Friday, May 14, 2010

a little more about Darlens...

I have gotten a bit of feedback/advice on my rant from yesterday- thanks :) I want you to know that I do understand that the gagging is completely a conrtol issue (for Darlens) and not an actual gag reflex. I understand that, even if subconsciously, he wants what he wants and he will do what works to get that. I understand that my reaction to these power struggles are majorly affecting his behavior. I would label him failure to thrive. Berlancia was "failure to thrive" but once she got attached to me (which took months) she would do anything to please me. Ex: If I wanted her to eat and gave her good feedback, she would smile, stuff her face and be happy, and then gain weight. I was able to get to the point where I understood Berlancia's body (she had AIDS) so well that I was able to control her fevers by knowing her behavior days before and keeping sure she was keeping hydrated/eating yogurt. It prevented her from getting sick. It worked for her while I was there... I don't know the science of why, but it did. It took a long time to get to that point, but I was fortunate enough to get to know her like that and for whatever reason it worked for us. Nickenson had gag reflexes which were more of a tolerance issue than a control issue. Once I figured that out I was able to feed him a little at a time more frequently and he started to do better. I know neither of these kids are comparable to Darlens, but identifying the natural gag reflex vs control gag is what I have learned from them. (yes- both of those kids died. no- neither child's COD had to do with the fact that they wouldn't eat. I got past that point with both of them before they died).

I understand that the fact that Darlens has been neglected and starved for three years makes him unusual and that "normal" care/punishment/treatment will not work on him. My dilemma is I don't think there is one "right" solution for kids like him. Every kid is different and I believe each child is different in the way they respond to things. Despite my many attempts/efforts, I have not found the one that works for him. What I know for sure is that if I don't get him stronger/fatter/more mobile he will continue to fall back and, if he lives, will be even more mentally and physically handicapped than he already is. I don't want that to happen. But at the same time I want him to live (obviously).
So, how do you get a child to eat when they don't want to? I tried tubing him but it didn't seem to make much of a difference. One day it would work great and the next he would see the food going down the tube and throw up. Ok... so I tried when he was asleep. He's a sensitive sleeper. Fail. He has control over his own body. I need to find a way to manipulate him into wanting to eat when I need him to. If he doesn't want to eat and I put food in his mouth he holds it there for HOURS. And then drools it out when he falls asleep. If he chooses to eat, he'll chew it and then decide when he's done. The amount of food he can stomach is not an issue: today he ate 2 eggs, 3 crackers, and milk with yogurt all in the same hour. That was this morning and it is still in him. Yesterday he ate a bite of eggs and when I gave him another bite he threw it all up and then proceeded to refuse to not eat/drink a single thing all day except for if I gave him straight pedialyte. My enthusiasm with him eating (positive reinforcement) does not seem to bring anything new into the control game we play. If I yell at him or smack him on the cheek while he gags he stops and doesn't throw up; but that is (debatably) a hindrance to his psych issues with food.
So a summary on him: I know it's not an actual food tolerance issue since some days he is able to eat anything and everything with no gag reflex. After a good day he decides he doesn't want anything but his orange flavored pedialyte. He refuses to drink anything else. He refuses to eat anything else.I have tried mixing things with pedialyte and tried not doing it in front of him and he notices, and gags. He wants what he wants and his whole life has conditioned him to win at the food power struggle. If it's one of his "refusal to eat" days, I can refuse to give him pedialyte in hopes that he will eat/drink other stuff so that he gets the calories he needs, but he just opts out of eating/drinking at all. After all, he is 3 years old and came here weighing 11.4 pounds. It's not like the kid isn't used to not eating for days and days. SO. My options are- 1. let him not eat and wonder if after a couple days he will eat whatever I give him and 2. give him the pedialyte and get those calories down him and keep him hydrated and hope something changes with time.
Neither of these have worked yet. I need an option 3. Anyone???


  1. I don't have any ideas for option 3, but I know God does. Will be praying that God gives you peace in this situation. He knows Darlens inside and out. He knows why he is reacting the way he is. Will be praying that Darlens trust toward you will increase and soon. You are doing a great job! Darlens is lucky to have someone like you fighting for him! I will be fighting for him too in prayer.

    B from Seattle

  2. Praying for you as you continue to work with Darlens and try to help him! How frustrating! No thoughts or suggestions, just prayers

  3. Anna, having adopted a child with RAD issues (Reactive Attachment Disorder) and hanging out with other Mom's with kids with that issue, my thoughts went immediately to RAD issues when you were writing the first post. I wish you could read Dan Hughe's book, "Building the Bonds of Attachment" as it was one of the books that helped us the most . . . Maybe it doesn't all fit Darlens, but it keeps naggling at me . . . that if his life has been insecure and chaotic, he's found this one sure-fire way to feel in control and "safe" (ironically though, it makes him feel LESS safe). One of the things the book taught me that was POWERFUL with our Dd was to verbally tell her that she was safe--that we were strong enough to keep her safe. She would rage horribly, and we would hold her and just keep calmly and lovingly saying, "I know you are angry. I know you feel scared. It's OK. I'm strong enough to keep you safe until you feel calm again. I'm strong enough to keep myself safe until you feel calm again." ETC ETC. She later told me that it made her feel "so good" to be told that I was strong enough to keep her safe . . . thus confirming Dan Hughe's theory on the importance of that being verbalized to kids who didn't have that safety and bonding while infants/toddlers. I don't know if ANY of this will be helpful to you . . . BUT, most important of all, seek God's face for little D. I know with our daughter we have run to God many times for guidance and He has given us insights or words or ideas that were "just the ticket"!! We also sang songs with the name of Jesus in them while rocking her, and prayed spiritual warfare prayers over her (while she was screaming!) and those things definitely seemed to help too. Seemed that there was some component of that involved as well. God bless your work!

  4. And now that I am processing Pedialyte is *NOT* pediasure (have you tried pediasure? vanilla/chocolate/strawberry milk yumminess -if you can get it-!)
    Well, olive oil has omega-3's and is 120(?) kcals/tablespoon. It can be mixed into clear fluids and our very sensitive to any change RADlet doesn't notice it. Not especially nutritious otherwise, but I am used to just having to fight the kcals into my little one.
    Would he be able to move even just a little bit if you put everything he would want just a little out of his reach? Like, say 1-2 feet? So he has to push himself to get to things. It's possible that he may not be able to stand without massive cramping, not necessarily visible to anyone else, but painful to him none-the-less.

    Now, for the off the wall type of stuff, which I'm imagining you already do, can you bottle feed him skin to skin, in say, a carrier?
    I've heard that if a child is just in the carrier all the time, with "mom" (which, let's face it, is effectively who you are), watching her do things and interacting with the kiddos who are choosing to do all they can, and who is only focused on when in compliance (even microscopically, at which point they become the center of the earth)-eating, trying to move, making attempts at communication other than humming - they will build up tummy and neck muscles from holding their head up, bonding from the constant connection, social skills from observing the interaction of others, and a desire to interact with the people who they see having so much more fun than they are, tied to their mother. Now, I have not tried any of this, because I have not had any kids small enough to do it with, but it makes sense as that is the newborn-always-with-mommy idea... it's how monkeys learn.

    Meh, just thoughts...


  5. I so love the work you all do!

    Some thoughts off the top of my head... I have done something like this for a special needs child in reducing stim behaviour. First I tracked the undesirable behaviour for several days, tallying each behaviour (gagging, refusing to eat, tantrum) . Then you add 5 and this becomes your baseline. We used a band with elastics... but you could use a beads on a string. Each time the behavior happens you take off one bead. The goal is to have one left.... and then there is a reward. Maybe a ride on a special toy, 10 minute on the playground or a something he really loves to do (it should be the same and predictable). The goal initially is to have enough beads on the string so that he will not run out. Track this on graph paper. After 10 days of meeting that goal you remove one bead from the total number... and so on.

    Darlens would hopefully learn to associate the end of meal time with a desirable reward. If at some point he lost all the beads you just calmly don't give that reward. Your emotion about any of the undesirable behaviors is flat and you just remind him that he needs to keep one bead.

    I don't know how you plan out his food schedule or if this is even reasonable, but I would make a strict schedule at first of what foods you will offer and then stick to it. Maybe make a time frame and finish up after 10 or so minutes and schedule as many "sessions" a day as you need. The long term goal would be to have him be flexible and finish his meal... however, the short term goal would be to make meal time enjoyable with something desirable at the end.

    You would do this for each meal starting with all of the beads again.

    What I love about this is that it gives us the ability to see incremental change. Even if Darlens shows 30 negative behaviors every meal time, you could potential eliminate all of these behaviors in a year. One every ten days. It is hard for us to see 1 less out of 30, but this allows you to track and reinforce his improvement.

    Of course, I know that there is a very deep need inside of Darlens that needs to learn to trust and be loved, and his issues are complex... this is just a possible tool that might help in some small way.

    I will pray for you and Darlens in this!


  6. Praying for you and for Darlens, Anna.

  7. Back in January I send( through Agape flights) about 8 cans of Duocal, could you add this to his pedialyte ? It's flavorless and it would at least add some calories to it on the days he is not doing so great. Just a thought. Keep up the good work !

  8. I wish I knew the answers for you.
    I think it is just amazing that he has survived and that he now has you to care for him.
    But the utter hell he's been through... we just can't imagine how his little mind works.
    It may be that the pedialyte is the only thing that doesn't upset his stomach. Maybe digesting the other stuff makes him tired or gives him a belly ache.
    Poor guy.
    Hang in there.

  9. I brought a couple feeding pumps along from a little girl here in Omaha when we came. Is something like that a possibility? I'm guessing it's not an easy procedure to have the pump put in though? Just a thought. Man I miss that little guy. Hope he keeps things in for you!


Blog Archive