15% of $10,000 goal
The fear. The frustration. The confusion—what am I doing wrong? The desperation—why can’t I find someone to help?
Pediatric feeding disorder (PFD) is still a new term for many, but for parents and families who have kids who struggle—the anxiety and worry are all too familiar. Children may struggle to eat for days, weeks, or months. For children with PFD, mealtimes that should lead to nourishment and connection become the source of fear and distress.
Pediatric Feeding Disorder is more prevalent than many other serious childhood ailments such as autism or cerebral palsy—1 child in 37 between 1 and 5 years old could be diagnosable. Yet as feeding therapy professionals, we’ve learned a hard truth: many professionals—even pediatricians!—aren’t trained to diagnose or help effectively.
It had been eight months before Brandon’s mom was referred to one of our therapists (see Lindsay's story above!). Eight months of worry without answers—and she wasn’t sure where to go next. Brandon was a very active two-year-old with sandy-brown hair who loved to chase his big brothers around the living room and couldn’t get enough of Paw Patrol.
Yet after multiple choking episodes (though many kids gag occasionally when learning to eat, a sign of PFD can be repeated choking episodes), his mother started to become afraid. “We have someone watching him all the time,” she told Lindsay Hoffer, M.S. CCC-SLP, CLC. “I’m always anxious that we’ll lose track just for a few minutes and that he will find a Cheerio and choke.” The parents of three kids, Brandon’s mom and dad felt intense stress. Grandparents and daycare workers weren’t trained to handle this type of mealtime challenge, so his parents’ worry continued to grow.
Brandon saw a pediatrician and a speech-language pathologist, but neither were trained to diagnose and treat pediatric feeding disorder. And in rural downstate Illinois, finding specialized care meant driving hours away. Brandon’s mom felt alone, angry, and desperate to care for her child.
Early diagnosis for Pediatric Feeding Disorder is critical, but it’s often missed by well-meaning medical professionals. State-supported early intervention programs are often lacking in providers with the specialized training they need to support families.
As professionals trained in feeding therapy, we realized we were facing a problem without enough resources or professionals to identify and support families in need. We decided to take matters into our own hands. In 2016, we held the first meeting of the Chicago Feeding Group with simple goals: bring together caring professionals for training and collaboration to better reach struggling families.
The Chicago Feeding Group story was first focused on a better world for families in the Chicagoland area. In Spring 2020, as we all faced the new threat of COVID-19, something incredible happened that transformed us:
The Chicago Feeding Group found that our simple proposition of bringing low-cost but high-quality professional training was more of a need than we realized. Event registration grew rapidly. 300 people. Then 500. Then over 1000! We scrambled to find the software we needed. Parents started hearing about us and attending events seeking help. The Chicago Feeding Group became a source for hope and information to families and professionals around the world.
We have no illusions that we can personally reach every child who needs our help.
But we can imagine a world where kids are quickly diagnosed and treated with the highest quality of care.
To do that, changes must be made from the start, in occupational therapy and speech-language pathology training programs. Someday, we hope this will happen. But right now, the training and professional mentoring need is immediate and much larger than this. Chicago Feeding Group is acting now to help children like Brandon get the help they need.
We leverage our non-profit status to engage experts in the field—highly trained feeding professionals to coach and teach younger professionals in our popular monthly training sessions. The key to earlier intervention for families is more informed professionals.
CFG is actively educating Illinois Early Intervention staff and providers with the most current research and information to support children with PFD and their families. We want every infant and toddler in Illinois who needs support to get it as early as possible. Our goal is to expand this initiative to other states.
Awareness of this diagnosis is critical. Five states in the United States have formally recognized PFD. We support advocacy groups such as Feeding Matters in bringing that number up to 50, and we regularly train with real case studies and stories.
Parents shouldn’t have to feel like they are alone. We host online mutual support groups powered by active parents and are working to author professional-level resources written for non-medical professionals. We have plans to further expand our options.
Chicago Feeding Group is a 501(c)3 federal non-profit and gifts are tax deductible as the law allows.