Summer has come and gone. As we wave goodbye to vacations and sunny weather, it’s time to welcome the new school year. Living with epilepsy while going to school can pose many challenges. So, thinking about accommodations that you or your child may need in the classroom is key. Whether you are going away to college, or your child is starting their first day of kindergarten, we have a handy list of tips to help make going back to school a success.
Kindergarten – Elementary School
Back to school nerves are common for young children, especially for children living with epilepsy. There are ways to ease your child back into a regular school routine that can help keep them calm and find support while away from home.
Prepare your child for school by adjusting routines, such as bedtimes, mealtimes, and even medication schedules. This may help your child better transition into their time at school. Remember to consult your healthcare provider before making any significant changes to your child’s anti-seizure medication (ASM) schedule.
Talk to Your Child
Talk with your child about any concerns they have about seizures at school. You might be surprised by the questions they ask you or the feelings they share. Everyone deals with seizures differently. Some children are open about it. Others feel embarrassed about having seizures. This can be difficult if they happen in the classroom or during activities with friends. Helping your child understand there are others who face and overcome similar challenges can make them feel less alone. You can also ask your child’s teacher to share information with the class about epilepsy in a way that is age-appropriate and reassuring to students. Encouraging acceptance and understanding in the classroom, while educating students about epilepsy, is key to providing a supportive environment.
Schedule Parent Meetings
Connect with your child’s school about potential needs in the classroom. Schedule a parent meeting with the teacher, school nurse, bus driver, and any additional support staff at the beginning of the school year. Use this time to share key information about your child’s seizures, including time to review a detailed seizure action plan. This is also a good time to suggest to school staff to become Seizure First Aid certified. If your child may need seizure rescue therapies, connect with the school nurse or classroom teacher on when and how their rescue therapy should be taken.
Make Time for Specific Appointments
Set aside time to meet with a school behavior counselor, physical, speech, or occupational therapist, if your child will need regular visits. Connecting with them early is important to address any specific concerns. If your child has an individualized education plan (IEP) for epilepsy, make time to review and ensure appropriate resources are in place. Some children are entitled to accommodations under Section 504 of the Rehabilitation Act of 1973. Schools create 504 plans to give children with disabilities the support they need for any condition that limits daily activities in a major way. This plan also helps to prevent discrimination and protect your child’s rights.
Discuss Needs with Teachers
Share with your child’s teacher how epilepsy may affect their learning and behavior. Talk about issues that may happen during the school day related to seizure activity, medication side effects, or anxiety about having a seizure. Discuss how attention or memory difficulties may also affect your child.
For additional resources, you can view the Epilepsy Foundation’s age-appropriate resources to help you in addressing your child’s concerns.
Middle School – High School
As children get older, it is important to continue advocating for their needs as they move through different school settings. Just as in previous grades, connect with all teachers, nurses, and support staff who interact with your child on a regular basis. If you feel your child can talk about their needs on their own, they may feel comfortable sharing their diagnosis, epilepsy accommodation requests, and other essential information with the school themselves.
Attend Meetings with Your Child
Go with your child to any meetings before or during the school year, if your child has difficulty sharing or feels more comfortable with additional support when disclosing medical information. School staff will need up-to-date and specific information each year, even if they are remaining in the same school as previous years.
Prioritize Seizure First Aid
Encourage your child and their friends to become Seizure First Aid certified now that they are a bit older. Sports, after school activities, and part-time jobs may become part of your child’s schedule. The more people around them who can handle a seizure emergency, the better. This can also help reduce stigma for students who may be a bit uncomfortable about sharing their epilepsy diagnosis.
Opportunities for Higher Education
Consider scholarships for individuals living with epilepsy if higher education, such as a two or four year college or a trade school is something your child wants to pursue. In addition to nationwide scholarship programs for individuals with disabilities, your child may also qualify for a local scholarship program.
College may not be the right fit for every student, and that is okay. For students with epilepsy who wish to attend higher education, there are many parts of college to think about.
1. Would you feel more comfortable at a small school or a large school?
Smaller schools can often provide more individualized attention, but large schools may have a bigger selection of course types and extracurricular activities.
2. Do you feel comfortable managing your seizures away from your family and friends or at home?
The decision to move away for college or stay closer to home depends on what support you may need to manage your seizures.
3. If you are planning to commute to a local college, will you have transportation?
Some people with controlled seizures can drive and will be able to make the commute on their own. However, for those who do not have a license, make sure to research whether the college you wish to attend has available transportation, such as a bus or train near campus.
4. What services or accommodations does the college have for students with disabilities?
No matter your choice of school, it is important to familiarize yourself with a school’s disability services. Under the Americans with Disabilities Act of 1990 and Section 504, your college is required to provide the appropriate academic adjustments necessary to ensure you don’t experience discrimination. Examples of these adjustments can include priority registration, course substitutions, note takers, recording devices or sign language interpreters, and extended time for test taking.
Please note that it is your responsibility to inform your college of your necessary accommodations through your school’s Disability Services office or coordinator. To ensure that your needs are met, contact the Disability Services office as soon as you select your school. This way, you’ll be aware of their policies and deadlines. Your university will require documentation of your disability. This will typically consist of a letter or form prepared by your doctor that discusses your diagnosis.
5. Does your college have a health center?
Familiarize yourself with the college’s health services if you decide to move away from home and live on campus. Make an appointment at the health center to introduce yourself to the staff and let them know about your epilepsy. You can also show them your Seizure Action Plan and if needed, provide them with information about your rescue therapies. The health center may also be able to help you identify local pharmacies where you can refill your prescriptions.
Before going away to school for the semester, make sure you contact your healthcare provider to let them know you will be changing pharmacies to a new location so that you do not miss any doses. Mail order pharmacies are also an option if pharmacies are not easily accessible by your campus. The health center may also be able to help you identify local pharmacies where you can refill your prescriptions.
6. Will you have a roommate?
Many students who live on campus may have a roommate (or roommates!) during their time at school. It’s wise to tell your roommates about your epilepsy. In addition, encourage them to become Seizure First Aid certified to help you if you have a seizure in your room. You may also want to let your Resident Assistant (RA) know so that they can have this information in case of an emergency. It’s up to you to decide who you feel comfortable talking to about your condition and how much you wish to tell them.
Resources for Students and Family Members
Get ready for the new school year with these back-to-school tips. If you are looking for more information on how to attend school while living with epilepsy, we encourage you to contact your local Epilepsy Foundation office for additional advice and support. We also suggest you and your family learn more about the Individuals with Disabilities Education Act (IDEA). IDEA governs how states and public agencies provide early intervention, special education, and related services to children with disabilities.