Sunday, January 07, 2007

update on O's feeding program

For those of you who read a previous blog entry (or saw the video clip) of Owen doing his feeding program, here's a little update.

For a child like Owen, he has a genuine fear associated with food and with the whole feeding experience. We are not entirely sure how much of it could be fear based on experience, or sensory aversion (getting freaked out by smells, textures or colours of food), but all we know is that he doesn't eat. His diet right now, is restricted to 5 foods, if that.

He only drinks milk and fortunately for us, after nearly 6 months of trying, we are now able to add 2 1/2 oz. of Ensure to his milk so he is getting at least one can a day. If it weren't for that, he would be severely malnourished. Since the Ensure, he has put on weight and his general health is pretty good compared to before we moved here. He is currently being supervised by a pediatrician and we are waiting for our appointment (6 months) into the Children's Hospital Feeding Clinic. We've spent the last couple of years seeking advice from doctors, pediatricians, occupational therapists and a nutritionist. Suggestions have ranged from giving iron supplements which would boost appetite, reduce the milk intake, force the food on him, hide food within what he already eats, add Ensure, etc. Nothing has worked. With Owen, you can't rationalize anything with him - he doesn't understand. So bribery doesn't work. You can't hide food in the food he likes, because the SECOND you try, he knows. The result is that he will never go back to that food again. He now has a distrust of it and of you. Forcing food on him is torture. His cries are not an issue of compliance, but of genuine fear and upset. Forcing food or vitamins, or medications, means that he will no longer let us touch his face or head (even to wipe his mouth), rest a hand on his head, brush his teeth, etc. We've lost his trust. And if you force medication on him, he will then starve himself for weeks on end afterward. Unlike another child, who will eventually give in or quit being "stubborn", by eating whatever is available, Owen will not. He will stick with the milk and may even reject that. You can literally hear his little stomach growl while he eyes the food on the table, and gagging at the sight of it, all at the same time.

I have had so many people tell me what I should be doing about this. I appreciate the suggestions, but honestly, we are now at a point where he is finally eating the few foods he does like and he is putting on weight - this in itself is a HUGE accomplishment after watching him whither away to skin and bones.

It may not make a lot of sense to most of us, to have a child 'play' with food in order to work towards having them eventually eat something new. It is a painfully slow process (as was the introduction of Ensure.. milliletre by milliletre, day by day). Each day during Owen's therapy, his aides bring him into the kitchen to play. Foods such as yogurts, jellos and juices are what they have started out with. There was a time when Owen would not even tolerate it being on his placemat. Over the last 4 months, he has moved on from adding food colouring, burying and retrieving articles in the substance, finger painting with it, using a spoon to scoop and touch it to his nose, his cheeks and finally his lips. Just last week Owen was introduced to grapes and he is even allowing it to enter his mouth (without touching his tongue). There is zero expectation for him to taste or eat the food, but just to familiarise himself with it. To get comfortable with it. On Fridays at their nursery school, every child takes a turn to bring in their favourite snacks for the other kids. Needless to say, in a class of children who all have autism, there isn't a lot of variety on these snack days. Owen is definitely not the only one with feeding issues. This experience, however, has enabled the kids to touch each other's food, to watch their friends eat and the hope is that eventually they might want to copy them and try it out themselves.

Owen will gag at the sight of a lot of food and even tools in the kitchen. I don't think I really noticed it before. Until we started this program with him I don't think I had ever really presented him with many opportunities to 'play' in the kitchen before, so I never noticed. His aides now have him spreading peanut butter on bread and stirring juice mix. It's very exciting for us to watch.

I am trying to make more of an effort to include Owen and Will more in the preparation of food. ONLY if they are willing. Jake is already my little helper (funny how it's usually only when there is baking involved!). Before Christmas, we baked some cupcakes. Owen wasn't keen on touching any of the ingredients, but he was very proud of himself when he discovered that he could play a small role in placing the cupcake liners in the tray - over and over again. I am proud of him and his aides and can already see the great gains he is making in this area.

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