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Lupus Coping Corner

Back to School for Kids With Lupus

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

For children and their parents, the back-to-school season can be both exciting and stressful. But for many parents of children with chronic illnesses like lupus, navigating the education system can require much work and coordination. And for these kids, their special accommodations and physical changes can make school a somewhat anxious experience.  It is important to help children with lupus and other chronic diseases ease back into the school routine so they can maintain as much normalcy as possible, while ensuring that all of her accommodations are in place.

Enlisting the School in Meeting Your Child’s Needs
I want to share an article, Children with Cancer Face Back-to-School Challenges, with our lupus parents because it gives several helpful suggestions that can be applied to coordinating care for your child at school. For example, parents doing this for the first time should find out who to speak with at school before classes resume.

Sometimes there is a specific office that coordinates communication between your child’s teacher, the school principal, and the school nurse.  You can request an Individualized Education Program for free support services like tutoring; or you can request accommodations like extra time to complete school work or take a test due to fatigue or hospitalization, physical therapy, and preferential seating through a 504 Education Plan. The earlier these services are put into place, the easier it is for your child to transition from summer to school.

Encouraging Your Child to Express Her Feelings
Speaking with your child about how she is feeling about returning to school is key.  If she has any concerns, it is important that she talk them through with you. Perhaps you can offer her suggestions about how to deal with common social situations that can arise, like how to answer questions other children might ask her about lupus. If the child is very young, it could be helpful for the school nurse to teach a lesson on lupus so classmates better understand her situation.

While going to school can be a challenging experience for children with chronic illness, school does offer positives as well. Keeping focused on their studies, extracurricular activities, and socializing with friends can help them keep their minds off of lupus and on the things that matter to most kids. And starting a new grade can help the child feel like she is making progress through life while re-connecting with her classmates can help take the focus off the illness and put it more on normal socializing.

Furthermore, socializing during the teen years can be awkward, in general.  Please tune in for our webinar about lupus in teens on September 11, 2013 1:00 PM EST with pediatric rheumatologist Dr. Philip Kahn. Another good resource -- the Hospital for Special Surgery in New York has published a booklet for teens with lupus to help them navigate through life with lupus. Download your free copy here. It is available in multiple languages, as well.

And remember, whether you are working with school faculty or listening to your child’s concerns, communication is the foundation of helping your child succeed in school.

 

Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.