You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: More on Jessica's Oral Defensiveness
(c) 1996 Wide Smiles
This Document is from WideSmiles Website - www.widesmiles.org
Reprint in whole or in part, with out written permission from Wide Smiles
is prohibited. Email: email@example.com
More on Jessica's Oral Defensiveness
by Joanne Green
A response that was posted to another mother whose son is learning how to eat.
Given that so many cleft-affected kids are in fact orally defensive (not all, but many), I don't really think this subject is off-topic. Comes under the heading of feeding problems. And since one of the biggest problems with this topic is the fact that it so often goes unacknowledged, I think that at least for now we should talk about it publicly. When it happened to me, I thought I was the only one. But I wasn't. I didn't have to be alone, but I was. You are not alone.
Jessica and your son had a similar problem, but with different components. For instance, except for one time, I don't remember Jessica ever gagging. She was more of a fight-tooth-and-nail kind of girl. She would purse her little lips tight over her iron-clenched jaws and fight for all she was worth - with her feet, her hands, her fingernails - head-butting - - anything but her teeth. She was desperate to keep anything out of her mouth! (Talk about expending energy when she eats!!!) And her weight gain was horrible. Even now, at age 6, she barely weighs 30 lbs - less than that if she gets a cold or an ear infection!
I first got her on the bottle by force-feeding it. She screamed, and when her mouth was open to scream, I would squirt a tiny bit or milk through the Mead Johnson (bottle) into her mouth. A behaviorist would call that "flooding". It worked. In about 2 weeks, out of nowhere, she willingly took the nipple - - 21 months of age. She stayed on the bottle for 8 months, but she never once, in all her life, ever held her own bottle. She hated it.
Once I began to view this as a phobia I started systematic desensitization. That is a pairing of the thing that you fear, in graduated steps, with relaxation techniques. I had to adjust that to fit a small child. To help her relax, I turned the lights down, I massaged her shoulders, arms and legs, we had soft music (or I hummed) and I tended to gently rock and speak with a low, soothing voice. She would be practically hypnotized by the time I introduced the food to her. I had broken down the steps to eating "normally" based on the signals she gave me. For instance, I knew chewing food with texture would be the hardest thing she could ever do. Putting a spoon in her mouth would be next to impossible. The side of a glass would be easier than a spoon. The side of a spoon would be easier than a spoon inserted into the mouth. etc. It took a lot of observation to get the steps down! Then, during our feedings, I would start out with what she was familiar and comfortable with (at first that was nothing at all, but by the time I started this, she already willingly let me squirt the Mead Johnson for her and she would take the nipple in her mouth, so I started with that. While she took the bottle, her arms would be outstretched and her hands in fists, knuckles white. I would feed her with one hand, and with the other, gently massage her hands until they opened. When she began to be more relaxed during the feeding I would introduce something new - the side of a glass, or the side of a spoon with liquid on it. If she tensed up, I backed off. It was a very long, very slow process. Most of the time, she would be the one to indicate that she was ready for the next step. After unsuccessfully trying to offer her the side of a spoon several times, one day in a restaurant, my husband was eating some soup, and she leaned in to him, with her mouth open, like she wanted a taste. So I said, "Give her some!!" She not only took a taste, but she ate all of my husband's soup and what was left of mine! And from then on we started our feedings with the side of a spoon and liquids. Then we tried to thicken up the broth, but backed off when it made her tense up. Finally, just 3 days before her palate surgery, out of the blue, as I was putting plates of food (pasta, I think) on the table for the boys, Jessica climbed up on the chair, picked up the spoon and took the plunge! There was a party at the Green house that night!
As far as weight gain is concerned, like I said, she never gained very well anyway, but we also supplemented her diet with ensure or Pediasure. When those were so expensive that we were going broke just trying to keep her from losing any weight, we also put protein powder and bulk-on supplements in her food, with the doctor's approval, that we got at the health food store.
The technique you are using with your son is a behavior modification technique based on the concept of positive reinforcement. [every time he takes a bite, a penny is given, the pennies are saved to buy a toy] I don't know if you son's problem has the same basis as the way I envisioned Jessica's, but her eating problem (if I conceptualized it correctly) was sustained on a negative reinforcement paradigm as an avoidance behavior. (Her non-eating behavior continued because of the absence of the envisioned negative consequence of having something in her mouth - ie, gagging or choking. As long as she had nothing in her mouth, she did not gag or choke, so in her mind, the plan was working! Avoiding that which scared her was more important to her than any reinforcer I could have offered her. Also, the bottom line in Behavior Mod is that a reinforcer is only a reinforcer if it increases the behavior. If pennies lead to more eating behavior, then they are reinforcing. If they do not, then they are not a reinforcement. But if they were once reinforcing, then maybe he has reached the point where he feels they are not enough of a trade to allow him to extinguish his avoidance behaviors.
Why not share this post with his behavior modification specialist and see if she can make sense of it. I fear that I am not being exactly clear.
One problem here is that these kids may have the same problem, but for different reasons. Jessica was also tube-fed for a long time (gavage). In fact, she had never been fed normally before she arrived for adoption at 20 months. My fear is that on the occasion that she WAS offered food in a more normative way, it was done roughly, and hence - probably - the phobia. So she not only had an irrational fear, but she also had a skill deficit. She didn't know HOW to eat. She simply did not have that skill. She had no idea how to use her tongue, or her throat muscles or her cheeks to make that food do what it had to do to go down smoothly. So while we dealt with the fear, I also had to help her to "learn" how to eat.
Her only real big problem now is that she is a very sloppy eater, and although she has this strong attachment for a particular spoon and fork in the silverware drawer, and insists on having them at her plate at every meal, she rarely uses them unless prompted repeatedly.
Oh yeah - and to answer another of your questions - Jessica didn't gag when we put food in her mouth, but she did a very strange thing. She would just let the food sit in her mouth, like it was something beyond vile and she had no idea how to gracefully get rid of it. She wouldn't even close her mouth! Then she would lean forward and try to get the thing to fall out. She would not spit it out - just try to get it to fall out. (again, she didn't know how to use her mouth muscles - even the spitting ones.)
She also would hang onto a piece of food forever and not eat it. One day I put a dorito in her hand and just to see how long she would hold it, I didn't take it out. Five hours later, when it was time for her bath, I pried that same dorito out of her hand! Then she went through a stage of not eating things, (finger foods) but she would lick them. Now there was a crowd-stopper for you. Little girl walking through the mall, licking her cookie!
For anyone, if you ever want to just talk and feel like running up your phone bill, give me a call. 209-942-2812. It's a long, hard, lonely road - - but you don't have to be alone. I was there, and I will never forget that journey.
--------------------------Joanne Green is is the mother of three cleft-affected children. She is also the Editor of WIDE SMILES Magazine.