https://resources.lupus.org/entry/a-guide-to-lupus-and-school

Lupus at school: A guide for parents and kids

Lupus Foundation of America

Resource Content

A big obstacle for kids with a chronic illness like lupus is the uncertainty of their condition. They may feel fine one day and then unwell the next. Add going to school on top of this, and, understandably, both kids and their parents can feel overwhelmed. The good news is there are ways to make navigating school with lupus easier. For parents and kids—and also your school—having a plan is key.

See COMMUNICATING WITH SCHOOL for quick tips to help you discuss with teachers, the school nurse, and other staff members how lupus specifically affects your child. Then read our STEPS FOR SUCCESS for building a school care team to support your child’s academic and social-emotional development.

Kids have a role to play too. To get the most out of school, kids need to listen to their bodies and speak up to teachers and school staff about how they’re feeling. Check out TIPS FOR KIDS for empowering ways kids can help manage their own health and enjoy school to the fullest.

COMMUNICATING WITH SCHOOL

Tips for communicating with your child’s school about lupus

An important part of making sure your child’s medical, social, and emotional needs are met at school is developing solid relationships with teachers, the school nurse, and other staff members. You will want to think of teachers and staff as allies—these are the people you can work with to figure out how to help your child with lupus succeed, while keeping him or her as healthy as possible. There are several communication tips that can help you develop successful parent-staff relationships:

  • Stay focused and positive. Keep all your communications with teachers and staff centered on the goal of meeting your child’s needs.
  • Be proactive. Don’t be afraid to make the first move. Suggest steps for advancing the conversation with teachers and staff, and recommend how people at the school can help. Remember that it’s important for your child’s health that you start addressing her or his lupus needs with the school sooner instead of later. Download our “Letter to School Regarding My Child’s Lupus” template below to get started.


CUSTOMIZE A LETTER TO SCHOOL REGARDING YOUR CHILD’S LUPUS

Communicating with school should be easy. Download this template to customize a letter for your school officials informing them of your child’s lupus, and asking for a meeting to discuss accommodations and issues.


  • Avoid misunderstandings by asking questions. If you are confused about what teachers or staff members are trying to say, don’t be afraid to ask direct questions, ask them to explain their point in a different way, or ask them to provide examples. It can also help to restate what you think they are saying in your own words.
  • Ask the school for suggestions. Teachers and staff members may have additional ideas for meeting your child’s needs, based on their experiences working with children at the school. It can be helpful to ask them, in addition to providing your own suggestions.
  • Acknowledge the school’s own needs and challenges. Recognizing that meeting some of your child’s needs may require effort and resources from the school will show that you are reasonable and willing to cooperate. This will encourage the school to carefully consider your own needs in return.
  • Be open about your child’s lupus. It is very likely that your child’s teachers and school staff members have not heard of lupus and don’t understand the disease. Sharing information with them about lupus, including your child’s own symptoms and experiences, will help them grasp the seriousness of the condition and understand why your child needs the provisions you are requesting. The following section includes essential information to share with your child’s school care team and details of accommodations you might consider.

Building your child’s school care team

Your child’s school care team is the group of teachers and staff members you will want to inform and educate about the specifics of your child’s lupus. You’ll want to build relationships with them and work together on an ongoing basis to meet your child’s needs. The care team may include: your child’s teacher(s), the school nurse, counselor or therapist, special education teachers, and the school principal.

Here are some basic steps to take:

  1. Talk to your child’s doctor.
    Ask what medical information the school nurse will need, and find out any suggestions the doctor has that you can share with your child’s school care team.
  2. Set up a meeting.
    Contact your child’s teacher(s), the school nurse, the school counselor, and other relevant staff members to set up a meeting to discuss your child’s lupus needs and create a plan together. You will probably want to at least copy the school principal to keep her or him in the loop. Be sure to include the following in your letter or email. (You can also download and customize our “Letter to School Regarding My Child’s Lupus” template.):
    • Your child’s name, grade, and teacher(s)
    • A thank-you to everyone for their cooperation and a message that you look forward to meeting with them
    • Your contact information and a date by which you would like the teachers and staff to respond to your request
    • An invitation to the teacher(s) and staff members to come together and meet with you to talk about how the school can help meet your child’s needs, including a suggested date and time
    • The name of your child’s doctor and his or her recommendations (make sure you get approval from your child’s doctor first)
    • An explanation of what lupus is and how it affects your child’s ability to succeed in the classroom
  3. Come prepared.
    Prior to meeting with your child’s school care team, download and customize the checklist below. It will help guide your meeting and provide school staff details of your child’s lupus, and how it affects him or her at school. Bring two copies of the checklist with you so you can leave one copy at school. The checklist covers these important points:
    • What lupus is and how it affects your child’s health.
    • Your child’s symptoms and what triggers can cause him or her to have a lupus flare.
    • The medications your child takes and their side effects.
    • The ways lupus affects your child’s mental, emotional, and social well-being.
    • When and how you’d like to be contacted by school staff regarding issues related to your child’s physical and emotional health.

CUSTOMIZE A CHECKLIST FOR YOUR CARE TEAM

Download this template to help educate the care team and craft your child’s school care plan.


 

Additional steps to consider:
Research different ways the school can assist your child, and think about which (if any) formal plans may be necessary and appropriate for your child. You may be able to ensure that your child’s needs are met by developing a plan that is only self-enforced by you and your child’s school care team, or you may end up wanting something formalized.

  • An Individualized Healthcare Plan (IHP) is a written plan the school nurse develops for children with health care needs that require special services from the school (like administering medications).
  • An Emergency Care Plan (ECP) should be developed by the school nurse to ensure that the correct actions are taken if your child has a lupus flare or other lupus-related medical emergency at school. 
  • A 504 plan is a set of accommodations that allow children with disabilities fair access to the same general education program as their peers. Children with any disability qualify for a 504 plan.
  • An Individualized Education Program (IEP) is a more stringent plan for children who need a specialized education due to learning disabilities caused by their condition. A child must undergo an Independent Educational Evaluation (IEE), paid for by the school, to determine if he or she qualifies for an IEP.

School survival guide for kids with lupus

Your parents and doctors make a lot of the important decisions about your health, but you have a big role to play, too. When you’re at school, it’s important that you manage your lupus as well as you can. This means making smart decisions and thinking about how you feel. Having lupus may make you feel different from classmates, but you can help them understand why you have to do certain things and be mindful of your health. Here are some things to do so you can make sure school is as productive and fun as possible.