Advocating for Your Child: Navigating School and Community

Many students with juvenile dermatomyositis or juvenile polymyositis need special accommodations at school or at their place of child care. Therefore, after your child receives a JM diagnosis, educating your child’s school/child care personnel is important. Parents have reported a variety of avenues they have taken to do this. Depending on your child’s situation, school, child care location, and/or your school district, the following presentation and information may be of assistance to you:

This presentation features:

Both Michelle and Sue are moms to children with juvenile myositis.

While this presentation was filmed during COVID, it still offers real-life, practical tips on how to navigate your child’s school system, including:

  • Effectively communicating with your child’s school.
  • Understanding 504, IEP plans, and determining which one is right for your child
  • Navigating sun protection issues, social issues, P.E. class, and other classroom accommodations that may be available to your child

View/Download Presentation in PDF Format

Important Steps to Take When Navigating School:

  • Have your child’s rheumatologist draft a letter to the school or child care provider detailing your child’s specific needs. 
  • Print copies of What is Juvenile Myositis? for personnel interacting with your child.
  • Request meetings with school personnel (principal, nurse, teacher) to review letters, detail any specific special needs, and answer questions.
  • If necessary, begin the IEP or 504 process to get your child the support they need.
  • Explore what accommodations need to be made to allow your child to be successful, safe, and their healthiest. Below are a list of possible accommodations you may want to consider:

For Chronic Illness/Fatigue:

  • Extended or alternate time for test taking
  • An alternate place for test taking
  • Reduced workload
  • Shared notes
  • Modified assignments
  • Extra breaks
  • “Self-limit” Physical Education

Medical Accommodations:

  • Water bottles/snacks allowed
  • Sun protection (hat, sunblock, etc.)
  • A seat away from the windows
  • Movement and rest breaks, allowed as needed
  • Extra Restroom Breaks, allowed as needed
  • Physical therapy or occupational therapy in school when available 

Muscle Pain & Weakness:

  • A place to rest in the classroom, such as a beanbag in the back of the room
  • Elevator pass
  • Wheeled backpack
  • A second set of books for home
  • Oral testing/minimal writing
  • Not graded on handwriting, larger space to write, or the computer access
  • Dictated homework
  • Adaptive technology
  • Preferential scheduling to reduce walking
  • Locker placement close to classes

For Immunosuppression:

  • Alternate rest area during cold/flu season to avoid Nurse’s Office
  • IHP and Medicine Authorizations, as needed
  • Excused absences
  • Notification from the nurse’s office when common illnesses are “going around.”
  • Access to handwashing in the classroom

To Assist with Concentration/Organization:

  • Preferential seating
  • “Homework” buddy
  • Shorter quizzes instead of larger tests
  • Oral assessment
  • Advance notice of field trips

While this is a partial list, we hope it can be a good conversation starter for your family and your school.

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