Patients and Families

Amanda Cali's Back-to-School Checklist 

• Verify everyone has a copy of your child’s 504/individualized education program (IEP) plan
• Meet with the teacher/nurse/occupational therapist (OT) to discuss any classroom modifications
• Make sure your child has an up-to-date physical
• File an immunization medical exemption form (contact your district office)
• Get a note for any modifications (e.g., no contact sports) needed in physical education (PE)
• Have a doctor's orders for any medication given at school (e.g., when and how to administer prednisone)
• Ask to talk to your child’s class about FOP. Read this FOP Talk for Amanda's example of a classroom talk

Specialized School Plan Tips Shared by Rory Otto

If your child has an existing 504 Plan, spring is the time for your annual meeting. Typical attendees include your child's teacher, school nurse, school psychologist, physical education teacher, and a representative from the district. Each team member will give an update on your child, and you will have a turn to speak as well.

Here are some tips from FOP parent, Rory Otto, to help you prepare for your meeting.

• In advance of the meeting, note what is working well for your child, as well as any modifications that need updates.

• Example accommodations that individuals with FOP have received are:
  • 1:1 aide
  • Preferential seating (e.g., custom chairs with a back and/or arms and seating less likely to be bumped)
  • Accommodations to move from class to class early, before the hallways are crowded
  • Accommodations for physical education
  • Individual plans for emergencies and drills
  • Medication kept/administered at school
  • Alcohol-free hand sanitizer kept at the desk and/or own supplies to prevent the spread of germs

• Now is also the time to schedule your child's annual physical, as appointments often fill up towards the end of the school year and early in the summer. Check with your school on when the physical needs to be completed, as they typically need to take place within a few months of the start of the next school year. Make sure you bring:
  • School forms that require a doctor's signature
  • Accommodations for physical education
  • Immunization medical exemption forms
  • Also, request extra prescriptions for medication to be administered at school

• If your child is just starting school and/or doesn't yet have a 504 Plan:
  • Obtain documentation of disability (e.g., a doctor's diagnosis of FOP)
  • Contact your school district for evaluation. Evaluations may include physical therapy, occupational therapy, and an educational and/or psychological assessment
  • If your child also requires specialized instruction, you may also pursue an IEP*

• At your first 504 Plan meeting, the team will review your child's evaluation results with you. Helpful items that you can bring include:
  • Copy of diagnosis
  • Doctor's prescription for 1:1 aide (if desired)
  • Accommodations you hope that the school will provide. Examples of common accommodations from other FOP families are also helpful.

*Learn the difference between a 504 and an IEP here. 

* Find our resource for physical and occupational therapists here. 

Thank you to FOP moms Rory Otto and Amanda Cali for sharing back-to-school advice.