Monday, August 15, 2011

Eating and Talking

Hello.  Yes, I'm still alive.  It is so hard to finally break the silence after I haven't blogged in a while.  And when I don't blog it means I'm really busy, feeling crappy, or a little bit of both (sometimes a lot of both!).  And I suppose it's been a little of both this time.  I'm trying to enjoy the summer - but, frankly, have been too busy to do that.  And I think I'm tired of thinking about Harlie starting kindergarten.  

The whole eating by mouth thing is REALLY stressing me out.  I don't see how in the world Brandy is going to be able to feed her by mouth at school - or at least in the cafeteria at the same time as her classmates.  Harlie has decided to go through another very uncooperative phase in eating.  It is so frustrating.  I don't understand what makes her do this.  You would think after YEARS of this that she would realize that we aren't giving up.  She isn't going to win.  And the food will get in her tummy one way or another - so just eat it already!!!!   Ugh.  

There is a small sliver of hope that she will be in a setting with kids eating and she will want to eat, too.  But, I don't think that's going to happen.  She has been in a setting like that to a smaller degree and it didn't have any affect on her at all.  She doesn't WANT to eat by mouth.  Period.  And trust me when I say that there are days I don't WANT to feed her by mouth, either.

When she is uncooperative (like she's been lately), feeding her in the cafeteria is not going to work.  Not without completely making her look just awful to her classmates.  And the thought of them seeing her like that makes me ill.  So that means that Brandy will have to feed her elsewhere.  And thinking about it just makes my heart hurt.  And it makes me wish that her jaw didn't form the way it did.  It created such a horrible chain reaction.  And I hate thinking like that.  It's such a waste of time and energy.   She was born with these challenges and that's just the way it is.  Wishing it away is pointless.  But sometimes my thoughts go there, and I have to shake my head and make them go away.  I do wish things were different.  

On occasion she'll have a great day, and she'll willingly go get a bib and then willingly get in her high chair.  (oh, how I hate writing all that when she's almost FIVE years old!)  I get all hopeful that she's hungry and she realizes that feeling and has finally learned that eating food alleviates the discomfort of hunger.  But then she won't do it again for weeks.  

And on Friday I spent all day (literally all day) in the kitchen making her food and pureeing it.  I was in there so long that my legs were tired and sore.  And then I remembered that I was going to run 12 miles the next morning.  Ugh!!  Talk about poor planning!  And all for a girl that hates to eat!!!  

Luckily, Saturday was a cool day and what a difference 10 degrees makes!  It ended up being my best run so far!  

So, Kinder Camp is going well.  Harlie seems to like it.  The kids have been really good and accepting of her.  And what really surprised me is how concerned they are about her.  They have asked Brandy a lot of questions and want to know that she doesn't hurt and that she'll be okay one day.  One little boy asked her if Harlie would die if she didn't have that thing in her neck.  Brandy said that she told him that she needs it to breathe, and let him come to his own conclusions.

They have snack time while there, but that is so close to Harlie's breakfast there is no way that she would eat then.  So, she just does something else.  One of the kids asked Brandy why she doesn't eat a snack like they do.  Brandy just told him that she doesn't like snacks.  They also want to know if she'll ever be able to talk.  

Last week Harlie's speech therapist went to camp and worked with her there, focusing on using her device to talk to the other kids.  It appears that Harlie thinks that a lot of communication (verbal, I mean) is unnecessary.  She probably thinks, why do I have to ask you for a paint brush, when we are doing a painting activity?  Isn't it obvious that I need a paintbrush?  And paint?  And paper?  

We say so many words because speaking is easy.  But, signing and using a communication device is not easy.  It's not natural.  And it takes thought and effort.  So, during the painting activity she came to the conclusion that painting wasn't worth all the work of having to use the device.  So, she quit.  

I will say that she is making a lot of progress.  She willingly went to the device (when Brandy and I were in the middle of a conversation) and said, "Brandy, I want to watch tv."  I think that is huge.  I have so much more to tell you about the device, but can't go into it now.  I have to go to sleep since I have to run early in the morning.  

More soon!
Thanks!
~Christy

1 comment:

Susan said...

Hugs Christy. I can't help but wonder if the times she eats are when she is super hungry. Other times it might not be worth the effort to her. A lot of kids are tube fed at school in the nurses room. But Ainsley has participated at snack time at "school" since she was 2. She gets a cup, and some of what other kids are having (if she asks for it) even if she just licks it. Perhaps there are foods she likes better than others that she would be willing to sit at the table for. Pudding? Yogurt? Fruit leather? It would be great if she could just eat her own way, at her own pace with the other kids. Ainsley too is starting to ask for tube feedings. I think she gets tired from eating. It's frustrating. Don't let it get you down!

As for the device. I agree, it's not easy to incorporate use. Personally I don't think we can expect them to use it in place of spoken language all the time. We do vocalize things just because it's easy and we can. I look at AAC devices as enpowering people to be able to communicate when they want to. Unfortunately for us, in order for them to do that you have to teach the child to use it.

You are dealing with a so many challenges and you are doing a fantastic job my friend! Don't expect yourself to be a saint and never wish things were different, ie. easier. (((HUGS)))