Blake's Journey One Bite at a Time
By Jocelyn Warren, OTR/L
Feeding disorders are a common problem in children. Review of studies has shown that between 46% and 89% of children with autism spectrum disorders have a feeding disorder. Food selectivity or refusal, disruptive mealtime behaviors, and rigidity with mealtimes (only eat from certain bowl, have to sit in certain chair, etc) are among the commonly reported concerns. The University of Louisville Autism Center at Kosair Charities provides feeding therapy to address these issues.
Blake’s Journey with feeding therapy began in 2011. Initially he was seen at the Weisskopf Child Evaluation Center for an Interdisciplinary Team Feeding Evaluation. His parents were concerned about Blake’s feeding as he had frequent spitting up and had an extremely limited diet. His diet consisted of Lay’s original potato chips, licks of peanut butter, smoothies (mixture of his medications, baby food, and juice), and only a few varieties of Stage 2 baby foods. Blake was also limited in his acceptance of drinks as he would only drink water, soy milk, and 7-Up. During the evaluation, Blake was evaluated by a Dietician, Occupational Therapist, Psychologist, and a Speech Language Pathologist. Blake had many issues with feeding that are commonly found in children diagnosed with an autism spectrum disorder including limited food variety and rigidity with feeding behaviors as he would only eat one brand of potato chips (what is it with those Lay’s potato chips???) and would only drink his smoothie from one particular cup.
Mom’s Story of Blake’s Journey
Speaking for myself, I can honestly say that Blake’s feeding issues have been more painful for me than Blake’s diagnosis of Autism and being nonverbal combined. Not only was I dealing with the feelings of being a failure as a mother because of the guilt I was experiencing at what my child was eating, I was also criticized by family, friends, strangers and even the autism community. In addition to his sensory issues and his rigidity, Blake would also vomit at the site or smell of food to get away from the table. Blake’s behavior therapist once gave me the superhero name of “The Excrementorator,” and I have to agree that I had earned that title! I feel certain that I had cleaned vomit up in every inch of my house and car, but also restaurants, Memaw’s house, department stores, etcetera.
When I sought Jocelyn Warren (Occupational therapist) for feeding therapy, I felt defeated and had up hope. The process of introducing food and having Blake interact with food seemed impossible. I had tried feeding therapy once before, but it made things so much worse and his behavior was off of the charts. I had never won a feeding battle with Blake, as it was one of the few things he had complete control over.
After a lot of vomiting and finally finding a positive reinforcer, Jocelyn started to have successful sessions with Blake. Unlike therapy before, Jocelyn allowed me in the therapy room and she let me “take the spoon.” I was finally finding the confidence that I so desperately needed to be successful with implementing his therapy at home.
I started to realize after a short time working with Jocelyn I had enabled Blake’s avoidance of food by allowing him to escape when he would vomit. Not only did I enable his behavior, I feel certain that he was also picking up on may anxiety due to terrible past experiences with food. Once I practiced allowing Blake to vomit while continuing on with the task at hand, he stopped vomiting to avoid the task. I felt my anxiety decreasing and I feel certain that it did for Blake as well. Blake does, however, continue to vomit due to sensory issues with new textures, but that was nothing compared to what it was like before.
In closing, there was nothing easy about feeding therapy and there’s no way to candy coat vomit! I cannot begin to tell you how wonderful it feels to make progress. I hope others affected by these issues will hear me when I say, if MY son can do this, ANYBODY can do this and to never give up. Once I came out and started discussing my son’s issues with others, I have found that so many people tend to hide these issues. I completely understand and I hope that you will seek help for your children and let go of the guilt and shame. There are a lot of us out here.
Therapists Story of Blake’s Journey
After Blake’s evaluation, his mother and father and I worked together to determine our main goals for Blake. We decided that decreasing his vomiting and getting Blake to no longer relying on baby food for a large majority of his diet would be our first goals. Several behavioral strategies have been utilized to help Blake meet these goals. Positive reinforcement and sensory desensitization are the main techniques that have been used for Blake. Initially our goal was to help Blake be more flexible so that he could accept food that was very similar to foods that he already ate but slightly different. We focused on introducing new flavors of Lay’s potato chips (who knew that Lay’s has 20 flavors of just their regular potato chips?). Blake was soon eating Lay’s Barbeque, Sour Cream and Onion, and Cheddar and Sour Cream flavored chips. The importance of his progress was not that he can eat different flavors of chips (nutritionally this did not add anything to his diet) however Blake was becoming more flexible with his eating. During this time we also worked on Blake being able to eat the chips not just from the original bag, but also on a plate and from a plastic bag as well as him being able to drink his smoothie from a regular cup.
We used positive reinforcement and sensory desensitization to achieve these goals. Every time Blake took a bite of a newly flavored potato chip or a drink from a regular cup he was rewarded (positively reinforced) with a favored food/drink (Lay’s classic potato chip, drink of 7-Up) or a brief time playing with a preferred toy/activity (tickling, singing song, swinging on the therapy swing, looking at his favorite book). As it became easier for him to take bites of the newly flavored chips, he had to take more bites to earn the reward until finally he no longer required rewards to eat these new foods. Utilizing sensory desensitization was also used simultaneously with positive reinforcement. Initially Blake would become upset when he saw me bring the newly flavored chips into the therapy room. Our first goal was to touch the chip (pick up the chip and put in the garbage can), then we transitioned to touching the chip to his lips, then teeth, then tongue, then back molars, and finally taking a bite. Depending on the child, this might take only one session to move through these steps or it can take several weeks. Blake required several weeks to move through this process and there were frequent upsets, gagging, and vomiting (just a quick note about vomiting, in Blake’s case he was being followed by a Gastroenterologist so we knew that the vomiting was not related to a medical issue but was more behavioral so the vomiting was ignored. It is only recommended to ignore vomiting if it is clear that there is no medical reason). Blake’s family worked on these skills at home, so soon Blake was eating new flavors of chips in many different environments including home and school.
Our next goal was to get rid of the baby food. We focused on adding applesauce, yogurt, mashed sweet potatoes, mashed potatoes and gravy, pureed fresh fruits, oatmeal, and other types of smooth textured foods. We also wanted to add a vegetable/fruit juice (Capri Sun Super V, Fruitables, V8 Splash) to his diet. We continued to use positive reinforcement and sensory desensitization techniques to increase his acceptance to these foods. Blake was very sensitive to the smells of new foods as well as looking at new foods. I learned this the hard way when I brought in a very small bowl (about 1 tablespoon) of refried beans into the therapy room. Blake was busy playing on the therapy swing and immediately began to gag and throw up before he even saw the food item. His mother and I decided that we would just put the new food on the table during the therapy session and Mom would put the food item on the kitchen counter at home for one week before he was asked to even touch the food. It was a huge celebration when Blake came to therapy and his mother shared with me that she had donated boxes and boxes of baby food to a local charity as Blake was eating so much of the smooth textured foods that he no longer needed the baby food…and best of all he wanted the regular food.
Our current goal is to add more textured foods to Blake’s diet. He is eating fork mashed fruits, fork mashed vegetables, fork mashed stews (he loves his Mom’s beef stew), cereal crumbs, bacon crumbs, mashed rice, mashed noodles, mashed hot dogs, and many other items that are of mashed or crumb textures. Blake still continues to struggle with taking a bite of harder textured foods such as a piece of fruit, meat, or vegetable but his progress has been steady. It was also a huge celebration when Blake was able to eat his first Christmas dinner (turkey, mashed potatoes and gravy, and sweet potatoes) with his family.
Blake has made so much progress as his family is able to follow through with these techniques in the home environment and do so at every meal and snack. It is so important for families and therapists to work closely so that the techniques used in the clinics can be used in the home environment. Blake continues to attend feeding therapy one time a week. With his hard work and his family’s effort, we expect Blake’s journey to continue to move forward at a steady pace.
If you are interested in learning more about understanding the common issues of feeding problems for children with ASD, strategies/techniques to utilize at home to expand food variety and when to seek professional help watch the Techniques to Expand Food Variety for Children with ASD webinar by Jocelyn Warren.
Jocelyn Warren, OTR/L is a Senior Occupational Therapist at the University of Louisville Weisskopf Center for the Evaluation (WCEC). She graduated from The Ohio State University in 1989 and received a Masters in Special Education from the University of Louisville in 2011. She has been a Senior Occupational Therapist at the Weisskopf Child Evaluation Center (WCEC) for the past 12 years. Jocelyn initiated the development of the Feeding Disorders Clinic at WCEC in 2003. At WCEC she serves as a team member on interdisciplinary team diagnostic evaluations, completes individual occupational therapy evaluations, participates in feeding disorder outreach programs, and provides intervention services. She has presented at state and national conferences.
KY Autism Training Center Winter 2013 Newsletter February 2013