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Saturday, February 5, 2011

Insight into Hallie's Mind

Having found her voice (or having been given a new, temporary one by the wonderful ENTs at CHOP), Hallie has turned into a chatterbox lately.  We love it.  She still has conversational skills that are well behind those of her peers, but she's making progress and we are so grateful for this and I think that Sharon and I know that there is no going back--we need to make sure that Hallie keeps her voice.

Anyway, since Hallie is talking more, she is also providing us with greater insight into how she thinks about the world.  She had the following conversation with Sharon last night which is interesting on a couple of different levels:

Setting:  Sharon came home late from work last night after running a couple of errands related to our little family party for Lea today. So there had been no time for dinner (and I suspect that Sharon did not have much time for lunch, either, since she was catching up on work having spent the prior two days dealing with doctors visits, sick kids, lost car keys that led to a major crisis that was ultimately resolved when we discovered that Lea had hidden the car keys in our nanny's mitten, and a bunch of other fun stuff like that).  So Sharon was starving and her stomach began to growl a lot as she was reading Hallie her stories before bed.

Hallie looked over at Sharon sympathetically and said:  "Mommy, you have a tummy ache!  Don't worry mommy, I will get you some water and you will feel all better!"

Hallie proceeded to get out of bed, run over to the bathroom, climb up and get down a dixie cup and fill it with water, bring it over to Sharon and ask her to drink it.  Sharon, of course, complied.

Hallie, satisfied, declaimed:  "There you go mommy!  You will feel all better.  You won't have a tummy ache anymore."

This was such an interesting conversation.  First, it shows how empathetic Hallie is.  She notices when others are in need and she really tries to help them.  She is constantly getting things for Lea (and Lea, having learned at the feet of the master, reciprocates by getting stuff for Hallie all the time.  This of course does not prevent them from having knock down, drag out fights over stuff just like any other healthy sibling dyad).  And she uses her own experience to try to figure out how to help others, which makes perfect sense (though down the road I suspect that we will need to work with her on that ever important theory of mind issue to help her figure out that others might want something different from what she desires).

But this was really interesting on another level:  it is clear that, when Hallie says that her stomach hurts, she means (or at least sometimes means) that she feels hungry.  But she has no idea that this is what is going on with her body.   It may also be clear now why it is that she constantly requests water.  She drinks tons of water, all day long.  This is a great thing for her body in general, but not a great way to satiate hunger.

One interesting thing that lately has struck me about autism, or at least Hallie's version of it, is that the communication deficit that is so central to this condition is not just related to communication with the outside world.  Rather, Hallie has trouble communicating with herself.  And if you cannot interpret the signals that your own body is sending you, of course you are going to have problems communicating with others and interpreting their body language, right?  This may be why professionals have noticed that sensory integration problems are prevalent in autism.

Anyway, while all of this is extremely interesting from an intellectual standpoint, what I want to know is how to help Hallie make those connections so that she can feed her hunger appropriately.   Conventional feeding therapy doesn't really do the trick (and it's certainly not going to teach her how to interpret hunger.  It  kind of does the opposite).  If anyone has any ideas about how to do this, please let me know!

8 comments:

Lydia said...

Email me for further discussion? :)

Robin Elizabeth said...

Elizabeth will only drink water at home now. And like Hallie, tells me that her tummy hurts when she is hungry. Interesting perspective on communication with self that I hadn't noticed.

BusyLizzyMom said...

Elizabeth still has no sense of hunger or thirst. The only way I can tell she is hungry by a gag/retch/cough or an emotional meltdown. She sometimes tells me she is hungry but that is only due to boredom in the car. I really think that her inability to understand what her body is telling her relates to her prematurity. They probably spent the first part of their lives feeling hunger and pain but never got to experience relief. Elizabeth is the same with pain, she rarely complains of pain.

lynn said...

My daughter is Asperger’s and also says her stomach hurts and water makes it feel better. She is 4 and has average verbal skills for her age. She is very clear that water makes her stomach feel better, but food doesn’t. Sometimes she even says that food makes her tummy sick (often when she has a cold – even a very mild cold). I think she has some sort of stomach pain that is not hunger and that water actually helps. I wish I knew more about what is going on with her. Her ped GI says her GERD is very mild and she does not have food intolerances.

Brenda said...

So great to hear about her voice! That's so exciting!

Yes, very familiar with this. Jack has problems figuring out his body, too. Has never said he's hungry. Often can't tell when he has to pee. BUT he does ask for water a lot when he has reflux. Yep, just throwing that out there to worry you. (you can tell me to leave now).

Smilen Champ said...

Hi Hallie
My name is Jenna. U are an inspiration and a hero. U will be in my thoughts and prayers. My site: http://www.miraclechamp.webs.com

janie said...

Yes. Please keep me posted on further discussion, too. It's amazing I happened to read this blog today because most of it relates to my 5 year old, "23-weeker," daughter, Heidi. You had signed her guestbook page a few years ago at www.caringbridge.org/visit/heidi
She too, is extremely empathetic in understanding what others want and their feelings. For instance a couple years ago I had a conversation with Heidi about the following: Heidi's baby-sitter made a western costume for me to wear to a neighborhood theme party and I was debating about wearing the vest. She said, "Mommy, you have to wear it, otherwise her feelings will be hurt." Also, she is constantly drinking water and doesn't seem to get full without eating large amounts of food. I have attributed this to the high-calorie formula mixed with breast milk that they pumped in through the gavage feeding tube while in the NICU. I've even asked the pediatrician about "gastric bypass" for these kids with "preemie tummies," but again, our babies are "unchartered territory," so we just don't know. Please let me know if anyone has suggestions. jjaeger@mthcs.org
Heidi's mom
www.caringbridge.org/visit/heidi

NB said...

I'm just here to say that I'm watching for updates! --Nadia