Advocating at School

The goal for every school-age child with a chronic condition is to experience academic success along with the highest level of health and function possible.

Every chronically ill child’s school career is full of powerful potential triggers for parents experiencing chronic sorrow. A child’s education has one milestone after another that need to be met. For parents and caregivers of a chronically ill child, just bringing the child to school each morning can trigger recurrent sorrow. It is a constant reminder that their child is different from the healthy children who can ride the bus each day to school.

Taking on an advocacy role for your child at school can be a successful coping strategy for parents. Parents who actively advocate for their child can feel a sense of accomplishment.

Beneficial relationships can be forged when parents reach out to school personnel who are open to their feelings and concerns. Here are some strategies for dealing with school personnel:

  • Open a dialogue with the school nurse and/or teacher to encourage a team relationship. The school nurse can become an advocate for your child and help lead the collaborative process between home, school and the medical community.
  • Explain the concept of chronic sorrow to school nurses, teachers and other personnel. This is important in laying the groundwork for successful communication about your child. Some educators have life experiences with a family member or friend who has a disability. Don’t be afraid to reach out to find that “special educator” who is sensitive to your child’s condition.
  • Use pleasant persistence during any discussion and focus on the process of getting your child the services he or she needs.
  • Understand your child’s educational rights. Use the resources at to educate yourself about the Americans with Disabilities Act (ADA), the Individuals with Disabilities Act (IDEA), and No Child Left Behind (NCLB). 1 Visit the Resources page for a list of additional agencies and organizations.
  • Request the school nurse to participate in Individualized Education Program (IEP) meetings when necessary.
  • Use your binder of information to educate school personnel as necessary about your child’s condition and to point out your child’s educational rights if necessary.
  • Network with parent groups, medical professionals, family and friends.

Your child’s school career is a super marathon. Parents who view it in this way will be better able to focus on working and surviving the process daily. Focus on small steps to feel a sense of progression. Taking one step after another helps to counter the sorrow you may feel. Remember, it is also important to keep a good working relationship with the school district.

  1. See Education Laws page.