Attending school can be nerve-racking for children and parents! The IFOPA has many resources to help you and your child confidently ease back into the classroom.
The IFOPA has Grade/Age-Specific Tips for Navigating FOP and School. Additionally, Family Services Coordinator Melissa Davis is available via phone, text, Whats App, social media messenger, and Zoom to help you with specific needs, requests, and questions. Reach out to schedule a time to meet with her - [email protected] or + 1 (605) 877-5289.
Classroom Talks
Nervous about how your child’s classmates will receive your child? Many FOP parents give a classroom talk at the beginning of the year. The IFOPA has also created a video that can be shown.
The Same But Different: Life with FOP Classroom Video
The Ability Toolbox: Everyday Tools for Independent Living
The Ability Toolbox showcases adaptive equipment that can help make everyday life with FOP easier. It also includes many items which can help during the school day. There are various adaptive clothing ideas, dressing aids, adaptive silverware to improve independence at lunchtime, and a whole section dedicated to school and childhood.
Supporting a Child with FOP: A Practical Guide to Their Learning Journey, by FOP Friends
This book is an essential and informative guide for anyone supporting a child with FOP. It details FOP in a reader-friendly manner, while providing invaluable advice.
The Portuguese version of the guide was also written by FOP Friends. Helen Bedford-Gay worked with Kryscia Napoli, mother of Vitor, who lives with FOP, and Dr. Patricia Delai to review and update the guide for 2024. It also contains specific advice and guidance for children and young people in Brazil.
Safety at School
Keeping your child safe at school can feel overwhelming. Sharing a personalized medical form with your school nurse, administration, and teacher can provide peace of mind while making sure everyone is on the same page. Similarly, the FOP Treatment Guidelines written by the International Clinical Council on FOP should be shared with your child's IEP team and any physical, occupational, or speech therapist.
Personalized Emergency Medical Form (available in 5 languages)
Email to Principal and Teacher
Emailing your child’s principal and teacher before the first day of school is a great way to break the ice and share resources with them. Here is an example email script:
Hi (Insert Name Here)
I am reaching out regarding (Insert student name here) who will be a (insert grade and school here) this year. (Insert name here) has a rare genetic condition called Fibrodysplasia Ossificans Progressiva or FOP for short. They are truly one in a million, as there are less than 1,000 confirmed cases worldwide. In short, FOP causes a person's muscle and tissue to turn into extra bone in their bodies. This blocks their joints, limits their mobility, and eventually results in near-complete immobility. FOP can be accelerated through trauma such as a fall on the playground or a virus. There is currently no cure for FOP. (INSERT SPECIFIC INFORMATION ABOUT STUDENTS PHYSICAL ABILITIES HERE.) Many children with FOP have support in the classroom ranging from adaptive desks, OT, playground and gym support, an emergency plan with the school nurse, and an aid. The most important part in my mind is staff and student education, as well as continual monitoring and updating of the IEP plan as the condition progresses. I would love to partner with you to help provide any education and support you and the school might need. I have linked a few resources below that you might find helpful.
What is FOP? – Basic information for you and your staff
FOP Science Made Simple – Good video for your staff
The Same But Different – Cartoon-style video created for children that families often show the class
Emergency Medical Information Form – Personalized form for your school nurse to keep on file
FOP Treatment Guidelines – Medical information for a school nurse or OT/PT
