for goodness sakes. And unstructured time is what is most precious, and creative and educational and therapeutic, in my house. I think (I hope) she's learning all of those things that they want her to learn in a structured way by interacting with her daddy and me in the garden; walking on uneven ground; touching sticky, wet, gritty stuff; barking at the dogs; tasting her pool water (ick, I know - but she's SWALLOWING, something we couldn't get her to do in a "structured" environment); etc. If she had siblings, there would probably be even more of that (but that's not happening).

All that to say, I have to do what my heart tells me. I know what's best for my kiddo, better, even, than therapists. This I know for sure.

A's jaw distraction is scheduled for September 11th. She'll be in the hospital for about 2-3 days and then she'll be in the distractor appliance for about three months - three weeks of which we'll be turning screws to pull her jaw forward. The reason that this surgery is necessary is because her airway is blocked by her tongue due to the fact that her jaw is recessed so severely. This is the reason why she has a trach and a feeding tube.

This surgery is has an extremely high rate of success, and we're really excited that she is going to be able to go ahead and have it done. The sooner she gets this done, the sooner her trach will come and and the sooner the g-tube can come out. It is extremely important that we get that tube out as soon as possible because of the risks to her development (particularly nutritionally) that having it in so long causes.

A doing SO great at school and in her therapies. She's learning new signs all the time and is really making huge progress in physical and occupational therapy. She's gained weight AND height, and her pediatrician is really pleased with where she is on the growth chart (even though she's in the 5th percentile, she is height/weight proportionate). She's also drinking A LOT of water with a regular cup these days, so much so that we have to watch out to make sure to close the toilet lid and tip over any water receptacles in the yard, or else she'll be chugging that down.

We're working on helping her learn her colors and to point at pictures in books. We read tons and tons of books. We also like to make music with our drums and the new rhythm wall that K and I have built for her in the backyard. So far we've got a "chime" made from recycled formula cans, a beer cap chain that jingles, and a bamboo mobile that makes very pretty sounds. Lexi likes to carry around utensils from the kitchen to bang on her new wall. We LOVE it!

Anyway, please continue to keep her in your prayers, and us too. It's been such a joy learning from and with her, and we are so grateful to have her in our lives.

Structured VS. Child-Led

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So, for the third time in two weeks one of dd's therapists gave as "homework" 10 minutes of structured time about 8 times a day.

Somehow I'm supposed to add one more hour of "structure" to the day of a child who already spends 5 hours hooked to a feeding pump, at least 2 hours in therapy, and approximately 2 hours buckled in a car seat heading to therapy . . . . OH, and then, because she's two she's gotta take a nap. And how about family time in the backyard playing with the doggies and daddy?

Please tell me how this is supposed to work.

What the therapist is ten minutes on a start-to-finish project like stacking and playing with blocks, then cleaning up. Or matching colors on a peg-board or putting the appropriate face parts on a Mr. Potato Head. I don't know if I have the attention span for that!!!

Problem is, A is so, so independent. I like that about her, but I do see (as I'm peering through the therapy and school windows) that she's more easily distracted than other little ones her age. She doesn't like to finish stuff - a whole book is too much most of the time.

Best I can do, right now, at least, is read to her while she in the bath (after the screaming bathing part). I can *almost* "command" her attention then.

Correcting A Therapist - Ick!

Yesterday I had to ask my A's PT (physical therapist) to change the way she spoke about dd's posture and legs. She tells dd to "sit pretty" to correct (necessarily correct) her legs. It had been gnawing at me for a couple of weeks because I don't want dd to be told that what she does **naturally** is **not** pretty. I know the PT doesn't mean it in a negative way, but I so think that, especially as she's developing her own language skills, the language that is used to and about her is so critical. I don't mind people saying that she's pretty, it's not that I have a problem with that. Does this make sense?

So anyway, I asked the therapist to not use pretty as a litmus test. She was really sweet about it, but she did look at me strange.

I'm actually pretty proud of myself!