Of School and Seizures, Part 1

From time to time, I invite persons who have experience with PNES and who have useful information to share with others, to post on this blog.  Over the next few weeks, author of the wonderful book “View From the Floor: Non-epileptic seizures: A patient’s perspective”, Kate Berger, will be sharing her knowledge and essential tips on how to navigate the school system when you are living with PNES.  I invite to read on….

These posts are very timely too since applications for continuing education scholarships for persons living with PNES are now available to download from Epilepsy Free: http://www.epilepsyfree.com/support-for-epilepsy/continuing-education-and-summer-camp-scholarships/

Kate Berger post:

I developed PNES as a senior in high school. Amongst a heap of conflicting emotions post-diagnosis stood the solid determination that this life-changing condition would not actually change my life. I was 18, on the cusp of independence, and resolute that PNES would not hinder my plans for the future.

I was strong. I was stubborn. I was… failing a class and racking up absences well into the double digits.

I needed help, but wasn’t confident that any existed. When I finally surrendered and sought the aid of a school counselor, I caught a glimpse behind the curtain of the school system and was astounded by what I saw there – options.

So. Many. Options! In a school full of rigid regulations and high expectations, there turned out to be a host of supports available to students with extenuating circumstances. We devised a plan for everything from leaving the classroom to making up course work, and with their assistance, I graduated from high school with a GPA that reflected my intelligence, not the quantity of seizures in my life.

I was hesitant to ask for help in school for two reasons. First, asking for help would require me to explain PNES, something I was not particularly adept at, two months into my diagnosis. Secondly, I hadn’t the slightest clue what kind of help I could ask for, and what would be granted. My teachers were suspicious of my behavior and I was wary of entering negotiations as persona non grata.

It would take me years to fully comprehend this, but as it turns out, I was also entering negotiations as a protected individual. There were legal mandates protecting my right to education. While there isn’t a wealth of helpful information regarding PNES, there is an abundance of information regarding the resources available to help you complete your education – you just have to know where to look.

Know your rights.

You are entitled to fair and equitable treatment, not only in the workplace, but in school as well. For more information, go to: http://www.ada.gov/

– The Americans with Disabilities Act (ADA): Law that protects individuals with disabilities from discrimination. It demands both equal treatment and the provision of reasonable accommodations. ADA is split into five titles.

– Title II: Requires equal opportunity to programs and services provided by public entities.

– Section 504 of The Rehabilitation Act of 1973: Prohibits the exclusion and discrimination, solely on the basis of disability, of individuals from programs receiving federal funding.

– Individuals with Disabilities Education Act (IDEA): Children with disabilities are guaranteed access to free and appropriate public education. IDEA connects eligible students with special education services. IDEA is split into four sections.

– Section B: Pertains specifically to school-aged children, preschool – grade12.

Know what’s possible.

Though teachers hold the ability to craft the design of their classroom, they are required to provide reasonable accommodations to students in need.  

– Accommodation: A modification to the structure of a course designed to remove barriers to learning. It allows a student with a disability to take the same course as a typically functioning student, while ensuring equal opportunity to coursework and class experience. Examples: a note taker, extended time on exams, reduced distraction testing room etc.

– In primary and secondary education, accommodations are typically arranged via organized plans:

– Individual Education Plan (IEP): A specialized learning plan for students who qualify for special education services under IDEA.

– Specific criteria must be met.

– 504 Plan: Accommodation plan for students participating in the general education environment.

– Broader definition of disability and more likely to be appropriate for PNES.

– In college, accommodations are still available, but rarely are referred to as an “IEP” or “504 plan.” To receive services, students must self-advocate and actively seek out resources.

3. Know who can help.

In primary and secondary education, special services can be arranged through a teacher, school counselor or principal. In college, special services are typically arranged through a specific department within the university.

– Disability Services: A department within a school or university devoted to assisting students with special circumstances. They serve as a liaison between students and university professors, providing structure and suggestions that allow students with unique challenges equal access to learning opportunities. This assistance typically comes in the form of accommodations.

– In many cases, this department assists by protecting your privacy. You relay your confidential medical information to them, and they vouch for the validity of your condition. On any accommodation forms, teachers will only see that you have an unnamed disability requiring “x, y, and z” accommodations.

– Also found under other names such as, the “Office for Student Success” or an “Academic Achievement and Access Center.” An academic advisor at your university can connect you with the appropriate office.

Each individual, even among the PNES community, is different in what assistance they need to achieve optimum success. These are the simply the facts. Stay tuned for my next post, in which I’ll be sharing some tips and what I personally found to be helpful.

Kate’s book: View from the Floor can be purchased on Amazon: http://www.amazon.com/View-Floor-Psychogenic-Non-Epileptic-Perspective/dp/069254545X/ref=sr_1_1?s=books&ie=UTF8&qid=1455805859&sr=1-1&keywords=view+from+the+floor