PCDA Part One

During our transition meeting with Los Angeles Unified School District, and Regional Center, Kyle’s special education teacher empathically stated that she thought Kyle needed to receive feeding therapy at PCDA. We had tried to contact them previously but we were unsuccessful. Our new service coordinator contacted them and got us an initial evaluation.

We went in and met a pediatrician, a nutritionist, a speech and an occupational therapist. Kyle and Tara were both with me. They asked the usual questions about Kyle’s eating habits. At one point, Kyle was due for a snack. The nutritionist asked if she could turn on the video camera. I agreed and tried to get Kyle to eat a banana, a previously favored food. He refused so I offered it to Tara. Kyle drank his shake quietly while we finished the evaluation.

The results were similar to all the other reports:

Kyle had an open mouth posture and was noted to drool throughout the evaluation. He has difficulty processing sensory information that is impacting a number of skills including eating. He is resistant to solid food in general and is particularly sensitive to the texture and taste of food. Kyle does not like to engage with a number of edible and non-edible textures such as sand, play-doh, and paint. He does not like clothes to be put over his head and certain clothing textures bother him. His refusal to accept solid foods appears to primarily be related to overall rigidity and inability to modulate the sensory properties of food. It is anticipated that his oral motor capabilities would allow him to manipulate a wide range of age appropriate foods. However, his low tone, and probable difficulty with motor planning may be impacting his ability to manipulate certain textures of food.

We started therapy twice a week in May 2006. Each session was one hour long. PCDA has little kitchens throughout the center. Julie Miller, the occupational therapist, assigned to us was easy to talk to and knowledgeable. At the time, our meals mainly happened in the car. I needed her to understand what our home life was like to help guide our therapy session and her suggestions.

If you don’t have a child in your life who does not eat, you probably think eating is a simple process. Not so. Eating consists of many steps that most of us take for granted. We started playing with food, tapping it, touching it, kissing it and licking it. Sometimes we had two taps, and three licks. Other times, we had three taps and five licks. Kyle was allowed to choose. Julie would say, “Do you want three taps or five?” He had to feel like he was in control of what went into his mouth.

Progress was slow. The goals were small and didn’t necessarily involve eating at first: “Kyle will explore new food items using therapy assistance with moderate verbal assistance.” and “Kyle will demonstrate the ability to appropriately blow 3 of 4 different types of whistles so that the note is sustained for at least 2 seconds 80% of the time.” I can remember thinking “What the heck does any of this play have to do with eating?” But I trusted Julie. I trusted that she knew what she was doing with Kyle. When I had a question, she explained the answer to me but never talked down to me. She gave me extra resources and information for me to research. I reported progress at school and home to her. Julie even drove to Kyle’s school, observed him during snack time, spoke to the teachers, and made suggestions for improvement. She celebrated with me when Kyle started chewing licorice, and licking yogurt. In four short months, she accomplished more than the other therapist. Everything Kyle ate or tried in the therapy situation, we were able to duplicate at home and school.

Then funding for feeding therapy was not renewed after Kyle’s third birthday. All progress stopped for Kyle.

Please see PCDA Part 2.