28 June 2011

FAQs Continued

As for an update, Bennett is doing really well.  He enjoyed avacado during Speech Therapy today so that will begin to show up on his menu now.  There have been a few meals that we have had to skip for a variety of reasons.  We try not to miss meals but there are times when we have no other choice due to time constraints.  We have been absolutely delighted that Bennett has eaten a ton of food during those times (2 ounces of food).  Whenever I feel this protocol is overwhelming and fruitless, all I need to do is let him eat on his own so I am reminded it's working!!  And that feels SO good!

Ok, here is a follow up to my earlier FAQ's about Bennett's eating protocol.  Hope this helps!!  It's been a great exercise for me to articulate the whats and whys of what we are doing with Bennett.  So, keep 'em coming.  (::EDIT::Olga, you're keeping me on my toes! :))

1) What happens if Bennett decides he's no longer bribeable? If he no longer cares that there's no TV or no toy, or the toy you have is not worth going against his own sense of self? I assume the program doesn't allow for a "if you don't eat, you don't eat" response?
Well, this happens.  There are times when the toys are boring.  There are times when the toys just aren't worth taking a bite.  This is why we have to keep thinking of new toys or new materials that might stimulate and motivate Bennett (in fact, went garage-saleing on Saturday to look for fun new toys).

But, then there are days when even the best toy won't work.  Sometimes, like when Bennett is tired, nothing is really going to work.  However, once a command is given (such as "take your bite"), a command must be follow throughed (just as is so in parenting).  So, if we say, "take your bite" and Bennett refuses to take his bite, he has two options.  He can change his mind, take his bite and get his toy.  Or, he can just wait out the time.  (The meal is always over after 25 minutes.)

The thing about this method is that everything is controlled for Bennett except whether or not he eats.  We will not ever force him.  So, the place, toy, food, amount, pattern and feeder has been predetermined.  Nothing he can do can change any of those things.  No amount of crying, kicking, screaming, spitting out food or refusing to eat will change these things.  The only thing Bennett has control over is whether or not he will eat.  Again, the goal of the control is to help Bennett be successful.  His only job is to eat.  So, if we refuses to eat, we honor that.  But we hope that by taking care of the other factors, we will entice him to eat.

2) When does the program envision him recognizing appetite (ie, when do they cut calories?)
I don't think the program envisions him to recognize appetite at all.  I think this is the whole premise.  Because a child like Bennett may never feel hungry, he is being taught so that whether he is hungry or not, he must eat.  The goal is to encourage his natural hunger cycle to appear.  But the success of the program does not depend on it.  Bennett cannot afford to wait upon his body to tell him when to eat.  He simply must eat, just as he simply must do his daily chest therapy treatments to stay well.  In respect to cutting calories, do not believe we will ever cut Bennett's calories.  We will wean from the tube when his oral intake has gone up enough to make that jump (usually when he's at the cusp of replacing the calories he's taking via tube).  But Bennett will always need to push the calories due to Cystic Fibrosis.

3) Why do they not allow a child to receive food when they show actual, self-motivated interest? What's the reasoning behind that one?  
There are some times when Bennett can have food when he wants.  For example, in the evenings, after he is done with all of his feeds, Bennett can have anything he wants to eat.  Tonight, he chose to eat chicken, pasta, broccoli and carrots from the meal.  I was very happy to see him eat up so well, especially after he just ate!  However, I was disappointed to watch how he "pocketed" the food under his tongue which meant he didn't eat and swallow correctly like he should.  (Even if he eats a ton of food, if he can't eat it correctly, it will do no good.  He is more likely to choke and gag, therefore, be turned off by food he is not eating correctly.)

The goal of the program is to keep Bennett from using this poor oral/motor skills too often since we know that the more he uses skills incorrectly, the more it will be difficult to correct later.  So, while I was happy he was eating, I was not happy he was eating incorrectly.  If these items had been presented in his meal, they would have been done so in a way that would help him use only his correct eating skills and would have allowed us to stop him from eating incorrectly, if it was necessary.  (For example, he sometimes wants to blow bubbles in his milk.  We must correct him by saying, "That is not a drink, Bennett.  Take your drink" in order to redirect his good behavior and not reward his poor eating skills.

I had to learn my own lesson of not letting Bennett eat between meals.  Like any mom who is desperate to have her child eat, I went against the hospital's protocol and fed Bennett tiny bites in between his meals after a few days at home.  I won't do it again.

Bennett fought me more during the day of those meals than during any other time.  Even the smallest amount of food can affect his hunger pattern, I am told.  But in addition to that, he was getting the message that he didn't need to eat during our "meal times" because he knew mom would give him whatever he wanted after the meal time.  So, it turns out, I was actually sabotaging his success.  I learned that if he came to the meals not hungry or with the belief that he was going to get to eat whatever he wanted later, he would fight me even harder than he would otherwise.  So, I made a decision after that day that I would not do that again.

1 comment :

  1. oh breck, the last thing you need is me to keep you on your toes! mama, you need to sit down, and out those feet UP. (ok ok, i never managed to back in the day.)
    thanks for so kindly answering all my questions. i wish you much gentleness on this journey, and a sense of peace (which seems to be emerging from your Exit Perfection post). i have my deep lingering doubts as to how behavioral programs foresee kids making that leap from mechanical eating on command to eating because they want to (since kids need to learn their own hunger cues before they will want to eat), but from your writing, i am sure you will find the best for both your boys.
    the best advice i ever got about my son during the turbulent times was to love him (i would get so lost in thought about his situation that i would forget to talk TO him). and as far as my older daughter, who was 3 when all of this started, i just tried to include her in his care in non-scary ways (the normal "can you get me a new diaper?" things), and shelter her from as much as possible. i, too, worried about her emotional health, and his, especially his fears. even after he was weaned, he would melt into the floor, hiding, whenever we approached double doors of a new building. too much like the hospital, i suppose. my daughter just turned 6, and apart from some very normal sibling rivalry, she seems very OK. she will ask questions, such as "are you glad i was never as sick as zandy?", so i know his medical history is part of her history, too.
    anyhow, it's late here and i'm rambling. my heart goes out to you and your family. good for you for letting go... i think we're better mothers when we can let ourselves breathe a little :-)


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