My child needs a Feeding Tube!? Going home with a feeding tube shouldn’t be rocket science!

Published by Melissa Anderson, RDN on May 01, 2021

Hearing your child needs a feeding tube is scary in itself. Realizing you’ll be expected to use this tube at home, without a medical professional, can be terrifying! With all the new skills to learn and instructions to remember it can be very overwhelming for a parent or caregiver. At first, the act of tube feeding a child can seem more complicated than it really is. Don’t get me wrong, there is a learning curve. However, once you learn how to safely use a feeding tube, it becomes easier the more you do it.

To start off on the right foot, it is important to have a good support system. This includes a helpful durable medical equipment (DME) company. As a dietitian for such a company, I have seen and helped countless families navigate the unfamiliar territory of learning how to operate a feeding pump. My job is to educate the patient and family regarding their feeding order, review what kind of equipment is needed and show them how to use it. I go over what to expect at home, possible complications and when to reach out for help.

I’ve had families ask me countless questions, families who have videoed me teaching them so they can reference it later, and some who have written pages of notes to help understand the process. There is no wrong way to learn! It’s a success if, after I’m finished, each person feels confident they can replicate the process at home. Nearly everyone I have met is a little nervous about the situation. That is a completely normal feeling.

We offer ongoing support throughout the whole process and that tends to help relieve some of the apprehension for most families. It’s important to find a DME company that has continual support like our 24-hour nurse help line, because more often then not, questions will come up once the family is home.

Tube feeding isn’t a one size fits all. There are so many different regimens and formulas as well as many different home life situations. I have not met two families that are alike. Each family has their own way of learning and that’s what makes my job so fun! There is no greater feeling for me than walking out of a patient’s room, knowing I made a difference in that family’s tube feeding journey.

Melissa Anderson, RDN
Clinical Liaison
Aveanna Healthcare Medical Solutions

Volunteer Spotlight: Courtney Long

Published by Feeding Matters on Apr 01, 2020

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Courtney Long.

Tell us a little bit about yourself and what you do.
I currently live in Albuquerque, NM with my husband, recently adopted and amazingly spunky two year old and our cat. We are foster parents and outdoor adventurers. I currently run an outpatient feeding and lactation counseling program in the area targeting support and collaborative care for infant through adolescent populations.

What motivated you to become involved with Feeding Matters?
Awareness and advocacy for pediatric feeding disorders is dangerously low. I wanted to work with an organization that understood our problem and was motivated and diligent in trying to repair it.

How have you volunteered with Feeding Matters?
I perform outreach for PFD in my community and support ambassadors in my region in their efforts. Additionally, I currently serve as a content expert on the L.A.C.I program.

What has been your favorite part of volunteering with Feeding Matters?
I love the brainstorming and collaborative effort to support our children with PFD adores the nation. The multidisciplinary team is incredible.

What sets Feeding Matters apart from other organizations?
There is a continued effort to keep up to date with research in PFD, to continue to spear head research of their own and to understand new and evidence- based practice to best serve families.

Feeding Matters funds clinical tool research project

Published by Feeding Matters on Feb 14, 2020

Feeding Matters launched its small grants program in 2019 to support the growing need for research on Pediatric Feeding Disorder (PFD). The initiative was led by the Granting Research Committee as a part of Feeding Matters’ Pediatric Feeding Disorder Alliance. The committee’s goal was to advance the PFD field by granting funds to researchers who proposed studies that fill the gaps in PFD research. The committee is delighted to support researchers Paula Rabaey, Ph.D., OTR/L and Kate Barlow, OTD, OTR/L on their project. Their study seeks to address two specific research questions: (1) To what extent do current assessments by feeding clinicians address the four domains of PFD? (Medical, Nutritional, Feeding Skills, and Psychosocial Factors). (2) What are feeding clinicians’ perceptions of current assessment tools used in evaluation and treatment of PFD?

Researcher Bios

Paula Rabaey, Ph.D., is an Assistant Professor at St. Catherine University in St. Paul, MN.  She has 25+ years clinical experience in pediatric occupational therapy including early intervention and feeding, eating, and swallowing.  She is a feeding technical expert for SPOON Foundation ( and has developed curriculum to train caregivers in orphanages around the world in safely feeding children with disabilities. She recently presented in Tula, Russia on feeding strategies and at the 2nd Annual OT conference in Morocco on pediatric feeding in January 2020.

Kate Barlow, OTD is an Assistant Professor of occupational therapy at American International College and a feeding consultant for THOM early intervention. She is also the current ambassador for the CDC’s Learn the Signs. Act Early. Program for the state of Massachusetts. She has over 20 years of clinical practice and her area of expertise is feeding, eating and swallowing.


The high incidence of pediatric feeding problems is well documented, with a prevalence as high as 25% in typically developing children, 70% in pre-mature children, 80% in children with developmental disabilities (Korth & Rendell, 2015), and over 90% in children with cerebral palsy (Ju Ko, et al., 2011). With the movement to classify the range of feeding problems in the pediatric population into a unifying term “Pediatric Feeding Disorder” (PFD), there is a need for standard guidelines to choose the most appropriate assessment tool(s) that aligns with the four domains of PFD including: medical, nutritional, feeding skills, and psychosocial factors (Goday, 2019). There are many available non-instrumental assessment tools for clinicians to use; however many of the commonly used assessments are site-specific evaluations and parent questionnaires, such as the Sensory Profile and the PediEat. An issue faced by clinicians, is that the objective standardized assessments that are valid and reliable are lacking in the area of pediatric feeding and swallowing (Barton, Bickell & Fucile, 2018; Heckathorn, Speyer, Taylor & Cordier, 2016; Speyer, Cordier, Parsons, Denman & Kim, 2018). A recent systematic review on the psychometric characteristics of 10 non-instrumental pediatric feeding and swallowing assessments found missing, incomplete or conflicting psychometric data for all reviewed (Speyer, Cordier, Parsons, Denman & Kim, 2018). These assessments also were very specific to only one aspect of feeding. Assessment and treatment of PFD is critical in all domains to ensure inter-disciplinary collaboration and positive outcomes for both child and family. The purpose of this study is to investigate assessments currently used by feeding clinicians out in the field, and categorize them by the four domains of PFD in order to better understand current assessment practices and to inform future evidence-based assessment and treatment of PFD.


This study will use a mixed methods research design in which both quantitative and qualitative data will be collected via survey research and focus groups in two areas of the United States (Midwest and East coast). The quantitative survey will examine the extent that current feeding assessments fit within the four domains of PFD and the qualitative focus groups will examine clinicians’ perspectives of current assessment tools being used for pediatric feeding problems. Mixed methods research provides a way to approach knowledge from multiple viewpoints, perspectives, and research approaches that allow for greater depth and breadth of understanding the problem (Johnson, Onwuegbuzie, & Turner, 2007). Appropriate sample size will be calculated for the survey research portion, and a smaller sample size of clinicians will be used in the qualitative portion using focus groups. Data will be analyzed by the Co-PI’s using NVivo software, which allows for greater validity of the results. Focus groups will be recorded, transcribed, and analyzed according to grounded theory methodology. Final data analysis includes comparing and contrasting the two data sets in order answer the research questions.


Barton, C. Bickell, M., & Fucile, S. (2018). Pediatric oral motor feeding assessments: A systematic review. Physical & Occupational Therapy in Pediatrics, 38(2), 190-209. DOI: 10.1080/01942638.2017.1290734

Goday, P.S., Huh, S.Y., Silverman, A. Lukens, C.T., Dodrill, P., Cohen, S.S…..Phalen, J.A. (2019). Pediatric feeding disorder-consensus definition and conceptual framework. Journal of Pediatric Gastroenterology and Nutrition, 68(1), 124-129.

Heckathorn, D., Speyer, R., Taylor, J., & Cordier, R. (2016). Systematic review: Non-instrumental swallowing and feeding assessments in pediatrics. Dysphagia, 31, 1-23.

Johnson, R.B., Onwuegbuzie, A.J., & Turner, L.A. (2007). Toward a definition of mixed methods research. Journal of Mixed Methods Research, 1(2), 112-133.

Ju Ko, M., Kang, M., Ko, K., Ki, Chang, H., Kwon, J. (2011). Clinical usefulness of Schedule for Oral-Motor Assessment (SOMA) in children with dysphagia. Annals of Rehabilitation Medicine, 35, 477-484.

Korth, K. & Rendell, L. (2015). Feeding Intervention. In J. Case-Smith & J. Clifford O’Brien (Eds.). Occupational therapy for children and adolescents, (7th ed., 389-414). St. Louis, MI: Elseview Mosby.

Speyer, R., Cordier, R., Parsons, L., Denman, D., & Kim, J. (2018). Psychometric characteristics of non-instrumental swallowing and feeding assessments in pediatrics: A systematic review. Dysphagia, 33, 1-14.

Volunteer Spotlight: Sally Hamilton

Published by Feeding Matters on Mar 01, 2020

Sally Hamilton

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Sally Hamilton. Sally began volunteering with Feeding Matters at our annual community luncheon where she identified that she wanted to dedicate more of her time to our organization. You can find Sally every Thursday morning at the Feeding Matters office helping with a number of projects!

Tell us a little bit about yourself and what you do.
I am a retired Occupational Therapist; I worked with students with special needs for over 42 years, mainly in public education in Colorado and Arizona. I have been married to my husband Don for 44 years and have one married daughter and they are expecting their first child in April 2020. I love to sew, read, ride my bike, play pickleball, and travel.

What motivated you to become involved with Feeding Matters?
I volunteered to work at Feeding Matters annual fundraising luncheon and was very impressed with what I saw and what I read about the organization. In my career as an Occupational Therapist I worked with many families who had children with sensory processing disorders, some of whom also had children with feeding challenges.

How have you volunteered with Feeding Matters?
Along with volunteering at the annual luncheon, I go into the Feeding Matters office every Thursday morning and help out with phone calls and projects. Everyone there is so friendly and I feel like I am contributing to a very worthwhile organization.

What has been your favorite part of volunteering with Feeding Matters?
My favorite part of volunteering with Feeding Matters has been to be able to connect with individuals who are a part of the Power of Two program through phone calls and surveys. I’ve been able to see how this organization has made a powerful impact on families who face eating/feeding challenges.

What sets Feeding Matters apart from other organizations?
Besides their wonderful staff, I am so impressed that Feeding Matters in an international organization and has so many volunteers, as well as distinguished board members. Their commitment to providing the expert knowledge, resources and education needed to understand feeding challenges is outstanding!

Volunteer Spotlight: Kellee Dominguez

Published by Feeding Matters on Feb 01, 2020

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Kellee Dominguez.

Tell us a little bit about yourself and what you do.

I work for Arizona Central Credit Union, I oversee our Corporate Volunteer Program, and fundraising, and Financial Literacy. I have worked here for 28+ years, and have worn many hats over the years, although, this is the most fulfilling job. Because I get to work with organizations like Feeding Matters, that is helping so many children and families, that are in need of the services, and resources offered by Feeding Matters.

What motivated you to become involved with Feeding Matters?

I was introduced to Feeding Matters by our CEO, Todd Pearson, who is new to the Feeding Matters board. After learning about feeding Matters, and having 7 small grandchildren this was something that I was not aware of, and it was also shocking to hear how common it is here in the State of AZ, this is what motivated me to step in and see how I can help.

How have you volunteered with Feeding Matters?

I have coordinated a Team of Staff from ACCU to volunteer for the Annual Luncheon at the Biltmore, and myself and another group of our staff helped count money from the Luncheon. We also helped make thank you calls to the donors.

What has been your favorite part of volunteering with Feeding Matters?

Definitely working with the staff , our first experience was a great one. AZ Central Credit Union Staff will be back and are happy to help year-round as they need help. We are looking forward to a great partnership.

What sets Feeding Matters apart from other organizations?

They offer resources for Feeding Disorders and many people/ even doctors are not aware or educated. This is a great opportunity to educate and find platforms to bring awareness to Feeding Matters and the resources that are available to the community.

Volunteer Spotlight: Gilson Capilouto

Published by Feeding Matters on Jan 01, 2020

Gilson Capilouto

Feeding Matters Volunteer Spotlight is a monthly Q & A series that shares the stories of our growing network of change agents, the driving force behind our vision to create a world where children with pediatric feeding disorder will thrive. This month we bring you Gilson Capilouto.

Gilson Capilouto is the chair of our 2020 International Pediatric Feeding Disorder Conference committee and member of PFD Alliance Executive Council. She has been instrumental in planning our conference education sessions and lightning talks for the past couple of years. Feeding Matters appreciates Gilson’s initiative and passion to change the system of care for children with PFD.

Tell us a little bit about yourself and what you do.

I am Professor Emerita in the College of Health Sciences at the University of Kentucky and received my Ph.D. in Motor Control and Motor Learning from the University of South Carolina. I am a certified and licensed speech-language pathologist and a Fellow of the American-Speech-Language-Hearing Association. In addition, I am Co-Founder and Chief Clinical Office for the digital health company NFANT Labs, LLC. Atlanta, GA. I am co-inventor of an FDA cleared medical device used to study issues related to neonatal sucking in preterm and sick term infants and holds four patents for my work in this area.

What motivated you to become involved with Feeding Matters?

I first became involved with Feeding Matters in 2018 in my role as a volunteer assisting with the planning of the 2019 Annual Conference. I was motivated to become involved in FM given its outstanding reputation for serving families of children with pediatric feeding disorders. I have more than 40 years of clinical experience in the assessment and treatment of pediatric feeding and swallowing disorders and for the past seventeen years have focused my clinical research on neonatal feeding.

How have you volunteered with Feeding Matters?

In 2018 I volunteered to assist with the 2019 annual conference. Currently, I serve as the Program Chair for the 2020 conference.

What has been your favorite part of volunteering with Feeding Matters?

The connections with other feeding specialists as well as the connections to families of children with pediatric feeding disorders. The conference has been a wonderful opportunity to expand my clinical knowledge by continuing to learn.

What sets Feeding Matters apart from other organizations?

FM has a commitment not only to children with pediatric feeding disorder but also the needs of families and caregivers of children with PFD and the education of professionals working in the area of PFD.

Holidays reminds me of fun at Grandma’s

Published by Epic Medical Solutions an Aveanna Company on Dec 02, 2019

The holidays reminds me of fun at Grandma’s house: playing with cousins, building with Tinker Toys, sledding so long that our mittens (and fingers!) were frozen solid, and decorating cookies. These sweet memories have a special place in my heart.

The holidays with tube fed children should be equally memorable. In a time of year that seems to be focused on food (chocolate in stocking, decorating cookies, and of course the big family dinner) it may feel like it is impossible to have a “normal” holiday. However, simple modifications can make all the difference for your little one. Here are a few ideas to consider:

  1. Take the focus off of food. Traditionally, we pack the holiday season with tasty treats. Instead of focusing on edible gifts, try other small toys and unique gifts. Stuff your stockings with hair ties, coupons for a special date with mommy/daddy, craft projects, and toy cars. These small trinkets allow the fun to continue long past when the snacks are devoured.
  2. It helps to notify the family members who may not know all the details of the health situation, this way there are no awkward questions or pressure about “just try to eat a little mashed potato”. Understanding and compassionate family and friends can really help support caregivers during holiday dinners when they do have more insight on the situation.
  3. Enjoy nature. Bundle up in warm clothes and head out with friends and family. Sledding, hiking, building snowmen and having snowball fights are all a blast, especially with friends! Just remember to secure the feeding tube so that your child can enjoy the fun without harm to the tube; an emergency run to the hospital puts a damper on snow fun.
  4. Pack an emergency kit. Don’t forget that winter weather may trap you in at Grandma’s house. Pack plenty of formula and supplies: syringes, gauze, tape, extensions, etc. Don’t forget your pump and charger (and a backup, if you have it!), a backup feeding tube, feeding bags and a gravity bag (in case heavy snow comes and the power fails).
  5. Have fun! It’s okay to create new family traditions and memories without feeling like you are abandoning tradition. Incorporating more going and doing instead of giving and receiving is great! The holidays is not about the gifts or food, it’s about bringing family close, loving others and celebrating the season

Poems and a Loss of Words

Published by Jeremiah Blue on Oct 29, 2019

“I made myself a snowball,” Sandra presents to her son Mason, rehearsing a Shel Silverstein poem he will recite for his third-grade class.

Standing as tall as he can at just under four feet, his fingers fidget through his short dark hair. Mason takes a moment to clear his mind before he repeats the line.

“Good. Now, As perfect as could be…” Sandra continues.

“As perfect as could be,” his tiny voice still a little unsure of itself.

“How about two lines this time?”


Straightening his back and pushing out his chest, trying to make himself feel confident, Mason clears his throat. His hands are clasped behind his back, wiggling with nerves. He takes in a deep breath as he stares at the ceiling of their living room, trying to remember two whole lines in a row.

Slowly but carefully, he recites, “I thought I’d keep it as a pet…And let it sleep with me.”

Sandra contains her bubbling pride but lets out a burst of praise.

“Perfect. Nice job!”

With a quick smile, Mason’s face falls back to looking worried again, but not about remembering the lines of the poem this time. His question is much bigger than that now.

“But I don’t have to do it in front of the whole class, right, Mom?”

“Nope. Not at all. It will be just you and the teacher.”


The rest of the kids in Mason’s grade are required to recite their poems in front of their entire class, usually four to five times a year. Sandra understands her son all too well, and she knows that reading a poem in front of the other students will not be an option.

Four years earlier, Mason had completed an intensive feeding therapy program and been cleared to have a feeding tube removed from his belly. His parents began taking him to a counselor out of a concern for his mental and emotional health. Pursuing a diagnosis led Mason to be regularly seen by an array of doctors, undergoing constant testing and assessment. His parents correctly intuited that so much pain, discomfort, and continuous exposure to medical evaluation would take a toll on such a young child.

Once Mason began kindergarten—his first full-time school environment—it became clear that his health challenges were changing and evolving. He was free of the feeding tube and able to eat a limited amount of foods reliably without significant issues now. But his parents could not have anticipated the influence it would have on his socializing and functioning at school. It became clear very quickly that Mason was living with a constant sense of fear and physical pain. At first, his teachers and counselors assumed he might have autism, because he was too afraid to make eye contact or speak to anyone but his mom and his sister, Milana. Even talking with his dad, Mike, became difficult for Mason. He would often communicate through his mom. Eventually, a therapist diagnosed Mason with a disorder called selective mutism. The condition is a complex childhood anxiety disorder characterized by a child’s inability to speak and communicate effectively in select social settings. Mason found himself unable to communicate with teachers or other students at school, even when he was in pain. His co-existing diagnosis of cyclic vomiting syndrome, a part of the pediatric feeding disorder umbrella, often causes him to vomit for no reason or to vomit without being able to stop. It left him in chronic discomfort and anxiety. Still, he was too afraid to communicate with the teacher.

While in class one day, he knew that he was getting sick and needed to find a place to relieve himself. The medication he takes for the syndrome helps manage the symptoms and discomfort, but it doesn’t always work. A trash can sat not too far from his desk in the classroom, but fear was paralyzing Mason. He didn’t want anyone to know he was sick—a part of his desire to go unnoticed, to not draw attention to himself. Without being able to control the episode and unable to bring himself to tell the teacher, he instead threw up on his desk, in the middle of class time.

The paralyzing anxiety of selective mutism stops Mason from communicating about even his most urgent needs.


The day after practicing lines with his mom, Mason stands in front of the teacher to recite his poem. His arms are tightly strewn behind his back again, hands clasped together and turning over one another, legs visibly shifting from one to the other. The nerves from last night’s rehearsal are still real—even worse than before, now that Mom isn’t around. And he has to recall more than just the two lines. It’s the whole thing this time.

“Ok, Mason, whenever you’re ready,” the teacher says to him in a quiet room, empty but for the two of them.

Mason does not respond.

His eyes wander the floor. Anywhere but in the direction of the teacher. Avoiding any eye contact.

Finally interrupting the silence and Mason’s meandering gaze, she realizes her mistake. She and Sandra spoke about this dynamic and had agreed to what could work best for Mason.

“I’m sorry, Mason. I forgot to turn around.”

Pivoting to face the wall, away from Mason, she is no longer looking directly at him. With more confidence this time, he begins the first line, “I made myself a snowball…”

All the doctors and therapists and nurses, with their testing and poking and prodding, have left Mason uncomfortable with adults, mainly when they focus attention on him.

With the teacher’s back turned and her gaze diverted from him, Mason finishes the poem, reciting each of the lines, naturally and fluidly.

“Nice job, Mason,” the teacher affirms. “You know, you’re really good at this.”

The expression on Mason’s face is still tight with nerves, but a small smile forms and his eyebrows prick upwards with a hint of more confidence and relief.

“Thanks. Maybe someday I’ll do it in front of the other kids.”


The accommodation for the poems is only one part of the many arrangements that Sandra and Mike have to make for Mason so that he can attend school. A month before each school year begins, Sandra meets with counselors to talk about the unique facets of Mason’s personality, medical history and conditions. They also discuss what to expect of how this can influence his interactions with other teachers and students. Sandra will then meet individually with the teacher, explaining the details all over again.

One year, she chose not to reveal all of Mason’s medical history or symptoms with the teacher. She wanted to leave room for him and the teacher to develop their relationship and bond together. Never again. The teacher’s lack of understanding resulted in regular punishment for Mason. Punishment for when he wouldn’t speak or wouldn’t sit with the other students, or when he stayed in the back of the room because he was silently enduring sickness and pain again.

The ripples of Mason’s health extend beyond his experiences at school and with food, beyond his anxiety disorder and his syndrome. His big sister has also struggled. Milana, older by two years, didn’t understand why Mason gets so much attention and special treatment.

At a family dinner, Milana decided it was time to speak with her parents about it. She turned to her mom and pointed out that Mason was using the iPad at the table.

“That’s not allowed, Mom. I couldn’t do it,” she pointed out with diplomacy and wit. “Mason even gets to stay up late sometimes. It doesn’t seem fair.”

Sandra and Mike have been forced to improvise around Mason’s evolving health challenges and their management of it. They have mostly settled on no longer prioritizing a diagnosis over trying to be happy and thrive, in the absence of answers they have long and busily pursued. They had initially hoped a diagnosis would be the key to finding treatment and moving on. Instead, now, they focus on the day-to-day, the attempt to be as confident and comfortable with their understanding as parents. They are continually refining their ability to morph, learn, and adapt on their own to the new and compounding challenges that arise. Sometimes, that means their approach to parenting with Mason means different things than it means for the more independently functioning Milana. But Milana still feels it in her life—and feels it deeply.

At the dinner table that night, with conviction and clarity, in front of the whole family, she asked her parents a straightforward and emotional question.

“Why do you love Mason more than me?”

It’s a question that pierces deep into a parent or anyone who cares and loves for someone as profoundly as Sandra and Mike loves Milana and Mason, equally.

Mason faces the challenges of pediatric feeding disorders like cyclic vomiting syndrome and the anxiety disorder of selective mutism. But his entire family is intimately entwined with the ongoing and ever-changing circumstances they face.


By the end of the school year, Mason has had the chance to recite a few more poems. Just himself and the teacher, no classmates. The teacher’s back always turned so he can manage his fear and anxiety.

For his final recitation of the year, Mason and Sandra are practicing again in their living room. He chooses a little longer poem this time, something slightly more challenging than his first attempt. His confidence is growing. And the rehearsal with his mom goes as planned like it always does. Nothing has changed. They learn the lines, repeat them to one another, and Mason gears up to present with the teacher. Sandra has no reason to believe anything is different this time. Neither Mason nor the teacher mention any changes.

But that is not the case. Mason comes home with a report card from his teacher. Sandra opens it up and is happy to see that the grades are positive. She catches something in the remarks about his poem, though: Mason read the poem in front of the entire class.

Astonished and initially upset that the teacher would alter the agreement the two of them had decided on before the year started, Sandra asks Mason about it.

Her face shows a clear sense of confusion and concern.

“Mason, you read your poem in from of the entire class?”

Mason does not bat an eye. He looks at her, with all the innocence of a small child—Mason’s innocence even more pronounced by his quiet and passive demeanor. But his response is plain and clear.

“You thought I couldn’t do it, but I could do it. So, I did it.”

Sandra is shocked. And then, quickly, prouder than she could have imagined being at this moment.

She had been mowing the proverbial lawn for Mason for so long—preparing special meals different from the rest of the family, or meeting with countless teachers and counselors, or fillings out endless forms, or directing and monitoring Mason closely for his safety and comfort. And now he has joined her in pushing the mower across the lawn. He understands the need to challenge himself and try new things.

So, he did.

In the same way, years earlier, following a session in intensive feeding therapy, the family was encouraged to try new things slowly. They decided on going for pizza, a family favorite. Mason had a fear of foods he described as “wet.” To him, a saucy and cheesy pizza was certainly wet. But like the therapist and his parents encouraged him, Mason challenged himself and tried it. Then, promptly gobbled the entire piece down. No issues.


A village has been assembled, by Sandra and Mike, to participate in Mason’s life and health. And Mason certainly has a hand on the figurative lawn mower, helping forge his path through the dense and often murky landscape.

But there is no doubt that a great deal of mystery and angst accompanies Mason and his family. In the last three years, since he started school, a whole new world and set of challenges have evolved. A series of unexpected things. His parents learn each day, each month, and each year anew. Doctors still offer minimal clarity on the disorders or treatments related to pediatric feeding. Not to mention rarely providing perspective on the traumas that result in a child. Or their families and communities.

Sandra, Mike, and Milana were happy to hear those words, “I could do it. So, I did,” from Mason, and to see him gobble down one of their family’s most celebratory foods. And they perpetually wait to understand how their lives and health will change and evolve. They are poised and on alert for how to manage the continuous novelty of it all. Hope and anxiety, good days and bad days, victories and failures—these are the things that define their daily lives. They remind themselves to be patient and kind because everyone has a story.

But Mason and his family live a story with far more mystery and unanswered questions than the average family. Clarity on treatment and diagnosis for Mason is most often silent. An utter loss of words or the ability to communicate about pain and paralyzing anxiety.

Much like the absence of words Mason experiences in his young life.

Food Is Sensory: Post-Event Blog

Published by Marsha Dunn Klein on Oct 23, 2019

Post-Event Blog

  • Is there a formal assessment that parents and healthcare professionals can use to help “grade the ask” for children who refuse to eat? Do you have any strategies you recommend?

First of all, I believe we need to be careful about the words we use.  I, personally, do not usually talk about children “refusing to eat”, and do not chart “refusal behaviors”, as such.  I chart other things.  I see the adult role as “offering” appropriate foods and children can eat them or not.  I do not describe children as “refusing”.  I describe them as communicating something to us and we, as their caring grownups, need to play detective and try hard to understand why they are not YET able to eat that food.  I think when a child is not taking the food we offer, there is a reason.  But, might we be asking too much?

In my new book, I talk about grading our ask.  There is not a formal grading the ask assessment, just guidelines.  Is the food or liquid safe (and does the child BELIEVE that?) Is the food the right developmental ask? (Is the child developmentally ready for that food, utensil, or eating skill?)  Is the food the right sensory ask? (Is the child YET comfortable with the look, smell, sound, texture or taste of that food?  Can we modify it so the sensory ask is smaller, more graded, and the child is more motivated to try it?) Is the food the right motor ask?  (Does the child have the safe and confident eating skills needed for the food offered?)  Is the food the right emotional ask?  Can we start where the child feels comfortable and successful and tiptoe from there? If the child has had scary or worrisome experiences with that or similar food or mealtimes in the past, are we pushing him right into LOTS OF WORRY with our ask?  Can we scale that back?   Are we expecting the right independence ask?  Are we requiring the child to eat when WE feed him, when he is perfectly capable of feeding himself?

We could chart refusal behaviors, but maybe “refusal” in that situation is the right response for that child from his perspective.  I actually believe I could get ANY child to “refuse” just by the way I presented a food.  I look at refusal as MY NEED TO ADAPT, (grade the ask) NOT the child’s need to comply with my demand.

  • How do you define a “successful” treatment for a child with a pediatric feeding disorder? Is there criteria you recommend?

Successful treatment for a child, in my opinion, requires the parent to be included as an active participant in the WHOLE process. We need to support families at the pace the child AND PARENT are comfortable. Just like I believe that if the child is “refusing” they are communicating some type of struggle to us, and WE MUST adapt, I also believe if a parent is not successful, then we, as supportive team members must try to understand why, meet the parent where they are at, where they are ready, and re-think how we are offer support.  Just like not all treatment strategies work for all children, not all home strategies work for all parents.  We adapt and partner with parents to determine next steps.

We think of success, not in number of bites or reducing the number of refusals, though that is one way to define progress.  Instead, we look at the development of life-long skills, such as demonstration of a positive tilt, opening the mouth to indicate readiness for the offered spoonful or nipple with the child pacing the meal rather than the adult. We look at the life-long skill of confidently learning new food trying skills.  We look at being able to eat with the family at a family meal.  We look at positive food interactions (being able to touch food and pass food, serve food, help in mealtime jobs).  We look at how many ways can the child feel celebrated around food and meals, (rather than feeling like he is disappointing his grownups every meal). Success can be the child bringing her own spoon to her mouth to feed herself rather than being fed by an adult.   Success is also helping the child feel better, take in the needed nourishment, learn the skills to confidently chew and swallow foods and liquid, and enjoy the sensations of eating, and enjoy the mealtime with others. Can it be a success if a child can happily come to the mealtime, enjoy the food offered, and be allowed to leave the table when full?

The webinar I did for Feeding Matters is about how Food is Sensory.  I outline lots of ways to look specifically at the look, smell, sound texture and taste of foods so we can carefully offer new foods in ways that dilute the worry and allow children to be active and joyful participants in the process.

  • What can parents and healthcare professionals do to create an environment that encourages positive mealtime experiences?

The first thing I like to do is help parents and professionals imagine THEY ARE THE CHILD who is struggling to eat.  Imagine how THEY themselves would like to be approached if THEY had a big mealtime worry, if they were worried about texture, or swallow safety, or if they felt badly when they ate, or if they could not manage the skill of eating.  I have always thought that putting myself in someone else’s shoes is a great starting place. (Check out the Grasshopper Story ).

The second thing I think about to encourage success is starting from a place of MEALTIME PEACE. When parents and children are totally stressed about mealtimes, it is hard to help either of them want to try anything new.  I ask parents, what would YOU need to do in YOUR house to achieve Mealtime Peace, a mealtime with no anger, crying, pushing, arguments, and no pressure?  Maybe the child needs rehearsals, to learn how and what others eat.  Maybe she needs food rehearsals where she gets to explore the food before well-meaning grown up puts it in her mouth.  Maybe the child needs to be offered new foods or textures in such tiny incremental sensory changes so that it is hard for her to notice (or worry ) about the change?  Maybe the child needs to eat comfortable foods at the meal and work on new food trying away from the meal, bringing the new food or skill to the table when comfortable? We aim for Mealtime Peace because when calm and comfortable, children are in more of a learning mindset rather than an escaping mindset. They can learn about family togetherness, manners and what to expect from a meal. They can trust at that place of Mealtime Peace that they will not be forced or pressured into trying new, that there will not be sensory surprises and that they are a celebrated part of the meal.

  • What tips do you have for families and healthcare professionals looking to introduce new foods to a child with a pediatric feeding disorder?

When introducing new foods, can we start with foods or liquids that the child enjoys or is currently successful with?  Success, comfort and enjoyment can be our starting place.

I like to offer rehearsals in trying new foods.  In a rehearsal, a child gets to see others eating and interacting with that food.  They get to see what we do with that food and how we eat it.  They get to explore the look, smell, sound, texture and taste of the food before it ends up in their mouth. No sensory surprises.   They get to help put it in their own mouth, or to their own lips when THEY are ready, when the rehearsal was motivating and they show interest or readiness.  Sensory exploration of the foods helps the child be ready for it. For example, smelling a food is a rehearsal or preview that gives the child an idea about the taste before it is put in her mouth. Touching the food can give the child the idea of the food texture, again, before it is on her tongue.  If you were worried about trying a new food, would you put a food in your mouth that you could not, would not even touch?  Having these sensory rehearsals can really help.

  • Considering the newly published consensus definition of PFD, which domain or factor do you feel most greatly influences the child’s relationship to food and the caregiver who feeds them?

In my experience, all the domains of PFD, medical, nutritional, feeding skills and psychosocial, influence the child’s relationship with foods and their caregiver. When a child struggles to eat for any reason, caregivers worry.  Infants and children communicate that their mealtimes are not working for them by not eating, not eating enough, struggling with the motor skills of eating and sensory aspects of foods and, often, pushing their caregiver away. These reactions influence their relationships with food and with those who lovingly want them to eat more or differently.

As parents and professionals try to understand the roadblocks to confident and enjoyable eating, the mealtime interactions can become a stressed communication. The medical aspects of PFD relate to how well the child feels, if they have the endurance and physical abilities to eat.  The nutritional aspects relate to the child’s ability to take in enough nutrition on their own to grow well.  The feeding skills including muscle, motor coordination and sensory aspects of food influence eating enjoyment and confidence.  And the psychosocial aspects of eating relate to the child’s interactions with caregivers and the mealtime. The meal becomes a constant dialogue where the child communicates her abilities and enjoyment and the caregivers listen and adapt to help make the mealtime successful and enjoyable. So, PFD is all of those domains. It is difficult to look at only one when helping children learn to enjoy foods and eat enough.

  • It seems that enjoyment of a mealtime is very individualized. What role might more protocol based approaches have in the treatment of PFD?

I think enjoyment, confidence and internal motivation are big goals in supporting children who struggle with eating.

I personally like the word, “guideline” rather than “protocol”.  I have almost five decades of experience with a more “guideline” approach that is responsive to the child’s reaction.  We offer.  The child is able to take that food, or not.  If yes, GREAT. If no, we adapt the presentation for success to grade our ask. Was the texture, the bite size, the wetness of the texture too much?  Can we adapt for success? When relying on protocols, or teaching protocols to parents, I have found that it can sometimes lead to stricter, less flexible and less individualized interpretations and approach.  I have listened to parents my whole career, and many tell me when they were sent home with a protocol, it did not feel natural and was harder for them to implement in the home.   We can all contribute.   I believe there are many, many ways to support children who struggle to eat and that parent find the approaches that work for them.

About Marsha

Marsha Dunn Klein OTR/L,MEd, FAOTA is a pediatric occupational therapist who has spent a career specializing in pediatric feeding challenges. She received her bachelor’s degree in occupational therapy from Sargent College of Boston University in 1971. She also received a master’s degree in education with emphasis on special education in 1975 from the University of Arizona. Marsha has co-authored PreFeeding Skills editions one and two and Mealtime Participation Guide and Homemade Blended Formula Handbook with Suzanne Evans Morris and Feeding and Nutrition for the Child with Special Needs with Tracy Delaney. Marsha’s new book Anxious Eaters, Anxious Mealtimes: Practical and Compassionate Strategies for Mealtime Peace serves as a great resource for parents and caregivers. She lives in Tucson, Arizona and travels to present locally, nationally and internationally on pediatric feeding issues.

If you haven’t had a chance to watch Marsha’s virtual workshop “Food is Sensory,” you are welcome to participate on demand. It will be available on demand through April, 2020.

Register Here

PFDA Quarterly Update

Published by Feeding Matters on Oct 10, 2019

Our Summer Town Halls are complete. We are pleased to report on pillar actions and committee achievements as we prepare for our digital ideation and symposium to be held in January 2020. The Education Pillar continues its efforts to understand the community’s educational needs and meet those demands with evidenced based education, resources and outreach.
    • A PowerPoint Presentation on PFD has been drafted and will be piloted with our university partners from all four domains as we work to educate upcoming practitioners on PFD.
    • The first completely virtual International Pediatric Feeding Disorder Conference agenda has been established and is now open for registration.
    • Our educational resources, including products, texts, articles, and handouts are under construction and expanding. Criteria for resource review and inclusion has been developed to ensure resources are relevant, evidenced based and aligned with our mission.
The Advocacy Pillar is working to fulfill its advocacy agenda while organizing a coalition to enhance services for children with pediatric feeding disorder.
    • A proposal has been finalized and submitted to the CDC advocating for PFD to be a standalone diagnosis.
    • Early intervention eligibility standards are under investigation as we build a better understanding of each state’s EI service model.
    • We have identified the need for a consensus on assessment and management of PFD. Resources continue to be gathered as we prepare for a formal consensus meeting.
The Research Pillar continues to develop a body of evidence which promotes early identification and funding support of PFD.
    • The prevalence study on PFD is complete and has been submitted for peer review.
    • The research blueprint has been finalized. View the Theory of Change to see what is next on the research agenda.
As the Pediatric Feeding Disorder Alliance continues its efforts through committee actions, we encourage you to get involved. Every contribution furthers our initiatives as we come together to care for our families impacted by PFD. Participate in the Alliance Contribute knowledge Leverage resources Support families