Advocating for Your Child at School

When your child heads off to school, whether it's their first day of kindergarten or they're starting high school, it's normal to worry about safety, support, and understanding. Questions like “Will people in the school know what to do during a seizure?” or “Will my child be treated fairly?” are common and valid.

As a caregiver, you are your child’s most important advocate. Schools and school staff want to help but sometimes need more information, training, and support to help safely and effectively.  

Important Updates to Help Work With Schools

These newer or updated things are important to know and can help you work with the school for your child’s care plan and support team.

Seizure Action Plans (SAPs)  

Make sure you have an updated seizure action plan (SAP) to share with the school. The SAP outlines what to do during a seizure, when to give rescue medicine, and who is responsible. Schools are expected to have a written plan for each child with epilepsy.  It should be shared with all relevant staff: teachers, nurses, aides, bus drivers, coaches, and volunteers.  

What Are SAPs and ASAPs? | Seizure Action Plans

Training for School Staff  

The Epilepsy Foundation offers on-demand (online) training and live webinars for school personnel and nurses. Topics include seizure first aid, how to recognize different kinds of seizures, emergency protocols, and how to support a child academically and socially.

Legislation and Policy Progress

Many states now require school staff to receive seizure recognition and first-aid training. In some places, the law also requires that a student’s seizure action plan is part of their official school record and that staff are prepared to give physician-directed care, including rescue medication when needed.

Resources in Multiple Formats and Languages

Seizure first-aid posters, observation checklists, seizure diaries, and other tools are available, often in many languages. These help parents, students, and schools work together more effectively.

Awareness of Broader Challenges  

More schools now recognize that epilepsy affects more than seizure safety. Learning, attention, memory, mood, and social connections can also be impacted. Understanding these areas helps schools support your child overall, not just react to seizures.

Download a free seizure action plan form and share it with your child’s school today.

How You Can Advocate for Your Child

Build a Partnership

Building a trusted partnership with the school is one of the most powerful steps you can take. Meet with the school nurse, your child’s teachers, and administrators. Share your child’s seizure history, what types of seizures they have, their triggers, and what rescue medicines look like. Ask what the school already knows and what training is available.

Work closely with your child’s doctor and the school to ensure there is a seizure action plan. This plan should clearly explain what to do during each type of seizure, when and how to administer rescue medications, who is responsible in different situations, and how to support your child afterward. It should also cover activities like sports, field trips, and bus rides.

Ask About Training

Ask the school to provide seizure recognition and first-aid training for staff. If the school doesn’t already have this in place, you can connect them with the Epilepsy Foundation’s online resources. The Epilepsy & Seizure Safe Classrooms Toolkit is for educators and parents to create safe and supportive classrooms for students with epilepsy. The toolkit has free, age-appropriate material for K-12 students to understand epilepsy, recognize seizures, and respond in an emergency.

Open Communication

Keep communication open throughout the year. Share updates when things change, such as seizure frequency or medication adjustments. Ask teachers and staff how the plan works for them and listen to their observations about your child’s safety and learning.

Support Additional Needs

Keep in mind your child’s academic and emotional needs, too. Fatigue, memory problems, or side effects from medication can affect classroom performance. Work with the school to create accommodations like extra time on tests, breaks after seizures, or help with notetaking. Encourage staff to watch for signs of stress, anxiety, or social isolation and ask about counseling or peer support options.

Know Your Rights

Finally, know your child’s rights. Federal laws such as IDEA (Individuals with Disabilities Education Act) and Section 504 protect students with health conditions. These laws may give your child access to accommodations through a 504 Plan or an Individualized Education Program (IEP). If challenges arise, you have options, including meetings, mediation, and advocacy support.

Encourage your child’s school to take the free Seizure Recognition and First Aid training offered by the Epilepsy Foundation.

Challenges That Still Come Up

Even with improvements in awareness and training, families still encounter challenges at school. Some staff members may not feel fully comfortable or confident responding to less common seizure types or emergencies. There may be questions about who can administer rescue medication or when it should be given, and concerns about liability can create hesitation.  

There can also be gaps in training for people beyond the classroom, such as bus drivers, substitute teachers, coaches, or volunteers, even though they play important roles in your child’s day. And while a Seizure Action Plan may be in place, ensuring it is followed consistently across all settings can still be difficult. These challenges don’t mean the school is unwilling to help. Often, they simply highlight the need for ongoing communication, training, and reassurance.

Encouragement and Reminders

It’s important to remember the progress you and your child are making. Every step contributes to your child’s safety and confidence. You are advocating not only for your child but also for a school environment that is more inclusive and better prepared. Resources from epilepsy organizations, local support groups, and trained medical providers can help lighten the load.

Just as importantly, it’s worth celebrating the wins when:  

• A staff member responds calmly to a seizure.
• Your child feels included in class.
• Accommodation makes learning easier.  

Each success is a reminder that your efforts matter and that you are not alone on this journey.

Join our community of parents and caregivers. Sign up for our newsletter to get updates, stories, and resources for families living with epilepsy.

Feeling overwhelmed at times is completely understandable. You have an important role, but you also deserve support. By working together as a caregiver with school staff, you can create a school experience rooted in safety, dignity, learning, and belonging.

Your support helps provide resources, training, and advocacy for families like yours. Consider making a donation to help ensure every child with epilepsy is safe and supported at school.