Lots of questions got answered, it was about an hour long and I'm sure we will have more questions as the time progresses. Basically I will start entering the meal times on Thursday, but as a watcher, just sitting in the room. We need a lot of things for home to do these therapies 3 times a day and it seems like it will be easier if I buy his foods in bulk, prepare them ahead of time, measure them on a scale and store them ready to go. So, maybe I'll need to devote like each Sunday for meal planning and food shopping for the upcoming week. In the beginning, we will need to feed Adam one on one for at least 6 months three times a day, preferably with two us around to "block" him if needed- especially in the beginning. We thought our days were hard when we had to bring all his tube feeds along! Now, we really must get 3 therapies in each day with him no matter what. So, we won't be travelling to anyone's housepartypajamajam or tourist attractions or having "date night" too often in the next 6 months.
Some other questions and answers we got were: There is no research based link or proof that he will have an eating disorder as an adult. His diagnosis is childhood feeding disorder and failure to thrive. They don't take into account that he won't like any of the foods, like they don't care, it is believed that since he is a new eater, he hasn't eaten enough stuff- like anything really- to know if it's good or not. Mealtimes are about teaching him to be compliant, use his lips, chew and swallow. They also said initially every new food he eats is confusing to him- like when you order a coke and you get flat sprite. You take a sip thinking it's coke and then make this face and are confused. He is confused all the time with anything new because it's all new, so he spits and reacts to that.
The last real important thing that was talked about at the meeting is that everyone that comes in contact with Adam and deals with food with him can not use any form of incentive or reward around any aspect of food. For example, you might be eating and offer him a bite of your cake. He most likely will say, "NO". It stays there. You can talk about how great your cake is, but you need to refrain from saying, "c'mon try it, we can go outside if you have a bite, or we can go play, or have a sticker if you eat this, or watch tv." Basically no incentive no reward of any kind no deal for a bite or taste of anything.
If he wants it, he'll eat it. Please continue to offer him food and show him how great it is to eat. Also (if you don't mind) encourage him to touch your food. It's an early step, and they explained that he won't ever eat what he won't touch. But don't bribe him to touch your food- no "deals".
Yesterday-Wednesday
Adam pulled new tricks.He took a day and regrouped for the counterattack. Now he's no longer aggressive. He's passively resisting. In those 3 feeds he did the following: Chewed forever- like a zillion bites, moved spoon slowly, smiled as he spit his food out, smiled as he spit food into his cup- into his hand and pulled his shirt up and spit it down his shirt. Each time he was met with them "forcing" the bite right back in, but it didn't stop him from trying. He also hid behind a toy to spit and took teeny tiny licks off the spoon.
I guess it's best that he's doing it all now, so we hopefully have seen all he's got before we are alone at home with these antics.
The psychiatrist was watching with me and commented that, since all these foods have been eaten fine with us here it's not the food. he knows these foods, that part was worked through last week. This is his personality now. This is him being clever and testing. This is all behavior. He's the kid that will come in at 10:31 with a 10:30 curfew.
I think she's wrong. Adam is the kid that will come in at 2 am after Phil and I have gone looking for him and called the cops with a 10:30 curfew. Matt is the kid who will be home at 9:45, because he was worried there'd be traffic, and 10:31 when he's really mad at me, for spite.
THURSDAY- today
I went in and fed him. Breakfast was long and I was unsure of parts of the steps and hesitated when I had to use physical guidance. Lunch was slightly better and the last meal was similar. I had help, but worked through: him vomiting, spit it out, playing with spoon, dilly-dallying with liquid, and dropping food on floor on purpose.
It's a start and I hope I'll get more comfortable tomorrow and this goes bit faster by September, or he'll be eating breakfast at 5am in September to give us the hours it's going to take to get these bites in!
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