Transitioning to college for a teen who had epilepsy surgery in childhood may seem daunting, but it is possible for many in our community.

Here are some tips and resources for young adults in our community who want to experience college life, even for those who continue to have seizures.

There are a few key areas to think about in terms of transitioning to college life. Which of these skills does your student already have? Which skills need practice?

  • Communication skills & self advocacy – recognition of one’s own needs and accommodations, the ability to independently request needed accommodations in the classroom, housing, workplace, or other settings, knowing what medical documentation is required in order to obtain accommodations, and your legal rights;
  • Self-regulation and planning – managing your emotions and personal motivation, keeping track of appointments and due dates, arranging information (outlining, planning, prioritizing, etc.), practicing good study skills;
  • Self-determination skills – persistence, problem-solving, and decision-making;
  • Social skills and emotional intelligence – interacting with neurotypical or non-disabled peers and adults (teachers, counselors, supervisors); appropriately disclosing your medical condition to a roommate, teacher, boss or co-worker; dealing with conflict;
  • Self-care and wellness – making wise choices to maximize your health such as sufficient sleep, healthy diet, and exercise; understanding interactions between birth control methods and anti-seizure medications and the effects of recreational drugs or alcohol on seizures and efficacy of AEDs;
  • Safety awareness – being able to ‘read’ a potentially dangerous situation and understand the intentions of others; knowing how to get to safe space and who to call for help; sexual safety including birth control, STDs, and saying ‘no’; safety in physical activities such as not swimming alone, bicycling without a helmet, or activities that could be dangerous if a seizure should occur;
  • Health and medical care – taking responsibility for your health: knowing what is in your medical plan and emergency plan (for seizures or other medical emergencies), planning for recovery time if seizures do occur; how and when to share appropriate personal and medical information, how to access healthcare and utilize health insurance, where to get supports for mental or emotional health needs or substance abuse;
  • Daily living skills and community access – developing independence with daily living skills (cooking, laundry, banking & budgeting, getting around campus and community); knowledge of the impact of epilepsy or a related visual impairment on driving (and having a plan for alternate transportation);
  • Financial planning – having adequate financial resources to meet your needs, the ability to use a credit/debit card and or a bank account wisely, and/or a plan to obtain scholarships, seek federal or state assistance, or get a part time job;
  • Support systems – ensuring that you have all of your support needs in place (food, clothing, housing, travel needs, health/dental/prescription drug coverage, and access to needed healthcare and mental health services) and that you know how to access them.

Your first stop should be the Epilepsy Foundation website. They have excellent resources that may answer all of your questions regarding seizure management in the secondary setting:

It’s important to know what accommodations your student might need in college. Meet with the disabled student services office before enrolling (or perhaps even before applying) to see if your chosen university can provide those accommodations. For instance, if your child requires a single dorm room and the university you’ve chosen only has doubles and quads, that may cause undue stress. Suppose your student requires an attendant or a personal care assistant. In that case, very few colleges provide attendants, and some schools won’t allow extra adults in classes. Here’s a handy chart you can use to document which different schools offer accommodations and services: College Disability Services Research Form.

Some common accommodations may include: priority registration (allowing the student to schedule at an optimal time of day for their fatigue level or therapy appointments, for example), permission to record lectures, extended time for test-taking, screen-readers, or voice-recognition software. Many colleges have tutoring centers that are available free of charge, but your student must take the initiative to go to the tutoring center and know what help they need. Volunteer college students often provide this tutoring, so this is not special education support. Here is some advice from Elizabeth Hamblet, an expert on college accommodations for students with Learning Disabilities. According to Hamblet, “There may be a reason why the disability services office says no to a requested accommodation. And sometimes even when they approve it, a professor may object.” To learn more about this see this article: When College Disability Services Offices or Professors Say No to an Accommodation.

While the accommodations on your student’s IEP will not necessarily be provided in college, the disabled student services office may use that list to determine what accommodations might be made available in the college setting. It’s essential to know your rights, especially under the Americans with Disabilities Act, which protects individuals with disabilities at any institution that receives public funds.

Many youths with epilepsy have other diagnosed conditions or are at increased risk for a range of behavioral and emotional difficulties. These challenges may have a greater impact on health-related quality of life than the epileptic seizures themselves. 

ADHD (attention-deficit/hyperactivity disorder) is one of the most common co-occurring conditions in youth with epilepsy; 30-40% of youth with ‘active’ epilepsy meet criteria for a diagnosis of ADHD. ADHD can be an enormous barrier to success in adulthood. In high school, the student has the support of an entire IEP team, teachers, counselors, coaches, and parents, and may receive their medical care in a pediatric multidisciplinary clinic. In a way, the youth’s prefrontal cortex is supported by all of the adults in their life. Once they transition out of these coordinated settings, they are suddenly responsible for managing their own tasks, schedule, and decision making, which can be daunting.

According to ADDitude Magazine, “Most high school graduates with ADHD are not mature enough to be successful in college. Our teenagers with ADHD experience a delay of three to five years in brain maturity. The typical 18-year-old high school graduate diagnosed with ADHD has the maturity level of a 14- or 15-year-old.” This article explains why teens with ADHD should not rush college. It provides some suggestions on preparing your teen and some alternatives to the 4-year college path. Research shows that children who began having seizures when their brains were still developing may face developmental interruptions or delays in other areas as well.

The most common adult outcomes for individuals with epilepsy include challenges with memory and cognition. The Managing Epilepsy Well Network, part of the Centers for Disease Control and Prevention, recommends several evidence-based programs that could be useful for young adults with epilepsy. Even those who no longer have active seizures tend to struggle with the same issues. These programs benefit those with controlled and uncontrolled epilepsy. The Managing Epilepsy Well Checklist contains self-management strategies to control your seizures and overall wellbeing. 

If your student intends to work while in college, there are laws to protect them in the workplace as well:

Here are a few upcoming presentations that might be useful in thinking about college:

Additional information

About the author

Audrey Vernick is the Director of Patient and Family Advocacy for The Brain Recovery Project. She is the parent of a child who had hemispherectomy for seizures caused by stroke and holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates.