Monday, December 02, 2013

MASON FINDS HIS SPOON (Or, "Hooray!! Our child with dual sensory loss is learning to eat!")

Learning to eat solids is a messy venture for anybody. Imagine trying to learn while not being able to see or hear very well, having major sensory issues including an aversion to touching anything new with your hands or mouth, not even really associating food with hunger relief (since you've been nourished mainly by formula through a tube in your stomach for basically your whole life) yet you still have the independence of a 3 year old. THAT is a recipe for a mess!

Mason has always hated to be fed. I mean hated with a capital H. Even though it seems like the taste of food is not so bad once it's in his mouth...he hates to have food arrive in his mouth unpredictably. Even with touch, verbal and scent cues that food is going into his mouth on a spoon, if someone else puts the spoon in, he finds it disturbing. So, we have made very little progress because we have always been trying to either get him to let us feed him (by giving him enough warning) or by getting him to pick up his own spoon and do it himself (because we have always felt strongly that if he were in charge of the process, he would tolerate eating much better. Who would want food to just show up when it wasn't welcome? So far he doesn't pick things up intentionally; if he does, it's experimental and the next moment the spoon is tossed messily onto the floor when he realizes it's still in his hand.

So how do you go about teaching a child with very low vision combined with oral and tactile aversion to feed himself without holding the spoon himself?

Today, Mason showed me how to start!

Rather than try to put the food in his mouth myself, or get him to hold the spoon, I just held the bright-colored spoon still in front of him, where he could find it himself by scent, touch and residual vision. We have tried this in the past and he just arched backwards in disgust (he doesn't like even just sensing something new or different near him.) But today...he was ready! He CHOSE to go for the spoon! He found it, he took the food off, and he went back for more, over and over! He isn't going so far as to swallow much of the food (you'll notice he spits a lot of it right back out once he gets it in his mouth) but we'll take baby steps! He is repeatedly, voluntarily, eating off his own spoon and not protesting about it! This is huge for him! We are SO thrilled he is leading in this way!!

And though we have a very long way to go, here is a list of strategies that have helped us get to this point:

  • Bright colored and/or vibrating spoon (to help him locate it)
  • Soft spoon (rubbery not metal or hard plastic as he balks at "hard" things)
  • Flavors that are not too intense and tend to help his stomach/reflux feel better afterward (oatmeal/pears and savory tastes work best for Mason)
  • Taping a lollipop to his bib to let him "discover" it himself
  • Exploring purees on a clean tray (this is messy but lets him figure out that food tastes good and he can put it in his own mouth by licking off his hands)
  • not force-feeding - rather, letting him lead
  • letting him do things that are familiar/safe during food time (listening to his favorite music, etc)
  • a generous helping of praise for even small steps of progress
We welcome any other strategies that have worked for you as well! Thanks :) Now just pray that the food he does eat, he tolerates! (This is always the next battle as he has bouts of out-of-control secretions several hours after eating by mouth sometimes; we don't know if this is allergic (his tests show no allergies), reflux-based or aspiration related (but he always passes his swallow studies with flying colors), or coincidental viruses; but next to his aversion, these secretion episodes are the biggest hindrance to progress in eating by mouth because we just don't know what they represent. Anybody with insight please share :)

Mason's Mix

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