Advocating for Your Child: Navigating School and Community

Navigating School

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.

Executive Director Update - A Season of Gratitude

Season of Gratitude

I am writing to wish you and your family the very best this Holiday Season. This time of year, especially, I am filled with deep appreciation for all that Cure JM families have accomplished to advance our mission, to improve the lives of children living with JM, and to support the doctors and researchers driving better treatments as we fight for a cure.

Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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