Dear Friends of Feeding Matters,
If you are one of the many people embracing the return of routines, packing lunches, sports and activities, you’ve been on my mind. I am wishing you a smooth transition from lazy summer days to busy homework nights. At Feeding Matters, we are acutely aware that this time of year can bring a mix of excitement and apprehension.
Our recent consensus endeavor, a summit with leaders in the PFD and ARFID communities, also produced a mix of enthusiasm and anticipation, underscores what is core to our mission. We believe in the power of consensus and the value of uniting various perspectives to focus on what children need. Reflecting on our recent Consensus Summit in partnership with Emory University and Children’s Healthcare of Atlanta, I was reminded of the magic of collaboration. This gathering allowed Feeding Matters to dive into the challenges and solutions related to PFD and ARFID diagnoses. The collective effort of this group is propelling us toward a brighter future, and we intend to share these results with our wider community soon.
The lessons that we learned from this consensus serve as key principles that resonate within our team but that I also think might benefit us all:
- Embracing core values: Where there is disagreement, values aren’t aligned. By bringing individuals to the table, united in their dedication to improve access to care for children and families, we found pathways to alignment.
- Words matter: The meanings, intentions, and assumptions tied to words often vary. As we work to provide clarity within our field, we always have to ensure that we are speaking a shared language.
- Continuous learning: A shared commitment to always do better invites us to approach each day with open minds, ready to absorb insights from one another.
- Challenging assumptions: Assumptions can easily take root regarding various fields, disciplines, and individuals. But only by actively questioning these assumptions can we begin to find common ground and forge meaningful connections.
While these principles have allowed us to learn and grow, they also extend to our full community.
As we stand on the threshold of a new schoolyear, we approach it with a shared commitment to collaboration and growth. Thank you for being an essential part of our community. Together, we can transform challenges into triumphs and nurture a more promising future for all children with PFD, their families, and the professionals who treat them.
Jaclyn Pederson, MHI
CEO, Feeding Matters
After 8 years as an educator in the public school system, I have worked with a handful of students who have pediatric feeding disorder (PFD). The students I supported fell under broad spectrums of disability, and that does not exclude the spectrum that exists within PFD. Some children had g-tubes that required nursing accommodations and/or 1:1 aides; some had sensory sensitivities that made for a very limited selection of preferred foods; some children had to be spoon-fed with their food cut up and watched carefully for choking, gagging, etc.
It was a world that, for a long time, I generalized as “SpEd World.” It wasn’t until two years ago, when I learned about PFD through Feeding Matters, when I realized that PFD in many ways is a world of its own.
I wish I could say that PFD was something I was taught about in my college program; it was not. I wish I could say that I felt fully knowledgeable and prepared to support my students who had PFD; I was not.
On the very first day of school as a first-year teacher, I was face-to-face with a child who had PFD. There were times throughout the year, when I saw her sweet face become instantly distressed when she ran out of food in her lunchbox. It contained the only three things she ate: pureed fruit/vegetable blends (but only banana-apple-pear, sweet potato, and butternut squash… Other flavors, she would not eat and would know upon simply opening the puree pouch that it was not her safe foods), Nilla wafers, and vanilla-flavored milk.
Her parents packed what they knew to be a typical day’s worth of food for her, but on days when she was particularly hungry, she would eat through it by our scheduled 10:30 lunch, leaving nothing for 1:30 snack. She cried and screamed, and my heart just broke. I did everything I knew to do – offer her comfort, and offer her snack options from my cabinet. At the time, I did not know how specific and restrictive her diet was. Looking back, and knowing this student so well now, I realize that I caused even more distress in doing this. Her parents were amazingly accommodating, and we worked out a system to have extra supplies at school for her.
I tell this story not to discourage anyone, but to simply make the point that all teachers – even special education teachers, who have been trained in how to legally accommodate for a variety of unique needs – still need to be educated on pediatric feeding disorder. We know that roughly 1 in 37 children under the age of 5 in the United States are diagnosed with PFD; that means that there’s roughly one kindergartner in every classroom in America who has a diagnosis that we teachers know very little about and likely will not know how to accommodate.
The heart of a teacher is that of a giver, someone who wants to serve children and families and affect positive change in their community. In this way, we align beautifully to the heart and mission of Feeding Matters. We cannot, however, serve children and families without a growth mindset. We must always be seeking to learn new things, to improve our practice, and to gain a better understanding of the children we serve. PFD is one of the areas of knowledge that we teachers generally lack in, and this needs to be addressed.
I came to learn about PFD on my own terms, after gaining more and more students who fell into this category. I found Feeding Matters specifically when a student with a g-tube entered my classroom, because I felt I needed to know more in order to ensure his safety and wellbeing.
While it is amazing that Feeding Matters provides so much in-depth information, it is up to us to seek it out. I hope that we can integrate PFD into field programming at universities, not just for special education but for all educators across all specialties (because I know several students who are out in their grade-level classrooms with PFD as well!). Teachers should be prepared to serve these students, and this is the first step.
Below is a list of concepts that I feel should be included in educator academia:
- Definition, signs and symptoms of PFD
- Meaningful accommodations for PFD, (i.e., nursing services) and how these accommodations are written into IEPs/school documents
- Peer-reviewed research on how PFD affects development, including how their learning may be specifically impacted
While these are somewhat basic, this information is essential for teachers to effectively educate, advocate, and accommodate their students who have pediatric feeding disorder. With this as a solid foundation, we would be making a better world for children with PFD. And isn’t that the whole point?
Parents have provided permission for their student’s story and photo to be shared here.
When you spend hours every day feeding your child and running to therapy and medical appointments, starting school can seem daunting. Whether it’s at age 3 or later, there comes a time when your child is ready to head to school.
We asked three women experienced with different school stages for children through young adults with pediatric feeding disorder (PFD) to offer advice. Following are their stories and advice.
Transitioning to preschool with PFD
At the age of 2.5, when most toddlers’ parents are thinking about starting preschool, Liz Wiseman Smith was busy with too many hospital stays to count. Still, helping her daughter, Zoe, reach age-appropriate milestones as best she could was a priority.
Zoe was born prematurely with heterotaxy syndrome, which occurs when the heart and other organs are in the wrong place in the chest and abdomen. Before the age of two, she had five cardiac surgeries. Reflux from gastroesophageal reflux disease (GERD) meant that she needed a gastrojejunostomy tube (GJ-tube) that allowed her to eat through her intestine.
Health complications meant Zoe had just begun walking six months before school and communicated through sign language. Despite all she’d been through, the family was determined to help Zoe thrive.
“Our goal was trying to get her caught up as quickly as we could, but there was a lot to focus on,” says Liz.
Set up a communication plan
In Massachusetts, Liz was accustomed to a robust early intervention program where clinicians came to her home and left details from every session. Starting preschool meant figuring out how to transition from this open communication model to public school special education, which wasn’t likely to meet that same level.
Liz took it upon herself to initiate communication and found her daughter’s school was responsive. Zoe’s preschool teacher even developed a communication plan using a notebook, which the nurse updated.
Be sure your child’s school has the nursing staff you need – and a plan for substitutes
For kids with complex feeding issues, especially with feeding tubes, the school nurse is an integral component to successfully transitioning to a new school. This means connecting with the nurse before school and also ensuring the school has a plan for any days when the nurse might be absent. For Zoe, this meant she started school three weeks late because her school initially couldn’t find a nurse.
Transitioning to elementary school with PFD
Yomi Ogedegbe’s son, Joshua, is seven and beginning third grade. Although he is on the autism spectrum, he wasn’t diagnosed until age 4. He struggled with feeding since beginning solids, eating mostly a pureed diet, but only recently was diagnosed with oral dysphagia.
Having specific diagnoses has been key to accessing therapy services in and outside of school with insurance coverage.
Navigating her son’s autism and pediatric feeding disorder has meant that Yomi has learned valuable lessons about making the most of education and services in school.
Make your child’s IEP as detailed as possible
Yomi considers parents a key partner in developing her child’s Individualized Education Plan (IEP). Rather than leaving it to Joshua’s team of therapists, she did a lot of research to figure out what to include in the documentation. “If there are things that you think will be helpful, research to get the information so that when you ask for something, it’s backed by evidence,” says Yomi.
Be your child’s advocate
Just because something is written in your child’s IEP, doesn’t mean it’s necessarily followed all the time. Yomi says she regularly looks at Joshua’s IEP and calls to check with his case manager. “When they know you’re regularly keeping track of everything that’s supposed to be done, there’s more incentive to do what they’re supposed to,” says Yomi.
Ensure continuity of care
When your child receives therapy services, connecting the school team with outside therapists is important. For example, Joshua spent a month in an intensive feeding therapy program. Yomi connected her son’s school speech therapist to the feeding program team so that she could get trained on how to continue supporting Joshua’s feeding goals.
Transitioning to teen years and beyond with PFD
When Dana Kizer, MS, OTR/L was in school with her brother, Sean, who is medically complex, there were times when she would have to step in to support him. Once when Sean was more sensitive to touch and getting wet or messy, Dana saw him accidentally spill his lunch tray and had to run over to keep him from taking off his clothes in the school cafeteria.
Today, Dana is an occupational therapist, and her brother works part-time at Barnes & Noble. Thanks to feeding therapy support, Sean can enjoy a variety of foods and textures with safe oral motor skills. Still, he does sometimes need cues for pace and bite size.
As an OT and a sibling who continues to help out, Dana offers some tips for transitioning to high school and beyond.
Not every time can be therapy time
In times of stress, transitions and routine changes, it might be important to lean on comfort foods. For example, when Dana’s family went on a cruise, Sean would only eat chicken tenders by the pool. Out of his normal routine, it took a few days to adjust and for his anxiety to decrease. After a few days, Sean could eat a variety of foods without it being forced or stressful. “What we learned as a family is that we’re not always in therapy mode,” says Dana.
Focus on episodes of care
Transitioning to high school, college or a new job might mean your child with PFD needs what Dana calls short bursts of therapy focusing on a few goals. As an occupational therapist, many clients will see her in the summer to prepare for increased independence before a transition. This is especially important for teens and young adults who need new, age-appropriate regulating methods. “They might plateau in feeding therapy or take a break, but they return when their maturity level increases and they’re ready to be more independent.”
Having a child with PFD at any age means constantly adapting and learning. Getting support from those who have been through the journey before makes these transitions a lot easier.
This blog was adapted from a panel at the International Pediatric Feeding Conference. All three parents are members of the Feeding Matters parent advisory board.