Rett Syndrome Parent Tips: Feeding


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Claire has never wanted to be fed by anyone but herself, so when her finger feeding skills went away, she wouldn't eat. They didn't actually go away, they just degenerated into random, unsuccessful swipes at her food. After five years, her pincer grasp returned to about 80% of normal, but she does not have good utensil skills.

To improve Claire's chances of successfully feeding herself, we tried the following things (and many more, but there's no point in listing those here!):

  • Special plate and placement: We gave her an unbreakable plate with rounded edges. A microwave plate with three sections also worked well. This allowed her to try to scoop the food herself, and it wasn't a crisis when she knocked it off the table. We placed her plate on Dycem, a thin plastic/rubber type material often used by OT's, that gripped the plate to the table, so it wouldn't move as much. Rubber soap holders (with suction cups on both sides) or rubber squares (that you grip jars with to remove the lids) also work well.
  • Finger foods: We gave her finger foods that weren't messy and were easy to grasp. The cereal and snack food aisles at the grocery store are full of these types of food. Her favorites are: mini-marshmallows, pretzels, raisins, bananas, grapes, Cheerios, Apple Jacks, Froot Loops, Goldfish crackers, M&Ms. We put the food on a tray for her to snack from when she's hungry.
  • Bibs: We gave her a huge bib (homemade, but a towel will do). Again, no crisis if she spilled on herself. Special bibs can be ordered from Special Clothes for Special Children and Adaptations by Adrian.
  • Hand-over-hand feeding. We would guide her hand to the food, let her attempt to grasp a piece of food, then guide her hand to her mouth. We have repeatedly found that showing Claire's body how to do something helps her immensely. We weren't doing the grasping for her, just stabilizing her arm and hand so she could focus on her fine motor skills.
  • Supplements: We supplemented her diet with PediaSure, Ensure, and Instant Breakfast. This way, she could eat what she could feed herself, and we didn't worry about the nutritional content. Claire gained an appetite when she hit puberty, so now we give her low-calorie food and drinks (Crystal Light) and supplement her diet with chewable children's multi-vitamins and chocolate calcium chews.

Here's a tip from Christy Young:

"For the plate, there is a small plastic device available through most OT's. It is a semicircle that attaches to almost all sizes of plates. Travels well and gives all plates the "ledge" that the kids seem to need."


Tips: [Main] [Activities] [Clothing] [Communication] [Computers] [Drinking] [Feeding] [Games] [Hair] [Handwringing] [Medicine] [Music] [Sleeping] [Teeth] [Toileting] [Toys] [Transportation] [Videos]

Rett Syndrome: [Main] [Contact Us] [RS Site Index] [Calorie Boosters] [Claire's Story] [Cookbook] [Letter] [Tips]

Copyright © Deborah Schilling