On Eating

When we chose Asher, we knew that he was not able to eat anything beyond pureed foods. Now, when you're told this by orphanage staff it's hard to know if the child isn't ABLE to chew, or if they're not given the opportunity to chew. For example, when I brought yogurt to feed him during our visits, the nurses put it on the radiators to warm up because he had a "sensitive throat" and couldn't have cold things. This was also the reason he had pureed only foods. In reality he had never had yogurt. In addition he had tonsils that were overlapping and there wasn't ROOM for food that wasn't pureed to applesauce consistency. He'd never had an opportunity to learn to chew, and other than using his tongue as a lower lip it was completely non-functional. It was nothing more than a hunk of flesh sitting flaccid in his mouth. Watching him eat I knew it was going to be a lot of work to get him chewing.

I had no idea it would take well over a year of daily work - and frustration - for both of us. I said "over a year" because we're coming up on one year home and we're not there yet. In fact, we have a long way to go.

Many years ago, Angela had a feeding tube. She was able to eat solids but she could not have any liquids by mouth. Even liquids thickened to pudding consistency could be a problem for her to swallow safely, so all liquids were given by g-tube. After several years of intensive occupational and feeding therapy we finally had a swallow study done at age 3 1/2 and she was able to swallow regular thin liquids without any problem. Ok, that's great!!! Now we needed to get her drinking enough to prevent becoming dehydrated. Because that wasn't something she was used to, it was very slow in coming.

Finally one day I had a moment of clarity. Angela was getting all her liquids tubed so she wasn't thirsty. What would be her motivation to drink if she's not thirsty? I decided the "sink or swim" approach was worth a try. I wouldn't give her any liquids by tube for several days, allowing her to develop a desire for liquids. (FYI our feeding therapist and doctor agreed with my doing this since 1) we knew she was able to swallow safely and 2) if she were to get dehydrated I could easily tube her. In other words, there was a safety net in place) This worked fantastically and we never went back to the tube again! 6 weeks later we hadn't used the tube even once and were able to remove it. We never looked back!

So here is Asher. In therapy sessions he is now able to chew many things. It doesn't quite look like the way you or I chew, but it is effective enough. He still needs very close supervision. When he first came home he had no awareness that things in his mouth were too big for swallowing. He also had NO gag reflex at all. You could give him a bite of cookie and cookie and he'd put it in his mouth and attempt to swallow it whole. As we learned this there was one ambulance call and several other very close choking episodes!

The dilemma I'm having with Asher now is similar to when Angela was transitioning to oral liquids. He is able to chew but he has no desire to eat anything that isn't pureed but instead requires work on his part. I think it's time for the "sink or swim" method for Asher. . Its my opinion that he needs to get hungry in order to WANT to put effort into eating. I don't know if I'm right, so I asked his feeding therapist if she thought he was ready for this.  She agreed that it was worth a try. This weekend the food he's been offered has required some chewing.

Ummmmm We have a standoff.

As soon as the food is put in front of him he goes "blank" and completely shuts down. I know that a post institutionalized child can hold out much longer than a typical kid. He needs to have control over his environment and this is one area he can. Its a touchy situation. He needs to know we won't let him go hungry but he also needs to know he has to eat.

Please say a prayer for both Asher and I. For Asher that he can progress to the next level, for me to have patience as we work our way through it. Also, for guidance for me to work through these stages with compassion as I guide him through this area of development.

School Lunch

Asher is in Kindergarten. He is in a regular classroom and is just one of the regular kids. Today, to get a "taste" of 1st grade, the kindergarteners are eating lunch at school. I've been really tempted to just keep him home. He's so NOT ready to be eating at school yet. We're working hard to get rid of his very bad oral motor habits. Him feeding himself is a horribly messy scenario and I don't want him stigmatized at school for the way he eats. I'm so tempted to keep him home. He's not going to first grade next year anyway. Hmmmmm Decisions. Decisions.

Houston, We Have Lips!

Five months ago today Asher and I stepped off that last plane and our new life together as a family began. The journey to get Asher eating safely - and relatively normally - was one of the first things on my agenda. There are lots of videos in this post but I promise I tried to only post the shortest ones!


Asher was feeding himself in the orphanage, but his technique left much to be desired, plus he at in that super-fast orphan speed, afraid the food would get taken away. I decided to feed him myself for a couple different reasons. There is the whole bonding thing, him learning that he CAN be dependent on someone else, and it's not a bad thing. Then there is the forgetting part. Forgetting how he used to do it so he could relearn a more appropriate way to eat.

This is Asher eating the first week home. His tongue was still huge from years of sucking on it. He did use his lips more than he does now, though not effectively. Mostly his tongue acted as his lower lip.


Then there was that first time I gave him finger foods. Poor kid thought I'd lost my mind, I'm sure. Nobody had every let him touch his food before! Couple of things to point out: 1) his fine motor skills wee about 6 months at this point. 2) he has a hard time getting food IN his mouth. 3) He uses his whole hand to keep the food in since he doesn't know how to close his lips.


And oh the oral motor work we did! I look back at this video and he's still such a baby! Just 5 months ago.


There was the day I decided to teach him to sign "more". Oh how he cracked us up when he didn't want to do something. "I can't see you so you can't see me!" HA! Funny, we don't see this little bit of spunk anymore. (excuse the mess in the background, we were getting ready to remodel. Remember that nightmare???? UGH)


Then there was the day I taught him how to use a pincer grasp. He wasn't very happy with me, and it was HARD work!


A few weeks ago we started feeding and speech therapy. He has 1/2 hour of feeding and 1/2 hour of speech each week. (two separate sessions with two different therapists) First we worked on initial biting.
This video is kind of long. The first few seconds you'll see what progress he's made! And gone is the wild boy who needs to be contained in a high chair! LOL


And here is today! Two days ago, after watching the feeding therapist and getting ideas of my own, I went back to spoon feeding Asher myself. I wanted that tongue IN and him using his lips. I knew he was capable of it, but until I observed the feeding therapist didn't really know how to help him. Yesterday I changed up what I was doing, and here he is at lunch today!


My plan is to to feed him myself for a month, let him develop some muscle memory (and basically forget what he used to do with his tongue) then let him start feeding himself again. I'm so proud of Asher and how far he's come. I think his teacher would be pretty shocked to see videos of the "baby" we had here just 5 months ago!

Eating with Asher

If you don't follow me on Facebook, then you missed the excitement that happened on Monday. I had just given the big kids left-over Easter dinner, but Asher had that for lunch so I gave him spaghetti-O's instead. (since that's highly nutritious!). I always chop up the meatballs because..well...Asher doesn't chew. At all. Instead he mashes stuff up into his very high palace or just swallows it whole.

So the kids are eating and I am not paying attention. I turned around to see Asher with his head turned extremely far to one side, his jaw jutting out, and his color turning a not-so-nice shade of gray. "He's choking!" I hollered to Dean.

I did a finger sweep but there was nothing.

He was moving a little bit of air through his nose but none through is mouth so I didn't want to do anything else in case I caused whatever it was to block his airway completely. I watched him for a minute. He was trying to gag but all that did was cause spaghetti-O's and TONS of mucus to shoot out his nose. His color continued to get worse. Although he was moving air, he wasn't moving enough air. I called 911. I think Dean thought there wasn't really a problem until I decided to call for help.

Right about the time the paramedics arrived, Asher vomited up a whole meatball. Being about 1 inch in diameter they are perfect choking size.  It took about 15 minutes for his color to go back to normal, but the paramedics declared him "good", though they suggested bringing him to the ER to be evaluated. We were in and out of the ER in an hour! (that is record time folks!)

Two days later Asher started sneezing copious amounts of thick green snot, and whenever he eats he's sounding really "junky" in the back of his throat. I brought him to the doctor and it seems he has some infection due to the spaghetti-O's getting stuck up there. Poor kid!

Anyway, Asher is making slow-but-steady progress in the area of eating. We can now get initial bites and sometimes he'll even follow with one or two chews. We're still ages away from him being able to eat food that does not require chewing. Right now we're sticking to dissolvable foods like corn puffs, cheetoes, etc. All healthy stuff, to be sure! I have a goal in my head of having Asher on regular foods by September when he starts 1st grade. It's a lofty goal, and probably way off base, but yesterday he was doing particularly well with some corn puffs! He takes initial bites now, and sometimes one or two chews, then he's back to just mashing it against his palate. Still, this is progress! (these are "dissolvable" corn puffs, which dissolve to almost nothing in your mouth)