Sunday, April 1, 2012

Another update

And more of a roller coaster for us.

First, an update on the bus situation.  Thursday morning, I had Sarah outside for the bus early.  Her bus attendant apologized for Wednesday and said she had in her head that Sarah wasn't riding the bus.  That more or less tells me they didn't even show up.  ARGH!  I know her schedule can be complicated, but geez! Besides, she hasn't had any appointments keeping her from riding the bus since we came back from the feeding clinic.

Anyway, as usual, meals are up and down for us.  Every time I think she's doing better and giving up the fight, I get blindsided by a horrible meal and feel like we've gone back several steps.  So frustrating!

So, Friday, I think it was, I tried grits with her for breakfast.  Just a five-bite session that we do for "new foods."  This wasn't really even new, exactly.  She ate grits fine at the clinic, but hadn't really had them in a meal yet, I don't think.  Well, they are apparently now disgusting.  I actually don't like grits anyway, but I was very frustrated with her because she ate them so well at the clinic.  I honestly wasn't predicting a problem.  I was just glad the time cap on the new food session isn't too long because we hit it.  She ate the rest of her breakfast fine.  I don't remember what the heck it was, though, other than her usual oatmeal.

That night was better.  I fork-mashed some peas and put butter on them.  She gobbled them right up for her five-bite session.  She didn't even give them a funny look or anything.  I was so proud of her!

Saturday was her last hockey practice of the season, and it was Daddy's turn to take her.  She did okay, but she is so set on using the walker for skating.  It's easier and she can go faster, but we want her to learn to skate without it.  We are hoping that we can get back to skating on our feet (I can sort of skate on my own, but I've only been ice skating maybe five times in my life) and take her some times this summer to public sessions and see if we can help her a little.  If she can skate independently and hold a hockey stick, the coach will probably move her to another practice session, giving us an extra hour of sleep.

Anyway, for lunch that day, I did a five-bite session of mixed vegetables.  Again, they were fork-mashed with butter.  She refused the first bite, but took a tiny taste (can't remember if it was willingly).  She decided she liked them and finished the bite.  The remaining bites were taken willingly and she did great.  I put peas in her regular meal, and she did very well with them.  She had one problem where she couldn't get herself a small enough bite and needed me to help her, but she was fine once I fixed that problem.

At dinner, her five-bite session was a chicken nugget that was fork-mashed.  She'd had one once at the clinic for a five-bite there and did fine, but at home she refused to try it.  I was annoyed, but not majorly.  I might try one from McDonald's or find out what brand they used or if they did something special.  I don't know.  I put mixed vegetables in her dinner and she needed a bit of prompting and had some minor refusals, but overall did fine.

Today she seemed really interested in the pancakes her aunt was making everyone for breakfast.  I gave her a little bit of mine and fork-mashed them, but she didn't try them.  I didn't press the issue since we weren't doing the protocol.  I didn't try any new foods on her for breakfast other than that.

At lunch, her new food was lasagna.  That's tough to fork mash, so I used a fork and knife and cut it as small as I could.  She devoured her five bites.  Her lunch itself went fine too.

At dinner, her dad chopped up some strawberries and I fork-mashed them into very small pieces.  She was a little hesitant about the first bite, but otherwise ate her five bites just fine.  Her regular meal was a DISASTER, though.  I think it may have been one of her worst meals since being home.  If not, it's up there.  I gave her lasagna, since she'd gobbled it up at lunch, pudding, and carrots.  She ate the pudding fine (of course), the carrots, and a few bites of the lasagna before throwing a hissyfit of epic proportions.  There was kicking, screaming, growling, crying, hitting, swatting at the spoon, spitting, pushing food off the spoon with her tongue, screams of "no", shrieks, and probably some other awful behaviors I'm forgetting.  I apologize to the entire East Coast because I think they all probably heard it.  It took all three adults living in the house to block her. Needless to say, we hit time cap, and I was practically in tears myself by the end of the meal.  I think part of the problem is she didn't chew the lasagna really well like she did in her five-bite session at lunch.  She tried to swallow a bite whole, had trouble doing so, and decided to heck with eating the rest of the lasagna.

Unfortunately, we are overall seeing a decrease in chewing during her regular meal sessions.  I have to remind her frequently, and even then she doesn't always do it.  It frustrates me to no end.  I have noticed that she seems to be chewing her bites when I do her five-bite sessions.  I'm not sure if there is a specific reason for that or not.  I sent her therapist a long e-mail (that poor woman is so patient with me) and let her know what happened and what I've noticed.  The lack of chewing is really concerning to me, and I think it's causing some of the other behavior.  I'm sure she would have been fine with the lasagna had she just chewed it properly each time.  She wouldn't have had the discomfort/difficulty swallowing the lasagna, and things would have been much nicer.

We are going to the clinic on Wednesday to do a meal.  It's not her regular clinic follow-up.  I'm hoping that she will do what she's been doing at home.  I think in the meantime we are going to try to videotape some of her meals.  If we can get either a horrible one where she acts ridiculous on video or at least one where she's obviously not chewing her food, then we'll be burning it to DVD and giving a copy to her therapists so they can see what we're talking about.

On a brighter note, it's Autism Awareness Month!  We lit our porch light in blue and will keep it blue all month in support of our little lady and her other buddies who are also autistic (okay, and everyone who's autistic).

The other cool thing is one of my favorite bloggers, Stark Raving Mad Mommy, made an awesome video featuring pictures of autistic kids. Two out of her four kids are on the spectrum, and she said she regularly hears people say s/he doesn't "look" autistic.  So, she made a video to show what autism really looks like. She requested pictures of kids on the spectrum a week or two ago, and I sent in three pics of Sarah because I couldn't decide.  She picked a cute one.  Sarah is at 0:43, with Elmo, of course!

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