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Navigating the Journey
This process of finding the best and the brightest to help care for your child dealing with PFD can be very stressful and overwhelming. Treatments vary with age, what is currently available to you, and the amount of impact PFD has had on your child.
Preschool and School-Based Services
When your child becomes of age to enter the area’s public school system, it is important to know what services the district does and does not provide, as well as how to gain access to them. Before your child turns three years old, ask about Child Find in your state. Child Find requires all schools to “identify, locate and evaluate all children with disabilities, regardless of the severity of their disabilities.” (Wright). This is what helps to identify children in the district that may need special treatment or education services even if the school does not offer said services. All children from birth to 21 years of age must be located and evaluated by the school if they have a disability of some kind. You should also contact the district’s Special Education Department for more information.
What you can do to help as a parent or guardian to help the school your child is going to in order to be considered for certain special education services. This can include sharing the medical records, therapy interventions and feeding history. Discussing certain mealtimes with your child’s school and how you prepare food, position your child at mealtimes, and any special precautions is extremely important when it comes to their safety and educating the staff on premises.
If you have an Individualized Family Service Plan, a meeting will be held prior to your child’s third birthday in order to develop a plan of action with other service providers from early intervention and other schools in the area. However, if you already have an Individualized Education Plan, you must inform your child’s instructor who is setting up the annual IEP and talk about which needs must be addressed.
In the event that your child does not qualify for any special education services, consult with your child’s medical team, request a meeting with your school district’s director of special education to discuss your options. The Individuals with Disabilities Education Act
(IDEA) and Americans with Disabilities Act (ADA) help students with disabilities participate to the fullest extent in school and in extracurricular activities. Understanding the regulations involved can help you navigate the educational system while your child is still studying, especially with PFD and mealtimes.
Feeding Matters Resources
This link leads to a list of resources for you and an example of what can be found on the Feeding Matters website.
Self Care
This can be an extremely stressful time for you and your family, especially with the challenges that come with PFD, but you are not alone. Especially in these trying times, it is easy to feel isolated. What you can do to combat this is find support groups in your area online and connect with parents going through the same thing. Communicating with someone who is also in your shoes can hopefully alleviate some of the stress of feeling alone. If you need more support, therapy through telehealth should also be available. Get up and move around! A healthy body can help in aiding the mind and feel at ease. Yoga, housework, or even simply stretching can help. Get outside and breathe in the air for a few minutes. Combine getting up and moving with this idea and take a short walk. There are many constructive ways to put your mind at ease, and maybe you already have one! If so, great! I wish you the best of luck on you and your child’s journey.
F. (2020). Pediatric Feeding Disorder: Family Guide [Pamphlet]. Feeding Matters.
Goday, P. S., Huh, S. Y., Silverman, A., Lukens, C. T., Dodrill, P., Cohen, S. S., . . . Phalen, J. A. (2019). Pediatric Feeding Disorder. Journal of Pediatric Gastroenterology and Nutrition, 68(1), 124-129. doi:10.1097/mpg.0000000000002188