Thursday, June 23, 2011

{Giving Her Back Some Control}

Angela-4

Angela is full of personality.  She loves to smile and laugh and also has a temper and a will stronger than I've ever seen before.  This little temper of hers has been showing itself way to much lately and has been rather difficult to deal with.

Angela-3

Most of the time she is the happy little girl you see in these photos, but right around feeding time her little temper starts to flare.  I have been doing so much thinking about this lately.  Feeding and Angela's learning to eat has been very interesting to watch.  She has learned so quickly, what takes some kids years to learn.  She went from taking nothing by mouth to taking everything by mouth in less than two months.  She does enjoy eating when she wants to.  She is able to express her preferences and we try to give her yummy food that gives her variety as well as lots of texture which she prefers over boring purees. 

Angela-1

Feeding used to be a lot easier with her but lately it has become a battle -- one giant battle for control.  I don't blame her one bit.  Most of her day is totally dictated by us -- we choose what she does, when she does it and what toys she does it with.  Her muscles do not work but her little mind is full of preferences and ideas of her own.  I've been trying to figure out a way to give her back the control she wants -- and the control she deserves.

Angela-2

So we decide to re-do our feeding approach and methods.  This has not been easy.  The way we were feeding her was effective and fast with little to no mess, but it also took all control away from Angela.  When she was first learning to eat this method worked and was best for Angela, but she is changing and so must our methods. We are making sure that Angela knows it is time to eat with a verbal prompt and a little food on the lips. Instead of holding her her head back and pushing the food in we are trying to ask her to open and receive the food. This doesn't always happen but we sure are trying!  We previously would put the food on the back of her tough, since she doesn't really have a good swallow -- now we are trying to clear the food with her top teeth and allow her to move the food back and swallow.

If she's in the right mood this seems to work, but it has not been easy.  Feeding is a very difficult thing -- it's something she needs to do yet we also want it to be a fun happy experience.

Really excited and eager to see the oh this is so yummy switch turn on in her head -- I know it will happen!

6 comments:

Kelly said...

Mercy, I love these pictures. So sweet and full of life your Angela is.

Kristina said...

Feeding is just so tough sometimes. I agree that our children want more control over feeding - I've often though how I would hate to be fed every meal because even having someone give me a bit off a spoon isn't even appealing to me!

With Emma a couple of things really worked to give her more control. We use the iPad for the More, All Done, Eat and Drink. If you have TapSpeak you could program More into it so she can tell you when she wants her next bite. Also, you could use a big mac switch or even an item on her tray to signal more. If you put two items out there, one on each side, you could use one as a more signal and the other as an all done signal. Emma really likes to tell us more and all done when working on oral motor exercises which is something she hates - it gives her a lot f control and since we implemented her iPad during oral motor it has been much more successful.

The other thing that is really messy, but very effective with Emma is her feeding herself. It requires hand over arm assistance - Emma hold the maroon spoon great and I help guide her hand to scoop the food and then to make sure she makes it to her mouth as her aim would take the spoon to her cheek. It's messy, but Emma is so much happier to eat when feeding herself. So I do a lot of laundry :-)

Not sure if these tips could help, but thought I'd throw them out there because anything to make feeding easier would probably be welcomed! Congrats on how far Angela has come with all your support! What an amazing little girl :-)

Carrie said...

I am a special ed teacher with most of my years spent in the multiple disability population. I have dealt with a few kids with feeding issues. I definitely think that trying out self feeding is helpful, even if it is just for part of her feeding time. It might be messy and she might not get much in but it might make her feel more in control. I definitely agree with Kristina that using communication devices is a great way to give her more control. You could also introduce signs, with a visual impairment you would need to use hand in hand signs.
If she is not getting fulfillment from the food, is there a reward that could be given for taking food in? I once fed a little boy that would only eat if he was able to listen to chicken dance Elmo after each bite. Could she use a mesh feeder? You put food in the mesh and then she can orally explore it without fear of choking.
A variety might also be good. I had a blind student once and we always made sure to give him his foods in the same order every day unless he indicated a preference. We did meat first, then fruit, then veggie and then repeated. Even with puree I tried not to mix many things together.

I do not know if this helped.

Kris said...

Just wanted to say, I am a I guess a lurker. I do not comment much, but have followed your amazing journey. It was just so nice to see Angela's beautiful face. Her and Madison look so happy together.

Jade said...

I dont want to jump in acting like I understand your little one's eating issues and health challanges behind the eating issues.
It does however sound very familiar to some of the challanges my clients with autism have had. Especially the aspect of it being easier when she is in the mood. Have you guys tried the reward system for each time she opens her mouth. Like the one bite one tickle kind of thing? This method is very useful with the spectrum population and with enough consistancy you can start spreading out the rewards to every 5 bites, then 10, til she's eating on her own or with little help.

Again, I dont know her specific challanges, and appologize if this is one of the first things you've tried. Just thought I'd throw it out there.
Hope you and your family are having a fun summer day :-)

Jamie said...

She is adorable! But you already knew that. My daughter was a little stubborn when it came to eating, then just decided she was ready to do it. My boys, however, were content with a bottle or solids. As long as it was FOOD, they didn't care. :D