Preparing for Back to School With Epilepsy

As the back-to-school season approaches, it's essential to address how adult students with epilepsy, particularly those who are nonverbal, and their caregivers can prepare for a successful academic year.

Managing epilepsy outside the home in an educational setting requires thoughtful planning, effective communication strategies, and the creation of a supportive environment. As the parent and caregiver to our son, who is non-verbal and has epilepsy, I worry about new school personnel not having the appropriate training and information about our son's medical condition and needs.

Understanding epilepsy and its impact

Epilepsy is a condition that affects the nervous system and causes seizures that occur repeatedly. The duration and severity of these seizures can vary greatly, affecting brain function and everyday tasks.

For nonverbal individuals, communication challenges can add an extra layer of complexity, making it crucial to establish alternative methods to ensure their needs and concerns are addressed.

Key preparations that we use for a new academic year

Medical management and safety plans

The first step in preparing for school is to ensure that epilepsy is well-managed. This involves consulting with healthcare providers and scheduling appointments with a neurologist just prior to the new school year to review current medication and treatment plans.

Discuss any potential changes and ensure that the treatment is aligned with the academic schedule. Have the proper school paperwork in advance at this appointment makes back to school communications easier.

Developing a seizure action plan

Create a detailed seizure action plan outlining what to do in case of a seizure. This plan should be shared with all relevant school personnel, including instructors and campus security. Our son's school requires this form for each new school year, and it must be signed by the physician.

Emergency contacts and medication

Ensure that emergency contacts are up-to-date and that the school is aware of any specific medical needs, including the location and administration of rescue medications if needed. I recently just went through our caregiving binder to update all the information. I send a copy of this binder to our son's teacher at the beginning of the school year.

Communication strategies

Nonverbal students require effective communication methods to express their needs and navigate their educational environment. Here are some strategies:

Assistive communication devices

Use devices or apps designed for nonverbal communication, such as speech-generating devices, communication boards, or picture-based systems. Make sure that these tools are integrated into the student's daily routine and are easily accessible.

We use an iPad with an app called Proloquo, and our son is successful at communicating his wants and needs using this app. It decreases his frustrations around communication.

Training and support for staff

Educate faculty and staff about the student's communication methods. Training should include how to use assistive technology and how to interpret nonverbal cues.

This fosters a more inclusive environment and improves the student's overall educational experience. We talk about these issues in our son's ARC meetings to address his IEP (Individualized Education Plan) each year.

Personalized communication plans

Develop a customized communication plan that includes key phrases, gestures, or symbols the student uses. This plan should be reviewed regularly and adjusted as needed to accommodate changes in the student's needs or preferences.

Because my son is non-verbal and has cognitive delays, he also has some signs that he has developed on his own. These are called "pigeon signs," and it is important that we communicate these to everyone involved in his care and education

Academic accommodations

Tailoring academic accommodations to meet the needs of a nonverbal adult student with epilepsy is crucial for their success.

Flexible scheduling

If possible, arrange a schedule that accommodates any medical appointments or potential seizure-related disruptions. Flexibility can reduce stress and allow the student to manage their health effectively.

Alternative assessment methods

Work with instructors to explore alternative methods for assessments, such as written assignments, projects, or oral presentations using communication devices

Classroom modifications

Make sure that the classroom environment is safe and conducive to learning. This includes accessible seating arrangements, clear emergency procedures, and minimizing potential seizure triggers. Our son seems to have more seizures when he wakes form sleep, so we requests that the school make every effort to discourage a nap during the day.

Support systems and resources

Preparing for back-to-school for a nonverbal adult student with epilepsy involves a combination of medical management, effective communication strategies, tailored academic accommodations, and a strong support system. By addressing these areas comprehensively, students can approach the academic year with confidence and focus on their educational goals.

With thoughtful planning and collaboration between the student, their caregivers, and educational staff, it is possible to create a supportive and inclusive learning environment that enables success and fosters personal growth.