There are 17 million people around the world with cerebral palsy. A further 350 million people are closely connected to a child or adult with CP.
“Many children with CP have eating and drinking difficulties. These range from relatively minor difficulties in coordination of oral movements causing eating to be slow and with excessive spillage, to severe incoordination of the swallowing mechanism, causing ill health and even life threatening conditions. Mealtimes may stretch up to 15 times longer than for other children…and even despite this lengthy eating time, the children often do not receive adequate nourishment. Bax (1989) found that 20 per cent of the children with CP in his study were severely underweight or badly nourished due to eating and drinking problems. This represented half the children who had eating and drinking problems.”
Challenges of Feeding
As a parent of a child with disabilities and a Registered Dietitian my goals are to provide Jake as many tools and resources to allow for maximum independence; while providing nourishing meals. Through mistakes, observations, experiences and the help of very wise health professionals we adapted our environment to achieve these goals. Lately, I've noticed the goals need to be revised as Jake gets older.
1. Utensils were not used in our home for a long time, except when we had guests over. Jake and I ate a lot of finger foods. It was difficult for Jake to hold the utensils. As I watched Jake get older, I noticed his muscles getting tighter. He now asks for help in feeding – most of the time.
2. For drinking, we use a weighted cup base, this is to prevent spills. We would place a cup inside with a flexi straw and Jake would be able to drink on his own and whenever he would like. Lately, I've noticed a lot more spills.
3. Jake loves to dine out and have dinner parties. I never had to worry about getting him to try new foods. Jake is a culinary explorer.
4. I love his understanding of food and nutrition. Jake has a wonderful sense of taste, as he combines different flavors. He creates meals based on colors, designs, and nutrition.
Living with Cerebral Palsy