Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, November 03, 2012

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.

1 comment:

Amy L said...

OMG! I need to more about this. Liam will not eat anything, except yogurt, oatmeal, refried beans (rarely), pudding and baby bananas. That's it! He will only eat the refried beans if he is very hungry. He won't let anything near his mouth if it doesn't "look right."