Last summer, I was invited to have a booth at a community children’s health fair. In the promotional materials, I wrote a little blurb about how I am providing intensive, out-of-the-box services to meet family’s needs in a different way. I received a comment from a therapy professional on Facebook saying that I “can’t do that” and Pediatric Intensive Feeding Therapy “won’t work”.
Instead of asking why she wrote that, I responded with yes I can, and yes it does.
I am frequently reminded of just how “different” my thinking is when it comes to working with children with extreme problem feeding. As feeding specialists, many occupational and speech therapists have come to accept the insurance dictated medical model as the only way to approach treatment. This means that a child receives one or two times per week of in-clinic or home-based therapy. The therapist works with the child for nearly an hour at a time, tries to make as much progress as possible in the therapy window, and hopefully, gives the family something to follow up with before the next session. The child often does make some progress with the therapist during the session, but he or she learns to only “perform” for that therapist and will not repeat the same with family. This cycle of therapy can, and often does, last for years.
I know this cycle well, because I’ve been a part of it myself for more than 10 years. I still am, with my contract clients who receive services from the state reimbursement system. But when I started Kids Empowered 4 Life in early 2019, I had one goal when it came to feeding therapy: to completely change the model of delivery.
Pediatric Intensive Feeding Therapy Origins
How did I arrive at the idea that we needed to use a vastly different model to really move the needle? I’m not 100% sure. I think it was a combination of frustration over taking “2 steps forward, 1 step back” week after week, not being able to guide parents through any momentum we built during a weekly session, and a system set up to last for years upon years where everyone becomes complacent and accepts that there is no end in sight.
I once asked a client’s mom, “what would it feel like to discharge from feeding therapy? To be done, to have the goals met?” She responded, “I never even considered it a possibility.”
I decided that if I was going to implement some new ideas, they were going to be nothing like the current system. I did some research on all of the different feeding therapy methods and programs across the country, and then I combined evidence-based practices with admittedly radical, unproven, ideas. I discovered that some intensive programs exist in the hospital inpatient or outpatient setting. (Would you drop your kiddo at the hospital or clinic for a few weeks to learn how to eat without you? I wouldn’t either!) I did not find a program that delivered 5 day per week therapy in the home, with the family as the center of the “treatment” in a parent coaching model.
I also did some training to become a life coach, as I felt that being able to effectively coach a parent through major changes was just as important as being able to work with the child. Uncovering ones own fears and biases, as well as re-framing the current mindset, is critical for change. It is also important to know how to empower parents to do something that they are used to relying on someone else to “fix”.
In the spring of 2019, Pediatric Intensive Feeding Therapy (PIFT) was born. The structure looks like this:
- Minimum 6 weeks of short, 20 – 30 min sessions, 4-5 times per week in the home with parent or caregiver present for the duration and facilitating the changes
- Week-by-week guide of various other steps, including sensory play, oral-motor strengthening and hygiene, how to implement food chaining and other repertoire-building strategies, what to feed and how to progress, what to do about day care and school, and how to handle conflict with partners, extended family and other well-meaning adults
- Feeding log of what is working and what isn’t working shared between all members
- Access to me via text or email in between sessions
- Option to continue at the same intensity after 6 weeks, reduce to 2 times per week for a “maintenance” program, or discharge and take the reins
My Commitment: No Behavioral Principles
I have always felt strongly that eating is not a “behavior” that we must manipulate with rewards and punishments. Using pressure and manipulation techniques teaches children the wrong thing about eating. I am committed to NO behavioral therapy as part of my pediatric intensive feeding therapy program.
This means: no clean plate club to earn dessert, no threats for not eating, no reward charts, no trading of bites for time on the iPad, no forced anything.
If a child has been used to these techniques, I work with families to slowly move away from them. There is no one size fits all approach here, and I have seen many kids over the years that do respond to the iPad being offered as a reward for bites. The goal is to not rely on it all the time, or long term. The goal is to help children develop a healthy attitude about food and eating, and to figure out what their body needs and when.
This is the most liberating part of Pediatric Intensive Feeding Therapy!
Pediatric Intensive Feeding Therapy: My First Client
With my program set up, and my “mission” ready, I just needed to get my first client ready for my “radical” new ideas. I quickly found someone in our area who was struggling hard, and ready for a change. The only way to know if a program works, is to dive right in and deliver it! I began working with my first client in the summer of 2019. “Ian” was 5 years old, autistic, and only eating yogurt, cookies, and some crackers. He drank Pediasure, but only vanilla flavor. You can probably guess that he was underweight. He was at risk for a feeding tube, and while he had received once weekly feeding therapy off and on for about 2 years, his parents knew he had to start making some progress soon if they wanted to avoid a tube.
I worked intensely with Ian all summer, for about 10 weeks. We used a lot of food chaining and exposure methods, building on what he already knew and liked. He was never forced to eat or try anything. His parents and caregivers were on board and followed through with suggestions all throughout the day.
During the 2.5 months, we increased Ian’s food repertoire to include almond butter on cookies, cream cheese, hummus, and guacamole on crackers, small bits of banana, pea crisps, pita chips, pudding, toast, avocado, goldfish crackers and deli turkey and chicken (on a cracker with cream cheese). As school was resuming, Ian’s parents used all the tools and methods we had worked on together and took the reins. We went back to weekly check-ins, and by Thanksgiving, he was accepting waffles, toast with almond butter and jelly, mango, larger bits of banana, and various granola type bars.
I knew that focusing on his feeding daily made a huge difference in the outcomes. I also knew that NOT using rewards and bribes had a part in the progress. He wasn’t looking for those things. He just accepted that this is what we did now, and it became part of his routine. He adapted to the changes quite fast!
What Makes Pediatric Intensive Feeding Therapy Different?
Besides the obvious intensive frequency of sessions in a shorter time frame, I built this program using out of the box thinking.
From a therapist perspective, I considered how I could be most effective to families the fastest. Traditional insurance models made therapy drag on forever, with slow results. I decided to use a system where I could be there for my clients as much as they needed me. Physicians may call this “concierge service” where a patient pays a certain amount for unlimited access. I had to limit the number of clients I could take at a time, so I could continue to provide as much help as they needed. I rejected the behavioral model and embraced Ellyn Satter’s Division of Responsibility fully. I believed that even the toughest problem feeders could thrive with strength-based principles, and family centered practice, rather than treating the issue as a medical “dysfunction” of just the child.
From a client’s perspective, I realized that I would be “in their face” a lot at first but for a short period of time. I needed to establish rapport with my clients fairly quickly. I needed families to see that I was not going to come in and “fix” their child, so they would have to be on board, doing the hard work, and willing to throw some previously held ideas, such as behavioral principles, out the window. The parent(s) would be doing most of the actual feeding under the parent coaching model, so having a strong rapport and trust from the start was important to me. I do this by meeting with the family before I even evaluate the child or take them on as a client. We need to see if we are a good fit and share a growth mindset for making positive changes.
Ian lived nearby and, as it was pre-COVID, I was able to go to their house for all of the sessions. Subsequent clients, and COVID, have allowed me a farther reach with clients not in my immediate area via teleconferencing platforms. A lot of families have had to switch all of their therapies to Zoom calls, but for PIFT, it is actually seamless and works just as well!
Do Pediatric Intensive Feeding Therapy Results Last?
I have not done a study, and I’ve had just a handful of clients, but I can say that I’m very encouraged by the results so far. None of the kiddos that I’ve worked with have regressed after cutting back the intensity. All of my clients have opted for 8 – 12 weeks of intensive sessions.
Two to three months… versus YEARS of weekly therapy to make significant gains and jump start the process! I give parents all the tools and support they need to be able to continue. They all say that they feel like they know what to do.
My next steps will be to gather more data with clients to establish significant evidence. Would you like your child to be a part of the Pediatric Intensive Feeding Therapy program? I am VERY confident that you will see changes faster than you thought possible! If you live in California or Arizona, fill out my Pediatric Intensive Feeding Therapy Questionnaire and I will reach out to you for a chat!